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Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Diabetes Connections with Stacey Simms Type 1 Diabetes
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Now displaying: Category: artists actors authors
Sep 21, 2021

Kevin Covais was one of the youngest contestants on American Idol; he was just 16 when he made his debut during season 5. He’ll share some behind the scenes stories including managing low blood sugar during a live performance. Diagnosed with T1D at age 11, Kevin has been working steadily as an actor. We’ll talk about working in Hollywood with diabetes – and what that's been like during COVID, more about American Idol, and how Kevin found himself mentoring other kids with type 1.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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Stacey Simms 0:00
Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

Announcer 0:20
This is Diabetes Connections with Stacey Simms.

Stacey Simms 0:26
This week, actor Kevin Covais was one of the youngest contestants on American Idol back in season five, he'll share some behind the scenes stories, including managing low blood sugar during a live performance.

Kevin Covais 0:38
And I'm singing and I just like, I can't wait for this thing to be over. I can't wait to stop singing and get the critiques from the judges that I'm not even gonna really listen to you because I got to get off the stage and I got to get some juice or I gotta get some tablets. I gotta take care of this.

Stacey Simms 0:49
He was fine. And since Idol , Kevin has been working steadily as an actor. We'll talk about working in Hollywood with diabetes and during COVID more about American Idol, and how Kevin found himself mentoring other kids with type one. He has advice for parents too.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show, always is so glad to have you here. Hi, I'm your host Stacey Simms. We aim to educate and inspire about diabetes with a focus on people who use insulin. And my guest this week is Kevin Covais, diagnosed with type one just as he turned 11. Kevin is best known for American Idol as you heard in the tease there and the Disney Channel show Good Luck Charlie, where he played the character Victor. He is a steadily working actor with roles in Transformers and this is us, the rookie, NCIS Los Angeles and more. I put some pictures of Kevin in the Diabetes Connections Facebook groups, you can kind of see him on set. And he is appearing in the new Netflix series on the verge, which is out this month.
I thought it would be fun to just play a little clip of Season Five of American Idol where Kevin appeared and this was back in 2006. As I said he was one of the very youngest contestants. So here's a little bit of him from back then.
(Kevin sings)
https://www.youtube.com/watch?v=dc5ec3te75I

Stacey Simms 2:44
used to watch idol all the time. And as I confessed to Kevin, it has been a while. But what a big show, right? And you'll hear Kevin during the interview mentioned Elliott Yamin who was also on season five and also lives with type one. I got to meet Elliot a couple of years ago at a touched by type one conference he is still performing writing music. He's now a dad, I'll put a link to Elliot stuff in the show notes as well.
That of course will have tons of information about Kevin, but I just thought that was really interesting because to me, I don't know it seems like yesterday but of course 2006 was the year that my son was diagnosed, Benny was diagnosed right before he turned two. He is now almost 17 which is I mean, we've lived with diabetes. Now I've been part of this community for 15 years in just a couple of weeks. So 2006 kind of was a long time ago and kind of seems like yesterday to me.
Alright, Kevin's interview coming up in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen and our endo always told us that if you use insulin you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice but a very low blood sugar can be very frightening which is why I'm so glad there's a different option for emergency glucagon it is Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to go with no visible needle. You pull off the red cap push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon.com slash risk.
Kevin, welcome to the show. I'm really glad to talk to you. Thanks for making some time for me.

Kevin Covais 4:26
Stacey. Thank you for having me. I'm so excited to find we've been talking about this for a while I'm so I'm so happy to finally join the program. It's great.

Stacey Simms 4:33
Awesome. Yeah, it's great that we finally connected Gosh, so much to talk about. We connected everyone We see each other every year add friends for life. Yeah. And I was so happy we were able to do that this year. We'll kind of see what happens going ahead. But before we get into all of that, do you mind if we just kind of take a step back and look back? I mean you haven't been on the show before and I'd love to kind of revisit the early days of Kevin

Kevin Covais 4:59
Spacey. I would be disappointed if we didn't do that. So let's, let's dive in. Let's do it. Yes, please.

Stacey Simms 5:04
As I was asking that I was thinking about American Idol but I should probably go back further. You were diagnosed when you were you were a kid. You were not even 11 years old yet, right? Yeah, it

Kevin Covais 5:13
was just prior to my 11th birthday symptoms leading up. Yeah, my birthday is at the end of May. And I just remember that entire month of May so vividly. You know, obviously, you think back to childhood and, you know, memories here memories there. But that month just stands out in my mind so vividly. Symptoms throughout the month, parents wandering out what's going on with Kev? what's what's happening, you know, maybe an infection this that bring me into the doctor, several days prior to my 11th birthday to get the diagnosis of type 1 diabetes. Yeah.

Stacey Simms 5:41
Did you spend your birthday in the hospital?

Kevin Covais 5:43
I think it was. So it was it was several days after my birthday. So yeah, it was the entire month leading up to the birthday. And then it was, yeah, right. At the start of June, I was putting so this was several days after my 11th birthday that I was in the hospital. And just you know, you hear the doctor tell you and your kid and I, you know, I immediately I broke down and cried. I didn't know, I didn't know what I was dealing with. I you know, you hear the word diabetes and you know, your mind escapes, you starts running around all these different things. And then he you know, the doctor, you know, kindly explained to me, now this is something you're going to be able to manage your life. It's obviously going to be a great deal of work. But this is something you live with and something you manage. And then from there, I learned everything over the course of the next week and being in the hospital and getting treated. Yeah, it was. It was a month like no other though. Yeah, that's for sure. Yeah.

Stacey Simms 6:27
So your kid, you're diagnosed at a time when frankly, it's the as I recall that time that early 2000s. It's the time right before everything really started changing. Absolutely. As I look at I mean, Ben, he was diagnosed in 2006. They were like, we've got this amazing thing called Lantus. That's just been approved for kids. Yeah, you know, and now everything seems so different with the technology. What was the first kind of technology or routine that you were on? Gosh, you

Kevin Covais 6:54
got me thinking back to the pre Lantus days of time? Yeah, it's it's wild. For me. Taking the injections, taking the daily injections, I will go ahead and say I'm not currently on the pump, that I am one of these those rare rare people that uh, that takes daily injections. I have a CGM. But that's, that's my preferred way of doing it have been doing it that way for years. But yeah, starting out being diagnosed taking human and human log each and every day. Yeah. And those pre Lantus days. And, you know, they think back to those syringes before you have the pens and the newer technology and the things that make it so easy now, so, so accessible, and thinking back to a time before, you know, we had some of those advancements, it was definitely interesting at the start for those first couple of years.

Stacey Simms 7:35
Well, is that the kind of and I say technology to encompass whatever you're using shots? Oh, of course. Yeah. So when you're talking humulin, you have a log, did you have to kind of eat on a set schedule? Or were you okay to kind of inject when you want it to eat,

Kevin Covais 7:51
you know, that really came with adulthood, that sort of injecting when I wanted to eat and the accessibility I remember, as a kid, it was, it was the preference of my doctors to have that set routine. I remember going in and you have a regimented schedule of three meals, several snacks, a snack at an after school snack at roughly 3pm. And, and one prior to bed 9pm at night. And yeah, that was for a while. It's obviously insulin matching. Exactly what you're what you're ingesting exactly what you're eating and set times. It was all very regimented. For me those first couple years of my life. Yeah. Something. I bet. I bet it's a trip to think back on it really is. Yeah,

Stacey Simms 8:30
it must be I mean, I just think, you know, it's there's no easy age to be diagnosed with diabetes. But 11 you're just starting out that like, tiptoeing into independence. Yes. Middle School. Do you remember? Did your parents kind of give you a long rope? Were they very protective? I don't want to be too personal.

Kevin Covais 8:48
Please, please. They were unbelievable. I'm so blessed to have the mother and the father that I do. And the support system that I do, I think they handled it differently. I think, with my mother, I think not that there was more trust, I think, was maybe a little longer rope and trusting me to do the things I think my father was, you know, very concerned at times, but you know, rightfully concerned about, you know, what I was taking and this and that. So there were I think there were several different schools of parenting going on. But together, they complemented each other so well. And it was I just knew that they were always there for me during those frustrating moments, those highs, those lows, quite literally, obviously, where it's just they were there All the while, but just like an amazing support system site. I think they went about it slightly differently. But we're, you know, managed to still be on the same page because, you know, nobody handles You know, one set situation quite the same. So, I was just incredibly fortunate. We just got informed, it's like we figured out what it was and there was a moment of kind of bowing our heads and being frustrated being sad. And then we were like, Alright, what do we do about this and got in the hospital and took care of and met up with all the doctors and got assigned the endocrinologist and and took it from there. Yeah,

Stacey Simms 9:53
your parents must have given you a long rope because five years later, you auditioned for American Idol right when you're 16

Kevin Covais 9:59
I was a baby I mean, I'm still a baby. I'm just an older baby. I'm still probably just as immature. But now I'm in my 30s so I don't really get away with as much. I I was 16 years old SJC when I did the show, I can't believe I did it at all. And I can't believe I did it when I was when I didn't know any more. I was just a child. Yeah. It's so

Stacey Simms 10:17
funny. So okay, so you're my son's age.

Kevin Covais 10:23
And your son's a child. I'm sure he's way more mature than I was.

Stacey Simms 10:28
But, you know, you did let him just go. You know, he took an international trip for a month but he was with you. But he was with a bunch of people who, you know, we're we felt very safe with of course, what was the deal with American Idol because you didn't just go to one city, right? I mean, audition different cities take us kind of through what happened.

Kevin Covais 10:45
It was just the journey of a lifetime at 16. I audition in New York. I'm from from Levittown, New York, Long Island, New York, and I audition up in Boston, I turned 16. And as I tell the story, my mom and I would watch idol from the Kelly Clarkson days. I ultimately was on season five. But you know, Kelly Clarkson wins the show, season one, my mom and I, it's must see TV. We tune in every week to watch the show. And my father was never a big fan. And I was a singer, around the same time that I was diagnosed with diabetes at the age of 11. That's kind of when I joined the chorus and developed a love for singing and acting in the school plays and whatnot. And he'd walked through the room and we'd be watching idol. And I would tell him, I said, you know, one day I'm going to do this show. And he's like, yeah, okay, we'll see. And I turned 16. And again, just to echo how incredibly supportive my parents have always been, they've always been by my side, I turned 16. I go up to Boston to audition for the show. When there were no tri state area auditions in the Greater New York area. They take me up to Boston, they take me up to Gillette Stadium where the New England Patriots play, they're having massive auditions. 15 tents set up on a field, a judge at each tent and forward a time that bringing us down and they say Sing, sing, sing, sing, you sing a little bit of a song, they cut you off whenever they feel like you either make it or they send you to the exits, we see a herd of people go into the exits. And I was one of the lucky few that day who they said you know what, we're gonna give you another audition, we'll come back and see the executive producers, so on and so forth all the way up to the main judges in the city of Boston, I see the original three of Simon cow, Paula Abdul, Randy Jackson. And eventually I make my way out to Hollywood. I get past that round, and made it to Hollywood. It was my first time ever on the west coast. I get to go and I'm one of maybe 180 people auditioning out in Hollywood to try to get on those live shows where ultimately I landed and Gosh, got to somehow got to the top 12 my seats I don't even know I don't even it was honestly Stacy, it was all blur. I don't even know how I did it. I don't know. I mean, I remember it. But it was just such a roller coaster and such an emotional ride in such an exciting ride my lights? Yeah.

Stacey Simms 12:39
When I'm researching to talk to you, you know, going through the American Idol season five and kind of looking at what was written around that time. There's no mention of you having diabetes?

Kevin Covais 12:50
No, no, you hiding it.

Stacey Simms 12:57
Right back to Kevin finishing that thought. But first Diabetes Connections is brought to you by Dario health. And one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of strips, do you need some direction or encouragement going forward with your diabetes management, with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my dario.com forward slash diabetes dash connections. Now back to Kevin talking about why he didn't share his type one with the American Idol audience.

Kevin Covais 13:46
Absolutely not hiding it. This is how little I just knew about I just wasn't aware of anything. I was so green to the experience that like now as an actor of 10 plus years as a mainly transition to acting at this point, which I'm sure we'll get to a bit in a little bit. I didn't think about it from a perspective of Oh, wow, what a stage to raise awareness for this thing. I was on the show. I made it to the top 12. And one of my best friends from the show is Elliot Yamin, fellow type one, and you know, great guy, great personality and just just a heck of a voice. Oh my god, the guy can sing the doors off the place. He's unbelievable. And we auditioned in Boston together. I was so nervous until my final few weeks performing live on the show. I just think I went in and I would do the interviews and I would do this and I would do that. And it wouldn't even occur to me like man, you should really bring this up. I wasn't hiding it. I wasn't ashamed. I think for me, it was just such a normal part of my life that I'd been accustomed to for five years. And I was like, Oh, yeah, well, I'm you know, I'm no different than anyone else. I'm just dealing with my type 1 diabetes, you know, all the while. And it's it's a regret not from a sense because again, I wasn't hiding it. It's a regret because I realized how big that platform was and Oh man, I should have said something. And it was and it wasn't until after the fact that I was like oh wow, there's like a lot of opportunity here and when I you know start to do very As events for the jdrf are really dive into work with the Diabetes Research Institute several years thereafter. It wasn't until that point, when I kind of got older. I was like, Man, this is an incredible opportunity to raise awareness. And, you know, use your platform. And I wish I could go back and tell 16 year old Kevin that I really wish I could.

Stacey Simms 15:16
Well, I wasn't even thinking of it in terms of advocacy, which is a terrific point that you make, but I was thinking about it as your 16. And, you know, to say, Well, I need extra help, or I need you to know that. Although you weren't beeping at the time, you probably didn't have a CGM. No, not yet. Right. You might not just you know, and I think and I can totally understand that, because that's how my son is, you know, he'll tell people to be safe, you know, spending the night and we're not there. And he'll say, Here's to this and that, but he's not gonna say, hey, by the way, just as dropping into the conversation, yeah. I don't think a lot of 16 year olds who are let's just say it like that, I think. And you've already kind of mentioned it, it just seems like it was such a normal part of who you were. I think that's very commendable. I think that's great.

Kevin Covais 16:01
Thanks. Yeah, I'd like to think so as well. I'll tell you, every staff member on idol, the producer, the up to the producers, up to the big time people behind the show, they knew I had type one. I always made it a point to you know, school teachers, obviously, you're telling them okay, hey, look, if I need to go to the nurse, this is why I'm not. I'm not trying to get out of taking this exam. It's because I have a legitimate low right now. So the people in my life I was telling, it never occurred to me when the cameras started rolling to bring it up, because it just didn't occur to me. I was like, Oh, yeah, no, I'm telling the people that are directly affected in my life about this. It didn't, it didn't even dawn on me to inform the audience about

Stacey Simms 16:36
it. Did you have any issues on Idol with diabetes? And I did,

Kevin Covais 16:40
yeah. There's a story that stands out. I don't mean to laugh. It's just some hilarious stories. When we were laughing. We This is how we do it. This is how we deal sometimes, you know, you know, you know better than anyone as to why it's, it wasn't an issue, up until the live shows. Really, I think, for me, it was always Okay, we're testing constantly, we're making sure we're correcting prior to getting up for big performances, or whatever I got to perform during Hollywood week, I'm making sure I'm good to go in preparation for those performances. It wasn't until the third live show there were three weeks of semi finals on the show. And I get up there on the third week, and I'm waiting in the wings to be the next one up and I I know where my blood sugar is, you know, without the CGM. I'm one of the lucky ones who can, you know, 21 years of this thing I can tell where I am. If I'm running high in the two hundreds, I feel lousy, and I know it. I know where I'm at. If I'm low, and I have the shakes, and you know, you feel a little disoriented. I know that too. And I could feel myself dropping and dropping quickly. But I'm up on stage and it's live television. So I go up and I perform I perform. Don McLean's stories of Vincent starry, Starry Night old ballad that one of my favorites, Josh Groban read it, and in more recent years, and I'm singing, and I just like, I can't wait for this thing to be over. I can't wait to stop singing and get the critiques from the judges that I'm not even gonna really listen to because I got to get off the stage and I got to get some juice or I gotta get some tablets. I gotta take care of this. It was the most surreal thing to be experiencing that in that moment. I got through it. And the performance wasn't terrible. I think it was, I think was one of my better ones. So I was on for five weeks. And I I put it up in the maybe on the top two or three of them. And yeah, but that did happen on live television, which was just the most surreal thing. Yeah.

Stacey Simms 18:18
Wow. When you got off the stage Did you like eat everything? Oh, yeah.

Kevin Covais 18:22
I went to town state. Oh, yeah. Are you kidding me? I was like, Yeah, let's go. I was just, it was bizarre. It was just a bizarre, but it was just a wild, wild thing to experience. And that's kind of telling for anyone who deals with this is that you can prepare to the best of your abilities. And that you know, that unexpected lower high could still come about, you just have to do your best but there's no there was no shame. I didn't feel any shame after that. I know. Look, we're all human. And this is this is a normal part of the day in and day out experience. It's just so unique that to be in the position that I was in to have experienced that at that moment was very unique. Yeah, yeah, that's

Stacey Simms 18:57
interesting, too. That I forgot. Elliot. Yeah, I mean, was the same season.

Kevin Covais 19:00
Oh, yeah. Yeah, yeah. Oh, man. He was I was rooting for him after I eventually got bounced and got kicked out. You know, after I got eliminated from the show. I was I couldn't get kicked off now. I was a good kid. After I got eliminated from the show. I was I was rooting for Elliot anyway not I mean, obviously the bond we shared as as he was a fellow type one and we you know, related and became fast friends over that, but I just thought he had the best voice that of anyone that sees and I thought his voice was you know, another league but it was a it was a heck of a year and a heck of a ride for it really was

Stacey Simms 19:30
Do you still forgive me? I don't know if it's even on the air. Do you still watch

Kevin Covais 19:33
idol please? It is not really Oh, no, it's been going on a while sometimes it's like sometimes you gotta know when to let go. I like emotionally said goodbye to the show. I think it was about five or six years ago now when when Fox had its last airing of the show. So I kind of had my emotional goodbye with the show. Then I had a bunch of friends over to my place and we watched it and we were you know we're they were laughing about stuff. Remember in my time on the show years ago, we had a we had a grand time and then you Goes via Idol s off the air and then ABC is picking it up. Because you know, why not? Why not pick it up? And they've had some successes with the ABC run and some some very talented people on the show but I think there's just there's so many options now so many things to watch. You got the voice you got to America's Got Talent, things of that nature. It's tough. It's tough to keep up with all of them now stuck to keep up. Yeah.

Stacey Simms 20:20
So right. So after idol, you change from being a singer to acting? What What happened? Like, what were some of your first jobs. I know you were at the Disney Channel, and you've been guest starring spots. So if you could tell me, like when you started?

Kevin Covais 20:32
Yeah, I saw I finish idol. And I'm really honest about these things. I thought, going into the Idol experience as everyone does. I want to be a recording artist, I want to make records and I want to do this. And my love for music. And my love for singing is never escaped. It's really I'm just being honest, it's more of a hobby. At this point. It's more of something for me. And if I record something, it's more for me or potentially to work, collaborate with friends or right with fellow musician, friends. But I got into the acting I remember I got done with idol and I got management back, I found representation back home in New York, there was a real interest, I think people really found me to be a bit of a character on the show. And in a good way, not a bad way, of course. And that led to auditions. And I started going out in my first movie was a real silly kind of raunchy comedy, I wouldn't recommend anyone listening to this podcast, watch it, it was a movie called college. It was with a Nickelodeon star by the name of Drake Bell and various other funny people. And, you know, really funny people in the cast. And we had a blast making it. And this was my first taste of a film. And I came to know that Deb Hagen, our director on that project, she was at home with her family reading the script of this movie, she'd just been assigned as the director. And she's watching idol with her family and I'm on the show. And she's reading the script. And there's this you know, kind of nerdy character named Morris super this kid with, you know, part of gold sweet kid, but you know, just kind of reserved and whatnot. She's reading the character, and she's looking at me on the TV, and she's like, Man, this kid would be, I want this kid to play this role. And I never knew this and takes a while to make a movie. And about a year later, I within that year, I get done with Idol I go back home, I'm doing my senior year of high school now, because I did Idol as a junior in high school. I'm back in Levittown, New York, I'm back at Island trees, high school over there. And, and I'm doing self tape auditions, I get a manager at home who starts sending me out for acting, saying there'd be quite a bit of interest if I were to pursue this. And I put myself down for this movie college and put a self tape down and I got the roll, I got the roll, which offers self tape, which is like, You're so lucky to get that it's a rarity. And I was very fortunate. And I had a fun time making that one. And then that led to a bunch of other opportunities got to work with Lindsay Lohan on a on a television movie called labor pains, which was a blast, a really stacked comedic cast. And that one, you know, that's silly movie, but a lot of fun. And then since then, the big one was good luck, Charlie, for me got to be on the Disney Channel and work on eight episodes of good luck, Charlie, in the early 2010s. And, and then from there, just a slew of fun guest stars. And I've just I love it. I love every minute of it. I don't know how it all came about. I think for me, I always love to act adjust as much as I love to sing. But I never I wasn't savvy enough at the time of doing idol at 16. Again, I was so green, I didn't even think like oh, you can use this idol platform to maybe swing a few meetings or this or that and try to try to get your way into acting. I don't even think like that. If again, if it was today, if I was doing that in my 20s or if I was doing that today in my early 30s. Like obviously I would have had that mindset but you know, I didn't know I didn't know anything like that. So but just so fortunate that it came about and I love it. I love being on set. I love playing these characters escaping into these fun people that are nothing like me. It's fun.

Stacey Simms 23:35
Yeah. And you've been you know, you continually work I mean, yeah, it's as you said their guest starring roles and you know, but they seem so fun. You were This is us. 68 whiskey, you know, the Yeah, I think the last thing I saw was NCIS LA or Los Angeles. I saw you did like a theme during COVID. How is production been? Have you been able to do anything? That's

Kevin Covais 23:57
You know what? That's a great question. My last two roles, which as you previously mentioned it NCIS Los Angeles I got to do a again small role but part but a scene with with great actors and Chris O'Donnell and LL Cool J the leads of the show. And that was just so trippy because you know, you grew up watching lol and then you get to do a scene with them. I like that. It's like I've done this for over 10 years and you still get in those situations and you play it cool, but it's like I'm working with frickin Oh, cool. J This is not. But that was interesting. I'll tell you as it pertains to COVID they were coming off a hiatus to show and this was I believe this was their first episode of production back since COVID. I don't think I'm making that up. We go and we film at the Paramount lot you know the famous Paramount live in Los Angeles and and they took so many precautions. It's unbelievable. When you have a small you know, co star role such as myself, they give you a tiny little trailer whatnot. And everything's placed outside the trailer, your wardrobe, your sides like there. Nobody's coming into your trailer. It was a whole new world. Obviously you're wearing a mask the entirety of the time. You're filming just a little funny story, my character is wearing like some sort of alligator costume. He's like a sign spinner on the corner of the street or whatever, who they take in for interrogation at the NCIS headquarters in LA. And so they take me in and I'm still wearing this thing. And for the purpose of the scene, I have the first line and I'm wearing a mask during rehearsal we get in and obviously, you're not shaking hands with anyone, you're just meeting you're there for a day. It's a quick day, and I'm wearing a mask in this like weird out, you know, this weird, like lizard costume or whatnot. And then when they they start rolling, they're like, Okay, everybody take your masks off. Kevin, you can take the mask off. I'm like, okay, so I, I don't know what's going on. I'm just following their lead. I take the mask off. And I'm like, Where do I put this thing? I don't pocket somewhere in a lizard costume. I just like kind of stick it under my button, keep going with the scene. And then they call action and I run a scene with a local j was nuts. It was crazy. I was like, but it's a whole new world, you know. So they take the precautions, but then they call to action and you're back in a fictitious world that apparently doesn't have COVID-19 in it. And it was just bizarre. I was fortunate I had a small role A few weeks later on a show that is yet to be released a show with Elizabeth Shue called on the verge which I believe is upcoming on Netflix. And I didn't get to shoot a scene with her unfortunately, because she's amazing. But I had a really fun scene as a whole as like a funny, wholefoods worker, and I got to shoot on on that set. And again, they're taking all the precautions, you know, no contact and you're getting COVID tested every other day, because they need assurances that everyone on that sets safe. Everyone on that said this was pre vaccination. This was at the end of last year when I worked at magic, so nobody been vaccinated. Yep, you have to have assurances that nobody is has tested positive for covid. Otherwise, you got to shut the whole thing down. It was wild. But you know, it's a whole new world out there. And we got to be we got to be safe. And we got to be cautious, especially those of us with pre existing conditions, like type one. Yeah.

Stacey Simms 26:47
All right. So we're gonna list in the show notes. We're gonna put your IMDb so people can figure out that they've already seen you a bunch of times. Yeah. You know, like, my husband. And this is? Well, it's not really embarrassing, but my husband is a big Transformers fan. Like all the Transformers movie. So I know you've been in those. So now I got to go back and like freeze frame and find you.

Kevin Covais 27:07
Yeah, I just did one of the transformers. I had a funny, memorable scene with I think memorable with Mark Wahlberg and he would have been the fourth one. So it was I can't even keep track of it. He would know. I don't know. It was called Transformers Age of Extinction. Oh, yeah. The

Stacey Simms 27:22
one with the dinosaur. Yeah, there's

Kevin Covais 27:24
been five total, I believe. Yes, there's dinosaurs. Because Why not? Because anything goes in the transformers. You notice out? Yeah. And I think Shiloh buff did the first three. And then Mark Wahlberg took over as the lead for the next couple. And I was in the fourth one. And yeah, that was nuts. I had, it was that was such a surreal experience to

Stacey Simms 27:42
get working on a big, big, big budget. That was the hugest gi crazy. I mean, it must have been wild.

Kevin Covais 27:48
That was the hugest thing getting to shoot a scene with Mark Wahlberg and being directed by the very, very animated Michael Bay who was was cool to me, but it was just like it was I felt like pinch. I was like, how am I here right now? How did I get here? Like working on this with like, huge names like This is nuts. Yeah, heck of a time. It was a lot of fun. That's awesome.

Stacey Simms 28:07
Well, I first met you ever saw you it friends for life? Yeah. You were a special guest one year. I don't think we met the first year that I saw you speak. And then you know, you've you've basically Kevin, they kind of they really adopted you. You were on staff. They did. Tell me a little bit about how you found the folks at friends for life, which I'm sure as you're listening, you're familiar with. They talk about it all the time. But the largest family diabetes conference in probably in the world at this point.

Kevin Covais 28:33
Amazing. And the amazing work that they do over children with diabetes. Yeah, I was like you said I was kind of a stray dog who they like led into the house. They're like, Alright, well, let's domesticate this guy. And maybe he can become a part of this. I'm so blessed. One of my, you know, dearest friends, is Tom Kalia from the Diabetes Research Institute diabetes dad, as he's known. And Tom is one of the sweetest most generous guys I ever met. And I did American Idol, not to take it back to Idol . But I did idol and he reached out to my father because I was still a kid at the time. And he was a fellow long Islander and said, You know, I take part in this conference, and they do amazing work. And I would love to bring Kevin down. I had the summer free. I didn't make the American Idol tour. So I had this summer for and, and he asked to if I would come down to perform at the banquet for the 2006 friends for life conference in Orlando, Florida. And I was very excited. But I didn't know what I was getting into. I didn't know what this conference was. I didn't know that such an amazing organization existed. So I go down and I sing You Raise Me Up which was the Joshua again to bring up Josh Groban. The song that I sang on idol audition with and I sing it and it was just amazing. I had such an incredible time. And I learned more about this, what this conference was and learn of the support system that people had. And I think I was just so naive. I didn't realize that something like this even existed. And it just opened up my eyes. It opened up my eyes to how many people care about people in this world that I knew, you know, to an extent you know, around home in New York, you know, when I met these People when I met Jeff Hitchcock, when I met Laura, and all these amazing Lord bility, and all these amazing people at the conference, I was instantly just felt like family, I would go back several years thereafter, I think, in 2009, and then again, maybe around 2012 2013 as a special guest. And I kept going back as a special guest. And it was fun, because initially, I was there as kind of a guest who was promoting Idol and then, and then a younger generation of the kids that would go, I'd get to be a special guest and talk about good luck, Charlie on the Disney Channel. And that was a great fun, but then I would go and I would take part in in the conference a little bit. And then I would just kind of find myself walking around and saying hi to people and popping into the, you know, the exhibition room and popping into sports Central and playing basketball, the kids and I was like, I want to do more here, I want to do more. I got in touch with Laura. And they ended up asking me the next year like we've had just a special guest, would you want to come back and be a staff member here? And I was like, absolutely. Like I just wanted to, I wanted a bigger role. And they were so gracious as to offer me one. And now I'm just like part of the gang, which is always more fun for me anyway, because I never feel important. I never feel special. Like it's just like, I'm just one of the gang. I'm just like you. I'm just like this kid who has it. I'm just like this, you know, it's unbelievable getting to go there. Every year, they asked me to be on the team staff. And I think this past summer, yeah, was my fourth, fourth year on the team staff and I just want to go back every year, every year, they'll have me I want to go back out.

Stacey Simms 31:15
It is amazing when you don't have that community connection, and then you find it, we were kind of by ourselves. I live near Charlotte, but I don't live in Charlotte. And it seems like everybody I knew with type one with kids with type one lived further away from me. And then in 2010, children with diabetes brought a conference to Charlotte, amazing. They used to have these regional focus on technology conferences, and I went, and that was where I realized, oh my gosh, there's all these other people. There's this community, and it really inspired me to get more connected. And now I'm so lucky, we have people not, you know, you hate to have more people diagnosed, but we have four people in my area, we have, you know, more connections. So I hear you, but working with the teams, as you said, Yes, I think that's a pretty hard group. What do you do? How do you kind of get through them or talk to them?

Kevin Covais 32:01
It can be it can be I love it. Personally, I think I'd be more nervous to work with the younger kids, just in terms of not just holding their attention or whatnot, I think back to being 16. And I think back to the time I did I don't it's such a vulnerable time in your life. I think that more than anything else is that teenagers might act out or whatnot. But it's just stemming from insecurities or feelings of vulnerability, but a vulnerability about certain things in their life. And it's like, you just kind of have to, you know, give them a pass for that and try to break through the best you can. I mean, that's what I do. I you know, I never grew up a camp counselor. I never did any of that. So when I go to this thing, I look to friends of mine who were in the team group. Now, some of my best friends now who are on the team staff with me that I've met at the conference throughout the years. And I watched them do and I'm like trying to take notes because some of them are really good. And I'm like, yeah, it's tough. But it's tough to break through sometimes I think, yeah.

Stacey Simms 32:50
I'd be curious to as a parent of a team, I don't know, one parent of a kid with type one of a teenager with type one who says, Oh, my kid is perfect. Right? They're doing such a great job. I'm so happy with all of their marriage course. You know. And I, I'm wondering if there's any advice that you have as being somebody who is closer to being 16 than I am? Certainly, and who has worked with these kids, you know, what can we as parents do to support them?

Kevin Covais 33:15
That's an incredible question. I think I was naive, going into all this to see not that I didn't have struggles, but to have a support system at home like I did, where I think my parents, they were always aware of what's going on in my life. But I think it's such a give and take where obviously, my father, my mother spend 24 hours a day worrying about me as a kid with my diabetes, but not letting it show all the time and giving your child the space to sort of operate and trusting them in a way take off the training wheels and trust them to make their own decisions. Obviously, if if they need you, you're there. But also give them space, but don't smother them. I guess I it's a tough road. You know, I'm not a parent. So I'm not one to really comment on it. I can only approach it from that former teen perspective with my parents was I think my parents always did an amazing job on idol as well. I saw stage parents on idol I saw, you know, parents who were like, oh, you're gonna sing this song you're gonna do that. My folks always said to me, you know, Kevin, we're here for you. We love you. If you need help with something, let us know. But this is your thing. Obviously, you can't maybe take such a lacks approach in a certain way with diabetes, but it's informing your child to the best of your abilities always being present, always being there, but also letting them breathe and make their own decisions. I think if you can find that balance, it's really important because you see kids who don't necessarily have that are unique kids and I was naive. I thought everyone was like me who had and I thought everyone was like, you know had their ups and their downs and but good days and bad. But sometimes it's a rough road. And I I'd open my eyes to that just like going to the conference and just like going around and meeting people who have it. It's Yeah, it's not easy though. That's for sure.

Stacey Simms 34:47
Before I let you go, Kevin, your type 1 diabetes if I've got my math right, is about to turn 21. Oh, yeah.

Kevin Covais 34:54
Yeah, it's about Yeah. I could go out and go to the bars. type one. Yeah, I won't. But

Stacey Simms 35:02
I'm certainly not going to ask you to, you know, to sum everything up and tell us what you've learned or you know, anything like that. But I am curious, you know, you now as I said, you use a CGM, you use it, you still have injections, you use multiple daily injections, but it's different insulin. You know, things have come a long way you found the community to support you. Anything you would tell your 11 year old self, about my guts done, you know what you've been through,

Kevin Covais 35:26
I'd say Congrats. I mean, it's been a wild ride. And like, I haven't done things perfectly, and nobody's perfect. I think you got to give yourself a break. I think I've spent a lot of times kind of hard on myself from like a career perspective, as a singer, as an actor. And especially with my type one, it's easy to be hard on yourself, it's easy to, I think we go through these like ups and downs with this with this thing that we live with every day of our lives. And I can recall, like low points of like a really bad low or, you know, episodes that we all sort of experienced with this thing from time to time. I recall, like the immediate thing you feel is ashamed, ashamed that you allowed it to get to that point, I think if I could tell my younger self something, it's like, don't be ashamed. This is a part of the ride. Some days are amazing, some day stink, it's just a fact. No one's gonna be perfect. 19 you know, 100% of the time, it's just not it's not possible. So I think I would tell my younger self, I would say congratulations on achieving some of the stuff you've done, but also like, where to go, just, you know, get getting through it. And getting through this grind, you know? Yeah, I do know that. You know what, you know. So well. Yeah. Yeah.

Stacey Simms 36:28
I know it as a parent, which is different story. But that's fabulous. too.

Kevin Covais 36:32
Huge way to know it. Yeah. Well, Kevin, thank you so much. But it just thank you for having me. Yeah. Oh, it's

Stacey Simms 36:37
been wonderful to talk to you. I hope you'll come back. Keep us posted. Let us look for you. I will Yeah. And hopefully time will go fast. And we'll see you next summer friends for life.

Kevin Covais 36:47
That'd be amazing. Thank you so much for having me on. I really appreciate it. You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms 37:01
More information about Kevin and links to what he's doing now. And links to some performances from idol back at season five at Diabetes connections.com. Every episode from 2020 on has a transcription with it as well. I'm trying to go back and fill in the blanks on the previous episodes, but boy, there are a lot of them. So I'm doing the best I can. But you can always find the information that you need. Hopefully, for each episode, they're at Diabetes connections.com and pop in the Facebook group. If you have any particular questions for me, you can always reach me at Stacey at Diabetes connections.com
and Diabetes Connections is brought to you by Dexcom. And I was watching only murders in the building the other night. Are you watching this show? It's on Hulu. So not everybody gets that. But it's such a fun and interesting comedy. It's not quite as funny and silly as I thought it was gonna be. And that's not a bad thing with Steve Martin and Martin Short and Selena Gomez. And the reason I started watching it no surprise is because they have a podcast and some of the podcasting stuff is very silly. But it's fine. I love it. It's not really too far fetched. Let's just put it that way. And it's just a good show. But I got way off the subject. We were watching this I was watching by myself actually, when I got a Dexcom alert, and Benny was upstairs. He was playing video games or doing whatever he's doing upstairs. And you know, I was just thinking about how we had blood sugar checks on a timer, we had a schedule. I'm sure a lot of you did this too. Before CGM. We would check doing the finger stick the same time every day at home and at school. And whenever extra we needed to. It's amazing to think about how much our diabetes management has changed with share and follow. I mean, it didn't stop the show to get up and check him. I knew what was going on, I could decide whether to text him or if I needed to go upstairs and help them out using the share and follow apps have helped us talk less about diabetes, which I never thought what happened with a teenager, and he loves that part to trust me. That's what's so great about the Dexcom system. I think for the caregiver, the spouse, the friend, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow, separate follow up required, learn more, go to Diabetes connections.com and click on the Dexcom logo.
Quick look ahead and a bit of a change in the schedule. I was set to go like many of you to the children with diabetes conference happening in White Plains, New York, the weekend of October 9, but they have moved that to a virtual conference. And I totally understand you know, you've got lots of kids uncertain situation with delta. So that will be in November. Now it is a virtual event. I will put information in the show notes. You can find out more about that we did virtual with them. Gosh, really all of 2020 of course, and it's a lot of fun. I think they do a great job. And one of the cool things they figured out early at friends for life and children with diabetes. You know children's diabetes is the organization friends for life is the event. They figured out how to help people socialize outside of the speeches and the reports and the talking which are all great. The presentations, I think are very valuable. But for me, the socializing is a huge part of why I enjoy these things. conferences, and they have these little virtual hallways where parents can drop in kids can drop in teenagers, young adults, that kind of thing. So worth checking out just for that. I'm disappointed, obviously, that we're not in person. But I'm still going to New York because this conference is 15 minutes from where my sister lives. And I haven't seen her in ages. So I'm going to go see her and hang out. And hopefully, Melissa, if you're listening, and I'm sure you're not, we're going to all the places where we ate in high school that weekend, so be prepared. We're going to Maria's pizza, we're going to diner, we're gonna make a list. So we grew up not too far from where she lives now. So that should be a lot of fun
Later in the month, I'm going to be in Scottsdale, Arizona for she podcasts, which is a terrific female podcasting conference, as you would imagine, I'm really excited about that. And look, we'll just have to wait and see how these things go. Because certainly, events are touching go at this point, diabetes events, people are much more cautious and rightfully so. So we'll wait and see. But hey, that doesn't mean that we can't hang out. We can socialize. My Local Group is doing stuff online. I'm happy to come and speak to your group, virtually. I've still got my book to clinic program. I am working on Book Two. I am so excited. So still a lot going on. But man, I know I can't wait to read. We're gonna get back to normal. I don't know. But I'd like to get back to something else. Something we're socialized more. We hug more with each other more. Hang in there. Oh, my goodness.
Thank you to my editor John Bukenas from auto editing solutions. Thank you so much for listening. I've got in the news every Wednesday live on Facebook, and then we turn that into an audio podcast episode every Friday. So please come back and join me for that. I'm Stacey Simms. I'll see you in a couple of days until then be kind to yourself.
Benny:
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Aug 24, 2021

Kyle Banks is a Broadway performer – singer, dancer, actor – he was diagnosed with type 1  while in a production of the Lion King and had to figure out – pretty much on his own – how to  manage on stage. Kyle explains how he learned what he needed to do to perform at his best and shares stories about his time on stage with T1D. Now Kyle has started a foundation to help get diabetes technology into the hands of more people who need it.

Learn more about KylerCares

Plus, some feedback about our last episode.. and a little bit about back to school.

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This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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Stacey Simms  0:00

Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, Kyle Banks is a Broadway performer, singer dancer actor who's diagnosed with type one while in a production of The Lion King and had to figure out pretty much zone how to manage on stage,

 

Kyle Banks  0:41

I would have to go into work with my glucose hovering around 33 50. And by either intermission or the end of the show, my glucose would crash and I would experience these crazy hypoglycemic episodes. And it was really scary for a while.

 

Stacey Simms  0:58

He's come a long way, Kyle explains how he learned what he needed to do to perform at his best. And now Kyle has started a foundation to help get diabetes technology into the hands of more people who need it.

Plus, I got some feedback from you about our last episode. I'll share that and a little bit about back to school. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. Always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. so much great feedback from our last episode where I interviewed my son Benny diagnosed before he was two now he's 16. And he went away for a month this summer to Israel without us with a non-diabetes camp program. So if you've listened, and you send me feedback, I really appreciate it. As I shared during that episode, I was nervous because we are far from perfect. There was funny bits too. I'll share a few of those after the interview. But guys, really, thank you so much. It is amazing to have that kind of support. I really appreciate you.

I met Kyle banks at friends for life this summer lucky enough to travel to that in person conference, Kyle gave a welcome speech to new families that were there for the first time. And I knew I had to talk to him. But I heard from a bunch of families who came up to me later, instead of you that interview, Kyle, you know what a great voice. And boy does he have a great voice and what a terrific story. He was diagnosed with type one, nearly six years ago in November of 2015. And as you'll hear the story he was performing, he had made his career on Broadway. And if To me, it just seems like performing in that kind of venue on with that kind of energy you need to put in. It's like being a professional athlete. So I was very interested to talk to him. And I was really surprised, and you may be too as you listen, to hear how he started off with truly very little guidance. Of course, he has come a long way. And he shares how he did it, where he turned for advice, what he's using now. And he also talks about his foundation, and that is Kyler cares. We're going to talk about the benefit concert that helped that foundation from Broadway with love. It's called I'll link that up at Diabetes connections.com and you could watch really the incredible performances very entertaining. I am gonna play a clip of Kyle singing from that in just a moment and then we're gonna go right into the interview.

But first Diabetes Connections is brought to you by Gvoke Hypopen, you know, low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're going to pass out there are a lot of symptoms they can be different for everybody. I'm so glad we have a different option to treat very low blood sugar Gvoke Hypopen it's the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed ready to go with no visible needle before Gvoke people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon.com slash risk

 

(Kyle sings “Summer Time”)

 

Stacey Simms  5:04

Kyle, thank you so much for joining me. I'm really excited to talk to you. Your story is so unique. Thanks for coming on the show.

 

Kyle Banks  5:12

Thanks for having me. I'm excited to be a part of the show for sure.

 

Stacey Simms  5:15

That's great. We have so much to talk about. Let me just start if I could, at the beginning, your diagnosis story happened. While you were you were living your dream, right you were performing on on Broadway, you were touring, tell me about when you were diagnosed with diabetes.

 

Kyle Banks  5:32

Well, I was diagnosed in November of 2015. And I'm an actor, vocalist. And so I usually between like the Broadway cast and the touring company of The Lion King, and I was on tour at the time, and we were touring like Canada and California. And I just begin feeling having these crazy symptoms, like exhaustion and constant the need the urge to constantly urinate in, I would really scared me to death was the fact that I lost 30 pounds over the course of like three weeks. And so that was the trigger that made me go to the doctor to see what was going on with me. And that's when I was told that spective that I was diabetic based on my glucose test that that yet administered in the urgent care office, unfortunately, was on steroids at the time. So the physician that was treating me suspected that maybe steroid induced type two diabetes Oh, wow. So he prescribed, prescribed Metformin for me and told me, he suggested I go to the emergency room, but my response was, but have showed a knife so as possible, like what can we do to get through this. So I picked up my prescription and Metformin and went to the show to the theater, still feeling awful. And over the course of the next three weeks, of course, the Metformin did absolutely nothing to help with the symptoms that I was experiencing. And that landed me in the hospital for three days. And that's when I was properly diagnosed with Type One Diabetes. But still, up until being hospitalized, I was working and doing the show, which was looking back on it, which was really crazy, because it shows the intense at high intensity shows a lot of a lot of energy, most of which I did not have

 

Stacey Simms  7:40

let me just jump in. Because we're going to talk about performing on Broadway and what that does to your body in the energy you need. The Lion King, which we've been fortunate enough to see is nonstop What was it like during that time? Do you can you share I mean, I can't even imagine you must have slept all day, and just performed the best you could have been gone right back to bed.

 

Kyle Banks  8:01

Yeah, that was my life. Literally in bed all day, wow. Up until the time I would go to work, strike myself into the theater. And usually we're running around during the entire show, just acting. Crazy. You know, the cast is so much the show so much fun to be a part of being in the cast. And then the Quraan camaraderie backstage during the show, the energy is always high and festive. And so of course that's participated in none of that when I wasn't on stage, I was like in my dressing room trying to just replenish any amount of strength that I could or sitting in my station where we get stressed. While the show was happening, it was definitely a huge struggle pushing through just that time. Even after my diagnosis, it took a while for my energy to return. Because my glucose levels was so all over the place. When I was diagnosed one of the crate I you shared with me a bit about your son's experience and the fact that he had amazing doctors that he had access to the same thing with me. But you know, my doctors were not able to tell me once they prescribed insulin for me and showed me how to incorporate that into like the management of diabetes, that they did not share with me the struggles that I would have taken insulin and being so active. That was something that I had to figure out on my own. So

 

Stacey Simms  9:36

to give you a prescription for insulin, I assume they put you on shots and send you back out to perform it sounds like with very little instruction of, you know, exercise is going to bring you down and eating is going to kind of level you out or I don't even know. So when you got back to your first weeks or months of performances. Do you mind sharing a little of the trial and error I can't imagine as you've already said it, it wasn't a smooth transition back.

 

Kyle Banks  10:03

Oh, God, no, you know, it's crazy because I actually went to New Orleans to travel to New Orleans to visit my mom's doctor. And she told me to go to the emergency room. And that's when I was hospitalized for three days. So then once I was released, I flew to Denver where the show and jumped right back into the show with now my new regimen for diabetes management, which included finger pricks, which I would do like sometimes 12 or 12 finger prints during the show. And this insulin regimen, that immediately after the first show, I remember my glucose crashed to like the low 20s. And this became a pretty consistent situation where I would have to go into work with my glucose hovering around 303 50. by either intermission or the end of the show, my glucose would crash and I would experienced these crazy hypoglycemic episodes. And it was really scary for a while and this went on for months. And I knew that I just could not continue in this route, because I was reading that, you know, the fluctuations really dangerous, and not only could you know, pass out and have a seizure, if one's glucose goes too low, but you know, could also bring about complications as well. So I knew I had to figure out a better system for my lifestyle, and this new diagnosis that I was now living with. So after about nine months after, actually a full year after my diagnosis, the show just happened to travel to New Orleans. And we were there for a month at the end that I decided to take some time off from work to figure out how to better care for myself and to figure out if I would even be able to continue on performing at this level, and just really figure out a plan for my career.

 

Stacey Simms  12:05

Well, we know how the story ends that you are still performing and you can. So what made the difference? How did you figure it out?

 

Right back to Kyle answering that question. But first, Diabetes Connections is brought to you by Dario. And one of the things that makes diabetes management difficult for us that really annoys me and Benny, it isn't actually the big picture stuff. It's all those little tasks that add up. I mean, are you sick of running out of strips? Do you need some direction or encouragement going forward with your diabetes management? Would visibility into your trends help you on your wellness journey? The Daario diabetes success plan offers all of that and more No more waiting in line at the pharmacy no more searching online for answers number wondering about how you're doing with your blood sugar levels, find out more, go to my dario.com forward slash diabetes dash connections.

Now back to Kyle talking about how he figured out how to thrive on stage and avoid those huge lows.

 

Kyle Banks  13:09

Just having that time to the Lion King can be all consuming when you're doing the show between rehearsals and the actual show and the adrenaline that comes in being getting prepared for it. And once once the curtain comes down, so it doesn't really leave much time for other activities. But having the time off, I was able to just really do a lot of research digging online and social media. I discovered beyond type one and children with diabetes. And since a lot of various resources that could different podcasts, such as you or I listened to a lot of shows which people just talking about how they care for themselves. And this is such a varied cast of people talking about their experiences, athletes, teachers and a varied cast. So I was able to really just dig in and hear what other people were doing and take certain things that I could apply to to my situation and really helped me by when I went back to work. I now have a plan of action, I could test it out and discovered that it actually worked. I could go into work with my glucose hovering around 120. I make sure I had lots of snacks with me and a small meal that I would eat without insulin during intermission, and then another small meal after the show without insulin. And I was so shocked that I was able to I didn't experience the crashes anymore, and I'm able to just maintain my level of activity in a safe way and I'm just so thrilled that this information was available to me. I just had to go a little digging to find it.

 

Stacey Simms  15:03

So yeah, I mean, it sounds like if I'm hearing you correctly, that you went outside the traditional medical sphere, right, it sounds like you got all of your information from the community,

 

Kyle Banks  15:14

pretty much, pretty much, I knew that my situation is very different than the other patients that my physicians were treating. Initially, I thought, well, the way Kyla cares came about was, when I was in New Orleans, with the time off from work, I reached out also reached out to children's hospital because I figured that would be a great route to find out how they were basically, you know, in the theater with basically big kids running around, running around the theater. So I figured that it would be a lot of insight that maybe the kids or the kids would be able to give me as it relates to how they manage. And so I connected with Children's Hospital is already connected with them, because we do a lot of outreach through Disney. And with Shriners Hospital Children's Hospital, so it's rather easy to connect with them. And that's when I discovered that the kids were having horrific outcomes as well as it relates to glucose management. And I was really moved by the fact that the endocrinology team, stressing to me just the effects that this disease is having on communities of color, specifically kids of color, and how they were having different outcomes in their Caucasian patients. It really struck me and months after that initial meeting, I was just harping on the information that I was given. And that's how eventually, that's how coworkers came to be as a result of that meeting at Children's Hospital with the endocrinology team,

 

Stacey Simms  16:50

we're going to talk about Kyle cares. And we're going to come back to these disparities that are just, they're heartbreaking, and they are real, just to finish kind of on your experience, you're able to go back and perform. And as you said, you you kind of bounce on, if that's the right word, you kind of go back and forth between the Broadway cast the touring cast. I know, everything's messed up now because of COVID. But from from the time you went back, were you able to go back to the roles that you had been performing and loving before your diagnosis?

 

Kyle Banks  17:22

Yeah, I was, I'm just so happy to have been able to figure out how to do that safely. Because I did it for so many months. Luckily, without any horrific events happening, like me passing out on stage, or even behind the stage, for that matter, I was able to make it through that very scary time period, without any of that happening. And I'm very lucky to have that had a seizure with my glucose being so low so often. But yeah, I was able to figure out how to do it and how to continue doing all of the things that I love. And like I said it was the community making the information that so many people are just so eager to share online that really helped me push through

 

Stacey Simms  18:11

what technology Do you use now?

 

Kyle Banks  18:15

You Economy pod influence, and the Dexcom ci six, continuous glucose monitor?

 

Stacey Simms  18:22

Are you able to I think I know the answer to this, but are you able to kind of hide that stuff under your costumes? Or is it shown I'm curious what that looks like.

 

Kyle Banks  18:32

Um, you know, the wardrobe department at lion kings so supportive in just just extremely loving and nurturing through this whole period gluinos first outfit with my Omni pod, I was so concerned that it will cause problems for wardrobe. And when I brought it in and sold it to them on my own. It's like, Oh, that's no problem. So they made me flesh tone bands for my arm and for my abdomen that I could wear deserve scenes in the show where we repair on top. And it was pretty simple fix. Wow, that's great. Yeah, I think they made my slipcovers in like two minutes, like maybe like five minutes before the first show when I was wearing the really simple thing. That's cool. All right,

 

Stacey Simms  19:20

let's talk about Kyle cares. I am going to come back and ask you a lot of Broadway questions later. But let's talk about hierarchies. Right now. This is your nonprofit. As you mentioned, this provides grants you do a lot of work to get technology for children for young adults with type one. And I've done a little bit of reporting over the years, frankly, not as much as maybe we all need to be thinking about but some reporting on the racial and ethnic disparities, because it's really incredible when you dig into it. When you look at use of insulin pump technology. It's something where, you know, 1/5 of black children compared to white children use comes from my understanding of how Craig if I'm wrong, it's not only Because of income or education or insurance, you know, it's a question of, I don't know, you tell me I shouldn't be talking to you about this. Tell me what you have found out, what should we be thinking about?

 

Kyle Banks  20:11

Yeah, you know, that's that was my thought as well, when I, when we first began, like digging into Kyla cares and figuring out, you know how we wanted to help. providing grants that can go towards the technology would be the most beneficial route. And we soon discovered that, you know, the complicated the situation is, is much more complicated the financial barriers that keep people from accessing the technology, especially with kids, the stigma surrounding diabetes, specifically type 1 diabetes is really high. And a lot of kids, even the ones that have insurance and have their parents have the financial means to access to technologies, they still don't want to wear them because they don't want to feel different than their peers or don't want the attention that wearing these medical devices on their bodies brings into their lives, we've discovered that a lot of what is needed is one diabetes education, just making sure that families of color have like the basic information needed to care for themselves for a loved one living with the disease. You know, things like, you know, reinforcing the latest glucose management practices and why CG ins and pumps are beneficial and know ways to avoid hyperglycemia and hypoglycemia, pre bolusing movement like walking after meals and using incorporating more water into one's daily water intake as a way to flush excess glucose out simple things like this, we're finding that many parents and people living with the disease aren't aware of them, especially those that have been living with the disease for an extended period of time. It's sort of like they spaced out all of the latest information as it relates to care or management of this disease. So yeah, there's there's a lot of confidence building that needs to happen. Because we live in communities of color.

 

Stacey Simms  22:21

Do you think that and listen, I don't mean to put you on the spot, I know that you are not in you know, you're not an endocrinologist, you are not a perhaps an anthropologist, you know, as I said, these questions. But, you know, I think it's so important that we could try to talk about these things openly. And I wonder if, as you talk about better education for the patients and trying to get these kids and their families to, you know, be more accepting or look at different, you know, technology, not worry about fitting in. What about the endocrinologists themselves? Do you think that there is a problem or a situation here where, without meaning to even right, I mean, I'm not quite sure how to phrase this, Kyle. But I guess what I'm asking is, do you think they treat patients of color differently? They don't say, Hey, here's a CGM, or here's a pump, or here's, are you finding that sometimes the endos are not trusting their patients, I'm not even sure how to phrase it, but they're not, they're not giving them the opportunities to use the technology.

 

Kyle Banks  23:18

This is indeed true. I'm discovering that a lot of patients living with type one, especially people of color, are not even being offered the latest technology or technology in general, to help them with, with management. And I mean, there's so many things that goes into that there's a shortage of endocrinologist, so it's really hard to get an appointment, a lot of these endocrinologist worked. The cultural differences that many endocrinologist face when dealing with patients can be intense. In those moments, we only have 30 minutes or hours with someone to try and figure out why they're having so many problems, and just not being able to relate to the human being that's sitting in front of you and their lived experiences. It does create these situations that eventually lead to horrible outcomes for the patient. So and I'm not saying that, you know, all endocrinologists are approaching these situations with ill intent. I just think it's just the way things are set up right now or the way the way the system is set up. It's not serving the patients, especially specifically patients of color, well, those issues are, do exist and we need more endocrinologist of color, or more doctors to go into endocrinology into the field. And we need need some culturally sensitive training before in the cringe for occasion and in the prints that are treating people of color as well.

 

Stacey Simms  24:58

While these are tough issues. To talk about you made an interesting point earlier about the way you found the care that has helped you through the most, and that was through the community. And I think that that's a story that I've heard over and over and over again, by people who belong to all different types of racial, ethnic, socio economic, you know, different groups. We come when I've done this, I've said, Hey, I have something I want to try, I bring it to our endocrinologist. And he says, oh, great idea. Sure. He didn't suggest it, it doesn't mean that he's holding back something or trying to keep it from me. He just was, you know, for whatever reason, we have a fabulous endo, you know, that wasn't something that was on his radar. And I wonder, too, just in the last couple of years, we finally had these discussions about getting more people of color at conferences represented in the community, you know, jdrf, beyond type one, friends for life, as you mentioned, children with diabetes, you went to the children with diabetes friends for life conference in July, we met for about three seconds. So thanks for for that I really ran up. Kyle as he was trying to start speaking and I was like, you have to come on the show. It's great to meet you. But just being there, I always say we were so lucky, because I saw people in the community that looked just like my son. And my family, from the very beginning didn't even occur to me that we weren't presented a long way of saying, Kyle, going to friends for life this summer, I've got to assume that you met some families of color, that you felt that you were there to have these kinds of conversations, not just for that, I mean, you have so many great stories to tell. But let's start there. What was that like for you this summer,

 

Kyle Banks  26:31

it was an amazing experience. And children with diabetes is actually one of the organizations that were Kyla cares is partnered with, to expose more families of color to that experience. And we actually brought a few families from New Orleans to friends who live with me as well. So it was really great to see the process of opening up to being more engaged with management happened in real time. Like the kids that came with me, I watched them a little bit apprehensive at first going into like this very white space. And not knowing what was going to happen or what the experience would be like or, or even I tried my best to just explain the benefits of being there. But I think it's something that you have to experience firsthand to really get the gist of what it's about. So it was great to see the kids just open up and make other friends. Because many of these kids, they don't know any, they're the only person they know living with type 1 diabetes. So to see them make up a friends that living with type 1 diabetes or at dinner, you know, to hear them discuss, you know, pre bolusing. And you know how many carbs are in their meal and just for them to be able to have those companies have stations in this setting freely and not feel judged or not feel different. And by the end of it, you know, they're exchanging numbers they've made friends know, they're definitely more engaged in their care, checked in on a few of them. And they're just a lot more excited about being healthy and doing the things that they've learned that the takeaways from the conference, and I was excited to see them incorporating some of those lessons into their own self care. So because lets me know that no, this can work if we expose the kids, specifically kids of color if we expose them to these types of experiences that can have a positive effect in their lives and in their care.

 

Stacey Simms  28:42

Can I ask some Broadway type questions? Oh, cool. All right. Okay. Love it. Alright, so we were fortunate enough to see the Lion King on Broadway. And you know, what an exceptional show. I think most people are familiar with the incredible costumes, the staging, the dancing. I mean, it's just an incredible show. Tell us a little bit. You've played so many different parts in that as I'm looking through your biography, right? What have you played in that show?

 

Kyle Banks  29:06

Oh, my God, I played. I'm in the ensemble, or a lion king, but I've also understudied and fossa. And just being in the cast of liking has been just an amazing experience. It's been like a dream come true. And it's also it's one of it was one of my favorite cartoons outdoors, or Animated Movies of the child. So to be a part of the cast. It's just been a dream and being on Broadway and touring the country. I mean, I've been able to see. I mean, there aren't many cities that I haven't been to Wow. And Lion King is such a popular show that when we traveled to the city, we get to sit for three and four weeks at a time. So really get to golf ourselves in the communities in which we visit and that's actually been the best Part.

 

Stacey Simms  30:00

What's it like when you as the cast members come down the aisle, because that is a breathtaking moment for the audience. And we're looking at these incredible costumes and the carrot they never break character roll. Ooh, and on, there's got to be little kids backing you. Like what is that, like for you all

 

Kyle Banks  30:18

the excitement in the faces of people. I mean, the kids are one thing, but as the adults are adjusted to experience the show, I mean, I've had chrome men come to me to come up to me after the show with tears. And now it's just talking about how move they were by what they experienced on the from the stage. And it's really cool to be part of a show that is so engrained in, in our culture and so loved. So meaning it means so much to so many people. It's just been amazing experience being connected to the show,

 

Stacey Simms  30:55

unfortunately, I'm gonna guess you haven't performed in a while, what's the latest with COVID and performances?

 

Kyle Banks  31:01

Well, Lion King is opening on Broadway, September 14, and then the tour in October. But we made the decision that transitioning into like this, some of them new ventures in my life, one of which is Kyla cares, now over the pandemic. And having time off really allowed me to just dig into the work we're doing here at COVID cares in the partnerships that we've been able to establish with other organizations. And this work is so meaningful to me. Because I know personally, just the difficulties living with type 1 diabetes, but also, I personally experienced the triumphs of figuring out how to care for myself and still be a part of the things that bring me joy, and how to do that safely. want other kids who I want kids to know specifically that, you know, they can still do all of the things that they want to do in life and really just give them the tools they need to, to lead a healthy life and to be normal kids, you know, and for the adults that are that are living with this disease to know that know, if you engage in your care, things will begin to turn around. And it doesn't have to be this horrific experience where it's just a steady decline in health, you can still lead a healthy life with type 1 diabetes.

 

Stacey Simms  32:37

Kyle, before we wrap it up here, I know your funds for like an A die. Let me just throw a few rapid fire questions. Sorry, okay. All right. Has your Omni pod ever gone off on stage? Like, have you ever had an alarm or Dexcom alarm during a performance?

 

Kyle Banks  32:56

Oh, my God. Yeah. I mean, I, I've had my podcast on stage. So like standing there, and it's going off? And and I mean, what can I do? I try to do my best to try to avoid those moments. But I'm even one time is a funny Omnipod story, my Omni pod, expire it in my PBM was in my dressing room, so I didn't have time to run to get it. So I took the Omni pod off when it's still blaring and just put it in the trash, which was near the stage. But you know, far enough where it could be heard from the stage? Well, after about two scenes, I come off stage and I see all of this commotion stage managers and security for the theater of him around this trashcan trying to find out what's this loud, glaring noise? And is it dangerous? Like do we need to stop the show? And I'm like, No, I'm so sorry. But it's my part. I explained it all. And it turned into a funny moment. But it was not. It did security was not induced.

 

Stacey Simms  34:11

That's funny. Oh my goodness. Yeah, that can happen. For sure. I'm sure people are gonna ask me to ask you just you know, you've talked about how you kind of learned to figure your blood sugar to figure out your eating and you figured out, you've been able to figure out what works for you on stage. And I'm curious if you had any advice for kids who are doing school plays or adults who are performers?

 

Kyle Banks  34:33

Well, they, you know, the thing that really helped me out, honestly, was really learning how to incorporate the technology into my care, and leaning heavily on my CGM, and all of the information that it was delivering to me and which allowed me in turn to respond to what my glucose was doing or any fluctuations that I was having. you're experiencing, it really just helped me to not not having to finger prick and wait for that information, which is limited because it doesn't let you know doesn't inform you if your glucose is rising or falling. So just having that information just made a world of difference, and allow me to really just care for myself when I was performing. And it also allowed me to focus on what I was doing, as opposed to just being so concerned with my glucose.

 

Stacey Simms  35:31

Before let you go, how can we help Kyler cares? What do you need from us?

 

Kyle Banks  35:36

Unfortunately, because of COVID, a, we've had a really difficult time with fundraising, all of the fun ways in which we would go about raising funds have sort of been snatched from us, we did a fundraiser called from Broadway with where I incorporated a concert of love songs performed by artists that are currently on Broadway, from shows like Book of Mormon and Hamilton Lion King, of course. So during the shutdown, we produced that and presented it virtually, we were going to present the live version of that in New Orleans at the singer theatre, which is a theater that houses most of the Broadway shows that visit the city. But unfortunately, New Orleans is like one of the hotspots for this fourth, this fourth way the pandemic, so a children's hospital and other health care facilities that were parking within the cities. And neither did we felt comfortable with a live gathering of 2800 people with all that's going on. So, um, we're just trying to figure out, you know, the best ways to raise funds and how to continue connecting with our community, because it COVID is making it really difficult to gather. And it's something that that's something that's really important, as it relates to sharing this information with one another, helping with donations would be great. Also just more people of color, just sharing their stories as well. We find that the more visible we are, the more people can see themselves, the more it helps with feeling that you're part of and helps with confidence building and the reduction of stigmas and just knowing that you're not alone, so it's a two ways people can really help.

 

Stacey Simms  37:39

Well, Kyle, thank you so much for coming on for sharing your story. I hope this the break, I'm gonna call it from performing isn't the end of your performing. So

 

Kyle Banks  37:55

not at all. Well keep us posted. I most definitely will. I'll let you know. And I'm looking forward to you know, again, producing one of the things you know, feeding my artistic muscle is really excited about producing the shows from Broadway with love. And I hope I can get back to that because the first one was a lot of fun. So if people haven't seen it, you can go to our YouTube channel and check it out. But yeah, I want to get back into that when things when COVID allows us to do so. Excellent. We look forward to it.

 

Stacey Simms  38:30

Thanks so much for joining me.

 

Announcer  38:36

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  38:42

A lot more information on Kyle on Kyler cares. You can find it all at Diabetes connections.com. At the episode homepage, there's a transcription there as well as there is for every episode, I was so excited to talk to Kyle. Some of you may know I'm just such a real Broadway fan. I love musicals. I highly recommend Schmigadoon on Apple TV, if you haven't watched that yet. It's very entertaining and fun. I had actually talked about starting a Broadway type podcast during COVID. I still may do that I have in the back of my head how I want to do it, but it's gonna be so much work the way I want to do it. So we'll see maybe next year. I don't know. I'll keep that in my back pocket for a while. A

lright, Big thanks to Kyle for coming on. And coming up. I'm going to talk a little bit about back to school what it looks like in my house this year. And also some feedback about our last episode. Benn's big trip to Israel, but first Diabetes Connections is brought to you by Dexcom. And you know, I do get a lot of questions about Dexcom coverage for people on Medicare. And why not? It's not like you stop needing a CGM, the minute you turn 65 The good news is that the Dexcom g six continuous glucose monitoring system is covered for Medicare for patients who meet the coverage criteria. If you have type one or type two diabetes and intensively managed Insulin, you may be covered. To find out more about what that means. And if you qualify, go to Dexcom.com/G6-Medicare, I will link that up this episode, don't worry about writing it down, you're gonna want to talk to your doctor and you may even be able to get your Dexcom supplies at the pharmacy saving time and money. Learn more. Here's the link but it's over at the homepage dexcom.com.com/G6-Medicare.

 

Alright, I was very worried, as you know about the episode with Benny, because as you heard if you heard, he was far from perfect when he went by himself to Israel, which I didn't expect it and expected to be perfect. But you know, I see a lot of parents who post on Facebook and want their kids to stay under six for their agencies and never go above 130 on the Dexcom. And you know, we don't live like that at all. I wanted Benny to be honest and open and boy was he ever. It was interesting to hear him talk about what it was like and talk about diabetes camp and you know, gosh, I'm so thankful knock on wood wherever I can knock here, you know, he's a confident happy kid. He's got strong opinions, and I really feel like he's gonna be okay, right after a trip like that. So the feedback I got was just fun. A lot of people reached out with their own stories.

Corinna wrote, thank you so much to both of you for sharing this experience. It's so valuable to see how a parent can continue to support their son or daughter in an age appropriate manner. Lee wrote, I love that he's so transparent and genuine. I'm betting on Benny, several emails and direct messages saying thank you for being honest, it's really nice to know that we don't have to be perfect balancing independence and could quote diabetes, health and numbers can be difficult. A lot of acknowledgment about that.

But my favorite came from Joan, who emailed me and said, This reminded me of my 16 year old adventure on a cross country bus tour. We were still using urine testing. This is 1974. No CGM is no pumps, no cell phones or texting. I have a similar well adjusted attitude as your son which has served me well through my 50 plus years. With T1D. What I learned from this podcast was what a challenge it must have been for my parents, I have traveled the world had my share of health issues, enjoyed my life. And I'm not eating celery crying in the corner. Thanks for sharing this story.

Joan, thank you for sharing that email. And the funniest thing about it, I read it to Benny, he did not know what your urine testing was, he had no idea that finger sticks weren't a thing at some point in in pretty recent history. 1974. So you know, I got to talk to him and explain it's so funny. And he was diagnosed so little. And he's not a diabetes podcast or a researcher. And I see what he doesn't know. It's so interesting. So Joan, thank you so much for that. If I get any interesting stories or funny emails, I'll definitely share them as we go forward.

But I want to just quickly bring up back to school, which is still looking so difficult in so many places across the country. And I wish you all well, especially those of you with younger children. Oh my goodness. So I've got to going back to school, my daughter is a junior in college, she is back. And my husband drove with her all the way to New Orleans or she goes to school because she's got a car this year. Thanks for giving me something else to worry about. Yay. But she's doing great. And Benny is a junior in high school, and he's driving to school, our school will start the day after this episode goes live. We're in the south. So they go to school before Labor Day growing up. I always went back to school right after Labor Day, but he's driving to school this year. I don't know when I'm going to see him. He's so busy. And right now, his school does have a mask order with a very large public school system in North Carolina. And he's vaccinated. I assume that we'll get the booster shots as they roll those out. But it's going to be interesting to me. I mean, he goes to an enormous High School. It is I want to say there are 650 kids in his class in his grade. So it's a very big school. It's a crowded school. So we'll see how this works out. He expects to be back virtually in school very soon. I don't know.

But I will share that I realized just today. I have to get all his diabetes stuff back and bring it to the nurse. And I know you're thinking well, Stacy, you've done this every year since he was in preschool. How could you forget? We know with COVID we haven't even been in the school. I went back. I don't even know when last year a couple months ago could have been last week. I have no sense of time anymore. I went back and got all the stuff that we left there from 2019 2019 2020 that school year, and I haven't been back to see the nurse since so we're getting the school form signed. I got to put his stuff together and make a new kit. I um, so we'll be doing that. And then you know, he's you know, Benny, he's super casual. He'll take his backpack everywhere. So he'll have supplies, but I like to have stuff at the nurse's office for him. As well, and hopefully it's the same nurse, because man, she was great. And she totally got that he's super casual and just wants her to be there when he needs her and doesn't need her checking on him. And, you know, really terrific person. There are, at least at the time when he was a freshman, there were 21 kids at that school was type one. And I'm going to assume there are more, because I don't know about your town. But we're having more and more cases here. And it's not anecdotally I just talked to the end of the other day, and he said they have many more. And we'll we'll talk about that in a future episode. You know, many people think COVID is sparking more cases of all types of diabetes.

Before I let you go, take a moment to check out our YouTube channel. We are getting a lot of engagement there. I've got the in the news episodes over there. So if you don't know that we have a YouTube channel, it's just Diabetes Connections on YouTube. And all the episodes are there. If you prefer to listen to podcasts on YouTube, which many do they're most of them are not video podcasts. It's just audio, but a lot of people like that platform. Also the newscasts, though, are video so if you want to see me play an anchor lady, you can head on over there and I'll link that up in the episode as well please subscribe if you head over there you know very simple just click Subscribe on the on the YouTube channel.

Thank you as always to my editor John Buckenas from audio editing solutions. Thank you so much as you listen next week, we are likely going to air the Afrezza interview that I did over the summer. Still working on a few things but it looks like that one is going to come through for next week very excited to get an update from them. They've been around for a while. But man are they making a push ahead as they have more studies, more studies with children coming up and lots of interesting stuff, Afrezza and of course the newscast Wednesdays at 430 Eastern Time live on Facebook.

I'm Stacey Simms. I'll see you back here in just a couple of days until then be kind to yourself. Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Jul 12, 2021

The Baby-Sitters Club comes to Netflix! The beloved series features a character who lives with type 1 diabetes. How did the show do portraying life for a 7th grader with T1D? We talk to New York Times Bestselling author and winner of the National Book Award Robin Benway. Robin loved the books as a child and was diagnosed with type 1 as an adult.

Also this week, Mike Suarez turned his son’s story into an adorable picture book called Year One with Type One

Join the Diabetes Connections Facebook Group!

In Tell Me Something Good – she had a huge goal for the JDRF rides this year – of course so much had to be cancelled this year but her story took a wonderful turn.. on and off the bike.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's new book: The World's Worst Diabetes Mom!

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Episode transcription:

Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first pre mixed autoinjector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

Announcer 0:22
This is Diabetes Connections with Stacey Simms.

Stacey Simms 0:28
This week, it's all about books and a TV show that's based on books. We're talking about the Baby-Sitters Club with a New York Times bestselling author who loved the series as a child and was diagnosed with type one as an adult.

Robin Benway 0:43
Oh my gosh, I'm now something that I was a fan of for so long. I can now watch on television. You know, I was thinking about Stacey when I did start to watch it. I thought it was nearly perfect.

Stacey Simms 0:54
Robin Benway is the winner of the National Book Award when we talk about Stacey and the babies sitters club, what we liked what we didn't, and about diabetes in media. Plus a dad turns his toddler story into an adorable picture book about type one.
in Tell me something good. She had a huge goal for the JDRF rides this year, of course, so much had to be cancelled and changed. But this woman's story took a wonderful turn on and off the bike. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I'm so glad to have you along. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, gosh, ages ago now he was almost two and in December it will be 14 years. Yeah, he's 15 and a half 15. And more than that, I don't even know anymore. My husband lives with type two diabetes. I do not have diabetes, but I have a background in broadcasting and that is how you get the podcast which we've been doing now. for more than five years,
and I have been wanting to talk about the Baby-Sitters Club for a long time, I mean, we have talked about it because many guests over the years have said that it was very influential to them, either. They read it and really were touched by Stacey's story, the character who lives with type one, or somebody else read it and diagnose them because of it. That happened at least once to one of my guests. It's really incredible to think about these books, and the impact they've had on our community. So when I saw column in Elle magazine recently, about the Netflix adaptation, I really wanted to talk to Robin Benway, the author, I knew she'd be fun to talk to just by her writing voice in the magazine, and she really was and Robin also had some unique insight about the books and about the adaptation, and I was really excited to talk to her. We also talked about diabetes in other media, you know, I think a lot of us cringe when we know there's going to be a depiction of diabetes and a show or they mentioned insulin and we Oh, we know what's coming. So it was fun to talk to Robin about that. And to kind of spotlight some good stuff that's actually out there.
All right, I'm going to talk about my reaction in more depth to Baby-Sitters Club in a little bit of a review, but I'm going to do that later on. Because this is a longer episode. We've got two interviews, we've got Robin. And I also spoke to a dad who wrote a picture book rhyming kids book for about his little boy, and it's called year one with type one, and that is with Mike Suarez. So that's coming up in just a bit but first, diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop was really impressed at how much they get diabetes. It makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required there. Beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to Diabetes, Connections comm and click on the One Drop logo.
My guest this week is a National Book Award winner and a New York Times best selling author. She wrote a column about the Baby-Sitters Club and her reaction to it in Elle magazine. That's what caught my eye. I reached out and said, Would you talk to us but to come on the show? She said sure. And we had a great conversation. Now she grew up with a father who lived with Type One Diabetes, but she herself was not diagnosed until she was an adult. So her perspective on the Baby-Sitters Club, which she loved, as you'll hear as a kid was very different because she wasn't relating to the type one aspect about it right away. I'm also curious to know what you thought of the Baby-Sitters Club. I'm going to be putting more about this in the Facebook group. We've talked about it a little bit, but we'll put more posts in there and get your take. And as I said earlier, I'm going to put a little bit more of my review, although you'll you'll hear much of it in the interview. But a little bit more later on. Here is my talk with Robin Benway.
Robin, thank you so much for jumping on to talk about this. I really appreciate it. It's I'm looking forward to talking with you. Yeah, same here. Thank you so much for having me. All right before we jump into the Baby-Sitters Club, and I have a lot to talk about with that. Let me ask you just the basics. You were diagnosed as a young adult, right you were in your in your mid 20s?

Robin Benway 5:28
Yes, I was 26 it was July of 2003. I was diagnosed I was diagnosed with celiac disease at the same time I was having really low iron problems I was having anemia so they started doing a lot of bloodwork just to find out what was going on and started noticing that I had elevated blood sugar levels. And my father, who was my biological father was also a type one diabetic. So once they saw those blood sugar levels being elevated, they started to put things together pretty quickly. And so I in a, you know, a very strange way felt very lucky that I was diagnosed that way that it didn't progress to the point where I had to be hospitalized or my blood sugar's were, you know, four or five 600 or something like that, that I was diagnosed sort of accidentally and was able to catch it pretty early and could start, you know, meeting with an endocrinologist and started taking insulin pretty soon after that. So there was no mistaking at that age, oh, maybe it's type two, maybe it's something else because of your father, they pretty much went right there. At first, they were like, maybe it's type two. There was a lot of I think, you know, this was 17 years ago. So I think now, the way that people are diagnosing type one and people in their 20s and 30s is very different than it was 17 years ago. I think that was when people were just starting to see that, at least based on my experience and the responses that I was getting from doctors at the time. You know, I had grown up knowing that my dad was diabetic, but in our family, we had always sort of been under the impression that once you hit 12 or 13 years old, you're sort of out of the woods of that, you know, I think a lot of they used to call juvenile demise you know, because they were diagnosis of young. So I think it was a real shock because I had always thought, okay, I'm out of the woods. I'm fine. And that wasn't the case. But they definitely did think it was type two. They started me on oral medications at first Metformin, but nothing worked. And I remember I still remember the first time I took insulin, it was just like, oh, that was the problem. You know, that's what I need because my blood sugar's just came down to right where they should be. So, you know, it was a little disheartening knowing that I was going to have to go on insulin, but at the same time, that relief of knowing that now here's the drug that works was it balanced it out?

Stacey Simms 7:36
Do you remember I've been told this by other adults that I've talked to that what that first dose of insulin feels like, Do you remember that?

Robin Benway 7:44
I do. Remember, I was staying at my mom's house. I was living alone at the time and I thought I don't want to be alone when I take my first dose of insulin just in case. And I remember it dropped. My blood sugar's a little lower. They were like maybe in the mid 60s, and I just remember, I didn't feel shaky but I just remember feeling less. It's that feeling of a sugar rush basically, you know when your blood sugars are high I for me personally, I definitely feel a little agitated, a little edgy, you know a little bit more, I don't know Piper's the word but just a little fuzzier. And I just remember that feeling going away. And I remember also being so terrified of like having to give myself an injection like having to give myself a shot. And I was incredibly amazed at how easy it was and how painless it was. I had always imagined that it would just be a torturous experience, you know, mostly because your experience with injections is like vaccinations or inoculations. You know, it's Earth flu shot. It's a very different experience. Give yourself a shot of insulin. And I remember feeling that relief also of Oh, I can do this. Okay, this is something that I can do. Wow. Yeah. So

Stacey Simms 8:50
the article that I'd mentioned, you start out by talking about this high spot in your career, the National Book Awards Gala and then the reality of being an adult with type one, which is go to the bathroom, I get up your formal gown, you know, giving an injection. And, you know, certainly a great way to start the article. But I'm curious, do you share your diabetes experiences with your friends and family? I mean, not everybody has to be giving themselves injections at the table. Right? I know. I'm sure you're not hiding things. I don't mean to imply that. Oh, as a mom, that was the first thing I thought of was, oh, my goodness in the bathroom. She okay. Yeah.

Robin Benway 9:29
You know, I obviously all of my friends and family know about it. I'm not someone who would ever conceal that part of me. It's not something that I ever feel ashamed of, or feel like I need to keep secret. That's certainly not it at all. I think. For me, it's more about I'm very conscientious of other people's reactions to blood and to syringes or needles, and I just don't want to ever make someone I definitely have known people and I've heard of people who just give themselves an injection right at the table, you know, or will check their blood sugar under the table. And for me, I'm just not comfortable. That just in terms of making other people uncomfortable, but also sometimes things go wrong, you know, like, sometimes, you know, there's a little bit more blood than you thought there would be or you hit a blood vessel when you're injecting yourself with insulin. And, you know, sometimes it's just easier to be in, even if it's a public restroom, you know, it's still a confined space. And sometimes just the privacy is sorted out is something that I prefer but in terms of being open, I definitely I talk about it. I do a lot of school visits with my job, you know, writing for young adults and young people, I do a lot of school visits. And I always talk about how I was diagnosed and how that changed the trajectory of my life. And I always say to kids, who here knows somebody with diabetes, and almost every kid raises their hand you know, whether it's type one or type two, it doesn't really matter to me, I just, I know that they can make a connection with what I'm saying and relate it to either themselves or someone that they love in their lives. No doubt.

Stacey Simms 10:53
Yeah, I think that's to is the difference between my my personal experience of type 1 diabetes is my 15 year old who has made a career out Have trying to gross out his friends. Yeah, no, since the third grade watch this. Yeah, slightly different experience than a grown woman in

Robin Benway 11:09
that dress. You know? It's expensive. You just really don't want to get anything on this.

Stacey Simms 11:15
So let's talk about the Baby-Sitters Club. Now I'm a little bit older so my guilty reading pleasure as a kid was worse sweet Valley High then Babysitter's Club, also say, okay, okay. But were you a fan of this as a kid, this was something that you read and you look forward to.

Robin Benway 11:32
Oh, I cannot even describe to you like how much I love the Baby-Sitters Club. Like, I can just remember going to my local bookstore, you know, the Walden books that was in the mall at the time when there were still Walden books in malls and scanning the shelf and just looking for the new one and either being so excited when there was a new one or so disappointed when, you know, they came out every month and you know, on day 30 I'd be like, Where's the next one you know, and sharing with your friends or your Got the new super special, so then they would loan it to you and super specials were bad. But yes, I mean, just when I think about the Baby-Sitters Club, because I've also talked a lot about, you know, what is sort of my formative reading now as a writer, like, what did I read as a child and a young adult that sort of made me a writer? I think the two things about the Baby-Sitters Club is that they were so funny. And I think I learned how to write humor and really good dialogue from those books. I think you can't really teach how to write humor or write something funny, but I think if you can see it, you can see how either rapid fire dialogue or really smart responses or interrupting each other like, that was formative for me as a writer was seeing how they did that. And then also just as like a 11 1213 year old girl, you know, that is where, and I'm sure a lot of women and girls have had this experience, your friendships just kind of implode. And nobody really knows why. But suddenly, your best friend in sixth grade is your biggest enemy in seventh grade. And the factions are changing all the time and who's friends with who and who's not friends with who and who Did what to whom it's traumatic, it's a really difficult experience. It's a big part of growing up, but it's still difficult. And the thing with the Baby-Sitters Club was that at the end of the book, they were always friends. So you could see the sort of regeneration of friendship again and again and again. And for me, it was very comforting. You know, when sort of my female friendships were in turmoil, it was so lovely to see these girls work through things and stay friends in the end. So those were, I think the two things that kept me coming back to the book, but a great way to look at it.

Stacey Simms 13:29
Yeah, but you as a reader, your type one experience was with your dad. So I imagined Stacey McGill, the character in the book who has type one wasn't somebody who could really relate to that wasn't what you were reading the books at the

Robin Benway 13:42
time? Absolutely not. Absolutely not. You know, I actually I shied away from Stacey as a reader. You know, I loved I moved to New York when I was 18 years old. I've always wanted to live in New York. So reading her as a 12 year old I was like, Oh, that's she's a sophisticated city girl. You know, that's how they always portrayed her. She's From New York City, but that was my favorite part of her but there were books where either she was just diagnosed or I think there's a book later in the series where she was hospitalized. And I had a hard time reading those just because at the time my dad's health he had been a diabetic for 30 years at that point, so his health had gone up and down, you know, just the nature of the disease and the nature of treatment at the time as well. It wasn't as advanced as what we have now. So you know, it was scary to see my dad go through that and I, Baby-Sitters Club was my safe place. You know, that was my fun, safe, circular path of Stony Brook Connecticut. I didn't want a hospital or an insulin shot coming into it. So I don't say I didn't like Stacey as a character. I love Stacey as a character but in terms of what she went through, I just I really shied away from that. That wasn't I was much more a Claudia dawn girl. So yeah.

Stacey Simms 14:54
How did you approach the Netflix series you've lived with type one now for a while. We all know that they never get it right in In media, I really looked looked at the show. I look very much forward with a lot of trepidation. I was almost afraid to watch it. What was your reaction?

Robin Benway 15:09
I mean, I literally had an alert set on Netflix to remind me that the Baby-Sitters Club will be on Friday, July 3, and then I got the notification. I was so excited for it just because I had loved the books. And you know, I don't know any of the creators personally, but I was familiar with their work and their backgrounds. And I had read a lot of articles by that point about how they had approached the material and I just had a really good feeling about it. You know, I just thought that this is possibly in really good hands. And honestly, I wasn't even thinking about it in terms of Stacey and diabetes. I was thinking about it as oh my gosh, I'm now something that I was a fan of for so long. I can now watch on television. You know, I was even thinking about Stacey, so when I did start to watch it. I mean, I thought it was nearly perfect. I thought that they kept the spirit. I love that they kept the girls young, you do feel like you're watching 12 and 13 year old girls, b 12 and 13 year old girls, you know, and all of the struggles that go into that, but all of their I don't say immaturity, but just that feeling of they're still young, they're still figuring things out. They're not 17 years old in high school, you know, they're still little girls and I thought that was really important what the books were and to the show, and I just thought the way they modernized the material was perfect. You know, they talk about Claudius grandmother being in bands and our you know, Claudia is Japanese American and talk about her grandmother being advanced in our when she was young. And you know, at one point Marianne is babysitting for a kid who's transgender and that would have never been in the past 30 years ago, and I just thought they did a beautiful job of modernizing not only the characters, but the storylines while still staying true to what the spirit of the books was. They did

Stacey Simms 16:45
a nice job with that too. And they did this many times where they would put something in like that, you know, the child who was transgender, but the storyline wasn't so much about that child. It was the babysitter character's reaction to it and reflection of it. But I thought was going to throw this word up. I really thought it was masterfully done. Yes, she learned more about her. And yes, there was a there was a lesson there. And, you know, I know there's a lot of criticism from people who get uncomfortable with those kinds of issues, but I thought it was so well done. And they did it many, many times over. And my 18 year old who's really conscious of those things right now, I was really impressed. I thought it was really well done. But I was very worried about the truth about Stacey, I was like, Oh, no, because we see this happen so many times in media, and I think they got a couple of things that adults would notice kind of wrong. Boy, did they hit it out of the park, in terms of what younger people would see.

Robin Benway 17:41
What did you see in Stacey, what I see in myself. Here's a girl who has many, many things. But one of those things is diabetic. It is not the arc of her life is not the big picture of who she is. It's one thing and there's a scene where she goes to babysit and her blood sugar feels a little bit low and she pulls out a juice box and I realized that I had never seen that in media before. You know, I hadn't seen this girl or any girl or any woman just do that she feels better she keeps going. I mean, I have had literally hundreds of juice boxes on the road working, traveling, you know, so many so many juice boxes go down in bathroom stalls and downstairs bathrooms and you know, just you do what you have to do that's important. And then your blood sugar's come back up and you move on. And I was shocked to how blown away I was by that because it's such a simple act, but it is such a big part of managing your blood sugar and managing diabetes.

Stacey Simms 18:35
Yeah. Didn't you expect her not to do that and faint or have to go home from a babysitting job? That's that's what I think we all expected her to do. It was such a nice normal. No, I'm fine.

Robin Benway 18:45
Yeah. And I also I did like there is a scene I think at the end where it's sort of like a neighborhood meeting with all the parents of the kids that they watch and though the girls are explaining what it what this means for Stacey and how this works, and I liked that they introduced the doubt of the parents. Because I think that's, it's the pushback that you get like, are you okay? Can you handle this? You know, there's this feeling of, are you just gonna collapse at any moment? Are you safe and I like that they were like, this is how we this is how Stacey manages that this is how she handles it like these are factors in her daily life, but she's also smart enough and mature enough and knowledgeable enough to take care of herself. And I thought that that was a really good message as well to see that some people may not understand it. And here we are explaining to you what this is. Really, if we had had that exact discussion, not as a group of parents, because we aren't lucky enough to have a Baby-Sitters Club in my neighborhood.

Stacey Simms 19:37
One of our babysitter's when my children were younger, has type one. And when Lauren would come over we the first couple times we talked about, well, what would happen if you had a low blood sugar and what would happen if this happens, and we talked about all of that, and it was funny, I saw a few adults in the community commenting on the show, and they that would never happen. parents wouldn't talk about it that way. And then they also and I said yes, well, I'm sorry, but we did. Mother's overreaction, right? No mother would overreact like that. I was like, Hello, I mice my son's very first low blood sugar when it was a bad enough low sugar that we had to treat with more than just a juice box. We were about three weeks in, I called my endocrinologist convinced he was gonna send us to the ER, Mm hmm. Right? Okay, we treated it. His blood sugar's coming up. What do we do now? They were like, What do you mean? But I thought we were gonna go in for tests or something. So that kind of confusion really made me laugh, because in the show, she actually did wind up going to the hospital for the day. But in our experience, I mean, I did call I can't say that I didn't. So it was pretty funny to see our real life reflected in that way. I did also like the mom turn around by the end, but it was more as we mentioned earlier, it was more about Stacey and less about the other character. She turned it around.

Robin Benway 20:52
Well, going back to the mom, you know, I was diagnosed at 26 I know how much my mom still worries about me to this day like she would never Say that you're stupid ever say it explicitly. And I'm sure the way you worry about your children and your son, you know, there's just always going to be the worry. I think that's also very much based on who Stacey's mom and her parents were in the books as well. They were very anxious about her disease. And I think that was really important to see that, you know, Stacey is managing many different facets of this disease, including what is other people's reaction to it, including, what is her? What are her parents reactions to her? And it and I like that they were able to have that conversation and the confusion between this is who I am versus this is how you're making me feel. I mean, I think those are things that every young person feels even if they're not dealing with a chronic disease or not diabetic, how are you reacting to me versus how I want you to react to me, so I thought they did a really good job with that, but it's just tricky because every person you meet is going to react completely differently to your diagnosis and regardless of how you react to it. And so that's another thing that you're always navigating is, I mean, I'm sure your son has heard this. I'm sure every diabetic has heard this, but we Hear the Oh yeah, my uncle had it. He lost a leg or he now he's blind. You know, everybody write tragic stories and you have to sort of put up a barrier and remind yourself okay, well, that's not me that is your uncle or your dad or whoever. So I think that was for me as I bet seeing Stacey navigate the reactions of other people I thought was really important as well because that is a big part of it.

Stacey Simms 22:22
Robin Well, I have you and as you listen, Robin is a National Book Award winner New York Times bestselling author, six novels for young adults. I want to ask you, Robin, why is it so hard to write genuinely for young people?

Robin Benway 22:38
I think for me, you know, six books in now at this point is empathy. It's the very first thing that it has to be the biggest part of every book is empathy. I think it's very easy to like see young people today and be like you kids with your tic tac toe and your snip snap, you know, like they don't, you know, people it's very, very easy to look at what is this? What are we in now, generally See, I guess and look at them and think, well, in my day, we had this and not that we weren't on our phones all day. I mean, I'm on my phone all day. I'm a 43 year old woman. So I don't you know, I'm not gonna judge a 15 year old for being on their phone all day. But I think for me, the biggest thing is empathy, because nothing really changes, right? Like we're all still figuring out how to get along with our friends. Who do we want to be? How do we get along with our parents? How do we move through the world? You know, I as you get older, you hope you get wiser you hope you have more experience that makes you grow mentally, you hope that you maybe have a little bit more agency and a little bit more ability to vocalize how you feel and how to stand up for yourself but the struggles are still the same. You know, the way you get along with your teachers the kind of the same way we all get along with a boss or sometimes in a classroom, you have to be with people you don't really want to be with same as in an office space. You know, sometimes you have co workers. So I think the feelings are always the same. The technology doesn't matter. The place doesn't really matter for me. It's just The feelings whether it's love or family or friendships,

Stacey Simms 24:03
have you ever considered putting type one into one of your books? Yes,

Robin Benway 24:08
I have. I've definitely over the years, I've had conversations with different editors or people in publishing. And they've said, like, hey, you're diabetic, would you ever think about writing a book about diabetes? I think the thing is for me, and this is something that I've really, really, it's why I don't speak publicly about being a diabetic so much is that I don't want it to become the only thing that people think of when they think of me again, I'm not ashamed of it, I'm very open with it. But at the same time, you don't want to just become Oh, that's Robin, she's the diabetic, you know, we we are all more than just one thing. And so I know that if I do a book about being a diabetic or a character who has diabetes, I will have to talk about that book for years, you know, hopefully, you know, one to two years. You know, it will become the defining part of every interview that I do every, you know, work conversation that I have, and Worry sometimes that it will dilute down to just me being the diabetic when I like I said I am so many other things as are pretty much every other diabetic out there we are more than just that disease. And so I do think about it. Also for me fiction is such a wonderful escape. I don't write books because I have to I write because I love writing books, especially for young people. And I think that for me, I love that escapism of it. I love that I am not having to figure out a character's blood sugar situation. I'm already I've got enough doing that for myself. So I don't know I think about it. Maybe as the years go by, maybe in a few years, I'll engage it. There would have to be a really good idea. It wouldn't just be Oh, this character has been diagnosed with diabetes, there would have to be more at play for me so. So I think about it, never say never, but if someone else wants to do it, go for it.

Stacey Simms 25:52
You know, it's funny, I don't want to put too fine a point on it. But the first part of your answer there, which is you didn't want to be defined by Diabetes Connections. What Stacey's story is all about to Yes. And I think that's why we like it so much, because that's how almost everybody I know with any kind of diabetes feels. Yeah, right. Agreed. I think anybody with anything

Robin Benway 26:11
like that, you know, it's very easy, especially in sort of these wild modern times to focus on maybe what is unknown or scary or, you know, baby, if people don't understand it, that's what they kind of go to first. But that's just not how I view and that's not how I view being diabetic. It's just so it's just a thread that's woven into my life, you know, I, it will always be there. It's something I will always manage. But it's so inherent to me. I don't want someone just to pull that thread out and only look at that rather than the bigger picture.

Stacey Simms 26:41
Is there any depiction of type one in media that just makes you mad? Like, can you think of something where you're like, Oh, I hate that one. When people refer to that one,

Robin Benway 26:48
I can definitely think of one thing but I can't say

Robin Benway 26:52
but I it was fairly recent and yeah, it just I for me, it was sort of like that thing where you're just like, Are you serious? Like, is this really like, this is what you had to do, and this is what you did with it. And it just it was petty on my part. And, you know, mean, and I can't say it, but I got so frustrated and so annoyed. And, you know, I think that was a long simmering feeling that once I got to the depiction of Stacey, I think those two feelings just sort of combined and became an article which was I can't believe I just had to read this versus Oh, I can't believe I just saw this, you know, and that the negative and the positive of that sort of combined together, but yes,

Stacey Simms 27:32
definitely. And then Baby-Sitters Club has got to have a season two, you know, is there anything that you remember reading that you really liked them to see? And it doesn't have to be about Stacey, oh gosh,

Robin Benway 27:42
I really want to see Don's mom and Mary's dad get together. I know they were together in the first season but I if memory serves, they get married. So I really want to see that wedding. Just because I love Dawn's mom both in the book and on the show and I love the way that they've treated Maryam dad is fun. This is kind of sad, but in the opening scene. Louis, the Collie, you know, appears with Christie. It's Christie's dog Louie Who's that Collie dog. And I was like, Oh, no, Louis because I don't. If memory serves things get a little dicey. Oh, no.

Stacey Simms 28:11
Sorry. Spoiler

Robin Benway 28:13
alert. I really, I when I saw Louis, I was like, Louis, you know,

Stacey Simms 28:19
it is amazingly six with us from what we read in our childhood, right.

Robin Benway 28:24
Well, I was talking with a friend of mine about this. You don't realize how much you buried in your brain. You know, I'm watching the show. And I'm like, oh my god. It's Louis. Oh my gosh, it's more been a destiny. I forgot about a bit of destiny. And just Charlotte Johansen, Jamie Newton and his sister Lucy and I'm like, how do I remember all of this? And yet I'm like, did I pay that bill? See now I'm

Stacey Simms 28:45
jealous. I want it I like sweet Valley High. backer revel in those memories.

Robin Benway 28:52
I'm sure it's developing somewhere.

Stacey Simms 28:54
I kind of hope not really cheesy. Can I ask you are you working on anything new right now I know authors always hate that. I know just finished and Oh, that was great. But what's that?

Robin Benway 29:07
I always say it takes a brave person to ask a writer somebody working on because oh tread carefully. I am working on something. Yes, it has been a slow road. But the book has evolved many, many times. And I've sort of distilled down to what the book actually is. And I have started writing it. I feel really good about it. I started it a couple times, didn't feel good, went back to the drawing board ripped it all up again and started over. So I do feel good about it. Now it has taken me a long time to figure out what it's about. And I think at the same time, I was coming down off the success so far from the tree and the time that that took, which was wonderful, no complaints, but it was hard for me to both work on a new book and enjoy the success apart from the tree. So I am basically staying with family for a few months. I'm sort of quarantined away here and just everyday I sit down and write 1000 words and it's going well, it feels very, very good to be writing. Again, I haven't written for a while and I have missed it very much. That's fantastic. Well, I look forward to reading that. I'm so glad that I read the article. That was an L. Thank you so much for joining me to talk about this. It was a lot of fun. And I continue to learn more about the Baby-Sitters Club baby. Those books. Thanks so much for joining me. Thank you call me if you have any questions about the baby sitters.

Stacey Simms 30:17
You got it Robin.

Robin Benway 30:23
You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms 30:29
More information on Robin and her books on the episode homepage. I'm really appreciative that she jumped on with me and I definitely got to seek out her books now. It was funny to think about not just the Baby-Sitters Club books, which as I said, I was marginally familiar with as a kid I was a little too old. But the sweet Valley High books man, she made me want to see if my mother still has them. I bet she does. I guarantee you they do not hold up for where they are relic of their time. Right The 80s if you're familiar with sweet Valley High I know you know what I'm talking about. If you are not I will not suggest Due to any more of an explanation, all right, in just a moment, I will be talking to a different kind of book altogether a different kind of author, a dad who wrote a book about his son's diagnosis to help other kids and families.
But first Hey welcome to our newest sponsor Diabetes Connections is brought to you by Gvoke HypoPen you know, almost everybody who takes insulin has experienced a low blood sugar and that can be scary. have very low blood sugar is really scary. And that's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle and that means it is easy to use. How easy is it, you pull off the red cap, you push the yellow end under bare skin and you hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Jeeva glucagon comm slash risk

If you have a child diagnosed very young with Type One Diabetes, chances are you have a favorite book about diabetes that you read together. We were so lucky to have a couple of these Rufus comes home was one from JDRF. There was another one that I've mentioned before called Jackie's got game that we absolutely adored. There are a lot of wonderful books now for kids with type one. And this week, I am talking to one of the authors of these books. And that is Mike's for as he wrote year one with type one, four and featuring his son, Andrew, it's all about their diagnosis story and also a bit of a teaching tool. Here's my conversation with Mike.
Mike, thanks so much for joining me. It's great to talk to you.

Mike Suarez 32:43
Hi, Stacey. Thanks for having me on.

Stacey Simms 32:45
One of the things I loved doing when my son was diagnosed was finding books that we could read together. And you know, My son was tiny, he wasn't yet too. And so when you have a picture book like this, it's really a nice opportunity to go through it with the kids. So I just want to let you know that They really appreciate what you've done here. I think it's great.

Mike Suarez 33:02
Yeah, thanks for saying that. You know, it's kind of the same experience I had, you know, I went to Amazon when he first got diagnosed, and I was looking for books myself, and I found some pretty good ones out there. But I was, you know, really looking for one that really kind of resonated and something that I could share with my own family members and friends to really kind of drive home what it is that he goes through and what it's all about.

Stacey Simms 33:23
Well, it's been a couple of years now since Andrew was diagnosed, but why don't you take us through? Even though you're talking about it in the book, why don't you take us through his diagnosis story? Had you all had any experience with type one Had you ever given an injection before and this,

Mike Suarez 33:36
so I was unfamiliar entirely with Type One Diabetes. My wife was more aware of it because she had friends growing up and in college that had type one diabetes, and she was around people that have given themselves insulin injections. And for me, I was just totally unaware of this condition. I was totally aware of of the treatment for it. The only thing I knew of diabetes was unfortunately, just That joke that people like to tell around how if you eat too much candy, you get diabetes. And that's basically all I knew of diabetes, which obviously isn't true or isn't fair and especially isn't isn't true of type one diabetes. So I learned a ton, just in that that first few days in the hospital,

Stacey Simms 34:15
when did it occur to you that with everything else that's going on, it would be a good idea to write a book.

Mike Suarez 34:21
So it was probably a couple months shy of his first year with it. I don't know how the idea popped into my head. I was taking the train in and out of Boston every day for work. And I think just a few lines kind of popped into my head. So I took out my iPhone and just wrote him in my notes app. And I think part of it too, was that my wife and I were talking about bringing a book into school, to read to his classmates, know what it is that he has and goes through and know why it is that he has to leave and see the nurse and why it is he gets, you know, Skittles every once in a while and he's in class. And, you know, going through the books out there, you know, again, there were good ones, but I was just looking for the right one that told the story I wanted to tell his classmates in the way that I wanted to, you know, I've seen that a lot of the other books out there are actually self published. So I knew that the opportunity to do this was out there, you just had to kind of sit down and figure it out. So I utilize my train time in and out of Boston to kind of write and refine my lines and kind of do a little bit of research to figure out what the process was all about

Stacey Simms 35:26
was the idea for you to write it for kids to read or for parents to read. I mean, it's the kind of book right, it's in rhyme. But there's some concepts in there that are going to be above a four year olds head.

Mike Suarez 35:38
Right. I think what I wanted, most of all, well, I guess there were a few goals. There were a few readers I had in mind. One was the newly diagnosed I wanted for newly diagnosed children to be able to read this and be able to relate to Andrews story and be comforted to know that you're not alone in this that there's other people that have been through Through this and have dealt with it. So that was maybe my primary audience secondary to that would be kind of the friends and family of somebody who is newly diagnosed, including my own friends and family so that they can get an appreciation for what it is and kind of understand what it is that their, you know, diabetic friend or family member goes through. But I guess, you know, I was just thinking about when I read to my own kids, you know, a lot of time it's me reading to them, not them. I guess as they get older, it's more of them reading to themselves, but it's mostly me reading to them. So I can, you know, kind of pronounce the big words, but also the books that we tend to enjoy the most, or that I enjoy reading the most and they seem to be the most receptive to are the ones that rhyme. So I did want to have that kind of make it accessible for kids not make it kind of a chore to read. And that's something that I none of the other books that I saw did was was kind of right in verse so I wanted to have that aspect of it to be accessible. Similarly with the pictures and the drums I wanted them to be kind of, you know, light hearted in a way as much as it's a serious subject matter, but to make it accessible for kids to understand,

Stacey Simms 37:08
the book tells the story of you know, your family's journey, and then educating people about the basics of type 1 diabetes. But at the very end, your son has signed it and say, thank you. How did that piece come about?

Mike Suarez 37:23
One thing I haven't mentioned yet is I actually did this whole thing in secret, because I did it on my train rides, and nobody was watching me and then at night, I would, you know, once everybody wants it bad, I'd maybe work on it a little bit more. And this includes the whole process, finding the illustrations, kind of framing it for them, getting beta readers to help sharpen up the the rhyme and all that sort of thing. And I wanted this kind of personal touch because I wanted people to read it and realize that this wasn't a fictional character that this is a real boy. There was maybe the same day that I asked Andrew to write up a birthday card for a birthday party he was going to I just took out another piece of paper and just asked them to write on it. Thank you for reading love Andrew. And he asked me What's this for? And I just was like, I don't worry about it. Like I didn't really, I just asked him to do it. Then I put it all together. And then I when it was finally done, I got to read it to my family for the first time, you know, naturally they all loved it. But I think it was I read it first to my wife and son while my daughter was napping, because I didn't, I kind of wanted to, you know, have their full attention. But after she woke up, Andrew took the book, and he showed it to her. And he flipped immediately to that page that had his writing on it, and was like, so proud of having that contribution to the book. That was the first thing he showed his little sister. That's great.

Stacey Simms 38:41
There's a page of the book that, you know, has him coming home and has gifts and things with a lot of beams on tags. Are those friends and family names.

Mike Suarez 38:51
Yep, they were basically you know, the people that probably were the first to find out and you know, felt, you know, really bad and came to us with, with just some gifts for Andrew, including our next door neighbors and their kids, my sister and her husband and their kids, basically, you know, aunts, uncles, siblings, it just so happened that some of the names rhymed. So if you read them in order, even though the name tags kind of, you know, rhyme together, when I recognized that I was like, you know, I should put them all in there and kind of, you know, thank, you know, some of the people that were, you know, part of this journey and a part of kind of coping with all of this.

Stacey Simms 39:31
Yeah, I think it's really well done. The one thing I would say is, there's this little bit about no sneaking snacks. We count carbs to know what goes into my body, but no sneaking snacks. That's beyond being naughty. Yeah, I'm no psychologist, but I always felt like sneaking and and associating any bad behavior with diabetes was something that maybe it was something that we never did. Let's just write that way in my house. We always said you can't get in trouble for anything to do with diabetes, it just flies off the books. So that's the only thing that kind of made my eyebrows go up a little bit. But Gosh, Mike, I'm not really not a critic here. Sure, you know, and I think that's also a good illustration, no pun intended that we all parent in different ways. Yeah. Right. I mean, there's no one size fits all you got to put insulin in, you got to know where your blood sugar is. Yeah. But you know, the way you parent is probably not exactly the way I parent and that's fine. Right. So that I was just curious. And you know, you showed it to your endo. I think that's, again, with my book, I did the same thing, right. You know, you're not a medical professional, but you're showing it to the medical professionals and hoping that they will flag anything that comes up. I'm also curious to know, your daughter makes a couple of appearances in the book, and she's one of those names that we mentioned. Who is she doing and how do you balance the son who gets all this attention for type one and trust me, I have the same situation in my family, right. I have an older daughter who doesn't have type one. How do you handle that with her? How is she doing?

Mike Suarez 41:00
Yeah, I mean, she's just as used to it by now as as Andrew, you know, Andrew was four and a half, she was one and a half. So she has no memory, you know, whereas Andrew may may recall, he's he's a, he's got a pretty good memory for a kid his age, he may recall a time before all of this, she would have absolutely no memory. So this is all she's ever kind of grown up to now. So whereas if they were teenagers, then maybe if she was used to just, you know, snacking whenever she wanted, she would continue to do that, despite Andrews diagnosis, but because we're able to kind of be careful around that about that stuff from the outset. If it's not time for Andrew to eat, then we're not going to let her eat in front of him. But if we're you know, giving Andrew you know, something to bring his blood sugar up, if it's maybe a pack of Smarties or something like that, and we only need to give them eight of the 10 then maybe we'll give her the other two, but it is interesting to see how she internalizes as she gets older, how she responds to it, somewhat funny side note around it She sees Andrew take shots all the time and she doesn't get them herself. And sometimes she sees Andrew get shots and she like, asks or she at least at least did this. earlier on, she would say, where's Maggie shot? Where's Maggie shot? And we would explain No, Maggie doesn't need a shot. So I think it was last year when we took her to get a flu shot. She was all about getting her flu shot right. After she got it, she asked for another one. And she was like crying because not because she got the shot, but because she only got one, which was kind of backwards from what you'd expect a kid raised to do. And then another kind of similar story is there was one day where she closed like a dresser draw on her finger and her fingernail started bleeding and you would expect a kid her age to just start wailing. She actually picked up her finger and she was like check my blood sugar. Check my blood sugar.

Mike Suarez 42:51
You also wrote a Christmas story. Yep. Why did that come about? Tell me that story?

Mike Suarez 42:59
Yeah, sure. So When you're one with type one first came out, yeah, I created a Facebook page to kind of go along with it to give updates about Andrew and to kind of, you know, create some fun memes and things like that to kind of draw attention to it. And I created a kind of a spin on Twas the Night Before Christmas. And every once in a while, like a new couple lines would occur to me even after Christmas, and I would kind of go back and edit the post. And then at some point, I was like, you know, there's probably enough here and there's probably enough opportunity for reuse from my first book that, you know, I wouldn't even be that many more new illustrations. I could just turn this into another book, relatively inexpensively and you know, certainly justify the cost that goes into it. And so I said, Yeah, why not? So I just kind of thought through it and just kind of threw it together and I was really happy with the way it came out.

Stacey Simms 43:50
So Mike, we celebrate Hanukkah. I'm not sure how well versed I am in this classic poem, right? But it seems to me that all of the reindeer have Dexcom on I'm not sure I remember that from the original Am I looking at this right? Do they all have Dexcom

Mike Suarez 44:07
everybody everybody basically everybody in the story that the Dexcom the reindeer have all all of Dexcom on the Elf on the Shelf has one Santa has one basically everybody in the book and that's what I wanted to create was kind of a world where you know what, it's okay that everybody in the story has it.

Stacey Simms 44:25
All right, so what's next? Well, there'll be another issue of this are you gonna move on to the elementary school ages Andrew, you know, with seven now so it's a little different than when he was little?

Mike Suarez 44:35
Yeah, it's a good question. I'd certainly like to do you know, to continue Andrews story. I haven't really started anything yet. But I've got a few ideas floating around. I mean, I think one of the things I realized is that there's actually more children's books that are picture books than there are kind of chapter books. That's obviously a whole different ballgame. Then picture books, but my mother in law's actually she's an author. As well, and she's written lots of novels. So if I do decide to go down that road, it'll probably be a lot more work than I did for these other ones. But I certainly would have, you know, a mentor throughout the process. If I did go down that route.

Stacey Simms 45:13
It'd be great to have more books with a protagonist who lives with type one. And it's not about type one, if I could put a request in. Yeah, no, it would be really nice. There's a few books and I'll, as you listen, I'll link some of them up in the show notes. But there are a few books Besides, you know, the Baby-Sitters Club that feature Stacey who lives with type one, but it's a little outdated at this point. And the lily books, there are some I hesitate to call them novels. They're like novelizations for middle schoolers and stuff like that. It'd be great. There's only a couple of books I can think of that have a protagonist who lives with type one, but the book is really not about the diabetes.

Mike Suarez 45:47
Right. So yeah,

Stacey Simms 45:48
that's, I'll put my vote in for that.

Mike Suarez 45:50
Yeah, certainly. I think that's a great idea.

Stacey Simms 45:53
Well, Mike, I really appreciate you coming on. These books are so fun. I have a lot of great memories of reading the book that we liked. When he was little Jackie's got game was our favorite. I don't even know if they're still printing that one. But that was the one we loved. So I hope that people find this and love it, you know, kind of just like we did that stories. Thanks for coming on and sharing your story. Sure,

Mike Suarez 46:13
yeah. Thanks so much for having me.

Stacey Simms 46:14
You can find out more about Mike's book, just go to Diabetes connections.com and click on the episode homepage. This is in the show notes. Every episode has show notes on whatever app you're listening to. If you listen to podcast apps, they will display a little bit differently. I think Spotify is finally letting people click through. In other words, if there's a link in the show notes, you can get there through Spotify, but you can always go to the homepage at Diabetes connections.com. if things aren't showing up in your player and find out more there, tell me something good is up next. And boy, there have been so many changes this year with COVID and the JDRF bike rides not an exception, but there's some really good news about one particular writer and I'm going to share that
but first diabetes Connections is brought to you by Dexcom. Do you know about Dexcom Clarity. It is their diabetes management software. For a long time, I just thought it was something our endo used, but you can use it on both the desktop or as an app on your phone. And it's an easy way to keep track of the big picture. I check it about once a week. It really helps me in many dial back and sees longer term trends and helps us not to overreact to what happened for just one day or even just one hour. The overlay reports help add context to Benny's glucose levels and patterns. And you can share the reports with your care team. We've done that all this year with the virtual appointments makes it so much easier and productive. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at Diabetes connections.com and click on the Dexcom logo
a couple of years ago I met a local woman here in the Charlotte North Carolina area who lives with type 1 diabetes. Dana Cumberworth first impression that she made me was that this might be one of the fittest people I would ever meet and come to find out she is really Just an athlete, just one of these people who is always always moving and pushing and thriving with type one she bikes she runs she weight trains. Dana was diagnosed as a student. She was a first year student at Wake Forest and their physician's assistant program. And how she was diagnosed is pretty incredible because they were doing the endocrinology part of the class. And when her lab partner tested Dana's blood sugar, it came back at 700. So she was diagnosed in the class while she was diagnosed at the doctor's office the next morning. Fast forward. She has since done I believe, three Iron Man races and then she started getting involved with jdrf. And the bike rides this year was two been a very big deal for Dana because this is her 10 year diaversary. It was just last week actually that she marks 10 years with type one, and she was going to do several if not all of the rides this year. Oh my goodness.
But of course plans changed. Everything went virtual. So she and her husband and friends planned ahead To the beach to the east coast here of Charlotte, North Carolina, and do their own version of the ride there. This was supposed to happen this past week. But if you've been following the weather and the hurricane trackers, then you probably know that hurricane eecs was a big problem here in North Carolina. So instead of being able to complete this at the beach, in fact, with the way the podcasting time shifts here, she will have completed 100 miles in Charlotte with some friends and family. So that is absolutely amazing. She set a new goal she keeps surpassing her monetary goals. So her new goal set just a couple of days before that ride is $20,200 because as she said in one of the videos she makes 2020 has already been unbelievable. So why not push that goal? That way? She's not that far off. So 2020 $20,200 and oh, I have forgotten to mention that Dana and her husband announced a couple of weeks ago that she is pregnant, I believe at this point. She's about 1819 weeks along. Hi, I'm going to put some of her videos in the Facebook group because she's been talking about her journey this whole year. And I just think her story is amazing. I will link up some of the videos that she's been doing into the Facebook group at Diabetes Connections, the group, but yeah, hundred miles, type 1 diabetes pregnant. And when you look at her smile, it just looks like it's a piece of cake. She's so inspirational to me, especially to push on with everything that's happened this year and how this ride keeps getting changed and changed and changed. So congratulations, Dana. Continued Good luck and good health to you and your family. And we will cheer you on.
If you have something good going on. It doesn't have to be 100 miles of biking while you're pregnant. It can be you know, a diaversary milestone that makes you and your family happy or something that you really want to shout to the hills. Let me know you can email me Stacey at Diabetes Connections comm or post in the Facebook group Just tell me something good

At the top of the show, I said I was going to talk a little bit more about the Baby-Sitters Club, the TV show on Netflix. And I think that Robin and I covered it pretty well. But I just wanted to say a couple of more quick things about the actual depiction that I realized we didn't touch on in the interview. If you haven't seen it, or you've had I'm curious what you think the feedback I heard from my friends who have kids with type one who watched it was that I don't know anybody who didn't like it universally, very well received by their kids. They loved seeing a beautiful young woman who was accepting of her condition who told her mom, you know, I'm going to do it this way. Who asked for a fancy purse, she didn't get the fancy purse. But you know, she did this for that Gucci bag. And you know, other things like that, which made it seem very normal. You know, she was low during babysitting, she drank the juice box and went on her way. It didn't seem insurmountable and her friends, the kids, I don't think Robin and I talked about this. The other babysitters in the club, when they found out said Why does somebody with diabetes or you can still do such And so with that, right? Okay, no problem and they really just moved along. Like most kids do, it's the adults that have more of a problem,
the things I didn't like about it, they still got stuff wrong, which amazed me because I know that they had to be consulted with people who have type one for this, or at least I hope they did. But what they got wrong was the seizure. Did you see that she had a seizure before she was diagnosed, and they talked about it like she went into insulin shock. Now, I am not a medical expert. Perhaps that could happen. But it makes no sense to me that somebody who is not yet diagnosed with type one, so they are not taking any insulin could go into an insulin shock that would make them have a seizure. Right. It just seemed kind of a stretch. They wanted to do something that would make Stacey embarrassed to push the reason why they moved. It was just this whole I don't know to me that was a big turn off, but it was quick, and I get it it move the plot along.
The other thing was this weirdness where that one low blood sugar, which Stacey treated herself causes her mother to take her in for a day of tests. Now, having been a very Worried Mother, I'm still one, let's face it. But when I called my endocrinologist every single day of the first month that Ben he had type one, which I really did do, they never told me bring him in for tests because he had a low blood sugar. Right? I could see a parent calling. I could see a parent being alarmed. I couldn't see an endocrinologist going along with that. And given Stacey was talking about how she was in the hospital for a whole day taking tests. So that was also a little weird. Is it nitpicky? Yeah. But if you're going to tackle something like type one, it's really not that hard to get it right. So I hope they continue to follow Stacey and show her confidence and show we're doing lots of other things that have nothing to do with diabetes. There's definitely gonna be a season two of this show. It's a huge hit. That means there's a lot of room to get it right. So I stay optimistic. What did you think I'm really curious to hear what other people have to say about this as more people discover the series
before I let you go, I have something to ask of you and it is about podcast reviews. If you are still listening, I know you were a big fan. I would really appreciate it. If you haven't moment to go to whatever podcast player you're listening on and leave a review. Maybe you're listening on the website or through social media, but especially if you're on Apple podcasts, I'd really appreciate a review there. If you're not, you can head over to Apple podcasts easily find Diabetes Connections and hit subscribe. It's free to subscribe. no cost. It is free on any podcast player and we are everywhere you can get audio Spotify, Pandora, Apple, Google Android, if you're not sure, go to the website, Diabetes connections.com. Scroll down, and you will see 15 links of places to subscribe to the podcast. And you just you can pick one, chances are good, the app is already on your phone and subscribe for free and leave review. I'd really appreciate it. All right, thank you to my editor john Kenneth audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

Benny 55:01
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Transcribed by https://otter.ai

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Jun 29, 2021

Dexcom is going big in their new campaign to get us talking more about Time in Range. This week you'll hear from their most famous spokesperson, Nick Jonas.

The singer and actor was diagnosed with type 1 diabetes at age 13, back in 2005. In this recorded webinar, he answers questions about the new campaign and shares some behind the scenes info about his own journey with diabetes.

As Stacey says in the episode, for this event, media was invited to send in questions. The organizers selected the questions and they were asked by Melissa Katz, who is credited as host and representative of The Global Movement for Time in Range.

The Global Movement for Time in Range is a global consortium of diabetes community thought leaders working together to improve the understanding and accelerate the adoption of time in range as the standard of care in diabetes management. With the support of Nick Jonas, Beyond Type 1, Children with Diabetes, College Diabetes Network, Dexcom, JDRF International and Taking Control of Your Diabetes, the group will jointly address issues to improve the lives of people with diabetes. To learn more about the movement and how to get involved, visit WhenInRange.com.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

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Episode transcription below: 

 

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week, a new effort to get us talking more about time in range. Dexcom is launching this campaign with their most famous spokesperson, Nick Jonas,

 

Nick Jonas  0:35

I would say A1C is a useful piece of data. But as I mentioned before, we're talking about a collection of numbers and you receive that data after a certain period of time, our world and specifically my world on so many people out there moves at such a rapid pace that the more information we can have at the fingertips, no pun intended is really incredible thing.

 

Stacey Simms  0:56

Jonas answers questions about the time in range campaign and shared some behind the scenes info about his own journey with diabetes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show and oh so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. If you are new, my son was diagnosed way back in 2006. Right before he turned two, he is now 16 and a half. My husband lives with type two diabetes. I don't have diabetes, but I have a background in broadcasting and that is how you get the podcast.

I doubt he needs this introduction. But singer and actor Nick Jonas was diagnosed with type one at age 13 in 2005. He very famously partnered up with Dexcom in their first Superbowl ad earlier this year, and now he's part of that company's effort to educate about time in range from the news release they sent over Dexcom along with beyond type one and organization Nick Jonas co founded children with diabetes, the college diabetes network JDRF International and taking control of your diabetes has announced the global movement for time in range and awareness and education campaign to improve the understanding and accelerate the adoption of time and range as the standard care in diabetes management.

For this event, we were invited to send in questions ahead of time, the organizers selected the questions then they were asked by Melissa Katz, who is credited as host and representative of the global movement for time in range. I sent in three questions. I'll come back after and tell you more about that. And I'll share the one that they didn't use. I will tell you right off the bat. Everybody I know in the diabetes media on that call sent in a question about Nick using his platform to push for insulin affordability and access.

quick housekeeping note. Yes, Dexcom is a sponsor of the show, but they don't tell me what to say. longtime listeners are familiar with this. All my disclosures are on the website, Diabetes connections.com. But it's always worth the reminder. And you should know I edited out the very beginning of the session, they played a video about time and range. I'll link that up in the show notes as well. And I edited out the very end where they talked about details for media about getting the audio and some other notes. Other than that it is the full unedited q&a, and we'll hear it in just a moment.

But first Diabetes Connections is brought to you by Daario. Health. Over the years I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on my son on Benny, the Daario diabetes success plan is all about you all the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for how to succeed, get the diabetes management plan that works with you and for you. Daria is published Studies demonstrate high impact clinical results, find out more go to my daario.com forward slash diabetes dash connections.

 

Melissa Katz  3:59

So our guest of honor here needs no introduction, especially in his own diabetes community. So please welcome diabetes Rockstar Nick Jonas.

 

Nick Jonas  4:07

Hello, diabetes Rockstar. That's my official title. Hello, everyone. I'm calling in from Cleveland, Ohio at the moment. So I appreciate your being on excited to talk to you about this global movement for time and range. It's obviously very important to me as a person living with type 1 diabetes since 2005. Now, I guess and I'm excited to be launching this movement for time range alongside Dexcom my partners and leading diabetes nonprofits, including one that I co founded, which was part of that video beyond type one, our goal is to make people aware of time and range and its benefits. And also just you know, I think so many people either live or know someone that lives with diabetes that are just not aware of this and to be able to kind of put this in the forefront and start a conversation around it. And it's an amazing thing for me as a diabetes ambassador and advocate, thrilled to be able to talk to you today and walk you through it all.

 

Melissa Katz  4:58

Fantastic. So let's get right to it, as you know, the diabetes media submitted questions in advance, so they're on line waiting for those answers. And we're going to start with Matthew Garza from diatomic. He asked, who introduced the concept of timing range to you.

 

Nick Jonas  5:14

But like all things with my life with diabetes, I rely on my doctor or everything, wonderful doctor, out of UCLA in Los Angeles and endocrinologist there. And we've had a candid conversations. And I think that the thing that really stood out to me was just talking to the benefits. And you know, we talked about in that video, high blood sugars are not ideal and have an effect on day to day life, diabetes, and obviously, lows can be really dangerous, and also have a major effect. The Dexcom clarity app definitely helps me with that, and has allowed me to see in real time throughout the day, my time and range or moments when it's not. And that's the thing to remembers, as a type one diabetic, you know, my main advice to newly diagnosed people is just to take a deep breath, and try to understand that there's going to be days that are unpredictable and harder than the others. And don't get down on yourself for that there are helpful tools and things that make that a little easier. But it is a journey. And once you can keep a positive attitude, it'll be alright.

 

Melissa Katz  6:11

So that would encourage other people with diabetes to have this conversation?

 

Nick Jonas  6:15

Well, I think there are a lot of ways, I think we hope to kickstart conversation here, obviously, around the importance, time and range and how it makes people's lives better. And I can speak to that personally, which really has become such an important thing for me to think about that time range and what it really means and not only relying on a one C, which would be your you know, kind of collect reading for two to three months and quarterly reading. This is a really valuable real time tool. And there's there's a lot of assets for people that maybe want more information, want to learn more about this and the impact you can have on their lives with their family and friends lives, when in range calm is a good one, obviously, and other social media tools and links that we'll share with you later. But a lot of good conversation starters out there and thrilled to be able to help in that process.

 

Melissa Katz  7:06

That's a great way to segue to Jessica apples question. She's from a sweet life. And she's asking, we know CGM is a great way to monitor time and range. But what's the best way to achieve time range in your opinion?

 

Nick Jonas  7:19

Well, everyone's journey with diabetes is different. And so I can only speak to mine. For me, it's a combination of obviously relying on my doctors kind of input and real time changes that we make to, you know, my life with diabetes as a whole one. And part of that is physical activity. Diet is a big aspect or just meal management and kind of understanding what's serving my body. And a lot of ways because I live such a crazy lifestyle, I think of myself more so as a an athlete in some settings and kind of prioritizing, living a healthy life with my diabetes, but also wanting to perform my best. And so there's, there's a combination of things that come into play there. And one of the other aspects is obviously, knowing where my glucose is a real time. And Dexcom definitely helps with that pretty obvious. And you know, I'm, like everyone else in the world person that looks at my phone way too much. And so having that information, right there is really helpful. Again, that's just my kind of personal, customized journey. And it's, as I said, a combination of all those things, but for everybody out there, it's gonna be different and you got to figure out what works for you. But having a bunch of tools in your toolbox is a helpful thing. And so that's probably a good place to start.

 

Melissa Katz  8:31

Alright, so speaking of athletes, it was a big moment, during the Superbowl to have you up there doing awareness raising and education about CGM. That was pretty exciting. However, there was also some concern afterwards about access. That was a big conversation that occurred which was I think, was a good thing. And Ross Wallen from diabetes daily is asking, CGM can be expensive both in the US and other countries, especially those without robust healthcare systems. And in some countries, it's not available at all. Is there any worry about emphasizing time and range when some people won't be able to access CGM?

 

Nick Jonas  9:03

I think that very aware all of us on this call and beyond and all the partners, the need for access and that growing conversation and priority for us all in the US and globally. You know, I think that that the exciting thing for us was starting the conversation about awareness in a big way on something like the Super Bowl was a really big step. And so I was thrilled to be a part of that. And thinking back to a time You know, when I was newly diagnosed, if there was someone that I looked up to or admire, who normalized something like diabetes for me on a stages basis, that would have been really exciting, which I think just again, helps the bigger conversation of this need for access around the world. And we have the onsite one are fully committed. We have a wonderful board there that that have been speaking about this a lot and really building a game plan from the ground up and wanting to see that change really happen and do all we can be part of it as well as the other partners I know that are on this call. So it's priority for us, and definitely something we'll work on is. But as you said, the Superbowl was was such an exciting moment, and something that I hope we can do more of taking diabetes to big stages like that. And just normalizing a bit.

 

Melissa Katz  10:25

Absolutely. So you mentioned A1C earlier, and my classic is with diabetes, mine is asking a when c remains the gold standard for diabetes care, where does it fit in this admission?

 

Nick Jonas  10:38

Well, I'm certainly not a doctor. I wouldn't even consider myself a diabetes expert, obviously, even though I've lived with this thing now for quite a while and have my days where I feel like I've really nailed it. But I would say A1C is a useful piece of data. But as I mentioned before, you're talking about a collection of numbers and you receive that data after a certain period of time, our world and specifically my world on so many people out there moves at such a rapid pace that the more information we can have at the fingertips, no pun intended, is really an incredible thing. So I think that that time and range shows the trends in real time provides much more complete picture of glucose control over time, which is really a great thing. It's not to say that it's a, you know, one or the other. You know, there's many ways to manage your life with diabetes and enhance your life diabetes, but I think that the more information you have, the better it's going to be. And the more time and range, it just is obviously going to be

 

Melissa Katz  11:42

better days. You probably know all of our diabetes media or either have type one or have a family member for the most part. And Stacey Simms is a mom with a son who has type one, and she has a podcast called Diabetes Connections, and shows her a little bit more about your personal journey. So her question is, we'd love to hear about how you prepare for and recover from physical days.

 

Unknown Speaker  12:05

I know you have a lot of those.

 

Stacey Simms  12:11

Right back to Nick answering my question. But first, Diabetes Connections is brought to you by Gvoke Hypopen . I mean, you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar. And in the case of very low blood sugar, why do we carry emergency glucagon there's a new option called Gvoke Hypopen, the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes connections.com and click on the gvoke logo gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke Glucagon dot com slash risk.

Now back to Nick Jonas, and he's answering my question, actually a listener question about what he does to plan for and deal with very active days.

 

Nick Jonas  13:05

Yeah, I mean, I have a physical day coming up today, rehearsals and I'll be moving around singing and dancing around all day and all that and, you know, my PrEP is really to try to get good rest, and then start with a good meal, something that kind of sets me up for success with all the necessary protein and macronutrients and other sort of sustaining carbs. And then from there, just about staying on top of it. I like to just kind of frequently check in and see where I'm at and make real time adjustments. Knowing to that, obviously, the physical activity is going to have an impact. And whether it's this thing I'm doing now, or touring, or even just going out for day golf, you know, I'm always trying to stay on top of it and rely on my friends and family to if there are things that I need or if I need a second to take care of something, whether it be high or low blood sugar, then I take the time to do that.

 

Melissa Katz  13:55

Yeah. All right, as I said, faces a mom. So she's also concerned about your sleep. And she's asking any insight for your routine and how you prepare for sleep. Well, I

 

Nick Jonas  14:04

think like most people, my routine is basically to watch Netflix. So I get tired and hope that I can just sleep peacefully through the night. That seems to be the routine these days. But outside of that, it's pretty simple. I just, there's a certain range I like to be in before asleep, so that I don't overcorrect. If I'm higher or low that I'm hanging out there too long. I try to kind of target that range. And then obviously, you know, the alarms within the Dexcom really helps well and when I'm traveling I'm not with my wife, I'll share with her and that kind of gives her peace of mind which is a wonderful thing and really helpful tool.

 

Melissa Katz  14:44

Alright, so we're talking about the Super Bowl and we've heard so many sprays of little kids kind of jumping up and down. So excited to see you on TV. And you are diabetes role model for so many people. I'm curious about who were your diabetes role models when you were growing up?

 

Nick Jonas  14:58

Well when I was newly diagnosed that there really wasn't a person that I knew of that had diabetes or a role model of sorts, you know. So I think it was a real goal for me to be pretty outspoken when I was newly diagnosed and living a pretty public life, hoping that it would bring people some encouragement and that they would have someone to feel like they're on a journey with and what's happened is in being more open and honest and kind of outspoken about living with type one, I feel like my life's been enriched by hearing stories, feeling encouraged, you know, whether it's watching the superbowl commercial with their friends and family and feeling normalized. All of a sudden, or or, you know, whether a song that I've written I've spoken about this journey has encouraged them, those stories that in turn encouraged me and those become my role models and my heroes, my diabetes heroes.

 

Melissa Katz  15:52

Alright, so what resources should we be finding people to about the movement? Well, one enraged,

 

Nick Jonas  15:57

calm is a helpful one, lots of educational resources there. And you know, of course, there's this little thing called social media, it can be very helpful. So hashtag one range, and there will be lots of other assets, I'm sure you guys will share with them. But really, again, excited for me to start this conversation. And, you know, to be working alongside some partners who I know are passionate about, not only this initiative and program, but also doing good in the world and the nonprofit aspect of this the thing that that is most inspiring and exciting to me, outside of the obvious, which is enriching and encouraging people to you know, live with time and range, you know, that which is it's been an invaluable tool for me. So, a lot of positives here and thrilled to be a part of the conversation.

 

Melissa Katz  16:43

Well, thank you so much for the time this morning. We know how busy your schedule is, and how important the diabetes community is to us. So thanks for making it a priority.

Thanks for having me.

 

Stacey Simms  16:51

You're listening to Diabetes Connections with Stacey Simms.

As always more information at Diabetes connections.com. If you can't find the show notes on whatever podcast app you're listening to, you can find him there. If you're new, and you found us because of Nick Jonas, we are coming up to 400 episodes now. And I have a very robust search on the website. So if you want to hear about athletes, or celebrities, or technology, or just living with type one, or even type two diabetes, you can find out more at the website. And please let me know if there's an episode you would like to hear.

Listen, I'm really glad they asked a couple of my questions. And they were actually your my listeners questions about his active routine and about sleep. And about his diabetes role models. I've sent that one in too. But the questions I wish they had asked was the one I sent in about access and affordability about insulin editorializing here, obviously, but look, a huge impediment to time and range is the cost of insulin and the supply of insulin, especially here in the United States, where we have mentioned this before one in four people are rationing their insulin, I would love to see Nick Jonas, take a stand on that. I know I'm not alone, boy, he could really make a difference just in terms of public education. So you know, we'll look we'll keep pushing, we'll see what we can do there. But I do appreciate you sending me those questions.

Diabetes Connections of the group is where I do most of my communication in terms of you know, getting listener questions, finding out what you want to know more about. So please join Diabetes Connections, the group on Facebook if you haven't already.

Alright, and as I have said, Dexcom is a sponsor of the show, and we have been using the Dexcom system since Benny was nine years old. We started with Dexcom back in December of 2013. And the system just keeps getting better. The Dexcom G6  is FDA permitted for no finger sticks for calibration and diabetes treatment decisions, you can share with up to 10 people from your smart device. The G six has 10 day sensor wear and the applicator is so easy, I haven't done one insertion since we got it Benny does everything himself. Now he's a busy kid, knowing he can just take a quick glance at his blood glucose numbers to make better treatment decisions is reassuring. Of course, we still love the alerts on the alarms, and that we can set them how we want if your glucose alerts and readings from the G six do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

Before I let you go, just a reminder that every Wednesday live on Facebook, I'm doing in the news. It is a five or six minute roundup of all the headlines and news in the diabetes community of the past seven days that's live on Facebook at Diabetes Connections, the page and that's 430 Eastern on Wednesdays and then we turn that into a podcast episode. You can find it on Instagram and the YouTube channel as well. I'm having a lot of fun with that. And I'm working on my set on my studio. We'll see I have a green screen. You know we're working on some lighting. I don't know. It could look great. It could look very silly. I'm sure you will let me know. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then be kind to yourself.

 

Benny  20:11

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Mar 25, 2021

We can't wait to enjoy live theater again! That made us think about some of performers we've spoke to over the years. Maddy Trumble performed as Mary Poppins during that national tour and has also played Elphaba in Wicked. She was in the original Broadway production of Newsies, and many more plays and musicals.

Maddy was diagnosed with type one as a kid, and always knew that she wanted to be a performer. Maddy gets real about the cost of this type of career - she's had trouble with health insurance as its tied to constantly getting performing jobs. And we catch up to her to find out what her life has been like since this original interview and during the pandemic.

This interview first aired in November in 2016.

Check out Stacey's book: The World's Worst Diabetes Mom!

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Episode transcription (rough transcript, beta version) 

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by inside the breakthrough. A new history of science podcast full of Did you know stuff?

 

Announcer  0:14

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:20

Welcome to a classic episode of the show. As always, we aim to educate and inspire about diabetes by sharing stories of connections with a focus on people who use insulin. Our classic episodes are a look back at some of the people's stories and research we were talking about at the very beginning of Diabetes Connections back in 2015, and 2016. We have a lot of new listeners since then, chances are you haven't gone through all 360 plus episodes. So I like bringing these to you with an update on what's going on.

So I first spoke to today's guest, Maddy Trumbull back in 2016. And I had forgotten why I went looking for a Broadway play person in the first place back then. Well, it turns out, we had just seen Newsies, the Broadway touring company, here in Charlotte, and Benny and Leah, my daughter, we were all talking about how athletic a show that is, if you haven't seen it, and there's, you know, the original movie, certainly, but they made a movie out of the Broadway show. And that is really, really worth watching. It is not only singing and dancing, there's a tremendous amount of gymnastics. I mean, the choreography is, it's incredible, and it's exhausting. It's nonstop action. So Benny said to me right after the performance, he said, I wonder how you would do a show like that with type 1 diabetes? You know, he didn't say like, could you do it? His question was more like, how do you do that? How do you manage it? Which as the mom, I really liked that question. So I thought, there's got to be somebody we could talk to about that. Right? people with type one are doing everything. So I put out some feelers and we found Maddie Trumbull. She was actually in Newsies. And there's lots more to her story. And I'll give that to you in just a moment. But first, this episode of Diabetes Connections is supported by inside the breakthrough, a new history of science podcast that explores the idea of a eureka moment. its historical wisdom, mixed with modern insight, sort of a mash up between a history show and a science show. And it's funny, and it's entertaining. It's really well done. The latest episode takes a look at who takes part in psychological studies, you're the studies that are looking at human behavior that's supposed to be universal, but it turns out most of them only studying a particular group of people. That turns out to be anything but universal. It's a great episode full of surprises. I love this show. Search for inside the breakthrough anywhere you listen to podcasts, you can find it wherever you found this one. This podcast, as you know, is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. Did you see the national tour of Mary Poppins or maybe wicked? Or maybe Newsies on Broadway? Then you have seen my guest Maddy Trumbull actually played Mary Poppins in that national tour. She has also played Elphaba, the Wicked Witch of the West before she was the Wicked Witch of the West that said wicked under all of that green makeup if you've seen that show. And as I mentioned, she's been in Newsies on Broadway as well. She was diagnosed with type one as a kid, she always knew she was gonna sing and dance and be a performer. I was really excited to talk to Maddie about you know how she does all of that and travels. Again. This interview was taped in 2016. And of course, the last year has been difficult for everybody. But when you think about live theater, it's just not happening. And Maddie I reached out to her and got an update. She says she lost her insurance when Broadway shut down. And she did she was very honest, it wiped out her savings she was paying for Cobra. So she said I wasn't willing to give up her pump and her Dexcom. We actually talked about that at the time about how difficult it was to get insurance when you're not performing steadily. So it was already difficult back in 2016. And it's gotten much more difficult in the past year. She does say I'm okay for now. I'm living in Chicago with my boyfriend working at a bakery waiting for my industry to reopen. And Maddie, I will ping you when things go back to performing and stage shows are happening again. Let's catch up. And boy would I love to come see you. So here is my interview with Maddie. And I'm calling her Madeline at the beginning for some reason. But here is our interview from five years ago. Natalie Trumbull, thank you so much for joining me today. I'm excited to talk to you.

 

Maddy Trumble  4:40

Oh, thanks for having me, Stacy.

 

Stacey Simms  4:42

I have so many questions about performing and what it's like. But let me back up to more of the beginning of your story. Because you grew up with type one when were you diagnosed? Yeah,

 

Maddy Trumble  4:54

I actually was diagnosed

 

technically on the first day of kindergarten. So

 

My dog shot had just been diagnosed. I don't know how I can't really remember I was four. My dog had been diagnosed with diabetes that summer. My mom has a PhD in child psychology. So she This is before the internet, they had all these, you know, medical journals. And you had done lots of research on diabetes bushi knew, you know, the symptoms, like going to the bathroom lot and being really thirsty. And I remember, we went to a friend's birthday party at it was like in a park and the bathroom was like up a really long walk up a really steep hill. And I just remember I went to the bathroom. And of course, like two hours, like six or seven times, I remember walking up that hill. And I remember that was when my mom was like, I think Celine may be up so when I went to the doctor to kind of get all your shots and tests for when you start school. And I was like, Can you just throw in a type 1 diabetes test and so confusing. I found out on the first day of kindergarten. And luckily my blood sugar was not so high that I actually didn't have to be hospitalized. I think it's pretty, as I've heard, it's pretty unusual. But that was the first 15 minutes for that. I just celebrated 22 years. Wow, man. I mean, diabetes. Yeah. 22 years. I'm,

 

Stacey Simms  6:27

what was your dog's name? That was fast. They went by fast.

 

Maddy Trumble  6:30

Oh, the document was shosh it's um, it's, it's, it's some other language for there. I can't remember. My mom is a fuzzy, hippie. hippie. We're from Berkeley, California. Yeah. shosh. So what was it that

 

Stacey Simms  6:48

was it funny to have a dog with diabetes and a kid with dijet confuse your friends at all?

 

Maddy Trumble  6:54

No. Well, we used to, like, you know, we used to do our shots together. And I would give shosh her shot. And then I get my shot. It was kind of cute. We were bosom buddies. Yeah. I can

 

Stacey Simms  7:07

imagine from your perspective, that was pretty helpful in a way. I mean, you had a buddy.

 

Maddy Trumble  7:11

Yeah, definitely. I'm like, yeah. I mean, it's so hard to remember. But I do remember giving our shots. And then I think I was I was giving myself my own shots. And I like after a couple of weeks. You know, I know that takes a lot of kids a long time. And I think that made it a little easier. But I had, you know, I've been given my dog her shot for a little while. And so yeah, it was like, I think it made the transition a little easier. in a weird way. But that's fun. Yeah, I don't think about that often. And my dog having diabetes, I completely forgot. Yeah.

 

Unknown Speaker  7:51

What kind of dog? What was shosh?

 

Maddy Trumble  7:54

Oh, gosh, she's a big month. She was big and like really big and had long black hair? Not quite sure.

 

Stacey Simms  8:01

Um, well, for is very young to be diagnosed. I mean, I understand that you don't have a lot of, you know, memories other than going up and down that Yeah. Do you remember growing up with type one? It's hard to ask again at that age, if it changed anything for you. But did you accept it pretty well? Do you? Did your friends do okay with it?

 

Maddy Trumble  8:23

Yeah, I yeah. It's tough to remember. I think I did. I never saw it. I remember that when I was diagnosed, I was the first time I remember at least seeing my parents cry. And I remember thinking that was weird because I didn't know what the big deal was because I was just like my dog. But I and I, like I said, I started giving myself my own shots for right away anyway, I don't think I ever saw it kind of as a as a disability or something I had to deal with. I think I kind of saw it as more of something that made me special. And like every summer starting that when I was five that you know, the next year, we went to diabetes camp, we went to a family camp for a few years. And so that was always like, not a good thing. But it you know, brought opportunities and I met lots of friends that I wouldn't have met if I didn't have it. Yeah, and I don't really remember from being kids the bad times, which is good. You know, that kind of came later. Like when I became a teenager and started having some denial that disease would never go away, which is really, I still have a hard time dealing with that. But when I was a kid, it was like what am I doing on shots and my friends thought it was cool and all my friends wanted to learn how to work and then when I got a pump in middle school, my friends all wanted to learn how to give my money Insulet in case I know in case I ever needed them in an emergency. There's always a kind of an opportunity for i don't know if i You know, as a negative in my life, that kind of came later, I totally understand that my

 

Stacey Simms  10:06

son was diagnosed very young at age two, and we're just getting now to the point where he's, he's in middle school. And he's kind of like, you know, used to be diabetes. And I love my friends from camp and, you know, I just yeah, natural for a teenager to be excited about it would be a little different, in a way.

 

Maddy Trumble  10:25

Yeah, it's definitely like, if it gets old, you're like, Oh, this isn't going away.

 

Stacey Simms  10:31

So when did you know you wanted to? When did you know you were interested in theater? Is that something that you always remember? Or did something happen when you were a kid to flip that switch?

 

Maddy Trumble  10:42

No, that was always my dad was an actor. He My dad is my dad is deaf. And so he kind of became an actor, kind of by accident. He was not never went to school for it. But back in the 80s, when Children of a Lesser God was on Broadway they needed there's one. There's one character in the show who is deaf, but needs to have very good speech. And my dad speaks really well. It's really good speech for a deaf person. And anyway, so they, I can't remember the exact story. But somehow he fell into this Broadway show. And he lived in New York for a while and, and he was like a lover of musical theater, and so was my mom. So we just like always had it growing up. I remember my first one. I mean, I was obsessed with the Wizard of Oz, and all the old movie musicals. I was little. And I don't think it never was like a decision was made. And then my mom, I'm from the Bay Area from Berkeley. And there's a ton of great community theater there. And so my brother and I, just one day, my mom was like what we should you should go audition for Annie Get Your Gun, which, you know, has kids in it. And we went an audition and I think singing in the rain with the I had an umbrella as a prop. Yeah, and my brother and I, we both were. Both were cast in the show. And kind of that's sort of what changed it. I was seven, and he was not. And we both really fell in love. And then my little sister too, eventually started doing it. And she's still acting out. She's on the sound of music tour. Going around America right now. So yeah, I was always in a family is there? We all did it. We all did shows together. made it easier for my mom, she has like one place to dry. That's cool.

 

Stacey Simms  12:35

So you have three have a brother and sister.

 

Maddy Trumble  12:38

Yeah, there's the three of us. Yeah.

 

Stacey Simms  12:40

I have a very ignorant question. But you said your father loves musical theater. It's hard for me to understand how someone who's deaf can have that sort of appreciation. Can you can you try to explain some of that to

 

Maddy Trumble  12:52

me more? Yeah, I remember him talking about. I mean, he's an actor and he and to us musical theater is so much about the music, but if you've watched he like loves Jim Kelly and Fred Astaire, and he loves finding crowds, Barbra Streisand, because she's such a fantastic actor, and she, her hands, her fingers and her fingernails. I don't know if anyone loves Barbra Streisand as much as I do. But she is the longest fingers and uses her hands in a really interesting way. And so my dad, it's all visual for him. You know, he can't hear the music. But you know, engine Kelly is so fun to watch. You could watch him without music, and it would still be entertaining. I think it's like the visuals in musical theater. And he was an actor. So we talked about what to do with your hands and how hands are really important, obviously, for him to that's how he talks. But yeah, so is the visuals in musical theater. I think more for him. And this style of acting, I suppose also, because it's can be a bit more exaggerated and lots of which is something that would speak to him, I suppose. I've never asked him about that. But he was really into Gene Kelly singing in the rain was like another one of my favorites. Oh,

 

Stacey Simms  14:12

I've seen that movie a million times my sister and I, we had we had in the olden days, we taped it off of PBS one time with our VCR. And we went over and over again. And when I see it now I wait for the pause, because there was a pledge drive when we taped it. And so in the 40 minutes or so they were interrupted for 20 minutes. So I know where those pauses come at is such a

 

Maddy Trumble  14:41

fun drive. Oh, yeah. Yeah.

 

Stacey Simms  14:43

So. So tell me a little bit about performing though, with type 1 diabetes as a as a teenager as a kid. I mean, I imagine you had to do a few things to help yourself out. Can you talk about that?

 

Maddy Trumble  14:55

Yeah, I'm not really. I'm trying to think of A story from when I was a kid, I'm not really remembering. The only thing I remember, I just, I got a pump in the summer before sixth grade, which is when I played anime and anime. And I remember having to do that and having it show through my costume. And that was honestly that for me as a kid again, I've been you know, no big deal. That was the biggest deal. I remember thinking. So you know, when you are, when you're performing, you usually have to wear a microphone as well. So it's like you have one extra machine on you. Anyway, so that's what I remember. I'm trying to think of something that happens maybe that I,

 

Stacey Simms  15:48

that's okay. I'm just curious. Did your parents like when you're performing? Do they want you to check your blood sugar before? Did you have snacks backstage?

 

Maddy Trumble  15:56

Or do yeah, that kind of thing? Yeah. Yeah, it's tough one. Because when I, I've been lucky enough to get to play a lot of these in shows and who don't really leave the stage. I'm just thinking, like, when I played Mary Poppins. I also have no problem I kind of really rely on you have a dresser who kind of needs you backstage? Every time you're off stage to give you water and and you know, if you need to change your costume or fix your makeup, they're kind of there. But you're never really offstage for more than no 20 seconds. Wow. So I'd always Yeah, so I've been you know, they always had glucose tabs or juice. And I would always, and when I was a kid, too, I'd put, I'd have like a little box on either side of the stage and in my dressing room. And yeah, cuz it's really, I mean, it's scary to be low, no matter what. But it's really scary to be low. And you're in the middle of the show and doing a dance number. And I've never had any major. Anything. I've never been so well. But there's been a couple times where it just gets it gets a little scary. And you can't leave the stage Really? Yeah, I remember one time Mary Poppins we were doing steppin time, which is this huge, like 12 minute long tap numbers. And I was starting to feel low, and then it kind of really hit me in the middle of that ever, which is a really, really bad time. And then you don't leave the stage again for another 10 minutes. And I've never, I've always a thought every time I do a show like I'm going to have there's going to be a point where I leave the stage or I'm going to have to stop and it's just going to have to be okay. Because it's just gonna have to be okay, because that's the most important thing is not the show is my health. But I've been lucky I haven't had to, do you

 

Stacey Simms  17:47

ever think about keeping, like glucose tabs in your costume? Because, you know, I know Mary Poppins can't be eating in the middle step in time, but you could like sneak it. Yeah, something like that.

 

Maddy Trumble  17:58

No, I never did. That's a good. There was always something. I guess if I if I'm in if I'm ever in a show where I can't leave the page for a long time I will 100% have to have something But Mary Poppins was that that one scene was strange when I was low, because I was on stage for like 20 minutes straight. Usually there's, I could run off stage as I needed to. And there's always someone nearby. And you know, I always tell everyone on the first day stage management just so they know. And everyone's always very understanding. I'm always so curious about it. And I should come to rehearsals with like a brochure. It's on the literature. But I just tell them and they're usually Yeah, I've not had any crazy, crazy thing I've had to deal with yet.

 

Stacey Simms  18:52

Do you have a blood shock? Yeah. Do you have a blood sugar goal? And you certainly don't need to share specific numbers with us that you'd like to be in or range that you'd like to be in when you are performing at the beginning of the show?

 

Maddy Trumble  19:05

Sure. Yeah, definitely. I, I mean, normal for me is like a little higher a thing than most people's. I like using one and 150 and right before the podcast. I was 137. So I'm patting myself on the back. But definitely the before show, because the adrenaline and everything. It's so easy and just running around and I just did last year I did a vivo which is and I played Eva Peron, which is the lead and like she really, I mean, I left the stage a lot. But every time I was backstage, I was changing my costume and my wig. And so it was just really there was never a moment to sit down. Never a moment test my blood. So I'd like to start ideally, like around I feel like around 200 because my buzzer is not going to go up when I'm doing a show. So I'm going to go down. So that will be the ideal. Do you

 

Unknown Speaker  20:07

always have? Yeah.

 

Stacey Simms  20:08

Do you wear an insulin pump during the show? Still? You kind of mentioned that earlier. Just curious to do do you keep it on under your costume?

 

Maddy Trumble  20:18

Yeah, I do. I'm trying to think if I, I think I took it off for a veto, because that one was so short, the first act of like, the first and second act are both about an hour. And there were so many costume changes. And so it's so much running around. I think I did take it off of that one. We have Mary Poppins also, I think it would be different with costumers are so fantastic and can figure out where to place it. But with Mary Poppins I wore, there was no way anyone was going to see the Mary Poppins I had two microphones, because it gives you one, you use one, but then you have a backup in case the first one dies or goes dead because there's isn't time to change your microphones. So I have two microphones and my insulin pump, but no one saw because I had these huge dresses and a buffalo so they kind of I usually put them like in the like on the small my back. So no one's gonna see them because, but I'm trying to think if there's ever had a costume where I was worried about it being seen, I don't think so. I've been lucky to be very close in all my shows.

 

Unknown Speaker  21:24

Okay, yeah.

 

Unknown Speaker  21:25

What kind of pump do you use?

 

Maddy Trumble  21:26

I have a mini med. I've had a mini med forever. A mini med paradigm. It's purple. It's very pretty.

 

Stacey Simms  21:39

Do you use a continuous glucose monitor with it?

 

Maddy Trumble  21:42

You know, I don't know. But I have a girlfriend in New York, who I actually met in Chelsea Market. I don't know if you went there when you were there. So it's really cool to just like walk through market. There's the IMF. And we were in the bathroom until the market and this girl was like really beautiful red hair, and exact. And she had like a really cool outfit on. And she had the purple tongue, like, on the outside of her pants, which I thought was really cool. And because I never wear like you can never see my pump. It's always somewhere hidden. And she was just wearing it on her jeans or their cool outfit. And I just said I was like, Oh, I like your pump. I have the same one. And first of all, for me to start a conversation with anybody on the streets in New York is really unusual. But I'm so glad I did. Because she was like, I just moved to New York. And I you know, I'm just wondering, like, Can I get your phone number and maybe we can hook up for lunch. And it turned out that we had a lot of friends in common because she's also in theater. And anyway, she's like, become my girlfriend. What was I saying? Oh, I just hung out with her the other day. And she just got a Dexcom. And she has a an Apple Watch. And she was just showing me she was like, Look, I'm just looking at my watch. And it tells me what my blood sugar is. So I do not have a continuous glucose monitor. And my mom has been trying to convince me for years to get one. But I just always been weird about having a second machine attached to me. But it's so clear. My friend Claire was showing me it's so small and I don't know, I'm gonna have to really think about it because it seems like kind of a really cool thing.

 

Stacey Simms  23:18

Well, we've used our since for three years now. So if you would like to know the opinion of someone who's No, he was nine when he started. So he can you know, I do I think that the there there are. had to say this. I really Okay, so first thing is I'm the parent, right? I'm not the person with diabetes, right? So I of course love it, because it helps me take care of him in a way that finger sticks, you know, didn't give me the window that I wanted. But my perspective is not his you know, he likes it because he doesn't finger stick as much. And everybody uses it differently. And it's not labeled to not do finger sticks yet. But um, but that's really why if you ask him, that's what he likes it and it gets this mother off his back because I can just see his numbers. I don't have to ask him what's going on.

 

Maddy Trumble  24:11

Can you see that on your phone? Yes. Or Oh, wow, that's crazy.

 

Stacey Simms  24:15

Yeah, so he was right with the current Dexcom. He can have it on his cell phone or receiver. And that I can see it on my cell phone. And he is the one who wears the watch. He has a Pebble watch, which is a little less expensive than the Apple Watch. And he wears a watch so he can see it and it's more discreet for him in school. He doesn't want to pull out his cell phone. because nobody's allowed to have a cell phone at school. So he keeps his cell phone his backpack and then you can just look at his watch. But for us the best thing about the Dexcom is seeing trends, you know, because he's overnight his number, bananas because of puberty and everything else. And it That to me is the number one advantage is you really get a window. Yeah, you know, and I've already done a commercial for Dexcom in this podcast. So that's another one

 

Maddy Trumble  25:01

Yeah, I think it's something I definitely need to look into it. I have an appointment next week with my endocrinologist and Dave and Dave also want me to get I have a new one this year, but a new endocrinologist, he's been trying to convince me, I mean, it seems like a pretty cool thing. thing. I was just so hesitant, because what's also hard, I've had diabetes for so long. And I've kind of been doing the same thing the whole time. And the thought of having something else come in and kind of interrupt What I know is scary. But, but also at the same time I've seen technology grow. Because in the last 20 years, that's, that's when I first started my first meter was 45, it might have been 60 seconds. I mean, 60 seconds, and like a huge drop of blood, and then 45, and then 30, and then 15. And now five, and you know, then I got the pump. And it's certain point and so, but for the last 15 years or so I've been I've been doing the same thing. So that's what scares me. But I really should welcome it. And it's exciting. And sometimes I don't always feel when I'm getting high. And I'll test and I'll be shocked. So I think that would be a good thing to have, because it was kind of right, you know, yeah, I have alerts for you as well. We love it. But

 

Stacey Simms  26:19

at the same time, I totally understand what you're saying. I mean, you're you know, I have a lot of friends, who it's funny when you when you have somebody in your family who's diagnosed suddenly everybody comes out of the woodwork and you realize that you knew people. And I have a friend who Yeah, he tested one of the first pumps when he was in middle school. And it was a painful process. I mean, this is 30 years ago. So he it turned them off for pumps forever. And then he's got a pump in his 40s. He didn't want he just didn't want to do what he was doing fine control and he loves it. But you know, if he didn't, he will go back to what he was doing before. So you don't. Here's mom's advice. You

 

Unknown Speaker  26:52

do what's right for you. You know,

 

Stacey Simms  26:54

go check it out. Don't feel pressured. But yeah, cool. Is it that you made a friend? It's always funny when you see people with a pump or checking. Because you know, sometimes you don't want to be weird. But it's so cool that you are able to say something nice, great.

 

Maddy Trumble  27:09

Yeah. I feel like I see them all the time on the subway. And I never, I never Yeah, never want to say anything. But some reason she we looked like we were taught from the same cloth. So I yeah, I'm glad I said hi. And maybe I will again next time I see the Father.

 

Stacey Simms  27:27

So how did you get to New York? I mean, I know it's a long process. But as you mentioned, you're from you're from Berkeley. Yeah. And you were performing as a kid. But you know, a lot of people try to make it in theater. What was the I mean, not the whole process of

 

Unknown Speaker  27:42

how did you do it?

 

Maddy Trumble  27:45

Yeah, I grew up doing theater and my mom is so incredibly supportive. It's I I don't know how she and she loves theater. And it was never a question of, should I do this or anyway, so I found out I think we were in New York City. When I was in high school, we were seeing some shows. And I started noticing that people and their buyers and playbills were listing where they went to school. And I think I didn't even really know that you could use a major even got a BFA in musical theater, and I didn't know that that you could even do that. I think I kind of figured you had to go to NYU for acting or, you know, I didn't know any better. And so I was seeing BIOS, and I was seeing all these people. So many people have the University of Michigan in their bio. So I went up to a couple people after the show that season door and chatted with them about an actor's are so nice. And you know, they talk to you about the schools they went to. And so I looked into Michigan, they had a summer program for rising seniors. So the summer before my senior year, I did a three week musical theater intensive with the head of the University of Michigan Department of musical theater. So I did that. And then I love the school. I love the faculty and I audition, and I think three of us on this on our program got into the school. So I went to the University of Michigan for musical theater, and I did that for four years. And that was a tough four years. Because I've never, I had never really had any sort of training or I took voice lessons here and there and some acting classes, you know, maybe every other year, but I never I just did shows because it was fun. I just, I liked to be in plays and to all of a sudden be in a university setting where I was being graded on my acting and my singing and dancing was so strange to me. So I kind of had a hard adjustment and you know, it's an incredibly competitive environment. You know, there's there were 19 people in my class. Here's a group of like, 100 kids and everyone wants To be on Broadway and everybody wants to get the part in the show. And yeah, it was definitely a hard it was a hard. Four years. I think that that's what made me grow so much. And anyway, so I did four years at university. And then I did we did a senior showcase, which a lot of musical theater programs do, they put together like a 45 minute show, and everyone gets a couple minutes to kind of show themselves and what they do best. So some people in my class dance. Some people did like, you know, a little song and dance on people. I did I just sit there and saying, because that's what I do. And a bunch of industry people come agents and casting directors. And so from that I got an agent. Most people find was an agent, but then also from that, which doesn't always happen, but I got an audition for Mary Poppins, the casting director of Mary Poppins came to the showcase. And he actually called it up like pretty much all the girls from my class, went in an audition, and I had an audition and it went fine. But then I went away for the summer. And I never heard anything, never heard anything. And then I got a call all of a sudden, I was doing a show in St. Louis, during summer stuff, and they said Hi, can you come in for a callback or Mary Poppins? It's this day, so I had to take time off from St. Louis and go to this audition, and I got, I got the cell, like, right away. They called me when I was walking out of my audition. And they said, it was Thursday. And they said, Can you start rehearsal when Monday, so So I started on Monday. So that'll happen. It's so incredibly fast. And that was I did a tour twice. I toured with Mary Poppins two times. So this is the first time I did it. I got so I don't know if it was luck or timing or something. But so I did that tour for six months. And then we closed and then I moved to New York City. So I moved to New York City kind of in a great spot. I had all these friends in the industry. And I've gotten to save up some money. And I lived with a girl that I had toured with. And I was really lucky to have a lot of people moved to New York City, they go for their senior showcase. And then they're just there and they have the like my little sister did that she went and she did her showcase. And she got an agent, and then she had to find a restaurant job and and somehow come up with rent money because living in New York is so expensive. And I was incredibly lucky that my Find New York journey kind of started off. And it also started off a little late. And it was cool that I got to go to New York and I had a show on my resume. So auditioning was a little easier. And yeah, I definitely was a very long winded story.

 

Stacey Simms  32:44

No, that was great. That was great. And, but but and then after you move to New York, you understudied and we're in a few other plays. Right? You were in Newsies. And you were in wicked.

 

Maddy Trumble  32:54

Yeah, well, so I'm trying to think. So I moved to New York, and kind of right away, I think I've been there for six months. And then I got Newsies really quickly. And I did that for a few months. And then I did Mary Poppins again. And then I taught again, and then I came back to New York. And then I did wicked, and I actually did the tour of wicked. And then I tore it again with wicked, and then I came back. So I've been in and out of New York, since I got here. People asked me how long I've been in New York, and I feel like I'm lying to them. When I say five years. It's really not. It's really an often that long. The Yeah, so everything just kind of happened really fast. When I got really lucky, kind of right away. And then this, these last two years, I worked the I left wicked about two years ago, these last few years have been pretty slow, which has been tough to to deal with, because I had so much success so fast. And this is kind of right now I'm experiencing what most young actors experience in New York, kind of like, I go to audition pretty much every week, and they go well, and there's always some reason you don't get it really stupid. Like the last one, I was too tall. For one before that I was too young, which is good. At least I wasn't too old. You know, I've never had to do with talent, and I'm still getting used to the rejection is tough. I'm getting better at realizing that it's really not about me, it's not personal.

 

Unknown Speaker  34:27

But let me ask you that.

 

Maddy Trumble  34:29

No, I was gonna say it's tough. When you're in New York with 1000s of other fantastic actresses. You can be as specific as you want, you know, you don't have to sort of make any sort of concessions. The casting directors are like, I want that person to have shorter hair, so that then they can find that person. So, you know, it's really tough, and there's so many talented people, so I'm just really lucky that I'm in a spot where I know I have girlfriends and boyfriends who aren't even. They don't even they aren't even getting the audition. They want, you know, they're like, a whole step further behind me in a way, you know, because I'm the least, I haven't been getting the audition. That's like, that's step one. And that's really tough to even get the audition. Because if you think about, there's 1000s of people, and you know, hundreds of agents submitting their clients for one audition, so they can only see 10 people. So the fact that I even get to audition is like a great feat. So I'm at least thankful for that. But I was like a job that

 

Stacey Simms  35:29

well, and that leads me to what I was going to ask, which is, yeah, as a parent of a child with type one, I'm listening to this. And I'm thinking, how is she paying for her supplies? And I'm trying to do the math, are you and I, this is a super nosy questions, I don't have to answer him. Are you? Are you on your parent's insurance? Like how do you do this?

 

Maddy Trumble  35:49

Okay, so I was on my parent's insurance. But then I turned 26. Right. So that was last year. So then all of a sudden, so I get my health insurance, we have fantastic health insurance, that we get it through the union through the actors equity Association, and the insurance they give us is so great. It's incredibly affordable. And the diabetes supplies are actually like, we have a really great deal with them. And I don't really pay anything for my insulin or my strips, which is kind of agnostic. And anyway, but you get I get up to my union. So you have to, they give you insurance, based on the amount of weeks you worked in a year. So this year, I have literally worked five weeks, and you need 11 weeks to get six months of insurance, or 19 weeks to get a year. So I am losing my insurance January 1, which is super scary. And it just kind of adds a whole other element. So when I go into these auditions, I have to stop doing this. But I keep thinking like the stakes are so high for me for so many reasons. Because I'd love a job. I'd love money. But also I really just need to work so I can keep my insurance, my fantastic insurance. So thank goodness for Obamacare and not being able to refuse people because of you know, pre existing conditions, because I don't know what I would do if that was the case. But yeah, scary. So January 1, but I don't know what I'm going to do. I'll have to figure something out. But yeah, I know, it's been incredibly affordable the last few years, which is great. And then I think January 1 that will change. Super disappointing. Yeah, I yeah, it's that's kind of always been like me, you know, I watched the week's take away this last year, I would watch them go and every audition I'd go to I'd be like, okay, it starts the state and then finishes the state. So if I get it, I'd have enough weeks to Yeah, but um, yeah, no, I, I lost it this year. So that's kind of been tough. And that more than anything else has made you kind of reevaluate if this is the right thing to do, because I shouldn't I don't know, shouldn't it shouldn't be about that. When I'm auditioning and singing and acting. It shouldn't be about getting health insurance. But that's kind of what it's been about for the last year. And it's just Yeah, kind of stressful. And

 

Stacey Simms  38:15

it's such a common, unfortunately, such a common thought among people with any chronic condition. And I hear all the time in the doors community, that people are staying in jobs, they don't want, you know, where they're, they're working for money that they need to only go to insurance. And yeah, that's that is tough stuff. Yeah, let's talk a little bit. I don't want to completely change the subject here. But okay, and this is another nosy question. So since you're just you haven't, you've done a lot of additions this year, but haven't had study theater work. Did you? Did you take another job? Did you take a waitressing job? That's kind of stuff.

 

Maddy Trumble  38:49

Yeah, so I don't think I've been super smart about it. I have a lot of money saved up from touring. Because when you tour you get a per diem. And your paycheck, you kind of just get the pocket your paycheck, which is pretty fantastic. So I have like a lot of savings from three years of touring. So I've kind of been living off of that. And it's tricky, because every time I have an audition, and have a callback, and then have a second and third callback, which happens all the time, I'm like, Oh, I'm gonna get it. So I keep putting off getting a real like high paying sort of side job. But yes, I have. I do like I have a little teeny tiny part time job at soulcycle, which is fitting studio, which I loved so much. But I'm kind of in the process of thinking about what else I should do. I used to take headshots, which I take pictures for actors, which is kind of a great thing to do on the side for money and I haven't done that in a couple years because I don't know I just have not sure why. But I'm thinking about doing that kind of just to make some extra money now to pay for my health insurance. And I luckily have not had to waitress yet. I think I would be pretty terrible at it. I'm going to avoid that it's kind of the best. That's the best way to make money. I mean, my sister was doing that before she left on tour and was putting saving money in the bank. But she's working really hard. And I would I just I don't I would not want to be a server in New York, I think it would be a tough job. New Yorkers are tough. And especially when they're eating, they want things to be perfect. Standards are really high. I'm not sure I'd be good at that. That's funny. And I've been little side jobs. Like I do little temp things, and I babysit sometimes. And but yes, I've had to kind of pick up some stuff to make some extra money. Because, yeah, see,

 

Stacey Simms  40:51

I heard from a few people, I put it on on. I put on Facebook that I was talking with you. And you've actually answered most questions that people had, which were about, you know, performing with Lowe's and, you know, hiding glucose and things like that, and would pump you Yeah, but I think a lot of the kids look at this and think, Wow, what a glamorous career. And I really want to do that. And listen, if you are you interested in theater, you are passionate about it. But I hate to say I'm glad to hear you talking about that. Because it's not a side of the working actor that we hear a lot about.

 

Maddy Trumble  41:22

No, that's not and it's not something I ever thought about. or even in college, you know, they say we'd have people come in and chat, but the people who would come in so they'd have masterclasses and, and lab with, you know, alumni, but all the ones who came in are the ones who are working consistently and live really glamorous lives and who make a lot of money. No one ever came in and said, sometimes you don't make money. And sometimes it's stressful. And sometimes you lose your health insurance. And sometimes you really get, you know, when you're going on. I mean, I haven't gotten and I pretty much had an audition every week, and gotten called back for a year. And now I haven't gotten anything for over a year. So that is hard. Just the rejection is really tough. Because I'm pretty good at laughing about it. It takes usually takes a day, I usually have to go to bed, I get really sad. And then I go to bed and I wake up the next morning. I'm like, okay, I can do this. Yeah, it's tough though. When you it's constant. It's constant nose. And that's tough. And I go back and forth between blaming myself because surely not my fault. But it's hard when you know you. And when you see all your friends kind of succeeding. And, you know, which is it? I hate that I hate comparing myself to them and feeling like I'm competing with other people. Because you're really I mean, you are, but you're not. And so it's tough. It's really tough. But that one is good. It's so good. So, yeah. David think that's Yeah, that's Yeah, got to be so normal and so awful in those groups when people are working and people aren't working. It's gonna be crazy. Yeah. Yeah. And it's funny, because we're all at a different place. Like I said, You know, I have girlfriends who like they would kill to be having the audition, but I have, but then one of my best friends, you know, just turned down at a Broadway show, because, you know, he's kind of at a different level than me. And he decided that wasn't really what he wants to be doing. And, you know, so that's his heartbreak is that he, you know, they wouldn't give him enough money to do the show he wanted to do. So, you know, I have a hard time sympathizing with that, but also have to realize that everyone's in a different days. Sorry, my alarm just went off. Anyway, so I just, you know, everyone is dealing with their own. Yeah, you know, and I have another friend who I just auditioned for him last week, he's, you know, supervising a show I want to do, or that I was auditioning for, and I didn't get it. And I, you know, texted him and I said, I'm sad. I didn't get it. And I don't really know what to do anymore. And, you know, I can't catch a break. And he goes, Yeah, I'm not Angelou, I understand. I'm with you. I can't even get the auditions I want. And in my head, I like but I just, I audition for you. And but he's still, you know, he wants to be auditioning for other new Broadway shows, and he can't get those auditions and blah, blah, blah. So anyway, everyone's got their own heartbreak, you know, kind of no matter what level you're at, but then when it good and when I get to be playing my dream roles and getting paid to, you know, do like sing these, this music, music I want to say like when I got to play when I got to do a veto, which is like my dream role. And it's like, fantastic. And when I get to be recovered and people are so impressed with me because I'm in liquid, you know, then it's great, but then so that makes it worth it. I suppose but I'm kind of right now I'm kind of trying to decide. Just how worth it it is. Yeah. It's just tough.

 

Stacey Simms  45:09

Yeah, you're at a crossroads. That's really wild.

 

Unknown Speaker  45:11

Yeah, definitely. Yeah.

 

Stacey Simms  45:13

Well, am I interested to keep talking to you over the next couple years? Who knows what will happen? So this time of year, I was trying to think, and I'll edit this part out, but I will I may end up running this during right before Thanksgiving. So that'll either set up or take at this next question. So for many people, yeah, for many people, their their yearly or their biggest exposure to theater, is that Macy's Day Parade where Broadway performers, you know, walk down the street in New York, it's amazing. And they're every show has a musical number. And I DVR this every year and fast forward through nonsense and just watch the musical numbers. Have you ever heard up is that I mean, that's gonna be freezing and hard work, and You're up early. But everybody's always smiling. And it looks like a lot of fun. What's

 

Maddy Trumble  46:06

that? Oh, no, I have not done that. Because I have not been lucky enough to be in a show that's happening during that time. But But I you know, it's such a little teeny tiny world we live in. So I'm friends with like, everyone who does those shows, and everyone puts her does the parade. Yeah, I heard it's pretty freezing. And they all look, they all look so happy. But I think it is kind of like, that's a cool thing to do. When you're like, oh my god on a day to day parade. I that's kind of what this business when you get to work in it. It's kind of constant. Things like I I watched other people do this, and I was a kid. Like, and so that's pretty cool. You're like, oh, neither am I like Julian coming through. Yeah, yeah. So yeah, I think that's kind of what people are, like, out here. It's cold. Like, I used to sit at home, you know, every day, every morning. And, and like, I remember back in Mary Poppins, I got to play San Francisco. And I was like, I used to come and like, watch people. Like, I used to come and watch people on stage. And like, now little kids are watching me. Like, that's pretty cool. And like that's why that's like why you do it? I mean, you we do it because we love it so much not because it's easier not to have you get paid well, or it's like we'd love it so much. And I have always loved it. And like I think all of us if we could do anything else, I if I could do anything else, I would do it. But I don't really want to. So yeah, I'm still here. When you're

 

Stacey Simms  47:37

talking about performing for those kids, and you weren't one of those kids, once you know, watching the show in San Francisco, I know that you've met some kids after the show who have type 1 diabetes, more and probably elsewhere, what's that like for you?

 

Maddy Trumble  47:54

Well, first of all, they're also going to be better at taking care of themselves. And I am, I'm so impressed with all of them. They're super inspirational, because I what and it's cool because like I it is I never realized that I'm talking about it today that I didn't used to. It's not used to get me down, even before when it was harder to take care of it. Like in the 90s when it took 45 seconds for my, my, my resolve to come out. But I didn't used to like let it get me down. And these kids don't either. It's just something cool about them. It's something different and something they get to talk about and something that their friends don't have that makes them special. So it's always like, I think with anything when you meet kids who are like you are it's the same with performing like when I you know, every once in a while when I get to teach classes or kids who are actors, like they just took a song and they want it I don't do it because like, they want to make money or they want to win an award. They just do because they love it. And I think it's cool to like meet kids who, like remind you of you and remind you that like Yeah. Yeah, and it's but it's, it's cool, because I remember my role models. There was this like girl group called the punk girls, oh my gosh, I wonder what happened to them. They had like a CV and they all had diabetes. And, you know, I'm trying to think I didn't have any role models with diabetes. I didn't have anyone to look up to did what I did, who had diabetes, you know, like if they'll if they did it, and it was no problem for them. So that's kind of cool. I don't know that I fancy myself a role model, but I hope I can be. You are definitely Yeah.

 

Stacey Simms  49:37

I have. I have a I have a Facebook question for you. So Trish writes on Facebook, my high school theater major loves her meeting you Maddie and she wants to know if you have an education program for rising stars. I mean is there is there no, you went to college for this, but there is

 

Maddy Trumble  50:00

Do you mean at a college level?

 

Stacey Simms  50:01

I would think either a college level a summer program, you know, something that you recommend to kids get on the track.

 

Maddy Trumble  50:08

Oh, gosh. There's so many musical theater apartments now, so many more than one. I feel like there's new ones popping up all the time. I University mission was great. It's the faculty is kind of all changed now. And I'm not quite sure exactly how the department's being run. Oh, my gosh, there's so many I would say. And there's so many that we think we need to go to like, I thought I needed to go to Michigan. And obviously, I went there for a reason. But the I know people who go to smaller schools and who love them, and people who go to big universities and love them, I think it's about like doing all the research. Also, it's probably so easy. Now with that there's probably so many resources on the internet. I'd say do the research and visit if you can and see which works best for you kind of think it's like training programs like it's like classes. I have a friend who has a business who, oh, gosh, this is terrible that I can't remember it. I'll post it on the Facebook groups. He has a business where he takes him and he takes other like, Broadway folks with him and Broadway stars. And they'll go and travel to schools and high schools. And I know there's a couple organizations that do this. And they'll teach classes, and they'll perform for you guys. I did it one time, I went to a little teeny tiny, tiny town in Texas. They were doing Mary Poppins and I taught a master class. I think it's called straight out of New York, this is the worst answer ever. You're gonna have to add up just send it to me too. I haven't taken a class and so long, I probably should maybe it would be better my ambitions if I took a class. But yeah, you know, I wouldn't even know where to tell someone where to start. Gosh, I will think about that. And I will get back to that person on the Facebook page. That would be great.

 

Stacey Simms  52:05

How funny. There was also a question about, you must have a pretty crazy schedule, even when you're just auditioning, you know, you don't have a regular nine to five. So the question of how do you manage diabetes? Do you have a routine or a special diet or you know, anything that helps you out?

 

Maddy Trumble  52:22

The short answer is no. Which I'm constantly trying to be better and trying to. To find that routine. But yeah, it's tricky because every day is different. Some days I so I work at a gym, essentially. And we asked exam classes with somebody that has to be there at 530 in the morning. But then other days I like today I slept in and tomorrow I'll sleep in. And then the next day, I wake up at four in the morning. And so everyday is so different. Yeah, it's tricky. And I kind of I just test a lot, which is why I should get the Dexcom I test a lot and I try to keep up with everything. Yeah, there's it's tough when there's no routine. And as far as diet goes, I try my hardest to kind of I'm also vegetarian, which doesn't really have any effect on diabetes, but but I feel like I maybe eat more carbs than the average person because I joined me. So I'm I try to I'm pretty good at counting carbs. I will say got that going for me. I do a lot a lot of carb counting a lot of like, bolus wizarding on my pump to take out my guesswork, because my guess is pretty bad. But yeah, it's a constant, constant. struggle. I still get surprised by highs more often than I'd like. I'm not low often, which is good, I guess. Yeah, I always have larb always has me always have fruit with me too. In case I need it and but yeah, no, I there's a lot of growth to be done. And yeah. I'm glad to see my other eyes on the doctors equity because I guess they need their help.

 

Stacey Simms  54:13

Well, listen, I always think it's interesting when I talk to people like you because I kind of hear you almost like apologizing that you're not like a perfect role model. It's so funny. But you know, that's what this life is all about. I mean, there are people who are absolutely amazing. And you know, they have it they seem to have it down. But I like talking to people, too, who are very realistic and understand. I mean, this is not a game of perfect

 

Maddy Trumble  54:39

Yeah, no, it's not and I think goodness, but I ya know, I apologize all the time, but I always feel guilty about it, which I need to get over that part about it because it's hard for everyone. Even my girlfriend with a Dexcom the other day she was like, I was like 300 the other day and I don't know why that made me feel better about it. But I was She's super high and she has a desktop. So yeah, if and I had a girlfriend actually, who did wicked with me who also was a diabetic, which was fine. I never worked with him before. She didn't have a problem. She had a Dexcom. And she was had such unbelievable control. She's the most like, regimented, disciplined person I've ever met. And so for her a high would be like, if she was like, in the 200. She'd be like, Oh, my God, you know, that would be a big deal for her. She really made me feel like I felt like I was constantly apologizing to her. She made me feel like the worst diabetic. Not intentionally, I did that myself. But he was really great at taking care of herself. And she ate like paleo, and she counted every car and every gram of protein and calorie and pretty incredible to watch her take care of herself. She was really good at it. Definitely an inspiration. Yeah. I will never ever be like that, even if I tried my hardest just because I don't have that personality. But it was something to aspire to. Yeah, interesting. Well,

 

Stacey Simms  56:06

it doesn't sound like you're doing half bad. I mean, I know you're not working as much as you'd like to. But it's been fantastic talking to you and learning about this life. That's very cool. So keep us posted. I might see I didn't even ask you for theater tickets or anything. I was very good.

 

Maddy Trumble  56:23

I wish I can give you some I want some to

 

Stacey Simms  56:27

Oh, I know what I forgot to say. So I just wanna let you know. Yeah. So the reason I wanted to talk to you was over the summer, Newsies came through Charlotte, and where we live. And so we all went to see it. And my son who has type one, we were watching it. And if you haven't seen it before, it's a very intensive dance show. I mean, the choreography is amazing. It's dance and gymnastics. And it's incredible. And he said to me, I wonder how somebody with type 1 diabetes would perform in a show like that? Not could they but can just how would they do it? And so that's when I went on the search to try to find somebody who'd fit on Broadway. And so how fun to find you. And you'd been in doozies. And you guys had like a kind of a mini reunion of some of the cast members right in to do like a one night performance in New York.

 

Maddy Trumble  57:12

Yeah, we just did a little like reunion concert with him last year. I think we're gonna think it's gonna be an annual thing. Yeah, some of the original, not just original, any movies? Yeah, we got together and we sing some songs that I sang with. Cara, who I did the show with. And then we did wicked together too. So we sang the song from wicked, which is kind of fun. Because it's so rare that you get to work with someone twice in this business. So yeah, it was super fun and fun to get to see all our friends again and sing songs from the show. Yeah, that's great. And we're gonna do that next year, probably sometime in the summer. So yeah. All right.

 

Stacey Simms  57:53

Very cool. Well, thank you so much for joining me. It was great to talk with you. Yeah,

 

Maddy Trumble  57:58

thanks. Thank you so much. Great.

 

Announcer  58:05

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  58:11

I will link up lots of videos you can see Maddie perform, and that'll be at Diabetes. connections.com. On the episode homepage, I really, really miss shows. I mean, obviously, I'm

 

Unknown Speaker  58:22

not a performer. I

 

Stacey Simms  58:23

was a wannabe performer when I was a kid. You know, I wanted to be an actress. That changed once I realized how much talent you did need to. But I love Love, love musicals and shows and I almost this year, I seriously considered starting a second podcast all about Broadway shows. And I may still do that someday. I mean, who knows? Never say never. But we'll see. I just I miss it so much. I can't wait to go back and see people performing. There's nothing like live theater. All right. Thank you, as always to my editor john Buchanan from audio editing solutions. Thank you so much for listening our regular episodes every Tuesday, classic episodes every Thursday. So we'll see you back here in just a couple of days. Until then, be kind to yourself.

 

Unknown Speaker  59:12

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged.

 

Mar 16, 2021

How do you treat lows? We're not just talking about candy vs juice. Treating lows also means managing expectations, considering mental health and even addressing other people's reactions. The authors of the new children's book "When I Go Low" join us for a great discussion about what can be a frightening issue for kids and adults who use insulin.

Mike Lawson and Ginger Vieira both live with type 1. They explain the thinking behind the book and talk about their own experiences with low blood sugar. Stacey shares her experience as a parent of a young child with type 1 who couldn't articulate when he felt low.

In Tell me something good, I checked in with the folks from Children with Diabetes Friends for Life.  And I have some fun, professional news about Benny.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

 

Check out Stacey's book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

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Episode Transcription:

 

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:28

This week I'm talking to the authors of the new book When I go low, Mike Lawson and Ginger Vieira have lived with type one each for a long time and they have their favorites when it comes to treating lows.

Ginger Vieira  0:41

Gummy lifesavers, I really like because they don't freeze and they don't rot. So I put them in the car. Each gummy lifesaver has four grams of carbs, I think Skittles do freeze. It's very hard to chew frozen Skittle but they also have one gram of carb. You gotta keep stuff in your car.

 

Stacey Simms  0:56

your car frozen up north down here in the south. We worry more about stuff melting this time of year, Ginger and Mike and I go in depth on lows treating managing mental health around them. And how those of us without diabetes might better support our loved ones during and after lows

In Tell me something good. You all wanted to report good news at medical checkups. So we'll talk about that vaccine rollouts. And I have some fun, professional news about Benny, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. I am always so glad to have you here. We aim to educate and inspire about diabetes with an emphasis on people who use insulin. My son Benny was diagnosed right before he turned two more than 14 years ago. My husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting. And that is how you get the podcast.

I love talking about children's books. And not just because my kids are old now. And all the children's books are put away in a closet. But it's such a wonderful, wonderful tool when you're teaching not just about diabetes, but about so many things. And of course, when Benny was diagnosed, he was so young. You know, he was 23 months old. We were reading tons and tons of picture books anyway. And one of the first things I did was look around to try to find something and short there were some terrific diabetes books for kids back then our favorite was one called Jackie's got game. I don't know if that's in print anymore. But there just weren't a lot of books. And now Gosh, I feel like every other week a new picture book for little kids with type one is coming out. And that is fantastic.

You know what we need more of? And Mike and Ginger, maybe you can get on this. I think we need more books for middle schoolers, older elementary school kids, even high school kids that aren't so much about type one, but have a protagonist with type one. And it's just there. There are a couple of books like that we've talked with the author KJ Howe wrote a book I'll link that up. Kurt Anderson has a book as well. I'll put those in the show notes. But they're for adults, and I wouldn't in good conscience have a middle schooler read some of the stuff that's going on in those stories. So I would love to see that. So get on that guys, right? Not like you have anything else to do.

But this episode is gonna be about more than books. Ginger and Mike are longtime advocates and hearing them talk about low blood sugars was really eye opening to me, I learned an awful lot even after all of these years. I think adults with type one are going to really enjoy hearing them talk about their experiences. And parents, we cannot learn enough about listening to our children to adults with type one about what they need from us and want from us and how we can help support them. And even though Benny is more independent every single day, I still need to learn a lot about backing off helping and supporting and not smothering. So this was a really good discussion for that.

Okay, we'll get to Ginger and Mike in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen. And this is exactly what we're talking about today. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke Hypopen comes in. Gvoke is the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it you pull off the red cap and push the yellow and onto beer skin and hold it for five seconds. That's it, find out more go to Diabetes, Connections comm and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon dot com slash risk.

 

My guests this week are Ginger Vieira and Mike Lawson Ginger  has lived with type 1 diabetes and celiac since 1999. She was diagnosed with fibromyalgia in 2014. She is the author of five books. We have talked I heard before on the show about some of those books, especially pregnancy with type 1 diabetes. I will link up tons of information about Ginger and those other books so you can check them out. She has two little girls, they did a read along on YouTube. But with this book, I will link that up as well. You've probably seen Ginger jumping rope on Facebook or Instagram. She is very active. She's I mean, she's certified in coaching, personal training and yoga. Mike Lawson was Misdiagnosed with Type two when he was 20. It took more than a year for him to get the right diagnosis. He had previously worked with diabetes hands Foundation, that's where I first met him years ago, he now works for a theatre production company in San Francisco and with the insulin for all movement, and Mike is the author of another book called Open up your bag. We've talked him on the show about that as well. I'll link up all of his stuff. And I will also include diabetes doodles, which Mike talks about here, Ginger, and Mike, thank you so much for joining me this book is I was gonna say just adorable. But it's so much more than that. And I can't wait to talk about it. Thanks for being here.

 

Ginger Vieira  6:02

Thanks for having us.

 

Mike Lawson  6:03

Yeah, nice to see you.

 

Stacey Simms  6:05

A little bit later on. I want to talk more about the substance here. It's always so helpful to get insight into how things feel so I can help my son more. But let's start and Ginger, I’ll ask you, how did you all come up with the idea for this book?

 

Ginger Vieira  6:20

You know, it came together with a few things that just kind of were wonderful coincidences, Mike had just illustrated and wrote the book, open up your bag, which is on the shelf behind him in the video. And at the same time, on the other side of the country, I was reading children's books to my kids who don't have type one, thinking about the time when I've had lunch with a bunch of kindergarteners who had type one, and how incredible it is that at that age, they have to count carbs and take insulin and prick their fingers and have all these gadgets in their body. You know, I'm 35. And I can't stand wearing a CGM anymore. It's like, and to be that little and deal with the burdens that come with this. And then I know as a mother, right, like trying to get my three year old potty train or even when they are potty trained, being like, do you need to go to the bathroom? They're like, no. And then 10 minutes later, they're like rushing to the bathroom because they can't you know, and to listen to your body is a skill that you build and detecting the symptoms of a low is a skill and a degree of self awareness. That is a lot to ask of a little kid. Yeah, that's a long answer to question.

 

Stacey Simms  7:31

No, it's a great one. I do have follow up, though. You were having lunch with kindergarteners with type one?

 

Ginger Vieira  7:36

This is a long time ago. But it really stuck with me that I was invited to meet a bunch of the kids in the town where I grew up who have type one. And low blood sugars are terrifying. And so it's I'm even more aware of what I witnessed now that I have little children. I have a three and a six year old. And to imagine them having to do what I watched these five year olds doing. I was diagnosed with 13. Right and it sucks at any age. And like you came on and talk to us a while ago about open up your bag about that book

 

Stacey Simms  8:04

that ginger, which is great. I don't know if you were surprised. I was not because the you know, the the diabetes community of parents that need something like that is so responsive when there is something good. It seems like you're a little bit overwhelmed by the response that you got to that. Can you talk a little bit before we talk about this book about what's happened since

 

Mike Lawson  8:21

well, open up your bag did get some great kind of following from folks who pretty much the general sort of comment that I received was like, we just needed something there just wasn't enough, maybe there are a couple of their books, and they're all every kind of type one book that I've read is great. So I'm not here to kind of knock any of the other stuff that's out there. But there's just not enough, especially if you're kind of breeding it every night before bed, like it'd be nice to have a second title to read and open up your bag. And when I go low, both of them are just kind of their happy books with Ginger just said kind of sounds a little bit scary. Like kids can't recognize these symptoms and stuff like that kind of is a scary topic. But the book that Ginger wrote really does it in a very light hearted way. Let's kind of just talk about the symptoms. And let's talk about how we're going to kind of treat them and it's not scary, it's happy and jovial and it's fun and open up your bag as well as kind of like, let's just kind of collect our diabetes supplies and kind of make a little singsong about them. That's kind of been the general reception, and it's been great.

 

Stacey Simms  9:28

So let's back up and talk about your experiences you both live with type one. It's been a while it may surprise some people I doubt it because we have a really well educated and fabulous audience. But it may surprise some people to hear that they still have low blood sugars, like, still? And  I say that with humor, right? We're not judging. This is not something that goes away. Mike is showing his little supplies nearby. But I'm curious if there was as you were writing this book and ginger, let's start with you, as you were writing this, what about your own personal experiences that kind of been formed, what went into it?

 

Ginger Vieira  10:01

I mean, a big part of what so there's several characters in the book and everybody except mom, cat has type 1 diabetes, and they all are sharing different symptoms that they feel when they're low. And that really for me, I, you know, I know that when I'm low and I'm on a treadmill, one of the first symptoms I feel is that the front of my eyes going numb, versus when I'm in bed, and I'm waking up in the middle of the night, and I'm low. The first symptom I feel is that I wake up and I like, Why the heck am I awake at 3am? You know, and it's not till I sit up there, I'm like, whoa, I'm low. And so, you know, I figured that out when I was like, 22. So to ask for little children to like, be that self aware is, it's an idea that we're really trying to offer them because the same way that you can encourage a little girl to know that she's smart and beautiful, is through the messaging you send, right. So we're trying to help send the message that you do have the ability to feel your lows coming on and send them you know,

 

Stacey Simms  11:03

let's let's kind of deviate from the book and kind of go further into that, because I feel like, again, and I have had occasional low blood sugars. I mean, once a year, basically, and I've shared this on the podcast, just recently, I had a low while I was taping the podcast, I went down and measured my blood sugar was 46. So it was a real low, but I'm fine. And it happens so infrequently. But I got it. I mean, I'm fine. Ginger made a mom face. But you know, I have talked to my doctor about it, I have to eat well, and be smart, you know, but things are gonna happen. And I'm not always smart. And that's okay, that's being a human being. So I just have to be prepared. But it did give me some incredible insight into just how to me how scary it was to be low, and how disorienting. And the example I gave was, there were two things that happened. One was I really wanted juice, but my husband was hanging around and he was like, What do you want to drink? And I said milk, and I hate milk. And I drank a glass of milk. It was like, and he didn't question me and I sit him later, he said, My mouth said what my brain was not thinking it was very strange. And then for the next hour, I was so hungry. I was just really, really hungry. And Benny, of course was I told you know, you believe me. So to me, it wasn't frightening because it was well controlled. I was here it was not a big deal. But it was very eye opening. So I say all that to and Mike, let me start with you, would you mind just kind of sharing what it feels like for you. And I know it's not the same all the time. But what is a low blood sugar kind of like for you.

 

Mike Lawson  12:30

It's funny, you use the word disorienting. And that's what I would use as well. Especially recently, I've noticed a lot of my lows are kind of I'm My mouth is getting detached from my brain. And I'll be kind of, you know, a few minutes into a story about I don't know, some documentary I watched and like, why am I telling this story right now. Like, I'm just kind of rambling off details and like, my thoughts aren't necessarily connecting with kind of a point. So I kind of get rambley in gingers in the book pointed out mad. And it wasn't really until I read this picture book that I started kind of analyzing that. And I do get a little bit angry a little bit sassier. And my tongue gets a little bit sharper. So that's something that I'm noticing and trying to kind of communicate with the loved ones around me to sort of say like, Hey, this is a symptom and not necessarily to explain it away Why I can be a jerk. But to kind of like say like, Hey, if you're kind of noticing this, and you know, we haven't eaten in a while, or we just got back from a hike. Like, that could be why and let's figure out what I need to do after that. So I feel like angry and angry is a new one that I'm learning to sort of analyze, but disassociated and kind of dizzy and rambley. Am I low right now?

 

Stacey Simms  13:46

(laughs) or is that just being part of a podcast? A little rambling? Has it is, as you said, you're sort of recognizing that a little bit more now. But Has anything changed for you over the years of being diagnosed is significantly in terms of how you experience lows?

Right back to Mike answering that question in just a moment. But first Diabetes Connections is brought to you by Dario health. And one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of strips, do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all that and more. No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels. Find out more go to my daario.com forward slash Diabetes Connections. Find out more go to my dario.com forward slash diabetes dash connections. Now back to Mike talking about what has kind of changed for him over the years when it comes to lows

 

Mike Lawson 15:03

What's changed for me is I've learned to sort of treat them and not ignore them. And I don't think that this is uncommon. I had this problem where I know a low is happening, I could feel it and sort of in my head, I'm like, well, maybe this one will rebound on its own or will take care of itself. And I'll kind of just sit and wait until it's like an emergency. And that usually then leads to me eating anything I can get my hands on which then we you know, like, it's a cycle of kind of. So I've been trying to learn, like, if you feel that symptom, like let's take care of it right now. And that's made them a little less drastic and easier to recover from

 

 

Ginger Vieira  15:44

I mean, a couple things came to mind when you asked that. One is that I actually I think being a parent has made my lows feel more like an emergency, you know, because it's like, there's nothing less fun than being a playground and being 45, 45 blood sugar. like being in the middle of Costco with both my kids and then having a really bad low because of a miss time or miss guess, and insulin like that. It's just miserable. So I feel like I'm on much more alert for oncoming lows, because I hate having them as a parent. So I've also lately if I wake up a little bit low, like even 50, 55, I will let dawn phenomenon correct my low, because I usually need a unit of insulin as soon as I wake up to prevent me from rising 100 points. So if I wake up low, I've actually experimented with seeing if dawn phenomenon will fix it, and it does. And then I still end up needing a unit of insulin eventually to prevent a further rise. But it's been an interesting, obviously, I'm not like sweating and shaking with that kind of low. It's like a very steady just sitting, you know, at 55 or something.

 

Stacey Simms  17:06

Right? That's something you have to be a bit experienced to have a backup plan.

 

Ginger Vieira  17:10

And I'm not getting in the car, you know, it's like, right,

 

Stacey Simms  17:13

but we've done that over the years. Yeah, I mean, you know, once you're a while in I think most people, I don't want to say experiment on themselves. But that's kind of what it is. And we've done that, you know, we've kind of let it ride and I'm right here. But let's learn. What do you think you would like you know, spouse's parents, other people around the person with diabetes who get diabetes as much as we can. But what do you want us to know about low blood sugars?

 

Ginger Vieira  17:38

Even after it's come back up to a normal level you feel terrible for I mean, you mentioned feeling hungry for an hour, you feel terrible for a few hours. Other it's like a headache, or you're just exhausted or like, I'm just constantly wanting to eat everything in sight, even though your blood sugar's now 120.

 

Mike Lawson  17:56

I think that's a good one. I also would want to communicate kind of like the urgency that I feel, I don't act like myself for a few minutes, because I'm kind of focused on just one thing. And that's bringing this number up. And not that that excuses me, like I said before, to be a jerk to everyone around me. But it's sort of like, get out of the way for a minute. But don't talk to me about why I'm low. Like that can happen later. Like, right now I need to just fix this. And that's all I can really think about.

 

Stacey Simms  18:25

That's interesting, because I do think that many times I have said, while we're treating, like what happened. Let's analyze the situation and learn from this right?

 

Ginger Vieira  18:35

I'll tell you what happened. my pancreas screwed me over. And that's all we need to talk about on that subject ever again. Yeah.

 

Mike Lawson  18:44

It really is just one extra drop, you know, like, can send you over.

 

Ginger Vieira  18:48

It's so easy to go low. That's such a great point. Like I hate when doctors are like, Oh, you had a low blood sugar. Because Mike is heard me talk so much about apples. But I eat an apple once a day, pretty much almost every day. And they're all different sizes. And if you get honey crisp one day or Fuji the other day, they're different sweetnesses to the little book that you got in 1994 that said, All apples are 15 grams of carbs is lying to you. And it's so easy to take one unit more than you thought you needed for a meal.

 

Stacey Simms  19:20

We learned that very early on with bananas. Right? Because they're different sizes and ripeness.

 

Ginger Vieira  19:25

Yeah, that’s a whole other thing, right?  you cannot estimate that accurately.

 

Stacey Simms  19:30

I used to try to really figure out I read and I'm so sorry. I read this very early on. A parent said something somewhere that there is never not a reason. You know, you can always figure out what happened. And that's probably true. If you're like a molecular biologist or you know something you know you have

 

Ginger Vieira  19:48

you might be able to always figure out what caused it but that doesn't mean you can control or prevent it.

 

Stacey Simms  19:54

Exactly. And to my mind, it just seemed like a complete waste of time to spend the energy. The little Energy I had as a parent of toddlers to analyze how ripe was that banana. It was more like, okay, we know this could happen. So let's be prepared.

 

Ginger Vieira  20:09

Yeah. Take a picture of it. Wait till the next batch of bananas looks as Brown is the one you know, I'm

 

Stacey Simms  20:14

not even that good. I'm just like, I think it was this right now. Yeah.

 

Unknown Speaker  20:17

Yeah.

 

Stacey Simms  20:18

So what do you What's your go to for treating Lowe's. Mike, you showed us a bag of I think what was that jelly beans or something. But what's your go to

 

Mike Lawson 20:25

jellybeans are new for me. Ginger has helped me in so many ways, man, this is 100% kind of hearing her talk about lows. We've done you know a few different talks and stuff after this book. So I've been picking up a lot of tips from her. So I'm trying to sort of get something that's easy to dose. Because my low treats are not treats. It's not something that I should be kind of looking forward to or enjoying. It's something that I should sort of be able to easily count when I'm in that low brain moment. I also do like those pouches of applesauce a lot because those are, you know, 10 grams of carbs. And usually that's kind of just what I need. And then I kind of can sit on my hands for the rest of the time while my brain wants to eat anything else that can get its hands on. So apple juice and apple sauce packets. I don't get a big thing of juice and pour it out because I'm not good at counting when I'm low. something easy is important to me.

 

Ginger Vieira  21:16

Yeah, I would I echo that bottle of juice like the big bottle. No way. You can go up a whole bottle of juice if your blood sugar's 45. In a second. I personally tried to develop like some little rules for myself that I've put into books. That's what Mike is kind of talking about two I think and it's to prevent overtreating lows right and to treat a low in a way that helps it come up the fastest. So I like to use things like the jelly beans jelly if you get Jelly Belly brand. They're one gram of carb each so you know you can treat a mild low with like eight grams of carbs, gummy lifesavers, I really like because they don't freeze and they don't rot. So I keep them in the car. Each gummy lifesaver has four grams of carbs. I think Skittles do freeze. It's very hard to chew frozen Skittle, but they also have one gram of carbs. Because you're gonna keep stuff in your car.

 

Stacey Simms  22:10

And we're in the south, so we can't keep stuff that'll melt. We can't keep candy in the car.

Yeah, it was funny. I was trying to think of frozen Skittles, what you were talking about that I realized that most?

 

Ginger Vieira  22:16

Yeah, yeah, that's keeping stuff in the car. And I walked my dog a lot. So I wouldn't be able to treat like not that I would have four loaves in the dog walk, but I want to be able to go a week and not worry about resupplying the low food. And so those little things that pet that like jelly beans, you can carry 100 jelly beans so easily in your pocket. Vinny has changed a lot over the years. He's always and still does use those 15 carb juice boxes. Because it's easy. It's a little bit overtreating, sometimes, but not by a lot. And it's not the drinking down the whole thing.

 

Stacey Simms  22:48

I don't care as long as he's treating, and he's comfortable that that's fine. But when he started driving, when he got his permit, we started talking about things to leave in the car. And we discussed it for about three seconds, because I had a bunch of suggestions that I didn't actually get to, because he said it's just gonna be tabs, just give me tabs. I was like you've hated glucose tabs, you've never He's like, it's perfect. They won't melt, they won't freeze. I can always get to them, like just buy me a big honkin thing and we'll stick it in the glove compartment. Yeah, and he's had to treat a couple times, and it's been perfect. So all of my great suggestions went to the curb. Well, you

 

Ginger Vieira  23:19

know, like, and there's such personal I had a really bad stomach virus, stomach bug when I was pregnant, and I regurgitated glucose tabs. Alright, so I've never touched one since then I really never will. And like, I joke that I would sooner die than have to eat a banana to treat a low because I hate bananas. I hate to write, but there's like certain things that you just don't work for you personally, you know, and you have to figure that out.

 

Stacey Simms  23:47

Yeah. And you know, circumstances change and walking the dog driving the car, that kind of stuff. When you decide to write a book like this. I mean, both of you have written other books. Ginger, I know you've actually talked about how rewarding it has been, you know, to share this kind of information. Where do you start when you're thinking about kids? I just looking at it, I noticed a couple of things. And I don't want to like say too much. But I will say all the kids are not kids. They're animals. Right? Is that a drawing Quirk? Is that a choice you made? Is it something you want the kids to be able to see themselves no matter what they look like? I'm curious like how you came up with that?

 

Mike Lawson  24:24

Yeah, I think I love children's books. I've always loved them. I'm kind of loved them for maybe a little too long. Even at a break into my later childhood. I was still checking out kids books and trying to redraw them. I was a big fan of if you give a mouse a cookie, and I would draw like fanfiction, where it kind of like extended the story. I just was really into it. And almost all of my favorites were the characters were animals. They weren't children. And so I kind of just thought that's how you do a kid's book. But if you do think about it, like you take a look at this book when I go low, and all of the characters are kind of relatable to you, because none of them are just a little boy or a little girl with blond hair, or, you know what I mean, they they're kind of everything. So you could kind of take a look at the group of birds and identify in that you could take a look at the pig and say, like, sometimes I'm a little piggy, you know, like, you've kind of relate to all of the characters at different times. So I like that a lot. And I think what's funny is when Ginger wrote this, she sent it to me, and we kind of had her initial conversations, and they were all animals when she wrote it. It wasn't like a conversation where I had to convince her that that was a good idea. She didn't. She knew it was

 

Ginger Vieira  25:37

they were all underwater animals, because I was at first illustrate it myself. And thank goodness, I found that Mike was ready for a project because he did 100,000 times better.

 

Stacey Simms  25:49

Are there things that we should be looking out for in the backgrounds are those streets that are familiar to either one of you, I don't want to give too much away. But I was curious.

 

Mike Lawson 26:00

Yeah, so the background photos are just kind of stuff that's around me here in Oakland and San Francisco, there's a few stock images as well. But you'll notice there's bushrod Park, which is just down the street from me mosswood Park is around the other corner. So they're kind of just like photos from out and about.

 

Ginger Vieira  26:19

So if you want to stalk Mike, then you've just been given like four tips on how to find him. So one thing that it's really not just a message about lows, we've really tried to incorporate a few messages for kids throughout the book where, obviously there's a lot of talking about lows, but there's also one that they're not the only one in town with type 1 diabetes. I've been at counselor at diabetes camp for in the winter, as a little weekend camp for teenagers for years. And you can just see like, the minute they walk in the room is like, oh, everybody here is just like me, taking a shot at lunch is no big deal anymore. And that that burden becomes so much lighter. So finding I've really any parent that's listening, like please send your kid out to diabetes camp, no matter how much they say, I absolutely do not want to go it will help them in more ways than like you can measure. And also several points in the book with between characters, they talk about how brave they have to be to deal with type one. And one thing that I hate to witness online is when a parent is talking about their child's type one with pity, you know, feeling bad for the kid because I think there's nothing more poisonous to confidence and courage and perseverance than pity. And instead of you know, you still want to acknowledge how hard it is. We're not you don't want to dismiss how hard it is. But instead of pity instill them with this sense of like, look what I deal with every day. I'm awesome. You know, this, like sense of confidence and impressiveness, you know, and so there's that message as well, like you are really brave for dealing with this every day.

 

Stacey Simms  27:58

All right, I hate this question as an author, but I'm going to ask you guys anyway, because it's always fun. So books been out since January? What kind of reaction Have you received? Has it been different from your other books? And now I can ask you both of this, you know, but I can ask you both this question. Mike, you're nodding, was it different from open up your bag?

 

Mike Lawson  28:15

Very similar, the receptions? Great, you know, seeing parents and children holding the book and talking about conversations that they've had thanks to the book is great. We've heard from a couple of parents that they appreciated the conversation that was created because it wasn't based around fear. It was sort of just a nice conversation about something that's very serious, but the conversation didn't have to be serious and scary. So that's great to see. Seeing people holding the book and kind of using it as a tool with their children has been very rewarding. Ginger, I'm sure it's a little different than some of your other books.

 

Ginger Vieira  28:52

Oh, Mike did we did get the question of like, how could a cat and mouse possibly exist as friends in the same universe?

 

Mike Lawson  29:02

Our harshest critic, and she was four.

 

Stacey Simms  29:05

excuse me. Yeah, that's awesome.

 

Ginger Vieira  29:09

We're trying to forge new communities, you know. I mean, I think with any book, it's, it's the same feeling of like, it doesn't matter if it's, I know, it's always rewarding because you get that, that this affected me in a positive way. And it made living with type 1 diabetes a little easier today or this week, or ever. It doesn't matter what it is. It's, it's worth it.

 

Stacey Simms  29:35

One of the unfortunate trends I've noticed really just in the last five to eight years, among parents is Listen, you always want to respect lows, right? You don't want to ignore them. You want to treat you want to learn about them. But there seems to be I don't know if it's a CGM thing or a social media thing. I see more and more parents who are afraid to let their children do things away from the house, sports, all that stuff because Cause of low blood sugar. Are you kind of hoping that even though this is a book aimed at the kids, that the parents might kind of understand a little bit more about a Ginger you're making, you're kind of making me nervous with your face there.

 

Ginger Vieira  30:11

I mean, I just technology’s… I feel like CGM has really changed how people, parent children with type one. And it's become much in some ways I've witnessed online. There's this like ultra-micromanagement of trying to get this flatline on the CGM and, like ultra-micromanaging their diet to the point that I think there's a whole new batch of kids that are going to be struggling with a, I never had anybody micromanage my diet as a 13 year old with type one. And I still had to like work through my relationship with food in my early 20s, because of diabetes. And so now you have like five year olds that are being put on ketogenic diets, and it's like, this isn't going to like succeed long term, I don't care how willing they look like they're into it right now. It's going to miss shape their relationship with food, and it's not necessary in order to thrive with type one. So yeah, I think cgms have, obviously they've provided this ultra safety, but it also provides like this ultra level of fear, I

 

Stacey Simms  31:14

think, I just feel like we need to find better ways to use the technology to thrive and let our kids you know, thrive with it.

 

Mike Lawson  31:21

The book is called when I go low, not if I go low, like we know you're gonna go low, it's if you're doing insulin it's gonna happen and kind of being afraid of them. And acting like that's a failure to go low is going to kind of set you up for some really heavy shame and kind of feelings that you don't necessarily need to have. I don't know, it's a complicated story. And I understand why you might fear lows, but personally, my fear of low blood sugar has actually led to my highest day one sees because then I'm under treating and or, you know, under injecting insulin and sort of like living high, which isn't good for me either. So you kind of have to figure out how to walk as close to the line as possible. And sometimes you're gonna dip below the line, and sometimes you're gonna be above the line. That's the game.

 

Ginger Vieira  32:08

And there's so much pressure these days to get an agency that's like in the low five than the high fours because of ketogenic diets. And now an agency of 6.1 is like, Oh, that's no good. And I see it in parenting communities. And I feel really bad for the kids were like, you can live an extremely long, very healthy complication, free life with an A1C in the sixes. This is not, you know, like, you don't need to put your kid through taking away joys of being a kid. Yeah, to get anyone see. That's

 

Stacey Simms  32:40

crazy. It's complicated. And I really hope that books like this help, because it's the parent who's reading it, the kid can learn a lot. But sometimes the parent I know, for me, it's always helpful when I learned from people who actually live with type one.

 

Ginger Vieira  32:54

I do think like, as someone who's a parent, and someone who has type one, but my kids don't have it. I do think that type one is a lot scarier through a parent's eyes than it is living with it. It sucks living with it, I would give it up in a heartbeat, right? But I think there's the fear is bigger when it's coming through the parents eyes and the room for worry and pity. And I don't want my kids to have to deal with type one, even though I know Look, my life is fine, great, right? Like I'm alive doing it. But I still dread like if they were to ever develop type one.

 

Stacey Simms  33:30

Right? And not to minimize it because I 100% agree with what you're saying. But it's parenting is like that with everything right? Your kid gets the flu or is throwing up and you're like, I wish it were me. I feel so bad for them. You know, it's a totally different perspective than going out in the world. Like, I

 

Ginger Vieira  33:43

hope you don't get in some weird accident. I mean, is it like just learning to walk? I was like, Can I put helmets on these kids are? pediatricians like that's not necessary. But there are sharp and I'm not really a worrywart like that but like suddenly you just Yeah.

 

Stacey Simms  34:00

Alright, before we let you go silly question. Are any of the names in the book named after people or anything that you want to share? They're just names we love. Yeah,

 

Ginger Vieira  34:09

we're working on a second one. Who's Mike?

 

Unknown Speaker  34:13

Like, how much should we reveal?

 

Mike Lawson  34:15

You do it?

 

Stacey Simms  34:18

Is it the same topic?

 

Mike Lawson  34:19

No,

 

Ginger Vieira  34:20

not the same topic. It's called Ain’t Gonna Hide My T1D. That's all we're gonna tell. All right.

 

Mike Lawson 34:26

We do have a website, which is diabetes, doodles, calm, free, downloadable supplemental worksheets, some word searches and coloring pages that go with along with the book. You can also find links to by when I go low and open up your bag, their

 

Stacey Simms  34:41

web series, have you heard from siblings? I meant to ask that have you heard from siblings that read this, like,

 

Ginger Vieira  34:45

you know, we've heard from actually parents who have type one, a dad ordered it to read to his kids so they would understand his type one better. And I read it with my kids. We have a read aloud on my YouTube and they know I have type 1 diabetes and they Now I believe mommy alone is low. So it's definitely I think grandma's could benefit from it. I think my aunt could benefit from reading it, you know, she thinks, Oh, we've had it so long. You take such good care of it. It's easy for you, you know, it's like, Nope, I still go low, just like the cat.

 

Stacey Simms  35:19

Well, thank you both so much for coming on and talking about this. I loved hearing the stories behind it and getting better perspective and keep us posted when the next one's coming out. That's exciting. Thank you.

 

Ginger Vieira  35:29

Thanks for having us.

 

Announcer  35:35

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  35:41

More information about everything we talked about, just go to Diabetes connections.com, there's an episode transcription, you can go to the homepage and learn lots more, and order the book as well. And if you do, please leave them an Amazon review. I love the book, I left them a review, you can read it on the Amazon homepage.

I just think that especially for younger children, a book like this is so helpful, because you can't expect I didn't say this during the interview. But I'll say if you're reading this book doesn't mean that your child is going to recognize lows. Right? I think that's one thing that I get asked a lot, especially when it comes to toddlers and children, frankly, under the age of seven, six or seven, how can my child can't recognize lows or when can I expect that to happen? And every kid is different. And your endocrinologist may have more information for you about this. But I think it's unrealistic to expect a three year old or even a five year old or sometimes a seven year old to really understand recognize and articulate that they're having a low blood sugar unless you have a child who is a preschooler and says, Mom, I think I'm having an ear infection, or I have a headache, perhaps I have a sinus infection. Kids don't think like that. They don't talk like that. They don't know what's going on. They don't even have the tools to articulate.

My daughter is a great example. My daughter Lea doesn't have diabetes. And when she was little, she had a series of, she would get chronic ear infections for over a year and a half, we finally did ear tubes, and she had cleared everything up. But she used to get an ear infection and she would punch us she would just get angry. She wouldn't even say my ear hurts. Or she wouldn't point her ear and say my ear hurts. We just knew something was going on. This is between the ages of probably two and almost four, because she would be mad at us. And I think with lows with little kids, it could be the same thing. You can talk to them more about how to recognize it. And a tool like this could probably help speed up the process. But that's the only thing I would caution about and Mike and Ginger aren't making any claims like that. It's just a question that I get asked quite often.

All right, tell me something good in just a moment. But first, Diabetes Connections is brought to you by Dexcom. So I was watching a movie with my husband the other night with my husband Slade and I got a Dexcom alert. Benny was upstairs in his room. And for some reason, it just took me back to the days when we basically had blood sugar checks on a timer. Do you remember this? Some of you people who have been around for a while, we would check doing a finger stick the same times every day at home and at school. And of course, whatever extra we needed to. It's amazing to think about how much our diabetes management has changed with Dexcom share and follow. I didn't stop the movie to get up and check him. I knew what was going on. I mean, I could decide whether to text him I could decide whether I needed to go up and help out using the share and follow ups have really helped us talk less about diabetes, which I never thought would happen with a teenager. Trust me He loves that part too. That's what's so great about the Dexcom system. I think for the caregiver or the spouse or the friend You know, you can help the person with diabetes manage in the way that works for their individual situation. Internet connectivity is required to access Dexcom follow separate follow up required Learn more at Dexcom comm slash compatibility.

In tell me something good. This week, I popped into the friends for life Orlando Facebook group to gather some good news stories. And this is that big conference that goes on in July. They have not yet decided whether they will be virtual or in person come this July. But children with diabetes the group behind friends for life is putting on a virtual conference this coming weekend. It's their spring conference, I will link up more so you can find out register. It's always a terrific time. And I find these virtual conferences a really great way to just connect. I go and I listen to presentations. But more than that I kind of hang out in the hallways and talk to other parents and say hi to my friends. It's been wonderful. So ask them for some Tell me something good.

And Laura Bilodeau who is the organizer, the Grand Poobah of all the friends for life stuff said Sam her son and Grace are planning to move back home house hunting in Detroit in the time of the pandemic. Oh my goodness, getting married in September. Life goes on. That is wonderful, Laura, such good news. I'm excited for you and your whole family. More wedding news, Erin shared I got a great report at the retina specialist No need to return for nine months. The next time I go I will be a Mrs.

So that's fabulous. Both good news things right a wedding and a great eye report. I have a retina specialist appointment coming up. I don't have diabetes, but I've had some issues. And that is such a tough eye exam. And I know many of you, as you'll listen are saying, Stacey, get over yourself. We have to do that all the time. I know I do, too. But I hate it so much. I'm such a baby. So good on you, Erin. Thanks for sharing that inspiring us to be brave at our retina specialist appointments.

Wendy says my first in person endocrinologist appointment was yesterday or a Wednesday was excellent. But I'm sharing this because Wendy also says she's been working nonstop scheduling appointments for COVID vaccines in New Jersey and Wendy, I assume that is for other people. And you've been helping out. And that is such fantastic work. It's unbelievable how complex this can be for people who are, you know, not used to using computers or using apps to schedule appointments. And I think we've been kind of lucky in North Carolina, that it's pretty simple here. Once your category opens. There's a lot more complex systems and other states that I've heard. So Wendy, thank you for doing that.

Janice shared I have type two diabetes, but unrelated, I just had my 10 year check for thyroid cancer levels were undetectable. Always great to hear. Janice, thank you for sharing that. Lots of people also shared really great agencies and checkups. And I'm thrilled for all of you for that. And I hope you are just as happy in your lives with diabetes as you are with those numbers. You know how I feel I don't generally share numbers and tell me something good. But I really am happy for all of you. I know the hard work it takes to get there. Well, I know as well as a mom of a person with type one can know, right? I don't know the day in and day out work that you really are doing on an individual basis. So friends for life Orlando group, thank you for sharing all of your good news. I very much appreciate it. And I'll see many of you had the spring conference this weekend.

I also want to share a little bit of good news about Benny: he has a job. I know Isn't he two years old still? Benny is now 16. He got his driver's license, and he has been really itching to get a job. He's got some projects he would like to spend some money on. And he just is an industrious kid. And you know, I think most 16-year-olds are ready to work. I certainly was when I was his age, and his dad was too. So we've been encouraging him. It's been very difficult, of course with COVID to find something safe. We've been mostly talking about like summertime jobs, but it happened pretty quickly and we got pretty lucky. He got a job at a local grocery store chain, just as North Carolina opened up to vaccines for grocery store workers. So the timing worked out really well. We were able to get him his vaccine. He just got the first Pfizer shot because he is 16 you can only get the Pfizer shot and he will start training and we are off to the races. So I'm really excited. I'm happy for him.

I know that as soon as COVID is really over around here. I'm never gonna see that kid. I used to say as soon as he gets his driver's license, I'm never gonna see him again. Because he was busy before he could drive. I mean, obviously before the pandemic, but his junior year of high school is this fall and I think between sports that his job and social life Holy cow, it's gonna be busy around here who maybe he'll drop by for meals. If you ever tell me something good story. I would love to hear it. Please send them to me Stacey at Diabetes connections.com. Or you can always post in the Facebook group. I love to hear them.

 

Hey, before I let you go, Happy St. Patrick's Day. Now I know we're not Irish or even close to it. And I know St. Patrick's Day, this year is a different kind of celebration, like everything else because of COVID. But I bring it up because it's actually my first date-aversary Yes, I made that up with my husband Slade and I don't know if I've ever told the story before in the show. So I'll tell it now. Slade and I met at a TV station in upstate New York shout out to Utica, very small city in upstate New York between Syracuse and Albany. I was hired at WUTR. In December of 1993. I had been working here there and everywhere in radio in Westchester County, just grabbing some part time jobs where I could and then I got hired full time to do this TV job in Utica. And then a little bit more than six months later, I got a new job at WKTV, the other TV station in Utica, and my commute got five seconds shorter because it wasn't even across the street. These two two TV stations were on top of a big hill, and they were the only thing on top of the hill. So it was like parking lot building personal building. And I was hired away by WKTV to be their main anchor. And I could talk about that forever. It was such a fun time and really fun memories.

But that's how I met Slade and we met pretty much in the summer of 1994. We were friends you know just like you’re friends with the people that you work with. But fast forward to March of 1995. Slade and I were in the St. Patrick's Day parade in Utica, because I don't know if this even happens anymore, but local TV stations will often be in the parades right the anchors will be in the truck and waving and that's it That was me like a dummy and Slade was driving and I was like hello People who I do I wait, what do you do? I mean, you feel like an idiot, you're not a celebrity. You're a local news anchor. So the whole time we were joking about it, you know, not insulting the people, they didn't come to see us, they came to see the other things in the parade, but just laughing at the ridiculousness of the situation. And we had a lot of fun. And that was in the morning. And in Utica, as in many cities, the St. Patrick's Day festivities tend to go throughout the day. So we kept running into each other at the bars and the parties and this that the other thing, and then a group of people said, Let's meet up for dinner. So I went home, you know, took a nap, took a much needed shower, went out to dinner. And as it had happened during the day, the group was kind of getting smaller and smaller and smaller. And then the dinner group said, Let's go to Turning Stone casino, which is a gambling establishment about 30 minutes away from you to go. So a bunch of us went and that group was smaller than the dinner group, but it was still pretty sizable and Slade & I had a blast.

I love to play cards. That's another story. And I really enjoy casinos. And it's probably a good thing that when we moved to North Carolina 20 years ago, the only casino was like two and a half hours away in the mountains and is nothing special. I think they've improved it. But we've decided not to go maybe until we retire. Because we went to Turning Stone a lot. But I'm getting ahead of myself. So by the time that evening started to wind down there were three of us left me Slade and another guy who bless his heart, I think was kind of oblivious of the whole situation. And finally, Slade said to me, do you want me to give you a ride home? And I was like, yeah, I'm done. And we went out to breakfast, at one in the morning, and then he dropped me off at my apartment. And when he dropped me off, he asked me out on a real date. That date by the way was I think was a week or two later and we saw BB King in Syracuse and we went to the dinosaur BBQ for dinner beforehand. That was a great date. But my first real date with Slade, as I counted is St. Patrick's Day. So long story their long way of saying, gosh, we've been together a long time. I feel pretty lucky about that. Happy St. Patrick's Day, everybody.

 

All right, next week we're going to be talking about provention. Oh, this really is exciting. If you stick around till now I'm glad because provention. This is the company behind Teplizamub. Does that sound familiar? That's the drug that TrialNet and other studies have shown can prevent the onset of type 1 diabetes for up to three years. So far, I say up to but it's a three year study so far. So in this we're gonna go in depth who had worked for what it's all about. It's in front of the FDA right now. So this is a really interesting and exciting prevention treatment, not in mice, but then people will talk about that next week. In the meantime, of course, we'll have a classic episode in just a couple of days of please stick around for that. Thanks, as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days until then, be kind to yourself.

 

Benny  47:52

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Dec 15, 2020

The new big-budget disaster movie Greenland comes out on streaming this week. It starts Gerard Butler as the central character, trying to save his family including his son who lives with type 1. Award winning screenwriter Chris Sparling had never put diabetes into one of his movies, but he knows all about T1D. His wife is Kerri Sparling, writer of the very popular, and now archived, blog SixUntilMe.

Stacey & Chris talk about writing something personal into a movie and then handing over control to a different director and producer, as well as what it's like to try to make movies during COVID restrictions.

Check out Stacey's book: The World's Worst Diabetes Mom!

Kerri Sparling interviews Chris for Children with Diabetes 

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Episode Transcription (rough transcript, computer only - check back for proofed version)

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop, created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, there's a new movie all about a big global disaster and it features a main character with type one. award winning screenwriter Chris Sparling had never put diabetes into one of his movies. And he was a bit concerned about how it would all turn out.

 

Chris Sparling  0:41

I became so in a way overprotective of getting it right. And it being portrayed right because the last thing I wanted to do was to finally incorporate diabetes into a movie of mine and for it to end up being portrayed wrong.

 

Stacey Simms  0:55

Many of you already know Chris, sort of his wife Kerri Sparling wrote the very popular blog six until me for almost 15 years. We talk about diabetes in the movie and at home and about the entertainment business during this time of COVID

in innovations JDRF begins at home early T1D detection.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. I am so glad to have you here. I am your host Stacey Simms and we aim to educate and inspire about diabetes by sharing stories of connection. Something different This week, we're going to talk about Greenland. This is a movie it's releasing in the US on video on demand it stars Gerard Butler and Marina Bakkerin who you probably know from the Deadpool movies. I put the trailer in the Facebook group and Diabetes Connections of the group. But the basic plot is that these are estranged parents, maybe they'll get back together, but they are working on their marriage just as a world ending cosmic disaster happens. And wouldn't you know it, their son has type one diabetes, so diabetes, type one insulin, this all becomes a plot point.

Now we've talked about this a lot before so many films and TV shows have gotten diabetes exactly wrong. But Greenland has a big advantage. And that is as you heard in that opening tease, and that screenwriter Chris Sparling, whose wife lives with type one, we will get to Chris in just a moment.

But first Diabetes Connections is brought to you by one drop and getting diabetes supplies is a pain. Not only the ordering and the picking up but the arguing with insurance about over what they say you need and what you really need. Make it easy with one drop. They offer personalized test strip plans plus you get a Bluetooth a glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door no prescription or co pays required. One less thing to worry about not that surprising when you learn that the founder of one drop lips with type one, they get it one drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to Diabetes connections.com and click on the one drop logo.

My guest this week is an award-winning screenwriter. He is someone that I've never met, but I feel like I kind of know because for many years I and many of you read about him in Kerry Sparling’s blog SixUntilMe. Kerri spent more than 14 years writing about her life with type 1 diabetes which included meeting and marrying Chris, who has been featured in blog posts about kids and family and everything you would expect. Kerri has stepped back from the blog to pursue other projects in her own writing. And Chris has a big movie coming out this week as this episode airs, Greenland, which debuts on American streaming this week.

Chris, thank you so much for joining me. Welcome to the show.

 

Chris Sparling  3:53

Thank you. Thank you for having me.

 

Stacey Simms  3:55

It's great to have you. I feel it. As I said, I feel like I kind of know you. So I appreciate you kind of taking the leap and coming on not a movie or writing podcast, but a diabetes podcast. So this should be really fun. What made you decide I mean, you've been writing movies for an awfully long time. What made you decide to put diabetes?

 

Chris Sparling  4:14

You know, it's something I've been wanting to do for a while this movie presented a pretty unique opportunity for me to do it for a couple of reasons. One, the movie is the first of what's called Greenland. And it's about an incoming asteroid that's going to hit Earth or comet, it's going to hit Earth. It's this existential threat that everyone on earth faces. So kind of by nature of that alone, there's a ticking clock built into the movie, right? It's just when this thing's going to hit you're trying to get to the bunkers in Greenland. I tried to get there safely and survive.

And so on the macro level there is that that large ticking clock at play, but the movie itself is different than say, deep impact or Armageddon in that it operates more on a personal level than those two movies do. You know it's not a movie checking in with what the government's doing to try to up the asteroid or anything like that, it's really more like the movie, the impossible if anyone listening ever saw that it's a great movie. And it's all to do with seeing it through this one particular family's lens, how they're going to survive this, this Cataclysm. So built into that I wanted to have a more personal, it's a more personal story. And I'd like the idea of having a more personal ticking clock as well.

And so the son in the movie has type one. And now that's not to say the only reason why I gave him type one is to say, oh, that'd be a cool narrative device is to add yet another ticking clock. But it also quite honestly, it just, as I said, at the beginning of this long winded answer is that it gave me You know, I've been wanting to do it for a while, you know, Kerri and I have been together for a very long time. So I've seen type one up close and personal for a very long time. And, you know, I think it's kind of, it's somewhat misunderstood, if not even known condition by a lot of people. So it was, you know, I'm kind of hesitant to use the word educate, because I'm not really trying to do that, but maybe just shine a light on it a little bit. And, you know, this was a, an opportunity to do that on a, I guess, a large screen, or one of your house.

 

Stacey Simms  6:08

But I'm really curious, as you said, This isn't a movie where you're going to take time to actually do a formal education about type one, just as I wouldn't expect a formal education about a comment hitting the earth, and you know, what would happen, but you do have to explain these things. And I'm curious, you know, how do you work that in, you know, I assume we'll see things like injections or a pump or something like that. But was it difficult to kind of write it into the fabric of the story without, you know, Hey, everybody, we're gonna talk about diabetes.

 

Chris Sparling  6:34

Now, it was, to a certain extent, because, you know, as you will know, it's diabetes, you know, it's sometimes can fly a bit under the radar. You know, I recently, it was kind of bizarre to do it. But it's fun, I did it, I did an interview with Kerri. And so we were talking like you and I are talking now. And as I told her, then, and I don't always know when she's low, I don't always know when she's high, you know, things are beeping and everything else. And sometimes she takes on a certain characteristics, when that's going on. And I do know, or if I see you're sweeping a bunch of juice or whatever, but like, but sometimes I just don't know. And so to kind of to represent that on screen is difficult, because if you try to go too far in one direction, or the other, it may start to feel very false and forced, and almost cartoonish. And I say 100%, didn't want to do that. But if you go too subtle with it, which diabetes can sometimes be a rather subtle condition, you know, at times, and, you know, if you do that, then it just, it doesn't register for the audience at all.

So to kind of dramatize that, what I did was I had the boy, the young boy in the in the movie, let's take one, I gave him a pump. And, you know, to kind of develop a shorthand with the audience, right out of the gate, there's a scene early on in the movie, where Gerard Butler who started in the movie, he's seeing that basically, he's been away, he, his wife had marital problems, and he's kind of they're trying to work it out, he and his wife now and he's coming back, he hasn't seen his son in a little while. And you see, there's a nice tender scene between him and his son, where he notices the pump, the insulin pump, and he says, you know, you know, basically, there's something to the effect of I do like that better than the shots. And you know, just kind of getting it across to the audience, someone who may not be as familiar with it as you are.

Or I might be what's like, oh, okay, I get, you know, I can understand that you're certain things, I have a certain amount of knowledge about diabetes. So yeah, it's not, it's small things like that along the way, I've no doubt there will still be things that some people watching, it won't fully kind of hook on to, and they won't fully get. But at the same time, I think there might be elements of it that people watching might be like, Oh, I had no idea. I had no idea that having diabetes would require something like that. Or even to say, the immediacy and the importance of insulin, it kind of where I spoke earlier about this massive macro level existential threat that they're facing. But they still have to get to these bunkers in Greenland, if they're going to survive. And there becomes a situation where this boy get he needs his insulin, because he gets separated from it. And it's like, well, yeah, the large scale goal here remains, but if we don't get you there safely, and again, I mean, just maybe telling maybe to a certain degree, informing the audience who might not know that insulin is not just something like, again, you take it whenever you don't know, I don't know what some people might think, like, you just take it once in a while you take it as you feel like it or I don't know, whatever the misconception might be,

 

Stacey Simms  9:09

that we eat a cupcake, you need your insulin, right? (laughs)

 

Chris Sparling  9:12

Yeah, yeah. I think if nothing else, maybe it'll open, not open people's eyes. That's actually wrong, especially maybe just kind of illuminate the topic a bit for some people.

 

Stacey Simms  9:19

You know, again, I said at the beginning, I'll probably say a few times. I know very little about the industry, the movie industry and and what it takes to write a movie and produce and get, but I would imagine that and you've done projects before, where you've been involved in every step, right, you've written and then you've produced it, or you've been more involved. But with this, you you wrote it as my understanding, and what happens after you kind of hand off your baby because the director can change things, right. The actors have to change things. I guess I'll ask it both ways. First about the diabetes. Did they get it right the way you had hoped? And then we can talk about the movie?

 

Chris Sparling  9:53

Yeah, well, I mean, yeah, I mean, first, even before diabetes, yes, that always happens. I mean, I've directed movies, I produce movies, all of which have been ones that I've written. So, you know, in those instances, I have obviously quite a bit of control over what the final movies gonna look like in this instance, having just written it. In other movies I've only written, you know, there's always an understanding that when you hand it off, essentially, you know, your depends on the project, quite honestly. I mean, sometimes just as the screenwriter, I am still very much involved with the production because the director or the producer probably see the value of having the person conceived it but but with this, I was involved but not see, like, on a day to day level, that's for sure. Look for the diabetes of it all. You know, I was happy with it.

And I was, there were a couple days when I was on set. And, you know, there was I just happened to be there. One of the days they're shooting a scene in in the grocery store and use the sons, they're shopping with his dad, and he's like, Hey, can I get some juice in the dad's like, yeah, sure, go get some. And I remember talking to the directors like Rick, listen, he's like, I was like, you know, my wife generally doesn't drink juice for fun. I'm not I mean, again, I know. She perfectly well, I should be no problem. She could if she wanted to just you know, but I was just I became so in a way over protective of getting it right. And it being portrayed, right, because the last thing I wanted to do was to finally incorporate diabetes into a move your mind and for it to end up being portrayed wrong. But in talking with Rick, he was like, No, no, it's cool. You know, I guess he was, meanwhile, he had his friend on speed dial who was the parent of a child of type one. He's like, No, no, I talked to them. I've consulted with them over and over again. And they said they get no, they let their child have juice if they want it and everything else I was like, and like, on an intellectual level, it made perfect sense to me.

But I was I mean, I was kind of like waiting that we hold on a second rate bumps, you know, so to fully answer the question, I think the director, the producer was I think they did a really good job. I think people watching the movie and will it be 100%? Right? I don't know. I mean, people might see it and say, Hey, I don't know if I agree with that. Or not. But everyone's situation in their approach is different. But I could say if you kind of widen the aperture a bit and take a look at it, I think people are gonna I think it does it handles it accurately. For the most part.

 

Stacey Simms  12:02

I would have been like Gatorade zero, and then he can get a juice box for later.

 

Chris Sparling  12:08

Yeah, I mean, that's I'm saying like, everyone's situation is different. Right?

 

Stacey Simms  12:11

So let's talk about movies for a little bit. Was this your dream job? Was this something you always wanted to do?

 

Right back to Chris in just a moment. But first Diabetes Connections is brought to you by Dexcom. And you know, I've talked about this before, but it's still striking to me when Benny was a little, you know, you give your kid a bath almost every single day or he goes swimming all summer long. And I always noticed his fingertips, you know, they were poked so much, that they were full of these little holes up and they just looked really awful. Especially when they got wet. It was almost 16 I'm not looking at his hands very much anymore. But man, when we go to the endocrinologist and Dr. V looks at his fingertips, they are normal. We've been using the Dexcom for so long. Now it was seven years. And with every new iteration, we have done fewer and fewer finger sticks. The latest generation the Dexcom g six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about doing the 10 finger six a day we used to do chasing my toddler around, it makes me so glad that Dexcom has helped us come so far. It's an incredible tool. If your glucose alerts and readings from the G six do not match your symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. learn more, go to Diabetes connections.com and click on the Dexcom logo.

Now back to Chris and he's talking about whether this is still his dream job. Does he still love working in the movies?

 

Chris Sparling  13:38

Yeah, 100% I mean, I started like eons ago, I started as an actor. And I lived in Los Angeles for several years doing that. And while I liked that, and sure, it would have been great to have ultimately done that it just wasn't really it's a really, really tough racket, trying to be doing the struggling actor thing. You know, it's fine when you're really young doing it. But at a certain point, you just feel like, wow, I have like no agency, I've almost no control over my future. You know, it's just really, really tough. So I just kind of felt I needed a little more control over my career. And so yeah, so to be involved in this industry in any capacity was was always my goal.

 

Stacey Simms  14:16

How does it work these days? I mean, people will say, well, you can write from anywhere. But I've got to imagine that the whole industry, if not moving slower, shut down. I mean, 2020 it's been a mess for everybody. But from a filmmaking standpoint, how did this even get done? When was I guess we'll talk about Greenland, but in general, like, how are things getting made right now?

 

Chris Sparling  14:36

I mean, yeah, Greenland was all written, shot well before the pandemic, but at the same time post production, it got shut down for a while in post production. So it didn't get completed, completed until in the midst of the pandemic, you know, and then as far as the release of it, yeah, I mean, it's supposed to be in theaters two or three different times, then take a push back and push back. But separate from that, you know, as 2020 is going on. I've actually had two other movies shoot during the pandemic, I just had one that wrapped two days ago in Albuquerque. And so for me personally, it's been a, you know, again, I mentioned earlier, but I can't complain people have like real, you know, things there, especially during 2020 people have had really awful things that they've kind of faced, I'm not certainly gonna, I'm not going to complain about having a movie pushback or not being able to visit set because of COVID. But yeah, I mean, it's been a bit of a bummer. That's, you know, I'm still human, like, it was a bit of a bummer to, to have two movies that, you know, I wrote and produced, and I was basically producing from, you know, one was an Ontario as a movie called Lakewood that I did with Naomi Watts. And then a movie that I just did born in Albuquerque that wrapped two days ago. And it's like, I was watching real feed, like real time feeds from the camera, in my house, in my home office. And my situation of you know, being very protective in particular carry, you know, having type one, and so we are, we're very, very locked down here and the COVID of it all. And so me going to set me being on set just wasn't really an option for me. So

 

Stacey Simms  15:58

that's interesting, though, I had no idea that you know, things, I guess a few we've seen TV shows, we've seen things being filmed a little bit here and there. But it didn't occur to me that full scale production or partial scale production, because you were in your house looking at things was going on. I don't even know what to ask, are they putting their masks on until they like jump in front of the camera? Is it locked down? Is it just a free for all? Because?

 

Chris Sparling  16:18

No, no, definitely not? No, it's it is I mean, I really wish, you know, for other industries that are still out there, and people are working, you know, maybe it's just not feasible, but the film industry to its credit, and television industry, they really have some great protocols in place. I mean, it's their zones that I like, I'm not going to get into like all the like, they were really, really strict measures. Because again, I mean, there are a lot of unions involved to this screen actors, guild writers, Guild, Directors Guild Producers Guild, so they're very protective of their membership for, you know, in the first place. And there's regular testing and everything else. And again, that's a luxury not I mean, not a lot of people have that. And then it depends on the size of the production. I mean, if you're talking about a big, let's say, Marvel movie, I mean, you could, in that instance, they're going to probably create a massive bubble, wherever and like they rent out an entire hotel, or like they do a Mission Impossible, where they literally rented out an entire cruise ship. And just everyone lived on the cruise ship off the coast of Norway while they were shooting there. So like, I mean, that that wasn't

 

Unknown Speaker  17:16

like that. But that makes sense. If you can afford Yeah, but

 

Chris Sparling  17:18

if you can afford it, yeah, I mean, it's budget plays a big role. But it's really, really difficult as it should be. Because it's there are people at risk. And yeah, the actors in particular, because, you know, when you're rolling the cameras, you can't have masks on anymore. So you have to be really, really strict and in how you go about your productions.

 

Stacey Simms  17:36

What do you think is going to happen with entertainment? In the next few years, I was having this conversation with a friend in terms of are we going to see COVID and people in masks and kind of that real life reflection in the next couple of years in sitcoms, where people are trying to reflect back to us what we've been through this year? Or do you think we just need a couple of years away from it? Before we can start seeing?

 

Chris Sparling  17:57

It's interesting, I've had that exact conversation with a lot of people, where is it going to be in stories? Is it going to be that you pretend COVID just never happened? Or do you incorporate it, even if it's not just like a major part of your story, it's just an element of life that everyone is familiar with it. So it's not if you just mentioned all they get someone gets sick during COVID, a couple years ago, you just off handed say it and there's no explanation because everyone in the world is going to know what that is. So it's either, you know, in I'm of the mind where, when we're out of this, I want to be out like I don't I don't want to look back on this and try to make it I certainly don't want to make it part of other people or right now. It's you see people trying to make pandemic movies and everything else. And I'm like, I want no part of that. I want no part of that at all. And that's fine. I'm not judging them for maybe wanting to I'm just saying for myself. Yeah, I'm hopefully looking to the future here and want to get past this and move on.

 

Stacey Simms  18:51

I'm with you. I think we'll know for sure if like a rom com next Christmas makes money and they're able to do like a meet cute with COVID. emasculate that takes off, then we'll know but I don't think it's going to.

 

Chris Sparling  19:03

Yeah, and I know like I my wife watches this is awesome. You know, I I saw a couple times where they're wearing masks on the show sort of there now, and that's fine. I mean, I'm not judging it. I'm just saying for myself,

 

Stacey Simms  19:15

I would but I'm with you. I want to be entertained right now. I'm not maybe as we get past it, we can reflect for but I could be meant, you know, it'll be interesting to see because there are different opinions about it for sure. Looking back to Greenland, I wanted to ask you, why did you give diabetes to the kid in the movie, and not the wife character? Was there? Was there a thought process there?

 

Chris Sparling  19:38

It's tough to say I mean, don't really recall. I mean, probably wrote this movie by now maybe four years ago, years ago. I don't know. If I decided at this moment. I'm going to make a movie and give a character in a family that type of diabetes would I make? I don't know. I mean, maybe, maybe again, just kind of speaking to this. Again, I'm hesitancy an opportunity to make some seemed like I was on a crusade and it wasn't I'm not on it at all. But like, I think there are a lot of people I'm gonna be frank, I don't think a lot of people know that kids can get diabetes. I just don't think that they, I think a lot of people, I think when they just hear the term diabetes, I think they mean type, they just assume it means type two, they don't even think that there is a type one or type two, they just think there was diabetes, and to maybe see a child, the 78 year old child with diabetes, maybe that kind of will at least, I don't know, in a waste stop some, someone long enough to say, Well, wait a minute, I never knew that. Little kids can have diabetes. For example,

 

Stacey Simms  20:35

I mentioned in the intro this interview that, you know, I kind of knew of you knew you a little bit from Kerry's blog, my son said he was 14 years ago. So she'd been writing the blog for a while when he was diagnosed and was one of the first things I found and like many people, because very, very popular blog, you know, I read everything she wrote, I feel like I knew so much about Kerri. And it was a huge help to me, even though I have a son. And it was something my spouse who has type one, what was that like for you? Was that like a different world kind of like, okay, Kerry's writing her blog, but you were mentioned it we knew about your family we do about things that are going on? I'm curious what your perspective on six and told me is,

 

Chris Sparling  21:11

I mean, I've always tried to be as supportive as I could with everything that she's doing in the community and elsewhere and on the blog. Yeah, that was no different. I think it speaks more to just how the internet itself has changed. Overall, we're, I mean, she started blogging when people didn't even, like, I want to say she was one of maybe two or three bloggers who were blogging about diabetes at the time. And this was, you know, that's at a time when the internet, like blogs were pretty new, and people weren't generally sharing, they weren't comfortable sharing personal information online, so much. And nowadays, that's all the internet is. And so like, so it's kind of a different space. And it was, it was a much more. You know, it wasn't it wasn't the juggernaut it is now I don't mean her blog, I mean, just like any kind of blog, or social media account, or anything else like that. So her writing personal details about, say, our relationship, and then our, you know, our marriage, and then our then our daughter at first, it just seemed we were okay with it for a while. And then just again, speaking for us, this is no comment on anyone else who might be doing this now, currently, but it's just for us, we just kind of decided that, you know, just wanted to be a little more closed off with the personal stuff in that way. So that's why if you go back, I'm sure in her blog, maybe when you started. I mean, there was a I remember a lot of stuff we she would talk about the stuff she and I were doing is kind of like a young couple going into New York City and hanging out. And, you know, so because it was kind of it was just kind of fun, and had almost like, you know, almost had like an early Facebook field where you just felt like, Hey, I'm writing this to my friends and family. Right? You know, as opposed to, you know, you write this stuff, and then all of a sudden, it's just, it's fodder for anyone to comment on or anything, I don't know. And it just became, I don't know, if it's a conscious decision or not, it just became more of like a Yeah, just to kind of pull back a little bit in that way on her on her blog and stuff.

 

Stacey Simms  22:57

Yeah, for me, it was almost like a teachable thing in terms of not just diabetes and learning about what an adult perspective was, but really did help me a lot gain perspective. And even when my son was two, it was also a really good kind of template almost in terms of sharing, because it did educate a lot of us along the way. Because that was before Facebook and social media. Really, I know, you're probably not gonna think about Facebook in college, and that was it. But I mean, for you know, in 2006 when I think she started as a five there was no social media really so right. It was a really good lesson in protecting your privacy, especially as it went on. But you know, it's it's a different world. People can't share enough some people. So isn't Greenland has been released, I believe in Europe and some other parts of the world because that's, I've seen it in some of the parenting Facebook groups. People have been chit chatting over it. Yeah. I asked if anybody had any questions for you. And most people just said, I loved it. But it scared me or like, Oh, my gosh, I didn't want to think about those kinds of things. But I did get a great comment from Sarah, who said, Stacy, can you tell Chris how much my nine year old son and I appreciate it? how accurate it was? Yeah, she has a question for you. She wants to know how difficult it was for you emotionally, to write something like this with so much personal experience from this disease that you've said it's been about four years, or maybe more since you actually wrote the script. But seeing as this really is something scary in terms of end of the world, and like a lot of parents I have like, Oh my gosh, if he's stranded or you know, it's even just like, it could be forgetting his diabetes back at the movies. It doesn't have to be a comet hitting the earth or plane crashes. Terrible. Yeah, we're all scared. Did you get emotional kind of writing this and thinking about carry? Yeah,

 

Chris Sparling  24:38

I mean, it's emotional. Now even watching again. For that reason. I think it's it. There's another and this is kind of what I was driving at with incorporating diabetes, where again, I didn't want it to seem like just some plot device. Like you said, it doesn't have to be a comet hitting the earth. It doesn't have to be a pandemic that we're all dealing with. But those things there's no Another whole layer for people living with diabetes or any chronic condition for that matter, any medical condition for that matter, it's it there is an another ongoing in a way unrelenting element to your life into the life of the people who care about you. You know, and that's, I think what I wanted to really portray is that it's like, again, even though these people are selected, and that's, you know, not giving away much they are among the very, very few people selected to go to these bunkers in Greenland. You know, someone made the joke recently, it's like, you know, Gerard Butler has saved the president so many times, it's only it's only fair that he's selected. But anyway, so they were and it's like, okay, that's, that's great. But like, that doesn't nothing changes it for at least as of current standards of medicine, nothing changes, the fact that this kid still needs his insulin, and it was emotional in that way. Because we've been there, you know, we've been in those instances, and I'm sure so many people listening have where sometimes stuff can get scary. You know, I talked about the subtlety of it before. And sometimes things can go from subtle or zero to 60 pretty fast. And that by itself, those moments are emotional when they're happening. And so to kind of to try to incorporate them into even something fake. I mean, you try your best to just make it feel real and realistic and kind of pour yourself into it as much as you can. So yeah, it's, it was a you know, so yes, sir.

 

Stacey Simms  26:19

I promise I will not get too nosy. And ask you lots of personal questions about Kerri. But I am curious, I don't talk to a lot of partners, spouses of partners and spouses of people with type 1 diabetes. And that's a different experience than being a parent or being a person with type one. I'm not gonna ask you to make a grand statement, you know, what have you learned? or What advice do you have? But I am curious, when you met Kerri. And this is a long time ago, as you said, I'm, I don't know if you can remember. What did you think about diabetes at the time? Were you really worried about dating and then getting very serious with someone who had something like this? Do you remember?

 

Chris Sparling  26:55

Yeah, I do. I had a very limited, very limited exposure to type one, only because a good buddy of mine, he had been for a little while dating a girl with type one, prior to me meeting Kerri. And the standout thing was that she was low one time, and she threw a pumpkin at him. So like, that was my introduction to type 1 diabetes, that sometimes when you're low, like you can kind of like your behavior can be you know, not like, I don't know, something you come out of here, we'd like you to depending and, and she just happened to get like, very aggressive for some reason that that is, and I was like, Wow, so that was a completely rough and probably ill informed introduction to diabetes. And then I met Kerri. And, you know, thankfully, she never threw a pumpkin at me. But But yeah, I mean, it's so I learned it a lot from just being with her and being around her and see how she manages the disease. But I mean, this, the thing is that I met her God, I mean, she must have had it for about 18 years, 15 years, some anywhere from 15 to 1819, whatever it was, before I met her, so she was very accustomed, you know, to dealing with this as an adult, because naturally got as a child, and then I should say, naturally, she got it as a child. So naturally, her mom and her dad, were helping her as a child, but then she, I met her as an adult. So she has several years of managing this disease on her own. And so it was kind of like I had to, you know, again, this is just specific to my relationship with Gary, I'm not trying to map this onto how other people do their thing. But like, I learned the boundaries in a way of like, what is the best way for me to be helpful in these situations. And even something simple, like I learned very early into this day, know that if carry is low, you have an instinct, when someone's not feeling well, for any reason. You're like, Oh, just sit down, sit out, you know, if you're feeling if you're feeling dizzy, whatever, she's the opposite. And then this is just her. She's the opposite. She doesn't want to she doesn't want to sit down. Because sitting down in a way, mentally allows it to settle in more for her. She, you know, she can't fully explain what she's saying. She's, like, I can't resist it, if I'm accepting it. And that, you know, again, it's not some woowoo thing. It just for her. That's it. So, like little things like that. Over the years, I've kind of and then bigger things over the years that I've come to say, all right, well, this is my role in this, I guess.

 

Stacey Simms  29:07

Getting back to screenwriting for just a moment. You know, there's a lot of I think a lot of people think that any job in the movies is super glamorous. And it's not as difficult as it is screenwriting has to be so difficult to me to think about. Because you're you're pretty much by yourself writing. But I'm curious. Do you have any advice? I mean, for anybody listening who would love to do what you were doing?

 

Chris Sparling  29:29

Yeah. Um, read screenplays. It's the best education you could possibly get. I mean, there are entire screenwriting programs. You could go spend a couple $100,000 on right now. And I'm not taking away the value of that but at the same time, I would put it right up there with just reading the screenplay a week.

 

Stacey Simms  29:46

How do you get a screenplay? Pardon my ignorance?

 

Chris Sparling  29:48

No, it's fine. I mean, just go online. Just Just go to Google and type movie screenplays and I'm sure like the vast majority of movies you've seen in like are you can read screenplays for

 

Stacey Simms  29:58

Is it still fun for you?

 

Chris Sparling  30:01

Yes, I this, I've been doing this for, like professionally for over 10 years now it's been my, my job. You know, just like anything else, things start to get a little old. I think for the next 10 years, I think I look forward more to writing and directing more as opposed to just writing. You know, I've directed a couple movies so far, but I want to do more of that I think in the next 10 years will say, yeah, I mean, I still love it. I love what I do. I feel very fortunate that I, you know, I tried for a very long time to break into this industry. And so like, I never lose sight of that. Yeah, I mean, there's certainly days that you just, it's just not happening. You're just trying and you're like, wow, I'm really awful at this. And so no, and, and other days, you're kind of like, Yeah, maybe. I think it's interesting, during, in the COVID of it all, like I've been, I remember, especially, you know, early early on in it, where everyone was on lockdown, and everyone's like, Oh, you must be getting so much done, you must be in so much writing done having all this time. And I was like, I can nothing done. I'm like, I can't get my head in the game at all. And that went on for a while, like creatively, I just couldn't get there. I guess, understandably, given the circumstance. But over time I was. It's gotten easier. I think more than anything. Now. It's just a time thing i'm sure Kerri would agree with this is that because of how we're doing things with, you know, with with us and our kids being you know, home from school, and that's just how we're doing it. It's just, there's a lot of us being here and having to having to kind of shuffle responsibilities back and forth. And so, you know, the amount of time I actually have, and that she has to take it worked on is that's pretty valuable commodity these days.

 

Stacey Simms  31:36

Yeah, no doubt. So before I let you go, is there anything that you can share with us that you're working on now, in terms of writing or things that haven't started yet?

 

Unknown Speaker  31:45

Yeah.

 

Chris Sparling  31:49

You can tell I, you know, I have a long gestating project. Basically, it's an adaptation of Stephen King's the talisman. I don't know if that one's ever going to happen, quite honestly. It's just I mean, it's something that it's it's Steven, not the name drop, but it's a Steven Spielberg project that he has been trying to do for like 35 years, there have been like, I don't know how many iterations of it that just just kind of come together, then he changes his mind or it doesn't happen. And then he moves on and then tries again, and like 510 years later, so who knows if that this one will follow that same trajectory. But that's one that I've been working on for a while, and then and a couple other projects. And then I'm just I just started a new script of my own. So in other words, not like a writing a script or adapting a script for somebody else. Right. You know, it's one that I'm hoping is going to be my next directing project. So,

 

Stacey Simms  32:34

so yeah. Okay, so we will look for greenlit, I will put all the information in the show notes where people can find it. Anything that we should look for that might be like a diabetes community, in thing I mean, now I have to look for the juice in the grocery store.

 

Chris Sparling  32:47

Yeah, there's that scene. I mean, there's the pump scene. You know, there's the scene where, um, there's a lot of them. It's not like it doesn't it's not like some small facet of the movie. I mean, it's so

 

Stacey Simms  32:56

cool. The mom isn't trying to read six until me like the panel there's no like

 

Chris Sparling  33:01

easter egg thrown in. Right? Um, you know, it's interesting though, because the the LED with this there's Kari asked me this question when choosing interpretive me which again, which is kind of bizarre. She was like, Why? Why does she's even curious. In the movie, the boys wearing an old like Medtronic pump in? She's like, why that old pump? Why not like a more modern pump even more modern Medtronic, but I don't know, I mean, quite honestly, I mean, it's probably the props department that chose that one. And the director approved it. And then they're also clearance issues where you can't just use a product, right? You'd have to get approval from the company. And so I could find out, I'm sure, but still, what I do wonder, and I might have done the same thing had I directed movie is that old model is older model PUMPS LOOK more medical, they look like medical devices where a lot of the more you know, more modern pumps will say they look sleek, they look like cell phones, they look like you know, and so I think for an audience, if the if part of the effort here is to kind of maybe shine a light on this on this condition, this disease, you certainly don't want them to be confused, where they see something like well, what is that? I don't know, it's a phone or what is that? That and, and I think, you know, that's, I don't know what that is. I don't know if that's a fun fact, I don't know how you classify.

 

Stacey Simms  34:15

Now, that's exactly what I meant that sorry. When because when we look at the screen now we're all gonna be thinking like, wait a minute, because I know my audience, they're gonna pause it, they're gonna look at it, they're gonna zoom in if they can, and you know what pump is that? And that's, that's a really good reason why?

 

Chris Sparling  34:30

I don't think it's a fun fact, because I don't know if that's the right way. Right? It's like a fun speculation. There you go.

 

Stacey Simms  34:37

You know, we're bonkers that way we'd like to know. So we'll see what happens. Chris, thank you so much for joining me and you know, for for speculating and for sharing so much of your time. I really appreciate it. Oh, thank you.

 

Unknown Speaker  34:54

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  35:00

For more information about the movie, the trailer where you can watch it, all of that at the episode homepage at Diabetes connections.com, wherever you are listening, if you're listening on a podcast app, you can always come back to the homepage and find out all of the info. Not every app has a great way to see the show notes. You know, we're on Pandora and Spotify and apple and everyone's just slightly different. So I like to keep it at home base. We also have transcriptions for every episode this year. And we're starting to go back and add them for every episode. So I'm very excited about that. I will also link up the carry and Chris interview that he mentioned, because Kerri scooped me she got the interview first. It was really fun. I interviewed my husband before for this show, and it's a little bit of a weird feeling. But it was a lot of fun to watch them and I recommend that especially if you're a big fan like I am of six until me and of Kerri. Up next we're going to talk about this new at home test kit from jdrf. First Diabetes Connections is brought to you by Jeevan hypo pin, almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's where evoko pen comes in. It's the first auto injector to treat very low blood sugar gvl caple pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies. 99% of people were able to give g vo correctly. I'm so glad to have something new, find out more go to Diabetes connections.com and click on the G Volk logo g book shouldn't be used in patients with pheochromocytoma or insulinoma. Visit chivo glucagon.com slash risk.

 

In innovations this week, where we talk about the latest and greatest in the technology sectors and new stuff in our community, I want to tell you about jdrf new T one detect this just came out last week as you're listening to this episode, if you're listening to it when it first airs, and T one detect is jdrf snoo screening education and awareness program. So basically, it's screening you for type 1 diabetes auto antibodies, I'm going to read a little bit from the jdrf website. They say until now t Wendy symptoms and a diagnosis often come out of the blue. Today, families can use testing to detect t Wendy early so they can plan and prepare with one blood test anyone at any age can find out before symptoms even occur. If they are at risk for developing to end, the test is easy, simple and can help save lives. So this sounds great. This sounds a lot like trial net, who we've talked to before, my understanding is that it's different. It's not quite the extensive test. And by that I mean, it looks like a different test, it's a finger prick, and you send the blood samples back to the lab. And then you get your results back. And they say you get next steps as to what they mean and what to do. So I'm hoping that that also means counseling of I haven't seen anything about that yet. Because, you know, that's the only that's one thing about doing these tests, any health tests by mail, right, you want to get the results. And then you want to have somebody sitting next to you telling you what you do with those results. So you're not feeling alone. You know what, if you have these antibodies, you don't know what they mean, you know what I mean? When you click through the website, it actually takes you to enable bio sciences, T one D auto antibody testing, and that's from whom you actually order the kit, you make an account with the company, you can check through your options on privacy, you can decide if you want to make your results available to jdrf. You can say Do I want bio sciences to have my personal health information, there's a lot you can do here. The tests are not free is my understanding. But I didn't see anything about cost anywhere on the website. However, I didn't get far enough through it to actually order the tests. And what's interesting here is that T one detect will be available to people whether or not they have a family member who has type one diabetes, and that's different from most of the other screenings, including trial net. So a lot of questions here. I have reached out to jdrf they have said that they're you know more than willing to come on. So now it's just a question of scheduling. So I'll be putting in the Facebook group Diabetes Connections of the group when we are ready to go with that, and I will certainly solicit your questions and we will get them answered. My biggest question is, why make this separate? jdrf I believe already helps fund trialnet. So why now fund something different when trauma needs money? So I'm going to find out I'm sure we'll learn much more. I am definitely in favor of more research and more testing because boy, if we could test everybody for type one, we could learn so much more about possible prevention and treatment and all that good stuff. So don't misunderstand my questions here for doubter cynicism. I'm just really curious about this new program and of course, we will find out more programming note for the rest of the year. I'll be honest, I'm not really sure we have about two weeks left to go for 2020 and I do have the shows planned out. We're going to do wait wait, don't poke me the Game Show that I aired at friends for life. If you didn't go to that winter conference, you'll be able to hear the show and you'll actually be able to watch it, I'll put it on YouTube the same time the podcast goes live. That's always a lot of fun. And then I have another panel that we taped earlier this year about the type one and type two community with some familiar faces to many of you. And that will be the last episode of 2020. However, as I've said before, there's always some interesting stuff at the end of the year. And if we're able to jump in with some more breaking news, or something really interesting, comes up, you know, it's not like I'm traveling This year, we're all sitting around on zoom. So we will bring you you know, any breaking news that happens in our community, and I basically just reserve the right to throw a new show in here or there. But we are almost done. Holy cow this year, and not much for reflection. I'm not quite sure that I'll do a lot on 2020 I think I need to get a little further away from it and further toward Good Stuff and Being with you all the view more in person before I can really properly reflect but I gotta tell you, I am glad to see 2021 on the horizon. thank you as always to my editor jump you can. It's from audio editing solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  41:18

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged

 

Transcribed by https://otter.ai

Nov 17, 2020

Alisa Weilerstein has been living with type 1 diabetes almost as long as she’s been making music. She debuted with the Cleveland Orchestra at age 13, played Carnegie Hall at 15, performed at the White House at 27, and at 29 was awarded the MacArthur Foundation “genius grant” fellowship. She was diagnosed with type 1 diabetes at age 9 and her first concern, of course, was for her fingertips! Alisa speaks to us from Berlin, where she and her family spend half their time.

In Tell Me Something Good we share stories about girl scouts stepping up and hearing a Dexcom alarm at the Supreme Court.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's book: The World's Worst Diabetes Mom!

Alisa mentions playing in concert while pregnant. See that video here

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

 

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Episode Transcription (rough transcription, not yet corrected)

 

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke Hypopen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, she was playing the cello before she went to kindergarten. In fact, when Alisa Weilerstein was diagnosed with type one at age nine, her first thought was her  fingertips.

 

Alisa Weilerstein  0:41

I was already quite curious about the cello and the left hand, of course, it's the hand that goes on the fingerboard. And I remember saying to my doctor, I'm not going to click my fingers on my left hand, they won't be able to play.

 

Stacey Simms  0:50

She was certainly able to keep playing - Carnegie Hall at 15, the White House at 27 and at 29 Weilestein was awarded the MacArthur Foundation Genius Grant fellowship. She has quite a story. It was great to talk to her

and tell me something good girl scouts stepping up. And did you hear the Dexcom at the supreme court hearings?

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of Diabetes Connections. I'm so glad to have you along. I am your host Stacey Simms, and we aim to educate and inspire by sharing stories of connection. If you are new to the show, I am so glad to have you here a little bit about me. My son was diagnosed with type one right before he turned two he is almost 16 now so it's been a minute, my husband lives with type two. I don't have diabetes, but I have a background in broadcasting and local radio and television. And that is how you get the podcast. I am always amazed when I meet and talk to people with incredible musical talent like our guest this week. To me playing music reading music, expressing yourself through music is like another language. I appreciate music. But I don't have that kind of innate understanding that a true artist has my old radio show co host when I did mornings in Charlotte, North Carolina, where I am now for more than 10 years. And he was also a musician. And they just have this natural ability. I mean a true musician who can write music and read music and play and play by ear. To me it really is something special. And I hope I did this interview with Alisa justice. Because of course we're interested in talking about diabetes, but we talked about music as well.

I also want to let you know, we are not out of November yet diabetes Awareness Month of course, we'll be doing some fun things on social media. I have a big sale going on for the world's first diabetes mom real life stories of raising a child with type 1 diabetes, it is on sale right now use the coupon code November, you've got to use it on my website at Diabetes connections.com. I can't do coupon codes on Amazon sorry. But this covers more than free shipping and everything else. So it's still a nice discount if we're doing $4 off for the rest of the month. So go to the website, scroll down, you'll see the book in the middle of the page there under the most recent podcast episodes. And to use the promo code, you're going to click order a signed copy. The other links take you to Amazon and you can't use a coupon code there. But if you click on order a signed copy, it'll take you to the right place. There's also a little teeny tab on top that says shop.

It's hard for me to believe the book has been out for a year. I hope you're not tired of me talking about it. I got one nasty email this year I will share. Somebody stopped listening to the show two weeks after I published the book because he was tired of me talking about it. I felt like saying to him, you write a book, see if you want to talk about it! (laughs) But I appreciate you you know putting up with it. Especially this year when the whole book tour was canceled. I was supposed to like many of you, right? We were supposed to travel and go places and do things so you know I get it. Of course everybody's in the same boat. But I am going to continue to talk about the world's worst diabetes mom because man it was so much fun to put together and I'm not ashamed to say the response has been fantastic. So if you want to get a copy promo code November at Diabetes connections.com

Diabetes Connections is brought to you by One Drop and getting diabetes supplies because a big pain you know that not only the ordering and the picking up but the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test strip plans plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about not that surprising when you learn that the founder of One Drop lifts with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more go to Diabetes connections.com and click on the One Drop logo.

My guest this week has been living with type one almost as long as she's been making music. Alisa Weilerstein has a remarkable story she debuted with the Cleveland Symphony At age 13, played Carnegie Hall at 15, performed at the White House at 27. And then she was awarded the MacArthur Foundation Genius Grant fellowship when she was 29 years old. I found her Tiny Desk concert. If you're familiar with those from NPR, that was 10 years ago, I will link that up as well. She is currently in Europe where she and her family live for half the year. I spoke to her. It was back in September when she her husband and their four year old daughter had just traveled back to Berlin from San Diego. Elisa, thank you so much for joining me, it's so interesting to talk to you that you're in Europe, we've got a little bit of a lag here on the call. But thanks for coming in. I

 

Alisa Weilerstein  5:37

appreciate it. Oh, you're so welcome. Thank you for having me on your show.

 

Stacey Simms  5:40

Before we jump in and talk diabetes and music. Tell me a little bit about living in Berlin. You live there half the time now?

 

Alisa Weilerstein  5:47

Yes. Well, I mean, I'm a I'm a cellist I played classical music. Of course, in normal times, I play about 120 concerts per year. And they're split between Europe and North America with an occasional trip to Asia. Of course, during the pandemic, that's been radically changed, obviously. But that's my schedule during normal times. And so it was very important for both me and my husband, my husband, as a conductor, to have a base in Europe as well, so that we're not just constantly on transatlantic flights, more than we actually need to be. So we have a base in Europe, which is Berlin, and it's such a great Center for the Arts. And our daughter loves it here. Our daughter was actually born here four and a half years ago. And yes, that's one reason why we chose Berlin.

 

Stacey Simms  6:27

I'm curious what the flight was like, and what the experiences like traveling from the US right now, with everything that's going on?

 

Alisa Weilerstein  6:33

Well, it's interesting, because then we spent most of the pandemic in San Diego. So we were there from March 13. Basically, you know, that that the day that all of the all of the borders shot, and I actually traveled to Germany in June, to play a live broadcast in Hamburg. At that time, it was a two week quarantine in Germany. And so I can't even hear it here in my apartment in Berlin. And at that time, it was even more sort of wacky to travel at that point than it was a week ago, when we flew back here to San Diego with my whole family. At that time. I mean, there were there were so few flights, and there was practically no one in the airports. So I flew from LA to Newark, of course, you know, you don't take your mask off your face, obviously. And even though there were like 10 people on my site, and not more than that, and then I had 10 hours in Newark, and then I suppose from Newark to Frankfurt, and I got a test immediately upon arrival, they were even doing testing at the airport at that time. And then my results arrived within 48 hours. You know, I tested for the for the virus and also for the antibodies, which unfortunately, I didn't have the antibody, I was actually disappointed. But anyway, I flew back to San Diego to rejoin my family. And then my whole family to my husband, my daughter and and also our daughters many. We flew back to Berlin. Again, it was a very few flights to San Diego, Chicago, Chicago, London, London, Berlin with a four and a half year old, you can imagine what oh, my gosh. But, you know, we tested right before literally before he went to the airport, we went to a lab to test and then we got tested at the airport and in Berlin Tegel airport there. They're doing testing upon arrival. And those results came within 24 hours. And potential street for me got here. So my girl was able to go to school right away here, which made her very, very happy. Great. Yeah,

 

Stacey Simms  8:18

yeah, I'm glad. I'm sure you're all glad to be settled.

 

Unknown Speaker  8:21

Oh, yeah.

 

Stacey Simms  8:24

So let's talk about type one. You were diagnosed at nine. Do you remember your diagnosis story?

 

Alisa Weilerstein  8:30

Oh, yeah. Very well. Yeah, it was actually the month before my 10th birthday was March first 1992. And as you remember that, of course, like 92 was a kind of critical year in diabetes research, which definitively proved that tight control could ward off the risk of complications by you know, whopping percentage, and they are 66% less likely to get complications if the agency was 7% or below. So that was encouraging. But yeah, my diagnosis story was essentially, for the couple of months leading up to my doctor's visit, I exhibited the classic symptoms, I was urinating frequently with who had extreme thirst, and I was losing some weight. And I've always been a kind of muscular body type. And I suddenly became, you know, sort of like belly dancer and not like my energy was okay. And was was actually sort of normal until like, about a, I remember, like, a few days before I went to the doctor, and I was just feeling just sort of tired, which was very unlike me. And my mother took me to the pediatrician. She said, you know, maybe you have a bladder infection because I was, you know, going to the bathroom every hour or something like that. So I remember we got a urine sample from home, which the doctor had asked us to do that. And so you know, I peed into a jar basically. And then we went to the pediatrician and, sorry

 

Stacey Simms  9:52

It's a type one diabetes all the time.

 

Alisa Weilerstein  9:58

The diabetes podcast, so I'm your listeners are familiar with this. And anyway, I am submitted the sample. And then I remember the doctor who might like very much, I actually took my mother aside, and there was some whispering, which I didn't know about. And my mom looked very serious. And she said to me, Well, the doctor thinks the jar was contaminated. So just give her another example. And so I went to the Darrell bathrooms and gave her a sample from the sterile cup. And unfortunately, the result was the same, which of course, showed sky high glucose. And the doctor said, Well, you know, you need to go straight to the ER, and doctor told me, so do you need to get a blood test? And so I thought, Oh, my, you know, I don't really like and then I remember asking my mother, I said, well, Can I at least get some m&ms afterwards. And my poor mother, she, I mean, she didn't know much about diabetes, but she heard that word diabetes mentioned. And she knew that that meant a sugar issue. And so she just kind of looked at me and she opened her mouth, and she closed it again. And ah, and, you know, we drove to the hospital. And then the rest was really kind of blur. My father, you know, I remember my mom calling my father saying you need to get here now. And my, my little brother at the time was four. And I remember them all kind of standing around me and I was getting weighed. And then suddenly, I was like, on a gurney with IVs, and needles sticking in and out. And then doctors coming in saying, Yes, we think it's juvenile diabetes. And of course, you know, somebody was in examining my tongue to see how to hide it. And I might I, I might have been, and it was very kind of dramatic. My blood sugar was 464. At the time, they said that actually, we caught it relatively early. If you can believe that. I think at that time, some kids were coming in already, you know, the 800, or something like that, coming into with, you know, really, rather advanced ketoacidosis. And I wasn't there yet, I was throwing some ketones. It wasn't yet in kind of a dire situation. Anyway, I was then in the hospital for about a week just for the kind of diabetes education and it was kind of a crash course in how to manage type one diabetes. And at the time, my insulin regimen was NPH. And regular to the fast acting because it was it was even before the time of humalog. And my blood sugar meter took 45 seconds to read the blood glucose results and counting carbohydrates and all of that stuff. So this was my diabetes education.

 

Stacey Simms  12:16

At nine years old, you were already on your way to playing music and performing as you did anyone say anything? I had to fit your first question, right? Can I still do this? What did they tell you about your musical career?

 

Right back to Alisa, she's gonna answer that question. But first diabetes Connections is brought to you by Dexcom. And they have this great partnership with Tandem now with basal IQ and control IQ. And we started on basal IQ as soon as it was available. And this is the Dexcom g six tandem pump software program, and immediately started doing less work for better results. When we switch to control IQ, oh my gosh, even less work even better results with diabetes. I don't know if you remember, but years ago, they started with just putting the CGM information on the pump and it didn't communicate, it's just there. But this is something else, the whole system keeps spinning more steady. His time in range has increased significantly, his agency, you know, I don't share exact numbers, but it is the lowest that he's ever had. Of course, individual results may vary. But to learn more, just go to Diabetes connections.com and click on the Dexcom logo right back now to Elisa sharing what she was most worried about at her diagnosis.

 

Alisa Weilerstein  13:38

Well, this is why I say 1992 was actually I mean, if one had to be diagnosed with diabetes, you know, at any time, it was an encouraging year to be diagnosed. Because I mean that the doctors who actually were well informed said, If you manage this, well, you will be able to live exactly the life that you want to live. And that was the constant messaging from my doctor at the time, all the nurses around each month this is and and they were teaching me how to do things. And he said this is the reason you have to do this is so that you can live a full life and do all the things that you want to do and play the cello do go to school, see your friends, play sports, do all of these things. And I remember there was just one issue, where I kind of had to make a special accommodation, which is what the finger picking, because of course I was already as you say I but I was already quite curious about the cello. And the left hand, of course is the hand that goes on the fingerboard. And I remember saying to my doctors, I'm not going to click my fingers on my left hence I won't be able to play and I but however if I was able to prick my fingers on my on my bow hand that wouldn't have affected that. So I only used three fingers to prick and my whole life after that I only I only use the same three fingers to pick my finger, my test my blood sugar, and luckily they accommodated and they basically well as long as you do it and as long as you don't hurt yourself. Sure. That was the answer.

 

Stacey Simms  14:57

I was going to ask you about that. Because I couldn't imagine especially the amount of finger prick you had to do back then. Yeah, Listen, I've, for somebody who nagged her son for years to rotate fingers do a different thing. Yeah, you were able to just move it around enough so that you didn't have issues with just those three fingers.

 

Alisa Weilerstein  15:14

No, I didn't. And, and even at the time, I mean, the lancets were very good, very painless, and very thin. So I mean, there was actually there was never an issue. And I mean, at the time, the recommendation was to test four times a day, I remember at the time that was considered like being very responsible. Of course, now, we would probably say that's kind of bare minimum. But as I got older, and I tested more often, I mean, I was asked to test before the continuous glucose monitors were accurate enough to kind of rely on I was testing 10 times a day, and I was just using those same three fingers.

 

Stacey Simms  15:43

That's so interesting. And you've mentioned a couple times 1992, we should just step back and mention as you listen, if you're not familiar, we're referring here to the dcct trial, the diabetes control and complications trial, which was really the first time as you said, that they believed that you could make a difference. I mean, it's hard to believe that before that time, doctors thought, Well, that's it if you have type one or juvenile diabetes, as they called it, you wouldn't live past 30. And this showed that you could,

 

Alisa Weilerstein  16:09

yeah, and you would kind of have to go to an alternative doctor to get anything more hopeful, or any kind of agency with it's really yeah, and

 

Stacey Simms  16:16

I'll link up more information on the dcct. It was such a pivotal time and diabetes. And it wasn't that long ago, when you think about it now. Alright, so you're then on your way, you're doing what you need to do. You've got your family on board, you're playing music, Cleveland Orchestra at age 13. And on and on. And I have to say, when I watch someone play the cello, and please forgive me, I am so musically ignorant, except that I enjoy listening. It seems like it's very athletic. It's a very physical looking instrument to play. Can you talk about that? Is it I assume that

 

Alisa Weilerstein  16:48

yes, it is? Oh, yeah, yeah, completely. And especially I'm not very tall, myself, I'm about five to my posture is good. You know, you have to learn how to use your body in a very efficient way, like kind of a lot of Alexander Technique. And yoga concepts can apply very well to pretty much any instrument, but kind of the cello, especially in terms of the strength that it takes. And truly free with instruments, you have to basically use your body to know how to use the natural energy and not natural body weight very well. And of course, it just takes a lot of years of practice to build it up. I mean, there's no substitute for time really, with that,

 

Stacey Simms  17:21

you must have by now of routine and you you the physicality of it, you've got that down. But when you were younger, and first learning, what did you do? Did you keep tabs like in your chair, or in your case, you know, how did you manage diabetes and playing

 

Alisa Weilerstein  17:35

I mean, I kept glucose tablets pretty much everywhere. playing the cello itself did not cause low blood sugar, I mean, there were a couple of pieces that I knew were kind of workouts in a way and that I would sometimes eat a little bit or maybe drink a little bit of juice before, I mean, like the way you would before going for a run, just to have like a little bit of energy to make sure that you have a threshold that can kind of carry you through if you're going to drop a little bit. So it was a lot of trial and error. And I just found out kind of what worked in I mean, in terms of going on stage, especially before the pump, certainly which I got an A pump when I was 16. So that was 98. And certainly before the CGM, I would test before going on stage. I mean, I've just tested in general much more on concert dates than on other days. And I always like to get to the hall about an hour before so that I could slowly put the gown on. So they put me so they kind of put my ducks in a row in terms of playing and just warming warming up slowly and kind of just getting myself in the mental space. But it was also blood sugar wise, it was just important for me to be able to test one hour before, kind of every 15 minutes. And then like two minutes before I'd walk on stage just to make sure that I was not going to get low on stage. I mean, like if I was 170, or something on stage, it wasn't ideal, but it was better than being 65 when you're going on stage because of course below that, then you kind of start to lose coordination. I mean, my ideal number to go on stage would be like 130 because the blood sugar's maybe slightly on the high side, but it's good enough that I felt normal. And I had a threshold to drop, so that if I walked offstage, and I was 85 or something like that would be fine.

 

Stacey Simms  19:10

You mentioned there were a couple of pieces that stand out as being more physical or do can you share those with us? I'm curious, which anything stand out?

 

Alisa Weilerstein  19:20

Sure. There's a concerto, which means that there's a solo instrument with an orchestral accompaniment, and the composer is Prokofiev, who was a Russian composer who actually died the same day that Stalin died. Oh, my 1953. Yes, the same day. So of course, nobody paid attention when he died, unfortunately, because it was one of those really, really tragic ironies to add to so many tragic ironies of the time, but he wrote a fantastic masterpiece for each other an orchestra called the symphony concert count, which is a symphony concerto. It's a 45 minute kind of tour de force, for the cello and for the orchestra as well, but especially the solo cello where which is just Just wild, very, very, very physical, technically very, very challenging. And it's just kind of an endurance exercise. And I remember just being very sure that I was not going to get low on stage. So I did a few practice runs of that pizza. The first time I played it in public, the first time I played it in with the orchestra, I was about 16 or 17 years old, I did several kind of practice runs, just running through with it with a kennel reduction for friends and for for my parents and things like that. So I knew kind of what my blood sugar threshold was with that piece in particular, it's funny, it was

 

Stacey Simms  20:34

Prokofiev. All I know is Peter and the Wolf.

 

Unknown Speaker  20:37

That's what I think. Yes, of course. No, it's just what I pay for my daughter all the time. You're fantastic.

 

Stacey Simms  20:43

It's funny. Oh, yeah. That's great. Yeah, yeah, at this point, it's almost like a professional athlete. In terms of I assume you have a routine, you know, you know,

 

Unknown Speaker  20:52

look, at this point, you

 

Stacey Simms  20:54

know, what you're doing. I'm curious. But anything throw you for a loop in terms of diabetes. These days, I'm thinking about advice for, you know, younger people who are starting out in a musical career, or, you know, just anything like that. So what throws you for a loop, we're in there?

 

Alisa Weilerstein  21:10

Oh, well, sometimes I can have a very inconsistent response to stress or to nerves, because generally speaking, I don't get nervous on stage. But perhaps the kind of travel situation, especially these days can make me quite stressed out and, you know, say high strung and nervous and then my blood sugar just shoots up, sort of out of nowhere, or it can be like a kind of a sticky high, and I can't get below 185, no matter how much I mean, like I can be, like, feel like I've got an ID of insulin and nothing brings it down until I relaxed, that can just sometimes be really kind of flummoxing and very frustrating. And then of course, I get more stressed about the blood sugar. And then of course, the stress response doesn't go down. So that's something that I just find very frustrating. And something that I feel is kind of out of my control and less like kind of just force myself to do some deep breathing in a kind of airport travel situation, which is stressful. Other things that life can throw your way. unexpected things I just signed, you know, test test test, look at the CGM as much as possible. And then you can catch the kind of unexpected highs and lows much much more easily. And so that's my advice to anyone just test as much as possible. Or if you have a CGM. Just make sure that you're really aware of what's going on there.

 

Stacey Simms  22:20

Can I be nosy? And ask where you were your tech? Yeah, she during performance, of course, I'm trying to think of the body motion and where it's, you know, where it makes sense.

 

Alisa Weilerstein  22:29

Well, not on my arms. Probably imagine, I put my infusion set in the center of my stomach. And when I'm wearing a gown, there's, I'm not sure even which company makes any more. But I think there's the diabetes mole, which has something called the five thing and this kind of like a garter belt, and it has a pocket, which is where I put my pump, when I'm wearing a dress or a concert gown.

 

Stacey Simms  22:52

Right? You've mentioned your daughter a couple of times, if they did, were you concerned, I obviously, you know, it takes a lot of work when you're wanting to get tight control before you get pregnant. I'm curious. Sounds like your doctors told you from the get go that you'd be okay. Can you share a little bit about that journey in terms of, you know, deciding to have your child,

 

Alisa Weilerstein  23:10

it's something that was kind of hanging over my mind. And it was it that's a personal thing. It's just not to say that, oh, you get a diabetes diagnosis, and you worry for the rest of your, let's say, especially if your child 17th, whether you're going to be able to have a healthy pregnancy or not. But I did actually have that kind of worry. And I would say I spent probably two years before we decided it was the right time to try and conceive just kind of experimenting to see how tight I thought I could get the control, especially with an intense travel schedule. And I found that at the time, the CGM was getting better and better. Like as you know, back in, you know, 2008 2009, the CGM was maybe 40% accurate assess. I mean, it was just terrible. I was like throwing it against the wall sometimes because it would just as I took Tylenol or something, it would go up to show that I was reading 400 because it couldn't, it didn't react about this kind of medicine and other things. And it was fall off. And it was just awful. So I get back two years before, you know my daughter was born in 2016. So this was like 2014 or so. I mean, my agencies had been in the low sevens at the time, and then I got them down to 6.8 6.6. And I thought, Okay, I think I'm going to be able to manage this. Because I was doing a lot of fine tuning. And then as your son will probably relate to this, like, the more you pay attention, the worse you actually think your blood sugar is, but it's actually your budget is actually getting much better. You know what I mean? Yeah. And so this was something that I realized that my doctor was telling me I was doing it, basically. And I was like, Really? I don't think I'm doing and then I saw Oh, my average was like 129 Oh, okay, that's not bad. But I mean, of course, it needs to be better than that for pregnancy. But this is in range. I could finally envision, you know, having an average of you know, 110 or something like that. And so we got pregnant and of course, the pregnancy itself is the biggest motivator. And I, of course, I was poked and prodded more than I care to remember during the pregnancy because of course, I was classified immediately as high risk and I had to see the doctor, you know, all the time, but I was working and traveling until 35 weeks. Oh, well, you can find a YouTube video of me doing my second to last concert with our daughter, my daughter and my belly. I played Hindemith concerto with the Frankfurt Radio Symphony. And my belly was absolutely huge. And then like, I'm walking on stage with this thing. And I saw myself, wow. I mean, I remember what it felt like. But seeing it now as it was some distance. It's kind of kind of amazing to me that I did that. But it was important to me to keep going. And I generally had a very easy pregnancy until the very end, and I felt best. And my blood sugar was best when I was active. You know, I was under strict supervision of my doctors, but I managed to do that.

 

Stacey Simms  25:50

How do you talk about your diabetes with your daughter?

 

Alisa Weilerstein  25:52

What does she know? She knows, in a very general way, if she sees me drinking juice, she knows that I'm low, because I don't drink juice. Otherwise, she knows that I have diabetes, she knows the word diabetes, and what you know, let's say in a very general way, what it is, and she knows what my medicine is, and that she's not supposed to touch it. And she can watch me kind of handle it, things like that. But that that's this is only Mama's territory to kind of handle things like that. So sometimes she likes to kind of look at my pumpkin to know what it does and things like that. But other than that, she doesn't know too many other details.

 

Stacey Simms  26:22

One of the things that when we were talking about coming on the show, I noticed that you're working with he Genesis, can you tell me a little bit about what you know who they are,

 

Alisa Weilerstein  26:31

he Genesis is? Well, it's an amazing company, they don't only work on diabetes research, they work on kidney disease and liver disease. And really, they're kind of primary goal is to make sure that there are no organ shortages for anyone who needs them. And so what they're working on is Type One Diabetes islet cell transplants. So they have an incredible immunology team, which I've been in touch with a bit. And it's just, it's very, very exciting, the research that they're doing, and my association with them really is to kind of spread the awareness of what it's truly like to live with type one diabetes, and to stress the need for a cure. Because nowadays, with biotech, making such amazing advances, sometimes people around me who don't know me, so well look at me, and they they don't really even know that I have diabetes, and they say, Oh, well, you make it look so easy. And it seems like with the technology, you can live a very, you know, you What do you need a cure for in a way. And this, of course, is exactly the wrong kind of message that you want to send us and Well, yes, I'm a very positive person, and I manage my diabetes as best I can. And I have the technology and the knowledge to do that. However, as we were saying before, living with Type One Diabetes is a 24 hours a day, seven day a week, 365 day a year job. Even with the technology, there is not a moment that goes by that you can really relax about it, you always have to be paying attention. I don't know how to look at a plate of food and not count the carbohydrates. And I don't know how to go for a run without thinking, Okay, how is this going to affect my blood sugar is my pump actually going to react to that and say, if I if I go for a sprint, how many glucose tablets do I have? Am I gonna drop too low to actually finish it, that kind of thing. And that's even with the technology that we have now, not to say nothing of hyperglycemia, gun awareness and all of these other things that we know are dangers with living with type one diabetes, and you as a parent of a diabetic have a type one diabetic who is luckily very well controlled. This is probably something that that you were always concerned about hypoglycemic unawareness overnight and things like that. I know that this was certainly something that my mother probably lost countless hours of sleep over. And type 1 diabetes is, you know, to say nothing. Also at the expense of managing type 1 diabetes, we all know what insulin prices are, we know what the prescription medication needs are. And the fact that type 1 diabetes is actually the most expensive chronic disease to treat of any chronic disease. And so this is really why we all need to be lobbying this and countless other reasons. This is why we are all lobbying for a cure. Not treatment, pain, of course, better treatment, but in the absence of a cure. But the ultimate goal, obviously is is a real cure.

 

Stacey Simms  29:08

We didn't talk much about music during this interview. I didn't know you were here to talk about. Okay, that sort of thing. But you have been playing according to what I've read you really been playing since probably before you remember much right? Did you start playing cello at age four?

 

Alisa Weilerstein  29:23

I did. Yeah.

 

Stacey Simms  29:24

Is it still exciting? Is it still challenging? Is it still fun?

 

Alisa Weilerstein  29:27

Oh, yes. And I'll eat all of the above. Yes, challenging, exciting, fun, frustrating, wonderful. tear my hair out type of frustrating sometimes as well. But you know, is one of those things where there's no concrete goal, really, I mean, you just have to keep growing. And in a way, there's a kind of a parallel with diabetes management, there are two because as we know, there's no way to do it perfectly. And you have to just do the best you can. And so that's like being an artist. You're constantly striving to be better to be the most studiers to yourself. To the composer's to what you're trying to say, you know, you're always searching for ways to do that better and to do it more clearly. And to do it more Honestly, I'm always experimenting.

 

Stacey Simms  30:09

Well, Lisa, thank you so much for joining me and for making time to talk about this. It's been a crazy time we're living in now, but I wish you the best as you're now in Europe. And, but really, thank you so much for spending some time with me and my listeners.

 

Alisa Weilerstein  30:23

Oh, my pleasure. Thank you so much for having me on your show.

 

Unknown Speaker  30:31

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  30:37

I will link up more information you've got here Elisa play. So I'll put a lot of that in the show notes, a couple of different links, including, you know, she mentioned that video where she was pregnant, I found that and she obviously looks great. But Josh, he plays with such passion in every video, I think you'll love it. So I'll definitely link those up. Whatever app you're listening to, if you're listening on an app, they always have show notes and you can often get the links there as well. But if you have any trouble as I always say just go back to the homepage and that will help you out. Tell me something good in just a moment. Did you hear the Dexcom at the Supreme Court we're going to talk about that. But first diabetes Connections is brought to you by g Bo hypo pen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's where Jeeva hypo pen comes in. It's the first auto injector to treat very low blood sugar. Jeeva hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies 99% of people were able to give Jiva correctly, I am so glad to have something new, find out more go to Diabetes connections.com and click on the G book logo. g book shouldn't be used in patients with pheochromocytoma or insulinoma visit Jeeva glucagon comm slash risk.

 

Didn't tell me something good. This week, let's talk about the Girl Scouts for a moment. This is all about Isabella. She was just diagnosed in April. And she is part of a Girl Scout troop. Her mom Carrie posted a photo and I wanted to talk to her about that it looked so great. And here's what happened. Isabella is part of a Girl Scout troop. And she did a presentation on diabetes for diabetes Awareness Month. But this went a little bit further than a lot of the presentations that we have seen. And Isabella let everybody or asked everybody to do a finger poke to experience a little bit of what she goes through. And I'm laughing because the photo that's posted and I'll see if I get permission to share this is Isabella poking an adult's finger, and the adult is looking a little apprehensive. But there's this little girl in the background who just is very concerned, she's got this look on her face. Like really? What do you have to do that all the time? You know, it's a wonderful picture to show the empathy, I think and really also, and this might sound a little bit flowery, but I mean, this the bravery of Isabella, it's not easy to show other people, all the stuff that you have to go through when you have type one. And you know, maybe her friends would be scared or maybe they would treat her differently to have the support that she has, I think is really special. So Carrie, thank you so much for sharing that. Isabella, congratulations to you for sharing all of that. And good on the Girl Scout troop. That's awesome. Our next Tell me something good comes from the highest court in the land. Last week, the Supreme Court heard arguments about the Affordable Care Act. This is the third time in eight years that the Obamacare as it's also known, has been in front of the Supreme Court. But what I want to focus on is Justice Sonia Sotomayor is Dexcom Yes, of course, many of you already know that. One of the justices lives with type 1 diabetes. If you haven't read her incredible biography. I will link that up in the show notes. And yes, she is one of my dream guests. So somebody helped make that happen for us. I reached out to the press office, I'm gonna continue to work it will get her on one of these days. But her Dexcom apparently went off crystal a prick. liano heard it. She is an incredible diabetes advocate. And she was the very first guest on this show. Yeah, back in 2015. And she tweeted out that she had heard it she thought it was her Dexcom going off, but it was Justice Sotomayor is and that sparked a little bit of conversation about why would it be going off as a clerk kind of bring her juice box? And is it frustrating that you can't silence all the alarms? And why would you want to silence all the alarms and it was interesting to hear people go back and forth about that. One thing that did come up if you do want to silence the alarms, and look, I know we want that urgent low to be going off, but you are grownups as you listen, and a lot of people do not want to blaring at their workplace or they want to have a different way of doing this. Right. We all want our DIY stuff. If you don't already know one workaround is to stick headphones into the jack on your phone and then the alarm will go off but it'll go off in the headphones and it won't bother anybody else at work. As a mom, I don't want you to turn your urgent low alarm off. I mean, come on. I'm a mom, but I get it. So that was one thing but came up. But isn't that interesting? I have all sorts of personal and prying questions for Justice Sotomayor. Maybe that's why she doesn't want to come on. And talk to me about, hey, where do you put your Dexcom? Do you use skin tack?

 

Unknown Speaker  35:12

We would have more important things to talk about. I

 

Unknown Speaker  35:13

am sure

 

Stacey Simms  35:14

if you haven't told me something good story, please send it my way. Stacy at Diabetes connections.com or posted in the Facebook group Diabetes Connections, the group. I feel like this month has been busier. And not just because it's diabetes Awareness Month. I'm actually I there's stuff going on. I'm doing panels. I'm taping things more than the podcast. So it's kind of fun. And I'm feeling more energized than I have been in a while, which is nice. This weekend. I'm participating in the healthy voices conference. This was supposed to be in the spring, I think we're supposed to be in Dallas. I mean, I can't even keep track of the number of airline tickets. I had to reschedule, like most of you. But I'm excited because I'm not just talking about diabetes. I'm actually not even talking about diabetes. I'm talking about podcasting. And I'm talking about teaching podcasting. And I will be teaching health advocates, patient leaders how to podcast and how easy it is, you know, not to be afraid of it, how their voices are so important, but truly, it's not an esoteric, you know why you should podcast or your voice matters, which it very much does. It is down and dirty. You plug this microphone into this program. Here's how you get your RSS feed on Apple. I'm thrilled to be doing this. And if as you listen, you know somebody who wants to hear more about that stuff. podcasting is obviously my passion and I love helping more people get started. As this episode airs. I believe it will be tonight, I am taping something that will be for air in December. It's the annual Wait, wait, don't poke me, which is a game show that I do for friends for life. It is a take off of the NPR show. Wait, wait, don't tell me. I love it so much. We have so much goofy fun, and you'll be able to hear that you'll be able to watch that, if not at the conference in December. Shortly thereafter, I'll make it public and we always have a good time. Please remember that all this month you can get the world's worst of diabetes mom real life stories of raising a child with Type One Diabetes for a big discount for dollars off at Diabetes connections.com use the promo code November, he makes a nice gift for the holidays. Boy, I'm so bad at this advertising stuff. But you can go ahead and read the reviews on Amazon. You can purchase it on Amazon as an audiobook or an E book or head over to my website and get the discount. And I forgot to mention if you buy it off my website, I'll sign it for you. There's a little form on the on the very bottom of the order form. When you fill it out. It'll say order notes and just put if you want me to personalize it, or anything you want me to write, assign them all but if you put it in there, I will personalize it for you. thank you as always to my editor john Buchanan from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  37:52

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Oct 27, 2020

 Meet Leo Brown from this season of The Amazing Race! He lives with diabetes, but his story isn’t a typical one. Leo was born with congenital hyperinsulinism, where the body makes too much insulin, and had almost his entire pancreas removed. Leo will share his unique story and tell us about running the race with his girlfriend, Alana.

Learn more about congenital hyperinsulinism

In Tell Me Something Good, babies! Weddings! And a football first for someone who’s been kicking t1d every day for a long time.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's new book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Episode Transcription:

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke Hypo Pen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:23

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:28

This week, meet Leo Brown, a contestant on this season of The Amazing Race who lives with diabetes. Now on the show, he's racing around the world with his girlfriend, Alana, but they had what could have been their biggest setback before the race even got started.

 

Leo Brown  0:42

I think I was actually on the flight to LA at the start line. When I realized I had left all my insulin at home. There was one thing I didn't remember it was in the fridge. It was lined up like little soldiers.

 

Stacey Simms  0:57

Oh my gosh. Well, Leo's story is not a typical diabetes one. He was born with congenital hyperinsulinism, where the body makes too much insulin and had almost his entire pancreas removed. He developed diabetes at age 19. And he'll share his unique story and tell us about the race

In tell me something good babies, weddings, and a football first for someone who's been kicking T one D every day for a long time. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. I love The Amazing Race. I started watching when I was pregnant with my daughter Lea. And that was 19 years ago, I realized that talking to Leo and doing this episode Oh my gosh. Anyway, welcome. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed almost 14 years ago, when he was a toddler. I have a background in broadcasting and that is how you get the podcast.

It has been two years since the last version of The Amazing Race aired and I really have been excited to see it come back. It's just great to see people traveling again. As soon as the first episode of the season aired in mid October, my eagle eyed diabetes friends started posting photos of Leo at one point he's playing the steel drums and you can clearly see the Dexcom on his stomach. I like many of you jumped to the conclusion that he lives with type one. But it turns out his diabetes story as I've already teased a bit is very unique. And we'll talk about that with him in just a moment.

But first Diabetes Connections is brought to you by One Drop. One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes. For people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, compact and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor's visit. Your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more.

My guest this week is Leo Brown from Season 32 of The Amazing Race. His partner on the race is Alana Folsom, they have been dating for less than a year when the show started. And they're now married. So we don't know how they did on the show. But that's a great outcome already. Leo and I recorded this interview over zoom and there is a video version which I've put on the YouTube channel. And that's just Diabetes Connections over on YouTube. But there's two things you need to know as you listen, the audio is a bit sketchy here and there, Leo and Alana upgraded their Wi Fi during the interview. Literally during the interview, she called and got the Wi Fi upgraded we stopped and started a bit before that happened. I took all of that stuff out. But you can hear some stuff here and there. And if you see the video, you will see the shirt that I am referring to as we start out here. But if you're only going to listen, I promise you will get the gist.

Leo, thank you so much for being here. I appreciate you spending some time with me tonight.

 

Leo Brown  4:23

Thanks for having me excited to have a chat.

 

Stacey Simms  4:26

All right. Well, first of all, I have to ask you about your shirt. Because I saw that hashtag on Twitter that you guys were using. What is beloved lovers? I wanted

 

Unknown Speaker  4:35

to hear you say it first.

 

Stacey Simms  4:37

Wait, let me do my radio voice! Tell me about – beloved lovers.

 

Leo Brown  4:41

Oh, absolutely. So Alana I got married over a month ago. And we have a Ketubah which is a Jewish wedding contract. And in a traditional Ketubah it says you know the man this and that husband this wife that right and We wanted our Ketubah to be egalitarian. And we didn't really see a need to indicate our gender. But that's not really what what relationship is about. And so we talked to our Rabbi who's extremely, you know, open minded and accommodating. And he came up with some text that is egalitarian. And the translation from Hebrew to English was beloved lover, and really like that. And so in the in the wedding, which we live streamed, because we couldn't invite most of the people we wanted to, because the COVID, he explained that and there was a live chat on the YouTube live stream that was happening, everyone was like, beloved lover, and then they started writing hashtag beloved lovers. And then I think somehow that got picked up by some news source that like follows Amazing Race, or it was like doing some promo about Amazing Race. And so when they were introducing the teams, and it was just this little this article that got that was going around, they said, Will and James dating Hung, and Chee married Leo and Alana lovers. And so our cast has all had already kind of decided since our wedding because they had all called into the wedding that we were having, like beloved lovers. And so we went with that. And this is our beloved lovers shirt on the back and says Leon & Alana, and a little globe, that is where beloved lovers came from our relationship and our wedding.

 

Stacey Simms  6:25

So okay, my husband and I have been married for 21 years. I'm making a note for our when we renew our vows for our tuba, maybe at 25. Oh, yeah, back and change the language

 

Leo Brown  6:35

as a couple that had to severely downsize our wedding. We are strong believers in renewing vows, or just having another wedding whenever you feel.

Stacey Simms

Well, you know, weird way you kind of put the honeymoon first with The Amazing Race. So let's talk about that. Because you both were I mean, I didn't know if I could ask you about your relationship, just because you're never sure on the show. I've seen I've watched the show for years and people are dating that they break up before the race even ends. Or maybe they stay together. Well, obviously, this had a really happy ending. But take us back to the beginning. When did you all decide to sign up for the race? You were just dating?

Leo Brown

Yep. So we met on Tinder in January of the year of the race. And then on our second date, I think we were watching The Amazing Race with my roommates at the time because they were fans and a lot. I was a fan and I hadn't seen an episode or two. And that was the first time when it was my roommates who said you better be great on the race. And I thought yeah, sure, I think we could be and, you know, nothing else really came of it. And then six months later, Ilana and I moved in together, I think it was our second night of living together when we had it. All right, let's make this video. Let's send it in. Let's see what happens. And that was in July. And then a couple weeks later, we got a call from casting. And then over the course of the summer and fall that we went to LA a couple times. And then the start line was our 10 month anniversary. So that was a that was a really fast and an incredible progression that we weren't expecting,

 

Stacey Simms  8:11

we will return to the Amazing Race to your relationship to your reading lots of questions there. But tell me about your experience with diabetes. Very unique. What happened? Tell us your story. Sure. So I

 

Leo Brown  8:23

can start long before I knew I had diabetes. Because I wasn't diagnosed with diabetes till I was 19. As an infant, though, I was diagnosed with congenital hyperinsulinism, which I always explain as kind of like the opposite of diabetes, instead of making not enough insulin, I made way too much. So it's a rare genetic condition that you're born with and usually presents at birth. And it's an emergency, once you're born, you have low low low blood sugars. And one of the biggest challenges is that doctors who delivered you and you know, like neonatal care doctors might not have ever heard of congenital hyperinsulinism. And to make matters worse, infants sometimes have low blood sugars, as like a natural and okay thing. And so many parents, including my own then are told initially some version of Oh, that's nothing really to worry about. And the story you hear time and time again from these congenital hyperinsulinism parents is I knew something was off like I'm not a medical professional, but my child needs help. And in my case, will that eventually led was to subtotal pancreatectomy ease. And so the first one was when I was six weeks old, and that was like 95% of my pancreas was removed a big scar across my stomach from that. And then when I was six months old, much of remained was also removed in a second subtotal pancreatectomy and after that, by the time I could remember, basically, I have like very early memories of my blood sugar being tested because my blood sugar was of interest at that point, everyone needed to know what it was and why it was okay. And for the first couple years, my parents had to do a lot to help manage that. And lots of doctors involved and try different drugs and eventually figured out something that could sort of stabilize my blood sugar and help me start to live a normal life. And by the time I could remember, I pretty much did live a normal life. You know, I went to kindergarten like any kid, I had a scar, I had a second scar from a feeding tube that was called my second belly button, because I have an outie. But then there was this any nearby. And as life went on, I felt very much like a normal kid who had this, you know, this complicated beginning, but I thought that was all kind of behind me.

 

Stacey Simms  10:56

But let me ask you before you go on, and I'm sure your parents have shared with you what actually happens when when a child is born with low blood sugar? Like you said, it's not as though something they're not often looking for that kind of thing. And it's extremely dangerous. Do they just are they poking your fingers when you're an infant? Or the you know what happened? Yeah,

 

Leo Brown  11:15

my parents may remember, even better memories than I do. But I know that you test a baby's blood sugar at, you know, most hospitals, good hospitals when they're born. So I mean, I think that tests This was 30 years ago. So longer, or like longer land sets, but generally a lot has remained the same in in that you test a baby's blood sugar. And if it's low, if you're lucky, someone says, Yeah, could be serious. It could be totally fine. But I think they had a lot of experience testing their tiny baby's blood sugar.

 

Stacey Simms  11:54

Did you go I guess my question is, did you go home? And then have these emergencies where you had to be re, you know, brought back your parents didn't know what's going on? Or did they know before they even left the hospital?

 

Right back to Leo, answering that question and explaining more about congenital hyperinsulinism. But first, Diabetes Connections is brought to you by Dexcom. It's hard to think of something that's changed our diabetes management as much as the Dexcom, share and follow apps. The amazing thing to me is how it's helped us talk less about diabetes, that's a wonderful thing about share and follow as a caregiver or parent, spouse, whatever, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom, follow separate follow app required, Learn more at Diabetes connections.com and click on the Dexcom logo. Now back to Leo, who by the way, has a great Dexcom story later on in the interview. Oh my goodness. But here, we are talking about his parent’s early days of his very scary diagnosis.

 

Leo Brown  13:04

I believe my parents didn't have a clear diagnosis before I was discharged at the very beginning. And then within weeks, if not days, I was brought back, you know, they said he's having, you know, he had a seizure. He's not getting better, like this low blood sugar thing is, is here to say and I I'm again, my parents would have a lot more to say. But at some point, they were equipped with a blood sugar testing kit to you know, check me regularly at home. But I think that within those first couple of days and weeks, they quickly discerned that something was off. My parents used to have this box and at some point I said I need the box because once in a while I need to be able to explain to people not in an interview, but in a doctor's office what exactly happened. But yeah, it you know, it from what I know congenital hyperinsulinism and other stories I've heard from other parents, honestly, that I can tell you as much about that as my own early early story. The prevailing pattern is that the parents are told that the low blood sugar is not something they need to really worry about, because babies have that sometimes. And right, a large part of what the community and an organization I'm working with congenital hyperinsulinism International is trying to help medical community understand is you need a checklist saying this could be congenital hyperinsulinism. Obviously research for early diagnosis, treatment, but early diagnosis is in some ways more important because if people aren't looking for it, then it is a you know, it's a very rapid escalation. As you can imagine. It's just like if you were getting injections of insulin that you didn't ask for.

 

Stacey Simms  14:54

Yeah, scary stuff. Yeah. So you have these operations. You're growing up just fine. But you have been told your family's been told that you will eventually most likely develop type one diabetes or something that's very similar.

 

Leo Brown  15:06

Actually, that didn't become what people were told until more recently, this, I think, has to do with better research and sort of documentation about the progression of the disease also, as early treatments have become more effective, and there's still a long way to go there. I'm you know, most people don't get to go to kindergarten like I did without some sort of special needs. Or even just like having a continuous glucose monitor, right? You might not be I mentioned special needs, because like, as soon as your blood sugars are low, you could have that could affect your brain in some way. But also, even if you don't have that consequence of the low blood sugars, you might still have a lot of trouble controlling your blood sugar's early in life or throughout your life. And so the fact that I didn't have any of that, from nursery school, kindergarten and on through the beginning of college is sort of unusual. But to your question, my parents were not told that I would get diabetes, part of the reason, I think is because my pancreas was making so much insulin, there was a thought that removing just the right amount would lead to me being just fine. Or, you know, you might not remove enough like, I might still have low blood sugars, like there was no assumption that I would have diabetes, although my understanding is more recently, that's become more of a an assumption that like you do this type of operation. And then no one knows when, but eventually you will have diabetes,

 

Stacey Simms  16:38

or and now I have one more dumb question or the surgery for we move on. I know, everybody wants to know about you, and the Dexcom and The Amazing Race, right. But I'm so curious, we think about the pancreas, and I think most people in the diabetes community understands that it's not dead, you know, it didn't stop doing everything it's supposed to do. But we don't think about it as doing anything much more than producing insulin, you have like this much of a pancreas left, and you have been living this happy, healthy life, even though we're gonna talk about your diagnosis. Are people generally surprised when they hear that it's, it's more of an education for you to do? Because I gotta tell you, when you told me that, I thought that's not at all what I felt what happened?

 

Leo Brown  17:13

Yeah, I wish I could read the logs of my pancreas to tell you exactly what it's doing and what it's failing to do, like if you were trying to debug it. And, you know, there's not an easy way of getting in there. And and finding that information. I mean, you really would have to, you know, I engage any doctors I encounter and try to get those kinds of answers out of them. Like, what is it that my pancreas is not doing? Like, I know, it produces all sorts of hormones, other than insulin, I don't have the background to even ask the right questions, right. But all I can say is that with a little bit of pancreas, you can get a little bit of function. And I guess enough such that I don't I'm not diagnosed with anything other than diabetes. But it is a great question. And there's not a ton of patients to do this research on. Nor is it something that you'd want to interfere with someone's life to do research on, like, you were to poke around in there, like you could cause a problem. So on some level, you kind of just keep an eye on it. But one thing I do quickly want to add is that my parents and I, after I was diagnosed with diabetes, we were really kind of kicking ourselves like, doesn't it make sense? You took my pancreas out? Why didn't anyone mentioned that? This could just it seems like common sense. I mean, not I'd never thought about diabetes before. But my parents had certainly thought a lot about blood sugar. And they were like, course, like diabetes?

 

Stacey Simms  18:43

Nah, I gotta say, in everybody's defense, I think I would just be very happy that my baby who was going super low, all of a sudden, they figured out was wrong. They fixed it. You went to kindergarten, if the doctors aren't telling you why we're going to

 

Leo Brown  18:57

we think, clear. And you know, we weren't testing my blood sugar after I was, you know, in first or second grade, like and, and there's no indication that there was any need to at that time, no symptoms. Yeah.

 

Stacey Simms  19:10

So what happened? Did you go to college and start having issues or did it come suddenly. So

 

Leo Brown  19:14

I went to college, I look back and I wonder when the symptoms really began. But by the time I was diagnosed, I was working. I was with summer after my freshman year, I was working at like a family run vegetable farm in the Berkshires in Western Mass where I was in college. And I thought I was you know, I'm a pretty fit person. I'm not a college athlete. And I was with a couple of college athletes on on this farm. And so that was what made me kind of doubt that will maybe I'm not cut out for this. But long story short, I couldn't really make it through the day. There was a moment I remember where I was trying to get into the pickup truck that we were driving around, and I could get in but I had to like I would just like go put my hands on the wheel and just use my arms to just like, drag myself into the pickup truck. And that was odd. I'm not used to having that much trouble with something that seems simple. Why wasn't I using my legs? Right? I probably was, but it was I wasn't using my body the way I normally would. And then I also, again, no surprise to the community, I had to pee all the time. These guys I was working with were thinking like, what's wrong with Leo, like, all he does is go to the bathroom. And he's not very good at any of this manual labor. And I was starting to think maybe I just am sickly. I'm just someone who is not as fit and capable as I thought I was. You know, I'm not one of these college athletes. So who knows.

So I went home for a couple weeks, I said it was a vacation, you know, I'd kind of plan to take two weeks off at some point in the summer anyway, I was at my girlfriend's house at the time hanging out with her and her family, just in the living room, really low key, like someone was watching TV, someone's reading the newspaper, we might have been playing board game, and I was just lying on the floor, basically, I would only get up to go to the kitchen and get like a tall glass of milk. And I think I went through an entire gallon of milk. And then I you know, I was like super comfortable in this environment. So I wasn't pretending to feel any better than I was. But I also wasn't, I wasn't unhappy. I just had no energy. I was like, I was completely down for the count. And her mom is a scientist. And she said, You're not well, and you should go to the doctor, you should go home and go to the doctor. And I did and they tested my blood sugar. And it was 650. And so that was you know, right away, they put me on insulin. And skipping forward a bit. I went back to the farm Two weeks later. And they were astonished by like, I'd gained 20 pounds back. I had an I could do stuff. Do you remember how different you felt? Once I was on insulin right away? I had, yeah, like 10 times the energy, things felt easy, I think is the biggest thing. Like I wasn't unhappy. I just was confused by why I couldn't do what the type of thing that I thought I would be able to do. And again, I'm not. I don't think of myself as physically fit first and foremost. So in the back of my mind, I was always thinking maybe I'm not as fit as I thought I was versus an athlete, student or professional, who would sort of automatically know my performance is going down like something's wrong. I didn't think that.

 

Stacey Simms  22:33

All right, well, that's a fun way to start talking about the amazing race. Because I have been watching this show for I realized recently 19 years. And I've always thought, oh, that'd be so fun to do. And then I remember each season, why would never succeed, because the athletic ability you need just to survive and run from place to place is unbelievable. So I have lots of questions from listeners. I have lots of my own questions about the race. But the really the biggest one we get is, you know, how do you manage diabetes in a situation like that with travel and running? So if we can ask, we all saw you with the Dexcom while you're playing his steel drums and episode one that got everybody's attention and diabetes,

 

Leo Brown  23:12

even I didn't notice that in the clip.

 

Stacey Simms  23:15

Do you do if you don't mind it? Again, this is kind of personal. Do you take insulin pens? Do you use a pump anything like that? Yeah,

 

Leo Brown  23:21

I've tried different things over the years. And again, because my diabetes isn't type one or type two, it's hard to sort of draw comparisons. But the number one thing I do to manage my diabetes is through diet. So I eat a very low carb diet. And that is something I've always tried to do as much as I can have over the years. And at times that's enabled me actually to get off of insulin. However, there are so many variables. And on the race, I was not on regular insulin prior to the race, but I brought insulin on the race and had to use it in particular, because I would encounter food situations that I would not have chosen. And I also just didn't know what I was going to encounter. And that was also why I had the Dexcom, which I had. Well, I shouldn't say that's why I had the Dexcom. I've been using the Dexcom for some time. And that is also part of what has enabled me to kind of use insulin as I need it more recently, just to provide a little bit of context. When I was diagnosed, I did use Lantus and homologue, kind of a traditional prescription of insulin, as I discovered that I could use less insulin, if I ate fewer carbs, I over time would sort of rebalance my insulin with my diet. There are times that I wasn't using the insulin that I should have been. And I would sort of tell myself that I didn't need it. And if I didn't test my blood sugar, then I couldn't prove that I needed it. And then more recently, since the race and I'm not sure if this is you know an age thing or like an age pancreas thing, I have found that it's sort of floating higher Even with like, when I'm sure I'm, and legitimately, perfectly executing a low carb diet, and it's higher than I would have, you know, not high like 121 3140. Like, I wouldn't see the numbers like that if I had everything else controlled, and yet, somehow I do. But then if I start running more frequently, it kind of goes back down. So there's all these variables.

And for the race, when there's so much that I can't control, I knew the Dexcom would be a CGM in general would be crucial. And having insulin available would be crucial. So I didn't want to go with an omni pod, because I got a couple of infections, actually, from the site, not saying that Omnipod, but just in general, like, I don't have a ton of body fat. And so like, I think there was just the wrong spot. And that can happen with any device. But for the race, I really want to do avoid that kind of thing. That's the sort of thing that could have actually put me out of the race, you know, if I had like a real infection, and so what I ended up bringing on the race was syringes, like old fashioned syringes with a vial of human slug. And the reason I went that route, actually, is because oh, no, I actually think that was just all I had at the time, because I had the syringes around for the token like a true diabetic. Yeah, I had the syringes and they were around from the Omnipod.

And then I have to include this, which I had forgotten about, but we were at the hotel ready to go, you know, we're not sure when this starts going to be. And I think I was actually on the flight to LA at the start line. When I realized I had left all my insulin at home. There's one thing I didn't remember, it was in the fridge, it was lined up like little soldiers. So there was a whole production of gold, having someone having a production assistant go to Walgreens, like paying out of pocket, months later figuring out reimbursement. So that was it was a major part of preparing for the race.

 

Stacey Simms  27:05

Okay, I have to tell you, I have so many friends with so many stories of forgetting insulin and for getting supplies you have just made our day. So thank you for acknowledging that you're human. Oh, yeah, that's crazy. Oh, you went over here. So the other question was, this question kind of comes from the food? I thought I knew the answer this after all the years, but I wasn't sure. How do they feed you on the race? We see the crazy food contests. What are you eating day to day? And then the question was, how did you manage that?

 

Leo Brown  27:31

Yep. So I only ate in between legs. Mainly because I didn't want the distraction the production, the possible possibility of a higher low blood sugar during legs. Now keep in mind, I was not using a basal insulin at this point. And so I didn't really need to worry about my blood sugar floating low unless I had a short acting insulin in my system. And with the adrenaline happening during the race, I did not feel the need to be eating. And then in between legs, teams stay in a hotel, the race provides food. I'm being a little careful, because we're not supposed to talk too much about behind the scenes stuff. But what I'll say is that, you know, the food I would ask for I would eat what I could have it. And if I needed more, I would ask for more. That brings me to the topic of what I generally which is if you gave me a slice of pizza, I would eat only the top. In fact, that's a business idea that one of the other teams and I the blondes and I want to start pizza tops. I know we haven't made any progress on that. But like pizza tops, very delicious. Sometimes you can even find someone who's lactose intolerant, and you split the slice of pizza horizontally. So that's the kind of food strategy or trick I would use. There was food available to all the teams and sometimes I would have to ask for a little bit more to make sure that I can eat enough. Okay,

 

Stacey Simms  28:57

I am a Jewish mother. You were not super hungry during the race. I mean, again, I know we can't we have to be very careful. We don't know how far you got. We know you've got through episode one. But I'm thinking even an episode when you were swimming. You were running around or playing the drums. It's a long day. We don't have to eat a whole lot of adrenaline.

 

Leo Brown  29:16

And I you know, I always had a bar. I always had sugar tablets with me. So I should point that out. But you know, your heart's racing. You're competitive. Your adrenaline's high. And on that note, you're probably going to ask me about this. My blood sugar went high from that. Yeah, right. So like my blood sugar shoots up when I play coed softball in a league, you know, that I pay to be here. Right? Like it's not a competitive situation. But like, you know, The pitcher winds up. I'm at third base and like my heart's racing, and then I look at my Dexcom later and my but the first time this started happening, I was so confused. I know. I didn't eat anything like and yeah, so that happened a ton during the race to the point where I didn't Security actually said the security staff was who was really tasked with sort of keeping an eye on me from a medical perspective. And they, they would say, like, you can't let your blood sugar get that high. And I would say, well, like, Yeah. Like, what? Also what do you want me to do take insulin? Like, I don't think you want that. It'll go back down pretty quickly when I calm down, but right now, yeah, like, I've always found it's not worth trying to treat the adrenaline highs, because then I don't really under like, I can't do the same calculation around eating something like, How high is it gonna go? How excited was I? Like, how long will it last? Honestly, I've thought about trying to control that sort of thing through mindfulness, or meditation and sort of just like slowing down my adrenaline in general, although I don't want to change who I am as a person and you know, being hated about things. So that's a trade off, I guess.

 

Stacey Simms  30:55

Yeah, I think adrenaline highs from sports is just something that most people with diabetes that I know learn to figure out and kind of work around and not dose for, as I said, because you it's it's so tricky tolerate, um, time zones came up, too. But since you're not dosing basal insulin, that's not really a question, right? I mean, time zones, I assumed would affect you, but not really in the same way as someone was dancing that way. What

 

Leo Brown  31:17

Yeah, I didn't go space all during the race. And I think time zones affected all of us in an odd way. But, you know, we weren't sleeping in 24 hour cycles, we were sleeping during breaks between the legs, and the legs were not, you know, they didn't start when the sun came up, and when the sun went down, so yeah, I don't know. I mean, I think if I had been dosing basal, I would have had to just, you know, set a timer and decide that's when the next day began.

 

Stacey Simms  31:46

All right, any tricks and tips to keep your Dexcom on? Did it stay on in the water? Did it stay on with the sweat? And the reason the whole thing? That was what I was thinking about?

 

Leo Brown  31:54

Yeah, incredibly, it did. Since the race, I've gotten more experience with using the Dexcom and have started to use three M tape. And at this point, I just put it on preemptively. And aggressively. So it's like all over the site. I was, I think, kind of lucky during the race, the biggest issue I had with a Dexcom. And this gives you some insight into like the level of excitement and my state of mind was, at one point, we were on an airplane, and I was checking my blood sugar on, I actually was using, not my phone, but the little device that it comes with, because we didn't have our phones. So I was fiddling around with this device. And my mind's racing a mile a minute, right, like probably the entire race. I mean, to like, say, exit out of the part of the app that I'm in. And I decommission the sensor. Oh, no. Unlike the I was installing the sensor, no, I installed the sensor. And then I said the sensor is over right. Now, it is not possible to reverse that. And I was so distraught. And olana pointed out at that moment, that I had brought four sensors for 30 days, because I brought an extra and that was when I used the extra. At that point. I didn't have an extra. But at least I had that one. That was like, I don't know if there was a moment in the race when I was more horrified then when I installed Dexcom and then immediately decommissioned it.

 

Stacey Simms  33:32

Oh my gosh, yeah. I think a lot of us have done that. You guys were very early in your relationship, as you said. Very brave thing to do. exciting thing to do. Did you have fun? I mean, you're married.

 

Leo Brown  33:44

Yeah, we had a lot of fun on the race. It was also I will say a very stressful experience in general. You know, our first time on TV, you know, we really wanted to keep racing. You might have noticed in the first episode, we were on the second flight, we were in 10th place at a certain point, the oil drums were huge and hard to handle. The fish numbers challenge was horrible. Try remembering for numbers and the numbers were okay. But the colors. The problem with the colors is that what are you reading the fish nose to tail left to right, like you flip it over upside down? Right? It's sort of like you can reverse the fish in all different directions. And we were just like, really, things were not getting any easier. And then the skill drum challenge Fortunately, I felt pretty comfortable with so that was Trinidad and Tobago, and we had a blast, but we also had a lot of anxiety. You know, as far as our relationship, I think we kind of knew what we were getting into, in a way. I mean, I suppose it was more intense in many ways than you could have imagined. But we knew we wanted to do this big adventure like we knew it was a once in a lifetime opportunity. We wanted to travel we wanted to get to know each other. We wanted to get away from our jobs like It was a no brainer. And I think that our relationship from day one has always been that we want to do things together, and not like shy away from experiences. And we're just both wanting the same thing out of life in so many ways. And so it would have been against our nature to hesitate to do this thing together.

 

Stacey Simms  35:20

So this was taped in 2018. This is pre COVID. But this is a long time ago. How hard is it been? I mean, I don't know exactly when it wrapped up, or if you know, when it ramped up production. But how hard has it been for you guys to sit on this for all this time? You can't say anything?

 

Leo Brown  35:35

Yeah, it's been a big secret. And it's been a huge relief to share. We were able to share with close family, initially, MBAs, everything we couldn't share with work, we couldn't share with friends, we couldn't share it, my friend who was house sitting for us. And we have been able to stay in touch with the cast. We're really close with the rest of the cast. The fact that it took so long to air is I think part of that, like we've had a chance to see each other go through stages of life together. A couple of them were at our wedding, everyone else was live streamed into the wedding. So having the cast as sort of a support system through this has been really huge. It's just a Yeah, it's a huge relief to be able to share that. That's unbelievable. And I have to say, just watching the first episode, and I haven't watched the show in a few years. And now I'm back in I'm very excited. Good. But it was a joy. Great season. Well, I'm glad to hear it. But I gotta tell you, it was a joy to see travel. It was exciting to see the world again. escapist is voyeuristic. Yeah, it's, it's what we need right now. Of course, being able to see myself through those things is a trip and feel so great. But also, you know, just being able to see people interacting, like we used to, I'm sure there's going to be some airplane footage. The first episode was notably absent airplane footage, which I think everyone was sort of would you know, that's what you want to see right now is like everyone like squeezing onto a plane. But there will be some of that the carnival in Trinidad. Imagine, you know that today? You want to see that back to the way it was, when it can be. But yeah, I do think it's the perfect show to be airing at this time, unlike Big Brother, where you're locked in a house. And it's kind of the same as you know, you get everyone tested, and then you can be in the house. But the race is obviously the opposite. And we are we're all hoping they'll be able to you know, keep running it again soon. You know,

 

Stacey Simms  37:39

I I would like to know, and I, again, I've watched the show for 19 years, you know, what's the crew? Like? What's it like traveling with those other people that we never see?

 

Leo Brown  37:48

Yeah, first of all, the crew is many in number. And they're an integral part of the experience. They are supportive. They're excited to be there. They do incredible physical things with you know, 50 pounds of equipment, trying to keep up with us. We're trying to go as fast as we can. And then they're, you know, jogging alongside us. They haven't a job that is would have been hard to imagine. I mean, now I've kind of seen them do it. But you know, they travel around the world. A lot of them work on other shows. Some of them have been doing the race since the beginning. And now we follow a bunch of them on Instagram, and they all post great photos of their non office jobs. Like to them

 

Stacey Simms  38:28

you've got the goats, right, and you're running to the mat. Where are they? They're behind you. They're in front of you. They're trying not to get trampled by goats. I mean, it's got to be an incredible skill on their part to

 

Leo Brown  38:37

Yeah, so also keep in mind that there's equipment like drones that they can deploy. So generally speaking, 90% of the footage, I would think is from a person carrying a gigantic camera, just running around. But if you think about like the water challenges, actually, I think they've had cameras on boats, you know, I probably shouldn't get too into that. You'd probably just do drones. Yeah, sometimes it's

 

Stacey Simms  39:06

drones. And what's Phil like, Phil is nice. Don't tell me if Phil isn’t nice.

 

Leo Brown  39:10

No, feels great. Phil is just like he is on the show. Except if anything quicker wittier than you might expect, like none of it's scripted. As far as I know. He's really fun, really warm, and he wants us to do our best. You know, one thing I did want to ask before I let you go, I found you on Twitter because someone in the diabetes community was talking directly to you and saying, Hey, we watched the show. My daughter just got to Jack's calm and saw you with yours on TV and it made our night. You are while of unusual case in the diabetes community. You are in the community now. And I'm curious what that's like for you. When you see people reacting so positively and so excited to see you on the show. I was definitely surprised that people picked up on it right away.

You know, I didn't see the Dexcom in the episode. And it's an incredible feeling to have that be an inspiration for people. And I know how I felt when I was first diagnosed with diabetes. And I didn't know what I would be able to do, it took me some time to realize that I wasn't going to get a break from it. And to kind of there's the diagnosis, which was a relief, actually, because then I could do things that I wanted to be doing and thought I could be doing, I just, you know, they told me, I just have to do this and that, and then I can live my life. And then it was probably a couple months later, where it sort of hit me that, you know, I wouldn't be able to go back to the way it was before. And I remember my sister who's a couple years older, she was watching this happen. And I was a freshman in college, I just finished up freshman year of college. And I had to I realized, and especially because I was making such an effort to manage with diet, I realized like, I wouldn't be eating birthday cake, I wouldn't be eating a hot dog button. And the way she saw it was that I had to grow up really fast, because I have a sweet tooth. Like I love candy. And I don't eat cake. I mean, I eat dark, dark chocolate, but I don't eat candy. And oh, what I'm about to go make for myself after this interview is a hot chocolate, which is made of half and half and cocoa powder, no sugar, and I mix it together and I heat it up in a saucepan. And it gets like to be to me indistinguishable from like a chocolate syrup that I want to drink. But it's got no sugar. So I recommend that. Anyhow, I'm on a tangent. It's really exciting to me to be able to hopefully, give people who were in my shoes. I think the person who commented that was her daughter's first couple days with Dexcom. So I remember what that was like. And on one hand being really hopeful that I had a solution for myself. But on the other hand, accepting that, you know, there were real compromises. The solution was not one that I was always going to love. But for the race, those are solutions that helped me run the race. Yeah.

 

Stacey Simms  42:13

Well, I can't thank you enough for jumping on so quickly for sharing your story. And for being so open about everything. And thanks for hanging through the technical stuff, too. I appreciate.

 

Leo Brown  42:24

I think we got a lot I got us a Wi Fi upgrade in the course of this interview. So she's she's busy. Behind the Scenes love it.

 

Stacey Simms  42:32

Yeah, I appreciate you doing that so much. So look, we'll check in. We'll see how it goes. And maybe we'll follow up. But thanks again for spending so much time with me. Okay,

 

Leo Brown  42:42

thanks a lot, Stacey.

 

Announcer  42:49

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  42:55

More information on the foundation that Leo talked about. I will also link up stuff on hyperinsulinism. If you'd like to learn more, all of that at Diabetes connections.com. Click on the episode homepage where there is also a transcription and I'll put a link into the amazing race because they've got some cute behind the scenes videos each week. And oh my gosh, I hope they win. You know as we're taping this, the second episode hasn't even aired yet. So I don't know if they've made it to the third episode. And but you know how this works. You've been with me with other contestants. We've had people from the Titan games and from the baking shows the Food Network kids baking show, American Ninja Warrior, you know, the Christmas light. We've had people from all different reality shows and you never know but it's always great to talk to them and just making it to the show is a pretty incredible achievement way. I hope they went Tell me something good coming up in just a moment.

But first diabetes Connections is brought to you by Gvoke Hypo Penn and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's where GMO hypo pen comes in. It's the first auto injector to treat very low blood sugar Gvoke Hypo Pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies 99% of people were able to give Gvoke correctly. I'm so glad to have something new. Find out more go to Diabetes connections.com and click on the Gvoke logo Gvoke should not be used in patients with pheochromocytoma or insulinoma visit Jeeva glucagon.com slash risk.

 

Tell me something good. This peak is full of weddings and babies and celebrations. Congratulations to so many people in the community who took a big step this month. Rob Howe got married in early October so congratulations to Rob and to Erica. Rob is the founder of diabetics doing things the host of that podcast and and so much more. It is Rob that he's my Instagram guru, but I'm so bad at Instagram. I once I think I once was it Rob I once called him through Facebook messaging or Instagram messaging, I don't even know. I don't know how I did it. He was so polite. He was so nice. I felt like I was 75 years old. It was, it was not great. But congratulations to rob and Erica, who had a beautiful backyard wedding, you know, as we have to do these days, we wish them many years of health and happiness.

Congratulations to Patrick Mertes, who had a baby with his beautiful wife, Patrick is one half of the team that made up 50 and 50. And these two guys who decided to go around the country last year, and climb the highest peak in all 50 states and try to do that in 50 days. And Patrick completed it Michael, his partner had an injury, halfway through and completed it. But later on, they did something else recently called race along the trace, which was three states. And 460 miles, it looks like a bike ride. He called it the last hurrah before fatherhood. So we'll we'll catch up with him and talk about that. But Patrick is also the director of the diabetes camp where my son goes every summer. So we are excited to see how a camp guy tackles fatherhood, I'm sure he's gonna do an amazing job because he's corralled all those kids for all those years.

And finally, congratulations to Ken Rodenheiser, who also had a baby in October. He's a pediatric CDE in Philadelphia, and I think it's at the hospital where he himself was diagnosed years ago. But he has been a very big part of the children with diabetes organization and the friends for life conference. I believe he leads the tween program there, Ken and I have gone back and forth for years about getting him on the show. And we will work it out very soon. But I just wanted to highlight him in this segment and say congratulations to him and his wife and their babies name is Elliot, this adorable little girl.

And I just realized as I'm reading this, I didn't put two and two together. But my next Tell me something good is also an Elliott. But this is Elliott Fry. He is the former kicker and all time leading scorer for the University of South Carolina, he lives with type one. And earlier this month, he kicked his first field goal in the NFL for the Atlanta Falcons in the Carolinas. Elliott is very well known for working with kids for being really out front with JDRF. And just being you know, out there as a great role model and example of somebody who plays sports and plays them at the highest level with type one. So it was really exciting to see him get that very first field goal in the NFL. And that's Tell me something good.

Do you have something for me send it my way, Stacey at Diabetes connections.com. You can also post in the Facebook group, you don't have to have a baby or get married. It can be as easy as your son or daughter did their first sight change, without crying and running away oh my goodness, that used to be such an ordeal with Benny, anything that feels momentous anything you want to celebrate with the diabetes community, I would really love to know about you can go ahead and tell me something good.

 

It's hard to believe that it's going to be November in a couple of days. And I know we're all stressed out about the election and the possible aftermath. But it's also diabetes Awareness Month. And I don't know how that's gonna get any play this year with everything else that's going on in the world. But I'm gonna try and I always say diabetes Awareness Month is for the non diabetes community. I mean, we're aware every day of the year, this is our chance to educate. So I have a few things in mind to try to get the word out in other media. And I won't be talking so much about that here. But I'll share if anything exciting happens. But I am going to be doing two different things. If you're on Instagram, I will be having a contest I'm probably gonna start that the second week of November because I want to get past this election to that's just going to be a fun giveaway, to celebrate each other to be part of diabetes awareness. It's going to be fun and easy. I have some great companies lined up already that want to donate stuff and give it to you. I mean, you work hard all year round. Let's celebrate a little bit.

And we have a big episode milestone, the numbers I'm so excited to share this with you. The second one is going to be on Facebook only. So we're going to have an Instagram only and a Facebook only. And the Facebook is going to be a little bit more work on your part. But the prize is going to be bigger, that one's going to be a cash prize. So I will keep you posted. The best way to keep track is to be in the Facebook group. Or to subscribe to the newsletter. If you're not already subscribed to go to Diabetes connections.com the cute little please sign up should pop up. But if it doesn't just scroll all the way to the bottom and you can sign up for the newsletter right there. So two contests coming up. I want to make it easy for you. I think it's gonna be fun. We just need a little brightness around here. And I hope I can provide some of that.

All right thank you to my editor John Bukenas from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  49:46

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Aug 11, 2020

The Baby-Sitters Club comes to Netflix! The beloved series features a character who lives with type 1 diabetes. How did the show do portraying life for a 7th grader with T1D? We talk to New York Times Bestselling author and winner of the National Book Award Robin Benway. Robin loved the books as a child and was diagnosed with type 1 as an adult.

Also this week, Mike Suarez turned his son’s story into an adorable picture book called Year One with Type One

Join the Diabetes Connections Facebook Group!

In Tell Me Something Good – she had a huge goal for the JDRF rides this year – of course so much had to be cancelled this year but her story took a wonderful turn.. on and off the bike.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's new book: The World's Worst Diabetes Mom!

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Episode transcription:

Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first pre mixed autoinjector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

Announcer 0:22
This is Diabetes Connections with Stacey Simms.

Stacey Simms 0:28
This week, it's all about books and a TV show that's based on books. We're talking about the Baby-Sitters Club with a New York Times bestselling author who loved the series as a child and was diagnosed with type one as an adult.

Robin Benway 0:43
Oh my gosh, I'm now something that I was a fan of for so long. I can now watch on television. You know, I was thinking about Stacey when I did start to watch it. I thought it was nearly perfect.

Stacey Simms 0:54
Robin Benway is the winner of the National Book Award when we talk about Stacey and the babies sitters club, what we liked what we didn't, and about diabetes in media. Plus a dad turns his toddler story into an adorable picture book about type one.
in Tell me something good. She had a huge goal for the JDRF rides this year, of course, so much had to be cancelled and changed. But this woman's story took a wonderful turn on and off the bike. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I'm so glad to have you along. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, gosh, ages ago now he was almost two and in December it will be 14 years. Yeah, he's 15 and a half 15. And more than that, I don't even know anymore. My husband lives with type two diabetes. I do not have diabetes, but I have a background in broadcasting and that is how you get the podcast which we've been doing now. for more than five years,
and I have been wanting to talk about the Baby-Sitters Club for a long time, I mean, we have talked about it because many guests over the years have said that it was very influential to them, either. They read it and really were touched by Stacey's story, the character who lives with type one, or somebody else read it and diagnose them because of it. That happened at least once to one of my guests. It's really incredible to think about these books, and the impact they've had on our community. So when I saw column in Elle magazine recently, about the Netflix adaptation, I really wanted to talk to Robin Benway, the author, I knew she'd be fun to talk to just by her writing voice in the magazine, and she really was and Robin also had some unique insight about the books and about the adaptation, and I was really excited to talk to her. We also talked about diabetes in other media, you know, I think a lot of us cringe when we know there's going to be a depiction of diabetes and a show or they mentioned insulin and we Oh, we know what's coming. So it was fun to talk to Robin about that. And to kind of spotlight some good stuff that's actually out there.
All right, I'm going to talk about my reaction in more depth to Baby-Sitters Club in a little bit of a review, but I'm going to do that later on. Because this is a longer episode. We've got two interviews, we've got Robin. And I also spoke to a dad who wrote a picture book rhyming kids book for about his little boy, and it's called year one with type one, and that is with Mike Suarez. So that's coming up in just a bit but first, diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop was really impressed at how much they get diabetes. It makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required there. Beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to Diabetes, Connections comm and click on the One Drop logo.
My guest this week is a National Book Award winner and a New York Times best selling author. She wrote a column about the Baby-Sitters Club and her reaction to it in Elle magazine. That's what caught my eye. I reached out and said, Would you talk to us but to come on the show? She said sure. And we had a great conversation. Now she grew up with a father who lived with Type One Diabetes, but she herself was not diagnosed until she was an adult. So her perspective on the Baby-Sitters Club, which she loved, as you'll hear as a kid was very different because she wasn't relating to the type one aspect about it right away. I'm also curious to know what you thought of the Baby-Sitters Club. I'm going to be putting more about this in the Facebook group. We've talked about it a little bit, but we'll put more posts in there and get your take. And as I said earlier, I'm going to put a little bit more of my review, although you'll you'll hear much of it in the interview. But a little bit more later on. Here is my talk with Robin Benway.
Robin, thank you so much for jumping on to talk about this. I really appreciate it. It's I'm looking forward to talking with you. Yeah, same here. Thank you so much for having me. All right before we jump into the Baby-Sitters Club, and I have a lot to talk about with that. Let me ask you just the basics. You were diagnosed as a young adult, right you were in your in your mid 20s?

Robin Benway 5:28
Yes, I was 26 it was July of 2003. I was diagnosed I was diagnosed with celiac disease at the same time I was having really low iron problems I was having anemia so they started doing a lot of bloodwork just to find out what was going on and started noticing that I had elevated blood sugar levels. And my father, who was my biological father was also a type one diabetic. So once they saw those blood sugar levels being elevated, they started to put things together pretty quickly. And so I in a, you know, a very strange way felt very lucky that I was diagnosed that way that it didn't progress to the point where I had to be hospitalized or my blood sugar's were, you know, four or five 600 or something like that, that I was diagnosed sort of accidentally and was able to catch it pretty early and could start, you know, meeting with an endocrinologist and started taking insulin pretty soon after that. So there was no mistaking at that age, oh, maybe it's type two, maybe it's something else because of your father, they pretty much went right there. At first, they were like, maybe it's type two. There was a lot of I think, you know, this was 17 years ago. So I think now, the way that people are diagnosing type one and people in their 20s and 30s is very different than it was 17 years ago. I think that was when people were just starting to see that, at least based on my experience and the responses that I was getting from doctors at the time. You know, I had grown up knowing that my dad was diabetic, but in our family, we had always sort of been under the impression that once you hit 12 or 13 years old, you're sort of out of the woods of that, you know, I think a lot of they used to call juvenile demise you know, because they were diagnosis of young. So I think it was a real shock because I had always thought, okay, I'm out of the woods. I'm fine. And that wasn't the case. But they definitely did think it was type two. They started me on oral medications at first Metformin, but nothing worked. And I remember I still remember the first time I took insulin, it was just like, oh, that was the problem. You know, that's what I need because my blood sugar's just came down to right where they should be. So, you know, it was a little disheartening knowing that I was going to have to go on insulin, but at the same time, that relief of knowing that now here's the drug that works was it balanced it out?

Stacey Simms 7:36
Do you remember I've been told this by other adults that I've talked to that what that first dose of insulin feels like, Do you remember that?

Robin Benway 7:44
I do. Remember, I was staying at my mom's house. I was living alone at the time and I thought I don't want to be alone when I take my first dose of insulin just in case. And I remember it dropped. My blood sugar's a little lower. They were like maybe in the mid 60s, and I just remember, I didn't feel shaky but I just remember feeling less. It's that feeling of a sugar rush basically, you know when your blood sugars are high I for me personally, I definitely feel a little agitated, a little edgy, you know a little bit more, I don't know Piper's the word but just a little fuzzier. And I just remember that feeling going away. And I remember also being so terrified of like having to give myself an injection like having to give myself a shot. And I was incredibly amazed at how easy it was and how painless it was. I had always imagined that it would just be a torturous experience, you know, mostly because your experience with injections is like vaccinations or inoculations. You know, it's Earth flu shot. It's a very different experience. Give yourself a shot of insulin. And I remember feeling that relief also of Oh, I can do this. Okay, this is something that I can do. Wow. Yeah. So

Stacey Simms 8:50
the article that I'd mentioned, you start out by talking about this high spot in your career, the National Book Awards Gala and then the reality of being an adult with type one, which is go to the bathroom, I get up your formal gown, you know, giving an injection. And, you know, certainly a great way to start the article. But I'm curious, do you share your diabetes experiences with your friends and family? I mean, not everybody has to be giving themselves injections at the table. Right? I know. I'm sure you're not hiding things. I don't mean to imply that. Oh, as a mom, that was the first thing I thought of was, oh, my goodness in the bathroom. She okay. Yeah.

Robin Benway 9:29
You know, I obviously all of my friends and family know about it. I'm not someone who would ever conceal that part of me. It's not something that I ever feel ashamed of, or feel like I need to keep secret. That's certainly not it at all. I think. For me, it's more about I'm very conscientious of other people's reactions to blood and to syringes or needles, and I just don't want to ever make someone I definitely have known people and I've heard of people who just give themselves an injection right at the table, you know, or will check their blood sugar under the table. And for me, I'm just not comfortable. That just in terms of making other people uncomfortable, but also sometimes things go wrong, you know, like, sometimes, you know, there's a little bit more blood than you thought there would be or you hit a blood vessel when you're injecting yourself with insulin. And, you know, sometimes it's just easier to be in, even if it's a public restroom, you know, it's still a confined space. And sometimes just the privacy is sorted out is something that I prefer but in terms of being open, I definitely I talk about it. I do a lot of school visits with my job, you know, writing for young adults and young people, I do a lot of school visits. And I always talk about how I was diagnosed and how that changed the trajectory of my life. And I always say to kids, who here knows somebody with diabetes, and almost every kid raises their hand you know, whether it's type one or type two, it doesn't really matter to me, I just, I know that they can make a connection with what I'm saying and relate it to either themselves or someone that they love in their lives. No doubt.

Stacey Simms 10:53
Yeah, I think that's to is the difference between my my personal experience of type 1 diabetes is my 15 year old who has made a career out Have trying to gross out his friends. Yeah, no, since the third grade watch this. Yeah, slightly different experience than a grown woman in

Robin Benway 11:09
that dress. You know? It's expensive. You just really don't want to get anything on this.

Stacey Simms 11:15
So let's talk about the Baby-Sitters Club. Now I'm a little bit older so my guilty reading pleasure as a kid was worse sweet Valley High then Babysitter's Club, also say, okay, okay. But were you a fan of this as a kid, this was something that you read and you look forward to.

Robin Benway 11:32
Oh, I cannot even describe to you like how much I love the Baby-Sitters Club. Like, I can just remember going to my local bookstore, you know, the Walden books that was in the mall at the time when there were still Walden books in malls and scanning the shelf and just looking for the new one and either being so excited when there was a new one or so disappointed when, you know, they came out every month and you know, on day 30 I'd be like, Where's the next one you know, and sharing with your friends or your Got the new super special, so then they would loan it to you and super specials were bad. But yes, I mean, just when I think about the Baby-Sitters Club, because I've also talked a lot about, you know, what is sort of my formative reading now as a writer, like, what did I read as a child and a young adult that sort of made me a writer? I think the two things about the Baby-Sitters Club is that they were so funny. And I think I learned how to write humor and really good dialogue from those books. I think you can't really teach how to write humor or write something funny, but I think if you can see it, you can see how either rapid fire dialogue or really smart responses or interrupting each other like, that was formative for me as a writer was seeing how they did that. And then also just as like a 11 1213 year old girl, you know, that is where, and I'm sure a lot of women and girls have had this experience, your friendships just kind of implode. And nobody really knows why. But suddenly, your best friend in sixth grade is your biggest enemy in seventh grade. And the factions are changing all the time and who's friends with who and who's not friends with who and who Did what to whom it's traumatic, it's a really difficult experience. It's a big part of growing up, but it's still difficult. And the thing with the Baby-Sitters Club was that at the end of the book, they were always friends. So you could see the sort of regeneration of friendship again and again and again. And for me, it was very comforting. You know, when sort of my female friendships were in turmoil, it was so lovely to see these girls work through things and stay friends in the end. So those were, I think the two things that kept me coming back to the book, but a great way to look at it.

Stacey Simms 13:29
Yeah, but you as a reader, your type one experience was with your dad. So I imagined Stacey McGill, the character in the book who has type one wasn't somebody who could really relate to that wasn't what you were reading the books at the

Robin Benway 13:42
time? Absolutely not. Absolutely not. You know, I actually I shied away from Stacey as a reader. You know, I loved I moved to New York when I was 18 years old. I've always wanted to live in New York. So reading her as a 12 year old I was like, Oh, that's she's a sophisticated city girl. You know, that's how they always portrayed her. She's From New York City, but that was my favorite part of her but there were books where either she was just diagnosed or I think there's a book later in the series where she was hospitalized. And I had a hard time reading those just because at the time my dad's health he had been a diabetic for 30 years at that point, so his health had gone up and down, you know, just the nature of the disease and the nature of treatment at the time as well. It wasn't as advanced as what we have now. So you know, it was scary to see my dad go through that and I, Baby-Sitters Club was my safe place. You know, that was my fun, safe, circular path of Stony Brook Connecticut. I didn't want a hospital or an insulin shot coming into it. So I don't say I didn't like Stacey as a character. I love Stacey as a character but in terms of what she went through, I just I really shied away from that. That wasn't I was much more a Claudia dawn girl. So yeah.

Stacey Simms 14:54
How did you approach the Netflix series you've lived with type one now for a while. We all know that they never get it right in In media, I really looked looked at the show. I look very much forward with a lot of trepidation. I was almost afraid to watch it. What was your reaction?

Robin Benway 15:09
I mean, I literally had an alert set on Netflix to remind me that the Baby-Sitters Club will be on Friday, July 3, and then I got the notification. I was so excited for it just because I had loved the books. And you know, I don't know any of the creators personally, but I was familiar with their work and their backgrounds. And I had read a lot of articles by that point about how they had approached the material and I just had a really good feeling about it. You know, I just thought that this is possibly in really good hands. And honestly, I wasn't even thinking about it in terms of Stacey and diabetes. I was thinking about it as oh my gosh, I'm now something that I was a fan of for so long. I can now watch on television. You know, I was even thinking about Stacey, so when I did start to watch it. I mean, I thought it was nearly perfect. I thought that they kept the spirit. I love that they kept the girls young, you do feel like you're watching 12 and 13 year old girls, b 12 and 13 year old girls, you know, and all of the struggles that go into that, but all of their I don't say immaturity, but just that feeling of they're still young, they're still figuring things out. They're not 17 years old in high school, you know, they're still little girls and I thought that was really important what the books were and to the show, and I just thought the way they modernized the material was perfect. You know, they talk about Claudius grandmother being in bands and our you know, Claudia is Japanese American and talk about her grandmother being advanced in our when she was young. And you know, at one point Marianne is babysitting for a kid who's transgender and that would have never been in the past 30 years ago, and I just thought they did a beautiful job of modernizing not only the characters, but the storylines while still staying true to what the spirit of the books was. They did

Stacey Simms 16:45
a nice job with that too. And they did this many times where they would put something in like that, you know, the child who was transgender, but the storyline wasn't so much about that child. It was the babysitter character's reaction to it and reflection of it. But I thought was going to throw this word up. I really thought it was masterfully done. Yes, she learned more about her. And yes, there was a there was a lesson there. And, you know, I know there's a lot of criticism from people who get uncomfortable with those kinds of issues, but I thought it was so well done. And they did it many, many times over. And my 18 year old who's really conscious of those things right now, I was really impressed. I thought it was really well done. But I was very worried about the truth about Stacey, I was like, Oh, no, because we see this happen so many times in media, and I think they got a couple of things that adults would notice kind of wrong. Boy, did they hit it out of the park, in terms of what younger people would see.

Robin Benway 17:41
What did you see in Stacey, what I see in myself. Here's a girl who has many, many things. But one of those things is diabetic. It is not the arc of her life is not the big picture of who she is. It's one thing and there's a scene where she goes to babysit and her blood sugar feels a little bit low and she pulls out a juice box and I realized that I had never seen that in media before. You know, I hadn't seen this girl or any girl or any woman just do that she feels better she keeps going. I mean, I have had literally hundreds of juice boxes on the road working, traveling, you know, so many so many juice boxes go down in bathroom stalls and downstairs bathrooms and you know, just you do what you have to do that's important. And then your blood sugar's come back up and you move on. And I was shocked to how blown away I was by that because it's such a simple act, but it is such a big part of managing your blood sugar and managing diabetes.

Stacey Simms 18:35
Yeah. Didn't you expect her not to do that and faint or have to go home from a babysitting job? That's that's what I think we all expected her to do. It was such a nice normal. No, I'm fine.

Robin Benway 18:45
Yeah. And I also I did like there is a scene I think at the end where it's sort of like a neighborhood meeting with all the parents of the kids that they watch and though the girls are explaining what it what this means for Stacey and how this works, and I liked that they introduced the doubt of the parents. Because I think that's, it's the pushback that you get like, are you okay? Can you handle this? You know, there's this feeling of, are you just gonna collapse at any moment? Are you safe and I like that they were like, this is how we this is how Stacey manages that this is how she handles it like these are factors in her daily life, but she's also smart enough and mature enough and knowledgeable enough to take care of herself. And I thought that that was a really good message as well to see that some people may not understand it. And here we are explaining to you what this is. Really, if we had had that exact discussion, not as a group of parents, because we aren't lucky enough to have a Baby-Sitters Club in my neighborhood.

Stacey Simms 19:37
One of our babysitter's when my children were younger, has type one. And when Lauren would come over we the first couple times we talked about, well, what would happen if you had a low blood sugar and what would happen if this happens, and we talked about all of that, and it was funny, I saw a few adults in the community commenting on the show, and they that would never happen. parents wouldn't talk about it that way. And then they also and I said yes, well, I'm sorry, but we did. Mother's overreaction, right? No mother would overreact like that. I was like, Hello, I mice my son's very first low blood sugar when it was a bad enough low sugar that we had to treat with more than just a juice box. We were about three weeks in, I called my endocrinologist convinced he was gonna send us to the ER, Mm hmm. Right? Okay, we treated it. His blood sugar's coming up. What do we do now? They were like, What do you mean? But I thought we were gonna go in for tests or something. So that kind of confusion really made me laugh, because in the show, she actually did wind up going to the hospital for the day. But in our experience, I mean, I did call I can't say that I didn't. So it was pretty funny to see our real life reflected in that way. I did also like the mom turn around by the end, but it was more as we mentioned earlier, it was more about Stacey and less about the other character. She turned it around.

Robin Benway 20:52
Well, going back to the mom, you know, I was diagnosed at 26 I know how much my mom still worries about me to this day like she would never Say that you're stupid ever say it explicitly. And I'm sure the way you worry about your children and your son, you know, there's just always going to be the worry. I think that's also very much based on who Stacey's mom and her parents were in the books as well. They were very anxious about her disease. And I think that was really important to see that, you know, Stacey is managing many different facets of this disease, including what is other people's reaction to it, including, what is her? What are her parents reactions to her? And it and I like that they were able to have that conversation and the confusion between this is who I am versus this is how you're making me feel. I mean, I think those are things that every young person feels even if they're not dealing with a chronic disease or not diabetic, how are you reacting to me versus how I want you to react to me, so I thought they did a really good job with that, but it's just tricky because every person you meet is going to react completely differently to your diagnosis and regardless of how you react to it. And so that's another thing that you're always navigating is, I mean, I'm sure your son has heard this. I'm sure every diabetic has heard this, but we Hear the Oh yeah, my uncle had it. He lost a leg or he now he's blind. You know, everybody write tragic stories and you have to sort of put up a barrier and remind yourself okay, well, that's not me that is your uncle or your dad or whoever. So I think that was for me as I bet seeing Stacey navigate the reactions of other people I thought was really important as well because that is a big part of it.

Stacey Simms 22:22
Robin Well, I have you and as you listen, Robin is a National Book Award winner New York Times bestselling author, six novels for young adults. I want to ask you, Robin, why is it so hard to write genuinely for young people?

Robin Benway 22:38
I think for me, you know, six books in now at this point is empathy. It's the very first thing that it has to be the biggest part of every book is empathy. I think it's very easy to like see young people today and be like you kids with your tic tac toe and your snip snap, you know, like they don't, you know, people it's very, very easy to look at what is this? What are we in now, generally See, I guess and look at them and think, well, in my day, we had this and not that we weren't on our phones all day. I mean, I'm on my phone all day. I'm a 43 year old woman. So I don't you know, I'm not gonna judge a 15 year old for being on their phone all day. But I think for me, the biggest thing is empathy, because nothing really changes, right? Like we're all still figuring out how to get along with our friends. Who do we want to be? How do we get along with our parents? How do we move through the world? You know, I as you get older, you hope you get wiser you hope you have more experience that makes you grow mentally, you hope that you maybe have a little bit more agency and a little bit more ability to vocalize how you feel and how to stand up for yourself but the struggles are still the same. You know, the way you get along with your teachers the kind of the same way we all get along with a boss or sometimes in a classroom, you have to be with people you don't really want to be with same as in an office space. You know, sometimes you have co workers. So I think the feelings are always the same. The technology doesn't matter. The place doesn't really matter for me. It's just The feelings whether it's love or family or friendships,

Stacey Simms 24:03
have you ever considered putting type one into one of your books? Yes,

Robin Benway 24:08
I have. I've definitely over the years, I've had conversations with different editors or people in publishing. And they've said, like, hey, you're diabetic, would you ever think about writing a book about diabetes? I think the thing is for me, and this is something that I've really, really, it's why I don't speak publicly about being a diabetic so much is that I don't want it to become the only thing that people think of when they think of me again, I'm not ashamed of it, I'm very open with it. But at the same time, you don't want to just become Oh, that's Robin, she's the diabetic, you know, we we are all more than just one thing. And so I know that if I do a book about being a diabetic or a character who has diabetes, I will have to talk about that book for years, you know, hopefully, you know, one to two years. You know, it will become the defining part of every interview that I do every, you know, work conversation that I have, and Worry sometimes that it will dilute down to just me being the diabetic when I like I said I am so many other things as are pretty much every other diabetic out there we are more than just that disease. And so I do think about it. Also for me fiction is such a wonderful escape. I don't write books because I have to I write because I love writing books, especially for young people. And I think that for me, I love that escapism of it. I love that I am not having to figure out a character's blood sugar situation. I'm already I've got enough doing that for myself. So I don't know I think about it. Maybe as the years go by, maybe in a few years, I'll engage it. There would have to be a really good idea. It wouldn't just be Oh, this character has been diagnosed with diabetes, there would have to be more at play for me so. So I think about it, never say never, but if someone else wants to do it, go for it.

Stacey Simms 25:52
You know, it's funny, I don't want to put too fine a point on it. But the first part of your answer there, which is you didn't want to be defined by Diabetes Connections. What Stacey's story is all about to Yes. And I think that's why we like it so much, because that's how almost everybody I know with any kind of diabetes feels. Yeah, right. Agreed. I think anybody with anything

Robin Benway 26:11
like that, you know, it's very easy, especially in sort of these wild modern times to focus on maybe what is unknown or scary or, you know, baby, if people don't understand it, that's what they kind of go to first. But that's just not how I view and that's not how I view being diabetic. It's just so it's just a thread that's woven into my life, you know, I, it will always be there. It's something I will always manage. But it's so inherent to me. I don't want someone just to pull that thread out and only look at that rather than the bigger picture.

Stacey Simms 26:41
Is there any depiction of type one in media that just makes you mad? Like, can you think of something where you're like, Oh, I hate that one. When people refer to that one,

Robin Benway 26:48
I can definitely think of one thing but I can't say

Robin Benway 26:52
but I it was fairly recent and yeah, it just I for me, it was sort of like that thing where you're just like, Are you serious? Like, is this really like, this is what you had to do, and this is what you did with it. And it just it was petty on my part. And, you know, mean, and I can't say it, but I got so frustrated and so annoyed. And, you know, I think that was a long simmering feeling that once I got to the depiction of Stacey, I think those two feelings just sort of combined and became an article which was I can't believe I just had to read this versus Oh, I can't believe I just saw this, you know, and that the negative and the positive of that sort of combined together, but yes,

Stacey Simms 27:32
definitely. And then Baby-Sitters Club has got to have a season two, you know, is there anything that you remember reading that you really liked them to see? And it doesn't have to be about Stacey, oh gosh,

Robin Benway 27:42
I really want to see Don's mom and Mary's dad get together. I know they were together in the first season but I if memory serves, they get married. So I really want to see that wedding. Just because I love Dawn's mom both in the book and on the show and I love the way that they've treated Maryam dad is fun. This is kind of sad, but in the opening scene. Louis, the Collie, you know, appears with Christie. It's Christie's dog Louie Who's that Collie dog. And I was like, Oh, no, Louis because I don't. If memory serves things get a little dicey. Oh, no.

Stacey Simms 28:11
Sorry. Spoiler

Robin Benway 28:13
alert. I really, I when I saw Louis, I was like, Louis, you know,

Stacey Simms 28:19
it is amazingly six with us from what we read in our childhood, right.

Robin Benway 28:24
Well, I was talking with a friend of mine about this. You don't realize how much you buried in your brain. You know, I'm watching the show. And I'm like, oh my god. It's Louis. Oh my gosh, it's more been a destiny. I forgot about a bit of destiny. And just Charlotte Johansen, Jamie Newton and his sister Lucy and I'm like, how do I remember all of this? And yet I'm like, did I pay that bill? See now I'm

Stacey Simms 28:45
jealous. I want it I like sweet Valley High. backer revel in those memories.

Robin Benway 28:52
I'm sure it's developing somewhere.

Stacey Simms 28:54
I kind of hope not really cheesy. Can I ask you are you working on anything new right now I know authors always hate that. I know just finished and Oh, that was great. But what's that?

Robin Benway 29:07
I always say it takes a brave person to ask a writer somebody working on because oh tread carefully. I am working on something. Yes, it has been a slow road. But the book has evolved many, many times. And I've sort of distilled down to what the book actually is. And I have started writing it. I feel really good about it. I started it a couple times, didn't feel good, went back to the drawing board ripped it all up again and started over. So I do feel good about it. Now it has taken me a long time to figure out what it's about. And I think at the same time, I was coming down off the success so far from the tree and the time that that took, which was wonderful, no complaints, but it was hard for me to both work on a new book and enjoy the success apart from the tree. So I am basically staying with family for a few months. I'm sort of quarantined away here and just everyday I sit down and write 1000 words and it's going well, it feels very, very good to be writing. Again, I haven't written for a while and I have missed it very much. That's fantastic. Well, I look forward to reading that. I'm so glad that I read the article. That was an L. Thank you so much for joining me to talk about this. It was a lot of fun. And I continue to learn more about the Baby-Sitters Club baby. Those books. Thanks so much for joining me. Thank you call me if you have any questions about the baby sitters.

Stacey Simms 30:17
You got it Robin.

Robin Benway 30:23
You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms 30:29
More information on Robin and her books on the episode homepage. I'm really appreciative that she jumped on with me and I definitely got to seek out her books now. It was funny to think about not just the Baby-Sitters Club books, which as I said, I was marginally familiar with as a kid I was a little too old. But the sweet Valley High books man, she made me want to see if my mother still has them. I bet she does. I guarantee you they do not hold up for where they are relic of their time. Right The 80s if you're familiar with sweet Valley High I know you know what I'm talking about. If you are not I will not suggest Due to any more of an explanation, all right, in just a moment, I will be talking to a different kind of book altogether a different kind of author, a dad who wrote a book about his son's diagnosis to help other kids and families.
But first Hey welcome to our newest sponsor Diabetes Connections is brought to you by Gvoke HypoPen you know, almost everybody who takes insulin has experienced a low blood sugar and that can be scary. have very low blood sugar is really scary. And that's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle and that means it is easy to use. How easy is it, you pull off the red cap, you push the yellow end under bare skin and you hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Jeeva glucagon comm slash risk

If you have a child diagnosed very young with Type One Diabetes, chances are you have a favorite book about diabetes that you read together. We were so lucky to have a couple of these Rufus comes home was one from JDRF. There was another one that I've mentioned before called Jackie's got game that we absolutely adored. There are a lot of wonderful books now for kids with type one. And this week, I am talking to one of the authors of these books. And that is Mike's for as he wrote year one with type one, four and featuring his son, Andrew, it's all about their diagnosis story and also a bit of a teaching tool. Here's my conversation with Mike.
Mike, thanks so much for joining me. It's great to talk to you.

Mike Suarez 32:43
Hi, Stacey. Thanks for having me on.

Stacey Simms 32:45
One of the things I loved doing when my son was diagnosed was finding books that we could read together. And you know, My son was tiny, he wasn't yet too. And so when you have a picture book like this, it's really a nice opportunity to go through it with the kids. So I just want to let you know that They really appreciate what you've done here. I think it's great.

Mike Suarez 33:02
Yeah, thanks for saying that. You know, it's kind of the same experience I had, you know, I went to Amazon when he first got diagnosed, and I was looking for books myself, and I found some pretty good ones out there. But I was, you know, really looking for one that really kind of resonated and something that I could share with my own family members and friends to really kind of drive home what it is that he goes through and what it's all about.

Stacey Simms 33:23
Well, it's been a couple of years now since Andrew was diagnosed, but why don't you take us through? Even though you're talking about it in the book, why don't you take us through his diagnosis story? Had you all had any experience with type one Had you ever given an injection before and this,

Mike Suarez 33:36
so I was unfamiliar entirely with Type One Diabetes. My wife was more aware of it because she had friends growing up and in college that had type one diabetes, and she was around people that have given themselves insulin injections. And for me, I was just totally unaware of this condition. I was totally aware of of the treatment for it. The only thing I knew of diabetes was unfortunately, just That joke that people like to tell around how if you eat too much candy, you get diabetes. And that's basically all I knew of diabetes, which obviously isn't true or isn't fair and especially isn't isn't true of type one diabetes. So I learned a ton, just in that that first few days in the hospital,

Stacey Simms 34:15
when did it occur to you that with everything else that's going on, it would be a good idea to write a book.

Mike Suarez 34:21
So it was probably a couple months shy of his first year with it. I don't know how the idea popped into my head. I was taking the train in and out of Boston every day for work. And I think just a few lines kind of popped into my head. So I took out my iPhone and just wrote him in my notes app. And I think part of it too, was that my wife and I were talking about bringing a book into school, to read to his classmates, know what it is that he has and goes through and know why it is that he has to leave and see the nurse and why it is he gets, you know, Skittles every once in a while and he's in class. And, you know, going through the books out there, you know, again, there were good ones, but I was just looking for the right one that told the story I wanted to tell his classmates in the way that I wanted to, you know, I've seen that a lot of the other books out there are actually self published. So I knew that the opportunity to do this was out there, you just had to kind of sit down and figure it out. So I utilize my train time in and out of Boston to kind of write and refine my lines and kind of do a little bit of research to figure out what the process was all about

Stacey Simms 35:26
was the idea for you to write it for kids to read or for parents to read. I mean, it's the kind of book right, it's in rhyme. But there's some concepts in there that are going to be above a four year olds head.

Mike Suarez 35:38
Right. I think what I wanted, most of all, well, I guess there were a few goals. There were a few readers I had in mind. One was the newly diagnosed I wanted for newly diagnosed children to be able to read this and be able to relate to Andrews story and be comforted to know that you're not alone in this that there's other people that have been through Through this and have dealt with it. So that was maybe my primary audience secondary to that would be kind of the friends and family of somebody who is newly diagnosed, including my own friends and family so that they can get an appreciation for what it is and kind of understand what it is that their, you know, diabetic friend or family member goes through. But I guess, you know, I was just thinking about when I read to my own kids, you know, a lot of time it's me reading to them, not them. I guess as they get older, it's more of them reading to themselves, but it's mostly me reading to them. So I can, you know, kind of pronounce the big words, but also the books that we tend to enjoy the most, or that I enjoy reading the most and they seem to be the most receptive to are the ones that rhyme. So I did want to have that kind of make it accessible for kids not make it kind of a chore to read. And that's something that I none of the other books that I saw did was was kind of right in verse so I wanted to have that aspect of it to be accessible. Similarly with the pictures and the drums I wanted them to be kind of, you know, light hearted in a way as much as it's a serious subject matter, but to make it accessible for kids to understand,

Stacey Simms 37:08
the book tells the story of you know, your family's journey, and then educating people about the basics of type 1 diabetes. But at the very end, your son has signed it and say, thank you. How did that piece come about?

Mike Suarez 37:23
One thing I haven't mentioned yet is I actually did this whole thing in secret, because I did it on my train rides, and nobody was watching me and then at night, I would, you know, once everybody wants it bad, I'd maybe work on it a little bit more. And this includes the whole process, finding the illustrations, kind of framing it for them, getting beta readers to help sharpen up the the rhyme and all that sort of thing. And I wanted this kind of personal touch because I wanted people to read it and realize that this wasn't a fictional character that this is a real boy. There was maybe the same day that I asked Andrew to write up a birthday card for a birthday party he was going to I just took out another piece of paper and just asked them to write on it. Thank you for reading love Andrew. And he asked me What's this for? And I just was like, I don't worry about it. Like I didn't really, I just asked him to do it. Then I put it all together. And then I when it was finally done, I got to read it to my family for the first time, you know, naturally they all loved it. But I think it was I read it first to my wife and son while my daughter was napping, because I didn't, I kind of wanted to, you know, have their full attention. But after she woke up, Andrew took the book, and he showed it to her. And he flipped immediately to that page that had his writing on it, and was like, so proud of having that contribution to the book. That was the first thing he showed his little sister. That's great.

Stacey Simms 38:41
There's a page of the book that, you know, has him coming home and has gifts and things with a lot of beams on tags. Are those friends and family names.

Mike Suarez 38:51
Yep, they were basically you know, the people that probably were the first to find out and you know, felt, you know, really bad and came to us with, with just some gifts for Andrew, including our next door neighbors and their kids, my sister and her husband and their kids, basically, you know, aunts, uncles, siblings, it just so happened that some of the names rhymed. So if you read them in order, even though the name tags kind of, you know, rhyme together, when I recognized that I was like, you know, I should put them all in there and kind of, you know, thank, you know, some of the people that were, you know, part of this journey and a part of kind of coping with all of this.

Stacey Simms 39:31
Yeah, I think it's really well done. The one thing I would say is, there's this little bit about no sneaking snacks. We count carbs to know what goes into my body, but no sneaking snacks. That's beyond being naughty. Yeah, I'm no psychologist, but I always felt like sneaking and and associating any bad behavior with diabetes was something that maybe it was something that we never did. Let's just write that way in my house. We always said you can't get in trouble for anything to do with diabetes, it just flies off the books. So that's the only thing that kind of made my eyebrows go up a little bit. But Gosh, Mike, I'm not really not a critic here. Sure, you know, and I think that's also a good illustration, no pun intended that we all parent in different ways. Yeah. Right. I mean, there's no one size fits all you got to put insulin in, you got to know where your blood sugar is. Yeah. But you know, the way you parent is probably not exactly the way I parent and that's fine. Right. So that I was just curious. And you know, you showed it to your endo. I think that's, again, with my book, I did the same thing, right. You know, you're not a medical professional, but you're showing it to the medical professionals and hoping that they will flag anything that comes up. I'm also curious to know, your daughter makes a couple of appearances in the book, and she's one of those names that we mentioned. Who is she doing and how do you balance the son who gets all this attention for type one and trust me, I have the same situation in my family, right. I have an older daughter who doesn't have type one. How do you handle that with her? How is she doing?

Mike Suarez 41:00
Yeah, I mean, she's just as used to it by now as as Andrew, you know, Andrew was four and a half, she was one and a half. So she has no memory, you know, whereas Andrew may may recall, he's he's a, he's got a pretty good memory for a kid his age, he may recall a time before all of this, she would have absolutely no memory. So this is all she's ever kind of grown up to now. So whereas if they were teenagers, then maybe if she was used to just, you know, snacking whenever she wanted, she would continue to do that, despite Andrews diagnosis, but because we're able to kind of be careful around that about that stuff from the outset. If it's not time for Andrew to eat, then we're not going to let her eat in front of him. But if we're you know, giving Andrew you know, something to bring his blood sugar up, if it's maybe a pack of Smarties or something like that, and we only need to give them eight of the 10 then maybe we'll give her the other two, but it is interesting to see how she internalizes as she gets older, how she responds to it, somewhat funny side note around it She sees Andrew take shots all the time and she doesn't get them herself. And sometimes she sees Andrew get shots and she like, asks or she at least at least did this. earlier on, she would say, where's Maggie shot? Where's Maggie shot? And we would explain No, Maggie doesn't need a shot. So I think it was last year when we took her to get a flu shot. She was all about getting her flu shot right. After she got it, she asked for another one. And she was like crying because not because she got the shot, but because she only got one, which was kind of backwards from what you'd expect a kid raised to do. And then another kind of similar story is there was one day where she closed like a dresser draw on her finger and her fingernail started bleeding and you would expect a kid her age to just start wailing. She actually picked up her finger and she was like check my blood sugar. Check my blood sugar.

Mike Suarez 42:51
You also wrote a Christmas story. Yep. Why did that come about? Tell me that story?

Mike Suarez 42:59
Yeah, sure. So When you're one with type one first came out, yeah, I created a Facebook page to kind of go along with it to give updates about Andrew and to kind of, you know, create some fun memes and things like that to kind of draw attention to it. And I created a kind of a spin on Twas the Night Before Christmas. And every once in a while, like a new couple lines would occur to me even after Christmas, and I would kind of go back and edit the post. And then at some point, I was like, you know, there's probably enough here and there's probably enough opportunity for reuse from my first book that, you know, I wouldn't even be that many more new illustrations. I could just turn this into another book, relatively inexpensively and you know, certainly justify the cost that goes into it. And so I said, Yeah, why not? So I just kind of thought through it and just kind of threw it together and I was really happy with the way it came out.

Stacey Simms 43:50
So Mike, we celebrate Hanukkah. I'm not sure how well versed I am in this classic poem, right? But it seems to me that all of the reindeer have Dexcom on I'm not sure I remember that from the original Am I looking at this right? Do they all have Dexcom

Mike Suarez 44:07
everybody everybody basically everybody in the story that the Dexcom the reindeer have all all of Dexcom on the Elf on the Shelf has one Santa has one basically everybody in the book and that's what I wanted to create was kind of a world where you know what, it's okay that everybody in the story has it.

Stacey Simms 44:25
All right, so what's next? Well, there'll be another issue of this are you gonna move on to the elementary school ages Andrew, you know, with seven now so it's a little different than when he was little?

Mike Suarez 44:35
Yeah, it's a good question. I'd certainly like to do you know, to continue Andrews story. I haven't really started anything yet. But I've got a few ideas floating around. I mean, I think one of the things I realized is that there's actually more children's books that are picture books than there are kind of chapter books. That's obviously a whole different ballgame. Then picture books, but my mother in law's actually she's an author. As well, and she's written lots of novels. So if I do decide to go down that road, it'll probably be a lot more work than I did for these other ones. But I certainly would have, you know, a mentor throughout the process. If I did go down that route.

Stacey Simms 45:13
It'd be great to have more books with a protagonist who lives with type one. And it's not about type one, if I could put a request in. Yeah, no, it would be really nice. There's a few books and I'll, as you listen, I'll link some of them up in the show notes. But there are a few books Besides, you know, the Baby-Sitters Club that feature Stacey who lives with type one, but it's a little outdated at this point. And the lily books, there are some I hesitate to call them novels. They're like novelizations for middle schoolers and stuff like that. It'd be great. There's only a couple of books I can think of that have a protagonist who lives with type one, but the book is really not about the diabetes.

Mike Suarez 45:47
Right. So yeah,

Stacey Simms 45:48
that's, I'll put my vote in for that.

Mike Suarez 45:50
Yeah, certainly. I think that's a great idea.

Stacey Simms 45:53
Well, Mike, I really appreciate you coming on. These books are so fun. I have a lot of great memories of reading the book that we liked. When he was little Jackie's got game was our favorite. I don't even know if they're still printing that one. But that was the one we loved. So I hope that people find this and love it, you know, kind of just like we did that stories. Thanks for coming on and sharing your story. Sure,

Mike Suarez 46:13
yeah. Thanks so much for having me.

Stacey Simms 46:14
You can find out more about Mike's book, just go to Diabetes connections.com and click on the episode homepage. This is in the show notes. Every episode has show notes on whatever app you're listening to. If you listen to podcast apps, they will display a little bit differently. I think Spotify is finally letting people click through. In other words, if there's a link in the show notes, you can get there through Spotify, but you can always go to the homepage at Diabetes connections.com. if things aren't showing up in your player and find out more there, tell me something good is up next. And boy, there have been so many changes this year with COVID and the JDRF bike rides not an exception, but there's some really good news about one particular writer and I'm going to share that
but first diabetes Connections is brought to you by Dexcom. Do you know about Dexcom Clarity. It is their diabetes management software. For a long time, I just thought it was something our endo used, but you can use it on both the desktop or as an app on your phone. And it's an easy way to keep track of the big picture. I check it about once a week. It really helps me in many dial back and sees longer term trends and helps us not to overreact to what happened for just one day or even just one hour. The overlay reports help add context to Benny's glucose levels and patterns. And you can share the reports with your care team. We've done that all this year with the virtual appointments makes it so much easier and productive. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at Diabetes connections.com and click on the Dexcom logo
a couple of years ago I met a local woman here in the Charlotte North Carolina area who lives with type 1 diabetes. Dana Cumberworth first impression that she made me was that this might be one of the fittest people I would ever meet and come to find out she is really Just an athlete, just one of these people who is always always moving and pushing and thriving with type one she bikes she runs she weight trains. Dana was diagnosed as a student. She was a first year student at Wake Forest and their physician's assistant program. And how she was diagnosed is pretty incredible because they were doing the endocrinology part of the class. And when her lab partner tested Dana's blood sugar, it came back at 700. So she was diagnosed in the class while she was diagnosed at the doctor's office the next morning. Fast forward. She has since done I believe, three Iron Man races and then she started getting involved with jdrf. And the bike rides this year was two been a very big deal for Dana because this is her 10 year diaversary. It was just last week actually that she marks 10 years with type one, and she was going to do several if not all of the rides this year. Oh my goodness.
But of course plans changed. Everything went virtual. So she and her husband and friends planned ahead To the beach to the east coast here of Charlotte, North Carolina, and do their own version of the ride there. This was supposed to happen this past week. But if you've been following the weather and the hurricane trackers, then you probably know that hurricane eecs was a big problem here in North Carolina. So instead of being able to complete this at the beach, in fact, with the way the podcasting time shifts here, she will have completed 100 miles in Charlotte with some friends and family. So that is absolutely amazing. She set a new goal she keeps surpassing her monetary goals. So her new goal set just a couple of days before that ride is $20,200 because as she said in one of the videos she makes 2020 has already been unbelievable. So why not push that goal? That way? She's not that far off. So 2020 $20,200 and oh, I have forgotten to mention that Dana and her husband announced a couple of weeks ago that she is pregnant, I believe at this point. She's about 1819 weeks along. Hi, I'm going to put some of her videos in the Facebook group because she's been talking about her journey this whole year. And I just think her story is amazing. I will link up some of the videos that she's been doing into the Facebook group at Diabetes Connections, the group, but yeah, hundred miles, type 1 diabetes pregnant. And when you look at her smile, it just looks like it's a piece of cake. She's so inspirational to me, especially to push on with everything that's happened this year and how this ride keeps getting changed and changed and changed. So congratulations, Dana. Continued Good luck and good health to you and your family. And we will cheer you on.
If you have something good going on. It doesn't have to be 100 miles of biking while you're pregnant. It can be you know, a diaversary milestone that makes you and your family happy or something that you really want to shout to the hills. Let me know you can email me Stacey at Diabetes Connections comm or post in the Facebook group Just tell me something good

At the top of the show, I said I was going to talk a little bit more about the Baby-Sitters Club, the TV show on Netflix. And I think that Robin and I covered it pretty well. But I just wanted to say a couple of more quick things about the actual depiction that I realized we didn't touch on in the interview. If you haven't seen it, or you've had I'm curious what you think the feedback I heard from my friends who have kids with type one who watched it was that I don't know anybody who didn't like it universally, very well received by their kids. They loved seeing a beautiful young woman who was accepting of her condition who told her mom, you know, I'm going to do it this way. Who asked for a fancy purse, she didn't get the fancy purse. But you know, she did this for that Gucci bag. And you know, other things like that, which made it seem very normal. You know, she was low during babysitting, she drank the juice box and went on her way. It didn't seem insurmountable and her friends, the kids, I don't think Robin and I talked about this. The other babysitters in the club, when they found out said Why does somebody with diabetes or you can still do such And so with that, right? Okay, no problem and they really just moved along. Like most kids do, it's the adults that have more of a problem,
the things I didn't like about it, they still got stuff wrong, which amazed me because I know that they had to be consulted with people who have type one for this, or at least I hope they did. But what they got wrong was the seizure. Did you see that she had a seizure before she was diagnosed, and they talked about it like she went into insulin shock. Now, I am not a medical expert. Perhaps that could happen. But it makes no sense to me that somebody who is not yet diagnosed with type one, so they are not taking any insulin could go into an insulin shock that would make them have a seizure. Right. It just seemed kind of a stretch. They wanted to do something that would make Stacey embarrassed to push the reason why they moved. It was just this whole I don't know to me that was a big turn off, but it was quick, and I get it it move the plot along.
The other thing was this weirdness where that one low blood sugar, which Stacey treated herself causes her mother to take her in for a day of tests. Now, having been a very Worried Mother, I'm still one, let's face it. But when I called my endocrinologist every single day of the first month that Ben he had type one, which I really did do, they never told me bring him in for tests because he had a low blood sugar. Right? I could see a parent calling. I could see a parent being alarmed. I couldn't see an endocrinologist going along with that. And given Stacey was talking about how she was in the hospital for a whole day taking tests. So that was also a little weird. Is it nitpicky? Yeah. But if you're going to tackle something like type one, it's really not that hard to get it right. So I hope they continue to follow Stacey and show her confidence and show we're doing lots of other things that have nothing to do with diabetes. There's definitely gonna be a season two of this show. It's a huge hit. That means there's a lot of room to get it right. So I stay optimistic. What did you think I'm really curious to hear what other people have to say about this as more people discover the series
before I let you go, I have something to ask of you and it is about podcast reviews. If you are still listening, I know you were a big fan. I would really appreciate it. If you haven't moment to go to whatever podcast player you're listening on and leave a review. Maybe you're listening on the website or through social media, but especially if you're on Apple podcasts, I'd really appreciate a review there. If you're not, you can head over to Apple podcasts easily find Diabetes Connections and hit subscribe. It's free to subscribe. no cost. It is free on any podcast player and we are everywhere you can get audio Spotify, Pandora, Apple, Google Android, if you're not sure, go to the website, Diabetes connections.com. Scroll down, and you will see 15 links of places to subscribe to the podcast. And you just you can pick one, chances are good, the app is already on your phone and subscribe for free and leave review. I'd really appreciate it. All right, thank you to my editor john Kenneth audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

Benny 55:01
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

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