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.
Alisa mentions playing in concert while pregnant. See that video 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.
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
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
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.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
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.
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.
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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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.
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.
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?
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.
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.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
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
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.
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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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.
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
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.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
There's a new superhero coming to the popular CW network lineup. Stargirl features actor Brec Bassinger, who lives with type 1 diabetes. We first spoke to Brec a couple of years ago, just after her run on Nickelodeon's "Bella and the Bulldogs." She shares what’s changed with her diabetes management since then, advice about speaking up for what she needs without feeling weird about diabetes & much more.
It's an athletic edition of Tell Me Something Good with marathons! Hiking! And that feeling when you do something your middle school coach told you you’d never do because of diabetes.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:26
This week, there's a new superhero coming to the popular CW network lineup. Stargirl features actor Brec Bassingerwho lives with type one. After they started production, she found out another person in the cast and on her superhero team also lives with T1D.
Brec Bassinger 0:44
I think it's more of having that companionship, that person who understands when we're on the 17th hour of work and they bring out another snack that just as carby but we're hungry and sleepy but we don't want to eat all these carbs and just being able to look at like okay, you get it, and talk to each other and understand that was just so nice to have.
Stacey Simms 1:02
She'll share more about what it meant to have that actor Cameron Gellman on the set with her. We first spoke to Brec a couple of years ago after her run on Nickelodeon, in Bella and the Bulldogs. She talks about what's changed with her diabetes management advice about speaking up for what she needs without feeling weird about diabetes, and a lot more
and athletic addition of telling me something good this week, marathons hiking, and that feeling when you do something your middle school coach told you, you never do because of 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. I'm so glad to have you along. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I have a feeling that this interview is gonna bring a lot of new people into the show. So just a quick word. I'm your host, Stacey Simms. My son was diagnosed with type one right before he turned two He is now 15 years old. He's had diabetes for more than 13 years. My husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. I spent a lot of time in local television and radio news. And that's how you get the podcast.
A reminder popped up on my phone this morning about one of the trips I was supposed to be taking, like many of you, you know, of course, we had travel plans for this spring and this summer, and I was going to a lot of diabetes conferences. And it's so sad right to see those reminders pop up. But we have been doing a lot of virtual stuff. And that's been really fun to not the same, but a wonderful way to stay connected.
And I'm bringing that up because I'm going to put links in the show notes. I've got a couple of events coming up jdrf and other organizations. I did one for Project Blue November not too long ago. They've been really great about scheduling these talks, the online summits, the webinars, and I've been thrilled because my topic right now is the world's worst diabetes mom, and it's been so much fun to share the information That's my book that is just out. And I'm still so excited about that. But it's been really fun to share it to people that I wouldn't have been able to meet, right? Because if I was going to Detroit, which I should have been going to this month, then we would be meeting people just at that summit. But instead, I get to meet people from all over the country. I'm trying to look at the silver lining on it. And really, that's about all we can do right now.
But thank you so much the support for the book and just the last couple of weeks has really picked up if you want to check it out. Of course, I'll put a link in the show notes. It's on Amazon, The World’s Worst Diabetes Momis a parenting advice and humor book. It's kind of part memoir, kind of part, advice column and all about our experiences, making every mistake in the book when it comes to diabetes, and watching my son grow up as a confident and responsible and healthy kid, despite my many, many errors along the way. So thanks for letting me tell you about that. And boy, I hope we get back to see each other in person. Soon, it'll be a while, but it'll get better
Right to Brec in just a moment. But first diabetes Connections is brought to you by Real Good Foods, nutritious food delivered straight to your door. They have so many options. They have pizzas, I think they were first known for their pizzas and they have this great cauliflower crust pizza, chicken crust pizza, and the pizzas come in different varieties or just plain crust and then you can make your own. We also really enjoy the breakfast sandwiches. They are seven carbs per sandwich. 22 grams of protein, they always post up on their Instagram, they have these grape varieties that what they show it you could really do to jazz this stuff up and people put all sorts of things to add to their sandwiches. I like them just the way they are. You can find out more about all of their products, where to buy How To order, just go to Diabetes connections.com and click on the Real Good Foods logo.
My guest this week is the star of the newest superhero show on The CW Brec Bassinger plays Stargirl aka Courtney Whitmore, and this show is getting great reviews. I will link some of that up in our Facebook group. And if you're not familiar with the CW lineup, this is the same people behind the hit shows Arrow and Flash and Supergirl. I will put this clip in the group as well. No, you can't see it. But here's a little taste.
(Show Clip here)
Stacey Simms 5:38
Stargirl is set to premiere May 18. Now I first spoke with Breck three years ago, and since then she's moved out she's living on her own. And as you'll hear, that is a big reason why she now wears a CGM. I need to tell you we did this interview back in January before COVID-19 and the quarantines and all the changes we're going through right now. So I tell you that just So you're not surprised at the tone, right? It's a little bit different, a little bit lighter than we might have done right now. And she's also talking about travel and conventions and things that you know have absolutely changed. Alright, but here is my interview with Brec Bassinger
Brec thanks so much for coming back on the show. It's been a while. It's great to talk to you again.
Brec Bassinger 6:18
Yeah, three years. It's good stuff.
Stacey Simms 6:21
A lot has certainly changed for you. This is so exciting. I mean, you were busy then. You're busy now. But what can you tell me about Stargirl? I mean, we'll talk about diabetes eventually. But let's talk about the show.
Brec Bassinger 6:33
The important stuff in life. All of last year 2019. I was in Atlanta filming it. I've seen a few of the episodes and I'm really proud of it. I've never been part of something that I'm so like, shamelessly proud of where like the sounds are put doesn't like bragging I'm just so proud of I want every single person to see and I feel like that has to do a lot with the show runner. His name is Geoff Johns. He worked on like wonder woman and he just so amazing and like this spirit and happiness he brought to us that I feel like really just rubbed off on everyone. That was a part of it. So I I really am shamelessly. So excited for everyone to see it.
Stacey Simms 7:10
I think that's great. And you know, we've been watching the CW, DC heroes comic book shows for a couple of years now. And you know, they're just fun. And they're for families. They're good hearted. Is this in that same spirit?
Brec Bassinger 7:23
Yeah, it totally fits in with those. I've had. My family they got to all watch the first episode of the holidays with me, and they all really enjoyed it. I feel like as a whole, this one's more comparable to a film like a movie just the way films like the way it's written, like, like Flash and Arrow. It's normally like a villain per episode. And ours is more kind of like one season story arc like you can't just sit down and watch one episode and know what's going on. You kind of have to watch the full season more like a stranger things. I'd say that's kind of the main difference, the odds of like fear and it's just like happy it's not too dark. It's not Raise you like it's definitely a family friendly show, which there's not much of those. Yeah.
Stacey Simms 8:04
a that is great to hear. All right. So I know nothing about TV process and CGI and everything else. But to watch what's out there already. It looks like not only are there a lot of special effects, there's a lot of practical effects and you're, you're doing a lot of stunts. Are you doing all of those stunts or some of those stunts? I mean, it looks like it's a very challenging role physically.
Brec Bassinger 8:23
Yeah. So Stargirl, she has her her cosmic staff. So before we started filming, they put me in training with like staff training and stunt training. And so I got to do a lot of it. It was it was so funny because like at the beginning of the series, even with a couple weeks of training behind my belt, they would hand me the staff in a scene. And I just, like forget how to act because I would be so overwhelmed with having to like fight with this six foot long, both staff, but I thought that was really special because at the beginning like Courtney or struggle, like she shouldn't be as comfortable with that staff. And then towards the end of the season, when they gave me some staff, I felt so confident wasn't even thinking that it was coming. have like an extension of my arm at that point. And that's where Courtney should have been. So it was cool to kind of have that journey with Courtney.
Stacey Simms 9:11
Yeah. All right. So let's jump in and talk about diabetes.
When you're training with a six foot both staff and you are not six feet tall. What does that do to your blood sugar? I mean, I'm assuming that there was a lot of planning that had to go into that and you really had to stay on top of things.
Brec Bassinger 9:24
Fortunately, like I exercise a lot so I know how to regulate my blood sugar cuz definitely like when I'm more active, it causes my blood sugar to drop. But with the stunt training stuff, it's a lot of just staying still and moving the staff around me so bad and it actually dropped my blood sugar. It was more trying to figure out like on fat I was working like one day I work 20 hours obviously that messes with my blood sugar and I really just have to learn to accept the circumstances and some days I was gonna have highs and lows and stop beat myself up about it because I I was I was working hours that aren't humanly normal.
Unknown Speaker 9:59
Can you share your diabetes management. Do you wear a CGM? Do you use an insulin pump? That sort of thing?
Brec Bassinger 10:04
Yeah, so I've always done insulin injections. I have my pin and actually have a half unit pin, which I got this past year, which has been really helpful. And then I have a CGM, a Dexcom.
Stacey Simms 10:14
Oh, and when did you start using that, if you don't mind me asking
Brec Bassinger 10:17
two years ago,
Stacey Simms 10:18
so it's pretty recent.
Brec Bassinger 10:20
Yeah, I started living by myself. And it was either that or one of the diabetes service dogs. And I had the CGM for the very first time I was like, Okay, I can't imagine a life without this just for safety reasons. And my mom wanted me to have something where she could feel more secure.
Stacey Simms 10:36
I was gonna say who gave you that choice because as a mom of my child,
Brec Bassinger 10:40
still in high school, especially during that time, I was having so many lows during the night, actually, when I started eating really healthy and working out a lot but because of that, I was just having lows all the time. And she's like, I do not feel comfortable. You living by yourself with all these lows. This is not safe. And so
Stacey Simms 10:57
do you share with your mom like she just said does she see your number Is that not Yes,
Brec Bassinger 11:01
I share with my mom, my dad, my boyfriend and my fellow diabetics with OnStargirl with me in Cameron Galvin, we have each other's follow apps. And that's really fun.
Stacey Simms 11:12
Well, there's another person with diabetes on the show.
Brec Bassinger 11:15
Yes. And we're both superheroes on the show. I'm like, come on.
Stacey Simms 11:18
So did you know each other before the casting?
Brec Bassinger 11:20
No. Well, that's the thing we had never met. I had a film something with one of my one of my friends. And she had reached out to me, she was like, Hey, can I give this guy your number? Like, you know, type one diabetic. He's talking about when you involve with Jr. And I told him, I thought you were so can I get in your contact info. So I got this random text like saying, Hey, are you going to the walk next month, if you are about to join you and your friend, Christina. And we just like it kind of sprinkled away. We never connected again. It just never worked out. And then he booked it in like, he goes to give me my number. And we're like, oh my gosh, we talked like three years ago. And he's like, Oh, it's all coming back to me. So it was like Cuz we hadn't met, we had talked it was really funny and weird.
Stacey Simms 12:03
That's great, though. I mean, obviously not everybody who has diabetes is going to be friends. Right? I have my son accuses me of that sometimes like, Oh, you should meet this person. But it's like it worked out really well.
Brec Bassinger 12:15
But I have to say like, I, maybe this is like an optimism or not not just rose colored glasses. Definitely. Every time I need a diabetic, they're the best person to my eyes and like, Oh, I lost them. We go through the same things for soulmate best friends, at least with my experience. Yeah, like I said, first podcast is might be a part of that as
Stacey Simms 12:35
well. I think it's more, you know, a 15 year old boy doesn't want his mom making friends for him. Right. But everybody could definitely do that.
Unknown Speaker 12:44
So all kidding
Stacey Simms 12:45
aside, though, I'm sure you don't talk about it all day on the set. I don't want to imply that you do. But has it come in handy. I mean, do you both kind of help each other is there is it just a kinship and a friendship on set.
Brec Bassinger 12:58
I think it's more of having Got companionship, that person who understands when we're on the 17th hour of work and they bring out another snack that just is carbee. But we're hungry and sleepy, but we don't want to eat all these carbs and just being able to look you get like look at each other and talk to each other and understand that was just so nice to have.
Stacey Simms 13:18
And you're both Well, obviously you're playing the superhero, but the other actor is playing a superhero as well.
Brec Bassinger 13:23
Mm hmm. Yes. Okay, so that
Stacey Simms 13:24
will lead me to my one of my questions. I had a couple of listeners who wanted to know if you have any issues wearing diabetes technology under the costume.
Right back to her answer, but first diabetes Connections is brought to you by One Drop, and 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 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. Right back to my interview. I'm asking Breck about wearing diabetes gear under the costume.
So you don't wear an insulin pump. But you were a CGM. And the Dexcom is just a little bit of a raised bump. Do you have to do any accommodations for that? And I know it can be personal So
Brec Bassinger 14:44
no, no, I'm, I'm an open book. When I was doing the cuts to the costume. It took in about 12 to 15 sittings hours and hours upon work like dozens of people touched and worked on it. And while we were doing the city I saw the G five which was bigger than the G six. It's still small but bigger. And they're like oh, but you can take that off. And I was like I can, but I'm not going to because I just I for safety reasons. It makes them feel more comfortable. It helps me like everything in Lj the costume designer, she was super understanding. But yeah, I haven't come my super suit is super tight. So I'm sure if you watch close enough in the series comes out, you'll be able to spot it sometimes but like it is what it is.
Stacey Simms 15:30
Well, you just gave a challenge to everybody with diabetes in their family watching they're gonna be freeze frame. I know.
Brec Bassinger 15:37
You're gonna be able to see it. Fortunately, I think a lot of times they would go in and edit it out. We do have that. Oh, yeah. And editing budget, which makes it nice, but I like some of the episodes I've watched. I've spotted it. So I'm so curious to see if other people will be able to as well.
Stacey Simms 15:52
And let me ask you about Cameron, if you don't mind. And again, this is too personal. I'll take this part out. Let me ask you about Cameron, just as he were up. pump for CGM, can we be spotting for stuff on him?
Brec Bassinger 16:02
Yeah. So see, I know he's had more experience in like the pump world than I have. I've never had one. So that doesn't take much. I'm not exactly sure. I know he was more lenient to take it on and off than I was. But that would be a question for him. I'm not really sure.
Stacey Simms 16:20
All right, well, we'll just get a remote controls that will just stop it as the show goes. That's really funny. Yeah. You know, it does have to be difficult because as you said, there's crazy hours, they are feeding you, but maybe it's not exactly what everybody wants to have at those long hours. Those long days. As you mentioned, the carves, you've been in television for a long time. I mean, I'm curious, are you able to talk to people on the set and say, you know, I really would prefer this or I need that or is it just a question of you kind of finding your way through what's out there?
Brec Bassinger 16:51
I have a couple things with that. It's really interesting. As an actor, it's so easy to get this diva persona you ask for anything in someone gonna call you a diva. And so I always felt really bad or that I couldn't ask for things because I never, I never wanted that. But then at some point, you have to realize there's people there that want to help you that will help you. It's their job to help you. And so walking onto this site, I made a pact with myself that when I needed help, I wasn't gonna be afraid to ask, because of what other people were going to think just for my own health, I say health as well. And so I went into the show with that new like perspective, and it definitely was helpful like, we have like a craft service guy, who who provide all the snack foods, and I became best friends with him. And they were absolutely amazing to me, they would get any like if ever there was a time I wanted something special. They never made me feel like a diva for asking for it, which is so great of them. And then also Karen and I share something else we both actually have celiac disease as well. So our diet is extremely strict and once again, not health that's not me being like a diva like Oh, I can't eat gluten because I don't want to it's I I can't. So once again, like I think maybe having these health issues makes it easier for me to ask because I kind of have an excuse. But it still was difficult to like, get over that hump.
Stacey Simms 18:13
Well, and I know that there are going to be younger people, maybe more than usual listening to the show, because you're on it. And I'm so glad you said that, because it's very difficult to ask for things. Right? It's difficult to say, I'm different. I need nobody wants to be a bother or as you're saying, like a diva. You know, nobody wants to be perceived that way. And I'm curious, were you always like that? Or you said you made a pact on this show? Do you feel like it took you a while to build up to have the confidence to ask for those things.
Brec Bassinger 18:42
100% I have to give a lot like living by myself for the first time. I think living in LA as I was 18 my mom and dad prepared me as much as they could, but it's hard living by yourself. And I think that's the time when I really learned to not be like diabeetus I, that's the time of my life that I learned that it's okay to ask for help. But it took practice, I think asking for help. It's a skill that you have to work on. And sometimes you have to swallow your pride. And sometimes you have to feel like a diva or needy. But in the long run, if you can do that, you'll be so much happier.
Stacey Simms 19:17
That's fantastic. I know you've gone to jdrf children's congresses, and you've been very involved with jdrf What's it like for you when you meet these kids? Because they're so excited to meet you. You know, there's somebody on TV who lives with type one and goes through what I go through and take shots and has to put the CGM on and their mom worries and wants to follow just like my mom. Is it still for you talk to these kids?
Brec Bassinger 19:38
Oh, yes. Like I said, maybe it's a rose colored glasses. But every time I meet another diabetic, I have like, this instant connection with them. I'm like, Oh my gosh, do you miss drinking a regular coke without having to pay for it for the next 24 hours? Like, oh my gosh, I can't remember the last time I did like, it's so funny. It's like what I like when you can connect to someone on such a personal thing. Like it's just fun and then yeah Like, I was a kid with diabetes, and so like, being able to, like, have these things that I've learned throughout the years and kind of helping them like if they've had questions, I think, oh, I've been in your shoes. Let me tell you what helped me. Hopefully it'll help you. I mean, all bodies are different, but kind of like that older sibling. I think that's so fun.
Stacey Simms 20:19
Yo, I wanted to ask you, and this may be a really dumb question, but I'm gonna ask it anyway. I wanted to ask you, there was a movie that you were in and I couldn't see it. I'm sorry. I don't do any kind of horror movies. I don't do scary stuff. 47 meters down on K. Yeah. Right, which was water and scary and AR and was that and again, I don't know anything about how they make movies. So I don't know maybe it was in a swimming pool. But was that hard to film with somebody who has type one I did that presented a unique challenges.
Brec Bassinger 20:47
That was the best experience for me. It's because I actually never was in the water. Not once the filming process that you were in the water was insane and like in hindsight, Cuz I actually originally auditioned for one of the main girls but whatever it was maybe I wasn't right for it shooting schedule a Stargirl didn't align for whatever reason I didn't get it, but they, they offered me a smaller like, I'm like the mean girl in it. And in hindsight like it would have been a really big team to overcome having to be under what they were under water for eight hours a day, I'm sure like, my blood sugar would have I would have figured it out because I refuse to let it stop me from doing anything. But it definitely would have been a battle that I haven't had to deal with yet.
Stacey Simms 21:33
All right, sorry. For my ignorance. I find seniors I'm sure it would have known that but there's no
Brec Bassinger 21:38
okay, every like every time someone finds out, I'm like, how'd you get killed by a shark? I'm like, I don't get killed. Like, oh, you're the one that survives the shark. I was like, No, I never see the shark.
Unknown Speaker 21:51
Totally Okay, I got it. That's hilarious.
Stacey Simms 21:53
Oh my god. That's too funny. When you were diagnosed, you were eight years old. And I'm curious. Did your family meet other people with diabetes right away. Did you do the jdrf walks and things like that? Or did it take you a while to find people?
Brec Bassinger 22:06
I got involved with jdrf pretty quickly. I think I was diagnosed in January. And I think that October I did the walk. And that was actually I think the that year was the year I was most involved with jdrf not talking about like, recent years like ambassador, things like that. But we raise so much money, we had a team of like 40 people come out and all walk with like breakfast buddies shirts on pretty instantly I got involved with jdrf they've always been that sense of community for me, and I'm so grateful for them. Actually. Funny enough, I think when I was kin to be chosen for children's Congress is one of like the type of kids that goes you have to like write an essay. And I wrote an essay trying to get chosen and I didn't try it. Eight years later, or nine years later, whatever it is, I got to come as like one of the people speaking on the panel and one of like, the role models for all the kids who got Cuz I'm like, wow, that's full circle. I felt so blessed. It was such a cool like thing to look back on. That is
Stacey Simms 23:06
great. Oh my goodness yeah children's Congress really is incredible. So your schedule for the next couple of weeks months is going to be bananas I would assume How does it work? So the whole the whole series is shot.
Brec Bassinger 23:19
Yeah, so we shot for eight months last year and actually like the past few months has been pretty not busy for me because I'm just we call it the hiatus and we're waiting to hear about season two. So fingers crossed about that. But right now it's kind of like the waiting game and then I imagine I'll start doing press promoting first season I heard I can't talk too much about it. But I've heard about me getting to go to some of those conventions like similar like Comic Con or writer con things like that. And I'm just like, above the moon I think that's the coolest I'm so excited. Yeah.
Stacey Simms 23:53
Well, and you know, superhero movies of the whole genre is obviously goes without saying is so huge right now. Is this something that When you were younger, that I mean not even as an actress because it means are great roles to play. But as a consumer did, is this your thing? Did you go to these kinds of movies? Did you are you into comic book characters,
Brec Bassinger 24:10
so I never read comics growing up, but I've always been like the first one to go see the comic movies that come out. That being said, though, like, I remember one day on set in particular, I was in a harness, because I was supposed to be flying in the scene. So I was in our green screen room on set, hanging in this harness in my superhero costume with this like custom, beautifully made cosmic staff. I was like, Oh my gosh, my dreams have been made. I did not know this was my dream. But this this exact thing is my dream. He must
Stacey Simms 24:41
be wild to work in the green screen setting. So I mean, as an actress, you know, you don't know what's around you.
Brec Bassinger 24:47
It is so weird. I had never done anything like it before. And so in it, there's their strike. he's a he's a 15 1615 or 16 foot robot and while we had a practical one, any Time like we were fighting together, or a lot of times, if we were in random places just talking, it was all CGI. So I was talking to that tennis ball. Like if you've ever watched like BTS videos like, I had that as well. And I'm really I'm really hoping from many reasons that we get picked up for a second season, but particularly because like, I'll have watched the whole first season by the time we go back to phone. And so I like when I'm talking to that tennis ball. I'll know exactly what I'm talking to. For first season. It was pure imagination. I was just doing the best I could. I was like, What second season I would have more point of reference, but it was it was definitely hard, but it's really, really cool.
Stacey Simms 25:38
I'm gonna dive in. We're gonna start wrapping it up here. But so here's a question I got from a listener. It's actually from Jessica wanted to ask her her daughter's question. And this is a might be a tough one. She wants to know why you like acting. This young woman is nine years old and has typed on herself.
Brec Bassinger 25:54
Oh, why do I like acting? It's funny. So the only Everything I've ever wanted to be in my life was an astronaut because I thought the moon was made of cheap. And then when I found out the moon wasn't made of cheese, I said, Well, I don't want to be an astronaut anymore. I'm gonna be an actress. Like little six year old Breck was running around and people will be like, why do you want to grow up and I'm like, I don't want to be anything, I'm gonna be an actress. And so I feel like it really was just put in me. And I think I love it. Because the way it stimulates my creative side, and also the way it makes me, it's created this, I'm able to have empathy for other people in my work. So like, as I take on another character, I feel like while studying and becoming this character, I learned so much about the world and different people in it. Just that I'm such a people person. So it's like a job where I literally get to play other people and learn about people is such a perfect fit for me.
Stacey Simms 26:52
And before I let you go, I don't want to make too much of an issue of it. But I do think it's worth talking about that in the last few years. It's been really Nice to see a lot of the superhero shows and movies be led by women. I mean, this show is Stargirl. And I think that's just phenomenal. I'm so excited to have young women and little girls watching this show. Does it make you a little nervous though? I mean, when you're filming this Did you kind of think of the back your mind, I'm gonna be somebody's role model. Somebody is Halloween costume.
Brec Bassinger 27:22
Unfortunately, I feel like fell on the Bulldogs, which was the Nickelodeon show I was on for a couple years, like prepared me for that or prepared me for this. Like I played a female quarterback, very strong female lead. I had girls dressing up for me of Halloween. So I think that was like a good stepping stone for what the school be. I mean, I'm not sure what this will be. But I hope it's big and I hope girls are watching it and feeling inspired. I feel prepared. I'm not scared.
Stacey Simms 27:49
Yeah, that's a great point because that show was terrific. And really was it was different to which was fun. You know, it really was different light. brick. Thank you so much for talking with me. Please tell kameron that we said Hi, and we're excited to watch the both of you on this show. I really appreciate you spending some time with me. We'll be looking for the CGM outline. And I hope we get to talk again. Thank you so much.
Brec Bassinger 28:13
Thank you. Good to talk to you.
Unknown Speaker 28:21
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 28:26
You can find out more about Stargirl and about Rick, just go to Diabetes connections.com and click on the episode homepage. We have transcriptions. Now I've been adding for 2020 and hoping to go back into that for many more episodes. But if you know someone who would prefer to read the show, rather than Listen, you can send them to the episode homepage. You should all be there along with the clip I was telling you about earlier and some more information about BRAC I think this is going to be a big hit. I'm so excited for her and I will follow up and see if we can talk to Cameron as well. nice thing to have support and somebody who gets it on the set. All right up next is tell me something good but first diabetes Connections is brought to you by Dexcom. And you know when you have a toddler diagnosed with type one like we did you hear rumblings for a long time about the teen years right over the treaded teen years, but it did hit us a little early. And I was really glad that we had Dexcom Benny's insulin needs started going way up around age 11. He looks like a completely different person. I was going through photos, my cousin was asking me to send some photos for an event that she's having. So I was going through photos from three to four years ago, right when he was in the swing of this right at the beginning. He looks like a completely different person. He's probably grown six or seven inches just since age 11. I don't have to spell out what else has happened. He's shaving. I mean, he looks completely different. It's so wild. But along with the hormone swings, I just can't imagine managing diabetes during this crazy time. Without the Dexcom continuous glucose monitoring system. We can react more quickly to highs loz see trends and adjust insulin doses with advice from our endocrinologist. I know using the Dexcom g six has helped improve Benny's agency and overall health. 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.
In Tell me something good This week we have some great stories from athletes. I'm going to start with Zoe cook. She was told by a coach when she was younger that she would never be an athlete because of type 1 diabetes. So he says she was diagnosed at 10 kicked off the competitive swim team because the coach said she was too high risk that in middle school when she was 13. Her test coach told her that because she went low running sprints, she would have to leave the team. That was the coach who said she would never be an athlete. So he says she's really glad that she had parents who could tell me he was ready. Wrong way to go. So we and she also says that last year she ran the New York City Marathon with her mother who also has type one way to go. So we and way to show that dumb coach. You know what things really are all about. It is amazing how I always think that that's ancient history, right that someone will say you can't do this because of diabetes, but it still happens and we still have to advocate for our kids. Or if you're living with type one I know you know, you have to advocate for yourself. And you know, we'll get there. It's just a lot of education. Julie's Tell me something good is herself. Julie Raiden has been type one for 53 years. She posted all her wonderful numbers. She has a pretty extraordinary one c 4.9. She has incredible time and range and she is 61. If you listen to the show, often you know that I don't often share numbers. We all do this on our own way. But man Julie, I wanted to share that because I can't even imagine how hard you work. Good for you. She also is a hiker and stays very active. I did ask you I sent a note back and I said, What's something you didn't think you could do when you were first diagnosed that you have been able to accomplish? And I thought she would say, you know, hiking or staying active or something like that. And she really hit it on the nose when she said, I hate to say this, but successfully living to 60. I was always told I wouldn't. So that does give you perspective. Julie, thank you so much for responding and sending that in. I appreciate it. And finally, Mike Joyce. Mike shared that last year he hiked 2200 miles from Maine to Georgia. And this year, he is going to hike the Pacific Northwest trail that's a 1200 mile trail from Glacier National Park to Olympic National Park. I think I've profiled him before or mentioned him because I remember this last year when he was on the Appalachian Trail, right Mike? He says he uses a phrase of the inhaled insulin and packs a ton of food. Remember this Mike, I'm gonna have to look you up and put up a link from from last year when we talked about this. And he sent me some pictures that I'll share on social media. And one more story for today. Something good. I got a review that I wanted to share. I sometimes share reviews, I get reviews on podcast apps like Apple podcast player or whatever, you know, there's a bajillion of them. And it's always wonderful to get a nice review. So I appreciate that if you want to do that, you know, I love it. Thank you so much. It does help the show. But you know, frankly, Apple podcasts is kind of a pain to leave reviews on. But I got one that made me really smile and I wanted to share it. T Piper writes, Stacey is a diabetic. I love it. Thank you for being so Frank and direct with the head of Dexcom. You are our voice and we are so grateful. Our family is so appreciative. You know, that refers to the Dexcom interview we did recently, I believe about the CGM in the hospital. And if you haven't heard, I did ask about assistance, financial assistance during this time because other companies are doing that with Dexcom follow suit and they said at the time while we're thinking about it, we haven't done anything. And more recently, they did announce Some help so I will link that up as well. But t Piper, that's very cool. Thank you very much for that review. I have to tell you it made my husband really laugh. I showed it to him and he thought that was amazing. A diabetic, I appreciate it so much. All right, give me your Tell me something good stories. I love to share them on the show. I post in the Facebook group all the time, or you can always email me Stacey at Diabetes connections.com.
Working on a couple of projects behind the scenes, if you have a homegrown diabetes, a company or a smaller diabetes company and you are looking for advertising, I'm going to be posting in the Facebook group and probably on the public page as well pretty soon about a new project that I'm working on. And it's an opportunity for smaller companies to get attention from the type 1 diabetes community so be on the lookout for that. I'm very excited about it. I already have a couple of partners on board and you know, we're just going to keep moving forward. Things do not look the way we thought they would look this year. But we have no choice but to keep moving. And thank you all for all of the support you show not only by listening, downloading and sharing the show, but by taking part in the zoom chats that I'm doing by just having the community in the Facebook group. It really helps me personally, I just feel better about things and I hope it's helping you as well. thank you as always to my editor john Buchanan's from audio editing solutions, who is slam packed jam busy Is that even a word phrase? Because everybody wants to do a podcast now and everybody wants to do one, you know, remote at home and doesn't know how to do it. So they're all calling john and he's really busy right now, which I guess is good. There's another silver lining. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week.
Brec Bassinger 35:48
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged.
Transcribed by https://otter.ai
Country Star Eric Paslay is on his Nice Guy Tour right now, performing around the US and the world. He talks to Stacey about managing type 1 diabetes on the road.
Stacey & Eric also nerd out on podcasting a little bit.. he started his own T1D show – Level With Me - earlier this year.
Tell Me Something Good this week… so much creativity this diabetes awareness month! Did you see the Bachelor with Diabetes. And an elementary school rallies behind a student with T1D.
Thanksgiving episodes Stacey mentions:
Get the App and listen to Diabetes Connections wherever you go!
My guest this week is country music star Eric Paslay. He is touring right now I caught up with him, tpaslay his is several weeks ago actually but there's nothing dated here. I wanted to talk to him again. He was first on the show back in 2017. Because in addition to being diagnosed with type one at age 10. He is now a podcast host. He started Level With Me this year. I'm not sure if he's coming back with that or if it was a one season thing when we talked to him quite worked it out. It's a branded podcast with Dexcom. But we had fun talking about the technical side of podcasting, and what he got out of meeting so many people living with type one. So here is my talk with Eric Paslay.
Eric, welcome back to the show. I'm excited to talk to you again. Thanks for joining me.
Eric Paslay 7:29
Thank you, Stacey. Good to be back.
Stacey Simms 7:31
Alright, so put your podcaster hat on. And I wanted to talk to you about that. Because truly, you know, doing a show like that is such an incredible experience. I'm not sure people realize how much fun it is to be on this side of the microphone, you know, talking to other people going through experiences with type one. What was it like for you to do that?
Eric Paslay 7:54
It's just it was it was a lot of fun. I mean, you know, it's fun to get to talk to people. There's so many awesome podcasts. out there about juvenile diabetes, and you're a rock star with Diabetes Connections. And I think it was just fun doing Level With Me we get to go visit people, at their houses where they're at. And kind of you kind of hear what life's like with diabetes. I think a lot of times it's either you have diabetes, the world's ending or I'm overcoming and that's on everything, you know, I can do anything and a lot of times you don't talk about the in between and and I think that's what these podcasts are great for is just talking about these things happening. And with level with me, we just got to talk about real life of, of how spouses and parents like you know, you have a 14 year old son with diabetes, being a parent and just kind of all the day to day activities and things that you did to deal with having diabetes and it was just it was a lot of fun. As you know, there's just incredible people all around the world and it's fun meeting up with type one diabetics that really live life to the fullest.
Stacey Simms 8:57
As I said, though, it's a different hat for you to wear well. What made you want to do something like this?
Eric Paslay 9:03
I'm not just talking about, talking helps people get used to talking about stuff. You know, I mean, I think there's a lot of type one diabetics who hide it from the world. And it's like, how you go to work and no knows you're diabetic? What if you actually do have a crazy low sugar level happen? What are they going to do? They're just going to not know you're diabetic. You know, I think a lot of people are afraid to talk about it because they're either ashamed or they think they're not tough enough and it's like, you should be excited. We're like living in a time where we're we're getting to survive as diabetics.
But you know, I'm not afraid of a microphone on and when we thought, hey, let's let's do a cool little podcast. I was like, sign me up. That sounds like a good idea. And, and it sounds like a great way to get to meet great people and, and just spread the news that you really can't do anything. With me traveling around on the road all the time. It's crazy, crazy, crazy life. of just traveling all the time. Not a lot of people, Lot early flights, late shows that it's cool. Just getting to talk about all the devices I know y'all talk about with the CGM Dexcom and insulin pumps and just all these cool things that really help you live life and not let diabetes get in the way too much.
Stacey Simms 10:15
Yeah, let's talk about that. Because you know, you've been on the show before and shared a lot about how you do it on the road. But tell us a little bit about your routine these days with those early flights. As you mentioned, it's kind of a crazy schedule. Anything you've learned that you can pass along.
Eric Paslay 10:27
I don't know protein bars don't have tons of carbs but they let me cruise for a good time. I've learned that, you know, I think it's it really is finally getting a CGM. It's like truly life changing. It's you hear the beats that beep beep bepp and you go Okay, I need some sugar or the beep and go Wow, my insulin is not working. You know, Everyone does that sound you know, in the middle of the night they're like, Oh, no. What do you think? Protein bar time.
When did you start wearing a CGM?
About a few years, and it's truly life changing, it's it really is mind blowing thinking 100 years ago, they figured out these proteins make a thing called insulin and keeps us alive. And to think that there's we're holding a small TV in our hand that tells our blood sugar level. Yeah, I mean, that we can share with friends on a phone is crazy. It's it's truly amazing to see how science and just it's just amazing science and technologies coming together. And it's exciting to see in the next even 10 20, 30 years, what happens with taking care of diabetes and just all kinds of sicknesses, just all the information coming together and people figuring it out. And you talk about on your show. There's just so many cool things happening. I got to do an amazing tour at Vanderbilt here in Nashville a couple weeks back with Dr. Powers. He's my doctor here and it's just exciting to see people doing such amazing research, trying to figure out the immune system And everything with beta cells. Everything that a type 1 diabetic is made out of, trying to reset all those things. It's cool to just just hear how many people really are out there trying to figure out a cure. And until we get a cure, figure out amazingly just easy ways to treat yourself.
Stacey Simms 12:17
I'm curious with the CGM, you know, because you were diagnosed it 10 right? Yeah. What your mom and dad might think of a CGM. Do you share with them now as an adult?
Eric Paslay 12:28
No, I don't sshare with them now see how they're fine. They (laughs). I share with my wife. Now I share with my wife so she knows where I'm at when I'm on the road, you know, early in the morning, she can check and see if my blood sugar levels cruising. And I share with my band so my tour manager watches my blood sugar level on the road while I'm on stage. And that's insane. It's amazing. He’ll let me know over our in ear monitors were note the crowd doesn't even know what's happening. He'll be like, Hey, you got an arrow down. Orange juice, you know, I'll go over and drink out of Dixie cup. The crowd thinks I'm just partying along and I'm, I am I'm making sure the party keeps going and get some sugar in me. And it really is amazing. It's like a magic trick and I think back to 20 some odd years of finger pricks and and thinking how much picture I really didn't know like really what was the patterns of my blood sugar level and getting to see that on a graph now, but with the CGM it’s is truly amazing and, and I think, hopefully, you know, adding more years to my life with with taking even better control of my blood sugar levels.
Stacey Simms 13:36
Let's talk a little more of the podcast because one of the really nice things about yours is you're able to get out of the studio, you know, if you haven't listened to half the show, he he kind of meets with the people he's talking to or hangs out with the family for a while and then the second half, they're in the studio. So it's a really nice mix. And I'm just I'm always curious from a technical standpoint, how are you doing the stuff on the road? I'm gonna get technical here. Are you wearing a mic? Do you have a crew How's it all work?
Right back to Eric in just a moment I'll answer that question. But first diabetes Connections is brought to you by one touch handwriting your blood glucose levels is the ultimate throwback, the one touch Vario flex meter seamlessly syncs with the free onetouch reveal mobile app to create your dynamic electronic log book. And when you choose the onetouch reveal mobile app, you'll be joining thousands of other people living with diabetes. In fact, as of this past October, one touch revealed was the number one downloaded diabetes management app in the US, Canada, France and the UK to upgrade today to the one touch Vario flex meter and onetouch reveal mobile app, visit diabetes dash connections.com and click on the one touch logo. Now back to Eric talking about production of his podcast.
Eric Paslay 14:52
Yeah, there’s a crew, they go out, hang out with the families that we're talking with and just kind of get the sounds of their life where they're at their family. He's running around. I think a lot of times when you're in the studio you can talk about it but you don't really hear the sounds of real life happening sometimes and it shouldn't really is just a just a sweet moment where we get to go and hang out at people's houses or where they're living and hear everyday sounds of being there. I think it helps people who’ve just been diagnosed or that had been diagnosed for many years to realize you're not alone. And there's a lot of people going through type one diabetes and there's a lot of spouses and kids and family members who have one people they love with Type One Diabetes and just how do you live with that every day. And and it really is, I think it's a really cool thing that we get to do is go hang out with the families for the we saw on the national need to hang out with Blackbird Studios here in Nashville where tons of bands record every year so it's fun for them to come see that and I get to tell him some stories of hair cut my album in here and that is fun. It really is one thing on the podcast I always try to make sure is like you Not just dealing with diabetic, you're a human being like, you're not just to do that back your mother, your father, your brother, your sister, your professional, your student. And I that was one thing I always try to make sure people remember that they don't just wear I'm a diabetic t shirt everywhere they go. It's like no, you said one ingredient of your life, not your whole life, even though it definitely is a big part of how your engine runs. But just making sure people don't just categorize themselves only as diabetic.
Stacey Simms 16:30
Yeah, that's what I say to a lot of parents Remember, you're raising a child, not a number. You know, worry less about that straight line and more about is your kids happy.
Eric Paslay 16:37
Raising child not a number. I love that.
Stacey Simms 16:40
And this is really a dumb question for people who are not in podcasting or in broadcasting. But I'm always curious, is there different mic technique? You know, when you're talking into the microphone and interviewing these people, and then you're singing or playing instruments, you know, are there different things that you need to do in the studio?
Eric Paslay 16:57
I don't, you know, talking to the mic, and I mean, Singing a lot of times, you know you do the vocal set maybe I'll try the vocal fade while the next podcast be like it's so far away from you. When your blood sugar levels everybody wants to be how do you level with it? I mean, it's just like we were just talking with this podcast right now and it's amazing just the technology we have from, from lapel mics where you can hide a mic on you to just a big old studio mic that you've used in radio for years. It's, there's so many cool ways to do it. It truly is amazing, just, I mean, and there's so many podcasts out now from anything and it's just so easy to really record a podcast these days with a computer and a home studio and, and all that and it's, we always joke in the music business. The coolest thing about a home studio is you have a home studio. The worst thing about studios, you can have a home studio. Is it good for music? Is it bad for music? I don't know. You know, there's a lot of music, but it's it really is amazing To do this right now people getting to hear to their little speakers wherever they're flying in the sky or driving the car, on their smartphone to watch them the device being when you're when you're hopefully cruising on a good good level.
Stacey Simms 18:15
So you know you mentioned making music of course we haven't talked about that at all. Are you still having fun? What's you know anything new?
Eric Paslay 18:24
Heck yeah. earlier today I've been talking about going on tour and Europe here soon and get back for a few days in Nashville and then Australia for a week. And just traveling around we've got a live album from live in Glasgow that's coming out we recorded it last summer in Glasgow, Scotland and have all the hits I've written for myself other people so we'll have the five number one songs on there and it's great and excited for that to come out and people get to hear the whole band and hear us live. Fun show have a great crowd and Glasgow Scotland and and then I've got an album that we just pretty much are mixing and kind of putting the final touches on that'll be out probably early next year. So got a live album in a studio album that are coming out and I'm excited to go tour and and play these songs and, and people get to hear how great the band is when we come to your town here. But a lot of really, really exciting things happening.
Stacey Simms 19:21
Keeping busy man, thank you so much for joining me. I really appreciate you spending some time Welcome to the world of podcasting. I'm so glad you did it.
Eric Paslay 19:29
You saw him on American Idol, now Jackson Gillies is using his spotlight to educate not only about type 1 diabetes but about another, more rare condition he’s lived with since he was 13.
It's a painful skin condition called Hidradenitis Suppurativa or HS. It’s not as rare as first thought, but most people with it are too embarassed to seek help. Jackson is trying to change that. Of course, we’ll also have some fun talking about American Idol.
Plus.. you’ll hear from Benny this week – we talk about the changes we.ve made in management and the really great results we’ve seen. Stacey's son switched to an untethered regimen last fall using long acting Tresiba with their insulin pump and his A1C has come down significantly.
And in Tell Me Something Good – family diabetes camp and some volunteer efforts outside the T1D community.
1:30 Stacey welcome - she shares some of Benny's progress
4:00 Interview with Jackson Gillies
30:00 Stacey interviews Benny
44:30 Stacey talks in more detail about the untethered regimen
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The Fox TV show "The Resident" takes on type 1 diabetes and gets it right! This week's episode "The Prince and the Pauper" features two plot lines about diabetes. Stacey speaks with the co-executive producer Andrew Chapman on why this issue and why now.
Chapman lives with LADA (Latent Autoimmune Diabetes in Adults) also known as type 1.5. He tells Stacey there are two other people with diabetes on the writing staff.
Learn more about LADA in previous episodes:
Game show episode: Wait Wait Don't Poke Me! (From July)
Also this week, what researchers are learning about OpenAPS – the do it yourself closed loop – from Twitter conversations! Read the study write up here.
1:25 Stacey Welcome
5:00 Interview with Andrew Chapman
35:00 Movie & TV T1D Mistakes (other shows and movies)
36:30 OpenAPS and Twitter: a new study (and Stacey shares her social media policy)
41:40 Stacey will be in Syracuse middle of October
42:40 Stacey shares field trip stories (Benny is on one this week)
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"Open Up Your Bag" is a new children’s picture book about diabetes. The story behind it takes us into a great conversation with the author Mike Lawson. Mike was diagnosed as a young adult (after initially being misdiagnosed as type 2) and he shares stories about finding the diabetes community, getting involved in organizations like TuDiabetes.Org and Diabetes Hands Foundation and what led him to write the book and start Diabetes Doodles
Plus, a new resource for our community is now available in audio form. Listen to a bit of Bright Spots and Landmines, a diabetes guide by DiaTribe's Adam Brown
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! You can get Bright Spots and Landmines by using this link.
2:00 Stacey Welcome - Hurricane Florence update and "A Bad Case" is being released
5:20 Interview with Mike Lawson
36:30 Stacey talks about Big Blue Test (watch here)
38:00 Audio samples from Bright Spots & Land Mines
43:30 Stacey talks about Chia Pudding - it needs a new name!!
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Author KJ Howe is back with another book in the Thea Paris thriller series. Skyjack, the sequel to The Freedom Broker, is an action-adventure series where the main character, a hostage rescuer and seriously tough lady, also happens to live with type 1 diabetes.
**A few minor audio issues with this show. Stacey sounds like she's inside a tin can at times! Apologies, should be fixed for next week**
We find out why Howe decided to focus on diabetes for this series; she has a background in medical writing but doesn't have type 1 herself. She also shares tips for aspiring writers and talks about her annual Thriller Fest in New York - this year, George RR Martin is making an appearance.
Our community connection this week is Christine Fallabel. She got our attention with a column she wrote about not wanting to be anyone’s diabetes hero as well as talking about her marriage to someone without type 1. Christine is also the American Diabetes Association’s Director of State Government Affairs and Advocacy for the Mountain Region, covering 9 states.
2:30 Stacey welcome and talks about travel with Benny. He seems to think it's okay to throw all his diabetes gear on the luggage conveyor belt.
6:30 Interview with KJ Howe, author of Skyjack
30:00 Know Better Segment: WOCDiabetes expained
33:00 Community Connection interview with Christine Fallabel
56:00 Stacey talks about meeting George RR Martin during a Convention Q&A (read her write-up here)
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Austin Basis, best known for his role on TV's Beauty and the Beast, navigates a Hollywood career while living with type 1. Now he wants to reach kids with a new comic book about high school kids with disabilities who are secretly superheroes. Austin tells us about The Kinetix and how he and a few friends came up with the idea. Now they have a Kickstarter campaign to make it happen.
We also talk about growing up type 1 with a dad who owns a candy store, what made Austin want to pursue acting and how he manages diabetes on set and during auditions.
Austin interviewed actress Brec Bassinger for the 2017 People to Know issue of Diabetes Forecast Magazine. Brec was just on Fear Factor and we spoke to her last year as she attended JDRF's Children Congress.
In our Know Better segment, diabetes camps for grownups! Find out what Beyond Type 1 and Connected in Motion are offering up, as well as a Survive & Thrive summer program in New Jersey at Camp Nejeda.
And Stacey shares a bit about upcoming travels, including disclosures about JDRF Summits and the Lilly Blogger event coming up this week.
2:00 Stacey welcome and preview clip of Brec Bassinger on Fear Factor
5:00 Interview with Austin Basis
48:00 Stacey talks about summer diabetes camps for grownups
53:00 Stacey talks about conferences and disclosures
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