Halloween can be a challenge for many families touched by diabetes, but just imagine beng diagnosed ON Halloween. That's what happened to Kelly Kunik in 1977. In this "Classic" episode from 2017, Kelly shares her story, her family's unique experience with diabetes, and what led her to beginning her blog, Diabetesaliciousness, in 2007.
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Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by the world's worst diabetes mom real life stories of parenting a child with type 1 diabetes available as a paperback ebook and audiobook, read reviews and get your copy today at Amazon or at Diabetes connections.com.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:30
Welcome to what I'm calling a classic episode of Diabetes Connections. This interview originally aired Halloween week of 2017. But it's a really good one. And we have a lot of new listeners and a lot of people who might discover it now for the first time. So if that's you, Hi, I'm your host, Stacey Simms and my son was diagnosed with type one almost 14 years ago as a toddler.
And Halloween this year is going to look very different just like everything else in 2020. But I hope you find a way to celebrate Halloween that is safe, that feels good to your family. And as always doesn't let diabetes get in the way. If you have questions about Halloween, if you are newer diagnosed family or you just are confused, you want to try something new this year. We did a great ask the D moms episode about that. And I will link that up in this episode homepage, you just go over to Diabetes connections.com. And when you see this episode, click on it and it will have a transcript and it will have links and one of those links will be over to that ask the D mom episode where me and my friend and wonderful author McCarthy give advice. We get questions all the time and we answer them the best we can we did a whole episode about Halloween.
My guest for this episode is all about Halloween. Now. Not only was she diagnosed on Halloween, but she loves the holiday you're going to hear her family. I mean, they do it up big and they always have Kelly Kunis was diagnosed with type one in 1977, 43 years ago. And yes, you really was diagnosed on Halloween. She is a diabetes advocate mythbuster consultant, writer and speaker, Kelly launched her very funny and insightful blog diabetes deliciousness in 2007 with that goal of busting diabetes myths and spreading validation through humor and ownership and advocacy. She is also a daughter, sister, cousin, niece and and to people living with type one and type two diabetes. That incredible family experience really gives her a unique perspective. So here is my interview with Kelly Kunic on the eve of her 40th diversity with type 1 diabetes.
Kelly, thanks for joining me, you're one of the things I get a lot in parenting groups that I'm in is you know, what do I do about Halloween? And so we're gonna be talking about that this week. But I thought it would be really fun. And so just a good excuse to talk to you. To find out more about being diagnosed on Halloween. I shouldn't have said it'll be fun. It's always fun to talk to you, Kelly. But that's not fun at all. Thanks for coming on with me.
Kelly Kunik 3:11
Well, thank you for having and thank you for doing what you do. And I think Halloween is an excellent topic.
Stacey Simms 3:18
Yeah. Tell us your story. You were diagnosed. And I can't believe as we're talking here. You're kind of on 40 years for your diagnosis.
Kelly Kunik 3:25
Yes. Yes, I am. And that's crazy. And I can't believe it. And I just as shocked as you are. But yes, it will be 40 years with, you know, celebrating my type 1 diabetes diagnosis on Halloween. And it was interesting. And what I remember a lot of it, tell us, I just remember a lot of whispering that week with my parents and my siblings. You know, I have siblings who, who also have type one. And my dad had type one. And, you know, Halloween every year was a pretty big deal in our house. And it was up to my siblings to come up with my Halloween costume. or help me come up with it. Because there were so many of us. And I couldn't get them to commit. And I remember coming home from school one day, and my sister Debbie, who had diabetes and who had passed away from diabetes met me at the door. And she asked me if I was thirsty. And I was of course, and she gave me a tab. And I download it. And then she asked me if I wanted another one, which of course I did. And I download it. And then she asked me if I wanted another one.
Stacey Simms 4:44
And we're talking about tab the diet soda because just to be clear, right? I mean, right?
Kelly Kunik 4:49
That right tab the diet soda and I drank the third one and then of course I had to go to the bathroom. And she said well drinking I'm not going to let you go to the bathroom, unless you pee on this test tape, which was a way back in the late 70s to test what your sugar was. And I was smart enough to know that that wasn't a good thing. Because there was test tape in all of our bathrooms, because of my two sisters with type one and my father, and I looked at my sister and I told her I didn't have to go to the bathroom. Oh, geez. And I was a pretty stubborn little girl. And I refused to go to the bathroom for like an hour. And I was dying at that point. Like I literally was doubled over in pain, but I knew that something was up and that if I peed on that test tape, something was going to happen that I didn't want. And I finally you know, I did I like I said, I would do it. And it turned to color it shouldn't have.
And there were lots of whispers. And I remember my parents being on the phone with CHOP children's hospitals, Pennsylvania that night. And it was the night before Halloween. And I don't really remember a lot. But I remember the next morning we got up very early. And we drove to Philadelphia to CHOP. And I remember waiting in the registration office to register because as a patient because we'd never been to chat before. And then the physical exam. And I remember them hooking me up with an insulin drip. And I was trying to make my parents laugh. So I called it the Alaskan pipeline. Like luck bomb. It's the laughter pipeline. Look at me, I have my own Alaskan pipeline. But I really wanted to go out trick or treating. I wanted to go out and costumes, you can talk of all these different costumes I could wear and I love Halloween. Not just because the candy. I love dressing up in costumes. That was kind of my thing. As a kid. I was always dressing up in costumes, like if I could have gone to school in a cape. But back in the 70s it wasn't really acceptable. I was constantly dressing up in costumes. And I tried to convince a nurse who was dressed like a clown, that the results were inconclusive. Again, I watched a lot of television
Stacey Simms 7:25
you're waiting to hear. You're eight years old. You're trying to tell that the medical professionals around Yeah, because maybe it's not, you know?
Kelly Kunik 7:32
Well, I I used to watch Quincy, on answer Carol Burnett. Yes. And so I was I was just like, repeat everything that Quincy would say, I'd like to think the tests are inconclusive. And he just let me go out trick or treating. I promise you, I won't eat any candy. And my parents will bring me back tomorrow. But I have all these costumes lined up. And she looked at me and she said, Oh, honey, the tests are inconclusive. You have diabetes. And no one had said that. I said, Oh, okay. I guess I have diabetes, like okay. And I didn't really think that's when I started not to like clown so much. Yeah, and I remember them telling me that I could go trick or treating in the hospital. They could provide me with a costume, which was subpar. There was no way I was walking around in this costume. They had no creativity behind them at all. And then I could only get dietetic candy. And I was like, nope, no, thank you not doing that. I know what that is because of my sisters. There's no way I know, your stomach. You know that? What does to your teeth? I'm not doing it. And so I stayed in and watch TV, you know, and kind of waited till my parents left to lose it a little bit because they didn't want them to get upset. I could tell that they were upset and I didn't want them to get any more upset.
Stacey Simms 8:55
Tell you so much to talk about that you've said already here. But it strikes me now you've said a couple of times that you're trying not to upset your parents. You know, I mean, you were eight years old at the time, your perspective is different. It's your dad has had type one. You had other people in your family, sisters, other people in your extended family. Why was it so important to do you remember, it's just amazing how we try to protect the people around us. They didn't mean protecting you did you're though, you know you were the little kid.
Kelly Kunik 9:21
I think I knew from a very early age. I was one of six children. It was not necessarily a common household. You know, the six kids there were two parents. There were various extended family grandmothers great uncle's living with us, which was wonderful. It was a great way to grow up, but I knew the diabetes. I didn't know exactly what it was. But I grew up with it, if that makes any sense. And I knew there was a stress level involved with it. Even though I didn't understand it. I knew that some of my siblings and my dad would take needles at the table. Before they ate, I knew that our bathrooms were sort of set up like a lab with test tubes, and things like that, because they didn't test blood sugar back, then they tested urine. And your insulin was very, very precious, and a bit expensive. And I just knew that I like to make people laugh when they were stressed. And I think when you're the youngest child diabetes or not, that's kind of the thing. Just sort of become the comic. Because everybody's watching what you do. You're the youngest, baby. Oh, isn't that cute? She's so funny. You know, and I knew I couldn't articulate it. And I couldn't explain it. But I knew that it was big for my parents, this diagnosis or whatever was going on, because I couldn't even articulate it like I am now. But I knew that I knew they were sad. And they were trying to act like they weren't. You know what I mean? And I knew that for a fact. So I was trying to make it easier for them. And look, kids are smart. They just are, and they see, and they handle things in certain ways. And, you know, when you see your dad who's, you know, trying to keep it together, you want to make it easy for him. Especially when it has to do with you.
Stacey Simms 11:24
It just, it's amazing to me that and you're right kids know, they are much smarter than I think we give them credit for and even Benny at two was trying to make me feel better. You know, it's as hard to see your parent be upset. And that's it. You know, a kid wants to fix that most of the time. So even he do and that's what it is. Yeah.
Unknown Speaker 11:42
So So what happens on a Halloween,
Kelly Kunik 11:44
I stayed in and watch TV. I mean, I, I wasn't going to go out trick or treating in the hospitals. I had to have diet like guy they called it dietetic candy when I was throwing up. It's what it was called. And it was disgusting. And it caused a lot of gastrointestinal distress. And they had something like a jolly rancher type of dietetic candy that would make your teeth stick together. For like, five minutes, while it melted in your mouth, you could not separate your jaw. And I'm not kidding. It's God's truth. And it just wasn't worth it to me. I had tried this stuff, because my sisters would get it in their Easter baskets, or, you know, family friends would bring it over for them. And it was disgusting. And you know, when you're little, you don't know the difference. And you're like, oh, Chocolate, right? And it really did cause a lot of problems. And I knew that. Like, I mean, you learned it very young. Yeah, I didn't even have diabetes learned it is not good stuff. So I was like, I'm not a I don't have my costume choices with me. I'm not wearing these drugstore. Like I have a closet full of homemade patterns that are very good. And I'm not chick retreating. And working so hard for this disgusting candy. Most of it
Stacey Simms 13:10
was it was Halloween. Was Halloween ruined for you or the following year? Don't you dig out one of those costumes if I wake up?
Kelly Kunik 13:19
Oh God, I went to I never missed a Halloween growing up. The rule was like every other kid, I will give that credit to my parents. I never missed the Halloween. I went out with my pillowcase. Because that helped more. And we trigger treated for hours. I would eat some candy while I was trick or treating because we were walking like three miles. And then I came home, went to the living room, dump the pillowcase on the floor. Did the division like all the kids do? Candy? Like they like candy. They don't like candy. They would consider trading money. Because people would throw in nickels and quarters, boxes of raisins, which immediately hit the trash. And my mom would say, yeah, it's I mean, it was like any other thing. My mom would say, okay, what's the candy you wouldn't keep? And she would keep it. And we would figure it out like when I could have it. And then in a week or two, somehow that Halloween candy would disappear. Sometimes my mother would hide it after a few weeks in the top of her closet, or on top of the china cabinet, which kind of dipped in so you couldn't see what was laying on top she would put it or those cabinets on top of the refrigerator that holds nothing and are really hard to get to. But after a few weeks, just slowly disappear. And she'd say your your siblings ate it. Daddy must have gotten into it. You know my mother was a Chocoholic. I mean, but we always had fun. I always went out with my friends. And I give my parents a lot of I remember going to like Halloween party. somewhere maybe in fourth grade, I don't remember. But there was a cake. I think my mom even brought it. I think my mom bought a cake was ghosts on it was a big deal. And the ghosts were made out of icing. That was toothpicks. And I remember like, I won't want to go, but they didn't see I couldn't. And that was really smart of them. They didn't make it a bad day. They made it a fun day. It was a fun day. Halloween fun. They kept it that way.
Stacey Simms 15:28
Just wonderful. And it's just so great to hear. Did you have a favorite costume over all those years?
Kelly Kunik 15:33
Except that oh my god, are you kidding me? I was a gypsy, which was actually my mother's mother's costume from a Gilbert and Sullivan. Oh, she was an orator in England. So I had this beautiful like corseted top, that all the girls were in my family. And we I was Gypsy and I had a scarf and a big skirt. I was tigerlily for like two years in a row three years in a row. Maybe because I was obsessed to Tiger Lily did not like Wendy Darling. I could not relate. I thought Wendy Darling was a whiner. He thought Tiger Lily was a badass. And she kind of looked like me a little bit long, dark braids. And I have long dark braids. But she's who I related to. And I was her for two, maybe three years. I was a jack in the box. One year I won an award for that. most creative con. So yeah, I mean, I love Halloween. I don't. I think it's a great I still think it's a great holiday. So I don't know. Yeah. And I don't like when people and I understand why they say it. I shouldn't say I don't like but I always tell people to mine their words, when it comes to diabetes. Like Don't let your kids know that you're dreading it. Because it really is a fun hot day. But it's great not to be you for a night. You know what I mean? diabetes or not? Like it's going to be a challenge. But today they give away much more prize related gifts today than they ever did when I was growing up. And look, we are black that we can count carbs today. Nothing is off limit. Well, let's
Stacey Simms 17:12
talk about that. Let's go on. Let's just you know, we'll get on the soapbox for a minute because Kelly people who know you sure you have opinions. opinions are welcome. I have a radio friend who says agreement is not required. So let's let's just talk about it. You can say whatever you want here. Because as a parent of a kid with type one. Halloween is is scary and is your oh my gosh, everything's got to change. It says how do I do this? And then I have actually found if I could talk about me for a minute. The hardest part for Halloween for us has always been my well meaning neighbors, because I have a daughter who's three years older than Benny. And since the time they were very little we did Halloween just like you guys did. We get all the candy we put most of it away even without diabetes, you're gonna throw half that candy away or give it to the truth is the dentist or whatever. So my neighbor's bless their hearts. You know, those first couple years, they would say here's a Hershey bar for Lea. And here's a sugar free hard candy for Benny, you know, like, Oh, right. And I'm not letting my two year old eat a hard candy anyway,
Unknown Speaker 18:13
but Right, right.
Stacey Simms 18:15
Yeah. And some of them did have little prizes. I mean, I have one neighbor who always has a little toy for him. Like, you know, Penny toys is so cute and so nice. And I never said to people, you know, at the door on Halloween. No, thank you. We're not taking that sugar free candy. But you know, maybe a couple weeks later, when you're seeing them at the grocery store elsewhere, you can kind of work it into the conversation. But I always tell parents just go and like you said, you're walking so much half the time that they go low when they're out there, right.
Kelly Kunik 18:44
Yeah, I mean, like when I said I walked three miles at night, my hometown was only a mile long. Again, like, not really big, but we walked so much and for so many hours that my parents encouraged me to have that Chocolate bar because they knew I really needed it and I wasn't you know, when I was little to treat a low we would eat an orange. My mom didn't even bother cutting and wrapping an orange in tin foil. She said no, she's going to have she's gonna have a Reese's Peanut Butter Cup and she's walking around because she's gonna need it. But like you I still get asked you know, can you eat this Is this okay? And I always tell people like there's not too much I can eat I don't eat liver. They won't eat liver. So
Stacey Simms 19:28
not even with not even Chopped liver. No,
Kelly Kunik 19:32
no, I don't like it and you know, I know that I probably should like it because I run a little bit on the anemic side. I have my whole life but I can't stand liver. But yeah, I'm like the only thing I can't eat is liver. You know everything else is Game on. Oh, and like you said like diabetes or not divide the candy up and somehow it disappears the next few weeks because nobody functioning pancreas or not eating all of that candy. Just Can't nobody can adult child a child with diabetes, don't diabetes, anybody, people, it's just too much sugar. But, you know, I'm sure you talk to your neighbors and tell them something similar because I don't know, it's really great to have people thinking and looking out for your kids. But sometimes what they're trying to do like, for me, personally, I think there's a lot of damage with the sugar alcohol, like gastrointestinal is not damaged. But
Unknown Speaker 20:31
that's what I always trusting. So
Stacey Simms 20:34
I want to try to tell other parents Look, the way I handle it is just, you know, you don't say don't do this, you say, please do that, you know, you say, oh, wasn't Halloween fun? Hey, you know, we're trying something new this year, or maybe a couple of weeks before, you know, my doctor says, even if your doctor never says, you know, my doctor says that it'll be really fun and easier for Benny, if he just gets all the regular candy. And then we figure it out at home. Because right, sugar alcohols aren't good for him, or, you know, it's just better to have the real stuff. And but thanks so much. So just nothing special. And we'll see it in a couple of weeks of Halloween. And that way, nobody feels bad. You're not saying you know, hey, you bought us that candy, and we never ate it. And it made him poop for three days, you know, we're never not doing that.
Kelly Kunik 21:13
You know what it's expensive to that's the thing like here, people are really looking out for you. And right, and your child and spending more money than they should for very little bit of candy. Because, you know, a sugar free Chocolate bar or whatever. And it's expensive. So
Stacey Simms 21:34
I'm thinking here, we're talking about trick or treating, which I put all the costumes and everything. But it's been 40 years, if you don't mind me asking you to reflect on that a little bit. Something has diabetes never change. I imagine some things have changed quite a bit. You know, your bathroom probably doesn't look like a laboratory with those test tubes. Are you doing any reflection with the shear?
Kelly Kunik 21:54
You know, I am. So much has been going on in our world lately. Like I was gonna, I really wanted to do it up right for my 40th. And so much has happened over the summer and in the fall around our world with the elements and things like that last night I yesterday, I was working all day at a fundraiser for Puerto Rico, that I haven't really gotten it together to have this huge celebration I wanted to have. And five years ago when it was my 35th I was smack dab in the middle of Hurricane Sandy. Oh, right. Where I was where I lived was hit very hard from Sandy. So again, everything sort of went to the wayside. So I think I'm gonna do something for the year, as far as reflecting, because it's not just going to be about the day, a year of reflection, and bringing it into the 41st. year. I mean, quite, quite honestly, when I was little, I didn't necessarily think a person could live 40 years with diabetes, you know what I mean? Like, but I don't think as a child, you don't think that far? Know what I mean? You're just very immediate in the now for the most part, because that's what childhood is. It's the now. Yeah, I mean, I look back and I, I can't believe it. You know, I can't believe it's been four years, I can't believe all the changes, I can't believe I started with this journey with people who aren't here anymore. And my family, that makes me sad. But I try and live and be positive for them. So that's good. I mean, I just want it to be a good year. And I want it to be a great life. And, you know, we take the good and the bad, right? vinegar with the sweet. So there are days I get annoyed with it. Don't get me wrong, but I really try and focus on the positive because if I, if I let it bring me down every day, then what kind of life is that? You know, any mean? Any it's not going anywhere? So I like to say some days I'm in charge other days, diabetes in charge, like, some days we're both kind of like co executives of Kelly Punic Tony beam. Yeah, you know, there are days where I'm the CEO, and there are days when diabetes is nipping its heels and trying at my, you know, like, No, I want to be in charge. But I try and work with it as much as I can. You know what I mean? Because I don't want to hate it. There are moments when I dislike it intensely. But I don't want to hate myself. I can open up any magazine, and that tells me I'm not tall enough. Not skinny enough. Not busty enough. That's really easy. You know if he hated my diabetes, and I would be hating me, and I don't need that. I'm awesome.
Stacey Simms 24:53
You are awesome. But I have to ask you before we wrap up here, tell me about your blog, because I'm good. I always mess it up. Diabetesaliciousness. So where does that come from? And I love it.
Kelly Kunik 25:06
Okay, first of all, I'm such a dork. It was supposed to be called diet. I was supposed to be called diabetes-licious. Now when I started blogging, which will be 10 years in November, Oh, great. Go figure that one out. I had no idea what blogging was. Okay? None. It just looked like a Word file. And I could do a Word file. I couldn't create a website. That makes any sense. Oh, yeah. And blogger was essentially a fancy word file, right? He could upload pictures too. And there was always this thing I'd say, Oh, so diabetes-alicious. Like if I went surfing, and I got out of the water, and my blood sugar was like 125. So I can go to low diabetes-alicious. Or if I went out to dinner, and I had a big dessert, or maybe it was dinner in an Italian restaurant, which is always a bit of a challenge for me, pasta wise. And I checked my blood sugar a couple hours later, and it was like 170 like, Oh, that's fabulous. I nailed it. So it was always kind of a goal. Diabetes-alicious is always a goal to achieve was always just hitting the norm in my life, doing my normal everyday things, but celebrating it, you know, again, if I eat a pasta dinner, and two hours later, I was 175. That's pretty. That's like Nirvana. You know what I mean? Oh, yeah, totally Nirvana. It was diabetes. Delicious. And so I started to fill out the blog information that I wanted to do. And at the end, right before I hit Enter, I put the n e s s so made it diabetesaliciousness. I changed it. Because let's make it more difficult to say and pronounced. Why not? Again, I had no idea what I was doing. The only blog I'd ever read was Perez Hilton. And I didn't even know it was blog. I thought it was a gossip website.
Stacey Simms 27:02
And it's hard to imagine, right? But in 2007 we weren't even on Facebook. I mean, you know, it was so different.
Kelly Kunik 27:11
It was so different and I had now I can't change it. And I even change it on the business cards I had printed up I actually put Diabetes-alicious people are like what so if Diabetes-alicious never like diabetes, delicious. ness. Or you could just say Diabetes-alicious. I mean, I know it's a bitch to spell. It's my own fault. But it was 2007. I didn't know what I was doing. the interwebs was a new and exciting place. I didn't know there was a diabetes online community. Seriously. I had no clue.
Stacey Simms 27:46
Why did you start that? What made you jump in?
Kelly Kunik 27:49
You know, I had last a long term relationship. And I'd love to career. And I believe it or not, I wanted to sell insulin pumps, right? Because I really felt like my I had been pumping since 2002. I come from a family of sales reps, and performers, to basically like there's no doctors or lawyers in my family. We're all like salesman, performers, for teachers. And I was always the example that doctors would use, like, you got to meet this patient. She's doing really well. My doctors would have me talk to teens. And parents would stop me when they would see my insulin pump at the drugstore and haven't talked to her children. And I thought I really felt like insulin pumping changed my life. And I thought, well, I want to sell these things. And I sent my resumes out and nobody would talk to me. Nobody. And I had a marketing background and a writing background. I worked for several local newspapers and magazines, and I was a writer. And someone had mentioned blogging, or personal journaling. And I thought, oh, okay, hmm. And then of course, there was the whole like, a celebrity said they wean themselves off insulin and I got really mad at that particular celebrity. And I started this blog and then didn't know what I was doing. And I ended up calling this celebrities publicist in the LA in New York often, and I think I frightened the gatekeepers so much at both offices that the publicist ended up calling me back. And we played phone tag, and I ended up speaking with the publicist and saying, look, I think so and so was misdiagnosed. And this Oscar award winning person can be misdiagnosed how many other people can be misdiagnosed, and I really do think that's the case. But I was also upset because I knew of several young women with diabetes Lamia, whose parents had mentioned And this particular celebrity, as someone to aspire to. She has type one diabetes and look how great she's doing. And when I tell you I used to have parents come out of the woodwork and still do to talk with about their children to me. I mentioned that to the to that publicist, I said, Look, I don't know if you're aware of this thing called by Alenia. And it's very dangerous. And it's detrimental health, mostly it's women, young girls, and women with Type One Diabetes. But, you know, I know that young boys and men are awesome. And anybody can have it, you know what I mean? And so there has to be a better way to articulate that. And I really think if she came out with a statement, and again, I'm not blaming this particular celebrity, I think that's on the onus of the publicist. And she just wouldn't budge. And it got me so angry. And I think that was my first blog post. And I didn't know what I was doing. I just used it as a writing exercise every day on a subject that I knew intimately. And nobody read it. Except my friends. And I can tell you, the first person to leave a comment was Bernard, Errol. And that was like two and a half months after I started blogging, and I didn't know that this community existed. And when I found it was pretty life changing. So I'm very lucky. You know, but I had no idea what I was doing. I certainly wouldn't have made such a crazy name.
Unknown Speaker 31:40
Kelly Kunik 31:43
Like, I had no idea. I just knew it was this great outlet for me to get all my feelings out. And I didn't even realize how badly I needed that until I started doing it. Yeah, we should I learned so much.
Stacey Simms 31:59
Oh, of course. Yeah, let's circle back to Halloween. Because there's so much we can talk about in Kelly, I'll have to have you back on. But let's circle back to Halloween. Because, you know, we're talking about food and food issues, and everybody has food issues anyway. And then if you have diabetes, it's a more food issues on top of food issues. So if you're talking to people who want to trick or treat or parents of kids, and they're worried about this holiday, any any last advice here on just kind of keeping it fun. And making it as normal as it can be?
Kelly Kunik 32:30
for Halloween is a great holiday. It's really fun. It's an imaginative holiday roll with the imagination part of it. If you have more than one child, the rules apply for all you know what I mean? You can have a little candy while we're trickers reading, you can have a CHOPolate bar, whatever I know, a lot of you know, we have our check stations, right? Check our blood sugar's if you're on a deck, it's a little easier, right? On the Dexcom. So that makes it a little easier, and really enjoy the moment and don't dread it. And if you're going to dread it, don't dread it in front of your kid. Especially your kids with diabetes. Like Don't do that to them. Because they can't necessarily differentiate that you're dreading the diabetes aspect of it, and they're gonna internalize it and take it personally. Does that make sense? Oh, yeah. It's just like, it's like, children don't understand when you're upset at the number on the meter screen. They think you're upset at them. Okay, so what happens? You find ways to change the number. I did. And, you know, I went and check my blood sugar with one hand, the number would be lower. You know what I mean? Like their kids can't tell the difference. Whether they're 10 or five, they can't tell the difference. You're mad or you're upset. I should say you're upset at the number on the screen. They think you're upset at them. They are diabetes. I mean, I do. They're dying. Yeah. And I think it's, yeah, and it's, it's so important for parents to know, at least I think it is that you got to put your game face. You can say, I'm going to be up checking all night. This is crazy. Don't say it in front of your kid. Don't say it in front of your kids. Just do it. Just do it. Like, honestly, that's not fair. And I know, parents, they go through a lot with this disease. I saw what my parents went through and they didn't have the technology nor did they have this supportive community. I don't know how they survived. But you got to keep your game face on. You got to make it fun. You have to make it fun. And just do what you have to do and that your kids take part in it. Hey, look, could you do me a favor? Could you check your blood sugar? Like, let them participate? What's the carb on that? Do we know the carb? Here? It's on my phone, look up my list, like something like that. You know what I mean? where, you know, kids like to help? You know, they have to know this stuff, too.
Stacey Simms 35:16
Oh yeah, we're on. So what do you do for Halloween? Do you still get dressed up? Do you
Kelly Kunik 35:21
know? I did last year I wanted to Abby from NCIS was really fun. Great costume. I've done that a couple years ago, cuz it's just so much fun to wear. I don't know what I'm doing this year. And again, because I've been so focused on what's been going on in our world and healthcare and things like that. And hurricanes. I haven't had a chance to focus. You know, I'm hoping I can get together with friends, at least. And then we kick off into world diabetes day. And it's a really big whirlwind for me, I hope to do something fun this year. And I haven't been thinking about it. Because there's been so much leading up to this where I'm living like I said, it's the five year anniversary of Sandy's on the 26th I want to say, and they're still part of my town where like, people are trying to get back in their houses their homes. Yeah, so the past few years, it's been a little bit. My focus has been split. Which is good, because it's not all about me, even though it totally should be.
Stacey Simms 36:28
Well, well, let me make it about you. Because we're airing this show. As we're talking here, a little louder. This, but we're airing the show on your 14th die aversary. So from all of my listeners, to you, yeah, we're sending you a gift now we're congratulations. Thank you so much. Well, I'm gonna put this all over social media. And at least we can give you a big Halloween. Congratulations and way to go and everything else because it should not go unnoticed. I just think you're wonderful. Kelly, you do so much good for our community. Your is so much fun to talk to. I hope
Kelly Kunik 37:02
you have a great Halloween. I hope you did, too. And thank you so much. I will go have a glass of Prosecco for sure. And I will toast it your way. And I will tell you what in the DSC because honestly, I can say it's the best medicine and I am so grateful to be part of it. And you do such a phenomenal job. It's just so fun. And voc is amazing. And I really feel like sometimes when nobody else gets it, I just know that I can turn to my community. And you guys get it. And I don't even have to utter the D word. to just be like, Hey, guys, I need your vibes and I get it. So I appreciate it so much. And I love everyone and I love what you do. So keep up the great work. And hopefully we can all have a little celebration together soon. Thank you for doing this show though. I think it's gonna be wonderful and help a lot of people and as all your shows do, and Iraq.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 38:15
If you haven't read Kelly's blog, now you have to right go head over to Diabetes connections.com. I will link up diabetes maliciousness in the show notes. And I'm just so happy to bring Kelly and her story to a new audience a couple of years later. So we'll see what the reaction is to these classic episodes. I'd like to start releasing them doing things like this regularly in the new year. So let me know. Have you heard all 330 plus episodes of Diabetes Connections? Or have you joined us more recently, and you're looking to catch up by you know, having something like this come right to you. Because that's what's nice about these classic episodes, you don't have to search for them, they will come right to wherever you listen, whatever podcast app, they'll come up as new. And I think that'll really give some new life to these episodes that I love and are so dear to me. And our newer listeners haven't had a chance to hear. So I'd love to hear from you. Let me know what you think.
Our regular episode is coming up on Tuesday. We drop episodes generally once a week on Tuesday, with bonus episodes here and there. And I am talking to Leo brown from The Amazing Race. You may have spotted his Dexcom and the episode that aired that very first episode of The Amazing Race. There was a racer, he took a shirt off there was his Dexcom and the diabetes community lit up so I was able to get in touch with him. We had a great conversation, and that is coming up on Tuesday. Thank you to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here on Tuesday. Until then, be kind to yourself.
Unknown Speaker 39:56
Diabetes Connections is a production of Stacey Simms media. All rights reserved all Wrong avenged
Helene Cooper has type 1 diabetes, asthma, and she's Black. All of those factors increase her risks if she catches COVID 19. They're also exactly what the researchers behind one of the vaccine trials were looking for. She's now in that Phase 3 Trial and shares what it's been like.
Helene is also a reporter for the New York Times, covering the Pentagon and has an incredible story that began well before she was diagnosed with type 1 at the age of 15. She and her family fled here from Liberia in 1972.
In Tell Me Something Good, a few high profile birthdays and diaversaries
Plus, Innovations – see through is your organizational friend.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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Stacey Simms 0:00
Diabetes Connections is brought to you by 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 0:27
This week taking part in a COVID vaccine trial. Reporter Helene Cooper has type one and asthma and says she decided to apply after she met Dr. Anthony Fauci backstage at Meet the Press. She says at first, he wouldn't really answer her questions about her odds
Helene Cooper 0:44
And finally, he just he was standing by the door to go on air as we weren't in the same segment. He just stopped at the door. He was like, Look, I'm not saying that you're a dead duck, but she just really need to not get it. Oh, God, I really need to not get this.
Stacey Simms 1:00
Helene is now in a phase three vaccine trial. She's a New York Times Pentagon reporter and talks about what it's been like doing her job and living with T1D during this pandemic
in Tell me something good a couple of high profile birthdays and diversities plus innovations. Why see-through is your organizational friend.
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. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two. That was back in 2006. My husband lives with type two. I don't have diabetes, I have a background in broadcasting. And that's how you get the podcast.
There is so much in the news these days about the potential for a COVID vaccine. news about the trials political news about vaccines. This episode is a personal story about one woman's experience going through one of the vaccine trials. So I just want to let you know about that right up front. And a big thank you to Gillian McPhee, who in the Facebook group Diabetes Connections The Group shared the article that Helene Cooper wrote about her experience getting into the vaccine and a lot of what she shares here on the show, but I will link that up.
I reached out to Helene on Twitter, and she graciously responded. Now Helene has an incredible story, even before she signed up for this trial. I mean, well, before she was diagnosed with type one at the age of 15. She and her family fled here from Liberia. And I'm going to link up that story in the show notes at Diabetes connections.com. It'll be on the episode homepage. I'd really urge you to read that.
But one of the problems with the vaccine trials was all of the COVID vaccine trials is getting enough people into them. I'm also going to link up more information on that and I'm going to come back after the interview and talk a little bit more about it. I know you want to hear from Helene. And we'll get to that in just a moment.
But first diabetes Connections is brought to you by One Drop. It is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the sleekest looking and most modern beater My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data at any time. Instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo.
My guest this week is doing us all a huge service by participating in one of the trials for the COVID vaccine. As we recorded this interview, Helene Cooper had taken the first shot. She is due for the second in just a few days as this episode airs. Helene is a New York Times Pentagon reporter, but she says that's not why she was selected. She explains it is because she lives with type one, she has asthma, and she's black. There are not enough people from any of those groups represented in any of the vaccine trials. I tried to cover a lot with Helene and as this is an ongoing story. She was gracious enough to agree to come back on maybe a couple of weeks that she's further along and share more about her experience. So here is our talk.
Hello, and thank you so much for taking the time to talk to us about your experience. I really appreciate it.
Helene Cooper 4:35
I'm happy to be here, Stacey. I've never been asked to talk to diabetics before. So this is kind of cool.
Stacey Simms 4:40
Oh, nice. Well, I always like to tell guests like you that you don't explain the difference between type one and type two. We speak the language. We get it. I'm just so interested in so many of your experiences. But let's start with the COVID vaccine trial that I saw that article came to my attention. How did you get in the trial to be If you could kind of start from the beginning,
Helene Cooper 5:01
okay, I was watching Dr. Fauci on testify, I think it was before the House. It was either July 30, or the 31st. And he said that all of these vaccine trials were getting underway. And he said they needed volunteers. And he rattled off the name of a website that you could go to to volunteer. I don't know why I did it. But I just went on to the website, and I filled it out. I said, I was type one diabetic, I put that I have asthma I did. I filled everything out and went on about my business. And then a couple of weeks later, I was in the Outer Banks. So it was like, it was somewhere around August 28, the week of august 22 23rd 24, something like that. I got a phone call on my cell phone from GW from a clinical research associate, who said I had been picked for the Maderna trial.
And then I got nervous, because it's like, it's one thing when you fill out the questionnaire, and you think they're never going to call you and then they call, she said that I've been picked because I was type one diabetic, they needed to see if the vaccine was safe for people like me, I asked her a lot of questions. Because my first fear that a friend of mine had put in my head was what if they give you the vaccine, and then send you to like a high risk area and ask you to wander around without a mask or anything like that. And I thought, Well, I'm not doing that.
I've been super careful for the past six months, because I think we heard pretty early on, I still remember that sinking feeling in my stomach back in February, and March where they started talking about the high risk people and seeing diabetes. And it just said diabetes, it didn't say type one or type two, which drove me crazy, because it's like, these are two different diseases. And do they mean but whatever.
When I saw I had run into Dr. Fauci back in on March 8, when I was in the green room for a Meet the Press episode. And the first thing out of my mouth, I walk in, and he was sitting on the chair, and it's like, wow, look, it's like I recognized it from TV. And I was I immediately started talking to him about COVID, because that's what he was there to talk about. And I was like, Well, I'm type one diabetic and blah, blah. I was like, you know, what happens if I get it? And he was like, he kept. He wasn't beating around the bush. But he kept saying, you need to not get it. And I was like, Yeah, but what happens if I do get it? And he was like, No, you really need to not get it. And he wasn't he wasn't answering my question, but not answering my question. And I wanted to know like, okay, most people get it and there's a 98% chance they'll be fine. My like a 93% chance or what, exactly what, and finally, he just seems standing by them. He'd walked out the door to go on air, because we weren't in the same segment. He just stopped at the door. He was like, Look, I'm not saying that you're a dead duck, but she just really needs to not get it. Oh, God, I really need to not get this.
So I have covered the Ebola pandemic in Liberia. In 2014. I didn't Liberia for a month during Ebola I and at the time, I understood then that I really needed to not get Ebola as well being a type one diabetic. So I put into place my Ebola protocols. I think I called them on March 8, where I was washing my hands all the time, I was staying away from I stopped touching people. I was I've been and I've been really careful. I wear masks. I only just now recently stopped wearing gloves everywhere I went that I had been doing that for a while. And nobody's come into my house except my mom, my sister and my nephew. And brother in law. I'm like, so I'm probably much more careful than most people are. Because I think we kind of have to be because there's so much we don't know, I'm just rambling at this point, not letting you ask any questions?
Stacey Simms 8:41
No, it's wonderful. A lot to unpack there as Yes. So let me go back when you said there's not a lot of information about type one and type two, we you know, in the community, we're talking about that all the time.
Helene Cooper 8:52
Yeah. One of the things everybody I've asked about it has said they don't because I went to my normal diabetic doctor, and I was asking her about this. And she said the problem they don't know. All they know is that the people who showing up in the hospitals and needing to be put on ventilators and leading and having severe reactions and get you know, and you know, getting really sick and dying. A lot of them tend to be diabetics, but then I asked, you know, are they type one are they type two, and they're certainly type two, but she seemed to think that they're type ones as well. And that's what this is based on. This is at this point. There's so much about Coronavirus that we don't know COVID-19 that we don't know. And so the whole high risk category for diabetic that has been determined simply based on the fact that these are the people who are showing up in the hospitals.
Stacey Simms 9:46
So let's talk about the vaccine trial, get the call.
Helene Cooper 9:49
I get the call. I freak out. I call my friend first I called my normal doctor but she's very super cautious and her response was like Why does it have to You. So I was like, Okay, I'll Park this somewhere for a second. And I called my friend, Kendall Marcus, who's an infectious disease specialist. Her response was immediate, she was like, vaccines are super safe, you should do it. And for Kendall to be just complete, like, usually she's cautious, too. And she's like, you got to be careful. But it was just complete. No, you should do it. And so I got a, you know, we talked through it. And she, you know, explained some very complicated sounding stuff about how they work because I thought they were going to be putting a little bit of COVID in me, and but she said that the modern no one was not that is messenger RNA is basically tricking your body into making antibodies by feeding you a little bit of mRNA, that makes your body think that it has COVID. So she was like, there's no chance that you could catch it from this, when there's no chance that you could give it to anybody from this.
And so I went, I showed up for my appointment, it was on a Wednesday, they give you it's, you're there, I was there for three hours, they gave me a COVID test, the nasal swab, because if it comes back positive, you're not going to be in the truck, because there's no point of you being in the truck. They gave me a lot of time, they gave me a full physical, took blood made me take a pregnancy test. There's all this stuff. And towards the end, then, is when I got the shot where the doctor was like, Okay, you've been randomized, you know, the blind woman is like the double the unblinded person is coming. Because of course I hadn't read they told me all of that in a sheet that they sent me that read talking about that, which is my own fault. And then the nurse came in with the vaccine, and she was not even looking at me and as a reporter, I'm, like, filled with questions. It was like, Are you kidding me? Like, is that what is that? Is that the placebo? Is that the vaccine? Which one? Is it? Going through all of this? I want to make sure I you know, I'm getting the vaccine, I know placebo, and she was just like, you need to just, you know, she said nothing.
Stacey Simms 12:00
Well, yeah, if anybody else knows besides that person, then it can be, it can ruin the whole study!
Helene Cooper 12:07
I got so much s--t from people when I put that in the article that I was harassing the woman about this dude, like you're violating the sanctity of the study. But it's just like, you kind of want to know if you got the placebo vaccine. When you posted your story in my facebook group for the podcasts. People were very well they Yeah, not pleased. No.
Stacey Simms 12:30
But I can tell your personality, right? Yes,
Unknown Speaker 12:33
you can laugh. No worries.
Stacey Simms 12:36
One of the questions that actually came up in the Facebook group was whether you were the only person with diabetes in the trial. Now obviously, you don't know anybody else.
Helene Cooper 12:42
But it was. I am not because ever since I wrote that story I've gotten a lot of people have tweeted me, including type one diabetics were in the trial who have been and there's this one guy who's been so great, because he's like, let me tell you what happened to me I'm in the same type of trial. It's like his was with Pfizer. I think mine is butchering it, but it's the same technology. And he was like, the first shot felt totally normal, just like you and then the second shot, my sugar level shot up, I was sick for 36 hours and then it went away. And he was like, but it was just as if I had you know, how you get when you're diabetic with a flu, your sugar level goes high and all that kind of stuff. I was like, that means you got the vaccine. And he was like, well, be careful. You know, because just the cuz you sound like you don't think you're You got it, but I didn't I didn't think I got it when I got the first shot. And the second shot was like, Huh, so now I'm worried about the second shot.
Stacey Simms 13:32
Well, I was gonna ask you, did you have any kind of reaction blood sugar wise to the first one? Nope, nothing. I mean,
Helene Cooper 13:37
just some aches and pains. Um, some muscle joint, which I don't, I think was because I was camping on the beach. And I got like the the I got the stuffing pounded out of me by these ferocious waves was
Stacey Simms 13:51
curious if you asked your friend who said what if they give you the vaccine, and then they want you to test it by wandering around a hotspot? I can't imagine that's actually part of any clinical trial.
Helene Cooper 14:02
I would think wouldn't you do that in phase one? It's not part of phase three. But what's the What is it? Wouldn't phase one be remember? Did you see Contagion?
Stacey Simms 14:14
Right. But she did that on her own?
Helene Cooper 14:16
Yeah, but they got it tested some kind of way. How are they going to find out if it works if they don't see if it works? If they don't expose people to it? Yeah, shape or form. I mean, he was getting at. I got a lot of grief for that for putting that in the story. But I thought that was a very legitimate question to ask. And as a non medical person, that's what you're gonna wonder.
Stacey Simms 14:42
Okay, I'm gonna jump in here for just a couple of minutes. If you are wondering about that point yourself or maybe you are screaming at the two of us in frustration. Here's the real deal about how they do vaccine trials. Once participants get a vaccine will the researchers intentionally expose them, right? That's what we're talking about here. Will the researcher send a lien into a crowd of people as in the movie Contagion? Which, if you haven't seen it, it's a 2011 movie. It's all about if you haven't guessed, it's all about a pandemic. There were scientists who worked on that movie and made it very realistic and therefore quite terrifying. But to the question of did they send people who got the vaccine out into infected crowds? No, of course not. That is unethical.
I did a little bit of looking into this. And so here's what most of the publications say, because there are still no effective therapies to prevent someone exposed to COVID-19. from falling seriously ill intentionally exposing patients is a no go. Instead, the idea is to observe the number and severity of naturally occurring infections. Among the many thousands of volunteer participants who receive vaccines, or placebos. If there are notably fewer infections, or milder infections among the vaccinated group, that's how they tell the vaccine is working.
So I want you to take a moment and clarify that and we will go right back to my talk with Helene in just a moment. But first, diabetes Connections is brought to you by Real Good Foods. We've been enjoying Real Good Foods for almost two years now. And I got to tell you, I think with all of their new products, everything's great. But the pizza that we started with is really still our favorite. And we got an air fryer A while back. And that has really taken stuff like this to the next level. Although my I shouldn't say that because my husband still prefers to heat up the pizza, in a frying pan, or saucepan, kill, just heat it up that way. I don't know, maybe he doesn't wanna get the air fryer out. But to me, it's crisp beer, it tastes better, one less pan to wash at the end of the day, you can find out more about where to buy Real Good Foods. Our whole line is available in Walmart and local grocery stores. You can also find everything online, go to Diabetes connections.com and click on the Real Good Foods logo.
Now back to my conversation with Helene, where we are finishing up talking about that movie Contagion. And obviously, that movie was worked on by experts.
Stacey Simms 17:14
We've all heard all those stories but I haven’t watched it
since COVID. Started, I can't bring myself out
Helene Cooper 17:16
a good No, you gotta go do it. I did it. And I like it'll, it'll, it'll make you even more careful.
I watched it in March. I was like, Oh, hell no. Stay. Oh,
Stacey Simms 17:30
I will. Alright, I'll have to go back and look at that, then what happens? Is it a second shot? And then you're done? Or do you? I mean, they'll follow you. But are you done? Not
Helene Cooper 17:38
that they follow you up? Um, there's an app that you have to answer. The first week, the app was making me answer questions every night, take my temperature and all of that. And then it's gotten bored with me, and it stopped now. So I haven't gotten any good. So then you have the second shot. And they follow up with you. They're supposed to call you every week. And you answer questions on the app, and they just track you. And so presumably, it's a two year study. But they're shooting for, you know, a few months. Yeah, very quick.
Stacey Simms 18:11
And because they're they wanted to look at people specifically with diabetes. Are they also asking you to track blood sugars and things like that? Or they're just looking for safety?
Helene Cooper 18:19
or remotely related to but which I find curious, because that's like, they have not the questions or fever, body aches, pains and all of that they didn't that none of the questions are because the questions are all for the 30,000 people. So they're no special. I'm not in a special diabetic subgroup. But
Stacey Simms 18:37
it's interesting, because you are in three subgroups, diabetes, asthma, and being a black person. Yeah. So as you said, they were looking for people, you know, do you know if they were successful trying and this is gonna sound? I mean, I asked this question they were looking for
Helene Cooper 18:53
they I don't know the answer. They at GW moderna paused its trial to expand it because at first they weren't getting enough black people. So they went and cast the net, even wider. And I think they believe they've now got a representative sampling. The people at GW said that they felt that the sampling that they were doing reflected the city of Washington DC, which means then that they had a high black population.
Stacey Simms 19:18
So listen, you have a job that I assume you cannot do, only from home. No, I can't Pentagon is your beat.
Helene Cooper 19:25
I'm home a lot. And the Times went to, you know, to send us home back in March, march 13. And they're really good about that. And I do a lot of my job right now I do at home, but it's so different. It's harder, and I do have to go to the Pentagon and I do meet sources. And so I wear the tie I was issued and 95 masks by the times and you know, full, you know, kit, full kit and 95 mask. And when I go to work, like during the protest, for instance, I did some a little bit of that went to the Pentagon when I go to meet for sources and all of that Especially when you're at the Pentagon where you have to wear a mask in the building. A lot of people don't wear masks inside their individual offices. I've been in to meet with top generals at the Pentagon who have you in the office, but they're not going to wear a mask, they will take your temperature, but I don't think I think that's pointless. Yeah, test your temperature. But once you're inside, and then they'll always say, Oh, don't you can take off your mask if you want, but I never do. And I, that's when I wear that. And 95 because that will protect me, not just because you wear a mask to protect other people primarily, but the N 95 will protect you.
Even before COVID I'm curious, you know, a high powered career very busy, but also very much in when you work at the Pentagon, you're not fooling around, I'm curious if you would share a little bit about how you manage type one. Sure, your job, you have a son who's type one, so you know that it becomes like brushing your teeth, it's just something you do. I'm testing myself, you know, eight to nine times a day, I'm taking multiple shots a day. And that's just something and I've gotten really used to, I test in front of anybody, I don't wait, I don't like you know, I don't go, my sister laughs at me because I take my shots through my clothing, because sometimes you can't, you know, the needle, go through your clothing. And if you're on an aircraft carrier in the middle of something, you don't have time to go find a bathroom to you know, whatever.
And it's a long time ago, one of a doctor, Dr. Joshua barzilay, in Atlanta, when I was I just moved down there in my 20s. And he said, you know, you have a choice, you can make the diabetes conform to your life, or you can make your life conform to your diabetes, and I made a choice, I was going to make the diabetes conform to my life. So I've done everything I was embedded in with the third infantry division for the Iraq war I was I've been, you know, with all special ops groups, you know, behind enemy lines, I do all of that kind of stuff. And I just I keep a tight rein on my sugar levels. But there plenty of times where I have problems, you know, I've had insulin reactions, thousands of insulin reactions there. Because if you keep in control, you're very close to low, right? You know, if you're keeping between 80 and 120. It's, I've never gotten to the point where I have figured out how to keep between 80 and 120 and not have 60s, you know, you're running around at 300 400, then yeah, you're not gonna have insulin reactions. But if you're keeping in control, then you're gonna hit lows. And so I hit I hit lows, lucky in that I still feel them. I can tell when it's coming on. I carry sugar pills around with me everywhere. They're sugar pills. In every pocketbook. I have their sugar pills in my fanny pack their sugar pills everywhere. And that's sort of how I deal with it. And so I feel fine. I've had it for what I'm 54 years old now. And I got it when I was 15. So that's a long time. I haven't had any of the my kidneys are fine. My You know, my eyesight. I can't see for s--t. But that's not because I mean,
Stacey Simms 23:11
we're all wearing glasses.
Helene Cooper 23:12
Yeah. And everything so far, knock on wood looks okay. But it's something that you just you just deal with you. I mean, which you know, I assume because you've got a son who's just dealing with it.
Stacey Simms 23:23
Do you use any tech? Or have you seen either technology insulin pump CGM, stuff like that, not your style.
Helene Cooper 23:28
I don't like the pump. I tried the pump. And I didn't like it. I tried the continuous blood monitor. And I didn't like it. So I still I use pens. I have a mantra for my long acting, and I'm on human log for my short acting. And then I have the one touch you know, and I it's five seconds. And it's really easy. My doctor is so pissed at me because she's been after me for two and I won't do it. And every year she's like, Look, it would be so I tried to Dexcom and I hated it. It's waking up in the middle of the night and striving you not. And so I stopped after one month. And so she's I mean, I'm probably gonna fold at some point, but I haven't pulled it yet.
Stacey Simms 24:06
Well, I wouldn't call it folding if you want to try it jump into the group or I know you know what you're doing. But there's some advice on how
Helene Cooper 24:12
to not make it drive you up a frickin wall. Because it? I mean, yes. Oh, I would like probably that advice, because I think at some point, I'm gonna have to just do it. Well, that's another story.
Stacey Simms 24:22
Yeah. Tell me about your diagnosis story. You were diagnosed at 15.
Helene Cooper 24:26
Yeah, I my dad was diabetic. And for some reason, I think he was type one. I don't remember his type one or type two. Because he died in 1985. And I think he was type two, but he was taking insulin regularly and fairly aggressively, which makes me think maybe he was type one and we just didn't, I don't know.
Stacey Simms 24:46
So yeah, it's at that time, too. They didn't know about Lada and all the other things.
Helene Cooper 24:50
He was diagnosed when he was like 40. So that's, I think that's why they But anyway, so that's a whole nother set. Let's not get in. Let's get into what I know. Anyway, My mom, as it turns out, now it's type two. I'm from Liberia, West Africa. And my family had moved here in 1980. I was living with my dad, my parents had split up. My mom was back in Liberia for a year and we're living my sister and I were living with our dad in North Carolina and Greensboro. And I started running to the bathroom and being thirsty all the time. I was like, 15. Then I was a junior in high school, and I started dropping weight. I was skinny. But then I got really skinny. But I thought I was but I was eating. I was so hungry all the time. And I was convinced I had blown up because I was eating like seven meals a day, and horribly hungry. And in the middle of night, I was going downstairs and drinking apple juice and eating food. And I was like, I have to be so fat. Why am I eating like this? And my mom showed up to visit us and she came to the house Liberia and she my dad came to the school to surprise me because we didn't know my mom was coming. And they came to the school to surprise me. And they got me out of my class. And I go running. I was like, why are you living with me? And he's not noticing because you're seeing the person every day
to the doctor, and I was diagnosed and I was ended up in the hospital for a week in pediatrics.
At 15 I was very outraged that they put me Yeah, true. Yeah,
Stacey Simms 26:27
I bet but they're also at 15. You have no sense of your body, right? Your thumb. Oh, yeah, I'm eating
Helene Cooper 26:33
That's amazing. Yeah, I was so convinced that I was a pig. I was like that it was like all whatever. But anyways, so that's when, and so I remember they put me on this is so far long ago is like the 80s. They put me on these three different types of insulin to start x rapid, semi tard, some other top monitored, and I was having instant reactions and then shooting up and they were trying to I would take one shot in the morning. And that was it. And I couldn't get it under control. I was I was hungry all the time. Because they had they started me on too much insulin. And so I was hungry and eating. And it was just really it was bad. And I was only testing that's back when you would test with urine. Yeah, this is all before, this is a long time ago. And so I took my insulin, but that was all I would do. I would take my insulin in the morning, but then I ate whatever I want it. And so I was completely out of control. And it took years for me to get my act together. I mean, I went through college, you know, I feel like on a wing and a prayer, I took my insulin. So I never got went to the point where I didn't take my insulin, but there was a lot of but I was eating whatever I literally whatever I want it. And it wasn't like it was that much. But it was like you need to be 10. And I wasn't testing I would go like here and test myself. And then when I got out of college, I started a job in Providence, Rhode Island. And I was working out a lot then. So things my sugar level was probably much better in was lower, but I was having insulin reactions all the time. And then when I moved to Atlanta, and I met this doctor barzilay. And that's when he told me you can do this, or you can do that. And what he did for me that was the most important thing was if you are comfortable with taking multiple injections a day, and with testing yourself all the time, you can do what you want. And that was the that was the breakthrough for me.
Stacey Simms 28:30
Right? Well, somebody gives you a plan of action, rather than saying, here's the older insulins that really don't work to your life. Here's a man. No, you followed that.
Helene Cooper 28:39
Yeah, better. No, it was great. Because once it's like, once I realized it was like if I know a knowledge is power, he if you're willing to take the shot, it's nothing I don't, it doesn't bother me. And testing my blood sugar doesn't bother me. And if he sees like, if you're willing to do that you can do you can live the way you want to live. So it's great.
Stacey Simms 28:59
Before I let you go, I'd love to talk a little bit more about the clinical trial. Okay. very beginning of it. Are you so far happy that you did it?
Helene Cooper 29:07
Yeah, I'm happy I did it. I want to be part of you know, I want to be part of the solution. No, I've none of us want to keep this going for it's like, we're all shut in and we want it over to right. And it's at some point with the you know, we're gonna have to take a vaccine anyway. So yeah, I'm glad I did it. Whether it's a placebo or a vaccine, I'd be if I dropped dead from it. I won't be glad but that I'm gonna be glad I did it. Right.
Stacey Simms 29:33
Well, there was a lot of skepticism. Yeah, people of all political persuasions, yes. races of all disease states. I mean, let's be clear, not singling anybody out here.
Helene Cooper 29:43
Any message for people listening who may have an opportunity like that to take part in a clinical trial and are hesitant follow the iron. You know, that's I'm I'm a big believer in science. So that's, I'm divorcing myself from the politics. I you know, the whole vaccine by election. De that's not even going to happen. That's irrelevant, you know, even if they have somebody, at most be an announcement, but that's not going to mean anything. And that's meaningless, you know. And so just stick to the just follow science. If we follow science, we'd be better off on COVID to begin with, and science is certainly what's keeping me alive. So,
Stacey Simms 30:19
next step for you is the second part of the vaccine. And then maybe we can follow up with you in a couple of months if that's okay. Happy to wonderful
Helene Cooper 30:28
and I'll be complaining that death they definitely gave me the placebo.
Stacey Simms 30:32
And I can give you my review of contagion.
Helene Cooper 30:34
My re review. Okay, you if you watch contagion, I will come on your show again. Alright, we'll do I've
Stacey Simms 30:39
seen it, but it's been a very long time. So we watch it. Oh, you
Unknown Speaker 30:43
won't sleep that night.
Stacey Simms 30:44
I don't sleep now. Helene, thank you so much for joining me. It was a real pleasure and so interesting, I appreciate it.
Helene Cooper 30:51
It was fun talking to you, Stacey.
Unknown Speaker 30:57
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 31:03
More information about the Vaccine trials and about Helene story at Diabetes connections.com. Just click on this episode, click on the homepage for it. There is a transcript we do that for every episode starting this year, really excited about that people seem to really like it. And I started that in January of 2020. And I'll continue to do that.
I'm also going to link up one of the many articles about the difficulty that scientists have had and researchers have had in recruiting black volunteers and other people of color to take part in these trials. And something to keep in mind is that the National Institutes of Health has suggested minorities be overrepresented in the testing at rates that are doubled for their percentage of the US population. So there's a lot more information on this as to why and how historically black medical institutions are getting involved. I thought that was very important.
You know, of course, we're looking at this through the lens of type 1 diabetes. But this is something that as you listen, I think it's important to be aware of as well. And boy, do I appreciate her coming on and sharing her story. the good, the bad, the ugly, she got a lot of pushback, as you heard for that article. And I will follow up in a couple of weeks. And I'm assuming she will have the same amount of candor. Next time we talk.
Tell me something good in just a moment. But first diabetes Connections is brought to you by Dexcom. And you know, we started using control IQ that is the Dexcom G6 Tandem pump software program back in late January of this year, and we're doing less work for better results. I'll say that again. less work better results with diabetes. And I say we but it really is all Benny at this point. I mean, he's 15. And you know, you think about when we first got the CGM just to show up on the pump. What was that 2017. And that was a cool feature, but it didn't do anything right. But that secret sauce in the control IQ that keeps Benny in range so much more. It really lightens the burden. I think that's the best way to describe it is a one C has come down it was already really good. We're just thrilled. Of course individual results may vary. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
In Tell me something good this week. We have some fun things to share diversities and birthdays. A very, very happy birthday to the Dooley family and I'm going to wish a happy birthday to the whole family because parents Christina and Greg celebrating with their triplets, Mia, Isa and Max. And I cannot believe that these kids are 10 years old. You may know the Dooley’s better. As the Inspired by Isabella family. Isabella was diagnosed with type one as a toddler. And she and her family have just been a huge part of the diabetes online community of friends for life. So many things. And boy, these kids are just knocking it out of the park, each with their own personality and strengths of course and different hobbies. But they all really seem to come together to support Isa. Christina is one of these very creative moms. She does all the stuff that I never did or dreamed of doing. You know very crafty, very, very fun with costumes, lots of lawn stuff going on since they've been stuck at home I mean this 10th birthday. I'll see if she'll put a picture too in the Facebook group but you know number 10s all over their lawn and big cutouts for the kids hobbies. So a big Happy Birthday to the Dooley triplets to Mia Isa and Max.
A big congratulations and a big diversity to Dennis Goldensohn. Dennis is a longtime listener and I first talked to him he's been on the show. I talked to him about reaching the age of 65 when Medicare kicks in, and we talked when he had just finished his first year on Medicare so I will link that up but I mentioning him now because he is celebrating 50 Two years of type 1 diabetes. And he posted in the Facebook group he has that Lilly medal that they give for, you know, for big milestones.
And he wrote, Hey, everybody, thanks because he was getting a lot of really nice comments about it. The objective here is not to brag about an award, but to say yes, it is possible to live with T1D and live a productive and long life. Now that is worth bragging about and what is really possible lead by example, Dennis is also very active in JDRF. I was gonna say his local chapter, but I think we're all one chapter now in North Carolina. So he's in the Raleigh area, I'm in the Charlotte area, but he's also active as a mentor. And I really appreciate it. So congratulations, Dennis. Here's to many more healthy years. And thanks for sharing that with us.
My episode last week with Jeannie Martin, who was diagnosed in the 1950s and has lived with type one for 66 years got a lot of attention. And it was it was just very well received. I mean, why not? She's fantastic. And I heard from other people who have lived with type one for a long time, who shared their stories. And Ron Doyle is one of those. He was diagnosed at age four in 1959. I am living life well. I'm a full time employee at age 65. I'm going to retire in my 70s. My Doc's told my parents, I would likely be dead before age six, but it's been a great life. And he writes, I still have all my toes at other important extremities. And Ron also shared I showed him an email back and said, Hey, thanks so much. Can I share this? And he replied, absolutely. Most people do all the good news they can get. He works full time as an IT guy, and he has a monthly radio show on tech. I'm going to link this up because his podcast, he says is tech for us gray hairs like me, I like to stay busy, Ron writes, and I will link up gray haired tech because I don't have any gray hair yet, Ron, but I probably could benefit from your podcast. And I'll put that in the show notes as well.
If you have a good news story, a diversity of birthday something cool, you've done a big milestone you know, a marathon or you've you've got up Mount Everest, whatever you want to share with the community. Just reach out and let me know you can always find to be Stacey at Diabetes connections.com. Or you can post in the Facebook group every once in a while I will ask for more good news stories. I love hearing from you. Thank you so much.
My new segment innovation is all about tips and tricks, listener suggestions to make life a little bit easier with diabetes. And sometimes the innovations are big clinical trials approvals, that sort of thing. This week, I want to talk a little bit about organization with a great bit of advice I got from Susan Wiener. She is very well known in the diabetes community. She was the 2015 Diabetes Educator of the Year she's a registered dietician nutritionist, a certified diabetes educator, she's, she's the best I love Susan, I'm lucky enough to call her a friend. One of the things that she told me and she has a great book too. It's called the complete diabetes organizer. And well, that book has so much advice in it, we're just gonna focus on one little thing here.
And that is being able to see what you've got in terms of diabetes supplies. So if that means you're taking the stuff out of the box doesn't mean we know we get pump supplies or Dexcom supplies or even insulin, it's in a box that you cannot see through. So her advice is to put it in a clear plastic box so you can see from the outside. Or if you really can't tell at least Mark what it is on the outside, you know, tape a piece of paper and use a sharpie and write on it or use a clear plastic shoe bag, you can put individual supplies there. I've seen people put snacks in it so the kids can get what they want, you know carb counted, snacks are separated, you know, however you want to do in your household, but everybody can see. And the one thing I would add to that is whatever you do if you're taking your diabetes supplies out of boxes, and I do this because I also use
Gosh, speaking of organized, here's a little plug I use the T1Dgear, folks, there's a really wonderful small homegrown business, and they do 3d printing. And I'll link that up in the show notes as well but I use their stuff a lot. But you have to take everything out of the box, you've got to keep the labels if you need the lot number if you have an issue if you need the serial number of your Dexcom you know all this stuff. So if you don't have room to keep the actual boxes, and you're not a big like Ripper offer, a lot of people hate to keep those little strands of paper, you know, like I'll just shoot I'll rip off the front where it has all of the information or cut it out neatly. I don't cut anything neatly, I clawed off like an animal. But you could also take a photo, take a picture with your phone have the lot number and all of the information.
And that way you'll know what goes with what and that way if you have to call in a Dexcom replacement or you have a box of pump in sets that are not working correctly. You'll have the information in front of you and you can call it in it's all well and good to get organized. But if you can't see when you're running out of something, and then I know the people with little kids don't get it yet, but when your teenager uses the left decks calm and doesn't tell you and leaves The box in the storage area, right or uses the last pump inset, and just hasn't said anything. I didn't realize it was the last one. That's where the yoga and meditation comes in. So you can use these tips maybe to avoid those kinds of situations. And thanks again to Susan Wiener. I'll link up that episode to Gosh, I think it's about two years, maybe longer. Now, since we've talked, it was a great episode about getting diabetes organized. I love her.
Thank you so much for listening to this episode of Diabetes Connections. We have a lot of great stuff coming up. In fact, I have so much, I might have just more bonus episodes. I don't know I'm sifting through personal stories and sports stories and technology stuff. It seems like towards the end of the year, you know, we take a breath in August and the beginning of September, and then it's just a race to December. And that's how it's going this year. So I'll keep you posted. But please join the Facebook group. That's where I put most of my questions for you and pulling in that sort of stuff. Thank you to my editor John Bukenas from audio editing solutions. Thank you so much as you listen, 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 rounds avenged
Jeanne Martin was diagnosed with type 1 diabetes at age ten, in the 1950s. Technology was very different back then, of course, but so was the medical community's reaction. Jeanne was told she would never have children and if she did, she wouldn't live to see her children grow up. Today, Jeanne not only has a daughter, she's also a grandmother. She shares what she’s learned along the way. We also talk to Jeanne's daughter Jessica, who talks about growing up with a parent who has type 1.
In Innovations, find out why when it comes to keeping track of long and short acting insulin, a CDE says invest in rubber bands.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Other episodes with amazing people living long and happy lives with T1D:
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 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 0:30
This week, Jeanne Martin was diagnosed with type one at age 10. Back in 1955. She's had to fight a lot of doctors along the way, including one who told her she would not live to see her child grow up.
Jeanne Martin 0:45
And my reaction was I told my husband that guy can go walk up the street and get hit by a bus tomorrow. I'm not going to go along with that. That's was my reaction. I got mad. I didn't buy into it. I didn't get depressed because I Just thought he was full of baloney.
Stacey Simms 1:00
Jeanne was right. She's now a grandmother. And she shares what she's learned along the way that made her question and stand up to doctors like that. We're also joined by her daughter, Jessica, who shares with like growing up with a parent who has type one
in innovations this week why a diabetes educator says invest in rubber bands. 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 am so glad to have you here I am your host, Stacey Simms, and we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two that was back in 2006. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get this show. I spent 20 plus years and local television and radio news.
I've been doing this show for more than five years now and I don't remember Ever putting the topic of the show to a vote, but I did that for this week, I put up a poll in our Facebook group, it's Diabetes Connections, the group, I have a couple of interviews. I'm usually a few weeks ahead with interviews in the can. And I asked the group to vote on which interview they wanted to hear next, and everybody chose Jeanne, I cannot say blame you. I am always amazed at the strength of these people, the stories of people who are living well with diabetes for 50 60 70 years. I mean, you think about it, before blood glucose meters were a thing. I mean, they weren't available to the 1980s. And this was a time that we're talking about with Jeanne before some doctors would even know about different types of diabetes. I was shocked to learn that that for a very long time, it was just diabetes and you treated it with a one shot a day, or then they would say juvenile diabetes. And you couldn't possibly have that if you were an adult and you're just on and on.
And if you're new to the show, I've done several interviews with people who were diagnosed in the 50s in the 40s. And they've lived with type one for 70 years. And I will link those up with this episode. You can also search with a very good search engine at Diabetes connections.com. We're up to more than 320 episodes. So if you want to Google keywords like living long or 60 years with diabetes, that sort of thing. You can find that on the website.
Before I get to the interview. I want to read something that was sent to me it's actually a review on Apple podcasts. I'm really bad at asking for reviews and keeping up with reviews. If you want to leave one up man, I would love it. Whatever podcast app you listen on, there is a way to leave a rating or review. This one came in from Shelley. Now her name is not on this but I know who this is because we featured her. We featured her son in a recent show. So Shelley wrote I love this podcast so much. I learned so much from listening especially enjoyed the tech episodes with Dexcom and Tandem etc. As the mom of a newly diagnosed four year old. I have found much needed encouragement and tips for helping and thrive with diabetes. Also, cannon was excited to hear you mention him swimming in the lake. Surely thank you for writing that. Yeah, we talked about cannon she had sent a picture into the Facebook group about him burning off the glucose. She said swimming in the lake pan swimming is one of those ways where Benny used to just those little kids just swim with every part of their body. They used to go low all the time in the pool. It's a little bit different. Now you know, a 15 year old does not swim like a four year old. But surely thanks for sending that review in. It's always nice to get reviews like that. And if you like the show, truly the best thing to do is to tell somebody about it tell somebody in the diabetes community. That's the best way to get the word out.
All right, Jeanne and her story in just a moment but first diabetes Connections is brought to you by One Drop, getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized tester plans plus you get a Bluetooth a glucose meter test strips lancets and your certified diabetes coach, subscribe today to get the 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 lives 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.
I feel like I've known Jeanne Martin for as long as my son's had diabetes. That's almost 14 years. And that's because while I have never met Jeanne in person, I have been friends with her daughter Jessica Graham for even longer than those 14 years. We met when Jessica was in public relations here in Charlotte, and I was working as a health reporter for a local TV station. And later we were on the board of our local JDRF chapter together. I cannot believe it has taken me this long to share Jeannes story. She is just incredible. I was able to talk to Jeanne and Jessica, about living well with type one for 66 years. Jeanne and Jessica, thank you so much for joining me. I've known Jessica for so long, but I don't know so much of this story. I'm so excited to talk to you both. Thanks for coming on.
Jeanne & Jessica 6:17
Thank you for having us. You're very welcome.
Stacey Simms 6:20
Jeanne, I got to start with you. Because you have lived with type 1 diabetes now for more than 65 years. Let me just start out by saying How are you? How are you doing?
Jeanne Martin 6:30
I'm doing great. I think I'm doing just fine.
Stacey Simms 6:35
What do you mind if I ask what technology you use how you manage anything you'd like to share?
Jeanne Martin 6:40
Well, I checked my blood sugar with little contrast test strips. And I shoot nice. Well, I take shots
Stacey Simms 6:49
you can say brands, we’re all friends here.
Jeanne Martin 6:51
Yeah, I say I shoot myself
four times a day. I see my doctor every six months. Well, that's about it.
Jessica Graham 7:01
She does not use a pump or
Stacey Simms 7:04
any of that. No, if you don't mind, let's go back. Do you remember what it was like when you were diagnosed? You were 10 years old. Do you remember anything about that time?
Jeanne Martin 7:13
Oh, yes, I do very much. We lived in a very small town, not far from the Mayo Clinic. We just lived there a couple years. My friend's mother mentioned to my mother that I was drinking a lot of water and going in the bathroom a lot and she thought maybe my mother should have me checked out. So we did in the small town with the with the doctor there said, Well, she's either got diabetes or TB. Well, I didn't know what diabetes was. And I knew what TB was. So I thought, Oh, please don't i don't want TB. I'll have the other and so so the little basically country doctor didn't know what to do. So anyway, so they sent me to St. Mary's, which is public Have the Mayo Clinic. And they tested me and for sure that's what I had. So I had to stay there. I think it was five years. I didn't do all this stuff with the diets. And they wouldn't let me leave until I could get myself a shot. But I was active. And I don't really remember too much about it. The doctor were very nice, and everybody was very helpful. And back then you had glass syringes and needles and you couldn't check your blood sugar. You had to pee on the stick, and they sent me home and my mother had to weigh everything, and I had to watch what I ate. But other than that, that's about it. Then I just basically went on with my life. Did you
Stacey Simms 8:46
really? Were you able to jump back in go to school, do all the things you wanted to do with that time?
Jeanne Martin 8:51
Yeah, I did.
Stacey Simms 8:52
Mm hmm. It seems like such a different time, right. I'm just trying to think,
Jeanne Martin 8:55
Oh, yeah, it was a very different time and when I first got married, Remember, I had to boil my syringe once a week, we had to do that. And I was still peeing on a stick. And I only had one shot a day back then all through, you know, school. And of course, I didn't want to tell my friends when I was in high school. That's what I had. But of course, my mother told my best friend's mother. So everybody knew it, but I didn't know they knew it. Oh, wow.
Stacey Simms 9:25
Anyway, moms are sneaky that way. But yeah. The you know, the regimen was so different. You had one shot a day, right? And then you had to kind of eat around that shot. Did you have problems as a teenager? Did you do remember, you know, any issues or were you able to buy I would assume by routine and by figuring out what to eat, you know, how did it work out for you?
Jeanne Martin 9:47
Well, I didn't run into any problems when I was a teenager. And I do remember I don't know how I would go not very often, my friends and I and I would have hot fudge sundaes. Believe it But other than being bad like that, I lived at home and my mother, kind of watch what I ate. And I didn't need a lot of sweets. You know, it was my mother's management, not mine. And I came home for lunch all during school. And I didn't start taking more shots until about, oh, I don't know, maybe 45 40 years ago.
Stacey Simms 10:23
Yeah. It's so different to think about because we're talking about I mean, if doing my math correctly, you were diagnosed right? In the early 50s 1950s.
Jeanne Martin 10:30
Right? And 1955
Stacey Simms 10:33
Yes, so the routine was completely different. I mean, as you're listening, you got to understand not only one shot a day, but no blood sugar home meters, right. You're still checking. How often did you check done by check? We mean, pee on the stick.
Jeanne Martin 10:50
I probably did it maybe once a day. I honestly don't remember that. Not a lot. It's very different now. And somehow, I think my pancreas has always worked a little bit because I don't take much insulin. And I'm very, I don't want to say touchy with it, but I don't have to take a lot. And when I was diagnosed at the Mayo Clinic, they said that yes, my pancreas was working a little bit. That's what they thought. And I still think that's the case because I just don't need much insulin. And and I watch what I eat. I do, but you know, I'm not 100% I mean, I do have cookies,
Stacey Simms 11:30
but you're told us you were eating hot fudge sundae. So the cat is out of the bag…
Jeanne Martin 11:35
That was in my youth. You know, I do take care of myself. Now. I check myself four times a day, shoot up four times a day and I watch myself better now because I know better. I'm more wiser.
Stacey Simms 11:48
I'm curious to growing up. Did you know anybody with Type One Diabetes and if not, when did you meet somebody with no,
Jeanne Martin 11:55
I never knew anybody. I didn't know anybody with any kind of diabetes. It wasn't in my family, so none of my relatives had it. No, during high school I did not know, as an adult. I have met very few type one diabetics, I know they're out there, but very few. And it's kind of fun when I do just to kind of say, Well, you know, compare notes, so to speak. Sure.
Stacey Simms 12:21
Just let me ask you a couple of questions. Because the perspective of a kid, you know, we're all adults now. But a child growing up with type one in the house and the type one is in the parent is not something that I've talked a lot about on the podcast. What's your earliest memory of your mom and diabetes?
Jessica Graham 12:38
Well, I don't ever remember it not being there. And that was more because I worried about her than it was her. There was never literally and I'm, I mean, this literally, there was never a day when my mom said, Oh, I don't feel well or Oh me, you know. My sugar is off, or I just don't feel good today, never. And so it was nothing that she did. I just knew that if mom started acting funny, I needed to get the orange juice. So I remember that I never had a problem with shots. And I think that's because I always saw you give yourself a shot. So it was just, it was always there. The other thing that I remember is that I was always told that it skipped generations. And so I do remember I don't even know if you remember this. But I remember at one point when I was little, I told mom that I didn't want to have kids until there was a cure, because I didn't want my kid to have type one. And I she got really mad. My mom never got mad. But she got upset at that and told me that was absolutely you know, the wrong attitude to have and that she had a great life and it didn't have any impact. And so that was the end of that but it was just always there. So just always a part of life. Jeanne, I'd love to hear your perspective. On when Jessica who now has a I want to say a tween a teenage Yeah, yeah. just turned 13 Yeah. Wow.
Stacey Simms 14:07
I want to hear your reaction Jeanne to when she said that!
Right back to Jeanne answering that question but first Diabetes Connections is brought to you by Real Good Foods. True story from my house. Benny came downstairs the other night, open the freezer door, looked in it close the door and said who ate the mint chocolate chip ice cream. And I had to say it was the I finished it off. Sorry, Benny. But they're Real Good Foods. Ice cream is really good. We had a vanilla chocolate and mint chip this last time I promised him I would buy more and I have to get the peanut butter kind as well. We haven't found the ice cream yet in our grocery store freezer so I get that online but our grocery store carries a lot of the meals and they are so good and super easy and basically just heat them up. If you have an air fryer. It's even better They have everything from pizza to breakfast sandwiches to bowls, these new bowl meals that are really nice entrees. Find out more, check out that mint chocolate chip ice cream for yourself. It stays frozen. They they package it up the right way. I was worried about that, but no need to worry should have known. Just go to Diabetes connections.com and click on the Real Good Foods logo.
Now back to Jeanne answering my question about her reaction. When Jessica told her she was really concerned about having children.
Jeanne Martin 15:33
Well, I didn't want her to dwell on it. And I didn't want her not to have kids. You know, it's so much more advanced nowadays. And there's so much more that they can do. And I always do hope for here. I mean, I've been hanging on that for a long time, but you never know, one of these days. No matter what your problem is. You just have to get along and do the best you can and get along with your life and not dwell on it. And I've never dwelled on it.
Stacey Simms 16:02
Well, I'm curious too, because now we know and I've heard that too. it skips generations. We know it absolutely does not. But I'm curious Jeanne, you know, when you decided that you wanted to have children? Did anybody try to talk you out of it? This was a very different time for diabetes.
Jeanne Martin 16:14
Well, I was told that I would have a hard time having a child. And so we put up for adoption. And we were waiting to hear and I went to the doctor and thought I had a tumor but the tumor was Jessica. So I thought, okay, so we said, you know, we were going to have a baby so we don't need to adopt and they said, Well, why don't you wait to see if everything is okay. And I said, okay, because the doctors told me that Jessica only had a 40% chance of being born alive. So we waited and she was screaming and kickin, so she was Fine. So we stopped the adoption because we didn't need two babies at one time. And I didn't see her for I think it was like two or three days. She was in an incubator because her blood sugar was low when she was born, but then after that, she was fine. And I was fine. And that's it.
Stacey Simms 17:19
I'm sorry. I'm still on the tumor.
Jessica Graham 17:24
Well, and I'll add to that, because, you know, she won't tell you this part, but because she was diabetic, she couldn't have any medicine or or painkillers. When I was born, and you were in labor, what, 24 hours? No, no,
Jeanne Martin 17:39
it was, I don't remember 13 hours. So it was a
Jessica Graham 17:42
ridiculously long and I was stuck behind a piece of cartilage. And so I wasn't coming out. So she went through hell delivering me. But it all worked out. Yeah.
Stacey Simms 17:54
Oh, worked out. things really have changed. I mean,
Jeanne Martin 17:58
Oh, yes. And I also was I would not live to see my child grow up. Now I've got a 13 year old grandson.
Stacey Simms 18:07
But let's talk about that, because I've heard that from so many people diagnosed not only in the 50s, but even as late as like the 70s and 80s. This Doomsday of you're not going to live past 30. And I know that for many people, that unfortunately was the case, there was not the care. There was not, you know, whatever they needed, but it seemed as though in some ways, the doctors, I don't know, I don't want to editorialize here, but they seem to have this Doomsday approach. And when you were told that Jeanne, what was your reaction? I mean, I think a lot of people would have said, well, what's the point? Oh,
Jeanne Martin 18:37
I'm kind of stubborn.
And my reaction was, I told my husband, that guy can go walk out in the street and get hit by a bus tomorrow, and I just, I'm not going to go along with that. That's was my reaction. I got mad and he did die. A younger The age that I am now is a matter of fact, the guy that told me that I didn't buy into it. I didn't get depressed because I just thought it was full of baloney. I love it.
Stacey Simms 19:10
All right, this is getting interesting now. I do love it. Jessica. I know your mom is sitting right there. But you're doing great Jeanne, obviously with with your shots and with your checking, but the technology has advanced. I'm going to assume, Jessica, that you guys have had a lot of discussions about this. And your mom has said no. And you're respecting that don't put words in your mouth. But I'm curious how have those conversations happened?
Jessica Graham 19:36
Oh, yes. And I don't mind saying it with her sitting right here. So I don't mind that she doesn't do the pump because I understand. I mean, she's had incredible control for 60 some years and so i don't i don't blame her that but I want her to have a blood sugar monitor because she tends to go away Low, and she goes low at night. And it's been a problem as I call it a problem. Whenever she goes low it to me it's a problem. And so while she keeps great control, and I mean, it's her life, right, and it's her decision to make, I wish that she would get some of that electronic help with the monitoring of it. So yeah, we have that conversation a lot. But I lose.
Stacey Simms 20:26
That's a difficult situation. You know, we, as parents of children with type one have these conversations, especially once there were certain age, and I'm going to say, as young as four or five years old, where it really has to be up to the person to buy into it and say, Yes, I want this technology. And I would imagine and I'm just imagining having this conversation with my mother, who I think you have a lot in common with with Jeanne. And I think it would go that well. Yeah, well stubborn, but also you're doing very well.
Jessica Graham 20:52
Yeah, and Exactly. That's why I mean at the end of the day, what am I going to do right now I can only put in my two cents but that that is is the one thing that I wish you would do. And my dad to his credit. I mean, he's kind of grown up with this too, right? And so he's a great monitor strangely, he knows when it's the middle of the night and she's having a hard time. But I don't like to rely on that.
Unknown Speaker 21:17
But again, I lose
Jeanne Martin 21:19
stubborn. Well, let me cut in here. But the doctor prescribed a new kind of insulin that I've been taking. I don't know six months now and I have not had any trouble at night. Oh, good.
Stacey Simms 21:32
We don't have to use it in the show. Are you taking Tresiba?
Jeanne Martin 21:34
It's Tresiba. Yeah. And I have not had any trouble at night. Since I've been on that. Yeah, that's a good thing.
Stacey Simms 21:41
But my son uses an insulin pump. But long story short, we had him on Tresiba with the pump for a while because teenagers use the most ungodly amount of insulin that you could imagine. He's coming out of it. So we did away with the trusty bow, but boy, it's like the best long acting we've ever used. I'm curious too, and the bridge kind of skipping around chronologically. Hear but I mentioned earlier that there were not blood sugar meters for home use when you were diagnosed. Do you remember when you started using one of those maybe the 80s
Jeanne Martin 22:09
Well, I thought it was great because then I really knew what was going on. I mean it just it was very helpful because and that's why I checked myself a lot because you can't guess how much it's I mean, you can guess kind of how much insulin but you really can't without knowing what your blood sugar is to my mind. I mean, I think that's what's helped me keep control in Yeah, I don't like to stick my fingers but I mean, I'm so used to it now just comes second hand to me, so it made a big difference. What really made a big difference to is having plastic syringes that don't have to boil. Tell me
Stacey Simms 22:49
more about that. When did that switch? Not Not Not necessarily like what year but tell me more about that. What do you remember kind of the transition? Did you just one day throw all the glass ones out? What happened? Right
Jeanne Martin 23:00
Yeah, I did. I guess the doctor told me that these were available. And so I bought them and and use them. And then you know, he used it, throw it out. And it just, it made a big difference. It's just like, oh, gosh, you know, this is getting easier. Well, and you know, it was a lot easier. I mean, it sounds like a small thing, but it was a no to boil, you know, syringes once a week and needles once a week. And so this was great.
Jessica Graham 23:28
When did you I don't remember you ever boiling? Was that in the 60s or
Jeanne Martin 23:32
70s? No. Well, I must know. I don't think when you were born. Other times, I must have used the plastic ones. Yeah. Because I don't remember doing that either. When you were born.
Stacey Simms 23:43
You know, Jeanne, it's interesting. You said it seems like a little thing. I think for someone who has my perspective. My son was diagnosed in 2006. When we basically have I think we have all of the technology. At least it was on the drawing board if not available at the time. It wasn't as good as it is now. Just 1314 years later, but it was there. And so to think about transitioning from peeing on a stick to a blood sugar, meter glass syringes, to plastic syringes, these are monumental changes. I don't think it was a little thing. I can't imagine how much of a difference that made. I mean, the needles had to even feel different. They were more comfortable, I assume.
Jeanne Martin 24:20
Oh, well, it was it was like one size needle with the glass syringes, and they weren't that small. And now, you know, you can get all different kinds of sizes. Jessica, do you remember growing up?
Stacey Simms 24:32
It sounds like your mom's diabetes was not front and center, as I'm sure she would not have wanted it. But are there any things that stand out? You know, when you were a teenager? I'm trying to think his parents are just super embarrassing to begin with?
Jessica Graham 24:44
Honestly, no, because it just my mom wouldn't let it be the center. I mean, you're absolutely right about that. She she would never have wanted that. And I don't remember there being anything that happened when I was a teenager. That was odd. She She had one episode. I guess I was a teenager when you broke your ankle. She was we discovered that she couldn't drink champagne. She had a glass of champagne. I mean, literally a glass and the next morning passed out and broke her ankle because it messed up her blood sugar so badly that I don't remember anything ever. Embarrassing or weird or no, not not at all again, I I remember when I was a younger teenager, like if you started acting strangely, I needed to get you orange juice like I vaguely remember that but and that went for anybody. Like I think if anybody started acting strangely, I would have ended them. Shoes. But
Stacey Simms 25:43
Jeanne Martin 25:49
You know, I work during high school, I worked at clothing stores and I worked at a bakery. And then after school, I worked at a real The state office. And I guess that was it because it was the board of realtors, because I had to quit them when I got pregnant with Jessica. So that was it. And then when my husband started his company, I worked for him. I did the payroll and things like that.
Stacey Simms 26:19
Jessica, what led you to JDRF? I mean, we had met Previous to that, but we connected again at the Charlotte chapter.
Jessica Graham 26:25
I led community outreach for Harris Teeter, but didn't formally get involved. They were supportive of JDRF, but didn't formally get involved in a board capacity until I got to Time Warner Cable, and they were also involved with JDRF. And so I joined the board at that point, and was on the board for, I don't know, six or seven years, I think, and shared it in there. But I think I knew about JDRF through mom, like I think you just always supported them. Yeah, um, if I'm not mistaken, the world. organization was born the year I was born. Just another thing that has always been a part of my life. And I was really excited to get involved with the chapter because yeah, as you sort of already mentioned, the parents of type one diabetics are really involved. But there really aren't many children of type ones out there. There weren't at the time. It meant a lot to me to be involved and to be part of it.
Stacey Simms 27:24
I'm just curious, your mom, Jeanne, you just seem so laid back. And I've talked to several people who have lived with diabetes for this long who are I want to say relax, because obviously you're not, but who are more of the, hey, I'm taking care of it. We don't need to talk about it. You know, I'm not surrounded by people with type one. And then there are people who are younger, or we've been diagnosed more recently, who are really a big, big, big part of that community and want and need to kind of breathe that air. And I was curious, Jessica, was it surprising for you to kind of be involved in JDRF and be around people who were more like well, I am talking about every day and I am going to tell you more about it.
Jessica Graham 27:58
Yeah, I mean, it was it was definitely Different, because that's just not how it was in my house. I mean, it wasn't a big secret or anything. But Mom definitely didn't advertise it. And it certainly wasn't part of her identity. It was very, very different. And I really loved to one be involved that I really loved getting my mom in that community, like I would take her to the gala and that kind of thing. And she really is such an inspiration to a lot of people, especially those who are newly diagnosed because they can see somebody who really, I mean, has had a full, long, wonderful life with it. And so it's not this Doomsday message. And so she's really, I think, a real inspiration for that. And I think too, she's a great inspiration for how important attitude is an outlook is because she's never let it define her and she's never really Let it limit her. And I think she's really inspirational. So yes, it was very different to be around different people with it. But also it was really exciting to just to be able to share her with that community.
Stacey Simms 29:12
Jeanne, what's your reaction to have your daughter sitting next to you and saying, what an inspiration she thinks you are?
Jeanne Martin 29:17
Well, I think that's very nice. It's very complimentary. I never thought of myself that way. But I'm glad she sees me that way.
Stacey Simms 29:26
I know my listeners are going to want to know, a few more little details. Jeanne, do you exercise a lot? Have you always been active? Are you more kind of laid back about that too? You know, that's one of the things that people always ask me about.
Jeanne Martin 29:37
No, I say I'm pretty active. Well, since we've lived here almost the whole time. I would go to the why three days a week. I don't do that now because I suppose and when I was younger, I played golf, and did a little bit of tennis. I've always gardened Well, not always but for a long time I went out in the They are dug in the dirt and that type of thing. And I try to walk about a mile a day. I mean, I walk more, but I go for a mile walk, or more. I tried to do it every day, unless it rains. I do it early when it's hot, because the heat affects my blood sugar. I run into trouble easier. And I don't know if that's the same with other people. But anyway, that's what it is. Yeah, I think I'm pretty active.
Stacey Simms 30:27
Yeah, you're very active. Jessica, I'm curious, have you. You mentioned that you were worried about your son having type one and he's 13. Now, do you still think about that? It's in the back of your mind. Is it something that you've ever had checked out? Anything like that?
Jessica Graham 30:41
Um, yes. So I worry about it every day. But I don't
I try not to think about it. And I certainly have never mentioned it and
Unknown Speaker 30:49
Jessica Graham 30:50
it chat once and I forget why you've charged it. Yeah, maybe. Maybe you were the one anyway. I feel like I had it checked once and I don't remember why maybe he was thirsty that day. But I do worry about it a lot. And I mean, literally every time he says I'm thirsty, because I'm just a little neurotic that way, but I don't talk about it at all. Like he would have no
Unknown Speaker 31:14
idea. I don't
Jessica Graham 31:16
think anybody would know that. But yeah, I worry about it a lot. But then again, I think, well, if he ever were to develop it, oh, my gosh, he has the world's greatest teacher to help him navigate it. So that puts my mind at ease. When he was very, very small. I found a test that he could have done. It might have even been when he was born. I mean, it was he was really, really young. And I think it was down in Florida, talking about TrialNet Yes, that must be what it was. And we just decided
Stacey Simms 31:49
not to do that. And I think I talked to you about it and talked to my mom about it. And she, I think suggested that we not do it and I decided not to so Well, Jeanne, let me then ask you about that because you would, as Jessica said, you know, he would have such a great role model and teacher, God forbid something would happen like that. So let me just ask you, what would your advice be for a newly diagnosed adult or a newly diagnosed family facing something like this now in in 20?
Jeanne Martin 32:19
Well, it depends the age of the kid. I think when you're a teenager, I think it is be harder on the kid because, you know, you don't want to be and maybe it's because I'm a girl and maybe it's back then you don't want to be different. I mean, you know, you want to blend in as a teenager, you don't really have enough self confidence to just say, Okay, I've got this and I'm gonna deal with it. I mean, I'm not saying that kids don't but I would think that's a harder age. But I guess I would just be very positive and all the things that can help. At the same time, it was would be your his responsibility to see He does try to do what he should do with diet and exercise and taking this medicine. I have a niece who came down with it when she was 10. And she never did well with it. She didn't do what she was supposed to do. And over the years, she's had all kinds of complications. And she just got very depressed with it. And you have to be positive. But you the kid himself, has to take responsibility for himself to do what he should do. And I strongly believe in that.
Stacey Simms 33:36
Thank you both so much for joining me today. It was amazing to learn about your story, Jeanne, and I'm so glad, Jessica that we were able to do this. Thank you for being on the podcast.
Jeanne Martin 33:45
Thank you for having us. Yes, thank you. It was nice meeting you via the computer.
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 34:01
I shared some photos in the Facebook group that Jeanne and Jessica sent me, I was so happy to finally get a chance to talk to her. And you know what, after that interview, she sent me an email with some advice for Benny, which I thought was really, really nice. Now he is, as you've heard him here on the show, he maybe he's a little too confident, but he's very independent and very confident. But Jeanne has some really nice words just about you know, not letting diabetes stop you and keeping a good attitude that has served her well. And I really appreciate that she took the time to do that this community is just great.
All right, innovations is up next. And we have a very low tech solution to a very scary problem. It has to do with rubber bands. All right. I'll explain that in just a moment. Diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before share. So trust me when I say using share and follow apps make a big difference. I made a lot of people who don't realize that when Dexcom launched you could not see numbers not only on your phone, but you could not share than with anybody else. But now it's such a great system. And Benny and I set parameters about when I'm going to text him or you know how long to wait all that it helps us talk and worry about diabetes less when he is at asleep over or goes on a trip. It gives me peace of mind. It also helps if I need to troubleshoot with him, because I can see what's happening over the last 24 hours and not just one moment. The alerts and alarms that we set help us from keeping the highs from getting too high and help us jump on lows before they're a big issue. Internet connectivity is required to access separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
As you know I am the queen of diabetes mistakes I wrote a whole book about why I think mistakes are great. It's the world's worst diabetes mom real life stories of raising a child with type one. But I will say that making mistakes is also incredibly scary at times. And the one mistake that I think almost everybody with time wonder who's a caregiver for someone with type one has made is mixing up the long acting and the short acting when you're on MDI, whether it's the beginning or you've been doing this for a while, I've been enough Facebook groups where I see this happening. It's once in a blue moon for the individual. But it seems like almost every week somebody is coming in and saying, Oh, my gosh, I did this. I'm so scared. What do I do? Right? Well, one of the best tips I ever heard on is so simple. And I heard it from a CDE.
And I'm so embarrassed that I don't know their name. And I'm so sorry, if this was you, email me Stacey at Diabetes connections.com. And I will give you credit, but what you do is this, whenever you have a new vial or a new pen, have long acting and do this on the long acting only take a rubber band and wrap it around the pen or the vial. Just wrap it around a couple times. You know, make sure it's not loose, it's not sliding around. And then every time you pick up your long acting, you will know that it feels different. It's got those rubber band bumps on it and If you do this often enough, really doesn't take that long, maybe two weeks, your fingers will start to associate that feel with the long acting. So if you make a mistake if you accidentally grab the wrong pen, your hand and your brain will instinctively know that something is wrong. Now, this is not proven. I haven't seen any studies on it. But this is advice that was given to me that I've heard other people use. And it really does make sense.
It is incredible that after all this time was different kinds of insulin, that the pens are pretty much exactly the same. The Lantus vial, I remember might be a little skinnier, right? It looks a little bit different. But when you're moving quickly and automated, like a lot of us are, I mean, I could do that Tandem cartridge in my sleep, whereas when we first got it, I thought, oh my god, this is so complicated. I've got to lay everything out on the table. We did the Animas pump for 10 years, I could definitely feel that thing blindfolded. You just get used to your routine and how things are Feel so if you just wrap the rubber band around the long acting, you will get used to the feel of it.
Let me know what you think. Does that make sense to you? Has anybody tried that? And if you've got an innovation like that This segment is for everything big and small. That makes living with type one just a little bit easier. Let me know I would love to hear from you.
Just a little personal update before I let you go, this has to do with insurance. We've had some employment situation changes around my house, which means I have already spent far too much time on the phone. I decided to start taking advice from one of our previous guests from Melissa Lee, who said when you have insurance issues, you should start with the diabetes companies and work backward. So I called Dexcom and Tandem and I said hello, I have changed insurance. What do I need to do? And they were very helpful. The bad news is my new insurance means we have to order from a third party supplier and it's Edgepark. Edgepark. If you're listening, please, please handle this.
Well, we were with Edgepark years ago and I hate to disparage anybody. But let's just say let's turn this into a positive. I felt that it was such a gift for the last five and a half years to order directly from Tandem and directly from Dexcom. I am sad to see those days in my rear view mirror. So I will keep you posted on how it goes. I'm currently as I'm recording in the limbo of an Edgepark representative, we'll get back to you. We have plenty of supplies. I have a great support system if I need anything, so I'm not worried about Benny. But man, although I'm a liar, because I did say to him, you know, before you rip anything off your body, so bad before you take off that sensor or that inset, come talk to me, and make sure that it's okay to do so. Isn't that terrible? I mean, I'm laughing because we really are fine. But it just makes me crazy how expensive this stuff is, and how difficult the process is to order what you need. So I will keep you posted on that. Hopefully, it'll all go smoothly. But this is not my first rodeo. So I'm anticipating navigating a not so smooth road. I'll let you know.
Thank you so much to my editor, John Bukenas from audio editing solutions. Thank you all so much as you listen, I'm Stacey Simms. I'll see you back here. Next Until then be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All Wrongs avenged
It's our annual game show episode! This year, because of all the Zoom calls, we decided to play the HollyWood Squares! Of course, since this is a show for the Friends for Life Conference (FFL, pronounced Fiffle) we're calling it The FFL-Wood Squares!
Huge thanks to our panelists:
Kerri Sparling, Edward Hawthorne, Dr. Henry Rodriguez, Chris "The Grumpy Pumper," Moira McCarthy, Renza Scibilia, Oren Liebermann & Cherise Shockley. Learn more about them in the FFL Conference Program
Get the App and listen to Diabetes Connections wherever you go!
Transcription In The Works
Meet two people with diabetes making a difference in very different ways. We're talking to dietitian and strength coach Ben Tzeell & teen author Morgan Panzirer. First, if you've sort of fallen off the nutrition and exercise wagon in the last few months, you’re not alone. But getting back in the game doesn’t mean going to extremes. Ben has advice about starting small and making changes that stick. Morgan was diagnosed with T1D at age 6. She's now 19 and just wrote a book about her life – so far – with diabetes. It's called Actually I Can.
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, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.
This week, I talked to two people with type one making a difference in very different ways. First, if you've sort of fallen off the nutrition exercise wagon in the last few months, you're not alone. But getting back in the game doesn't mean going to extremes.
Ben Tzeel 0:37
Life is too short to not enjoy food like that. And the last thing you want is you're constantly eating air quotes healthy, and now you're feeling deprived when you see all your friends eating these other things.
Stacey Simms 0:47
That's dietician and strength coach Ben Tzeel. He's got more advice about starting small and making changes that stick in Tell me something good. I'm talking to Morgan Panzirer diagnosed at age six. She's now 19 and just wrote a book about her life so far with diabetes.
Morgan Panzirer 1:05
And I vividly remember being in the car driving to New York City The following day, and saying to my parents, everything will be fine as long as I don't need a shot.
Stacey Simms 1:15
The book is called, actually I can, and after talking to Morgan, I can tell you better believe she can.
Welcome to another week of Diabetes Connections. I am so glad to have you along. Welcome if you're brand new, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed right before he turned two. He is now 15 and a half. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting. And that is how you get the podcast.
I have been so busy the last week mostly because for whatever reason, sometimes podcast interviews seem to come in clumps. So I had a lot of interviews to do and a lot of production I take care of a lot of it before I send it over to my editor who I've mentioned before, but also I've been busy with my Friends for Life presentation, Friends for Life is the biggest family conference all about diabetes in the US, possibly the world. And instead of having an in person conference this year, like everybody else, they're having a virtual conference. And so I decided, and boy, I thought this was a good idea that I would do my usual game show I usually do a game show presentation as one of my talks for them. But I would do Hollywood Squares because boy zoom just lends itself to Hollywood Squares, doesn't it? That's what I at least what I think of and I gotta tell you, I'm thrilled with how it came out. But I also got to tell you, I'm not sure I'll ever do it again.
We had to get eight people I was the ninth you need like a tic tac toe board right for for the Hollywood Squares. The FFL-Wood squares excuse me, that's Friends for Life, FFL. So FFL-Wood squares and I decided to go big and I got people from all over the world, different time zones. Day here night here. Early morning here, it was amazing. So huge credit to my cast of characters. Thank you to the contestants. I cannot wait to share it with you. The conference itself is mid month. If you've signed up for that you'll see it then. And then we'll drop it as a video in a podcast episode. Shortly after that. That's one of the really fun things that I get to do, right. I mean, you have an idea you get to try it. You see if it's a disaster, you see if it's fun, but you know, it's it's never boring, that's for sure.
Okay, interviews coming up in just a moment with Ben Tzeel and Morgan Panzirer, 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 in access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more.
Unusual show this week and that I have two guests two separate interviews. And if you're here only for one or the other, that is fine. I can tell you that Morgan's interview starts about 22 minutes from now, so you won't hurt my feelings if you skip ahead. But I really think you'll like my first guest, Ben Tzeel. we first talked to him last year. He's a dietician, he's a strength coach. And Ben says eating and living with diabetes should not be boring or feel like punishment. We had a fun conversation about what that really means good intentions about eating well, and exercising and quarantine and more. Here's my talk with Ben Tzeel.
Hey, Ben, it's good to talk to you again. Thanks for coming on.
Ben Tzeel 4:53
I'm just so thankful to be here. And it's so awesome. It's just amazing. Thank you.
Stacey Simms 4:58
You're really well. We'll see about But
Ben Tzeel 5:02
it's human. It's human interaction right now we don't have much of that these days do it.
Stacey Simms 5:06
Well, let's start talking about that. I mean, how have you been living since the stay at home orders? What's your life been like?
Ben Tzeel 5:13
I just don't go anywhere. I've been living in Florida, not nothing against Florida, but I feel like the cases go down and then the cases go up. And that's just what you hear about everywhere. And I just figure it's just not something I'd rather really want to deal with if that makes any sense. Do you live alone? I actually live with my girlfriend and fortunately for me, she's willing to do a lot of the grocery shopping and a lot of the day to day stuff at the pharmacy but honestly, we just don't go anywhere because she works in the ICU as a pharmacist and she sees all this stuff firsthand. Wow.
Stacey Simms 5:44
That's gonna be interesting job to have right now.
Unknown Speaker 5:47
Stacey Simms 5:49
Assuming that you've been doing this since mid March, yo, how's your health? How are you keeping up because you're pretty intense person when it comes to fitness?
Ben Tzeel 5:58
Yeah, I definitely like to thanks. So it's something where I've had to get creative. I've had to step outside of my comfort zone and really look at what I have and say, Okay, what can I do with what I currently have? And slowly, you can assemble a little mini gym at home and things like that. But I've really, really taken time and effort to focus on what can I do instead of, well, this is out of my control, I guess my fitness is gonna go away. I guess all of my other habits that I've worked so hard to develop are gonna just fall by the wayside?
Stacey Simms 6:26
Well, I think for some of us, those things, the second part, those things have happened, right? Because it is hard to maintain a routine It is hard to, you know, especially when, and I'm gonna get personal here for people like me, you know, you're a strength and conditioning coach, you know, this is what you do. I'm a suburban mom who walks her dog and goes to the gym a couple of days a week. And it's been really easy for me to fall out of those good habits over the last couple of months. You know, do you have any advice? If people are listening and thinking, Well, I haven't kept up so it's too late now.
Ben Tzeel 6:56
Well, it's first one of those things is to your point where you mentioned It's too late. Now, it's never too late to actually start and say, I'm gonna look back and say, This is what I did before, this is what I was doing. And maybe I won't be at that same point right now, because I have let myself fall off because I have fallen out of this routine. But what is something I can do today that small to just build a little bit of momentum. And as you build that you take another baby step, another baby step, and suddenly, you're taking strides to get back to where you were. So if you start from that mindset, and that point, just make that tiny little shift, you end up in a situation where suddenly three, four weeks from now, you're thinking, wow, I'm already almost back to where I was. Because your muscle does have a memory, it is going to remember where you were. And as long as you put in those same habits you previously had, you should be totally fine.
Stacey Simms 7:45
It's funny when you talk about, you know, getting back into routine because I think at the beginning of this, I don't know if this happened to you, me and my daughter, and I think a lot of people and my daughter came home from college, and we said All right, we're going to do yoga on YouTube. We're going to walk the dog like five miles every day, and we're gonna get really, you know, in great shape, we have a stationary bike, and we're going to do all these bikes and all these rides and, and we really haven't done much of it at all after those first couple of weeks, and I've seen some really funny parody videos on that and a lot of people who have felt this way, but I want to flip that around and say you have taken as you said, You've gotten creative in your house, can you tell us a little bit of some of the things you've done to make your your home gym, I'm assuming that you didn't run out and buy a whole bunch of, you know, gym radio equipment?
Ben Tzeel 8:29
No, I was fortunate that I my parents don't live too far away. And I had a bunch of dumbbells and a bunch of things from my youth that I was able to pick up. But beyond that, I mean, I was pretty much in the same situation that everybody else was where I had a few resistance bands and a few dumbbells and a few little things and had to start realizing. All right, well, I want to keep my insulin sensitivity good. I want to stay on this track of that I've been working so hard to be on what can I do. And so maybe that requires you sitting down and saying Alright, I'm going to restructure my workouts, I'm going to tell myself maybe I was doing four days a week before an upper body and lower body, you can still do that. But you may have to adapt. Instead of using a cable, you may have to use a band instead of using like a barbell or instead of using a heavier weight, you might have to go more reps at a lighter weight, or incorporate pauses or incorporate other bodyweight movements that can be just as challenging. And honestly, the first few weeks of the quarantine, stay at home, whatever you want to call it. I actually felt like I was more sore than when I was in the gym because I had to push harder.
Stacey Simms 9:34
You've mentioned your blood sugar several times you've lived with type one you were diagnosed when you were a kid. I've heard two schools of thought here over the last couple of months. One is you know, my blood sugar's are all over the place. I'm stressed out I'm so worried and you know, things are crazy. And then the other side of the coin is my blood sugar's have never been steadier. You know, I'm not going anywhere. I'm not eating restaurant food, where do you fall in on that?
Ben Tzeel 9:56
I would probably fall. That's it. I mean, I'll Honestly, it's a good question because I see it a lot from the first perspective. So I feel like I then kind of translate that to me. But it's actually my numbers have been in better control since this all began. Because there haven't been as many extraneous factors. I'm not going places. There's lots of unknown variables introduced. But I just I feel for a lot of the people that are in the first situation because there is that lack of routine and that lack of structure. And while everybody says, Oh, I, I wish I could be home more, I wish I didn't go to my job. Taking that structure out of the picture can really make it difficult to stick to that exercise program really stick to the food and the nutrition that's been making you feel good with good blood sugars, and you ultimately fall off that path. And when you do your blood sugar's kind of take over everything else. And during a time where there are no sports, there's not lots of distractions, there's no big gatherings, there's no concerts, your blood sugar's can literally become the one thing that you hone in on and focus on way too hard.
Stacey Simms 10:55
That's funny because I thought you were gonna say there at the end that you can really you can focus on And really make a great difference. But you said you focus on and you know, it can it can not be a great thing. Can you expand on that last thought?
Ben Tzeel 11:08
Sure. And I mean, of course, I can tell you it, there's ways to get around it. But a lot of people what will happen is, I mean, think about it like because there aren't tons of social things to be doing. And there's not tons of activities and tons of distractions, you start to look at the few distractions you have in your life. And one of them would be, I wouldn't call diabetes, a distraction, but it's one of the big prominent parts of your life if you have it. And it just starts to become a bigger and bigger and bigger thing that you just the more you focus on it, the more it expands and the bigger role it can take in your life. So I've watched a lot of people people I've worked with people I've interacted with on social media, that they end up in a situation where their blood sugar's just take over their entire existence where they're looking at their decks calm every five minutes, wondering what's going to happen and sometimes that leads to great results, but other times, it just drives people crazy. He drives up their stress level and they get into this loop of frustration. Oh, my blood sugar's high. Oh, I'm a failure and they go down the spiral that is very counterproductive in terms of living like a really as free of a life as possible to do right now.
Stacey Simms 12:14
Yeah, I would also echo that for parents as you were listening. I think it's super easy. And I found myself doing this too, with Benny home a lot more. It's easy to focus on our kids blood sugar's more, right? They're not going anywhere. They're not go to the movies, they're not hanging out with friends. And it's easier to make that a bigger focus than it needs to be. So I'm kind of listening to this and taking it to heart. But you know, one of the things you're really known for in social media is these these crazy foods, right? We talked about this last time when you were on, you know, giant donut, big meals and stuff. And I'm curious if there's, you know, we often figure especially newly diagnosed, we often find out that we love restaurant food because it's full of hidden fats and sugars and you know, salt and butter and all those delicious things that We love and that's what makes restaurant food so good. But it's kind of hard to bolus for that stuff. Are you finding it easier? I mean anything on that in terms of home cooking, which I'm so sick of Ben, I am so tired of cooking. And my husband helps if he cooks too, so I'm just sick of it.
Ben Tzeel 13:13
Well, I can't blame you for being sick of home cooking because it gets to a point where I'm probably three months or so from having had something from the outside. And it's I'm just craving something
Stacey Simms 13:26
brought in a meal. You haven't brought anything in.
Ben Tzeel 13:28
I just maybe I'm paranoid, but I just I just would rather be like, you know what, at least I know, I'm dealing with the prep and I'm dealing with everything else. And when this starts to settle down, then I'll start to venture out and have all of the fun food again. Not that I haven't had fun. Trust me. You can make many fun things at your house. I know what you're making.
Stacey Simms 13:45
Yeah, no, I have friends who haven't brought any food in. I mean, we're not in that camp, obviously. But I know a few people who've done that
Ben Tzeel 13:51
Emilio wants me to really bad so we're working on it. We're in a negotiation right now. But to your point, I would say when you know All of the factors within what you're eating. So of course, you know that you've prepped it, you know, what you've put into it, you know, everything and everything. And there's no variables, there's no question marks. And we're not talking about the COVID part, but just about the actual composition of the food itself, then it's a lot easier to bolus for because you have all the answers. You have all the math right there when someone else creates something, even if it's something that, you know, Oh, I know, this is a bacon double cheeseburger, and I know I've had them before. And this is what happens. There's some sort of variability because that part of it is out of your control. And that lack of control can be difficult to account for granted. There's ways to take it in to consideration and be able to say, all right, this is what I'm going to do based on experience based on other knowledge, like put numbers and experience together and make a very educated decision and dose and do amazing with it. But just that little factor of there's other stuff in here there is that hidden fat you were describing. There's sometimes things are cooked in, in oils we don't know about there's sugar that might got thrown in there that you don't know. And then you end up eating some foods like that and you get frustrated you you have chicken alfredo and your blood sugar goes up to 320 for the next seven hours, no matter what you do no matter what you dose and you're just full of frustration the whole time.
Stacey Simms 15:14
So you work with a lot of people with type one and your background is nutrition. You have a master's degree, you're registered dietitian. I'm curious what the first change you urge people to make when they come to I know not everybody's the same. But you know, one of the questions maybe that you ask,
Ben Tzeel 15:30
I guess, coming from me, the first things I want to know is where people are starting out right now. Like, what are you eating? and kind of just getting you aware of what are you eating because as evidenced during this time, and this time, please put a magnifying glass on it more than anything else. But people kind of just go through the motions. They don't pay as much attention to, oh, I'm eating X, Y and Z. They just say oh, I'm gonna make whatever I can grab and I'm just gonna go for it and eat and then continue and a lot of people can't tell you what they ate for lunch yesterday. So my first goal is get them really aware, what are you eating? Start to kind of get a sense of it and then get them understanding. Are you making the meals complete? Are you getting your proteins, your fiber, your veggies? Are you getting them to the point where you're getting the nutrients that you need for both the body composition that you want, but also for the blood sugar control, because once you have the blood sugars and control, the body comes a lot faster, whether you want to lose weight or get strong. And once the blood sugars are controlled, you can do all the things in life that you really want to be doing.
Stacey Simms 16:30
I'm always worried about talking about diets, right? Because people want to lose weight, they go on a diet, people try all sorts of different things. We've talked about this in the past to me low carb, high carb, whatever it is, what do you find works overall, in general, for the people that you work with.
Ben Tzeel 16:45
For the people that I work with. I've had people on 400 grams of carbs, I've had people on 40 grams of carbs. The most important factors that I've noticed are getting enough protein into your life and I know a lot of people are concerned Oh protein is going to Your kidneys. But all the research, if you dig into it has shown that a higher protein diet is actually advantageous to the kidneys. I'm not saying you need to eat like five chickens a day, but at the same time, a substantial amount of protein. I would also say making sure you do get the fiber. That's why I tried to hit on those big three the protein, the fiber than the veggies, the fiber is going to be important whether you get that from veggies and fruit or whether you do get that from some grains. Some people do well on a decent amount of carbs. Again, it's that carb side of it is preference and everyone in diabetes is so fixated on it, when I can't stress enough where people that I've worked with are super successful on all levels of carbs, but having the protein, having the fiber, having enough of the veggies, those three things and then the other thing would be the 9010 rule. And that would be something where I would I don't know if it's actually a rule I may have made it up but it's 90% of the time you're eating on point you know what you're doing, you're making quality choices and that other 10% of the time you're enjoying the sunset You're enjoying the desserts, you're enjoying the finer things that life has to offer. Because life is too short to not enjoy food like that. And the last thing you want is you're constantly eating air quotes healthy. And now you're feeling deprived when you see all your friends eating these other things. And as long as you have a strategy on how to dose for it, so your blood sugar is going to be ultimately good. There's no reason to deprive yourself of having that and so many people are living limited in that scope of I can't have that because I have diabetes, that food scares me. This is awful. Like, I wish I could have that and you can have that. But allowing yourself that wiggle room of 10% that is usually enough to say hey, I'm gonna get the results I'm putting into a effort 90% of the time to get the blood sugar's get the body but then the other time I can enjoy everything.
Unknown Speaker 18:50
What's your big favorite 10% fool?
Ben Tzeel 18:53
That's Oh, that's a loaded question. I was gonna say there's a restaurant here called dance and dance. And Tampa has these loaded nachos that are so good. They're like a once every six month kind of thing, but they've got like the cheese and the pulled pork, and they've got the beans and they've got the ground beef and honestly, it's actually not a terrible meal in general but there's just so it's so calorie dense. That would be one cookie dough for sure would be one. The edible cookie dough not like cookie dough. That's raw eggs. And then Honestly, I have to say this but have you had cookie butter before? I have not had cookie pokey buttered so I love cookie. What is it cookie butter? It's I don't even know how to describe it. There's like this. I know the first time I had it was from Trader Joe's and then they have some everywhere apparently I didn't know it was a big thing. But it's literally like the butter form of cookie. It's like imagine peanut butter consistency but it tastes like a cookie and it's basically straight fat and straight sugar. But it's so good. Oh my God. That is my guilty pleasure. I will not lie. That's It's so good. That Great,
Stacey Simms 20:00
okay, he's got some advice. We've You know, we've gotten some insight into how you operate. I know you have a new program that you're working on, tell us what this is all about. How can people take part?
Ben Tzeel 20:11
Absolutely. So I have a program called blood sugar boss, because everybody wants to be a blood sugar boss, you want to be in control of your blood sugars and in control of your life, getting the body that you want, and literally living life without any kind of limits. And so the premise is, you're going through and restaurants become no big deal. You can walk into a restaurant by the end of this and point out what you want on the menu and say I want that and know how you're gonna dose for what your game plan is going to be. No questions asked, like the on the exercise side of things with respect to blood sugars going low constantly, that part's eliminated. You know, you go and exercise no matter what you're doing. We're eliminating the lows. we're eliminating the highest you can truly do what you want to do without having any concerns and actually focus on The exercise instead of Oh my god, what is my blood sugar going to do? Then of course talking about the food side of things to make sure that you know what choices need to go into that 90% what choices need to go to that 10% and when you do go in that 10% How to dose so you're not concerned? Oh, man, I'm going to be 300 for the next six hours. I know exactly what to do for that. I mean, we're going into travel when travels the thing again, you know, we're making sure that you go on a trip, you're like, Okay, instead of vacation being stressful, this is no big deal. We're hitting everything on all different kinds of angles. And by the end of it, you can walk away from it saying, I am in control, no situation will faze me and this is literally everything I need to know about diabetes, and I forgot one of the other big things were kick starting your metabolism up. So you're going to be able to be prepared to get stronger and lose weight. At the same time. I'm curious you you share a lot as I mentioned on inside on social media, and the other day, I saw you share a post where you were over 300 for a while, you know, you had I think it was at a Ben canula or something like that. Are you concerned that when you share something like that, right? Do you get feedback from people saying, how could you that's so dangerous? Or, you know, how could you let that happen? I'm curious what kind of feedback you get when you are that transparent, because, you know, we all know that's gonna happen, right? And I think if there's a lot of people out there that go on social media, and they act a certain type of way, and they say, Well, my blood sugar's are great all the time. And my numbers are always the decks combined, it's flat, and everything's awesome. And that's cool. You can share that. But that's just sharing the highlight reel of life. People are almost afraid to show the authentic side of the side of them that shows I'm human that I get that annulus to these things do happen. And so I feel like by showing that, it's like, Look, I'm not perfect, I've never been perfect, and there are people out there who I'm sure have had that situation happened to them. And if anything, I think it makes you more relatable. And it's okay to put yourself out and say, Hey, this does happen to everybody. Oh, my goodness, you can eat the same thing at the same time every single day and get a slightly different result. So, in that situation, it's part of life. Everybody goes through it.
Stacey Simms 23:15
Before I really let you go, I had to laugh when you said blood sugar boss. Because when Benny was was little, I mean, he was diagnosed before he was two. So we had to use all these, like really kid friendly ways of talking to him about diabetes. And I remember when he was about four or five years old, we started talking to him about like, being the boss of diabetes, you know, and little kids like to boss stuff around. Little kids have no control over anything, right? Everybody tells them what to do and where to sit and when to wake up, or when to go to bed and what to eat. So they have no choices, and sort of get to be the boss of something was really cool for him. And then the flip side of that was I had to say to him, Look, if you were if you're not the boss of diabetes, it's going to become the boss of you. And it really worked for a long time to help us teach him and but it's so funny. I forgot all about that. Until you mentioned The name of your program. So thanks for bringing that memory back up. It wasn't something that I had remembered. But it's so important because if you don't take control over it, you mean, you have no choice, it will take control of you.
Ben Tzeel 24:11
Absolutely. And that's, that's the whole goal here is like you said, you have to be the one that's saying, I am going to actively take control over this because otherwise your life is run by diabetes, whether you allow it because you allow it to you don't take back the power from it, and you don't say, this is my life, this is what I want to do. And if you don't actively make that decision, it's gonna make it for you. And you don't want someone else or something else. In this case, diabetes making that decision for you want to live life on your terms. So you need to make sure that you are a blood sugar boss.
Stacey Simms 24:43
I love it. Well, thank you so much for joining me. Thanks for sharing the program all the best with it.
Ben Tzeel 24:47
Oh, thank you so much. I'm just glad to be able to help more people in our community and I'm just thankful for the opportunity to chat with you as always, that's always an awesome time on here.
Unknown Speaker 25:01
You're listening to diabetes connections
Unknown Speaker 25:03
with Stacey Simms
Stacey Simms 25:06
more information about Ben's program blood sugar boss in the show notes and I'll link up his Instagram account as well now I'm gonna have to go back and look now because I do get a kick out of the bonkers food that he posts like these big portions and you know wild desserts and things once in a while, but I'm thinking now he said that they had been eating at home and creating their own stuff since the stay at home order. And now I really want to take a look and see what they've been making because we've been cooking a ton I think just like everybody, right? But I haven't been baking or making desserts. My daughter I have an 18 year old daughter and she likes to bake and she's been making cookies and brownies and stuff like that, but I'm not getting creative when it comes to desserts. I like to eat desserts, but I'm not making at this point. I am barely making dinner. I am so sick of Okay. All right. Well, you know good problems to have, I suppose.
The author of the book actually I can is our Tell me something good this week, but first Diabetes Connections is brought to you by Dexcom. And we've been using the Dexcom G6 since it came out two years ago now, and it's amazing. The G6 is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warmup and the number just pops up. I know it sounds funny if you're newer to Dexcom but we've been using it for seven years now. And when you're used to calibrating you know, and not getting that number automatically, it really does. It just seems so different. The G6 has longer sensor we're now 10 days and the new sensor applicator is so easy to use, but he does it all himself. Of course we love the alerts and alarms and we can set them however we want. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes, Connections comm and click on the Dexcom logo.
Morgan Panzirer is our Tell me something good this week she was diagnosed With type one when she was six years old, that's obviously not the good part. She is now 19, a college student who would like to become a pediatric endocrinologist. Now her sister also lives with type one. Morgan started writing the book that we're going to talk about here in middle school. It's called actually I can, Morgan was great to talk to you. She was very patient with my questions and my ignorance about equestrian sports. Here's my interview with Morgan Panzirer. Morgan, thank you so much for spending a few minutes with me. I'm really excited to hear the stories behind the book. Thanks for coming on.
Unknown Speaker 27:32
Yeah, of course. I'm so happy to be here.
Unknown Speaker 27:34
What gave you the idea to write this book?
Unknown Speaker 27:37
I started writing it in seventh grade for two main reasons. The first was I was fed up with all the misconceptions that people with type 1 diabetes hear every day, for example, Oh, you got diabetes, because you ate too much sugar things along those lines. So I decided that maybe if I could tell my story, I would be able to kind of change the way the general public views this disease. The second reason I wrote it was because I really wanted to empower others living with Type One Diabetes and show them. That doesn't have to be something that holds you back. Rather, you can use it as an opportunity to do whatever you want to do. So
Unknown Speaker 28:14
you started writing in middle school, but you were diagnosed at age six, much younger than that. Do you remember your day? Your diagnosis story?
Morgan Panzirer 28:21
Yes, I'll never forget. It is so clear in my mind. I had been drinking and peeing a lot. So my mom knew the signs of Type One Diabetes because she was a nutritionist. Yeah, so my mom knew the sign. So she decided to ask my pediatrician to test me just to humor her. She was sure it was nothing but she said, just test it anyway. So she did and a couple days later, my pediatrician called us I'll never forget exactly where we were in the car. And she said to my mom, I'm so sorry to tell you this, but Morgan does have type one diabetes, and my mom just immediately started crying. We were all shocked. We went to the Naomi berry Diabetes Center at Columbia the following day. And from there, it was just, let's get through this.
Stacey Simms 29:07
So your mother was a little bit familiar with it, but in being a nutritionist, but I can't imagine you knew at all who you're in for, and especially at age six,
Morgan Panzirer 29:15
no, I had no idea. And I vividly remember being in the car driving to New York City The following day, and saying to my parents, everything will be fine. As long as I don't need a shot. Little did I know, every day of my life, I was gonna have multiple needles among the finger sticks and other things. So my parents didn't really know how to explain it to me, and it was definitely a rude awakening for the next few days to come. When you started writing, did you share it with anybody else? Was it just for you at the time? Yes, it was just for me at the time. No one. I didn't really tell anyone about it. No one really knew that I was doing it at all. I was very private about it. But as the years went on, I eventually decided to tell my parents and they were like, you are What? So it was kind of fun. It was. It was a long process. But yeah, the beginning it was definitely just a very personal thing for me. And then your younger sister was diagnosed as well. What was that? Like? How old was she? How old were you at the time. So she was 13 when she was diagnosed, she's now 16. So I was 16 when she was diagnosed, and that just broke my heart because I had had diabetes at that point for 10 years. So I totally knew what it was like, and it made me think I would not wish it on anyone, especially someone in my own family. So to see her kind of struggle with it, and because she was diagnosed a lot older, I think it was hard for her to kind of get through it because she knew and remembered and understood what life was like prior. And now the fact that you have to make put so much thought into eating an apple, I think really kind of threw her for a loop, but I was really happy that I was there and could kind of show her the ropes and show her that this doesn't have to be the end It won't stop her. She doesn't want it too.
Stacey Simms 31:02
It sounds like you have a really good relationship with your sister. But you know, it's gotta be hard to you know your sister. So I don't want to make it like it was a perfect relationship, but due to diabetes in some way for you closer, I mean, I kind of hate that because it's a cliche, but you to share it and experience that nobody else in your family could really understand in the way you were going through it.
Morgan Panzirer 31:21
Yeah, it did. I would definitely say that it brought us closer. I mean, we always had a great relationship growing up. I mean, she was the only other girl in the house besides my mom. So we did everything together anyway. And we did have a really good relationship. But this definitely was something that I could share with her and I couldn't really relate to something like that with anyone else. So I think we, I mean, we don't talk about it a ton, but it is something that if I'm having a terrible day, I'm like, Oh, this stays the worst. And she's like, Yeah, I know what you mean. So I think in that way, it definitely makes it easier for sure.
Unknown Speaker 31:57
Okay, so you grew up in a household where After your diagnosis, your parents jumped in with both feet for advocacy. And they jumped in in a way that is unique because your dad is a trustee of the Helmsley trust, which is a as you listen, if you're not familiar, just an unbelievable funder of so much Diabetes Research and so many diabetes advocacy causes and effect. We had your dad on the show last year, but he is a very passionate person, as you know, Morgan, where he was really talking about the need for better education when people get great diabetes devices. And you know, trying to help in that respect. What was it like to know that what happened to you affected what your parents did with their lives? I mean, there's put so much time and energy into this cause,
Morgan Panzirer 32:39
oh my gosh, yeah, it was unbelievable. I mean, my dad became a trustee shortly after my diagnosis. So again, at six years old, I had no idea what that meant. But as I grew up and saw the impact he's having on this community and everyone with this disease, I'm so grateful that he went this way because I really do believe that he's making enormous differences in this community. I've already seen tons of new technologies that have come out, in part, thanks to his funding. So I'm so grateful. And my mom actually has she's a big runner. So she's run numerous half marathons and marathons with jdrf to raise money. So the fact that they're just all in for me and my sister is, there's no words to describe it. It's unbelievable. You've been able to do a lot of things yourself. You were a children's Congress with jdrf. That was in 2009. So how old were you when you did children's Congress? I was eight when I when was that something that was meaningful to you? Yeah, it was a really monumental event, I think because it really marked the beginning of my advocacy. And especially being that little I didn't really understand that I could make a difference prior to this. But when I got there and saw oh my gosh, all these kids are going through the same thing I'm going through and look at this difference we're making on a national level, I think it really showed me that I did have the ability to make a change if I wanted to, and if I set my mind to it. So it was definitely a big step for me and understanding that I had the ability to make a big change for everyone with this disease. And it definitely marks the beginning of my advocacy, as I mentioned prior.
Unknown Speaker 34:19
So tell me about advocacy for an eight year old. I know because I just people listening are kind of thinking like, well, what else? You know, there's children's Congress vote what really can an eight year old do?
Morgan Panzirer 34:27
It was crazy because we're at Children's Congress. We're talking to our senators. I didn't even know what a senator was. I was like, Who are you? Like, you seem really important, but I don't know what you do. Um, but it was really just a place for me to learn and understand and it opened a bunch of doors for not necessarily when I was eight years old still, but when I was older, it really just allowed me to understand, okay, I can do this and I can make a change and talk to these super important scary people. If I want to so I wouldn't say necessarily started my advocacy at eight years old, but it definitely opened that door and set that path or the years coming up.
Stacey Simms 35:10
So in the book, actually, I can you mentioned, you know, sugar and misconceptions.
Morgan Panzirer 35:15
Are there actually, as I say, actually, are there questions that that really have followed you that you would answer? Actually, I can. Oh, there's so many. It's funny, you should say that. Because one of the chapters towards the end of the book actually has a bunch of things that I've heard people say prior about this. And my answer to each of them is actually I can so that's really funny. You should bring that up. So yeah, it's all surrounding kind of the sugar aspect. And that always drove me crazy. Like, oh, you Sorry, you can't have this ice pop. It's not sugar free. And to that, I would say, Actually, I can. So it's really funny that you should bring that up.
Stacey Simms 35:53
Well, I mean, it's something that I think many people with diabetes experience over and over again to the point where you have to decide Are you going to be annoyed and be sarcastic? Or say nothing? Or am I going to be annoyed and continue to educate? Right and that second one, even just as a parent of a child with type one, I try to choose the second one as often as I can, but it really does wear on you. So when I saw the name of your book, I was like, totally can relate.
Morgan Panzirer 36:19
Unknown Speaker 36:20
And you ride correct. That's your sport is, is I'm gonna say it incorrectly as horseback riding.
Morgan Panzirer 36:26
Yes, that is my sport. How do I say that? What's the real sport? equestrian sports? Thank you,
Unknown Speaker 36:33
Unknown Speaker 36:35
I've not talked to somebody with type one who is you know, involved in equestrian sports. Can you tell us a little bit about how you go about doing that? I mean, because obviously, there's got to be equipment, requirements of the sport and concerns about a pump and a CGM. So
Morgan Panzirer 36:50
what do you do? Absolutely. So I started writing actually right after my diagnosis, and at the beginning, it was fairly easy to manage my blood sugar's Because I was young and just doing beginner things, but as I got older and obviously I started wearing a CGM a little later I got a little more difficult because I was riding for longer I was doing more difficult things. So it became a game of trial and error to kind of find the balance of Okay, I need to cut back my Bazell this this much time prior to getting on and then afterwards, I should sip on a Gatorade. So it was a big game of trial and error that definitely got frustrating at times. But then the whole other battle was at horse shows because when you horse show, you're not allowed to have a phone or any sort of electronic device on you. So I'll never forget there was this one show I was competing in and I go in and I do my course. So I do the jumpers for anyone that knows. So I go in, I jump my course and I come out and the judge walkie talkie over to the end gate where you enter the ring and said she has to be disqualified because she has a phone on her and I was like I don't Promise you like, I'll show it to you. It's not a phone. So they ended up being understanding but after that I had to really be conscientious about prior to stepping in the ring, having the person that was managing the in gate radio over to the judge and say she's that does not have a phone. She's wearing an insulin pump. So that was something I found really interesting. Um, but yeah, it was it's definitely an interesting sport to have type one and do for sure. Well,
Stacey Simms 38:28
you know, and obviously, you had to educate them and now hopefully the next time somebody comes through that way, they would know that a pump isn't a phone, but I'm curious too, you know, obviously writing horse is not driving a car, but it is one of the few sports where you're, you're not alone, right you have to stretch but work with me here. In a way you're you know, you're controlling the horse you're in charge, you have to be in your you have to have good enough diabetes control, that you know, if you're going low, you can Have you could have an accident you could get seriously injured for sure. Yeah. I mean, that's got to be something that I know your parents would be worried about. But as an athlete, it's it's a little bit more consequential in a way than like my son. He's played every kind of sport but if he goes low and basketball, he's probably you know, he's just gonna get himself off the court. He's he's not taking a horse
Morgan Panzirer 39:21
Yeah, it's, it's interesting because there have definitely been times where I'm so invested in riding and what I'm doing that I don't even realize how low I am. So I really have to be careful and always be watching I wear my Apple Watch which is a huge help because I just clicked the Dexcom app and my blood sugar pops right up. So that's made it a lot easier but as you said, there's definitely an added component of stress because if something happens to me, I'm either a gonna fall off and get seriously hurt or be by horses going to be running around loose in the ring. So
aren't really ideal circumstances. For sure,
Stacey Simms 40:00
my apologies to you and anyone listening who is familiar with equestrian sports hearing me painfully make my way through trying to describe. But I appreciate it. Obviously, your parents have read the book, and they must be so proud of you. But was there anything in there that you thought? I don't know if I want my parents to read this? Are you? I mean, I know it's nothing terrible. But you know, in terms of, I think sometimes the people I've talked to with type one, are worried that they're going to make their parents worry more, even as adults, they just don't want their parents to worry. And I was curious if that went through your head at all, as you were releasing this book?
Morgan Panzirer 40:35
Yeah, I mean, there's one chapter in particular that comes to mind where I'm just very raw about my emotions. And at home, I'm not someone who's like that. I'm very quiet. And if something's bothering me, I'll go to my room and deal with it there. So I think putting that all out on paper and having that kind of out to the world and then have my parents read it. I don't want to say I was hesitant, but it was it was interesting because I didn't really know how they were going to react to me being like, Oh, I broke down into tears because they don't usually see me do that very often. So I was, I was a little scared as to what they would think like, Oh, no, is she like crazy at our room? Like what is she doing all the time, but I think they just they were very understanding like, if this is how you want to deal with it, this is how you deal with it. You do whatever you need to do.
Stacey Simms 41:25
When I was looking it up on Amazon earlier, I laughed because you know, Amazon has that if you bought this, you might buy that or, you know, bought and there was my book, there was the world's worst diabetes mom and a bunch of other great diabetes books too. But I laughed because I guess with the teenager in the parenting, maybe they put it together. You know, the world's worst diabetes mom is not about really being a terrible parent. It's about the insecurities that we as parents have when we make mistakes with our kids. I'm curious for you. It sounds like your parents gave you an awful lot of independence and had a lot of confidence in you and I Assume your sister as well. Any message for parents of kids with type one who think we're just messing up and we're the worst?
Morgan Panzirer 42:07
You're not the worst, I can start by saying that. I think I would say try to give your child as much independence as possible without making it unsafe. My parents, as you said, gave me a ton of independence. And I think it worked really well for me, but it's also really different. So what works for me may not work for my sister. So you kind of have to be willing to cater to your child's needs and what you think will suit them best. But independence for me was key.
Stacey Simms 42:36
And then I'll flip it around and say, okay, you're you're a college student. Now you're you're not you know, you're not quite done with being a teenager, but the high school experience is behind you. Any advice for teenagers? type one?
Morgan Panzirer 42:47
Yeah, I would say teenage years are tough just because your peers are naturally a lot more judgmental than they are when they're adults. Do what you do. Don't hide anything. If they want to be jerks about it. Let them be jerks about it. That's their problem. And just don't let them get the best of you because I was bullied by freshman year of high school for wearing a CGM on my leg and was shorts on and things like that. So I would just say, don't let the haters hate who cares, they can do what they want.
Unknown Speaker 43:18
And for you now, what are you studying? Did I read you want to be an endocrinologist?
Morgan Panzirer 43:22
Yes, I am studying biology in Spanish on a pre med track. And I'm hoping to go to medical school for pediatric endocrinology. Did you have an endocrinologist growing up that inspired you? When did you realize you want to do something like this? It's funny, it was kind of the opposite. Hopefully, he's not listening right now. He wasn't bad by any means. But I just thought it would be really cool if I had an endocrinologist who also has type one who can relate to what I'm going through and make me feel like I'm not alone. So if I want that from my endocrinologist, I want to be able to give that to others. So I'm hoping that eventually, if I make it through med school, I'll be able to give that experience to younger children who are also fighting type one. That's great. And then someday you could do the next book, which is actually you can Exactly.
Stacey Simms 44:18
Work it. Thank you so much for talking with me. often don't hear about those teen years and growing up with type one until people are adults, so I can't thank you enough for sharing your story. I really wish you the very best with this.
Morgan Panzirer 44:28
Of course, thank you so much for having me.
Stacey Simms 44:33
I will link up more information about Morgan's book, just go to Diabetes connections.com click on the episode homepage. As usual, there's also a episode transcription. I started doing that in January of 2020 of this year, we're slowly going back the catalog I'll probably put the transcripts in for past shows as well. But you know, there's a lot of shows we're up to episode This is 310 if you're keeping track so I'm doing the best I can with transcriptions but 2020 and going forward getting great feedback on that. And thank you, I really appreciate hearing from you. If there's something that you really like or don't like with the show, and the transcriptions have been a big hit, people listen to the show people read the show, and some people listen while they read the show. However, I can serve you That is what I'm here for. And I'm kind of laughing. But really, that's one of the reasons why I wanted to add the transcriptions. I think there's some excellent information. It's not about me, it's about the information and if you can read it, I know some people just prefer that. So very cool. Thanks again.
And, you know, when you go to Amazon, and you see, it just makes me laugh, right? The you see Morgan's book with my book. I don't know why it makes me laugh. I mean, I'm a serious author now. But I do get a kick out of serious author (laughs). I do get a kick out of seeing people I know or have met, along with my book. It's just really a lot of fun. I don't know. Maybe it's silly, but I really get a kick out of it.
All right, great month of shows coming up. I'm very excited about July because we're going to be talking about selecting an insulin pump, not which pump is best, but how do you select one that's like the number one Question all these Facebook groups? What pumps should I get? What pumps Should I get my kid? We're also gonna be talking about pancreas transplant. I've wanted to talk to somebody who had a pancreas transplant for years and years because you hear you know how difficult it is or how does it even happen. And so we've done that and I'm really thrilled to share that interview with you in the coming weeks. And of course, the fiscal would squares. That chaotic show will be out soon as well. So lots of good stuff coming up. More on the way. Thank you to my editor, chunky tennis solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, kind to yourself.
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged
In-depth with a teenager who lives with type 1. Stacey interviews her son Benny, who was diagnosed just before he turned two. They talk about Control IQ, explaining what diabetes is to people who don't know and what he does these days for sports and other activities.
Benny answers listener questions and looks back on 13 years of T1D.
In TMSG – graduation good news, two popular diabetes books get an update and more
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 in depth with a teenager who lives with type one, okay, it's my son Benny. We covered a lot of ground here answering your questions including sports, what he tell his teammates when they travel for sports and stay overnight.
I tell them that nasal spray thing - Baqsimi if I don't wake up or if I pass out, do that and then go get coach.
Stacey Simms 0:47
We talked about feeling self conscious about diabetes gear, what he remembers about being a little kid with type one and his feelings about the new Control IQ system. I think this interview was a good idea?
Tell me something good graduation news two popular diabetes books get updates and more. 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 am so glad to have you along we aim to educate and inspire about type 1 diabetes by sharing stories of connection. If you are new Welcome, my name is Stacey Simms. I am your host, my son Benny, who you will hear this week was diagnosed right before he turned two. He is now 15. My husband lives with type two diabetes. I don't have diabetes at all. But I have a background in broadcasting and local radio and television and that is how you get the podcast.
Before we get to Benny and oh my goodness. Like I've already said I'm hoping this was a good idea. I think he has good information to share. It's a little odd to interview your own son. But before we get to him, I have some great news of my own to share the world. First diabetes mom, my book that's been out for a couple of weeks now won an award, my publisher sent me an email. And by now I've probably shared it over social media, as you're listening to this spark publications announces that the world's worst diabetes mom has won an award of distinction as part of the 2020 communicator awards. This is part of the Academy of Interactive and visual arts. I'm really excited about this.
Of course, it's not just about the writing, but about the design of the book. And we work really carefully on that the cover alone, we went back and forth quite a bit, but then inside to make it really easy to read. And a nice experience. I mean, oh, my goodness, I was who knew so much went into things like this. I mean, when you think about it for more than a minute you get it. But Wow. If you've ever been involved in any kind of book publishing, there's a lot of steps to it. So it's very exciting to see all of our hard work rewarded with this award. So thanks for indulging me and letting me talk about it a little bit. The book has really been an incredible excuse. For me, and I hope if you've read it, you've enjoyed it. I hope if you haven't read it, you'll consider giving it a chance. You can always learn more, of course at the website Diabetes connections.com. But the book is for sale on Amazon paperback ebook, you know, Kindle and audiobook which I married.
And if you're listening to this episode as it first airs on Tuesday, the 26th of May, then tomorrow night I'm actually doing a world worse diabetes mom event with jdrf a couple of the southeast chapters got together we're doing a zoom presentation all about it, sharing our mistakes and mishaps what we learned from them and why they're just the best way to go right? You got to make all the mistakes when it comes to diabetes or parenting in general. And I'll put more information about that in the Facebook group and on social media. I'd love to have you join us.
All right, my conversation with Benny in just a moment but first Diabetes Connections is brought to you by One Drop. Getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance about 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 leaves 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 was pretty easy to book because I know his schedule. He lives in my house. He is my 15 year old son. And if you've listened to the show for a long time, you know I really try to balance how much I share about Benny's experience with type one. It's a balance of, you know not oversharing to compromise his privacy, but also sharing them To help people, he's always been a really good sport about it. And we've really weighed and measured over his entire life because he was diagnosed at 23 months, how much to talk about him. I mean, even really before that, because I was on the radio when he was born. I mean, both of my kids, I was a local TV reporter when I was pregnant with Lea, my daughter, and I was in radio, I was at WBT where I worked for a decade doing the morning show there. I think I was there for a year before I got pregnant with Benny. And so my listeners went through that process with me. You know, they saw me out at events and it was a whole big deal about, you know, how much are we going to talk about how much are we going to share, and when he was diagnosed with type one, and my listeners wanted to learn more, we had to go through it all over again.
So I err on the side of sharing less, which may strike you as bananas because I just talked to my book where we talk about all our stories and our family stuff. But I really do I mean, if you look at a lot of the mom bloggers out there, and especially the Instagram people, you know, I really don't share our day to day. I don't think that's fair to him. I'm saying all this I'm sorry for the big lead up. Because it's hard for me to interview Benny, it's hard for me to kind of push and probe for more. He's funny, as always, he gives great information, I think, of course, he is 15 years old.
A couple of quick notes to that. 15 years old, and really goofing around on the microphone. There's probably more editing than usual in this episode. So please forgive us if parts of it sound a little choppy, although I'm sure my editor john, you can smooth most of that out. But really, there were times where I really I just, we were goofing around so much, I had to cut it out. And there's a little bit at the end to give you a taste of that. And I mean, the very end of the show, I included it's not really a blooper, but it's just oh my god, what he was doing with the microphone.
Also, he does say this is the only correction I'll make. We talked about Control IQ and he says he's in range 80% of the time. I wish. It's still excellent. It's closer to 70% of the time, which is wonderful and it's certainly a lot less work. We talk about that a little bit too. But I have to correct that he is not in range 80% of the time. And the only other thing is listening back to this. I don't want anybody to misunderstand. We are mean to each other. I mean, I call him a couple of mean names. It's just our relationship. I mean, it's kind of the way we pick on each other. If you don't know us, too well, I'm just a little worried that you might think we're really mean to each other. I think you can hear that. It's all in good fun. We are so fortunate to have a great relationship. But it's been a while since I had him on the show. And you all had a bunch of questions for him. So I asked, he answered. Here's my conversation with Benny.
So how are you holding up? I'm good. All right. Well, we got lots of questions for you. From listeners and the Facebook group, you started on Control IQ at the end of January. And we were well past three months now. Use any perspective Any comments? What do you think Vinnie? You'd
No, it's much better than it was before cuz I'm in range. Like 80% of the day?
Unknown Speaker 8:02
Yeah, it's wild. What have you noticed in terms of me?
I'm curious if you're much more now you like, Is it working? Is it working? Is it working? No, I'm not.
Stacey Simms 8:15
Any tips or tricks? You don't bolus when you're on the higher side, right? Because we found that that kind of
plummets you. Yeah. Don't do to see but in Control IQ, it won't bring you up from lows.
Stacey Simms 8:27
But you still do to receive and Control IQ
because I like juice.
Stacey Simms 8:31
Cuz you like juice? Yeah. You're an idiot. What?
Alright, so you use Control IQ, and you still take a daily shot after Seba, even though your insulin needs have gone way down. Why do you continue doing that your Seba?
I don't know.
Stacey Simms 8:48
Well, you know your mother mentioned you might want to stop and you said no, I thought you had a reason less insulin usage. You mean like in the pump, you don't use the cartridge. You should try it. You're not really using balance. Well, now we have to talk to the endo again and okay. Would you think of the telehealth visit that we did by the way? That was rough.
It was rough about it. You guys couldn't find any. Oh, yeah, we had probably his first one.
Stacey Simms 9:14
And he didn't have clarity and he didn't have to connect up even though the office said that they did. So it was a little weird, but were you okay with just talking to him that way? Well, yeah, I mean,
it's better in person. Because that our interests are pretty cool guy. Let's get to the questions
Stacey Simms 9:29
in the Facebook group, Rodney Miller. Hi, Rodney, who runs bolus and barbells he said Why am I Benny's favorite? strong man diabetic.
My favorite strong man diabetic actually for your information? Cuz I'm the best Oh, you're those favorite strong man. Oh, all right. Well, we'll see you guys in competition. Maybe I can guide when armwrestling contest. I don't know man. my biceps are massive friends for
Stacey Simms 9:52
life. 2021 showdown. Rod me and Betty. Okay. Ronnie says does he feel does Betty feel like having Such a strong advocate for a mom has provided him unique opportunities to connect to the diabetic community.
Yes, would have never met Rodney. Ernie almost got the chance to meet the rock was very close to that. Brick bassinger those people are pretty cool friends for life is a lot of fun. Justin Thomas, Jeffrey, those guys are pretty cool, too. I don't think I would have really met them without mom. You know, no one's putting us in trials. So you know, is that
Stacey Simms 10:30
isn't that funny that we can't get you into a clinical trial?
I think they it's obvious that they know we're just too cool. They don't they don't want to risk something not working on people that are just so awesome.
Stacey Simms 10:41
But we'll keep trying. All right. Shelby wanted to know, when you were younger, what did you say when other kids asked about your pump or CGM? How did you handle the curiosity of other kids
said I'm a robot. I still say I'm a robot and then I actually explained it. I remember one time a gorgeous went What's this and ripped up my pump? Wow, that was Fine. I don't really remember anything. Besides that.
Stacey Simms 11:02
I remember when you were, and this might be the same story when you were in preschool. They told me that you were all kind of like lining up to go to the bathroom or something. And the kid behind you said, Hey, what's that and started to pull on it, and you turned around, and you were like, three? And you're like, that's my diabetes. And you were very straightforward. Like, don't mess around with that. Don't touch that. That's mine. Or I guess, like, touch my diabetes. You're like, but you were always we're very lucky because you were always very straightforward about it very open about it. And you never have seemed to minded
Well, yeah, no, I don't care. Like if you don't like me, because I have diabetes go away. You suck by God, what am I gonna say? Like, Oh, no, darn.
Stacey Simms 11:45
Well, you know, you're not self conscious about it, which I think is, is wonderful and made it easier for us. But I don't know how you teach that to somebody, right? You just have always been that way.
I just kind of like I need it. Don't touch it.
Stacey Simms 11:58
So I guess the answer is you've been very straightforward about it little humor, but mostly not hiding it and saying here it is.
Sometimes I trick my friends into thinking they're giving me insulin, I disconnect my pump and I give them the pump and they still think it's connecting. They go, can I kill you? I say yes. And then I let them give me like six units, and they think that I'm gonna die. And it's really funny. Why would you tell me that? Because it's funny.
Stacey Simms 12:20
Why that is terrible that your pumps all messed up, especially with Control IQ. We think I don't
do that much anymore. Okay. So like, once, once, once every other month. This is more like a fifth grade thing. Yeah. Please tell me you don't do that anymore. I do it like once. Maybe I did it once with Jackson.
Stacey Simms 12:37
I'm gonna kill you. Okay. Let's see. Dee writes as a teen athlete. What are your best tips to manage on your own during a sports event or overnight sports trips. We have a lot of those this year.
We have but I wasn't
Stacey Simms 12:50
competing. I know which is why I wasn't which is why it was very easy for me
to let you go. I don't think it's very smart to be on your own with anything. ports, you should have at least one person with you that knows what's going on. Just you know, just in case but like, if you are alone, which is again, not smart,
Stacey Simms 13:08
she means on your own without your mom or dad, because you're on a trip is not going to be like the coach is going to be there. The team is going to be there. So why don't you talk a little bit about what you told the kids when
I first joined the team coach made us all sit down and made me tell everyone what was up. Basically all I told them was I have diabetes. It sucks. If I faint there's a thing in the in the pouch that you stick up my nose or you go to coach or the athletic trainer. Don't let me die.
Stacey Simms 13:39
Well and when you go on overnights you're not alone in the room, but there's not an adult anymore. Yeah. So what do you tell the kids that are with you?
I tell them the thing like the the nasal spray thing. So like see me if I don't wake up or if I pass out, do that and then go get coach.
Stacey Simms 13:57
What do they say? Are they like okay, yeah, they don't Nobody seems freaked out in there.
I mean, a bunch of them are scared of needles and it's fun to mess around with them but
Stacey Simms 14:07
and I do send you you know you have a kit, we make sure that there's lots of food and drinks and all that stuff. And you have your snacks and your your Welch's fruit snacks. That's one thing that made it easier in a way last year you weren't competing because you had your knee injury. So I wasn't too worried about the ups and downs this coming year, assuming all goes well and you wrestle again. I'm not exactly sure what I'm going to do for those first couple of overnights. Well, you said it like I was gonna ask you what to do. I'm not I'm either going to come near and stay nearby. Oh, no, dad,
if anyone's coming is that
Stacey Simms 14:44
that's a great idea your father can go. I don't think I would like I'm not gonna make you stay in the hotel room with me. You can still say with your friends, but especially with wrestling until we kind of figure out what your body's doing. I think it's really important to get a baseline and then get some protocols and figured out out from there, but I don't I don't intend to sit on You don't worry. I like this one. Kristen says, Is it true that Benny has the best mom ever?
No. Oh, you're off the show. No one has the best mom ever. It's literally not possible. There's like a couple billion moms. You know, Mother's Day is just passed.
Stacey Simms 15:20
But that was a missed opportunity, my friend.
Unknown Speaker 15:22
I mean, she's pretty good, but
not the best missed opportunity.
Stacey Simms 15:31
Best you ever had. Okay.
Right back to our conversation. And the next question is going to be advice. What would Benny tell his younger self? We'll get to that in just a minute. First, diabetes Connections is brought to you by Real Good Foods. And on their website. They have real reviews from real people, which makes sense because you know, this is all about real food. You feel real good about eating. And what's nice is with the record As you can see, it's not just people who eat super low carb or who eat keto. There are people who have celiac who can't eat grain. There are people who just love the way the food tastes right? There are people who talk about the airfryer, which is a great way to make so much of their food. It is delicious. We are big fans of their they can put this in the airfryer we're big fans of their new ice cream. And we really love the cauliflower crust pizzas as well, which do really well. In the airfryer find out more, just go to Diabetes connections.com and click on the Real Good Foods logo. Now back to my talk with Benny asking him your questions.
Mary says what advice would he tell a younger version of himself about being a teenager with diabetes? So I guess she means what would you say to yourself back
then? Keep doing what you're doing. You'll be fine.
Stacey Simms 16:56
I think that's an excellent advice.
Yeah, I was a pretty good child. Questions like, Oh, I wish I had depression. No, I was the best.
Stacey Simms 17:04
I think the only advice that you should give your younger self is, if you take your pump off to play football in the neighborhood. You might want to put it someplace smart like a mailbox, just because I lost it a couple of times worse,
just because I lost it a couple times. It doesn't mean you have to bring it up again. We always found it. Yeah, I'm pretty good. You're pretty good. Yeah. Your mother had to go your mother. Who is that? Oh,
Laura says does he have any good one liners when people ask about his tech? I'm a cyborg. You have so bad. And people believe me and it's really funny.
Stacey Simms 17:39
Okay, so here's an example. We'll go to someplace brand new and you make friends everywhere you go, which is
amazing. I'm kind of jealous of that. So we'll go to the beach where a smile. Yeah, we're just I just wear a smile, where it doesn't have to be real. Where I
Stacey Simms 17:52
smile. We'll go to the beach. And you will, you'll make friends but you have your shirt off your decks calm with the beginning. Put thing on, you know, either on your arm or your stomach. Do people ask about that? And they want to
tell him I'm a cyborg.
Stacey Simms 18:06
I'm so serious. And then do you kind of go into any more detail? Not if they don't ask. They just leave it at that. Most of them most of the time. They just leave it at that. That's funny. Okay, so this the next couple of questions came from a different Facebook groups. So while I know a lot of people in the podcast group, these came from a different on a group of moms with elementary school aged children, you know, saying this just as much for the listeners as I am for you. smart alec. has been he ever been bullied over having diabetes. So
let's talk about that. Then. No. Okay, unless I don't remember.
Stacey Simms 18:40
No, no. Let's talk about why you think you haven't been bullied about diabetes or picked on? I think part of that is because you were always a bigger kid. Right? So nobody was mad. No. As you listen, I've been trying to edit out that I'm saying And he keeps saying it so now we just have to leave it but but you were you were a bigger kid and you were a nice and fun kid. So nobody ever picked on you for much of anything. Right? I mean, I think the only time that we were in a quote bullying situation was when you were in like fifth grade and a little kid was so trying to pick on you. And you he was like it was like poking the bear with a stick. Luckily, you didn't you didn't take the bait. But I think one of the reasons why nobody picked on you is because nobody picked on you anyway. But also, you were so upfront about it. Yeah, that there was what are they gonna pick on you about
how your pancreas doesn't work? What if What a nerd
Unknown Speaker 19:42
but you were always there first to tell people about it and to explain and I was also like, the most popular kid in my elementary school. So
there's that too modest to ah, am I wrong?
No, I remember explaining At least there was a time where we were in the gym, and I was running around giving everybody high fives. And they were all chanting my name.
Stacey Simms 20:08
Well, that was I don't want to burst your bubble. There's fifth grade. Well, yeah, but it was also like a jdrf event.
Unknown Speaker 20:13
Oh, that was that school?
Stacey Simms 20:15
Oh, really? Yes. It was gonna be like one of the beam team. No, that that was
that was beam team at school.
Unknown Speaker 20:20
frayed right. I'm saying it was a purpose. Yeah, but I'm okay.
Stacey Simms 20:25
But that's a perfect example of how a diabetes thing made you feel great. Yes. And it's hard because I think some kids don't embrace it naturally, which I understand everybody's personality is different. I don't understand it. Well, you will when you grow up. But like, you know, your sister has a completely different personality. She's very introverted. She would not have enjoyed that. And I think she wouldn't have had the same experience you did. So as I'm talking as you're listening, I'm not talking to Betty right now as you're listening. I think it's harder for kids who are Shire, and I don't have that kind of advice so much because Benny's not that way.
Unknown Speaker 20:57
Some of the best. Well, you think you're the
Stacey Simms 20:58
best and as I said, And modest rude, but I think it's okay if your kid isn't out there saying I'm a cyborg and yeah, diabetes and get well not you never said da da da da let's rephrase, yay, beam team and jdrf and all that kind of good stuff when you were younger. I think it's okay if that doesn't happen. But I think that can also the more you keep it into yourself, the harder it can be when other people ask about it, and I think that can kind of lend itself to some difficult situations. Let's put it that way.
The lesson from all this tell everyone you have diabetes so you can't get bullied.
Stacey Simms 21:31
Well, I think it helps to be upfront about it. But you know, it's it's not my lessons. Your lessons better also be a big dude. always have a smile on your face. And I hate that you're thinking I'm talking about when you were like six or seven years I was still chunky.
I was cute though.
Stacey Simms 21:49
Hey, let's talk for a second because you're bringing it up. Let's talk about your
weight loss lost 50 pounds since the summer 50
Stacey Simms 21:56
pounds which is bananas.
Turn on, keep going.
Stacey Simms 22:01
Okay, that's fine. But can you talk about how you've done it a little bit only because as your mother, I was really worried when you start it, our dog is going crazy. I was really worried when you started because between diabetes and just body image and eating disorders and all this stuff, I was really concerned, but you seem to have done it in a really great way.
I'm gonna be so honest, I've absolutely no idea like how to describe what I did. I ate when I was hungry, but just enough, and then I drink a lot of water and Gatorade.
Stacey Simms 22:27
I can also chime in on just a little bit of what I observed. Because I was, you know, you know, I was making sure you were eating, you know, I was worried.
Stacey Simms 22:34
um, you seem to really just cut out empty calorie stacking. We never had a lot of junk food in the house, but you know, no crackers or you know, or things like that. And you stopped eating dessert. Not, not all the time, right. You do have dessert sometimes. But you really stopped eating when you're on the computer. Yeah. Because I think our house helped to now we didn't move until the beginning of March so you were already losing weight. The reason I bring up the new house is because In the old house, the playroom where you had your computer and stuff is right next to the kitchen. Yeah. So obviously it's really easy to snack. Yeah, but you get a lot of willpower and you stop that. But then we moved here. You have been away. The playroom is upstairs and the farthest corner of the house which is, which is great, because we have to hear you screaming. So do I know. But when you play Xbox, you're so loud and I don't really hear you until the hall has this quiet, dude, just don't scream. No, you
don't understand. Screaming it's part of the enjoyment.
Stacey Simms 23:28
But the point is, you've you've been able to have a lot of willpower. And also it's helped that you are farther away, but you eat dinner. You know, you eat breakfast, you eat food. It's really been amazing to see I would never have said you had 50 pounds to lose. So, you know, to me, you look you look really thin. Are you okay? I mean,
he's kilo. 15 pounds to lose.
Stacey Simms 23:49
Yeah, well, we're gonna talk about that off the year. With wrestling. We'll see
17 actually. All right.
Stacey Simms 23:54
The idea here is to be safe and be smart and get where you want to go without the interoceptive Okay, all right, you know, I'm right. We're gonna talk about that off the air. But, you know, the other things that comes with weight loss is you know, you're using a lot less insulin to, which has been really interesting to say, but you're doing great. Okay, and you need some new clothes.
Just an entire new wardrobe. I mean, we can't go shopping because of the quarantine stuff. So it's been wild.
Stacey Simms 24:20
I'm not taking you shopping. Okay, this is an interesting question. Elaine says, When did he start total self care, and then separately waking to CGM alarm. I don't wake up to CGM alarms.
Okay, I woke up to my blood sugar.
Stacey Simms 24:33
Oh, I was gonna say I know that. I was gonna say it wasn't true because I know you treat overnight and stuff so you feel that you wake up to your body. Yeah, I
never once woke up to an alarm. I'm a deep sleeper. When
Stacey Simms 24:45
I don't know because I'm not in your face all the time. But it seems to me that I've seen you go low and I know you treat and then you go back up. So you're waiting on wake up to alarm you're waking up because your body is alright. I've never woken up to an alarm. I will as the mom We'll let you say that I'm going to slightly disagree all
tell me about what happens if you wake up and you're filled up. And I'm sweaty. And I'm like this does not feel right. And then I stumble out of bed and if there's low stuff in my room, I take it and if not, I go downstairs and get juice and sit down there until my blood sugar goes back up.
When the dog comes, visits me, Oh, that's nice. When the dog comes as it comes visits,
Stacey Simms 25:25
that's nice when the dog comes to visit. I said I said, to answer the question here, too, we still use Dexcom. Share. We got the Dexcom when you were nine. We started share two years later when it came out. But we spent the first seven years of diabetes with no CGM.
That was scary. wasn't scary how we did it.
Stacey Simms 25:44
Well, you really you think that was scary?
Unknown Speaker 25:46
No, you don't remember it? Yeah.
Stacey Simms 25:48
How did we do it? We did it and it was a lot of blood sugar checks. We'll do a show on that sometime. Or at least a discussion of like the olden days, but I'll tell you what, I never really remember being scared. Well, that's not true. There was one time when you were low and you would not come up. That's when I was scared. But I knew you were low. Oh, well, it happened at home and then you threw up and you were fine. You just need to throw up and then retreated. And you were great. I don't know what that was all about. Well, you're gonna say,
so I had a counselor at a CCT diabetes camp. Yeah, name, Chris. And the entire week his blood sugar was just like 60 I remember that. He was not like a big dude. Like he was a tiny scrawny little dude. And he ate so much food. And his blood sugar just didn't go up.
Stacey Simms 26:35
Now. I remember he telling me about that. It's crazy. Maybe he needed to throw up
there, but it was the entire week. It's crazy. Like I had never seen a person eat so much food. And his blood sugar just didn't go up.
Stacey Simms 26:48
But it didn't go down. Right? It just
it was just 60 it was like 60 to 65 the entire week.
Stacey Simms 26:55
Well, the thing I was getting to with CGM is that I used to check You overnight when you were very little. And then as you got a little older, we would only check you overnight if we'd had a weird day, like we just knew something was going on, or you know you were very active. But I also went to work at 330 in the morning, so I would check you at 3am. When I got up, it was kind of easy. That was I wouldn't in my head. That wasn't an overnight check, because I was getting up to go to work. But obviously it was an overnight check. So when you got to CGM, and now that we have share, you might not wake up to the alarms, but I do so I mean, with Control IQ. And with our living situation with you upstairs here. I think I've treated one overnight low. And it was a compression though, right? You were laying on your CGM and I came upstairs and just enrolled you over and went from there. But to answer Elaine's question for real is he hasn't started total self care. No, no. Well, I don't think it's appropriate. You're 15 years old, and you're wonderful, you're independent. I could send you away for a week with anybody and you'd be fine. But in terms of real true self care, we're saving that minute do that it can you do that? A Ken Coleman right. But we're saving self care really here at home until your senior year of high school to give you a year at least maybe. Well, that isn't always talking about that's nice that he thinks that was that really threw dead under the bus. Yeah, well, that's what I do. I were thinking senior year, you're only a freshman. You're finishing your freshman year here. So we're we're still working on it. But I think senior year is good. And yeah, you do total self care when you go to camp Coleman, which is your regular month long camp.
The stories I could tell about the nurses. Well, some interesting ones. There's
Stacey Simms 28:35
a medical staff there but not a diabetes staff. So
there's a couple that are very good, though. Yes, that's a story for another But no, she only has to stay for two weeks.
Stacey Simms 28:43
We love Karen. Okay, so the best
she's the only Karen I like
Stacey Simms 28:46
no that's me. Like how can my best friend grant was a Karen weird name. All right. What were the most helpful accommodations for us school asks Heidi, I'm going to be very interested in what you say here. Repeat. What were the most helpful accommodate for you at school,
What was her name Miss? Oh, Miss Hyman Simon?
Stacey Simms 29:05
Yeah. Okay, so Miss Iman was absolutely. I guess the school called her a floater. She was a teaching assistant, who in kindergarten would come in and help you know, she was like the our elementary school always had a teacher and a teacher's assistant for kindergarten, but in first grade they did not have that. Your first grade teacher though, who was a take charge and take care of business lady. Oh, Harrigan, Miss Harrigan? Yeah, she was like, we are not fooling around with this. We need more help. So she got permission to have this time and float in and out and do and help you with your blood sugar checks. And then by the end of first grade, there was another kid by the beginning of second grade, there were four kids in elementary school and Miss Hyman was like the diabetes lady. And she would just help. That's so nice that you remember that?
I remember. Like I was with her all the way to like third grade.
Stacey Simms 29:55
Yeah, well, she left the school it was in
first grade to third grade.
Stacey Simms 29:58
Yeah. And then you Didn't you really didn't need any of the diabetic nurse? Oh, Julie, who has diabetes? Yeah, she was on the islet cell thing, right? Yes. She had an islet cell transplant. She's been on the show before. So as you listen, yeah, she told all about her islet cell transplant. And yeah, she's a really interesting story. So we'll, I'll link that up in the show notes. You can go back and listen to that past episode. Like Kumbaya,
Unknown Speaker 30:21
like if I Oh, yeah.
Um, do you have merge? conflict? The merge?
Stacey Simms 30:26
I don't have any marks. Yeah, one of these days I have my book. The thing that's nice about my book,
Stacey Simms 30:33
Instagram, it's audio.
Um, but I would say for accommodations, we had a very, very light 504 plan. And our 504 plan revolved almost all about testing. Because in our school district, unlike many school districts, we actually had a written out diabetes management plan, and every child with diabetes whether you're on a pump or shots or whatever you would Have a de m MP diabetes medical management plan. And you had to fill that out. So that was kind of like your 504.
I have a question. Yes, of course, if like, let's say my 504 says I have to have my phone with me, right? Yes. And a teacher takes my phone.
Stacey Simms 31:13
Yes. What do you do? That's a great question. If you felt that your health is at immediate risk, I would excuse yourself and go to the administration office and call me. If you felt your test was at risk. I would take the test. And then upon completion, I would like does that teacher get in trouble? Like what happens? Oh, it depends on the school district. If it was a mistake, it depends on the parent. Okay, so let's say that happened to you. And you were like, I took the test anyway. Okay, and you got a 95 on the test. Okay. I would go into school. And I would say or call the school and I would say, Hey, I understand there's a misunderstanding. Let's talk about it. Let's talk through it. And I would escalate if she was like, if she was great and said, Oh, my God, I'm so sorry. I didn't realize that's one thing. She says. That's outrageous. You couldn't possibly then I escalate, right? We go to the next person, we go to the next person and this person, let's say you take the test, you get to 65. I would lobby for that score to be thrown out. And you could retake the test. We've never had to do that. Because everybody's good. Yeah, everybody's been very cooperative and accommodating. But I'm all for fighting for you. But I wouldn't start out with a fight. Yeah, I would start out with a Hey, what happened? and go from there. But I don't think it's fair to make you totally advocate for yourself.
I would hope you would. I mean, oh, yeah. No, if I knew something was wrong, I would leave the class I'd be like, ministration something's wrong.
Unknown Speaker 32:37
Right. me right.
Stacey Simms 32:38
Like if your blood sugar was high, and they wouldn't let you see the nerve. Here's a really good example. And let's not name the teacher. You used to have migraines. Oh my God, when you were growing up.
Unknown Speaker 32:50
Your teacher didn't believe you.
Even after I threw up right in front of her.
Stacey Simms 32:53
Well, I think that was that was the action I was gonna say. What do you think you did that made her listen a little throw up right in front of her threw up in the classroom. I'm right in front of her all over the books. Now, if you were not in the what was that fourth grade? Okay, so let's say you were a freshman in high school, you probably would have left a classroom and vomited in the bathroom and then gone to the nurse. But because you were in fourth grade, and you were probably really nervous to leave, or, you know, there's all these things going on. It's really unfortunate that had to happen. But, you know, it's good to talk about, but back to accommodations, because we have the diabetes medical management plan, which spells out how diabetes was treated, and also said things like, you know, you have to leave the classroom to the bathroom, you're not limited to water, how much water you can drink, all that kind of stuff that was laid out our school district, which is a huge one in the Charlotte area is wonderful about that. So our 504 was all about how he's going to take tests. And we started it in. I had a 504 plan, but we never really used it because of the testing situations. Don't ever use it. Well. Yes, you do. It didn't come into play until third grade finals, right into grade. So in third grade, we started kind of testing at different ways. Big to take tests, the beginning of grade tests. So we decided for For Benny, he wouldn't do anything differently except he's allowed to have his phone with him. He doesn't need his phone right now, really, because your pump has everything on it. But you still take it in, I assume you lay it on the desk at the front of the classroom, sometimes you'll keep it your pocket. Well, so
normal testing, like not finals and stuff. It's just in my pocket. But teachers are like, just don't cheat, but during and agree, like finals and stuff when like they like go and collect your phone. I just like, it depends on who's there. Sometimes it's just don't cheat, or sometimes I'll keep it at the front of the class. And if it buzzes, I'll tell you.
Stacey Simms 34:31
Yeah, I think for us, we're gonna find out this year about accommodations for the AC T and the SA T, and things like that. And that'll be an interesting thing to go through as well. If your child is diagnosed younger, this is really easy. Because you you figure it out as they get older. Right. And by the time they're in middle school, I think High School is when testing really starts counting. But I mean, it counts in middle school too. But by the time they're old enough to take these tests that really matter. Yeah, you're understanding what they need because some kids need a lot more money. than you do, your blood sugar doesn't skyrocket because of test stress. We have friends who they walk into their final exam and their blood sugar goes to 300. Really? Yeah. But I think right in terms of most important accommodation, I would say it's actually on the parents side. And that is being able to work with the school as a team, being able to go into those meetings and say, I want to be I want to work as a team. I want to see how this goes like let's work together, which sounds very Kumbaya and woowoo. But it really helps it helps me rather than going in and saying, I'm gonna fight for my kids rights. Like there are a lot of situations, unfortunately, where you do have to fight. But you know, going in without guns blazing is very dark principles.
Stacey Simms 35:38
Well, your elementary school principal was he loved you.
I was his favorite. I don't know he was he didn't name favorites, but I was
Stacey Simms 35:44
he was fascinated with diabetes. He was really interesting. I mean, he wasn't he wasn't fascinated, in a weird way. But he just he admired the kids with type one. He really did. I was his favorite. Well.
He didn't say
Stacey Simms 35:56
he really admired what you guys were doing. It was interesting. School. Yes, your school counselor was great. He was a good guy. He and he did our 504 plans, we would meet with him to go to the fiber floors and he was he was very nice.
He was the guy that like if you got to go into his office, you were one of the cool kids.
Stacey Simms 36:15
We were very lucky to have a great Elementary School. Okay, and has been principal
had a lifted red Jeep. Like how much cooler does it get than that? I guess cool was an elementary school. Principal is the eye of the beholder.
Stacey Simms 36:29
has been he had burnout. If So when did he have it? How long did it last? And how did he deal with it?
Stacey Simms 36:34
Yes. Ever? Yes. So explain.
I don't want to do diabetes. Too much work.
Unknown Speaker 36:39
You get that often.
Yes. But how do you deal with it? video games?
Unknown Speaker 36:44
Do you just change the subject? Yeah.
I find that most of the time I just go Oh, well. It is what it is.
Stacey Simms 36:50
Well, I find it interesting cuz I wouldn't have said you've reached a lot of burnout.
Like I have my own opinions about that. I have been able to shoulder shrug a lot of things
Stacey Simms 36:59
like kind of compartmentalize. I don't know what that means, like, put it in the back of your brain and move on with your life. Yeah. So what helps you should play video games? Is that also like, just you're with your friends? Yeah. Do you ever talk to people from Camp or no? Well, you mentioned Justin and Jeffrey early on, is it? Like knowing that they're there? You'd have to call them?
I mean, I guess but like, I've never been the kid that's like, and life is terrible. I gotta just like, yeah, it is what it is.
Stacey Simms 37:27
All right, I have two examples that I want to bring up and see how you react. And we don't have to share these two examples. The first is when you were about 10. And you want them to take a pump break. Do you remember that at all? Yeah. What was going on? Like, can you share anything about that?
I remember talking to Michael. And like, the pens just seemed a lot easier. But then I was like, wait, there's too much math.
Stacey Simms 37:49
Well, your pump requested about three days, but that's when you started because
I was like, wait, there's too much math.
Stacey Simms 37:52
Yeah. And that's when you started giving yourself your own injections. Because you had only used us we don't use syringes. Remember before that, I don't
ya Yeah, I remember when I was like four.
Stacey Simms 38:04
And so to switch to an insulin pen seems really scary to you, but you did it, which was awesome. And it's helped us a lot since then there's too much math. Yeah. And there's also too many shots because you'd eat breakfast, then you'd get in the car and want an apple. You'd be like, what I do another shot. But then the other time, I wouldn't call it burnout. But we had I actually wrote about this in the in the book, you had a really bad night, you had a night where everything hurt, your inset hurt your Dexcom hurt. I think you had to do the same night. You're doing both and it was tough. You were really upset about it. And those things happen. I think it's important to acknowledge even for a happy kid like us, that was a terrible night.
But tomorrow morning, I was fine. The next morning, tomorrow. Ya know why?
Stacey Simms 38:47
But really can do mine. You don't have to share about it. But can you talk a little bit about?
I remember one time, like my incident didn't work like three times and then my Dexcom didn't work like twice. I gave up and I was like, I'll do it. The morning
Stacey Simms 39:02
that was the week that you actually met Rodney, the pan guy who we already mentioned him he was the first question dangling. I love Rodney and, and Colt Scott, the American Ninja Warrior dude. So we met them a couple nights later because we were out to dinner and you didn't talk about the night that you were so upset. But I think don't
remember what we talked about. I remember is Ronnie eating a lot. And I was. It was really fun.
Didn't barbecue there too.
Yeah. It was a fun night.
Stacey Simms 39:29
Yeah, but I think that just helps to kind of breathe the same air as other people with diabetes. Even though you've had a crummy night, it helps to be with your people because your mommy is helpful, but only to a certain extent. All right, I don't know that you can answer this question, but this is one of the last ones. Okay. How did you realize like, when did you realize you had diabetes? And how did you feel about it? You know, I can't answer that. I just I've just always had it. This mom says I keep wondering for those who are diagnosed early like my daughter with the healthiest way of thinking about it is and how I can help with that.
It's life. What are you going to do?
Stacey Simms 40:00
Well, I think a non 15 year old person answering that question a parent might say, I think that there are ways of explaining it that change, because there's different age appropriate ways of talking about it. When Ben he was teeny tiny right after he was diagnosed, my parents got him a Curious George doll, who we'd love Curious George, and he's just not better. Right. And we thought that he would do like imaginative play, right demo demonstrative play right here. I'm gonna give he did not do that with the curious church, but he did. Oh, yeah. And so Elmo got shots. Elmo had juice boxes, Mo got insets
mo love juice boxes,
Stacey Simms 40:35
right Elmo love juice boxes. And that's something that helps kids process that they have diabetes when they're very young. And as he got older, we would read stories, we would tell other people, we did a presentation for your class every year that changed as you got older. And then we started talking about age appropriate stuff. So when you're talking about like independence, what has to be done? When you're talking about driving what has to be done right Later, we'll talk about about when you're living by yourself, right? Well think about it as a parent, how much?
It's fine. You guys have no responsibilities,
Stacey Simms 41:08
I'm going to touch on driving just a little, because somebody did ask about that. You're doing really well with driving. But you
want to talk about what you have to do before you drive. I checked my Dexcom.
Stacey Simms 41:18
And right, that's it, you check your blood sugar. If you're below 80, you can't drive. That's our simple rule. And we have to make sure there's stuff in the car. And I'll be honest with you, I'm going to make sure that you have low stuff in your car for the first year or two because it's just like anything else. You have to learn. You have to get used to it, they'll be independent. So with driving that's, that's I'm terrified, but not really because of diabetes, but you're pretty good driver,
Stacey Simms 41:40
and modest to I am honest,
like I'm really modest. All right, and then
Stacey Simms 41:44
do you do any diabetes goals in the next couple of years like are there certain now
Unknown Speaker 42:00
You're listening to diabetes connections with Stacey Sims.
Stacey Simms 42:05
See, Why weren't you about how we are to each other, I can't believe I said, I hate you there at the end. Oh, although I gotta say, Oh my goodness, I am going to play a little bit more at the end of the show the very end so you can understand what I was putting up with for a lot of that interview and some of the stuff that we had to take out, but I hope some of that helped you. I'm also going to link up a few of our previous interviews with Benny, I've talked to him a couple of times on the show. And it's interesting. Not only is his voice changed a lot as you can imagine, but just to hear how things have changed. I'll do that at the episode homepage. There is always a transcription. I have no idea what this transcriptions gonna look like the first time I run it through the computer. That's gonna be fun, but we'll put that there as well. And update. Interestingly, after this interview, he really did agree to stop taking the true Seba. So for the first time in almost two years, we started the trustee but in August of 2018, he is not taking long acting With his pump it because his insulin needs have gone down so much, obviously with the weight loss, but also with puberty. He loves what I talked about that, and I'll keep you posted on how that's going. I'll tell you what, so far what he's not eating. It is amazingly steady just like it has him with Control IQ. It's maybe on average, 10 to 15 points lower. So if he was running at like 110, he's now running at 85, that sort of thing, because just that little bit more control of the algorithm is really helping, at least in the short run. But for the last two days, I swear that kid has forgotten to bolus for every single meal, everything he eats. I don't know what's going on. But I'm trying not to make a big deal about it. We're just gonna move on. We're just gonna remind we're not gonna nag. I'm sure he would say something different. All right. Well, anyway, I'll keep you posted on that, but he really is doing great. And I like that he comes on and talks about diabetes, even if it may not be what I want to hear or I want you to hear something. Tell me something good in just a moment, but first Diabetes Connections is brought to you by Dexcom when Benny was very little, and in the bathtub or at the pool, I always noticed his fingertips. I mean, you know exactly what I mean, right? When you've got diabetes and you're checking and checking and checking and poking and poking, when your fingertips get wet, somebody in the community called it Franken fingers. They were just full of little pinprick holes that you could really, really see. And you know, he is 15 I don't see his hands too much. Although I did peek when he was looking at the microphone and hanging out in the studio here, studio. Well, it is a studio, it's my office. I noticed and his endo looks at them every single time we go in that they are just normal. They are not those Franken fingers anymore. I mean, we've been using Dexcom for almost six and a half years now. And with every new iteration, we've done fewer and fewer finger sticks. The G six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about doing 10 finger sticks a day, which is what we did in the past. I mean that was pretty every day makes me so glad that the Dexcom has helped us come so far. It's An incredible tool. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions, learn more, go to Diabetes connections.com and click on the Dexcom logo.
And tell me something good this week, a quick book update, not my book, but some other terrific books in the diabetes community. And these are books that have been out for a while that are highly recommended. And we all pass them around to each other, but they're getting updates. And I think it's really important because Gosh, think about how much has changed just in the last couple of years. So the first one I want to tell you about is understanding diabetes. This is better known as The Pink Panther book. I still have no idea why the Pink Panther is involved in this. And it's the actual Pink Panther. I mean, they had to have gotten a trademark but if you've seen this book, you know what I'm thinking. This was the first thing I thought when they handed it to me in the hospital. Why is the Pink Panther affiliated here, but that's a mystery for another time, I suppose. Anyway, they're on the 13th edition which you Come get us a discount because the 14th edition is coming out this summer. This is put on by the children's diabetes foundation. I will link this up in the show notes so that you can order a new book, let your endo know as well, if they're interested and it does come in Spanish. It is also available in an ebook form in a Kindle, so you can get them in lots of different ways. The Pink Panther books, the mystery continues though as to why that character How do they get the trademark anyway? All right, the next book is think like a pancreas, which is a must have, in my opinion, A Practical Guide to managing diabetes with insulin. Gary doesn't need my seal of approval here he is already the number one new release in nutrition and medical health sciences on Amazon. But I think this is really important because I recommend this book all the time. And this is the newest update for it. It's a paperback and an E textbook. And as the description says the all in one comprehensive resource for the millions of people living with diabetes who use insulin. The updates here include, as you would expect new medications, new technologies, injection devices, dietary recommendations. We've had Gary on the show many times he describes himself as a human guinea pig, because he lives with type one and he tries all of these devices, but he also talks about the science behind them in ways that I think is really clear. If you've listened to my interviews with Gary, you know, I generally feel kind of like a goofball. When I talk to him, he's very calming as well. If you haven't gotten this book before, highly recommended. If you have and you're looking for the update, probably the textbook is your best bet and I will link that up in the show notes as well. And finally, and tell me something good, lots of graduations to celebrate. Of course they're not the usual graduations people got very creative with how to celebrate their kids this year, but I know a lot of you were hoping for bigger ceremonies and more tradition. I want to take a moment to highlight just one of the many valedictorians that were spotlighted in some of these Facebook groups that I saw Jeremy bright was valedictorian and thank you so much to his parents for letting me share his story. Jeremy was diagnosed with type one at age 14 and he has a scholarship to Florida Polytechnic University to study computer science this fall. And once Jeremy's parents posted about him in this Facebook group, several other people chimed in with my tea Wendy is a valedictorian as well and you know, they kind of went and listed a few other kids didn't get permission to share their names and or their stories and and that's okay, but I think it's great that so many kids are at least getting the credit that they're due for working so hard through high school I don't know about you guys but it seems sometimes that for these kids I know the workload on my daughter High School was almost worse than college maybe it's just the pressure of you know, they have to do so well and I tried to eat that off for my daughter, but man it is hard when all the high schools are telling them you know, take this class get this college credit all these tests AC t sad. Oh, all right, just a little bit of editorial on my part and we shall see Right with all the wackiness that's happening this year with some colleges not you know, counting the standardized tests, we'll see what happens going forward. But anyway, congratulations to these great kids. If you have a Tell me something good story, please let me know you can reach out Stacy at Diabetes connections.com post in the Facebook group, you know, send a carrier pigeon, whatever it takes. I would love to feature your child or you in our Tell me something good segment.
Before I let you go, it's worth noting that we are right at the five year anniversary of the podcast I had Episode 300. A couple weeks ago, I made a bigger deal about that. The five year milestone is something I'm sure I'll mark on social media and talk about a little bit but I'm bringing it up here because well first of all, I can't believe it's been five years. I can't believe that I'm still doing this. I didn't have a timeline in mind when I started the podcast but I don't think I thought five years later I'd still be doing it and loving it as much as I do and it would still be growing but I bring it up because If you're listening to this point in the show, then you are a true listener. And I appreciate that. And I would urge you to please join the Facebook group Diabetes Connections, the group, I'm going to be doing some polling in the next couple of weeks. I'm not sure what we're going to do with the podcast in 2021. And I know it's a little bit early to start thinking about it. But I plan for the next year. I mean, in terms of sponsors, let's be frank, I usually have all that sewn up by August or September. And I don't want to be in a situation where I decide to make some changes. And then I'm scrambling at the end of the year. So I'm going to be asking questions like you know, frequency length, what do you want to hear? I think after five years, it's time to take a tough look at this like a hard look at it and decide what do we really want to do? Where are we going with this right? And if it stays the same, fantastic. I love doing it. But if there's something that you would prefer to hear, you know, maybe it's all technology news, maybe we go once every two weeks, but we only do news updates, that sort of thing. Maybe you really like the personal stories and we stay with that we do a mix. Maybe we make up Longer show a shorter show, you know, there's lots of options. But I want to hear from you. So please watch for surveys over the next couple of weeks. But you got to be in that group. I'm not going to make these public. I don't want people who don't listen weighing in. I mean, come on. And I really can't thank you enough, five years later, to have as much fun as I'm having and to keep doing this and hearing from people who enjoy it. That's the best. Thank you as always, to my editor john Buchanan's from audio editing solutions for making sense of this week's interview and everything else that he does. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Unknown Speaker 51:41
Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged
Stacey Simms 52:04
You can you can take that to your room when we are done.
Unknown Speaker 52:09
Unknown Speaker 52:11
No, take it with you Why? And I
Stacey Simms 52:13
have a place to put it or leave it over there because I'm going to throw it away. If I well why would I keep it I take that two places with me like here. Let me interview with a man with a microphone that's been inside my son's mouth. I think you would love it especially in this day and age.
Transcribed by https://otter.ai
Dr. Nat Strand is an anesthesiologist who lives with type 1 and a mom of two young children. She just contributed to a paper all about pain management guidelines in this difficult time, when many people can’t see their doctors to face to face. You also may know her as the winner The Amazing Race in 2010. Of course we also talk about having T1D and that crazy travel show!
In Tell Me Something Good: virtual events, fire fighters and a lego master
Have a diabetes product or something to promote to the community? Check out Stacey's new Book to Clinic program. She's looking for sponsors - this program fits just about any budget.
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 0:25
This week, Dr. Natalie Strand is an anesthesiologist who was diagnosed with type one as a teen. And she says people who live with chronic pain and people who live with diabetes have a lot in common.
Dr. Nat Strand 0:39
and we may think the person who lives with it is thinking about all day long with every activity you know before they go to bed when they wake up in the morning, but the people around them even loved ones, you know and household. kind of forget because you look healthy.
Stacey Simms 0:53
Dr. Strand just contributed to a paper all about pain management guidelines in this difficult time when many people Can't see their doctors face to face. You may also know her as the winner of The Amazing Race in 2010. Of course, we talked about having type one and that crazy travel Show. I'm a huge fan By the way.
In Tell me something good: virtual events, firefighters and a Lego master. 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 know Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. And I am so excited to finally talk to Nat Strand. I can't believe that we haven't crossed paths before. I'm a huge fan of the amazing races. I mentioned I started watching it in 2001 when I was pregnant with my daughter, and I actually remember the commercials when it was like coming soon. And then of course September 11 happened and how are they going to be able to do this they thought the show might not have a second Season. So, gosh, that was such a long time ago. But it is amazing to see that even with COVID-19, which stopped the show again, they're going to be continuing that in the future.
But that's neither here nor there. I mean, we're talking to Dr. Strand about pain management her life with type one. And of course, we'll talk about the amazing race as well, but she wanted with her partner and fellow doctor in 2010. So taking a look back, I want to bring you up to date before we get to the interview about something new that I just announced really a couple of days ago on social media, and that is my book to clinic program. Of course, the book is the world's worst diabetes mom. And one of the things that I have found really fascinating is that although I am obviously a lay person who wrote an advice book for parents of kids with Type One Diabetes, I've been really fascinated by two things. One is that adults with type one are buying and reading the book and then giving it to their parents to talk about, you know, their childhood if they were diagnosed as a kid or wants to learn Learn more about the parent perspective, which I thought was fascinating. But I'm also hearing from diabetes educators and endocrinologists who have told me and I know I sound surprised here and this is genuine. I'm not trying to make this silly. They have told me that they have learned things from the book. And you know, when you think about it, it really isn't a surprise, because it's the layperson perspective. These are things you do not learn in medical school, right? These are things you learn when you mess up diabetes, when you're at the beach, you're in the car. It's the middle of the night, you're macgyvering stuff together. This is stuff you've learned when you live with type one.
And to that end, a few clinics reached out and said, Can we have copies of the book to give away and so I started a new program, it is called book to clinic. Bottom line, I'm looking for sponsors to pay for these books, so we can get them to people who need them. It's very reasonable. It's a very easy system. I will put more in the show notes and there's a video that's on social media you can see the whole thing and how it works. big thank you to my first two sponsors because the books have already gone to clinic. Thanks to T one d 3d year, and Big thanks to frio so you know I really appreciate the faith that they have shown and if you have a product or a blog or another podcast and you're looking for some very reasonable advertising that is targeted to an audience that is looking for you, please let me know and you can reach out to Stacey at Diabetes connections.com. I’m really excited about it. It's one of those things that you just don't expect to happen. But you know what, we'll see where it goes.
Diabetes Connections is brought to you by Real Good Foods, and they have already new ice cream flavors. We love their ice cream and they're kind of hard to get right now. they've they've silted up a couple of flavors. But man they are so yummy. I cannot wait to try the mocha Java chip ice cream. I'm a huge fan of coffee and chocolate and their original flavors that we tried way back when beginning of March. I think we did that Facebook Live where Benny and I tried the ice creams. They were so delicious. We really liked them in chocolate chip, everybody in my household Loved the peanut butter chocolate chip ice cream or big peanut butter people. The new flavor sound amazing. I mentioned the mocha Java chip, the cake better ice cream. My kids love that. And something called super premium almond charcoal ice cream. That sounds amazing. So let me know what you think if you've sampled the new flavors, we haven't been able to try them yet, but I'm really excited and of course Real Good Foods has real good food. They have a whole line of high protein, low carb grain free gluten free. Good for a keto diet if that's your thing. Everything from cauliflower crust pizza to stuffed chicken and breakfast sandwiches, find out more Just go to Diabetes connections.com and click on the Real Good Foods logo.
If you've already heard of my guest this week, chances are you're a big fan of The Amazing Race TV show. Dr. Nat Strand won the whole thing in 2010, part of the first all female team to cross the finish line first, along with her friend and race partner, Dr. Cat Chang. Dr. Strand is also the first winner with diabetes and she might really think We'll be the only contestant to compete with type one. I started watching The Amazing Race. As I mentioned when I was pregnant with my daughter and I have been meaning to talk to that for a long time. I'm so thrilled we finally worked it out. She's an anesthesiologist and a pain medicine specialist working at the Mayo Clinic in Scottsdale, Arizona. Recently, she contributed to a paper on caring for patients with pain. During the COVID-19 pandemic. She was diagnosed with type one at age 12. So we have a lot to talk about. Here is my interview with Dr. Nat Strand.
Dr. Strand, thank you so much for joining me. I am excited to learn from you and to hear your story. I followed you for years on social media. So thanks for coming on.
Dr. Nat Strand 6:42
Oh, well, thank you so much for having me. It's an absolute pleasure,
Stacey Simms 6:45
so much to talk about. We will get to the stories and living with diabetes and your diagnosis story. I want to start out and just jump right in with what caught my eye recently, which is a study to what you contributed about caring for Patients with pain during this pandemic. I don't know that you can really share too much about the study. But I'm curious like, you know, your anesthesiologist, let me start with asking you what are you seeing right now? What's going on in your world,
Dr. Nat Strand 7:14
where I'm located in Phoenix, Arizona, we are thankfully not experiencing the surge that we thought we were going to have. So four to six weeks ago, there was a lot of work as far as preparing on a community level. All the hospitals governor mandates to increase capacity of hospital beds, things of that nature. So we were certainly preparing for a surge. But I think a lot of people in our community have made personal sacrifices with the social distancing and the stay at home. And I think that that has helped us flatten the curve, as I say, not quite bend the curve because we're still increasing cases here but flattened the curves. Right now. What I do is practice pain medicine, we largely transition to telemedicine to avoid face to face visits and allow patients to access health care. While they stayed safe at home, so predominantly in the last few weeks, I have been treating my patients with telemedicine.
Stacey Simms 8:08
And how does that work? Because I would imagine that pain management is already a very delicate balance. You know, we hear about, Oh, you don't want to take too much of this medication or you can get addicted. And then when people are concerned about not seeing their doctor face to face, you've got to be worried about well, are they even managing their pain? Or are they suffering? Can you share a little bit about how it's been going?
Unknown Speaker 8:27
You know, I think for the most part, it's been excellent. With two way real time, audio and visual, I think you can get a good sense of how patients are doing. And as far as managing medications, you know, certainly the opioid crisis was there before we call the pandemic that the word crisis is still there during the COVID pandemic. So, you know, it's not the answer isn't just to prescribe a bunch of opioids. Now, some people benefit from it, but a lot of people can do manage with other texts. Consider that the anti inflammatories, neuropathic pain medications, lifestyle alterations, weight loss therapy and even with you know, the social distancing and stay at home, there's a lot of physical therapy that you can do from home too. So I think this challenge in medicine is really forcing our hand taking advantage of telemedicine and taking advantage of remote care and certainly providing access without being face to face now we are now open for elective procedures in Arizona so we are able to keep patients face to face but for a period of time there we really were forced to jump on the telemedicine bandwagon, maybe a little sooner than most of us were prepared to do that. I've been very pleased with the ability to offer access to patients, especially patients who are at higher risk, whether that be due to health concerns or age or even for patients that have to travel long distances to see a physician. So I think easing the burden on those patients and their situations to allow a little bit lower barrier to entry. healthcare access has
Stacey Simms 10:01
pardon my ignorance on this question, but when I think of seeing a doctor for pain management, and fortunately, I haven't had to have a lot of that in my life. So again, I'm ignorant on this. I don't think of an anesthesiologist. Right as the person that I would see I think of you all in the operating room.
Dr. Nat Strand 10:18
You're not alone. You know, when you do a residency in anesthesiology, you basically spend three years after your internship focusing on ICU level care, operative care, regional anesthesia, select nerve boss, epidural catheters, those kinds of things. So you become an expert at acute pain management, both with medication bandwidth intervention, so there's a fellowship option afterwards. And one of those planners either you can go into ob anesthesia, you can go into cardiac anesthesia, you can go into intensive care, you can also go into interventional pain medicine, so you kind of utilize that and there's a small skill set you developed during the anesthesia residency to further hone that Then focus on mega spinal injections, radiofrequency ablation of the spine or large joints, implantation of spinal cord stimulators or implantable pain pumps. So, you know, it doesn't seem like a natural progression at first glance, definitely. But when we kind of think about what we do in the bar and how that can translate to an office setting for chronic pain patients who kind of come to the bridge to the specialty,
Stacey Simms 11:27
yeah, yeah, of course, that makes sense. So tell me about this study. Because this is all about caring for patients with pain during the pandemic, not necessarily patients with COVID-19. This is something that is more of a guide for physicians,
Dr. Nat Strand 11:42
who's our recommendation, we worked with the American Society of we China presenting medicine to put out recommendations and then we also the paper you're referencing with that International Paper with the European society, of regional anesthesia also, and we just kind of want a different side provides some guidance during this pandemic early on, know how to handle urgent procedures, semi urgent procedures, you know, what was the risk of using steroids? You know, what can we do to manage our patients that were on chronic opioid therapy. So they really was sort of a set of guidelines after discussion of a panel of international pain medicine experts.
Stacey Simms 12:22
It does seem that chronic pain as I read through a little bit of the study, you know, just the introduction, things like that. It seems like chronic pain is so debilitating, especially for older people. I know we're a diabetes podcast, we're going to talk about diabetes in just a moment.
Unknown Speaker 12:37
But is there
Stacey Simms 12:38
you know, any advice that you would give someone who is suffering who feels like I don't think there's something for me? I've had this pain for so long. I'm afraid of being addicted. You know, we hear all those stories. Any reassurance?
Dr. Nat Strand 12:48
Absolutely. And one thing I want to say, You reminded me we talked about the food diary podcast. I think we're a lot of similarities between living with chronic pain and dealing with diabetes. I mean, they're totally different disease states. But if you talk about an invisible disease, that the person who lives with it is thinking about all day long with every activity, you know, before they go to bed when they wake up in the morning, but the people around them even loved ones, you know, a thing household, kind of forget because you look healthy or you look okay, you know, so yeah, that experience of living with diabetes is very similar to the experience of living with chronic pain.
Stacey Simms 13:27
That's really interesting, especially and even to my question of people are almost afraid to speak out because they're afraid they won't be taken seriously, or they'll be blamed. I didn't even think about that.
Dr. Nat Strand 13:38
Yeah, I mean, and, you know, you don't want to be a complainer or you want to put on a happy face. You feel like it's not interesting to other people, because it's the same thing it was yesterday and so, you know, I think living with diabetes myself, I bring a lot of that to counseling people who live with chronic pain because I get it, you know, and a lot of times they feel really, you can tell they can feel like, Oh my God, that's the first time anybody's really related to me on that way, you know more than just diagnosing the underlying cause of their pain, but actually, what it means to them to live with a condition like that. So I think that actually me having my experience of living with diabetes helps me relate to patients who live with chronic pain.
Stacey Simms 14:16
So let's talk about type one. Let's talk about your experiences. You were diagnosed as a young teenager, really, pre teenage 12 to remember your diagnosis story.
Right back in just a moment and telling your story there, but first, diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop, and I was really impressed how much they get diabetes. It really does make sense their CEO, Jeff was diagnosed with type one as an adult. In fact, I just talked to him last week about something else. It's always so good to talk to him because he gets it. He knows what this is like. Right? 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. Their 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.com and click on the One Drop logo. Now back to Nat and I had asked her if she remembered her diagnosis story.
Dr. Nat Strand 15:34
Do I remember that summer being really annoying and my family's road trips I remember going up to Northern Arizona and having to stop use the restroom all the time and it's a short like two hour drive. So I do remember my parents saying we'll stop drinking so much. You know of course now we know that the opposite. And then I went to like a three day sleepaway camp and at camp I was getting some notoriety for how many cans of soda I was drinking, I was going to the vending machine. And I was drinking so much that point I'd like built a pyramid of all the cans. I think, obviously I was going into either some decay or you know, just hypoglycemic diarrhea. So, I came home, my dad is a radiologist, he started to suspect that I might have diabetes. And I think he brought home some like urine ketone strips or something and tested them. And I remember it was like black. So he actually took me into the hospital. And I remember him telling me I was going to the hospital. And I had this bag of gummy bears in my room. And I vividly remember looking at those gummy bears. And you know, in a typical kid, that was what I was sad about was like, Oh, I'm not going to believe me. There's I had no idea what the rest of the diagnosis meant. But at that time, you know, you were admitted. I think I stayed in the hospital for 10 or 12 days and learned how to give myself injections and carb counts and there you have it. That was kind of my guide. It was truly not traumatic in a way. I mean, I didn't have some big bad events that veiled the diagnosis. It was kind of suspicion. Then that was the summer before I went into middle school. So I got to carry a purse everywhere. So the diabetes supplies I thought that was pretty cool.
Stacey Simms 17:17
Did you know you wanted to go into a medical field when you were that age?
Dr. Nat Strand 17:20
No, I don't think so. I had dreams of being like an oceanographer or a National Geographic photographer, kind of more creative, worldly, growing, no roots type of careers. But it wasn't until later. I think I had an interest in medicine through diabetes and my you know, you get a lot of exposure to physicians and hospitals at a young age. But it wasn't until I was in college that I really solidified my desire to go into medicine.
Stacey Simms 17:46
And what made you choose anesthesiology? Do you remember having a process
Dr. Nat Strand 17:49
for that? Well, it's certainly you know, matters a lot about what rotations you get. And if you have a great attending on a certain rotation that makes you know just kind of lights it up for you and that kind It happened to me for anesthesiology, bad reputation as a third year medical student and I just had a series of phenomenal attending physician to let me you know, place IVs Let me place lines, I intubated patients, I was in on some bigger cases. And I remember at the time, which of course you you changed your mind on this as you get older, but at the time, I wanted to be, you know, really where the emergencies happened. I wanted to be, you know, a first responder I wanted to be someone went down and had an emergency, I wanted to be there to be part of it, you know, traumatic, and now that I'm older, I kind of like No, I'd like something with Office Hours. You know, nobody needs you in the morning. But at the time, I wanted to be right in the heart of the action and there's nowhere better for that than being you know, in an operating room every single day and you get to help people. That's often the most terrifying thing they've ever done. And you have just moments for them to establish trust with you. Even if it was pediatric cases or you know, even on babies, you know, a parent literally can do their baby. And then you take it down the hallway. And so there's this intense trust that needs to develop over a very short period of time. And I always felt like that was something I really helped sacred as that amount of trust that someone had any for their loved one or for themselves.
Stacey Simms 19:22
We have had to have, you know, anesthesiologists, we've had surgery, both of my children over the years, and I always in the consultations, or when they come in, I always say to the anesthesiologist, you are the most important person in this room. And I try to say it when the search is not around, but I don't care. Because to me, that's the one and I, you know, it is such a huge responsibility. And I have such respect almost all and when you said, you know, you take your child down the hallway, if you've been there like I have, you know, your heart is in your throat for the entire time, and it must be such intense, not only the training, but just the experiences that you go through. Do you all Good, this is kind of a personal question, do you will have a community? Do you help each other out? Do you think there's Okay, mental health among anesthesiologists, because that's gonna be so difficult. So that's a huge weight to bear.
Dr. Nat Strand 20:11
It's a huge weight to bear. And I think, you know, I don't want to pretend like I'm on the frontlines right now, because again, I do outpatient pain medicine for the majority of my practice, but especially some of the anesthesiologists that have been called to intensive care units, and that are on COVID airway teams. And some of my best friends from training are in hospitals that are saturated with cases and other states. And so I think that mental health is a huge issue, the amount of stress, the amount of burnout, the amount of anxiety, the amount of fear even about you know, PBE and that kind of thing, especially in the beginning, when some of the supply chains weren't, you know, as mature again, I'm not talking about my personal experience, but people at other hospitals. So, you know, I think in general, it's an issue and I think acutely, it's even a bigger issue. I do see resources. I think people do In the pandemic are very aware, I even read a story about a physician suicide in New York for an emergency medicine physician, you know, so people are aware, and I think there are resources available now, especially that are free for physicians. But in general, I think mental health is unfortunately still kind of has a stigma where in medicine, I think self care is often last care. You know, people go to work when they're sick. For the most part, people go to work when they're tired. People work long hours overnight, you know, into the next morning, so I think mental health kind of goes along with physical health and, you know, you just kind of do what needs to be done and the needs of the patient come first. And so for a lot of physicians and all specialties, I think self care, including mental health really is a challenge.
Stacey Simms 21:42
I have to ask well, I have an anesthesiologist who also has type one and I mentioned you know, my kids, one has type one and one does not have both had surgeries where they required hospitalization and anesthesia. Are there any best practices or any bits of advice that you can share with the diabetes community to help us make the hospital stays, you know, we're not talking about COVID-19, obviously, but you know more routine stuff. Is there anything that we can do or better prepare, so that when we go to the hospital, if it's an adult or child with type one, that we can kind of help the healthcare teams take better care of us.
Dr. Nat Strand 22:16
So I think one of the things is to try to speak with your anesthesiologist ahead of time if possible. So if you're having a plan surgery, and you know who the group is going to be, you may find people within that group that have a little bit more experience and interest in managing type one, that would be number one is to really see if you can identify someone, even if there's not someone who has specialized experience just so you can come up with a plan. I would definitely suggest having a plan with your endocrinologist written out that can be given to the anesthesiologists. You know, I'm thinking of when I've had surgery or when I you know, had my C sections with my kiddos. I think that having the endocrinologist involved so they can, you know, give their support and of course, the You're going to do what they're comfortable with and what they know how to do. And sometimes that's changing, you know, insulin pump to IV insulin. And you also have to balance that with if someone's not familiar with it, and they don't have trust in it, they have to administer the care that they have trusted. So there might be some education involved. Of course, it depends on you what the case is the length of the case, the intensity of the case, those kinds of things. So I think if you're able to, if it's a short case, if the anesthesiologist is comfortable with the plan, I would love to always keep my insulin pump on and my guests come on, but I do know that sometimes, that's just not possible and you have to switch to, you know, other types of influence. So it's kind of uncomfortable for everybody. But I think if you can communicate ahead of time and create a plan that's most comfortable for everybody involved. That's important. And of course, you know, whatever is going to keep anybody safe. You know, avoiding any hypoglycemia, avoiding any severe hyperglycemia. And of course, just getting you to the other side when you can take over management yourself again.
Stacey Simms 23:59
Yeah, what We did the last time but he had surgery because the first the first time he had surgery, he was teeny tiny, I think had been diagnosed for, I think he was seven or eight months in. So he was about he was still two. And he had no, he had no decks. And he did have an insulin pump when this was like 13 years ago. So everybody was all excited to see the pump. It was very interesting. But he did great. And then this last time, he needed surgery, he had knee surgery late last year, and they were amazing. But we decided that it would be easier for the anesthesiologist to just look at his Dexcom numbers on his pump, not his phone, because the pump you unlock 123 right, the tandem pump is super simple. We figured the phone could lose signal, the phone could be harder to unlock, you know, just he's got like an, you know, a six digit code, and why would I remote monitor from the waiting room? What the heck was I gonna do? You know, they would know, they would know I had faith. They were great, and it really worked out well. So it was a really positive experience. And interestingly in the 1213 years that had come by that hospital Steph was really well educated about pumps and CGM, which was a really pleasant surprise for us. So that was good.
Dr. Nat Strand 25:06
Yeah, that's awesome.
Stacey Simms 25:08
All right. So I think I'm not alone in that the way many of us were introduced to you was on national television was on The Amazing Race, which is, it is the best reality show. It's my favorite of all time. I started watching it. I looked this up the other day that I couldn't believe it. I started watching it in 2001, because I was pregnant with my daughter and I couldn't sleep. And I used to watch it all the time. And I adored it.
Unknown Speaker 25:31
And you guys
Unknown Speaker 25:32
Stacey Simms 25:34
I know a lot has been said a lot has been written over the years about this. What was that? Like? I mean, what do you most remember about it?
Dr. Nat Strand 25:41
Yeah, that was 10 years ago now it's really crazy. But you know, there's there's the experience of doing amazing race of traveling around the world was nothing. I mean, you have a backpack but you know, you're going to the Arctic Circle, you know, you're going to go to sub Saharan Africa, you know, you're going to go we we didn't know exactly where we're going. Go back, watch the show myself enough time to know I'd be really cold, really hot, really dirty. But you have a backpack, you have no money, you have no maps, you have no cell phone, you have nothing. And so just being stripped down to sort of your just immediate resources to figure things out like that, because that was as interesting as it was to see the world. I mean, I had never been so stripped down of things I had access to, you know, being a study or I would have references for everything I kind of just get thrown into the world and open a clue and say, make your way to Stonehenge, you know what I mean? It's not like you get direction. So it was while that I did it with one of my very best friends, who's another anesthesiologist, Dr. Catching and we we had a blast. We went around the entire globe and I think it took us 21 days total. And then I came home and slept for like six. And after that, you know, the show starts airing in the fall and it airs. I think it aired from September to December or did at the time. So what sticking it was a whole nother like phase two.
Unknown Speaker 27:03
Oh yeah, with all the
Dr. Nat Strand 27:04
editing and the production that they do to their production, what the other teams were doing, you know, you see a lot of backstory or parallel stories that you didn't see at the time, right? Because you were just with your team, so very interesting to watch it after having lived it. And then I think phase three of it is getting to be like a C list celebrity for a year or two, which was also very weird. So there's like three phases of The Amazing Race that totally kind of changed my life. But overall, I was so positive, I have nothing but fond memories of doing it and the people that I met and, and I also remember thinking the world is a lot safer and friendlier than I would have thought, you know, if you just drop off to Bangladesh for 48 hours, with no plans, you know, people just kind of help and you and you're frenetic and you're tired and you're racing and you run up to strangers and you asked them questions really quick and, you know, now I would never go to Bangladesh for the weekend. You know what I mean? Like work to go somewhere for a weekend. But it was worth it, you know, you You definitely got to see things and get a taste of it. So afterwards I tried to tell myself, you know, even if you don't have a huge chunk of time to go somewhere still go, if you can, and, you know, to see the world and everybody was friendly, I don't think I had one time where I felt like somebody that's, you know, rude or aggressive or unwelcoming. And I think that was a very wonderful experience too. Because sometimes I think we can kind of become afraid of going places or being with other cultures and being there in person in so many different cultures. And having everybody be so warm was was phenomenal.
Stacey Simms 28:34
Did you learn anything at that time about managing diabetes? Because you you I mean, I know you're stripped down, but you had your diabetes supplies, but I saw the show you're testing while you're driving. I mean, you know, to some extent, you don't have all the stuff you know, you don't you're not sleeping, right, you're not eating right. And I'm just curious, I think sometimes with my son, he'll go and forget something and muddle through when he learns from that. And even though we have all this wonderful technology, he kind of has learned that he can make it work. You can always MacGyver something. I'm curious if you had that experience.
Dr. Nat Strand 29:03
That's the word I was just thinking. I mean, any type one becomes, you know, kind of a MacGyver where you're learning how to, if you need to draw and slip out of an old reservoir for a new wine or you're learning how to reuse parts of an infusion set because one part ripped off if you don't have enough to replace the whole thing, or you're learning how to keep insulin cold or you're learning how to package things. They don't take as much room by taking them out of their packaging and putting them in a Ziploc, you know, all together, I think, you know, I remember even the test strips, you know, opening the test strip bottles and filling one bottle with two bottles worth of strips just to save space. So, you know, you kind of by force have to get very creative with faith and efficiency and also problem solving. So yeah, I learned a lot about traveling with diabetes. And you know, one of the things I did was I typed out a letter that said I have type 1 diabetes. In case of emergency please help me get sugar or please You know, I'm getting 200,000 to a hospital and I printed that out in several languages. So, you know, if I found myself in Russia, for example, and didn't know how to say what I needed, you know, I would have that kind of to give. So I think, you know, just learning how to prepare, you know, anticipate what problems you might have, or where you're going, and then, you know, trying to bring the selections with you as possible. That was definitely a skill set that was honed,
Stacey Simms 30:24
that's a great point. We were in Israel A while back. And, you know, we were on a guided tour, and everyone spoke English. But at one point, a guy wanted to take my son's medical bag to examine it, and he didn't speak English and then he figured out what was going on your tour guide kind of spoke to him and he was like, Oh, you know, kind of funny exasperated, like, come on, make this simple for me. And he wrote out this is a medical bag in Hebrew, and attached it to our bag. He was like, here Now you won't have any other problems like what's wrong with you people? Why couldn't you just do that to me? He was very funny back to us, like, you know, nicely exasperated with us, but I think in the future, that's Something that is just very helpful. You know, this is a medical bagger. I have type one diabetes in different languages. That's great advice. So I mentioned you have two children. Now you have I was gonna say toddlers, but you have preschoolers, right, five and four years old. You mentioned c sections. I'm not going to get all personal about type one pregnancies and that sort of thing. But when you were diagnosed at 12, I doubt you were thinking about children at the time. But you know, as you were getting older with the diabetes diagnosis, did you think about children? Was this something that you thought might be difficult or not possible with type one, or was it always in the plan?
Dr. Nat Strand 31:32
You know, I actually, again, sitting with my adventurous plan for life. I wasn't one of those girls that really thought I would have kids. I never really thought about being a mom and stuff like that. I kind of was more thinking about how I was gonna travel the world. And so, I mean, we had all seen Steel Magnolias. And so I think, you know, I had this awareness but at the time, you know, I think it was more of an awareness that that movie was wrong. I think I thought it would be fine. If I had wanted Kids. And then once I got a little older, I met my husband, we got married and I started, my switch flipped and I was like, I need children. And then I was like, Okay, I started getting into the details of, you know, diabetes and what the control needed to be and what the risks really were. And, you know, that I think was overwhelming. I think, you know, type one pregnancies, it's definitely a full time job. It's not regular diabetes management is like, very, very intensive diabetes management. So I knew that people would type one could have kids, I just didn't know if I could do what it would take to be that strict for that long. You know, so I think I, I pleasantly surprised myself that I could, you know, I think when the stakes are there, you do your best. But you know, I think there are different personalities, obviously, that have type one and my brother also has type one, he was diagnosed in his 30s and he's very mathematical. He's got an engineering mind and I think Not that anybody is well suited for diabetes, but if someone was to be well suited personality wise, he is, you know, he is regimented. He charts everything. He stacks his thing. You know, he's like that, and I'm the opposite. I became like him when I was pregnant.
Stacey Simms 33:14
So speaking of your kids, though, you you know, you've said you've been doing mostly at home consoles for your work. I assume that for the last couple of weeks, at least you've been home with your kids, maybe more than usual. How's that going?
Dr. Nat Strand 33:28
Well, you know, I think that everybody will look back on this time with different different experiences. Some people are bored and they've organized every room in their house and they make all these new recipes and I will look back on this time and remember what I had a three to five year old, who didn't have anywhere to go and any preschool or any day until my house apart all day long every day. My couch cushions haven't stayed in place for more than 20 minutes of full time. I mean, it's just crazy, but it's gonna be exhausting. I mean, they're like feral animal. But it's been cool to see them develop their relationship. You know, they're they're playing together from sunup to sundown. They're imagining things. They're making no jungle. So it's been nice to see them spend some time together, but certainly be at home with two young kids and nowhere to go. That's not for the faint of heart.
Stacey Simms 34:26
I salute you. Before I let you go. I know as you've said, you you're not in the ICU right now you're, you know, you're not seeing patients with COVID-19. But as a person with type one, I assume you're trying to stay on top of the medical literature and, you know, seeing what this may mean for people with type one who who get it who catch it who are at risk. Can you talk a little bit just either you know, your thoughts for yourself advice for the community? I'm just curious what's going through your mind on
Unknown Speaker 34:52
this these days?
Dr. Nat Strand 34:54
Well, you know, when they when it first kind of came out, I was reading a lot about what had happened in China. And also in Italy. And when I thought it was I kind of assumed it was type two diabetes, you know, because we were seeing a lot of age related and comorbidities. But you know, we've now seen with position statements from like the a DA and the jdrf, you know that they're not really differentiating type one and type two. So, you know, I know for me that my risk of catching this is not hired because of the diabetes, but my risk of a more negative outcome definitely is higher because I live with diabetes. So, you know, the way I look at that is I'm doing all you know, the recommended social distancing, masking thing at home, those kinds of things. And at the same time, I'm using this as an opportunity to really focus on all other aspects of wellness. You know, I'm kind of re engaging to bring my diabetes control into a tighter range because I know that's helpful. Now, as far as like rest, nutrition, exercise, all of those things are sort of, you know, you can think of it as like prehab instead of rehab, you know, what you can do before you deal with something to make you as resilient as possible. Physically. So I would just say, we know our risk of getting it's not higher, but our risk of complications if we get it is higher. And that's something that I think we should not let us talk on a topic from a place of fear, but rather from a place of preparation, and using that knowledge to just, you know, get our diabetes under the best control possible. Whether that means, you know, changing to a pump, or getting a CGM, or just re engaging with your endocrinologist or CDE. And then I think making sure you consider all other aspects of wellness to this to make you more resilient, which is, you know, nutrition, rest, stress management and exercise. So, I think we can use this knowledge to just put ourselves in the best position possible. A great defensive is really the best offense in this case.
Stacey Simms 36:42
Well, thank you so much for talking to me for sharing your story. And for just giving us a little bit of an insight into the medical community these days. I really appreciate it.
Dr. Nat Strand 36:53
Oh, and thank you so much for having me. I mean, like you said, I followed you on social media for so many years, and it's just an honor to be included on your project. Cast and thanks for everything that you do for our community. We all appreciate it very, very much.
Unknown Speaker 37:10
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 37:16
That was so nice of her to say that at the end, it's funny, isn't it? The diabetes community, you know, we all kind of know each other from social media, or, you know, we've maybe we've met at a conference, but there's a lot of mutual admiration out there. It's always nice when people say that, but you know, as you listen, it makes me think if for some reason you feel like you're not really a part of this community, you know, maybe you listen or you're lurking in the group, and you've never reached out you're wondering if you know, what's it like, it's great. definitely reach out, definitely jump in. I mean, if you if you're fine, and you just want to listen, that's awesome. But we're doing a lot of really fun stuff in the Facebook group with zoom calls and surveys, and I'd really love to see you there and I really want you to know as you listen that your voice is really important too. So I'll link up more about Dr. Strand and her study and other information that we talked about in the show notes there's also always a transcript there at Diabetes connections.com And up next is tell me something good which is all from the Facebook group this week love it. But first diabetes Connections is brought to you by Dexcom. Now we have been using the Dexcom g six I looked this up it is two years now. We did a goofball video two years ago a little bit over Actually, it was the night that Avengers Infinity War came out and that's the night that we slept on the G six for the first time and we did a facebook live in for Benny wanted to do it but he was also really reluctant because he wasn't sure if it would hurt. So I will link up that video but I will tell you when I looked it up where to start because it's like an agonizing 10 minutes before he does it. But you know, the Dexcom g six FDA permitted for no finger six for calibration and diabetes treatment decisions. You do that to our warm up, the number just pops up. And after so many years of the previous dex comes we had to calibrate a couple of times a day you know you wouldn't get any blood sugar readings till you did so. It's amazing. We have been using the Dexcom for almost seven years now and it just keeps getting better. The G six has longer sensor were now 10 days and the new sensor applicator is really easy to use. You'll see on the video he was shocked, you know no pain. Of course we still love the alerts and alarms that we can set how we want. If your glucose alerts and readings from the G six do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
Tell me something good this week a bunch of great I'll call them little stories from our Facebook group. Last week I talked with these big athletic accomplishments, right, the Appalachian Trail marathons, but this week was a little different and I think these are worth celebrating as well. James said AP exams were easy on accommodations this time simply allowing students with type one, double the time so they could test treat etc during what was already A weird testing cycle. That is good news. Samantha says we sent out birthday cards to any kid among our friends that had a birthday this month since they can't have a party. And that was really fun. Her husband and her son are training for the new virtual jdrf ride. And they all just signed up for the Disney run again in January. She also wrote we are all alive. I see you, Samantha, that sense of humor. And speaking of the ride, Elizabeth wrote in that the reimagine jdrf my ride is good news. And she'd like to see me talk about the new program with one of the managers we have that in the works. I'm going to be talking about that. So the jdrf rides in person for the fall, unfortunately, were canceled, which I think was the right thing to do. But you know, there were a lot of people who really enjoy that and we're banking on it, and we're already fundraising. So jdrf my ride is a way for people to participate, even though they can't travel to these locations. I will put more in the show notes on this, but I will also be doing hopefully, a whole podcast on it soon. You're off Emil Altman, who is part of the Facebook group wrote in I don't know if this is what you're looking for, but I will be hitting 39 years of pumping the second week in June, and I hit 23 years of CGM use in March, he will mark 59 years with type one in November. I had him on the show a while back. He was an early adopter of diabetes technology. In fact, he worked in the industry for a while. So really great stories from him. Perry who lives with type two and is in the group. I'm always happy to see him. He said that his dad survived heart surgery that he is needed since March and finally had the valve repair last week, which would have been early May. Perry works with the fire department in South Carolina and he says good news. My crew has not liked masks gloves or hand sanitizer. And I gotta say, this is my favorite of the week. My dear friend and Sutton who is also the Outreach Manager for our jdrf is so creative, trying to keep people connected online. And she created two events for children who you know aren't able to meet up right now because we do a lot of that in our area. So she created And this isn't just for girls. And it isn't just for boys, anybody could go to anything. She created a tea party, a virtual Tea Party, and she created a virtual Lego build. And I'm going to share the photo of one of the kids built a meter out of Legos. And it's unbelievable. It looks so good. So I'll be sharing that and I hope you check it out really good and creative stuff. Do you have a Tell me something good story it can be. I think this is a great example of what I would call you know, these smaller stories, but still big accomplishments. Good news in our community. I mean, if you running a marathon or you're celebrating 59 years with type one, we want to share that too. But I just love this segment because it gives us a glimpse into the good stuff that's happening. You can share it in the Facebook group or you can ping me Stacey at Diabetes connections.com and tell me something good.
Before I let you go tell you a story about something bananas that happened in my house recently and I think this might be the first chapter in my novel Next, The World’s Worst Diabetes Mombecause that book stops really right in the middle of middle school. And it's not as though we haven't continued to make mistakes. So I will tell you the punch line first in that everything is fine. Benny is fine. It's all good. But what happened was, he had had a day, just one of those Perfect Storm days where the decks calm had expired, I accidentally left his pump off. And of course, a few hours later, he was a very, very high now I since COVID-19, and we've been around each other so much. I've actually been less on him than I think I have been any time in recent memory. his bedroom in our new house is upstairs. Mine is downstairs, which is totally new for us. We have control IQ with the tanta pump, which has been a dream and he's doing really really well. But you know, things happen. So it's about six or seven o'clock at night. He realizes he's having the pump issue. Of course he didn't have the decks calm. So you know, we didn't know that there was an issue for a lot Longer than we would have otherwise, we did a blood sugar check and it just gives you that high, you know, there's no number associated with it. And, of course, we did all the protocol you're supposed to do. Huge shot, you know, gave him the correction by injection, change the pump inset slapped on the dex calm, drank a ton of water and checked for ketones. And I went downstairs because Ben he never has large ketones. I mean, in all of his years, he's had medium once I'm not would not get anything I can get. But you know, he's been high for a sustained amount of time through illness or just wackiness or you know, dumb stuff with diabetes, and he's never had large ketones, but we still do check because I just don't want to get lulled into complacency, right, people change things go I just I don't want it to slip. So he texted me and he said, Mom, the keto stick is black, which we've never seen before. So of course, I run upstairs and they look at it and it is it's super dark purple. So I'm like, Alright, well, you just had the injection because it's a urine stick. It's probably a couple hours behind. Drink a ton of water. We'll monitor From here, if in two hours, we still get a really dark, large ketone reading, we'll call the endo and he'll walk us through what to do next. Okay, so I'm freaking out, right? I'm thinking to myself, why don't I have a blood ketone meter? What's wrong with me? I'm the worst. Why don't I have so I'm online, I'm looking for blood ketone meters, you know, like, How fast can I get one and we just, you know, we, we've never had the need, so don't yell at me. Then two hours later, blood sugar is coming down nicely, he's feeling a little bit better, right? Things are gonna be fine. And I sit in his room and he goes to the bathroom and it comes out and he's like, wow, it's still really dark. And I look at the strip
Unknown Speaker 45:33
and I noticed it looks really weird. We use the regular old keto sticks that have little square at the end, and it just has one square.
Unknown Speaker 45:41
Unknown Speaker 45:42
has two squares, and one is dark purple, and one is light pink. I thought
Unknown Speaker 45:47
to myself, what
Stacey Simms 45:48
the heck is this? So I look at the bottle. And if you know you've already know what happened, I had purchased diagnostics. These are sticks that measure glucose and ketones and The dark purple was the glucose hidden of large ketones. He had small ketones, maybe medium, maybe. So for, you know, big sigh of relief, and that was it. But oh my gosh, I was flipping out before that. So now we know now we have to be more careful. But that's the next chapter. I've already got The World’s Worst Diabetes Momstuff ready to go? Never a dull moment. All right, a big thank you to my editor john Lucas from audio editing solutions as always, for helping make sense of a lot of my nonsense. Thank you to you so much for listening. Don't forget about the book to clinic program. If you want to jump in on that or you know, a clinic that would like to get on the list to receive books. I'd love to hear from you as well. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Unknown Speaker 46:52
Diabetes Connections is a production of Stacey Simms media.
Unknown Speaker 46:56
All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
Chris Wilson helps run some of the largest diabetes technology groups on Facebook. He's also always on the lookout for the latest news from these companies and very involved in clinical trials.
Chris also shares his diagnosis story, inside scoop on Facebook groups and even talks about bowling in sandals. Yikes.
In Tell Me Something Good, a middle school 3D printing class helps out a 9 year old with type 1 and a running event goes virtual & big
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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 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 0:27
This week, Chris Wilson helps run some of the largest diabetes tech groups on Facebook. It turns out he's also very involved in clinical trials. This one for a new emergency glucagon,
Chris Wilson 0:39
kind of an interesting experience. They hook you up to IV and so on and push your blood sugar down, I want to say under 50 and then turn off the IV and give you the injection and watch what happens.
Stacey Simms 0:52
Chris tells us more about participating in trials. Staying on top of diabetes news and bowling in San Jose. Tell me something good. A Middle School 3d printing class helps out a nine year old with type one. And a running event goes virtual and big. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I am so glad to have you along. I'm your host, Stacey Simms. And you know, we aim to educate and inspire about type one diabetes by sharing stories of connection here. How are we doing these days? I gotta tell you, I'm having good days and some rough days. I think like everybody out there. I don't know. I feel like I'm not doing enough. Right? I have this weird feeling some days where it's not like I'm not doing enough in my house, which I am not because we moved to a new house at the beginning of March. I know great timing. And so when I tell people that they're like, Well, you've had so much time to set things up and get organized. I kind of Yeah, I guess We haven't really jumped right in and set everything up the way I think we might normally do. We certainly have the time. And many rooms look very nice. Many rooms still have stuff in boxes. Because I don't know, there's there's some days where I have a lot of urgency. And I feel very efficient. There are some days when I lie on the couch and watch YouTube all day. So I'm trying to be kind to myself, like I always advise everybody else to be, you know, I don't think this is very unusual. There are some people doing amazing things out there. I mean, I don't so, you know, I'm trying to figure out what I can do. I'm trying to serve the diabetes community, certainly, but you know, I think we'll find ways to help as we move forward here, certainly in my local community as well. But I was talking to my kids about school. My daughter was concerned about the number of credits she was able to register for, I mean, long story short, like a lot of colleges out there. They're making some changes they're adjusting. No decisions have been made yet, but the way that people registered for classes changed a little bit. And so she was really concerned about Getting the number that she wanted as an incoming sophomore. And I said to her, you know, why? What's the big deal? Because this school year may look totally normal. Everybody may go back to college, everything's fine. You know, who knows? It may look extremely different. Nobody goes back to college, they continue online learning or they get there and things change. I mean, who knows what's going to happen this fall? So all we can really do is act like it's going to be, quote, normal, register for the classes that you can, but expect the unexpected and realize that, you know, maybe you'll take some summer classes. Maybe you won't graduate in exactly four years, which horrified her you she's a very good student. And I was able to say to her look, did you have big plans for 2023? Yes, she's not on a set schedule, which kind of made her laugh, but also made me realize I've got to be more kind to myself, too. I mean, the podcast is not getting out on Tuesdays, like clockwork, as it has been, and I very much pride myself on that schedule. I think it's Hey, to let these things go, right. I mean, we want to come out of all of this with our mental health as best as it can be. And if that means tonight, I need to watch the what's up with that skit from Saturday Night Live on repeat, because and if you haven't seen this, I'm not really into Saturday Night Live lately, but I saw the one from home. I laughed so hard at the what's up with that, and I couldn't believe it was an ongoing sketch. It's so stupid and so funny. And it was just remarkable. And the one with Zach Galifianakis where he's playing the flute, I'll link it up in the show notes. That's how much I left and it's so dumb anyway. But if that's what I need to do that night, I'm going to let myself do that. So a long way of saying, I hope you're hanging in there, I hope you're not being too hard on yourself. For You know, when we went into this, we all thought I'm gonna organize my house and I'm gonna work out every day and you know, there are people doing wonderful things, but it's okay to do ordinary things and be there for each other and just come out the other side of This was a feeling that we made it through. I keep reminding myself we're doing something important by staying home. Right. That's how we're helping. One thing that really has helped me a lot through this is doing some of these live events and chat events and just the zoom calls. I've been doing a bunch lately, had a lot of fun last week doing the world's worst diabetes parent meetup. That was amazing. Thank you Project Blue November for letting me do that on your page. We got a great group chat with some parents told our mistake stories and gave away some books gave away some amazon gift cards. I'm doing stuff this week with the college diabetes network. And of course, I will be doing the 300th episode taping. As you listen, that will be Wednesday. So I believe this episode is going to be coming out either late Tuesday night or Wednesday morning. So Wednesday, April 29. I will be live on Facebook answering your questions and talking about the diabetes community in June of 2015, which is when I launched the podcast holy cow So that's the episode 300 taping. Okay, all right, getting to Chris in just a moment. Diabetes Connections is brought to you by real good foods. And last night Ben he came downstairs and said, Hey, do we have any ice cream? And we're at the point of this where we have quite a lot of ice cream we have, but we didn't have what he wanted. We had like regular I think my daughter had some Ben and Jerry's. We had some mini ice cream sandwiches, but he wanted the real good foods ice cream that I've talked to you about. And I said, I think maybe there's some in the garage freezer and he went and looked and there wasn't any love, so I have to order some more. And as I'm looking right now there is a sale 20% off on their ice cream, so I forgot to get Benny's order today. He really liked the peanut butter. They have the super premium peanut butter chocolate chip ice cream is so delicious. I happen to be a big fan of just the chocolate and my husband likes the mint chocolate chip. We didn't try the salted caramel list. I'll have to put an order in for that. This ice cream is so tasty. It's not like that. A lot of lower carb ice creams, you know that chalky kind of chunky weirdness that you can get sometimes, but this is, as they say, a real ice cream experience with real ingredients, low sugar, 200 calories per serving, they list all the ingredients online so you can read everything that goes in it. And of course, when they ship it to you, they ship it in a cooler with dry ice when we got our first shipment of ice cream. It had we're in North Carolina, we're in Charlotte where it's already warm. I know it may have just snowed where you live, but it's been beautiful here and when we got our first shipment, the ice cream is frozen solid. They do such a great job free shipping on orders over $50 just go to diabetes, connections calm and click on the real good foods logo.
My guest this week is well known to a lot of you who are on Facebook, or maybe his profile picture is you may not actually know too much about him and that's why I'm talking to him today. Chris Wilson is one of the admins for two very large closed Facebook groups. We're talking thousands of people in these groups all about tandem and Dexcom. Well, if you're not familiar, and I know some people still aren't on Facebook or have left, you know, an admin is somebody who may have created the groups, but is always there to make sure things run smoothly. They can add or remove people or kick you out for bad behavior, that sort of thing. I run two groups on Facebook, and it's a lot of fun, but it can be a lot of work. And Chris always seems like he knows an awful lot of behind the scenes stuff. He doesn't work at tandem or at Dexcom. He gets asked that a lot. And we also talked about his clinical trial experience. I didn't realize like he had so much to say about that was very interesting. So here is my interview with Chris Wilson. Chris, welcome to the show. Thank you so much for jumping on to talk to me. I really appreciate it. Well, thanks for the invite Stacey. You know, it's one of those situations where I feel like I know you because we talk on Facebook all the time and I see your posts and you know, I read the valuable information you provide And then
Chris Wilson 9:00
I realized as we were recording as I, as I hit record, I don't really know that much about you at all. I'm not sure I've been less prepared for an interview in a long time. So I appreciate you writing this out with me. Well, I mean, that's kind of the the nature of the the online community is we interact with people, you know, we get to know them, at least in one aspect of their lives, but somebody that you've never met in person, you never had a chance to sit down and have a drink with or whatever. So,
Stacey Simms 9:29
well, I'm gonna start with a very hard hitting question. I did my research and I looked you up on Facebook. And it was very difficult because we're already Facebook friends, but it does say the last time I wore shoes was January 2015. Is that true? And if so, what's with the not wearing shoes?
Chris Wilson 9:47
That is true? It just sort of I mean, I wear sandals.
outside the house, it just sort of happened by accident. My job's done. don't require me to, you know, wear close toed shoes or anything I live in Southern California on a really cold night in the winter it might get down into the 40s there's you know, no real need to wear close toed shoes and insulate one's feet.
Stacey Simms 10:18
All right, okay, so I have a much better mental picture of your day to day life. No close toed shoes do formal wear. You're not going to the office with a briefcase.
Chris Wilson 10:28
Right? I even actually have a pair of custom made bowling sandals that I use for bowling.
Stacey Simms 10:33
You do not you? I do. Can you post a picture of that when we do the when we hear this? Because that just sounds like you never got hurt wearing them
Unknown Speaker 10:42
now. Oh, man. That's funny.
Chris Wilson 10:47
Well, when I had the idea to do it, because bowling was at that point, the only time I was wearing shoes, and I sort of had the idea of Hey, I could you know, take the soul off of these a tournament a bowl of cheese, replace it with a bowling soul and be Half of my friends said, Oh, that's awesome. And about the other half said, That's the dumbest idea I've ever heard in my life.
Stacey Simms 11:07
Well, now that I know you're not getting hurt, I'll refrain from commenting, but I'm what my initial reaction was. Okay, so we're going to talk bowling, we're going to talk all sorts of stuff. But let's start with diabetes, which is really kind of how we know we found each other. Certainly, Tell me your story. When were you diagnosed?
Chris Wilson 11:26
I was diagnosed my freshman year of college. Oh, wow. I had and I was probably starting to really get the beginnings of symptomatic as I was leaving for college. But you know, you go away in August and I went to school 3000 miles away from my parents on the other side of the country, and so no interaction with them. You know, they didn't see me for anything like that. And I started losing weight in the classic symptoms thirsty all the time having to go to the bathroom all the time, but you never crossed my mind that something that could be diabetes. This lasted all the way until Thanksgiving. I went to go see my grandparents for Thanksgiving. And my grandmother took one look at me and said there's something not right with you. My grandfather was type two. So he had a meter and two mornings in a row, they prick my finger and got readings in the three hundreds. And I went to calling the advice nurse for my health insurance and said, you know, hey, what should I do? I'm from California. I'm in DC going to school. Right now I'm in Pennsylvania, my grandparents house and they said, stop whatever you're doing, do not pass go do not collect $200 get yourself to the nearest emergency room. When I got there. Actually, the meter wouldn't even read. They had to send my blood to the lab to get a blood sugar reading and it came back at almost 1000 milligrams per deciliter. And I was well into DK And the doctors looked at me and they said, We can't explain how you're alive, let alone conscious. Oh my gosh. And so I got to spend a couple of days they actually sent me to the pediatric ward even though I was an adult, because that's where all the people that knew type one were right. So I spent a couple of days in the hospital there my my mom flew out to come and collect me and they taught me how to give myself shots and prick my finger and everything else. And then after that, I went back to school when finished out the semester.
Stacey Simms 13:32
Okay, I have a couple of quick questions for you. Do you remember what it felt like when you got your first dose of insulin? I've heard that that's just an amazing feeling after you've been feeling lousy like that for so long.
Chris Wilson 13:43
Oh, it is it's you can almost like feel the the ketones leaving your blood is sort of the the way that I think about it. almost feel like pins and needles inside as things get really bad. And if it's happening slowly and building up, you don't necessarily feel it acutely. You just sort of build up a tolerance to it when they started me on the insulin and everything else it was just like this weight was lifted and I didn't even realize how bad I had been feeling until I felt better. Yeah, that's amazing. I
Stacey Simms 14:14
you know, obviously not living with diabetes myself I don't have I can't I can't relate to that at all. But I can only imagine how much better you must have felt. But then to go back to college, what was that transition? Like? Because I assume your mother did not move into your dorm
Chris Wilson 14:27
always wanted to? She did not. She made me tell my roommate and all the other people on my floor. What was going on? Some of them or were actually like oh, wow, cool. You know, you get syringes and stuff. It's almost like we're living with a druggie. Lots of joking about it, but at least the first couple years actually, it was almost like an extent I had a really long honeymoon phase. And so I didn't even really need it. You know, I gave myself the insulin and I ate when I was starting to feel hungry. You're low and didn't really even think about you know, managing intensely or correctly or the way that we do now. It was just okay this happened. We'll we'll deal with it. And
Stacey Simms 15:15
and when when was this What year was this? If you don't mind me asking? This was 1997 Okay, so before certainly before CGM, and well before a lot of people even had an insulin pump,
Chris Wilson 15:25
right he will log was I believe brand new at the time.
Stacey Simms 15:29
It is wild to think about that stuff. I mean, Lantus had just been approved pediatric Lee when Benny was diagnosed, we thought Wow, this is so cool. We get to use this new insulin that just got approved. You know, it was really it's amazing when you look back on it. When did you start getting interested in technology and I say it like this because I assume you are pretty interested since you run these these groups now on Facebook.
Chris Wilson 15:50
I didn't pay too much attention to it because for the longest time, I was surviving uninsured haha and the over The counter Rnm I actually couldn't get to a Walmart. There wasn't a local Walmart. I was getting it from CVS in the basement of the Watergate hotel, if you believe that. That was the the local CVS. Wow. And that was just, you know, kind of what I knew. I mean, even at that point, anything newer than that, the more modern analogs and stuff like that was just prohibitively expensive without insurance. So I figured that out, I figured out you know, which meter had the cheapest test strips that I could could get and I didn't test nearly enough wound up in it DK and hospitalized briefly, once during that time, although not entirely due to the insulin regimen. My parents had come to visit me and I, being a impetuous college student got mad at them and decided I was going to take a road trip so I hopped in my car and drove to Florida from DC without any insulin. By the time I got back, I was feeling pretty awful and went and checked myself into the yard.
Stacey Simms 17:00
I feel like I want to say something. It's funny, Chris, as a parent, I'm, you know, I hold my breath when I hear stories like that, but as someone who's talked to people with diabetes for a long time now, so many people have done things like that it's just life, you know, and if you as you're listening you're I could never imagine, you know, things happen, right? It's nobody's perfect. So I'm glad you were okay. That is kind of scary.
Chris Wilson 17:24
Well, I wouldn't do that now. Oh, of course. I know. I know a lot better. Now.
Stacey Simms 17:28
Of course, when were you able to get insurance and then to get you know, a pump or CGM and everything that you have now. Right back to Chris in just a moment, but first Diabetes Connections is brought to you by One Drop and getting diabetes supplies is a pain. Not only the ordering and the picking up but also 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 trip 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 are Kobe's required. One less thing to worry about not that surprising. When you learn that the founder of One Drop lives 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 comm and click on the One Drop logo. Now back to Chris talking about when he was able to get coverage for what he really needed.
Chris Wilson 18:39
It was with the ACA when in fact, I had actually looked at insurance options briefly and the one insurer in because I've moved back to California by this time, the one insurer in the state that would even offer me a policy quoted me a premium that exceeded my gross income once the ACA went into effect and they couldn't raise the premium Just because I had type one diabetes, all of a sudden it became an option and you know, we went through the the standard of Okay, we're not going to do the the regular the mph anymore, we're going to get you on lattice and get you on human log. And after trying that and tweaking things here and there and figuring out what worked and what didn't, and they decided that really, my basal needs fluctuated so much throughout the day that I needed to, to be on a pump. Then after I was going through, I don't know 1015 test trips a day cuz I was testing about once an hour, trying to catch the spikes and dips and figuring out where things were. And I was regularly having my blood sugar dip into the 50s and 40s without feeling it. At that point, my endocrinologist looked at me and said, You know what, we should probably put a CGM on you. Hmm.
I said, Okay, yeah, let's let's do that.
Stacey Simms 19:58
What did you think? When you got on Dexcom,
Chris Wilson 20:01
my first thought was, oh my god, this is amazing. I can actually, you know, see, maybe not quite in real time but basically close enough what's going on and where I need to make adjustments to things that are crucial say, you know, make knowledge your superpower. And then a lot of ways it really is. And that kind of actually dovetails in with my job because as an IT consultant, I do a lot of working with data and data analysis and stuff like that, and actually having enough data to be able to analyze it and then make changes based on it. Yeah, was almost a perfect fit.
Stacey Simms 20:40
So how do you get from being you know, a regular guy, work for yourself and you're on a pump and you're on a CGM, taking care of yourself. You're doing well to suddenly having thousands of people in these Facebook groups where you big Facebook guy from the beginning?
Chris Wilson 20:54
Well, I've actually been on Facebook. Basically since there was a Facebook. I was in college. We were, I want to say the fourth or fifth school to get Facebook. That was number one was obviously Harvard, that Stanford was second. And then they started expanding to two other schools. And where did you go to
Unknown Speaker 21:15
college? I don't know that you said it
Chris Wilson 21:16
was it was George Washington University. I see.
Stacey Simms 21:19
That's funny. I mean, I went on, I got on in 2008, which I thought was really early. If you go, there's no record of that. Because long story short, I messed up my Facebook when I left my old job at the radio station, and went from like a friend to a pub, whatever I did, I messed it all up. But I was on in 22,008. And I thought that was early. But oh my gosh, you've been there really? Since the beginning?
Chris Wilson 21:40
Yeah, I want to say it was like 2001 or two, when it was the Facebook when it was the Facebook. My endocrinologist actually had encouraged me to when I was even just starting to research pumps, and then CGM and the other things. I was encouraged to go online, find user groups, do some research. So I joined initially the the tandem t slim pump group. And as I got better at using it and more familiar with it and figuring out how things worked, and at least the best way to do things for me, I started answering more and more questions. After a few months of that, I think one of the, the original admins of the group asked me if I would be willing to help out with admitting and you know, making sure people didn't do things that violated the rules and answering questions and stepping in when incorrect information was given out, and that sort of thing. So that happened, and not too long after that happened. Then, when the G five came out, one of the admins of that tandem group started the G five CGM users group. She sort of tapped me to come in and help out with that. So that's sort of how I wound up there. I mean, both of the groups have have grown significantly since then. It used to be that we, you know, let anybody post whatever they wanted pretty much. It that's, you know, had to be clamped down on somewhat just to keep things orderly.
Stacey Simms 23:12
What's the what are some things that people should know about Facebook groups? Like, is there anything that's kind of behind the scenes stuff that would help us either post better or use them better? Or they just drive admins crazy.
Chris Wilson 23:24
One of the big things that that gets me at least is Facebook is not Twitter. There's no character limit. You don't have to cram whatever question it is that you're asking her describe the situation in 140 or 280 characters or less, you know, by all means, use lots of words be as descriptive as possible, because sometimes in there, there's a little curl that have a little nugget that gives away what the actual source of the problem that person is having is the other
Stacey Simms 23:56
thing that was really interesting. We saw this so much with control IQ When it first came out was people don't search the group to see if their question has already been answered. I mean, I run to smaller groups, and they're usually really great. But that's kind of drives me crazy.
Chris Wilson 24:12
It used to be, it drives me crazy less, because I've just kind of learned to shrug it off. In large part, it's a function of just the way that Facebook's algorithms and ranking in the way that it orders the posts that people see works. Facebook's always trying to get the most recent stuff up at the top, or the stuff that it thinks you might be most interested in based on stuff that you've interacted with in the past. And there's, I'm sure tons and tons of algorithms and things that go into deciding what you see and when. And it's not even intuitive, especially looking at it on a phone or on tablet versus on the desktop website. There's even really a search to group option in a lot of cases. And there are Tons and tons of people that do search that that's one thing. But the people that do search, almost never actually post a question because they get their answers by searching the group. So those are the people that that we frequently interact with. It's you know, and you, you wind up seeing somebody posts a lot, because they've never realized that there's a search function. Good point.
Stacey Simms 25:24
So when control IQ came out, and this is particular to the tantum group, like hundreds of people, thousands of people, it seems like came into that group. Was it that many or is it just, you know, I'm sitting on the outside wasn't really that many people,
Chris Wilson 25:37
I want to say, because the group's kind of, you know, had a long steady growth. But I want to say for especially that few months when it was approved and not yet released, and then right after it was starting to roll out, there was definitely a spike in interest. We were seeing the group grow at almost three times the rate that it had been before that Wow.
Stacey Simms 26:00
So if you don't mind, let me ask you about your experience with control IQ because there's still you know, certainly a lot of people who haven't who have tanto haven't tried it yet. And there's a lot of people who've listened who haven't switched over to it, you post a lot of, you know, very publicly posted about your experience. How's it going now?
Chris Wilson 26:16
It's so going along, okay, I've actually backed off because, of course, when it was new, I'm paying attention to it all the time, right? I'm looking at it, I want to see what it's doing. I want to see why, you know, see if I can figure out why it's deciding to do what it's doing right now. Now, I've gotten to the point where I trusted enough that I frequently just let it go. And sometimes that means that I don't catch or foresee something that I would have otherwise. So my time range has dropped back down a little bit from where it was I'm not running, you know, 9597 90% time and range. It's closer to being in the low 90s still, but a slacker in all honesty The low 90s is fine. And my average blood sugar has come down significantly. And the biggest thing that I was anticipating getting help with from it, I'm still getting out which was gone phenomenon. I'm still seeing that improvement. I'm not as a general rule waking up at 180 or 200. Even though my basal rate doubles before I wake up, Wow, it's so definitely helping. And I've kind of decided I'm gonna let it go and try to be a normal user, not a someone who's focused on it all the time, and sort of see how that rides out.
Stacey Simms 27:38
I think that almost in a way, it's better. I think that and I have because I have a 15 year old son, who is very responsible. I mean, I don't want to put him it's gonna sound like I'm putting him down. I'm not he's very responsible. But truly being a person who really would prefer to never touch this pump again, has helped him so much because I know people who overreact everything and they're not doing as well with control like you He bonuses for food and then leaves it alone. And you know, four or five hours later, he'll be like, Oh, yeah, it's good. You know, he doesn't, you know, and I'm not I'm not checking him as much as I used to because he's a teenager. But it's amazing. When you would let it do its thing if your settings are right, which is a whole other story. It really works out great. So, you know, we'll see how it goes for you. But I think that you know, anything you can do to think less about diabetes is also very nice.
Chris Wilson 28:23
That's right, it gives you you know, more time to think about the other things in your life.
Stacey Simms 28:27
So let's talk about other things in your life. You're okay, so you bowl, you're an IT guy work for yourself. There's some surfing stuff in your bio, do you surf or is that a company that you work with?
Chris Wilson 28:37
It's primarily my biggest client is a nonprofit organization that focuses on ocean waves of beaches that includes access for recreation. So there's a lot of surfing related stuff there. I can surf I have served. I'll be honest wearing a pump and CGM is is not necessarily conducive to being out in the water recreating, I would need to figure out some sort of untethered regimen or something if I wanted to do it regularly, I can at least paddle out and catch a wave or two and not get tossed around too much. But actually, the the big surfing thing is comes from my dad. My dad who's now in his 70s, you know, started surfing when he was 15 or 16. And still goes out and in surfs, usually two or three times a week at least when he can when we're not all under house arrest.
Stacey Simms 29:38
Yeah. Oh, that's great, though. That's really cool. Do they live nearby?
Chris Wilson 29:43
They do. They live about a mile mile and a half for me. Oh, that's great. So how
Stacey Simms 29:47
is everybody doing? I you know, I I don't know exactly when this will air but I assume it was it will not be at a time when we're all running around outside yet. So how are you holding up?
Chris Wilson 29:57
We're all doing okay. The nature of my job is such That I can largely work from home. Most of the time anyway, that hasn't been a huge impact for me. My parents have figured out Netflix and zoom, and doordash. And so they're adjusting to their new restrictions, although they still do get out and walk around and make sure they get their exercise in as well. So
Stacey Simms 30:25
well, who knows what it's gonna look like on the other side of this. So we'll just do what we can. But one of the questions that you I've seen you answer in the groups and I want to talk about is, you know, people sometimes think you work for them, or you work for Dexcom and you don't, but you get a lot of really good information. Can you talk to us about what you do? You know, how can lay people stay up on information from these companies, because it's all public, I assume the things that you're looking into.
Chris Wilson 30:55
It is, none of it's a secret. It's just a lot of it isn't well publicized. I pay attention to every press release that the companies put out. You know, I have one of the stock tracking apps and I have it set up to notify me whenever any of the companies on my list put out a press release, and it's not just Dexcom in tandem, it's insolate for the Omni pod. Medtronic psionics. Basically, almost anybody in the diabetes space, I try to at least keep up with what they're doing. I listened to the conference calls that they have for investors.
Stacey Simms 31:33
I salute you, because I have been on some of those conference calls. And they are so boring, but they are they have great information, but they are a slog, sometimes
Chris Wilson 31:42
they can be most definitely and if it doesn't work out schedule wise that I'm able to listen to the call. Honestly, sometimes I prefer to go back through and read the transcript after it's done. There's that I follow the diabetes media. You know, I read everything that gets Put just about everything that gets posted on diabetes mind or diatribe, or any of the other publications that sort of track what's going on in the diabetes world. And well, I do have some friends that do work for those companies living in San Diego or near San Diego, where they're headquartered is kind of inevitable, but they don't share any inside info with me or anything else. It's just a matter of really paying attention. I'm curious why you
Stacey Simms 32:31
do that. What is it that makes you so interested? Obviously, you have diabetes, you were the technology, but most people don't
Chris Wilson 32:38
follow it that closely. I think part of it's just sort of the way that I brought was brought up, I have sort of the the engineering bent to and that goes again, with with the job, but, you know, I like looking at things and taking them apart and figuring out how they work and how they're put together. And that's not necessarily always a option with diabetes technology. Although obviously the, the we're not waiting, the CGM, the crowd group has has done a lot with reverse engineering, what goes into these devices and how they're communicating with the radio signals and figuring out ways to sort of hijacks some of that to use for their own purposes, in ways that the tech wasn't necessarily originally designed to be used. But I've got some of that same sort of inquisitiveness about how things work. I mean, I remember when I was eight years old, I took apart my mother's computer that she had at home to install an expansion card so that I could attach a joystick to it to play games. And I remember being told that man, if you put that to get back together, if it doesn't work, you're not getting your allowance for the next four years.
And you were eight and it worked. And I was about eight and it worked. was safe there.
Stacey Simms 34:01
It's funny. But that says a lot. Right about being curious about, you know, having a knack for things. And for having the I don't know, there's something different about people who take a look at technology and say, I can do that. It's like you said that like the night scout people in the DIY crowd to be able to look at something and have the confidence or just even the curiosity to say we can make this better. I think that's really admirable. I don't have that. There's no doubt I'm, I'm scared of it.
Chris Wilson 34:28
Well, a lot of it just comes down to looking at it looking at what is the data is going into it, looking at what the actions are, that are coming out of it and figuring out what must be happening in between those because you don't necessarily have any insight as to exactly what the system is doing. But if you input a two and it gives you a four, and then you input a four, and it gives you an eight, and you input an eight and it gives you a 16. It's probably just taking whatever the input is and multiplying it by two and giving you the answer.
Stacey Simms 34:57
When you look at the technology and I No that, you know, who knows exactly what timelines are going to look like after this situation that we're all in right now? What's coming that excites you down the road for diabetes technology, because there's a lot that's on the horizon.
Chris Wilson 35:13
I think the biggest thing that I see and it's actually sort of already here is the option to be able to infuse multiple hormones both insulin and glucagon. Now that we actually do have a shelf stable liquid glucagon on the market, that being the G voke. from Paris, I would assume that Zealand's product isn't too far behind that since that's what's being used for the for the island with beta bionics. So we should have two options before too much longer. Hopefully, just having the ability to not just take your foot off the gas, so to speak, but actually be able to apply the brakes is I think, going to be a major thing and then going along with that and something that I haven't really seen talked about too much is Lily's faster humalog which I mean, that's one of the big challenges is always that food is fast and then slow, the slow. And so anything that that can be done to speed up the insulin action to get it closer to what you would actually seen that happen naturally when your pancreas dumps that insulin straight into your veins, I think gonna be a big improvement.
Unknown Speaker 36:26
You mentioned g Volk. Did I read you were in one of the trials. Did you talk about that at some point? I did. I've discussed it.
Chris Wilson 36:33
From time to time I do various clinical trials as they as they pop up. A lot of the research gets done here in San Diego, and if nothing else is an option to get paid for having diabetes, which is nice to have happen. Once in a while. I did participate in the phase three clinical trial for for the G Volk, where they actually compared it to the standard glucagon kit to prove that it was of equivalent efficacy. That was Kind of an interesting experience, they hook you up to IV insulin and push your blood sugar down, I want to say under 50 and then turn off the IV and give you the injection and watch what happens. And the sort of the cool thing was that they actually didn't make me take off my CGM when I was doing it. So I saved and screenshotted the data from the days that I did both the traditional glucagon kit and then the, the product that they were testing the G voke to be able to look at and sort of compare the two, but doing that kind of stuff. And I also did the G six clinical trial, proving that it was good for 10 days if you wore it and also that it would block at least up to a certain dose of Tylenol.
Stacey Simms 37:43
Oh, that's interesting. I didn't realize you're in that trial too. Did they give you a bunch of Tylenol?
Chris Wilson 37:47
It was thousand milligram pill of kill of acetaminophen. They had as a saw, I want to say it was you know, 15 ish people and all basically crammed into a clinic room. IVs in so they could do blood draws every five or 15 minutes depending on what stage we were in of the of the testing. And they were running them through the lab grade glucose meters right there in front of us and comparing the readings from the CGM because we were all wearing both the G five and Digi six so they could compare the two. That's wild. And it was it was basically controlled chaos for about six hours.
Stacey Simms 38:28
Yeah, I've signed up any for a few you know, to get into some clinical trials. But here in Charlotte, North Carolina, we really don't have the access. We could drive to Virginia sometimes sometimes there's some stuff in the Raleigh area, you know, the Research Triangle, but and the pediatric ones are hard anyway, but we'd love to do one that's really interesting. I'm going to tell them about that thousand milligrams of Tylenol in one pill
Chris Wilson 38:51
which actually isn't too much more than the extra strength the normal extra rectangle
Stacey Simms 38:56
so Oh, wow. I used I thought it was like 200 milligrams in one And then so it would be five. But I didn't think that the extra strength oh my goodness,
Chris Wilson 39:04
well, if nothing else, I mean the the clinical trials also give you a chance to have testing done that nobody would ever pay for as a normal patient. They're looking at all kinds of stuff I've done at various stages of research trials for other things where they're looking at measuring your resting metabolic rate. And they've actually got a giant plastic hood that they put over your head to measure how much oxygen is going in and co2 is coming out. And based on that they can calculate how fast your normal metabolism is running. And they'll do it under various conditions where they're running extra insulin into you and extra sugar to counteract that insulin in an IV. Under normal circumstances, I would never do think it was 100 gram of carbohydrate challenge to see what would happen but I do Did a trial where they did it before and then after giving the medication that they were experimenting with to see what the difference was how high did your blood sugar peak? How fast did it come down? And nobody would ever do that. They're laying in the bed and they're practically doing blood draws and you've got your CGM on and you can see exactly how your body responds to various things. And it was actually kind of cool because if I had not done that trial, I would not believe that in score lasted five hours in my body. Oh, yeah. But because I did that, I've now actually got documented proof that I can show that no, like, here's where I had the hundred grams of carbs and gave myself the the bolus of insulin. And I could then watch as the blood sugar's slowly comes down and tails off. And that was six hours of measurements. Well, I
Transcribed by https://otter.ai
What happens when you're diagnosed with COVID-19 and you live with type 1 diabetes? It happened to Patric Ciervo in early March. Patric shares his story, including how his diabetes reacted, hospital issues with people who don’t really understand insulin pumps and how he’s doing now.
In Tell Me Something Good, a familiar name in the diabetes community, recovering from COVID 19 and now donating plasma, we salute more health care heroes.
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 0:27
This week recovering from COVID-19 while living with Type One Diabetes, Patrick servo was diagnosed with the virus. In early March,
Patric Ciervo 0:36
my temperature started going down like a 101 to five times 5am it was about a 93 I woke up in a puddle of sweat, we call 911. Fearing that I was going into some type of shock
Stacey Simms 0:50
Patrick wound up in the emergency room with a committed he shares how diabetes was managed issues with people in the hospital who don't really get insulin pump And how he's doing now and tell me something good a familiar name in the diabetes community also recovering from COVID-19 and now donating plasma and we salute more healthcare heroes. 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 so glad to have you along. I'm your host Stacey Simms, we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two back in 2006. He is 15 now and a freshman in high school. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get the podcast I used to work in local radio and television news. Before I jump in with Patrick a little bit of housekeeping, we are fast approaching Episode 300 This is Episode 298. I have never made a big deal about numbering episodes because I don't know, it doesn't really matter what order you listen to the show in. I do number them internally just for organization, you know, keep track that way. And depending on what app you use, I know Apple podcasts will number them, you can see it right there in the app. Depending on what you use, it shows up or it doesn't. But we do have a very robust search engine on the website. And that does not rely on numbers. You just search by topic. And for me as I listen to podcasts, that's how I want to find previous shows, right? If I want to look something up, I'm gonna put the word into the search. I'm not gonna remember Oh, that was Episode 212, or whatever. I bring the numbers up though, because at 300 episodes, a lot of podcast apps start limiting what you see, when we get to 301 or you know, 350 or who knows 400 You're still only going to be able to see 300 episodes in the app. I'm not quite sure how many people are scrolling through to see everything. I am putting something new at the website you should be able to with one click to see all 300 episodes something unfortunately we don't have right now, because frankly, it just takes forever to load. But watch for that at diabetes, connections calm, they'll be a way to click and see all 300 episodes, if you're interested in kind of going back and scrolling through back to 2015. I should also mention if you subscribe on a podcast app like Apple podcasts, which is a really easy, easy way to listen to the show, if you listen through social media, that's fantastic. Listen, whatever, you know, whatever is easiest for you. But if you use a podcast app, and you subscribe, that 300 episode limit doesn't apply. you subscribe for free, I wish it was called something else. But when you subscribe to a podcast, it has nothing to do with buying a subscription or signing up for a subscription. You're literally saying to the app, give me all the episodes for free. So there you go. Gotta say a quick thank you for getting me to Episode 300. I'm so thrilled when we started I wasn't sure how long it would last. I certainly wasn't looking five years into the future. So thank you So much for listening for sharing these episodes and for frankly, becoming part of a community. We have an unbelievable Facebook group and I've connected so much with people over zoom and the chat over this time. I really appreciate it. So thank you for letting me continue to serve you. Diabetes Connections is brought to you by one drop. And I spoke to the people at one drop and you know, I was really impressed at how much they get diabetes. It makes sense because 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. Their 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. Imagine that one drop diabetes care delivered, learn more, go to diabetes connections calm and click on the one Drop logo.
My guest this week was one of the first people in his community officially diagnosed with COVID-19. And Patrick servo was diagnosed with Type One Diabetes more than seven years ago. So like you I had a lot of questions about what it is like to live through Coronavirus, while also living with type one. Now, of course, keep in mind as we're speaking here, every case is different. Every case of Coronavirus of COVID-19 to be specific, presents a little differently, some very mild, some much more severe, a lot of asymptomatic cases we hear about and type one diabetes kind of goes without saying on this show. Everybody handles that differently as well. So please remember that this is about Patrick. We can extrapolate some information from here. Frankly, I find it very reassuring. But at the same time, please talk to your healthcare provider. Don't jump to conclusions and I will link up much more information at diabetes dash connections. Calm the episode homepage in the podcast show notes. So here's my interview with Patrick servo. Patrick, thank you so much for joining me. How are you doing? How are you feeling
Patric Ciervo 6:09
these days? I'm feeling well, thankfully, my symptoms have been gone for a while. And yeah, I've been feeling good.
Stacey Simms 6:19
Wow. All right. So from where I sit, not knowing anything really sad. It just seems so scary. So I appreciate you sharing your experience. Let's back up. How did this all start? You've been living with type one we should say for for seven, seven and a half years now. So you're not exactly new to type one. But what happened in terms of feeling ill a couple of weeks ago.
Patric Ciervo 6:40
So basically, early in March, I had a busy weekend and everything. There was a work event on Friday, about where we went out because there was someone's last day, but I was running around Friday and Saturday, Sunday night. I was at my girlfriend's apartment and we were just beat from the weekend she works with me. So we were just beat from the whole thing. And she noticed that my body temperature had started feeling hot. But because we were both rundown, we didn't really think too much of it. So, the next day I woke up, I felt good. I didn't really feel bad at all, like maybe a minor thing, but nothing to worry about. So I went to work Monday, but that night, my body temperature was hot again, and her roommates a nurse, so we had a thermometer, and my temperature was 103. So we went to the primary doctors on Tuesday, I was tested for the flu, which came back negative Faker really diagnosed me with anything. I didn't mention Coronavirus, but he didn't think it was that he tested me for the flu again with a more accurate test but the test will come back the next day. So in the meantime, he gave me an A biotic and Tamiflu and told me to take Motrin Tuesday night, my temperature started going down like a 1012. By the time was 5am. It was about a 93. I woke up in a, like puddle of sweat, we call 911 fairing vows going into some type of shock. And I was in the car since then.
Unknown Speaker 8:19
So when you guys called for an ambulance, were you thinking this is diabetes related? or What did you
Patric Ciervo 8:25
think? Well, she had looked up and everything that diabetics have more like more of a chance to go into a shock from fever or something like that. So she was kind of the one pushing the 911 call. So we did that. I didn't think too much of it until a little bit later on. When I was like in the ambulance, I still wasn't feeling well. By the time I got the ER, I was feeling good, and my temperature was normal.
Stacey Simms 8:53
It's so hard to be the person in that circumstance, right? You're not thinking exactly clearly the person that called you know, is trying to figure out What's going on? When do you remember? Do you remember when they said okay, this is gonna be COVID-19
Patric Ciervo 9:06
they didn't they test me again for the flu in the ER, they tested again twice, and that both of them came back negative. We got the call from our primary the second flu test that he did came back negative, but I was already like things were back to normal, my temperature was fine. So they tested me for COVID as a precautionary, and because they tested me, they put me in the ICU and my own room and they want me to be there until the test results came back, which they were told would be the next day. I didn't get it back till that Saturday. I was in there on a Wednesday. Wow. But the doctors that would come in saw me like I was immediately getting better and everything. My only symptoms before the diagnosis were the fever and a cough. I didn't have trouble breathing, but they thought I looked good enough that they didn't think It was COVID
Stacey Simms 10:01
That's amazing. So you start feeling better and that's when you find out that's what you had.
Patric Ciervo 10:05
Yeah, I know. So I'm thankful I can't like I was already on the mend when I found out and it was a little bit before like all the craziness started in the world and so I didn't go in in too much of a panic state. When I found out I was diagnosed with it. There was still like a shock like, oh God, like diabetic and I've been hearing these things aren't good, but I was getting better each day. So after like a deep breath and everything able to get back to a good mental state.
Stacey Simms 10:35
I know everybody wants to know about diabetes and you know what you now looking back what you think of that part of it, but I want to ask before we move on, How bad was that test for COVID-19 you hear like it's really far up the nose is that How bad was
Patric Ciervo 10:49
it? Yeah, it was. It was exactly that out the nose and everything as they did in both nostrils, two different ones at once. It was not fun at all. You know, it was something I could live with and everything.
Stacey Simms 11:04
I'm sorry to ask. I just you know, I think about what how they test you for strep. Yeah, right. It's always like you gotta gotta gotta get it far enough to gag a little bit. Uh huh. Your
Patric Ciervo 11:12
nose. Oh my god. Yeah, it was pretty much yeah, exactly like that only your nose and I was like, flinching and everything. But it was totally doable.
Stacey Simms 11:23
And I know it's worth it. Please don't send me nasty emails like, yeah, it's just one of those things that I don't want to ask about. But looking back, what about your diabetes during that time? I think people do get very concerned about you know, treatment and blood sugar's you didn't know you had it. So it was kind of difficult or different to think about managing that way. But looking back, anything stand out?
Patric Ciervo 11:45
Well, in the hospital, my blood sugar was higher than normal. For the most part. I'm not sure how much of that was the illness related. I was very stressed in the hospital and could not move at all. So I think that also had part to do with it. Because I didn't have a problem coming down from the highs, there was nothing with my diabetes to think like something's off. I need to get checked out the days leading up to it. I've been fairly decent you know for the most part
Unknown Speaker 12:14
so you didn't notice any like really wacky high blood sugars before the diagnosis. No, no treatment, right like that.
Patric Ciervo 12:21
No, no. Yeah, thankfully.
Stacey Simms 12:23
So when you got the test back at the hospital You said you were already kind of on the mend. How much longer did you stay there?
Patric Ciervo 12:28
They released me Friday, and I got the test back Saturday. So I was self isolating just to wait for the test result. And then that's when I got the call.
Stacey Simms 12:40
What do they tell you after you test positive what happens next even at home?
Patric Ciervo 12:44
Yeah, they had given me in the hospital what to do if it does come back positive. They gave me a worksheet like to do less than everything. Just basically everything we've been hearing, you know, self isolate for two weeks. I think it was something like 72 hours, but two ways you can be like out of the quarantine is for 72 hours, you can't have a fever and other symptoms have to be gone. And the other one was or you have to get tested again, it has to come back negative. And I didn't get tested again. When I was at home quarantine. I only had a fever one other time.
Stacey Simms 13:21
So you feel pretty confident your past.
Patric Ciervo 13:23
Yeah, I did develop a headache and the quarantine.
Stacey Simms 13:27
So again, back to diabetes. Did you ever sound like the mom now? But did you call your endocrinologist and loop them in? Right back to Patrick as he answers that question. But first diabetes Connections is brought to you by real good foods. high protein, low carb, grain free, gluten free and terrific. If you're trying to eat keto, their line of foods just keeps getting bigger. We've been talking about them for so long. Now. I think when I started they only had pizza. Right, but now they have stuffed chicken breakfast sandwiches, you can get the pizza, just the crust, so you can kind of make it whoever you want. They have entrees. They are of course available in the grocery store freezers, but they're also so easy to get to your door, their whole line can be delivered. And they have a lot of specials right now. There's free shipping specials, but also on their website. If you sign up, you can get all the coupons and promos delivered directly to your phone, make it very, very easy. Find out more go to diabetes, connections comm and click on the real good foods logo. Now back to Patrick and I was asking him if he caught his endo when he was admitted.
Patric Ciervo 14:44
You know what, I had an incident in the hospital where when I got there, they asked me if I had an insulin pump. And I told them I did and they asked me if I wanted to like you know, administrate my own insulin. I said yeah, and there was a bit of a next up with The nurse who was under the impression she was giving me insulin shots, but they weren't not taking the fact that I already had insulin on board. And that, like they would not be calculating that. And so the insulin they gave me and they seem to not want to give me any type of basal insulin, they just wanted to do like check every two or three hours. If I was Hi, give me a correction. I didn't call my personal endo, because they're kind of hard to get ahold of. But I have a, I go to this camp for athletes with Type One Diabetes called diabetes training camp and the endo that has that, that ended that runs it. I texted him about that initially. And every day since then, he had texted me or called checking in how I'm doing. I told him my blood sugar's were high. He told me don't try to get to like 100 to 120. Don't aim for perfect, just as long as you're able to get to 140 to 180. You should be fine. I have any problems.
Stacey Simms 16:01
And yeah, I mean, that's one of the worries that I always have in the hospital. I mean, I'm there with my son being crazy mom. So you know, they're not going to give him extra insulin, but it's so frightening for you if you're there by yourself, which you had to be clear that up. I mean, I'm envisioning this nurse trying to give you a shot and you holding up your pump, you know, you're trying to ward her off. Did you argue with them?
Patric Ciervo 16:24
Uh, yeah, I mean, I'm not like, I like I don't like conflict at all and everything. But this was like, there was no way I wasn't standing my ground this and everything because I had like, four or five units on board, because I was trying to come down from like a 260 or something. And I'm explaining it to them, and explained that the doctor said that eventually they understood what I was saying after a few minutes. They said, All right, they'll talk to the doctor. And about 15 minutes later, they called me saying that the doctor says fine.
Stacey Simms 16:56
No, thank goodness. Do you use a CGM as well? Yeah. And did they let you kind of use that in the hospital? Did they insist on doing finger sticks?
Patric Ciervo 17:04
They did do finger sticks for their own record, they said, but that's all my phone. I was just going off that the whole time.
Stacey Simms 17:11
All right, so have you followed up with your endo? I mean, it sounds like you're on the mend. Doesn't sound like you needed to check in with him. I'm not trying to mom you
Patric Ciervo 17:17
right? Yeah, chicken. I mean, he was texting. We were texting and calling back and forth when I was doing the two week quarantine as well as my primary. My primary had called and everything I told him I had a low grade fever the one night he said, You know, sometimes that happens, I won't be too worried about it unless it's kind of a stays. And it the was one night and I woke up the next morning fine.
Stacey Simms 17:44
Alright, so I'm gonna ask you some personal stuff you do not have to answer. All right. Here we go. One of the things that I that we see so often when people in the diabetes community are talking about the fears of Coronavirus is you know, you have to have quote good Control to come out of this in good health, you know, and that we've seen that people, especially with type two diabetes, and all those comorbidities don't do well, but COVID-19 and I hit I always hate asking people I actually I don't I don't ever ask anybody in the show with their agency. And I'm not going to ask you, but are you a perfect diabetic?
Patric Ciervo 18:18
I'd say a B plus student. I'm definitely not perfect, but I overall I pretty well control.
Stacey Simms 18:27
I just think it's important to ask because, you know, I think there's a lot of fear that if you're a one c isn't 5.9 or 6.1, you know, consistently that that illnesses are just going to knock you down. And it's just not the case. Obviously, you want to be in good health, in quote, good control. So you know, share as much as you'd like. I think that's important to hear. I have seen a video or two of your Oh, yeah. You should say your comedian. Yeah. And you know, I've seen some of your blood sugars. They're not all the time.
Unknown Speaker 18:56
Right, right. Yeah. Which videos are you talking about?
Stacey Simms 19:00
Seek specifically there. I was thinking of the drinking game. Okay. Yeah.
Patric Ciervo 19:05
So yeah, just along with this episode. Oh, cool. Yeah, I that was a few years ago. So I kind of forget what was going on that I did that about three years after I was diagnosed three or four years. And my whole thing was FM pi, it's fine. But as long as I like, come down, I'm not gonna stress about it. Because in the beginning, my educator introduced me to one of her, like interns one day or, and she goes, like after I've been a diabetic for a year. And she says, This is Patrick. He used to call us every time he was about 200. And well, because I was told I wasn't supposed to be 200. So like the first like, year and a half, I was kind of like, going like crazy, making sure I could blood sugars. But once I realized I could be a little higher, and I'll be fine. Just as long as I came down. I was happy.
Stacey Simms 19:56
Yeah, definitely. I think we all handle this in a different way. You I have long decided that perfection is not an option.
Unknown Speaker 20:03
Stacey Simms 20:04
exactly. So I think it's just important to, to just kind of spotlight that a little bit and I appreciate you sharing that. I'm not gonna make you the spokesperson, I promise for people with diabetes who have been through something like this, but having gone through it, you know, what is your advice for other people with type one? You know, is there anything that you would tell people to to concern themselves with more or less?
Patric Ciervo 20:27
I mean, I kind of feel like basically, I didn't have that too hard at that experience, which is, in some ways I kind of feel bad because you know, I would like to say that like I fought all genders everything, like in spite but and I know everyone's experiences not gonna be like that. So I feel very fortunate, but like, I think a lot of the things like me recover quickly, was that the second I got to the hospital, I got there like when symptoms were early, and I've shot up with like fluids early. I think that's the number During my quarantine, I was drinking water, like non stop and take and taking vitamins. I was just doing everything I could to make sure even though I was feeling better that I wasn't going to let this slit, if you had to be in the hospital, I'd say definitely advocate like the hell of your diabetes management and how you go about it. I think for nurses who like work great, otherwise, they kind of have misinformation about what to do. Yeah,
Stacey Simms 21:29
I'm curious too. Did you bring a bunch of supplies with you? I've seen some people recommend, you know, take up to two weeks, you know, if supplies if diabetes supplies to the hospital if you have to go?
Patric Ciervo 21:40
Yeah, I mean, I'm on the on the pod so I grabbed all that I grabbed strips, and my my Omni pod and I grabbed pumps. I had my girlfriend put like juices and gummies in her purse, and then my parents did come up and everything from South Korea. They would go to my apartment and they bought more stuff when I need it.
Stacey Simms 22:04
It's so interesting because you were in the hospital before much of the lockdown or I shouldn't call you know, the the states that decided to self quarantine whatever we're calling it stay at home shelter in place. This would be for most of that went into place, wasn't it?
Patric Ciervo 22:20
Yeah, I mean, my first day in the hospital was the day Tom Hanks was diagnosed. So that's then. So that's basically my buck marker for how early it was you in Telmex? Yeah, same day.
Unknown Speaker 22:34
Stacey Simms 22:35
You were diagnosed as a young adult. were you diagnosed correctly right away because I keep hearing more misdiagnoses at that age.
Patric Ciervo 22:41
I was diagnosed correctly. I really like my primary from South Jersey. I was in Ireland for a week, the week before. And I was drinking water non stop. I was in Ireland with my family. And my mom noticed two days later, we had a surprise birthday for At the surprise party all our friends are saying I look super skinny. So about two or three days later actually one day after her birthday, her actual birthday, she made me go to the doctor she talked to me and I told him my symptoms and he looked at me and he told us nurse to get the stuff to test me with instead tell my patients I'm going to be a while And so yeah, so my blood sugar was like 500 something and he made arrangements for me to go to the hospital and all that and gave me his personal cell phone if I need him at all during the night or something like that. And thankfully I didn't but yeah,
Stacey Simms 23:38
and you mentioned the the camp and then in the athletes that you've been involved with and you know, you believe I've done a lot of bike rides. Haha, did you find all of that because that makes such a big difference once you find that community?
Patric Ciervo 23:49
Yeah, that's definitely been like my lifesaver and everything prior to the diagnosis, went against into cycling, and I wasn't spiking like that much but Now my friends went to bike. So I was looking for a group to bike with. So in the hospital, I googled cycling and diabetes. And I found that jdrf ride to cure. And I contacted one of the coaches, who is also a type one. And the endo that runs this camp is his personal endo. So he gave me his information. And I think going there since
Stacey Simms 24:23
Oh, that's great. Yeah, going forward. Now, have you been instructed to do anything different? Are you just kind of back to full health? Do they monitor you? Do you diabetes wise or otherwise have to think about anything else?
Patric Ciervo 24:34
No, I did get a call from the health department and and Hoboken where I'm living now and in South Jersey, where I'm from, but other than just kind of initially checking in on me. I haven't heard anything. We get a call from my primary doctors nurse. I got a call from her a few times, just checking in, but since I recovered, no one seems to be concerned about me. I guess I Have a lot on their plate. But I've been self isolating. I've been doing everything. Basically everything everyone else has been doing washing hands. What? If I go out to walk the dog? I'll wear a mask and everything. You know, I don't know what's what. So just kind of be precautious in any area I can.
Stacey Simms 25:18
And I meant to ask when you were isolated for those 14 days. Did you live with your girlfriend? Did you live with anybody else or was that difficult for you guys?
Patric Ciervo 25:26
When my test result came back Saturday, she had already thought she had it. But she got tested then after my test result, and she came back positive. So we don't live together. But I have a roommate up in North Jersey, and my sister has a house to herself. She said she would go to Mar parents beach house for those two weeks and that I could use her house. So I was there for like a few days by myself. But once my girlfriend was diagnosed and everything, she has two roommates as well and she didn't want to be around them. They would still be isolated. together
Stacey Simms 26:00
in the hospital or otherwise they didn't treat you with anything did they? It doesn't sound like you were you know ascribed anything special?
Patric Ciervo 26:06
No they basically they did give me an A biotic when I left. And I think I don't even remember they were giving me lots of fluids and everything. Maybe they did give me some type of tail or something. I don't even remember what that was.
Stacey Simms 26:18
Yeah, yeah. But nothing on an ongoing basis.
Unknown Speaker 26:21
No, no. Well, Patrick,
Stacey Simms 26:23
I'm so glad you're okay. And thank you so much for sharing your story with us. Yes. Posted if you get the call to I don't know, donate plasma, or whatever the heck they're doing. Haha. You know, let us know what where you go from here, but I really appreciate you sharing your story.
Patric Ciervo 26:37
Yeah, thank you for having me in everything.
Unknown Speaker 26:45
You're listening to diabetes connections with Stacey Simms.
Stacey Simms 26:51
More information at diabetes connections.com. I will link up more information about generally speaking, you know COVID-19 type one diabetes and other interviews with people with type one who have been admitted, diagnosed officially with COVID-19 and have recovered and are speaking about it. So I will I'll post all that information. I will also put the guest Patrick's blood glucose drinking game video that we mentioned, that's in the Facebook group. And I will post it in the show notes as well just go to diabetes, connections comm and click on the episode homepage. Patrick and I talked off the air briefly about the new policy or the provisional approval from the FDA to have CGM used in hospitals. And that would be hospitals would actually give the people admitted a continuous glucose monitoring system. dexcom is involved. Abbott is giving the Libra array. So it's very, very new. In fact, it was after Patrick was released from the hospital. I believe that the FDA approved that provisionally but what I'm trying to figure out still and maybe by the time this airs, we'll have the answer to this. I'm trying to figure out if that is Only for people who come in without their own system, right? mostly people with type two diabetes, as we had talked about in the conversation with dexcom CEO Kevin Sayer, or if you come in with type one diabetes, and they're more willing to use your own system, or if they give you one if you don't have one, so there's still a lot to figure out there. But as you heard, he still had to do a lot of educating. And that, to me is so difficult when you're the person who has type one and who is in need of medical care. I mean, not everybody is going to be as able, as Patrick was to describe the situation and say, you know, I've got this. So man, um, you know, we've got to keep advocating, we've got to keep educating, time for Tell me something good, which is usually a good segment for that. But first diabetes Connections is brought to you by dexcom. We started with dexcom back in the olden days before share, and I always meet people who have no idea that there was a thing before share, right that there was a time when you couldn't look at your kids blood sugar on your phone. So trust me when I say using share and follow up really made a big difference. Benny and I have always set parameters about when I'm going to text him, you know how long I'm going to wait, that kind of stuff. And it really does help us talk and worry about diabetes less. If he's asleep over if he's away on a trip. It gives me so much peace of mind. It really helps me if I need to troubleshoot with him, because you can see what's been happening over the last 24 hours and not make a decision based in just one moment in time. The alerts and alarms that we set also help us from keeping the highs from getting too high, and help us jump on lows before there were a big issue. Internet connectivity is required to access separate dexcom follow up to learn more, go to diabetes, connections comm and click on the dexcom logo.
Tell me something good. Recently, we have shifted to talking about healthcare heroes and stories of people with type one diabetes who are in healthcare fields. And I'm going to talk about one in just a moment. But first, I want to share a great story about a gentleman who doesn't Have Type One Diabetes doesn't have diabetes at all. But he is very much a part of a diabetes community. You may know Mike mangus, because I've talked about him here on the show. And I've certainly talked about his products. Stay put medical is not a sponsor, but I love them. After all these years of trying different products. I think about two, maybe three years ago, we finally started using stay put, and this is gonna sound like a commercial, but it's unbelievable for Benny, everybody's skin is so different. So it can take a while to figure out what's right for you. Here's the example I give last summer stay put kept his decks calm on the entire week of diabetes camp. And then for three and a half days at the beach. Yeah, we restarted the sensor. So they were in the water every day at diabetes camp. They were sweaty, they were gross. And then we went to the beach and did ocean swimming and all the gross stuff in the sand. So that thing is unbelievable. But I'm supposed to be doing a commercial for state but sorry, just kind of setting it up. But Mike who heads up state but he was diagnosed with COVID-19 In early March, and he spent four days in the hospital, he is also fully recovered. And he's able to donate plasma in the hopes of helping others. Plasma donation for COVID-19. I mentioned at the very end of the interview with Patrick, it's newly regulated, it's experimental. So it isn't widely available or used yet. But Mike was right in the front saying I want to do this. He was knocking on doors as soon as he recovered. I will link up more of his story. He's got some coverage in the media, especially in Florida, where he lives. So I just think that's a great news story. And we'll follow Mike and kind of see how that goes and see what happens with plasma donations that could be really interesting, and hopefully helpful. I also want to tell you about Amy She is an RN. She's a mom to Marcus Marcus is 16. He was diagnosed in June of 2016. And he was 12 at that time, so Amy is a nurse at a rural health clinic in Oregon. And she says finding the balance between the demands of work she does have reduced it hours now, but even so, managing medical costs and keeping her and her loved one safe these days is a big challenge. She says I'm a quilter. So I've been making fabric masks for my co workers, high risk patients and acquaintances to keep myself busy. These are crazy difficult times. But I firmly believe this world would be a better place having made it through until then she says I'm taking T one D mom life by the horns, and one day at a time. Amy, thank you so much for sending that in all the best to you tell Marcus we said hi. And if you have a Tell me something good story, please go ahead and share it. You can shoot me an email Stacey at diabetes, connections calm. You can post it in the Facebook group. However you want to get it to me, you can message me on social media. I would love to tell your good news stories. And of course we post them on social media every week as well. Hey, can you hear that? Benny is playing video games. And the kids you can call them video games anymore, but you know what I mean, he's on his Xbox or whatever. He's screaming soul. Right now that if I didn't know better, I would think he was being, you know, physically attacked. And I've talked to my friends, this is very typical of teenage boys. Oh my god, they're so loud. So I'm gonna go yell at him when I'm done taping, I think it's gonna be all good. And maybe I'll go secretly record him some time. Just you can hear it. Oh my god. But hey, that's one of his big social outlets right now. You know, he gets in the headphones and plays with his friends and they're all together. So I'm not gonna complain too much. I'm gonna go in there and tell them to knock it off. The big threaten my house these days is you better behavior. I'm changing the Wi Fi code, you know, fate worse than death right now. And we're all on the systems all day long. I don't want to look at my time on my screen time, right or the time on your phone. They all have those features. Now you can tell how much you've been on the phone. Oh, my goodness.
Well, this is the part of the show where I generally talk about where I'm going. And I have been going a lot of places online recently. Yeah, I mean, it's all virtual. But I only bring that up because I want to tell tell you about a discount that I'm doing for the world's first diabetes mom right now. Yes, of course, if you're new, this is my book. It's available on Amazon. There's an audio book, you can get the Kindle version, of course ebook. So I'll put the link. It's always in the show notes. But I bring it up because I was talking to groups this week online, and I did a special discount code for them. And I want to pass it along to you. As I am taping this, I am scheduled to talk to jdrf in Michigan, and I'll be doing a world worth D parent meetup, which will probably already have happened by the time this episode comes out. But I've got a promo code not for Amazon, you have to go to diabetes connections.com and order the book through my website to get the discount. And it's very simple. The discount code is worst, just the word worst w o r s t. And that promo code will be good. Until next week, April 28. Again, that promo code is worst. I believe it saves you five bucks off the cover price. Unfortunately, you still have to pay for shipping. I know a lot of people go to Amazon because of that, but this will actually still be less than it costs on Amazon. promo code again is worst. And I can't wait to get back on the road, not just to sell books, although that's a lot of fun too, but you know, to meet people and do these presentations in person. There's so much fun to still do, but it's a little weird to talk to my computer and not talk to a crowd of people. I like the people a lot better. Well, thank you as always to my editor john McKenna's from editing solutions. Thank you for listening. I so appreciate you being here every week. What a time we're living through. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Unknown Speaker 35:48
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
D-Podcasters Unite! Stacey teams up with Alan Nolte, co-host of Dads and Diabetes podcast, Amber Clour, host of Real Life Diabetes, part of Diabetes Daily Grind and Matt Vande Vegte, co-host of Pardon My Pancreas and co-founder of FTFWarrior.
They talk diabetes, podcasting tips and tricks and even previous experience with pandemics!
In TMSG – some wonderful healthcare heroes in a diabetes community.. and a big religious milestone while we’re all socially distancing.
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