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The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Now displaying: 2020
Sep 8, 2020

When Shaina Hatchell's little brother was diagnosed with type 1 at age nine, she knew her life - and her life's goals - had changed forever. She decided she would teach everyone about diabetes when she grew up.

Now a registered nurse and certified diabetes educator, Shaina has written "Shia Learns," a children's book to teach families about diabetes. In this episode she shares her story and answers listeners questions about teaching kids with T1D all about acceptance. Watch Shaina's JDRF FB Live here

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

In Tell Me Something Good, cheerleaders and a lot to cheer about and.. our newest segment.. Innovations.. new studies and approval for the latest hybrid closed loop pump systems. ..

More information here about Semglee insulin

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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Episode transcript:

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.

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:26

This week when her little brother was diagnosed then 12 year old Shaina Hatchell knew her life and her life's goals had changed thanks to their diabetes educator.

 

Shaina Hatchell  0:38

It was in that moment of her teaching my entire family teaching me allowing me to trial everything that I realized like this is what I want to do with my life. So at 12 I already was telling my mom, I'm going to be a diabetes educator one day because I loved it so much. I love learning.

 

Stacey Simms  0:54

Shaina is now a registered nurse and a certified diabetes educator. She's also the author of a new children's book about type one. And she's answering your questions about kids and T1D

In  tell me something good cheerleaders and a lot to cheer about, and in our newest segment, innovations, new studies and approval for the latest hybrid closed loop pump systems. 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. If you are new Welcome. My name is Stacey Simms. I'm your host 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. He is now 15. He's a sophomore in high school. So we've been doing this for a while. My husband lives with type two. I don't have diabetes. I have a background in broadcasting and that is how you get the podcast and I'm laughing a little bit because as I was recording that, I don't know what I said, but I activated the Siri I just said it again on my phone, don't say anything, okay, didn't activate it. And he started talking. So if you heard that I apologize. But it's funny sometimes.

And I promise I'll get to the guest to the diabetes stuff in just a minute. But I was talking about my radio days recently, I worked a long time in radio, and I'm taking part in a podcast festival, a virtual podcast Festival, which is all about learning and sessions and panels and stuff, kind of like diabetes festival, or I guess, more like a diabetes conference. But it's all about information and podcasting, and we were talking about my time in radio. And it's amazing to me to think about how many people worked on that show that I was on. I did a four hour morning news show with a co host and a sports guy and you know, reporters and lots of moving parts and running around this little studio. But we had sound engineers and we had producers and you know, we had interns that we had so many people working on that show. And so to do a podcast, of course is usually I mean unless you're NPR or You have a lot of corporate power behind you is usually a one person or maybe a two person show. I do have an editor who helps me out after the fact. But it's when little things happen like my phone going off that I remember those days. Not that I'm really itching to go back to spending five hours because we did also have an hour show prep in the studio, which was the size of the room that I'm in right now about the size of a, let's call it a standard bedroom with four or five, six people every day, starting at four o'clock in the morning. So I can't say I recommend that. Oh, my goodness, sorry to get off on such a tangent, but I am taking part in the Charlotte podcast festival. If you're at all interested in podcasting, I will link it up. I'm sure you could attend. It's free. And then later on in the show, I'll get back to diabetes conferences and tell you what's on tap because there's some interesting changes happening. Of course, everything's still going virtual, but some new announcements and I will get to that a little bit later on in the show.

Okay, Diabetes Connections is brought to you by One Drop, and I'm really impressed at how much they just get diabetes. It makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. 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.

My guest this week is the author of what is meant to be a series of books for children and families about type one. The first book released is called Shia Learns, author Shaina Hatchell is a registered nurse and CDE and her brother was diagnosed when he was nine. The book is adorable the illustrations are really top notch. It's gorgeous. But the substance, of course, is what this is all about. Shaina talks about her family's story. And she answered some listener questions that you sent in about kids and type one. And she gets these kinds of questions every day in her practice. She meets a lot of new onset families. She talks about that and a lot more. Here is my interview with author Shaina Hatchell.

Shaina, thank you so much for jumping on. I know, it's been a really busy time for you with the pre sales, but the book is out now. Thanks for spending some time with me.

 

Shaina Hatchell  5:32

Thank you for having me. I'm so excited and it's been busy, but I couldn't miss this interview.

 

Stacey Simms  5:37

Oh, thank you. All right, let's just jump right in. But we'll talk about your background and your brother and everything. Let's start by just talking about the book itself. What is Shi'a learns, tell me the story of the book.

 

Shaina Hatchell  5:50

Oh, right. So I have been wanting to write a book that does some sort of diabetes education for many years, even before I became a diabetes educator, there have been a lot of experiences that I've had in my home with my brother and my parents that I felt like when we were going through certain situations, it would have been great to have a book that would have kind of given us a little bit more guidance, because we only see the doctor every three months. So now that I had the time and I felt like you know, I had enough knowledge to really create what I wanted to create. From the beginning I decided to go ahead and start writing some books. And in the beginning, Cheyenne learns wasn't the title was just me writing honestly, more so like poetry style books about diabetes education, because I love poetry, and then it kind of just dawned on me like okay, this is turning into a series and this should be about a child and let me just go ahead and title it Shai learn. Shi'a is the name of a child that I lost during gardening. decided that, you know, this was another way for her to be bored. And then just having her be the title of the book she learns, which is actually perfect for me. So the reason why I wanted to make her a young African American Girl is because I wanted to help with the disparities and care that some African American face. And I do that by increasing education with the book in the topics that will come in not only this first book, but the books to come, as well as increasing representation. So that is the reason why we're starting with preDominantly African American characters, but that is going to grow, because I want everyone to feel represented in these books,

 

Stacey Simms  7:39

a lot to unpack there. But let's start with the book itself. That first, as you said, it's a series what's the story of the first book? Is it her diagnosis? Your take me through it?

 

Shaina Hatchell  7:49

Yes. So in the first book, it's actually going to be explaining in following Shia and her parents in their journey for a new one set in the hospital. So basically in the first one Shia is going to start to have some films that the parents notice are not normal. And so they take her to a hospital. And mom explained to the providers, what she's been noticing about Shia. And then they do a couple of tests and they diagnosed her with type 1 diabetes. Then in comes the diabetes educator Dom who will start to explain to the family, you know what type one diabetes is how insulin works in the body, and give them everything they need for discharge. So it's literally just that first story that anyone who has a loved one with type one or if they're the type one themselves, have experienced, you know, that first new onset experience.

 

Stacey Simms  8:45

I gotta say, the illustrations are just beautiful, but one that caught my eye. Oh, yeah, one that really caught my eye is the depiction of insulin as a key, right where we're explained a lot. Can you take us through what that illustration is showing, and I know As you're listening, I'll put some things out on social media and in the show notes, you can see these photos. It's an adorable depiction of what insulin does.

 

Shaina Hatchell  9:08

Yes. So anytime I educate because as a diabetes educator, I do preDominantly new onset education. So this first book is literally what I teach almost every single day. And when I'm explaining to families, what insulin does in the body, I always draw the picture on the board. And so I sent this to my illustrator and she did an excellent job. Thank you, Candace Bradley, you did an amazing job in actually bringing this to life. But what I always say is that when we eat carbohydrates, we eat food that has sugar. So your carbohydrates are even if we had like a regular juice or soda, which is sugar in the simplest form, you know, the carbs broken down in the stomach turn into sugar and then the sugar that pure sugar goes to the bloodstream. And when there's more sugar into the bloodstream, the body sends a message to our pancreas that sends a message to our body. To sell to release the insulin, and insulin is the only key that can unlock ourselves so that sugar can go inside and be used for energy.

 

Stacey Simms  10:09

Our endo use the exact same analogy with the key and I I wish I had a book like this to show my two year old. I don't think he even has that analogy in his head to this day. Tell me a little bit more about your story. Your brother was diagnosed when you both were kids that has to have influenced you. What do you remember about his diagnosis? He was nine.

 

Shaina Hatchell  10:28

Yes, he was nine and I was 12 years old. I remember when he started to lose weight. And I remember when he started to drink a lot of water and go to the bathroom a lot. And that was probably for like, I want to say two weeks before we my mom, I say we but I was too young to be a part of that before my parents decided that they needed to take him to a doctor's appointment, but I remember just seeing him like the weight and then at nighttime, he started to put sheets from off of It started with sheep into his pants into his pajamas. So that if he went to bed while he was sleeping at night, it would like be on the sheets and not all over the bed. And I remember like, of course, as an older sibling in older sibling fashion, like making fun of him about it. And I think that's when my mom was alarmed because my brother was upset with me. And I told her why he was upset. And you know, I made a joke. And then I went to school. And when I got out of school, I got in the car with my mom. And usually my brother was first to be picked up. So I was expecting him to be in the car with us. But he wasn't and my mom was sitting and says, We're on our way to the hospital, your brother is in the hospital. When I got there. I just remember being really confused and feeling really bad about the joke I made and learning that he has type one diabetes. My family had never heard of a kid being able to get diabetes. And we had no idea that this was even possible for our family because we didn't have a family history of it. So we were kind of confused and then we of the day, the next day was a diabetes educator who explained everything. And it was in that moment of her teaching my entire family, teaching me allowing me to trial, everything that I realized, like, this is what I want to do with my life. So at 12, I already was telling my mom, I'm going to be a diabetes educator one day, because I loved it so much. I love learning.

 

Stacey Simms  12:22

But today, kind of pat you on the head and say, Sure, sweetie, are they Yes, we understand. And this is

 

Shaina Hatchell  12:27

something you're gonna do. My mom is like, amazing. She actually is like, Yeah, well, you know what? We need you. So yeah, you do this when you get and it was like it. From that point forward. It was kind of like a thing like Shay is going to become a nurse and she's going to be a diabetes educator. And I went to vocational high school and got my LPN at 17. And it was like, we're gonna make sure you get there. So they were actually super supportive from the beginning. It's fantastic.

 

Stacey Simms  12:56

And your brother is in the book, right? Am I he's one of the characters

 

Shaina Hatchell  13:00

He is he is a diabetes educator. So Dom is his actual name. And Dom is the name of the diabetes educator in the book. And he is the educator, because he taught me way more about diabetes management in the home and you know about diabetes in general, and how it affects the person then, than anything I've learned in any textbook or any other experience. I got that firsthand knowledge directly from him. So it was only right that he'd be the educator in the book.

 

Stacey Simms  13:31

You know, you you talked about how you want more representation for the African American community. We want to see more black characters in these books, and curious, there's so much misunderstanding, even in the middle community about diabetes and I hear stories of people who are Latino who are black, who have been told you can't have type one, you have type two, or you know, you don't understand what's going on. It just seems like there's a lot of medical disparities. Do you recall the Did you and your brother face that When he was being diagnosed

 

I know right back to our chat but first Diabetes Connections is brought to you by Real Good Foods. Real Good Foods is all about making delicious foods you feel good about eating high in protein, low in carbs and always made from simple real ingredients you feel good about eating. their newest products include these bowls they have these great meal bowls, Mongolian beef, lemon Chicken, Chicken lasagna, all low carb and in a handy little bowl. You can get all of their items delivered or find out where to buy. They're in our local Harris Teeter I know they're in the Walmart here as well. And you can find that in their store locator right on the website. While you were there. I highly recommend you get some ice cream. They do a great job of shipping the ice cream I was a little nervous about that. But it comes fully frozen. They do a terrific job and it is so good. My whole family loved the peanut butter I am always partial to chocolate and I thought the mint chocolate chip ice cream was top notch. Find out more go to Diabetes connections.com and click on the Real Good Foods logo. Now back to Shaina answering my question about whether there were any questions of the doctors minds that her brother had type one.

 

Shaina Hatchell  15:22

So when my brother was diagnosed we didn't face that. Personally, I think that his signs were pretty clear that this was type one. There was never a question for type two. But this is something that people of color do experience and I do have a friend of mine that she started to have the increase in, you know, thirst and urination and all of the crystal clear signs. She is an athlete, very thin and always healthy. And she went to the doctor's when she was experiencing these things and she was older and they automatically put her on That format and told her this was a type two diabetes, they didn't even try to test to test her for like any sort of type one. They didn't do any antibodies, any labs. It was just this was a type two diabetes because you are an older teenager, and you're African American, like that's what this is. And of course it ended up being type one. And so seeing her experience that and the frustration of thing I'm taking this Metformin on eating healthy, I'm exercising like you asked me to, and I still don't feel good. And not being heard initially was it was very difficult for me to see that because you know, me, I'm like, No, I know my brother is like, no, it's not it's got to be. And so to know that, that is an experience that many people of color with diabetes have is heartbreaking for me. And so just for like, if there are books that are available, that people of color that do not have diabetes at all can read, that will give them more of an understanding of what is happening in the body of someone with T1D, that if they see someone experiencing it their cousin, family member friend, that they'll be like, Oh my goodness, this is what I read in this book when I was a kid. And so you should ask them to check you for type one diabetes, or you know if they're experiencing it themselves, but they'll think you know, what I remember, these were the things that were talked about in that children's book. And so I should definitely be pushing more toward them. Checking for type one specifically, I

 

Stacey Simms  17:28

can't tell you how many listeners I have who diagnose themselves because of the baby sitters club books. So you know, it does work. Right. Exactly. It really does. So my listeners had some questions for you, if that's okay, if I could jump in and ask some advice questions, because you do work with families. Thank you so much for letting us do that. So I like this one a lot. Um, Valentina asks, how to handle remarks about what it is that you eat. She gets asked, What is that on your arm? Why do you get to keep that Your phone and nobody else can use she feels overwhelmed by the questions her friends are asking any ideas to help kids deal with that?

 

Shaina Hatchell  18:07

Yeah, you know, that can be it can be overwhelming to constantly get these kinds of questions. And so a part of why I created the book is that this will be something that children again, not living with diabetes can read, and start to understand a little bit better what's happening to their friends. And so being able to give them a book that is entertaining, that has these, you know, great illustrations and allowing them to read this content will help to decrease the questions, right, because there'll be able to get some of those answers in the book. But the other thing really starts in the home with the parents and the child. I find that the same way that we prepare for job interviews, adults, prepare for job interviews, we look over the questions if we can, you know, we have them and we think about the best ways to answer them so that when we are in that interview, with Parents, and we feel less stress and less anxiety because we prep for these questions is the same way that family should look at how they can prep for questions that may be x, you know, of their child or you know, is a child of yourself. So I think that it's really important for parents to sit with the child and say, Okay, let's talk about the kinds of questions that you might get asked, let's talk about what you would say if someone actually why you get to have your phone, or let's talk about the kind of answer to the question of why you're eating certain things or what's that when your body? How would you like to answer that, that way the parent can hear the child's response, and maybe there is some uncertainty and help really guide how that answer will be. A lot of times children are diagnosed and I know this because I do it. Sometimes, you know, you try to involve the child but depending on the age, maybe the child isn't as involved. And so as they get older and they start to understand a little bit more what's happening in their body. Sometimes the parents have those better answers and have never thought about having that discussion, you know, because the child's had diabetes now for, let's say, five years. So we think, you know, they understand but the reality is that the real understanding is with the parents who was really alert and and listening to what was happening from the beginning. So I think that that's really important.

 

Stacey Simms  20:17

That's a great point. I'll reach back to my son. When my son was diagnosed, he was only two. So he learns nothing, right. We learned to ride a bike. He used to say, when he had something your question, I don't know, his friends asked him a question, or they just pointed out or pulled at it or whatever. And he would say, that's my diabetes, you know, leave my diabetes alone. got older, we would teach him and he had different words for it. Now he's 15. And he has actually told people you know, hey, that's Skynet. I'm robot controlled. It's a tracking device. I mean, 15 year olds are a little bit more snarky. I would not recommend that. That's what you teach your children to say they will come to that themselves, but that's good advice you do you kind of roleplay and talk them through it. And it's okay to say it's a medical device. Leave me alone. In a polite way,

 

Shaina Hatchell  21:00

of course, of course, in a polite way, and just being able to be prepared for those kinds of things, and from some people are not ready to talk about it. And that's okay, too. I think that it is also important to understand that it's okay to just have healthy boundaries and say, you know, I just, I don't want to talk about that. Please do not touch it. And when you're ready to have that conversation, that's all right to

 

Stacey Simms  21:24

another question was, and it kind of goes hand in hand. There are children. And as you said, there, there are children who don't want to talk about it. My son is very open. We're so lucky that way. But there are kids who don't want to, and they get embarrassed by it. How do you help children get over that feeling of I don't want to call it shame. That's a bit of exaggeration, but they're more private. They're a little bit more embarrassed by diabetes.

 

Shaina Hatchell  21:45

It's actually funny that that's a question. So I like the liaison of my family and my brother, Matt, very fond of being open and talking about diabetes. Honestly, growing up A lot of his friends did not even know that he had diabetes, it's just not his thing. And he will even say it to me now, like, you know, this is not just not my thing. Like, you know, it's not my family like talking about it, I'm like, okay, you know, I think that it's just, again, I feel like everything starts in the home, if you make them feel comfortable and confident in it being okay that they that want to share all of the information that does help you know, them establish again, really healthy boundaries at school, building healthy boundaries with with friends, but I also feel like the war that we normalize conversations about diabetes, the more that we normalize, discussing, it's kind of like a kid with asthma. I'll give this example because I grew up with asthma. And I remember as a kid, my inhaler, having my inhaler, having to give my inhaler to my teacher at the beginning of class, and I remember you know, all the kids, we had our inhalers and baggies or names and we would just hand them over and no kid thought twice about it because there was a normalized conversation about being a child with asthma. So, kids Oh, that's your inhaler, because you have asthma, okay? My friend has it or I saw something about that, or my mom talked to me about that. And it became just so normalized that there was, I didn't feel ashamed, you know, I kind of felt a sense of pride in like handing over that inhaler like, yeah, I'm one of the special ones. What I have.

And so I think that if we have increased in the type of content that talked about type one diabetes, I think we'll see that kids will feel a little less shy about it, because it's going to be normal conversation to have so with me creating these books, I'm doing a lot of marketing to people that are not living with Type One Diabetes, I'm trying to market it to children in general so that it becomes more normal to know someone that has type one diabetes, I tell people all the time, you probably have met someone or you know someone or your your waiter or waitress, or somebody that you've encountered is either living with type 1 diabetes, or someone really close to them is, and so it's closer to home than we think. And if we start to have this be something that we just talked about, as usual, it really does decrease that feeling.

 

Stacey Simms  24:16

Yeah. When my son was in elementary school, especially for the younger kids, they used to always ask, you know, for your kid's birthday, maybe don't send in cupcakes send in a book. I mean, this was not because of diabetes. This was just because we had great teachers. I loved that. And so we would always send in a book about diabetes, like, um, you know, one of the Lilly diabetes books, or one of the books that we enjoyed is when Benny was little, and it was always a really popular book for other kids in the classroom. You know, they keep it a little classroom library and the other kids would bring it home and I would get emails from parents, like, Do you know my child brought home Is this okay? It's like, yes, it's for them to read. It's not like it's book like they didn't take it from him. Oh, my goodness. Okay. So let me ask you another diabetes educator type question that I get all the time. The tech analogy is wonderful, but it can be overwhelming. Especially I think when a family is first diagnosed and just trying to learn the basics, how do you kind of coach your families and educate them through, you know, they're gonna go home and get on Facebook and everybody's gonna say, you've been diagnosed for three days, get it on Dexcom get control, like, you know, get this one. So how do you get you deal with that?

 

Shaina Hatchell  25:21

That's a really good question. So one thing that we used to do so before working our children's national I worked at Children's Hospital of Los Angeles as a diabetes educator. So I have been on both the West Coast and East Coast with diabetes education and one thing that is the same as that, you know, for someone who is newly diagnosed if they want to start to look into technology, they have had to have been living with Type One Diabetes for a minimum of three to six months, give or take. And so that was kind of like a thing at Children's National but we've been actually just made a change where, of course what for insulin pumps is still three Next month, because you really need to know the basics before you can hop on to that kind of technology because it's man made. And if an insulin pump fail, you have to know how to jump right back into your manual mode. And so for that one, we still make it the same. And we tell the mat at New onset, like, Hey, you know, I know you might read some things about insulin pumps, but this is definitely something that we would discuss further with you, after your first follow up appointment with your endocrinologist. And then even then, you know, you have to have a conversation with them. And they may not think it's time yet, because honestly, influent pumps is a lot more work when you think about it and making sure that you understand again, how that pump works. And also remember, you know how to do things in manual mode, just in case things don't work with the pump, but as far as continuous glucose monitors, what we've started to do is really introduce it at New onset. If the family is really interested in it, or they know someone that has a CGM and they've already heard about it. Then we will introduce it It'll tell them that it was linked to them things. And the family then is calling every single day. So we might start the process of them getting a CGM at new one set. But of course that took time insurance has to approve it. There's so many different steps. And then after it's finally approved, and it's sent to the home, we have been talking to them every day on the phone. So if they had more questions about it, they have plenty of opportunities to discuss it with a nurse practitioner who was also looking at how their blood sugar's have been. And then once they receive it, they have to go through an entire class, either myself or another CDE. We will do a class with the family before they put it on, and really teach them everything about the CGM.

So I just think that those technologies take a lot more education a lot more understanding in the very first day is always sounds great for families, but then once they start realizing how much more work is entailed with it, how much more they need to know about it. They either decide to go ahead, let's continue move forward. Or they might say you know, nevermind. The other thing is like the kids usually don't Feel that great and it sounds good while they're in the hospital because it sounds like something that'll take away them having to do finger sticks. But when the child is actually feeling a lot better realizes that this is a device that's going to be on their body for days, sometimes, not all of them. But sometimes the kid decides that that's not something that they're ready to do yet. And that's okay to sort of make sure I always tell families like, this is not like if you decide to start the process of getting a CGM. That doesn't mean that you have to wear it, it doesn't mean that it becomes the only way that you can do things, you know, the manual way we've taught you if you have your meter if he or she decides that they don't want to have that on their body, even if they've had it on for three months, and they just say, you know what, I just really don't like it. Take it off. It's no love loss. It's totally okay. And they can always come back and visit it later. If they like.

 

Stacey Simms  28:50

Going back to your book. I know that you've been in pre sales for a while and you've got some reaction to it. It's about to kind of go as we're speaking it's about to go live. What has that The reaction been hasn't been what you hoped.

 

Shaina Hatchell  29:02

It has been beyond my hopes and dreams. When I created Cheyenne learned, and I thought about combining my love for poetry with my love for diabetes education, I thought it would be more of like a local thing. I thought that people that knew me were kind of spread the word around the DMV area, maybe you know, Delaware, which is where my family is that Philadelphia, which is where I'm from, I thought those areas would take a liking to it and it would kind of just be there but it there are people that I have never met. There are people all over the world that are buying this look at pre sale and sending mixed messages and are so excited and that just makes me feel great and not for the sales or anything like that. But truly because I know that Cheyenne learns about insulin is going to be a book that really reaches people and really accomplishes my goal far better than I do. Did it to do so. I'm grateful. I'm really grateful and excited.

 

Stacey Simms  30:04

So let me ask you and you mentioned right at the beginning of our interview, that Shia is the name that you were planning for your baby and you had a miscarriage. We don't talk about miscarriage at all. Right. And I was not going to ask I feel like I'm prying but I also you named the character after her. So I hope you'll forgive me for being nosy or prying. But was it hard to make that decision to use that name that means so much to you? Tell me just a little bit more about that if you don't mind?

 

Shaina Hatchell  30:34

Oh, I don't mind at all. I am so open about having this conversation. And even in the acknowledgments, I mentioned that she's you know, shy is now my rainbow baby. She's born she's here. So for me naming the book shy learned was like this is it I have talked about since I was young that like, Oh, I'm gonna name I could show you because my name is Shaina. And it just felt right back. About his name Shia for years for years and so when I found out that no I was with child I was pregnant. I was like, Oh goodness Shia and it for me, it didn't matter if it was boy or girl like the meeting was shy like this is it. And so once I miscarried, I was actually in the middle again of writing the books in like poetry form and so it just kind of like dawned on me like, Okay, this is it. This is how Shai is supposed to be born. This is how my baby is supposed to be put into this world, I kind of felt like it was destiny, that shy of the birth a different way, you know, and so now, Shia lives forever. And I think that that is so awesome for me. And I'm just I'm excited about having another way of bringing forth this name that I've held on to for so long.

 

Stacey Simms  31:51

This is not a show about pregnancy or miscarriage, but at the same time, I can't pass on the opportunity. You have found a way To deal with something again, we never talked about it. And I know that women listening are relating to you. So I have to ask, do you have any advice for somebody who has gone through this and hasn't hasn't said anything or doesn't know what to do with all this emotion?

 

Shaina Hatchell  32:13

I think that it's all about, you know, making sure that you talk about it. But you know, think of healthy ways to get those emotions out. It's, it's different. It's definitely a feeling that I never thought I would have, you know, feeling sad, and then you're like, can be a little frustrated. There's still grieving process that you go through, you know, regardless of what how far along you are in the pregnancy doesn't matter when you know that you were going to be bringing life into the world and then you know, it doesn't happen. It can be an entire grieving process. So give yourself time, be kind to yourself, love yourself. Let your family love you know, those are all things that made the difference for me and allow for my coping to be one that turns in to something so beautiful. And so for me, it was just like, you know what, being kind to myself and letting my family and friends be a part of my journey of healing through this. And it's been great for me, I just say, you know, tap into yourself tap into your loved one, and you will make it through. This is not the end, you know, you can absolutely a lot of people feel like once they miscarry that they will never have children. And that's not true. You know, our bodies can do amazing work, and it will happen for you. Don't give up. Just be kind to yourself.

 

Stacey Simms  33:33

Be kind to yourself, indeed. Hey, you have already mentioned I always ask people what's next? You have already mentioned that this is a series of books. Yeah. What is the plan here? So when it you know, is there another one in the works? Is it already planned out?

 

Shaina Hatchell  33:47

Yes. So you this is exclusive right here, this is elusive. So there are actually two more books that I already have in the works. I'm going to of course release them one at a time. So the next book is going to be Shai learns about home management, and Shia is going to meet her very first friend. And her friend's name is Trevor Garcia. And Trevor is going to have type 1 diabetes as well, Trevor will have been diagnosed earlier than her. So he'll have diabetes since he was three years old. And they're going to meet at her first clinic visit, the first follow up in the waiting room. And the families of course, are going to connect, and they're going to talk about some of the things that they've been doing in the home. So the very first book again, I'm just going over the journey through being diagnosed, I don't yet start talking about the treatment, right, the whole management, that aspect of it, so I'm gonna give that in the second book. And then the third book, I'm like, super excited about the third book. I'm excited about the second one, but the third book, I'm going to be introducing type two diabetes into the series, and it's going to be Cheyenne learns about type two diabetes and it's going to be shy and meeting her bye babysitter so the family is going to need a babysitter. And they're not going to be wanting to trust just anybody right because Ryan needs a lot of care and so they end up getting a young lady as a teenager by the name of Kenny and Kimmy is going to have type two diabetes is going to have had been on you know, for favorable influence therapy but has been doing really well with eating healthy and exercise, lifestyle modifications that she's going to be on just like basal insulin and Metformin, and she's going to teach Shai about the difference between her type one diabetes and you know the type two diabetes that she has. So I'm really excited about introducing Kimmy into this Shire learns world and starting to kind of merge type one and type two diabetes so that we have an understanding of each other. I've heard a lot of mean things being said about type two diabetes, like you know, they don't have as much work or things like that and i i Don't like that that is kind of like the conversations that are had or that they're even compared in that way. I think it's time that all types of diabetes, you know, what the the main two types of diabetes really start to understand each other a little bit better. So I'm really excited about that one.

 

Stacey Simms  36:14

Oh, that sounds fabulous. I'm with you. I think we're all stronger together and a lot of misunderstanding. Shaina, thank you so much for spending time with me. I am so excited about this project. I know how important these books are to families. And I'm thrilled that you've done this and it looks beautiful. So again, you mentioned the illustrator at the beginning, kudos to her as well. But thank you so much for joining me.

 

Shaina Hatchell  36:35

Thank you so much for having me. I really enjoyed having this conversation with you today. And I am super excited for everyone to continue to see what Shailene has in store.

 

Announcer  36:51

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  36:57

More information about Shia learns and their whole story. I'm gonna link this up in the show notes. The episode homepage is always at Diabetes connections.com. There's also a video that she did with jdrf. I'll link that up as well, really nice explainer. She did a live on Facebook a couple of weeks ago. So if you want more information, we will put all of that there as well. And right now her book is not on Amazon is my understanding, but still shipping from her website. Again, Diabetes connections.com. For all of the details.

tell me something good in just a moment. But first, diabetes Connections is brought to you by Dexcom. It's hard to think of something that's changed our diabetes management as much as the Dexcom, share and follow apps. The amazing thing to me is how it's helped us talk less about diabetes. That's the wonderful thing about share and follow as a caregiver, a parent, a spouse or whatever, you can help the person with diabetes managing the way that works for their individual situation. Vinny and I have had multiple conversations over the years about how to use share and follow what you know what works best for us when he was nine. It's a lot different. When he is 15 and these conversations really help us have fewer conversations if that makes sense. You think Dexcom internet connectivity is required to access Dexcom follow separate follow app required. learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

All right, we have some terrific Tell me something good stories. If you've got one, you can always send it to me through social media or Stacey at Diabetes connections.com and Mandy writes in hi Stacey, I have something good to share. My type one daughter Maddie entered high school this year and she made the JV cheer team. She is beyond thrilled and excited. me I have to say I'm a bit nervous considering our current pandemic situation and in type one and managing the ups and downs of physical exertion on her blood sugar, but I'm also excited for her to have this experience safely. Have a great day. Mandy, thank you so much. And I hear ya you know, no easy decisions, the stays, but she sent me a picture of Maddie. I asked for cheerleading picture and it hadn't started at the time. So hopefully Mandy, you can send me another one and we'll do a follow up in the Facebook group because I'd love to see that.

I do have a true confession sort of thing about cheerleading. And this is kind of embarrassing, but I'll tell you anyway, when I was in high school, I tried out for the JV cheer squad. I was a freshman or sophomore year. I don't remember that. But I was in high school. I can't do and I couldn't do at the time split, a cartwheel, and anything that required cheerleading skill. It might have just been my school, but I think it was also the time. It truly wasn't the incredible sport that it is today. Did I make the squad? Absolutely. Was I captain of the JV team? You bet. Why? I don't know. Looking back. I think it was just force of personality. Because it certainly wasn't my skill. I had fun but I was also on the swim team all throughout high school and it was just a little too much for me to do so children was one and done but it was a really fun experience.

Another Tell me something good comes from bond Who says here's my new meow Miss Charlotte and posted a picture of her cat. She said I needed a companion doesn't alert like my dog Sammy could but it is love funny that cat is beautiful. So welcome Miss Charlotte and if you want to see these pictures, you can go to Diabetes Connections, the group in Facebook, if you have a Tell me something good just send it to me You can post there or send it to me as I said at Stacey at Diabetes connections.com

in innovations this week, last week, we talked a little bit about listener made hacks. But this week is all about the pros. I want to tell you about FDA approval and some new studies about hybrid closed loops.

 

big announcement for Medtronic recently FDA approved the mini med 770 g for people with type one diabetes down to age two and it lets caregivers See real time CGM and pump data this is on the smartphone. Interestingly, I didn't think this made a big splash when it was announced last week, I would have thought that a share and follow system from Medtronic would have made a bigger punch through of the news that we've been hearing lately. Maybe I am missing something. The whole system is the pump, The Guardian sensor, three, the mini med mobile app, and it is compatible iPhone and Android and the Accu check guide link meter with Bluetooth and that if you talk about the mini med 770 g system, that's what you're talking about. So I will link up more information about this. They are taking orders already for this system. So if you're a Medtronic person or want to learn more, I've got information in the show notes.

Another system already approved, but more information about was in the news recently as well and that is the Tandem control IQ for younger children. So this study was for kids ages six to 13. In this study, they spent about three tene hours in range, which is an average gain of about two and a half hours after four months of the study, which was supported by the National Institutes of Health and published in the New England Journal of Medicine, there were also no severe cases of low blood sugar and there were no cases of decay. The city basically confirms what came before because the FDA has already approved a control IQ for kids as young as six years old. And again, more of this study in the show notes as well.

Doesn't really matter how high tech the pumps are if we cannot afford the insulin to put in them. So I'm always on the lookout for insulin pricing stories. This one is not about fast acting, which would go in the pump. This is about a lower priced insulin that is basically a knockoff of Lantus. I never know how to pronounce these new insulins. I think this one is pronounced Semglee. It was launched here in the US at the end of August, and it will cost nearly three times less than the list price of Lantus. DiabetesMine points out and I'll link There article that this is the first time in a decade in more than a decade that the United States has any insulin with a list price lower than $100. I should note that is for a box of five pens, so it's $100. For five pens, it's not $100. For one, I really want to make that clear.

At the same time, little editorial. I mean, how much does it cost to make So while we're celebrating a lower price, and a lot more work still needs to be done and there's a it still remains to be seen. If the pricing changes, right? Will the other long acting insulin prices come down? Or will simply price go up? I know I sound cynical if you're a newer listener, I apologize. But it's been a long time since we've had any actual good news in this so I will wait to be seen. I would like to be impressed. So let me know if you buy Semglee if you're if your insurance covers it, if you have experience with it. I would love to know how it works, how it compares to Lantus. I'm sure we'll hear more about that it gets out into the real world and what the price actually turns out to be when you go get it at the pharmacy.

So let me know, if you have something for innovations. It can be something as complicated as these large studies and approvals. Something as simple as a hack that you do something that you have created to make your life easier with diabetes, definitely let me know you can email me or you can drop into the group or just ping me anywhere on social media.

 

Before I let you go, I mentioned at the beginning of the show, couple of diabetes events coming up that you'll want to make note of TCOYD is having a big virtual conference in October, take control of your diabetes is a terrific conference. It was mostly geared for adults with type one, I went to one of their in person conferences A while back, but they have added more for parents of children with type one. So something to look into. If you fall in either group, I highly recommend TCI D it's also for people with type two, and I think we just could use more events that crossover and really help the entire diabetes community so kudos to them Plus, they have so much humor that they Using their presentations, really great people and friends for life, which usually has a conference in the fall in Falls Church, Virginia, they have moved that is this virtual Of course, it will be in December, I will link up more information about both conferences at Diabetes connections.com on the episode homepage for this particular episode, but definitely check out friends for life, they did a terrific job of their large their big, big July conference making that virtual, this more regional conference, although this year, it's probably worldwide because anybody can join in virtually, but it is a smaller scope. It's not gonna have as many days, it probably won't have as many speakers, but I'm still learning more about it. And I hope to take part in that as well as a speaker or a presenter, but I'll definitely go as an attendee. So check that out as well.

All right, thank you to my editor, John Bukenas from audio editing solutions. Thank you so much as you listen, I really appreciate you being here. I'm Stacey Simms and I will see you back here next week. Until then, be kind to yourself.

 

Benny  46:04

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

 

Transcribed by https://otter.ai

Sep 5, 2020

What do you use to treat lows on the go? One of the newest options is a flexible necklace, filled with 15 grams of fast-acting glucose. The Thrive Glucose Gel Medical Alert Necklace is easy to take with you, rip off and open if you need it. The idea came to first responder Kris Maynard after his own severe low had to be treated by paramedics. His family had tried to use the "red box" emergency glucagon kit but missed a vital step.

More about Thrive Necklace from Glucose Revival 

Kris also shares that one of his teen sons has been diagnosed with type 1 via TrialNet and explains how their family is coping with that knowledge.

Listen to our first episode with Kris when the necklace was a prototype in 2018

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

New segment this week! Innovations – focusing on hacks and tips and tricks to make our lives easier.

Happy Bob App on Facebook 

And Tell Me Something Good!

Join the Diabetes Connections Facebook Group!

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

Sign up for our newsletter here

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Episode Transcription

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by 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.

 

Announcer  0:20

This is Diabetes Connections with Stacey Simms

 

Stacey Simms  0:26

this week, what do you use to treat those on the go? One of the newest options is inside a necklace. The idea came to first responder Kris Maynard, after his own low had to be treated by paramedics because his son didn't know how to mix up the glucagon correctly.

 

Kris Maynard  0:44

Why am I not carrying this for something that we know that works, and as an EMT, for 100% of the calls that I've been on for low blood sugar 100% of the responses have always been glucagon is just too much and it expires,

 

Stacey Simms  1:00

we'll talk about Kris's solution, the thrive necklace, and his son recently was diagnosed with type one. He shares that story

new segment this week innovations, focusing on hacks, tips and tricks to make our lives easier and tell me something good. 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 on. You know, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I am your host Stacey Simms. My son was diagnosed with type one right before he turned two back in 2006. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and radio and TV news. And that's how you get the podcast.

Quick birthday shout out to my mom. If you are listening today. This goes live on September 1. It's My mom's birthday. And she had a great line recently that I wanted to share with you. I was talking about how amazed I was with control IQ. We traveled back and forth from New Orleans recently to drop my daughter off at college. And Benny came with us. We rented an RV. I told this whole story last week, but it was basically you know, 11-12 hours in the car there. Same thing on the way home. And if you've done a long trip of any kind, you probably know that you need to raise your basal rates. We have done lots and lots of car trips. My parents are in Florida, we're in North Carolina, they spent the summer in Delaware. So we're all over the place. Except, you know, in the times of COVID, where we haven't traveled at all this was our first trip. Gosh, since everything started since March, probably but we've always had to raise Benny's bazel rates at least 50% that may seem like a lot, but he's very active kid and you know, sitting still, we really needed to increase basal rates by quite a bit over the years.

And of course now with control IQ, we don't change them at all and it does all of the work for us. I was absolutely amazed. For the two days that we were on the road. I only grabbed a screenshot of our trip there. I didn't look on the way home. But he was 84% in range for that time with an average glucose of 139, which I will take hands down any day, which it would translate, I guess to a one see if like 6.4 or 6.5. I mean, it's only two days. But that's if you're if that's how you look at the numbers, that's what you would get. Now, of course, when we got to the hotel, he fell asleep and didn't have insulin and his pump. He wasn't in my room. He was in my husband's room, so I'll blame them for that. I wait a minute. I know that. Nope. We got two hotel rooms. So I stayed with my daughter. My husband stayed with Benny and it was kind of nice to just have it was two days that we stayed there and it was really nice just to have some time alone with my daughter. But yeah, that's that sounded weird about the separate hotel rooms.

So that 84% range didn't last for another 24 hours but it was pretty close. I mean control IQ once you put insulin in the pump control Q does some incredibly heavy lifting for us. I was telling my mom about this, he was texting her about how great it was going. And she said, quote, sh—y disease, great technology. And I said to her, you know, I'm gonna send that to Tandem, because I'm sure they'd want to use that slogan. Anyway, thanks, Mom and Happy birthday to you.

We have a lot to cover. This week, I've added a new segment called innovations which will be coming up after the interview.

So let's get to it. Diabetes Connections is brought to you by One Drop, and One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, compact, and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to one drug 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 drug plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doc Visit your personal coaches always there to help go to Diabetes connections.com and click on the One Drop logo.

I met Kris Maynard more than two years ago, it was July of 2018. We did an interview on the floor of the friends for life vendor area. I mean, you know what I mean? on the floor of the vendor area, that big open area, we were sitting at a table, but doing the interview various how I realized my microphones were not meant to be held. I will link back to that first interview, and you will hear a lot of that (microphone noise). That's why I bought microphones standards.

But Kris Maynard's product that he brought to friends for life in 2018 was the prototype for what's become the Thrive Glucose Gel Medical Alert Necklace. He was there to get feedback, see if there was a need for the product. Kris is a first responder who lives with type one. At that same conference. His family went through trial on that testing. One of his teenage sons was found to have the markers for T1D, we've got a lot to talk about with Kris Maynard. Kris, thanks for coming on with me. It's great to talk to you again. I can't believe it's been two years. How are you?

 

Kris Maynard  6:11

I'm doing good. It's I'm excited to be here.

 

Stacey Simms  6:14

So much has changed. And I want to talk about not only your product and your family, there's a significant change there as well. But you caught my attention recently, because it looked like you were on Mount St. Helens. Can you tell me a little bit about what you've been doing?

 

Kris Maynard  6:29

Yeah, well, it's something I've always wanted to do. I mean, it's really a way that I really wanted to be at a test or product. And I've learned over the last couple years, how much I love diabetics. I love being around other people that's living with the disease. So I wanted to be able to just challenge other diabetics to join us into making that hike. And I mean, it was something that physically was the hardest thing I've ever done in my life. But at the end of the day play it was so enjoyable. absolutely loved it. How long

 

Stacey Simms  7:01

was it?

 

Kris Maynard  7:02

round trip? It was a total of about nine to 10 hours.

 

Stacey Simms  7:06

Now pardon my ignorance, but when I think of Mount St. Helens I only think of I think like so many people. I think of it as a an active volcano.

 

Kris Maynard  7:15

Yeah, yeah. Okay, just make sure I'm not wrong. No, you're exactly right. 40 years ago is when it exploded here in Washington State. And we live about five hours away from it, and it just covered our city with ash. And so I was I don't remember five years old or so at the time. And I just remember wearing the masks really, of what we see being worn around today.

 

Stacey Simms  7:41

I'm a child of the 80s I remember it's one of the the significant news events of my childhood like when they say what do you remember when you were a kid? You know, that's one of them. So living around the area, and again, pardon my ignorance, but people are allowed to climb now and you can go up there, there's no restrictions,

 

Kris Maynard  7:56

correct. But you need permits to go there. We actually bought Tickets before co started because in April's when they start selling the permits, and those permits sell out within the first day or two. And so we got ours then to where they only allow 100 people to go up per day. And so it just happened to be that last week was our magical day.

 

Stacey Simms  8:22

And you had a look at the pictures. You had young people, you had diabetes educators, was almost everybody in the group, part of the diabetes community.

 

Kris Maynard  8:30

Yes, well, the most encouraging thing to me was two things is one person during the first mile was ready to call it a day. It was just too complicated in that first mile, and we'd kind of just gathered around and saw where she was struggling and she continued on was able to finish it, which was amazing in itself because when we look back, that first mile was 100 times easier than the rest and then 13 year old who's got type one. And I just physically think how hard and how exhausting it was for me. And to think that that 13 year old, was able to do it, because he had his struggles along the way as well. But for him to be able to enjoy that with his dad was just, I mean, encouraging and motivating. For the rest of us. It was amazing that he was able to finalize that exhaustive day.

 

Stacey Simms  9:29

Did anybody need the thrive necklace,

 

Kris Maynard  9:32

three people used it. In fact, the 13 year old ran out of supplies. That was the last thing that he had on the way back in about two and a half miles left, which was amazing because the cell service on that mountain was better there. And sometimes in the some houses or buildings that we go in and out. So he texts me saying, Hey, we just ran out of supplies. I'm worried for my son. Who just ran out of his food, his drinks and everything else. And so he said he just used the necklace. I don't know what his number was, but and then afterwards, he said it bounced back up to 157. But there was also other problems that he was also going through between the cramps running out of water. So it really wasn't about the necklace. It was being with other diabetics making that climb.

 

Stacey Simms  10:28

Well, yeah, and I guess that's a good point. It's a good place to run out of supplies. If you're surrounded by people who also have their own. I assume that they shared with him or he got down.

 

Kris Maynard  10:37

But I mean, by that time, we were separated, we were actually done. And so I we had to drive back to the finish line. And a friend of mine that was with me, I couldn't make the trek back because my legs were just cramped up and stiffened up and the buddy of mine who's in better shape, ran that last two miles to be able to get supplies. So, the buddy was amazing. He was the former firefighter. And another person was able to call 911, just in case, and then to see him walk that finish line to where you wouldn't have noticed that he was tired at all, or that his legs were stepped up at all. So yeah, I mean, it was fun to be able to embrace at the end and just cheer him on. And that's really beyond seeing him at the top of the mountain and then seeing him finish no one the struggles that he went through.

 

Stacey Simms  11:30

Alright, let's talk about the thrive medical alert necklace. Give me your elevator speech. What is this? Yeah,

 

Kris Maynard  11:37

well, it's funny because when I saw it a couple years ago, at the friends for life conference, really still at that point, it was just an idea. And we needed to figure out if it was something that was wanted or needed on the market that kind of helped formulate along with messaging that we're going through with other diabetics on now we need to make something out of it. And so learning that 80% of the diabetics Don't carry glucagon. And from the EMTs perspective 75% of the EMTs cannot administer glucagon can't give injections or can't give IVs. And so I look at it from the EMT side and from the diabetes side. So really the elevator pitch for us is we have the only wearable product to be able to help with the most common issue that diabetics face which is low blood sugar by using what EMTs use, being able to use it for any level of low blood sugar from a low to a severe state.

 

Stacey Simms  12:35

No, let me just clarify that because I've always confused when I hear that one of the EMTs do how do they treat low blood sugar if they come across someone who needs that kind of help?

 

Kris Maynard  12:44

Well, I'll take you from a time that I was unconscious camping with my kids is that they take the glucose gel, bring it and rub it on their finger and just massage it on the gums to become absorbed. And it was funny because that But it happened to me. I've administered it many times throughout my career, but I just never thought of carrying it myself because we always had glucagon. Well, that time that the ambulance was called for me, my son administered the glucagon for me called 911. What I thought that he knew was how to properly put it together. He didn't mix the two together. And so that was our failure on teaching him. But that's when I thought, why am I not carrying this for something that we know that works, and as an EMT, for 100% of the calls that I've been on for a low blood sugar 100% of the responses have always been glucagon is just too much and it expires. And so at that point, we're just thinking of a cheaper alternative that's really easier to find.

 

Stacey Simms  13:53

So what was the reaction when you went from idea to product because when I last talked to you, we're not shipping as He said this was something more of a concept. What was the reaction?

 

Right back to Kris. But first diabetes Connections is brought to you by Real Good Foods, introducing real good entree bowls, real ingredients, high protein, gluten free and low carb. So what are they're talking about here they mean Mongolian inspired beef, lemon chicken, lasagna, chicken. Real Good Foods is here to make delicious foods. We feel good about eating. And by adding these entrees, you can really see where they're going here. They want to make nutritious foods across every meal, snacks, even desserts, but they're delicious ice creams readily available at the local grocery store. We can get our products at the Harris Teeter, they have them at Walmart. Now not everything is in every store so you can find their guide. Just go to the website. You can even get a great coupon right now. And you can order online for everything that they've got. Find out more about Real Good Foods. Just go To Diabetes connections.com and click on the Real Good Foods logo. Now back to Kris and he is answering my question about the first reaction he got to the thrive necklace.

 

Kris Maynard  15:14

overwhelming. Because again, I was thinking and an idea that day worked for me. And that's really where it was going to go to until my endocrinologist came back and said, You ought to make that available to all diabetics because you don't know how many or who you can help. And so that's when we took it to friends for life after that, and then seeing the reactions of people touching it. There was fun to see, in really all of this. The most exciting thing for me is being able to meet diabetics because before I went to that conference, there was only one other diabetic at that point that I've ever met or known. And now since then, I've met thousands. Each one of them. I get excited to meet because I love hearing their stories. I love seeing what works for them. And I love being able to share how we can help them as well.

 

Stacey Simms  16:07

So tell me what the necklace actually is. Can you describe it because obviously, this is a podcast, we're not looking at it, although I will link up the website so people can see what it is,

 

Kris Maynard  16:15

yeah, thrive glucose aid. It's implemented as a medical alert necklace. And as it's pulled off, I mean, it's held on by magnetic connectors. So it can really I just say rip it off, and then it becomes uncapped, like a toothpaste container. And it's just squeezed out. And you can put the tube right onto the gums, if that's the state that the diabetic needs to be able to get the help. Or I can just take it off and put it in my mouth and really just squeeze it out myself to just get my blood sugar back up.

 

Stacey Simms  16:48

And when you say it's also medical alert, it's got the medallion on it. Tell me about that.

 

Kris Maynard  16:52

Well, I went through a two year process, we put the blue circle on it as the symbol of diabetes because I wanted people to be Got to recognize it knowing that this is for diabetics to be able to help diabetics. And I mean, it took me two years to be able to get permission to be able to use that from the International diabetes Federation to whereas on the backside, is where it says type one diabetes or diabetes, so that again, it signifies if an EMT or someone looks at it, if they don't recognize the blue circle, they can see that it is a person with diabetes.

 

Stacey Simms  17:26

I know you've heard this, so it's not criticism. But what do you say to people who tell you? Look, Kris, this is great, but I can just throw some Smarties in my pocket. Or, you know, I've got the icing with me, what do I need this for? I wouldn't argue with that at all.

 

Kris Maynard  17:43

Because I mean, when I learned that only 58% of diabetics carry something to treat with hypose that concerns me that concerns me that 80% of the people don't carry glucagon. So it's that 80% that I'm scared for and I want to To help if people can eat something, or drink something, that's what I want them to do. Matter of fact, if they're conscious enough to be able to take something else, we don't want them to use the necklace because there's more cost effective alternatives. Matter of fact, with me, I carry a, like a eight ounce juice really wherever I go to where I'm saving the necklace for my wife, kids or someone else to where if I can't administer it to myself, they know where to find something. They don't need to go look in a duffel bag, a drawer, a car, wherever it might be. They know where to find it, they can rip it off and now administer it to me. Is it refillable? It is and that was another process through our FDA attorney from the get go she said it cannot be bought. Why is the question

 

Stacey Simms  18:48

in the way I did you heard me like bracing. Can you kind of Yeah, because I remember it couldn't be at the time but

 

Kris Maynard  18:53

yeah, it took about six months to be able to figure out that on being able to have them Make it refillable, because from the get go when we initially started about, we wanted it to be refillable to be more cost effective for the diabetic. So that was hurtful news when our FDA attorney told us that it cannot be and then once we figured out how to make it refillable, then we got back on track with what our goal was.

 

Stacey Simms  19:22

So while back, you were making these available for healthcare providers, and now I see you're making them available for teachers. Yeah. Tell me about these campaigns. How did you decide to do this?

 

Kris Maynard  19:34

It's funny because you give me the chills when I hear that the health care workers as soon as COVID started, I'm all about the diabetic from the business side. I don't look at it, unfortunately, and I hate to admit that I don't look at it from the business side. I've never looked at coming into this business trying to make money from it. When COVID started, I wanted to be able to provide a way to all diabetic healthcare workers so that they have something And just because at the time and still today, we didn't want them to have to worry about a low blood sugar at a time that they're working their tail ends off on to helping us in our country trying to get it back to a normal state. And so I mean, we ended up giving about $70,000 worth of product during about a four month period. And now as schools are starting to begin now our goal is because the lack of school nurses and and the ones who can actually help administer anything, because ours is FDA a food product. Now, teachers, principals, friends, family, anybody can help with this. If it's needed. They don't need to wait for the EMTs fire trucks ambulance crews to arrive. Now they can help administer what's within our necklace knowing that that's what EMTs are going to use anyways.

 

Stacey Simms  20:57

Alright, so tell me the secret. How are you? able to afford all of this and how can we help?

 

Kris Maynard  21:03

I still have my firefighting job. And so time if you can afford me more time, I would love it. Fortunately, we did get some good press out there. And we are able to match really one per one on what we gave away versus what we're selling. And if I can continue that match in one for one, I will do this for the rest of my life, being able to get this out there until there's something else out there that can do better. And I know there's other products. In fact, one product I just picked up and I've been in deep discussion with with xirrus because I think their company that's offering one of the best solutions for low blood sugar, or a severe unconscious with their new GE Volk auto injector. I absolutely love that product. I brought that with me when I climbed Mount St. Helens just so I can have Security so other people can have that security as well. I don't look as a business that I'm trying to compete with anyone. I just want to be able to provide something for anyone that wants to wear a wearable or to have a product to where they feel more comfortable with. And I compare it to some people like apples, some people like peaches, some people like great. And that's what we are. We're one of those.

 

Stacey Simms  22:25

I love it. It's interesting when you're talking about xirrus and the G Volk hypo pen, you mentioned at the beginning of this, that your son didn't mix up the glucagon, the traditional that red emergency box right that glucagon correctly. And so many studies show that people do not do that correctly. I went to a training, it's probably four years ago now. And I'm, you know, I'm so well educated and every year I take out the old glucagon and mix it make sure I know what I'm doing. And the CDE laughed at me because he said I was holding it wrong. I had my thumb on the back of it. So I would have actually have pushed it too early, you have to throw it like oh, throw it you have to hold it like you're throwing a dart Do not throw your look. Yeah. So I was shocked that I would have been one of the many, many people who use it incorrectly. I kind of ask you, is your son okay about what happened? I mean, I know that you probably are fine. And you know, and you've got to reassure him, but after all this time is he is he's still upset about it.

 

Kris Maynard  23:23

Oh, he wasn't upset about it that next day. Oh, great. He knew and I knew that it was an educational thing that I neglected on, leading to him. But I mean, at the end of the day, nothing happened. I was able to after I got the glucose in my mouth, everything was fine. And so fortunately, he was able to move up and move on with his day, the next day. Wow,

 

Unknown Speaker  23:47

that's great, though. How's everybody doing? Now? You've got two sons. They're both just they're both off to college.

 

Kris Maynard  23:53

Yes, one just moved out this last few weeks and the other ones getting ready to move in about three weeks. And the scary part from my end is the one that's moving across the country is expected to be a type one within the next two years. And that's really something that motivates me encourages me to try to get heavily involved with the diabetes side. There's a lot of things that I don't think being done enough for diabetes, and I want to make sure that I understand the full spectrum so that I can get him the help he needs. Because really, when I was young into my firefighter career, I lost my job for two years because of a low blood sugar. I want to make sure that that doesn't happen to him. And that doesn't happen to any other diabetics.

 

Stacey Simms  24:41

When you say he's expected to become type one. I assume you've done trialnet correct. Wow. Tell me about that experience. Had you always taken the kids through or was it something you did that you tried newly Can you can you share a little bit about that?

 

Kris Maynard  24:57

Yeah, the friends for life conference really changed. Many things about me personally, and for the rest of my life, because that conference to me taught me so much. And that's where we were introduced to trial net. And that's where we brought our kids to get tested, including my wife, she got tested as well. And that's where we found out our son had to have the indicators that he's going to be a type one at that point was within the next five years.

 

Stacey Simms  25:24

Has he shown any signs? Is there anything that you have to do now? Or is it just something that you kind of monitor?

 

Kris Maynard  25:29

No, it's something we monitor, and he could have gone through some trial testing. But we left it up to him to decide if he wants to partake in that. So really, what I do is I'll take my decks and have him wear it for a few days so I can monitor him to see if his numbers are elevated at all. And fortunately, he's a good sport about it. He still doesn't like to get poked or prodded at but fortunately he's had me to figure out the ups and downs with a diabetes. So he's up for, I almost think that he's an expert in it just as much. But getting him to really, as I say, play my game so I can monitor him and see how he's doing. So the scary part for me is when he goes to college, because now we're apart from him. And so we've been in great discussions with the school nursing program, so that I mean, I'm asking them to test his blood sugar every time that he comes in for a doctor's appointment, so that they know and he knows where he's at.

 

Stacey Simms  26:35

Are you and your wife, glad that you went through trial net, knowing what you know now?

 

Kris Maynard  26:40

Yes, whether it's good news or bad news, I always like the truth. That just helps us to be able to prepare and educate him in the process, because I'd hate to find out in two years from now, without knowing that he's a type one thinking that we could have prepped him in some way and so He's really prepped now to become a type one at any point. I love the, of what trialnet is doing and what they offer.

 

Stacey Simms  27:07

Thanks so much for sharing that. I think people worry about doing trial net, you know, they're not sure what they're going to find out, but I would want to know, so what's next for you? You go on up any more volcanoes you coming up with any other products? Or are you just trying to get your kids off to college?

 

Kris Maynard  27:22

You know, going up that mountain, I said probably a good 20 times remind me never to do this again. Because of how hard it was. But now that I'm past it, I would love to go do another mountain climb. It's weird how the mind works and how forgetful it can be once you get past something. But at this point, I mean, the the group that we're with, they are more experienced than what I'm in on the mountain climbs. They want to start doing some annually. Whether we do that or not, I don't know at this point. The fun part of this journey too is that somewhere along the line Shark Tank, found us and reached out to us and interviewed me and said, Hey, would you like to be a part of the show? And thinking immediately, I would love to broadcast diabetes on a national stage. So, yes, and so they gave me one week to make a video. And that video that we made, we shared on social media and got tons of viewership tons more than what we normally do. The hard part that we've learned from that is that they said they would contact me by whatever date that it was, and we'd never heard back so we assume we didn't make it to the show. But again, what a fun experience to be able to go through trying to figure out how to put something together answering 50 questions, getting it done within one week and a video getting it back to them.

 

Stacey Simms  28:55

So you never know they may call and now you know for the next time too. had to do that even better. But we'll keep an eye out for you. Yeah, that sounds great. And I'd love to, is that video still online?

 

Kris Maynard  29:06

Yeah, we have it on our YouTube channel. I don't think it's on the website anymore.

 

Stacey Simms  29:12

I think Listen, it's a great experience, right? And you never know, they could call. But we'll leave that video up, you know, maybe somebody listening will see it be able to pass it along to the right people you never know.

 

Kris Maynard  29:23

Yeah. And again, it really I mean, two things is one I want to get diabetes on that national stage and to the blue circle. I've been in contact with the CEOs that beyond type one jdrf and the ADA on hoping that they will just put the blue circle around their emblem, I don't want them to lose their emblem, but really, each one of them has told me that they want to brand themselves and from that from the diabetes side. That's not comforting to me, because I know outside of the diabetes community, what I've learned is that the jdrf is really known as "the Walk" And the ADA is known as "the legal". And most people don't know what beyond type one is. And I think if the diabetes community got on the same page, how much efforts we can make, because the pink ribbon for breast cancer, I mean, it took them about 15 years to be able to build up that, but the funding for that from the government agencies skyrocketed. And so that's what my hope is with the blue circles to get the diabetes community whether it's type one or type two, because the power numbers coming together, and recognizing that blue circle is what's important to me. So that the fundings there so that I mean, if one out of every three in our world is going to eventually have diabetes, now's the time to come together so that it can get the funding that it needs. So that one out of three doesn't need to get diabetes.

 

Stacey Simms  30:51

I hear you. Well, Kris, thank you so much for jumping on and sharing your story and the update with us. I really appreciate it. It's great to talk to you again.

 

Kris Maynard  31:00

It's great talking to you, Stacey. I appreciate your time so much.

 

Announcer  31:08

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  31:14

And you could find out more about Kris and about the necklace. There's a couple of different kinds, mostly about sizes there. And there is a promo code, you can find that all at the episode homepage at Diabetes connections.com. Kris is generously giving my listeners 15% off using the promo code, blue circle, and that is all one word. And I really wish him the best. It's not easy to have both your kids going off to college, certainly in a year like this. And certainly at a time when the younger one you know, they're kind of waiting to see what happens in terms of diabetes, but I'm a huge fan of trial net. I really do think as he said, you know, you want to know and I have a lot more information on the website as well. If you want to search that up. We have a very robust search box if you're new to the show. This is Episode 320. And you can search by episode type. You can search by Subject keyword or by date, and we've done a couple of episodes on TrialNet that I would highly recommend.

Alright, my new segment Innovations coming up in just a moment. But first diabetes Connections is brought to you by Dexcom. And when Benny was very little, and in the bathtub or at the pool, a kid could have spent the whole summer in the pool. I always noticed his fingertips. I mean, you know exactly what I mean. They were poked so much, they were just full of little pinprick holes. You can really see when they got wet, although I don't know if people actually know this anymore. I mean, they were like little Franken fingers. But when when you have a little kid now, so many of you are already on Dexcom so quickly, I'm not sure if you've gone through this. This is fingertips basically look normal right now. We have been using Dexcom for almost seven years. With every new iteration we have done fewer and fewer finger sticks. The latest generation the G six eliminates finger sticks for calibrations and diabetes treatment decisions. Just thinking about doing the 10 finger sticks we did every day in the past makes me so glad that Dexcom has helped us come so far. It's an incredible tool. If your glucose alerts and readings for 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.

Alright, let's talk about innovations. This is a new segment I'm starting because I have heard about so many fun things over the years that you are so smart to come up with. And I want to help spread the word. So let's start talking about your innovations. Now this segment will include everything from probably cool stuff coming down the pipeline that we hear from industry and tech companies and I really want it to include your innovations and that can be everything from the woman Gosh, I wish I remembered who this was years ago. She gave me the advice of if you're in a hotel and you have insulin in the fridge or if you're leaving your home and you have insulin in the fridge you want to bring on a trip. She leaves a shoe in the refrigerator the shoe she is going to wear in the morning So she does not forget. Now I use that but I put my car keys in the fridge. Because I'm not putting a shoe in my refrigerator. I'm not even putting my shoe in a hotel refrigerator. But I do put car keys in so that you don't forget, it really helps. You can't go anywhere without the keys. And when you get the keys, if you forget where you put them, hopefully you remember you put them in the fridge. There's the insulin. So that's the kind of stuff I'm thinking of for this segment. This week. Although I guess I just gave you one there.

I want to talk to you about happy Bob. Happy Bob is a new app. And it was created by a mom of a child with Type One Diabetes. Her son was diagnosed at age six. She lives in Finland, which by the way has the highest incidence of type 1 diabetes in the world. What is happy Bob, it is an app that connects to Apple Health kit, it streams CGM data. Now it gives you you know, stars that you can collect. And I think there's a bunch of apps out there that have tried to gamify diabetes, which really hasn't gone over that well because most people they just want to do less. They don't want collect points. Although that is a popular aspect of happy Bob, the big deal about it is that it gives you editorial for where you are. It'll say things like your blood sugar is 110. You are awesome. Or your blood sugar is 138. Your numbers today has been on fire. If I had a buddy, I'd be dancing right now. He was silly things like that. But the best part about happy Bob, in my opinion, is his alter ego snarky Bob snarky Bob enjoys making. I wouldn't say rude comments, but more sarcastic comments. And they're always changing. They're funny. It's just such a smart idea. Now I did mention that it links to Apple. I just found out that they are testing the Android app. So of course they are developing this. There's even a Facebook group I think or a Facebook page for sure. For happy Bob. So I will link all of that up in the show notes. I tried to get Benny to put it on his phone. But he as of this point is not interested although he did think that the snarky Bob It was pretty entertaining. kudos to them for doing this. I think it's fantastic. If you have an innovation like that, send me something I'll post in the Facebook group as well. You can always email me Stacey at Diabetes connections.com. I'm very interested to see what we come up with as a community. You've got some great fun hacks out there and some really useful stuff too. So let's help each other and spread the word.

 

All right, time for Tell me something good. And this one is really a nice one. We don't have any huge milestones. I don't have any marathons or 50 year diversities. These are all kind of a day in the life kind of things you'll understand what I mean. Caitlin says my tea Wendy got to have her first playdate with her best friend. Since lockdown began in March. They were so happy to see each other and only had to be reminded once to keep their masks on, which was pretty amazing to me. She writes since they are four and five years old. When we left she said it was her best date. Mike Joyce said the wild flowers on the Pacific Northwest trail are pretty great. And he sent a beautiful picture he posted in the Diabetes Connections Facebook group. Also Mike writes, I've walked a third of the trail to the Pacific Ocean from Glacier National Park. Mike keep the pictures coming. That said our six year old T1D jumped off a small Cliff into a mountain Cove this weekend. She has no fear of man, everybody's getting outside. I mean, that's one good thing. We're all spending more time outside and Shelley said the rain is finally filling up our new backyard lake. If you look closely in this picture, again in the Facebook group, you can see my four year old and his new favorite way to burn that glucose and this kid is splashing.

So if you have a Tell me something good. I think these are all great stories. Send it to me Stacy at Diabetes connections.com or post it in the group. Just something that makes you smile. I love sharing these stories. Before I let you go, I am working on a new episode. This will be out probably by the end of this week, and I'm a little nervous about it. So I really hope you give it a listen, I have a feeling. I've been working on this for a while that the philosophy of kid first diabetes second is really not working, actually never worked. So I'm going to be talking about that what I mean explaining it and dipping my toe into I think some pretty controversial borders. So I'm not asking you to agree with me. I mean, you haven't even heard it yet. I am asking you to give it a listen and let me know what you think that'll be out in just a couple of days. And then back to our regular you know, interview type episodes next week. big thank you to my editor John Bukenas from Audio Editing Solutions. A big thank you to you as you listen, I absolutely adore doing this every week. It is such a privilege to create the show for the diabetes community. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days for that bonus episode. Until then be kind to yourself.

 

Benny   39:07

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

 

Transcribed by https://otter.ai

Sep 3, 2020

It didn't take long after my son was diagnosed for someone to tell us, "Kid first, diabetes second." Benny was diagnosed in 2006, but that phrase has been around a long time in the diabetes parenting community.

I get it. We shouldn't take away all the things that make childhood fun and special, because of a diagnoses of T1D. We also don’t want diabetes to be the first thing people think about when they consider our children and we don’t want diabetes to dictate every decision we make.

But the more I think about it, more I think that phrase misses the mark.

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

Join the Diabetes Connections Facebook Group!

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Episode Transcription:

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 at Amazon as a paperback eBook and audiobook. Learn more at Diabetes connections.com

 

Announcer

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms   0:26

Welcome to a mini episode of the show. I'm your host, Stacey Simms, and I'm really glad that you joined me for this now these episodes I do occasionally are more. I'd call them more editorials. I do interview shows week by week if you're a longtime listener, you know that but this year I added in these mini episodes these minisodes just me, I am not a medical expert. This is more mom to mom advice. Just from my experience as a longtime parent of a child with type 1 diabetes, what I've learned and what I think can help. My son was diagnosed with type one when he was 23 months old.

 

Stacey Simms   1:00

that was back in 2006. He is now 15 and a sophomore in high school. Oh, my goodness, he is he's very comfortable with diabetes is very confident. He's very independent. And while we are far from perfect, we are doing a great job according to our endocrinologist, and that's all I really need to hear.

This subject has been on my mind for a while. So let's just get into it. I want to talk about the saying, kid first, diabetes. Second. It's been around our community for a very long time, probably longer than I've been a part of the community almost 14 years now. But I just don't think it works. It doesn't work for me. I don't think it works for anybody. So let's talk about it. What is kid first diabetes second all about? I think we know what it's supposed to be right? You hear this most often right after diagnosis. And it means that you know, your life shouldn't change that much.

 

Stacey Simms   2:00

From what it was before, or you know, you shouldn't take away all the fun things that make childhood childhood. And we don't want diabetes to be the first thing people think about when they consider our children. And we don't want diabetes to dictate every decision that we make. Now for some people, kid first diabetes second means letting them have a giant Sundae, or go to a pizza party. Now it doesn't have to be all about food. I did say it to myself years ago when I let my son go to regular sleepaway camp, not diabetes camp for two weeks when he was eight, and he has gone a month every year since then. So I've said that to myself, right kid first, diabetes, second, let's do this. But the more I think about it, the more I think it misses the mark. Kid first diabetes second, isn't right. It seeks to separate the diabetes from the kid, which is impossible to do. Or maybe it's not impossible, but it doesn't sit right with me.

 

Stacey Simms   3:00

Here's why implies that you're sort of cheating on diabetes. We're going to put diabetes aside, we're going to put it second. So we can do this other thing that every child should be able to do. Put the kid first, what we're saying is that kids with diabetes, shouldn't be able to do that shouldn't be allowed to do that. You're just letting this be a special case, because it's fun. And it's about being a kid. It's as though we're saying diabetes can't be part of a real childhood, a good fun, a wonderful childhood. take it one step further. And we're actually implying that diabetes can't be part of a good fun, wonderful child, or ultimately a person. It sounds dramatic. I know. But I really don't think it is. Looking at this a slightly different way. I talked about it just a bit in my book, the world's worst diabetes Mom, I use the analogy of the Hulk there. Alright, so when Benny was very young and ready

 

Stacey Simms   4:00

He was diagnosed just before he turned two. We couldn't explain to him exactly what was going on, you know, you know, when your blood sugar is high, you can be so grumpy, you can be unreasonable not that a three year old is always reasonable to begin with. But it was so hard to explain to him what was going on. And it wasn't until, I mean, really till about age four or five, that we were able to start working on a few strategies to help and one of the best involve the Hulk. We started telling Benny that he was a lot like the Hulk. I don't have to explain to the Hulk is right, the Marvel superhero, big green guy, comic book, TV show, movies, that whole thing. Okay, so we started telling Vinny that he was a lot like the Hulk when his blood sugar was high, and he felt angry and mean. But unlike the Hulk alter ego, Dr. Bruce Banner, we said he could learn to control the big green guy. So we started by having him recognize that he was high. This was before the days of Dexcom for us, so we would just test blood sugar, and then Benny would work on removing himself from the situation. He could go

 

Stacey Simms   5:00

It was room and beat up a stuffed animal. Or he could yell into a pillow. He could sit quietly with me, he could color he could drink water, he could be mad. But he couldn't release the Hulk on other people. It wasn't perfect, but it really helped him process what was going on in language that he could understand as a little kid. So fast forward to the Marvel Cinematic Universe. And this is, of course, the movies, the Avengers movies, and we're big comic book people. We have seen every MCU movie together by family, we all have our favorites. This was really as an aside us such a fun part of our, I don't wanna say our family history that sounds very high and mighty. But my children really were old enough to see these kind of movies just as they were coming out. And now they're older and they don't want to be with us as much and we were able to see all of them together. And it was fun in between arguing about the theories and talking about the characters and we saw the last I want to say four or five movies on preview night I would get tickets on the Thursday before they were released and we always will

 

Stacey Simms   6:00

A big deal about it. So it was great. And if you're familiar with the movies, or even if you're just familiar with the character that you know, the Hulk is always struggling, but the character is right. He has two distinct sides, Bruce Banner, and the big green guy, and they work in opposition. And that's kind of what we were telling Benny right this side can't understand that side. Or you know, when you're high. You're not you. You've got to get control over that part of you. Then we saw Avengers endgame. And I almost fell out of my chair when smart Hulk showed up. I What is he? I guess he's called Professor Hulk. But whatever he is called. Bottom line is that Dr. Banner has figured out a way to embrace his Hulk side, and the two are at peace. I looked this up. Yes, I did some research into Professor Hulk. Marvel says equal parts intellect and brute strength. The professor represents banners ideal version of self. And that's it. That's my hope for Benny. Now I have to stop for a second and say I can

 

Stacey Simms   7:00

Knowledge I am saying all of this as a person without diabetes, I'm the mom, I'm not the one living it. So I understand he has to find his own ideal point. This is exactly what I'm working toward. My son can't take diabetes and pretend it's somebody else. Yes, that worked when he was three or four. But in his young adult and adult life, he can't take his bad moods and its highs and lows and push them off on the other guy. I'm of course not saying highs and lows are not real. Obviously they are, they need to be acknowledged. And they in many cases need to be accommodated for by the people around the person with diabetes. But those highs and lows are part of diabetes, so they're part of him. And if Benny is able to embrace the side of him that he sometimes wants to reject, he will be that much stronger. And that brings us back to kid first diabetes. Second, it needs to change. It needs to change in our thinking to simply kid with diabetes. So what is that

 

Stacey Simms   8:00

That mean in practice, birthday cake? Yes, that is a life with diabetes, sleep over sure that's a kid with diabetes, soccer practice without me there. Same thing. I think if we treat these events and foods, like we're somehow cheating on diabetes, or somehow separate from it sends the wrong message. I mean, think about for us without diabetes. I am not eating birthday cake every day. But I sure I'm gonna have it the next party I get to go to knowing that. Do I then have to say, woman first birthday party attendee second? Or maybe mom first mom who really needs to eat more salad and fewer desserts second, I mean, you share that right? There's that guilt. Right mom, first mom who shouldn't be eating cake second. And it's not always about food. As I've mentioned, milestones and events are very relevant here too. So if you're saying kid first diabetes, second about, let's say a trip with the grandparents, you know the older sibling when

 

Stacey Simms   9:00

The grandparents did a special trip. And then a couple years later, the younger sibling with type one wants to go insure kid first diabetes. Second. Well, you're really telling your family that kids with diabetes shouldn't be able to do that. You're just allowing it, because it's fun. And it's about being a kid. It's just being a kid with diabetes. It's not easy to change our language about diabetes. I've been saying kid first, diabetes second for years. I looked it up. And it first shows up in my blog, in 2011. But words matter how we talk about diabetes matters. And our kids are listening, even when we think we're being careful. So I'm gonna stop saying kid first diabetes. Second. That is not how I actually parent and teach. It does not work for us. And it's not how I want Benny to think about his life with type one. So what do you think? Agree? Disagree? Remember, I am the world's worst diabetes mom.

I'd love to know what you think you can email me Stacey@Diabetes-connections.com, or find me on social media, I'm linking up everything in the episode homepage. The show notes for this will be at Diabetes connections.com. You can find all 320 episodes of Diabetes Connections there. We also have an extremely robust search. So you can search by keyword by topic by date, and find whatever topic you are looking for. But I'd love to get your reaction here, especially if you've listened this far, and you're an adult with type one. What do you think about all this? The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes is available on Amazon in paperback eBook and audio book. I hope you check it out and read some reviews. It is all about our journey with type 1 diabetes, but it also features some mom to mom advice. And it gives you some suggested questions to bring to your next doctor visit that always confused me. How am I supposed to know what to ask if I don't even know what I don't know. Hopefully I can help you out there. All right, I will see you back here next week for our regular interview episodes. Thank you so much for joining me.

 

Stacey Simms   11:00

I’m Stacey Simms, until then be kind to yourself.

 

Benny   11:08

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

 

Transcribed by https://otter.ai

Aug 25, 2020

There's a lot of overlap between type 1 diabetes & celiac disease, including how hard it can be to get a diagnosis. People with T1D are thought to have ten times the risk of developing celiac and even more have a sensitivity to gluten.  Ann Campanella went for years knowing something was wrong with her little girl and being brushed aside until she finally found a doctor who took her seriously. Ann shares her story in her new book ““Celiac Mom”” and takes some time to talk to us about her story

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

In Tell Me Something Good, The Renegade Run is back and we share a bunch of diaversaries, with some interesting ways to celebrate.

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Episode transcription 

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:28

This week, if you live with Type One Diabetes, you have about a tenfold chance of developing celiac and there's a lot of overlap in the communities, including how hard it can be to get a diagnosis. Ann Campanella went for years knowing something was wrong with her daughter until she finally found a doctor who took her seriously.

 

Anne Campanella  0:47

I mean, he listened to me which was wonderful for the first time I was not nervous mom or you know somebody who was just like, she's always got some issue with her child but the child is fine. So it was just great. Have somebody listen and go Yes, you're right.

 

Stacey Simms  1:03

Ann shares the rest of her story in her new book “Celiac Mom” and take some time to talk to us and tell me something good. The Renegade run is back I'll explain. And a bunch of diaversaries with some interesting ways to celebrate.

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. 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 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.

A little bit of a different focus of the show this week in that I'm talking about celiac, which does not affect everybody with type one, but I felt like Anne's story in particular really resonated and really reminded me frankly, about our own story, I think you'll hear a lot in and that perhaps you have gone through, even if you do not have celiac if you do not have a gluten sensitivity, and that's why I want her to come on the show. She's a terrific author as well. And we talked about some of the other books that she has written.

Speaking of authors, I'm just gonna take a second, I have to tell you some news about my book, “The World’s Worst Diabetes Mom”, huge thank you, to those of you who have told a friend about this, who've purchased the book and then posted it somewhere on Facebook. Because you know, with the book tour being totally canceled this year, it really changed what we had expected. Although, gosh, I gotta say, I'm so grateful. I'm going to knock some wood here. It's just been going great. We already hit the year long sales goal a couple of months ago. I mean, it's very exciting stuff, but that's not why I'm bringing it up. I'm bringing it up because I just want to mention the book to clinic program. That is something new and different that I started earlier this year.

I had a pediatric endocrinologist and CDE certified diabetes. Educators asked me about the book because a couple of groups purchased books and provided them to their local peace endo clinic, so that a newer diagnosed family would get a free copy of the book. I mean, how cool is that? I kind of wish I thought of it. I didn't. But once I saw it, I knew we could help. I have some wonderful sponsors who have signed on to make this work. Most recently, I want to give a big thank you to Glucose Revival. They make the Thrive necklace, a big thank you to Pump Peelz, our very latest sponsor. And of course, the people who started me on this Frio and T1D3DGear, I'm going to link up all of their stuff in the show notes, please visit these wonderful sponsors. I'm looking for groups like that people who are small businesses, let's say in the diabetes community, and this is a very affordable way to get your message out. And of course, I'm now in the position where we're looking for clinics as well.  So if you’re a health care provider listening, if you see families touched by type one, we want to give you some free books, so please Reach out and let me know you can find me on social media Of course, Stacey at Diabetes Connections.com.

Okay, let's talk about celiac in just a moment. But first Diabetes Connections is brought to you by One Drop. And 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 is the slickest looking and most modern meter 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 and also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strips subscription plan, pick as many test strips as you need and they will deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes Connections comm and click on the white drop logo.

 

My guest this week is the author of “Celiac Mom” and full disclosure She's a friend of mine, formerly a magazine and newspaper editor Ann Campanella is the author already of two memoirs and four collections of poetry. Her first memoir, motherhood Lost and Found has won numerous awards. And it was named one of the best Alzheimer's books of all time by book authority.  I've known Ann and her husband Joel and their daughter, Sydney since our kids were young. Of course, I knew Sidney had celiac, but I never knew the story behind her diagnosis. And it turns out, she was diagnosed the same year that we found out that Benny had type one diabetes.

Now look, obviously everybody who listens to this show and lives with diabetes doesn't live with celiac, thankfully. But there is a lot of overlap here in terms of having to advocate for ourselves to trust our gut, no pun intended there and to transition to a new type of life after diagnosis. So real quick, just to make sure we're all on the same page here. If you don't know celiac disease is a genetic autoimmune disease. It's not a food allergy. It does cause damage to the small intestine. It interferes with the absorption of nutrients in is a serious deal. It's not a joke. I think that's another overlap that we have with diabetes and celiac that people just don't take it seriously. I was really happy to talk to. And so here's my chat with author Ann Campanella, and thank you so much for joining me. This is gonna be so much fun. It's nice to talk to a friend for the show.

 

Anne Campanella  6:19

Absolutely. I'm so excited.

 

Stacey Simms  6:22

You know, I was struck reading “Celiac Mom”, how difficult the beginnings of this story are. And I want to talk about that and how you got to where the great place where you are now. But let me start by asking what prompted you to write the book in the first place?

 

Anne Campanella  6:34

Well, you know, I think one of the reasons that this book just poured out of me was because, as you said, I don't think most people had any idea what I was living through. And, you know, you can talk about, oh, I wasn't getting sleep. Oh, my baby was not happy. She was crying, and people just sort of pat you on the head and go, Oh, you're a new mom. Everything will be fine, but writing that book was a way to go, you know, I want to get this whole story out, really for others who may be coming after me and experiencing this.

 

Stacey Simms  7:10

So let's talk about what happened early on, as I said, even having known you, and I know and I know Sydney as the healthy happy Sydney that she is now. Yes. What were those signs?

 

Anne Campanella  7:20

Oh, my goodness. Probably the first one was as a baby. She did not sleep. everybody around me who had new babies. They were like, Oh, my baby's sleeping 12 hours a night, 11 hours a night, 14 hours a night. Sydney would she would barely sleep six to eight hours, and then I could not get her to nap. And at the same time, I was caring for my mom who had Alzheimer's. So I was I didn't even know if I was coming or going. And in the beginning, she woke up like every hour on the hour. And again, people said Oh, she's teasing. thing or it's this or it's that. So that was one of the earliest signs, but I had no idea it was a sign right when she got a little bit older. Joel love to eat cereal, he pour a huge bowl of cereal so they would do the exact same thing. And five minutes later, she would be on the couch holding her stomach. In addition, I could see that she was bloated most of the time. And she just she had these teeny little arms and legs in this big stomach. And I thought, is she eating too much? You know, it was that big bowl of cereal more than she should eat. And as a new mom, I just had no clue. You know, was this normal was this not but then as she got even older, I knew that something was really wrong because she wasn't growing properly. She was basically head and shoulders shorter than all of her classmates and all of her friends would be growing in by inches and she was barely mean she was In the same clothes for like three years, so those were some real good signs.

 

Stacey Simms  9:05

You know, it's, it is obviously very different from type 1 diabetes. But we, so many people in different communities get these doctor's visits where they'll say, oh, it isn't that it's this or, you know, we don't need to check because this is just the flu or she just needs to grow into it. Or, you know, every kid grows differently. And I'm curious, I know, you heard that a lot. I did. What was the tipping point for you, though, where you finally got the answer?

 

Anne Campanella  9:33

You know, I guess I was, I was on alert constantly. And I did. I loved my family practice doctor. She was fantastic, with so many things, but she just didn't have the knowledge about celiac. And Sydney also had one of her symptoms was constipation, and that sort of the opposite of what a lot of kids have have diarrhea. So that didn't tip her off to it. Every single visit, I would ask I would talk about stuff. I was also searching on the internet. You know, day after day, when everybody went to bed for the short times that he was asleep, I'd be checking things out. But I actually had a friend who had, I think it was her niece had growing issues. She knew Sydney, she had known her as a baby, and she would hear me talk about my concerns. And she said, you know, and there is, you know, a doctor in Charlotte, who can deal with some of these things. He was an endocrinologist, and there were various factors that she felt like it might be worth seeing him. And as soon as I got that information, I was like, we are going to that doctor. And he is the one who very quickly I mean, he listened to me, which was one Wonderful for the first time I was not nervous mom or you know somebody who was just like, Oh, she's always got some issue with her child, but the child is fine. And so it was just great to have somebody listen and go, yes, you're right. If this isn't dealt with, she's going to be four foot eight. And thank goodness, he was able to rule things out. And then he sent me to a pediatric gastroenterologist who did an endoscopy. And that is what set us on the course to know for sure that she had celiac. We had blood tests done and the blood tests were so borderline that they did not show anything definitive. So that was something that was just dismissed. But when she had the endoscopy, the doctor said she had severe scarring. So even though the blood test, which everybody's like, Oh, just get a blood test, you know, you'll find out that did not give us the information we needed. The endoscopy, told us everything, and that they took samples of her small intestine. And the doctor knew from the moment he got in there and started looking. He didn't even have to wait for the test. He's like, she's got celiac,

 

Stacey Simms  12:15

obviously, look, you and I are not doctors, we can't give medical advice. Right? Every borderline blood test is not going to lead to a positive result from the endoscopy. But I think it's a great point to bring up that if you're still not certain if you know, this is something that, again, we don't have this experience. But if you get the blood tests back, even though it was borderline, did you have to push for it or did the doctor say you know, to be sure, you know, I'm curious how you still got the endoscopy.

 

Anne Campanella  12:41

I definitely had to push for it. Now, the doctor that the endocrinologist he was happy to do it. But in order to get to see him through the medical system, I definitely had to push because they were ready to just dismiss it. Which I guess you know, maybe that's the For a lot of people, but it did make me think, goodness for all this moms who know intuitively that something is not right. It's so important to just keep pushing and you know, to go for what you know, will help your child.

 

Stacey Simms  13:15

So tell me about the transition. Obviously, when you get a diagnosis, we want to help our kids, we want to do what's best for them. But I laughed out loud when I read in your book, and here's a quote from it. She says, I have never been a cook. In fact, Joelle or husband and I survived for years on a diet of microwave dinners and take out food. So a woman after my own heart, I was the exact same way for many years before I had children. I didn't cook at all really, how do you make the transition from going out for Italian food bringing home big bready subs to what I imagine was a lot of food prep and cooking after this diagnosis.

 

Anne Campanella  13:56

You know, it was horrendous. To be honest, it was so hard and I love hearing that you are not a cook either. Because you get this. And I feel like it's sort of like, God has a sense of humor. You know, I went in thinking went into motherhood thinking, well, I don't have to cook, I can get through this. And then he just turns things on. It's his head or my head. And it's like, no, you're gonna have to cook every single meal for the rest of your life and just see how that is. But how did I do it? I will tell you Stacey. It took me a good year before I felt comfortable at all. And I think I started the transition with just going oh my gosh, I have got to find something to feed my daughter. You know, I literally thought she was going to starve because I didn't know what to put on our plate. I figured out five meals. Okay, what are five meals that I can Give her that she will eat. And she actually she was starving. That was another symptom that she had. She was always starving, she would eat one meal. Five minutes later, she'd be asking for a second meal. And I'd be thinking, what is the deal? You know, am I creating a child who's going to have eating disorders because she, she wants all these meals. So we went from, I tried to find the meals that I used to pick up. Like, if it was Italian, like spaghetti, okay, spaghetti can't be too hard. And I found rice pasta and had to go searching the labels on spaghetti sauce to make sure that there was no gluten in them.

 

Stacey Simms  15:46

So we should also jump in and say this is 2007 Yeah, while it was probably better than 1987 Yeah, certainly isn't what we have now. Oh my gosh,

 

Anne Campanella  15:56

no, it's it's so much better now. You can actually go to regular stores and find gluten free food. Back then I went to the one health food store. And, and it was funny because it's health food. But basically the thing that they had most that was gluten free was cookies and brownies and cake and still defined actual meals. That was a challenge. I mean, you really had the search. And like one of the things I learned was, chicken is not always safe. It's often processed with gluten. And so for a couple of months, I was feeding Sidney chicken for several meals thinking, Oh, I'm doing so well. But she still was bloated. And as I was reading and researching, somewhere I ran across Oh yeah, chicken and there's a couple of brands that are safe, but most are not. So once I got her off of chicken, she actually sprouted that summer like three years. Four inches.

 

Unknown Speaker  17:01

Wait, I did I miss something?

 

Anne Campanella  17:02

Why would chicken have gluten? fresh chicken has a processing and it's processed with some kind of wheat flour or something that's in it. And if you read real carefully and it might be modified food starch or some other name that denotes wheat or gluten. Chicken is dangerous for people with celiac.

 

Stacey Simms  17:24

I mean, I have to ask even closer you're talking about plain old naked chicken, not chicken nuggets, right?

 

Anne Campanella  17:31

What? Chicken out like Purdue chicken is safe. But I don't even know what other brands but basically brands of chicken that you find wrapped up in the supermarket, and they haven't been cooked yet. Most of them are not safe. So if you go to a restaurant, and you order chicken, and some restaurants, they don't even know and they'll say oh yeah, things are gluten free and they're not And again, it's not a huge amount. And I should back up and say, people with celiac, it varies how allergic allergic is not really the right word, but how sensitive they are to gluten. But for Sydney and most other people with celiac, the tiniest crumb will set off an allergic reaction or the reaction that causes the immune system response. That's amazing. Who would think

 

Stacey Simms  18:27

so what were your five meals? Do you remember? I can imagine you'd ever forget.

 

Anne Campanella  18:32

Oh my gosh. Well, it's funny because we branched out since Oh, yeah. But spaghetti. Spaghetti was probably three of them. is sad to say. And when Sydney started going to school, because I'm not a cook, I would just make a huge pot of spaghetti and feed her meals of spaghetti like for lunch and it was so sad, poor child. That spaghetti was one chicken pox. pie that was like my big thing but I would make two of them at once and I could find gluten free pot pie crust for the bottom. And then I would just dump chicken and broth and vegetables into the pot pie. So it's it was not like this fantastically tasting, good tasting potpie but it was decent and Sidney loved it because she didn't know any better. And then I would roll out a crust made from like rice flour. So that was one and what else hamburgers. I could get Joel to cook hamburgers on the grill and I would just steam up some vegetables. I did have a chicken and rice meal. That was my mom's and I just changed a few of the ingredients that that's probably that about covers it maybe scrambled eggs. That was another really easy one.

 

Stacey Simms  19:54

What happened to her once she started eating gluten free you had to have sort of a big physical

 

Anne Campanella  20:00

Oh my gosh, the change was incredible. And it just, it made me feel like no matter what I had gone through, it was worth it. She went from being this child. And I didn't even know that this was not normal. But she went from this child who would hang out on the couch, reading all the time doing puzzles, being very sort of quiet to somebody who like would run around the house. She couldn't wait to get to the park. She had so much energy, her face went from this pale expression where her eyes look bruised to this sort of just a constant joyful quality in her face and in her skin. And then her growth was just incredible. She went from being so tiny to just being normal sized. She's not super tall now, but Within the normal range is five, three. And she started playing basketball. She had energy to do things. We used to take her to the park before this and like we bring her bike and she ride for a little bit and be like, I'm tired. I want to stop. She just was irritable. Oh, the other thing, the biggest thing she slept on the first day that I was able to eliminate all the wheat from her diet. She slept through the night, for the first time. I knew that. I will actually I didn't because I was so used to waking out. And I went and checked on her like, Is everything okay? But I was gradually able to sleep which was just like, oh my goodness, this was amazing. So that was that was probably the most wonderful other than it I mean, everything else was wonderful too, but to have her sleeping and just thinking oh my gosh body is working normally now. And it was incredible how quickly that happened

 

Stacey Simms  22:04

during this time and your wonderful writer and you've written about your experience with your mother and all timers disease, this was all pretty much going on at the same time was it How were you handling all of this?

 

Anne Campanella  22:17

It was, oh Stacey, I was a mess. I was truly mean I was caretaking both ends of life. And oddly, my mom and Sydney had the same sort of needs. Like I remember having to bave Sydney having to wash my mom, having to feed Sydney, having to feed my mom trimming their fingernails at the same time. And I was going back and forth. Part of the time my mom lived at the coast near my sister, and then eventually we brought her here and I was bringing Sydney with me to visit my mom. And that was a sweet time because Sydney would like To push her wheelchair around, and my mom would, you know, Pat her on the head and they could play ball and do little things like that. But it was so tough. And I think maybe that was part of what made the story hard for me because I, I was so concerned about my mom, because she was close to death for a long time. She had Alzheimer's for 14 years. And the last, gosh, seven years of her life, we kept thinking we were about to lose her, and then she would hang in there, but I feel like I wasn't really thinking straight, wasn't sleeping. Well, I was just existing. But at the same time, when Sydney came, there was this incredible joy and, you know, this new light a new life. And so it really helped balance the two I guess.

 

Stacey Simms  23:52

Your book about Alzheimer's disease is very well received. You know, you've won awards. It's a beautiful book. I know you've been kind of in that world for a while. I'm curious. When you're writing a book about your child, it's a different experience altogether. Were you nervous about sharing that story? I mean, you've shared such personal things already. I guess that's what I'm trying to get to. But when it comes to your child, it's a little bit different. I'm curious what your reaction to your own writing and sharing it about Sydney has been.

 

Anne Campanella  24:22

You are so right Stacey and I'm sure you have had the same experience. It is so different and as I was writing this, Sydney was she's now 18 but as I was writing this, she was 15 1617 and not as mature and not really wanting me to share very much so I just felt like I had to be so careful not to share things that she wouldn't be comfortable with my dash n even the book became “Celiac Mom”. Because I wanted it to be about my experience of parenting her, rather than me trying to say everything that she went through, even though I included that, and we have a place up at Lake George New York. And last summer, when I had the whole manuscript written, I read it to her out loud out loud. She's a busy teenager. And the last thing she wants to do is sit and listen to mom's writing. So she was a captive audience when we were driving up to Lake George and I thought, okay, I'm just gonna read this and this will also give Joel a chance because he's in the book to, to hear it. And it was a great time to do it because we were having sweet family time, but I was able, wherever there were any places that she was uncomfortable with, I could take them and edit them a little bit and, you know, just askers Are you comfortable with this? And amazingly, now that she's a teenager She is fine with it. And she's excited that the story is getting out and she wants it to help people. So I'm just so relieved about that. That's wonderful.

 

Stacey Simms  26:10

How is she doing? I mean, she must be very independent. I know that college doesn't look like it's supposed to for anybody. So instead of going to school, she will be virtually learning at home this year. But I imagine that no knocks on your current cooking. I don't know what's going on. I imagine that she can pretty much take care of herself.

 

Anne Campanella  26:28

Yes, she's actually learned where she can go get take out and she's sort of led the way for the family. And it's wonderful because I've been hanging up my apron and just not having to make, you know, meals that she didn't really care about. But she is doing great. And interestingly, when we were looking at colleges, in my mind, a place that was going to offer great gluten free food was like top on the list, but that was very far down the list for her. She cared about it, but it just wasn't the top thing. She had other sort of normal things that were important to her know like, what kind of programs the college offered where it was, was it a city or was it a country setting? You know how the size of it, it was really interesting going through the process of looking at schools with her and me being it's funny you call yourself “The World’s Worst Diabetes Mom”. I'm probably the most obsessive “Celiac Mom”. So I'm just watching every little thing and telling her Oh, did you see this? Or, oh, this, they didn't have any gluten free food here? And she'd be like, Mom, it's fine. You know, don't worry about it. I can handle it. And eventually I just had to believe it and trust that she could and she has really shown that she can. That's fantastic.

 

Stacey Simms  27:51

Before I let you go, any advice for families who are newer diagnosed with celiac and listening because I've got to imagine like, just like you You have already said it's a devastating diagnosis. You're so happy to know what's going on. But you really do have to change everything about how you eat and even, you know, down to household appliances, things like that. I assume, right. You have to get rid of yesterday

 

Anne Campanella  28:14

that yes, new toaster oven. Yes. I mean, we went through our cabinets took everything out and had to replace, I would basically say to take it in steps and stages because it is overwhelming. I mean, we were basically wedded to wheat, my husband and I, and to suddenly step back from that was huge, and it's really a grief process. Because, you know, every single thing in life seems like it's connected to food, and to suddenly think, oh, we can't eat our favorite stuff. We can't do this. You know if you can find support, you can find even one other person who is Going through this. For me, as a writer, I always love to read books. And I love memoirs, because they do take people through, you know, the real experience of somebody's life. So there's that. But finding a real person, a friend, once Sidney had one friend who didn't eat gluten, it just made a world of difference because she was no longer alone in it. So those are some steps as far as the cooking. There are, there are websites and there are so many more resources than there used to be. So many restaurants do offer gluten free menus, and some are safe and some are not. And I would suggest reading the reviews to make sure that people who have celiac feel safe with them. But Gosh, find somebody who can kind of hold your hand as you take those steps.

 

Stacey Simms  29:55

Well, and thank you so much for sharing your story. I really you I knew some of it having known you. But you know to hear the whole thing is just remarkable. I'm so glad you wrote it. I know it's getting a great reception. So thanks for talking to me today.

 

Anne Campanella  30:09

It is totally My pleasure, Stacey just enjoyed it so much.

 

Unknown Speaker  30:18

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  30:24

More information about “Celiac Mom” and about celiac in general over at Diabetes Connections.com. And I know as you listen, you probably have more resources to so if you're in a good celiac Facebook group, if you've got good supportive resources for us, please let me know you can post it in Diabetes Connections of the group or just message me and I'll pass it along. But I think just like there's a really great diabetes community. I know there's a wonderful celiac community as well, that can help. So I'd love to get the word out about that as well.

Tell me something good coming up in just a moment, but first Diabetes Connections is brought to you by Dexcom. And we have been Using the Dexcom g six since it came out points more than two years ago now, it's amazing the Dexcom g six is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. If like us, you have used Dexcom for many years that when you do the two hour warm up, and there's no finger stick, you know the number just pops up on your phone. It's amazing. I mean, it really is a big difference. We've been using Dexcom since he was nine years old, so it's six it's almost seven years now for the seven years in December. It just keeps getting better. The G six has longer sensor we're now 10 days and the new sensor applicator is so easy to use. Benny does it himself. He says it doesn't hurt. Of course we love the alerts and alarms and we can set them how we want. If your glucose alerts and readings from the G six do not match symptoms or expectations use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes Connections.com and click on the Dexcom logo.

 

Tell me something good. This week I want to let you know about an event. We talked to these folks a couple of years ago about the renegade run obstacle course race. This year. It's a little different on what isn't different this year. It's the renegade virtual run. This is happening in mid September the 12th to the 27th of September from anywhere in the world. You just complete the different obstacles the different run, jog, walk back in I think series of exercises, and you can complete them anytime you share your photos, your videos, it's a really neat idea. Very creative. I've seen some other things that have switched to online this year. And if people just get so creative with this stuff, you can find out more very easily. I'm linking it all up on the episode homepage Diabetes Connections.com. And when you register, or you donate or you know, whatever you want to do, they will send you all of the information including the list of exercises, so they're trying to make it super simple for everyone. This is a fundraiser as well. They raise funds to support the research that's going on for diabetes at Massachusetts General Hospital. So again, just find out more at the episode homepage.

We have a lot of diaversaries to talk about. We had a woman I'll get her in just a second, Christina posted about her diaversary earlier this month in the Facebook group, and then a bunch of other people chimed in. But the funny part about this post that Christina started, it's all about soda and or pop or whatever you call it coke. It's actually about Pepsi for her. So Christina celebrates her diaversary every year by drinking a Pepsi Diet Pepsi, a real Pepsi. It was her 14th diversity, 14 years with type one and her blog post which I will link up as well. And you can read it if you're in the Facebook group was really great because she talks about how hard it was to make lifestyle changes. And the key was really well it was her but it was sparked by an endocrinologist who didn't scold her or make her feel bad for her lack of compliance. He just urged her to make a few small changes. And he didn't expect her to be perfect. So she talked about how she made these small changes over time. But the thought of never having regular soda again was really hard. So she decided to try to do it once a year. That's what she does every year on her diaversary, she drinks a regular soda. I think it's just an amazing way of looking at things. So I'll link up her blog.

You know, when we think about all of the big stuff that we have to do to stay healthy, it can be overwhelming, I mean, whether without diabetes, but if you take it one little thing at a time and try to make that change, that's really the way to do it, and the only way to last, okay, so within the group, other people started chiming in with I want to try to do this or I think this is a great idea or here's my diaversary Beverly says she's going to do it with a root beer float once a year, and she is marking 55 years with diabetes. Tamara is talking about her three years with type two and she also had to give up diets. Soda her kidney specialist said No way. So they talked about that for a little while. Janice, who I've talked to many times before, has had type one for 65 years and Bonnie with 54 years. 37 years for Robert, I gotta tell you as a parent of a child who's lived with type one for now, 14 years, in just a couple of months, it is incredibly heartening to see all the amazing hard work perseverance and resilience, not perfection of the people who chime in when they talk about living a long life with diabetes. So thank you all so much for sharing that.

And I'll share a quick story about soda for me. I used to love Diet Coke, big time. I never kept it in the house. It was my going out. We're going out to dinner, going out to lunch at work, that kind of thing. I would drink Diet Coke. I never wanted my kids to drink soda so I'd never kept it in the house. A couple of years ago. Vinnie noticed this was probably four maybe five years ago. Gosh, it's been so long, and he noticed how much Diet Coke I was drinking and he knew that it wasn't good for me. And he challenged me to give it up for a month. Could I give up Diet Coke for a month? And I challenge I don't remember what I challenged him, but I gave him something back. And so we agreed we would do it. And I easily gave up Diet Coke for a month I switched to unsweet tea, which is what I still drink, which is hard. I mean, it’s the south everybody always drinks sweet tea and I’m like no unsweet unsweetened tea, please. I can't say I haven't had a diet coke since but it is rare. It is few and far between because you know why? I don't like the taste that much anymore. It's weird how things change, right? It was hard at first. And I really kind of felt that craving. But after a month, it was totally gone. And I know if you're a longtime listener, you know me and Benny, I wasn't gonna let him win that bet. No way. So I thank him for it now because I really don't remember the last time I've ordered one in a restaurant. And certainly the last time I had one, it's got to be months and months.

And just another real quick story. Don't get long here but about sweet tea. So my husband used to own a restaurant he owned and operated a restaurant for many years and He once told me if I ever saw how they make the sweet tea, I would not that I ever drank it, but I would never let anyone I knew drink it again. Because the amount of sugar that goes in there, it's not like oh, a little teaspoon of sugar per glass. I mean, it's bonkers how much sugar goes in sweet tea. I'll try to actually get a measurement of it and ask him about it. Maybe I can post that in the group too. I mean, I know that you're not drinking a lot of sweet tea. I mean, let's face it. This is diabetes podcast, but I don't know about you. I'm always fascinated by that stuff. Okay, back to the diversity. Sorry, I got off on a different tangent there. But if you've got a way that you mark a diaversary or a milestone or something like that, please let me know. You can always email me Stacey at Diabetes Connections.com or post in the group and tell me something good.

Okay before I let you go quick school check in for our family because oh my gosh this year, so so far Tulane is doing pretty well as I am taping this. It's been just a week for my daughter on campus classes did start they have switched to weekly testing. They as I had said in previous episodes, everybody had to be tested before they could step foot on campus. Then it was going to be random daily testing then mandatory monthly testing. They have switched that daily testing continues but mandatory weekly testing They haven't really put out too much about why they said it was in, you know, in consultation with health officials locally. My thinking is also that they saw all of the schools that have already sent kids home, so they decided to step it up. So I'm grateful for that. My daughter seems to be holding up just fine. Of course, everybody's nervous. But you know, fingers crossed. What a bananas year.

This is in terms of online school. Benny's ginormous school district with 150,000 kids is a virtual, and he is doing just fine. He just as I'm taping, he knocked on the door and said, I'm going to take a walk. He has a half hour lunch period. And he's decided to get out of the house for a little while and get off the screen. And I'm grateful for that. But he seems to be doing as well as can be expected. He's a sophomore in high school. He's got some really hard classes this year. He's got an AP class. I am optimistic, but he's a self starting kid. And I think that he'll do fine. But gosh, there's so many kids to worry about this year. And you know, my local district is doing a fundraiser for hotspots and computer access and it's really hard this year. So my heart does go out and We're to do what we can to help out has been a really hard time. But you know, I'm proud of him.

And diabetes wise, I think we're seeing the numbers go up a little bit. It's not for the reason you think he's not stressed out about school, but it is because he was sleeping through breakfast and often sleeping through lunch. And so we're in that nice steady range. You know, he'd wake up at 90, but he was 90 all night and until noon, because he wasn't eating anything. And now he's getting up in school starts at 755. So he's eating breakfast, and he's drinking coffee now and he's eating a little bit of lunch. So I'm just laughing all as well, and I'm really trying not to hover Haha, but I really am in control, like you helps an awful lot too. So I think he's going to do just fine. But it was really funny to see that. You know, if you sleep through your meals, and you don't have to vote this for him, there's a lot less room for error

And supposedly we will have a 504 meeting with the counselor at some point. That should be interesting. I will let you know what the heck that entails when we have virtual at home school, but I understand there's still needs to be accommodations. I'm not joking about that, but I am fascinated to see how it goes. Alright, thank you to my editor john Kenneth from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then be kind to yourself.

 

Benny  41:19

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

 

Transcribed by https://otter.ai

Aug 18, 2020

Have you heard of Bolus Maximus? Behind that great name are two men with type 1 looking to bring new resources to the community talk about the tough stuff.
This week, Stacey talks to Brandon Denson and Matt Tarro. They share their stories and what they hope to achieve with Bolus Maximus.

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

Previous episode with Brandon Denson (from 2016!) 

In Tell Me Something Good, we have a few artists in our audience and some good news for the podcast.

Join the Diabetes Connections Facebook Group!

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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Episode Transcription (Beta)

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.

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, the name caught my attention, but it's the people behind Bolus Maximus, who are looking to bring new resources and talk about the tough stuff.

 

Brandon Denson  0:37

Type 1 diabetes or the diabetes community in general, is a very, very tight knit community. But there's still a lot of work to be done. One of the main things that is going to separate us is that we're not focused on pulling you out from where you are. We're more focused on coming to get you from where you stand.

 

Stacey Simms  0:58

That's Brandon Denson. And he and Matthew Tarro, the creators of Bolus Maximus shared their stories and what they hope to achieve here

in Tell me something good. We have a few artists in our audience. And hey, a big honor for the podcast. 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 along. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I have to tell you I'm taping this episode a little bit more in advance than I usually do. Because as you're listening, it's last week, we took my daughter to college, as I'm taping it is this week, and the plan is to take more time than usual. I mean, nothing is usual this year. But as I shared in a previous episode, we're far from this college. This is an 11 hour road trip we normally would have flown but with things being how they We are driving, and we have to stay because every college is doing this a little bit differently.

Her college is testing the students upon arrival for sequestered in a hotel. And then when they get their negative COVID test back, they can move in and you have two hours. I think that's the window to move her into the dorm. So I'm kind of thankful she's a sophomore this year. I was so nervous last year when we moved her and not just about she was leaving, but are we gonna have time? Are we gonna do everything right? And what about making up her bed and she didn't need any of that. But you only recognize that in hindsight, so if you haven't moved your freshman college student in yet and you are doing that, as you're listening, some point in the future really will be okay. They really don't need you there. You really don't need to do a lot.

My husband did move some of their furniture around. I mean, it was very limited what they could do, he did help with that. So he is the one moving them in this year. I will not be going for that two hour window. But we're all going together. I will report back I'm sure if you follow me on social media. I'll be talking about it as well. I don't have any words of wisdom about schools this year, Benny, who's my son was type one, he is going to start the school year virtually because his whole district is going virtual. And you know, we'll see what happens. I am optimistic that next semester will be in person. But I don't know why I'm optimistic. There's no signs that point anything changing, demonstrably. But I'll keep my fingers crossed.

All right, a lot to talk about this week, I reached out to the guys behind Bolus Maximus, because how could you not with a name like that? I saw them on Instagram. I thought What are they doing? And I found out and I'm going to share that with you in just a couple of minutes. And this is an effort that is really much needed in our community and I think these are the guys to get it done.

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 glucose meter test strips lancets and your 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 lives with type one fake 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.

 

A couple of weeks ago I attended I guess attended in quotes the virtual friends for life conference. And one of the topics that came up just in the conversation we were having in the equivalent of the hallway, right? We're just talking to other parents and other people with type one diabetes was men with type one and dads have kids with type one. How come there aren't more forums and places for those people to talk amongst themselves. And you know we kind of batted that around for a little while you know guys don't want to talk and you know they keep it to themselves or they want action. They don't want to talk about feelings and we've had the the dads and diabetes podcasters on the show. I think they are a great resource. There's lots of episodes I've done with men, certainly who live with type one, but just a place to like knock issues around and forums to do that.

Well, that's what Bolus Maximus is all about. And yes, we will talk about that name and how it came to be. And if you haven't guessed you might be right there several reasons and things behind that name, which was fun to kind of tease out of them. So who's behind that? Well, Brandon Denson is one of the pair here. And Brandon has been on the show before he was diagnosed with type one as a high school senior, and he really wants to play college football. He joined the Michigan State football team. He earned a full scholarship there. He's a walk on and he earned that scholarship to play at Michigan State. He's played professionally and he has also been on American Ninja Warrior. Again, I'll link up our past episode with Brandon. The other half of this pair is Matt Tarro. He was diagnosed with type one in 2002. his sophomore year in high school and he will share that story in the interview. He works at tandem diabetes and one of the things that comes up when you Google Matt of like Google, everybody I talked to because I'm very nosy. One of the things that comes up is this column he wrote for beyond type one called the guy's guide to type 1 diabetes. And I will link that up as well, because as I said, There just isn't a lot of stuff. bullous Maximus has weekly discussions, they say talking about the tough stuff. And I should mention, it really isn't just for guys, I know that they're trying to walk this line here. I think they're doing a very good job of it, that these resources are mostly for men. But there are many chats where women are welcome because they really want to hear all perspectives. I will let them explain more. Here's Brandon and Matt and Bolus Maximus,

Brandon and Matt, thank you so much for joining me. Welcome to the show.

 

Unknown Speaker  6:41

Thank you. Thanks for having us. Yeah, appreciate it. Stacey. Thanks.

 

Stacey Simms  6:44

Alright, so I've talked to Brandon before, but I haven't met Matt. And before we jump in and talk about Bolus Maximus, which by the way is fantastic. Let me just ask you, Matt, What's your story?

 

Matt Tarro  6:57

Thanks this Yeah, I appreciate that. Thanks again, for for having us on today. So I was born in a small state of Rhode Island, East Coast. And I've migrated out to the west coast now after years of working in digital advertising. I started it, you know, Time Warner and ended at Snapchat. So wow spent, I spent a career in digital marketing and advertising. And now I work at Tandem in San Diego. So I've been out here for the last 10 months and for the release of control IQ. And so it's been awesome to be here and working in that space now, doing something that I truly enjoy. And we'd like to do. When were you diagnosed with type one I was diagnosed is a sophomore in high school. And 2002 and I was 16 years old, living in Rhode Island, going to high school, swimming, you know, doing the normal stuff that I was. I played a couple sports growing up but I really just focused on swimming. So while I was playing When I was diagnosed during that season,

 

Stacey Simms  8:02

we're able to turn around and get back into the season.

 

Matt Tarro  8:05

Yeah, yeah. And that was something that was Yeah, that was really cool. There's another guy who was diabetic on the team. So I felt kind of comfortable getting back in there. And 16

 

Stacey Simms  8:13

were you driving? Did you do remember wondering if that kind of stuff was going to continue for you? I mean, it sounds like you went right back to things pretty easily.

 

Matt Tarro  8:23

Yeah, I did. Mostly because I felt like there was a need to do it. I think the delivery when I was diagnosed from my parents and the educators was that this is your disease. You can choose to live with it or not. I did tune out I mean, I don't want to sound like oh, yeah, took care of that. It was really easy. But we never really easy it just really no, true. So I came from medical family and my background. I wasn't going to go to medical school. But my background, you know, in my family's background was was medicine. So For me, I heard that every day at the dinner table it was always around my house. And it wasn't specifically diabetes, but it made it easier to deal with such a difficult thing. And yeah, then I then I started getting used to it.

 

Stacey Simms  9:16

Yeah, and Brandon, we as I said, we talked we talked for an episode a while back and you were diagnosed as a high school senior. Gosh, and then you but you went on to play football in college and then professionally, how are you doing these days? How are you keeping busy during an active physically during a time when we're all supposed to pretty much be staying in and staying by yourself? Yeah, it's been

 

Brandon Denson  9:39

it's definitely been challenging. You know, it's been a while since the last time we talked a lot of things have changed. The good worse in for better, but, but I would say just with staying active and walking a lot in always on the blades. You know the blades is I find that you know my for cardio versus running or anything crazy like that. So that's kind of homestead stand fit trying to Anyway,

 

Stacey Simms  10:09

when did you start? I'm assuming this is rollerblades. Pardon me. I'm an old lady. When did you start with rollerblades?

 

Brandon Denson  10:15

Man I started rollerblading. I actually let it people don't know I actually used to play roller hockey going on my brother. But by far you know I'm from if somebody Michigan but Metro Detroit, Detroit is not that far from where I grew up at. And I was a huge Red Wings fan. So Steve Iser, me and Chris, I'll tell you, all of those guys, I grew up watching those guys. I never played ice hockey. But I have I definitely have a passion for hockey. And also definitely roller hockey for sure.

 

Unknown Speaker  10:50

Alright, so tell me what Bolus Maximus is all about. Let's start before we get to the great name. What's the need here? And Matt, let me ask you what what did you two ideas defi as the need that you could fill,

 

Matt Tarro  11:02

when Brandon and I started to connect, it was through Instagram. And we started to communicate because I was volunteering for a nonprofit. And I didn't see what I wanted. So I didn't see somebody that I thought I should be working with President. And so I felt like I had to go out and find that person. And that search led me to Brandon Denson, because he displayed himself in such a way that it was easy for me to go, yeah, him, him and I will get along, put me in a room with that guy. And because of our personality, we're extremely outgoing. We're very charismatic, personable, and just happy individuals. It doesn't mean we don't have bad days. We learned about those bad days from each other through the conversations we started to have. And so this whole relationship really grew. From 2018 the first time we met after, you know, just kind of here in there, the diabetes space to like how many people have you met in person randomly? You like, Oh, yeah, I remember you from so so I wasn't that involved. So I never really had a chance to meet Brandon. And then by the time I did get involved, he was like the person that had to meet. And I'm glad I did.

 

Unknown Speaker  12:23

Yeah. So then Brandon, let me ask you. So what is the need, then that you guys are getting together? You're helping each other you got good days together bad days together? What what needs are you looking to fill here?

 

Brandon Denson  12:36

So So I think it's something as simple as if we thought that we needed that. Why wouldn't other people need that as well? Why wouldn't they need somebody to talk to? Why would they need somebody to engage with why would they need somebody to help them do their highs and lows and lift them up? We all go through the same thing we live with live with diabetes is stressful. It's a 200 to 365 24 hour a day job seven days a week. And you know, it can be very, very tough. Like, I know your son has it and I'm sure you know, you're his rock, you know, at the end of the day when he needs you or you need him, but you know, to have a community we wanted to establish in the community that we're here for everyone living with with diabetes, obviously, yes, a focus, we'd like to focus or we begin to get our focus with males. But you know, as a male there not a lot of knows that come on in this space, and I'm just gonna be completely transparent about it. The women are winning. They're winning down, you know, because they're, they're not, they're not and I wouldn't even say from a male perspective, a shame to show it. I think that men sometimes they wear this badge of honor that they don't have, you know, they don't have to let this worn out. It's okay to let that worn out and talk about the ups and downs that you're having living with diabetes. It's nothing to be ashamed about. You know what I mean? Doesn't matter if you're black, if you're white. If you're old. If you're young, none of those things matter, we just want to give a safe space. So people feel comfortable. And that's what we're starting. But we'll be working on a lot more things than just kind of bridging that gap in the community to cover everyone.

 

Unknown Speaker  14:13

Tell me a little bit about what you're trying to do, because this is such a huge challenge. As we've said, Men don't really like to talk about stuff to begin with, which is why there aren't more resources like this, it seems What are you doing to kind of help them

 

Matt Tarro  14:30

showing up in their space and being loud about not being quiet? And I think it's important especially now with what's happening in the United States and around the world to use your voice where you see fit and this for Brandon and eyes, but after we first met, really Hey, man, we we just communicate better with each other than we have with other people. So I was driving around I had you taken some road trips around the western part of the United States, and I was on the road for like four or 567 hours at a time. And I would use chunks of those time to call Brandon. And then we would have conversations while he was on the East Coast after work, and I would talk his ear off while I was like, I need somebody to help me stay awake. But like, we got a lot of stuff out and talked about a lot of different things where we, we understood how similar the need was, regardless of where we came from, how we were raised, who our friends were, or what we were taught, the needs still remains its support, and you need someone to show up and tell you that they're there for you to to help you.

 

Stacey Simms  15:44

So what do you actually what are you doing with bullets? backspace. You mentioned some zoom calls. You mentioned some other ways you're trying to get guys to kind of reach out because right now nobody's doing anything in person, but you're able to communicate. Cool.

 

Matt Tarro  15:58

Yeah, yeah. I mean, I So we've started with zoom calls, because obviously that's, you know, everybody's family. And that's how everyone's communicating. And we saw it as the easiest way for all of us to get together. And then we've been using Instagram and Facebook as a platform to start to advertise. And we've really been feeling it out. But that we knew, like I said, what we were talking about as far as a knee A while ago, sorry, my dog is encroaching on my space.

 

Unknown Speaker  16:30

That's what zoom is all about. I wish we could show that on the podcast.

 

Matt Tarro  16:36

He He's Yeah, he's usually with me. But so. So the, the idea was, you know, let's, let's start with zoom calls and put people in a position just to open up and see how that goes. And to say it's been rewarding as someone who knew that that was a need. And they're like, hey, let's try this. It's been great to see the reception. So we're going to start There, but our idea is to is to go and travel and find people in places that maybe they thought they, they had nobody coming to see them. So small communities, and then underserved communities, most importantly, the places that other people haven't been. And for whatever reason, won't go. So we feel like that need is a lot larger than just the male communities need to be addressed. So if we start with men, and we can address them, then I think we'll be able to, to start to maneuver our way around it to some different communities and make an impact

 

Stacey Simms  17:40

and branch it you've already had some experience with this, I would assume just because when you've been at conferences in the past, you know, people want to talk to you about playing football. And I'm sure you've been looked at as a role model. What are a lot of the things that that guys whether they're teenagers or adults with type one, I'm curious, like, what do they ask you about, you know, what are they curious about?

 

Brandon Denson  18:00

Um, to be honest, I like to, uh, after I speak or anything like that, or engage with anybody, anybody or share my story, I just say, you know, all bets are on, you can ask me about school, you can ask me about football, you didn't ask me about culturally how I came up with diabetes, you know, I don't really hold back from anything. And you know, I think when you when you kind of say like nothing is off limits, and that's kind of when the teenagers get DAX, and questions. Some of them raised some questions about girls or what should I do? When I play sports? What should I do on my pump? Do you wear your palm? You know, what teams have you played for? Things like that, but you know, I use my you know, I just try to use everything that I've been through, you know, as something to share, like, what would I be if I wasn't able to share that story? Yeah, maybe my story isn't this glamorous story like I you know, I had to walk on at Michigan State. I didn't What I was going to do when I when I was first diagnosed, but I knew deep down in my mind that I could still do everything that I set out to do. And you know, I wasn't going to let anybody in, especially diabetes get in the way of that. So I think when you're talking to individuals, whether they're 40 years old and just got diagnosed, or they're 12 years old, when you can share that story of everything that they that they're going through, or going to go through or have already been through that connection is, is unexplainable, you know, is is something that's very, very remarkable.

 

Matt Tarro  19:30

And I think just just to add to that, our ability to cater to different age groups, you know, just through conversations is something that Brandon and I discovered about each other, he, him and I both have shared a lot of experience working at camps. And then we've got backgrounds working with kids in general, right through camps in school programs. Riding on insulin now. We've both been coaches for writing on insulin camps, you know, at the same time on different parts of the country and that that's a really cool part to know that there's somebody else. At any given time, who you feel like you're connected with, we want to give more individuals that opportunity to feel like that.

 

Stacey Simms  20:13

talks to me about the name, I think people people think of the movie Gladiator, right? They think of Maximus or you know the name of the general or maybe it's maybe it's just large I don't really know. So we're just polis Maximus come from

 

Brandon Denson  20:29

you, you must be in like both of our heads.

 

Unknown Speaker  20:34

Like that. I like the way you broke that. Yeah.

 

Matt Tarro  20:39

And I appreciate you presenting it like that without us ever talking or like mentioning it to you. So to reference that movie, that is a perfect example. That was personally a favorite movie of my father's love growing up. So when when I would understand what people talked about as being like a man for some reason, like all these Other images kind of fade out and then this is like Gladiator looking dude standing there with the with the wind with a sword. He's like, Who's asked, we go on a kick. And so that mentality is, you know, as a diabetic, something that you would want to carry around. It's it's almost impossible though, to always be that person in this day and age. You can't be the big bad wolf all the time, yet you have feelings, especially as a man. And so there's a play on that to be certain. The easiest way to explain it is Brandon and Matt is Bolus Maximus bnm. And there's a max bolus setting on a pump, which is a real thing. 25 units, it's the most amount of insulin you could take at any one given time. And so you should put the maximum amount of effort into your diabetes at all times. I knew my high school Latin would pay off.

 

Stacey Simms  21:51

That's really funny. I mean, that's a wonderful explanation. I love it. In that movie, I can see that I can definitely see you as a kid, which kills me because I was a grown adult when you're away from having my first child when that movie came out in 2000. I just looked it up while you were talking. That's what happens. We're all the same age on a podcast. Yeah. But I love that because it's really, it really gets a lot of different points across. So what's your dream with this? And I know you're working together. But I'd like to hear from each of you, you know, you said when we can, again, traveling, getting in front of lots of different people who are totally underserved right now. And I think that's so needed. But it just sounds like this is a big project that you hope will will continue. So Brandon, let me let me start with you. You know, what do you really hope happens here? What's your big goal?

 

Brandon Denson  22:48

Like you said, it sounds like a big project. But at the end of the day, you know, Rome wasn't built overnight and there's a lot of holes and gaps in you know, in the diabetes community. And when we say community we mean community as an everybody as a whole. No matter where you're from, no matter what you look like, no matter your culture, none of those demographic, none of those things matter to you. The only thing that matters is that we bleed the same color. And we go through the same ups and downs. When we speak of the community, though, I think the main goal is to bring the community even tighter. I believe that the type 1 diabetes or the diabetes community in general, is a very, very tight knit community. But there's still a lot of work to be done. One of the main things that is going to separate us is that we're not focused on pulling you out from where you are. We're more focused on coming to get you from where you stand. And that's something a lot of organizations don't do. They expect everybody to come to them. And you know, like I said, it's a lot. It's a lot of work. It's even a lot of work up to this point. We've This will be our 10th week, hosting costs. But we understand what people get from those calls, you know, and it's, it's one of those things, we've gained that momentum, and we're going to continue to gain momentum. But there's going to be a lot, a lot more legwork that has to be done. But we're willing to do the end goal is to make sure everybody in the community has a safe place, not only just to be inspired, motivated and educated around diabetes, but they feel that they're a part of this.

 

Matt Tarro  24:35

In reality, when I look back between 2017, late 2017, around 2018, when Brandon and I started talking and the end of 2019, so almost like a two year time, end of 2017 to end of 2019. I traveled a lot around the western part of the United States. I would leave Los Angeles on two to three weeks with my dog and we would go out camp Every night and go to places we had never been to just learn about how to interact with people that you've never met before. And that how can you appreciate what they do different from where you grew up, and how you've lived. So after the years I spent on East Coast, New York City, Boston, I was there was an easy escape to get out to Montana in Nevada or Washington, Idaho. Some of my my favorite places are all in the states I've only been to in the last few years. So we're intending to go back not only to those places, but everything east of it, and start working our way into the communities to help bring people to places they've never been. And then to bring things to people that they've never seen.

 

Stacey Simms  25:45

Brandon mentioned, and you both mentioned the zoom calls that you've done, which I know isn't exactly the way you thought to kick this off, but we've all kind of had to adjust over the last couple of months. Do you mind me asking what you talk about? Are there particular topics that have come up

 

Matt Tarro  26:00

Our Our idea was that hosting calls was creating the safe space that Brendan mentioned before. So for us having topics that require the safe space, were obvious.

 

Stacey Simms  26:15

That's great.

 

Matt Tarro  26:16

Some of the things that we talked about during May was we had an opportunity to bring Mark Ayman and who, you know, is working as far as mental health is concerned during Mental Health Awareness Month, in a space that we asked him to come partake in a meeting, and he said, Yes. And that was awesome.

 

Brandon Denson  26:38

Because we got to grow to two females that were able to join. They reached out to us to make sure it was okay. Of course it's absolutely okay. If one of them was actually from South Africa, yeah. So,

 

Matt Tarro  26:52

so we we, you know, we probably could have made this clear in the beginning. While we do host calls for men, they are open to everybody. We spoke the

 

Brandon Denson  27:01

last two weeks. In regards to caregivers. That was a really huge topic that we saw. And we got a lot of feedback from in regards to caregivers joining and then also people sharing their stories about about their caregivers. We had a guy put his name out there, it's I don't know if he wants me to reference him, but he has a six year old son. And it was awesome to hear from him, you know, the things that he goes through, but he also invited one of his partners, a buddy of his and in the duel between that Father Son is unique because they both have type one diabetes, which I thought was amazing, but for him to come in, to get, you know, to listen to other people in the caregiving realm and you know, also be able to also be a caregiver for himself, but then also his son. You know, I think there's a lot of weight on that. So with that,

 

Matt Tarro  27:59

yeah, there's So caregivers, we've also talked, we did a couple of things in the beginning when we first started to host the calls that were more of skill shares. So hey, let's have the room, there's a soapbox in the middle of it, you want to stand on that you tell me you can. And it's not us making judgment or anything, whatever you want to bring to the group. So we had guys talk about graphic design, we have individual works with writing on insulin, who had a lengthy journalistic successful journalism career. And so that type of stuff really brought a different element. We talked about art, talked about different styles of art. We talked about movies, we did movies and music one week, you know, guy stuff, but in reality, that is also a way for us to bridge the gap between a difficult conversation, which we spent two weeks having, how to approach difficult conversations. laughter. You know, things really took a turn for the world. In the United States, after the death of George Floyd, and it's not something that we wanted to just bring people into a room and go, alright, let's talk about it. But that's actually what we did. And it was two of the best conversations to date. Yeah,

 

Brandon Denson  29:15

I'll say, I'll say hands down. You know, I think you never want to jump in, like, you know, and kind of discuss the things that are going on around the world. But the things that are going on around the world and in the United States affect us directly. Was it the easiest conversation probably to open up? and not so much was everybody willing to share they did, you know, and that was very, very important because, you know, you have different cultures, different races, not looking at it from a different perspective and only seeing it and then you have people saying that they're going to work to do better. And that's all we ask. We just want better, you know, better, better, better in sports, better in school better in the community and ultimately better with diabetes better But,

 

Unknown Speaker  30:00

you know, and

 

Brandon Denson  30:02

I do think it's it's so important because we, so many of us are worried and nervous to talk about race. I mean, let's just put it on the table. I've had these conversations before. There's such a lack of diversity at diabetes events and on panels. And, you know, I'm always so grateful that when my son was diagnosed, I could go to a conference and see people who looked like him. And no, people had the same traditions were Jewish. I met people right away that had the same traditions and background as us. And so I know it's so important when people, people who are black people of color to see people who look like them. It's as simple as that. But it's so hard to talk about, right? We don't want to say something stupid. We don't want to say the wrong thing. Yeah, and I think that's, you know, you hit it right on the head, you know, that's, that's a big, a big hole in itself. You know, I was a volunteer for jdrf for 12 years. And then I also was a worker for close to two years. And you know, you see this this big, get caught within the workplace outside of the workplace, and you see that nothing has changed, you know, nothing has changed. Like nothing me, I'm comfortable talking to anybody. But I can't say that if I took one of the kids that I knew from the school in Detroit that had diabetes, and I took them to jdrf event that they will feel comfortable there, because they wouldn't, you know, I'll be lying if I said that, that they would, or I took them to another community event and to say that they will feel comfortable, they will feel left out because nobody is interacting with them. Like they need to be interacted with, you know, and that goes a long way. You know, I didn't have somebody when I was growing up to talk to about my diabetes, cannot sit here and say that I may be needed someone. Yeah, I could probably say that. But at the end of the day, I knew it was my disease. I knew what I had to do. Everybody doesn't have that mindset. So you know, we want to make sure we create that space. No matter how old you are, what you look like, where you're from your culture. None of those things matter. Because we just want to help you do better in whatever it is that you want to do better.

 

Stacey Simms  32:04

Well, I appreciate you addressing it. I want to have a difficult question for the two of you, you have big goals. It sounds like when we can move around the country again, you want to get right out there. How are you paying for all this? What do you need?

 

Brandon Denson  32:19

actually gonna see if you will sponsor

 

you know, in a band, we'll put the logo on the side and we you know, a we will put the animated character on there. We were completely fine with that, you know, so, you know, we have a lot of work to be done as far as forming our our nonprofit and things, things of that nature. Obviously. Any nonprofit getting started from ground zero, takes a lot of work. This is grassroots, you know, but understanding the process of everything and what the process is going to be. As we look as we try to complete things they'll never be complete. It's never complete over the never be complete. And we understand that but we know that the steps to make it great are really rely on us and our board members and and, and everybody in the community.

 

Matt Tarro  33:14

Also we are offering videographer and photography services at a super good price in San Diego, Los Angeles. That's real because that's what Brandon and I do. And that is the type of thing that we would use to help fund this project. The easiest way for us to get information back and experiences and share experiences is to tell story and stories, many of them as many as we can. And the idea would be to do that through video and photo and to go and do that. Now. I've been doing freelance work for a couple years now. It is super inconsistent. If you get a couple of good gigs and you can, you know, put your best foot foot forward and get some more work based on it. That's what we're looking to do is is to have people see what we're already doing. We're making a lot of strides in the right direction. And I think, if anything, you know, we're going to work on our nonprofit, you know, getting everything set up, but at the very least, if we want to plug anything, it's the fact that Brandon Knight take really good photos and video, and we'd be happy to do it for anybody.

 

Stacey Simms  34:26

Everybody, okay.

 

Matt Tarro  34:27

Yeah. Oh, no, that was just my phone. Beeping.

 

Stacey Simms  34:30

Alright, just sounds like a Dexcom alert.

 

Unknown Speaker  34:34

All right, just checking the mom instincts kick right in. Okay, but so it sounds like you're gonna set up a nonprofit. You're but you end and Matt you already work at Tandem?

 

Unknown Speaker  34:45

I do. Yeah. So that and so.

 

Unknown Speaker  34:47

Okay, but I guess my question is, so tell me more about the photo and video. Is this a business you guys have as you said freelance kind of on the side?

 

Matt Tarro  34:55

Yeah. I never planned on even saying that on this call. We just We know that that's something that the both of us do in our own worlds that Brandon and I have operated in, you know, independently for the last 30 something years, we've put ourselves in a position now, to be in the same room with a bunch of cameras, drone tablets, I'm hosting some gallery space downtown San Diego. That's, that's what I was doing. And that's where a lot of my focus event. So for me, it's been everything, like just find what it is that you can do really well and that other people might like you to do for them. And that's been photography for me for a while. And so I've got photos and art up in there, we've created some art, we've got some t shirt designs. So the ideas have just been flowing every time we talked, like cool is another page in my notebook full. Well, I really, I've got you know, I've got a pretty good sized chunk of pages already full in that notebook of ideas, the direction we'd like to go and then reminders to ourselves about why we're doing that. Miss.

 

Unknown Speaker  36:01

I'm so glad to learn more about this. I'm looking forward to see what you guys accomplish. You know when, like I said, when you can get out and about but even before that, it sounds like you're already feeling a great need. I really appreciate you coming on and sharing it. I hope you keep us posted. We come back on and talk about it.

 

Matt Tarro  36:16

Most definitely, we definitely we're honored to do so.

 

Stacey Simms  36:19

Thank you. Very cool. Thanks again.

 

Unknown Speaker  36:27

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  36:33

Lots more information at the episode homepage go to Diabetes connections.com. The episode should pop right up it's on the main page. Otherwise you can use the search box as well. We have a very robust search. I like to mention that all the time because there's a lot to go through especially if you are new. Tell me something good coming up in just a moment. But first diabetes Connections is brought to you by g bulk hypo pen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary and that's rich evoke hypo pen comes in Jeeva is the first auto injector to treat very low blood sugar. GMO cocoa pen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it, you pull off the red cap, push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the G folk logo. g folks shouldn't be used in patients with pheochromocytoma or insulinoma visit g fo glucagon comm slash risk.

 

Tell me something good. I was really pleased and kind of surprised to find out that we have several talented artists in our Facebook group. Suzanne shared that she finally made time to work on my art. I've missed my pencils she wrote so I asked her a little bit more about it and she shared a picture. She's a portrait artist cartoon and realistic and a graphic designer. She's been type one since 2004 but she had gestational diabetes two times prior to that. She says she's been on the pump since 2006. Her dad lives with type two. And her grandfather and his cousin lives with type one and you can see an example of Suzanne's artwork at Diabetes Connections. The group on Facebook thank you so much for sharing that. It's just beautiful. And Callie nordgren who I've known for a long time just online you know, it's part of the we are not waiting community. She said I sold a painting and that's the calling posted when I asked her tell me something good stories like you know, oh, we'll do that sold the painting. So of course I had to ask her to share more. And she does watercolor paintings. She said sometimes people ask for specific painting. Sometimes they purchase one that she's already done and she posted one which is just beautiful and she has a Facebook page as well. And I will link that up. Calling son was diagnosed with type one at one year old, very tiny, maybe 1112 months old, and he is now a happy healthy tween and Colleen and Wes are a huge part of the we're not waiting community but I didn't know calling painted until now. So thank you for sharing that. And I have a Tell me something good. And that is that the podcast Diabetes Connections has made the top 10 for health for the fifth year in a row for the podcast awards of the People's Choice. This is a podcast award for independent podcasters. Right. No NPR, not the big Corp casters, not the ones that have 25 people working on a show. This is for the independent podcaster like myself, and I am so excited to make this list. Again. It's just a thrill. They will vote on the final winner each category. I believe that comes out in September. I never expect to win that. I mean, we are a tiny little operation here, but it's such a vindication. I don't know if that's even the right word. But you know, we work really hard on this show and it is a labor of love. It's also a commercial enterprise. You hear the commercials during this show. Man I work really hard on it and to be recognized by my peers like this by my listeners who nominate Thank you all so much for doing that. It really, really helps. It's really important to me and I'm really excited to have made this list again, when we when I don't know maybe we've lost some really interesting podcasts before my favorite was the guy who puts you to sleep. He has a podcast where he literally is boring and drones on and whispers and you go to sleep to that. And you know if we can lose to that, hey, what am I going to do? I can't compete with that. If you haven't told me something good story posted in the Facebook group, send it to me, you can always reach out Stacy at Diabetes connections.com and tell me something good. Diabetes Connections is brought to you by Dexcom. When you have a toddler diagnosed with type one, you hear rumblings for a long time about the teen years. But when it hit us at full force a little early. I was so glad we had Dexcom Benny's insulin needs started going way up around the age of 11. He's grown I don't know how many inches since he was 11 years old at this point, probably eight in the last couple of years. Along with the hormone swings. I cannot imagine managing diabetes during this crazy time. Without the Dexcom continuous glucose monitoring system. We can react more quickly to highs loz see trends and adjust insulin doses with advice from our endocrinologist I know using the Dexcom g six has helped improve Benny's agency and overall health. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes, Connections comm and click on the Dexcom logo. As you listen to this episode my kids are back in school if all has gone well we have dropped me off at college Benny has started school as you're listening this is scheduled to air the day after he starts school are virtually at home. I offered to make him like a homeschool virtual school nook in my house right I see all these beautiful pictures that people put on Pinterest and Instagram and their their kids desk is nice and it's like twinkly lights and a pillow or a little thing that says you know learning is great or whatever. And of course I wasn't serious because we don't do any of that were terrible parents and Benny laughed at me and said Please leave me alone.

 

Unknown Speaker  41:57

So if you've got

 

Stacey Simms  41:58

some interesting stories About your child is going back to school. And I think we all do. I'm not trying to make light Look, I know it's a serious situation. But I have only control over a few things. And that's what I'm going to concentrate on, on what I can control in my house with my kids in my community. And beyond that all we could do is vote diabetes wise, we're kind of in a groove. And with the weirdness of school this year, I don't see that changing too much. Of course, he's gonna be getting up earlier than he has since March. But other than that, I mean, we went on control IQ in January, he went off the receba and you can listen back if you're not familiar with our whole story on that he went off the trustee but in May and his blood sugar's just are great right now. Time and range is up, agency is down, predicted agency is down. I'm really really happy his independence is still really up. He's still a doofus and makes mistakes because he's a human being. And we're still compiling more world's worst diabetes monster. every couple of weeks we have a new one. That will never changed. Thank you to my editor john Kenneth 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.

 

Benny  43:10

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

 

Transcribed by https://otter.ai

Aug 11, 2020

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

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

Join the Diabetes Connections Facebook Group!

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

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

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

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Episode transcription:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stacey Simms 28:11
Sorry. Spoiler

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

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

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

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

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

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

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

Stacey Simms 30:17
You got it Robin.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mike Suarez 45:47
Right. So yeah,

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

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

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

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

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

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

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

Transcribed by https://otter.ai

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Aug 4, 2020

Back to school is stressful for families touched by diabetes, even without this year's incredible and unique challenges. There’s a new service in development to help make it just a little easier to let someone else take care of your child. Bob Weishar is the founder of a new company called Invincible. We’ll find out more about what he hopes to do and how this teaching and communication tool might help.

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

In Tell Me Something Good.. graduations.. zip lining and sky diving!

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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Episode Transcription:

Stacey Simms :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.

 

Stacey Simms  0:23

This week, even in normal times back to school is stressful for families touched by diabetes. But there's something new in development to help make it just a little bit easier to let somebody else take care of your child.

 

Bob Weishar0:34

And when you're trusting other people to do that, there's bumps along the way. And I think that's one of our goals is really to develop that trust with school with grandparents with other places that kids go so that families don't need to worry so much and then kids can just go about their lives and have fun wherever they are.

 

Stacey Simms  0:52

That's Bob Weishar, the founder of a new service called invincible. We'll find out more about what he hopes to do and how this teaching and communication tool might help in Tell me something good graduations, zip lining and skydiving. 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. If you are new, we aim to educate and inspire by sharing stories of connection. My son was diagnosed with type one right before he turned two. He is now 15. And like many of you, I have been back and forth and back and forth and up and down about school. I have a high school sophomore. That's Benny and I have a college sophomore and I'll talk about my daughter in just a moment and her plans. But boy school this year will look like nothing any of us have experienced before.

our school system as I am taping just changed the plans and I'm sure they will change again. But here's what happened. We live in the Charlotte Mecklenburg school system Mecklenburg is our town County. This is an enormous school system with 150,000 kids. It's geographically large. It's a metropolitan city Charlotte with lots and lots of suburbs. I grew up just outside of New York City. And if you are from the northeast or probably other parts of the country, but definitely the Northeast, the school districts are tiny, right? They have a couple of thousand kids, maybe 10 15,000 kids, and then each town has their own system. We had the Yorktown school system where I grew up a couple of elementary schools, one or two middle schools and one high school. So you know, making decisions for a much smaller district, very different than making decisions for this gigantic one.

I was prepared to have a lot of patience to go along with the decisions made as long as I felt they were safe. And I knew they were gonna have lots and lots of options they had already been talking about this all summer about maybe hybrid maybe in person may be remote with the opportunity to opt out at any time. About a month ago, our school board announced the choices that they would be making. They had three plans a UBC a would be fully in person B would be hybrid c would be fully remote. And you also had a different option where you could opt into a Virtual Academy. And once you did that your child was online for the semester, no matter what the school decided to do, if they came back, if they went, it didn't matter, you're you were on line for the whole shebang. So we had to wait for the governor to decide what to do here in North Carolina. And once that option was made, our school district pulled the trigger on Plan B, but they called it B plus. And it was an option that hadn't been on the table until that night. Basically, it was in person for two weeks, and then virtual for further notice. And what they wanted to do is see the kids they wanted you'd only go in for two days. During those two weeks that they wanted to see the kids they felt like they had lost track of some kids again, it's a very large school district. They wanted to give the kids technology and just wanted to make sure that I guess kids weren't being lost in the shuffle was what they said.

But just today, new ruling came no two weeks in school. That was the Not safe. We're all virtual. So virtual until further notice in Charlotte Mecklenburg. And I'm telling you this long story to illustrate what you're probably going through as well, so many different decisions, so many choices to be made. If your child is in a public school, or a charter school or private school, or you homeschool already, there's nothing easy about this. I'm going to come back after the interview, and talk a little bit more about my daughter's college plan, which I think is pretty amazing. And it's I wish our municipality had this, I feel like she's going to be safer there than even in our county. So I'll talk about that towards the end of the show.

I feel like it's such a difficult time right now. And we're putting so much pressure on ourselves as parents. So before we jump into the interview, I just want to say two more things. One, if your child has a 504 or IEP, just remember, it's still valid even if you're in a virtual situation. I don't know exactly what that looks like. It's different kid to kids, certainly. But it is valid and I know that in our school district where they the plans are good for two years unless you want to make modifications. They will contact As the semester begins, so I know we'll be having a conversation a couple of weeks into August or September school here starts in the middle of August, which is, again, very different from how I grew up or school starts after Labor Day, but your 504 or your IEP, they are good, regardless of how school is happening.

And the second part is deep breath. I was on a call recently with a teacher who lives with type one. So shout out to Rachel, and she told us and I want to pass this along to you, your child can always catch up on learning, but your child needs now is love, support, your confidence, your calmness, as calm as you can be, your child needs you to just be there to be supportive, to be helpful. And to help them get through a situation and you can be honest about it that nobody has faced, the grades will come back, the learning will come back. But if we could take a collective breath as a community and help our kids who already have so much on them, and we have so much on us with diabetes, I think really it'll be so much easier to get through and when we're finally through this month. We can see, okay, you need to learn this, you need to catch up on that. But we will not have sacrificed that love and that support. And if you are a teacher or school staff who decided to listen to this episode to see if you could learn something from it. I do the same thing to you. I say at the end of every episode, be kind to yourself, man. Oh, man, you gotta be under so much pressure right now. Be kind to yourself and let's just get through this as best we can together.

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

 

How is the communication around your child's school experience you text or email or get a printout? Maybe you already use a diabetes app to keep track of food and dosing and care and other issues. Well, my guest this week wants to help standardize that make it a lot easier. Bob Weishar was diagnosed with type one in college. He shares that story and a lot more and joined me to talk about invincible Bob. Thanks for coming on. I'm really interested to learn more but but what a time to be talking about schools. Thanks for spending some time with us.

 

Bob Weishar7:43

Yeah, really happy to be here. All right,

 

Bob Weishar7:44

before we get into any questions about this school year, and how different it is going to be because I think most parents already feel that way. And let's just start what is invincible. Describe what this is all about.

 

Bob Weishar7:55

Yeah, of course. So we started invincible really is our mission is to inspire kids with health issues. And we purposely picked a name that doesn't have health in the title. Because really, we think that there's a lot of opportunities that kids have with health issues to just live a normal life. But even more do do amazing things. And so, broadly speaking, that's our mission, obviously, there's a long way to go to reach that. And where we've actually started is, throughout the journeys that kids have is helping them in every stage. And so as kids grow up, we want to be able to help parents and their kids really grow. So we've actually started with schools and families as a place where kids spend most of their time when they're not at home. And we've been working for the past 12 months or so to really work with schools work with families to develop a product that connects them throughout the day and ultimately gets better care for kids and the support that they need, especially for elementary aged kids

 

Stacey Simms  8:50

You were diagnosed as a college student though, and you don't have children with type one. How did you come up with the idea to do something like this?

 

Bob Weishar 8:57

Yeah, it's well, a long time in the making. I think I was So I was diagnosed as a freshman in college in, I mean, I got to see firsthand what it was like to be kind of away from home on my own trying to figure this out. Luckily, I didn't go to the emergency room, I had kind of the symptoms I'm sure a lot of people have around just being alive and drink a lot of water, losing weight for college freshman was a weird thing. So that kind of took me off. But really, once I was diagnosed, went through all the struggles that I think families and lots of people go through when they're first diagnosed around just learning the disease and learning what to do. And I mean, I was just thinking about this the other day around, trying to go to a support group even and just seeing people that no one looked like me right and, and that really was kind of the place that I was meant to go learn and figure this out. And so that kind of stuck with me and that that planted the seed and it sounds weird now, but I always wanted to do something more with it than just manage my own condition and really after college got the opportunity to work on a couple different projects with some insulin manufacturers and develop some innovative programs around kind of chronic care. Management. So through there got the first itch to really apply my personal experience, but then also match it with professional. And then from there went to BigFoot biomedical. And so really, that's where between those couple of experiences got a lot of first hand experience around what to do what people need. But I always wanted to do something more, so Invincibles a long time in the making, and I give that backstory because it's there wasn't any one aha moment by any means. It's kind of 15 years in the making. I think I have lots of school presentations and things that the ideas kind of came as we went and really started it just as a way to figure out a way that we think that families and kids especially the support that they need, and go from there.

 

Stacey Simms  10:41

What did you do at BigFoot, if I may ask?

 

Bob Weishar10:42

Sure. Yeah, so I was a product manager and I was focused on the closed loop system. So started pretty early, early on there with the engineering team and built the product that went into

 

Bob Weishar10:52

the clinical trial there. Again, as you said, there was no aha moment. But I know a lot of people who have worked or were working at the time of Bigfoot, and there are there are families They are right. There are adults with type one with children, but they were adults who have children with type 100%. No.

 

Bob Weishar11:07

And Bigfoot was such a great place to really just be immersed in that in that world. And that was really the first time that I had been around more than one or two people at a time that that had been so directly affected by diabetes. And so being able to go to work every day with people that knew what they were doing. And I mean, my first week up big fight, I was actually trying the Dexcom for the first time, and I figured I might as well use technology, there's going to be a diabetes tech company, and just having all the tips and tricks and the people that knew what they're doing, but really just had being surrounded by people that were just so passionate for it was just such a great environment and such a great place to be. And so yeah, I think that that gave me such a great foundation to build from and grow with people in this community.

 

Stacey Simms  11:48

So let's talk about invincible and what the vision is here. I have a child who's in high school who frankly, is at the stage where it's much more hands off, you know, but we went he was diagnosed at two we went into kindex gotten where you went to take care of preschool and then kindergarten. And as you know, and as most people listening know, there is so much that has to go on when you're trying to teach a school or maybe deal with a school that has no nurse or a part time nurse or a nurse who doesn't really know what it's like about type one, or who's overwhelmed by having 10 kids with type one, along with all the other kids that she has to take care of her he has to take care of. So I guess the first question I would ask you is, what are the problems with the difficulties that you're trying to help with? Because I know a bunch of them?

 

Bob Weishar12:30

Yes, absolutely. So that was actually about the first six months of starting the company and figuring exactly that out. So as you know, a lot of parents have the horror stories, right of what happened at school and could be all age ranges, right. And lots of things happen. And diabetes is you know, it's just really tricky. So we started with schools. It's really just kind of a research project to figure out where can we help because we heard from a lot of families that school in particular, created a lot of frustration and I mean mix it in with kids are getting older and figuring out their own lives. We've actually spent the first six months really just going into schools and interviewing school nurses to find really their side of the story, because one of the key kind of hypotheses with it was that there aren't really bad nurses. There's just a lot of overworked nurses that are probably under resourced. So that's kind of what we went in with. And we didn't go in with too many assumptions, because we just wanted to learn and we kind of had the family side of the story from lots of interviews, and really just wanted to see what what is the school nurse side look like? And what does that look like, at the school setting? And so from a solution standpoint, as we start to think about this, it's really, when kids go to school, there's, there's so much going on, right? And schools are built to teach kids at the end of the day. And so what's ended up happening and what we saw in most schools is really, there's just very, very few health resources to deal with any sort of chronic health issue, especially type one diabetes. What we found is in the schools where where it works, usually it's a really just dedicated nurse who goes above and beyond. It's a family who's just leaning in and doing everything. They can A kid with just a great head on their shoulders. And I'll be honest, we saw that more often than not, we didn't see a lot of horror stories, but there's just it creates a lot of frustration for families, of course, that what they do at home can't be the same as what they do at school and, and that's what we're really trying to help is just bridge that gap between when kids are at home and families develop their routines to when they go to school. And one of the things we saw really early on was just all the paper notes and kind of process that that gets handled at school, that could just be so much easier. What we came up with is really starting to develop a way where families can start to get some of the information that's happening at school. So when kids are in the nurses office, and the nurses already giving them insulin and writing all this stuff down. We actually saw a lot of families exchanging like paper notebooks to have their kids carry around that just inherently bugged me. The last thing we want is his kids to be carrying a notebook around and feeling any more different than they might feel already. And so that was kind of the first place where we just said okay, this this is a very solvable piece of this And so that's where we've been working since is really starting to develop just those relationships with schools and families, and then a product that helps bridge that gap.

 

Stacey Simms  15:06

So this is more than an app that takes place of my paper notebook, which by the way, I'm laughing as you said that because my son went back to daycare is a terrible parent. I am, he was not yet to. And he went back to daycare a week after we got home from the hospital, because my assumption was, they taught me the dummy who knew nothing about diabetes, I can teach these wonderful educators and caregivers who probably know a lot more than I do about children anyway. And they did and they were wonderful. And boy, we'll be lucky. But we had paper going back and forth. Of course, this was 2006 2007. But we had that piece of paper that the daycare center does, you know, oh, your child was nice. Today, your child went to the potty at this time. And your child's blood sugar was also this, like we just wrote it on the same piece of paper. Yep. Yeah. But I assume it's more than an app because there's lots and lots of blood sugar logging apps that tell me about the education component that you've mentioned a couple times.

 

Bob Weishar15:57

So really, I mean, I think this probably goes back to that first experience that I had to go into a support group and what it takes. So we've developed first is really just the basics content. Our target audience for that is anyone who might be supporting a kid with type one. So think teachers think school staff, think grandparents or friends and family that need to know at least the basic information to keep kids safe. Our spin on it isn't typical diabetes, you might see we want to make it fun and really friendly so that maybe a kid could use it but especially a grandparent doesn't have to be terrified of it and a teacher can do it on our break so that she has the information that she needs and isn't scared. That's what it's about for and really what we've developed as a foundation to develop a lot of different content beyond that, we're really starting with the basics so that kids have just the basic level of support that they need at that school but then also what those other places

 

Stacey Simms 16:50

Can you share a little bit about what it looks like right as a school pay for it. Does the school have to meet with you what why don't you know what what is really I know a lot of this might be proprietary but No, no,

 

Bob Weishar17:00

it's all good. Well, we're a startup. So we're very much figuring this out as we go. So I'll confess that but but but the education standpoint, we want it to be free. And we think that's the bare minimum thing that we can offer that just makes learning accessible to anyone in the world. And one of the really interesting aspects of this is that once we've developed kind of the framework to do these things, is that it's very easily you might imagine scalable to other languages even. And so Spanish is a great example that's pretty underserved, especially from a diabetes standpoint, where we can start to develop these fun training modules. And if you know Duolingo, that's kind of our our guiding design principle of just making it fun and friendly and kind of simple quizzes and games that anyone could do. So from a business model standpoint, the learning pieces is what we see is free and we want anyone to do that because at the end of the day, we want kids to have support wherever they go. And it's not just the kind of the technical skills of how do you deliver insulin? How do you check blood sugar, but I mean, a personal bias for me is how do you support kids emotionally too? And, and how do you talk about it? And how do you say the right things? And especially in a classroom setting? How do you get them to just feel normal and just a normal kid in class and, and have a teacher talk about that stuff?

 

Stacey Simms  18:14

I'm curious to how you're developing the education component, because there are so many differences among diabetes families, we had four kids in our elementary school and my style of parenting was very, very different from other there, you know, there's no right or wrong, it would never works for that family. But I would educate a nurse and educated educator, sounds funny, I would educate a nurse and educate school staff in a different way about type 1 diabetes. And to be clear, you know, it's not that I mean, there are some things that you have to do that are just type 1 diabetes. I'm not talking to the definition, you know what I'm talking about. I mean, we're about we did not use share and follow, for example, with our elementary school educators, whereas the other families did, and I'm curious how you handle things like that, when you're educating Who's getting the education process? I mean, I know you don't diabetes, but we all do this a little different

 

Bob Weishar19:05

100%. So our eventual goal is really to partner with with institutions that do this for a living. And what we've been doing in the meantime is really just relying on best practices material from jdrf from ABA. And so piggybacking on like, what might be a Word document or website, but just converting it into something that's engaging and so kind of the way we see it is chunking all this stuff up so that it's just bite sized pieces that people can handle. As for a content standpoint, absolutely. You're absolutely right. And so what we've developed so far is really the the foundational pieces that anyone might need. So think just checking blood sugar, what is blood sugar, handling a low blood sugar and high blood sugar. But as we go beyond that, that's where it starts to get personalized to each family and child. And what we envision is really being able to personalize that to the the school setting or to the child so that if they're not using a CGM, for example, we're not having a teacher go through a CGM module that that she doesn't need to know yet. Got it,

 

Stacey Simms  20:01

as I put my two cents into your app, which you didn't ask for, you know, things like every family does this differently, or this, this is a choice, right? This particular point of care may be something this family does, or this family does not do that sort of thing.

 

Bob Weishar20:15

Totally, totally. It's been interesting, too, because a lot of the a lot of the school nurses that get it understand that so well, right is that each family needs a little bit different type of handling and treatment, and in the way that they approach it, it's just different. And so I think when we're in person, we naturally do this, as we we have kind of some of this digital education, that's something that needs to be front and center because it's it's too easy to just create a one size fits all

 

Stacey Simms  20:40

approach. I would imagine that the nurses and the school staff and you folks are better at differentiated that than we as parents, right? We tend to think the way we do it is I don't want to say the right way. But we kind of live in this bubble where it's like, well, everybody must be doing it this way. So I'm glad to hear that but as we're talking through it makes me think I bet the nurses For a lot better at knowing that, that I'm even giving them credit for this. Well, it's it's two sided, right? I mean, every family knows their, their own kid and what works. And so I mean, like anything, it's a partnership. And that's what's been really fun with this is really trying to just see both sides and really just putting the kid front and center throughout this so that at the end of the day, that's what everyone cares about. Absolutely. is something that that occurs to me as well. We had an issue in our school district a couple of years ago, you know, when Dexcom share and nightscout technology sharing different ways to look at, you know, continuous glucose monitoring numbers on devices came in. At first, it was kind of up to the nurse and the parent or the staff of the parent to say, Sure, I'll follow you on my phone or sure I'll follow you on my desktop. And we had a school nurse who would follow the children on her personal device and I guess turned it off at night. I really don't know exactly how they did it, but a year or two into this when it became much more standard of care and you know the Dexcom share and follow SR To be even though I know it's not it seemed to be ubiquitous in our school district, the district actually had to make some decisions about technology. And they locked it down, you know, no more personal devices, no more following after school hours. And I think things that were very, very proper, but frankly threw a monkey wrench into existing systems that these parents have been using, you know, have you run into anything like that?

 

Bob Weishar22:22

Yeah, it's actually a big continuing pain point for for everybody, I think because I mean, as you know, I mean CGM is once you once you're used to having CGM, once you're relying on it. It's just it's crazy to think that you're just going to ignore it or turn it off. So what the school districts that we met with we came out with probably 100 or so districts throughout California at this point, and it's all across the board really, and really, from the kind of point of Oh, yeah, we follow every number and of course, we're going to have this on iPads in our office and our in our teachers and our in our classrooms, all the way down to know exactly like you said we're not going to allow this In school, so what we're finding is, I mean, like anything that the answer probably falls somewhere in between where it's, it's not quite, we're going to follow every single time. And we're not going to check every five minutes for a nurse that is already numbered 2000 kids to one, yeah. But it's also not, we have a low glucose alarm, we're going to ignore that. And so that's where we're finding a lot of the happy mediums. And a lot of the districts we saw were at a minimum there, they're responding to alarms, because it's just a no brainer, that we're going to do that. But there's also not a dedicated person watching numbers all day either. And a lot of those cases, it's, it's a lot, a lot of the families that are at home, maybe and they can text the nurse or text the teacher if something's needed, but it also gives a little bit of time back to the kid to to just be in class and be present. So that that tends to be the middle ground. And again, I I don't have answers for this. It's just what I've been seeing. But it certainly is top of mind for a lot of these nurses, a lot of these school districts as they take on some of that liability in their in their minds.

 

Stacey Simms  23:57

Yeah, it's a difficult issue because if you have a tiny little School, our little school district with one kid. No problem. We have 150,000 children in our school district. Yeah, it's a little different. And no full time nurses. I go vote. It's an interesting time. What have you found has been the really great thing about invincible What do people who start using this are testing it? Like what, uh, schools?

 

Bob Weishar24:22

Well, what's been what's been fascinating and so we've been piloting this since last year. And the first test, which was really what school nurses use it, we kind of knew that families would get value from really having this information available to them, and not just to create information, but really just to improve communication so that they're not texting and calling all the time. But what we saw is really, nurses take this as a tool of their own, so that they can better support the kids too. And so that's been really fascinating, exciting to see because just being able to go in person and see some of the glucose shacks and the lunch tracks at school happen and being able to give that information to families, real time Just so that they really just have that peace of mind that their kid is being taken care of and that ultimately, they're safe and happy. Still just scratching the surface on that. And we've got lots of lots of progress to still make but but that's been really exciting to see is really the schools tried to embrace this and, and of course, families and kids get a lot of value from what do you need from the community? Do you need anything? Do you need testers? Do you need feedback? Should we hold our horses for a little bit? Well, you know, it's interesting, because it's it's obviously a tricky time, right. And as we focus a lot of our efforts on schools, it's it's not the best time to have a product that helps families communicate with school in a remote world. So we're very much figuring that out. I think what I would say is what we need at this point is we're still early stages and the product we've built for school. I think for those families that are going back to school in person, we are absolutely looking for beta testers at this point to try it out and and really try to help us continue growing this product and ultimately helping kids with with diabetes and And eventually other health issues too. For those families that aren't we, we'd love to hear from them too, because we like I said, we're early stages. So our ultimate goal is to support kids throughout their health journey. And so we don't want to just build one product that that helps communication between school at home, but really developing something that can help kids start to develop their independence and confidence and managing and eventually inspiring them to do whatever they want to do for any families out there that are interested in that we'd love to hear from them and and have them contribute some their ideas and thoughts. And as we continue to iterate I think we'll come up with lots of cool ideas and things to test out what is unusual. And I mean, what a year this is already. It's you know, as we're recording, I think a lot of school districts and parents are still figuring out what they're going to be doing for the fall. So separate from invincible. You know, it's got to be so frustrating. I'm curious, have you have you talked to any of your local school districts this year? Any advice for families trying to navigate this? Well, I mean, I think the key message is, we're all figuring this out together, right? And there's no good answer. And I wish there was and it really is varied by a lot of the different states and schools that we're working with. That's what they're doing. And for instance, a lot of the California schools we're starting to see are going at least starting remote so that's a that's a challenge but but understandable on a lot of levels too. So I mean, I think above all like like we all know is just work with your school the figure it out, and it's not gonna be perfect. Not none of this is perfect in the COVID world. But um, but yeah, I mean, that I think that's the key message that we're hearing is, a lot of school nurses are just getting this information the same time as families are. And so just so trying to make sense of this all and help help us all together in this process.

 

Stacey Simms  27:41

So earlier, we talked a little bit about that horror story, terminology. And, you know, I shouldn't I wanted to go back to that that term, you know, the horror story, and I have to admit that as I said, My son was diagnosed really little, and we kind of had diabetes down are doing okay, we're growing. When and kindergarten, the idea of kindergarten stressed me out and instilled such fear in me. I still don't know why it was so unreasonable because he had such good care in daycare and preschool. And we had a wonderful elementary school, but we were the only family with type one at the time. And I was so scared, and it was so much better than I had feared. And so when we talk about the fear that parents have of sending their children to school, I always like to use my story. I mean, you know, I think we kind of have to go through this ourselves, right? I can't tell another family don't do it. I don't don't feel what I felt. That doesn't make any sense, right. But learn from my experience, and the hundreds of families that I've been so fortunate to meet and talk to over this last 13 years of Benny having type one diabetes. I don't hear a lot of horror stories. I hear a lot of fear. And I hear a lot of when my child went low at recess, or you know, they didn't spot the high and in my head, I'm thinking I'm not perfect at home with my kids diabetes, like I've missed lows. I've missed highs. We've missed doses we've knocked off sites, stuff happens at school just like it happens at home. And I'm wondering if I'm an outlier? I don't think so, in thinking this way, or most of the families you talk to, are just trying to make the experience smoother and better. And not fighting that horror story to tell.

 

Bob Weishar29:19

Yeah, I think you're absolutely right. I think like any news, the sensational news tends to bubble the top right. And I think probably maybe some percent of families are doing exactly that is sending a kid to the school for the first time is really hard. And again, I'm not a parent, but I can absolutely empathize with it. But really, really there. You're exactly right. In terms of families, we're just trying to figure this out. And it's scary. and managing my own diabetes is scary. I did a diabetes camp a couple years ago. And I think managing for someone else's just added stress, and it's probably 10 times as hard as managing my own and in checking other people's blood sugars and so on. But you're absolutely right in terms of really just the challenge of managing diabetes at school and other places. It's a work in process and it's never perfect. And when you're trusting other people to do that, there's bumps along the way. And I think that's one of our goals is really to develop that trust with school with grandparents with other places that kids go so that families don't need to worry so much and they can just go about their lives and have fun wherever they are.

 

Stacey Simms  30:21

I'm such a fan of something like this because you know, and may sound if you're if you're newer to the show, or you haven't read a lot of my stuff, I may sound very laissez faire and hands off. Right, he'll be fine. I'm not I you know, I worry a lot. I just try not to give my worry to my kid. But something like this, which would help the school understand that the parents not a crazy helicopter parent, right. And also allow some of us who want to kind of over over protect our kids like I've had those instincts where I want to wrap my head in bubble wrap. I feel like this would be so helpful for me, because it would help me hand off more. So I think it sounds It just helps on both ends by educating some school districts. I mean, I'm so lucky I say this all the time, we've been so lucky with our care. I never had to do the big fight. We've had to do some things. I know some parents out there really struggle and having a thing where you could say, No, look, I'm not the only one. And here's a resource can be so helpful. I'll get off I will get off my soapbox. I'm starting talking about me way too much. But I have a question for you about emergency administration of like of glucagon and things like that, you know, there's different ways to do that. Now there's different products. But I'm curious that that is something that is really a non negotiable in my mind that schools need to know how to administer emergency from the time is that something that you help with?

 

Bob Weishar31:39

Yes, absolutely. I think the what we have is really some some basic modules with that we started tentative out but that thing, but absolutely and I think as like back semi unhealed insulin becomes more prevalent that training only becomes easier. But it is it is a challenge, right because as you probably anticipate sticking the needle in an emergency situation is a big challenge. And so I think part of it is reducing some of the fear factor around administering an emergency treatment. But the other part is just repetition and practice.

 

Stacey Simms  32:09

I think, too, as a parent, I would love some backup on that, you know, I trained everybody on the red box way back then there, but you know, even showing somebody had to use the vaccine, as you mentioned, or the G vote, the auto injector, you know, these are so much simpler, but I would really appreciate the opportunity to have something to say like, here's your look at this. You can look at me too, I'll show you how to do it, but I'm not I've never had to do it knock wood. So that's great that you offer that as well. Hundred percent. You said early on that, you know, we want to keep the kid front and center. Are you talking to the kids about what they want? Are you telling the kids about what they need at school?

 

Bob Weishar32:46

Absolutely. So so that those are those are most fun interviews. And so we've done we've done a lot of just in person visits and we get to go to the school and the kids and one of my favorites is got to be there. When someone's first day Back to school with diabetes. And so got to just hear what that was like and his perspective. And so decided to develop some of those relationships around just seeing not only when kids are first diagnosed and trying to figure this out, but throughout and again, we're early I don't claim to have any or, or most of even these answers. But I think that's what gets me really excited is that kids are ultimately our customers. And they might not be paying for any of this or but but ultimately, they're living with this. And so if we can do right by them, I think we've ultimately we've done our job. And what an elementary school child needs is much different than middle school and high school and even college. And so we've spoken to a lot of families, a lot of school nurses, but ultimately putting kids friends center and being part of this whole development experience and engaging them is really our ultimate goal.

 

Stacey Simms  33:46

Can you share a little bit about what the kids say? I mean, I'll give an example. I would sit down with my son and I still try to do this, but he just rolled his eyes at me now. But I would sit down at the beginning of every school year and say, what's the goal for this year? What do you want to do? in first grade, he wanted to eat in the school cafeteria. That was a buys lunch. That was something that we didn't do in kindergarten, because we wanted to keep it super simple. You know, in second grade, he wanted to not have to leave gym class. He wanted to, you know, we love to eat in the classroom, he rarely went to the nurse. But the gym was right near the nurse and long story short that he wanted to just stay there. So every year he had a goal. By fifth grade. It was nobody talked to me about my blood sugar. And I wasn't ready to let that go. So we devised like a thumbs up to his teacher at lunch, which meant Yes, I've dosed you know that. Yeah. So like we we talked about it a lot and was like, What do you want? I'm curious if kids have shared those kinds of things with you.

 

Bob Weishar34:38

No, I probably haven't asked the right question. I'd love that.

I mean, we've asked them about just kind of generally like what they what they go through at school and I think some of those exact same things that you've mentioned around they don't want I think the the common ones that we've heard are as simple as like, Yeah, I don't want to leave lunch. I don't want to leave class early hearing a kid say they don't Want to leave class really is a good thing. But yeah, that's pretty exciting. But just simple things have just, they just want to be with their friends, they want to be in class, they don't want to leave recess. Really, what I saw a lot is really the kind of 15 minute rule that a lot of schools will have around after they check if they're low. And that's obviously a big pain point for a second grader who wants to go go back to recess. So those are the main things that I've heard at least and but I love the the aspect of just asking a goal oriented question on each year because, because that's really powerful. And I've actually heard a few families mentioned the kind of the thumbs up, thumbs down, especially when kids are really just tired of talking about it as important.

 

Stacey Simms  35:39

Yes. And you're so when you find a teacher or a staff member who will work with you like that. That's the greatest feeling in the world. Because they get it they understand that your kid just wants to go through class. They're tired of beeping, they're tired of talking to them. You know, and then when you get to middle school, in high school, you have you know, different parameters all together. This year is so unique. I mean What a time to try to help schools and try to help families. But I love what you're doing here and I'm so glad you shared this with us. You know, we already asked about how we can help us the community or what you need from us. Do you have a sign up? Do you have ways that people can learn more?

 

Bob Weishar36:13

Yeah, absolutely. So if you go to our website it's invincible app.com you have to spell invincible and and also you could also email me Babbitt invincible app calm and, and either one will work and will love to love to hear from you and reach out to any families there.

 

Stacey Simms  36:31

Thank you so much for joining me and spending some time and kind of hearing me also get up and down on my soapbox. I appreciate you

 

Bob Weishar36:37

know, this is great. We'll have to do we'll have to do some some interviews at some point. We'll love to hear hear your perspective as we continue this because I mean, I think that's that's one of the aspects of this that that gets me really excited is I think one of the things that that I learned early on is everyone kind of figured this figured this out for the first time each time and so if we can start to use some of the experiences of families that have been have kids that have been through this and kind of extend those and start to develop some best practices. I think that would just be such a wealth of knowledge that we can pass on the telephone and just help people get through this.

 

Announcer 37:15

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  37:21

More information about invincible and how you can send feedback and all that good stuff just go to Diabetes- Connections com and click on the episode homepage. Of course there's a transcript for this episode as well.

And tell me something good is back this week. We have so many great stories including one about skydiving I'll be honest with you something my daughter really wants to do and I would never do food get to that moment but first diabetes Connections is brought to you by Dexcom. And here's what I have to say about control IQ, the Dexcom G6 Tandem pump software program, we are doing a lot less work for better results. I'm gonna say that again, because that happened in diabetes, less work better results. A couple of years ago, we got the CGM on the screen and Benny like that, but it was more just a cool feature. He really looks at his phone a lot more to check his Dexcom. But the control IQ is taking this to a whole different level. His time and range has increased significantly his A1C has come down significantly since we started the system in January. I love it. I can't say enough good things about it. Of course individual results may vary. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

Tell me something good this week comes from comments in our Facebook group. It is Diabetes Connections, the group and I have so many things to share with you so we'll just scratch the surface with a couple. I'm so glad to bring this feature back. It's always my favorite part of the show every week. Lots of graduation stories.

Janice says, I'm officially done! Macey didn't attend a live ceremony last week. We didn't feel it was safe. But we met teachers that are old schools for a socially distance photo op started with her first preschool teacher. Her school life hasn't been normal once her graduation wasn't either. We turned lemons into lemonade, and Janice is well known to a lot of you even if you don't know her name or her face maybe because Macey is Macey's believers of walk team that's been around for a long time and it's been a lot of good both with Jdrf and with the friends for life conference. So congratulation Macey and well done. Janice

Niva writes in: my 11 year old T1D and her family went ziplining in the North Carolina mountains. We carried all of our supplies and fanny packs. I almost didn't allow us to do it because we were hours away from any medical help. If something happened, everything went great. I'm glad we did it and didn't let diabetes get in our way. And congratulations and boys. They're a great picture. I'll share this offer kiddo just ready to go with a mountain behind them. Oh my goodness. I like the idea of zip lining but I've never done it over. This is I'm familiar with this one. This is a really long one. And I would be nervous not because of diabetes just because I'm a big chicken, which means I would never do this next one.

Oh my goodness. Laura says My brave girl went skydiving So Laura wrote in we all know T1Ds are brave My brave girl went skydiving with her dad last weekend. She has wanted to do this since she was eight years old. She says it lived up to expectations and exceeded them. Mom says I was nervous but her blood sugar's Of course she was really high when she boarded the plane because of adrenaline. But then she plugged her pump control IQ and quickly got her back on track. She gave it two thumbs up and plans to do it again someday.

Oh my goodness. I love seeing stories like this. I thank you so much for sending them in. We got a whole bunch of you know my A1C is great. And you know I'm always happy about that, but I you know me I hesitate to congratulate somebody on their number. I really want to hear the story behind it and what else is going Well in your life, especially now this is a tough time to have any control over anything. And to be doing well like that is great. So share your numbers but share a little bit more about what's going on because I think that's actually more helpful than the number and I will leave you with this one. Noni wrote in not diabetes related, but our one and a half year old is finally eating tiny bites of solid food without gagging and choking. He's a fan of Turkey and green beans. Way to go, buddy. That's awesome. I'm telling you. I will take your Tell me something goods that are teeny tiny accomplishments, the super tiny stuff and everything in between. We have so much to celebrate in this community. I want to help you get the word out about your good stuff. You could email me Stacey at Diabetes connections.com or go to the Facebook group Diabetes Connections, the group join in and jump into the conversation. Tell me something good.

 

Before I let you go, I said I was going to talk about my daughter's college. Now as we're taping this, it is the very beginning of August We are less than two weeks away of bringing her back. She goes to Tulane, and this was her sophomore year. I am very nervous because of everything that's going on. She's going to be far from home. But I think going back is the best thing for her. And boy, this school has been on top of it. And I'm not bringing this up to brag on Oh, this private institution that was able to do this. I'm bringing it because, man, if we could just have this kind of plan for the nation for our states, we would be open so much sooner. I don't get political on the show. I'm not about to get political now. But give me a break. This is all about test, trace and isolate. It's not rocket science to lane is testing every student as they return, and you can't get back in your room until you have a negative covid tests that they will administer. Same thing for off campus students who can't get back into class until you test negative they will be doing monthly tests of all students, faculty and staff. And they're doing randomized daily tests. So if you're selected for daily tests, you will get a text and then you must make an appointment for your test with us. certain period of time I think it's 48 hours, they've put aside a big dorm building. And I think a hotel is in there too, in terms of isolating students who need to be quarantined, and they have another system set up, if someone you've been in contact with has tested positive, they've put up a bunch of outdoor buildings. I don't know how to describe this other than if you've ever been to a fancy golf tournament, one of those tents that is really like more of a building and has air conditioning inside, they've set up a bunch of those for dining and extra classroom space. Some of the classes will be virtual, but she will have in person classes and she will be able to do so many of the things that she wanted to do last year. I'm keeping my fingers crossed hoping that what is basically an experiment right works out but I gotta say, this seems to be a really good and well thought out plan. So I'll let you know we also as a family have a plan for if everything goes well, great. If it doesn't, what we're going to do if she gets sick, obviously we have one plan, but if the people around her if the campus goes in one direction, you really hate that we have to seek these things out. But we do in terms of how we're going to get there, how we're going to get her home, when we're going to leave her all that stuff. Man. I know so many families are making similar decisions. And it's just so frustrating because we know it didn't have to be this way. And that's all I'll say about that. All right, lots more to come in the weeks ahead. You can always find me on social media, Stacey Simms or Diabetes Connections on Facebook and Twitter, on Instagram. It's just Stacey Simms, just the one account there because I got started late on Instagram and I don't see any reason to have two accounts there. As always, thank you to my editor john McKenna's from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  44:49

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

Jul 30, 2020

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

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Transcription In The Works

Jul 28, 2020

Before hydroxychloroquine was part of the national Covid conversation, it was being looked at in studies to see if it might help in the prevention of type 1 diabetes. Recently JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s Hydroxychloroquine (HCQ) Prevention Study. JDRF was kind enough to share the audio with us for this week's show.

Watch the JDRF Facebook event with Dr. Jane Buckner 

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Get the App and listen to Diabetes Connections wherever you go!

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Episode Transcription: 

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider.

This week, we're talking about hydroxychloroquine. Yeah, that's right before it was part of the National COVID conversation is being looked at in studies to see if it might help in the prevention of type 1 diabetes.

Welcome to another week of the show. I am so glad to have you along I am 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 more than 30 years ago, he was a toddler at the time and now he is 15. My husband lives with type two. I don't have diabetes. I have a background in broadcasting local radio and television, we decided to get the podcast, which is now more than five years old. So if this is your first episode, thrilled to have you here, please go check out the website Diabetes connections.com. We have a very robust search we have more than 300 episodes now. So there are ways to get to it by date by keyword by subject matter. If you'd like to go back and start it episode one. You can use any podcast app as well. Wherever you listen to audio at this point, you can get this podcast.

This week's show is unusual in that it's not an interview, as I usually do. Recently, JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s hydroxychloroquine prevention study JDRF was kind enough to share the audio with me. I found this so interesting like most people, I heard About the drug this year because of the whole conversation about COVID and could it treat it and that sort of thing. Many of you probably knew about it long before that in relation to lupus and arthritis and malaria, but I didn't know it was being studied at TrialNet.

So you'll hear from Dr. Buckner 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 is the sleekest looking and most modern meter My family has ever used and it is not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime. Instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention their 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 Click on the One Drop logo.

Dr. Jane Buckner is the president of Benaroya Research Institute at Virginia Mason in Seattle. She's also a rheumatologist who takes care of patients with rheumatoid arthritis and systemic lupus. She studies type 1 diabetes as well and is the co chair of the hydroxychloroquine study at TrialNet. Now, we've talked about TrialNet, and we've talked to TrialNet, or at least the people who work there. Many of you know that group as the people who will test your child's siblings or you or other family members for markers of type 1 diabetes, but they are tasked with the mission of finding out how to prevent type one. And so testing is just part of that. I mean, that's really where they get the ball rolling, but they have some incredible studies and I will link up more information and more episodes that we've done. We've done several with trial that I'm a big fan and I'm a big fan of anybody who takes part in their research going through those studies. Just having a family member tested. I think that's a big deal. And we should applaud everyone who does that.

Quick note, again, this is more of a speech, right? I edited out some of the stuff here to Facebook Live the pauses, stopping as she reads the questions to herself. There are some beeps, there's some audible noises I couldn't take out but it's really fine. All right, here is Dr. Buckner, just after she has introduced herself and her role at TrialNet.

 

Dr. Jane Buckner  4:25

And so we'll talk about a little bit about TrialNet first and then talk very specifically about this prevention of type 1 diabetes using hydroxychloroquine. Why did we pick this drug? How are we doing the study? And then also we'll talk about how to participate and take questions. Type 1 diabetes TrialNet is the largest international type 1 Diabetes Research Consortium comprised of over 100 locations and its mission is to prevent type 1 diabetes and stop disease progression by preserving insulin production before and after diagnosis. And so there's In a series of studies, there's a pathway to prevention. That's what we call a natural history study where we screen people who are at very high risk for developing type one diabetes, and we monitor them over time. We also do intervention trials in new onset diabetes. And we are now doing trials to prevent development of diabetes.

The other part of the work we determine that where I've been really involved over the years is what we call mechanistic studies. When we do a clinical trial, we can go back to the lab and we can look at the blood samples from patients and try to understand why a certain intervention worked are help slow the progression of diabetes or loss of insulin production, or why it didn't work. And so that's where I've been involved over the years thinking about type one diabetes and what got me interested in this clinical trial.

So why is TrialNet testing hydroxychloroquine to prevent type 1 diabetes? The first thing we need to talk about is thinking about type 1 diabetes. As a disease that progresses over time, we know people are born with a genetic risk, particularly relatives of individuals with Type One Diabetes children, or siblings of individuals with type one diabetes have a much higher risk of getting diabetes. And that's because of their genes. We know at some point along the way, in some people who have that genetic breast, their immune system gets activated, and they begin to develop immune responses that target the beta cells in the pancreas.

What we've learned over the years, with the studies done by many scientists, but including those in town, that is that there's several stages to developing diabetes. There's stage one, which is where people have to autoantibodies but their blood sugar is still normal, and their pancreas is still functioning well, they don't know that diabetes, but in fact, they are on the road to developing diabetes and it's just a matter have time, at stage two individuals have these auto antibodies, that they now are starting to have abnormal blood sugars. And finally, at stage three is when we think of the classic clinical diagnosis of diabetes where individuals require insulin.

Well, so the goal is actually, in this study, to prevent people from going from stage one, to stage two or stage three. The idea is if we treat people early at this very early stage of diabetes, where they have the immune response already targeting their islet cells that make insulin, if we could stop it from actually continuing, then we could actually keep people from getting clinical disease. So that's our goal with this study. So why did we pick hydroxychloroquine and in part of the story here is that I'm a rheumatologist and rheumatologists use hydroxychloroquine to treat many autoimmune diseases, particularly rheumatoid arthritis and systemic lupus, it's an oral therapy. It's a pill that you take once or twice a day. And it's used in these diseases and has been used Actually, it's a drug that's been available for over 60 years, initially developed to treat malaria. But in studies used by rheumatologist, it's been demonstrated to be very useful in rheumatoid arthritis and lupus. It's FDA approved to use in children and in pregnant women. And I have to tell you, it's not common a drug is considered that safe to do both of those.

we know a lot about this drug. We know a lot about how it works, but more importantly, we know about side effects with this drug. So why should we think about it? Well, there's clear efficacy in lupus and rheumatoid arthritis that we know and I'm just going to say that one of the things we also know about lupus and rheumatoid arthritis is that there are diseases where people make auto antibodies that target different parts of them. body. We know those autoantibodies happen before individuals come in to see their doctor with these diseases and they predict development of the disease. There's been small studies that have been done that suggests that taking hydroxychloroquine before someone who gets a disease, let's say they have their very high risk for the disease, they have a relative who has rheumatoid arthritis or lupus or they have some initial signs of those diseases. And these early studies suggested that they may well prevent development of the full blown disease. And actually this idea of using hydroxychloroquine early before people develop clinical disease has also now part of large clinical trials in both individuals at high risk for rheumatoid arthritis. And a study for people at high risk for lupus and the rheumatoid arthritis study is called stop ra where individuals who have auto antibodies or have relatives and are at various high risk for the disease or start on hydroxychloroquine early and they're following them to see if they develop rheumatoid arthritis or if hydroxychloroquine actually prevents the disease.

at trial that we were talking about what would be a good intervention to use to try to stop that progression from stage one to stage two and stage three, what would be safe enough for us to give children and people who were otherwise healthy, and also had made sense from an immunology point of view, and that's why we chose hydroxychloroquine. What we're doing in this trial is thinking about how type 1 diabetes starts, and that stage one where there's two or more autoantibodies, but normal blood sugar, and our goal is to stop at that point so that we can maintain a normal blood glucose and stop beta self destruction. The goal is to delay conversion to stage two and that would be having auto antibodies and abnormal glucose tolerance and to maintain that current level of beta cell function. And so the way we design this study was to actually look for individuals who are participating in the trial on that pathway to prevention, who we know have two or more auto antibodies, but still have normal glucose tolerance. So they're stage one.

And because this drug has been used in in young children, we're able to start as early as age three. But we also are including adults as well. This is a study where it is placebo control, two out of every three participant will get the study drug, and the others, one third, we'll get received the placebo. This is really important in clinical trials, because we have to know not only if the drug works, but we also need to make sure that it doesn't cause harm. And this placebo control group helps us know both of those answers.

This is a randomized trial. So a computer randomly selects who gets the study drug, and it's double blinded. That means no one knows Who is in which group until the end of the study and that includes the clinical coordinators, physicians who are participating in working with study participants. So some of the details and safety has become an issue that's much more on people's mind because of the use of hydroxychloroquine in the setting of COVID-19. And I can speak particularly to that as well. But let's first start by remembering that hydroxychloroquine has been used for over 60 years and is FDA approved for pregnant women and children. When we started considering the use of this drug. We worked within TrialNet with a group of infectious disease experts for study design, and we also monitor all the side effects throughout the study. Importantly, we know from treating particularly patients with lupus and rheumatoid arthritis, that adverse outcomes or safety issues are linked to the dose of the drug being used, the length of time that it's used other medications that a patient may be on.

So when we do this study, we screen people who are participants for potential complications at the time that we randomize them. But we continue to follow for those at the time of the study. And I can go into more detail about this. Since we've been recruiting for this study. For over a year. Now, we now have a very good sense as well, not only from historical results with our patients from the rheumatology clinics, but also from the individuals participating in this trial. And just a few things about this trial. So, participants, this is a capsule that's taken by mouth as instructed. And our goal is to have people in this study taking this drug until they progress to stage two, that's the abnormal glucose tolerance, or stage three, which is diabetes onset. So it's it's a study where the participants are in it for several years. They have an initial study, visit, followed by three months, six months, and then every six months we see the participant in the study visits last three to four hours. And of course, all of our treatments and exams are provided at no cost.

Here we have one of our study participants, Laila who's for taking her study medication, and you can check out her video online. Just a little bit about how to participate. The first step is to enter pathway to prevention, which is the TrialNet study where anyone aged two and a half to 45, who has a sibling, a child or a parent with Type One Diabetes is encouraged to participate and be screen. But we also broaden that to include not just your parents or siblings or children, but also Uncles, aunts, nieces and nephews. And we have quite a large group of participants in this and this gives us the ability to screen to see if you would be a person who has those two auto antibodies and would be qualify for this study. And to do that you can visit the trial on that site that we do home At home test kit. So this can much of this initial work can be done at home. And then we can have you in touch with people to understand if you would be a good participant for this.

So I'm going to take questions now and I will go into more depth about hydroxychloroquine safety and try to answer other questions. The first question is, do you have any intervention trials currently recruiting? And so this is actually a really interesting question because TrialNet always wants to have intervention trials ongoing. So we have a series of trials in nuance at type 1 diabetes, and then we had just opened another trial in individuals who had to auto antibodies and abnormal glucose tolerance. Some of those trials are on hold, and that is because of the covid 19 pandemic there has been concerned about using medications that may suppress the immune response. So currently We are following the patients who have already received treatments. But we are not bringing on new subjects at this time. I would say our goal is to do that once we have a better understanding about how to move forward. But really interestingly, hydroxychloroquine is not considered immunosuppressive we started that trial in the summer of 2019. And we have continued that trial throughout the pandemic because it was felt that it did not put our our subjects at increased risk. And of course, at one point, there was thought that it may be helpful. We have asked our participants to continue taking their medications as prescribed throughout this period with the COVID-19.

Yeah, so one of the questions is Could this be of any benefit to long standing diabetes patients who have no c peptide? And part of this issue is this beta cells that are stunned, so may be able to recover? That's one of those really interesting areas, and I think that the jury is out on that. Part of the reason that we decided to study hydroxychloroquine in these individuals who are in stage one is we think the role that hydroxychloroquine may play may stop the immune system, what we know is the immune system gets activated, and then it's a little bit like a steamroller, increasing and increasing in its aggressiveness against the body and against particularly the beta cell. And our hope was to stop it early before it picks up too much speed. And that's what we think hydroxychloroquine doesn't mean that it might not be helpful in this setting where we may have beta cells that are our stun and and it may become useful in individuals where once we've cooled down the auto immune response, maybe with another medication, that this may be a drug that we could use long term to maintain that kind of tolerance or quiescent stage. So I think we'll we'll have a better idea when this first trials done.

Yeah, so the next questions is have have we seen any patient with negative side effects that you've heard so much about, and I know a lot of people are nervous because of what they've heard on the news, and so I kind of wanted to relate our experience. The first thing I could say is that we have our experience with our subjects in this trial, but as a rheumatologist, I have been prescribing this drug for, I hate to say it, but almost 30 years. So I've been been taking care of patients with lupus and rheumatoid arthritis who have been taking hydroxychloroquine throughout my career, because this is a drug that's been used for a long time. And I'd also like to say those patients take the drug, many of them for 10 or 20 years. So my experiences that and our experience with our subjects in this trial is that some people do have some side effects. Most of them tend to be more like some mild gi upside, initially, maybe a side effect. We also have to watch out for the eyes in this setting. We know that long term use of this drug can impact the eyes, so participants get regular eye exams as part of the study. So if there's any problem, we capture that quickly, and we have ophthalmologists who help us with that. There's also been concerns about cardiac arrhythmias with this drug. And that's been, you know, highlighted in the setting of COVID-19. I think it's important in that setting to understand that dose matters. And in some of those clinical trials, where we saw cardiac arrhythmias in COVID-19 patients, the doses were higher than we are using. The second point is that those individuals are under are extremely ill and in fact, are having some potential cardiac problems as part of their disease. So I think that's really quite different than what we see in a pattern in our patients in this trial and what I see with my patients with rheumatic diseases, that being said, the other issue is when you give this drug with other drugs that can aggravate or bring out a potential a rasmea We have been very careful throughout this study to have a large list of medications, we track those. And if it if one of our study subjects takes a medication we think could complicate it, we may hold the drug for a while. Right? And then one of the questions is about the dose, and we do select a dose for patients based on their weight in size. And the dose that our patients, if they're a full sized adult would take would be the same as the dose that I would be giving a lupus or an RA patients, for example. The next question is, is there any promise here that if beta cells are replaced in someone who has diabetes that hydroxychloroquine could prevent those new beta cells from being killed off? It's another really great question that we think about a lot at trial that, you know, again, I think with islet cell transplant, or pancreas transplant, you're probably going to need a stronger medication to control the immune response against that transplant. So at this point, I would say it could help After that initial immune response was controlled, but probably not initially, I would suggest that we would need a stronger immune suppressant drug because it's a transplant.

I have a question about Can I tell you about why I think hydroxychloroquine will delay and prevent onset of type one. So that is one of those very interesting questions. So we've been using, as I said, hydroxychloroquine in the setting of lupus and rheumatoid arthritis for I think, 40 years in Rheumatology and myself for 30 years, and we've learned a lot about the immune system over the last 40 years. So when it was first used, really no one knew why it worked. They just knew it worked. And of course, that's the most important thing for patients. What's happened as we've gotten smarter about immunology is people have devseloped a much better understanding particular about why hydroxychloroquine work and lupus We think the auto antibodies are triggering an inflammatory response. And hydroxychloroquine actually acts within the cells to stop that triggering of the response. It's something called toll like receptor activation. So we think it, it stops some of that kind of unusual or abnormal activation of the immune system. But it also has an impact on how the immune system kind of shows that something's foreign and you should attack it. And hydroxychloroquine can actually impact the ability of presenting what we call self antigens to the immune system. And I think that's a really important part of this communication. There's a communication between B cells and T cells that I think it's really vital that it's impacting, and that's why I think it's going to be important in people who only have two auto antibodies but haven't moved further yet. One of the things we might think about doing after this trial is to even go earlier for those people who only have one auto antibody, who may not get Type One Diabetes if we could get in there even sooner, and we think that might be a good place to intervene. The question is, how long after diagnosis can be enrolled in a new onset study and each study that we do we have a particular plan to enroll for new onset. And so I think that is important to be in touch with TrialNet and find out what study would suit you if you have been very recently diagnosed. There are typically some studies that quite a few studies that enroll but we also are interested in some studies where people who've had diabetes for a while may help us understand the disease better. One of the other questions is have we thought about trying this in stage two or stage three, and we have not we have talked about where we think this drug would be most effective, and we thought stage one or even the single autoantibody high risk individuals would be where it would be be most effective. So we wanted to do that trial first. And if it's effective there, we would obviously then think about moving in into later stages. Those are all the questions I've seen. I really appreciate that you've taken the time to spend with us today. To hear a little bit about this study. I'd like to encourage anyone who has more questions or is interested in participating in any of the studies and trial mat, whether that's pathway to prevention, or one of our clinical trials to please contact TrialNet. Thank you very much, and I hope you have a great rest of your day.

 

Announcer  24:40

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  24:46

More information and if you'd like to watch that as well, I will link it all up at Diabetes connections.com. But as usual, with our episodes beginning in 2020, we are providing transcripts for all of these episodes. So if you know somebody who would rather read Then listen, go ahead and check it out. And if that's maybe you, you can go back. And listen, I'm trying to add in more transcripts for previous episodes, but it is from January of 2020. On if you're looking for that, and I have a question for you, and I have a deal for you. So stick around for just a moment.

But first diabetes Connections is brought to you by Dexcom. And we started with Dexcom. Back in the olden days before share, gosh, we've been with them for a long time. So trust me when I say using the share and follow apps make a big difference. Benny, and I set parameters now but when I'm going to call him how long to wait, that kind of stuff. It helps us talk and worry about diabetes less. You know, if he's asleep over away on a trip, it gives me so much peace of mind. It also helps if I need to troubleshoot with him because we can see what's been happening over the last 24 hours and not just at one moment. The alerts and alarms that we set also help us from keeping the highs from getting too high and help us jump on Lowe's before there were a big issue. Internet connectivity is required to access separately Dexcom follow app to learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

So I said I had a question and a deal. So here's the question. What do you think of episodes like this, where it's not an interview, but I'm bringing you information that has been, you know, already put in the world via a Facebook Live or somebody giving a speech or a conference presentation, whether it's virtual or in person? Do you want to hear more of that I've done this sporadically over the years. Personally, I love it because I can't catch all the stuff that's going on right now. I did not see this Facebook Live as it was live. But I wanted to make sure to catch the information. So if this is something that works for you, let me know because I'd love to reach out to more diabetes organizations that are doing things like this and see if we can give a kind of a second life to some of the stuff that they've done. We don't want it to be one and done right if it goes out there once did it work for you? Is it okay that you didn't see her She did have slides. I listened without the slides. And I didn't think it really made a big difference to me. But if it did to you, if you felt confused, let me know. I'll see if I can grab the PDFs from JDRF. I'm not quite sure how to share those in the show notes. But hey, we can try. So that's the question.

And the deal is the world's worst diabetes mom is on sale. And this is kind of a two fold thing. So it's on sale at the website at Diabetes connections.com. If you use the promo code FFL2020. That was for friends for life, the virtual conference that happened earlier this month, that promo code will save you $4 off of the cover price. Again, it's FFL2020. And Amazon has also dropped the price of the paperback as of this taping. Amazon doesn't alert you when it does this. It just it just does it and I have a feeling it's because of the special we ran in the sales were making on the website, but they dropped it as well. And if you're a Prime member, of course you get free shipping. So I sign books that come through the website. I can't see seiner personalized books that go through Amazon, but it's on sale in both places. No promo code needed on Amazon do not know how much longer it'll be for sale like that on Amazon. But the ffl 2020 promo code is only good till the end of July. So go get it. Speaking of friends for life, the next episode should be just a couple of days from now I'm working on a bonus episode of the faithful Woods squares. This was the game show that I did it friends for life, and we're putting out video form but I'm also going to put it in podcast form just to cover all the bases. So hopefully that'll be out in just a couple of days. And you can enjoy that it really was fun. I'm so glad it turned out well, what are we going to do next? I got more requests to do Hollywood Squares again or FIFA with squares. I usually do a take off of NPR is a Wait, wait, don't tell me as we don't poke me. But I'm kind of thinking about doing some kind of Family Feud?

Stacey Simms  28:53

All right. Let me know what you think. Thanks, as always to my editor John Bukenas of audio editing solutions. Thank you so much. much for listening. I'm Stacey Simms. I'll see you back here for our next episode until then, be kind to yourself.

 

Benny  29:11

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

Jul 24, 2020

Diabetes camp is looking very different this summer as almost every program has shifted to a virtual experience. We talk to the people behind Clara Barton Camp, one of the oldest and well-established D-Camps in the country. Sam Stevens was diagnosed at age 5 and went to Clara Barton that very summer. She says she basically grew up there, becoming a counselor and now a volunteer helping coordinate their very first virtual experience.

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

In Tell Me Something Good, an Emmy and an incredible story of perseverance and survival around COVID 19.

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

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Episode Transcription 

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:17

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:23

This week diabetes camp all right this year is really different. I'm not here to spin it like it's not. But many camps across the country are getting creative, including the people at Clara Barton, who are hosting a virtual experience

 

Sam Stevens  0:34

that there are kids who look like me sound like me act like me have my shared experiences. Even if we don't get to meet in person. I still know that they exist. I still connect with them. I still make friends.

 

Stacey Simms  0:50

That's Sam Stevens of volunteer and counselor at Clara Barton. She was diagnosed at age five and basically grew up going in Tell me something good TV me and an incredible story of perseverance and survival around COVID-19. 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 will be so glad to have you won. I'm your host, Stacey Simms. And if you are a longtime listener, you know that I'm a huge fan of camp, diabetes camp for sure. But regular summer camp, you know, any kind of programs that give kids more independence and give parents some time to themselves, which none of us are really having any experience with this, because we're all at home together. But I do love camp and I was so excited to have an opportunity to talk about what diabetes camps are doing in these really difficult times.

Both of my children started going to sleepaway camp when they were seven, eight years old Benny started at age seven for a week long diabetes camp, and they were both set at age eight to go To what I call regular camp, a non-diabetes month long program, and I've talked about that in the past a little bit more and in depth about how we did that. But I actually want to talk about my daughter for a second who doesn't live with type one, because the year she was supposed to go for the first time to regular camp, and the youngest you can be for this camp is eight years old and going into third grade, I want to say, but you have to be eight. And it's an option at that age to do a two-week program, which she was all signed up for. But this was in 2009. And if you recall, we had another big flu scare that year, that was H1N1, that was the swine flu.

I'm amazed that more people aren't talking about this now. Or maybe we did and we've just moved on because been talking about COVID for so long, but they closed down a lot of programs for H1N1back in 2009. And in our area, certainly here in North Carolina. It was a big fear. Now it passed very quickly. It was nothing like what we're experiencing now. But her camp was canceled, and it was devastating. I mean, she hadn't even been to camp. So she didn't even know what she was missing. But you know, we had signed her up. We had talked about it, you know, what was that experience and both of my kids are super independent. So she knew she was going to really enjoy camp. So as they called it, Swine 09 happened, she still has the T shirt from this camp, they sent everybody who missed camp that year, a T shirt with 09 on the back, my goodness. But it's wild for me to think that she missed her very first year of camp because of it. And Benny is missing his very last year as a camper at this camp. At this age. He's 15. He's going to be a sophomore in high school. That's your last year as a camper, then you can continue on with a special program next summer. And then after that, a counselor and training etc. But she says he's going to do which I think is great. I know there's been a lot of disappointment and events canceled. And this is just one of many, many, many things, but especially with diabetes, right camp is such a big influence on so many people. And I'm thrilled that so many camps are going to try to do it virtually, of course, it's not the same when you're talking about connection. I think it's wonderful. So we'll talk about that in a minute.

I have to tell you about something that has been sitting on my desk. Actually, it's a wrapper that's been sitting on my desk to remind me to tell you about this because we hated it a long time ago. But I've been meaning to tell you and this is gonna sound like a commercial and I guess it sort of is, but they're not paying me. But I wanted to tell you about NRG foods, it's the letters N R G. And I'll put a link in the shownotes Chris Ruden, who has been on the show before, tremendous athlete, world record holder. He has a prosthetic arm, you know, I'm talking about and if you don't, I will also link up our past shows with Chris Ruden. He was on the Titan games last year. really remarkable guy. He sent me a bunch of samples of the NRG bytes. Really, they were for Benny, I think he sent us six of different flavors, and Benny only got two because my husband and I got to them first.

They're really good. They're a smaller portion size than usual. And of course, that's how they're designed. They didn't want them to be too caloric. They're a size that's designed for, you know, a post workout replenishment. I guess we'll do a post podcast recording replenishment because I didn't work out when I eat them. But I thought they were really good. We've tried a lot of high protein bars in the last couple of years, as Benny has really been experimenting with different things that he likes. He is trying to be much more conscious, not just of carbs. He doesn't eat low carb, but of calories because he has lost some weight and he's doing really well. So the energy bytes, he said, were really good. And his review was, he does think they're too small. This is a 15 year old, but he likes that it has the protein. And he also says he understands he thinks why it's small, because you don't get that protein aftertaste. He says a lot of high protein bars that we've tried just are full of protein and you get this weird, he didn't describe it as chalky, but I would like a weird protein taste. So these are really good.

They come in three flavors, peanut butter, cran-almond and chia chocolate and I'm not a big fan of chia. So I was very skeptical, but I didn't taste it. I just tasted the chocolate and I was impressed with that. I do have a promo code for you. I'll link up the website for energy dash foods dot com and if you use the promo code Simms, that’s S I M M S, you will save 20% I told Chris I was going to be talking about it on the show, he offered the promo code. So I just wanted to get it out there and tell you what we thought. It's always really nice when you can support a business that a fellow person in the diabetes community is involved with. So thanks, Chris for sending those all the best with it. And again, all the info in the show notes.

Speaking of products owned by a person with diabetes, you know about this right Diabetes Connections is brought to you by One Drop, and 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 the sleekest looking and most modern meter My family has ever used. And it's not just about the modern meter setup, you can send your readings to the mobile app automatically review your data anytime. Instantly share blood glucose reports with your healthcare team. It works with your Dexcom Fitbit or Apple Watch and they're awesome test strips subscription plan is amazing because many test strips as you need and they'll deliver them to your door did I mentioned the CEO lives with type one, One Drop diabetes care delivered, learn more, go to diabetes. connections calm and click on the One Drop logo.

 

My guest this week has been going to camp for as long as she can remember, Sam Stevens was diagnosed with type one at age five. She went to diabetes camp that summer and never looked back. This year, she's helping run something completely different, a virtual program for kids at Clara Barton camp and camp Jocelyn, both programs of the Barton center for diabetes education and independent nonprofit.

There are a lot of other camps with virtual programs this year, and a few that have gone ahead with their programs in person. Now, I asked about that in the Facebook group, which you should join if you're not already in it's Diabetes Connections the group. So you can find lots of information on camps there and just see what other people are doing around the country. Our diabetes camp program was cancelled this year. But Benny had decided not to go this year, which made me kind of sad he'd been going. He was seven years old. He was set for the regular camp I talked about earlier. And that was scotched as I mentioned that I am excited that the camps are going ahead to at least try to help connect campers with their community. So here's my talk with Sam Stevens.

Sam, welcome to the show. I know this is a very different kind of summer. So I appreciate you taking the time to kind of explain things. Thanks for being here. My pleasure. Thanks for having me. Before we jump into what what Barton and so many other diabetes camps are going to look like this summer. Let me just ask you a couple of quick questions about you and your experience because you have been going to diabetes camp, probably for as long as you can remember. Do you actually remember your first summer?

 

Sam Stevens  8:32

I do. I remember my first day. I remember where my bed was. I remember my trunk that I covered in stickers when I was six years old. And I remember it being the best experience of my life.

 

Stacey Simms  8:48

You were diagnosed right before you went to camp where you were just five years old when you were diagnosed, and then that was maybe the first summer that you were able to go.

 

Sam Stevens  8:54

That's exactly right.

 

Stacey Simms  8:56

Do you remember anything about your diagnosis at that tiny, tiny age? I mean, that's really young. To think back to but I'm curious.

 

Sam Stevens  9:03

Yeah, I actually, I remember being in the hospital, I remember that there was a fish tank in the hospital and the children that really liked going to. I remember being confused. And then I remember, you know, life obviously being different. But I think, I think in a way, I'm lucky that I got it earlier before I could really remember the stark difference between before having diabetes and after having diabetes. So for me, it's always just been normal life for me.

 

Stacey Simms  9:40

It does seem to me that going to diabetes camp can make it seem even more normal. I don't have diabetes, but just in my son's experience. It's so nice to be around other people going through the same thing, especially when you're a little kid. Did you know anybody at home who lived with type one, or was it just the summers for you?

 

Sam Stevens  9:57

It was just the summers. I didn't know Anyone and so exactly like you said, going to camp where everybody just gets it. Everybody just understands what you're going through when you say that you feel low or high you need to eat or can't eat is was so comforting to me and really taught me a lot I learned most of what I know about my diabetes management from camping even from my my friends and community in the years since camp

 

Stacey Simms  10:31

you I have to tell you I'm struggling a little bit with doing this interview this year because I'm such a big fan of camp and every year we talk about diabetes camp but I always in the back of my mind hope that a parent that has not yet sent their child will listen and feel really comforted and excited about camp and and really make the dive in and and as I'm talking to him thinking, but there is no camp this year. But there is kind of Camp let's let's talk let's try to look on the bright side of this because I know Gosh, so many camps. And people like yourself are working so hard to make sure there is a camp experience. Let's just start and dive right in. What is Barton doing this summer? Tell me about your virtual camp.

 

Sam Stevens  11:11

Great. So, Barton is running a virtual camp. What happened was a bunch of volunteers or alumni who you know all have been keeping intact, especially since the pandemic started, and a lot of people have sort of reconnected with friends. We all heard that camp was very, very sad, we canceled this year. And because it had such a profound impact on each of our lives, we got together and thought, hey, what can I do to help campers be able to experience that can't magic and not lose out on all of the value that they would without campus?

 

Stacey Simms  11:54

So this is pretty much a volunteer effort that that came about from from the alumni.

 

Sam Stevens  11:59

This is 100% volunteer effort sorted by alumni. And this also includes people who would have been counselors or admin staff to so multiple camp generations if you will.

 

Stacey Simms  12:15

I love it. That's fantastic. So you know, there's not going to be the campfires and the, you know, the bunks and all the stuff that happens in person. I assume it's more than a couple of zoom calls. Can you tell us a little bit about what you're planning?

 

Sam Stevens  12:29

Definitely. So we actually are going to have campfires and we are going to have cabins and of course they won't be in person. But what we've done is we've created a program where every day for a couple of hours a day, between two hours a day we have various different activities. those activities ranged from your typical, you know, arts and crafts or dance classes and stuff like that. To cabin time where we give you know every all campers have been assigned to cabins, and each of those cabins have dedicated counselor. So the counselors during their cabin times will facilitate definite games and icebreakers and pen pals and things of that nature. And then the third pillar is the all camp activity. So the campfires and the dance nights. And all of our amazing volunteers are recreating each of these programs virtually.

 

Stacey Simms  13:28

That's so great to hear. What's what is your hope for a new camper, right? Somebody who's seven years old and was just diagnosed or somebody who's 14 years old and doesn't know anybody, what would be your hope for a virtual program for somebody like that? Who doesn't know anybody.

 

Sam Stevens  13:44

So my hope for a camper who is brand new to camp is that they get that same feeling that I am not alone, that there are kids who look like me sound like me, act like me have my shared experiences Even if we don't, you know, get to meet in person, I still know that they exist, I still connect with them, I still make friends, and have that shared deep commonality of having that this profound thing in common. And I think it's a great way for people to improve their so especially if it's a younger kid or someone who just hasn't gone to camp before they can learn about it, they can experience it virtually. And then oh my gosh, this is how great it is to imagine how fun is this person and also get to experience it. And we're going to have sessions with health care providers, who will be there to answer questions and we do what's called scoop sessions, which it's an acronym for something and honestly, it's been around as a camper, and I have no idea what it stands for, but it's always

 

Stacey Simms  14:58

great.

 

Sam Stevens  14:59

I think Maybe someone older and wiser than what it stands for. But that's rare. Health Educator will talk to campers either kind of in a question and answer thing. campers can kind of submit questions anonymously that they might not be comfortable talking about with, you know, a parent or a doctor that they need some more, you know, pure conversations about it can be a nutritionist to help teach carb counting, you know, things of that nature that I think especially for new campers, it just normalizes it, right? If if you just kind of are in your own isolated life, the only real touchpoint you have with your diabetes management is most likely at your doctor's office every couple of months, right? Sometimes people are lucky enough to know other people with type one or go to school with other people. But a lot of times kids are just isolated. So this is a real exposure to the fact that kids are not alone.

 

Stacey Simms  16:00

And I wonder too, sometimes there's a misperception that diabetes camp is all scoop sessions, right? It's just all diabetes education, you're gonna con gather round kids will sit in a circle and talk about how to change an inset. Yeah, where the opposite is really, really true. I would imagine that even in those sessions, it's more, you know, it's learning in a fun environment. But every diabetes camp is a little bit different. You know, so I assume that the learning experience at Barton is kind of just melded into the camp experience. Has that been your understanding and experience over your time there?

 

Sam Stevens  16:34

That's exactly right. We, it's it's integrated really organically on a daily basis in the sense that the cabin will do check their blood sugars together and give their insulin together which is constantly an education, educational opportunity for campers, especially those who are less familiar with pre qualifying or carb counting or Doing slight changes, etc. And again, that's just integrated throughout the day. So there's just a constant learning element, as well as the more times that are set aside for doing an education session. And while of course campers are, you know, often like, I don't want to go to school for this class, whatever the the team, you know, works really hard to make it fun. So we always play you know, games like diabetes trivia, or you know, card counting bingo and stuff like that, to really try to make it can't be. Yeah.

 

Stacey Simms  17:37

So let's talk about your camp experience because you were a very young camper. And you've obviously stayed you, you know, you were very young camper. Then I imagine you're a counselor, you're a volunteer, volunteer lead of this whole thing now. Um, why did you stick around for so long?

 

Sam Stevens  17:53

The people, it's honestly the people who I've met. They're their family. To me. We always camps family theory. These are people who have mad and grown up with that I literally trust with my life. We will just always be there for each other. And that's all because of camp. I would have never met these people, I would have never learned what everybody has been able to teach me if it weren't for camp.

 

Stacey Simms  18:22

And I know this year is unique. But is there anything that you'd like parents to know, whether their child is having a virtual session with diabetes camp? I mean, you know, generally, this is the part of the interview where we try to tell parents, it's gonna be okay, drop them off for the week, go on vacation. You know, obviously, none of that is happening. But I'm wondering if you do have a message for parents in this really unique year?

 

Sam Stevens  18:45

Yeah, I mean, yeah, my message is that first of all, we are just as sad.

 

Your campers, especially the counselors who were supposed to be staff this summer. I would have been absolutely devastated. I was planning on being a counselor, which was honestly even more fun than being a camper. And I learned that it was canceled. So everybody, you know, everybody's heart is hurting just the same thing, entirely a labor of love. People who I think, you know, similarly to me share the same experience from camp and really care so deeply and truly about it that we want to take the time to give that back and make sure that kids can experience it this summer. This is our first time doing this. I think it's kind of everybody's first time doing this. So it won't be perfect. We will, you know, kind of struggle through things at the beginning. I'm sure. We're all gonna be learning as we go. So, you know, I I asked that to be patient. As you know, this is a process that we're all learning together. But I think that at the end of the day, there will only be a positive experience for kids.

 

Stacey Simms  20:00

One of the things that my son really learned or at least came home, feeling like he was more confident about at diabetes camp was just meal times. You know, he was young when he started to go. Our sleepaway camp here starts at age seven, I think at the youngest. And he came home much more interested in what are the carbs on my plate, and I'm going to add them up myself and that sort of thing. And I'm sure that virtually things like that are challenged, but are you are you going to be addressing kind of what they're eating? I picture the kids like showing stuff on the screen about

 

Sam Stevens  20:32

  1. So we won't be we won't have that level of involvement virtually, just as a nature of kids being at home and parents having different schedules with their own jobs, and you know, the volunteers having different schedules, so coordinating meal times would be really difficult. But I think that's a great idea to bring up with the counselors and maybe in a cabin, an activity could be okay. Send a send a picture of what you ate on the carb count to share it with everybody. And that could be a really good way to integrate that.

 

Stacey Simms  21:08

stump the counselors like what do you think this carb count is good? like peanut butter

 

Unknown Speaker  21:15

Good luck. Exactly.

 

Stacey Simms  21:19

That's really funny. Those are the experiences that only people with diabetes understand. Right? Those are the things you can kind of only do it diabetes camp. Um, can you tell us a little bit about some of the activities that you have planned? I mean, I'm just because I think it's hard for sometimes people to kind of understand what you see virtually, like, what can What can we do? So can you tell me a little bit about a couple of activities?

 

Sam Stevens  21:42

Yeah, definitely. So, so to start, each camper is being sent a camp supply pack, which has a couple of different activities that will set them up to be able to participate. So one example is In the arts and crafts, we're going to be building pipe cleaner ninjas. As well as doing the hand model with the, you know, just paper and colored pencils and straws and beads and pipe cleaners that are all being sent to campers right now. We're doing a game one of my favorite games, that's called Dutch auction.

 

Unknown Speaker  22:27

And the

 

Sam Stevens  22:30

this whole thing I would actually say kind of originated from Dutch auction, too. Best camp friends put together a group of alumni over Facebook, and said, Hey, does anybody want to play virtual Dutch auction next week? And there was about 20 of us who said, Yeah, let's play. And if you don't know what Dutch auction is, there's a couple ways that you can play it, but the way that we played it is that each round one person would be the judge, and the judge would come up with some sort of object. So it could be a pirate ship, or

 

something that floats are as kind of esoteric creative, things like that. And everybody gets three minutes to run around their house and create that object. And then everything comes back to the computer and presents what they made. And the judge awards, the you know, the best interpretation of that object, and then that person becomes the the judge. Nice, we had such a blast playing it. And that group of alumni you know, continue to stay connected over Facebook and it was that group that When we all heard thought camp was canceled this year, we got together and said, hey, what can I do? So we definitely wanted to make sure to include Dutch auction and virtual camp because who knows what, you know what genius will will come out of it.

 

Stacey Simms  24:18

But that's great, because it kind of all started from that idea. Right. You had you had an actual game, and then you wanted to get together and play it online. And then it came from there. I think that's fantastic.

 

Sam Stevens  24:29

Yeah. And I want to give a shout out to Melissa Moulton and Julia Roboto. Who are the the mothers of this, of this game and this group.

 

Stacey Simms  24:42

That is great. You know, hopefully, I think we're all keeping our fingers crossed that next year, things will go back to some kind of normal and we'll have you know, regular camps and kids programming and we can just focus on regular old diabetes stuff. I we don't know each other very well, Sam. But I assume that you are a confident and competent adult. You know, who is managing your own type 1 diabetes without your parents calling you every day to say did you bolus I mean, they might check on you, but they're probably not on you as much as they were when you were 567 years old, as much as

 

Sam Stevens  25:17

their wishes that he could call me every day.

 

We have we have cut that cord correct.

 

Stacey Simms  25:25

Listen, as a mom of a kid with type one, I sympathize. I get it. But not to put too fine a point on it or lead you. But it just does seem to me that diabetes camp does help so much in terms of that confidence and independence. Can you just speak a little bit to that before I let you go?

 

Sam Stevens  25:42

It absolutely does. As I've, as I've touched on. I think there's the two most important parts that have diabetes camp that really help kids with type one develop their their competence is number one. Just the the education part but also the policy of the education part. So just being you know, integrating and making diabetes management such a normal part of day to day and seeing your peers do it with you, they'll get a lot of confidence. And especially working with, with nurses and doctors and nutritionists, and having, being able for kids of all ages to have learning conversations about, Hey, I think I think I need 15 grams of carbs are going low in the afternoon, you know, let's let's work as a team to, you know, change my diesels, those kind of conversations are really great skill building experiences for kids that definitely build a lot of confidence with their diabetes management. And the second part is really the emotional support really giving people The confidence that just because you have diabetes, you are not broken, and you are not alone. There are hundreds of kids like you who all have fun. And all can be, you know, can giggle just as much as a kid without type one diabetes or go to, you know, go to dances and play sports, do arts and crafts, and do you know, all these other things that kids without diabetes do that throughout You know, every other every other month throughout the year, it's really easy to forget. And it's really easy to feel so different and so other eyes. So having that community of peers builds so much confidence on that emotional level.

 

Stacey Simms  27:44

That's great. And then on the our parting note here, there are a lot of great diabetes camps out there. I will say that my son's is the best. I love the people. It's the best in the entire country. Tell me why Barton is the best

 

Sam Stevens  27:57

to you. The people People that again I am, I'm a five year old camper who is now a 30 year old volunteer on campus and with me every single year of my life, it has that much of an impact. My, my, my friends have have grown up with me. Throughout all of those years, I'm sure that each diabetes can provide a lot of those really strong friendships, but I just can't imagine any place more special any people more special than Barton.

 

Stacey Simms  28:38

Well, that's fantastic. I'm so glad you came on. Good luck with the virtual camp. I'm thrilled that you did it. I know. It's gonna mean a lot to the families. So thank you so much, Sam, for coming on.

 

Sam Stevens  28:48

Thank you so much for having me and I will keep you posted with how everything goes.

 

Unknown Speaker  28:58

You're listening to Diabetes Connections. With Stacey Simms.

 

Stacey Simms  29:03

More information about the Barton program, there are different tracks or at least different sessions I should say. So you may still be able to sign up, I will put the information out there. And again, for other camps, please head over to the Facebook group. And you can check out the listing that is community sourced. So if you have some information you can add to that. I really hope these camps go well. I'd love to hear more if your child has participated in one if you're a staffer at one, and let us know you know how they go, is it something you'd continue even after in person stuff can happen again, I think there's going to be some cool programming coming out of this.

Tell me something good in just a moment. But first diabetes Connections is brought to you by Dexcom. And when you have a toddler diagnosed with type one, you hear rumblings for a long time about the teen years, but when it hit us at full force a little early. I'm so glad we had Dexcom Benny's insulin needs started going way up around age 11. As I said, He is 15 years old, he is 5’11 at least and that means he's grown like eight inches since he was 11. I mean with all the hormone swings, I can't imagine managing diabetes during this crazy time without the Dexcom continuous glucose monitoring system. We can react more quickly to highs and lows, see trends and adjust insulin doses with advice from our endocrinologist. I know using the Dexcom g six has helped improve Benny's agency and overall health. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, just go to Diabetes Connections comm and click on the Dexcom logo.

 

Alright, tell me something good this week. Christina Frank is a news anchor up in Maine. She does the morning news. Boy I did this for a long time. I don't know how early they get up for television. When I did radio I was out of my house by 330. I had to be there at four to go on at five. So I'm guessing if their show starts at five, they've got to be there earlier because they don't have to just go over everything they're writing and reading but they got all the hair and makeup Well, I gladly gave up. I did do mornings in Syracuse so long time ago. But Okay, back to Christina. So she is in our telling me something good segment because Christina Frank won an Emmy! Her team won an Emmy for best morning newscast in New England. So congratulations to you, Christina. That is just tremendous. Of course, Christina lives with type one. She has a little girl we talked about her baby on the show. She's been on the show. She's just wonderful. So I'm thrilled to just offer my congratulations to what I know is a really, really wonderful accomplishment.

Another Tell me something good comes from health line. Now health line is a fabulous news source. I think diabetes, mine is under the Healthline umbrella, but they're an online magazine, whatever you call it, a news source very carefully vetted health information. And this story just was amazing. So this is a woman from Salt Lake City, Utah, who has type one diabetes, multiple sclerosis asthma and is obese and she just survived. COVID-19 like in the house. hospital ICU saying goodbye to her family and made it through. And more McCarthy, who's a good friend of mine, as you know, did an amazing write up for health line. But this is about Kimberly Ishoy. And Kimberly, as I said, has all of those underlying medical conditions. So how do they think she made it through what happened here? Kimberly says, it was a combination of advocating for herself, but also being willing to do whatever the doctors asked her to do. And she and the doctors agree that her very active lifestyle made the difference. She's a distance cycler and she does triathlons. And yeah, she has all of those conditions that I mentioned, including being obese.

So how does she do all of that? Well, I think it's all of this misconception that if you're heavy, you can't also be healthy or you can't exercise but Kimberly has been doing the JDRF ride to cure diabetes since 2013. And once she knew she could do that, she says she moved on to five K's and triathlons. It says in the article she usually finishes last. But she finishes. And this is a wonderful quote from Kimberly. I personally think we are all created differently like flowers. She says, I will never be a violet or baby's breath. I am a sunflower a substantial woman. But I also know fat women can ride their bikes 100 miles. So that's something. It's a great article, I will link it up. I thought it was incredibly inspiring. It goes through in detail what happens when you're in the ICU with COVID it's a really terrific write up that way. And I'm thrilled of course that Kimberly is doing well and on the road to recovery.

Do you have a Tell me something good story, it can be as simple as a diverse serie something fun with your kids. And this time that we're going through, I think we need all the good news we can get. So let me know and just email me Stacey at Diabetes Connections calm or you can post in the Facebook group but tell me something good.

Usually at this time of year, I am getting ready to go to friends for Life, the big conference that happens every year, mid July down in Orlando, sometimes right after the Fourth of July, this year, it is a virtual conference. And we are prepping for that getting ready. Lots of fun things that are going to be online for you to participate in to watch and enjoy from the comfort of your home. I mean, the good news here is that nobody has to travel to Orlando where it's 500 degrees in July. But of course, we're really missing seeing everybody and I think it's going to be pretty bittersweet to do this conference where you know, two to 3000 people get together every summer, but they've done an incredible job of moving it online. I'm really proud and happy to be a supporter. So you will be hearing more on that.

Please follow along on social media. I am on Facebook and Twitter and Instagram and on Instagram. It's just Stacey Simms. other platforms have to but I on Instagram, I was late to the party and I don't think there's any reason to have to, and I'm not on tik tok, and I'm not on snapfish So, you know, famous last words maybe by the end of this, stay at home will be on every platform you can find Imagine. Thank you to my editor john Buchanan's from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here next week until then, be kind to yourself.

 

Benny  35:15

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

 

 

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