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
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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Stacey Simms 0:00
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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.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
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.
In Tell Me Something Good, we have a few artists in our audience and some good news for the podcast.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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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.
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
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
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.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
The Baby-Sitters Club comes to Netflix! The beloved series features a character who lives with type 1 diabetes. How did the show do portraying life for a 7th grader with T1D? We talk to New York Times Bestselling author and winner of the National Book Award Robin Benway. Robin loved the books as a child and was diagnosed with type 1 as an adult.
Also this week, Mike Suarez turned his son’s story into an adorable picture book called Year One with Type One
In Tell Me Something Good – she had a huge goal for the JDRF rides this year – of course so much had to be cancelled this year but her story took a wonderful turn.. on and off the bike.
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first pre mixed autoinjector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:28
This week, it's all about books and a TV show that's based on books. We're talking about the Baby-Sitters Club with a New York Times bestselling author who loved the series as a child and was diagnosed with type one as an adult.
Robin Benway 0:43
Oh my gosh, I'm now something that I was a fan of for so long. I can now watch on television. You know, I was thinking about Stacey when I did start to watch it. I thought it was nearly perfect.
Stacey Simms 0:54
Robin Benway is the winner of the National Book Award when we talk about Stacey and the babies sitters club, what we liked what we didn't, and about diabetes in media. Plus a dad turns his toddler story into an adorable picture book about type one.
in Tell me something good. She had a huge goal for the JDRF rides this year, of course, so much had to be cancelled and changed. But this woman's story took a wonderful turn on and off the bike. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I'm so glad to have you along. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, gosh, ages ago now he was almost two and in December it will be 14 years. Yeah, he's 15 and a half 15. And more than that, I don't even know anymore. My husband lives with type two diabetes. I do not have diabetes, but I have a background in broadcasting and that is how you get the podcast which we've been doing now. for more than five years,
and I have been wanting to talk about the Baby-Sitters Club for a long time, I mean, we have talked about it because many guests over the years have said that it was very influential to them, either. They read it and really were touched by Stacey's story, the character who lives with type one, or somebody else read it and diagnose them because of it. That happened at least once to one of my guests. It's really incredible to think about these books, and the impact they've had on our community. So when I saw column in Elle magazine recently, about the Netflix adaptation, I really wanted to talk to Robin Benway, the author, I knew she'd be fun to talk to just by her writing voice in the magazine, and she really was and Robin also had some unique insight about the books and about the adaptation, and I was really excited to talk to her. We also talked about diabetes in other media, you know, I think a lot of us cringe when we know there's going to be a depiction of diabetes and a show or they mentioned insulin and we Oh, we know what's coming. So it was fun to talk to Robin about that. And to kind of spotlight some good stuff that's actually out there.
All right, I'm going to talk about my reaction in more depth to Baby-Sitters Club in a little bit of a review, but I'm going to do that later on. Because this is a longer episode. We've got two interviews, we've got Robin. And I also spoke to a dad who wrote a picture book rhyming kids book for about his little boy, and it's called year one with type one, and that is with Mike Suarez. So that's coming up in just a bit but first, diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop was really impressed at how much they get diabetes. It makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required there. Beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to Diabetes, Connections comm and click on the One Drop logo.
My guest this week is a National Book Award winner and a New York Times best selling author. She wrote a column about the Baby-Sitters Club and her reaction to it in Elle magazine. That's what caught my eye. I reached out and said, Would you talk to us but to come on the show? She said sure. And we had a great conversation. Now she grew up with a father who lived with Type One Diabetes, but she herself was not diagnosed until she was an adult. So her perspective on the Baby-Sitters Club, which she loved, as you'll hear as a kid was very different because she wasn't relating to the type one aspect about it right away. I'm also curious to know what you thought of the Baby-Sitters Club. I'm going to be putting more about this in the Facebook group. We've talked about it a little bit, but we'll put more posts in there and get your take. And as I said earlier, I'm going to put a little bit more of my review, although you'll you'll hear much of it in the interview. But a little bit more later on. Here is my talk with Robin Benway.
Robin, thank you so much for jumping on to talk about this. I really appreciate it. It's I'm looking forward to talking with you. Yeah, same here. Thank you so much for having me. All right before we jump into the Baby-Sitters Club, and I have a lot to talk about with that. Let me ask you just the basics. You were diagnosed as a young adult, right you were in your in your mid 20s?
Robin Benway 5:28
Yes, I was 26 it was July of 2003. I was diagnosed I was diagnosed with celiac disease at the same time I was having really low iron problems I was having anemia so they started doing a lot of bloodwork just to find out what was going on and started noticing that I had elevated blood sugar levels. And my father, who was my biological father was also a type one diabetic. So once they saw those blood sugar levels being elevated, they started to put things together pretty quickly. And so I in a, you know, a very strange way felt very lucky that I was diagnosed that way that it didn't progress to the point where I had to be hospitalized or my blood sugar's were, you know, four or five 600 or something like that, that I was diagnosed sort of accidentally and was able to catch it pretty early and could start, you know, meeting with an endocrinologist and started taking insulin pretty soon after that. So there was no mistaking at that age, oh, maybe it's type two, maybe it's something else because of your father, they pretty much went right there. At first, they were like, maybe it's type two. There was a lot of I think, you know, this was 17 years ago. So I think now, the way that people are diagnosing type one and people in their 20s and 30s is very different than it was 17 years ago. I think that was when people were just starting to see that, at least based on my experience and the responses that I was getting from doctors at the time. You know, I had grown up knowing that my dad was diabetic, but in our family, we had always sort of been under the impression that once you hit 12 or 13 years old, you're sort of out of the woods of that, you know, I think a lot of they used to call juvenile demise you know, because they were diagnosis of young. So I think it was a real shock because I had always thought, okay, I'm out of the woods. I'm fine. And that wasn't the case. But they definitely did think it was type two. They started me on oral medications at first Metformin, but nothing worked. And I remember I still remember the first time I took insulin, it was just like, oh, that was the problem. You know, that's what I need because my blood sugar's just came down to right where they should be. So, you know, it was a little disheartening knowing that I was going to have to go on insulin, but at the same time, that relief of knowing that now here's the drug that works was it balanced it out?
Stacey Simms 7:36
Do you remember I've been told this by other adults that I've talked to that what that first dose of insulin feels like, Do you remember that?
Robin Benway 7:44
I do. Remember, I was staying at my mom's house. I was living alone at the time and I thought I don't want to be alone when I take my first dose of insulin just in case. And I remember it dropped. My blood sugar's a little lower. They were like maybe in the mid 60s, and I just remember, I didn't feel shaky but I just remember feeling less. It's that feeling of a sugar rush basically, you know when your blood sugars are high I for me personally, I definitely feel a little agitated, a little edgy, you know a little bit more, I don't know Piper's the word but just a little fuzzier. And I just remember that feeling going away. And I remember also being so terrified of like having to give myself an injection like having to give myself a shot. And I was incredibly amazed at how easy it was and how painless it was. I had always imagined that it would just be a torturous experience, you know, mostly because your experience with injections is like vaccinations or inoculations. You know, it's Earth flu shot. It's a very different experience. Give yourself a shot of insulin. And I remember feeling that relief also of Oh, I can do this. Okay, this is something that I can do. Wow. Yeah. So
Stacey Simms 8:50
the article that I'd mentioned, you start out by talking about this high spot in your career, the National Book Awards Gala and then the reality of being an adult with type one, which is go to the bathroom, I get up your formal gown, you know, giving an injection. And, you know, certainly a great way to start the article. But I'm curious, do you share your diabetes experiences with your friends and family? I mean, not everybody has to be giving themselves injections at the table. Right? I know. I'm sure you're not hiding things. I don't mean to imply that. Oh, as a mom, that was the first thing I thought of was, oh, my goodness in the bathroom. She okay. Yeah.
Robin Benway 9:29
You know, I obviously all of my friends and family know about it. I'm not someone who would ever conceal that part of me. It's not something that I ever feel ashamed of, or feel like I need to keep secret. That's certainly not it at all. I think. For me, it's more about I'm very conscientious of other people's reactions to blood and to syringes or needles, and I just don't want to ever make someone I definitely have known people and I've heard of people who just give themselves an injection right at the table, you know, or will check their blood sugar under the table. And for me, I'm just not comfortable. That just in terms of making other people uncomfortable, but also sometimes things go wrong, you know, like, sometimes, you know, there's a little bit more blood than you thought there would be or you hit a blood vessel when you're injecting yourself with insulin. And, you know, sometimes it's just easier to be in, even if it's a public restroom, you know, it's still a confined space. And sometimes just the privacy is sorted out is something that I prefer but in terms of being open, I definitely I talk about it. I do a lot of school visits with my job, you know, writing for young adults and young people, I do a lot of school visits. And I always talk about how I was diagnosed and how that changed the trajectory of my life. And I always say to kids, who here knows somebody with diabetes, and almost every kid raises their hand you know, whether it's type one or type two, it doesn't really matter to me, I just, I know that they can make a connection with what I'm saying and relate it to either themselves or someone that they love in their lives. No doubt.
Stacey Simms 10:53
Yeah, I think that's to is the difference between my my personal experience of type 1 diabetes is my 15 year old who has made a career out Have trying to gross out his friends. Yeah, no, since the third grade watch this. Yeah, slightly different experience than a grown woman in
Robin Benway 11:09
that dress. You know? It's expensive. You just really don't want to get anything on this.
Stacey Simms 11:15
So let's talk about the Baby-Sitters Club. Now I'm a little bit older so my guilty reading pleasure as a kid was worse sweet Valley High then Babysitter's Club, also say, okay, okay. But were you a fan of this as a kid, this was something that you read and you look forward to.
Robin Benway 11:32
Oh, I cannot even describe to you like how much I love the Baby-Sitters Club. Like, I can just remember going to my local bookstore, you know, the Walden books that was in the mall at the time when there were still Walden books in malls and scanning the shelf and just looking for the new one and either being so excited when there was a new one or so disappointed when, you know, they came out every month and you know, on day 30 I'd be like, Where's the next one you know, and sharing with your friends or your Got the new super special, so then they would loan it to you and super specials were bad. But yes, I mean, just when I think about the Baby-Sitters Club, because I've also talked a lot about, you know, what is sort of my formative reading now as a writer, like, what did I read as a child and a young adult that sort of made me a writer? I think the two things about the Baby-Sitters Club is that they were so funny. And I think I learned how to write humor and really good dialogue from those books. I think you can't really teach how to write humor or write something funny, but I think if you can see it, you can see how either rapid fire dialogue or really smart responses or interrupting each other like, that was formative for me as a writer was seeing how they did that. And then also just as like a 11 1213 year old girl, you know, that is where, and I'm sure a lot of women and girls have had this experience, your friendships just kind of implode. And nobody really knows why. But suddenly, your best friend in sixth grade is your biggest enemy in seventh grade. And the factions are changing all the time and who's friends with who and who's not friends with who and who Did what to whom it's traumatic, it's a really difficult experience. It's a big part of growing up, but it's still difficult. And the thing with the Baby-Sitters Club was that at the end of the book, they were always friends. So you could see the sort of regeneration of friendship again and again and again. And for me, it was very comforting. You know, when sort of my female friendships were in turmoil, it was so lovely to see these girls work through things and stay friends in the end. So those were, I think the two things that kept me coming back to the book, but a great way to look at it.
Stacey Simms 13:29
Yeah, but you as a reader, your type one experience was with your dad. So I imagined Stacey McGill, the character in the book who has type one wasn't somebody who could really relate to that wasn't what you were reading the books at the
Robin Benway 13:42
time? Absolutely not. Absolutely not. You know, I actually I shied away from Stacey as a reader. You know, I loved I moved to New York when I was 18 years old. I've always wanted to live in New York. So reading her as a 12 year old I was like, Oh, that's she's a sophisticated city girl. You know, that's how they always portrayed her. She's From New York City, but that was my favorite part of her but there were books where either she was just diagnosed or I think there's a book later in the series where she was hospitalized. And I had a hard time reading those just because at the time my dad's health he had been a diabetic for 30 years at that point, so his health had gone up and down, you know, just the nature of the disease and the nature of treatment at the time as well. It wasn't as advanced as what we have now. So you know, it was scary to see my dad go through that and I, Baby-Sitters Club was my safe place. You know, that was my fun, safe, circular path of Stony Brook Connecticut. I didn't want a hospital or an insulin shot coming into it. So I don't say I didn't like Stacey as a character. I love Stacey as a character but in terms of what she went through, I just I really shied away from that. That wasn't I was much more a Claudia dawn girl. So yeah.
Stacey Simms 14:54
How did you approach the Netflix series you've lived with type one now for a while. We all know that they never get it right in In media, I really looked looked at the show. I look very much forward with a lot of trepidation. I was almost afraid to watch it. What was your reaction?
Robin Benway 15:09
I mean, I literally had an alert set on Netflix to remind me that the Baby-Sitters Club will be on Friday, July 3, and then I got the notification. I was so excited for it just because I had loved the books. And you know, I don't know any of the creators personally, but I was familiar with their work and their backgrounds. And I had read a lot of articles by that point about how they had approached the material and I just had a really good feeling about it. You know, I just thought that this is possibly in really good hands. And honestly, I wasn't even thinking about it in terms of Stacey and diabetes. I was thinking about it as oh my gosh, I'm now something that I was a fan of for so long. I can now watch on television. You know, I was even thinking about Stacey, so when I did start to watch it. I mean, I thought it was nearly perfect. I thought that they kept the spirit. I love that they kept the girls young, you do feel like you're watching 12 and 13 year old girls, b 12 and 13 year old girls, you know, and all of the struggles that go into that, but all of their I don't say immaturity, but just that feeling of they're still young, they're still figuring things out. They're not 17 years old in high school, you know, they're still little girls and I thought that was really important what the books were and to the show, and I just thought the way they modernized the material was perfect. You know, they talk about Claudius grandmother being in bands and our you know, Claudia is Japanese American and talk about her grandmother being advanced in our when she was young. And you know, at one point Marianne is babysitting for a kid who's transgender and that would have never been in the past 30 years ago, and I just thought they did a beautiful job of modernizing not only the characters, but the storylines while still staying true to what the spirit of the books was. They did
Stacey Simms 16:45
a nice job with that too. And they did this many times where they would put something in like that, you know, the child who was transgender, but the storyline wasn't so much about that child. It was the babysitter character's reaction to it and reflection of it. But I thought was going to throw this word up. I really thought it was masterfully done. Yes, she learned more about her. And yes, there was a there was a lesson there. And, you know, I know there's a lot of criticism from people who get uncomfortable with those kinds of issues, but I thought it was so well done. And they did it many, many times over. And my 18 year old who's really conscious of those things right now, I was really impressed. I thought it was really well done. But I was very worried about the truth about Stacey, I was like, Oh, no, because we see this happen so many times in media, and I think they got a couple of things that adults would notice kind of wrong. Boy, did they hit it out of the park, in terms of what younger people would see.
Robin Benway 17:41
What did you see in Stacey, what I see in myself. Here's a girl who has many, many things. But one of those things is diabetic. It is not the arc of her life is not the big picture of who she is. It's one thing and there's a scene where she goes to babysit and her blood sugar feels a little bit low and she pulls out a juice box and I realized that I had never seen that in media before. You know, I hadn't seen this girl or any girl or any woman just do that she feels better she keeps going. I mean, I have had literally hundreds of juice boxes on the road working, traveling, you know, so many so many juice boxes go down in bathroom stalls and downstairs bathrooms and you know, just you do what you have to do that's important. And then your blood sugar's come back up and you move on. And I was shocked to how blown away I was by that because it's such a simple act, but it is such a big part of managing your blood sugar and managing diabetes.
Stacey Simms 18:35
Yeah. Didn't you expect her not to do that and faint or have to go home from a babysitting job? That's that's what I think we all expected her to do. It was such a nice normal. No, I'm fine.
Robin Benway 18:45
Yeah. And I also I did like there is a scene I think at the end where it's sort of like a neighborhood meeting with all the parents of the kids that they watch and though the girls are explaining what it what this means for Stacey and how this works, and I liked that they introduced the doubt of the parents. Because I think that's, it's the pushback that you get like, are you okay? Can you handle this? You know, there's this feeling of, are you just gonna collapse at any moment? Are you safe and I like that they were like, this is how we this is how Stacey manages that this is how she handles it like these are factors in her daily life, but she's also smart enough and mature enough and knowledgeable enough to take care of herself. And I thought that that was a really good message as well to see that some people may not understand it. And here we are explaining to you what this is. Really, if we had had that exact discussion, not as a group of parents, because we aren't lucky enough to have a Baby-Sitters Club in my neighborhood.
Stacey Simms 19:37
One of our babysitter's when my children were younger, has type one. And when Lauren would come over we the first couple times we talked about, well, what would happen if you had a low blood sugar and what would happen if this happens, and we talked about all of that, and it was funny, I saw a few adults in the community commenting on the show, and they that would never happen. parents wouldn't talk about it that way. And then they also and I said yes, well, I'm sorry, but we did. Mother's overreaction, right? No mother would overreact like that. I was like, Hello, I mice my son's very first low blood sugar when it was a bad enough low sugar that we had to treat with more than just a juice box. We were about three weeks in, I called my endocrinologist convinced he was gonna send us to the ER, Mm hmm. Right? Okay, we treated it. His blood sugar's coming up. What do we do now? They were like, What do you mean? But I thought we were gonna go in for tests or something. So that kind of confusion really made me laugh, because in the show, she actually did wind up going to the hospital for the day. But in our experience, I mean, I did call I can't say that I didn't. So it was pretty funny to see our real life reflected in that way. I did also like the mom turn around by the end, but it was more as we mentioned earlier, it was more about Stacey and less about the other character. She turned it around.
Robin Benway 20:52
Well, going back to the mom, you know, I was diagnosed at 26 I know how much my mom still worries about me to this day like she would never Say that you're stupid ever say it explicitly. And I'm sure the way you worry about your children and your son, you know, there's just always going to be the worry. I think that's also very much based on who Stacey's mom and her parents were in the books as well. They were very anxious about her disease. And I think that was really important to see that, you know, Stacey is managing many different facets of this disease, including what is other people's reaction to it, including, what is her? What are her parents reactions to her? And it and I like that they were able to have that conversation and the confusion between this is who I am versus this is how you're making me feel. I mean, I think those are things that every young person feels even if they're not dealing with a chronic disease or not diabetic, how are you reacting to me versus how I want you to react to me, so I thought they did a really good job with that, but it's just tricky because every person you meet is going to react completely differently to your diagnosis and regardless of how you react to it. And so that's another thing that you're always navigating is, I mean, I'm sure your son has heard this. I'm sure every diabetic has heard this, but we Hear the Oh yeah, my uncle had it. He lost a leg or he now he's blind. You know, everybody write tragic stories and you have to sort of put up a barrier and remind yourself okay, well, that's not me that is your uncle or your dad or whoever. So I think that was for me as I bet seeing Stacey navigate the reactions of other people I thought was really important as well because that is a big part of it.
Stacey Simms 22:22
Robin Well, I have you and as you listen, Robin is a National Book Award winner New York Times bestselling author, six novels for young adults. I want to ask you, Robin, why is it so hard to write genuinely for young people?
Robin Benway 22:38
I think for me, you know, six books in now at this point is empathy. It's the very first thing that it has to be the biggest part of every book is empathy. I think it's very easy to like see young people today and be like you kids with your tic tac toe and your snip snap, you know, like they don't, you know, people it's very, very easy to look at what is this? What are we in now, generally See, I guess and look at them and think, well, in my day, we had this and not that we weren't on our phones all day. I mean, I'm on my phone all day. I'm a 43 year old woman. So I don't you know, I'm not gonna judge a 15 year old for being on their phone all day. But I think for me, the biggest thing is empathy, because nothing really changes, right? Like we're all still figuring out how to get along with our friends. Who do we want to be? How do we get along with our parents? How do we move through the world? You know, I as you get older, you hope you get wiser you hope you have more experience that makes you grow mentally, you hope that you maybe have a little bit more agency and a little bit more ability to vocalize how you feel and how to stand up for yourself but the struggles are still the same. You know, the way you get along with your teachers the kind of the same way we all get along with a boss or sometimes in a classroom, you have to be with people you don't really want to be with same as in an office space. You know, sometimes you have co workers. So I think the feelings are always the same. The technology doesn't matter. The place doesn't really matter for me. It's just The feelings whether it's love or family or friendships,
Stacey Simms 24:03
have you ever considered putting type one into one of your books? Yes,
Robin Benway 24:08
I have. I've definitely over the years, I've had conversations with different editors or people in publishing. And they've said, like, hey, you're diabetic, would you ever think about writing a book about diabetes? I think the thing is for me, and this is something that I've really, really, it's why I don't speak publicly about being a diabetic so much is that I don't want it to become the only thing that people think of when they think of me again, I'm not ashamed of it, I'm very open with it. But at the same time, you don't want to just become Oh, that's Robin, she's the diabetic, you know, we we are all more than just one thing. And so I know that if I do a book about being a diabetic or a character who has diabetes, I will have to talk about that book for years, you know, hopefully, you know, one to two years. You know, it will become the defining part of every interview that I do every, you know, work conversation that I have, and Worry sometimes that it will dilute down to just me being the diabetic when I like I said I am so many other things as are pretty much every other diabetic out there we are more than just that disease. And so I do think about it. Also for me fiction is such a wonderful escape. I don't write books because I have to I write because I love writing books, especially for young people. And I think that for me, I love that escapism of it. I love that I am not having to figure out a character's blood sugar situation. I'm already I've got enough doing that for myself. So I don't know I think about it. Maybe as the years go by, maybe in a few years, I'll engage it. There would have to be a really good idea. It wouldn't just be Oh, this character has been diagnosed with diabetes, there would have to be more at play for me so. So I think about it, never say never, but if someone else wants to do it, go for it.
Stacey Simms 25:52
You know, it's funny, I don't want to put too fine a point on it. But the first part of your answer there, which is you didn't want to be defined by Diabetes Connections. What Stacey's story is all about to Yes. And I think that's why we like it so much, because that's how almost everybody I know with any kind of diabetes feels. Yeah, right. Agreed. I think anybody with anything
Robin Benway 26:11
like that, you know, it's very easy, especially in sort of these wild modern times to focus on maybe what is unknown or scary or, you know, baby, if people don't understand it, that's what they kind of go to first. But that's just not how I view and that's not how I view being diabetic. It's just so it's just a thread that's woven into my life, you know, I, it will always be there. It's something I will always manage. But it's so inherent to me. I don't want someone just to pull that thread out and only look at that rather than the bigger picture.
Stacey Simms 26:41
Is there any depiction of type one in media that just makes you mad? Like, can you think of something where you're like, Oh, I hate that one. When people refer to that one,
Robin Benway 26:48
I can definitely think of one thing but I can't say
Robin Benway 26:52
but I it was fairly recent and yeah, it just I for me, it was sort of like that thing where you're just like, Are you serious? Like, is this really like, this is what you had to do, and this is what you did with it. And it just it was petty on my part. And, you know, mean, and I can't say it, but I got so frustrated and so annoyed. And, you know, I think that was a long simmering feeling that once I got to the depiction of Stacey, I think those two feelings just sort of combined and became an article which was I can't believe I just had to read this versus Oh, I can't believe I just saw this, you know, and that the negative and the positive of that sort of combined together, but yes,
Stacey Simms 27:32
definitely. And then Baby-Sitters Club has got to have a season two, you know, is there anything that you remember reading that you really liked them to see? And it doesn't have to be about Stacey, oh gosh,
Robin Benway 27:42
I really want to see Don's mom and Mary's dad get together. I know they were together in the first season but I if memory serves, they get married. So I really want to see that wedding. Just because I love Dawn's mom both in the book and on the show and I love the way that they've treated Maryam dad is fun. This is kind of sad, but in the opening scene. Louis, the Collie, you know, appears with Christie. It's Christie's dog Louie Who's that Collie dog. And I was like, Oh, no, Louis because I don't. If memory serves things get a little dicey. Oh, no.
Stacey Simms 28:11
Robin Benway 28:13
alert. I really, I when I saw Louis, I was like, Louis, you know,
Stacey Simms 28:19
it is amazingly six with us from what we read in our childhood, right.
Robin Benway 28:24
Well, I was talking with a friend of mine about this. You don't realize how much you buried in your brain. You know, I'm watching the show. And I'm like, oh my god. It's Louis. Oh my gosh, it's more been a destiny. I forgot about a bit of destiny. And just Charlotte Johansen, Jamie Newton and his sister Lucy and I'm like, how do I remember all of this? And yet I'm like, did I pay that bill? See now I'm
Stacey Simms 28:45
jealous. I want it I like sweet Valley High. backer revel in those memories.
Robin Benway 28:52
I'm sure it's developing somewhere.
Stacey Simms 28:54
I kind of hope not really cheesy. Can I ask you are you working on anything new right now I know authors always hate that. I know just finished and Oh, that was great. But what's that?
Robin Benway 29:07
I always say it takes a brave person to ask a writer somebody working on because oh tread carefully. I am working on something. Yes, it has been a slow road. But the book has evolved many, many times. And I've sort of distilled down to what the book actually is. And I have started writing it. I feel really good about it. I started it a couple times, didn't feel good, went back to the drawing board ripped it all up again and started over. So I do feel good about it. Now it has taken me a long time to figure out what it's about. And I think at the same time, I was coming down off the success so far from the tree and the time that that took, which was wonderful, no complaints, but it was hard for me to both work on a new book and enjoy the success apart from the tree. So I am basically staying with family for a few months. I'm sort of quarantined away here and just everyday I sit down and write 1000 words and it's going well, it feels very, very good to be writing. Again, I haven't written for a while and I have missed it very much. That's fantastic. Well, I look forward to reading that. I'm so glad that I read the article. That was an L. Thank you so much for joining me to talk about this. It was a lot of fun. And I continue to learn more about the Baby-Sitters Club baby. Those books. Thanks so much for joining me. Thank you call me if you have any questions about the baby sitters.
Stacey Simms 30:17
You got it Robin.
Robin Benway 30:23
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 30:29
More information on Robin and her books on the episode homepage. I'm really appreciative that she jumped on with me and I definitely got to seek out her books now. It was funny to think about not just the Baby-Sitters Club books, which as I said, I was marginally familiar with as a kid I was a little too old. But the sweet Valley High books man, she made me want to see if my mother still has them. I bet she does. I guarantee you they do not hold up for where they are relic of their time. Right The 80s if you're familiar with sweet Valley High I know you know what I'm talking about. If you are not I will not suggest Due to any more of an explanation, all right, in just a moment, I will be talking to a different kind of book altogether a different kind of author, a dad who wrote a book about his son's diagnosis to help other kids and families.
But first Hey welcome to our newest sponsor Diabetes Connections is brought to you by Gvoke HypoPen you know, almost everybody who takes insulin has experienced a low blood sugar and that can be scary. have very low blood sugar is really scary. And that's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle and that means it is easy to use. How easy is it, you pull off the red cap, you push the yellow end under bare skin and you hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Jeeva glucagon comm slash risk
If you have a child diagnosed very young with Type One Diabetes, chances are you have a favorite book about diabetes that you read together. We were so lucky to have a couple of these Rufus comes home was one from JDRF. There was another one that I've mentioned before called Jackie's got game that we absolutely adored. There are a lot of wonderful books now for kids with type one. And this week, I am talking to one of the authors of these books. And that is Mike's for as he wrote year one with type one, four and featuring his son, Andrew, it's all about their diagnosis story and also a bit of a teaching tool. Here's my conversation with Mike.
Mike, thanks so much for joining me. It's great to talk to you.
Mike Suarez 32:43
Hi, Stacey. Thanks for having me on.
Stacey Simms 32:45
One of the things I loved doing when my son was diagnosed was finding books that we could read together. And you know, My son was tiny, he wasn't yet too. And so when you have a picture book like this, it's really a nice opportunity to go through it with the kids. So I just want to let you know that They really appreciate what you've done here. I think it's great.
Mike Suarez 33:02
Yeah, thanks for saying that. You know, it's kind of the same experience I had, you know, I went to Amazon when he first got diagnosed, and I was looking for books myself, and I found some pretty good ones out there. But I was, you know, really looking for one that really kind of resonated and something that I could share with my own family members and friends to really kind of drive home what it is that he goes through and what it's all about.
Stacey Simms 33:23
Well, it's been a couple of years now since Andrew was diagnosed, but why don't you take us through? Even though you're talking about it in the book, why don't you take us through his diagnosis story? Had you all had any experience with type one Had you ever given an injection before and this,
Mike Suarez 33:36
so I was unfamiliar entirely with Type One Diabetes. My wife was more aware of it because she had friends growing up and in college that had type one diabetes, and she was around people that have given themselves insulin injections. And for me, I was just totally unaware of this condition. I was totally aware of of the treatment for it. The only thing I knew of diabetes was unfortunately, just That joke that people like to tell around how if you eat too much candy, you get diabetes. And that's basically all I knew of diabetes, which obviously isn't true or isn't fair and especially isn't isn't true of type one diabetes. So I learned a ton, just in that that first few days in the hospital,
Stacey Simms 34:15
when did it occur to you that with everything else that's going on, it would be a good idea to write a book.
Mike Suarez 34:21
So it was probably a couple months shy of his first year with it. I don't know how the idea popped into my head. I was taking the train in and out of Boston every day for work. And I think just a few lines kind of popped into my head. So I took out my iPhone and just wrote him in my notes app. And I think part of it too, was that my wife and I were talking about bringing a book into school, to read to his classmates, know what it is that he has and goes through and know why it is that he has to leave and see the nurse and why it is he gets, you know, Skittles every once in a while and he's in class. And, you know, going through the books out there, you know, again, there were good ones, but I was just looking for the right one that told the story I wanted to tell his classmates in the way that I wanted to, you know, I've seen that a lot of the other books out there are actually self published. So I knew that the opportunity to do this was out there, you just had to kind of sit down and figure it out. So I utilize my train time in and out of Boston to kind of write and refine my lines and kind of do a little bit of research to figure out what the process was all about
Stacey Simms 35:26
was the idea for you to write it for kids to read or for parents to read. I mean, it's the kind of book right, it's in rhyme. But there's some concepts in there that are going to be above a four year olds head.
Mike Suarez 35:38
Right. I think what I wanted, most of all, well, I guess there were a few goals. There were a few readers I had in mind. One was the newly diagnosed I wanted for newly diagnosed children to be able to read this and be able to relate to Andrews story and be comforted to know that you're not alone in this that there's other people that have been through Through this and have dealt with it. So that was maybe my primary audience secondary to that would be kind of the friends and family of somebody who is newly diagnosed, including my own friends and family so that they can get an appreciation for what it is and kind of understand what it is that their, you know, diabetic friend or family member goes through. But I guess, you know, I was just thinking about when I read to my own kids, you know, a lot of time it's me reading to them, not them. I guess as they get older, it's more of them reading to themselves, but it's mostly me reading to them. So I can, you know, kind of pronounce the big words, but also the books that we tend to enjoy the most, or that I enjoy reading the most and they seem to be the most receptive to are the ones that rhyme. So I did want to have that kind of make it accessible for kids not make it kind of a chore to read. And that's something that I none of the other books that I saw did was was kind of right in verse so I wanted to have that aspect of it to be accessible. Similarly with the pictures and the drums I wanted them to be kind of, you know, light hearted in a way as much as it's a serious subject matter, but to make it accessible for kids to understand,
Stacey Simms 37:08
the book tells the story of you know, your family's journey, and then educating people about the basics of type 1 diabetes. But at the very end, your son has signed it and say, thank you. How did that piece come about?
Mike Suarez 37:23
One thing I haven't mentioned yet is I actually did this whole thing in secret, because I did it on my train rides, and nobody was watching me and then at night, I would, you know, once everybody wants it bad, I'd maybe work on it a little bit more. And this includes the whole process, finding the illustrations, kind of framing it for them, getting beta readers to help sharpen up the the rhyme and all that sort of thing. And I wanted this kind of personal touch because I wanted people to read it and realize that this wasn't a fictional character that this is a real boy. There was maybe the same day that I asked Andrew to write up a birthday card for a birthday party he was going to I just took out another piece of paper and just asked them to write on it. Thank you for reading love Andrew. And he asked me What's this for? And I just was like, I don't worry about it. Like I didn't really, I just asked him to do it. Then I put it all together. And then I when it was finally done, I got to read it to my family for the first time, you know, naturally they all loved it. But I think it was I read it first to my wife and son while my daughter was napping, because I didn't, I kind of wanted to, you know, have their full attention. But after she woke up, Andrew took the book, and he showed it to her. And he flipped immediately to that page that had his writing on it, and was like, so proud of having that contribution to the book. That was the first thing he showed his little sister. That's great.
Stacey Simms 38:41
There's a page of the book that, you know, has him coming home and has gifts and things with a lot of beams on tags. Are those friends and family names.
Mike Suarez 38:51
Yep, they were basically you know, the people that probably were the first to find out and you know, felt, you know, really bad and came to us with, with just some gifts for Andrew, including our next door neighbors and their kids, my sister and her husband and their kids, basically, you know, aunts, uncles, siblings, it just so happened that some of the names rhymed. So if you read them in order, even though the name tags kind of, you know, rhyme together, when I recognized that I was like, you know, I should put them all in there and kind of, you know, thank, you know, some of the people that were, you know, part of this journey and a part of kind of coping with all of this.
Stacey Simms 39:31
Yeah, I think it's really well done. The one thing I would say is, there's this little bit about no sneaking snacks. We count carbs to know what goes into my body, but no sneaking snacks. That's beyond being naughty. Yeah, I'm no psychologist, but I always felt like sneaking and and associating any bad behavior with diabetes was something that maybe it was something that we never did. Let's just write that way in my house. We always said you can't get in trouble for anything to do with diabetes, it just flies off the books. So that's the only thing that kind of made my eyebrows go up a little bit. But Gosh, Mike, I'm not really not a critic here. Sure, you know, and I think that's also a good illustration, no pun intended that we all parent in different ways. Yeah. Right. I mean, there's no one size fits all you got to put insulin in, you got to know where your blood sugar is. Yeah. But you know, the way you parent is probably not exactly the way I parent and that's fine. Right. So that I was just curious. And you know, you showed it to your endo. I think that's, again, with my book, I did the same thing, right. You know, you're not a medical professional, but you're showing it to the medical professionals and hoping that they will flag anything that comes up. I'm also curious to know, your daughter makes a couple of appearances in the book, and she's one of those names that we mentioned. Who is she doing and how do you balance the son who gets all this attention for type one and trust me, I have the same situation in my family, right. I have an older daughter who doesn't have type one. How do you handle that with her? How is she doing?
Mike Suarez 41:00
Yeah, I mean, she's just as used to it by now as as Andrew, you know, Andrew was four and a half, she was one and a half. So she has no memory, you know, whereas Andrew may may recall, he's he's a, he's got a pretty good memory for a kid his age, he may recall a time before all of this, she would have absolutely no memory. So this is all she's ever kind of grown up to now. So whereas if they were teenagers, then maybe if she was used to just, you know, snacking whenever she wanted, she would continue to do that, despite Andrews diagnosis, but because we're able to kind of be careful around that about that stuff from the outset. If it's not time for Andrew to eat, then we're not going to let her eat in front of him. But if we're you know, giving Andrew you know, something to bring his blood sugar up, if it's maybe a pack of Smarties or something like that, and we only need to give them eight of the 10 then maybe we'll give her the other two, but it is interesting to see how she internalizes as she gets older, how she responds to it, somewhat funny side note around it She sees Andrew take shots all the time and she doesn't get them herself. And sometimes she sees Andrew get shots and she like, asks or she at least at least did this. earlier on, she would say, where's Maggie shot? Where's Maggie shot? And we would explain No, Maggie doesn't need a shot. So I think it was last year when we took her to get a flu shot. She was all about getting her flu shot right. After she got it, she asked for another one. And she was like crying because not because she got the shot, but because she only got one, which was kind of backwards from what you'd expect a kid raised to do. And then another kind of similar story is there was one day where she closed like a dresser draw on her finger and her fingernail started bleeding and you would expect a kid her age to just start wailing. She actually picked up her finger and she was like check my blood sugar. Check my blood sugar.
Mike Suarez 42:51
You also wrote a Christmas story. Yep. Why did that come about? Tell me that story?
Mike Suarez 42:59
Yeah, sure. So When you're one with type one first came out, yeah, I created a Facebook page to kind of go along with it to give updates about Andrew and to kind of, you know, create some fun memes and things like that to kind of draw attention to it. And I created a kind of a spin on Twas the Night Before Christmas. And every once in a while, like a new couple lines would occur to me even after Christmas, and I would kind of go back and edit the post. And then at some point, I was like, you know, there's probably enough here and there's probably enough opportunity for reuse from my first book that, you know, I wouldn't even be that many more new illustrations. I could just turn this into another book, relatively inexpensively and you know, certainly justify the cost that goes into it. And so I said, Yeah, why not? So I just kind of thought through it and just kind of threw it together and I was really happy with the way it came out.
Stacey Simms 43:50
So Mike, we celebrate Hanukkah. I'm not sure how well versed I am in this classic poem, right? But it seems to me that all of the reindeer have Dexcom on I'm not sure I remember that from the original Am I looking at this right? Do they all have Dexcom
Mike Suarez 44:07
everybody everybody basically everybody in the story that the Dexcom the reindeer have all all of Dexcom on the Elf on the Shelf has one Santa has one basically everybody in the book and that's what I wanted to create was kind of a world where you know what, it's okay that everybody in the story has it.
Stacey Simms 44:25
All right, so what's next? Well, there'll be another issue of this are you gonna move on to the elementary school ages Andrew, you know, with seven now so it's a little different than when he was little?
Mike Suarez 44:35
Yeah, it's a good question. I'd certainly like to do you know, to continue Andrews story. I haven't really started anything yet. But I've got a few ideas floating around. I mean, I think one of the things I realized is that there's actually more children's books that are picture books than there are kind of chapter books. That's obviously a whole different ballgame. Then picture books, but my mother in law's actually she's an author. As well, and she's written lots of novels. So if I do decide to go down that road, it'll probably be a lot more work than I did for these other ones. But I certainly would have, you know, a mentor throughout the process. If I did go down that route.
Stacey Simms 45:13
It'd be great to have more books with a protagonist who lives with type one. And it's not about type one, if I could put a request in. Yeah, no, it would be really nice. There's a few books and I'll, as you listen, I'll link some of them up in the show notes. But there are a few books Besides, you know, the Baby-Sitters Club that feature Stacey who lives with type one, but it's a little outdated at this point. And the lily books, there are some I hesitate to call them novels. They're like novelizations for middle schoolers and stuff like that. It'd be great. There's only a couple of books I can think of that have a protagonist who lives with type one, but the book is really not about the diabetes.
Mike Suarez 45:47
Right. So yeah,
Stacey Simms 45:48
that's, I'll put my vote in for that.
Mike Suarez 45:50
Yeah, certainly. I think that's a great idea.
Stacey Simms 45:53
Well, Mike, I really appreciate you coming on. These books are so fun. I have a lot of great memories of reading the book that we liked. When he was little Jackie's got game was our favorite. I don't even know if they're still printing that one. But that was the one we loved. So I hope that people find this and love it, you know, kind of just like we did that stories. Thanks for coming on and sharing your story. Sure,
Mike Suarez 46:13
yeah. Thanks so much for having me.
Stacey Simms 46:14
You can find out more about Mike's book, just go to Diabetes connections.com and click on the episode homepage. This is in the show notes. Every episode has show notes on whatever app you're listening to. If you listen to podcast apps, they will display a little bit differently. I think Spotify is finally letting people click through. In other words, if there's a link in the show notes, you can get there through Spotify, but you can always go to the homepage at Diabetes connections.com. if things aren't showing up in your player and find out more there, tell me something good is up next. And boy, there have been so many changes this year with COVID and the JDRF bike rides not an exception, but there's some really good news about one particular writer and I'm going to share that
but first diabetes Connections is brought to you by Dexcom. Do you know about Dexcom Clarity. It is their diabetes management software. For a long time, I just thought it was something our endo used, but you can use it on both the desktop or as an app on your phone. And it's an easy way to keep track of the big picture. I check it about once a week. It really helps me in many dial back and sees longer term trends and helps us not to overreact to what happened for just one day or even just one hour. The overlay reports help add context to Benny's glucose levels and patterns. And you can share the reports with your care team. We've done that all this year with the virtual appointments makes it so much easier and productive. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at Diabetes connections.com and click on the Dexcom logo
a couple of years ago I met a local woman here in the Charlotte North Carolina area who lives with type 1 diabetes. Dana Cumberworth first impression that she made me was that this might be one of the fittest people I would ever meet and come to find out she is really Just an athlete, just one of these people who is always always moving and pushing and thriving with type one she bikes she runs she weight trains. Dana was diagnosed as a student. She was a first year student at Wake Forest and their physician's assistant program. And how she was diagnosed is pretty incredible because they were doing the endocrinology part of the class. And when her lab partner tested Dana's blood sugar, it came back at 700. So she was diagnosed in the class while she was diagnosed at the doctor's office the next morning. Fast forward. She has since done I believe, three Iron Man races and then she started getting involved with jdrf. And the bike rides this year was two been a very big deal for Dana because this is her 10 year diaversary. It was just last week actually that she marks 10 years with type one, and she was going to do several if not all of the rides this year. Oh my goodness.
But of course plans changed. Everything went virtual. So she and her husband and friends planned ahead To the beach to the east coast here of Charlotte, North Carolina, and do their own version of the ride there. This was supposed to happen this past week. But if you've been following the weather and the hurricane trackers, then you probably know that hurricane eecs was a big problem here in North Carolina. So instead of being able to complete this at the beach, in fact, with the way the podcasting time shifts here, she will have completed 100 miles in Charlotte with some friends and family. So that is absolutely amazing. She set a new goal she keeps surpassing her monetary goals. So her new goal set just a couple of days before that ride is $20,200 because as she said in one of the videos she makes 2020 has already been unbelievable. So why not push that goal? That way? She's not that far off. So 2020 $20,200 and oh, I have forgotten to mention that Dana and her husband announced a couple of weeks ago that she is pregnant, I believe at this point. She's about 1819 weeks along. Hi, I'm going to put some of her videos in the Facebook group because she's been talking about her journey this whole year. And I just think her story is amazing. I will link up some of the videos that she's been doing into the Facebook group at Diabetes Connections, the group, but yeah, hundred miles, type 1 diabetes pregnant. And when you look at her smile, it just looks like it's a piece of cake. She's so inspirational to me, especially to push on with everything that's happened this year and how this ride keeps getting changed and changed and changed. So congratulations, Dana. Continued Good luck and good health to you and your family. And we will cheer you on.
If you have something good going on. It doesn't have to be 100 miles of biking while you're pregnant. It can be you know, a diaversary milestone that makes you and your family happy or something that you really want to shout to the hills. Let me know you can email me Stacey at Diabetes Connections comm or post in the Facebook group Just tell me something good
At the top of the show, I said I was going to talk a little bit more about the Baby-Sitters Club, the TV show on Netflix. And I think that Robin and I covered it pretty well. But I just wanted to say a couple of more quick things about the actual depiction that I realized we didn't touch on in the interview. If you haven't seen it, or you've had I'm curious what you think the feedback I heard from my friends who have kids with type one who watched it was that I don't know anybody who didn't like it universally, very well received by their kids. They loved seeing a beautiful young woman who was accepting of her condition who told her mom, you know, I'm going to do it this way. Who asked for a fancy purse, she didn't get the fancy purse. But you know, she did this for that Gucci bag. And you know, other things like that, which made it seem very normal. You know, she was low during babysitting, she drank the juice box and went on her way. It didn't seem insurmountable and her friends, the kids, I don't think Robin and I talked about this. The other babysitters in the club, when they found out said Why does somebody with diabetes or you can still do such And so with that, right? Okay, no problem and they really just moved along. Like most kids do, it's the adults that have more of a problem,
the things I didn't like about it, they still got stuff wrong, which amazed me because I know that they had to be consulted with people who have type one for this, or at least I hope they did. But what they got wrong was the seizure. Did you see that she had a seizure before she was diagnosed, and they talked about it like she went into insulin shock. Now, I am not a medical expert. Perhaps that could happen. But it makes no sense to me that somebody who is not yet diagnosed with type one, so they are not taking any insulin could go into an insulin shock that would make them have a seizure. Right. It just seemed kind of a stretch. They wanted to do something that would make Stacey embarrassed to push the reason why they moved. It was just this whole I don't know to me that was a big turn off, but it was quick, and I get it it move the plot along.
The other thing was this weirdness where that one low blood sugar, which Stacey treated herself causes her mother to take her in for a day of tests. Now, having been a very Worried Mother, I'm still one, let's face it. But when I called my endocrinologist every single day of the first month that Ben he had type one, which I really did do, they never told me bring him in for tests because he had a low blood sugar. Right? I could see a parent calling. I could see a parent being alarmed. I couldn't see an endocrinologist going along with that. And given Stacey was talking about how she was in the hospital for a whole day taking tests. So that was also a little weird. Is it nitpicky? Yeah. But if you're going to tackle something like type one, it's really not that hard to get it right. So I hope they continue to follow Stacey and show her confidence and show we're doing lots of other things that have nothing to do with diabetes. There's definitely gonna be a season two of this show. It's a huge hit. That means there's a lot of room to get it right. So I stay optimistic. What did you think I'm really curious to hear what other people have to say about this as more people discover the series
before I let you go, I have something to ask of you and it is about podcast reviews. If you are still listening, I know you were a big fan. I would really appreciate it. If you haven't moment to go to whatever podcast player you're listening on and leave a review. Maybe you're listening on the website or through social media, but especially if you're on Apple podcasts, I'd really appreciate a review there. If you're not, you can head over to Apple podcasts easily find Diabetes Connections and hit subscribe. It's free to subscribe. no cost. It is free on any podcast player and we are everywhere you can get audio Spotify, Pandora, Apple, Google Android, if you're not sure, go to the website, Diabetes connections.com. Scroll down, and you will see 15 links of places to subscribe to the podcast. And you just you can pick one, chances are good, the app is already on your phone and subscribe for free and leave review. I'd really appreciate it. All right, thank you to my editor john Kenneth audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Transcribed by https://otter.ai
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.
In Tell Me Something Good.. graduations.. zip lining and sky diving!
Get the App and listen to Diabetes Connections wherever you go!
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.
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.
Yeah, really happy to be here. All right,
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.
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?
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
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.
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?
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.
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,
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
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.
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?
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?
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.
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?
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?
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.
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?
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
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.
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.
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