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Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Diabetes Connections with Stacey Simms Type 1 Diabetes
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Now displaying: Category: living with T1D
Apr 9, 2020

D-Podcasters Unite! Stacey teams up with Alan Nolte, co-host of Dads and Diabetes podcast, Amber Clour, host of Real Life Diabetes, part of Diabetes Daily Grind and Matt Vande Vegte, co-host of Pardon My Pancreas and co-founder of FTFWarrior.

They talk diabetes, podcasting tips and tricks and even previous experience with pandemics!

More on Amber's Spanish Flu story

CDC Pandemic Resources

CDC info on Spanish Flu

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

In TMSG – some wonderful healthcare heroes in a diabetes community.. and a big religious milestone while we’re all socially distancing.

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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

Click here for iPhone      Click here for Android

Mar 25, 2020

We asked and you answered! Listeners sent in their audio to let us know what's going on in the diabetes community right now.  It's a tough and stressful time, but you're not alone. Listen to stories and thoughts from people from the US, Saudi Arabia(!) and of all different ages. Truly a time for Diabetes Connections.

Want to send in your audio? Here's how - blog post 

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

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!

Click here for iPhone      Click here for Android

Episode Transcript:

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes five people who have diabetes by Real Good Foods, real food you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Unknown Speaker  0:20

This is diabetes connections with Stacey Sims.

 

Stacey Simms  0:26

How is everybody doing? I'm not exactly sure how to even start these episodes anymore. We're not really doing regular episodes, full episodes of Diabetes Connections. But I didn't want to wait until I'm doing a full episode or a regular episode to let you hear what is in this one. So hi, I'm your host Stacey Simms. You know that and just like probably the vast majority of you almost everybody listening. I'm home.

I'm very, very grateful to be home with my family. My daughter came home from college and you know, my son's at home. school my husband often works at home. In fact, he almost always works from home unless he is traveling for business. So he's either on the road or in the house. And I'm so grateful that he hadn't been traveling a lot this year already. And you know, we're very fortunate that he can work from home. So what have we been doing? Well, I will share with you I may have mentioned this on a previous episode, we moved recently, just across town, not the best timing because I do have a house to sell now, but we will be fine. We will figure that out. But in the meantime we have a house just set up we have lots of things to unpack. We have lots to keep us busy. We spent yesterday cleaning the house we've been in for about 10 days. And we just did the regular type cleaning that you would do you know dusting laundry, that kind of stuff. I can't say it was a lot of fun, but it was certainly something to do and we realized we were missing a few things including a broom. Apparently our broom did not make it my husband said it was trashed on the way out of the old house. So add broom to the list of things that we are picked up at the grocery store when we had to go out the next time, it's kind of a weird thing to have in your grocery store list. But you know, we don't want to be running around town to different places. I don't even know what's open right now. Got our broom. So my husband who is the much more fastidious cleaner in the family was very happy with that.

Our dog is very happy that we're all home. I think like most dogs right now, she's pretty confused as to why the heck everybody is in the house all the time and why we are walking her and living with her. My daughter and I have started doing yoga. we're grabbing a YouTube channel and just trying out some different yoga classes online. I've been taking yoga in person for about a year and a half. But I'm certainly not very good at it. But it's fun to do with my daughter. But our dog is super confused and she's coming in there with us and wondering why we're on the floor and was very concerned. But now she's calmed down. She just kind of lays there with us while we do yoga.

And Benny I think like most 15 year old has been keeping really busy on his phone, facetiming all his friends. He was taking these long bike rides. Before everything got shut down, he was by himself. You know, he wasn't with other people. But he's staying home now. And I think that's why. So that's our situation. But I wanted to share more of your situation. And that's what this episode is all about.

A few days ago, I put out a call I, you might have seen the graphic, I put it out on social media, and it said, stuck at home, share your voice. And I really wasn't sure if anybody would respond, right? I was trying to make it easy. Just use your phone and tell me what's going on in your world. I did put out a few prompts. I'll talk about that in a moment. But a bunch of people sent in their audio and that's what this episode is going to be just a short episode to share some other voices from the diabetes community.

And then in a couple of days, I will be putting out another episode our next full regular episode, whatever I'm calling them these days. I'm excited about that because I was able to talk to just a great guy, a chef with a child with type one he's an adult child is type one now, but he was diagnosed very young and Mark Been a chef his whole career. And we talked about what are we cooking now that we're stuck at home? It was a really fun interview. And I'll be sharing that in just a couple of days.

I don't know if you can hear it, but I feel like my voice is not that great right now. It is allergy season here. I mean, it's always terrible. And then, you know, I feel like if I'm coughing or sniffling, gosh, you know, I mean, I'm just home, there's nobody to look at me, give me a nasty look or worry about me, but it really is just just allergies right now. So I apologize if you're hearing any of that in my voice. And if you're going through it, you know exactly what I mean. We're just you know, we're all worried we're all on a bit of an edge. So rather than hear from me the whole time, let's get to the people who sent the audio in.

Let me just set this up a little bit. Some of the audio here is great. Some of some of the audio here is as you would expect, you know, people just talking into their phones. There's some homes and some buzzing, that we were not able to take out and that's okay. I was just hoping for some real voices and some real feedback. back. So I do hope you'll listen. None of these clips are especially long, but I think they give really good insight into what we're all going through at the moment.

So we are starting with Molly Johannes she was diagnosed 22 years ago. She lives in Massachusetts. I'm smiling because I have met Molly. I've been fortunate enough to be at events with her. She has a blog called hugging the cactus. And I mentioned I had put out some prompts and some questions. One of which was, what is it like knowing that so many people with diabetes are stuck at home right now? Here is Molly answering that question and more.

 

Molly  5:37

And I have to say that I'm finding it a lot more unifying than isolating. What I mean by that is, it's really nice to go on to all of my social media channels. And for the most part, I'm seeing a lot more positivity than negativity. A lot of people are coming up with different ways to stay entertained at home, whether that's going outdoors and enjoying nice weather when it's around. Or if it's staying inside and pursuing hobbies or spending more time as families, it makes a big difference. I think in my mindset just to see something other than the news, you know, certain social media sites, you kind of log on to them. And it's nothing but a barrage of like what's going on in the world right now. And while it is super important to stay informed, it's also important to focus on mental health. And I think that distractions are one way to kind of make sure that mental health is not ignored. It's really nice to just be able to talk to others and know that we're all feeling the same way right now. So with that said, I'd like to share some of the things that I'm doing to stay busy. So when I'm not working, I am lucky enough to work a job remotely. So that's something I'm very grateful for. So when I'm not working, I am watching TV, watching movies, you know, typical things like that, but then I'm also pursuing hobbies that I don't normally have enough time for, whether that's knitting or reading some new books or you know, just spending some more time I'm working on my blog, which is important to me. And I find that a lot of the times Monday through Friday, it's really hard for me to focus on certain aspects of managing my blog. But now that I'm, you know, spending a lot more time at home, I don't have a commute, things like that, it is nice to be able to work on it a little bit more. But besides that, I am just spending time with my dog making sure that I'm connecting with my friends, you know, all of my group chats, we're just kind of checking in with each other on a daily basis. And I'm thinking of doing a couple of other things to really just promote the feeling of togetherness. So with some of my friend groups, that's probably going to be a couple of virtual sleep overs that we've talked about. We're discussing certain movies that like we can watch together as a group. So that would be really fun. But I'm also thinking for the diabetes community. Like it might be really cool to do a virtual meetup slash Hangout, and I don't know I think I'm gonna look into that and hopefully come up with some dates that might work for people get a whole bunch of people on camera and maybe we can just get to know one another and play games you know, just things that will keep us going. That will Keep conversations going and reassure people that they're not alone right now. That's the big message that I think it's important to bear in mind. So yeah, with that said, Everyone, just stay healthy be well and don't forget to take care of yourselves and keep mental health a priority.

 

Stacey Simms  8:16

Thank you so much, Molly. It is great to hear from you. I really appreciate it. Okay, next is Doug. He is from Florida. He was diagnosed when he was 15 years old. He says he's 27 years into it. Now. He is currently finishing his dissertation he sent in his audio and this you'll understand why I'm saying this one. You hear him on March 17, which was the day of the Florida primary. So he talked a little bit about that. I did not include it all because it was very important to that date, but that's what he's talking about voting by mail. So thank you, Doug. And here's what he had to say.

 

Doug  8:52

I am doing fine. It just so happens that I am a bit of a socially awkward introvert Bert, and the kind of self isolation and social distancing policies that have been recommended by the Centers for Disease Control and Prevention. These are things that come quite naturally to me. I don't spend a lot of time in crowded environments and I'm not a touchy feely person. I hope you all will continue to stay safe, wash your hands, don't touch your face or other people in the future. And consider using some social distancing practices in your ordinary life outside of this type of pandemic situation. For example, mail your vote, mail your ballots, and I hope everyone out there is taking care of themselves.

Stacey Simms  9:53

The next bit of audio came from Saudi Arabia. I was so surprised and really Just pleased to get this. So Sarah, who lives in Riyadh city, thank you so much for sending it in. She was diagnosed in 2004. And she makes a really good point about how everything around us seems to have changed except for diabetes,

 

Sarah  10:15

to all type one D nation. I'm so happy today that everyone can hear me through this podcast. I'm sada. I have been living with Type One Diabetes since 2004. And from Saudi Arabia, I live in Riyadh city. And currently we're living in a very, extremely and exceptional situation. The whole world literally is facing the same problem of a smooth, tiny virus that changes all our meanings of life. I've been questioning myself the last two days. What are the essential things in our life? What do I really want to do? If I don't have any plan today to go to, to study, or to go to visit, what's add stress to me is living with type one D has no No, no break. So I kept saying to myself, everything has stopped. We stopped education. And we have been learning now not really stopped education. I mean, we have stopped going to schools or universities, but we're learning now through virtually and everything we're doing now is virtual, except diabetes. Nothing has changed about it. Every day. I check my BG every day I monitor my CGM every day or every three days I changed my pump site. So everything has changed except my type one D So I looked at myself and I questioned myself, the way we deal with type one D really shapes big Big, big part of our lives and really need to make sure that the way we approach and you will type windy, really healthy, and guide us toward better control. And I'm so happy to share my thoughts with you guys. I was trying to be as much as continious. Thank you Stacy for this amazing opportunity. And I want to say thank you, everyone, and hope you stay safe and healthy. And thank you very much. Thank you, Sarah.

 

Stacey Simms  12:37

All right. This is Michael and a lot of you regular listeners who are also on Twitter probably know Michael without really knowing him because he's very active on Twitter. He's MTL 613 and when I heard him say that I was really excited because I we've been following each other for a long time now, but of course I've never heard him. He was diagnosed with type one at the age of 420 years. ago, he starts out by answering that question about knowing that the diabetes community is out there right now, even as we feel very much alone.

 

Michael  13:12

And I think that's a very important thing. Generally, for me even without, you know, this whole situation, to know that there are people out there who are going through the same or similar things that you're going through is very important to that you don't feel alone. And it's even more important now with this whole virus situation and, and a lot of people, myself included, are trying to stay home and avoid direct contact with other people. So being able to connect over social media and in different ways and to see that other people are doing the same things you're doing even now is even more important than usual.

 

Maddie  13:54

Hi, my name is Maddy. I'm from Arizona, and I'm 14 years old.

 

Mandy  13:59

Hi I'm Mandy from also Arizona. My daughter was diagnosed about a year and a half ago. So Maddie, what is one good thing about being home right now? I think

 

Maddie: 14:11

one good thing about being home right now is that it's easier to control my height a little bit better, and catch my lows. Because when you're at school, you're mainly focused on your work. And then you always hear though, beeps and alarms and then it freaks everyone out and embarrasses you while me. And so it's sort of nice to have it at home and we can control it and yeah, okay. What is one thing your parents do that actually helps you with diabetes? Well, um, they do of course, everything and I love them so much, but my main thing I guess is that my mom especially makes food that is easier on my blood sugar and dinners that coordinate with like, how Having good blood sugars, and it also helps our family in general because she has celiac. And that's hard to have, as you know, eating too and just keeping family healthy.

 

Mandy  15:13

Yeah, we are watching our carbs a little, a little bit. It helps both of us. Yeah, for sure, was a diabetes or community event canceled that you plan to attend. Tell us about it and what you were looking forward to.

 

Unknown Speaker  15:27

So one event that was cancelled was the jdrf walk. And I was diagnosed a year and a half ago. And one of the first things we did was go to the JRF talk. And it was just really nice to see that there are so many other people that you know, we're going through the same things as you and that I always love to see and I made a lot of friends and camp diabetes camp has really helped that and so I would be really missing out on seeing more of that, I guess.

 

Unknown Speaker  15:56

Yeah, but it hasn't been canceled, right? It's just it's a Virtual walk now.

 

Unknown Speaker  16:01

Yeah. So it was still having virtual walk and of course will still

 

Unknown Speaker  16:05

attend,

 

Unknown Speaker  16:06

but it's just different than, you know

 

Unknown Speaker  16:08

in person and we're waiting to hear about camp or keeping our fingers crossed cross cross capsule on. We'll see that was one of my favorite ever things and

 

Unknown Speaker  16:20

of course when you're newly diagnosed it's you get a first step in but it was just one of my amazing most amazing things that have ever experienced. So Absolutely.

 

Stacey Simms  16:32

Okay, thank you. Big thanks to Maddie and Mandy, I appreciate you sending that in. I am thrilled to hear that you are still cooking healthy and doing what you need to do. I'll be honest with you. We have a talk in my house the other day about eating and it was basically about how well we don't have a house full of junk food. But how we're not going to police each other because there's enough stress right now and if somebody wants to eat a big cheese knows, you can go ahead and eat a bag of Cheetos. I will say that Benny is probably eating the best out of all of us right now. He has some wrestling goals that he is still keeping an eye on and he's doing great. But the rest of us might be a little bit on the track to game the unknown about the freshman 15. But the quarantine with what goes with that. quarantine? 15? I don't know. I'll keep you posted on that.

Big thanks to everybody who sent in their audio. I know that's not easy to do. You know, even if you're bored, and you think, Oh, this is gonna be a way to pass the time. It's still hard to open up your phone and press record and then just talk and share your thoughts and then hit send. You know, I get butterflies every time I do a podcast episode. So I can't imagine what it's like for everybody just kind of talking and sending their audio in big, big, big thank you. If you'd like to do this again, let me know I'll put out some different prompts. Because I'm so thrilled to always hear more stories in the diabetes community. Everybody's story deserves to be told. Everybody has something to say we can all learn from your experiences. So stuck at home, share your story. We'll keep doing this if you'd like. I really enjoy hearing from you. You can refer back to the original blog post for how to do this. It really is as easy as opening the voice memo app on your phone. Every phone has something like this, recording something quick and sending it in. As you listen. I know you've heard some different backgrounds there it is better to go to a quiet background if you possibly can. some suggestions, a closet is great. Your car is a great little studio, a bathroom, you know any place in your house that is kind of small and quiet. But we will take as you here, we will take what we get because to me the message is so much more important. And yeah, I cleaned all those up. I can edit those out and things like that. And john Buchanan, of course, my editor really does the magic there. So we want to hear from you. Maybe it's even just an activity With the kids for a few minutes, thank you so much for joining me for listening regular episodes different episodes more Facebook Lives Who the heck knows what we're going to do is we're all stuck here at home. But thanks for sharing your story. I'm Stacey Simms, and I'll see you back here for our next episode.

 

Benny  19:20

Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged

 

Transcribed by https://otter.ai

Mar 5, 2020

The tables are turned this week as Stacey gets on the other side of the microphone. Kerri Sparling, writer of the long-running and popular blog SixUntilMe and now Children with Diabetes board member, interviews Stacey about her experience raising a child with type 1, what led her to claim "The World's Worst" title and much more.

This is part of Children With Diabetes Celebrating Storyteller series. "There are some amazing storytellers in the diabetes community, and many of those folks have spent years honing their craft through blogs, books, and videos. Their stories of life with diabetes bring our community closer. Sharing stories helps make the journey with diabetes less isolated and instead paved with hope and camaraderie. (text from the CWD website)

Stacey was excited to be selected to be part of this storyteller series, and even happier to be interviewed by Kerri. You can watch the video here, read the transcript below or, of course, listen to the audio on this episode.

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

you can win a copy from CWD - must enter by March 20th.

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Join the Diabetes Connections Facebook Group!

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Sign up for our newsletter here

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

 

Episode Transcript:

This episode of diabetes Connections is brought to you by the world's worst diabetes mom real life stories of parenting a child with Type One Diabetes available as a paperback ebook and audiobook at Amazon and at diabetes connections.com. This is diabetes connections with Stacey Simms. Welcome to another week of the show. I am so glad to have you along. As always, I'm your host Stacey Sims. This is a little bit of a different week around here because we released our regular Tuesday interview episode early. If you haven't listened to that yet, it was all about the corona virus and basic information that people with diabetes need to know. Thanks very much to Gary Scheiner CDE and the director, founder of integrated diabetes services. He is always a very calm and informative presidents. He also has a great sense of humor, but I wanted to get that show out. pretty quickly, because you know, of course, as the situation is changing, podcasting is tough to get breaking news out. But we wanted to make sure to get basic information from a good source out to the diabetes community, because I've been seeing and I'm sure it's only gotten worse, a lot of rumors and the beginnings of some panic. So I hope you listened to Gary or read the interview as well, because I put it out as a blog post with just that interview, as well as a transcript with the entire episode. And I hope you've been able to share that a lot of people picked up on it and I really hope it's helped give you some good information. We'll do more as the situation changes if we need to get more information out there. And then this week is a little different because I usually do a mini episode here, where I'm just talking about one topic kind of an editorial, but I'm going to be bringing you an interview that Carrie Sperling did with me now carry most of you know, wrote the long running blog six until me she retired that last year. She's doing a lot of great work with children with diabetes. This is the group that among many other things, puts on those great friends for life conferences, the big one in July every year, smaller regional conferences throughout the year. And they do a lot of really good work in terms of information, and community outreach. So Carrie is doing some of these interviews and I was so excited to be able to talk to her. You may have seen it, they put it out as a YouTube video and I will link that right up. You want to stop right here and go to the video instead of listening. It's the exact same interview except to get to see us and it made me realize I need to work on the lighting in my office. But the information I hope is good. We talked about what led me to write the world's worst diabetes mom a lot about you know, parenting Benny, my son diagnosed right before he turned to 13 plus years ago now, privacy issues Carrie has shared this in her own life. You know, how much do you share online? How much do you not? How do you decide that? And it was really a fun conversation. It's always a A little weird to be on the other side of the microphone.

 

Unknown Speaker  3:02

It's not

 

Stacey Simms  3:02

my comfort zone. But here we go. Anyway, here is the interview that Carrie Sparling did with me.

 

Kerri Sparling  3:09

I am here today to talk to Stacey Simms

 

Stacey Simms  3:12

about this, oh my goodness,

 

Kerri Sparling  3:14

I had to climb on my bookshelf to get it down because I accidentally put it on the shelf that I couldn't reach without a stool. So thank you for giving me morning exercise for that. I appreciate it. But um, I Okay, let me make this more formal. I am very appreciative that you've taken the time to talk to me, and then we're going to broadcast this to the children with diabetes community and then share it through our different channels. So thank you for making yourself available. I know this has been chaotic, getting them on the line.

 

Stacey Simms  3:38

This is what I get out of TV, when really we just need to stick to radio, but I really appreciate it Carrie. Thank you.

 

Kerri Sparling  3:43

My pleasure. And so I want to jump right in because I've already kept so much of your morning already. So just if you could for a minute just introduce yourself to the community that may not know you already so they can get a sense of who you are, and then we'll get into the book.

 

Stacey Simms  3:54

Oh, sure. So my name is Stacy. My son Ben. He was diagnosed more than 13 years ago, which is bananas, time just flies, but he was not yet two years old. He was diagnosed with type one when he was 23 months. I have an older daughter Her name is Leah. She is three years older than him over there four years apart in school and I say that cuz she's a freshman in college now and he's a freshman in high school. I started a blog about a month after Ben he was diagnosed at the time I was working as a morning radio show host I had been a TV anchor and reporter that's the I hate pictures. Because it's all the makeup and the hair and the you know, I'm looking at myself like my headphones are so big on this is not good. I distract myself. Um, but then I started the blog and then four years ago, I started a podcast and then last year I wrote the

 

Kerri Sparling  4:39

book. That's that is awesome. And so so you've been sharing a lot of your family's experience and your personal experience with centered around diabetes, but going right into Stacey Simms, the world's worst diabetes mom. So this title obviously feels a little tongue in cheek because you are clearly very involved, clearly clever and also on top of things that are going on in your kids. In your family's health, so why did you call it this?

 

Stacey Simms  5:03

The book title came about because I had actually been working on a parenting advice book about raising a child with type one for a couple of years. And it was really boring. And it was really like had been done before. There are so many great books, especially, you know, from a layperson perspective, there are so many great books by medical professionals that can really tell you how to better manage, and I didn't want to just say, here's our story, and here's what I think. And I was writing that book, but I wasn't, I wasn't jazzed by it. It was kind of just writing, you know, old blogs and my publisher and said, Oh, put your old blogs together. We'll just put those out. You know, that just didn't sound right. To me. No friends really resonates like old blogs like it. So I was in a Facebook group, having a discussion like I still do, I foolishly still go into Facebook groups because I want to help people and I get help to still and we had a disagreement and it got heated. I really I felt strongly that this was an okay way to manage and the person was so mean and said, you're gonna you're gonna kill your child you're you're terrible parent, you know really went there. And I just said, Well, I must be the world's worst diabetes Mom, you and I slammed the computer shut and I walked away and I was like, Oh my gosh, this is it not not even think about the book but this is who I am I want to talk about making mistakes. I want to talk about living with less fear. I want to talk about not always being a slave to your beats. Are you okay? Do you need a juice box?

 

Unknown Speaker  6:33

Sorry, and beeping, then one of those days, but everything is fine. Thank you for asking.

 

Stacey Simms  6:36

But I just wanted to, I realized in that moment that I did have something to say. And it wasn't just about the old blogs. And I went back I screenshot of the conversation because I thought well, maybe this guy is bananas. It's gonna come after me. But I also deleted it. Because we didn't need my anger out there either. It wasn't just Hey, I was ugly too. So I got past that and I thought let's talk about all the mistakes I've made because we Made a ton of mistakes. And it's not a question about being a bad parent or a good parent, sure, you're gonna make mistakes with your kids, whether they have diabetes or not. And let's use those examples of mistakes to talk about resiliency and confidence and, and I think my son is better off for all the mistakes I made.

 

Kerri Sparling  7:16

I hope that applies to parenting outside of the realm of diabetes, because I'm not a perfect mom myself. And so it's reassuring to hear that stumbling leads to success, even if it's a modified version of the success you thought you were going towards. So I really appreciate that. And I also like the fact that it's not like here's how to be perfect by Stacey Simms, because that really puts people on their heels like you can't take advice from someone that you have on a pedestal it's always a lot easier to have a peer to peer conversation and that's why I feel like your book reads through it very a resonated for me and I'm an adult the diabetes not raising a child with diabetes but reading your perspectives gave me a lot of insight on maybe conversations that my mom and I never had or my email just think the cross Can you see that when it comes across You know, you're supporting the note cuz he's just some weird emails. But I just have a couple notes. I just wanted to look through this. But when I was reading through the book, there's the story of the first night that you guys are home with, with Benny. And, and it hit me really hard because I was thinking about my own two kids. And like I said, they don't have diabetes, but I was putting myself in your position. And it's so easy to be the person with diabetes from my perspective, but it is very, very different to be the person who carries just as much, but it's like 10,000 feet away for so much of the experience. And so do you think that it's important to have those stories shared like stories like yours and stories from adults with type one, so that we can kind of create a, an amalgam story sort of thing, like, why is that important?

 

Stacey Simms  8:37

I think it's a great question, because it's it's so important to recognize that the two experiences run in tandem, but they are so separate, as well. Right? We're never really going to separate them. We can't pretend they're the same. So a person with diabetes is having one experience a parent of a child with diabetes is having a totally different experience, obviously tied to By diabetes, and I, you've already said, Oh, I think it's you know, it's worse to be the parent, you've implied that by something you said, which is fine. I mean, I almost every adult with type one I know, says all my mom, it was so much harder on her.

 

Kerri Sparling  9:10

We're not saying it to make you feel better. We're saying, we believe that fun. Yeah,

 

Stacey Simms  9:14

I understand. But I disagree, because I'm not beeping, and I can walk away from it. But at the same time, it's not a question of comparing, right. And I didn't mean to put you on the spot. I'm not saying that you're doing that. But I think it's really important that we see these experiences as equally important, but very different, but then tied together. So telling all of these stories. I'm hopeful that Benny, when he gets a little older, we'll look back and read it. And he knows what he knows the stories we actually shared that ahead of time. We talked about what I could put in the book, but I'm hoping that he'll see it and kind of think, Oh, well, that was not my experience, but I'm glad to know it.

 

Kerri Sparling  9:50

Well, of course and you were saying it's not it's it's not about comparing them. I think it's about making a cohesive story around them like my low felt like this, but it looked and felt to my mother like this and meshing those two stories together together gives us a broader experience touch point. And I think that's so important, especially for like a teenage kid who might pick up your book and read it. And when they're in that angsty, angry part of diabetes, and they might be so furious with their parents to get your perspective on that might help segue a good conversation with their own parents. That's why I don't think this book is just for parents of kids with diabetes at cross collateralize is the whole community you know? I don't know. I think that's accurate. I'm gonna toot your horn for you that way.

 

Stacey Simms  10:28

One thing I think it's really interesting to talk about is you mentioned like the not perfect parenting thing. And I think it's we're under pressure, regardless of diabetes is parents right? You can't win you really can't. But I also think it's funny when you look at a lot of parenting blogs and parenting writings. It's either I'm a perfect parent and you should aspire to look like this. It's perfect Instagram photos or whatever, you know, look like us do like us eat like us. Or you have the oh I don't know what I'm doing.

 

Unknown Speaker  10:54

I'm so crazy on motherhood is that you know, I'm a man I look at my and I really that doesn't speak to Neither,

 

Kerri Sparling  11:00

right we are middle lane.

 

Stacey Simms  11:02

We are smart, we are strong. We are sometimes a mess. We are sometimes perfect. And I really I'm not. I know that sound like I was making fun. You know what I mean? If these archetypes, especially women we get put into, right. I'm a hard driving success story or I'm so clumsy. I fell into my man, you know, I mean, I hate that. So I tried to really in this book, kind of encapsulate, you know who I am, but who I think a lot of other moms are too, right. competent, confident,

 

Kerri Sparling  11:29

but not having it all together. Now might be an important part to bring up the fact that I'm wearing normal clothes from the waist up, but sweat tears from the waist down. So like I think that sort of is the it's the template for that. They need you there we go. Wait, you you would actually skipped ahead to something I wanted to ask you about. Sorry. Should No no, that's fine. This is good, though. When you're using the questions, I know and I don't normally write my stuff down. But I'm organized today. Um, but yeah, we talked about when you first started sharing your stories, and Benny was home that first night That sort of stuff. And you used to write about Benny's personal experiences and yours. And as he's gotten older, and his experiences become more his, you've said that you've stepped away a little bit from telling his stories and have embraced. I can't describe it for you. But like, what, what's it like to decide to share x in the beginning, and what makes you transition to the y?

 

Stacey Simms  12:19

I think it's such an important conversation. It was interesting in the beginning, and I do wish that I'd given my kids just a little bit more privacy by changing their names, or giving them nicknames. The problem for me was I was already on the radio. And we had a show where it was mostly political news. But we did talk about our personal lives a little bit. So my listeners knew when I started at that station, I had a one year old daughter. And then when I was working at that station, I was pregnant and then I had a baby and here's Benny in the hospital, you know, it was a different experience than just blogging. So it didn't really occur to me at the time and social media. Certainly what it is now isn't wasn't then what it is now. It was a different experience. But when you have a toddler, you have a baby, I mean, even going back, I was Careful at the time not to overshare I but as he got older you realize, you know people are reading this people are looking at this. There were there were only some experiences that I felt comfortable sharing and it wasn't just the good stuff, right? We shared things that things went wrong. I thought that was important. But I'm I'm on the record. I sound like a broken record. You know, I don't share my Sunday one. See, I don't have that. I don't like you know, do not share photos of your child in distress. You know, no hospital pictures. I wish I had pictures of him in the hospital and he was diagnosed for me. Sure. But you know, we didn't have our phones with us. 24 seven at that point, especially didn't have cameras on them, which sounds so ancient.

 

Kerri Sparling  13:43

I mean, this is what it is right? Like when I was diagnosed with diabetes, I had to pee in a bucket to test it. So like things had to not a bucket. I mean, let's be realistic about this. But you know, things have progressed and with it the the conversation about what to share and not to share and so, I mean, you talked already about not sharing his anyone see? And I think personally, I am on the same page with you about that no one needs my personal data points because their mind in their personal, but that there's a broad spectrum of decision making processes around that sort of stuff. So what made you decide not to do that?

 

Stacey Simms  14:14

Well, I think I'll just put a caveat in there, I think, to not mindlessly share, right? Sometimes it makes sense if you're trying to talk through something or get advice or share a situation or, or say, hey, look at this difficult situation we worked through and now we're celebrating I mean, just mindlessly is the word I tried to use about it. But what changed was when he was about seven, I think I read something by Moore McCarthy, who is a mentor of mine, and she's longtime blogger, author, I mean, yeah, faculty, you know, I probably saw her speak there and got this information, but she really encouraged me and others to think about it. And once I stopped to think about it, I realized there's no reason for my seven year olds health information to be on the internet. I'm not posting my weight and my cholesterol. And you know, my blood pressure. It's the same thing. We don't see it that way, right? But it really is. And that once I thought about it, it changed everything for me and I started sharing more, you know, great endo visit no changes, everything's on track or great endo visit. We had a whole conversation about changes we have to make sure sometimes like bad, you know, bad can be good when you get the information. Yeah, I love the finger quotes.

 

Kerri Sparling  15:27

But I feel like that's an important part of it too, because it's not truly bad or truly good. There's a right

 

Stacey Simms  15:32

dial up stations get better when you get away from the numbers. I agree. You know, you can you can have more in depth about how you're feeling and what advice you're looking for. And that sort of thing. So I've shared with friends when I've said old I'm upset about this, or can you help me with that? That's different.

 

Kerri Sparling  15:46

Yeah, no, of course because that's your actual personal life but broadcasting it to the broader internet as a different person retired. As a kid who grew up with Type One Diabetes, that's my perspective. And yours is parenting a kid who's growing up with Type One Diabetes. How How do you feel about I mean, you see a lot of memes from parents about parenting in general where they have like the curlers, half in their hair, and the bathrobe and the coffee cup dangling off of one arm, and they're like, parenting is so exhausting. And that feels universally haha. But when I see that same sort of meme applied to diabetes, like, this is what a parent of a kid with diabetes looks like. And they just look bedraggled and rotten and exhausted and as an adult with type one that applies a guilt to my experience that I didn't see coming. And so I'm just curious what you think about things that paint diabetes in a light that maybe they don't realize is shining directly on their kid. When parents tell those sorts of stories? Yeah, it is a great question because the reality is, maybe you didn't sleep that great last night, right? Maybe you were up three times treating a low. But are you talking about me because that was my nightlight?

 

Stacey Simms  16:49

Well, I do have Do you have a baby can still because there was a signal in my house. No, I

 

Unknown Speaker  16:52

do.

 

Stacey Simms  16:55

It No, I'm talking about the parent, right. So if a parent has to do that, and then wants to go on from But the next day and start talking about how hard it was. I can understand that. But I do think and my favorite meme about this and I don't think it started as a diabetes parenting meme. I think it's just a parenting meme. But it's like, you know, an 87 year old woman, and that it says like, well, parenting is hard. You know, my I'm celebrating my 23rd birthday tomorrow. Money. But I do think that you've hit it on the head, that's going to be my would share about diabetes. I think it's difficult to know where to draw that line. And we don't, we don't think because what we're doing not to get all psychological. But in doing some research for a recent podcast I was doing I found a great article about this and I can send you the link but when we're sharing things like that we're looking for likes, right because our brain As humans, we need support. We're looking for community. We actually like to get the good Brain Stuff going the dopamine or whatever, when you get the right weights real and physical and social hosting, something like that, you know, is going to bring in more of that. And it's not made up. It's not fake. Oh, yeah.

 

Kerri Sparling  18:09

Feeling it all

 

Stacey Simms  18:10

really happens. But there are better ways of doing it. I think and as you were alluding to, if we, as parents of kids with type one, don't listen to adults with type one, we miss out on this kind of conversation, because no seven or eight year old is going to say, you know, it kind of hurt my feelings or I, I really processed some guilt when you posted that, right? They're not gonna say that they may not even realize it, but we need to be mindful of that kind of stuff. And I think it's fine to have fun and you know, maybe share that privately. But um, you know, I I'm really try hard not to make diabetes, the focus of everything and not show that guilt because that's just parenting anyway.

 

Unknown Speaker  18:48

Right? It's just an added thing.

 

Stacey Simms  18:50

It is just an added thing. It's like not to get too far off topic, but when people are freaking out about sending their kids to sleep overs, sure, right, because something might happen when I was in second grade Jennifer Look, it's like At my house, we had a babysitter. We didn't eat that my parents and she put her leg on my bed. It was the 70s. It was like some metal crazy trundle bed. She cut her leg bad enough that we had to go to the ER and get stitches.

 

Unknown Speaker  19:10

Oh, wow. How do you prepare for that? I don't think you do.

 

Stacey Simms  19:15

Things happen on sleep overs. emergencies happen. Parents who say I'm gonna have sleep over have to be prepared for weirdness. And to me diabetes falls under that category. But that's a decision you have to make. And I think it's the same thing with that kind of a mean, you kind of have to make the decision of, there's a difference between, everything's fine, everything's fine. Everything's fine, which I've been guilty of for a long time. It's fine. It's fine. I'm not gonna worry about it. I'm good. I'm good. I'm good. I'm good. I don't need any help. I'm fine. And there's a difference between that and what was me everything's terrible. Like, like sucks and you know, oh, my God, diabetes is the worst. You gotta you gotta find that medium and you've got to, at least to your children, I think it's important to fake it, but be careful about stuff like I might.

 

Kerri Sparling  19:57

I like what you said earlier because I read a lot about my fulness and being mindful and making sure that you're mindful, but the fact that you've cited mindlessness as a potential alternative to that, like, don't be mindless, don't share mindlessly consider the you know, the course of your actions that you're taking and how it might influence your kid. That is a huge takeaway already. For me from this conversation. It doesn't apply just to parenting diabetes, I think it applies to the whole mess being Don't be mindless about the things that you're sharing. I think that's a really, really good tip.

 

Stacey Simms  20:26

It's funny because I stink at being mind. Right? You're like, Oh, no, take your time when you eat and drink your tea and fever and, you know, take them home. I really don't think I can do that. But I can take an extra 10 seconds and think do I want to post this photo?

 

Kerri Sparling  20:39

Of course, not. In a mindfulness exercise once I was asked to spend one minute eating one m&m, and it was really strange experience and I'm sure it was really effective, but for me, it made me feel very stressed out. We can get into that later, but because we've talked a lot about parenting, and I'm sorry to be going back to my notes here. You You talked about it experience where you and your family are you at least and Benny and Leah met Nick Jonas, and how this was truly more of a thing for Leah, your daughter than it was for your son who is the one who has diabetes. And there's something that you wrote that really stuck with me because I feel like parenting a kid with diabetes, that parent is acknowledged a lot, which is fantastic. The child with diabetes is acknowledged quite a bit because they become the focal point of that narrative. But the siblings of kids with diabetes end up on this weird purgatory peripheral area, and they're not often acknowledged. And you wrote that at the end of meeting with Nick Jonas, that you had said the diabetes was in our lives. But she Leah knew we wouldn't let it take over she knew she wasn't going to be left behind and reading that now gives me goosebumps for reading it then also did too because it acknowledges a group of people that need just as much support as I do as a kid, as you do as a parent. And when I think about children with diabetes in the organization, the programming really speaks to that as well. It's not just for parents, it's not just for adults with type one is for the siblings. It really embraces the whole family. So because your wrote that awesome line. Could you say a little bit more about supporting a sibling

 

Stacey Simms  22:04

and, and the children's diabetes? I mean that friends for life Leah has come. And Mr. Summer schedules are always crazy. So it's rare that either one of my kids can come and like I still go, but I had a I had a blast, and she didn't really think she would. She kind of came as a favor to me.

 

Kerri Sparling  22:21

But she was when she was I

 

Stacey Simms  22:23

think she was 14 or 13. She was a teen. So she was in the teen programming. And you know, Benny was still too young to be in that programming. So they were separate. Yep. And she knew she was gonna get to go to a Disney park, which was amazing, you know, when state of fancy hotel with me and it was great. And she I don't think I saw her much. You know, she thought, Well, I'm not gonna do this. You know, we'll see how it goes. And it was wonderful, but it's really hard. You know, that's one of the few programs that there is for siblings. When when he was diagnosed, we got this reminder really off the bat and it did help us set the tone he was in high But on the Saturday, and on Sunday, I had an event that I had planned. And I do talk about this in the book. But it was an ice skating event uptown. So uptown from my house is about 45 minutes. Okay. And I was the only link between these two groups. It was a group from near my house and a group from your my work. Well, the skating rink was my work. They sponsored the rink. I didn't. I was working at a radio station that sponsored the rig. And I knew that somebody could take care of it, but it was going to be difficult. And Leah reminded me like we're still gonna go ice skating, right. We're still gonna go ice skating because I live in the south. Ice skating is exotic. No, it really is. I grew up in New York. I'm like, oh, there's never been she likes frozen ice that you walk on. Amazing, right? Magic. So I said to my husband, I'm like, We're going he's like heck yeah, go take her and he stayed the hospital and that was the day after my not your two year old was diagnosed and I'm thinking is this the right decision? Is this this is a terrible This is the world's worst diabetes mom because here I am leaving the hospital. But as soon as I I got outside I knew was the right thing. And that was the day that we said we can't let this take over our lives. So you have to be careful. Like, I don't I don't I say this not to judge but just again with that mindlessness and that mindfulness or you know, if you signs in your house that are like in this house, we're blood sugar fighting, you know, ketone, chicken, whatever it is, look, the science we will have in their kitchen. Nobody, I mean, if they're all diabetes related, of course, yeah. You know, have to be kind of careful unless you also have ice skating, hockey playing, you know, unless you want to have a litany of everything your family does. You know, I'm mindful of like, how many t shirts do I actually wear that say diabetes stuff on them all the time. And making sure like, I have stuff from my daughter's programming, and frankly, from Benny's programming that's not diabetes related. It's that kind of little thing I think that siblings really pick up on, like, if you name your dog or your cat or your goldfish after diabetes stuff, you know, it's a family pad. I mean, if it's a diabetes alert doc that might be different. I just think these are things that as simple We kind of forget, you know, they're always they're always watching and they're tallying. And you have to be honest with them that diabetes gets more attention. But with Leah, just having the conversation over and over again really helped. I mean, when she was 15, she and I had a great conversation about it. She said, I was really upset about it. And now I get it. Oh, it was amazing. I mean, he probably is back to being upset about it now.

 

Kerri Sparling  25:22

But it was great. You guys can talk about it is really nice, because a lot of times that animosity isn't voiced, and nobody has areas to sort of air their concerns. And so it's good that you give her space and like we mentioned in friends for life, people have that space to get that stuff out there. Oh, yeah.

 

Stacey Simms  25:35

I'm the over communicating Mom, you're like enough.

 

Unknown Speaker  25:39

Talking to me.

 

Kerri Sparling  25:42

We've talked about community, we've talked about sharing, we've talked about Facebook and the pluses and minuses of that sort of stuff. And it and it led me to the story that you had written about Benny losing his insulin pump. And then after that, you would, which I think is an amazing discussion about the cost of supplies, and how even small Children are mindful of the cost of things. And we'll get back to that in a second. But after that story you had mentioned, places to find support for when you have gaps like that, or you have issues like that. And I would love some perspective from you on as a parent whittling down this massive diabetes online community that we have access to, to a manageable size that kind of caters to what people might be looking for, like, advice for someone who's just jumping in and saying, there's so much how do I find what's best suited for me?

 

Stacey Simms  26:26

Yeah, absolutely. I think the best thing to do is if you're already online where where do you like to be? Right? Do you like Twitter? Do you like Facebook? You like Instagram, Pinterest? You got to find your house, like where do you like to live? And then once you're there, find your people. And let's have a Facebook cuz that's probably the biggest for parents. I know Instagram is a lot bigger than the last couple of years. But Facebook groups are still really really active for parents. And my advice there is be careful again, not to turn your Facebook into diabetes book which is what happened to me. I am in I am in 50 Five Facebook groups about diabetes. Now granted, I joined Facebook in 2008. So I had around for a while.

 

Kerri Sparling  27:07

Well, I'm just it was the look on your face. It wasn't like I'm so proud to be in 55 horrified to be in 55 it was a real mashup of the both

 

Stacey Simms  27:15

emotions. And that's exactly how I feel. So, because I'm like, I want to be here. And I like the vibe of this group. I like the information in this group. And I like to put my podcast in this group. But what I did was I muted the majority of this groups and that has been phenomenal. If you're not familiar as you're watching or listening. It's very easy to do, you can just mute the group. I think you unfollow the group might be the technical term, but you don't leave the group. So that way, when you want to dip into those waters, it's up your time. And my Facebook feed went back to being my real life, which is my friends, the stuff does the dumb things. I follow in a little bit of diabetes, and then I can jump back in whenever I want to. And Facebook Of course will find you you know if there's something interesting, put it right in your face, on Twitter if you're there, which is Just a crazy place to be the best, just all the politics and mess but DSM a is still your diabetes, social media advocacy is still the best hashtag on Twitter. They still do the Wednesday night chats. Those are wonderful. Instagram I'm struggling with just a little bit only because I like the realness of the stories and things that people I know that out. But I've been trying to follow more people and I'm not knocking anybody, you're all wonderful and beautiful. But I have talked to two influencer type people and I complimented one of them. That was such a beautiful shot in your hair looks so good. And you know, she said, Stacy, I have a hair person and a photographer.

 

Unknown Speaker  28:40

Diabetes person. What

 

Stacey Simms  28:43

if I had if I had a hair person and photographer I could change the world. I do wear pants. I'd be wearing pants. I would have better headphones because wearing Benny's beats I thought these would be smaller. You have cute little earbuds I don't know I haven't no here but I studio cans that are like this big I thought would be even more Your cancer headphones in the biz. But I just, you know, I can't do the influencer thing. So you but you as you listen, you might love that that might be your thing, go for it. But I think you have to find where you live where you where you feel comfortable, where's your vibe, and then you'll find your people but don't let it get overwhelming. And if you find somebody that wants to call you the world's worth diabetes. You walk away walk away unless you have a book. But I mean, really, it's not worth the argument. If someone tells me I'm wrong, I'm not going to change their life probably. Maybe I can help. I've got a good discussion going in my local group right now about finding babysitters. There are people locally I run a face for parents in the Charlotte area. Okay, started a few years back and it's been amazing. And there's a discussion right now people like I will never be able to leave my children alone. Yes, you will. And here's how. And so we're trying to help each other kind of get past that right. So

 

Kerri Sparling  29:59

that's See, I feel like the internet is fantastic. And it's done such a great job of connecting people who don't live anywhere near one another. But when it comes right down to human connection that people really crave in those moments of need, that hyper local stuff is huge. You can recommend a babysitter to me, but they're of no use to me in Rhode Island. But for the people who live down the street from you, they can go and call that person and they can actually hire them out. And that's, that says a lot to about the diabetes community how willing people are to give those really harder and resources and to share it with their,

 

Stacey Simms  30:28

with their people. That's beautiful. It is absolutely amazing. And you think I mean, I know this is a CWT interview, but the first thing that comes to my mind is going to that conference or any of the conferences that they put on. I don't even worry about what I'm packing my pack everything Ben he needs but you know if he's anything, somebody's got it, and they'll have you a 2am you know, it's just an amazing community. And I don't know, I think especially locally, knowing that we might see each other at the grocery store. Like that Facebook group is probably one of the nicest groups. I'm in

 

Unknown Speaker  30:59

You'll have to own what they say, right? Because they may see you over avocados.

 

Stacey Simms  31:02

I know who you are, right?

 

Kerri Sparling  31:06

We've run through the questions that I had structured for the book and my preparation. But is there anything else that you feel like it would be really pertinent to share with the specifically the CW, the audience,

 

Stacey Simms  31:14

one of the things I've learned just doing the podcast and now on this book tour that I've been on this year, it's just fascinating as the technology gets better and better, and you know, Benny's on the newest software from tandem, and, you know, there's all sorts of great stuff coming out. It's interesting how the change from 13 years ago seems to be almost more fearful. And it's not that it's not so much that people are afraid to let their kids do things. It's that they're afraid to let their kids get out of range. I think I'm seeing that a little bit among adults as well. Now my adult view is skewed to a lot of the influencers and people that you know, sometimes I see in person, but there's this that's another thing with the the world's worst is, you know, talking about staying in range was never part of my repertoire was like go play football, and we'll figure out how to put diabetes in the picture. I'm learning that a lot of people have. We have amazing technology. It's changed so much just in the last few years. And we need to encourage each other to use that technology to live fuller lives, rather than use the technology to post graphs. And it's just remarkable to even say that to a parent who was diagnosed, compared who was diagnosed, I mean, I've gotta watch language. No, I

 

Kerri Sparling  32:23

will go back to that in a second. You're right. You are right. My mommy got me it was a wee thing. Just, it was a different version of wheat. So that's a very fair statement.

 

Stacey Simms  32:31

I think with a 15 year old to I'm really trying to change my language over it's hard

 

Kerri Sparling  32:35

so of him. So I mean, his health is is your mental well being right. I mean, there's, there's no separation there. It's sorry to go on a tangent.

 

Stacey Simms  32:43

Well, this is a great discussion. This could be for another time too. And we'll talk more in person, but I think it's his diabetes. And I'm it's the family is affected, but it's his. So that's what I mean. And I completely lost Richard.

 

Kerri Sparling  32:56

Oh, wait. I was waiting to with that. I started ranges range, using technology to your benefit. I sorry,

 

Stacey Simms  33:06

I got all I get crazy bad language right now it's it's really hard for me to change over. But I just feel like we're finding that this the state of the art. I mean, I know what I'm saying in my community, we have a pilot program where your child is diagnosed, and they give you a dexcom in hospital when you go home. So it sounds great. But the problem is that there unfortunately, I don't know there's enough education and I'm not slamming the CDs and dexcom here has nothing to do with that. It's just the diabetes is hard. And so see everything from the beginning. Maybe you get used to that, but then the dexcom comes off and they don't wanna go to school, or they don't want to go to the waterpark, or they don't want to go on that that field trip or that overnight because they've never been without the depth causeway. And we're more and more and more of that, where I would be like, Oh, I hope your inset still on, you know, an hour but you learn resiliency, you learn stuff like that. Yes, the worst. And that's the story. When he was three, we were at a waterpark. That's in here. Instead came off and his blood sugar went really high because he was terrified of shots in sets at the time. And I thought, you know what this is going to be an hour to he's going to be fine. The long term, my indices stuff like this is okay, as long as we don't do it a lot. And maybe the running around will bring him down. It didn't, you know, so he got with Ari was 400 we change this instead, we got him home, he was fine. No ketones, blah, blah. But in my local group, someone had posted my kids dexcom came off, I'm not sending her the waterpark. I'm like, come on. Yeah, I got it. Right, we got to use this stuff to live better not let it restrict us long way of getting to that point. And that's really where I think I am right now. Because, you know, the technology is fantastic, but your stuffs gonna fall off. Things are going to fail. You know,

 

Kerri Sparling  34:44

you know, you have to continue on several life after diagnosis thing.

 

Stacey Simms  34:50

So it's been a long time. Permit this year, I can't believe it. Oh, and then you get to write about driving with diabetes, which is a Book unto itself, start, the book pretty much stops in sixth or seventh grade. So I'm not going to say that I'm an expert at high school yet, because I've only had one kid go through and she didn't have diabetes. So

 

Kerri Sparling  35:12

Nick Jonas at one time, so there is that there is that kind of coasting through. But um, but and so you have just been so generous with your time and your perspectives, I really, really appreciate it. And if you could just do me one solid real quick and let people know where they can find you online and where they'd be able to pick up a copy of your book. And obviously, we'll be including links to that, you know, and all the notes that are around this video, but hearing it from you is great.

 

Stacey Simms  35:34

Oh, thank you so much. I think the best place to go is the podcast website, which is diabetes dash connections.com. And then from there, it'll link to every place else the book, the podcast, the blog, blah, blah, blah. And

 

Kerri Sparling  35:45

so what's the actual URL for that

 

Stacey Simms  35:48

diabetes dash connections. com. Perfect. And I would love to do a book giveaway.

 

Kerri Sparling  35:55

Oh, we would love to have a book giveaway so

 

Stacey Simms  35:57

I can give away. Let's do this. Let's do a paperback And let's do an audio book. Because the audio book was really fun and interesting to do. If you ever do an audio book, it's quite the experience, like reading a dramatic play. It was very strange, very strange, totally different experience than writing it. But we can do a paperback giveaway. And then the audio book, that would be my pleasure, thank you.

 

Kerri Sparling  36:18

That would be amazing. And I will put a link to the giveaway page in this video and on the web page. But Stacey, thank you so much for your time for your perspectives for what you've given to the diabetes community and just being my friend, I appreciate that.

 

Stacey Simms  36:30

Thank you for giving me an excuse to put lipstick on today. The giveaway is open until March 20. I will link up all of the information you need. It is at children with diabetes at their giveaway page. You have to go there you can't do it on social media. We're giving away a copy of the book in paperback and an audio book as well. I'm really looking forward to seeing everybody from friends for life and children with diabetes at their conference coming up at the end of this month in Indianapolis. I'm hoping the travel plans you know stay the way we hope we are watching The virus situation I'm really not sure what's going to happen with travel. But Fingers crossed right now that we are able to do this. And I really appreciate partnering with them on this giveaway and being selected for one of their storyteller interviews. So it's really fun. Okay, our next episode next week, we should be back to normal around here minimum normal being a relative term with me. But our next episode is going to be focusing on Lilly, Eli Lilly announced almost two years ago now that they the makers of human log are getting into the pump and pen business. So we will talk to them about how they're progressing on this connected system. It's a smart system and they are partnering recently announced with dex calm, so we will be talking to them about the progress they've made and what it means for the industry. That will be next Tuesday. Okay, I'm Stacey Simms. Until then, be kind to yourself.

 

Diabetes connections is a production of Stacey Sims media.

Benny  38:02

All Rights Reserved all wrongs avenged

 

Transcribed by https://otter.aid by https://otter.ai

 

Jan 7, 2020

Aerospace engineer April Blackwell works at NASA’s Mission Control. She dreamed of being an astronaut but her type 1 diabetes diagnosis at age 11 changed everything. Since that day, though, she has found ways to break down barriers and pursue her love of space.

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

April calls herself a "rule-questioner" and shares where asking those questions got her. She and Stacey talk about everything from family – she has two young children – to what it’s like to work as part of history in the space program.

Join the Diabetes Connections Facebook Group!

In Tell Me Something Good, a milestone for a tween with T1D – and her whole family gets in on the celebration.

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

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 (Note: this is a rough transcription of the show. Please excuse spelling/grammar/punctuation errors)

Stacey Simms 0:01
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

This week, aerospace engineer April Blackwell works at NASA's mission control. She always wanted to be an astronaut, but she was diagnosed with type one at age 11. And that changed everything. But since that day, she's found ways to break down barriers and pursue her love of space.

April shares where asking those questions got her and we talked about everything from family - she has two young children - to what it's like to work as a part of history in the space program in Tell me something good a milestone for a tween with type one, and the whole family gets in on the celebration.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider.

Stacey Simms 1:32
Welcome to our first full show of 2020 Happy New Year everybody. Hope your year is off to a great start if you're new to diabetes connections, welcome. I'm your host Stacey Simms. We aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed 13 years ago, just before he turned two. He's now a freshman in high school. He's 15 years old. My husband has type two diabetes I don't have diabetes, but I have a background in broadcasting and local radio and TV news. And that is how you get the podcast.
As you have heard, if you are a longtime listener, some new things this year, we have some new sponsors. I dropped a minisode, a short episode last week. We're going to be doing those every week. So you get the full episode, which is something like this where it's an interview and we have some segments and then you'll have that minisode and planning for every week right now. We'll see how it goes. Which is a much shorter episode just me on one topic. And please follow along on social media because we're doing more new stuff this year. On the Tell me something good segment which has become really popular in the show. We're putting that out on social media every week, making sure you're following on Instagram. I am Stacey Simms on Instagram, there's only the one account on Facebook, Diabetes Connections the Group, although I do post everything on our page, but you know how Facebook is sometimes they are just obnoxious and don't show you everything you want to see.

Something else I'm trying in the new year is transcription. I am putting in the show transcription of every episode. On the episode homepage. You can go to diabetes dash connections dot come, and you scroll down. Make sure you look at the current episode, click on that. And in the show notes will be the transcription of the interview and hopefully the whole episode as well. as well. Something new we're trying we'll see how people like it will see how you respond if it's popular and people use it will keep doing it. I have had a lot of requests for the transcripts over the four and a half years of the show and as Technology is better and better. It's been a lot easier to get that done. Done. Maybe I'll do it behind the scenes minisode One of these days and tell you about all the changes that we've gone through and some of the technology as podcasting really grows, how things have changed, but I know you're here to talk about April and NASA and how she got involved in the space program. It's such a great story. My talk with April Blackwell in just a moment, but first
Diabetes Connections is brought to you by One Drop. One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes. For people with diabetes. One Drops glucose meter looks nothing like a medical device. It is sleek, compact, is 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 Drops of script You get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach. If you have questions you don't feel like waiting for your next doctor visit. Your personal coach is always there to help. I am so excited to have One Drop on board. Their program is amazing. Check them out, go to diabetes dash connections calm and click on the One Drop logo to learn more.
My guest this week is not someone who takes the answer No, and accepts it and goes away quietly. April Blackwell grew up dreaming of the space program. As you'll hear, she watched out for NASA news. Like most of us watched Saturday morning cartoons when we were kids. But a diagnosis of T1D in sixth grade grounded her astronaut dreams. But how did you decide to carry on anyway? You know what did you have to do? To get where she is at mission control. her blog name and her Skype handle are nerdy April, and you'll hear me ask about that. But I gotta tell you, when you talk to someone on Skype, which is how I do a lot of these interviews, the the avatar, the logo, whatever you want to call it, of their name, or their face is on the screen. So the whole time I was talking to her, it said nerdy April on the screen, which really made me smile, all right here, which really made me smile on the screen, which really just made me smile, and I did have to ask her about it. Her story, though, is it's a story of grit, of asking questions and refusing to give up. Here's my conversation with mission controls. April Blackwell.
Stacey Simms 0:03
April, thanks for joining me. I'm sure you're really busy. And I appreciate you taking the time to talk to us. How are you?
April Blackwell
I'm doing wonderful. How are you?
Stacey Simms
I'm great. And I'm excited to be talking to you. I have lots and lots of questions. But I have to start with, with your name online and on Skype as we're talking nerdy April. Did you reclaim that nerdy title?

April Blackwell 0:27
Oh, I am a I'm a proud nerd. I think all nerds who are truly nerds are proud of it. So it actually started though, because the my blog title started as Nerdy April's Space Adventures. And if you take that as an acronym, like, you know, everything NASA related, it spells out NASA so it kind of was a little bit of a play on words and acronyms there, but it kind of turned into just Nerdy April and that's how I've been rolling lately.

Stacey Simms 0:59
Okay, So I want to ask you at the blog, I want to ask you about NASA, but let's start at the beginning. You knew that you wanted to be involved in science and in space from a very early age, right?

April Blackwell 1:13
Yeah, I was only about five or six years old. I was in a kindergarten and my dad actually, he is an aircraft mechanic. And so there's a little connection there. But he also is just a deep lover of the space program. And he grew up in the Apollo days, sort of that romanticized moon landings and everything and he was just an amateur but it and his love for the space program just really captured me. And so that's kind of where that all was inspired from.

Stacey Simms 1:45
What were you doing, though, at age five? I mean, when you were with your dad, looking at stars were you watching launches?

April Blackwell 1:52
We weren't watching launches. I grew up in Arizona, so it's pretty far away. Florida, where most of the launches happened. Well,

Stacey Simms 1:58
(laughs) I was thinking about on TV.

April Blackwell 2:00
Yeah, yeah, I definitely watch some on TV we did have a very rudimentary telescope. So we would go out and mostly look at the moon since that was it a big target we could watch. It didn't have a tracker or anything on it. So it was all manual. And it required some fine tuning by dad before I could look through it. We built model rockets together and launched those later on.

I went to sort of local science camp during the summer, and started getting excited about computers and everything that had to do with science. So robots and engineering type problem solving. And so it just stayed with me my whole life.

Stacey Simms 2:45
Wow. So when you were diagnosed, not too many years later, you were 11. What happened? were you hoping to actually be an astronaut at that time?

April Blackwell 2:55
Yeah, so I i think that was always the pointy end of the spear for was to be an astronaut. And, you know, that's when you watch TV and everything those, those are the people that you see. And so that was always kind of my final goal. When I was diagnosed at 11, it took a little bit of time for me to realize that, you know, astronaut was going to be more difficult now that I had type one diabetes. And some of that sort of came into focus later in my life. But at 11 it was kind of just heartbreaking. You know, I was watching launches and getting excited about space, but then knowing that that probably would never be a reality for me.

Stacey Simms 3:41
So at age 11, you know, I guess you have many choices, but you can say to yourself, well, that's that I've got to find something else and be devastated or too bad. Or I'm going to move forward and do this some way somehow. Did that decision happened for you? immediately. Did it take some time for you to continue to love science the way you did?

April Blackwell 4:01
It definitely took some time. And I guess I'll just touch on the fact that I think being diagnosed with diabetes at 11. Well, in the first place, there's no great time to be diagnosed with diabetes. But I think being diagnosed at 11, it sort of puts you on this really fast trajectory towards adulthood. Because you want to maintain your independence as much as you can. My parents implemented it, such that I had to be able to give myself shots and test my own blood sugar before I could spend the night at a friend's house, for instance. And so that was a big motivator for me. And I think, you know, maybe I always had a little bit of an inclination towards being a little older than what my physical age was. You can ask my mom I used to wake up early on Saturday mornings, to watch the news, not cartoons, just in the hopes that I might see you know, some information about NASA. But I think, you know, sort of that catalysts of putting me on a trajectory towards adulthood helped steer sort of my ideas about what I wanted to be in the future. And while I knew I could never be, or probably could never be an astronaut, space was so exciting to me and talking about rockets talking about, you know, low Earth orbit and traveling 17,500 miles an hour, five miles per second, thinking about these huge engines that need to take astronauts and supplies up to space, I just couldn't get it out of my blood out of my brain. And so I decided that even if I couldn't be an astronaut, I would love to work in the space program in some capacity. And that sort of led me to looking at an aerospace engineering degree.

Stacey Simms 5:54
All right, let's go back for a second about your parents in the transition at age 11. What was your diagnosis story like, were you very sick for very long? I mean, I know we kind of sometimes we talk about it like and then you you didn't have diabetes and then you did and then life went on. Can you kind of fill us in on on how you found out?

April Blackwell 6:13
Yeah. So it was, I guess nothing extremely remarkable about it, but maybe that's why I should tell it is because, you know, there is this sort of the normal warning signs that everyone comes up or comes up against. And so it was kind of in the Christmas time frame, December timeframe. I just got a cold. And then, you know, my grandparents were in town for the holidays, and we usually would stay up late playing cards, and you know, eating Christmas candy, and I just, I couldn't I just physically couldn't I was extremely fatigued. And then when I started getting up multiple times during the night to go to the bathroom, you know, my mom bless her heart, thought that I was probably suffering from a urinary tract infection. And her old wives tales, of course, told her that we needed to treat this with the cranberries.

Unknown Speaker 7:14
Of course,

April Blackwell 7:15
yeah, so. So we hit up the cranberry juice pretty hard for a little while, and it just wasn't getting better. And so we started going to the pediatricians office. And it took almost a week of daily pediatrician visits. I, I joke to that I could just pee on command, because every time I would show up there, they would tell me to, you know, get a urine sample. So it sort of became this joke. And then I was finally diagnosed on December 30. And they told us that we needed to head over to the children's hospital right away straight from the pediatrician’s office. We had no idea what diabetes was about at all. I absolutely had zero idea. I don't think my parents really understood it at all. They were just scared. And so we had we went over to the Children's Hospital, but unfortunately it was a sort of a skeleton crew because it was the holidays and New Year's and stuff. So they told us to just go home. And it turned out that my old pediatrician, he actually lived next door to us. And so he came over for a couple days to help give me some insulin shots and test my blood sugar. While we still had no idea what you know, was to come more shots every single day and blood sugar tests every single day. So it was definitely a steep learning curve as I think most diagnosis stories are.

Stacey Simms 8:41
Yeah, it can just take so much time to get the diagnosis. I get so frustrated by that. But you know, at least they got it before it was even more devastating. Fast forward a few more years, you have kept your interest in space as you said, What did you wind up studying in college or did you go you know what, where did your path lead you to continue after high school.
Right back to April answering that question in just a moment, but first, diabetes connections. is brought to you by real good foods. Have you tried them yet? high protein, low carb, grain free, gluten free. They have so many delicious products from breakfast sandwiches to pizza. The stuffed chicken is delicious, the little poppers that they make are just excellent. You know, it's really nice to have something convenient when you're not in the mood to cook or if you're a 15 year old boy, you know you're starving and you need something to get you between the half an hour before dinner. So Ben evil just get a little personal pizzas and heated up. We're really big fans of really good foods. I'm thrilled to have them back on the podcast for the new year. The new year and I'm excited to try some of the new products they have out right now. And I'm excited to try some of the new products they have out right now. We will be bringing you some taste tests as we go forward. But find out more and go to their store but find out more, go to diabetes dash connections dot com and click on the real good foods logo. now back to April talking about what happened after high school. Let's go now back to April and I'm asking her about what happened after high school How did she get to where she is now

April Blackwell 9:01
Yeah, so I was very fortunate to get a full ride scholarship in state in Arizona, and because of my grades, so I went to Arizona State University and studied aerospace engineering. And then once I got out, I kind of hit a little bit of a roadblock because there was a period of time in the aerospace industry that the space shuttle was looking at being retired. And so the the future of NASA was a little bit unclear as to what was going to happen. So a lot of companies and related industry sort of put put a hold on hiring right around that time. Which was unfortunate but it turned out to be a blessing in disguise because I ended up getting a job working with the army of all things in Huntsville, Alabama. So I moved across the country. Free to work in a triple wide trailer we like to call it in Huntsville, Alabama, which just sounds so glamorous.

Unknown Speaker 10:10
Oh yeah, the stars all end up there.

April Blackwell 10:14
But it turned out to be a really great experience. So

Stacey Simms 10:17
did I also see somewhere where you were testing helicopters?

April Blackwell 10:22
Yeah. So that's what I was doing for the army. And it was really awesome. It wasn't it wasn't quite space. But it was a really great way to get my feet wet on just what it means to be an engineer and what kind of engineering I personally like because there's so many different avenues you can go with that degree. So I got to fly on experimental helicopters and boss test pilots around which was really fun. The group I was in actually was really tight knit and it I'd say even more so than my group at NASA Now. And part of that, I think is because, you know, you had to fill out paperwork that said, who in your group would go tell your spouse or your significant other that there had been an accident. And so we really counted on each other to to watch out for each other. And all of them absolutely supported me with my diabetes. You know, my flight suit had specific pockets with snacks and blood testers and stuff. And so we always kind of joked, like, oh, if you need a snack, April always has one in her left lower leg pocket or whatever.

Stacey Simms 11:42
Let me just jump in and ask. So when I said you were flying helicopters, I was gonna ask you how the heck did you get clearance to do that as a person with diabetes, but it was as a passenger?

April Blackwell 11:53
Correct. Yeah. So I flew on them not actually physically flying them, but it did still require FAA medical clearance which took about six, six months to get all of the paperwork in and get clearance to finally fly on the helicopter.

Stacey Simms 12:10
so that's what I wanted to ask you about. Can you talk a little bit about doing this because it's it sounds so exciting and I know so many young people who want to serve in the military or want to fly and Yep, we've just got, you know, the, in the United States, FAA says now you can be a commercial pilot with type one. So progress there. But right, what do you need to do, you know, as we're going to talk about your path going forward, to kind of accomplish what you've done. You've mentioned medical screenings, things like that. You there's just a lot is there a lot of paperwork and exams? I

April Blackwell 12:44
Yes, I will tell you it's a little bit of a black box. Even now with the FAA ‘s new guidance. That type ones can apply for these waivers for class two and class one medicals. It's not clear to me how many type ones they've actually accepted into those medical clearance buckets. That data is never published. And, in fact, the process to get a medical for me, like I said, took about six months. And it was really me going to an FAA Doctor who said, Hey, I can't clear you because you have type one diabetes, I can check you for all the other stuff, but that's going to require some special paperwork. So he sent in his recommendation, of course, I had to get letters and agency readings from my endocrinologist.
Initially, the paperwork I started with about a year's worth of data. I sent that in and it took about three back and forth between me and basically a blackbox doctor in Washington DC at the FAA to finally get the amount of paperwork they wanted. And to be honest, I just got frustrated with The process and so I called my mom and dad back in Arizona, and I said, Hey, can you just run down to the Children's Hospital and literally make copies of every single piece of paperwork that they have, since my diagnosis? Back then it was all paper, not, you know, digital, it was literally copies of these pieces of paper, you know, probably a three inch thick, you know, stack of papers, and I literally sent that into the FAA and I said, this is all the data that I have from my diagnosis, you know, X number of years ago, and I have nothing else to give you, basically, and they finally said, Okay, okay, that's that's enough. And they granted me clearance for one year. But it was it was a frustrating process and I haven't tried to get another one.
You know, since moving to Houston because I do all of my medical clearance now through the NASA doctor so I can talk with them directly. There's an actual face to face, but the FAA doctors are a little bit of an enigma I guess.

Stacey Simms 15:06
So I guess the lesson there if a parent is listening or if an adult with type one is listening is be persistent.

April Blackwell 15:13
Yes. If it's something that you really want, you know, you're going to find a way to overcome it and do it. And I just, I just always say, never give up and be a rule questioner because there are a lot of rules that are based on old data and old diabetes technology and management techniques. So it's worth asking the question, because a lot of these doctors especially, you know, if you think military doctors and FAA doctors, they deal with really, almost perfect human specimens, if you will. And so they're just, they just don't have the knowledge of you know, what is going on in the diabetes sphere these days?

Stacey Simms 15:54
What an interesting thought, Yeah, why would they know because everybody is like GI Joe walking in.

Unknown Speaker 16:00
Yeah, exactly.

Stacey Simms 16:02
That's a really interesting thought. Okay, so you're, you're, you're in these experimental helicopters, you're following your career. You're in a triple wide in Huntsville. How’d you get to Mission Control?

April Blackwell 16:16
Yeah, it's a great question. Um, I will say just before I leave the helicopters for a minute there in Huntsville, you know, I had this opportunity to sort of push a lot of barriers that type one diabetics came up with against because the military doesn't allow type ones, you know, that were previously diagnosed at least right now. And so I got to go through the altitude chamber, the helicopter dunker trainer, which is basically two days of being drowned alive. And I went through the parachute course. And all of these required talking with doctors and just explaining the situation to them because they literally don't deal with type 1 diabetic patients, because that's a disqualification right off the bat. And all of them were super receptive, super open to it.
My military friends supported me going and talking to them and coming up with plans. So you know, we would come up with a plan, like we're going to leave your pump on till we get to this pressure, and then we're going to take it off and leave it outside of the altitude chamber, you know, and that's going to be 15 minutes. So make sure your blood sugar is at least 130 at that time, or whatever it is, you know, but it was a really great way to sort of break down those barriers. And I even included a two week course at the Naval Test Pilot School, in Pax river, Maryland. So that was a really kind of culmination of all these, you know, sort of barriers that I had overcome and a way to, you know, sort of solidify that I was on the right path.

Stacey Simms 17:54
That's fantastic. Wow. And that's great to have that support from the people around you. I love to hear that.

April Blackwell 18:00
Yeah, they were really great.

Stacey Simms 18:02
You get, you get dunked, that sounds so enjoyable. I mean, I know you and I, it sounds like we have very similar personalities and enjoy a lot of the same activities (laughs)

April Blackwell 18:11
Bananas.

Unknown Speaker 18:14
Tell me about what led you then to your position at NASA?

April Blackwell 18:17
Yeah. So from my my helicopter job, I was doing a lot of traveling around two weeks every month I was gone. And for a newly married person, it was just a little bit hard on the family so started looking for, you know, some other opportunities and found these jobs pop up in Mission Control. And I had absolutely no inkling that I would even get called to interview for them. But it turned into, you know, this flight test experience that I had, working on the helicopter as well. Well, it sounds completely different, actually was a lot of the same skill set that they look for in flight control. rollers. And so that sort of, you know, allowed that door to be open to get an interview at NASA. And of course, I ended up falling in love with it. I mean, it was job working at the home of manned spaceflight and now crude spaceflight with women, you know, joining in and getting to work in such a historic building like Mission Control. And you know, I'm even going there tonight I'm working this evening, that evening surf to fly the International Space Station. So it's, it's just really a dream come true.
YOUAREHERE
Stacey Simms 19:33
Okay. I have chills as you're talking about controlling the International Space Station. The the setup, I just want to take a moment because I think we all do know what Mission Control and flight control you know, what it looks like and what you do, but and correct me if I'm wrong here, but what we're talking about is what we see in all those movies. Right. When you know when they say Houston, we have a problem your Houston I mean, you were that big room, right? Yes. The diagram was all the guys in the white short sleeve t shirts and the glasses from the movies that we've seen all these years. That's Mission Control.

April Blackwell 20:07
Exactly a skinny tie and a pocket protector. We don't smoke anymore and missing control. Yeah, but if you get in the elevator it's in, it's in the same building so that the room for instance, if you've seen the movie, Apollo 13, the room that that movie was based on is actually just one floor up from our current International Space Station control room. And so when you get in the elevators, I always joke it's sort of this aroma of like 1960s cigarettes and coffee mixed together. But that's just the way missing control smells and it's, it's hard to describe.

Stacey Simms 20:47
Alright, so when you're going to work tonight, and you know, controlling the International Space Station, tell us what that really means. I mean, do you mind breaking it down a little bit? What are you going to be doing? I mean, in Yeah, I understand.

April Blackwell 21:00
Absolutely. It's not that hard. So basically, you know, we sit at a big console that has several computers, we monitor a lot of telemetry data coming down from the space station all the time. And it uses a satellite constellation to make sure that we can get our data even when they're on the other side of the world. So we look at that data, we make decisions based on that data. If we see any anomalies, we may send commands up to the vehicle. And then on certain days or nights, you know, there may be a big event like a docking or undocking, maybe a spacewalk.

And on those days, you know, it's our

job is even a little bit more critical because we'll be sending lots of commands and making sure that the space station is performing. Its absolute best to make sure we don't have any anomalies where maybe there's another vehicle really close by, so

Stacey Simms 22:00
Have you ever had an experience that was kind of frightening is the right word, but you know, where, where someone or or a mission was in jeopardy.

April Blackwell 22:13
Um, I've had a few

kind of small anomalies happen. I haven't been on console for anything very major. But that doesn't mean that major things haven't happened. This was, you know, hasn't lined up with my console shifts. But it's interesting because even when when stuff happens when you aren't on console, you sort of have this adrenaline because you know what that person sitting in the seat is feeling, you know, the whole lead up to being a flight controller. It's not like you're hired and the next day here on console, we call it almost a second master's degree. So you have about two years of training. About a year, a little over a year of that is sort of bookwork so you're learning a lot of information about that. The system we control, and you're taking oral examinations. And then the next piece of it is simulation. So we actually simulate, you know, really bad days, days that are worse than any any days, we've actually seen real time. And this is all to prepare you for that prioritization skill of being a flight controller and being able to work through stress. stressful situation. So we always joke that, you know, one small anomaly in the real room feels like 5050 anomalies, you know, in the simulation room, and that's just how we have to train ourselves to be able to cope with that stress. Wow.

Stacey Simms 23:44
What is the best part of it for you? Is it walking into that building? Is it knowing that you know that elevator is there and you're part of all that history? Is it just you know, logging in for the day I'm curious what you know what gets you still very excited about this? Because obviously You are?

April Blackwell 24:02
Yeah, so I'd say there's kind of two pieces of it, there's sort of a physical, almost just, you know, like chemical response, when you cross the threshold into Mission Control, you know, you have to swipe your badge like five times, you know, to get in the building, and then get in the room and all this stuff. So when you cross that threshold, it really is like, you're just leaving all your other problems and everything else that you've thought about that day, outside, because you need to focus. And you need to bring your best self, you know, in here, because there are literally at least six humans on board that are counting on you to take care of them and take care of their spaceship. And then as you sit down, we have what we call big boards and the friends so they're like these big projection screens and we're always getting video down from the space station, usually in about six channels. And we call it the windowless room with the best view because the view is just incredible. I mean We now have these HD cameras on board. And as you're flying my favorite place to fly over the sort of the Mediterranean Sea, and just the colors juxtapose there with like the desert sand and Africa, it's, it's just incredible. And without actually being an astronaut, I feel like it's close to being the next best thing. And then the second part is sort of what you were talking about the history, you know, in this in that very building just one floor up is where the controller sat when we landed on the moon. And they worked through problems real time, you know, to tell the astronauts what to do. And these were people that had computers with much less computing power than our iPhones today. And they were very young. If you look at any of the documentaries and everything, these were like 20 something kids fresh out of college, you know, space, there wasn't as much history then. So it's hard to you know, lead your whole life thinking you're going to be working in space. It's like something you just thrust upon you basically. And they were able to overcome all of that and be able to land man on the moon. It just, it still blows my mind today, even when I walk in that building. Wow,

Stacey Simms 26:17
that's amazing. So does Type One Diabetes on your job? Do you mind telling us a little bit about your routine? Because there's some very long shifts, lots of pressure, you know, you can't exactly take a lot of breaks, I would assume. Can you talk a little bit about how you manage it?

April Blackwell 26:32
Yeah. Um, so I mentioned before that we're constantly monitoring telemetry from the space station. And as type one diabetics, we're kind of used to that already. Actually, we constantly monitor telemetry coming from our own bodies. I use a CGM. So I set that in a prominent place. And it is just become part of my scan pattern. I scan all of the data that I'm looking at Looking for anomalies. And then I also glanced over at my CGM, and just make sure that I'm trending the way I want to be trending. And generally on console, I'll keep my blood sugar a little bit higher. So try to avoid going below about 120 or so just because I know if at any moment something could hit, basically. And so, you know, I don't want to have that rush of adrenaline drop me really low. So I try to keep it a little bit higher. I always have snacks in the control room, we're allowed to eat, you know, as you mentioned, they are long Fest, so you usually have a meal that you eat while you're there. And then all of the flight directors also know that I have type one, that's not a requirement or anything, but I think as a member of their team, it's important that they know that's something that I'm also monitoring and so it may require that I you know, step out for a quick two minutes to go grab a snack or, you know, do a little Check or change the site even I've had to do that at work. And so I think just being really candid and open and and, you know, open to answering any questions that they have is really important in sort of these high stress jobs like this.

Stacey Simms 28:19
And a while back, I interviewed Ernie Prato, who also works at NASA and also lives with type one. And I know you know each other.

Unknown Speaker 28:27
I don't, this is gonna sound so weird. So I just kind of a mom question. So I'm sorry for asking it. But like, do you guys see each other at work? Do you check in with each other? I mean, I know not everybody with type one. Diabetes has to be friends. But the mom and me is kind of hoping that you support each other.

April Blackwell 28:44
Yeah, so it's funny that you mentioned Ernie because

we sort of have this unofficial Johnson Space Center Type One Diabetes club and Ernie actually sits in Completely different building off site. He sits over at the airport now. So I don't see him daily, but we have sort of instant messaging capability and so will frequently talk on there. And we have another friend who actually works in the search and rescue area. So he's doing a lot of cool things with the military in order to get our astronauts safely home after they land. And so it's really fun we all meet and you know, you think we would like talk about space and stuff because that's what we do. But we always end up just talking about our diabetes and what devices were using which ones are you know, giving us trouble which ones were low on supplies for, if anyone's tried to like, you know, come up with engineer way to make something work better or whatever. So it's really fun to sort of have that outlet and especially at work with kind of like minded people.

Unknown Speaker 30:01
I'm glad I asked

Stacey Simms 30:05
what do you think would be next for you? Do you have other goals within what you're doing now? I mean, what you're doing now is so exciting. And I would assume you would want to do this forever. But are there other things that you would like to accomplish that you're working on?

April Blackwell 30:18
Oh, that's a loaded question.

There's so many things. Right now, I think my focus is just to you know, be the best engineer I can at work. And then I also have two little kids. So I

Unknown Speaker 30:33
yes, I want

April Blackwell 30:35
a three and a half and a one and a half year old. So they are taking a lot of my energy right now. And I think that's totally fine. That's, that's the season I'm in and so I want to be able to enjoy that. And so I think as far as my career goes, and everything, I definitely still have that astronaut dream out there. And I think there are opening up some new ways To be able to make that happen, and if not for me, then definitely the next generation of diabetics or maybe, you know, if we come up with a cure, then the non diabetics. But I'm really excited to see where that goes. And then I, I think, also just kind of spreading this message that you know, even if you perceive that there's a something that could hold you back as a type one diabetic, make sure that you are asking questions because it may not always be a hard know, and you sort of need to figure out what it is that is really keeping you from doing those things.

Stacey Simms 31:36
I don't want to get too personal, but I know a lot of listeners will be interested. You know, when you have type one. There are a lot of concerns about having children. I mean, less so today, but you have to do so much work, it seems to me, you know, was it? Gosh, you seem like such a disciplined person anyway. And again, I don't want to pry but healthy pregnancies you did okay. You said you had a CGM. Do you mind sharing a little bit about that? Yeah,

April Blackwell 32:01
um, so I actually don't get this question very often, I think because everyone's so focused on the NASA and space scope, but I'm really happy to share it because I think it is important. It's not something that a lot of women talk about.

So, yes, I had two kids, three and a half and a one and a half, one and a half year old now. The first was a girl and everything went really, really well.

I was induced, and that was sort of just my ob was being a little cautious with having diabetes and making sure I didn't go too long. And so I was induced, which turned into like a 40 plus hour labor, which was unfortunate. But everything turned out just fine. And she has a lot of attitude now. So something worked there. My son, so he's just about 18 months now, a little bit different flavor of pregnancy. As weird as that sounds. He had a lot of fluid around him while I was pregnant. So I gained a lot more weight. And I was just generally uncomfortable because I felt like my stomach was literally just gonna like burst open, it was so, so stretched out. And he ended up being a C section baby and he was over nine pounds. And that was again early induced about 38 weeks, so to completely different pregnancies. I had good control through both and you know, all of the non stress tested all of that when we're going well, and it just turned into a little bit of a different labor situation with my son so but I have two awesome Healthy Kids now and they do take a lot of my energy It's interesting because you know, my daughter being three and a half, she understands I have these sort of extra devices hooked to me. Console, she, she knows the word diabetes, she knows the word pump, she knows that sometimes I eat her applesauce pouch when I'm low and we're at the playground. Because that has happened before. Sure. And my son is still you know, he's just, he isn't quite to the point of communicating those feelings yet. So he'll touch my site, and I'll tell him No, you know, but it's just interesting seeing how they react to it. And I think in a way it will hopefully make them more empathetic to you know, friends or people in the future that they come across and this is just a normal part of life. And you know, everyone has something they're dealing with, I think, you know, Type One Diabetes happens to be mine, but everyone has something and so keeping an open mind and judging people based on devices or things that they see right off the bat I think is really important.

Stacey Simms 35:07
Do you mind if I ask what devices you use? But pumping CGM?

April Blackwell 35:11
Sure I use the tandem.

x to polymer and sex sex. com g sex ctm. So I get that data right on the pump, which was really nice.

Yeah, I like both of them's though. I'm a big fan. Before

Stacey Simms 35:30
I let you go, you know, this is kind of a tough question for you to answer. But your mom and dad, you were 11 when you were diagnosed, you shared this love of space and science with your father. Your you have an incredible career. You have two children, they must have been worried during the pregnancy. You know, have you had a conversation with them about Wow, did you ever think after that diagnosis where I would be today?

April Blackwell 35:55
Oh man, we've had a lot of conversation about this.

Yeah, it's it's very cyclical. I think for us, you know, when I was growing up, I would definitely have months where I was not literally diabetes high, but just high on life and really excited and full of energy. And then I definitely had points where I was really low and upset that I had diabetes. You know, the one person that I knew that really wanted to be an astronaut, and literally couldn't because of this disease, you know, somehow I was chosen to have this disease, of course. So I went through all those emotions and those feelings and my parents were always there. They always supported my dream. And they really stressed to me the importance of working hard. And I will tell you, engineering is hard work. And it is hard to get through engineering school, even if you're really passionate about it. And so that support was priceless. I know my mom, you know, see Susan emotional person. And I think she was sometimes afraid that I wouldn't be able to sort of realize some of these dreams. And it's so great. Now, you know, I'm in my early 30s and I have my dream job. And I send her picture hers, you know, for Mission Control probably every week, just because I think it's really cool. And, you know, seeing her and the being able to decipher that, hey, like, we made it together. It's not it's not just me. I mean, they did so much to help me and my poor Mom, you know, she's, she's not the most most into space, but she like dragged herself to those space museums that me and my dad wanted to go to Oh, man. Sometimes she would be doing her crocheting over in the corner. So bless her heart. She was such a trooper. through all of that, but I think it's really important now to, for her to see, you know, these moments in my life. And now she gets to share those with other people that she meets that, you know, maybe they've just had a diagnosis like this, or they know someone going through an issue that's, you know, putting up some barriers and she can say like, hey, look like we got through it. It's totally doable. I think that's the key, it's doable, and it's going to be tough. But if you want something, you need to just go for it, and it'll absolutely work out. So we've just sort of on and off had those conversations, you know, let's see, I've had diabetes for 20 years now. So the last 20 years, I would say there's been conversations like that

throughout the whole time. Wow.

Stacey Simms 38:48
Well, that that's great. I'm so glad that you've had this conversation with your parents, you know, as a as a mom have a son who is figuring out what he wants to do, you know, and we don't want diabetes to hold him back. Don't mind saying I find your story incredibly inspirational. So April, thank you so much for joining me. And, you know, I'll be following you on Instagram and elsewhere and looking for those pictures of Mission Control and everything. Thanks for joining me

April Blackwell 39:13
absolutely anytime.
Stacey Simms
so much more about April at diabetes dash connections come and I'm going to talk about her had a really emotional reaction to something. I'll share that in just a moment but first…
Diabetes Connections is brought to you by Dexcom. And you know when you have a toddler diagnosed with type one like we did, you hear rumblings for a long time about the team years, but when it hit us at full force a little early, I was so glad we had Dexcom early. I was so glad we had Dexcom Benny's insulin needs started going way up around age 11. And frankly, they continue to go up and told, I think they started topping out about age 14 really just late last year. And you know, those hormones, swings, everything we had to do all the adjustments we've made. I cannot imagine managing diabetes during this crazy time. Without the Dexcom continuous glucose monitoring system. We can react more quickly to highs and lows, see trends adjust insulin doses with advice from our endo. I know using the Dexcom g six has really helped improve Benny's A1C and overall health. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more just go to diabetes dash connections calm and click on the Dexcom logo
before I move on from April Blackwell, in her terrific story, I just want to share one more thing. So when I, when I talked to all the guests, I always grab pictures of them, right? You see that on social media, when we put the episodes out or at the episode homepage, there's usually a picture of a product or the person or you know, the crux of what we're talking about. And often they email me photos, but sometimes I scroll through just to kind of see which one I'd want. Then I can say, Hey, can I grab that one picture or whatever. So I was doing that with April. And I came across, and I'll see if I can get her permission to share this in the Facebook group. She has a picture of herself dressed as an astronaut. And that picture is from about and that picture is from, you know, she was diagnosed, she was diagnosed at the end of December. So it's Halloween. I mean, it's just really a couple of weeks before she was diagnosed and seeing her as a little girl, knowing what she wanted to do, and knowing where she is now. And just I guess I could have been sad about it because I got very emotional. And I guess the reaction could have been, oh, it's too bad that you didn't get to be that astronaut but my reaction Was this? I mean, I really got emotional, it's kind of embarrassing. Was this, this swell of admiration, I'm not sure I'd be that strong, whether I was 11 years old or, you know, an adult, to be able to turn that situation into what she has been able to do with it. You know, and as she mentioned with Ernie Prado, who also works at NASA, and you don't have to be a you know, an aerospace engineer, to just kind of overcome what type one throws at you. And I think that's what happened when I saw that photo. I just thought, gosh, you're all of you.. All of you just have to be strong. You know, even if you don't feel strong, you kind of have to be you kind of have to be and yes, parents too, but it's a different kind of strong for us, right. That's a that's a different story altogether. So I'll see if April will let me post the photo and I wonder if you'll have the same reaction that I did. Foot boy What a great story and I can't wait to follow along with her. It's nerdy April I'll link it up in the show notes on her Instagram account

on her Instagram account
all right time for Tell me something good brought to you by our friends at real good foods. And this one is real good foods. And I know it's a podcast and I shouldn't be saying things like you got to see the picture. But you got to see the picture. And I will post it in the Facebook group. I will be posting it later this week on Instagram as we start posting the Tell me something good stuff. But Amanda lovely. posted a photo of her kids celebrating what they call their last Lantus party. And she says the reason they were having a party, Annika, who is her daughter with type one is 10. It burns right Lantus burns a lot of people if you're not familiar, this is a long acting insulin. This is a commonly used long acting insulin. And Amanda said that Anika isn't a fan. This was a big moment. The picture shows as they're having their last Lantus party, Anika with two of her siblings in party hats. party hats, so it's Nina and chi and they are hugging her and everybody looks like they're having a It looks like a birthday party. I mean, it's really cute. And apparently Malin, who is five but not in the photo was also wearing a party hat. party hat and the dog was as well but not pictured Amanda, you got to send us a picture of the dog. But they were really excited and supporting their sister, which is why this is the Tell me something good. Not so much about the pump start although I'm sure she appreciated that and that's fun too. But, too, but it's always just so nice to see a family kind of get behind each other, right? I mean, gotta have that kind of support.
And I will say that if Lantus burns, you or your child know that there are long acting alternatives, not just switching to an insulin pump. And by the way, Amanda make sure you save some of that long acting just in case you have pump issues, right? You know, you never want to have no long acting on hand, just in case talk to your endo. But if you're having an issue with Lantus, ask about switching, there are other long acting's out there that don't burn as much and that work differently, but that's definitely an endo level decision. Do you have a Tell me something good story. It can be anything from a diversity a milestone of a last Lantus party. We have lots of fun stuff to share. And I love telling your good stories. You can always email me Stacey at diabetes dash connections. com or post in the Facebook group message me, you know, send a carrier pigeon, whatever works for you. We will be sharing these pretty far and wide this year. And I'd love to hear your story.
With the time shifting nature of podcasting, as I've mentioned before, you know, sometimes and recording before things are happening that I want to talk about, and then they'll the show airs afterwards. And all of that to say, a lot of you've been following along with Benny, who has been on crutches for six weeks. And as I am taping this, he is hopefully getting the word in the next couple of days that he can be off crutches, and maybe start some physical therapy. So next week, I hope to tell you a little bit more about that. And we're also going to the endo, which is a really good time for me to interview Benny because we're alone in the car and we're in the same space for once because that kid is so busy, I don't even see him half the time. But I'm going to try to talk to him about control IQ in the last year and lots of things changes he's made. Control IQ and things that have gone on since we've last talked we've made some other changes. And you know, he's just a different kid than he was even a year ago which is kind of breaking my heart and kind of fantastic but Boy, it's been it's been a big year for him. I don't know about you. But when my kids went from middle school to high school, it wasn't it wasn't just a different school. It was like a different life. High School is very different. The schedule is different. The work is different. And I remember with my daughter, who is now a freshman in college, and as you're listening is going back to school next week to do her second semester there. It just flies by it goes by so quickly. So I'm trying to hang on for dear life. And hopefully Benny will will talk to me talk to you, and we'll get him on the show as well. Tons of events coming up. I'm not even going to run down the list. I will ask you though, to go to the community page at diabetes dash connections calm. You can see where we've been where we're going. I've got a kind of a de facto book tour, because I am the world's worst diabetes mom, which is taking me on the road right now but two events a month. You can see them on the community page and see if I'm coming to your town. And if not, and you'd like me to come speak or tape a podcast or whatever. Just let me know.

Just let me know. Next week, just let me know. Alright, later this week we have our second minisode. This one's going to be all about sleep overs. What worked for us, I had some questions about that. And I'm answering them. So we're gonna be talking about sleep overs. That episode will air on Thursday, January 9, and then our next regular interview episode will be next Tuesday. Thank you, Tuesday. It's gonna take me a little time to fall into the rhythm of this, but I think it's gonna be a lot of fun. Let me know what you think. As always, the show is here for you. Thanks, as always, to my editor, John Bukenas from audio editing solutions, and thank you so much for listening. I'm Stacey Simms, and I'll see you back here on Thursday.

Transcribed by otter.ai

Jan 2, 2020

Do you share your CGM graphs and A1Cs online? Why?

Stacey talks about the trend of sharing everything on social media and wonders if what she learned in her radio career might help us all make sense of when and how to better share.

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

In 2020 we're adding these mini-episodes to the weekly line up. Each Tuesday you'll hear the regular longer format interview shows. Thursdays will be these Stacey-solo shows.

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Show transcript (rough copy so please excuse spelling, grammar, punctuation)

Stacey Simms  0:00

This episode of diabetes Connections is brought to you by the World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type One Diabetes, available as a paperback eBook and audiobook. Learn more at diabetes dash connections.com

 

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms

Welcome to something new on diabetes connections. I'm your host, Stacey Simms. And this is a mini sode, a very short mini episode. I'm going to be doing these in the new year. Just me sharing some thoughts, advice and experience. Please keep in mind, everything I'm talking about here is only through my personal experience as a parent of a child with Type One Diabetes. I am not a medical professional. And I am the author of the world's worst diabetes mom. So keep that in mind as well. One of the questions I get All the time is why don't I share Benny's numbers? Why don't I share my son's A1Cs? Why don't I post more graphs? I do occasionally show some CGM action, you know when I'm trying to prove a point or talk about stuff. But why don't I do that more regularly and especially the A1C numbers? Well, I really did share them for a long time.

Benny, he was diagnosed right before he turned two and social media wasn't as big a thing in 2006 when he was diagnosed, but a couple years later, it was and I shared them on Twitter and Facebook until he was about seven, I'd say. And then I became friends with Moira McCarthy, who is a very well known author, blogger. She helps me out on diabetes connections as my co host of the Ask the D mom episodes, and she asked me to think about why I was doing that. And it really did did took me back. I took a step back on that. And after I thought about it for a while, I did stop sharing them. And here's what really helped me. It's one way of looking at it. That might sound funny. Radio really helped me make more sense of how I felt about diabetes numbers. If you're not familiar, I worked in radio for a very long time I started my career while I was in college, at a radio station. I worked at WSYR, I was the weekend reporter in Syracuse, New York for the old news station there. And then after college, I was a local TV anchor and reporter for many years, moved to Charlotte, North Carolina, where I live now in that capacity. I work for the CBS affiliate as a TV reporter and anchor for a couple of years. But I went back to radio for a decade and I did mornings at WBT, one of these big heritage radio stations.

So my old Program Director, Bill White, used to caution us against putting too much stock into the ratings. You know, you get these Nielsen ratings, at least you used to in radio, and I want to say you got them every quarter. And these were the ratings that would give us I mean, not just bragging rights, which was a lot of fun to say, you know, we're number one in the market or you know, we're number two or whatever. It was, but they would also set the commercial rates, right how much the sales people could charge for a commercial at any given time on the radio station. Now, it changed a lot in the time that I was in radio, because the ratings systems switched from Nielsen ratings, which were you were writing down what you listen to, I don't know if you ever had one of these Nielsen books, but that's what it was, you would get a physical book. Remember those pen paper like a workbook, and you should write down what you listen to. That's why so many radio stations repeat their call letters a billion times, or at least they did back then. Because they wanted you to remember the call letters when you got your little Nielsen book. So if you're listen to radio station, they're always like news, weather, traffic, you're listening to news talk 1110 WBT, you know, why did we say it a million times an hour, we needed it to stick in your head so you would write it down. But then, really just a couple of years before I left radio, the portable people meter, the ppm system took over and changed everything.

So ppm, if you're not familiar, is a system that was developed, I want to say by Arbitron, but now part of Nielsen. So it's like a pager almost, and you wear it. And it detects hidden audio tones, I kid you not within the audio stream, so it logs every time it finds a signal. So a ppm basically picks up when you're listening. And when it came through, there was a lot of talk about is it accurate? Is it biased to younger people who are going to walk around with this thing as opposed to older listeners who can't be bothered, you know, will it pick up stuff in gas station stores that play music or restaurants you know, blah, blah, blah, doesn't matter that ship has sailed. The ppm is now how radio stations get their ratings and it changed everything which is a story for a different time. But I will say if your your local fun morning show is talking less than playing music more, or you're hearing some changes, really you would have heard these almost 10 years ago now and the way you listen to radio Do it was because of ppm and you know now it's debatable whether radio podcasts streaming, that's a whole other story. But so ppm for us really changed the numbers.

Our radio station WBT never really sold on those numbers strictly though, because we had a very desirable audience. We had an older audience, our audience had more money, they were more loyal. They were really apt to buy what we were selling. So we did not have to live and die by the ratings, thankfully, and that is what Bill warned us against my program director. If we got so caught up and excited about the really, really good ratings, would we be devastated by the bad, right where we doing a good show where we serving our listeners, my co host, used to say, super serving our listeners, you know, where we doing all we could for our clients, you know, we were doing all this at 5am where we're doing everything we could do, and that's what we were supposed to focus on. Bill's point was Don't let the numbers run your life. Life and a new station. This is really important. Think about when you might listen to your local news station, you might listen when there's a power failure and you need that radio, you might listen when there's a huge news story, you might just listen occasionally. I mean, in the olden days, you'd listen for school closings before the internet. So we'd get these, these spikes that were very attributable to events, right. And then we would get these lows, that maybe were also attributable to events. But if you got emotionally caught up and thought, oh, all these people are listening, because I'm so great. Then you could also get emotionally messed up when you're thinking they're all tuning out because of me. So you can't put the numbers before what you're supposed to be accomplishing. As a news broadcaster. We were there to inform, to entertain a bit sure, but to inform. And I think Bill's advice is really applicable to diabetes.

Look, of course, numbers are important. Of course, we need to pay attention to them, but We can't run our lives around them, we can't let them have the emotional power that many seem to want to give them. I mean, I've been guilty of this too. But you have to step back and recognize they are information, they are guidelines, they are not your value. If your self worth is coming from your child's or your A1C,  I'd really encourage you as Moira did to me years ago, step back and think about that, think about why. And then I would encourage you to try to move that good feeling off of those numbers and onto other ways that you're dealing with diabetes. I mean, for very young children. I mean, that can be such a roller coaster. The victories for me, were the smiles with grandparents, you know, bedtime snuggles, milestones like potty training, you know, even when your your little kid learns to share, right? These are all ways of celebrating and as your kids get older, participating in sports or in the school play, getting their drugs permit Ben he just got his somebody come hold my hand. Oh my god. But these are things to celebrate first date, right? Oh my gosh, these are ways to celebrate with diabetes that aren't about the numbers.

Just thinking back right? What stands out if you have older kids, or if you're an adult with type one, what stands out for you? Do you remember that excellent doctor's appointment? Or do you remember feeling really good and doing something that you loved? Because you have to be in range have to be taken care of yourself to be feeling good at these times is all is my point. But you're not focusing on the actual number right? If you're calling your endo appointment, mommy's report card, I am talking to you. Because what happens is, so many people share only the so called good numbers, right? But they don't want to share the so called bad ones. Because if you have publicly celebrated, let's just say a 6.5 A1C you may feel really bad about 7.8 or higher? I mean, let's be real here.

And something else to keep in mind. And maybe the most important thing is that for parents, you're making these choices for your kids. You're putting their health information online, you're putting it out there adults, this is different for you. I mean, these are your choices. But parents, you're making a decision for your kids and you're really not getting their okay. And I don't think a seven year old can really decide if it's okay, right. Remember, if you're in a private Facebook group, nothing online is private, nothing you're sharing online once you hit send, or put it out there. Nothing online is private. And that's really the biggest reason why I stopped sharing Benny's A1C. I decided there was no reason for me to leave a breadcrumb trail of health information on the internet for someone and employer and insurer, anybody to find when he was an adult, I don't care how good his numbers have been. And trust me they're far from perfect. Sometimes they're No need to share that.

One more thing. There is a school of thought that you don't even need to tell younger children what their A1C is. And I wish I had done that. I mean, I don't really think Benny ever knew until he was out of elementary school. But a lot of endocrinologists are now writing it down and showing the parents if you're in the room together, or maybe emailing it to you later through a health portal, which is protected by HIPAA in a way that Facebook obviously is not. And I think that's great, because you can easily find ways to celebrate or mark time with your kids or, you know, hey, we're at the endo and that's always a reason why we do. We go to a movie, we go shopping, we do a special high five, whatever works for you. But you're not celebrating the number per se.

And back to Benny for a moment. Here's how I know he didn't know what his A1C was when he was little. He had a nurse asked him once he was a camp so he was in a not normal setting. And the kids were eating ice cream and I don't know why the nurse was involved. Maybe they were doing it at the health center. Who knows But he asked for his ice cream. And she said, Oh, I don't know. Should you be eating this? What's your A1C?  He was about eight, maybe nine. And he said, I don't know. He turned around and found another nurse and said, Can I have the ice cream? She was like, yeah, sure, Benny, no problem. And, you know, he told me that story when he came home from Camp, but I was kind of glad he didn't know. And I was really glad that he was smart enough to find somebody to give him the darn ice cream.

I am not trying to be a killjoy here. You know, we all have what works for us. But I urge you try this. You may find it incredibly freeing not to share your numbers not to share your child's numbers. Come on, you are all so much more than the A1C or the last 24 hours on a graph. Right? You're not raising a number. You're raising a child. I hope this gives you something to think about.

Agree. disagree. Remember, I am the World's Worst Diabetes mom. And the book is available on Amazon paperback eBook and audio book and it's available at diabetes dash connections. com where you can always find out more. I hope you come back for our regular full length episodes. Every Tuesday, we feature interviews with newsmakers, athletes, artists, celebrities, authors, speakers, and everyday people, quote unquote just living with Type One Diabetes. I’ve been doing the podcast for four and a half years now, and I really hope you find episodes that you love.

I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  12:34

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

 

Transcribed by Otter.ai

Dec 17, 2019

With holiday travel gearing up, we decided to check in with someone who travels the world. Jason Viglione is always on a plane, train or car for business and has figured out his own best practices for pump, CGM and the whole routine

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

Jason was diagnosed just last year.. his anniversary date is coming up in January. Like a lot of adults, he had trouble getting the right diagnosis. We’ll hear that story and a lot more..

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In TMSG – a cameo in a Hallmark Christmas movie.. a diaversary celebrated in a big way.. and a little independence for a tween with T1D that's worth celebrating!

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

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Nov 5, 2019

With Veteran's Day later this month.. we’re talking about T1D in the military. Yes, you can serve with type 1 diabetes, but there’s a catch. You have to be diagnosed while you’re already enlisted. That’s what happened to Sergeant Major Mark Thompson.

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Mark shares his story and has advice for young people with diabetes who want to enlist and find that they aren’t allowed.

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In Tell Me Something Good, a study at Ft Bragg that is changing the military’s perception of type 1 diabetes.. and how a canoe trip through the Canadian wilderness changed one family’s perception of life with diabetes.

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

More info about diabetes in the military

Learn about Caroline Marshall: FBI Special Agent with T1D 

 

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Sep 3, 2019

Krishna Kaliannan is the founder of Catalina Crunch, a low carb cereal company. But that wasn’t the path he thought he’d take when he was diagnosed with type 1 in high school. In fact, he was so angry about the diagnosis that for a while, he considered ignoring the whole thing:

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Krishna made his peace – he tells us how – and he wound up creating a line of low-carb crunchy cereals. He also lives with epilepsy.. and shares that story as well.

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In our Community Connection: Sugar Surfing for your doctor, a new resource from Dr. Stephen Ponder.

And in TMSG a T1D teen takes a prize at an invention convention. Congratulations to Morgan LaRochelle! Learn more about her story here. 

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

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Aug 29, 2019

This week, Stacey moderates a frank conversation about women’s issues and type 1 diabetes. This episode contains the full panel.

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You'll hear about everything from periods to menopause to appearance issues with diabetes gear. The panel includes Elizabeth Forrest, the founder of Touched by Type 1, the conference where this panel took place, lawyer Risa Katz and Nicole Johnson, who is with JDRF now and was Miss America in 1999.  All the women live with type 1 diabetes.

This is the full panel - an excerpt ran in the episode immediately preceding this one.

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Aug 13, 2019

Ask The D-Moms is back. This time around we’re answering your questions about the “right” ages for diabetes development, wearing extra gear for DIY systems and a discussing about extra praise for diabetes routine stuff.

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Join Moira McCarthy and Stacey as they answer listener questions and share their own experience raising children with type 1 diabetes.

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In our Community Connection segment, find out about the I Hear You campaign.

In Tell Me Something Good, Stacey share listener milestones and gives and update on Project 50 in 50

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00:00 What's on this show this week?

1:35 Stacey Welcome: more about Benny at "regular" camp, Stacey talks about the Myabetic Diabetes Awards (vote here) and more.

7:45 Ask the D-Moms

43:00 Community Connection: The "I Hear You" campaign

47:30 Tell Me Something Good!

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