In-depth with a teenager who lives with type 1.  Stacey interviews her son Benny, who was diagnosed just before he turned two. They talk about Control IQ, explaining what diabetes is to people who don't know and what he does these days for sports and other activities.

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

Benny answers listener questions and looks back on 13 years of T1D.

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Episode transcription: 

Stacey Simms  0:00

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

 

Announcer  0:20

This is Diabetes Connections with Stacey Simms

 

Stacey Simms  0:26

this week in depth with a teenager who lives with type one, okay, it's my son Benny. We covered a lot of ground here answering your questions including sports, what he tell his teammates when they travel for sports and stay overnight.

 

Benny  0:41

I tell them that nasal spray thing - Baqsimi if I don't wake up or if I pass out, do that and then go get coach.

 

Stacey Simms  0:47

We talked about feeling self conscious about diabetes gear, what he remembers about being a little kid with type one and his feelings about the new Control IQ system. I think this interview was a good idea?

Tell me something good graduation news two popular diabetes books get updates and more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of Diabetes Connections. I am so glad to have you along we aim to educate and inspire about type 1 diabetes by sharing stories of connection. If you are new Welcome, my name is Stacey Simms. I am your host, my son Benny, who you will hear this week was diagnosed right before he turned two. He is now 15. My husband lives with type two diabetes. I don't have diabetes at all. But I have a background in broadcasting and local radio and television and that is how you get the podcast.

Before we get to Benny and oh my goodness. Like I've already said I'm hoping this was a good idea. I think he has good information to share. It's a little odd to interview your own son. But before we get to him, I have some great news of my own to share the world. First diabetes mom, my book that's been out for a couple of weeks now won an award, my publisher sent me an email. And by now I've probably shared it over social media, as you're listening to this spark publications announces that the world's worst diabetes mom has won an award of distinction as part of the 2020 communicator awards. This is part of the Academy of Interactive and visual arts. I'm really excited about this.

Of course, it's not just about the writing, but about the design of the book. And we work really carefully on that the cover alone, we went back and forth quite a bit, but then inside to make it really easy to read. And a nice experience. I mean, oh, my goodness, I was who knew so much went into things like this. I mean, when you think about it for more than a minute you get it. But Wow. If you've ever been involved in any kind of book publishing, there's a lot of steps to it. So it's very exciting to see all of our hard work rewarded with this award. So thanks for indulging me and letting me talk about it a little bit. The book has really been an incredible excuse. For me, and I hope if you've read it, you've enjoyed it. I hope if you haven't read it, you'll consider giving it a chance. You can always learn more, of course at the website Diabetes connections.com. But the book is for sale on Amazon paperback ebook, you know, Kindle and audiobook which I married.

And if you're listening to this episode as it first airs on Tuesday, the 26th of May, then tomorrow night I'm actually doing a world worse diabetes mom event with jdrf a couple of the southeast chapters got together we're doing a zoom presentation all about it, sharing our mistakes and mishaps what we learned from them and why they're just the best way to go right? You got to make all the mistakes when it comes to diabetes or parenting in general. And I'll put more information about that in the Facebook group and on social media. I'd love to have you join us.

All right, my conversation with Benny in just a moment but first Diabetes Connections is brought to you by One Drop.  Getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance about what they say you need and what you really need. Make it easy With One Drop, they offer personalized test strip plans plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about not that surprising when you learn that the founder of One Drop leaves with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more, go to Diabetes- connections.com and click on the One Drop logo.

 

My guest this week was pretty easy to book because I know his schedule. He lives in my house. He is my 15 year old son. And if you've listened to the show for a long time, you know I really try to balance how much I share about Benny's experience with type one. It's a balance of, you know not oversharing to compromise his privacy, but also sharing them To help people, he's always been a really good sport about it. And we've really weighed and measured over his entire life because he was diagnosed at 23 months, how much to talk about him. I mean, even really before that, because I was on the radio when he was born. I mean, both of my kids, I was a local TV reporter when I was pregnant with Lea, my daughter, and I was in radio, I was at WBT where I worked for a decade doing the morning show there. I think I was there for a year before I got pregnant with Benny. And so my listeners went through that process with me. You know, they saw me out at events and it was a whole big deal about, you know, how much are we going to talk about how much are we going to share, and when he was diagnosed with type one, and my listeners wanted to learn more, we had to go through it all over again.

So I err on the side of sharing less, which may strike you as bananas because I just talked to my book where we talk about all our stories and our family stuff. But I really do I mean, if you look at a lot of the mom bloggers out there, and especially the Instagram people, you know, I really don't share our day to day. I don't think that's fair to him. I'm saying all this I'm sorry for the big lead up. Because it's hard for me to interview Benny, it's hard for me to kind of push and probe for more. He's funny, as always, he gives great information, I think, of course, he is 15 years old.

A couple of quick notes to that. 15 years old, and really goofing around on the microphone. There's probably more editing than usual in this episode. So please forgive us if parts of it sound a little choppy, although I'm sure my editor john, you can smooth most of that out. But really, there were times where I really I just, we were goofing around so much, I had to cut it out. And there's a little bit at the end to give you a taste of that. And I mean, the very end of the show, I included it's not really a blooper, but it's just oh my god, what he was doing with the microphone.

Also, he does say this is the only correction I'll make. We talked about Control IQ and he says he's in range 80% of the time. I wish. It's still excellent. It's closer to 70% of the time, which is wonderful and it's certainly a lot less work. We talk about that a little bit too. But I have to correct that he is not in range 80% of the time. And the only other thing is listening back to this. I don't want anybody to misunderstand. We are mean to each other. I mean, I call him a couple of mean names. It's just our relationship. I mean, it's kind of the way we pick on each other. If you don't know us, too well, I'm just a little worried that you might think we're really mean to each other. I think you can hear that. It's all in good fun. We are so fortunate to have a great relationship. But it's been a while since I had him on the show. And you all had a bunch of questions for him. So I asked, he answered. Here's my conversation with Benny.

Stacey

So how are you holding up? I'm good. All right. Well, we got lots of questions for you. From listeners and the Facebook group, you started on Control IQ at the end of January. And we were well past three months now. Use any perspective Any comments? What do you think Vinnie? You'd

 

Benny  7:55

No, it's much better than it was before cuz I'm in range. Like 80% of the day?

 

Unknown Speaker  8:02

Yeah, it's wild. What have you noticed in terms of me?

 

Benny  8:06

I'm curious if you're much more now you like, Is it working? Is it working? Is it working? No, I'm not.

 

Stacey Simms  8:15

Any tips or tricks? You don't bolus when you're on the higher side, right? Because we found that that kind of

 

Benny  8:21

plummets you. Yeah. Don't do to see but in Control IQ, it won't bring you up from lows.

 

Stacey Simms  8:27

But you still do to receive and Control IQ

 

Benny  8:29

because I like juice.

 

Stacey Simms  8:31

Cuz you like juice? Yeah. You're an idiot. What?

 

Alright, so you use Control IQ, and you still take a daily shot after Seba, even though your insulin needs have gone way down. Why do you continue doing that your Seba?

 

Benny  8:47

I don't know.

 

Stacey Simms  8:48

Well, you know your mother mentioned you might want to stop and you said no, I thought you had a reason less insulin usage. You mean like in the pump, you don't use the cartridge. You should try it. You're not really using balance. Well, now we have to talk to the endo again and okay. Would you think of the telehealth visit that we did by the way? That was rough.

 

Benny  9:08

It was rough about it. You guys couldn't find any. Oh, yeah, we had probably his first one.

 

Stacey Simms  9:14

And he didn't have clarity and he didn't have to connect up even though the office said that they did. So it was a little weird, but were you okay with just talking to him that way? Well, yeah, I mean,

 

Benny  9:22

it's better in person. Because that our interests are pretty cool guy. Let's get to the questions

 

Stacey Simms  9:29

in the Facebook group, Rodney Miller. Hi, Rodney, who runs bolus and barbells he said Why am I Benny's favorite? strong man diabetic.

 

Benny  9:38

My favorite strong man diabetic actually for your information? Cuz I'm the best Oh, you're those favorite strong man. Oh, all right. Well, we'll see you guys in competition. Maybe I can guide when armwrestling contest. I don't know man. my biceps are massive friends for

 

Stacey Simms  9:52

life. 2021 showdown. Rod me and Betty. Okay. Ronnie says does he feel does Betty feel like having Such a strong advocate for a mom has provided him unique opportunities to connect to the diabetic community.

 

Benny  10:06

Yes, would have never met Rodney. Ernie almost got the chance to meet the rock was very close to that. Brick bassinger those people are pretty cool friends for life is a lot of fun. Justin Thomas, Jeffrey, those guys are pretty cool, too. I don't think I would have really met them without mom. You know, no one's putting us in trials. So you know, is that

 

Stacey Simms  10:30

isn't that funny that we can't get you into a clinical trial?

 

Benny  10:33

I think they it's obvious that they know we're just too cool. They don't they don't want to risk something not working on people that are just so awesome.

 

Stacey Simms  10:41

But we'll keep trying. All right. Shelby wanted to know, when you were younger, what did you say when other kids asked about your pump or CGM? How did you handle the curiosity of other kids

 

Benny  10:52

said I'm a robot. I still say I'm a robot and then I actually explained it. I remember one time a gorgeous went What's this and ripped up my pump? Wow, that was Fine. I don't really remember anything. Besides that.

 

Stacey Simms  11:02

I remember when you were, and this might be the same story when you were in preschool. They told me that you were all kind of like lining up to go to the bathroom or something. And the kid behind you said, Hey, what's that and started to pull on it, and you turned around, and you were like, three? And you're like, that's my diabetes. And you were very straightforward. Like, don't mess around with that. Don't touch that. That's mine. Or I guess, like, touch my diabetes. You're like, but you were always we're very lucky because you were always very straightforward about it very open about it. And you never have seemed to minded

 

Benny  11:36

Well, yeah, no, I don't care. Like if you don't like me, because I have diabetes go away. You suck by God, what am I gonna say? Like, Oh, no, darn.

 

Stacey Simms  11:45

Well, you know, you're not self conscious about it, which I think is, is wonderful and made it easier for us. But I don't know how you teach that to somebody, right? You just have always been that way.

 

Benny  11:55

I just kind of like I need it. Don't touch it.

 

Stacey Simms  11:58

So I guess the answer is you've been very straightforward about it little humor, but mostly not hiding it and saying here it is.

 

Benny  12:03

Sometimes I trick my friends into thinking they're giving me insulin, I disconnect my pump and I give them the pump and they still think it's connecting. They go, can I kill you? I say yes. And then I let them give me like six units, and they think that I'm gonna die. And it's really funny. Why would you tell me that? Because it's funny.

 

Stacey Simms  12:20

Why that is terrible that your pumps all messed up, especially with Control IQ. We think I don't

 

Benny  12:25

do that much anymore. Okay. So like, once, once, once every other month. This is more like a fifth grade thing. Yeah. Please tell me you don't do that anymore. I do it like once. Maybe I did it once with Jackson.

 

Stacey Simms  12:37

I'm gonna kill you. Okay. Let's see. Dee writes as a teen athlete. What are your best tips to manage on your own during a sports event or overnight sports trips. We have a lot of those this year.

 

Benny  12:49

We have but I wasn't

 

Stacey Simms  12:50

competing. I know which is why I wasn't which is why it was very easy for me

 

Benny  12:55

to let you go. I don't think it's very smart to be on your own with anything. ports, you should have at least one person with you that knows what's going on. Just you know, just in case but like, if you are alone, which is again, not smart,

 

Stacey Simms  13:08

she means on your own without your mom or dad, because you're on a trip is not going to be like the coach is going to be there. The team is going to be there. So why don't you talk a little bit about what you told the kids when

 

Benny  13:18

I first joined the team coach made us all sit down and made me tell everyone what was up. Basically all I told them was I have diabetes. It sucks. If I faint there's a thing in the in the pouch that you stick up my nose or you go to coach or the athletic trainer. Don't let me die.

 

Stacey Simms  13:39

Well and when you go on overnights you're not alone in the room, but there's not an adult anymore. Yeah. So what do you tell the kids that are with you?

 

Benny  13:48

I tell them the thing like the the nasal spray thing. So like see me if I don't wake up or if I pass out, do that and then go get coach.

 

Stacey Simms  13:57

What do they say? Are they like okay, yeah, they don't Nobody seems freaked out in there.

 

Benny  14:02

I mean, a bunch of them are scared of needles and it's fun to mess around with them but

 

Stacey Simms  14:07

and I do send you you know you have a kit, we make sure that there's lots of food and drinks and all that stuff. And you have your snacks and your your Welch's fruit snacks. That's one thing that made it easier in a way last year you weren't competing because you had your knee injury. So I wasn't too worried about the ups and downs this coming year, assuming all goes well and you wrestle again. I'm not exactly sure what I'm going to do for those first couple of overnights. Well, you said it like I was gonna ask you what to do. I'm not I'm either going to come near and stay nearby. Oh, no, dad,

 

Benny  14:43

if anyone's coming is that

 

Stacey Simms  14:44

that's a great idea your father can go. I don't think I would like I'm not gonna make you stay in the hotel room with me. You can still say with your friends, but especially with wrestling until we kind of figure out what your body's doing. I think it's really important to get a baseline and then get some protocols and figured out out from there, but I don't I don't intend to sit on You don't worry. I like this one. Kristen says, Is it true that Benny has the best mom ever?

 

Benny  15:08

No. Oh, you're off the show. No one has the best mom ever. It's literally not possible. There's like a couple billion moms. You know, Mother's Day is just passed.

 

Stacey Simms  15:20

But that was a missed opportunity, my friend.

 

Unknown Speaker  15:22

Um,

 

Benny  15:26

I mean, she's pretty good, but

 

not the best missed opportunity.

 

Stacey Simms  15:31

Best you ever had. Okay.

 

Right back to our conversation. And the next question is going to be advice. What would Benny tell his younger self? We'll get to that in just a minute. First, diabetes Connections is brought to you by Real Good Foods. And on their website. They have real reviews from real people, which makes sense because you know, this is all about real food. You feel real good about eating. And what's nice is with the record As you can see, it's not just people who eat super low carb or who eat keto. There are people who have celiac who can't eat grain. There are people who just love the way the food tastes right? There are people who talk about the airfryer, which is a great way to make so much of their food. It is delicious. We are big fans of their they can put this in the airfryer we're big fans of their new ice cream. And we really love the cauliflower crust pizzas as well, which do really well. In the airfryer find out more, just go to Diabetes connections.com and click on the Real Good Foods logo. Now back to my talk with Benny asking him your questions.

 

Mary says what advice would he tell a younger version of himself about being a teenager with diabetes? So I guess she means what would you say to yourself back

 

Benny  16:52

then? Keep doing what you're doing. You'll be fine.

 

Stacey Simms  16:56

I think that's an excellent advice.

 

Benny  16:57

Yeah, I was a pretty good child. Questions like, Oh, I wish I had depression. No, I was the best.

 

Stacey Simms  17:04

I think the only advice that you should give your younger self is, if you take your pump off to play football in the neighborhood. You might want to put it someplace smart like a mailbox, just because I lost it a couple of times worse,

 

Benny  17:17

just because I lost it a couple times. It doesn't mean you have to bring it up again. We always found it. Yeah, I'm pretty good. You're pretty good. Yeah. Your mother had to go your mother. Who is that? Oh,

 

Laura says does he have any good one liners when people ask about his tech? I'm a cyborg. You have so bad. And people believe me and it's really funny.

 

Stacey Simms  17:39

Okay, so here's an example. We'll go to someplace brand new and you make friends everywhere you go, which is

 

Benny  17:43

amazing. I'm kind of jealous of that. So we'll go to the beach where a smile. Yeah, we're just I just wear a smile, where it doesn't have to be real. Where I

 

Stacey Simms  17:52

smile. We'll go to the beach. And you will, you'll make friends but you have your shirt off your decks calm with the beginning. Put thing on, you know, either on your arm or your stomach. Do people ask about that? And they want to

 

Benny  18:04

tell him I'm a cyborg.

 

Stacey Simms  18:06

I'm so serious. And then do you kind of go into any more detail? Not if they don't ask. They just leave it at that. Most of them most of the time. They just leave it at that. That's funny. Okay, so this the next couple of questions came from a different Facebook groups. So while I know a lot of people in the podcast group, these came from a different on a group of moms with elementary school aged children, you know, saying this just as much for the listeners as I am for you. smart alec. has been he ever been bullied over having diabetes. So

 

Benny  18:36

let's talk about that. Then. No. Okay, unless I don't remember.

 

Stacey Simms  18:40

No, no. Let's talk about why you think you haven't been bullied about diabetes or picked on? I think part of that is because you were always a bigger kid. Right? So nobody was mad. No. As you listen, I've been trying to edit out that I'm saying And he keeps saying it so now we just have to leave it but but you were you were a bigger kid and you were a nice and fun kid. So nobody ever picked on you for much of anything. Right? I mean, I think the only time that we were in a quote bullying situation was when you were in like fifth grade and a little kid was so trying to pick on you. And you he was like it was like poking the bear with a stick. Luckily, you didn't you didn't take the bait. But I think one of the reasons why nobody picked on you is because nobody picked on you anyway. But also, you were so upfront about it. Yeah, that there was what are they gonna pick on you about

 

Benny  19:38

how your pancreas doesn't work? What if What a nerd

 

Unknown Speaker  19:42

but you were always there first to tell people about it and to explain and I was also like, the most popular kid in my elementary school. So

 

Benny  19:52

there's that too modest to ah, am I wrong?

 

No, I remember explaining At least there was a time where we were in the gym, and I was running around giving everybody high fives. And they were all chanting my name.

 

Stacey Simms  20:08

Well, that was I don't want to burst your bubble. There's fifth grade. Well, yeah, but it was also like a jdrf event.

 

Unknown Speaker  20:13

Oh, that was that school?

 

Stacey Simms  20:15

Oh, really? Yes. It was gonna be like one of the beam team. No, that that was

 

Benny  20:19

that was beam team at school.

 

Unknown Speaker  20:20

frayed right. I'm saying it was a purpose. Yeah, but I'm okay.

 

Stacey Simms  20:25

But that's a perfect example of how a diabetes thing made you feel great. Yes. And it's hard because I think some kids don't embrace it naturally, which I understand everybody's personality is different. I don't understand it. Well, you will when you grow up. But like, you know, your sister has a completely different personality. She's very introverted. She would not have enjoyed that. And I think she wouldn't have had the same experience you did. So as I'm talking as you're listening, I'm not talking to Betty right now as you're listening. I think it's harder for kids who are Shire, and I don't have that kind of advice so much because Benny's not that way.

 

Unknown Speaker  20:57

Some of the best. Well, you think you're the

 

Stacey Simms  20:58

best and as I said, And modest rude, but I think it's okay if your kid isn't out there saying I'm a cyborg and yeah, diabetes and get well not you never said da da da da let's rephrase, yay, beam team and jdrf and all that kind of good stuff when you were younger. I think it's okay if that doesn't happen. But I think that can also the more you keep it into yourself, the harder it can be when other people ask about it, and I think that can kind of lend itself to some difficult situations. Let's put it that way.

 

Benny  21:27

The lesson from all this tell everyone you have diabetes so you can't get bullied.

 

Stacey Simms  21:31

Well, I think it helps to be upfront about it. But you know, it's it's not my lessons. Your lessons better also be a big dude. always have a smile on your face. And I hate that you're thinking I'm talking about when you were like six or seven years I was still chunky.

 

Benny  21:47

I was cute though.

 

Stacey Simms  21:49

Hey, let's talk for a second because you're bringing it up. Let's talk about your

 

Benny  21:54

weight loss lost 50 pounds since the summer 50

 

Stacey Simms  21:56

pounds which is bananas.

 

Benny  22:00

Turn on, keep going.

 

Stacey Simms  22:01

Okay, that's fine. But can you talk about how you've done it a little bit only because as your mother, I was really worried when you start it, our dog is going crazy. I was really worried when you started because between diabetes and just body image and eating disorders and all this stuff, I was really concerned, but you seem to have done it in a really great way.

 

Benny  22:19

I'm gonna be so honest, I've absolutely no idea like how to describe what I did. I ate when I was hungry, but just enough, and then I drink a lot of water and Gatorade.

 

Stacey Simms  22:27

I can also chime in on just a little bit of what I observed. Because I was, you know, you know, I was making sure you were eating, you know, I was worried.

 

Benny  22:33

Yeah,

 

Stacey Simms  22:34

um, you seem to really just cut out empty calorie stacking. We never had a lot of junk food in the house, but you know, no crackers or you know, or things like that. And you stopped eating dessert. Not, not all the time, right. You do have dessert sometimes. But you really stopped eating when you're on the computer. Yeah. Because I think our house helped to now we didn't move until the beginning of March so you were already losing weight. The reason I bring up the new house is because In the old house, the playroom where you had your computer and stuff is right next to the kitchen. Yeah. So obviously it's really easy to snack. Yeah, but you get a lot of willpower and you stop that. But then we moved here. You have been away. The playroom is upstairs and the farthest corner of the house which is, which is great, because we have to hear you screaming. So do I know. But when you play Xbox, you're so loud and I don't really hear you until the hall has this quiet, dude, just don't scream. No, you

 

Benny  23:26

don't understand. Screaming it's part of the enjoyment.

 

Stacey Simms  23:28

But the point is, you've you've been able to have a lot of willpower. And also it's helped that you are farther away, but you eat dinner. You know, you eat breakfast, you eat food. It's really been amazing to see I would never have said you had 50 pounds to lose. So, you know, to me, you look you look really thin. Are you okay? I mean,

 

Benny  23:48

he's kilo. 15 pounds to lose.

 

Stacey Simms  23:49

Yeah, well, we're gonna talk about that off the year. With wrestling. We'll see

 

Benny  23:53

17 actually. All right.

 

Stacey Simms  23:54

The idea here is to be safe and be smart and get where you want to go without the interoceptive Okay, all right, you know, I'm right. We're gonna talk about that off the air. But, you know, the other things that comes with weight loss is you know, you're using a lot less insulin to, which has been really interesting to say, but you're doing great. Okay, and you need some new clothes.

 

Benny  24:13

Just an entire new wardrobe. I mean, we can't go shopping because of the quarantine stuff. So it's been wild.

 

Stacey Simms  24:20

I'm not taking you shopping. Okay, this is an interesting question. Elaine says, When did he start total self care, and then separately waking to CGM alarm. I don't wake up to CGM alarms.

 

Benny  24:32

Okay, I woke up to my blood sugar.

 

Stacey Simms  24:33

Oh, I was gonna say I know that. I was gonna say it wasn't true because I know you treat overnight and stuff so you feel that you wake up to your body. Yeah, I

 

Benny  24:39

never once woke up to an alarm. I'm a deep sleeper. When

 

Stacey Simms  24:45

I don't know because I'm not in your face all the time. But it seems to me that I've seen you go low and I know you treat and then you go back up. So you're waiting on wake up to alarm you're waking up because your body is alright. I've never woken up to an alarm. I will as the mom We'll let you say that I'm going to slightly disagree all

 

Benny  25:04

tell me about what happens if you wake up and you're filled up. And I'm sweaty. And I'm like this does not feel right. And then I stumble out of bed and if there's low stuff in my room, I take it and if not, I go downstairs and get juice and sit down there until my blood sugar goes back up.

 

When the dog comes, visits me, Oh, that's nice. When the dog comes as it comes visits,

 

Stacey Simms  25:25

that's nice when the dog comes to visit. I said I said, to answer the question here, too, we still use Dexcom. Share. We got the Dexcom when you were nine. We started share two years later when it came out. But we spent the first seven years of diabetes with no CGM.

 

Benny  25:41

That was scary. wasn't scary how we did it.

 

Stacey Simms  25:44

Well, you really you think that was scary?

 

Unknown Speaker  25:46

No, you don't remember it? Yeah.

 

Stacey Simms  25:48

How did we do it? We did it and it was a lot of blood sugar checks. We'll do a show on that sometime. Or at least a discussion of like the olden days, but I'll tell you what, I never really remember being scared. Well, that's not true. There was one time when you were low and you would not come up. That's when I was scared. But I knew you were low. Oh, well, it happened at home and then you threw up and you were fine. You just need to throw up and then retreated. And you were great. I don't know what that was all about. Well, you're gonna say,

 

Benny  26:15

so I had a counselor at a CCT diabetes camp. Yeah, name, Chris. And the entire week his blood sugar was just like 60 I remember that. He was not like a big dude. Like he was a tiny scrawny little dude. And he ate so much food. And his blood sugar just didn't go up.

 

Stacey Simms  26:35

Now. I remember he telling me about that. It's crazy. Maybe he needed to throw up

 

Benny  26:40

there, but it was the entire week. It's crazy. Like I had never seen a person eat so much food. And his blood sugar just didn't go up.

 

Stacey Simms  26:48

But it didn't go down. Right? It just

 

Benny  26:50

it was just 60 it was like 60 to 65 the entire week.

 

Stacey Simms  26:55

Well, the thing I was getting to with CGM is that I used to check You overnight when you were very little. And then as you got a little older, we would only check you overnight if we'd had a weird day, like we just knew something was going on, or you know you were very active. But I also went to work at 330 in the morning, so I would check you at 3am. When I got up, it was kind of easy. That was I wouldn't in my head. That wasn't an overnight check, because I was getting up to go to work. But obviously it was an overnight check. So when you got to CGM, and now that we have share, you might not wake up to the alarms, but I do so I mean, with Control IQ. And with our living situation with you upstairs here. I think I've treated one overnight low. And it was a compression though, right? You were laying on your CGM and I came upstairs and just enrolled you over and went from there. But to answer Elaine's question for real is he hasn't started total self care. No, no. Well, I don't think it's appropriate. You're 15 years old, and you're wonderful, you're independent. I could send you away for a week with anybody and you'd be fine. But in terms of real true self care, we're saving that minute do that it can you do that? A Ken Coleman right. But we're saving self care really here at home until your senior year of high school to give you a year at least maybe. Well, that isn't always talking about that's nice that he thinks that was that really threw dead under the bus. Yeah, well, that's what I do. I were thinking senior year, you're only a freshman. You're finishing your freshman year here. So we're we're still working on it. But I think senior year is good. And yeah, you do total self care when you go to camp Coleman, which is your regular month long camp.

 

Benny  28:30

The stories I could tell about the nurses. Well, some interesting ones. There's

 

Stacey Simms  28:35

a medical staff there but not a diabetes staff. So

 

Benny  28:38

there's a couple that are very good, though. Yes, that's a story for another But no, she only has to stay for two weeks.

 

Stacey Simms  28:43

We love Karen. Okay, so the best

 

Benny  28:45

she's the only Karen I like

 

Stacey Simms  28:46

no that's me. Like how can my best friend grant was a Karen weird name. All right. What were the most helpful accommodations for us school asks Heidi, I'm going to be very interested in what you say here. Repeat. What were the most helpful accommodate for you at school,

 

Benny  29:01

What was her name Miss? Oh, Miss Hyman Simon?

 

Stacey Simms  29:05

Yeah. Okay, so Miss Iman was absolutely. I guess the school called her a floater. She was a teaching assistant, who in kindergarten would come in and help you know, she was like the our elementary school always had a teacher and a teacher's assistant for kindergarten, but in first grade they did not have that. Your first grade teacher though, who was a take charge and take care of business lady. Oh, Harrigan, Miss Harrigan? Yeah, she was like, we are not fooling around with this. We need more help. So she got permission to have this time and float in and out and do and help you with your blood sugar checks. And then by the end of first grade, there was another kid by the beginning of second grade, there were four kids in elementary school and Miss Hyman was like the diabetes lady. And she would just help. That's so nice that you remember that?

 

Benny  29:51

I remember. Like I was with her all the way to like third grade.

 

Stacey Simms  29:55

Yeah, well, she left the school it was in

 

Benny  29:57

first grade to third grade.

 

Stacey Simms  29:58

Yeah. And then you Didn't you really didn't need any of the diabetic nurse? Oh, Julie, who has diabetes? Yeah, she was on the islet cell thing, right? Yes. She had an islet cell transplant. She's been on the show before. So as you listen, yeah, she told all about her islet cell transplant. And yeah, she's a really interesting story. So we'll, I'll link that up in the show notes. You can go back and listen to that past episode. Like Kumbaya,

 

Unknown Speaker  30:21

like if I Oh, yeah.

 

Benny  30:24

Um, do you have merge? conflict? The merge?

 

Stacey Simms  30:26

I don't have any marks. Yeah, one of these days I have my book. The thing that's nice about my book,

 

Benny  30:31

Lincoln bio,

 

Stacey Simms  30:33

Instagram, it's audio.

 

Um, but I would say for accommodations, we had a very, very light 504 plan. And our 504 plan revolved almost all about testing. Because in our school district, unlike many school districts, we actually had a written out diabetes management plan, and every child with diabetes whether you're on a pump or shots or whatever you would Have a de m MP diabetes medical management plan. And you had to fill that out. So that was kind of like your 504.

 

Benny  31:06

I have a question. Yes, of course, if like, let's say my 504 says I have to have my phone with me, right? Yes. And a teacher takes my phone.

 

Stacey Simms  31:13

Yes. What do you do? That's a great question. If you felt that your health is at immediate risk, I would excuse yourself and go to the administration office and call me. If you felt your test was at risk. I would take the test. And then upon completion, I would like does that teacher get in trouble? Like what happens? Oh, it depends on the school district. If it was a mistake, it depends on the parent. Okay, so let's say that happened to you. And you were like, I took the test anyway. Okay, and you got a 95 on the test. Okay. I would go into school. And I would say or call the school and I would say, Hey, I understand there's a misunderstanding. Let's talk about it. Let's talk through it. And I would escalate if she was like, if she was great and said, Oh, my God, I'm so sorry. I didn't realize that's one thing. She says. That's outrageous. You couldn't possibly then I escalate, right? We go to the next person, we go to the next person and this person, let's say you take the test, you get to 65. I would lobby for that score to be thrown out. And you could retake the test. We've never had to do that. Because everybody's good. Yeah, everybody's been very cooperative and accommodating. But I'm all for fighting for you. But I wouldn't start out with a fight. Yeah, I would start out with a Hey, what happened? and go from there. But I don't think it's fair to make you totally advocate for yourself.

 

Benny  32:29

I would hope you would. I mean, oh, yeah. No, if I knew something was wrong, I would leave the class I'd be like, ministration something's wrong.

 

Unknown Speaker  32:37

Right. me right.

 

Stacey Simms  32:38

Like if your blood sugar was high, and they wouldn't let you see the nerve. Here's a really good example. And let's not name the teacher. You used to have migraines. Oh my God, when you were growing up.

 

Unknown Speaker  32:50

Your teacher didn't believe you.

 

Benny  32:52

Even after I threw up right in front of her.

 

Stacey Simms  32:53

Well, I think that was that was the action I was gonna say. What do you think you did that made her listen a little throw up right in front of her threw up in the classroom. I'm right in front of her all over the books. Now, if you were not in the what was that fourth grade? Okay, so let's say you were a freshman in high school, you probably would have left a classroom and vomited in the bathroom and then gone to the nurse. But because you were in fourth grade, and you were probably really nervous to leave, or, you know, there's all these things going on. It's really unfortunate that had to happen. But, you know, it's good to talk about, but back to accommodations, because we have the diabetes medical management plan, which spells out how diabetes was treated, and also said things like, you know, you have to leave the classroom to the bathroom, you're not limited to water, how much water you can drink, all that kind of stuff that was laid out our school district, which is a huge one in the Charlotte area is wonderful about that. So our 504 was all about how he's going to take tests. And we started it in. I had a 504 plan, but we never really used it because of the testing situations. Don't ever use it. Well. Yes, you do. It didn't come into play until third grade finals, right into grade. So in third grade, we started kind of testing at different ways. Big to take tests, the beginning of grade tests. So we decided for For Benny, he wouldn't do anything differently except he's allowed to have his phone with him. He doesn't need his phone right now, really, because your pump has everything on it. But you still take it in, I assume you lay it on the desk at the front of the classroom, sometimes you'll keep it your pocket. Well, so

 

Benny  34:13

normal testing, like not finals and stuff. It's just in my pocket. But teachers are like, just don't cheat, but during and agree, like finals and stuff when like they like go and collect your phone. I just like, it depends on who's there. Sometimes it's just don't cheat, or sometimes I'll keep it at the front of the class. And if it buzzes, I'll tell you.

 

Stacey Simms  34:31

Yeah, I think for us, we're gonna find out this year about accommodations for the AC T and the SA T, and things like that. And that'll be an interesting thing to go through as well. If your child is diagnosed younger, this is really easy. Because you you figure it out as they get older. Right. And by the time they're in middle school, I think High School is when testing really starts counting. But I mean, it counts in middle school too. But by the time they're old enough to take these tests that really matter. Yeah, you're understanding what they need because some kids need a lot more money. than you do, your blood sugar doesn't skyrocket because of test stress. We have friends who they walk into their final exam and their blood sugar goes to 300. Really? Yeah. But I think right in terms of most important accommodation, I would say it's actually on the parents side. And that is being able to work with the school as a team, being able to go into those meetings and say, I want to be I want to work as a team. I want to see how this goes like let's work together, which sounds very Kumbaya and woowoo. But it really helps it helps me rather than going in and saying, I'm gonna fight for my kids rights. Like there are a lot of situations, unfortunately, where you do have to fight. But you know, going in without guns blazing is very dark principles.

 

Benny  35:37

Cool.

 

Stacey Simms  35:38

Well, your elementary school principal was he loved you.

 

Benny  35:41

I was his favorite. I don't know he was he didn't name favorites, but I was

 

Stacey Simms  35:44

he was fascinated with diabetes. He was really interesting. I mean, he wasn't he wasn't fascinated, in a weird way. But he just he admired the kids with type one. He really did. I was his favorite. Well.

 

Benny  35:55

He didn't say

 

Stacey Simms  35:56

he really admired what you guys were doing. It was interesting. School. Yes, your school counselor was great. He was a good guy. He and he did our 504 plans, we would meet with him to go to the fiber floors and he was he was very nice.

 

Benny  36:09

He was the guy that like if you got to go into his office, you were one of the cool kids.

 

Stacey Simms  36:15

We were very lucky to have a great Elementary School. Okay, and has been principal

 

Benny  36:19

had a lifted red Jeep. Like how much cooler does it get than that? I guess cool was an elementary school. Principal is the eye of the beholder.

 

Stacey Simms  36:29

has been he had burnout. If So when did he have it? How long did it last? And how did he deal with it?

 

Benny  36:33

Yes, yes.

 

Stacey Simms  36:34

Yes. Ever? Yes. So explain.

 

Benny  36:37

I don't want to do diabetes. Too much work.

 

Unknown Speaker  36:39

You get that often.

 

Benny  36:41

Yes. But how do you deal with it? video games?

 

Unknown Speaker  36:44

Do you just change the subject? Yeah.

 

Benny  36:46

I find that most of the time I just go Oh, well. It is what it is.

 

Stacey Simms  36:50

Well, I find it interesting cuz I wouldn't have said you've reached a lot of burnout.

 

Benny  36:53

Like I have my own opinions about that. I have been able to shoulder shrug a lot of things

 

Stacey Simms  36:59

like kind of compartmentalize. I don't know what that means, like, put it in the back of your brain and move on with your life. Yeah. So what helps you should play video games? Is that also like, just you're with your friends? Yeah. Do you ever talk to people from Camp or no? Well, you mentioned Justin and Jeffrey early on, is it? Like knowing that they're there? You'd have to call them?

 

Benny  37:18

I mean, I guess but like, I've never been the kid that's like, and life is terrible. I gotta just like, yeah, it is what it is.

 

Stacey Simms  37:27

All right, I have two examples that I want to bring up and see how you react. And we don't have to share these two examples. The first is when you were about 10. And you want them to take a pump break. Do you remember that at all? Yeah. What was going on? Like, can you share anything about that?

 

Benny  37:41

I remember talking to Michael. And like, the pens just seemed a lot easier. But then I was like, wait, there's too much math.

 

Stacey Simms  37:49

Well, your pump requested about three days, but that's when you started because

 

Benny  37:51

I was like, wait, there's too much math.

 

Stacey Simms  37:52

Yeah. And that's when you started giving yourself your own injections. Because you had only used us we don't use syringes. Remember before that, I don't

 

Benny  37:59

ya Yeah, I remember when I was like four.

 

Stacey Simms  38:04

And so to switch to an insulin pen seems really scary to you, but you did it, which was awesome. And it's helped us a lot since then there's too much math. Yeah. And there's also too many shots because you'd eat breakfast, then you'd get in the car and want an apple. You'd be like, what I do another shot. But then the other time, I wouldn't call it burnout. But we had I actually wrote about this in the in the book, you had a really bad night, you had a night where everything hurt, your inset hurt your Dexcom hurt. I think you had to do the same night. You're doing both and it was tough. You were really upset about it. And those things happen. I think it's important to acknowledge even for a happy kid like us, that was a terrible night.

 

Benny  38:40

But tomorrow morning, I was fine. The next morning, tomorrow. Ya know why?

 

Stacey Simms  38:47

But really can do mine. You don't have to share about it. But can you talk a little bit about?

 

Benny  38:51

I remember one time, like my incident didn't work like three times and then my Dexcom didn't work like twice. I gave up and I was like, I'll do it. The morning

 

Stacey Simms  39:02

that was the week that you actually met Rodney, the pan guy who we already mentioned him he was the first question dangling. I love Rodney and, and Colt Scott, the American Ninja Warrior dude. So we met them a couple nights later because we were out to dinner and you didn't talk about the night that you were so upset. But I think don't

 

Benny  39:20

remember what we talked about. I remember is Ronnie eating a lot. And I was. It was really fun.

 

Didn't barbecue there too.

 

Yeah. It was a fun night.

 

Stacey Simms  39:29

Yeah, but I think that just helps to kind of breathe the same air as other people with diabetes. Even though you've had a crummy night, it helps to be with your people because your mommy is helpful, but only to a certain extent. All right, I don't know that you can answer this question, but this is one of the last ones. Okay. How did you realize like, when did you realize you had diabetes? And how did you feel about it? You know, I can't answer that. I just I've just always had it. This mom says I keep wondering for those who are diagnosed early like my daughter with the healthiest way of thinking about it is and how I can help with that.

 

Benny  39:58

It's life. What are you going to do?

 

Stacey Simms  40:00

Well, I think a non 15 year old person answering that question a parent might say, I think that there are ways of explaining it that change, because there's different age appropriate ways of talking about it. When Ben he was teeny tiny right after he was diagnosed, my parents got him a Curious George doll, who we'd love Curious George, and he's just not better. Right. And we thought that he would do like imaginative play, right demo demonstrative play right here. I'm gonna give he did not do that with the curious church, but he did. Oh, yeah. And so Elmo got shots. Elmo had juice boxes, Mo got insets

 

Benny  40:34

mo love juice boxes,

 

Stacey Simms  40:35

right Elmo love juice boxes. And that's something that helps kids process that they have diabetes when they're very young. And as he got older, we would read stories, we would tell other people, we did a presentation for your class every year that changed as you got older. And then we started talking about age appropriate stuff. So when you're talking about like independence, what has to be done? When you're talking about driving what has to be done right Later, we'll talk about about when you're living by yourself, right? Well think about it as a parent, how much?

 

Benny  41:04

It's fine. You guys have no responsibilities,

 

Stacey Simms  41:08

I'm going to touch on driving just a little, because somebody did ask about that. You're doing really well with driving. But you

 

Benny  41:14

want to talk about what you have to do before you drive. I checked my Dexcom.

 

Stacey Simms  41:18

And right, that's it, you check your blood sugar. If you're below 80, you can't drive. That's our simple rule. And we have to make sure there's stuff in the car. And I'll be honest with you, I'm going to make sure that you have low stuff in your car for the first year or two because it's just like anything else. You have to learn. You have to get used to it, they'll be independent. So with driving that's, that's I'm terrified, but not really because of diabetes, but you're pretty good driver,

 

Benny  41:39

the best

 

Stacey Simms  41:40

and modest to I am honest,

 

Benny  41:43

like I'm really modest. All right, and then

 

Stacey Simms  41:44

do you do any diabetes goals in the next couple of years like are there certain now

 

Unknown Speaker  42:00

You're listening to diabetes connections with Stacey Sims.

 

Stacey Simms  42:05

See, Why weren't you about how we are to each other, I can't believe I said, I hate you there at the end. Oh, although I gotta say, Oh my goodness, I am going to play a little bit more at the end of the show the very end so you can understand what I was putting up with for a lot of that interview and some of the stuff that we had to take out, but I hope some of that helped you. I'm also going to link up a few of our previous interviews with Benny, I've talked to him a couple of times on the show. And it's interesting. Not only is his voice changed a lot as you can imagine, but just to hear how things have changed. I'll do that at the episode homepage. There is always a transcription. I have no idea what this transcriptions gonna look like the first time I run it through the computer. That's gonna be fun, but we'll put that there as well. And update. Interestingly, after this interview, he really did agree to stop taking the true Seba. So for the first time in almost two years, we started the trustee but in August of 2018, he is not taking long acting With his pump it because his insulin needs have gone down so much, obviously with the weight loss, but also with puberty. He loves what I talked about that, and I'll keep you posted on how that's going. I'll tell you what, so far what he's not eating. It is amazingly steady just like it has him with Control IQ. It's maybe on average, 10 to 15 points lower. So if he was running at like 110, he's now running at 85, that sort of thing, because just that little bit more control of the algorithm is really helping, at least in the short run. But for the last two days, I swear that kid has forgotten to bolus for every single meal, everything he eats. I don't know what's going on. But I'm trying not to make a big deal about it. We're just gonna move on. We're just gonna remind we're not gonna nag. I'm sure he would say something different. All right. Well, anyway, I'll keep you posted on that, but he really is doing great. And I like that he comes on and talks about diabetes, even if it may not be what I want to hear or I want you to hear something. Tell me something good in just a moment, but first Diabetes Connections is brought to you by Dexcom when Benny was very little, and in the bathtub or at the pool, I always noticed his fingertips. I mean, you know exactly what I mean, right? When you've got diabetes and you're checking and checking and checking and poking and poking, when your fingertips get wet, somebody in the community called it Franken fingers. They were just full of little pinprick holes that you could really, really see. And you know, he is 15 I don't see his hands too much. Although I did peek when he was looking at the microphone and hanging out in the studio here, studio. Well, it is a studio, it's my office. I noticed and his endo looks at them every single time we go in that they are just normal. They are not those Franken fingers anymore. I mean, we've been using Dexcom for almost six and a half years now. And with every new iteration, we've done fewer and fewer finger sticks. The G six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about doing 10 finger sticks a day, which is what we did in the past. I mean that was pretty every day makes me so glad that the Dexcom has helped us come so far. It's An incredible tool. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions, learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

And tell me something good this week, a quick book update, not my book, but some other terrific books in the diabetes community. And these are books that have been out for a while that are highly recommended. And we all pass them around to each other, but they're getting updates. And I think it's really important because Gosh, think about how much has changed just in the last couple of years. So the first one I want to tell you about is understanding diabetes. This is better known as The Pink Panther book. I still have no idea why the Pink Panther is involved in this. And it's the actual Pink Panther. I mean, they had to have gotten a trademark but if you've seen this book, you know what I'm thinking. This was the first thing I thought when they handed it to me in the hospital. Why is the Pink Panther affiliated here, but that's a mystery for another time, I suppose. Anyway, they're on the 13th edition which you Come get us a discount because the 14th edition is coming out this summer. This is put on by the children's diabetes foundation. I will link this up in the show notes so that you can order a new book, let your endo know as well, if they're interested and it does come in Spanish. It is also available in an ebook form in a Kindle, so you can get them in lots of different ways. The Pink Panther books, the mystery continues though as to why that character How do they get the trademark anyway? All right, the next book is think like a pancreas, which is a must have, in my opinion, A Practical Guide to managing diabetes with insulin. Gary doesn't need my seal of approval here he is already the number one new release in nutrition and medical health sciences on Amazon. But I think this is really important because I recommend this book all the time. And this is the newest update for it. It's a paperback and an E textbook. And as the description says the all in one comprehensive resource for the millions of people living with diabetes who use insulin. The updates here include, as you would expect new medications, new technologies, injection devices, dietary recommendations. We've had Gary on the show many times he describes himself as a human guinea pig, because he lives with type one and he tries all of these devices, but he also talks about the science behind them in ways that I think is really clear. If you've listened to my interviews with Gary, you know, I generally feel kind of like a goofball. When I talk to him, he's very calming as well. If you haven't gotten this book before, highly recommended. If you have and you're looking for the update, probably the textbook is your best bet and I will link that up in the show notes as well. And finally, and tell me something good, lots of graduations to celebrate. Of course they're not the usual graduations people got very creative with how to celebrate their kids this year, but I know a lot of you were hoping for bigger ceremonies and more tradition. I want to take a moment to highlight just one of the many valedictorians that were spotlighted in some of these Facebook groups that I saw Jeremy bright was valedictorian and thank you so much to his parents for letting me share his story. Jeremy was diagnosed with type one at age 14 and he has a scholarship to Florida Polytechnic University to study computer science this fall. And once Jeremy's parents posted about him in this Facebook group, several other people chimed in with my tea Wendy is a valedictorian as well and you know, they kind of went and listed a few other kids didn't get permission to share their names and or their stories and and that's okay, but I think it's great that so many kids are at least getting the credit that they're due for working so hard through high school I don't know about you guys but it seems sometimes that for these kids I know the workload on my daughter High School was almost worse than college maybe it's just the pressure of you know, they have to do so well and I tried to eat that off for my daughter, but man it is hard when all the high schools are telling them you know, take this class get this college credit all these tests AC t sad. Oh, all right, just a little bit of editorial on my part and we shall see Right with all the wackiness that's happening this year with some colleges not you know, counting the standardized tests, we'll see what happens going forward. But anyway, congratulations to these great kids. If you have a Tell me something good story, please let me know you can reach out Stacy at Diabetes connections.com post in the Facebook group, you know, send a carrier pigeon, whatever it takes. I would love to feature your child or you in our Tell me something good segment.

 

Before I let you go, it's worth noting that we are right at the five year anniversary of the podcast I had Episode 300. A couple weeks ago, I made a bigger deal about that. The five year milestone is something I'm sure I'll mark on social media and talk about a little bit but I'm bringing it up here because well first of all, I can't believe it's been five years. I can't believe that I'm still doing this. I didn't have a timeline in mind when I started the podcast but I don't think I thought five years later I'd still be doing it and loving it as much as I do and it would still be growing but I bring it up because If you're listening to this point in the show, then you are a true listener. And I appreciate that. And I would urge you to please join the Facebook group Diabetes Connections, the group, I'm going to be doing some polling in the next couple of weeks. I'm not sure what we're going to do with the podcast in 2021. And I know it's a little bit early to start thinking about it. But I plan for the next year. I mean, in terms of sponsors, let's be frank, I usually have all that sewn up by August or September. And I don't want to be in a situation where I decide to make some changes. And then I'm scrambling at the end of the year. So I'm going to be asking questions like you know, frequency length, what do you want to hear? I think after five years, it's time to take a tough look at this like a hard look at it and decide what do we really want to do? Where are we going with this right? And if it stays the same, fantastic. I love doing it. But if there's something that you would prefer to hear, you know, maybe it's all technology news, maybe we go once every two weeks, but we only do news updates, that sort of thing. Maybe you really like the personal stories and we stay with that we do a mix. Maybe we make up Longer show a shorter show, you know, there's lots of options. But I want to hear from you. So please watch for surveys over the next couple of weeks. But you got to be in that group. I'm not going to make these public. I don't want people who don't listen weighing in. I mean, come on. And I really can't thank you enough, five years later, to have as much fun as I'm having and to keep doing this and hearing from people who enjoy it. That's the best. Thank you as always, to my editor john Buchanan's from audio editing solutions for making sense of this week's interview and everything else that he does. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Unknown Speaker  51:41

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

 

Stacey Simms  52:04

You can you can take that to your room when we are done.

 

Unknown Speaker  52:09

Disgusting.

 

Unknown Speaker  52:11

No, take it with you Why? And I

 

Stacey Simms  52:13

have a place to put it or leave it over there because I'm going to throw it away. If I well why would I keep it I take that two places with me like here. Let me interview with a man with a microphone that's been inside my son's mouth. I think you would love it especially in this day and age.

 

Transcribed by https://otter.ai

Dr. Nat Strand is an anesthesiologist who lives with type 1 and a mom of two young children. She just contributed to a paper all about pain management guidelines in this difficult time, when many people can’t see their doctors to face to face. You also may know her as the winner The Amazing Race in 2010. Of course we also talk about having T1D and that crazy travel show!

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Episode Transcription: 

Stacey Simms  0:00

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

 

Announcer  0:20

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:25

This week, Dr. Natalie Strand is an anesthesiologist who was diagnosed with type one as a teen. And she says people who live with chronic pain and people who live with diabetes have a lot in common.

 

Dr. Nat Strand  0:39

and we may think the person who lives with it is thinking about all day long with every activity you know before they go to bed when they wake up in the morning, but the people around them even loved ones, you know and household. kind of forget because you look healthy.

 

Stacey Simms  0:53

Dr. Strand just contributed to a paper all about pain management guidelines in this difficult time when many people Can't see their doctors face to face. You may also know her as the winner of The Amazing Race in 2010. Of course, we talked about having type one and that crazy travel Show. I'm a huge fan By the way.

In Tell me something good: virtual events, firefighters and a Lego master. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. I'm so glad to have you along. I know Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. And I am so excited to finally talk to Nat Strand. I can't believe that we haven't crossed paths before. I'm a huge fan of the amazing races. I mentioned I started watching it in 2001 when I was pregnant with my daughter, and I actually remember the commercials when it was like coming soon. And then of course September 11 happened and how are they going to be able to do this they thought the show might not have a second Season. So, gosh, that was such a long time ago. But it is amazing to see that even with COVID-19, which stopped the show again, they're going to be continuing that in the future.

But that's neither here nor there. I mean, we're talking to Dr. Strand about pain management her life with type one. And of course, we'll talk about the amazing race as well, but she wanted with her partner and fellow doctor in 2010. So taking a look back, I want to bring you up to date before we get to the interview about something new that I just announced really a couple of days ago on social media, and that is my book to clinic program. Of course, the book is the world's worst diabetes mom. And one of the things that I have found really fascinating is that although I am obviously a lay person who wrote an advice book for parents of kids with Type One Diabetes, I've been really fascinated by two things. One is that adults with type one are buying and reading the book and then giving it to their parents to talk about, you know, their childhood if they were diagnosed as a kid or wants to learn Learn more about the parent perspective, which I thought was fascinating. But I'm also hearing from diabetes educators and endocrinologists who have told me and I know I sound surprised here and this is genuine. I'm not trying to make this silly. They have told me that they have learned things from the book. And you know, when you think about it, it really isn't a surprise, because it's the layperson perspective. These are things you do not learn in medical school, right? These are things you learn when you mess up diabetes, when you're at the beach, you're in the car. It's the middle of the night, you're macgyvering stuff together. This is stuff you've learned when you live with type one.

And to that end, a few clinics reached out and said, Can we have copies of the book to give away and so I started a new program, it is called book to clinic. Bottom line, I'm looking for sponsors to pay for these books, so we can get them to people who need them. It's very reasonable. It's a very easy system. I will put more in the show notes and there's a video that's on social media you can see the whole thing and how it works. big thank you to my first two sponsors because the books have already gone to clinic. Thanks to T one d 3d year, and Big thanks to frio so you know I really appreciate the faith that they have shown and if you have a product or a blog or another podcast and you're looking for some very reasonable advertising that is targeted to an audience that is looking for you, please let me know and you can reach out to Stacey at Diabetes connections.com. I’m really excited about it. It's one of those things that you just don't expect to happen. But you know what, we'll see where it goes.

Diabetes Connections is brought to you by Real Good Foods, and they have already new ice cream flavors. We love their ice cream and they're kind of hard to get right now. they've they've silted up a couple of flavors. But man they are so yummy. I cannot wait to try the mocha Java chip ice cream. I'm a huge fan of coffee and chocolate and their original flavors that we tried way back when beginning of March. I think we did that Facebook Live where Benny and I tried the ice creams. They were so delicious. We really liked them in chocolate chip, everybody in my household Loved the peanut butter chocolate chip ice cream or big peanut butter people. The new flavor sound amazing. I mentioned the mocha Java chip, the cake better ice cream. My kids love that. And something called super premium almond charcoal ice cream. That sounds amazing. So let me know what you think if you've sampled the new flavors, we haven't been able to try them yet, but I'm really excited and of course Real Good Foods has real good food. They have a whole line of high protein, low carb grain free gluten free. Good for a keto diet if that's your thing. Everything from cauliflower crust pizza to stuffed chicken and breakfast sandwiches, find out more Just go to Diabetes connections.com and click on the Real Good Foods logo.

If you've already heard of my guest this week, chances are you're a big fan of The Amazing Race TV show. Dr. Nat Strand won the whole thing in 2010, part of the first all female team to cross the finish line first, along with her friend and race partner, Dr. Cat Chang. Dr. Strand is also the first winner with diabetes and she might really think We'll be the only contestant to compete with type one. I started watching The Amazing Race. As I mentioned when I was pregnant with my daughter and I have been meaning to talk to that for a long time. I'm so thrilled we finally worked it out. She's an anesthesiologist and a pain medicine specialist working at the Mayo Clinic in Scottsdale, Arizona. Recently, she contributed to a paper on caring for patients with pain. During the COVID-19 pandemic. She was diagnosed with type one at age 12. So we have a lot to talk about. Here is my interview with Dr. Nat Strand.

Dr. Strand, thank you so much for joining me. I am excited to learn from you and to hear your story. I followed you for years on social media. So thanks for coming on.

 

Dr. Nat Strand  6:42

Oh, well, thank you so much for having me. It's an absolute pleasure,

 

Stacey Simms  6:45

so much to talk about. We will get to the stories and living with diabetes and your diagnosis story. I want to start out and just jump right in with what caught my eye recently, which is a study to what you contributed about caring for Patients with pain during this pandemic. I don't know that you can really share too much about the study. But I'm curious like, you know, your anesthesiologist, let me start with asking you what are you seeing right now? What's going on in your world,

 

Dr. Nat Strand  7:14

where I'm located in Phoenix, Arizona, we are thankfully not experiencing the surge that we thought we were going to have. So four to six weeks ago, there was a lot of work as far as preparing on a community level. All the hospitals governor mandates to increase capacity of hospital beds, things of that nature. So we were certainly preparing for a surge. But I think a lot of people in our community have made personal sacrifices with the social distancing and the stay at home. And I think that that has helped us flatten the curve, as I say, not quite bend the curve because we're still increasing cases here but flattened the curves. Right now. What I do is practice pain medicine, we largely transition to telemedicine to avoid face to face visits and allow patients to access health care. While they stayed safe at home, so predominantly in the last few weeks, I have been treating my patients with telemedicine.

 

Stacey Simms  8:08

And how does that work? Because I would imagine that pain management is already a very delicate balance. You know, we hear about, Oh, you don't want to take too much of this medication or you can get addicted. And then when people are concerned about not seeing their doctor face to face, you've got to be worried about well, are they even managing their pain? Or are they suffering? Can you share a little bit about how it's been going?

 

Unknown Speaker  8:27

You know, I think for the most part, it's been excellent. With two way real time, audio and visual, I think you can get a good sense of how patients are doing. And as far as managing medications, you know, certainly the opioid crisis was there before we call the pandemic that the word crisis is still there during the COVID pandemic. So, you know, it's not the answer isn't just to prescribe a bunch of opioids. Now, some people benefit from it, but a lot of people can do manage with other texts. Consider that the anti inflammatories, neuropathic pain medications, lifestyle alterations, weight loss therapy and even with you know, the social distancing and stay at home, there's a lot of physical therapy that you can do from home too. So I think this challenge in medicine is really forcing our hand taking advantage of telemedicine and taking advantage of remote care and certainly providing access without being face to face now we are now open for elective procedures in Arizona so we are able to keep patients face to face but for a period of time there we really were forced to jump on the telemedicine bandwagon, maybe a little sooner than most of us were prepared to do that. I've been very pleased with the ability to offer access to patients, especially patients who are at higher risk, whether that be due to health concerns or age or even for patients that have to travel long distances to see a physician. So I think easing the burden on those patients and their situations to allow a little bit lower barrier to entry. healthcare access has

 

Stacey Simms  10:01

pardon my ignorance on this question, but when I think of seeing a doctor for pain management, and fortunately, I haven't had to have a lot of that in my life. So again, I'm ignorant on this. I don't think of an anesthesiologist. Right as the person that I would see I think of you all in the operating room.

 

Dr. Nat Strand  10:18

You're not alone. You know, when you do a residency in anesthesiology, you basically spend three years after your internship focusing on ICU level care, operative care, regional anesthesia, select nerve boss, epidural catheters, those kinds of things. So you become an expert at acute pain management, both with medication bandwidth intervention, so there's a fellowship option afterwards. And one of those planners either you can go into ob anesthesia, you can go into cardiac anesthesia, you can go into intensive care, you can also go into interventional pain medicine, so you kind of utilize that and there's a small skill set you developed during the anesthesia residency to further hone that Then focus on mega spinal injections, radiofrequency ablation of the spine or large joints, implantation of spinal cord stimulators or implantable pain pumps. So, you know, it doesn't seem like a natural progression at first glance, definitely. But when we kind of think about what we do in the bar and how that can translate to an office setting for chronic pain patients who kind of come to the bridge to the specialty,

 

Stacey Simms  11:27

yeah, yeah, of course, that makes sense. So tell me about this study. Because this is all about caring for patients with pain during the pandemic, not necessarily patients with COVID-19. This is something that is more of a guide for physicians,

 

Dr. Nat Strand  11:42

who's our recommendation, we worked with the American Society of we China presenting medicine to put out recommendations and then we also the paper you're referencing with that International Paper with the European society, of regional anesthesia also, and we just kind of want a different side provides some guidance during this pandemic early on, know how to handle urgent procedures, semi urgent procedures, you know, what was the risk of using steroids? You know, what can we do to manage our patients that were on chronic opioid therapy. So they really was sort of a set of guidelines after discussion of a panel of international pain medicine experts.

 

Stacey Simms  12:22

It does seem that chronic pain as I read through a little bit of the study, you know, just the introduction, things like that. It seems like chronic pain is so debilitating, especially for older people. I know we're a diabetes podcast, we're going to talk about diabetes in just a moment.

 

Unknown Speaker  12:37

But is there

 

Stacey Simms  12:38

you know, any advice that you would give someone who is suffering who feels like I don't think there's something for me? I've had this pain for so long. I'm afraid of being addicted. You know, we hear all those stories. Any reassurance?

 

Dr. Nat Strand  12:48

Absolutely. And one thing I want to say, You reminded me we talked about the food diary podcast. I think we're a lot of similarities between living with chronic pain and dealing with diabetes. I mean, they're totally different disease states. But if you talk about an invisible disease, that the person who lives with it is thinking about all day long with every activity, you know, before they go to bed when they wake up in the morning, but the people around them even loved ones, you know, a thing household, kind of forget because you look healthy or you look okay, you know, so yeah, that experience of living with diabetes is very similar to the experience of living with chronic pain.

 

Stacey Simms  13:27

That's really interesting, especially and even to my question of people are almost afraid to speak out because they're afraid they won't be taken seriously, or they'll be blamed. I didn't even think about that.

 

Dr. Nat Strand  13:38

Yeah, I mean, and, you know, you don't want to be a complainer or you want to put on a happy face. You feel like it's not interesting to other people, because it's the same thing it was yesterday and so, you know, I think living with diabetes myself, I bring a lot of that to counseling people who live with chronic pain because I get it, you know, and a lot of times they feel really, you can tell they can feel like, Oh my God, that's the first time anybody's really related to me on that way, you know more than just diagnosing the underlying cause of their pain, but actually, what it means to them to live with a condition like that. So I think that actually me having my experience of living with diabetes helps me relate to patients who live with chronic pain.

 

Stacey Simms  14:16

So let's talk about type one. Let's talk about your experiences. You were diagnosed as a young teenager, really, pre teenage 12 to remember your diagnosis story.

 

Right back in just a moment and telling your story there, but first, diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop, and I was really impressed how much they get diabetes. It really does make sense their CEO, Jeff was diagnosed with type one as an adult. In fact, I just talked to him last week about something else. It's always so good to talk to him because he gets it. He knows what this is like. Right? One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly. To remove all barriers between you and the care you need get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo. Now back to Nat and I had asked her if she remembered her diagnosis story.

 

Dr. Nat Strand  15:34

Do I remember that summer being really annoying and my family's road trips I remember going up to Northern Arizona and having to stop use the restroom all the time and it's a short like two hour drive. So I do remember my parents saying we'll stop drinking so much. You know of course now we know that the opposite. And then I went to like a three day sleepaway camp and at camp I was getting some notoriety for how many cans of soda I was drinking, I was going to the vending machine. And I was drinking so much that point I'd like built a pyramid of all the cans. I think, obviously I was going into either some decay or you know, just hypoglycemic diarrhea. So, I came home, my dad is a radiologist, he started to suspect that I might have diabetes. And I think he brought home some like urine ketone strips or something and tested them. And I remember it was like black. So he actually took me into the hospital. And I remember him telling me I was going to the hospital. And I had this bag of gummy bears in my room. And I vividly remember looking at those gummy bears. And you know, in a typical kid, that was what I was sad about was like, Oh, I'm not going to believe me. There's I had no idea what the rest of the diagnosis meant. But at that time, you know, you were admitted. I think I stayed in the hospital for 10 or 12 days and learned how to give myself injections and carb counts and there you have it. That was kind of my guide. It was truly not traumatic in a way. I mean, I didn't have some big bad events that veiled the diagnosis. It was kind of suspicion. Then that was the summer before I went into middle school. So I got to carry a purse everywhere. So the diabetes supplies I thought that was pretty cool.

 

Stacey Simms  17:17

Did you know you wanted to go into a medical field when you were that age?

 

Dr. Nat Strand  17:20

No, I don't think so. I had dreams of being like an oceanographer or a National Geographic photographer, kind of more creative, worldly, growing, no roots type of careers. But it wasn't until later. I think I had an interest in medicine through diabetes and my you know, you get a lot of exposure to physicians and hospitals at a young age. But it wasn't until I was in college that I really solidified my desire to go into medicine.

 

Stacey Simms  17:46

And what made you choose anesthesiology? Do you remember having a process

 

Dr. Nat Strand  17:49

for that? Well, it's certainly you know, matters a lot about what rotations you get. And if you have a great attending on a certain rotation that makes you know just kind of lights it up for you and that kind It happened to me for anesthesiology, bad reputation as a third year medical student and I just had a series of phenomenal attending physician to let me you know, place IVs Let me place lines, I intubated patients, I was in on some bigger cases. And I remember at the time, which of course you you changed your mind on this as you get older, but at the time, I wanted to be, you know, really where the emergencies happened. I wanted to be, you know, a first responder I wanted to be someone went down and had an emergency, I wanted to be there to be part of it, you know, traumatic, and now that I'm older, I kind of like No, I'd like something with Office Hours. You know, nobody needs you in the morning. But at the time, I wanted to be right in the heart of the action and there's nowhere better for that than being you know, in an operating room every single day and you get to help people. That's often the most terrifying thing they've ever done. And you have just moments for them to establish trust with you. Even if it was pediatric cases or you know, even on babies, you know, a parent literally can do their baby. And then you take it down the hallway. And so there's this intense trust that needs to develop over a very short period of time. And I always felt like that was something I really helped sacred as that amount of trust that someone had any for their loved one or for themselves.

 

Stacey Simms  19:22

We have had to have, you know, anesthesiologists, we've had surgery, both of my children over the years, and I always in the consultations, or when they come in, I always say to the anesthesiologist, you are the most important person in this room. And I try to say it when the search is not around, but I don't care. Because to me, that's the one and I, you know, it is such a huge responsibility. And I have such respect almost all and when you said, you know, you take your child down the hallway, if you've been there like I have, you know, your heart is in your throat for the entire time, and it must be such intense, not only the training, but just the experiences that you go through. Do you all Good, this is kind of a personal question, do you will have a community? Do you help each other out? Do you think there's Okay, mental health among anesthesiologists, because that's gonna be so difficult. So that's a huge weight to bear.

 

Dr. Nat Strand  20:11

It's a huge weight to bear. And I think, you know, I don't want to pretend like I'm on the frontlines right now, because again, I do outpatient pain medicine for the majority of my practice, but especially some of the anesthesiologists that have been called to intensive care units, and that are on COVID airway teams. And some of my best friends from training are in hospitals that are saturated with cases and other states. And so I think that mental health is a huge issue, the amount of stress, the amount of burnout, the amount of anxiety, the amount of fear even about you know, PBE and that kind of thing, especially in the beginning, when some of the supply chains weren't, you know, as mature again, I'm not talking about my personal experience, but people at other hospitals. So, you know, I think in general, it's an issue and I think acutely, it's even a bigger issue. I do see resources. I think people do In the pandemic are very aware, I even read a story about a physician suicide in New York for an emergency medicine physician, you know, so people are aware, and I think there are resources available now, especially that are free for physicians. But in general, I think mental health is unfortunately still kind of has a stigma where in medicine, I think self care is often last care. You know, people go to work when they're sick. For the most part, people go to work when they're tired. People work long hours overnight, you know, into the next morning, so I think mental health kind of goes along with physical health and, you know, you just kind of do what needs to be done and the needs of the patient come first. And so for a lot of physicians and all specialties, I think self care, including mental health really is a challenge.

 

Stacey Simms  21:42

I have to ask well, I have an anesthesiologist who also has type one and I mentioned you know, my kids, one has type one and one does not have both had surgeries where they required hospitalization and anesthesia. Are there any best practices or any bits of advice that you can share with the diabetes community to help us make the hospital stays, you know, we're not talking about COVID-19, obviously, but you know more routine stuff. Is there anything that we can do or better prepare, so that when we go to the hospital, if it's an adult or child with type one, that we can kind of help the healthcare teams take better care of us.

 

Dr. Nat Strand  22:16

So I think one of the things is to try to speak with your anesthesiologist ahead of time if possible. So if you're having a plan surgery, and you know who the group is going to be, you may find people within that group that have a little bit more experience and interest in managing type one, that would be number one is to really see if you can identify someone, even if there's not someone who has specialized experience just so you can come up with a plan. I would definitely suggest having a plan with your endocrinologist written out that can be given to the anesthesiologists. You know, I'm thinking of when I've had surgery or when I you know, had my C sections with my kiddos. I think that having the endocrinologist involved so they can, you know, give their support and of course, the You're going to do what they're comfortable with and what they know how to do. And sometimes that's changing, you know, insulin pump to IV insulin. And you also have to balance that with if someone's not familiar with it, and they don't have trust in it, they have to administer the care that they have trusted. So there might be some education involved. Of course, it depends on you what the case is the length of the case, the intensity of the case, those kinds of things. So I think if you're able to, if it's a short case, if the anesthesiologist is comfortable with the plan, I would love to always keep my insulin pump on and my guests come on, but I do know that sometimes, that's just not possible and you have to switch to, you know, other types of influence. So it's kind of uncomfortable for everybody. But I think if you can communicate ahead of time and create a plan that's most comfortable for everybody involved. That's important. And of course, you know, whatever is going to keep anybody safe. You know, avoiding any hypoglycemia, avoiding any severe hyperglycemia. And of course, just getting you to the other side when you can take over management yourself again.

 

Stacey Simms  23:59

Yeah, what We did the last time but he had surgery because the first the first time he had surgery, he was teeny tiny, I think had been diagnosed for, I think he was seven or eight months in. So he was about he was still two. And he had no, he had no decks. And he did have an insulin pump when this was like 13 years ago. So everybody was all excited to see the pump. It was very interesting. But he did great. And then this last time, he needed surgery, he had knee surgery late last year, and they were amazing. But we decided that it would be easier for the anesthesiologist to just look at his Dexcom numbers on his pump, not his phone, because the pump you unlock 123 right, the tandem pump is super simple. We figured the phone could lose signal, the phone could be harder to unlock, you know, just he's got like an, you know, a six digit code, and why would I remote monitor from the waiting room? What the heck was I gonna do? You know, they would know, they would know I had faith. They were great, and it really worked out well. So it was a really positive experience. And interestingly in the 1213 years that had come by that hospital Steph was really well educated about pumps and CGM, which was a really pleasant surprise for us. So that was good.

 

Dr. Nat Strand  25:06

Yeah, that's awesome.

 

Stacey Simms  25:08

All right. So I think I'm not alone in that the way many of us were introduced to you was on national television was on The Amazing Race, which is, it is the best reality show. It's my favorite of all time. I started watching it. I looked this up the other day that I couldn't believe it. I started watching it in 2001, because I was pregnant with my daughter and I couldn't sleep. And I used to watch it all the time. And I adored it.

 

Unknown Speaker  25:31

And you guys

 

Unknown Speaker  25:32

want it?

 

Stacey Simms  25:34

I know a lot has been said a lot has been written over the years about this. What was that? Like? I mean, what do you most remember about it?

 

Dr. Nat Strand  25:41

Yeah, that was 10 years ago now it's really crazy. But you know, there's there's the experience of doing amazing race of traveling around the world was nothing. I mean, you have a backpack but you know, you're going to the Arctic Circle, you know, you're going to go to sub Saharan Africa, you know, you're going to go we we didn't know exactly where we're going. Go back, watch the show myself enough time to know I'd be really cold, really hot, really dirty. But you have a backpack, you have no money, you have no maps, you have no cell phone, you have nothing. And so just being stripped down to sort of your just immediate resources to figure things out like that, because that was as interesting as it was to see the world. I mean, I had never been so stripped down of things I had access to, you know, being a study or I would have references for everything I kind of just get thrown into the world and open a clue and say, make your way to Stonehenge, you know what I mean? It's not like you get direction. So it was while that I did it with one of my very best friends, who's another anesthesiologist, Dr. Catching and we we had a blast. We went around the entire globe and I think it took us 21 days total. And then I came home and slept for like six. And after that, you know, the show starts airing in the fall and it airs. I think it aired from September to December or did at the time. So what sticking it was a whole nother like phase two.

 

Unknown Speaker  27:03

Oh yeah, with all the

 

Dr. Nat Strand  27:04

editing and the production that they do to their production, what the other teams were doing, you know, you see a lot of backstory or parallel stories that you didn't see at the time, right? Because you were just with your team, so very interesting to watch it after having lived it. And then I think phase three of it is getting to be like a C list celebrity for a year or two, which was also very weird. So there's like three phases of The Amazing Race that totally kind of changed my life. But overall, I was so positive, I have nothing but fond memories of doing it and the people that I met and, and I also remember thinking the world is a lot safer and friendlier than I would have thought, you know, if you just drop off to Bangladesh for 48 hours, with no plans, you know, people just kind of help and you and you're frenetic and you're tired and you're racing and you run up to strangers and you asked them questions really quick and, you know, now I would never go to Bangladesh for the weekend. You know what I mean? Like work to go somewhere for a weekend. But it was worth it, you know, you You definitely got to see things and get a taste of it. So afterwards I tried to tell myself, you know, even if you don't have a huge chunk of time to go somewhere still go, if you can, and, you know, to see the world and everybody was friendly, I don't think I had one time where I felt like somebody that's, you know, rude or aggressive or unwelcoming. And I think that was a very wonderful experience too. Because sometimes I think we can kind of become afraid of going places or being with other cultures and being there in person in so many different cultures. And having everybody be so warm was was phenomenal.

 

Stacey Simms  28:34

Did you learn anything at that time about managing diabetes? Because you you I mean, I know you're stripped down, but you had your diabetes supplies, but I saw the show you're testing while you're driving. I mean, you know, to some extent, you don't have all the stuff you know, you don't you're not sleeping, right, you're not eating right. And I'm just curious, I think sometimes with my son, he'll go and forget something and muddle through when he learns from that. And even though we have all this wonderful technology, he kind of has learned that he can make it work. You can always MacGyver something. I'm curious if you had that experience.

 

Dr. Nat Strand  29:03

That's the word I was just thinking. I mean, any type one becomes, you know, kind of a MacGyver where you're learning how to, if you need to draw and slip out of an old reservoir for a new wine or you're learning how to reuse parts of an infusion set because one part ripped off if you don't have enough to replace the whole thing, or you're learning how to keep insulin cold or you're learning how to package things. They don't take as much room by taking them out of their packaging and putting them in a Ziploc, you know, all together, I think, you know, I remember even the test strips, you know, opening the test strip bottles and filling one bottle with two bottles worth of strips just to save space. So, you know, you kind of by force have to get very creative with faith and efficiency and also problem solving. So yeah, I learned a lot about traveling with diabetes. And you know, one of the things I did was I typed out a letter that said I have type 1 diabetes. In case of emergency please help me get sugar or please You know, I'm getting 200,000 to a hospital and I printed that out in several languages. So, you know, if I found myself in Russia, for example, and didn't know how to say what I needed, you know, I would have that kind of to give. So I think, you know, just learning how to prepare, you know, anticipate what problems you might have, or where you're going, and then, you know, trying to bring the selections with you as possible. That was definitely a skill set that was honed,

 

Stacey Simms  30:24

that's a great point. We were in Israel A while back. And, you know, we were on a guided tour, and everyone spoke English. But at one point, a guy wanted to take my son's medical bag to examine it, and he didn't speak English and then he figured out what was going on your tour guide kind of spoke to him and he was like, Oh, you know, kind of funny exasperated, like, come on, make this simple for me. And he wrote out this is a medical bag in Hebrew, and attached it to our bag. He was like, here Now you won't have any other problems like what's wrong with you people? Why couldn't you just do that to me? He was very funny back to us, like, you know, nicely exasperated with us, but I think in the future, that's Something that is just very helpful. You know, this is a medical bagger. I have type one diabetes in different languages. That's great advice. So I mentioned you have two children. Now you have I was gonna say toddlers, but you have preschoolers, right, five and four years old. You mentioned c sections. I'm not going to get all personal about type one pregnancies and that sort of thing. But when you were diagnosed at 12, I doubt you were thinking about children at the time. But you know, as you were getting older with the diabetes diagnosis, did you think about children? Was this something that you thought might be difficult or not possible with type one, or was it always in the plan?

 

Dr. Nat Strand  31:32

You know, I actually, again, sitting with my adventurous plan for life. I wasn't one of those girls that really thought I would have kids. I never really thought about being a mom and stuff like that. I kind of was more thinking about how I was gonna travel the world. And so, I mean, we had all seen Steel Magnolias. And so I think, you know, I had this awareness but at the time, you know, I think it was more of an awareness that that movie was wrong. I think I thought it would be fine. If I had wanted Kids. And then once I got a little older, I met my husband, we got married and I started, my switch flipped and I was like, I need children. And then I was like, Okay, I started getting into the details of, you know, diabetes and what the control needed to be and what the risks really were. And, you know, that I think was overwhelming. I think, you know, type one pregnancies, it's definitely a full time job. It's not regular diabetes management is like, very, very intensive diabetes management. So I knew that people would type one could have kids, I just didn't know if I could do what it would take to be that strict for that long. You know, so I think I, I pleasantly surprised myself that I could, you know, I think when the stakes are there, you do your best. But you know, I think there are different personalities, obviously, that have type one and my brother also has type one, he was diagnosed in his 30s and he's very mathematical. He's got an engineering mind and I think Not that anybody is well suited for diabetes, but if someone was to be well suited personality wise, he is, you know, he is regimented. He charts everything. He stacks his thing. You know, he's like that, and I'm the opposite. I became like him when I was pregnant.

 

Stacey Simms  33:14

So speaking of your kids, though, you you know, you've said you've been doing mostly at home consoles for your work. I assume that for the last couple of weeks, at least you've been home with your kids, maybe more than usual. How's that going?

 

Dr. Nat Strand  33:28

Well, you know, I think that everybody will look back on this time with different different experiences. Some people are bored and they've organized every room in their house and they make all these new recipes and I will look back on this time and remember what I had a three to five year old, who didn't have anywhere to go and any preschool or any day until my house apart all day long every day. My couch cushions haven't stayed in place for more than 20 minutes of full time. I mean, it's just crazy, but it's gonna be exhausting. I mean, they're like feral animal. But it's been cool to see them develop their relationship. You know, they're they're playing together from sunup to sundown. They're imagining things. They're making no jungle. So it's been nice to see them spend some time together, but certainly be at home with two young kids and nowhere to go. That's not for the faint of heart.

 

Stacey Simms  34:26

I salute you. Before I let you go. I know as you've said, you you're not in the ICU right now you're, you know, you're not seeing patients with COVID-19. But as a person with type one, I assume you're trying to stay on top of the medical literature and, you know, seeing what this may mean for people with type one who who get it who catch it who are at risk. Can you talk a little bit just either you know, your thoughts for yourself advice for the community? I'm just curious what's going through your mind on

 

Unknown Speaker  34:52

this these days?

 

Dr. Nat Strand  34:54

Well, you know, when they when it first kind of came out, I was reading a lot about what had happened in China. And also in Italy. And when I thought it was I kind of assumed it was type two diabetes, you know, because we were seeing a lot of age related and comorbidities. But you know, we've now seen with position statements from like the a DA and the jdrf, you know that they're not really differentiating type one and type two. So, you know, I know for me that my risk of catching this is not hired because of the diabetes, but my risk of a more negative outcome definitely is higher because I live with diabetes. So, you know, the way I look at that is I'm doing all you know, the recommended social distancing, masking thing at home, those kinds of things. And at the same time, I'm using this as an opportunity to really focus on all other aspects of wellness. You know, I'm kind of re engaging to bring my diabetes control into a tighter range because I know that's helpful. Now, as far as like rest, nutrition, exercise, all of those things are sort of, you know, you can think of it as like prehab instead of rehab, you know, what you can do before you deal with something to make you as resilient as possible. Physically. So I would just say, we know our risk of getting it's not higher, but our risk of complications if we get it is higher. And that's something that I think we should not let us talk on a topic from a place of fear, but rather from a place of preparation, and using that knowledge to just, you know, get our diabetes under the best control possible. Whether that means, you know, changing to a pump, or getting a CGM, or just re engaging with your endocrinologist or CDE. And then I think making sure you consider all other aspects of wellness to this to make you more resilient, which is, you know, nutrition, rest, stress management and exercise. So, I think we can use this knowledge to just put ourselves in the best position possible. A great defensive is really the best offense in this case.

 

Stacey Simms  36:42

Well, thank you so much for talking to me for sharing your story. And for just giving us a little bit of an insight into the medical community these days. I really appreciate it.

 

Dr. Nat Strand  36:53

Oh, and thank you so much for having me. I mean, like you said, I followed you on social media for so many years, and it's just an honor to be included on your project. Cast and thanks for everything that you do for our community. We all appreciate it very, very much.

 

Unknown Speaker  37:10

You're listening to diabetes connections with Stacey Simms.

 

Stacey Simms  37:16

That was so nice of her to say that at the end, it's funny, isn't it? The diabetes community, you know, we all kind of know each other from social media, or, you know, we've maybe we've met at a conference, but there's a lot of mutual admiration out there. It's always nice when people say that, but you know, as you listen, it makes me think if for some reason you feel like you're not really a part of this community, you know, maybe you listen or you're lurking in the group, and you've never reached out you're wondering if you know, what's it like, it's great. definitely reach out, definitely jump in. I mean, if you if you're fine, and you just want to listen, that's awesome. But we're doing a lot of really fun stuff in the Facebook group with zoom calls and surveys, and I'd really love to see you there and I really want you to know as you listen that your voice is really important too. So I'll link up more about Dr. Strand and her study and other information that we talked about in the show notes there's also always a transcript there at Diabetes connections.com And up next is tell me something good which is all from the Facebook group this week love it. But first diabetes Connections is brought to you by Dexcom. Now we have been using the Dexcom g six I looked this up it is two years now. We did a goofball video two years ago a little bit over Actually, it was the night that Avengers Infinity War came out and that's the night that we slept on the G six for the first time and we did a facebook live in for Benny wanted to do it but he was also really reluctant because he wasn't sure if it would hurt. So I will link up that video but I will tell you when I looked it up where to start because it's like an agonizing 10 minutes before he does it. But you know, the Dexcom g six FDA permitted for no finger six for calibration and diabetes treatment decisions. You do that to our warm up, the number just pops up. And after so many years of the previous dex comes we had to calibrate a couple of times a day you know you wouldn't get any blood sugar readings till you did so. It's amazing. We have been using the Dexcom for almost seven years now and it just keeps getting better. The G six has longer sensor were now 10 days and the new sensor applicator is really easy to use. You'll see on the video he was shocked, you know no pain. Of course we still love the alerts and alarms that we can set how we want. If your glucose alerts and readings from the G six do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

Tell me something good this week a bunch of great I'll call them little stories from our Facebook group. Last week I talked with these big athletic accomplishments, right, the Appalachian Trail marathons, but this week was a little different and I think these are worth celebrating as well. James said AP exams were easy on accommodations this time simply allowing students with type one, double the time so they could test treat etc during what was already A weird testing cycle. That is good news. Samantha says we sent out birthday cards to any kid among our friends that had a birthday this month since they can't have a party. And that was really fun. Her husband and her son are training for the new virtual jdrf ride. And they all just signed up for the Disney run again in January. She also wrote we are all alive. I see you, Samantha, that sense of humor. And speaking of the ride, Elizabeth wrote in that the reimagine jdrf my ride is good news. And she'd like to see me talk about the new program with one of the managers we have that in the works. I'm going to be talking about that. So the jdrf rides in person for the fall, unfortunately, were canceled, which I think was the right thing to do. But you know, there were a lot of people who really enjoy that and we're banking on it, and we're already fundraising. So jdrf my ride is a way for people to participate, even though they can't travel to these locations. I will put more in the show notes on this, but I will also be doing hopefully, a whole podcast on it soon. You're off Emil Altman, who is part of the Facebook group wrote in I don't know if this is what you're looking for, but I will be hitting 39 years of pumping the second week in June, and I hit 23 years of CGM use in March, he will mark 59 years with type one in November. I had him on the show a while back. He was an early adopter of diabetes technology. In fact, he worked in the industry for a while. So really great stories from him. Perry who lives with type two and is in the group. I'm always happy to see him. He said that his dad survived heart surgery that he is needed since March and finally had the valve repair last week, which would have been early May. Perry works with the fire department in South Carolina and he says good news. My crew has not liked masks gloves or hand sanitizer. And I gotta say, this is my favorite of the week. My dear friend and Sutton who is also the Outreach Manager for our jdrf is so creative, trying to keep people connected online. And she created two events for children who you know aren't able to meet up right now because we do a lot of that in our area. So she created And this isn't just for girls. And it isn't just for boys, anybody could go to anything. She created a tea party, a virtual Tea Party, and she created a virtual Lego build. And I'm going to share the photo of one of the kids built a meter out of Legos. And it's unbelievable. It looks so good. So I'll be sharing that and I hope you check it out really good and creative stuff. Do you have a Tell me something good story it can be. I think this is a great example of what I would call you know, these smaller stories, but still big accomplishments. Good news in our community. I mean, if you running a marathon or you're celebrating 59 years with type one, we want to share that too. But I just love this segment because it gives us a glimpse into the good stuff that's happening. You can share it in the Facebook group or you can ping me Stacey at Diabetes connections.com and tell me something good.

 

Before I let you go tell you a story about something bananas that happened in my house recently and I think this might be the first chapter in my novel Next, The World’s Worst Diabetes Mombecause that book stops really right in the middle of middle school. And it's not as though we haven't continued to make mistakes. So I will tell you the punch line first in that everything is fine. Benny is fine. It's all good. But what happened was, he had had a day, just one of those Perfect Storm days where the decks calm had expired, I accidentally left his pump off. And of course, a few hours later, he was a very, very high now I since COVID-19, and we've been around each other so much. I've actually been less on him than I think I have been any time in recent memory. his bedroom in our new house is upstairs. Mine is downstairs, which is totally new for us. We have control IQ with the tanta pump, which has been a dream and he's doing really really well. But you know, things happen. So it's about six or seven o'clock at night. He realizes he's having the pump issue. Of course he didn't have the decks calm. So you know, we didn't know that there was an issue for a lot Longer than we would have otherwise, we did a blood sugar check and it just gives you that high, you know, there's no number associated with it. And, of course, we did all the protocol you're supposed to do. Huge shot, you know, gave him the correction by injection, change the pump inset slapped on the dex calm, drank a ton of water and checked for ketones. And I went downstairs because Ben he never has large ketones. I mean, in all of his years, he's had medium once I'm not would not get anything I can get. But you know, he's been high for a sustained amount of time through illness or just wackiness or you know, dumb stuff with diabetes, and he's never had large ketones, but we still do check because I just don't want to get lulled into complacency, right, people change things go I just I don't want it to slip. So he texted me and he said, Mom, the keto stick is black, which we've never seen before. So of course, I run upstairs and they look at it and it is it's super dark purple. So I'm like, Alright, well, you just had the injection because it's a urine stick. It's probably a couple hours behind. Drink a ton of water. We'll monitor From here, if in two hours, we still get a really dark, large ketone reading, we'll call the endo and he'll walk us through what to do next. Okay, so I'm freaking out, right? I'm thinking to myself, why don't I have a blood ketone meter? What's wrong with me? I'm the worst. Why don't I have so I'm online, I'm looking for blood ketone meters, you know, like, How fast can I get one and we just, you know, we, we've never had the need, so don't yell at me. Then two hours later, blood sugar is coming down nicely, he's feeling a little bit better, right? Things are gonna be fine. And I sit in his room and he goes to the bathroom and it comes out and he's like, wow, it's still really dark. And I look at the strip

 

Unknown Speaker  45:33

and I noticed it looks really weird. We use the regular old keto sticks that have little square at the end, and it just has one square.

 

Unknown Speaker  45:41

this stick

 

Unknown Speaker  45:42

has two squares, and one is dark purple, and one is light pink. I thought

 

Unknown Speaker  45:47

to myself, what

 

Stacey Simms  45:48

the heck is this? So I look at the bottle. And if you know you've already know what happened, I had purchased diagnostics. These are sticks that measure glucose and ketones and The dark purple was the glucose hidden of large ketones. He had small ketones, maybe medium, maybe. So for, you know, big sigh of relief, and that was it. But oh my gosh, I was flipping out before that. So now we know now we have to be more careful. But that's the next chapter. I've already got The World’s Worst Diabetes Momstuff ready to go? Never a dull moment. All right, a big thank you to my editor john Lucas from audio editing solutions as always, for helping make sense of a lot of my nonsense. Thank you to you so much for listening. Don't forget about the book to clinic program. If you want to jump in on that or you know, a clinic that would like to get on the list to receive books. I'd love to hear from you as well. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Unknown Speaker  46:52

Diabetes Connections is a production of Stacey Simms media.

 

Unknown Speaker  46:56

All rights reserved. All wrongs avenged

 

Transcribed by https://otter.ai

 

Chris Wilson helps run some of the largest diabetes technology groups on Facebook. He's also always on the lookout for the latest news from these companies and very involved in clinical trials.
Chris also shares his diagnosis story, inside scoop on Facebook groups and even talks about bowling in sandals. Yikes.

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

In Tell Me Something Good, a middle school 3D printing class helps out a 9 year old with type 1 and a running event goes virtual & big

Join the Diabetes Connections Facebook Group!

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

Sign up for our newsletter here

Check out Aaron Kowalski's virtual run Twitter thread here 

3-D printing club news story

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Episode Transcript 

Stacey Simms  0:00

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

 

Announcer  0:21

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:27

This week, Chris Wilson helps run some of the largest diabetes tech groups on Facebook. It turns out he's also very involved in clinical trials. This one for a new emergency glucagon,

 

Chris Wilson  0:39

kind of an interesting experience. They hook you up to IV and so on and push your blood sugar down, I want to say under 50 and then turn off the IV and give you the injection and watch what happens.

 

Stacey Simms  0:52

Chris tells us more about participating in trials. Staying on top of diabetes news and bowling in San Jose. Tell me something good. A Middle School 3d printing class helps out a nine year old with type one. And a running event goes virtual and big. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

 

Welcome to another week of the show. I am so glad to have you along. I'm your host, Stacey Simms. And you know, we aim to educate and inspire about type one diabetes by sharing stories of connection here. How are we doing these days? I gotta tell you, I'm having good days and some rough days. I think like everybody out there. I don't know. I feel like I'm not doing enough. Right? I have this weird feeling some days where it's not like I'm not doing enough in my house, which I am not because we moved to a new house at the beginning of March. I know great timing. And so when I tell people that they're like, Well, you've had so much time to set things up and get organized. I kind of Yeah, I guess We haven't really jumped right in and set everything up the way I think we might normally do. We certainly have the time. And many rooms look very nice. Many rooms still have stuff in boxes. Because I don't know, there's there's some days where I have a lot of urgency. And I feel very efficient. There are some days when I lie on the couch and watch YouTube all day. So I'm trying to be kind to myself, like I always advise everybody else to be, you know, I don't think this is very unusual. There are some people doing amazing things out there. I mean, I don't so, you know, I'm trying to figure out what I can do. I'm trying to serve the diabetes community, certainly, but you know, I think we'll find ways to help as we move forward here, certainly in my local community as well. But I was talking to my kids about school. My daughter was concerned about the number of credits she was able to register for, I mean, long story short, like a lot of colleges out there. They're making some changes they're adjusting. No decisions have been made yet, but the way that people registered for classes changed a little bit. And so she was really concerned about Getting the number that she wanted as an incoming sophomore. And I said to her, you know, why? What's the big deal? Because this school year may look totally normal. Everybody may go back to college, everything's fine. You know, who knows? It may look extremely different. Nobody goes back to college, they continue online learning or they get there and things change. I mean, who knows what's going to happen this fall? So all we can really do is act like it's going to be, quote, normal, register for the classes that you can, but expect the unexpected and realize that, you know, maybe you'll take some summer classes. Maybe you won't graduate in exactly four years, which horrified her you she's a very good student. And I was able to say to her look, did you have big plans for 2023? Yes, she's not on a set schedule, which kind of made her laugh, but also made me realize I've got to be more kind to myself, too. I mean, the podcast is not getting out on Tuesdays, like clockwork, as it has been, and I very much pride myself on that schedule. I think it's Hey, to let these things go, right. I mean, we want to come out of all of this with our mental health as best as it can be. And if that means tonight, I need to watch the what's up with that skit from Saturday Night Live on repeat, because and if you haven't seen this, I'm not really into Saturday Night Live lately, but I saw the one from home. I laughed so hard at the what's up with that, and I couldn't believe it was an ongoing sketch. It's so stupid and so funny. And it was just remarkable. And the one with Zach Galifianakis where he's playing the flute, I'll link it up in the show notes. That's how much I left and it's so dumb anyway. But if that's what I need to do that night, I'm going to let myself do that. So a long way of saying, I hope you're hanging in there, I hope you're not being too hard on yourself. For You know, when we went into this, we all thought I'm gonna organize my house and I'm gonna work out every day and you know, there are people doing wonderful things, but it's okay to do ordinary things and be there for each other and just come out the other side of This was a feeling that we made it through. I keep reminding myself we're doing something important by staying home. Right. That's how we're helping. One thing that really has helped me a lot through this is doing some of these live events and chat events and just the zoom calls. I've been doing a bunch lately, had a lot of fun last week doing the world's worst diabetes parent meetup. That was amazing. Thank you Project Blue November for letting me do that on your page. We got a great group chat with some parents told our mistake stories and gave away some books gave away some amazon gift cards. I'm doing stuff this week with the college diabetes network. And of course, I will be doing the 300th episode taping. As you listen, that will be Wednesday. So I believe this episode is going to be coming out either late Tuesday night or Wednesday morning. So Wednesday, April 29. I will be live on Facebook answering your questions and talking about the diabetes community in June of 2015, which is when I launched the podcast holy cow So that's the episode 300 taping. Okay, all right, getting to Chris in just a moment. Diabetes Connections is brought to you by real good foods. And last night Ben he came downstairs and said, Hey, do we have any ice cream? And we're at the point of this where we have quite a lot of ice cream we have, but we didn't have what he wanted. We had like regular I think my daughter had some Ben and Jerry's. We had some mini ice cream sandwiches, but he wanted the real good foods ice cream that I've talked to you about. And I said, I think maybe there's some in the garage freezer and he went and looked and there wasn't any love, so I have to order some more. And as I'm looking right now there is a sale 20% off on their ice cream, so I forgot to get Benny's order today. He really liked the peanut butter. They have the super premium peanut butter chocolate chip ice cream is so delicious. I happen to be a big fan of just the chocolate and my husband likes the mint chocolate chip. We didn't try the salted caramel list. I'll have to put an order in for that. This ice cream is so tasty. It's not like that. A lot of lower carb ice creams, you know that chalky kind of chunky weirdness that you can get sometimes, but this is, as they say, a real ice cream experience with real ingredients, low sugar, 200 calories per serving, they list all the ingredients online so you can read everything that goes in it. And of course, when they ship it to you, they ship it in a cooler with dry ice when we got our first shipment of ice cream. It had we're in North Carolina, we're in Charlotte where it's already warm. I know it may have just snowed where you live, but it's been beautiful here and when we got our first shipment, the ice cream is frozen solid. They do such a great job free shipping on orders over $50 just go to diabetes, connections calm and click on the real good foods logo.

 

My guest this week is well known to a lot of you who are on Facebook, or maybe his profile picture is you may not actually know too much about him and that's why I'm talking to him today. Chris Wilson is one of the admins for two very large closed Facebook groups. We're talking thousands of people in these groups all about tandem and Dexcom. Well, if you're not familiar, and I know some people still aren't on Facebook or have left, you know, an admin is somebody who may have created the groups, but is always there to make sure things run smoothly. They can add or remove people or kick you out for bad behavior, that sort of thing. I run two groups on Facebook, and it's a lot of fun, but it can be a lot of work. And Chris always seems like he knows an awful lot of behind the scenes stuff. He doesn't work at tandem or at Dexcom. He gets asked that a lot. And we also talked about his clinical trial experience. I didn't realize like he had so much to say about that was very interesting. So here is my interview with Chris Wilson. Chris, welcome to the show. Thank you so much for jumping on to talk to me. I really appreciate it. Well, thanks for the invite Stacey. You know, it's one of those situations where I feel like I know you because we talk on Facebook all the time and I see your posts and you know, I read the valuable information you provide And then

 

Chris Wilson  9:00

I realized as we were recording as I, as I hit record, I don't really know that much about you at all. I'm not sure I've been less prepared for an interview in a long time. So I appreciate you writing this out with me. Well, I mean, that's kind of the the nature of the the online community is we interact with people, you know, we get to know them, at least in one aspect of their lives, but somebody that you've never met in person, you never had a chance to sit down and have a drink with or whatever. So,

 

Stacey Simms  9:29

well, I'm gonna start with a very hard hitting question. I did my research and I looked you up on Facebook. And it was very difficult because we're already Facebook friends, but it does say the last time I wore shoes was January 2015. Is that true? And if so, what's with the not wearing shoes?

 

Chris Wilson  9:47

That is true? It just sort of I mean, I wear sandals.

 

outside the house, it just sort of happened by accident. My job's done. don't require me to, you know, wear close toed shoes or anything I live in Southern California on a really cold night in the winter it might get down into the 40s there's you know, no real need to wear close toed shoes and insulate one's feet.

 

Stacey Simms  10:18

All right, okay, so I have a much better mental picture of your day to day life. No close toed shoes do formal wear. You're not going to the office with a briefcase.

 

Chris Wilson  10:28

Right? I even actually have a pair of custom made bowling sandals that I use for bowling.

 

Stacey Simms  10:33

You do not you? I do. Can you post a picture of that when we do the when we hear this? Because that just sounds like you never got hurt wearing them

 

Unknown Speaker  10:42

now. Oh, man. That's funny.

 

Chris Wilson  10:47

Well, when I had the idea to do it, because bowling was at that point, the only time I was wearing shoes, and I sort of had the idea of Hey, I could you know, take the soul off of these a tournament a bowl of cheese, replace it with a bowling soul and be Half of my friends said, Oh, that's awesome. And about the other half said, That's the dumbest idea I've ever heard in my life.

 

Stacey Simms  11:07

Well, now that I know you're not getting hurt, I'll refrain from commenting, but I'm what my initial reaction was. Okay, so we're going to talk bowling, we're going to talk all sorts of stuff. But let's start with diabetes, which is really kind of how we know we found each other. Certainly, Tell me your story. When were you diagnosed?

 

Chris Wilson  11:26

I was diagnosed my freshman year of college. Oh, wow. I had and I was probably starting to really get the beginnings of symptomatic as I was leaving for college. But you know, you go away in August and I went to school 3000 miles away from my parents on the other side of the country, and so no interaction with them. You know, they didn't see me for anything like that. And I started losing weight in the classic symptoms thirsty all the time having to go to the bathroom all the time, but you never crossed my mind that something that could be diabetes. This lasted all the way until Thanksgiving. I went to go see my grandparents for Thanksgiving. And my grandmother took one look at me and said there's something not right with you. My grandfather was type two. So he had a meter and two mornings in a row, they prick my finger and got readings in the three hundreds. And I went to calling the advice nurse for my health insurance and said, you know, hey, what should I do? I'm from California. I'm in DC going to school. Right now I'm in Pennsylvania, my grandparents house and they said, stop whatever you're doing, do not pass go do not collect $200 get yourself to the nearest emergency room. When I got there. Actually, the meter wouldn't even read. They had to send my blood to the lab to get a blood sugar reading and it came back at almost 1000 milligrams per deciliter. And I was well into DK And the doctors looked at me and they said, We can't explain how you're alive, let alone conscious. Oh my gosh. And so I got to spend a couple of days they actually sent me to the pediatric ward even though I was an adult, because that's where all the people that knew type one were right. So I spent a couple of days in the hospital there my my mom flew out to come and collect me and they taught me how to give myself shots and prick my finger and everything else. And then after that, I went back to school when finished out the semester.

 

Stacey Simms  13:32

Okay, I have a couple of quick questions for you. Do you remember what it felt like when you got your first dose of insulin? I've heard that that's just an amazing feeling after you've been feeling lousy like that for so long.

 

Chris Wilson  13:43

Oh, it is it's you can almost like feel the the ketones leaving your blood is sort of the the way that I think about it. almost feel like pins and needles inside as things get really bad. And if it's happening slowly and building up, you don't necessarily feel it acutely. You just sort of build up a tolerance to it when they started me on the insulin and everything else it was just like this weight was lifted and I didn't even realize how bad I had been feeling until I felt better. Yeah, that's amazing. I

 

Stacey Simms  14:14

you know, obviously not living with diabetes myself I don't have I can't I can't relate to that at all. But I can only imagine how much better you must have felt. But then to go back to college, what was that transition? Like? Because I assume your mother did not move into your dorm

 

Chris Wilson  14:27

always wanted to? She did not. She made me tell my roommate and all the other people on my floor. What was going on? Some of them or were actually like oh, wow, cool. You know, you get syringes and stuff. It's almost like we're living with a druggie. Lots of joking about it, but at least the first couple years actually, it was almost like an extent I had a really long honeymoon phase. And so I didn't even really need it. You know, I gave myself the insulin and I ate when I was starting to feel hungry. You're low and didn't really even think about you know, managing intensely or correctly or the way that we do now. It was just okay this happened. We'll we'll deal with it. And

 

Stacey Simms  15:15

and when when was this What year was this? If you don't mind me asking? This was 1997 Okay, so before certainly before CGM, and well before a lot of people even had an insulin pump,

 

Chris Wilson  15:25

right he will log was I believe brand new at the time.

 

Stacey Simms  15:29

It is wild to think about that stuff. I mean, Lantus had just been approved pediatric Lee when Benny was diagnosed, we thought Wow, this is so cool. We get to use this new insulin that just got approved. You know, it was really it's amazing when you look back on it. When did you start getting interested in technology and I say it like this because I assume you are pretty interested since you run these these groups now on Facebook.

 

Chris Wilson  15:50

I didn't pay too much attention to it because for the longest time, I was surviving uninsured haha and the over The counter Rnm I actually couldn't get to a Walmart. There wasn't a local Walmart. I was getting it from CVS in the basement of the Watergate hotel, if you believe that. That was the the local CVS. Wow. And that was just, you know, kind of what I knew. I mean, even at that point, anything newer than that, the more modern analogs and stuff like that was just prohibitively expensive without insurance. So I figured that out, I figured out you know, which meter had the cheapest test strips that I could could get and I didn't test nearly enough wound up in it DK and hospitalized briefly, once during that time, although not entirely due to the insulin regimen. My parents had come to visit me and I, being a impetuous college student got mad at them and decided I was going to take a road trip so I hopped in my car and drove to Florida from DC without any insulin. By the time I got back, I was feeling pretty awful and went and checked myself into the yard.

 

Stacey Simms  17:00

I feel like I want to say something. It's funny, Chris, as a parent, I'm, you know, I hold my breath when I hear stories like that, but as someone who's talked to people with diabetes for a long time now, so many people have done things like that it's just life, you know, and if you as you're listening you're I could never imagine, you know, things happen, right? It's nobody's perfect. So I'm glad you were okay. That is kind of scary.

 

Chris Wilson  17:24

Well, I wouldn't do that now. Oh, of course. I know. I know a lot better. Now.

 

Stacey Simms  17:28

Of course, when were you able to get insurance and then to get you know, a pump or CGM and everything that you have now. Right back to Chris in just a moment, but first Diabetes Connections is brought to you by One Drop and getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test trip plans, plus you Get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions are Kobe's required. One less thing to worry about not that surprising. When you learn that the founder of One Drop lives with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to diabetes, connections comm and click on the One Drop logo. Now back to Chris talking about when he was able to get coverage for what he really needed.

 

Chris Wilson  18:39

It was with the ACA when in fact, I had actually looked at insurance options briefly and the one insurer in because I've moved back to California by this time, the one insurer in the state that would even offer me a policy quoted me a premium that exceeded my gross income once the ACA went into effect and they couldn't raise the premium Just because I had type one diabetes, all of a sudden it became an option and you know, we went through the the standard of Okay, we're not going to do the the regular the mph anymore, we're going to get you on lattice and get you on human log. And after trying that and tweaking things here and there and figuring out what worked and what didn't, and they decided that really, my basal needs fluctuated so much throughout the day that I needed to, to be on a pump. Then after I was going through, I don't know 1015 test trips a day cuz I was testing about once an hour, trying to catch the spikes and dips and figuring out where things were. And I was regularly having my blood sugar dip into the 50s and 40s without feeling it. At that point, my endocrinologist looked at me and said, You know what, we should probably put a CGM on you. Hmm.

 

I said, Okay, yeah, let's let's do that.

 

Stacey Simms  19:58

What did you think? When you got on Dexcom,

 

Chris Wilson  20:01

my first thought was, oh my god, this is amazing. I can actually, you know, see, maybe not quite in real time but basically close enough what's going on and where I need to make adjustments to things that are crucial say, you know, make knowledge your superpower. And then a lot of ways it really is. And that kind of actually dovetails in with my job because as an IT consultant, I do a lot of working with data and data analysis and stuff like that, and actually having enough data to be able to analyze it and then make changes based on it. Yeah, was almost a perfect fit.

 

Stacey Simms  20:40

So how do you get from being you know, a regular guy, work for yourself and you're on a pump and you're on a CGM, taking care of yourself. You're doing well to suddenly having thousands of people in these Facebook groups where you big Facebook guy from the beginning?

 

Chris Wilson  20:54

Well, I've actually been on Facebook. Basically since there was a Facebook. I was in college. We were, I want to say the fourth or fifth school to get Facebook. That was number one was obviously Harvard, that Stanford was second. And then they started expanding to two other schools. And where did you go to

 

Unknown Speaker  21:15

college? I don't know that you said it

 

Chris Wilson  21:16

was it was George Washington University. I see.

 

Stacey Simms  21:19

That's funny. I mean, I went on, I got on in 2008, which I thought was really early. If you go, there's no record of that. Because long story short, I messed up my Facebook when I left my old job at the radio station, and went from like a friend to a pub, whatever I did, I messed it all up. But I was on in 22,008. And I thought that was early. But oh my gosh, you've been there really? Since the beginning?

 

Chris Wilson  21:40

Yeah, I want to say it was like 2001 or two, when it was the Facebook when it was the Facebook. My endocrinologist actually had encouraged me to when I was even just starting to research pumps, and then CGM and the other things. I was encouraged to go online, find user groups, do some research. So I joined initially the the tandem t slim pump group. And as I got better at using it and more familiar with it and figuring out how things worked, and at least the best way to do things for me, I started answering more and more questions. After a few months of that, I think one of the, the original admins of the group asked me if I would be willing to help out with admitting and you know, making sure people didn't do things that violated the rules and answering questions and stepping in when incorrect information was given out, and that sort of thing. So that happened, and not too long after that happened. Then, when the G five came out, one of the admins of that tandem group started the G five CGM users group. She sort of tapped me to come in and help out with that. So that's sort of how I wound up there. I mean, both of the groups have have grown significantly since then. It used to be that we, you know, let anybody post whatever they wanted pretty much. It that's, you know, had to be clamped down on somewhat just to keep things orderly.

 

Stacey Simms  23:12

What's the what are some things that people should know about Facebook groups? Like, is there anything that's kind of behind the scenes stuff that would help us either post better or use them better? Or they just drive admins crazy.

 

Chris Wilson  23:24

One of the big things that that gets me at least is Facebook is not Twitter. There's no character limit. You don't have to cram whatever question it is that you're asking her describe the situation in 140 or 280 characters or less, you know, by all means, use lots of words be as descriptive as possible, because sometimes in there, there's a little curl that have a little nugget that gives away what the actual source of the problem that person is having is the other

 

Stacey Simms  23:56

thing that was really interesting. We saw this so much with control IQ When it first came out was people don't search the group to see if their question has already been answered. I mean, I run to smaller groups, and they're usually really great. But that's kind of drives me crazy.

 

Chris Wilson  24:12

It used to be, it drives me crazy less, because I've just kind of learned to shrug it off. In large part, it's a function of just the way that Facebook's algorithms and ranking in the way that it orders the posts that people see works. Facebook's always trying to get the most recent stuff up at the top, or the stuff that it thinks you might be most interested in based on stuff that you've interacted with in the past. And there's, I'm sure tons and tons of algorithms and things that go into deciding what you see and when. And it's not even intuitive, especially looking at it on a phone or on tablet versus on the desktop website. There's even really a search to group option in a lot of cases. And there are Tons and tons of people that do search that that's one thing. But the people that do search, almost never actually post a question because they get their answers by searching the group. So those are the people that that we frequently interact with. It's you know, and you, you wind up seeing somebody posts a lot, because they've never realized that there's a search function. Good point.

 

Stacey Simms  25:24

So when control IQ came out, and this is particular to the tantum group, like hundreds of people, thousands of people, it seems like came into that group. Was it that many or is it just, you know, I'm sitting on the outside wasn't really that many people,

 

Chris Wilson  25:37

I want to say, because the group's kind of, you know, had a long steady growth. But I want to say for especially that few months when it was approved and not yet released, and then right after it was starting to roll out, there was definitely a spike in interest. We were seeing the group grow at almost three times the rate that it had been before that Wow.

 

Stacey Simms  26:00

So if you don't mind, let me ask you about your experience with control IQ because there's still you know, certainly a lot of people who haven't who have tanto haven't tried it yet. And there's a lot of people who've listened who haven't switched over to it, you post a lot of, you know, very publicly posted about your experience. How's it going now?

 

Chris Wilson  26:16

It's so going along, okay, I've actually backed off because, of course, when it was new, I'm paying attention to it all the time, right? I'm looking at it, I want to see what it's doing. I want to see why, you know, see if I can figure out why it's deciding to do what it's doing right now. Now, I've gotten to the point where I trusted enough that I frequently just let it go. And sometimes that means that I don't catch or foresee something that I would have otherwise. So my time range has dropped back down a little bit from where it was I'm not running, you know, 9597 90% time and range. It's closer to being in the low 90s still, but a slacker in all honesty The low 90s is fine. And my average blood sugar has come down significantly. And the biggest thing that I was anticipating getting help with from it, I'm still getting out which was gone phenomenon. I'm still seeing that improvement. I'm not as a general rule waking up at 180 or 200. Even though my basal rate doubles before I wake up, Wow, it's so definitely helping. And I've kind of decided I'm gonna let it go and try to be a normal user, not a someone who's focused on it all the time, and sort of see how that rides out.

 

Stacey Simms  27:38

I think that almost in a way, it's better. I think that and I have because I have a 15 year old son, who is very responsible. I mean, I don't want to put him it's gonna sound like I'm putting him down. I'm not he's very responsible. But truly being a person who really would prefer to never touch this pump again, has helped him so much because I know people who overreact everything and they're not doing as well with control like you He bonuses for food and then leaves it alone. And you know, four or five hours later, he'll be like, Oh, yeah, it's good. You know, he doesn't, you know, and I'm not I'm not checking him as much as I used to because he's a teenager. But it's amazing. When you would let it do its thing if your settings are right, which is a whole other story. It really works out great. So, you know, we'll see how it goes for you. But I think that you know, anything you can do to think less about diabetes is also very nice.

 

Chris Wilson  28:23

That's right, it gives you you know, more time to think about the other things in your life.

 

Stacey Simms  28:27

So let's talk about other things in your life. You're okay, so you bowl, you're an IT guy work for yourself. There's some surfing stuff in your bio, do you surf or is that a company that you work with?

 

Chris Wilson  28:37

It's primarily my biggest client is a nonprofit organization that focuses on ocean waves of beaches that includes access for recreation. So there's a lot of surfing related stuff there. I can surf I have served. I'll be honest wearing a pump and CGM is is not necessarily conducive to being out in the water recreating, I would need to figure out some sort of untethered regimen or something if I wanted to do it regularly, I can at least paddle out and catch a wave or two and not get tossed around too much. But actually, the the big surfing thing is comes from my dad. My dad who's now in his 70s, you know, started surfing when he was 15 or 16. And still goes out and in surfs, usually two or three times a week at least when he can when we're not all under house arrest.

 

Stacey Simms  29:38

Yeah. Oh, that's great, though. That's really cool. Do they live nearby?

 

Chris Wilson  29:43

They do. They live about a mile mile and a half for me. Oh, that's great. So how

 

Stacey Simms  29:47

is everybody doing? I you know, I I don't know exactly when this will air but I assume it was it will not be at a time when we're all running around outside yet. So how are you holding up?

 

Chris Wilson  29:57

We're all doing okay. The nature of my job is such That I can largely work from home. Most of the time anyway, that hasn't been a huge impact for me. My parents have figured out Netflix and zoom, and doordash. And so they're adjusting to their new restrictions, although they still do get out and walk around and make sure they get their exercise in as well. So

 

Stacey Simms  30:25

well, who knows what it's gonna look like on the other side of this. So we'll just do what we can. But one of the questions that you I've seen you answer in the groups and I want to talk about is, you know, people sometimes think you work for them, or you work for Dexcom and you don't, but you get a lot of really good information. Can you talk to us about what you do? You know, how can lay people stay up on information from these companies, because it's all public, I assume the things that you're looking into.

 

Chris Wilson  30:55

It is, none of it's a secret. It's just a lot of it isn't well publicized. I pay attention to every press release that the companies put out. You know, I have one of the stock tracking apps and I have it set up to notify me whenever any of the companies on my list put out a press release, and it's not just Dexcom in tandem, it's insolate for the Omni pod. Medtronic psionics. Basically, almost anybody in the diabetes space, I try to at least keep up with what they're doing. I listened to the conference calls that they have for investors.

 

Stacey Simms  31:33

I salute you, because I have been on some of those conference calls. And they are so boring, but they are they have great information, but they are a slog, sometimes

 

Chris Wilson  31:42

they can be most definitely and if it doesn't work out schedule wise that I'm able to listen to the call. Honestly, sometimes I prefer to go back through and read the transcript after it's done. There's that I follow the diabetes media. You know, I read everything that gets Put just about everything that gets posted on diabetes mind or diatribe, or any of the other publications that sort of track what's going on in the diabetes world. And well, I do have some friends that do work for those companies living in San Diego or near San Diego, where they're headquartered is kind of inevitable, but they don't share any inside info with me or anything else. It's just a matter of really paying attention. I'm curious why you

 

Stacey Simms  32:31

do that. What is it that makes you so interested? Obviously, you have diabetes, you were the technology, but most people don't

 

Chris Wilson  32:38

follow it that closely. I think part of it's just sort of the way that I brought was brought up, I have sort of the the engineering bent to and that goes again, with with the job, but, you know, I like looking at things and taking them apart and figuring out how they work and how they're put together. And that's not necessarily always a option with diabetes technology. Although obviously the, the we're not waiting, the CGM, the crowd group has has done a lot with reverse engineering, what goes into these devices and how they're communicating with the radio signals and figuring out ways to sort of hijacks some of that to use for their own purposes, in ways that the tech wasn't necessarily originally designed to be used. But I've got some of that same sort of inquisitiveness about how things work. I mean, I remember when I was eight years old, I took apart my mother's computer that she had at home to install an expansion card so that I could attach a joystick to it to play games. And I remember being told that man, if you put that to get back together, if it doesn't work, you're not getting your allowance for the next four years.

 

And you were eight and it worked. And I was about eight and it worked. was safe there.

 

Stacey Simms  34:01

It's funny. But that says a lot. Right about being curious about, you know, having a knack for things. And for having the I don't know, there's something different about people who take a look at technology and say, I can do that. It's like you said that like the night scout people in the DIY crowd to be able to look at something and have the confidence or just even the curiosity to say we can make this better. I think that's really admirable. I don't have that. There's no doubt I'm, I'm scared of it.

 

Chris Wilson  34:28

Well, a lot of it just comes down to looking at it looking at what is the data is going into it, looking at what the actions are, that are coming out of it and figuring out what must be happening in between those because you don't necessarily have any insight as to exactly what the system is doing. But if you input a two and it gives you a four, and then you input a four, and it gives you an eight, and you input an eight and it gives you a 16. It's probably just taking whatever the input is and multiplying it by two and giving you the answer.

 

Stacey Simms  34:57

When you look at the technology and I No that, you know, who knows exactly what timelines are going to look like after this situation that we're all in right now? What's coming that excites you down the road for diabetes technology, because there's a lot that's on the horizon.

 

Chris Wilson  35:13

I think the biggest thing that I see and it's actually sort of already here is the option to be able to infuse multiple hormones both insulin and glucagon. Now that we actually do have a shelf stable liquid glucagon on the market, that being the G voke. from Paris, I would assume that Zealand's product isn't too far behind that since that's what's being used for the for the island with beta bionics. So we should have two options before too much longer. Hopefully, just having the ability to not just take your foot off the gas, so to speak, but actually be able to apply the brakes is I think, going to be a major thing and then going along with that and something that I haven't really seen talked about too much is Lily's faster humalog which I mean, that's one of the big challenges is always that food is fast and then slow, the slow. And so anything that that can be done to speed up the insulin action to get it closer to what you would actually seen that happen naturally when your pancreas dumps that insulin straight into your veins, I think gonna be a big improvement.

 

Unknown Speaker  36:26

You mentioned g Volk. Did I read you were in one of the trials. Did you talk about that at some point? I did. I've discussed it.

 

Chris Wilson  36:33

From time to time I do various clinical trials as they as they pop up. A lot of the research gets done here in San Diego, and if nothing else is an option to get paid for having diabetes, which is nice to have happen. Once in a while. I did participate in the phase three clinical trial for for the G Volk, where they actually compared it to the standard glucagon kit to prove that it was of equivalent efficacy. That was Kind of an interesting experience, they hook you up to IV insulin and push your blood sugar down, I want to say under 50 and then turn off the IV and give you the injection and watch what happens. And the sort of the cool thing was that they actually didn't make me take off my CGM when I was doing it. So I saved and screenshotted the data from the days that I did both the traditional glucagon kit and then the, the product that they were testing the G voke to be able to look at and sort of compare the two, but doing that kind of stuff. And I also did the G six clinical trial, proving that it was good for 10 days if you wore it and also that it would block at least up to a certain dose of Tylenol.

 

Stacey Simms  37:43

Oh, that's interesting. I didn't realize you're in that trial too. Did they give you a bunch of Tylenol?

 

Chris Wilson  37:47

It was thousand milligram pill of kill of acetaminophen. They had as a saw, I want to say it was you know, 15 ish people and all basically crammed into a clinic room. IVs in so they could do blood draws every five or 15 minutes depending on what stage we were in of the of the testing. And they were running them through the lab grade glucose meters right there in front of us and comparing the readings from the CGM because we were all wearing both the G five and Digi six so they could compare the two. That's wild. And it was it was basically controlled chaos for about six hours.

 

Stacey Simms  38:28

Yeah, I've signed up any for a few you know, to get into some clinical trials. But here in Charlotte, North Carolina, we really don't have the access. We could drive to Virginia sometimes sometimes there's some stuff in the Raleigh area, you know, the Research Triangle, but and the pediatric ones are hard anyway, but we'd love to do one that's really interesting. I'm going to tell them about that thousand milligrams of Tylenol in one pill

 

Chris Wilson  38:51

which actually isn't too much more than the extra strength the normal extra rectangle

 

Stacey Simms  38:56

so Oh, wow. I used I thought it was like 200 milligrams in one And then so it would be five. But I didn't think that the extra strength oh my goodness,

 

Chris Wilson  39:04

well, if nothing else, I mean the the clinical trials also give you a chance to have testing done that nobody would ever pay for as a normal patient. They're looking at all kinds of stuff I've done at various stages of research trials for other things where they're looking at measuring your resting metabolic rate. And they've actually got a giant plastic hood that they put over your head to measure how much oxygen is going in and co2 is coming out. And based on that they can calculate how fast your normal metabolism is running. And they'll do it under various conditions where they're running extra insulin into you and extra sugar to counteract that insulin in an IV. Under normal circumstances, I would never do think it was 100 gram of carbohydrate challenge to see what would happen but I do Did a trial where they did it before and then after giving the medication that they were experimenting with to see what the difference was how high did your blood sugar peak? How fast did it come down? And nobody would ever do that. They're laying in the bed and they're practically doing blood draws and you've got your CGM on and you can see exactly how your body responds to various things. And it was actually kind of cool because if I had not done that trial, I would not believe that in score lasted five hours in my body. Oh, yeah. But because I did that, I've now actually got documented proof that I can show that no, like, here's where I had the hundred grams of carbs and gave myself the the bolus of insulin. And I could then watch as the blood sugar's slowly comes down and tails off. And that was six hours of measurements. Well, I

 

Transcribed by https://otter.ai

What happens when you're diagnosed with COVID-19 and you live with type 1 diabetes? It happened to Patric Ciervo in early March. Patric shares his story, including how his diabetes reacted, hospital issues with people who don’t really understand insulin pumps and how he’s doing now.

In Tell Me Something Good, a familiar name in the diabetes community, recovering from COVID 19 and now donating plasma, we salute more health care heroes.

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

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

Join the Diabetes Connections Facebook Group!

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Episode Transcription

Stacey Simms  0:00

Diabetes Connections is brought to you by one drop created for people with diabetes by people who have diabetes by real good foods, real food you feel good about eating and by dexcom take control of your diabetes and live life to the fullest with dexcom.

 

Announcer  0:21

This is diabetes connections with Stacey Simms.

 

Stacey Simms  0:27

This week recovering from COVID-19 while living with Type One Diabetes, Patrick servo was diagnosed with the virus. In early March,

 

Patric Ciervo  0:36

my temperature started going down like a 101 to five times 5am it was about a 93 I woke up in a puddle of sweat, we call 911. Fearing that I was going into some type of shock

 

Stacey Simms  0:50

Patrick wound up in the emergency room with a committed he shares how diabetes was managed issues with people in the hospital who don't really get insulin pump And how he's doing now and tell me something good a familiar name in the diabetes community also recovering from COVID-19 and now donating plasma and we salute more healthcare heroes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of diabetes connections so glad to have you along. I'm your host Stacey Simms, we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two back in 2006. He is 15 now and a freshman in high school. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get the podcast I used to work in local radio and television news. Before I jump in with Patrick a little bit of housekeeping, we are fast approaching Episode 300 This is Episode 298. I have never made a big deal about numbering episodes because I don't know, it doesn't really matter what order you listen to the show in. I do number them internally just for organization, you know, keep track that way. And depending on what app you use, I know Apple podcasts will number them, you can see it right there in the app. Depending on what you use, it shows up or it doesn't. But we do have a very robust search engine on the website. And that does not rely on numbers. You just search by topic. And for me as I listen to podcasts, that's how I want to find previous shows, right? If I want to look something up, I'm gonna put the word into the search. I'm not gonna remember Oh, that was Episode 212, or whatever. I bring the numbers up though, because at 300 episodes, a lot of podcast apps start limiting what you see, when we get to 301 or you know, 350 or who knows 400 You're still only going to be able to see 300 episodes in the app. I'm not quite sure how many people are scrolling through to see everything. I am putting something new at the website you should be able to with one click to see all 300 episodes something unfortunately we don't have right now, because frankly, it just takes forever to load. But watch for that at diabetes, connections calm, they'll be a way to click and see all 300 episodes, if you're interested in kind of going back and scrolling through back to 2015. I should also mention if you subscribe on a podcast app like Apple podcasts, which is a really easy, easy way to listen to the show, if you listen through social media, that's fantastic. Listen, whatever, you know, whatever is easiest for you. But if you use a podcast app, and you subscribe, that 300 episode limit doesn't apply. you subscribe for free, I wish it was called something else. But when you subscribe to a podcast, it has nothing to do with buying a subscription or signing up for a subscription. You're literally saying to the app, give me all the episodes for free. So there you go. Gotta say a quick thank you for getting me to Episode 300. I'm so thrilled when we started I wasn't sure how long it would last. I certainly wasn't looking five years into the future. So thank you So much for listening for sharing these episodes and for frankly, becoming part of a community. We have an unbelievable Facebook group and I've connected so much with people over zoom and the chat over this time. I really appreciate it. So thank you for letting me continue to serve you. Diabetes Connections is brought to you by one drop. And I spoke to the people at one drop and you know, I was really impressed at how much they get diabetes. It makes sense because their CEO Jeff was diagnosed with type one as an adult. One drop is for people with diabetes by people with diabetes. The people at one drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. Imagine that one drop diabetes care delivered, learn more, go to diabetes connections calm and click on the one Drop logo.

 

My guest this week was one of the first people in his community officially diagnosed with COVID-19. And Patrick servo was diagnosed with Type One Diabetes more than seven years ago. So like you I had a lot of questions about what it is like to live through Coronavirus, while also living with type one. Now, of course, keep in mind as we're speaking here, every case is different. Every case of Coronavirus of COVID-19 to be specific, presents a little differently, some very mild, some much more severe, a lot of asymptomatic cases we hear about and type one diabetes kind of goes without saying on this show. Everybody handles that differently as well. So please remember that this is about Patrick. We can extrapolate some information from here. Frankly, I find it very reassuring. But at the same time, please talk to your healthcare provider. Don't jump to conclusions and I will link up much more information at diabetes dash connections. Calm the episode homepage in the podcast show notes. So here's my interview with Patrick servo. Patrick, thank you so much for joining me. How are you doing? How are you feeling

 

Patric Ciervo  6:09

these days? I'm feeling well, thankfully, my symptoms have been gone for a while. And yeah, I've been feeling good.

 

Stacey Simms  6:19

Wow. All right. So from where I sit, not knowing anything really sad. It just seems so scary. So I appreciate you sharing your experience. Let's back up. How did this all start? You've been living with type one we should say for for seven, seven and a half years now. So you're not exactly new to type one. But what happened in terms of feeling ill a couple of weeks ago.

 

Patric Ciervo  6:40

So basically, early in March, I had a busy weekend and everything. There was a work event on Friday, about where we went out because there was someone's last day, but I was running around Friday and Saturday, Sunday night. I was at my girlfriend's apartment and we were just beat from the weekend she works with me. So we were just beat from the whole thing. And she noticed that my body temperature had started feeling hot. But because we were both rundown, we didn't really think too much of it. So, the next day I woke up, I felt good. I didn't really feel bad at all, like maybe a minor thing, but nothing to worry about. So I went to work Monday, but that night, my body temperature was hot again, and her roommates a nurse, so we had a thermometer, and my temperature was 103. So we went to the primary doctors on Tuesday, I was tested for the flu, which came back negative Faker really diagnosed me with anything. I didn't mention Coronavirus, but he didn't think it was that he tested me for the flu again with a more accurate test but the test will come back the next day. So in the meantime, he gave me an A biotic and Tamiflu and told me to take Motrin Tuesday night, my temperature started going down like a 1012. By the time was 5am. It was about a 93. I woke up in a, like puddle of sweat, we call 911 fairing vows going into some type of shock. And I was in the car since then.

 

Unknown Speaker  8:19

So when you guys called for an ambulance, were you thinking this is diabetes related? or What did you

 

Patric Ciervo  8:25

think? Well, she had looked up and everything that diabetics have more like more of a chance to go into a shock from fever or something like that. So she was kind of the one pushing the 911 call. So we did that. I didn't think too much of it until a little bit later on. When I was like in the ambulance, I still wasn't feeling well. By the time I got the ER, I was feeling good, and my temperature was normal.

 

Stacey Simms  8:53

It's so hard to be the person in that circumstance, right? You're not thinking exactly clearly the person that called you know, is trying to figure out What's going on? When do you remember? Do you remember when they said okay, this is gonna be COVID-19

 

Patric Ciervo  9:06

they didn't they test me again for the flu in the ER, they tested again twice, and that both of them came back negative. We got the call from our primary the second flu test that he did came back negative, but I was already like things were back to normal, my temperature was fine. So they tested me for COVID as a precautionary, and because they tested me, they put me in the ICU and my own room and they want me to be there until the test results came back, which they were told would be the next day. I didn't get it back till that Saturday. I was in there on a Wednesday. Wow. But the doctors that would come in saw me like I was immediately getting better and everything. My only symptoms before the diagnosis were the fever and a cough. I didn't have trouble breathing, but they thought I looked good enough that they didn't think It was COVID

 

Stacey Simms  10:01

That's amazing. So you start feeling better and that's when you find out that's what you had.

 

Patric Ciervo  10:05

Yeah, I know. So I'm thankful I can't like I was already on the mend when I found out and it was a little bit before like all the craziness started in the world and so I didn't go in in too much of a panic state. When I found out I was diagnosed with it. There was still like a shock like, oh God, like diabetic and I've been hearing these things aren't good, but I was getting better each day. So after like a deep breath and everything able to get back to a good mental state.

 

Stacey Simms  10:35

I know everybody wants to know about diabetes and you know what you now looking back what you think of that part of it, but I want to ask before we move on, How bad was that test for COVID-19 you hear like it's really far up the nose is that How bad was

 

Patric Ciervo  10:49

it? Yeah, it was. It was exactly that out the nose and everything as they did in both nostrils, two different ones at once. It was not fun at all. You know, it was something I could live with and everything.

 

Stacey Simms  11:04

I'm sorry to ask. I just you know, I think about what how they test you for strep. Yeah, right. It's always like you gotta gotta gotta get it far enough to gag a little bit. Uh huh. Your

 

Patric Ciervo  11:12

nose. Oh my god. Yeah, it was pretty much yeah, exactly like that only your nose and I was like, flinching and everything. But it was totally doable.

 

Stacey Simms  11:23

And I know it's worth it. Please don't send me nasty emails like, yeah, it's just one of those things that I don't want to ask about. But looking back, what about your diabetes during that time? I think people do get very concerned about you know, treatment and blood sugar's you didn't know you had it. So it was kind of difficult or different to think about managing that way. But looking back, anything stand out?

 

Patric Ciervo  11:45

Well, in the hospital, my blood sugar was higher than normal. For the most part. I'm not sure how much of that was the illness related. I was very stressed in the hospital and could not move at all. So I think that also had part to do with it. Because I didn't have a problem coming down from the highs, there was nothing with my diabetes to think like something's off. I need to get checked out the days leading up to it. I've been fairly decent you know for the most part

 

Unknown Speaker  12:14

so you didn't notice any like really wacky high blood sugars before the diagnosis. No, no treatment, right like that.

 

Patric Ciervo  12:21

No, no. Yeah, thankfully.

 

Stacey Simms  12:23

So when you got the test back at the hospital You said you were already kind of on the mend. How much longer did you stay there?

 

Patric Ciervo  12:28

They released me Friday, and I got the test back Saturday. So I was self isolating just to wait for the test result. And then that's when I got the call.

 

Stacey Simms  12:40

What do they tell you after you test positive what happens next even at home?

 

Patric Ciervo  12:44

Yeah, they had given me in the hospital what to do if it does come back positive. They gave me a worksheet like to do less than everything. Just basically everything we've been hearing, you know, self isolate for two weeks. I think it was something like 72 hours, but two ways you can be like out of the quarantine is for 72 hours, you can't have a fever and other symptoms have to be gone. And the other one was or you have to get tested again, it has to come back negative. And I didn't get tested again. When I was at home quarantine. I only had a fever one other time.

 

Stacey Simms  13:21

So you feel pretty confident your past.

 

Patric Ciervo  13:23

Yeah, I did develop a headache and the quarantine.

 

Stacey Simms  13:27

So again, back to diabetes. Did you ever sound like the mom now? But did you call your endocrinologist and loop them in? Right back to Patrick as he answers that question. But first diabetes Connections is brought to you by real good foods. high protein, low carb, grain free, gluten free and terrific. If you're trying to eat keto, their line of foods just keeps getting bigger. We've been talking about them for so long. Now. I think when I started they only had pizza. Right, but now they have stuffed chicken breakfast sandwiches, you can get the pizza, just the crust, so you can kind of make it whoever you want. They have entrees. They are of course available in the grocery store freezers, but they're also so easy to get to your door, their whole line can be delivered. And they have a lot of specials right now. There's free shipping specials, but also on their website. If you sign up, you can get all the coupons and promos delivered directly to your phone, make it very, very easy. Find out more go to diabetes, connections comm and click on the real good foods logo. Now back to Patrick and I was asking him if he caught his endo when he was admitted.

 

Patric Ciervo  14:44

You know what, I had an incident in the hospital where when I got there, they asked me if I had an insulin pump. And I told them I did and they asked me if I wanted to like you know, administrate my own insulin. I said yeah, and there was a bit of a next up with The nurse who was under the impression she was giving me insulin shots, but they weren't not taking the fact that I already had insulin on board. And that, like they would not be calculating that. And so the insulin they gave me and they seem to not want to give me any type of basal insulin, they just wanted to do like check every two or three hours. If I was Hi, give me a correction. I didn't call my personal endo, because they're kind of hard to get ahold of. But I have a, I go to this camp for athletes with Type One Diabetes called diabetes training camp and the endo that has that, that ended that runs it. I texted him about that initially. And every day since then, he had texted me or called checking in how I'm doing. I told him my blood sugar's were high. He told me don't try to get to like 100 to 120. Don't aim for perfect, just as long as you're able to get to 140 to 180. You should be fine. I have any problems.

 

Stacey Simms  16:01

And yeah, I mean, that's one of the worries that I always have in the hospital. I mean, I'm there with my son being crazy mom. So you know, they're not going to give him extra insulin, but it's so frightening for you if you're there by yourself, which you had to be clear that up. I mean, I'm envisioning this nurse trying to give you a shot and you holding up your pump, you know, you're trying to ward her off. Did you argue with them?

 

Patric Ciervo  16:24

Uh, yeah, I mean, I'm not like, I like I don't like conflict at all and everything. But this was like, there was no way I wasn't standing my ground this and everything because I had like, four or five units on board, because I was trying to come down from like a 260 or something. And I'm explaining it to them, and explained that the doctor said that eventually they understood what I was saying after a few minutes. They said, All right, they'll talk to the doctor. And about 15 minutes later, they called me saying that the doctor says fine.

 

Stacey Simms  16:56

No, thank goodness. Do you use a CGM as well? Yeah. And did they let you kind of use that in the hospital? Did they insist on doing finger sticks?

 

Patric Ciervo  17:04

They did do finger sticks for their own record, they said, but that's all my phone. I was just going off that the whole time.

 

Stacey Simms  17:11

All right, so have you followed up with your endo? I mean, it sounds like you're on the mend. Doesn't sound like you needed to check in with him. I'm not trying to mom you

 

Patric Ciervo  17:17

right? Yeah, chicken. I mean, he was texting. We were texting and calling back and forth when I was doing the two week quarantine as well as my primary. My primary had called and everything I told him I had a low grade fever the one night he said, You know, sometimes that happens, I won't be too worried about it unless it's kind of a stays. And it the was one night and I woke up the next morning fine.

 

Stacey Simms  17:44

Alright, so I'm gonna ask you some personal stuff you do not have to answer. All right. Here we go. One of the things that I that we see so often when people in the diabetes community are talking about the fears of Coronavirus is you know, you have to have quote good Control to come out of this in good health, you know, and that we've seen that people, especially with type two diabetes, and all those comorbidities don't do well, but COVID-19 and I hit I always hate asking people I actually I don't I don't ever ask anybody in the show with their agency. And I'm not going to ask you, but are you a perfect diabetic?

 

Patric Ciervo  18:18

I'd say a B plus student. I'm definitely not perfect, but I overall I pretty well control.

 

Stacey Simms  18:27

I just think it's important to ask because, you know, I think there's a lot of fear that if you're a one c isn't 5.9 or 6.1, you know, consistently that that illnesses are just going to knock you down. And it's just not the case. Obviously, you want to be in good health, in quote, good control. So you know, share as much as you'd like. I think that's important to hear. I have seen a video or two of your Oh, yeah. You should say your comedian. Yeah. And you know, I've seen some of your blood sugars. They're not all the time.

 

Unknown Speaker  18:56

Right, right. Yeah. Which videos are you talking about?

 

Stacey Simms  19:00

Seek specifically there. I was thinking of the drinking game. Okay. Yeah.

 

Patric Ciervo  19:05

So yeah, just along with this episode. Oh, cool. Yeah, I that was a few years ago. So I kind of forget what was going on that I did that about three years after I was diagnosed three or four years. And my whole thing was FM pi, it's fine. But as long as I like, come down, I'm not gonna stress about it. Because in the beginning, my educator introduced me to one of her, like interns one day or, and she goes, like after I've been a diabetic for a year. And she says, This is Patrick. He used to call us every time he was about 200. And well, because I was told I wasn't supposed to be 200. So like the first like, year and a half, I was kind of like, going like crazy, making sure I could blood sugars. But once I realized I could be a little higher, and I'll be fine. Just as long as I came down. I was happy.

 

Stacey Simms  19:56

Yeah, definitely. I think we all handle this in a different way. You I have long decided that perfection is not an option.

 

Unknown Speaker  20:03

Yeah,

 

Stacey Simms  20:04

exactly. So I think it's just important to, to just kind of spotlight that a little bit and I appreciate you sharing that. I'm not gonna make you the spokesperson, I promise for people with diabetes who have been through something like this, but having gone through it, you know, what is your advice for other people with type one? You know, is there anything that you would tell people to to concern themselves with more or less?

 

Patric Ciervo  20:27

I mean, I kind of feel like basically, I didn't have that too hard at that experience, which is, in some ways I kind of feel bad because you know, I would like to say that like I fought all genders everything, like in spite but and I know everyone's experiences not gonna be like that. So I feel very fortunate, but like, I think a lot of the things like me recover quickly, was that the second I got to the hospital, I got there like when symptoms were early, and I've shot up with like fluids early. I think that's the number During my quarantine, I was drinking water, like non stop and take and taking vitamins. I was just doing everything I could to make sure even though I was feeling better that I wasn't going to let this slit, if you had to be in the hospital, I'd say definitely advocate like the hell of your diabetes management and how you go about it. I think for nurses who like work great, otherwise, they kind of have misinformation about what to do. Yeah,

 

Stacey Simms  21:29

I'm curious too. Did you bring a bunch of supplies with you? I've seen some people recommend, you know, take up to two weeks, you know, if supplies if diabetes supplies to the hospital if you have to go?

 

Patric Ciervo  21:40

Yeah, I mean, I'm on the on the pod so I grabbed all that I grabbed strips, and my my Omni pod and I grabbed pumps. I had my girlfriend put like juices and gummies in her purse, and then my parents did come up and everything from South Korea. They would go to my apartment and they bought more stuff when I need it.

 

Stacey Simms  22:04

It's so interesting because you were in the hospital before much of the lockdown or I shouldn't call you know, the the states that decided to self quarantine whatever we're calling it stay at home shelter in place. This would be for most of that went into place, wasn't it?

 

Patric Ciervo  22:20

Yeah, I mean, my first day in the hospital was the day Tom Hanks was diagnosed. So that's then. So that's basically my buck marker for how early it was you in Telmex? Yeah, same day.

 

Unknown Speaker  22:34

Uh huh.

 

Stacey Simms  22:35

You were diagnosed as a young adult. were you diagnosed correctly right away because I keep hearing more misdiagnoses at that age.

 

Patric Ciervo  22:41

I was diagnosed correctly. I really like my primary from South Jersey. I was in Ireland for a week, the week before. And I was drinking water non stop. I was in Ireland with my family. And my mom noticed two days later, we had a surprise birthday for At the surprise party all our friends are saying I look super skinny. So about two or three days later actually one day after her birthday, her actual birthday, she made me go to the doctor she talked to me and I told him my symptoms and he looked at me and he told us nurse to get the stuff to test me with instead tell my patients I'm going to be a while And so yeah, so my blood sugar was like 500 something and he made arrangements for me to go to the hospital and all that and gave me his personal cell phone if I need him at all during the night or something like that. And thankfully I didn't but yeah,

 

Stacey Simms  23:38

and you mentioned the the camp and then in the athletes that you've been involved with and you know, you believe I've done a lot of bike rides. Haha, did you find all of that because that makes such a big difference once you find that community?

 

Patric Ciervo  23:49

Yeah, that's definitely been like my lifesaver and everything prior to the diagnosis, went against into cycling, and I wasn't spiking like that much but Now my friends went to bike. So I was looking for a group to bike with. So in the hospital, I googled cycling and diabetes. And I found that jdrf ride to cure. And I contacted one of the coaches, who is also a type one. And the endo that runs this camp is his personal endo. So he gave me his information. And I think going there since

 

Stacey Simms  24:23

Oh, that's great. Yeah, going forward. Now, have you been instructed to do anything different? Are you just kind of back to full health? Do they monitor you? Do you diabetes wise or otherwise have to think about anything else?

 

Patric Ciervo  24:34

No, I did get a call from the health department and and Hoboken where I'm living now and in South Jersey, where I'm from, but other than just kind of initially checking in on me. I haven't heard anything. We get a call from my primary doctors nurse. I got a call from her a few times, just checking in, but since I recovered, no one seems to be concerned about me. I guess I Have a lot on their plate. But I've been self isolating. I've been doing everything. Basically everything everyone else has been doing washing hands. What? If I go out to walk the dog? I'll wear a mask and everything. You know, I don't know what's what. So just kind of be precautious in any area I can.

 

Stacey Simms  25:18

And I meant to ask when you were isolated for those 14 days. Did you live with your girlfriend? Did you live with anybody else or was that difficult for you guys?

 

Patric Ciervo  25:26

When my test result came back Saturday, she had already thought she had it. But she got tested then after my test result, and she came back positive. So we don't live together. But I have a roommate up in North Jersey, and my sister has a house to herself. She said she would go to Mar parents beach house for those two weeks and that I could use her house. So I was there for like a few days by myself. But once my girlfriend was diagnosed and everything, she has two roommates as well and she didn't want to be around them. They would still be isolated. together

 

Stacey Simms  26:00

in the hospital or otherwise they didn't treat you with anything did they? It doesn't sound like you were you know ascribed anything special?

 

Patric Ciervo  26:06

No they basically they did give me an A biotic when I left. And I think I don't even remember they were giving me lots of fluids and everything. Maybe they did give me some type of tail or something. I don't even remember what that was.

 

Stacey Simms  26:18

Yeah, yeah. But nothing on an ongoing basis.

 

Unknown Speaker  26:21

No, no. Well, Patrick,

 

Stacey Simms  26:23

I'm so glad you're okay. And thank you so much for sharing your story with us. Yes. Posted if you get the call to I don't know, donate plasma, or whatever the heck they're doing. Haha. You know, let us know what where you go from here, but I really appreciate you sharing your story.

 

Patric Ciervo  26:37

Yeah, thank you for having me in everything.

 

Unknown Speaker  26:45

You're listening to diabetes connections with Stacey Simms.

 

Stacey Simms  26:51

More information at diabetes connections.com. I will link up more information about generally speaking, you know COVID-19 type one diabetes and other interviews with people with type one who have been admitted, diagnosed officially with COVID-19 and have recovered and are speaking about it. So I will I'll post all that information. I will also put the guest Patrick's blood glucose drinking game video that we mentioned, that's in the Facebook group. And I will post it in the show notes as well just go to diabetes, connections comm and click on the episode homepage. Patrick and I talked off the air briefly about the new policy or the provisional approval from the FDA to have CGM used in hospitals. And that would be hospitals would actually give the people admitted a continuous glucose monitoring system. dexcom is involved. Abbott is giving the Libra array. So it's very, very new. In fact, it was after Patrick was released from the hospital. I believe that the FDA approved that provisionally but what I'm trying to figure out still and maybe by the time this airs, we'll have the answer to this. I'm trying to figure out if that is Only for people who come in without their own system, right? mostly people with type two diabetes, as we had talked about in the conversation with dexcom CEO Kevin Sayer, or if you come in with type one diabetes, and they're more willing to use your own system, or if they give you one if you don't have one, so there's still a lot to figure out there. But as you heard, he still had to do a lot of educating. And that, to me is so difficult when you're the person who has type one and who is in need of medical care. I mean, not everybody is going to be as able, as Patrick was to describe the situation and say, you know, I've got this. So man, um, you know, we've got to keep advocating, we've got to keep educating, time for Tell me something good, which is usually a good segment for that. But first diabetes Connections is brought to you by dexcom. We started with dexcom back in the olden days before share, and I always meet people who have no idea that there was a thing before share, right that there was a time when you couldn't look at your kids blood sugar on your phone. So trust me when I say using share and follow up really made a big difference. Benny and I have always set parameters about when I'm going to text him, you know how long I'm going to wait, that kind of stuff. And it really does help us talk and worry about diabetes less. If he's asleep over if he's away on a trip. It gives me so much peace of mind. It really helps me if I need to troubleshoot with him, because you can see what's been happening over the last 24 hours and not make a decision based in just one moment in time. The alerts and alarms that we set also help us from keeping the highs from getting too high, and help us jump on lows before there were a big issue. Internet connectivity is required to access separate dexcom follow up to learn more, go to diabetes, connections comm and click on the dexcom logo.

 

Tell me something good. Recently, we have shifted to talking about healthcare heroes and stories of people with type one diabetes who are in healthcare fields. And I'm going to talk about one in just a moment. But first, I want to share a great story about a gentleman who doesn't Have Type One Diabetes doesn't have diabetes at all. But he is very much a part of a diabetes community. You may know Mike mangus, because I've talked about him here on the show. And I've certainly talked about his products. Stay put medical is not a sponsor, but I love them. After all these years of trying different products. I think about two, maybe three years ago, we finally started using stay put, and this is gonna sound like a commercial, but it's unbelievable for Benny, everybody's skin is so different. So it can take a while to figure out what's right for you. Here's the example I give last summer stay put kept his decks calm on the entire week of diabetes camp. And then for three and a half days at the beach. Yeah, we restarted the sensor. So they were in the water every day at diabetes camp. They were sweaty, they were gross. And then we went to the beach and did ocean swimming and all the gross stuff in the sand. So that thing is unbelievable. But I'm supposed to be doing a commercial for state but sorry, just kind of setting it up. But Mike who heads up state but he was diagnosed with COVID-19 In early March, and he spent four days in the hospital, he is also fully recovered. And he's able to donate plasma in the hopes of helping others. Plasma donation for COVID-19. I mentioned at the very end of the interview with Patrick, it's newly regulated, it's experimental. So it isn't widely available or used yet. But Mike was right in the front saying I want to do this. He was knocking on doors as soon as he recovered. I will link up more of his story. He's got some coverage in the media, especially in Florida, where he lives. So I just think that's a great news story. And we'll follow Mike and kind of see how that goes and see what happens with plasma donations that could be really interesting, and hopefully helpful. I also want to tell you about Amy She is an RN. She's a mom to Marcus Marcus is 16. He was diagnosed in June of 2016. And he was 12 at that time, so Amy is a nurse at a rural health clinic in Oregon. And she says finding the balance between the demands of work she does have reduced it hours now, but even so, managing medical costs and keeping her and her loved one safe these days is a big challenge. She says I'm a quilter. So I've been making fabric masks for my co workers, high risk patients and acquaintances to keep myself busy. These are crazy difficult times. But I firmly believe this world would be a better place having made it through until then she says I'm taking T one D mom life by the horns, and one day at a time. Amy, thank you so much for sending that in all the best to you tell Marcus we said hi. And if you have a Tell me something good story, please go ahead and share it. You can shoot me an email Stacey at diabetes, connections calm. You can post it in the Facebook group. However you want to get it to me, you can message me on social media. I would love to tell your good news stories. And of course we post them on social media every week as well. Hey, can you hear that? Benny is playing video games. And the kids you can call them video games anymore, but you know what I mean, he's on his Xbox or whatever. He's screaming soul. Right now that if I didn't know better, I would think he was being, you know, physically attacked. And I've talked to my friends, this is very typical of teenage boys. Oh my god, they're so loud. So I'm gonna go yell at him when I'm done taping, I think it's gonna be all good. And maybe I'll go secretly record him some time. Just you can hear it. Oh my god. But hey, that's one of his big social outlets right now. You know, he gets in the headphones and plays with his friends and they're all together. So I'm not gonna complain too much. I'm gonna go in there and tell them to knock it off. The big threaten my house these days is you better behavior. I'm changing the Wi Fi code, you know, fate worse than death right now. And we're all on the systems all day long. I don't want to look at my time on my screen time, right or the time on your phone. They all have those features. Now you can tell how much you've been on the phone. Oh, my goodness.

 

Well, this is the part of the show where I generally talk about where I'm going. And I have been going a lot of places online recently. Yeah, I mean, it's all virtual. But I only bring that up because I want to tell tell you about a discount that I'm doing for the world's first diabetes mom right now. Yes, of course, if you're new, this is my book. It's available on Amazon. There's an audio book, you can get the Kindle version, of course ebook. So I'll put the link. It's always in the show notes. But I bring it up because I was talking to groups this week online, and I did a special discount code for them. And I want to pass it along to you. As I am taping this, I am scheduled to talk to jdrf in Michigan, and I'll be doing a world worth D parent meetup, which will probably already have happened by the time this episode comes out. But I've got a promo code not for Amazon, you have to go to diabetes connections.com and order the book through my website to get the discount. And it's very simple. The discount code is worst, just the word worst w o r s t. And that promo code will be good. Until next week, April 28. Again, that promo code is worst. I believe it saves you five bucks off the cover price. Unfortunately, you still have to pay for shipping. I know a lot of people go to Amazon because of that, but this will actually still be less than it costs on Amazon. promo code again is worst. And I can't wait to get back on the road, not just to sell books, although that's a lot of fun too, but you know, to meet people and do these presentations in person. There's so much fun to still do, but it's a little weird to talk to my computer and not talk to a crowd of people. I like the people a lot better. Well, thank you as always to my editor john McKenna's from editing solutions. Thank you for listening. I so appreciate you being here every week. What a time we're living through. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Unknown Speaker  35:48

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

 

Transcribed by https://otter.ai

 

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

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

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

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

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

-----

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!

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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

 

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.

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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

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.

Join the Diabetes Connections Facebook Group!

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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

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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