#1191 Canadian Dinner Rolls

Bonnie is 57 and was diagnosed with type 1 diabetes at 18 years old.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome to episode 1191 of the Juicebox Podcast

Bonnie is a 57 year old architect who has had type one diabetes since she was 18 years old. She's got a couple of things going on. I don't want to ruin all the fun for you but there's frozen shoulder a skin condition and much more. While you're listening today, please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always please, please Always consult a physician before making any changes to your health care plan. When you place your first order for ag one with my link, you'll get five free travel packs and a free year's supply of vitamin D. Drink ag one.com/juicebox help out with type one diabetes research by going to T one D exchange.org/jukebox. and completing the survey. It's all you have to do you need to be a US resident who has type one or is the caregiver of someone with type one takes you 10 minutes your answers to simple questions will help move type one diabetes research forward. And don't forget to check out the private Facebook group Juicebox Podcast type one diabetes with 50,000 members there is very likely someone in there you're gonna like someone's gonna have answers you need. Someone will be funny, thoughtful, kind nice. We got so much in there go check it out. This episode of The Juicebox Podcast is sponsored by the Dexcom G seven made for all types of diabetes Dexcom G seven can be used to manage type one, type two, and gestational diabetes, you're going to see the speed, direction and number of your blood sugar right on your receiver or smartphone device. dexcom.com/juice Box. Today's episode is sponsored by Medtronic diabetes, a company that's bringing people together to redefine what it means to live with diabetes. Later in this episode, I'll be speaking with Jaylen, he was diagnosed with type one diabetes at 14. He's 29. Now he's going to tell you a little bit about his story. And then later at the end of this episode, you can hear my entire conversation with Jalen to hear more stories with Medtronic champions. Go to Medtronic diabetes.com/juice box or search the hashtag Medtronic champion on your favorite social media platform. This episode of The Juicebox Podcast is sponsored by cozy earth.com Cozy Earth is where I get my clothing, linens and towels from their incredibly comfortable and temperate. I love them. I really do love them. And I love that I can give you an offer code that will save you 40% off of your entire order. Just use the offer code juice box at checkout and you will save 40% at cosy earth.com I

Bonnie 2:59
also think that you get a lot of visual cues when you talk to people such that if suddenly you want to speak and your mouth is hanging open. I can't tell if I don't see you.

Scott Benner 3:08
I have made nearly 1300 episodes of this podcast you telling me I've been doing it wrong. Oh no, not at all. Do I get to see you or you just get to see me.

Bonnie 3:19
Oh no, you get to see me too. Absolutely. Hey, hey, also,

Scott Benner 3:24
you're gonna get to hear me. I'm gonna test my blood sugar. So while we're getting set up here, I'm recording you chat normally wouldn't do this early in the call, but I'm wearing a CGM. Very cool.

Bonnie 3:39
While you're doing that, I'll I'll do that I'm I'm at 150. So

Scott Benner 3:43
I just got out of the shower. And it's telling me I'm low. And I don't imagine that's true, although I have not eaten in a long time. So I'm going to test myself here with the contour next gen blood glucose meter contour next.com/juice box. Let's say I have struck my finger. blood is rushing to the area not really rushing. I'm getting it. Actually this meter doesn't need a lot of blood. So not a big deal. You know, maybe it would help if I put my glasses on. Old. Oh, yeah, damn thing. Okay, there's my little blood drop. And let's see what we got here for my blood sugar. What do we got? Survey says 54321 95. I knew my blood sugar wasn't well. When

Bonnie 4:32
you started counting down and you said five. I thought that was your blood sugar. I thought well, that's perfect.

Scott Benner 4:38
What do you from Canada? i Oh, no. Okay.

Bonnie 4:40
I'm bilingual when it comes to blood sugars. Oh, excellent.

Scott Benner 4:45
Yeah, so I'm looking here. So I went in the shower and it took a dip. I don't know why. I'm gonna calibrate because I don't want to hear it beep at me while you're doing this. When I say 95 You did?

Bonnie 5:00
Did silence my phone.

Scott Benner 5:01
Do that to a minute ago? It says I'm 70 now. It's like a little. I don't know. Interesting. It's been really interesting to watch because last night, I on purpose ate pizza and Chinese food. And my blood sugar like didn't move. And in the past that would have, but I'm using we go V now. So basically it's, I mean, basically it says Empik. It's the same molecule. Of course, of course. And I just don't seem like my blood sugar just won't spike anymore. Like I don't I want to be clear, I don't have diabetes. I'm not pre diabetic, or anything like that. But if I would have eaten a couple of slices of pizza and some Chinese food, some rice, I would have seen a 150 Maybe 140. So like, nothing went up to like 95. It stayed there for a couple of hours went right back down in the mid 80s. was pretty good.

Bonnie 5:51
You exercise exercise yesterday.

Scott Benner 5:53
I try not to exercise at all, so I didn't do it yesterday, either. Okay, so we're doing this, what I guess they would call bass ackwards. Because I would normally tell you all the stuff before we started recording that I'm going to tell you now, so everybody's gonna get to hear what I say to people. Before we're recording. I don't care what you say, I am not going to stop you from saying anything. If you go in a really crazy, weird direction, I'm gonna go with you. If you use people's names, please be comfortable that you can, the worst thing that could happen is that you get to the end and say, like I said, my uncle's name five times I need you to go take it out. It creates an editing nightmare. And other than that, I wouldn't be overly specific about where you live. And that's pretty much it. So usually now I say do you have any questions or concerns? Oh, no, no, not at all. Okay,

Bonnie 6:49
I'm nervous. You're nervous energy? nervous energy. Can

Scott Benner 6:53
you push your hair back away from that microphone for me? Thank you. Don't worry about being nervous. I'll make you comfortable. And if I don't, I felt so it's on me, not you. What I'll say is last thing. Don't need to use your last name in a second. Just kind of take a deep breath. Introduce yourself. Give me a couple of sentences about who you are. We'll start talking hour from now it'll be over. Well, this episode of The Juicebox Podcast is sponsored by cozy Earth. And right now I'm looking at cozy earth.com to see what's going on. I got Oh, look at this bamboo pajama set for ladies. That jogger pants for ladies looks like plush lounge socks. That's one of Oprah's Favorite Things. There's the bath collection. We love the waffle towels. But there's also premium plush bath towels. Everything that you see here can be had for 40% off with the offer code juice box at checkout. Even the sheets. Now we use the bamboo sheets, you may choose different linens, I don't know what you're going to love when you get to cozier.com. But we sleep on bamboo sheets from cozy Earth, they are incredibly comfortable. And I bought them myself with my own money using my own offer code. juice box at checkout. 40% off is what I saved. You can as well at cozy earth.com.

Bonnie 8:16
My name is Bonnie and I live in the Midwest originally from Canada. And if I tell you my profession, probably everyone will know who I am. Because it's a small world of my profession. But I'm not hiding. I'm an architect. So saying

Scott Benner 8:33
that your Barney, an architect from the Midwest is going to tell people who you are. At least Oh, you're in the midwest of Canada?

Bonnie 8:42
No, I'm I live in the United States now.

Scott Benner 8:46
Oh, you live in the United States now. Okay, because I was like in Canada, there must only be one architect. That's not what we're talking about. Right? No. Okay. Well, I'll tell you what, if you get a call from somebody who's like, I heard you on a podcast, please email me immediately because I will be. I'll be baffled that that happened. Because you're I think I would be baffled as well. I think if I went on another podcast and said, my name is Scott, I make a podcast called The Juicebox Podcast. I still don't think anybody would know who the hell I was. So I'd be I wouldn't be thrilled if somebody knows you from that.

Bonnie 9:19
Okay. I mean, if I got very specific and said, I'm from, you know, this portion of this

Scott Benner 9:24
state, okay. All right. You didn't build like a really famous building or something. Did you design something really famous? Reasonably

Bonnie 9:31
famous? Yes. In the state of Michigan? Yes. Interesting. I won a competition to design a memorial for law enforcement officers who died in the line of duty. Wow,

Scott Benner 9:44
that's amazing. And I thought you're gonna say lawn furniture.

Bonnie 9:50
I was like, I don't, I don't design lawn furniture. But I know architects architects do design furniture.

Scott Benner 9:56
I thought you were gonna say designed to building About lawn furniture. And I was like, This doesn't make any sense at all. I don't think she's as famous as she thinks she is.

Bonnie 10:05
I'm not that I'm not that famous.

Scott Benner 10:09
How did you? Is that something you always wanted to do? Is it something you thought of as a child? Or do you pick it up in college, I

Bonnie 10:14
always wanted to be an architect. My father was an engineer, and I just got that way of thinking in my head, I inherited that way of thinking. I

Scott Benner 10:24
always wanted to be an architect. Do you have that engineers mind? I think so. Yeah.

Bonnie 10:30
Very linear way of thinking, a very mathematical way of thinking. One plus one always equals two type of thing, which, you know, leads me to the My frustration of diabetes having diabetes. But,

Scott Benner 10:43
yes, do you have that sort of social awkwardness that sometimes engineers have? I'm

Bonnie 10:49
not an overly social person. I'm a very visual person. I'm the type of person who likes to sort of watch, sit back and watch.

Scott Benner 10:59
Interesting, you know, you said that you were a little nervous. I don't normally do the podcast with video on. And we have it on today, right? And I've lost so much weight over the last nine months. My brain doesn't always remember if that makes sense. So I'm sitting here, I spent the first couple of moments we were talking, trying not to obsess on whether or not my stomach look big in the video. I don't

Bonnie 11:26
know why I'm not watching your stomach.

Scott Benner 11:28
But you're looking at me now. Do I look heavy in the front? Not at all. No, you know, I think I do. Oh, I'm wired from having been overweight a lot of my life. So just see this line on my shirt? Oh, yeah. Yeah. It's apropos of nothing. It's just the way my shirts hanging. But I think it's showing you a delineation of where my stomach starts and stops.

Bonnie 11:52
Well, we all we all have a stomach. So

Scott Benner 11:56
if I stay on, we go be much longer. I'm going to be a skeleton, and then I won't have a look at.

Bonnie 12:00
That's not good, either. I mean,

Scott Benner 12:02
I'm not gonna go that far. But no, I just I wanted to let you I actually the people in listening to in on that, like, there's just a wrinkle in my shirt that my brain is telling me. Hey, that makes you look fat. Adjust yourself. Not crazy.

Bonnie 12:18
I think we are all very self conscious people. Yeah. Yeah.

Scott Benner 12:22
It's really something anyway, I just, you know, it's a podcast, if I don't share these things, then that it's not a podcast anymore. It's just, yeah,

Bonnie 12:30
I mean, we don't get the visual when we listen to you. So we have to kind of make up what we think you're doing where you're sitting. At least I do.

Scott Benner 12:38
Yeah. That whiteboard behind me has the secrets of the podcast for the next five years on it. So all the things I'm going to do like literally 123 new series, a bunch of different topics we haven't gotten to yet. There's a note over there for me to pay my taxes. Do I want to get the book rights back to my book? Which by the way I do, but I don't want to do it badly enough to put any effort into it. In case you're wondering. It's all the list of advertisers. Actually, there's new advertisers out there that people don't know about yet. And then there's this tree art in Germany, it says big ideas. And then each leaf has a different little like idea about things I should maybe think about during the podcast.

Bonnie 13:20
That's an interesting mnemonic. Yes. Yeah. So

Scott Benner 13:23
art enjoyed from the last time she was she also wrote the date on it. And she says, every day, change the date, it's good for you. And I was like, Yeah, I'm probably not going to do that. It said, it said July for a really long time. And then I changed it. I thought recently, and I just looked at it since November 3, it's the 17th. So apparently, I'm not on top of that. Anyway, what made you want to come on the podcast? I

Bonnie 13:47
think a lot of different reasons. But you know, I used to think of myself as just sort of an ordinary person dealing with diabetes, and I just wanted to come on the podcast and say that, you know, we're all kind of dealing with it every day. 24/7 nonstop. And yeah, just sort of get that out there and get it out there that frustrations with it. That sort of thing I've been dealing with it for Oh my goodness. 39 years, really? So yeah. How

Scott Benner 14:21
old are you? Can I ask? 57 Oh, wow, you look terrific. Oh, thank

Bonnie 14:26
you. It's a good good hair jeans.

Scott Benner 14:31
You know, Bonnie, you and I have a lot in common. I am steadfastly believe I look younger than I am because my hair is nice and dark. Exactly. It really is the whole thing until you're if you get pale and then the and then the lines right around your eyes. Yeah, the worst part. Yeah. Okay, so

Bonnie 14:48
the problem you're gonna have as you lose weight, you're gonna start to wrinkle you know, I mean as as we get older and you know, our faces stay nice and plump you don't see as many wrinkles

Scott Benner 15:01
I'm very near you in New York. I'll get Joan Rivers doctor to pull me back. There you go. They eventually killed her at night. Nevermind. I'm

Bonnie 15:08
just gonna use some drafting dots. Do you know what drafting dots? I do?

Scott Benner 15:11
Yeah. Just like in a sci fi movie, they'll actually be things on my face pulling my face backwards. It's not a bad. That's hilarious. Do you know they killed Joan Rivers. This episode is sponsored by Medtronic. diabetes, Medtronic diabetes.com/juice box. And now we're going to hear from Medtronic champion. Jalen.

Speaker 1 15:33
I was going straight into high school. So it was a summer heading into high school was that particularly difficult, unimaginable, you know, I missed my entire summer. So I went, I was going to a brand new school, I was around a bunch of new people that I had not been going to school with. So it was hard trying to balance that while also explaining to people what type one diabetes was, my hometown did not have an endocrinologist. So I was traveling over an hour to the nearest endocrinologist for children. So you know, I outside of that I didn't have any type of support in my hometown.

Scott Benner 16:07
Did you try to explain to people or did you find it easier just to stay private?

Speaker 1 16:12
I honestly I just held back I didn't really like talking about it. It was just it felt like it was just an repeating record where I was saying things and people weren't understanding it. And I also was still in the process of learning it. So I just kept it to myself didn't really talk about it. Did you

Scott Benner 16:27
eventually find people in real life that you could confide in,

Speaker 1 16:31
I never really got the experience until after getting to college. And then once I graduated college, it's all I see, you know, you can easily search Medtronic champions, you see people that pop up, and you're like, wow, look at all this content. And I think that's something that motivates me started embracing more, you know, how I'm able to take when diabetes. To

Scott Benner 16:52
hear Jay Lin's entire conversation stay till the very end, Medtronic diabetes.com/juice box to hear more stories from the Medtronic champion community. The Dexcom g7 is sponsoring this episode of The Juicebox Podcast and it features a lightning fast 30 minute warmup time, that's right from the time you put on the Dexcom g7. Till the time you're getting readings, 30 minutes, that's pretty great. It also has a 12 hour grace period. So you can swap your sensor when it's convenient for you all know that on top of it being small, accurate, incredibly wearable, and light. These things, in my opinion, make the Dexcom g7. a no brainer. The Dexcom g7 comes with way more than just this. Up to 10. People can follow you, you can use it with type one, type two, or gestational diabetes, it's covered by all sorts of insurances. And this might be the best part, it might be the best part alerts and alarms that are customizable, so that you can be alerted at the levels that makes sense to you. dexcom.com/juicebox links in the show notes links at juicebox podcast.com to Dexcom. And all the sponsors, when you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful.

Bonnie 18:13
What do you mean they killed?

Scott Benner 18:15
I don't think it was a like a vast conspiracy. But she was getting, you know, plastic surgery pretty, pretty constantly. And she was in a surgery center. And she I don't know what happened. She She threw a clot or had a like a heart attack or something. But the surgery center was not prepared to handle that level of a medical issue. Wow. There are people who think that if she was in a hospital, that they probably could have stopped it. Oh, that's interesting. That's interesting. So when I went and had my toe I surgery on my toe this year, and it was like, you know, a half an hour, they cut it open, they cleaned it out. I get drilled a bunch of holes in the bone and my toe or whatever, which by the way, seems like it's working. As they were like doing the pre op stuff. The nurse comes over. And I said, How are you set up for? You know, heart issues. And she goes, we don't handle heart things here. And I'm like, no, no, no, I'm sorry. I misunderstood. I'm like, what if I have a heart attack? You? Yeah, you got like a like clear. You got one of those things. Do you guys know what you're doing? Is there like a girl here who really gets it? And she goes, that's not gonna happen. I went, That's what Joan Rivers thought, Oh, God. She goes, what? And I said, Joan Rivers died in a surgery center like this. And she goes, No, she and I was like, Well, yes, she did. And I was like, so if I like, are you gonna be able to help? And she said, Oh, yeah, it's fine. By the way. I did not believe her.

Bonnie 19:36
Of course, she's gonna tell you it's fine. Like,

Scott Benner 19:38
don't worry, we'll just call 911. I was like, again. That's what they told Joan. Anyway, she really didn't believe me. I went in I got the surgery. I woke up like, you know, you wake up. You're like parked like used cars with a bunch of other people. I'm like coming to I barely have my focus. And this girl is like at the foot of my bed and she goes, Oh my god. You weren't kidding. Joan Rivers did die in a surgery. had heard I was like, Is that what you guys have been talking about while I was getting my toe fixed? And she goes, yeah, and then we just, I woke up and we started chatting about it. But anyway, I don't know. But yeah, anyway, but But yeah, my eyes, it's really around your eyes. If I could just have my eyes just came up a little bit, it would like change everything it really would. About how I look. Yeah. Anyway, I'm not gonna do anything about it. Can you imagine? How much would you be willing to spend? I mean, obviously, you're a very famous architect $5 million. But um,

Bonnie 20:32
I don't practice architecture to make money.

Scott Benner 20:37
I'm so sorry to hear that. But I always like think like, how much like, what percentage of your yearly income? Would you be willing to give away like, if you could, to making a major change to your physical appearance? You don't I mean, like, well, how much would seem like too much? Oh,

Bonnie 20:58
I could not tell you as a percentage. I think the bigger sacrifice for me would be sort of the time and effort and the recovery and just getting potentially major surgery, like I was a wreck when I had to have a colonoscopy when I turned 50. You know, I mean, I had a commission for days. No, it was kind of I was still on sliding scale MDI. And I'm kind of like, How the hell am I gonna do this?

Scott Benner 21:22
Well, you were doing sliding scale, like seven years ago. Oh, yeah. Okay, why don't we talk about your diabetes? How old were you when you were diagnosed?

Bonnie 21:30
I was 18 and a half. Okay. Still in Canada? Oh, yes.

Scott Benner 21:35
So they gave you NPH and regular? Absolutely.

Bonnie 21:37
drawing up a ticket twice a day, I used to have to draw up the regular the clearer than the cloudy because in case I accidentally injected the clear into the cloudy bottle, it wouldn't ruin the bottle. But if I accidentally injected the custom cloudy into the clear, it would ruin the clear bottle. That's

Scott Benner 21:56
what you were thinking about. What province were you in when this happened? Ontario. All right. They are a little different. I know that

Bonnie 22:06
I was 18 and a half. I was in my last year of high school because at that time, we used to go to high school for five years. So that was the equivalent of grade 13. We say grade 13. Not 13th grade. We don't use orden. We didn't use ordinals. In Canada,

Scott Benner 22:26
you're trying to use fancy words. Do you know I don't know what an ordinal is?

Bonnie 22:30
I wouldn't ordinals like first second third as opposed to 1230.

Scott Benner 22:36
Anyway, word for word. No, no, no, don't don't say anyway. I'm interested as service. Short for ordinal number ordinal number. Oh, look at that. defining things position in a series first, second, third. I look at you smarty. Okay, whatever.

Bonnie 22:56
I will tell you, I'm a real detail person. And I will go off on a tangent as well you so we could go off on some interesting tangents.

Scott Benner 23:06
I'm recording three times today. So one thing you can be sure of is I'm going to be a little more focused today. Although it's been 18 minutes, so maybe not but but your regular mph. You're still in school, even though you're you're almost 19 I'm sorry, keep going.

Bonnie 23:22
Yes, I am almost 19 it was timber such that I just finish started my final grade of high school. It was September when I got sick. I was hospitalized for 10 days. And basically, in terms of my diagnosis, I started to lose weight. So I'm five foot four and a half I weigh 120s and the 120s. And I was down to 95 pounds at the time, which meant I was looking pretty skeletal Yeah. And I remember being thirsty all the time. And I had a wicked when I say wicked. That was an understatement. I had a wicked yeast infection. And my mom took me to her gynecologist, and he took one look at me and said you're going for a glucose tolerance test. And that afternoon, you know, I drank like 12 or 16 ounces of pure sugar and felt like absolute crap afterwards. And I think my blood sugar was over 30 which would have been in like five 540 ish.

Scott Benner 24:39
Is there other diabetes in your family any chance? Nothing, nothing. Okay, no autoimmune. Nothing. You know, if you don't say something incredibly interesting in the next 45 minutes you're episodes called wicked yeast infection, right?

Bonnie 24:53
I hope to

Scott Benner 24:58
do your best Okay

Bonnie 25:02
because I will not want to be known.

Scott Benner 25:05
Okay, you might have trouble them

Did they give you I mean put you on insulin, they mentioned the hospital all that stuff happens.

Bonnie 25:18
Absolutely. I was admitted to the hospital almost immediately for 10 days and they started to put me on insulin almost immediately monitor my blood sugar, which meant not fingerprints because at the time, there was no such thing as a as a glucometer. We called it you know, I used to do urine testing. And the way they took blood, my blood sugar was they would actually take venous blood, which means they were poking my arms at least four times a day. I think I counted in 10 days I was there. I had blood taken out of my arms. I look like a druggie with all the tracks, you know, with track marks up and down my arm so they were taking blood at least four times a day, sometimes more. How

Scott Benner 26:03
long did it take for the dinner rolls to stop falling out of your pants? Isn't that interesting?

Bonnie 26:08
Oh, okay.

Scott Benner 26:10
I love your I love your I love your like, I watched her. I watched her little like mathematical mind go those words don't have anything to do with what we're talking about. That was very interesting. Did the yeast infection clear up pretty quickly?

Bonnie 26:20
Oh, absolutely. Yeah, okay, got that. We're speaking metaphors.

Scott Benner 26:28
I don't really know how to speak clearly. So we're gonna have to go that way. So that clear up very quickly with the introduction of the insulin. Absolutely.

Bonnie 26:37
I will say as I once told my husband, which could be the title of this show, metaphors are not my cup of tea. So

Scott Benner 26:46
funny. Okay, that's fine. I gotcha.

Bonnie 26:49
I am very, I mean, I think abstractly, spatially, but I don't think abstractly when we speak. I'm a very literal person. And so

Scott Benner 26:58
no, I know, I could see the look on your face. You were lost. You were like, how is this guy talking about you listen to this podcast, right? Oh, absolutely. You didn't you still weren't falling. You're just like, I'm done. Don't know what we're talking about. Okay, so.

Bonnie 27:12
So I'm hospitalized for 10 days. Yep. They put me on did not start on beef and pork insulin at that time, this would have been 1984. I made notes. And I was on what they called human insulin or recombinant DNA. And I guess I did pretty well on that. And, you know, and stayed on that for a long, long time. I could not tell you when I went on to MDI. But I know I started Lantis and Kuma blog, I'm gonna guess right after whenever lent as soon came out. Okay. And was on a sliding scale,

Scott Benner 27:53
sort of like the late 80s 89. And their summer.

Bonnie 27:57
Well, I it was, I want to guess it was after I moved to this country, which would have been in 90, yes.

Scott Benner 28:04
Oh, so they didn't Oh, you left Canada. That's how you upgraded your insulin, because they would have kept me on that regular and mph forever. Probably. Quite likely,

Bonnie 28:11
because things get tend to get approved there much later than they do

Scott Benner 28:17
here. Right. Right. Okay. So, what did you move for was for school? Yeah. Graduate School. Okay. Not a boy. Oh, good for you. Not yet. Oh, there's a move in here somewhere that involves the boy.

Bonnie 28:31
Oh, no, no, no, no, it's just yeah. met met him in graduate school. But yes, scotch? Oh,

Scott Benner 28:35
not yet for him. So you moved from Canada to what was the thing you noticed? You remember, going from regular and mph to just MB, you know, to Lantis and Humalog? Or something like

Bonnie 28:46
that? I don't remember. But it was more shots per day, because the regular you know, mph, you know, was only a twice a day thing. Yeah. Do

Scott Benner 28:55
you recall if that seemed like bothersome work? At all? No, no, it

Bonnie 29:00
was funny, because, I mean, so I became diabetic at 18 and a half. And I was telling a friend of mine, a gentleman I know who is a type two researcher here at the big university in my town. And I was telling him the story. And he said, when I said I became diabetic at 18 and a half, he said, Oh, what a great age to become diabetic. I'm like,

Scott Benner 29:24
okay, usually the argument I get is everyone says the opposite of their thing. So if they're young people go, Oh, it's terrible to be diagnosed. When you're young, it'd be better if you were older, you'd have more time to live without it. Bah, bah, bah, you go find an older person that was diagnosed when they're 40. And they go ah, you know, being diagnosed when you're older is terrible. Because you you know, this life without diabetes and life would have been much better if I was diagnosed when I was young. Everyone thinks the opposite of what happened to them would be better. So that's course

Bonnie 29:51
yeah. So yeah, being diagnosed 18 and a half and he said, What a great age to become diabetic. I think he was just thinking King in terms of not going through the teenage years of rebellion?

Scott Benner 30:03
was my thought it's a valid observation for sure. Not arguing with him. Yeah.

Bonnie 30:10
So for the most part, at least, when I was in the hospital, I remember meeting with a dietician, you know, my mom and I, and I was still living at home, obviously, I was in high school at 18 and a half, you know, and my mom did the cooking. And so we met with a dietician who sort of organized, you know, my life and my day and what I would eat. I mean, it wasn't a matter of telling me what I needed to eat, it was more of a matter of, what do you eat? And how can we kind of tailor that based on your insulin? You know, every meal was kind of like, you know, one, one carb, you know, one serving of bread, two servings of fruit, and told me all the sort of free veggies I could eat, which were green leafy vegetables and broccoli. And my mum said to my mum said to her, Well, what if we all ate this way, and we were never bad, poor ears, just saying, my mum asked her what if we all ate this way, and she said, you'd all be very healthy people, and

Scott Benner 31:09
go for that, then you left the country to get away from it. You're like, I'm getting out of here, all this.

Bonnie 31:14
So, you know, my mom, and I get this from my mom, my mom and I are really, you know, rule followers, right? And so it became my way of life. And I never, I was never the type of person to love, like giant, sort of pieces of cake with icing that's two inches thick. I was just never that type of person. And my mother always used to say, you know, thank goodness, she wasn't that type of person. Because, you know, according to her, she couldn't eat it now. You know. And, you know, according to my mother, I would rather which is true for me. Of course, I would rather eat a piece of pound cake than a piece of cake with a ton of icing, you know, regardless of the density of pound cake. No, no, I

Scott Benner 31:57
understand. I absolutely understand. I prefer, and I have like a sweet tooth when I get involved in that stuff. Like I can avoid it forever. But if you said to me, I think Oh, pancake. That's good. But I think of pancake is having icing on it. So I I don't Yeah, and you don't that's it's very interesting. Honestly, some people just have that, like, you get lit up by sugar. And so I think some people like almost have the opposite to it. It puts them

Bonnie 32:22
off. Oh, sure. You know, I won't pass up a piece of dark chocolate if you gave it to me. But small quantity, it's not like I will eat a whole chocolate bar of it. Yeah. All right. Candy Bar, as you call it. In this country, we call them chocolate. We used to call them chocolate bars. So I

Scott Benner 32:40
got overwhelmed by a pound of fudge recently, was brought in to the house. Then eventually, when it was gone, my wife goes where the hell's that fudge? I was like, you shouldn't have left it here. And she was where I'm like, in the house. Like, it's, it's not here anymore. But it was having like a little piece of it every once in a while. And then I looked back over, like the two weeks that it took to eat. And I was like, every once in a while, man. Anytime I walked through the first floor of the house. I was like, Oh, look, the fudge. Yeah, well, good. You're not You're not burdened. So no big deal. Did you make the big switch in your eating?

Bonnie 33:16
I did, you know, I kind of cut out, you know, a lot of fat in, you know, I used to sort of butter my bread. And I cut that out. You know, I mean, I learned that, you know, protein and fat can slow down the absorption. I mean, I have to say I was pretty, I thought reasonably educated until I listened to your podcast. No.

Scott Benner 33:36
So how long does that go for? Your living? Like sort of the way you just described? Oh, currently as well. Forever. When did you find the podcast? During COVID? Oh, just

Bonnie 33:48
a couple of years ago? Oh, yeah. Probably only two, two or three years ago. Alright. So

Scott Benner 33:53
you were MDI for a while eventually need to get to a pump. only like two years ago. Oh, okay. So you were MDI the entire time we were using Lantus and human log the whole time? Absolutely.

Bonnie 34:03
Through two pregnancies. Wow. You have

Scott Benner 34:07
to How are your kids? 18 and 2525. Oh, that's pretty close to mind. What was your control? Like through that time? No CGM, by the way.

Bonnie 34:17
No. Okay, so I've only been wearing a CGM, probably for five years. Okay.

Scott Benner 34:24
So what were your A onesies like? 18 years old till a few years

Bonnie 34:28
ago? Five years? Okay. 18 years old? I have no idea because I not pay attention. Well, who the hell could look up their medical record when when you're 18 years old? Oh, yeah.

Scott Benner 34:40
So it's like you're alright or you're not alright. When you go to the doctor's, it's either like, everything's fine. Or,

Bonnie 34:46
I mean, now they do a fingerprint when I go to the doctor, and they test my agency, and they come back and tell me, you know, 10 No, and that's only been in the last five or seven years when they can do an agency in the office. Before I would get a blood draw, never look up my medical record until I have no access to it on my phone before that I had no idea what my a one C was. Okay, that said, I, you know, as a rule follower, you know, I have to think I was in pretty good control. So up until the last five years, I mean, my a one CD was probably in the 60s low 70s.

Scott Benner 35:21
That's a guess you really don't know. Oh, no, I

Bonnie 35:24
looked at my age. Okay for you in 2019. And I had an A one C of 6.6. Okay, great. That's terrific. And then 6.8 7.2 and 2020. I was hitting 6.1 So it's always been in the sixes. And then I went on a pump

Scott Benner 35:42
are all those a onesies with a CGM? Yes. So you don't know what it was prior to the CGM, though. Okay. No, gotcha. You don't have any complications. Well, that's

Bonnie 35:54
a that's a sort of another story. I have other issues. Yes.

Scott Benner 35:59
diabetes related.

Bonnie 36:00
I would like to think, why would you?

Scott Benner 36:04
Why do you want to thank you.

Bonnie 36:05
I think I've had issues that are more prevalent in diabetics, but not an exact result of diabetes like solar or isn't shoulder

Scott Benner 36:15
see the cameras on I saw you reach up towards your shoulder so I know you're gonna say touch

Bonnie 36:19
my shoulders. Yeah. skin condition called granuloma. And you larae The

Scott Benner 36:26
dark spots, little rough patches of skin. Are they dark, their

Bonnie 36:33
little red, bumpy patches. It kind of looks like someone once said to me, oh, it looks like you because I had it on me on my legs, a few spots on my legs. So it looks like you've gotten to the poison ivy, it just looks like red, little bumpy, bumpy patches

Scott Benner 36:48
granuloma. annulare is a benign skin condition characterized by small raised bumps that form a ring with a normal or sunken center. The cause of granuloma annulare is unknown and is found in patients of all ages, condition tends to be seen in otherwise healthy people. Alright, I'm gonna go to the pictures.

Bonnie 37:08
Oh, that's interesting. It's amazingly innocuous. Like it doesn't bother me in any way except it just little rough patches of skin that for the most part are on my abdomen that I can hide. So

Scott Benner 37:21
it's not constant, though. Is that correct? I

Bonnie 37:24
have had spots of it for months at a time. And then they'll kind of fade away and reappear in other places.

Scott Benner 37:34
Do you do anything to them? Cortisol and cortisone or something like that?

Bonnie 37:41
Nothing. They don't itch sometimes, though. Ah, but really? Absolutely. Nothing. super interesting. Yeah. Okay. Okay.

Scott Benner 37:49
But you think it's, but I don't see anything here about it being diabetes related.

Bonnie 37:53
Okay, then maybe it isn't.

Scott Benner 37:56
I mean, I gotta be honest with you. There's no reason. If you're taking a picture of an old person's skin condition on their arm, there's no reason their bare breasts needs to be in it, too. I just want to tell that to Google right now. Little TMI. There's significant change. Like some people have it everywhere. And then some people don't. It's just like little patches. It's interesting.

Bonnie 38:20
Which is what I have. I have small patches here and there. Okay. Okay. Randomly located.

Scott Benner 38:25
Your kids have it? No. Okay. Would they tell you if they did as an adult? I always wonder that like, you know, you spend so much time connected with your children. Then they get older. Like, if something happened, they're not going to call you and be like, Yo, guess what? Like you stop learning about it. You know what I mean? Oh,

Bonnie 38:41
absolutely. Oh, I think my daughter at 18 She would probably still tell me things.

Scott Benner 38:47
Yeah. Okay. I gotta get rid of this elderly breast. Excuse me. All right. Yeah. That was enough of that. That made me feel older.

Bonnie 38:57
I've had Oh, yeah. Well, welcome to my world. Yes.

Scott Benner 39:00
That's not how I remember.

Bonnie 39:05
My endocrinologist has said, oh, yeah, like I've had other issues with I've had conditions with my eyes, which was not for the squeamish. But

Scott Benner 39:15
did you have to get the needles? No,

Bonnie 39:17
I had something really bad done to my eyes, which I have. I shouldn't say have Thank goodness. Touchwood I had a condition called Map dot fingerprint dystrophy.

Scott Benner 39:30
What the hell I'm gonna keep my browser open. If you're gonna keep talking. I'm gonna that's fine map dot dot fingerprint door it came right up. Not a lot of things. Is it serious typically, will flare up occasionally for a few years and then go away on its own with no lasting loss of vision. How does it appear?

Bonnie 39:51
incredible pain in your eyes because basically what happens is your cornea is made up of a series of layers and the outer Most Leia kind of comes away from the surface. And my ophthalmologists told me oh yeah, your your cornea is like a rug on a hardwood floor, flipping around, and I had a condition. So I had that condition. I was in extreme pain, I could not tolerate light, I had to wear dark glasses sit in dark rooms, until I had what's called a super k in both eyes, which is a super keratectomy,

Scott Benner 40:33
which, you know, offers procedure to remove the FFP meal and any redundant tissue.

Bonnie 40:42
So basically, they take a Dremel move, okay, and this is where if you're squeamish, just stop listening. They basically take a Dremel like instrument and remove the outer layer of the cornea of my eye,

Scott Benner 40:58
they grind your eye down a little bit,

Bonnie 41:01
which you don't feel okay. They gave me they gave me some valium for it. And then they put a bandage contact lens over your eye to kind of protect it and you regrow that outer layer in about two days. However, it's two days of like it in your

Scott Benner 41:20
high as a kite, right? It was like, hey, I'll just stay alive and not feel this. Ooh, I'm sorry, I need a second. That's terrible. It really took me like the Dremel thing. Like, I know what a Dremel is. But I was wondering if people didn't know what they were thinking but like, just like a, like a rotary sander, almost Yeah. Do you get to see it? Or is it healed? But

Bonnie 41:44
I it's just blurry.

Scott Benner 41:46
I mean, that by the time they uncovered, is it healed? Or do you see it like bloody or weird or anything?

Bonnie 41:51
It's, it's not bloody at all. Okay? I mean, it's basically a five minute procedure in the ophthalmology sort of center, and I go home, and I then take Viking in for two days. Because if you've ever gotten a scratch on your cornea, sure, and you know, the pain that that causes, imagine this pain and multiply it by about 1000.

Scott Benner 42:13
Every after you your eyeball just got tattooed. You know what I keep thinking, who thought of this? Like, who was the first physician who said, you know, we can do for people with this condition? Why don't we grind a layer of their cornea off? Somebody else went, Oh, what a wonderful idea. Let's do that. Like, seriously? Who's the because it helps you? Right? Oh, oh, yeah. Who thought of that? That's genius.

Bonnie 42:38
I mean, there was one point when I was in so much pain before I had the procedure done. I was like standing in my living room that night. And I said to myself, I was in so much pain. I said to myself, if I throw myself through this plate glass window, okay, I didn't want to kill myself. And I said, if I throw myself through this plate glass window and cut myself with these shards of glass that might take my mind off the pain I'm having in my eye. Geez,

Scott Benner 43:07
I can't imagine that. But that's not necessarily from diabetes, either. Is it?

Bonnie 43:13
I don't think so. I know my my ophthalmologist says, Oh, this is really common. I'm like, oh, common in your profession. Yeah, but not for the rest

Scott Benner 43:22
of us. The rest of us don't find this common at all. No, not at all. Okay, she gets a little skin thing. You got the eye thing. You got the diabetes. What else?

Bonnie 43:30
frozen shoulder shoulder? Yeah, I mean, that's probably about it right? At this stage of my life.

Scott Benner 43:37
Almost said right now. Oh, it's interesting. Because you're in a really, you're in a really kind of flux place. Because the way you stayed so long, and that Humalog Lantis. No CGM thing was and then you're saying the podcast made you? Did you get the podcast before the CGM or the CGM before the podcast?

Bonnie 43:56
CGM. I was on the FreeStyle Libre before the podcast. Yes.

Scott Benner 44:02
And when you got that was it to you just merely like, oh, I don't have to, like poke my fingers anymore? Or did you see the bigger picture?

Bonnie 44:09
It was mind blowing. Because I was, you know, I was on MDI for four shots a day, sometimes five, because just to maintain better control. And it was mind blowing that I could see my blood sugar constantly. It was

Scott Benner 44:29
so you liked the numbers. Obviously, you've brought this up already. So what what did having the data do for you?

Bonnie 44:35
It just brought me in better control. I mean, it just, you really added another layer to to my my ability to control things.

Scott Benner 44:45
It's funny because I asked that question to see if someone will pop up and be like this exact thing happened and this is what led to this, but it really isn't. It's just seeing it and then being able to see cause and effect more visually. Right and Don't you just start making different decisions because you know what's gonna happen? Exactly.

Bonnie 45:04
I mean, the amazing thing is your podcast. Oh my goodness. Now that I'm 57 and no longer sort of, you know, at the control of my being affected by hormones.

Scott Benner 45:19
Oh, okay. That part's over now. Oh,

Bonnie 45:23
yeah. No one ever told me that hormones could affect my blood sugar. Nobody ever told me you lived

Scott Benner 45:31
all that time not knowing what all that fluctuation was correct. How did you manage through pregnancy then? Because insulin needs really racking Oh, they don't even know. I guess then. Well,

Bonnie 45:42
I yeah, I didn't have a CGM, then I had really good. Lots of dogs, you know, because I was in a high risk clinic, not just with my son who was born when I was 32. So I was at a high risk clinic with him. And then when my daughter was born, I was 39. So I was sort of hit the

Scott Benner 46:01
were they turning your insulin up during the pregnancy? Oh, absolutely. Okay, but they were just doing it based on bloodwork.

Bonnie 46:08
Based on my little form, you know, my little blood glucose thing book I would fill out. Oh,

Scott Benner 46:16
oh, okay. So you were you were testing with a meter writing down your book, and then they were they it was as simple as these numbers are a little high, we're going to give you more insulin. That's all it was. Kids came out, okay. Were they real big or anything?

Bonnie 46:31
Um, my son was the size of a two month old.

Scott Benner 46:36
That's pretty common, especially back then for people with diabetes.

Bonnie 46:39
He was and you know, they were not alarmed by it. He was 10 pounds. 15 ounces. Okay. Yeah. And so they said, you know, he'll be fine that he was in the PICU for the first 24 hours because they wanted to watch his blood sugar's. And they said, you know, he will gain weight, like every baby does. But at a slower pace. All the other babies will catch up to him pretty quickly. Yeah, right. Exactly. And my daughter was not that big. And yeah, I mean, basically, my doctors told me, and then they took pretty good care of me, except for my endocrinologist went on vacation, and I had some other someone else, you know,

Scott Benner 47:15
bye, bye, I'm leaving.

Bonnie 47:18
On vacation, he went on vacation for a week or two. And someone else had to fill in for him during one of my visits, and I would go see a doctor, like every week, if not two weeks, you know, every week or two. And I was in a case. So he went on vacation, and someone else was filling in and he said, Oh, yeah, we're gonna change your insulin. And we're gonna do this, this, this, this and this. And I looked at him and said, No, you're no

Scott Benner 47:42
wait for the guy to come back. Don't worry. Where do people vacation from the Midwest? Would you go to a lake or something?

Bonnie 47:47
I suppose you could you go south where it's warm. I was gonna say, because

Scott Benner 47:51
you don't have access to the, to the beaches and like, or you got to go on long flights to get to water.

Bonnie 47:59
We have the Great Lakes. You

Scott Benner 48:01
don't know. It's not the same thing. It's like I had a little. I had a little girl from Canada told me about a bagel she was eating. And I was like, Have you ever been in New York? And she goes, No, I'm like, you've never had a bagel. You never know what you're talking about. Seriously? You don't know if you haven't in New York bagel is a different thing.

Bonnie 48:13
It's like a mantra. It's like a Montreal bagel.

Scott Benner 48:16
Yeah, well, we'll say. But I'm saying like, when you're on the coasts, people vacation generally speaking on islands and at the beach and things like that, because that's the kind of like, it's close. And it's accessible. Every time I've met somebody who's coming from the Midwest, the first thing they were like is, can we see the ocean? And I'm like, Yeah, me if you want to. It's only going to be exciting for 20 seconds. So

Bonnie 48:40
yeah, for the most part, we do vacation by airplane.

Scott Benner 48:44
You have to write like, you can't like just drive somewhere. So anyway, it's not the lakes

Bonnie 48:48
up there in COVID. So we did vacation, a little Airbnb, just to get away. Just to get away, which was like 20 minutes from here on the lake. Let's

Scott Benner 48:57
drive to a different house and sit inside of that one for a while. Okay,

Bonnie 49:00
well, those are the lakes.

Scott Benner 49:03
So okay, so you're using a CGM, things are coming together for you. But you're not making any big leaps. Right? Like

Bonnie 49:10
not huge, significant. Yeah, my blood sugar mighty onesies are probably down in the sixes.

Scott Benner 49:15
Yes. That's amazing. That's really fantastic. But are you still a good eater all these years later? Oh, hell yeah. Yeah. Then stuck. That stuck with you that one conversation with that doctor? Absolutely. And did your mom changed the whole family over like she talked about?

Bonnie 49:30
Oh, yeah. Oh, it wasn't like she was gonna cook for me separately.

Scott Benner 49:33
There's no special chef coming in and handling the different. Oh, no, no. Okay. So you find the, I guess, you say because of COVID. You found the pockets. You're just bored.

Bonnie 49:44
I do like to exercise and I'll go for long walks. And I used to go for walks while watching you know, shows on streaming services. I don't know if I'm allowed to say whatever. They're good. You know, Netflix.

Scott Benner 49:59
I'm sorry. I didn't realize Go ahead. I got you know, yeah, I

Bonnie 50:01
would watch a show while I walked outside. And then I realized, yeah, this is a little dangerous when I'm walking on streets. And so I decided I need to find podcasts to listen to so I'm not impacted visually as

Scott Benner 50:16
a person walking along watching television on your phone in front of your face. Did you ever walk into anything? No. Ever get hit by a car or close? No, I

Bonnie 50:24
mean, you know, I had a few mishaps on sidewalk, you know, on curbs and sidewalks.

Scott Benner 50:31
Midwest could have been a tractor. Who knows? It's so Okay, so you you look for Park is it? Is that thing that I hear people say that that happened? You were they go? It just hits them one day they go, oh, there's podcasts about everything. I bet you there's one about diabetes. Finger. Yeah. That's how it happens. Right? That crazy.

Bonnie 50:48
Finger. And so you know, my search for that then led me to, you know, the Facebook search and this group on Facebook, the private group on Facebook. And it's absolutely amazing. So yeah, so through this podcast, you know, learning about pumps, and I'm like, oh, pump. Oh,

Scott Benner 51:07
no idea. Interesting. Yeah. Which pump do you have now?

Bonnie 51:10
I use Omnipod. Okay. Yeah, five.

Scott Benner 51:15
So I saw I basically I sold that to you. So if they're listening right now, they should keep buying their ads. Yeah. Right. But But yeah, that's amazing. So because because you're so I mean, so many decades into it. Right? It seems uncommon that you would have made like the modernization happen. But what happened? You heard people talking about it, and you were just like, why am I not doing this? Or?

Bonnie 51:38
Yeah, and I'm a real researcher before I do something, so I have to do a lot of research, which means internet research prior to doing something but at the same time, you know, I love to exercise and I used to, you know, currently I will walk four or five miles a day, every day. That's my, those are my off days was that take an hour and 10 minutes ish. And which is a perfect amount of time to listen to your podcast, and that's on my off days and on my on days, I will bike ride, I will row I will cross country ski. I used to be really avid rower until I had hip flexion hip flexor issues. I can go off on a whole tangent about rowing. But you know, I used to, and I still do. I used to always hit lows. Well, I would do intense exercise, I would always go low. Okay. My endocrinologist said to me, she said, you know, we can help that and I'm like how she said, a pump. I'm like, Okay, so after her telling me that for a couple visits in a row, I finally decided, okay, let's do a pump.

Scott Benner 52:51
Go for it. Wow. Let's do you think you'll do an algorithm ever? I do. Oh, wait, you're doing Omnipod? Five Omnipod? Five. Oh, not that the sun. Okay. I'm sorry. And that is helping you with your exercise? To a degree. Yeah, it's tough. Even if you do if you do a really vigorous exercise, there's still things you need to do. Yes. Listen, Arden got low last night packing her room up to leave college. All she was doing his packing bags, like doing dishes, loading her car. And she's like, Dad, I got low overnight. And she's like, it was hard to get it back up. And I said no, I I thought so I said we probably should have done something little restriction of your insulin. And she's like, didn't the algorithm and because she's using Iaps right now. And I looked and it had been taking her it was taking her Basal away for ever. And still the exercise like, you know, got got to her got her like to like a 55 blood sugar at some point. Oh, yeah,

Bonnie 53:49
absolutely. Like me washing my car or doing yard work. I will always go low. Okay, that said, I love to run low. Hello. I mean, I love to run low. I love to run in, you know, the 90s. I mean, I don't run as in go running. I love to stay low. But for me, too. And I will go into the 60s almost every day, once, at least once a day. Because for me, it's easier to control blood sugar in the 60s and just nudge it back up, then for me to deal with high blood sugar and bring it back down.

Scott Benner 54:22
So it's something you learned on your own or something you heard from the podcast,

Bonnie 54:26
for the most part learned on my own. I was doing that. Sorry. No, no, no, I

Scott Benner 54:30
don't I mean, that you. My expectation is that in 30 years, you would have figured that out. Yeah, you know what I mean? Yeah, by the way, I'd like to be really clear about something in case I haven't been. I'm not saying anything magical in the podcast. It's just that kind of common sense stuff about insulin management that people don't talk about, so nobody hears about it. So the next thing you know, it's 30 years later, and they, you know, been just been doing it like this forever. That's what you

Bonnie 54:57
are saying. Things that like I said Add things my doctor never told me, right? Yeah, like, here's another example Pre-Bolus I

Scott Benner 55:06
am always stunned by how few people have ever thought about timing their meal and so

Bonnie 55:12
39 Well, I've been Pre-Bolus thing for a while now. Okay, so let's say, I've been Pre-Bolus thing for two years. Seven years, no one ever told me to Pre-Bolus

Scott Benner 55:24
just match up your insulin a little bit over the phone. What I meant was that it's not like, it's not like I got on the podcast, I'm like, Alright, everybody, listen, I'm going to tell you how to jump from universe to universe. It's, you know, like, I mean, it's not, it's not crazy, like, Oh, my God, only this one guy knows these things, like people, people, the problem I found with the diabetes space, is that people come in, obviously, they don't know anything. They're mostly left to figure stuff out on their own, some do, and go their own way. And some don't and live in a struggle. Neither of those two people are telling everyone else, Hey, have you considered Pre-Bolus And your meals, like you either don't know when you're gone, or you, you know, figured it out, and you're back to your life, and it's not your job to tell other people. I just was in candor, I was just one of the first people with a wide audience who was willing to say, this is how insulin works, you should probably understand this, you know, and nobody else would say, by the way, I knew people who understood it, people who had diabetes, who were in the diabetes space and writing blogs, and like making money and doing all the things, but they would never tell people how they manage their blood sugar, and they would hide behind. Well, everybody's different. You know, and I'm like, That's not why you don't want to take responsibility for saying this out loud. That's what this is, you know, just like through the same goddamn reason some doctors won't tell you and they know. Well, yeah, it's

Bonnie 56:48
the same reason I don't go on a job site and tell tell a contractor, they're not OSHA compliant. You know, I don't want the responsibility of it. Just

Scott Benner 56:55
look the other way.

Bonnie 56:56
It's fine. No, no, basically, no, serious. No, I

Scott Benner 57:00
understand. Yeah. No,

Bonnie 57:02
I mean, I don't want the liability. I mean, there's actual liability.

Scott Benner 57:06
Yeah, one of the things that actually, you know, I say sometimes some of the little things you'll never realize that help people with diabetes through me, cell phones, cell phones, were a big deal, because I can now talk into this microphone, and you can hear the thing without too much trouble or expense, like so having cell phones, proliferates, podcasts that ends up helping people with diabetes, being podcast becoming something that people are like, understand now and their normal allows me to say nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And then we're all kinda like, like, in this day and age, we're all good with that. We all have agreed as a society, we know what this means. There is, you know, maybe no shortage of 10s of 1000s of podcasts telling people how to manage their health. And at some point, during each one of them, somebody goes, Hey, this isn't advice. I'm just telling you what I do. But 20 years ago, if you would have written a blog, and said, Hey, here's how you're Pre-Bolus, someone would have come along and said, You can't give medical advice to people. And if you would have said, I'm just sharing my experiences, they would have said, No, you're giving people medical advice, because society hadn't gotten to this point yet. So it's one of those simple ways that I now get, I mean, uncountable numbers of messages, emails, and you know, whatnot about people are like, Oh, my God, look, my one see a six one, like, so cool. Like, I've never in my life, I didn't expect to hear you saved my life 1000s of times. Because, I mean, who knew that was gonna happen? But on the other side of it, I don't feel like I did. I feel like I just pointed when you should know about that, you know, so. And,

Bonnie 58:50
yeah, and It shocks me that the that my doctors, I mean, I haven't had a huge number of doctors not tell me this. And I don't mean to diss my doctors either. Don't, don't get me wrong. Yeah, I

Scott Benner 59:02
want to say I don't take you that way. And I also hope that doctors don't take it that way. Then Jenny and I are recording a series right now. We're pretty far into the recording of it. It'll come out next year. I'm going to actually tell you how far we are into it right now. It's in this folder here. And then this but there's a lot of folder so that all these folders, I actually have a folder that's called needs organizing. Do you think that's good news? It's not it's bad news. Jenny and I have now 1234 We've now recorded five episodes of something that we're going to call Grand Rounds, which is just talking to physicians about what people with diabetes need from them. And we don't imagine that every you know, we're going to be able to attract all the doctors, but some will. And the conversations are set up so that they're talking to To the doctor about like, Hey, this is what you should be expecting, and what you should be doing and what these people deserve. But at the same time, if you listen from a patient's perspective, what you're hearing is, this is what I deserve. This is what I should be asking for. This is what I should be expecting. And, you know, Jenny gets fired up, like for people who've only only, like, heard her like, in, like pro tips or bold beginnings, and she's all like, you know, Wisconsin and like, Oh, it's okay. Like, like it all sweet and everything, you shouldn't see how upset she gets when she thinks about people with diabetes not being given reasonable information. And as we're having this conversation, it's ringing in my head, are we going to turn doctors off to this? And what I eventually figured was, they need to, like, take their part of this responsibility here, like I can't hold their hand and tell them they're doing a great job, because a lot of them just aren't. And if hopefully, some of them will hear it is, you know, my expectation. Yeah.

Bonnie 1:00:57
You know, I mean, I don't know how open doctors are to critique. And as architects, we are always open to critique. But yeah, I mean, I haven't gone through this for 39 years, I'm amazed at what my doctors haven't told me. But by the same token, I understand that, you know, they're looking for like, you know, they're looking, I want to say for big picture, serious things like, Have I lost circulation my feet, I mean, you know, yeah, no issue, then, by

Scott Benner 1:01:27
the way, you might not lose the circulation your feet, if you tell me how to Pre-Bolus My friggin meal. Like, it's and that's the thing we talked about this series is how, thank you how they're so willing to see you in a in an emergency room situation and go, oh, this person, man got a high once he blood sugars all replaced, they don't know what they're doing. They gave up they don't even understand like they're willing to talk about people like that. But they're not willing to take responsibility for not putting the person on the right path. 20 years before they ended up in the emergency room. Being proactive. Yeah, it's your fault, not their fault. Anyway, that's what that series is going to be like, and she gets, I think it's, sometimes we're all upset. We like stop the recording, we sit back, like, Oh, my God.

Bonnie 1:02:08
I remember when I was pregnant, and they said, you know, it's critical that you check your blood sugar two hours after a meal, and that it'd be within normal range, like around, you know, 90 to 110 or something like that. And I'm like, okay, but you haven't told me how to do that. Oh,

Scott Benner 1:02:23
I do that. Yeah. Thank you. Is there a way you would say that would work for that? Because I've had diabetes a while and it's never gone that

Bonnie 1:02:31
way. Right? And so yeah, let's, you know, tell me means and methods. And I'll, I'll give you an outcome, right? Yeah.

Scott Benner 1:02:38
i It's all I say, it's all I'm saying, by the way, and I'm not. You know, it's funny, as we talked about how, how the Internet matured society about their expectations about what was being said to them, you things change. I would say as recently as four years ago, I would be told by doctors that I was Doctor bashing. Oh, and I guess that would have actually, there's a great episode called listen to the doctor where an endo comes on, and admits to listening, lovely woman comes on to tell me how she started to listen to the podcast and was like, Oh, my God, this guy's Doctor bashing, and then kept listening. And eventually says in the episode, you know, a large part of how I now treat my patients with diabetes is from you in this podcast. And I was like, that's so cool. But anyway, that nobody tells me I'm Doctor bashing anymore. Because society's moving forward, like all of a sudden, you know, back then it was like you're complaining, you're blaming us? And I'm like, seems like you have some responsibility in this. And only four or five years later, people don't think like that anymore. Now they're like, Yeah, I deserve for someone to give me good information. I'm dragging people's expectations into the future is what I'm what I'm trying to do like, like you should expect better than what you're getting. Yes, you have to put the work in, but to your point, which you've made like six times now, if I don't know the tools, I can't write, I can't do the work, you know, right. That's it super simple. It's all very simple. People would just listen to you and be fine. But no, one of my house listens to me. Anyway, I can't wait to put this series out and hear through the grapevine. How I'm making fun of doctors, but

Bonnie 1:04:21
I think people need to understand that, you know, people are critiqued at least, you know, as architects, we critique each other. We go through school getting critiqued, and, you know, critique is not necessarily positive or negative. It's just here's, here's an analysis. Yeah, this is

Scott Benner 1:04:43
my perspective of what you're doing the thing you're doing. I listen, I gotta tell you for any doctors listening. I don't mean to curse because you've been so nice lately, but I take it pretty frequently from people are like this podcast. He doesn't do this right. He doesn't do that. Right. Why does he talk so much? How come you won't Let them talk. I'm like, yeah, I gotta hear you gotta hear it. How's that?

Bonnie 1:05:08
I can. I can be salty if you really want me.

Scott Benner 1:05:11
You're a Canadian in the beginning. So I know you guys are savvy, you don't shoot people. You like to curse. That's pretty much what I know about Canadians

Bonnie 1:05:18
I can I can get pretty salty when I'm coxing races.

Scott Benner 1:05:22
You have to hear the episode that came out today. It's called Canadian clown car. It's nine year old little girl. So her mom sets up the recording like it's for her. And you I mean, you've now been through this with me. I don't put almost any effort into making sure you're here. So it's really on you to show up, you know? And so the microphone comes on. I go Hello. And it's this little girl's voice. And I was like, I'm like, going through my notes real quick. I'm like, I'm online. Talking to a little kid on that like, what's going on? I think the mom just set me up like she just booked for herself and then stuck the kid on the show. This conversation it's a really great actually with this like nine year old little girl. But she's Canadian. And you know, I do all my like better Canadian humor. Whether I was like, you know, dog sleds, that's how you get things places. They don't grow apples in Canada, do they? She's like, Yeah, I've been to an orchard. I'm like, they're no orchards and Katelyn. She's like, it's their arm, like, I don't understand. I'm like, Can let's just a big piece of snow. And I was like, I don't even know how you're on this call with me. You live in an igloo. And you know, like, that kind of stuff. And I was like, at one point, I go, and I was like, oh, wait a minute. I'm like, your Santa lives. She goes, No, that's the North Pole. And I'm like, those aren't the same place. And she's like, here's what we're doing all that. And at some point, she says something about the cars in America. And I said, How do you know there are cars in America? And she goes, Well, there are and I was like, if you ever been here and she goes, No one I'm like, Are you sure? And I got down to like an existential moment with a nine year old where she goes, Yeah, I guess I'm not sure that there are cars in Canada. And I was like, right? As like, for instance, are you in a room right now? And she goes, yes. I said, is the door closed? And she goes, yeah. And I said, Is there a clown on the other side of the door? Oh, boy. And she goes, You should hear she goes, No.

Bonnie 1:07:15
She's, she's had nightmares. There

Scott Benner 1:07:18
might be and I was like, right. Anyway, I love Canadians. Alright, so I am on a super tight schedule today. So I wouldn't I need to ask you the question a little earlier than I normally would. What we haven't talked about that we should have. Oh, no,

Bonnie 1:07:34
I think I think we hit everything we did. Okay. 10, tangents and otherwise, three words. I

Scott Benner 1:07:41
don't know. I didn't write them down. Because I didn't want to be like, did you say starkly? At some? No, not starkly. extact? What did you say at 1.0? I

Bonnie 1:07:49
can't remember all tangents. Is

Scott Benner 1:07:51
that what you did? I know. That was insulting. Like, she's like, Oh, does he not know tangent? Okay, you're

Bonnie 1:08:01
asking me to recall. You don't have to, I'll go back that I learned, you know, orally and I'm a visual learner. So I have to think now.

Scott Benner 1:08:12
I just thought of the worst joke that I'm not gonna say. Maybe just horrifying. I'm not gonna say I'll tell you when we're done recording. So, but yeah, we haven't missed anything big picture stuff like, like, you know, it's funny. I meant to say this earlier. I asked you why you wanted to come on the podcast. And really your answer was, I've just had experiences I'd like people to know about them. I think that would help them. Yeah, I always think someone's gonna say something like, super specific. And they never really do. It's always just like, I think if people listened to what happened to me, it might help them. And which I think is lovely. You know? Yeah, yeah. Here's some free advice for other podcasts. I think were some other podcasts go wrong is they decide this episodes about this specific thing. And then they try to talk about this one idea for an hour. And I'm like, that's like four minutes A Conversation. You know what I mean? Like, you can't, you can't break this thing down that far. Like it just it's boring. Oh,

Bonnie 1:09:09
I know, I know what I wanted. That when I first went on the pump, I was on dash. Because the Omnipod five algorithm was out. And I was shocked beyond belief that my blood sugar could be straight lines.

Scott Benner 1:09:27
The first time it happens, it throws people off.

Bonnie 1:09:32
Loop shock. I mean, quite literally, you could have picked my jaw up off the floor. I

Scott Benner 1:09:41
have a graph, a graphic when I speak in person and I go, Hey, here's a graph, 24 hour graph and this little girl, and it's pretty choppy, like really choppy kind of all over the place. And I said I spoke to her mother privately and we fixed her Basal insulin and then the next graph comes up and I go in, that's her blood sugar. Next 24 hours. And they are people are just like, wait, what? And I was like, yeah, so it's bowls them over when they first see it. It's all about timing and amount. So, absolutely.

Bonnie 1:10:10
I could not believe I could ever have blood sugars like that.

Scott Benner 1:10:15
Yeah, it's not that difficult to accomplish once you know how to do it, have a couple tools and get me takes time. Don't get me wrong, it's not easy. It takes time. And

Bonnie 1:10:23
you know, my, my endocrinologist is really good at sort of really sort of on a granular level really dialing up and down my Basal at least at the time when I was not on an algorithm, really dialing my basil up and down to get me that straight line. utterly shocked. Yeah, so yeah, so the people that insolate I have to say and other pump makers. I applaud you that said, you know, don't you know, when I go low, don't take away my basil forever and ever. Well, don't you know, it's frustrating because I'm on so little insulin a day, I probably take on average, like 22 units a day total insulin. And so when I go low, you take away my basil, but I don't need the basil. Now when I'm low. I need it like in an hour, and you've taken away all my basil and I'm like, Oh, I'm gonna It's too it's

Scott Benner 1:11:15
too late now. Yeah, yeah. Well, the algorithm Listen, first go round for these algorithms. I can't wait to see them in a few more years, sir. So

Bonnie 1:11:23
absolutely. So the low life intern who's sitting and listening to all your podcasts?

Scott Benner 1:11:28
Make a person listen. Also, don't call them a low life. I know some of them. They're lovely.

Bonnie 1:11:34
I'm sure they are. I'll say I'll say the love. Yes, exactly. I'm sorry.

Scott Benner 1:11:41
So you believe that in every company by the way, this is true. I know this is true. But in every company for people who've never thought about this, there's somebody whose task it is to listen to this podcast. Oh, yeah. Yeah, that happens. And then they talk about it in meetings and, and stuff like that. I have a great story. I wonder if I'll ever be able to tell it about how Medtronic became an advertiser. I don't know off to see if I can tell that stuff to think about. All right. Thank you so much to go. Hold on one second for me.

Jalen is an incredible example of what's so many experience living with diabetes. You show up for yourself and others every day, never letting diabetes define you. And that is what the Medtronic champion community is all about. Each of us is strong, and together, we're even stronger. To hear more stories from the Medtronic champion community or to share your own story visit Medtronic diabetes.com/juicebox And look out online for the hashtag Medtronic champion. Thank you so much for listening. I hope you enjoy my full conversation with Jalen coming up in just a moment. A huge thanks to Dexcom for supporting the podcast and for sponsoring this episode dexcom.com/juicebox Go get yourself a Dexcom g7 right now using my link. I'd like to thank cozy Earth for sponsoring this episode of The Juicebox Podcast and remind you that using my offer code juicebox at checkout will save you 40% off of your entire order at cozy or.com. That's the sheets, the towels, the clothing, anything available on the website. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com. A diabetes diagnosis comes with a lot of new terms, and you're not going to understand most of them. That's why we made the finding diabetes, go to juicebox podcast.com up into the menu and click on defining diabetes, to find the series that will tell you what all of those words mean. Short, fun and informative. That's the finding diabetes. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Thanks for hanging out until the end. Now you're gonna hear my entire conversation with Jalen don't forget Medtronic diabetes.com/juice box or the hashtag Medtronic champion on your favorite social media platform. My

Speaker 1 1:14:25
name is Jalen Mayfield. I am 29 years old. I live in Milwaukee, Wisconsin, where I am originally from Waynesboro, Mississippi. So I've kind of traveled all over. I've just landed here in the Midwest and haven't left since ice.

Scott Benner 1:14:40
How old were you when you were diagnosed with type one diabetes?

Speaker 1 1:14:43
I was 14 years old when I was diagnosed with type one diabetes 15 years

Scott Benner 1:14:47
ago. Wow. Yes. Okay. 14 years old. What do you like? Do you remember what grade you were in?

Speaker 1 1:14:52
I actually do because we we have like an eighth grade promotion. So I had just had a great promotion. So I was going straight into high school. So it was this Summer, heading into high school

Scott Benner 1:15:01
was that particularly difficult going into high school with this new thing? I

Speaker 1 1:15:05
was unimaginable. You know, I missed my entire summer. So I went to I was going to a brand new school with, you know, our community, we brought three different schools together. So I was around a bunch of new people that I had not been going to school with. So it was hard trying to balance that while also explaining to people what type one diabetes was,

Scott Benner 1:15:25
did you even know? Or were you just learning at the same time, I

Speaker 1 1:15:29
honestly was learning at the same time, my hometown did not have an endocrinologist. So I was traveling almost over an hour to the nearest, you know, pediatrician, like endocrinologist for children. So you know, I outside of that I didn't have any type of support in my hometown. Was

Scott Benner 1:15:46
there any expectation of diabetes? Is somebody else in your family have type one? No, I

Unknown Speaker 1:15:51
was the first one to have type one in my family.

Scott Benner 1:15:52
And do you have children? Now? I do not know. Do you think you will one day filled, you're

Speaker 1 1:15:58
gonna validate. But right now, I've just been traveling books at all my career myself. So

Scott Benner 1:16:02
what do you do? What's your career? Yeah, so

Speaker 1 1:16:05
I am a marketing leasing specialist for student housing companies. So we oversee about 90 properties throughout the US. So I've been working for them for about eight years now. And you get to travel a lot in that job. Yes, I experience a lot of travel. It's fun, but also difficult, especially with all your type one diabetes supplies, and all your electronics. So it's a bit of a hassle sometimes.

Scott Benner 1:16:27
What do you find that you absolutely need with you while you're traveling? diabetes wise,

Speaker 1 1:16:32
I have learned my biggest thing I need is some type of glucose. I have experienced lows, whether that's on a flight traveling, walking through the airport, and I used to always experience just being nervous to ask for some type of snack or anything. So I just felt, I felt like I needed to always have something on me. And that has made it my travel a lot easier.

Scott Benner 1:16:53
So growing up in the small town, what was your initial challenge during diagnosis? And what other challenges did you find along the way?

Speaker 1 1:17:03
Yeah, I think the initial one, I felt isolated, I had no one to talk to that it was experiencing what I was going through, you know, they were people would say, Oh, I know, this is like hard for you. But I was like, you really don't like I, I just felt lonely. I didn't know you know, people were watching everything I did. He was like, You can't eat this, you can't eat that. I felt like all of my childhood had been, you know, I don't even remember what it was like for life before diabetes at this point, because I felt like that's the only thing I could focus on was trying to do a life with type one diabetes,

Scott Benner 1:17:38
when you found yourself misunderstood? Did you try to explain to people or did you find it easier just to stay private?

Speaker 1 1:17:45
I honestly I just held back I didn't really like talking about it. It was just it felt like it was just an repeating record where I was saying things and people weren't understanding it. And I also was still in the process of learning it. So I just, you know, kept it to myself didn't really talk about it when I absolutely had to,

Scott Benner 1:18:03
did you eventually find people in real life that you could confide in?

Speaker 1 1:18:07
I think I never really got the experience until after getting to college. And then once I graduated college, and moving to an even bigger town, that's what I finally found that was people were I was like, Okay, there's a lot of other people that have type one diabetes. And you know, there's a community out there, which I had never experienced before,

Scott Benner 1:18:28
is college where you met somebody with diabetes for the first time or just where you met more people with different ways of thinking. So

Speaker 1 1:18:35
I met my first person with diabetes, actually, my freshman year of high school, there was only one other person. And he had had it since he was a kid, like y'all once this was like, maybe born, or like right after that timeframe. So that was the only other person I knew until I got to college. And I started meeting other people. I was a member of the band, and I was an RA. So I was like, Okay, there's, you know, there's a small handful of people also at my university. But then, once I moved to, I moved to St. Louis. And a lot of my friends I met were like med students, and they were young professionals. And that's where I started really getting involved with one of my really close friends this day. He was also a type one diabetic. And I was like, that's who introduced me to all these different types of communities and technologies, and which is really what helped jumpstart my learning more and with type one diabetes.

Scott Benner 1:19:26
Do you think I mean, there was that one person in high school, but you were young? Do you really think you were ready to build a relationship and around diabetes? Or did you even know the reason why that would be important at the time? I

Speaker 1 1:19:37
didn't know you know, I honestly didn't think about it. I just was i Oh, there's another person in my class that's kind of going through the same thing as I am but they've also had it a lot longer than I have. So they kind of got it down. They don't really talk about it. And I was like, Well, I don't really have much to like connect with them. So sorry. Connect with them all.

Scott Benner 1:19:57
Yeah, no. So now once your world expands as far as their From people, different backgrounds, different places in college, you see the need to connect in real life, but there's still only a few people, but there's still value in that. Right?

Unknown Speaker 1:20:09
Correct.

Scott Benner 1:20:10
What do you think that value was at the time?

Speaker 1 1:20:12
I think it was just what making me feel like I was just a normal person. I just wanted that. And I just, I needed to know that like, you know, there was other people out there with type one diabetes experiencing the same type of, you know, thoughts that I was having.

Scott Benner 1:20:27
When were you first introduced to the Medtronic champions community? Yeah,

Speaker 1 1:20:32
so about two years ago, I was, you know, becoming more I was looking around and I noticed, stumbled upon the Medtronic community. And I was like, this is something I really, really, I kind of need, you know, I said, I, all throughout these years, I was, you know, afraid to show my pump. You couldn't, I would wear long sleeves, like, didn't want people to see my CGM, because I didn't want people to ask me questions. And you know, I just felt so uncomfortable. And then I noticed seeing these people really, in the Medtronic community just they embraced it, you could see them, they weren't afraid to show it. And that was something I was really looking forward to. How is

Scott Benner 1:21:08
it knowing that your diabetes technology is such an important part of your health in your care? And having to hide it? What did it feel like to have to hide that diabetes technology? And how did it feel to be able to kind of let it go, I

Speaker 1 1:21:21
will refuse to go anywhere, like, Hey, I would run to the bathroom, I just didn't want to do it in public, because I felt like people were watching me. And that was just one of the hardest things I was trying to overcome. You know, I was fresh out of college, going into a young professional world. So you know, going out on work events and things like that. I just, I just didn't think I just didn't think to have it out. Because I was so afraid. But then, once I did start, you know, embracing it and showing it that's when the curiosity came and it was actually genuine questions and people wanting to know more about the equipment that I'm on, and how does this work? And what does this mean? And things like that, which made it kind of inspired me? Because I was like, Okay, people actually do want to understand what I'm experiencing with type one diabetes.

Scott Benner 1:22:06
What did you experience when, when the internet came into play? And now suddenly as easy as a hashtag, and you can meet all these other people who are living with diabetes as well? Can you tell me how that is? Either different or valuable? I guess, compared to meeting a few people in real life? Absolutely.

Speaker 1 1:22:23
I think if you look back from when I was first diagnosed to now, you, I would have never thought of like, you know, searching anything for someone with, you know, type one diabetes. And now it's like, it's all I see, you know, you can easily search Medtronic champions, and you see people that pop up, and you're like, wow, look at all this content. And I think that's something that that kind of just motivates me, and which is how I've kind of came out of my shell and started embracing more and posting more on my social media with about, you know, how I'm able to type one diabetes. And I think that's something that I hope can inspire everyone else.

Scott Benner 1:22:57
What was it like having more personal intimate relationships in college with type one?

Speaker 1 1:23:02
I think it was kind of hard to explain, you know, just, for example, like, no one really knows, it understands like what alo is. And I think that was a very hard thing for me to explain, like I, you know, it can happen in any moment. And I'm sweating. I'm just really like, not all there. And I'm trying to explain, like, Hey, this is what's going on. I need your help. And I think that was something that was hard for me to, you know, I did talk to people about it. So when this happened, they were like, oh, you know, what's going on with you? I'm like, I'm actually a type one diabetic. This is what's going on, I need your help. What about

Scott Benner 1:23:40
once you've had an experience like that in front of someone? Was it always bonding? Or did it ever have people kind of step back and be maybe more leery of your relationship? After

Speaker 1 1:23:53
I would tell someone I had type one diabetes after subtype of Evander endemic, they were kind of more upset with me that I didn't tell them up front. Because they were like, you know, I care about you, as a person I would have loved to knowing this about you. It's not anything you should have to hide from me. And that was a lot of the realization that I was going through with a lot of people.

Scott Benner 1:24:09
Okay, let me ask you this. So now we talked about what it was like to be low, and to have that more kind of emergent situation. But what about when your blood sugar has been high or stubborn? And you're not thinking correctly, but it's not as obvious maybe to you or to them? Yeah.

Speaker 1 1:24:24
So I also I go through my same experiences when I have high blood sugars. You know, I can tell like, for my co workers, for example, I didn't really talk to you know, when I go out backtrack, when I visit multiple sites for work, I usually don't announce it. And so sometimes, I'm working throughout the day, I might have snacks, forgot to take some insulin, and my blood sugar is running high and I'm a little bit more irritable, I'm all over the place. And I'm like, let me stop. Hey, guys. I need to like take some insulin and I'm sorry, I'm not I didn't tell you guys. I'm a diabetic. So you may be wondering I'm kind of just a little bit snippy, you know, so I like to make sure I do that now going forward, because that's something I noticed. And it was kind of hindering me in my career because I was, you know, getting irritable, because I'm working nonstop. And I'm forgetting to take a step back and focus on my diabetes,

Scott Benner 1:25:15
right? Hey, with the advent of new technologies, like Medtronic, CGM and other diabetes technology, can you tell me how that's improved your life and those interactions with people? Yeah,

Speaker 1 1:25:26
I can. I feel confident knowing that it's working in the background, as someone and I always at least said it, I have been showing that's really bad with counting my carbs. So sometimes I kind of undershoot it, because I'm scared. But it allows me to just know that, hey, it's going, it's got my back if I forget something, and I think that allows me to have a quick, have a quick lunch. And then I'm able to get back into the work day because it's such a fast paced industry that I work in. So sometimes it is easy to forget. And so I love that I have that system that's keeping track of everything for me.

Scott Benner 1:25:59
Let me ask you one last question. When you have interactions online with other people who have type one diabetes, what social media do you find the most valuable for you personally? Like? What platforms do you see the most people and have the most good interactions on?

Speaker 1 1:26:16
Yeah, I've honestly, I've had tremendous interactions on Instagram. That's where I've kind of seen a lot of other diabetics reach out to me and ask me questions, or comment and be like, Hey, you're experiencing this too. But I've recently also have been seeing tic TOCs. And, you know, finding on that side of it, I didn't, you know, see the videos and upload videos. And I'm like, I would love to do stuff like that. But I just never had the courage. So I'm seeing people make like just the fun engagement videos now, which I love, you know, really bringing that awareness to diabetes.

Scott Benner 1:26:45
Isn't it interesting? Maybe you don't know this, but there's some sort of an age cutoff somewhere where there is an entire world of people with type one diabetes existing on Facebook, that don't go into Tik Tok or Instagram and vice versa. Yeah. And I do think it's pretty broken down by, you know, when that platform was most popular for those people by age, but your younger people, I'm acting like, I'm 100 years old, but younger people seem to enjoy video more.

Speaker 1 1:27:12
Yes, I think it's just because it's something you see. And so it's like, and I think that one thing, and obviously, it's a big stereotype of our diabetes is you don't like you have diabetes. And that's something I always face. And so when I see other people that are just, you know, normal, everyday people, and I'm like, they have type one diabetes, just like me, they're literally living their life having fun. That's just something you'd want to see it because you don't get to see people living their everyday lives with diabetes. And I think that's something I've really enjoyed.

Scott Benner 1:27:41
What are your health goals? When you go to the endocrinologist, and you make a plan for the next few months? What are you hoping to achieve? And where do you struggle? And where do you see your successes,

Speaker 1 1:27:52
I'll be honest, I was not someone who is, you know, involved with my diabetes, I wasn't really focused on my health. And that was something that, you know, you go into an endocrinologist and you get these results back. And it's not what you want to hear. It gets, it makes you nervous, it makes you scare and so I have personally for myself, you know, I was like, This is my chance, this is my chance to change. I know there's people that are living just like me, everyday lives, and they can keep their agencies and their blood sugar's under control. How can I do this? So I go in with, you know, I would like to see it down a certain number of points each time I would love for my doctor to be like, Hey, I see you're entering your carbs, I see your, you know, you're not having lows. You're not running high, too often. That's my goal. And I've been seeing that. And that's what motivates me, every time I go to the endocrinologist where I don't dread going. It's like an exciting visit for me. So you'd

Scott Benner 1:28:40
like to set a goal for yourself. And then for someone to acknowledge it to give you kind of that energy to keep going for the next goal.

Speaker 1 1:28:48
Yeah, I feel as a type one diabetic for me, and it's just a lot to balance. It's a hard our journey. And so I want someone when I go in, I want to be able to know like, Hey, I see what you're doing. Let's work together to do this. Let's you don't want to be put down like you know, you're doing horrible you're doing it's just, it's not going to motivate you because it's you're already fighting a tough battle. So just having that motivation and acknowledging the goods and also how we can improve. That's what really has been the game changer for me in the past two years.

Scott Benner 1:29:25
John, I appreciate you spending this time with me. This was terrific. Thank you very much.

Unknown Speaker 1:29:28
Absolutely. Thank you.

Scott Benner 1:29:30
If you enjoy Jalen story, check out Medtronic diabetes.com/juice box. I appreciate you listening all the way to the end. So this little bit is just for you. Hello, friends. Hello friends. Hold on. I'm getting there.

Alright, let's try this again Hello friends and Hello friends. No hello hello friends Hello friends and welcome to episode 1191 of the Juicebox Podcast.

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#1190 Ask Scott and Jenny: Chapter Twenty-One

Scott and Jenny Smith, CDE answer your diabetes questions.

• Scott to Jenny: If I gave you a magic wand and you could make everybody with diabetes do one thing, what would you make them do?

• Jenny to Scott: What do you get as the main reason that companies don't tend to hit the whole market of desires for everyone with diabetes? Why does it feel like each one is only choosing a third of a pie?

• Jenny to Scott: How many days do you watch for a trend?

• Jenny to Scott: How do you feel about AI specifically in diabetes? Also, do you think that all the tech, info, apps, and everything is creating more mental health stuff in the diabetes realm?

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 1190 of the Juicebox Podcast.

On this episode of Ask Scott and Jenny instead of the listeners asking the questions, which we'll get back to in the next episode, I asked Jenny a question and she asks me a few. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan for becoming bold with insulin. There is an incredibly simple way for you to lend your knowledge to diabetes research without leaving your home. That's right, if you've ever wanted to help type one diabetes research but didn't have the time or couldn't make the commitment. Now you can t one D exchange.org/juicebox. Head over there and take the survey. The survey takes about 10 minutes. They won't ask you one question you don't know the answer to and you should be in and out of there in like 10 minutes, you need to be a US resident who has type one diabetes, or is the caregiver of someone with type one. Go lend your knowledge to the resource that helps them get help, maybe even you and while you're online, go check out the Juicebox Podcast private Facebook group, where you'll meet 50,000 members Juicebox Podcast type one diabetes. This episode of The Juicebox Podcast is sponsored by ag one drink ag one.com/juice box. head there now to learn more about ag one. It's vegan friendly, gluten free, dairy free, non GMO, no sugar added no artificial sweeteners. And when you make your first order with my link, you're gonna get a G one and a welcome kit that includes a shaker scoop and canister. You're also going to get five free travel packs and a year supply of vitamin D with that first order at drink a G one.com/juice box. US med is sponsoring this episode of The Juicebox Podcast and we've been getting our diabetes supplies from us med for years. You can as well us med.com/juice box or call 888-721-1514 Use the link or the number get your free benefits check it get started today with us med this episode of The Juicebox Podcast is sponsored by ever since the ever since CGM is more convenient requiring only one sensor every six months. It offers more flexibility with its easy on Easy Off smart transmitter and allows you to take a break when needed ever since cgm.com/juicebox. All right, Jenny. Welcome back. How are you? I'm good. How are you? Excellent. Thank you. I had an idea this morning. Yay, in the shower, and I texted you. And I knew we were going to recoil in the shower. No, I mean, I want to say respectfully I waited till I was dressed. Because I do think that would be weird. Even if you wouldn't know that I was naked when I texted you.

Jennifer Smith, CDE 3:11
I was thinking about the water on your phone while you're trying to do things.

Scott Benner 3:15
You don't do this, like Arden calls us from school from the shower. She facetimes from the shower, all of her friends. They FaceTime while they're showering all the time. The girls do. Yeah, that's bizarre. They put it up high enough that you can just kind of see their shoulders and their head and they shower and talk to each other. Think it's the only time they have time to talk to each other actually, because they're all in college maybe I don't know. But anyway, that's anyway, I just want you to know I was fully dressed before I tech. And

Jennifer Smith, CDE 3:45
you had an idea. Also, I

Scott Benner 3:47
want to say this. My mom has passed on now but my mom had an incredible way of calling me or texting me as I was getting into the shower for years. And she passed away and I thought well, at least that won't happen anymore. Except for Isabel from the Facebook group. She picked right up where my mom left off. Doesn't matter if it's like, if it's like right away in the morning and I'm like get up out of bed and I jump in the shower. If I get up and I mess with the dogs and two hours later I get it doesn't matter. I find myself reaching for that faucet or I just got in and Isabel's Hey, can you look at a post on the Facebook group? Or did you mean for this to happen in the episode today? I'm like, How do you know I'm in the shower?

Jennifer Smith, CDE 4:26
You look around during my meet one

Scott Benner 4:29
moment I get no hot water hits me and I have a good idea like the one I had today for us. So we've been doing some ask Scott and Jenny stuff lately, which we'll get back to the next time you and I talked but today I want to ask each other a question and just see where the conversation goes. Okay, so I texted Jenny and I said come up with a couple of questions for me. And then I came up with one question for you. Only one well, I feel like there's a conversation and so I don't want to eat up too much time and I wanted you to have like something to pick from That's why it was like your you get more. Oh, and I've tried very hard not to consider your answer or what you might ask me today, because I just want it to be kind of free flowing. So anyway, that's the amount of effort that goes into the podcast do you guys love? Can I ask my question first?

Jennifer Smith, CDE 5:15
Sure. Do

Scott Benner 5:16
you want to go first? Do you have like, Oh,

Jennifer Smith, CDE 5:18
good. I came, you said, let's think of five questions. I thought of six. You

Scott Benner 5:23
have six questions. All right. Well, I'm gonna ask my ego first. Well, okay. So you have to listen to the podcast pretty specifically, I think to know this. But the moment that I began to think about getting better at diabetes, started with me asking Ardens nurse practitioner CDE, maybe Which one did I ask maybe the CD?

Jennifer Smith, CDE 5:46
She could have been Bolus? Or he I mean, it wasn't she

Scott Benner 5:49
and I maybe she has both. I don't know. That's neither here nor there. Okay. Anyway, she's definitely a CTA. And I said, If I gave you a magic wand, what would you make people with diabetes do one thing, you'd only make them do one thing. And she said, without much thought, I'd tell them not to be afraid of insulin. And that went on a whole thing. I wrote a six part blog series for back then it was on the pods blog about not being afraid of insulin, but the truth was, I was afraid of insulin. So it wasn't like a blog from like a learned person who was like, here's some tips about how not to be it was me talking myself out of being afraid. And I think it helped Arden immeasurably. And then I think it spawned a lot of what people hear now on the podcast. So my question to you is, if I gave you a magic wand, and you could make everybody with diabetes, do one thing. What would you make them do? This episode of The Juicebox Podcast is sponsored by ever since and ever since is the implantable CGM that last six months ever since cgm.com/juice. Box. Have you ever been running out the door and knocked your CGM off or had somewhere to be and realize that your adhesive was about to fall off? That won't happen with ever since ever since won't get sweaty and slide off, it won't bang into a door jamb. And it lasts six months, not just a couple of days or a week. The Eversense CGM has a silicone based adhesive forged transmitter, which you change every day. So it's not one of those super sticky things. It's designed to stay on your forever and ever, even though we know they don't work sometimes. But that's not the point. Because it's not that kind of adhesive. You shouldn't see any skin irritations. So if you've had skin irritations with other products, maybe you should try ever since unique, implantable and accurate. So if you're tired of dealing with things falling off, or being too sticky or not sticky enough, or not staying on for the life of the sensor, you probably want to check out ever since ever since cgm.com/juicebox, links in the show notes links at juicebox podcast.com.

Jennifer Smith, CDE 8:11
That's a great question. Oh, and I make them do. I mean, I would have referred to insulin had you not already brought it up. But being a dietitian, and not a nurse. Okay. I would. And I don't want this to sound judgy. But I would really write like, there's no judgement. In fact, I say to people all the time, when I'm like, this is like the no judgement zone. I'm here, you know, to help to cover to whatever we're going to discuss. But I would really love for people to truly understand what the impact of food outside of blood sugar does to their overall health. Okay? Because, you know, with diabetes, we're really focused on blood sugar numbers, right. And food is a big part of that. There's kind of three tiers exercise food and insulin and food being a major piece of that. I think we focus too heavily on not being afraid of the insulin. But because of that we sort of lose the overall in, in what is our body really need just from a longevity a health perspective.

Scott Benner 9:21
Okay, so are you saying that, because we try so hard to tell people at diagnosis, this isn't going to change your life. You can do whatever you want. You just count the carbs and put in the insulin right now, of course, knowing that it's not that simple. And that advice never really helps anybody but the intent of it is there is an amount of insulin that covers your food. Yes, but you're saying it takes out the piece. We start considering the impact of the food outside of the blood sugar. Right, right, because I know how to Bolus for Marshmallow Peeps so I can eat them because I can eat them. I can eat whatever I can Bolus for. And so some people might be hearing that and going, I definitely thought Scott would disagree with that. Because he says, I don't care what you eat, just know how to Bolus for it. So this is interesting because it breaks apart like the the sort of tear structure that people who are passing information on to other people have to consider. Because you have to think about everyone you're talking to, like whatever you say, has to work for everybody. It's hard, or in general, like you don't I mean, Jen is a general, yes, but yes, when you're in the public eye, you can't just start saying something that would really work for a low carb person, but not work for somebody else, because then they'll be out there trying to, I just think I don't I don't imagine that people listening would know, the kind of like, back of the brain pressure I have. I can speak for myself about what I say out loud, you know, and so we make this one comment. You can cover it, you can eat it. What's the I almost said stupid, saying, but I'm sure some of you like it. So I don't want to say stupid saying but sorry. What's the saying about? Uh, I can eat anything except poison and cupcakes with poison on it. Have you ever saw that diabetes meme? You've never seen that? I've ever seen that? Yeah, it's in response to Oh, can you eat that? Okay, okay, you have diabetes? Can you eat that? I can eat anything but poison or cupcakes with poison on them? Like that's the response. Right? And, yes, you absolutely can. But it covers the initial problem. Because you don't want people to run into eating disorders. You don't want them to know. Yeah, exactly.

Jennifer Smith, CDE 11:37
And that's a very, it, there's a really hard line to honestly walk. And I think there's a broader, there's a broader issue there. But when you do have diabetes, because blood sugar, and the stuff that we use to manage blood sugar can have effect on overall health. I mean, everybody knows about the complications. That's one big thing that everybody's told about right. But not only does blood sugar impact your overall health, we have nutrients that are a basic necessity of life that we're supposed to be putting in to fuel our body to fuel the energy that gets produced in all of ourselves. I mean, I heard something the other day, which just It struck with me, it was some it was a podcast, someone who was talking about, like the most complex computers, right, and was comparing them to ourselves. Our cells are unbelievably complex, like self driving computers, and the way that they work to keep our body like energized to keep blood flowing, to keep organs working without conscious effort. It's amazing. But what we also put into our body due to our body, the activity that we do with our body, it all plays into that health. So if we're only focusing on managing blood sugar, and covering whatever food we desire, eating with insulin, sure, you may have lovely looking blood sugar numbers. But if you're only eating as your example, peeps all day,

Scott Benner 13:13
there's no nutrition. And so I think it's this kind of like cascading tear, like, you have to take the humanity out of it for a minute. And just think of yourself as a person sitting across from a doctor, their number one goal is for your blood sugar to be stable and low, whether they can accomplish that or not. That's the thing they're thinking of, they want that. And then they don't want you to have diabetes, complications, these are the things they're thinking about. So they're saying learn how to use the insulin. There's no doctor in the world that thinks that, oh, I'm going to talk you into eating healthfully. If you haven't been already, you know, on the day, you were diagnosed with diabetes, right? Like, so that runs into the where I come from, when I say, Look, I don't care what you eat, I want you to know how to use your insulin. I don't mean I don't care what you eat. There are plenty of things I don't think you should eat. But but it's not my job to explain it to you. And it's to me, it's my job to talk to you about how insulin works. So this is like this supercomputer is sitting up there. And it's crunching numbers and doing all this stuff. And then I'm like, You know what, I should try to make this harder. I'll throw a shovel full of dirt on the monitor and pison to the keyboard and see if this thing could still do it. It's still going hold on a second. started throwing the mouse across the room, like can you do it now? And that's where the body is, is really astonishing. Yes, yeah. You can pee into your keyboard for years and it'll keep chugging along and then one day, it craps out. And then what do we do? We always go I don't understand what happened. You know, right.

Jennifer Smith, CDE 14:47
I mean, the body is meant to be again, a self healing machine it it does the best that it can. It's the reason that wounds heal. It's the reason that we can get better from you know, the common cold and all those kinds of things, but If the basis of what it's working off in order to run smoothly that with pianist computer

Scott Benner 15:09
just popped into my head, but yeah, good.

Jennifer Smith, CDE 15:12
Right. So what we put in makes a big difference in the running of that. And we talk about ages, you know, age levels of diabetes are very, very, very young to very old. And so what you start out with in terms of putting in, for somebody who is diagnosed young, can make a really big difference in their long term health. Right? If

Scott Benner 15:35
you think about your cells in your body, or you as a whole person, like, imagine if you were just walking in a straight line forever. And every day, I hung another one pound weight off your back. And you'd be like, Oh, I can do this. I can do this. And then there'd be a day where I just hang one more, and you could not move forward anymore. Sure. I think that's a way to think about poor poor eating choices. Like really, like, you know, I can get away with it today. But then we run into that psychological thing, which I talk about, pretty frequently through the podcast, I think, but people are so hopeful, which is lovely and necessary, I think hope is what keeps you from losing your mind, right? Yeah. And, but that hope, misguided, makes you feel like I could smoke a cigarette today and be okay, like, that's not gonna hurt me, right? I only did coke at a party on Saturday nights in college. Like, like, no kidding. Like, like, I'll be alright, like that. It's gonna be okay. It's just a soda. It's just this it's only a grilled cheese sandwich with bacon. I skipped the french fries. Like like, you know, like, yeah. And so yeah, that coke instead. Yeah. Have you ever, like had a stick of butter out and use it for cooking, and then look back and thought there's a half a stick of butter gone. That's in me now. You know, like, even like deep frying things. You don't mean like you deep fried. I make potato chips here. Sometimes, you start with a gallon of oil and dumped some into the pan. And when you're done, you eat the potato chips. But there's a quarter gallon of oil gone. You don't think about where that's at, you know? Right? Anyway, if you could magic wand everybody listening. So I'm assuming if you could really magic wand them, you'd make them not remember it. And then they would eat kale salads and like all things that were really good for them, and they would just be happy with it. They feel like they were having Twinkies while they were eating whatever god awful things you eat. And then

Jennifer Smith, CDE 17:30
I'm gonna say, Gosh, you imagine that I eat kale salads, like all day long.

Scott Benner 17:35
I think you've washed your keen wild down with fresh something. I don't know exactly what

Jennifer Smith, CDE 17:41
I do like kale. I do. And actually, my boys really like that, honestly, in place of potato chips. I make kale chips. They're very tasty. And they're good for you. So

Scott Benner 17:51
it is a lot about training your tastebuds though to true. Yeah, yeah. So you started your boys early enough that they don't know from anything else.

Jennifer Smith, CDE 18:00
Now that they're older, they're aware of they've been to parties, they've been to kids houses and you know, that kind of stuff, they can definitely identify the differences in what we have and what we allow in our house. Yeah, versus what is available. And what I like to see, the majority of the time if we do eat out like we have a favorite restaurant here, that's, it's like a salad kind of place where you can put your own salad type of dishes together with the proteins and the vegetables and the toppings and that kind of stuff. And I like to let them choose. Because I really like to see, what are they going to put together? Yeah, now of the choices on the bar. There's nothing really that's, quote unquote, bad, right? But I love to see that they choose a little bit different each time. Sometimes they want to choose something that they've not tried before. Like the last time we were there. My little guy chose artichokes, because he was like, Mom, what are those? I'll pick those are artichokes. He's like, delicate, interesting, but those aren't there to

Scott Benner 19:04
get home peeled and are just trying to figure out what to do with it. I would.

Jennifer Smith, CDE 19:06
It starts early. I mean, and if I was on a grand scale, if I could wave the magic wand, not just in the realm of diabetes, but it would be for a much bigger scale change to education. I've always said if I were gonna go back to do something within my degree, but do something different. I would absolutely go back to do something about childhood education about health and nutrition is I think it it's sad that it starts it doesn't start at the right place. And that if they're not getting something at home, they're clearly not going to get it in school because that's not a focus at school.

Scott Benner 19:46
I believe that for many people thinking about food begins when they are in their mid to late 20s and their stomach starts to hurt or they have a kid and they think oh I don't want this kid to eat the way I eat. Like seriously because we don't do a good job of You know, of teaching. And we've talked about this before, but there are plenty of things that people actually genuinely believe are good for them that are garbage. And they don't know it. Absolutely. They have no idea like so. And I've been guilty of that before. I've eaten things and thought like, this is good for me. And I remember I told the story one time if I was eating the veggie sticks, yes. My wife's like, what are you doing? I'm like, There's vegetables. And she was a no, there's not just like MB there, potato chips acuity. And I was like, Oh, I wonder why there was so good. As far as talking about changing your palate, like, my palate has changed slowly. Over the years, I've cut things out. We've talked about it cut out oils, at one point. I'm very, very steadfast about that. But even in this last year, on the GLP, medication, there's just some things now because you feel like it just feels different. Like I was at a party once there was a chip bola and I grabbed two potato chips, and I was eating them. And first of all, they were crappy potato chips. Like, I know you're having a party and you're trying to save a couple bucks. But you invited me to your house like could you give me mean but never neither here nor there? I found a Trash Can I spit them in a napkin? I was like, I don't want to eat these. Right? Yeah. And that's different world for me to some degree. Okay. So you would help people understand nutrition better? I would, okay. But let's say, I'll go back to your initial thing. You're not judging anyone? Like I am. No, yeah, it doesn't matter. I'm gonna go back to the beginning of it. I don't care how you eat. Your body's not gonna have time to urge to reject life because of your poor nutrition if your blood sugars are all over the place. And that's what's when we're talking about diabetes. That's the first step. Correct. If you need to eat a Twinkie, and you can't stop yourself, let's at least learn how to Bolus for it. We'll talk about not eating the Twinkie later, or under percent agree? Yeah. Cool. All right. Well, what's the question for me? I used to hate ordering my daughter's diabetes supplies. I never had a good experience. And it was frustrating. But it hasn't been that way for a while, actually for about three years now. Because that's how long we've been using us med. Us med.com/juice box or call 888721151 for us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omnipod dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor index com customer satisfaction surveys. They have served over 1 million people with diabetes since 1996. And they always provide 90 days worth of supplies and fast and free shipping. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and Dexcom G seven. They accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice box or just call them at 888-721-1514 get started right now. And you'll be getting your supplies the same way we do. It's important to me that the supplements I take are of the highest quality and that's why for a number of years now I've been drinking ag one. Unlike many supplement brands ag one is researched and developed by an in house team of scientists doctors and nutritionists with decades of experience in their respective fields. For ag one quality isn't just a buzzword. It's a commitment backed by expert led scientific research high quality ingredients industrial leading manufacturing and rigorous testing. At each step of the process. Ag one goes above and beyond industry standards. And that's why I know I can trust what's in every scoop of ag one ag one supports the Juicebox Podcast with their ads and they also support my immune health. So if you want to replace your multivitamin and more start with ag one try ag one and get your free one year supply of vitamin d3 k two and five free ag one travel packs with your first subscription at drink ag one.com/juice box. That's drink ag one.com/juice box. Links to AG one US med ever since and all the sponsors can be found at juicebox podcast.com. Or in the show notes of your podcast app. Using my links help support the podcast production and keeps it free and plentiful. Oh, I'm excited. Do you text people naked in the shower? No, I don't already answer that one. What's the next one?

Jennifer Smith, CDE 24:43
I do not do I turn my phone off. Do you really? I don't take it in that like that's, I just keep it outside because you know I use I mean using loop obviously if be close enough in terms of like keeping things running but I have a watch. I can see where my blood sugar is. I don't need it. Air I don't need visual or noise. My husband is the one who he listens to podcasts. He's always got music going in the shower and like, I like the noise of the people are gonna be like, this is weird, but that's like the noise of the shower. Jennifer,

Scott Benner 25:15
you said you ate kill. You're not going to get weirder for most people than that. So I want you to videos in the shower. I listen to podcast this morning. Oh, yeah, no. Oh my god, you're ready. Hold on. I was a little worried that I left something in an episode that I wasn't supposed to leave in. So I listened to myself in the shower this morning, which is, I don't know if you know the word douchey. But it really is.

Jennifer Smith, CDE 25:39
Well, you were trying to work at the same time to work. Yeah. Yeah, I will say that if I could do something in the shower, which there's no way to do this. Like I love reading, you would read in the shower, I would entirely read in the shower. In fact, I would be the person who would finally realize that this shower is probably too cold. Or you get what I'm reading is lost in reading. That's like

Scott Benner 26:03
waiting in a hot tub. Would you like that? If

Jennifer Smith, CDE 26:07
I had a hot tub, that would be lovely.

Scott Benner 26:09
Let's get Jenny Awesome. That's all the year Wisconsin Cognos, by the way, did it snow like Snowmageddon there this week?

Jennifer Smith, CDE 26:15
It did actually the funny thing, so it snowed on. Was it Tuesday, and then Wednesday, and then it stopped. It was raining like downpour Tuesday morning until about noon. And then I looked outside and it was snowing. And I was like, well, that's

Scott Benner 26:34
my brother's job got closed down. It's snowed so much. And in Wisconsin, that's saying something. So

Jennifer Smith, CDE 26:40
it is especially I mean, you know, we can have snow until the end of April here, quite honestly. But this was definite snow and it was heavy and thick and really wet. But today, like a good probably at least 75% of it's gone. It's sunny. It's like almost 50 degrees outside. And it's

Scott Benner 26:58
beautiful. You know, we had here this morning. Rain earthquake. Seriously 4.8 on the record, feeling I was in here going? Okay. Like everything was shaking. It went on for at least a minute, like so it started, it will get to your question for me a second. Oh, yeah, it was your first question is, have you ever been in an earthquake hazard? Because if so, then we're recovering everything here. At first, I'm like, is the washing machine unbalanced? And then I thought, I don't have anything in the washing machine. And then I was like, Oh, this is an earthquake, because I've lived through one other one in New Jersey like 10 years ago. Like everything, exactly what you think of like, and everything's rattling around. And then at the end is it dies off? Your feet are still vibrating on the floor for like the last 30 seconds. You can feel it under your feet. It's really interesting.

Jennifer Smith, CDE 27:48
I've never been in an earthquake. Well, I've

Scott Benner 27:49
been into, but there are East Coast earthquakes. I don't know if they count or not. All right, I'm sorry. What's your question for me?

Jennifer Smith, CDE 27:55
I'm trying to decide between, they'll get to here that I think would be a good one. Let's see. So, okay. You've, you've talked to a lot of heads of diabetes tech kind of companies. I've heard them, you've told me about them. Right? We've all heard you talk to them. And what do you get as the main reason that the companies don't tend to hit the whole market of desire for everyone? Yeah, with diabetes, right? We see products that aim for safety. But when we look at what the systems that aren't approved, provide safety is already in there. Right? Do It Yourself covers this and it allows for more flexibility and more self adjustment cetera. So why are we still focusing on safe numbers? Who somebody deems safe? When many people I know it's a small percentage of what the big market is really? Why can't they just make products that cover everybody and your desire to sort of streamline it the way that you want? There you go, I

Scott Benner 29:14
have to ask you first did you ask this because you saw people talking about what pumped by in the Facebook group? That's not why you thought of that. Oh, cuz I've been thinking about it. It's so interesting us because I've been thinking about this to some degree for the last two days, there's been two big, like, really like, lots of 130 Comment, like, you know, post, okay, it's a great group, you really should join it. If you're not at where people are like, Hey, I'm about to get a pump give me the pros and cons of all of them. And as I'm reading through them, I had the same thought you did each one of these devices. It's like it chose a third of a pie. Right? How do I mean that? I mean, like, it feels like, I'm just gonna come out and say it, it feels like on the pod tandem, Medtronic and I Guess Island, it's almost like they looked at a pie. The pie was split into quarters, and each quarter was a goal, right. And each one of them picked a goal and then ignored the other three goals is kind of how it feels. Does that make sense? Yeah,

Jennifer Smith, CDE 30:13
that's absolutely what I'm getting at. And then the broader scope, the, you know, the my PI piece, and all the people that I would definitely put in the same, you know, you Arden goals and everything, kind of in the same pie piece of desire and target and independence and wanting to work with your system and have it work to your goals. I don't understand why with the safety that we know how to achieve. We can't get systems that allow people to do all of that in parameters that are personalized, right? Right now, the lowest target blood sugar that's on the market in a system is Medtronic and what's their target? Their target is you can go as low as 100. Is that the seven? ATG? That's the 780 G. Okay. 5.5, if your millimoles

Scott Benner 31:06
what is on the pod five 110 110,

Jennifer Smith, CDE 31:10
which is similar to control IQ tandem, which is 112

Scott Benner 31:14
and a half or 113 and a half, right? Some crazy like that. I love that. Although

Jennifer Smith, CDE 31:18
if you're setting up the pump, it actually is 110. Okay, you don't set it up as one 12.5, which is just it's part of like, somebody explained it to me the other day, and I can't remember exactly what she told me. But yeah, it's not what gets set in the pump as the target, right. But it is essentially 112.

Scott Benner 31:36
And the islet is shooting for an A onesie in the seven, it's

Jennifer Smith, CDE 31:39
shooting for that. And you do have the ability to navigate, low, moderate and high target as one pivotal kind of point. The only other point that you can put into eyelet is your weight. That's it. Those are those are your pivot points.

Scott Benner 31:53
Oh, Jenny, are you saying I could lie about my weight and make it more aggressive? I feel like that's what I just heard you say? You didn't say that. You would never say that. Nothing you hear on that Juicebox Podcast should because I actually don't know that that that works or not. That's just popped in my I want to be very clear, I'm not joking around. I have no idea if that would work. But as I'm sitting here, it makes little so you

Jennifer Smith, CDE 32:13
are thinking about it in the right way. Because it's basing its basing it off of your starting weight that you enter. So

Scott Benner 32:20
I wonder if you had insulin resistance like PCOS, if you could make it. Alright, that's for another podcast. So I drew my pie right in front of me. And I wrote more aggressive and I gave that to tandem. No tubes. I gave that domine pod. low effort. I gave that to pilot eyelet. And I don't know what to call med tronics version because I haven't seen it enough. You

Jennifer Smith, CDE 32:45
know, I would say of I don't know what to call it either. Because I would say it's

Scott Benner 32:51
is it pretty equivalent to the control IQ or where do you would you choose the tandems algorithm over it?

Jennifer Smith, CDE 32:57
For the correct ability feature? I would actually choose Medtronic interestingly, okay, Medtronic correctives are more frequent, its corrective boluses. It also does do Temp Basal increases, similar to control IQ. But based on blood sugar, it also is willing to give corrective pulses, like the standard control IQ algorithm setting. Yeah, but it does it more frequently, which means that you can get around high is much better for some people much better with Medtronic 780 than you can because tandems just slower in its Dilip decision to give you a pulse out,

Scott Benner 33:35
you're gonna see an ad on social media that says Jenny Smith says I would use Medtronic before tandem.

Jennifer Smith, CDE 33:43
Actually, that's it for some reasons. Yes, for some reasons I would actually choose tandem tandem is the only one that's approved that you can actually, if you know your basil is are well said if you're that type of person who has really awesome, you know, settings, and you want the system to just work off of them. Control IQ is a beautiful algorithm because it it takes your settings and adjust up or down off of them. Yeah.

Scott Benner 34:07
So your question back to me. Sounds more. Here's how I was why.

Jennifer Smith, CDE 34:13
What do you think is the reason I'm gonna

Scott Benner 34:15
give you my why in a second. And I could be guessing but what I really feel like you're asking me is how come Omnipod fives algorithm isn't more aggressive, like control IQs? Because that fixes a lot of like your concerns, right? Yeah,

Jennifer Smith, CDE 34:29
it does. Yes. One really big negative to me in terms of Omnipod five, which I think has a host of really wonderful pros. But one of the big cons is that Omnipod five only suspends it doesn't take away slowly, as it sees something happening. That's a drift down under a target that it desires. Okay? Instead it stops and that creates a lot of issues for people with rebound actually with rebounds, especially when you're coming into a meal.

Scott Benner 35:00
Yeah, yeah. Cuz it could tell away coming into a meal because it doesn't know you're going to eat two hours from now if it's trying to stop a low. But if it's trying to drift, you know, I get your point. So, listen, I'm no business executive, that's for sure. If you guys could sit in on any of the business meetings I have with the advertisers, you would do the same thing that I'm sure they do in the meetings and and the cameras go off, I'm sure you would say to yourself, I can't believe he is doing business with those people. I talk just like this in business meetings, people stare back at me like what's happening? So here's the here's the funny thing that we're not talking about. Is that that pie, except for low effort, three quarters of that pie belongs to any of the do it yourself algorithms that exist on the internet?

Jennifer Smith, CDE 35:49
That's my point. Yeah, I don't understand with everything that we have in the do it yourself world, all of the research and the proof in the pudding that they've put together. I don't I don't get why, at the top level, these big companies are not just saying, You know what, this is lovely. It's all put, why don't we just deal with them and put this into?

Scott Benner 36:13
I will tell you something that I said, because the person I think I set it to doesn't exist at the company anymore. But this is gonna have to go back. I mean, four or five years ago, right? So I think everyone knows that Omnipod was a little behind the pace getting to an algorithm, right? Yes. And I think the reason for that is probably an upper management, they were a little unclear about the direction they were going until they brought these people in and got very solidified and decided, like, you know, on the path that they're on now, that's my perspective, having worked with them, you know, a little bit over the years. So they got the management in there that was like, Hey, listen, let's make insulin pumps, and let's go. And then they were behind by them, because tandem was already moving. Medtronic had already been through their first generation, we also don't give Medtronic enough credit for going first in the repeal algorithm market, because you knew they're going to take it the ask because it wasn't going to be perfect. And it was the first time and people certainly gave him a lot of crap over it. But

Jennifer Smith, CDE 37:09
the data that they got in order to move forward and build, yeah, give data to other companies to actually say, what can we improve? On this, right?

Scott Benner 37:17
The Trailblazer doesn't usually get the credit. And I definitely think in retail algorithms, Medtronic took one part for that. But I was sitting with somebody one day on a call. And like I said, These people don't exist it on a pod anymore. So I'm not worried about saying this. And they're like, Hey, we're gonna we're building an algorithm, like we're gonna they were talking about how they were going to go about it and everything and and I said, whatever you're doing, stop. I'm like, stop, put two people who speak Russian on an airplane, find a guy named Ivan, give him a bag full of money, get him a visa, bring him to Boston and let him build your algorithm for you. Please, like, please go get the guy that wrote this code that this loop thing my daughter is using just go get this right now. And, boy, I said it every time I could to anybody who would listen to me now listen, are they going to do that? No. Is that even reasonable? No. But it also like, you can't tell me that all these companies haven't picked through that code. You know what I mean? Like, just correct. Yeah. Make it like that.

Jennifer Smith, CDE 38:28
And you know, the other thing I know, all these companies have people who have diabetes on their teams, right? I know that they do. Are the people without with diabetes, not the ones who are like, are they not able to give feedback? Are they not able to say, Hey, do you see this big group of people? Knowing love? Like, shouldn't we be thinking along these lines? No. I mean, if they ask me crap, they don't even pay me. I'm just going to tell them, I'll give you my opinion. Yeah, it

Scott Benner 38:58
was really offering my opinion, I was like, just do this. And because loop is an example. You can choose a version of loop that makes Basal adjustments to try to stop highs. Or you can flip the switch the other way and decided to let it make larger bonuses like Right, I've always said to people, like set up algorithms the way Adobe Photoshop is set up. There's beginner, intermediate, and advanced. And when you click on one of those tabs, you get more features. Just make your algorithm like that start everybody at beginner tell them you got to be in for six months. And then you know, if you have a certain percentage of under whatever lows I don't care how you do it like to legally Cover yourself. Let them move up to our intermediate, make them take a test let them move up to intermediate. Can you think it would be so sick? I mean, I really believe it would be very simple to do. And so the question is, why don't they? I think that comes down to time. Limitations of humans and money. So, but what limitation is going to be completely out of the limited in my opinion, what

Jennifer Smith, CDE 40:02
are the limitations quite honestly, come on limitations. So keep this

Scott Benner 40:06
here but see your job, see your job is different, right? Your job is everyday you sit down, you look at a person. And if you do a good job helping them do better with their health, you one your employers happy, right? And the people who are paying your happy Chinese, I don't know if my employers are happy, but you understand, like, we all have jobs, okay. But these people are saying, we're going to make an algorithm, for example, it's going to take so many years, and then it's going to have to go off to the FDA, and it's going to take so many years, and then we're actually gonna have to make it and it's going to take so many years, we're looking at five years before we start getting our money back. They gotta spend money for five years, they gotta run that whole organization with no return on on their and what if it fails, like so let's do something we know for sure is going to work. And we'll lean into who we are. And on the pod listen on the pod is tubeless. My daughter's only ever one an omni pod, right? loop works on Omni pod. So

Jennifer Smith, CDE 41:08
in this day and age, I'm not saying years ago, I'm saying at an age, we already have the we already have the information. Nobody needs to sit in a little back room not getting paid for anything and make it up. They're not making anything up. It's already out there. It's it's free. It's freely out there. Jenny,

Scott Benner 41:28
I've heard that this island guy because of the war in Ukraine can't even use he can't even like be involved in making a loop anymore. Like I mean, I think we could have got him out of there for $25,000. And like a can of Coke. You know what I mean? Like here, so I don't know, maybe he probably lives in Dallas. He's probably listening right now. I'm like, s hole. I live in a very metropolitan area. But seriously, like, there's been other people since him. Oh, yes. Like there's

Jennifer Smith, CDE 41:53
there are many, many people in the whole

Scott Benner 41:56
basically people with type one diabetes who know how to code who sit down and say, I want to figure out how to do this and in their person. Like Arden is not even using loop anymore. She using Iaps. Fantastic. Like, just fantastic. And like, I don't know, like and then you saw tide pool. They tried to do it. And I mean, God bless them. But that ain't going nowhere. You really mean like like that at

Jennifer Smith, CDE 42:20
this point. I

Scott Benner 42:21
mean, Holy Hannah, we're gonna be I'm gonna be dead by the time it like, you know, like they told us that driveable pump. Yeah, and listen, and maybe that's even the pump companies saying, maybe we don't want to be involved in that. I don't know, I don't know the business of that. But that Business Plan to Eat taken too goddamn long is what it is, by the time they the time they get that mainstream enough that algorithm is going to be I'm not gonna want it anymore, you know? So yeah. But ya know, your points not lost on me, Jenny. I mean, somewhere between money time, limits of people. And by what I meant by limitations of people is that everybody in their job, they got to succeed every year to get a bonus to get to keep their job to move up. And they can't sit around for five years going. It's common, it's common, because they're looking out for themselves, too. So, yeah, I don't I mean, I don't know, I've interviewed a lot of people. And I generally think they're telling the truth when I'm talking to them, like I really do. But I also think you're only talking about the things that they're willing to talk about, or

Jennifer Smith, CDE 43:21
the things that they know about from a department angle, right? Not everybody is able to share all the aspects of all the things that are going on with a particular product, you have your job, somebody else has another piece of that job. And you may not be allowed to talk about certain features or things.

Scott Benner 43:39
So point, by the way, that code is open source. Like, I'm going to tell you right now, if you made me the king of any one of these companies, I'd go in, I'd sit down and go, Hey, everyone, stop what you're doing. Go get that algorithm, get it into our goddamn pump, because we're going to take this market over we are going to like it would in six months online, people would know, yours was the one. And you know, they all know it. They know because they all talk about like, well, we're this but they're that, like, you know, they do it in their marketing back and forth. But the truth is, is that it's none of them are talking about the real truth, which is that loop is just way better than all of them. Yeah, that's all, you know, but people ask me, What's the best algorithm? I tell them? It's the one my daughter's using right now. And if she's using a different one, six months from now, I guarantee you that'll be the best one because I ain't sitting around. You know,

Jennifer Smith, CDE 44:32
I haven't built on my phone. I just don't I haven't played around ups. Just put. Okay, I haven't played around with

Scott Benner 44:42
lots of things. But it's also scary. Like I'm counting on like a guy named Ivan not to be impacted by a war in Ukraine. Like you don't you mean like is the Ukraine? No, it's Ukraine. Right? And like so. Like, that's crazy. I know. That's crazy. Like I know, that's insane. But I don't know how to tell you that. Like the other night, I watched Arden come back from class and by watched I mean I could see on her Nightscout she got back from class. And I think she just was really hungry and she walked in her dorm room and she ate I think she pushed the button and she ate right. And her blood sugar climbed to like 185. And I watched that algorithm just Bolus and Bolus and Bolus and crushed it and bring it back down and she didn't get low and it was over. And that was it and or we put her on a GLP medication. Jenny knows this Ardens I'm gonna go through the whole thing. But Arden's insulin sensitivity went from one unit moves her 43 points to one unit moves her 90 points. Because of this GLP she's on. I don't have to wait for it to relearn. I gotta call my doctor, I just went to a manual. I was like insulin sensitivity when they just kept I told her I'm like, Just keep moving it until it works. And that's it. That's all we did. That's how technical I like I said, Hey, try one to 53. And then a day later, I said make it 65. And we moved up the GLP medication a little bit. I was like, make it at, like, you know what I mean? So what's

Jennifer Smith, CDE 46:10
funny about this is that that was actually a question on my thing for you was I was gonna ask, how many days do you watch for a trend?

Scott Benner 46:19
Day? So I watch for a trend, I do it till it works. Like I don't know how to like. So there's a weird when going back to what we talked about in the beginning? How would I talk about that in front of other people? So you know, what you and I usually do when we talk is I let you give the very technical answer. And then I just tell people what I do. And then they can figure out where in between that works for them. Sure. Yeah. So Arden injected a GLP medication. She started with point two, five units of ozempic. And her at that point, her insulin sensitivity is one to 43. Two days later, we were seeing low blood sugars already, which is uncommon, like you know, there wasn't it's not even a therapeutic dose of that medication. But here it was right. She felt a little full. She wasn't eating as much. I thought oh, it might just be food. I watched it. She had a low, the algorithm couldn't pull her out of the low. And so I changed her insulin sensitivity. Right. Then the next day, I changed her basil. And I think I had the whole thing set up three days after she three and a half, four days after she injected the ozempic. The first time I watched that work, I made little tiny adjustments like the turned insulin sensitivity, like two more points or made the Basal like point five less than I watched her meals, I made her insulin to carb ratio weaker. And till I didn't see Lowe's before she started eating. And then I left it there and watched it. So I mean, I had the whole thing adjusted out in like five or six days. Right? But how long would I wait? I knew what was happening. There was a variable and play here I had, I had set settings up for Arden and her physiology. And then we changed fundamentally how her physiology worked with this variable and I changed it immediately.

Jennifer Smith, CDE 48:09
Right and you had a variable that you were paying attention to. It's not

Scott Benner 48:13
like out of nowhere, she started exercising I didn't know or something like that. But that's where we started talking about real world stuff. Where if I just noticed on like, on Thursday, she was low. And I was like, I don't know what happened. I'd wait. I wouldn't do anything. If it didn't happen on Friday, I'd go ha if I came back around next Thursday, and it happened again. Then I started being like, Hey, what did you do at school on Thursdays?

Jennifer Smith, CDE 48:35
Right? Yeah,

Scott Benner 48:36
that'd be my first question. What do you do at school on Thursdays? And have you been doing something different running around more blah, blah, blah? Are you eating lunch? Like like is that the day is like something? And then if I couldn't see a variable, there'd have to be one. If you were only low on Thursdays, there'd have to be one. You know what I mean? Yeah.

Jennifer Smith, CDE 48:54
And that's where looking historically at information, which I know that you do, you know, at her information, but I think that's where it becomes really important and trending, to look at some data from the past to spot some of that. Because if you are really trying to make a baseline change, because you sense that something needs to change, then, you know, a couple of days of a trend around a particular time of day, can sometimes give you a foot in the door about okay, I can change it this way. Kind of like you said, I change it the next day. It's not enough, but there was a trend to start with. So I know that incrementally now over the next couple of days, I can make little daily changes. But you have to first start with a trend right I

Scott Benner 49:40
also set up some profiles for Arden when we were with her two weeks ago. She was starting to get low overnight, and it was always happening at like 330 in the morning, which means that she's eating around 10 And that last Bolus is messing her up somehow. And I didn't want to change all of her settings because it was only happening at some points in her menstrual cycle, not the whole thing. So I built a 90% profile and an 80% profile. So she can be like in the bottom of the Iaps app, it just says normal. I think you can touch that and then choose other ones that your program. So I said, Listen, I said, see where you touch this. And then this comes up. She goes, Yeah, I'm like, if I text you 90, touch that touch 90. And she goes, Okay, so I started like, a week and a half ago, I texted her at night, I was like, I just sent her 90. And that was it. And then in the morning, I sent her normal. And so I was kind of practicing overnight, and it stopped the lows. And then I waited to see if she'd remember to do it. And she didn't. So then I was like, Hey, I think we want to do 90 overnight, as long as you're on this injection. And then we'll see what happens after that. But yeah, I mean, how long would I wait? I mean, there's no way, you know what they always say, they always say, wait three days. And then people's responses. If I wait three days, it'll change again, by the time it happens, or it'll go away. Or I think that's what happens. I think people think it's going to go away.

Jennifer Smith, CDE 51:10
And I think that's where spotting. That's why I asked like how many days I mean, in many doctors offices usually actually say let's wait a week, right? That is too long. Right? It doesn't mean though, that you you just let things happen while you're watching for a trend to appear over a couple of days, right? So a bedtime, you're always having a rise in your blood sugar, okay, correct the rise. But if it's only tonight, and doesn't happen for the next six nights, that's not a trend. So you don't have a profile change to make. You need to accommodate around whatever variable created that high to begin with. Versus okay, I'm high, I corrected it. Tomorrow night, I go high again, I correct it. By then it's more like

Scott Benner 51:57
anything, Yeah, something's happening. You're I'm always very careful of not making band aids all over the place. Because you can make so many different little blind adjustments and everything gets so messed up, the only thing you can do is start over. Because you can't even tell what the end that's what doctors are notorious for, is like where you're getting lowered to aim, but will turn your Basal down to aim, you know, a sooner than that. And be like, Look, I guess the way I would want everybody to think about it is the way I talk about all the time, which is insulin for now. Insulin taken now is for later. But more importantly, what's happening now is because something because of something you did previously, right? Yeah. So it's the same idea. But it's a different way of thinking about it. Like when something's happening at one o'clock, please go back backwards hours and look to see what got you there. Do you have time to ask me the other one? Are we done? Are you are you? No, no,

Jennifer Smith, CDE 52:53
I've got about 10 minutes. Let's see. I actually came up with a whole bunch. Which ones do I want to ask though? Well, this one, how do you feel about AI in diabetes specifically? And do you ever think that it will completely 100% hit the mark of people with diabetes? Not really having to think about more than like, putting their pump on? Okay. I mean, I have some thoughts about that. But I was curious what you think, oh, I

Scott Benner 53:25
want to hear what you think, too. So you have two different questions, kind

Jennifer Smith, CDE 53:27
of I mean, it's all within the same framework, though of AI. Right, it'd be the first part. How do you feel about AI specifically in diabetes?

Scott Benner 53:37
I have a company right now indexing the entire podcast for me. Okay, so my goal is that you'll be able to go to a website and ask a website, ask the website a question. And it will only answer based on everything that we've all of us have ever said to each other on the podcast, all 1200 episodes, and it will continue to index into the future.

Jennifer Smith, CDE 54:01
So the be the next question leads into that concept. So that idea, I think that's actually easy for AI to do. Yes. At a deeper human level, though, I think more in terms of like educational, right, not even necessarily the techie part, but like, educationally, when you have someone that you're working with who has like, one concept to manage what happens when now AI is doing the instructional and they have multiple medical things, some of which could actually have completely opposite parameters of management. Yeah.

Scott Benner 54:42
So other things could be impacting that there's no way the AI would even know about

Jennifer Smith, CDE 54:47
right and that takes a human. Do you think that AI I guess we'll ever get to the point of thinking more human like because this takes it takes analysis on a different level than computer Hey, out

Scott Benner 55:00
without input, though, because like, you have to teach the AI, the podcast so that it can answer questions that have been answered in the podcast already. Okay, if you want an app to tell you, Hey, you got low here, like we see your low. I think you should have eaten 15 grams of carbs at this time or four to say, hey, we see a low coming. Go ahead and eat this. I think that's going to exist pretty quickly. Sure. But if you like I actually think that you're well, I don't just think I've been I actually was just it's so funny you how are you reading my emails? Jennifer, what's going on? I've been approached recently by a company, I'm still assessing it. And they want to be partners, like they want to get involved a little bit. And they have an app that is going to look at your pump and CGM data and say things to like, Hey, you should probably have 10 grams of carbs right now to avoid a low. And they've asked me if I want to learn more about it.

Jennifer Smith, CDE 55:59
I wonder if it's tough to tell me later? If you can, I'll tell you right. Now that to me?

Scott Benner 56:06
No, not that one. No. Okay. That's the one that I know about that had to be so frustrating for people listening.

I'm still assessing how I'm going to answer this this inquiry? Sure. I think it can get to it. But the problem is, it's the same problem as Why don't the pumps all do what they should be all doing? Because you need somebody to put that effort into it. And that's where it never happens. Like because yes, I listen, there was a guy on here one time talking about, you know, if you had location services on your phone, and you went and got pizza at Pizza Hut, and you said, Hey, I had three slices of pizza. And this was the Bolus. And here's what happened to my blood sugar afterwards, I needed more insulin and blah, blah, blah, then the next time you went back to that Pizza Hut, the location services would say, I'm at that Pizza Hut, where last time this happened. So this is how much insulin you should use for a slice of pizza. That's very doable. But somebody would have to do it.

Jennifer Smith, CDE 57:11
You don't I mean, somebody has to collect all the data to essentially teach it, how to navigate that you

Scott Benner 57:17
first have to teach it for yourself. But I'm saying someone actually has to go to the trouble of putting it together. And what I usually find is that the end users don't want complicated when it comes to diabetes. So if there's a big setup where I have to always wear a watch, that tells me where I'm going, or I have to remember to tell it, hey, this is Pizza Hut, and that's my local, like pizza place. They're different, like that kind of stuff. No one's gonna do that stuff.

Jennifer Smith, CDE 57:41
I would I would,

Scott Benner 57:43
I'll say something like I've done, I'll tell you something that I've very privately told any person who's ever come at me with a diabetes that and then like, can you tell me what you think of this app? I'll tell them all the time, the same thing? I don't think this is what people want. I don't think people want more involvement. Yeah, I think even if your app does what you say it does, you're not going to be able to get it widely adopted. That's good.

Jennifer Smith, CDE 58:07
I think that you looked at all of my questions somehow. Because that's actually, one of my last questions was, with all the tech and the info and the apps and everything that we have collecting? I guess, do you think it's created more mental health stuff in the diabetes realm, because

Scott Benner 58:26
won't change a goddamn thing. It's like everything else, there's 10% of people who are going to really pay attention to it, they're going to love it, they're going to use it, a small percentage of them, we're gonna go kuko nuts over it. And everyone else is going to just go like, I just shoot my land as it all works out. Like get it. I mean, like, people, again, are always the last speed bump. Right? So you're asking, Will AI get to the point? Like, it isn't a movie for diabetes? And I would say not in my foreseeable future. But here's the caveat, I do have a lot of hope about this. The way things are figured out now for medicine, like, you know, people become researchers, like not every doctor is that is see somebody with a stethoscope, right? Some people work in labs their whole life. Some people work very hard and do good work for an entire lifetime. And they're actually going in the wrong direction. And they don't even know it. They're just going through the scientific process. They're doing what they're supposed to be doing. They get to the end of their career, and they go, Huh, I zigged when I should have zagged How about that? And it's the amount of waste of time it's how it works. I don't see how it's not possible that in the next 10 years, we don't have AI, running tests, and and doing decade's worth of work in a couple of days in short time. Yeah, yeah. And saying, Oh, we tried that path. It didn't work. Throw that away do that or here's what we learned here. And to keep compiling it together, that I actually think is gonna happen

Jennifer Smith, CDE 59:55
as a time saver in research and information and bringing together faster you My

Scott Benner 1:00:00
lifetime, we're gonna see things happen with medicine that we didn't imagine because AI is going to be able to run the lab workforce, like, that's my expectation, and that that I actually kind of believe in. So none of us are gonna have jobs, if that works, we're all going to be button pushers, like or algorithm askers, or something like that, you'll be the vice president of, Hey, Siri, tell me, I shouldn't say that out loud. And so but like, you don't mean like, eventually, you'll just be able to run tests over and over and over again and validate them and validate them and validate them and come up with life lifetime's worth of work in in very short order, and then make some decisions that I'm hopeful about actually. And I don't think that's crazy to say, if I'm if I'm being honest, but these apps the way they are right now, they're gonna tell you, Hey, eat something to avoid a low or right you go for a walk right now for this many minutes, we think your blood sugar will fall this much. I mean, that's,

Jennifer Smith, CDE 1:00:55
again, they still require input from the user. And that's where it's the more factor in a lot of these, that could give you some, I guess, some decision tools, but you have to take the effort to tell it what you're gonna do, or what you've done in order for it to make enough and I guess, to gather enough to tell you what to do next time. And like you said, it's a great concept. But a lot of people it's just it's too overwhelming already know,

Scott Benner 1:01:25
we live in a society now where kids in their 20s Don't have sex anymore, because it's too much effort. Like if you can't put the effort into getting laid Jenny, I don't know how you're gonna put the effort into bringing down your fat rise on your, your pasta Bolus, right? Like, I mean, seriously, like, like, we're very insulated at this point. And people have a very high expectation that things are going to happen quickly, and just happen without a lot of input. And this is always because of all the variables we're talking about all the time. All these variables that impact your blood sugar, that the thing, the algorithm, whatever is going to need to know all these things are happening to give you back good data. And more importantly, companies that make money aren't going to put themselves in legal jeopardy by promising that if you forgetting to tell, if you saying there's 30 grams of fatness when there's really only five is going to give you a four unit Bolus that you didn't need. And then you're going to turn back to the company go hey, you're you're working. You're working on this machine tried to kill me just now. No one's gonna get involved in that. True. That's it. You want to fix people with diabetes right now in a way that is value fix people help people with diabetes in a way that's valuable right now. I'm not kidding. Two guys have briefcase full of money, fly to Russia find Ivan drag his ass back here and have him put his algorithm in your pump. And I guarantee you a year from now I'll be doing ads for your pump and everybody will buy it and that'll be the end of it. I fixed your whole game and I want a piece of that money by the way, damaged by

Jennifer Smith, CDE 1:02:50
give you the idea on a piece or find a piece

Scott Benner 1:02:53
of the money to Jesus, I just lost half my money just like that. All right, thank you. We're gonna do more of these because you and I are. Yay. I don't want to say during the recording because it will sound pompous. But I want to say we're very good at this. And I found this enjoyable. Yeah, we're gonna do more of this. I like okay.

Jennifer Smith, CDE 1:03:11
Yeah. Okay, bye.

Scott Benner 1:03:19
I'd like to thank ag one for sponsoring this episode of The Juicebox Podcast and remind you that with your first order, you're going to get a free welcome kit. Five free travel packs in a year supply of vitamin D. That's at AG one.com/juicebox Arden has been getting her diabetes supplies from us med for three years, you can as well, US med.com/juice box or call 888-721-1514 My thanks to us med for sponsoring this episode. And for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at juicebox podcast.com. To us Med and all of the sponsors. A huge thank you to ever since CGM for sponsoring this episode of the podcast. Are you tired of having to change your sensor every seven to 14 days. With the ever since CGM you just replace it once every six months via a simple in office visit. Learn more and get started today at ever since cgm.com/juice box. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. You have questions Scott and Jenny have answers. There are now 19 ask Scott and Jenny episodes. That's where Jenny Smith and I answer questions from the audience. If you'd like to see a list of them, go to juicebox podcast.com up into the menu and click on Ask Scott and Jenny. Actually, I think there's way more than 90 At this point, but you get the idea. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

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#1189 Pee in a Tree

Sari's daughter had type 1 diabetes and today we talk about camp, pilonidal cysts, fighting with nurses at school and the Omnipod 5.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android  -  Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome to episode 1189 of the Juicebox Podcast.

Today I'm having a completely delightful conversation with salary. She is the mother of Jolie who is 15 now, and has had type one diabetes for a few years. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. If you're interested in helping with type one diabetes research, but you don't have a lot of time, you can still help AT T one D exchange.org/juicebox. All they need you to do if you're a US resident who has type one diabetes, or is the caregiver of someone with type one diabetes, all they need you to do is complete the short survey T one D exchange.org/juicebox. Your answers to simple questions will help to move type one diabetes forward for you, for your child. And for everyone. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout that's juice box at checkout to save 40% at cozy earth.com.

This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com forward slash juicebox. Today's episode is sponsored by Medtronic diabetes, a company that's bringing together people who are redefining what it means to live with diabetes. Later in this episode, I'll be speaking with Mark, he was diagnosed with type one diabetes at 28. He's 47. Now he's going to tell you a little bit about his story. And then at the very end of the episode, you can hear my entire mini interview with Mark to hear more stories from the Medtronic champion community or to share your own story. Visit Medtronic diabetes.com/juice box and check out the Medtronic champion hashtag on social media. US med is sponsoring this episode of The Juicebox Podcast and we've been getting our diabetes supplies from us med for years. You can as well. Us med.com/juice box or call 888-721-1514 Use the link or the number get your free benefits. Check it get started today with us med. I

Speaker 1 2:42
am sorry. And I have a daughter Jolie who is almost 15 years old. She was diagnosed three years ago, we just celebrated her diversity on Wednesday. She got home three years ago from the ICU on Halloween. Oh, how

Scott Benner 3:02
did you swing that? Right? So

Speaker 1 3:04
I was laughing last night because so on Halloween three years ago, she was sitting in the basement collecting candy or you know sorting candy with her best friend as her friends eating all the candy and we were cooking hotdogs and feeding them to Jolie cutting them up in small pieces. So it felt like candy because we didn't know what else to do. Really. Like we're like hot dogs, hot hot dogs you could eat we don't we don't have to give you a shot, you know, we knew knew nothing even you know after four days of learning or learning in the ICU while you're exhausted. So last night when her blood sugar was out of control because we were like it's Halloween, do whatever you want. I was like you know what, maybe we should have gone back to the hotdogs would have been better. Maybe

Scott Benner 3:45
a ballpark franc would have been the right way to go. Right? Right. So that's you a handful of days, removed from being diagnosed three years ago, saying, I want you to have the experience of eating something in this scenario, but we can't let you eat this cake. We don't know. We have no idea what we're doing. Yeah. Crazy. And how did she respond to that? Not Well, I imagine the

Speaker 1 4:05
hotdogs back then. Yeah. Oh, she was fine. I mean, I think she was terrified to write. So that was so early on that she was I think she was like, oh, yeah, hotdogs are good, because then I don't need a shot.

Scott Benner 4:15
Oh, yeah. Oh, by the way, she was horse trading to get out of the shots probably at that point. Yeah.

Speaker 1 4:20
I mean, so, so new and so clueless. And yeah,

Scott Benner 4:24
it's funny how quickly that goes away. Where we're caring about like the injections or changing a pump. Isn't it something when you watch people online, they're like, Well, I don't want to get a pump because you have to put it on let's and I always think to myself, like Yeah, like one time every few days you do something for three minutes, versus what it is, but they don't. Everyone's scared of everything. No, at that point. Makes sense. Yep. What kind of thoughts were they do you know? I

Speaker 1 4:48
don't even remember I do. So I'm responding to a text from Jolie. Sorry, which was something we could talk about. I don't I don't recall what kind of hotdogs they were.

Scott Benner 4:59
That's okay. I was just looking for a title early on but it's no big deal.

Speaker 1 5:02
I don't know they weren't what is the one of the I can't even think like the all natural ones that are just not as good as the others the apple gate or something like that. Yeah.

Scott Benner 5:12
Okay. Yeah it's all garbage by the way if you talk to anyone are all horrible.

Speaker 1 5:16
Yeah, so I was a vegetarian for a very short time. Very short time. But my rule was I was a vegetarian but hotdogs didn't count.

Scott Benner 5:24
How did you become a vegetarian for a short time? Well, I

Speaker 1 5:28
just decided it wasn't healthy. It wasn't I have nothing against and I'm you know where the leather and eat the eat the animals but I don't know. I decided it wasn't healthy. It was college. But hotdogs. Hotdogs didn't count. Because hot dogs to me were like, a delicacy and weren't real meat anyway, so hot dogs are okay. I

Scott Benner 5:43
believe it's the scraps from the pig. Or cow if you get beef hot dogs. Yeah, a lot of something. There's a lot of something in it besides salt like phosphate. I don't want to guess because I don't remember. I'm getting too old to pull factoids out of my head about hot dogs. Anyway, okay, so she's home, your hot dog and you're on Halloween. What led up to you figuring out she had type one was it in the family or something you saw?

Speaker 1 6:07
So she has an interesting diagnosis story, or maybe not so interesting. And this is you know, kind of one of the reasons why I was like, I finally want to come on the podcast because I have this story, which is similar to so many others, but you know, just interesting. So March 2020. home from school, Jolie is in a mood crying a lot. I was like Wow, all the kids are crying a lot they're home they're not seeing their friends are trying to do school online. It was horrible. And little by little we were like this is crying the moods getting to be a little bit too much. Summer 2020 We would do a lot of hiking or attempt to to do a lot of hiking because what else are you doing when there's not a whole lot to do but we couldn't go anywhere because every time we said we were gonna go somewhere, Jolie said Is there a bathroom there? We were like get over it. There's if you need a tree, there's a tree like there's not bathrooms aren't open places. And she wouldn't go places because there weren't bathrooms and we couldn't figure out like what her obsession was was bath with bathrooms. And she was crying constantly to the point where we started talking to the doctors about some medication for depression, just figuring out what was going on. So through the summer is still going on. I mean, she was we were going to the doctor so many times her ears hurt her her legs hurt her she felt like she couldn't walk up the steps. Nothing finally we went to the doctor I want to say like the end of the summer and she had lost a lot of weight. And our pediatrician said you know go ahead when on the way home go and buy some ensure because we need to bulk her up a little bit left I stopped at the supermarket because I stupidly then listened to pediatricians and bought the Insure I got home so my husband who is the one who has to buy the Applegate hotdogs saw the insurer and said absolutely not. We will not give her that poison, which Little did I know it really would have been tough on her for sure. It would have been poison to her so we threw out the insurer didn't give it to her we're like okay, so what do we do? We've got a pucker up Why is she losing weight?

Scott Benner 8:02
If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, G voc hypo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you storage evoke hypo pen and how to use it. They need to know how to use Chivo Capo pen before an emergency situation happens. Learn more about why G vo Capo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma visit G voc glucagon.com/risk For safety information. I used to hate ordering my daughter's diabetes supplies and never had a good experience and it was frustrating. But it hasn't been that way for a while actually for about three years now because that's how long we've been using us med us med.com/juice box or call 888721151 for us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1 million people with diabetes since 1996. They always provide 90 days worth of supplies and fast and free shipping. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and Dexcom g7. They accepted Medicare nationwide and over 800 private insurers. Find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice box or just call them at 888-721-1514 get started right now. And you'll be getting your supplies the same way we do.

Speaker 1 10:38
Yeah, I finally said to Peter Hirsch, and we need to do something else. We were about to have an appointment to talk about medication for depression, because I was not sleeping at all. She was just crying all the time. She was it was so much stress. So we I think it was like a Friday we had the appointment with the pediatrician on Wednesday, I called the pediatrician and I said, Can we just do a full blood workup? This was Wednesday, October 27. And this is again, oh, whoa, timeout. Rewind big rewind. So in April of 2020 Do you remember all those articles and stuff that they would talk about COVID toes

Scott Benner 11:11
COVID toes?

Speaker 1 11:13
Do you remember? COVID toes remember? COVID COVID toes? So it was like a kid thing? So April 2020, we had a virtual visit with a pediatrician because Jolie had blisters covering her toes. Oh, wow. Yeah, it was a thing. So blisters covering her toes. But we did that virtual visit showing the pediatrician, you know, through our phone, the blisters on her toes, which she could not see.

Scott Benner 11:35
I had a phone doctor's appointment where they're like, hold it closer. Hold it closer, right? Ridiculous.

Speaker 1 11:39
The COVID toes were were a thing and the doctors like yeah, that's the thing like she might have COVID She might not but we weren't testing for COVID then so who knows. So that was that was kind of an aside that, put it in the back of

Scott Benner 11:49
your mind. By the way, American Academy of Dermatology along with the swelling and discoloration. COVID toes can also cause blisters, itch or pain. Some people develop pain raised bumps or areas of rough skin, right.

Speaker 1 11:59
So that was on top of everything else. And Jolie has always been like the boy who cried wolf. So we're like Get over yourself, like stop with the complaining every single thing was a complaint. Now back to October 27. I said to the doctor before we have this appointment about medication, can we please do a full blood workup? And the doctor said that is not necessary. We do not need to do that. And I finally said I'm not asking you. I'm telling you we're gonna do full blood workup before we decide to put my child on medication for depression fullblood workup

Scott Benner 12:27
was this a situation where I have a daughter so no wife was this the situation where it was like, Oh, this is a lady problem. She sad or something like that was it was leaning like that? No, no,

Speaker 1 12:40
no, no. I'm female pediatrician. No. It's just like, Oh, she's going through going through things. She's you know, she's lost weight because she's depressed. She's sad because she's depressed. Everything was like diabetes, never on my radar. So that was never something I even thought to ask about. But luckily we did the bloodwork up Wednesday afternoon, we took her into the pediatrician, I mean, into the to the hospital for blood workup as a reward for doing so well during the blood workup because I think she was really ahead of it at that point. We went to McDonald's and got her a sprite and whatever other junk because we were like, thank you so much. You did such a good job doing blood. And then at 1130 at night, and that that, you know, back in the day, I didn't sleep with my phone anywhere near me 1130 At night, apparently the doctor had been trying to call every phone in our house finally got through to my husband cell phone. And at that point, Julie was actually sleeping, which she was not doing a lot of probably because she was so out of it. And the doctor said to Jim, you need to rush her to the children's hospital emergency room. Jim turned to me and said we don't need to go to the emergency room. Her blood sugar's at 750. And I was like, just tell them that she's sleeping. And ask them if we could wait till the morning. Because again, I had no idea what you're talking about. Yeah, I had no idea what I meant. And she was like, no, no, no, we're, we're not waiting to the morning. She needs to be taken now. jumped up, packed enough bags. I had enough wherewithal to like, pack some blankets and her stuffed animals. I was like, if they're calling us at 1130 at night, we maybe we're going to be sleeping there for a night. I didn't know it was gonna be weeknights. Yeah. So off, we go to the emergency room. And at that time, you know, nothing was open. And it was crazy, because we got to the Children's Hospital in Boston emergency room pretty quickly. They took her immediately. You know, they obviously the doctor said we're calling to let them know that you're on your way. They took her right away. And I mean, I want to say within like three minutes. They had an IV in her arm. And I was like, what's what's happening? Is this serious? I still had no idea what was going on. I was like, this seems kind of serious. Somebody I know from the town we live in was actually the ER doctor on call then random coincidence. And I was like, he said something about diabetes. I was like, Are you telling me she has diabetes? And he said, Well, I can't tell you that yet, but it seems pretty likely. And I still didn't understand why. You know, I didn't know that 750 blood sugar would mean that right? They said so again. Originally we yes she was, has diabetes she was in DKA. which to this day, I still don't really know how you determine if somebody is in

Scott Benner 15:06
DKA what gases other things like acidity

Speaker 1 15:10
of blood, you know that i They were talking things that again, I was so delirious at that point, I don't even know half of it. I was writing notes that I look back at my notes. I don't even can't even read them. So yeah, so straight to the ICU. And there we were about

Scott Benner 15:24
that. Well, you really did. You actually saved her by demanding the blood tests though. Yeah, but you were demanding it because you didn't want to put it on a on an SSRI if she didn't need it.

Speaker 1 15:34
I just wanted to see if there was something were missing. Yeah, I just didn't know. And then, you know, they think the pediatrician called us the second day in the hospital. And I said to her good thing. Good thing I asked you for the bloodwork. And she said, Oh, we would have gotten to that. And I said maybe when she was in a coma, like what when we've gotten to that we would

Scott Benner 15:50
have tried the medicine for a month. And then when it didn't make her happy, then I might have wondered what was going on there. She covered her ask that she that's nice.

Unknown Speaker 15:59
Yeah, she's not she's on our pediatrician anymore.

Scott Benner 16:01
I watched the doctor tried to cover their butt in, er two weekends ago when I, by the way when I had to fly across the country. So because Arden wasn't feeling well, and not diabetes related. Maybe similar to you and your husband's like, get up we have to go to the hospital. I was like making a plane reservation at two in the morning thinking we didn't have to have kids. Like what are we doing? On a plane at 7am? I had been awake for like some 30 hours by the time the plane because I wasn't planning on going anywhere, you know, and at midnight, she's like, Hey, I don't think I'm okay. And we started talking and like I assessed her over the phone, send her to the ER. And then I'm like, Well, I gotta go. I gotta jump on a plane because this isn't getting fixed. She she had just left the ER, like a day before and they didn't help her. So like, young girl in the ER, pain they couldn't like, they couldn't like put their finger on. So they started telling her like this could be in your head. That's why I asked about the girl thing. Like, like, like, yeah, like, it's, it sucks. But even even when you talk to like, I was talking to Arden's OBGYN the other day because that's the route we're gonna go next looking for what her issue was. This is a board certified woman, you know, like, who deals with women's issues. And she even said sometimes with girls, it just goes away.

Speaker 1 17:21
Oh, no, no, it was like, okay, so it wasn't her appendix was

Scott Benner 17:25
not her appendix. Oh, goodness, wasn't her gallbladder wasn't anything they could find. But you had to beat them over the head the entire way to get them to look. So we're not gonna give her that test. Like why not? I said everything points to that being a sincere possibility. Yes. Well, yeah, but we're not gonna test for that. said it's an ultrasound. What do you mean? Just right? Check her gallbladder while we're here. You know, like that kind of stuff. Anyway, I had a terrible experience that I've ranted about in other episodes, so I won't bother telling you about it. But okay, so you got rid of your pediatrician? Was she younger? or older? The pediatrician or not middle aged? Mother even. It's interesting. Yeah.

Unknown Speaker 18:06
I mean, people love her people love her. Well, yeah,

Scott Benner 18:09
their kids haven't actually been sick. Right.

Speaker 1 18:10
And, you know, I will say that we kept her for a while until she did something else that we didn't like to my other daughter, actually. And I kept her on because I said, You know what, she's a bridge. We're not using her for any medical advice. We're not using her for any direct help. She's my bridge to every other doctor. So that was that was kind of how I was using her as the bridge, I would call her and I think she was almost scared of me at that point. And I'd say I need a referral here, or you're going to send me to this doctor and she would say, okay, yeah, so we got whatever we wanted from her until finally I said and not dealing with her anymore.

Scott Benner 18:41
Do you mind? And you don't have to, of course, but like, can you give me a brief overview of what happened with your other child that made you finally leave?

Speaker 1 18:49
I think the I don't I don't think this is an exaggeration, but she violated HIPAA rules. She told me she spoke to somebody who I didn't want her to speak to about my daughter. Oh,

Scott Benner 18:59
lovely. Yeah, I had a school nurse who on their own called Arden's doctor one time. Yeah, I bet you that person's never done that ever again to anybody. Yeah, I didn't need the phone. I was yelling so loud at her. Like she could have hurt me across town. Maybe

Speaker 1 19:17
my yelling was through the portal and all caps was like you didn't just talk to her. Did you? Yeah,

Scott Benner 19:21
I think I started that conversation. What do you think you're doing? And it degraded from there? Yes. Yeah. Well, I was just wondering, I was like, Oh, where are you?

Unknown Speaker 19:36
What you thought I was helping? No, you are not helping.

Scott Benner 19:38
Maybe you don't think so much. That might be your problem. I was so I was so upset. Anyway. Okay, so Well, that's a tough experience new new pediatrician better.

Speaker 1 19:49
You know what the funny thing is I actually haven't met the new pediatrician yet. My husband's met her once. We've got a well visit for Jolie coming up in next week. So I'll meet her for the first time. Cool.

Scott Benner 20:00
Okay, so Julie's home, she's got diabetes, you're tossing hotdogs at her like she's the seal at the circus. And what happens next? Like Where does it all go from there? And

Speaker 1 20:11
well, the funny thing is because of the timing, so now in the school district that we were in, so this is, you know, now November 2020. They were in school every other week. So one week was virtual one week was in person. And they did that because they had kind of like two cohorts.

Scott Benner 20:27
Got your scholarship figured out which we COVID was a problem, but okay, I got it.

Speaker 1 20:32
Right. So they split, they split the grade in half. So there weren't as many kids in school at one time. She was diagnosed during the home week. So when she was in the hospital, Wednesday, Thursday, Friday, she was actually on her iPad, attempting to do some work. And then on Monday, you know, Halloween was on a Saturday, that year, Monday, I was like, You're going back to school? What are you gonna do? So like, this is this is your life, you need to push forward and do it. So you know, it's funny. I hear some people say like, they kept their kids home for three weeks to figure it all out. I was not in that school. I was like, You're, yeah, you're going you're going back. You're getting back to life. So she went back on Monday and amazingly, Jamish did not miss any school.

Scott Benner 21:12
Once she's through the DA, do you have hindsight, you look back and go, Oh, the sadness, the crying the paying like the you put it all together? Oh, yeah.

Speaker 1 21:22
Yeah. I was like, no wonder why she was sad and all out of sorts, and her legs wouldn't move.

Scott Benner 21:27
How long was that going on? For?

Speaker 1 21:29
I mean, it was definitely since the beginning of the summer. Okay. diagnosed in October. Okay.

Scott Benner 21:34
He is a very slow onset. Four months, maybe? Does she have any clarity about it looking back? Like, do you know what I mean? Did she say, Oh, she ever said something like, oh, I should have said this to you differently? Or you weren't listening to me? Was she mad at you? Or?

Speaker 1 21:51
I don't think so. I don't know what No, no, I don't I haven't asked her about that. But I don't

Scott Benner 21:57
think so. I was just wondering if it came up. That's all because it's, you know, how would you know, first of all right, but at the same time, you know, if you're that young, you might be like, Look, I came to you and said I didn't feel well. And you know what I mean? Yeah, the why the why gets lost all the time. Your doctor missed the why? You know, like, I don't want to go anywhere without a bathroom. I mean, that's a pretty weird change for a person who hasn't had that issue for 12 years. Right. So you didn't say why you just said Don't be silly. Like that kind of thing.

Speaker 1 22:29
Get over it. Get over it and pee in the tree or something. But um, yeah, I mean, she still is kind of the boy who cried wolf. But now we take everything seriously. And we have since discovered so many other things that she's got going on whether they're connected or not, who knows? But um, I just

Scott Benner 22:45
jotted down Pina tree, but tell me about those other things. Just in case

Speaker 1 22:49
she ended up in the emergency room. I don't even remember when it was last the end of last year with pilonidal with a pilonidal cyst. Yeah. So now she she was diagnosed with pilonidal disease.

Scott Benner 23:01
Interesting to me. Sir, hold on one second. Why is that interesting to me? Oh, oh. My sister in law had one of those horrible. Oh, but that's not what I'm saying. I'm saying My wife has hypothyroid probably Hashimotos My daughter has type one of my son has Hashimotos and my sister in law had a pilonidal cyst. Interesting. I mean, coming together, right, the cyst, they remove it. So it was interesting.

Speaker 1 23:28
That was another one. I was like, did you fall down? Did you hurt yourself? She's a volleyball player. I was like, you must have fallen playing volleyball. You know, you just have a bruise on the bottom of your tailbone. Get over it, get over it. Finally, she was in so much pain that we took her to the ER and they were like, oh, you know, all the nurses were like, Oh my God, those are the most painful things ever. So yes, they didn't. They drained it, I guess which relieved the pain right away after more pain. And then now there's a pilonidal clinic at Children's Hospital Boston amazingly enough. So now she has that patient at the pilonidal clinic. So they need to so many weird terms there's they do pick picking. So I guess a pilonidal cyst is forms from dirt getting into the follicle hair follicles around your butt area. So they have to pick the pits, which means they kind of dig out the hair follicle and then stitch them up.

Scott Benner 24:25
cyst is an unusual pocket in the skin that usually contains hair and skin debris. The cyst is almost always near the tailbone at the top of the buttocks pilonidal cyst that usually occurs when hair punctures the skin and then becomes embedded.

Speaker 1 24:37
Right so in order to avoid more pilonidal cysts, they need to pop

Scott Benner 24:41
them out yet close these pits, or pick pick pick the pits I

Speaker 1 24:45
don't even know. So they still have a whole bunch of stitches in her butt crack. And now she gets laser hair removal covered by insurance. I was like you were the luckiest teenage girl around you can't laser hair removal. So then on top of that, then they discovered that she had an affair gonna say this on hydrogen, hydrogen Titus

Scott Benner 25:03
hydro lead. Gen Titus that

Unknown Speaker 25:06
hydro den Titus.

Scott Benner 25:07
I got it supportive. Have you ever heard that? Yes,

Speaker 1 25:11
yes, that's what it is. Yeah, because the doctors call it HS also called acne

Scott Benner 25:14
inverse is a chronic inflammatory skin condition with lesions including deep seated nodules and abscesses, draining tracks and fibrotic scars. These lesions mostly commonly occur in the in inter regional skinny line and armpits Thank you areas and areas rich in African glands. So now

Speaker 1 25:32
she could get her bikini line and her armpits lasered by Boston Children's Hospital just covered by insurance. I'm like, You are really the luckiest teenage girl around so

Scott Benner 25:42
read my eyebrows for me. While you're there, really? Hey, listen, what's your background? Like? I don't know where you guys from?

Unknown Speaker 25:51
I am a New Yorker. No,

Scott Benner 25:54
I mean, like, you know, like originally.

Speaker 1 25:55
Nothing exciting. More Jewish or Eastern European or

Scott Benner 26:00
nothing. Yeah. I mean, I just wanted to know if there was something there that, like they see this and I don't know. Yeah, I don't know if you were hairier, or something like that. I didn't know what to say.

Speaker 1 26:11
I mean, I mean, I've had laser hair removal. You know, more than most so maybe, but it's just I don't, I don't know. So that's yeah, so I've asked a couple of times, you know, are they any of that considered autoimmune? I think you know, there's been questions about pilonidal and hydrogen Titus if I'm saying it right. Being connected to autoimmune, some say yes, some say no. But um, but yeah, Lucky her all this stuff.

Scott Benner 26:35
Well, that's crazy. You mentioned anything else autoimmune. What's your one other thing or? No? That it? Withdrawal? Yeah, no, no. Okay. How about in the family? Are there other autoimmune issues? So

Speaker 1 26:47
my father has MS. I know that's kind of questionable being autoimmune or not. My husband's mother, we think have lupus. Okay. I have been told I have rainouts you've been told because your hands are cold? Well, because I've gone to doctors, and I mean, I don't they don't really do much about it. It's not extreme. But yeah. You saw I want to have my scarf on and welcome cold all the time. Your thyroids? Okay.

Scott Benner 27:13
My thyroid is okay. Your TSH is like under two.

Speaker 1 27:17
I don't you know, I never paid attention to that. I guess next time I get bloodwork done. I will, Joey's thyroid at her endo appointment just a couple of months ago was 3.4. And they don't want to do anything about it. Had some back and forth conversations with them. And they said with zero symptoms, they don't want to look further and we'll keep an eye on it. I guess

Scott Benner 27:37
that's interesting. Okay. So you went to the doctor, and you said what, I'm cold all the time. And they said, Oh, that's Raynaud's, and then go away? Well, I've

Speaker 1 27:45
had I had some like lesion type things on my feet that they had to check out. And then yeah, then they sent me to the rheumatologist and they were like, Yeah, you probably every now and then there's really not much to do about it now wear gloves that other gloves and socks.

Scott Benner 28:00
I heard him was. She was somewhere one day. And we were talking about maybe how she's kind of like a little flex that like too flexible. And I forget now I'm forgetting the name of the autoimmune disease that it's around that. And that doctor goes all into what it is. And he's talking about like, she's like, like, it's a science experiments like, Oh, that's interesting. That can be blah, blah, blah. And, and then he goes, Don't worry about it, though. There's nothing they can do about that. Like, thank you. Lovely. Yeah. Okay. So, in your notes, you say that after her diagnosis, you found the podcast pretty quickly. How did that happen? Right now we're going to hear from a member of the Medtronic champion community. This episode of The Juicebox Podcast is sponsored by Medtronic diabetes. And this is Mark.

David 28:44
I use injections for about six months. And then my endocrinologist in the Navy recommended a pump. How

Scott Benner 28:50
long had you been in the Navy? Eight years up to that point? I've interviewed a number of people who have been diagnosed during service and most of the time they're discharged. What happened to you?

David 29:00
I was medically discharged. Yeah, six months after my diagnosis.

Scott Benner 29:04
Was it your goal to stay in the Navy for your whole life? Your career? It was? Yeah,

David 29:08
yeah. In fact, I think a few months before my diagnosis, my wife and I had that discussion about, you know, staying in for the long term. And, you know, we made the decision despite all the hardships and time away from home, that was what we loved the most.

Scott Benner 29:21
Was the Navy, like a lifetime goal of yours.

David 29:25
lifetime goal. I mean, as my earliest childhood memories were flying, being a fighter pilot,

Scott Benner 29:30
how did your diagnosis impact your lifelong dream?

David 29:34
It was devastating. Everything I had done in life, everything I'd worked up to up to that point was just taken away in an instant. I was not prepared for that at all. What does your support system look like? friends, your family caregivers, you know, for me to Medtronic champions committee, you know, all those resources that are out there to help guide the way but then help keep abreast on you know, the new things that are coming down the pike and to give you hope for eventually that we can find a cure

Scott Benner 29:59
stick around at the end of this episode to hear my entire conversation with Mark, and you can hear more stories from Medtronic champions and share your own story at Medtronic diabetes.com/juice. Box.

Speaker 1 30:13
So I did, I might have actually been in the hospital. So I was I'm a, I'm a podcast fan. I've been a podcast fan for a while. And in 2020, I had podcasts that I listened to regularly just to have like, learning about what's going on in the world. So I think when I was in the hospital, I was like, there's gotta be podcasts about diabetes. So yeah, I listened to the podcast for a while before I even got on to the Facebook group. And I think the time that I was listening to the podcast, you were, I mean, maybe now you're too I just don't listen, I don't hear that as much. But there was a lot of you know, don't forget to join our Facebook group. And I was like, oh, have enough Facebook stuff. I don't need to be on social media more. And then finally, I was like, I should probably join that Facebook group. And I think, probably around January,

Scott Benner 30:52
I got on the Facebook group, okay, you find it valuable.

Speaker 1 30:55
I do, you know, early on, I definitely used it as like a, help me, help me help me started maybe feeling a little bit self conscious about how many times I was saying, Help me, help me help me. And then then it just felt like more of a support group and people who understand

Scott Benner 31:11
it modifies itself as you use it. And I do mention it, it's funny. There is there's a person I know who does. They professionally help people drive more traffic to websites, they do these, like these kinds of things. And she tells me privately all the time, you have this podcast, it's so many people listen to, and you never talk about the things you want people to do. Like the Facebook group, you never tell them about your website, like she's like, it's just like, you know, your ads work for everybody. They'd work for you too. And I was like, Oh, yeah. And then I make a note to myself on this whiteboard in front of me. And then inevitably, a week from now, I'll scrub it off. And then I'll be putting bumpers on the podcast, and I'll completely forget to do you there is a Facebook group, it's terrific. And you should go find it.

Speaker 1 31:58
It is I mean, it's funny, because I feel like I have friends on the Facebook group who I don't know, at all, but I just feel connected to them. And you know, just people who you communicate with on a regular basis or see their posts and get excited about, you know, their things that are happening, or their weight loss journeys, or their you know, new things that are happening, you know, it's exciting to feel that kind of connection to somebody,

Scott Benner 32:19
I did an in person thing last weekend. And I spent like the first 20 minutes hugging people like, I was there with Jenny. And we, I don't know what got into our head, I was like, let's walk outside and talk about what we're gonna do. Because I don't want to like ruin it for anybody. But we hadn't really, we don't really need to plan for when you know, something that's well, you don't need to plan to do it. You know what I mean? But we were going to talk about like kind of how we were going to start into it. And for some reason, we walked outside of the hall. And it turned into a receiving line it away. And I said I just leaned over to Jenny at one point, I was like, we made a mistake coming out here. And she's like, I'm like, we're never gonna get to talk about what we want to talk about. But you see the people, and then you can picture them in like this little picture on your phone. You're like, Oh, my God, I know you. And then you know, people are hugging and it's really lovely. Anyway, I'm sure some people hear that and think that sounds horrible. I do not want to be a part of that. But it really is unlike most experiences on Facebook. I feel Yeah. Anyway.

Speaker 1 33:20
Yeah. I mean, I think that the summer after jewel is diagnosis, I think I mentioned she went to sleepaway camp, she's always gone to an overnight camp, and she was very set on going to the same camp that she's always gotten to, you know, and we had heard diabetes camp is great, you need to do this. And she was like, no, why do I want to go to camp where my friends don't go, which is I'm going back to the camp that I've always gone to. So we spoke to camp, they were wonderful about it. And it was that summer that I think I got really much more involved in learning, learning more from the podcast, learning more from the Facebook group, because, you know, she was away for me. And she was living at like 300 for a very long time at camp and, you know, trying to manage her from afar and talking to other people about how to manage her. And that's when I was like, No, 300 is not okay, we can't we can't do that. And you know, that's when I started learning that a lot of people think like, well, as long as she's that low, that's okay. 300 is fine, as long as she's not low. And, you know, so I just started learning, learning, learning and teaching myself and figuring out how we could make things work a little bit better for her. Was

Scott Benner 34:23
that a full year of you living like that before she went away to camp?

Speaker 1 34:27
I mean, no, she wasn't living at 300 But like with

Scott Benner 34:31
the, with the knowledge you had, that was from October to the summertime. Right? Okay. Yep. And that was there something about being away from her for a little while that gave you the maybe the air to look into it.

Speaker 1 34:44
I think that was when her finally I realized that was when her numbers were high for too long, you know, and I realized it was that she was high for too long and and unfortunately that's kind of what happens at camp when she you know, she's gone back to camp a lot more and that it happens. But now we know how to bring her back down. and deal with it. You know, canned food is not healthy food, probably similar to college dorm food. It's not, it's not pretty, you know, you could say you're gonna have a salad with chickpeas and for some reason that hit says if she's had a full pizza, but um, and also, you know, as you know, I don't really know what she's eating when she's not with me. It's just very easy to control when she's home. But when she's away, I don't really know all the details. And she doesn't always want to share all the details.

Scott Benner 35:26
It's possible she has a cupcake in her hand and she's going it's a salad with chickpeas. Absolutely,

Speaker 1 35:30
absolutely. So yeah, so that was when I first realized like, Okay, what's happening now is not okay. And we need to figure this out. And I need to teach other people that this is not okay. And, you know, a little bit more learning across

Scott Benner 35:41
the board. Is your husband involved in all this with the diabetes? He's

Speaker 1 35:45
involved in a like, what can I do? can I how can I support but he does not have the the knowledge that I have. He he does not listen to the podcast. He does not know the details.

Scott Benner 35:59
This is apropos of nothing but you didn't meet a Jewish guy named Jim so right. That's not that doesn't happen, does it? I did meet a Jewish guy named John. That's amazing. Good for you. I don't know where you get that off. Like immediately. I was like, to be Jewish. His name's Jim. different questions, parents?

Unknown Speaker 36:20
Yeah. Yeah. For a lot of things, yes.

Scott Benner 36:28
I don't think most people would have picked up on that. But I have a special palette. So anyway, I was like, that doesn't make any sense at all. No, it doesn't matter. Brad and Adam nothing.

Unknown Speaker 36:39
Eric David, right.

Scott Benner 36:41
I mean, there's a lot of options. Nevertheless. Okay. So a boy named Jim. I wish this was about him, because I think that's the title, but we can't go that direction.

Speaker 1 36:52
Well, so when I was introduced to Jim, the friend that introduced us totally has nothing to do with anything. I said to her, you, we went on, I might, I don't know if it's our first date or so I somehow I ended up at his house for some reason. He was making dinner, whatever. And he had a Christmas tree up. And I called my friend and I said, you just introduced me to a guy who has a dog and a Christmas tree. You know, I hate dogs. I'm not interested in the guy with the Christmas tree. And she's like, Don't Don't worry, no, he just likes Christmas trees. But he's actually Jewish. And I was like, well, that doesn't make any sense to me whatsoever. One stream, and I you know, established a relationship. I was like, so the Christmas tree is gonna go and I guess the dog he was like, now the dogs are gonna, like learn to live with the dog

Scott Benner 37:36
is watching the Grinch next year? If that's what you're wondering, right? Podcast, helpful management stuff, mostly in the beginning? Or did you just dive in with everything?

Speaker 1 37:48
I think the management stuff was probably the most helpful at the beginning. And again, I you know, three years ago now, I don't remember how I started. But I remember, definitely, when I was at camp, it was all about the pro tips and all that I'm like, Okay, how do we how do we figure this all out? You know, and working with the school nurses who actually don't work with at all, especially now, Julie has nothing to do with the nurses, which was a little bit of a point of contention with her going into high school this year. But just you know, just trying to, to make sure that I know what I'm doing. It's best for her to try and teach her what's best for her. Yeah.

Scott Benner 38:23
So you tried to separate her from the, the nursing staff at the school and they push back?

Speaker 1 38:30
Yeah. So in middle school, the nurses followed her Dexcom. And that was pretty much all they did. I told them, they were not to reach out to her for any reason. They were not to call her down to the office or anything. There was a couple of times where they would reach out to me and say, is everything okay? And I said, Yeah, we're, we're taking care of it. Because Julie and I text all day long. So finally, I said to them, do you still need to follow her? And they said, Well, yeah, we we want to follow her. And it was, I didn't want to get into it. But it was I think even on the Facebook group I asked somebody about and they were like, well, if she didn't have a Dexcom, they wouldn't be following her. But I let them follow her through middle school. And then going into high school. When I met the nurses in they said, you know, so we're gonna want to follow her Dexcom. And I said, but you're not going to? And they said, Oh, well, we really require that we can, you know, insist that we follow the Dexcom of all of our kids with diabetes. And I said, but you're not going to follow Jolie. And I said, because you know, and I use that I said, if she didn't have a Dexcom, you wouldn't be able to follow her. She's fine. And they said, Oh, well, then if we're not following her, we, you know, we do need to know that for the first two weeks of school. So keep in mind this, a new school, she's a freshman. The first two weeks of school, she needs to come to the nurse's office, a huge, huge school. Our school has over 1600 kids in it. For the first two weeks of school, she needs to come to the nurse's office every day before lunch to check in with us. And I said, No, you're not gonna do that. And they said, Well, you know, it's something that we ask of all of our kids and I said, but she's not going to do that. I said the reason she's not doing that is because she wants a normal high school career. There's no reason that she needs to go and check in with you. You're not following her You're not going to ask her anything. There's nothing for you to do.

Scott Benner 40:02
Yeah, what will happen when she gets there? You guys gonna wave at each other? And then right? Yeah, right.

Speaker 1 40:05
So it worked, the push back worked. So they don't follow her. She does not stop and to see them. Funny thing is this year she's actually visited the nurse more than she ever did in middle school because one day her high school has been challenged with diabetes and food, I call it I say that high school is a candy culture. She has been high a lot, or at least been using a ton of insulin a lot. So one day her pug ran out of insulin. So she was like, What do I do? And I said, you go to the nurse, and you change your pie that you know, I brought them bucket of stuff. So she has supplies there. And she said, No, no, I'll just be fine. I won't eat all day. It doesn't, doesn't work that way. And she said, No, no, it doesn't. And then she had a volleyball game at night. And she said, Just bring me my bring me a pin. When I when you come to the volleyball game, I said, again, doesn't work that way. You need to have your Basal running. You need to have other things happening. You know, we can't just bring you a pen for if you're gonna give yourself a shot with a pen, which she doesn't even know how to do. Yeah. I said, you could just change your pod. You could do that quicker. Long story short, she ended up going to the nurse and changing her pod. I think she got scared enough that she just did it. But I

Scott Benner 41:06
just finished a recording with a young girl. Young she's like 20 fives, just type one. She was having a perfect pregnancy. It was going perfectly. And at 33 weeks, she got the flu. And couple days into the flu. She changed her. I think a T slim pump. And her cannula got kinked and not seven or eight hours after that happened. She was in emergency surgery. They were trying to save her baby. Oh my god. Yeah, because she didn't have insulin for seven hours. Like and probably had some but not enough for seven hours. She went to decay that quickly. And the baby was indicato oh my god, really? Oh, that's scary. Yeah. So babies, okay. But really, like she said, one of the last thing she remembers is the doctor saying I'm sorry, this is gonna hurt. We're trying to save you in the baby. And that was like, that's like one of the last thing she remembers happening before the surgery. Anyway, point is you can't go hours and hours and hours without and you

Speaker 1 42:07
can't. So she's going to change her pod. So she was like, Alright, I went to the nurse. Now I know where my stuff is. I was like saying they're not that scary. I didn't want her to think that. I don't want her to feel like she has to use a nurse. But I also don't want her to think the nurses

Scott Benner 42:18
understand. It's also super interesting that you're fighting against the thing that most people can't get their schools to do and they desperately want them to do, like, just follow them on Dexcom most schools are like, we don't want to be responsible for that. Right? You had a school was like, we have to follow your it's so I mean, I

Speaker 1 42:35
think for me because I follow her so closely and because I communicate with her so regularly. I do feel like it's a bit of an invasion of privacy. And I it's funny because I wonder I don't know if Joelle has gotten to that point yet for me like sometimes I wonder Does she think it's an invasion of her privacy that I know everything that's going on with her? I feel like she will eventually Don't worry. I very often get the text of I got it. You know that's that's the standard text. I got it. Leave me alone. I've got it. I know what I'm doing. I've got it. So I knew that she'd annoyed by by my reaching out. I just don't know if she feels like it's an invasion of privacy yet.

Scott Benner 43:07
I would remind her that she thought it was okay to go from one o'clock till seven o'clock without insulin then maybe she doesn't got it. As much as you think she

Speaker 1 43:14
doesn't ever got it. She doesn't ever got it. But she thinks she's got it. Yeah. Yep. High School has been challenging. It definitely has been challenging. Good luck.

Scott Benner 43:24
I don't think it gets any better. So I was gonna say something about my wife, but I don't think that's okay. Anyway, I don't think it ever gets better is what I was gonna say. And I'm sure I'm the same pain in the ass that I was when I was 16 as well. Not to say otherwise. I don't know what you do other than teach them, remind them repeat it. Wait for it to sink in and just hope you don't hope that learning doesn't have to come through. Like a horrible problem. Like that's, that's a really, yeah, hopefully that was, I

Speaker 1 43:57
mean, to your point of what we we don't want what most people do want to interesting story. Last year, Jolie was going on a field trip to some amusement park. And the field trip was divided by the clusters that they're in in middle school, they were going by cluster and each bus had a cluster or something like that. And Jolie came home from school one day crying that she got put on a different bus because she needed to be on the bus with the nurse. Yeah, I didn't go over well with me that did not I mean, I call I pulled like pulled over called the nurse called the assistant principal. I was like, what joint soulmate? She's on a different bus. Why is she not on the bus with everybody else did her cost her and she said she needs to be on the bus with the other diabetics. And I know there's different thoughts and in the diabetes community about terminology, but I was very quickly to say we don't label our children, please. Are you talking about the children with diabetes? I mean, I was just on fire at that point. I was like, Don't tell me she needs to be on the bus with the other diabetics. and for what reason? They said, Well, if there's an issue I said, if there's an issue that nurses doing now thing that were What are you talking about? They pull over just like the pull over bus without a nurse. It didn't go up? Well, but yeah, I mean, I appreciate their attention to wanting to take care of their children with diabetes. But you know, I feel like there's a point where, well,

Scott Benner 45:15
I take your point. So a couple of them actually about the about the, you know, this is private. I think that as well, like, you know, artisans. At that point, when Arden went to high school, high school was not our problem. The high school nurses, we had them pretty, we had them pretty beat down by that, like the nursing staff was was pretty amenable by that. For her. It was the middle school situation with a nurse who was like, This is what has to happen. This is what I do with all the kids, she and I are going to become friends. Artem looked across a meeting table me like, I'm not gonna become friends with this lady. Right? Like, she just wasn't interested in it. And I just said to her, I'm like, Look, you know, however old you are going into middle school. I was like art into diabetes for you know, a decade at this point. And she's like, Uh huh. And I said, we haven't known you the whole time. And she's fine. So we're gonna be

Speaker 1 46:08
okay, I appreciated the up for now. And she's not gonna be friends with Yeah, I

Scott Benner 46:12
said, I said, I'm so sorry. The worst thing I can think of is that my daughter spends an inordinate amount of time in the nurse's office, befriending a 50 year old lady. I think I don't think that's actually a good thing. And so, you know, I was like, No, thank you really appreciate it, like, seriously. But here's what we're gonna do. Arne and I are going to handle this through texting. And the good news is, is that if she drops that it's my fault, not yours. And you should have seen the legal person in the room lit up like it was Christmas Day. And you could see her go, oh, that's a good point. We're out of this. If he if we just do it this way. Like they literally once they realized they were giving away legal responsibility. They were thrilled to do it. And and that was it. So I think Arden had been in that nurse's office, maybe four times but always for like a pump change or like something like that.

Speaker 1 47:08
I mean, I appreciate the nurses, I appreciate that they are there. I appreciate they seem to be on top of things. Her school has 10 kids with diabetes right now. So you know, they seem to be somewhat knowledgeable, but I don't need them to manage her at all. Like they don't need to call her classroom and say your blood sugar's high, or your blood sugar's low. She she knows that, you know, so I just, I feel much better without them.

Scott Benner 47:27
I had one tell me once a lot of our kids get their best diabetes care here. And I thought, well, that's a different problem. That's not that's not a good thing about you. That's a Yeah, that's a, that's a different issue. Issue. You because you've got the kids running around in the height, like to hundreds go and like at least they're not low. And you know, like, and that's the best care. They're getting, like, you've set the bar pretty low, if that's what you want to like, put on your CV is what I was thinking. So anyway, yeah, I take your point. And I like I like that you stick up for it, and you're consistent about it. And you know, everything else did she get on the regular bus for the trip back? No,

Speaker 1 48:08
she had to be on that. That bus was the diabetic children. Yep. The diabetes bus? No, just that the diabetic children? Yes. But

Scott Benner 48:17
if we say diabetes boss, I can make that the title. So you can

Speaker 1 48:20
you can choose on the diabetes bus. So I feel like for so many things. I'm like on my soapbox, and I have to Yeah, I'm always like calling people and sticking up for what should be happening. And then and then I feel like I always step back and be like, Oh, my God, everybody hates me. Everybody hates me. Like I you know, I get so confident. And then I'm like, Oh, I'm not that confident. But do

Scott Benner 48:38
you dig back into whether or not you think Julie's upset with you being involved? Do you think she's good with you doing this stuff? Yeah,

Speaker 1 48:45
she is, you know, and there were some things I still do behind the scenes without her necessarily knowing like, you know, I send I have like a one pager information that I send to all of her coaches, I send a one pager that I send to, you know, all the camp nurses and in one pager if the school wants to send it, give it to her teachers. And I don't know that she knows that. I do that for all of those things. You know, she knows that I have conversations with people. But I think she appreciates appreciates it. She said I don't remember what it was. It was something recently maybe it was tryouts for something where she said you're going to you're going to tell Oh, she she's getting her lifeguarding certification soon. And she said, Well, you're going to tell them that I am going to need a break sometimes, you know, if I felt like I need a break, and I said, Yeah, of course. So I think she's also gotten to the point where she knows I'm gonna go and tell people that what's going on? I don't know if she knows what I give them or how much I tell them. But yeah, yeah, I think she does appreciate it.

Scott Benner 49:35
Hopefully she won't need a break while Someone's drowning. Hopefully not. I'll be right with you. I'm going to drink this juice box about a couple of minutes. Time need a little time and get right in there and help you. You should just paddle paddle paddle your feet, your feet. Oh my god, let's cool. She does a lot of stuff. She plays a bunch of sports.

Speaker 1 49:56
She plays volleyball. I mean, that's her. That's her main sport now. And she's she's always been a swimmer. She actually, when she was diagnosed, she was on the swim team. And literally like, four days after diagnosis, she went back to swim team again, because I was very much like you're doing what you're doing. So yeah, she but then swim team wasn't her thing anymore. And it didn't it was swim team was hard for management. And that wasn't why we left it. But she just wasn't interested in swimming anymore. Gotcha. But lifeguarding makes a lot of money. And she has discovered that she wants to have nice things. So she wants to be a lifeguard so she can make money.

Scott Benner 50:27
That's, that's and she's 15. She knows she's settled in on like, doing some work. That's really great. Well,

Speaker 1 50:35
she's settled in on me and not buying her everything that she wants. So she needs to figure out a way to deliver like, I'm

Scott Benner 50:39
not paying for that. Right, exactly. Oh, my son's been at his first job out of college for 10 months now. And a package arrived here yesterday. And he goes, Hey, he facetimes me, he goes, where are you at? I was like I was in the car. By the way. I don't know why kids don't call like, I don't know why everything has to be a FaceTime, like driving. He's looking at the ceiling of my car while I'm driving. And he's like, where are you at? I said, I'm out picking up something for mom. And he goes, Well, when you get home, call me back. And I'm like, okay, so I get home and I do a couple things. And I'm actually thinking, I'm gonna call call back and hit him. He calls me back. I'm like, What is this? And so he's like, go to the front door. There's a package there. And I'm like, okay, so I go to the front door, and there's two packages, and they seem very similar. And like, there's clothing inside of them. And I said, I have them It feels like clothing. I said they're addressed to you. He goes, Yeah, one of them's for you. One of them's for me. And I was like, okay, and he I opened it up, and he bought me a like an Eagles jersey. Oh, he's never bought me anything ever. And I was like, I tried. I was, I was very grateful. And I expressed that to him. But at the same time, I tried not to make a big deal out of it. But I was thinking I'm like, Oh my God, you used your money. And you taught me something. I was like, this is a lovely moment. He's never bought me any. I think he was proud to like, a US proud to be able to pay for it himself. Yeah, you know, really, really cool. So anyway, that's what it made me think of when I hear Julie's out there hustling to make her to make her money. Yeah, let's say let's say she needs what shoes. That's what Arden would buy. Shoes.

Speaker 1 52:16
No bags, shoes, headphones, decided that there's like a $600 pair of headphones that she wants that I'm like,

Scott Benner 52:23
no. Go for little kids out of the pool.

Speaker 1 52:27
Yeah, she she made she put together a Google slideshow of what she wants for her birthday. Which is next week. It was like, no

Scott Benner 52:36
orden de stresses at college by online shopping. And she wasn't buying anything. She just goes online and shops. She said it's very relaxing. And I'm like 10 shops. Okay. And your notes here. You talk about Omnipod five. Can we talk about that?

Speaker 1 52:50
Yeah, we so you know, as I said, I'm a ORM maybe I didn't say but as you maybe can tell I'm a bit of a fierce advocate and don't hold back so yeah, we got her the five Jun Jun 22 very quickly. So yeah, it was not easy was not easy, but I wanted her to have it before she went to camp. So she started she was on the dash starting December after diagnosis. So two months post diagnosis. We got her on the dash. So that was December 2020. And then she got the five in June right after it came

Scott Benner 53:21
out felt important to you because she was going away you thought well, maybe this will alleviate some of the spikes if she misses. Yeah, I

Speaker 1 53:26
thought it could help out with some camp management, which I mean, I think it does a little bit but I mean,

Scott Benner 53:31
it's just off the Bolus, but I still Ardennes at college, her biggest Arden's biggest problems with diabetes still are. It's her time. It's her time and attention, which I think is true for everybody. She's not Pre-Bolus thing long enough. And if she sees a spike, she doesn't jump on it. Those are her two issues. If she did that Arden would be back with like a high five a one se but she just like,

Speaker 1 53:58
and I will say I think it was just a couple of days ago Jolie was like, way higher than I wanted her to be when she came home. And she said, But I Bolus everything correctly. And I looked back in her history, which that's where that's her privacy thing. She's like, don't look at my history, because then I think you know what I do? I'm like, What are you had 100 carbs between nine and 11? What on earth were you? That was even before school lunch, right? So that's what she was want me to look at it. But I looked at it. And I said, Well, you counted for something at 230 50 carbs. But you were at 160. And you didn't do a correction with that. Oh, I forgot that. She does a really good job with most of it. But then I'm like, well, that's why you're even because that's that's the whole three units that you left out there.

Scott Benner 54:40
I think that's a good solid base, though. Like that. She's counting the carbs and giving herself insulin. Like hopefully she'll figure the rest of it out. But really she's doing it. You don't I mean,

Speaker 1 54:50
she is and I will say this morning I woke up and I said to her totally one day, not today, probably not in the next five years. But one day you're gonna thank me because last night I was up at midnight. I, too, am 4am 6am I did corrections every two hours last night, which is not the norm, especially now with Omnipod. Five, but after Halloween and it was a pump change last night and you know, everything went on Yeah, every two hours, I was giving her correction. And my, our high alarm is set at 140 at night. So every time she went over one more day I was back in I go to do a correction. I said, and one day, you're gonna have to do this yourself. And she said, Well, how am I going to do that? And I was like, I don't know when and I will say that scares me doesn't have on any alarm. She doesn't have on anything. She doesn't pay attention to any of it. But I'm like, at some point, at some point, you're going to do it. But for now, just just please know that I was up and free two hours last night.

Scott Benner 55:40
Maybe you can get her to set the alarms up on the on the during the summer, you know, and like get herself accustomed to like saying, Oh, I'm 140 or something I should maybe pay attention to this, like that kind of an idea. Who knows, I guess you're gonna have to do it incrementally. Otherwise, you're going to be in that situation where you're branching out or one day and you're like, you can't turn this alarm sign like, you know, it's not gonna go well, last night. I must have been the night. So we're Arden. I think poor Arden every time I say this, but Arden got her period yesterday. So she was like, she was wiped out. And she came back from her classes. And she's like, I'm gonna she told me, we were texting in the morning. And boy that she really knows how to cut her clothes. She had like, I think four units of insulin left in her pump. And she was like, class, and I texted her and I was like, hey, when is class over? And she goes, I'll be back in my room and a half an hour. And I was like, Okay, I'm like, you know that you need a pump, right? She's Yeah. Now I was like, okay, she goes, I'm either going to take a nap, or do my homework when I get back. And I said, Okay, well, for sure. Change the pump. That's the first thing no matter

Speaker 1 56:47
what you do, and you have the ability to see how much he has onboard with your system.

Scott Benner 56:51
It's Nightscout I can see how much insulin pump on Nightscout. So, so she's like, okay, like I will and she did like I could see that the pump suddenly had more insulin and and again, and she like she was a little higher. She was like 140 And I was like, you know Bolus, like because it's a new pump and and right now the algorithm thinks it gave you enough. So like, put in some extra insulin before you go do whatever you get into it. She was cool. She was good all that. But last night, I couldn't tell if she was asleep or not like I could see the last time she ate. And her blood sugar was good. And I texted her. And I was like, Hey, I lost your data. Like, I don't see your Dexcom. And she doesn't answer. And I'm like, Now am I bothering her? Or Is she asleep? Because it's like 1230. And I'm like, Arden? Nothing. I'm like, let me wait a little while to probably just come back on. Because I have to be honest. Like we never have problems like that. Like, like no data and like stuff like that never happens. And so an hour into it. I'm like, Hey, ARDS. I texted her again, she didn't answer I wait a little longer. So it's now been like 90 minutes, but no data. And it eludes me for some reason that even though I can't see her number I could see in Nightscout if she was still getting basil, because if she was getting basil, then that means the algorithm sees her CGM number, and I just I was so tired. I forgot that. So I called her. She doesn't answer she texts back what? And I said, Hey, I don't have any data from your Dexcom and she goes, okay. And then I'm like, Are you gonna take care of it? Then I didn't hear from her again. Anyway, at three o'clock in the morning, I finally like lost my nerve about like, just waiting for it to come back. And I called her and I woke her up. And I was like, Oh, I'm sorry. I thought you were up doing homework. Like it's a weird thing when your kids are in college like three o'clock doing homeworks not crazy. And she goes no, I am asleep. And I was like, Okay, I'm like I don't have any data. And she goes Thank you hear her phone click open and she was I have it. And I said I said as long as your phone as that I'm sorry I woke you up go back to sleep. And then she just like was gone. And you know two seconds later because something happened like I got her to open her phone I guess and it popped right back again. And all I could think when that was over was I really wanted to go to sleep three hours ago and then I'm setting an alarm like to talk to you this morning. And I'm just like, oh god like am I gonna be okay in the morning cuz I got like five hours of sleep. And and I feel fine, but it's it's tomorrow that will hit me now because I'm getting older. Like when I was younger it wouldn't have I would have been like, Oh, this is fine. I could have stayed up for nights with that with diabetes in the past but now it catches me like it really

Speaker 1 59:48
done no, my problem is I work nights, not like overnight, but I work at in the evening and that's when I start feeling like I'd rather be in bed and in my pajamas because I got three hours of sleep last night. But now I have to Yeah. function and talk to people. But how old are you? I am 40. I'm going to be 48 next week.

Scott Benner 1:00:08
What do you see in the next handful of years? Like it won't be like I should sleep. It'll be like, I'm going to sleep now. Goodbye.

Unknown Speaker 1:00:16
Oh, I wish I wish I could fall asleep.

Scott Benner 1:00:17
Do you have trouble sleeping? I do. I have a lot of trouble sleeping happens your mind races?

Speaker 1 1:00:23
Yeah, my mind races I spend staring at this friggin sugar pixel, you know, all different things. I get up every two hours to do a correction. I think my body's just trained to be getting up so much now that I just don't sleep. Well.

Scott Benner 1:00:35
I have to admit, the one thing people ask a lot about, that I'm still shocked by is, you know, we you were helping lard and you were helping her especially overnight, because I wasn't very involved in her diabetes for you know, the last maybe year and a half of high school. Like we were really letting her practice on herself basically before college, but overnight, it was still me. And when she left there was part of me. I was like, she'll be home in a week. Like, I don't know how this is going to work. And then I don't she set it on here. I asked her about it. And she goes, Well, you know, once I was gone, like, you know, it was like a don't die thing. So it seemed pretty important. So I take care of it myself now. And I was like, how do you do that? And she goes, I don't think I sleep as soundly as I used to. And I was like, oh, so sad. Okay, but she's probably right. You know? Probably right. Yeah. Anyway, did we miss anything? Oh, you fired your doctor Jocelyn. Oh,

Speaker 1 1:01:27
so that was interesting. So we went on the Omnipod. Five. And I love Jocelyn I love we have a fantastic, fantastic nurse. That was great. And a doctor who we liked. And she went on the Omnipod five. And it's funny, I feel like I sometimes go to doctor's appointments and ask them questions, because I think it's what you're supposed to do, even though I already know the answers. So And oftentimes, I feel like I just no more than them. Thanks. Thanks to you. We went to the doctor. And I was like, I don't understand. And I feel like this still happens sometimes. If she's only Omnipod. Five. Why is she stuck at 140? Like, why does she like a very straight smooth line at 140? All night long? I don't understand why it's not still working to bring her down. And then the doctor was like, Oh, do you put her on? What's called Sleep Sleep mode. She said you put her on sleep mode. And I was like Omnipod five doesn't have sleep mode. She was like, oh, right, right, right away. Right. Then she was like, I was asking her some other questions. And she said, Well, do you use Basal IQ? And I said,

Scott Benner 1:02:23
that's different paths, different paths.

Speaker 1 1:02:29
And, and I mean, this is like our once a year doctor's appointment that we have with this doctor, I feel like we should get some attention and have her at least know what hump we use. And I like that was kind of the that was it. I was like, no, no, not not using a doctor who doesn't even know what our

Scott Benner 1:02:43
pump. I think if I had an endocrinologist who I said, I'm using Omnipod, five, and they started asking me about control like you or vice versa or anything else like that. And I said, No, no, you're thinking of the wrong pump, like giving them a shot to go, Oh, you're right, I'm sorry. And then they still don't know about the system I'm using. I gotta wonder like, they don't have a half an hour to learn about something they're talking about all day long.

Speaker 1 1:03:05
You know, she might she was like, Oh, I've been dealing with TCM patients all day. I'm like, but that's fine. I'm not one of them. Like we are not at the same patient. So I so I went back to Jocelyn and you know, our nurse, I said who's what endo Should we go to? Who has more knowledge on Omnipod? Five? So we are now using an amazing doctor who was part of the trial also.

Scott Benner 1:03:21
Sorry, the the bigger problem isn't that, in my opinion, the bigger problem is there's an answer for why you get a 140 stuff blood sugar on an algorithm. There's a way to like to handle that. And the answer isn't like did you try flipping the switch? Some people use the sleep mode, like you know, like, the answer is you've miscalculated something, the impact of food most likely, because the pump believes it has enough insulin, it's not giving you more or it's taking away your Basal, because it believes it's covered it it doesn't want to make you low, it's not going to just decide none of them are just going to decide, Oh, screw it, I'll ignore how much they told me they ate. And I'll give more insulin. They'll it'll do it slowly. But it's not going to do it aggressively. You have to look back and say, hey, you know what, this turns out this might have been 65 carbs. And we said it was 55 carbs, or what if

Speaker 1 1:04:13
it's during the night and we're so far past like this morning at four o'clock in the morning? Why was she still at 140 Even though she had already come down and then like drifted back up. I

Scott Benner 1:04:21
just don't understand that. Something's pushing her blood sugar up.

Speaker 1 1:04:24
I mean, so the past couple of weeks have been so tricky. She was really sick two weeks ago. And I've been hesitant to change settings. She was really sick. So she was running higher. And then I was like, well, maybe at some point, we'll have to change settings. But then I was like, let's wait till she's not sick anymore and see if she goes back

Scott Benner 1:04:38
illness hormones, like like, well,

Speaker 1 1:04:41
and now she's got her period. She's starting her period today or tomorrow. So I was like, well, we have to wait but now I don't know if the illness has has pushed her to need more insulin overall. So we might need to change her settings.

Scott Benner 1:04:52
The whole only point five two is an example like if you're having less of a need Tuesday, Wednesday, Thursday and then all of a sudden on Friday that needs greater. It's kind of considering Wednesday, Thursday. And that could be another issue too, like so there's there's a reason. But wouldn't it be interesting to hear the doctor talk through those reasons? So yeah, Dr. Woods? Yeah, not not have to wait for me. It's ridiculous. Anyway, to all you doctors out there that don't know what you're doing. Thank you, I have a very successful podcast because of your ineptitude. And I appreciate it. Thank you. It's fascinating. I literally, if they knew what they were doing wouldn't have a job right now, and not that some of them aren't fantastic. Because a lot of them are, you know, probably, let's be honest, overwhelmingly, they're probably great. But there's enough sprinkled through there that people end up having issues like this, and they have to go other places to look for information. And

Speaker 1 1:05:45
there's something to be said, for the doctors who do the work all day long, and know so much and learn so much, but still don't live with it. You know, it just, it's just different. It's just different when you're living with it.

Scott Benner 1:05:59
I had this, uh, this kind of epiphany on Sunday. So I went to Austin, and did this talk for the JDRF in Austin. And it was Jenny and I, and instead of Jenny, and I idea was like, you know, at these events, people show up for 30 minutes. Usually they stand behind a lectern, they put a slideshow behind them, and they say, some crap that you're just like, as boring and I'm not paying attention any of us and like, it sucks. And we said, well, if we're, if we're in control of what we're doing, like, you know, we don't want to do that. So we just kind of like almost like smartlace on the road style. Put like, two, you said, you were a podcast person. So I figured you knew that reference. So we've put two chairs on the on the stage, put a table in between us, sat down two hours, we just talked about stuff, and then sent everyone to lunch, by the way for people who have put on events and know the pain that no one comes back after lunch. Everyone returned after lunch. And then we did 1pm till 4pm. Three straight solid hours, we did q&a stuff. And like not like little bull crap stuff. Like we did long, deep conversations about everybody's questions. And what struck me, the epiphany I had at the end was, we could have sat there and done that for 10 hours. You know, when you have somebody who actually knows what they're talking about, it's interesting how easy it is to disseminate the information. It's when it's when you have a doctor who's like, I'm a doctor, I know what I'm talking about, then you realize they don't know the difference between two different pumps. Those are the people you're having stand up at these events, and read slideshows to people. And that's why no one's getting anywhere. I guarantee you, the people and that actually one woman left that room. And these people were listeners too, by the way, they were podcast listeners already. And a person got online and said, just being in the room and hearing the conversations, look at this graph for my daughter, we were already doing well. But look how much better this went just because I had a refresher and ideas were in my head and stuff like that. So anyway, it's doable. You just have to find people who are willing to let those kinds of events happen. I don't think you're gonna see it mostly, although, between you and I, because this isn't going to come out for a long time. I'll slip this in here. Come to Boston. I think one of the companies I do business with is going to do like a live event tour with me next year. I think we might go to a bunch of different cities and stuff like that. So fingers crossed that that makes it through the marketing meetings, and everybody thinks it's a good idea and that you come to Boston, Boston will be great. I think Chicago is on the list. Probably Philly DC like gonna try to keep me so I'm not like I don't die flying all over the country. But we'll probably pick a West Coast location and you got an empty nester what else you're doing. Well, every time I leave the house, my wife gets sick. I was gone for two days and I get this text. I have pneumonia. I'm like pneumonia. What are we 90 I was like what's going on? So she has long some long COVID symptoms, and then got around a person with a with a chest infection and didn't realize it and so now she's in the other room sleeping off pneumonia, along with a bunch of medication. So anyway, if I leave it she's gonna get dip theory next or something.

Unknown Speaker 1:09:18
Take her with you take her with him.

Scott Benner 1:09:19
I tried to get her to come back to work. Yeah, yeah, well, no, but somebody's got to get these. I got a kid in college. I was like it was like you get in there and make money. Anyway, anything we didn't go over or anything you've that we missed?

Speaker 1 1:09:33
I don't think so. I think we covered everything, plus more.

Scott Benner 1:09:36
Thank you so much. I really appreciate you were terrific.

Unknown Speaker 1:09:39
Thank you.

Scott Benner 1:09:40
Yeah, hold on one second. Great. Oh, did you have a good time?

Speaker 1 1:09:42
It was it was great. I was nervous. But um, I'm glad we did it. I'm glad I was able to see you and chat with you and in in real face to face you'll be nervous about oh, I don't know just saying saying dumb things or not sounding good. Although I won't. I won't know that until I hear it. You know, you didn't

Scott Benner 1:09:59
say anything dumb. Don't worry about that you gave a really good example of being direct with people and not apologizing for how you feel or what you need. And I think a lot of people could use that lesson once in a while so I think that was really terrific. Plus, you know, we'll get to find out one day about Julie and if she's actually answering your if she she actually having a cupcake but she's telling you it's a salad that's all I thought that point. Okay, hold on. Was that good for me?

A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. you spell that GVOKEGLUC AG o n.com. Forward slash juicebox. Mark is an incredible example of what so many experience living with diabetes, you show up for yourself and others every day, never letting diabetes define you. And that is what the Medtronic champion community is all about. Each of us is strong. And together, we're even stronger. To hear more stories from the Medtronic champion community or to share your own story, visit Medtronic diabetes.com/juice box. Don't forget, we still have marks conversation at the very end. It's a terrific kind of mini episode about 10 minutes long, that goes deeper into some of the things that you heard Mark talking about earlier in the show. A huge thanks to us med for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box, this is where we get our diabetes supplies from you can as well use the link or call 888-721-1514 Use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us med. And now my full conversation with Medtronic champion, Mark. Mark. How old were you when you were diagnosed with type one diabetes? I was 2828. How old are you now? 4747. So just about 20 years?

David 1:12:17
Yeah, 19 years?

Scott Benner 1:12:18
What was your management style when you were diagnosed?

David 1:12:20
I use injections for about six months. And then my endocrinologist at a navy recommended a pump.

Scott Benner 1:12:27
How long had you been in the Navy?

David 1:12:28
See eight years up to that point?

Scott Benner 1:12:30
Eight years? Yeah, I've interviewed a number of people who have been diagnosed during service and most of the time they're discharged. What happened to you?

David 1:12:38
I was medically discharged. Yeah, six months after my diagnosis.

Scott Benner 1:12:42
I don't understand the whole system. Is that like honorable? Yeah. I

David 1:12:45
mean, essentially, if you get a medical discharge, you get a commensurate honorable discharge. I guess there could be cases where something other than that, but that's that's really how it happens. So it's an honorably discharged with but because of medical reasons,

Scott Benner 1:12:57
and that still gives you access to the VA for the rest of your life. Right?

David 1:13:00
Correct. Yeah, exactly.

Scott Benner 1:13:02
Do you use the VA for your management? No, I

David 1:13:04
used to up until a few years ago, when we moved to North Carolina, it just became untenable, just rigmarole and process to kind of get all the things I needed. You know, for diabetes management, it was far easier just to go through a private practice.

Scott Benner 1:13:17
Was it your goal to stay in the Navy for your whole life, your career? It was? Yeah,

David 1:13:21
yeah. In fact, I think a few months before my diagnosis, my wife and I had that discussion about, you know, staying in for the long term. And, you know, we've made the decision despite all the hardships and time away from home, that was what we love the most. So that's what made it that much more difficult was

Scott Benner 1:13:37
the Navy a, like a lifetime goal of yours or something you came to as an adult?

David 1:13:41
lifetime goal. I mean, as my earliest childhood memories were flying being a fighter pilot and specifically being, you know, flying on and off aircraft carriers. So, you know, watching Top Gun in the 80s certainly was the catalyst for that

Scott Benner 1:13:56
you've taken off and landed a jet on an aircraft carrier 100 times is there anything in life as exhilarating as that? No,

David 1:14:03
but there there's a roller coaster I rode at. I think it was at Cedar Rapids up in Cleveland Sandusky, and they've got this roller coaster rotation from zero to like, it's like 80 or something. You go up the big hill and you come right back down. So the acceleration is pretty similar. I would say to catapult shot.

Scott Benner 1:14:21
I'm gonna guess you own a Tesla.

David 1:14:24
I don't I I'm a boring guy. I got a hybrid rav4 I get made fun of I get called. You know, my my wife says I drive like a grandpa. I'm a five miles per hour over the speed limit person. No more than that. So yeah, in the car. I'm boring Scott. So

Scott Benner 1:14:39
you've never felt a need to try to replace that with something else.

David 1:14:42
You can't replace it. It's a replaceable,

Scott Benner 1:14:44
that's what I thought. So

David 1:14:45
up until the point where someone you know, buys me an F 18 or allows me to get inside a two seater and fly it you can't replace it.

Scott Benner 1:14:53
How did it make you feel when you saw or maybe you haven't seen? gentleman named Pietro has his large aircraft license. He's flying For a major carrier, now he has type one diabetes. Does that feel hopeful to you?

David 1:15:03
Yeah, it does. You know, when I, when I was diagnosed, that wasn't a possibility the FAA prohibited commercial pilots who had type one diabetes, but I think it was 2017 when they changed their rules to allow type one diabetics to be commercial pilots. And part of the reason I did that was because of the technology advancements, specifically in pump therapy, and pump management. So I don't have any aspirations of going to the commercial airlines. But one of my sons who has type one diabetes very much wants to be a commercial pilot. So, you know, in that respect, I'm very hopeful and thankful. Yeah.

Scott Benner 1:15:36
Do you fly privately now for pleasure?

David 1:15:39
I do. Yeah. One of my favorite things to do is fly my kids to the different soccer tournaments they have all over the southeast us. So last week, my wife and I and two of our boys flipped to Richmond for their soccer tournaments up there, and Charlie, who's my middle child has type one diabetes. So you know if I can combine flying family and football and one weekend to me that's I think I've just achieved Valhalla. So

Scott Benner 1:16:02
then it sounds to me like this diagnosis was a significant course correction for you. Can you tell me how it affected your dream?

David 1:16:09
Well, I you know, if I guess three words come to mind first, it was devastating. Everything I had done in life, everything I'd worked up to up to that point was just taken away in an instant. And I was not prepared for that at all. The second emotion was, it was scary. I hadn't thought much about life outside the Navy, certainly not life as anything else, but a fighter pilot. And Heather and I were getting ready to move to France, I was going to do an exchange tour with with the French naval air force. So we're taking French classes. So pretty quickly, I had to reinvent myself. And then probably the most important thing at the same time that all that was going on, I had to learn how to deal with type one diabetes, and how to manage it effectively. The third thing that pops into my mind, I guess, is challenging. You know, new daily routines I had to establish first was injections, and then eventually, you know, through pump management, and then learning how to count carbs and recognize highs and lows, how my body reacts to blood sugar trends based on exercise and stress and those types of things. And my goal at that time, and it still is today is to leverage technology and make sure my habit patterns are effective so that I take diabetes management from the forefront to the background.

Scott Benner 1:17:16
Have you had success with that? Do you feel like you've made the transition? Well, I

David 1:17:21
have I mean, I believe in continuous improvement. So there's always more to do. I will say the technology since I was diagnosed specifically with pump management, it's just, it's just incredible. It takes less of me intervening. And it's really done by the pump itself, and by the algorithms, through the CGM EMS. And to me again, that that should be the goal for everybody is to not have to focus so much on the daily aspects of type one, diabetes management, you know, we should let technology do that for us. What

Scott Benner 1:17:50
else have you found valuable? I've spoken to 1000s of people with type one diabetes, the one thing that took me by surprise, because I don't have type one, myself, and my daughter was very young when she was diagnosed. I didn't really understand until I launched this podcast, and then it grew into this kind of big Facebook presence. I heard people say, I don't know anybody else who has type one diabetes. I wish I knew more people. But until I saw them come together, I didn't recognize how important it was.

David 1:18:18
Yeah, I think similarly, I didn't know anyone with type one diabetes growing up as an adult up until when I was diagnosed. And then all of a sudden, people just came out of the woodwork, and when CGM first hit the market, certainly within the last five years. It's amazing to me and my family, how many people we've noticed with type one diabetes simply because you can see the CGM on their arm. I mean, I would say, a month does not go by where we don't run into someone at a restaurant or an amusement park or a sporting event or somewhere where we see somebody else with type one diabetes. And the other surprising aspect of that is just how quickly you make friends. And I'll give you an example. We're at a soccer tournament up in Raleigh, this past Saturday and Sunday. And the referee came over to my son Charlie at the end of the game and said, Hey, I noticed you're wearing pomp. And he lifted up a shirt and showed his pump as well and said, I've had type one diabetes since I was nine years old. I played soccer in college, I'm sure that's your aspiration. And I just want to tell you don't let type one diabetes ever stop you from achieving your dreams of what you want to do. And this gentleman was probably in his late 50s or 60s. So just having that connection and seeing, you know, the outreach and people's willingness to share their experiences. It just means the world to us and just makes us feel like we're part of a strong community.

Scott Benner 1:19:38
So would you say that the most important things are strong technology tools, understanding how to manage yourself and a connection to others? Yeah,

David 1:19:48
technology for sure. And knowing how to leverage it and then the community and that community is your friends, your family caregivers, you know, for me, the Medtronic champions community, you know, all those resources that are out there. or to, you know, help guide away, but then help help you keep abreast on you know, the new things that are coming down the pike. And to give you hope for eventually, you know that we can find a cure. You mentioned

Scott Benner 1:20:10
that your son wanted to be a pilot, he also has type one diabetes, how old was he when he was diagnosed,

David 1:20:15
so Henry was diagnosed when he was 12 years old. That was just at the start at COVID, we were actually visiting my in laws in Tennessee, we woke up in the morning and he had his bed. And several years before that, we had all four of our boys tested for TrialNet. So you know, predictor of whether or not they're going to develop type one diabetes, and whether or Henry and one of his brothers tested positive for a lot of the indicators. So we always kind of had an inclination that there was a high degree of possibility he would develop it. But we always had at the back of our mind as well. And so when that event happened, at the beginning of COVID, we had him take his blood sugar on Michael commoner, and it was over 400. And so right away, we knew that without even being diagnosed properly, by endocrinologist that he was a type one diabetic, so we hurried home, to get him properly diagnosed in Charlottesville. And then we just started the process, first grieving, but then acceptance and, you know, his eventual, becoming part of the team that nobody wants to join,

Scott Benner 1:21:18
how old is he now?

David 1:21:19
He's 15 years old. Now,

Scott Benner 1:21:21
when's the first time he came to you? And said, Is this going to stop me from flying

David 1:21:27
almost immediately. So like me, he always had aspirations of flying. In fact, he out of all four boys wanted to be in the military, that was a difficult part of the conversation, and maybe something that we don't talk about as a community. But there are some things you cannot do as a type one diabetic, and that's a hard fact of life. And unfortunately, joining the military is one of those hard and fast things you cannot be, you cannot join the military as a type one diabetic. So it was very difficult for him and for me and my wife to get over. Then we also started talking about being a commercial pilot. And so I saw that same excitement in his eyes because like me, you know, he can be an NFA teen or a 737 or a Cirrus SR 20 That I fly, be just as happy. So he still has that passion today and still very much plans to eventually become a commercial pilot.

Scott Benner 1:22:13
I appreciate your sharing that with me. Thank you. You have four children do any others have type one?

David 1:22:18
They do? My oldest twin Henry has type one diabetes, and my middle son Charlie has type one diabetes as well. The boys are twins. The oldest two are twins. One has type one diabetes. My middle son, who is not a twin has type one diabetes.

Scott Benner 1:22:31
I see. Is there any other autoimmune in your family? There isn't I'm really the only

David 1:22:35
person in my family or my wife's family that we know of with any sort of autoimmune disease, certainly type one diabetes. So unfortunately, I was the first to strike it rich, and unfortunately, pass it along to to my sons with celiac

Scott Benner 1:22:50
thyroid, anything like that. Not about

David 1:22:53
nothing. We're really a pretty healthy family. So this came out of nowhere for myself and for my two sons.

Scott Benner 1:22:59
That's really something. I appreciate your time very much. I know I appreciate your sharing this with me. Thank you very much. Anytime Scott, learn more about the Medtronic champion community at Medtronic diabetes.com/juice box or by searching the hashtag Medtronic champion on your favorite social media platform. If you're not already subscribed, or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

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