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Podcast Episodes

The Juicebox Podcast is from the writer of the popular diabetes parenting blog Arden's Day and the award winning parenting memoir, 'Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad'. Hosted by Scott Benner, the show features intimate conversations of living and parenting with type I diabetes.

#1190 Ask Scott and Jenny: Chapter Twenty-One

Scott Benner

Scott and Jenny Smith, CDE answer your diabetes questions.

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

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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

Scott Benner

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 MusicGoogle Play/Android  -  Radio PublicAmazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT


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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#1188 Glass Half Positive

Scott Benner

Megan and Kevin are the parents of a child with type 1. Kevin also has type 1 diabetes.

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

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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 1188 of the Juicebox Podcast.

Today I'm going to be speaking with Megan and Kevin. Now Kevin has type one diabetes. He's had it actually for 40 years since he was eight years old. And now, Kevin and Megan's daughter, Lily, who is four has type one as well. This episode is a terrific opportunity for you to hear a husband and wife team talk about type one diabetes from different perspectives. 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 or becoming bold with insulin. Hey, do you have type one diabetes? Or are you the caregiver of someone who does? Are you a US resident? If you are those things, please go to T one D exchange.org/juice. Box and complete the survey. That's all I need you to do. And you will have helped type one diabetes research. T one D exchange.org/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. If you'd like to wear the same insulin pump that Arden does, all you have to do is go to Omni pod.com/juice box. That's it. Head over now and get started today. And you'll be wearing the same tubeless insulin pump that Arden has been wearing since she was four years old. This episode of The Juicebox Podcast is sponsored by the only implantable sensor rated for long term wear up to six months. The ever since CGM. Ever since cgm.com/juice box. An explicit version of this episode is available exclusively to Apple podcast Premium subscribers.

Megan 2:16
Hi, I am Megan. I live in North Carolina and I am the mother of a four year old who has type one. And the wife of a an adult who has type one, I

Scott Benner 2:33
thought you're gonna say an adult who acts like he's four years old.

Speaker 1 2:37
Well I do feel like sometimes I have four children instead of three. But I'd still love him. And that that is kind of why we're here today. To

Scott Benner 2:50
let us know that you still love Kevin. Ah,

Speaker 2 2:53
yeah, that's that's good to hear. Yeah, that affirmation is always

Scott Benner 2:59
appreciated. Kevin, you have type one diabetes for how long? I

Speaker 2 3:02
have. I've had it. So I just turned 48 I was diagnosed at eight years old. So I'm 40 years strong now. That's pretty cool. Yeah. So I've seen quite the the evolution over a long period of time and both sort of health treatment is recommended. And just that you know, the technology growth. It with this disease. It's been quite crazy to watch

Scott Benner 3:28
a massive Yeah, massive change. Hit. Can I ask Can I ask a question? Just jumping right in for a second. Kevin? You have two kids. It sounds like right. Three. We have three? Yep. Oh, I'm sorry. She I'm sorry. I counted her when she was like four. I don't know why I did that. I have four

Unknown Speaker 3:43
kids. Yeah. So you can Kevin

Unknown Speaker 3:46
is yeah, I'm the I'm the fourth. So.

Scott Benner 3:48
So three children. One of them has type one. He's he or she I'm sorry. He she she Excuse me? Our

Unknown Speaker 3:55
our youngest daughter. She's four years old. Okay.

Scott Benner 3:58
Yeah. So you've got two older children. It doesn't happen until your third kid. How old was she when she was diagnosed? to two. So this is two years ago. You're so Kevin, this is my point. You're 46 years old at that point, you know, 38 years into having diabetes. Did you ever think your children would have type one? Well,

Speaker 2 4:17
we it was always in the back of our mind, because I know just in my line of work, I do work in the research area. And, you know, I know how to read some medical literature. And so I think, you know, while the overall chance is still pretty low, you know, I think if you you know, if you have a parent that has type one, I think your you know, the chances that your child is going to have it is still is still going to be statistically you know, higher than if you if you didn't have it yourself, so it was always kind of in the back of our mind. I think what surprised us the most was that it was our young Just and not our middle child or boy, we were kind of expecting Alex pockets. If it's gonna happen, it'll be him. Yeah, he's looks exactly like me were they were basically the same, I think it tends to be a little bit more common boy. So we sort of always, if it was gonna happen, we thought it would be him. And it could still could be who knows? I don't want to jinx him. But we were just surprised that it was it was her. Yeah.

Scott Benner 5:28
How did she present? It

Speaker 2 5:32
was, you know, kind of typical, you know, we noticed that she was just thirsty, and go into the bed, go into the bathroom a lot. And we I think we did catch it very quickly. Because, you know, we knew there was problem when she was getting up in the middle of the night and asking for water. And, you know, the first time she did that we we finger checked her immediately and found out.

Scott Benner 6:00
So Megan, do you have the same feeling about wondering if the kids would have diabetes? Like is your you know what I mean?

Speaker 1 6:08
I don't I before this, probably not so much. I actually will say I really surprised about how little I knew about diabetes, even being married to somebody with it before all this so no, I mean, I guess it was always sort of in the back of my mind a little bit. I do agree with Kevin, I thought for sure. happened to one of our older too, probably our middle son. I do remember asking all the time at the pediatrician like what do you think my husband's a type one? And she would say, I think you're okay. I mean, we see it in families, but usually, I don't see it so much in father daughter, Father, Son, I'll see it in like, you know, Uncle cousin sort of situation. So I don't know that I was incredibly worried about it. I probably wouldn't have married Kevin, if I was that worried. No, just kidding.

Unknown Speaker 6:58
Gee, thanks,

Scott Benner 7:00
Kevin. I'm actually interested in that, like, so. It's too late. Now you guys are like, I mean, you're in your late 40s. But he been married for 20 years. When he was younger.

Unknown Speaker 7:12
I got lucky. Hold

Scott Benner 7:13
on, hold on. I didn't know Meghan was a trophy. Meghan, congratulations. First of all, Kevin, congratulations to you. This is lovely. Did you trick her or get her with money and goods? How did this go? Yeah,

Speaker 2 7:24
I think it came down to like she's saying she just wasn't that like aware of it. And it the other thing, Scott, too, is like for me, you know, just as background on myself, I maybe there's some favorable genetics or whatever. But just over the course of the years, I've I've had a pretty easy time with diabetes. My a one C's have always been great. And it's never really like afflicted me. At least not not yet. And so, you know, when she meets someone like me, you know, it's there's nothing really outwardly that's different, or that's, you know, that overwhelming in terms of how I handle it on a day to day basis. You know, she took my word that it was I've got everything under control. It just wasn't a big deal. Yeah, in our conversation, I lied

Scott Benner 8:18
to my wife a lot to when I was dating. I told her. Yeah, I was like, Oh, I

Speaker 1 8:23
mean, I I will say like the whole No, no, Kevin, I don't know, Scott, you talk a lot sometimes about, you know, the psychology of things and perspective and things like that. And, you know, it's interesting, because I think Kevin is definitely a glass half full type of person, and I am definitely not, I am half empty. So he always really didn't really dwell on diabetes, or it's holding me back or like, you know, I so I just, I never really thought much of it. I kind of just thought I handle it doesn't seem like such a big deal. Because his perspective has always been really positive, which is great. Mine isn't positive at all. I mean, it's taken me two years with our daughter having it to finally be like, Okay, I guess this is fine. Yeah. Well,

Scott Benner 9:11
listen, first of all that dynamic keeps the world moving. Because that that little bit of anxiety that you feel as a mom, that's what keeps everything going. Yeah, yeah, I'm positive that I would still be in my mom's house. If it wasn't for Kelly, I'd be like, this is fine. You know, Kelly's the one that was like, No, we need to do more. We have to go through this now. And I'm like, Okay, if you say so. You know, and guys, I think, you know, obviously, an incredible generalization, but that idea of like, just like we'll just run forward and make something happen. It'll be okay. You don't think

Speaker 2 9:43
yeah, I also think part of the just the, the outlook of, you know, the positive outlook on it. It it also comes partly from just being diagnosed as a as a child. You know, eight years old, it's, you know, you don't really you don't have I've kind of the, you know, the, the worldly concerns, and at that time social media did not exist. And it was, and I had a mother who was very task oriented. And, you know, once we got the system down, that was it, it was it was just, you know, it was a part of daily life, a part of your tasks each day. And, and I think, you know, while you know, having a two year old diagnosed for us, that definitely sucked, you know, for her, you know, I think the blessing is that, you know, it's, it's always going to be, she's never going to remember not having it, it's always going to be kind of part of her daily life. And I think I think that's gonna help her later, she, I think, will have less tendency for that, like that rebellion against diabetes, because I never had that I never like

Scott Benner 10:49
you're actually incredibly fortunate. You probably don't see it this way. But if you were diagnosed 40 years ago, management was nothing less you probably did an injection once or twice a day, right? Yeah,

Speaker 2 11:00
the mental load at that, well, just the load in general at that time was nothing. It worked more like, you know, just taking a prescription. You know, you take a pill a day, a couple times a day, and you all you only you checked blood, your blood sugar, like three times a day, you know, breakfast, lunch and, and dinner and you took your shot twice a day, basically. And you just stuck to the script, right? Somehow I always managed really good a onesies, but I have no idea what my blood sugar was doing in between.

Scott Benner 11:33
So many people in my private Facebook group talk about their love for Omni pod five. Have you seen those posts and thought I wish I could have that experience with an insulin pump? Well, if you've answered yes to that question, you might be experiencing foo fear of missing out on Omni pod. Symptoms of flu may include but are not limited to wishing you could wear outfits without pockets. fantasizing about jumping into a swimming pool without disconnecting from your insulin pump first, and dreaming about walking past the doorknob without getting your tubing caught. Good news. You do not have to suffer from FOMO any longer. You can see what you're missing, just by trying on the pod five for yourself. Visit Omni pod.com/juicebox To get started today. Yeah, this is why I call you fortunate because back then the measure of success was alive and not passed out. You're doing it right. Right. Yeah. And and that's not necessarily true. There are plenty of people who were diagnosed 40 years ago that aren't even with us anymore, because that didn't work for them. So you are in that like, who knows what it is? Maybe it's your mom's diligence. Maybe you got lucky with a doctor who guessed right about your insulin dosing and kept up with changing it as you got older. Like who knows, right? Yeah, yeah. I will

Speaker 2 12:50
say to like, I think, you know, what, as I moved later, you know, once I got into my 20s, and you really, you know, had to, you kind of take more ownership and control it myself. I started finding myself, you know, a little bit at odds with the doctors that I had, because I think even to this day, out of the treatment approaches are still too conservative. And, you know, for many years, even before CGM came out, I was essentially do trying to do what the CGM is do now I, I found I switched over to just being followed by my PCP at that time, who knew diabetes, and he would prescribe for me like 400 test strips a month, and I would check check my blood sugar like 15 times a day. And that's how just, you know, I just manually kind of knew what my trends were all the time. I think that helped a lot. And I was I was aggressive with my insulin. And I think those that period of time is, I think, really what I helped me,

Scott Benner 13:58
it's all fortunate. It's all very fit your personality works that way and everything else now. Megan, I have a question. After your daughter gets type one, how far into it when you start really understanding what's happening to her, and like, how her body's reacting and what all the variables are? How long until you take a quiet step back and think oh, my god, is this Kevin's life? I had no idea.

Speaker 1 14:18
Yeah. Wow. I mean, I don't know. I mean, I did definitely think that at some point when I don't know because I feel like I was so far up my own. I mean, I was just I had a hard time when she was diagnosed with it. Yeah, I actually don't think it was till a while after where I started to think like, gee whiz, like, I should convey this to me. This is pretty raw up like, you know, and I'll speak to Kevin's mom and say like, Oh, my God, how did you do this? And to Kevin's point, I think back in the day, it might have been easier just because they didn't have the technology they have now but yeah, I mean, I definitely have had those moments where it's Crazy how just being the mother is opposed to the spouse, for me has been way more eye opening, you know? Yeah.

Scott Benner 15:10
Can I ask Kevin? Did she has Megan ever voiced that to you? Or is that the first time you're hearing that? I? Yeah,

Speaker 2 15:15
we've talked about that, for sure. And Megan has had those conversations with my mom, which I think, you know, even though it was totally different when my mom was first, your

Scott Benner 15:27
mom's probably like, why are you trying so hard? Just give them one shot.

Speaker 2 15:32
Yeah, but that, you know, having having my mom to go to I think, I think he helped her with that as well. And and again, you know, it's like, I've been very fortunate and lucky and well controlled. And so, I don't know, you know, for me, it's I appear more normal probably, to Megan, then then then then our daughter Lily does. So

Scott Benner 15:55
when you say normal, do you mean less intensive? Like concerns and cares because yes, yeah, right.

Unknown Speaker 16:02
Yeah. Yeah.

Scott Benner 16:03
What's your management style? Kevin, what do you do?

Speaker 2 16:06
So, you know, right now, you know, I have a, I don't really use any set formulas, I kind of, you know, I am still I am still on the the original Omni pod. Okay, so I'm not even moved to the dash yet. Which I'm kind of you will be soon. I know. I know. I don't worry. We've got like a six month stock. Yeah, I

Scott Benner 16:34
think December if I'm not mistaken, and December's the date? They're gonna start making them. So yeah,

Speaker 2 16:40
yeah. But it's, you know, I think it's, it really follows. You know, much of what you talk about on your podcast, just being really diligent about Pre-Bolus Eat for meals. And then the other part of that, for me is is not overdoing things on the carbohydrate side. You know, in particular, I think the last six months or so, I've kind of moved to a lower carb diet right and, and I made my last day one seed. Just I got it a week ago.

Scott Benner 17:09
This episode of The Juicebox Podcast is sponsored by the only CGM you can take off to get into the shower. The ever since CGM ever since cgm.com/juice. Box. Well, I mean, sure, you could take the other ones off, but then you'd waste the sensor and have to start over again. But not with ever since ever since is a six month where implantable CGM. So if you want to take a shower without anything hanging on, you pop off the transmitter jump in the shower, when you get back out, put it back on, and you're right back to where you started. Come to think of it. You could do that whenever you wanted to. Maybe it was your prom night or your wedding day. Maybe you just don't want the thing on for a little while. But you don't want to go all through the hassle of taking it off and having to restart it and you know, starting back over with like wonky numbers and having you know all that that goes with it when you take off a CGM and put it back on Oh, but you don't have to do that with the Eversense CGM. Because ever since it's the only long term CGM with six months of real time glucose readings, this gives you more confidence, more convenience and flexibility. The Eversense CGM is there for you, when you want discretion, a break or maybe just a little adult time ever since cgm.com/juice box, pop that transmitter off, pop it back on, you're right back where you started without any wasted devices, or time.

Speaker 2 18:35
Oh is 6.2 which is pretty good for you know, I'd like it a little bit lower. But I've managed that while reducing my insulin intake by quite a lot just you know by having a bit lower carb diet so you know, it's always a mental game. You know, as a diabetic you don't overreacting in either direction. If you're on a low or a high that that will put you on the roller coaster and that's you don't want to be on on that it's keeping an even keel is the key for me. Yeah. can

Scott Benner 19:09
eat up your whole day actually. Yep, it can. Yeah, yeah. All right. So you're using Omnipod? Do you have a CGM by any chance?

Speaker 2 19:17
Yeah, yeah, I'm on. I'm on the G six. I have had no problems with the G six.

Scott Benner 19:22
Yeah, we never did either. Yeah. We

Speaker 2 19:25
just put our daughter on the libre, which I think is a better device for various reasons. And I may switch to that at some. Okay.

Scott Benner 19:34
Yeah, absolutely. Yeah, I think you should use whatever works for you. Yeah, Arden's using g7. It's been fantastic. And actually, I'm going to put a g7 on this week, too. I'm going to try to I'm going to try to get my numbers and put them online for people. So they seem interesting. Yeah, it seems to be I'll tell you why it seems to be really helpful for people to see a person who doesn't have diabetes and Watch their blood sugar ebb and flow. I think it alleviates a lot of your, you know, the worry of you know, when you see 140 after a meal, you're like, oh my god, it's over. You know, you're like, actually, I think everybody's blood sugar does that. Yeah. You just don't want to be in a situation where, you know it keeps going up or doesn't come back down and you know, in a reasonable amount of time, etc. Anyway. Okay, so what about your daughter? What is she managing with?

Speaker 1 20:24
So Lily's on an omni pod? Lily's Billy's been quite an adventure for us. We got her on the Omni pod the you know, the original mine, we got her switch. This is why we're on your podcasts because you put a post up in the Facebook group asking if anyone had gotten their little ones, I think on an Omnipod. Five, and would you be interested in coming on the show? And I think I responded and you didn't have immediate openings. So you sent the link for I don't know if this was probably a year ago? No,

Scott Benner 20:52
I gotta tell you, I just put that link up again for people. And we're talking in August 2023. Right now, I already see stuff on my calendar for or excuse me, we're talking in October 2023. I'm already seeing stuff on my calendar for August of 2024. So Oh, my God, I'm sorry about that. But yeah. Oh, okay. Oh, great. Let's talk about that. Then. Your setup here is too interesting not to talk about for a little longer. Also, if one of you can say, oh, Lily, at some point, I would love to make that the title as a Munsters reference, but that's a long way to go. If one of you could like work that out for me the next half an hour. So thank you very much. Just go Oh, Willie, and then I'll be all set. That's a pretty name. Yeah.

Unknown Speaker 21:32
We have a lot of practice saying that.

Speaker 1 21:35
You do? A few. Yeah. Bad words thrown in there. No,

Scott Benner 21:39
I actually, Megan, you're interesting because you have that you have that North Carolina thing in your voice. But you came so close to saying I was so up my ass when Lily was diagnosed. And I was like, Oh, she wants to curse. I hope she

Unknown Speaker 21:52
I am from Long Island. Oh,

Scott Benner 21:54
I have it in me. Alright, let's go.

Speaker 1 22:00
Yeah, it's hard for me to hold that Kevin gets he gets annoyed with me because I do have a potty mouth. And so does our four year old because of it.

Scott Benner 22:08
Excellent. I love Lily now perfect. Yeah. Yeah. Okay. So I just want to dig a little farther into all of this. Because Megan's obviously I mean, you're describing yourself as kind of like shell shocked, you know, when Lily's diagnosed? And I'm assuming her care goes to you? Or does it go to both of you? Yeah, I

Speaker 1 22:26
mean, Kevin will Yeah. Now, come on. Let's be honest, though.

Scott Benner 22:29
He's got a swagger carbs and to like, throw some insulin out or be like, I don't know, that should work.

Speaker 2 22:34
It is interesting, even though I am the diabetic. And if I had all these years of experience it, you know, 100%, more Magan D deals with Lily much more than than I do. And she's like,

Speaker 1 22:48
I go out with friends. And Kevin's texting me, like, what would you Bolus are for this? Hey, she's got this iob she's going up? What should I give her? And I'm like, figure it out. Two years. My man,

Speaker 2 23:03
I think there's a good point there, though. It's like, you know, it is very different. The treatment course between like a toddler and an adult, that's, that's had it for years. Like they, they don't translate all that well, in some cases, you know, because Lily's got, you know, growth hormones going on. And it's just, it's so different. You know, either

Scott Benner 23:27
the child aspect to the adult aspect or one day, by the way, female hormones, and you not having ever dealt with that. But But moreover, what you're describing is the problem that we see in health care for people with diabetes, because, you know, yeah, have you ever heard that, you know, when people are talking about big monumental problems, they'll say, Well, the last thing that could help this is if a generation dies off, like the if the old ideas go away, and I think that you're still just see a blend of this in the world. Like there's, you know, like, nobody at this point should be telling you if you get low you should take 15 carbs and wait for 15 minutes. But yeah, that's the thing that said everyday to people, doctors offices, right. Yeah. And you know, like all of this stuff that's left over remnants of the past impacting now. And and you're in Kevin's in his mind's doing great, right. Like even earlier, he said, I've always had really good a onesies. And Kevin, I want to say this, I don't think a 6.2 is not a really good agency. But if you tell me you've had diabetes for 40 years, you're a low carb and you're a one sees not in the fives, I think oh, he doesn't completely get it. Like and then again, nothing wrong with a six two it's it's absolutely amazing. You should be allotted for it. But you know what I mean, though, right? Yeah. Well,

Speaker 2 24:40
to your point sky can give you a great example of what you're talking about. I've had in the in the last year. You know, I've also I've had a one sees in the high fives last year, I had an appointment with my Endo. I was going in with a 5.9 That was my reading. And I'm telling you this You're kind of like a kid that you want to come home and show show your mom and dad your great report card, right? Every time I have a one sees like that and go in to my appointments. It's it ends up being a struggle session going through the graphs and the lines nitpicking and picking apart the lows and how do we address the lows? And from my point of view, I'm willing to accept, you know, a little bit of risk and having some lows mixed in. Yeah, if overall, that's going to mean I'm on average, lower and I can achieve those types of baby onesies, I think, in healthcare, you know, the sort of your standard endocrinologist doesn't really get that.

Scott Benner 25:45
No, no, it's funny, isn't it a person now you have a child with by the way, what's Lily's height? One say? Oh, last

Speaker 1 25:51
one. Well, so Okay, so it's usually around six to but her last one, which we want to dive into with you was seven because of her CGM issues, which we can explain.

Scott Benner 26:03
But I was just gonna say, though, that Kevin, you're in the doctor's office with a six two had been a five, nine, very stable, right? You've had diabetes for 40 years. Your kid has diabetes, and still someone sits down to you and goes on August 15. At 3am. What happened? Yep,

Speaker 2 26:19
yeah, exactly. Yeah. And it's all about avoiding avoiding lows. And I think, you know, the care that is prescribed, even to this day is still geared more toward that. I don't know, if it's, you know, just a safety, liability, liability, they want to avoid liability. And I would also love to see more diabetics go into endocrinology as well, I don't think I've ever had an endocrinologist that has actually had diabetes, huge

Scott Benner 26:49
help. It is huge help actually have been booking doctors who have type one, but are in other parts of medical care for a series I want to do like next year. Oh, yeah. Where I want to, I want to have doctors that are in like, all different practices come on, and talk about what it's like to watch healthcare from their perspective.

Unknown Speaker 27:10
Because that would be great. Yeah,

Scott Benner 27:11
I think that I think you're just right. So you know, there's that last aspect of it that if you don't have it, or you haven't managed it, like day to day, I don't know how you're supposed to know the rest of it. You know, it's almost unreasonable that you could, but Okay, so let's, let's get to why you're here. She's on on the pod five, I'm guessing. Yes.

Speaker 1 27:31
So she started on the regular or the original. And then we got her quickly switched to the Omni pod five, our Enzo was great. And, you know, wrote it off label for us pretty quickly when it came out. Got her on it. And at that point, she was on the G six. Yep. And we, I would say, had a tough time at first with the five in that. I think we thought falsely that hey, this is gonna solve everything for us. Yeah, you know, it was a little bit different than what we'll eat. But we thought but we got the hang of it and quickly realized that we had to fight the highs a little bit more than we thought it were then we'd like, we felt like she got high a lot on it and started to just be a little bit more aggressive with our boluses she was on that. I'm gonna say about June of 2022 22. She was on it did get

Scott Benner 28:26
it? Right. Yeah, right away. I think it was. It was in August, it came out or you guys got it like, day one.

Unknown Speaker 28:33
Like, it was really quickly.

Scott Benner 28:36
I mean, it was very early. Okay. It was

Speaker 1 28:39
very early. For her age, I think even like it wasn't even proved yet. But we had gotten it for her. And we're working on it. And we get her on it. You know, everything's great. I think the biggest the most significant change we saw was that night, way less wake ups. For us in her there was no really, I mean, it prevented flows really well. We were sleeping better. So we're doing good on it. It was great because she goes to a part time preschool where they don't have a nurse and so it was really great to have you know that that pod just stopped the insulin when she was going, Whoa. And in about June of this past year, so June 23. Her Dexcom stops becoming reliable for us. So her Dexcom are G six pretty much immediately after diagnosis. So maybe September October of 21. We get her on the GS six. It's working beautifully for us. I mean, of course hiccups here and there. Suddenly in June I don't know what start what happened. But she we started noticing a lot of either sensor errors or major discrepancies in her in her her CGM reading from what a finger stick would say. I mean, I'm talking

Scott Benner 29:52
it was reporting her lower than the finger stick. Yeah, yeah, way,

Speaker 2 29:56
way low right. Way more. Unbelievable. Yeah. And those lines were just Scott some of her lines on the on the air. It looked like a shotgun blast. There was no, in some cases no discernible line at all it was it was so strange. So strange.

Scott Benner 30:14
That was strange. So my first thought is hydration.

Speaker 2 30:17
Like, yeah, yeah, we we tried it all.

Scott Benner 30:21
Yeah, no kidding. And so did it ever, like come back together? Because, you know, it's funny, we talked about this all the time, but never really dig into it very much people in general, they make this one static, physical item. And then we plug it into countless I don't know how many customers CGM, you know, are two, they're not all going to work the same with everybody's body chemistry. And you know, when you see things like hydration, you know, that kind of stuff all impacting it, the site placement, etc. I think it's fascinating that we don't see more people. We're just like, this doesn't work for me. You know what I mean? Like it's but I've seen it be wonky for people, and then work again, and you're never Yeah, and you never really know what changed in the physiology that that led to that. I've also seen people just say, Look, this doesn't work for me. And yeah, you know, and have to move on. What did you end up having happen? Yeah,

Speaker 1 31:17
so I mean, extremely frustrated, because we really, I mean, this started in June, and we went all summer just trying and trying, we just kept getting them replaced, getting new ones trying different batches, trying different sites, hydration, no swimming. I'm like, maybe it's the swimming. We've really stuck with it. And it just did not come back. And it's the weirdest thing, right? Because they worked for us for a year like she had, right? I mean, what suddenly changed over the course of three months, you know, because again, we tried, she gave it three months like of this.

Speaker 2 31:48
And then we switch the switch to Dexcom

Speaker 1 31:52
g7. And that for us was really no better. I think, you know, it was a little bit better with the readings. Sure. But the major problem we had there was the connectivity if she didn't have her phone on her body doesn't carry. Yeah, she she's at school, and I'm flipping out texting her teachers like what's her blood sugar? So we quickly we I mean, we probably only did about four G seven sensors. I mean, they were failing to battle so

Scott Benner 32:20
yeah, they all fit. We went was a very loving a g7. It

Unknown Speaker 32:25
was this past September. Yeah, this is

Scott Benner 32:27
more recent. Okay. Yeah.

Speaker 2 32:28
So we we Scott, we went probably, I guess from that June period through September. I don't think we want had either the G six or G seven. We did not have any go pass? Like, what, five or six days? Negan? Yeah, maybe?

Scott Benner 32:46
Yeah, I'm fascinated. Because, I mean, I obviously get talked to a lot of people and a lot of people have access to me. And so when stuff first comes out, I'll tell you a secret when I don't care which sensor it is Dexcom libre, whatever, when they first come out, I don't pay attention to them. Because there's fine tuning to be done. The companies never come right out and say it but I don't, it doesn't make sense to me that they wouldn't need to see it on a lot of people before they could actually like dial it in the rest of the way, if that makes sense. And and I've seen that over and over again throughout the years with a lot of different devices. So the first couple of months, if people are like this thing's low, or it's high or two, I go and just wait a little while. And but then for some people, it's just never does. Arden has a friend who is like, couldn't use the sensor at all. Like it just they don't work for her. And I don't know why. You know, did you contact Dexcom and ask them?

Speaker 1 33:38
Yeah, no one can help me there. No one called Yeah, I was a regular. They just

Speaker 2 33:46
Yeah, eventually they stop denying our requests for replacements, because we had called so much. Wow.

Speaker 1 33:51
You know, I mean, they they tried to and then I was like, Oh, well, so yeah, you'll be.

Speaker 2 33:56
This is where the Long Island comes in useful. Scott. Oh, please.

Scott Benner 34:00
I told the story this morning. To a person who didn't grow up near me. That must have sounded so filthy to them that they didn't they were like, very aggressive. I was like, I didn't think so at all. They were like, it really is. Oh,

Speaker 1 34:11
this is just normal. Kevin. Kevin accuses me of speaking aggressively to him. And I'm like, What are you talking about? Kevin,

Scott Benner 34:17
you're fine. And so I had a European person telling me the other day, you're so direct. And I swear to God, I know this probably sounds ridiculous to the people listening but I thought I am. Right,

Speaker 1 34:31
right. Yeah. I know. I know. And then I stay standing up at night worrying about it. But yeah, I mean, I called I demanded a new transmitter. They sent us a new transmitter. I think what threw me and went through Kevin is that it works for her and I was like, surely you guys have seen this before? Like what is wrong? Like why was this marking?

Scott Benner 34:56
Vegans do you ever try putting one on

Unknown Speaker 34:59
you know, I haven't and I would love to if

Scott Benner 35:03
I do one, one. Because, like, because you're confident that if you pulled one of those out of that door today stuck it on her, it wouldn't work. So put it on you. If it works, then at least you can say to yourself, hmm, it. It's something between her physiology and that device. Yeah, you know, like, give some insight. It

Speaker 2 35:23
is. Yeah, it has to be because like I said, I've had no problem if it works perfectly for you. My lines are smooth as can be. Yeah, no, no, I

Scott Benner 35:34
started to say earlier, and I stopped myself. I don't know how I did that. But I did. I'm always kind of fascinated because people have access to me, I hear a lot of people's stories. Arden's Warren, I can't even remember them. All artists want a G for a g7 g7 plus a G six. And now a G seven. By the way, there used to be seven pluses before there were seven. I don't understand all that. Exactly. And now the current, the g7, in its current form, I've never ever seen a problem. Never like like, it's always great for her. I'm not going to tell you that you don't put it on. And for the first couple hours, you're not like what the hell, like you don't even like that kind of stuff. I'm not going to tell you that. You know, I don't test her blood sugar, or she doesn't test your blood sugar. And it's not off by 10 points. But I was just telling somebody this morning. Ironically, I'm watching someone were one who doesn't have diabetes. And they're like, my blood sugar always looks high. And then I test myself and I'm not. And I was like, yeah, it's only off by 10 points. And she goes, but my blood sugar is 90. It says it's 100. I was like, yeah, when you have type one diabetes, and like that kind of doesn't matter. Like Like, do you know what I mean? Like it does a little and maybe if you're really small, a little bit of insulin can make a big difference. But for the most part, once you're an adult, the insulin you get for a 100 or 110 is like yeah, it's all kind of the same, you know, you'll be able to see Yeah, it's well worth the investigation just to find out and then like so. A couple of questions. I guess. Kevin, how's your thyroid?

Speaker 2 36:58
My thyroid is great, according to my last labs, so I've never had an issue with my thyroid.

Scott Benner 37:05
What's your TSH? Do you know it when it? I don't

Speaker 2 37:09
know it? I've, if you give me a second, I can look those. No, I'll

Scott Benner 37:12
tuck them back in while you look. So I've seen like thyroid numbers mess up like CGM data sometimes. I don't know why I'm that. Trust me that could be completely made up and colloquial at best, you know what I mean? Like, but yeah, I also, Kevin's got he's had diabetes a longer time he's been with older endos. If he came back right now and said his th his TSH was four. I would tell him he needs thyroid replacement hormone and his doctors gonna tell him it's fine. And so like, I wonder if, like, is that a thing? We would check for Lily? Yeah, you know, yeah,

Speaker 1 37:46
she had a checked I think it was a year ago. And they of course told us it was fine. I you know, it's funny before I, we were coming on to talk to you, I meant to check it because I don't remember what it was. But it's that

Scott Benner 37:58
thing that once you have type one or an auto immune issue, you learn to not just hear it's fine and go great. You go What does that mean? What's the number? What's the range? Making? I want to know everything, you know? Yeah. Yeah. Do you think Kevin has? I have no idea why like Kevin's thyroid might be 1.6 when he gets back. Yeah.

Speaker 2 38:14
So Scott, my TSH is, this was just last week. One 1.04 Yeah,

Scott Benner 38:21
he's amazing. Okay, you don't have a thyroid issue. So like, you know, not that that would mean she could or couldn't just, I was just interested. Yeah, I don't know. Like nobody, Kevin no celiac for you? Nope, no, I

Speaker 2 38:33
never had anything like that

Scott Benner 38:36
more more, more autoimmune issues, you don't have that. Now.

Speaker 2 38:40
It's interesting, you bring that up. In general, I do have like allergies. And when I was, I don't know if it was linked at all in any way. But over the years, I when I was a kid, I had basically unexplained hives, and they would they would come about a lot of times in the summer, this would happen when I was a kid. And it would happen, you know, on a recurring basis, even in into adulthood. Especially like in my 20s, you just get hives, and they would be sort of symmetrical on your body. So you know, you get it on your wrists, the on both wrists or like, your, on your, on your thighs on the inside of your thighs be on both interesting or on your ankle, that sort of thing. So it was and no one could ever really figure out. Yeah, what was what was causing it, but I, you know, I I sort of just concluded, you know, I've got diabetes, I probably do have a bit of an over overactive immune, immune system. Well,

Scott Benner 39:39
I buy into that people with, you know, autoimmune stuff and the even just hay fever and stuff like that. That's all just immune response. Meghan, by the way, he didn't bring that up on a date that he

Speaker 2 39:50
Yeah, I think at that point, it was maybe I was in remission from the high

Scott Benner 39:56
Yeah, you guys were never dinner and he was like, by the way when I was in my 20s I got one lives on my thighs. I think come up at dinner did it?

Speaker 1 40:03
No, thankfully, because he would have been out.

Scott Benner 40:06
I'm sorry. I don't know what that means. But you gotta go. You gotta

Speaker 1 40:09
go. Yeah, yeah. I just pulled up Lily's her TSH was 1.7. And about a year ago. Yeah.

Scott Benner 40:17
I mean, that's really good. You know. So if it climbs over to and you see symptoms, do something. Just don't let them tell you. It's in range. That talk. Okay. Yeah, cool. Yeah, no, celiac for her. Nothing like that gluten stuff. What CGM is she wearing right now? Libra.

Speaker 1 40:35
We got her brave three. We started that.

Scott Benner 40:39
That worked better for Oh my gosh. Yeah. I

Speaker 1 40:42
agree. It has been great. Yeah, it's been night and day. It's been great. I'm so thankful the only thing that sucks is the night time.

Scott Benner 40:52
It Oh, because you can't use on the pod five with it. Correct? Yeah. Yeah.

Speaker 1 40:57
So it's just every day I mean, as you know, every day is different. So like, you know, last night she's low so I'm adjusting basil tonight to be you know, you know, while we're but then she'll probably be high all night. So it's just, it's hard. And crazy.

Scott Benner 41:12
What can she wear both me know her? Could she wear both? Like could you use a Dexcom? Yeah. Oh, okay. Socks. Oh, yeah. Yeah.

Speaker 2 41:22
We Yeah. And we when she was still wearing the G sailor G six we were like the the information that that the Omnipod was getting? Was this such garbage? We're you know, does it even matter that she's on automated because it I don't know how the automated mode could even work with what it was getting from? From her Dexcom?

Scott Benner 41:48
I don't think I'm talking out of school to say that I think Omni pod will make on the pod five work with libre soon. I think that's a goal. Yeah. Yeah.

Speaker 1 41:58
I think I read it. I think they are. I think they said the two though, which is weird, because I mean, yeah,

Scott Benner 42:05
I think once they figure it out with one though, it should be able to move pretty quickly to the next one. It's about it's not weird when they start doing that with the FDA. The libre two is probably what was available for them to work with. You know, so they'll get that. Okay. And then it should not take a lot to get the next okay. Because I don't think there's probably a significant difference between two and three as far as the FDA is concerned. Yeah,

Speaker 1 42:29
I think we're gonna try it again, though. I think over Christmas, when she's home from school for several days. Well, we'll try to put the G six back on her, you know, after giving it a rest for a few months, maybe, you know, maybe it was just something going on over the summer. I don't know. We'll try it again before

Scott Benner 42:46
Yeah. It's terrible. It's a lot to go through. Especially the false lows for months. is exhausting. Because I'll tell you what happens is at first you're like, oh my god, she's low. She's like, you test her and she's like, she's not learning. Okay. By the way, you calibrate after that happens? Yeah,

Speaker 1 43:01
like so we did when you can? Yeah. Sometimes it didn't accept it, because it was a 50 point discrepancy, so they wouldn't accept it. And then that happens.

Scott Benner 43:11
You just trick it. This is not medical advice at all. But if you're like a 50 point discrepancy in the CGM says 100. And let's just say the CGM says 150. And you're 100. Just tell it 120 And then let it readjust and then tell it again and like and kind of walk it forward to it. But I know it's still a pain in the butt. My point was, is that you see those lows? They're false or false or false. And then you think I'm gonna stop looking. That's not real. But you know, for God damn. sure that the first time you don't look, it's gonna be a real low and then you're right. Yeah, right. Yeah, let's take your time. No, I know. Yeah. That's terrible. Terrible. Well, I'm there's no way for me to tell you all this. How they get. Oh, I know. Don't told me that. You'd still be in the first doctor's appointment. And you you they'd be pulling you back in a window by now. So yeah, they can't tell you all this. You got to learn this slowly.

Speaker 1 44:03
Now, it's terrible. And I think that was what was the hardest for me is like when she was diagnosed, I'm like, Okay, so, you know, if she's like, at this level, her blood sugar, like, how many carbs should she have? It just there was no concrete answers for any of it. And I was like, What do you mean, and I'm turning to Kevin like, this is what you've been doing, like,

Speaker 2 44:22
well, in the thing was, it was not what I had been doing. I've never like card counted or had those formulas. I would I would go into my appointments. And they would ask me those questions. I'm like, I just have you know, at that time, I just had I had I always had my pin with me and I would look at the food I was going to eat and I just gave myself what I what I knew would be fine. What would work. I'm not sitting there working a formula out. And so that was another opener for you struggle session at these appointments. Yeah,

Scott Benner 44:51
yeah. But I mean, now moving forward a couple of years into it. You've got to be watching what Megan's doing with Lillian thinking like, oh, yeah, that's yeah. Oh, yeah. Crazy. See, right? Yeah,

Speaker 2 45:01
yeah. And since I've moved to the Omni pod Yeah, you know, I've got I've got my, you know, formulas in the in the pod but it's not, you know, I got to look at look at it to tell you what it is. Yeah,

Scott Benner 45:11
you're old school, you're still like you look at a plate and you go that's a units, that kind of thing. Right, exactly. You know, I understand. Wow, that's a lot. It's interesting. You guys are like a little like podcast science experiments. Very nice. Actually, for me, it's horrible for you. But it's really good for me, the podcast and people.

Speaker 2 45:30
I think I think for us, what will be really like where we want to be is that the libre working with the Omnipod? Five. And I think from there, you're back. And I know, there's probably there's FDA issues and approvals. But having the ability to remote Bolus with the audit, I think is for us what we would really ideally want,

Scott Benner 45:54
I gotta be honest with you, I could have used remote Bolus yesterday. So my kids 19 Yeah. She's doing this thing where she's, she's wearing, like, her pod site, obviously went wonky, like 12 hours before it was gonna shut off, like before she was gonna run out of insulin. And by that, I just mean that her blood sugar was very stable at 120. But the algorithm just couldn't get her below 120. And for people listening at this moment while I'm talking, Arden's wearing Iaps Do It Yourself algorithm. Yeah. And so, and it just couldn't move her. So I have access to like, change her target. So I made her target lower, which, which made the insulin more aggressive, which was able to keep her at this 120. But, you know, at some point, like, I sent her a text, and I was like, Listen, this, this pump is over, and she goes, this pumps not coming off until it's out of insulin. I'm too busy. And I was like, okay, so she was willing to live with the 120 for 12 hours, because she's like, I just don't have the time for this. And if she would have made a couple of like, correction, boluses I think maybe she could have pushed it into the 90s. But it's just, I mean, she's in college, and she's, you know, she's killing herself. And she's like, look, this is something's gotta give here. And this is what's going to be the thing today. Now, meanwhile, a 120. average blood sugar is like a six. So it's like a six to a one. Say like, I'm not sitting here worried about that. Right. But it's just, it's just the interesting, even I think it's interesting to say that even with the wonky numbers you were getting with the G six, or the g7. To that you were still having a seven a one C and sleeping through the night. That's pretty amazing. Yeah. So yeah, we

Speaker 1 47:37
thought it was gonna be way worse. We were honestly surprised, because we went into that appointment thinking, Alright, we're gonna be like, ate something. I mean, your

Scott Benner 47:44
whole problem was that it was reporting a lower number, so it wasn't being as aggressive with the insulin. That's, that's where you get the higher. Right, right. That sucks. I'm sorry. I'm not a soothsayer. But I bet you something changes with her. Or they make the I mean, you only mean like, one day, it just all works around the pod five versus Libra. And you'll look back on this is like the horrible six months where this was the problem? You know what I mean? Yeah, I agree with that. Yeah, it's important to keep that attitude too. Because as this stuff changes, and keeps you got to keep morphing with it, like Kevin knows now. Yeah. You know, like, honestly, man, like, 10 years ago, you should have been with all of us doing this stuff. But you weren't going to because you had diabetes for so long. You're like, this is fine. I'm doing fine. And now you now you know, it's it's eye opening? I would imagine.

Speaker 2 48:33
Yeah, it's interesting to like, I think you you made a good point about kind of identifying sort of what what are the big issues, your big obstacles that kind of still remain today in the character, diabetes, we talked about the, you're kind of just still the sort of an old, this old school approach that endocrinologist still have the day, I think there's also other kind of bigger things out there, you know, thinking about Lily going into school next year. And, you know, us, you know, as we've been talking to her, you know, her kindergarten school that she will be going to kind of seeing how, you know, this is handled, you know, in schools with with nursing and those sorts of things. I mean, it's very much it's, I mean, caveman days, in terms of how, you know, this is dealt with in schools. And so, it's really important, I think, you know, to have things like remote bolusing. And we're probably going to be looking at looping if if there's not a if there's not that option with Omni pod by the time she goes to school. So I think there, there's a lot of those sorts of big issues out there that are still kind of holding people back. And I think there's also just accessibility to the devices as well. I think it's a big issue. You know, the last couple of years. I think a lot of progress has been made on on making insulin itself more affordable and, and available, but to me that's only part of the equation it's you also got to have good access to the technology I think that's also lacking now with the way D Amis work and third party and

Scott Benner 50:18
it does loop not work with libre three,

Speaker 2 50:20
we don't know, maybe it does. We haven't started looking into loop yet. We were kind of hoping that Omni pod is going to have a remote Bolus option i

Scott Benner 50:33
Yeah, yeah. I mean, listen, between you and me, that's my hope and goal to is that just, you know, one day, you know, the retail algorithms are just a little more aggressive or customizable, or like, I don't know what the word you want to use. Exactly. I mean, it's, in the meantime, I have to say like, I'm of both minds when I talk about this, because I'm talking about it from our perspective. But I'm always tempted to talk about it from other people's perspective, which is the systems are amazing. And you should not be on Omnipod, five, control, like you, whatever the Medtronic thing is now the 780. Joel does it. And like, if you're on those things, you're doing amazing. Yeah, maybe they're not going to keep your agency in the fives. But wow. Like how like crazy is this technology? And you know, Are you a person who's going to like, build their own algorithm, like app and load it on their phone? If you're not that person? I wouldn't even think twice about it. You know, but yeah, also, I mean, doing what I do, it's just, it's easier for me, it's easier for me to speak up. And I text a lovely man named Mike. And I'm like, I don't know how to do this. And Mike's like, I'll jump on a zoom with you and show you because I like your podcast, and thank you and like, you know, like, I have a different reality than other people do. I wouldn't do it either. Like To be perfectly honest with you. Trust me when we got on the pod five, Arden was like this is great. Perfect. No more like, yeah, Dr. frankensteining an app on my phone. I was like, Nope, nothing like that. And it was the, the one thing that stopped her was the carrying the PDM. She was like, I don't want to carry another device. I want to go back and do do loop. So that's, that's what ended up happening. It's just that that one thing, like I don't want to carry this extra thing. And one day that'll be going to by the way. So you know, right? Yeah.

Speaker 2 52:20
And as as parents. Yeah, having the remote Bolus option means that, you know, we don't have to text the school nurse to say, hey, go give her Yeah, you know,

Scott Benner 52:32
it's a big deal. It's a big deal for reasons that people don't know to like you don't think of which is you know, you have a drifting up blood sugar at school. Now you're involving the nurse. Now the nurse, it probably doesn't make her more aggressive enough Bolus. And this is now a whole day and Lily school and her heads cloudy and like given any like it's, it's, it's a great idea. Also, I could make the other argument. Like what if somebody just Bolus and you didn't know it? And now you're Bolus thing again? And like, yeah, there's, you know, pros and cons to the idea. Exactly. Yeah. No kidding. Okay, what else? What else we got to talk about?

Speaker 2 53:06
Well, I think just to follow up on what you were just saying that you're totally right, that, you know, the technology is is amazing. I that's another kind of thing that we're thankful for with Lilly, you know, I mean, if you're going to be a diabetic, you know, right now is, it's a great time, you know, way better than 40 years ago, when I was diagnosed, it's the best time you could choose to be a diabetic, if you're going to have it, you know, because of the technology that we have. So, yeah, we are very thankful for that. No question about

Scott Benner 53:39
Kevin. And you're just one of those people, man, you're one of those lucky people like you came through I'm going to assume you did regular an MPH you probably did. Beat probably to beef important to write these input. You mean like the animal when I was the animal insolence?

Speaker 2 53:53
Oh, yeah. Yeah, at that time. It was I think it was pork. Yeah. Right.

Scott Benner 53:57
So you've been? You've been through all of that. And you're okay. Like, you don't have any

Speaker 2 54:01
Yeah. And it was Yeah, never even the diet aspect of it. year, you had all these tables of exchanges. This food for that food. You

Scott Benner 54:12
and you've heard me talk about like exchange like you'd used to do the exchange diet, right? Yep.

Speaker 2 54:17
Yeah, I remember that. When I when I was a kid. And it was even to check your blood sugar. You had it? It works the way ketone tests. Yeah, that tube of strips. Yeah. You checked your shirt, and you had to compare the colors. And I'm like, does it that was so imprecise. So

Scott Benner 54:34
please. Yeah, that was a while is the you've been but but my point is, is that I've talked to plenty of people who live through this. And right now there have a lot of complications. And I've talked to people who were just like, yeah, there's I have no problems. It's absolutely fascinating. And I've

Speaker 2 54:49
never had any complications other than maybe it's about 12 or 13 years ago, I had a very, very tiny spot of retinopathy In my left eye, and it was out of my field of vision, and it never didn't require any treatment, and it just kind of went away. Other than that, I've never never had any issues in terms of the issues with feet or vision or anything like that. So I do think that there are some genetics can can come into play, some people just won't, for whatever reason do better than that you're using enough

Scott Benner 55:26
insulin. It was dumb luck back then, really? Like you were just using enough insulin. Yep. Yeah. And you described being aggressive about it, which was probably very helpful.

Speaker 2 55:36
I mean, it to the great frustration of my endocrinologist, you know, they could not understand kind of what my system was, because it really wasn't a system other than I just, I gave myself what I thought I needed at the time. And I, you know, I didn't really hold back on it, and I was willing to deal with, with lows. You know, that

Scott Benner 55:56
was what we were talking about earlier. Right? Just kind of charge ahead and see if it's okay. Yeah. Okay. So we got these things covered, we're doing well, I like this, this is just flowing along. You guys are great. By the way, I appreciate you're doing a very good job of back and forth and not talking over top of each other. I appreciate this very much.

Speaker 1 56:11
It's really hard for me to not talk over him because he's so wrong. He's you know, he's from the south. And so sometimes I'm like, get to the point. You know,

Scott Benner 56:21
the podcast taught me how to do that. I wasn't I was bad in the beginning. In the beginning, I would talk over people. And then eventually I just sat here like wheeling myself not to speak. Right. Right. Begging. Let me ask you a question. When you realize that you know what he's going to say, but he hasn't finished saying it yet. That's frustrating, right?

Speaker 1 56:40
Oh my god. Yeah. If we were here in our living room, I would say it for him and walk out of the room. Yes, Kevin. That's

Scott Benner 56:46
a northeast thing, man. We're like, Yeah, we already know what you're gonna say. Let's go.

Unknown Speaker 56:51
Yeah. 100%. Yeah. We

Scott Benner 56:54
got to make more money and buy a bigger house. It just hurry up.

Unknown Speaker 56:58
Exactly. Yeah.

Scott Benner 56:59
And make it How great is that not to have to drive over that bridge anymore. Be honest.

Speaker 1 57:04
That's the worst. You know, I would never go back. Great. We live in a great place here in the south. But yeah, I mean, as long winded. Southerners, man, it's

Speaker 2 57:15
not just the talking. It's just that every perspective, everything is just slow. You have slow here, right? Yeah. So

Scott Benner 57:22
Kelly and I went to lunch. In Savannah. We were visiting Arden at school. I think it's out of the bag that art is not in Connecticut, right? And so like, so we're in Savannah, and we leave the hotel and Arden's got a class, so Kellen are like, we're gonna go get lunch, then we're gonna get art and later, like this whole thing. So we go to this little place, and we sit down. And let me just say, two fucking hours later, I walked out of there. I'm like, I don't know what just I had fries and a half a burger. Oh, my God, why were we in there? And all I could do while I was sitting there is think, why do none of these people have anywhere to be right? There's no pressure on their face. I'm looking around like, what do you want to make money? Oh, my God for money. I want to give you good. Yeah. Yeah. Like there's people waiting outside go take their money to him. Like nobody thinks about it like that. Yeah. So So Arden said recently, she goes, I love she does. This is a lovely place. This is how we knew. By the way, this conversation was gonna go sideways. Because she started off saying something very positive. She goes, this is a lovely place. I can't wait to get out of here. Oh my god. I'm like ratios. I can't live here. And she's like, what she goes, it's so slow. Like, I just I need people to want to be somewhere while they're driving. I need them to like, have some urgency. Like just She's like the grocery store. I'm gonna she goes, Dad, I'm gonna murder somebody in that grocery store. And I was

Speaker 2 58:50
in the south wait till she gets stuck behind someone in the line that still writes out the checks. Oh, I'm sure.

Scott Benner 58:55
Yeah, that will be on the news then at some point. Yeah, yeah. Young diabetic girl beats old woman in grocery store for writing check. I mean, she's really like, just like, my god. She's like, it's so slow. I can't handle it. And, by the way, conversely, my son's in Atlanta, and he's like, I gotta get out of here. I hate I hate this. I hate being in a city. Yeah, like,

Speaker 2 59:20
where we live is it's changed a lot over the years because we're our specific area. I'd say most of the population at this point is actually northeasterners now particularly from from New York, yeah, areas like that. So I think that is changing. But yeah, you know, sort of capital.

Scott Benner 59:41
We gave ourselves Anjan and making a pile of money we're gonna come by your house is now that's exactly what's happened. Yeah, there you go. Oh, worry. Yeah, we're on it. Oh my gosh. I want to make sure is there anything we didn't talk about that we should have?

Speaker 1 59:58
Oh, And I think we pretty much covered I think everything that we wanted to talk about. One thing I think is pretty crazy. You know, in in Kevin's family, there was no type one before he was diagnosed and that they know of I mean, I asked every time his mother here is here. I'm like, Are you sure? Like, are you positive? There's nothing.

Speaker 2 1:00:20
But we did leave out. Yeah, we did leave that out. Right? Yeah. identical

Speaker 1 1:00:26
twin and he has his identical twin brother is not a type one.

Scott Benner 1:00:30
What about Well, that makes that makes sense to me. But what about other autoimmune stuff, Kevin? Well,

Speaker 2 1:00:35
so the other thing about my brother hit, he has a 17 year old son that does that also has type one. So I have I have a nephew that has type one. So he's a carrier. Clearly, clearly,

Scott Benner 1:00:51
I've got a very scientific way of saying that. Well, what about other stuff in the family? I'll go through it with you. Celiac. In your extended family? Thyroid?

Speaker 2 1:01:00
Yeah. Well, now my mother, she had her thyroid taken out. She had like a gourd, whatever. It's called that condition where your thyroid swells. Yeah, the rule haven't

Scott Benner 1:01:11
Yes. removed. Rheumatoid arthritis.

Unknown Speaker 1:01:15
Not that I'm aware of.

Scott Benner 1:01:17
How about bipolar disorder? Not

Unknown Speaker 1:01:20
that I'm aware of. Okay. But yeah, although

Scott Benner 1:01:23
everyone goes, who knows? Yeah, everyone goes, I don't know. I got an Ant Man. I'm not sure. So like, but heavy hay fever through the families. How about vitiligo, like any other autoimmune stuff. Our

Speaker 2 1:01:35
son, our our seven year old, he does have peanut allergy, and just allergies in general. So yeah, just

Scott Benner 1:01:43
like allergic stuff. I gotcha. Hey, I asked the question very early on, I didn't get the answer to and it doesn't matter anymore. But I still wonder it. So I'm just gonna ask again. How long have you guys been married?

Speaker 2 1:01:53
Let's see. We had our 10 year. We were married in 2017. And

Unknown Speaker 1:01:58
2011. I think they were married for 12 years.

Scott Benner 1:02:01
You guys don't know how long you've been married? That's fantastic. We

Speaker 1 1:02:05
have three children and run a business. And

Scott Benner 1:02:09
I don't know what day it is, right?

Speaker 1 1:02:12
We got diabetes times two in this house. It's a busy place.

Scott Benner 1:02:15
This guy pops up in my Facebook group the other day. And he goes, as you know, and I'm like, Whoa, stop yourself. I don't know anything. I was like,

Speaker 1 1:02:22
Yeah, remember? Nothing. You could have told me yesterday. Running

Scott Benner 1:02:26
a thing larger than you can imagine. And I don't know. i My wife says things to me. Listen, I go to the grocery store. Get to the grocery store and text my wife and go Why am I here?

Speaker 1 1:02:40
Right. Well, Kevin does too. And he's not running this huge podcast. Oh,

Speaker 2 1:02:45
yeah, I do. Yeah, I've the grocery store. Trips are not are not the best i There's always like two or three kind of unicorn items that are on that list. And I'm having to call her like, where do we find this? Where is this?

Scott Benner 1:02:59
Yeah, that could be a boy thing. Maybe that's not this part of it for me. Exactly. But I leave my house going iced tea bread. Like I say it over and over. But I just learned about three years ago. I just tell him I just told my wife and I'm like, you want it? You texted me? You don't text? Me. You're not getting like that's, that's the best I can like I can hope for anymore. But yeah, like I I'm fascinated like 42,000 people in that group. And the guy starts talking to me, like I sleep next to him. And I'm like, Man, I don't know what you're talking about. You're sure you do. And I'm like, No, you remember it. I like everyone should be in my position for a day. And then they wouldn't say stuff like that to people anymore. They go you obviously don't know who the hell I am would be the answer. Because I've talked to 65 people since you and I, I don't know any of their names. I can't see their faces. It's virtual. It's hard to keep track of you know, so yeah. Anyway, you guys were really great. I appreciate you doing this very much. Yeah.

Speaker 1 1:03:58
I'm really excited. Your podcast has been awesome for us. We love listening. And it's helped me a ton. I mean, a ton. Yeah, I've learned a lot. I think I brought Kevin on to it pretty early. And I was like, You gotta listen to this guy. Yeah.

Speaker 2 1:04:12
And then yeah, for me, and for me when I listened to it was, you know, they're talking about things that I had already been doing for many years. And it was nice to know that there. There was this other path out there that, you know, people have discovered, you know, in terms of, like you say, being bold with insulin. I've

Scott Benner 1:04:32
heard that it was Yeah, I've heard that from people. They're like, I didn't know anyone else did it like this? Yeah. Yeah. It's really cool. Scott

Speaker 2 1:04:40
Scott, do you know if if there are endocrinologist out there that actually recommend people listen to your podcast? i

Scott Benner 1:04:47
That happens a lot. Yeah,

Unknown Speaker 1:04:49
I wish more would that would? Yeah, we're trying.

Scott Benner 1:04:52
I have an intake form. So when you come into the private Facebook group, it asks you like four quick questions, and one of them is Where did you hear about This, and I'm gonna say around 40% of people say from their doctors. Oh, really? Yeah. Wow, it's pretty. It's either from other support places, for my doctor on Reddit is a big one, which is fascinating. I've never been on Reddit before in my life, but apparently, thank thank you to the people on Reddit, they seem to like the podcast, or from a friend like that. That's it. I've had so many. So you know, it's funny. This is the time of year where I have to go back to the advertisers. And I'm like, are we doing this again next year? Like, you know, they're like, Yeah, you know, we kind of do that whole thing, that the business part of it, I find myself saying to people lately, this is crazy, because this is the ninth year of the podcast. But when you really look at it, the first four years, were bullshit, like in the grand scheme of things like don't get me wrong. In the first four years, this was the biggest diabetes podcast that existed, it was at some points, the only one that existed, there's been like, I think the numbers now in the mid 80s, people who have launched the type one podcast that have failed in since I've started mine in like the last nine years, there's a handful of them that are left, but as near as I can tell by looking at charts, they don't chart on any Apple chart whatsoever. I'm sure they're helping people and reaching people, but not on enough of a scale that you know, it reads out. And that's I'm not saying anything bad about them. I'm just saying that that's the situation. And still, as I look at the numbers, I think I realized this is in its infancy still. Yeah, those first four years, it took me four years to get three or four years to get to a million downloads, like total downloads. And I was like, Oh, my God, I have a million downloads. And now four years later, I have 15 million. Yeah, so amazing. Yeah. And so I really think it mean, this year should do 6 million last year did like four and a half. Even if it doesn't grow any more. If it stayed at 6 million a year, that would be insane. Those are indicators to me that of growth. And here are some other indicators of growth for me. I was in Oh, usually I say you won't know what this means. But Megan, well, I went to Walmart the other day, Megan. And my I was just we were around the house. If I'm being honest, the Phillies game was getting ready to start. And my wife said, Can you run out and get me iced tea real quick. And I was like, if I can get back here before the Phillies game starts, I'm happy to do this. So I left. I run into Wawa, which is a convenience store for the rest of you. And I go to the cooler I grabbed the gallon jug, and I'm walking to the to the register and I turn a corner and there's this like little girl standing in front of me. Like we kind of turn corners and we don't walk into each other. But we kind of came face to face. And she was only like, I don't know, nine. You know what I mean? She's little, and she's in her little soccer uniform. And her mom's standing behind her. And I just smiled at her because I felt like I might have startled her turning the corner. And I looked at the mom, I continue to smile and I kept going. And I have to admit, if I think back, the mom glanced down at my shirt. And I go get line. I'm doing self checkout. Mega knows I'm flying out of there. I'm proud of how fast I'm getting out of there. You know, I mean, I'm like, I can't wait to keep moving and go drive fast and turn my music up and do all our Northeast the things. Yeah, and I'm gonna definitely break a speed limit on the way home. It's gonna be fantastic. I look up and the lady and her kid are standing behind me. And she goes juicebox Oh, cool. Yeah, go. That's awesome. So I tried to be funny, which didn't go over well, cuz I think I didn't realize how like, excited she was. And I just I put my hand up that my waist and I went not in public. And I thought I was being like, obviously funny. And she goes, Oh, I'm sorry. And I'm like, oh, no, wait, I was good. I was like, no, no, it's okay. It's okay. I'm like, I'm Scott. Give me a second. Like, I'll finish up. And so we're chatting and stuff. That's insane. It's in the last six months. Yeah. In an altar at a gas station. In a Wawa? Yeah. Like, I think it's just starting. So it is interesting,

Speaker 2 1:08:59
Scott. I mean, I think the you're clearly to me, and this podcast is moving the needle, I I would be interested to see like, just on a on a health basis, like maybe you've done this already, you know, do a survey of of your subscribers, you know, what's your average glucose? What's your average a one C, it would be interesting to compare that to, you know, like, general population. And see see how different they are? I think that would be that would be very, very intriguing to look at. I bet you it would be, you know, much better than the Gen pop. Yeah, I did a survey

Scott Benner 1:09:39
last year of 1100. listeners. Oh, you did? Yeah. And it's not like I don't think a hospital would say that. I did it correctly. But we asked as many questions as we could think to ask and I had, I had a grad student from Johns Hopkins go over like a person who knew what they were doing. Oh, excellent. Yeah. And I would say that, who provides adds a satisfactory range of diabetes topics is one of the questions right addresses many of your unanswered questions. And given the choice between medical professionals, the podcast slash the Facebook group and other online printed materials, out of an average of six medical professionals got 2.9 online materials 2.5. And the podcasts was 5.6. Out of six Yeah, it just and now these are these are, you know, someone would point out well, yeah, those are the people who are listening to the podcast, I would point out well, if more people listen to the podcast, then more people would answer that way. Right? You know, so it's there. It's everything. It's the things you need to know in a conversational way. It's learning without knowing you're learning. It's hearing something that makes you go, Oh, I didn't think of that. You know, like, those are the things that can't happen in a doctor's office, the things that can happen in a doctor's office don't happen in a doctor's office. So these other things are, they're never going to find a way to do that.

Speaker 2 1:10:55
Right, exactly. And just the concept of looping Scott, we would have never known now, of course, you could do do a DIY loop system. But for this podcast, endocrinologist, I'm not aware of any that suggests looping or would even mention it. And that's an actual option that that we need to look at for Lily going into school next year, we probably going to need it if Omni pod is unable to, you know, get a remote Bolus option going and get it approved. So yeah, yeah, that's a great example. Right there. Yeah,

Scott Benner 1:11:31
the scope is the important part. Right. So to take you back years ago, I knew my blog helped people. And when I started a podcast, I saw that the podcast helped people at a greater rate. And then I saw as it got more people got back as I reached more people, and then I realized that scaling was incredibly important if you're going to continue to reach people. And so I probably have, I have enough of like a small business owners mindset. And aggressively, you know, I like to win. I don't know how another way to put that exactly. And so like, you put those things together, along with the information. And I was like, if I reach more people, more people be helped. And I kind of just obsessively do that over and over again. And so what the podcast has done is it has a massive reach that nothing else in the diabetes space touches. Like they like people try companies try, they've all given up, they can't do it. Like look at what the companies do for marketing. Now. They just do influencer stuff. Yeah. Right. They can't create their own content draw people in, they know it. And I don't just mean one company, all of them. So they go to influencers. And by the way, those influencers burnout so quickly, they're they're shooting stars, you know, like for six months, you're like, Oh, I love this girl on Instagram. And then we're she now you don't know, it's over. You don't I mean, like, so building, size and scope. And then sustainability was my was my next step. Like I was like this has to, it has to be as valuable today as it was six years ago, that I figured out like, I'll use an example, I just pulled up in front of you, you want really great information about loop, loop and learn has a YouTube channel, the information on there is really great. But, you know, their best video has, I don't know, 1000 2000 views. And that's not a reflection on them. Because, again, it fantastic information. It's a reflection on how people want their information given to them. Yep, you know, I heard somebody say, if I was watching a TV show, or where I heard somebody say recently, you know, you can blame people. And you can blame America or companies all you want, you know, because McDonald's sells french fries to people. But I guarantee you if McDonald's sold kale salads, they'd be out of business. And you know, like, at some point, you have to say, this is what people want. This is how they want it. And what I did was I, I took diabetes information and put it inside of a format about how people like to be entertained. And just mix them together. And that's a thing that still no one will do. Like they won't they want to be very, like uptight and buttoned up if they're going to talk about diabetes. And I maintain over and over again, if that's what you're going to do. No one's going to listen, man, it's King boring. And, and I don't it doesn't matter that it's going to save your life. That's not how people's brains work. Again, they need to kale salad, if that's how everybody's brains work. It's not Yeah, so I just said, Why am I fighting the nature of people? I'm going to make a podcast that I think is entertaining. And instead of talking about movies, or whatever else, the hell else people talk about in podcasts, but uh, talk to people left diabetes, and then the stuff will come out organically. And there you go. It's not a big secret. Anyone could rip me off. Go ahead and try like, you know, like it just nobody will do it. So yeah, anyway, I'm glad you guys found me. Thank you. It's

Unknown Speaker 1:14:55
helped. It has helped us

Speaker 1 1:14:58
out to us anytime. There's some thing we're on or we run into issue, I go straight to your Facebook group and I search it because chances are someone has done it, someone has got it, and I'll search it. And I am so anti Facebook, because I feel like it's doomsday and everyone puts the worst up there. And you know, in the beginning, I promised I wouldn't go on all these groups. But you know, the juicebox Facebook group is real. It's been great. I think it's a great community. I mean, I'm sure for you have one or two people on there. So great people.

Scott Benner 1:15:29
But for the most part, not many, and you just make those people go away. And that the first thought I try if they don't want to play ball, and by play ball, I mean, be nice to people, then they're gone. Yeah. And you know, like, and I did the same thing with the Facebook group that I did with the podcast, I was like, how do people like to talk to each other? Like, why do we just accept that this is what it means if you're on Facebook, everybody's going to be in short, and all that stuff like that doesn't have to be that way. So I set a standard. And I was like, This is how we're going to treat each other. Listen, last night. There's this guy in the Facebook group, he's given me trouble a couple of times. He gets upset when people I don't know, if he gets upset sometimes. And when he tries to make his point. He's a little militaristic about it. And it makes people It makes people upset it see it. So I one time said to him, hey, look, you can't talk like that to people, like chill out, you know? And he said, Oh, I'm so sorry. I'm so sorry. And then a month later, he did it again. And I'm like, so I suspended his account. And then I sit down at my computer last night, and I've got a message from the guy. I'm like, listen, we're not 15 Don't message me about your problems. I was like, be nice, stay in the group or leave? I don't give it like, like, like, it's you know, that's it, you know, and I don't know what it'll do. And honestly, I don't care. So like, at some point, it's the bigger picture. You're helping 42,000 people, if three people want to be idiots, they gotta go like that. Yeah, that's

Speaker 2 1:16:54
also everyone's individual situations with diabetes are going to be different. Yeah, we talked about my situation. And just, you know, for various reasons, you know, there, there are things that you can control. But I do believe there are variables that body composition and chemistry and those sorts of things that aren't, they're also going to affect it. And you know, it's not always a one size fits all, no,

Scott Benner 1:17:19
and twins, there's enough core information that is standard from person to person, that if you have that bit, then you can figure out the rest later. But if you start with the assumption that this is all just chaos, then you're never going to figure anything out. Because you chase ghosts all over the place. When you see things happen. Yeah, it's Listen, I don't want to say I got it figured out. But I figured it out. And so like, you know, and now it's just a matter of just having these conversations over and over again, and letting people listen into them. And

Speaker 2 1:17:49
I think what Megan just said, too, about just kind of the there are sort of places where you can go, you know, there's, there's other corners of Facebook and Instagram, you know, that might have diabetes information. But with social media, I think one of the one of the trappings can be kind of, you're falling into kind of the, you know, a victim mentality with the, you know, I, I would say, again, this is where I go back to kind of being blessed that that I was diagnosed back in the early 80s When this stuff didn't exist. But you know, at no point, I've never had had a time where I've sat and thought, you know, what, why me and why do I have this? And of course they were because, you know, honestly, there's there's a lot of other crap out there. That's way worse than than this.

Scott Benner 1:18:42
You must like listening to Arden when she talks about diabetes, because she's just like, she said something last time she was on that really resonated with people. Yeah, I said, Hey, you know, we're sending you off to college on Iaps. We've only been using it for like 10 days, we don't really know what we're doing. Because it's just turning some buttons and knobs. I'll be fine. And then I was like, Oh my gosh, yeah.

Speaker 1 1:19:03
Helps me because I am like the why me? Why my kid? Why is this happening? And when Arden comes on, it's so awesome to hear. Because that could be Willie in 15 years, or whatever, it's fine. It's just part of whom I

Scott Benner 1:19:16
would help you to know. I think that she got into her car at 11am one day and drove 700 miles by herself to Georgia. Crazy with what we wrote learned later was COVID symptoms. Oh wow. So cheap. So she drove she basically kicked COVID driving south like shivers and shakes the hot like that whole thing and her blood sugar she got there like absolutely fine. And the people that I saw respond back to that little statement if I got just some knobs, like I'll figure it out like buttons, I'll push and it'll be fine. People were like, oh my god, like why am I so worried if this freaking kid is just like yeah, whatever.

Speaker 1 1:19:58
This Yeah. Yeah, yeah, and I pray I pray that Lily is like that one day and I, you know, try to be positive for her and not let her see any of my anxiety surrounding it because that's how I want her to be. Yeah, no big deal.

Speaker 2 1:20:12
It does help her to, to see me with my AMI pod on and mighty sit and wait, you know we would. Yeah, we kind of talked to her about that and you know, just just like daddy's no big deal, that sort of thing that that does help her. I mean, there's been a few times where she'll she's sort of asked, you know how, you know, I don't know what, what word she used magnet to the effect of forever. Yeah, but she sort of moves on quickly and doesn't really yeah, she's just

Scott Benner 1:20:46
the kid. Just go. Yeah, you have to wear it forever. Okay. Yeah.

Speaker 1 1:20:51
I was like, she asked that actually the other day. Do I have to wear this thing forever? And I was like, oh, Lily, don't think about that right now.

Scott Benner 1:20:57
It's gonna be fine. Well, Kevin, I'll tell you what, Lily having diabetes is going to help you. And you don't even know it yet. Oh, yeah. I

Speaker 2 1:21:05
Scott I did not have I never moved to Omni pod until she did. I was just I was always against having a device on me because I, when I was back at it, I played a lot of sports and just thought it would be an impediment and realize that it wasn't when he when she started. And it's it's helped me greatly just just that one thing is

Scott Benner 1:21:25
not unlike most other things in the world that you're scared of before you do them that after you hear them. You're like, oh, this was fine. So yes, yeah, yes. I agree. I really do. Alright, well, you guys are terrific. I appreciate the conversation very much. Yeah. Hold on for one second for me. I'm gonna say goodbye privately. And we're done. So thank you very much. Thank you, Scott. My pleasure.

Let's get rid of that Fu. There should be no fear of missing out on Omni pod because you have the opportunity right now to use my link at Omni pod.com/juice box to learn more about Omni pod five, four to get started right now. Omni pod.com/juice box, please use my link. There's links in the show notes and links at Juicebox Podcast the Omni pod ever since and all of the sponsors. I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast. Learn more about its implantable sensor, smart transmitter and a terrific mobile application at ever since cgm.com/juicebox. Get the only implantable sensor for long term wear get ever since. If you're living with type one diabetes, the afterdark collection from the Juicebox Podcast is the only place to hear the stories that no one else talks about. From drugs to depression, self harm, trauma, addiction, and so much more. Go to juicebox podcast.com up in the menu and click on after dark. There you'll see a full list of all of the after dark episodes. I know that Facebook has a bad reputation. But please give the private Facebook group for the Juicebox Podcast. A healthy once over Juicebox Podcast type one diabetes. The group now has 47,000 members in it, it gets 150 new members a day. It is completely free. And at the very least you can watch other people talk about diabetes, and everybody is welcome type one type two gestational loved ones, everyone is welcome. Go up into the feature tab of the private Facebook group. And there you'll see lists upon lists of all of the management series that are available to you for free in the Juicebox Podcast, becoming a member of that group. I really think it will help you it will at least give you a community. You'll be able to kind of lurk around see what people are talking about. Pick up some tips and tricks. Maybe you can ask a question or offer some help Juicebox Podcast type one diabetes on Facebook. Thank you so much for listening. I'll be back 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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