#1583 Kaiser Rolled

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‘Clara,’ a 45-year-old nurse with LADA, shares her fight for a proper diagnosis after bad info from Kaiser—and how growing up with a T1D sister shaped her journey.

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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
Welcome back, friends. You are listening to the Juicebox podcast.

Speaker 1 0:13
Hi, I'd like to remain anonymous, but we can pick a name, Sue Clara.

Scott Benner 0:21
My grand rounds series was designed by listeners to tell doctors what they need, and it also helps you to understand what to ask for. There's a mental wellness series that addresses the emotional side of diabetes and practical ways to stay balanced. And when we talk about GLP medications, well we'll break down what they are, how they may help you, and if they fit into your diabetes management plan. What do these three things have in common? They're all available at Juicebox podcast.com, up in the menu. I know it can be hard to find these things in a podcast app, so we've collected them all for you at Juicebox podcast.com. 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. When you place your first order for ag one, next gen, with my link, you'll also get a free bottle of Ag, d3, k2, a welcome kit and five of the upgraded travel packs. And right now, with every new subscription, you'll get a freaks of nature Sun stick. That's an SPF, 50 Sun stick. With your order, use my link. Drink, AG, one.com/juicebox, summertime is right around the corner, and Omnipod five is the only tube free automated insulin delivery system in the United States, because it's tube free, it's also waterproof, and it goes wherever you go. Learn more at my link, omnipod.com/juicebox That's right. Omnipod is sponsoring this episode of the podcast, and at my link, you can get a free starter kit. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox

Unknown Speaker 2:01
you this episode

Scott Benner 2:03
of The Juicebox podcast is sponsored by us. Med, us. Med.com/juice, box, or call 888-721-1514, get your supplies the same way we do from us. Med, Hi, I'd like to remain anonymous, but we can pick a name to Clara. Clara, hey, Clara, how are you I'm good. Scott, how are you doing good? Do you think you'll remember to like respond to that if I call you Clara, hopefully we're gonna find out. It says, By the way, it's whimsical and sweet with an old soul charm. Does that fit you at all? Absolutely awesome. Like, you're like, I'm not gonna say, if it doesn't, that's not really me. I'm kind of a horror. Claire, what do you do for a living? I'm a nurse, okay? And you have type one diabetes yourself. I do. I have Lada about how long ago were you diagnosed?

Speaker 1 2:59
In 2022 is when my first a 1c, was high.

Scott Benner 3:03
Okay, how old are you now? 45 Okay, tell me why we're not using your real name,

Speaker 1 3:09
because I'm a nurse at a hospital, and some of the things I'm going to talk about are kind of closely related to that hospital, and I don't want to get in trouble at work. Okay,

Scott Benner 3:19
did I bring you on to do like a cold drink? No, you just, this is just the vibe of your story. You know it?

Speaker 1 3:26
Yeah, there's just a few things that I just don't want to be traceable to me. I

Scott Benner 3:32
understand, at least where you can go. No, that I I'm listening to it too, but it doesn't sound like me, sorry.

Speaker 1 3:37
Sounds like Clara. She works in a different unit. I'm

Scott Benner 3:41
hearing Clara, and my name is different than that, so that's definitely not me. I got you Okay, well, we will do that for sure. How long have you been a nurse? About 13 years. 13 years. So is it fair to say that you saw your diabetes coming?

Speaker 1 3:56
Kind of, yeah, it was. So the first time it kind of showed up was in 2015 when I was pregnant, and they screened me for gestational diabetes, and I failed that one hour glucose challenge horribly. And I remember the doctor telling me, You're going to have gestational diabetes, and I was so mad at her. I was like, How dare you say this? Like you don't know, but at the same time, I knew, so we didn't talk about yet. But my sister has type one diabetes since she was four. She's two years older than me, so I grew up with type one being everywhere in my life. But that was a long time ago, and in listening to podcasts, you know, you talk about how the management was different in the 80s and 90s. It was a little bit less your face, you know, like there wasn't CGM, sir. It was like, give a shot, check a blood sugar. Give a shot, check a blood sugar. So

Scott Benner 4:55
yeah, and not think about it really, in between, unless you got dizzy or sweaty, right?

Speaker 1 4:59
Yeah. Like it definitely it's like, a weird presence in my life, but at the same time, like, I don't feel like it impacted our lives that much. I like, I look back on it and think, Gosh, my mom really, I have a lot of respect for my mom. Handled

Scott Benner 5:15
it. Do you think she handled it well, or do you think she just didn't know the depth of the issue because of the

Speaker 1 5:21
time, you know, I don't, you know, I don't know. And I my sister and I have talked a lot recently about it, and I know my sister has some gripes about my mom's kind of lack of involvement, like later in her teen years, and, like, her early 20s, I think she did the best with what she could. She definitely wasn't negligent. But, you know, the tools were just kind of what they were it was definitely something we thought about. I remember, you know, we had very healthy dinner, very well rounded, always a protein, a vegetable, you know, like she took care of all that we didn't, you know, my sister ate really well. I mean, a lot of it was kind of diet, like, focused in terms of that. Like, I jokingly tell people a lot, like, when I was a teenager, one of my big rebellions was I ordered a regular soda at a restaurant, and I remember you people, yeah, yeah. And my mom looked at me, and I was like, Yeah, that's right, Pepsi. And she was like, it's happening, yeah, yeah. And she didn't say anything. I also remember as a child knowing that my sister was diagnosed by it, she had to pee and drank a lot, and one day, I decided to see if my mom would notice if I drank a lot and peed a lot, and she didn't notice at all. But I think she probably knew what I was doing. So really, I don't know,

Scott Benner 6:33
without speaking for her broadly, what is your sister's gripe with your mom?

Speaker 1 6:37
She sort of, I have sort of the same gripe with my mom that, like, as we got a little older, she really kind of checked out a

Scott Benner 6:43
little bit, like, don't get pregnant, see ya. Yeah. I mean, she was a really

Speaker 1 6:47
great mom. Like, I That is my feeling. My mom was a great mom, but, like, we got to be later, teenagers and 18, and she was like, I'm done. I did my job. Oh and shit. It's not like she it's not like she wouldn't be there for us, but she was not, like, let me keep day to day. Yeah. I mean, it's also, I have an interesting perspective too, because I grew up with type one so close around me, but I know how, like, it doesn't affect you, unless it affects you, because, like, I was around it, but like, even with it being in my house, around me, I knew very little about what was going on and was sort of not affected. So, like, now, as an adult, having it happen to me, I'm like, I know that people just don't really care, like, what's happening to me, because

Scott Benner 7:31
in my experience, that this does not put up a lot of red flags for people. Did you not feel ignored because your sister got more attention or anything?

Speaker 1 7:39
No, I didn't. Okay. My sister had this challenge and that I didn't like, there was definitely like it was kind of swirling in the background that,

Scott Benner 7:48
like, did you feel like your mom favored one of you over the other? No,

Speaker 1 7:52
she didn't. I do feel like it was even I knew that she put a lot of effort into that with my sister, yeah, but I didn't feel neglected. No, it never occurred to me that I could get type one like. It just kind of never, no

Scott Benner 8:09
one ever looked at you funny or tested your blood sugar once when you were younger, or anything like that.

Speaker 1 8:14
Well, I mean, I guess when I was younger, I think I felt like I made it, you know, like I got like, I didn't get it like, so also, one of the other things my parents did offer to, like, do some kind of screening. I don't remember what, back when I was, like, 18, and I said, No, I don't want to be screened. If it happens, it happens, and I don't want to know, but I think at that time, there was nothing they would have been able to do, like, there was no treatment. It would have just been like, yeah, I guess at 18, you know, I'm also 18, and maybe not making the best decisions. So, like a lot of times, I hope nobody takes this wrong way. When I see people, you know, saying they ask their kids if they want to be screened, I think, oh, gosh, I don't know that they can really make that decision. Yeah? Because even at 18, I was like, No, I don't want to know. Yeah, I die this way. Fine. I want to eat. So I want to eat, what I want to eat, you know, like, which I don't feel like now, you know, like,

Scott Benner 9:04
let me say this to you. I used to say on the podcast a lot. I must have said it so many times. I just, I consciously don't say it anymore. But I don't know, a lot of decisions I would let a 10 year old, a 12 year old, an 18 year old, make that was around health, yeah. Like, what a weird thing. Like, you know, what do you think? Well, Mom, I'm 11, but let me tell you what I think. Like, yeah, you know, like, there's a big push at one point in the diabetes community that I don't see as much anymore, which is, like, you know, it's body autonomy. Like, well, they don't want to wear a CGM. They don't have to because their body and I'm like, okay, except she's six, and, like, you know what I mean? Like, yeah, she doesn't know. The other side of all this, like, a six year old is not making a full decision when you ask them if they want to wear a CGM. Like, of course, they don't. They don't want to do that. Like, yeah, you know, an 18 year old, do you want to be screened for type one diabetes? No, no, thanks. I'm good,

Speaker 1 9:54
yeah. I'm invincible, you know. Like, I don't want to know. Like, it's not going to happen to me, Mom,

Scott Benner 9:58
listen, I don't know if you. Otherwise, just not. But a speed ball didn't kill me last weekend, so I don't think diabetes is going to Okay. You even know what that is. Of course, I know what that is, all right, just checking you, if you're just agreeing to something, you're like, Oh, that sounded fun.

Speaker 1 10:13
I have not, but I do know what that is, yeah, but yeah. But when that's your

Scott Benner 10:17
feeling like, oh, this won't hurt me. Like, I don't have to use a condom, I don't need to do this. I don't need to do like, what do like, What do you mean? Like, don't talk to the guy who's driving the motorcycle. I can talk to him like, you know, you don't. None of that, you know, they

Speaker 1 10:29
didn't. There wasn't to put us a mat back then. Like, there wasn't any treatment. I don't think so. Like, in that space, like, I would have just known, but still, I think there would have been merit to, like, knowing

Scott Benner 10:42
somebody would have checked your blood sugar once in a while. Probably, yeah,

Speaker 1 10:46
and that leads me kind of interestingly to what I wrote you about, like, was, you know, kind of my struggle with my healthcare team that I had last year was with Kaiser, but I don't think it's like, exclusive to Kaiser. So she tested me for my a 1c she just threw an A 1c and I was doing other labs. She's just like, she said, I'm gonna throw an A 1c in. I get the results back at 6.2 and I was like, Oh my God. Like, I'm freaking out. Yeah. And then I wait a couple days, she never says anything to me. I email her back and say, hey, you know what about this a 1c and she emails me back, an A, 1c is a measure of blood glucose over a three month period. I'm like, Yeah, thanks, but I know that. Like, what about it? Like, what? She was like, Yeah, well, you know

Scott Benner 11:33
you should, don't know, were you just trying to make money running my a, 1c what's going on right now? Yeah. And

Speaker 1 11:38
I was like, it pissed me off so much because I was, like, you threw this lab in, and now it's abnormal, and now you're not responding for like, a week about it. And like, I guess to them, it's like, you know, it's not urgent, but like, you know, to me, it is right. And so I'm like, so you know, what's the plan like? I know there's not, like, going to be a huge plan, but I just, I don't know. I'm a nurse. Like, tell me what the plan is like. And she's like, I don't know. Here's a link to some how to eat healthy and how to exercise. And I'm like, okay, like, How often would you check your a 1c she's like, well, we can't do it any more often than three months. I'm like, I'm not asking, like, how the lab works. I'm saying, What is your plan as a doctor? And they're just like, I don't she was just literally like, I don't know, I guess we would check it in a year. And I'm like, I don't know. There was just something in me that knew that that was not a good plan.

Scott Benner 12:28
Is this person still your doctor? No, no, okay, yeah, no. It's awesome. Like, oh, I ran this test and I got back, I got back something actionable, but we're not going to do anything with

Speaker 1 12:38
it. Yeah, it really made me mad. And so I said, you know, I think I'd like to see Endo, because, you know, my sister's type one and I have a history of gestational diabetes, and I'm real. I'd really like to, like, be proactive about this.

Scott Benner 12:51
So worried about what you're gonna say right now, I just have this. I just have to be honest with you, like, once you tell me I'm 6.2 and my my sister has type one diabetes, this should shift this doctor. But what happened? 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/juicebox, or call 888-721-1514, 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 in Dexcom 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 g7 they accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with a better business bureau at us med.com/juicebox, or just call them at 888-721-1514, you get started right now, and you'll be getting your supplies the same way we do. Today's episode is brought to you by Omnipod. It might sound crazy to say, but Summertime is right around the corner. That means more swimming, sports activities, vacations, and you know what's a great feeling, being able to stay connected to automated insulin delivery while doing it all. Omnipod five is the only tube free automated insulin delivery system in the US, and because it's tube free and waterproof, it goes everywhere you do, in the pool, in the ocean or on the soccer field, unlike traditional insulin pumps. You never have to disconnect from Omnipod five for daily activities, which means you never have to take a break from automated insulin delivery ready to go tube free. Request your free Omnipod five Starter Kit today at omnipod.com/juicebox Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox type that link into your browser, or go to Juicebox podcast.com and click on the image of Omnipod right at the bottom. There's also a link right in the show notes of your podcast player. This

Speaker 1 15:33
doctor did not care at all. This doctor was like, Endo. She said, No, this is actually what she did, which really pissed me off. She said, Well, what would you like to talk to endo about so that I can prepare them for your questions? And I was kind of like, that's weird, but I sent an email, just a brief email, like, I have this question, I have this question, I have this question. And what she did was she just forwarded them that email, and they forwarded her response back, so I never got to talk to Endo. They just talk to each other.

Scott Benner 16:01
You know, it's not even the Endo, you know, it's somebody just answering the email. Okay,

Speaker 1 16:05
fast forward, I did end up meeting this Endo, like two years later, and even if I had gotten to this Endo, it wouldn't have helped me. So, oh, anyway, but so

Scott Benner 16:16
say birds the feather flock together. Situation,

Speaker 1 16:19
I they just for anyway, I don't know, they

Scott Benner 16:23
look at you. You won't say anything mean, because you work in the industry. But these are two people that don't, they don't do a good job. Is that, right? Yeah.

Speaker 1 16:30
They were just very, like, lazy about it, and just, like, minimum, just bare minimum. They were like, oh yeah. Just it was, it felt very much like, oh, just another pre diabetic person, which I guess, like, that's how they felt, for all their laziness, they would kind of do what I say, like, as a nurse, I am like, used to being like, not that they listen to me, but I'm used to being like, this is, this is what I want like, okay? And they're like, they either say yes or no. So she said, Well, I'll put a standing order in for an A, 1c every three months, because that was the most you could do it, you know. So I ended up doing a one sees every three months, and they just started. So the first time, it was 6.2 the first time, then I, like, had, like, an extreme diet, like, I was, like, in my mind, I was like, I'm gonna reverse this thing. This is when I didn't have any idea about type, but it could be type one or stages of type one. So I thought, you know, people reverse this. So I, like, was super, super dedicated to this. And then my a 1c after three months was 6.0 and I knew that that was not good. I was like,

Scott Benner 17:30
Oh, but I only ate one piece of chicken for the last three months. Yeah, yeah.

Speaker 1 17:34
I was like, that's, that's a bad sign. Like, if it had gone to like, 5.2 I probably would have been like, I get it, yeah? Like, I reversed this, and I put, you know, whatever. But I was like, oh, man, that barely moved. Not good, yeah. I talked to so I started talking to my sister a lot. She's been so supportive, and she's so patient with me. She just very gently prompted me to ask for the antibody labs, you know, like, yeah, it's hard to tell someone what to do with their health and their doctors, you know. And she never felt like she was forcing me or telling me what to do. She just kind of prompted me along. So I asked for antibody test. She asked the Endo. The endo told her how to do that. I could tell via like, their email messages. And the email message from the endo was like, you can do a gad antibody test, and if it's negative, then she's not Lada. Like, basically just like, you can do that. So she's not, like, you can

Scott Benner 18:31
tell her. Everybody thinks you're not gonna have Lada. That's what they're Yeah,

Speaker 1 18:35
yeah. And this was, like, the first of a long list of, like, came back positive. And I was like, Yeah, told you. But then it's like, Damn, that's actually not good. Like, I won, but like, I really,

Scott Benner 18:48
yeah, I told you guys you weren't paying enough. Oh, I have diabetes,

Speaker 1 18:52
yeah. But then the really screwed up thing is that even once they got that result, they didn't care about it at all. And they were just like, okay, yes, you're Latta anyway. So continue on with monitoring your diet and exercise. And I was like, okay, and I would I was trying, like, this is the other part I feel strongly about. It's like I was trying my hardest to advocate for myself. I was doing all this research. I'm reading, I'm looking things up. I'm like, trying to educate myself, and I'm, like, getting nowhere with them, and I'm getting nowhere with anything. I'm a nurse, my sister's type one, she's helping me. I asked for this test. I got it, like, and still it was just kind of nothing, which, at that point, I guess, like, it's hard, because with Lada, it's it is this, like, weird waiting game where you're like, kind of in between, can I tell you how

Scott Benner 19:43
insulting I find the idea of advocating for yourself? Yeah, listen, I think you should. And I would tell anybody listening, you have to, and I would explain why, but you should not have to go to a doctor and beg them to do their job, because that's. What advocating means. It means keep talking till someone breaks down and does the thing you need.

Speaker 1 20:07
Yeah, I think the other part is like, I was so used to having nothing wrong, which part of me feels extremely like privileged to, like, say, like, Sure, this hit me really hard because I hadn't really dealt with anything. So I recognize that, and that feels like my sister and I have talked about this a lot too, like I just can't even imagine as a kid, like when she went through and I and like I was there and I didn't understand it. You know what I

Scott Benner 20:31
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Speaker 1 21:43
and, like, we actually had a really nice conversation a lot of times about like that, I said that to her, and she said, I feel so bad. I wish this had never happened to you. Like, I always wish this never happened to you. And and I feel bad that it has, and I don't even know how she could feel bad about it, you know,

Scott Benner 21:58
yeah, because she had it first, and it feels like it's her thing, and so now you have her thing, and she doesn't want you to feel the way she want to share it with me, yeah, yeah, even though that's unreasonable, big picture. But I understand, yeah, yeah.

Speaker 1 22:10
And I think she wouldn't, you know, obviously she doesn't think she's responsible for it. It's just I felt guilty that I I hadn't, like, checked in on her and, like, it was a weird feeling of like, wow, I really never, like, asked you about this, like, I always just thought you had this under control, and that was a thing that you had under control. And, like, I never checked in on you, and I never was like, how is this going? And in a way, I like that, like, that's not how I think of her, even though I know she has diabetes. Like, it's not like my sister with diabetes. Like, number one thing, you know what I mean, it's not the number one thing that I think about with her. I see

Scott Benner 22:46
both sides of it. Like, on one hand, you're happy not to look at her and just think diabetes, and on the other hand, you're like, God, I didn't realize this is what you were going through. Or I yeah, I would have said something or, you know, because obviously this is a thing that needs support. Yeah,

Speaker 1 23:01
it's interesting. Like, this is like, a weird little segue, like, I work at a children's hospital, and there is a lot of thought about kids who are chronically ill or severely ill, especially in the hospital, and their siblings, and what does that do for their siblings? You know, you asked me early on about, like, did I feel ignored or something? I think it's interesting, like, kids are so adaptable. And I just want to say, like, to parents of kids with type one, I think you're raising kids that are, like, really empathic. My sister was so empathic and so helpful to me, and I think her having that growing up really does affect kids, and I don't think it always affects kids in a bad way. I think it can really make them thoughtful. And, yeah, I mean, it can have different effects. But, you know, like, I just now I'm even so, like, thankful, and I'm impressed of how my sister really helped me through this, and she's been really, you know, even as adults. But like, I think that that's something she's acutely aware of, like, growing up with a chronic disease like that, I feel like I wasn't and, like, was kind of blind about,

Scott Benner 24:07
have you tried going back and explaining this to your parents or no, or is it too late? Are they older?

Speaker 1 24:14
I mean, they are older. I've talked to them. We've talked about it a lot, and I know even, like, before this was happening to me, I talked to my mom about when I when I had a four year old, when I had my four year old, I thought, the thought occurred to me a few times of I have no idea how my mom, I can't even get my kid to sit down in a chair. And how was she giving my sister shots like and checking her blood sugar like, as a parent, seems really hard. I

Scott Benner 24:41
got a regular kid over here with no stuff, and I'm banging my head against the wall here, and your mom had going on what she had going on with your sister. How does that happen? And then how do you regulate that later as an adult, when you think like, oh, I don't think my mom did enough. It's a weird little conundrum. To work your way through.

Speaker 1 25:00
Yeah, yeah. It's hard being a parent's hard. And anyway, go ahead,

Scott Benner 25:05
yeah. I was gonna say, what's the answer? Is the answer, your mom could have done more and she should have, or is the answer that those were the times, and that's all it was. Is that an excuse for not looking harder into it like and if you answer that way, are you telling me that you don't try hard enough with your kid, and that's why nobody answers that way. It's all very weird, you

Speaker 1 25:23
know what? I mean? Yeah, yeah. I think my sister's main complaint was, like, later as a teenager, and I do remember, like, her coming back from college and being like, I haven't checked my blood sugar in months, you know? And like, she definitely had some kind of of that typical late teen, early adult kind of burnout,

Scott Benner 25:41
like, I don't want to, I'll just leave that behind. Thing, do you know, if she was taking her insulin? Yeah, she was

Speaker 1 25:47
taking insulin. But I think she just was like, I feel this, you know, I feel high. I feel think she was going by, feels which, you know, yeah, wasn't, wasn't the best way. But I, you know, and she recognizes that now, and she's doing, been doing really great for a long time.

Scott Benner 26:05
That's awesome. Did she have trouble at that point? Like, is, is the question, like, How did my a 1c go up and nobody said anything to me?

Speaker 1 26:11
I don't think so. I think, I think she knew. And, you know, we've never really talked about specific a 1c is, I haven't, like, asked her, like, we talk currently about agencies, but I don't want to be like, what was your highest a, 1c Tell me about that dark place in your life. Like I was just

Scott Benner 26:27
wondering if maybe there was, like, something visible that your mom saw that she just, like, kind of turned a blind eye to. That's what I was wondering.

Speaker 1 26:35
My sister says, like she stopped making endo appointments for her and that she hadn't been to the endo in a really long time, and at some point, as a teenager, realized she had to make an endo visit for herself. And

Scott Benner 26:45
interesting, your mom get a little drinky when she got over, what happened?

Speaker 1 26:48
Like, I said, she kind of was like, I'm I'm done with you guys. Like, cancer done. And for me, I've had the same feeling about, like, some different stuff. I remember, like, similarly, like, being like, I haven't been to the dentist in a while. Like, I guess I should make my own dentist appointment. I was in high school, you know, and thinking, is this, is this normal? Like, should I, I mean, maybe I should I guess I can. Like, oh, it's like, I guess I will. And then for me, for most of my life, I've kind of looked back on that and reflected that, like, I don't know that it was intentional, but it did make me very independent. It was okay for me, but I wasn't managing a chronic disease, so it's different a

Scott Benner 27:25
little bit. I have a family that pops into my mind now, and they're lovely people, and I actually absolutely adore them. However, if you ask them about their responsibility for their children, it is place to live, healthcare, food till you're 18, and then good luck. Yeah, that's what they think. And I don't know if that's generational or, like, familial, like, maybe that's just how your mom was raised, and she's just gonna raise you the way she she was raised. Like, who knows. But it is weird, once the medical thing gets involved, that to just drop the ball, like, so, so much like, like, you're not dropping a ball. You're dropping like a lead weight. You're like, oh, you know, how did your mom never once think, Oh, my God, my daughter hasn't been to the end, though, right? That's a strange one to me. I'm so sorry. Do you think she had some sort of a little breakdown, or anything like that happen? No, no, wow. You think she's like, Ed, what are you trying to tell

Speaker 1 28:19
No, I don't, I don't, I really don't I my mom did a lot for us. We had a really nice childhood. So it's not that she was, like neglectful in general. I think she's human. She just saw this at the end of her responsibility was here. And maybe she doesn't necessarily do those things for herself either. You know what I mean, like, oh, like, I think it's just kind

Scott Benner 28:43
of, oh yeah. The state says I gotta take care of this kid, but now it's older, so like, No,

Speaker 1 28:48
I just think maybe she's not as on top of dentist appointments as, like, she should be, or, you know, or doctor's appointments. Like, I just think maybe that's not

Scott Benner 28:56
her focus. Is it like, possible that your mom didn't see the diabetes as all that intricate and important, because it was so there were no CGM that she was made. Your sister was probably just doing, like, regular name page at some point, right?

Speaker 1 29:11
Yeah, she was doing regular and mph. But, you know, I will say to get my mom critics. I'm really not trying to No, yeah, when my sister was diagnosed, at that time, they were doing pork, beef or pork insulin in our area, and she took my sister to the big city, hours away, found pediatric endocrinologist, demanded to use human insulin like she really advocated for my sister, and she also really advocated for my sister in school.

Scott Benner 29:37
I take your point. No, I don't think she was like, negligent or anything like that. It's how the whole thing occurred to her so

Speaker 1 29:44
but I do think it back then there was this sort of like I hear on the podcast, at least watch, and it kind of resonates with my experience as a kid that there was like, this is your disease, and you take responsibility. Like there was this handing off of versus. Responsibility that was sort of considered the what was supposed to be done, I think, yeah, in the 80s and 90s.

Scott Benner 30:05
Yeah, that was the end of it. Like we did our part. Now you do your part. You need to learn to manage. Yeah, this is your thing, and you're gonna have to do this your whole life. Isn't it funny that there's no like extension to that? So let me help you get set up, or give any questions or anything like that. It's just very, I mean, of that time, I guess, yeah, yeah, oh, geez. So, okay, so you're sorry, you're diagnosed. Yeah, let's get back to you. Yeah, vaccinated. God, you're diagnosed. It's lot of so is the onset very slow for you? How long does it take for you to get to the point where you are now? Or maybe you're not even there yet?

Speaker 1 30:40
Yeah, it was pretty slow until so like, the turning point for me, although I still, like, I still am not, like, fully insulin dependent. I use insulin to, like, optimize my a, 1c and like, optimize my blood sugar. But, like, my blood sugar grows up really high, but then it does come back down eventually, but it started to change. Was like, I think in beginning of 2024 I think it went over seven and even, and this is another point, like, I really, or I think when I was 6.5 maybe towards the end of 2023 the doctor was like, Well, you could start Metformin, but you don't have to. It's up to you. And I was like, Well, what, what should I do? Like, I was like, What should I do at this point, I was really not as engaged, like, it's hard for me to even think back on like, how I was thinking about it back then, like, I was just not as engaged with it, like I knew it was happening. I was aware it wasn't but it wasn't like, on my mind so daily. And she was like, Well, you know, Metformin has its side effects too, so, you know. And I was like, okay, I can, I think I can do this, like I haven't been perfect, like I haven't been absolutely perfect. I can be more perfect. So this was sort of my struggle, from, like my initial diagnosis in 2022 till, like, last fall, 2024 was I just, even though I knew it was autoimmune, even though I knew it was like, not my fault, I still was, like, struggling so hard to be perfect and like, going on Metformin, really felt like a failure. The whole thing felt like a failure, even when I had just facial diabetes. Gestational diabetes, I felt like a failure, yeah, and I thought I could be perfect. And when I was pregnant, I was not starving myself, but I was so intent on not going on insulin. I was like, I will not go on insulin. I only gained like, 12 pounds my pregnancy, and they were like, You need to gain weight. And I was like, you put me on a diet. Well, what? What do you mean? Like,

Scott Benner 32:47
why am I supposed? Why do you think? Like, why do you think that that's the response? Because you're, I mean, listen, just tell me a few years ago, you're, you're a full grown lady with, like, you know, kids of your own, everything like that. Like, what is that like, psychological pushback that you're having.

Speaker 1 33:03
I think, like, I feel it's strongly that, like, my my emotional response to it is like more than it should be like when it was first, when I was first got this diagnosis, I was like, and I still get really emotional talking about it. And like, as I get so emotional talking about it, I think, God, God. Like, why are you so emotional talking about this? Or think, you know, like, why does this? Like, other people have things happen and they just deal with it, like, what is your I think part of it must be, like, some kind of childhood psychology situation of like that. I didn't have anything wrong with me and like, Now something's wrong, I don't want there to be anything wrong. Yeah. Like, and I had this super strong desire to, like, fix it, stop it, you know, like, yeah, which I think most people obviously do. Like, you know, when something's wrong, you want to fix it, sure. I know because, like, my how emotional it's made me that, like, there's something under there. That's,

Scott Benner 34:00
can you not find it? Can you describe the emotion

Speaker 1 34:05
like it for a long time, I just couldn't even talk about it without crying, like I was just crying for because you were angry or hopeless or like it was just grief, like I felt a lot of grief around it. That's fair, you know. But yeah, and I and it kind of like was, like, that's okay. You can feel grief, but it like went on and on. And so even with Kaiser, I think, in 2024 so in 2024 my blood sugar started to go up. And when they gave me Metformin, and I didn't end up going on it, they the instructions were to check my blood sugar twice a week and make sure at the end of the day and make sure my blood sugar was going down below certain parameters, and it was and I wasn't checking my blood sugar more often. I know I definitely, like, I knew what the a one sees meant, but like, I I don't know. I didn't want to check my blood sugar and see it be high. So I was just doing what they told me, taking my meds, checking my a, 1c every three months. But then at some point in the late summer, I noticed my. Sugars were higher. Like, I would check it at the end of the day and it would be like, over 200

Scott Benner 35:03
and I'd be like, Oh, that's, yeah, that's higher. And

Speaker 1 35:08
then there's this one time when I had stopped eating a lot of things, but for one, for whatever reason, we my kids and I used to go get acai bowls. I hadn't had those because I was like, I can't have that anymore. But for some reason I had one. I was like, Oh, I can have this every once in a while. So I had one, and then I went home, and it had been like hours, and I checked my blood sugar, I it occurred to me, like, I should see how bad that is for me. My blood sugar was like 350 and I was like 350 I was really like, what is that? Yeah, well, I mean, I knew how it happened, but I it, and it was also hours later, and I was like, whoa. And so I called my sister, and was like, I looked this up on the internet. It says I should go the emergency room. And I don't think I should, right, or should I? I'm like, Am I like, what's happening? And she was like, Oh no, you don't need to go to the

Scott Benner 35:59
emergency room. No, sweetie, that's gonna happen now, yeah, yeah.

Speaker 1 36:03
She was like, yeah, that's okay. She's like, you could maybe go for a walk or something, drink a lot of water. And I was like, Okay. And so I did all those things. My blood sugar came back down, like, you know, in a couple hours to like, 100 but that was kind of the beginning of, like, get I really was changing. And then also, during that time, last summer, in like, summer of 2024 I started losing a lot of weight, which, again, was kind of confusing to me, because, like, they're telling you to go on a diet, watch what you eat, and you lose weight, and you kind of think, Oh, I'm doing it. It's happening. I'm doing what they told me to do. But to be, to be, like, specific, I know in the podcast, usually like ask specific. So I'm five eight in 2022 I weighed 140 pounds. The next year, I weighed 120 pounds, wow. And then this last fall, in 2024 I weighed 110

Scott Benner 36:58
pounds. I'm sorry, did you go from like, reasonably, like, curvy to thin?

Speaker 1 37:03
140 is like healthy? BMI, yeah, totally. Like healthy, normal weight to like thin people. And my co workers were saying, Hey, you look really great, which was annoying to me, because I was like, Yeah, I have a chronic illness now. It's great, sweet. And then the next year, it went from, Hey, you look good to Are you okay? Like, and my manager even pulled me to the side and said, you've lost a lot of weight. Is something going on with you, which honestly made me really angry at the time. There are bones sticking out of my body that I've never seen before. There's like, all my muscle I lost so much muscle mass. I lost, like, there's like, concave parts of my body that shouldn't be like, it hurts to sit down skeletal.

Scott Benner 37:45
It's not I hear. And I just had a walked into the post office, and the person that runs my post office horrified when they looked at me, and she goes, Hi, are you all right? And I went, Whoa, like, what? And then it took me a minute, because I've now I'm a couple years into having lost weight, yeah, and I just hadn't seen her in a long time, so my brain doesn't catch up right away. And then I go, Oh, you think I have cancer? And she goes, Do you? And I said, No. And she goes, Oh, thank God, because her husband had just recently gone through it. So she, I think she had, like, a real visceral reaction to it. You know what? I mean? Yeah, yeah, it's and by the way, my butt hurts too, if I sit down too much now too, I hear what you're saying,

Speaker 1 38:26
but Yeah, and like that really made me angry a lot, because it just felt like, very, it just felt, I think I felt really like, exposed, like people just kept saying things to me, like, and then I felt like this, need to explain, like, Why, which I didn't necessarily like, want to get into all the time. And so it was this, like, kind of frustrating. Like, spiral. It's a little bit better now, because people are just sort of used to the way I look now, like there's like, everyone has seen me, and there's no more like, Whoa, don't let me put

Scott Benner 38:53
words in your mouth, but, but I'm assuming that when you're when you get diabetes, you feel like you're not in control your body anymore, right? And now you lose the body that you thought you had, and then your weight changes like that. And I imagine now you're like, well, it didn't work the same way anymore. Now doesn't even look the same way. Does it feel like two different losses?

Speaker 1 39:11
I don't know if it feels like that, but it just it feels like I see myself and I I like it. Don't look well, I think I'm starting to look better, but like, I just, I don't, like, I don't recognize myself, yeah, sometimes.

Scott Benner 39:25
And do you think you've just needed insulin this entire time? Yeah?

Speaker 1 39:29
Yeah. I mean, it's interesting, because, like, lat is so interesting, or whatever you want to call it, like, the more I look into it, I've done like, a ridiculous and insane amount of research about it like the doctors can't even agree what they really think it is. I think there's also a lot of like variance in the diagnosis. And I think there's so much for the medical communities to learn about diabetes in general, like all like, all types, so I think they really don't know. Lot about it, like, there's lots of different ways to think about it that are not just type one, type two. There you did, I think you did a podcast with that doctor who talked about the five phenotypes that

Scott Benner 40:10
Dr Hamdy. I was just thinking that, like he was so insistent that there will be more distinctions between types of diabetes in the near future, right? So it's maybe a thing that they're working on behind the scenes,

Speaker 1 40:23
yeah? So it's interesting, because it's like, being Lada, you feel kind of like you don't fit in. Like, sometimes I don't feel like diabetic enough. Like, I don't have like, full, like, diabetes card,

Scott Benner 40:36
like, like, you're like, I like, they're like, you're not type one. You're a lot of that. Yeah, you don't know what it's like, you know, because you're still getting help, I don't get any help, like that vibe, like, yeah, and then, or just it because you have again, just another way to be different, though.

Speaker 1 40:52
Yeah. Anyway, the story with, like, the Endo, the old Endo, is crazy because I finally got referred to Endo. I went to my doctor, the primary I might I weigh 110 pounds. I'm like, something's wrong. Like, I feel like something's wrong. I don't feel well, like something is I've lost all this weight. And like, she was just my blood sugar is, like, going really high. And she's like, how high? She's like, it's fine if it goes over 200 sometimes. And I'm like, but it's not sometimes. It's all the time. Every time I eat, it goes over 200 and she's like, that's fine. Just just really, you need to stop worrying about it.

Scott Benner 41:25
Clara, I have to stop you for a second, because at this point, I'm going to ask you the question that everybody listening is asking. But you're a nurse, how do you not know if you were looking at another person having your experience? What would you have done? Well,

Speaker 1 41:41
I did what I did, what I did. I went in and I said, this is what's happening. Yeah. And she just kind of kept telling me it was fine. And I said, Well, it's not fine with me, right? I said, I'd like to get a CGM. My sister suggested that I got a CGM. And she said, Well, you can, but we're not paying for it. And I said, Okay, well, you're right for it, and I'll pay for it. And she did. And so then, like, with the CGM data, I had a follow up visit with her. My a 1c was eight that time, which, you know, to me, I hate that. That's, you know, feels awful, but like, I know it's not like as world, yeah, it's not like 12 or 16 or, you know, it's like, they still, they still just don't really care. They're like, yeah, that's bad, I guess. Well, they were like, so she basically told me that if I want a better blood sugars than, you know, 200 that I could keep watching my diet and restricting my food. I said, I feel like I'm restricting my food because I don't want my blood sugar to go so high. But I weigh 110 pounds, and so I feel really trapped, like I don't know what to do. And she was like, well, you can either not worry about it, or you can

Scott Benner 42:47
restrict your diet. Wait, and what kind of doctor, this is

Speaker 1 42:51
my primary. Okay. So then she said, I'm referring you to Endo. So then she refers me to Endo, and I have a video visit with her, and she starts a visit. Was like, hi, I heard you wanted to see me, which I feel like she would have been told that, like, you're a problem. There was this crazy lady who was so worried about her blood sugars being high, and, oh, my god, what is her problem? So she's like, so I heard you want to see me. She's like, you are a type two diabetic until you need insulin. My brain was like, I don't think that's right, like, and at that point, like, I had already had my lot of tests, you know, like, I've tested positive for Gad, and she was just, and I was like, okay, so she's like, here's your new prescription for this other DP, DPP, four, and this is our protocol. And I was just like, but, you know, my blood sugar is going up this high. Like, I'm I'm I'm eating, like, nothing, like, like, Right yeah. I'm like, well, like, right now, I had plain Greek yogurt has five grams of carbs. My blood sugar is 190 and she was like, This was after talking for like, a half an hour. And she was like, your blood sugar is what? And I was like, 190 she's like, and you had how many carbs? And I said, Five. And she was like,

Scott Benner 43:57
Oh, well, you need insulin. I was like, Awesome. Awesome. I'm gonna jump out a window now. Thanks, everybody. Yeah, yeah, great.

Speaker 1 44:07
Office visit. I started type two now I'm type one, I guess okay, because according to her, that's what the difference in type one and type two,

Scott Benner 44:13
which five carbs? Yeah, the difference is five carbs. Had you told me that you had 20 carbs, I would have said, that's okay. You have type two diabetes. But if you only had five, then you have type one. This is my medical My God. And by the way, we don't want to say where you're at, but metropolitan area, right? A place where you might expect that there's, like, modern

Speaker 1 44:32
medicine Gotcha. Yes, yeah. Anyway, so then, like, the other struggle I had with this endo was to veer off topic slightly to pediatrics. So my sister also said, you might want to have your kids screen for the antibodies. And so I asked the pediatrician about this the same year, a few months before this was happening, and I said, Hey, you know, I just got diagnosed with Lada, and I'm wondering if I can get my kids screen for the type one antibodies. And she was like, Well, why would we. Do that. I was like, Well, I think the idea is, because my sister talked to me like that, it would help, like, look out for the signs of DKA, so that they wouldn't crash into DKA, or, you know, prevent, like, a more serious illness. And she was like, that's just, she's like, I don't know why we would do that. It's such a simple diagnosis. You should

Scott Benner 45:18
have said, maybe want to come back and live through the last months and months of my life, because apparently nothing about it's simple,

Speaker 1 45:23
right? And I was like, I mean, the way, I'm not very confrontational. No, I

Scott Benner 45:28
can tell, because they're not here, and you're still being polite about it. So go ahead, yeah, I

Speaker 1 45:33
don't like confront them right then, but I like, left the office, Googled it, Googled it. And was like, That was obviously wrong. And luckily for her, luckily for me too, she emailed me right away and said I checked in with pediatric endocrinology, and they said, Yes, we should screen because there's this medication T sealed.

Scott Benner 45:52
Dear Claire, do you remember that definitive thing I said to you 45 minutes ago? I was wrong about that. At least she did that. Yeah, I know. I just said there was no reason to do this, but I did check and they're like, yes, is that what pisses you off? Because it's what pisses me off. I'm getting angry for you. Oh yeah, I was very angry that she would so definitively say something that she did not know the answer to. She

Speaker 1 46:12
also really made me feel like an idiot, yeah, like she really made me feel stupid, like she went out of her way to really make me Phil,

Scott Benner 46:20
why would we do that? There's not no reason to do that. Oh, you're a nurse. Geez, you don't know anything. Like, yeah. Like, I got you

Speaker 1 46:28
Yeah. So I was, like, pissed. So then I got my kids screened, and then getting them screened, I kind of started to look into Teasel a little bit more, because I was, you know, wondering why I'm screening my kids, right? Like, I want to make, kind of make sure, like, I know what I'm doing. Why I'm doing it? What would happen? I start reading about T cell, and I'm like, wait, like, Could I get T sealed? Like, I started thinking about it, and then I asked my atendo about it. I said, hey, I'm interested in this medication, T sealed. What do? What do you know about it? And she responded, Well, you don't qualify for it because you only have one antibody. So then I have to email her back. Well, can you test for the other antibodies?

Scott Benner 47:01
Yes, we only looked for one. So yeah, we found that one. What if we looked for more? So

Speaker 1 47:05
then she said, T cell is a medication for children, and if you had more antibodies, you would have already been diabetic by now, like when you were a teenager. And I said, Great, so can you just test for those, please? But that's not right at all. No, it's not right again, this is then. I had another time where I got asked for those tests. She She said, Fine, I'll test for them. She did. They all came back positive, positive for all of them, except for insulin antibody, which she couldn't test me for, because at that time, they had just put me on insulin. It's like a Pokemon. You collected them all. Yeah, I know. So like, again, I got that test result back, and I was had this like crazy feeling when I when I came back positive, of, like, I knew it, I win. And then again, I was, like, again, not really a win at

Scott Benner 47:53
all. Do you go back to her and say, hey, if I have all five of these, how come I haven't had diabetes for 30 years?

Speaker 1 47:59
No, I, like it was in our messages. So, like, I just really hoped that, like, she had to look at her last message a little bit before she and I said to my friend, I said, I hope she chokes on her coffee this morning when she sees this. And she's my friend, so mean, says to me, she probably doesn't care at all. And I'm like, You're right, she probably doesn't care at all.

Scott Benner 48:18
What do you think? But how long have you been a nurse, 13 years. Why do you think this happens?

Speaker 1 48:24
I think that she really didn't know anything about type one or adult onset type one, and she really was just only dealing with type two and like, I don't know. I just

Scott Benner 48:34
think that's the functional reason. Why do you think a person who is holding your health in their hands, right? You're the one. You're coming to them and saying, I don't know what to do. You help me. And they answer definitively over and over again with the wrong answers,

Speaker 1 48:51
yeah, yeah. And like, I don't know. I don't know the answer for that. I know that healthcare is not perfect, and I see a lot of things happen that aren't perfect all the time. That's just the way it is. And I guess I'm sort of accepting of that, because I've seen things happen, yeah, all the time in a completely different setting, that in the hospital, that is, we do a great job, but I things aren't perfect, and you really do have to watch for watch out for yourself. And like that leads into, like, something else I emailed you about, of just medical distrust, which is, it is funny coming from somebody in the medical world, but like, I mean, I watch doctors looking up things on YouTube, like they don't, they don't know everything. Yeah, they really don't.

Scott Benner 49:33
Sure. I'm freezing up because I don't know if I said this on the podcast recently or not, but if I did whatever, you just live through it. Arden had to go to the emergency room this weekend. She's got tonsillitis. She gets it a lot. We're probably gonna have her tonsils taken out. She starts on a Monday on an antibiotic that she runs for three days, no change. They change her to another antibiotic four days. No change. By then it's Sunday night, two. We really are, like, something's like, she's in trouble. You know what I mean? Like, her tonsils are crossing each other. I'm talking to the doctor on the phone, and the doctor's like, Hey, I think he, you know, I'd like to move her to and she gave me the name of the of the antibiotic. She's like, a much more broad spectrum, but she's like, I can't get it to you now. Like, I think maybe she's at the point where you need to go to the ER and get this through an IV. And I was like, All right, fine. So, like, It's nine o'clock at night on a Sunday, and, by the way, fine, I'm old, like, at this point, like it was the end of a weekend, and I did things that weekend. Like, the last thing I should have been doing was driving to the hospital. Like, all right, right, on, let's go, you know. But while Arden was getting her stuff together, I walked chat GPT through the last week and a half, or the last week of her life with this, and asked what I should expect to happen at the hospital. And then I read through it real quickly. And then I went to the hospital. I did not, I did not look at it while we were at the hospital. And we got a very proficient doctor, okay, and I felt very comfortable the whole way that she was going through things, the way I would expect, and everything. But I stopped maybe three hours into our time at the ER and I went back to chatgpt, and it was like she was reading from chatgpt, which made me realize that this is a thing she probably deals with all the time. So she knows the words to say, because she's probably said them 1000 times, and that this is a very clinical thing. There's not a ton of different answers to these questions. But I was stunned at how perfectly the AI mimicked what she said, which, instead of making me think like, oh, wow, AI is awesome, it made me think she doesn't really know that, much like this is not a special magic person standing in front of me. She just knows the things that this thing just knows how to get to as well. And then we got to the point in the night, Arden had had IV steroids, by the way, I asked the nurse administering the IV steroids, I said, about how long until I see this impacting her blood sugar. And you know what she said? Three days? Oh, three days. Three days. I said, Not 30 minutes. No, about three days. I said, Okay. I texted my wife, I can't listen to the nurse anymore. Now I know she's willing to say she doesn't. Doesn't matter if she knows what she's talking about or not, she's willing to say whatever pops into her head. The doctor says, Look, we're going to image to make sure Arden doesn't have an abscess. I said, that's fine. And if she doesn't, she goes on. If she doesn't, you know, you head home, blah, blah, blah, like all this stuff. If she does, we have to keep her overnight, because she's gonna need another round of IV antibiotics, and, you know, otherwise, like she's going I said, Okay, well, why don't we wait to see what happens when the scan comes back? So now it's 230 in the morning, and the scan comes back, and she says, Great news, no abscess. I'd like to admit Arden. I said, why? She goes well so she can get another round of IV antibiotics tomorrow. And I said, Can't you just give her oral antibiotics, the same one that she could, like, I could pick it up tomorrow morning, and she could keep going with it. It shouldn't be any problem, right? No, yeah, you can do that. And I said, Well, I said, then I'm gonna do that, because three o'clock in the morning, I just want to be candid. I've been through this before. I don't want Arden diabetes being managed in a hospital if they it doesn't need to be, because, no no offense, you don't know the first thing about it, and either does anybody upstairs, and there's gonna be steroids on top of everything else, you're gonna be waking her up all night long to check her blood sugar when she doesn't need it because she's wearing a CGM. I want her to go home and rest and let these antibiotics work. And she goes, Well, airway. And I said, her airways look like this for seven days. You think she's gonna die tonight? And she goes, No. And I went, Okay. And she was, well, I could get a form for you to sign, and you could relinquish the diabetes from us to you and we won't touch it. I said, So your answer is that you're not going to help her at all while she's asleep in the hospital. I'm like, wait a minute. She might need some help. Like, I'm not saying, like, let's forget about it. I'm saying, Don't tinker with her diabetes. And they went back again, and I was like, so why do you want her to stay? And she goes, Well, I'm worried about her airway. And I said, Do you think it's going to be a problem? And she goes, No. And I'm like, I don't know what we're doing right now. And I was like, I'm going to just, can I just get a prescription for the antibiotic? I'm going to pick it up in the morning and I'm going to take her to an ENT tomorrow. And she goes, Oh, you'll see an ENT tomorrow. And I said, Yes, I promise. And she goes, Oh yeah, sure, you can leave that. And meanwhile, my wife's texted me, well, if they want to keep her, let them keep her. And Arden's, like, we got to get the hell out of here. Also, Arden's still dealing with a needle phobia. There's an IV in her arm that's been in there for six hours that she's been staring at it for six hours. Like, I can't believe there's a tube in my arm, which is, I know, ridiculous, but it's a thing she's going through. Anyway, I get done, and we get out in the car, and Arden goes, Why did she want me to stay so badly? And then give up on it so fast, yeah? And I was like, yes, Arden, that's the right question. Yeah. Is it a problem, or is it not right? Like, you don't have an opinion, yeah, yeah. And so, like, your. Opinion was my opinion after she knew that my opinion wasn't her opinion,

Speaker 1 55:05
which is good when you feel like, okay, I got them to do what I want, but then you're like, but wait a minute, like, why is it so easy

Scott Benner 55:10
to right? Because now I'm in the car at three o'clock in the morning thinking like, am I taking her home for her to like, aspirate? Am I wrong? Like, because I don't like, I don't want to be wrong. Then I went back through my common sense again, and I was like, No, I'm like, This doesn't look any worse than it's looked for days. She hasn't died so far, and now we've hit her with such a broad spectrum antibiotic that the truth is that if this doesn't start working, she's in some serious trouble that does not appear to be going that way at all. But all that aside, tell that whole story like, so I can tell you, like, what I know for sure is that that lady didn't know anything for sure, but she kept telling me she did. And then I pushed back, and then she went, No, it's fine. And I wasn't like, I know what now I'm I'm a little heated while I'm talking about it, but I was not argumentative or allowed like I was talking to her very normally. I'm like, you know, just asking questions, letting her answer the questions. And anyway, my The last thing I did was I went back and I asked chat GPT the rest of the conversation. And chat GPT was like, Yeah, I don't think that she needs to be admitted to the hospital. I was like, I keep saying this, but like, How closer do we to medical people just being the facilitator of what the machine tells them to do.

Speaker 1 56:21
Yeah? I mean, I think we're I think we're there. I think a lot of what I've because I've been so crazy in the last little bit, like, I've been listening to a lot of, like, medical, like, really, in the weeds medical podcasts. AI is definitely coming for their jobs. Yeah, sure. No kidding, right? Especially radiology. Radiologists are they're done.

Scott Benner 56:44
They're scrambling. Also they're done. I know a guy who's got a friend who makes a small fortune living at home, oh, at home, reading scans.

Speaker 1 56:52
I think you better invest well, because they're time is ending, but partially to you, I think I've been using chat GPT for a lot. I find it really helpful for communicating with doctors, because I'll ask it something, and then I'll say, please use medical journals citation. So then it will give me this. So I'll ask it a question, and I just copy and paste it to like my doctor in response for something. Because they'll be like, No, we don't want to do that. And I'm like, well, the evidence and the research says this blah, blah, blah, and it's very like, you know, chat GPT is very unemotional, like, and I don't have to get all worked up writing it. I can just be like, okay, yeah.

Scott Benner 57:33
A year ago or so, I had a guy on who was talking about this AI thing that they guy was developing for diabetes. And the truth is, is, I don't even know if he's still working on it or not, but I do know that he pivoted a little bit and came up with another product. And I don't think he would mind me saying it was an idea I had that I shared with him. It's going to be for endos and for diabetes educators, right? But you're going to sit down and do your, you know, do your visit with a doctor, but the the AI is going to listen and record the whole thing, and then it's going to do the transcription notes for the physician, and it's going to pull out like, like. So my idea was and remains, that if you spoke into an AI that that had memory and continued to tell it, you know, visit after visit, year after year, all of your concerns that eventually it might be able to piece something together and go, Oh, you know what? Three months ago, she said her hands were cold, and two months ago she said that, you know, her digestion was off, and that could this person have low iron? Like, you know what I mean, like, that kind of thing that a doctor's not going to put together. Because I know people love to go to the doctor and think, Oh, they're so nice. They, you know, they always remember this or that. I'm like, I tell people all the time, like the last thing the doctor does is stand outside the door and look at your chart so it appears like they remember you when they come back in the room. And I was like, I know you remember them because, you know, it's a much more. It's a different relationship you have with them than that they have with you. But you can't expect those people to remember that six months ago you thought, you know, you got dizzy when you stood up real quick, like or something like that. But if you continue to have that conversation and that AI remembers you and everything you've ever said, I think people are gonna come to like, diagnoses of like, you know, from as simple as my settings aren't right and need to be adjusted to this person might have Hashimotos or like, like, that kind of thing much more quickly. Yeah, yeah.

Speaker 1 59:32
The most recent thing I used chat GPT for that saved my life was, I guess, a little segue into, so I ended up changing insurance from Kaiser to a PPO, we have either option, so I started using the providers at the hot the university hospital that I work at with the hope that they would have some better perspective about this. Also, when I was screening my kids, I asked the. Research assistant who was asking me about my diagnosis, and you know why I'm having my kids scream, blah, blah, blah. And she said, Oh, the adult endos at our hospital are so great. And I was like, Can you give me their name, some names of some recommendations. So she did. I looked up those doctors. I emailed that doctor on my work email, which was really worried that was like, overstepping somehow. I was like, Hi, I am a nurse in the blah blah blah, and I'd really like you to take me as a patient. Because, like, those they, you know, and those are really hard to come by. And, like, basically, they said, This doctor only takes patients by. Like, they go, they look at it, and they decide if they want to take you or not. And I was like, great to, like, audition for this doctor. He ended up taking me as a patient. The first visit we had was in April. So I switched insurance, you know, January, have a visit in April. So basically, between, you know, I was basically on my own. Anyway, from the whole time, you know, they prescribed me insulin, they told me very bare minimum what to do with it, and that was pretty much it. But, like, I really didn't even have a doctor helping me until April, like, basically a month ago. Yeah. So I had my first visit with him, and he had some interesting things to say, which was really, like, surprising. So he immediately started me on a medication called verapamil, which is a blood pressure medication, but they've found has benefit, like, off label benefit of beta cell preservation. Okay, so that was new information. I'm telling my sister, oh my gosh. Like, I have searched the internet, like, for Lata type information. I was like, he knew something that I never have even seen. And she was like, Well, I hope he does. And I'm like, okay, true, true, but I haven't found that to be true. He started me on this medication that supposedly has really good beta cell preservation, and with the idea that, like a lot of the studies they're doing show that, like any beta cell function is benefit beneficial? So that's like, his number one, he's trying to get me t sealed after Kaiser said, No, we're not giving you T cell,

Scott Benner 1:02:08
because it's not just for kids, right? It's, no, it's not. And, like, I said that, I was like, that doesn't sound right to me,

Speaker 1 1:02:15
but it's not. It's not just for kids. They it's, I mean, it's up until 45 so this is technically my last year I could get it. So if I get it, it will be hopefully this

Scott Benner 1:02:25
year, but it's a thing you're up for trying.

Speaker 1 1:02:28
Yeah, it's awesome. Totally, yeah, you too, yeah. And even though, like, at this point, it doesn't feel as dire, last fall, it felt so dire. And I think I was really wrapped up in trying to get it, because I was really wrapped up in, like, trying to stop it from happening. But now that I've been in on insulin for a while, it's kind of like that ship has sailed, and I'm kind of like, well, if it gives me some benefit, then that would be great, yeah? But it's not like I'm expecting, it doesn't

Scott Benner 1:02:53
feel like it's a do or die thing for you at this point, yeah.

Speaker 1 1:02:56
But it felt kind of do or die last fall. I was like, yeah. And then I filled out, like, a whole medical grievance and like that when I really didn't want to, it felt like something I didn't want to do, but I did it anyway. Actually, I really wish I had asked chat GPT to help me with that. And I think my argument was great, but the Kaiser said, No, that's no, you don't we're not giving it to you, really. So he then tried to get me that and like, even though it is not just for kids. I think a lot of the screening that has been done is kids and siblings of type one kids. So I think a lot of the population that is that T cell is being focused on is kids. And if I were to get it at my very big university hospital, I would be the first adults on the adult side to get it. They have done a few kids, but they haven't done a lot. I mean, that, I think the thing with tz is it's so expensive, it's

Scott Benner 1:03:46
tough to, like, it's like, a 13 day infusion or something. Yeah, a lot of people have to, like, go somewhere, stay in a hotel while they're doing it. Like, it's, it can be, yeah,

Speaker 1 1:03:55
yeah, they're doing a lot of home infusion though now, so, like, I could have it done at my house. That's awesome. Yeah, so we'll see where that goes.

Scott Benner 1:04:03
Can I run something past you? I've been working on something that I haven't really told anybody I've done yet, but I've set up a private like circle community for the podcast, which I'm getting ready to make more available to everybody. And I, you know, I'm not gonna charge anybody to use it, even though it's a pretty significant cost for me to run it, and I'm doing it because the platform now comes with its own AI agent. I can feed it all of the content from the podcast, and then when you ask the AI agent a question, it only answers you from what's been on the podcast. So like so I just asked it, what should I do if I suspect Lada and doctors aren't listening to me? Yeah, and it said, If you suspect you have latent autoimmune diabetes and adults are Lada and feel like your doctor's not listening, here are some steps you can take to advocate for yourself. Educate yourself. Learn as much as you can about Lada. Understanding the symptoms, progression and differences from other types of diabetes can help you communicate more. Effectively with healthcare providers anyway. It goes on document your symptoms, tells you about how to do that, request specific tests, seek a second opinion, clearly communicate leverage support networks around you, tells you what they might be consider going to a diabetes educator instead of your regular doctor. And then I said, Okay, great. Can you educate me? And it said, certainly. Here's detailed overview of Lada. What is Lada tells you a lot. It tells you what the symptoms are. C peptide test, antibody testing, differences between that and type two, how you would treat it with monitoring, insulin therapy, lifestyle modifications, challenges in diagnosis that's just pulling from. Oh yeah, the small sips, bold beginnings and Pro Tip series. I haven't even uploaded everything yet. Yeah, I'm trying to be way ahead on this, because I think this is the way a lot of people are going to figure things out, and I figure maybe help them get to the answers, and at the same time, giving them a community to talk about it in is my idea. So,

Speaker 1 1:05:56
yeah, every time I listened to a lot of episode, it was like, like, I just felt so like, heard and not so alone, you know, like, because it's just like the stories are the same. And I mean, my story, honestly, is not as dramatic as a lot of stories, like a lot of people end up in the hospital in DKA. I kind of credit my I credit myself at least a little bit with like that. I was trying to monitor really hard. I was trying to do my best, but and, you know, I think I did what I did, and they did what they did, and I think we

Scott Benner 1:06:28
are and we just make the best of it. Listen, I know a person who's going through this right now privately, and parts of their life are falling apart like it's not like they've got relationships that are coming apart. It's a weird position to put somebody in, like, you have a thing kind of, maybe we're not really gonna do anything about it. Just watch it, like, that's like, whoa. What am I? Like, you know, and then, like you said, like the running around trying to fix it, or bargain your way out of it, or ignore your way through it, or whatever ends up happening to you. Like, none of that's valuable. None of it. Yeah,

Speaker 1 1:07:02
and I think, you know, there's always this question of, like, Is it easier as a kid or as an adult, like to be diagnosed? I don't think that's a really helpful question, but I see it thrown around a lot, and I think for sure, it's harder for kids, like, that's my opinion. It is hard as an adult, because, you I think there's a lack of, like, empathy for adults. Like, there's this, like, well, you there's like, a kind of a, maybe it's, maybe it's me, but like, I do feel like, I feel like I could have prevented this, or I should be doing more. And like, because it is so confused, in general, with type two. And like, the narrative around type two is that you can reverse it. So it's like, this constant, like, explaining to people that you can't reverse it, and it's like, I didn't do this to myself. And then I'm like, why am I even explaining this to anybody? Like, why do I even feel the need

Scott Benner 1:07:53
to, like, it's a pretty human trait to not want people to think you messed up. That's for sure. Yeah,

Speaker 1 1:07:58
yeah, yeah. I guess that that is a big part. You just really but then you just feel so kind of pathetic. Like defending yourself, like, over and over. Like,

Scott Benner 1:08:06
also that one human trait, right there is probably the thing that stands in the way of there being better communities for people with type two diabetes. It's a

Speaker 1 1:08:14
big issue. And I will say working in healthcare like diabetes really is thrown around as, like, an accusation. There's so much stigma. And like, the unit that I work in, there's so much, like, sigh, uncontrolled diabetes. You know, people just say this, and they don't even really know what they're saying, and they just say it as this, like, indictment against somebody. And now I just get so bothered by it. I'm like, imagine, you don't know what's going on with this person?

Scott Benner 1:08:40
Yeah. I mean, listen, when you watch a thing unravel and eventually fail. When it eventually fails, it normally fails because of, like, some lack in, in human understanding, compassion, desire, like, something, at some point a person fails, and that's where the thing goes off the cage. Like, like, how crazy is it that a medical person would like come in, smile at you, do the whole talk up, then walk out in the hallway and look at a friend and go, there's another one in there with the diabetes? Yeah? Because that person, probably mom, probably has diabetes, or somebody in their life does, or they might end up having it one day, and then, you know, once it's too late and they understand it's you can't go back.

Speaker 1 1:09:19
Yeah? Yeah, I use chat GPT because then my new endo set me up with Omnipod, and he happens to be like an expert with Iaps trio. So he set me up with, he built it for me. Awesome. So it's exciting. It's been, it's really new that I'm using it. It's really cool. And I'm still, I'm just, for the first time, feel hopeful and like, happy and like that, somebody is taking care. You get

Scott Benner 1:09:47
a little help, right? I mean, are you able to give away, not giving up on but giving away that feeling of like, I've done something wrong and there's more I should be doing. Like, is that, is that lessening for you, or is it still holding on to you pretty

Speaker 1 1:09:58
good? I think it's still. In there somehow, like coming up on my meet, like my appointment with him, like waiting, there's so much like anticipation. It was like, had to wait so long for this visit, like I had. I kept thinking, what's he gonna say? Is he gonna say you should watch your diet? Like, it's still like, is in my head, like you should, you could have done something better, you you should have been able to do this without insulin. You know that's not true. Then I do know that's not true. It's just

Scott Benner 1:10:30
it's hard to it might be therapist time. Claire,

Speaker 1 1:10:33
yeah, so that's another part I did. I did, like, last year, when I was with Kaiser, I recognized that I was having a really hard time. I was, like, really depressed and like, having a hard time. So I was like, I don't want to do therapy, but I guess, oh, that was the thing when I saw my primary, when I first went in 110 pounds, saying, I feel like I'm trapped. I can't eat, but my blood sugar is high. And she was like, Do you want meds? Oh,

Scott Benner 1:10:57
she wouldn't give you insulin, but she'd give you a psych med. Yeah,

Speaker 1 1:11:01
yeah. And I said, No, I don't think that's necessary. I think maybe counseling would be a good idea. And she said, Okay, I can refer you to that. And the other thing that she did this is, I'm like, rehashing. It's hard not to rehash the like, bitterness. But like she said, you know, after talking about my blood sugar, then she was like, but I am worried about your weight loss, and I'd really like to try to figure out what's going on. And I was like, I think it's my diabetes. And she was like, I'm gonna do a full workup. We're gonna do labs, we're gonna do imaging, just to make sure there's nothing else going on, like cancer.

Scott Benner 1:11:36
So instead of elevated blood sugar leads to weight loss. She said, maybe you have cancer.

Speaker 1 1:11:42
Yeah. She was really trying to figure out what was going on with me. She didn't know. I

Scott Benner 1:11:46
don't know what to say. I'm gonna give up. I know. Well, listen, I say this all the time. I'm happy to say it again. You guys out there, I know there's some great doctors. God bless you. Keep going the rest of you. I really appreciate you making my podcast so popular with your inept use of your profession, if everyone would just do their job, nobody would listen to this.

Speaker 1 1:12:06
Yeah, I know it was like and then later I went back and I read her visit notes, and she wrote that I had OCD tendencies and was too

Scott Benner 1:12:14
focused on my blood sugar. Do you get to leave notes? Yeah, I

Speaker 1 1:12:18
did. I left a few notes about it. I left my feedback for Kaiser, very strongly. I used her name, and I said, I want to make sure that this doctor name knows that she made my life worse.

Scott Benner 1:12:31
See, you're as polite and pointed, I would have been like, I just want everybody to know this lady's a and I don't have OCD. She went from ignoring my elevated blood sugars and them being a reason for my weight loss to I need 10s of $1,000 worth of tests to prove that I don't have cancer.

Speaker 1 1:12:48
Yeah. But then the funny thing was, so then I did the labs, and she said, depending on the labs will do imaging. And so then at my next visit with her, I said, so we did these labs, and you talked about, you were worried about something going on. What's the plan with that? Are you still worried about that? She's like, we'll talk about that.

Scott Benner 1:13:02
What she meant, I don't remember who you are, yeah, yeah.

Speaker 1 1:13:05
No, she I was like, so I was like, so you're not worried about that anymore. Or are you worried about that? Remember how you were worried about that? She was like, but she's like, why don't you go and see your Endo, the Endo, and then we'll touch base later. And in my mind, I thought I am never looking at you again. I

Scott Benner 1:13:19
don't know how more people aren't assaulted. Jesus, I'm sorry. I mean, like, I didn't do it to you, but I'm so I hope the podcast has been helpful in some way for you.

Speaker 1 1:13:28
Good. It has. It has been so helpful. I was thinking about like, you know, what is it why I started listening to it? And I was like, I hear a lot of people say the same thing, like, I felt just compelled to keep listening to it. I think, in a time in which I felt just very alone and like confused, it just, I don't really like the Facebook groups, not yours specifically, but just in general, I don't like the vibe of the Facebook vibe, but I really like the podcast. I like the people's stories, how different everybody is, how different everybody's situation is. For me, it was really helpful. Like, hearing people who had so much going on and still had such a positive attitude and were just getting through all of the things, and I thought, Gosh, I only just have this one thing, like, get it together, not in a bad way, but just sort of like, you know, but like, it's different when you're all going through the same thing, you know. Like when somebody who's not going through it's like, just be fine. You're like, Screw you. But like, when, but when my sister tells me something, I can like, able to like it like I can hear it, because I know she's going through it, she understands, yeah, and I forgot to mention my new endo has type one himself. That should be helpful. So, yeah, also, so that's helpful. And then so I did that therapy through Kaiser. That was not helpful at all. The person was not helpful. I found myself having to explain, like, why diabetes was stressful a lot of the time, you know, like, I just haven't explained a lot, you know, like, she was just like, oh, okay, well, what you should do is, like, not be so stressed about

Scott Benner 1:14:54
that's the thing I joke about, you know, I get on the podcast, I'm like, hey, you know you should, you should calm down. Because I know that's. A ridiculous thing to say to somebody who's experiencing stress,

Speaker 1 1:15:03
yeah, yeah. Or, like, I was like, I'm really stressed out, because I tried to spell out all the things that doctors had done, like that they were wrong about, and that I was right about, and that I really felt like stressed out, that I had to watch every move and I had to, like, I felt this. I was a little, I mean, I was a little crazy, like, I felt like I had to know everything, because it didn't feel like they were doing anything, you know what I mean? So like, I was really hyper focused, because I felt like if I wasn't, then something was gonna get

Scott Benner 1:15:35
missed. That's not baseless, because a lot is being missed. Yeah, I'll take you back all the way to, like, Arden being four years old, and me going into the school to say, like, look, we have to start. Let's set up now how we're gonna handle it when she gets here for kindergarten next year. And they were like, they laughed. They literally laughed at me. And by the time I left, I was like, Oh, they think I'm crazy. The difference between you and I is I'm a bit of an asshole too. So like, I'm like, You seem like a nice person. Go. They think I'm crazy. They don't know what they're talking about. You take it more to heart when somebody says something like that to you. Like you're like, Yeah, I do. I have no ability to, like, care what they think. By the way, I care of what plenty of people think when they're making sense or they're exhibiting that they care or understand something or whatever. But like, if you're just gonna look at me blindly, know nothing about type one diabetes, and then tell me I'm overreacting, like I've been living with it for two years at that point, like I'm not over, I'm telling you, but bare bones needs to happen. You're in the same situation really, like you're not crazy, like you're you're in a really bizarre situation that a takes time to, like, get through personally and psychologically. B is supposed to be assisted by a physician. And every physician that you run into seems to be a dick. Yeah, I'm not crazy. I'm like, I'm looking around. And, you know, none of the things that are supposed to be happening are happening right now,

Speaker 1 1:16:55
right? And it's hard enough to go through it, and you do feel like, yeah, I have grief about just the diagnosis, like the lack of, you know, like a lot of as an adult, you're like, I love I live my whole life with this freedom about things, and now all of a sudden, like, everything feels different, and that's hard, but like when you're going through those feelings of grief, like with any chronic illness, or you know it, or you know, things that happen in life, but then you're also feeling like You're having to micromanage. You're having to become a doctor in your spare time. You're having to check everything that's happening, reading medical journals, like struggling, and then arguing with people, and then they keep they keep arguing with you, and you're like, at what point are you gonna, like, realize that it's irritating. You're not doing a good job. You just feel so kind of like you're just in battle mode, and it feels, yeah, exhausting. Advocate

Scott Benner 1:17:43
for yourself. Oh, I advocated for myself, and the person told me to go away, or ignored me, or just pushed me off to another doctor and then wrote my notes that I have OCD because I care about my blood sugar. And

Speaker 1 1:17:53
then she was like, you're stressed out. I'm like, I'm stressed out because my blood sugar is high. She was like, stop looking at blood sugar.

Scott Benner 1:17:58
I'm like, the right answer. It's no, you got it wrong. Yeah, you know, I'm on a tightrope over a volcano. I gotta look at the rope. Okay? Like, can you move the volcano? That would be helpful? Like, like, don't tell me to ignore something that needs attention and you're not willing to give it attention. That's

Speaker 1 1:18:14
crazy. And then say I'm crazy for being upset about it. And like, they would, they told me, parameters are, like, if your blood sugar is not less than 182 hours after you eat, then, you know, blah, blah, blah. And I'm like, my blood sugar is not less than 182 hours after I eat. They're like, that's fine. I'm like, so what's the point of the numbers you're giving me? And they're like, every once in a while, like, if you have a piece of cake, I'm like, I'm not saying I had cake. I'm saying I had plain pre

Scott Benner 1:18:37
carbs, not cake. Why is nothing making sense? You know what? Between you and I, Clara, I know your name's not Claire. I hope she chokes on her coffee too. So yeah, and maybe spills a little bit about herself at the same time while she's joking. I mean, really, I genuinely try so hard to remind myself, like there are great doctors there. You could have intersected a physician. None of this would have happened.

Speaker 1 1:18:58
Yeah, every once on the podcast, I'd hear somebody be like, Oh, this happened, and they referred me to Endo, and they did this. And I'm like, Oh, awesome. Oh, man, like that

Scott Benner 1:19:07
would have, what would it have been like, I would have met somebody who understood their job. Yeah,

Speaker 1 1:19:12
I do think about that, though, and I wonder, like, how it would have or, like, I look back at my a one CS before, and they were 5.6 for quite a while, it didn't flag to me because it was in their green range, like, after my pregnancies, it was 5.6 a couple times. And now looking back, I'm like, Oh, 5.6 that was in some

Scott Benner 1:19:34
zone on those I yeah, I probably don't complain about it enough, but people who don't know what they're talking about, they're just like, green, good. Green's good,

Speaker 1 1:19:43
yeah, well, I mean, you can only know so much. Like, at that point, you know, I had two little kids thinking about, like, No, I know, I know. But yeah, they never said anything. But I do think about, like, what would have I done if, like, that 5.6 they had been like, you should watch your diet. Like, you know, three years, four years before that. That's, again,

Scott Benner 1:20:01
no, that's not what would have happened if, if you would have asked me five or six years ago, if you would have said to me, Hey, Scott, my a 1c has been 5.6 for a while, what do you think about that? I would have said, is there any history of type one diabetes in your family? And you would have said, Yeah, my sister and I would have said, Hey, I think you're a lot of like, that's not hard if you ask chat GPT that it would have said that if you went in there right now and said, Hey, pretend I'm a 42 year old female. My a 1c has been 5.6 for the last 18 months, and my sister has type one diabetes. What do you think I should do? It would tell you you should go do all the things that you're supposed to do. That's the thing. I put up an interview recently with a young girl. She's like 26 right? She's got all of these problems, and she lists them out. A lot of them sound like hypothyroid, right? And I said, Hey, you ever been tested for hypothyroids? Yeah, no, it's good. My, my tests are good. I'm like, you have access to those tests? She says, sure. She pulls them out. Her t4 is like 2.6 and I said, 2.6 with all these things, you have a thyroid issue. And then I talked to her for a little while longer, and I was like, you're anemic. And she's like, right? And I'm like, All right, well, we maybe don't trust the high TSH because you're anemic, but let's get a an iron infusion, get that fart and up, and then after it's up, we'll rerun the thyroid labs if you're still 2.6 and I'd like to see you do a thyroid replacement. Now, there you go. Clara, I barely got through in high school, okay. I never went to college. I am not a physician, and it took me eight minutes to help her. I

Speaker 1 1:21:29
feel strongly that my providers were very lazy, and they just were doing the absolute bare minimum, and they were just had an extreme lack of interest in my health or my well being like that was my feeling, and that is what I told Kaiser as at my exit interview. But they're like, why are you leaving? And I'm like, basically, I found your doctor.

Scott Benner 1:21:47
Nobody helped me, and you won't change it, and they're not going to change and everything listen. I mean, if I had one message for people in medical school, like, if you're an adult, like, really try hard not to be in the part of medicine where you deal with people because, like, it's not for you. You know what I mean? Like, I know people have a bad day once in a while and everything, but you're describing, like, multiple visits this person had a number of opportunities to, like, pull their head out of their and treat you differently, and then they called you O, C, D at the end. Like, so you know, if you're bad with people and you don't really care about their health. Like, why don't you get a different job? Like, let's maybe get a couple more doctors who give a like, maybe that's what I'm seeing, is that the good ones care and the other ones are just, like, I don't know. Like, I'm just trying to make enough money to make a car payment here and get a cool beach house. So, you know,

Speaker 1 1:22:37
yeah, I mean, it's not the right field to go into if you're just trying to live it not for

Scott Benner 1:22:43
you. Quiet life, not for you. It's not, not for the patient. It's, it's, it's probably a great life for them. They're not thinking about a goddamn thing, and they're making a, you know, a couple $100,000 a year. I bet you it's pretty awesome. So I don't know. Anyway, you're being beat by a pot. You know how you were celebrating something ridiculous. I'll celebrate something ridiculous too. I'm a podcaster, and I could figure this out. I know. Okay,

Speaker 1 1:23:06
I felt the same way. I was like, you know, anyway, I felt like I learned everything from the podcast, and the podcast really helped me. I think, I think what I like about the vibe of the podcast in you is like, you have, you take it seriously. Obviously, it's something that's been serious in your life, but you have, like, this positive, like, we can do it attitude. I think that really resonated with me and made me feel like, yeah, we can solve this I can solve this problem. Like there are tools. Because up until then, it was like, Yeah, you got this problem. Don't have anything for you. And

Scott Benner 1:23:40
the people are supposed to have the answers, have, they're literally less than helpful. Yeah, they're just like, that's too bad for you. They might be making it worse, if I'm being honest, right? Yeah, no, of course you can. Like, this is not rocket science. Like, there's, there's just a couple of things to know and about how to use insulin. There's a couple of things to know about food, and there's a few things to know about your testing and your you know your your vitamins and your your you know your your additives that you need for your life and stuff like that. Like, that's pretty much it. And you know you have autoimmune issues, so there might be extra ones. So, like, let's look out for them, because they impact each other. There you go. Is the whole secret. I didn't even need to go to medical school for four years. I'm an endocrinologist now. Yeah, by the way, you're never going to be privy to the private conversations that I've had with two dozen doctors who will tell me privately, you're a better endo than half the people I work with. And I'm not just saying that to say that, like, that's been said to me so many times I've lost count, and that's ridiculous, which what that means it's you're not saying something about me, you're saying something about them. They could do it too. Like, just like I'm telling you, you could do it. What I'm hoping they're hearing is, you know, what, with a tiny bit of effort, I could do this for people. And since it's already my job, and I've got the degree, what the hell, why don't I go for it? You know? I mean, we're already here, might as well do it.

Speaker 1 1:24:57
Yeah? Well, I listened to i. Like I was. I actually not really wanted to listen to any of the episodes with Erica. I remember seeing them and being like, I don't want to hear about therapy. I hate therapy. And then I listened to a few that really like resonated with me. And out of curiosity, I looked her up and saw that she takes a benefit that I have at work, Lyra. So I've been talking to Erica awesome, which has been super helpful. I can't even, like, express like, the difference, like, of the feeling of talking to someone just who understands, like, I don't have to, like, explain things. I can just talk about the things that are bothering me and like, we can talk about that, as opposed to be like, well, this is stressful because, like, you know, and I'm explain a bunch of things,

Scott Benner 1:25:42
I always feel better after I talk to Erica and she's not my therapist, which I think I have to say legally, or she'll like, she gets mad at me, because there are times when those episodes, I'm like, she's like, I'm not your therapist. I'm like, I know, I know, I'm just talking through but no, she's

Speaker 1 1:25:56
good. It's a good ruse you have better on the podcast, how

Scott Benner 1:26:00
I'm getting how I'm getting free therapy. Yeah, don't let her hear that. She's crying already. If she heard you say that it's helping her, she's all like, she's all touched right

Speaker 1 1:26:09
now. So, yeah, it's like, I dreaded talking to the other person, and like, I don't I. I'm like, Yay, it's my time to talk to Erica. And I talked her, and I joke with my sister that I'm just weeding everybody out of my life who's not a type one diabetic like in order to be in my life now, you just have to have diabetes.

Scott Benner 1:26:29
I hope I can get a grandfather and I don't have Yeah, thank you. That's fine. Oh, listen, I don't want to be a bummer at the end here, because I have to go. But yeah, there's a lot of times that cash doctors are going to be they could end up being more valuable than institution positions. And, you know, it sucks to say that, because the idea is like, you know, keep trying. Do you find the one you want? But like, what do you do once you've tried the second one and the third one, you're like, This is just this ain't going anywhere. You know what I mean, especially if you're doing it for mental health, you're already not in a great place. And you're like, Oh, I tried one. I'm talking to him. This is valueless. Like, what if you would have kept going with the Kaiser dog? Kaiser doctors like and had a couple of more bad experiences. So yeah, there are bad

Speaker 1 1:27:07
doctors and good doctors in all the networks. So it's not like Kaiser is the only there's, I'm not saying there's anything inherently bad, but like, and in any of them, it's like, anyone that's good is not taking patients. You're like, great. That's not helpful to me. Well,

Scott Benner 1:27:19
that happens real quick. The good ones people find out about, and then they don't have a spare half a second in their life.

Speaker 1 1:27:24
Yeah. And also, they stay with them. They don't leave the doctors that have availability, like have openings, and like, this endo that they referred me to, I had an appointment the week after, which terrified me. I was like, you have an appointment in a week? I thought endocrinologist had, like, a long waiting list. I was like, this is kind of scary. That's

Scott Benner 1:27:40
so funny. You said that my wife was like, Hey, I we're looking for an ENT for Arden, like, when she was sick last week. And I said, I know where I'm going to take her already. I'm going to use the guy that just fixed my nose. I liked him, etc. And she goes, Oh. And I just talked to a friend of hers and her friends, like, oh, I have a friend who's an ENT. He can see her today. And I my wife's like, it's good news you can see today. I said the same exact thing. I think this is why you like the podcast, because, because you're skeptical like me, I was like, Why the hell has he got an opening today? Yeah. I was like, Does no one want to see him? And maybe I'm completely wrong, but stands to reason that the shelves that are empty at the grocery store, that's the stuff people like eating.

Speaker 1 1:28:12
Yeah, yeah. Well, I'll say my new window is really great, and I did have to wait a long time to see him, but he also spent two hours on a Zoom meeting with me on a Friday night setting up my trio. And that's awesome. I feel really lucky to have new, new

Scott Benner 1:28:27
people make sure his name's on my list Juicebox docs, if it's not there, sending me an email and I'll add them to it so people can go find him take up the rest of his free time.

Speaker 1 1:28:36
Yeah, and he is a pediatric and adult endocrinologist. Awesome, awesome. Awesome.

Scott Benner 1:28:40
That's terrific. Okay, well, Clara, I really appreciate you doing this with me. Thank you so much for sharing your story. All right. Hold on one second for me,

summertime is right around the corner, and Omnipod five is the only tube free automated insulin delivery system in the United States, because it's tube free, it's also waterproof, and it goes wherever you go. Learn more at my link, omnipod.com/juicebox, that's right. Omnipod is sponsoring this episode of the podcast, and at my link, you can get a free starter kit. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at Omnipod, Comm, slash Juicebox. I start every day with a delicious drink of ag one, and I'm ending today's episode by reminding you to go to drink ag one.com/juicebox. Subscribe today to try the next gen of Ag, one, if you use my link, you'll also get a free bottle of Ag, d3, k2, that freaks of nature, Sun stick a 30 day supply of Ag, one, five, free travel packs. I mean, there's so much in it. Just go look drink. AG, one.com/juicebox, you. You us. Med, sponsored this episode of The Juicebox podcast. Check them out at us. Med, Comm, slash Juicebox, or by calling 888-721-1514, get your free benefits check and get started today with us. Med, hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast.

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Silvia, 45, moved from Bulgaria to Canada in 2016 and is now a trusted group expert on the Juicebox Podcast Facebook page.

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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
Friends, we're all back together for the next episode of The Juicebox podcast. Welcome.

Sylvia 0:15
Hello. My name is Sylvia. I'm your typical Bulgarian who lives in Canada for the past nine years.

Scott Benner 0:24
If this is your first time listening to the Juicebox podcast, and you'd like to hear more, download Apple podcast or Spotify, really, any audio app at all, look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management, go to Juicebox podcast.com. Up in the menu and look for bold Beginnings The Diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. 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 healthcare plan or becoming bold with insulin. Today's podcast is sponsored by us Med, US med.com/juicebox you can get your diabetes supplies from the same place that we do. And I'm talking about Dexcom, libre, Omnipod, tandem and so much more. Usmed.com/juicebox, or call 888-721-1514, the episode you're about to listen to is sponsored by tandem Moby, the impressively small insulin pump. Tandem Moby features tandems, newest algorithm control, iq plus technology. It's designed for greater discretion, more freedom and improved time and range. Learn more and get started today at tandem diabetes.com/juicebox the show you're about to listen to is sponsored by the ever since 365 the ever since 365 has exceptional accuracy over one year, and is the most accurate CGM in the low range that you can get ever since cgm.com/juicebox

Sylvia 2:14
Hello. My name is Sylvia. I'm your typical Bulgarian who lives in Canada for the past nine years,

Scott Benner 2:22
are there a lot of Bulgarians living in Canada?

Sylvia 2:26
I don't think so. Bulgaria in general, is very small country. We have I think the biggest population in Canada is in Toronto. Here I've met some Bulgarians. They're not that many, but enough to have some friends. You know, how

Scott Benner 2:44
did you make it there? Like, nine years. I mean, how old are you now?

Sylvia 2:47
Oh, I'm 45 I was 36 it was 2016 and it's a it was a huge surprise for me. I I've never planned to live anywhere but Bulgaria. How'd that happen? Of course, everything is my husband fall. It's your

Scott Benner 3:08
husband's fault. Yes, of course, you got a

Sylvia 3:10
job. I will never choose, I will never choose to come to North America from Southern Europe. You know?

Speaker 1 3:17
Why? What do you miss about home?

Sylvia 3:20
People, the weather Bulgaria is very different than like everything is very different, and it was quite adjustment. The other thing, I never studied English in my life, and I'm very social person, and when we came for me was very hard because I didn't know anyone. The language was a huge barrier, you know. And I like being surrounded by people, chatting with people, and it was very hard. The beginning. The weather is very different, the winters are very different. I'm coming from a very different upbringing, so I had to adjust a lot.

Scott Benner 4:03
Do you think you'll stay in Canada forever? Or do you think, Oh no,

Sylvia 4:07
no, no, no, no, no, I cannot. I cannot imagine myself being here like old person when my kids grow up. If they're not around me, I don't see a reason to stay.

Scott Benner 4:22
You're gonna bug out. How many kids do you have? Two, two,

Sylvia 4:26
uh, boy, not uh, 10 years old already, and a girl, 15 years

Scott Benner 4:31
old. Okay, and so, oh, he was born here, or the were they both born in Bulgaria?

Sylvia 4:36
Still he was, he was exactly one year old, and my daughter was six when you got to Canada, yes, yes. When we got to Canada, yeah, yeah.

Scott Benner 4:45
Does your husband know that he's ruined everything, or do you

Sylvia 4:48
always, yeah, yeah, I always

Speaker 1 4:50
try to remind him, yeah. You don't want him to be too comfortable.

Sylvia 4:53
Yeah, yeah. He's amazing guy. I love him, but you know he has to know. I. But don't get me wrong. I don't want people to get me wrong. Canadians are amazing. Like in the movies, we've been watching a lot of American movies, and the Canadian guy is always this nice guy. They are like this. I love them, but coming at the age of 36 you have your own education somewhere else. This is not your language. It's not your culture. You build everything for 36 years, your family is there, your friends are there. It's hard, but the people are lovely, honestly. The people are really, really lovely. Were

Scott Benner 5:35
you inland in Bulgaria? Were you on the ocean? Like, where did you kind of where did you live?

Sylvia 5:41
Okay, I was born and raised in a town close to the Black Sea. I miss them. I miss the sea tremendously. I cannot tell you how much I miss the sea, the beaches, yeah, the mountains, because we live in Ontario. Ontario, pretty much is flat, and I miss the mountains as well. But when I turned 17, I moved to the other end of the country, with more mountains, to the capital of Bulgaria, Sofia, and there I studied. I met my husband. My kids are born there in the capital we live there, yeah, long time he just

Scott Benner 6:23
gets a job that moves you that far.

Sylvia 6:25
He said, at one point, he said, Let's go to Canada when, when I gave birth to my daughter, and he didn't like the situation there for kids, the education, you know? And he said, Let's try Canada, because he felt that Canada has this more close to the scandinavius countries education,

Scott Benner 6:48
and that's what he was looking for, for them, and also

Sylvia 6:50
his job, his job, he couldn't have the the growth, professional growth that he

Scott Benner 6:57
has here. I see, yeah, and you have type one or your kids,

Sylvia 7:02
my son, my son, who is 10, got diagnosed in Canada, 2022, he was seven, okay, and that was another really hard thing for me, because the Healthcare System is very different, and I'm alone with anyone. And you know, it's very different. It's very different experience.

Scott Benner 7:28
Your English is terrific, but how long? Thank you so much. You're welcome, but how long did it take you to get to that?

Sylvia 7:33
To be honest, I'm not satisfied where I am, because I love languages. And honestly, I don't know. I don't know. I still have to work a lot on it. We came 2016 I pushed myself to go out and talking with people. I watch movies. I said to myself, Okay, Sylvia, you're not gonna watch Bulgarian movies anymore. You're not gonna read books in Bulgarian forget about it. You're gonna read everything in English, you're gonna listen everything in English, and here we

Scott Benner 8:04
are. Yeah. How long do you think it took you to be conversational?

Sylvia 8:07
Conversational like small talks the couple of months?

Scott Benner 8:13
Wow, did you speak any English when you got there? No, no, I

Sylvia 8:17
wouldn't say. I wouldn't say. No, no, that's crazy. Reading, reading, yes, reading, yes, reading, writing, because you have time when you read and write, you have time to assimilate the world. You have time to correct your mistakes. The hard part, let me tell you what the hard part is. I think in Bulgarian now, when I speak with you. I'm thinking in Bulgarian, and I have to speak right away in English. And the other thing, you cannot translate literally Bulgarian to English, because the meaning is not the same.

Scott Benner 8:54
So you, in your mind, dream up how you feel, and then you translate it on the fly into English.

Sylvia 9:00
Yeah, yeah. And you if, if you say something incorrectly is out there. It's not like when you write, you know, you have time to correct yourself. Sure. And it's very hard, because now, while I'm speaking in English, I still think in Bulgaria,

Scott Benner 9:17
yeah, very hard. I've heard other people talk about that? Oh,

Sylvia 9:21
so hard. And pronunciation is different. Pronunciation is very different.

Scott Benner 9:25
Okay, how does that affect the diagnosis of your son? Like when you're in the hospital and they're speaking to you, do you feel like you're understanding

Sylvia 9:32
everything? Yes, I did understand everything, but I was kind of lost, because my idea in my perspective of health care and how the things working was different. Do you want me to share with you? Yeah,

Speaker 1 9:51
okay. Are you nervous? Wait, Sylvi, are you nervous?

Sylvia 9:53
No, no, I'm not nervous at all. I just want you know. I just want people to enjoy this conversation. Question, like, I enjoy every episode of the podcast,

Scott Benner 10:03
yeah? That. I'm sure they will. Yeah, I'd like to know more about it.

Sylvia 10:07
Yeah, awesome. So when we decide to come to Canada, because I've heard a lot of stories about hospitals and emergency how you stay for hours there, I said to myself, Okay, I'm going to bring everything I need so we avoid hospitals. Okay? So I brought glucometers, I brought blood pressure meters, medications, everything I could bring. And for six years, we never went to hospital or we never needed medical attention, and I was regularly checking my daughter blood sugar, because I have two main fears, anaphylaxis and decay. Since I'm a parent, those two are my main fears. And one Saturday, I remember this also. The other thing is important to know, I am one of those parents that constantly reminding their kids to drink water. For me, water is very important. I love water. They have to drink a lot of water, and I'm all the time, drink water. Drink water. And one Saturday morning we were about to go somewhere. The weather was nice in October, and my son suddenly, he said, Mom, you're gonna be so proud of me. This week, I refused my water bottle at school two times, and I said, Oh, okay, let me check on he starts screaming. He starts screaming. And was like, buddy, it's two seconds. Let's check it. Probably it's nothing, but let's check. I convinced him. I checked and it was 2424

Scott Benner 11:54
Yeah, you had a blood glucose meter in the house, just in case, yes, yes, yes. Just in case, yeah. Why did you know so quickly that thirst was a precursor for diabetes? When you think of a CGM and all the good that it brings in your life, is the first thing you think about. I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a doorframe, sometimes it gets ripped off. I love that the adhesive kind of gets mushy sometimes when I sweat and falls off. No, these are not the things that you love about a CGM. Today's episode of The Juicebox podcast is sponsored by the Eversense 365 the only CGM that you only have to put on once a year, and the only CGM that won't give you any of those problems. The Eversense 365 is the only one year CGM designed to minimize the vice frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping, you can manage your diabetes instead of your CGM with the Eversense 365 learn more and get started today at ever since cgm.com/juicebox one year one CGM. Let's talk about the tandem Moby insulin pump from today's sponsor tandem diabetes care, their newest algorithm control iq plus technology and the new tandem Moby pump offer you unique opportunities to have better control. It's the only system with auto Bolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options. Tandemobi gives you more discretion, freedom and options for how to manage your diabetes. This is their best algorithm ever, and they'd like you to check it out at tandem diabetes.com/juicebox when you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's going to help you learn about tandems. Tiny pump that's big on control tandem diabetes.com/juicebox the tandem mobi system is available for people ages two and up who want an automated delivery system to help them sleep better wake up in range and address high blood sugars with auto Bolus. Okay,

Sylvia 14:16
let me tell you, after I graduate from my master degree in social work. I got bored because I was 23 and I wanted some medical education. I didn't want to be a physician or doctor any kind. I wanted to be close, more close, to people. I'm very interested in people, and I enrolled in a nursing program for four years because it's shorter, the shortest medical, you know, program, and that's

Scott Benner 14:49
how, that's how, wow. That's crazy. How does that go then, like, once you realize blood sugar is high, did you make the leap? Did you say this looks like type one diabetes?

Sylvia 14:59
I was sure. I didn't say this. This looks like I was sure, okay. Let me tell you something really crazy. Since my son Kala, his name is kalayam, but we call him Kala, since he was born, I knew something will happen with this guy. Honestly, I just

Speaker 1 15:18
knew you had a bad feeling. Yes,

Sylvia 15:21
since he was born, I knew I didn't know why, of course, like every I don't know parent probably I thought

Scott Benner 15:29
cancer, really, it was in your head. He was going to get cancer from what

Sylvia 15:33
age? No, no, no, not cancer, something, something. But my, my main fear was cancer, okay, but I knew something will happen. I don't know why. Don't ask me,

Scott Benner 15:44
why other people in your family sick? Did you grow up around illness? No, no.

Sylvia 15:49
My dad died when I was 14. But I'm not anxious. I'm I don't do anxiety. I don't have this feeling with my daughter. I didn't have it with my daughter. I don't have it with anyone who specifically with my son? No, jeez. Very strange. No, no, very strange, I'm telling you. Oh, man, strange. So even

Scott Benner 16:10
it took you by surprise feeling that way,

Sylvia 16:13
yeah, because from I always, not always, but I try to find reasons behind stuff. I'm not like all this happened, because the universe, you know, I try to find reason for this. I I can

Scott Benner 16:29
interesting. That's very interesting. Okay, so do you take him to a doctor or to a hospital?

Sylvia 16:35
That's the thing. The guy is good. He's happy. He's healthy, okay, I know what is happening. He's stable. I can see him, okay. So I thought back home, it was Saturday, right? And I said, I'm not going to emergency. We're gonna stay there for hours, seven, eight, yeah, back home, what we will do? Kids have pediatrician. You also have their personal number. You can always call them, but usually you will call them on Monday, and they will give you appointment. You will go right away. They will prescribe you stuff, or you will see endo immediately, you know? And I thought the same, it's Monday, Monday. When Monday comes, I'm gonna call on the family physician. He will, and we will go from there, yeah, but my husband will get very worried. And he said, Sylvia, let's not go anywhere. Let's call. He has from his insurance this online. Yeah, you know,

Scott Benner 17:33
yeah, you call, you do a consult, like through video chat or something, yes, yes, yes,

Sylvia 17:38
yes, you call nurse practitioner. Then I said, Okay, let's let's call. And when I said to the guy, and he said, Go in the emergency immediately. And I said, I'm gonna wait for hours. He said, the second day here this blood sugar, they're gonna admit him immediately. Yeah, no, yeah. Seven hours. Seven hours we were staying in a waiting room with coughing kids, vomiting kids, my son, who is super chill guy, the chillest guy ever get nervous. Seven hours, Scott, because he was,

Scott Benner 18:21
he looked okay, right? He was okay, yeah. So everything you thought was gonna happen happened now, everything when you get through that process, because it sounds like you're ready for it in your mind already. You get all through that the hospital, how do you start? You know what I mean? Like, where do you dive in at we were

Sylvia 18:39
in the hospital. I saw that the nurses there have absolutely no idea. He was very nervous. Why? Because when the doctors came, first doctor that came, he said he has type one. I said, Okay, are you gonna start him on insulin immediately? He said, Yes. And then they told him, okay, buddy, don't worry about it. You're gonna live your normal life. You're gonna eat cereal like a champ. My son doesn't need cereal. And my son started getting panicked, and they asked him, What do you want for breakfast? And he said, salmon and eggs. And they said, no, no, no, you cannot have someone and next so told him, You can have everything you want, and next thing, you cannot have

Scott Benner 19:28
the thing you want. So he can have cereal, but he can't have eggs and fish.

Sylvia 19:31
No, no, he can in he I will never Scott. I will never forget his look. He looked at me and said, Mommy, do I have to start eating cereal because of the diabetes. Oh my gosh. And I said, No, no, no, no no, this not happening. He's gonna eat no, no, no. He has to eat this and this carbs immediate among like a crazy, crazy amount of carbs that he never eat, even in a day back then. Now, it's different story. But.

Scott Benner 20:00
Hack again. Were they going to put him on regular? Mph?

Sylvia 20:02
No, no, no, no, no,

Scott Benner 20:08
but they couldn't figure out how to eat eggs with that.

Sylvia 20:10
Yeah, I said, guys, it's 20. You know, it's 21st Century. Come on, we're flexible. We can eat that was the first, the first thing that pushed me to want them to discharge us immediately, as fast as possible, his endo team, let me be clear. After that, they introduced us to his endo team. They're amazing. But when we were in a pediatrician Ward one time, even the nurse was about to give him the wrong dose insulin. And, you know, I had it enough. And I said, Please, please, just discharge us. They said, Okay, let me call your pediatrician that gonna follow your type one. And she came. And before she came, I said to my son, you know what? They wanna know. They wanna be sure that we are capable of doing this at home. Okay, so look confident. And that was also crazy. She came. She came, and the guy and the nurse gave me the pen, and she said, I don't know, whatever unit and my son grabbed the pen and administer insulin in his leg in front of everyone and his pediatricians. Oh, okay. This guy is ready. This guy is ready. The mom looks. She knows what she's doing. Okay,

Scott Benner 21:34
that worked. Huh? That what? That got you out of there? Yes,

Sylvia 21:38
yes. But they said you have to come next day, early in the morning for some education. I said, No problem.

Scott Benner 21:46
Okay. Now, did you find the education helpful? Oh,

Sylvia 21:50
thank you so much for reminding me very important point there in the room when I realized they don't know much, and I'm by myself. I know diabetes, I know insulin, but I don't know my son diabetes, right? I start immediately searching for information. That's how I find you. I start listening to the podcast immediately. I didn't join the group immediately, but I I found the podcast. I went on Amazon and just type type one books. I ordered first five, six books, and I found the podcast. I desperately needed education more than what they can give me.

Scott Benner 22:33
What made you think at the hospital that you weren't getting good information?

Sylvia 22:37
They didn't look confident, really, they didn't look confident and flexible. And even Scott, even if they know about type one, I know about type as well. I knew as well. They don't know my son, they don't know our lifestyle. They don't know nothing, right, how I can rely on them. And the other thing, the next day, when you ask me about the education. Next day we went. His team is district dietician, nurse and pediatrician. That's his team, lovely people and very honest, and honestly, they do everything that I want them to do. And his pediatrician, the first thing she said to me was still video, after a couple of months, you're gonna be smarter than me when it comes to diabetes. And then that was the slap for me, a very nice slap that I am. I am the person. I'm the person that has to be educated. Yeah, I am the person that has to know till this day, I constantly thank her for this, because then I realized it's on me and

Scott Benner 23:49
you didn't feel overwhelmed by that. It was, it was empowering. No, never, yeah,

Sylvia 23:53
exactly. That's who I am. I have a challenge. I feel motivated. I got you. That's me. I don't dwell. I don't get stuck like things like, Why me? Why my son? Can I change it? I can't. So let's move on. What can we do this and this? Let's do it. And there in the room, in the hospital room, I knew that I have to educate myself. That's

Scott Benner 24:23
it. The rest of the people in your family have a similar mindset. How about your son? Diabetes comes with a lot of things to remember, so it's nice when someone takes something off of your plate. US med has done that for us. When it's time for art and supplies to be refreshed, we get an email rolls up and in your inbox says, Hi, Arden, this is your friendly reorder email from us. Med. You open up the email. It's a big button that says, Click here to reorder, and you're done. Finally, somebody taking away a responsibility instead of adding one us. Med has done that for us. An email arrives, we click on. Link, and the next thing you know, your products are at the front door. That simple, us. Med.com/juicebox, or call 888-721-1514, I never have to wonder if Arden has enough supplies. I click on one link, I open up a box, I put the stuff in the drawer, and we're done. Us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and the Dexcom g7 they accept Medicare nationwide, over 800 private insurers, and all you have to do to get started is call 888-721-1514. Or go to my link, usmed.com/juicebox, using that number or my link helps to support the production of the Juicebox podcast. No, no,

Sylvia 25:52
that's me. That's me, and I want to teach my kids exactly the same. I want my kids to have my mindset because life never gonna be easy. If you expect life to be easy, the HAP your happiness and your comfort to come from outside, you're never gonna be happy, never kind

Scott Benner 26:18
of create that for yourself through what? What creates the comfort,

Sylvia 26:22
you know? What creates the comfort? Okay, I'm 14. My dad is the most energetic, the most active, the most cheerful person I know, the last person I could have imagined death, you know? And when my dad died, and I was 14, and I saw this, one of the first thing I thought to myself was, there is no order. If this guy can die at 36 unexpected, everyone can Okay. And then I start living honestly when you realize your own mortality, when you realize that tomorrow is no guarantee, when you realize that there is no future. We all think that there is future, but who can say,

Scott Benner 27:11
yeah, how old were you when your father passed? 1414? That's 30 years ago now.

Sylvia 27:19
It was 94 it was 94 Yeah, 3031, yeah, 3031, yes, I'm 45

Scott Benner 27:28
he'd only be in his mid 60s right now, he

Sylvia 27:30
was 36 and now he would be 67 Yeah, that's crazy. It is crazy. But this changed me. This changed me tremendously. And since day, since then I'm not wasting time getting stuck of negative thinking. Yeah, what's the point? If something will have helped me, if some thoughts will help me, okay, but if the feeling is not helpful, why? And

Scott Benner 27:58
you're able to get past it and using that knowledge of that tomorrow's not guaranteed. Yes, that's the one. That's that thing that just powers you through all this.

Sylvia 28:08
It is not many people say that, but they actually do not really realizing it. Yeah, that today may be your last day. Why to waste it? Of course, every one of us can find reasons to be miserable, everyone, but every one of us can find also reasons to be happy and motivated and joyful, right? So it's your choice. Life's not gonna be easy. No one, no one promise you that, and that's how I raise my kids, and probably Scott, to be honest, that's why color color. It's not taking this diagnosis like something very surprising or shocking. I speak with them, since they're very little about stuff like this, yeah. So

Scott Benner 29:00
he just accepted it and kept moving.

Sylvia 29:02
Yes, he accepted it. When he has bad days, we talk about it, we laugh, we cry, but we move on. Because there's, there is no point really. There is no point to to waste your time. Life is short. Life is short. The most certain thing is that all of us gonna die. And this is not depressing. This is this is encouraging that you are here. Enjoy

Scott Benner 29:28
it. Yeah, I feel the same way. I know I speak about it differently. I say things like, I'm almost dead. I'm 232, thirds the way through my life, things like that. But I still feel about it the way you do. I'm not bemoaning the fact that I'm getting older and being like, oh, it's almost over. I only have a third left, or whatever. I think it's beneficial to remember that this is not an open ended trip, you know, like it is going to come to an end at some point.

Sylvia 29:52
And that's amazing. And that's yesterday my son, Carla, we talk a lot about the other thing i. Let me tell you about Bulgarians. We don't do small talks. We go deep, like on a daily basis. So yesterday, we were talking with Carla about something, he said, and he said, Mom, you I don't get why some people want to live forever. This is so frightening for me. And I said, yes for me as well. She was like, forever. Can you imagine mom forever? Can you imagine the eternity? It's frightening. Who wants to live forever?

Scott Benner 30:29
So, yeah, I have to tell you, I would like to live forever.

Sylvia 30:32
Oh, really, my mom as well. Honestly, I don't get this, but that's okay. I

Scott Benner 30:36
feel so busy that okay. I would love to have more time to do more things Now, having said that, if you gave it to me, I don't know, maybe 100 years from now, I'd think like That's enough, exactly, yeah, but I at the I guess maybe I would take that more as an inclination for me to say that I just don't feel done at this point I

Sylvia 30:58
get it. Yes, okay, I get it, but forever is too long.

Scott Benner 31:02
Yeah, probably for sure, I would imagine at some point it would just be like, What am I? I've run out of things to do, exactly like those vampire movies, you know, where they're just like,

Sylvia 31:16
we don't do boring.

Scott Benner 31:18
We can find more to do after a while. But that's an interesting way to think about it too, because sometimes I find that with music, or the other day, somebody asked me what my favorite movie was, and oh, and I told them. And then I thought, like, I wonder how many more times I'll see that movie? Probably not that many more times. And like, Am I really motivated to see it again? Like, now I've seen it already, but when I was younger, I'd watch it more frequently, because he'd be like, This is awesome. I want to see this again. And now it feels more like, well, I've seen it. I'm good, yeah, yeah,

Sylvia 31:47
exactly. And at some point, if you live forever, this will happen with everything, and you will want to die, like,

Speaker 1 31:55
I can't do this anymore.

Sylvia 31:57
I cannot. Yes, absolutely.

Scott Benner 31:59
That's so funny. I'm watching that happen to my wife right now. We've only been together for 30 years. She's like, I think I can't do this anymore.

Sylvia 32:07
I may. Oh my gosh, I'm with my husband. We lived together for 27 years. When I met, I'm like, 27 the rest of our lives, and what we feel we live long like my grandparents and my great grandparents

Scott Benner 32:28
and I got lunch together today, and we watched, we watched this, this very older, very much older couple pull up outside of the restaurant. Oh, and they're, you know, they he gets out. He's driving. She gets out. She's in the passenger seat. Now. She has one of those canes that has four feet on the bottom of it, and she gets out of the car, and she just walks like in a complete circle, like she's not sure if she wants to go to the front of the car to go up on the curb, or if she wants to go around the back of the car and go look for, you know, a ramp to get up or not. And she's like Arden said she's spinning in a circle like a dog. I can't decide where to lay down. And she's spinning a circle. And I went, and I go, Oh, she's gonna go, she's gonna go to the back of the car. And as we're watching all this happen, the guy is watching her, the husband, and he just goes, I'm walking inside, and he just walks away. She's making her way. She doesn't need his help. Like, I want to be clear, it's not like she was waiting for him. For him to help. Yeah, but he just watched her spin a couple times, and he was like, I've seen this show already. And he just, he just took off, making me think about that. You know what's freaking me out? Like, I know you were nervous about your accent.

Sylvia 33:36
Yes, very much. You should. I don't like it. I don't like it. You shouldn't be, yeah,

Scott Benner 33:40
it's really interesting for me, because you and I do speak pretty frequently through writing, you know, like, and we've again, it's not that we haven't seen each other like, I guess we haven't really told people yet, but like, you fill one of the group expert roles on the Facebook group. Somebody is awesome in there. You guys might know her. I communicate with you mostly through writing. Yes, yes, you're very like, smart, sarcastic, thoughtful lady. You know what I mean and like, and I know that's strange to say that when you have an accent, my brain doesn't expect that.

Sylvia 34:13
But you know what? From now on, everyone that hear this episode when they read my comments. Now, in

Scott Benner 34:23
my accent, it's gonna sound like Rocky and Bullwinkle to them. No. Do people know that reference? There's no way, right? I don't know. I don't know it. You don't know it either. No, all right, in the cartoon Rocky and Bullwinkle. Now, Rocky was a squirrel, Bullwinkle was a moose. There was also two spies, Natasha, and I forget the guy that she was with, but you're definitely gonna sound like Natasha to people who know Rocky. Yeah, this is from 1959 so all of my references are of the most cutting edge, always,

Sylvia 34:58
and my and also. Coming from different parts of the world. So my cartoons were different. Were

Scott Benner 35:04
definitely different. How about my references are coming from 11 years before I was born, which should show people how it's only been a couple of generations where you've really had a lot to watch on television or like to consume any way you want to. As a child, I was watching a cartoon that was already 11 years old because that's what was available. You know what I mean? Like, older than that. I wasn't watching Rocky and Bullwinkle when I was first born. That thing was probably 15 or 20 years old by the time I was watching it, and I was thrilled.

Sylvia 35:34
Yeah, when I was a kid, we had, I think only one time per day you can watch some cartoon and that's it. Yeah, yeah. I

Scott Benner 35:45
used to have to get up at 6am or 530 on Saturday morning to watch Mighty Mouse. And that was, it's ridiculous. You were like, exhausted, like, sitting there, just like, and then the cartoon was over, and you're like, I guess I'll see if I can live another week and do it again. Yeah, same thing. Same, same. Now you, you guys are all just like going to YouTube and just typing in wherever

Sylvia 36:07
you want, awesome. Yes, yeah. Now it's awesome. Now I love watching cartoons with my kids. What do you

Scott Benner 36:13
think about the way content is now? Like, so you found the podcast, and then I'm going to put words in your mouth, but I feel like I know it helped you with the diabetes and

Sylvia 36:20
everything. Tremendously, tremendous. I started immediately. I started back then. I was working with one of my friends. Most of the time. I was stay at home, mom, the kids grow up. And I said, life is amazing. Kids are independent. I'm gonna start working again, and I start helping one of my friends. He has a dental clinic close to me, and I start helping him. It was awesome. And color got diagnosed, and me and my husband, we don't have nurses at school, and me and my husband decided that there is no reason for me to quit my job, right? And he said, I'm gonna cover Carl at school, and I was working. That was the most busy three months I was working. I was listening the podcast like my son. Life depends on it. Honestly, two, three episodes per day. I was working all day and taking care of everything. You know how it is, it helps me a lot. I was listening to the management episodes, of course, because I just wanted to figure it out. I want him to have a healthy, long life. And I saw that I need to educate myself otherwise, and I start experimenting everything that I heard before. After three months of craziness, my husband very busy at work. He said, Honestly, I don't know if I can go twice per day forever the school. Yeah. And I said, you know why, guys, every time we take big decision, we four of us sit on the table and discuss it. And I said, guys, if you want, I will quit my job and I will stay at home and take care of everything. I think it's it's for the best for everyone, even for me, for my mental health, because it was crazy. And they said, Okay, if you want to, that's okay. And then I stay. And while he's at school, I was listening to both the podcast, so pretty quickly I educated myself with the podcast.

Scott Benner 38:39
How did you know to believe me. Like, how did you know you could trust what I was saying?

Sylvia 38:44
Okay, now you're asking a person that knew her child will have something I just knew it felt right to you absolutely. I always go like this in my life. I always follow what I feel is right. I i Don't overthink too much. I cannot. That's my

Scott Benner 39:05
your gut told you it was, it was what you were hearing, seemed bright, and you just went

Sylvia 39:08
with it. Yes, I was hearing the Yeah, it was logical, and I was testing it.

Scott Benner 39:15
Okay? So I say something, you do it. It works. You go, okay, builds a little trust, and you keep

Sylvia 39:21
going, even if it's not working. From the first time, I had specific mindset, you know that, like always, in every situation, I see a solution. I see opportunities. I don't see problems. Whenever, when something comes, I see ways to solve it, yeah, and you add that, you just add to this mindset.

Scott Benner 39:47
Okay, you think, I think like that.

Sylvia 39:49
I don't know, I have no idea how you think, but you start building the right mindset towards diabetes in me and I. Said, Okay, I like this. It suits me. So I continue, and I listen to the podcast religiously till this day. Yeah, thank you. But now for fun,

Scott Benner 40:10
I appreciate that lady this morning told me, what'd she say? I'm not I don't make the titles the right way. She said, the title

Sylvia 40:17
amazing. One of my favorite things, your title. I love it. I

Scott Benner 40:22
actually responded back to her, and I said, Listen, like, totally serious, like, pick a couple of episodes that you really like, and then you come back to me, tell me a, what was the episode about, and B, what would you call it? I didn't just start calling them crazy. I did it because, you know, we have these longer conversations. And sometimes there's four or five different topics that get brought up. Like, I've just always thought, like, if I picked one of them, you know, like, I mean, imagine if I called this episode, you know, I don't know she's from Bulgaria, and then people wouldn't hear and like, they'd be like, Oh, that's what this is about. But it's not, it's one of the things we spoke about, you know, and especially with the diabetes stuff, you might talk about three or four different kinds of ideas. I can't just call it this one's about pre bolusing, when we actually spoke about five other things, because then you'll think, Oh, I understand pre bolusing. I don't need to listen. I can't really, can't really win, you know what I mean? So

Sylvia 41:18
I don't know. I like the title, so I like them very

Scott Benner 41:22
much. Yeah, I appreciate that very much. Now, do you think that that's cultural? Do you think, like, if I went to Bulgaria, I would be a huge hit, or do you it's just you specifically,

Sylvia 41:30
yes, yes. Some people will say, Oh my gosh, this guy pretends he knows everything. Who is? This guy doesn't have education even. But I think most of the people will like you, because when you talk about life and stuff, you sound like Bulgarian you're very honest, you're very straightforward. You don't sugarcoat, we don't sugarcoat, we don't sugarcoat, we're very honest. You have amazing sense of humor.

Scott Benner 42:00
Thank you. I appreciate that. I know it's funny because I know you to have a very good sense of humor, but mostly from writing that's interesting. It is really interesting. My favorite quote from Natasha in Rocky and Bullwinkle is she once, she once said brainwashing brainless moose was not such a hot idea. And, my God. If it was up to me, that's what I would call this episode. But even I put myself in check, so

Sylvia 42:29
I'm interested. I'm interested. I'm not gonna give you ideas very, very, very interested.

Scott Benner 42:36
My expectation is, is that I think some people find their way to it, and they're not really, they're not really podcast listeners, right? They're not a person who loves sitting and listening to a longer conversation about something. I

Sylvia 42:48
don't listen to podcasts. That's the only podcast I listen. I don't listen. I'm not a podcast person. I

Scott Benner 42:55
like books. You might like a good podcast. I think maybe there's just a lot of bad ones. No, no, I just

Sylvia 43:00
don't like I just don't like I just don't listen to podcasts. When I saw when I was looking for something to I found, I found books to read, okay, but now I wanted also to listen to something right when I was driving my car. But I wasn't a podcast person, so for me, it was very hard but, but I said, Okay, let's try it. Let's try it. Then I started, I think the first episode was about basal, because I really wanted to figure it out what the basal is doing. And from then, I just continued listening. I'm

Scott Benner 43:40
glad you. Yeah, you're a huge help in the group. I can't thank you. Oh,

Sylvia 43:44
thank you, almost. Oh, no, thank you, please. I owe you. I want you. You know,

Scott Benner 43:50
no, why would you say that? I You're definitely doing me a favor. Why? Why do you owe me?

Sylvia 43:54
No, no, no, Scott, listen, listen. You are very, very, very important part in our type one journey with you. I know myself, either way, I would have found what I need to learn, but you made it easier, faster, enjoyable. Which is not a little you know, the other thing you gave me, you gave me community. You gave me friends I never thought in my life that I will love with all my heart, people that I've never met in person. Yeah, even my kids are making fun of me because I'm like, you cannot communicate. You always communicate virtually. You have to go out. You have to see the people. You have to watch people in their eyes. You know. You have to shake their hand. Yeah? You. But now one of my best friends, huge supporters, are people I've never met in my life. In person.

Scott Benner 45:10
That's just from the from the Facebook group, from

Sylvia 45:13
the group, the group experts, yeah, I don't know how you did it, but you get together people that are fabulous, it's a very good group of people. When you see them in the group, you know we are in the group. We have to be how should I say? You have to consider that's a big group. You have to be careful with your words, especially me, because most of the people are from North America. I really try to be considerate, because we different, yeah, and when you see people in the group, they're nice, but I communicate with them privately, and you can imagine how really nice they are. Yeah, they're lovely. They are they are amazing. Oh, by the way, yeah, let me tell you something. Happy birthday, Cory. Oh, is it Corey birthday? Cory's birthday. This guy is amazing because of him. Now, when I hear Texas, I have very good feelings. He is such a nice guy. All of them, all

Scott Benner 46:14
of them. No, I know everybody brings something special, and they're all really like, I don't know, lovely is the best word I could think of. And well, well, well meaning,

Sylvia 46:24
yes, yes, they are. They really want to help people. They really, really care.

Scott Benner 46:29
No, I It's lovely. I really don't have to give, like, a lot of credit

Sylvia 46:33
to Isabel. Oh, Isabel is amazing. Isabel is amazing human being. And sometimes I feel so sorry that nobody's I don't think, not nobody, no, I don't think most of the people realizing what she's doing behind the scenes. She's awesome. Isabelle. I love I love

Scott Benner 46:51
her. I think that I do things the way you do a little bit like, on vibe, you know, like, like, I've sent names. Like, there are people who are group experts. Now that I just said Isabel, I'm like, This person would make a good group expert. And I know she's like, Why do you think that? What did you What did you read? I'm like, and I don't have the same like, I don't have the same way of going through it that she would, right? But at the same time, she keeps you guys all cohesive, like she gave you that little group where you guys can talk. She said, it's I'm not in it on purpose. Like we nobody wants you to feel like I'm watching you. But the way she describes, like, the community that you guys have just in there, she said, It's irreplaceable, amazing. I was gonna say like, you know, so I just kind of ran away. I'm like, I think that person would be good. This person, like, strikes me the right way. But what else does she do besides this amazing job? She picked some of you too, don't worry. But the thing that she she does, where you said people might not know, is she keeps me focused on things. Like she'll say, Hey, did you see this? Or people are starting to fight about that? Have you noticed that this topics become more popular recently? She keeps me focused on that stuff. She makes sure that I see when people are thanking me because I don't see it, although I acts are crazy, so I can't, I can't keep up with them. And so she'll be like, Hey, make sure you see this. This, this, here, this. But the other thing is, I mean, the bold beginning series really has a lot to do with Isabelle. Like she's the one that said that. I think there needs to be something in between the pro tips and the defining diabetes, and that's how we got to the bold beginnings. Like, you know, or, you know, a lot of the other stuff that we work on, like, when you hear Jenny and I talking through topics, a lot of times, those topics were pulled together by Isabelle, yay. There's a lot that goes on amazing. Like you said, the people listening would know about but and it's all just volunteer. Everybody's just volunteering their time. It's love. It really is something.

Sylvia 48:47
They really care Me too, me too. I'm not as I'm honestly, I don't think my experience is if with a great value still, because I'm, you know, three years, not there's no three years even we do really care about people. We really want people to succeed, to be encouraged, to be motivated and to be healthy and happy. We really do care about

Scott Benner 49:15
that. Well, that's the skill that is to have that desire for other people without wanting anything in return, yes, and then being able to communicate it in that setting. What

Sylvia 49:27
do you mean? What? Wait, wait, wait. What do you mean? Without wanting anything in return? What are you not getting? Anything? I've received so much. Oh, no, no, no, no, I've received so much. This community is everything for me, everything. I don't

Scott Benner 49:43
want to speak out of turn. I don't want to speak for somebody. But I think if you asked Isabelle, she'd say that she's doing that for me, that she wants the thing that I'm doing to succeed because she sees it helps people, it helped her, and she's paying me back in her mind. Does that make sense? Yeah. Yeah, yeah. But what are you doing? Who are you trying to say, thank you to you. Is that weird?

Sylvia 50:06
The most No, no, no. To you, the most and to you, thank you. You were the first. It's it, you know, after that, thank you for all my friends that are the group experts and we have our private conversations. They're a huge part in my life. For me, it's great pleasure and honor to be part of our community, to meet new people, if I can give for example, I'm not a huge expert when it comes to palm, when it comes to other details, you know, but if I can give emotional comfort, at least to some people, for me, that's huge, because it breaks my heart when I see especially caregivers who feels guilty? Yeah, guilt is absolutely useless, feeling get rid of the guilt. No one is guilty of anything. Everyone is doing their best, and many times those, some of the caregivers are being criticized because someone choose another way of management, the other one choose other. And there is some tension. I really want to give comfort and love to everyone, because all of us that we are doing our best, all of us love our kids. You know,

Scott Benner 51:38
somebody told me recently that that I've fomented a toxic positivity feeling in there. And I don't agree with that. Toxic positivity being so positive, it's not good, I guess is the idea of toxic positivity. But I don't think it's just, I don't think it's just positive for the sake of being positive, yeah, which even that is a strange thing to be upset about. But I think it's a place for you.

Sylvia 52:01
No, no, you can be either. I think this, this person is misunderstanding. Okay, you can take me as an example. You can be positive, and you can decide to focus on the good, and at the same time, you can be fully aware of all the bad stuff that can happen. Yeah, my son is 10 years old. He's fully aware what type one is. He's fully aware what life is. He's fully aware what death is. He's fully aware what hypo is and DKA and stuff like this. But he choose to be happy a carefree kid, I'm the same. Yeah, this is cultural for you, right? Yes, yes. We talk about this. You You're born and you die. That's part of life. There's nothing depressing, nothing dark in it. It's life. It's it's wonderful how you can enjoy your life if you, if you, you know you cannot realize that it's short, how you can enjoy it to the fullest, how you can enjoy the bird, how you can enjoy your kids laugh, how you can enjoy playing with your kids, how you can enjoy drinking coffee with your husband,

Scott Benner 53:16
that it will end is What makes it special, of course.

Sylvia 53:19
Yeah. Carpe Diem, that's it.

Scott Benner 53:23
Did I say something in an episode recently about Eastern block that made you laugh? Amazing. I love that was the context.

Sylvia 53:32
Amazing. Oh, let me tell you. So it was awesome. She said they allowed their son to stay alone for the night, and they went somewhere with her husband, but the son, he turned off the phone and stuff like this. He wasn't picking his phone. Zuska, when she came back, she said, you know, buddy, that was a test for you to show us how independent you can be. You blow it. So sorry. You cannot stay, you cannot go to sleepovers and stuff like that. And you said, can you be less Eastern block in this sentence? You know, no, you cannot. That's how we've been raised. You know, it's, it's very different. It's very different.

Scott Benner 54:19
There's a tiny difference between like the I think there's a way you say what you say, and then I've heard other people lament, well, you know, when they start talking about like life is finite, they say it almost like it's a sad thing, but you don't, it's not a sad thing, too.

Sylvia 54:33
It's wonderful, guys, it's amazing. Yeah. Oh no. Here people find this shocking. My kids, for example, when color, color, have bad moments. Usually, this is when we change his pump. He hated. He really hated. And for example, he will tell me, mom, mom can when we have a can when we do pump change, can I swear? Can I say the F word? Can we have a. First. And I said, Absolutely, yes, absolutely, you can do it. We don't speak like this. He doesn't speak like this. But give me a break. This kid is 10. He has a huge challenge in his life. Allow him to do whatever he want to do, to relax and make this change pump easier. One day, we changed the pump, and he said, You know what? And I said, why what? Sometimes I don't like diabetes. And I was like, there is nothing to like in diabetes. What is there to like? And we start talking about autoimmune diseases, all of them, I start talking about MS and different. And he was listening to me, and he said, You know what? I think I have one of the best out of your diseases. Yeah, that's a good one. And no one is depressed. If you see my kids, they are the most happiest, cheerful gift in the world. So you can be positive and you can be at the same time, fully aware what life is. Yeah,

Scott Benner 56:10
you can choose your own direction, to some degree, exactly,

Sylvia 56:13
focus, choose to choose on what to focus

Speaker 1 56:19
on, what the focus? Yeah, if I

Sylvia 56:21
cry, okay, I'm sad. I want to cry. If I cry, this gonna make me feel better after that. I will cry. If will make me feel worse. I will not cry. You know what I mean, whatever

Scott Benner 56:34
release. Yeah, if there's a release you're happy for, but you're not gonna you wouldn't live in the in, in in the sadness.

Sylvia 56:43
Oh no, I cannot. I just can't. Since I know myself, I cannot live in the sadness. I just can't I don't like it. It doesn't feel well, some people like it. Some people like I don't like it. I like to be happy. I like to enjoy my family, my friends, and life, everything in life, problems, challenges, good things, whatever comes that's life. Sometimes, many, often here, especially in North America, people will say it's not fair life, it's not fair or not fair or unfair. Life is life. People here expect, have this expectation of happiness, that they have to be happy, right? Nobody, promise you this, what's

Scott Benner 57:29
your line of of a good day in Bulgaria versus here,

Sylvia 57:34
like, oh, okay, okay, you wake up. Are you working or not working? Working day or weekend. Let's call it a working day. Oh, yeah, working day, okay, you wake up, you prepare for work. You go to work. Most of the people, when they go to work, they drink coffee. They go earlier so they can have a coffee with their colleagues. They chat about yesterday, about kids, about whatever they want to chat. They drink their coffee, they enjoy and they start working. After that, they have at least one hour lunch break. They go to a restaurant. They enjoy their meal. They're talking with their colleagues. After that, when they're done with their job, usually five, and they go back home, or they go out to drink coffee, or to go to a restaurant on some or some cafe. People are out. People are outside, meeting each other, talking with each other, community, family, friends are very huge thing there. What

Scott Benner 58:40
do you think the difference is, though, like, do you think everybody here thinks they're going to be rich one day, or that they

Sylvia 58:45
no. People are not outside. Scott people are not outside. I barely see my neighbors. People are not when we came to Canada, we live in, you know, this typical neighborhood, there is no people outside. We

Scott Benner 59:00
think people should just get out, look each other in the face more

Sylvia 59:03
often. Oh, people have to go out, see each other community. It's very important, even back home, if someone say, I'm depressed, there is no such a thing. You what? You're not depressed. You're alone. Whether you're go out, come with us. Go out. Let's go out together. Your friends will take you, your family will surround you, or they will say, when we were kids, teenagers, and you say to your parents, oh, I'm little bit depressed. What you're not depressed. You just have a lot of free time. Go do something. Go to your grandparents. Do something, work, study.

Speaker 1 59:41
Do you think some people could be depressed? Oh, yes, yeah, I think,

Sylvia 59:46
of course. No, listen, this is very important for me. If we have very different view of life and different things, I can still be your friend. We can argue. We can have very, very, very different perspectives. I will still be your friend. I will still like you. I have no problems viewing and understanding and seeing other people, perspective and views.

Speaker 1 1:00:18
Okay, right?

Sylvia 1:00:19
So I know probably there is the people with issue, of course, no, no, of course.

Scott Benner 1:00:24
You're not telling them to just get up and get outside, but if you're saying for most people are just sitting around going, like, Oh, this sucks, or whatever, they just need to get going and do something.

Sylvia 1:00:33
I don't know. I don't know back home is like this, yeah, I don't know how it is, right? I I've I don't know. I have no idea people should do whatever help them. This is what works for you. This is what, exactly this is what for some people, medications will work or something else, it doesn't matter. The point is to not get stuck. Don't stay stuck in this, you know, state, yeah, even so probably it's hard for some people ahead. I get that. I get that just my personality is not like this.

Scott Benner 1:01:08
I find myself feeling lucky that I don't feel that way either. You know, just the the idea that, like you can run into a problem and just kind of gather yourself and pick a direction and go again, try again, try again, try again. Like I feel lucky that that's how I feel. I certainly know people who can get run over by things and have trouble getting back up again. And it doesn't seem to me that it's because, you know, in some people's situations, it's not because they just don't care or they're not trying. I think they Oh, yeah, yeah. They have real, real reasons.

Sylvia 1:01:37
Yes. Agree, absolutely. I agree. I agree. Yes. I also have

Scott Benner 1:01:41
seen people go through tough things and do what would be difficult to describe any other way than, say, like, decide to sit in it longer, you know, and not get up and get back out and go again. I mean, have you even imagined how are your kids gonna date? You know what I mean, like, where are they gonna meet people at and, oh, you know, it's a lot, right? Like,

Sylvia 1:02:03
I know, I know it's so different, but you know, this is their, their world, their life, they will figure it out, and it's not necessarily for them. To date, I don't know. No, it's good to have, honestly, it's good to have someone.

Scott Benner 1:02:17
It's gonna be hard, because once you're out of school, I mean, that's your last chance to be around.

Sylvia 1:02:21
No, no, no, my uh, my son still not. He goes out. He's like me. He goes outside. He's very social. Has a lot of friends. My daughter is more her best friend is in Texas. Really, the only chance they they have to see each other, chat

Scott Benner 1:02:39
is through the phone. Never met a person, never

Sylvia 1:02:43
and they're very close. They're so sweet, and they're chatting every day for hours. Yeah, and I feel so sad. I feel very sad why she's at home? Because she but I don't know, because my life was very different. I will go out. I always had so many friends, and we will go out, different places, enjoying our

Speaker 1 1:03:08
time. You think the internet changed that probably,

Sylvia 1:03:11
probably kids are in Thai, kids are inside. We were out, we were outside. What about COVID? Calling each other COVID, COVID was two years, three years.

Scott Benner 1:03:22
Yeah, you don't think that like wired people to no

Sylvia 1:03:27
so I don't think so. Kids, even now, kids, my daughter aged, they're at home on their phones, probably chatting to each other. They will have some sleep overs and stuff. But it wasn't like we did it at least all day, all day outside with our friends, our parents didn't know where we are.

Scott Benner 1:03:47
I often think about that. It's that they have so many options. I think about a full day of my life when I was 15, it was, you know, get up, eat, get dressed, figure out where to go, go somewhere, get there, the person you're looking for is not there. Got to go home, you know, like, go back again. You can't call somebody on the move. You can't text them. It's some it's there were days it took three or four hours to link up with your friends, even. And then you get together, really, yeah, yeah, okay, yeah. You know, you get together, and then you're like, well, now what do we do? You throw a ball, you walk around, you go to a store, you know, blah, it's not, there wasn't a ton to do like, now they have so many options. I almost wonder if life hasn't turned into like, you know, when you click on Netflix and you spend 35 minutes going through the movies and then don't watch anything.

Sylvia 1:04:35
Oh, yeah, I barely can. Can Find a nice movie to watch.

Scott Benner 1:04:39
I think it's possible that life has become like that, that there are so many options and everything looks so tantalizing that you can't just choose one thing, so you don't do anything,

Sylvia 1:04:48
maybe. But I don't know. My childhood was different. We we were doing very interesting stuff all the time. We were 20. We were 2030, kids in that mice. Treat. It was so fun. We were playing games. We were going on a trips in the forest. It was so nice. Always something was happening. Now I don't know. I don't know my my kids childhood different, boring for me.

Scott Benner 1:05:18
Is it still that way at home like, do you think if your kids were growing up in Bulgaria,

Sylvia 1:05:23
in small towns, in small cities? Yes, capital is it's harder to just let your kids be okay. I think that reason, probably here in small towns, is different. I have no idea. Probably that's that's also a factor.

Scott Benner 1:05:42
Yeah, I imagine it might be, did we talk about anything that you want to talk about, like, Did this go in any direction the way you thought I

Sylvia 1:05:49
did? No, I didn't have any plan. I just My plan was, my motives were absolutely selfish. I just wanted to talk with you, and I wanted to go out of my comfort zone to speak in English with on a podcast.

Scott Benner 1:06:08
I mean, you did a great job. I like I said, Your Your accent is awesome. I can't believe you came over here not knowing how to speak any English and and figured it all

Sylvia 1:06:15
out. So for me with well, it was amazing. I otherwise I I don't have a chance to speak with you, and you're very important part of my life, even if you're a stranger, somehow you're very, very important part of my life. That's lovely. Thank you. I really appreciate it. Honestly, no, honestly, I'm honest. Do you

Scott Benner 1:06:37
want to ask me any questions, or do you have like, is there like? I don't want to, like, cut you short. So is there anything?

Sylvia 1:06:43
Oh, do whatever you like to do, honestly. Are

Scott Benner 1:06:47
you wondering anything? Like, what would you ask me?

Sylvia 1:06:49
Wondering? No, no, I don't wonder. I listen to you every day. In many situation, you're in my head talking to me. Don't stare at the high Don't stare at the high crush it. Crush it.

Scott Benner 1:07:04
So you hear the podcast in your mind. When you're making decisions about diabetes, your

Sylvia 1:07:08
voice, your voice is constantly in my mind, yes, and I have conversations with you, even in my mind to troubleshoot stuff. I

Scott Benner 1:07:19
don't think that's silly, like, so I'm sort of like, I'm sort

Sylvia 1:07:22
of working for me, so it's not silly, yeah, no, of

Scott Benner 1:07:25
course not, right? So I'm like, I'm like, Google in your head, yeah? Something like this, yeah, you Google, but and it answers in my voice, but more fun, more fun. And then you interact with I have an idea. I think this was what Scott would say, yes, yes. And you kind of and you come to, okay, and so tell me where, where's your son at, like, where his a one sees that

Sylvia 1:07:49
Okay. Since the beginning, his highest a 1c was 5.7 Wow. He never had a 1c higher than 5.7 the thing I want to, I really want to say this, this is, I think that's very important, especially for newly diagnosed, or especially for people that wonder if it's possible. It is possible without lows, with great timing range and with great standard deviation. It's absolutely possible. And I want to say something the at the beginning that was very important for me. People that are posting graphs this straight, not straight graphs, but these nice graphs with gentle hills, those people saved me because those people showed me it's possible. Yeah, I saw this. I saw the success. Sometimes see some people saying, Oh, these graphs are depressing me. No. People don't get depressed. Get motivated. If another human being is capable of doing this, everyone is capable. I really for sure. Honestly, I'm super honest right now. I'm not a very smart person. If I can figure this out, I don't care how long it will take me if another human being is doing this, I will get there. Yeah, so everyone will get there. I don't have time to listen, I don't have time to read. You have you're not gonna do this forever. Save some time to listen and educate and after that, it will pay off,

Scott Benner 1:09:39
right? Yeah. I always hope that what they mean is, I don't have time right now, but I'm going to, and I but I also, but I also, I mean, as the person who's making the podcast, I agree with you. I don't understand. I've said it before. I mean, happy to say it again, like you're having this major issue in your life and you're watching some you know. 50,000 people in a Facebook group go, I listen to it, and it's making sense to me now. It's all there, it's laid out, it's free, and, you know, absolutely. And then you go, I don't know, I don't have time like, I think you'd be surprised how much time you're going to have after you make your way through it and get it all straight,

Sylvia 1:10:16
absolutely, yeah, not only will have time the confidence that you will get this is so empowering, because at the beginning this, I don't like when the doctors say they can eat whatever they like. I don't appreciate this. I will be more grateful if they say your kid can eat whatever they want after some time, not yet, you need to educate yourself, and then they can eat whatever they like. Because for me, it wasn't an option to go back home, give my son whatever and see this roller coaster. I said, that's not an option. That was my first thought, this roller coaster, it's not an option, period.

Scott Benner 1:11:07
Yeah, we're gonna, we're gonna figure out a way around this

Sylvia 1:11:10
exactly. And what I did, I don't know why people are have to get stuck in one way of living and managing and eating. Experiment, experiment, people you have all your life. Experiment, don't get stuck in one way. Try, try, try different things, and then choose your way. When we came back home after the hospital, I sat with my family, and I said to my son, I will remove some things from your food. I just need time. Give me time to figure this thing out, and after that, we will start bringing your favorite meals. I felt like exactly what I felt. I felt like I'm in a ship in a stormy water. I don't know how to sail this ship, and I'm in a stormy water. Yeah. So the only thing I could do is to remove the storm, take away

Scott Benner 1:12:14
some of these variables exactly, exactly, get me get my footing, and once I figure out the easier meals, then we can try to level up and try something a little more difficult and see if we can't get that as well.

Sylvia 1:12:26
Yes, yeah, took me months. It doesn't, it didn't. Took me years, months, and now we could.

Scott Benner 1:12:32
Yeah, no, I know I feel that way too. When I see people say I don't have time to listen, it does make me sad. I'm not gonna lie. I think the same thing. I think, no, you'll have so much time if you listen, you just have to get through this part now. Yeah, oh gosh. Well, I really do appreciate you sharing this all with me. It was lovely.

Sylvia 1:12:49
I do appreciate you. Thank you for everything, honestly. Thank you. You gave me so so

Scott Benner 1:12:55
much. You're embarrassing me, but I but I appreciate No, no, no, no, no, I'm honest. Yeah, no, no, I know. Don't worry. I don't think you're bullshit at all. No, no, no, I cannot do this. Yeah, I don't think you could lie about this if you wanted to.

Sylvia 1:13:08
No, I don't like to lie. I cannot be not honest. I just can't.

Scott Benner 1:13:14
No, it's really a pleasure. And for everything you do on the Facebook group, I can't thank you enough for that. Yeah, and I'm just very happy that any of this was valuable for you and that you found a way to, you know, incorporate it in your life. Yeah, it's a pleasure to talk to you, and I really am a little embarrassed, but I am, but I'm, I'm very happy for you. Thank you. You're very nice. Hold on for me for one second. Okay, okay, thank you. Yeah, thank you. Hold on.

Sylvia 1:13:42
You. Head

Scott Benner 1:13:45
now to tandem diabetes.com/juicebox and check out today's sponsor, tandem diabetes care. I think you're going to find exactly what you're looking for at that link, including a way to sign up and get started with the tandem Moby system. The conversation you just enjoyed was brought to you by us Med, US med.com/juicebox, or call 888-721-1514, get started today and get your supplies from us. Med, the podcast episode that you just enjoyed was sponsored by ever since CGM. They make the ever since 365 that thing lasts a whole year. One insertion every year. Come on. You probably feel like I'm messing with you, but I'm not. Ever since cgm.com/juicebox, I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox podcast. The podcast contains so many different series and collections of information that it can be difficult to find them in your traditional podcast app. Sometimes. That's why they're also collected at Juicebox podcast.com Com, go up to the top. There's a menu right there. Click on series, defining diabetes. Bold beginnings, the Pro Tip series, small sips, Omnipod, five, ask Scott and Jenny, mental wellness, fat and protein, defining thyroid, after dark, diabetes. Variables, Grand Rounds, cold, wind, pregnancy, type two, diabetes, GLP, meds, the math behind diabetes, diabetes myths and so much more, you have to go check it out. It's all there and waiting for you, and it's absolutely free. Juicebox podcast.com, the episode you just heard was professionally edited by wrong way recording, wrongway recording.com.

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#1581 Runnin' Down a Dream

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

Adam, diagnosed with T1D at 39, is now a passionate runner and hiker—thanks to his wife, who pushed him off the couch and into the woods.

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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 back to another episode of The Juicebox podcast.

Adam 0:15
My name is Adam redling, and I'm a type one diabetic that was diagnosed at the age of 39, years old. If

Scott Benner 0:25
this is your first time listening to the Juicebox podcast, and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all, look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management. Go to Juicebox podcast.com. Up in the menu and look for bold Beginnings The Diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. 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 healthcare plan or becoming bold with insulin. This episode of The Juicebox podcast is sponsored by the Dexcom g7 the same CGM that my daughter wears check it out now at dexcom.com/juicebox, this episode of The Juicebox podcast is sponsored by Omnipod five. Omnipod five is a tube, free, automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes when they've switched from daily injections. Learn more and get started today at omnipod.com/juicebox at my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox

Adam 1:55
My name is Adam redling, and I'm a type one diabetic that was diagnosed at the age of 39 years old.

Scott Benner 2:05
And how old

Adam 2:06
are you now? I am currently. Had to think about that for a second. 42 I will turn 43 this August.

Scott Benner 2:13
You're almost for about three, four years, then going on three. Oh, really. Okay, so kind of

Adam 2:21
Yeah, I was diagnosed a month before I turned 40.

Scott Benner 2:24
I see okay. How about other issues through your life? Have you had any other health issues prior to this?

Adam 2:30
Nothing, autoimmune, no regular stuff. Yeah. I mean, I've always considered myself to be a pretty healthy individual, but as I go back through my chronological health history. After being a diabetic, I realized that I did have quite a few things happen to me throughout my life. I herniated my back twice, which never resulted in like surgery, but was pretty debilitating for quite a fair amount of time. So I've had like health implications, but nothing, nothing

Scott Benner 3:02
related to autoimmune Hey, how do you herniate your back

Adam 3:05
twice by having terrible posture and sitting a lot, crouching over and just doing the same thing bad over and over and over again, and it's literally the straw that broke the camel's back type of situation.

Scott Benner 3:20
No kidding, and you're Joe Camel in this scenario, I am. Yeah, yep. So you herniated a disc,

Adam 3:26
yeah. So I herniated between l4 and l5 okay, caused, the first time it happened, it caused my left leg to go numb, and the second time it happened, it caused my right leg to go numb. So two different times, probably four or five years apart in my 20s,

Scott Benner 3:42
what did they do for it? Did you get treatment, or was it just rest? How did you handle it?

Adam 3:47
PT, so a lot of physical therapy. I got some steroid injections to, like, reduce inflammation, and then just a lot of stretching, just because I was really not active in my 20s, when I was in college, okay? And so I was just really, just terrible flexibility and mobility. And so that led to, I think part of the reason that I actually herniated the disc to begin

Scott Benner 4:11
with. This is going to sound a little Hocus Pocus, but any huge stress things around those times as the

Adam 4:17
first time it happened, it was right after graduation. So I had my first

Scott Benner 4:20
job at that point, that was not a stressful time. No, not,

Adam 4:25
not, not in hindsight, not at all. I loved having my first job. I loved getting out of college and starting to feel like I could breathe in the real world a little bit. I enjoyed that time

Scott Benner 4:36
in my life. I'm just a bit of a believer in John sarno's books about back pain. So I was just wondering if maybe there was a if your brain wasn't trying to distract you a little

Adam 4:47
bit. No, I don't think so. I mean, I remember when I sent my PT report to a friend of mine who was in college at the time, she told me that I had the worst mobility of hand. String that she'd ever seen in a report. So, like, fun, that it was bad, yeah? But that's, I mean, I it's a good transition, right? That that's what got me into running. Yeah?

Scott Benner 5:11
I was gonna say in with you're an active person today, right? Very

Adam 5:15
active. And that started that whole process was I started running as part of my physical therapy after I got back on my feet, and a year to the day of herniating that disc, I was running my first 5k How about that? So that's really what got me to become a runner, and I'm still a really big runner to this day. So

Scott Benner 5:42
you're here today to tell people that running causes type one diabetes.

Adam 5:45
That's exactly right, yes, yes. That's what I think, correlation, not causation. No, of

Scott Benner 5:50
course. Yeah, yeah. Okay, right. Right after college, you begin, you became a runner, went right to a 5k in a year. That's pretty awesome. Like, was that hard to do? Like, from sedentary to a 5k Yes,

Adam 6:02
it was. It felt like such a step change in my physical activity at the time, because, you know, I was, I went to college for four or five years. Like most engineers, I took a five year path. A lot of that was spent sitting and studying, not being active at college, I can remember when I started dating my now wife. At the time, she was into hiking, and she was kind of appalled at how inactive I was, and so we started hiking together in college. That was probably the only physical activity I got. But it was telling to me that, like, I really didn't get out a lot in college,

Scott Benner 6:47
I was busy studying. Did you want to hike, or did you want to see her without her shirt? What was little bit from column A? A little bit from column B, I guess you did want to get moving? Then a little bit No. I mean, it was

Adam 6:57
part of the development of our relationship, right? Was spending time together in the woods and kind of losing ourselves in the woods. And we still do that today, and that's a big part of my life is kind of going and getting into the woods and just being disconnecting. Quite frankly, it's, it sounds cheesy, right? But it's like a huge I find it to be a huge therapeutic exercise for me.

Scott Benner 7:26
I would tell you it sounds cheesy if I didn't, a week and a half ago, tell somebody that during the day, while I'm working, I enjoy turning around, looking into a terrarium, because there's like, plants and dirt in there, and I can't get outside at that moment, but it, it is actually valuable. Yeah, yeah. So actually getting out in the woods is, you know, a different thing, yeah. Do you have kids? I do. I have three kids. Oh, wow. You take them out with you, I imagine, yes, yes, definitely. Do they all enjoy it? Or do you have one that doesn't love it?

Adam 7:58
No, they're all into it. They all love it. Yeah, everything's great, yeah. How old are the kids? 12, nine and six? Oh, was the three year thing on purpose? No, it's CL and right now it's three, but it's closer to two and a half. Three and a half,

Scott Benner 8:13
okay, yeah, your wife's just interested in you on a schedule. It sounds like That's right, yes, about every two and a half years that a bell goes off somewhere and you're like, oh, it's time again.

Adam 8:22
That's it. Spot on.

Scott Benner 8:26
Adam's like, Oh, I see you've been married. So when you're diagnosed at 39 telltale signs or out of nowhere, how did it hit

Adam 8:37
you? I was training, so I was getting ready to turn 40 that year, obviously, and like, like a lot of other people, I kind of felt 40 as a big number for some reason. And so I had been running half marathons for a decade, both on the road and in the woods, on trails. And I think when I was getting ready to turn 40, I said, I'm going to run a marathon this year, because I've never done that before. Okay, and I couldn't find any trail marathons that were available to me, so I skipped over the marathon and started training for a 50k the year that I was turning 40. So I was in the process of training for a 50k that was in October of 2023, when I was diagnosed. So I was, like, mid training to get ready for that. And so, like, I started losing weight, which shouldn't be surprising, right? I'm running 20 miles a week, yeah. So I lose a few pounds, whatever great side benefit. Right in the middle of all this training, our family took a big trip to Italy as part of my mother's 70th birthday, and so I went with my mom and my sister and my whole family to Italy for two weeks and a nothing but pasta, pizza. Pizza, gelato, pastries and wine for two weeks, and didn't really run a lot in Italy. Okay, we walked everywhere, obviously, but, like, I went for like, one run in Venice, and that was it. I see, yeah, we came home. I get on the scale again. I was like, Huh? I lost a couple more pounds. That's interesting,

Scott Benner 10:24
but now I'm not moving, and I ate like crazy, but I still lost weight,

Adam 10:29
yeah? But then you realize, like, you're like, Well, I walked everywhere. Like, you normalize it, right? Like, yeah, I walked everywhere. Those, you know, there's no preservatives in the Italian like, whatever, right? You try to sell stuff, yeah, oh, they've got better portions there, and it's not America, and I'm not gorging myself, right?

Scott Benner 10:46
Stay here for another year. I'd probably disappear.

Adam 10:50
Yeah. And so then I went to I went to Texas for a conference for a week, and I didn't do anything in Texas. I sat there a barbecue all day and didn't go anywhere or walk or run or do anything. And I came back from Texas and I lost more weight. I lost like five more pounds, but I lost like 15 pounds over the course of like two months, a month

Scott Benner 11:15
and a half the Texas trip, make you question it further. Yeah, and

Adam 11:19
there was other things happening in the Texas trip that I was starting to catch, like, I was peeing a lot and I was really thirsty, and I can remember recognizing that that had started to happen at the end of the trip to Italy, that, like, I was up once an hour in the middle of the night to pee, you know,

Scott Benner 11:38
yeah, Does that ring a bell for you. Like, do you know anything about diabetes or

Adam 11:43
no? Nothing, nothing at all. I have no because I don't know anybody with type one. Okay, so we come back from Texas, we go to a pirates game Fourth of July weekend, and I was so tired and so thirsty that it was, it was comical. And we went to the game, and my kids got these, those giant, like, 32 ounce sodas, yeah, and I drank, like, four of them at the game. Like I drank, which is hilarious, in hindsight, the kid out of the lake, yeah. Like, give me your soda, like, just drank. And I remember, like, they were free refills. And, like, before we were leaving, like, I filled one up for the walk back to the car, and my wife was like, What are you doing? I was like, just so good. The new me, yeah, right. And my sister in law was at the game, and she's a nurse, and I started telling her what was going on. I'd also noted my vision. Noticed that my vision had started to get a little bit blurry too, and so, like I knew something was up, right? I didn't feel well. I felt generally unwell. I was peeing a lot. I was losing weight, like I knew something was up. I had already scheduled, like, a well visit, not even a well visit, but like a sick visit for the my GP, but my sister in law was like, I'm pretty sure you have diabetes.

Scott Benner 13:02
Oh, she just hit you right in the parking lot at the stadium. Just,

Adam 13:05
boom, yeah. And I was like, Okay, well, that would be strange, but Okay, right? And I went into my GP, and I'm surprised, in hindsight, that she didn't finger prick me in the appointment. Like, I'm surprised that they don't do that as just, like a general check on something like that, like they did a kestone strip, and I turned it black, but they didn't finger prick me to check my blood. They just took a blood draw. And then I got called the next morning at like, 7am and she was like, okay, so either you're gonna go to the hospital or you're going to start taking insulin like today at home, if I can get an endocrinologist appointment with you. Okay, yeah. So I learned how to inject insulin over telehealth visit, which I think is a pretty I don't know how many people have done that. I was gonna say, did that work? Okay, yeah, it was fine. They showed me how to operate the I was on pens to start Atlantis and Humalog, and I was on pens, and I it was fine. I wasn't squeamish about it. I was totally comfortable doing I see, yeah, gotcha. So, like, my story as, like, a adult onset type one, I feel like is pretty par for the course, to be honest. Yeah,

Scott Benner 14:16
did you feel I mean, obviously they didn't talk to you for very long. They were just teaching you how to. They were teaching you how to kind of get your blood sugar down. But nobody said, hey, maybe we got to make sure you're not. DK, before we start bringing your blood sugar down or anything like that. They just gave you the insulin. Today's episode is brought to you by Omnipod. We talk a lot about ways to lower your a 1c on this podcast, did you know that the Omnipod five was shown to lower a 1c that's right. Omnipod five is a tube, free, automated insulin delivery system, and it was shown to significantly improve a 1c and time and range for people with type one diabetes when they switched from daily injections. My daughter is about to turn 21 years old, and she has been wearing an Omnipod. Pod every day since she was four, it has been a friend to our family, and I think it could be a friend to yours. If you're ready to try Omnipod five for yourself or your family, use my link now to get started. Omnipod.com/juicebox get that free. Omnipod five Starter Kit today. Terms and Conditions apply. Eligibility may vary full Terms and Conditions. Can be found at omnipod.com/juicebox you can manage diabetes confidently with the powerfully simple Dexcom g7 dexcom.com/juicebox the Dexcom g7 is the CGM that my daughter is wearing. The g7 is a simple CGM system that delivers real time glucose numbers to your smartphone or smart watch. The g7 is made for all types of diabetes, type one and type two, but also people experiencing gestational diabetes. The Dexcom g7 can help you spend more time in range, which is proven to lower a 1c The more time you spend in range, the better and healthier you feel. And with the Dexcom clarity app, you can track your glucose trends, and the app will also provide you with a projected a 1c in as little as two weeks. If you're looking for clarity around your diabetes, you're looking for Dexcom, dexcom.com/juicebox, when you use my link, you're supporting the podcast, dexcom.com/juicebox, head over there now, no,

Adam 16:29
nope. And I remember I was talking to her about it, and she said, if you feel like you're dying, you should go to the emergency room, but if you don't, you're fine to stay home. And I was like, Okay, well, I don't feel like I'm dying. I don't feel like I'm well, but like, I'm not, you know, she was asking some pointed questions. Like, are you huffing and puffing when you're going up the stairs, like, all that kind of stuff, right? Are you throwing up? And, like, she was like, if you throw up,

Scott Benner 16:57
go to the ER, like, period. You know, it's great medical care you're getting out there.

Adam 17:01
Yeah? And when I told my sister in law about that, she was horrified. And my my so I what the other sister in law is a doctor. So I have two sister in laws, one's a nurse. I have three. One's a nurse, one's a doctor. When I told them about it, they were checking in on me, like once an hour, yeah? Like, Hey, how's it going? Like they were all over it.

Scott Benner 17:23
I would say Adam, that I don't think a lot of people make an announcement two hours before they die that they're going to die, except for me, I like to walk around going, oh my god, I'm dying. But that's not, that's not the same thing. So, like, it's a weird way to tell somebody about something that they don't know anything about when they're in the situation, like you said you you spike the ketone strip. It sounds like yeah, and then on top of it, they're online, telling you, hey, use the insulin like this. They don't know how much insulin you need. I know, yeah, yeah. I get hindsight probably freaks you out, huh?

Adam 17:52
Sure, not really. Yeah, I'm comfortable with it. I mean, it didn't get me anywhere dangerous. You know, at no point did I go low. I mean, it was concern. And I look back at the numbers I was taking at that point, and they were really conservative.

Scott Benner 18:08
I was gonna say it's not a lot of insulin. And in fairness to them, it did work. How long until you actually see a physician and get some direction? I saw

Adam 18:16
them the next week. I think I got in on like that, Monday or Tuesday the next

Scott Benner 18:22
week, you're not covering carbs or anything like that. You know,

Adam 18:27
I don't remember. It was only a couple years ago. I actually don't remember if I think, I think they just told I think I was just on Lantis and eating low carb for a few days. Okay, I think that's what they did. They said, keep your carbs to like, 15 to 30 grams a meal, and take Lantus. Start checking your blood sugar three, four times a day, start logging that, and then we'll talk next week.

Scott Benner 18:53
No one said to you, your blood sugar could get low. You could become dizzy, disoriented. None of that was information shared. No Do you use the internet or do you just wait for the next week?

Adam 19:03
No, I mean, I'm an engineer. I dive right into the problem head first, right? And I threw my whole I threw everything at it I could right away. And became really well educated on diabetes really quickly.

Scott Benner 19:18
Okay, you didn't even have time then to worry like that, this would get in the way of your activity, or something like that. You figured there was a way around it.

Adam 19:26
Yeah, that's my mantra. Is, can do right? You can figure it out. You can do a lot of things that you might not realize. That's the engineering attitude, right? Is you can, I mean, I say that at work all the time, like when you put a man on the moon, you know, you can figure anything out. Yeah, right. And so this was no different, right? It was like, there's a lot of people that have this disease. There's a lot of resources for people that have this and it was really obvious to me right away that there's people who live their whole lives this way. And it was just another thing to figure out,

Scott Benner 19:57
and you were able to do that with. Information you collected or with your doctor, or a combination,

Adam 20:04
a combination, I felt the diabetes educators at the particular office that I go to were actually they were really good diabetes educators, and were all in on supporting me. I felt really well supported in whatever capacity I needed it. And I quickly just educated myself though by reading and just taking it all in.

Scott Benner 20:25
Gotcha, did you move to pump? Are you still MDI? How do you manage?

Adam 20:29
No. So I was on injections for like, two months, and it was just too difficult to work out with Lantis in my body. You get like, that was that was too hard. Yeah, yeah, lows were, were challenging to navigate. Okay, did you put weight back? No, I didn't. Well I went from, yes, I did. I mean, I put on the 15 pounds I lost through diagnosis. But I've, I've stuck at that number,

Scott Benner 20:55
that number since then, yeah, how have you figured out how to, how to run and, I mean, you're doing it successfully now, and it's part of why you wanted to come on, right? So yeah,

Adam 21:07
and I feel like, in general, that's a gap in that's the gap I always see right, like you go on Facebook pages, whether it's your page or any page, or Reddit or wherever, right? And there's always these new diagnoses or old or older people that have been diagnosed and say, hey, I want to get into running, and I don't know how to do it. I keep going low, right? Like, that seems to be this really common gap that exists, is people not knowing how to navigate exercise. Yeah, right. And I was willing to just go trial and error it and like, I'd go running with, like, one to two units on board, and I would plummet, and I'd be like, Okay, I'm not going to do that again, right? Like, I figured out what doesn't work, yeah. Like, and then you just, like, rinse, repeat on it, right? And you just figure it out. And so I started figuring out, like, really quick, like, Okay, I can't run with Lantis. Like, that just doesn't work. And so I got on a pump I want to so I was diagnosed in July, I was on a pump by September, because when I I ran the 50k in October, I was on the pump. Then

Scott Benner 22:21
that quick, yeah, I was gonna say, because you said you ran that quickly. And I was like, Oh, I wonder if you got low during the run. But no, I is that? No, going to the doctor and just saying, look, I think that the Lantus is why I'm getting low while I'm running. I need to do something about that.

Adam 22:35
No, she was advocating for a pump for me at the same time. Okay. She said, your your lifestyle, who you are, what you want to do, you need, you should be on a pump. And they were even like, we don't know if the insurance will cover it this quickly, but they did, and I jumped right on it and took on I did MDI. Like, if I had to go back to MDI, it would be so uncomfortable, because I did it for such a short amount of

Scott Benner 23:01
time remember how to do it. Yeah. What about a CGM? Did you get a CGM at the prior to the pump, or the same

Adam 23:08
time I did? I was on a libre three for a couple months. I think I finger pricked for like a week before they put me on a CGM. Gotcha. And I was just like, this, sucks. Like this, like, and working out was so hard, right? With finger pricks, right? It's almost like a you have everybody should be on a CGM. Like, it's

Scott Benner 23:30
why was it hard? Just because you didn't know where you were, what direction you were moving when you tried to get active, correct? Yeah, okay. Did you do a deep dive into your family to see if there was other autoimmune in your family, I

Adam 23:41
did. The only example of autoimmune in my family is my fault, and I don't even think this is actually autoimmune. It's not well known, though, something called transverse myelitis, which is an infection in your spinal column that affects the myelins in your nerves. So my dad got that in his 40s or his late 30s, it affected his mobility and some of like his feeling in his hands and feet, but that's the only thing remotely close to autoimmune in my family, okay, all

Scott Benner 24:10
right, and you haven't developed anything since then, no. All right. How about your kids? Are you worried?

Adam 24:17
Yeah, that's on my radar. I've thought about putting them through some of the clinical trials to test for, you know, some of the indicators. I just don't know if I want to have to hold them down for a blood draw.

Scott Benner 24:31
The only they would enjoy that.

Adam 24:33
I don't think that they would now. So what do you

Scott Benner 24:36
do now to go for, I mean, to train for a marathon. Like, like, that's a, I mean, a great example. Like, because people can take your advice, or you know your story, and pare it down to their level of of running. How do you prepare to get up and go for a run? I mean, is it as simple as, like, what we talk about just like, don't run with insulin on board and

Adam 24:55
don't run with insulin on board. Or, very little. How. Have fast acting sugar with you, whatever that looks like for you, Skittles, you know, gummy bears, Gatorade, like whatever fast acting you need be, well hydrated. I found that's to be that's a pretty critical element of it. Yeah, I don't know. I mean, I that's what's funny, right? People are always overwhelmed by the idea of working out,

Scott Benner 25:23
and there's not that much to it. It seems like, I mean,

Adam 25:25
you just have to think about it, right? Just be thoughtful. Like, are you running first thing in the morning? That's probably best, right? You don't want to try to run after you've taken insulin for a big lunch or something like that. Even my experience is, even if, like, you're after, like, the quote, unquote, four hour half life on Humalog or some other fast acting you still have it. Like it's still lingering in your body. Like, even if the controller tells you you don't have anything on board, there's still some there. Yeah, you know. And I've had experiences where I've gone low, like, late in the day on a run. And I'm like, Man, that was really strange. But you realize, like, I took insulin for lunch, breakfast, lunch, a snack and dinner. Like, you've been taking it all day, like, big doses, right, you know? And so I found early in the morning as easiest before your day starts.

Scott Benner 26:16
Get up and run. Get up and run. Yeah, yep. I you know, I think you're right that when you see people online always talking about, like, I can't figure this out. It's, you know, I'm exercising, or my kids go into soccer, or whatever it is, it's always, when you really look at the clock, it's, they came home from school, ate a bunch of food Bolus and went right to soccer practice. Yeah, you know. Or, you know, I got done work, and, you know, I tried to go, I tried to run after work or something like that. Yep. I don't mean to oversimplify it, because there are extenuating circumstances. And I'm not certainly saying that it's as simple as you just laid it out, but it's a very good starting place. Don't run with insulin on board. Don't run with active insulin for a meal. Your insulin on board might look like there's nothing there. But if you Bolus two hours ago for a meal and covered it perfectly, you know, your your pump might say, Look, no, there's no insulin on board, because it all got used for that food, but it's still insulin. It's in you and active, yep, when you start moving, whatever you're gonna do, and then you're gonna drop,

Adam 27:18
yeah. And I think there's even an element of, like, I wonder if there's some physical hold up. If you've taken a big Bolus, it's like, like, they talk about tunneling, right? Like, I think there's some element to that too. Like, you moving around and sweating and being active. It distributes it that maybe it, like, never got used in the first place. And like, I like, I'm totally speculating here, but like, I've seen, I've I feel like I've actually experienced that on the back end.

Scott Benner 27:47
So is that why you brought up hydration? Because you want to make sure that the insulin is being used as you expect it to be used.

Adam 27:52
Yeah. And also, like, if you are, like, I've had experiences where I've been so, like, when you do a really long run, like, when I'm doing these ultra marathons, you need to eat the whole time, right? So, like, you're eating calories and carbohydrates the entire race. And so I've had experiences like, where, when I'm doing that, I'll want, like, my pump will just be put my pump in exercise mode, for example, and I won't, I won't take any Bolus for the food I'm eating, so I'll eat like, 70 carbs an hour, and I won't take any Bolus for it at all, yeah, and I'll just let the basal keep up, like the basal is able to keep up with the

Scott Benner 28:31
carbs, if that makes sense, you get some spike, but it's just not big.

Adam 28:36
Well, you, if you're not hydrated, it can be a big spike, okay, right? But quite frankly, like on race day, I'll be flat. I will be flat as can be. In fact, there's situations where I'll turn my pump off completely during a race and still eat 70 carbs an hour and not go and not go high, like for like the for that first 50k i i ran with the pump off for an hour. That was a seven hour race. I turned the pump off for six hours straight and ate carbohydrates the entire time.

Scott Benner 29:09
And your blood sugar stay down.

Adam 29:10
My blood sugar was flat. Okay, yeah, but it's like paying attention to those types of things, right? Like, yeah, oh, wait, I went high when I don't normally go high. Oh, wait, I was dehydrated, right? So the little bit of basal insulin couldn't get distributed, couldn't get utilized properly, and so the food I was eating was causing me to go hot.

Scott Benner 29:32
And this is not an automated system that you're on. I'm on automated, yeah, and what did you say? You took the pump off for the six hours, turned it off. Turned it off. Okay, so Omnipod, yeah, so the automation wasn't trying to give you insulin during that time. Wait, you put it in manual.

Adam 29:48
I'll put it Yeah, because that's the only that's the only way you can turn it off,

Scott Benner 29:52
right? And then what do you do? Do you go to like a zero temp basal? Or you just put the basal where you like it for the run? If

Adam 29:57
I'm going to keep the pump on, I'm. I'll go into exercise mode in auto. If I want to turn insulin off, I'll just go into manual and just say, pause insulin. Completely. Pause it completely. Okay, yep, which you can only do for two hours at

Scott Benner 30:12
a time. And so you're just, you're very actively paying attention to the, I mean, you're using the thing that you're using, the Eminem story from the Pro Tip series, like, right? Like I did. I tried a little more, a little less, a little longer, a little shorter, until it made sense, and it worked. And then I said, Okay, that's, yep, that's my timing, that's my amount, and you just figure that out for running.

Adam 30:31
That's right. And there's no, like, set it and forget it, right? Like, you've got to be comfortable in like, if you're going to figure out how to do it, you've got to fall flat on your face at some point. I

Scott Benner 30:43
do wonder, I kind of heard what you were saying under your breath there for a second. Like, I do wonder, how many people just go like, I don't know. The machine didn't do the thing it was supposed to do. It's supposed to keep me from getting too high or too low. And then I suddenly went from being very inactive to very active. My blood sugar got low. It didn't work like that. It's never going to work that way. You really do have

Adam 31:02
no it doesn't. You have to own it like you have to own it, and you have to be willing to fall flat on your face, make mistakes and reflect on like, I loved something you said I was listening to the one yesterday. It was the burnout episode that you just reposted. And you said something about, don't ever ignore a learning experience, right? Like, that was the quote I wrote down, because it's

Scott Benner 31:27
wasted time,

Adam 31:28
right? That's it, though. Like, don't ignore those learning experiences, right? And everybody's answer is going to be a little bit different, but you gotta. You're gonna have to figure it out on your own. The pump can't figure it out for you. It can get you close, but

Scott Benner 31:41
it's a tool, right? I have to say that. I know everybody's like, Oh, this stuff's gonna get better and better, and I do believe it'll get better and better, but as it sits right now, I can't imagine a world where nothing ever goes wrong because your algorithm took care of it. There's too many variables. You know what I mean, like you just being alive, just it offers too many opportunities for whatever that algorithm is expecting or or planning on for it not to happen. I

Adam 32:06
agree, and the more I see it like, yeah, sure, the technology can improve, but you have to still, diabetes is yours, like, you have to use these different tools at your disposal to manage it. Yeah, some something else doesn't manage it for you.

Scott Benner 32:21
Yeah, overnight sleeping, pretty awesome. Like, you know what I mean. But then really, imagine why that is. Like, even, even people who are on, like, automated systems who are like, I don't trust the automation, but I do turn it on at night when I sleep right? Like, what's at night? Nothing, no variables. That algorithm like your setting. If your settings are good, the algorithm does what it does. Nothing changes too much. Now I'm not talking about like you're growing children or something like that, but for people who are like not growing overnight or something like that, it made it so rock solid. Overnight. Agreed? Yep, I agree again. Look at why. Because you're not active. Your activity is not changing one way or the other. You're not eating. You're not you know, hopefully you're not digesting food still at two in the morning, you know, like that kind of stuff. So, yeah,

Adam 33:04
yep, you're exactly right, yeah. So I don't know that's what I've done to figure out running. And I mean, I've run several ultra marathons since then, and I have another one on Saturday, so it hasn't held me back. I will share a failure story for running. I was in a 50k and we got rained on, and my whole body got really cold. I had never experienced this before, but the monitor went and read all low, which was the first time I'd ever seen that cap stocks all low. And I was about 10 miles into the run, and, you know, I ate a handful of Skittles, right? Just like ate a ton of sugar out of paranoia. I didn't feel low. But we happened to be getting back to the car at mile 10 of this race, and so I was like, All right, I'll check my fingers, right? I'll do a finger prick at the car, like, I know I've got that stuff there. And my hands were so cold I couldn't get any blood on my fingertips right, because we had been rained on, and it was cold out, the sensor went and told me, like, pour whatever the Dexcom says when it stops working properly, right? Come back three hours. Like, I'm on break or whatever it says out the lunch, yeah, to lunch. Like, come back later. And so I was like, All right, I'll put another one on. We'll keep walking, and I'll wait for the two hour warm up. Like, I'll be good. Like, I went to put the other backup that I had on, and it just like, fell right off because I was all sweaty and gross. And I just, like, looked at my buddy, I was like, it's not gonna happen today.

Scott Benner 34:36
Like, I'm done. You're running. I'm not. I'm going home,

Adam 34:39
right? Like, I'll be waiting for you at the finish line, right, and I'm gonna go hang out. And so now, when I do races, I actually wear two CGM at the same time, so that if one fails, I'm not in the woods blind

Scott Benner 34:52
when the race ends. Like, do you have it timed so well that you you switch to the newer one then, like, it's not like, a. 10, like a 10 day waste. You know what I mean? Like, you don't go running on the first day of a sensor and put another one on, right? You kind of time it out a little

Adam 35:08
bit. Yeah? But right in the SIR, for example, though, right now I have a g6 and a libre three on at the same time. Oh,

Scott Benner 35:14
I see, okay, yeah, it's, right, that's, yeah, I was thinking of it as the g7 because that's what Arden is wearing right now.

Adam 35:21
No, because g7 doesn't have iPhone integration

Scott Benner 35:26
yet, and you like that straight to iPhone. Oh, yeah, you're not looking to carry the transmitter

Adam 35:31
around. No, I'm not into having two phones. You know,

Scott Benner 35:34
I understand. How have you integrated, if at all, your wife into your life with diabetes, because you're together for a while now, and then this big change comes. I'm wondering, Is she involved? Does she understand it? Have you kept her at arm's length? Has she, you know, said, No, I won't understand her. I don't care. It's yours. How does that all work out?

Adam 35:54
She's super engaged in supporting me with diabetes, and always has been, and she's become really well educated herself in what it all means. She follows me. She'll send me a message when I'm on a run, like, eat sugar, right? Like she'll see my trend going low. She's very well engaged and understands the challenges of diabetes, right, without a doubt, and has been like a rock star in the background.

Scott Benner 36:21
That's excellent. That's, you didn't have to ask her at all. No, absolutely not. Yep. Okay,

Adam 36:28
no, that's the relationship that we have, right? Is, it's just, it's a supporting one.

Scott Benner 36:33
Okay, yeah. Can you give me a half a second here? Rob has an editing question about an episode that I have to get back today? Yeah. Do you want your intro for Noah Gray, where you say tight end for the Kansas City Chiefs Noah gray to go right into the bowl beginnings, head and Yeah, hold on a second.

I liked it when I did it. If you tell me to move it. I'll defer you. Look at me. Look at me being collaborative. You know, it's funny. It's crazy that he just texted me about this, because I was going to bring this guy up to you. I was going to say to you, hey, tomorrow, I have an episode coming out with Noah grace, the tight end of the Kansas City Chiefs. Oh, nice. And what I wanted to tell you was that, how many people asked me to ask him about, like, you know, you're playing football, like, at the highest level. You're this giant person. You're running around. How does he manage it? Everybody wanted to know like, like, get his secrets. His secrets were he eats the same thing at a at the exact same time, before the game starts, every time, gives himself the exact same amount of insulin. Yeah, yeah. His secret is, he takes away the variables

Adam 37:49
that, I mean, that's one strategy, right? Is, if you don't want to be super flexible, you can find ways to be more rigid.

Scott Benner 37:57
Yeah, you know, once a week for 16 or 18, I guess you hope for it to be a few more weeks, you know. He does it for, you know, four months or so, and then he goes back and lives his life a different way. The interesting thing to me was all the people at type one reaching out, because I was able to say, like, Hey, I'm going to be interviewing. No, if you have any questions, like, you know, can you put them up? Everybody thinks he knows something they don't know.

Adam 38:18
But I think so. Here's, this is a bit of a pet peeve for me. Noah gray and any other professional athlete or collegiate athlete has resources at his disposal that none of us could ever dream to have.

Scott Benner 38:33
Well, when you hear it, though he's not using any of them, that's fair,

Adam 38:37
yeah. But a lot of these people, a lot of these, that's fine, and I'll listen with open arms right when he has his episode. But my experience is, a lot of these professional athletes or collegiate athletes, they have nutritionists that are monitoring their blood sugar during a game, or they're monitoring their diet, and they've got those resources at their disposal. And I think that may be intimidating to people to hear, right? Well, I don't have that, so I can't do

Scott Benner 39:05
that, so I guess the success isn't mine to have then, yeah, I take your point. It has been my experience when I've spoken to people. I don't know if I've ever said this on the podcast before, but why don't we just go for it? It's been 11 years now. I can pretty much do whatever I want at this point. Adam, I've interviewed a lot of people who are very active or professional athletes or something, whose knowledge of their diabetes. I've been shocked by they don't seem to understand it. To your point, like, I don't know. So their lack of knowledge, their lack of knowledge, stuns me sometimes, yeah, the guy tells me, or, you know, there's somebody tracking me while I play. Or, I don't really know, like, there's just been a lot of like, like, don't get me wrong, like, older guys or girls, like, I get like, you know, I use SAM as an example a lot, who's, you know, used to be a center fielder in the Major League Baseball, and he said this thing that I think I'll never forget, if I was chewing seeds in center field. Old, my blood sugar was okay, and if I was chewing gum, I was low. And, like, that was how he was met. Now, he didn't have a sensor, he didn't have, like, he just felt dizzy and threw gum in his mouth. You know what I mean? Like, crazy, right? Yeah, that, yeah, yeah. But nowadays, like, you know, with all this technology, if I ask you how you manage your meal before you play, and you go, I don't know. I'm like, Really, that's

Adam 40:23
crazy. There's a nutritionist that does that for me. It might

Scott Benner 40:27
be somebody who does the thing now, Noah was pretty cool. Knows, like, look, he did some trial and error. He figured out what worked for him, and he does it now. And great, yeah, now takes his pump off. He wears a tandem pump. He doesn't wear it while he's playing. Told me sometimes he'll pop it back on at halftime if he needs the Bolus. And he was really honest about, like, the thing he's got set up works great for four quarters of football, but that he can run into some issues if a game goes into overtime.

Adam 40:54
Ritz, that tight. Yeah. Wow, that's surprising,

Scott Benner 40:57
yeah. So I think what he's got it worked out so that when that game ends. He needs to get something accomplished, yeah? And I won't give it all away. You guys should go listen to it, because he was really, actually, really good on the show anyway.

Adam 41:09
That's great, yeah? But I think, you know, you see the Dexcom warriors, and you see people going and speaking at conferences and various functions, and they've got that kind of a story to tell, right? Of, well, I don't know if I, if I want to go talk to a nutritionist. They're at my disposal, you know, or they, or they do it for me. To your point, I think that can be intimidating to people exactly like, exactly what you said earlier, right? Yeah. I feel like I'm a pretty average person when it comes to athletic ability, and I've been able to figure it out, yeah, and I feel like anybody can figure it

Scott Benner 41:45
out. You're saying, If I can do this, you can do it too. I Yes, yeah, absolutely. I prefer the stories of, like, I don't know if you ever heard Chris. Chris Dudley was on one time. He's an, you know, by this time in his life, he's an older man, but he played the NBA and with type one, you know, long before any of this was going on, and he just said, like, I couldn't get dizzy. He's like, I'd lose my job. Yeah, that was that. There's nobody protecting him. There was no, you know, there's no ADA standing up for this guy. Like he, you know, I had to do what I had to do, and I had to bounce the damn ball and get the rebounds. And if I didn't do it, I was out of there, yeah? And I was like, I guess that'll get you moving, right?

Adam 42:23
Today is just different, though, right? Like the metrics and studying athletes is just totally different. Makes you

Scott Benner 42:30
feel like there's too many people, like, if, if that stuff's become a job, we ran out of jobs people needed to do, unless you're listening and you do that, and then I think you're a very valuable part of society. Never mind. But, you know, like, Listen, my kid had a job getting out of college. It was not a thing that needed to be done. You know what? I mean, it's a real it was a real, real job.

Adam 42:51
I mean, I think they're just trying to unlock every ounce of potential, athletic potential, out of people,

Scott Benner 42:57
yeah, in general. Well, may I, if I can for a second, since you went to a pirates game in our story here, I will tell you that I think that doing that is somewhat hurting baseball, because instead of baseball, players playing baseball, giant men are playing baseball. It's not always the same thing.

Adam 43:20
It's turning into analytics too, right? And there's a little argument. I'm not a huge analytics nut, but I know that it's changing the game for certain.

Scott Benner 43:29
I don't want to see a six, seven guy running into the corner in right field for the ball, because his brain is saying I shouldn't be doing this. This isn't me, but he can hit a ball a lot farther when he hits it, so we put up with his terrible defense so that he can bat. And then I think you take away a little bit of the athleticism, it's just gonna make sense to people who don't watch or play baseball, but like, there are baseball players and there are athletes, and there are athletes who are baseball players, but there are also athletes who aren't baseball players, and you can see it while they're doing it. Yeah, you know,

Adam 44:01
that's also like, putting in 10 foot person playing in the NBA, right? This person, it's

Scott Benner 44:08
so awkward, yeah, a six seven guy shouldn't be playing third base. I don't give it how well he hits. You know, you know, they talk about the smell test, you know what I mean, like, or the eye tests. It depends on how you think of it. But like, sometimes they don't pass the eye test. Yeah, and I think that's kind of important too, yes. So anyway, I'd rather have a guy that can play with defense and maybe hits 30 points lower, a fully rounded player. Yeah, I think it makes the game more interesting. Yeah, it takes the roboticness out of it too, because nobody plays with just the freedom that comes with letting your body do what it knows how to do. I almost feel like I can see them all going through the steps in their head while they're doing something anyway.

Adam 44:47
What I mean by that? Course, I shouldn't be a runner because I'm short and I got these little stubby legs.

Scott Benner 44:52
Adam, this is for fun. I don't I'm not paying to watch you on television, so it's okay. That's fair. I don't care what you do. You understand? I.

Adam 45:00
Yeah, you're right. I'm not. I'm also not getting paid, believe it or not, millions of dollars to run.

Scott Benner 45:04
No one's paying you to go for a run. Your wife doesn't even give you 20 to get out of the house. It's

Adam 45:09
the other way around. Actually, I'm paying them to let me do it. So, yeah, it's,

Scott Benner 45:14
it's the other way around before we keep going. Can I pick your brain on a topic that's out and you know the dude at the pirates game, who jumped up the cheer but ended up jumping out of the stands. Yeah. Is he okay? Like, is that local news?

Adam 45:28
I think he's awake and walking.

Scott Benner 45:31
Oh, my God, if you didn't see that, he's in the outfield, maybe, like, right center field, maybe. And it's on the Clemente wall, 21 feet 21 feet tall, 21 feet off the ground. He leaps up with his hands on the railing to celebrate. He looks like he's just jumping up to celebrate. But instead of jumping straight up, he jumps forward a little bit, and then his body kind of intersects the bar, and he loses his balance and just flips right over onto the field. It's horrifying,

Adam 46:01
yeah, it's bad. It's a miracle you survived that. Oh my god.

Scott Benner 46:04
Like, no kidding, yeah, just horrifying. Like, really, I blame Pittsburgh, but I just, you know, I had to spend some time in Pittsburgh this last year. I

Adam 46:15
didn't mind it. I mean, I love Pittsburgh. I've lived here for 20 Oh, God, 24 years and I grew up in Philadelphia. I grew up in the suburbs, did you and no, sorry, Scott, I didn't look back, though.

Scott Benner 46:31
Wait, you grew up where I grew up. Yeah, what got you to Pittsburgh, college? Okay, oh, you went to Pitt. I went to Pitt. I'm a pit guy through for a semester, just long, huh? Yeah, she came right home. But it had nothing to do with Pitt. Actually, okay. She liked the place. She liked everything about it, just that, after switching colleges, she was so far behind in age with everybody else, because she went from kind of a technical college to college that she's like, I'm going to class. People are sometimes, like, almost two years younger than me, a year and a half younger than me. I'm not making friends, and then I'm going back to this tiny little room, and I'm trapped in this box by myself. Oh, I'm sorry to hear that. That was her experience. Yeah, she was going out and trying to do things and everything. It wasn't the place she did. Tend to hate the cold as it got colder, but she's like, I think I just want to come home so she's she's commuting from home now and doing really

Adam 47:22
well. Okay, yeah, I love Pittsburgh. It's a great city. I did

Scott Benner 47:26
not dislike it at all. There's that little park in the middle, and there was a restaurant with, like, glass around it that looked into the park. I had a nice little pizza in there one time. That was nice. I know exactly where you are, okay, all right, yeah, that was good. I know that exact restaurant and the exact Park, yeah, well, we went into the city. I would have seen a pirates game eventually, had she stayed a little longer. Well, it's never too late. It's only a few hours. I know how to get there. Don't worry. I got really lucky on the way home from Pittsburgh one night. So for people who have been listening for a while, like Arden having some needle phobia, that we were having trouble getting, you know, getting worked out, and it's getting better. We're trying something right now that I want to say in case it doesn't work, but if it works, I'll share it with you guys. I was getting up every Sunday morning and driving to Pittsburgh to give Arden a GLP shot and then drive home again. Wow. So I was doing, like, it was, like, an 1112, hour day on Sunday, slow, yeah. So I did that for a few weeks in a row, and one night, I was coming home, was behind this tractor trailer, and it was, you know, it was pretty slow. And I just thought, like, I'm gonna go around the tractor trailer. There were three lanes. I don't remember where I was at this point on the highway. I think after the tunnels coming back this way. Truck trailers in the right. There's car on the left. I'm in the right behind the tractor trailer. I'm gonna go around it on the right. I don't know if you're not supposed to pass on the right or something. I don't know exactly what the law is. I don't pay a lot of attention. But I get over I speed up. I'm overtaking the tractor trailer as I'm overtaking it. I realize my lane is ending because of construction, so my lane is being pinched off very quickly. I look in my rear view mirror to drop back. I cannot drop back. Everything's pinched in behind me at this point. I've got to accelerate and overtake the tractor trailer, and I do that, but I have to really accelerate to make that happen. So as I'm probably cresting 90 miles an hour, and I get in front of the tractor trailer, I stay on it for another second because I don't want to cut the guy off and just jump on my brake right like so I want to clear him so I'm not a problem for him. And as I'm clearing him, there is just a cop, a state trooper, on the right side, beautiful. It's a construction zone. I'm probably going over 90 miles an hour. I accelerated through when I saw that, it was because I didn't want to, like, I didn't want to mess the truck up. Like, at that point, I was like, Oh, I'm getting pulled over. I'm not going to also cut off this tractor trailer, right? Anyway, I know, however, it's, I hope I'm doing a good job. I was not being

Adam 49:53
unsafe. For anyone who's ever driven the Turnpike, they can visualize exactly what you're describing. Also,

Scott Benner 49:58
90 miles an hour is like a walk. In the park on the turnpike. That's right, yeah, that's right. I just start looking for a place to pull over, because I'm like, there's definitely going to be lights on behind me in a second, right? So I find a place I pull over. Trooper comes in behind me, and I look at him, and I go, Listen, I'm going to tell you what happened. You can do whatever you want, but I'm not going to lie to you. And so I told him that story, and he goes, You just trying to get home. And I said, Man, I've been driving from where I live to Pittsburgh to give my daughter an injection that she's having trouble giving herself. And then back again. And he goes, say it again. So I told I explained it to him, and he goes, I gotta write you something, but don't worry about it. And I was like, okay, and he came back and gave me some like, ticket that didn't have any points or it wasn't even a moving violation. I was like, Man, I really appreciate it. And he's like, ah, Get home safe. And that was it. He was

Adam 50:50
probably so confused by what you were doing. Like, you need to repeat that exact statement back to me, because it didn't make any sense. I think when

Scott Benner 50:57
I repeated it back to him, he was like, I've never spent 12 hours in total on my children. So, like, that was very nice to you. I was, and it was during the Eagles Super Bowl run. So I was, like, watching games later instead of watching them live, which was a big deal. I know that seems no, I get it. Yeah, I was really upset by that part. Yeah. And I'd act like I wasn't, like, Arden's like, Are you sure I'm like, how it's no problem at all. Yeah, it's not a big deal. They're just gonna win the Super Bowl this year. They look

Adam 51:24
amazing. Drive 12 hours and then spend enough the rest of the night up watching the game from earlier today.

Scott Benner 51:29
And it was sometimes like, I'd get there, we'd go through the rigmarole of giving her the shot, we'd have lunch, and I'd leave. Yeah, that's brutal, man. It was, it was something. So, yeah, that's brutal. Anyway. That is not why she came home, but I was happy when she came home for that reason, absolutely so. Anyway, my point is, I do know how to get to Pittsburgh if I have to get there. So what are we not covering? Anything that you want to talk about that we haven't,

Adam 51:56
you know? I we talked about gaps, right? And I think I talked a little bit about, you know, the gap of how to on exercise, I think there's, and you touch on this all the time, right? But there's gaps for new diagnosis and resources for new diagnosis. You know, the process of being diagnosed as a really traumatic experience, and people who haven't gone through trauma in their lives, aren't prepared for what's about to happen. And you can see people that you meet who are new diagnoses, that they're walking around like zombies, in some respect, because they don't even it's so overwhelming, right? And they don't even know how to start, and I feel like there should be better resources available to the people who are diagnosed, to re, you know, almost like to have like an advocate, right? Like to have somebody in the practice that's not like a diabetes educator, right? Like some other diabetic, they can be like, You know what Adam is going to be, your big brother, right? Or Arden is going to be your big sister, right? And they're going to help you navigate some of the intricacies of this. Okay? And, you know, it's just, it's fascinating to me that there's not a better network or new diagnosis, and I get it like, there's HIPAA stuff, and like, I've, I get all that, but at the end of the day, there's so many different organizations that are stood up on this non profits, your group, your organization, whatever you want to call it, at this point, like, I feel like that's a gap, yeah, is getting resources to people who are newly diagnosed, and having somebody there to help,

Scott Benner 53:40
probably this might lead me to a tiny bit of a tangent, but this is gonna put me on a timetable if I tell you this so but I'm willing to do it now. I agree with you so much so that I've been, I mean, for years now, trying to figure out a way, like when I came to the realization that most of the answers to your questions are in the conversations in the podcast. But how do you get them to people like and you see it right now. You know, on Facebook, like people ask questions, and they are often answered by group experts who are like, you should try this episode of the podcast, but that's still a very you know, like some of those group experts have their favorite episodes or they don't remember that this is brought up in three other episodes, or maybe spoken about differently one place than the other, but there's still. It's a wonderful thing they're doing, and it's trying to help people. But I keep thinking to myself, like, listen, we can't ask everybody to listen straight through to a podcast with 1000 episodes. Do I think that would help them? I do. Did I interview a 29 year old guy yesterday who will be on a, I don't know if it's going to be an after dark, but diabetes as a kid completely ignores it. Ends up in prison for a while. You know, the only thing that really gets him on the straight and narrow is like, is being in prison, gets out, finds the podcast. You know, a 1c, low sixes. I said, How did you. What he goes, I'm just listening straight through. I'm just learning as I go, right? And I'm like, okay, like, this is proof of concept for me 1000 times over. Like, I don't know how many times somebody has to say something to this to me before I believe them, right? I believe them. This the podcast helps them, but everybody's not going to listen to it. What else do I do? I spent some money that I didn't, kind of have, and I opened up a group on circle. So circles like a platform that you might think of as like Facebook esque, but it's it's much better than Facebook, right? It's a great place to put a private group where people can hang out, but it's expensive, and the way most people pay for those groups is to charge people money to be in the group. I very much don't want to do that, if I if I can help it, and if it has to be like, I want it to be like a very, you know what I mean, like $10 a year or something simple to cover the cost of it. And I had to spend $5,000 just to make sure it was a thing that, you know, would actually work. And you know, could do what I expected it to do. I didn't have that money. I spent that money, and I've been setting it up in the background, and they just came up with the next piece that I knew was where I needed this to go, right? So now, in everybody's group, if you pay for it, there's basically an AI agent in there that is trained only on the information you give it. So I have been in my spare time feeding it the podcast got it, yep. And now you can go to a to a prompt and ask it some pretty complex questions and get back some very clear but thorough answers. That's cool, yeah. And so because that thing that you're saying should exist, you're not the first person to think that. And somebody thought that five years ago and 10 years ago and 20 years ago, and still, what exists is what exists, right? Like, no matter what you do, the human component lets you down at some point, like, somebody comes out, got a shot out of a cannon. Like, I want to help. I'm going to get on the phone with people and be a big brother and blah, blah, blah, and you do that five or six times you go, ain't got time for that. Yep, life gets in the way. Exactly right. So we need something that isn't going to get tired of answering simple questions that people have now, what's the rest of this? Is like, I've got to be able to say to people like, this is not medical advice. This is the component of why you don't see people doing stuff like this. Yeah, yeah. Nobody wants to put themselves

Adam 57:27
out. Yeah. I get it. Yeah. I totally get that. I do

Scott Benner 57:31
too, by the way, but I believe in the gap that you're talking about. And I know, and I think the other

Adam 57:36
thing Scott is it's not just that the gap exists, it's that not everybody consumes information the same way, right? And so not everybody can consume information and understand it in audio. Yeah, right. They need to read

Scott Benner 57:51
it. I believe that some people are readers, some people are listeners, some people are visual. I think I just said it on the podcast, like in an episode you'll hear this week, but I employed a girl to in sign language, do the entire bowl beginning series on video. And I said, if you hear me say it at some point like I'm not doing it, just so that, you know, deaf and hard of hearing people have it, I'm doing it because it'll have a visual aspect to it. So maybe the people who could listen, but need something to look at while they're doing it. Like, I'm like, maybe that would get them to look Sure.

Adam 58:27
I mean, and I think, like, there's so many times I've listened to the podcast, obviously, like in my car right driving home or driving to work, and I'm like, Wait, what did they just say? What was that? What were those numbers like? Going to try to write that down right now I'm going 70 miles an hour. It's just like those, like earmarking a page somewhere, like having a resource like that to go back to to get that information. I think that's like, critical.

Scott Benner 58:50
Well, what I'm saying is is like, imagine if you could go into a private group and you could talk to people if you wanted to. You could start a post up and say, Hey, I was listening to this and this happened. Or you could just go to like, that chat bot and say, you know, in this episode, I think I heard something about this, like, can you find it for me? Yeah, I got it. Yeah, that's a really That's powerful. It's going to be awesome. And that's really cool. And I can't say who, because they're not doing it for this reason, but one of the companies I do business with gave me the $5,000 to cover it. That's awesome. I wish I could tell you who they were, because it's not even, like, it's not a branding thing, like, they're not, they're not going to get anything out of it. They're just supporting a thing I'm trying to do

Adam 59:30
that's great. Yeah, I think that's wonderful, because that's the, that's the spirit of it, right? Is it's, I think it's trying, I mean, and you've been doing this with all that in mind, right? It's it's to be in service of others. It's to help others that are in need.

Scott Benner 59:44
I just really think it, it's the only thing that makes sense, if it ends up costing something for people like, you know, if I can't talk the money out of somebody again next year, or something like that, and it has to keep going. Or, you know, the truth is, if the podcast comes to an end at some point. But this thing is still very, very. Valuable. I might have to charge a little bit of money off off of it, just so I can, like, afford the time to spend on it, you know. But for now, you know, I make enough off the podcast that, like, making this website too is not, it's not a drain on me, and I'm paying my bills, and my wife doesn't think I'm a, you know, a lay about. I'll figure it out as I go. Like, I can't promise you that if you're listening to this five years from now, years from now, the thing doesn't cost 20 bucks a year or something like that.

Adam 1:00:25
But at that, I mean, that's a reasonable barrier to entry, though, right?

Scott Benner 1:00:29
What you see in a lot of these private spaces is they're charging people 1000s of dollars a year to use stuff like this. And I just, I'm not down with that at all. Like, I can't, yeah, that's

Adam 1:00:39
like, buying a book, right? Like, that's effectively, like, I'm gonna buy one book on diabetes a year. It's the same type of thing,

Scott Benner 1:00:44
right? It's not the worst thing in the world that's gonna happen to you. Like, and listen you, I could easily make the argument like that, $500 a year wouldn't be tough, but I do think it's prohibitive. Then I wouldn't want it to be prohibitive to people, just the same as the podcast. I've kept the podcast free for people because and I take ads so I can keep the podcast free, and I've done that so that everybody has an act has access to it. And, you know, I don't want somebody walking around not understanding something as simple as pre bolusing because they couldn't come up with $5 a month to listen to a podcast. It just the money's, yeah, I don't want to be in that situation. Now, listen, will I, you know, get to the end of my life and think, oh, would have been cool if 7080, 90,000 people would have sent over $10 a month. Sure, that probably will get into my head at some point. But like, for right now, I'm very focused on doing the right thing, so, yeah,

Adam 1:01:35
I mean, and that's not why you started it right, and it's organically grown into something different than what you started it

Scott Benner 1:01:41
for. Yeah, I just don't have the feeling about it like that. I got this text the other day from someone, and I'm finding it right now for you. So this person is online, I'm not gonna say where, and they follow an account, I'm not gonna say on what platform, and they think they're just following a diabetes account, and as soon as they follow the account, they get a DM, oh, hey, do you have a kid with type one? And the person responds back and says, I do. And it starts with like, Oh, my heart goes out to you. You know, happy to have you here. Thank you. How old when they were diagnosed? And this person opens up and tells a little bit of their story about their kid, tells them how well they're doing and everything. Actually, the person says, like, we found the Juicebox podcast. We're doing great. I want to give them credit, etc. Oh, that's great. Congratulations. It's amazing what can be done. You can move past just the staying alive part and get to the thing, and then the person's like, oh, you should check out the podcast. And then there's no direct answer to that question. Sounds like you're doing well, but if you ever need more support or someone that does you send them my way, yeah. Oh, what do you offer? And then a link. Here's some video of an explanation of our programs. Now here you go. The person says, How much does it cost? Did you get a chance to watch the video? I did, but I didn't hear anything about the cost. Oh, we have a few different payment options, but you know, we can go over that during a free call. If you're interested, I'm not personally interested. I totally understand that your calls built around you know what it is, and that you have to make money everything. Just want to know what it costs. Thanks for your consideration. I want to be as helpful as possible and agree on transparency. The call is free, yeah, but what does it cost after that? No answer. Will not answer them. That's pretty hard sales like you're going to get on that call, that person's going to say something to you that is going to if you're lost. Go make you think, Oh, my God, I don't need to be lost anymore. And then it's not going to matter how much they tell you next you're going to pay them. And they know that and that, I think that sucks, so it's awful, yeah, but

Adam 1:03:57
unfortunately, I'm not surprised that that's in existence, and that people are doing it that

Scott Benner 1:04:03
way. There's so many accounts at this point, and some of them have podcasts. They're not really even podcasts. They're just fishing. They're like, here, it's just a little tickle your with a feather. You know what I mean? You're like, oh, that does sound boring. What's next? Oh, I gotta, I gotta, I gotta, click on this link. They'll tell me the rest here. Yeah, they'll tell you the rest after you give me your credit card. And again, like people got to make money. I'm not. It's fine. Like I'm not judging you. I'm telling you I'm not okay with doing it that way, like I'm just, I'm just not, yeah, you being healthy shouldn't cost you 1000 or 2000 or 3000 Now, listen, if you have that money and you want to do that, I don't care. But most people don't have that money, but they do have the dire feeling.

Adam 1:04:43
And I think you see similar situations with, like, some of the camps that get put around right, where there's really expensive camps to send your kids to, oh my god no, right? And it's like you're just gonna throw that money, like you're just gonna do that, or you're gonna go find one that's

Scott Benner 1:04:59
free. Me Listen, I gave a lot of Camp away this year. Yeah, I saw you. I saw that camp Sweeney gave me a lot of, like, free spots to give away. And there's no doubt, like, it helps them, like, you know, draws attention to the camp, obviously, but my God, I think it's like $4,000 or something like that. Yeah, that's crazy. Yeah, it's like, three weeks. Like, don't get me wrong, it's not, like, it's not, it's not over a weekend or something like that. But still, again, if you have $3,000 to send your kid to camp with, then that's awesome. But like, if you don't, then, I mean, at least that's just camp. I'm talking about being healthy.

Adam 1:05:32
I mean, that feels like the athlete analogy, right? It's like, oh, you have that at your disposal, therefore you'll get better care, right? Versus the average person who has this disease

Scott Benner 1:05:43
anyway, so I'm doing my best I can with the information I have to not put a wall around it that people can't get over. Yeah, I think that's huge. Yeah, I appreciate it, and at the same time like it's just not free, I don't want him to hear this and feel bad, because he's a great guy, and it's a very fair price, and nobody is ripping me off having the podcast edited just so it sounds good.

Adam 1:06:06
It costs more than you think. Oh, yeah, that's someone's time.

Scott Benner 1:06:09
Yeah, that's his business, and he deserves it, like, I'm not saying otherwise, like he and he does an awesome job. Like, and I was listening to the podcast today in my car, and I was like, God damn, this sounds like I switched from a podcast that's probably one of the top 50 podcasts in the world. To mine in my car, mine sounds better. The audio is better. It's clear the edits are better. Rob does an awesome job. That's not my point. My point is, is that someone pays Rob and that someone is me. Yeah, right. And the thing the platform that's me. And you know, at 1130 at night, when you're a little drunky, drunk on Facebook, and you're calling somebody a name, and that gets taken off because it's mean, that's me too, yeah, right. Like, you know, I'm out there, like, swinging with both hands, and then I see somebody out there, like, sending this message to somebody just, like, just get on the call with me, because I'll sell the out of you and take your money. You know what I mean. Like,

Adam 1:07:02
do you think, as you're talking through all this has got me thinking, Do you think that as Arden gets older and eventually doesn't require, like, I don't know how engaged you are in supporting her now, but like, eventually it'll be zero. Do you see you backing away from this? Do you think that that'll be a natural progression.

Scott Benner 1:07:22
I have to tell you that I don't know how life is going to go, but it's always been my kind of expectation that the podcast will drift to an end after she has a baby, yeah, because that'll be maybe the last thing.

Adam 1:07:35
Well, maybe unless her kids get type one, and then it's all, it's just reasonable,

Scott Benner 1:07:40
grandpa, I'll be making a pop when people are like, what's a podcast? And

Adam 1:07:44
you'll be talking about circle, and you'll be like, Oh, wait, he's so old, he still uses circle. They all get

Scott Benner 1:07:51
together on circle. Isn't that delightful?

Adam 1:07:53
Yeah, right. He probably uses Facebook too. Yeah,

Scott Benner 1:07:58
exactly. I mean, in my mind, like I've kind of thought, like, if Arden has a baby, that's my last because she has said to me privately, like, sometimes she'll be like, Hey, leave me alone. I know what I'm doing. Blah, blah, blah. And I'm like, right? And she'll go unless I get pregnant, I'm gonna want a lot of help then. And I was like, oh, okay, yeah. I mean, I think I've transcended the dad with a kid with diabetes moniker at this point. If I haven't, I'm overestimating myself, maybe. But, like, I've made the podcast big enough now, where people come on here to talk about diabetes stuff, it's more of a hub. So, I mean, I can still bring in doctors and people doing research and stuff like that, and I think this part of it letting people come on and have conversations that are actually entertaining, so that you can hear about diabetes without being bored to death. Yeah, I think I'm good at that, you know. And as long as you guys keep coming on here and telling me crazy stories, I think that'll all work out. I don't know. I mean, I've privately said I feel like I could do it for 10 more years, but that would put me in my early 60s. So Well, then there you go, yeah, and then I'll leave behind the stuff online for you guys to use.

Adam 1:09:04
It's impressive. You've kept it up with this type of cadence for this long

Scott Benner 1:09:08
Well, it is my job. So, like, you know, yeah,

Adam 1:09:11
it is. But still, you, I mean, people get burned out of their jobs, right? I mean, that happens. So it does. Yeah, I don't know, as you're talking through it, I'm just wondering, like, is Arden like the push right? And as she needs less and less support, does it just eventually fizzle? And I think, yeah, you're, you're seeing that a little

Scott Benner 1:09:31
bit it might. And at the same time, I'd say that the process of making the podcast gives me insight into people living with diabetes that not a lot of people have, because they're not constantly talking to people with diabetes and making a podcast and trying to figure out a way to make it entertaining. I think I can figure out how to meet people where they are with information that they need. Yeah, and the truth is, is that my listener base is so. Big that, if I say, let's try to go on circle, I might actually get it launched. You know what I mean? Like, if I say, like, you know, here's some articles about stuff that'll help. Like, I think I can get it out to people,

Adam 1:10:14
yeah, absolutely. That's like, Patreon, right? Like, it's basically like, Hey, I'm gonna go pay for some a little more content, right?

Scott Benner 1:10:21
Not even that. I don't think people have to pay for it. What I'm saying is, is that you can make whatever you like. You know, the ADA has great information. I'm sure you know what I mean, like, but people follow the ADA because they get diabetes. They go, Oh, follow the American Diabetes Association. But if you go, look at people's Facebook pages and groups, for example, like, even, like, big pumps or CGM or organizations, like, yeah, they have a lot of people following them, but look at their engagement. There's no engagement whatsoever, right? And that's because they're not saying anything, because they can't. So companies can't say anything, because the FDA, you know, gags them six ways from Sunday. So they can't, they can't say one thing or the other about they can't even tell you how to use their product. They can tell you, like, here are the instructions. Or ask your doctor. But if you jumped on and said, Hey, I have a question about setting up an extended Bolus, they'd be like, You should talk to your doctor, because we're

Adam 1:11:15
not allowed to say that. That's right, because we're not doctors. We just make the device

Scott Benner 1:11:18
so their content sucks because of that. That's why you see, like, Oh, here's people wearing our pump, or here's people wearing our CGM, or, like, you know, like, here's people holding our insulin pen, like, because they can't actually do community, and so I can, like, I

Adam 1:11:35
that's it, right? That's the gap, right? Is the commute. Is community, right? It's, it's a true community of people that want to help each other,

Scott Benner 1:11:44
right? But to your point, the reason like, why is my my Facebook group today has 65,000 people in it today, and five weeks ago, it had 60,000 people in it. Wow. So 10% Yeah, it went up that quickly in the last six like five, six weeks, 125 new posts a day, 8000 likes, comments and like reactions a day. There's no downtime in the group. Let me see if I can find it for you. It's kind of stunning. I

Adam 1:12:18
think in general, that can be a little overwhelming to the average person as well, for what

Scott Benner 1:12:23
it's worth. Can but they don't see it all because Facebook doesn't feed it all to them. Yeah, there's that too, so they don't. It's not like they're seeing 125 posts a day. Yeah, I get to see them, and it's a lot. But like, for example, the slowest you could get on my Facebook group would be that there are 75 active members on it, and that's at 2am Eastern Time. And in the last week, at 11am there were 332 active people. And there are usually between two and 400 active people in there every hour. Wow. So you're never going to be alone. Somebody's going to see I've even noticed, you know, posts that put up that get quick answers, like the person satisfied, and then the algorithm kind of stops feeding it after that point, but it still did what it was supposed to do. Somebody asked a question, they got an answer, and I think that's fantastic. Then there's ones that are, you know, their engagement is much larger. They're like, I'm looking at my top engaging post here from the last month. It was literally engaged by 11,000

Adam 1:13:28
members, you know. So I think something that's worth touching on a little bit is that in order to put a post up on Facebook, even though you can be anonymous, I think it still takes a certain amount of vulnerability, yeah, to go up and ask for help, ballsy, you know. And I think that's the other thing that I feel pretty strongly about, is finding a way to make people comfortable in being able to ask questions that they may come off like, these are gonna be dumb questions, but like, everybody starts from zero on this, you know? And I think that's where that human element for me comes in, though too, right is, and that's why my head went to like, local advocates, local organizations, yeah, human interaction with other humans that can truly, like, reach out and physically help guide you. How do you bridge that gap, right? How do you make people look comfortable going and asking those questions if that's what the resource availability is going to be? Yeah. So

Scott Benner 1:14:25
I think the answer is, is that They lurk and they get their answers by lurking, or I put in a prompt where they can ping it, because, yeah, it doesn't need to be 65,000 people. If my circle group gets up to 5000 people and they're talking to each other in there, that chat bot won't just have access to what I feed it, which is the transcripts to the podcast. It'll also have access to the conversations people are having, so you can ask a question and it'll literally give you a link. Like, trust me, if Facebook would just have done this, I wouldn't have had to go somewhere else, but they're never gonna do something like this. Yeah. Because this actually helps people, and it might get them out of Facebook. You know what I mean? Imagine you can ask a question, be taken right to a conversation that's already happened, and you can watch it like right in front of you go, Okay, this is it. And then it can say to you also, this episode. In this episode of the podcast, click on that link. It opens up the the episode. There's a player right there. You can listen to, yeah, that'd be spectacular. That's how it's gonna go, yeah. But so there's this thing called the they call it two different things. It's called the 99 one rule. So it's 90 dash nine dash one rule. Or some people call it the participation in equity inequality. It's about online. What it means is that 90% of users are lurkers. 9% of people contribute occasionally, maybe by liking or commenting on a post. But only 1% are highly active, like creators, making posts or replying. So what it means is, is that out of every 100 people, only one person has it in them to make a post, to reply to a poster, to engage with somebody consistently, yeah, and that's pretty consistent, because the first time I heard about this was back when I was blogging, and a company came to me and they were excited about how much activity I had on my blog. And I was like, I like, I don't understand, like, I know how many, like, 10s of 1000s of people wrote, read that thing I wrote, and there's, there's eight comments on it, and they'd be like, No, that's a lot. And I'm like, and I kept thinking like, No, it's not, but it is because of the 99 one rule, which says that only 1% of us have it in us to like publicly talk like that. So what's different? I think it's just numbers. Now, it's still just one, probably, but it's one of 65,000 instead of one of, you know, 10,000 or 20,000 people reading. And I do think that the community is overwhelmingly so comfortable and friendly that it does open people up to speaking, and it allows you to make anonymous posts, which I think is funny, because when that came up, I had the I'm allowed to shut off anonymous posting if I want to, and I'll tell you that it would make moderation much easier, but I think it's a value for people, so I leave it on. Not everybody's gonna be comfortable putting their name out there. Yeah, I agree. So anyway, you're very kind to say all that stuff. I am trying my hardest to make stuff that's valuable for people, and I'm trying to stay ahead of the curve. I think I'm way ahead on the AI thing. Honestly, Arden had to go to the emergency room this week to get IV antibiotics, right? So it's not she's fine, but like she she gets tonsillitis a lot, which is the thing maybe won't happen to her anymore because she's thinking about having her tonsils taken out. Gets really bad. She gets an antibiotic. Couple three days go by. Nothing gets cleared up, goes back to the doctor. Doctors like, let's switch you to a different antibiotics, which is another one, another three days goes by. Four days, she's no better. Doctors like, hey, you know it was Sunday night at that point, the doctor's like, I think you just need to go to the emergency room. Like, Arden tonsils were overlapping, like, in the back, like, like, blocking her air. Like, it was pretty bad, right? So in the 45 minutes that it took me to get the doctor on the phone, speak with the doctor, make a decision, go to the ER with Arden on Sunday night, I went to chat GPT and talked the whole thing through with it, and I am not telling you a lie, everything that was said to us from the moment we got to the hospital, to the moment we left the hospital, chatgpt told me was going to happen. It was 100% right, meaning that if I knew how to start the IV and had access to what they gave me, I did not need any of the people that I spoke to. So I'm not telling you that like I went in there and found the answer and then told them what the answer was. I asked that thing what was going to happen, and it's exactly what happened. And then I went back later and looked even the way it explained things was, I'm telling you, almost word for word, the words that the doctor used to explain what was happening. And I realized that doctor is just going to it's a pool of information that they have. That's right? It's clinical. That's it. It's clinical. Yeah, it's a clinic. It's textbook, right? I mean, that's a it's going to work really well for medicine, is what I'm saying. Yeah, absolutely, yeah, yeah. You're, you're, there's static answers to static questions. And the truth is, is that you have a better chance of the AI being able to access all of it and spit it back out to you than you are for the doctor to remember it. So, like, you know, sure this was tonsillitis, so she spit it back out perfectly, because she probably goes through it 50 times a week. But what happens when it's something like, Why does my blood sugar go up when I eat fat and protein? And it's not a thing they always talk about. Like, then they go, I don't know. Maybe your settings are off,

Adam 1:19:37
you know? Yeah. I mean, I also think that there's some nuance to some of that that, quite frankly, doctors who aren't living as type ones aren't going to even be able to respond to

Scott Benner 1:19:48
Yep, but that nuance exists in the conversations between Jenny and I,

Adam 1:19:52
yeah, exactly right, and that's why the community, it's almost like the doctors are there, I don't know, to get you the tools to be able to. Solve the problem, but then you need the community to help you fine tune the knobs and the dials

Scott Benner 1:20:04
on them. Yeah? And then the unspoken part, Adam, that we don't talk about, that I know because I speak to doctors behind the scenes and they don't, all you know, say this out loud is that not everybody has the same ability to work through those problems, and the ones who don't get left by the wayside as patients? Yeah, right. Not everybody's thinking on the same level, no, and

Adam 1:20:24
that's something I am extraordinarily grateful for, is that I have the ability to study it and understand it and feel comfortable in

Scott Benner 1:20:34
making decisions. You got to point an engineer's brain at diabetes. Yeah? My

Adam 1:20:39
endo is like, you're hate, can I hate this Adam, but you're the perfect diabetic patient. Like, you're the perfect person to get diabetes. Great,

Scott Benner 1:20:47
awesome, yeah, because the way your brain works lends itself to this process.

Adam 1:20:51
Yeah, and not, it's not just that, it's that I also have good insurance and I can get, yeah, good medical care. Like, I can afford extra sensors when I want to buy one, like, I can do that. Like, not everybody has that at their disposal. Yeah,

Scott Benner 1:21:05
yeah, no, yeah. You just so casual. You were, like, I wear two and I'm running. And there's some people are running around, like, I'm gonna run out of these things. Like, it's a major, you know, that's right, yeah, not everybody's got the same situation. I gotta

Adam 1:21:15
skip a couple days because I won't get like, those are the things that I think we can take for granted is that not everybody has that at at the disposal?

Scott Benner 1:21:25
Sure. No, it's easy to forget. If you have it, that's for sure. Yeah, yeah, you take it for granted. Well, even the thing I'm doing, as much as I think it's going to be valuable for people like you got to be online. You have time. You have to still, it's, there's still barriers to entry. Like, you know what I mean? Like, not that I'll put up the barrier, but you might have some barriers of your own that stop you from getting to it. Yeah. So we'll say, in the end, if people just have good ideas and try them, like, I think that's that's a great thing. That's all I'm doing. If it works, it works, and if it doesn't, I mean, I'm out some money and it didn't work, but I think it's a solid ideas. Tried, yeah, yeah, exactly. And I'm not a person, like, you don't know me, know me, but, like, I have a lot of ideas. I don't move forward with most of them. I really need to see a path to success before I put something into motion. I know that there's that they used to call it the millionaires idea of like, right? Like a millionaire, but goes bankrupt four times or something before they make money, or something like that, like, I'm not that guy, like, I'm not moving till I see the end. So when I do, I normally have some success, because it's been thought through, like, you know, six ways from Sunday. So I think this is gonna work. The last bit is for you guys to actually do it.

Adam 1:22:37
And I think the hardest part on a lot of things, though, is just the first few steps, right? And just getting started.

Scott Benner 1:22:43
It sounds so cliche, but just doing it, really is most of it. Yeah, this needs you to go, you know, download the circle app and, you know, and and actually go on there and make some conversations with people, and get the thing growing so that it works. That's the one thing I can't like. I'm not able to control that, but I can put it out there, and, you know, I can show it to you and show you how it works, and hopefully you'll find value in it. And, yeah, that's my goal, is that if it has value, you'll know, because people will use it, and then I'll know it's worthwhile. So anyway, Adam, you were great. Rob is, uh, right now he's like, stop talking. Been talking. Sure, I know.

Adam 1:23:21
Keep talking to like that's the thing. We didn't even get to half the stuff I thought we would, which is always funny.

Scott Benner 1:23:26
Sorry. I do appreciate you listening and for being on today. Thank you very much. Of course, hold on one second for

me, this episode of The Juicebox podcast is sponsored by Omnipod five. Omnipod five is a tube, free, automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes when they've switched from daily injections, learn more and get started today at omnipod.com/juicebox of my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox today's episode of The Juicebox podcast is sponsored by the Dexcom g7 and the Dexcom g7 warms up in just 30 minutes. Check it out now at dexcom.com/juicebox, hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. 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 wayrecording.com. You.

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