#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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