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A
Hello friends. Welcome to the Juice Box Podcast. From my family to yours, I want to wish you a happy holiday.
B
Hi there, My name is Sarah and I officially have latent Autoimmune Diabetes of adulthood or lada.
A
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B
Hi there, my name is Sarah and I officially have latent autoimmune diabetes of adulthood or LADA for seven years and I have recently went through a really life changing, really informative endocrinology appointment which felt like it gave me some power back with my disease process and really giving me options, which is what motivated me to reach out to you to be able to share, because I anticipate there's other folks who are in the. In a similar situation and maybe, maybe this could benefit them.
A
I'm not 100% sure what you're going to say, but if it goes any way, the way I expect, I think you're 100% correct. So, hey, what do you do for a living? Most people, you guys don't know this if you're listening, but most people, I'm like, go ahead and introduce yourself when you're ready. And it'll be like, hey, I'm. You just launched right into it. Did you practice that in front of a mirror or.
B
No, but thank you for that.
A
You don't have a job that requires you to speak to people.
B
Well, I do. Yeah, no, for sure I do.
A
Okay. You don't want to tell me what it is?
B
No, I'm happy to tell you what it is. I am a nurse and I spent the bulk of my career working in a peds ICU in the beginning, and now I switch to safety and quality and I work for a big hospital system and I am in a ton of meetings. I connect with people a lot. I hope I come across as calm and informed and able to communicate. But we'll see. I mean, this is just the first minute. You never know how it will go.
A
Well, I would love to be in a meeting with you.
B
Well, thank you.
A
You have a nice mix of able to communicate. You seem assured of what you're saying and you were, you know, timeline wise. I like. I like the, I don't know, the order in which you. You laid out what you said. So I thought it was really great. You listen to the podcast?
B
I do.
A
Do I seem calm when I'm speaking?
B
Yeah.
A
How do I seem? Because I think I seem scattered.
B
I think you seem scattered too, but that doesn't mean you're not calm. Like, I think you're all over the place, but that's. You still have a calm, confident presence.
A
Okay. It's interesting. I always wonder, could I speak linearly? I don't know that I could like, you know, start at A and end at Z. I don't know if I could do that or not.
B
Well, if your brain doesn't work that way, I just. It just doesn't.
A
Just doesn't. But yours does.
B
Well, I don't think so. I mean, I could be scattered. It's still early.
A
30 minutes from now, you're just going to be like, I went to the circus. I'm like, wait, what? A little behind the scenes picture of this. I believe that an hour is a long time to talk. Not for me. I'd go listen to a two or three hour podcast if I was interested. I'd have no trouble with it. But I think that for most people it's easier if this conversation you and I have really ends up being eight or nine short conversations that are somehow tied together than telling like a tome. And I think it's more entertaining that way too.
B
That feels reassuring because I feel like there's certain buckets of my story that breaks down into several little stories. So that's great. And then I don't have to talk for an hour, but we can have this great dialogue about it.
A
Perfect. Let's start. Seven years ago you said.
B
Yep.
A
How old were you then?
B
I was 37.
A
Okay, and now you are seven years later. But you don't have full blown. Here it comes. Type 1 diabetes.
B
I think that I do. I mean, this has been such an interesting ride. I like, fully am insulin dependent. I have a lot of Type 1 history in my family. I have the anti or the antibody. Thank you. Yep. For type one and it just happened when I was later, but it had a slower progression. So I. I've been referred to as type one a lot of my seven years and then also recently just said, nope, you're LADA and you can be treated as type one or type two.
A
Okay. How many other people in your family line have type 1 or other autoimmune issues?
B
Yeah, I have a sibling who has type 1 who was diagnosed at like 9, a great grandfather who died from type 1 diabetes at like age 29, before insulin was available. I have my dad who was diagnosed in his 50s with type 2 initially, and then 1.5 or Lata. And there's some Ms. Diagnoses in my family. Hashimoto's for me, Hashimoto's for my mom. So it's a smattering.
A
Unless there's 50 kids in that family, it seems like a lot.
B
Yeah, it's a lot.
A
Your sister was diagnosed at nine, so you grew up around Type one. I want to understand if. Does hindsight let you think, oh, I could see it coming now, even before your initial seven years ago, like, or was there no way to know this was going to happen to you until it happened?
B
I appreciate that question. So it was. It was my brother. Just so I don't. In case you correct that. No problem. My mom was such a great advocate for us. So after my brother got diagnosed, she enrolled us in Trial Net. So I was immediately tested for antibodies and I was GAD positive. So that was at 11. 11.
A
Okay.
B
So my mom knew, like, she told me kind of what that meant. Like, there's a higher chance of you developing type 1 diabetes, and we just don't know what, when or what. What really triggered my diagnoses was having my third kid. Like, it. It felt like that was totally that event that pushed me over, that pushed my body into. Into this.
A
Yeah, like your kid grabbed a ripcord on the way out or something.
B
Oh, totally. Yes. And that's totally his personality too. Like, how can I just blow things up? And what's this switch?
A
Mark, don't touch. Boom. Mom has diabetes. Okay, so did your mom tell you when she did Trial Net, like, did you grow up knowing that this might happen?
B
Yeah.
A
Oh, you did.
B
But I, you know, as a. An 11 year old, just growing up, like, I was like, okay, that that's something that could happen. But of course you're like, that will never happen to me. So even though I knew that, I didn't actually think it. It would.
A
Did it leave your mind as time passed on or did you always have the same level of like, background concern about it?
B
I would say it left my mind. I also am pretty healthy, aware, and maybe hypochondriac is a better word for that. Like just always worried something is wrong and so also have a tinge of that and I think probably helps me, you know, catch it early.
A
Gotcha. I wonder if it's because someone told you you might get type 1 diabetes.
B
Totally.
A
We'll never know. I'd love to rerun your life again, not tell you and see if you're a hypochondriac.
B
I know. You never know.
A
Yeah. Taking away the fact that you had the Trial Net experience, is there anything about your life prior to your diagnosis that pointed to it? Forget that you knew it was coming, were there? This is kind of great because if you're a hypercontract, you were really paying attention to what was happening to you. Like, could you look back now and write out the roadmap? Oh, yeah. When I was 14, I lost a bunch of weight and gained a bunch of weight and how about that? Like, two years later I got Hashimoto's or like, is there anything like that that sits in your memory?
B
I don't think so. I was an adult when I was diagnosed with Hashimoto's. I had gestational diabetes with all three of my kids. Excuse me, Insulin dependent. But I don't think there was anything that said, yes, this is going to be my future.
A
Okay. I appreciate answering because I'm trying to figure out, you know, I'm just trying to look backwards to see if there's signs or things that people could be paying attention to for sure. Yeah, right, right. What happened that led to you thinking like, oh, here it comes.
B
Yeah, I so. Gestational diabetes with all three. My first two kids, it was like, I delivered. The placenta is out. My blood sugars returned to normal. There was no issues. My third kid, it was like a couple hours after delivery, they checked my glucose and it was high. Like, it was like 180 or something. And I just immediately felt like, this is not. This is not good. Like, I have delivered this kid. The placenta is out. These. These glucose levels should be back to normal. And so that was my first. Something's going on. About a year later, I had a checkup to just check an A1C post gestational diabetes, and it was elevated.
A
Question.
B
Yeah.
A
First two pregnancies, baby comes out, you deliver the placenta, your blood sugar goes right back immediately.
B
Yes.
A
Yeah. Okay. That's been my understanding, talking to other people. So then having had two experiences that way. A brother would type one, a dad would type one, a grandfather who wasn't lucky enough to be born before, I guess, 19, 21 or something like that. Why, when you had the elevated after the third, didn't you raise your hand and go, hey, I don't want to wait a year to find out about, like, what happened in that. That moment there?
B
I think probably life. And having three kids and just being overwhelmed was enough to distract me, like, okay, crap. But also, by the time I discharged, my glucose level is back to normal. So it. It was like this tiny red flag that I was able to suppress.
A
Got it. Okay. Thank you. Okay. Please keep going.
B
Yeah. So I had a elevated A1C, like, in the nines. And my endocrinologist said, hey, I think this is type 2. Let's get you started on metformin. And so started that I got kicked out of trial that got started on metformin. Really walking down that type 2 diabetes diagnosis. Like, what does this mean? Is metformin all there is? And also, still having three young kids, it was enough of a distraction for me not to really go down the rabbit hole where I, you know, frequently go today.
A
Did that doctor know about the type one in your family?
B
Yes.
A
Fascinating. Okay, yeah, sorry. So what is that rabbit hole of, hey, you have type 2 diabetes. Here's metformin.
B
I mean, I think it would be. Wait a second. I have all this type one in my family. Let's do some digging. What the actual heck, you know, like, it doesn't make sense for me to have type 2, but I don't think mentally I was there.
A
Okay, because you had antibodies. The doctor knew that.
B
Oh, good question. I don't know if they did. They may have not. Because when you enroll in trial and that that's kept in trial and that, it's not like it gets to your health record.
A
Right. And you didn't mention it?
B
No.
A
And you would describe yourself at that point as overwhelmed?
B
I would say yes. Like, I had kids, like, anxiety really ramped up for me. I had some postpartum depression. So, like, my. When my kids were young, it was rough for me. So I think that's just one more thing on top of a complex family life that I either just couldn't quite deal with or couldn't quite dig into.
A
If I was a therapist, I would say, I'd like to acknowledge that. I appreciate that. But instead, I'm going to tell you that I really appreciate you digging into that with me, because what I think it does for other listeners is, I mean, like, look at Sarah. Like, she knew she had type 1 diabetes. Like, right? Like, she knew she had auto antibodies. She knew she had type one in the family. She, like, she. You're listening to her speak. She's a bright lady. You're in healthcare. Right. Like, and still the wash of life was a. Somebody said type two and your feet came out of the sand and you just went out to sea with it and just were like, okay, I have type two. Just like that. Yeah. So I hope everybody hears that and realizes that when you're beating yourself up, when you have no context for this whatsoever and you know, you or your kid end up in the hospital and you're like, oh, like, how did I not see this? Like, is it really easy not to say it? So, yeah, that's all. So thank you. Unless you think the postpartum and stuff like that has impact on the story, I feel like you should just move forward. But if you think it has impact, you can tell me about it. Today's episode is brought to you by Omnipod. Did you know that the majority of Omnipod 5 users pay less than $30 per month at the pharmacy. That's less than $1 a day for tube free automated insulin delivery. And a third of Omnipod 5 users pay $0 per month. You heard that right. Zero. That's less than your daily coffee. For all of the benefits of tubeless, waterproof automated insulin delivery. My daughter has been wearing an Omnipod every day since she was 4 years old and she's about to be 21. My family relies on Omnipod and I think you'll love it. And you can try it for free right now by requesting your free starter kit today at my link omnipod.com Juicebox Omnipod has been an advertiser for a decade, but even if they weren't, I would tell you proudly, my daughter wears an Omnipod omnipod.com Juicebox terms and conditions apply. Eligibility may vary. Why don't you get yourself that free starter kit? Full terms and conditions can be found@ omnipod.com juicebox 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 usmed usmed.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. USMED carries everything from insulin pumps and diabetes testing supplies to the latest CGMs like the Libre 3 and Dexcom G7. They accept Medicare nationwide and over 800 private insurers. Find out why USMED has an A rating with a Better business bureau@usmed.com or just call them at 888-721-1514. Get started right now and you'll be getting your supplies the same way we do.
B
Yeah, I don't think it does have impact on the story. It just provides context about where my mental state was when all this was happening.
A
Okay. Okay. So please.
B
Yeah. About a year later, still on Metformin, I suddenly started dropping, you know, £15, which I was super pumped about. Cause I was like, man, I'm like eating all this crap and I'm weight This is amazing. And not. No red flags going after me. Just, like, really loving life. And then I remember working and being like, dang, my fingers are, like, so tingly. And this has been happening, like, every single day in the afternoon. Like, what the heck is going on? And it was those two things that I probably sat with for a month. Like, I'm losing weight, my fingers are tingly, and not quite ready to acknowledge it. And then I just. Finally, one morning, I woke up and checked my blood sugar fasting, and I knew it was going to be terrible. And it was like 380.
A
Oh, yeah. And there you go. You said, I don't have type 2 diabetes.
B
It's like, damn it. Yes, here it is. And that was it.
A
I thought the tingling was just an alarm to remind me of how awesome and skinny I was.
B
Totally.
A
I've bought so many great clothes in the last month.
B
I know. And now. Dang.
A
No, I hear it. Okay, so what do you do? Do you go back to that doctor and you hit him with a rolled up newspaper or how do you handle it?
B
It was interesting. So I called my endocrinologist and said, crap, my fasting was 380. What do I do? And, like, it was so interesting because I don't think this would happen with, like, regular people who maybe aren't in healthcare who didn't have the gestational diabetes diagnosis. But literally, it was over the phone, like, you're starting humalog, you're starting long acting. Go pick it up. This is starting today. Start checking your blood sugars. We'll get you in an appointment when we can. And it's not for, like, four weeks. And so I just don't think of any scenario where someone with this new diagnosis is managing that on their own without actually going in. Does that make sense?
A
Yeah. Well, it feels positive and negative to me. It feels positive that the doctor was like, didn't fight you and say, no, we'll give you more metformin. What have you been eating? Like, that kind of thing. But you didn't get that. You got. You got, oh, gosh, you know, capitulation. Same doctor that gave you the type 2 diagnosis?
B
Yes.
A
Okay. And. But on the other side of it, is it because you're in medicine, do you think that they were like, oh, she'll know what to do. Here, take your insulin?
B
Yes, I totally think so. Because they knew I was a nurse. They knew my mom was a diabetes educator. Like, we had. Of course I had the resources. And so I'm not faulting Them for that. It really just was like, I can't believe that happened like that.
A
No direction, education, anything at all. Just we'll send some scripts over and rock and roll. You get going, get started.
B
Yep.
A
How did you figure out. I mean, you go to your brother or how do you figure out how to get your. Even. Like, choose a amount for Basil, for example.
B
Yeah. I think I leaned in on my mom. Just her. She had the knowledge it was okay, try to do this many units of insulin for this many grams of carbs, and then it was just off and running. It was trial and error.
A
Well, your mom worked for, like, Medtronic or something like that.
B
She worked for Medtronic and she also worked for Tandem.
A
So you go to your mom who raised a kid with type 1.
B
Yep.
A
Has. Has the background, you know, professionally to some level or another, and you go mdi.
B
I go mdi.
A
Okay. And you're. How much did you need in the beginning?
B
Oh, gosh. Like, you will be really testing my memory. I remember it was like, keep under 20 units a day. That was the first, the first prescription.
A
I was going to guess, like, a lot less than now.
B
Yes.
A
Or not really.
B
Well, yeah, now it's a little bit different, but yes, like at the peak, a lot less than where I started or than where I got to.
A
Excellent. So, okay, so you go to your mom, but then you're not. I mean, where are you? Postpartum? How old's your youngest at that point?
B
At least a year, not quite two.
A
Would you still consider yourself in that malaise, that haze there?
B
No, I think I was out of that. Yep.
A
Okay, so you're a little more clear minded at that point. So explain to me your mindset about the diagnosis being thrown into it. Like, I'm really interested in those first four weeks before you get to the doctor.
B
Mm. It was a ton of denial. And that actually lasted a really long time. Like, this is something I'm doing today. This is something I'm doing during this hour, but it's not my. The rest of my life. I. I just like, could not. Could not get there because of how almost like, devastating it feels to, you know, to get that. That sinking in feeling, to be like, oh, my gosh, this is the rest of my life. And I just could not. And so I handled it almost like I handled work sometimes. Like, there's a critical situation, you know what to do. You have the training to do it. Just do it and get it done. And make sure your glucose levels are in normal range.
A
Okay. And I'M sorry to ask, but you. You didn't go to your brother. You're not close, or you are close, but you didn't occur to you to go to him?
B
Oh, for sure. Like, I. My brother knew, my dad knew, my mom knew. I mean, my whole family knew. We talked about it, like, processed it, and it sucked. But his journey was so much different. Like having being diagnosed at 9 or at 7 or whatever it was. And then this kind of slower onset. It just was different. The nice thing was, is it opened up this channel of communication between all three of us. My dad, my brother, me. Like, we're in this little tribe together.
A
Yeah.
B
And then this is a little bit of a tangent, but I quickly advocated to get on a pump. I quickly advocated to get on dexcom. And at that point, neither my dad or my brother were on a continuous glucose monitor. So literally within 30 days of this diagnosis, I was on one. And, you know, they've been on this for years.
A
Yeah. I was going to ask, like, was your dad's, like, the entirety of his advice, like, don't eat that toast? I don't know. I give myself the thing, and I try not to eat bread. Is that, like, you know, is that how he's managing? It was how he was managing it.
B
Okay.
A
Did your brother follow suit with that management style? More so. I. I know it's hard to, like, call, because it feels like you're calling him out now because now you know how to live with diabetes. You know what it really means to say this out loud, but do you think he was doing as well as he could have been?
B
No. I would say no. And I. I could say that to his face, for sure. And I also think he was doing what he could with what he. What. What was going on in his life. And not like. Not like he had a ton of stuff going on, but it's. It's a lot. And he was. And he's had it since he was young. And it just.
A
He's older than you.
B
He's younger than me.
A
Younger than you. So how. So he grew up with it through the 80s.
B
Through the 80s. Yep. Because he was born in, like, 82.
A
Okay. So he probably got Lantis and Humalog at the very beginning. Atlantis and Humalog.
B
Yep.
A
Yeah. Okay. But. And so I know what the tools were like back then as far as how they were communicated to people, and it really was about, like, testing periodically, and it's not. I don't think it nearly is what it was. So your mom's understanding of management is back there as well. Ooh, speaking of your mom and your dad, you sound like you guys have a pretty close relationship. So this question's really just for me. Were they devastated when you were diagnosed even though you were 37?
B
No. I would say no. Yeah. And maybe that's just also their, like, Scandinavian roots. Like, it is what it is. Like, you move forward and it also is like this probably was writing on the wall.
A
Yeah. That you think they've been waiting for it forever. Maybe it was a relief.
B
I think they. Yeah. Knew that it was probably coming. Especially my mom knowing what the antibodies meant and knowing that I was GAD positive at 11.
A
You know, as soon as. I don't know, as soon as Arden was diagnosed a couple years later, we sent Cole to trial Net. He did not have any autoantibodies, but he did develop Hashimoto's a handful years ago.
B
Okay.
A
And I will admit that it took some effort not to look at him and think, oh, God, is he going to get diabetes? Every time I look at him.
B
Yeah.
A
And I still can't tell if it feels more possible because of my job. And I hear everyone's stories and no one comes on to tell the story of how they were this, you know, the. I don't know, the brother or sister of a type 1 and nothing ever happened to them. Like, nobody comes on to tell us. Every story I hear sounds like that or so I don't know if I feel that way because I hear the stories or because if it's a real anxiety, you know, and a genuine, like, back. Back brain concern. But somehow knowing that your parents. Because I know some people think of parenting differently than I do. Right. I'm sure we all think of it in a ton of different ways, but I feel like it's a lifelong endeavor. I just. I don't know if I could handle 15 years from now. Like. Like being 70 year. Will I be 70 and 15? Hold on a second. Jesus Christ. I will be. Okay. So I don't know if I. Oh, that was terrible. Now I'm upset. I don't know if 15 years from now I'm 70 years old and my, you know, I don't know, 40 year old son calls me up and says, hey, I have type 1. I don't know if I could handle it. Like, and I'm. And you're actually, your parents reaction is making me feel a little more like, maybe I can.
B
Yeah. And almost like a relief. Like, oh, my gosh, we made it to 40 and I'm of course not projecting that that's going to happen. Yeah, I have that same feeling for my three kiddos, like, just waiting for that diagnosis, which is terrible. And they all did trial net and they don't have the auto antibodies, and I will always be waiting for that for the rest of their life. So. Yes, I hear you.
A
Any autoimmune on your husband's side? I don't know if you're married still.
B
But I am still married. And no, there's no autoimmune on his side.
A
Okay. Is he just annoyingly healthy?
B
Yes. Which is awesome for him. Yep.
A
Awesome for him.
B
Yeah.
A
You said you have Hashimoto's as well?
B
I do, yep.
A
All right, so before we get into you jumping onto a pump really quickly, how old were you when you were diagnosed with that?
B
I was probably about 25.
A
Oh, okay. Managed with Synthroid?
B
Yep.
A
Did you have any symptoms even when you were medicated?
B
No, not really.
A
Okay, you've been good with that? You haven't needed a T3 to help or anything like that? No.
B
Nope.
A
Awesome. Oh, that's great. Any of your kids have Hashimoto's?
B
No.
A
No. How old are they?
B
They are 14, 12 and 8.
A
Oh, wow. And you're. Wait, and you're 44?
B
Yep.
A
Did you start a little late?
B
Start a little late for what? Kids.
A
Yeah. Yeah. How old were you when you.
B
30 was my first, kiddo. My parents were totally young, so, yes, they were totally done having three kids by, like, the time they were 27, so, yes, starting at 30 is later than what they did for sure.
A
Oh, your mom and dad are still younger then?
B
Yeah, my mom is 69, my dad is 70.
A
How do you like that? Can you still talk to them? You know what I mean?
B
Yeah. I have always loved that they're younger and always envisioned myself, like, being a super young parent, which I am what I am. You know, it is what it is. But I. Yeah, I always. I've always loved that.
A
Okay. You meet a guy late, you build a career first.
B
Like, I started building my career. I loved. I loved nursing and jumping into that. We. I didn't meet my husband till I was 26, I think.
A
Oh, and he's older than you or younger?
B
He's just a year older. So not. Not that much older.
A
So you waited till you found a decent one?
B
Yeah, and he's a decent guy. And we got married when we were 29 and then, like, surprise, then had a baby at 30.
A
Was three kids your goal?
B
It was. We didn't have a goal. We for sure wanted to try to have a boy and a girl or a son and a daughter. And our, we had boy, girl. And then we, we sat on that like, hey, maybe we're done, maybe we're not. And then it was just decided for us that we weren't done. And then we had a third.
A
Would you go to a wedding? What happened?
B
I know it was.
A
Yeah, I don't know. Caught me in a weak moment.
B
I made a weak moment.
A
So you jumped onto a pump pretty quickly. Did you go, what pump did you get?
B
I went to the T slim.
A
Okay. And back then, back then, but seven years ago, was there even bolus IQ at that point?
B
No, there was nothing.
A
Okay. I guess take me a little bit through your education process, because it was probably a self education, right? Or did the endo finally jump in and add value?
B
It really felt like a self education and partnering with my mom. Like, even when I got started on a pump, it was my mom that came over and like walked me through it while I was on the phone with someone trying to tell me, but really it was my mom working through it and showing me how to use it. And I remember calling my mom and being like, oh, my blood sugars are here. Like something's going on. Or this happened and this happened. And she would help troubleshoot with me, which I thought was super valuable because of course, your mom is just so much more available than any provider could ever be. And so that was invaluable for me. And it was trial and error managed by me, less by endocrine.
A
And how slowly was your ramp up in needs? How many months or years did it take for you to get to your insulin need that you have now?
B
I would say it was gradual but continuous. It was like every year I felt like I was taking more insulin. That was the most stressful thing for me is like, what the actual heck? Like this is just going to keep going for the rest of my life. Like every year I'm going to be taking more insulin every single day. Like, that's terrible. And it just, it felt like that was the journey that I was on.
A
So then tell me, would you prefer it all just happened in a moment or do you? I mean, I guess the question comes from a more like psychological side because I think health wise, you'd prefer that it to take forever if it could, right?
B
For sure.
A
So what's your look back on that?
B
My look back is yes, I probably have the preferred way of having it ramp up gradually, you know, every year getting more and More. And it was very distressing. Like the diabetes distress, which my diabetes educator shared that term with me and I really have globbed onto it. It just increased the distress every time I had to go up.
A
Do you have any of those feelings of your body letting you down? I guess this is probably a forward looking thing, but, like, Erica and I are starting to do a. A series around body grief.
B
Yeah.
A
And that idea of, like, how hard it is to live every day, like feeling like your body's not doing what it's supposed to do and all that comes with that.
B
I don't. I totally see that. And I don't think that was my experience.
A
Okay. Or just this. It was probably omnipresent, I guess. Like it's getting work. It felt. It felt like it was getting worse. Right. Making quotes. Yeah. So, okay, what made you want to come on the podcast? Tell me again. You. You went over at the beginning, but I'd like you to outline it again because I think I probably drug you away from it a little bit.
B
Yeah, sure thing. My diabetes journey, when it kicked off, just stayed the same. It's like, this is type 1. You're, you know, latter type 1, but usually referred to as type 1. Your C peptide is really low. It was checked one time and this is what your life is going to be. And probably a year ago, the distress for me was really picking up, like, doing a ton of research. Like, what else is there for type one? What else is there? This can't be. Can't be. Just try harder. And you're doing so much better than like 90% of my patients. But, like, that's not the goal I was looking for. It's like, I want. I want to have an A1C of someone without diabetes, and I want to be really tightly controlled and I want every single tool to be available to me, not just what the endocrinology team thinks is best for me. I want all the research, I want all the potentials. And so that's where I was sitting over the last year. I got a recommendation to try a new endocrinologist in the spring, and. And that was life changing for me. He really started at the beginning and said, I'm not going to write a diagnosis on your chart. We're going to see what the labs tell us and we'll go from there. And so it was this really full history. It was drawing every hormone under the sun, all the autoantibodies, again, C peptide, literally everything. And coming back to that appointment and walking through what my Labs were telling was so insightful. I was surprised that my C peptide was actually in the normal range. It was like 1.5. And when I first was checked at diagnosis, I was like 0.4, I guess.
A
Describe the difference between what I'll call your first diagnosis with that endocrinologist and your, you know, what should we call it?
B
Like you're the rebirth. I don't know.
A
Yeah, I was gonna call it rebirth. Like, you know, when you get married again, like, oh, let's do another wedding.
B
Yes.
A
You were like, let's start this over again.
B
Exactly that.
A
How did that really support you, though?
B
It was so validating to me. And I remember, like wanting to connect with my husband after this appointment to just talk through it. And we were on a walk and I was sobbing. Like I knew, I knew there was more. I knew that there was more than just what was available to me and that the story is so much deeper than just on paper. It felt like this endocrinologist was looking at me truly inside of who I was and what was going on with my body and wanting to respond to that versus your A1C. Looks great. Keep up the good work. And it, it just was. It was so validating.
A
So you have this probably enduring feeling that there's more to this than I understand.
B
Yes.
A
And you can't just let it go.
B
Yeah. Yes.
A
So that is infuriating, Anxiety ridden all, I would imagine. A little bit of all that.
B
Yes.
A
Yeah. What made you, like, what tipped you over? What made you say no? You know what I really need to do? I need to go find a different doctor who's going to be more involved with me. Was there a moment that pushed you or desperation?
B
I think it was desperation. It was a combination of a couple things. I remember bringing an idea to my endocrinologist about amylin or reading about that and wondering like, is that a place for me? Is that something that's really helpful? And I think I understand now that that's not prescribed anymore. Is that correct? I think you probably know that.
A
It does seem like I have an email from somebody who. You know, it's funny, there's a guy that was on the podcast in the first year. I haven't emailed him back yet. This is great that you brought this up. Actually. He wants to come on about that.
B
Oh, interesting.
A
Yeah. Been using it forever and suddenly I cannot find it. It's such a shame. But no, there's somebody very recently. So I don't know. Is Analyn no longer available? I don't know if that's the case.
B
I feel like I read something. Like, it's not as effective as maybe it was thought to be.
A
Contextually. You were looking for anything. I like this, by the way. You and I would dork out together talking about stuff. Like, so you, like, you were just like, maybe this will work.
B
I was looking at everything and anything, trying to find articles or research showing, like, what's the latest technology, what have people tried? Really, just anything. And what I think I was talking about, like, what tips you over the edge? I reached out to my endocrinologist and asked, like, what about Amelin? And his response really punched me in the gut. And I don't blame him for it. This is just where they were was. I don't prescribe that, and I don't even know who I would recommend you to to prescribe that. It, like, crushed me, but because it felt like, oh, my gosh, like, there's all this chatter and all this research happening and I'm not being offered that or I'm not even given the opportunity to discuss it. Like, where, where does that. What's the place for that? Where do I have this conversation with a provider about all the things that I read? And they tell me, yes, it's a good idea. No, this is why this is not a good idea. But have that collaborative relationship, and that. That pushed me over the edge.
A
I also think that it's telling that anything that they don't do, many of them aren't going to want to be involved in. You don't go into an office and say, hey, you know, would you sit here and philosophize with me for a few minutes about what would happen if this. And maybe you and I will try it together. And wouldn't that be interesting? He's like, I don't know what to do and I don't know where to send you. That sentence is, please stop asking me about this. Yeah. Because we're not talking about this anymore.
B
Yep.
A
And then, then you were like, right on. I'm going to go find a different doctor.
B
Yes, exactly. That.
A
I tell people all the time when they want to switch doctors. I would call around, like, I think, and have real conversations on the phone, lay out your expectations and say, is this the kind of office where this is permissible and encouraged? Because if not, you're going to make an appointment. You're going to wait weeks and months. You're going to go in, say your thing, and run the risk of the person looking up at you and going, I Don't do that. And I don't know where to send you for that. Like, it could take you two years to find a good doctor that way. How did you find one on the first try?
B
It was divine intervention. The diabetes educator that I was connecting with and really walking through all this. Like, I was able to be very real with her about what I was thinking, where my distress was, what that conversation with my provider was. And she said, I have a recommendation for an endocrinologist. She also gave me a couple other recommendations, too. She saw him at one point and she said, he saved my life. He was able to diagnose me as Lada. That's what she had said. And she said, he's different, and it might be just what you're looking for. So I, like, I did some research online. There were some terrible reviews, but I just. Something felt like I had to try it, and I was able to get into him quickly, and it just worked. It worked out.
A
Yeah. I think that your vibe then, when you got there was, this is the right person.
B
Yep, definitely.
A
Awesome. Awesome. So what else did you. In that time of picking through and saying, how about Amlin? Like, was there other things that popped up for you or ideas about management that you. What did you think was in that toolbox that you hadn't opened yet?
B
I read a lot about GLP1s, because that was really coming out, too. Like, so much publicity. Like, it was coming out on Bravo, on Real Housewives, and all this other stuff. I'm like, what the heck is this and how does it benefit? And being available to just those with a type 2 diagnosis didn't necessarily make sense to me. The more I read about it, the more I felt like, this actually seems like there could be an offering beyond type 2. So it was like, knowing that that was all drumming up and getting excited, and people were looking at it, seeing that there were some research started by using that on Type one or people with Type one, and I think that was it. There's something else out there for me because these discussions are happening in research and articles and in the diabetes community.
A
Are you using a GLP one now?
B
I am.
A
Which one?
B
I never say this. Right. Thank you. I always want to say, like, bonjour or something. Manjaro. Yes.
A
So how long and what dose?
B
I have been on it since April, and I am at 7.5.
A
Did you have weight to lose for sure?
B
Yep. I had, like, 15 pounds to lose.
A
Is it gone?
B
It's gone, yeah.
A
And you. So you're at 7.5. Because it's a good maintenance dose for you.
B
Yes. And because my. The weight loss happened pretty quickly in a short amount of time, and now my hair is falling out. You know, I'm just going through some of that hair loss that happens, and so I'm not willing to go up. I'm still seeing the great impact of it. I just want to hold until I know I'm not going to lose all my hair.
A
That does happen to some people, right? Their hair thins a little bit. Yeah. Have you tried going backwards to see if you can hold position with even less?
B
I haven't, no. But that would be a good idea.
A
If you don't want to do it as a script. You could go on Amazon, buy vials, inject it into a vial, then draw it all out with an insulin needle to give yourself a measurement, and then mess around with how much of it to give yourself.
B
Oh, that's genius. Yeah.
A
Yeah. Okay, that's for you. Arden right now is using 17 equivalent insulin units of Manjaro. And I think it's a little too much. I think the next time she does it, I'm going to try to tell her to try 15.
B
Okay.
A
It really keeps her blood sugars super stable.
B
That's amazing.
A
Yeah. Do you have insulin resistance? Is that where it's helping you?
B
Well, can I. Can I go into a little bit more? And if I'm telling you too much, please feel free to.
A
No. Go crazy. Yeah, please, please.
B
Within this endocrinology appointment, getting my C peptide level back. Antibodies, which was GAD and the I was positive for the insulin antibody. So knowing that, like, actual insulin was being attacked and I did not have the islet antibody which breaks down that protein in your pancreas. So two out of those three. So just learning all this. And he described it by having a C peptide in the normal range. He said, your beta cell or whatever is producing insulin are like raisins. We need to help those be grapes so that you can utilize the insulin or they can produce insulin and you can utilize it. And so that. That was a good visual for me to understand what we were going to do with GLP1. So getting that C peptide level back and my auto antibodies allowed him to. To say, this is LATA for sure. This is your diagnosis. It's lada, and you can be managed like type one or you can be managed like type two. And he said, if you're going to be managed like type 2, the repertoire of available medications just explodes. Like, there's so many Other opportunities. And he said, I think that you should go on a GLP1 because it will protect those beta cells. You'll have protection of those so they're not destroyed and that they'll work proper, have the cardiovascular benefit, the inflammation and protection against dementia or all those things. And he said, that's the way to go. And that felt amazing. There's something else I can try, and it's not just insulin and it's not just me trying harder. It was like the gift no one would ever be able to give me. It was amazing.
A
That's awesome.
B
Yes.
A
And it's the same doctor. So your progressive doctor ended up helping you in a number of different ways.
B
Yes.
A
Yeah.
B
It just felt like this is someone who is understanding this journey and where people with distress are at. And it felt like people should know this. Like, you shouldn't just get your C peptide checked. Once it's fluid, it changes depending on your blood glucose level. Like, you should be checking that regularly to ensure you have the right diagnosis. Because I'm sure there's folks out there with LADA who are managed like type 1 or diagnosed as type 1 only, and then don't have access to additional medications where if they had these additional labs, they'd be able to have that access.
A
Dr. Hamdi was on the show earlier this year and he talked about that he believes there will be a lot of dual diagnoses in the future. I believe it, yeah. And how valuable that'll be. I mean, that's how Ardent is diagnosed, is that if she didn't have type one, she'd be insulin resistant, like she still would be. And these two things are not mutually exclusive. Like, she has. Yes, she has type 1 diabetes and she's more insulin resistant than you would expect her to be. And so, you know, it makes her eligible for that medication. And what a big deal it is for, you know, for people who would say, oh, well, you just lost weight. That's why you're using less insulin. Do you have more context for them than that?
B
I. I do. I. It's that raisin grape, like, mentality that I feel like makes so much sense. It. You know, as soon as I started, it was like my insulin per carb ratio totally changed. It was, like, from 8 carbs for 1 unit to 9 and then 10 and then 11. Just like this marching change that I needed less insulin to. To cover carbs. And that was, like, immediate proof to me that this was working and that those beta cells were plumping up like grapes and they could function how they were supposed to. And it's for sure like you're, you're gonna lose weight, you're probably gonna eat less, that is less insulin. But I'm not necessarily looking at how much insulin I'm using during the day. I'm looking at how much insulin it takes to manage the carbs.
A
Okay, and do you see less significant spikes around food? This episode was too good to cut anything out of, but too long to make just one episode. So this is part one. Make sure you go find part two right now. It's going to be the next episode in your feed. Today's episode was sponsored by Skin Grip and Skingrip. They understand what life with diabetes is like and they know how infuriating it can be when a device falls off prematurely. And they don't want that to happen to you. Juice Box podcast listeners save 20% off of their first order when you use the link skingrip.com juicebox links are also available in the show notes of your podcast player and@juiceboxpodcast.com Today's episode is also sponsored by the Omnipod 5. And at my link omnipod.com juicebox you can get yourself a free. What'd I just say? A free Omnipod 5 starter kit. Free. Get out of here. Go click on that link omnipod.com juicebox check it out. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found@ omnipod.com juicebox links in the show notes links@juicebox podcast.com Arden has been getting her diabetes supplies from US Med for three years. You can as well usmed.com juicebox or call 888-721-1514. My thanks to USMed for sponsoring this episode and for being longtime sponsors of the Juice Box Podcast. There are links in the show notes and links@juiceboxpodcast.com to us Med and all the sponsors. As the holidays approach, I want to thank all of my good friends for coming back to the Juice Box Podcast over and over again. It means the world to me. It's the greatest gift you could give me. Thank you so very much. Unless of course, you want to share the show with someone else, then that would be an awesome gift too. Or a five star review. I don't know. You don't really owe me a gift. But I mean, if you're looking for something to do, you know, subscribe and follow, tell a friend, etc. Thank you. Merry Christmas. Hey, I'm dropping in to tell you about a small Change being made to the Juice Cruise 2026 schedule. This adjustment was made by Celebrity Cruise Lines, not by me. Anyway, we're still going out on the Celebrity beyond cruise ship, which is awesome. Check out the walkthrough video@juiceboxpodcast.com JuiceCruise the ship is awesome. Still a seven night cruise. It still leaves out of Miami on June 21st. Actually, most of this is the same. We leave Miami June 21, head to CocoCay in the Bahamas, but then we're going to San Juan, Puerto rico instead of St. Thomas after that. Basteria. I think I'm saying that wrong. St. Kitts and Nevis. This place is gorgeous. Google it. I mean, you're probably gonna have to go to my link to get the correct spelling because my pronunciation is so bad, but once you get the St. Kitts and you Google it, you're gonna look and see a photo that says to you, oh, I wanna go there. Come meet other people living with type 1 diabetes, from caregivers to children to adults. Last year we had a hundred people on our cruise and it was fabulous. You can see pictures again at my link juiceboxpodcast.com juicecruise you can see those pictures from last year there. The link also gives you an opportunity to register for the cruise or to contact Suzanne from Cruise Planners. She takes care of all the logistics. I'm just excited that I might see you there. It's a beautiful event for families for singles. A wonderful opportunity to meet people, swap stories, make friendships and learn. Have you tried the Small Sip series? They're curated takeaways from the Juice Box Podcast, voted on by listeners as the most helpful insights for managing their diabetes. These bite sized pieces of wisdom cover essential topics like insulin timing, carb management and balancing highs and lows, making it easier for you to incorporate real life strategies into your daily routine. Dive deep, take a sip and discover what our community finds most valuable on the journey to better diabetes management. For more information on small sips, go to juiceboxpodcast.com, click on the Word series in the menu. Hey, what's up everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at Wrong Way Recording doing his magic to these files. So if you want him to do his magic to you wrongwayrecording.com you got a podcast, you want somebody to edit it, you want Rob.
Date: December 23, 2025
Host: Scott Benner
Guest: Sarah (LADA, nurse, diabetes advocate)
This episode kicks off a two-part deep dive into understanding all available tools for managing diabetes—focusing on the power of knowledge, patient advocacy, and real-life experiences. Host Scott Benner interviews Sarah, a nurse with seven years of lived experience with Latent Autoimmune Diabetes in Adults (LADA), who shares her evolving journey, critical turning points, and strategies for seeking personalized and advanced diabetes care. Together, they tackle common emotions, systemic challenges, and the importance of persistence when navigating the healthcare system with a chronic condition.
Diagnosis Story:
Family History:
Initial Missed Cues and Delayed Progression:
Recognition of Symptoms and Self-Testing:
Emotional Response and Family Dynamics:
Rapid Adoption of Modern Tools:
Changing Insulin Needs:
Desperation & Search for Answers:
Transformative Clinical Experience:
Impact on Patient Agency:
Why and How:
Barriers and Provider Communication:
On Misdiagnosis and Overwhelm:
“It’s really easy not to see it… When you’re beating yourself up—when you have no context for this—and you end up in the hospital, is it really easy not to see it.”
— Scott (14:28–14:37)
On Emotional Impact of Progressive Insulin Dependence:
“That was the most stressful thing for me… every year I’m going to be taking more insulin every single day. Like, that’s terrible. And it just, it felt like that was the journey that I was on.”
— Sarah (32:18–33:01)
On Finding the Right Doctor:
“It was life changing for me. He really started at the beginning and said, I’m not going to write a diagnosis on your chart. We’re going to see what the labs tell us and we’ll go from there.”
— Sarah (34:09–36:26)
“It felt like this endocrinologist was looking at me truly… instead of just ‘your A1C looks great, keep up the good work’… It was so validating.”
— Sarah (36:26–37:14)
On Patient Empowerment and the Right to Explore All Tools:
“I want every single tool to be available to me, not just what the endocrinology team thinks is best for me… I want all the research, I want all the potentials.”
— Sarah (34:41–34:58)
On GLP-1 Therapy:
“It was like immediate proof to me that this was working and that those beta cells were plumping up like grapes…”
— Sarah (48:13–49:06)
On the Importance of Repeat C-Peptide Testing:
“You shouldn’t just get your C-peptide checked once… You should be checking it regularly to ensure you have the right diagnosis.”
— Sarah (46:50–47:26)
This conversation is open, candid, and relatable—mixing supportive humor with constructive detail. Scott is empathetic, a bit scattered (as he jokes), and draws out real-life nuance, while Sarah is analytical, methodical, and reflective. Together, their exchange is highly informative, grounded in both evidence and emotion, and deeply encouraging for listeners seeking self-advocacy in diabetes care.
This episode offers critical lessons in:
If you or a loved one is navigating an adult-onset diabetes diagnosis, this is a must-listen episode for strategies, hope, and validation.
Next: Listen to Part 2 for continued exploration of advanced management strategies and more practical “Bold With Insulin” wisdom!