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Welcome back friends. You are listening to the Juice Box Podcast.
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Hi, my name is Suzanne and I have been a type 1 diabetic for 51 years. I feel like I was diagnosed in the Dark Ages.
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If you or a loved one is newly diagnosed with type 1 diabetes and you're seeking a clear, practical perspective, check out the Bold Beginning series on the Juice Box Podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over 35 years of personal insight into type 1. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate Life with Type 1. You can start your journey informed and empowered with the Juice Box Podcast. The Bold Beginnings series and all of the collections in the Juice Box Podcast are available in your audio app and@juicebox podcast.com in the menu. While you're listening, please remember that nothing you hear on the Juice Box Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan or or becoming bold with insulin. This episode of the Juice Box Podcast is brought to you by my favorite diabetes organization, touched by type 1. Please take a moment to learn more about them@touchedbytype1.org on Facebook and Instagram touchedbytype1.org check out their many programs, their annual conference awareness campaign, their D Box program, Dancing for Diabetes, they have a dance program for local kids, a golf night, and so much more. Touchedbytypeone.org you're looking to help or you want to see people helping people with type 1? You want touchedbytype1.org Today's episode is also sponsored by the Eversense365 the One Year Wear CGM. That's one insertion a year. That's it. And and here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with with the eversense now app. No limits ever since. The podcast is also sponsored today by the Tandem MOBI system, which is powered by Tandem's newest algorithm, Control IQ technology. Tandem MOBI has a predictive algorithm that helps prevent highs and lows and is now available for ages 2 and up. Learn more and get started today@tandem diabetes.com
B
Juicebox hi, my name is Suzanne and I have been a type 1 diabetic for 51 years. I feel like I was diagnosed in the dark ages. I also have several other autoimmune diseases that we will Be discussing today. I'm sure that's part of the reason why I wanted to come on here.
A
Yeah, I'm looking at your list here, Suzanne. You got a. You got a banger here.
B
I have a banger. I do. I do. I have. I was diagnosed with. Well, actually was never diagnosed, technically. I have vitiligo. That was the first thing after diabetes to appear, and that was about 23 years ago. I first noticed it when I was getting married, actually. And then I was diagnosed with hypothyroidism when I was pregnant with my first child. Two kids. And almost a year ago, Mother's Day weekend, I had a fabulous spa trip at the local hospital where I was diagnosed. Diagnosed with Addison's.
A
You had me going. I thought you were gonna have would. We're going to have been diagnosed during a spa trip. And then. But lovely wording. Addison's not fun. From what I understand from people, it is not fun.
B
Yeah, I'll say. That was like a slap in the face. Huge slap in the face. I think it's one thing to have grown up as a diabetic, good or bad. And it's got its pluses and minuses, certainly, as has been discussed on this podcast, I think many times, that's like, one thing. You know, I had that. It was under control. And then the Addison's with the diabetes is not easy. I am still working on that. It is a struggle every day.
A
Suzanne, I have to ask you. Your camera was on when you first came on. You've had diabetes for 51 years. What, were you born with it?
B
No, I was four years old when I was diagnosed.
A
First of all, you don't look like you're 55, so good for you. Yeah, congratulations.
B
55.
A
Yeah.
B
I had Covid on my birthday this year for the first time.
A
My God, are they after you, Suzanne? Whoever they are. What do you think they are?
B
But I have to tell you, that was kind of nice because he basically sat in my daughter's bedroom, who's in Madrid, and I watched Netflix for five days. Not gonna lie.
A
Young people are thinking of having children and becoming real adults. The lady just said, I got Covid on my birthday. What a wonderful gift.
B
Yeah, yeah, yeah, yeah.
A
No one bothered me. And I sat still for a while.
B
Yeah, the dogs hung out with me. It was. It was awesome.
A
Oh, wow. Okay, let's. Let's figure this whole thing out. So I heard you say you have two kids. One of them sounds fancy because they live in Madrid.
B
Well, she doesn't live there. She's actually semester abroad.
A
Oh.
B
Or actually not. Madrid. I said Madrid. She's in Barcelona. My bad. Sorry.
A
Why'd you say Madrid, do you think?
B
Somewhere in Spain. I don't know. She's somewhere in Spain.
A
I was in Spain for. I'm pretty sure. Well, when the fever hits you, what's it even matter?
B
Exactly.
A
How was Covid five years later? Is it like a cold, or did it hit you hard?
B
Yeah, you know, it was really interesting. It was just like a super congested cold. And like, on a whim, I decided to test, and all of a sudden I was, like, positive, and I was like, oh, my God, I finally have it. And it was super, super congested. And I did go on Paxlovid, because I don't think there's any scientific evidence for this, but the last thing I wanted was another autoimmune disease from a virus, because they don't.
A
I don't need more room for them, actually.
B
Yeah, I don't. And I. And you know, I know that I was headed in the Addison's direction, looking back on everything, but I. You know, it's not a coincidence that the previous year, right before my birthday, I got really sick also. And it was not Covid. It was not flu A, it was not flu B, it was not rsv. Rsv. But whatever it was, you know, I had fever, I had chills, and I ended up coughing for, like, two and a half months. And I think that just pushed me over the edge with the Addison's, quite frankly. But I'm not a doctor.
A
Well, listen, first of all, that Paxlovid. What? What? An ad campaign. I forget the wording, but it bounced so nicely. Something Covid packs. Take Paxlovid. I was like, ah, who came up with that? That's awesome. Just really good. I don't know if it works or not. I have no idea.
B
I don't know. It wasn't bad. I mean, you know, Covid wasn't bad. I don't think it was bad to begin with, but. Yeah.
A
And this is the first time you got it. Look at you, dodging. Dodging all the raindrops.
B
I know. And my son has yet to test positive for it, so I don't know.
A
First time I got it, I didn't feel good. I'm going to be honest with you. There's an episode of this podcast. It's about using Gvoke hypopenia, and it's with Jenny. And if you find it and listen to it, I am, like, burning up with A fever while I'm making it. And, like, when we got done recording, Jenny was looking at me, and she goes, are you okay? And I was like, why? And she goes, you don't look okay. And I'm like, no, no, I'm all right. And I got up and walked out the door, and my son looks at me and goes, yo, you're all wet.
B
Oh.
A
And I was just, like. My shirt was soaked. And if you listen back to that, I don't know how I held it together while I was making that, actually. And then I laid in bed and, like, you know, nearly pooped myself and was just, like, feeling terrible for a week. Anyway, I'm glad you got it lighter than that, but.
B
Yeah.
A
Diabetes. Four years old, 51 years ago. 51 years ago is 75.
B
Yeah, yeah.
A
God, no. In time for this bicentennial. How nice. Yeah. Tell me what you remember about growing up with diabetes.
B
I remember we actually had. So my dad was a physician, and there, you know, obviously no blood sugar test kits, but he had a blood sugar test kit that he must have gotten through work. And imagine it like some metal suitcase that had foam, you know, padding all around it. And then it was this machine that looked like. I'm not sure if it's a voltmeter, an amp meter. It had some. You would test the blood sugar. The lancets were medieval, square metal. You know, you'd have to jam it down into a finger. And then this. This meter, which is kind of. The needle, would go back and forth till it figured out where you were. And that was used for emergencies only.
A
Okay.
B
You know, and I remember my mom would have to hold me. Someone, you know, hands would be out, someone would prick me. And then that was the way we tested. And that was not all the time. Again, emergencies only.
A
But you remember that from being 4 or 5 years old?
B
I remember being diagnosed in the hospital. I remember being in the hospital actually, too. There was a traumatic blood draw situation there. I remember that. I remember getting gifts in the hospital, but I do remember that. I remember advancing to the urine tests. I really consider that I'm lucky to be alive today, considering how little we was known back then. Just huge voids of no information.
A
Yeah. What were they doing giving you, like, one shot a day or how were they handling it?
B
I was on two shots a day. I was on regular and mph.
A
Okay. And do you remember eating a certain way? Have you ever heard Jenny talk about, like, the. The schedule her mom fed her on? Like, was any of that going on?
B
Yeah, I Don't really. I mean, I remember there was some publication from the ADA that showed a very. It was like. It was almost like it looked like a calendar format, but, you know, it talked about the food groups and, you know, how you're supposed to have so many car or carbohydrates and protein, and it was basically fill a plate with, you know, half protein or. I don't know what it was, but it was, you know, images, pictures, and it was not detailed. My parents probably didn't cook like that anyway.
A
What kind of physician was your dad?
B
He was a urologist.
A
Oh, not. Not very helpful.
B
Not very helpful. But. But what's interesting is that he suspected that something was going on with me, and he actually brought home test strips from his office to test my urine, and they were faulty and showed up fine. I think not long after that, you know, he was having an accident and he's cleaning up the urine and he's like, this is sticky urine. And that's when went to the hospital,
A
figured out like that.
B
Yeah, yeah.
A
People in your life, as you're getting older, do they know about diabetes or is it easier to hide when it's just two shots a day? How do. How does that work?
B
It was certainly easier to hide when it was two shots a day. Yeah. I mean, people knew, but no one knew. There was no discussion of what to do. I think if, you know, crap hit the fan. I remember on my date with my husband, my first date, I was still doing multiple injections a day, and I remember kind of like trying to hide, giving myself the shot. And it was not long after that I started the pump.
A
How old were you on that date?
B
Oh, like 30 years old.
A
Oh, no kidding. And you were still trying to kind of keep it to yourself?
B
Yeah, yeah. It's not what I wanted to reveal on the first date. Right.
A
Well, no, yeah, I get that, but what was his response? I guess it was a good one because you married him, so.
B
Yeah. Yeah. I mean, he was accepting, you know, that I was a diabetic. He was like, okay. You know, I think he wanted to know more about it, but, yeah, he was fine with it.
A
Well, there's someone out there for you is what I try to tell people all the time.
B
Because there's a lid for every pot. That's what he says.
A
Is that what he says? Which one is he? The lid or the pot? I don't.
B
I don't know.
A
I think it's insulting either way if you. No matter what you are.
B
Exactly. Yeah.
A
Well, okay. Can I Ask, like getting married later in life. Was that to do with the diabetes? Did you find yourself? No, no.
B
That's because I lived in New York City. That was all about meeting a guy.
A
Oh. Who wasn't on coke and acting like a lunatic.
B
Exactly. That was just living. Yeah, exactly.
A
Gotcha.
B
Yeah.
A
Bet you that took a while, huh?
B
It did take a while, but I don't consider. I mean, I think for the city that was probably average.
A
You know, which people are trying to build careers, make money, stuff like that. Hustling around, having a good time, that kind of thing.
B
Right, right, right. Working too much.
A
Finance by any chance?
B
He's in finance? I'm not. I used to teach and now I work very part time. I'm a tutor.
A
What'd you teach in the city?
B
Science. AP Bio, Biology, Chemistry.
A
Wow, that's awesome. What led you into that line of work?
B
You know, I wouldn't be surprised if it's, you know, at some level, due to the diabetes, I actually had wanted to go to medical school and in college that was the goal. Until one day I decided I did not want that lifestyle. So I went ahead and took the MCATs. And I think that was the happiest day of my life when I had that chapter behind and I went ahead and took them so that if I ever wanted to go back, the door was still open. But I decided that's not what I wanted to do. And I liked science, so I went into teaching.
A
I remember taking my wife to the MCATs. Oh, man, she was like. She was young and nervous and. Oh yeah, it was like a whole day. It felt like all day.
B
Horrible, horrible experience. Which is why it was the happiest day of my life.
A
When it was over, I was like, not wrong, right? Like I might have dropped her off and picked her up like six, eight hours later or something like that.
B
Oh, yeah, yeah, yeah. Very grueling.
A
Yeah. Geez.
B
Yeah.
A
Oh, goodness.
B
So I think I made the right choice.
A
Has teaching been fulfilling? Let's talk about the Tandem Moby insulin pump from today's sponsor, Tandem Diabetes Care. Their newest algorithm, Control IQ technology and the new Tandem Moby pump offer you unique opportunities to have better control. It's the only system with autobolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options. TandemMobi gives you more discretion, freedom, and options for how to manage your diabetes. This is their best algorithm ever and they'd like you to check it out. @tandomdiabetes.com Juicebox when you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's going to help you learn about Tandem's tiny pump that's big on control. Tandem diabetes.com juicebox the Tandem Mobi system is available for people ages 2 and up who want an automated delivery system to help them sleep better, wake up in range and address high blood sugars with Autobolus. This episode of the Juicebox podcast is sponsored by Eversense365 and just as the name says, it lasts for a full year. Imagine for a second a CGM with just one sensor placement and one warm up period every year. Imagine a sensor that has exceptional accuracy over that year and is actually the most accurate CGM in the low range that you can get. What if I told you that this sensor had no risk of falling off or being knocked off? That may seem too good to be true, but I'm not even done telling you about it yet. The Eversense 365 has essentially no compression lows. It features incredibly gentle adhesive for its transmitter. You can take the transmitter off when you don't want to wear your CGM and put it right back on without having to waste the sensor or or go through another warmup period. The App works with iOS and Android, even Apple Watch. You can manage your diabetes instead of your CGM with the Eversense365. Learn more and get started today at eversensecgm.com Juicebox 1 Year 1 CGM teaching
B
has been very fulfilling and you know, I quit when I had the kids. I was commuting into the city teaching. We had moved out to the suburbs at that point in time and tutoring's been great for me because now I get to choose how many students I want. I still work, you know, one on one with these kids and I really enjoy it. Quite frankly it keeps me not current too with the science.
A
Oh yeah. So you're not that person who's like I didn't know we did math like that.
B
Right?
A
Yeah, you didn't fall that far behind. You know I just realized my sister in law, she tutors over zoom with that's what I do students in China.
B
I don't teach students in China.
A
Yeah, yeah, it's a little hard because the time is weird. She's up really early doing it but she's like, it's really kind of really interesting. Like she's enjoying it. So anyway Yeah, I have a student
B
in California this year, and. Yeah, it's great. It keeps me busy, you know. Yeah, I like it.
A
Very nice. Awesome. Okay. So you've got this diabetes thing. You're growing up with it. It sounds like you were fairly well, like, regulated. Meaning, like, you're not upset by it or thrown by it too much. It didn't. It wasn't a big.
B
It's all I knew.
A
Yeah. Not a big consternation in your life. Really not.
B
Yeah, it's all I knew. I think, you know, during the teenage years when I rebelled, I did rebel against my diabetes, you know, teenage years, and college was definitely not the best control. Had to get buckled down later on. And when I was living in the city and had good doctors who could guide me and ways to get that just to change, I guess, my attitude and how I was handling my diabetes, I think that's pretty typical.
A
Yeah. Can I understand that better, though?
B
Yeah.
A
So there's a moment when you're out of your. You're a teenager, and there's that I'm gonna fight against the world feeling. And then you choose. Well, not choose consciously, but you pick diabetes to fight against. What does that mean? What's your management style? Right. Then, like, what is it you're not doing?
B
Here's what it was. I actually went to boarding school, and that was my choice. And when I was in boarding school, I think this sounds kind of silly, but you could eat anything you wanted, you know, I think I had a Pop Tart for the first time in boarding school. Like, I would never have had a
A
Pop Tart growing up because your parents wouldn't have bought it.
B
We wouldn't have bought it. Not at all. I never even had boxed Mac and cheese as a kid. Growing up, my mom would make Mac and cheese, but not, you know, nothing crazy fancy, and it was just simple. And in boarding school, I could have boxed Mac and cheese. I could have Pop Tarts. So I think. I don't know if it was so much of a rebellion versus. Well, it definitely was a rebellion, but also an exploration, I would say, as a result of the diet, my diabetes, I think, suffered.
A
How was it tracked then at that time?
B
So I feel I. I mean, I know in college There were definitely a 1Cs, but I don't know how it had been tracked with a 1Cs. Right.
A
I mean, you would think blood draws, like, maybe twice a year, something like that.
B
Yeah. Yeah.
A
And then your dad had to have been. Was your dad, like, involved still?
B
You know, I don't Know how involved he was at that point in time? Actually, yeah. You know, my mom was the one who would take me to the doctor's appointments, and I went to a really good university, like, medical center for my diabetes growing up. So I had great care. I went to diabetes camp, which I think was amazing. Probably one of the best things my parents did. But I know that when I was in college, I had to go to, like, a different hospital system because I was like 13 hours away from home. Didn't love that endocrinologist. That probably had something to do with it, too. I feel like, you know, you have to. I think at that age, it is important to, like, your doctor.
A
Yeah.
B
Because they have such an important impact on you.
A
Hey, you just said something. I have to make a note to myself. I'm sorry, hold on one second. I just got done giving away a bunch of spots at Camp Sweeney, and I have an offer to make all the people who weren't chosen. It's like really, like a really nice offer from Camp Sweeney, and I'm supposed to send an email out. I just realized I didn't do that yesterday, so I just made a note for myself. I'm sorry. Thank you.
B
Okay. Don't worry. Don't worry.
A
I appreciate you reminding me. Wouldn't have got that done today. So camp was valuable, but you're pushing back. Are you regular and MPH in college or are you. Have you moved up to something else by then?
B
I might have been on 70, 30 or something else.
A
Okay. But still just. You're still just taking a few shots a day?
B
Oh, yeah.
A
What did it look like? You just weren't doing it?
B
Oh, no, I did my shots. I did my shots. I wasn't testing all the time, you know? Yeah, yeah.
A
So whether or not those shots were enough for the food you were eating, that was not a thing you were concerned with?
B
Probably not.
A
Okay, got it.
B
Yeah. Or at least not all the time. You know, I don't remember having, you know, crazy lows or. And I never been. I've never been in Knock on Wood, as I'm doing right now. I've never been in dka. So somehow I survived all this. Like, I honestly don't know how.
A
Do you have long term complications from diabetes?
B
Yes, I would say some. I have been treated for diabetic retinopathy in my eyes. My eye doctor was holding off for a very long time on treating them, and finally he's like, well, let's just do it and see how you respond. And then I responded beautifully. He Said, and he's like, well, let's do the other eye. My eyes have been treated. I see him now once a year. I have had some trigger fingers and some in carpal tunnel surgeries for both of those. And knock on wood, I think that is all of my complications, except for all these autoimmune diseases, which I don't consider a complication.
A
No, no, no. I wouldn't either. What's the treatment for the eyes? What they do?
B
They just did the laser of the laser.
A
How was it?
B
I don't even remember, Scott. That was like. I'm trying to remember when that would have been. That would have been pre 2000, it was. Oh, actually, no. One eye was after. It was totally fine. You know, it's just a weird feeling having your eyes lasered, I think.
A
I don't know, but I imagine.
B
Yeah.
A
When people talk about the needles and they're like, you don't feel it? I'm like, I don't understand what you're saying.
B
Yeah, I know. They numb it. And, yeah. I've also had. And this is not because of my diabetes, an iridotomy. And that was because of the shape of my eyes. They thought the pressure was just creeping up a little bit, so I had that more recently. And again, that was not bad at all.
A
Okay, so what's the next thing that comes. So you have diabetes, you're in college. Do you have something else by then, or when does this.
B
No, the vitiligo is what first appeared.
A
The vitiligo. Is it very noticeable?
B
So in the summertime, it is, but I don't think it's horrible. You know, it's. You see it definitely on my hands, it's harder to protect my hands. If you're washing your hands, the sunscreen comes off. So my fingers are definitely lighter. I know I have it on my face a little bit, but if you were to see me, you wouldn't notice it at all. No one else, but I know exactly where it is. And then it's also in other parts, like, weird parts of my body.
A
I liked earlier when you said, it's like you said it's not diagnosed. I was like, that's.
B
No one ever told. Yeah. Like, I don't know when I figured out I had that.
A
I mean, I'm assuming you looked and went, I think there's patches of uneven color on my skin. Right? Is that.
B
Yeah, yeah, yeah, yeah. And it was no big deal. Like. Like, it was just like, oh, yeah, you have vitiligo. Like, whenever I Eventually found out about it. It was no big deal.
A
Okay.
B
And I don't consider it a big deal like this. The vitiligo is the least of my concerns.
A
No, I wouldn't. I mean, putting myself in your shoes, I wouldn't imagine. But at the same time, it's interesting to think, like, you have something. You're like, I don't even need somebody to tell me this officially. I. I get it. And there's nothing I can do about it. So what happens next? Is the. Is it the Hashimoto's with the pregnancy?
B
Exactly. Exactly. Yeah. Yeah.
A
And that's 25, 21.
B
That was 21 years ago.
A
21 years ago. And are you taking medication for it?
B
Yeah, I take Synthroid in my th. Tsh is below 2. You'll be happy to hear.
A
I will be happy. Thank you.
B
Yes, you're welcome. I just checked.
A
Somebody told me the other day that they had a TSH of 7 and the doctor was like, well, it's not over 10, you're fine. And I'm like, wait, what? No.
B
Yeah, that's not good.
A
Yeah.
B
No. And you might find this funny. I don't even consider the hypothyroidism to be a huge deal.
A
Well, if it's not impact. If you're not. You're not tired.
B
I'm not impacted by it. Right. Yeah, yeah, yeah, yeah. Take my pill for that. And that gets monitored every three to four months. So I feel like I'm. That's controlled. Usually every winter, my nails just go. They're just. They just. They're horrible. They just get so bad. Brittle, brittle, peeling, cracking. Ironically, this is the first year it hasn't happened, but yeah, okay.
A
You know, I think that's an interesting one because if, if your energy stays up, I think that's the worst impact from. From Hashimoto's. I mean, there's a. You get gadigoiter or something.
B
But I'm saying, like, here's my thing about that, Scott. Like, I'm a busy person. I'm a mom of two kids. I've got two dogs. You know, my husband commutes to the city all the time. Like, life is exhausting to begin with.
A
You think you might not notice? You might.
B
Yes. I mean, like, so, you know, unless you're so exhausted that you're, you know, bedridden, I don't know if I would notice that.
A
I have to tell you that over the last couple of years of my life, having lost weight and using the GLPs and everything, I Feel a. A different level of good than I ever have in my life. Like now when I'm tired, I think, oh, something's wrong with me.
B
Yeah.
A
Yeah. Because I'm just generally, like, I feel the way I feel right now, which is to say energetic and focused and, like, all that stuff. But I was just saying to Kelly this morning, because we both lost weight, and I said, she came in the. I was in the shower, actually. It would help people to know that when I say I don't plan for the podcast that. Well, I was in the shower at 9:58 this morning, and this start. This started at 10. So. So I'm in the shower, and Kelly's getting dressed. She's got to go into the office. And she looked nice. She came in. I said, hey, you look great. And she goes, oh, I have to go to the office. And I was like, well, at least your butt looks nice. That'll be nice for people who see you. And we were chatting like that. And then she. I said, you look terrific. Then she grabs like, a spot on her, and she's like, well, this. And I said, kelly, I'm like, go to the grocery store next time. I said, Find 5 pound bag of flour. Pick it up. Figure out how much weight you've lost. Divide it by five. That's how many bags of flour you got rid of. I was like. And then, like, find some perspective, because you look terrific, you know?
B
Yeah, yeah, yeah.
A
But on top of all that, I feel different.
B
That's great.
A
Yeah. I mean, I've lost weight, but, like, it's. I don't know that the weight is the greatest thing, like, visually is not my biggest deal. It's. It's just how I feel.
B
Yeah. But I have to say, being. Well, I was gonna say being on steroids now and being diagnosed with the Addison's, I know there are people who are really struggling with Addison's. They can't get out of bed or, you know, they're so fatigued. I have to say that I feel great on the steroids now. And I don't think, even when I just said a few minutes ago, like, you know, what's exhausted, you know, when you have hypothyroidism. How do you know? I do know in retrospect that I probably was a little more exhausted before that diagnosis and just didn't realize it because I just attribute it to life.
A
Yeah. Well, I think when you live with autoimmune issues, if you're tired, you should maybe have your thyroid check.
B
Yeah.
A
You know, because it is. I mean, for a lot of people, it is correctable with a pill once a day. Do you ever find yourself not taking the pill, or do you just take it. You take it religiously.
B
Take it religiously.
A
Okay.
B
Yeah, yeah, yeah. And now with the Addison's, I bought this fancy pillbox for, you know, dividing up my pills now four times a day. I mean, it's crazy, but there's no.
A
You're making getting older sound so sexy. I got coveted and got to watch Netflix, and I have a fancy pillbox, guys.
B
Fancy pill box. Yeah, I love it.
A
I'm really living, is what I'm saying.
B
Sad but true.
A
How does the Addison's, like, rear its head? Like, what is the first thing you notice?
B
So that's a good story. Well, let me back. Actually, let me backtrack this. So I was diagnosed the weekend of Mother's Day, right. The week before. Like a full week plus before. I just seen my endocrinologist, and everything was great except for my sodium level. You know, sodium is supposed to be in a very narrow range. I'm trying to think, like, the lowest. It's. I don't. Like, 135 might be the lowest. It's supposed to be highest of maybe 145 or something like that, like, tiny range. And I had been flirting with low sodium for a while. I had also been on a medication called spironolactone. I don't know if you've ever heard of this one.
A
Yeah, sure. My wife used it for a while for period pain when she was younger.
B
Okay.
A
Yeah.
B
People use it for hair loss. People go on for acne. Yeah. I mean, you go on it for a million one reasons. I actually went on it for hair loss, and I had been on it for a while. It's also a diuretic. So, you know, we. The first question was, you know, after my sodium salt.
A
Okay.
B
Yeah, yeah, yeah, yeah. So make you go to the bathroom. And I wasn't even on a high dose, but, you know, my. My endo was like, maybe you need to go talk to your GP about this. And so I knew he was going to say, go off the spironolactone. And I was ready to go off it. I was like, fine. So I quit that a few months before and tapered myself off. Went to see her that Wednesday, a good week plus before, and my sodium's still low, but everything else is fine. Now, in retrospect, there are a lot of other things that you don't think of telling the Doctor.
A
Okay.
B
Like, for example. Yeah. So workout three days a week. When I would do a burpee. Like, if I did a proper burpee, when you're down on the ground and you do the burpee thing and you stand up, I would feel lightheaded. So I had stopped doing them where I would stand up after you stick your legs out. You know, trying to explain that. Sorry, it's hard to do that on conversation. But if you know what a burpee is, you know, so I would just stay down and do them. I also had a lot of leg and foot cramping, particularly in the summer. That had been for a couple of years. So there were these things that were probably signs, but they're so vague. How do you know? Right. So anyway, so then. So there's that Wednesday, the following Wednesday, literally a week later. Oh, wait, sorry. One more thing. One more detail. I have a frozen shoulder. And that was because I was playing paddle tennis and I went and got, like, trying to do an overhead shot, and something popped, snapped, made a noise in my shoulder. And I remember thinking, oh, great. Wonder what that was. But no pain, nothing. And then, sure enough, sometime later, my shoulder starts to freeze up.
A
Yeah.
B
So, you know, look, I'm a woman. Menopausal. Yes. I have diabetes. I also have hypothyroidism. That. I don't even consider that necessarily a complication of diabetes that was probably just waiting to happen. And I'd also had previously another frozen shoulder from moving, like, moving all the boxes around, unpacking all that.
A
I think frozen shoulder is a. I mean, that really could be a complication of the diabetes because you've got trigger finger, too, right?
B
Yeah, yeah, yeah, it totally could be. You know, but I think no matter what, like, I was probably destined to get that with the hypothyroidism, menopause. I mean, like, all of those reasons.
A
Actually, I like your attitude around it a lot.
B
Thank you. Denial. I don't know. Maybe.
A
I don't know if it's denial or if it's just like, yeah, it happened and. Yeah, right.
B
Yeah. And I knew. The funny thing was, I knew as soon as I had the first one and I went to the doctor, like, months after it first started, I knew I'd get the second one. It was just a matter of time. And sure enough, that one stroke on the paddle court, so. So I had been dealing with this frozen shoulder. And starting that Wednesday before I went to the doctor following weekend, I hadn't slept well. And I was blaming my Frozen shoulder. Because why not? You know, it's uncomfortable at night sometimes. So I wasn't feeling great. Monday, I go work out and in retrospect, the person I work out with and the two people I work out with, they were like, yeah, you didn't look so great. Go have lunch with my mother in law. And she told me I didn't look so great. I was like, okay, Tuesday, have dinner or lunch with a friend. Not really hungry, kind of a loss of an appetite. I decide that night just to have a peanut butter sandwich for dinner. Then Wednesday I wake up and literally my husband is walking out of the house to go to California until I guess, Friday night.
A
Okay.
B
And I cross paths with him to walk into our powder room to vomit. And he turns around and he looks at me, he's like, do I need to stay? And I was like, nope. I got this because I don't know how many diabetics are like this, but when I vomit, there's a very good chance I'm going to get ketones. So I start to play what I call the ketone game where I take zofran and I try to hydrate with electrolytes and try to keep some carbohydrates in me of some sort to prevent the ketones and to stay out of the hospital. So that's, that's like the normal protocol.
A
Yeah.
B
So I just tell him, nope, I got this. I was fine for the rest of the day. I even picked up my son for something, drove him, went into takeout because I wasn't feeling good, well enough to make dinner and didn't really have an appetite to eat that. And I would say by around 8 o', clock, I'm like, yeah, I'm not really feeling well at all. And I called my dog sitter, who also happens to be a type 1 diabetic.
A
Why are you calling your dog sitter?
B
Well, husband's away, I've got my son here, you know, okay. He's going to have school. And I it call, called her and I was like, are you available if I have to throw in the towel and go to the hospital? Like, I just needed to know, like, is she available? Yeah, that's it. She's like, yep, I'll any, anything you need. And sure enough, by the time my son goes to bed, I get sick again. So I like, I managed like 12 hours plus not getting sick. And I feel like the always hits the van at night, right?
A
Yeah.
B
And I'm getting ready for bed and I throw up again and I'M like, you know what? Like, this isn't right. Like there's something going on and I had no ketones.
A
Right. So do you start thinking at that point, maybe this isn't what I think it is?
B
I didn't know what to think, Scott. I did not feel well.
A
Okay. Are you starting to get dazed and. Not really.
B
I don't know. But like, I just. I didn't feel well. And I called. I called Jackie up, my dog sitter, and she immediately came over. And then I'm, you know, ready to take myself to the er, and she's like, no, you're not. So she drives me. And as a diabetic, you get in pretty quickly. Usually it was. I think it was also a slow night, but this is like the local hospital and they do blood work and they tell me that my sodium is 116 and that's really low. Like, that's severely low. Like, I could have confusion, seizures, coma, like bad stuff. And they immediately send me off for a CAT scan to make sure my brain hasn't swollen. And lucky enough, it had not. And I think, oh, go ahead.
A
No, that's just horrifying, that's all. Also, your husband's about to do a round tripper to California is what I just heard, too.
B
But you did not hear that, by the way.
A
Oh, he didn't come back.
B
Well, we'll get to that.
A
Okay.
B
I didn't know how bad it was, Scott.
A
Oh, okay. Okay.
B
You know, so they tell me my sodium is on Costine. I don't know what that really means, but I'm like, okay, I have low sodium. They do the brain scan, and then next thing I know, they're admitting me. And I didn't know they admitted me to the mini icu. So I have no idea.
A
Okay.
B
And I didn't know until, like, I was practically being released the day I was being released that I was in the mini icu.
A
What's mini ICU Means? Are you.
B
I was like, that's what they called it, but it's like the. The wing opposite the icu, so that if they have to admit you to the ice, it's a step up or step down from the icu. Basically, yeah. And they wanted me there, I guess, because if they couldn't raise my sodium correctly, properly, or had any issues with it, I'd have to be in the icu.
A
Geez.
B
Yeah. So they had no idea why my sodium is low either at this point in time. They just know that it's low. I think they get Nephrology involved, because, yes, it could be my kidneys. I didn't know all of that at the time. And I wasn't confused. Like, I was very coherent. It was. It's kind of weird.
A
How long are you in the hospital for?
B
I was in the hospital for four days. I will say they handled the Addison's very well. Oh, and another symptom that I didn't realize. My blood sugars were really low beforehand. And I remember commenting on that. I was like, gosh, I can't get them up. I wonder what's going on? And it was kind of weird that that had happened. And that continued in the hospital for a few days, too. But they diagnosed me with Addison's. My husband did stay in California. I didn't say come home. I had girlfriends and family who were here. I think had it been known that I was in the mini ICU and perhaps how serious it was, obviously he would have come home.
A
Like, we've been married a long time, but not that long.
B
Yeah, yeah, yeah, yeah, yeah, yeah. So I'm glad I listened to myself. Right. Like, it definitely was the right thing. Because I'd hate to think about what would have happened if I hadn't gone in when I did. I think my body was so used to having to work at a lower sodium level to begin with that. A sodium level of 116. I was not having any complications from that, which I feel very fortunate. But they didn't do such a great job with releasing me with the steroids and the meds. And within a few hours of being released from the hospital, I was not right. Oh, and there were. I was confused. I was hearing noises, and my legs felt like there were weights in them, and they were pulling. The weights were pulling me down to the ground. And I knew something was wrong with me. Again, like, I knew this is not right, and I knew I was confused. And the worst thing you can Google or do is Google, right? Like, you shouldn't Google when maybe you should. I don't know. I did. And I think part of it is like, my. Because, you know, I can Google something and understand a lot of the science behind it to a certain extent. And I was convinced that they had not raised my sodium correctly and they had caused nerve damage to me.
A
Like, you and Google figured this out together?
B
Yeah, we did. Yeah, yeah, yeah, yeah.
A
Did you Google and see, I think about AI so much now, not Google. Like, I would have been like, I think I'm confused. And I think I would have been like, how do you know? You know what I mean? And then you would have got caught in an existential conversation.
B
Well, part of it. I know part of it was that they said they would do another CT scan on my brain and make sure everything was okay. And they did it. And then I started going down that rabbit hole. I mean, I was not right, Scott.
A
No, I hear you.
B
I should have been this confused when I went into the hospital, not when I came out. And, you know, my husband knew something was not right. And I was like, we have to go back to the hospital. And for some reason, we called my end up. I actually, you know, I had her cell phone number because I done a lot of studies with her practice in the city, and I had her cell phone number. And she's like, yeah, you need to go back to the er. And it was like, do we go to New York City or do we go to another university hospital that's close by? And we decided she thought New York would be too much of a mess in the er, and we went to the other hospital. I thought I was having a stroke in the er. Scott. My husband's like, you were not having a stroke. Oh, yeah. I mean, I was not myself. And he's like, she's not right. I know she's not right. I was like another person. Like a crazy person.
A
Yeah.
B
I mean, I can look back and
A
laugh at this now, but it's scary at the time.
B
At the time, it was scary. Like, I was convinced I was having a stroke.
A
He's too old to date. You know what I mean? He's got a. There's. He's got concerns as well.
B
Stuck with me.
A
Yeah. He's like, I got. This lady's got to hang in there. I don't want to do this again.
B
Exactly. He's got kids. That messes it all up.
A
Yeah, the kids seem to like her. I don't. This is bad. We gotta figure this out. God, I don't want to do the laundry.
B
Right?
A
Suzanne, wake up. But you felt like you were having a stroke.
B
I did. I was convinced I'm having a stroke.
A
Okay.
B
I mean, it probably didn't help that I saw the signs for stroke, like, right across from me. But, I mean, like, I. Like, I felt like my mouth was getting swollen. I was having trouble swallowing, like, all this crazy stuff. Right. So they actually ended up doing a CT scan of me. My brain, I guess. I don't know, in the er. And actually, that was one of the most psychedelic experiences I've ever had. And that is the only way I can explain was not, like, my first CT scan a few days prior. It was the psychedelic light show. I don't know what was going on. They ended up admitting me. And this is also a little weird. I had. They had to transfer me to another one of their hospitals within the system, just like, on the other side of town. And my only experience with that other hospital was that I knew someone's dad who was a psychiatrist, and that was his hospital. That's where he saw his patients. Okay. So that. That's important because when once they got me transferred to the other hospital, and this is, like, late at night, by the way, I wake up at this other hospital. You know, they set me up. There's a woman who I'm sharing the room with, who is. I can't see her. The screen is between us. But she's talking about fentanyl patches and all this stuff. And I'm like, okay, this is really interesting. And I hear screaming noises from the hallway from patients. Okay. And for a minute there, Scott, I literally thought, mother's Day, by the way,
A
put you in a psych ward.
B
Yes. And I was like, I'm not crazy. Like, I was like, I'm not crazy,
A
but how would you know if you were?
B
I know.
A
Yeah. This is the worst season of Sex in the City I've ever heard.
B
I thought I'd woken up in a psych ward. And it became very clear soon enough that obviously I had not. The woman next to me had. She had a tumor in her pancreas. I mean, so, like, they were going to have to do, you know, Whipple and all this stuff on her. The poor woman, she was super nice. I talked with her. The screams from the hall were the patients with dementia.
A
You know, you're like, I could give you some insulin advice, but I am tripping balls right now, so I don't think I should tell you anything.
B
I was fine. I was fine.
A
By then. You were. Okay. Okay.
B
Yeah. So they actually said there were two things they said. They said one thing, that they thought I was having a panic attack.
A
Okay.
B
Maybe. I don't know. Probably could have.
A
Couldn't have been to me a little bit, but go ahead.
B
Right, right. So, you know, I've had one panic attack before. It was not like that at all. That was during COVID when I had to fly for the first time to go visit my sick parents. So that was something totally different. And then when I'd been in the er, you know, they were trying to figure out if I was in dka. And I remember flipping out in the ER because, like, I was like, I've never been in dka. What are you talking about? You know, like, so I don't know. There was just a lot of confusion. I think I was in my endo. Now says she thinks I was having a crisis. She had connected, unbeknownst to me, behind the scenes, connected with other doctors at this hospital. And this lovely doctor came to visit me. She was pregnant with her second child on Mother's Day. I, you know, bless her for coming in that day. And she was like, you're fine. She's like, you have to eat. I think I had some ketones, but nothing crazy. She's like, you just need to eat. And she's like, you need a week, and you just need to deal with this new diagnosis. She's like, you're going to be fine. We finally made it home for dinner. That was the beginning of Addison's, except for the fact that came home. So that's Sunday night. On Tuesday, I had a Zoom call with my endo, and I asked her if I could be readmitted. I was like, can you. Can we just start this all over again, please? Because at this point in time, I had two different hospitals telling me what steroids to take when, like, it was such a mess. Scott.
A
Yeah.
B
And she was so amazing. Like, you know, I met with her at 8:30 in the morning on Zoom. She told me what to take, and then she hooked me up a few months later, took with an adrenal specialist
A
in her practice, I was going to say, who manages the. The Addison.
B
Yeah.
A
So I see two windows now, even endo for diabetes.
B
I don't know if I need to. But you know what's crazy is that I asked my endo. I was like, so how many other Addison's patients do you have? And she looked at me and she's like, just you.
A
It's just you, me and Google, baby. We're going to get it, don't worry.
B
Right? And then, I don't know, adrenal specialist. I'm like. I was like, so how many other type ones do you have? And she's like, just you. Maybe one. But I mean, maybe one, if you don't know, is just you.
A
Yeah, right.
B
And, you know, look, they're both in a med school university setting, so they don't see patients every day. Right? They see patients two to three times a week. Then they're teaching, they're doing whatever they do behind the scenes with research, so they don't have a full patient load, but between the two of them, it's almost a full facial load.
A
Right, right, right.
B
And I was just like, I feel like the balloon popped when I heard that. I was like, oh.
A
Oh, it's just us, huh? Have you found. There's some people in the Facebook group that have Addison's. Have kind of found each other.
B
Yes. And there's actually a type one Addison's Facebook group.
A
Is there? Okay, good.
B
Yeah. Facebook has been amazing, I have to say. You know, between.
A
Somebody doesn't yell at you about your politics. It's awesome.
B
No, but like. But it's like you have to take everything with a grain of salt.
A
Sure. And then filter through. It's a great starting point. You know what I mean? Like, people can.
B
Great starting point.
A
Yeah.
B
And I think early on, that was so important for me, at least with the Addison's, and there are so many adrenal insufficiency groups, and people have adrenal insufficiency for different reasons, different kinds of. So that's really. Take everything with a grain of salt. That side of my health.
A
How much more are you having to bolus for the steroids?
B
Oh, it kills me. Yeah. So that I'm learning to get over. So I used to be on maybe 28 units a day, you know, maybe a day of a lot of eating or not a lot of exercising, maybe 32. But now it's around 40 something. And this is what I also hate. I feel like I have a belly now. Like, I was so proud of myself that with the diabetes, I was, like, making it through menopause and doing so well. And now I put on weight with the steroids, like, about £10. But I'm a short person, and so £10 is a lot.
A
Well, I knew you were short because they put you in the mini icu. It's a joke I made earlier, but you didn't hear it. I just wanted to do it one more time, that's all. I love that. By the way, before we started, you said you were nervous. You don't even need me. I could say, hey, everyone, this is Suzanne. She's going to tell you about her life. I'll be back in an hour.
B
Sorry, I'm talking too much.
A
No, you're doing great. I just, like, you set me up for me having to prompt you, and then you were just. You don't need that. So thank you. You're not nervous now, right? Okay, good, good, good. Now, so what are you going to do about the weight?
B
Is it I want to buy a treadmill.
A
First of all, I'm going to buy some stuff.
B
Joke.
A
Are you going to rub the treadmill on your belly? How's that going to work exactly? You want what?
B
I don't know. But here's the thing. Like, you know, I said I feel so much better on the steroids, and I do. And I feel so fortunate that I can still work out three with my trainer. I'm still back doing Pilates one day a week, so I'm really trying to work out. I make sure I do that in the morning after I take my biggest steroid dose. But with the insulin resistancy, if I could just hop on that treadmill at night for even 15, 20 minutes, go for a walk, do it after lunch, I think it would make such a difference. At least it would make me feel good, if nothing else, right?
A
No. Yeah. But nothing wrong with getting moving. That'd be awesome.
B
Nothing wrong with getting moving. And you know, I, I often think about GLP1s because I feel like I am such a prime candidate for that. Now.
A
I wonder if it would lower your insulin needs, if the Addison's would combat that the other way.
B
No, I think, I think it would combat the Addison's because that's combating, you know, the, the, the steroids and the insulin are fighting, right? They're antagonistic, so they're fighting. And I think the GLP one. That's what I think. But. And there are Addison's type ones on GLP1s. I think it would, you know, reduce the. It would let the insulin work better. I really think it would.
A
Well, why are you not trying it then, if that's what you want?
B
That's a great question. So.
A
Because let me say this, Suzanne, you have a reasonably comfortable life. You, there's things you want to do, you do the things you want to do. You're not being stopped by insurance or money or anything like that is what I'm saying. So, like, why. At least that's my, my take from this.
B
So, like, yeah, insurance will not pay for it and it is expensive.
A
Yeah.
B
But, hey, that's why I tutor. Right? So what's stopping me is that it is another drug you're dependent upon. That's just one more.
A
Why does that matter? 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. This episode was sponsored by touched by type 1 I want you to go find them on Facebook, Instagram and give them a follow. And then head to touchedbytype1.org where you're going to learn all about their programs and resources for people with type 1 diabetes. Are you tired of getting a rash from your CGM adhesive? Give the Eversense 365 a try. Eversensecgm.com Juicebox beautiful silicone that they use. It changes every day, keeps it fresh. Not only that, you only have to change the sensor once a year. So I mean, that's better. Head now to tandom diabetes.com juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're going to find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system. Thank you so much for listening. I'll be back very soon with another episode of the Juicebox Podcast. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple Podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple Podcasts and set it up so that it downloads all new episodes, I'll be your best friend. And if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? If you're looking for community around type 1 diabetes, check out the Juice Box Podcast. Private Facebook group Juice box podcast type 1 diabetes but everybody is welcome. Type 1, type 2 gestational loved ones. It doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort or community, check out juice box podcast, type 1 diabetes on Facebook. If you have a podcast and you need a fantastic editor, you want Rob from Wrong way Recording Listen. Truth be told, I'm like 20% smarter. When Rob edits me, he takes out all the, like, gaps of time and when I go and stuff like that and it just, I don't know, man. Like, I listen back and I'm like, why do I sound smarter? And then I remember because I did one smart thing. I hired rob@worldwayrecording.com.
Date: May 5, 2026
Host: Scott Benner
Guest: Suzanne
In this candid and deeply personal episode, host Scott Benner welcomes Suzanne, a longtime type 1 diabetic who shares her remarkable journey of living with diabetes for over 51 years—along with a host of additional autoimmune challenges. Suzanne and Scott discuss the evolution of diabetes care, navigating multiple autoimmune diagnoses, and maintaining resilience (and humor) through decades of medical challenges. Suzanne’s story is filled with wisdom for both newly diagnosed and veteran patients, offering practical insights, relatable experiences, and hopeful perspective.
Type 1 Diabetes Diagnosis
Additional Autoimmune Conditions
Childhood with Diabetes
Adolescence, College, and Rebellion
Adult Life & Professional Choices
Long-Term Complications
Thyroid Disease
Addison’s Disease Onset and Crisis
Mindsets Matter
Humor & Relatability
Self-Advocacy & Informed Decision-Making
On the limitations of early diabetes tech:
On patient confidence:
On Addison’s diagnosis and crisis:
On living with complexity:
Suzanne’s tone is forthright, witty, and unflinchingly honest, often meeting Scott’s humor and curiosity with her own. Both speaker’s relaxed, conversational style makes this episode deeply relatable, especially for anyone grappling with chronic conditions or the emotional ups and downs of self-management.
This episode is an engaging resource for anyone living with type 1 diabetes or accompanying autoimmune conditions—whether newly diagnosed or with decades of experience. Suzanne delivers practical advice, vivid personal stories, and reassurance that even in the face of multiplying diagnoses, there is a way forward. Her experience with medical “firsts” (Addisonian crisis, hospital navigation, treatment confusion) and self-advocacy strategies highlight the importance of adaptive attitude and self-care. Strongly recommended listening—not just for medical insights, but for Suzanne’s humor, honesty, and perspective on living well with chronic illness.
Be sure to catch Part 2 for the continuation of Suzanne’s story and further practical insights!