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A
Hello friends, and welcome back to another episode of the Juice Box Podcast. 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 healthcare plan. 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. 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. The episode you're about to listen to was sponsored by touched by type 1. Go check them out right now on Facebook, Instagram and of course@touchedbytype1.org check out that programs tab when you get to the website to see all the great things that they're doing for people living with type 1 diabetes. Touched by type1.org Today's episode is sponsored by the Tandem MOBI system with Control IQ technology. If you are looking for the only system with auto bolus, multiple wear options and full control from your personal iPhone, you're looking for Tandem's newest pump and algorithm. Use my link to support the podcast. Tandomdiabetes.com juicebox check it out. The show you're about to listen to is sponsored by the Eversense365. The Eversense365 has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. Eversensecgm.com Juicebox hi, my name is Erin.
B
And I have type 1 diabetes. I was diagnosed in 2020 and I have a couple of other autoimmune issues as well.
A
Aaron, how old are you?
B
50.
A
You say you were diagnosed at 45?
B
Correct.
A
Okay, a couple of other autoimmune oh wait, we'll find out about it. Let's not rush. Do you have kids?
B
I do. I'm married. I have two kids. I have a dog that I tried to drug with Trazodone before we started recording so he would stop annoying me. That has kind of failed. And. Yeah, teenagers. Two of them, 13 and 16.
A
You don't have drugs in the house to calm them down, right? Just the dog.
B
I gave everyone a Trazodone slurry before we started recording.
A
What kind of dog you have that needs to be medicated?
B
Neurotic. Neurotic. He actually just had surgery, so that's why we. He. He's. He is getting Trazodone every day. Just to help him chill out, to not ruin his stitches. He ate a bunch of rawhide and he had to have $15,000 abdominal surgery.
A
Oh, my God.
B
And now Christmas and Hanukkah are ruined and no one's going to college.
A
So what kind of dog is it?
B
He's a mutt. He's like a 40 pound Australian shepherd slash schnauzer mix.
A
Can I say something unfeeling? How much would a new dog have cost?
B
Don't even get me started.
A
How old is he?
B
Oh, no, wait.
A
How old?
B
Eight.
A
Oh, my. How. What's his life expectancy?
B
I know. Trust me. I've already done all of this math and I just couldn't do it. I think maybe 15 was what I was hoping. I always looked at him and thought, this dog is definitely going to live a long, long time to be one of those, like, blind, stumbling, stinky mutts. So hopefully now he can still do that.
A
Well, let's hope. Here's the most important question. Who gave him the rawhide? Who's at fault?
B
It's actually the best of circumstances. It's my fault. So I can't blame my husband or my kids.
A
I just. I just want to point out what a fully actualized adult female sounds like. Did you hear what she said? It's the best of circumstances. It's my fault. And you meant by that? Aaron, if it was someone else's fault, you would carry this anger to your grave. Is that correct?
B
Oh, there would be hell to pay. Yes. Yep. I was like, you need to. They called it milking. They actually had to, like, squeeze the mass of up through his duodenum and pylorus and then pull it out with, like, a scope down his throat. Yeah.
A
I'm imagining 50 years from now, you're a hundred. Your husband's dying. But it was his. But it was his fault about the rawhide in my alternate universe. And instead of telling him about your wonderful long life or how happy you are with your children and you can't believe that you've lived to a hundred years old. You say to him, do you remember the time you cost us $15,000 by giving that dog or a hide? Do you imagine that was what would happen? Because that's what I feel like. I. I am so worried that the end of my life is just going to be a. Four days of my wife sitting in the hospital telling me all the things I did wrong.
B
Yeah, she probably has a list.
A
Oh, it's in her head.
B
Actual list.
A
It's etched right on her head. And it's definitely written down somewhere. I'll say this over and over again till the day I die. That girl is still mad at me for whatever the first thing is I did wrong to her. For sure she's still aware of it.
B
Okay, well, you town crier, like, unrolling like a stroll of. Just like.
A
Let me ask you another question. Why did you try to kill the dog?
B
Oh, well, I was actually. The rawhides are dental enzyme rawhide shoes. So they were. I was trying. He. He had had some dental issues, and they were supposed to just be. I was buying them to help his teeth and help him stay healthy. And I think what was happening was that the idiot was swallowing them whole and they weren't really. They weren't passing through.
A
Okay, so this is the other day. Our puppy is vomiting on the floor. I go, what is happening? What did you people do to this dog? Nothing. Nobody knows what happened until we dig it out of the pile of vomit, this thing that my wife gave him. And I was like, kelly, I swear to you, I know this is not the right way to talk to you, but I have told you a thousand times not to give these to the dog. They throw up when you eat them. Why do you keep buying them? She doesn't know. I think it's because the package is nice or they look cute, or I.
B
Can'T figure it out.
A
And she's not dumb. She's actually really, really smart. Until it comes to stuff like this. And then what happens to you girls?
B
Seriously, I don't know. I know. I honestly didn't know. I thought I was doing something good. And now here we are.
A
I'm shaming you about it. I'm so sorry. I'm only saying what your husband was thinking and was too smart to say. When he found out it was 15 grand to get the dog helped.
B
Oh, my God, no. He still doesn't know. He doesn't want to know. He wants to remain completely ignorant about the whole situation.
A
He's unaware of the cost of the of the dog fixing.
B
Yeah.
A
Does he know that you are at fault? Yes, he does and he has not. You've now you're going to tell me you've been married for more than 17 years, is that correct?
B
Oh yeah, 20 some years. And he's a lot nicer than me so he won't hold it against me for until the end of time like.
A
I would have in that level. Well, I hope this has been a nice reflective mirror for everybody who's been listening. Let's move on to your stuff. You had diabetes five years ago. How did it present? What did you, what did you see first? When you think of a CGM and all the good that it brings in your life is the first thing you think about. I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a door frame sometimes it gets ripped off. I love that the adhesive kind of gets mushy sometimes when I sweat and falls off. No, these are not the things that you love about a cgm. Today's episode of the Juice Box Podcast is sponsored by the Eversense365, the only CGM that you only have to put on once a year and the only CGM that won't give you any of those problems. The Eversense 365 is the only one year CGM designed to minimize device frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping. You can manage your diabetes Instead of your CGM with the Eversense365. Learn more and get started today at eversensecgm.com JuiceBox 1 Year 1 CGM this episode is sponsored by Tandem Diabetes Care and today I'm going to tell you about Tandem's newest pump and algorithm. The Tandem Mobi system with Control IQ technology features Autobolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my tandemdiabetes.com juicebox. This is going to help you to get started with Tandem's smallest pump yet that's powered by its best algorithm ever. Control IQ technology helps to keep blood sugars in range by predicting glucose levels 30 minutes ahead and it adjusts insulin accordingly. You can wear the tandemoby in a number of ways. Wear it on body with a Patch like adhesive sleeve that is sold separately. Clip it discreetly to your clothing or slip it into your pocket. Head now to my link tandemdiabetes.com juicebox to check out your benefits and get started today.
B
So I took a course of steroids to break a migraine cycle in, I don't know, maybe May of 2020. And then I immediately started noticing symptoms of increased thirst, frequent urination. Just as like a sub context about the healthcare system. The reason that I had the cycle of migraines that needed to be broken is because I hadn't gotten my Botox injections. I'm supposed to get those every three months and they've really been life changing for my migraines. I used to spend a lot of time in a dark room, tried a bunch of different medications, and the Botox has been really helpful.
A
Where do they. I'm so sorry, where do they shoot the Botox to help the migraines?
B
They actually do a ton of small injections all around your skull, around your, like around your face. Like they do it around my eyes. They're nice and they give me a couple of little extra boosts in between, like my eyebrows to get rid of that little wrinkle. And then they do like down your neck and across the shoulders, anywhere that you have tension. Like, so if you hold your headaches kind of like in your jaw, they might put it in your jaw. But it's not a pleasant procedure. It's not. I mean, it's not terribly painful, but it's, it's, it definitely hurts a bit. A lot of tiny injections.
A
Yeah. A lot of little injections, right? Yeah. Okay, so wait, wait.
B
So. And the reason I didn't get it is because at the time it was going to cost me like seven or eight hundred dollars. And I had just had my first of two heart attacks. I had a spontaneous coronary artery dissection in 2019, and I had so many medical bills from that that by the time my Botox appointment rolled around, I was like, I'm not doing this. I just can't. I can't.
A
Arin, let's slow down a little bit. Hold on. You wait. Okay, let's do the list. Start at your earliest age. What was your first medical issue?
B
I was 12 and I got my first period and I almost bled to death because I had. It's called itp. It stands for Immune Thrombocytopenia purpura. And it's basically a really, really low platelet count. So I didn't have any Clotting, you know, I wasn't able to clot, so. And I didn't know because it was my first period that it. That it was abnormal.
A
Oh, you were just draining to death and nobody knew.
B
Correct. Yeah. And I. Prior to getting my period, While I was 11 years old, I did have a lot of bruising. You know, you would just practically bump into me or touch me, and I would bruise. My parents thought my brother was beating the out of me.
A
Oh, my gosh. Hey.
B
Poor guy.
A
Immune thromb. Say it.
B
Thrombocytopenia purpura.
A
It's an autoimmune disorder.
B
It is.
A
Yeah. So you got your first autoimmune disorder when you were 12. It tried to kill you through your lady bits, but you fought back. And then how did you fight back? Did your parents, like, go, hey, did. Did it. Did. Did Dracula just bite Eren, what's going on? She's lying on the floor. She's very pale.
B
Yeah. That. I was lying on the floor, very pale on Thanksgiving. And they took me to the emergency room, and I got blood transfusions and was in the hospital for a bit. And that's sort of where my mistrust of doctors and nurses started. Just even with that experience. I remember a nurse in the emergency room arguing with me and telling me. She asked me how many pads I had on, and I. Because I was, like, stuffing them in there to try to collect all this blood. And I told her, I said, I have five. And she argued with me about how many I had, and she ended up being wrong. But it was just like this crazy experience of just being a child and being very vulnerable and, like, having this nurse. Like, there aren't five, there are only three. Like, why are you lying about how many pads you have on? Like, I mean, just. It was.
A
That was said to you. Why are you lying about how many pads you have on?
B
Yeah, it was really not a good experience. You know, the talk to, like, that. Cause I didn't know how to, like, advocate for myself. Although.
A
Yeah, why would you. Why would you think you should have to. Or. I mean, also, you're 12. Maybe it's your first period. You didn't know what was going on. Right. Also, don't go to the hospital on a holiday if you can't help it.
B
Because that's true. It was their B team.
A
If you get stuck working on Thanksgiving, it's not because you really know what you're doing. You know what I mean? Sorry for all of you are nurses and are like, hey, I I had to work on Thanksgiving last year. But like, it usually means newer or, you know, less. You, you don't have as much swing about or say about the, the schedule, you know.
B
True.
A
So, okay, so you're there. And, and, and did they diagnose this issue at the hospital? It takes a while for that.
B
It did take a while. And from what I understand, the treatment for ITP is different nowadays and it's not as complex as it was at the time back in the 80s. First of all, they thought maybe I had leukemia at first. And then I finally wound up at a pediatric oncologist, hematologist office. And they diagnosed me correctly. The treatments at the time were I got frequent, like short injections of like chemotherapy drugs. So I would have to go into the doctor's office and they would, they would, they tried that. I also went to the hospital every, every month or so for something called like gamma globulin treatments, which is basically like, I think it's like concentrated blood product of some kind, like platelets, maybe that, that help boost your, your platelet count.
A
Okay.
B
So I was doing that and then ultimately I ended up having my spleen taken out because none of the treatments worked. I continued, my platelet count just continued to fall back to almost nothing. And it can be dangerous to, to be walking around being able to clot.
A
They took the spleen out because the.
B
Way it was described to me is that the spleen kind of is the filtration system for your blood and it would it. If you remove it, your platelets don't get filtered out. That's the simple way the doctor explained it at the time. Yeah, and that kind of stuck with me. I don't, you know, that's probably a very simplistic description, but I understand that's.
A
How they told it to you. So when IDP doesn't respond well to first line treatments like steroids or ivig, doctors may recommend a splenectomy, surgically removing the spleen so that it A is where many antibody coated platelets are destroyed and to OR B, I guess it's also a major site where those antibodies are produced in the first place. So they're just trying to take a piece out of the chain. That's. So if you take out the spleen, they say fewer platelets get destroyed, antibody production may decrease. Many people see their platelet counts rise significantly afterwards. So did it work?
B
It did, yeah.
A
Oh, all done. You're fixed? Yeah. Happily ever after. No, no.
B
The end. It was nice talking to you.
A
What a Great little episode.
B
Yeah.
A
What happened next? What happened after this?
B
Well, while I was in the hospital for one of those. Actually, I think the gamma globulin that I'm referring to is what you had mentioned. The IVIg treatment. I think that's what that's called. But I don't remember what IVIG stands for. Anyway, when I was in the hospital for one of those treatments, there was a doctor who came in to visit me while I was alone. My parents worked a lot when I was young.
A
Ern, I'm not gonna be able to take this. Is this going where I think it's going? Cause it's only Monday. Yeah, go ahead.
B
I mean, it's not as bad as it could have been. And honestly, I didn't realize what happened until I was in my 20s and was like, wait a minute. But he came in and just, like, undid my gown and, like, like, touched me in places that he should not.
A
Right.
B
Just to say the least. And I didn't know how to handle that at all. I just got. I just completely shut down and froze. I mean, I just literally physically froze. Couldn't speak, was very angry. Uh, I didn't like it. I wanted him to get the heck out of the room, you know? And then later on, he came back when my parents were there, and I. You know, I didn't have the words to tell them what happened. I didn't really understand what happened, so I just was pretty nasty to him. And my parents were kind of, like, embarrassed because, you know, back in. Back then, you know, you were supposed to be respectful and polite and bow down for a doctor, you know, so. Yeah.
A
So did it ever get brought up in as the rest of the. No. Do your parents know today that that happened, or would they if they were alive? No. Okay. All right. Oh, well. All right. Well, I mean, I guess we gotta give you a pass on trying to kill the dog, right? Like, I mean, seriously, somebody owes you a pass.
B
And it's just one of the many things that's happened over the years that has just been so disappointing with doctors. And, you know, just to bring it back to more recent times when I was trying to figure out about this thirst, I immediately stopped taking the steroids because it was obvious to me my vision was actually the first thing to go really blurry. I couldn't see to drive. Thankfully, I didn't really. It was Covid times, so I didn't really need to drive for work. But the blurred vision was terrible. And then the thirst and frequent urination came So I called the neurologist who had prescribed the steroids, and I explained what was happening with me, and they were like, you're having vision problems. You know, that could be a thousand different reasons you should call your pcp. So I called the PCP and she said, well, you really should talk to the neurologist because they're the ones who prescribe the steroids and it's clearly, you know, a reaction to the steroids. So that was leading me in a circle. So I went to the eye doctor, an ophthalmologist, and told her what my symptoms were. And she shrugged and said, well, welcome to your 40s.
A
Awesome.
B
I'm like, I understand that my vision over time will probably deteriorate, but this kind of happened overnight. Is that, is that a typical experience? Like, maybe I'm just unaware of this part of the aging process?
A
Yeah.
B
But she just shrugged it off. I ended up going to the emergency room, and then I also went and they, they just sent me home. They checked my eyes to see if there was any, like, damage to my eyes. They really don't have a lot of tools at the ER to deal with, like, vision stuff. So they did what they could there except test my blood sugar, whatever. And then I also went to my endocrinologist and I sat in the endocrinologist's office and I told the nurse, I think I have diabetes. Because at that point I'd been reading a lot about my symptoms and I thought maybe I had diabetes. And I told her that. And I talked to the endocrinologist and he said, well, I'm gonna give you a prescription to get blood work done and you can come back in four months. So that's what I did. And it was long enough that by the time I went back, I had an A1. My A1C was 14 and my blood sugar, I think that morning it was like 300 and something. They finally pricked my finger when I went back for that follow up appointment with the, with my blood work results.
A
And you told them, I've been doing a little digging and I think I have diabetes.
B
Yeah, I told them my symptoms. I'm like, I'm peeing a lot. I'm so thirsty. And I know people have talked about the thirst and on the, on the podcast before, but it is just. I remember chugging a Nalgene bottle beside my bed at night and choking on the water like I was trying to swallow it just so quickly. I was trying to get it down so quickly that I couldn't Swallow fast enough. It was just a really intense thirst that I can't quite describe.
A
Yeah, but you have other. So you're also a person who gets. Are they cluster headaches or migraines or what do you got?
B
Yeah, I have a history of migraines, which I've had since I started my getting my period. I think that hormonal change is where they started. And I'm hoping that when I'm finished with menopause that they'll go away. Just because I've heard anecdotally that that does happen with some people.
A
My question is like, your husband's used to not feeling well, but could he tell that you were extra sick before your diagnosis with type 1?
B
Just the vision because he had to drive places I couldn't drive and see.
A
So your vision's. Wait a minute, there's no. So there's no answer about the vision. Just like, hey, you can't see anymore, huh? Oh, well. And then you're like, and I'm peeing a lot and I'm super thirsty and no one says anything.
B
Right.
A
Okay.
B
And I just imagine that when I was sitting in the endocrinologist's office that day that, I mean, how many. They have to have meters in every room, in every exam room. I don't know why they didn't just. Just check my blood sugar. They just do it.
A
Well, just why? I mean, so far you've got three stories and not nobody stood up in any of these stories and done the right thing. So. Yeah, yeah, you figured out how, like, what's the last way they just finally you said they figured it out. But I'm sorry, tell me again what happened where it was like, hey, you have diabetes.
B
Yeah. So I went back for the follow up appointment with my test results. They then the nurse looked at my results and then looked up at me and she was like, and you, you're telling me you haven't eaten yet today? I'm like, no. And she was like, I'll be right back. So I was like, oh, God. So she left the room, she came back, she said, I'm going to have you talk to the doctor. So I did. And I. This doctor is such a nice man. I'd been seeing him for about 20 years for my thyroid at this point. I know his wife. I watched his son grow up in the community. I looked at him like a father figure. I know that he cares about me as a person, as a patient. At that point, he definitely was taking things seriously. And I am very sure that he was regretful that he hadn't dealt with it four months prior, but he told me that I had diabetes. And he said, look, our office is about to close for lunch, so what I'm gonna ask you to do is go and get yourself lunch and then come back at 1 o' clock and we are going to show you how to use insulin. So I think he knew I had type one just because I think he understood that I had a history of autoimmune disease. So I think he, he, he, I at least didn't get a type 2 diagnosis. I didn't have to deal with that nonsense. But so I left, I went back after lunch and when I walked in this time, he said, you know, I've thought about it and what I really think we need to do is send you down to the er. So I went down to the emergency room and from what I understand, he wanted me to go there so that I could get immediate testing. And that was the fastest way to do it. Okay, was to send me in through the er. But when they tested me, they saw that I wasn't like fully in dka, but whatever. I don't know if your body becomes like, acidic or whatever, but whatever test that measures that was concerning. So I did get admitted and I spent a week in the hospital where they brought my blood sugar down slowly with the, you know, the IV insulin. A kind of funny incident about that is my, my nurses were switching shifts at about 11 at night. And the nurse who was leaving said, okay, well, the doctor said that we're not supposed to put the rate above, you know, whatever the rate was. And, but he didn't put that in his chart, in my chart notes. So the nurses were standing there at 11 o' clock at night arguing with each other about where to set my insulin. And I'm sitting there and I'm like, oh my God, if they give me too much insulin, I'm not gonna feel good. I mean, I didn't really understand diabetes at that point at all. But I did know that if they gave me too much, I wouldn't feel well, that I would go low. Um, so I was like, pardon me. Like, I, I hate to interrupt you're arguing this conversation, but I, I, I, I was present when, when the doctor said not to go above this rate. So if you could please consider setting it at the lower rate. Just because I don't want to feel sick or get low blood sugar, whatever. I don't even remember what happened. I just remember them arguing at my bedside and I thought it was insane.
A
Hey, dummy, look over here. I was listening, and I just need you to just pick the lower number, okay? Especially because it sounds like one of you is going home, and the other one's probably about to go smoke weed, then fall asleep in the lobby. So I really. I need somebody to just. Just take care of me a little bit. So now you have four stories, and nobody's, like, sticking up for you or doing a good job. How does this keep happening to you? Do you have bad luck? Do you have a face people don't like? What is going on exactly?
B
I don't know. I really feel like I'm, like, contagious, almost with autoimmunity. Like, I feel like I'm. Even though my kids are fine, they don't have the markers. I did have them tested through Trialnet, so thankfully, they don't have anything. But I just feel like. I don't know when I. Well, I. I mentioned this in my note to you. I don't know if you remember, but my dog, My other dog died of. Apparently there's, like, a canine version of ITP and he had it. And I suspected that he had it because he was sneezing blood around the house. And I was like, oh, my gosh. This dog is, like, bleeding through his, like, membranes. And so me being, you know, a doctor, I'm like, oh, he must have blood platelet count. So I take him to the vet, and I'm like, he's bleeding. And they looked at him, examined, examined him, said he was. It was fine. He probably injured. There was probably an injury inside of his nose that we couldn't see. And it continued to happen. And I took him back to the vet about a month later, and he. His platelets were so low that they. He had to be put to sleep. It was so sad, but I felt like it was just a really crazy thing to have happen. I felt like this is nuts.
A
What?
B
Like, why am I so cursed with this crap?
A
Yeah, I think you're. I think we have to call your episode Gesundheit, too. But I. Wait, Stop. This odd autoimmune issue that you had when you were 12. How many years later killed your dog?
B
It was in 2022.
A
Get the out of here. Are you serious?
B
I am not kidding.
A
Oh, my God. Oh, my God. Did he flip you out of the door?
B
It was, like, at the vet, even I had. I was having the same ridiculous conversation with the vet that I feel like I keep having on repeat with every medical professional that I see, which Was. I think he has low platelets. Can you test for that? Can dogs get, you know, itp? And the vet is like, well, that's very unlikely. What this probably is is blah, blah, blah. And then he has to come back in the exam room later with his tail between his legs.
A
Literally.
B
Yeah, exactly. Telling me, oh, yeah, his platelet count, it was so low. It was like in a single thousands, which is very low.
A
Unbelievable.
B
And the treatments for it at that point were so ridiculous and not. It was going to be torture for the dog.
A
Right.
B
And he was a very large, beautiful dog, so it was going to be hard to take care of him.
A
I got to tell you, this is insane, what you're telling me. That is the oddest. I mean, bad luck. I think I maybe have ever heard.
B
Oh, well, actually, I should mention. I'm like, oh, so what happened? I was so grief stricken by this, by this dog dying, that I had another spontaneous coronary artery dissection a few days after we had to put him to sleep because you haven't asked yet, but I am Irish and that relates to the autoimmunity. But also, I like to shove my emotions deep down inside.
A
I can tell by you, you're having to use Botox to get the stress out of your forehead. Yeah.
B
Instead of letting, you know, letting my emotions out, I just kind of stifle them. And then I feel like it comes out in bad ways, like the heart attacks. So I ended up in the hospital again with another coronary artery section.
A
The first heart attack happens at what age?
B
40? It was 2019, so 44.
A
44. The year before you got diabetes. Yeah, the next. The next one happens after the dot. Wait, when does the next one happen?
B
20, 22. So three years later.
A
How come they don't kill you? What's happening when, like, what. What's the process of. I don't feel well to.
B
We're all cardiologists. That it's because I'm lucky.
A
So you say I am not lucky. Here's a story I'll tell you.
B
Yeah. Yeah. A spontaneous coronary artery dissection, which is called a SCAD for short, which is, I think is funny because of your stories about your child going to.
A
That'll also break your heart. Scad Will, by the way, I would always.
B
I, I. We drive to Florida pretty often because my in laws live there and we always stop in Savannah on the way down. So I always take selfies in front of the SCAD sign because I'm like that. It just struck me as Funny.
A
Yeah. Awesome. Send them to me. I'll cry. That's fine. So it's when a tear. It is. Hold on. It's when a tear forms the wall of a coronary artery, the blood vessel that supplies the heart muscle. Blood seeps between the layers of the artery wall, creating a false channel that. That can compress the true lumen where blood normally flows. This blockage restricts blood flow to the heart muscle, causing chest pain, heart attack, or even sudden cardiac arrest. Awesome. So you've. You've had cardiac arrest or how do you.
B
I did not, but I did have a myocardial infarction, so I did not have cardiac arrest, thank God. But I. My dissections occurred more distally, so the closer they are to the big heart muscle, the more dangerous it is and the more serious it is when they occur more distally, like mine did, there's going to be less damage. And so, you know, I am lucky really, that they didn't occur closer to the big heart muscle. And the only treatment for it, they do a heart catheterization. They did that both times, which is just a procedure. But it's still a little scary to be put under and be, you know, they read you all of the, like, things that can happen, including death. You know, it's a little. It's scary to go through that, but really the treatment is just time and a little bit of medicine. Uh, I'm. I'm only on a. I'm just on a beta blocker now, so, you know, all things considered, if they, you know, I really was lucky. So. In fact, you know, something I wanted to mention to you about the heart attacks is that I. I've just listening to the stories and I've listened to the podcast. I think I'm up through episode like 1580 something at this point. I'm not caught, totally caught up, but I've listened to all of them from the beginning. And this type of heart attack occurs a lot of times in women who've just had a baby. It happens to younger, healthier women. And one of the stories that you had on real early on was about a grand was with a grandmother and her. I think her daughter had died of a heart attack pretty shortly after giving birth. And I thought, oh, my goodness, I wonder if, like, that was what had happened to her.
A
So super interesting, I have to tell you, like. Well, first let me ask, is there any other issues that we haven't gotten to yet?
B
I have Graves disease.
A
Oh. When were you diagnosed with that? Just real quick in College. College. Okay, so the thing. Graves disease. Okay. Other autoimmune in your family line included.
B
My dad has Graves disease.
A
Dad has grace. Does anybody have type one?
B
No.
A
Okay. Does anybody have bad luck? I'm just kidding. I was teasing you. I'm sorry.
B
We do tend to have Irish luck, where we always have to do things more than once to get it right, but.
A
Is that what they call that? Okay, so your dad has graves, but, like, going back to your family line. Celiac. Somebody got celiac?
B
No, no. And I did get tested for that, thanks to you. And I did also get tested. This is an autoimmune. But one of the hardest things medically that I've dealt with has been low Ferritin. And I didn't know what ferritin even was before you started talking about it.
A
Wait, is this a story, Erin, about how I've saved you?
B
Yes.
A
Speak slowly. Speak slowly. Go ahead. Thank you.
B
Yeah, I insisted. When they went to test my iron after I was so fatigued, it was just absolutely crazy. And I remember feeling the way you described.
A
Okay.
B
I felt like you described, with super fatigue. I remember you said at some point, you bent down to reach something off the ground, and you felt like you were just going to keep falling to the floor or something like that. I was like, bingo. Yes.
A
That's how you felt.
B
Yeah. And I finally got. And I had almost. I think my ferritin was one. And my iron and hemoglobin and all of that were. Were low as well.
A
My goodness.
B
I ended up going to the emergency room with that because I was just. There was. I just thought something was very wrong. I thought I was going to die. And I ended up getting three consecutive days of iron infusions.
A
Okay.
B
And those brought my iron up to, like, six or something, or my ferritin.
A
Not high. Not high enough. So you know why? Because in the hospital, they give you this little pissy amount of it. Not like they would if you went to an infusion center and had a hematologist working with you. They give you. They give you a little bag instead of the. The good. The whole.
B
The whole G. Yeah. And I did. That's. What I had to do was go into the infusion center and then get another. Like, get an infusion. And so far. So, I mean, I just actually had it tested, and it was like 46. It went up.
A
That's better. Are you still bleeding?
B
No.
A
No. Okay.
B
I got an IUD placed after because I wanted to rule that out as, like, a cause of the low iron.
A
But that's not been it.
B
Well, I mean, it's. We'll see. I. I get the tests done every three months, so I. I'll get tested one more time before I go back to the hematologist. So I'm curious if it will continue to fall down lower than 46. But.
A
So 46 for your ferritin, it's not terrible. Like, it's not as high as we want it to be either, right? Yeah, yeah, yeah. So do you still have children?
B
When they ask me if I'm tired, I'm like, I've been tired since 2009. Like, I have children, so tired.
A
Like, so what. What is your plan? Are you going to get another infusion if the number comes back lower again, or are you having a doctor that's even willing to. To talk about that? 70 ferritin? Because you remember Dr. Benito said 70 bare bones for a woman of menstruating age.
B
Yes. Yeah, yeah, yeah. I'm definitely going to talk to him. I'm going to kind of wait and see where it goes from 46 and see what he thinks. I'm going to give him a chance. He disappointed me with his. When I developed the low ferritin and low iron, I also. When I was in the hospital for that, they. They saw that I had really low blood pressure, and I also had developed, like, a tremor. And I was. And I don't know why. I don't know what the cause is. I mean, I assume it's autoimmune, but I don't know what the cause is of these additional problems. So I've been talking to all my doctors about it because I'm not sure what the answer's going to be or if I even will get an answer right. So whenever I described my tremors to him, I described them like this. I said, they're sort of like, when you're cold and you're shivering, that's like. I wake up, like, just with that kind of tremor.
A
Okay.
B
And he looked at me and said, have you considered that you might be cold?
A
Oh, is he still alive? Or where'd you hide the body?
B
And this guy is, like, 7ft tall. He's seriously so tall. I'm like, I'm gonna stand up on the exam table, like, punch you in.
A
The face, beat you to death. That. Since, have you considered that you might be cold also? You have graves disease. Right?
B
Right.
A
So can't that be impactful on that as well?
B
It. It definitely could. I mean, I. I did have the radioactive iodine treatment for that. And I'm on. I'm on levothyroxine.
A
Right.
B
So it could have. But it could have been possible that I was being overmedicated for the thyroid. I was really hoping that you would ask me what my TSH is.
A
You can test, tell me. I don't have to. Wait till me. Yeah, you got.
B
It's like. Don't play games there. It was 10 last time. Oh, I know. And I don't know why that my TSH is over 10 and my free T4 is normal. It's, like, perfect. And I don't. Graves disease is one of the things. I just haven't done a nosedive into research about the thyroid. I like. I just can't. You know, I've already learned way too much about diabetes and the scads. I'm done learning things, so I don't really, truly understand the relationship between the TSH being elevated and still it's free T4 showing as normal.
A
Right, Right. And so you're having trouble. You just don't know where it's coming from. Do you want to. Do you want to do a fun exercise for a second?
B
Sure.
A
Do you want to ask the Internet?
B
Oh, I definitely have. I'm a huge GPT fan.
A
What did it come up with?
B
No, I mean, it. It didn't really have any answers. It's. It did suggest pots, I think, for the blood pressure and tremor. I had my neurologist do, like, a Parkinson's. She did, like, a little neurological exam on me, and she was. She said that the results were. Were good. Cause I was worried that I had something like that.
A
Hey, have you had Covid?
B
I have.
A
Do you think you have long Covid?
B
I mean, I guess I could, but I don't. Not. Not that I've ever been told or. I haven't noticed anything in particular.
A
You haven't noticed anything? Like, you don't get, like, wasted, like, after activity and can't bounce back for days or anything like that?
B
I. I do kind of, but I always attributed it to the heart attacks because I do have a little bit of impact from those just on my, like, energy level, so.
A
Yeah. No, you mean you have a. A number of different issues going on, that's for sure. It's a lot to kind of try to consider while you're trying to figure out, like, what's going on with you. So let's do real quickly, just to check. Excuse me. Persistent fatigue or extreme tiredness. Yes or no?
B
Yes.
A
Fever, chills, or sweats?
B
No.
A
Unexplained Pain, muscle aches, Joint pain? No. Brain fog?
B
Oh, yeah.
A
Headaches, Dizziness? Yes.
B
Yes.
A
Sleep disturbances, Pins and needles sensation?
B
Sleep disturbance, but no pins and needles.
A
Shortness of breath, Difficulty breathing? No. Do you have a cough?
B
No.
A
Chest pain? Palpitations? Faster pounding heart?
B
No, I. I have intermittent chest pain, and that's normal from the heart.
A
I'm gonna. I think that might be the Irish thing too. Diarrhea, Stomach pain, Constipation. Bloating.
B
No.
A
Changes in smell or taste. Skin rashes. Hair loss.
B
Hair loss, Hair loss.
A
So, I mean, a lot of this stuff overlaps with different things. Obviously. I don't know that you classically feel like, long Covid. I'm not sure, but it would be a thing you'd really notice. It would have been like you had Covid and then it ended, and then you were like, my God, my has changed a lot. Like you have. You didn't have a big shift like that, right?
B
No, I didn't.
A
Okay. We're not really ready to talk about it here on the podcast, but I interviewed a lady not long ago who told me how she used nicotine patches to help her with her long Covid and. Right. And I went down to my wife who was struggling and been struggling for a long time, and I said, I'm gonna slap a nicotine patch on your ass every day for 30 days and see what happens. And you know what happened?
B
What?
A
She feels a lot better.
B
That's nuts.
A
Yeah, it's cray cray. But I'm not ready to talk about it yet because I don't have enough of the, like, long range details of.
B
It, but I happen to have some nicotine patches because of my 16 year old convincing the doctor that he needed nicotine replacement therapy for his zins addiction.
A
Oh, my God. Did you try just hitting him? Like, because that's what we would have done in the 70s. They would have just like smacked them and then put him in a room and left them there for a couple weeks, then brought him out again. Do people know how parenting used to work? You grew up with it, Aaron.
B
Right, Exactly. And I do. I tell him. I'm like, if this were 1987, I would be hitting you with my shoe right now.
A
Just so you know, not.
B
I'm not allowed to do that.
A
So we're gonna get you a nicotine patch for your Zen. And by the way, where do you get money for that exactly?
B
I have no idea. I don't. I probably don't want to know.
A
Yeah, it's possible. So dig a Little more into your heritage thing, like, so, I mean, you've brought it up a couple times. I didn't bring it up, but anxiety, stress, chest pain, what else do you think is from your Irish background? I don't know, give a lot. What do you do? Does your, does your life health wise and your mental health and all that, does it mimic your mom or your dad?
B
Just the shoving, the emotions deep down definitely is, you know, I, yeah, I mean, that, that's huge.
A
You went to church every Sunday, did you?
B
Yes. Well, I'm Jewish now, though. I, I, I converted.
A
For a boy?
B
Yes.
A
Oh, that's nice. Does the, does the guilt transfer, does it feel the same?
B
It's completely transferable. It's coming in quite handy.
A
I, I just, But I, I mean, look, my wife has a background like, similar to yours probably. Like, right? Like Irish, English, that kind of thing. And, and I mean, the, the amount of, the amount of times that I look over at my wife and she's rubbing her chest and she's like, I'm gonna have a heart attack. And I'm like, I mean, I really feel like you would add it by now.
B
It's, Yeah, I mean, I have that feeling all the time. I mean, and some certain stressors definitely make me hold my chest and take deep breaths and try to remember where I put the nitro.
A
But it's, yeah, well, but you've had one, though. I mean, it's a different story for you, you know what I mean? Like, my wife's had, you know, stress tests and blah, blah. She doesn't have any problems with her heart. Like, she's just, you know, she's works really hard and she has a high stress job and sometimes the stress gets to her and I see her pushing, you know, between her clavicle and like over here, like, wondering, and I'm like, you all right? She's like, my chest hurts. I'm like in the same place. Always in the same place. It's always top right more, you know?
B
Yeah, yeah.
A
And she, you know, you should try stop working. I can't stop working.
B
That's where my pain was in my, it radiated more to the right side of my chest and then in my, in my joints. I had pain in my joints, in my upper body and only my upper body. I thought it was so bizarre that I didn't have, you know, every knuckle hurt in my hands, but my knees didn't hurt, my elbows, my shoulders, all my joints were so sore. And I think I did a really good job Convincing the emergency room doctors that I had Lyme disease. Because that was what I thought. I thought, I have. I think I have Lyme's disease. So my dad had just had it and he described it as like a roving joint pain. And that's kind of like what I was feeling. And they were about to send me home with some pain pills and thankfully my troponin levels came back right before they discharged me. And they were like, actually, nevermind, we're gonna.
A
You might get to stay for a little while.
B
Yeah.
A
Are you, are you a hypochondriac? Like, do you see a lot of illness? You're always right.
B
I mean, like, isn't that like, if you're wrong.
A
No, no. I just wanted to make. I wanted to make sure that you weren't leaving out the other 37 things that you thought you had that you didn't have, that you just, you just got lucky on four of them. That's all.
B
I thought that was a reasonable guess as to what was wrong with me with the, with the joint pain. Okay, but what about. To be. And I. And that's. That happened again with the second incident too, so I kind of knew what to look for.
A
Well, I mean, honestly, limes is a thing that everybody. Limes, pots, all that stuff is where people land when they can't get. They can't get answers about the sorts of things that you're describing.
B
Right.
A
Because it leaves you in nebulous land. What do you have? It sounds like lupus to me. Like. Well, what does that mean? Like, you know what I mean it. And especially the way doctors, you know, the way medicine's set up. A lot of these things are diagnosis of. How do they put it? Diagnosis of elimination. Right. Like, you don't actually know that this, this, and this equals that It's. Well, you don't have all these other things. So we've eliminated these things as your possible issue with. Which leaves us with this smaller pool of more nebulous stuff that it could be. Yeah.
B
And it's not as satisfying of an answer.
A
No, of course not. No, there's no answer.
B
You probably, you know.
A
No, the answers are satisfying when your problem goes away. That's, that's. Well, yeah, that's the end. And that doesn't happen enough for people who have stuff that overlaps like this, which a lot of the times does with autoimmune. A lot of overlapping stuff.
B
Yeah. Well, you know, I heard you say something recently about blood pressure, low blood pressure, and how it could be connected to the thyroid. So I thought, you know, I. I did get the doctor to write me a script for a higher dose of levothyroxine. So hopefully my TSH will come down, my hair will be better, and maybe my blood pressure will be better, too. Who knows?
A
Yeah. I don't know. It's. But it really is something. Like, it's interesting to watch you, like, track it a little bit. But you said you're tired of tracking it, too. Like, when you got to the graves thing, you're like, that's it. It's a bridge too far.
B
Yeah. Yeah. And even though that diagnosis. I think. Because that diagnosis was. It was just a little bit of an E. You have a sickness. Here's a pill. You know, I mean, I did have the radioactive iodine stuff, which was more of a procedure, and it was kind of a pain in the butt for the most part. For the thyroid, it's just, here, take this pill, which is a lot easier than dealing with. With diabetes.
A
Yeah.
B
So.
A
So let's pivot a little bit here. Okay. Like, you've been through a lot. You're doing a good job of tracking your own health and figuring things out for yourself, but it hasn't gotten you to exactly where you need to be. You've figured out a lot of it by listening to me talk through other problems, too, right? Because that is really what's going on. Right? Like, you. You listen, and I'm like, oh, maybe it's this. Maybe it's that. You start doing that for yourself. You figure things out. What. What would you want to leave in the podcast for other people? Like what. What do you mean? Like, what about this conversation do you think would end up being helpful for someone like you?
B
You know, I. I'm.
A
It's not an easy question. I just don't know. Like, is there something that you can identify about the podcast that you think, like, there should be more of this right now? Is it a. Is it a. I mean, did you have to.
B
I get so much out of the podcast, I can't even tell you how much I get out of it. And I actually found myself worrying about what would happen if you got hit by a bus, Because I was like, well, he's got all these episodes that aren't published or whatever you call it. What's going to happen to those? Because who's going to do all of those?
A
Oh, Aaron, thanks.
B
I mean, I know you're going to be an AI bot or whatever that if we can ask questions about diabetes to you, to like your avatar or whatever.
A
Can I talk to you like we're friends for a second?
B
Sure, honey.
A
Do you go to therapy? Are you okay?
B
Oh, my God. The last time I went to therapy, I actually did really like my therapist, but I did want to talk about diabetes and how stressful it is, and it just came. She had type 2, and I was just like. She just kept telling me all about type 2, and I just couldn't.
A
Bad therapist, huh? Like telling you about her.
B
Yeah. And you know a lot of people. That's partly why I wanted to talk to you and come on the podcast, because I feel like your talking to you is like the pinnacle of having a conversation with someone about type one who really gets it like that. That need to have understanding, to have community, just to talk to anyone, someone please understand. Like, that is such a strong sense that I have that. That need to kind of connect. And I really don't have anyone. I mean, I do use the Facebook group. I'll go in and Google certain issues just to see what else has been posted about it. You know, I check what people are posting every now and then. So I do appreciate that that community is there. But where I get the most sense of it is from listening to your conversations with people through the podcast, like we're doing now, just to be able to relate. These people get it, whether they're a parent or a person with it. And then sometimes you'll get those extra. Actually, not just sometimes. I mean often. Like, I'm getting things to consider about thyroid, things to consider about iron and ferritin. Ozempic. Had you not done your weight loss series that was. You know, I'm on ozempic. I lost £80.
A
Wow.
B
I. I've just been really influenced by the. By the podcast, and I'm so thankful for it. So I'm glad I'm getting an opportunity to tell you that in person.
A
Oh, well, I'm glad for you. That's awesome. You lost how much weight?
B
80.
A
In how long?
B
Like a year and a half.
A
Does. Does the time you've been on that and lost weight coincide with your iron going back up by any chance?
B
I started.
A
No, no.
B
In fact, I'm wondering if it's going. I'm wondering if, like, the blood pressure might be. My. My. My endocrinologist suggested that it's possible that, like, my homeostasis is a little out of whack from the rapid weight loss and that my. He's hoping that my blood pressure kind of regulate better once I'm and I'm. I'm pretty. I'm holding steady at around £140, so I'm doing. And I've been there for a couple of months, probably four or five months, so.
A
Well, that's awesome. If you wouldn't have mentioned the. The TSH being higher, I would have thought maybe you lost weight, so your medication's too strong, and maybe that's what's making your blood pressure lower.
B
Well, and that did happen where the. The Ozempic impacted my thyroid meds. I am the one who did need to, you know, ask the doctor about that and get it. Get my medicine decreased. I was on 115 grams, and I ended up down to 88, and now I'm back on to a hundred to try to get that TSH down.
A
Oh, damn again. That's good. It sounds like your doctor's pretty flexible about the thyroid and doing a good job with you.
B
He's pretty flexible. I mean, you know, I see how much he charges for my hour that I go and see him, and it's like $4,800 or something like that.
A
Really?
B
I'm just like, yeah, I think it's crazy.
A
Wait, have I helped you more than him? Oh, why am I not charge you for this podcast? How come the. The podcast costs $4,800 not to listen to? That's it. Everybody send it over. Find out where my. I don't want to say that anyway, just. You figure out a way to get me the money.
B
Do you take UPMC Health Plan?
A
Listen, maybe I. Maybe I should. I don't know. No, I'm just teasing. That's. But yeah, I mean, I'm just saying any. Any doctor who's willing to move your thyroid met around even is a pretty good doctor, because a lot of them won't do it. So.
B
Okay.
A
You know, like, so that's pretty great that you have somebody that's listening to you and being flexible about that. So the podcast helped you how long you've been listening to it?
B
Since about probably the very beginning of 2021.
A
Wow.
B
Found it just a few months after I was diagnosed.
A
How did you find it?
B
Well, I ended up on a diabetes Facebook page, and I. So I joined. I don't remember the name of it, but I joined a diabetes Facebook page, and it turned out it was really more for type two, and I didn't, at that point, really understand the difference, the differences.
A
Ye.
B
Someone in there suggested that I listen to the Juice Box podcast.
A
Awesome.
B
And I did.
A
Very cool for people to do that. And You. I guess we should talk about a little bit your diabetes.
B
Oh, Geez.
A
Where's your E1C at? What's your variability like? What kind of gear do you use? Do you have a pump? That kind of stuff?
B
Yeah. So I'm on the Omnipod 5 with the Dexcom G6. I recently found out about the Twist pump, so I'm getting that soon.
A
Gonna try the Twist?
B
Yeah.
A
Okay.
B
I'm. I would because I've been thinking about looping. It's just hard to.
A
You don't wanna get involved in that.
B
Well, the barrier to entry is just a little bit more than I can handle right now. Just like setting it up and stuff. It. It's not that I couldn't do it. I just don't. I just don't have the mental wherewithal at the moment. So I think when I heard about the Twist, I thought, wow, it uses a more aggressive algorithm. Cause the Omnipod 5 is a little disappointing. It's just not aggressive enough with keeping me in range. It can't even handle like my morning, my feet on the floor, like I'll shoot up to like 180. And if I didn't eat and I just let the Omnipod 5, you know, handle it on its own, it would take, you know, six hours to bring me down.
A
Oh no, I don't think you're going to get away with not bolusing with. Yeah, I want to be clear. I don't think you're getting away with not bolusing with the Twist either.
B
Yeah, no, but I. I think it has some benefits that I'm going to really like.
A
I hope so. I think the first version of Twist is based on Basil and I'm hoping that they release maybe another version of it that maybe does more micro bolting for higher blood sugars. It's interesting. Listen, as long as you use my link, I think that's really what matters.
B
Every once in a while I just go into one of the podcast details and I just click on all the links.
A
You're going to buy something to wear once a while.
B
Thank you.
A
Yeah, that's for everybody. Please click on the links and click on the links and buy a thing. I don't care. Do you need sheets or anything like that?
B
I did order a T shirt, but that's not what you mean.
A
No, I mean it. Cozyearth. Cozyearth.com use the offer code juice box to check out to save. I think it's. I don't want to say now be wrong. Well, this isn't actually the ad. I think it's maybe 40%. Is it 40?
B
I do get their text.
A
They are persistent.
B
Very. Oh, my God.
A
They want you to buy more sheets, that's for sure.
B
Want me to wear their loungewear? It does seem comfy.
A
I have to tell you, that's not a bad decision. I exclusively fly in Cozy Earth clothing.
B
Oh, that's so funny.
A
Anytime I get into a plane, I have a Cozy Earth sweatshirt and sweatpants on. Every time. Like, it's just, I don't know, it's.
B
Well, I'm not wearing Cozy Earth or getting on an airplane anytime soon because I have this $15,000 dog.
A
No. Yeah, you can't afford anything. $15,000. It's not even the dog that is worth 15 grand. It's the, that's like, that's like having trees cut down. Like, you start with an amount of money and trees, and when you end, you don't have the money or the trees.
B
That's so true.
A
You have you. But that's maybe the most Caucasian thing I'm going to say today.
B
And then, and it's like a, and it just a metaphor of being an adult.
A
Like, yeah, no, it really is. Like, when did everything start costing a th $1,000 every, every time somebody says something to you, it's like, is that, how much is that? And it feels like it's always hundreds or, you know what I mean? Like, it's never like a, a low. It's never $20. Nobody ever needs $20, I guess, is what I'm saying.
B
Oh, and it's never fun. It's not fun to have trees cut down or get a new H vac system.
A
I had a guy tell me one time, like, hey, I think you're going to have to replace this air conditioner. I said, yeah, what's one? He goes, it's shot. And I was like, what's it going to cost? Replace? He goes, seven. And I was like, does it work? And he said, yeah. I said, I, I'll be riding it a little longer, by the way. I've been riding it for four years. He told me, like, it has to be replaced. Rain. It's not going to make it through the summer. I'm like, you son of a. You know, he just had a bill he had to pay, and they talked me into replacing an air conditioner. I couldn't afford to a place. Okay. So, I mean, I, I, I'm going back to my question because I, I, I don't, I don't Love the answer, but I understand why you don't have one. About, like, what. What do you think people need to hear that's valuable for them? So, like, what about listening to the stories gave you the, like, the motivation to just go out there and try a weight loss drug for yourself or, you know, try to get better answers from a doctor? Like, what about this does that for you?
B
You know, I. I just think it goes back to the sense of community and whether that's on a micro level or. Or a macro level, like with the Facebook page, or just in general listening to the podcast because it's more on, like a micro level of rel. Person you're speaking to. You know, the other day I heard someone say the omnipod 5 wasn't aggressive enough for me, so I. I upped my insulin or my. My insulin to carb ratio, and I was like, you know what? I've been meaning to do that. And I did it. I just did it. I just took the 30 seconds that it takes. And it was listening to that person say that thing.
A
Did it work?
B
And it did. Yes, because I'd been. And, you know, it's a little hard with the Ozempic because it messes with your insulin sensitivity, and it messes with it in a way that's not consistent. You know, it's. It. It makes your insulin sensitivity stronger when you first give the injection, and then it kind of peters out by the week's end. Yeah. So, like, you just have to kind of. It's part of that mental math that you have to do where you're considering, like, all the different variables when you are going to dose yourself. So it's just another variable that I have to consider. I. Before I. And so I'd gotten a little bit shy about bolusing because I really wanted to avoid the lows, but really, my insulin to carb ratio is not correct, and it's better now. And listening to your podcast is sort of the same as, like, setting a lower target from my Dexcom on my. On my app.
A
Oh, it keeps you engaged?
B
It just keeps it. It just keeps me more cognizant of what I'm doing. I have pre bolusing on my mind a lot more when I take breaks from the podcast. I swear my A1C goes up just because it's not on the top of my mind, like it needs to be. I'm actually hoping that, with the twist, that I can get my settings dialed in really well so that I can think about diabetes a little bit less.
A
I wish I could remember the person who said it to me so I could thank them every time this comes into my mind. But, you know, I'll tell this really briefly again. I was interviewing this person, I think, in her late 20s, and she was telling me, like, being really effusive about how much the podcast helped her. And I was. It was years ago. I think I just leapt to the idea, like, oh, I must have explained to her how to bolus or something like that. Right. And I. So I started saying, like, oh, what helped you? Was it the pro tips or the button? She goes, no, I knew how to do all that. And I was like, oh, I don't understand how the podcast helped then. And that's what she said. She said that it somehow keeps her connected to her health without making it feel front of mind. So she doesn't feel like she's always thinking about diabetes, but yet somehow she is, and she's doing better for herself, almost not on purpose or unknowingly. And that is what you just said, too. Okay.
B
Right. And even in the beginning, I remember calling an endocrinologist after listening to the podcast for a couple of months, and I said, I didn't know that I could correct a high blood sugar. I didn't. Oh, he put me on a sliding scale. He put me on enough basil to, like, kill me. I had. I tapered down to get to the right dose. I'm glad that occurred to me. I just didn't even. It didn't even occur to me that I could correct a high blood sugar. I. And I. I feel so stupid saying that, but it's true. I just didn't know. I did. I n. The nurse practitioner just. She said, well, we can't really tell you everything all at the same, you know, all upfront.
A
You could have mentioned that.
B
Yeah. I mean, I thought that was a pretty basic thing to share, but it's been that way. I mean, I've learned so much about all of the different kinds of pumps about. I love when you have the experts on Dr. Blevins. I love listening to him. I think he's so fantastic. I love Jenny and Erica. I'm. And. And. And then the regular conversations that you're having with regular people, too, they're just fascinating. Just love it. I'm glad. So, but even, like, hearing about. Back in the beginning, I had a really strong honeymoon period, and I. I used diluted insulin, and I set. You know, I set all of that up for myself, and I'd heard. Heard about it through, through the podcast.
A
That's awesome. Oh, I can't tell you how happy I'm to hear that. Thank you for sharing that. I really do appreciate it. I, I swear to you, I mean, it's been a long time now, so it's not that I don't have like a cognitive understanding of it, but I'm not doing it on purpose. Like, like, I, I, I'm glad it's helping you, but if you think I sat down, I thought, let me do this, this, this and this so that Aaron does better. Like, it's not, I just, I think there's something about the mix of how it occurs to me to make this thing that works for some people.
B
You're very good at what you do.
A
No, that's right. I don't know what it is I do though. I, I just know that I think there's some basic ideas that people need to have and when they have them, they do better. It just, and you have to keep saying, you have to be willing to continue to say them. I did a talk on Saturday afternoon. It was like an hour and 15 minutes for a camp in Georgia and I, there was a big group of parents in the room, like just, you know, and, and I sat there and I thought, like, I, I've given this talk so many different times. I don't know that I couldn't say it with my eyes closed, but I did it because I know that's another 40 families that get off in the right direction, you know, and then they've got a chance and their kids have a chance and they have an opportunity to learn more stuff or to see some a B testing work out in a way that makes them think like, well, I should look further into this or let me keep doing this thing that works, or I wonder if this works, what the hell else might help, you know? And, and I, I don't know, I just, I sat there and I thought like, that it would be easy to make fun of me and say like, oh, there's that talk he gives people all the time. And I just think it's, I think people need to keep saying it so, you know. Absolutely.
B
Reach more and more people. Yeah. Unfortunately, we keep having people diagnosed with this and I feel like, I mean, you're so, well, you're good at what you do, but I also feel like you're very lucky that you have a purpose driven life. I think that's admirable and enviable that, that you, that the work you do is so meaningfully impacting People, thank you.
A
I feel that way as well. I am very lucky to not get up in the morning and just do a thing because somebody pays me for it. You know, like, it is good to feel the way you're describing. I did some stuff over the weekend, just trying to pull ideas together for you guys for later. And I have to admit, like, it felt that lucky's the right word. Like, I was standing there, it was. It was the weekend, but I was still, like, I had my laptop out and I was kind of noodling around with ideas and. And I was like, oh, this will probably be a good thing for us to do next year. I can see how this might help people. And. And it's. It's an interesting decision because you have to do new enough that the podcast is still new, but core enough that it still does the thing it's supposed to do. Like, Right. So it's. And then you. I don't know. That's more the management stuff and the ideas and the directions. We talk about things and then you gotta keep digging and having conversations with people so you can have these conversations like this.
B
Yeah. No, And I think it's a perfect mix.
A
Yeah.
B
Try to have something management style in there. And it's a lot.
A
It can be a lot if it's too much. You know what I mean? Yeah. You want enough, but it can't be the whole thing.
B
And I think you're right. And that's why people keep coming back, because it would. It would be very boring if we were just like. If you were just getting on and you were a talking head. About what? About anything really, but especially about diabetes management. I mean, what could be more boring than that?
A
I know, right?
B
That people learn through storytelling. For sure.
A
I think the same thing. I'm like, God, if this was just content like that altogether, I'd be like, oh, like just. I would do anything not to listen to it, you know?
B
But I have to tell you, I think it was one of your real early episodes. And I think you already know this, but it's about, like, get. Achieving a steady, low blood. Not low, but healthy blood sugar overnight back in the very beginning. And I just. That was like, really eye opening for me. And I think that's what kept me coming back was that particular episode.
A
Something was helpful and made sense and worked. Yeah, No, I. Glad I did. Listen, I'll tell you right now, I did the whole talk on Saturday just from the bones of the Small Sip series.
B
Oh. Yeah.
A
I just. Yeah, I just literally just followed those however many it is, like, and the nutrition ones.
B
And I feel like I think of Jenny every time I pour myself a gigantic bowl of cereal. Like, don't do this.
A
I've had thoughts where I've done something, and I thought, oh, Jenny would be mad if I. If she saw this. And she wouldn't, by the way. She's not judgmental. She wouldn't be mad. She'd. You know, she'd be disappointed.
B
She wouldn't do it herself.
A
Yeah, no, you know, you're right again, she wouldn't be disappointed in you. She would. It is not a thing she would do. Like, it is a what would you Jenny do? Situation, because Jenny would not eat that. And. And it's, you know, like, if you use her as a barometer on the one side and you come anywhere near her way of eating, I think that ends up being, you know, healthier for the. For the person who's thinking that way. So she'd be thrilled to know that you're. That you're. That she's your. She's your little guilt idol when you're making cereal.
B
Yeah, the little angel on my shoulder.
A
Yeah, hopefully. Right. Oh, that's all.
B
And I do have a better answer for you. I think about. About what. What I could give that. That. That, you know, similar to the kind of thing that I've received. Like, what can people listening get from me? And even though it sort of might seem like we just went through, like, a whack, a mole like, list of all of my health conditions, what I ended up doing after I got the diabetes diagnosis, after I'd been to see so many doctors, is I. Do you. Did you watch Game of Thrones?
A
I. Listen, I did, but I wanted you to know that I don't remember anybody's name or much of the story.
B
Well, there's a character, Aria. She's like the little girl.
A
The stabby girl. She's the stabby girl.
B
She makes a list.
A
Uh. Oh.
B
And I was like, I am like, arya, I am making a list, and I am going around. And I did. I went around to each one of those practitioners, and I told them exactly what they did that wronged me. So, no, I didn't kill them.
A
You didn't stab them with a small knife.
B
But. But I did. I went and I was like, this is the way. This is what happened. And I wanted to let you know that this was my experience and that, you know, it had a negative impact on my health and that I went for six months with a really high A1C. And I ended up in a hospital for a week. And it. I wanted you to know. And each of them had their reaction, and now I have a new pcp, a new endocrinologist, a new eye doctor. So I made my list, and I went. And, you know, I didn't want to just ghost them. I wanted to tell them what happened.
A
Were any of them contrite or apologetic, or do you feel like it helped them?
B
Yeah, they really were. They all reacted like you would hope that a human being would. Um, they apologized, and. But I was still done with them. I thought maybe if they reacted in a way that I approved of, that I would continue seeing them, but that apparently wasn't the case. I just thought it felt.
A
Did it feel like they cheated on you? Well, or on your. On your. On your. Cheated on your. Your trust?
B
Yeah, I mean, they definitely did. And, you know, the pcp, even after all of the stuff with the diabetes, I called her and said, hey, I'm having these crazy heavy periods. And she was like, oh, that's. That's perimenopause. And meanwhile, it ends up with me becoming, you know, low iron, low ferritin, and feeling like I was gonna die and another hospitalization. So I just. You know, you. You. And I think everyone who listens to the podcast already knows this, but you. You do have to advocate for yourself, and sometimes that means finding a new provider. Yeah, I know that seems like a small thing. It might be obvious, but you don't have to continue going back to someone who makes you feel stupid or unheard or unseen or. And is impatient with you. You don't have to do that. There are nice people out there, too, who are practitioners.
A
Well, I appreciate that. Can I try real hard to do something that I know won't work, but I just. Every time I look at my wife, I want so badly for this to be the answer. Can I try it on you? Okay, please calm down. Thank you. Can you just relax and chill out? Is that a possibility or no?
B
I'm sorry. Did you just tell me to calm down? How dare you?
A
Did it not work? Did it not work, Aaron? I'm sorry. I tried my hardest. Oh, my gosh. I do wonder why. Like, that kind of.
B
The list. What was it?
A
Yeah, I made a list, and I went around and I went and made a list of everyone that wronged me, and I spent three years making sure they all knew My heart's exploded twice.
B
And there's smoke coming out of my ear.
A
There's smoke? Yes. I'm Literally, my brain is on fire. I'm just, I can't tell you how angry I am about everything.
B
Did I mention I'm Irish? It's awesome. Oh my gosh. Yes. Which actually reminds me of. Yeah, the Pog. Another episode that you did with someone who kept saying she was Irish Catholic. You're like, yeah, I know.
A
I can hear it. Yeah.
B
Yeah.
A
Everything you said has told me that already. How did your, what, what happened to your husband? Did he, did he get thrown out of the tribe and he had to go get an Irish girl or what happened?
B
I mean, he's always said that I've looked Jewish so he thought I would fit right in. But yeah, he's, he was raised in Maryland, very Jewish family, involved with, you know, we had a bar mitzvah and everything and we, we ended up raising the kids Jewish and I'm down with it.
A
Yeah. You know, do you have like little red haired Jewish boys or is it not that.
B
No, they have like light brown hair and they are. I don't know how the two of us ended up with such good looking kids, but we did.
A
Sorry. Listen, I'm not going to lie to you. There are times when my kids were growing up and they were like, you know, running across a giant piece of ground and catching something and I was like, oh, those are definitely not my kids. Like, I'd look at my wife like, she 100 cheated on me and I, you know, I'd like look to see if the mailman looked super athletic or something like that and. But she said she always felt the same way too.
B
Yeah, it's amazing.
A
Yeah, I, I have to, I, this will sound terrible too, but my kids are also more attractive than they should be.
B
That's what I'm saying, man.
A
I'm like, I don't know what. You guys got so lucky.
B
I know. My older son is like, he's like a physical specimen too. He does powerlifting and he's really into like protein, et cetera. He's kind of a gym bro.
A
You just like, how did this happen? Yeah, no, I know. I stared at that rowing machine for 30 minutes this morning before I decided not to row. So I could have done it twice in the amount of time. I only wanted to come on for 15 minutes. Like, I literally could have done it twice the amount of time that it took you to.
B
If you can't multitask.
A
Yeah, I think I'd be a horrible. Yeah, I think I'd be a horrible day trader. You know what I mean? Like, I'd Be like, I think I just have to jump in here and jump out there. And I'd be like, ah. And I would stare at it till it was over. So. Nevertheless, you were fantastic. I really do appreciate you doing this. Thank you. We are 100% calling this episode some. Oh, you know what we should do? I said we should call it Gesundheit. But, like, what's the Yiddish term for.
B
You do know more Yiddish than me, I do think.
A
Yeah. Well, where did you grow up?
B
Pittsburgh.
A
Yeah. It's a little too west for you to get what I got. So I guess that, you know, what if I make it that no one's going to listen, I might go with Gesundheit.
B
We're just Lheim. I don't know.
A
I just. Well, listen, I wish you a ton of success. I'm proud of you for, like, looking into all of your. Your elements and. And coming up with so many answers. It really is impressive. I hope you find some energy and go after your graves thing and. And. And see about that. You know, good luck getting your fan up a little higher. I think that would definitely. Probably help you a little bit. When's the last time you had a. An infusion?
B
Last. Last year, I think towards the end of the year. So it's. Yeah, it's been about a year, I think.
A
And I would imagine if they checked it before and after. Right.
B
Uh, they did. And I have my appointment coming up in March, so.
A
So if it's still going back down, then you need to figure out why, obviously. But if you can't figure out why, then you need to get. You need to get on a schedule, because if it's going to go up and then come down naturally. I'm going to use the word naturally. Then you need to get an infusion before you bottom out.
B
Yeah. And I. I think that with getting checked every three months, I. I think that. I think I'll catch it.
A
Yeah. Yeah.
B
And then I'll see him in March, and it'll be.
A
Do it again.
B
It'll be good. I'm going to retest in January.
A
Awesome.
B
And then he'll test me again when I go in for the merch appointment. If it's low in January, I'll call him.
A
Yeah.
B
Or send a message or whatever.
A
Well, the next time someone in my life doesn't listen to me, which should be in the next 35 minutes, I assume I'm gonna say, you know, Aaron listened and she's doing better. You guys. You guys could try listening.
B
They're gonna be like, who the Is Aaron?
A
Well, that's their problem. They should know. You.
B
One of your stupid.
A
Is that one of the podcast people? Yeah, the podcast people. That's my son's phrase. Podcast people. One of these podcast people is gonna murder you one day. That's his favorite thing. And we did. We did have this. We did all go on vacationary. Not. Not recently. This summer. We went away for a week, and we were all walking, like. I don't know, we were, like, walking through a town, and we got to a traffic light, and we're waiting at the light to cross, and someone yells our name out, and we are, like, across the country, you know?
B
Wow.
A
And it just turned out to be people who literally live two blocks from here who were on vacation at the same time.
B
Oh, that's funny.
A
Which is bizarre enough. But as, like, you know, we had our pleasantries. It was really cool to see them. We said hi for a little bit, and we walk away, and we get across the street, And Cole goes, I 100 thought that was one of your podcast people and that we were dead. He's like, I literally felt myself making a fist. And I was like, what did you think? I said, what do you think's gonna happen? They're lovely people. And he goes, no, they're not.
B
I mean, I'm telling you, going on a cruise, that's like, you're setting yourself up for.
A
No, everybody was so awesome.
B
It's a murder mystery.
A
Yeah. Every. Yeah, it'll be only murderers in the building on a boat, but no, everyone. Boy, everyone on that cruise was so lovely. Like, it's funny, when you brought it up just now, it made me think, like, oh, I can't wait for the next time we do it. It's going to be. Is going to be awesome. I had such. Such a. A wonderful time with all of them. I hope that they did as well, but I actually. I know they did, but that's not the point. The point is, is, like, it was lovely. Like, it really was lovely to be around people. I couldn't. I could, with 100% honesty, tell you that there was not one person on that cruise with me that I looked at and thought, oh, God, nobody gave you the creeps. No, I. Yeah, like, I did. And everyone was just really wonderful. It was awesome.
B
So, anyway, now it does. It does sound. It's. What an opportunity for. For you and for that and for the attendees. That would be. That would be really.
A
Yeah.
B
Neat.
A
Listen, also, tell your husband I said you're welcome because it sounds like I've done a lot of things that he's benefiting from as well. Head now to tandem diabetes.com juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're going to find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem MOBI system. The podcast episode that you just enjoyed was sponsored by Eversense CGM. They make the Eversense 365. That thing lasts a whole year. One insertion every year. Come on, everybody. You probably feel like I'm messing with you, but I'm not. Eversensecgm.com Juicebox the conversation you just heard was sponsored by Touched by Type 1. Check them out please@touchedbytype1.org on Instagram and Facebook. You're gonna love them. I love them. They're helping so many people@touchedbytype1.org I created the Diabetes Variables series because I know that in type 1 diabetes management, the little things aren't that little and they really add up. In this series, we'll break down everyday factors like stress, sleep, exercise, and those other variables that impact your day more than you might think. Jenny Smith and I are going to get straight to the point with practical advice that you can trust. So check out the Diabetes Variable series in your podcast player or@juiceboxpodcast.com.
Episode #1737: Gesundheit
Host: Scott Benner
Guest: Erin
Date: January 14, 2026
In this candid, wide-ranging episode, Scott Benner interviews Erin, a 50-year-old woman diagnosed with type 1 diabetes at age 45. The conversation centers on Erin’s journey through a remarkable number of autoimmune and health challenges, her struggles and mistakes in the healthcare system, her approaches to self-advocacy, and how the Juicebox Podcast community and resources have helped her gain control over her diabetes and overall well-being. Blending humor, warmth, and some blunt honesty, this episode throws out fear in favor of actionable strategies, while also giving space to the emotional and psychological toll of chronic illness.
(Timestamp: 02:31–08:00)
"It's my fault. So I can't blame my husband or my kids. … There would be hell to pay. Yes. Yep." — Erin [04:39]
(Timestamp: 12:12–17:34)
"You got your first autoimmune disorder when you were 12. It tried to kill you through your lady bits, but you fought back." — Scott [13:22]
"They took the spleen out because … if you remove it, your platelets don't get filtered out. That's the simple way the doctor explained it." — Erin [16:36]
(Timestamp: 18:09–21:00; 19:22—24:09)
"I told the endocrinologist I think I have diabetes. … He sent me for bloodwork and said come back in four months." — Erin [22:29]
"You have three stories and nobody stood up in any of these stories and done the right thing." — Scott [24:09]
(Timestamp: 24:26–50:00)
"I love when you have the experts on… but the regular conversations that you're having with regular people, too, they're just fascinating. Just love it." — Erin [63:33]
"How many years later killed your dog?" — Scott
"It was in 2022. … I was so grief stricken … I had another spontaneous coronary artery dissection a few days after we had to put him to sleep." — Erin [29:49, 30:57]
(Timestamp: 51:00–52:42)
"Your talking to you is like the pinnacle of having a conversation with someone about type one who really gets it … That need to have understanding, to have community, just to talk to anyone, someone please understand." — Erin [51:24]
"Listening to your podcast is sort of the same as setting a lower target from my Dexcom … It just keeps me more cognizant of what I'm doing. … When I take breaks from the podcast… my A1C goes up." — Erin [61:28]
(Timestamp: 69:53–72:18)
"I am making a list, and I am going around. … I told them exactly what they did that wronged me. … And each of them had their reaction, and now I have a new PCP, a new endocrinologist, a new eye doctor." — Erin [69:53–70:58]
The episode balances laugh-out-loud moments with hard-earned lessons about the complexity of living with multiple autoimmune diseases, the shortcomings of health systems, and the necessity of community for both information and emotional resilience. Erin’s willingness to share both her struggles and strategies offers hope and camaraderie to every listener navigating diabetes or chronic illness.
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