#1904 I Killed My Own Pancreas
I Killed My Own Pancreas
Kaitlyn was diagnosed with type 1 at ten; a year later she’s running most of her own care with an A1C in the fives. She and her mom Jen share how they got there — calm, informed, and steady.
Jump to a moment
- A year in, an 11-year-old is running most of her own care — and thriving. Kaitlyn does about 95% of her management at school, sits at an A1C in the fives (Jen cited a printed report around 93% time in range), and her mindset is simply: “I don’t fight my diabetes.”
- Type 1 can hide behind “normal.” Kaitlyn was active and seemed like herself for months — a slightly loose cheer uniform, more thirst, vague stomachaches — while her blood sugar climbed to 575 and her A1C to 14.7. Jen’s “mom gut” and a Google search (excessive thirst, weight loss, headaches) are what finally got them to the pediatrician.
- Knowledge lowered the fear. Jen — an architect and self-described type A planner — leaned on the Bold Beginnings and Pro Tips series during her commute, then relayed the key ideas to Kaitlyn and her husband. Her takeaway: you can’t control type 1, but you can manage it with tools, awareness, and a plan.
- Tight ranges and early corrections were a choice they made together. They correct sooner than their endo suggests, keep alarms tight, and treat lows small — “rather treat a low than fight a high.” Their care team has been supportive and even curious about what’s working for them.
- Calm is a skill, not a personality. Jen still gets up at night and manages her own health (PCOS, a clotting disorder, perimenopause), but her comfort comes from preparation — a stocked supply bag, a travel basal profile, community connections. A steady, prepared parent gave Kaitlyn room to feel capable rather than afraid.
- Bold Beginnings Series — for the newly diagnosed, with Jenny Smith; where Jen started (verify slug)
- Pro Tips Series — the management fundamentals Jen relistened to and “really clicked” (verify slug)
- juiceboxpodcast.com/clinician-share — a page for doctors to easily print, copy, text, or email the series to patients
- Tandem Mobi & t:slim (Control IQ+) — Kaitlyn uses the t:slim; sponsor link
- Dexcom G7 — the CGM Kaitlyn wears on her arm; sponsor link
- Friends for Life (Children with Diabetes) — the Orlando conference they hoped to catch (verify URL)
- Juicebox Podcast Facebook Group — 74,000+ members talking type 1 (verify URL)
Every word of the conversation
Meet Kaitlyn and Jen0:00
Welcome back, friends, to another episode of the Juice Box podcast. Please don't forget 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 becoming bold with insulin. If you or a loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the bold beginnings series on the juice box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five years of personal insight into type one.
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 one. You can start your journey informed and empowered with the Juice Box podcast. The bold beginning series and all of the collection in the Juice Box podcast are available in your audio app and at juiceboxpodcast.com in the menu. This episode is sponsored by the Tandem Mobi system, which is powered by Tandem's newest algorithm, Control IQ Plus technology.
Tandem Moby has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox. The episode you're about to enjoy was brought to you by Dexcom, the Dexcom g seven, the same CGM that my daughter wears. You can learn more and get started today at my link, dexcom.com/juicebox.
Hi. I'm Kaitlyn, and I was diagnosed with type one diabetes a little bit over a year ago.
Kaitlyn, how old are you?
I'm 11.
11. Who are we allowing to talk with us today besides you and I?
My mom.
Your mom. Hey, mom. What's your name?
Hi. I'm Jen. I'm the mom of Kaitlyn, my new relatively newly diagnosed t one d, and I also have a son who's a few years older Okay. Who is not t one d.
Who's not. And so alright. So a year ago.
March 2025.
Are there other people, Jen, in
your family who have type one diabetes or other autoimmune issues?
A Family Full of Autoimmune2:48
Yeah. So my aunt was actually diagnosed late about fifteen years ago when she was 60. Interestingly enough, I knew she had diabetes, but I had no idea what it was, what type it was. She's very private about it.
Mhmm.
So not until we were in the hospital didn't it come to light that that's actually the same as what she had.
I just wanna take this moment, Jen, to let the universe know that if I get something like that when I'm 60, I'm gonna be extra mad. I I I just because by 60, I'm gonna think, didn't I make it? You know what I mean? You know?
Right. Yeah. I'm retired. I almost retired.
Right. Right. Right.
We let's go.
Leave me alone. I'm out of this now. Right. But you said she kept it pretty private.
She kept it pretty private. She still does. We do talk occasionally. But she also has thyroid issues. My uncle, her brother, also has pancreatitis.
Mhmm.
And then I have PCOS, Raynaud's, and antiphospholipid syndrome, blood clotting disorder.
Oh my gosh.
Which I believe is also autoimmune. I was googling it last night.
Yeah. Can I guess? Is that your mother's side?
Mhmm.
Mhmm. Mhmm. Mhmm.
Okay. Yep.
Oh, and then you made a couple babies. One of them is named Kate. But then Kate, you said you were gonna be called Kate, but then you introduced yourself as Kaitlyn. It's your last chance. What do want me to call you?
Kate. Kate. Alright, Kate. Tell me what you remember about diabetes when it started.
Chugging Water, Losing Weight4:22
So I was, like, chugging water, and I was, like, eating way more, but I also lost, like, 30 pounds
Oh gosh.
When I was diagnosed. And I remember being in the hospital and, like, eating it and being hooked up to, like, IVs and not really understanding what was happening.
Yeah. No. I I bet. How long were you drinking that water for? Before they took you to the hospital.
Do you know how long that was going on?
Five months.
You think it was months? Yeah. Jen, is that about your remembrance?
Yeah. Looking back, I would say noticeably a couple months because I remember Christmas, we got her a larger Stanley to be able to bring more water to school because she was just drinking so much. And we got a blue light blocking glasses because she was having headaches, and I couldn't figure out why.
Okay.
And that was Christmas. So from Christmas to March. So, yeah, a couple months. But even looking back, I think I started seeing signs even in November.
Okay. Kate, you got blue light blocking glasses and a better jug of water when when it looked like you had diabetes. That wasn't helping at all, was it? Nope. No?
So do you go to your mom and say you're not feeling well? Mom, do you guys start noticing things? Like, how do you think the I I guess, walk through the progression of the first time you thought, that's weird, till you got to medical help?
So I I think I started really thinking that's weird in, like, January. But looking back, so she had started cheer or she had been doing cheer that fall.
Mhmm.
And I remember in November at a competition looking being like, oh, her uniform's a little loose. I wonder if she had a growth spurt. And she was starting to have drink a little bit more then and eat a little bit more, saying her stomach was off. And I'm like, okay. Is this growing?
Is it you know, what what's going on? Is it a like, because she was doing the stomachache stuff. And I'm like, well, you know, are we starting to look at different foods? You know, I try to track at the dairy that's bothering her or gluten, and I wasn't coming up with anything. And then I as I told you at Christmas.
But then January, February, she kept losing weight, and it didn't it didn't make sense. And then one day, she got on the scale, and it was it was pretty close to thirty pounds. And I was like, oh, okay. Something's not right here at all. And then I just googled it.
And I would say it was probably mid February I googled it.
Doctor Google Says Diabetes6:43
And I was like, well, that doesn't make sense.
I can't be diabetes.
That you got diabetes when you googled.
I googled excessive weight, headaches, excessive weight loss, drinking, headaches, and stomachache.
Okay.
Those seem to be, like, the major by February, those were what I was saying were, like, okay. Major things. And then it did come back diabetes. And, of course, it came back with, like, 10 other things as well. But diabetes was the one that was kept coming up more and more.
And I remember talking to my husband about it, and both of us were just like,
that doesn't make any sense.
Mhmm.
It can't be. And and you kinda talk yourself out of it. Yeah. Like, ugh. Because she was still fine.
She was still active. You know, she was still not wanting to go to bed at night. She was still not wanting to get out of bed in the morning. Like, a lot of things didn't change. So it was really easy to be like, oh, that's just weird.
Well, let's just keep an eye on it.
I see.
And then and then I and then I was like it was probably another week or two, and I'm like, this it's just that mom gut. I was like, something isn't right. And so I that's when I reached out by like, through MyChart portal to a pediatrician, and I I didn't let on what I thought it was because I was starting at that point to really think maybe it was diabetes, but also had no idea how critical the timing could be.
I see.
Right? Like Yeah. I didn't realize that we could be within days of, you know, bigger issues. And so I reached out and said all the symptoms, and they immediately called me. And they started questioning how's she acting?
How's she feeling? I'm like, she's fine. And they're like, okay. Well, we wanted to go get some blood work done. And we were just really busy that time of year, and and I was, like, trying to get my son off to a camp.
And I was like, well, can we go this was, like, Thursday. I'm like, can we go Saturday morning? And I'm like, yeah. That's fine. Unless you notice any big changes between now and then.
So it was even a couple days before we went to get the blood test because I think because she was still acting
Okay.
Kinda like herself.
Yeah. Yeah. It sounds like they handled it pretty well, actually. And and Yeah. You can I ask that during this time, the googling and the wandering and googling again, is Kate involved in this, or is this a thing your husband and you were privately doing?
She was involved, I think, in more of the conversations of like, how do you feel? You know, did you eat something that was making your belly feel off? Did you you know, how much did you drink today? But she she wasn't involved in any conversation of this Google's coming back as diabetes.
Yeah. And Kate Kate So I know this is a weird question because you were, what, nine when that happened? But
10. 10.
10. 10. Yep. And when
it happened? Okay. Like, it's a weird question because you're younger, and you're probably not accustomed to this. But did you ever, like, look at your mom and dad and say, I don't think you're right, or this is serious? Or did you feel like did you feel like, oh, they're taking care of it and it'll be okay?
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No. Some of the stomachaches, I was like, it's not I'm not exaggerating, mom. Because, like, mom thought it was just me progressing. Think of, like, I'm not exaggerating. My stomach actually hurt.
It really hurts. And and compared to other stomachaches that you've had since then or before, was it much worse, or was it pretty pretty much the same as you've always experienced?
Pretty much the same. A little bit worse.
A little bit worse. Okay. So nothing that would make anybody go, Okay. So I guess that blood work got you there. Right?
What was her let's see. From your description, months, she was still moving, her blood sugar was can I guess? Do you know what her blood sugar was?
575, and a Bone-Cancer Scare12:59
So on that this is a funny story with that. So, yes, we found out her blood sugar was five seventy five when she was tested.
Yeah.
So it was a very long start, I think, knowing that I was when looking back, I think it was, like, November to March. So, yeah, five seventy five. But what happened was so she went in Saturday. Sunday morning, I'm up first, and I start getting the MyChart test results in. And the first thing that comes in is some blood test, and it wasn't sugar.
It wasn't her glucose. It was some blood test, and then then I and it it was, like, flagged abnormal. And so I googled that. Right? Because doctor Google once again.
It's Sunday morning at, like, eight in the morning. I'm like, what the heck is this? And it was basically coming back that either she was dehydrated or she had bone cancer.
Oh.
And I'm like, oh, well, oh, she can't be dehydrated. She's drinking, like, 80 ounces of water a day.
Oh my god, Jen. You thought she had bone cancer from that?
I thought she had bone cancer because how could she possibly be dehydrated? She drank so much water. Right? Like, I didn't
I mean, it's a fair it's a fair thought. Right.
And so I'm like, no. My husband's still sleeping. My son, we're try I'm, like, trying to make plans to pick him up because he was away camping. Kaitlyn's still sleeping. And then so I I go as I'm walking upstairs, I wake up my husband.
I'm like, oh my god. I don't know. Like, this is what it's saying. You know? Then her pediatrician calls.
And now this is, like, 09:00 on a Sunday morning. Mhmm. Her pediatrician calls. And this has been our pediatrician since my son was born, so for thirteen years at this point.
Okay.
And I'm like, this this isn't this isn't good. Like, you don't get a call from the pediatrician Ever. Sunday morning Yeah. Ever.
He's in his pajamas right now, or she?
Right. He he and he's been great. And and so he's like so he told us what her blood sugar was, and then I'm like, oh, well, so on the way to get her blood drawn, my husband stopped and got a refresher and a doughnut for her because she didn't really wanna go get her blood drawn. Like, that's gonna be why. Right?
You know, because again, you just don't know. Yeah. And he's like, yeah. No.
No. That's not how that works. Well and so there you are.
So she
goes on Sunday. You guys go to the hospital, I guess.
Yeah. So he was he was good. He was so we're in Massachusetts. He's like, you can either go to UMass, which is in Worcester, which has a pediatric ER and a pediatric endocrinology team, or you can go into Boston to, I think he said, Boston Children's. And I said, well, UMass pediatric ER.
I've been I've been there before for other things with kids. So I'm like, let's just go there. And he's like, you're probably gonna wanna pack a bag. I you know, we explained, I think this is type one diabetes. They're gonna confirm it there.
If it is, you're gonna stay you're like, we're gonna stay overnight a couple nights, so you probably wanna pack a bag. But I didn't wanna worry her, Kaitlyn, like Yeah. That we're potentially going for days. So I said, let's pack a let's pack a day bag. Let's pack, like, an ER bag with some snacks and its phone chargers and some stuff to do, And we'll pack our overnight bags just in case we have to stay, you know, and then we'll be up to daddy to decide what we're gonna wear.
And so she was on board with that. So we each packed overnight bags and left them, figuring that if we were gonna stay, Chad, my husband, her dad was gonna come in and, know, with us.
Did did you guys tell her at that point that that you thought she had type one?
Telling Kate16:34
Yay. We did? Mhmm. I remember sitting at the kitchen table crying.
Wow. Jeez. And so was it was it Kate, what's the word I'm looking for? Was it hectic? Like, were your parents, like, flipping out a little bit, or were they calm?
How do you remember that?
They were kinda calm, but they didn't know which was worse. So, like, my breakfast that day, I hadn't had breakfast yet because it was, like
Bizarre.
Eight in the morning on a Saturday. So they're like, this thing has more carbs, but this thing has more sugar. Which one do I give her?
That's what you remember them saying?
Uh-huh.
Yeah. Started right away, Jen?
Honestly, I I don't remember that. So I'm I'm I'm a type a planner. She's she's actually my mini me. But I immediately whenever anything comes up, I just go into, like, plan mode, what we were gonna pack, who was gonna get, you know, our son from scouts, and how you like. It's kinda how I cope.
But Mhmm.
I so I don't even remember that in my interaction.
I was, like
Well, you
know immediately, like, trying to figure out, like, what we needed to bring and what we needed to do and Yeah. Who was gonna go where. And
Well, we move forward, I think we have to acknowledge that people make fun of it all the time, but Google did a really good job for you.
They did do it did do a really except for the bone cancer part, but
Oh, still.
It did do a really good job because, you know but it it still I think I not having anyone that we knew at that point, we didn't know to take to get moving on it. You know what I mean? Like, we could've gotten diagnosed even earlier if, like, we've moved on it. And we're fortunate she was not in DKA. Her a one c was 14.7.
So that also kinda shows that it had been going on
for a Yeah.
I'm I'm actually really grateful she was only five seventy five.
Actually, I realized I I was guessing in my mind in my mind, I was talking to myself. And I I thought she's probably in the mid fives. And I should have said it out loud because now nobody will believe me that I was close. But I it might be a new game on the podcast where I start guessing people's blood sugars at diagnosis. I'll I'll think about that.
There you go. Yeah. Based on their description of how they work.
Well, yeah. I just I realized as you were talking, I was like, oh, she's probably that long. Just you know, you were talking about how she felt, but how she was. And I was like, yeah. It's probably in the mid fives.
And, nevertheless, another skill I'll have nothing I can ever do with. So so, Kate, you didn't like the hospital. Right?
I hated it.
Hated it. You hated it because it was scary, unknown, boring, all the above. What did you not like about it?
All the above and, like, they just kept poking me with needles.
Mhmm. Yeah. That's not easy to like, don't think. How do you do with your needles now, Kate? Like, with I'm assuming you have a pump maybe?
Yeah. I have the t slim.
Okay. How do you deal with putting in your infusion sets, things like that?
Like, it's pretty good. Sometimes it hurts. Like, last night, I had to do a site change, but I had to take out the one we just put in because it hurts so bad.
Oh, well, it sucks. Do you do you how do you deal with it when it hurts? Do you say a bad word? Do you flinch, cry, hold somebody's hand? What do you do?
Like, cry.
Cry? Yeah. I would too. I just want you to know. And then last night, one went in and it hurt so badly.
What do do? You go to your mom and say, hey. This has gotta come out?
I after my dad put it in, I'm like, dad, get it out. I don't it hurts really bad.
Okay. And do they sometimes hurt and then stop hurting? Or if it hurts, you know it's gonna be like that?
If it hurts for, like, over forty five seconds, then I know it's gonna hurt Okay. For the rest of the time. But if it only hurts for, like, twenty seconds, then it's less and less and less.
Yeah. Do people help you with these things right now, Kate? Are you putting them by yourself or somebody helping you?
I can do, like, all this stuff.
Okay. That's cool.
And, like but I can't put it in by myself.
I see. Now when you get out of the hospital, are you feeling better, or does it take time for you to feel better?
I was feeling better after I got out of the hospital. I did my first finger stick, like, five days out of the hospital.
Mhmm.
And I did my first insulin injection, like, two months out of the hospital.
Two months out. Can you tell me a little bit about what that's like to be told that, like, forget everything else. Just you're gonna have insulin that's gonna go in through a needle. Maybe you'll get a pump one day. This is gonna be, you know, every day.
And is there do you have internal thoughts about that? Do you have thoughts that you share with your parents? Like, I'm looking for how it really made you feel.
The Diabetes-Alert Cat21:38
No. But my cat was like, she can tell when I'm low and when I'm high.
Wait. You have a you have a diabetes alert cat?
Basically. She's 18, and she's being very annoying right now. She's on my lap and trying to scratch her face on the computer. No. You want
me to come get her out of your room, honey? Yes.
But, like, one time, I was going low, and I didn't know I was going low because my Dexcom was, like, not saying I was low.
Mhmm.
And my cat came down, and she, like, sat on one of the kitchen table chairs next to me while I finger stuck. And I finger stuck, and I was slow.
Oh, wow. And and the does she do that all the time, or was that one time it did happen?
Yeah. Most of the time, she'll, like if I'm high, she'll just sit on my nightstand, like, crying until someone comes in and, like, finger sticks me and tells her, like, I'm okay.
Oh, wow. That's pretty cool. That's really, really cool. You didn't teach her any of that. Right?
Or you just talk to her, let her know what's going on? How does it work?
I didn't, like, teach her anything. She just one day
Start doing it.
And was, like, crying at me. I'm like, what? And my finger stuck. And I was, like, in the seventies, like, low seventies.
No kidding. But go so going back though to, you know, being told the or I guess coming to the understanding that you're gonna do these shots every day, there's gonna be multiple ones. You don't feel a certain way about it. You just do it because that's what's supposed to happen?
Yeah.
Okay. And have you had thoughts about it since then, or is it just kind of turned into, like, how things go when it feels very common to you now?
Yeah. It just turned into thing how it goes.
Okay. How about with your friends at school? Are people aware that you have diabetes? Is a thing you share?
My Pancreas Rage Quit23:38
Yes. Like, on the second day of school, I did, like, a thirty, forty five minute long presentation to my class about type one diabetes, why I have a phone and my pump and why I'm gonna beep and everything. And I use the term my pancreas rage quit on me.
It rage quit?
Yeah. And that's how they understand.
But what's the thing what's the thing that people were saying last year, Jen? Quiet quitting? People just weren't showing up to work anymore?
Yeah.
Yep. Yeah. That's it sounds like that. Yeah. So far but hers just got mad and left all at once.
Yep. Yeah. She's wearing a shirt right now. What does it say, Kate?
Don't mess with me. I killed my own pancreas.
That's very funny. So you've shared it with your friends. You're comfortable with it. And have you, like, come a long way? And how did you, like, how did you get where you you have come a long way.
But, like, how have you gotten here? How do you learn things? How do you get prepared to count carbs to make this part of your life?
I just I don't fight it. I don't fight my diabetes. I don't say, I'm not doing that. I don't wanna do that. And, like, it helps that my friends know what it is.
Like, my best friend that I've known for, like, three years knows what a glycemic index is.
That's nice. That's very nice. How did you know not to fight it? Is that something that someone taught you, or is it something you came up with on your own?
Something I came up with on my own. I just knew I had to do it to keep myself alive. So
Yeah. Have you had that thought about other things in your life? Have you ever been like, I have to go to bed now. I shouldn't fight it.
No.
No. That you fight?
Yes.
Yeah. Every night.
Yeah. Because if you go to sleep then you might miss something. Right?
Yeah.
Yeah. Do you ever miss anything? Like, when you stay up, you're like, oh, I'm so happy I stayed up. This is way better than going to sleep.
Only on New Year's Eve.
Three hundred and sixty five days a year and only one day is worth staying up for?
Yeah.
Yeah. I agree with that. It turns out getting good sleep is good for you. Makes the day better. Right?
Yeah.
The Great Bedtime Debate25:58
Yeah. But you still your mom's like, it's time to go to bed, you say, I don't want to. What time is she trying to make you go to bed, Jill? What time are making this kid go to bed?
So I try for eight. I'd be happy at 08:30, but we typically leave her room after nine, 09:15.
Eight. What do you where'd you say you live? You're on the East Coast. You're trying to make that kid go to bed at 08:00? Yeah.
Kate, I'll fix this for you.
Hold on second.
Well, she has to get up at 06:15 in the morning. Yeah.
But that's ten hours of sleep.
Yeah. She's
eleven. Ask her how
well she gets at wait. Ask her how well she gets out of bed and how refreshed she is in the morning.
Well, no. Of course not. Because nobody wants to get up at 06:00 in the morning. Doesn't matter if you've been sleeping for three days. Who's doing that?
Hey. What time would you like to go to bed?
09:30.
Alright.
09:45.
09:45. Wow. But it's not tied to tell you you know, all this when I was a kid, Kate, I'm very old, but when I was a kid, all this was tied to television. Like, you wanted to stay up to watch something on TV, but that doesn't matter anymore. So what are you doing when you stay up?
Like, calling and texting my friends and watching movies.
Oh, I see. And your brother is older. You just say brother. Right?
Yeah.
Yeah. Does he stay up later?
Usually, I'm up later than he is.
Oh, he's what they call lightweight. He can't hang. Right? He gets sleepy?
He just, like, goes to bed. And, usually, like, my mom comes out of his room and my dad's still in my room. Or if my dad comes out of his room, my mom's still in my room
Okay. And still up. Hey. Okay. Wait a second.
When I I really I'm a little stuck on this, Kate. Like, so you wanna stay up, but you wanna stay up and talk to your friends. That means your friends are awake too.
Yes.
And then you sleep still, like, what, eight hours?
Yeah.
But then why can't you get up?
I don't know. I have, like, four alarms set, and I still barely wake up.
We joke with Arden because she has alarms on her phone. You know how people settle do you have alarms on your phone? K.
I have two alarms set on my alarm clock and, like, two alarms set on my phone.
I think Arden has an alarm every fifteen minutes on her phone from 6AM till two in the afternoon. It's sometimes sometimes she's dressed and moving around the house, like, leaving for a class, and her alarm goes off. And I'm like, time to get up. And she goes, that's my alarm for time to leave, not time to get up. And I go, okay.
I don't believe you, but okay. Those alarms go off so much sometimes, and they don't wake you up. Right? No. Your mom's gonna come get you.
Yes.
Yeah. Yeah. And and let me ask you a question. Be honest, Katie. If you went to sleep at 08:00, you think you'd pop out of bed at six like, whoo.
Let's go? Nope. No way. Okay. I'll see.
There you go, Jen. Let her stay up. What's the difference?
That's nice. She's like, thanks.
No. Look. I I should tell you to listen to your mom. She has your best interest at heart. Okay?
And who knows? Maybe she's right. And what are you talking about with your friends anyway? What's so interesting? What's going on?
Are you talking about other people? Boys? School? What are you talking about?
My best friend and I argue over this one stupid thing about who loves each other more. Like, I tell her, it takes, like, five minutes to settle that we love each other equally.
Mhmm. But you gotta do it every day? You can't just remember?
Yeah. We have to do it every day.
I see. Well, how are gonna make her not do that, Jen? That seems heartless of you. So what do you do for your diabetes in before bed? Is there anything you'd have to do?
You know, do you take a snack? Do you stay nice and stable because you're you're moby? Like, how does that work? How does sleeping go?
I used to when I was just diagnosed, I used to try and get bed at 01:50.
Mhmm.
That'll be, like, one hundred and be, perfect. I'm ready to go to bed.
Nice. Do you get low overnight ever?
Not really anymore.
Oh, and when it does happen, how does it get handled? Who does mom come in like super girl?
Uh-huh. Yeah. Is sugar picked until, like, finger stick me? But, like, I'm half asleep. I don't know what I'm talking about.
Like, I'm not really conscious. Like, my eyes are open and I'll be talking. But she'll be like, you were talking about something last night. I'll be like, no. I wasn't.
Yeah. I Arden's I was asleep. Bananas in her sleep and not remembered it the next day. You think you could eat a banana while you were sleeping?
I was drinking a juice box while I was sleeping.
I bet you could, actually. Hey. This is, what they call apropos of nothing, but the new Sugar Pixel will have a cartoon representation of me as a pirate on it in case you're interested.
Yeah. We actually ordered that one. It should be we ordered it after your that last
launch Oh, did you really? Oh, that's
so cool. Well, we have so we have three right now all over the house, but we have a camper. So when they started talking about the new one being able to connect easier or connect when you're, like, in a hotel or camping, I was like, bye.
Oh, you got That's awesome. Yeah. Oh, oh, that's so cool. It's a very, very handy very handy device. That's for sure.
Okay.
For sure.
Now, Kate, what I I guess I should ask you. If there's another little girl listening, what do you wanna tell her about diabetes?
It Does Get Better31:38
It does get better. Not every day is as bad as you think it's gonna be. Like, the days that you do have sight change or get shots that hurt really bad, there's gonna be a day tomorrow that you'd the shot's not gonna hurt as bad or your sight or you're not gonna have to change your sight.
Yeah. How often do you have days that you feel like they weren't good days?
Like, what so twice a month, maybe.
So not even every site change is a problem?
Yeah.
Okay. How do you like having your CGM, I imagine, on your phone? Is that a thing you enjoy? Do you use it?
Yeah. Do
you use it more to like, I guess I wanna know how involved are you in the management of your insulin. Like, do you use it to keep track of what's going on so decisions can get made? Or you do you use it more like, oh, no. There's an alarm. I have to do something.
At school, I do, like, 95% of my managing. Really, all the school nurses do is if I go really low
Mhmm.
They, like, call my classroom and give me the carbs for my lunch.
Hey. What was your last a one c?
Six point something or 5.9, something like that.
Is that right, John?
Yeah. So we've been since last summer, we've been between five point six and six point two or six point yeah. 6.2, I think.
And you would say that that she's managing most of that?
She at school, she does quite a bit of managing. We do quite a bit of text managing together too. Nice. Her school nurses are awesome. They're really willing to, you know, work with how we wanna manage it.
And from you, we learned, you know, tighter tighter alarms, keep tighter control.
Okay.
She she hates being off at 02:30. So we'll start correcting way earlier than the endo would like us to.
The endo doesn't want you to correct the 200 blood sugar?
They wanna say at go ahead, Kate. They say 300 for three hours, then you can correct.
Boston. Come on. You're right there on the coast to act like it.
Actually, this is with Worcester. But, yeah, they they we we correct when we feel like we need to correct.
Good for you. Hey, Keith.
I remember early on listening to one of your pot very, very early on when we were still trying to, like, get her to bed at 01:50, you had said, like, oh, if you saw Arden's number going, like, 01:30, 01:40 with, like, straight arrow up, you'd start deciding, you know, if you were gonna correct. And I remember, like, this was, like, a weekend, and I heard that. And I was like, that's bonkers. And now I do the same thing.
Hey. Can you say Worcester with the accent for me, Joan?
With the accent?
Yeah.
Worcester.
Thank you. Appreciate it. I feel like I just heard Ben Affleck read the phone book.
Yeah. Well, that's yeah. We could, for sure.
You see it when they did that? Matt and Ben got on some late night show, and they
I did.
Yeah. They read the towns in in in Massachusetts. Very funny.
Yeah.
Okay. So okay. So you're doing a good job. Kate, you're doing now when she when she gets home, does she, like, throw that phone at you? Like, you're on, lady.
And or does she keep doing it?
I think she keeps doing it. It's, you know, it's more of a team effort when she gets home. But, like, we'll often just tell her the carbs, but I I would say 95% of the time, she's the one putting in the information. I may be more than that. She's the one putting information into her pump as to the carbs, whether we're gonna, you know, split, extend, all that stuff.
I mean, the the I the t slim is awesome because she doesn't even have to have her phone on her. She could just pull it out Mhmm. And do it right on the screen. So that that was her choice for a pump, and it's actually worked out really well. And being able to extend, we've really nailed a few of the common foods we eat all the time.
Really? She knows exactly what to do.
What's
the for breakfast, she eats the same thing. So all I have to just double check-in the morning, did you bowl us? She's like, yep. And we don't that's all we talk about.
Yeah. That's awesome. Do you are you happy with the level of interaction you and your mom have over this, Kate? It does it feel like it's too much, or does it feel just right?
It feels just right.
Nice. Why do you think you understand this so well, Kate? Like, how did you how did you I mean, your mom taught it to you, I imagine, or did you figure it out as you were doing it?
Both.
Both. Okay. So you're really paying attention. How do you know to be this, responsible?
I don't know.
Is it just how she is, Jen?
Yeah. She's a really responsible kid. She's like I said, she's my mini me. She's a little type a rule following great kid.
Mhmm. So she just she
and she knows she feels yucky out of the range.
So we don't wanna feel that way, Kate. Is that it?
Yeah.
Yeah. That's great. Good for you.
Does
it ever take you away from things? Do you ever find yourself doing diabetes instead of something else you wanna be doing? And how do you manage that?
I mean, sometimes, but, like, when I'm at birthday parties, I had them on my phone, and I'm like, you're my pancreas for the day. Thanks.
Get going. Yeah. Yeah. Yeah. And that's nice.
That must feel really good that she's there to do that. Right?
Uh-huh. Like, I did a puppy yoga birthday party once, and she was my patriots the entire time.
Nice. Puppy yoga? That sounds nice. Did they smell good like little puppies?
They were really cute. They had, like, puppies and ducks. And
Puppies and ducks? Bunnies. Oh, bunnies. Oh, ducks would be nice too, but okay.
They did have ducks. They had puppies, ducks, and bunnies.
Hey. Hey, Kate. How involved is this Chad guy in all of this? What do
you call him? Involved?
You call him dad, I imagine. Right?
Yeah.
Yeah. Is he does he know about the diabetes too? Does he help you sometimes?
Yeah. He does, like, almost all my site changes. Like, he does, like, the pump site changes, and mom does, like, the Dexcom site changes.
Mhmm. How'd you get the one and not the other
one done?
So we we stumbled probably about four, six months ago onto the soaking concept of the Dexcom. Mhmm. And we just kinda follow a really regular schedule with it. So it gets her grace period starts at, like, seven or eight in the morning when we're getting ready for school. So that's when I put the new one on, and he's already left for work.
K. And so then when she's late afternoon is then when we, you know, get it started up and going. And who who's ever home with her at that point? We'll do that part and and get it rolling on her phone first. Once we're really accurate, like, we're confident that it's pretty close, then we'll change it over on our pump.
Nice. And that we super accurate with that lately. So it's just the timing. Like, we just try to keep it to more of a schedule with it so that we, one, remember to do it, but also just just kinda flows, and and it's worked really good for us.
Type A, and 49 With an 11-Year-Old38:57
Jen, is your type a anxiety based, or is it rule following based?
Yes. Both.
Oh, yes. You said you have you have Hashimoto's, Jen?
No. My Your mom.
My aunt Your aunt does.
Has some thyroid. No. I that's one thing I don't have yet. Probably, we'll see where that goes. But, yeah, I've got PCOS, Raynaud's, and antiphospholipid syndrome, blood clotting syndrome.
I'm sorry. Yeah. You said all that. I'm I'm I'm digging in here with everybody.
Oh, that's okay.
Forgot. PCOS, difficult to get pregnant, didn't have any trouble, painful, been better since you got older, worse?
So it's the pedal kinda came about after the blood clots. So the blood clots were found because I had been on birth control. So they took me off of birth control. And then that year, I went I was 30. I went off of birth control.
I gained, like, 20 pounds over the summer. And I was like, something like, I was working out, nutritionist. I'm like, my body is not working right. And then I really noticed, like, my periods were really irregular.
Mhmm.
And so then that within a year, I had that diagnosis. I actually went on metformin, and it started regulating my cycle. So I did not have trouble actually getting pregnant. Okay. I think because the metformin, you know, regulated everything so well.
That's lucky. What how is it now?
Same thing. I'm still on the metformin. I'm 49, so it's starting to be some, you know, perimenopause fun mixed in, which is awesome.
Jen, how did you end up being 50 years old with an 11 year old?
We we got a little bit well, a little bit later, sir, we want to we designed and built our own house. So we kinda wanted to get that done pre kids.
Okay.
So that was all happening while, like, the PCOS stuff was going on and all of that.
So I gotta ask you now in the future, how how is your old ass feel about that decision when your 11 year old doesn't wanna go to sleep at 08:00?
I know. Right? Hey. Well, the other one's fourteen. So, you know, it's I know.
Thirty five.
I I don't know how to feel, but, like, you're talking, and it occurred to me. My kids are 26 and almost 22, and I'm only four years older than you. And I thought, oh, thank god I did it like that. Yeah.
I know. I when I Kaitlyn's friends, like, I met the mom, you know, last summer or something, and I was talking. And I'm looking at her, and I'm like, I think I'm older than your mom.
And he's like, okay. I'm not gonna have
that thought again. We'll just move on.
Kaitlyn, wait a year in high school and somebody asked what what your grandmother's doing here, you're like, that's my mom.
On the bright side, both my husband and I actually live pretty young, so I think we have at least that going for us.
Oh, I tell myself that too.
Yeah. Yeah.
I Just
trying to get the wrinkles to go away.
There was a there was a time in my thirties when I really did look younger than I was, and now I just live off the memory that I used to look younger than I am. So Yeah. I'm seeing how long that'll last.
Yeah. Me too.
Yeah. Good for you. So did you ever consider a GLP?
I actually yeah. I I actually started one. Oh, I started working with a hormone specialist last year. And that's helped. We're doing very low and slow.
Can't really get into the hormone stuff yet because of the blood clotting factors.
Okay.
So we're trying to dive through that on what's okay, what's not okay.
Mhmm.
But, yeah, very, very low dose compounded, and and that's helped quite a bit.
Awesome. Awesome. That's true. That's really great. Okay.
Okay. Why did you wanna do this? Is there something you wanna tell people? Are you just a huge fan of me and you wanna say hi? What are we doing this for?
I don't know.
Did your mom tell you we're doing it?
Well, last week, do you wanna be on a podcast? I'm like, yeah.
Yeah. And
she's like, okay. Cool. Do you wanna talk about diabetes on a podcast? I'm like, or? So she got me
on a podcast. Are you getting a day off from school for this?
Yes.
Hey. Is is there something you wanna say to me, kid? It would be like, you're very welcome. Enjoy your day off. Okay?
What are you gonna do with the rest of it?
I have to get another endocrinologist appointment then. I have to get blood drawn, but other than that
Oh.
I got to sleep in an hour. And
Did you pop up at seven? Were you like, see, this extra hour really is important? Not really. No. I was gonna make the argument that maybe you shouldn't have to go to school because if you could just sleep till seven, everything would be okay.
But, apparently, you're not getting up one way or the other.
Like, I woke up better, but it wasn't like
Ten thousand. Yeah. Yeah. I hear you.
I still had to have alarms. Like, on the weekend, I'll sleep till 08:00, and I'll wake up whenever I wanna wake up.
Mhmm.
We should write a note to the school, see if they could maybe push that start time back till nine. You know what I mean?
Yeah.
Let you roll in at a comfortable time. I'm for that. I don't like getting up early if I don't want to. When I when I wake up, I'm happy about it. But if I'm tired, I would like to sleep.
What do you how how do you like school?
It's fun, and my schedule's good because it's like I have I have two teachers, and I start in homeroom, and I have two classes in that homeroom. Mhmm. And then I go, and I have specials, lunch, recess. Then I go to my switch class, and I have two subjects in that class. Yeah.
And then I go home.
Jen, when does the schedule get more rigorous? At what age?
So next year, she's still in the same school. I think she'll have three two or three teachers.
Okay. Two.
Unless math, sometimes they'll pull out for is for math, but that kinda depending on what group she's with. But then when she goes to junior high, then it starts to be seven classes, forty five minutes each, switching three minutes between. So seventh grade is at a junior high, and that's when I think it gets a lot more chaotic in the schedule.
Two Kinds of Anxious45:30
This is gonna be really interesting if the if my recording schedule lines up with our production schedule because I interviewed a a lovely woman yesterday who is so anxious and up and worried about everything about diabetes. And as I'm talking to you guys, I don't feel that from you at all. So is it that you're not anxious and worried, or is it you manage it that anxiety and worry differently?
I think we manage the anxiety and worry differently. I think for me I mean, I know it's an old saying, but, like, knowledge is power.
I
found your I don't even remember how I found your podcast, honestly. I think I the first couple weeks were blur, and I I can say more of on that story in a minute. But I found your practice. I started listening, like, randomly. Like, I think I listened to a pro tip series first, and I was like, woah.
This is a lot. And then kinda figured back way into, okay, bold beginnings and pro tips and then stuff. And I drive half an hour to work in the morning and then on the way home. And so I can pretty much do, you know, an episode a day, and I just soaked it in. And then I'd come back in, like, the really key parts I'd repeat to her and to Chad.
And I think we just I mean, that first appointment three months later, that's when we were at a 5.6 a one c, and we were MDI. And it was just like, you know, I I I can't control. It's an uncontrollable seat. Like, you can't control it, but you can manage it with tools and knowledge and awareness. And I think that kinda gives both of us well, all of us comfort, you know?
Yeah.
Easier to it's almost easier to stay in range than to try to, like, get back in range. Like, you always I think you've said this before.
I agree. Yeah.
I'd rather treat a low than fight a high.
Mhmm. It's funny. As you
kinda taken that on.
That's awesome. As you're describing it, it occurred to me it's like it's like getting a a saddle on a on a and a bit in a wild horse and maybe, like, getting some spurs and jumping on, holding on, being like, look, this thing is what it is. It's a powerful, you know, it's a powerful animal. It's gonna do what it but I could probably try to direct it a little bit. Maybe I could keep it, you know, between the lines a tiny bit.
And you and you got all that from so I've I've made a promise to myself that I'm not gonna act surprised anymore when people say the podcast has helped them. Even though it is my initial. I'm starting to worry that it comes off as disingenuous. I really feel that way, but I feel like maybe people don't believe that anymore. So I don't wanna I don't know.
It's true. Trust me. I'm stunned that you're like, oh, that thing you made, it helped me a lot. But I I've heard it enough now that I I believe it. You know?
Oh, for sure. I we I mean, we did we got great education at the hospital. I think our team is wonderful. Our diabetes educator, you know, we were there for two days. We can reach out to them by MyChart.
We they like, they were we left as more prepared than I think I hear some people leave. Mhmm. Because we were there, like like I said, for two days. But I kinda felt like there was more. And, like, the podcast filled that for me.
You know, I'm a working mom. I work full time, you know, kid with diabetes, life in general, family. And I did buy a book, but I think I read, like, a chapter of it. I don't have time to, like, sit and read. And so it kinda really being the podcast format fit into our life.
And, yeah, I mean, I would say you were instrumental in us being where we are with our knowledge, with our a one c, with our comfort level. I mean, truly, like, we'd rather, you know, free to low than fight a high. We, you know, we tightened our ranges so that we're not, you know, a minor minor even tighter than hers. She lets hers go a little, like, wider just so she's not eating as much in school. Sure.
But if I see it, you know, I'll text her. We do the text diabetes. Mhmm. Pre bolting, they did mention that to us in the hospital. You know, you probably wanna give this to the insulin a little bit before you eat, and that was super scary.
Because at that point, you didn't really understand, like, it's okay to give yourself this medicine fifteen minutes before you eat. Like, it you're not gonna, like, crash. Yeah. You know, as long as the police are concerned, obviously. But, like, you would talk about it, and it started just to become more common.
Like, we just it just made sense to me. I don't know. Like, for me, I'm very math oriented. It just like, the numbers kinda just make sense. Like, I can kinda figure stuff out pretty easy with it.
I don't know. It's not easy. I don't wanna, you know No. I see that. Definitely hard days for sure.
And there's definitely times where she goes low, and you're like, why did that happen? Or high. You're like, that makes no sense. But, you know, we started, you know, working through fat and protein and extended boluses and those kinds of concepts. Like, they, you know, they can only have you for two days.
It's this is a long Sure. Thing to learn about.
Would you Yeah.
It would spend instrumental to it.
Yeah. Oh, I'm glad to know that. Thank you for sharing that with me. Would you say that's a thing that comes easily to you, or did I beat it into your head? Or what like, did you just need it to be said to you, or did you need it to be said to you a certain way?
That makes sense?
Yeah. I think I just needed data. Like, I just need info. I think, you know, the way you describe things. And and I think because you have so many episodes, hearing it multiple ways sometimes is helpful too.
Yeah.
You know, I I actually recently went back and relistened to the pro tips because the first time I listened to them, it was like scattered throughout random. Like, I really didn't know what I was like, I didn't have a plan.
Mhmm.
You know, now if somebody told me, I'd be, like, start with bold beginnings and that you know?
Yeah.
So when I went back and listened to them, I was like, okay. That makes sense. That's why, you know, it it kinda all, like, really clicked. But, yeah, I think it's just having multiple options. Like, sometimes I'm listening to you have conversations, and then sometimes I'm like, okay.
Well, let me go back and see if I can find more of, like, an educational piece or for having a particular difficult time with, like, a fat or a protein. You know? Then I'll go back and listen to one of those episodes or try to find more episodes, you know, specifically to what we're, like, dealing with at that point. Yeah. Am just having, like, an hour in the car.
It's just it's just, know, a good format
Yeah.
To to learn.
No. I I even though you don't have a ton of free time, like, what I feel like I'm hearing is that you prioritize trying to get more information, and you put some effort into categorizing it in your head, going back, making sure that you you hit the, you know, the tones that you needed to hit. And then it just turned into a 59681 z. Yeah. Yeah.
That's how I I imagine it works, actually. Yep. Oh, thank
Like you you say, timing and amount and
Yeah. And
then understanding, you know, those extra things like the extended boluses and, you know, and stuff like that. It's and the fats and the proteins. Like, are you know, I've I kinda call them, like, a little bit next level skills. Yeah. That they didn't because they don't you know, first day in the hospital, they're just trying to keep you alive.
They're caring that you're gonna you know, and you haven't met your MDI. So, like, those are concepts that you haven't even touched on at that point. Yeah. So, yeah, it was it's a huge problem. When I was I just printed a graph that will go on the endo after this and, you know, 93% range.
Mean, she's just she does so good with it. Like, I have to say that I as much as I've learned and told her, like, she's amazing to be 11 in being able to handle this. Like Mhmm. If she sees herself going high, she'll correct. You know, if she sees herself going low, she'll treat it with, like, one or two carbs.
And, you know, and there are times where she's busy, you know, so she's on the swings. All of sudden, she'll drop really quick, and the nurse will come out.
Sure.
But but she handles so much. Like, I'm fortunate too that she's as smart as she is and as conscientious as she is about it because it makes as parents, it makes it work better as well because she's not doing all these crazy things. She's not randomly eating. She waits fifteen minutes or more or what. You know?
No. Yeah. But she's she's good about it. Jen, again, what do you do for a living? What was your did you get a degree?
How are you educated?
I'm an architect.
Okay. So you visual and
Visual, math. Yeah. Numbers.
Yeah.
Yeah.
Because you really took you really took to all this.
I did. And I'm surprised because I am not medical. I made myself give her a shot before we left the hospital because I was like, I have to I have to know how to do this. My husband is much more comfortable with anything medical. Like, if they if we're both home and one of the kids gets hurt, dad.
Okay.
I can't do I you know, I'll do it if I'm here. But if there's a choice between the two of us and there's something I won't let
them die. But, I mean, I'd prefer not to be involved.
Right. I'd prefer that dad handle it.
Dad's here. So, you know, interesting. He's the one, like, that came you know, we you're learning all that math with the correction factor in the hospital. And I think I was so overwhelmed at the beginning. Like, I had a harder time understanding, like, what was the math we were learning?
And he went home and, like, broke it down and then came back and explained it. Like, this is the correction factor portion of the equation, and this is and this and I was like, okay. That makes sense. And and so, like, we've kinda both been you know? And I'm the one that listens to the podcast and kinda regurgitate back to everybody Yeah.
You know, what what we're doing. But
Do you think he takes any of that from you and adapts it for himself?
For sure. Yeah. Yeah. You know, and and it's one of those where we're both home. If it's a sight change, it's gonna fall to him.
Right. He's just better at it. It's his he's more mechanically inclined. He's a more hands on kind of a guy, so that makes sense that that's in his wheelhouse. And if it's more like, okay.
What are we gonna do for an extend or a split or whatever? It's easier for me, so I'll kinda take that on. But if I'm not here, he'll he'll be doing it too.
What's what does he do for a living?
So he's he's a he's a contractor by trade, but he actually changed, and he's a vocational carpentry teacher about five years ago.
Okay.
So now he's a teacher, which actually works really good with summer schedules with a kid with diabetes.
Oh, and not only that, but he's good at at explaining something technical to somebody too.
Very good.
Yeah. Yeah. Yeah. Hey. Hey.
Hey. How does it feel to hear your mom talking about this, and and how does it feel for you to to hear how much your parents care about you and how hard they're trying to to to be good parents for you?
Feels good.
Yeah. You you you know everybody loves you?
Yeah.
Yeah. That's a great feeling. Yeah. Very cool. I I'm I'm just gen like, I like I said, the person I spoke to the other day, she's no more or less intelligent than you, no more or less focused, no more or less desirous of a good outcome.
And I'm trying to figure out what the difference is between the two of you. And I think it's that you know that everything could be crazy and terrible, but you trust that the things you're doing are gonna stop that from happening. And she and I think she can't believe that it's not gonna go wrong. I really think that's the the slim difference between the two of these conversations.
It's interesting. I actually had a conversation last last night, the night before with my husband because he doesn't have social media. He doesn't like any of that. But I, you know, I follow a number of, you know, common t one d kids on on social media. And so I'll often tell him stuff, and there was one that had a very scary low.
And they were, like, ten years in. You know? And I said to him, I said, I want when we settle, you know, someday, I want you to read her the mom's, you know, description of it because I think sometimes we almost get too complacent. Like, we got this. I mean, Kaitlyn hasn't had any lows less than 55 in the last looking at her Dexter last four weeks.
So, like, we you know, it's almost like sometimes we have to remind ourselves, like, not to be so complacent.
Mhmm.
Like, we we do have to, you know, always stay on our toes.
It's like it's like a like a fender bender. Right? Like, you can drive for twenty years. You know exactly what you're doing, and then just one day, you're, like, back into a car in your driveway, and you're like, oh my god. Like, really?
Yeah. Yeah. No. And and you don't know when that's coming or if it's coming and how to plan for it if it does. So yeah.
No. No. I take your point.
For me, part of it too is is, like I said, I'm a planner. And so part of my comfort level is we always have everything we need at all times. Like, I have created quite stockpile of supplies. She always she carries a sling pack to school, and it's got her low treatment in it, like, different kinds of low treatments
Mhmm.
And a back semi. Her bag that we take whenever, like, I'm out and about with her has, you know, everything in it in the backseat. You know, I've packed the camper for the season with half of her supplies from home. You know? And so part of my comfort level too is knowing that, like, I have in, you know, sugar free Advil.
I have sugar free cough drops. I have what's the medicine that makes you not nauseous? Zofran. Zofran. Thanks.
I have Zofran, you know, stocked and ready. So I think for me too, like, that planning part of my life where that's kinda how I cope, but if I I have everything I need to be able to handle any situation
Mhmm.
That helps bring me comfort.
Yeah. No. That's awesome. I listen. I I know other people have that stuff, and they can't feel the comfort.
So
Yeah. And I I don't know what the what the difference is because, like Don't know me. I'm not a not anxious person.
Yeah. Really. It's not like I'm not anxious, Scott. Let me tell you.
Not like I'm yeah.
You know, I may not sleep a whole lot, but I'm good. Okay.
Do you do you not sleep at all?
You know, I'm well, I'm the one getting up in the night because I sleep a lot lighter than everybody else in the house. So if she does, you know, have a compression low or she does need something in the night, I'm the one up. But then, you know, fun perimenopause in the mix decided
Yeah.
It's hard. Really hard time of life.
Oh my god. Sometimes I wake up and I look at my wife. I'm like, alright. Have you ever been to sleep tonight? And she's like, I don't think so.
And I'm like, oh, okay. Good luck today. Yeah. This part's probably almost over. You know?
Probably not, but it's been years.
Probably not. Yeah. Keep telling myself it's probably almost over. Yeah. We're good.
You know, the other night it's usually the first night she has a Dexcom on. She only wears them on her arms. Mhmm. It's almost pretty common the first night depending on exactly where it is, but she'll have, like, one or two compression lows, and then they usually go away. The other night, she just that was the arm she wanted to sleep on, and I'd roll her back.
And then she would be, like, right like, she couldn't be more on that Dexcom. It was, like, five times in one night she had compression lows. So I'm still getting up. I'm rolling her over depending on you know, look at the graph. I'll kinda gauge, like, okay.
Do I wanna wait five minutes and see if we pop up? Do I wanna finger stick? And, you know, that that wakes you up for a little bit. You can't just go right to sleep after that.
I hear you. Arden, roll over. You're laying on your sensor. Arden, roll over. You're laying on your sensor.
Except Kaitlyn doesn't wake up, which is good. I mean, I can come in and I finger stick her. I give her juice. I roll her. She has no memory the next morning.
She doesn't and so on the bright side of her not wanting to wake up in the morning, she doesn't wake up at night either.
Mhmm.
So she, you know, she doesn't have to deal with, you know, any of that stuff yet. I'm not sure how we'll get there with because she's not a wake girl up.
Yeah. It comes eventually. I I I went in the other night, and Arden was literally cuddled up with a box of cookies. Like like, she she the the cookies were a little spoon. Arden was a big spoon, and she and she just and I was like, what is happening in here?
So because I asked her later. She was like, oh, she's like, I brought those up the other day, and they were still in my room, and I got low. And I was like, I had a cookie, and I was like, okay. Like, all good.
I fell asleep with them.
Yeah. But she just fell asleep with them on her bed.
Well,
it sounds like you guys are doing really well. The only
It Can Be Manageable1:02:36
question Well, I think that's one of the reasons I wanted to come on is, you know, it it's not that it's easy. Right?
No. No.
It's not that I don't wanna sound, you know, overconfident because, obviously, we have struggles. But it it can be manageable. We can do it. We you know, and we are doing it because, one, we have no other choice. But, yeah, I think we're doing okay with it.
And sometimes it's good to hear that part too. I know it's the negative stuff tends to get more clicks as you've been saying lately, but sometimes I I'm hopeful that hearing, you know, our story and 11 year old handling it so well Right. Can maybe give some others some hope or confidence.
No. I'm glad for you to do that. I really am. It's yeah. I mean, listen.
It's trite to say, but if you're paying attention to the Internet at all, obviously, like, you know, anger and and fighting and arguing, that stuff sells clicks better. I think it's just maybe human nature. And then you get the the feeling that everybody's struggling because that's all you see.
And Mhmm.
You know, then maybe you're struggling too. That's how it was served to you. And then you you get into this mindset that the whole world's a disaster and, you know, see, I I I can prove it. I clicked on a couple of things, and everybody else is mad too. But that's not the case.
Everybody's not feeling that way. I think just people are, you know, diabetes specific, just in different parts of their journey, and maybe they have different personalities. They handle things differently. But I think there's a path through this for most people. You know, I I don't know if everybody can get to it.
Like, some people's struggles are obviously significant and, you know, sometimes they're blocked by all different variables. It could be financial. It could be the devices. It could be bad doctors. It could be their inability to just believe that it's gonna be okay.
Like, you know, in a number of other things. But it still seems it still seems important to me for everyone to be to have access to stories like yours. You know?
Oh, good.
Yeah. Because hopefully, somebody will hear it and think, well, she's doing it. And, you know, it sounds like it's going well for her. You know, maybe I could maybe I could make an adjustment to how I'm thinking about this as well. And even, you know, Kate over there at her young age has has a great attitude about the whole thing.
You know? She's a it really not complaining. I mean, I'm sure like, Kate, if I asked you to complain about diabetes, what would you complain about?
How it hurts is, like, sometimes teachers are, like, put your phone away and, like, all the stuff that goes into it, like, 10,000 other decisions you have to make per day.
Mhmm. And and, Jen, do you think she's experiencing any kind of a honeymoon?
So I don't think so because we're so consistent. Like, those those rare outliers where she goes, like, low for no reason are are so rare that I'd feel like I'd see that more if we were still in honeymoon. Mhmm. Like, her insulin usage per day is pretty consistent if her carbs are consistent.
Okay.
So I don't know. I don't know how to tell that other than I think I would see more variables.
Yeah. I think people who are living through a honeymoon go, oh, no. No. It's there. I I see it.
So, yeah, I usually I take the it doesn't seem like it as a no. It's not here. Yeah. I would say this, you know, having a, you know, a kid with, like, you know, some some lady issues. Paid close attention to how the GLP is helping you so that you have context for it if she should run into similar problems.
Yeah.
Yeah. Yeah. Yeah. Because when I was dating Kelly and we were young, she's like, I take spironolactone because I have tough periods. And trust me, over the last thirty years, that that that cute little, oh, she takes a little pill because it has turned into, you know, I had to have a surgery to have a cyst removed from my, you know, my ovary and, like, you know, and my god, like, heavy periods, pain.
Probably Arden probably has something like PCOS or something like that. I wouldn't be surprised if my wife isn't struggling with something similar. You know, there's not a lot of medical help for it. So any data you can collect about yourself not only will help you, but I think might be valuable for her in the future. And then I would also say with the family involvement, like, don't stop looking at, you know, thyroid numbers, you know, as time goes on, just in case.
Yeah.
For sure.
Yeah.
I was actually the woman I would I'm working with, guess you call it, like, a concierge doctor
Mhmm.
Specialty. I you know, I was actually emailing her last night, like because we'd just done some more blood work. I don't know the result yet, but I was like, you know, just emailing back and forth. What you know, what do you let me know what you think and stuff like that. Just trying to be on on top of it because, you know, my my history health history isn't the best either.
Yeah.
You know? And and I gotta remember too. I mean, it's my aunt with diabetes, and, you know, PCOS is obviously related to, you know, insulin resistance or issues. And, you know, and then now with Kate, like, I gotta I tell myself occasionally, like, I'm not out of the woods just because I'm 49.
I was just saying I didn't bring that up, but, like, I wondered if you were thinking about that.
Oh, yeah. It's crossed my mind. And even my, you know, my son is 14. He's like, oh, you know, like, that, you know, sucks. And I'm like, hey.
Just so you know, like, we're not gonna have him tested because part of me, I don't like, if I knew it was for sure coming, not knowing when, like, that would not help my anxiety. Mhmm. Like, I'm just one day, he was like, oh, I'm really thirsty. I'm like, give me a finger. You know?
So I think we'll be on top of it.
If He's never asked for water again. Like,
let me
take your blood sugar, and it was fine. And he's you know? So I think I'll now knowing what I know, I'll be, you know, much more on top of it. I'd rather just do it that way than, no, it may or may not. Because I you know, he's obviously has a sibling.
You know, he's at a risk.
Yeah. Well, listen. Keep chugging along. The only thing I can tell you is that Arden was diagnosed when she was two. And when I'm done here with you, I've been tasked with going out and ordering a bouquet of flowers for her commencement tomorrow.
So
Oh, that's awesome.
Time goes by. You know? And and It
it does. It flies by. And you just
keep doing the thing. Is that crazy, Kate, to think you'll graduate from college one day? Yeah. Yeah. It seems like forever from now.
Yeah.
Yeah. It's not not as long as you think. By the way, people, Kate doesn't feel good. She got a little cold, so I wanna give her some credit for doing this while she's not feeling well. What do you think is going on here, Kate?
Head cold, sore throat? What do we got going on?
I don't know. It could be allergies, but I don't have really many allergies.
Oh, jeez. Are are you taking any medication? Has your blood sugar been different since you haven't been feeling right?
No. My blood sugar has actually been really good. Okay. I've only been using my inhaler, like, once every few days.
Okay. When Arden's like, certain kinds of colds balance Arden's blood sugar. Like, make them
They balance it out?
Yeah. Like, there's some illnesses when she gets them, that that her blood sugars are lower and more stable and and take less insulin. And then there's some illnesses where it takes more insulin. It's interesting how it kinda goes back and forth. So maybe you got one of those.
Yeah. She doesn't I haven't I noticed, like, the past I mean, she she had a cold, and then she I thought it was getting better, and then it's another cold. So I think it's two different colds.
In a row.
It could be the same one with a gap in between. But, you know, the last couple days, I was like, oh, is your insulin need a little less? But then all of a sudden, it'll be, you know, she'll be high. High. Well, high for us.
You know, she'll be at one eighty, 200, and I'll be
like, k.
Maybe I'm around. It's not less.
Wait till the lady time starts. That's a big party.
I yeah. I've already been prepping her for that. I'm like, we're gonna have some insulin changes when we when we get there.
That's okay. You got you guys will handle it.
We'll handle it.
And, I mean, I think part of, you know, being aware, like, you know, of what's going on and watching you know, I'm not watching all the time her numbers, but being aware of her numbers and how they're doing. I don't know. I make changes to her settings on my own, so we'll have a talk about that at the end of the day. Mhmm. Like, I I noticed that night, she was starting to go a little higher, eight, nine, 10:00 at night.
I'm like, oh, I'm gonna I'm gonna bump up her basal a little, you know, starting at, like, seven through, like, eleven because I think she's getting a little bit of growth hormone happening then. And so I did. So hopefully Yeah. Yeah. Yeah.
It used to work. You know, I don't know. You know, I don't think they're used to many people coming in with, you know, what I consider, you know, five, six a one c and making confidently adjustments. Like, I've, you know, I already started creating we're gonna be driving for three days this summer down to Florida. And so I've already started, like, kinda play around with what a travel profile will look like because her bail leads are gonna be crazy at that time.
She goes so high when we travel.
Yeah. It's the well, you know Like Why do you think that is, Kate? Do you know?
Just from sitting, all my fun can't move. Like, even when I get home and and sit on the couch, it, like, just I need to get up and, like, move my phone around.
Yeah. That's right. It's exactly right. The sitting still and probably snacking in the car is enough that your settings, the way they work for you in your day, are probably not enough. So, I mean, you know, you could try, like, a 20% increase in in basil and and maybe your carb ratio for the trip that might help.
And
That's exactly what I've changed.
Yeah. Yeah. Yeah. And you you should be good to go.
We did a couple hour ride, and she had bulls for 10 carbs. So was like that time of day, was like point eight units. And we got in the car, and her blood sugar went up. And she didn't even end up having her snack. She doesn't like to eat if she's, you know, over one fifty.
She likes it to be lower so she knows she's not gonna go over 200, you know, for that bump. And she's like, oh, I'll just wait because we're almost there. And and so then I'm like, okay. Well, if her this is how my brain works. You know?
I'm like, well, if her basal's point five an hour and she gave herself point eight and it was an hour and a half in the car, that was almost double basal for that ride, and it barely kept her where she was starting. Mhmm. Even pumped her a little bit. And I'm like, well, does that mean basal you know, should we be looking at we're gonna need a basal increase. I actually increased it from it was point six to, like, point nine for my travel profile.
So a lot more like 30%.
Yeah.
And, I don't I don't know. I mean, I'm just kinda playing around at
You'll figure. I mean, it's listen. You'll be in the car. You can you know, if it's too much, you'll you'll know pretty quickly. You can take care of it.
But I guarantee you well, I can't guarantee you, but I don't think it's gonna end up being too much. She's just
probably You know, if it is, I can give her a piece of candy. Sure. Yeah. And you guys wanna feed the insulin, but why not?
And she's pretty act she's pretty active during her regular week, it sounds like.
Yeah.
Yeah. Right, Kate? You have you're doing sports or other activities? You're playing on the playground, stuff like that?
I do a school program where, like, you go early. You have to go early in the morning and then stay late after school, and you just get to play on the playground for, like, hours. And then I come home, and I play outside with my brother. And I do horseback lessons. Yeah.
And sometimes I'll do lacrosse with my dad.
Mhmm. And
I do cheer, and my blood sugar usually stays pretty stable Yeah. And goes low. But I have I also play the saxophone, and I have a concert coming up, and I think I'm gonna go high for that.
Do you get nervous for those concerts?
Yes.
Yeah. And that's well, that's where that comes from then. And, I mean, yeah, you you hear the whole thing right here. Like, she's she's super active, so her settings are a little lower to combat her activity. The activity's helping with her insulin sensitivity, basically.
And when you sit still, it's not going to. What are you guys going to Florida for? Gonna see an alligator?
I don't know. Maybe. We're going we're we're going to Disney in June and July. Ironically, we're gonna be there as Friends for Life is starting, but we're leaving, like, a day later planned. You know, I didn't know Friends for Life was gonna be there that
day. And
I looked into it. I'm like, well, let's what if we just skip out on Disney for a day, and you and I go over to Friends for Life for a day on our last day. And, you know, I and but then I looked online, and you have to buy, like, the four like, the full ticket. Like, there's no day ticket.
Oh. And I
was like, ugh.
Can't do that. What is it? '8 Yeah. Ninth, tenth? Is that Friends for Life?
The like, end of the weekend there?
Yeah. Yeah. Yep. And we we leave to drive home the morning of the tenth. So the ninth would have been, like, a great you know, I'm like, you know, we could Kate and I could have gone up because I wouldn't wanna make her brother do a diabetes thing on vacation.
Yeah. So they'd probably just go do something together, and I'd go over with her. But, like, well, we we'll just see people around. Like, I you know, we might see because we're gonna be on Disney property too. We might just run into more.
You might. I'll be there. I know I'm there. I'm only I'm not there the whole week, but I'm there a few days. So
Oh, we might run into you.
You're very welcome.
Maybe we'll have to go over to that hotel and just hang out in the lobby for a little bit, see if we say hi to anybody.
Please. Just text me or email me. I'll come out and say hi. I yeah. I think I'm at the I'm at the SugarPixel booth and doing some work with Omnipod and maybe Tandem too while I'm down there.
I think we're working that out now. So yeah. Cool. Alright. Well, listen.
You guys were terrific. I appreciate this. You probably have to get going to your appointment. I have to go buy flowers. I was just texted that Arden is graduating magna cum laude.
So it's very exciting.
That's awesome. Yeah. Yeah. Yeah. Congratulations.
Thank you. She's a he's a smart one too. So it's fun having smart daughters.
It it really is. Yeah.
It makes
some things very easy.
Until they get older, and then it's really it's then she's gonna spend a lot of time telling you what you're what you're doing wrong, Jen, just so you know.
Oh, well, I
already get that a
little Yeah. Yeah. She's gonna she's gonna figure out everything you don't do right, and she'll explain it to you.
Okay.
So you're gonna have it's a nice moment when you test yourself for being quiet. Yeah. Anyway, Kate, I really appreciate you doing this. It sounds like you're doing terrific. I'm super happy for you.
I'm glad the podcast has been helpful for you. But it sounds like your mom and dad have been way more helpful. So I'm I'm thrilled that you have a good support system around you, people that love you, and it sounds like you're well on your way to having a great life. I'm super excited for you.
Finding Community1:18:06
Yeah. She's she's doing really good. I have to, you know, also thank, you know, some friends. I when when we got out of the hospital, the week went worse, believe it or not. Our other cat passed away the day after we came home from the hospital.
Oh. And then the day after that, Kaitlyn got a 105 fever, and we ended up back in the ER. So, like, that week was absolutely crazy. And I had a friend neighbor come over, you know, or text. She's like, I'm bringing you dinner.
What night do you want and which of these dinners do you want, which was, like, super helpful. Mhmm. And when she came over, we just sat on the porch talking for a little bit. And she was like, oh, do you know our other neighbor down the street? Her son has type one diabetes, and he's two years older than Kaitlyn.
Oh.
And she's like, I'm gonna connect you. And so she connected us with them, and that woman's been you know, she's
Very helpful, I imagine. Yeah. Yeah.
Yeah. So helpful. They came over a couple weeks later. Kaitlyn got to see, you know, another kid with a pump. You know, they're two years older.
He's a boy. She's a girl. But at that point, he was still at their school. Mhmm. So the nurse was great with, you know, oh, this is how they do it and, you know, me talking to that mom.
So just, you know, having other resources around has been super helpful too.
Oh, yeah. For
sure. Know where I don't know where it's going with that.
But No. Well, you it's just important to have community around you wherever you can wherever you can make it, wherever you can find it. It's it's just Yeah. It's incredibly valuable. Yeah.
I'm glad for you.
For sure.
Yeah. That's why and thanks and thanks for sharing all that nice stuff with me. It just it was really nice to hear how the podcast has helped you, and I I appreciate you sharing it with other people as well.
Yeah. I know. I definitely I mean, I haven't run into too many other, you know, newly diagnosed, but when I when I do, I definitely share it. I definitely shared it back with RCDE and and the team.
Do they handle that well when they when you say, hey. I've I've figured this all out from a podcast?
Yeah. And they well, so the the endo seems to be, I think, a little bit more conservative. The CD who we had in the hospital that first day well, so Kaitlyn had a nurse who was a type one diabetic for the first day she was in the hospital. Mhmm. And our diabetes educator was a die is a diabetic.
So even right off the bat, having two people that have this thing that you now have who are successful in doing what they're doing was such a huge relief. But, you know, over times that we run into them, and they're just you know, especially the the CDE when we run into it, you know, appointments with the endo, you know, she'll be like, how are guys doing? We'll just kinda sit and talk, and I was telling her about how we're soaking our Dexcom. And she's like, can you email me everything that you're doing? And I was like, yeah.
No. You know? And I also emailed about the Juice Box podcast and super receptive
Okay.
To that. Because I think, you know, having people who, like, for you know, understand it. I don't wanna say understand it. I mean, we're still new. Mhmm.
But, you know, having that communication level and being like, this was great, like, without saying that they weren't. Like, this is just more. Like, we had a great start with them in the hospital. But it's only two days.
Right.
You just need more. And I think that they were open in the fact that there's more and that we're taking more and we're learning and that our a one c's I mean, they were they were, like, cheering with her that her a one c was so low, and they were super excited about that. And then they were talking pump site locations, and it was just kinda neat, like
Sweet.
To have that. Yeah. Yeah. We're really fortunate in that regard.
Yeah. No. It's fantastic. I actually just built a web page that's for doctors. It's just juiceboxpodcast.com/clinician-share">juiceboxpodcast.com/clinician- share.
And it's an it gives them the ability to, like, print, copy, text, or email the different series more easily. So Oh, wow.
That's great.
Yeah. For doctors who have been sharing it that way, they you know, the problem was they're like dragging lists off and pictures and sending people stuff. So try to make it a little little easier for them.
Then Do you find a lot of doctors are are open to that and open to sharing?
Yeah. A lot of them are. They, you know, I don't know how public they are about it that they share podcasts with people, but they do it. So it's nice. I'm I'm very happy that about the ones that do.
And hopefully, we can, you know, spread it out and show it to other people, and maybe they can find more people like you and and have more outcomes like the ones you guys are having. Yeah. Yeah.
Definitely. It'd be awesome. Alright.
I have to go. My dog, speaking of elderly pets, my my my oldest dog, Basil, he has a prostate problem, and apparently, the way you fix that is by taking their manhood from them. So he had that happen to him yesterday. He needs a pain pill in about twenty months. So I'm gonna go Oh, no.
I'm gonna go get my dog nice and loaded so he can lay around today and recover from his, well, you know, his unfortunate afternoon yesterday.
So Yeah. For sure.
Anyway, did we lose Kate, or is she still there?
I'm still here.
Okay. Kate, I really appreciate your time. Thank you so much for doing this with me. I hope you have a great day, and I hope the blood draw goes easy and you get great news at the endo, but I think you're going to. You're doing a fantastic job, kid.
Hey. Do you not take a good do you not take well when people say nice stuff to you? Is it hard to hear that you're doing a good job?
I don't know.
No? Okay. You go ahead and go. Do think? Go no.
Go ahead. Okay. Do you think you're doing a good job,
Kate? Yeah.
Yeah? Okay. Well, I'm proud of you, and I think your mom is too. So go be proud of yourself and have a great day. Okay?
Thanks.
You're very welcome. I'll talk to you later. And Jen, thank you so much. If we bump into each other in Orlando, that'd be fantastic.
The podcast you just enjoyed was sponsored by Tandem Diabetes Care. Learn more about Tandem's newest automated insulin delivery system, Tandem Mobi with Control IQ plus technology at tandemdiabetes.com/juicebox. There are links in the show notes and links at juiceboxpodcast.com. Today's episode of the juice box podcast is sponsored by the Dexcom g seven, and the Dexcom g seven warms up in just thirty minutes. Check it out now at dexcom.com/juicebox.
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Well, here we are at the end of the episode. You're still with me? Thank you. I really do appreciate that. What else could you do for me?
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#1903 The Secret I Kept
The Secret I Kept
Erin was diagnosed with type 1 at eight and spent years hiding it, tangled up with an eating disorder. Now in recovery, she talks about shame, secrecy, and finding her way back.
Jump to a moment
- Recovery from a disordered relationship with food and insulin is possible — even after years. Erin describes her A1C today as the best it’s been since she was about ten, and says she’s in the best place she’s been in a very long time. Her point in coming on was simple: people can and do get better.
- Shame and secrecy did a lot of the damage. Erin kept her type 1 hidden for years and hid what she was struggling with on top of it — and she’s clear that the hiding, more than anything, is what she’d tell a younger version of herself to let go of sooner.
- What finally helped was a combination, not a single fix: growing up and taking ownership of her own care, a therapist who set firm, caring boundaries, ongoing therapy, and medication (Wellbutrin) that she says has been helpful. There was no magic moment — she wishes there were.
- Small goals beat all-or-nothing thinking. Her advice from the other side: trying something is better than trying nothing, and steadier blood sugars made a real difference in how she felt day to day and in her ability to keep going.
- Complications can show up even as things get better — and that isn’t a verdict on your worth or your effort. Erin is candid that she’s dealing with some, and frames it plainly: she’s “not a magic unicorn.” Getting screened, and staying honest with your care team, is part of the work.
- National Alliance for Eating Disorders — US helpline and free clinician referrals for all eating disorders
- NEDIC (Canada) — National Eating Disorder Information Centre; helpline and support for Erin’s home country
- We Are Diabetes — support specifically for type 1 and eating disorders (including insulin restriction)
- Mental Wellness Series (Erica Forsyth) — ongoing conversations about mental health and type 1 (verify slug)
- Juicebox Podcast Facebook Group — community around type 1 (verify URL)
- Juicebox Podcast — all series and free resources
Every word of the conversation
Meet Erin0:00
Friends, we're all back together for the next episode of the Juice Box podcast. Welcome. 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. 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 becoming bold with insulin.
Today's podcast is sponsored by US Med, u s med dot com slash juice box. You can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, Libre, Omnipod, Tandem, and so much more. Usmed.com/juicebox or call (888) 721-1514. This episode of the Juice Box podcast is sponsored by Omnipod five. Omnipod five is a tube free automated insulin delivery system that's been shown to significantly improve a one c and time and range for people with type one diabetes when they've switched from daily injections.
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Diagnosed at Eight, 20082:23
My name is Erin, and I've been type one diabetic since I was eight years old. So I was diagnosed back in 2008.
2008. What are you? '26?
'26. Yes.
Wow. That's great math on my part right there. I, failed algebra, but I was good with the pluses and the minuses, just so you know. You, started differently than almost everybody else.
Did I? I had no idea what to say.
No. It wasn't what you said. It was the tone you set it in. You were like, well, yeah. So I'm Aaron.
It was like it was like that. I I can't wait to find out what all that means. So tell me a little bit about yourself current day. You're working, in grad school. Like, what's your life like right now?
I'm actually just going back to school in this coming September. I had taken some time off while managing some diabetes related things, so I'm going back to a life sciences degree in September.
Okay. To finish up your undergrad? Yes. Undergrad. Interesting.
Okay. We're gonna find out about this. Your parents, they're married, divorced?
They are married. I live on my own, but I live very close to them, and I I see them a lot. I'm I have a good relationship with my family.
Nice. Brothers and sisters?
Yes. I have three older brothers.
Wow. That's a that's a thing. How about those TikTok videos where older brothers come in the room, like, they grab your hair, fart, and run out? Is that a thing that actually happens?
I'm I honestly, I've I'm not on TikTok, so I don't know what I haven't seen videos like that. But, no, my brothers are great. They're definitely on the protective side, like, a lot of people assume. But, yeah, I loved growing. I loved being the baby of the family, and they definitely spoil me.
So Nice. Anybody else in the family have type one or maybe other autoimmune issues?
No. I'm the only type one, and no autoimmune issues as far as I know.
How about for you? Do you have any others? No. Okay. Interesting enough.
You're diagnosed when you're eight?
Yes.
When you're eight years old, what do you remember happening?
So I remember I the thing that brought me to the doctors was my excessive thirst. I was drinking so much all the time, so thirsty. So my parents brought me to our family doctor who was actually away at the time, and it was a different doctor subbing in. And he didn't seem concerned, didn't wanna run any tests, said, you know, it's probably the change of season. Two months later, I was still at this point, you know, weight was an issue.
I was still drinking, still constantly going to the bathroom, everything. So my parents brought me back, and my regular family doctor immediately was like, well, we need blood work. So got the blood work. I was getting ready for school one morning, and the doctor called my mom and said her blood sugar is at 47. You need to bring her to the emergency room.
So, yeah, I remember going to the emergency room really confused because I didn't feel sick, and everyone, you know, kept telling me, oh, like, you must feel so you're gonna feel so much better soon. And in my head, I was like, I feel like I always feel. Mhmm. So, yeah, got thrown into all that at eights. Hey.
When your blood sugar was low
when they took it?
Oh, no. Sorry. So I'm in Canada. So Oh. '47
You didn't say that. You didn't say you lived in another planet. Now I understand. Yeah. Okay.
That's fine. Yeah. Okay. Because I was confused for a second. I was like, for because sometimes people do experience low blood sugars in the lead up to their diagnosis.
So I Oh, yeah. Yeah. I just wanted to be sure. Now I hear it. You said, oh, yeah.
And now I I don't know how I missed it to begin with. Sorry about that. Your oh, yeah gave you away. Okay. So 47, I guess, just for the people.
Wow. Hold on a second. That is a banger of a blood sugar. You were Yeah. You were up there.
Your a one c was probably crazy by the time they caught you. Yeah.
It was it was, like, 13 or somewhere around there.
Were you in DKA when they got into the hospital or no?
I was. Yes.
Yeah. But you said you've you felt fine, though, you said?
Well, I just I, like, I felt no different than I felt day to day, like, which in hindsight, I wasn't feeling great, but I was just Getting used to living like that.
So I'm sorry. I cut you off. But, yeah, you were getting used to feeling like that. Yeah. I see.
Okay. Well, do they do in Canada? I mean, immediately, I guess, they strap you to, like, three sled dogs and they take you take take you to the big hospital in the city. Right? Like, or what happens?
A Crash Course in Type 17:23
Yeah. So I was in the hospital for, I think, like, four days. My parents got, like, the crash course, all that. Got started on insulin. So back in 2008, so I there was no CGM.
Mhmm. So and I was on NPH and rapid acting insulin. And back then, one thing I really remember that sticks out in my childhood is not going by, like, dosing for what I was eating. It was like I had certain times of the day I would eat, and I had a certain amount of carbs I had to eat at that time
Mhmm.
And not go over that range, not go under that range because my insulin was, like, set doses. Like, I wasn't adjusting my insulin based on what I ate.
Shooting at a certain time, eating a certain amount of food?
Yeah. Okay.
And how long did you do it that way for?
Definitely at least a year. And then I think finally, we got introduced to the, like, insulin to carb ratios kind of idea, and then I eventually switched to, like, Lantus and still rapid Humalog or yeah.
How do your parents handle the the division of labor around diabetes? Is it like, don't worry. We take care of it, or did they do that? Like, it's her disease thing. She's gotta figure it out.
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Yeah. So I was definitely a very, like, independent child. Like, I liked to do things myself. So I was always very involved, but so were they. So even, you know, letting me I eventually started taking over calculating my doses and drawing it up in the syringe, and my mom would double check or we'd do the calculation together.
It was very much a team thing
Yeah.
Which was nice. I liked, you know, knowing what was going on. I liked feeling like I could calculate it myself.
Mhmm.
So, yeah, I I would say my mom definitely my dad was kind of in the background. My mom definitely took the the driver's seat there. But
So
Yeah. It was good.
Yeah. Did your was your mom, like, a work was she, like, a stay at home mom? Did she have a job? Do you remember any of that?
No. Both my parents worked. In the very beginning, they would drive home from work at lunch to give me insulin at lunch at school, because my school didn't have, like, a nurse or anything like that. So, it was really up to them to get there to give me insulin.
Yeah. Did you feel isolated? Did your were your friends reasonable about all this? Were you nervous or confused or embarrassed, anything like that growing up?
Yeah. So in the beginning, when I was first diagnosed, I I wouldn't say, like, I was excited, but I thought it was kind of cool. Like, I thought, like, oh, like, wow. Like, this is different. And I specifically remember telling one of my friends, like like, guess what?
Like, I was diagnosed with, like, diabetes. And at the time, that friend's response really shaped how I ended up feeling for the rest of my childhood because they they instantly said, oh, that's because you eat too much sugar. And all of a sudden, my full idea of it switched, and I felt so much shame around it. And from that point on, I kept it a huge secret. I did not tell anyone that didn't need to know.
I hid it from my classmates, from friends even as long as I could. It was just this big secret because I felt so much shame around it.
Oh, I'm sorry. That sucks. Do you think they was that a a malicious thing from that person, or you think it's just the thing they thought to say because it's the thing they heard?
Learning to Hide It13:22
I I think it's just what they heard. Like, it was we were young at the time. And I think, like, you know, hearing things about, like, type two or, you know, knowing different people with other types of diabetes and just the misconceptions.
Mhmm. You know? But it's you're saying it stuck to you, though, like, a long time or just in your adolescence?
For a long time. Like, up until I was probably, like, 18, 19.
Okay. Did you ever reexamine it? Like, did you ever stop and say to yourself, like, maybe they're wrong or, like, try to you know what I mean? Like, try to reframe it for yourself?
Yeah. I think definitely as I was a little bit older in my teenage years, you know, I I knew that, you know, I didn't cause this. This is people have misconceptions of how this happens or what it means, but I just felt ultimately that if people knew, they would have this idea of me or they would assume things. And I didn't really realize at that point that I could help educate. I could help, you know,
improve. I mean, nor could you have to if you don't if you're not interested in it. But so I okay. So initially, it's, oh gosh. What you know, I'm different.
I'm I can take care of myself. You're on not excited, like you said, but you you're up for the the the challenge of diabetes. This person says something to you about the sugar thing. At some point, you realize that's not even true, but the protectiveness comes from thinking, like, I don't need to go through this with every person I meet. Right?
Yeah. Yeah. Yeah. And I'm not looking to be the the encyclopedia diabetes and explaining everything to everybody.
Yeah.
Gotcha. Do you do the what would you do now in present day if somebody said that?
I think I would definitely just say, like, oh, it's an autoimmune disorder. Like, it I don't know why it happened. There's they don't really know why, or just something simple. Like, I wouldn't. Or I might not even say anything if it's someone I'm I know I'm never gonna see again or Mhmm.
You know?
It might just be like, listen. Yeah. I gotta go. I I can't I can't spend a lot of time here with you today explain explaining this whole thing to me. I gotta go play hockey.
Right? Okie? Yeah. Yeah. Or something.
Whatever you guys do. What whereabouts in Canada are you?
Ontario. Okay.
I don't know what that means, but I appreciate you telling me. Is that, like, in the middle?
It's I live in Southern Ontario, so near Toronto, if you know where Toronto is.
Yeah. Sure. Like like, North Of New York ish. Like, that way.
Yeah.
Right? Yeah. Yeah. Okay. So Ontario's I I'm feeling a lot of pressure in my mind from the people I know from Canada who are gonna be really disappointed that when you said Ontario, I was like, I don't know where that is.
But okay. So I gotta I don't wanna fast forward too much, but it sounds like you went away to school and something happened. I'm gonna get to that. But first, I wanna understand what it was you know, once you were counting carbs and managing, I imagine you switched to a pump at some point. At some point, you got a CGM.
What what have your outcomes been like throughout this time with diabetes? And, you know, were you having other health issues or other concerns? Anything struggles that were piling on top of the, you know, the base struggle of the diabetes?
So, yeah, I'll start with I did not want a pump as a child. I actually just started on a pump two years ago, so when I was 24. And the reason for that was also just I didn't want anybody to see that I had diabetes. I really didn't want to draw any attention to it. I didn't want to be connected to something.
So, yeah, my parents always wished I would've, you know, been open to the pump, but they didn't force me, which I do appreciate. They didn't force me. And so I eventually decided I wanted to try that on my own. In terms of other things going on and that I struggled with, I would say a lot of mental health issues, the main one being an eating disorder.
Okay. Is so first question would be, do you think you had mental health issues prior to the diabetes, or do you like, when did you notice them first, and and how did it appear? It was my first question.
An Anxious Kid Who Danced17:46
I mean, I was an anxious kid, not like you know, I was, yeah, I was an anxious kid, but really, it was I think it didn't even it was more like body image. I grew up as a competitive dancer as well. Mhmm. And my studio was great. There was no pressure to look a certain way or anything like that.
But you just you spend a lot of time in front of mirrors, and I definitely developed some, like, body image concerns at the time. And that kinda led to a few different things happening, like restricting my food. And then, eventually, I would sneak food and not take insulin for it, not even knowing what like, there was no reason for not taking insulin for it except for being ashamed that I that I ate, like Yeah. An extra amount of food or whatever. And then it was really just through that process that I then discovered, the weight loss that can happen if you're not taking insulin.
And then did you start manipulating your insulin then for weight reasons?
Yes.
Yeah. How about how, old? About what age did that start?
About 15.
Okay. Can I ask you a a backward looking question? Would 26 year old you have told 15 year old you that you you needed to lose weight, or is that just the thing that was in her head?
Oh, that was definitely just the thing that was, yeah, in my head. I was very I would say average. Mhmm. You know?
Can I ask you, like, when you're obviously, I don't have any context being a girl? But when you're in that situation, what is it? Is it is it is it just the way you see yourself, or is it the the contrast between you and the person next to you? Like, what do you think leads the I mean, for you at least? What led to the feeling of, like, the way I am isn't the right way?
Feeling Different19:41
I think definitely comparison played a large part in it. Just comparing myself to people who were smaller, and just feeling like I looked worse or I looked wrong and that I could look better.
Yeah. Compared to like, looked worse or wrong compared to what?
Just compared to some of my peers that were just naturally more lean. And
Mhmm.
Honestly, not even just weight wise, but, like, especially in dance, like, with, like, longer legs and that were taller. I just felt like they looked so much better dancing, and that's not even something I could change. You know? I can't change the length of my legs or whatever.
Yeah.
But the one thing I felt like maybe I could change was to lose a little bit of weight.
Did you feel like you enjoyed dance, or was it torturous?
Oh, no. I loved it.
Okay. So you loved it. It's this aspect of it that brings out this other part of of your thinking?
Yeah.
Okay. When does it become a thing that you're not I I don't know if this is the wrong word. You'll stop me around. But when does it when does it become a thing that you're not in control of anymore? When are you making decisions that are just, like feel like they're autopilot decisions?
Probably, like, pretty quickly. Like, once I especially with the manipulating insulin, once I started doing that, it really spun out of control pretty quickly. And I, for many years, felt like I was so stuck.
And interested in a pattern of I'll keep my I'll keep my insulin low to keep my weight down. And then were you still restricting food at the same time?
I was. I was restricting, but I was also binging and purging. It was really chaotic in terms of food. Mhmm.
How do you figure out how to purge?
I don't actually I've been reflecting on that because I thought that might come up. I I don't know how I how I figured it out. I don't know if I watched some like, I can't imagine I watched something. I mean, I did it for the first time at 13. Social media was only just kind of starting to be a thing.
Yeah. I I don't know. I just I had this idea in my head, and I
Like, I'll get the I'll get the food out.
Yeah.
Yeah. I mean, we could you know what I'm say I mean, obviously, you know what I'm saying because you've been thinking about it. But, I mean, there's one thing to think I wish I weighed less or I wish I looked differently. It's another thing to, like, jump to, oh, you know what I should do? I could just make myself throw up, and then the food wouldn't be in there anymore.
Like, that's a elite. You know what I mean?
Yeah.
Yeah. Yeah. It's and but you don't know where the where the onus came for it.
No. I I really don't.
It's interesting. I wonder if it's just colloquial, like, background noise in the world. Like, you know what I mean? Like, something people say offhandedly, jokingly, or whatever, and it's a thing you hear at some point that you go, oh, maybe that is the way to handle this. Did you ever consider going to your parents at that point?
Reaching Out for Help22:57
I how my parents got involved was I actually initially went to one of my dance teachers because I was just so miserable, and I didn't have, like, the energy to dance. It's not like it was helping my self esteem or my body image issues either. So I kind of confided in her, and she encouraged me to let my parents know what was going on, and she helped me do that. So from there, I let my parents know what was going on. We then, they brought it to my endocrinologist, who then referred me to a eating disorder clinic.
And was that inpatient or outpatient?
I started off outpatient. I was inpatient a few times, would kinda go in, stabilize things, would come out, things would fall apart again. And then eventually, I did I was a they have a day program, so I would go to hospital Monday to Friday every day. And that, you know, helped me get into a good routine.
Yeah. Isn't it isn't it interesting that you can feel shame for a body image reason? And then the step you take to try to impact it, you feel shame for that as well.
Oh, yeah.
But you don't feel good about the body image. You didn't go like, oh, well, at least I traded the shame over here for you know, I feel good on this side now. So you felt like, no matter what you did, I'm imagining, but I'm gonna ask you. Did you ever end up feeling good about your body?
I think I I would say I didn't really. Yeah. Because even when I was a smaller size, I still either the panic was, well, how do I stay this size? Or it was, you know, it's still not good enough. So that feeling of, like, relief never really came.
I never really felt like, okay. Like, I'm good now here or, you know, anything like that.
Oh, that's a shame. And then you said you were in and out a lot of treatment. So it was so is it ultimately not I mean, I don't know what the the the question here is. It's like, is it ultimately not helpful or it's just not completely helpful? Like, why you know, what's the stop and go?
Is it more about the therapy that you need to do around it to make the, you know, make the the push go away to feel the to feel it? I don't understand any of this. So I'm gonna need you to explain it to me. Like, what's the process that gets you to where well, I guess maybe let's do this. I'm sorry.
I'm all over the place now. Where are you where are you right now?
Where She Is Now25:39
I'm in a good place now. I'm I'm doing the best I have in a very long time. Like I said, I'm on a pump now. I'm on
the
tandem, and my a one c is the lowest it's been since I was probably, like, 10 years old.
That's awesome.
I still have goals to get it lower. I'm I'm sitting at around, like, seven or, high sixes, and Mhmm. I'd like to get it lower than that even. But, yeah, I'm I'm in a very good place.
And how about with your relationship with food? Where is that at?
It's pretty it's stable. I you know, I'm I eat very similarly every day, but I can I do allow myself to have treats and not, you know, dwell on it or feel that I need to do something about it? Yeah. I feel like I'm in I'm in a good place.
That's awesome. Now what got you to that place? Like, what what are the steps that really were valuable for you?
I think for me, one big thing, which is really unfortunate, and I wish there was something that had helped sooner, but reaching, like, a rock bottom for me really gave me the push I needed to change things. Especially just realizing, like, in my early twenties, like, how much I was missing out on. Like, I missed my whole grade 12 year. I had to cancel trips. I was taken out of dance.
I, you know, had to drop out of university. Like, everything was just going wrong. I was doing nothing. I lost friendships. And it really just took me realizing that I needed I needed to be the one to change.
Because, you know, when you're a kid, it's a lot of times your parents or your doctors are forcing you into treatment. And sometimes it feels like you're working against them. But then, you know, once I turned 18 and was transitioned into, like, the adult care system, I really realized that, no. I need to take ownership, and I need to be the one ultimately that's gonna make the decision to change.
Start caring about yourself the way your parents care about you.
Yeah.
Yeah. Does that come with maturity or time? And I I think those are two different things. Like, did you have to have enough poor experiences, you know you know, like missing out on school or friendships or everything that it finally kinda piled up on itself, and and you said to yourself, well, that's enough. I don't wanna do this anymore, do you think that you just got more mature and you were able to just see the situation differently?
I think it's probably a combination of both. I mean, I think maturity definitely played a part in it because, you know, when I was 15, 16, 17, even 18, I really had that mindset of, like, you know, everyone's telling me about all the complications that can happen and how dangerous it is to be in DKA, and I just kept thinking, like, oh, like, it it's not gonna happen to me. Like, you know, I'm it's not gonna happen. And then eventually, you know, like, I have neuropathy that's pretty bad, and, you know, I have retinopathy starting in my eyes and kind of just, like, being mature enough to realize, like, no. I'm not a magic unicorn.
Like, these things do happen, and I'm not, like you know? Yeah. They're gonna happen to me too.
Yeah. There's nothing so special about you that the bad stuff couldn't come for you too. Yeah. Yeah. What what were your outcomes like in the beginning that have led to these sorts of issues at a younger age?
The Hardest Years29:24
I my a one c was, for a long time, consistently around, like, 13, 14. There were some years of my life. I was in DKA, like, every two weeks, like, going to the emergency room. Just really, like, my my blood sugars were just so high all the time.
And this was because you were trying to keep your weight down?
Yes.
Okay. Just be yeah. K. Functionally, I'm sorry. This is not a how to for anybody, but are you doing basal insulin but not covering meals?
Like, how do you how do you do it without always being in DKA?
I would my basal insulin was definitely reduced from what it should have been. And then, yeah, I would avoid taking any insulin for food or meals as long as I could. Sometimes, you know, when the symptoms would start to set in of DKA, I'd take some insulin to try and I'd monitor my ketones to try and get my ketones lower. It just yeah. Ultimately, I I always ended up in DKA even though I would tell myself, okay.
This time, I'll I'll do it, but not so extreme that I'll end up in DKA. Like but it never works that way.
Just yeah. Describe that that time in your life. I wanna understand if you thought you were, like, a mad scientist who was, like, just killing it, or were you out of not really the one in control? Like, you know what I mean? Like, were you pulling levers being like, I'm just gonna do this because I know it works out so well, or were you just, like did did the I don't know how to put it, I guess, but did the eating disorder have such control over you that you just weren't making decisions?
I think yes. I think I was not really making, like, in control of my decisions. I think the eating disorder was driving all those decisions. Especially, you know, when you have high blood sugars so consistently, your your state of mind is not always the most logical anyway. And so, yeah, I was I felt out control.
I would try and take a little bit of insulin, and then I would I could swear that I could tell I gained weight just from, you know
From a bolus.
Injection.
Yeah. Was your weight at that point?
At that point, it was pretty low. It was it was under a hundred pounds.
How tall are you?
I'm five four.
Okay. And then where where do you think your body's supposed to kinda sit weight wise?
I would say, like, my probably most natural, like, where I should be is probably around, like, one thirty, one twenty five, somewhere around there.
So is there an argument to be made that you were thirty to forty pounds underweight?
Yeah.
Wow. Did you do have you seen photos of yourself?
Yes.
Are they disturbing to you today?
Yeah. And I don't have many photos of myself at that time, because, yeah, I just I didn't look good. My parents hate seeing photos of that time period. It's yeah. Looking back now, I I I don't know what I thought or what I saw myself.
So let's dig into that for a second without like, I'm not trying to shit on your parents or anything like that. But you've got a one c's in the in the teens, mid teens almost. Mhmm. Do we all understand what that means for your long term health? I know you did, but do they?
Yes. They they definitely did. And my parents at the time I mean, I feel very guilty for what I put them through. My mom was reaching out to, like, anyone and everyone she could because even the treatment places I did go to, they didn't really know how to treat the diabetes along with the eating disorder. They tried a lot of different approaches.
And so, yeah, my parents were very aware of the danger I was putting myself in, and they were so desperate for me to change things. They would try and monitor, you know, through my CGM and things like that. But I at that point, I figured out a way to, like, pack into the Dexcom and make my numbers show lower than it was.
Really? What are you, like, a what are you, like, a little, like, evil genius? What's going on over there, Erin?
The old the old version. I think it was the g five I was able to do that. I I don't think I could do it now.
My gosh. So much effort to because you but it's a it's I mean, mental illness. Right? Is that how
you would
describe it? Yeah. Yeah. Yeah. Were you depressed?
Secrecy and Depression34:10
Oh, yes. I was very depressed.
And so my point is that your parents were trying, but it wasn't obviously, something wasn't happening. So Yeah. Is there hindsight that tells you what they could have been doing? Is there anything that, like, 26 year old you realizes would have been valuable, or is that not even the case?
I think what I've realized is really just I kept things so secret, and I was hiding so much and lying so much.
Yeah. But, Erin, you can't lie ninety pounds five four. That's a Well You know what I mean? Like, you can't lie your way around that. Right?
Did you wear big baggy clothes so they couldn't tell?
I mean, I did do that. But, no, they knew they could tell. Yeah. Yeah. They could tell.
I think, really, the only thing like, I don't know what else they could have done. I think the only thing they could have done was maybe trying to communicate more with me in a way where I didn't feel like I was getting in trouble for having for doing what I was doing. And I think a lot of times, like, some of their concern came across as anger just due to their own, like, worry and fears.
Let me tell you something right now. I've I I have, I've been raising kids a lot of my life, and I'm a fairly reasonable person, I think. And what I'll tell you here, I'm this is for everybody listening. Don't don't have kids. Okay.
Because there's no way to accomplish what you just said. Like like, no your parents could have been mister and missus Rogers. Do you know what I mean? And, like, they could have been like, hello, Erin. It's a beautiful day in the neighborhood.
Look at my skirt. Do you love my sweater? We love each other. I'm worried about your weight. You would have been like, why are you so accusatory?
And, like, like, it's I got kids. I don't I I was a kid. I don't know what it is about human beings, but that's how this works. And and there's something terrible about the way we're wired when we're younger that we're just always trying to be adults on our own, independent. I don't need your help.
Like, there's that whole feeling. Right? It just it it it motivates people. I think all humans. I think the the bigger problem becomes when you layer something like this over top of it.
Right? Even if you didn't have an eating disorder, even if it would have been diabetes on top of it. Right? I don't need your help with this. I can take care of it myself.
Well, your a one c is 13. I can do it. Like, I'm handling it. But listen. My daughter's a one c is in the sixes.
She's doing fantastic. But when she has an issue and I tried to point it out, she goes, I'm taking care of it. And I'm I'll look and I'll be like, it doesn't feel like you are. Like but but what she means is is I'm aware of it, and I am putting the effort into it that I wanna put into it. And the desire that you have for an outcome is not might not match up with, I don't know, like, my my list of priorities.
Right?
Right.
So I'm not unaware of it. I am working on it, but I'm also more worried about this. I'll get to it. And if I don't get to it, then we somehow ignore the health part of it.
Yeah.
Right? Because if it was other stuff, it was cleaning your room, then you could tell me, hey. Well, listen. I'm not prioritizing cleaning my room the same way you are. I'm busy at school or with my friends or something else.
I'll get to it. And if you don't get to it, all you have is a dirty room.
Yeah.
You know? When it's diabetes, all you have is neuropathy. And Yeah. When it's over. And then it gets to the part where you're at now, right, where it's well, I mean, what would you give me if I could take you back and with the knowledge you have now.
So when your parents said you, hey. Can you just, like, give yourself the right amount of insulin? Right? Because you I mean, the person you are now would be like, right on. Let's do it.
Yeah. Yeah. For sure.
Yeah. And so you had to kinda, like, what, experience it and grow out of it? Is that the way you would characterize the whole thing?
Yeah. I think I think, yeah, growing out of it, which is really, though, like, I wish there was a way I wish there was an answer for no. Like, there's a way to change it while like, without having to go through all that. And therapy definitely helped me. I I I've done a lot of therapy, and I've worked with some great therapists.
And
Right. Oh, I I you know what? I've I've done a disservice there. I didn't even layer on the depression and the mental health stuff. Like, I mean, it's just it's all that stuff together like a big sandwich of, like, you know, blurred confusion.
And Yeah.
Yeah. Yeah. So you go to a therapist. How does the therapist get you through it? Is it a process that when you look back on, you can see how she he or she, like, deconstructed you and helped you understand it?
A Therapist Who Held the Line38:55
Yeah. I the therapist I was working with had a lot of, I don't know, for lack of a better word, like, rules. Like, if my blood sugars were very high, then she wouldn't see me for the session. And I really liked working with her, so I started changing things so that I could have my sessions with her, and that really helped me a lot.
She guilted you into it? You have, a, like, a Jewish Catholic therapist? What was going on there? Like, they're you know?
Well, basically, her point was that, like, it wouldn't be ethical for her to know the risk I'm putting myself in and continue seeing me.
But you look back on that. That's bullshit. She was manipulating him to take care of yourself. And good for her. Good for her.
Maybe. Yeah. Yeah. How old were you then?
Like, 18, 19.
Yeah. I probably would've just offered you money. I would've been like, look. Show up with a good blood sugar. I'll give you I'll give you 20% of what I'm making today.
And then oh, wow. So she so you wanted so you wanted to see her because you enjoyed seeing her, because you thought it was valuable, you knew you needed to be saved, and you thought this was the pathway through? Like, why'd you why'd you capitulate and do it?
I did really just enjoy seeing her and having a place to talk openly about how I was feeling about various different areas in my life. It just it felt like a really safe space, and I really enjoyed having that space. So I didn't want to lose it because prior to her, I had gone through about four or five therapists that all met me and then said, sorry. You're too complex. Like, I can't treat you.
That's code for I'm not very good at this, so I won't be able to help. Also, you're interested in this, so I don't know. Whether you're meeting with a polar bear, probably. Right? Like, there's I mean, there's you know?
Yeah. So
What stopped you from doing the other stuff? Like, I'm not hearing drinking drugs. Was any of that going on?
I nothing major. I experimented with things, but, ultimately, no. I just you know what? Being running your blood sugars high all the time does kinda have this numbing effect, And that was god.
I didn't need drugs. I couldn't feel anything anyway. It was all fun. Yeah.
That was you know, that was kind of my coping mechanism.
Right. Right. That's your some of your some of your self soothing came from that.
Yes.
You said you said you were always an anxious kid. You sure you don't have any thyroid issues?
Not no. Not that I know of.
Okay. But but anxiety runs in the family?
It does. Yes.
Yeah. Both sides? Dad's side, mom?
I'd say mostly my mom's side.
Mhmm. Mhmm. Mhmm. I see. What else am I you know, I don't usually do this this early, but what am I not asking you up until now that I should have?
Like, what are you thinking to yourself? Like, dummy. Ask me this. Or not or have we not gotten to that point yet? Am I missing anything?
Because I don't under you understand. Like, I've I've never been depressed that I'm aware of. I haven't had anything stored or I've never had type one diabetes. I wanna make sure I'm not missing any, like, important pieces while we're talking about this.
I don't think so.
Oh, I heard you say I'm doing a good job. Thank you, Erin. This was not just for me to feel better about what I was doing. I actually wanted to make sure I wasn't missing anything. Okay.
So this is all happening. Are you dating through that? No. No. Because you wouldn't have had you had no body image?
Like, you didn't think anybody would be interested?
Yeah. A combination of things. Didn't think anyone would be interested. I honestly wasn't really interested. Just I wasn't in school.
I wasn't really anywhere to meet anyone.
Oh, this treatment had you out of school for long chunks of time.
Yeah. Oh,
I see. Okay. You make friends in therapy?
Yes.
Okay. Are you still friends with them now, or were they, like, were they just a very important, like, teddy bear during that time?
I have some that I am still friends with to this day.
Yeah. Did everybody make it through, or do you are you being supportive of people who haven't figured the whole thing out yet?
Some people definitely still struggle, but I'm still I'm still there for them. They're still there for me in the best way they can.
What, what how would you characterize your life so far? Like, if you had to write a bio about Aaron, like, up until now, like, what would you say?
I would say gosh. I don't know. Just a lot of regrets, a lot of shame, and, like, hiding things that if I was just open about sooner, I feel like could have resolved a lot sooner.
Is it possible for you to do that for me without being yourself? Can you describe yourself like it's not you?
What do you mean?
Could could you step out of your life for a second and look at that eight year old girl and say and tell me the story about her?
Yeah. She she had poor self esteem, and she thought that everyone was judging her. And she just wanted to be accepted and understood.
Think everybody feels that way?
I do. Yeah.
Yeah. Me too. Do you have any idea why it hit you harder than it hits everybody else?
I don't know. I I just I took things to an extreme when I I just I shouldn't have.
Yeah. And and there's no, like I mean, do you think it's chemical? Like, are you do you take medication now for anything?
Medication That Helped45:08
I do take medication. Yeah.
What are you doing? Little Lexapro or something like that?
Wellbutrin.
Wellbutrin? I've heard good things.
Yeah. Yeah. It's been helpful.
Good. Good. That's awesome. Now when you kinda come out this other side and blossom, because that's how I'm gonna see you now, I'm imagining you're the person you were meant to be. You're dealing with health issues, but you're probably also trying to make up for time in the social world and in your education and everything.
Like, are you able to, like, meet that with a positive attitude?
Oh, yeah. For sure. I mean, I I still, like, have a lot of regret. You know, I feel I feel behind a lot of people my age just because I'm just getting back into my undergrad. And, socially, I feel like I'm not where I imagined I'd be at this age.
I'm just kind of rebuilding relationships now and reconnecting with myself and figuring out what I even enjoy.
Wouldn't rush if I was you. I would just I would just do it as if you didn't lose any time.
That's what everyone says.
Yeah. Is that impossible to do? Or I mean, are you reminded all that like, look. As I'm saying that to you, I'm 54. I ran around all weekend going, I'm almost dead.
It's almost over. Like, so fuck. I'm Martin's like, what are you talking about? I'm like, how much longer do you think I could possibly live? Like, maybe I got twenty good years.
And, you you know, and then I was like, Ben, there'll be some at the end, but they're not gonna be fun. I'm pretty certain. And Right. We need to do it now. Like, so I I don't it's funny.
Like, you know, life's finite, and it does make you feel like things are getting by and that things aren't happening quickly enough. But it also seems to me that for you, like, a lot to do with the your stability and mental health would be also to do with not having that feeling. Like, just saying, like, look. I hit a speed bump. I'm on the other side of it now.
I'm just gonna I'm just gonna get back in the race and keep going and not think of it as a race. I'm just gonna try I'm here to finish, not to beat anybody.
Yeah. Yeah. I that's really what I I try to remind myself. I think it just you know, especially being an anxious person, I'm like, I don't have my life figured out yet. Like
No. I'm sorry. Anxiety sucks. I mean, of all the things that I talked to people about over the years, it's really high up on my magic wand list. Like, do you know what I mean?
Like, if I could just make something go away for people, I think anxiety would really change people's lives in more ways
Oh, yeah.
Than we can kinda count. I love when you o yam me like you're Canadian. Thank you. Don't don't forget not to do that a couple more times. That was awesome.
Yeah. I mean, do you ever look at people who aren't anxious and think to yourself, like, how are they doing that?
Well, yeah. I almost feel like, is it even is that even true? Like, is there even anyone who's not anxious? It's hard to believe. Like, maybe some people are just better at hiding it.
I don't know.
Erin, I unless it's about, like, some, like, dire thing with my family, I don't ever feel anxiety.
Really?
Yeah. I I you know what? I had to do I had to. That's not the right way to say this because that's not what I mean. I gave a talk on Long Island out in New York last week.
It was Mhmm. Wednesday. Okay? And it was like oh god. It was three hours of driving to get there.
I was there for a couple of hours doing the thing, the meeting and the greeting and the talking and all that stuff, then about three hours to get home. So I left my house Wednesday. I wanna say 01:00 in the afternoon. I got home around nine. I woke up the next day.
I wanted to be out the door by six, but I'm a little old, I had to keep sleeping. I left at 08:30, and I drove to Tennessee. I'm in New Jersey. So that was about it doesn't even matter about what I got into the hotel room. I left at 08:30 in the morning.
I think it was in the hotel room at 1AM. And then I got up in the morning at seven. I went out and looked at houses with a realtor who I'd only ever met face to face one time. And I looked at a few houses and properties in Tennessee. I spent the day doing that.
Then I drove to Atlanta, got to my hotel, grabbed something to eat, woke up in the morning, did another event for Touched by Type one. I was there for six hours at that event. And then at 03:00 in the afternoon, I was like, I guess I'm just gonna drive home now. Wow. So I started driving home, and then around 10:30 at night, I started getting tired.
So I called my wife, and I was like, I think I gotta stop and get a hotel. I don't think I'm like, I think I've made it about as far as I'm gonna make it tonight. You know? And and she's like, oh, I'll help you find one. And she's like, oh, I got one here for you.
And rooms were sparse. They were a lot of places were sold out. Apparently, was wedding season, I learned later. So, like Oh. Some of the places, like, they're they had rooms up there, like, $900 a night.
I'm like, I will just sleep in the car. I'm not you know what I mean? But my wife's like, no. No. I found one, but it's two hours north of you.
And I was like, okay. And then I just kept driving till I got there. Then I went in. I used the bathroom, went to sleep, got up, took a shower, got back in my car, drove six, seven hours till I was home. I was never anxious during any of that.
I didn't even have a plan for most of that. Wow. Like, that I the plan I had was I was meeting I was meeting a realtor, and I I've never I've only ever been to Tennessee once in my life, and I think I was 10. I just had it in my head that I might like to move to Tennessee, and I thought I would check it out. And since I was going to Atlanta instead of flying, I thought, well, I'll just drive and then check out Tennessee.
When I got home and started talking to people about what I found and what I was thinking, I realized that even just the conversation about moving, even though it was a pretend conversation, made some of the people in my house nervous. Yeah. Yeah. And I was just like and they're like, well, what what would we do? And I was like, oh, we just sell our house.
We just go.
Just like that.
Yeah. And they they were like and they were like, well, what? And I was like, no. Like, I said, I see there's problems. Like, Arden seems to really like her boyfriend.
And, you know, like, my son dates people and, like but I was like, I don't know. Like, we're just working out. So I could think. And I was like, it's like a two hour plane ride to get back here. It's not even bad.
I looked into it. Was like, a one way ticket was, a $110. I was like, that's not even a problem. I was like, we could, like, have this look how nice this house is. And I'm like, I don't think by the way, and I don't imagine this is gonna happen.
But it's a thing I thought about long enough that I felt like I deserved to make see if that was just a thing I was thinking or if it was like a reality. But I don't feel any pressure to make it a real even with me. I mean, you know, as you can imagine, the the real estate person who I was very clear with, and I said, look. I have no idea if I'm doing this or not. I'm like, just you know, if you can give me a few hours to show me around, that would be fantastic.
And but I can't promise you anything. Right? And and then later, like, you kinda get done. You realize, like, it's her business. And she's like, so what do you think?
And she's not pressuring me, but she's she's saying, like, make an offer on this house.
Yeah. Yeah.
And I'm like, no. I don't think so. But thanks. I really do appreciate your time. You you know, like also, I wanna just say this is gonna freak people out, but my real estate agent in Tennessee was former American Idol contestant, Ashley Amber, in case anybody knows who she is.
She's awesome, by the way. Really, really fantastic. I met her on the Juice Cruise last year because she was performing on the cruise. Oh. We bumped into each other.
She told me she's getting out of the performing thing, and she's gonna go home and do some real estate work. And I said, where? And she said, Tennessee. And I said, oh, I was thinking about maybe looking there. And she's like, really?
I'm like, yeah. We talked on the, like, text for, like, six months, and then I just showed up there and looked at houses. I have no anxiety about anything.
Wow.
It's unfair. I have anxious people in my life, and I wish I could just put it all up and give everybody a little bit of it. Because the same way you look at me and think, like, that can't be true, I look at you and I think, god, that can't be true. Like, how is it possible she feels like that all the time? It's it's so unfair.
Really, really. Just I mean, it's your thing to do. You know what I mean? I have other stuff, by the way, that sucks about my life that I gotta Yeah.
Of course.
Yeah. Yeah. But it really is just that I'm gonna forever be interested and and baffled by the whole idea. You know? Anyway, that was a lot of talking.
I apologize. Gave you a nice break, though. Right? Yeah. Yeah.
Yeah. What are you not telling me about that I need to know about? What if people who find themselves in the position you were in before, do you have any homespun wisdom about things that they could, look at to see if they can't get themselves out of their situation or get through it more quickly?
Small Goals, One at a Time54:24
I would say one thing that helped me is really also just setting small goals because, you know, it's easy when you're in that place of struggle to know, oh my god. Like, my a one c's at 13, and it needs to be at, like, five or six. Like, that feels impossible. Mhmm. So one thing that really helped me was just setting small goals.
Like, you know, first, I'm just gonna get into the routine of taking insulin every time I eat. And, you know, then I can fine tune things, and then I can, you know, adjust things even more. And just setting those small goals that feel so much more achievable, and then when you do achieve them, you feel more capable of doing more is really helpful. Because for a long time, I got stuck, like, goals felt too big, and I felt like I was failing at them, and it was discouraging me from trying again.
Yeah. How do you, how do you talk yourself into trying but knowing that it might not go right but it not forcing you back to the start again? Like, what do you what's the grace you give yourself in there to fall short but not fall down?
I think just really reminding myself that trying anything is better than not trying at all, and nothing change like, that cheesy saying, nothing changes if nothing changes. Mhmm. Like, diabetes is so much trial and error. And, you know, I think now, especially, I even find myself comparing to people online that post, you know, their 100% time in range and their amazing a one c's. And, you know, like, good for them, but also, like, I can't compare myself to that because I'm starting from a different place.
I'm going through a different journey. I you know?
Yeah. Also, you don't know what the range is, by the way.
Yeah.
Yeah. I you you know, you could set your range to 0 to 300 and be a 100% time in range. Not too hard.
That's true.
Yeah. Yeah. So I always whenever anybody says I'm a 100% time in range, I go, what what was the range? Don't give me don't give me the sunshine and not give me the sky. I wanna know what's happening here.
By the way, earlier, I said, fall short without falling down. And I thought to myself, goddamn. I could be a motivational speaker. That was good.
That is good.
That was a good clip. Yeah. Yeah. Yeah. Yeah.
I might be onto something there. Want me to write a self help book? It'll be and then be a picture of you holding onto a ladder, but, like, you're you're being held by a belt too, so you can't really fall off the ladder if you let go. It's a whole thing. I'll work it out later.
Look look for my 12 part course. God. Can you imagine? But I it's funny because while you were talking about what I was overlaying in my head is pre ballistic. Like Mhmm.
Because there's an example of a thing. That talk I did in Atlanta, I did a a thing with parents and adults, and then I went later and talked to kids. And those kids were, I I believe I'm remembering correctly, from seven years old to 15 years old. It was like a group of about 10 of them. And whether they were seven or 10 or 15 or adults I saw later in their forties, every one of them says the same thing.
I don't know. How am supposed to remember pre balls all the time? Yeah. Know? And and I spent a fair amount of time driving home, like, trying to think about that.
And it was I I I think what I came up with is that it almost has to be what you just said. Like, don't shoot the moon the the first time. You know, promise yourself you're gonna do it, you know, I don't know, three times this week. Yeah. You know?
Until you can get to once a day. And then once you're at once a day, maybe your blood sugar falls, your stability gets bagger better. Maybe you're not as cloudy, and maybe you've gonna have more space in your head to go for twice a day. Or to be able to realize that if you miss it once, it's not a failure. It's a process.
Like, that whole stuff, like, I think that's just how people learn.
Yeah. For sure.
Your your situation and people in your situation, it's just an exploded it's an exploded version of problems everyone has.
Yeah.
You know what I mean? Yours just look more dire. Is that the right way to say it? Maybe that do you know what I mean? Like, you know you know what saying?
Like, if I don't do my laundry today or fold my clothes, which that might be a real example there, the my my a one c is not gonna go up. Yeah. I'm not gonna need needles in my eyeballs one day. Like, right? Like, like, that so I cannot put my clothes away today if I if I can't get around to it.
And so, thusly, when I don't get around to it, I don't feel like this great sense of shame or failure because, I mean, I don't know. What did I really fail at? Like, didn't get my stuff folded? You you know, it's not a big deal. Those are but those are the way people think and their life life situations that are happening twenty four seven to people all over the place.
It's when this unfairness of this diabetes lays on top of it that you really get into a situation. And then you have body image problems, and then you learn how to manipulate insulin, and then you were just on a slippery slope after that.
Yeah.
Yeah. And your parents didn't didn't know enough to step in, and even if they did, you weren't listening to them. That's the other piece. Right?
Right.
Yeah. Right. My gosh. Being alive is a lot. Yeah.
It's really really is. Yeah. How's the depression piece now? Are you better there?
Oh, yeah. For sure. And I think, like, having my blood sugars more stable really plays a huge part in that. Tell them. Because I I'm not so fatigued all the time.
Like, I I have energy to do things. So it just makes a huge difference in my life that I'm actually able to go out and do something.
Same thing for my weight loss. I didn't realize that about myself. I thought I was okay. Mhmm. But I don't know how much you listen to this.
I just said that like you and I are friends. I'm sorry. But, like, I've lost, like, 70 pounds the last three years.
Yeah.
Yeah. So I have that now too. Like, I wake up in the morning, and it's not just, like, my it's not just my, like, mental motivation because I'm a pretty get up, you know, get up new page, keep going person. But get up new page didn't carry around 70 pounds yesterday with me. Lot more energy.
Yeah. Know what mean? Lot a lot feel feel better. And, you know, I've shared this before, but I'll put it here because you were so honest about it. I didn't think I cared about what my body looked like until it looked better.
And then I was like, oh, maybe I did care. I'm not in a lot of photos either. You know what I mean? Yeah. Yeah.
And this week this last week, I was standing in front of people at all different angles, and people are holding their phones up. And I never once thought, like, oh, don't don't shoot me from that angle. Like, you know, like, didn't have any Yeah. Didn't not you I used to tell people like, you know, if you wanna take video of me while I'm talking, get on the ceiling. Shoot down.
Okay? And now I don't think twice about it. And I saw a video of myself talking, and I don't think about how I look anymore. But two years ago when the process was beginning and I started to lose weight, I one time remember looking and thinking like, oh, I look like everybody else now. And that that was a weird thing.
I didn't know that I didn't feel like I looked like everybody else before. And so your thing's no different. It's just in reverse.
Right.
Like, I actually I actually was not at a healthy spot and believed I was. You were probably at a healthy spot and believed that you weren't. Yeah. Really something, isn't it? You think about having children ever?
Have you met a boy or a girl that you like? Anything like that happening?
I have not. I I think I'd like to be a parent, one day.
Mhmm. Is it a boy we're looking for? Is that right?
Yes.
Yeah? And this boy is not presenting themselves to you? What what's wrong with him?
I don't I don't know. I've just, I've just only started getting back into the, like, social scene. So
So is there an app up there? What's it called Zamboni or something like that? What do you do?
Oh, there's tons of apps. I don't know. I'm not I'm not really I get a little weirded out by the apps. I just don't know that I can trust them.
Well, you probably can't. But what about the what about the emotional support and physical touch part of this? Like, how do you and if this is too much for you, I just realized I'm quite sure. It's just I asked that. So if I don't mean for it to be creepy.
But, like, what, like, what are you doing for those things in your life?
I don't know. Emotional support? I have tons of friends.
Okay. What about I mean, on that. What about the hugs and and that stuff, though?
I mean, I've never really been a huge, like, physical touch person, so I don't really feel like I'm missing out on a ton.
Do you think you're gonna end up being me though at one day going like, oh, I didn't realize that's what it was like, and I was lying to myself a little bit?
Well, yeah, I could see that happening.
Yeah. So what do you do? You're gonna have to jump in. Right? You're have gonna to find a guy that you're pretty sure is not gonna cut your head off and then and then go because that's gotta be a concern, especially in Canada.
Right? And then you I'm just teasing. I'm sure Canada's a fine place. And, and then you, and then you gotta go out and, like, sit and talk and have a meal with somebody and then make sure they know you're not just gonna, like you know what I mean? Give yourself away too easily and then, like, see if they come back and see if you like them enough to go back.
And that's a process in and of itself.
I know. It's it's it's not fun to think about.
Well, but it maybe it would be fun, though.
Yeah. Yeah.
Yeah. Don't
think the right person.
Erin, can I give you a little advice here?
Yeah.
Yeah. I know. It I also, before I give you my advice, let's just everybody say that I understand this isn't how anxiety works. Okay? But you should just calm down and go do it.
Because it's it's it's either going to go well or it's not. Either I'm going to find a hotel or I'm gonna sleep in my car. It Yep. It doesn't matter. I think it really doesn't matter.
It's gonna be fine. You you know what I mean? Like, I'd rather see you go out there and meet a guy and be like, that wasn't for me. Now you have a little bit of instruction. Don't like them that tall.
Don't like it when they talk about this. Like this better. I didn't know I like curly hair. Like, that kind of stuff. You know what I mean?
And then just move to the next one and keep trying. Also, you're gonna be really interested to learn about the people who are initially attracted to you. Yeah. Yeah. Get out there.
You should do it.
Yeah. I plan to.
Good. This summer's a great time. Don't let me press you, but it's getting warm. What's the It is. Yeah.
I mean, this the the permafrost will probably be going in a couple more months. Right? And then the bears will come out. You can go enjoy your life. Is that is that not how all this works up there?
That's exactly how it works.
I know it is. Don't worry. I I I got an all in neck. Also, Erin, you're in my group. Right?
Yes.
Okay. If I look at your profile picture, are you the girl with the glasses or not the glasses?
Glasses.
Okay. May I say something?
Sure.
You're adorable. Go out there and break some boys' hearts. Seriously. Wait till you find out how much fun it is torturing us. My wife seems to be having a fucking party ruining my life.
I think I really think you're gonna enjoy it. Just make some boy love you and then break his heart. It'll it'll take up a whole year. You'll have a great time. It's it's gonna be it's gonna be fantastic.
I I just looked at you and I have a 26 year old. My son's 26. If you were my daughter and I found out that you that you felt like this and you weren't out there, I'd I'd I'd feel, like, a little heartbroken for you. Like Oh, no. Yeah.
Go get him, kill her.
You know
what I mean? Like, get him up there. Is your mom giving you the whole talk about grandbabies and stuff?
No. My, one of my brothers just had a baby, so she's pretty,
Oh, he handled it for you? Bought you some time? Yeah. Do you think about, not that I know you're anxious, but do you think about do you worry about if I had a baby, would it have diabetes?
I do. Yeah.
Where where do you land on that?
I I think I don't think I would ever let that stop me from, like, deciding to have kids.
Mhmm.
But it definitely is something that I'm like, oh. You know?
Well, you know how much you listen, so you were like, uh-oh. What if the kid does that? Yeah. Every time Arden pushes back against me, I look at my wife, and my wife is looking at me, and I know it. She never says it out loud, but she's thinking, that girl is exactly like you.
So, you know, whatever. But but, it's tough. It really is because you you listen. I could I could hit with you all the platitudes and tell you, like, you know, well, you grew up with diabetes, so you know, and you've made all the mistakes. You don't know what to do.
That's all well and good till you say it to somebody, and they go, no. Thank you. Not interested in your opinion. Yeah. Awesome.
Thanks. Here's what I said to my wife the other day. And she agreed with me. I just wanna say this for anybody who's listening. We should not have done this.
That's what I said. I said, do you remember when it was just you and me, and we were just, like, screwing around and having a good time? And, like, she's like and then she goes, how much money we'd probably have if we did not? I was like, I know. Oh, yeah.
Now I don't wanna be without also, when I tried to get my wife to move to Tennessee, she's like, well, I can't move away from the kids. I was like, but aren't they killing us? And she's like, I know, but I can't let you. But I was like, ugh. Damn it.
Oh, I'm stuck. I made these things that I love that are feel no comp comp compunction. Where did that word go? They don't feel any compunction to be kind to me yet. They're not at that age yet.
Not yet. I gotta stay alive long enough for them to apologize to me. That's what I'm thinking. Long do you think that'll be, Aaron? When are you gonna apologize?
Like, ten more years maybe?
Yeah. Maybe around there.
You did say you feel guilty, though, right, about
Oh, yeah.
What your parents have been through. Have you said that to them?
Yeah. Yeah. My yeah. I mean, I've told them, like, you know, I think they did everything that they could at the time or that they could try.
Yeah. You know, that's not comforting to them at all. Right?
I yeah. Yeah. I know.
Not that you shouldn't have said it. I'm glad you said it. But it's they're gonna say thank you, and then they're gonna feel just the same way. People are really complicated in a strange way.
Yeah.
Well, what have we learned from this conversation, Erin? What have you learned from it? Anything, or are you just like, oh, I shouldn't have done this. This guy was terrible at this. What where are you at right now?
Wishing for Something Magical1:09:29
I feel like I just wish I had something magical that would help people get out of situations like this.
Yeah. Me too. Every time I have these conversations do you ever listen to me with Erica when she comes on?
Yes.
Yeah. Yeah. She we go through it, and I have the same terrible thought every time. Like, ugh. But that's probably not gonna happen.
Yeah. You know, do this. Do that. This will help. It's all true, by the way.
Go do those things. They're going to help. And then and but to get the people to do it for reasons like you mentioned, like, either maybe there's medical reasons why they're, you know, a little foggy or low on energy or maybe they're overweight like I was and it's hard to get moving on stuff or whatever is holding you back. It's it it's it's just tough. Like, you need somebody to almost like pull you out of your life, put you in a white room with white walls and white carpet and go, hey.
Look. We got nothing but time here. Let's make a plan and do the things. And Yeah. There's no pressure.
That is the one thing it sounds like happened for you is that the very least you were able to reset, it feels like.
Yes.
You know what I mean? Which I think is sounds like it's been really valuable for you. Because otherwise, if you're trying to fight the fight and fight the other fight at the same time, neither fight gets fought correctly, and you just end up, you know, in these, you know, skirmishes constantly in your life, in your head, in your life, and in your reality. But if you just stop for a second and that's a real benefit. How were you able to afford to do that?
Your parents were supporting you and helping you?
Yes. My parents are a big help, and I am on disability. I work part time. But yeah. I mean, I don't you're probably not familiar with, like, the treatment situation in Canada.
But even that, you know, you're waiting, like, nine months to get into treatment, and it's just
Nine months is the number I hear from everybody. Unless you're dying nine months.
Yeah.
Yeah. And if you get on the list and somebody ends up worse off than you, you slide down.
Yeah.
You don't even get, like, credit for time served on the list. Yeah. Am I right about that?
You know what? That is still one of my questions. They say they don't do that.
But Bullshit. Okay. Yeah. Yeah.
Yeah. Yeah.
Yeah. No. No. No. No.
I I, listen. Socialized medicine sounds nice. There's pieces of it I think are really great, and then there's parts of it like this where nobody's incentivized by money, so nobody hustles.
Yep.
You know? Like, when you need to get paid or you can't turn your air conditioner on, or in your case, you know, thaw out the driveway so you can get to the street. You know, like, it's it's hard to motivate people at their jobs sometimes.
Mhmm.
So yeah. It's awesome. Are you happy you did this?
Yeah. I am.
Yeah. Good. How long have you been listening to the podcast?
Oh, I found it probably back in, like, 2018. I used to listen to it with my mom while we would, like, cook and stuff.
Really? Absolutely. I'm glad I didn't say anything terrible about her now. I would have felt bad if you said that then. But I'm like, oh, I shouldn't have said that.
But, no, I I feel I feel good about the the conversation that we had. And I mean, like, from my perspective, you guys are in a situation. It's of not of your own making, of your own making, of a health related making, of a reality related making, and it sounds like you did the best you could with it. You know what I mean? And Yeah.
It's it's something to be proud of, honestly.
Yeah. I think, I think growing up helps a lot.
Just getting older? Yeah. Yeah. Just doing it because you were able to get, what, old enough to do it for yourself? Yeah.
Right. Because, you know, some people talk about doing it for others. That's pretty common. Like, I had a baby. I wanted to be healthy for the baby.
I got married. I wanted that kind of thing. But you just found a way to do it for yourself, which I think is pretty I almost cursed, but it's pretty great. Yeah. Yeah.
Good for you. Oh, congratulations.
Thank you.
Yeah. It's it's a pleasure talking to you. It really was.
Yeah. You too. Awesome.
Do have any questions for me, or is there anything that I should say that I haven't said so?
I don't think so.
I did it. That's all I heard. Perfect. You did it too. You were really great.
I am going to stop the recording, but then hold on one second just so I can ask you a couple questions before you go. Okay? Mhmm. Erin, thank you very much for doing this. I do appreciate.
You were really transparent, and it's gonna help a lot of people. So thank you.
Thank you for having me.
It was a pleasure. This episode of the Juice Box podcast is sponsored by the Omnipod five. And at my link, omnipod.com/juicebox, you can get yourself a free what'd I just say? A free Omnipod five starter kit. Free?
Get out of here. Go click on that link. Omnipod.com/juicebox. Check it out. Terms and conditions apply.
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#1902 Chicago Eyes
Chicago Eyes
Thirty years with type one, and diligent about it — until an eye exam this year found early diabetic retinopathy. A reminder it can happen even when you're in range.
Jump to a moment
- Diabetic retinopathy can develop after decades even with good control. Svetlana held A1Cs in the high-5s to low-6s and saw her eye doctor three times a year, yet a routine angiogram this year still caught early peripheral retinopathy. It was expected after 30 years, caught early, and is manageable (anti-VEGF injections, laser) — not a verdict on her effort.
- As an adult with type 1, you have to advocate for your own eye screening. Pediatric care watches closely; adult care often stops mentioning it. A dilated exam — and periodically a fluorescein angiogram — can catch changes before you notice any vision problem. Svetlana had zero symptoms.
- Bringing a high A1C down fast can briefly unmask eye changes. Her doctor could literally “see” the drop from ~7.9 to 5.8 in her retina, and rapid improvement is a known reason some clinicians lower A1C gradually. Worth asking your team about before a big change.
- Tools shape the long game. Decades on regular/NPH insulin with a food-pyramid diet, little day-to-day adjusting, and average endos set a different trajectory than today’s CGM-and-algorithm era. Her CGM was the single most life-changing tool — and it took a great endocrinologist to finally push her toward modern technology.
- Afrezza (inhaled insulin) worked beautifully for her — “like a working pancreas” — but her eye doctor found unexplained crystal deposits in her eyes, so she stopped to protect her vision. The cause was never identified. A reminder to weigh a new therapy against your own biggest risks, and that not every reaction has an answer.
- Mental Wellness Series (Erica Forsyth) — Erica’s episode on her own eye laser treatments happened to be playing the day Svetlana was diagnosed (verify slug)
- Bold Beginnings Series — for the newly diagnosed, with Jenny Smith (verify slug)
- Prevent Blindness — Diabetes & Your Eyes — diabetic retinopathy screening and treatment info (verify URL)
- Glucose Goddess (Jessie Inchauspe) — the food-order/glucose book she and her husband use (verify URL)
- Juicebox Podcast Facebook Group — community around type 1 (verify URL)
- Juicebox Podcast — all series and free resources
Every word of the conversation
Meet Svetlana0:00
Welcome back, friends, to another episode of the Juice Box podcast. If you're new to type one diabetes, begin with the bold beginnings series from the podcast. Don't take my word for it. Listen to what reviewers have said. Bold beginnings is the best first step.
I learned more in those episodes than anywhere else. This is when everything finally clicked. People say it takes the stress out of the early days and replaces it with clarity. They tell me this should come with the diagnosis packet that I got at the hospital. And after they listen, they recommend it to everyone who's struggling.
It's straightforward, practical, and easy to listen to. Bold Beginnings gives you the basics in a way that actually makes sense. 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. If you're looking for community around type one diabetes, check out the Juice Box podcast private Facebook group, Juice Box podcast, type one diabetes.
But everybody is welcome. Type one, type two, 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 one diabetes on Facebook. This episode of the Juice Box podcast is sponsored by the Kontoor Next Gen blood glucose meter. Learn more and get started today at kontoornext.com/juicebox.
Today's podcast episode is sponsored by MiniMed, the innovators behind the MiniMed Flex system, a small, sleek, and discreet insulin automated delivery system controlled from an app. Nothing comes close to freedom you can feel. To learn more, visit minimed.com/juicebox.
Hello. My name is Svetlana, and I am 39 years old. And I live in Chicago.
The Metallica Ticket Disaster2:12
And I've just informed Svetlana that she has chosen the worst day in the world to make the podcast with me. So I'm just gonna start off by complaining, and then we'll
move forward. Turn this around, Scott.
Oh, yeah. You're gonna turn this around. My I
hope so.
My brothers and I, who have never as adults gotten together by ourselves and done something, Saved and pulled money together, and we have tickets to see Metallica at The Sphere next year.
We got Amazing.
You would think. You fly out and see the see a concert on Thursday, I believe. And then Friday, you have the day off. On Saturday, you see another Metallica concert with completely different music, and you leave on Sunday. It was almost impossible to get those tickets, but I did it.
And then about, I don't know, a couple weeks ago, I got this email that looked like a phishing email that asked for a picture of my driver's license. And I deleted it. And then one came again as phishing emails do, and I do delete deleted it again. And the third one came. I was like, oh, what in the hell?
Like, I gonna have to, like, block this or unsubscribe? And then I looked really hard at it, I'm like, this might be real. So I emailed their company, Vibe, if anybody's interested in knowing. And I said I said, I'm sorry. Like, this looks fake.
You know? Like, is there a a an account that I've set up that I could log in through to make sure this is real or blah blah blah? But then I got a response back, and they were able to respond with my order number this time. And I was like, okay. This is real.
I'll I'll do the thing. Except my driver's license was was, like, being renewed. And it and I so I was like, oh, I'll just I'll just wait till it comes in. So it did come in a few days ago while, I was away at the ADA helping people with diabetes. That's okay.
And then, apparently, while I was at the ADA, I got an email that said I had, like, seven days or something. And then, you know, I don't know. Anyway, I'm up this morning. I think this is important because it shows that karma is not a real thing. I'm up I'm up this morning making children songs to help them learn about their diabetes at 6AM when I get an email that says, here's your money back.
Your order's been canceled.
Stop it.
Swear to god. So I responded to that email and said, hey. Hey. Hey. Hey.
Hey, Kai. Everybody you know, I don't know what I said. I was like, please don't do this. I dug out the email about the ID verification, sent the ID in because the driver's license downstairs in the counter right now. Also, if I'm in the middle of complaining, so that line of one more second, the state of New Jersey was supposed to use a new photo of me, but instead used a seven year old photo that I'm fat in.
So thanks, New Jersey, and thanks for all of this. It's okay.
No worst state.
So no. No. Mother and so anyway, I then I get a response back from Vibe, and it's Kurt. And I'm like, you know the word? Short.
Not pleasant. And I'm like so I respond back again. I'm like, hey. Like, I sent a note. I'm like, hi.
I don't want my tickets canceled. Like, what are we doing? And all they sent was, like, legalese back to me. I so I thought it was a like a like a an auto response. So I responded back in.
I'm like, can somebody please read this down? Then I can email back. I did read your email. And I'm like, oh my god. So Wow.
Oh my god. Jesus Christ. So then I called and left a message on their machine. So they're like, look. I'm a real person.
I'm trying to get together with my brothers for the first time, and, you had our money. Like, what? You had the money. Just keep it if I don't if I don't send you the ID. Like, what nevertheless, they say they're going to try to reticket them, but they can't promise anything.
And now I have to wait for that. And I also sent a fat picture of myself to somebody I don't know. This is what's that.
Is that is that the part that upsets you the most?
It's hard to it's hard to parse the whole thing. Okay? But and I just had to text my brothers and tell them. So, anyway think
I can do both of karma. Yeah. Yeah. I mean, that doesn't even come close to what you just described to me. I mean, I would just say, let's believe in Carmel.
Let's hope that they will turn this around. You have a pretty compelling story.
Yeah. They don't know me. They they just they think I'm some guy who didn't respond to an email.
But they're reading your emails, though. So I think you should, like, you know, write a longer email about, like, everything you just said to me. Or you already did?
Oh, don't worry. It's it's I I I mean, I shortened it up a little bit, but, yeah, it's there. I I I I, like, low key begged a little. I threw in the part about my brothers because it is true. Do you know I'm 54?
I'll be 55 this summer.
By the time You still have your whole life, Tula.
No. That's lovely of you. By the time I by the time I go to that well, excuse me. By the time I would have went to that concert, I would have been just about 57 years old. And my brothers and I as adults have never gone away together once.
That should have been your email right there. Listen. If they don't get back to you with tickets, you let me know, and I will throw some special legalese back at them, and you guys will go.
You wait. Are you a lawyer?
I happen to be a lawyer.
Oh, well, let's find out about you. This is much more interesting. Okay. Give it to me. When did you get that diabetes?
I'm gonna try to let this go, but my chest is heavy right now, and I don't usually feel like it. I'm not a good No.
I feel for you. That's such a nice thing to do. Like, all your brothers get together like this, and then, like, bad people just, you know,
take it away
from you like that.
Yeah. I'm try I'm not trying to shame. I listen. Apparently, was the email. I didn't do the thing.
But, like, what's the rush?
Yeah. You've got Seriously, what's the rush? And in your defense, they look like phishing emails. They did
the first couple of them. Who asks you for a picture of your driver's license after you buy a ticket from them for a concert?
I would have deleted it. You can't be the only one that has this issue. So we could just, like, round up, like, a class action of all the other people just happened there. You think I've got ideas for you,
we could get Metallica to play in my backyard? What's going on?
I'm not a miracle worker, but, you know, let's say hi. Let's see what we could do.
I I'm not I'm not joking. Like, it was it really was by the way, this is not a cheap excursion.
Oh, I can imagine.
Okay? Like, we we literally had to scrape money together for this. And Yeah. It so it's I mean, what do they think? Like, the the like, I'm not gonna get them.
They've got they've got thousands of dollars of money. Like, they think I'm not gonna get around to it?
Yeah. Oh my Seems unnecessary.
You mean yeah. I'm sorry. What let me start over. I'll slap myself in the face. Hold on.
No. No. You're okay.
I don't I I gotta no. This happened just before you jumped on. It's not
My gosh. It's my Jewish luck. You know, it happens. That's what happens.
Oh, your last name. I can't believe you're Jewish.
Yeah. Yeah. I know. Surprise.
Anyway, tell me a little bit about when you're diagnosed. Let's be honest. Most of us would love to spend less time thinking about diabetes. That's exactly what MiniMed had in mind with the new MiniMed Flex system. It's small and sleek, you can control it from an app, and it uses the trusted smart guard technology that automatically adjusts insulin every five minutes.
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But what I can say for sure is that the Kontoor Next Gen meter is accurate. It is reliable, and it is the meter that we've been using for years. Kontoornext.com/juicebox. And if you already have a contour meter and you're buying test strips, doing so through the Juice Box podcast link will help to support the show.
Diagnosed at Eight in the '90s12:00
Okay. So I was diagnosed when I was eight. So I've had it for about for more than thirty years now.
Mhmm.
And it's so this isn't, like, the cool part of my story or anything like that. It's pretty, like like, standard what we've what we hear a lot. I was a kid. I was sick. I don't know.
I can't remember what I had, and my parents, like, wouldn't know what I had either. I tried asking them, you know, because I was trying to see if it was, with, like, the hand, foot, and mouth or, other common things that tend to bring on diabetes, but I I don't know what it was.
Are you telling me you've asked them recently, and they're like, we don't know.
No. I asked them, like, a while ago.
A while ago.
Yeah. I asked them a while ago, and they were like, what? I I don't know. Who are you? You're our child, whatever.
So, yeah, they they don't remember that kind of history. But I remember it was in April. I don't have the date, but I remember it was in April. I was very sick. Like, I was eight years old and maybe, like, thirty three pounds, like like, severely underweight.
And maybe after, like, a week of, like, letting me sleep on the couch, my mom was like, yeah. We should take you to the doctor. And they tested my blood sugar right away, and they were like, yep. You're going to the ER. So, like, not a super eventful story, like, pretty standard.
Yeah.
This was back in, what, like, 1993, 1994. Yeah. So, you know, spent a week in the hospital, learned how to give injections on an orange, all that you know, learned the old messed up food pyramid when, you know, they bring you, like, cereal, a muffin, an apple, and orange juice for breakfast at the hospital. So, like, had the whole, like, typical experience.
Mhmm. But this wasn't the cool part of your story. That's the part I like. What what the is there there is a cool part of your story?
No. But I guess, like, an interesting part of, like, my diabetes experience of, like, why I want it to be on
the I see.
Podcast. Like, what what I can maybe bring to others through my experience.
Your diagnosis was just pretty mundane and average.
Pretty boring. Yeah. Okay. Unrefundful.
Well, what happened next then? Let's go let's do it that way.
So no. So, I mean, typical teenager. So, I mean, back in the nineties, like, we didn't have I I remember, like, somebody was telling me about, like, the c what would be a CGM and what would be an insulin pot pump. But, like, they weren't you know, I didn't have, like, great endocrinologists. Like, they were okay endocrinologists.
I wouldn't call them sort of, like, diabetes type one experts. Mhmm. And so I I didn't use a CGM or a pump until, like, maybe the last six, seven years. So I was MDI and finger poking until then.
Okay.
Just because I didn't have anyone who, like, really pushed me to it. You know? They're just kinda like, you're you're doing fine. You're doing okay. You know, my I wouldn't say I was doing okay.
Like, my a a one c's were, like, seven or eight. So it's not, like, ideal, not compared to, like, what I have now. But I wasn't, like, being pushed by anyone to, like, not live under a rock until maybe seven or eight years ago when I went to my, like, GP, my my family doctor, and she was like, you know, you really should see this one endocrinologist so I know, like, she could, like, change your life. And I went to see her, and she was kinda like, you know, objectively on paper, you look like a smart person, but, like, you're kind of, like, stupid and not using the technology that's out there.
Decades on MDI, Then a Wake-Up14:53
Wait. So you just kinda came up, though, in a time where, like, pumps weren't very, very common then.
No. They weren't. I remember I don't remember seeing them on people. Like, really, honestly, growing up, I feel like I didn't know that many other diabetics. Mhmm.
I don't remember seeing pumps on people. Maybe I just wasn't looking, or maybe I was just, like, so in my own world about things. But I just, like I I didn't I still don't have, like, any diabetic friends. Like, your podcast is, my community. They just, you know, I think they're all my friends, but they don't know I'm alive.
But, like, I don't really have real in real life friends who are diabetic.
It's interesting, isn't it? There was a a frame of time around type one diabetes where just having an endo who said, you should try a pump made meant they were a great forward thinking endo.
Yeah. Yeah. Yeah. Because mine didn't. Mine would just be like, okay.
Let's, look at your numbers. Okay. We'll try to keep this down or, like, you know, get more exercise. K. See you in a and it's like, here's your prescriptions.
See you in a year. Bye. So, yeah, it's it's crazy now. I mean, I listened to, like, all the parents on your podcast. I'm like, oh my gosh.
They were like, they're so in it to win it. Like, I I just I don't know. I just didn't it that wasn't my experience, like, growing up in the nineties.
So even if I asked you if, like, your parents were trying to help you or anything like that, there was nothing to help with, really.
Yeah. Yeah. Yeah. And I mean so so my my family emigrated from the Former Soviet Union in the nineties, in the early nineties. And so, like, my parents, like I mean, they were just too busy to, like, be sort of all on board.
Like, it was kinda like, we'll we'll work to get you your medicine, and you you you figure it out. Best of luck.
This one needs more than the other ones.
Yeah. Yeah. Yeah.
Do you have brothers and sisters?
I do. I have an older sister.
Does she have any autoimmune stuff?
She doesn't. She's she's lucky. She not not any autoimmune that's, like, visible to us right now, but but we do have diabetes in the family. My my father's mother, so my paternal grandmother, was type one, but she had a, like, later onset in life. Like, I have I have small minor memories of her, like, boiling needles and giving herself insulin.
Wow.
So I I I remember that a little bit back when we still, like, lived in Ukraine, and she passed away very early. Like, she passed away maybe, like, in her early sixties.
Yeah.
And then my maternal grandmother had type two diabetes, but, like, I mean, that was completely, like, I think lifestyles choices
Right.
That brought that on. But, no, we don't really have any other autoimmune that that I'm aware of in my family.
How about you? Do you have other stuff?
I well, we could get to that because I need your professional diagnosis, Scott, here. I've been quite professional, but go ahead. Alright. It's the best I've heard. I'm I'm pretty sure I have a thyroid condition, but, like, not nobody wants to believe me.
I think you will believe me. I think you will agree with me.
Well, yeah, I believe all thyroid. That's what that's the saying, isn't it?
I know. I know. And, you know, so I I in preparation from this call, I pulled my medical records to see what my THS was. And I know you say, like, anything over two. You should get medicated.
Mhmm.
And I I know won't do it. She won't do it. She keeps telling me I'm within the normal range. And so last year, it was, like, 3.84. And this is how sick I am right now.
I'm like, I'm hoping it's gonna be over four. So she finally, like, believes me and, like, will treat me for it. But it's been, like, up and down. Like, there's some years it's, like, 1.74. There's some years it's 2.5.
There's then it goes back to, like, 1.9. So it's, like, not consistent.
Are you symptomatic?
I think so. I think I'm, like, tired all the time, but it could just be that I'm a bad sleeper. But I do think I I I know the list that you usually go to. Yeah. So no dry hair or nails.
That's a no. I do have tiredness. I am tired quite often.
Mhmm.
My biggest one is sort of as I've gotten into my thirties, like, I haven't changed anything about sort of my eating habits or my workout, but I am just like, I am gaining weight for, like, no reasons.
Yeah. Well and and so you tell the end of all this, and what's the answer to that? Like, let's say, okay. It's you know, they're gonna ignore your TSH. She doesn't think it's your thyroid.
What does she say?
She just says, you're fine. You're just work out more if you think you're putting on a few pounds.
What about the tiredness?
She's like, I you're you're an attorney. You might be stressed. You know? It's fine. Just get more sleep.
Oh, no. Oh, jeez. Where did where did they buy that degree at that they have?
No. She's actually amazing. I don't wanna I want How is
that possible? I this I'll say, of all the things that plummets me about making this podcast, if she's not helping you with something this simple, how is she amazing?
She's amazing in other ways. I will tell you that she's the first they're can I talk to I'll I'll I will make sure her
Tell me? Because it feels like you're saying to me, well, he doesn't hit me. Like like so yeah.
So what's going on? I know. This is not sounding well. I know. This doesn't look good.
Let let me try to turn this boat around. Mhmm. So this is the one thing where where we've kind of butted heads, and I haven't gotten my way on is is this, that she's like like, objectively, your test results don't don't indicate to me that, like, you need to be medicated for a thyroid condition. But she has been the first one to actually listen to me. And, okay, maybe this is the part where my story gets a little bit more interesting.
So when I met her that six or seven years ago when she basically called me stupid, and I was like, yeah, I think maybe, like, you're right. You have a point. One of the first things that we did was we went on dexcom. And I still stayed MDI, but I went out of dexcom.com. And that was, like, so life changing.
I agree with everything that you say about CGM. Like, if there's only one tool I could have, it would be the CGM because you could just see things real time. And so that was really cool. And I I didn't love a pump. I didn't love the idea of having something attached to me.
I for some mental reason, I was against it. I remember, like, years before then, a a different endocrinologist tried to, like, put, like, a CGM on me, and I, like, fainted. Like, I had this kind of weird reaction to anything being attached to me. Really? So she wasn't gonna push me to get a pump.
Dexcom, and a PowerPoint for Afrezza20:55
Okay.
And we stayed with the with the CGM. And then, of course, me being me, I'm like, okay. She told me I need to be smarter. So, like, I start, like, just, like, diving in about all kinds of research, and I and I was very intrigued by the inhalable insulin. Right?
Afrezza?
Mhmm.
I think I'm saying is that how you
said it?
Was it Afrezza? Afrezza. And so I was super interested. And then so my my whole thing about, like, using technology is, like, I wanna use technology, but only if it makes my life easier. Right?
If, like, that tub doesn't work well, I don't necessarily, like, want to use it or or if I have to take more steps in a day. Like, with a pump, like, you know, you're constantly putting like like, you have to bolus for it, and you're putting things in, and you're checking your phone. And so I was like, what if I can have a CGM but then use Afrezza as sort of my short acting insulin
and
take once a day long acting insulin. This is Tresiba.
This is the thing people do. Yeah. Yeah. Right.
And so she she's like, I don't have any patients on Afrezza, and so I put together a PowerPoint presentation. I'm like, I really think you should. I should be your patient. She's like, okay. Let's do it.
So she was, like, very open to, like you know, once I made a compelling case of, like, why I wanna do it, she sort of she she helped. And it was it wasn't easy with insurance. Like, you need all these prior preapprovals and all these things. But, like, she she did it for me, and we went on it. And she was, like, so supportive of it, and she was, like, as interested as I am.
And with Afrezza, you know how you have those doses? They come sort of like I don't I don't remember. It was, four
Four eight, Yeah. Yeah.
Yes. And it was too big. Like, if you just want a light snack, like, you couldn't take one of them. So I became one of those people where, like, I bought, like, a little kid scientist, like, kit, and I would, like, break up the doses. So, like, if you didn't know what I was doing, like, you would have think you would think I was doing, like, you know, illegal things.
There's, like, white powders, and I'm, like, breaking them into smaller doses and putting it back in and then inhaling them. And so but she was, like, she was really intrigued that I was doing it, she was like, show me how you do this. Oh, this is how you break the doses. So she's she was really, like, supportive Yeah. Of me finding, like, treatment that worked for me the way I wanted it to work.
And so that meant a lot to me because I'd I've never had sort of endocrinologist take such a keen, like, interest in how I'm managing my diabetes. And so she and she was open to, like, me not wanting a pump and let's try this. Unfortunately, it didn't work out. I had this weird reaction to Afrezza that nobody has been able to explain to me. Like, I've contacted, like, a lot of endocrinologists.
My doctor has contacted a lot of endocrinologists. Can I tell you what it is? Are you do you
Crystals in Her Eyes24:09
wanna know? It's not a cough, is it? It's
No. It's not a cough. It it showed up. My eye doctor was the one that found it. I was I go to the eye doctor, like, three times a year just because, you know, I've had diabetes for thirty years.
I'm OCD about not having diabetic changes. And, like, I don't know, maybe a year after being on this regime of Afrezza and a long lasting insulin, he he, like, looks at me. He's like, we've known each other for a while. Right? And I'm like, yeah.
And he was like, are you can I ask you a question? Are you, like, using drugs? And I was like, yeah. Insulin. Like, I'm a diabetic.
He's like, no. I'm, like, talking about illegal drugs, like intravenous drugs. And I was like, what? He's like, you know, I'm seeing these changes, these crystals in your eyes, and there's sometimes I see this when people are using intravenous drugs. And I was like, like, nonstarter.
Wait. He's he's like he's like, you're not using heroin, are you? That's what he was asking you?
I was like, I we were, like, staring at each other cause we were both, like, not under like, I thought we were speaking different languages
Sure. Sure. To
each other. I was like I was like, you think I'm using like, really, of all That things
bond is high, and you're like, what's this guy talking about here?
Yeah. I was like, of all the things I could do with my time and money, that is not what I would do. And so he's like, okay. Like, I I want you to stop using it because if that's the only thing that you're doing different, like, any new medication, then we need to figure out what this is because, like, these these findings shouldn't be showing up when I dilate your eyes. And so he called my endocrinologist immediately, and she called me immediately, like, all freaked out.
And she's like, don't use it. Like, go back on I think I was using NovoLog at the time. She's like, go back to that and stop using. And so we were never like, know, she called around her contacts. He called around his contacts, and we were and, I mean, I even asked the MannKind representatives.
They said they had never heard of it.
Yeah.
But we were never able to get to the bottom of it. And, like, maybe for, like, two years after that, I was like, can I try it? And they'd be like, no. Like, nonstarter. Like like, the you don't wanna mess with your vision.
But it was I mean, if I
could go have bought it,
it would, like
I'm not having any luck finding anything about that.
Me either, Scott. I I I've I asked my endocrinologist to reach out to So this group of endocrinologists out in San Diego who have done a lot of work on Afrezza, and nobody has ever seen this reaction. But because there was nothing else I was doing at the time, like, that was the only sort of difference, like, objective finding that was different from my last exam. Like, he couldn't rule it out. And he I mean, I'm not gonna risk my vision if it was what caused it.
Checked since then?
Yes. So so the crystals have sort of left over time. They're smaller and smaller deposits of them over time, but that's because I never used it again.
Well, you maybe.
Wait. What do you mean maybe? I didn't use it.
No. No. No. No. Maybe that's the reason there's less fewer crystals, I'm saying.
Like, maybe it's something else. Exactly. Yeah. Like, I mean
It could have been something else. Yeah. It could have been something else, and that's what I'm saying. But, like, I'm not comfortable to sort of, like No. Try using it again.
I I hear you. Yeah. Yeah. Worse. Yeah.
No one had an idea about what like, the eye doctor didn't say
No one.
What else it could be? Why why would
We went through, like, all I was like, here are the vitamins I'm taking. Like, here's this that I'm doing. He's like, no. Nothing other than maybe this is is what could have caused it. So I was heartbroken.
It was, like, the most normal I ever felt because, right, I was just taking in my love Tresiba once a day, and then I would be taking the Afrezza right after I eat. So,
like Yeah.
I would see what I actually ate and then dose for it right after because it worked so quick. It was just so amazing. I I felt like I had a working pancreas.
Did the doctor call this thing ALK retinopathy or embell embolic crystalline retinopathy? No. No. Okay.
No. It was just I think the language used was it were crystal deposits.
Crystal deposits.
Yeah. If you find out the answer and I'm able to go back on Afrezza, I would owe you my life.
I don't know that I wanna be in charge of your eyes. But Absolutely. But I'm just trying to figure out, like, what else like, did the Afrezza bring your a one c way down or your average blood sugars way down? Did it make any No. No.
No. It just makes me feel like
more to Yeah. I had a normal life. I felt just a nor like, you know, I wasn't constantly sort of, like, checking my phone to see how the insulin was or, like, how my blood sugar was doing because it it just worked so quickly. I didn't have as many lows too because the lows would rebound really quickly too.
Mhmm. Were you on any other medications back then?
No. I wasn't using anything else just except my placebo. I know. It's it's I mean, it's like the greatest tragedy of my life.
It's I've you were really enjoying it.
I was really enjoying it.
And there's no indication for what you said here. Like, I can't I mean, listen. No. I can't find using the Internet and half a brain while I'm listening to you talk. I can't find any indication around Afrezza.
No. Something like that.
Nope. Nobody's ever heard of it. None of the other endocrinologists in my doctor's network had ever had patients report anything like
that. It dangerous?
I well, that's what he couldn't tell. He's like, I don't know, but these deposits shouldn't be here. And so, like, if you wanna risk it, you can, but I wouldn't feel comfortable sort of you doing that. And the other thing he said to me is, like, not everyone's, like, OCD about going to the eye doctor and getting their eyes dilated and checked for things like you are. So this could be happening to other people, but, like, they're just not, you know, religiously getting their eyes, you know
Well, I can tell you this. I'm pretty sure someone from mankind's gonna hear this. So
Oh, well
They can reach out. If they have something they wanna say, I can put them in touch with you. Yeah.
Mean, for sure, I would love to hear from them. You know, they they did reach out, like, right afterwards, and, like, I didn't know if, like, I should be talking to them or anything. I mean, I will get I will I mean, I I think it's a great product. I wish it had worked for me. The customer service there was amazing.
Like, the specific rep that trained me on it was incredible. Like, I actually really miss him. You know? Like, we we became friends. Like, he would he would check-in on me all the time because there weren't that many patients on it.
I'm trying to think this was, like, back in 2020. They didn't have as many sort of patients using it the way I was using it. And so he they were amazing. I have only great things to say about them. And like I said, I'm heartbroken that, like, I can't use their product.
They just got their indication for younger people.
I know. I've been following I even remember in 2020 when I first started using it, sending you an email being like, you need to do a topic about Afrezza because it's the best thing ever.
I did a I a fair amount of them too. And Yeah. And I I mean, I found myself thinking last week if this younger indication for younger people if that if the indication for younger people doesn't have Afrezza blow up, like, I I wonder if it ever is going to. Because, again, everyone who I talk to who uses it really, really likes it.
I really, really loved it. But, you know, again, like, my biggest fear in life was, like, losing my vision, so I wasn't gonna mess with it. And if, like, I couldn't use it, then I couldn't use it. And then
Oh, just just just headphone. No. You're fine. It's such an interesting situation to get put into. Like, you don't know that that's what was happening, but it's also too big of a risk that
Exactly. Yeah. What Yeah. Exactly. With your vision.
And so that that's when, like so then I went back to, like, MDI, and then I was like, okay. Let's try because with MDI, you can't, like like, microdose. You know? My I can't, like, do one point two. I have to just, you know, guesstimate what one point two is.
So I did go on the Omnipod, and I do love the Omnipod. I have good I don't have any qualms about it or anything negative. I I I did think that their algorithm is not aggressive enough, so I run my I keep mine in manual mode.
Back to the Pod (Manual Mode)31:47
You see they just updated it?
I did. I did. I saw that in a
little they're enjoying the new lower target and some of
the Yeah.
Some of the changes they made to the algorithm. The new Yeah.
I think I'm gonna try. I think gonna try.
Yeah.
Yes. I think I'm gonna try. I mean, what what it was one time before, so a 100. I'm not I'm not I'm not convinced it's gonna be, like, aggressive enough for me because I'm I'm, like, one of those low riders. I like to be on, you know Yeah.
Yeah. To be on the lower side.
At least unlike your eyes, you could just turn it on and see how it goes.
Yeah.
You know?
Yeah.
Yeah. Just if you're just make sure the settings that you're using currently I mean, well, you're in manual. So if you're having good success, I mean, it would be as easy as flipping it over and letting it run and see what happens.
Yeah. Yeah. I think I am gonna try. I'm I'm gearing myself up to giving it a go.
I can tell you something because this won't come out in any amount of time where this won't be a problem. But I I was on a they made a a commercial to to, like, announce the 100 target.
Mhmm.
It's real and it's really cool if you if you find it. It's it's short. It's, like, thirty seconds long, but it's it's, like, a bunch of actual Omnipod users at a pool. And they're all they're all just sort of, like, looking at each other saying 100, like, to each other. And Oh, that's cool.
And it's it was a lot of fun. And then at the very, very I'm like an Easter egg at the very, very end of the of the the commercial.
You're in the commercial?
Yeah. But so after you get done seeing, like, young, attractive people, then I I come in to balance that all out at the end and make you make you realize the reality of the world. And then Oh, stop it. And then and then it ends.
That's so cool. That's so amazing.
Yeah. It was it was a good time. It was it's weird because it's, like, you know, like, real, like, filming set where you, like, you stand there for nine hours and work for fifteen minutes. But it was it was a good time. I got to see some people I hadn't seen in a while in person and everything.
Joy and I
That's amazing.
Yeah. Yeah. So that's out now. I think it's on their YouTube, but they haven't, like, they haven't used it yet in their social media where they're going to. I guess it's coming.
Okay. I'm gonna look this up when we get off the phone.
Yeah. Yeah. It's it's hilarious. Let me let me just say that the the makeup person comes up to me and says, I'm trying not to completely give it away, but I had to put zinc on my they had to put zinc on my nose. Like, the, you know, the white, like
Oh, that, like, the white powdery stuff?
The cream, like, for being at the beach, like, in the old days. Oh. Yeah. Yeah. So she comes up to me.
She goes, they want me to put, like, a a stripe of, like, zinc on your nose. Are you okay with that? By the way, I you gotta love California. Everyone's always asking if you're alright. Are you okay with that?
Is that okay? And I'm like, yeah. Yeah. I mean, I'm here. Right?
I I Yeah. I said I'd do this. Like, let's go.
No. I think they're legally required. My has, like, all like, an extra law for everything. We actually my husband and I just spent the last three years before we moved back to Chicago in LA. And, I mean, anywhere you go, like, if you if you're in a garage anywhere, there's, like, all these signs that remind you that carbon monoxide could be bad for you.
And you're like, yeah. I'm in the garage. I'm like
Figured that. Thanks. Yeah. So she's like, can I, you know, can I put it on your nose? And I'm like, yeah.
Yeah. Sure. She puts a line down the middle of my nose, and she goes, they want it to be, like, a comical amount. Is that okay? And I went I and I go, yeah.
I guess so. Go ahead. But then I couldn't see myself afterwards. You know? Oh.
And then I saw the commercial, and I was like, well, she was right. It was a comical amount.
I guess that's why she asked okay
four times. What she meant was, now that I'm looking back on it, is it okay if I make you look ridiculous?
Yeah. You're
going
still would have said yes Yeah. If you just said it that way.
You're going to be a clown. Are you up for that? I'm like, oh, okay. Now put this
And you're like, I'm born for this.
Yeah. Now put this hat on and blow this whistle, and let's go, clown. So anyway it and was a great it was really lovely to be invited, actually. Omnipod.com/juicebox. Use my link.
And learn more
Much love. Much love.
Learn more about the Omnipod pod. So you, after all of this rigmarole, didn't end up finding a pump?
No. I I know. It it was all mental. It was it must have been some kind of mental I mean, of course, I got the Omnipod because it wasn't tube. Mhmm.
I think I I wouldn't do well with a tube pump. I just don't like I have this thing about, like, you know, extra things being attached, but I've been you know, part of why I love your group on Facebook so much is you have all these people posting about new places to put your pod because I I run out of real estate. You know? So, like, my legs don't absorb well. I don't like it on my stomach because I I find it hurts more on your stomach.
I find, like, the skin there where, like, the sort of the the cannula is
Not your favorite place.
After three days. Yeah. Yeah. It gets, like, really sore. My hips, again, I don't absorb well.
I think it's because of, like, you know, thirty years of injecting there. There's probably, like, scar tissue, and it just, like, doesn't absorb well
there. I mean, listen. I You gotta trust that your hips don't lie. Yeah. Thank you.
That's right, Shakira. That's right.
That's all I have today because I've lost my goddamn Metallica tickets. That's why
I said No. It's god.
They're definitely
gonna try to be extra funny. I won't try to be extra funny to cheer you up.
I had to go I had to go she hear a dad joke. That's how low I am. Okay.
No. Those are that's good comedy. I mean, that's good humor. We don't we don't want, like, that slapstick humor. That's not funny.
Alright. I and the the dark stuff is really funny. So you can, like, you know I appreciate it. To use your dark humor.
Oh, baby. When you talk like that, we might as well keep going. I could do the whole song if you want. Did she not get in trouble for, like, tax fraud?
Did she?
I don't wanna speak
out of unfortunate. Her.
Hold on a second. Did Yeah. Jakira get found guilty. Oh.
Yeah. Don't wanna have to defend you against stuff.
Making No kidding. Don't I don't even have to pay you. I although I have all that extra Metallica money back, I guess we could
get Yeah. There you go.
I'm on Internet. It's really looking. Look at it looking. I mean, it's not that seriously. Yes and no, it says.
Depends on what case you depends on what case I mean.
For the 2000 lawyer answer. 12/2012,
2014 Spanish tax case, Shakira was not found guilty after a trial. She accepted a settlement plea deal on the first day of the trial in November 2023, accepted the charges, paid fines, and received a suspended three year sentence to avoid prison. For a separate 2011 Spanish tax case, she was acquitted in May 2026. Spain's high court ruled that she was extra sexy and didn't have to pay. How about that?
The tax authorities yeah. Authority had not proven she was a Spanish tax resident that year. Oh. I was like, sounds like Shakira moves around a lot trying to
Good technicality. Mhmm.
Yeah. I'm gonna have to remember that one. Yeah. I ever make enough money to try to defraud my taxes. I'm not up to the effort being worth the squeeze at this point.
Yeah. So anyway Fair. So but getting back to you, I really think that I really think that it's interesting to see somebody diagnosed around the time you were before this technology was available and then becomes available, but it's not plentiful or a thing that people are really doing. You're probably you have doctors who grew up without any of this. They're not thinking to even tell you about it.
Yeah. And then eventually someone, you know, knights you with, hey. Go talk to this lady. She's Yeah. Very forward thinking, and all she said was you should get a pump.
Yeah. Yeah. Yeah. And so and does that make a big difference in your life? Do do you see a night and day difference between your a one c's, your outcomes, how you feel?
Diagnosed Before the Tech39:26
Yes. Yeah. It does.
Yeah. Tell me. But at the same time, I guess the the extension of my question here is the time between when you knew pumps existed and when you actually got one, you were aware of them then but didn't want a thing on your body.
Yes.
Were you were you knowingly making a trade for variability in a one c, or did you not think of it that way?
You know, I you don't think of it that way, or at least I wasn't thinking of it that way. I was like, you know, I'm doing well enough. Like, you know, objectively, I I look healthy. And and, you know, back then, doctors told you, like, a seven or eight a one c was good. Like, that wasn't, you know, that wasn't bad.
So I was like, okay. Like, I'm doing what I need to be doing. You know? Like I said, most people didn't know I had diabetes. So everyone just, like, thought I was, like, fit, active, things like that.
Yeah.
So it never just, like, played and and I didn't have other diabetics around me. So, like, nobody was talking about it. So it just, like, die I mean, I knew I was diabetic, obviously, but, like, it wasn't, like, something I think about every day. I will say sort of now that I'm leaning into, like, sort of your community that you've built, which is amazing and, like, have all this tech, I am more interested on. Like, I'm reading all the time about it.
I'm looking at all of these studies. I'm thinking about all the like, how different the different products are and stuff. But it could also be just because, like, I'm older, maybe it interests me more. And then back then, I was just like, okay. Like, I'm in school.
I'm a student. And then, you know, I'm in law school. I'm starting my career. This wasn't top of mind for me. I'm also reminded of it all the time now because I'm I'm I'm very competitive with myself where, like, I look at my numbers constantly.
Mhmm. Like, you know, all the all the data, all the trends, I'm I give myself, like, a score every week. You know, when Dexcom sends you your weekly report, I'm like, oh, I got an a minus this week. You know? If I'm, like, 91%.
Enjoying doing that?
Yeah. Yeah. I mean, my husband thinks I'm crazy. But, like, for me, like, I'm not competing with other people. I'm just competing with myself now that I have this data.
Yeah.
Until you have it, you just don't think about it. But, like, when you get it and it's right in front of you, then I've taken, like, a much more interest in sort of, like, my diabetes over the last seven years.
Well, yeah, I mean, I can believe that you take more interest as you get older. But is the is it helping you? Like, is the paying attention more digging in, reading about things? Yeah. Can you tell me how that helps?
The Call She'd Been Dreading42:33
Yeah. I mean, I I it kinda leads me to, like, why I wanted to be on the show today. So maybe, like, I don't know, eight, nine years ago, like, on a regular I I always confuse, like, the two different doctors, the ophthalmologist, the optometrist, the app whatever. Just like the one that, you know, checks your reading glasses and your contacts.
The way I think of it is Steve and the other guy. Yeah.
Yes. Okay. So, I'll I'll call her doctor k then.
Okay.
Doctor k and then the other guy. So doctor k is the one that checks my glasses and my contacts. She takes a look, and she's when she dilates my eyes, and she's like, hey. Like, you've been diabetic for a really long time. It might be worthwhile for you to go to the other guy and just for him to do, like, a deeper retinal evaluation Sure.
Just to make sure you don't have things popping up. And so I started seeing this other guy. And this other guy is like, okay. Well, I could definitely tell that you're diabetic, but I'm not seeing any sort of peripheral retinopathy or anything. And your vision has affected your vision or anything.
So, you know, why don't you just come see me twice a year, and we'll just monitor things? And so that's what I was doing. I I went to him I I think I actually went to him, like, three times a year since since that time. And he would just do sort of more imaging of the retina to make sure every once in a while, he would run an angiogram. Do you know what that is for, like, your eyes?
For your eyes? Yeah. Don't think I do.
Angiogram for your eyes.
What do they do there? What do they do with that?
I mean, it's what it kinda what it's as awful as it sounds. It's basically they they they pump, like, yellow ink or a yellow dye into your vein, and then it's it's like, travels through your vessels, your blood vessels. And then at that same time, they're taking imaging of your eyes so they could tell with this yellow dye if there are more vessels forming, which is, like, sort of signs of a peripheral diabetic retinopathy. Mhmm. So every couple of years, he would take those, and they were fine.
And so at some point, he was like, maybe you don't need to see me as often. And I'm like, okay. Like, great. I love you. But, like, if you're telling me everything is good you know, my my a one c's are in the six.
Like, they go between, like, six like, 59And63. So, like,
you know,
I'm I'm doing my best in tore in terms of, like, control.
Of course.
Not a lot of, what, variability too. Like, I think, like, my variability is usually 20 to 25 or something.
Real quick. Were you doing the IV in the arm with the stuff three times a year?
No. No. No. That's every couple of years he would
take it. Okay.
Just because that's another that's just, like, a more thorough look to make sure no new vessels are forming.
Yeah.
So, like, on this last appointment, maybe at the beginning of this year, maybe January or February of this year, I go in to see him, and he's like, yeah. Your things look good. The imaging looks good. But, like, we haven't had an angiogram in maybe, like, four years. Let's just do one to be safe.
You know, I'm overthinking it, but let's just do one to be safe. And so I'm like, okay. Like, why not? Super fun times. So we do this angiogram, and something about, like, the tech in the office.
The angiogram has done is not sending the results to his office. And, like, I'm waiting and waiting. He's like, hey. Just go home, and I'll call you and, like, let you know when we get the results. And so I'm I come home maybe, like, four hours later, and, like, I have a bad feeling now because, you know, like, I I thought it was no big deal, but, like, the fact that he wanted to do it today seemed weird even though he told me everything looks fine, and he's just being overly cautious.
And then I might call our ID. I see the office calling, and I pick it up. And I'm expecting it to be one of his assistants being like, just called to give you the news. Everything's fine. See you in four months.
But I hear his voice.
Ugh.
And yeah. And it was like, I there's only, like, two times in my life I can clearly remember, like, just hearing something and getting physically sick. Like, you're gonna throw up. Mhmm. And this was this was one of the times.
Like, I couldn't talk to him. Like, as soon as he started talking and, like, said something along the lines, like, I'm so sorry we found something. Like, I had to put myself on mute because I was gonna throw up.
Yeah.
And then I took myself off of you, and I was like, I'm so sorry. Can I call you tomorrow? Like, I just I I I'm like, I wasn't sound to, like, listen to what he had to say because, like, it was like that call I've been trying to avoid and work so hard. Like, all these years not Yeah. To get.
And then when I finally did talk to him, he was like, hey. It's more likely than not to have prolo that's what it is. It's peripheral diabetic retinopathy. He's like, somebody who's and the reason why I check you so often is because I was expecting this. Like, when someone has it for thirty years, it's more likely than not that there will be changes, and it's manageable.
There's you can get injections. You can get laser treatments. But, like, up until that point, I had just never heard anyone talk about it. And so I felt like like, WTF. Like, why didn't I know this was, like, a thing?
And why am I the only one who has it? And funny enough, that day, I was listening to your podcast, and you had an episode on with oh my gosh. I'm blanking on her name right now. The woman in California, the therapist.
Erica.
Erica. Yes. I can't believe I forgot her name. She's so amazing. And she was telling about how she had laser treatments for her eyes.
Right.
And I was like, maybe it was confirmation bias. You know? Like, I just wasn't paying attention to it when people talked about it before, but now that it impacted me, I was like, oh my gosh. Now I'm seeing it everywhere. And just hearing her talk about that it would, like, happen to her too and that she had these treatments, I was like, oh, okay.
So, like, it wasn't me who just, like, effed up. You know?
Like, it happened. Would you rather hear that news or this sentence? Vibe has refunded your Metallica two show concert and hotel experience. February 2027 destination. Oh my god.
Which Okay. That is more that nauseous. Ever.
Which made you more nauseous. Okay? No. What no. I'm I'm joking, obviously.
No. No. I mean, it's a close call.
It's a close
call. I don't know. Both are threatening me. That would be the third time in my life.
My brothers and I have a playlist of songs we're excited about.
I know. It's okay. This is all this this will all help bolster that letter that I'm gonna write on your behalf.
Dear sir or madam, who am I concerned? Yeah. Yeah. No. No.
Listen. I if you write a letter, I'm definitely not getting my tickets. They're gonna be like, no.
No. No. No. No. You would get your tickets.
I'm a very good letter drafter.
How often do you do this to get things? Like, do do it at the grocery store when the bags aren't right? Or,
A Lawyer Who Reads the Room49:22
like No. No. I'm not ridiculous.
Of a letter you have drafted constantly that you're like, let me just lay this on you.
No. I'm just, like, very good explaining to people why sometimes what they've done is unreasonable, and they should reconsider.
What what kind of law do you practice?
So I don't even practice law anymore. I work in what we call alternative dispute resolution. Basically, we help people and companies not resolve their differences but not in court.
Court. Yeah.
Yeah. Exactly. Exactly. But I used to be an insurance litigator.
So Oh, wow. That sounds boring as hell. And, like, a lot of, like, a lot of reading is what it sounds like, actually.
There was reading, but I I was, like, a trial attorney, so I got to, like, be in front of juries and, like, you know, try to tell them how my client who is ridiculous isn't so ridiculous.
Oh, wow.
So it was kinda fun.
Oh, you're like the you can't handle the truth, people. I gotcha.
Maybe not as dramatic.
Not that dramatic. I mean Yeah. Is court not like Jack Nicholson and Tom Cruise yelling at each other? I can't believe it.
My gosh. I wish. I wish. But most of the terror reasons are horrible. Like, actually, court is, like, very awful because a lot of attorneys are just, like, bad attorneys, and it's painful to watch them.
Oh, but they're bad at talking.
Yes. Yeah. They're boring and yeah.
Yeah. Yeah. I have to say, I was doing something the other day, and I thought, what a weird skill I have. But as I looked around the room, thought, not a lot of people have this one. They just, like, reach into your head and start going.
You know what I mean?
Yeah. Yeah. Yeah. It's a gift. Mhmm.
Well It's a gift.
You have to tell a story. Not everyone can tell a story.
Yeah. I it's it's crazy. I used to really undervalue it. I used to mean, honestly, I think I probably just felt like if any if I was good at something, everyone must be good at it. You know what I mean?
But that's just bad really a gift, though.
Bad upbringing. That's all.
Yeah. No. I and you do have that gift of being able to talk to people and keep people's interests. And so, like, now I lead a sort of business development team, and I always tell my team, I'm like, don't be boring. Read the room.
Mhmm.
Yeah.
Pim it if nobody's reacting to you.
I came out of I came out of the bathroom. Was going into the bathroom in a public place, and there was a security guard, a female security guard, probably in her mid thirties. And she was doing her paperwork with between the men's and women's room. And I made eye contact and smiled at her and she smiled back and I said, do you know what always gives me hope about humanity? And she said, what?
I said, in public places, the men have to walk farther to get to the bathroom than the women do. And she, looked and she goes, you're right. I'm like, no. I know. In every situation, we make the men walk the extra distance to the the farther bathroom.
I like, was and it makes me happy. It makes me feel like we're still paying attention to small things that are important. Aw. We had a whole little conversation. She's like laughing, and we talked a little bit, and we walked away.
And I was with a person who kinda saw it from a distance and said, what did you what were you just talking about with her? And I told him, he's a younger guy, and he goes, why why did you say that to her? And I said, I like to test my ability to talk to people and make them feel comfortable really quickly. That's all. A little bit.
Yeah. I just like I think it's, like, good practice. Also, I find it really interesting. And who the hell am I gonna tell about that?
Yeah. And I like talking to random people. You always have something to learn from someone too. Right?
I swear. Yeah. Because she talked back, and she she told me some things about you know, she's like, I can't believe I never noticed that before. I'm like I said, look. It might not be every building, but it's most of them.
I think it's it's a chivalry thing, honestly.
I never thought about it this way, but that I'm I will take that. I will keep that with me, Scott.
Yeah. Small thing. Interesting. We won't help you with your reproductive health. No one's gonna look at no one's gonna look into PCOS or endometriosis.
That's not happening. We do have 19 different boner pills, though. And and that's technically for most of you, isn't it? It's probably how they argue about it in the meeting.
Probably.
Yeah. Yeah. We don't help women. And they're like, this is kinda for them. Like, not really.
Not after the first couple times. Right? So on the event, it's sort of,
you know But your bathroom is closer than the men's one. So
Yeah. I like mine better.
There you go.
So okay. So doctor tells you this bad news about your eyes. Yeah. And you finally you pull together and you call. Is there a what do you do then?
Injections, Lasers, and Acceptance53:22
And he's just kinda like, hey. We expected this. Like, we were watching for this, actually. So, like, it's perfect that we caught it at such an early moment. He's like, we are just seeing a couple of small new, like, vessels.
Mhmm. But, like, there's treatment for this. There's injections, you know, what sounds like an injection in your eye, like, fun times. And there's laser treatments, which I am going to go get one relatively shortly. But he said it's manageable.
Like, this is manageable, and, like, we are not gonna lose your vision. Like, your your your a one c is good. You're in control. The and and, of course, like, know, I fact check all of this. I Google, like and I chat GPT, like, for the next three days to be like, was it really more likely than not?
And it was. I mean, the all the data says, you know, after thirty years, it's expected. But, like, I just you know, I always thought, like, I worked so hard to keep my sugars in range and
Yeah.
You know, like
But, you know
things like that to avoid it, to to be that minority, but, like, I didn't do it.
But in the beginning disappointing. The beginning, though, your tools weren't good. Like, what I mean, you're on regular an NPH at one point. Right?
Right.
Yeah. I want So I what I would say is, you know, somebody who was diagnosed ten years ago, I bet you they don't they have a much better chance that this not happening to them. I think if you were diagnosed ten years ago, that twenty years from now, you wouldn't be going through this. I think it really think it's the regular and Miles per hour launch, if I'm if I had to guess. And I don't know what you could have done about that.
I I think that the people who end up getting through the regular Miles per hour days unscathed are probably ones who just were given a heavier dose of insulin. It's probably a you know, because what you weren't really adjusting. Right? You weren't
Yeah.
You weren't really policing for everything you ate, etcetera. So yes.
And the way you were eating back then was, like, I mean, like, the food paragraph. I mean, like
Yeah.
I mean, all those carbs. Like, now that I think after I got the CGM, I never ate a sweet potato again because I saw what it
After the first time it hit you, you're like, oh gosh. That Is what they do?
Go. I was like, not having one of those. And I really I really haven't had, like, a baked sweet potato ever since because, like, now I know what, like, the different foods do to me. So, I mean, listen. Like, I I get it.
Like, you know, I I think I did my best, but it's still it was still disappointing because, you know, I was doesn't I
I'm gonna cut you off. That doesn't help knowing that you did your best, but you weren't prepared with you know, you No. It didn't. I was feel like better? Yeah.
No. I think it made me feel even worse because I was like, well, clearly, it wasn't my best. Right? Like I
don't know about that, though.
Objective findings still show it's like, you know, that one you you start doing crazy things like, well, maybe I shouldn't have let my blood sugar sit high for two hours that one time, or maybe I shouldn't have been having, like, that ice cream and stuff like that. You start doing that, like, crazy thing that you do to yourself.
Yeah.
Like, what is it? Like, the denial phase, the regret phase, whatever the five phases were. Like I No. By the time I came in to see him, injection. He's like, are doing?
I'm like, well, I'm past the denial phase, and I'm into acceptance. So,
like, just I
tend to going through it because I I had about three rounds of injections, and now we just started with the laser. And, I mean, neither one of them are pleasant procedures, but, like, it is what it is. Like, this is the hand of the deck of cards you got handed. Right? Yeah.
I'm at least grateful that now there are these things that you could do to manage it. And he was telling me, he's like, know, we don't really have the injections weren't that good, and the laser didn't do this much until a couple years ago too. So, like, this is
That's lucky.
We have better tools now to manage it too. So, like, in that regard, I feel really lucky too.
Hey. Your voice got dimmer a second ago. Did your hair cover your microphone or anything like that? Hold on a second. I gotta answer this call.
This is gonna be hold on.
Sure. No problem.
Hey, Arden. Go ahead. You're on the podcast, though. Go ahead.
Okay. Well, you blocked me in. I can't leave for the interview.
You can't leave for the interview. Can't you just move my car?
I I have to go. I'm already running late. I need
Sweetie, can John move it or somebody else? Bye. I can't I'm I'm working. You can't leave the house late, say my car's in your way, and I gotta move it.
Scott, you sound just like me. Like, I remember, like, when my parents, like, weren't weren't working anymore, like, full time. And and I would, like, try to do a, like, a family vacation and, like, try to, like, organize the time. And I'd be like they'd be like, well, we're not available these times. And I'd be like, I'm the only one with the job.
Like, like, Like, why didn't you ask me when I'm available? Like, what do you mean you're not what do you do? Give me an itinerary.
I'm guessing what happened was is let me be clear. I went to the ADA thing. I came home. She took my spot in the garage that we have. And so I came home parked behind the garage, and nobody's left the house in a day or so.
And now she's running out the door to go to a job interview, and she opened the door and saw my car sitting there. I mean, move the car.
It's clearly your fault.
Yeah. Clearly your fault.
I don't know what you're confused about.
Yeah. Yeah. Like, I I gotta go. I'm like, well, go. And the idea how That's fine.
I move the other car so I can get out. Like, why?
Yeah. That's funny.
People. Also, she knows in the past if she calls while I'm on the podcast, she's gonna be on the podcast. She knows that. So that's okay.
That's fair. Yeah. But I disclosed it.
I still tolerate. So you've had a few treatments already that you've done the needles?
Yes. I've done the injections. I've done about three rounds of them.
Yeah. How long's how long have you been out that?
So from January of this year, we're talking June. So I I spaced them out about, like, a month or about six to eight weeks apart.
They have be this for, like, six months then.
Yeah. Yeah. But the prognosis is good. He's saying, like, he's sort of seeing you know, it it's sort of stopping any growth or anything like that. And so I'm I'm reacting well to treatment, which is, like, the best thing that could be could have hoped for.
Is this anything you noticed in your vision?
No. Not at all. That's the craziest part. Sorry. You're gonna hear the door open really quickly just because I'm gonna get in the car, but I don't think you'll No.
You're fine. Feedback.
You're fine. Tell people we'll tell people where you're going.
To the eye doctor to get my to get my treatments. I'm so diligent about it. But that's the crazy part that it he found this just by being overcautious. It's not because I complained of vision problems or anything like that.
Right. Are you there? No.
Oh, I'm sorry. You you you
just I wasn't sure if you got that off for a second. Sorry.
And, you know, one of the first things that I said to him too was I I I sort of, like, confronted him. I was kinda trying to tell him that I think he's wrong about me. Wrong. And because, like, I I said, I'm way younger than all the other people in your office waiting to get, like, these treatment. And he was kind of like, what?
But then I was like, like, I don't understand why, like, I'm the only one my age here. And that's where he was like, because maybe you're the like, you're you're abnormal in that you're so diligent about being so, like
Oh, they found it
sooner or about Or
you were younger when you were diagnosed and in that time frame too. You know what I mean? Because if you were ten years older when you were diagnosed, but but it was still the nineties, then you'd be you'd be 10 years old now. So so Yeah. Yeah.
So I don't know. So I think it's great you're doing. I think it's great you went and got checked. Everybody needs to do that, especially because, you know, when when you're a kid and you're going to endo, they look all the time. And then when you become an adult, nobody brings it up anymore.
Well, that's what I mean. Yeah. It's like and, you know, and it was just because he had some kind of gut feeling. He's like, let's just run this extra test because he didn't see anything different when he dilated my eyes. Maybe he just needed a a mile.
Maybe he needs a boat. So he's you know what I mean?
Yeah. He's like, he had to bill something. He looks like an easy one. Yeah. Hey.
Do you
believe there's more stools
in your eyes by any chance? Or you're not gonna Google that if I say it out loud, are you?
I know. Right? It's like I know. So stoked. It's too soon.
It's too soon. I'm still upset that I can't take Afrezza.
What are you doing today? Are you doing lasers? Or
So I'm doing a laser treatment. So one so there's a couple of different ways you could do it. You could do, like, both of your eyes because they found it in both of my eyes, sort of these early peripheral retinopathy. So what you could do is you could do both eyes at the same time, or you could do one eye at a time, because you have to be dilated. And, you know, the the way I am, I'm like, well, what if something goes wrong?
I don't want it to go wrong in both eyes, and then I can't see.
Mhmm.
So I sort of drag out the treatment for myself. I do the eyes separately because I'm too paranoid. If something were to go wrong, I wouldn't want it to go wrong in both of the eyes.
Okay. So it'll just take a little longer this way.
Yeah. It takes a little longer. Base I mean, it was really bizarre. I had my first laser treatment last time, and I didn't know what to expect. But it's basically like like they're just shining right light into your eye for, like, five minutes and telling you to look in certain directions.
And you're like, I can't see. So I don't know, like, what you're telling me to do.
Feel like I'm doing it.
Yeah. I'm like, am I doing it? I have no idea. And
Does it hurt?
Then yeah. No. They numb your eyes. So neither neither the laser nor the injection hurt except for, like, pressure. You know?
Like, you can feel the pressure of a needle going into your eye, but it's not it's uncomfortable, but I wouldn't say, like, you shriek from the pain. Mhmm. And the laser, you don't feel it either because your eye is numb. It's just, like, bright light into your eye to the point where, like, you don't see out of that eye because it's so bright. But it goes away.
Like, once they stop, it goes away in, like, a minute or two.
Yeah. I was gonna say there's no recovery after the laser or anything like that?
Well, it it that's what, like, was scaring me so much the first time I went to do it. Like, they stopped, and I was like, I still can't see. Like, you lied to me. And he said, just give it a minute. Like, it's kinda like when you look in a bright light and, like, your vision gets all messed up.
Like, just give it a and I asked him to stay with me in the room until I could see it.
But it was it's scary, though. I mean, that's
It was scary.
Yeah. There's certain things that are scary. Your vision's gotta be
Is one of
of list. Yeah. Of course.
For me, it's the top of the list. Absolutely. Thanks for understanding how I feel. Everyone is, like, kinda like, it's fine. It's manageable.
I'm like, you don't understand. It's my I I equate my vision to, like, my independence. Like, if if you don't have your vision, like, I would have to rely on other people for, like, almost everything. And, like, that to me is, like, a nonstarter. I can't do that.
I don't know. I mean, it doesn't seem like it's a hard thing to understand that losing your vision would be upsetting. Yeah. Yeah. You know what
I mean? Yeah. Whoever's saying
that is just trying to be positive in the wrong situation. You know?
No. And you've had so many folks on here who have been in that situation, and, like, I find their episodes so valuable, and it's so interesting to hear from them kind of, like, how they deal with it and what their journey has been.
Why It Happens Even in Range1:04:54
Yeah. Me
too. And so and I think where my story was, like, a little bit different is that, like, I just didn't even know that I should be on the lookout for something like this if I was, like, so well controlled. You know what I mean? Mhmm. Like, I was like, you know, if this happened, why didn't it happen during my teenage years when, you know, my a one c was probably higher?
Like, why is it happening now in these six of me on my eight months, it has never been better.
Well, because it takes it takes time to develop. And, also, I have heard stories too about people like Right. Your blood sugars are high for so long, and then when you get them back into range, you know, that everything sort of changes about the pressure in your eye too, and maybe that can expose some stuff as well. You should ask him about that.
Yeah. He did he did say that one time years ago where Yeah. Where I was a little bit higher. Like, my a one c was maybe, like, an eight, and then I got on the I got on the Dexcom, and, like, the next time my a one c was, like, 5.8 because, like, you know, now I was seeing my numbers real time.
K.
And he was like, just out of curiosity, did you did your a one c go down significantly? And I was like, yeah. He's like, yeah. I could see that, but, you know, I could see that in your eye immediately.
No. That's not uncommon. I've heard people say that doctors have brought their a one c's down very slowly on purpose because of stuff like that.
Yeah. So I mean, I didn't think, like, seven nine to, like, five nine was that big of a drop, but I guess it was. Like, it was significant enough for him to, like, ask me about it.
Yeah. Yeah. And he noticed just from looking in your eye too. Right?
Yeah. Yeah. Mhmm. Exactly.
I think you have a good doctor.
He is so good. And, like, I'm so grateful that, like, he's so overly cautious like that as much as, like, you know, now I I was, like, so angry for a while. I'm like, I can't believe I have this and stuff. But, like, he he's right. We found it at the earliest moments, and it's manageable.
And, like, again, this is what it is, and this is what we're gonna do.
Cool. You ever tried writing a strongly worded letter to diabetes, see if it would leave you alone?
Yeah. I write one in my head every day. It has a lot of bad words in it. I imagine that's true.
Hey. Real quickly, do you have any kids?
I don't have kids.
No? Mhmm. How involved is your husband with your diabetes? Does he know because you're you're pretty old school. I bet he doesn't know three things about it, but I'm but I wanna hear what you tell me.
A Husband, and the Glucose Goddess1:07:02
That's so funny and interesting that you say that. So my husband is, the best person on earth, and he has an interest in it. Because I I've dated other men that were just kinda like, for diabetes. What? But, like, he he's very supportive of, like, my very healthy eating habits.
Like, he eats the same way too, and he wants to know everything, like, about my sugars. Like, if he hears my alarms, he's like, do you need anything? But then he's also very into, like, food science with me too. Like Nice. We, you know, we you had this one woman, Jessie.
Can't pronounce her last name.
I can't pronounce her last name either. She
was Dutch. Right? She or Dutch. I think she was Dutch, but I'm
not sure. Yeah.
But we got her book, and we're, like, all into her book about kind of, like, you know, how different foods impact you and how, like, the time of day or what you eat it with and things like that. So we're both into that. And I actually for as a gift for, like, I don't know, our anniversary, I bought him, like, a Dexcom or a Freestyle Libre one time to wear for a week so he could see how different foods were impacting him. I I don't think he's, like, eaten a banana since because he was like, oh my gosh. But so he's very, very supportive.
He he does think I I'm, like, a little too competitive. There's, like, this event in California every year. I think it's it's called some type ugh. I can't remember the name of it. But it's run by a lot of the endocrinologists out in the UC San Diego group.
Okay.
And it's for adults. It's for adults with type one or types two to get together. There's a lot of programming. It's really great.
Nice.
But he says, like, we can't like, I'm not allowed to go to it anymore because I, like, become too competitive. Mhmm. Like, which I didn't realize I did. But, like, he like he just thinks I shouldn't be around other people and, like, trying to find out, like, what their a one c is. Because then if it's, like, lower than mine, then I'm like, okay.
I wanna be just as good. Like, how do I do it?
But, Lana, you became a trial attorney. You don't know you're competitive?
I thought I was competitive with myself, not with others. I was heartbroken to hear that, like, I, you know, give off that aura. I'm competitive with someone else.
My So he
he come to me with with that
anymore. Level of competitiveness is the only thing that keeps this podcast going. Oh, okay. Cool. Because people are always like, how do you make a podcast about diabetes for twelve years?
And I'm like, I don't wanna lose.
Like Yeah. I'm like I like that. Yeah. I like that.
I don't know what it's about, but it it feels healthy. Keeps it keeps me moving. By the way, I just wanna say that Jesse, whose last name in Yeah. Don't know
how sounds
I don't know. But yeah. But she def but but she is from France, and she's French.
She's from France.
That I got right. Okay. So I just want don't know You did. Yeah.
She was interested know why she's She talks
to type twos mainly. Mhmm. Got pretty famous actually for a while. But I I had her is great. Yeah.
I just had her on because she was talking about I like the one thing she was talking about about how to eat in a certain order to change your digestion.
It's toll and not even digestion, but, like, your numbers too. Like, so we we use a lot of her methods, and they work for us. I mean, for me, I don't know if my husband's because he's not wearing a CGM anymore. But she is right about, like, how certain foods impact you.
Yeah.
So I do I found her book very, very useful. I like I like it a lot. Sometimes we'll flip through it for things.
That's cool. Yeah. Listen. I once he's not even the CEO of Dexcom anymore. His name was Kevin, but he came on years and years ago, and he's like, I wore a, you know, a CGM.
I don't have diabetes. He's and he's listed off a handful of foods. He's like, I don't touch these foods anymore. Yeah. Yeah.
After seeing what they did to my blood sugar, I was like, no. Thanks. I don't need this, though.
So Yeah. And it's interesting hearing it from a nondiabetic too because, you know, there's certain I mean, like I said, I've never had a sweet potato since. I don't touch figs or sort of or dates. Oh my gosh. Dates.
I mean, that is just like you just call them diabetic killers. Yeah. I don't know what else to call Well,
they're like sugar soaked in sugar.
It's just sugar. Yeah. Sugar soaked in sugar, sprinkled with powdered sugar, and, you know, inhaled. But, yeah, there's there's a whole other group of things that I it's just not worth it to me. You know?
I thought that you can't eat it. It's just, like, not worth the trouble that it comes with.
You know, when I hear people talk about it that way, what I hear is, you know, I know I can eat it, and I could get through it. But sometimes, I mean, the juice isn't worth the squeeze, and I don't wanna be in
Exactly.
I just don't wanna be involved in this. So I'm like, this
is Exactly.
My line I'm drawing for myself. Don't think there's anything wrong with that Yeah. At all. Alright. Well, we have to let you go because you're probably you're in Chicago.
You're probably to find a place to park your car and walk and the whole thing. Right? Exactly. Exactly. Are you did you get to say everything you wanted to say?
I did. Thank you so much for having me on. And Yeah. Of course. No.
I I just hope that, like, other people know if this is hitting them, you know, in their thirties, they're not the only ones. Like, other people have these kind of findings too and just I know I know it definitely helped me to hear from Erica that day that she had gone through it too because I Yeah. Felt like I was the only person.
I always have that feeling. Always have that feeling. Like, just a person who you think has it together starts telling you about and you're like, oh, that all happens to me too. Then it I don't think to me, that should make you think, maybe I have it together too. Like, maybe I do, and I'm not giving myself, like, enough grace here.
You know what I mean?
Yeah. I'm not in that phase yet.
It's only thirty years. You'll get there. Don't worry. Yeah. That's funny.
Do you do you have can I ask you what advancements are you looking forward to? Like, when you think about, oh, I can't wait for them to do this. Is there something in mind, or do you not think about any of this that way? Oh,
Trials, a Cure, and Paying It Forward1:12:57
no. I do. I'm constantly trying to get myself on those trials and things. Like, I was really interested in the the you know, you had that woman on that did the, the islet cell transplants, but they weren't they weren't human. They were porcine.
Yeah. I don't
know if I'm saying that word correctly.
Right.
I was like, oh, I wanna I wanna do that. So I'm constantly trying to think. It's it is a it is a lot of work finding those studies, having those people reply to you, and then actually qualifying for them.
The qualifying is the hard part. Did
you
try the Eladon study? It's right there in Chicago.
So that's next on my list to investigate. Yeah. So I I do think like, you know, when I was little and the doctors have been like, oh, there'll be a cure one day. Like, after you heard that, like, a couple of times, they're like, okay. Just stop.
Yeah. I guess that's
not true. I think when people say that, I'm more hopeful that that really is the truth. Like, the amount of, like, advancement that's happened in the last five, ten years is incredible. So I I am very positive about the future. And, honestly, at the end of the day, I know this sounds crazy, but I think I personally feel like there are some benefits to having diabetes and that, like, it really made me a responsible, organized person that I don't know if I would have been that way if it wasn't for diabetes that that has shown those skills have shown up in other ways
Yeah. I know you I know what you mean. Had thoughts like
that before. Yeah. Like, I'm very productive in work because I know I have to be organized because, like, you know, I have to make 50 extra decisions today Yeah. And things like that.
Well, having said that, I could've just got you a book about making your bed. It probably would've done the same thing eventually. But I hear I do hear what you're I hear what you're saying. I hear people say all the time, look. I definitely don't want diabetes, but there's been a ton of positive things that have come from it.
And they'll list off of Yeah. A bunch of stuff like that. So if if doctor Wachowski called you and he was like, hey. You're in Chicago. Come on over.
We're gonna jam some islet cells in your liver and give you this infusion. You would do it, Can
you connect me?
Oh, I see. You're ready. I he I think he's right now looking for people who have an ish I forget what it is. Like, you had to be you kinda had to be pretty perfect the first time around.
And now you have to have some some other things. And see, that's the problem with my group, like or me in general. I'm not, like, sort of none of my organs are giving out. Gotcha. But I'm also, like,
not that a problem, but I hear what you're saying as far as getting No. But, you know study. Yeah. Mhmm.
It's a lot of studies. You have to be sort of one or the other. And, you know, I've had it for thirty five years almost. So it's like, I'm not gonna qualify, but I I I would I am more likely than the average person to sign up for a study.
You would do it.
I just I always feel like it's it's part of paying it forward too. Right?
Like I I take that too. And I I usually hear that come from longer lived type ones too. Like, I'm trying to help everybody else too and help myself. Like, so if if if that was the case and you had to every twenty one days get an infusion to keep
that do it.
You would do it. Okay.
No problem.
Interesting.
Even if I wasn't in Chicago, I would do it. Like, I I'm very interested in the science of it too. I I would love to be part of, like, the story of, you know, a one day possible cure. Because, I mean, you have to have people. Otherwise, we're not gonna
No. Yeah. Every time I interview somebody who's done one of these things, you end up thanking them for just for being being willing to try. I'll never forget the woman that was on one time who she had that Vertex paltz. Like, like
I I remember her.
And then they Yeah. And she
didn't even know if she had Yeah. The one or it was a placebo.
And then they were taking it back from her. And I thought, like, she knew going in they were gonna take that back from her. Like, that's a really selfless thing to do. Yeah. You know?
So anyway. Okay. Well, I'm gonna let you go. I hope your appointment goes quickly today. Take yourself out for a nice lunch afterwards and, you know, try to enjoy your afternoon.
Thank you so much.
And I really do appreciate this. Just in case anybody's wondering, before I say goodbye, Vibe has not emailed me back yet. So Oh, man. I still Okay. Okay.
We'll take this offline, Scott.
Alright.
We'll take this offline and get a letter drafted.
Hold on one second for me. Okay?
Okay.
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