#1898 Cat Scratch Seizure
Cat Scratch Seizure
A single mom navigates her son's type 1 diagnosis alongside ADHD, a hypoglycemic seizure, and a school that fought her — and slowly finds accommodations, support, and steadier ground.
Jump to a moment
- What led to diagnosis: months of frequent overnight urination and thirst, unexplained bruising, and a scare that sent them to the ER, where his blood sugar was 416. A family history of diabetes helped Amber recognize the signs early.
- Type 1 is covered under U.S. disability law (the ADA and Section 504). Schools must provide trained staff and accommodations — during the school day, on transportation, and for activities — and every student has a right to a full education. Families can request a formal 504 plan; Amber learned this the hard way.
- ADHD and type 1 interact: high blood sugars can mimic or worsen attention and mood symptoms, and stimulant medications suppress appetite — a real consideration around meals and insulin. Changes to one condition often affect the other, so it’s worth coordinating with the care team.
- Severe lows are an emergency. A seizure or an unresponsive person is a call-911-and-use-emergency-glucagon situation — someone who can’t safely swallow should not be given juice or food. CGM alarms are a critical overnight safety net, and a sensor failure removes that warning.
- The emotional load is real and valid — for the child (anger, wanting to fit in, autonomy) and the caregiver (exhaustion, doing it largely alone). What helped Amber: not forcing, letting him own his devices, watching her language (“I understand” can land wrong), keeping him active, and leaning on community and support.
- Bold Beginnings Series — for the newly diagnosed, with Jenny Smith (verify slug)
- Mental Health & Diabetes Series — with Erica Forsyth; Amber leans on these (verify slug)
- Small Sips Series — short, listener-voted management takeaways (verify slug)
- ADA Safe at School — school rights, 504 plans, and accommodations for type 1 (verify URL)
- Diabetes Pro Tip Series — foundational management series (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 Amber0:00
Here we are back together again, friends, for 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. Have you tried the small sip series? They're curated takeaways from the Juice Box podcast voted on by listeners as the most helpful insights for managing their diabetes.
These bite sized pieces of wisdom cover essential topics like insulin timing, carb management, and balancing highs and lows, making it easier for you to incorporate real life strategies into your daily routine. Dive deep, take a sip, and discover what our community finds most valuable on the journey to better diabetes management. For more information on small sips, go to juiceboxpodcast.com. Click on the word series in the menu. If you're looking for community around type 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. Today's episode is sponsored by the Tandem Mobi system with Control IQ Plus technology. If you are looking for the only system with auto bolus, multiple wear options, and full control from your personal iPhone, you're looking for Tandem's newest pump and algorithm.
Use my link to support the podcast, tandemdiabetes.com/juicebox. Check it out. This episode of the Juice Box podcast is sponsored by the Dexcom g seven, the same CGM that my daughter wears. Check it out now at dexcom.com/juicebox. When you use the offer code juice box at checkout at cozyearth.com, you will in fact save 20% off of your entire order.
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Hi. My name is Amber. I'm a single mom with two kids. My younger 12 year old is my type one, and and I have my 14 year old daughter as well.
Okay. You are a single mom. How old are you?
I'm 37.
37. Do you know that when asked to randomly choose a number between one and one hundred, people most frequently choose 37?
I do not know that.
It's one of those weird factoids that may or may not be true. Anyway, tell me again your kid's age. I'm sorry.
Yes. I have a 14 year old daughter, and then my son, he is 12. He's my type one.
12 with a type one. Gotcha. Do do you know, Amber? Are you nervous? You told me you were nervous before we started.
I am nervous.
You are nervous. So here's why I asked. Because when we were talking before you recorded, you were louder. Oh. And as soon as we started recording, it feels like you stepped back like a half a step.
Don't worry about it. Okay? It's all gonna go great. Okay. 100%.
And if you suck, no one will even notice. I'll go off on some weird tangent, tell a story, it'll be fine. Okay?
Alright.
Sounds good. No pressure for you, and you're not gonna suck. It'll be great. So let's find out a little bit about the background first. Your kid's father or you, any autoimmune issues in your families?
Family History and a Mother's Radar3:44
So my uncle, he was diagnosed just a couple years ago with Hashimoto's.
Mhmm.
Other than that, I don't know of any other Okay. Autoimmune.
Okay. Celiac?
No. I think my my daughter, she does have, like, an intolerance, but she's been tested for celiac, and it's been negative.
Okay. How about you? Do you have anything going on? You have PCOS? You got severe anxiety?
You got anything anything inflammation related even? Not necessarily autoimmune?
Formally diagnosed? No. But I sure do think I have a few of those things going on.
Amber's like, listen. I got the Internet. Let me tell you. I got a couple of those things. What things Yeah.
What what do you what do you struggle with?
Yeah. My hormones are all messed up. I do think I might have some PCOS, and I'm definitely an anxious person. My hypochondria, I think, has helped me, especially, like, through this type one diagnosis, though.
Tell me about that. How did your hypochondria help you figure out your kid had type one?
The Symptoms Before Diagnosis5:07
Yeah. Well, funny enough, it it kind of even goes back towards the summer before he was diagnosed. He you know, I I thought he he also has ADHD, so I was worried that his medication was doing something, like, to his heart and everything because I had noticed, you know, maybe four or five months before his diagnosis that he was he would get up at night, go to the bathroom, and then he'd come into my room and fall back to sleep in my room. And I he would sweat profusely. And I, like, felt his heart felt like it was going to, like, beat out of his chest.
And I was always worried about putting him on medicine for the ADHD. And so I contacted the doctor. The doctor was like, the medicine is not doing that. It should already be out of his system. So, you know, it it only happened a couple times and then it just kind of stopped.
So I kinda just I was worried that he had, like, more of a vitamin d deficiency also because he had bruises on his legs this past summer. Okay. He wouldn't wear shorts or anything either. But so to fast forward, he was diagnosed. It was October of last like, not this past, like, 2024.
And so he had a a dirt bike accident, and he really hurt his back badly. And right after that happened, he started going to the bathroom even more frequently. And I'm I I, like, had conversations in my head to, like, not be overly paranoid about things because, like, even my daughter will tell me sometimes, like, that I want there to be something wrong with her. She's but I just wanna be, like, ahead of things. So I noticed he was going to the bathroom a lot after that, and we had just moved.
And we had a wood burner stove, so I thought, okay. Maybe he's, you know, a little dehydrated. I asked him. He said, oh, yeah. No.
I don't like the water at school, so I'm just drinking more at home. And I'm like, okay. I'm just, like, keeping an eye on it. And then right before Halloween, my mother had taken the kids to a trunk or treat while I was at work. And he didn't feel good that next like, Monday, he didn't go into school.
And my mother happened to I lived with her. I moved in with her right before he was diagnosed. Mhmm. But she had noticed that he was going to the bathroom a lot then too. And she said, you know, do you think that maybe he hurt his kidney or or something with the dirt bike accident?
And I was like, no. But I was worried that it was diabetes.
Say no, mom, but I I do have a long list of other things I'm concerned about, including that I think we're turning the kids into beef jerky with a pellet stove. If I had a pellet stove, I would sit there wrapped in my cozy earth blanket. There is one I have on my I know you think I'm making this up. I promise I'm not. There's this fuzzy heavy, like, I don't know.
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You're working too hard to be laying around on an old blanket that smells like a cat. So
Yeah. Oh my gosh. It does My favorite Mardi Gras story so far.
You're like, I think I was drying them out with a burner. And so your mom goes to kidney damage. Hey. What happened on this dirt bike accident? Did he fall off a roof?
Like, what what what was it?
So he was at a friend's house, but the way I heard it, it it sounded like the other person, like, break a little too fast in front of him, and he, you know, got scared and then he, you know, didn't wanna hit them and wound up breaking. And I think there was, like, a pothole or something.
Oh my gosh.
But yeah. And it was his first time on, like, a a big dirt bike like that. He only had, like, a little electric one. So
So what? He hit his back? Or
Yeah. Right on on the the sacrum there, the the low back. Yeah.
Jeez.
But, yeah, he's still got a pretty nasty scar. And yeah. So my my dad was tested when I was little. I remember he would go to the bathroom a lot. Like, this is also what I was, like, justifying in the summertime.
Like Mhmm. Oh, I guess he's just getting older, you know, getting up and going to the bathroom. My dad heeds a lot. You know? They tested him for diabetes, which is why I knew it was like, a symptom.
That's what got you. And Oh, that's what got you. So if something happened to your father, he peed a lot. They said maybe he has diabetes, and then that's what you started thinking. So let me take you back to because you were doing a good job in this story.
So you and your mom were talking. Your mom's like, kidney damage. And you're like, diabetes. So where do we go from there?
To the ER10:49
Yeah. So I called the doctor after that, and I was gonna set up an appointment. And the doctor's office called me back and said, just take him to the emergency room. So I did. I had to, like, actually, I had to bribe him.
He was like, no. I don't wanna get any needles. I'm like, I'll give you $20. He's like, okay. I'll go for money.
$20 got him. That's that's great.
Yeah. After the fact, he was like, now that I need a lot of needles, are you going to give me more money? So Yeah.
Yeah. Set yourself up there.
Backfired. Yeah.
Now listen. Their understanding of money is different between everyone's. Arden said to me the other day, hey. Because her she has a bank card and it expired. So they sent her a new one.
And she sends me a text last night. She goes, I don't think that my money transferred over to my new bank card. And I went, that's not how that works. I said, what happened was you used up all the money in the account. He goes, oh, oh, okay.
She didn't think the money through it. I hope she hears this one day. It's embarrassing how little you know about money, Arden. I'm trying so hard to teach her, but she doesn't wanna learn. So anyway, so the kid hits you for 20 for the to go to the hospital.
And what happened when you got there?
Yeah. So we got there and I I mentioned, you know, getting his blood sugar checked because I was worried about diabetes, but we were also worried that maybe there was some kind of organ damage. So we we got there. You know, they it it was kind of annoying because they checked his blood sugar, told me it was high. I didn't wouldn't tell me what it was until they gave him the scan.
Mhmm. And I was actually gonna opt out of it because I was like, listen. Is this, you know, you said it's with contrast. That's radiation. I rather, like, just how about we just go the blood sugar route because you said it was high, and he kinda guilted me into, like, doing the scan as well.
And then after that came back negative, they're like, yeah. His blood sugar's 416.
Wait. You felt pressured by the doctor? Yeah.
Started using a bunch of big medical terms, like, what if, you know, there is something, you know, inside, you know, bleeding or yada yada, you know, just
this is to
the point.
Yeah. Yeah. I here's what I heard. Hey. We think your kid might have diabetes, but we also have a reason to suspect that we need this scan, that's enough for us to do it, and your insurance will pay for it.
So why don't we do that?
Yeah. It's pretty much how it went.
Yeah. Yeah. Gotcha. Yeah. How about Check the kid's blood sugar and then if that's not the problem, we'll do the scan.
Yeah. And they had already did it and they, like, didn't tell me what the actual number was and, I mean,
I think I was in
a bit of shock. Yeah. They told me after he had the scan and the scan just came back, you know, that he May I didn't have any damage.
Yeah. Scumbag. You know what I mean? I mean, it covered up. Yeah.
I won't
go to the hospital anymore. I would I would imagine. Agitated by it.
Yeah.
Yeah. Because I I think he had already given my son the the the the contrast. Mhmm. Because after the fact, they just took him right away for the scan, I was like, well, they didn't give him anything. They gave to him already.
That's why he was trying to talk me into it too because he already
Lady, we're halfway there. Let's do it, okay? Yeah. Yeah. Yeah.
Caden Doesn't Want Diabetes14:15
So we had to wait for an ambulance because we had to go to a children's hospital, and they wouldn't let me drive. You know, the doctor told my son, you know, yeah, I think it's diabetes. And that was a pretty devastating moment because Caden, like, looked at me and just started crying like, no. I don't want diabetes. Because funny enough, not funny, I I already knew a lot about blood sugar.
You know, in hindsight, was more of a type two. I would joke with the kids. Joke, not joke. Hey. You know, think of your pancreas when you eat that, you know, like, to kinda, like, give them the self aware, like, you know, this is sugar.
This is protein. You know? Like, healthy food choices. Mhmm. Later on in the hospital, my son jokes like, oh, maybe, you know, your talk about diabetes, like, kinda willed this on me.
And, after I started crying, he said he was joking and he didn't mean it. But Yeah. Great.
Yeah. Yeah. Do do you guys I mean, first of all, Amber, you're delightful. But, like, you know, you said you have a ton of anxiety. Is that a good way to put it?
Yes.
Yeah. Yeah.
Yes. That amplified after children.
I was yeah. Yeah. Well, yeah, that yeah. No kidding. I didn't I didn't have any anxiety in mind amplified after children.
Mhmm. So you do you think the kids have it too?
My daughter definitely has more
How about your mom?
More more blatant anxiety, actually. My mom, I would say she's not as anxious as me.
Okay. Well, is that a high bar, though?
It's a high bar. I mean, I yeah. They would joke about my hypochondria when I was little.
So Oh, so even when you were little, you were always worried something was wrong?
I was worried I was sick. Yeah. I remember one time, like, a dog that I would pass by on the way home from school, like, he was, like, mean. I I I don't even remember, and he, like, licked me. I thought I got rabies.
I was like, oh god. He was rabid, you know, like, you know, paranoid thoughts.
Do you have a OCD or I was gonna say, do you have something like I mean, I don't again, barely got through high school, but do you have something else? Have you ever spoken to somebody?
I I had some tendencies when I was younger. I wouldn't say I have any OCD at the moment. Mhmm. I'm very good at rationalizing my my thoughts. You know?
I kinda, like, wait, gather the facts before I lunge into thinking something is worse than it is.
Like counting or skipping over the cracks in the sidewalks or anything like that?
Oh, there was a time in my life, but no. I don't do anything like that anymore.
Okay. So because you found a way to manage it for yourself. That's what you're telling me?
Yeah. I when I was in high school, I was going through some stuff with, like, my dad, and, you know, there was just some I was having mental health issues trying to, like, manage him kind of not speaking with me. So Yeah. Yeah. He isolated you?
Manifested yeah.
Oh, I'm sorry. Well, it's been a bit of a of a slog so far.
Yeah. Yeah.
Okay. We got the kid here. He doesn't want the diabetes. He gets it. Is this a moment for him?
Does he regress? Is it hard for him? Does that carry into the future?
Yes. It was really hard for him. You know, he even in the hospital, like, we had so many different people coming in to explain different things. Like, no one person could give us, like, all the answers. Oh, that's a question for the doctor.
That's a question for the, nutritionist. So that happened a lot in the hospital. When he was there, there was the tech lady that came to show us how to give injections and all that. And he just kind of was like, nope. I'm not having it.
And he started ripping off the cords and, like, I'm getting out of here to the point they had to sedate him. Is
that is that a common level of reaction for him, or was that out of out of character? The Dexcom g seven is sponsoring this episode of the Juice Box podcast, and it features a lightning fast thirty minute warm up time. That's right. From the time you put on the Dexcom g seven till the time you're getting readings, thirty minutes. That's pretty great.
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No. He's he's yeah. He has reactions like that. He's He's
Oh, Amber, you got you got you got sad. What happened?
ADHD, Meds, and the Hard Year21:22
Oh, well, I mean, this past year and a half since he was diagnosed has been a challenge. But even before, diabetes, his ADHD has been so bad that it it also caused, like, a lot of issues, school especially. I never wanted to put him on medication, but eventually, I did. My my uncle said, you know, what's worse, the potential side effects of the medication or what's happening to his, you know, emotions and everything by not being on the medicine.
What was what were some of his symptoms? What was happening?
Well, he just couldn't focus on the schoolwork. He was acting up to the point where I was getting called every every other day. He was getting suspended. They put him in a a program for kids with behavioral issues. This was at his old school, which these kids already had behavioral issues.
So he learned terrible behaviors, like, and how these kids were acting. So he acted even worse because he saw other kids acting up. I wound up putting him on medication and all like like a light switch, he was able to sit, do his work because he would have the behaviors to get out of school because he couldn't focus on it. Mhmm. Which even so after he came home from the hospital, he's two weeks into a new school.
I like, we need to have a meeting with his history of behavioral issues and ADHD along with this diagnosis. We need to have a plan in place. And because he's, like, half an hour from our house the school's half an hour from our house, so I I needed to make sure that he was going to be safe on the van. He drive he's on a van. He doesn't take the bus, you know, safe in the school.
So Well
I yeah. What medication did they put him on?
He's on methylphenidate.
And that just you're saying, like, a light switch. You mean one dose or one week or one month? How did
It it works instantly. So, like, you know, you take it that day, it works that day, it wears off that day, you know. And but the thing with the the ADHD medication is it suppresses his appetite. So when I told his doctor, the doctor said, you know, maybe high blood sugars were causing his some of his ADHD symptoms. That does happen.
So we decided to take him off of the medication after diagnosis to see if, you know, because we were worried about falling blood sugars at There that was no pump, you know? Suppressing his appetite was a big deal. Mhmm. And so we did take him off the medicine and so that was
Half Days and the Fight for Accommodations24:32
yeah. Was that a mistake? It
was a mistake. Mhmm. But I also think that the school was worried about him. They wound up saying, hey. How about we just put him in school for half days so he could adjust to this new diagnosis?
So that wound up happening all the majority of last year. But even with, like, getting any type of accommodations for him, I really had to fight the principal even last year with that because he was like, no. The nurse is enough. This is fine. This is how we've had other, you know, diabetics.
I'm like, yeah. Well, they weren't, Caden, and I wanna know, like, if the nurse is, you know, unavailable. Like, the the high school and the elementary are right across from one another. Sometimes the nurse if one of the nurses are out, they're, you know, subbing between schools. So I really had to push just to get some training done after getting the super superintendent involved.
He was like, yeah. Of course. So we got the van driver tested, which, honestly, we had to switch van drivers because the original van driver was like, I don't want that liability. Really? So we switched van drivers.
The one he has now is lovely. He got trained and then a couple people in the school also got trained.
Very nice.
So I felt a lot better. Mhmm. And and then he was doing half days, but the entire time, I'm they're calling me all the time. Like, you know? Yeah.
You have to come get him. He's having a low blood sugar. You have to come get him. You know, he's acting up. And I you know, it wasn't as bad last year as it was the beginning of this year, but it it was just Hey.
Did they when he gets Terrible.
When he gets a low blood sugar, do they not help him? Why do you have to come because he has a low blood sugar?
He would refuse to treat it sometimes. This was more of an issue the beginning of this school year, which, led to me having to get a lawyer and everything.
For what? What'd you need a lawyer for?
Well, I had to get two. First off, one was because the school so in hindsight, I found out that there was a bit of discrimination going on against him, like, with some programming. Like, there was a summer program that they told me, oh, you know, we don't have a nurse on staff. We don't have a a driver to get him here who's trained in, you know, diabetes. Mhmm.
So, like, I don't know how we would manage that. I offered myself to drive there and sit in the parking lot for that summer program. Same with these after school activities, the intramurals. Again, the nurse leaves. We don't have a nurse here.
There's you know? So I I was, like, offering to take him and and stay there, and, you know, I was like, I don't want him getting resentful of his his diabetes. You know? I'll do whatever I have to. You know, in hindsight, after I get the lawyer, I find out that they are supposed to accommodate him.
Mhmm. I guess I I didn't really think of his type one as, like, a a disability. You know? Like, I guess when I thought of disabilities being disabled, it was more you can't see, hear, You know? Yeah.
So I didn't even think of it in the sense of, like, you know, he falls under, like, the American Disability Act and things like that. But so I feel like I need to breathe.
Yeah. Take take a second. Really. I mean, it's it's obvious it's obviously a lot. Like, I'm I'm I'm struggling between not wanting to interrupt you and trying to help you by interrupting you, so I'm not sure where to go sometimes.
Yeah. Wow. I mean, gosh. Is the father helping at all? Is anybody helping you?
Their father hasn't been involved ever, pretty much. Okay. So no with that. For help, I really don't get too much help, to be honest. It it's really just me.
You know, on occasion, my mother will help if she's around, but she's kind of been off doing her own thing for the most part that's neither here nor there. Yeah.
Well, I'm just saying, it's you know, you got two kids and they're struggling. You have some struggles of your own. You know? It's it's definitely a lot. I I don't have an answer for you, but it feels like it feels like it would be valuable if somebody could, you know, step in once in a while and offer you a break.
Do you get do you get a break? How do you find time for yourself, or are you not able to?
No. There's really no breaks. It it's been a lot better now. I will, like, say that the beginning of the school year, it was a pure nightmare, but things, like, have really settled down. He's in school.
I'm not worried about him, you know, anybody calling me. The it it's gotten so much better. Better. After I had to get lawyers involved. Well, let's even go back, like, two weeks before schools.
Caden didn't want to do the summer program. Honestly, we went to one day of the summer program, and I got anxiety just seeing the school. We were feeling so much better. This was, like, July. And then I realized, like, oh my gosh.
The school is stressing me out even just seeing it, just thinking of, like, everything we went through the year before. And I decided, I'm like, Caden, if you don't want to he's like, yeah. I don't want to. So he didn't do the summer program. Mhmm.
But two weeks before school even started, he this was happening last year too. He started getting stomachaches. I was, you know, slightly paranoid that he had something to do with with his diagnosis. I'm like, oh my gosh. Is this anxiety, or is this, you know, some kinda
The slower digestion or something. I'm like,
oh my god. Is that possible?
I I was assuming you would jump to that. Yeah. Yeah. Yeah. No.
I I did. I did. But, you know, again, I I talked these crazy thoughts out of my head and try to rationalize things. But, you know, the whole summer, he wasn't having any issues with his stomach. Two weeks before school, he's already starting to complain.
And the first day of school, he was so anxious, he threw up. Well, he wasn't sick at all. I knew it was nerves.
Mhmm.
And so in between him, like, he started getting in trouble at school, but then also he would not wanna go because his stomach hurt. So that was happening quite a bit. Now fast forward to this past November, it was right before his birthday. He had a low blood sugar and like they would always do, they would, like, use me. Like, you better eat something or I'm calling your mom was kind of what was happening a lot.
The Security Guard Presses Charges31:48
That's a shame.
So the school principal, you know, put a security guard in charge of Caden. And the security guard, you know you know how they can be, like, trying to kinda strong-arm him. Mhmm. You need to eat this, that, the other. Caden winds up telling me, like I guess he wanted to get out of the nurse's room, and the security guard kinda, like I'm sure he just put his hand out.
Caden swears that he'd tried choking him. But, again, he was having a low blood sugar. So Right. The whole thing escalated quickly. I, you know, I bring him home.
I a couple days later, like, that was, like, a Thursday, they suspended him. He comes back to school the following week. It was actually his birthday. I the only way to get him to school, I was like, listen. Let's just try half a day.
So I wind up picking him up early, and the security guard comes over to me while I'm waiting for my son. And he's like, yeah. You're Caden's mom. I'm like, yeah. Okay.
I just wanna let you know I'm pressing charges after what happened last week.
Wait. The security? Guard said this?
He the security card said this. I'm like, wait. Come again? And I I I kinda just, like, stared, and I think he was hoping I would give a reaction. And he repeated himself.
I'm pressing charges. Your son threatened to kill me. And I was like, what? What? Excuse me?
He's like, yeah. He threatened to kill me, and he was getting, like, he was raising his voice. He was kinda like leaning in towards me. You could tell he was agitated and trying to get a rise out of me. Mhmm.
And I'm like, do you have any formal training in, you know, medical or mental health emergencies? He's like, no. He threatened to kill me. And I was like, well, when you're having a low blood sugar, you can't really, like, control some of the things you say or do. But, you know, you do what you have to do, and we'll just go to court for it.
So after that, I called the principal, and I asked the principal. I'm like, did Caden threaten to kill him? And the principal's like, oh, I know he threatened him. I don't know what he actually actually said, but I heard him threaten him. I'm like, you heard a threat, but you don't know what the threat was?
Like, okay. That makes sense. And I could just tell that the principal was he wasn't answering specific, like, specifically.
Where they where they hired the security guard from, by the way? Wait. Wait. I
don't even know. I it a big thing. I but I wound up I wound up having to, like, find a lawyer because of that. And I thought I was just going to hire a lawyer to go to the magistrate because, you know, like, a week or so later, I get a letter in the mail. They filed disorderly conduct charges.
In the the report, it doesn't say anything about, like, threatening to kill him. It's very vague also. And I even asked Caden. I'm like, did you like, what happened? And he even to this day, he insists that he he tried choking him.
I I think that he did have his hand out and, you know, Caden was, you know, running into it. I'm sure it could have been by his throat. Neither here nor there, Caden did not threaten to kill him. That never came up again in conversation. It wasn't written on this, you know, the incident report.
But but
I I even said, like, I was looking into it. If you threatened to kill somebody at a school, you could get ex
Expelled?
Expelled. You know? So I I 100% don't believe that happened. I tried to get camera footage. Nobody would give me camera footage.
I didn't know what like, I don't know anything about lawyers. So I went to my mother suggested going to the Center for Independent Living. They help people with disabilities. They're like, okay. We we don't help kids, but, you know, I can make some phone calls and see who I could find.
And then they found oh gosh. The I forgot what the name of the lawyers to help educational law firm. The educational law firm. So I talked to them. They tell me that I certainly have a case and that they couldn't take it because they had too many cases.
But they gave me a list of other lawyers and a whole bunch of information in case I didn't go the lawyer route, about, like, Caden's rights and things like that. Very helpful stuff. But, I still wanted to get a lawyer because
What's the frame of time all of this has happened in?
The pay front. It was
It's, like, the last year and a half?
Yes. Yeah. This was just a few months ago. This was started in November. I wound up finding the lawyer in December.
I started putting Caden back on the medication too because I had a meeting with the principal because of this incident, and I thought to myself, I'm like, wait a minute. You know, he was trying to get out of schoolwork years ago. This is familiar despite the diabetes, and I said, you know what? I think he needs his medicine again. Mhmm.
I put him back on the medicine, and, again, night and day, all of a sudden, he's not complaining of stomachaches. He's going to school every day. I'm not I'm I'm still getting phone calls because I swear that they were trying to find more reason. They were worried.
I was gonna say they probably hate his gut they probably hate his guts by now. You know what mean? Yeah. But you're you're you're involved in a blood feud at this point.
Well, honestly, I even didn't put him in school for, like, two weeks after that because I was worried. I'm like, I can tell you're all lying. I don't wanna bring him to school, and you make something up to get him into more trouble, you know? Mhmm. So, you know, you need to put your kid in school.
Now I'm getting truancy letters, and I'm like, okay. I've put him back in school. I'll just hold my breath. I get the lawyer. I had to, like, get every email, every, like, voicemail, every letter, send everything to the lawyer.
The lawyer accepts the case. She in hindsight, I kinda wish I got a different lawyer. It was like, I put all this work in, like, six weeks of gathering paperwork, and then she's like, yeah. I'll accept your case. You know, you need to sign this.
And this whole time, I'm thinking it's free because that's what the education law center told me. And she's like, yeah. Well, if you you know, it's free unless, you know, you cut out early and decide not to finish up with the case or, you know, any money that my son might get, I'm gonna take, like, 30% of that. I was like, what? Like, oh my gosh.
But I decided to still go through with it because I put all this time into giving her all this information, and I didn't wanna take any more time away from Caden getting help at the school. Yeah. I So, you know, I and then she told me she's like, yes. I'm I'll I'll help you with this, but you also need to get another lawyer. Like, I I don't do anything with the magistrate, so I wound up getting another lawyer to go in front of the magistrate for the whole security guard thing.
And
Can you just go somewhere and start over? Have you ever thought
of thought I was doing moving To
your mom's.
Moving here.
Yeah.
Yeah. Well, to backtrack, this past September, Caden had a seizure
From a low?
Children and youth got yeah. It was a low blood sugar, and children and youth got involved because of it. I didn't even mention, like, how angry he was after the diagnosis. There was a lot of emotions going on.
Yeah. Sure.
A lot of holes in the walls. Hard time accepting. Like, even in the beginning, he didn't wanna eat certain things. Once he got his insulin pump, he started feeling comfortable eating again. But then that was the other thing the school was doing.
They were so up in his business with things. You know? I need to see how many carbs you had. I need to see what you ate. The lunch ladies are watching him, calling the nurse, telling them what he ate, you know, things like that.
But so back in September, he we were having an argument. I don't even remember why he got mad. He ripped his Dexcom off. I went in my room because my mom was like, I'll I'll help him. I'll put another one on, you know, we'll we'll take care of this.
Because I was just like, I can't I can't with this boy right now because I've also been going on very little sleep since all of this. So after, you know, a couple weeks of interrupted sleep, I I was exhausted. It was right before bed too.
The Night of the Seizure41:16
I hear you.
And I didn't put my Sugarpixel on, and, you know, they put a new Dexcom on and it had an error in the middle of the night, some error I've never seen before or again, and it stopped working. And he you know, it was just giving him his basal insulin. And and that was, like, for three hours in the middle of the night. And so my mom like, I didn't hear any alarms. I was sleeping through everything up.
But it was around 06:15 I woke up, realized, oh my god. Slept through the night. Running to his room, and he just seemed kind of out of it. I just automatically gave him juice. I didn't check his blood sugar or anything.
Didn't know my mom was just in there, like, fifteen minutes beforehand and saw him, you know, unresponsive. There was foam coming out of his mouth. Telltale signs that, you know, he he didn't put it together that it was a seizure. I mean, that sounds like a seizure. But she had already given him, you know, some juice before I even got in there.
He kinda snapped out of it. He didn't even like, he didn't know he had a seizure. I'm like, oh my god. Do I take him to the hospital? I knew that they couldn't really do anything for him, but I still wanted him to get checked out.
But he got so sick. He was throwing up. He was super nauseous for a couple hours. So, like, he was just throwing up. He fell back to sleep.
I'm like, I'm gonna take him to the emergency room after he he wakes back up. He had a terrible headache for a few days afterwards even. And but, you know, I took him to the emergency room, you know, they there was nothing they could do. They were going to give him something for nausea, but he wasn't nauseous by the time they actually saw him. They gave him some medicine for his headache, you know, and then they wanted him to go get, like, a sleep study done to make sure it wasn't, like, epilepsy and, like Ugh.
Even though they were, like, I'm sure it's not, but this is our protocol.
If I Gave You a Magic Wand44:08
Amber, can I ask you a question? I gave you a magic wand and I said, wish for things that make everything better, do you know what would help? Did you
have like, let's Oh, yeah.
Know what I mean? Yeah. What would help what would help?
Like, a second me would be great that would just, like
Right.
You know? Maybe
More hands, more time.
Yeah. Honestly, like, having another person, money, the the whole time, like, I wasn't working. So it it it was really rough this this past year
and a half. But You you weren't working because of having to put the effort into the kids or because you didn't have a job or what was the reason for that?
No. I mean, I I got FMLA, so I was working, but it was maybe half the amount. There was times I would go into work, get a call from the nurse, had to just leave soon as I got there. Or, you know, maybe he's, you know, has a stomachache and didn't wanna go to school, and I couldn't leave him home. So I would have to call off a lot.
Mhmm. So that happened. Yeah. Like, a bit
When you think of your son, do you think is he a good kid in a bad situation, or do you think he's do you think he's prone to just being bombastic?
He's a good kid. He's trying to get a grip on his emotions that they're bigger than he is. Mhmm. And through all this, I realized, like, a lot has to do with his ADHD and executive functioning. You know, he something happens, he's zero to a 100, you know, and we have to work backwards from a 100 and calm him down if, you know, something upsets him.
Do you know what upsets him, or could it be anything? It's
no. It's it's not. Like, what what except I
don't know. Like, it's not random. You you the when it happens, you see that, like, oh, that's reasonable that he's upset.
He like, he doesn't like being treated unfairly, which was a big issue he was also having with this school. He if he knew, like, his math teacher, she's a total turd. She made me cry at the parent teacher conference.
Wait. She's a what a total what?
A turd.
Oh, okay.
But, like, if he knows if he feels you're treating him unfairly or that you don't like him, he he's going to give it right back to you. You know what I mean? Mhmm. So there was a lot of that going on with with certain teachers too.
But Is any of this is any of this I don't know. Are are they righteous in any way? Like, is is he like, can you put yourself in their shoes for a second?
Oh, yeah. I put myself in their shoes for a whole year. Yeah. They're like I was like, no. I understand.
You know, you he know, and I I would explain to them. I'm like, if he doesn't think that, you know because he he'll tell me things. He'll be like, oh, yeah. My math teacher, you know, she told the kids, you know, if he bothers you, I'll move him to the back of the classroom. You know, I like he's like, I was just sitting there.
I wasn't doing anything. Why did she say that? You know, like so things hurt his he's sensitive. You know? Things do hurt his feelings, but the way he acts
They feel like he feels like he like they're shitting they're shitting on him a lot.
Yeah. And does it seem like that told. It it does happen a lot. Yeah. Honestly, like
Well, he's an easy target for them. Right? He because in their head, right, he's not a good kid, and he's the problem.
What happens. Yeah. Yeah. Exactly. Because they'll they'll just you know, it's it's Caden.
He's the problem. Even if it wasn't him, we know his background.
He's a good scapegoat. Anyway. Times too.
He's been a scapegoat so much. So I've always been there trying to, you know, stand up for him when I can, you know, so his confidence doesn't get shattered. Like, even this whole thing with the school, he still wanted to go to school, and I'm so proud of him that it didn't, like, crush him and you know, because the the principal even at one point said, how about homeschooling? And it's like, He actually wants
was like, hey. Could you take him and leave, please? Is that what that's Yeah. You know, there's this gosh. There's this book.
I forget which this is helpful. I'm not sure which book I read this in. Right? But I guess there's this kinda, like like, psychological study that was done. They went to kindergarten teachers, and it turned out that kindergarten teachers completely unbeknownst to them, meaning they did not know they were doing this.
They were kinder, more lenient, and more loving towards attractive children.
Labeled the Problem Kid48:48
Oh my god.
Yeah. And it's not it's not a thing they did on purpose. They didn't like like, no one stood up at the front of the room and went, that kid's cute. I'll be nicer to that kid. But they assume that attractive children are smarter.
They cut them more breaks. They like them better, like, the whole thing. But then once you really, like, examine it, they have no idea they're doing it. And so I'm wondering
see that?
Yeah. On the flip side of that, if once a kid is problematic, you're probably digging the hole deeper and deeper for him, you know, I I would say unconsciously if you're the teacher.
Oh, yeah. He he's totally been labeled. Now take him out of school and put him in sports, he's great. Wouldn't know that there was any issue. It it's been
That part of his life goes really well.
Exactly. And, I mean, his father had terrible ADHD, so did my dad. Mhmm. Neither of them graduated high school, you know. I just I see them and I try so hard to not have my son wind up like that.
Did did did either of them have success in life as adults?
No. Sorry. No. They don't.
I was hoping you'd be like, my god. Yeah. Like, he ran a a very successful small engine repair shop, Scott. But no. So they had trouble navigating life in general.
You're worried about that for him.
Yes. You know? And I'm trying to, like, parent him in a more compassionate way, you know, back you know, when they were growing up, it was like, you know, stop acting up, you know, smack them around a bit, you know? Mhmm. Like, why don't you listen?
You know? And, you know, that didn't work out for either of them, and I don't want And try not to have
that happen again. Yeah. Of course. Yeah. Hey.
Listen. The medication I'm sorry. I think I'm am I getting sick? Uh-oh. Back of my throat is I oh, god.
I shouldn't tell you about it. You'll think you're sick now.
Honestly, Caden just had a sore throat and everything. So
No. I'm sorry. I just have a little bit of, like, whatever's going on back there. Tell me about the medication again. Is it methyl what is it?
Methylphenidate. Phenidate.
Okay. So I thought that's what you said. I looked it up. It's a stimulant. And is he on it right now?
Yes. He takes it while he goes to school.
But in ADHD, it feels calming because it's a stimulant that feels calming because it calming, end quote. It improves signal strength and attention control circuits. Simply put, your brain uses chemical bestengers, especially dopamine and norepinephrine to help with attention, motivation, task starting, impulse control, and working memory. This medication mainly works by blocking the reuptake of dopamine and norepinephrine. Meaning, it slows the brain from vacuuming those chemicals back up too quickly.
More of those signals stay available between neurons for longer. The FDA label says the exact therapeutic action in ADHD is not fully known, but the medication is thought to block norepinephrine and dopamine reuptake and increase their availability outside of the neuron. Well, that's what it's doing. Who the hell figured that out?
I don't know, but thank god they did it because well, that was the thing. Like, I their grandmother on their dad's side, you know, she proudly would say, you know, oh, yeah. You know, I I had given him, you know, her son, their dad, Ritalin, and their, like, PCP said, take him right off of that. Like, you're not giving him any of that. And I'm like, now look at him.
You know what I mean? Like, what if he you know, that medicine wasn't demonized and you didn't didn't take him off of it? He could have had a completely different life, you know?
What is it? A ton of medications here. Common ADHD meds, Ritalin, Concerta, Medidate, Methylin, Quilvant XR, Quilchu ER, but, I mean, there's a ton of different ones. Some of these look like extended release and stuff like that. So why do you have them on it at school and not always?
Well, it also affects your sleep. So it's, I I think he has, like, the extended release. It only lasts about, like, six, seven hours.
Okay.
If he were to have it all the time, he would never sleep. He already has a bit of an issue falling asleep. Like, it's like, if he forgets it, he usually takes a nap after school. But if he, now my throat is, like, dry. Sorry.
I'm sorry.
Did I do that to you by coughing?
Oh my gosh. I didn't know I was that bad with my hypochondria.
Jeez. I coughed and Amber's like, I'm I'm verklempt. Everything's going wrong. Go ahead. Take a drink.
I'll take a drink too. We'll do it together. It'd be a tea time.
Oh my gosh.
Was fascinating. Thank you very much, Amber. I appreciate you admitting that out loud.
But, yeah. I don't remember where we were.
We feel from
all over the
We were a team for two. The the medication help stops him helps him with some stuff, but hurts him because he can't sleep. So it's it's not a perfect, obviously, answer for him. So when you stop and think about him because you're the only one thinking about him. Right?
And I would so when you stop and think about him, is he better off on it or better off off it? And why?
He's better off when he's on the medicine for sure. Like, whatever is going on in his brain, especially when it comes to to focusing on school,
he What about if he wasn't in school though? Like, like, I let's let's imagine you live on a desert island. Do you think he would need it?
I don't know. I have been curious to like, I haven't actually witnessed him on it because he only take it while he's at school. The doctors would like him on it every day just to, you know, keep consistency, but I would have to wait. Like, I work weekends. I would have to wake him up for yet another thing to give him the medicine, like, around, like, 07:00 on the weekend, and I already wake him enough, you you know, when he's got a low blood sugar and, you know, he like so I'm like
You're not with him on the weekends, generally?
No. Generally, I have They're at work. Yeah.
Yeah. What do they what do they do during the weekends? Are they with grandma or what do they do? Are they feral? They on the They're they're they're kind of
feral, honestly. Like, my daughter, I kinda put him in charge if there's an emergency, and I I hate to do it, and she's not too thrilled with it either. But, like, my mother, she works too, but when she's not working, she is off doing her own thing, pretty much. Like, I I don't wanna talk, like, badly about her, but even, like, a month after diagnosis, I was like, I think I could keep my job, you know, with your help and, you know, manage his his diabetes. And she's like, yeah.
I don't think Would
love to, but my college game is on Wednesdays. I gotta go.
You know? Yeah. And she has held true to that, not wanting to really
Be involved.
Help. Yeah. So, unfortunately, like, she's kinda going through a divorce and, you know But your
mom's getting divorced?
Yeah. Well, it's part of the reason that I moved in here. It was, you know, beneficial for me to save money and help her with bills, and then it just worked out that way. Yeah. Like like it did.
But but yeah. I feel like I had a lot to say, so I'm kinda going in circles. I was I was I was talking about the seizure. So I had two therapists coming to the house, family therapists, and I had told them I'm taking him to the emergency room. We should be back for a 03:00 appointment.
Well, they wound up calling Children and Youth because they said that I waited too long to help help him get medical care. So, you know, they told me that, like, listen. This is what we had to do. I was like, I'm through with you. I can't believe you'd do that.
Like, I I was very
Cat Scratch Seizure57:26
upset about that. Like Wait. They threw you under the bus. They said that you waited too long to get a medical so if I remember back to the seizure, you fell asleep. The CGM was messed up.
He got, automated insulin more than he should have. Your mom finds him frothy, unresponsive, gives him a juice. Mhmm.
And then she
just by by the way, I didn't I didn't wanna ask this part, but she just fucks off and leaves after that? Doesn't come get you?
My mother, I think, had worked that day. Well, that that was part of the thing that I'm agitated with her about. She heard beeping. Like, she heard his alarms going off that night, and I guess, thought I was taking care of it.
But she did get up tried gave him juice and then left him alone?
Well, I guess she went out to the kitchen. She was just out in the kitchen when that happened, like, probably getting ready for work. And then she came back, and she's like, yeah. I gave him juice. I checked his blood sugar.
His blood sugar wasn't, like it was probably, like, 70 or something. It wasn't, like
Okay. So she checked it. He was 70. You think she maybe thought he was just asleep and a little low and gave him the the juice.
Yeah.
Okay.
And then 15 didn't yeah. It didn't hit her.
Yeah. Yeah. Give me a second. Then fifteen minutes later, you roll up on it, see what's going on, give him another juice, you come to the conclusion that he's had a seizure.
Yeah. She told me what happened. Well, she even heard convulsing
Okay.
At one point and thought it was my cat having a seizure. She's like, I thought it sounded, like, bigger than mama bear, my cat.
You people do not need a cat. Let me just say this, Amber. Amber, you don't you don't need a cat. There's no more responsibility necessary in your life. And so Oh my god.
So she
She's crazy that my cat like, I think stress makes her have seizures because right after Caden was diagnosed, I thought I was gonna have to put her down. She was having, like, seven seizures a day.
Your mom thought the cat did it. Your mom thought the cat did it. Right?
Well, I she thought that the cat was having a seizure. That's what she heard overnight, and it must have it must have been Caden because
Can we call this episode cat scratch seizure? I think maybe yes.
That's actually hilarious.
Thank you. I'm doing my best over here, Amber, to make your incredibly sad story more fun for people to listen to. I know.
I I was like, I hope that this doesn't
just turn into a big party. It doesn't. Alright. I don't think it's listen. Here's what I think.
If if I can be candid. Right? You're limited in help. You're limited in in finances. You have to go to work.
Your kids have problems. I it sounds to me like you're doing the best that you can. The best you can is not awesome, but it is it is the best you can. I listen. I grew up in that a house like that and nobody around me ever.
Like, I got up in the morning. I went to school. I came home. My mom was gone. She got home at 09:00 at night.
She yelled at us to take a shower, and then that was it. You you know what I mean? Like, there was we were broke. We didn't have the luxury of hanging out with our kids or chatting or being there on the weekends and, like, that none of that. I didn't live any of my life like that.
And I ended up raising my brothers, which sucked, by the way, in case you're wondering how your daughter feels. Mhmm. But, like, a but point being, this is what it is. I mean, you can't stop this from being like, people could listen to go, oh, she should do this. She should do that.
Try to get the school to help her. They're a problem. Try to get some outside therapist to help her. They fucking threw her under the bus while she was trying to do her best she could with the kid and the seizure. And, like, every time she turns to somebody, they shake her down.
The lawyer shakes her down. The lawyer doesn't wanna help your kid. The lawyer wants to sue the school, make 30%. That's what the lawyer wants. Right?
Yeah.
Yeah. The dad ain't helping anybody. Right? Your mom isn't half checked out, and I don't know if I can blame her or not. That's neither here or there because she's not helping you.
And so and maybe she doesn't have the ability to help. So truth be told, you're trying to keep all these balls up in the air until these kids get old enough to be a little more responsible for themselves hopefully. And then, I mean, the best you can hope for is to is to help them, I think. I don't I hope this doesn't sound sad. I think the best you can hope for is to help them break this cycle as adults.
Like, you're already totally. Yeah. You're already in it, Amber. We're we're not going backwards now. Like and that and fair enough.
You know? And you love those kids. It sounds like you love them immensely. And and so Yeah. Yeah.
Yeah. So you gotta help them get to the part where they can make better decisions. You gotta set it up so your daughter doesn't end up with some scattered guy who's gonna flake on her. Like, that's the goal. Like, you're you gotta find a thing in the world that your son can do where he can be peaceful and sleep and at the same time take how his brain works and and adapt it to the world somehow.
Like, I think the biggest like, I don't know shit about any of this. Okay? But listening to your story, what it feels like is that that kid's a square peg, and you were trying to pound it into a round hole at school.
No. Absolutely. Like, I he is, you know, not a little, you know exactly.
He doesn't fit in that scenario.
He thinks that's inside the box. You know? Yeah. And I just I've been trying to, like, you know, just encourage him until, like, you know, maybe he could go to, like, a trade school. I I can see him doing something like that where he's not just sitting down in a box.
You know, there's
room Oh, it's not right for him. Yeah.
Yeah. Yeah. You know? It's it's not. And so I'd yeah.
That's what I've just been trying to encourage him so he doesn't lose that, you know, self worth. I mean, he was in kindergarten. He's like, I'm bad and I don't know why. You know? Like, after he he's like, I'm like, oh god.
Don't say that about yourself. You know? Because it was it went back that far. You know? He was running and hiding under the table, you know, and everything.
So, you know, there was always, space. You know
He's and it's and it's not it's not something you can just tell him to stop doing. It's not like that. Right? Like so it's a bad situation, but it'll also be over fairly soon. I you know, it's funny.
Maybe the homeschooling is not a bad idea. Like Well, that's
the thing. I did actually take him out at his old school because I saw how it was emotionally destroying him, and I did put him in home. Like, I did like, I I worked at a different job at the time, and, I mean, I cut my hours. I don't even wanna get into it. It didn't work out, we'll say.
He wound up wanting to go back to school. It just put me in a financial hole, which is part of the reason I I moved in with my mom to, like Mhmm. Start, you know
So you think
get all that back in order. Yeah. So Wait. Wait. Wait.
Give me a second here, though. Like, I wanna go back to school.
Why? What what didn't work about it?
He wants to fit in. He always just wants to be like the other kids. You know?
Oh, okay.
Even when he was little, I would pack him a lunch. He would he started throwing it away. I just wanna eat what the other kids eat. So if you can imagine, that's through diabetes and that was Oh,
so he so even though he doesn't fit in that scenario, he desperately wants to. Yeah. So does he, be on the medication for school?
He he sees the importance. He does. He even said, he's like, I'm not anxious anymore.
Oh. You know,
I wanna, you know, like because he's seeing a therapist at the school, and, you know, they go through, like, their, like, game plan. And he told her, like, no. We don't have to work on that anymore. He just wants to work on, you know, his emotions, anger. He he's very aware of, you know, how he is and how he doesn't want to do you know, act certain ways.
Yeah. Listen. Are any of these other medications better? Like, does anybody ever say, like, like, can we get some of the benefit we're getting without the the sleep issue, or is that just is this part and parcel for all these meds?
I think it's how stimulants are, and I didn't want him to, like, bounce around. Like, it's the the good is outweighing the bad in my opinion. Mhmm. You know, again, I get worried. I'm like, are we gonna be messing with the liver, getting this?
You know? Because some of them, they take weeks to even start working. You know? So I'm like, I don't want to take him off of this, see if it's six weeks this is working, it's not working, then have to put him on something else. You know?
So it's like, let's just stick with what's working. Yeah. Okay. And, yeah, that's the let let me go back. So Go ahead.
The reason I had mentioned the seizure, now children and youth call me, and they I'm like, listen. I'm wasn't the first time I got children and youth called. They actually the school, the year before when I took him off his medication, they called Children and Youth saying I wasn't giving him his medication even though the doctor said, you're the mom. Do what you want. You know, like, it's up to you if you want him on the medicine.
But, anyway, I, you know, I came at it like like, I'm, like, two steps ahead of children and you taking my kids away from me. And the lady was like, listen. I'm not here to take your kids away. We could just forget this phone call ever happened, or you could look at me as an aid. Maybe I could help you in some way.
So I'm like, sure. I could use help. Let's let's see what you have. Yeah. She winds up sending us a lady that was kinda like a therapist, but she I'm not quite sure what she was, but she actually had type one, and they're like, you know, she understands.
Like, so this lady's coming to the house. She winds up coming to the magistrate with us. I had the lawyer and, you know, I tell him what happens. We're all at the magistrate, and the lawyer's like, let me try talking to the security guard. Maybe we don't even have to go in front of the magistrate.
He comes back. He's like, this is, like, bullshit. That's what the lawyer actually said to me. He's like, yeah. He wants Caden on probation for six weeks, and that's how he'll, like, you know, drop the charges.
And he's like, I don't know about you, but that doesn't sound good to me. I was like, absolutely not. So we proceed in front of the magistrate, and I thought this was gonna be open closed, medical emergency, you know, all dropped. And, honestly, the security guard, he kept pushing it. He's like, I wanna know how this cannot happen anymore.
He shouldn't act like this. You know? What are we gonna do about it? No. This isn't good enough to to the point where we actually had to put the woman like, she had to, you know, go into the stand and, like, testify, you know.
And she not only had type one, she was a nurse and she was in school to for psychology. So she had a lot of credentials and, like, you know, she spoke and she she rocked. Like, she was so impressive. You know? And, like, at one point, you know, the security guard said it again, like, how can we prevent this?
She's like, I don't know. Cure diabetes? She's like, you know, like, you can't. Like, the you know, it's diabetes. There will be low blood sugars.
Yeah. You're trying to
An Aide, and a Nurse Who Testified1:07:22
hold a 15 year old accountable for something he might have said when he had a low
blood 11.
11. He's my he's my
12 year old. Yeah. He was 11 at
the time. What are we talking about here? Like, rid it's ridiculous. What what's wrong with this guy? Is he bored?
He needed something to do? The security guard? I mean
Yeah. Good question. I think at this point, like, it went I don't think that they thought I would get a lawyer. I thought that they would just, you know
Is your son, like, nine feet tall and weighs, like, three hundred what's he scared of exactly?
Oh, he was always a tiny little thing too. Like, you know, I I do think that they were just trying to prove their case because at this time, they were worried that I was getting a lawyer, you know, to come after the school.
Previous, do you think they pushed the security guard a little bit to try to cause a problem to get rid of your son? Like, you or or what I mean They
might have. Honestly, because, like
Are you in the woods? What's going on? I need you near a Metropolitan Center. I I
kinda am in the woods.
How are you? I am.
But yeah. So the the magistrate, she wound up, you know it it seemed like she didn't want to take our side, but she had to to kind of an extent. Like, that was the vibe I was getting, but she was also like, this doesn't seem like it was the security guard's fault. This seems like it was the principal's fault because why did he put an untrained officer in place of a medical emergency? And I was like, oh, that is fair.
And then she kinda insinuated, like, this seems like a school issue, in which case my lawyer was like, she's actually got another lawyer and will be coming after the school because of all this. You know? So that was the end of that, and I I was really glad that that woman had got on the stand and spoke because, like I said, I couldn't believe that it wasn't as straightforward as This
is a medical thing. Yeah. We're sorry. Bye.
Face closed. Like, sorry to waste your time. But so, I mean, for that alone, I was glad Children and Youth had gotten involved and sent her to us. Because even, like, when she would come to the house, she's like, everybody just always tells me, you just need more help. Like, you know, like, that's all you need.
I would have suggested a lawyer anyway. You're already getting a lawyer. There was really nothing more she she could do for us.
Right. You know? Jeez.
But so she doesn't come around anymore. Fast forward to more recent. I had a, like, a lot to say, so I'm really trying to
You're doing well. Hey. Listen. It's a it's a big story, and you're doing a good job getting through it. Don't worry about it.
We have, like we can do, like, ten more minutes, and then we're gonna we'll be I'll be over too far. But, like, let's take a second and think. What else did you wanna talk about that you don't think we got to?
Yeah. Well, just like, the case is all closed with the lawyer and the school now, and I didn't even know what I was exactly, like, fighting for getting that lawyer, but they wound up accommodating. They were trying to get him out of the school to go to, like, a, like, a behavioral health school. Mhmm. But we wound up getting it, so he he goes over to the high school instead of being with that, like, snotty math teacher, and he goes over to the high school for they have, like, some teachers that help with behavior.
Yeah.
So he goes over there for a couple classes, and they also we got it. So, like, they can't call me for every little small inconvenience that now I like, the information I have now, it's like, oh, now I know that if, you know, he wants to do an after school activity, which he wants to wrestle next year, he wants to play baseball for the school. Like, so like, there was a lot of other things that I was like, how is this going to work if I have to sit at the school, you know, like I thought I had to do previously? So there was a lot of little things like that that we we got taken care of, and they also gave him money in a fund. Like, it's not like I got money, but there's a fund for his education that he got.
Do you do you think the high school is just better equipped to help him?
Yes. And even, like, one of the, like, counselors that he talks to even said, like, he's gonna do much better in the high school. They have a lot more support in place. And
Well, maybe this is the bit yeah. Maybe this is the beginning of a new chapter for him.
Yes. So he goes there. He loves it at the high school. Like, before the whole magistrate security officer issue, I was asking him, like, maybe he needs some tutoring. He only got half days last year.
And they're like, oh, we'll see, but they couldn't find anybody. Turns out that it was also illegal to not provide education for him and, like, them doing the half days and then him not getting a full education.
Yeah.
Like, it's every student's, like
He's got a right to
a full education. Yeah. So now we have this fund where I can get him tutoring. I could even get him executive functioning coaching, which I didn't even know was a thing to help kids with ADHD. Mhmm.
So I'm looking forward to all that. The case was very quickly resolved. Actually, the lawyer had told me she thought that this could go on well until next year, and it's already been all closed out for a month now. She wound up not taking that 30% of the money that he got because I think that she was just happy with what she caught and how quick it went the way it was. Mhmm.
So, like, he's happy now, and I'm just, like, so thrilled that he's been doing so much better.
Yeah.
But, yeah, that was
The fund is is the result of the of the the lawyer's work.
And part of it was, you know because also they were suspending him, so he was also missing school. And then it was like, well, how is he supposed to do his schoolwork when he's not here Mhmm. When you're suspending him all the time? They're no longer doing that anymore, thankfully. Like, yeah, it's
How much longer till he's out of that school totally?
Just two more weeks. Yeah. He goes to seventh grade, and the high school is seventh to twelfth grade.
Graduation day. Get out of there. Yeah. Yeah. Yeah.
Yeah. Definitely. So just so thrilled about all that.
How old is he today? He's 12. Okay. So he'll have the summer, and and maybe, you know, maybe he'll he'll change a little bit. Maybe his situation will get better.
Maybe he can spend the summer getting better at the diabetes thing, getting better at the ADHD thing. Really give him a great launch at the high school and get him going. You know.
Yeah. And I I think a big issue was too, like, I think he was also depressed. I didn't put him in there's no fall ball at the school district that he goes to in. So it was like the first time he hadn't played baseball when school started.
Okay.
So I've I noticed, like, I just have to keep him in things. You know?
He's been moving.
Yes. Yes. He does.
Well, I kind of I so you live in Pennsylvania. Right?
Yes.
Yeah. There's fall ball out there somewhere. You're just gonna have to get into a travel league to find it.
Yeah. I I've thought about travel with my work and
How are gonna do that?
Don't know if I could make it work. So so he's actually going to start playing football this this year. Like, it was always baseball, like, his whole life. Ever since he was, like, four years old, it was always baseball. We started at this school, and somebody was like, oh, do you wanna wrestle?
So he started wrestling. Well, honestly, it was right, like, two weeks before diagnosis. And I remember taking him to wrestling practice, and his blood sugar went to, like, two fifty. And I'm like, you know what? How about we learn this diabetes thing, and then we come back wrestling because I'm like, what just happened here?
Not sure what's going on. How how So
Let's take the last wrestle. Yeah.
How the Diabetes Is Going Now1:18:32
Yeah. Amber, let's take the last minute or two here. Like, how is the diabetes part going right now?
It's it's going a lot better. Like, even during all of this, he was I didn't even mention impulsively taking too much insulin. So we were having issues with if, like, he got mad. All of a sudden, I'm like, I know he just took too much insulin. That was a big issue, but he's not even doing that anymore since we got everything straightened out at school.
I just think he was so overwhelmed with everything. He does a great job. He's very independent with his management. I help him as much as I can, but, like, he doesn't wanna put the infusion he doesn't want me to put the infusion set on or his Dexcom. He wants that.
I'll fill up the cartridges. I'll unwrap the Dexcoms, you know, like, get everything ready, and he just, like, applies it. Mhmm. But if I'm not here, he'll put it on, like, no problem. He doesn't want high blood sugars, so sometimes we we have an issue with him overcorrecting, which I've heard that he's not alone in that.
So we're still working on that. But, yeah, he he's very active in it. I just hope that he doesn't, you know, rebel against it one day. I've been trying really hard to not come off as, like
Lording
over Yeah. Yeah. Or anything. Just, give him any bad feelings towards it. I kinda try to tell him it's like brushing your teeth, taking a shower.
You know? You just
Yeah.
You change in your pump site. You know? It's just another part of your your routine. Right. You know?
Everybody's routine can be a little bit different depending on
Situation. The
things they have going on. Amber, you I just
You're doing a good job. Don't? No. I mean, gosh. It's a it's a lot, and you're I think you're doing a good job.
It's it's you know? I imagine it doesn't feel that way, but I you're trying. You're there. You're, you know, engaged. You're, you know, talking about it, trying to figure out other ideas.
It doesn't sound like you've given up. It's I I I just think it's probably a really long process that you're in the beginning of still And a lot of different factors, you know.
Yeah. I mean, you know, you know, we're trying our best and, you know, I try like, I love all the mental health series that you do with Erica, you know. Like, I try really hard. Like, at one point, he you know, I said to him, some something happened. It was a few months ago, and I'm like, I understand.
And he was like, no. You don't understand. And it, like, crushed me, but, like, I tried to change my wording with some of the things too because it's like, yeah. I understand from my point of view, not him and his point of view with diabetes, you know. So I and then I know that was talked about in the series.
Yeah. The language is important. You just have to you just have to say, like, I I don't live with the same problems you have, and I, you know, I but I am doing my best to to to to understand as best I can what's happening to you so that I can be as, you know, valuable to you as possible. Like, it is it is tough when you say I understand. People are like, you don't you don't know what you're talking about.
And I can see how it's crushing from your side to hear that because you're probably putting so much effort into trying to trying to absorb as much of this as possible.
It could be so isolating. I'd like I don't ever want him to feel like he's all alone in this. You know? Like, I wanna know as much as I can, so I'm here when he's frustrated as somebody who, you know, understands to some extent. You know?
Like because you know when somebody doesn't understand, you know, anything about type one, and you're trying to explain the same things over and over. So I wanna always be his support. So
Yeah. The best you can do is be there. I mean, I really do think that's most of it. Just be there so that he's aware that when when he wants you, you're ready, willing, able, excited to be involved. Yeah.
Yeah. And just try not to push. I thought that was good advice you gave yourself too. Don't don't push too much and but stay involved and it's a balancing act. It's it's not It really is.
I I had to learn a lot about control because, like, I there was a way I wanted to manage it for him. Mhmm. You know? And then there was singing of him and his emotions and, you know, and not just being, like, diabetes or, you know, like, even food related. It was like, okay.
You know? Okay. You wanna eat this? Okay. We're we're gonna figure out how to eat this.
You know? I don't want you to feel restricted because at first, you know, I I think, like, everybody does it. We'll do low carb. It'll be great. You know?
And it's like, okay. He really doesn't wanna do low carb. Let's do this so you're comfortable. And you're in control because it was it took a lot of control away from him, and he still wants
Right.
To feel in control as best as he can. So
Amber, I'm impressed. I really am. Because you could you could be in a significantly different situation right now, and your understanding could be a lot worse, but it's not. And you're you're doing a great job. You really are.
I want you that's what I'd like to end on is you knowing that this is long, it's hard, but you were doing a really great job. I would say stay on the course you're on, and I I think you'll get there.
Well, thank you so much. And I'm just so glad that somebody, you know, referred the podcast to me, like, just a couple weeks after he was diagnosed because it has just helped immensely in in so many ways.
I'm glad. That's nice. I'm I'm glad to know that. Thank you. You you made my day.
Of course.
Yeah. Oh gosh. I don't know what to say other than get back in there. Keep throwing your hands, Amber.
Yeah. Life. Right? I mean, it's a roller coaster.
You could trick a boy into helping you? I mean, I know that's not right, but could you?
Maybe one day, I feel like it's just it's another person to think about at this point. To get dating.
Yeah. My god. I can imagine dating you and being like, I don't know. I'm gonna go home and meet her kids, and you get home and be like, oh, I don't know what's happening.
Oh, yeah. It's a lot. It's a lot. I I I won't lie.
I won't lie. Oh my god. Oh, I'm so upset. What did I say we were gonna call this one?
Oh, something about cats.
Okay. Cat scratch seizure. There you go.
That that's adorable. I love it.
Thank you. Because I don't know what I I I love your mom's like, thought it was the cat having a seizure. Like, when that's happening, you know everything's upside down. When you think when you think cat seizure is a reasonable answer to the noise in your house Yeah. That's how you know things have gotten out of hand.
Oh my gosh. Yeah.
Oh my god. Okay. Alright. Let me let you go. Hold on one second.
I I need to talk to you before we're done. Hold on.
Okay.
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#1897 Face Your Face
Face Your Face
Three siblings, all type 1. After her identical twin — also type 1 — died, she's learning to be a ‘me’ after a lifetime as a ‘we.’
Jump to a moment
- A rare in-womb condition, TAPS (twin anemia polycythemia sequence), left the identical twins with very different vascular systems — Cassie’s vessels wide, her sister’s narrow and stiff. Because type 1 is hard on the vascular system, her sister faced compounded complications. TAPS wasn’t formally recognized until 2007; the family only recently found answers.
- Three siblings have type 1 with no family history of diabetes. Identical twins sharing DNA explains two; a third is genuinely unusual. Screening programs like TrialNet can flag elevated type 1 risk in relatives.
- Let the people close to you learn your diabetes. Cassie spent years shielding her partner from the “mental load” — until a scary low showed her that keeping him in the dark was the real danger. Loved ones who know how to help are a safety net, not a burden.
- Access and education shape outcomes, not just effort: decades across the Humulin/Humalog era, an insurance gap at 18, and — for her brother — type 1 inside a correctional facility (twice-daily fixed doses, no carb ratio, no glucose gel allowed).
- Grief, and “being a me after a lifetime as a we.” Twin loss is uniquely isolating with few resources, and medical trauma often goes unseen. What helped Cassie: therapy, the basics (consistent meals, sleep, water, sun, movement), and choosing to accept the gifts of survival rather than run from them — doing it, finally, for herself.
- Twinless Twins Support Group International — support for people who have lost a twin (verify URL)
- TAPS Support Foundation — twin anemia polycythemia sequence awareness (verify URL)
- TrialNet — free type 1 risk screening for relatives (verify URL)
- Bold Beginnings Series — for the newly diagnosed, with Jenny Smith (verify slug)
- Diabetes Pro Tip Series — foundational management series (verify slug)
- Juicebox Podcast Facebook Group — community around type 1 (verify URL)
- Juicebox Podcast — all series and free resources
Every word of the conversation
Three Siblings, One Diagnosis0:00
Friends, we're all back together for the next episode of the Juice Box podcast. Welcome.
I have type one diabetes. My identical twin sister had type one diabetes, and my older brother has type one diabetes.
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. 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. Learn more and get started today at omnipod.com/juicebox.
At my link, you can get a free starter kit right now. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox. This episode of the juice box podcast is sponsored by US Med, usmed.com/juicebox, or call (888) 721-1514.
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Hi. My name is Cassie. I am here to talk about type one diabetes and siblings, address twin loss, and talk about a little bit of how twin to twin transfusion or taps can affect the vascular system and type one diabetics in the long run.
Cassie. Jeez. Becoming prepared.
I am prepared.
I feel like I'm gonna have to listen harder. Do people call you Cass?
Yeah. Some people do.
Do is those people people you like, or you prefer when people call you Cassie?
No. Cassie's fine. People close to me call me that.
Oh, well, not close to you. I can't do that.
You know what, Scott? I feel close to you, but unless I can do your podcast for a minute.
Oh, alright. Well, then if I slip into that, you you won't be offended. I appreciate that.
No. Not at all.
Let's start at the beginning. You have diabetes?
Yes. I have type one diabetes. My identical twin sister had type one diabetes, and my older brother has type one diabetes.
Wait. You are one of three children, all of whom have it?
Yes.
And do your parents have any autoimmune issues?
My mom has, like, hypothyroidism. My dad has arthritis, like rheumatoid arthritis. Mhmm. But we don't have any family history of diabetes.
Okay. No type one that you guys could find in the extended family? No. How about the brothers and sisters? Did you guys have anything other than type one?
So my sister, she had a slew of things. She had all kinds of mysterious illnesses along the way that took us a very long time to find answers to. My brother, he's pretty healthy. He's type one. Other than that, he's had a few complications with the type one, but overall, pretty healthy.
Okay. How old are you?
I'm 32.
32. Is your brother older or younger?
He's older. He's 35.
Losing Her Twin3:32
And then I guess I have to ask you, how long ago did your sister pass away?
So it's actually gonna be five years on Friday.
Oh my gosh. I'm sorry.
I know. It still feels like yesterday.
I was gonna say, is the difficulty got lessened at all, or what's it like knowing that it's coming up on Friday?
I would say the difficulty, it has lessened a little bit, but it still kinda feels like I'm right there. Still kind of in that same headspace, that same day five years ago. And every year, this time of year comes around, I start feeling a little off, and I'm like, what's wrong with me? Yeah. And then I'm like, oh, well, this makes sense because your body remembers.
Yeah. Hey. Are you were you guys identical twins or fraternal?
We're identical.
Can I ask a really difficult let me ask the difficult question in the first three minutes? Okay? And then we'll we'll get through this. Is what's it like to look into a casket and see somebody that looks just like you there?
So she was cremated.
Okay.
So I didn't particularly have that experience.
I feel like I'm glad
for you. Was with her when she passed.
Yeah.
And it was a strange moment because I knew. Like, I knew the exact moment she wasn't there anymore. I guess maybe, like, the equivalent to seeing her in a casket is maybe even just looking in the mirror Mhmm. And having other people, you know, telling you, oh, you look you look just like her. Seeing you, it reminds us of her.
It's it's a little bit of a tricky one.
Yeah. I was gonna say. Right? Because there are people that miss her that see you. Right?
Yes. And I'm still close with a lot of people who are close to her, her husband who took very, very good care of her along the way. We've been friends since high school, so he's still a pretty active member in my family. Mhmm. And then some of her friends, I'll catch here and there.
And then I come from a very large female dominant family. We're all very close, and they're a huge support system.
I'm glad. Yeah. Did she have children? No. Okay.
Do you find that when you're like, when people who miss her are in your presence, does it bring them comfort or sadness, you think?
I'm not sure. I would imagine it would probably make them a little uneasy because I feel like it would make me a little uneasy.
I mean, yeah, I feel there's an entire conversation just in this part of your story right here. Is it a thing you think about much, or are you right now going, why is this guy who makes a diabetes podcast digging into my psyche?
No. I I think about it waking up in the morning. I think about it when I go to bed at night.
Yeah. I would imagine. Oh my gosh. Okay. Alright.
We're gonna get past this part, but I cannot guarantee we're not coming back to it. So are you diagnosed at what age? You?
Diagnosed at Three, in the Humalog Era6:35
I was diagnosed at three and a half. Oh. My sister was diagnosed at three.
You were six months after. Apart. Yeah. Yeah. Mhmm.
And and your brother before or after you guys?
Quite a bit after. He was 12 years old. We would have been about nine.
Okay. You were not so maybe three years after you were diagnosed?
Six years.
No. Say I'm sorry. You were you I'm sorry. You said you were three when you were diagnosed?
Yes. I was three and a half. My brother was 12. Would have made my sister and I about nine or 10 when he was diagnosed.
Gotcha. I'm sorry. I I lost one of the steps in the math equation there
for a minute. That's okay.
I really did. I was like, what happened? Why did I get so confused? My gosh. So your mom raised two, three year olds with type one.
How long ago?
So we were diagnosed in '97. So this is before Lantus and right in the era that Humalog was approved. So we're talking about, like, the Humulin n, Humulin r era Yeah. Of insulin.
Thirty years ago, maybe?
Yeah. Yeah. Just about thirty years.
Yeah. Wow. Wow. Wow. Okay.
Did she look crazy by the time you were in high school? Did you look at her and, like, think like that lady needs to go for a walk and sit on a beach, or how did she manage it?
A 100%. I have no idea how she managed it. You know, in one of your podcasts a little while back, I think it was Behind the Cheese, you were saying how you think you could sneak in and change a pod out on your daughter without her noticing. Mhmm. And there was a lot of that.
There was a lot of sneaking into the room at night and poking fingers, checking blood sugar levels, trying not to wake one of us because if one of us woke, the other would wake. So I can't even imagine she pretty much did it on her own.
Oh, what a great title for an episode, Behind the Cheese. Is that where they kept the insulin?
Yeah. Yeah. That's awesome. Think that was an older episode. I just listened to it, though, and really enjoyed it.
Honestly, it's one of my skills picking the title. But I have so few marketable skills.
That's a good one. I
Cassie, I just the other day thought to myself, I have to keep this podcast going. I don't know what else I'm qualified to do. I'm too I'm I'm too young to retire, and I'm too abjectly unqualified to do anything else.
Well, the community needs you, so you're gonna have to keep the podcast going for the rest of us.
You're very nice. Thank you. It is really my
Sorry to not give you a choice.
Oh, I don't I don't mind, actually. I I would like to. It's just the fear of how it's I don't wanna I'm not gonna go down this road, but, like, you know, my thing is is held up by a social media structure that is just, I don't know, nebulous. It's hard it it's hard to understand how it works. It's hard to understand when it's gonna shift.
And it just it feels like I don't know. I I really don't know how to put it. It just feels like I'm cruising along on a nice calm ocean. And somebody said to me, we can just keep doing this forever or maybe a, you know, a tidal wave will come and just knock you over and you'll be gone. And you won't see it coming and that'll be the end of it.
And then that that beautiful boat you had, we're we're not getting that again. Like, that's the that's the anxiety I live with around around this work, but that's not the point. The point is is that I'm unqualified to do anything else. So you're Well,
I'm sure the I'm sorry to interrupt
You're not interrupting me. You're a good conversationalist, and I'm not used to that this early in the episode. So go ahead.
I'm sure the uncertainty of that is pretty scary That's all I was gonna say.
Thank you. It really is. I don't wanna complain because, you know, people take holes for a living and things like that, and it it's unseemly. But I do worry about it. So your mom is raising two little girls with type one.
Your brother is probably just off on the side going, man, I dodged one here, didn't I? And then it hits him. So when it gets to him, what's your remembrance of him being diagnosed?
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A Diagnosis in the Mountains12:31
So, actually, I remember a lot because we were in a pretty precarious situation because we were camping out in the Blue Ridge Mountains
Yeah.
When he started showing symptoms, you know, being thirsty and using the bathroom a lot. Because of my sister, my mom was able to identify the signs pretty early. So I didn't go into DKA yet diagnosis. My brother did, but mainly from lack of resources from where, like, we were at. Yeah.
So we were so far away from a hospital. I think it took us maybe three or four hours to get them into a hospital. Oh, came on a hospital.
Yeah. Okay.
And then we were in a hospital that had maybe a 100 rooms in it. It was very tiny in the middle of nowhere.
Oh, gosh. Blue Ridge Mountains, is that Tennessee?
I think that's Virginia.
Virginia? Okay. Once I move south Virginia. Cassie, once I move south, I'll know all this. Don't you worry.
I'll blend right in. At the moment, I live in the North. I have no idea what I'm talking about. So you're up in the mountains. You get to there.
He's already in DKA.
I'm not completely sure. I think so. He was showing the symptoms and the signs. Sorry. Excuse me.
You're fine. He looked I remember him looking very pale and almost a little gray, and he was very agitated. And who could blame him? He felt so awful. And then there was, like, a lot of drama around the campsite with my cousins, and they're bickering.
And he was bickering with people. He didn't feel good. And then it just kind of, like, dawned on my mom. Like, oh, shit. This is what's happening.
I've seen this before.
Have you spoken to her since as an adult? Was she waiting for the other shoe to drop once the first two got it?
I think I think she probably was. I know there's some kind of testing you can do to see if there's what is it? Like, the gene or
Yeah. There's it's like
Something like that.
There's a number of places that do it at this point. I think JDRF does a trial net. There's a bunch places you can get tested to see if it's likely that you could possibly get it.
Yeah. And they've been doing that with his with his children. I think, like, with the two of us having it, it was almost a never pro, like, being identical twins. Our DNA is identical. So that makes sense.
Having a third child in the family, that's a little unique.
Oh, it is.
It just means that Jean must have been extremely strong.
How old's your mom?
Along the line. She is 63.
How would she be on a podcast?
I think she'd probably be pretty good.
Yeah. I I think I might be interested in talking to your mom Monday. That's a that's a pretty a pretty unique situation. Right? Like
I'll let her know.
Yeah. Please. And if then there's no pressure, obviously. But okay. Okay.
So would you consider growing up, the three of you with type one, was it manic? Was it insane, or was it so part of the of life that it didn't feel different or odd?
Trading Insulin From the Couch Cushions15:31
It was manic. Definitely a little insane, but I think that was almost normal for us because we were also adapted to it. And I remember, like, running around and trying to dig insulin out of, like, couch cushions and stuff because we were all trading insulin vials based on who needed what at the time, and stuff would go missing. And then somebody needed their Lantus or someone needed their Humalog and didn't have it. And they're going to the fridge and taking somebody else's prescription.
And it just got really wild for a while there.
Weird question. A lot of times, I'll talk to people where the siblings who don't have type one feel left out. Left out is the wrong word. They feel probably like they're like they're they're sibling with type one is getting more attention. But when you all have it, does that feeling still exist?
Like, if you if I said to you right now, your mom's favorite was do have an answer?
I would say my sister. K. They were just very close and seemed to function a lot on, like, the same wavelength. I think that probably that feeling still existed for him just outside of the fact that he had twin sisters. Mhmm.
So there probably was a part of that that was a little isolating. That may not have anything to do with the diabetes itself.
Do you think your sister thought you or your brother was the favorite?
Maybe. I was, like, a little bit more introverted than my siblings.
Okay.
Like, hung out in my room a lot by myself. And so she was just always a little more social than me. And my brother, he's pretty he's pretty introverted as well, but he's also pretty close with my with my mom. They have their issues, of course, but she might say my brother.
Yeah. Ain't that funny? I wonder what your brother would say.
I know. I'm curious. I should ask him sometime. I
just think it's it's incredibly interesting because we we've when the conversation happens, the idea is, well, because that one has type one, this one feels like you're paying more attention to them because of their type one. I'm gonna tell you, I just think this is how kids feel. And you need a you need a thing to call the reason when you when you say, well, mom's nicer to that one or this one or whatever. Like, or dad does this instead of that one. Dad's I I guarantee you if you pull both my kids in here right now, put one of them in a soundproof booth, ask the first one, you know, do mom and dad have a favor?
They're gonna say yes. It's not true. Yeah. They're gonna say, do you get treated differently than the other one? They're gonna say yes.
It's not true. And, yeah, vice versa. They're both gonna think it was the other one. Fascinating. So I don't know.
I didn't feel like that growing up. But I had
all Yeah. We
I don't know.
Had the conversation actually not that long ago, my mom and I did, around, like, favorite kids. And she was telling me, like, you know, the favorite kid thing doesn't really exist, but there is a certain level of, like, compatibility and interest with some of your kids that maybe you don't have with other kids.
You know, like, your personalities match more.
Yeah. Yeah. So it's a little more that than actually having a favorite. They're still appreciating the differences, but the compatibility kinda makes a difference.
Yeah. Yeah. Both of my kids are a pain in the ass and really fantastic, so I don't even I wouldn't even know how to judge them that way. I'm sure they think the same on me. Probably like he's a pain in the ass.
Okay. So pumps, trading insulin, general craziness. How about health and outcomes? Is there goals back then? I mean, in the fur let's cut it into the first ten years.
The first ten years, is it just about staying alive, or are you trying to hit numbers?
I think it's more just trying to stay alive. My sister and I did not go on to a pump until we were a bit older when technology was a little more advanced. I think maybe we were 18. My brother to this day is not on an insulin pump. He still does multiple daily injections.
Mhmm. He has the CGM. But the first ten years, I think, were a lot of survival because I think trying to have the standard of keeping three type one diabetic children on your own in perfect control is just impossible. It's impossible with one child, let alone three.
No. I can't even I can't even imagine the the the the letdown you must feel in yourself as a parent when you look over and one of the kids has a blood sugar. You're like, okay. That's what I was shooting for, then the other one doesn't. And you probably feel like, oh, I let that one down.
And then you start doing the the thing in your head about the health and long term outcomes. And I don't your mom must have been out of her mind. I would've I might have been too. You know what I mean?
Yeah. I think I definitely would be because I have enough trouble, like, managing my own. I can't imagine having that kind of responsibility for somebody else's
Yeah.
Life, let alone your own, like, child.
For sure.
And then having multiple children, I just can't imagine how difficult it was. And it just it makes me realize how much of, like, a Wonder Woman she is.
Yeah. No kidding. Right? Well, do you have kids now?
Why She Hid It From Her Partner21:11
I don't.
Married?
I do have a partner. Yes. He I kept him very uninvolved for quite a while because I didn't want it to be a burden for him or anything he had to worry about.
Yeah.
Let me tell you, I don't think that's the way to go.
You should've let him in sooner?
Yeah. I think your partner definitely needs to have a certain amount of education around your diabetes because we've been in a few situations in the past where it was a little like, what do I do? Because I never taught him because I was so committed to not making it his problem. We've been together for nine years, so he's definitely learned a lot. That was probably, like, the first five years.
He's definitely starting to learn, and he does help me when I'm really, really burnt out or overwhelmed, you know, changing your pod at three in the morning or a sensor fail when you're out swimming. Or he does help me in those really stressful situations.
Well, I mean, imagine being in a in in a an emergent situation, you and your partner, and you're trying to help them. You don't have any idea of how to do that, and they're not able to tell you. But that must be a a feeling of lost and out of control that that's unmatched, honestly. Right? Like like if somebody yells, does anybody know CPR?
And you're the only one there, and you're like, nope. I don't. Sorry. You you know, and then somebody's standing there choking in front of you. Oh, my gosh.
So tell me a little more about why you kept it from him for a while. You you I mean, was it about I want this guy to like me, or I don't want him to feel like I'm a burden? Like, can you put words to any of that?
Yeah. It was really just I didn't want him to have to take on the mental load. It's, you know, the every hour, every minute disease. That's a lot to put on somebody else. And I was very committed to making sure that that wasn't going to be his problem or his worry or his issue.
And it really wasn't until the first scary low blood sugar where he didn't know, do I give her carbs? Do I give her insulin? That I was like, okay. So, actually, this is dangerous to our relationship, and it's time to do some educating.
Yeah.
So then we've really taken a different approach in the last five years, and he's learned a lot. Luckily, I'm pretty I'm pretty stable. Both my brother and sister are awfully brittle. I've never been in DKA. I've never had a low blood sugar seizure.
I've been very fortunate. Mhmm. So I kind of just thought I could keep pushing on that way, and there wouldn't be any problems. Do you do you have fooling myself.
You foolish. Yeah. You you you're not dodging this one forever. Like, you have to I don't know. I'm a proponent of just the people around you should know how to help you.
And not just a little bit, but really understand to their best of their ability. And I also don't have type one. I don't know what I'm talking about, really. Like, I'm just, you know, talking from an academic space. But, yeah, I mean, you do not wanna be in a situation one day where you really need help and the people around you who really wanna help you don't know how.
I mean, imagine if you if something dire happened and those people are now left with the idea that, oh, I was there and I couldn't I couldn't help. Yeah. It's it's I don't know. There's a lot to it, honestly. You should think everybody's gotta think of throwing their own and decide what they think.
But also, sometimes people have others around them that are not excited to help or maybe even good candidates to help, which can happen as well. But what I wanna understand is three different people, three same household growing up, you gotta make it through no Lantus at first, eventually get into pumps, insulin getting better, all that stuff. But the three of your cares probably don't end up blossoming the same way. Right? That's where it becomes pretty, I would guess specific to your personality, your drive, and your desire.
So how would you characterize your personal care versus your sisters versus your brothers?
So that actually kinda takes me into, a few things I kinda wanted to address, which, as you know, type one diabetes is not a, like, same situation for every type one diabetic. It's completely different in each person, and not one case is ever gonna be the same. And that even applies to, like, my sister and I as identical twins. You would think we would have similar scenarios, situations that our whole process would be similar, but it just wasn't. It was very different for both of us.
And I think that kind of goes back to, our birth, actually, because at the time, it wasn't a diagnosis, but we had something called TAPs, which is twin anemia polycythemic sequence. Big words. Wow.
TAPS: An Unequal Start26:04
I don't know what that means at all. Go ahead, please.
Yeah. Yeah. So pretty much what it means is that while we're being developed in the womb, our shared blood vessels became unequal. Where hers were much smaller than mine, and I was getting too much blood being polycythemic, and she wasn't getting enough being anemic.
Okay.
So your blood vessels in those situations as you're developing, they develop that way. So her blood vessels were developed small, narrow, and stiff. And as you know, type one diabetes is really hard on your vascular system. So she really just had double the challenges that maybe I did with more open and I almost had a safeguard in my in my vessels from scar tissue.
Because wait. So you had more than you needed, and she had less than she needed, basically?
Yeah. So it just, like, developed unequal
Yeah.
Where I was just getting too much blood, and it was thick like syrup, and she was just very anemic. What's the impact happens in twins.
It happens in twins. Don't let me stop you. It happens in twins.
So in '93, when we were born, haps they didn't know about haps until 2007, but they knew about twin to twin transfusion syndrome, which is kind of similar, but it's more acute. Big vessels transfer fluid and blood from one twin to the other, but it happens pretty rapidly. Where TAPS is more chronic, it happens early on, and it goes on throughout the pregnancy, and you develop that way. Mhmm. So they thought at the time that we might have had the twin to twin transfusion.
We didn't meet all the criteria, so we were never formally diagnosed. And then later, when they discovered taps, we met each criteria for the taps.
Jeez. And is there anything that they were able to do for either of you?
So I was very sick. My blood was too thick. It's really hard on your heart and your lungs. So immediately, I was my heart stopped pretty quick. They did.
A little CPR came back very quickly, and they put me on a ventilator. They tried traditional medications to help with my lung product like, getting my lungs to function, and that didn't work. And they pretty much were like, you know, it's in God's hands at this point. But they tried an experimental treatment for the lungs, and that did work. So I was on the ventilator, I think, for about six days.
They didn't move or touch me for the first two weeks because when they would touch me, my blood pressure would skyrocket, which is dangerous when you have thick blood. They were still doing the blood transfusions.
Oh, wow. So You just laid there?
Yeah. Yep. For about two weeks, and then they fed me for the first time, I think, at at that two week period.
Gosh.
What So for the
Can I I'm gonna stop you for half a second? You and your mom ever talk about this as adults?
We actually just recently did. Some of this is rather new, information that just wasn't out there in '93.
Yeah.
They're still kind of figuring out long term effects on pap's babies and the, like, lifelong effects that that has on on someone.
Mhmm. Brain injury, stuff like that can come. Right?
Yes. Is it So slow processing time. They're finding there's a link with caps to ADHD and organ. You can have issues with your organs, especially in the anemic twin
k.
Who had the lack of oxygen in their blood
Right.
Can cause long term deafness. There's there's a few long term issues. We didn't present with all of those, but it definitely structurally rebuilt our vascular systems very different.
Her Sister's Harder Road30:55
And then describe to me if you can, growing up through life, the issues that your sister had, any that you might have had.
So we were both diagnosed with hypothyroidism when we were, like, nine. We were pretty young. And then just anytime my sister got sick, she got very sick. And we'd both get sick at the same time. I would bounce back much quicker.
I just overall had a stronger immune system.
Mhmm.
And then into her teenage years, there were just these body aches and flare ups, and she'd get a virus, and it would be almost deadly to her as viruses are with type ones. They're scary. But everything affected her much heavier than it affected my brother and I. And that going into our early twenties, stuff started to get really kinda scary for her with her her blood vessels. She just had very poor circulation, which that combined with type one diabetes is a scary combo.
Yeah. Yeah.
She had sepsis three times. She had three strokes. She just really went through the ringer.
Three strokes from just the the limited blood flow, and do do do they know why?
One of them was from a clot, like, a scab. So she had a fall, and she hit her head and damaged some of the vessels. I guess they scab over. That scab can release and then cause a clot in the brain.
Jeez.
So I think that was her third stroke was from that. And I'm not completely sure what the first two what the first two were from.
Mhmm. In that time, into your early twenties, what would you say your diabetes outcomes were like? Do you know what your a one c's were or what you know, how you treated your blood sugars? Can you talk about that a little bit?
Yeah. So by the time well, our teenage years were a disaster. You know? You're going to high school and you are getting out of high school, and you wanna do what your friends are doing. You wanna eat what your friends are eating.
You don't wanna pull out syringes at the dinner table or when you're hanging out and you know? So our a one c's were garbage as teenagers. Into our early twenties was when we both were on insulin pumps and things got drastically better. I think my a one c was a 7.5, and hers was about a seven. So they were they were pretty decently controlled at the time.
On the pumps?
On the pumps.
You have any idea what a number would have been prior to that during garbage time?
Oh, 11.
Okay.
Yeah. They were garbage.
What? You were shooting were you regular on Miles per hour at that point? Did you go regular on Miles per hour to pumping?
No. We went from regular Miles hour. We did Lantus and Humalog, and then went on the pump about eighteen.
Okay. So even during Lantus and Humalog, what were you doing? Shooting the Lantus, but not shooting for meals all the time?
It was actually kinda the opposite Okay. Where the thing we would forget the most was the Lantus. And then we were in those kind of situations where somebody was out of Lantus and needed it, and we couldn't get it. And somebody had to, like, go to an ER or trying to get ahold of an endo in the middle of the night to see where we can find a twenty four hour pharmacy to get a prescription.
Cassie, is that is that a financial issue or just not somebody not handling ordering supplies correctly?
I think it's a bit of both. So my parents owned their own business. We didn't fall into the same kind of, like, medical insurance where you're on it until you're 26. So then at 18, I don't think any of us had medical coverage at 18. So there's a lot of programs out there where you could get a month's worth of insulin for $60 or but with three of us and my mom trying to find all these programs that can make it affordable until we could figure out, our next best step, which I don't know the nuances of it all.
No. Would you describe for me what the financial situation in the house? Would you have called yourself poor, working class, middle class, upper middle class? What do you what were you?
Middle class. I I would say, you know, I don't not so sure the classes really exist anymore. But
No. There's just two now. Yeah. But go ahead.
There was a lot of times where it was, like, money was doing really well. Mhmm. And then there were times where money was doing really bad.
Little feast investment kind of thing going on. Like, the business would do great. We'd do a little better. We're going on vacation. Everybody's eating, that kind of stuff, and then it goes the other way?
Yeah. Exactly.
What kind of business? Like, not the name of it, but, like, what kind of work?
They do, like, audits and pre OSHA inspections for, like, construction sites and schools, that kind of thing.
Okay. And do do your parents oh, your dad's alive still or your mom? I know your mom is.
Yeah. They're both alive. I'm pretty estranged, like, from my from my dad. We don't have much of a a relationship just from stuff growing up. But they still own the business together and run the business together.
My brother's also working there.
They're married still?
Wanna work with family. No. They're not.
They're not married. They run the business together. Yeah. Wow. That must be fun.
Oh, yeah. A lot of fun.
You you you But and now listen. I can't imagine that if you're estranged from your father, I can't imagine your mom is okay with your dad. Is that right?
I think she sticks around for my brother.
Her Brother's Addiction, and Prison Diabetes37:23
For your brother. And there's a part about your brother that we haven't talked about yet. Right? Is he he has he struggled in other ways?
Yeah. He struggled with addiction for quite a few years. He'd have these time periods where he'd be clean for six years, like, in between, and you kinda get that feeling like, okay. Everything's gonna be okay. Mhmm.
Like, everything's okay now. And then his last stint of addiction, he did end up going into a correctional facility. He was charged for drug trafficking and possession of drugs, and his care in there was just it was just awful.
Yeah. I've only interviewed a couple of people who have been in prison with type one, but it doesn't seem like it's set up for success. That's for sure.
No. They checked his blood sugar twice a day, 7AM, 04:30 in the afternoon. They'd give him insulin before they knew what he was gonna be eating. So there was no carb ratio put into place. They were still doing Humulin and Humulin r, which everybody knows is very old school.
It might keep you alive. It's not gonna prevent complications. And he developed retinopathy, neuropathy. He had five or six different low blood sugar seizures.
Yes.
He had to provide his own low blood sugar treatment from his commissary.
Oh, they didn't they didn't see that as medication?
Apparently not because they wouldn't give him glucose gel because of the high sugar content. They were afraid people were gonna use it to make alcohol.
Oh, I guess there is a different set of concerns in prison. Am I so your parents are running this business to give your brother a place to work and to help themselves financially. Is that right?
I think they started it together, and they both just love it. Like, it's their baby.
I see.
They both grew it from the ground up. It's been what they raised us doing and what they bought their house doing. And I think it just meant so much to both of them
They wanna lose it.
That neither one of them could walk away. But now that my brother is so heavily invested in the business, I think my mom's a little hesitant to walk away as long as he's still there.
It's providing stability for him.
Yeah. A support system, I suppose. Mhmm. Hard question. It's tricky.
Yeah. Yeah. Hard question for you. Okay? Your sister's really sick most of her life.
She's a lot I mean, a lot of issues and passes away. You all three have type one. Your brother had addiction issues. Do do you have any idea what was it the stress of all that that broke your parents up, or do you think it was something else or a mixture?
I think it could be a combination, but I think a lot of the issues were going on before the the diet.
Yeah. I didn't mean that they were the Brady Bunch, then you guys got diabetes. That that's not what I was saying. But but I but you think is it a I don't know how to ask this. Like, do you think that the the thing hey.
There's no way for you to answer this question. I don't know why I'm asking you, but I'm gonna finish it now because I started. Their collection of issues without three kids with health issues, do you think they would have been okay?
No. I don't.
No. They were they were on their way about it.
Their outcome probably would have been about the same with us in the picture or us not in the picture. They were just other things going on that I think made their separation a little bit unavoidable.
Gotcha. I heard I heard what you said. I think I know. I'm not gonna guess out loud, I think I got it. Sorry.
No. That's okay.
No. I mean, I I grew up in a shaky household too, so I I'm sorry for you. My god.
I know. I'm trying to tiptoe because I don't wanna hurt anybody's feelings.
Of course. No. You're doing a good job.
At the end of the day, you know what? This isn't really about them. This is about me sharing my story.
So Yeah. It's your life. You know? They were they made themselves characters, and the the kinds of characters that they were, they could've they could've made themselves different characters. You know?
We all could. We could all do that. Wow. Okay. So when you go to a pump and your a one c comes down to the sevens, do you and you're in your early twenties.
Are you in college? Are you working? Where are you at in your life?
Oh, I started the pump at 18, and, actually, they would not put me on the pump until my a one c was a seven. They said if I couldn't get my my shit together or under control, that a pump wasn't gonna make the difference. They wanted to see I could do the work first, which now makes absolutely no sense to me.
I come down on the side of that's wrong, but go ahead. Yeah.
But this was the older generation of endos, very scare tactic oriented, you know, would come in with a picture of, like, somebody with a missing foot or a a eye and be like, know, do you want this to happen to you? Mhmm. The old generation of endos were a little harsh. Glad that there's been a big shift in that and a big change, but I did I did the work. I really went to work with the multiple daily injections at 18 and got onto the pump, and it just made a world of of difference.
My sister very shortly went on to the pump right after me. So then we both were in pretty good condition with our diabetes at the time. I was in training to be an EMT. I was doing trades at the time. Mhmm.
Never felt like college was gonna be a good fit for for me because I struggled a bit in high school.
Mhmm.
So then I was like, you know what? Let's give trades a try. So that's what I was doing at the time. My sister was very sick at the time. She was working part time at a greenhouse.
She loved plants. She loved plants. She loved gardening. That was, like, her whole life, being in the sun. So that's kinda where we were Yeah.
About that point.
Getting Serious — and Every Pump There Is43:50
What made you serious about it? Like, why like, how could you if someone if you say, I'm gonna get a pump, and they go, no. You're not getting a pump until you lower your a one c by four points. What makes you what makes you do it? Like, how did you accomplish that?
You know what I mean? Like, something had to change in you that make you wanna do that. Right?
I think I was moving out of I was kinda moving a little bit more into adulthood, and everything gets more serious. And they're like, oh, this isn't, like, a game anymore. Like, it's hard to be afraid of long term complications because you're not seeing them in the moment. Mhmm. But I just got so tired of feeling bad.
Okay.
And feeling bad became so normal. And then I was struggling to go to my classes, and I was struggling to do the physical part of my trades with lifting people and things like that. And I was like, I'm just kinda I don't wanna feel like this forever. And it just made me get a little more serious about it.
Yeah. I guess I don't wanna be trod, but you were sick and tired of being sick and tired?
Yeah. Exactly.
That's where that saying comes from. Okay. And so you buckled down, did what they made you do, got the pump, life got better, etcetera, so on?
Yeah. My diabetes has been pretty well controlled, like, since moving to a pump, and, man, have I tried all the pumps. I'm on the Omnipod now. Love it. It's been my favorite.
My a one my last a one c was a 6.5.
Good for you.
It's never been under a seven with any other
You're on me pumps. You're on the pod five?
Yeah.
Have you gotten the update yet for the 100 target?
I did, and I just did the update yesterday. Oh. And then I wasn't quite sure what to do from there.
Set your target to 100.
Okay. I was just like, does it just do it automatically? And then Hello.
It's thing. Thing. Are you doing it? Are you doing it, thing? No.
Go into
your go into your settings
and make your target 100. Why doesn't the thing know, Cassie? I mean, come on.
No. I told you. I'm challenged with technology.
I mean You you Cassie, had something happen when we were setting up. Let me tell them real quick. So when I'm trying to figure out like, sometimes people you know, it's very nice to people to come on here and do that do this, but, like, I don't exactly attract a crowd of people who are always making podcasts and stuff. So they cobble together, you know, microphones or headphones or whatever. And when I'm trying to see if they've properly turned their mic on that they're wearing or is, like, you know, their laptop mic being used, I'll often say cover the microphone with your hand because Cassie's voice was really dim and low.
And she covers the microphone with her hand, and her and her voice gets louder. And I'm like, wait. What what's happening? And she's like, I'm challenged. But but, no, seriously, like, yeah, move your do you know where your target is now?
Yeah. I think my target is One the one yeah.
Okay. Make it a 100. I'm I hear from people who are using it that it's a it's a it's not just the target that they changed. Some other stuff got changed too, And people are seeing a real difference, so give it a whirl.
I'm definitely going to. I was, like, trying to gather notes for for today so I didn't come in here and talk about, you know, my own stuff and sound like an idiot talking about my own stuff. And I was like, that seems like tomorrow's issue.
Isn't it? Isn't it hilarious?
Do that tomorrow.
You say to somebody, like, what's your basal rate? They go, I I don't know. I'm like, well, if you don't know, who knows? Right. Yeah.
No. But seriously, I would also, let me say, not medical advice. I'm just saying I would move it if I was you. And while we're dropping in disclaimers and links, omnipod.com/juicebox to learn more about the Omnipod five. Please support the sponsors.
Links in the show notes. Links @juiceboxpodcast.com. Okay. Now, Cassie, we'll move forward. Yeah.
Part of the thing we talked about earlier, I have to I will I will say this. I don't I'm gonna use the word hate for a second. I don't hate that there are great companies that support the podcast. That that's fantastic. I wish that it wasn't part of my life to have to remind you all that if you don't use those links, if you don't download the show, if you blah blah blah, then I can't keep it going.
And it because it sounds like crap. I know it does. Like, I because I've heard people who make YouTube videos, podcasts, etcetera, they say the same thing. When they're saying it, my knee jerk reaction is, oh, shut up. Like, leave me alone.
Like, that's not gonna make your podcast fault. It will. Like, it absolutely will. But it's a hard thing to hear from a listener position, I think, because I don't have a good reaction to it. And yet I find myself saying it, which is I don't know if that's an oxymoron or not, but I feel like a moron when I'm doing it.
I can tell you that much. Okay. So we'll get your we'll get your goal down your target down to 100 and the Omnipod five. You said on the other pumps, were never able to get under a seven?
Yeah. I would say the closest I got was exactly a seven, and that was with the t slim. And I really thought for a while that technology couldn't get better than the t slim IQ control closed loop system Mhmm. Because it was so life changing to me. I went on the the t slim after I was on the Medtronic, you know, with the Guardian sensor.
Yeah.
I hated the Medtronic.
You did it all. I
did. I started on Animus, and then went to Medtronic, then went to the t slim, and then I tried that new pump, the the bionic pancreas Did you really? On that.
The beta the islet?
The islet, and that tanked my timing range. I went from 80% down to 55% on that one with
the six that for? Six months.
I gave it a year. A year? But after a year, I just, like, finally told my endo, like, I can't I can't do this. Like, it's not working. And he was able to write to my insurance to be like, yeah.
The warranty thing. Like
Yeah. We'd like to switch back, please. That's crazy. Yeah. Well, they're not sponsored, so I'm okay with that.
No. I mean, I'm just joking. I I think sorry. No. Don't be sorry.
I think that first of all, I think that all of the of the pumps that are are represented here on the podcast by by ads, they weren't they weren't just taken because they weren't interested in making ads. I think they're all very good pumps, and and I believe they do a good job for people. I do wonder just Yeah.
Finding the one that works for you.
Yeah. What works for you I would also guess too that your knowledge of diabetes has gotten better over time. Like, I would Yeah. I hope so. Yeah.
Right? Like, so have you been listening to podcast for long?
I started listening to your podcast, god, probably about a year ago. It hasn't been been crazy long. I know you've been doing this for a while.
Mhmm.
I listened to one not that long ago. That was from 2018.
Oh, I've been doing this for twelve years. The this, I guess, started
in long time.
2015. Did it start in 2015? Yeah. In January. But my point being, is it possible that over like, watch.
How long you've been using Omnipod five?
I've been on the Omnipod five for only about eight months, I think.
Is there an argument to be made that the podcast is the reason you're doing better? I don't wanna take anything from Omnipod. But is
The Podcast as a Support System51:42
there No. I I do think that because not only did I keep hearing people talk about the Omnipod five, I found people who learned how to use the Omnipod five through your podcast.
Okay.
And then I one of my best friends is also a type one diabetic. She lives in Florida, and she's been on the Omnipod for years. And for so many years, she kept telling me to do it, but I was so attached to my t slim.
Mhmm.
It was like, nothing's gonna get better than the t slim. And then finally, I gave it a go and was like, this is the best pump I've been on. I've been on them all.
Awesome. I'm gonna go out on a limb here and say something I don't have any idea if I'm right about or not. But I bet you if today Cassie wore the t slim pump, she'd have a six and a half a one c. And I bet you if today Cassie went and wore the seven eighty g from Medtronic or is it MiniMed or Medtronic? I mean, you guys you got.
If you go wear the MiniMed seven eighty g, I bet you'd have a six and a half a one c. I bet you're just better at it now. I would also argue that people who listen with some consistency stay stay engaged with their diabetes without feeling focused on it. That's the that's how I hear back from a lot of adults. When I listen, I just do better.
I couldn't possibly tell you why. But I also don't find myself thinking about it more. I find myself thinking about it less, but doing more. I don't know if any of that, like, resonates with you. But
No. It it does. I think in the last year, something that I was always a little bit, like, you know, it's not that important was pre bolus. Like, I used to always kind of bolus be like, oh, yeah. I'm gonna eat in, like, three minutes, and I would bolus then.
And now I really make sure to take the time to do it twenty minutes or fifteen minutes ahead of time, and it it really just made a world of difference.
Yeah. And that's from the the podcast.
Yeah.
Alright. I don't wanna break Omnipod's heart, but, obviously, I'm the one that fixed this.
Clearly. Scott gets the credit here.
I mean, really, it was me. I get you. Also, now I realize when people say that I'm direct and that they find my confidence unsettling, I now know what they're talking about. But I don't see it I don't see it that way. What I see is that, like, very simply put, I've, in the past, tried to lose weight by myself, and I've tried to lose weight with support.
And with support, it goes better. And I've also tried to lose weight with support and assistance from technology, and what do you know? That even works better. So my point is that the podcast is a support system for you.
And it's Absolutely.
And you get dribs and drabs of information or ideas or concepts. You start applying them without even maybe believing even knowing that you are so much so that when a year later comes and you say, hey. What's going on? Why is your a one c a six and a go, let's say, Omnipod five. And and I'm telling you that I think those algorithms are all great.
Metronicdiabetes.com/juiceboxtandem oh, wait. Metronicdie yeah. And tandemdiabetes.com/juicebox omnipod.com. Just like That they're all they go find the one do. Go find the one you like the best, but know how to use it.
That's where the real success is gonna come from.
You gotta be honest about the Guardian, though. The Guardian sense
Oh, that old center.
Yeah. Well, there's a reason they got rid of it. They they don't make that anymore, do they?
It was pretty awful. I don't know. I, like, I don't know why they had so quick and never looked back.
No. So yeah. I mean, listen. I think I believe that the CEO of the company was on here and said that we called it the and when I said people call it the harpoon, she was like, yeah. Yeah.
Yeah. But I don't think anybody's saying otherwise. I will tell you you've never heard the harpoon? No. Okay.
Cassie, I would also tell you this. And I mean this, and I've been saying this for years. Anybody can look back and hear me say this because I'd make fun of Metronic because the thing was a harpoon. But they went first, and you gotta respect that. They made a CGM.
You know what I mean? And Mhmm. The insertion process was not great. And even the usability, you know, where you're, like, having to, what, you had to always put in the blood sugar and stuff like, it's not great. But it got everything going.
And now here we are, what, three plus Libre, g seven fifteen day, the Simplera Sync is the one that Medtronic has now and the other they have another one too. Right? Medtronic actually has two options now. The Instinct sensor, it's a fifteen day sensor. It's Simplera Sync that works with the MiniMed seven eighty g.
And now Eversense has their implantable CGM. Like, you know, respected Medtronic for going first. You don't first to the door is the one that gets shot. You ever heard that one? So
So I think, like, the closed loop system is really what changed the game. The closed loop system really, I think, is what came in, like, made life so much so much easier. Sure. I don't know much about the implant or if the implant works with the closed loop system yet. I like the idea of the implant.
It does scare me a little bit.
But you're But you're intrigued?
Of it. But I'm intrigued by it. Yeah. I definitely wanna learn more about that, and I have a little bit. I've also learned a little more into I've heard a lot about the twist.
Yeah. Twist Twist loop.
Months ago, I didn't know anything about.
And you love jumping around bombs, so it won't be long for you.
I know. I don't know. I'm pretty committed now. I love not having a tube.
I I listen. I I think that tubeless is a great option. A lot of people really like it. It's not a you know, but there is other companies making other stuff. You're gonna see a lot of things happen.
Also, I don't wanna seem like a show, but twist.com/juicebox has two eyes.
I walked you right into it. Oh, thank you, Cassie. I appreciate it. But I think
You want the same thing nice about Dexcom, US Med? Or the contour next gen?
You know, I've always wanted to try the fifteen day Dexcom. I haven't tried that
yet. Dexcom.com/juicebox. You're so funny.
Yeah. I think .com/juicebox.
Oh my god. You but listen.
What else can I throw?
I'm trying to joke around here, but I hope those of you who listened to me earlier look into this. Like, this is what it takes to keep this going. Like so if you're like, hey. The podcast is great. It's a like, listen.
You know what I mean? Like, it's a it's a ton of work and it's a ton of, like you have just you just have no idea. Like, I know it's easy to, like, flip on YouTube and be like, oh, look at that guy. He's probably making money or whatever doing this thing. It's a slog, man.
I mean, it's not it's not I used to work in a sheet metal shop. I'll do this any day of the week. Okay? It's fine. But the pressure to keep it going and the orbit around it that supports it and makes it possible for me to, you know?
I mean, you you have no idea about my day yesterday, but I will just tell you that I had to I had to start editing the podcast yester this week on my own again. And I've been head down at my desk eighteen hours a day or twice five days in
How's your neck feeling?
It's not. I actually walked downstairs with my wife, and I was like, my back is so sore. Why is my back so sore? My back hasn't been sore forever. I started complaining.
I was like, since I've lost weight, my back hasn't hurt my back right now. She's like, you've been sitting in that room for four days. And I was like, oh, oh, okay. So it's just, you know, I don't get outside. I actually had a moment.
I did a thing for myself yesterday. I I spent a couple of hours in the morning doing something I had to be in my car for, And this it was beautiful. The sun was out, wasn't humid, and I was, like, out in the world at, like, 8AM, and I thought, I haven't been outside at 8AM in forever. Like, this is this is nice, you know. I was like, anyway, I'm we're not here to complain about my life.
My life's fine. Point being, support the sponsors. And the pumps nowadays are all pretty great, and I think the next step is your understanding of how to use insulin, how the food is impacting your system, how did you make changes to your settings when you need changes to your settings. That's pretty much it.
Yeah. Well, it's a lot. It's just so much to learn and but, you know, it it's amazing how quick things are changing.
Oh, yeah.
Just I feel like every day, I'm reading something and I'm like, oh, that's amazing. Like, I was just reading about what's his name? Alec Alexander the tennis player?
Yeah. Yeah. Yeah. He won the US Open
the first yeah. He just became the first grand slam single title holder as a type one, like, breaking out there breaking records.
Yeah.
A lot of people on your podcast are out there doing really incredible things. Yeah. A few I was reading about or listening to, like, in the mountains, snowboarding, and just really out there doing incredible things that I'm not sure would be possible without a lot of the new technology.
Do you know a type one pilot's the space station, the International Space Station?
I did not know that.
Yep. She's been on here. She's very cool too. Her name's April. And, yeah.
Breaking records all over for type ones, and the technology really kinda makes that possible.
You watch baseball?
For us. I don't recently. I used to be really into baseball.
The, the closer for the Padres. Mason Miller? I think he throws, like, a 102 miles an hour or something like that. He's type one.
Yeah. Look at that. Like, just doing what other people can do. And I know there's some nuances to it with others who also have other autoimmune disorders. Yeah.
Makes it, you know, a little more
Challenging for some. Hey. Listen. My daughter's going to college with it. You
know? Yeah.
Her friend is in college. She has type one. They Arden has two friends in college with type one. And college isn't easy. And diabetes isn't easy and each makes the other thing more of a challenge and people are out there doing doesn't always have to be like I throw a baseball, you know, a 100 miles an hour or I, you know, I fly a space station.
I think it's, you know, a wide range of people who are out there just living life and doing a great job and, you know, trying to do better for themselves and while these technology companies are getting better. But your point about things getting better faster, I think that's incredibly exciting about around what kind of technology is gonna pop up. And and even so, the technology doesn't have to be the way we used to think about it, which is like, you know, you have to make a new thing. That's technology. Now the technology lives inside of the thing.
And that's much easier to update and improve and get out into people's hands. So I'm I'm expecting I'm expecting I'm expecting all the companies to keep going. Right? MiniMed, I think they're gonna make improvements to their thing. Twist, I would hope would bring out another version of the Twist loop, which I would imagine they're trying to do.
Omnipod six, I've already heard people talking about. Control IQ, they just got FDA approval for pregnancy. You know, on and on and on. That Senseonics, the Eversense CGM, the implantable CGM. You know, when it came out, it could be in for, I don't know, three months, then it was six months.
Now it's a year. Like, woo hoo. You know what I mean? Like, let's go. And that that stuff happened in much quicker much more quickly than I've ever seen in the past around diabetes technology.
Scared Straight: Living for Both of Them1:03:21
It's crazy to think where we're gonna be at in a year. I do kinda wish I could have seen how much this new technology would have impacted some of my sister's health issues. I know, like, her passing really kinda scared me straight as well. It was really like, okay. Major life changes need to happen.
How? What what what adjustments did you make?
I just started eating a very solid regular, like, diet. I stopped going through my weeks like, oh, what am I gonna eat for breakfast? I'm just figuring it out then. I started planning ahead of time my entire week of what I'm gonna eat for breakfast, lunch, dinner. I know exactly how many carbs I'm gonna get at those times throughout the week.
It keeps it consistent. It's helped me greatly. I've just started getting more physical exercise, getting out into the sun more, concentrating on the basics that people forget about, like diet, sleep, water, sunshine, that all make a major impact on our lives that we kinda push to the side. Like, oh, it's not that big a deal, but they're our baseline for functioning. And I quit I quit drinking soda, which I did only drink diet, but it's like, you know, I'll let myself here and there, but not every day like I used to.
Mhmm. And it just really got me into doctor's appointments more frequently and keeping an eye on things because there's always this baseline of, like, we're identical. What happened to her could happen to me. And things pop up where I'm like, she went through this, so it's happening. Yeah.
Like, it's starting to happen. I just had a real scary event with my with my kidneys where every time I get my kidney function checked, it's my worst fear to open it, and it'd be, you know, below that 60. And just recently, I kinda went through that, and I opened it, and it was 30 because I was on an antibiotic called Bactrim, which in some people can cause their kidneys not to filter protein or not protein, potassium. So then my potassium levels were really high, and they told me, like, go to the emergency room right now. And I was like, this is it.
It is it's happening. Like, this is how it started for her, and now it's happening to me.
Mhmm.
And this was just three weeks ago.
Cheers.
Within three days of coming off the medication, of coming off the Bactrim, my kidney function is completely normal again. All my levels were completely normal. It's just crazy. One time didn't
forget pause. You didn't forget the fear of it, though?
I didn't forget the fear, and the entire experience was a little triggering, and I would even say maybe a little traumatic. I think medical trauma goes a little unseen.
Oh, yeah. You start feeling like you're gonna Yeah.
Yeah. And there's just this constant reminder that I share an identical DNA with somebody that had a bad outcome. So it makes the everyday life a little bit different.
Can I tell you something that I found really encouraging about that little bit of your story? Is that I so often hear people say that they're doing things for other people, but I heard you say I'm doing this for me. And I thought that was awesome. Like, I really did. Like, I when you started talking, I was gonna ask you a question.
I was gonna say, do you think that you're doing it because you wanna be healthier, or you think you're doing it because your sister can't do it for herself anymore? But as you kept talking, I thought, no. Cassie's doing this for herself. Like, she's trying to pull her her stuff together. Good for you.
A little bit of both. Yeah. Because I feel the responsibility a little bit of living for for both of us. Mhmm. There is this whole trying to figure out how to be a me when I've been a we our entire life.
That's been very, very difficult. It's a very lonely process. It's a very unique situation to be in that there's not a lot of support for. Yeah. And nobody really understands unless you are an identical twin.
So now I have this strange tether where it's like half of me is wherever she is, and the other half is here. And that tether almost kept me stuck in one place for a little while. Still does a little bit. And now I'm kinda like, I have to do what she didn't get to do. I have to, like, live long enough and be healthy enough, not just for me, but for both of us.
Because moving forward as her other half, whatever I'm doing, she's doing.
Yeah. Death is an abstract until you experience a it's just a thing that you no one really I mean, we know we're going to die, but we don't think we're going to die. Do you know what I mean? Like, you do not walk around thinking like, oh, life's gonna end. And then someone's life ends, it it's impactful.
But when that person is your sister and looks just like you and shares, like you said, your DNA, boy, I'll I'm if this didn't do it to you, you called it scared straight. But if it didn't do it to you, then nothing was going to. Because, I mean, I can't Exactly. Oh, I can't imagine anything more impactful than this, honestly.
It has this strange bittersweet, like, thing to it where it's like, the worst possible thing that could have happened to me already happened.
Mhmm.
So it definitely pushes me forward with a little less fear and a little less anxiety on that aspect of it. There's also this aspect of getting to know myself in a way that I never had the opportunity to.
Yeah.
I never got to know myself as an individual, which
Interesting.
If I, you know, could go back and choose, I absolutely wouldn't. But that's been an interesting an interesting journey
Yeah.
Of really trying to get to know who I am as just me when it's always been us. And I miss it more than anything. I miss her more than anything. She was my best friend in the entire world. We shared so much.
When you grow up with someone the same age as you, literally from day one, you share the same kind of you learn empathy very young. You start to understand feelings very young as you're bouncing it kind of back and forth with somebody who's the closest person in the world to you.
Mhmm.
I don't know if the twin thing, like, really exists, but I know her and I definitely had a shared empathy where I could understand her and understand what she needed. We didn't always have to talk about it.
Yeah. I'm interested too in how you're able to accept the gifts that come from her passing without I don't know. I really don't know. Like, it's it's tough the gifts are coming from such a tragedy, but it would be easy to just, I don't know, not pick them up because it felt wrong to take them, but you're you're taking them, which to me says they're not being wasted because there are things you're getting out of of her not being here any longer. And instead of ignoring them because it's uncomfortable, you're you really are paying attention to them.
Therapy, Scott. Therapy? Gotcha.
Therapy helps a lot. But, yeah, it it does seem like a waste because it's, like, ignoring anything positive that could have come from that, I think, would be ignoring an entire part of her almost that was lost in all of this.
Cassie, you're you're in your thirties. You're in your thirties, Cassie. Let me put this into terms that people your age can understand. Black Widow gave her life so Hawkeye could go back to his family. He's got right?
Okay. He's gotta go do that now, or what she did is wasted.
Exactly.
Yeah. That's all. Everything see a Marvel movie. I fixed it for you with what was that? Endgame?
I don't remember exactly.
It was Endgame.
It wasn't? Oh my god. Apparently, I do remember, and I knew you would know because of your age, by the way. Those movies were so good. Not good like, you know, War and Peace good, but they were good.
They were good.
Yeah. Yeah. Yeah. Any and, anyway, how much therapy did it take for you to accept that?
Denial, Therapy, and Starting to Face It1:12:03
So I spent quite a few years kind of in denial a little bit. Mhmm. Kind of in this state of disassociating where I was rather manic. I was drinking a lot. I was partying a lot.
I was going out and just kinda being crazy. And I was completely disassociating from the experience, and I was kind of not even thinking about therapy. And then I had a moment in I wanna say it was 2022. It was the summer of twenty twenty two where I kind of looked back at this trail of destruction I was causing from dissociating from what was really going on. Just people around me that I was hurting with my actions or my words without even realizing it because I wasn't fully here.
And it scare being that way scared me so much that I immediately got a therapist. I immediately got a psychiatrist. And at first, they thought I might have been bipolar or and it was really just trauma. It was really just disassociating from this experience that I couldn't even imagine beginning to deal with. And I honestly haven't started to until until maybe six months ago is when I've really been able to start talking about it and focusing on it in in my therapy and really starting to kind of accept where I'm at and the fact that she's not necessarily here with me.
She is, but she, you know, she isn't. Yeah. And I couldn't face that. For a lot of years, I couldn't face it.
I can't imagine, honestly. It it's the that you're having an incredibly unique experience. You know? Well
It's unique, and there's not a lot of there's not a lot of resources for it, which is why I felt that it was kind of important for me to find a platform.
Yeah. I was gonna say that's what led you here to do this. Right?
Yeah. To not only talk about the the diabetes and the health issues, but to bring a little of awareness to twin loss because it is complicated.
Well, I mean, I looked into taps a little bit while you were talking, and it I mean, it's not a thing that affects a lot of people. You you know what I mean? Like, so when when you're having something that unique happening to you, the support system around it is gonna be, I mean, shaky, you would imagine, you know? And then moving forward, living as a twin is not a thing that, you know, a lot of people, you know, have experience with losing a twin is even less so. Having medical issues prior to that, sharing the medical issues, some of the medical issues, you are in an incredibly unique situation.
You did a really good job for yourself getting out of this.
I've done the best I could. There's been the TAP stuff has been rather rather recent that explained a lot of unanswered questions.
Mhmm. Is it important to get those explanations?
You know, I I do think I'm gonna have some closure with it because for the last five years, we're kinda like, why did this happen? Like, why did her kidneys fail? Because they biopsied the kidneys and said it was not diabetes related. And they diagnosed her with lupus along the way. They never really thought that was what was causing the vascular issues, and they just never really figured out what was going on.
Ultimately, she got an infection, got sepsis from that infection, which sepsis has a forty percent mortality rate. So that's kind of what what happened there. And it was during COVID, so they weren't letting anyone into the hospital. There was two weeks, which is the longest we've ever gone without talking or seeing each other, where they weren't letting me in to the hospital to be with her. And then by the time I did, she was in a coma, and I never got a chance to talk to her.
But they pretty much told us there's there's nothing we can do, and you guys need to decide if you're gonna take her off life support or keep her, you know, in the state where she'll probably die anyways because nobody's gonna operate on her in the state she's in.
Saying Goodbye1:16:14
Or a situation.
It was a very unanimous decision between her husband, myself, and my mother. And I laid with her, and I held her when they took her off. And it sorry. It's the first
Oh, you're gonna
make me time I'm about this.
Starting to cry. Just keep going. You're fine.
And I felt the I felt the energy leave, and I knew. Yeah. I knew when she wasn't there anymore. And then there was this sense of guilt that I had for not only still being the one here, but why this happened to her and not me, and then looking at the caps and being the receiver, being the one that, like, took all of the blood and took all of the there was a certain amount of guilt that has come with that that I haven't quite worked through yet.
I have to tell you. When I was reading about the Taps, I thought whoever named these arms of this really wasn't thinking about the human side of it. Like, why would you why would you couch that this way? Do you know what I mean? Like, the receiver is Yeah.
Yeah. Yeah. Yeah. No. I hear you.
I hate that word because multiple reasons. Growing up, my grandma was always like, you know, Cassie, since birth, you've always been the fatter twin. And things like that and it's true. All the way through our relationship, I've always, like, weighed more than her and whatnot, but it just stemmed from that. Like Yeah.
Stemmed from the difference in her size at birth and her health conditions along the way that there was nothing they could have done than any ways to have changed the outcome. What's also
even saying you. Like, right, like, you took, you were fatter, you were it's not like a conscience it's not like it's not like they came and found the zygote, and they're like, hey. Would one of you like to take and one of you, like, get taken from? And you were like, yeah. Me.
I'll do it. Like, you know what I mean? It's not really you. It's just the it it I don't know. It's got nothing to do with you.
It
it It doesn't. Yeah. Rationally and logically, I know that. I know I made no decisions in any of this and that none of it was my fault. Mhmm.
I think that one's just gonna take a little more a little more time, especially because I am just kind of recently starting to work through some of this. And it being just, you know, a couple days away, you kind of your body knows even if you don't.
Yeah. Like You're
kinda like, what's wrong with me right now? Why am I acting weird? Why am I so tired and depressed and whatnot? And then you're like, but it doesn't have anything to do with that. So it's like, there's still a part of me that can be in real denial about it all.
Yeah. You're not drinking anymore, are you?
No. Good for you. Occasionally, the weekends, but never more than one or two. And I'm looking into taking LDN, the low dose naltrexone for base level inflammation. So there's no drinking with that I mean is fine.
Like a perfect person to go to Hopkins and ask about that MDMA therapy.
I think I would be really about that.
Yeah. You would think that they'd be like, wait.
Let's just enjoy that.
What's that story? Yay. You're in. Let's go.
You have both. Make me feel happy? Okay.
I don't know. They say it just make makes your trauma melt away. I don't know. So I don't know if that's true or not, but it's what it's what everybody's saying. I can't thank you enough for sharing this with me.
I've I've struggled with what to call the episode. For a minute, I thought I wanted to call it tired of sick and tired, but I might call it trail of destruction. I don't know if I I'm not sure why.
It does feel that way.
Yeah. It's good. Well, you I that's a phrase you used, and and I thought, well, that might be right. But you're not on that trail anymore. Right?
You wouldn't think of yourself that way.
No. Not at all. I'm very hyper aware of myself and my actions and my words. It's just, you know, at some point, you do have to look back and realize the damage you caused and not run from it. But face it and face everything you're going through.
And, you know, your body does it to protect you, which it's like, thank you, but no thank you.
You know how I know But when the con you know how I know a conversation's going well? When you're speaking or the person I'm talking to is speaking, I have my thought. I'm like, oh, I wanna say this next, and then you say it instead. And that just happened. You I I thought, you gotta face your shit and I'll hold that thought.
Let her finish her thought and then I'll I'll chime in with that. And then you just said it instead. And so, yeah, maybe you just have to maybe that's the it. Maybe that's the title of this one. And I can't put shit in the title, though.
Face yourself? What do you think?
Well, you know, you did say that that's what you do best. So I'm gonna leave that to you.
See, why would that's horrible to do to me at the very I was giving you the chance to name this episode and just left me
I'll never come up with one better than behind the cheese.
I am a genius.
I hear genius title. I hear It pulled me right in.
I hear what you're saying. I am thrilled that you only found the podcast a year ago, and it feels so valuable and present to you that it doesn't feel like an old thing you found in a closet that still is fun but smells weird. And that that means a lot to me that the podcast is is is producing at a high level still this far into it. I'm gonna take that from this and a lot else, by the way. So thank you very much.
I guess we'll find out what it's called when it comes out. But if you'll hold on for just one second, I just need to tell you a couple things after we're done recording. But thank you.
Thank you for giving me this opportunity to bring awareness. And this was also pretty healing for me because I haven't talked about a lot of this, yet. So
I'm glad.
This was a very healing experience for me. So I appreciate you having me on and giving me the platform to do so.
Well, congratulations on facing your stuff. I think it is commendable and not a thing that everybody, can make happen all the time. So you you you took a huge step. Yeah. You're welcome.
You're you're saving your life, you know. Hold on one second.
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#1896 Mean as a Snake
Mean as a Snake
Diagnosed at 13, she took her CGM off one beach day and never put it back on. Three years later: fingersticks only, low-6s A1Cs, and fierce independence.
Jump to a moment
- Great numbers, no CGM. Diagnosed at 13 and three years in, Allie’s daughter manages entirely on multiple daily injections and 10–12 fingersticks a day (~400 strips/month), with A1Cs from high-5s to low-6s (her worst was 7.4). Good management doesn’t require any one piece of technology.
- The tradeoff of no CGM is the lows you can’t see coming. Allie’s main worry: without a sensor to “catch the fall,” her daughter often doesn’t treat until she feels a low (50s–60s) rather than heading it off in the 70s.
- Autonomy over pressure. After a beach “sensor break” became permanent, Allie chose not to force the CGM — fearing a fight would cost more than it gained. Instead she gives space, shares info in small pieces, and lets slow buy-in happen (her daughter has now agreed to try an Eversense 365 at night for college).
- Recognizing new-onset type 1: the tells were a sudden return to a giant water bottle (thirst) and repeated overnight bathroom trips. Her pharmacist mom confirmed it at home with a drugstore glucometer (blood sugar in the 300s) before heading to the ER.
- A practical MDI tool from the show: for a reliably low-carb school lunch, they use R (regular) insulin dosed as she leaves for school to cover the slow, steady rise across the day — one example of matching insulin type and timing to the meal.
- Bold Beginnings Series — for the newly diagnosed, with Jenny Smith (verify slug)
- Small Sips Series — short episodes Allie shares with her daughter (verify slug)
- Diabetes Pro Tip Series — foundational management series (verify slug)
- Eversense 365 CGM — the year-long implantable CGM she’s pursuing for college
- Touched by Type One — programs, annual conference, D-Box, Dancing for Diabetes
- Afrezza (inhaled insulin) — ultra-rapid inhaled insulin Allie is seeking approval for (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 Allie0:00
Welcome back, friends, to another episode of the Juice Box podcast.
Hey. This is Allie, and I am the mom of a type one.
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 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 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. This episode is sponsored by the Tandem MOBI system, which is powered by Tandem's newest algorithm, Control IQ plus technology. Tandem Mobi 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 podcast is also sponsored today by my favorite diabetes organization, Touched by Type One. Please take a moment to learn more about them at touchedbytype1.org on Facebook and Instagram, touchedbytype1.org. Check out their many programs, their annual conference, awareness campaign, their d box program, dancing for diabetes. They have a dance program for local kids, a golf night, and so much more.
Touchedbytype1.org. You're looking to help or you wanna see people helping people with type one, you want touched by type1.org. I'd like
to thank the Eversense three sixty five for sponsoring this episode of the
Juice Box podcast and remind you that if you want the only sensor that gets inserted once a year and not every fourteen days, you want the Eversense CGM. Eversensecgm.com/juicebox. One year, one CGM.
Hey. This is Allie, and I am the mom of a type one.
Excellent. And, Allie, we're gonna stay a little vague today. We're not gonna say if your type one is a girl or a boy. Is that right?
But we can say she's a girl.
We can.
Because otherwise, I won't know how to refer to her.
Oh, I wouldn't either. So I would have just talked around it forever. The way I do when where was I this weekend? I was at a touch by type one event in Atlanta. And Elizabeth, is the founder, and she runs the whole thing with a bunch of great people.
But I think she saw me not know someone's name, and she looked she looked me in the face. And she knew I was talking around the person's name, and I thought, oh, I got caught. I am am not good with names. I wish I could tell a story right now, but a person I know a person will hear it. I don't want them to be offended.
But, like, I it's possible I've known you for years, and when I look you in the face, I just think, oh, there's that person. I have all the memories of our relationship. Mhmm. But I don't know your goddamn name. And and if somebody asked me about you in this scenario, I could probably tell ten, eleven heartwarming stories that I'm really attached to.
Bad with names. I I don't know what that's about exactly.
But It's okay. We all have to have a flaw.
Oh, but you think that's my only flaw?
No. I'll listen to the show.
Yeah. Yeah. It's a punch list. I got a punch list somewhere of things that need to get fixed. But I said to my wife the other day, I was like, look.
I'm 54. I think it's too late. I've done pretty well, like, myself out of the shit storm I was born into. I think I think I'm good now. I'm just gonna enjoy the rest of it.
You know what I mean? Like, I don't think I'm gonna murder anybody or anything like that. I think this is good. I'm just gonna I'm just gonna ride this part out. And my wife says to me, I swear to god, it's an emotional moment we were having together.
It's none of your business, right, we tell you more about it. And and and, by the way, that's from a guy who three weeks ago told an hour long story about bleeding from his ass. So I just maybe it maybe I will tell you. But we were talking about parenting. And, you know, and I don't know how many of you listening have children who are older, but one day, in case you're not aware of this now, they will figure out everything that's wrong with you and then tell you about it until you die.
So
I can't wait. It's super fun.
And it leads to a lot of conversations where we say things like, well, they're a problem. Or why did we do this? Or do you remember when we had money and used to have sex all the time? Why did we stop doing that? Never anyway, point being is that I I made this declaration about, like, I've done enough.
You know what I mean? Like, I've come pretty far out of the muck. I'm proud of myself. And she goes, you should never stop working on yourself. She wasn't talking to me.
She tried to be colloquial about it. Like, people should and I was like, fine. And I just looked back at her, I said, you're not perfect either, you know. Then we went upon our merry way. Okay.
Now what do we wanna know about you? How many kids in total do you have?
Two Kids, and the Fluff6:01
I have two kids. My daughter is 17. My son is 14.
Okay. And you married, or did you get rid of that man that you let be with you to make those babies?
He is still around.
Look at you. What a pinch you are. You don't know that word. Right. I can tell by your accent, but not the point.
That's very nice to
My accent's already showing.
Already showing? I mean, word one, it's out. You know what I mean? Like, I'm on my way to Florida now to Blake's sitting in the front yard with you or wherever it is you live that's similar to that. So and don't tell me.
Let it be a surprise. So, how long have been married?
This is our twenty first year.
Oh, congratulations. That's lovely. Thanks. Never been in jail? No battery?
Nothing like that?
Not yet.
Pretty great. Not yet. There is a smart answer from a person who's been married for two decades. By the way, for those of you online who say the podcast is full of too much fluff, this is the part where I make Ali comfortable because she's never been recorded before. And then you get online and go, it's so full of fluff.
Hey. Can I just say something to these people, Ali? And I don't know you yet, so this is fuck you people. Okay? Like, you come make a podcast about type one.
How about you're welcome? Just say thank you. Okay? You motherfuckers. Sorry.
I'm I'm so
Well, now I'm loosened up.
It's like five people, Allie. But, like, I just you know, like, hey. What if you step back one day and said, I have type one diabetes or my kid does? And there's this guy that sits down every day of his natural life for twelve years and has a conversation with somebody attached to type one diabetes so I can listen to it. Maybe I won't get online and say, I don't like the fluff part of the podcast.
You don't like the fluff. Make your own goddamn podcast. Leave me alone. Meanwhile, this is my last part. This is my last thought on this.
Ali's not used to being interviewed. Like, I bring you voices who don't have a megaphone. They need a minute to calm down before we start. I don't know how you don't see you have mental health issues. If you're online telling me that my thing anyway, you're all lovely.
Love please don't please don't unsubscribe. Just keep listen just leave me alone. That's all I wanna say. I already have a wife and a daughter. I don't need the rest of you.
Okay? That that's what I'm getting at. Okay. So this kid, how old is it when it's diagnosed? It how old is she when she's diagnosed?
The Autoimmune Family Tree8:23
So she's she was 13, almost 14.
Okay.
Right before her birthday.
So just maybe three years ago then? Right. Not
long. Well, four. Yeah.
Okay. Is there any other autoimmune in your family? Do you have hypothyroidism? I'm gonna say yes because you have a deeper voice, but just go ahead and tell me the truth.
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Today's episode is sponsored by a long term CGM that's going to help you to stay on top of your glucose readings, the Eversense three sixty five. I'm talking, of course, about the world's first and only CGM that lasts for one year. One year, one CGM. Are you tired of those other CGMs? The ones that give you all those problems that you didn't expect?
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No. I so my family this is what my mom told her oncologist or the doctor that diagnosed her with ovarian cancer. She said, we are heart attack and stroke people. There's no way I can have cancer. All of my relatives just dropped dead.
Now my husband's family has some autoimmune. Oh. He has a first cousin that's a type one.
We found the person we can blame to alleviate our guilt. This is awesome.
Oh, it's definitely him.
Good for you. That's nice. Yeah. It probably really was lightning for you. Gotta call it wasn't me.
You by the way, your mom, we're heart attack and stroke people. I don't have cancer. Yeah. I'm gonna die of a heart attack. What are you even talking about?
Yeah. Yep.
She's she's still kicking with her ovarian cancer too.
Really? How old was she when she was diagnosed?
Let's see. She is 79 now, and this was probably six years ago.
Oh, wow. Can you hear the, type a people listening going, stop pivoting. Stick to the kid's diagnosis story. Again, make your own podcast. Okay?
I learned so much stuff from your podcast just from stuff that doesn't even have to do with what you're talking about. Yeah.
Well, those people who talk like that, they're boring, and they would make boring podcasts that nobody listened to. They just don't realize it about themselves. Go to therapy. Okay. Now so your daughter was diagnosed three years ago.
Your there is autoimmune on your husband's side. His would you say cousin has a type one?
Right.
Okay. Look at me remembering things. You his seriously, you have no idea how impressive that is. So his cousin has type one. There's other autoimmune stuff.
Does your husband have anything directly? A little celiac? Do you make the poopy after dinner or anything like that? What's going on there?
He definitely has something GI going on Mhmm. As does my son, but neither one have been diagnosed with anything.
What a lovely thing to pass down. So Right.
Yeah. He also has HS, the skin disorder. I know you've talked to other people about as hidradenitis suppurativa, which is not really considered all autoimmune, but it's auto inflammatory, and it's genetic, or it's hereditary.
Okay. Interesting.
Doctor Google Was Right12:56
So that was actually what my daughter, the year before she was diagnosed, started having those skin problems. And that's the
first Describe them for people. Okay.
So I took her to the dermatologist. She was having breakouts around her bikini line. Now she, you know, was 12 at that time. She had started shaving. The first two dermatologists I took her to told me it was just a rash from shaving Even though I had pictures of when they had erupted, and they were much worse.
Like, I have had razor burn before, and this was not razor burn.
I've been with a few ladies in my life. Razor burn looks very specific.
Right.
Yeah. Yeah. Yeah.
And I'm not if you can see my kids' medical charts at their pediatrician, we never go to the doctor. I like, it has to be something pretty bad for me even to make an appointment. Mhmm. So the fact that I brought her in, you know, I knew it wasn't razor burn. I figured out what it was.
My husband was never diagnosed. I don't know if it was a thing that was diagnosed when he was growing up. It's a thing that happens a lot with hormones, and you get it during puberty. And, he had kinda grown out of it. But I figured out what it was just from doctor Google and went into the third dermatologist and told her my suspicions, and she agreed.
So then she was diagnosed at that time with HS.
I just wanna be clear. She was diagnosed when you figured it out.
Right.
You just got you just got a doctor to agree with you. That that's all that happened.
Yes. Yeah.
Contextually, that's important, by the way. Yeah. Because you you very well might have gone in there and gone, what do you think this is? And the third one might have gone, oh, that looks like razor burn. And and, know Great.
Yeah. You sometimes you know how you say don't lead people if you want their opinion, or lead them if you don't want their opinion. You know what I mean?
Right.
People are pretty malleable. So, well, that's good good for you, first of all. That's that's way to get after it. And isn't life unfair? Like, you know what I mean?
You're, like, you're born a little bit. You're like, there's the baby. Look. The baby's gonna probably grow up to be a princess or, you know, a baseball player. And we'll probably watch you know, he'll move out.
Sure. But I'll get to turn the TV on every night at 07:00 and watch him play. And then instead, you shave at twelve and find out you have a skin issue. Awesome.
Yeah. Yeah. Yeah.
That was different than what I thought. So, man, that's bullshit too. Oh, I'm sorry. Okay. What do you do for that?
Is there anything to do for
So she has a very mild case. Thank goodness. Some people are put on the biologic injections that are immune suppressants
Mhmm.
Like Dupixent, you know, things that are also used for eczema that just suppress the immune response.
Just a bit. I wanna talk can I say, I'm sorry to take away from your time, which is funny after I've ranted and raved about 19 different things, but, I think this is what happened when you get me early in the morning? Oh. Yeah. I got a lot of energy right now.
It's not good for you.
You're well caffeinated. It's
good. Yeah. It's great for me. I haven't had anything yet this morning. Got up, took care of the dogs, took a little shower, came back to you.
I wanna talk to more people who are on those biologics to suppress immune stuff for other things. So if you're listening out there and you're taking something like that for anything at all, don't even care what it is. Like, reach out. I'd love to have more conversations about that. Sorry.
Okay. So it's you're managing that. It's going along fine. She's wanting to deal with it. That's all good?
Mhmm.
Okay. I did think it was a little bit strange because she's always been small. When you read about HS as a condition, you hear about overweight, hairy men mostly. And I kinda wrote it off because her dad has it, but that just still put some suspicion in my mind.
Hey. Just real quick. Is your husband an overweight, hairy man?
No. He's not either.
Oh, I think I wanna I
mean, he's pretty hairy, but he's not overweight.
Long time listeners know what I'm thinking right now. I would love to call this episode episode hairy man or something like that. I would also love to be able to say episode, but I was putting a lip balm on while I was trying to talk. Little trick of the trade there to keep the look the lip smacking from happening. Okay.
Alright. Well well, boy, that's something. Is that a thing that, like does it impact her life, do you think?
It did. She did have, a procedure on one of her places that kept erupting, but it was just like an outpatient. Not really a surgery, but they open it up, and it heals from the inside out.
Mhmm.
And since she had that done, it has been pretty good. So now when she feels something coming up, when it starts hurting, she'll start taking an antibiotic, and it usually goes away.
How how close are you with your daughter? Like, is it would she would she has she come to you and said, like, I'm getting older, be thinking of becoming intimate with people? Like like, is that a is that a roadblock for that?
I think it will be, but she is just now starting to show some interest in boys
Mhmm. Okay.
Which I feel like we've been pretty lucky with that. She's a senior.
It picks up quick, though, once it starts. Not really
Yes. I'm afraid of
with
her going to college next year.
Arden tells so many boys, no. Thank you. Not good enough. Blah blah blah. Now she found some handsome kitten.
Yeah. She she we were sitting around last night eating dinner, and then she's like, gotta go upstairs. She goes upstairs, comes back downstairs. It's, like, 10:00. She's like, I'm gonna go out.
And I'm like, okay. And I said, when do I expect you back? She goes, I'll be home by eleven tomorrow morning. And I went,
oh, okay. Oh.
And she's, 22. You know what I mean? So Yeah. But it's still you're it doesn't feel that way when you're looking at her. She looks like she's I in my mind, she's, like, 12.
You you know? Yeah. Yeah. Anyway, there's something for you to look forward to crying about.
Great. Later. I can't wait. I can't wait again.
Getting excited. Oh, the boy's already older. Is it different for your son, do you think? You're like He's 14. Oh, he's the 14 year old.
No.
Never mind. Yeah.
Okay. I think I might have been thinking of my son. Yeah. You're not you you're not ready to have that I can't ask you that question. About the, like is it really like, I know it seems wrong, and it probably is wrong to judge people differently.
But is it different, like, you know, sending your son out into the world or your daughter out into the world, that kind of thing? But, anyway, we'll we'll skip past that.
Oh, yeah. I don't know.
Yeah. You
I hadn't gotten there with him yet, I guess.
You won't be happy about that, though. Yeah. He's just at the part now where he hides in his room, he's slightly mean. Right?
He's not mean yet. He's still sweet.
Oh.
But she's she's been mean as a snake for quite some time. They're just different personalities. I actually I I said
to Ardold, and was like, why are you being so mean to me? I'm like he's like, I'm not. I'm just explaining it to you. I'm like, oh my god. Oh, no.
Sounds like Kelly's grandmother where she was just like, I'm not being mean. I'm just telling people how it is. I'm like, no. It's mean. Anyway, she's lovely most of the time.
She said she said something the other day. She go she looks at my wife, and she goes, like, real serious. She goes, do you ever have times where just every man you look at, you just kinda wanna punch him in the face? And they're having this thoughtful conversation, and I was like, I was trying not to, like, say anything. You know?
And she's like, I don't know, like and Kelly's like, yeah. And she's like, I don't know what that is. And Kelly asks, like, even your boyfriend? She goes, yeah. I just told him about it the other day.
She's like, I just don't know what's happening. And I just went, I mean, it's hormonal. She hit me. And I was like, hey. What the heck?
So anyway, it's hormonal, in case you're wondering. I've been around a I'm long like that what's that lady that watched the monkeys? You know who I mean? Going out in the woods with the monkeys, and she paid really close attention to them her whole life, and she I'm that.
Jane Goodall?
Jane Goodall. Yeah. I'm the Jane Goodall of women. I just wanna say. I've been
Just watch them.
I've been paying real close attention. And, anyway, I know you don't take the monkey's food from them, and I know you're not supposed to say it's hormonal when they ask questions like that. But there I was, and I'm getting older. I don't really care anymore. So, anyway, what is the lead up to the diabetes?
What do you see? What happens? How do you get to it?
The Big Water Bottle21:26
Oh, so she plays basketball, and she had just finished her eighth grade season of basketball. And she has this great big water bottle that she takes, to school when she has practice after school. And so since the season was over and she was just coming home after school, we had changed back to her normal sized water bottle. And after a few weeks after the season was over, she asked for her big water bottle again. So that was clue number one.
My son at that point was 11. He would sometimes get scared at night, he would go sleep in her floor in her room. And he told me that she had stepped on him when she got up to pee at night. And so that was clue number two. Mhmm.
About a month after that, we went on spring break, and we were all staying in a hotel room. And the bathroom was right outside of where I was sleeping. And she would get up maybe three times a night to pee.
Oh, okay.
So that's when I told my husband while we were on vacation that I thought she probably had diabetes. He flipped out. He's not medical at all. I guess I didn't say that I'm a pharmacist. And so he responded with anger.
I think he was afraid. Yeah. You know, there was a whole thing, but we when we got home, I went to Walmart and bought a glucometer and tested her, and she was three hundred something. And I called my friend who's a nurse practitioner and said she's a pediatric nurse practitioner and just asked, what hospital, and do I need to pack a bag? Because I knew what was coming.
Yeah. Jeez.
And Well So yeah.
That sucks. I wanna jump forward a little bit to the reason that you put in your note about coming on. And, of course Mhmm. So that I can say again, Emma, I I think I do know now. I'm gonna call the episode me as a snake, I think.
So Appropriate. Yeah. Yeah. Yeah. Also, you know, she'll never hear this, so it's fine.
True.
And it'll help other people, which is nice. Why don't you tell me a little all your note says is teenage rebellion and managing without technology. So, like, why don't you walk me through the the getting diagnosed and more of the mental, you know, side of how it impacted her and and how things move forward from there.
The Sensor Came Off at the Beach24:05
Okay. So that sounds like there was some big blow up, I guess, from what I wrote, but it's it's it was more like we eased into this. But so when she was diagnosed, I think we spent one night in the hospital. The educator came in the next morning and went over the basics, and then, there wasn't really a whole lot of education. I had a little bit from school, but that was a long time ago.
She went home with an Dexcom g six, NovoLog pens, and Levemir pens. And, Levemir was discontinued, so now we're doing Tresiba. Still doing NovoLog pens. The summer after she was diagnosed in April, we were at the beach. She asked me if she could take her sensor off while we were at the beach.
And without giving it much thought, because I know about finger sticks and how annoying that is, I thought, well, you know, this sure. You know, take a break. She'll be super annoyed with finger sticks. She'll go right back to her sensor. It never happened.
Did she not get months in. Did she not get annoyed with the finger sticks, or did she just not do them?
Three years later, we're still finger sticking. She's we go through probably 400 strips a month, I think, is what I get with our insurance. She probably tests 10 to 12 times a day.
Oh, cool. I mean, not you probably are mortified, but, like, I mean
I never thought for one second that, yes, I'm gonna let her do this, and she's gonna it's
It's gonna work out. You you you did that thing. You were like, oh, she'll see. And then the point will be made, and I won't have to even be the one to say it. Right?
Right. I should have known. Mhmm. I mean, she's been her own person since she was born. She's always been very independent, had her own thoughts about things.
She didn't care that that's the standard of care. She didn't care one bit. She liked the finger sticks and is still doing them.
Ten to Twelve Times a Day26:05
Is it working out? Like, it or her I mean. Never mind. I I took it from the I mean. Guess I don't think probably don't need the whole story.
It's not working out. Is that what you're
I mean, she's very responsible. She always doses. She, the worst a one c she's had since diagnosis was a 7.4. She's usually high fives to low sixes.
Okay. Well, she's doing well. But But you think she's
having more lows than I would like.
Yeah.
Because you can't you you just can't you know, we went from having the data every five minutes to having, what, 12 readings a day. I'd
Well, be serious about it for a second, though. Like, let's not joke around for a second. It is I get I get it. Right? Like, let's try to, like, thoughtfully look into the other side of it.
So you have the CGM. You always have context for what's happening. You can get ahead of things. Even if you don't get ahead of it, you can kinda track how bad it's going while you're fixing it. Right?
Like, there's a a level of comfort there at the very least. And she's probably having lower a one c's, you think, though, because she's low sometimes, and we're not doing anything about it. She's staying low too long?
She treats her lows, but, you know, you can catch the fall with a CGM, and that's you'd
Yeah.
You know, she doesn't catch it until she feels it sometimes.
Mhmm.
And, you know, so she ends up being in the, you know, sixties treating, sometimes fifties versus you know, we were treating in the seventies when she had the CGM. So you just don't see it coming.
When you had the conversations that I'm I'm assuming you've had with her before and they end with her yelling at you, what's the process, and what does she explain to you that she is it I don't care or I like it better this way? What's her perspective?
Two Friends Know27:56
It's just her personal preference. And she also doesn't like people to know that she's diabetic. So she has two friends that know. So it's not well known at school, and I think that has a lot to do with when she like, at what age she was diagnosed.
Mhmm.
You know, if she was diagnosed in elementary school, everybody would have had to have known.
And it would be too much she could have
end of middle school, you know, going into high school, it was kind of, you know, you have to consider their ugh. They have to be part of the decision making process even though they're they still have monkey brains.
You know? These kids, they think they know something, and then they talk. And if you ignore them, the state comes for you. It's tough. Yeah.
Yeah. Yeah. We do you is she in her, like, a side of diabetes life? Is she super private?
Yes. I would say so.
Is it vanity?
Maybe. Although, I think it's more she doesn't wanna be judged by that. She doesn't want any kind of sympathy or to be treated any differently. You know, when you're a teen, especially girls, it's all about conformity. Like, they all wanna dress alike, look alike.
I'm gonna
ask not like that.
Yeah. Yeah. Understand that. Know how to do it. Like, can I ask a question that some people are gonna judge me for, but I'm just I only have it?
Okay? Is she super pretty, or is she weird and awkward? What's the reason she doesn't want people seeing the stuff on her?
I think it's just insecurity.
Insecurity. Okay. And
And I I think that comes from so this is a little background about the elementary school we go to. About 10% of that school goes to a certain middle and high school, and the other 90% go to a different one. So we're in the 10% because of where we live. So after, you know, fifth grade, she had to make all new friends. Well, the first year of middle school, they go out for COVID.
So she had made, like, one or two good friends, and then it it was weird for a couple of years.
Yeah.
So she really has just a very small friend group, and she's not social. She's not very social.
Is she antisocial or
just the weirdo.
You're like you're like, listen. She's gonna shoot people in a ball. I was it that level? No. You didn't mean that.
You meant, like, she's just not, an out and about person.
Well, I mean, she's on the basketball team. She's on the golf team. She's an honor graduate. I mean, it makes her sound like she's, you know, a strange child, but she really is not that weird. But just very private and just doesn't want she's never wanted to draw attention to herself.
Mean as a snake, but not that weird. What a love letter. What a love letter. I'll let you say nice stuff about her at the end. Don't worry.
If she first of all, we know she's never gonna hear this. And secondly and by the way, for those of you who are like, yes, she will. I'm like, we we trust me. It's not gonna happen. We've taken steps.
And so but is she I mean, is she like like, how do you talk about her? Like, forget this whole diabetes story for a second. Like, if she didn't have diabetes, do you think this kind of stuff would be happening around other things in her life where she'd kinda be close to the vest, wouldn't let a bunch of people in, or do you think she's doing this just because of the type one?
I think it's a combination of the whole social COVID thing
Yeah.
And the HS and the diabetes.
It's like a stew that just leads you in this direction, really. What do you do about that or for oh, listen. I wanna say something. The other day, I was talking to somebody about some mental health stuff on the podcast, and I I just I have the same feeling every time I talk about not mental health, but human problems in general. Like, you either know they're happening or don't.
You kinda can diagnose them. They're hard to change. People don't wanna hear about, you know, where they're falling short or could be acting differently even. It's not a thing. I'm completely convinced at this point.
People change when they change, if they change. That's it. Like, you cannot force somebody to do something.
People Change When They Change32:20
Mhmm.
At all about anything ever. It's probably a waste of your goddamn time to even think about it. Like like so pointing out to like, you know, for a million years, you could point out to her, like, hey. You know, your life would probably be easier with a CGM.
Right.
She's not she's gonna say I don't care. Mhmm. You're gonna hear I don't care as she doesn't care about her health, which is not what she's saying. Right? And then it's just and then you're gonna feel nervous about it.
You're always gonna be on the edge. You're gonna have this feeling between the two of you where she's gonna know that she's you're disappointed in her for not doing a thing that she doesn't wanna do. And she's gonna judge you for treating her that way. And my point is, is if my wife and I just would not have had these kids, I think we'd have a second house. In a warm weather location.
You could be at
the beach right now.
Son of a bitch. But also, without them, I don't even know if I'd care. So you know what I mean? Like, this I think Mhmm. This is life.
And fighting against it is not valuable. I really Right. I'm not like a hippie dippie person, but, like, I think you just have to give people space. Let them be who they are, and let them know you love them. Mhmm.
Say your peace, and then back out slowly.
Right.
Right? And then maybe they figure it out one day.
Well, she's always been a very just deal with it kind of person. It is what it is. We're just gonna deal with it. And she, I mean, she completely manages. I haven't helped since probably the first year.
You know? And she always doses. She always checks. I can't really complain. I just I do, every once in a while, just put the bug in her ear that, you know, it's not really a one c.
It's time and range.
Wear It at Night for College34:14
Mhmm.
And we don't really have an accurate picture of your time and range because we have these pinpoint times throughout the day. We don't have the full data. You know, I just I want her at some point in the future to I'm actually trying to get her approved for the Eversense three sixty five right now because she told me she would do that and at least wear it at night so when she's at college.
Oh, that's that's a nice piece of progress. That's what I'm talking about, by the way. Marathon, not a sprint. You use whatever metaphor. Makes you comfortable.
Right. You you know, like, that's really fantastic. Hey. When you tell her all that, does she pause and go, dad's right. You're a pain in the ass?
Or, like
Every time.
Yeah. And then do you go, oh, I can't believe he says that about me buying my back, or do you go, no. This all checks
out. Yes. Definitely.
I like everyone's I guess Good.
A little bit, I guess, that I had some fear about her rebelling if I did make her wear the CGM.
Mhmm. I think you're smart.
Well, I could totally see her just turning me off and not letting me follow.
Oh, not only that. I listen. If you wanna get into my mindset, I have a daughter, and, and she's been on the podcast before. You've all heard her. So Yeah.
I my brain would say this. If I force her to do this thing, I jump right ahead to she's on heroin and she has three kids, and she lives on a just despite me. Do you know what I mean? Like, I I know that's not what but that's how far my I'm just like, oh, this is just gonna spin out of control. And that I actually believe about personal relationships.
You can Mhmm. You can live in a in a imperfect relationship that gets better, but you can't push a relationship outside of that cell. I actually am thinking about a human cell. Like, once you push it through that membrane, you're on the other side of it. You can't get back in again sometimes.
Right. Or it takes forever, and it's never the same again. So I'd rather this is obviously from the voice of a kid from a divorced family. But, like, I would rather everything not be perfect till we can find better than to push hard. No one's gonna bend anyway, and then everybody's at odds forever.
Right.
Yeah. I think you're doing the right thing.
Well, I don't know. We'll see. I'm also trying to get her approved for Afrezza, which I've I did all this stuff last year, but she was she's getting ready to turn 18
Mhmm.
In ten days. So they our insurance denied the Eversense and the Afrezza last year because she wasn't 18 yet. So I'm gonna go through all that again because I would I would like to for her to have those tools before she goes to college.
Yeah. I think that year. It's tough too because when you ask somebody to do something, if they're not ready to do it or they don't want to do it, but they know you're letting them down, you that they know or they feel like this decision is letting you down. Right? Now they feel bad for not wanting to do it.
They feel bad for not doing it, and then they feel bad for how it's making you feel. And then they probably feel bad for feeling bad and what it's done to your relationship. People are wired very strangely. You know what I mean? You would feel that way if if she was a friend of yours, but instead, you're her mom, so you're just worried about her health and her safety.
Right? You probably don't have any other thoughts except long term health, short term health. These are these are your concerns. Right?
Right.
Yeah. It's a weird mix. I don't know.
But I also want her to be good mentally, and I
You're not sure that she is?
Well, she is because she's not wearing the CGM. I think that it was very taxing for her to have all that data. I loved it. I'm the type a. Like, I had everything charted.
We would write down everything she ate and what happened, and she's just not like that. She just
She more like her big fat hairy dad? I know he's none of those things, but
yeah. Yes. Yes. They are a lot alike.
So his response to, I think, our daughter has type one diabetes is her response to, hey. You should wear a CGM?
Pretty much.
Awesome. Is your is your son just like like you?
He is. How does
all this happen? Isn't it weird?
I don't know. It's so weird. He's very laid back and very just easy to get along with.
Mhmm. I know you like him the best. That's fine. I understand.
They're so different. It's crazy. I know why came out that way.
Yeah. Yeah. Yeah. I got home the other day. I was gone for a few days.
I got home, and everyone was in like, it was the end of the weekend mood. You know, the Sunday afternoon, this wasn't a long enough break everybody kind of was feeling. You know what I mean? Mhmm. And I kinda stepped into it, but I had, like, a ton of excitement for my trip and, like, good energy.
And I was like, oh, I'm not fitting in in the space. And then and then I I tried to share something I was excited about, and I didn't I got a lot I got pushed back from from a lot of angles except for Kelly. Kelly was nice about it. But the kids were I'm talking about, like, changing something, and I think it's scaring the kids. Mhmm.
Right? And not scaring them, like, you know, like, they think that clown's gonna come out of the sewer kinda scared. But, like, it's just it's just uncomfortable for them. And so they're kinda they were pushing back with, like, their, like, oh, yeah. But what about?
And I was like, well, yeah. But what about this? Like, where we should just look or, you know, like, let's know better. And you realize, like, you're trying to, like, you're trying to make a point with fifty years of experience to somebody who maybe has five years of experience being adult, and they're not really adults. They're just like like I said to my wife the other night, I was like, do remember when we were Arden's age?
We were we were on our own. Like, we owned we had an apartment. We owned cars. You you know what mean? Like, we had jobs.
Like like, we were, like, we were we were hustling. Like, it was a different time. They're, like, finishing up school or talking about going to grad school or just starting out with work if they're lucky. You know? And their level but they still based on the age, they're like, I'm an adult.
Like, Arna said the other day Pat, I hope she never hears this. She had a she had a Dexcom, like, went funky. It got the gooseneck thing when you pop it in and the wire comes out of the top. Yeah. And so she had to pop it off and put on another one.
And I said, hey. Listen. You know, we can't afford to throw that away. You have to call in and and get that replaced because she told me six months ago that she's an adult. She can take care of herself.
So I said I put it on the counter, and I was like, hey. You just need to call Dexcom real quick. Tell them what happened, and they'll send you a new one. I mean, that was four weeks ago. And so, it's still sitting on the counter, but now I think it's a situation where I think she realizes it's been too long and I and I don't know why whether she's forgotten about it or she really believes I'll get to it, but she's also in college and she's got you know, she's young, she's got a boyfriend, all that stuff.
And, and all I can think is every time I walk past the box, I think, well, don't call it in because she's an adult and she wants to take care of it herself. But I'm also the one that paid for it, so I'd like very much if the replacement came soon. And so now I'm just weighing the amount of time I have to wait until she won't care. And again, my wife and I just used to, like, you know, have sex and, like, laugh and watch movies, and then we were like, we should have a kid. And now I'm staring at a Dexcom box wondering what the appropriate amount of time is to call this in.
Because let me just be clear, and I if she does hear this one day, she's never gonna fucking do that. Like, never, never, never, never. In a million years, this isn't gonna happen right now. I do I think she'd be an adult who would take care of it if it was five years now? I think in a in a millisecond.
But to your point earlier, she's in college. She's got friends. Those friends are like, their lives are changing. She's got a boyfriend. She's got her, you know, desires for herself and, you know, she's you know, what she wants and what she's doing, what she's not doing.
She's feeling like she probably feels like she lets herself down every day. She's out there hustling trying not for that to be the case. She probably feels like she's letting us down. I think it's so crazy how people always feel like that. Like, instead of just looking at the things that are going really well, you measure the things that aren't going well.
Don't do that. I only measure the stuff that's going.
The Box on the Counter40:12
Just freaking everything else.
Yeah. I'm like, hey. Listen. That wasn't perfect, but you just see what I did over here. So I mean, because I don't imagine I can be perfect.
So Mhmm. Like, why not like, anyway, you can't there's another thing you can't talk a person into doing. Right. You know? So Right.
Anyway. I'm anyway, so my life is spent, like, looking at that box going, like, what's the right amount of time to make this call? Ridiculous. I'm an adult. I have a bank account.
You know what I'm saying? Yeah. Yeah. You know why she has the bank account? Because I made her open up a bank account.
That's the only money that's in that bank account is from the one job she's had so far, which I can say now because it won't be out for a while, but was, like, making social media for Omnipod. Like, she doesn't even work. Like, I guess she's, you know, she and she's like, I'm an adult. I'm like, you're an adult. You'd be dead in twenty minutes without me.
What are you talking about? You're an adult.
Their own money, I don't think it changes until it's their their own money.
She's an adult like my wife wouldn't be broke if I wasn't here defending our cash. You know what I mean? My wife would be homeless without me. She'd be like, don't know where the money went. I'm like, I know where it went.
Shoes. It's in the closet. Go get it. Sell it to somebody. You'll get it back again.
But but seriously, also, let me I'm gonna say this because I think I'd like to lead this into your part of the conversation too. I'm being genuinely serious here. Beautiful, thoughtful, lovely, intelligent person. Fantastic. I love my daughter.
Is awesome. She is growing every day and becoming a more and more complete person every day. If if she heard me say anything like this, she'd think I don't understand her at all. But I would tell her she doesn't understand that she's in the middle of a process. She always thinks she's at the end of the process.
That's the thing about being young. Like, is you always think, oh my god. This is the best version of me ever. I know more stuff right now than I ever have. You don't realize you're just in the middle of it still.
Mhmm. You know? Mhmm. It's hard to hear.
I still did a lot of stupid things in my twenties.
Yeah. Of course. Are you kidding me? I had a baby twice. I was obviously an idiot.
I listen. I gave I've given you all the best advice in the world. I told you to pre bolus. Told you to get your base alright. I told you to understand the impact of fat on your blood sugars.
I told you not to get a dog. I told you not to get married, and I told you not to have kids. I have kids, dogs, and I've been married for thirty years. I'm an idiot too. If I knew what I oh my god.
I'd be by myself in the woods. I just want you to know, happy is a clam. What do think of that? Oh.
That'd be great.
How do they measure clams happiness, by the way? That's ridiculous. By the way Not
sure how we got here.
I gotta tell you something. For those of you who don't enjoy this part of me, I feel like I am flowing right now. Like, this is what I feel like my podcast should be like all the time. Oh my god. I'm like the Tim Dillon of diabetes.
And if nobody understands that reference, I'm like the Howard Stern of diabetes. And if you're too young for that one, don't know what to tell you. But I really feel like I'm doing great right now. And I don't use drugs. And I think that's impressive.
Oh my god. Alright. So what do you think?
Me a little bit of how we describe mental illness, as, like, diary of the mouth or, like, a word salad.
I don't know.
Sometimes.
I have, there's a flow is the best word I can give you. Also, was a comedian on here recently who I went off on kind of like a little bit of a what you some of you might call a rant, but I call it a a beautiful moment. And, and at at the end of it, I apologized to him. Was like, oh, I went on too long there. I'm sorry.
And he goes, no, man. He's like, you were, like, flow state there. He's like, I spend my professional life trying to find that spot. Oh. I was like, oh, I just need ten minutes to warm up, but I can hit it in two seconds.
You're on the roll.
And I also think that even if you being, like, super serious for a second, if you go back and listen to any of, like, the pro tip stuff or any of that stuff there Mhmm. I'm not good at diabetes till I hit this moment. Mhmm. And then it feels like I create this sort of, like, slip and slide from the things I know to the ability to, like, articulate them. Mhmm.
But if I try to speak thoughtfully and measured more like the rest of you do sometimes, I'm not really that thoughtful. It it's interesting. Like, I I need a little bit of unconscious when I'm talking, and then it, like, then it makes sense. Or those of you who don't believe in that, whatever. But, like, you know, you're like, no.
You're an idiot. That's why I listen to this. I listen because you're an idiot, and you make me feel good about my own mental health. Maybe that's what's happening for some people. I have no idea.
Oh, it's like those people that have to have a little bit of alcohol to drink before they they can be social.
That's not good for me. I wouldn't need that's not that wouldn't be good for me. Yeah. I'd say terrible. Like, I I mean, they wouldn't be terrible, but they would hurt your feelings if I was because I do this is actually me.
I'm I'm actually, like, restraining myself. I I tell people all the time, like, when I first started doing this, Kelly's like, people are not gonna like you. And I was like, no. I'll just hold some of it back. And and she's like, yeah.
You think you can do that? And I was like, no. And I think I've actually found a, like, a good level of it. I think so. I I think the podcast is entertaining, and it's helpful, and it's introspective, and and valuable.
But Yes. If I just opened up oh, thank you for that. That was a thoughtful yes. I'm sorry I spoke over it. If I just completely opened up, you would be like, oh my god.
Too much?
Well, imagine, like, no filter on me and going this fast.
Yeah.
Yeah. I'd it would take me about an hour to just, like I'd go through that. Yeah. I'd hit all the ones. I'd be like I'd talk about those people online who are, you know, acting like they're the reason that that Elodon trial's working.
I would talk by the way, the others nine people who I don't mean that about are now insulted. But here's the funny thing about me. I don't care. And you you know, like and and I'm not talking about them. Figure it out.
That's your own guilt, not me. Okay? And, you know, I'd I'd go off about I I would talk about so many things that would probably get me in trouble. But maybe at the end, I'll let you know when the last year of the podcast is. I'll may I'll, like, ring a bell.
I'll be like, listen. I've already secured all the advertising, and I'm not doing this again next year. Let's go. You you know what I mean?
Do You Run Out of Toilet Paper?49:15
This we talk about this at the pharmacy sometimes because there's just some customers you wish you could just say what you wanna say to them.
Mhmm. Well, what would you what would you say? How give me one example of somebody who is just like if you could just say what you wanted to say to them, you think it would be valuable for them if they would be forced to listen.
Well, just people who whose irresponsibility and or lack of taking ownership of their own care, and then it creates, like, an emergency for you. And, like, like, running completely out of things like insulin or, you know, their heart medicine, and then coming in on a weekend, they don't have refills on their bottle. You know, usually, we'll give them some. But if they come in being an asshole right off the get go, it doesn't really make me wanna, you know, just give you something.
Mhmm.
But I have asked people before, like, do you let yourself run completely out of toilet paper?
And what and what do they say?
They're like, no. And they look at me like I'm crazy. I'm like, this is what you need to live. Like, what?
You would you say to them, listen. Would you let yourself run out of toilet paper? Because the situation you've put us in right now is you have a shitty ass, and you're asking me to wipe it off. Exactly. Yeah.
I don't wanna do it.
Yeah. And guess what? Not for nothing. Ali's not into that. Okay?
So, go take care of yourself. You know what? I I have, an acquaintance who's been on a GLP for two years and can't lose weight. And and I say you know, I'm talking to him one day. I was like, yeah.
Yeah. Yeah. I'm like, look, man. I don't know. You're doing something wrong.
Like, you know what I mean? Like, like, let's try to, like, let's figure it out. I realized I'm talking to him. He's in a convenience store parking lot eating a lunch and talking about how his stomach hurts all the time. And I'm like, well, what are you eating?
And he starts going through the things he's eating. I said, you should stop eating those things. I was like, I think that might be part of your problem. You know, you you've taken a drug that's slowing down your digestion significantly, and then you're eating fatty foods. And then you're saying, I don't understand.
My stomach hurts. And then the the takeaway is the GLP makes my stomach hurt. I'm like, a word of. Not really. Like, you know now, again, some of you have probably had problems on the drug.
I'm not I'm not saying you didn't. I'm just saying that there's some situations where you're like, listen. You're you're double fisting cheeseburgers on a GLP and telling me that it makes your stomach hurt. The the the cheeseburgers that make your stomach hurt, not the GLP.
Right.
You you you know, like, so and or or the or the poor people who have some level of gastroparesis when they start, and then they have real trouble on it. They didn't know they had gastroparesis before, probably. And then they're like, you know, this this medication, it gave me gastroparesis. And I'm like, maybe, or maybe you almost maybe you were getting closer, and maybe it's tipped it a little bit. Like, I don't know, but we all run out into the world then and, you know, make the pronouncements about things.
Mhmm.
It's and it's tough to be do you ever think about this when you're looking at those people in the pharmacy? You want them to make a good decision, but nobody's ever told them what a good decision is. Mhmm. How are they gonna make it? Like, I mean, seriously, back to, like, GLPs and gastroparesis, someone probably should have said to them, hey.
Have you had diabetes for twenty years and had a one c's in the sevens? I don't think we maybe it might be a little scary to put you on the struggle. Why don't we check your motility first to make sure that this isn't gonna slow it way down? Like, there's think people led them wrong in that situation. Right.
Anyway, like, I'm gonna take a hard pivot for a second because you're in pharmacy. I think GLP medications are gonna, like, fundamentally change the world. I I think that in your my lifetime, like, that idea of, like, you know, you you go to Disney World and everybody's overweight. Like, I don't I think that's gonna go the other direction. Do you think that or what are you seeing with people like in real in the real world?
Because I get worried sometimes that I judge what's happening based on my experience, which is all I can really do. But I'm my I'm having a fairly thoughtful use case with the stuff. So what do you see, like, in the real world use?
I'm not seeing a whole lot of people who don't go to the pharmacy anyway. Like, if there are people who don't go to the doctor, don't take care of their health, I don't think they're gonna be exposed to it anyway. These are people who or most most of the people that we dispense to, you know, are diabetic patients anyway, or they have other health issues going on that they were already our patients. We don't have many new people coming in that are just getting GLPs. I guess that's what I mean.
The way I'm doing it. Like so I I I wasn't having a ton of other issues that were, like, really detrimental, and I was like, I'm gonna lose weight.
And Right.
Then I so I oddly enough, I'm using it more proactively than most people.
Right.
Yeah. But we'll put it
in the water. It's not even on some people's radars.
Oh, no. That's for sure. Like, a 100 I'm I'm sometimes stunned by the things that exist in the world that people don't know about. I'll give you three of them right now. GLPs, most people no idea what you're talking about.
Mhmm.
Self driving cars, which work much better than you all probably think they do, and AI. Like, the weight like, I go to juiceboxpodcast.com right now and look at how great that website looks like. And then say to yourself, that Scott guy did that in two weeks, and he doesn't know how to code a website. Like like, seriously. No no joke.
Like, go look. It's people say, wanna be able to listen on the website. I don't wanna go to like, you know, I don't there's a thing I I think I'm I think I drag a lot of people who otherwise would never listen to a podcast into being podcast listeners. Mhmm. So you kinda have to give them more options about how to listen because, like, where I would just, like, open Spotify or Apple Podcasts and listen, they don't know about that.
So they wanna be able to listen online better. But that's not what the podcast industry wants, so the online players kinda suck. And so I just coded my own online players. But I don't know how to code. And the I mean, that's the thing that AI does that's really astonishing.
My son works in an industry where he's overseen by a project manager. And he came downstairs yesterday and he goes, you know how this project would go better? And I said, how? And he goes, if the project manager would leave us alone. And and and and I was like he starts talking about, like, you know, Skye is just trying to make work for himself.
We don't need him. Like, he thinks he's everything's about him. He's making a thousand meetings that nobody needs, blah blah blah. We need to keep track of what we're changing, keep track of our deadlines, blah blah. And I watched over his face.
He goes, I could just build an AI agent to do that. And I was like, okay. And in ten minutes, he was explaining to me how he's gonna build an AI agent to do the project management stuff. And then once it's working right, he's gonna take it to his boss and go, hey. I figured out how we can save a $100 and make our lives better.
Let's get rid
And of like, so and you could argue, well, that's terrible. John's gonna lose his job. Or you could argue if John was better at his job, no one would ever have that thought. And, you know, and like, I've heard people say about all these things. Right?
Mhmm. Always fear the GLPO, it's bad or you're Mhmm. You you know, you're cheating. Well, when I'm alive longer, I'm not gonna think of that as cheating, by the way. I'm gonna think of that as winning.
You know? The the AI stuff, I've heard it said that the closest thing I can come to believing now a year and a half ago, I would have told you. I was telling to people a year and a half ago, there's gonna be college courses just about how to prompt AI. Mhmm. And now and and I thought that the people who knew how to do it were gonna succeed.
And I've kinda melded that into an idea of now, like, it feels more to me like people who people who work with AI will keep their jobs, and people who don't know how to work with it are gonna have trouble in certain industries. Like, know what I mean? Like, not not everywhere. Self driving cars, I'm just gonna tell you, like, they work perfectly. Mhmm.
Is it perfect perfect? It's not, but it drives way better than you do. So you can think that's not true, but you were wrong. So it it it's it's fascinating how well that stuff works. Anyway, my point is that those are, like, pretty big leaps in technology and understanding of the world that most people are completely unaware of.
Yeah. It's pretty interesting. So when you get into medicine or, you know, like, you know, what was the other day they were yelling about, like, there's peptides are gonna be easier to compound now or something. And then I heard somebody say that's not true. But I was like, whatever.
Like, let's say it becomes more true. It doesn't matter. It's not like your doctor's gonna be like, oh, you know, here's this peptide that helps you heal more quickly. That's no one's ever gonna prescribe that to you. Like, it's just you you know what I mean?
Yeah. Yeah.
Anyway, I'm sorry. Say all the things you wanna say now.
Dragged In by True Crime58:28
Well, I have to tell you how I found the podcast, I guess, because I am of a certain age, and I didn't listen to podcasts before. Do you know who Alec Murtaugh is?
Wait.
It's this lawyer in Charleston that, like, killed his family.
I know that name. Yeah. Yeah. Yeah.
Yes. Okay. So that one of my friends was listening to a podcast about that whole thing, and she was like, you gotta listen to this. It's great. So that was the first ever podcast I listened to.
So that got me onto and then I figured out I could, you know, search for things I wanted other things I wanted to listen to. Mhmm. So when she got diagnosed, I came you know, yours You knew about this? To pop up.
Oh, wow. Well, thank god he killed all those people.
I know. Right? Thanks, Alec. I don't know I don't know if he's still alive or if he's in jail or what. But So you It was terrible story.
I
like the way you laughed through it. No. It's but, man, what a good point. Like, you were never gonna find podcasts. Something drug you into it because it was the only delivery system for that story.
Also, I mean, this is an over said statement, but I do not know why women like True Crime Podcasts so much. It's very like, that's a truth about the world. They're incredibly popular.
Mhmm.
Like, health podcasts, true crime podcasts, politics, those should be, like, the most, like, widely popular kinds of of podcasts. Mhmm. But yeah. Do any idea why? Have you ever dreamt of killing somebody?
Does it fulfill a fantasy? What's going on there? Do you like being scared without being in danger?
I think if you see, like, a really messed up family, it makes you feel better about yours maybe.
So this is just about cattiness, you
think? Probably.
I knew there were people out there that were worse off than I was. Thank god.
I'm just here to make you feel better about yourself.
Oh, that's a t shirt for sure. If it's not, patent pending. Please don't steal that. I had the oh my god. I a couple of years ago, a professor at Penn State Mhmm.
Was arrested for having relations with a dog. I don't know another way to say that nicely. Oh. And I was like, god. That must be the talk of the campus.
And then I said to the kids, I was like, could we make a t shirt about that and then just sell it in Penn around Penn State? I think we might be wealthy. I think every kid on camp there's so many kids at that school. What if we sold one to each one of them? I think we'd be done.
We could retire. You know? And my kids are I I don't I wasn't I wanna be clear. I wasn't serious. I was joking around, but they're like, please don't do that.
But but I'm only here to make you feel better. That's gotta be it. I mean, if that's not a t shirt already, the t shirt gods are are not paying attention. That's Right. Because that's how we all feel, by the way.
Yeah.
Yeah. Like, I'm just here messing everything up. You know, at least I'm a I'm a good role model for you to feel like you're doing a little better job than me. I I think there's a lot of value in that. But then you find the podcast and Yeah.
Why do you find it though? Because you said she's been taking care of it on her own pretty much the whole time. So where's the value for you? Because I don't imagine she's listening to you. You don't get to go like, oh, go listen to episode this.
Right? Right. You
Well, I'm I'm just the kind of person who wants to know everything about a thing, and I had limited knowledge. And I those first probably three months were rough. She was
Nice.
So when she got diagnosed, she was in the hospital, I think, on a Tuesday or Wednesday. We got out the next day. She had a basketball tournament that weekend, and I was like, what? We're doing it. We're now this is not gonna limit us.
We're we're doing it. Mhmm. Well, she played the first game, and I expected her to tank. So we had given her some snacks before, and she was, like, 400 after her game.
Yeah.
And so then I did some research on to the, like, adrenaline and how it can make you go up during exercise versus down versus, you know, different kinds of exercise, and there's you know, it's just so much information. And then the hormones, and, I just wanted to get all the information I could so that I could you know? And I do share it with her in little pieces, and I have sent her some of the small sips.
Mhmm.
I don't I don't know if she's listened to them or not.
Tell you I listened to them recently? Yeah. I had to give a talk, and it was a I had this is only for people who are online too much, but I had to drive out to Long Island to give a talk at Hofstra at a teaching hospital. It's a three hour ride one way. I drove six hours to talk for an hour and ten minutes.
I did not charge them to do that. Wow. So those of you out there who say you're helping people, but it's all about, like, I wonder if I could get money out of everybody. Mhmm. You know, maybe just do a nice thing once in a while.
Anyway, that's not for me. That's to tell you that I was in the car first three hours on the way to the thing. And I'm a pretty good public speaker. Mhmm. So but I don't prepare.
So I do the flow state thing. Usually works out pretty well. I just modulate it differently because, you know, it's not for fun. It's not a podcast. And but I I knew I was going out to to give like a very specific conversation.
And I actually thought to myself, I wish I could just brush up really quickly on what I think. I know that sounds odd, but, you know, stuff I said a while ago and, you know, it lives online where people are like, my god. This is really valuable to me. I don't remember exactly how I said those things. So I just list I just put those small sips on.
I just let them run-in the car. And, you know, they're only sometimes ten minutes long or something like that. And I got done, and I don't mean I'm not trying to be funny or self deprecating or any I just I got done and I thought, these are really good. Mhmm. Like, these will really help you.
You you know? And they're quick. And they put you in a in a tiny little knowledge bubble that you need, makes it understandable, and you can get the hell out of it really quickly. And, you know, I made that for younger people, but never thinking to myself, like, they'll probably never even listen to it. So but they're there if you want them.
Yeah. Yeah. Well, I've sent her some of them. I listened to all the beginner stuff. I'd started at the beginning.
Mhmm. And then I would skip ahead and search for certain things I was looking for.
Sure.
R Insulin and What Actually Matters1:05:15
But I I learned so much just from listening to other people talk about just different I remember I was listening to a podcast one time, and you had Jenny on. And y'all were talking about a mountain climber, and she was talking about our insulin. And I ended up getting some from the pharmacy, and my daughter eats a very low carb lunch. Mhmm. So we give her r when she leaves her school, and it covers her throughout the day.
Okay.
So that's working pretty well too.
Nice.
But just different things that I've picked up, and everybody's so different at the way they manage. I do hear a lot of people talking about pumps and technology, and I have listened to a lot of those podcasts as well just hoping in sometime in the future that she may, you know, be ready for that.
Yeah. Just got a text while you and I were talking from the person who just helps me with Arden's, Trio algorithm. And the text just says let's see. Trio is in Main now. Should we move Arden up?
I said, do you think I should? And they said, yes. And I said, cool. Let's do it. So yeah.
I'm I'm hopeful for, I mean, honestly, I think if we could get to unannounced meals on an algorithm, it'd be a really big deal for people. Mhmm. Yeah. You just eat and that thing could figure it out and get ahead of that. I think that changes people's lives.
I've you know, just in the last week, I've spoken to a group of adults, a group of parents, a second group of parents, and a bunch of little kids all about diabetes in, like, in a short span of time. And it's it's valuable to hear their their feedback and what they're going through and everything. And whether these kids, I'm not kidding, are seven or 70, and you say to them pre ballsing, they all say the same exact thing. Like, that's difficult to remember to do.
Mhmm.
And Yeah. And one I think it was a kid today. It was. It was like a like a an 11 year old girl she said to me, I don't know I'm hungry till I'm hungry. Mhmm.
And it was just the simplicity of the way she said it. Like, I don't plan to eat in twenty minutes. I'm not hungry now. I'm hungry twenty minutes from now. And, you know, I don't know.
There's just the way she said it to me, was like, yeah. She's she's right. Again, not that I don't know that pre bolting is difficult or that it's not an extra thing for you to remember. I just I'm more in the camp of you're putting so much effort into this. If we could put in less effort in different places
Mhmm.
And it is it a is it a it a switch up in how you think about it? It is. But it I think you'll find it valuable if you can get into that kind of flow state with it. Whereas, like, you know, I pre bolus my meals. I don't let a blood sugar get over, like, one sixty without, like, bolus ing again, if that's happening.
Right? If it's going up and not stopping, I don't stare at it. And, you know, I mean, I understand the impact of my food, and you're you're kinda done. Like, it's not
that Right.
There's not that much to it. It's I said to somebody the other day, I used to worry all the time that, you know, like, I would lose the podcast somehow or somebody would come along and say it better or differently or make it more entertaining or something like that. I said, stopped thinking about it. Like, I don't I don't think about it anymore. Like, seen, I lost count at around a 110 or a 120 other people who tried to start a type one diabetes podcast in the last twelve years after I did
it. Mhmm.
And it's hard. It's hard to say the same simple things in different ways. Like, you get I think you can get lost in thinking there's, like, a bigger idea and more to say. There's not. It's it's it's managing your insulin timing and amount.
It's understanding the impact of your food. That's really it. Right. You know, after that, there's mental health stuff and all this, you know, interpersonal stuff that, you know, you you and I talked about today and you've heard in other episodes. It's all important.
And, you know, there's it's it's all worth paying attention to. But if you're just talking about the nuts and the bolts of it, it's just putting the right amount of insulin at the right time.
Right.
You know? And so Right. When you start doing those things wrong right? And I don't mean wrong like you screwed up. I mean, purposely, I don't pre bolus my meals.
Okay? Mhmm. I'm now there's a ton of psychological reasons why that might not have happened. I don't minimize any of them. But I'm saying once that happens
It happens.
This twenty four hour period, it's a shit show. You're chasing the insulin. You're chasing the the number. It's a it's an entire day of this exhaustive chase of this thing that you just didn't have to let out of the box. And, you know, and and it's not that easy.
And obviously, I I mean, if you heard me talk for the last hour, I know it's not that easy, but it is true. Mhmm. And so how do you get yourself to that point? And I will tell you that, you know, our daughters are not exactly the same age, and they've had diabetes for vastly different amounts of time. But I still hear the same story in your daughter that I hear in other people I talk to and I experience with my own kid, which is you can do all this stuff you wanna do.
The way it ends up going is out of your hands. It's gonna have a lot to do with their desire, their focus, their level of interest and understanding, and all of the outside variables that they come to in their life. Girlfriends, boyfriends, jobs, stress. Like, these are all things that re they reshape people constantly. Right?
Right. And we only have so much perspective, and we only have so much time, and we only have so much energy. So you can be a perfect parent. You can understand all of this. You can pass it on, and it might go great.
It might not go great. It might go somewhere in the middle. But I'm gonna tell you that nobody wakes up on the first day that their new baby's home from the hospital and says, I'm gonna raise that Montauk guy. But somebody does. And you know what I mean?
And so, like, your kid's either gonna be out there, like, slaying diabetes or diabetes is gonna be slaying them or somewhere in that middle. Don't know that you can do more than lay out a path, be supportive, be understanding, and then step back and say, if you need me, I'm right here.
Right.
And then just take whatever it is that's gonna happen, you just gotta be willing to just accept that really wasn't within your control to begin with. Right?
Right. Right. I told her I wanted her to make all the mistakes while she was living at home so that she would know how to how to deal with them.
Yeah. Well, that's parenting, is putting kids through experiences so that hopefully when they happen to them when you're not there, they don't freeze up. Right. Or ignore them.
She doesn't drink now or, you know, I guess my parents probably thought that too. But, no, I think kids these days don't drink as much as what went on when I was a kid, but, I've talked to her about it anyway, you know, like, all the things that can happen and how it's harder to treat lows. And I just want her to have all the information. Mhmm. And she can, you know, use it however she needs to.
But
It's all you can do. That's life, by way. It's not diabetes. Like, if you think Right. I I I think I say it enough here, but I I found myself saying it this weekend.
Somebody came up to me after the talk, like, oh my god. That was so thoughtful and blah blah blah. It's just how I think about life. Like, it's just common sense layered over top of diabetes. And Mhmm.
Like, the I the truth of it is you can take the talk I just gave, take out the word diabetes, put in a different word word. I don't know what that word would be, and it would probably apply to that stuff too. Mhmm. It's not magical. You you know what I mean?
Right. I'm just I'm laughing, thinking your parents sitting around going, oh, Ali, she doesn't drink. She probably doesn't have sex. She's, like, she's fantastic. And you're out there just drunk, banging in the back seat of a car.
And and they're just like, she's so lovely. She's really great. She's our princess. Princess? Yeah.
Something like that.
Something like that. Well, yeah. Well, you know, like, it sucks. And it's interesting, and it's fun. And if you changed it, it would be boring.
So
Well and I don't think I would have done half the things I did if everybody had a video camera in their pocket like they do these days. You know?
Yeah. I mean, right?
That would have changed everything.
They don't know about our lives. They really don't. They they
I'm glad I grew up when I did.
Actually, I like, we're in a we're probably about the same age. Right? So I like the spot we're in. I like having grown up without it, but experienced it humming. And being like, I you know, I'm probably not the person you would think would be at home being like, I think I can make AI work for me.
You you you know, but I I but I had a computer when I was younger. It didn't do anything. It's trite to say it out loud now, but you guys have no idea. Like Mhmm. If you're walking around with a cell phone right now, you know, I've said it before, but there's more computing power in your iPhone than what they used to, like like, send that that lunar orbit to the moon.
Like like, there's you know, back in the sixties, if you believe they did it. I mean, the Internet. You know what I mean? But, like, but it it's just it's fascinating. They're talking about they're talking about this AI making another leap sometime this year by the beginning of next year.
And it's all to do with, like, the chip speed that's processing the work behind the scenes. And once they get these chips moved up one more time, then, you know, I guess, then they get the AIG. I'm a little out of my depth here, but, like, you know, the the I mean, what's his name? Anthropic just released a model of Claude internally that have you heard about this? They so, you know, they No.
They have a new new model of Claude. I think it's called Mythos. And they they test it the way they test it. Right? And one of the way they test it is, like, against security and protocol and stuff like that to see if it can find flaws in existing systems.
And they went into systems where they have like, we all think they run perfectly. Right? They we think they're secure. We think they're fine, etcetera, and so on. Like, nothing that we've had up until then, including the the version of Claude right before that could find any problems.
This mythos walked in and was like, oh my god, and found every problem with it in a split second. Oh, I know. To the point where they said, we can't release this to the public. Because for you, you seem like a nice person. You might think, oh, that's great.
Well, well, like, I'll go to my bank with Mythos, and I'll find all the security flaws and fix them. Mhmm. Someone else is thinking they're gonna go to your bank with it and take your money. You you you know, or or blah blah blah. So they're so they were like, we I don't we don't even think we can release this.
We're at that point already. And, you know, like and so they'll cripple it a little bit probably before they put it out. But then they shared it with a bunch of companies, which by the way, thought was because they wanted the companies to be they say they wanted the companies to be able to, like, fix their problems before this kinda gets out into the world. But the point is is that eventually, this is gonna get out in the world. You you know?
And I don't I don't know that anybody's even paying attention to this stuff. Like like, seriously, like, you hear I don't know. AI's scary. It's bad. Or it uses up a lot of electric or water.
And maybe you're that person where you're like, you know, well, it's it's ruining the environment. You know? Mhmm. Trust me, everything's ruining the environment. But like, you know or maybe you're like me who's like, I think I can find better ways for people to help themselves with their diabetes with it.
Like, I'm gonna Mhmm. Gonna try to use it for like a good thing. Meanwhile, like, I don't know, like, things are moving really, really quickly. But you and I have context for it. People who are alive right now, like, in the last twenty years, they just think this is how it works.
Right.
It's a magical world where the electric thing does the stuff. And Mhmm. Like, know, you and I made, a grilled cheese sandwich and walked outside with it. And we're like, I wonder what I'll stare at now.
Went to look up things in an encyclopedia.
The worst. Absolutely the worst. And you're reading about it, and you're like, even back then as a kid, I was like, when was this written? Like, I don't know. Everything I knew up into that's why I'm like like that's why I'm still really hopeful about the podcast being like, you know, it's easy to say, like, he's been doing this for twelve years.
I actually, I'm one of the people who says that, like, how much longer can this possibly last? But at the same time, I honestly think it's in its infancy still. Because we're about to find a whole new generation of people who don't have to go find a podcast through a true crime podcast to help themselves with their diabetes. Their expectation is that this exists somewhere. Mhmm.
And they're gonna go get it. The same way when I wake up in the morning and I don't know how to do something, I think I will understand how to do this by this afternoon.
Mhmm.
I I get excited about that.
I'm always amazing.
Yeah. I'm pissed about being old because I think the next fifty years, again, if we don't kill ourselves or the robots don't come or whatever.
I mean, you've seen Terminator.
I've seen Terminator. I've seen the news. Like, you know, like, if we don't figure out a way to blow ourselves up, I think it's gonna be really amazing, and I'm gonna be pissed to be dead. Seriously. I mean it.
Like, the last thing I think before I go out, I'll be like, I'm gonna miss a bunch of stuff. That's how that's how I'm gonna feel. People who died fifty years ago were just like, okay. It's fine. I can go now.
Right. They had no idea what was coming.
I'm out of stuff. I did the thing. Right? I painted the house three times. How many times am I gonna paint the house?
I'm good. So, nevertheless, any anyway, good luck to everybody. I don't know what to tell you. The guy that barely got out of high school making a podcast. So you probably shouldn't be listening to me.
What have we missed? Anything? Do you wanna say anything? You got follow ups ending? You wanna leave a message to the world?
No. I just really appreciate, you know, hearing everyone's voices, and I wanted to add in my 2¢ because we're you know, we manage a little differently. And because I've learned so much from hearing other people's stories, I just wanted to, you know, be on and and contribute.
Did you feel like you got to do that, or did you catch me on too much of an energy day, you're like, well, I probably should be invited back to do what I wanted to do.
I'll come back if she ever goes back on a CGM
or if
she gets some technology or something because I'll be I don't know. I'll be shocked.
I gotta tell you. I wish there was a way to, like, invite her on here. I'd love to hear her opinion. I know that's not happening. Don't get me wrong.
But hers is the kind of opinion I'd like to hear. Right. I'd like you you know what I mean? I'd like to hear her say, look. I don't I just don't care.
Like or, like, I'm doing this is good enough. Good enough is good enough or whatever. Like or I don't know how she feels. She might Yeah. You she might surprise you.
She might you know, if she was able to unburden herself, she might say, you know, I can't handle it. You know, I wanna do that stuff, but I just I can't. Like, it's too much for me. Like, who knows what her answer would be? You know?
Right. But that's why this is interesting because all this is is your perspective of her situation.
Mhmm. Right.
You know? And mine? Right. I don't know you or her.
Mhmm. Right.
I'm just generalizing. Yeah. Having said that, generalizing, you know, works pretty well. So everybody's not like, I'm a I'm a flower. No.
You're not. Stop it. Alright. Hold on one second for me. I'd like to thank the Eversense three sixty five for sponsoring this episode of the
Juice Box podcast and remind you that if you want the only sensor that gets inserted once a year and not every fourteen days, you want the Eversense CGM. Eversensecgm.com/juicebox. One year, one c g m. This episode was sponsored by Touched by Type One. I want you to go find them on Facebook, Instagram, and give them a follow, and then head to touchedbytype1org where you're gonna learn all about their programs and resources for people with type one diabetes.
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. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app.
We'll be back tomorrow with another episode of the Houston Fox five.
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