#1980 Three Years Low Carb
Three Years Low Carb
Diliara's daughter was diagnosed at eight. The family went low carb for three years and it worked — until it didn't. She and Scott talk honestly about what that community gets right and where it goes wrong.
Jump to a moment
- Rhythmic gymnastics hid the symptoms. Leila was diagnosed at eight. The girls were at practice all day in the heat, so constant drinking and weight loss read as sport. Diliara remembers running a bath the night it clicked. The hospital told her another couple of days would likely have meant DKA.
- She filled the gaps herself, immediately. Discharged with the big follow-up appointment six weeks out, she went to school with her daughter for three months because she was afraid to leave her alone, bought a CGM out of pocket rather than wait for insurance, and asked her doctor only for a letter of medical necessity. She credits contacts at a diabetes center for explaining what the hospital hadn't.
- Low carb worked, and she says so plainly. Three years of it produced stable blood sugars and a more peaceful house, and she still believes it's a reasonable way to eat. Her critique is about the culture around it rather than the food — feeling judged reading posts about other people's A1cs, and a tone she describes as iron fist, do it or get out.
- Scott's counter-argument, and her agreement. His position is that people who were drowning and found one thing that saved them become evangelists for it, and that the evangelism costs the movement people who would otherwise stay. Her point back is the one he concedes: there's a mental health cost to focusing only on numbers, and she was feeling it.
- The turning point was her daughter's health, not a change of mind. Diliara describes her daughter developing an eating disorder in a sport environment where teammates were routinely body-shamed. She's careful to say low carb didn't cause it but didn't help once her daughter was struggling, and that a friend who knew the field is the reason she caught it. That is what moved the family away from restrictive eating. Support resources are below.
- National Alliance for Eating Disorders — Free support, a clinician-staffed helpline, and treatment referrals for anyone affected by an eating disorder.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Mental wellness series with Erika Forsyth — The emotional side of type 1, including food and diabetes distress.
- Juicebox Podcast Facebook group — The private community discussed in this episode.
Every word of the conversation
Cold open & sponsors0:02
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My name is Delara, and I'm a mom of two teenage girls. My younger daughter, Leila, was diagnosed with type one diabetes about five years ago when she was eight. And I've spent the last five years just learning everything about diabetes I could possibly learn and trying many different things, many different approaches as Leila has grown, as our family has changed. Wow. And I'm here to share it.
Leila, diagnosed at eight2:06
Thank you. I appreciate you taking the time. Like the Eric Clapton song or you got it somewhere else?
Oh my gosh. I get that all the time. And the other day, she actually asked me. She's like, what is this Eric Clapton song that everybody talks about? Because I didn't know the song once I came up with the name.
So... But everybody thinks it's because of the song.
Does she like this... Did you have to show her the song?
Yeah. Yeah. I I shared the song. So she liked it. She liked it.
She's like, oh, okay.
That's why people keep... So I only said it because my son's teaching himself the guitar. And recently, I've been hearing Layla in the house. So... Yeah.
Yeah.
Yeah. Well, I'm Russian. My origin is Russian. So I really tried to come up with names that were pretty universal, that were easy, that my family in Russia had no hard no hard time pronouncing.
Okay. So... Oh, I heard it there? I... No hard time.
I... There... That...
The accent?
Well, not just the accent, but the phrasing. Ah.
Yeah. I... Yeah. I get a little... Like, when I
get a little nervous, my accent definitely comes out more.
Okay. Yeah. I know you... I was gonna say you sound like you're trying to sell me perfume on the street all of sudden. Oh, that's a reference everyone who doesn't live here would get.
So, actually, when this, when this when we're done at the end, I'm actually gonna ask you to pronounce your last name for me because I can't wrap my head around it.
Oh, sure. It's actually a lot easier than my first name.
No kidding. Okay. Alright. We'll we'll do that later because that's your own private business. So five years ago, she's diagnosed.
Mhmm. You told me prior to being recorded that you're divorced. Correct. Were you married at the time?
Yes. Yes. I was married for fifteen years. And, yeah, we were married at the time.
Okay. So how does it come on? What do you notice? Is it a thing you were expecting?
Definitely not expecting. Both of my girls are gym... They were gymnasts at the time. So, they were training at a very high level, like, every day for five five hours every day. It was summertime.
They were pretty much at gymnastics practice all day every day, and it was hot. So, you know, the typical symptoms, drinking lots of water, losing weight, it wasn't... Like, we didn't think anything of it other than just, oh, it's gymnastics related. But, yeah, other than typical sentence, losing weight. And I think at some point, people at gymnastics, like like, her coaches started commenting Mhmm.
Gymnasts, and symptoms that hid in plain sight4:45
On her weight that she was so thin. And I remember the night she came home that day, after complaining that she was really tired, really thirsty, I remember, like, making a bath for her and running water in the bathtub, and then she gets undressed. And I look at her, and I was in shock. Like, her bones were sticking out. Like, her, like, ribs were sticking out.
It was... I just knew something was wrong that night. So I made a appointment to go see a pediatrician the next morning, but that night, I sat down at my computer and started researching it. And I just... You know, I had this gut feeling that, you know, she might be diabetic.
I haven't mentioned it earlier, but I am in health care. So I'm in... I've been in health care for over twenty years. And I'm a software analyst, so I've worked for many hospitals in my career. And I've actually worked with Barbara Davis Diabetes Center when I lived in Colorado.
So You had enough
background that that it kinda led you to that? Is that what happened?
The what?
Did you have enough background with diabetes? Had heard enough things that it made sense that that's how it
got to you? Okay. Yeah. Yeah. But I didn't...
The only thing that was missing from that, I still thought that it had to be somehow genetic. I didn't realize, and we have no history of it in the family. So I was still, like, in disbelief. Mhmm. But, anyways, the next day, we go to the pediatrician's office.
They test her blood, and it was, like, 40. So they called the ER, and we packed our bags, went home, packed our bags, and got admitted to the hospital. So we, I guess, caught it early. But at the hospital, they did say that, you know, in a couple more days, she would've probably been in DKA. Yeah.
Well, thank god somebody said something and you looked in... Hey. Not that I'm saying she should have, but I'm interested. Did she know she was losing weight? I know she's only...
What? She was, like, eight at that point?
No. Yeah. She was eight. She didn't she didn't know. Again, like, they were gymnasts.
Right? They were in the environment where being thin was praised.
Okay.
So, yeah, it was just like, I I I even remember peep... People commenting, like, oh, she's gonna look really good in the leotard without a skirt, you know, because she's so thin.
That's what people are excited about. Yeah.
Yeah. People are excited about her her her body shape at that point.
It's funny. My my wife did gymnastics as a young person for a long time, and she's told me that one of the most demanding people in her life was a a Russian gymnastics coach that she
had. Yeah. Uh-huh. The the... It's...
And they... My my girls were in the rhythmic gymnastics, so I don't know. Your wife was probably in the regular gymnastics. Yeah. Rhythmic gymnastics is even worse.
I don't know if you're familiar with it, but...
No. Like, the dancing and the ribbons and that kind of thing?
Mhmm. Yeah. Yeah. Yeah. Because it came out of ballet, essentially.
So they're super thin. They're they're they're not supposed to be muscular, but super thin, very lean, very flexible. And, yeah, I mean, all of our coaches were Eastern European
Mhmm.
Whether it's Russia or Ukraine or Bulgaria. And, yeah, it was a very, very abusive environment
for sure.
I'm... Now I I... You listen to the podcast. Right? You said something earlier that made me think you used to...
Okay. So why are people from that part of the world... Like, why why are they fans? I have a lot of fans from that part of the world. Is there something about my personality that, like, tracks for you?
Really? I had no idea.
Yeah. I... It's it's okay if Okay.
I don't know. I only know of maybe a couple of Russian friends that are in the diabetes community.
Okay.
And... But, yeah, this is this is a surprise to me. So you're saying that people on that side of the world
I
listen to your podcast?
Well well, the the podcast is... This isn't why I brought it up. The podcast charts in, like, 40 countries every day. But Mhmm. But people from, like, that...
Like, kind of that eastern block there, they seem to like my personality. And I don't know. Yeah. I... I'm trying to figure...
I'm try... Oh oh, why? What's the of course there? That's the thing I don't get. Contournext.com/juicebox.
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Well, I don't know. I can't speak for them. I could speak for myself. You know, you you're like... You're super...
I think it's the sense of humor. It's gotta be a sense of humor.
Okay.
Because we... Because you have that type of sense of humor. That's... It it just...
It fits with whatever you grew up with.
You're very direct because Russians are very direct.
Okay. Because what people won't know is that you and I chatted for a few minutes. Like, we had the most inappropriate conversation in the first five minutes of knowing each other that we were both clearly very comfortable with, but it was it was lovely. I felt like I knew you my whole life. And so
Oh, I've known you for five years. I feel like you're my therapist.
Oh, okay.
I mean, this podcast was literally my therapy Oh, okay. In the beginning.
My gosh. Okay. We'll we'll find out more. So you get to the ER. She's not in DKA yet.
That's great. I imagine you weren't there for super long, but it's five years ago now. Do you leave with what kind of direction or technology or idea of what was about to happen? Like, what was
your...... Horrible experience in the hospital. And me having experience of working for hospitals, I was... I I mean, I let them have it. We were there for three years.
It was absolutely horrible. No education provided. We were discharged with, you know, just the generic discharge paperwork. We were sent home with with... Without really knowing what the hell we were doing.
Mhmm. So... And then our big follow-up appointment that you typically have when you meet your endocrinologist and the whole team, that wasn't scheduled until a month and a half away from when we got discharged. So we were sitting, like, not knowing anything, and it was terrifying. So me having connections in the medical world, I started reaching out to people, and I reached out to Barbara Davis Center.
Six weeks until the real appointment13:20
At the time, I... I mean, I'm in San Diego. So I reached out to Barbara Davis Center in Colorado, and I knew people there. And they really helped me figure things out. Like, we were discharged on a p...
Miles per hour. So...
What's the......
Like, Basil and Miles per hour, and it was awful. Like, she couldn't go back to school for a month. And then for the next three months, I literally went to school with her, and I just worked out of her school because I was terrified to leave her alone.
Yeah.
They gave me a conference room. I brought my laptop. I literally came there, you know, and just tried to manage her diabetes from school on my own.
Can can I... I... I'm sorry if I if I flaked and I didn't hear, but what state were you in at that point?
California.
You were in California. Southern, Northern, Central?
I'm in San Diego.
Oh, so a place where you might think there's reasonable health care? Yeah. Okay. Gotcha.
Yeah.
NPH?
Yes. And I didn't know better. Right? I just went home, and it wasn't until I started talking to people from Barbara Davis Center. They're like, what?
You're on on on NPH? This was just five years ago. So we were like, absolutely call the Endo, have them send a prescription for, you know, Humalog, and here's the sliding scale and start doing that.
So do you think the idea was that keep her alive till she gets to the appointment? Is that...
Maybe. I think they... The idea was, like, they didn't wanna stress parents out more than they have to.
Or or maybe they didn't have... They weren't gonna give you directions. They didn't wanna give you the faster acting insulins because they just thought, like, we're not gonna really tell them what to do with this. So the Miles per hour will keep her blood sugar. I don't know.
Like, I don't understand the...
Plus plus she was a kid that was terrified of needles, so they... Maybe this was a way for them to, like, not, you know, to lessen the amount of injections and pokes that she had to do. Yeah. I don't know. But one one good thing that happened in the hospital, the doctor was like, hey.
Buying a CGM herself15:38
I have a sample of Dexcom in my office. Would you like to try it? So he put a Dexcom on my daughter while we were in the hospital. He helped me download the app and set everything up, and that's when I started, like, monitoring her blood sugar.
Mhmm.
And when we got discharged, you know, of course, it takes insurance, like, a long time to get everything authorized. So I was like, wait. I can't, like, I can't be be without Dexcom, so I just went and bought it myself until the insurance company
Yeah.
Authorized everything. But, yeah, that first the first six months were horrible. I was just, like, in the worst place of my life. And I'm a pretty bubbly person. I'm very happy normally, but I was in such a dark, dark place, and I felt so alone.
And I found you a podcast. Mhmm. And I literally, every day, would put my earbuds in and go for a very long walk. And then during that walk, I would listen to your podcast.
And how did it help you? Did it just help you feel grounded, or were you learning things? Was it a mix?
All of it. I mean, learning, I couldn't believe how much information I was learning. I was like... Because at at that point, like, by the time I showed up for our first appointment, I knew everything.
Oh, cool.
Telling the doctor, I'm like, yes. We want a pump because we're gonna be looping. You know? Like, I don't need to talk to dietitian. All of that.
Like, I've already researched everything. I've already learned everything. So
Wait. You Plus? You went in there asking to loop?
Yeah. I... She was she was diagnosed in September. She was looping in December.
That's why that... That's why those winters can't kill your people, by the way. Right? Whatever that whatever that is.
We're very resilient. No
kidding. I'd cry I'd cry and fall over. I know that for sure. I'd be like, I don't know how I got here, but I'm gonna die now. And then I would just lay down.
You you, you just didn't... You went out, got your own information, came back, told them what you were doing. You weren't there asking, I would imagine. Right? You were there explaining to them what you're about to do.
I was just like, all I need from you is a letter of medical necessity so that the insurance doesn't give me a hard time.
Mhmm. Yeah. You had it worked out by then. Do you...
Yeah.
I... I'm gonna be a little indulgent for a half a second. Would you have figured that out without the podcast?
No. Okay. Absolutely not. You know, I I mean, I... So, basically, what was happening, I started listening to your podcast.
And about the same time... You know, of course, I joined some groups on Facebook, and it was the same time where low carb people found me, and I joined their group. So I remember listening to you, reading their stuff, and just agonizing and trying to make a decision on how I wanted to manage Layla's diabetes. So I went with low carb at first, and we were low carb for probably three years.
Going low carb, and why it worked18:57
Okay.
It was a huge change for our family, but they were incredibly supportive. And I also... You know, there was a mom at Layla's school who also had a a kid with type one diabetes, and she was a huge support. And she was part of the low carb community, so I think I just felt supported there. Plus, Leila was an athlete, and it just seemed like it was gonna be easier.
So I was just like, let me try it for a few days and see how I like it before I make a decision. Mhmm. And sure enough, you know, it was definitely more peaceful because her blood sugars were pretty stable. But the anxiety of her blood sugar was replaced by anxiety over having to completely change our lifestyle and always having to be two steps ahead by providing alternatives for her, whether it's birthday party or traveling or just cooking in general. I always have anxiety over her food.
So you you traded one worry for a different worry?
Exactly. But you... I just think... Yeah. I just made my life so incredibly complicated by doing that.
But you you do... There were benefits from the low carb, though.
Oh, absolutely. For three years, you know, it was peaceful. It was peaceful because there were no major spikes, and I was terrified of insulin. I was terrified of big amounts of insulin. So the whole concept of little doses...
I I forget what it stands for. It's like little insulin, you know, causes less chance for
Yeah. The less you
use or something like that.
The less you use, the less likely you are to have, like, a big swing in a direction. Right?
Yes. Yes. I think that concept really resonated with me. And the fact that Layla was always practicing, you know, four hours a day competitions, it just felt... I just felt more safe when there isn't a lot of insulin running through her body.
Mhmm. So... And it worked pretty well. I think she adjusted really well. Our whole family adjusted pretty well.
It's just that I had to work so hard all the time doing that.
Did you, like, make an announcement one day? Like, we're not doing this anymore? Are you still low carb now?
No. No. We haven't been low carb for a couple of years now.
Couple of years. So what precipitates the change again? So I understand how you get to it the first time. It's actually interesting the way you put it is that you were diagnosed. You got...
Your daughter's diagnosed. You get online, and you found a person saying, this is how you use insulin. Like, go ahead and apply it to your life. And you found people saying, if you don't use as much insulin, then you might not have as many swings, and you'll you'll get to that by eating a very low carb diet. And you you made it sound like they won.
They got your they got your attention. Like like Yes. Yeah. So what... How did they how did they get your attention?
Like, what what did they say or do that got you?
I think it was mostly my lack of knowledge of how to use insulin and how to... Lack of understanding in nutrition. I really understood the concept of low carb. You know, the protein causes a slower rise and, you know, less chance of causing a significant low. It wasn't until we started looping, I started really understanding how insulin was working.
Okay.
I think lot of... I don't know. I really don't remember exactly why.
Because it's two it's two different pitches,
really. Two different pitches. Yeah. Yep. I I think it was, like, the fact that...
I think of the... I was thinking of it as two different extremes. Right? Because they always said, oh, you don't have to eat cake to be healthy. So I always thought that it was either one extreme or another.
You have to be the low carb or, like, super high in carb. Yeah. Who who... What happened, really, we just found a balance.
You found a bal... Well, yeah. Who who says you have to eat cake to be healthy? Is there people saying that?
No. No. People were saying you don't have to eat cake to be happy.
Oh, to be happy. Okay. Alright. Well, I mean, yeah, I I I... You don't have to eat cake to be happy.
That's pretty true. But I mean, like, it's a weird... I I find it to be a weird line to draw. Like, I don't know what the... I don't understand why balance isn't okay.
Exactly. And that's where that's where I drew the line. I felt like, I felt, you know, and don't get me wrong. People have fantastic stories and incredible results. And if people could really live that way and manage their diabetes that way, that's that's incredible.
I agree.
You know, if it was... If it were me, I would probably do that, you know, just because I'm I'm I'm that way. You know, I would probably choose an easier way of managing my diabetes. But when it came to a child and just the way... And then I'll get to this later, another child who was in the mix, it was just...
It was... I felt so much pressure. I felt so much pressure from the group, and I think they're incredibly judgmental, which was not working well for my mental health. So... And then that's another thing I realized in this journey is I was focusing so much on numbers and, like, thought that this would would keep my daughter safe and healthy, but the mental health of it all is just as important.
Feeling judged in the group25:06
And I felt like it was, like, destroying me, destroying our relationship, and just... It wasn't worth it.
Wait. The the the eating low carb was destroying it?
Mhmm.
It was. And when you said they were judgmental, you mean the writ large people eating low carb online?
Uh-huh.
How how are they judgmental?
Well, like, all... Like, every time I would, like, read, you know, posts in that group, people bragging about how they eat and their a one c's, I just felt judged. Like, I was I felt like if I wasn't doing that exact same thing that I would be judged.
Were they saying that or is that how you felt?
That's that's how I felt.
That's how you felt. So people weren't you you didn't have people who are saying, like, if you're not doing this and you're doing it wrong and shame. Wasn't like that.
Yeah. It wasn't like that. But it...
I thought that they would if I... You felt... Oh, you felt like if you... If they had the opportunity, they they might say that to you.
Oh, Yeah. Certain individuals. I wouldn't say all of them, but there were
A few.
A few key members of the group that were particularly harsh
and So as a so as a collective, you find the low carb community to be lovely, except there's a there's a few loud voices that make it in hospital before you.
Yeah. And I think they really... Those members drive a lot of people away from what could be a really lovely, wonderful thing for parents.
Yeah.
I think that they focus so much on numbers and the lifestyle that they they just don't think about the mental health of a newly diagnosed family. You know?
Okay. Just... Yeah. Well, it's it's... Listen.
It's sad because, also, I really genuinely believe that low carb is a a very reasonable way to eat.
Oh, absolutely. We still lead by protein and vegetables, and I'm super lucky because both of my kids love every vegetable, love every protein that's out there. So it's... It... It's easy for me.
It was actually pretty easy because my kids have always eaten really well. It's just, you know, we don't just eat protein and vegetables anymore. You know? We've added other things. So we still live...
You know, lead by protein and vegetables, but we just... We know how insulin works, first of all. And Yeah. My my daughter's a one c is 5.7.
Listen. It's 01:00 in the afternoon. I haven't had a carb yet today. I I wouldn't call myself low carb, but I don't eat a lot of carbs. And and I'd...
You know, I don't... I I... It's just... It's strange to me. So here's how I feel like it happens.
I think you've said it, and that's why I really just let you talk and I tried not to interject. I think that people get diagnosed and they don't know how insulin works.
Mhmm.
And then carbs come and highs come and then they don't know how to get the highs down and they put in too much insulin. They get low and then they're dizzy and then they have to eat more and they get high again. And, like, it all just seems untenable.
Mhmm.
And then someone comes along and says, if you just don't eat carbs, none of this will happen. Yep. And you're so out of your mind that you're like, whatever. I'll do I'll do whatever you need me to do, like, as long as this will stop. Right?
But you... Your whole life, you haven't been eating that way. It's not your choice, Dieter. I'm I'm not wrong about this. Right?
You didn't want to be low carb. No. Right. You wanted to stop the problems. And and then you go find people who are like, hey.
Look at my look at my graph. Look at how flat it is. My a one c is 4.8. Yep. You you know what I mean?
And so see it works. And then when you say to those people, well, I think you could probably accomplish that and have a few more carbs, they go, no. That that can't possibly happen. Now is that because they don't know how to do it? It...
Why converts become evangelists29:16
Are they are they one of those people who were, you know, like, thrown into this thing unfairly, didn't know what was going on, found low carb, low carb saved their lives, and now they're evangelists about it because it's the thing that saved them, which by the way would be......
A religion. It's like a cult and religion, and then they, know, they, like, they don't wanna preach anything else.
No different than if somebody found AA and it helped them. They're gonna tell you AA is the only way through this. You have to do it this way because it's what worked for them and it saved their life and they are genuinely out there trying to help other people. I I I believe that wholeheartedly that I think that when people find something that works for them, especially when they were in a dire situation that they couldn't find another way out of, they will evangelize it at that point. And Yeah.
All I've ever said was, I think if you know how to time the insulin and use it correctly, you could probably have those outcomes and eat whatever you want. Not saying you should eat whatever you want. I'm not saying go, you know, spend your day, you know, working down carbs. Like, that's not my point. My point is that if you...
I think my point is the rest of your point, which is that there is a mental aspect to this too. Mental health is important as well. And if you're a person who's running around with a four eight and you're super low carb and that's the thing you're comfortable with, then God bless. I think that's wonderful. But if it's you and you're out there trying to do the same thing and it's making you crazy and tearing your family apart, then to tell you to stop doing it is gonna kill your kid is a...
I mean, that's too much pressure, I think.
It is. And that's exactly what was happening. Yeah.
Yeah. No. I've been watching it
for a while.
I see how it goes. And I and I have no... Like, somebody will take this the wrong way. I I I... You eat any way you want.
I couldn't possibly care less. Like, you you know, like, just do whatever you think is right. What I'm saying from my perspective is, I think if you understood these tools, you might be able to eat a different way and and have still reasonable health outcomes.
Yeah. It's just it's just willingness to learn, and I and I think that's how I am. Right? And then that's what your... I I did not stop listening to your podcast.
And and it's funny because I actually have to hide the fact that I was listening to you.
You mean from the other people online?
Yes. They... Some of
them don't like me. Yeah.
Oh, yeah. I know that. But I was religiously, like, listening to you every day, and I... You know, even though I made a choice to low carb, I think I was just listening to you for the therapeutic effect. You know?
I just really enjoyed listening to how you were asking questions, listening to other people. I think it just made me feel less alone in this. And then your podcast is still the place I go to for information. So, like, if I wanna find out something something about something, I'm like, oh, I should probably search in Scott's podcast. He probably has talked about this.
So I save myself time researching and filtering through information online, and I just go to your podcast because I trust it.
Thank you. Don't don't miss the frequently asked questions page on the website now too, by the way. Just really fantastic place to ask questions. Well, by the way, not to be... I'm not sour.
I don't I don't really care. But, like, if you're in the the... You know, if you're part of that, like, low carb community and you're part of how it works, like, listen to what she just said. She she opted for a place where she didn't feel judged. You could have made her feel that way.
There's there's no doubt that there could have been an ecosystem that talks more about low carb and is is prescriptive about how to do it that would have felt supportive, and you'd probably still be there doing it if you felt supported. Yep. And you're not... Listen. I'm not just talking from your...
If you think you're the first person to tell this story on here, you are certainly not. Yeah. Exactly.
I know. I'm not. Yeah.
No. I mean, again, most of the people I've met who eat low carb are lovely. I've... No... I've no trouble saying that.
I'm still friends with with a lot of them.
A ton a ton of them, honestly. And... But to your point, like, the few that feel like they might be unhinged, like, they really they really feel unhinged.
And... They are in the leadership
of it, so that's what's sad. And I and and I
also wanna say that I... I'm assuming that right now people think, oh, I'm thinking of a person. I don't know anybody's name. I don't care. Like, if you're listening to this right now, I don't know who you are.
I I I couldn't... Again, I couldn't possibly care less. Like... But what I can tell you is that the vibe coming from your movement is that of iron fist do or get out. That's that's the feeling people have from it.
The iron fist problem34:01
And and listen to what what this person is telling you. Some of the people you have there that you're counting as, like, loyalty or membership or a measure of see this works, they're being held hostage Mhmm. Because they're afraid. They'd love to leave, but they're afraid to. You've scared them into thinking they're gonna kill themselves or their kid if they leave.
So instead, they're gonna stay behind and be miserable, and you're counting that as a win. I'm telling you, I think there's probably a way to support those people and let them feel like not only are they there by their choice, but it's a comfortable happy place to be. Yeah. Yeah. But I don't know.
Listen. I can make a joke here, but maybe if they had a cookie. You know what I mean? They...
Oh, boy.
Just chill out a little bit.
Oh, absolutely.
I don't know. I don't know them. I mean, maybe they... You know, they might be lovely people. Maybe they just come across poorly online or have...
You know? But I... I've intersected a few people over my over my time, and I thought, wow. That's aggressive.
I think it was also, like... I'm not saying everybody, but some of those parents truly viewed the success of their child's blood sugar as their own accomplishment. Oh. It's like almost, like, borderline narcissistic behavior.
That's... That I don't know about. That's a different problem. That that exists in all different spaces too. Also It does.
Also, the thing you just described, trust me, we could go to a guppy breeding Facebook group, and the same stuff would be going on. Like, I... I'm... I just picked the most ridiculous thing I could think of just now. There's a group of people out there somewhere, I guarantee you, who breed guppies, and they they probably have every one of these problems in the group.
I've purposely and painstakingly... Are you laughing about the guppy stuff? I've I've purposefully and painstakingly set up my Facebook group not to work that way.
Even... I... I'm not like... I don't read anything in the groups anymore. I don't go.
I don't feel like I really need it. I don't feel like I need the support. I don't feel like I need the information. All I do, if I need something, I just listen to the podcast. Yeah.
That's all.
Oh, listen. Also, I'd like to thank all those people for not knowing how to be open and and supportive because eventually, they all make it to me. Like, the... Yeah. Yeah.
So you're fine. Like...
I think they're secretly all listening.
I... Well, maybe it's their goal is to make everybody come to me. I don't know, but they're doing it. My group is so active. It's insane.
Like, when I tell people how... Like, when I tell people the activity level in that group, people who don't know what they're talking about are like, that sounds like a lot. People who are actually in that space, like, the the marketing people, which you can't market in a group, which is nice because then they... You know, you you actually... There...
That might be one of the things Facebook has right is you... Groups are not a place where you can market to people, which I think is Mhmm. Is good. But even when you just share it as, like, the the idea of, like, well, this is how many people the podcast reaches. This is how many people the Facebook group reaches.
This is kinda like the ecosystem of the... Of JuiceBox and what it touches. When you tell people who are in that in that, like, profession, they're like, I don't know how you have that much. How are you doing that? And, like, and how have you been keeping it going for so long?
Like, big secret. Make it a nice supportive place.
Mhmm.
Not that hard.
Exactly. It's not... It's really not that hard.
Yeah.
Yeah.
That's it. And and we probably...
As long as you're kind. As long as you're kind to people.
We've probably kicked out or banned fewer people than any group in Facebook. Like, I swear... Percentage of people who have been set... Have been told, you're not welcome back here versus the percentage of people that are there. It's insane how low the number is.
Aw. Yeah. Because we also rehabilitate people. Like, we'll be like, look. Hey.
Be cool. Like, what are doing? Just chill out. Like, you know, you don't you don't have to yell at everybody. Like, you don't to get upset.
And the people... And sometimes I get notes. People are like, oh, I'm not upset. I'm like, well, you should read what you wrote. It feels like you're upset.
You you you know? And then the... And other people are reading it that way. And you spend a couple minutes with people saying, like, maybe you're not communicating the way you think you are. And, you know, like, give that some consideration.
And then then if they don't, then kabam. They're gone. But, like, but you're not... And you're... It's not free speech.
You're not welcome to come into the middle of the party and sit on the floor and run away and laugh. Like, that's not okay. You you know what I mean? Like, if if that's what you're gonna do, then you get to leave. And, it's just not that hard.
Anyway, I I... There is a note in here from you. You didn't put a ton in your intake, but Mhmm. Did eating low carb cause an issue for a family member, not the type one? Mhmm.
Yes. What happened there?
So, I have an older daughter who is 16. She's turning 16 on Thursday, actually. So, and she was my, big time athlete. So she was, like, competing on national level, you know, traveling internationally. And she...
Well, first of all, right, I mentioned it earlier. It was in the environment that she was in. It was very toxic, very high pressure. She never struggled with weight. She was always very, very thin and athletic, but she was in the environment where her teammates were constantly scolded and body shamed, and it was awful.
The turning point39:28
So I think that was a really big trigger for her. But this... I'm not saying that the low carb triggered her eating disorder, but it certainly did not help when she started to struggle given the environment that she was in.
Oh, I'm sorry.
So, yeah, it was probably the turning point for me to move away from such a restrictive eating lifestyle. It was pretty scary. I I... I'd like to say that I caught it early. Thankfully, I have friends.
My... Actually, one of my best friends. She's very knowledgeable in that area, and she was like, Dee, she's, like, dying in front of you. Like, you need to do something. So she had gotten an injury at one point.
She broke her toe, and she started restricting her food intake. And it got to the point where she realized she was, like, crying on the floor to... Because her coach and I told her that she would need to gain at least two or three more pounds to be able to continue gymnastics. She was crying on the floor, bargaining with me. Could we make it only one pound instead of two...
Three pounds? So that's the time I knew that it was really bad. The next morning, I called Centers for Discovery. It's like an eating disorder center. And went through screening.
She had actually qualified to go into the residential care, but there was a two week wait for the spot. And I told her about it, and she started begging me, of course, not to send her there, that she was gonna turn things around, and she did. She did. So it's like operation feed Chloe. She...
I wouldn't I wouldn't say that you... I don't think that you ever get cured from it. It's it's a con... Constant work, but she's doing way better. She's not in that environment anymore.
She retired from her junior career last summer, and she decided not to go into the senior category. She went into a regular high school because both of them weren't homeschooled for a few years. She went into normal high school, and she's living the life. Wow. That's awesome.
That was pretty much the turning point for me because I'm like, okay. I'm trying to keep one child safe by restricting her food intake while I'm killing my other child by having this philosophy in our household. And here I am in the middle of it too, you know, struggling with how do I eat. You know? Like, I'm an early perimenopause, and I'm, like, having all this stress in life and having a hard time losing weight, and I'm super conflicted as to how I'm supposed to be eating.
Yeah. What's the right thing?
It's Sophie's choice. Yeah. Yeah. You're supposed to pick, like, one of them gets to be healthy is how it must have felt. Oh, jeez.
And then it's like, I think she just... I mean, I'm not saying that, you know, low carb triggered the whole thing. No. I it was mostly the environment. But when she would come home, you know, she she felt like carbs were bad.
Carbs were killing her sister. Mhmm. So, of course, you know, she developed this unhealthy relationship with with carbs as well. So not only she was restricting, but she was, like, eliminating carbs. You know?
She started ordering burgers without a bun. And I'm like, Chloe, why are you doing that? You don't have to do that. She's like, well, I don't wanna eat carbs. And it was probably because in her head, it was it was like poison.
Yeah. No. I I don't I don't not understand what you're saying. It's it's incredibly unfortunate, obviously, that that she maybe had a predilection to begin with and then all this got kinda wrapped around her and probably whisked her right away. You know?
It's Yeah. It's... Listen. You... Diabetes, I think, it it puts you in a bizarre relationship with food immediately.
A bizarre relationship with food43:50
Mhmm. Like, there's just... You know, food is now medicine. Food is now punitive. What'd you eat?
What'd you do? What happened here? Why is this number like this? You know what I mean? Like, that's...
You're gonna have a weird relationship with food one way or the other if you have type one diabetes. And and if you're on the, you know, if you're on the borderline of something like this to begin with, I think that's why, you know, eating disorders with type ones is is more prevalent, I think, than in the in the general population. And and so be aware of that. It's always sort of been my point. Like, you know, listen.
There are plenty of people who don't eat healthy. And if if you were a dietitian with a magic wand, there are plenty of people who you'd go, hey. Look. Don't eat that. What are you eating this for?
This is... Don't... That's not even food. Like, you know what mean? Like...
But but it's not it's not a thing you can just wave a magic wand at. If it was, the whole world would be healthy. We'd all be out jogging and eating the right amount of protein every day and the right amount of vegetables and all the, like, things that would be nice and balanced for our bodies, etcetera. Just stuff doesn't work that way. And I think what I did was I recognize is that that's not how people work.
You don't you don't just get to tell them this is the right thing to do and then they do it. So in the meantime, they still have to live their lives. And to me, the only thing that makes sense is understanding how to get your settings right and how to time insulin so that you have fewer spikes, fewer lows, more calm in your day, as much tranquility as possible so that you can kinda ride through this thing, whatever the hell this all is. You you know what I mean?
Yeah. And also knowing what to do at every given situation, that's... That that was the realization for me. I'm like, I don't know if Layla's gonna wanna be low carb when she grows up. She might as well...
She she might choose that lifestyle, but I've really wanted to give her an opportunity to learn everything. You know? I want her to know how to bring her blood sugar down, and we know. Like, she knows that a walk never fails. You know?
If we have a high that we can't bring down, she knows that if you just inject a little bit of insulin, drink water, and go for a fifteen minute walk, it never fails.
Here's what happens.
Always brings your blood sugar down. So I just want her to know all of those strategies and how to, you know, understand how insulin works, understand the nutrition, understand the exercise so that she could make the choice. The more you know, the better you're off in making those choices later in life.
I just always imagined, like, what if you what if you raised a child low carb and, you know, everything's fine and you're kind of in control of things so it's working. And like you said, there's a lot of pivoting and a lot of, like, how do you make sure there's something there when they needed it up, you know, at an event or something or out out to dinner or whatever. Imagine you send that kid off to college and you just got...
You don't know what to do.
And they... And you just, like, keep eating low carb. And one day they go, I'm gonna have pizza with everybody.
Uh-huh.
Imagine all the functional diabetes things that they don't understand now.
Yep.
Yeah. And and so I don't say that you can't go eat low carb at college. I say, what if that doesn't happen and now you don't have the skills and the understanding? Like, gather up the skills and the understanding and then go eat low carb if you want to. Like...
Or worse. You know, like, my mind catastrophes of things. I always think I'm like, what if there's, like, some sort of emergency or, like, some sort of catastrophe, right, in the world that happens?
You're a mom. Like, you you got a different you got a different gear than I'd have. Like, trust me. If it if it gets......
Is, like, you know, like bread. I wonder if
you know what to do for that bread.
Yeah. Listen. If zombies come and we're all stuck eating Wonder Bread, there's gonna be larger problems than your kid's
blood sugar.
You know what I mean? So... But but but I hear... I take your point. You know what I mean?
I Yeah. And I and I also think it's brave of you to come talk about this because I've seen that community be punitive to each other publicly before. And Yeah. And I I I think that's shameful, by the way. Anybody that...
I I literally heard stories about people having to get restraining orders against local Oh, god. Against people Wow. Online. Yeah. Yeah.
Yeah. So imagine that. Imagine imagine that your your online crazy finds its way into the real world. Like, you're like, oh. Yeah.
It's happening.
Speak of mental health. I
mean, you know, it's a it's a strange... Or I've I've I've seen people told, like, directly online, you're gonna kill your kid, or you don't... Or or they call... Or they'll call me an insulin pusher or a carb
pusher or something like that.... Really harsh things.
Yeah. Yeah. I'm like, oh, wow. Jeez. You should find a therapist.
You know? Also, I know people who have that level of, like, energy, and I know other people that know them that say that... They'll say, look. These these are good people. They just...
They're very and then they can't find a word to describe it. Because they they know them and they like them, so they won't call them aggressive. They mean it.
They're passionate. They're, like, super passionate.
They call... They'll end up calling them passionate at the end. But if you... But you... That's not what they mean.
You can hear in the pause Yeah. What they mean.
Yeah. Yeah.
Yeah. So, anyway, like, I think
you guys have
a great message. I'd go deliver it better and stop stop making people have to get restraining orders.
Exactly. It's about the delivery. You're right. It's not so much about the message. It's just the the the style and delivery.
It's a great message.
Nicer.
I find it to be great...... Supportive.
I find it to be a great message. Lower lower intake of carbs means a lower amount of insulin, means less chance you're gonna get high. I say it. Like, I mean
Especially for kids. I think it works really well for little ones. You know? And I think that's kinda why a lot of parents kinda fall into that category.
Right. But you don't get to get out of pitchfork and chase me through the streets if my kid has a cupcake. Or I say online that, like, I was thinking of maybe, like, going to 40 cars a day Mhmm. Or whatever. I don't know.
I've I've seen it from afar. I've... You know, a couple of times, they've tried to bring it to my doorstep. I just... I I don't open the door.
I go whatever. What else do you wanna talk about? You got anything else?
Okay. So we looped for three years. You know, wonderful community. I found a mentor who essentially mentored me through looping from the low... Low carb community.
Nice. And
developed great friendship with her. So looping was amazing, which is why when my daughter told me this past December, she wanted to take a pump break. I freaked out. I thought it would only last for a couple of weeks, and then she would go back, but she's still MDI.
Still on injections, by choice50:54
Oh, good for her. And she found a nice rhythm with it? Is it working?
She did. She's wonderful. Her last a one c was 5.7.
Look at her.
And two weeks ago, we tried GLP.
Oh, yeah?
Yep. And I... I've been using GLP for nine months myself and have had amazing results with it. And I talked to Leila's endocrinologist, and I was like, I think she's incredibly insulin resistant, which she probably was. She was taking, like, fifty units of basal on top of probably closer to forty to 45, just like rapid insulin.
So she was... And she was still not super stable. Mhmm. Probably because of puberty and whatever. So her endo was super supportive, and we have an endo who is also type one herself.
So she's like, yeah. I've been taking GLP for two years, and I've had great success. And we injected Leila with her first GLP couple weeks ago.
Yep.
And, oh my god.
As a result,
I did not ex... I did not expect this.
What's the percentage decrease in insulin needs, do you think?
Well, we're still adjusting. Right? Because it's still... It's only been, like, a week and a half. Mhmm.
But she's now on 30 to 35 basal, and she barely has to even inject her food. Maybe one unit at a time for things like breakfast even. Yeah. That's something. Huge reduction.
Is she able to...... Not even done yet.
Is she able to eat? She's on a low dose, I imagine.
She is on a total of two milligrams so far, which might be a little too much because she is struggling with, like, her appetite.
Mhmm.
You know, she's like, I'm not hungry, especially in the mornings. So we might reduce it even more.
Yeah. That's awesome. Yeah. Keep going. Get...
I think there'll be, not a doctor, not advice. I think there's a tipping point between hunger and impact on blood sugar. You'll be able to find it. Just keep kinda going down.
Hold on, Scott.
Let me, I think my AirPods died, and I need to put you on the speaker.
That's okay. You're fine with that.
One second. Do that. Can you hear me?
Yeah. Absolutely.
Okay. Sorry. My AirPods died.
No. You're fine. I... There's a... I think there's a balance point between hunger and insulin impact.
And Yeah. You just gotta keep going down, like, very slowly. I I don't know, like, what needles they gave you if it's milligrams at a time, but you could also try using, like, insulin needles so you can use less.
Yeah. I have insulin needles, insulin syringes, and vials of of that bound. So Yeah. We definitely have the flexibility of, her dose. Her end also told us to do microdosing.
So instead of injecting once a week, inject twice a week.
Oh, look at you. Your endo is using it herself. Right? Yep. Yep.
She knows. Okay. Yeah.
I She
knows. I'm I'm of that opinion to some degree too that you just Mhmm. There's in a way to impact the insulin resistance without impacting the hunger, and I think that that's where the answer is. It might be more frequent, much smaller doses. There's, there are studies going on right now about it for type ones.
So you'll see... You're gonna see hopefully better... I mean, god, I I I like to say that it's gonna come sooner or later, but it takes, you know, it takes forever for doctors to figure stuff out. But, like, eventually, you're gonna see better guidance on usage. I imagine that you'll see GLP usage for type ones be talked about more the way you talk about insulin dosing, which is there's an amount you need and a timing that...
That's right for it, and you'll find it at some point. Like, I I hope that's how it gets just, you know, at some point.
I hope so too. I'm super stoked that it worked so well for us. And, yeah, I'm I'm looking forward to to, finding our new settings and getting some stability, but I am super pleased. Super pleased.
How'd it work for you? I'll let you go in a minute. You're probably at work. But Nope. I'm good.
Oh, you're good? Okay. You said you started using it nine months ago?
Yep. Yep. I started using it nine months ago. And it's funny because when, I decided that I wanted to try it, I listened to a few episodes on your podcast. Like, let me let me hear what Scott has to say about that.
So after learning everything I wanted to learn about it and getting confidence in it, I, scheduled an appointment with my OBGYN, and she was incredibly supportive. She's like, yeah. You, you're not obese, obviously, so the insurance is not gonna cover it. So... But if you want, I could add you to, like, a direct to consumer program with Eli Lilly.
Her own GLP, and perimenopause56:12
And if you're willing to pay out of pocket, I'm willing to prescribe it to you. Mhmm. She's like, I feel very comfortable prescribing it to you because you already, you know, know the benefits of exercising. You eat well. And then perhaps this is just the boost that you need, considering that you might be in perimenopause and struggling with weight loss.
So I never, went above the starting dose. So two point five milligram was always the only dose I've taken. And I started GLP last September, and by December, I had already lost all the weight I needed to lose, which was 22 pounds.
How do you feel? Can you... Forget how you look, but how do you feel?
I feel great. I, you know, I... No. I was relatively healthy, so I don't know whether it made an impact on other parts of my body other than weight. But I I was lucky to not really experience any bad side effects from it.
Oh,
that's I do know. Just... I'm just so happy that I tried it.
So what do you think it changed for you? Just... Is it just hunger, or is it?
Yeah. I think hunger. The food noise, the hunger, definitely, that was probably the key to my weight loss.
Okay. That's awesome. Good for you. I... Yeah.
Yeah. I just... Do you sleep better? Is there anything else you got out of it? Or just...
Do you just feel better about yourself, which there's nothing wrong with that either? But
Yeah. I think I just feel better about myself. I... You know, like I said, it was all around the same time where I was figuring out my hormones. It was right around the same time I got on the, like, a estrogen patch.
So I don't know exactly what contributed to my sleep. I did struggle with my sleep. Uh-huh. But I don't know if it was the hormone or the GLP that contributed to the improvement. So, but, yeah, I feel great.
Yeah. I can tell you that my my wife uses... You know, she's using a patch, like, you know, for perimenopause and Mhmm. The GLP for, you know, similar ideas as yours. And, I mean, she's just, like, in a...
Such a different situation now. It's, it's really awesome.
It is. It's mentally amazing, and my joints don't hurt. But I think... I I don't know if it's GLP or the hormones, but I remember waking up in the middle of the night just, like, having pains in my hips and then my, like, elbows. It was, like, deep, deep, deep, deep.
It wasn't like muscle pain.
Yeah.
It was definitely a joint pain. So... And that's gone.
Yeah. Hey. Listen. Whatever. Right?
I... It's like, the better is
Yeah.
Yeah. Yeah. I know people are like, well, what about this? What about that? I'm like, what about the other stuff?
I don't... I I never understand the idea of, like, we'll take the problem you know over a possibility of another issue because I don't even know what they're talking about. I... People are always like, well, it hasn't been out that long. I'm like, it's been out for a decade.
Like, what are you
talking about? Like Yeah. Exactly. It's been out for a long time.
Mhmm. You haven't known about it for that long. It doesn't mean that it hasn't existed. And, I... I'm excited for the next one, be perfectly honest.
That triple agonist that Lilly's putting out, I wish they would
Oh, really? I didn't hear about
that.
I can't pronounce it, but retruditide or red red... I don't know how to
say.... Do?
Well, they say that it's going to quell your hunger, but you can still eat. So right now with this one, it feel like I'm not hungry. Like, I Yeah. You know, and I don't... Like, I don't need to eat.
Like, I I will, but, like, I don't have to. Mhmm. This one, you're gonna lose weight but still be hungry. And it's gonna... I don't know if I wanna say promote muscle growth or or maintenance or whatever, but the...
I think the the muscle impact of it's supposed to be different. I don't understand why yet. I'm... I know it's in testing right now. I know that people are buying it gray market from overseas for a while now.
A lot of the, like, bodybuilder types and stuff like that have been using it for a while. I know people who are on it who are, like, you know, building muscle, losing fat, having all the other impacts that they're looking for. I mean, it's a it's a better living through chemistry world all of a sudden.
So I've always said that it would be nice if it wasn't, like, an extreme. Right? You're either not hungry at all for anything or you're eating... Like, it would be nice if you were hungry but hungry for good things.
Oh, yeah. Listen. If... And I agree, but it sounds like they might be getting to it. Like, it's Maybe.
Yeah. So, I mean
because I just want... Like, I wanna eat, like, normal stuff. I just want the food noise for all the crap to be gone. You know? Like, I just want...
Don't wanna be craving chocolate. Like, I don't wanna be craving cookies. Mhmm. But I certainly would wanna go and, like, be hungry for a good meal.
Can you take a bite of something now without eating... Like, that's what I find is that in in... Like, for a cookie or chocolate as your example, like, I could take a small piece of chocolate and eat it and go, oh, that was good. And then Mhmm. Walk on and keep going.
Yep. Yeah. Yep. Whereas before, you you might take two or three of them or that kind of an idea.
Yeah. Yeah. I'm still doing 2.5, and I feel like my body had probably gotten adjusted to it. I could probably go higher, because I definitely feel like my appetite is back. Not not, like, to the extent that it was before, but it...
It's definitely more... I feel more hungry than I felt when I started the 2.5.
Yeah.
But I don't wanna increase because I'm happy where I'm at. Like, I don't wanna have the side effects.
Also, is your weight changing with the hunger?
Yes. So, basically... So I started in September. I was, like, one fifty. I got down to, like, one twenty seven in December, and I was looking at myself in the mirror.
I'm like, okay. I gotta stop. Like, this is starting to look really unhealthy on me. Mhmm. So, that's when I started to to reduce the 2.5 to only, like, half, and, I felt better.
So I've gained about five pounds back, and it stopped.
Okay.
So I'm able to maintain that weight on the 2.5.
Yeah. I have to say, like, my lowest weight was... I don't even know what it was. But I I found... I don't know.
I found a balance with it. Like, I shoot a... I, you know, I do 12 and a half. And I can eat fine. I'm not hungry, but I can eat fine.
Like, I'm gonna go downstairs and eat and be very happy eating and all that stuff.
Mhmm. Mhmm.
But I did put a few pounds back, but I I don't see it. So my assumption is that it's muscle because, or, you know, just other... Or my body re... I've lost more weight than you have. So you're not gonna see, but I've watched my body, like, reshape itself for, like, the last two years.
Like, I... Like, like, my physical form keeps, like, morphing. And Mhmm.
And Do you still wanna lose more or you're at the point of I
have I have, what I would, like, describe as, like, a couple of handfuls of fat around my midsection
Mhmm.
That I don't think is gonna go away without, like, some aggressive, like, exercise that I don't seem capable of is what I'm feel like I'm learning. I actually just sent a note to my doctor yesterday and I said, I I would like to know if there's some sort of... You know, is there something I could be doing taking... I don't even care, you know, whatever to to kinda aid in this part of it because my exercise is not leading to gains. It's just leading to stability.
And it... I... You know, I'm pretty careful about how much protein I'm eating and stuff like that so I'm not at a deficit. And it's just like... I just...
I'm older. You know what I mean? Like, I'm not gonna...
Yeah. I was gonna say, what about the hormonal changes too?
Yeah. Exactly. Like, I'm not gonna I'm not gonna turn into, like, Lou Ferrigno nineteen eighty three out of nowhere.
Yeah. Without an extreme effort.
Yeah. Yeah. And so... And and and so, like, is there something... Because I'm also not looking to be like that, but I would like to be a little stronger and, like, just for, like, body stability as I get older, not that I'm having trouble now, but I'm trying to think about the future.
So I'm gonna go talk to the doctor and see what he says. I don't know what he'll say, honestly. I didn't give him any ideas. I was just like, is there anything I should be doing or could be doing?
Mhmm.
So we'll we'll wait and see. And I will a 100% try the the other offering from Lily as soon as I'm able.
Oh, yeah. That's interesting.
I'll give it a whirl.
I'm very curious now too.
Yeah. I'll give it a whirl. I don't care. I'm I'm in now. You know what I mean?
Like, I I... Yeah. You you you got...
I'm in for life.
Yeah. You got me. I'm a believer. So... Yeah.
I mean... Sure. Yeah. I... It's just stopped where Arden will text me pictures of myself fat.
Like, that... That's that's finally ended after after a couple of years of her being like, oh my god. Can you believe this is what it used to look like? I'm like, thanks. This is great.
That's on my phone too. So... But, anyway, I... Well, I appreciate you taking the time to do this. It's really, really lovely of you
to jump giving me the opportunity, and thank you for being there, and thank you for being you. You you... You've you've really saved my saved my life, I think, with the time.
Thank you. Well, I mean, listen. Anytime anybody wants to come on to talk about how fantastic I am, I think it's fun. You are. We should definitely
And I hope I I hope I get to meet you sometime in person. We'll see.
Where where could we do that? Are you... Like, you go to the events? Like, do you go to, like like, Friends for Life or ADA or anything like that?
Afrezza, and what it still lacks1:06:40
See, we just... Like, we've... We never did anything, really. We just, this year, started, like, participating in some things and some events and local events. Like, my daughter went to a diabetes camp for the first time ever this summer.
She went for a week
She liked it? To sleep away camp. Did she like it?
She loved it. Good. She loved it. Yeah. It was fantastic.
And, she... It's crazy because that was the week we were trying Afrezza.
Mhmm.
And, it's just like... It wasn't the right timing, but they, like, they were like, well, you have to stick with one insulin. You can't use injection and Afrezza. So poor thing had to, like, be on Afrezza the entire week, which was, hard because we hadn't figured it out. We Okay.
Went off of it because it didn't work for us at all.
I just interviewed somebody two days ago. 14 year old kid, he exclusively uses Afrezza. He loves it.
Funny. I forgot to mention it to you. But, yeah, we... I mean, me... Me...
Being me. Right? I try everything. I try everything that could possibly help us. But, yeah, we tried Afrezza.
I was, like, one of the first people. You know? As soon as it got approved for kids 17, I was like, yeah. I want this. So I made, like, a ton of phone calls, got our endo...
Endo prescribing and, you know, got... Insurance wasn't covering it, but they added us to this program, which we only beat, like, 35 for
To try
it. Afrezza. She tried it, and she developed a horrible cough, which was like... She was coughing really bad, and even her voice changed.
Oh, okay.
I wonder if it would be better now that her doses are super tiny because she was having to inhale a lot of powder.
How... What... Was she doing, like, a 12 for a food or a...
Yeah. She was doing eight and twelves.
This kid I just interviewed, he's like... He he said, I get up for breakfast. I do two twelves for breakfast. And if it goes up, I'll do, like, another four sometimes. He loves he loves...
It... It's just like everything else. It works for you or it doesn't. Or you know what mean?
It works really, really well and really fast. Mhmm. Like, if you are trying to bring the blood sugar down or if you're, like, drinking Jamba Juice or something that you need something super fast. But because she's eating relatively balanced meals, you know, where there's a lot of protein, a lot of vegetables, a lot of complex carbs, and she might have fruit or dessert after her meal, the timing... We just couldn't get the timing of those with Alphrezza.
It was working too fast for what she was eating.
Okay. Well, it's interesting. I mean, it is part of what I talked about with the person I interviewed is that, like, the one thing I think Alphrezza still lacks is a coat. Even people who use it and love it have a hard time about being coherent about explaining it. And and I think it just needs more people to have more experience with it so they can talk about it in ways that are ways that you can mimic and understand.
But right now, like, I told the person every time I hear somebody talk about Afrezza, feels to me like somebody's like, I don't know. There's a four and a two and an eight and a 12 and a... And I'm like, I don't know what you're talking about. And at my worst, it doesn't sound like you know what you're talking about. You just know that it works, and you figured out, like, a pattern, but, like, you're having trouble explaining it.
And... Yeah. Yeah. I just
think we need... I I know enough that it's, like, one to two match. So, like, if, you know, one unit of Reza is, like, equal to two units of injection, so we kinda won by that.
They also sounds like it didn't work for you.
I think it was the timing for us, to be honest with you. Not so much the dosing, but the timing.
Did she get high or low from it?
She would go super low, and then once a... Because Afrezza leaves your body super fast, and then she would start rising.
Okay. Because you try to catch the low, and then there was way too much.
Right. Right. So I'm like, do we just inhale after you're done? We've tried that too. So it was just...
We didn't have enough time to really
Pick through
it. Mess with it. She just developed this terrible cough, and she's like, I don't wanna do this anymore. So we still have it in our fridge for when we really need it. And I feel like for when you have a super sticky high, this is great.
Mhmm. But now that she's on GLP, don't think we will... Yeah. See that.... Ever gonna need it.
Yeah. No. I mean, you should see I mean, you should see Arden's graph on GLP. It's... I mean, I'm sure your daughter's looks very similar.
It's it's insane. I...
It's amazing. The first week when she injected her first GLP, she was obviously on a really high basal. She was she was still on, like, forty six units of basal. And then, like, the first twenty four hours, she did not have to dose for meals at all. Like, nothing.
She would be eating bananas, grapes, ice cream. Like, we were putting it through test. And it was amazing. She's like, I love this. But at night, she was dropping into forties, and I'm like, okay.
We have to start decreasing your basal.
Mhmm.
And as soon as we started decreasing her basal, you know, then that's when she needed a little bit of help with
It's it's... Mean, obviously, Arden's insulin needs change, and they'll... And they shift throughout the week too as the GLP, like, wanes. So that's where kinda being on, like, a system that is adjusting more with your needs is helpful. I I would tell you that I...
I've noticed that people in... Like, really in the know with type one who have some sort of Vinson resistance. If you ask them kinda quietly, how are you managing this? They have an AID system. They're using GLPs, and they're...
That's where they're getting these kind of, like, crazy outcomes from.
Oh, yeah. I just I just went to a happy hour organized by breakthrough t one d Mhmm. For the first time. I was just like, okay. I'm gonna go join and talk to these people.
I thought I was gonna show up and be like, guess what? You know? Like, we're having great results with GLP, and then they're all on GLP.
Yeah. Everybody's like, oh, yeah. Us too, honey.
Yeah. We've been on it for a couple of years.
We we heard that podcast too. We're good. Yeah. Exactly. Well, that's cool.
Like, it's it's nice to know that, like, people are learning about it and... Because it's gonna become commonplace. Mhmm. And and I'm excited for the people it's gonna help. It's not gonna...
It's not right for everybody. I know that for sure. Yeah. But when it works for people, it really works for them. So...
Oh, yeah. Yeah. Anyway... Alright. Well...
Russia's Russia's making their own GLP now, I find out.
Are they really?
Yeah. They're manufacturing manufacturing their their own own GLP. Well, because because nobody in Russia right now has access to even insulin. Really? That's that's produced in the market.
So they're producing their own insulin and their own GLPs, which insulin sucks, but GLP seems to be really good product.
Look at them getting on it. That's not... I... Listen. I I have a theory.
I think that... I think a generation from now I think a generation from now, you will... You you will be hard pressed not to know somebody who's not supplementing in that way somehow. And that I think it could fundamentally change a generation of people. Like, I've heard people make this argument.
It's a hard argument not to agree with. GLP could could change the health care system.
Mhmm.
It it really could. Like, when you look at all of what weight does to the body, you know, all its many forms and functions. Right? You... If you take a generation of people, have them lose weight, but moreover, not have them live a life where they're like Oreos, more Oreos, and then and then their kids don't grow up that way.
You could see a generation of people's children grow up with a firmer grasp of of their, you know, their their caloric needs, their their nutritional needs, etcetera. These drugs will probably continue to change to where, like you said, like, people will maybe be more hungry on them and at the same time be able to, like, you know, maintain outcomes. You have no idea what things could look like. Like, two two two two rounds of babies from now. You you know
what what's gonna happen to the food industry too. They're gonna have to adjust because nobody's gonna be buying as much crap.
Maybe there won't be as much money in poisoning us anymore. And then...
Exactly. Maybe they'll do something better for us.
Well, they'll just go out of business, take all their money, and and go away. But, like, at least they won't be making, you know, purple soda and green potato chips and everything or whatever else they're doing.
Right.
So, like, maybe... I actually think that that could easily be the case. I don't know that I'll live long enough to see it, but I think that's where it's going.
Yeah. It's wonderful.
Yeah. And now Russia's in on it too. I don't know how you're gonna make it through the winters without the extra, but whatever. Yeah. You're gonna have to develop GLPs and better heaters all at the same time.
We have fur. You
have to hold on for a second because you're gonna pronounce your name for me. So thank you for doing this. I really I really do appreciate it. Hold on one second. Something new just arrived from MiniMed.
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Minimed.com/juicebox. Having an easy to use and accurate blood glucose meter is just one click away. Contournext.com/juicebox. That's right. Today's episode was sponsored by the Contour NextGen blood glucose meter.
It's the meter my daughter uses. She has it on her right now, and you're one click away from having it too. And don't forget using juice box podcast links helps support the show. Friends, my diabetes pro tip series is about cutting through the clutter of diabetes management to give you the straightforward practical insights that truly make a difference. This series is all about mastering the fundamentals, whether it's the basics of insulin, dosing adjustments, or everyday management strategies that will empower you to take control.
I am joined by Jenny Smith, who is a diabetes educator with over thirty five years of personal experience, and we break down the complex concepts into simple actionable tips. The diabetes pro tip series runs between episode one thousand and one thousand twenty five in your podcast player, where you can listen to it at juiceboxpodcast.com by going up in the menu. If this is your first time listening to the juice box podcast and you'd like to hear more, download Apple podcast or Spotify, really any audio app at all. Look for the juice box podcast and follow or subscribe. We put out new content every day that you'll enjoy.
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#1979 Five More Minutes
Five More Minutes
Julie's daughter already had an immune deficiency, a liver condition and a heart issue when type 1 arrived on a family trip overseas. A nurse later told them how close they had come.
Jump to a moment
- Type 1 arrived on top of a long list. Julie's daughter was diagnosed with an immune deficiency at ten after fourteen bouts of pneumonia before the age of four, and received regular infusions until she was four. Later came alpha-1 antitrypsin deficiency, a confusional migraine at eleven that mimicked a stroke, and a heart issue that sends her pulse past 200 within a minute of running. Autoimmune conditions cluster, and this family has seen a lot of them.
- It happened on a family trip, and the signs were there. She had just finished high school. The family's thing is travel. Julie describes a daughter who never drinks suddenly drinking constantly, and the slow realization on the way home that something was badly wrong — followed by an urgent care visit where Julie had to ask a registration desk, more than once, to just prick her finger before finishing the paperwork.
- A nurse told them how close it was. Getting to the children's floor, the head nurse asked whether anyone had told them what another five minutes would have meant. Julie is honest that she can't be certain she's remembering the exact words through the trauma of it — but the message landed, and it shapes how she talks about urgency now.
- Her daughter has very specific limits. She will wear a CGM without complaint but can barely tolerate an ordinary bug bite; she went on a pump by day four. Julie describes sitting quietly in the room for moral support without speaking or making eye contact, because that's what works. They're currently talking through whether to restart a low-dose GLP for the inflammation side of things — a conversation for their care team, not advice.
- The college piece is the part she wants changed. Julie describes resident advisors who aren't permitted to follow numbers, campuses unwilling to accept liability even when families offer to sign for it, and the patchwork of state rules governing whether EMTs can carry and give glucagon. She now spends real time helping families she has never met, including one as far away as Bahrain.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Bold Beginnings series — Scott and Jenny Smith for the newly diagnosed.
- Juicebox Podcast Facebook group — The private community, free to join.
- 504 plan builder — Free school-plan tool — useful background for the college accommodations discussed here.
Every word of the conversation
Hello, friends. Welcome back to the Juice Box podcast. Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan or becoming bold with insulin. Winter is on the way.
Cold open & sponsors0:22
Don't let it get you down. Give yourself something to look forward to. Juice Cruise twenty twenty seven is coming up in July, and you can get all the information you need at juiceboxpodcast.com/juicecruise. Come along with us on our third annual... I can't believe I'm saying third annual.
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Hi. I'm Julie. I'm Kate's mom. She was diagnosed at age 18, and I'm here to tell her story.
I am most excited for some reason today to, put right before the ad break in this episode, the Just Say Julie jingle from from MTV, which there... Do you remember that? She'd be like, just say Julie. We'll be right back. That whole thing.
I think I Go right ahead. I don't know. I think that might be wasted on anybody. I'll be the only one laughing. I'm sorry.
You said your daughter's name was Kate? Kate. Kate and Julie. Okay. Yep.
Are there kids, Julie?
Yep. An older... Two years older daughter, Madison.
Okay. And we didn't say Julie's age, but you told me earlier. It's okay to say here? I'm sorry. Kate's Kate's age.
Kate's 22, makes Madison 24. Is that about the other... The vibe? Okay. Alright.
Now we know the players. You're married? Yes. Okay. Four p...
Is there a dog? I guess I'll check real quick.
Cats. Cats. No dog. Okay. We travel way too much for a dog.
I don't wanna have to board a dog, but cats are easy.
It's a thing that you think won't be a big deal until you do it, and then one day you're like, let's go on vacation. What do we do with the dog? Right. Who's gonna feed this dinosaur in my house? Like like...
Dats are fabulous. Have somebody come every couple of days. Make sure they still have food and water. They're good to go.
Yeah. It's a it's a... To be considered for sure. Your youngest has type one. Yes.
Anything else with your oldest daughter? Does she have any struggles? No. No.
Kate has... She's our autoimmune girl. She has everything, and our oldest, nothing.
How about you and your husband? Do you have anything?
Well, they believe that I had hypogammaglobulinemia as an infant, and that's something that Kate... That was actually her first autoimmune disease that she was diagnosed with. She was diagnosed at 10 with that, but they believe that I had it too because I had pneumonia 14 times before I was four. But there was no there was no name for it back then. And you outgrow it when you get it that early.
Okay.
You outgrow it typically around age four, which both she and I did.
You're freaking me out. Is that a... Can you spell it?
Yeah. It's hypogammaglobulinemia. That's all one word.
Hypo. Gamma.
Gamma, g a m m a. Yep. Globulinemia.
Wait. Let's see how close I can do that. Do wanna spell it?
Hypogammaglobulinemia of MMC.
Chad GPD was nice enough to say, I think you're thinking of Okay. Oh, it's gonna help me say it.
It is a real thing.
An immune deficiency, diagnosed at ten5:19
It can be primary genetic or secondary to things like certain medications, blood cancers, kidney protein, losing conditions, or other illnesses. Diagnosed usually involves checking IgG, IgA, and IgM levels, sometimes followed by testing how well the person makes antibodies after vaccination. Wait.
So she was very low in IgG, and it started... About about two weeks old was her first illness. And it was just various things. It was UTIs and ear infections and hand, foot, and mouth and rhosiola and just all these things. And she was constantly having...
She she never had a high fever with any of them, just a really low grade fever. And she just was the happiest kid, always was the happiest kid. So when I would go to the doctor, well, she looks happy. And and she did, but something was going on. And the last time we went in...
And I can't remember all that she had going on, but it was at 10 old, and the doctor was just like, I can... Like, she had roseola again, and she she had the hand, foot, and mouth at that time, and maybe double ear infections. I can't remember exactly what. And we were so careful about keeping her... She was born in December.
We're so careful about keeping her away from others in the winter and all this because she's just constantly sick. Yeah. And, anyway, he sent us to an immunologist who did testing, and it came back that she was low in IgG. So for... This was ten months.
Until the age of four, she got IgG infusions, the one people donate to plasma for them, for... She did it every four weeks until she was four. And that is what, I mean, kept her alive, I'm sure. It was miserable. It was an all day infusion that we would go for.
And...
Yeah. So... And you had...
That was the start
of it. They think you had it as a baby too?
They do because they say... And this kind of plays into her next autoimmune disease too, but they, they say that it typically... The reason why that... My doctor said the reason why he didn't, like... They didn't realize it until 10 was that it usually only comes out in the form of upper respiratory infections.
I don't know about only, but typically, like, lots of upper respiratory infections. And Kate, to this day, still has not had one.
Can I read you this?
Never had.
Let me read you this little bit here. It says Okay. Hype... Oh my god. Hypogammaglobulinemia.
Here's what I'm gonna do. Ready?
Gamma globulinemia. Yep.
Okay. Is primarily an immune deficiency problem, not an autoimmune disease?
Yes. I have read that more recently.
Okay. So...
So maybe... Yeah. So maybe that isn't autoimmune. Maybe it's just immune. I'm not really sure.
I asked it. I asked my overlord before it comes and takes us. I I saw some warnings today from some AI people that were 100% gonna die. But, you know, until then, let's learn. I said, what disorders can follow this later in life?
And it said recurrent sinus and lung infections Right. Bronchiatitis, permanent wide anything. Damage the airways. That... That's a no.
Autoimmune diseases, particularly autoimmune low plate... Platelets, autoimmune hemolytic anemia, thyroiditis, rheumatoid arthritis, pernicious anemia, some other autoimmune conditions also occur more often, GI problems, inflammatory granuloma disease, jeez, lymphatic interstitial lung disease, enlarged lymph nodes, and an enlarged...
Well, thank you for this whole list. This is great.
Yeah. Sure, Joy. Just... Later the story will be like, lady makes podcast, throws herself off roof. Should I read where it says certain cancers?
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I have a little bit. Yeah. But you know what? We have so much She has so much going on.
Julie's like, listen.
That they told us she... And they won't ever say, like, oh, I'm fully in remission. But, basically, if you get it before the age of four
Yeah.
You usually outgrow it by age of four or five. If you get
it after age five, you have
it for life, and it's called something different. It's not... Because this is hypogammaglobulinemia of infancy. Right. And so then my mom, of course, at the time is like, well, you had pneumonia 14 times before you were four.
Fourteen bouts of pneumonia11:41
The doctors, like, always let us in the back door, and they would just call in prescriptions as soon as I started the little, you know, weird noise or whatever. And...
How old were you back then? When were you born?
I was born in '76.
You're lucky they didn't throw you in a river. You know what I mean? Yeah. I don't know. Crazy.
Crazy.
But back then, they just, Just quit.
Yeah. They were like... You know what? I'll quit. We'll get another one.
Right. What in the world?
Wow.
So then so then at the end of that... And and we got the antibodies or she got the... Yeah. She got the antibodies. Every time, it was from over sixty thousand people every four weeks.
And, so at the end of that, when she finally got to the point of, hey. She was going longer than a month without needing antibiotics for something or whatever, not getting sick for once, not getting a cold or whatever, our doctor was ready to, kinda dismiss us from that, but he said autoimmune because they thought... Back then, at least, said autoimmune. But he said autoimmune diseases or disorders or whatever usually, like, go together. So he tested her for a whole gamut of other autoimmune disorders, and she came back positive for alpha one antitrypsin deficiency.
And so alpha one affects the lung and... The lungs and the liver. Basically, it makes getting lung disease or liver disease way easier than the average person. So then, of course, this is another hereditary thing. So then they wanted us to...
We all got tested. And my husband and I, one of us is the carrier for the lung, and one of us is the carrier... Is a carrier for the liver. And poor Kate got both, not just as a carrier, but she has both. So...
And that was really hard to figure out back then. So she was four or five at the time, and there wasn't a lot known. We're in Michigan. We actually drove, to Chicago to speak to a specialist. And so this is what kinda ties into the upper respiratory infection.
The the doctor that we spoke with said, I really don't think she's ever gonna have issues with this. He said liver, usually, they're born jaundice and have a lot of those issues, and then later in life have liver disease. Or... And and he said, and with lung disease, your daughter should have had all of these different lung diseases with the hypogammaglobulinemia. He said, I bet she's one of these people that could smoke a pack a day and never develop lung disease.
And he said, so I really don't think you're gonna need to worry about this, but just have your doctor... Like, I didn't need to see a specialist for that.
Mhmm.
So she she gets ultrasounds on her liver every now and again, and we do tumor marker, blood blood work, and she just... She's never to this day had anything with upper respiratory. So That's crazy. So we're so we're not really worried about that one.
Yeah. Which... Does she have other issues beyond the type one today?
Yeah. She has other stuff going on too. Yeah. And the other interesting thing is this... That she gets big things.
She gets the big, you know, the big autoimmune diseases and whatever, but she doesn't get the little things. Like, everybody can have a terrible cold, and she might have it for twelve hours. Or everybody can have a terrible stomach bug, and she'll never get it. Or she'll get it... She'll throw up once or something.
Mhmm.
So I I don't know if that ties back to all the antibodies she got as a kid or if that... I don't know. It's interesting. Yeah.
It was all very... It's just hard to track. Okay.
Right.
How old was she when she got type one? 18. Eight... Oh, this is just four years ago.
Right. Right. Perfect.
So she's got other medical issues.
She's got more in between there. Yeah.
Throughout her life. Do you wanna......
She was... Yeah. At 11, she was hospitalized for what we eventually got diagnosed with a confusional migraine, but hers mimicked a stroke. And so she went by ambulance, and it was crazy. But they they ended up saying it was confusional migraines, which I know that that's not necessarily autoimmune, but there is there is some thought out there that could be an autoimmune issue.
A migraine that looked like a stroke15:55
Mhmm. Anyways, and she had another one at age 12, and then fast forward to 18, we're, yeah. That's... That was the type one. Jeez.
And for and for us, we're on... And that actually came not just type one, but also Hashimoto's. And whatever attacked her beta cells, they believe also attacked her heart. She can't... Like, when she goes to exercise, if she goes to run, within a minute, her heart rate's over 200, and she's, like, in great shape and all of this stuff.
And we have been... I thought that the accelerated heart rate like that was something to do with type type one because it came on at the exact same time. But, finally, we just now, this past spring, got a doctor who... He believes that it whatever attacked her beta cells also attacked her heart, and that's why they came on at the same time. And she's on a low dose beta blocker, which is helping somewhat so that she can exercise a little bit without being so completely uncomfortable.
But...
Oh, god. Well
Yeah. First of
I don't often find myself going, I'm sorry, but I'm so sorry. Yeah. Yeah. That's a lot to say. Is a lot.
Yeah. How does she manage the psychological side of all this?
Oh, she just likes to pretend she doesn't have it. Unfortunately, then there is... It's a lot of just, you know, I'm okay and do what I have to do, and I'm not gonna think about diabetes, and I don't wanna talk about diabetes. Because that's the biggest one. Like, Hashimoto's, they just told her...
Like, told us that she had it with the blood work, but she actually doesn't have any symptoms. We're just constantly doing blood work to monitor that and watch for symptoms, but she doesn't have to take
any medicine for that yet.
And so that... Really, the only one, that she's having to do any, thinking about, of course, is type one diabetes.
Yeah. But, I mean, the the toll of knowing that something happened to your heart is that's gotta be...
Right? Except for that, you know, we've been through all the testing. We've done all the stuff. There's no physical damage to the heart. There's nothing they can find wrong with it.
Just the racing when she
Just the race. It's it's always elevated. Like, we go on a walk, and mine will be, you know, way lower, which she's in way better shape than I am. And hers will be... Hers will hers will still be higher than it should be for sure.
But what... When it bothers her is when she she enjoys running, and she just basically can't. And she she will a little bit now because she just got on this beta blocker, and she's pretty excited when it might just barely touch 200, you know, when she runs a mile or something. And it it does it immediately, though, still. So I don't know what they'll
And a bulk of this happened as she was finishing high school?
Right. So we had just finished... She had just finished high school, and, our family's big thing is travel. Our goal was to go to all 50 states with the the four of us before both girls were in college. And it...
The trip, and a daughter who wouldn't drink19:00
So it lined up perfectly that we were gonna go to Alaska after Kate graduated college... I mean, high school, and that would be our fiftieth state together. And it was perfect because she had always wanted to been... Always had had always wanted to go. That's her...
Like, she's just the outdoorsy
Yeah.
Mountain, all that stuff, science geek person. So she was super excited to go. And so this is... So we went, and that's when she was actually diagnosed while we were on vacation in Alaska.
In Alaska?
In Alaska. Who... I mean, and they... It was crazy because it was it was after COVID, but yet they were, like, still in cove... They were behind us in how we were handling things.
And I'll start at beginning, though. She... So we're on the plane, and my girl, we always said she had the bladder of a steel trap. Like, she never used the bathroom ever since she was tiny. So she's getting up on the plane going constantly.
Mhmm.
And I'm like, what is going on with that? That's so weird. And then she is any hike we're on, her heart rate, of course, who knows if this is... It it could have been at the same time DKA, but her heart rate is crazy high. And my girl who never drinks, like, we're always like, you need you need to be drinking or you're gonna be dehydrated.
Like, it's just... She's never thirsty. It's never... She's downing my water bottle. She's downing her water.
You know? Like, she just... Every single hike. And and she's she's ornery. She's irritable.
She's never like that. And... But, you know, you have excuses for everything. Like, you just have excuses. I...
I'm thinking, like, well, she's going off to college in a few months. Of course, she's, of course, she's stressed and anxious. Like, that's, you know, that's what that is. And her senior year, before this, she had played sports all three seasons, but her senior year, she decided to not play any sports, focus on her art. So then she would say...
She's like, well, I haven't been playing... You know, I haven't been exercising like I used to. I mean, granted, she's a hundred and twenty pounds. You know? Like, it's it doesn't make sense.
It all feels excusable, though.
So... Right. So we just keep excusing all of this. And, finally, one day, we
wake in the... Let's see. Was it in the morning?
No. I think we had been out doing something that morning, hiking. Who knows what? And we came back to the hotel for a little while before we were gonna go out to dinner, and and I had talked to her. Like, I'm googling.
Right? I'm googling everything. Well, it's coming up. It's coming up diabetes. And I'm like, well, that's stupid.
My girl doesn't have diabetes. Look at her. Like, that's... She's not overweight. She's not old.
She's... You know, that... That's not it. So I... But but I'm not getting any other answers.
Right? Like, everything's coming back to that. And and so, anyway, she starts slurring her words. And and we had talked to her before. Like, Kate, you're obviously not feeling great.
Like, let's go to urgent care. No. I'm not ruining our vacation. Which her just being like that, like, snappy is not her personality.
Mhmm.
So that was weird. Like, everything was just weird about it. And finally, my husband and I were like, okay. We're we're taking her. Whether she wants to go or not, we're taking her.
And to me, I'm like, it's something to do with blood sugar, but, you know, it's gonna be an easy fix. But... So I'm like, Kate, we're going. We're going. You obviously don't feel well.
We're gonna go to urgent care. We're gonna get this fixed. We'll get on with our vacation. And so we made her even though she... And and she she...
Of course, we couldn't have made her. She's 18, but she she gave in. She's like, okay. Fine. Whatever.
But she's mad about it.
Julie, you're lovely. I I know she's 18, but, like, I... You know, you're like, did you wanna go to college? I was gonna help pay for that. So why don't we just go to urgent care?
Get get the zip ties. Okay? Yeah.
Well, if I would have realized how emergent it was, yes, it would have happened. I would... But I was...
You know, I'm not I'm not... I have no idea. Yeah. Also, can I just can I just tell people twenty minutes in how you told me you were introverted before this started?
I totally am,
though. Well, you are.
Phone right now. Like, this is easy. Oh my gosh. Yes.
You are shot out of a cannon doing such a good job of telling your story. I don't think you need me here. Like, five times a year, I get down to somebody that I think I didn't need to be here for that. And Gosh. So Oh my word.
I I am interested in... I just wanna... Right before we get you to the urgent care, which I can't I can't wait to hear about that.
Yeah. That's the story too.
Northern exposure style urgent care you were probably at with a moose wandering through it. But Right. When you have a kid, 18, who's having a medical issue, who also had headaches when they were 11 and 12 that mimicked a stroke. Have you been waiting for the other shoe to drop for six years? You have For sure.
Right? Okay.
Yeah. Okay. It's always been one thing after another, and we'd had a little space in there of nothing terrible. So, yeah, I think you're just kind of always waiting.
Can I share? I hate that so badly, that part of all this where things have been good for a while and then suddenly something reemerges or its head pops up and you go, oh, that's right. Our family has this going on.
Right.
Do you know what I mean? Right. Yeah. Like, it feels... I I I hate that.
I hate... I I hate when it feels normal for long stretches, and then suddenly it isn't. It's Right. It's a whole... You have to learn how to not get knocked over by that every time it comes up.
Anyway, that's... Obviously, I'm not gonna tell more of a story here because you're in the middle of something, and I don't need to hear a review about how I made this about me. So why don't you tell me when you get to urgent care
Okay. What happens next? So we get to urgent care, and I go up to the girl at the registry, and we start giving her info. And I said, you know, something's something's going something's going on here. I...
“Please just prick her finger”25:00
And I'd... So in my head, I'm thinking, oh, it's high blood sugar probably because of what I'm reading, but then they'll just fix it and we'll... And we'll move on. So I said I would just... I would really like to get her finger pricked and whatever.
So I'm giving her info. When I get to her age, she's like, oh, she's 18? And I said, yeah. And she said, well, then I need to be talking to her. And she's staying behind me this whole time, which she's she's way more outgoing than me, but she's mad.
She doesn't wanna be there. She doesn't wanna do anything. So the girl looks at her and says, how do you how do you feel? Kate says. I feel fine.
I'm fine. I don't need to be doing this. And I was like, oh my gosh. And so then the girl just stops registering us.
I'd be like, lady, listen. She doesn't do her own laundry. Okay? I pay for everything. Right.
Yeah. Exactly. Like...
Yes. Luckily, a nurse hears me from the back just saying, just please please prick her finger. I... Something is going on. I...
Would you please just prick her finger? That's what we're here for, and and she's she's not herself. This is not like her. And and this... So this nurse comes out and said, skip skip that.
Come in this room. So she and I... My husband's waiting in the waiting room. Our other daughter's in the car because, of course, we're on vacation, so we're all together everywhere. So we...
She and I go into this room, and I basically have to hold her down to get her finger pricked. I mean, it is so unlike her. If you knew her and the joyful, happy girl she always is and just whatever, it was crazy. So she... It it pops up 04:38, and she tells me it's 04:38.
And I was like, okay. Like, what does that mean? And she's like, oh, that's very high. Okay. So what does that mean?
And she said, it means that you don't even need to finish registering here. We're calling an ambulance, and she's going to the ER. And I was like, oh, okay. Okay?
For me
for what?
You don't need to
call an ambulance. We're... Our car is here. Our rental car is here. We will we will go.
She said, you cannot stop anywhere. You go straight to the ER. So that was our Yeah. That was our experience there.
Did she keep fighting with, like like...
No. I mean, after the... After she got it poked and whatever, she wasn't, like, fighting. I mean, she's mad, and she... Even going out to the
car, I don't wanna ruin her vacation.
I don't wanna go to the hospital. You know? This kinda... I mean, just hours
of life. Yeah. Not being reasonable.
No. In slurring words, you know, and just, I mean, just scary stuff. Wow. So... And my husband wasn't in there.
So we get in the car, we're driving. And my other daughter says, hey. I have to use the bathroom. And he says, oh, there's McDonald's right here. We could stop at on our way.
And I'm like, uh-uh. And I'm trying to not be, like, scare anybody in the car or... And Kate, I don't know how much she's even understood. So I'm like, oh, no. She said we're not allowed to stop.
She'll have to use bathroom Yeah.
At the hospital. We... US... USOBs weren't in there with me just now. This is not a thing.
Like, we're
This is not.
Yeah. Like, lot of even
have us... Right.
We're Put the windows up. Turn on the child locks, and get to the hospital before Right. Exactly. Dives out the window of the Avis rental. Okay?
Right. Yeah. Yeah.
Yeah. I got it.
My compliant girl who's so happy and how easy... Always always been my easy, you know, easygoing kid. Yeah. Crazy.
Oh, wow. That's really
sad.... Get to the ER, and I say we're here because of a high blood sugar. And the guy... Somebody comes out, pricks her finger. He says, is she type one or type two diabetic?
And I said, is that what that means? And he got this look on his face like, oh, crap. I probably shouldn't have said that. And he, like, turned and walked away, and that was my first, like, indication that Let me read she could have diabetes.
We're about to find out if she's type one or type two. Right. Sorry. Sorry. I used the wrong lead into that sentence.
I think it's it's such a common story for people who who walk into an ER usually and go like, hey. We're here because they have diabetes. And then there's that confusion because they don't realize what you're saying is I just figured out they have diabetes. So you're in a slightly different situation, obviously. Wow.
Right. Wow. Wow. Wow. Oh my gosh.
So, she did ruin the vacation. She was right about
a redo. She gets a redo. We'll talk about that later. We could
go forever college. But she was right about that, though. She was like, yeah. This is definitely gonna ruin our vacation.
But still, I don't know what's going on. I'm still assuming we're gonna bring this down. Okay.
So she has Really? Okay.
Oh, I have no idea. I don't have anyone in my family with Like,
I don't know what that means.
So I'm still thinking we're gonna get this down. We're gonna be out of here in a couple hours.
Like... You know, that kind of diabetes that kind of diabetes you just take care of in a couple hours.
But isn't it terrible that, like, so little has known about this terrible disease that nobody... Like, you know, I
mean Julia...
I'm an intelligent person.
Used to say I used to say all the time that if we made a list of all the things that none of us know about... Because I see people get upset online. They're like, well, we need to... You know, people need to understand this better. Like, people do not understand anything that is not affecting them.
And and to ask somebody to understand the entirety of the world would take their whole life and isn't reasonable. So you learn about things as you need to and, you know, here's the thing you need to learn about. So Right. It's just... I I am...
I really am desirous of knowing if the health system was up to par. Did you get good help? Like, what happened?
Well, like I said, it was, you know, two years after COVID, and they were behind. So they put her into... They took her back to the children's wing so that I could come with. My husband could not because it was only one person at a time still. And so we went to...
So... And I'm trying to... Like, I don't know what I'm doing. I'm trying to learn all this and write and texting my husband who's in the waiting room and trying to figure all this out. But, yes, they were they were really fabulous there.
They had... They were just really good good people, and they would... So we're in Anchorage, and they would... Like, even at one point, and I... While we're...
It was kind of at the beginning of it, the... An ICU doctor came in, and he's like, I just keep hearing about this girl with these levels of... Her pH levels and all this, and I... And I'm hearing that she's awake talking, and she shouldn't be, and I have to see this for myself. And, just really kind people.
Awake when she shouldn't have been31:23
And they and they broke it to me easily because I was like, you know, how long do you think we're gonna be here? And they're like, oh, well, with a with a diabetes diagnosis, this this will... This is often a few days. And I was like, what? We're on vacation.
We can't do this.
We have a...
Like, I've been so clueless.
We're riding a moose tomorrow. What are you talking about?
Just get this blood sugar down. We're gonna get out of here. You know?
I've I've only been bitten by a thousand mosquitoes so far. I need to get back outside.
Oh my gosh. So they they said, you know, she she presents as type one. We're assuming type one, but her age could be type two, but we're just... We're gonna run the test. But until then, we're gonna
Yeah.
We're gonna assume type one. And I remember there was a period of time that they couldn't give insulin until they got... Brain swelling was thrown around. All these things were thrown around, and I was just in total shock.
I was gonna say, like, how crappy is it for a doctor to basically walk in a room and go, oh my god. Is this kid alive? That's insane. Let me look. Let me look.
Right. Yeah. Yeah. And and
I just
wanna talk to her. In front of you. She's
not talking normal. She's... Her her grammar's off. She's saying weird things, but they think it's... They they don't know her.
They don't know how she normally speaks. And so they're like, she seems good to me. Is this normal? I'm like, no. That's not normal.
Like, she's... She can't even finish what she's saying.
When they get her levels straight
Yeah.
Does she have recollection of all that?
No. Not a lot.
No. Okay.
Nope. Well... Nope. And we thought we were gonna lose her at one point. They had to do a central line and...
But with ultrasound to get that in. That, she remembers like it was yesterday. She has... My poor girl who's had blood work every four months her entire life now has this extreme needle phobia
From that one moment.
Yep. From that one moment.
What do mean?
I don't even remember them using. I don't think they ended up using it.
I I have to ask you. What do you mean that you thought they were gonna lose her? Where...
They they were, some... With the brain... With brain swelling and pH levels, I can't even remember all the stuff now, but they were just talking about how they had to get that down before they could get the... Before they could start her on insulin. I don't know.
I'm sure I blocked a lot of it too. I was in this trauma.
Like, I
don't know what's going on. At one point, though... And we... It wasn't right away. It was hours after we had been there.
They came in, and her IV was working fine, but they said they needed to put this one, the central line in. Mhmm. And so, yeah, that was still affects her to this day. So she remembers that like it was yesterday.
You just made me wonder what happened to a soldier in, let's just say, I don't know, the civil war who had to have their leg knocked off with an axe after they were, like, hit with a cannonball. Like, I wonder what level of medical trauma they had going through. Yeah. Yeah. Yeah.
You know?
This is just my kid. I'm not even experiencing it myself, but I can't. And then her... In her... Yeah.
Her experience fresh for you still. Right. Yeah. For sure. Yeah.
No. No. I can I can see? And so she's... She developed pretty quickly, like, a needle phobia.
Did... Is it a thing she had prior to that?
Never. I mean, she'd gotten... Because of all of her other things that she... We kept track of, she was she was getting, through different specialists and whatever that she was going to for different autoimmune, whatever, she had... We got blood work every four months.
So she was... I remember her as a two year old going in for these IV infusions. She just sticking her little fist up there, like they always did it in her hand. She'd get that IV put in her hand. Like, it was nothing.
And now all of a sudden, my kid has this crazy xenophobia
that she's never had before. Maybe her brain just had enough. You know?
Yeah. I don't know. Yeah. She still has to fight it to this day. Like, to go for blood work, she has to...
It's it's... She powers through. But...
Yeah. I wanted to ask where does it affect her? Does it... Does she wear a pump? Yes.
CGM? Yes. Do those bother her to put on?
They did, but she learned to do it.
Okay. And so going to get a blood draw still bothers her. How about insulin needle or a pen or anything like that?
Yeah. We don't... We never have to do that. We have it all in case we ever have to, and she would...
You've never tried, though? You ever pull one out and just walk towards her to see what happens? Not the test.
That's not
how you're supposed to test that. I'm sorry.
No. No. She would... We always talk about, like, if if we... If she had to, like, first, would...
She would want me to do it. And, obviously, if I wasn't with her, she would she would figure it out. She would have to. She carries a pen as backup. Like, we...
She carries a pen. Like, if she has to, she would she would figure it out. Yeah.
Oh, you hope. Yeah. What's the, what's a what's a needle phobia look like? Like, what is that... Like like, functionally when you go
to the... Like like, when she goes to get blood work, like, will... I mean, she has to, like, make herself get in there and sit in that chair. And she wants me nearby, but at the same time, sometimes I'm too much, You know?
The central line36:24
Heart racing? Is she defensive?
Is she... Defensive? Like, she'll pull her arm away. She doesn't want anybody, like, talking, joking, anything. Like, just let me...
And she always has to have so many tubes that feels like. You know? And and then afterwards, she feels like she can feel it in her arm for a long time. I don't know. Very...
Physical pain or feeling that she described?
Yeah. Physical in her arm. Like, a feeling in her arm afterwards. Like, just that. I don't...
Arden describes Arden describes that it can feel like a lightning shooting through her.
Okay.
But we had this really interesting thing the other day. She was using an injector pen. So she was injecting a GLP. Right? Uh-huh.
So those self injector pens. And I was sitting next door just kinda like... I I I realized you must know exactly what I'm talking about. Like, you're sitting very quietly being there for moral support, but not saying anything or making eye contact. Right?
Yeah.
Trying to pretend you're not there.
Yeah. But but you're not allowed to leave, and you're also not allowed to help or talk... Yeah. Okay.
Or say one word.
Right. Yeah. It's a very interesting affliction to to be with. Arden is moving through it, and she's she's getting there. But...
So, anyway, this... I thought really interesting thing. Like, she... If she can get distracted by something else physically, it can help. And she has this...
She's going to put the GLP in her thigh and kind of on the side of her thigh on her right leg. Right? And I look and I go, you know, I can see that it's not happening. She's, like, you know, positioning and repositioning the the injector pen, like, a thousand... As if there's, like, a better place.
Do know what I mean? Right. Yeah. Is this the thing you've gone through with with yours?
Okay. Just in
the hospital, though. But...
Yeah. Okay.
So so so you're watching. It's like a squeeze. No. That's not the right place. That's not the right...
Over and over again.
It's right here.
Then all of a sudden, there's a pause. I can't do this. I'm like, you can do it. I can't. Turn up.
Don't talk to me. Blah blah. And then I noticed on the inside of her knee, there's, like, a little bug bite, like a mosquito bite or a spider bite or, like, she has a little raised, like, red thing. I said, oh, look. You have a little bug bite.
And I just scratched it a little bit. And she goes, keep scratching it. And I was like, okay. She was like, scratch it harder. And I was like, okay.
She goes, do not stop scratching it. I'm like, alright. So now I'm scratching this bug bite, and she injects the GLP. Mhmm. And it ends and she goes, that's the least painful one I've ever had.
Oh, wow.
And I thought I... It's such a interesting, like, mental physical connection. Do you know what I mean? It really is.
Yes. It really is. And I don't even know if it's the pain for her.
I I don't know. Yes. It's...
Right. It's all... Like, before before Alaska, going get blood work, we do it all the time. No problem. Put my arm up there.
Do it. Done. And now it's this... You know, I have to talk herself into it. Big thing.
And we've always done... Because she's done this her whole life. We've always done, like, a Starbucks or something afterwards. So we talk about that. You're gonna get your...
You know, we'll go wherever you wanna go and get, and we still do that to this day. Like, you gotta be treated for having to have
crappy things torn in your life. Well, you know, it's interesting because people will wonder. But Garden wears Omnipod. She wears Dexcom. Right?
Same.
Yep. Yeah. She just had any trouble putting that stuff on.
So she... Omnipod? No problem. Because you put it on from your... You click it from your phone.
Mhmm. Dexcom was so difficult because you have to physically push the button on the injector thing or whatever it's called, the applicator. Well... That was so hard for her.
Yeah. I don't... Listen. I don't say Arden loves it. She's not excited about it.
I'm sure no one who's putting on any device is excited about putting
it on.
That's not my point. But she doesn't pause. Like, she, you know, she puts her pod on. Arden, we pinch up for a pod insert, like, little pinch up, push the button.
Uh-huh.
Goes in to... Like that, and it's over. Right? Like, you don't really talk it. Sometimes you rub it out or that one really got me or something like that.
Right. No. Like, it feels like lightning. Like, nothing like that.
Right. No. Nothing like that. She does it all the time.
So I have a misstep. I don't know how long ago this was now into this whole, like, journey with the the needle phobia thing. Because Arden, like you, was... Or like your daughter, was really fine for a long time. And then one day, it just got sideways.
Yeah. And it was during the blood draw. I've described before, if she was Spider Man, she would have been on the ceiling because she backed up up onto a table and kept backing up. And if she could have stuck to the wall, she would have been gone. And and I had to take her out of the room into a bathroom, calm her down, get her ready to get this blood draw done.
I don't remember how old she was. I don't think she was a teen yet. I think she was younger. Okay. And then you didn't really notice it here and again until all of a sudden it was just like, I can't...
What she'll tolerate, and what she won't41:10
Like, one day she needed to... I I... We were in a situation. This is years ago. And I was like, hey.
Your blood sugar's not moving. I I don't know if it's the site or not. Can we just inject with a syringe to see if that works? But we hadn't given her insulin by syringe in so long. She just sort of must have forgot about them.
Because she's like, yeah. Whatever. And then I pull it out, and she goes, what's that? And I was like... And she was young, and I was like, it's the needle.
And she's like, woah. No. No. No. No.
And I was like, okay.
Doing that. We're not doing that.
So before she went to college, I said, Arden, listen. You're gonna have to practice giving yourself insulin with a needle a couple of times because you... If that comes up and you're out of state, like, you need to be able to do this. She did it one time. She disappeared in the bathroom for two hours Mhmm.
And came back out. And she's like, I did it. I was like, you did it. I thought you were dead. Like, I thought you were in there for so long.
I thought you fell in the toilet. So my grandmother would have said, did you fall in? Like, you know, like... So... And even then, I didn't realize, like, the weight of it.
But anyway, so into this process, like, just a year or two ago, I don't know what possessed me. But I said to her one time, I'm always so surprised that putting on the CGM doesn't bother you. And she goes, why? And I was like, because you can see the needle. And she goes, what?
Oh, shoot. Should I take those words back? And I was like, nothing. What? What the...
And I could even hear the voice of my own head going, yo, man. What are you doing? Yeah. Yeah. Right?
And then... But then I was like, alright. Cat's out of the bag. And I thought, well, maybe she'll realize what's going on and then see how the other thing should, like... You know?
Because the g seven, after it deploys, like, you can flip it over and you can see. You know?
Like Right.
A needle comes like, wazoom. It comes out. It hits you and leaves behind the wire and it's...... Puncture? Yeah.
And she and she looked at it, and I'm like, now my heart's in my throat because I'm like, oh my god. If we can't get the CGM on, I'm gonna I'm gonna throw myself out of a window. I'm like,
Right. I'm That's not your fault.
I'm gonna walk into my wife and go, hey. Sorry I asked you out all those years ago. I give up. I'm leaving. And, like, you know, like...
But instead, she she looked at you and goes, no. That doesn't bother me. And I was like, wait. What the hell? So no no problem at all with the CGM.
So no prob... Yeah. No problem with Kate either except for the CGM was an issue, but at the beginning, she needed... She would put it on, get it all ready. Again, we're not talking.
We're not looking. We're not whatever. And then she would be like, can you push the button? And we would push the button. And this is how it went.
And she would... But first, it would be... I mean, it would be thirty minutes of sitting there trying trying to push the button trying to push the button. Couldn't do it.
Ironically, other than this this, like, a need... Like, a physical needle that she has to control, Arden's... Even when she goes for a blood draw, she hates it. She sits down, puts her arm out, and sits there. Right.
Like... And... But... Yeah. Isn't it crazy?
I don't know. Is crazy. She tried... We tried some things to help her with it. We haven't really found anything completely valuable yet.
I would say... I'm not ready to say what I think might be working now, but but things have been better. And so I'm I'm very hopeful. We actually just had a talk before you and I started recording because I very much want her to go back to microdosing her GLP to keep coverage for the inflammation piece of the whole thing to... Like, I would I would like her to inject half of it about every four...
I'm not a doctor. This is not advice. Nothing here 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.
What I would like her to do is to inject half of it about every four or five days.
And I listened to one of the podcasts or something where you were talking about, like, possibly having those mixed in. Like, that would be such a dream come true
for us. Yeah. Yeah. Yeah.
Because because injecting herself with something like that, I I don't even know.
Yeah. Something... I I don't know if that's even feasible. Actually, I just brought that up with somebody today who was like, you should talk to my friend. He's a researcher.
He might look into that. I was like, oh, okay.
That would be... I mean, that would be amazing.
Yeah. So...
And... Think for a lot of people. Right? Like, for a ton of
type ones. I think more people struggle with this than you think. That's my expectation is that I think more people struggle with this than you think. Can you...
Which is crazy. Right? The people who deal with the needles the most out of... In life are the ones who are...
Yeah. And the and the doctors definitely don't think that because they always say the same thing. They're always like, oh, well, you're used to this. And and I'm like, that's not a thing.
No. It's it's like the opposite. Like, she did way better before this. And... Yeah.
Hey. Julie, give me one second. I'm gonna step away just for a second. I'll be right back. You...
I'll be literally back in ten seconds. Okay. My apologies. I'm in the... No worries.
I'm in the middle of moving my whole operation to somewhere else. And today, I'm in a room that... I don't even know if I wanna say this. I... I'm I'm in a room that has a small cage with, like, these little tiny lizards in them.
And and one of them didn't eat one of the crickets. And now the cricket is... It's out? It... No.
It lives in the cage now, but it's been in there for so long that it's got the wings, and the wings make the noise. So... Yuck. Yeah. So so, basically, what I just did was I just basically went over to the cage and just, like, misted it really heavy because that should keep it quiet for a little while.
But if you guys could just find the cricket needed, that'd be awesome. I... There's, like, five little velociraptors in this thing. You should see them when you... Actually, first of all, there's six of them.
I don't know why I lied. You said five. But they're the tiniest little things. But I swear to you, they are like a six inch version of a raptor from Jurassic Park. Oh, wow.
Anything they say... That they see move besides each other is dead except for this one cricket, which is living in there like... I don't know. He's he's he's in there running from him like OJ. You know what I mean?
It's like, he's just... He's... I don't know. He's just making distance. Do you think people even remember OJ?
I mean, if they're our age, they do. Right? Don't you have to?
I have to tell you. May I take a left turn for half a second? Okay. The people listening expect this to happen once. They'll be disappointed if we just hear your whole story.
Okay. And so... But I'm gonna fast forward in a second when I get back to you. I I I... I'm learning that one of the things from...
You you learn a lot as you... As you're older. Right? And as you've lived a longer and longer time. How old are you?
Mhmm. 50.
Okay. The first thing that I noticed was that, you know, the the the saying, those who don't learn from history are doomed to repeat it. Uh-huh. That saying should be, we don't learn from history. That's why we repeat it.
Because no no one really. What does that mean? Like, you... You're born and at some point, you're conscious and you see the world around you, and then this is your expectation that this is the world. And then the world shifts.
Right? Like, you you can see it happen in all different ways. Like, norms, you know, go from one side to another. I don't know if people know this, but, like, you know, the... How you would think...
What's a good example? Like, how you would think of the Republican or Democratic party right now in in in The United States. At some point in in my lifetime's history, those things were swapped. Like like, they... Basically, the things that one side found the most important shifted.
It, like, slowly went to the other side. My point is that things go back and forth, back and forth. So if you were born at one point, you would think, oh, Republicans, they mean this. And then... But if you were born twenty years later, you go, Republicans, they mean that.
Then you'll hear somebody go back when I was a kid. That that used to mean being a repub... Like, you know what mean? Like, there's... That that happened.
It happens with everything, though, and you don't realize it. And so, you know, even with, like, social stuff where people like, you know, we gotta fight against this. I'm like, yeah. I... Somebody already fought against that.
And before them, somebody else did it and some... But you're not aware of it because you didn't live through it. Right. I don't know what my point is other than to say that things really do, like, change and morph. And and as you get older, you can see it, and then it gets really frustrating that other people haven't lived through it long enough to see it.
And then when you talk about it, you sound like an old person. Right. You you sound like a guy goes, I'm... I... In my day,
and and...
But it's real. And if you're lucky enough to live long enough, you'll go, oh, yeah. Everything old is new again. It's a 100% true. Like, everything you think is happening for the first time in the world is happening for the the billionth time, and you don't realize it.
It's it's... I don't know why I started talking about that. I just know that that's the take... That should be the takeaway. Is it everything you think you know right now, you will watch go away and come back.
And Okay. I'm sorry. I don't know why you said any of that. Go Away.
Crickets. Yeah.
I mean, the cricket and the thing that vibe... It's hard to know how that happened, isn't it? Wow. How about that? Maybe I had a migraine stroke.
Who knows? By the way, first time anyone's ever said that on here. Congratulations. There should be an award for the first time anybody's ever said that. Anyway, your kid now needle issue.
It's interesting though. Like, making her way four years in using, like, stuff. Did she go to college? Yeah. She did.
Two two months later.
Two months later, she's
She hadn't even put the Dexcom on by herself at that point. Like, she still... She had still... She would sit there with it for so long and just couldn't do it and needed us to do it even up until, you know, however many days before leaving for college. And so she...
The plan was if she couldn't do it, she was gonna get it all set up and find somebody. She didn't know anybody. You know, find somebody. Can you push this button for me? Yeah.
But she ended up doing her.
How would you essence. How would you quantify how the last four years have gone?
Oh, she's amazing.
She's amazing. Diabetes.
Yeah. She's amazing. We... She got set up for success in Alaska. I mean, like, just...
Yeah. Absolutely amazing.
How did they set her up how did they set her up for success?
Well... Okay. So we got to we we got to go into the children's wing, so I was able to be with her even though she's 18. And it just so happened, like, I mean, this... Like, God just hit his hand, I feel like, in so much of this, like, all the steps.
I wouldn't have seen that she was drinking so much or going to the bathroom except for on an airplane. You know, all these things. Like, all this stuff led up to it. Being so close in proximity, like, something's wrong, all this stuff. And when we got to the Children's Floor, the the head nurse is like, did they tell you if you had waited five more minutes that she...
How close it actually was53:03
Your outcome would have been totally different? I don't I don't know why she said that to me, but that has just stuck in in my head. Like, just so thankful that we got her there in time and all of that stuff. Anyways, so another thing that was just kinda crazy is they're diabetic... There's a diabetic educator there.
So there was no endocrinologist. And I felt like they told me in all of the state, but I don't know if that even could be true or if that's just, like, my trauma remembering it that way. There definitely wasn't one at the hospital, which is a big hospital. No endocrinologist. So...
But there was a diabetic educator who worked with, a doctor out of DC, and we Zoomed with him one time. And she actually... She came back the day that Kate got moved to the Children's Floor. She came back from maternity leave, had zero appointments all day. Like, she showed up early or something, didn't have herself any appointments.
She... Her name was Olivia. I don't even know her last name. Amazing. She basically, like, lived with us, taught us...
And we had already been through, like... You know, I had learned sliding scale then. I was learning carb count and correction factor calculations and all... You know, trying to, like, going through the book with the charge nurse and doing all this stuff, trying to learn on my own and texting my husband and trying to, like, just... And Kate was a no.
I mean, she didn't wanna hear about it, plus she was just... She wasn't herself yet. Like, she just wasn't herself. She's still having grammatical errors and just not talking right. But, anyway, this Olivia was amazing.
And somebody at some point early on told us, like, you... Eventually, you'll get on a pump. I didn't know there was such a thing. I had never heard of such thing. Eventually, you'll get on a pump, and and all of this will be easier.
And I said, I want the pump right now. And I just kept saying that to everybody who came in. My insurance is amazing. My husband's public school teacher here in Michigan. Insurance, amazing.
I... We have great insurance. We want the pump. We have great insurance. I want her on the pump.
I want her on the pump. I I told everybody who who Who would listen?
The room. Yeah. We want her on the pump.
And one day, Olivia comes in and... Well, a a different volunteer came in. She's like, it's like Christmas morning. And so this is day two. She comes in with Dexcom and all the stuff, and she's like, I love it when insurance are so good, and they can provide you with all this stuff.
And she brings us all this stuff. Day four, Olivia comes in with Omnipod. I didn't I don't... I didn't know there were other pumps. I knew nothing.
Mhmm. She... Her husband is a type one diabetic. She says this is what my husband's on. She said there's a new one coming out.
This is June '22. June 25 is when she got diagnosed. She says that there's... Omnipod five is coming out. We can't get that yet here in Alaska.
And, actually, we couldn't get it in Michigan for a couple weeks or maybe even a month after we got home. But, anyways... So she's like, this is Omnipod dash. We're gonna get her set up on it. And she's like, we're...
She's going to go away to college in two months. Because we were talking... Like, we were talking... Is... Do I send her to college?
Like, how do... She's gonna be two and a half hours away from home. We don't know what we're doing here. And she's like, oh, no. She's going she's going to go to college.
Well, Kate's like, I don't wanna I don't wanna do this pre bolus and wait for my food to get cold and and, you know, all this stuff while I wanna be normal. I don't want people looking at me like, what are you doing? You know, go get your dining room food or your dining hall food and sit down like a weirdo and wait for whatever time. And so Olivia's like, oh, Lunjev. We're gonna put her on Lunjev, which burned.
So, hey, Fias. We're gonna put her on Fias. She's not gonna ever have to prebol us. Still to this day, she's never prebol us in her life.
Oh, that's cool.
And Olivia was like, you... We wanna set her up for success. What she... What what she wants to do. Is she gonna be weighing things in a dining hall?
No. So you're not gonna weigh anything. You're gonna eyeball everything. You're gonna figure it out. It's gonna be okay, but you're you're not gonna try to...
You're just gonna... So she whole plate swags always, and she's incredible at
it. Cool.
And Olivia said, we're not gonna... You know, Kate's like, well, I don't wanna... You know, like, she's always been... She loves sweets. She eats very well.
Like, she's very... You know, she loves her veggies, her salads, all that stuff, but she also loves her sweets. And she's like, you are not taking away your sweets. We're gonna take out sugar drinks, mainly pop, but... And and we're gonna take out real maple syrup, which she's added back in.
Settings, food, and getting it right57:45
But she's like, those are the those are the things we're gonna take out, and and you can do you can do everything else. And so that's that's how we started.
Yes.
So we're day four
on this pump. But you... Basically, by having luck and running into a person who is working there whose husband has type one diabetes Right? That's the launch you get. Yes.
Yeah. Just having having a knowledgeable person there to talk you through these little things.
And I didn't even know... Yeah. I knew nothing, like, until I got into your group and... Which was a couple months later or maybe a month later. I can't remember.
And that was from a different Endo told us to... But, I I found out, like, how rare it was that people are, like, saying they have to wait six months or whatever to get on a pump. I'm like, bullcrap. You don't have to do that. Just have to have to find the right people.
Right? Like, you have to find the right people to fight for it. Because clearly, I mean, we were in it on day four. I don't know what she did, but she made it happen.
And Well... And you had you had the insurance, and then you had somebody motivated to help you. And, yeah, who knows all the reasons? But, yeah, I I would say that it's a coin flip whether you get a knowledgeable person, and it's a coin flip whether you get... Like, I still...
I saw somebody arguing yesterday. You should really do MDI for six months. Like, somebody comes in and says, hey. My kid was just diagnosed. I don't know what to do.
You know, what's your best advice? And somebody goes, well, definitely learn shots and a meter. Do it for months. And I was... I actually jumped in.
I was like, look. I... Just let me be honest here. I've never held an insulin pen. I've seen one.
I've never held one. I've never used an insulin pen in my entire life. And, you know, I wish we would have gotten a pump sooner. I don't...
For sure.
You know?
I've had people I've had people in the group get... Kinda get after me a little bit about it too. But what... I'm like, my girl is stinking intelligent. She would figure it out.
Just like we had... Like, you might have to figure out a pump later. She'd figure out MDI. She would... I have no doubt.
Yeah. She gotta figure it out.
A lot of catastrophizing every question. Like, well, what would you do if it went away? I'm like, well, a, it's America. I have insurance. Like, there's a Walgreens every 45 feet.
Like, I feel like we can work it out. I... Listen. I... In that in that thread, I said, look.
It's a couple things. I think it's about understanding how insulin works. The delivery system's not all that important for taking for taking care of yourself. Right. You know, there's a lot of access.
If you have access, access is everywhere. So if, you know, if that's not a problem, then I don't think that's a concern. I've never held an insulin pen before in my entire life. And, hey, I said, let let me shock you here. We do not have a prescription on hand for long acting insulin.
Like, so... And my wife every year used to say to me, Scott, you really have to get, like, a long acting insulin script. It should be in the house. And I'm like, yeah. I don't think we need it.
And now, she's 22, and she's had diabetes since she was two. And since she moved to a pump, I've never had a script for because one... That's interesting.
Well, because... We have... We do have one, but, you know, have we ever ever ever used
it? No. Because if something goes crazy...
We take them on vacation with us.
I'll call the Endo's office and go, hey. Guess what? First time in twenty years. Like, to me, it feels the same way as, like, when my wife's like, hey. Keep that.
We might need it one day. And I'm like, throw it out. If we need it, we'll buy another one. Right. Don't remember.
Is ever coming up again....
Ever been a hoarder. But now that I have a kid with diabetes, you better believe I'm a hoarder of supplies. It's ridiculous. I definitely hoard supplies. But I...
I'm not that about anything else in my life. Like, get rid of it. Get rid of it. Get rid of it. Much more Yeah.
Minimalist, but not when it comes to diabetes.
Yeah. But I think the bigger point is that, like, it's to me... I mean, maybe you could disagree, and that's fine. To me, it's about how the insulin works and how the food impacts you. The the delivery system is secondary.
Like, are you gonna have a better... Like, listen. Is it gonna go better on, you know, a DIY app? Is it gonna go better on an algorithm you can buy from a company than if you're just randomly shooting in someone with a needle and you don't really know what you're doing? Probably.
But you're also... You'll be okay for a couple of days. Right. You know what I mean? You can keep yourself alive.
Also, you can keep yourself alive without short acting if you, you know, just inject long acting more frequently. So there's ways to cover your insulin needs for a couple hours till you can get to the the guy. You know what I mean? Like, I don't know.
Yeah. I I always am the type of person that, like, I don't want her to be anxious about this because it's... She's been more anxious since she's been diagnosed, and I want to relieve that as much as I can.
Yeah.
So I... We even have eye ports. Like, because of her needle phobia, she can do an eye port. Like, she did that in the hospital. She can do that.
So we even have those, and we take those. Or if she goes on a trip by herself or whatever, like,
she takes
that with
to Arden. I was like, Arden, why don't we just get an eye port and put it in? I was like, you're good with the the things, and we'll try it a couple of times. See what you think. And you know what?
Her response was more about the disappointment that she would have in herself for having to do that. That was interesting. Yeah. She was more like, listen. I don't I don't want that to have to be the answer to my problem.
Not that it wouldn't be or... Because it's actually a great little device. Like, you know Yeah. It is. Yeah.
It's fantastic.
Not that it wouldn't be or anything like that, but she was... She... I I felt that she was... She would have been disappointed in herself if that's how it has to end. Mhmm.
So I was like, alright. Well, here we go.
So the other thing that Olivia did to, like, keep... Get us... Launch us is she... From the very first... The beginning, we were the ones changing settings.
She was available to us twenty four seven. I don't know if I, hopefully, I wouldn't get her in trouble with that, but she was amazing. Like, we could get ahold of her literally anytime. She had a brand new baby, so she was up at all hours, and she was fantastic. But she told us at the beginning how to change settings.
So if I would text or call or whatever and, like, this is going on. Okay. What do you think you need to do? And, like... So we...
From the very first week, which was our first week of diabetes, we were doing our own settings. And I think that that just, you know, it set us up for success.
Certainly does. Yeah. Having the autonomy and the knowledge to make settings changes is, I think, one of the biggest predictors of success. So, yeah. That's awesome.
Well, this Olivia person, fantastic.
She's amazing. Amazing. And we wanted to cancel, like, the rest of our trip. We still had another... After she got out of the hospital, we still had another week in, Alaska, and the the whole team was like, nope.
You're you're enjoying our state. You're doing this. So the next day, we went on this Denali bus tour. Like, no signal, no anything. I'm terrified the whole time.
We have enough sugar to, you know Mhmm. Handle everybody if everybody had a... It was it was
all I think every one of us has been on some sort of excursion the first time where we're like, we're just gonna be normal. But the whole time you're sitting there going like, oh my god. Oh my god. This is gonna
be I'm not normal.
Yeah. Yeah. We're not normal. It's not normal. Does anybody know?
This is what's going on with my kids sitting over there. I am not... Even if it's just a car ride to the store, we have all felt like I... Listen. I've I've had that experience literally going like, well, I'm gonna go to the store and take Arden with me.
And it feels like, I don't know how am I gonna accomplish that. You you know what I mean? Like, in the very, very beginning. So... Yeah.
Listen. It's it's crazy. I... You know, it's just the opportunity to be exposed to information and quality direction. I I mean, you're...
I think you're making the point of of how valuable it's. Also, I've said expose or exposure a couple of times. We should call your episode Northern Exposure probably. Oh, perfect. Yeah.
Perfect. Is anyone gonna know that was a TV show about people living in Alaska? Probably.
Right. Right. Right. Oh, even if they don't, they probably... I mean, I don't know.
I don't know if it's worth rewatching. I'll just be honest.
No. Probably not. Yeah.
And we found out last night Arden's never seen Breaking Bad. We were all like, what? So we're trying to get her to watch that. Alright. Anything that we have not talked about, anything that you wanted to say?
Oh, gosh. There's there's a lot more. I don't know if you wanna hear it
all. No. No. Good. But I just...
Do you want to?
You're you're chatty, and so... Which is fine. It's a podcast. It's awesome. But I I don't want I don't want us to talk about one more thing and eat up all your time.
So, like, I wanna focus now on, like, what else do you wanna talk about?
Okay. When we got home, we went to an adult endo thinking that was gonna be the thing. It was the right thing to do. She was 18. It was horrible.
Two endocrinologists they left crying1:06:09
The person did not know anything about her pump and was giving us wrong information that we already knew from just being... Like, we've been... It'd been a couple weeks diagnosed at this point. And, so that was really scary adult. And I and I read things all the time now about adult windows not being great Mhmm.
Lots of times. And, yeah, we experienced that firsthand. Kate and I both left that appointment. We're not criers, and we have been since this since diagnosis, but we weren't before that. And we've just both left there crying like, how can we trust this person when she doesn't even...
Like, she doesn't even know we're pumped. She doesn't even know what's going on. And and the only thing that came out of that whole appointment was that she wanted us to go to a pump class. And this pump that we're already making all the changes, and we know what we're doing, she doesn't know what she's doing.
She's like, could you take notes and bring them back to me, please?
Right. Exactly. So I had some doctor friends. I called them. They got...
They said there's this pediatric nurse practitioner. She's amazing. She's actually in the group, and she's the one who told me about your group. So they said, you you go to Lisa. She is absolutely amazing.
So they got... We left. We were, I mean, it was, an hour and a half away. We drove straight there, and she got us in immediately. And it was, like, coming home.
It was kinda like another Olivia, very much... I mean, just fantastic. So that that... She has been great. So we've never even seen a doctor.
Like, she's only seen the nurse practitioner.
Mhmm.
And now she's waiting to... We're on a waiting list to get into. She's 22 and out of college and all that stuff. So we're actually waiting on the adult endo. She goes in November.
But anyway, so...
We have... Okay. So... We have the moment coming. Arden just made an appointment with a new endocrinologist because ours...
I I I haven't said this in a while, but it deserves to be said again. Very, very rudely decided to prioritize her own life over ours. And she and she retired and she retired. I couldn't believe it. I'm still I'm still...
Lisa actually left. She works for a pump company now too, and it's the same thing. But she was 22, like, it's time anyway.
That's fine. I literally tried to talk my lady into divorcing her husband because he because he was moving for this amazing job opportunity. I was like, you've been married for so long. You must be sick of him. Why don't you stay here and help us?
She's like, I'm gonna leave. And I was like, alright. But we we we think we have a line on somebody, and we're gonna go. But I don't know how it's gonna be. Right.
You know what mean? Like, what if I get in there? And they're like, what? What's this newfangled thing you got on you here? And they're like, oh my
Lisa always said, I'm just Kate's insulin dealer. I don't need... She's like, she's amazing. All the stuff she does is amazing. We don't...
That's all I... That's all you guys need me for. You're... I'm her insulin dealer. And I don't know.
Just her whole attitude, and Kate, like, hates doctors for good reason. Like, she's been to a million all her life, and Lisa was one that she actually didn't mind going to.
Oh, that's good.
So I'm hoping her new one is
Yeah.
Is good too.
Well, good luck. Okay. Next... Go ahead.
Our next trauma was, you know, going away to college at two months. Crazy, terrifying. I happened to meet another mom in a in a in a college transition group. Her kid was going to the same tiny little private Christian college that my girl was going to. He was gonna be a freshman.
What colleges will and won't do1:09:26
He's... He is 12 years in. He was diagnosed at seven, so I connect with this mom. It's gonna be okay. She's gonna be okay.
We go away to college. I can't believe you're not allowed to ask anybody to follow your kid or to help out or anything. Such a shocker. Like, what do you mean? My kid's going away where they know nobody, and they're gonna live hours away from home, and they're not...
Like, you're not supposed to ask an RA to follow numbers, and you're not supposed... Or to get a Sugarmate text or any... Like, just completely blown away that if we see your kid having an emergency, we'll call 911. And I'm like, well, her nasal spray is right here. Like, it's gonna
be taped
to her back. The r
a is just a crackhead kid too who, like, know Right.
Needs couple extra bucks. And, actually, her r a, she had already asked before... My girl's a rule follower, but it was before she knew that she wasn't supposed to. And the girl is already like, oh, I'd love to follow numbers. And she she actually did, and she was fantastic.
Yeah. And we didn't ever need her. But I just was so shocked at, you know, we'll call we'll call 911, and that's all. And that's, you know, like majority of schools. That's what they do.
They'll they'll call 911, and, you get an EMT that's... Or at a high enough level that they can, you know, administer glucagon because so many
That's all just
are at those That's
like lower
level states.
Is protecting against liability. That's all.
Oh, I know. Oh, I know. For sure. So... Okay.
So then six months in... Or six weeks into school, this mom that I'd connected with, I've been texting. She's like the only mom I know is at the school. She's helped me a ton. Her kid dies of a low on my daughter's college campus the other freshman....
Hell did you just drop on me? Wait. What? Yeah. Yes.
Are you serious?
I am serious. So hello trauma. We're back in the thick of it. Right? Like, she's...
They lived down in Nashville. She's driving up to this... My... To the school in Indiana, and, she's texting me and... Yeah.
Uh-huh. He died of a low in his bunk.
That's insane.
Jeez. In the middle of the day. Yeah. He's an athlete. He's...
And it's like if somebody on that campus... Like, she's getting alarms five hours away. Mhmm. What's... What good is that?
You know? Wow. Like, what good is that? She call... She does everything she's supposed to do.
She calls and campus security gets there in time, and, actually, they're yelling out his name as they're coming in to do a well check. And type one, an older kiddo down the hall, hears him, comes running because he knows he's diabetic and, like, what... What's going on? And they are able to get a pulse back. But...
I mean, that's how, like, that's how close he was to being able to be saved, but he became an own... Organ donor.
That's ins... Oh, it's terrible.
Insane. Yeah. Insane. I mean, just traumatic and heartbreak and and all the why us? Like, my girl's been diagnosed at this point three months.
This kid's 12 years. He handles it... You know, he's on a pint... Pump. He handles it beautifully.
He's a college athlete. Like, he knows what he's doing.
Probably just got too active, came back and fell asleep or something like that. You know, something so simple. Ugh.
Crazy. Yeah. Crazy. So a year after his death, I started a group online. I call it ACT on college campuses, like advocating change for type one diabetes on college campuses.
Got a few thousand in there. Got some great people, Jody and Roz, working alongside of me. Like, we can't get anywhere. Everything is liability. Like, you cannot.
I just don't understand it how you expect these freshmen to go away to college knowing no one without any support. Like, get even... There's so many great kids that would love to volunteer. My girl's school came around her in the other diabetics on campus, like like nobody's business. Like, my girl had so many people following her, getting Sugarmate text, everybody wanting to be...
After after he... After Connor passed away, they wanted they wanted to support her, which is awesome, but it just tells me, like, these kids, they would have done this before. Mhmm. Like, they would do... People are awesome.
College kids are... They're awesome. They're they're just at such a great age, I feel like, to learn about type one diabetes and to learn, hey. You could help save a life by knowing how to do this nasal spray or by... You know, like, I don't know.
I just wish that there was something we could do for these freshmen before they build their own community. Six weeks in, you know, you don't you don't know anybody well enough to ask, hey. Would you follow me? Like, it's just awkward at that age. They wanna be typical.
You don't know if they're gonna be, like, valuable in the moment and things like that. Like, Arden had, you know, three, like, lifelong terrific friends. And, you know, after her high school prom, Arden had a seizure. And the... All the girls were here together.
We weren't here. It's a story I've told before. But, like, point is is that, like, you know, I was able to wake up those other girls in the middle of it and it was kind of fascinating. There were three of them and one of them was the action taker. And one of them kinda froze, and one of them wasn't as helpful as I would have imagined they would have been.
It was just kind of interesting to see, like, what happens when the rubber meets the road kind of situation. Right? So you don't really know who's who. And not... I guess not...
Unironically, the girl who reacted the best eventually went to college is becoming an RN.
Oh,
wow. But point is is that, like... You know what I mean? Like, you you can set up delegates when when when stuff goes wrong, you don't know... You know what they say?
Like, when the bullets start flying, then you find out who's who. Right? Like... So... And you don't know who that is ahead of
time. Right. But... But we can't even get those...
Oh, no. You're not even... No. Like... And...
With liability... Even though... Even if they have nothing to do with it, and they just ask, would you be willing to volunteer? You know, like, that puts them at liability. I hate I hate that word so much.
Yeah. Well, because at some point, some person's gonna have a poor outcome and then go, well,
who
who can I blame for this?
Right.
You know? And then that's... That's what they're gonna avoid. So...
So we've created a lot of awareness. Like, we've definitely been in touch with, like, the National EMS. Of course, they can't make a decision on letting, all levels of EMTs be trained in glucagon because that's a state decision, but they have a scope of practice that we have petitioned to get put in, that glucagon be trained at all levels. We've we've talked with Red Cross. We we...
Baqsimi was great. Like, they they would love to... They would have loved to have worked with us if we could have ever, like, gotten somewhere with this. We... They had us send a representative from our group down to Friends for Life in June '24.
Like, I mean, we've got we've got a lot of awareness, but everything is just liability, liability, liability, and it's
And it got changed. It's not gonna change anytime soon.
So I know.
Yeah.
Those poor freshmen, though, just for, you know, a couple months. Gosh.
Well, you... Till they get their community. You know, it's funny because within your story, the point is made. Right? Like, you're you're...
Somebody says, oh, she's 18. Like, I have to talk to her now. Like, she's 18. She didn't know what she's doing.
Right.
You you you know what I mean? Like... And they'll say that then. Well, they're they're at school. They're 18.
They know what they're doing. I'm like, no. They don't. You're out of your mind. Like, you know, do you have any idea how many times my...
My daughter's 22 now. Half the time what I get from her is, dad, I'm an adult. I'm an adult. Till something really gets sideways. She's like, daddy?
And I'm like, yeah. Yeah. Okay. Because she's still she's still young. I'm not saying she's not out learning or growing or that she's not capable.
But once in a while, in these really tough situations, you might need somebody to turn to. And, you know, when you turn and no one's there, it can be over... Again, you don't know who you are till the bullets start flying. So Right. Like, you know, some kids, you know, get it together faster, some slower, some need help, some never do.
I I don't know. To blanket just say, well, they're 18. They're at school now. They're adults is such a cop out that every college gets behind. And not just about health stuff, by the way.
They do it about everything. I'd like to know my kids' grades. I'm not allowed to tell you that. Yeah. I mean, I'm paying for it.
You you know what mean? Like Right. What do you mean? It's all just so that they just wanna stay out of any kind of legal entanglements about anything. And I don't know that I blame them.
I just... It's frustrating on this side of it.
I know. It it... It's like even even on our college campus where they really did want to help and whatever, and we're like, oh, we would sign whatever liability for us. Like, we're... You know, it just...
No. You... They just... They can't.
Yeah.
Or their lawyers don't let them or whatever. You know what I mean? It's it's just... No. It's just liability and
What else what else you got? Also, we're
gonna have put
we're gonna have to put a warning in this one. I don't usually I don't usually do that. Sorry. You know, you just drop that like a...
I know. I know. Well, I thought we'd get to that way sooner, but then
we ended up talking about our diagnosis way longer than I thought. Oh, you're chatty as hell, Julie. I don't know if you realize that or not. I love... By the way, I would love...
The
one on one, I'm great. Don't put me in front of a group, which I think I was feeling before. So I was like, ah, because it's... How many people are gonna be listening? But...
I'm introverted.... Someone.
I am. Anybody who knows me knows how introverted
I am. You've made that up. Alright.
Go ahead. Keep going.... Trauma. I had a girlfriend who was a therapist and is like, let me sit with you in your grief, and she was amazing. And she did exactly that, and I would go and cry and all the stuff.
And she would help me put it all back together. And then the other way that really helped me with my trauma is helping people in your group. People like Andrew who first brought it up, he kept saying to me, I need to be on the podcast, and he talked... He he talked to you about my nerdy math and helping his his daughter.
Helping people she has never met1:19:31
And
Fatima from Bahrain, like, she's a good friend of mine now, which is just kinda crazy, but I helped her son. And I've helped just a bunch of people get their settings dialed in on o p five and auto because it's what I know. Do I know manual? Nope. Do I know any other pump?
Nope. But if you're on o p five and auto, like, I figured out how... My daughter doesn't wanna think about diabetes. She doesn't wanna look at numbers. She doesn't wanna babysit numbers.
Mhmm. So we had to get it all dialed in. So her, carb ratios are, you know, to the nearest decimal point, which nobody ever knows that you can do decimal points.
Mhmm.
And that's always the biggest thing I think they take away. But, I follow... I followed, I don't even know, countless people. Not that I've ever asked anybody, but some people will be like, can you follow me for a little while and help me, like, figure out where I need to make adjustments? Or they just send me screenshots, or I'm following another girl.
Never met her in person. Right now, I've
been following her for a year and a
half trying to help her get her stuff. You know?
Truly, that's lovely.
That's my that's my way of healing. Right? Like, I'm giving back and and wanting to wanting to help in in that way. And...
I'm gonna take credit for that, by the way. I I mean, I made the group. I did...
You did make the group.
Yeah. No. No. I... It's your work.
Yeah. It's your work, but I'll take credit for it.
You take credit for it.
And then
the other thing about the group, though, that is, like, I met a friend who was going through the exact same thing. So Kate was in June. He was in November. Both of them were freshmen in college. And I met her in December in the group, and she...
I call her Albuquerque Amy. She lives down New Mexico. I'm in Michigan. Like, there's so many reasons why our friendship shouldn't work, but she's still the person four years later that I text most. Is it about diabetes most of the time?
Nope. Not anymore.
We have friends.
Yeah. It is about diabetes, you better believe she's the first person I go to. And just having that community of people in your group that you... That understand where you're coming... Like, they truly get it.
Yeah.
It's... And if you can talk one on one and find one on one somebody, that... Like, that has been just huge for me in my in my healing.
We struggle with this, like, managing the group. I do. And I I hope the people who help me are listening to this right now because we don't want people to DM each other because because of scamming. Mhmm. But if that wasn't a thing to be concerned about, I wouldn't care about that.
I mean, a lifeline.
Yeah.
A lifeline. Yeah. I don't know what I would have done without her without... And I knew that. And I'm not a rule breaker ever, But I I I knew that was your rule, and I still DM'd her.
And I and I, by the way......
Go through the same thing.
I'm not mad. Like, do know what I mean? Like, I... Listen. I delete things a lot that are for rules that as I'm deleting them secret time, I don't actually care about.
Yeah. It's just... It's a bigger picture thing. It's almost like... I don't know.
Do you ever you ever seen this?...
Can't match everybody up.
Though. I know.
I know.... Be such a huge thing for people. If if there was nothing else I got out of your group, having her
amazing.... Like a diabetes Tinder thing where you could meet friends?
Yes. Exactly. If if you're the diabetic, you meet another diabetic. If you're the mom of a... I mean...
Alright. I'm gonna tell you something. I have no idea if this is doable, but let me put it on my long term goals list. I'm just gonna write Tinder
for for sure. Like, if I had not met her, I don't know. I have no idea. I'd be in my grief still for sure.
I'd be... Because I don't... There's gotta be a way to take it, like, out of there because they... You don't want people getting scammed. Like, look.
In the end, it's not my fault. If you get scammed on Facebook, it's got nothing to do with me. But I don't wanna I don't wanna be the one who makes it easy for people.
Right.
You know what I mean? So you have a rule. You can't DM people. Like, you have to, like, respect people's privacy, like, that kind of stuff. Having said that, I see people being helped all the time and making friends like this, and I'm happy about it.
It's the same thing when, like, people are like, you know, hey. I have some insulin I wanna give to somebody, and I have to go, I'm sorry. Facebook doesn't allow that. And then I take it out, but, like, meanwhile, I'm oh god. I hope you find somebody to give that
insulin to. I hope that somebody gives it to you. Yeah.
Don't... Like, I wouldn't pass... I couldn't get... You know, when people start going, like, I wanna sell my stuff for something, I'm like, you definitely can't do that. Right.
But, you know, there's there's a lot of value in there. So you don't look the other way, but sometimes you just slow walk deleting something. You know what I mean?
Like, right.
I'll delete that in an hour. You you know what I mean? Like like
Make sure they get the help they need, and then we're getting rid of that
because it's against the
rules. Rules.
Right. You know, like that kind of thing. I'm much more worried, be perfectly honest, with something called follow farming that we definitely don't want to to let happen where people are trying to start their own digital kingdom and they think, oh, let me let me come steal these people out of here. Like, you know... Yeah.
So that's a real... And not because I don't... I'm scared to lose the people. That's not why. It's because most of those people will then monetize the people that they take out of there or something.
Actually, side note, but I actually had that happen. A bigger a bigger group that if I said the name, you would know them. They... When I first started the group for college campuses, they got in contact with me, and I thought it was great. It's a bigger name.
They're gonna help me out. No. They they wanted my people, and they wanted me to advertise. It was really a bizarre. It was a very bizarre conversation.
I went into the Zoom meeting super excited and came away like, what just happened? It was so weird.
I... That you just said there was a... So I... When you said if I said the name, I'd know it, I don't know that that's true. I pay very little attention to what's going on in the diabetes community, very much very much on purpose.
But at the same time, to hear you say there was a meeting, and then when you got there, what you learned was they were trying to grow their Facebook group off your ass, that part doesn't surprise me at all. Everyone is a scumbag.
A... But it's like a well known organization.
I don't care.
Like, I was just shocked. I was shocked.
People...
But that... Then I learned early, like, you just have to be careful.
I will not go down this rabbit hole today. Okay? But the the desperation that social media is causing in people is the reason that I need more clicks. I need more followers. I need more people.
Like, this thing is rampant. It's... I... I'll I'll say it again and again, and I I swear to you, I am being a 100% honest with you. I do not want your money.
I am not trying to sell anything to you. You wanna come on the cruise? Come on the cruise. Cruise doesn't make any money for me. It's a...
It's barely a breakeven, to be perfectly honest with you. Okay? Like... But I... That's a thing that I think is nice for people that can afford it that want to do it.
It is not a thing that enriches me. And nothing that I pay my electric bill with or put money in my savings account with or anything else comes from the people listening to this podcast or the people in that group. I am very proud of that. I do not I I will fight this as long as I can the way this... The way the Internet works right now.
I will fight against it for as long as I can. Everyone else has pinched their nose and dove in with two feet. And you are just something they are gonna they are gonna get together in their group so they can tell somebody we have this many people. We have this many clicks. Give me money.
So you're being sold to everybody. Just just so you know. It's a really... It's a... And I
had people mad that we as parents were... Because it's a lot of... I have type one diabetics in there too and college students, but a lot of parents wanting to do... You know? And they...
The kids need to be the one to do it. But, you know, and there's groups out there for college kids, and there are, but I can... I can't tell you anybody that I've talked to personally who were... Whose kid would join one of those groups. My daughter certainly wouldn't.
No. The She wants
to be normal. The kids
need to do it. The... Listen. Everybody's different. The way people do things is different.
Don't... This running around telling everybody, well, it should be like this. It should be like that. Everyone says the opposite of whatever they see. I saw a woman the other day say, I'm so excited.
My... You know, there's a post about Dexcom g seven. I got a bunch of people together talking about Dexcom g seven and g eight coming out. This woman's like, I'm... I love g seven.
It's always within 20 points for me. And then it doesn't take five seconds for some guy to go, that's horrible. 20 points off. And I'm like, how do you know we're meters right? Like like, what are you saying?
Like, don't always... The the... Do I wish the CGMs were perfect? I do. They're little plastic things.
They're not $20,000 meters in the hospital. Okay? Like, they're little plastic things that's... That are reading the interstitial fluid under your skin. Just be happy.
Okay? Like, it it works as well.
Saves you some pokes. Right?
Like, it saves you some pokes. But my point is is that whatever you say positive, someone's gonna say the opposite negative.
Right. For sure.
And if the answer is kids need help when they go to college, then someone's gonna go, you need to learn how to do this on your own. If you said, you need to learn how to do this on your own, somebody would say, kids need help when they go to college. Right. For sure. Everyone's just wants to take the thing they think they know is true and then disagree with anybody who's not saying it.
Like, I understand how it all works. But, like...
Yeah. And like I said before, I've had people... You know, when I talk about my daughter going on a pump on day four, oh, she should have been MDI for a while first. It's like, oh my gosh.
Yeah. You you did the opposite of what I did, so it's wrong.
Right.
Yeah. Or I have a problem with something. You're definitely gonna have a problem with it too. That's not necessarily true, by the way. Right.
Yeah. There's a difference between sharing your experience and wanting everybody to believe that your experience is a reality for everybody, which is not nearly the case. Alright. Anything else on this list? Because we're getting a little long here.
One last thing. I'm just gonna talk about my amazing daughter. So she traveled to Greece and Italy one and a half years after diagnosis with a college class and rocked it. We learned quickly that foods hit very different, and and their sugars aren't our sugars. And so there was a learning curve there, but she did so good, and she was only 0.5 in.
Good for her.
And then she went, summer of, '25. So last summer, she went, on an eighteen day engineering mission to Kenya, with some other engineering students, and totally rocked it. And she... And now she graduated in May. She's a mechanical engineer.
She's in the aerospace in... Industry. She got her dream job. She is a rock star. Her last couple years...
I mean, her a one c's been... I know that that doesn't have to mean anything, but her a one c's 5.0 to 5.3 the last couple of years and ninety five to 96% in range. I mean, she's, like, she's just a complete rock star, and I'm so proud of her. So...
Well, first of all, kudos to her and you for raising her, and I'm sure that husband did something, but it doesn't sound like much. And and... But but Omnipod five, FIASP in Omnipod five, a five a one c without pre bolusing?
Yep. Never once in her little life. Even when she could, and I see her sometimes that they're like, dude, the food's on your plate. Just do it, but she won't
until she starts me two things. Does she have a certain way of eating? Is this a very low carb lifestyle she's having?
Not at all. It's absolutely everything.
What's the secret, Julie?
The secret is dialing in those carb ratios. Her carb rate... So we use four different ones. They re... They range from...
Yes. She's resistant. They range from 2.2 to four are her carb ratios. So breakfast is 3.5. Her lunch is 2.2.
Her lunch is her most resistant time. You
said she's a small... Like, a smaller person. Right? You said? Yeah.
Uh-huh. May I say, again, not a doctor, not advice. I think GLP would cut her insulin needs down significantly.
Yeah. I think so too. But how in the world are we gonna ever get
her out of the bus?... Zip ties back out from Alaska. Bang. You hit her in the ass with it. Boom.
Just like that. I think that's illegal. But, I mean...
Will she ever even... I don't know if he'll get a doctor that would prescribe it for her. Oh, please. You can
get that per... That... Just ask for a dual diagnosis in type one diabetes insulin resistance.
Yeah. Hopefully, her new... We don't know this new doctor. Hopefully, she'll be great about it. I have wondered about that.
I think...... Not with the car brace... That car brace tells me everything I need to know.
I know. Yeah. Yeah. Yeah. I know.
Oh.
I know. But she still has
that a one c. Right? Like, so that's...
That's awesome. She's... Are you kidding me? Yeah. Fantastic.
She does great. Her graphs are amazing. She has great control, and and she's just... She doesn't wanna look at numbers. She doesn't wanna focus on it, but she knows things.
Like, if she hears her pump click three times, she knows she's getting a little more basal than usual. So she goes in because she's very, very bolus heavy. So she will go in and
Take a look.
Correct whatever needs to, yeah, whatever needs to be because there's... But she doesn't... Otherwise, she waits for her alarms at one eighty and seventy. Like, she doesn't look at it. But that's why we had to have those, the ratios dialed in so much.
So that's what I
help people with.
Does not sound like she'd be interested, but if she ever wants to come on and be on the podcast, I'd be interested in talking to her. And probably not about the diabetes management stuff, but just the other stuff. And, second thing is you're awesome for knowing how to do that for helping other people. You're awesome for sharing it here. So is what you're telling me, it's all settings and understanding the impact of your food?
It's... Yeah. It's all carb ratios. That's all it is. It's just carb ratios and auto.
We only run-in auto, never once flip it to manual. She doesn't wanna think about it. She doesn't wanna deal with it. She doesn't want to have anything to do with it. So I've helped set her up for success to not have to think about it.
Settings. Settings. Settings. People can listen or they can't. It's fine with me, but, it's...
Most of this is settings. So Yeah. Yeah. Okay. Well, I mean, also, Omnibod must be thrilled right now.
They're probably like, oh my god. Okay. All we hear from people is complaining.
Listen. If they wanna pay me, they can pay me. You know how people I've have?
Every pump company just hears complaints, by the way. I I shouldn't put it right on them. They don't hear any of the good stuff. They only hear the, like, it doesn't work. I...
I'm
That's probably true. I've never told them how amazing it works for her.
Yeah. Hello? I just wanted to call and let you know how great everything's going. Right. Yeah.
Things don't work that way. Alright. So I'm gonna say goodbye. This was awesome. You were excellent.
I have a question to ask you afterwards. Okay. But I'm gonna do this really fun thing right here. I'm gonna say, tell me the name of the Facebook group that did that to you. Today's show is sponsored by Tandem Diabetes Care, the Eversense three sixty five, and Touched by Type one, who you can learn more about on Facebook, Instagram, and at touchedbytype1.org.
Head now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system. I'd like to thank the Eversense three sixty five for sponsoring this episode of the juice box podcast. And remind you, if you want the only sensor that gets inserted once a year and not every fourteen days, you want the Eversense CGM. Eversense c g m dot com slash juice box.
One year, one c g m. If you or a loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the bold beginnings series on the juice box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one.
You can start your journey informed and empowered with the juice box podcast. The bold beginning series and all collections in the juice box podcast are available in your audio app and at juiceboxpodcast.com up in the menu. Thank you so much for listening. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple podcast, please do that now. Just hitting follow or subscribe really helps the show.
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#1977 Animating Type One for Neurodivergent Kids
Animating Type One for Neurodivergent Kids
Radhika is a pediatric endocrinologist. Molly is the mother of a neurodivergent daughter with type 1. Together they are building animated diabetes education for people the usual materials were never made for.
Jump to a moment
- It started because the materials didn't exist. Molly's daughter learns visually, and when she went looking for a comprehensive library of diabetes videos she couldn't find one. Radhika, a pediatric endocrinologist, was introduced to her as an out-of-the-box thinker. What they found when they priced it out: companies that make explainer videos for clinical trials wanted around fifteen thousand dollars for five minutes — and would keep the copyright.
- So they built it themselves, largely on donated time. A bilingual educator offered to do the Spanish work on her own time for no money, and another educator at a local hospital donated as well. One stood in front of a blue screen and interpreted an entire series. Their Spanish Instagram grew faster than the English one, which tells its own story about who isn't being served.
- The audience is neurodivergent people with type 1 — and the messaging is the hard part. Radhika is candid that the neurodivergent community didn't initially think the videos were for them, because they're used to assuming everything is made for neurotypical people. Both Scott and Molly land on the same point from different directions: material designed for people who need things explained clearly tends to be better for everyone.
- What's actually in it. Topics most education skips — interoception, how a low feels before you can name it, and a playlist on mental health and exercise built with Ginger Vieira. Their stated ambition is to become something like the Khan Academy of type 1, with a free, browsable library rather than a handful of scattered clips.
- They're looking for two things. Adults who are neurodivergent and have type 1, or families of neurodivergent children with type 1, to take part in a focus group. And funding — they have tax returns and impact reports ready, and they're clear that volunteers can only carry it so far. Scott spends the back half talking through how to get the message in front of the right people.
- AnimaT1D — Radhika and Molly's nonprofit — free animated type 1 education, including Spanish-language versions.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Bold Beginnings series — The newly diagnosed series — the one an educator interpreted into Spanish on her own time.
Every word of the conversation
Hello, friends, and welcome back to the juice box podcast. On today's episode of the podcast, there will be nothing that you should take as advice, medical or otherwise. So please please consult a physician before making any changes to your health care plan or becoming bold with insulin. Watch this three things fast. Juiceboxpodcast.com/juicecruise.
Cold open & sponsors0:26
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T1dexchange.org/juicebox. Complete the survey. Check out juiceboxpodcast.com and follow, of course, probably just one second, buddy. Follow, of course, on Instagram, YouTube, TikTok, wherever you get your socials from. And...
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Don't forget to follow in your audio app. I've got two OG sponsors for you today, Omnipod five and Dexcom. That's right. The episode that you're about to enjoy was brought to you today by Dexcom and the Dexcom g seven, the same CGM that my daughter wears. You can learn more and get started today with my link, dexcom.com/juicebox.
And this little slice of podcasting perfection is also brought to you today by the Omnipod five. The Omnipod five is a tube free automated insulin delivery system that has 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. You can learn more and get started today at my link omnipod.com/juicebox. At that link, you can get yourself a free starter kit right now. What did I just say?
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Hi. My name is doctor Radhika Purushottaman. I'm a pediatric endocrinologist and cofounder of the nonprofit Anima t one d.
An endocrinologist and a mom2:11
Hi. I'm Molly Barry, and I'm a speech language pathologist and mother to a daughter who is autistic and has type one.
It's nice to meet you both.
Nice to meet you.
Where do I find both of you? You're obviously in your homes, but you're not together. Mm-mm. Radhika?
I'm in Portland, Oregon.
Okay. And Molly?
And I'm an hour and a half south in Eugene, Oregon. Okay.
How did you meet each other?
Would you believe it if we say online?
It's the only way people meet each other. So sure. I believe that completely. Wrapped around...
Women in our fifties, it's not anything like what it sounds like.
We were lonely, Scott. Just lonely. That's all. So
the short version. So Molly's daughter is seen by one of my partners in the clinic. She, enduring one of her visits, approached him and said, you know, my soon to be adult daughter who's, high functioning autistic and has type one does not really have educational materials that would make her independent. What do I do? Where do I go?
And my partner knows to me... Knows me to be an out of box thinker, and he said, let me hook you up with just the right person. And that's how we met. Molly and I had all bunch of phone conversations first. So we're not...
We don't even... We didn't even know what the other person looks like. So phone calls and eventually a couple of Zoom meetings later, that's when the whole... The seed for the nonprofit started. So that's how we met.
We didn't know each other before this.
Molly, what what were you trying to solve for? What was going on?
I think the... My daughter was 16, 17. And as a parent of... Instead of special needs, unique unique needs, you always think, what if when I'm not here, then what?
Yeah.
And so she was approaching the 18 year old age. I was thinking, how in the world will she be... I use the word interdependent. I don't think she'll ever be fully independent with her type one. And I went online, did Google searches, and I just...
Looking for videos that didn't exist4:26
I couldn't find a comprehensive, you know, library of videos or visual education, and she learns best visually. So that's when I asked Radhika's colleague, and I said, I can't find this anywhere. And he said, well, you do it. So... Okay.
What are you? Busy?
Yeah. So I... Anything to help her visual comprehensive. Like, there's videos here and there Mhmm. But there wasn't something like I go to your podcast and you...
You're you're comprehensive in your information, and it's auditory. Right? So what is there in video format or visual breaking down, you know, complex medical...
Ideas. Yeah. Wait. Listen. I feel for you because I have two children.
They're 26 and 22 now. But when they were little and, you know, we had them, you know, one of the things you do as an adult is, like, make a, like, a will and who's gonna... Like, you know, the car goes off the road. Who's taking the kids kind of thing? We looked very hard at our extended family.
My wife and I are like, I don't think there's anyone to leave them to. So we... We're like, do we take them with us? I was like, I don't think that's how it works. So...
But it it is, like, a frightening idea of, like, what happens when I'm not here. Yeah. You know? And how do you prepare them for get... You know, as best as possible?
I mean, it's gotta be insane for people going through what you're going through. So, Radhika, when when she contacts you, are you like, I have a perfect idea or do you have to go back and forth for a while until you land on what you landed on?
Oh, we went back and forth. So usually, my approach to any problem, smaller or big is never... I I don't know what to do or I... That's not my problem or I can't help you. That's probably why my colleague connected Molly with me.
Mhmm. So one of the first thing I wanted to do is we got on the phone, asked Molly what did she want. And one of the questions I asked her is, if money resources were not an issue, if everything you wished for you had at your feet, what would that look like? So that gave me a good idea of what it is that would help Molly's daughter. And once I had that framework, with Molly's permission, I said, do you care if I start asking around people?
And she said, no. Please go ahead. She didn't feel possessive about the idea or that she wanted to keep it to herself. So I just started emailing. I didn't have any moment like this is where we need to go.
Emailing every institution she could find6:52
So I just started emailing all kinds of institutions, big and small, tall words, like, you know, the powers that be in the type one diabetes world. Almost like cold emailing when you want an internship. So there are a lot of emails I didn't get replies to. Some of them did and acknowledged that, you know, type one diabetes for neurodivergent population is a space that has been missed. It is important.
It is needed. Good luck to you.
Yeah.
Like, okay.
Thanks. No checks. Was there a check-in that note? No. There was not, Molly.
There was an invisible paragraph. So obviously a lot in between the lines that we could figure out. So Yeah. Then we said, okay. This kept coming back to visual stories and animation.
So we said, why don't we call, you know, touch base with a medical animator? So there were those companies that create small videos for clinical trials and, you know, explaining complex concepts, but in the context of institutions. So we reached out to one, had a meeting with them, on a cold November morning. So... And they were very impressed and interested in our idea, but they were charging crazy amounts of money.
I think, like, $15,000 for a five minute video and they would keep the copyrights.
So... Oh, for that... Molly, for that money, you could just pay somebody to live with your daughter after you're gone. Mean... No.
Seriously. Yeah.
Yeah. It was eye opening. Yeah.
For sure. I I... Listen. I I I certainly don't want to hear a review online about how I made this about me, so I'll try to be brief. But I've...
By the way, for those of you who feel that way, it's a podcast. If I just sat here, they'd just be talking into a recorder. So I I I go through this all the time. Like, to your point, you know, we made pro tips, then bold beginnings, and defining diabetes, and defining thyroid. And then I went to small sips because people are like, that's...
Some people would say, forty five minutes is so long. I'm like, well, you're trying to learn about diabetes. It's probably not gonna take a second, but... Okay. And I distilled it down and down and down and down until it was ten minutes worth of conversation.
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We're gonna get back to the show. So I figure I've got everyone covered on audio, and then I've had this thought too. Like, well, what if I animated it or, you know, or even in the... I see you. I'm on your website.
It seems to me like you have Spanish videos as well. I spent the last ten years having conversations with people. Like, could we just dub the... You know, before AI, like, what would that look like to hire two voice actors to reenact an episode because you have to keep it, like, human. It can't just be read back and forth.
And then somebody would say, oh, well, we can do it for this much a minute. And I was like, I don't know who you think is gonna pay for that. And then and then after that, like, I can't QC it because I don't speak Spanish. And so, like... So then there's this great idea that would really help people.
You just... I just... I set it down. I was like, can't do that then. And you...
It's... You're left with, alright. I'll put the transcripts online, and you could use Chrome maybe to translate the transcript for yourself, and that keeps me out of the trans... The translation process. It's so much of that crap that I'm sure you guys run into all the time because what I...
Fifteen thousand dollars for five minutes12:15
In my heart, I just wanna be like, look. Here it is. You know, it's on you, but I hope it helps you. I don't know how you got through all this. This...
Is it just the two of you, or did you bring in more suckers to help?
More more volunteers.
Oh, volunteers. Sure. Got it.
We use the word volunteers. So so how that process ended is I went on one of those DIY animation websites, and I made the first video myself. Yeah. So all the videos are scripted and created by me. So what we ended up doing for the Spanish videos is we were at a conference.
Oh, alright. What was it, Molly? ADC. Yes. Yeah.
Pacific Northwest chapter. Mhmm. So that was in October 2024. One of the clinics came up and they said, hey. We have a very, very passionate bilingual educator who really is invested in the Spanish speaking population.
Why don't you reach out to her? She may be interested in translating. So we reached out and I told her, like, because I have full reign on these videos, we can go back and change all the characters to Spanish speaking, Spanish looking characters. So... And give them appropriate names and appropriate surroundings and change the context to be culturally appropriate so they're not...
It doesn't look like it's just a dubbed door voice over.
The educator who said she'd do it for free13:42
Right.
And I was shocked that she said she'll do it on her own time but for no money. Now I am beginner Spanish, so I was I was able to change the characters, change the script, clean up the grammar a little bit, and then send it to her. Mhmm. So she didn't have to start from an English script. She started from the Spanish script.
And then she... And I would tell her, like, I'm just a beginner. She said, yep. I can tell. So...
But she said it was still enough. So she's not going and changing dialogue by dialogue. And then she would send it back. Obviously, we didn't give her... Give them a timeline, and she was still giving it back in two, three weeks.
And then we found another educator in a local hospital who's also donate... Donating her time. So between the two of them... So we had now this process where I would take the video, almost reverse engineer it in Spanish, and then put it back up. So it was vetted in that there was a QC process, and that's how the whole Spanish channel came to be.
How do you get it to people? Because I have... I... Maybe... God.
I don't know how long it's been now. Maybe two years ago, I had... You know, I complained while I'm making the podcast. Like, I just... I wish somebody could translate this and keep me out of it, but it would be right.
And then I could just put it... Because I would... Listen. I'd start a Spanish version of the Juice Box podcast in five seconds and put... I would put everything out.
I don't know how to accomplish that. Right? So in the course of that conversation, this lovely person gets ahold of me, and she's like, I don't speak Spanish, but I do sign. She's like, I'm I'm a... You know, I'm an ASL interpreter.
And she stood herself in front of a blue screen and interpreted the entire bold beginning series for people, which is, like, don't... Like, lovely. And it's amazing. And I think maybe, you know, the videos have... I'm actually looking right now because I...
Oh, actually, the the the first video has been up for eleven months. It has a fun... A 150 downloads. And in my heart, what I think is I reached a 150 people who are gonna be helped by this, and I think that's terrific. And maybe there's not even a need much beyond that.
I have no idea. But I paid that person thousands and thousands of dollars out of out of my pocket to make this thing thinking that someone would see it and go, oh, that's a great idea. Let... And nobody comes along. And you show it to people and they go, that's nice.
You you know? And you're like, oh, okay. Mhmm. I see. So so once you, like, once you are...
Like, I'm dying to know, like, the the Spanish thing, did you... Is it popular? Did you... Were you able to get it to people? Or are you in the boat I'm in where I'm like, I've helped a certain number of people.
It's been very valuable for them. I don't know how to get it wider than this.
I think option d. Because when people came up to us at that booth at the ADCS conference, I think the most common question apart from how... What's the catch with this channel Mhmm. The second most common question is do you have it in Spanish? And so we thought when we figured out the formula and we create a Spanish channel, it will probably take off.
And our Spanish Instagram, for example, got got followers way faster than the English Instagram channel.
Mhmm.
So that was our yardstick. We thought this would take off. But as today, our English channel has 557 subscribers and our Spanish channel has 63.
I'm putting together a, I think it's... I don't know how many parts it's gonna be, but I'm putting it together a series with a therapist that is on the podcast all the time. And I basically took all of the research that talks about why people with illnesses don't help themselves or or make, you know, a ton of effort or anything like that. And then I I took it to diabetes. And I...
Why people don't help themselves17:34
Because I look at it, I think that this has gotta be... Like, yes, it's getting it in front of somebody, but I get in front of a lot of people. And I was actually pulling something up to to tell you something. So I've been for years told by clinicians, I... Oh my god.
I share your podcast all the time. It's hard to share. And they mean because it's a podcast and you can't just... You know what I mean? Like, it's not one link that takes you to something.
So Mhmm. So we... You know, I made it easier to share and easier to share again and easier to share again and, like, over and over and over. And then I I was like, the... This one...
I got an email six months ago, and it's from a person in Toronto. She's a... Works endocrinologist office. She's like, listen. I show your podcast all day long, but I'm handing out paper handouts.
She's like, it's ridiculous. So I built a website, like, page that you go to and literally one click, it generates an email. One click, it generates a text or a copy or a printout, whatever you want. One click for every series in the podcast. This this is awesome.
Thank you. Everyone's gonna love this. I said, okay. I slept myself to Ohio for ADCES. I stood there for four days.
I handed out thousands of cards with a QR code on it for that website. And everybody everybody was like, oh my god. Thank you. Thank you. Thank you.
Thank you. Thank you. 84 clicks. Why don't I just walk outside and scream? I have a website for Endos to share my podcast.
I bet you I could reach 84 people if I did it that way. And and so, like, so the... Even at the clinician level, at some point, people say what they want, then they don't do anything after that. Like... Or, like...
And I'm not even... It's not pejorative to me. Like, life's hard. You know what I mean? People are busy.
Like, I get it all. But when you're on this side of it, I mean, honestly, how many hours, days, weeks, months, years have you guys put into this?
Countless.
Yeah. Right. Yeah. What's the what's the answer? Like, when you sit around...
I know... Listen. I met you guys twenty minutes ago. I know you sit around and have the same conversations I have. Like, so what's the answer to all this?
Do you have any ideas?
No. I think it's all... I would... We've tried grassroots. There's conflict of interest at work.
Right? So I can't just go and say, go to my channel. But I did get permission to, like, slip into slip it into the new onset binders. Mhmm. We give it out to flyers at events.
So the local breakthrough t one d events, things like that. I still don't know, like, because I'm on the other side also. So I'm seeing these children families come into my office. Not everybody's on the Internet. They not all have Facebook accounts.
They're not all going to these events. So I think doctor's offices, that's their common denominator. They show up to their doctor's visits. Yeah. So clinicians are the place to be.
So I even created a... What's called an after visit summary, like a... It's called a dot phrase that you can populate into the electronic medical record. And I shared that with my colleagues. It doesn't talk about me anywhere.
It just says here's a resource user. Sure. Sure. I shared that with folks at Kaiser. I've gone to a conference for pediatric endocrinologist.
I shared it with them. There's no real, like, uptick or climb in the views or subscribers after that. So I I have not figured out, and I don't think Molly has either. But if you find a tip or if I find a tip, we could share.
Can I can I just say, I hear you, sister? Can I say that? I I... And listen. You're an endo.
Right? So... And then it's funny because you would think, well, I'm an endo. That adds credibility to it. But you said it adds a layer of complexity because people are like, well, we also have an endocrinologist office, and we'd like people to come here.
And, you know, like, so conflict of interest. I've when you're done, you don't need to do it now. I I just surveyed my listeners. And at this point, the survey has been up for maybe four weeks. It has 233 or so responses.
Right? And positive impact on their physical health, positive impact on their mental health. Their their median WHO well-being rating is in the seventies. Reported negative effects are low from listening to the podcast. Their time in range goes up into 80%.
Their a one c drops by over a point. Their, their lows go down significantly. Like, all this, really incredible feedback that's there. And when I share it out into the world, in my heart, I think there's there's no endocrinologist office in the world who wouldn't be like, at least, hey. You're newly diagnosed.
Go check out this bold beginning series. Like, it's gonna put you in a good footing. We'll look good when it's over. Doesn't happen, but I'm not a doctor. And so I understand that.
Like, I understand that I get shared I get shared like a speakeasy got shared during prohibition, like, in whispers. You you know what I mean? Like... And and it happens. Like, Molly, you...
I don't know. Molly's holding up a card of the podcast that she got up in up in our... Where were you at when you got that? Oregon? Portland.
Oregon. Portland. Right. Right. Right.
Portland. Yeah. Yeah. Thank you, Portland hippies. I appreciate it.
And and so... But but there's... Even at that, like, if you looked at this survey as a clinician, you would say, I would kill to get numbers like this back from my patients. Right? Here I sit, like, I...
Every day, there's a little part of me that gets up and goes, today is the day that the man's gonna call. Like, the the machine will call today. You you know what I mean? And go, hey. You know what?
But that's not how it works. Like, I get looked at and I... And people go, oh, well, you know, that's nice. You you make a podcast, do you? And I'm like, yeah.
How would you feel if I looked at you and went, oh, that's nice. Did you go to medical school? Did you? Like like like like, why are you... Like, anyway, I don't...
The world is... I'm upset. As you could see, this is the wrong podcast for you to come on to. We could talk about this really lovely thing that you're doing because I... Because I know the back end of it.
Go ahead, Molly. Sorry.
I think part of it is building community. So for the neurodivergent, autistic, ADHD, you know, dyslexia... I'm a dyslexia practitioner. So I'm... My students I teach are not gonna go read volumes of books.
They... You know, it's not accessible to them. So I think what we're doing right now is creating an advisory board. We're circling back around our content that we've created, and we're making sure is this accessible? Is this...
Are these the topics that need to be addressed? And there are topics that we have not addressed in the videos Mhmm. That I think will really speak to, you know, I think it was Radhika who said that type one diabetes is the forgotten diabetes. Right? And then within the forgotten diabetes, there are the forgotten population, and those are the neurodivergent individuals.
“The forgotten diabetes”24:34
So I host a very small support group through breakthrough t one d if... For caregivers of those who have type one and, you know, your kids have some sort of neurodivergence. And, yeah, we're a multi marginalized group.
Yeah.
And so I think part of what we're doing, and we'll see, we don't know if it will... You know, how it will pan out, but is to create... First of all, see that community and then listen to the community, and then we're open to changing the content or our videos, you know, are they... Do they adhere to universal design? Are they accessible?
Is this the content? So I think... I don't know. We don't know, and I hear everything you're saying. And yet, I think community...
Is how to do it. Yeah. It... Because because you can use that same niche y idea because if I tell... Listen.
I tell somebody who doesn't have this going on in their life, they're gonna go, oh, that's nice. And then, you know, what are they gonna go? Spend the rest of their life looking for somebody who's gonna, you know, be valued by this? They're not speaking of that. How did it impact your daughter?
Like, how did it actually end up working?
Type one or the videos or...
The the videos. How did they how did they, like... I mean, did you did you give them to her and go, It worked. I knew it. Or, like, you know...
Actually, as... So as a caregiver, I need to be trained first. Right? So I've watched, obviously, the videos because I'm doing most of the social media. So I have learned so much.
And then, yeah, we've showed them to my daughter, and then they hand... Like, so for example, we went on a river rafting trip in Idaho. You know, us and our Garmin, ten day trip on the Salmon River. And as a type one parent and my daughter's autistic, I was terrified. Right?
But I'm not gonna let my fear keep us back. I watched the several videos. My biggest fear was ketones, obviously. Right? What if she goes and, you know, gets ketones?
So I printed off one of the diagrams that Radhika had put in her video, and I brought it with me. So I'm almost like a case study. Mhmm. Radhika is not my daughter's doctor. I watched the videos, and I used the content.
And, yes, I've shown... My daughter has had some other health issues in the last few years. So last two years, unfortunately. So she's just getting healthy again
Mhmm.
And we're gonna start watching them again. But early on when she would watch them, yeah, she understand what type one diabetes is. So visual processing is so important Sure. For her neurodivergent mind, and she thinks in pictures.
So... I I I have to tell you that the number of people who read the podcast and have never heard it is is stunning to me. But it's a it's a populate... There is a there is a population of people who just read the podcast. They they...
I... And I... One of them helps me is like a group expert in my Facebook group. And when... And I knew her for years before I realized.
I'm like, you don't listen. She goes, I've never heard that podcast. I was like, oh, okay. Because that's not how I would do it. So you just don't assume anybody else would do that way.
It's it's really fascinating too. I mean, it's funny you said what you just said. I I describe that I talk in pictures sometimes.
Yeah.
That I paint I paint pictures around ideas because I don't have big words for things. I I know them. Like, if I sat down slowly and thought about something, I'd say something like... You remember earlier when I said, what problem are you solving for? That's the thing I understand.
But when I'm talking, it's not... It's never how it would come out of my I I was... When I said it, I had to stop myself from stopping the conversation to go, I can't believe I used that phrase. So... But when I...
I think that's where... If you can find a way to describe an incredibly complex idea that has a lot of big words attached to it. I I always just say that I've I've I've I've basically boiled diabetes down into T shirt slogans and ones that if you can remember in the middle of the night, you'll be okay. And that's sort of how it goes. You know?
I'm glad you're... I... It's really cool that you're doing it. But how much... You said you don't have everything covered.
What content do you have right now, and what are you hoping to add?
So right now in the 50 plus videos we have in the English channel, we pretty much got the basics down. New onset, ketones, diet, free foods, like all kinds of things. And we divide it into playlists so it kind of becomes easier for you to navigate the YouTube channel. Yeah. But what Molly is talking about is that's all well and good.
Kind of everyone with type one needs to know that. Those are your building blocks. Actually, we also have a playlist on mental health and exercise, which we put together with Ginger, Ginger Vera. Mhmm. So...
Interoception, and what the videos cover29:38
But that being said, for one, for neurodivergent community, we need to probably break it down and rebuild it, in words and formats and, you know, animation that it's more attuned with them. I think right now the videos hit a lot of the high points, but just to make sure to be hit all of them. It could be something as simple as it's too long. It needs to be even shorter. Something like that.
So that's one thing we're looking at. The topics that Molly is talking about is, for example, one is called interoception. So interoception is a concept where how... When you're low, somebody might say, I get cold and clammy and hangry. Somebody else might say, I don't get any of it.
I don't feel my lows. Somebody else might say, no. For me, it's headache and I get sweaty. I don't really get hungry. So that feeling of what happens to you in any situation, that's called interoception.
Mhmm. So with, folks, autistic folks, they may have it, but may... They may not be able to make the connection that, oh, it's because I'm low that I'm feeling this. So our low hypoglycemia video start with cutoffs below the sugar that's called hypoglycemia. This is level one, level two, all that.
Like you were saying, breaking down a complex concept to something that's... Doesn't have complicated words and big words. But for somebody who's autistic, that's not their starting point. Their starting point is more of, have you ever felt such and such symptom? Or do you...
Have you ever been in tune with your body? When that happens, maybe your caregiver or if you're talking to the caregiver, when your child is feeling uncomfortable, maybe pull out their Dexcom and see what their blood sugar is like. That could be their feeling of when they're feeling low. So there's a whole context to that. Another whole context is executive functioning.
Simple things as how do you wanna prepare for your doctor's visit? How do you wanna prepare for your day of school with the type one folded in? What else, Wally? There were other things we were thinking of too. Sensory issues.
Mhmm.
You
know, it's great to dose and then pre bolus and say go eat, and we know that that's not gonna be as straightforward with autistic kids' sensory processing issues. So how how do you go about that? You know, do you do half the dose before, half after? How do you wear a Dexcom if you don't like things on your body? So in our advisory board, have occupational therapists.
We have an expert, Kelly Muller, who talks a lot about interoception. We have a pediatric psychologist. We have a Pete Zendo from The UK who's very passionate about this population. So topics are varied, and in each topic, we'll have different parts of the advisory board come together to help us with the scripting. And so so the...
But you see the... We've gotta figure
out if that needs to be its own channel or just separate playlist on the existing channel.
I have a thought. I don't... I... As you're talking about it, I I keep thinking, like, I think this would be good for everybody. I don't know why this is just for people with autism.
Good for everybody, not just some people32:36
I mean, like, in in a world where everybody wants something, like, you know, boiled down and simple and quick, I don't know that that doesn't work for a lot of people. I... Listen. I've said it out loud a million times. I'm happy to say it again.
I've built an entire ecosystem around the idea of, like, the timing of your insulin. You would think that should be a half a second in a doctor's visit one time. Hey. We're gonna pre bolus our insulin because it doesn't start working as quickly as the food does. But but I could probably show you a diary full of emails that say, hey.
You saved my life. I didn't know about pre bolusing. And I and I think, wow. Okay. Like, is that...
You know what I mean? Like, in my heart, that's, like, such a simple idea. But for all those people, it wasn't. So I don't... I mean, I I would take them...
I would take the branding off of it. Just push it out to everybody. Have you have you considered my crazy idea or no?
No. Not at all. I mean, no.
Look. What you... You know, one hit on it, Scott, is that... So principles of universal design, if you break down accessibility barriers, it's accessible for everybody. Right.
So you you hit it on the nose.
Yeah. I think you're limiting yourself by saying it's for these people because I
I think the
You know what I mean? No. No. I bet you if you showed it to people who had no foot in the autism community at all, I bet you they'd say this is this is fantastic. I'd show this to my little kid.
You know what I mean?
Yep. No. It's interesting. It's it's funny you mentioned that because I think when we started out, we had the exact same idea. Mhmm.
Like, yes, we're making it for neurodivergent individuals, but obviously, that doesn't mean you cannot get on the website and see it. 60% of people consider themselves visual learners. So it could be... It's meant for everybody. So I think how Molly and I look at it as neurodivergent first, not neurodivergent only.
Mhmm. Okay. When we went around saying that, actually, couple of people gave us a feedback like, yeah, but that's not niche enough. Like, I don't know what you're selling anymore. So we're like, no.
This is for everyone. They're like, no. It was very fascinating because we said this for everybody. They're like, no. It's...
It needs to be a little bit more niche so you find... You know, we won't think about cornering a market that nobody else did.
Who said that? What what was their background?
They were, in the type one diabetes community for decades. Not a doctor or educator of that sort. Just a passionate
parent. Can I tell you something? I... Don't listen to anybody. Just don't don't...
Listen to yourselves and... Listen. I I... I'm gonna give you, like, a twenty second, like, history lesson here. I started making this podcast January 2015.
A hundred and fifty podcasts that didn't last35:12
At the time I started making it, I don't believe there was another diabetes podcast that existed. The ADA probably had one six months before me, but if it helps you to know that in the last twelve years, they've got as many downloads as I've had in the last six months. So it's not like a widely listened to thing. No no shade ADA. Like, I...
I'm just saying, like, them for perspective. Okay? After I started making one and I got an ad, a lot of people had the bright idea to make a type one diabetes podcast all of a sudden. And then they started coming and coming and coming. And since then, I stopped counting years ago, and counting is a...
I I sat down one time and looked. But there have been over a 150 people starting and failing making a type one diabetes podcast since I started mine. And there are still some that exist, and they're lovely. And I don't... I...
Some of the people I know and some of the people I don't... They don't reach people nearly in the numbers that I do. And every one of them back then in that space... Because the blog space was huge and every... They all would point fingers at me and tell me, you're doing the wrong thing.
You're not allowed to say that. You shouldn't be doing this. You're gonna hurt somebody. This is the way you should do it. Blah blah blah.
Where are they all now, Radhika? You know what I mean? Okay. And so I knew what I was doing was working. I saw it working, and I said, I don't care what anybody else thinks.
I'm gonna keep doing this thing. And it keeps going and keeps going. I do things sometimes, and it blows up in my face. And I I go, okay. Well, I won't do that again.
And I do things sometimes that I don't think anybody would else would do. And I think specific to you, in the last couple of months, a new page that I put on my website has a thousand clicks. It's not a lot, but it's a... But it's not a... It's not it's not nothing.
Right? This one page is just a jukebox of kids songs made made from my diabetes content. So they're, like, sixty, ninety second things you'd put on in your minivan for your three, your four, your five year old to hear about pre bola sing or taking my meter with me or that kind of stuff. Right?
Brilliant.
Yeah. Brilliant. Yeah. Thank you.
Yeah.
I know, by
the catering me is like,
Molly, thank you. But I know.
You're welcome.
Okay? I have no I have no shame. I'm a genius. That's fine. And so You are.
No. No. No. No. Stop.
And... But what I learned was is that my content... Like, AI opened the world up for me. I was like, I have 2,000 episodes of conversations. Stop thinking about them as conversations and start thinking about them as data.
And then once I thought about them as data, I was like, oh, snap. I could turn that data into poems. Poems. Oh, that sounds like a song. And I was like, okay.
Kept it in the back of my head. All of a sudden, about six or eight months ago, I'm flipping through TikTok, and people are turning their text messages into songs. We've all seen this. Right? And I was like, oh, how'd that happen?
That was definitely AI. I can't sing. These people can't sing. Woo. I went back.
I was like... I said, take the bold beginning series and turn it into children's songs to help them understand their thing. And then I sat and wrote them and changed them and, you know, I I massaged them around so they didn't feel too robotic. I might have put out hundreds of versions of them until I got it to where I was like, oh, it doesn't sound like a robot singing. Like, it sounds good.
You know, it's jingly. Like, it'll work. And then I thought, oh, I'm gonna put these online and people are gonna roast me. And I swear I thought, I don't care. And I just put them online.
Right? And when I put them up there, what I got was some people said, oh, you use an AI. You're gonna burn the world down. And some people said, this isn't a real person singing. But you know what most people said?
Hey. My kids listening to these in the car. Thank you. You've been... I...
People have been asking me for years, make content for kids. And I couldn't think of anything that I was good at that would interest the child. And so then when when I did, I was like, do... So my point to you is I wouldn't listen to anybody. I would just do exactly what you think is right.
You're the only one doing it, by the way. I love people who will tell you what to do all the time. Go do it yourself. Stop telling me what to do. I don't see you getting off your ass doing a thing.
You got a ton of ideas for me. Okay? You... You're so smart. Go help people.
But, like, I like, you guys have motivation. You've got a good group around you. You've got a terrific idea. I wouldn't listen to a person about anything. I really would.
Noted. Yeah. Yeah. I'd say go for it. I...
Please. I... You're here. You're doing the thing. You you know what I mean?
You're the experts on it. You made yourself that, that, really. Like... So Yep. Till somebody comes and takes it from you.
I don't know. You need you you need you need this much of my narcissist, Emiratika. Just this much of it. If I A little bit. If I could just put it like a cookie for you, you could, like, chew on it a little bit every day.
You'd be fine. Just get out there
and tell...
Go ahead, Molly.
I don't think we're in this space to... I don't think we have the anticipation that we'll be huge influencers and, you know, we'll have... Because we're such... We're targeting such a small population, but I think, like, you're putting your... Those songs out, and it helped a certain amount of people, and that's huge.
This is why I brought up....
Within the type one community is huge. Yeah. So... This is why
I brought it up for you because those songs are not gonna pop off and be some crazy thing like the podcast is. That's not what's gonna happen. But it's gonna help those people. It's just like the ASL videos. It's gonna help the people that it helps.
And you put... You you know, you just light a bunch of little fires all over the place, and all of a sudden, it's gonna be daylight. So I think you guys are... I would just... I don't know what to tell you, but keep going.
Like, it's awesome.
Thank
you. Yeah. Yeah. What's the website?
Animat1d.org. Animat1d.org. Okay.
Yeah. I assume you'd like it if people would give you money.
We do
not. Why would you mention? Stop it. Go give them money. What are you doing?
And... But but seriously, how long you've been at this now? Like, since the two of you had that conversation and you turned it into a a... An org, how long has that been?
January 2024 is when we registered as a nonprofit. May 2024 is when the YouTube channel went live.
Oh, you're moving.
November, December 2024, the Spanish channel went live. Mhmm.
Website's great. It's easy to get around. It's lovely. I mean, takes you to the YouTube channel nicely. Like, it doesn't mess around.
It's very colorful, easy to use. Like, it's delightful. Really, it's... You have a lot of videos too already. Look at
you. Yeah.
Our goal... What we have in our mind is, we'll see, is to become, like, the Khan Academy of t one d. Yeah. So that's that's our goal.
I think this... Are you... So what's the what's the the most important next step? Is it more content? Is it more distribution?
Is it more people working with you? Like, what what do you... What's your pathway look like?
So I think the first main thing that we're focusing on right now is to almost, like, audit our videos and make sure they're neurodivergent accessible and create all the content we talked about. So pulling back one step, Scott, so what you were saying, I think Molly and I are completely with you on the same page that these videos are for everyone. Mhmm. But I think what messaging got lost is the neurodivergent community didn't didn't think it was for them. So it was almost like getting them out of their, you know, shell like, no.
The message that got lost42:35
No. No. It's for you first. So you get on it. It's a happy side effect that is for everybody else.
Mhmm. So I think that's what we began to notice. Like, when we would take it to friends and families at Molyneux, they're like, but is that for me? Because they're so used to thinking everyone is everyone who's neurotypical. So, like, no.
It's... So I think that's why we need to change the messaging so they are the ones who get on the website because that's where the story started.
Yeah.
So that's why coming back to your question you asked me now, the main thing we have is this advisory board and we have a, we have a few families on the advisory board who are gonna help look at our videos, tell us what... Which videos made... Videos need to be made. So what we are in search of is adult individuals or families of children who are neurodivergent and have type one who'd like to be a part of that focus group where we could say, you know, first get feedback from them. How...
You know, like, almost like their lived experience feedback. And then we take a video to them and they're like, this sucks. I don't know if you're allowed to say that on your podcast.
We... Trust me. We're being polite on this podcast right now. You can say whatever you want. Don't worry about it.
And
they kinda tell us, like, you know, I would love it if they show it to their child or the adult sees it and says, this is why... Where I'm getting stuck. And because I'm the one doing the animation and the scripting, we take it back, take it down, put it back again, and they tell us again what they think. So I think that's one piece we're missing. Second piece, like you were saying, we need funding because not many people would love to be volunteers.
Some of them would actually like to be paid for their time.
No kidding. People are hungry, are they? Yeah. Do they do they want the heat on? I...
Well, listen. I could be... I would be... Happily, when we're done, I'll share document a with you. I spent about two years collecting people's struggles in a list and then distilled it down to...
I think it's, like, thirty, forty ideas, right, that people, like, kind of universally struggle with with type one diabetes. I have a, a page on my website. It's it's juiceboxpodcast.com/jpfaq, I think. It's an FAQ page. But what it really is is it's all of my content mapped through those struggles and through the top 250 most googled type one diabetes questions.
So I took those questions and these struggles. I put them together, reverse engineered the search function so that it it it knows what people are gonna ask about. So you can plain language ask, and then it routes you to different episodes of the podcast.
Oh, nice.
Yeah. I appreciate the face, Molly, because I know when you're talking to me, you think he might be an idiot, but then you hear something like that and you take it.
Website, and I went through it. When you click start here
Yep.
And then what's hardest right now as a caregiver, I was thinking this is brilliant.
No. No.
No. Then I would just add a category. My child is neurodivergent.
Oh, I don't know if I have content for that.
Well, let's make it.
Well, that's no problem. That that... That's just getting the right per... So I'll tell you that... Listen.
I I feel for you around making content. I I use this as an example all the time. I do mental health stuff with a a licensed marriage and family therapist who has type one diabetes for almost four decades. But I went through a lot of therapist conversations before I thought, oh, that's the one I wanna do it with. And then she had to be interested.
Moderating a space you can't see into46:04
And then we... And now we do stuff all the time together for years. But it took me years to find her, you you know, because you can make the the thing about content creation, maybe not so much for you as for me, because mine's more conversational. But you can put the the information. It can be perfect.
I mean, Eratika, you know this better than anybody. You can give personal list. This list will save their life. Good luck getting them to read it. Good luck getting them to understand it.
Good luck getting them to hold on to it to refer back to it. Like, you have to find a way to say the thing in a way that sticks. And Mhmm. That's not that's not easy. Like, that part's that's the hard part.
And, you know, so my point is around neurodivergent stuff. Find the right person. I'll I'll make a I'll make a... I'll make 30 episodes with them. You just gotta find the right person.
The same thing around... I still struggle with celiac. I'll tell you right now, I would love to have more celiac content. Every time I talk to somebody, they get a little... I don't wanna use the wrong word.
They seem butthurt that people don't understand celiac. I said I didn't wanna use the wrong word, then I just used the only word that was in my head. They... The... I think they're more they're more insulted that people don't understand than they are interested sometimes in spreading good information.
And then when you give them the opportunity to spread good information, they don't have the background. And so I struggle to find somebody who could... And now maybe someone will hear this and go, I know. Well, send me an email. I'll make a whole series about celiac with you.
Right? I've did it with thyroid, and you have no idea how many people I... Emails I get back from people are like, oh my god. Like, my life is so much better now because you told me about, like, thyroid problems. And so, like, I'm happy to do all that stuff.
Finding the person is the hard part.
Yeah. Yeah. Especially in this space. So... Yeah.
Yeah. Yeah. Well...
We'll find them. We'll find them.
Did you hear Molly said, especially in this space, she used four words to relay so much pain. And, like, she's... Because why? First, I don't wanna get you in trouble, but it's a very personal thing to people. And when it's not done the way they think it should be done, they think it's being done wrong.
Right? And then they... Their back gets up about it. And then what happens? You you end up with a thousand different factions of ideas about how things are supposed to go.
Am I getting that about right? Yeah.
Yeah. Well, I think in the autistic community... Mean, the saying is if you've met one autistic person, you've met one autistic person. Right? So all our experiences are so diverse and heterogeneous that...
Yeah. We're... We will have to sift through a lot of qualitative data to figure out what is the experience and what is the need.
So... And how do you cover the most people because you're not gonna cover everybody?
No. No. Yeah. So unlike Scott, to your point, you have an extremely popular podcast and it's... You've had it for eleven years.
And even you said you don't have much for neurodivergent content. So... Which is where we're like, this is a twice invisible population. Mhmm. And and that...
If that's where our journey started, we wanna... I wanna stay true to it. Yeah. So... And that's why we had to rephrase our mission statement to use the word neurodivergent because the old version which we had, which was also a good mission statement, it was just not hitting the right population.
So when we were putting the advisory board together, they were like, yeah. I didn't realize that's what you're doing because with your website, I didn't... I wasn't getting that message, that this was meant for my child or my patients or my family. So that's why we had to kind of rephrase everything.
Well, this is for me. It's certainly... I'm not speaking for the two of you at all. And... But I will tell you that my experience has led me to believe that one of the reasons the podcast is popular, and this is gonna sound crazy, is because I don't have type one diabetes.
So I don't have a perspective that's personal. My perspect... My perspective is more, like, just functional. Right? And then I don't know what it feels like to be low.
So what I'm telling you, I would need a thousand carbs here if I was you. I don't have any of the, like, you know Yep. I don't have anything behind it. I've never been low, like, in the kitchen going, I'm just gonna keep eating because I'm afraid I'm gonna die. And so...
And I don't dismiss any of that. I'm just saying I don't come from that perspective. So I always think of it as, like, I have a caring concern. I think I have a reasonable understanding, but I have a dispassionate perspective. And I think that's what helps.
So when people are telling you what they want, they've gotta remember that there's probably some core truths that cover everybody. You just need to cover them, and then they can infer the rest. You don't have to give them every ounce of detail. You just have to give them enough to get them going and get them going in the right direction. That's what's worked for me so far.
But but it's... I... Listen. It's not tough. It's not not tough.
I have plenty of people who think that I... The... What I say is wrong or the way I say it isn't right or I should say it a different way. I have... You know, I try very hard not to listen to anybody but still take in good feedback at the same time if that makes sense.
I would also say, disconnected from that, I have a small but powerful neurodivergent population inside of my Facebook group.
You do? I've seen them. Yes. And and I'm cheering them on.
And it's it's it's an interesting moderation issue because they don't run around telling people they're neurodivergent. I just know they are from having to have, at times, been like, hey. I pulled your comment down because, like, be nicer Or, like, or, like, hey. You're missing the boat here, like, on this or something. Then I'll get a note back from this.
It's like, look. I got autism. I'm doing my best out here. They're like in a... You know?
And I don't know another way to say this. Like, visually, I wouldn't get that from them. Like, I didn't look at them and think, oh, I see that. So I don't have any way to, like, to know that, but they'll reach out and tell me. And then I'm in the weird position of when I'm moderating, like, I know these people have this going on.
It's not mine to tell other people. And sometimes people will message me and be like, hey. This lady is being rude to me. And I'm like, she's not being rude. And, like, I got...
Try... Like, I'm trying... Like, it's a weird space to try to massage, but I have found it worth the effort significantly. Also Yeah. Often their feedback is, like, spot on.
It just sometimes can lack grace or I don't
know coding. Yeah.
Yeah. Whatever you wanna call it. Exactly. Yeah.
It's Direct.
Yes, Molly. It's very direct. And and and at the same time, I don't want I don't want them to feel discouraged. I don't want the other people to... Because what I've learned too about that populate...
About the the diabetes space in general inside of that group is that if you just make it a friendly place where people can come in, they give to it and take from it what they need and what they want. And it helps everybody. So you don't want to... I don't wanna push anybody out of it.
Yeah.
But I have been seen as defending a jerk publicly, and I just bite my tongue and don't say anything Mhmm. Using this story as my as my guiding light. At some point, the Philadelphia Eagles were coached by a man named Buddy Ryan. They had a wide receiver named Chris Carter who was really good. He was very good down at the goal line, so he caught a lot of 10 yard passes for touchdowns.
One day, Buddy cut Chris Carter. He was the leading touchdown catcher on the team, but he cut him. And when the media came to him and said, why could you possibly have cut this guy? Buddy said, all he does is catch touchdowns, which is a ridiculous statement, and everyone knew it. And for years and years and decades, you could not get a different answer from Buddy Ryan about that.
And one day, Chris Carter was interviewed, and you can go find it. And what he said was, I had a serious drug problem, and Buddy Ryan saved my life. Mhmm. And then never told a god soul ever. And that's how I moderate the neurodivergent population inside of my group.
I just... It's between me and nobody else. And that... And if I gotta take crap over it and I gotta stand at 25 press conferences ago, he just catches touchdowns, which is not a reason to cut somebody. I know you two ladies maybe not huge football fans.
But, like, O'Malley is. Okay. Yeah. But that is not an excuse you would use for cutting Chris Carter at any point in his career. And and then to look fifteen, twenty years into the future and to see that interview with him...
Because I always thought that was amazing. Like, I... There was part of me that was always like, something else is going on here. I'm never gonna know what it is. But one day when Carter came out and talked about it, Buddy was dead by then, I think.
And all I could think was, like, what a good guy. Like, what an awesome thing to do for another person, you you know, and and to see the gratitude on his side. Anyway, it's... That's how I feel when I'm doing that there.
Right. Scott, that's awesome because you're giving... It's a very personal decision to reveal any part of yourself. Right? So to reveal someone is neurodivergent or autistic or this, and so you're giving agency.
It's not for me to say. Yeah. You know?
It's someone else's story, so that's awesome.
And so why did I tell that here? It's maybe so some of the people listening who think I'm a jerk could prop... Might go, oh, maybe things are going on that I don't understand. Yeah.
Be curious.
Yeah. Yeah. Yeah. But that's a nice way of saying don't talk about things unless you know. Molly, you're you're you're in a good way of talking.
Go ahead, Pradek. I'm sorry.
Yeah. No. No. I think how... And I was thinking about when you were saying you don't have type one.
You know, I don't have type one, but difference between you and me, I don't have any personal connection with type one. Mhmm. But where I sit in my clinic, I have all these wonderful families who I care for, and I feel like I'm basically crowdsourcing their lived experience. Yeah. So, like, I think that would give me a unique vantage point.
So when we make a video about anything, you know, with, like, say, one autistic individual, I could kinda put things there that I hear or I see in the clinic. So somebody, you know, somebody who's got an autistic child, they're like, oh, that sounds like something I'm going through. So unlike yours where it's, like, all front and center, which is also great, they need a safe space to talk. I find that, you know, kids and adults might see the video and almost feel like in a nonthreatening way, see like, oh, yeah. I do that too.
But not have to worry about it because now it becomes a little more comfortable
Private.
Because it's happening to a character on the screen, not to them.
Yeah.
But I think that's what we're hoping to do. Like, you know, take the blinders off, of normalize it and let people know, like, we hear you. You're not the only one going through this.
That's
weird.... Are others who are literal with their feelings and come across as blunt, but that's just who they are.
That's how I think about the more conversational as... Conversations inside the podcast, those episodes. Ones where people will say, like, you didn't talk about diabetes much. I'm like, that lady talked about five real foibles in her life that you are probably right now mapping back to yourself and going, oh, when she said it, it sounded ridiculous. When I do it, I think it's reasonable.
Maybe I should consider that for another second. Right? And that is another great way. You can't always tell somebody they're learning. That's that's not valuable.
Sometimes it just has to happen in front of them. And my daughter said to me the other day, she goes, you came downstairs. My friend was here. And I I won't give the details of it. She goes, you said this, this, and this.
And she's like, I know why you did that. And I was like, oh, yeah? So what do you think? And she told me and I like, oh, that is exactly why I did that. Because I was trying to get her friend to think about something without thinking about it.
So I said something about myself in passing and then never leaned back on it again. I think she'll get it or she won't. Right? But, yeah, that's just... I think it makes a lot of sense to do things that way.
Mhmm. I will tell you too. There will be people who listen to this, and they'll... And I'll get a note that says, you didn't let those ladies talk enough. You talk too much about your podcast.
You... Let me talk to them for a second. Everyone would have shut this off twenty five minutes ago if I didn't do this. And that's the other thing that they need to understand that if I say this is an episode about animating neurodivergent type one content, five people are gonna click on it. Like, you don't...
Like, it's hard to, like, you you... This part of it's important. Like, right? Like, I know that you don't know you're being manipulated while you're listening, but I am manipulating you while you're listening into thinking, I wonder what dumb thing this guy is gonna say. Let me hang on for another five seconds to see what happens.
Then I let you guys in, and you say something thoughtful. They hear that by mistake, and then wait for me to be stupid again. It's a... Listen. It's an art form.
The Molly, it's a... It's an art form. I'm just gonna tell
you right
now. But...
But now the secrets are people most are.
No. That's the great thing. Don't forget. It doesn't matter. I I take hate listens just the same as happy listens.
I don't care. All the downloads count the same when I'm cashing my checks, so you all know. What am I not asking you about that you would desperately want people to know about? I wanna give both of you a chance.
What they actually need59:15
We didn't expect that question. Well, let's see. Videos... Our videos are bite sized. They're a unique space because they're made by me, so it's all medical...
Medically accurate, but it's also folding and lived experience. So it's probably the own... And it's comprehensive. Mhmm. So our hope is one day if you're like, I have a question about this.
Where can I learn about this? You can land on our website or another YouTube channel and find it. That's our ultimate goal. So pump sensors, devices, mental health, exercise, something with interception, like anything you have in mind, it should be there. If you don't find it there, drop us an email.
Let us know what's missing, and we'll make it happen.
Nice. Molly?
I would say if you're autistic, neurodivergent, ADHD, reach out to us. Contact at animate t one d dot org, and we would love your input. So... Awesome. Yeah.
We want to hear from the community, and we want you to be seen and as much as we can as to pretty determined women support this community.
You see how lovely these two ladies are? I just wanna be clear to the people listening. I don't care what you think at all. I'm just gonna do whatever I want. So I would I would never change the podcast based on your impact.
And that's why this is fun.
No. I'm just I'm just... I... First of all, I'm joking about that. There's one more...
No.
There's one more thing that they should know that it's entirely volunteer run. We don't have any paid employees. Mhmm. And all the money that's gone into it has been personal donations, a lot of credit card swiping. So just to give them a sense of how this has been all put together so far.
Good for you. Mhmm. That's awesome. Do you think anybody... Has anyone shown a desire to get behind you?
Helmsley Foundation, something like that? Anything there? Helmsley could maybe just, you know, just empty the change in their pockets and keep you going for a couple of year. Anything like that at all, Rodhika? Have we heard about that?
I know. No. No. Because Hensley actually on its website says large institution backed. So...
And I think that's where we kinda run into trouble. In the beginning, I... We realized it because we just didn't have enough of a footprint, but now we do. We have a couple of years worth of tax returns and impact reports that we can share. So I'm hoping that the donors with deeper pockets will now kind of pay attention.
Because I understand if you wanna cut a big check, you wanna see something. Yeah. So now I think we've got a couple of years worth of something. Yeah. So now we're hoping now we're hoping to reach out with a little bit more of substance.
Okay.
Mhmm.
How about, devices that are good for are there, like, a... Is there a device that neurodivergent people find more palatable? Like
As far as...
I don't know. A pump, a CGM? Is there something that... Do you know what I mean? Like, that you could sell some ads or something like that?
Or do you know what I mean? Like, get some backing that way. I don't know.
Yeah. We're open to that.
And usually, Omnipod tends to be
Yeah.
More popular with, you know, autistic sensory individuals than Keith Slim or any of the tubed ones. So both of them. Right?
Yeah. No. That would be a lovely thing for them to be involved in. It's not... It's a...
I would imagine a fairly low dollar endeavor, and they could, you know, get get into a population where maybe they're not thinking about it. I would think all companies should be thinking that way. You you know what I mean? Like Yeah. I...
Especially... Listen. I'm I'm I'm no professional. I also didn't go to college, Radhika, so don't judge me. But I am in this space a lot.
Why are singling me out there?
Because you... Because I'm assuming you went to college for a thousand years. That's why. And...
Two thousand.
Which one's better here? Right?
I have no idea. But the way... But look at the niche, aspect of it. Right? Like, I I know you and I were...
The three of us were talking about this before we started today, and I haven't put any of this public yet. But I've been digging in through something called PodScan, which is boring and nobody cares about. But they have APIs that you can use to look into podcasts, like, from the inception. And this podcast that I make, which is, to your point earlier, Molly, it's not even health. Right?
It's not health and fitness. It's inside of health and fitness. It's inside of medicine. It's diabetes. It's not really diabetes.
It's inside of diabetes. Right? Like, I'm a niche within a niche within a niche within a niche. And I am one of, like, fewer than 200 podcasts that have been going as long as I have been, as many downloads as I have, and as consistently as I have been. I also built a massive online community around the whole thing.
And, like, when you're selling things, talking about people helping you, you don't need to reach 15,000,000 people to sell to people with type one diabetes, your pump or your CGM or something like that. 500 of them, a thousand of them, that's a lot of people. And it's not a heavy lift of... I mean, I'm just saying, make something like this easy for these ladies. Like, let them get this content out there.
You'll sell your pumps. Like, you know what I mean? Like, they... I mean, those pumps aren't cheap. They don't have to sell many of them to make back the money they're giving you.
Like, let's go. Somebody think outside of the... I'm tired of being so smart, Radhika. I need somebody else to jump in and get involved. Okay?
I'm getting old. Can't I can't do this forever. Someone else has gotta start thinking. It can't just be me all the time. Okay?
I'm tired. Look at me. I'm I'm dying here. I'm so tired. Okay?
I need the bags under my eyes. It's ridiculous. Molly, don't laugh at me. You're out
bright eyed.
You too haven't seen the sun in six years. You don't know which way is up. What are you taking? Ten ten thousand IUs of vitamin d a week? What are doing?
Four thousand. Okay. Alright.
What's up, dad? Go outside. Go for a walk. Don't get killed by... What do you have?
Bears up there? What do you got up there?
We don't have bears.
No bears.
We don't. I mean, if you go out in the woods, but...
Yeah. Yeah.
No. We have boring garter snakes.
Garden... Can...... Ducks. Oregon ducks.
Stop it.
This is... Football ranked number two.
Is that what you meant when you said football? College
football. I grew up in Los Angeles, so I won't tell you who I'm a fan of.
Oh, that's so sad. Are you a Rams fan? No. Not even......
Should be because Justin Herbert. But...
Yeah. Alright. I'll just test you here. Would you prefer the Angels or the Dodgers?
Oh, ask me where I'm going Saturday.
Alright. You're going to a Dodgers game, aren't you?
I'm flying down to Santa Barbara, and I'll hang out with my girlfriend and go to a... I grew up going to both Dodgers and Angels games.
Well, now you've turned everyone off because they think you've bought baseball team, and now they don't wanna help you anymore as I say.
It's more hanging out with my friend. I hope maybe they'll win.
They might
not, though.
That sounds lovely. I would love... I'd love to go to a dodgers game. Okay. Alright.
You guys are awesome. I appreciate you doing this very much. Would you hold on for one second for me?
Yes.
Yeah. Thank you. Back of an episode today, wouldn't you say? Let's thank Dexcom and the Omnipod five for sponsoring. That's right, my friends.
We were sponsored today by the Dexcom g seven. Dexcom.com/juicebox. Head over there right now. Look into that fifteen day Dexcom g seven. Fifteen days is a long time.
It's like half a month. Don't check my math, but I'm pretty sure I'm right. And let's also thank the Omnipod five. My goodness gracious. Omnipod five tubeless.
That beautiful algorithm's updated now with that new 100 target. Get in there. Find out more about it. Omnipod.com/juicebox. You You want some tubeless insulin pumping?
Yeah. You do. By any chance, have you tried the small sip series? It's 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.
Take a deep dive, 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 and then go... Oh, actually, we changed the website. Let me see. Go to juiceboxpodcast.com.
And from there, there's these two little lines on the right side top. That's the menu. Then click that, then click series, then there's pro... There's small sips right there, pro tips top, all beginnings, bolus four, s... There's a lot of them there.
There's actually a little search there too. Could you just type small sips into the search? Oh, wow. That search works great. Look at that.
And then you could go right to, like, all results for small sips. Oh, and that takes you to the FAQ. You should check out the FAQ page too. I think that's juiceboxpodcast.com/jbfaq. Seriously, that thing's amazing.
Actually, whole website is... I mean, have you, like, seen it? You should you should go check out the website. The website rocks. It is a potpourri, a never ending cornucopia of support for you and your diabetes journey.
That's right. It really is. What else we got over here? Oh, I don't like the way that works. I'm gonna fix that.
Note to self. Change the change the masthead on the frequently asked questions page. Yeah. I don't like that. Fix that.
Oh, Claude. Oh, hell. I forgot to say thank you. Thank you so much for listening. I'll be back again very, very soon.
What is that noise? Stop it. Stop. Can you hear that? It's my chameleon squeaking.
Are you squeaking? What are you rubbing the branch against the... Don't tell people I have reptiles. They'll think I'm weird. Thanks so much for listening.
I'll be back very soon with another episode of the juice box podcast. Look at me. Get all deep in there with another episode of the juice box podcast. You can hear it. What was that?
Oh, I'm getting alarms and alerts on my phone. I was gonna get real deep and tell you about the juice box podcast.
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