#1926 Hero of the Day -Part 1
Hero of the Day (Part 1)
An Australian mom catches her son’s rising blood sugar almost by accident, then spends a year being told he’s an atypical anomaly — while quietly suspecting something the clinic keeps ruling out. Part 1 of 2.
Jump to a moment
- Caught almost by accident. A naturopath visit about focus and anxiety led to routine bloods that showed a fasting glucose creeping up. Felix was completely asymptomatic — the kind of early catch clinicians rarely see.
- A neighbor’s near-miss made it real. Days after Felix’s workup, Silvana urged her neighbor to chase down missing lab results — their daughter, her son’s best friend, was rushed in in DKA with glucose in the 400s. Two very different diagnosis stories, three days apart.
- The gift of a slow onset: time to learn. Because it was caught so early, the family had months before insulin. Silvana used them to work through the Pro Tip and Defining Diabetes series, so when insulin came, they weren’t afraid of it.
- “Anomaly” landed harder than intended. Repeatedly told Felix was atypical, the family held onto hope it might be something other than type 1 — while Scott suggests the clinic likely just meant they rarely see it caught this early.
- A mother’s hunch, ruled out again and again. Silvana kept raising MODY; the clinic kept leaning type 1, especially after a positive zinc-transporter antibody. Genetic testing was approved almost to placate them — and Part 1 ends the moment it comes back.
- Defining Diabetes series — Short episodes with Scott and Jenny Smith defining the terms - part of what Silvana studied before Felix started insulin.
- Diabetes Pro Tip series — The management foundation Silvana listened to daily, taking pages of notes, during the family's pre-insulin window.
- T1D Exchange Registry — US residents 18+ with type 1 can complete the survey and help move T1D research forward.
Every word of the conversation
Friends, we're all back together for another episode of the juice box podcast. I hope you have a chance to go to t1dexchange.org/juicebox and take their survey. If you are a US resident over 18 years old, have type one diabetes, taking that survey will help generously in moving type one diabetes research forward. Go do it. It'll only take a couple minutes.
It'll really help them. It'll help me. It'll help you. T1dexchange.org/juicebox. Hey.
Nothing you hear on the juice box podcast should be considered advice, or otherwise. Always consult a physician before making any changes to your health care plan. This episode of the podcast is sponsored by MiniMed and the Kontoor next gen blood glucose meter. MiniMed, of course, the innovators behind the MiniMed flex system, a small, sleek, and discreet insulin automated delivery system controlled from an app. Nothing comes close to freedom you can feel.
To learn more, visit minimed.com/juicebox. There is one blood glucose meter in this house, the Contour NextGen blood glucose meter. That meter is on my daughter's person right now and at all times. It is incredibly accurate and waiting for you at contournext.com/juicebox. Can you say testing?
Can I say casting?
Testing. But you did it. You're good.
Testing. Sorry.
Don't worry. So, normally, all this happens before you guys are listening, but I've hit record right now because I have a tight one hour window. And I so I'm gonna explain what happens in the podcast while you're listening while we're recording. Does that make sense?
Okay. Can I just say one thing? I do have COVID, and I'm feeling very so it's probably not the best time, but I didn't want to cancel because I've waited so long.
Well
So you're so nice.
Do you wanna I mean, I could reschedule you for next week and
No. No. No. No. It's fine.
I'll I'll see how I go.
Okay. Well, I'll well well, that also keeping it short then will will be smart, and you can always come back. So what I normally do in this situation is say, do you wanna ask me any questions, or do you have any concerns, or say anything before you're being recorded? So that part's kinda screwed. But do you have any concerns or anything you wanna ask me about before we start recording?
No. Not at all. I'm just hoping that I get my message along across because we've got a very interesting interesting journey,
I think. Well, you sound like a level headed adult, so I won't even go over the rest of it. We'll just start. Introduce yourself the way you want to be known. You don't need your last name if you don't want to use it.
If you wanna use it, that's fine with me. Go ahead and tell people who you are.
Meet Silvana — and Felix3:02
Okay. Hi. My name's Silvana, and I'm the mother of a soon to be 15 year old boy who was diagnosed in 2024 with type one diabetes. Our family has, I think, a very interesting and unusual diagnosis story that I'd like to share.
I wanna hear it. And since we're tight on time and I can be chatty, let's just jump right into it. Go. Tell me your story.
A naturopath visit that found something3:26
Okay. Okay. So, in June 2024 Mhmm. We actually went to see a naturopath, because Felix, my son, had been not focusing in school. He'd started the year before in high school, and he's very prone to anxiety, was extremely anxious.
So anxious that, there was all my school refusal, and that's another story for another day. But it hid the fact that he was starting to not focus as much. So we'd seen a paediatrician beforehand and they had diagnosed ADHD. And I wanted to see someone who could perhaps look at his diet and maybe look at supplementation and perhaps just metabolically Felix you know, make make Felix be metabolically the best he could be. Okay.
So he ordered bloods. And the way it works in Australia is that if you order bloods through a naturopath, you pay. If you order through a doctor, you it's it's rebated. So he suggested we go to the doctor. So Felix, ironically, hates needles, so it took a whole month, I think, for us to get bloods.
Bloods came back fine, but his fasting blood glucose level was, and I'm converting now, about a 117.
Mhmm.
Okay? Doctor was a little bit concerned, asked if Felix Adetin, had had a midnight snack as he's prone to do, and he had vehemently said no. Mhmm. So but we did follow-up bloods, and this is how lucky we are to be in Australia. We had such a quick turnaround time.
So bloods were done at eight 8AM. At 2PM of the same day, so six hours later, our doctor rang me and said that, Felix's new updated fasting blood sugar level was a 135 and that she had not seen that level before in someone who was totally asymptomatic because we had not gone to the doctor. We'd just gone to a naturopath. And she she was going to ring the hospital, the, the children's hospital. We live in Sydney, so one of the major children's hospitals, to talk to the registrar.
Savannah, let
me hours late.
Before you get to that hospital in your story, is this a thing you caught because you're out of your mind anxious or because you're a really, like, paying attention parent?
No. It's it wasn't that at all. We actually just went to a naturopath to assist Felix with focus.
But I'm saying even that, like, that's you know, there are a lot of kids running around that aren't focused, and parents don't say, oh, we have to go figure out what's happening. Was this this focus thing going on forever, and this was the end of your rope?
Yeah. Well, kind of. Felix, is at a selective school, so I'm not sure if you've got the equivalent in America. So, he's really bright. So he was tested as gifted in primary school, known as gifted in primary school, Ducks Primary School, which isn't, you know, too difficult to do, I I think.
Mhmm.
But he went to a selective school, which so he started off at a very small primary school, and then he was at a very big high school where he didn't know anybody, and he was absolutely super anxious the first year. But we had noticed that he wasn't doing work, playing games on his computer, totally distracted, but we really were paying more attention with the, pay paying more attention to the anxiety.
K.
So it kind of was left.
And
And we didn't really think about it. So we weren't really anxious. It's just that it really became noticeable when problem out. Anxiety.
Yeah. Yeah.
Yeah. Hey. And When when the yep.
You or the husband or anybody else in the family have anxiety? Is it a thing you'd seen before?
No. My mother does.
Okay.
My mother's always been anxious, but, yeah, Felix has always been anxious. So he's always been
What they call high strung, always on edge, like a like a cat?
No. I think anxious in the in terms of not like liking to be noticed.
Okay.
So he was in a very small school. He'd win awards all the time. He didn't like standing up. Mhmm. And, receiving that award.
Any speech, you know, speech days, he would not like to do them. So if we had speeches to do, he'd always go to another room and someone would film him.
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That got a lot better in year five during COVID because everything was via Zoom, and he decided it wasn't so difficult. So year six was fine. Year six, so the last year of primary school Yeah. He'd we thought he'd outgrown that, but I think the new environment of high school just brought I think he had impostor syndrome. He saw very many of him, around him and people that were a lot smarter than him, and he'd never seen that before.
Right.
So I think he felt that he shouldn't have been there. So it was very he'd always walk out of exams.
I have
the teachers to find out.
I have bad news for those smarty kids. I was identified as gifted when I was five years old, and now I make podcast in an extra bedroom in my house. So everything's not gonna be wine and roses. Okay? I wish I wish your son could have known that, honestly, that, like, these kids are not special, and most of them are.
I have to tell you, like, my inaugural class of, gifted kids, I kept up with them, and a lot of them are what you might call a train wreck now, actually. So it's interesting. You know, that that's a thing that we don't actually do in America anymore. They they've tried it in the, seventies and eighties, and it's not a thing they do anymore. Like because I don't did the same thing happen to your son?
They give him an IQ test, tell him he's smart, put him in a groom with a bunch of other kids?
No. What happened is that in year when he first year of school, he was he started to read when he was 2.5. And he could recite the alphabet backwards when he was three. He was teaching himself languages. He I think he's balanced out now.
We were quite worried that he was hyper focused. He's the exact opposite now, but I think, he was psychometrically tested in first year of school, and he grade skipped at school.
No. I wasn't that bad.
He was always the younger kid as a kid as well. But I think it's worked out reasonably well because he's got the best set of friends now.
Yeah.
And he he chose the school, funnily enough, because it wasn't the school that we would have chosen for him.
Last question before I put you back in the hospital for the story the rest of the story. Okay? Yeah. Do they do IQ testing there? Do you know what his is?
Because I I think his is probably high one forties or one fifty. Right?
No. It wasn't. It was one thirty five. So he was gifted, but he wasn't. So and the report was fantastic.
It actually basically said that he was gifted in every area, and he didn't have a certain learning style. He was just yeah. He could So it
was kinda ambidextrous with learning.
Yeah.
Yeah.
Yeah.
Well, listen. Don't tell him this, but my IQ is a little higher than that. It didn't work out for me very well at all. I cannot do algebra to save my life. I just wanna it's ridiculous, but I'm sorry.
So I'll let you skip in. So you're back you're we're back in the hospital. You moved over for your doctor, called blood work, blah blah blah, hospital. What goes
The hospital, and a word never said: diabetes13:27
from there? So the registrars called and said, can you please come in tomorrow morning? We did go in, and we saw a diabetic educator straight away, which was a real shock to us because the word diabetes hadn't even been mentioned. Oh. So we had no idea.
So we were just told that well, the doctor the day previously had just said, oh, I've never seen this before, with someone who's asymptomatic. I'll see what who should look after you. We get a call that night asking for us to come in. So we got a script for bloods, so the typical h b a one c, the autoimmune markers, all of the antibodies, c peptide. And we did see a the the endocrinologist Mhmm.
Who basically said it looks like it's very, very, very early court type one, but we are casting the net wide, just to rule out any other autoimmune diseases. So that was a shock, but we really didn't know anything about type one. Wow. So it wasn't that much of a shock then, I think. Immediately, we were given a finger pricker.
I've forgotten what they're called now. And strips. And we were asked to, test Felix, upon waking. And, two hours after dinner, and I email it to the, diabetic educator, just a log of everything at the end of the week, every week, and then they decide how early we should see the p d pediatrician again. Did So the endocrinologist.
Yeah. Yeah. Did the onset happen quickly after that, or or has it been slow since then?
No. Well, we've got a very, very interesting story. It it was slow. So but just to step back one so so that morning, we were quite we were quite anxious. We were overwhelmed, but we were in shock.
We didn't really understand. That night, I spoke to my neighbour who's a very dear friend of mine. She has a daughter who is very close friends with my son. Mhmm. And they've grown up together.
And I debriefed. Not saying anything, though, because my son didn't want anybody to know that he possibly had type one.
The neighbor’s daughter in DKA16:01
Okay.
So three days later, that very neighbour or her husband rang me and said, my daughter's blood test results haven't come back. She'd been feeling sick for a whole year and a half.
Mhmm.
Very different different kettle of fish to my son. My son will tell you when he's you know? When he thinks he's going to be sick, this this our neighbor's daughter is very different. She does not complain. She'd been and you know how the story is going to end.
She you know, she'd been sleeping. She'd been urine excessively urinating. She'd been drinking a lot, but no one had really noticed because, you know, she wasn't complaining.
Mhmm.
They had done loads of blood tests over the year, and they they found iron was low, so they'd fixed that, a few other things. And so my neighbors, her father actually called me. So and he said, it's really strange. She's not getting better, but I haven't received any results blood test results. That must mean that, you know, no news is good news.
And I said, well, no. I think you should really call because they could have just they may have just missed Yeah. What you know, they may have just missed, the the bloods coming in. He called within ten minutes, and he said, you know that hospital that you said was fantastic? My daughter's just I've just been told that my daughter's blood sugar levels, were in the twenties four weeks ago.
They'd missed the pathology Oh, and they hadn't told me. So in the twenties is, I think, in the four hundreds. I can work that out now. I've got a calculator. So I he she was rushed into hospital three days.
Like, so my daughter my son's best friend was rushed into hospital in DKA three days after my son was told that he probably had type one diabetes. He was ours. Like, if he had waited an hour or two, he probably wouldn't be with us. Now she stayed in hospital for for months.
And this is because you went over to kind of, like, debrief and let them know what was going on because they were friends.
Yeah.
Wow.
Yeah. Well, they rang yeah. I know. They rang me because I'd said how well we'd been treated at the hospital, how quickly we'd been seen.
Right.
And so when yeah. When the father the father tends to ring me in the morning because he gardens really early and no one else is up, and he was just wondering why they hadn't received results And, you know, his daughter was still not feeling well. And
Look at you. You're like a superhero out there.
No. It is No. Yeah. You're you're
you're Australian supergirl. Just take it.
It was it was absolutely devastating for the family, though, because she had PET scans on every part of her you know, every single organ almost. Like and she's very lucky that she did not have any organ damage. She was in hospital for a very long time.
Certainly. I've had people on here with stories that are curl your toes about what can happen when you're not diagnosed in time, you know, leading to and including death. But some some pretty crazy stuff can happen when when you're shutting down like that and your body's so acidic and my gosh. Well, I'm glad they they figured all this out. Do are they are they married now, your son and this girl, or have they formed a kinship over this?
Like, what's going on?
It's actually quite funny. They're they're actually not as close as they used to be. She's become a very emotionally stable girl, and my son has he he's just hit puberty, so he's regressing. Yeah. I'm hoping he never listens to this podcast.
But, yes, he's, yeah. I think they're they're at different stages at the moment. I think they they'll, it'll change. But at the moment Well,
they're both being private about it with each other at least, I guess. Does your son talk to other people about it?
Restricting food, chasing the numbers20:14
No. No. He doesn't. He doesn't. He didn't want anybody to know once he got the CGM on.
He didn't want anybody to know, so that that was difficult. But what ended up happening? So I started documenting everything in terms of, you know, food diary and, you know, all we had we had the blood pricker, And what we found were was that his fasting blood sugar levels were from about 115 to a 160, and his highest blood sugar levels were about 200.
Mhmm.
So not great, but not not bad by by any means. He wasn't restricting his eating at that stage, but very quickly thereafter seeing that walking and not having sushi would, you know, reduce his blood sugar levels, he started restricting his eating. And my son is quite thin and quite small. Genetically, he hasn't hit the hit jackpot because I'm five foot and my partner's not that much taller.
And
so he started he started spiraling from then in terms of not really spiraling, but just looking at the figures and trying to change those figures with walking and eating. So going low carb
Are
you despite listening to the podcast.
Well, is I I don't mean that low carb is a a disorder, but are you describing like, is he scared of food?
Well, he's not now, but he he's always being a great eater.
Okay.
He was then because he he loves figures. So math is his is his subject that he absolutely loves. Mhmm. And so finger pricking was great initially, but then led to him being anxious about the figures when they were higher than what he would have liked them to have been. And that was him doing research.
We were trying to assure him and, try to keep him eating normally. Mhmm. But he was just getting more I mean, there were nights where he'd walk for two or three hours with us because he didn't want to be high. And high was generally not much higher than one eighty, not where you want to be, but not you know? I mean, he's not on anything at the moment.
So
Not on
I think it was
What do you mean not on anything?
At that moment, at at that stage, he wasn't on insulin. Oh, I see. That Oh. Were the figures.
They didn't put him on insulin right away?
No.
No. How long did that go on for?
A long time, and that's that's the journey. Yeah. Quite like, I think he was he possibly about three or four months.
Would he have been better off on insulin, do you think?
No. No? Not in hindsight.
Okay.
That's that's the yeah. No. So what that did, though, it meant that we had three or four months to really start researching. Mhmm. And so I worked from home, and so I just I found the podcast I found the Facebook page, actually.
Four months to learn before insulin23:41
And for me, it was a little bit overwhelming and not really relevant because we weren't on insulin yet.
Sure.
But that led me to the podcast, and I started listening to it religiously, like daily. So the defining diabetes, the pro tip series, I we I wrote notes and notes and notes and notes, and I think that gave us a head start. So when he eventually went on insulin, we weren't afraid of it. We knew that it wasn't going to be a linear journey. It wasn't going to be you know, there were so many variables that we had to take into account.
Every day was going to be different. And we just weren't scared to use it
Good for you.
To help. Yeah. It was no. Well, good for you. It was we were really grateful for that.
It just meant that we weren't overwhelmed. We just saw the difference between what we were going through and what our neighbors were going through.
Mhmm.
They had to deal with everything very quickly. In fact, our neighbor's daughter, suffered from edema in the hospital, and that's a really rare side effect of giving too much insulin too quickly Mhmm. Apparently is what they
The the hospital didn't handle the titration well, or they
I don't think it was the hospital. The hospital's phenomenal. I think it was just that her levels were so high that they needed to do that to that that's my perspective. I'm not sure. Wow.
Well, I pre Yeah.
Well, let me say thank you. I appreciate you telling me that. It's meaningful to me on its own, but I'll tell you it's a little more impactful today because yesterday, I recorded with a mom from Zimbabwe who was talking about how little direction she got for her her very young son and how the podcast helped her. So I'm having a I'm having a week of feeling good about making the podcast, so I really appreciate it.
Oh, it was fantastic. It just it really just guided us, guided me with a little bit of convincing. I had to convince my partner because he didn't listen to it. But Felix, my son, listened to it with me because I'd take him to school, and, it'd be on. So he kind of gained that knowledge as well, which was great.
But what ended up happening is that we had a three month period between the tests that we got done at the hospital and the next time we were going to be seen at the hospital. In the interim we got the results back, but I couldn't read them because they were really strange. They didn't have a range, you know how blood tests usually have a range? And because it's a public hospital, it's just overwhelmed. Just had to wait the three months, but we were really worried about waiting the three months.
So we ended up seeing a private endo, is so difficult because they're usually linked to public hospitals, and they usually have a two hour you know, two year wait.
Two years?
Managed to yeah. Two years. So everyone I rang had a two year wait, but we got a cancellation, and we didn't actually want to be a we didn't want Felix to be a patient. We just wanted just information. We just wanted to have these blood tests Read.
I suppose interpret it.
Yeah. Some eyes on it and give you some direction. Right?
Yeah. Yeah. So what he said he was great. He basically oh, well, he was great. He could read the bloods.
He Felix's h b a one c came back at 5.7, so not bad. Mhmm. Like, you know and his fasting blood glucose level was 7.7, which is about a 139. Yeah. So not not great either.
The three antibodies that had come back were all negative, but two were pending. So we had no idea. So at that stage, he said, well, it looks like, you know, it looks like very early court. He said the same thing, but we don't know. We just have to wait till the the two other antibodies come back.
So we had an appointment in late twenty twenty four. So the first time we'd gone in was two months prior, three months prior. And Felix's h b a one c had gone from 5.7 to 6.5. So still not bad, but it's creeping up.
Okay.
You know, in that short period, it's creeping up. Fasting blood sugar level oh, no. Yeah. Six seven 6.5, and his fasting blood sugar level is about the same. We were told that he didn't have any antibodies.
So no antibodies. His c peptide was good, and his blood insulin was good. So we're normal normal levels. So he was seen as an anomaly. Like, he they didn't really understand how he had an elevated blood sugar level.
His, you know, his postprandial levels were higher as well, but not extremely high. I forgot to say they'd put a CGM on him two weeks before Mhmm. Just to see how it's just to monitor him, and we were surprised. Obviously, then we could see the the spikes, but they weren't that high.
Right. Right.
You know, they weren't they they never really got above, say, 12, which is I keep on forgetting. Over a 180, but not that much over a 180.
Do did he ever develop antibodies, or did you just catch it so early that they weren't there at that point, or have you not even looked back?
Well, he did. So he did. So at that stage, we were told that so there there'd been an upward trend. So there was an upward trend in the c g the CGM showed an upward trend. Mhmm.
So now they're saying it's highly likely that it's type one, and they're expecting that insulin levels and C peptide levels will decrease with the next bloods. Okay? So everyone's thinking we've caught it extremely early. We've just we've just been really lucky. We've caught it so early that, you know, he's asymptomatic.
He's still asymptomatic. He's eating not exactly what he he was eating prior because he's anxious. So he's starting to eat. He's restricting his diet. Yeah.
So he's not eating that many carbs. So it's not a true reflection, really. So his levels are possibly a little bit higher. We don't know because he's refusing to eat bread and sushi and the things that he used to eat before.
Is he eating normally now today?
Yes. Yes. He's eating normally now. Yep. So the recommendation, which we thought was strange at the time but kind of worked, was to start him on a low basal insulin to to just present prevent the spikes.
One unit of basal, then figuring it out31:15
Mhmm. Which like, I just kept on thinking just listening to Juice Box. Well, maybe they would give us a little bit of novirapid or something just to but they kind of said, no. What we'll do nighttime is fine, but during the day, he's fighting a little bit higher than we would like, which for us was much higher than we would have liked. Mhmm.
But they were it was still okay. So they suggested they recommended that, he start on a low basal insulin. So I think he started on one unit of Levemir in the morning. Okay.
Well, listen. It it worked. Right? It got you through.
It did get us through.
Yeah.
So, you know, so then we had, you know, the we had a clinical nurse specialist give us injection education that lasted the whole day. Mhmm. And for Felix, that was a little bit traumatic, but I think I just got into we need to work this out. You know, we need to do this. So we started injecting.
And soon thereafter, despite Felix's absolute fear of needles, he started injecting himself. So we had the pens, and things were fine for a while. So we learned fairly. There seemed to be after we started, we had a CGM on. So Felix had his CGM.
We started noticing that his blood sugar levels were creeping up. So one unit didn't seem to be enough, and we just ourselves started increasing that dosage.
Right.
And then we kind of split that dosage and started doing morning and evening, and that seemed to work.
Okay. That and that's the thing you did on your own?
That yeah. Yeah. Well, I was a bit worried to tell the hospital. The pediatric endocrinologist is phenomenal, And my partner, Nigel, really encouraged me to just email and say, this is what we're doing. And I did, expecting pushback, and they were saying, you guys know exactly what you're doing.
It's fine. You know, he's doing really well. Blah blah blah.
So Do find that comforting or concerning that they so easily gave in to what you said?
No. Comforting.
Comforting. Okay. Good.
Comforting. Yeah. Comforting. Because we had quite a bit of we saw the endocrinologist every, say, two to three months. I think it was every month at the beginning, but every two to three months.
But we could phone the educators anytime we wanted to. Not really phone, email, because there's four for the whole hospital, so for the whole department. So we felt reassured, but we felt fairly comfortable.
Good. Good. It's good.
Yeah. We did it slowly because we didn't really know. But
And slow, like you said, was an option because of his onset because you caught it so quickly. So why why not take it I mean, in the moment, you don't understand the value of being able to go slow, but, you know, hindsight, I would imagine.
Yeah. Well, we were also concerned about Felix. We didn't want him to we wanted he to give him agency, but not burden him, if you know what I mean. So we wanted him to be involved and feel like he he was in control, but I was doing like, at nighttime, I'd never wake him if there was anything I needed to do at night. I mean, that comes further on when he needs more at night.
Mhmm. But he was, you know, he was injecting himself. He was fine. He didn't really want anybody to know that he had diabetes. But what happened at the end of that year, so we'd seen the hospital initially in, I think it was sometime in August.
The first positive antibody35:37
By December, although his blood sugar levels were still reasonably stable, one of the antibodies came back positive. So that was the zinc transporter antibody. His C peptide levels, as the hospital had predicted, had dropped significantly, and his blood insulin, which we also tested, had dropped significantly. So the narrative that the hospital, I suppose, had painted, you know, painted this picture of this is what was going to happen was happening.
Yeah. Here it It
was, yeah, it was progressing. But we'd had we'd had, what, about four months of the podcast. We'd also had four months of other research, and we'd had four months of seeing our neighbor dealing with insulin and also four months of education, really, of asking any questions we wanted. So we felt fairly confident. I mean, not really happy.
But, like, the first game of like like, you've been practicing all summer and the first game of the season is here now. You're ready to go. Like, okay. We're playing now. Yeah.
Yeah. I gotcha.
That's true. Yeah. But his HBA1 c was still at 5.7. So we've got I think it'd gone 6.2 at one stage. Yeah.
Well, we'd gone down to 5.7 again, and we were told that now it was more likely than not that that it's type one. So the hospital's really reluctant to say it is definitely type one, but with one positive antibody, they're thinking it's type one and that the August to November period was the honeymoon period that in which he was still producing insulin.
Sure.
The hospital said there was nothing that we could do to prolong the honeymoon period. I'd read about t Tavild, I think, but it wasn't available in Australia. He didn't have two positive antibodies either, and I think that was the prerequisite anyway.
Can I
ask I'm not a 100% sure?
Can I ask
Yep?
Even though I mean, it seems obvious in your story, and I'm wondering if it seemed obvious to you at the time even though the the hospital was, you know, uncomfortable saying this is definitely type one. Did you know it was, or were you sitting around wondering if it was something else?
We sat around wondering if it was something else.
Mhmm.
And We did. Yeah. We really wanted it to be something else. It's difficult to argue that it could be something else when the neighbor has it. Do you know what I mean?
Yeah. It was almost we'd seen somebody be diagnosed with it, and why would Felix be any different?
Right.
You know? We were hoping that it would be something else. And, you know, you read of honeymoon periods extending for years, so I was hoping that was the case. We were so desperate at that stage that we saw the private endocrinologist again who said that we were ninety or Felix, I always say we, but Felix was ninety eight percent in range, and his standard deviation was 14%. So that's fantastic.
Mhmm.
And that gave us some he he basically said you could that there was some data to suggest, and I'd already seen this, some data to suggest that vitamin d and omega threes could extend the period. Keeping glucose levels within range could ex extend the period. Going gluten free could extend the period. Obviously, t T shield or T shield could. There was, I think, some sort of medication in Australia that was that could be taken off label that could.
And he talked about clinical trials, but when we looked at my my partner Nigel was very adamant that Felix would not go on any Right. Trials.
Okay.
He just didn't want and to be to be perfectly frank, having just one antibody didn't qualify him for anything at that time when we were looking. So it was a moot point. We couldn't argue over that one.
Can I ask if hindsight, would it have been valuable if someone would have just said to you, like, look? We can't prove it with the test yet, but the kid has type one diabetes. Would that have been helpful to you?
I don't know. I think I think the reason why we were hoping that it could be something else was that he was always seen as an anomaly, as atypical. You know? So how atypical can you be? You know?
If it's so different to to anything you've seen before, and this is a diabetic clinic, could it be something else that's that's rare? Could it be something that you've never encountered before? So I think it was more not the because I understood that, you know, that there's a there's a there's a trajectory. You know, there's a progression, really. And so usually you see one antibody, then you see two, or you may see all of them depending on when you, you know, present.
But I don't think they'd seen it. I think the reason why the endocrinologist was cautious is because I think she just hadn't seen she most of the people that came in possibly had decay were in decay
I'm trying to find I'm trying to let you get to it.
I have no idea.
Yeah. I'm trying to let you get no. Don't worry. It's you're in Australia. We're talking to you through a tin can wire under the ocean.
It's fine. Yeah. And I bring this up sometimes. I don't know if people know that your your Internet is literally buried on the ocean floor. So yeah.
I I get it. It takes a second. Don't worry about that. I'm trying to see if you're gonna get to this idea or if I'm gonna have to say it to you that I just think they hadn't seen anybody caught this early. So they're calling it anomalous, but what they mean is we don't see this very often.
And you're hearing anomalous like, oh my gosh. Maybe there's something like, letter of the law definition of anomalous going on here. What they just mean I I really feel like from your story, what they mean is, I don't know. We're not sure. We don't see it like this.
Yeah. Yeah. Well, see, on one hand, we thought that, and we felt extremely blessed because we saw Yeah. With our neighbor how bad it
could end in morning. That's the story I'm hearing. You just caught it really well because you were paying attention to things, working on getting your kid healthier in other areas, and you you tripped into it. And and because of that, you got a nice, like, gentle, lead up time. You got time to learn and educate yourself and prepare yourself mentally.
You know? Like, that's the story I'm hearing, but it's funny because you lived through it. It felt different to you in in the moment. Yeah. Does that make yeah.
Caring for a son, a mother, and a diagnosis43:09
I yeah. That's true. I mean, by this stage, Felix is starting to get quite anxious. My mother had come to live with us. She has early stage dementia, and I'm the only child.
So I started caring for her. And I don't know. We I I don't know if we had the bandwidth to really analyse it
Sure.
That much, we on one hand, we thought we've caught it really early. We're really lucky, but we still held onto that hope in the background that it could possibly be something else. Mhmm. Obviously, when the, antibody came back positive, that was quashed a little bit. You know, we
were
quite disappointed. And then things started to progress from there. So I think, you know, I think two months after that. So in August, we went in in 2024. By February so it's been a long time, 2025, they're recommending Nova Rapid.
So because he's he you know, he's had a couple of blood sugar re level readings of fifteen fifteen, so two two seventy or so. And the hospital's not comfortable. We're definitely not comfortable, and they're recommending he's still 94% in range, but now they're starting to say, this is not the picture we want to you know, we're we're comfortable with. And it's quite strange because we'd been listening I've been listening to the podcast for so long. I wasn't comfortable with those figures either, but I wasn't really pushing insulin because I knew that that would be a big step for Felix.
Yeah. But do you And But I wonder, though, isn't the waiting adding to the anxiety? Isn't, like, isn't it, like, I'm waiting for the next shoot? Like, wouldn't it be better if it just happened? Like, pull the Band Aid off and get going for the anxiety piece?
Were also we yeah. We were also being told that his control was, you know, some of the best control they'd seen amongst, you know, the children at the hospital.
So Because it hadn't really onset completely at that point.
That's true. Yeah. Yeah. You know, obviously, the the ranges are you know you know, as long as it's under 180, it's fine Mhmm. You know, from their perspective.
So that's not what we wanted to see. So we were kind of we knew that he needed to be on insulin, but we were not really pushing for it. But, I mean, that was taken out of, you know, we we the decision was made for us.
Then.
And by February, he they just recommended point five units. We were doing a lot of walking by that stage. So Felix was walking
Guys, he's gonna walk right off that island if you're not careful.
Oh, I I tell you what. I tell you what. I I I agree with you. I there were nights that he'd just go off into the night and just walk and walk and walk. And so that wasn't I mean, it was great for his health.
It wasn't so great for his mental health.
No. For sure. That's the part I'm hearing is that he was like, the waiting and the and the wondering and the not knowing wasn't good for him. My question here around the anxiety is, did the addition of insulin lower his anxiety?
No. It
hasn't it hasn't touched that at all.
Starting Novo Rapid — and dosing their own way46:47
So or I think what we were what we were really good in doing, and this team, the hospital team was really good in doing, was that he didn't the the waiting for the insulin, he didn't really know about, so it wasn't he wasn't anxious about starting insulin or not going on insulin. But we thought he would be. He didn't really think he's he's a think in the moment sort of person. So we knew he would be, but he wasn't re he was anxious about his numbers, but that anxiety wasn't caused by expectations by anybody. They were just his own expectations on himself.
I was So
I was more wondering about did, like, bring his blood sugar down, creating more stability, did that help him at all? But with
Well, what happened was that so we were told point five units anytime he goes over one one eighty. So which is very, very, very conservative. Not what we want to do. We went to a cafe that we go to every Saturday after he he does a class on Saturdays in the morning. Mhmm.
And we gave point five. We waited until his figures started going down, which took a long time. It was forty five minutes, and then he ate. Mhmm. And we saw and he had two toasts, eggs, avocado, and a smoothie with honey in it.
And started going up, started going up, and then we started we ended up giving him five units all up in small doses. We did not tell the hospital. At that stage, we did, and it was great.
Yep. You call him you should call him up and say, hey. Listen. We listened to a podcaster in America instead of you. That would've that's that was your concern.
Right? You didn't wanna tell them, I'm making decisions. This is where I'm getting my information from, and I'm not listening to you anymore. Like, that that seems why is that uncomfortable for you?
That's no. That that's kind of true. They had, at this stage, developed a really healthy respect for both Nigel and I.
Then then why
because
Why did you not wanna tell them?
Because I remember when we started talking about NovoRapid and I started talking about, oh, what about protein? What about, you know
Mhmm.
Splitting doses? They just looked at me as if I had
They're like, hey. Listen. We don't listen to the podcast. We don't know what you're talking about.
No. I they I I worked out later that they obviously understood, and they they knew. They kind of have quite a bit of knowledge. It's just that they're not used to someone who hasn't even been given a script for
I see.
For insulin Mhmm. Knowing that because the the we actually ended up after having started insulin, having education, and they apologised profusely throughout that education session because it was pre recorded and it was just how to count carbs. I'd been counting carbs since the day that I had to do the first blood prick. I was writing down his food diary, and I was saying how many carbs were in it. And the dietitian actually asked me because sometimes we had multidisciplinary meetings, and she asked me, well, how do you know that the carbs are, you know, 73.2?
And I said, because I cook at home, and I've measured everything. That that was initially. Mhmm. And so I know I'm not not re or I'm reading it from a pack. I mean, I know how to read.
You know, it's not it's not rocket science, really. So so fairly early on, we were giving him insulin as he needed rather than as had been recommended as a start. Yeah. So and like I think I said before, I wasn't comfortable telling the hospital. Nigel suggested that because we were going to have a long term relationship with the hospital that I'd be more open.
And I finally was, and they were absolutely fine Yeah. With it, which they should have been because they were seeing better con well, what appeared to be better control
Right. Well, the truth
at least not worse control.
Yeah. I think the truth is is that you have to be open and honest. And if it doesn't work out, it's just then like any other relationship. If it doesn't work out, then you'll have to find a new relationship. But if it but Mhmm.
The the alternative of you sitting around and worrying and doing things and not saying anything and the unspoken stuff, like, this is good advice for any relationship you have. It's just bad. It doesn't it doesn't lead to anything good. So just say it, and we'll see what happens next. But it's gotta be better than what's happening now if you're if you're hiding.
I That's true.
Yeah. It's really awesome.
So true.
Also, not not can I say Nigel's the unsung hero in all this? He's very levelheaded. Why is that?
He is very levelheaded.
Yeah.
I'm not sure. We balance each other out.
Protector mode, not tears52:13
Can I ask you, are you anxious? You said your mom was, but you're not?
I think I'm an a type personality. Oh. So it's quite funny. What I noticed about me, when Felix was first diagnosis came, you know, it's a strange word for us because it was always for a long time, it was we think he has. We think he has.
We think he has. But I remember, like, on our second or third visit to the hospital, I saw a little child who had a CGM on, and I cried, like a a baby, and I cried. And Nigel said to me, but you don't you've never cried about Felix. And I and it's true. I actually just went into protector mode Yeah.
Into I've got homework to do. I need to make this transition in his life as I need to protect him. I need to give him agency. He will have this burden for the rest of his life, and I want to help him now so that he can live his teenage years. You know, he can just have have just a carefree as as far as he can, you know, carefree teenage life.
But what did happen with the increase so we became quite obsessed with maintaining excellent control, and with that meant quite a few he wasn't on a pump at this stage, so staying up during the night when, you know, his Levemir wasn't working and giving additional NovoRapid until we'd get his Levemir right. As things progressed and Felix experienced his first low, his anxiety increased. Mhmm. So his first low was a bit unfortunate. He was playing trumpet.
The first low, and the fear that followed54:22
He was in trumpet lessons. So and he came out feeling quite dizzy, and I thought he just had too long a lesson. And his blood sugar level wasn't that low. It was just below three. It was 2.9, which is I am not sure.
I should have written this down. 2Point9 is 18. 52 Mhmm. Point two. But he felt it.
And from that day on, he became very anxious about going low and extremely ambivalent about being high. So it was difficult.
It's it's switch right away. He was like, oh, I don't wanna be low again. Yeah.
Yes. He made that switch straight away. So, basically, what ended up happening as we increased as we became more comfortable with using insulin, which we were pretty much straight away, and, you know, we we started increasing amounts of Nova Rapid particularly to get his mealtimes, you know, his his post mealtime pies level. He started becoming really anxious. He started not eating at school, so he didn't want to bolus at school Mhmm.
Because that would mean that he could be susceptible to a low, and he didn't trust the school to deal with it. He was worried about catching a bus. What if he went low on a bus? You know, he'd read somewhere that a type one diabetic had been mistaken as being drunk or drug affected, and he was scared that people wouldn't realize. We started sleeping with him because he was scared at night.
Oh gosh.
He wouldn't go to birthday parties. He his life just spiraled down. He was too scared to go to birth birthday parties when we'd accompany him. He'd eat junk because he's impulsive as well. And then he'd be high, and we'd have to take him home because he didn't wanna be injected there.
He started pretending to inject a certain amount of insulin and not inject it. So we started to get into those sorts of behaviors. He started eating less than he would say he would eat so that he would Yeah. Not go low.
Savannah, I wouldn't normally do this because we're because I'm time crunched. I wanna ask you, you've gotten through that stuff. How did you get through it, or how did he get through it? Or is it still happening?
No. It's not still happening. So if we go back if we're time crunched, I may have to go back to the beginning because we have a bit of a twist.
The twist: chasing MODY57:19
Go ahead.
So so from the beginning, he was told that the presentation looked different than expected, that he was an anomaly, he was atypical. So I really started questioning that, and I started looking at what it could be, other than diabetes, other than type one, and there wasn't much. Most of what it could be was almost more you know, it was life limiting. It was worse than type one could ever be. Mhmm.
But we I did stumble across Modi. So you've probably heard of Modi.
Sure. Of course.
Yep. So we did stumble across Modi, but, you know, Nigel, normally being level headed, and he was even then, he was saying, you're ridiculous. You're just wishing it away. It can't. It couldn't possibly be.
When we went to see that fairly early on, when we went to see that private endocrinologist, He just happened to be the head of the hospital that we were at and had an interest in Modi too. So he said to us, well, you know, given the fact that your because we've got a lot of diabetes in our family, it's all type two from what we can see. Given your history, you know, that there isn't any type one. There is autoimmune given the fact that by the time that we'd got to him, we had got the antibody testing back, but only half of it, three or more than half, three antibodies negative, the other two were pending. He said it could possibly be MODY two.
We don't know. It could possibly be, but it's looking possibly like it's type one because we're seeing an evolving picture of higher blood sugar levels.
Yeah.
We go back to him when we get that positive zinc transporter antibody, and he says, oh, look. It looks like type one. Right. But it's an unusual antibody to be positive. At that time, which is kind of quite strange, it was also the time that his C peptides had gone down, and so he and so had his insulin.
So it looked like it was type one. It looked exactly like it was type one. But the small print on the pathology said if you're taking biotin, it could reduce those, and Felix had been taking biotin. So in my mind, I'm just thinking, I think I'm going crazy, but could it be Modi two or any sort of Modi? Some Modis are better than others in terms of, you know, I suppose, how you treat them.
And then I thought, oh, Bitin. He's taking Bitin. Could that be but I wasn't exactly sure. What we had done, though, initially was that we had requested genetic testing at the hospital. Mhmm.
The hospital the genetics department had not approved it because his case looked like with the positive antibody, it started it started to look like type one. So they had not approved it. Our doctor had said but they had referred us on to a genetic genetics department at a nearby hospital who basically said, we have to get sign off by your endocrinologist. So we went back to the endocrinologist who said, oh, no. Look.
We'll do it here. You know, I don't wanna do sign off because sign off involved writing a 25 page report almost. You know, she had to fill in 25 pages of why. We got sign off at the end of twenty twenty four, as in we provided consent for genetic testing. We were told the reason why an endocrinologist said that she would do it was to put it at rest because we had brought it up so many times, and she thought it was time for Felix to get to to start pump therapy.
So and we were kind of, oh, look. It could be. Could it not be? It may be. It's he's still an anomaly.
We're we're just being told he's an anomaly. His his blood sugar levels are never that bad, even when we can't control them because he's eating when he shouldn't be because he's trying to keep himself at 180. His a one c is always six point it's higher than 6.4. It's usually 5.7 to 6.2. You know, it seems strange that whatever we do, we can't really budge that.
And so he got tested, but because it wasn't expedited because everyone thought that he had type one. We thought he had type one. It was just to to really just to please us. Really just to, I think, shut us up. Mhmm.
Yeah. Really. So what happened at the end of last year when we had the meeting when we were going to talk about pump therapy, we were told that genetic testing had come back and that he was positive Oh. For Modi two.
Yep. See? You're not you're yeah. You're yeah. Look at you.
You were right. How about that? I'll be damned. Savannah, where did it go?
But by that stage, we had we had forgotten.
Positive for MODY 2 — to be continued1:03:12
We had
actually we had actually, approved the testing the day before Christmas a year before, and this was August, September the year after. So what we had done is really not being happy with going on a pump because we thought that Felix would manipulate it to get give less insulin
Mhmm.
Because that's what he was doing with the with the needles, with the injections. He was just manipulating everything, and we were worried that he'd do that. It'd be easier for him to do that with a pump. And so so we get to a stage where we find out we were all surprised. We were as surprised as they were because we had convinced ourselves that So he had type then Nigel being so he is definitely the hero in this because I'm the one that brought it up in the first place, and he thought I was crazy.
But by this stage, by the time that he was diagnosed with type with MODY two, Nigel then took the research role over. I was absolutely I was up all night with Felix. He was anxious. Mum didn't know day from night. She was up all night.
It was like I had two
newborns. Yeah.
Like, I was absolutely exhausted. I couldn't so Nigel started researching. What he what he found was that type one like, a lot of Modi two people have misdiagnosed as type one or type two. And he thought, well, why how could you be diagnosed with type one for a long period of time? If you're diagnosed with type one for a long period of time, you must be able to take a lot of insulin in.
You know? It must look like type one, but it may could be moody too. Do you understand what I'm saying?
Like I do. Yeah. But, Siobhan, I'm so stuck on time. I I wanna
Yep.
Can I just get you to come back and finish this story another time? Would you be able to do that? I'm so sorry. Like definitely be able Would you? Okay.
Not a problem.
No. No. Okay. So listen. I'm gonna alright.
Let me just say to everybody, I'm gonna talk to her now and get this the rest of this fit, scheduled right now. So hold on. And with the next time you hear us talking, it'll be in the future. So thank you very much. Hold on one second for me.
Okay?
Okay.
Two. Same app, same show, don't you fret.
The best parts come and you're not done yet.
Same app, same show, don't you fret. The best parts come
and you're not done yet.
Part two. Right there in your app. Go on. We'll wait. Same app, same show.
Don't you fret.
The best parts come and you're not done yet.
Same app, same show. Don't you fret. The best parts come
and you're not done yet.
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#1925 Blue Shoes
Blue Shoes
Diagnosed in DKA at 18 in Mexico, told she might never have kids, Tzinnia spent thirteen years on NPH before modern tools. Now in Nebraska with twins and an 85% time in range.
Jump to a moment
- A young doctor recognized it by smell. Sent home once from a full ER and told she was probably hungover, Tzinnia was in DKA and, her family was warned, might not survive the night. A shift-change doctor caught the ketones and started insulin.
- Thirteen years on NPH and regular. Diagnosed in 2006 in Mexico, she ran a roughly 6.7 A1c on old insulins — sitting up until 3 a.m. nightly for a year to catch lows — before switching to Lantus, then a Freestyle sensor in 2019, and eventually Omnipod 5 and Dexcom.
- “Nobody told me what the blue shoes did.” People mentioned newer insulin but never explained the benefit, so she stuck with what worked. Her takeaway for clinicians: don’t just offer an option, explain how it works — and for patients, ask more questions.
- Told she might never have kids — she has identical twins. A natural twin pregnancy she carried with a 4.9 A1c. She wants teenagers newly diagnosed to hear that the scary predictions about kids, travel, and drinking don’t have to define the life ahead.
- Today: 85% time in range, 75–160. Now in Nebraska, married, working, raising two 15-year-olds (both TrialNet-negative), Tzinnia credits understanding the condition more than any single device — and still calls the CGM the upgrade that changed everything.
- T1D Exchange Registry — US residents 18+ with type 1 can complete the survey and help move T1D research forward.
- TrialNet — Free risk screening for relatives of people with type 1 — the antibody testing Tzinnia uses for her twins.
- Bold Beginnings series — Scott and Jenny Smith's series for the newly diagnosed — straightforward answers that cut through the jargon.
Every word of the conversation
Hello, friends. Welcome back to the juice box podcast. Guys, head over to the t1dexchange for me and take their survey. T1dexchange.org/juicebox. Doing so will help to support type one diabetes research.
It's easy for you to do, and there may be even a little bit of something you get out of it. Go check it out. If you're over 18, have type one diabetes, and a US resident, head to t1dexchange.org/juicebox and complete the survey. 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.
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That's it. And here's a little bonus for you. How about that there's no limit on how many friends and family you can share your data with with the Eversense now app? Eversensecgm.com/juicebox. Now let's talk about Tandem Mobi, the impressively small insulin pump.
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Go check them out at touchedbytype1.org and see what they're up to.
Diagnosed in Mexico at 182:32
I'm senior Robertson. I've been living with type one diabetes for the last twenty one years. I was diagnosed in 2006. And, yeah, I was diagnosed in Mexico, so I guess the story could be interesting.
Awesome. How old were you at diagnosis?
I was 18 years old.
Okay. Wait. Did you say 21 years? Yep. So you're 39?
On the forties right now.
No. You're 39. Right?
Yes.
Yeah. Yeah. Yeah. That's how you say it. I'm 39.
Are you married or kids, anything like that?
Yeah. I'm married. I have twins. They are 15 years old, and I have been testing them with the trial net. Thankfully, they've been negative.
No, no marks on
their Okay. No auto any they're not showing any antibodies or anything?
Yeah. No.
Well, that's good news. That's good news. Do you do you have any other autoimmune issues, or do your kids or anybody in your family have, Hashimoto's or celiac or anything like that?
Yeah. Well, my grandma, my mom's mom, she used to have the, skin patches. The name is, like, Vitiligo. I don't know the name
of Yeah. Vitiligo. Yep.
Yep. That's what she had. And, well, when I when I knew this was an autoimmune disease, I understood better where it came from.
Yeah. You start figuring it out. Right? I mean so no but no type one diabetes in your life other than you?
No. Just me. And I hope I'm the only black sheep.
Well, that doesn't make you the black sheep, does it? No. Not really. Of course not. No.
But I hear what you're saying. You don't want anybody else going through this if they don't have to. Right?
Right.
Nosebleeds, weight loss, and a missed cold4:26
Yeah. Right. What, what precipitated your diagnosis? What what did you notice? You know, how did you handle it?
How do I handle it right now?
No. No. No. Back when you were diagnosed, how what what was the first thing that made you think, like, oh, I'm something's wrong?
So I was losing a lot of weight. You know? All the DKA symptoms, I was actually in DKA when they they diagnosed me. I was feeling so bad. I had my heart rate was super fast, and I had, like, hypothermia.
And my mom took me to the hospital. Well, she first took me with my uncle. So my uncle, he's a doctor, just like a family doctor. Mhmm. And he tried he tried taking my blood pressure, and he couldn't.
Like, the the he had this electric, blood pressure thing machine, and it didn't work. So he thought it was the battery, and he changed the battery, and it was not working at all.
Is it because was your pressure so low it was having trouble reading it?
Yes.
Oh, wow.
Yeah. And I was throwing up that day so bad. I couldn't stop. I couldn't eat anything. Yeah.
Like I say, my heart rate was super high. Like, it was pumping so fast. I feel that I couldn't breathe. Mhmm. And then I had the hypothermia.
I was so so cold. Really? Yeah. I was in front of the of the heater, and I could not get hot. Like, my body was not warm.
How long had you
I was literally dying.
Yeah. Yeah. No. No. I was gonna say, you know what it's like to try to die.
So what's the, how long was that going on for? Like, when you look back, how long do you think you were not making your own insulin at that?
So losing weight, that was for a couple of months. But that was I kinda had, like, a cold before. Mhmm. And I did my mom took me to the doctor, and I told him that I was having, like my nose was bleeding for a couple of days. So he was like, okay.
We're gonna send you some lab work, and we'll see. You probably are you probably are losing weight because you, you know, when you hit puberty, you right now, you're in, you know, the teenage years, and some people get fat, some people, you know, lose weight. And I was like, oh, okay.
You're like, what about the my nose has been bleeding for four days. What about that? Yeah.
So he send the the the blood work, but they didn't take the the the blood that day.
Okay.
So I had to schedule that. And that was that was going to be, like, a week after. And before that came up, I ended up in the hospital
Yeah.
With the PA. So I had all those symptoms. My mom took me with my uncle. My my uncle was like, you know what? This is not good.
He told my mom to rush me to the ER. We went there. So in Mexico, have private insurance or you have kinda like the universal or public insurance Mhmm. From the government, which at that time I didn't have private insurance. So they took me there.
And it the hospital was, like, full. The emergency room was full. The doctor who was assigned to me kinda told my mom, like, has she been going out? Like, has she been with her friends and drinking and stuff like that? And my mom was like, no.
She's not been going out. She's been sick for the last couple of weeks. Yeah. And he was like, kinda, like, telling my mom, like, if I was using rocks.
Oh, she's probably hungover or That's what that's Yeah. Okay.
Exactly. So my mom was like, no. I don't think so. Anyways, he connect me and they gave me, oxygen. They put some oxygen.
Mhmm. And then
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The doctor who smelled DKA10:31
He put an IV, which, you know, the regular IV has glucose. And I don't remember the rest of the that day. Everything that I'm gonna say is the story that my mom told me.
Wow. Everything after the IV is retold to you because you have no recollection of it at all? Mhmm. Wow. That's great.
I wanna hear. What what did your mom say happened?
So they sent me back home. She was like, she will she will be fine. Take her home. They took me back home. I went to sleep.
I peed my pants. I was I I was in the closet, so I have my, you know, the walk in closet in my room. Yeah. And I was trying to go to the bathroom, but I was making noises. Like like, I was like, not feeling good.
So my mom heard that she went to to look for me, and she found me in the closet peeing my pants.
Your mom was probably like, this kid is she's probably like, this kid is on drugs. Yeah. She she loves you.
Like, this is not good at all. She was like, why are you doing? And I was like, mom, close the door. I'm in the bathroom. Oh.
I say.
My gosh.
So she was like, no. This is this is bad. This is not good. So she called my uncle again, and she was like, hey. This is going on.
They sent her back. He was like, come come pick me up. I'll go with you guys.
So Can I ask you a question real quick? Can yeah. How do you say how do you say in the closet in Spanish? I guarantee that's what she said to your uncle. Yeah.
Guarantee it. Yeah. Yeah. She's peeing her pants in the closet. She's like, listen.
She doesn't know what is going on.
Shit's upside down over here. Okay? My god. I'm sorry.
What did you And I do not remember.
Well, thank god thank god you don't remember, honestly. Okay. You don't who needs to carry that with him? So Right. Nobody.
Yeah. Yeah. I'm sorry. I'm sorry. So your uncle go ahead.
Yeah. He was like, pick me up. We will go there together. So we went back there. All the ER beds were full.
My uncle took someone from the bed and put me there because I could not walk at that at that point.
I could not walk. Okay.
“Call the family — she may not make it”12:47
So, thankfully, it was kinda like the shift change for for the doctors. So there was a new doctor getting in the ER. So this was a young doctor. He only what he did was he smelled me. Yeah.
And he asked my mom, is she diabetic? And my mom was like, what? Yeah. Is she diabetic? And she say, how is that?
She's diabetic. And he was like, yeah. Is she being diagnosed as a diabetic? And my mom was like, no. No.
No. She's she's not diabetic. And he was like, well, she is. And I turned and they put the IVs and everything. They were I do remember they were I don't know.
How can I say it? They were, like, ripping off my clothes with scissors.
Mhmm.
And I was so worried because I was wearing one of my best friend's hoodies. And I was like, no. In my mind. Right? I was like saying to myself, oh my gosh.
She gonna get mad. This is not mine.
You can't you couldn't speak out loud. That you remember that. You remember that from this I remember. Yeah.
I do remember looking on my arm and the scissors. They were couldn't ripping off my hoodie, and I was like, this is not mine.
Not my top. It's not my top.
But I yeah. I I could not say anything. Sure. You know?
Well, yeah, you were trying really hard to die, it sounds like. What was your blood sugar? What was your blood sugar?
I I never knew. No. I never knew. I don't even know if they did peptide like, the c peptide test. So I don't know.
I really don't know. So when they last came back, they told my mom she's diabetic for sure. And they started using insulin, and the insulin they started using was NPH insulin
Mhmm.
At that time. So I spent three days there. The first night, they told my mom that, she should call all my friends and family because they they were thinking that I was not going to make it.
No kidding. Yeah. Tell me again, you were 18, 19?
18.
18. And your mom's got a call around the family, say, come see Cindy. She she might die.
Yes. Wow. Yeah. It was my second semester, in college. So I didn't go, for, like, a month.
Some of the teachers were really nice and understood what was going on, but some others didn't care and just had to take that class again, you know, the test
Yeah.
As a second chance. And
yeah. Wow.
Anyways, yeah, I spent three days there in the ICU. And then
When did you kinda become in those three days, were you with it again, or did it take you how much time did it take you to kinda get your faculties and and your wits about you?
Well, I, like, I don't I really don't know.
So I
I do remember I think it it was the next day or on the second day that my best friend went to see me, and she told me it was a shock because they were, you know, they were pricking my fingers, the nurses, to check on my blood sugar, but they leave me like, my finger was still bleeding a little bit. So I was scratching my face, and my best friend say that when she got inside of the room, she saw, like, blood on my face because it was from my fingers, but I was just scratching my face with my fingers.
Yeah. Let's say that you weren't you weren't with it by then, let's say. Yes. Exactly. Okay.
And and so she was like, it was a shock. I was she would just say she was scared. But
Young girls do. You know? I mean, think about that. Really, put yourself in that position. You're going to the hospital to visit your friend who might be dying, and there's blood all over their face, and she's incoherent.
Right. Because my mom had to tell them, like, hey. I need you to come see her because we don't know if she gonna make it.
Boy, is that something else? That's scary. How'd your mom, how did that impact your mom?
I'm gonna be very honest. She never she never I never saw her crying.
Okay.
She was always so strong.
Did it make her extra protective of you, do you think, after that?
A little bit. Not in a bad way. I mean, they were always, like, very protective family with me and my my siblings, but I do remember. And this is a funny story. We went to Las Vegas two years after my diagnosis.
And, you know, the stratosphere, they have these roller coaster stuff. And my mom was like, no. Don't do it. Don't do it because your blood sugar is gonna go high and stuff. And I'm like, calm down.
I'm gonna be fine. So I did it. And just for her peace of mind, I checked my blood sugar after. And I was like, I'm 120. I'm fine.
I can do it again.
I can do it again.
She was like the the those were the kind of things she was worried about. You know? Like
Hey. You said Yeah. When they gave when you were diagnosed, they gave you NPH. How long did you use, like, NPH and regular for? Where did you where did you use NPH and baby?
Thirteen years on NPH18:22
I'm sorry. What was your faster acting insulin? Do you remember?
Did not have one until until they sent me to a specialist.
Oh, wait a minute. Are you gonna tell me they thought you were a type two?
I think so because they also gave me a, like, a eating plan that was based on 2,000 calorie.
Oh, I oh oh, okay.
Told me we were using insulin to cover carbs. Okay?
How long did that go on
that was, like, two months.
Okay.
And then they sent me to the specialist, and I was like, okay. This is not enough. I was running in the four hundreds.
And For two months?
Yeah. Not not not all day. You know?
I'm 300,
300, 200, 300. You know? So they say they sent me to the specialist, and then she was like, well, you need to use fast acting insulin. And she gave me at that time was a Humalog Lispro.
Yeah.
And she was like, and you can even combine the NPH with the with the to mix it. I could mix the NPH with the Humalog in the morning and at night when I was taking dinner.
That's what you
were doing. But nobody told me about pre prevolous, you know, like, nobody told me about it.
I mean, that that's a weird that's a kind of a weird setup. How long did you do that for, the the Humalog and the Miles per hour?
Until 2019.
Wait. Did you say 2019?
Correct.
Wait. Hold on a second. It's 2026 now. That's seven years ago.
Right.
Uh-huh.
It took so long. I mean, I was just doing good with it. I I always stay under you know, my a one c was around six, seven. Six, seven.
Were you low much?
At night. Yes. I actually kinda, like, had a period of time, and that was when I went to another specialist because I was like, okay. This insulin is not is not good for me. Like Mhmm.
I knew at 3AM I was awake until 3AM because I knew I was going to have a load.
Oh, gosh. Every every night every night you'd sit up, Zenia?
Every night. Yeah. For and that lasted, like, a complete year.
Oh my god. Like
yeah. So I went with the new specialist, and he was like, yeah. We need to change you. I don't know why you are taking this insulin. Like, this is the oldest thing in Earth.
And he changed me to Lantus, and that was awesome. That started working great. Obviously, I could not mix it anymore.
Yeah. But you did that for how many years did you do that? How many years did you do that for?
The NPH and the Humalog was for thirteen years.
Oh my god. How does no one mention are you in Mexico the whole time?
Yes.
Okay. Nobody ever says to you, hey. We have a more modern insulin. It's called Lantus. Would you like to try it?
I knew about it, but you know what? I was like, yeah. What I mean, this is working. And I was still going to the public health system, hospitals and doctors and stuff. And they were like, oh, you're doing really good.
Because I was really I was doing good. Thankfully, I I can say right now that I don't have any other complication. Yeah. Knock on wood. No.
But I'll knock on it for you. There you go. So so it was working, and somebody did mention Lantus, but you thought, well, this is working. It's I'm not gonna change.
Yeah. Okay. Until I was like, okay. This this is not I need I need to, you know, do something else.
What pushed
also start using the because I was, you know, MDI, and I was not using any sensor
until 2019. I gotta be honest with you. If you were on Miles per hour, but you had a a CGM, I would have been like, I I don't know how that happened. So so you're without us how how many times a day do you think you tested for that time?
Oh, I was testing, like, every every time I cool. I was spending a lot on test strips. Like,
yeah. You think you were testing 10 times a day?
Easy. Yeah. Even more.
Yeah. Yeah. Wow. My gosh. So but when you changed, were you in Mexico still when they said Lantus and CGMs, or had you moved by then?
Okay. So in Mexico, they released the the freestyle in Mhmm. I think 02/2019, and that's when I switched to it. Okay. It was the fourteen days, and it was not it was like the flash one where you had to
Hold the
scan it with your phone.
Yeah. Yeah. Yeah. To scan it.
Yeah. Mhmm.
Yeah. That was fun. Well, I guess it was better than nothing. You were probably thrilled you could stop testing your blood sugar all that time.
Oh, it was fantastic.
Yeah. No kidding.
I was like, I don't need to be pricking my fingers anymore.
Right. Like, what a what an upgrade for you. Right?
Yes.
Yeah. Yeah. Okay. Alright. Well, I mean, thank god it you don't have any, you know, long term complications and you and you get modernized, you're moving along.
Is there a big change for you of a serious, I don't know, upgrade having moved to the Lantus? And, I am assuming your Lantus and Humalog and then a CGM, or is it just like, oh, I still do a good job, but it's easier? Like, what's the what's the viewpoint? No? No.
Modernizing: Freestyle, Omnipod 5, Dexcom24:04
No. Definitely, it's been a huge change. You know, I stay well, right now, I'm using the Omnipod and the Dexcom seven.
Okay.
But, yeah, it definitely improved improved when I started using the the the Freestyle and then when I moved to the pens and then I moved to the Omnipod. So it's been great.
A one c go down or just the amount of times you have to touch diabetes got better?
Both. Both. My time on range and also my a one c went down a lot.
What's your time in range? Do you know?
Right now, it's 85, 86%.
That's awesome. What what range are you measuring?
I go from 75 to one sixty.
75 to one sixty, 85% of the time? Yeah. Good for you. And that's Omnipod five or Dash?
The five.
Five. Wow. Awesome. Did you get the, the update for the new 100 target?
Oh, yes. I did, and I immediately changed it.
Good for you. I people are are enjoying it a lot. I hope it I hope it shows something. I mean, I guess maybe you're a good person to ask, but you've had it for a few days, a week.
Yeah. It's been a couple of days. What I'm having trouble right now is with my DexCom seven is the fifteen days, and it was crazy. Like, last week last weekend? Yeah.
I think it was last weekend, like a week like a week ago.
Okay.
We went out, and we went to eat sushi, and I was feeling fine. And we went to a bar next to the restaurant, and I was like, okay. I'm gonna, you know, I'm gonna prepare for it. Because I knew I was a little a little high. Mhmm.
But I was like, okay. I'm gonna take a couple of of units, and I'll wait for my drink because I know my drink was going to have a little bit of sugar. Mhmm. And I was like, you know, it doesn't match what it's saying. So my sensor said I was hitting the three hundreds, and I was like, no.
No. No. No. No. Thankfully, I have my my glucose meter with me, and I check on my finger, and I was actually two hundred and ten.
And you had taken a lot of insulin?
Yes. And I was like, oh. So my friend went to the to the bar, and she was like, hi. Can you give me a doctor Pepper? Was like, doctor Pepper?
Yes. I like that one.
I'll take that one. You didn't get low, though. You you're able to figure it out. But you're saying that your sensor was saying 300 when you were more like two ten.
Yeah. Which is, huge.
Is that a thing you didn't experience with the g seven ten day?
No. No. Okay. Neither with the g six when I was using the g six. So
Okay. Arden is using her Arden's using her first fifteen day right now. So, I mean, so far so far so good. It's been it's been okay. I think we're, like, four or five days into it maybe.
But we didn't mean to switch. We had some of the other g sevens still, but I think she sent her boyfriend to the drawer to get something, and he grabbed one of the new ones by mistake, and she just popped it on. So, I guess we're, I I guess we're gonna ride it out and see and then probably go back to the others, use them up, and then switch over for the rest of the way.
Right.
Yeah.
Time to try it.
Yeah. What made you move to, The US, and where'd you move about where'd you move to?
Nebraska, football, and a stadium low27:37
Yeah. Well, I moved here in two thousand twenty one because I got married, and my husband is from here. So, yeah, I'm I'm now here, and and it was a a fun experience, actually, the first time I came here to visit his family and meet them all. Because here in Nebraska, you know, it's a big thing, the college football. And
You're in Nebraska. Wait. You're in Nebraska now? That's hilarious. I'm in Nebraska.
Kinda hilarious, isn't it? Yeah. Yeah. Yeah.
Yeah. So he was so excited. He was like, okay. For my birthday, we're gonna have the tailgate, and it's gonna be the kickoff from today.
City. Gotta tell you.
And I was like, oh
You're you're you're kinda fair complected. You must you must confuse the hell out of those people.
I know.
Yeah. Yeah. I'm sorry, guys.
But it is what it is, and I'm here now.
They must they must hear your accent and be like, I don't know what's happening.
Yeah. They are like, what?
I'm sorry. What what about the I I I confused. What about the college football? What were you saying?
So the first time I came to you is my husband when we were still in our relationship. Mhmm. He was so excited. It was his birthday, the kickoff of the college football, and we had tickets for that game. Mhmm.
And so it was going to be a long day. I had everything with me. I had, you know, a couple of juices and snacks and everything if I have a low. But at that time, I was still MDI and using my finger Yeah. To check my blood sugar.
So we went there. We were tailgating. And, obviously, I mean, we were drinking. Not a whole lot. I was always very, you know, like, to not be not be, like, over drinking because it scares me.
It actually gives me a little bit of anxiety that that point where you are fine and where you are not and then you don't have control of yourself, and I don't know if I'm gonna go low. So that's I I try I try not to cross that point because of that. And it was time to go to the stadium. So we start walking, and I was like, I'm having a terrible low. I told my husband, I can't keep walking anymore.
I can't. I'm gonna die right now. I I'm gonna die. I'm gonna die here. He was like, no.
No. No. I'm gonna get you something. He runs to get me something. You know, it was so packed.
All the people was walking to get into the stadium. Mhmm. And he had to call 911 and the ambulance. And so the ambulance got there. And I don't know this lady.
If she's listened to to this podcast, thank you so much for giving me your Pepsi. I think it was a Pepsi or a Coke. I don't know her. I just drink it.
Yeah.
And I start throwing up. I when I go low very fast, I throw up. So I don't know if there's more people who have that and happen to them the same way it happens to me, but it's just something that I
You if you drop if you drop
when I'm having trouble.
So you're telling me if you drop quickly, you vomit? Yes. Do you get nauseous?
Yeah. Yes.
Yeah. Okay. Alright. And that so you know if you start having that
recognize blows.
Yeah. You start having that feeling. You think, oh, I'm getting low.
Yes.
Okay. Okay. So he's got a call, but are you just dating at that point?
Yes. It was the first time I came to Nebraska.
You're like, he's gonna take me back to Mexico and leave me there. Yeah. Yeah. Well,
he was so worried. Like, the next day after everything this happened, he was like, oh my gosh. I was so scared, but I was going to tell your parents. And, like, yeah. Your your daughter came to visit me, and now, you know, she's dead.
You know? Like, he was so worried. Sorry. I killed your daughter at the at the Nebraska game. Yeah.
Yeah. Exactly. Well, the good thing is that, there was a storm, so the Nebraska game never happened. So it was fine. We didn't, you know
Wait a minute. No. I I know this is apropos of nothing, but there was a storm so strong it ended a it made a college football game get postponed?
Yes. That's crazy. The first the first game of the season and the first game for Scott Frost. Frost is his last name.
Okay.
He was the head coach. Yeah. Yeah.
And and they can't they they rescheduled a college football. Football doesn't get rescheduled for weather very often.
That's Well, it did that day.
That day. Mel, that's good. Did you get to go to the game then? Yeah. Yeah.
See, it all worked out. Maybe they post standard for you there. Like, you know, Zinni is out there. She's throwing up and dizzy and everything. Doing very well.
Yeah. Yeah. Yeah. Let's make sure she sees her first game. Well, what did did they treat you on the scene and then leave you there?
You did did you go to the hospital?
No. I I went to the hospital, and they put some IV and everything, and I was fine. Actually, they treat me on the ambulance. They gave me a couple of, you know, those gel packages Mhmm. With glucose.
Yeah. And when I got to the hospital, I was fine, but they still wanted to make sure that I was okay. So yeah.
They got you on the hook now for the bill. They they wanna they wanna finish up, get you they wanna get all the money. Yeah. Yeah. I hear what you're saying.
Well, does this stuff happen to you often, the passing out?
No. No. No. Like I say, it was totally an accident because we ate very early, and I just I didn't have in my mind how much of walking it was. Yeah.
And, you know, I was just sitting there talking with people. Everybody was so happy to meet me. You know? Like, oh, this girl, my best friend's girlfriend from Mexico.
Yeah. Right. No. It's exciting.
We were talking and talking. I sat down. I start feeling bad. And then my my now husband, he was like, hey. We need to go to the to the stadium.
And I was like, okay. I start walking, and I was like, I can I can keep walking? Like, I'm I'm dropping so fast. And, yeah, that's what happened.
How long ago how long ago was
that? That was 2018.
2018. Right before you get a pump?
Yeah. Well, I I think I got my pump. The first time I used it was in 2022.
Oh, wow. Okay. Mhmm. Wow. Jeez.
Why she came on — for the teenagers34:22
You've had a whole little life here around this. Made you what made you wanna come on the podcast? Like, what what got you to reach out? Because it's the big deal. People don't like you said before we started recording, I've never done this before.
I'm a little nervous. Like, what makes you follow through and actually do it?
I think just sharing the experience, you know, especially when you are like, I think I would like more teenagers to listen to this because it was hard for me being diagnosed when I was a teenager in Mexico. You know, the diabetes education there is I hope it is better now, but at the time was very different. And I never met someone with diabetes in Mexico.
Never?
No. I do remember one of my friends told me, like, hey. My neighbor has that thing that you have, and he wears a pump. And I was like, well, that's very far from what I can get right now. And I think he was getting a pump in The United States or I don't know where.
Like, he has to travel to get it or something like that.
Had it worked out somehow.
I was like, oh, okay.
So not a person you even met, just a person down the street that somebody knows about, and that's it. And so so Yes. If a teen heard this, what would you hope that they took from your story?
Well, you know, you will get there. You will learn about life. And I know they get so worried about especially women because one of the things they told me is like, oh, you're probably not gonna be able to have kids. Oh. Well, guess what?
I have I have twins, actually.
Made them both at the same time. What do think of that?
Yeah.
So So do you think girls get told maybe you won't be able to have a baby, and it's scary, that kind of stuff?
Yeah. That's scary. You know? Like, they tell you all the complications complications about about being pregnant and having diabetes. Mhmm.
And and then they tell you about, you know, you wanted to start your life. You started becoming an adult, and you want to start drinking or just enjoying a drink, you know, like, or traveling. You know? It was so scary for me. Like, how am I gonna travel with all this?
What if I don't have enough supplies?
Well, where'd you find the
You'll get there. You can do it.
How how do you how do you think you do.
This is scary.
How do you think you gained all that knowledge to do those things? Because you traveled out of the country. You dated a guy, you know, not from where you're from. You had babies. Like, you got married.
Like, where do you think the is it just practice, or how do you how do you wrap your head around Yeah. How you were able to get this done?
Definitely practice, but also I like to read. I like to read. I like to investigate. You know, like, figure it figure things out. Like, if this is not working, well, what else?
You know? Like, I need to figure Mhmm.
And
find, you know, problem solving. Yeah. So I think and, you know, when you just feel comfortable, comfortable, you you need need to to get get out out of of that that zone. Zone.
Okay. Okay. Yeah.
Just be other things that are better.
Have experiences
happened to me.
Yeah. Yeah. Well, I mean, I I guess whatever doesn't kill you makes you stronger. That kind of an idea. But, also, you don't wanna be in terrible situations.
The blue shoes nobody explained37:32
Do you wish that you would've changed insulin sooner? Do you wish that you would've had access to technology sooner, or are you happy for how your path was?
No. Absolutely. I would have liked switch sooner.
What do you think having been a person who somebody, you know, said Lantus to you, but then you didn't change, like, what is it you should have been more open to hearing when somebody was making suggestions?
I would have liked to hear more like, hey. This will act this way. This is not like, oh, there's another insulin in this one. But how it works. You know?
And maybe I should have done more questions Mhmm. I think.
So you are you telling me that, you know I don't know. You somebody gave you a a red pair of shoes, and then they said, there's blue shoes too. And you said, no. Thanks. I like my red shoes, but they forgot to tell you that the blue shoes make you fly, and they come with a thousand dollar check.
And, like so nobody told you what the benefits were of the thing they were offering you. They just said, would you like blue shoes? And you said, no. I'm good with my red ones.
Exactly.
Like that. Okay. Alright. So Mhmm. Don't just turn to if you're a doctor, don't just turn to somebody and say, hey.
Do you wanna try this? Tell them why maybe they would want to give them some background so they can understand.
Exactly.
Have you have you found the care in America any different than in Mexico?
Yes. It is different. Like I say, I never went to the I I did I did go to, some private appointments, but I never stick to it, you know, like, keep going with those doctors. Maybe because I was just doing good. But here, my endocrinologist, she's also type one.
So I love that because she really understand, you know, how I can feel and all the ups and downs, not only, like, what the book space.
So having a doctor who understands better is helpful, but at the same time, you need to take a little responsibility too and ask more questions if if the information is not being offered?
Exactly.
Yeah. That's one of the things you've learned over time. How do you think that's gonna change you moving forward? I mean, obviously, you have Omnipod five now, but if, you know, Omnipod five comes out with another version or another company says something that you're like, oh, that's interesting. How are you staying, Are you maybe, maybe you're not?
But how are you staying up on what's going on and making decisions about whether or not where you are is good or if you need to change?
Well, definitely following, you know, the the page in Facebook helps to keep updated because sometimes I don't even open my emails. Mhmm. Like, I just get so many emails. We work, and then I have the teen the the the boys are are teenagers right now. So life is busy.
Right? But, you know, following people who can bring more information. I think now with the social media, you can get that information right away.
Kinda keep up a little better.
So being being open to try new things as well. You know? And if it doesn't work, you you can just go back to what what it was working Mhmm. For you. So, yeah, definitely, if if if Omnipod comes with something new, I will definitely try it.
I also I've been looking on other prompts, like, I willing to try something with you know, that is not too blessed or yeah. Right now, I'm good. I also the other thing is, like, insurance. You know, that part of the insurance. Like, if I switch, how will we if it's if I switch, am I gonna do it?
Do I wanna do it? Do I want to spend that money on that, you know, if I'm if I'm doing good right now? It's like you know, there there's a lot of factors that you have to take on
Yep.
Take that decision.
Hope for the Eledon trial41:30
Is there something that you're hopeful about? Like, things you've heard about that you think, well, I can't wait for that to actually happen?
Yeah. I'm very excited about the Elodon trial that they are doing right now. It seems promising. Mhmm. And, yeah, I wish they they could, you know, work on that isolate, act faster, and get it set, more people can get the the trial.
And See where it goes. What would
it I see it very, very, very close. You know? They say five years, and he's been 21. So Yeah. Me, at least.
I know there's people waiting for longer.
Yeah. Yeah. I don't usually ask questions like this, but what would it mean to you if that I don't know. Let's say that procedure just becomes the way things are done. You get type one diabetes.
You go see somebody. They put some islet cells in your liver and give you a anti rejection medication that doesn't cause cancer, hopefully, and then you aren't using insulin anymore. Like, what what do you think that how do you think that fundamentally changes your life?
Well, I think that the first thing will impact is the time. You know? This is time consuming. But I don't know. I mean, just
Time's a pretty good answer.
Taking decisions.
Yeah. Not thinking about it all the time.
Many decisions. Exactly. Yeah. It's like my kids also ask me things like, hey, mom. When is my driver's license appointment?
And I'm like, I cannot keep all of that in my mind. I have enough, but I do have the calendar so you can check-in there.
When is my driver's license appointment? I have diabetes. Leave me alone.
Don't leave me alone. No. I'm I'm pretty good about it, but there's some times that I forget about things too, and I'm like, I don't know. It's just go to your calendar. I have enough things.
You know?
And No. No. I hear you.
Being a mom with twins43:22
Yeah.
How does it impact being a mom other than that, or does it not? And how much of this do you share with your kids? Like, how aware are they of your health and and how it is and what you do?
Well, they are they are amazing. Like, sometimes I'm like, hey. I know you would like to take some of my Sour Patch, but I'm not gonna share with you
because
I'm far from home. And if I need them, you don't want me to die because you are the only one here with me. You gotta figure it out. He's like, no, mommy. It's fine.
The lady
with me.
You're the lady turning Sour Patch Kids into medicine. That's no fun.
Yeah. So Do they No. They're doing good. If I ask them, like, hey. Can you bring me a juice from the fridge?
They would do it.
Right? Know why.
They understand.
Yeah.
Yeah.
Yeah. Could they help you if you had a seizure?
Yes. I know they will be able to help me. Actually they just got the American Red Cross CPR certification and all of that. They are lifeguards. That as well.
Oh, they're they're lifeguards?
They don't freak out.
There's a all I heard all I heard was there's a pool in Nebraska. That I didn't expect at all. But
That that that is is here.
They're life are they identical or fraternal twins?
Identical.
No kidding. What what what's the one thing that helps you tell them apart when you see I mean, I imagine at this point you just know them, but what's the thing about them that is obvious to you?
Well, right now, one of them is using braces and has short hair. That will be the fastest.
That's helpful. Do they have any like, are there any like, what do you see, though, as your as their mom? Is it their eyes? Where do you see it when you look at them? How do you know it's them?
Definitely, their eyes and their voice is different.
Their voice is different. Okay.
Like, if they call me, I know for sure who is it even if I don't see who's calling.
Mhmm. They look more like you or your husband?
Me. Yeah. They are totally my my dad Wow. That's so my brother.
That's so cool. Isn't that nice? How about your husband now? Does he have a lot of inner working knowledge about the diabetes?
Yes. Yeah. No. He's on top of it. He, when I was m I MDI, I I told him, like, you need to learn to put insulin.
So he was not as scared of the syringes and anything. He was I was like, okay. Do seven units, and I'll put it on my arm. And, yeah, I trained him. He's really good.
I actually I sent him a video of the glucagon, the Oximie.
Yeah.
Yeah. And he was like, oh, now I know how it is. And I was like, yeah. You need to know just in case. I have a couple on my counter.
Yeah.
Pay attention.
Pay attention. Yeah.
Did he ever talk to you about that incident when you were dating? Did it scare him? Make him think twice about dating someone with type one, anything like that?
Not at all. I actually told him. I was like, I can't believe you keep dating me. Like, he was like, no. I mean, I got scared for you.
But other than that, I was like, yeah. Whatever.
Didn't frighten him away.
He's not no. No. Not at all.
How about you? Did you have concerns? Like, did you think, oh, maybe I'm gonna be like, maybe that'll be the end of it for me here? Like, will he be embarrassed or worried or anything like that? Or did you have a relationship where that didn't come into your mind?
You know what? It didn't come to my mind.
Mhmm. How long had you been dating at that point?
Like, three months.
Are you serious? Well
Yeah.
Well, he likes you. That's for sure.
Definitely. Yeah. Yeah.
Is it a big Yeah.
I don't know about it.
Yeah. You mentioned that the kids did trial net more than once, it sounds like. Is that a big worry for you?
Yes. I think that's that's a that's the biggest my biggest worry. Like, now that they are 15 Mhmm. That kinda, like, decrease, it doesn't worry me that much anymore because, you know, they are becoming adults. So I know it will be easier if that happens than if they were a toddler.
So still, it will be super scary, whatever. I don't I you know, nobody wants their kids to be diagnosed with type one diabetes. But Right. I think it wouldn't be for me as bad as I thought or as vast as bad as it was when I was when they were younger.
You think that's because of technology or because you understand it?
Because I understand it. K. I mean, technology is great. I know it also helps a lot, but I know it is because I understand it better now.
Alright. Hold on a second. Sorry about that. I just something caught my eye. It it messed me up for a second.
The nurse who prayed for her48:37
Anything that we, haven't talked about that we should have? Like, I wanna know if I'm missing anything in your in your story. Because you told me before we started, like, you're like, I have a lot of good stories, but, like, maybe I'm not getting to them as much as you would want. So is there, like, one in your head you're like, people need to hear this one?
Well, I think the big one was when I came visit my my husband the first time.
That's a good one. Yeah.
Yeah. That was totally a good one. Yeah.
What about when you how often do you get back to Mexico?
Well, we are planning on going probably during the winter. We don't go very often because we are not, like, too close from where I used to live in Mexico. Not too far, but not too close. So it's not like a it's not the place where we will go driving because it will take at least two days.
Right. Right.
Uh-huh. And so if we are going, you know, flights are not cheap right now. So
No. I know. I saw I had to fly somewhere recently. I was like, what do they this is I mean, I guess it's the cost of gasoline, I imagine. But but it was crazy.
What what how do you make a plan to to travel for a long like, because you if you go, you're gonna stay for a while. So you bring a ton of supplies, but is there any other thoughts you have around traveling? Any concerns that you have and ways that you figured out around them? You
know, the good thing for me is, like, I know how pharmacy and doctors and everything works in Mexico, so it's not very scary. Like, I know I will be able to figure. Like, okay. I forgot my insulin. I don't have insulin anymore.
I will just walk to the closest pharmacy and get the insulin.
So you don't need a prescription. You can walk in and just get it?
Yes. Oh, well, at least that was five years ago,
but I was
just still living there.
Gotcha.
So yeah. I don't think that have changed.
Right.
And if that's the case, like I say, my uncle is a doctor, and he pretty knows, like, that I am diabetic. So he will make a prescription for me for sure. I wouldn't have a problem about it.
Yeah. I was gonna I was gonna say, do you have still have family there? How about brothers and sisters? Do you have brothers and sisters?
Yeah. I have one sister. She's three years older than me, and I have a a brother. He's six years older than me.
Back back when you were diagnosed, so they were they still in the house at that point, or were they not living at home?
Yeah. My sister was there. She was actually she was very scared because she say that when they took me to the hospital and then they send me back home, before I peed my pants, I was sleeping. And we used to have kinda, like, not like the bunker bed, but the one that you pull out of the it's like a twin bed and you pull out one
Yeah. Under And there's one underneath of it. There's a name for that that it's escaping me at the moment. But yeah.
Yeah. I don't remember the name. So I I used to be on that one, that the one that you pull out and she was higher. So she could see me and she say that my eyes were were rolled back. Like, my eyes were completely white.
Mhmm. Like, she could not see my pupils. And she was super scared because it was hard for me to breathe because of the my heart rate. So I was like and she say that for a moment, I stopped breathing.
Yeah.
Just went quiet. And she was like, Xenia. She starts shaking me. Mhmm.
She
was like, are you okay? And when I woke woke up, that I didn't woke up, she say that my eyes were, you know, black. Not black, white, like, roll it back.
Oh, oh, yeah.
Yeah. And I look at her and I say, yeah. I'm fine. And she freaked it out.
I would imagine. Yeah. She freaked out. She's like, great. This one's possessed.
We gotta go. Yeah. Yeah. Exactly. Yeah.
By the way, trund trundle bed. I can't believe that's such a simple word escaped me. But since my kids both had one, it made me feel silly. It's like I go when I couldn't think of trundle. So she thought you were possessed, obviously, then you went to the doctor, and, and they found out just diabetes.
All of them possessed by diabetes, really. If you think about it, it's in there now. You're not getting there. Right. Yeah.
Yeah. Yeah. I mean, I guess we could pray over you, but I don't think that's gonna work. So I think it's I think it's gonna stay.
Let me tell you Let me tell you. Oh, this is part of the story. When I so when I was in the hospital for three days when diagnosed, they the last day I was in a room. I was not in the ICU username. Right?
Intensive care. Mhmm. So I was out of the intensive care, and they sent me to a room. So I was by myself. My mom was not there.
I think she went home to get clothes and change and whatever. And so someone knocked on the door, and she was like, can I come in? And I was like, yeah. But I didn't know this lady. So she entered the room and she asked me, but she couldn't, like, really speak.
She was, like, holding her mouth, like like, trying to hold her cheek. And she say, are you seeing me? And I started freaking out, you know, like, what the heck? And I say, yeah. That that's me.
Who are you? And she say, I am the ER nurse. And when you got here two days ago, I really wanted you to make it, and I was praying for you.
Oh my gosh. Yeah. That's scary when you realize that somebody saw you and really thought that this girl's not gonna live.
And she told me that she had her wisdom tooth surgery that morning, and that's why she had, you know, like, PTO, and and and she she did it at the same hospital. So she went to to make sure that I was there.
Oh, that's nice.
So she found my room. She asked for my room. She went to my room, and she told me that she was praying for me, and I really appreciate that.
Well, that's lovely. Well, I guess you never know what's going on around you, really. That's nice.
Yeah. I regret I didn't ask her name. I I don't know.
Well, I think maybe you were a bit out of it sounds like you might have been a bit out of it still. So
Oh, yeah. No. For sure. Yeah. Yeah.
Everything was so weird. Actually, when I got out of, you know, the hospital and, you know, I started doing better and then they added the Humalog, Vispro, I remember that I was not feeling very well and my hands start shaking, and I didn't know what was that. I don't know. Like, I couldn't relate the symptom to something, like, associated. Yeah.
Yeah. And so I checked my blood sugar, and I was one zero four, 104. And I was like, okay. That's how it feels when you are having a low. I have not been in the hundreds for so long that now being in 104.
It's like if I'm having, like, low blood sugar symptoms.
Okay. Yeah. Does that that doesn't still happen anymore, though. Right?
No. No. Not at all.
No. Very nice.
No. But
Surgeries, pregnancy, and a 4.9 A1c55:48
Did you, I'm sorry. I, for the first time, looked at your notes. You had do you have some surgeries? Why did you wanna talk about those?
Oh, yeah. Well, surgeries, I had my wisdom took actually couple months after I was diagnosed. Mhmm. They have to do one side first and then the other one because they did one side and then I was, like, 120. And so the dentist was like, you know what?
I prefer you to come back so you don't, you know, be on a risk of a low because you cannot eat, obviously. So I was like, yeah. That's fine. So and then they scheduled the other side of my wisdom too
I see.
In another day. That was one. Then I had a c section when I had my boys. I recovery very fast. No problems about the the surgery.
Mhmm. Then I had my appendix. Also, no problems. I was still using not using any technology at that time. Okay?
Mhmm. Recently, I just did a hysterectomy, and the only thing I had to do was to put the activity mode on my Omnipod. Okay. And pretty much that was it. It worked perfect.
I had not problems with low or high blood sugar during the surgery.
Very nice.
It was easy peasy.
How about the I I I meant to ask you earlier, and then I got away from me. But pregnancy with the twins, like so is that a natural, or did you use IVF? And what was the pregnancy like with diabetes?
Yeah. No. It was natural. So my dad's mom, she had multiple pregnancies that were multiple. Mhmm.
She was the only child of, I don't know, if 16 siblings or 16 pregnancies. I obviously, I didn't know that runs in my family because my dad doesn't have siblings, and my mom doesn't have twin siblings in the family siblings in the family. So so I was like, yeah. I don't know what it is. And yeah.
No. But it was natural.
Yeah. Did you not get pregnant a second time because you thought I don't want four kids?
I did not. And then I started a couple of problems, like fibroids and stuff, and that's the reason why I did the hysterectomy.
But you know Yeah. My wife's going through that right now.
Yeah. It's not fun.
No. Are are are happy that you did the hysterectomy?
I am super happy. Best decision ever. I was having a mild anemia before because of those fibroids and
Mhmm.
And all, you know, the heavy heavy bleeding
Yeah. How about during the period. Was it painful too? Did you have pain?
Just a little bit, you know, the first couple of days, but not too bad.
Okay.
It was this was a laparoscopic robotic assisted.
Mhmm.
So
How long ago did you do this?
Not not very invasive. That was in January this year. Oh. So just a couple months ago.
Well, let me just, ask questions that are just for my wife and not for anybody else. How was the, recovery? Because they they make it sound like the recovery is pretty long.
Yes. So they usually give you six weeks. That's kinda like the Yeah. Like, the regular. I start feeling better after the second week.
Like, start feeling myself. Like, okay. I I'm I'm seeing you again. Obviously, the first week was horrible. Not horrible, like, bad bad, but you cannot do anything.
Yeah. Sleep, some pain medication, sleeping. Right?
Exactly.
Yeah.
So, yeah, after the second week, like I say, you start feeling yourself again. And then I went back to work, which I actually, I work remotely right now. I do go to work, like, to the office a couple of times during the month. But
Mhmm.
Like I say, it's just an office work, you know, like
Yeah.
Yeah. Sitting all the time. So the first days, I was actually using one of those seats for people with
Hemorrhoids. Hemorrhoids. Yeah.
I don't know what they have.
The the the doughnut. You use the doughnut?
The doughnut. Yes. Yes. It I use it, like, two days, and I was like, okay. I'm fine.
Kinda like I push myself to get used to, you know, be sitting for longer hours because at the beginning, they felt it kinda, like, felt like, I cannot be sitting, you know, like, not even an hour. So I was taking breaks.
Yeah.
Breaks. And, yeah, everything worked out. I Good. If you ask me, do I recommend if you're having serious problems with weighted, yeah, do it.
It was it was worth it.
I can tell you it was worth it. Yeah.
Well, that's good to know. Thank you. But going back to your pregnancy, like, were there adjustments made for your diabetes? Did your care change? I mean, I'm I'm trying to do the math.
Were you using NPH still during your pregnancy?
Yes. Yeah. Yeah. I was using NPH and Lispro, and, yeah, there were changes. I had to increase my NPH.
Mhmm. And I did not increase, I think, the the Lispro. I think it was only the NPH, like longer like, higher doses
Okay.
Of NPH. I actually they had to use steroids by the end of my pregnancy to develop the lungs of my babies. And I can tell you that it did not affect my blood sugar, which is weird because I know that some that's that's the name. Right? That's how they call it.
Steroids?
You have to use steroids. Yeah.
Yep. And and what were what were the problems the babies had?
No problems.
No problems. No problems.
But they Okay. They they tried to use that before the end of the pregnancy because they don't they didn't know if they, if they could be in Spanish, it's which means that they will be big babies.
Did you have what was your a one c like through the pregnancy? Do you know?
Oh, I hit the fours.
Oh, you were that no kidding.
I was, like, 4.9. Yeah.
Oh, so big big big babies because they were worried about you because there's two in there, not because of your diabetes.
Yes. I gotcha. So they were checking in every month or every, like, three weeks. They run the a one c's every three weeks just to make sure that I was doing fine. But the thing is that if you're running high, like, with high blood glucose during your pregnancy is when you have the risk of having a big baby, like, heavy Mhmm.
Baby. Because I don't know. And and and and don't trust me about this. There's some doctor here that could say how it really works. But so it's like the baby is trying to send insulin for your high blood sugar.
Okay. Okay.
So I don't know how that can affect the baby and make it big.
But that was one of the concerns. Okay.
That was one of the concerns, which, thankfully, that didn't happen.
Didn't have a very
good a one c's during the pregnancy. Yeah.
Did your insulin needs change very quickly after you delivered?
I don't remember.
You're like, that was a while ago.
I don't remember. Yeah. I I
don't remember.
But I I I do remember I had to adjust, but I don't remember how fast it happened. Like, if it was right away or or not.
So your memory of this is really just you kinda followed along with what the doctor said and and things worked out well?
Yes. Yeah.
Cornhusker family, and Panic Room1:04:04
Alright. That's nice. Are you still a are you a Cornhuskers fan? Do you still go to games, or was that a one time thing?
No. We are going to all the to every time we can, we go, and we watch them. Yes.
Nice. Nice.
It's a Cornhusker family.
I would imagine. And your kids do your kids play sports or anything like that?
They do. They do wrestling, football, and soccer.
Oh my gosh. So you're always somewhere on a court or in a on a field or something.
Yes. Yeah. Yeah.
Which do they like
tell you. Resin resin is the one that can affect my blood glucose the most.
Why? Because do you get upset or excited?
No. No. I I get excited. I get, like you know, every time they get on the mat, it's like, I'm like, gosh. I don't know what's gonna happen here.
I just don't wanna see, but I have to see.
You get nervous for them?
Yes. Do
you? Oh, that's nice. That's very nice. That they which one do you think they like the best of the sports?
Football.
Football? You don't do you mind them banging into other kids, or are you okay with that?
Oh, no. I'm okay. They've been doing that since long ago. Since they were born.
Yeah. I I
They tackle each other.
Oh, I was gonna say. Right? They're they're they're probably probably so interesting to raise twins. My neighbor had two sets of twins. And Oh my gosh.
Yeah. One was one set was boy and a girl. The other set was two girls. Okay. Yeah.
It's a lot because they all they all come due for college at the same time. You know?
Right. Yeah. That's that's the next the next journey here in a couple of years.
Yeah. Do you think they'll go?
Yeah. Yeah. We are planning on it.
Very nice. That's nice. Well, is there anything that I haven't asked you that I should have or anything that got missed?
I think we cover everything. Yeah.
Yeah? You feel good about this? Were you happy with how it went?
Yes. Awesome. Happy.
I'm glad.
Really, I wish I could say more about, you know, the teenage years. The, I say, if there's a new a new kiddo diagnosed, you know, when you're a teenager, you're gonna get there.
Yeah.
I wish I didn't worry as much as I did at that time. You know?
You were very worried as a child?
Yeah. Yeah. I used to cry of my when when I when I went to my nieces and nephews in Mexico, Pinata parties, I used to be like, I have You know? And and I was so worried about it.
But All worked out okay.
I was not. You know? Yeah. Yes.
Well, take care of yourself. Right? Keep up with trends. Do a good job, and go live your life. Right?
Exactly. Yeah. And they have it easier now with all the technology. So
Well, and that's you talking from experience. You you find it just easier to exist this way than it was previous.
Yes.
Yeah. Do you imagine there's even e like, aside of, like, you know, a cure, do you imagine that there's easier than this to be had, or is it hard for you to imagine anything being as good as what we have now?
Can you repeat that, Scott?
Do you think that technology will get better again, or do you think that it's about as good as it's gonna be for diabetes care?
Oh, no. I definitely think they will keep improving. Mhmm.
Yeah. Mhmm. I
I Every time they come up with something better, you know, so yeah. I mean
It's happening faster now.
Yeah. I mean, the idea will be like, hey. We don't need the technology anymore, you know, because they're secure.
Yeah. But until then
Yes. Yeah. And it is great that all the improvements, you know, being able to watch to use that a watch to look at your blood blood glucose is
Even that's amazing. Yeah. No. I agree with you. Okay.
Well, I appreciate you doing this.
That movie. Did you watch that movie where this little girl has a watch and she could see her her blood glucose on it.
No. I remember that movie. No. Is it recent?
No. It's a very old movie. I don't even remember who's in it and, like, in the name of it. I just remember that they kinda, like, they bought a house, and it had an elevator. And there were two people who was trying to get into the house.
And at the end, I do remember very
well Panic room.
She grabbed
Panic room with Jodie Foster?
Yeah. Yeah. Yeah. Yeah. And she grabbed a bunch of needles and start, like, put it on the this person trying to, you know, like, kill him or something.
Yeah. How did I remember that? That was awesome of me. From your by the way, from your description, no one should have been able to get that. I'm very proud of myself right now.
Description was like, you know, she had a watch with her blood sugar on it, and they people were trying to get in the house. And I'm like, oh, panic room with Jodie Foster. You know, I think the, the, the girl in that movie is the is the the vampire girl. Hold on a second. Panic room actress.
It's gonna tell me Jodi. But Kristen Stewart. I knew it. Look at me. I win again.
Yeah. Kristen Stewart was the little girl in that movie.
I never associate her with that movie.
Yeah.
I didn't know it was her.
2002. That's a long time ago. Wow. We're old. Jesus.
Yeah.
Yeah. I'm seeing a a How
old are you, Scott?
I'm 54, but I'm looking at a recent photo of Jodie Foster here in one of her in 2002, and I thought, uh-oh. My life's almost over. That's what I thought that's what I thought when I saw that. I remember her being a little girl in movies. This is a problem.
Anyway alright. I'm gonna let you go, and I I do really appreciate you doing this with me. Thank you. Can you hold on for just a second, though? Don't don't don't hang up.
Okay?
Yeah. Okay.
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.
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#1923 Drop Shipping
Drop Shipping
A shy, funny 13-year-old who runs his own bike YouTube channel talks celiac, a 6.6 A1c, and managing three weeks in Spain on his own — and names the episode himself.
Jump to a moment
- Diagnosed at six, early in COVID. His mom caught it fast — nighttime bathroom trips, weight loss, constant hunger — so he never hit DKA. One parent allowed in the hospital, a few hours in a small room, sent home with a single insulin pen and a good-luck.
- Celiac was the original diagnosis. Evan and his sister both have celiac; his mom has thyroid disease. The whole house is gluten-free, which he takes in stride — his one gripe is that gluten-free options can run carb-heavy.
- He runs his own management. Omnipod 5 and Dexcom, a 6.6 A1c, and near-total self-care — he prefers it that way, saying he already knows what to do and doesn’t like re-explaining it to everyone.
- A shy kid with a public streak. Evan is open about anxiety and getting help for it, doesn’t love therapy, and is quietly building a mountain-bike YouTube channel with 300+ subscribers and videos in the thousands of views.
- Three weeks in Spain, handled solo. Flights, hotels, pod changes, gluten-free meals abroad — he ran all of it himself. Scott’s closing push: take the win, and let a dozen real accomplishments become actual confidence.
- Breakthrough T1D — The research and advocacy organization (formerly JDRF) where Evan serves as a youth ambassador.
- SugarPixel — The bedside glucose display with alarms and a new under-mattress bed shaker — useful for heavy sleepers with overnight lows.
- Juicebox Podcast survey — A quick way to support the show — take the listener survey.
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. Are you a US citizen?
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Learn more and get started today at tandemdiabetes.com/juicebox. Touched by Type one is my favorite diabetes organization, and they're sponsoring this episode of the Juice Box podcast. Please take a moment to learn more about them at touchedbytype1.org. Also, follow them on Facebook or Instagram. When you get to touchedbytype1.org, check out their many programs, their annual conference, the d box, dancing for diabetes.
They have a golf night. Gosh. They have a dance program for local kids. Go check them out at touchedbytype1.org and see what they're up to. That make sense?
Yep. Yep.
Okay. I'm just gonna say testing. Can you do it too?
Testing.
Awesome. Evan, we're ready. You introduce yourself. I'll ask a question before you know it will be done.
Meet Evan — 13, and he loves math2:44
Okay. My name is Evan, and I am 13 years old. And I've had diabetes for six years.
Six years. You were diagnosed when you were seven?
Yeah. Mhmm.
Do you see how Six. Quickly Six?
Yeah.
Wow. At the end of year, you're you're sixth year, though. Right?
Yeah.
Yeah. Math. You know what I mean, Evan?
Yeah. Yeah.
You like the math or not really?
Yeah.
Do you?
I love math. Yeah.
What are your favorite things to do at school besides math?
I like recess and getting to go home.
Don't love school, Evan? Is that what you're telling me?
Yeah.
Yeah. But you're good at math? Yeah. Math's a good thing to be good at. That's awesome.
Well, let's talk a little bit about you having diabetes. Do you actually remember anything about being diagnosed? Yeah. Tell me about it. Okay?
Diagnosed at six, during COVID3:42
So I was diagnosed, like, when COVID was kind of getting started, I guess. So the only person who could come to the hospital with me was my mom because only one person could come.
Yeah.
And I didn't really understand it that much. And I remember the scariest thing for me was I thought I was never gonna be able to eat food again. So I guess
That's interesting. Do you remember why you felt that way?
Not really. I just I think I wasn't allowed to eat, like, a bunch of sugar that day, but, like, I thought that meant I could never eat again.
Yeah. So Well, you were That was You were six. Right?
Yep.
Were you in first grade? Yeah. I was an idiot when I was in first grade. I can't imagine. Like, you were in the hospital by yourself as a first grader.
Yeah.
Wow. How long were you there?
I was just there for one day because I don't think you were allowed to stay overnight.
COVID stopped it from being you weren't allowed to be sick anymore during COVID. You had to leave.
Yeah.
Yeah. Were you very sick, or did you No.
No? I wasn't that sick because I I wasn't that high because I caught it pretty early. So I don't I wasn't in DKA or anything. But
Did you catch it or did your parents?
It was my mom.
What did she notice?
I'm not really sure. I think she just noticed that I was going to the bathroom a lot in the middle of the night and that I was, like, kinda really skinny, and I was, like, always really hungry.
Yeah. Good mom. What did she do you have, like, other people in your family who have type one? How would she know what all that meant?
I don't have anyone in my family that has type one. I don't really know. Some of our neighbors and some of her friends have type one. So
Oh, she might have known. Or Google maybe. You know? Yeah. Do you guys even Google anymore?
You guys just using ChatGPT? What are you doing?
Google.
Google. Did they let you use AI in school yet? No. No? When do they let you start doing that?
That's gonna be crazy. Yeah. Okay. So your mom takes you to the hospital. There's all the confusion around COVID.
Nobody's allowed to come in. They they take you from your mom at the at the ER?
No. No? We, like, went in together. And then it was just, a really, really small room with a really small bed, and we were there for probably a few hours. I don't quite remember how long, but we weren't there for that long.
Then they booted you out? Yeah. Okay. Okay. And then you were there overnight by yourself, then they your parents came back and got you?
I didn't stay overnight.
Not even. Oh, oh, wow. Just one day and out. Okay.
Yeah.
Okay. Okay. Did you did you leave with, like, stuff, or did you have to go to a doctor if they're like, did they give you insulin and supplies, or what they do?
I'm pretty sure the only thing they gave us was, like, one insulin pen and, like, a few needle tips and then just kicked us out and told us
Good luck.
We would figure it out.
You'll be fine, probably. Goodbye. Yeah. My gosh.
And then that night, my first meal because they told me I could eat whatever I want except for soda, which I don't normally drink anyway. Mhmm. The so what I had for dinner that night was oatmeal, pizza, and ice cream. Because they told me I could eat anything I want.
You were and you were really hungry?
Yeah.
Plus just getting over the fear that you were never gonna eat again. You probably picked your favorite stuff.
Yeah.
Well, since since then, I fig I guess you figured it out a little bit better than that?
Homeschool, co-op, and back to school7:40
Yeah.
Yeah. What's it like going back to school with diabetes? That because you were if this happened at the beginning of COVID, then I mean, it might have been a year before you went to school. Right?
Yeah. So after I was diagnosed, I was I mean, it was COVID, so everyone had to do, like, online school, like, homeschooling.
Mhmm.
But I didn't do that for that long because before that, I went to a homeschool co op. So it was like, you homeschooled part of the time and you went to, like, school a few days a week.
Okay.
So then I kinda just dropped out from, like, school, I guess, and just started homeschooling, like, with my mom and my sister. So I did that for about two years. And then I the first school I went to after that, it was a Montessori school, and it was okay. With diabetes. The school wasn't that great, but it was okay with, like, handling diabetes and stuff.
Everybody, I think, understood it pretty good.
Okay. Would do you have a feeling as a kid that you're on your own when you're at school, or do you have a feeling that somebody's taking care of this and you're a passenger? Or do you know what I'm asking you?
Yeah. So I take care of myself, like, like, completely now. Mhmm. Because I don't really like other people doing anything, but I know that I always have that option. So, like, I feel pretty good at school because I know that I can always have someone to get help if I need it, but then I can also kinda just, like, live my life.
What do you, dislike about other people helping you?
I'm not sure. I just don't really like talking that much, so I don't really wanna explain to them, like, what's going on
Yeah.
And what they need to do because I already know everything that I need to do because I've been doing it for so long.
You're not looking to explain it to a bunch of people over and over again?
Yeah.
You don't like talking very much, but you're on a podcast?
Yeah.
How'd that happen?
I don't know.
Was this your idea or did your mom force you into this?
It was I guess it was kind of all of our ideas because I listened to another podcast, I guess. And I thought it would be cool if I was on here. Nope. I mean, no one is gonna really ever talk to me About diabetes. Gonna listen.
Yeah. So people oh, I see. So do you not have a lot of people to talk about your diabetes with in your life?
No. I do. I just don't I'm kinda shy. So
You're shy. Okay. Yeah. But this doesn't bother you? You're okay with this?
Yeah.
Okay. Why do you think that is? Because we can't see each other or because why why do you think
it be.
Yeah. I don't know. No. It's interesting. Well, I'm glad you're here.
I appreciate it.
Yeah. Thanks for having me.
Oh, you're very kind. No. No. It's, it's my pleasure. Let's, try to get your perspective here.
Okay? So you've lived half your life without diabetes and half your life with it pretty much. Yeah. Would you call it part of the background now, or is it something you're thinking about all the time? Do you find yourself upset that you have type one?
Half a life with type 111:15
Do you not mind? What's your whole mindset around it?
I mean, I don't love having diabetes, but it's I've definitely gotten better at controlling it and kinda just, like, dealing with it. Mhmm. But, I mean, it's always gonna be hard, it's still hard because I'm always having to learn, like, what my body's doing and how to take care of myself. But it's definitely a lot easier now that I can meet other kids through doing, like, some breakthrough t one d stuff. And I can talk to people about, like, how they deal with their diabetes and just getting to, like, have friends that are, like, kinda know what I have to go through.
Can I
ask you a question?
Yeah.
I just did something recently, and I have to be honest with you. I'm not sure how it's gonna go. So I took I mean, you don't listen to the this podcast. Right? Your parents do.
I listen a little bit, but my parents listen
Yeah.
More than me.
When you when you were listening, is it about kinda more, like, management stuff, like, talking about how to manage diabetes, or you listen to conversations with people?
I think it was, like, a conversation.
Okay. So I have these episodes I imagine your parents have listened to that kind of, you know, talk about how to take care of your diabetes and how people do it. And I recently turned them into a collection of songs, but for really little kids, like like, not your age. Right? Like, three, four, five, six years old in there.
And they're very, like, just kinda sing along either about it a a minute or two long each, and they just talk about diabetes, kind of trying to be from the perspective of a little kid, try to give them a little bit of background. But I also created a few that are for, like like, between ages. So, you know, right where you're sitting. Right? You're kind of at the end of between.
Right? You're, you know, a teenager now, but, like, nine, 10, 11, 12 in there. Do you think you would but when I did it, I thought, I don't know if kids this age would do this or not. Does that sound like something that would be interesting to you?
If I sing?
No. No. No. If you listen to a song that kinda is a short song about diabetes, it helps you a little bit. Is that a thing you would try, or does that sound silly to you?
I'll listen to it. I don't wanna sing now.
No. You don't have to sing, man. I'm not saying that. I'm not I'm not even saying listen to it now. But what I'm although, I guess you could.
But when when we're all done, I'm gonna give you a link. And would you go check them out and then send me an email later and tell me what you thought?
Yeah. I'll do that.
Thank you. I appreciate that. Okay. Alright. We'll we'll we'll get past that part now.
So you come home. You're learning about your diabetes. You're gonna be pretty young, so I'm not gonna ask you a bunch of questions about it back then. I'd I'd like to talk to you more about how it feels right now for you in present day. So do you have a feeling like your family and your extended family are able to help you with your diabetes if you can't help yourself?
And I mean, like, your grandmom, your aunts, like, like that. This episode is sponsored by Tandem Diabetes Care. And today, I'm gonna tell you about Tandem's newest pump and algorithm, the Tandem Mobi system with Control IQ plus technology, featuring auto bolus, which can cover missed meal boluses and help prevent hypoglycemia. It is a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandemdiabetes.com/juicebox.
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Yeah. I feel like my grandparents know, I think, quite a bit, but the rest of my family doesn't live too close to us. So we don't really see them that much, but I feel like the people who I see the most, like, know how to help me.
How does that feel to know that people invested time into learning how to help you?
It's pretty nice because, I mean, it definitely took a few days because once I got home and kinda got more used to it, my parents went over to my grandparents' house and tried to teach them, like, how to give me a shot or how to help me find the carbs and food or something like that.
Mhmm. So Pretty nice.
Don't understand it as good as, like, me and my parents and my sister, but they still understand it and they'll, like, do their best to help me.
That's lovely. How old is your sister?
My sister is 15.
She's a little older than
you. Yeah.
Celiac came first17:34
Do either of you have other autoimmune issues? Does somebody have, like, celiac or hypothyroidism? Anybody in the family with that?
Yeah. My mom has thyroid disease, and me and my sister have celiac disease.
Oh, you got the celiac. Oh. Yeah. How's that going?
It's okay. I've had celiac for before diabetes, so I'm more used to that.
Oh, that was your OG problem?
Yeah.
Yeah. Yeah. And how about your sister? She had it a long time as well?
Yeah.
Okay. What do you guys do? Like, how would you I guess you've had it forever. You don't even I was gonna ask you how your life is different, but you probably don't know. Is it is it Yeah.
What do you guys do you is anything in the house gluten, or does everybody stay is everybody non gluten in the house, or how do you manage it?
Yeah. Our whole house, like, doesn't have gluten. I mean, sometimes we'll have, like, a bag of hotdog buns for a cookout or something, but that's, like, the only thing.
Yeah. What would happen to you if you had one of those hotdog buns?
I guess I just get, like, sick. I mean, I wouldn't, like, get that sick, but I just wanna feel good for a while.
So sick like your stomach hurts or stick like, can we talk like men for a second, Evan? Like, are you gonna be in the bathroom, like, pooping a bunch or, like, if yeah. Yeah. Not, like, not fun pooping. Not that there's fun in men.
It's gonna be like, oh my god. What's happening? Like, that kind of thing.
Yeah.
I got you. When you say so when you say sick, you mean you're gonna get the shits. Is that about what you're saying, Evan?
Yeah.
Okay. We'll bleep that part out so your parents don't hear it. How long does that last for?
I'm I'm not quite sure because I'd like
Hasn't happened in a long time?
Eat gluten. But Yeah. I think the last time I got sick was I got a I asked for a milkshake at, I think, Sonic, and they gave me a malt. It's, like, only gluten
Yeah.
And, like, milk. So I was like, this doesn't taste like a milkshake. And then my mom, she tried a sip of it, and she was like, oh, that's a malt. So we went home, and I was didn't feel too good for a while.
You know what you should've done? You should've stayed at Sonic and used their bathroom. That would've taught them. You know what I mean?
Mhmm. Yeah.
Yeah. Well, I'm sorry. That sucks that you have to do that, but it doesn't seem like it bothers you, though. Like, having to eat gluten free. Does it it's not a big deal for you?
Not not really because I mean, gluten free food, we found a lot of good gluten free food. So I guess, really, my main problem is just not being able to eat that many carbs, but celiac doesn't bother me that much.
Omnipod 5, Dexcom, and a bad G7 batch20:30
Interesting. Do you wear a pump right now? Yep. Which one do you have?
Right now, I have the Omnipod five.
Are you using the new 100 target?
I'm not sure.
Tell your mom when you're done. They just lowered the target down to 100 if she wants to change. She can, I think, do the update and do it?
Yeah. I think we did that. I'm just not positive.
I understand. You're not the you're not the IT consultant in the house. Is that what you're saying?
Yeah. Yeah.
Yeah. What is that? Were you wearing a Dexcom? Is that a g seven, g six, g seven fifteen days?
The g six right now.
Oh, not much longer.
Yeah. I don't like the g seven, really.
Why? It's smaller.
Yeah. When I tried it, I don't know if it was, like, a bad batch or something, but it did not work. It was, like so I was, like, 50, and it said it I was, like or I was, like, three fifty or something, and it said I was, like, 50.
Well, I hope you find a way to make it work for you. Are you do you stay very hydrated? Like, are you drinking water during the day?
Yeah.
Yeah? Where'd you put where'd you put the g seven when you put them on?
I think on my arm. I'm not sure, though.
How long ago did you try it?
A few years ago. Maybe, like, two or one.
Well I'm not sure. I will tell you my daughter uses it. It's never an issue for her. It doesn't mean it's not an issue for other people, but I would say give it another try. I mean, you're gonna have to.
So give it another try and and, you know, I I man, I don't know. But to tell you, I wouldn't be scared. I would I would just get in there and give it a shot. I bet you it's gonna be okay.
Yeah.
Yeah. They have fifteen days now. Lasts for fifteen days.
Yeah. That's a good thing because the g six only lasts ten, I think. But a lot of the times, it doesn't even last that long.
Yeah. How long does it usually last for you?
Maybe about, like, seven days.
And then what happens? It starts getting wacky?
Yeah. It just, like, starts, like, missing a bunch of readings, and so I'm, like, fiftieth and, like, two fiftieth and, like, a 100.
Mhmm. You know, I was just talking to a a research scientist who makes the the Dexcoms, and, it's super interesting. Like, that little so you know when you inject your sensor, like, a little wire goes under your skin. Right?
Yeah.
Yeah. And it's got some listen. The technical parts of it, don't know. But it's got this coating on it, and the coating helps it to measure the glucose that's in your interstitial fluid, which just means kind of like the liquid running, like, in your in your body. It's not actually believe it or not, it's not actually measuring your blood.
Yeah.
And then I guess your body sees the wire as a, like, a foreign invader and starts to send, like, white blood cells to it to attack it. And sometimes then those the coating on the wire that helps with the measurement breaks down faster, and so some people are able to wear it longer or shorter depending on how that process goes.
Oh, that's cool.
Ain't that cool? Yeah. I thought so too. I I actually wanna have him on to, like, really, like, explain the whole thing. And I did send an email, and I am waiting back, and I'm trying to be patient because I think it would be a really interesting conversation for people to hear.
Yeah. Because they because otherwise, it just feels like, oh, the thing doesn't work the way it's supposed to. Right?
Yeah.
Yeah. Do you mind putting on the devices? Do you mind, CGMs, pumps, like, the insertion process, or is it not a big deal to you?
I don't mind doing the CGMs as much, the pumps. I mean, they're not bad. I just don't really like doing them because three days goes by really fast.
Yeah. Feels like you're always doing it.
Yeah.
What are you on Omnipod, you say?
Yeah. Yeah.
I know Arden was hanging out with her friends last night. She's older than you. Like, she's, like, gonna be 22 in a month. Wow. That's crazy.
And and she's like, hey. My pod just expired. Like, it was done. It she, you know, wrote it out to the very bitter end, the eighty hours. Do you take it out the eighty hours as much as you can?
Or do you take it off the first time it tells you?
We take it off, I think, I guess, the eighty hours.
Yeah. Whatever. All the way. Right? Till it, like, shuts off?
And, she goes she's just like, can you bring me a pod, please? Like, you could just see like, she was like, I don't really feel like doing this. And, so I filled one and brought it to her. I didn't put it on or anything. I just, you know, handed it to her because it's kind of a bummer.
Right? You're doing something, then all of a sudden, it has to stop. You gotta do this other thing.
Friends who have his back25:16
Yeah.
Yeah. Do your friends, well, first of all, Evan, only get ahead of myself. Do you have friends?
Yeah.
Alright. Cool. How do your you seem like a nice kid. I would imagine you have friends. How do your friends talk to you about your diabetes?
Is it a thing that you've helped them to understand, or have they figured out on their own, or do you keep it very private?
A lot of my friends, I guess, know people or have heard of diabetes before. So a lot of my friends, like, know a little bit before they meet me. And then they know, like, that you have low blood sugar and high blood sugar and that you'd, like, need to eat sugar sometimes. But, I mean, they're not, like, professional doctors, but they all understand it pretty good. And a lot of my friends have helped me.
Like, if I'm not really close to anything, like, they'll help me get back and, like, make sure I have everything that I need.
That's really nice. I know a couple of doctors that aren't professional doctors. What do think
of that?
How's your doctor? Any good?
Yeah.
You like him or her?
Yeah. She actually just, I guess, not retired, but she moved away from the hospital. But I haven't met my new doctor yet. So
Oh, well, that's something. I my daughter just lost her doctor too. It sucks, honestly. Well, I'm sure the next one will be good. And if they're not, you can go look for another one.
You know?
Yeah.
What do you what do you count on your doctor for? Because you've had diabetes for a while now. Like, you know what you're doing. Even with the celiac, know what you're doing. So what does the doctor help you with when you see them?
I mean, I feel like not
Evan, you can say it. Go ahead, buddy.
I don't feel like they do that much, like like, when I actually see them. I guess the really, the only thing they do, I guess, is, like, give me the actual devices, like the CGMs and the pumps and stuff.
Prescriptions. You don't even see prescriptions anymore. That's all digital. Right?
Yeah. Yeah. I don't feel like I need to, like, get advice from them, really.
Mhmm.
But I guess I just need to go see them so they can make sure I'm alive and they're not just prescribing stuff to a corpse.
Evan, that is the most honest that's that is the most honest reaction to that question I've ever gotten in my life. That's awesome, man. You're fantastic. Thank you. You're like, they just touch me.
They go, yeah. Yeah. He's alive. He can have more insulin. I would have oh my god.
Just made my day. I would imagine that endocrinology for people with type one diabetes will will maybe move almost completely online at some point. Like, maybe you'll see your doctor once a year, but that you're gonna check-in through, like, Zoom calls and things like that, and they're look at you and go, hey. You look like you're looking forward still. How's everything?
Go get your blood work done. I'll check the blood work online. Like, you know, the whole reason you'd go to the doctor is because you have a problem they haven't seen before, and, you know, and then they need to take your blood sometimes then test it. But now there's now there's, you know, phlebotomists or, you know, blood testing locations near your house. You don't need to go to the doctor for that.
It's not like you're being diagnosed with something new. They already know you have type one diabetes. They don't really need to lay their hands on you again, not not very frequently. Maybe, you know, once in a while, check your extremities and stuff like that. But even that, I mean, I gotta be honest.
My kids had diabetes for a really long time. Evan, like, you were six. My daughter was two. Just told you she's on yeah. Yeah.
I just told you she's almost 22. She said it for twenty years. And, like, you know, they, like, they touch your feet and, you know, and do you get that once in a while? They're like, hey. You feel that okay?
I can. And they're or, like, run a leg of thing up your foot to see if you move, like, that kinda I mean, you know what I mean?
Yeah.
Yeah. Yeah. You hear me. Right? It's all bullshit.
Right? Say it. Go ahead, Evan.
I'm good.
I like you. You're very good, kid. You're also, like your parents are nice people. Yeah. Yeah.
You feel that about them? Like, you feel that they're kinda kind, nice people?
Yeah.
What would you tell if you had to explain them to somebody else, how would you get that across to a stranger?
I mean, I feel like my parents are really nice. I mean, they don't let me just do, like, absolutely anything I want, but they let me do, like, anything that I I want to do that's, like, reasonable. They help me with a lot of things. They make sure I get everything that I need. They help me with my diabetes.
They
If you need if you need help with your type lot. If if you need help with your type one overnight, is it always one of them, or do they share that responsibility?
They share the responsibility, I guess, because I do not really wake up.
Do you think about that ever about when you get older? Like, what am I gonna do when I have to wake up?
Yeah. I mean, I don't know why I don't wake up because normally, for, like, any other slight noise, I, like, shoot up. But for the, like, alarms and stuff, I just sleep, like, right through it.
So if a squirrel runs across the roof, you think someone's breaking in the house. But if you hear beep beep beep beep, you don't move. Yeah. Well, they would tell you that you've built up something called alarm fatigue. Like, your your body is your body is accustomed to hearing it so much so that it kinda tunes it out.
Yeah. I guess so. Yeah. You can try changing your alarms to different sounds. That might help you.
Alright.
Yeah. Do you have a SugarPixel? No. Customtype1.com/juicebox. I make a couple bucks if you buy one, Evan.
And it's this it's this very cool little device that goes to the side of your bed that you could, like, you can see your blood sugar, like, without having to open up your phone. It also has alarms. It also has a thing called a bed shaker. I know I sound like I'm doing a sales pitch here, but I just got to see the new bed shaker in action, like, up close. And it it's like a little puck or a disc that you put under your mattress.
And when your blood sugar hits it, you know, you decide by at what number, but that thing vibrates. And I'll tell you what, if that doesn't wake you up, I'd I'd be surprised. So
Yeah. That's I've I've I've heard of the SugarPixel, but I have not heard of that.
Yeah. It's pretty cool. I actually Yeah. Yeah. I I have and the new one has, like, little characters on it and everything.
You might be getting a too old for that. Now you can shut that part off and just use pictures and stuff like that. But if you want the characters, pick the, the pirate because I am technically the pirate. I just wanna say that. And, anyway, everyone should check that out.
SugarPixel, college, and making money32:23
Mine, please use my link. Sorry, Evan. You don't know the hell of having to make money. It's not fun. Are you looking forward to going to college and learning something and going out on your own, or how are you feeling about all that?
I I feel like I don't need to go to college to make money, but
How are you gonna make the money? Plan. Heaven, how are gonna knock how are you gonna bring home the bags? What's going on? What do you got a plan?
I don't know. I guess so.
You guess so? Did your mom go to college?
Yeah. My parents have gone to college. I just don't like school, so I don't wanna do more school.
Yeah. Can I tell you a secret, Evan?
Yeah.
Not many people like school. Yeah. They also don't like taking out the trash, but then there's the trash out at the corner. You know what I mean? Somebody does it.
Yeah. Yeah. You'll you might feel different as you. But even if you don't, that's not for us now. Have you thought about what happens when you get older and you move out and around your diabetes, or is that not a thing you've considered yet?
I mean, a little bit, but not that much.
Not that much yet. Yeah. You're too young for all that. I wouldn't worry about it. Seriously.
Yeah. Do you do for, what they call fun? You got pets, activities you do, anything at all?
I do a lot of biking and, like, engine stuff. I don't know. I I like outdoors.
You like the outdoors? What kind of biking? Like, off like, do you, like, get on the street and ride for distance, or you get on, like, something like a BMX bike and ride in the dirt?
I have a BMX bike, a mountain bike, and, like, a minibike. It's, like, a small, like, motorcycle thing.
Oh, is it electric or gas?
It's gas.
Nice. Your parents let you have that?
Somehow.
Do have to talk him into it?
Yeah.
Your dad ride a motorcycle when he was younger? No. No? You just did that like not my dad. Is that what you just did?
Yeah. I heard shade. You know what shade is, right, at 13?
Yeah.
Yeah. Heard a little shade for your dad there on that one. You're like, nah. He's not cool like that. Is that what I got?
Yeah. And I heard a lot in that yeah. Didn't I?
Yeah. Mhmm.
Well, that's good. You you see you like being outdoors? Do you go out with your friends? You look kinda more alone when you're outside? How do you manage your diabetes when you're running around and doing all that?
I guess I go and do stuff with my friends a lot. And then they I've known the like, my friends that I spend the most time with, I've known them for, like, a pretty long time. Like, so they know like, they they can, like, call my parents if they need to bring me something. Mhmm. Or, like, they always make sure I have, like, glucose tabs or something before we go out.
So I can I feel, like, good going out with them and doing stuff?
You're comfortable around them. If you if you had a problem, you think they'd have your back?
Yeah.
Have you had a problem? Have you ever gotten so low that you can't help yourself?
I think one time at my old school, I was really low and I was, like, not thinking too straight. And there weren't teachers, like, really close. It was, like, the end of the day, and we had, like, recess at the end of the day. Mhmm. So my one of my best friends, he ran and got, like, a teacher, and then they came and helped me.
But I feel like my friend did, like, most of the things that I needed to happen. Like, the teachers didn't do
That's awesome.
As much as he did.
Yeah. Was that recently or a while ago?
It was a while ago. It was maybe three years ago. I'm not quite sure.
How often do you get, like, not low where you can't help yourself, but low? Like, is in a week, you, like, having to run for a juice box with any frequency or no?
I mean, not that much, but I guess most of the time when I go low is in the middle of the night, like, I have to drink juice or something.
Yeah.
It's most of the time in, like, the middle of the night.
Gotcha. What's your do you know your a one c?
I think it was 6.6
That's awesome.
Or something like that.
Good for you. Especially gluten free. Some of the gluten free options are more carb heavy, so it's a little little Yeah. You know, little more insulin and and maybe knowledge about how to cover that stuff. Good for you, man.
That's really awesome. You said you're taking care of it yourself mostly?
Yeah.
That's cool. Where'd your did your parents taught you, though?
Yeah. I've we all, like, kinda figured out together. So I was once I once we all kinda, like, figured out how to manage it better, I just thought it would be easier if I could learn how to do it because then I wouldn't be, like, really helpful just when I got older.
Mhmm. It's smart. It's good for you. Are you like that with other stuff? Like, you like to be in charge of what you do and know what's going on?
Yeah.
You do? That's your personality then. It's not just about diabetes.
Yeah.
Gotcha. Hey. Do you have any pets?
I have a guinea pig.
Really?
Yeah.
Does it got a name?
Yeah. Coco.
Coco. How long have you had him? Hammer hard, do you know?
It's a hurt.
Her? How long have you had her?
Three and a half years.
How are they as pets? Are they fun?
Yeah.
Do they good. Tell me.
I've taught her, like, some tricks and stuff. She's like a lot of guinea pigs aren't, like, very smart, but she is really smart, and she has, like, a really big personality, I guess.
That's nice. You know, if you ask people about their kids, they're like, oh, my kid's so smart. Everybody thinks their kid's so smart. Yeah. Have you ever met a kid that's not smart?
Yeah.
And his mom thinks he's smart too. What do you think of that?
Yeah.
Yeah. You'll never know if that guinea pig's smart or if you just love it. You know what I mean?
Yeah.
Can I ask you a couple because you said you like to go outside, and I just read through your notes for the first time? I'm I'm a well prepared podcaster. I just looked at the notes that your mom sent. But you live somewhere where I I think about moving to.
Oh, really?
Yeah. How do you like it there?
I think it's pretty nice. I mean, I don't I guess, I spend most of my time, like, not out in the city and stuff, but I just like like the neighborhoods and stuff around here, like the outdoor stuff that they have here.
I was looking at a slightly more rural location, not quite where you are, but pretty close to where you are. And I only know that because your mom, for some reason, like, typed in the town you live in, which we're not gonna tell people we're not gonna tell people where you live. But I I wanted something, like, a little more rural, like, maybe a, like, a little more space between me and the next person.
Yeah.
Yeah. You like that about the area?
Yeah.
How's the weather? Don't lie to me. In the summer, too humid or is it okay?
It's really humid.
Don't say that in front of my wife. I'm never gonna get the mood if you say that. Okay? It's either,
like, really humid or, like, really rainy.
You get a pool?
Yeah.
Alright. Because the pool hard to come by there. Right? Because the ground's rocky. A lot of people don't like, there's no basement in your house.
Right? No. Yeah. You know why that is?
Because our house didn't come with a basement.
You would think so. But what I've learned from looking into it, Evan, is that the ground is so rocky that it's too expensive to dig the basement. Oh. Interesting. So Yeah.
Your friends don't have basements either. Right? No. Do you have any friends with basements?
Yeah.
Is that friend richer than everybody else?
Yes.
Ah. See how we just figured out how the world works by the holes under your house? Amazing. Isn't it, Evan? Yeah.
Yeah. Look at how I am. I'm like a a detective. You know what I mean? Yeah.
Except about stupid stuff. Right? Because that's the dumbest thing ever. But we did figure out that your richer friend has a basement. Yeah.
Did they treat you differently because they're rich?
Not really.
I mean Not really?
They just have more expensive stuff, I guess.
Shyness, anxiety, and getting help41:18
Yeah. Evan, I like your age because you're right at the part where you almost understand my psych sarcasm, but not all of it. So you're not a 100% sure all the time. It's it's kinda delightful. Are you having a good time so far?
Yeah. Are you nervous?
Little bit.
You're still nervous? It's been a half an hour. What's it like being shy? Like, how would you do how would you describe it to somebody else?
I don't know. I guess just not really wanting to talk to a lot of people.
Are you anxious at all? Do you know that word? Yeah. How you are anxious?
Yeah.
How does that come across in your life?
I mean, it's not, like, the most fun thing ever, but it's not, like it doesn't, like, ruin my life.
Yeah. It it's it's manageable for you.
Yeah.
Do you think that the shyness and the anxiety have something to do with each other?
Maybe. Yeah.
We might figure some stuff out while we're talking, Evan. Like, the thing with the basement, which I dissected in two seconds. I I know you were impressed by. It's okay to say. Yeah.
It's okay to say if you were impressed. Well, how about your anybody else in your family anxious? Like, where'd you hear that word from? Did somebody tell you you were anxious, or do you just feel that way?
I just felt that way, I guess.
Have you ever told your parents? Yeah. What'd they say?
They, like, help me with anxiety and stuff.
How do you how do you help with that? How does a person help somebody with that?
They help me, like, talk to a doctor about I don't know what kind of doctor, but someone and then they gave me, like, anxiety and depression, like, medicine.
Okay. Like boy. If I guess the medicine, do I win something? Is it Sure. Is it Cymbalta?
I don't think so. No.
You don't know what it's called, though? No. Okay. Does it help? Yeah.
Awesome. Like, it help do you think it helps a lot? Like, is it a noticeable change for you?
Yeah.
That's awesome. And how long have you been doing that?
Probably about a year.
Okay. How about your sister? Does she do the same or no?
Yeah.
How about your parents?
Yeah.
You guys just have, like, a whole, like, you have, like, one big bowl of pills in the middle of the counter? Yeah. You just pick out of them like a candy dish?
Yeah.
Yeah. It's it's nice to get help with stuff like that. It really is. Trust me. The unchecked anxiety your whole life is not would not have been fun.
It's it's Yeah. Kinda cool that your parents are helping you with it. Do you talk to a therapist ever?
Yeah. But I do not like it.
Is it better talking to me or the therapist?
You.
Do you feel better now than you do while you're talking to the therapist?
Yeah.
Why do you think that is?
I don't know.
Because I don't like telling people stuff, really.
But I'm not people?
Yeah.
I'm like a Like Go ahead.
Your computer.
Yeah. I'm just the guy on the other side of the thing.
Yeah.
Yeah. This is nice. Okay. Yeah. Well, I'm not a therapist, so please don't get confused about that.
And I'm not saying I am. But, you know, if people just wanna chat, make pod do you think that's what the podcast is? Maybe people are just using it like free therapy?
Yeah.
Could be. Right? Should I charge them money for like, what do you pay to go to the therapist? You know what I mean?
Too much.
Yeah. I could take some of that cash. Help me move to, our undisclosed location. Yeah. I was just there a few weeks ago.
Oh, really?
Yeah. I I stopped on my I I was really serious about it. I was I was on my way to Atlanta to I gave a diabetes talk in Atlanta. I was terrific, in case you're wondering about it. And and I stopped where you are, about where you are, and I looked at a couple of houses while I was there.
Oh, that's cool.
Yeah. And I'm I am trying to talk my wife into going back, or to going with me next month to look around a little bit. We figured in July, we will have a pretty reasonable a pretty reasonable feeling for what the weather's like in July, right, like, far as the heat goes.
Yeah.
Yeah. So we figured when if we're there in July, we're gonna we're gonna know. And so so, yeah, we're gonna try to, like, go back and check it out together a little bit. Yeah. Tell me one reason why forget the weather.
The airport game46:10
Is there a reason why I wouldn't wanna live there? What do you hate about the place?
I don't know. I like it, I guess.
Yeah. Nothing nothing that you'd really nothing jumped out. I didn't nothing jumped out at you when I when I said that. Right?
Yeah. Okay. I mean, I guess one of the worst things, I guess, that isn't really that big of a deal
Mhmm.
Is there's not, like, a, like it's not, like, a big city, so you can't, like, travel anywhere from it. It's not, like doesn't have a big airport or anything. So
Is there not the oh, I almost said the word. Isn't there an international airport, like, an hour from you?
No. Really?
Yeah. Where does that airport go to? What? There I mean, there's definitely an airport. Where does it go to?
It's just, like, flights to bigger airports, I guess.
Hold on a second. It says it's international. Where would you like to go? Let's see if we can find a fly I know where you would fly from, so we won't say it out loud. Tell me a place you wanna go, and I'll I'll see what we can find.
Maybe, like, Europe.
Alright. Alright. Hold on a second. Can we go from here? Hold on a second.
I just have to get the the airport code for this one. I got it. Alright. So do I go to Paris? Let's say Paris.
Okay? Alright. Alright. Just gonna use Air France. Wow.
Not cheap, in case you're wondering. No. You can do it. You can leave 9? Yeah.
$900. You wanna go? You got 900? No. How much you got?
I don't know.
I can't like Scott on a job. I don't know. Let's look at one other place. How about London? When do you wanna go?
Let's go next week. We'll leave on the third we'll leave on the thirtieth. We'll come back. We'll just take a short trip. We'll leave on the thirtieth.
We'll come back on the fourth. That way, can get home and see your family. And survey says, oh, the Internet works so much better than I was a kid. You have no idea. Yeah.
We can take off. There's a connecting flight. Hold on a second. To London. But that's not a big deal.
Yeah. Go you gotta go from you to New York, New York to London. Yeah. That's not bad though, right? Not 1,600, my friend.
2,700 on Delta. $2,700? That's premium. Business is 8,000. Economy is a thousand.
Who is paying $8,000 a final plane? I wanna meet you. We should be friends. And I I bet they have a basement is what I'm gonna say. You know I'm saying?
Yeah. Did I almost make you laugh that time, Evan? Yeah. Because I'm trying pretty hard. Anyway, hold on one second.
I'm gonna tell you that because now we're looking at a map. The thing I oh, you are much further east. The so the place that I looked at was more like two hours west of you.
Oh, yeah.
Oh, okay. So you're, like, more like three hours from the airport.
Yeah.
So that is not really very close. And then you would probably fly out of the state on your right hand side, not the state you live in. Is that what I'm getting?
Yeah.
Yeah. Okay. Look at us figuring things out and not you're a pretty smart kid. How you're following along. Like, I'm talking cryptically to you, and you're following me.
Why is that? Why are you so smart?
I don't know.
You are, though. Right? You have good grades even though you don't like school?
Yeah. Mhmm.
What he’s proud of50:17
Evan, tell me more about you. Seriously, tell me something about you that other people don't know that you think is really interesting about yourself.
I don't I don't know.
You don't know? What are what are you proud of about yourself?
I guess being able to, like, manage all my health things and stuff because, like, a lot of my friends and stuff, like, they know that I have diabetes, but, like, they don't really know that, like, everything that you have to do, like, twenty four seven.
Yeah. And that's a thing that you're proud of?
Yeah.
You should be. And and do you think that other people would find that interesting?
I think they would find it more interesting if they, like, knew what it was like to live like that for, like, your whole life.
So if you met a person who did not know about diabetes and you wanted to impart upon them how proud you are of yourself, but you first had to explain diabetes to them, what would you tell them about it?
That it doesn't sound that complicated, but it's like a full time job.
How so?
Because you never get a day off, and it's just like you always have to be doing something or have to be, like, giving yourself a shot or, like, making sure you can eat what the food that you wanna eat and, like, make sure you have enough insulin and just everything.
And that's important because Pretend I don't know anything about diabetes. What what why do you have to do those things?
So I don't die.
That's a short term problem. Do you have long term concerns?
I don't know.
Your parents talk to you about any of that stuff? No. No? You get to it when you get older. Don't worry.
You got time. I think that's a really good explanation. Yeah. That's a really good explanation. And you're making my point.
You're a bright kid. I like this. I think you're you know what? You wanna hear something really sad, Evan?
Yeah.
This is just sad for you, though. I think you're gonna end up going to college.
Oh, dang it.
Man. I think you're gonna end up going to college. If you did go to college, what would you wanna learn about?
Engineering.
Oh, so if engineering is what pops into your head, but you don't think you're going to college? Yeah. We get to use the AI, start a startup, become the world's first startup trillionaire. Is that your plan?
Yeah.
Yeah. You just wanna make about, what, a couple bill and then you think you'll be okay? Yeah. What would you do if you had to start a company? Right now, I get alright.
Here's the here's the game, Evan. I bring you money right now. I go, Evan, here's a bunch of money. Start a company. What's the company?
I don't know. Maybe, like, drop shipping, and I can become really rich.
Evan, you gotta get off of TikTok. Are you on the TikTok? No. Where where are you getting drop shipping from? Reels?
I don't know.
YouTube? No. Oh, that's it. So wait. Hold on a second.
Do you have TikTok? No. Do you have YouTube?
Yeah.
Yeah. Do you have Instagram? No. No. So you have YouTube.
The YouTube channel53:57
You use YouTube for what?
I have, like, a YouTube channel.
Do you really?
Yeah.
What's it what do you want people to know about it or
no? Sure.
What's it well, hold on. I'll look into it. You said drop shipping. I almost, like, I almost peed myself. That's the that's the most what are you guys?
Millennials? What are you? Do you know what your thing is? I don't even know how to do you know what what your hold on a second. A 13 year old is I'll find out.
I don't know all about the, like, you know, boomer, millennial. No. You're okay. You're not a millennial. You're a Gen Alpha.
Did you know that? Or or possibly a late Gen z depending on the exact cutoff someone uses. Alright. So not the point. Your answer of drop shipping was the most whatever the hell I've ever heard in my entire life.
That was crazy. Alright. What's your what's your account? I'm gonna look it up.
It's T1DUnderscoreMTBMX.
Oh, the bike angle.
Yeah.
You have 312 subscribers. Dude, your videos have thousands of views.
Yeah.
Your videos I I don't really use YouTube. Like, my podcast goes up there because it just does, but people don't want, you know, people don't wanna listen to audio on YouTube. Generally speaking, there's a few of you out there. God bless you. But, like, I don't do 6,000 views on a thing.
This is awesome, man. Is it just you, like, learning tricks on your bike? Oh, I just saw you jump over a ramp? Another one. Yeah.
Okay. It's not raining there in this video. You made it you made me scared that it's just constantly raining. Alright. So at t one d underscore m t b m x mountain bikes.
Right?
Yeah.
Alright. Everybody go check out Evan on YouTube. That's cool. Oh, look at you. Did you start this yourself, or did you go to your parents and say, I wanna start a YouTube channel?
I mean, I guess I did it myself. I just had to ask them to get YouTube.
Yeah. At your age, do you does YouTube feel like a job to you or just a nice way to reach people?
I don't know. I I mean, it doesn't feel like a job. It just feels like I don't know.
Just a a thing that you have access to?
Yeah.
Yeah. Drop shipping. That's what we're calling this episode. I can't believe you said drop ship. Of all the things I thought you were gonna say, that would not have been on my top 1,000 list.
You guys are so your whole generation is so incredibly connected to the the world. By the way, I don't think drop shipping's real. I think it's a thing like, I think it's a pyramid scheme. Be careful. Okay?
I could be wrong. Maybe I'll get a note from a drop shipper. But you guys are inundated with videos that tell you, like, you know, here's the thing you can do to be wealthy. Right?
Yeah.
They're everywhere. There's two things you can do to be wealthy. You wanna hear what they are? Yeah. Go to school and then put your money away.
Compound interest. Okay?
Okay.
Alright. Save a dollar, make 10. Spend a dollar, lose 11. You understand?
Yeah.
Alright. Save for the future. Unless you get lucky, and then god bless you, and that's so cool. But you can't plan for, like, giant success like that is my point. You you watch mister beast?
No. Have you ever?
No. That's
interesting. He's only 26 and he seems old to you. Because you know what it is. Right? Yeah.
Yeah. But you you're not interested? No. Is there a mister beast for your age group? Is there some, like, YouTuber that you love?
I mean, not really.
I just Okay.
Don't really spend that much time on, like, my phone.
On your phone? You're outside a lot. Yeah. You did say that by the way, I think that's great. But you, you did say you listened to a podcast, though.
Did you is that did you say that?
Yeah. I guess, see you a little bit.
No. I thought you said another one, or am I miss remembering? I'm misremembering. That's fine. I don't wanna pull the curtain back too far, but I've already recorded once today, so I could be confusing two different things.
Sorry about that. What what am I not asking you about that you would want me or someone else to know?
Breakthrough T1D and meeting other kids58:45
Maybe, like, I do a lot of things for breakthrough t one d.
Do you? Okay.
Yeah.
Like, in person events or walks? What do you do?
I do the, like, the events and, like, the galas and stuff, and I'm a youth ambassador. Okay.
What what do you get out of that? What does that do for you? Like, how does it enrich your life?
I don't know.
Something you want to do? Is this the thing your mom making you do? What's going on?
Yeah. Kind of. But
She'll be thrilled to hear that.
I have met a few kids that are, like, around my age, but they've had diabetes for, like, a year or, like, less than a year.
So it has been nice to meet people?
Yeah. And I think it helps other people too that they know, like, that there's other people out there too that have diabetes.
Yeah. So you do enjoy being that person for someone else?
Yeah.
But just you're shy, so it's not great for you.
Yeah.
Yeah.
I just don't love having to talk to a bunch of random people.
But Yeah. I hear you. But A
lot of the people that I meet are also pretty shy. So
Well, you know, they say a stranger is just a friend you haven't met yet. You buy into that at all? No. No. No?
What else is your mom making you do that you wanna that you don't wanna do?
I don't know.
Not too bad? That's the school? Were you gonna say school? Yeah. What's she making your dad do that he doesn't wanna do?
I don't know.
You don't know? Trust me. My whole life success is because my wife makes me do things I don't wanna do. I'd be making you know what I'd be doing right now? I'd be making a BMX YouTube channel if it wasn't for my wife telling me that we had to take out the trash and paint the room and stuff like that.
You know what I mean? Yeah. It's good sometimes to get a girl to keep you in line. You know? Or else you're just gonna be a boy the whole time, which is nothing wrong with it, but you're not getting anywhere.
Although you might be an engineer.
Yeah.
Okay. Computers, electrical Mechanical. Mechanical. I was getting to it. Mechanical.
You like the way things work?
Yeah.
Yeah. You said something about engines earlier, but you didn't expand on it. Have you ripped apart engines?
Yeah. I like I don't know. I like things that, like, move.
Do you like trying to figure out how they move?
I guess so.
Yeah. What do you what's the last thing you tore apart to see how it worked?
I'm not sure.
Have you done that? Have you ripped things apart to kinda just look inside and see what they do?
Yeah. I guess the last thing was my my mini bikes, like, my little motorcycle thing. I like taking that apart and doing, like, upgrades and stuff to it.
You put it back together?
Yeah.
By yourself?
Yeah.
Yeah. Look at you, man. You must be proud of that.
Yeah.
Yeah. It's okay to be proud of yourself. I'm proud of myself, all I do is make a podcast. You know what I mean? Like, I I I'm not even dirty when it's over.
So Evan, you're a good kid. What do you think the next couple of years are gonna be for you? Are you gonna be 14, 15, 16? What are you looking forward to? What's coming up?
Being able to drive.
Yeah. Driving. It's awesome. You know, there's a state near you. You only have to be 14 to drive, but that's not your state.
Maybe I should move there.
Move there. Would you what would you do? Where would you go if you could drive right now?
I don't know.
See, now you have this driver's license, you're buying insurance, you got a car, there's nowhere to go. Don't be in a hurry to grow up, Evan. How does anybody ever say that to
Yeah.
Yeah. You know why they say that?
Yeah. I don't know.
Because they wish they were younger like you. You're busy wishing you were older like them. They're busy wishing they were younger like you. You know the word fickle?
No.
No? Well, that's what people are. You can look it up later if you want to. Anything we haven't talked about that we should have, Evan? Anything at all that I've missed, forgotten to ask you about, or that you want desperately to tell people about and have not been able to yet?
Three weeks in Spain, on his own1:03:27
I the like, a few weeks ago, I went to Spain, and I went for three weeks. And I, like, handled all my own diabetes stuff and,
Evan help. You you went for you went overseas without your mom and dad? No. With my With your mom
and dad. Family.
Okay. I was gonna say, like, that's you're you're you're not telling me the whole story if you're international traveling by yourself already. But so you went you and your family went to Spain. And Yeah. Three week trip, you managed it the whole way.
Air planes, hotels, buses, trains, pod changes, the whole thing.
Yeah.
Never once said, hey, mom. I I need a ham with this.
I don't think so.
No. Happy darn, boy. That's awesome, man. Good for you. You must be thrilled that you can do that.
It's okay. You you you let yourself have it, Evan. You know what I mean by that? Yeah. Yeah.
Take the win. You ever heard that one?
Yeah.
Yeah. Take the win, man. That's pretty impressive. I line up a bunch of 13 year olds. I don't know that they could all say that.
Seriously. You know what you need?
What?
I think you need more self confidence.
Oh, yeah. Probably.
Where are we gonna get that from?
I don't know.
Simple stuff, man. You should look around to your life. You're already doing a ton of things to be proud of. Like, take something from that. Like, look at it and go I mean, anything really.
I figured out how to set up a YouTube channel and set up a camera and video it and got thousands of people to look at it. That's an accomplishment. Be be be feel good about that. I can take care of my diabetes in a way that leads me to an what'd you say? An a one c, are Six and a half, do you say?
Yeah.
That's awesome, man. There's adults out there listening right now that are like, this kid is crushing it, and I wish I could do as well as he's doing. So be be confident about that. There's a there's a two things you're great at. It sounds like you're very good at, you know, mechanical engineering for a 13 year old.
Took a part of motor. That's a thing to be proud of. You got a really great family. It's easy to be proud about that. You're a nice person.
I think that's the thing you should be proud of. You know, you do well in school even though you don't want to. It's perseverance. I'd be proud of that. Did you even know there were 10 things that you should be proud of before we started talking?
Not really.
No. Don't forget. Okay? Alright. Do me a favor.
Like, take this level of confidence and this is your new look. This is your new normal. You live up here now. Okay?
Okay.
You see how confident I sound? Yeah. Yeah. Mostly, I'm lying to myself about this, but there are a couple of things I've done that I'm real good at. There's a couple of things I'm really good at.
I'm not good at everything, but I'm proud of myself for those things. And I and my derive my confidence from that. You know what I mean?
Yeah.
And and don't let people tell you that that's boastful. I mean, don't run around yelling to people all the time how good you are at everything. That's just you being a jerk. But, like, you believing it, that's confidence. There's nothing wrong with being confident, especially when you have, like, a lot of great check marks here, things in your life that you you should feel confident and proud about.
Yeah.
Alright. Listen. Uncle Scott has done enough today. You know what I mean? Yeah.
This is all I got in me. Do I was school over? Are you is
this Yeah.
Yeah. Yeah. I was gonna say I didn't get you a day off from school. Did I? That would be awesome.
No.
No? What do we call this episode?
Drop shipping.
Goddamn right. That's a good for you, kid. That's what we're calling it. Drop shipping. That's right.
Alright. You were fantastic, man. I'm gonna stop the recording now and say thank you, but let me talk to your mom again so that, you know, we make sure she's good with everything. Okay? You wanna say goodbye to the people?
Goodbye Awesome. People.
Goodbye, people. Thank you. You're sarcastic. You got a good sense of humor. You should let it out once in a while.
Tell me a joke. You know a joke?
Yeah.
Can can you before you get your mom, tell me the joke.
Okay. Would you rather eat a baby goat or a matter baby?
Would I rather eat a baby goat or a matter baby?
Yeah.
And I'm supposed to say, what's a matter baby?
Yeah.
Yeah. Alright. Okay. It wasn't great. We'll work on that.
Go get your
mom. Okay.
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 a 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.
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