#1994 Multiple Daily Inhales
Multiple Daily Inhales
Liam was diagnosed ten days before his sixth birthday. Now he's fourteen, six foot three, and inhales his insulin. He and his mom Rachael explain how.
Jump to a moment
- Liam was diagnosed in August 2018, ten days before his sixth birthday, after the pediatrician missed it twice. The tell was thirst — Gatorade after camp, a wetting accident in his first week of kindergarten, a line of kids waiting behind him at a zoo water fountain. What broke it open was Rachael's father, who had been diagnosed with pancreatic cancer on Father's Day that year and was having his own blood sugar trouble. He told her to go buy a meter. It read HI twice. The ER read 582 — "a number I don't think I'll ever forget."
- They left the hospital after two and a half days with fixed units for 30 to 45 carbs, three test strips a day, and no one having mentioned that CGMs existed. She found them by scrolling at night. Insurance wanted ninety days of logged numbers she didn't have, so she scribbled in what was missing and it was approved. NovoLog and later Afrezza each took appeals and an external review.
- Afrezza entered the story in a restaurant. A co-owner in Indianapolis with type 1 inhaled at the table, then showed her his flat Dexcom line. She went home, found the pediatric trial on clinicaltrials.gov, contacted IU in Indianapolis, waited out a COVID enrollment pause, and got in during 2022. Eligibility required an A1C above 7.1 and Liam's was 7.2 — "we barely flew over the radar." For once she was glad the number wasn't lower. His lung function test took seven attempts with the whole room rooting for him; he passed on the fourth. A randomization button put him on inhaled insulin for the full year, and his A1C went from 7.2 to an all-time low 6.3.
- The early roller coaster had a specific fix. She posted in the Afrezza Facebook group and MannKind's CEO, Michael Castagna, asked for her number and called her directly. His coaching: the drift down to about 75 is the Afrezza wearing off, not a low heading lower — stop treating it and Liam will coast back up. They had been treating 70 to 80 as a low for four and a half years, because doctors kept telling them that anything under 180 was good. Scott's reframe: if you are only guarding against lows, you are doing it by keeping his blood sugar high.
- Liam gets on the mic at 1:13 and lays out the thing Scott says Afrezza users never manage to explain. Slow-acting at night. Awake at 6:45, 24 to 28 units inhaled — two 12s, plus a 4 if it's 28 — five to ten minutes before two waffles, two pieces of bacon and sugar-free syrup. Worst case after breakfast is about 180, and an hour later a 4 brings him to 80 to 120, or an 8 if he's snacked. Lunch is 24 to 32. Before soccer he eats a little and takes nothing, because the movement evens it out, and a 4 at 160 doesn't scare him because it's gone in an hour with no tail. He has never worn a pump and doesn't want one. On inhaled versus injected he is unambiguous: "It's tons more friendly to younger children. No pain, quick."
- Afrezza — Inhaled insulin — FDA approved for pediatric use in 2026, which is what Liam was in the trial for
- ClinicalTrials.gov — The registry Rachael searched herself to find the pediatric trial and its locations
- Bold Beginnings Series — The newly diagnosed questions answered plainly — for anyone sent home the way they were
- Juicebox Podcast Pro Tip Series — Management fundamentals with Jenny Smith, episodes 1000–1025
- Eversense 365 — One insertion a year, with unlimited data sharing through the Eversense Now app
- Twiist — An insulin pump with the twiist loop algorithm, targetable as low as 87 — or call (877) 489-4478
- US Med — Dexcom, Libre, Omnipod, Tandem, iLet and more — or call (888) 721-1514
Every word of the conversation
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Meet Rachael2:23
My name is Rachel, and I am the mother of a type one diabetic. His name is Liam, and he is gonna be 14 at the end of the week. And he was diagnosed, ten days before his sixth birthday.
Wow. That's almost eight years ago. It is eight years ago.
Yeah. Eight years ago. Four days ago was his, I guess, you would call his diiversary.
I was gonna say you're right up on it right here. Wow. Oh, you're at that little tipping point too. He's had it longer than he had... He didn't have it.
Yes. Yes. We are there.
Is that a thing that occurred to you as it was happening as you kinda crossed that line?
Yeah. Like, two years ago when, I was going back saying, oh, it's been six years. I was like, oh gosh. He's gonna be 12. I'm like, he's had diabetes half his life.
Yeah. Yeah.
No. It's crazy sometimes to think about it in in other ways. Well, I think you you have a pretty specific story, don't you?
I don't know. I like I like to think it's kinda typical, but then also kinda specific.
K. Let's let's find out. How did you figure out he had type one?
That sounds like your typical story, I would say. Typical in that he was having the excessive thirst, the frequent urination. We went to the doctors, I wanna say twice. I wanna say in July 2018, and then again at the beginning of August two thousand eighteen, went to the doctor, saw two different medical professionals, and both of them more or less just whisked us away and said, he's fine. Mhmm.
At the end of August, he started kindergarten. It was his first week of kindergarten, and he had an accident. The nurse called me and said he's gonna need some new pants. And I said, okay. So I ran some, you know, underwear and pants to the school.
Go to the Store and Buy a Meter4:21
In the meantime, I called my dad, and he was like, go to the store and get a glucose meter. And I was like, why would I do that? And he's like, to test his blood sugar. And I was like, okay.
What's your what's your dad like? Marcus Welby? What's going on there? There's... By the way, there's a reference for six people.
But, you know, how did your dad know that?
Well, that's a whole other story. He was diagnosed with pancreatic cancer on Father's Day of 2018. So while dealing with his cancer pancreas, I guess you would call it, he was having blood sugar issues. So I guess maybe that's what tipped him off. Like, we...
I still to this day don't know how or why, but I assume it's something to do with his pancreas and him having issues with his blood sugars. So I guess at that time, he was just was like, go get one. And I was like, okay. Like, whenever my dad tells me to do something, I usually do it. So I was like, yep.
I'll take your advice. So I went to the store and bought one.
Yeah.
So forever grateful for him for sure.
Do do do you know that we were, coming home from something yesterday? It was myself and Arden. Arden's boyfriend was with us, I think Cole. And I don't know what we were talking about, but, you know, something about, you know, what do you do if the cops pull you over or something like that. And Arden said, could I just say, can I please call my dad?
He would know what to do. And I was so touched by that because she treats me like I'm an idiot all the time. You know what I mean? But I I realized that, like, when she got into a pinch, she was like, well, that... The guy the guy knows.
I'll I'll ask the guy. So Oh, yeah. I'm glad your father... That's really kind of amazing because I imagine you tested his blood sugar and it said, what? What?
Right?
Oh oh gosh. Yeah. Like... So I I didn't go pick him up from school early. I didn't because I I guess I didn't realize how serious it was.
So I left him at school for the day. And then in the meantime, I did call the doctor, and I said, hey. You know, we were in in July and August, and he was drinking a lot, peeing a lot, bed wetting, which he hadn't done in a while. And they said they they really didn't say much, to tell you the truth. So I just got him home from school, you know, got the little test kit out, said we're gonna poke your finger here and get a little bit of blood and test you.
And at that time, I didn't understand. It just came up high on the meter. Mhmm. And I was like, well, I don't know what that means. Let's just do it again.
So he pricked his little finger again and came back high again. We're reading the manual, and I was like, I think it means that he's over four hundred, I guess. I said, I don't know what that means. So I I called the doctor back, and I was like, hey. We got Liam and pricked him, and my meter says hi.
And they're like, go to the ER. And I was like, oh, you don't want me to come to you? And they're like, no. Go straight to the ER. And I was like, okay.
Did they say, well, we haven't been any help so far. Do you
Why start now?
Let's not let's not break the trend we're running. Okay.
Yeah. Exactly. So at that time, he was a... He was pretty lethargic. And at that time, I guess, was when you finally noticed you're like, he doesn't look healthy.
And, like, I I used to... Now looking back, he hadn't looked healthy for probably two, three months. He'd lost a lot of weight. And I guess when you see your kid every day, you just don't see that. You don't see the little sub...
Subtle differences. So we didn't notice anything different. But then when I looked at him, was like, oh, yeah. You don't look good. So told my husband, I'm packing him up.
We're going to the hospital. So he stayed home because our other son was two years old at that time. So he stayed home with the two year old, and I packed Liam up and took him and call... I think the doctor did help us in that they called the ER and said we're on our way.
Oh. Well, that's nice.
So they did that. You know? So when we got there, the ER was pretty packed. They called us straight back, which was great. So we felt very very VIP at that point and got his blood pricked there at the hospital, and that is when we saw the number of 582, which is a number I'll never forget.
And they admitted him straight away. Jeez. And then we stayed at the hospital for a few days.
Hey. Hey. Now you're saying that you're telling me he didn't look good for months maybe. Give me... I need a timeline on the phone call to the doctor's office where they send you to the ER and the first time you go to the doctor and say, hey.
The kid's wetting himself. What's the span of time in there?
Thirsty After Camp8:52
So I wanna say in June or maybe it was July. I signed him up for a week long summer camp. It's like a day camp because he was only, five. So it was like you went for the day and then you picked him up in the afternoon.
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After those camps, he would always just be like, I'm thirsty. I'm so thirsty. I'm thirsty, thirsty, thirsty. So we would just be giving him drinks, you know, water. I think around that same time, my mom would take him to soccer games, like, for my nephew, and she was like...
She'd come home and say, he's so thirsty. He, like, down two Gatorades. You know? And, like, she's like, he's just thirsty. And I wanna say June, July, we didn't know if it was behavioral issues or what, but he would, like, get up in the middle of night and just, like, drink from the sink.
And we would be like, you need to go to bed. You know? And we just thought it was behavioral since we didn't know it
was about diabetes. You didn't think it was the opening scene to a horror film?
It was... It... We went to the zoo one time, and they had this, like, lion that, like, would... That like, a drinking fountain. I just remember one time him just standing there just, like...
There was a line of kids behind him, and he's just sitting there, like, laughing on this this water fountain.
Jeez. Yeah. But... So I I guess my point is is that there's a lot of time in between the first time you said to a doctor, something's wrong with my son, and them going, no. There's not.
And then them calling the hospital for you and setting up concierge check-in. So Oh, yeah. Yeah. I I mean, 582. Is that the number?
Five Eighty-Two11:16
582. Yeah. A number I don't think I'll ever forget. Yeah.
I bet you the day you asked him, his blood sugar was a lot lower the first time you asked the doctor is my point, but probably still quantifiable and would have led them to type one diabetes as well. I I don't know. Correct. Yeah. Did you switch doctors' offices?
Oh, boy. Once we got, like... They didn't put him in, like, what is that called? Like, ICU. They just put him to the children's unit.
So they didn't put them, like, in, like... I don't know what you call that. The critical unit or anything like that. They do have a peds area. So they put them in there, and I will never ever forget the stink eye my husband gave that doctor when she came walking in.
He... Because he knew. He knew that we'd talked to her in June and July. We talked to her, and I wanna say a nurse practitioner. So it wasn't completely her.
It was somebody else also. And she just had a look of, like, a tail between her legs when she came walking in. Like, oh gosh. They knew this, and I I pushed them off and just whisked them away. So, like...
Yeah. Needless to say, we we did switch doctors shortly after that.
Yes. Wow. Jeez. Yeah. Okay.
So the... Wee. So you're you're... I mean, I don't know how many times people can tell me this before all of you here. I should probably take more control over what's happening to me.
You know, like, not in, a online, you know, creepy, crazy, you know, conspiracy way, but, like, pay attention. You know, it's it's occurred to me that I've been doing this so long that it's because of, like, the temperament in, you know, I don't know, the country politics everywhere else. This this... What I think of as common sense thing that I used to say, which is, like, you know, you're really gonna have to be responsible for yourself. You can't count on other people.
I'm... Now now I sound like now I sound like a lunatic. I didn't... But I but I really think you just have to you have to realize that... I don't know.
Like, may... People make mistakes or not everybody is as concerned about you as you are or what... Whatnot or whatever. Maybe they're busier, and your health is still failing while they're off thinking, oh, I did the right thing, and they're all proud of themselves. You you know what I mean?
And you now stop paying attention to this issue because you went and said, hey. He's peeing and blah blah blah. They said that's not a problem. So now in your head, that's not a problem anymore. You stop thinking about it, and that creates a longer time gap before something else horrifying has to happen, like a zombie in your bathroom in the middle of the night, like, drinking from the sink.
And then and then you go, oh, maybe there's something wrong here. You know what I mean? Like, there's an example to be made here that you you were onto it, and they shoot you away from it.
Oh, yeah. Yeah. Yeah. And and, yeah, now today, in in today's times, oh, yeah, I believe advocating for your own health is just, like, your number one priority at this point. Yeah.
Yeah. I don't even think my wife cares if I stay alive as much as I do. What do you think of that? Like, you're all out I think you're all out there thinking everybody's on you. Oh, they'll get us.
They got us covered. I went to the guy. Did you? Oh, yeah. Did anybody hear the the the...
Why do I bother doing this, by the way, Racha? Did anybody hear the Coldwin episode where the doctors were selling drugs out of the back of the doctor's office?
Oh my gosh. No. I didn't.
That's a person who somebody would go to and go, oh, he's got me. No. He's selling fentanyl out of the back door. Okay. Count on yourself.
I don't know how many times I need to say this. Okay. So you, you you figured this whole thing out. Sounds like they had them in and out of there. Lickety bim.
I'm gonna guess three days. You'll tell me.
Oh, yeah. Yep. I think we stayed maybe counting the night that we got there. I think we were there for two more nights after that night. So about two and a half days.
Yep. And then they gave us some training and said, here's your prescriptions and sent you on your way.
And that training has set you up for nothing but success, and it's been smooth sailing since then. Tell everybody.
Oh, no. Absolutely not.
Wait. This is not what happened? You know, let's pause here. We'll put the ads here. We'll come right back and hear what happened.
Okay. Now go ahead, Rachel.
Here's Your Prescription, Good Luck15:23
He... I think we got, like, what pretty much everyone says, the whole... Here, you feed them 30 to 45 carbs, give them this many units, check again, you know, before lunch, and then again, feed them another 30, 45 carbs. Check again before dinner. Here's about enough test script...
Test strips to do this three times a day, and there you go. You're on your way.
But then after that... Right right... After that, they said, now this is rudimentary beginning stuff just to keep your kids safe for right now. You're gonna need to learn a lot more after this.
Yeah.
They they did say that.
Uh-huh. No.
No. Not really. What what happened? Did I tell you that or, like, somebody else or some guy on the Internet? Or how did you find all that out?
Yes. Oh, man. It's such a blur, but I wanna say, like, we didn't even know CGMs existed. They didn't tell us that those existed. Why would you?
Why would you? Ridiculous.
I would... Here's a few test strips. Like, it was to the point where that we were, like, nervous to, like, test strip him because we're like, are we gonna run out? You know? Like, they only gave you just enough.
Mhmm. I think, like, you know, my husband and I probably scroll on our iPads at night, beating on things. And I just remember, like, one night coming across a CGM, and I was like, oh my gosh. These exist. I'm like, you don't have to prick them.
You can see what their number is all the time. And I was like, we need these. And then, you know, you tell the insurance you need that, and they told us, nah. You don't need that. So For what?
With the insurance?
You need it for? Oh oh, you had to fight with the insurance?
Oh, yeah. Yeah. We fought fought with the insurance. He was he was diagnosed in August, so I can clearly remember. I I don't know when I found out about him, but at that point, they told me they needed 90 days of his numbers.
And I was like, like, starting from today? And they're like, we don't know. We just need ninety days of his numbers. And I was like, they sent me a little spreadsheet for morning, lunch dinner. You know?
Ninety Days of Numbers She Didn't Have17:25
What are his numbers for ninety days? And I'm an honest person, and I was missing a few numbers. So I sent it back to him, and they're like, we're missing some numbers. And I'm like, I I don't remember his number from forty five days ago. And they're like, well, we need ninety days of numbers.
So at that point, I was like, I don't know. So I just scribbled some numbers in those missing numbers and then sent it back to them, and then it was approved. But it was just... I don't know why we would have to go through so many hoops for something like that. You know?
Like, something
that's so necessary. I don't wanna sound like a conspiracy theorist, but is it possible that, one of the game plans of an insurance company is to keep saying no hoping you give up?
Oh, yeah. Yep. And we are very familiar with that at this point.
Yeah.
Oh,
yeah. I've... Again, a thing I've been saying long before the Internet sounded crazy. So, I mean, it's just... It just makes business sense.
Right? If you're if you're the insurance company, the last thing you wanna do is pay a claim. I don't know if everyone understands how money works, but you pay them money to have insurance, and their their hope and prayer is that you never need to collect. And then when you do need to collect, they say, well, are you sure? How about the...
How about I, I I feel like I don't wanna say this whole thing because it's very embarrassing, but I backed into my son's car, like, six months ago. Unbelievable. And, I I I, of course, I had to get it fixed. It's funny when you back into a car that you own and you insure both of them. You're like, oh, I've I've now...
I've damaged two of my own cars. I have to pay twice. There's no one to blame. Anyway, not... Neither near.
My son's car needs a hood and a bumper. And I... So I said, you know, so will you put a new hood on, new bumper, paint them, paint the fenders, and then, you know, so everything matches. And I said, no. We're not gonna paint the fenders.
I said, well, the car is over a year old. It's been out the sun for a year. It's not gonna look right. And they go, oh, you probably won't notice. And I went, no.
I'm I'm definitely gonna notice. And and they said, well, that's not part of the repair. Said, well, how is that not part of the repair? Like like, the car, it's it's his. First of it's my son's car.
He pays for it. But, you know, he's gonna have to resell that car one day. Like, it it needs to hold its value, and it's certainly not gonna hold its value if it looks like it's six different colors. And, you know, and then I, oh, we're not gonna do that. There's...
It's not necessary. Keep... You use the same... Just think about diabetes one time. It's not necessary.
You don't need that. It doesn't impact how the car runs. Blah blah blah blah blah blah blah. And I pushed and pushed and pushed. And one day, they were just like, yeah.
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Oh, yeah. Yeah. It wasn't This sounds exactly like insurance.
All of them. Exactly. Yeah. By the way, I didn't give them any new data. I didn't say anything, like, exciting or thoughtful.
I didn't write numbers down for ninety days. I just I just they said no, and I said yes one more time, then they said no. And then eventually, they went, oh, yeah. I got you. You got us.
And then
He's not going away.
Yeah. Oh god. Is this guy gonna keep calling? Alright. Pain his car.
And so... And it was that simple once it was that simple.
Oh, yeah. Yeah. Oh, yeah. I I have a feeling like, ugh, well, you know, we switch insurances at... Not every year, but maybe every two years, whenever we have to.
Like, my husband's work makes us, you know, switch an insurance. I I have a feeling, like, with most of the major insurances, I feel like when my name pops up on their screen I'm calling, like, there's a note somewhere that says, oh, no. It's this lady.
Maybe the background turns red on the screen and it flashes like an eighties movie about the about about, like, nuclear holocaust. You know what I mean? Yeah. So
They're like, this lady's persistent.
Well, good for you.
Yeah.
Yeah. You know? I screamed the f word into a phone one time so many times. I can't believe that the person on the other end didn't quit in the middle of the call. I would have if I was at...
I would have been like, I don't know what I'm doing. This is a gut wrenching job. This man is right. I am now taking the brunt of this for no reason for $9 an hour back then probably while the company is, like, you know, putting money putting money away in socks and burning in the backyard. They got so much of it.
So Oh, yeah. Well, good for you. What... So what what are some things you've had to push back about?
Fighting for NovoLog23:33
Well, we we obviously did the fight for the CGM. I remember when he was first started, I wanna say he was on, like, Humalog or something like that.
K.
We didn't feel that worked very well, so I wanted NovoLog because I read that it was better. Whether it is or not, I don't know. I remember arguing with them about wanting to try a different insulin, so that took, you know, some arguing and appeals. And then, of course, most recently, he is on the Afrezza after being in the trial. So...
And when that trial ended, obviously, the FDA approval comes much later. So we wanted to continue using that, and we had to fight with the insurance to use the Afrezza. That was in... I wanna say 2023 was when we argued for the Afrezza. I had to do two appeals, and then I asked for an external review.
And, magically, when we did the external review, they approved it.
Yeah. Oh. Yeah. Not dissimilar to when you call the doctor's office and the person on the phone, you know, was just somebody who's like, I'd like to get out of the house more. Maybe I'll get a job.
You you you... Which got... I'm glad they got a job. It's all good for me. But that person's now giving you medical advice when you're calling in about your kid.
Should I be worried? I mean, I don't... And I I wouldn't be. And you're like, what's the person on the phone at the doctor's office? Meanwhile, it's my mother-in-law who wants to go outside.
Get what I mean?
Oh.
You're all doomed. Good luck. I have argued about so many things that I believe if I sat here and tried to remember them all, it would take me ten minutes.
Oh, yeah. Yeah. No. I just I just remember arguing with several different insurance companies. The one we're with right now currently, I wanna say they've probably been the most agreeable, to tell you the truth.
So I do like who we're with now. I'm gonna be really upset when we have to switch from them.
I like most agreeable is like a high watermark. Yeah. Like
It's like the bottom bar here. You know?
He comes home after work. Oh, is that how we're measuring this? Alright. So I I wanna know more about the Afrezza. When, do you hear about it first?
How do you get involved in the trial? What year is that? Kinda walk me through it, please.
Okay. So I wanna say I was visiting a hold of high school friend down in Indianapolis. And I went down there and met with her and her husband, and were like, let's go to this restaurant. And our friend owns it or co owns it, and we're like, okay. So, of course, the co owner comes and sits down with us, and he's like, hey.
Do you wanna try all my new my new menu items? We just redid our menu, and I have a lot... Bunch of low carb items on it, like, you know, like, cauliflower wings, cauliflower pizza, a bunch of cauliflower, lots of low carb options, chicken. And I was, like, intrigued by, I guess, mainly his menu. But then more interestingly, when the food came, he gets out this inhaler and, like, puts a cartridge in it and inhales it.
A Restaurant Owner Inhaled at the Table26:41
And I see him on his phone, and I'm like, what are you doing? And he's like, taking my insulin. And I was like, do you have type one diabetes? And he's like, yeah. And he's...
He looked, like, surprised that I knew too. And I was like He
said, lady. Son has. Like, in the hell do you think I'm making chicken wings out of cauliflower for? You think I'm doing it for fun? Exactly.
Oh, yeah. So, yeah, he he... That's when I first knew Afrezza existed. And I was like, I think that my mind was just absolutely blown that, like, such a thing existed. You know?
Mhmm. Yeah. So he he he shows me his Dexcom and, like, shows me his line, and it's, like, pretty pretty flat. You know? It was nothing like we were seeing for Liam, obviously.
Yeah. Because in... What would that be? 2020... I wanna say that's, like, 2021.
So Liam would be... It'd be 6, seven, eight. Doing math here. I wouldn't say he'd be nine at that time. So I was
I'm like I'm enjoying I'm enjoying my conversation with you, but you counting is not math. I just want you to understand.
Of of all the things that I have to deal with with diabetes,
it's like the math. You're like
I'm the worst at math.
You're like, one, two, three. I'm doing math. Oh my god. I think she's just counting. But...
Okay.
I am counting. Yes. Yeah. Is not my strong suit. But, yeah, I
remember being, like, what? Nor is describing math. Again. Sorry. I'm sorry.
I think I'm giddy. I must have relaxed over the weekend.
Must have been a good one.
I did. I did a little project for myself. It's not for now, but go ahead.
Yeah. I just remembered talking to him and going, my my son's graph looks nothing like yours. And he's like, yep. It's Zofrezza. I just inhale it, and it works quick, and it's out of the body quick and all that.
And I was like, okay. And I just remember going home after that weekend, coming home to my husband and, like, mind being blown and explaining to him that there's insulin that you inhale. I'm like, it's powder. And, like, he's like, okay. And I'm like, just just amazed.
You know? And then, like, so that was probably, like, maybe summer of twenty twenty one. And then, like, one night, I'm scrolling through diabetes stuff, and something pops up that they're doing a pediatric trial for children. And I'm like, woah. So I told Liam because he is like...
He's probably 10 at that point because he'd had his birthday. And I'm like, hey. They're doing this trial for children for inhaled insulin. Yeah. And I showed him, you know, the insulin online about it and everything.
And he was like, I want that. He's like, yeah. I want that. And I'm like, okay. So I contacted...
She Found the Trial Herself29:23
When you go to the clinicaltrial.gov, it'll tell you all the locations that are doing the trial. So I saw... What is it? IU. IU down in Indy was doing it.
The IU Medical. So I contacted them and was like, I'm interested in the Afrezza trial for my son. He's 10. And I don't think they wrote back right away, but eventually, they wrote back, and they're like, yeah. Due to COVID, it's delayed.
We're not enrolling anybody at the moment. And so
decided not to have people in health stuff during COVID.
Yeah. Yeah. And this is 2021. So, yeah, I guess COVID was still still a thing.
Mhmm.
So, you know, I said, okay. Well, that's fine. Let me know when you are. Definitely still interested. Let me know.
So I wanna say in 2022, in January, they finally wrote me, and they're like, we're we're gonna start enrolling people. And I was like, okay. Sign us up. So January, February, I think we went down there for, like, a preliminary type of, I don't know what you would call it, preliminary... I don't know what you call it, investigation, I guess, of him and if he was eligible.
They're gonna give him the once over, kick the tires, see what happens. I gotcha.
Yeah. See if he was a good fit. You know? So you had to have an a one c of... Oh, what was it?
Glad, For Once, About a Higher A1C30:42
We barely made it. You had to have an a one c of more than, like, seven point o or 7.1. So they tested his a one c that day, and he was, like, 7.2. Like, we barely flew over the radar to be able to get into it. Like, if he would have been any lower, they would have told us, see you later.
Sorry. You're doing too good of a job.
Right. Right. I was like... Because I feel like right before that trial was when we finally... What was that?
Five years in, we're getting the hang of it. And so for once, I was actually happier to have a higher a one c because I was like, oh, you're eligible. Barely. So then in... They had us back down in March or April, I think March, had us back down for a...
I don't know what they call it. They had them sit... They told us it was gonna be a long visit, and they were absolutely right. It was, a half a day visit. You go down there.
They take your number, your blood glucose number. They have you eat, like, a 15 to 20 carb, like, Cliff Bar, and then they had him inhale. And then they, like, see how they had to wait till his number got down to a certain number again after eating it. So, like, we we had to wait, like, an hour and a half after his first dose, and he was high. And then, like, an hour and a half later, they gave him another dose.
And, like, yeah, we were there, like, almost a half a day to get his number down because they were only doing, like, the four units instead of the eight and twelve with him at that point on that day because, obviously, they don't wanna, like, overdose him on insulin while they're at the hospital. Yeah, we spent, like, half a day there, got his number back down to, I guess, would say in range, and then they let us go, and that was it. They sent us home.
They just needed the data of what happened to him during that process.
Seven Tries at the Lung Test32:25
Yeah. Okay. Yeah. And they also did lung testing too. I forgot right before that.
They did, like, lung testing.
What's that look like? What's lung testing like? Like, blowing into a tube consistently, that kind of stuff? Are they doing lung?
This one was... It's way more, intense than the one that our... His endo just did last year. But the one that they did there was, like, this big mechanism that he had to have. He blew into this, like, tube.
He had to, like, plug his nose while he did it. So... And they said you have seven attempts. I wanna say it was seven, and you had to pass it four times. So, I mean, it was great.
We had, like, all the nurses and all the doctors in there, and we were just rooting him on. Like, I wanna say the first one, he failed. The second one, he passed. The third one, he passed. The fourth one, he passed, and then he failed again.
So then he only had, like, two or three more attempts or something like that. And so we're all like, you gotta get one of these. You know? And, like, we are just all rooting him on, and finally, he passes the fourth one. So, like, he didn't have to do the other two or whatever.
Yeah.
So, like, yeah, he passed this lung test. It's something to do with your lung capacity. I don't completely understand it, but it was it was a sign off to say that his lungs were healthy, I guess you could say. Because he he doesn't he doesn't have asthma or anything like that. So
No one yelled don't blow this in the middle of it because it would have been hilarious.
Oh, yeah. And then I and then I don't think it was that visit. Maybe it was the next visit. It was a very slow progress. They they say that we're gonna go in another room, and we're gonna hit a button, and it's gonna be very randomized.
You either, a, for the first six months, continue on your same regimen, and then button, you get the Afrezza for the whole year. Well, at that time, Liam was like, if I don't get Afrezza for the whole year, I don't wanna do this. And I was like, well, that's not how it works. So they went in the other room, pushed the button, came back, and they're like, you get the Afrezza for the whole year. So he was happy.
I was happy. Everyone was happy.
What's this magic button do?
It's some randomization that I do... That they do for the clinical trial. I think they wanna be able to see
Kinda what I'm sure it's They randomly... So people pass, they get to that point, then the randomized button tells them what bucket to drop the person into.
Yeah. Probably, like... I don't... I wouldn't believe it's some, like... It's...
I guess it's probably an alternative to a placebo because they obviously can't tell you to quit insulin for six months. But... Yeah. Something to compare it to maybe or a baseline. I'm not really sure.
But Very interesting. Happy.
Yeah. I wonder why things take so long. Yeah. I know.
I know the FDA approval was, what, just a few months back.
So Yeah. In 2026.
Yeah. Yeah. And we were in
it from Your kid's gonna be shaving by the time they get this together.
Oh, yeah. Yeah. So we were in that from... So that was, like, March 2022 till March 2023. So he's been taking Afrezza for, well
Four years?
Over four years now. Yeah.
Alright. So let's talk about what it... Like, functionally, what it really means. He gets on the study. They're giving him Afrezza as his only insulin source just for high blood sugars.
How do you use it?
Correct. They were pretty strict about that. They were like, we don't really want you messing with anything else, just the Afrezza. There were... They said if by chance you use, you know, your old NovoLog or whatever, we need to know.
And I wanna say we did have to use the NovoLog one time, and I had to report it to him. I said we did use it. It was... He got sick, had a sore throat, cough. You know?
I mean, it was winter that year. Who knows? And he got sick, and we did have to use NovoLog. And I I did write them, and I was like, I just want you to know. Like, he he couldn't inhale.
He said his throat hurt too bad. So we did use NovoLog, and and I don't know. They just said we appreciate you telling us or whatever. And I think they asked us what we used and when we used it and what dates or whatnot, and then that was it. Because they were giving us CGMs at that time for a whole year, that was reporting the data to them.
So maybe they just had to, like, do something with the data for those.
Well, Rachel, so so for this first full year, he's using a basal insulin. Right? Which one?
At that time, he was on the... Is it bas... Basaglar?
Okay. Basaglar. Yep. Basaglar. Basaglar.
Who cares?
Yeah. Really. Say that.
Yeah. May... Maybe they should just try picking better names.
I know. They're all hard.
So there's a reason behind that, but it's boring. Anyway, so he's he's shooting in insulin once a day. And Yep. Every time he eats, he's inhaling. Every time he gets high, he's inhaling.
How many times a day do you think he inhaled the insulin?
Obviously, once for each meal, and then I would say each meal, pretty much each meal requires a follow-up because it's in and out. And then if you're eating fat or protein, obviously, that slow rise you get afterwards. So I would say he was at least inhaling six times a day. Okay. You know?
And probably even more. Maybe six to eight times a day.
And when you and when you entered the trial, his a one c was 7.1 ish, like, under seven two. Right?
Yeah. It was, like, 7.2 because you had to be higher than 7.1 for the trial.
Seven Two to Six Three37:48
Yeah. Okay. And then a year later, his a one c after inhaling insulin for a year was?
We hit an all time low that we'd never seen, 6.3.
Okay. And what about variability? Was he bouncing around up and down a lot? Did he feel well? How did he make out with activity, all the stuff?
The... I'm gonna say the truth. When you first start using the Afrezza, it's a learning curve as with most, you know, insulins and the whole disease in general. So the first month or two, we had quite a bit of a roller coaster. I'll never forget.
Then the CEO Called Her38:28
I I joined the Afrezza Facebook group and made a post thinking maybe some people could help me that have been using it much longer. And I was like, we just started this. We're in the trial. I said, we are just like... He would go low, and then we would treat the low, and then he'd go super high.
And then we'd treat him again, and then he'd go low. So it was just a bunch of roller coaster, and I... I'll never forget. I thought, oh gosh. We're gonna get kicked out of the trial because the CEO, Michael...
I'm not gonna be able to say his name. Castagna.
Okay. He's been on the show. I don't know how to say his name, so don't feel bad.
Yeah. It's I think it's Italian. Castagna. I don't know. He must have saw my post because he's in that Facebook group, and he was...
He wrote me and was like, hey. Do you have a minute? Can we talk? And I'm like, oh gosh. Am I gonna get us kicked out?
I thought, oh, no. What did I do? And I was like, yeah. We can talk. And he's like, yeah.
Send me your phone number, and I'll give you a call. And gave him my phone number. He gave me a call, and he's like, hey. I just wanted to speak to you, like, you know, about the trouble you're having with the roller coasters and everything. He's like, what's what's happening?
When are you taking the Afrezza? Are you doing it before you eat, during, or after? What... What's going on? And I explained to him, you know, we're doing what the trial said.
We're taking it right before he eats, and then we're experiencing lows. And he's like, when are you experiencing the low? And I said, you know, maybe, like, an hour after eating and after taking it. And he's like, yeah. He goes, I have a feeling if you were just to...
He goes, I know it's hard not to treat a low. That's what initially he said. He's like, but if you were to kinda just leave that low alone, I have a feeling it's right when the Afrezza's wearing off, and you will see him pop right back up, but not, like, super high, but, you know, coast back up.
Yeah. Rachel, can I ask what what did low mean? What's the number?
At that time, I think we were still probably maybe considering, like, 75 low. Nowadays Yeah. Yeah. I'm more or less consider, like, 65.
You mean when he got to a perfect blood sugar, you gave him food?
Yeah. We were we were those people for sure. We were, like, thinking seventy and eighty was low.
Can I be clear, though? Like, is that five years into his diagnosis?
That would be... Yeah. That'd be, like, four
four and a half. Yeah. Let's get off the Afrezza train for half a second and talk about that. Yeah. How did you make it four and a half years thinking 75 was low?
What was going on?
Under One Eighty, You're Good41:01
I think it was because mainly Liam felt low at that time. Because, I mean, he was still sometimes... That was back when you thought one eighty was good. You know? Like, that's what the doctors were telling you.
If they were like, if you're under one eighty, you're good.
So you're so you're living... That's where the seven two seven one blood sugars... Or a one c is coming in. Is that one eighty for you, you were like, don't do anything. This is fine.
Yeah. Doctors told us we're doing great.
Gotcha. Got you. You're doing great. You remember remember us from the diagnosis time? We know what's going on.
Don't worry. Oh, yeah. And then you're fine. Is he gonna get sick later in his life? No.
Probably not. No. I mean, you won't know us by the time it happens. So Right. Okay.
So living at one eighty, and then... So 75 feels low to him. Are you panic? Like, chain... Like, when...
Is it... Like, put yourself in that in that person's body back down. Did 75 feel scary to you?
I don't know about panicking so much, but it just, like, sometimes he would complain. I feel low. My legs are weak, you know, like, shaky. And Mhmm. Well, when your kid's telling you, you know, I don't feel right, you just...
I guess you just are like, they don't feel right. So... And we were also probably doing the same mistake where you're like, oh, you know, what is it? 15 carbs and wait fifteen minutes and then give more. So, like, it's no wonder now, like, that he was going 200 and up when you're treating like that.
This this poor Michael's on the phone, and he's thinking, my insulin has gotten this kid's blood sugar into a perfect spot, and then they're feeding him again and making his blood sugar high and saying this Afrezza doesn't work. That's probably how it felt to him. He was probably like, ugh. It's... But Oh, I'm sure.
I'm certain of it.
He's he's like he's like, I'm killing myself over here, and this is what's happening. So... Okay. Well, that's really interesting. So before you found Afrezza, had you found the podcast?
Had we found it yet? I think we had. I, like... I think I found the podcast probably around COVID, probably around, like, 2019.
How come my voice isn't in your head then at that point?
I know. I feel like we were getting there because, like, the 7.2 that we had right before the trial was, like, the best we'd had. So I feel we must have been kind of on the train of, you know, You were heading in that direction. That's too high. I think we were heading in the right direction had we even not have joined the trial.
Yeah. Yeah. I think we were getting there
Fair enough.
That was the lowest a one c we'd had prior to Afrezza.
Also, not a judgment. I'm just... I'm trying to lay out for people that, you know, four and a half years in... I'm assuming somebody being diagnosed today is like, well, in four and a half years, I'll understand it completely. You know?
Yeah. It can't be it can't be otherwise. But what what happens that slows it down? Is it just life? Is it, like, you know, you don't have time to really dig in so incremental change happens?
It's... I mean, why is the... Why does it take four and a half years or more?
Yeah. I don't know. Like, I think half of it is when the medical professionals tell you you're doing a great job. Then... Like, because what what was...
Is it the ADA? They had they say your kid should have an a one c of 7.5 or lower. So, like, if you have 7.5, I feel like they were telling you, you're doing awesome.
Yeah. Yeah. Yeah. You're
listening. Reality... I mean, you're doing okay, but I I wouldn't say great.
I hear you.
So now... We now obviously strive to be closer to, like... He's in his teenage years now, so it's a little rough. But I... The last since the Afrezza, we have always been under 7.0 now.
I think his last one was 6.5
What makes it rough?
The month.
What makes it rough?
Fourteen and Six Foot Three44:59
He's he's a growing boy. He is gonna be 14. He's six foot three. He's always hungry. He always wants to eat.
We try to fill him up, but he he just likes to eat. And I think just sometimes he gets so busy. Sometimes he doesn't dose also. And then we'll notice him go up, and we'll be like, hey. Did you dose?
And he'll be like, oh, nope. I forgot. So I don't know. Maybe he's just too busy at this point to to dose, and he does forget every now and then.
He's 14 and six three?
Oh, he'd be 14 at the end of the week, but, yes, he is six foot three. Yes.
I don't know what it is with you ladies. I'm like, no. Not yet. He... He's not 14 till Friday.
Yeah. He's 14. So he's 14. And I... Every time I say to my wife, like, she's 22.
She was not till the summer. I'm like, what are you talking about? It's a week from now. Is your husband nine feet tall? Are you tall?
What's going on?
We have no idea. I'm five foot ten. My husband is six foot.
Yeah.
Yeah. Liam is six foot three. Now he does have... My my husband does have another son, who is 28, and he is six foot eight.
So Yes. So you're... So it sounds to me like you're holding Liam back from from from true height greatness. Your your husband is a six eight son?
Yes.
I know we don't I know we don't like to talk about her. Right? How tall is that kid's mom?
I wanna say she's, she's about the same height as me because, they got married.
Got a type. Okay.
Yeah. Yeah. She's, like, six foot. I wanna... Or, no, she's, like, five foot ten like me, I wanna say.
Well, you're you're tall. I mean, five tens, a a respectable woman's height. You know what
I mean?
Yeah. Yeah. Yeah. Oh, yeah. Alright.
So this kid is just eating and growing.
Yeah. We always say he's got a hollow leg or something. He's just always hungry. Yeah.
But where in the country are you? Are you are you growing one of those offensive linemen that I'm gonna get to watch ten years from now on television, or what's going on?
Well, we are in Indiana. I will tell you that. So we do grow a lot of corn. He actually is enjoying soccer.
Oh my god. He's so far from the ground, though. I was
I know. We we make a joke. He started playing last September, so he's been playing for almost a year now. And he started out in goal because
He filled the whole thing.
Choose. Yeah. Because he... Yeah. I mean, yeah.
Look at the They were
like they were like, stand him over there. Yeah.
He did goalie for maybe, like, six months, and then he's decided he doesn't wanna do goalie anymore much to me and my husband's disagreement on that. But we're like, you do you. So he has been starting to play the field now, and he plays soccer, like, twice a week. And then he also practices on his own in the backyard. So he...
He's very fairly active. So maybe that's why he's always hungry. I'm not sure.
Is it crazy to see a little kid running around in a giant body?
What's crazier is to see him on the field with all the little kids. Like, the kids that are, like, so short. Like, I... I'm... I often wonder what do the other parents think.
Like, oh, like, where's this kid's birth certificate? There's no way he's the same age.
They probably look at it. To them, it's... It just probably looks like a movie where he's just a giant running through a field of small things yelling, move, and just throwing things out of the way.
I know. He gets so many fouls because, like, he just touches someone and
And they go they go tumbling that he looks guilty. He's got the reverse problem of Joel Embiid who gets fouled constantly, and they're like, he's fine. I'm like, just because he's bigger than everybody else doesn't mean you weren't fouling him. Exactly. Yeah.
Yeah. You're gonna... You'll see that too. Well well, it's pretty interesting. Well, I mean, listen.
I think you're doing a terrific job. I'm just trying to understand, you know, like, the pattern of what happens. I also think it's fantastic that you had to do a a Fresa trial in Indianapolis, the home of Eli Lilly. That has to be like a... Is it a thumb in the eye on purpose from Afrezza?
I don't know. But but, so he... I I I just wanna get back to this because I'm not sure. He does not use any other insulin other than slow acting injected Enafrezza for years now?
Correct. Yeah. I I could not even recall to you. It was probably maybe once since the trial. I can't even recall to you the last time he took NovoLog.
Even when he's sick now, I just kinda try to persuade him to take a drink and then inhale the ombreza and then take another drink, you know, like, to try to... If it's a sore throat type of thing.
Mhmm. Mhmm.
And and he does it. So, yeah, I
Can you Yeah. Can you describe the difference between managing that way? And did you have a pump prior to that, or was he MDI?
Multiple Daily Injections, Multiple Daily Inhales49:47
MDI. Yeah. So we still claim he's MDI. We say multiple daily injections, multiple daily inhales. Yeah.
So he's still MDI is what I consider him. He did. He's never had a pump.
Did you make that up, or did they?
I made it up myself.
You're supposed to say, that's mine. You can't have it after you say something like that.
I need to copyright that.
Yeah. I... Because I... Listen. I think we're t minus six months to an Afrezza ad that says m...
I'm MDI, multiple daily inhales. And and I know. Then you're
gonna and
you're gonna scroll by and go, son of a bitch. And, like
I have a few more, I have a few more, like, inhale jokes too. Maybe I shouldn't say
those ones. No. No. Keep them. I'm about to steal yours.
That's just... It's such a... I can't believe they haven't thought of it yet, or maybe they have. Maybe. I don't know.
Okay. It'll be just coming. Yeah. Yeah. But but what's the difference?
Cons, or All Pros50:41
You know, like, tell me... Are there cons, or are they all pros?
I'm trying to think of really some cons of it. I mean, because I've heard through the grapevine, they're gonna be coming out with, like, twos and different different doses. So, I mean, the con might be that you're restricted to four eights and twelves. So, I mean, yeah, that's a con, but I think they're working on that. The pros are just how quickly it works.
I don't know if it's something with Liam and his body, but he... I feel like food, once he eats it, it hits his blood sugar so quickly. I don't know if his body just digests it so quickly or what, but, like, we were pre... We did get pre bolusing from the podcast, so I will tell you we did learn that. Nobody really spoke much about that to us at the doctor's office.
So we did get that from the podcast. I started telling my husband, we need to start getting insulin into him before he eats, like, a half hour before. It got to the point where we were, like, preboiling him an hour before we ate.
Well, at a at a one eighty blood sugar.
Yeah. Yeah. Try to get them in range before we ate.
Let me say for clarity, you're not pre bolusing a one eighty. You're correcting the one eighty. Yeah. Yeah. And...
But using more insulin so that when the food starts up, it doesn't just bounce the other direction right away.
Right.
Yeah. Yeah. Yeah. Yeah. I...
It's so interesting to hear you talk about it. It's... I... You know, I try to remind myself all the time that everybody's not in the same place. And sometimes I get a little, like, confused thinking, like, everybody listening is just, like, kinda has it already.
You know what I mean? Like, it gets the whole thing, but it... That's not the case. And and four years into it, quite having it all together at that point, I don't think it's uncommon at all. I think it's actually probably more common than my experience allows me to believe from the people I get to talk to.
But Oh, yeah. You... Like, you're not doing anything wrong. You can... If doctors aren't listening, you twice told the lady not to worry, and twice it leads to problems.
And and then she's trying to pick her way through it and figure it out. It takes time. You make them nervous or you make them complacent by telling them, oh, you're doing great, you know, whatever that whole thing ends up doing to the psyche. And so you have to experience these problems over and over and over again till one day you just say to, you know, your husband or he says to you or whatever, like, I think we should be doing something different here. Like, you know, you could end up wasting ten years figuring that out.
Oh, easily.
Yeah. Yeah. Yeah. Of of one eighty blood sugars and calling it good. And if if doctors are listening now and they're like, one eighty is good.
Like, I mean, compared to two eighty, sure. It's better than one ninety. It's not better than 75, which apparently you were able to reach. And then as soon as you got there, you're like, oh, no. That's so wrong.
It's a 105 points below one eighty. I gotta fix it. You you know? Like... And the poor kid feels the way he feels because his body's not even used to being in a in a in a more stable, healthy range.
So he feels better when he's high. And then you start getting that pressure of, like, well, he doesn't feel good. We have to make his blood sugar higher so he feels better. Like, it... I I don't...
Like, does everyone not see what I'm saying? Or... You know what I mean? It's... It's just a very strange way to put this all together.
And then you just happen to walk into the Afrezza trial and never really kind of... You're almost like you're almost like when Darth Vader... Before he started Vader starts his training, but then doesn't finish and leaves. And so, like, you were, like, you were kinda going through your process, and then you're like, you know what? We're just gonna go inhale insulin instead.
And you would... Not to say not to say that I wasn't calling insulin the dark side. I was... I wasn't calling inhaled insulin the dark side. I'm saying, like, you were halfway through learning something, and you just pivoted hard in the middle of it.
So do you consider yourself understanding Afrezza now? Because you you did a thing earlier that all Afrezza users do. You start going like a four, an eight, a 12. You start throwing these numbers out. No one listening knows what the hell you're talking about.
And and you guys say it like, oh, there's a four. There's an eight. Like, what should I do here? Do an 8. Do a 4.
Do a 2. Do a 3. Like, no one... Again, no one knows what you're saying. So there's cartridges with certain measurements of powder in it, whatever, Afrezza.
And you what do you do? Do you do it by carb counts? Do you do it by vibe?
Yeah. I... Initially, they were telling us to, like, count the carbs and were telling us, like, a four unit is more like two units injected. You know, an eight's more like five to six units injected, and a 12 is like eight units injected or something, you know, along those lines. They had a little chart for us telling us how it compared to injected.
So at that time, I can't remember what his carb count was or what we thought it was. But currently, today, I wanna say, like, for breakfast, he's like a one to five carb lunch, more like a one to eight or 10 carb, and dinner, again, back to one to five. He's definitely more like... I don't know if you wanna call insulin resistant or not, but, like, morning and night, he needs more insulin. During the day, like, lunch, not so much.
Not so much.
Do I count carbs still? Yeah. But not, like, as exact as I used to. He... He's a creature of habit.
He eats a lot of the same things. So, I mean, we're lucky there. So, like, I know
To repeat it.
What to give him for a pizza, what to give him for his breakfast waffles. You know? Like Mhmm. He he eats the same things pretty often. So...
And then he has, like, that... I think people call it, like, the foot to floor where he goes up in the morning on his own type of thing. So we account for that too. But... Yeah.
So when you
say we kinda count carbs, kind of.
So I I hope one day you listen back to this and go, oh, this is why people don't understand inhaled insulin. So
I feel like it's a... It was a lot of trial and error. And it's like, I can't, like, tell somebody, oh, yeah. If you're eating pizza, you need, like, to take a 12 because it's it's... You know, you don't know what their carb ratio is.
So it's like, I can't really tell anybody how much to take I'm not due to
Yeah. Yeah. No. I'm not saying... First of all, I'm not saying that there's not a...
Like, you couldn't find a vibe and do it. I I don't think that at all. I just think that right now people have... This is my insulin to carb ratio. This is how many carbs are in this.
If I pre bolus it, then I get my insulin ahead of carb, you know, and then Right. This number kinda holds it steady. That that kind... They have a way of thinking about it that that it's linear. And Yeah.
And I don't know that this isn't. I just know that I keep trying to get people to explain it, and then they just started saying there's a four, an eight, a 12. And I go, okay. Okay. What?
I guess the best way I could explain it is I'm less fearful with the Afrezza than I am injected.
You don't see the lows?
I don't see... We don't see lows as much. And if we do see them, they're... They don't last as long. I'm just less fearful with the Afrezza because I know how quickly it lasts.
Like, it starts working. Mhmm. And then I know how long it's gonna last in his body and when it's gone. So, like, it's actually really great before sports. You know, some...
A lot of people when they're doing inject, it'll say... Or or if they're on pumps, which I am not familiar with, but people are like, oh, I'm putting them in sport mode or or or we don't give doses of injected before sports because it'll lead to lows. But, like, with the Afrezza, if he's going into soccer practice and I notice he's one sixty, I I... I'm not really fearful in telling him, hey. Take a four unit right now before soccer.
And, like, he's gonna go run out on the field for an hour with a four unit in his body. I'm just not scared because I know that it's gonna be out of his body again in, like, an hour or so.
So it knocks it knocks the number down but doesn't keep trailing afterwards?
Yeah. There's not that lingering effect like we would see with injected. Like... Because sometimes you'd see the effects of the injected for, what, three hours still? Like...
So I think... Yeah. I guess... Yeah. That's that's definitely the pro for me.
It's just how quickly it works and then knowing how quickly it's out of his body. And then if for some reason after that hour he's still high, I can redose him so much sooner than we used to be able to previously.
Do you have
If you aren't stacking it.
Yeah. No. No. I understand. Do you do...
It sounds amazing. Do you have ever have thought of, like, oh, I'll put them on an AID pump, and then I'll just use the Afrezza for high blood sugars, or is that not a thing that's occurred to you?
He's Never Wanted a Pump59:44
I do know a lot of people do that. But for us, Liam has never wanted to have a pump on his body. Mhmm. And respectfully, I I guess I just say, okay. If you don't want another device, that's fine.
But I have, like, made a hard... There is no option on a CGM. Like, you absolutely do need to have CGM on you, which I don't think he really minds having that on. But he's like, I don't wanna pump. I don't wanna pump.
I have to change every three days or, you know, or another thing to go wrong. He also, he's intuitive. He knows that the Dexcom sometimes can have inaccuracies. And he says, that scares me. What if my pumps...
Or my Dexcom's saying I'm high, but I'm really not high, and then it gives me insulin, and I didn't need that insulin. Or... So he... I don't know. He...
I don't wanna say he's fearful for... Of a pump, but
he's No. It's not on it's not on no one's radar. No one's thinking about that.
Yeah. He's not thinking about it. And I said, you know, that's fine with you. Maybe one day in the future, you'll want one. And, you know
Or maybe not. Listen. Maybe not too. Who... I don't...
I I couldn't possibly care less. I'm just I'm just trying to get your thought process around it.
Oh, yeah. Yeah. No. We... We've definitely thought about pumps, but he's just never.
I just feel like it'd just be a whole argument to get him a pump and have him do it and everything. So... And we have friends. We have quite a few type one friends, and I don't know. I just hear about their pump issues, and I'm like, ugh.
I don't know if I want that headache.
Why why do you have so many type one friends? Are you collecting them like Pokemon?
Yeah. We are. We are. That's so funny how, like, you you know, we knew nothing about type one diabetes. And then we had a...
I had a friend that go, hey. My other friend's daughter was just diagnosed, like, you know, so long after Liam was. And then and then my husband's like, hey. My friend's son was just diagnosed, like, six months after Liam. And then...
So we have those friends. And then we also went to a family diabetes camp down near Indianapolis, Indianapolis, like, two or three years ago, and we met. Funny thing is is they live where we live. They drove two hours to this camp. We drove two hours to this camp to find out we live in the same city.
So we're, like, pretty good friends with them too. We have a son.
Could've done that at a Panera Bread up the street, apparently. But... Yeah. Yeah. Well, that's pretty...
That's awesome. Does he enjoy knowing other people who have type one?
I think so. I don't... I don't know. I don't know if it's just like... Maybe it's me.
Maybe it's me talking to parents. They have to deal with diabetes too.
Yeah. Well, how are you doing with all this? Is it is it impacting your happiness and health?
I don't think as much as it used to. No. I don't think as much as it used to. I feel like now this is just our new normal. You know?
Okay. Is your husband very involved in it or no?
He will tell you that I am very controlling about the diabetes management. As with probably most couples when they have a child with diabetes. So I would say I do a lot of it. He... I I had a job where I went into work a few days a week, and then he would have to manage it.
He knows what to do. He does know what to do. He he knows how to handle it. We do have sometimes, like, little discussions about how much should he be taking, and he'll say this, and I'll say this, and then we'll end up, like, in the middle. And then we'll give him a dose that's in the middle of what we both think or something like that.
But
Okay.
I would say I do quite a bit of it. But he knows what to do.
Who's more... Is he more aggressive than you are?
Yeah. Yeah. I wanna say he's more aggressive.
Do you wanna know how I know that?
Because you are?
No. Because you talked about a seven a one c, and and you're following what you wanna do. So I figured higher a one c, less insulin. He must be the one who's advocating for more insulin.
Yeah. Yeah. He does... He he wants to he wants to knock it down and get it down. And whereas I'm, like, more ear on the side of caution.
You know? Like, I'm, like, trying to prevent the lows. And that's probably, like
Have you
So because we deal with the lows differently. K. You know, the whole 15 carbs, wait fifteen minutes, I think that is absolute crap. So I like to say he needs... You know, like, we like Skittles or gummy bears, you know, where they're two or three carbs a piece.
And I'm like, he needs maybe, like, five to seven carbs, and then let's wait longer. And my husband, when he goes low, sometimes I think he gives him more carbs than necessary. So
Does your husband panic?
Yeah. Yeah. So he's... What's that?
Does the husband the husband... Does your husband panic?
I don't know about panic, but he just gives him more carbs when he goes low than I would.
Because someone said 15 carbs fifteen minutes to him one time?
He definitely has heard that advice. I don't know if he still agrees with it or not. It's interesting. It also might be... It might also be Liam just saying, I want this when he's low.
It just lets him pay.
And and he lets him.
And you go, no. Yeah.
Yeah. That's try to I try to avoid Lowe's.
I've I've, like, I've, like, pulled a juice box out of Arden's mouth. No. No. No. That was it.
Like, it all
You only need to have a juice box.
Yeah. Yeah. Yeah. Interesting. It's all...
I mean, it's all incredibly interesting. There's a dynamic going on there that, you know, has an impact. And it's funny too. Like, I I thought to say something to you, and I didn't want it to sound critical. So instead, I'll just preface it by saying I'm not being critical.
And you said you're guarding against Lowe's. And I wondered what if we called that I'm meaningfully keeping his blood sugar higher. Would you feel the same way about it?
No. Because I wouldn't say I'm, like, keeping it higher. I just try to avoid getting him to, like, 65. 65
is your date. I don't want that either. I'm saying that if you're if you're average... Going back, take... Before the Afrezza, if you're sitting at one eighty and saying, well, at least he's not low, and...
But you're covered by the ADA and the doctor going, you're doing great. So you're not even saying at least he's not low. You're going, this is awesome. He never gets low, and and we're within the number they gave us. It...
You know what I mean? Like, if you could look back on that moment now and I said to you, hey. His blood sugar was one eighty, but you'd preferred it to be 80. It's over a 100% higher than it should be. Like like, I think a lot of it's just framing and and words.
Do know what I mean? Because I hear people say, like, well, I'm just guarding against lows, and you are by keeping his blood sugar high. And Yeah. But but you don't think of it that way. You think of it as, you know, because the guardrail gives you, you know, the...
Gives you the ability to go, no. I'm doing the right thing. It's still okay. Everything's okay. But it's just all semantics.
You know what mean?
No. Absolute... Absolutely. And I think that was also a part of listening to the podcast was that was another takeaway that we got was... And I told my husband, I said...
I I listened to the podcast. He cannot stand listening to the podcast, I will tell you.
He doesn't like me? Well, I don't like him either.
It's not that he don't like you. It's I listened to the podcast on speed 1.5, which makes everything faster.
That would make me mental. I wouldn't be good with that either.
Yeah. Yeah. And he's like, I can't stand that. He goes, I can't stand that. And I'm like, oh, well, you
know what I like your husband. I'm sorry. Take it back.
Yeah. So that's one takeaway we got from the podcast was, like, we talk... We listened to the podcast or... Shall I I did? And I think there was a few episodes there where you were telling people, we never kept our bar at 200 or 300.
Like, some people... I I know we've heard people say, my my high bar is at 200. My high bar is at 300. We never had that. But I...
The takeaway where people are... You were telling people lower it. And then, like, once you're once you're good, lower it some more. You know? And then once you're good, lower it some more.
So today, I'd have to look. We currently have Liam's high bar, which, you know, maybe we should lower it one day soon. But currently, we have him... His range is from 70 to one fifty is what we have now on our phone.
You get a beep at 01:50? Where does Liam get the beep at?
I don't know what his is at because sometimes I mess with his if... Does remote learning from home. So he does remote school. He's at home.
Mhmm.
But he has to go in person. And I think when he's in person, I do bump his up so that it's not beeping. Because when he goes in person, it's just for testing, and I don't want him, like, beeping everywhere.
Why remote learning? Does he not fit in the building?
That's it. He can't fit through the doorway?
Yeah. That's what I figured. So, like, hey. Listen. You can't send this kid here.
He keeps hitting his head on stuff.
No. He's a... He... During COVID, our our local school opened up a virtual academy. So he was in second grade, and he did remote learning second grade.
My youngest was... Started kindergarten when Liam went into third grade. So both of them did virtual kindergarten for my youngest and him for third, and then my youngest did it for first, and he did it for fourth. And then they got rid of the younger grades. And so my youngest didn't have an option to do it anymore.
So he goes in person, and my oldest still had... Or Liam still had the option, and he chose that he wanted to continue to do it at home. So he's in eighth grade now and still doing it at home.
Your opinion, pros and cons of that?
Ugh. I know what he's eating and when he's eating for the most part.
That's diabetes. I'm talking about the other stuff, the kid the kid part.
He likes it. He doesn't have the distractions of other kids. You know, the whole switching classes, walking down the hallway. He he he likes that he doesn't have to wait for a bus and get on a bus or do the car line. When he's done at the end of the day, he ends as...
He closes his computer, and he can get on his Xbox right away. Yeah.
I think son sounds like a your son sounds like a princess just like me. I love that.
I know. I know.
I don't wanna get on a bus with those other people.
He he he... He's he's not like a loner or anything. He has friends, plays soccer. We have quite a few friends, and we go and do
things with them.
So, like, he... Oh, yeah. He's social. So, like... I know grandma always worries.
She's like, he doesn't mingle. And I'm like, he mingles. He's fine.
He's fine. He knows people. Calm down.
He's fine.
Calm down, mom. Hey. Are you a are you a trophy wife, Rachel?
I wish.
No. No. No. I I... Because you said...
Because the other son, I I I couldn't figure out if your husband just had a baby early in his life or if you're the or if you're the, like, oh, I'll get another one ten years younger, which which happened.
I don't know. We'd have to ask him, I guess, what he thinks about
the trophy.
You didn't you didn't ask him?
I didn't. I never would have asked him. No.
Are you younger than him?
I am. I am. By? Eight years.
Rachel. Take take the lap. Put your hand up and wave. It's okay. Look at you.
You're a home wrecker. What'd you do? Oh my gosh. You've... I want...
I wanna ask you if there's anything that we haven't talked about here, around... Especially around Afrezza. I... I'm gonna go down and and say one more time, I have done a poor job of getting information about Afrezza for people again. And I've interviewed the CEO, Michael, who you spoke about.
I Did a Bad Job Explaining Afrezza1:11:35
And when I left that conversation, I thought I did a bad job of understanding what Afrezza is. So I'm I'm beginning to not blame myself as much as I think that it's hard for people who use it to message it because I know people who love it, who use it, and love it. Like, love it. Love it. Love it.
And when I ask them to explain it to me, I don't know what's happening, but four seconds into it, all I hear is there's an eight, a four, and a 12, and I go, uh-oh. You're not doing a good job explaining this. And so it works, and people love it. Just have trouble articulating it. And and Yeah.
I wonder if Liam would have been... Is he in the house? He must be.
You don't
wanna believe
He is in the house. He is. He's probably... He's probably about just now to get to his lunch break. Yep.
Would would... Do you think he'd jump on and answer one question about Afrezza for me?
He might be able to.
Yeah. Would you... If I paused it, would you go ask him? Yeah. Alright.
I'm gonna hit pause. Okay. Alright. I'll I'll be here when you get back.
I found him. You're back? He said, yeah. I am back. He said, sure.
Awesome. So
I'm gonna have to put the earplugs in his ears, I assume.
Yeah. No. He's gonna need
to him to look at the camera and talk to the camera. Right?
Yeah. Just have him kinda orient himself in front of your microphone. That's all.
Okay.
I I mean, I could also explain it to him. So
Okay. Okay. Here. Put these on and then sit down in that seat. You might wanna get close.
And this is, like, where the mic is. So if you say something.
Hello?
Liam, holy Christ, man. Your voice is deeper than mine. What's up, Liam?
Nothing much. What's up with you?
Not too much. I appreciate you jumping on doors. I now feel like you're older than I am. Your mom told me you're, like, nine feet tall. That's pretty awesome.
I wish I was taller. I wanna ask... I don't wanna give you any context. I'll give you the context after. Okay?
Okay.
You use Afrezza. You don't inject fast acting insulin. You're not wearing a pump. That's correct?
Absolutely. Yeah.
Okay. Take me through your day. You wake up in the morning. Do you do your slow acting in the morning or at night?
Liam's Morning, Unit by Unit1:13:48
So I do my slow acting at night. I, usually wake up around 06:45, go downstairs, and pre bolus with twenty four to twenty eight units depending on how high my number is and eat breakfast.
Okay. So, Liam, tell me something. Is that, like, two twelves cartridges?
Yeah. Two twelve cartridges. And if it's 28, then I'll add a four.
Okay. And that's because you're you're eating, like, waffles and stuff like that. Right?
Yeah.
Okay. Alright. So you you... Do you say huff or inhale? You inhale them.
How much longer until you start eating?
It's usually not too long. It's usually five to ten minutes beforehand or sometimes a little more if I'm higher.
Okay. And your mom describes that you eat a lot of the same things. So what's your go to breakfast?
Usually, it's two pieces of bacon with, two, like, small sized waffles.
Regular syrup or sugar free syrup?
Sugar free. Yeah.
K. You put some butter on it? No. No. But waffles, bacon, sugar free syrup.
What's the highest your blood sugar gets after breakfast? If
if we hit it wrong and I'm high, then at most, like, maybe one eighty.
And if it doesn't get high, do you get low later?
Sometimes, but that's only if we do a bit too much.
What's low mean? What's the number?
Low is usually for me, like, 50 to 60.
Okay. Do you know how many carbs the waffles are by any chance?
I'm... Do you have any idea, mom? Do you have do you have much She
can't hear me.
Okay. Do you have a
Just say how many carbs of the waffles.
Oh, yeah. I think it's 10 each, maybe.
Okay. So it's 20 carbs of waffles, two pieces of bacon, the 24. What do you weigh? Do you know?
I weigh around one sixty to one fifty.
One sixty, one... Do you think of yourself as lean, thin, muscular?
Very thin.
Thin. Okay. Tall and thin. Like, you popped up and haven't filled out yet?
Yeah.
Are you going to? Did you look at your dad and think, oh, I'm gonna be thin or I'm gonna fill out?
I'm hoping not to get too big, but not to be too small.
You think you think there'll be more... A little more muscle and a little more. Okay. Okay. So let's pretend that later in the morning, we didn't quite hit it right.
An Hour Past Waffle Time1:16:29
Your blood sugar is one eighty. It's now an hour past waffle time. Is that the time you think to knock it down?
Usually, I'll try and knock it down a bit earlier, but at the latest, then... Yeah.
So what do you do? Throw on another four?
If I've had nothing else, then, yeah, four. But if I've had something smaller than an eight
Okay. And... But even an hour after your initial pre bolus for breakfast, there's no concern that you're gonna get low after that. If you're one eighty, that's not gonna keep trailing away. It'll either stay at one eighty or go up, or am I not right about that?
Sorry. Can you repeat?
Yeah. Sure. So you have the waffles. Your blood sugar goes to one eighty. It's an hour after you've eaten.
You're not gonna get low. Are you gonna go up, or is it gonna just sit at one eighty if you don't do anything?
I'll probably sit at one eighty, but I prefer I prefer not to.
Okay. So you throw in a four or if you've had another snack in the morning, maybe an eight. Where do you come down to? Where does it sit after you've made the correction?
We usually tend to sit at around 80 to one twenty.
Okay. Do you have any ability to move a one twenty down, or would a four be too much for that?
A four is usually about right for that, where I'll go out and move a bit.
A little movement would help too. Okay. Because you also have the... What'd she say you're using? Not Tresiba.
You use... What's your slow acting called? Shoot. You shoot it every day. What's it called?
You pick it up, you hold it, you look right at it, and it says on it. Basagar. Yeah. Sorry. That's it.
Don't be sorry. I was just testing you. Most people, oddly enough, don't know the names of their insulins, which is which is... I've learned is pretty common. Okay.
So we've got everything clear. We're one twenty to 80 somewhere in there. We're riding along. I hear you take your school at home, so you're you're going to classes, etcetera. You decide to eat, which is right about now, and you're gonna throw in, what, another 24, 28 depending on what you're gonna eat?
I'm pretty sure we usually do any for... Anywhere from 24 to 32 because lunch has... Is quite a bit more carby than breakfast for me.
Okay.
But... Yeah.
Okay. And then the same thing happens. You either need a little more to bring it down or you don't, and then this runs. And then you play soccer. You don't get low when you're playing soccer?
I don't tend to. But
Make it happen. But it's not happening every day when you're running around playing soccer, I mean.
Yeah. Okay. Not every day. Do Sometimes.
Do you eat before you go to soccer?
We... I don't tend to eat too much, but I I do like to eat a little bit before soccer.
Is it enough that it needs insulin?
No. Because, that movement in playing usually tends to even it out
or Okay.
Knock me down.
Little snack. You go into the whole thing. You've done MDI in the past. You've shot insulin before. Is your preference MDI?
I Prefer Inhaled a Hundred Percent1:19:52
Is your preference inhaled? Can you tell me the the... What... However you feel about that first?
I prefer inhaled a 100%. It's so much easier and fast acting.
Okay. And your a one c is what right now? Do you know?
I think it's 6.8. We... It used to be quite a bit lower. But
What... What's stopping it from being lower?
It's mostly me. I've been eating so much. I need to quit it.
Well, I mean, you're hungry. Right? You should be eating.
Yeah.
Yeah. Or are you eating, like, crappy food, or are you eating... Like, do you... Are you getting also chicken, fish, you know, vegetables, that kind of stuff too?
I try to eat vegetables and, meats and... When I can, but sometimes I'll get cravings for, you know, chips, candy, all that stuff.
And Sure.
Sometimes I forget to dose or predose, and it's a problem.
Talk about that. Like, I had a a kid your age recently describing... Meanwhile, I I wanna say he was your age, but when I talked to him, he sounded like this. So it was a little different than talking to you right now. It's hard for me to keep in my head that you're 14.
But do you... By the way, do people treat you like you're older?
Oh, all the time. Yes.
Yeah. Is it the height or the voice? What do you think it is?
I think it's a combination of both, and I... I've been told I act more mature for my age.
I don't know what you're planning for your life, but let me just suggest a podcast because with your voice, I really think you could knock it down. But but also please get an education. I, what was my question here? So okay, so you're doing... I think I...
No Pain, Quick1:21:50
What don't I know about Afrezza that people should know about it?
I'm not sure if you do know, but it... It's tons more friendly to, younger children. It's... No pain, quick. It's just a simple quick inhale.
Yeah. And that's what you remember about being little and having injections, the painfulness of it.
Yeah. It's incredibly hard to get used to.
Yeah. Yeah. I would imagine. CGMs, fantastic? Or Yeah.
Yeah. Better than finger sticks for you.
Yeah.
Okay. Do you have a... Do you have any trouble letting other people know that you have diabetes? Because if you go to school at home... I mean, where are you seeing people mostly?
Soccer, like, things like that?
I do, soccer, obviously, and talk to teammates, opponents, all that, and I do testing. And I'm I'm not too embarrassed about diabetes. I don't love to share it, but it's not something I'm afraid to share.
Okay. Do you have any other autoimmune issues? Do you have hypothyroidism or celiac or anything?
Not that... I don't know. No. But, there is worry.
About?
Well, my mom and grandma have a thyroid issue, so we're looking out for that.
Okay. Alright. So you test for it sometimes?
Yeah.
Yeah. Do you know what your TSH is? Do they tell you that stuff, or you just kinda go with the flow?
I go with the flow. I've, I don't know what that is. Sorry.
Don't be sorry. It's just a measurement when they're checking your thyroid. College. Are you thinking of going away to college or staying in in your home state?
I plan on staying here. I've heard it's quite a bit cheaper.
I Want to Be a Doctor1:23:44
Yeah. Well, it definitely is. Any idea what you're thinking of doing or too young for that?
I want to be a doctor. I know it's very hard and, you know, time consuming, but that's what I'd like to do.
When did you start feeling that way?
I've felt this way ever since probably around seven, maybe. I've always wanted to be a doctor.
Yeah. Hey. This will sound like a pivot, but how hard is it not to knock those little kids over when you're playing soccer? Don't you feel like you could just swap them and knock them out of the way if you wanted to?
Yeah. It's definitely hard sometimes to not because I'm so much bigger and they're... It's just... They're very small
and it
looks like don't want.
Yeah. Liam, they're in the way. Right? They're just like bugs. Yeah.
They're like, move. Does it ever... Do you ever think I should go play with older people, but then they'd knock your ass around then because you... You're probably not as strong as they are.
Yeah. Yeah. It's tough. Do wanna play with older people. It helps learn and get better and just makes you faster.
Have you ever done it just to try?
I've played a few pickup games with, like, high school kids. It's fun, but it's... It gets hard.
Because they're moving faster than you?
Yeah. They're faster, quicker, and they have so much more power than I have.
Yeah. Well, a couple years from now, you'll be a high school kid, and you'll you'll probably be dominating them. Do you wanna play college soccer, or do you not think you're up to that?
I'd love to, but it's it's not really up to me. It's whether I can I can get to that level?
Yeah. You're a very level headed person. It's not up to me. I mean, not a lot a lot of times kids are like, I'm gonna do it. I'm like, I mean, you...
We'll see. But... Yeah. Yeah. But you know that already, and you wanna be a doctor.
You smart, Liam? Am I talking to a smart person?
I... I'd like to think so, but sometimes I have trouble staying on it. I can do the assignments. It's just difficult sometimes to do them, if you get what I mean.
Because there's a lot other... Because there's other things calling your name that you could be doing or because... Do you think you have ADHD?
It's feel... It's... Like, I can't connect with the assignment. I don't see why it's relevant all the time.
Oh, Liam.
I get it's important, but sometimes I can't understand why it connects with what I want to do with my life.
Liam, I think you might be what they call too smart for your own good. What do you think of that?
I really appreciate that.
Yeah. No. No. No trouble. I remember feeling the exact same way growing up.
I was like, what is this for? I don't need this. Don't like this. I I need that over there. How do I get to that?
Is that how you feel?
Yeah. All the time.
Yeah. Are you using AI?
I don't tend to a lot, but sometimes, yes. It's Or... Well, I I don't use it for assignments necessarily.
No. No. I'm not... Yeah. Yeah.
I'm I'm I'm I'm looking for people like you to just pick it up and just mess with it and and see what you can do with it. And Yeah. Yeah. Like, I... I'd like to see how it could expand your your desire to do other things.
That... That's the... Because you're being not help... I'm not I'm not... Listen.
School's important. I'm not saying school's not important. But if you're if you're pacing above where the curriculum is, then the only way you're gonna find other stuff is to be able to kinda take your ideas and and branch them out. And where are gonna do that if it's not talking to a a peer or to a teacher? You're gonna have to talk to, you know, talk to your LLM and, and say, hey.
I wonder what we could do with this. I just watched my son last night, two hours before... This is gonna sound wasteful to people, but two hours before his fantasy football fantasy draft, sit down. And by the time he was done, he was looking at, like, a a full... I mean, I don't know another way to put it.
It was it was, you know, it was a system to track, people's, stats. You know, I think he set it up so that live during the draft, every time he told it a name was taken off, it would reorder everybody and suggest people back again for different... He had a system in place in two hours. Now is that important? It's for the world?
It it is not. But what I what I liked was watching him go from, like, an idea to a working system in just a couple of hours. That's not a thing you could do without that. You know what I mean? Like...
So I'm wondering what you would do with it.
Yeah. That sounds insane. I'm not sure what I would do with it.
I'm interested in what you would do. Tell your mom I said you need $20 a month in a Claude account. Okay? I... I'd like her to make the investment right now.
I wanna see what you would do with it. Liam, if you ever wanna talk about diabetes, you come back on the podcast and talk. You're good at this. So, your mom is, lovely. You you think of her as a a decent person?
She's looking at you right now. Right? Yeah. She can't hear what I said, though. She is...
She... She's a decent mom?
Oh, yeah. She is. I love her. Yeah.
Oh, that's nice. She didn't have to say off the go, like, I feel pressure to get my food paid for. I'm just gonna say something nice right now. No. No.
She seems lovely. She told a nice story and and and shared with me about your diagnosis and everything and your path, and I hope your story will help other people. I think it will. I think you said something very impactful about about Afrezza when I asked you what was good about it. You said it doesn't hurt, and it's hard to get used to that hurt.
So I I thought that was really insightful, man. I appreciate you sharing that with me.
Thank you. I really appreciate, everything you said and what you just said.
No. No. Cool. Listen. I I think I'm taking you from lunch.
So why don't you go ahead? You can hand that back to her. I'll say goodbye, and you go do what you're gonna do. And, I I hope you have a good day.
Okay. Thank you.
Yep. I appreciate
you having me on.
No. No. Was really nice, man. Thank you for doing it.
Okay. See you.
Yep.
Okay. Take those earbuds back from you. Alright. Hello?
It would have been nice if you told me Robert Goulet was getting on. There's the... By the way, that reference reference was for the same six people that got the Marcus Welby reference.
They're both know. He sounds like a man.
Of like a man? He sounds like he's gonna he sounds like he... He's gonna pick me up and throw me across the room. He's He's
our our man child.
I'm like I'm like, Liam. He goes, hello? And I'm like, Jesus. God. Alright.
I'm gonna leave everybody with this. Years and years ago, Howard Stern sent Stuttering John Melendez out to interview Robert Goulet. Robert Goulet has an incredibly deep voice. And during the conversation, Stutter and John says to him, do you ever get sore testicles? And I don't know where that I don't know where that question comes from.
But Robert Goulet, in in maybe the deepest voice I've ever heard, goes, I never get sore testicles. It's just... I don't know what the hell. But every time I hear somebody with a deep voice, all I hear is, in my head, I never get sore testicles. So he jumped...
So your 14 year old son jumps on, and the voice in my head goes, I never get sore testicles. I'm like, wait. He's 14. I gotta talk to him like that. You put me to disadvantage is what I'm saying, Rachel.
Yeah. He's he's very mature.
Very mature. I told him he can come on and talk about... If he ever wants to come on and talk about diabetes, he should. He's really good at it. Just thoughtful, can answer the questions and everything.
Oh, for sure. He says I'm he would.
He says he loves you too. Aw. Did you hear him say that?
I wonder. I did hear him.
I tried to get him to say something bad about you. He says I love her. I was like, okay. I asked him. I said, is she a decent mom?
You know what I mean? Like, in case he had to unburden himself? No. Apparently, you're doing alright. It's a good job.
Although you have a thyroid issue.
I Got the Hashimoto1:31:46
I do. I got the Hashimoto.
How long? How old were you when you got it?
I I think I had it again, like Liam, way longer than I knew. I finally got diagnosed with that in 2019. Short... My dad passed away from the pancreatic cancer. And right after he passed away, I felt like a bus hit me.
Mhmm. And then a bus hit me again. I went to the doctor. I thought maybe it was just depression. I gained a lot of weight, and that's when we found out it was my thyroid.
Yeah. Yeah. What's his TSH? Because you're getting it tested. Right?
Yep. We got it tested. I think she tests it every year, every other year. And I can't tell you what the number is, but it was, a one point something. It was always in range.
That's good. That's good news. Yeah. I... Sometimes they get into the three, four range.
They're like, it's in range. I'm like, oh, you've got a ton of symptoms. But it sounds like he's doing well. I'm glad you're paying attention to it.
Oh, yeah. We keep a real close eye on his thyroid for sure.
How about the... Yeah. I'm sorry. How about the young one?
I wanna say, yeah, I got his thyroid tested at least once. Probably should... They're going back to the doctor in September, probably about time to get that retested for him too. Just keep an eye on him. And whenever he hurts himself or we see blood, we get out the meter and use that blood to good use.
Before we wipe that off, let's just test your blood sugar real quick. On your Yeah. Is it... Obviously, your husband has either had kids or been married before. So, any other autoimmune on his side?
No. Honestly, I... Not that we're aware of. When Liam was diagnosed, we looked back and nobody had type one diabetes. Diabetes.
And, obviously, when he was diagnosed, I didn't even know I had a thyroid issue at that time. So Yeah. But my mom has hypothyroidism. And then on my dad's side, his sister has hypothyroidism. And then I take that back on my mom's side.
Her sister has hypothyroidism. So there's three hypos up the line and then me with the Hashi. So
Yeah. Yeah. Did the weight clear up after the Synthroid?
Yeah. So at the same time, was feeling like crap and finding out I had the hypo... They said, initially, I had the hypothyroidism. I take that back. Initially, they said hypothyroidism.
I was having stomach pain. I eliminated gluten out of my diet, which was mostly eliminating beer and bread, and I lost, like, 35 pounds.
Cool. Beer and bread. You're like Yeah. I don't know how to explain this to Scott. I was drinking with one hand and eating a pretzel with the other hand.
Okay.
Yeah. Yeah.
Yeah. My dad's dad. I... You're... Am I about right?
Yeah. Yeah.
Well, that whole new TikTok thing where people go me without this and then they lay on the ground. You know? That was me. I'm like, cutting out bread and beer and, yeah, and lost the weight. And then I think I maybe, like, kinda went back to gluten a little bit, and then the stomach pain came back.
And that's when I went to a different doctor, and they tested further into the thyroid, like, the antibodies that I didn't even know you could test on the t fours, and that's when they said I had the Hashimoto's. So, like, two years later in 2021, I think, was when they finally said you have Hashimoto's.
So I love that you said the Hashimoto's. That's fantastic. Thank you.
I know. I... Well, I always say if you're gonna have a disease, at least that one kinda sounds cool.
I think you said the pancreatic cancer too. You were done in everything. I appreciate this about you. How old are you?
I am gonna be 40 in October.
Oh, no kidding.
Yep.
Look at you. You're nice and young. Good for you. Don't live your life. Anybody over there using a GLP?
Nope. Nope. Nope. GLPs. Nope.
None of those.
I'm gonna start asking. I think everybody's using them now. What do you think of that?
Yeah. Yeah. Yeah. My... I think my husband considered it, and then read, like, some of the side effects, and I don't...
I guess he decided it... He he didn't need it.
Tell him my side effects are I'm awesome. Okay? So... And see see if that changes in my... I just have my, my neighbors say the same thing.
I'm not... I'm worried about the side effects. He's like, you're not worried about the side effects of your high blood sugar and the neuropathy in your feet? I was like, I Oh, yeah. I would consider those two if I was you.
So I
think I think he read something about, like, eyes or something affecting his eyes, and he already has really bad eyes. So he's like, oh lord. I don't want anything to make my eyes any worse.
So I... Listen. I'd tell him to look a little deeper into that. Not a doctor. But if he...
It's it's fixed my life. So I would Yeah. I would... Actually, I'm gonna go downstairs and take it right now. What do think of it?
I'm gonna I'm gonna stop talking to you, go downstairs, jam that thing right into me and smile while it's happening. So That's awesome. Yeah. Yeah. No.
I'm glad for everybody who's doing well there. Okay. I've kept you too long. I really appreciate this. If Liam...
Don't pressure him, Rachel. But if he shows any inclination about it, have him reach back out. Okay?
Yeah. Maybe when this one airs and he listens to it, maybe he'll say, I want my own.
So I mean, he's gonna hear... His voice is gonna make the speakers rumble. So he got on. All I could think was, ugh. His voice is deeper than mine.
Ruins it. It really does ruin it for me. Takes away all my gusto. Anyway, thank you so much for doing this. I really do appreciate it.
Yes. Thank you so much for having us on.
Oh, of course. Hold on one second for me. To learn more and see if you might be able to get Twist from the pharmacy and try it for free, head to visit.twist.com/juicebox. That's visit.twist.com/juicebox. Or give them a call at 18774.
That's +1 (877) 489-4478, and tell them Scott sent you. TWIST requires a prescription and is indicated for people with type one diabetes six and older. Arden has been getting her diabetes supplies from US Med for years. You can as well. Usmed.com/juicebox or call (888) 721-1514.
Many thanks to US Med for sponsoring this episode and for being and for being longtime sponsors of the juice box podcast. There are links in the show notes and links at juiceboxpodcast.com to US Med, Twist, and today's other awesome sponsor, the Eversense CGM. They make, of course, the Eversense three sixty five, and that thing lasts an entire year. One insertion every year. Come on.
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#1993 You're a Bad Diabetic
You're a Bad Diabetic
A spider bite in Texas started it. Twenty-four years, an allergy to most insulins and nine years of bodybuilding later, her endo told her she was a bad diabetic.
Jump to a moment
- She was diagnosed two weeks before turning ten, after a spider bite in Texas took two months to heal — a black widow or a brown recluse, nobody ever knew. Her own line for it: instead of turning into Spider-Man and getting superpowers, she got type 1. The birthday cake they tried to make with Splenda "ended in a tragedy." Her third grade teacher, whose husband had type 1, would spot her clenching the desk and going white, set a snack down beside her and keep lecturing without breaking stride.
- She is allergic to insulin. Humalog produces severe swelling, hives, itchiness and heat; she has also reacted to NovoRapid, Novolin and Lantus. Her read, with two science degrees behind it, is that the insulin autoantibodies that show up as beta cells are destroyed may have primed the response, and repeated exposure makes it worse. She can only inject into her abdomen or glutes — thighs and arms are out entirely, not even once — which is also why she is not on a pump. Apidra and Levemir have both stopped being made in the US, and she was buying Apidra from Canada.
- The bodybuilding started as wanting a six-pack and turned into a hypothesis. She read that people with type 1 still produce trace insulin in the intestine, and made herself the study: if she built enough muscle to pull glucose out of the bloodstream and got lean enough, could she reach one day with no injections and a non-diabetic A1C? She set her own guardrails — no coming off insulin she still needed, no faking the A1C with lows, time in range intact, and no peptides or steroids, because she would not trade one medication for another.
- She met the goal. Nine or ten years took her from 129 pounds to a 180-pound peak bulk at five foot eight, while working full time and finishing degrees in biochemistry and molecular biology, then microbiology. Her daily insulin went from about sixty units to fifteen or twenty, and in her last year of competing she came off long acting entirely. When she told her endocrinologist she was struggling with lows and no longer on basal, he said she needed to take less long acting. She reminded him she wasn't on any. He said, "but you're diabetic, you need to be on long acting," and ended the conversation with: "you're a bad diabetic if you're not taking insulin." There was no DKA at any point.
- Two things she says plainly that are worth repeating. She is not telling anyone to stop their insulin and do a few curls — asked directly, her answer is "absolutely not," and she thinks what she did was specific to her and required treating herself almost robotically. And the gastroparesis she developed at 22, which took her voice completely and felt like being choked whenever she lay down, resolved after a Dexcom G4 prescription steadied her blood sugars. Her A1C had been 7.0 the whole time, which is why nobody could find it: the doctor who finally looked at the chart said her highs were being balanced by extreme lows, she was too young to be in his office, and she should get it fixed and get out.
- Bold Beginnings Series — Getting a refresh and re-releasing in the feed, in order, starting around episode 2000
- Juicebox Podcast Pro Tip Series — Management fundamentals with Jenny Smith, episodes 1000–1025
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Every word of the conversation
Welcome and Sponsors0:08
Welcome back, my friends, to the diabetes show that never ends. Remember this, 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. Keep your eye out. The bold beginning series is getting a refresh and it'll be rereleased right here in your feed coming very soon.
The podcast is gonna feature the bold beginning series in order just like we did with the pro tip series that began back on episode 1,000 and then ran in order. I'll be doing the same thing with bold beginnings. I'm trying my hardest to make it happen at episode 2,000. Take a look over there now if it's after episode 2,000. But if you're hearing this in the present tense, it's coming really soon.
I promise. Today's podcast is sponsored by US Med and Tandem Diabetes Care. What a pair. I'm a poet and didn't even know it. This episode of the podcast is sponsored by the Tandem MOBI system, which is powered by Tandem's newest algorithm, Control IQ Plus technology.
Tandem Mobi has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox. You can get your diabetes supplies from the same place that we do. And I'm talking about all your favorites Dexcom, Libre, Omnipod, Tandem, iLet, much much more. Go to usmed.com/juicebox or call (888) 721-1514.
Get your supplies the same way we do from US Med. Oh, gosh. You know what? This episode's also sponsored by Cozy Earth. Oh, this is good.
Cozyearth.com. Use the offer code juice box at checkout to save 20% off of your entire cart. That is 20% off your entire order at cozyearth.com. I'm talking about all of their clothing, all of their towels, sheets, everything they make. Everything is cozy, everything gets a discount with the offer code JuiceBox at checkout.
Everybody's voice because sometimes I click buttons and mess things up. Can you just say testing for me?
Testing. Testing.
Awesome. You're ready. I'm ready Unless you have any other questions that you'd like to ask prior to people listening to you, just take a deep breath and introduce yourself, and we'll start talking.
Alright. I'm ready whenever you
are. Go.
Meet Ionsei2:43
My name is Ionsei. I'm a type one diabetic for twenty four years now.
Ionsei, how old are you?
I'm 35.
35. So you were diagnosed at around 11?
Actually, two weeks before I turned 10, which at the time, all that meant was no birthday cake, and I was very sad.
They didn't let you have a birthday cake?
I think we tried to make, a sugar free birthday cake out of Splenda, which ended in a tragedy. But
Oh, I imagine.
Very different experience.
Do you remember much about the... That time besides the shitty cake?
A Spider Bite in Texas3:23
Yes. So prior to me going to the hospital, I, everybody likes to talk about their triggers. So mine actually was a spider bite, that took several months to heal, and the doctors were a little bit confused on how to treat me for that. They were talking about surgical Lansing at some point, but it took a very long time to heal. And then when it finally did heal itself, I started having those usual symptoms of having to drink a lot, pee a lot, tired all the time, and losing a lot of weight because, again, glucose toxicity, you don't feel like eating anything, and you're so tired and thirsty, all of the things.
Hey. Quick question. What kind of spider do you know?
I have no idea. I think it happened in my sleep.
And where do you live so I never go there?
So that was in Texas. Okay. And I like to make the joke that instead of turning into Spider Man and getting superpowers, I got type one diabetes.
Yeah. No kidding. What a bummer. Instead of crawling up walls and dating the hot girl in school, you're giving yourself insulin for your food. Wee.
Yeah. What a what a letdown. No kidding. How... What did you say it took?
How many months to recover from the spider bite?
I... If I remember correctly, I took about two months, I think. It just... It would not go down. Yeah.
What are
common spiders in the area that could have been, like like, when they guessed, what did... What were they guessing? Do you have, like, brown recluse spiders there? What do you have?
I think it was between maybe either a black widow or a brown recluse.
Oh.
But I'm not sure. I was the only one in the household that was bitten. So...
And after this happened, your family didn't set the house on fire and you didn't move?
I think they took their chances. Everything turned out well for them. So Not me. So happy for them.
No. I woulda I woulda... I'd have been 1974 for me. Would have been in that John Travolta movie where he lived in the bubble. I would have
been blame you.
I would have put up a clean room. I would have been like, this is where we stay now. Right here, I'm not getting hit by another spider. Ew. Are there snakes there and stuff?
What are you in, like, West Texas?
So I grew up in Texas. I'm actually in, Missouri now.
Oh, okay. What part of Texas did you grow up in?
Right between Dallas and Fort Worth, that DFW area.
Yeah. Yeah. Okay. Alright. What got you to Missouri?
I actually took up a research position after graduation.
Oh, we'll find out about that, I bet, at some point. So what was it like being diagnosed and growing up with type one?
Oh, that's a good question. I think a big part of me wanted to feel normal. At the time, we didn't really have access to a pump, so we were trying to do the whole... You have to eat snacks in the morning and in the evening. And so in a classroom where it's such an important thing to feel normal, every time you had to eat or every time I had to give a shot, it would just draw attention to myself that I didn't want.
And, thankfully, I had supportive teachers. I think, my third grade teacher at the time, her husband was type one. So I remember she would be teaching, and she would see me struggling to hide a low blood sugar, clenching the desk, turning white, and she would come up and just kind of gently put her hand on my back, pop a snack on my desk, and just not stop the lecture at all. Once I got to my teenage years, it was quite difficult to manage my blood sugars. And I struggled a lot with, you know, that prepuberty time Mhmm.
Weeks in the Four Hundreds7:14
Managing high blood sugars, especially. I would be in the four hundreds for weeks on end. I remember injecting, like, twenty some odd units of fast acting at a time, and my blood sugar would go from, let's say, like, four fifty down to, like, two seventeen and then start to climb back up again.
Can we can we go into that for a second? Sure. How is that possible in a modern day? Did you not understand it? Did your parents not?
Did you have poor direction? Did you... Were you ignoring it purposefully? Like, do you know what was happening?
I'm sorry. Could you clarify?
I just wanna know, like, how how do you... Like, how long ago was this?
For third grade? Some years ago.
Like, twenty maybe?
Yeah. Okay. Yeah.
And did you have a no pump, you said. Right?
No pump.
That's correct. Any CGMs?
No CGMs.
What was the testing process like? Like, how often were you testing your blood sugar?
Oh, I would say four times a day, if my parents or doctor didn't get on to me about it.
Gotcha. And what kind... Do you remember what kind of insulin you were using?
I believe it was Humalog. And what was the... Humulin, I think. One where you had to warm it up between your hands.
Okay. And and so you shot the Humulin once a day? Twice?
I think I I think it was before each meal in the beginning.
Okay. So is it possible you... Were you hold on a second. You weren't, like, regular in Miles per hour at any point, were you?
I think so. That sounds familiar.
Yeah. Oh, isn't that interesting that you don't really know? Okay. So it's possible... Let's see.
It's possible that you were shooting, like, once or twice a day of background insulin or... And then were you also shooting for meals?
Yes. And snacks.
Okay. Were you using cloudy? Did they... You're... Yeah.
Oh, you were doing all this. Okay. Okay. Okay. Now I understand.
How long did you how long did you do that before you started using a more modern insulin? Like, what did they move you to? Atlantis after that? This episode is sponsored by Tandem Diabetes Care. And today, I'm going to tell you about Tandem's newest pumping algorithm, the Tandem Mobi system with Control IQ plus technology.
Features auto bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandemdiabetes.com/juicebox. This is gonna help you to get started with Tandem's smallest pump yet that's powered by its best algorithm ever. Control IQ plus technology helps to keep blood sugars in range by predicting glucose levels thirty minutes ahead, and it adjusts insulin accordingly.
You can wear the Tandem Obie in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately, clip it discreetly to your clothing, or slip it into your pocket. Head now to my link tandemdiabetes.com/juicebox to check out your benefits and get started today. I used to hate ordering my daughter's diabetes supplies. I never had a good experience and it was frustrating, but it hasn't been that way for a while.
Actually, for a number of years now because that's how long we've been using US Med. Usmed.com/juicebox or call (888) 721-1514. US Med is the number one distributor for Freestyle Libre systems nationwide. They are the number one specialty distributor for Omnipod Dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1,000,000 people with diabetes since 1996, and they always provide ninety days worth of supplies and fast and free shipping.
US Med carries everything from insulin pumps and diabetes testing supplies to the latest CGMs. They accept Medicare nationwide and over 800 private insurers. You can find out why US Med has an a plus rating with the Better Business Bureau at usmed.com/juicebox, or once again, just call them. (888) 721-1514. Usmed.com/juicebox.
Yes. Okay. And I think, actually, because my blood sugars were so out of control, they moved me to an insulin pump, after. Okay. So it wasn't...
Oh, you went right from, like, kinda old insulin to a pump?
Yes.
With, what, Humalog in it? Yes. Okay. What age did that happen?
I wanna say maybe 14, 15.
Okay. And so the time in between diagnosis and the pump were the... Would you characterize those as the most difficult portion or no?
No. I would still say, while I was on the pump, it was difficult.
High blood sugar still?
Yes.
Why do you think?
Occlusions, and Then Allergies12:22
A couple reasons. I think a lot of them are common as well. My... I got a lot of occlusions on the pump. Mhmm.
And I also have developed allergies to several different kinds of insulin. So for example, I can no longer take Humalog.
What does a Humalog allergy look like to you?
What a Humalog Allergy Looks Like12:43
Severe swelling, hives, itchiness, heat, and yes, for that one.
Yeah. You're the worst Spider Man ever.
Well, unfortunately, I've developed, allergies to other insulins as well.
Which ones? Oh,
NovoRapid, Novalin, I think Lantus. And I think, I was taking a long acting for some time that it started to feel systemic before I finally dwindled off of it and switched to another one.
Do they... Does anybody have any reason, that they can offer you why this might be, like, progressing or happening or continuing?
So interesting enough, one of the autoantibodies that type ones develop is an insulin autoantibody. So it could be to the fillers itself instead of the insulin, or it could be an actual allergy to insulin. And that repeated exposure over time is what makes the reaction worse.
What are you using now?
Apidra and Levemir, Both Gone13:46
Right now, I am using... Let's see. I just switched from Apeedra. So...
Why'd you switch from Apeedra?
Because they no longer make it in The United States, and I needed financial access to...
Wait. Wait. That's crazy. My daughter abuses Apeedra. What do you mean?
No way.
Yeah.
I was getting it from Canada for a while. And...
We get it from Walgreens. Hold on a second.
Woah. Woah. Okay.
Who told you this?
Oh, wait. Hang on.
Go ahead. You're fine.
I'm taking Ampedra, and then I think Levemir was
Levemir is not being made anymore. Oh, thank god. You're scared that I'm living hell out
of me. No. I was concerned. I was like, wait a minute. I was concerned.
Yeah.
Let me go fill that script we have downstairs. Okay. Oh, yeah. Levemir. Actually, you know, I've had...
And I just saw her the other day. I've had somebody on, who's been fighting with, government over Levemir. And I'll tell you, I think she might make headway on it.
I really hope so.
Yeah. I'd be... Oh, tell... Can you tell me a little more about why Levemir is important to you?
I think that's a split dose. Right? So you can take one dose in the morning and one at night. And for me, I found that I need less insulin at night. I struggle a lot with lows.
And so right now when I take, my morning dose, that's when I take the long acting. But I... I'm higher in the morning. Mhmm. But I dwain off, like, as the night goes on.
And so to kind of compensate for that, I have to have some kind of fat and simple sugar just so that I stay and even keel at, like, 70 or 80.
So you like being able to take maybe half of your daily insulin in the morning for... With Levemir and then at night, maybe not taking quite as much?
I like the... I feel I have more control when I have that split dose. Yeah.
Sure. Sure. Why do you not use a pump?
I I had a lot of occlusions with the pump, and I found that, a lot of my high blood sugar events were because the insulin was not absorbing. I had to rotate a lot. Even with my short acting now, I can only give it in my, stomach. Otherwise, I start to have that allergic reaction again.
Oh, wow. That's interesting. Which pumps had you tried?
Oh, do you remember Animus pump? Are they still around? The Ping? Yes. Yes.
That's not around anymore. Have you not tried one since then?
I have not, but I've heard great things about several.
Oh, this is interesting. Tell me, you're in your thirties?
Yes.
Okay. You've never... You haven't thought to yourself, like, let me whip on one of these new pumps, throw my Pedra in there, let some algorithm run and see what happens?
So what I'm afraid of happening is another allergic reaction if I keep that insulin in the same place. That's why I have to rotate my injections
constantly. You're telling me that you couldn't inject in your thigh for breakfast and then go back there again at lunch.
Right.
No kidding. Because what happens?
Well, so I can't inject in my thighs or my arms at all, or I start to get itchy and that hive reaction and that heat and...
Yeah. Not even one time.
Right.
So you're you're limited to the the areas that work for you.
Yes.
What other allergies do you have?
I have a few antibiotic allergies, and I believe I'm also allergic to Tylenol.
Tylenol. Oh my goodness. That seems pretty benign. Okay. Alright.
Have you looked into any of those, gosh. The word is escaping me. But, like, the injectables for allergic... For allergies? Like
Those EpiPens?
No. No. No. They make, hold on a second. I know this word, and when it comes to me, I'm gonna be so pissed.
I'm gonna try to get, like, a name of one of them just to pop up here for a second so I can keep the conversation moving. Do you have Hashimoto's?
I do. Yes.
Yeah. No. I knew that. Okay. I didn't know know.
Could a Biologic Help18:10
I meant, like, you're you're coding like you do. Xolair or Xolair or Dupixent, like, there's injectables like biologics was the word I was looking for, by the way. They're for, like, you know, for, like, asthma, chronic hives, nasal polyp. Like, do you have hives ever?
When I take insulin. Yeah.
Yeah. Yeah. Yeah. So they make these injectables... I...
I've... Listen. Let's be clear before I move on. I barely graduated from high school. I have no advanced degree to speak of.
I've taken one college course in my entire life. I did get an a in it, but it was an introductory English course. I am not a doctor. I don't know what the hell I'm talking about. Have you ever talked to your doctor about an injectable to maybe tamp down the, like, the immune response you're having to all this different stuff?
That's an interesting question. I have not. So is it like an anti cytokine response or an immunosuppressant?
Think they're suppressants. Are these... I just opened a chat window case people are wondering what I was doing only because my clot is doing something. I just wanna be clear for all you AI snobs. Not in the way people mean immunosuppressant.
Allergy, asthma, injectables like Xolair, for example, are usually called called biologics or immunomodulators. They modify specific immune pathways involving an alert... Allergy information or inflammation. Could any of these help with a man made insulin allergy? Chad GPT would like you to know that it's not a doctor.
It also barely made it through high school. Possibly Xolair, but this is... Would be a specialist territory for a true insulin allergy, especially an IgE... What what do they call it, an IgE mediated allergy with hives, swelling, wheezing, or anaphylaxis symptoms. Xolair has been reported to help some people tolerate insulin.
It's not the first step. It's not a casual, let's try this medication. So you have to confirm you actually have an insulin allergy, try a different insulin formulation. Sounds like you've done that. Symptom support, have you...
Do you try antihistamines? Do you take them daily, I imagine?
No. I don't. Has that ever helped? It helps to slow down the reaction, to make it tolerable Mhmm. I guess, but it doesn't completely stop it.
Have you done desensitization therapy, like giving yourself small little bits all, like, all over?
I have not. I found what works for me is doing, giving injections in a more high fat area, like the... My abdomen or my glutes.
Mhmm. Yeah. Those are my spots too. Although, my butt is so thin now I can't even fly. It makes my butt hurt.
Sorry. That's... I just got off a plane. First thing I thought when I got off the plane was the one downside of losing weight is it's hard to sit on this plane.
Oh, I imagine.
Yeah. So you... Okay. I mean, look. I...
Again, I know nothing about anything. I make a podcast. But in 2026, apparently, that makes me something. I don't think so, but the world seems to think so. I would I would ask a doctor about this.
Yeah. That's interesting.
Should. Mean, why not... You don't have to thank me. We need something to talk about. It's okay.
I've also had a few people on the show in the past that have had insulin allergies, so if you want to listen to those episodes, I think if you just go to the website and type in insulin allergy, you'll get maybe three episodes on it. Also, have you tried inhaled? Have you tried the... God. Why can't I think of the name of it all of a sudden?
Afrezza?
Afrezza. For mankind. Come shopping with me right now on cozyearth.com. That's where I'm at. It'd be easy for me to click on the bedding and tell you about the sheets that I love.
Last time I was here talking about Cozy Earth, I told you about the blanket. I'm gonna mention the blanket one more time. It's called bubble cuddle blanket. I have one on my sofa. It's like a single...
Oh, fantastic. Makes me fall asleep every time. Keeps me very warm. That said, the Belmont pajama has just caught my eye. Is this a lady's pajama?
Is it... Oh, these are lovely. Very classic and comfortable looking. You should check those out. They come in long and short pants.
I like that. In the bath? Yeah. I mean, the towels. I love my towels.
I should get a robe. I didn't know they have bath mats. Hold on a second. Oh, no kidding. I could use a bath mat.
My mats are a little dodgy. I don't know about yours, but my towels, I use the waffle towels. Really like them. There's great lounge sets there. All kinds of colors and styles for men and for women.
Bestsellers, go to that list if you wanna see where everybody's getting. Yeah. The bamboo sheets are hard to argue with. Guys, listen. Cozyearth.com.
Use the offer code juice box at checkout to save 20% off of everything you put in your cart. Oh, like this ribbed Terry bath robe. It is nice. Am I a person who wears a robe? I'd like to be.
Wouldn't you like to be a person who wears a robe? It's... To me, it's the thing. It's it's an ultimate goal for me to be a robe person. I wish I was kidding.
Oh god. They have socks, hats, shoes, bags. I mean, hoodies. I love the hoodies. Hoodies are awesome, actually.
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What If I'm Allergic in My Lungs24:02
Yeah. I think I... Because of my history with allergies, it's one thing to have, like, a local allergy. Right? But then what happens if I become allergic to something that's in my lungs?
That's a bit more scary for me to think about.
Oh, no. I I I would have a hard time jumping over that wall too, but I I know somebody who used it to get around insulin allergy.
Oh, that's interesting.
Yeah. So let's... Listen to this episode and see if it helps you.
Thank you.
Yep. Okay. Let us move forward. So do you think you've had this allergy your whole life?
Wow. I'm wondering if some
of the high blood sugars are because of that.
Maybe. I think... So allergies usually develop with repeated exposure. And I know with type one diabetes onset, you have, a few cascade of, autoantibodies that occur when your beta cells are being destroyed by your T cells. And one of those are insulin autoantibody one and two.
So it's quite possible that T cells are primed to have that reaction when you take an exogenous insulin source, but it's difficult for me to answer if I've always had that insulin allergy because I didn't know until I was a few years into taking insulin.
Okay. I just wanna say that I looked a little longer while you were... It's possible you could still have to Afrezza if it's the insulin molecule itself that you're allergic to. So Right. Yeah.
Let's not just throw that in at lunchtime. Hey. Do you have, like, mast cell activation or anything else like that going on?
That, I'm not sure of. I don't think I've ever had any formal tests. I've sim... I've gone off of symptomology more than anything.
Yeah. Take a second and talk more about the psychological side of all this. How hard is this?
Diabetes or the... I mean,
diabetes with the the allergy.
Pick a Struggle26:05
Oh, I think I've told my body more than once to pick a struggle between type one and Hashimoto's and the insulin allergy. Mhmm. I think for me, it... Again, it just comes down to removing the emotional response and looking at it as more data, and pushing forward before I, like, completely give up looking at my options. Like you, just kinda looking at ChatGPT or looking online at the latest technology to see if there's a way around it.
Do you do you have a feeling that if you just drift too far in the wrong direction, it'll feel too overwhelming?
The,
Like, you almost have to be like, we're just doing the thing that we're supposed to do, and we don't think about it. We just do it. Because if you think about it too much, does it get overwhelming?
I think... Yes. I think I really like to feel like I'm captain of the ship, so to speak. Mhmm. And so if I completely give into that feeling...
Sometimes, of course, I have to sit with it and feel it and process it and move forward. But I think as long as there's something for me to do, finding that next place for me to move forward brings me a sort of comfort in a way.
I get that. Have you ever yelled, I'm the captain now, while you're by yourself?
I should do that next time. That's a good idea.
I don't know if that movie is getting too old for that reference to be, eligible or not. You got it. Thank you.
Yeah. I appreciate that.
Thank you very much. Good job. Job. Like, a beep pat on my head is like, good job. Way to say something somebody might understand.
That's really... I mean, it's just a lot. You know? Like, it's... And and do you feel like you're being helped by doctors, or do you feel like you're in in this on your own?
I Haven't Relied on a Practitioner27:55
Oh, I think I've taken my diabetes into my own hands a long time ago. I haven't relied on a practitioner for a very long time.
Mhmm.
And so for me, just reading the latest literature, finding out new technologies, and constantly updating my knowledge bank, is how I take control of my diabetes.
Okay. That's a... That's an excellent, excellent plan. So this is not why you wanted to come on the podcast, and I'm thinking at this point, you're starting to think, like, I didn't think this was gonna go like this at all. But but tell people why you wanted to come on and what you wanted to talk about.
Why She Came: Bodybuilding28:35
Sure. So I wanted to talk more about my bodybuilding experience, and how that helped me manage type one diabetes, glucose control, and everything. And then also transition when I was done competing, how I transitioned back and kept a similar mindset to maintain that control.
So do you start with just lifting for health and then you become, like, more interested in it and get more focused, or do you do you... Are you one of those people that stood up one day and said, I'm gonna transform myself into a bodybuilder?
That's a fair question. If I'm being perfectly honest with you, I initially just wanted a six pack because I thought that's amazing, and I'll just try for it. But then I... There was one day that I came across an article, I think, from Harvard that stated, type one still produce trace amounts of insulin in their intestine. And I have a strong scientific background.
And so I kind of made this hypothesis and made myself the center of this little study, so to speak Mhmm. Where, if I could grow my muscle mass, right, because muscle will pull that sugar from the bloodstream and store it as glycogen, and it'll help you have better control, tighter control. And I got my body fat low enough. For example, in a body building competition, you have to lose fat on top of that. Could I potentially have one day where I didn't need any injections and I could keep an a one c.
So I wanted to keep an a one c of a nondiabetic, which is in the low fives, but I had to set obvious parameters for myself. So I couldn't go off of insulin if I still needed it. So I couldn't say, like, oh, my blood sugar is 300, but I wanna do this. So... Yeah.
You're not out of your mind. You're just trying something. I got you. Go ahead. Yeah.
Yeah.
Yeah. And I had to... I couldn't have lows to get that low a one c because anything... I feel anything below six, you're risking hypoglycemia.
So
I wanted to keep that time and range as well as have that lower a one c.
Good parameters for yourself. He's like, I'm not gonna achieve this a one c through low blood sugars and tricking the a one c test, and I'm not just going off of insulin just because I want to. And Right. What happened?
Centering Carbs Around the Lift31:09
It was... It's a long process. So I started looking into how certain foods would affect blood sugars. So, in the beginning when I was first diagnosed, the only thing I was told was you just need to take insulin for carbohydrates. They didn't talk about glycemic index.
They didn't talk about how protein and fat also affect blood sugar. So there was, a lot of self teaching in that process, especially in the beginning. When you body build, you have, you have to eat a certain number of calories, and those calories are made up of macronutrients, protein, carbohydrate, and fat. So fat is important for sleep, recovery, hormones, regulation, protein, primarily, we focus on muscle building, and carbohydrates, we treat as fuel. So, at the time, I was also getting my degrees in biochemistry and, microbiology.
So I... And I was working as well in a research lab.
Okay. Smarty. Okay.
So for me, those were all important goals, and failure was not an option. I had to succeed. So it it required me to be extremely structured. I found out that if I had insulin resistance in the morning where I had higher blood sugars, maybe I needed to focus more on getting protein in the beginning of the day versus, like, before a workout, that's where I should center my carbs. And they...
What kind of carbohydrates? So, like, for me, I know lower, glycemic index is gonna stay with you longer. And when you're working out for bodybuilding, you're doing two hours plus of lifting, cardio, depending on which phase you're in, bulking, gaining muscle, or cutting, losing fat. And then before bed, you don't want your blood sugar to shoot high up, but you also don't want it to, drop too low. So for me, I worked out in the evenings and dropping low was an issue.
So that's where I learned to have a little bit of fat and maybe just, like, 10, 15 grams a carb before bed to keep me steady.
Okay. Wow. Like... And then does the lifting itself... I always hear people talk about how you have the bolus for lifting.
Is that a thing that you find to be true for you, or do you have other ways of dealing?
I think in the beginning, I did. Because bodybuilding, you're changing your body over time, and so those trends change over time. I think what happens when... With a lot of people when they start working out is that glycogen is released from their muscles and it enters their bloodstream. And so if they've also eaten on top of that, it's going to make your blood sugar shoot up.
Whereas, for me, I don't really have that effect, at least not anymore. I kind of eat more like brown rice, red rice, something that stays... Doesn't have that drastic effect. And so I don't really take insulin or have any insulin on board when I work out.
You don't take insulin or have insulin? And you like... You prefer to work out with no IUB?
Yeah.
And before you eat and bolus?
So I do eat right before I go to the gym.
Do you bolus for that food?
I don't.
No. Okay. What do you... What's your play? Like, do you...
I'm... I imagine you have a way you do it. Like, how much do you eat? What do you eat?
Throughout my day or No.
Prior to the gym.
So right now, I'm really enjoying this. I guess it's like a Fiesta shrimp salad. So it's got, you've got your spring mix and tomatoes, and it's got about 20 grams of protein in the shrimp, and then, three quarters cups of a mix of brown rice and red rice, and then a little bit of fat free cheese. And then my dressing is just Greek yogurt, salsa on top for extra protein.
Can I? I'm telling you, I had a, a shrimp po'boy in, New Orleans the other day that made me think maybe I should move closer to the ocean because, man, was that shrimp good.
That sounds good.
It was just... I don't even know how to put it. Flavorful. Like, the the flesh was crisp the way it's supposed to be. It tasted fantastic.
I I... Everything about it. I just... I was like, I I wasn't loving New Orleans, but I could have just sat there and ate shrimp for a few more days. I can tell you that much.
Really wonderful. Also, I just wanna say I had a great kubana while I was there as well, and, and it made me wanna go to Miami. So I was like
That sounds amazing. Yeah.
Yeah. Yeah. Yeah. So... Okay.
So you have a little plan. You do you do what you do, but it's not necessarily... Like, you haven't beaten a salad every... You know, this this mix every day for your whole life. You...
You're able to move around. So what is it more about? Is it more about a mix of protein and, like, is that... Like, if you had to break it down into, like, I don't know, fat protein carbs, is there a way you think about it before you lift?
Yeah. So I think before I workout, I try to center the majority of my carb for the day, because I'm gonna be lifting, I know, for two hours and maybe getting that cardio in a little bit. And so I really... It's really hard to treat low blood sugar in the gym. Mhmm.
And then I have that maybe 20 grams of protein and maybe a little bit of fat just to help it stay a little bit longer. And I feel like that kind of keeps me at an even, like, maybe one twenty, 100 before I'm at the end I'm at the end of my workout.
Two hours how many times a week?
Right now, it's three to four. When I was actually training, it was more like five.
What made you wanna come do this? Like, is it a thing you think people don't hear about enough?
I think so. Yeah. I know, when I first started my journey, there weren't a lot of fitness athlete influencers that you see today, And I just would have loved to have that kind of experience showcased before I
saw you. Look up to.
Yeah.
Yeah. How... Is there a way you do that? Do you use social media for that, or is it just... Is this your attempt to do it right now?
I have used... I'm... So I've used social media more in the past. Honestly, I need to get back on there and put myself out there more. But, yeah, that's one way that I do it.
And then also just, attending a few events like type one diabetes beyond, I think. Trying to put myself out there more for advocacy.
Right. I saw a look at you. Oh, that's lovely. So how, how big did you get at some... Like, because it sounds like to me, like, you started, tried to get a six pack, maybe got out of...
Maybe you're like, oh, let me see what else I can do. You're competing at some point. I'd like to know what competing looks like, and then... And and how how is that different, like, trying to hold on to all that mass?
Oh, okay. So that's a good question.
Is it? Awesome.
Bulking, Cutting, and the StairMaster38:08
Usually, you train... So when you add muscle, you usually train about two hours a day for five days a week, And you have more calories than you could possibly want, but it's very structured between protein, carb, and fat. So you don't just get to eat whatever. And then, that goes on for about six to eight months. And then, we usually do that around the holidays.
Right? So you can enjoy Thanksgiving and Christmas. And, when you cut down for a show, it takes another six months. So you start to cut down on carbohydrate and fat, and then finally, protein is the last to get chipped away at. You still have to lift with the same intensity despite your calories going down, and, you have to increase your cardio.
So for me, I had to do the StairMaster for about two hours after lifting two hours when I was peak...
I've never wanted anything that much in my entire life. I, listen. I watched my son play baseball in college and he wanted to play around 02:15 or 02:20 and the amount of food he had to eat to do that was insane.
It is insane.
Yeah. Like, you'd watch him eat and he didn't wanna be eating it.
Mhmm.
Yeah. Isn't that... What... So where's the drive come from for that?
I honestly just wanted to see this out. I wanted to see if I could, so to speak, have this one day of feeling normal. To be honest, I'm not sure. I'm one of those people who isn't sure if I will see a cure in my lifetime.
Mhmm.
And so the question that I started to ask myself is, what are you willing to do or give to reach this goal? And, to me, I could quit at any time. Right? The downside of this was I get a little healthier. I get a little more muscle mass.
The... If I stuck with it and I saw it to the end, I could probably see myself one day meeting my goal.
Okay. And and your goal in your mind when you started was like, I'd love to not use insulin, but you know that's not actually gonna happen. Right?
So I... There was a very, very low probability of that happen. But I wanted to see if that trace amount of insulin that was described in the research paper that I read Yeah. You just... Could actually be used.
No. I... No. I hear what you're saying. Like, it's it's it's...
You're you're looking for a panacea or something like that, but you're like, hey. I guess since we already got on the boat and sailed away, we should just keep going and see what happens. So how close did you get... Like, did you... Were you able to move your insulin needs down?
Oh, absolutely. I I met my goal. Yeah.
Okay. Well, go ahead. Tell tell that part now. Go ahead.
Drying Out for the Stage40:55
Okay. So, when you prepare for a show, there's also a dehydration process that occurs. So you cut down on salt the week of the competition, and, you're cutting down on water as well. And so on top of that, you also take a very hot Epsom salt bath with isopropyl alcohol to help finish drying you out, and you can't drink anything until you're judged. And so for the first, let's say, like, nine years that I competed, I really struggled with high blood sugars on the stage because my insulin wasn't absorbing.
I hadn't really slept the night before.
You dehydrated. Right? The whole thing. Yeah. Yeah.
Yeah. Like... But, like, really, really toned beef jerky.
Yeah. Yeah. Yeah. Yeah. Gotcha.
Well, so one thing is is when you have that high blood sugar, you start to look deflated. Right? You're not gonna look as sharp as if you're, like, tightly regulated.
Okay.
And so I... During that time, I... Some athletes, the night before, will take just a small amount of alcohol, like a shot before bed to finish that drying process while they sleep. And
I'm gonna stop you for a second. Is this what hap... Is this what I'm... Is this what I'm... When I hear the, the bros on the podcast and they're talking about, like, you know, tuning...
Like, body tuning and stuff like like, this is the... Like, have you, like, shot peptides to see what it would do? Like, how far have you gone through this?
Oh, no. So the other thing, I guess, I should explain is that I was not willing to trade one medication for another. So I didn't take any peptides. No steroid use. I wanted to be natural to see, again, if I could engage that insulin response with that lean.
Okay. I didn't mean to cut... I'm sorry to cut you off then. Okay. So you're...
It's the night before you're down to, like, I've I've already soaked in Epsom salt and isopropyl alcohol. Now I'm gonna take a shot of vodka, go to bed, and get up and do this in the morning. Like... So you've gone the whole way. You've done all of the tuning things that are without, you know, injectables and stuff like that.
And you... Did you did you that night, like, before going to bed, did you think, like, I did it? Did you feel like a sense of accomplishment? Like, you had done the thing you meant to do?
So, just to clarify, I think the first nine years, I didn't drink that alcohol shot. I took salt pills instead, and I struggled with those high blood sugars.
I see.
And then finally, I decided, you know what? I'm at the Natural Olympia. I've come so close. I'm taking trace amount of short acting insulin. I know that alcohol, excuse me, will shut off that glucagon response.
And we kinda know that when you drink alcohol, you have to have 15 to 20 grams of carb. And so I kind of took the risk, and I'm... I didn't drink a lot. I just took a shot. I went to bed, and, I actually wound up needing to eat more the day that I competed because of that.
I was able to sleep. I woke up, and my blood sugar was dropping like crazy.
How do you track all of this while you're doing it? Do you have somebody helping you? Do you keep a diary?
So I had a coach. I had a few coaches during this time. When it came to my final competition at the Natural Olympia in Vegas, it was mostly me trying to navigate everything.
Wow. Seems like a lot. So this Natural Olympia, this is a a thing that if I was into health or fitness or lifting anything, would have heard about. And is it happen all around the country, or is it in one specific place?
It does happen all around the country. For the league that I competed in, it also happens, like, internationally as well.
Okay.
And so when you actually compete, you're competing against people from all around the world, which is amazing.
And the competition is about... It's about body structure. Right? It's around cut and, like, things I don't understand. Like, what are they judging when they're judging you?
It depends on each division that you're in. So, some divisions require a specific look. So you've got that v taper, cap shoulders, maybe not so much in the lower body, whereas other divisions do emphasize that lower body structure, but not that, back and broad shoulders that you'd see.
Mhmm. Well, how how much muscle, like, in weight do you think you put on at, like, your... At your biggest? Like, what did you go... What did you start at, and what did you end at?
One Twenty Nine to One Eighty45:38
So... Well, we can talk weight. I'm not quite sure about muscle mass. Yeah.
No. I'm sure you weren't measuring it. But but, like, you know what mean? Like, yeah, weight, how much did you put on at at at your biggest?
I think peak bulk, I was around a hundred and eighty pounds, and I'm five eight.
And then at... If you weren't lifting at all, like, when... Before you started this, did you weigh... Like, were you happy with your appearance? Like, were...
Did you think you were at a natural weight for your body?
I think I was a little bit below. I was a runner before I started bodybuilding, so I was around one hundred and twenty nine pounds.
So at one twenty nine, you basically put on 50 pounds? Yeah. Wow. How long did that take?
Oh, like, I think nine years, ten years.
Nine years. Mhmm. My gosh. And then during that time, were working. You have a full time job.
You're going to school, like, that stuff.
Mhmm. Yes.
My goodness. What kept you going that whole time? Did you get, like, addicted to it at some point?
Oh, I think it's... Well, you have to love what you do. Mhmm. But there are obviously days where you don't wanna go to the gym Right. Or you wanna go out and maybe, like, have a nice time with your friends, doing what they're doing.
But I think at the end, it came down to my objective of I wanted to feel like I was normal, and I just I just wanted to see if I could do it.
Okay. Let's not tease that part along anymore. Tell me how that all went. Like like... Go ahead.
Like, with insulin needs and how low did they get, and what did you end up, like, accomplishing towards your goal?
Off Long Acting Completely47:12
Oh, sure. So when I got close to competition, I wound up taking trace amounts of short acting. My last year of competing, I went off of long acting completely. And I had an endocrinologist at the time, and just a very frustrating conversation where I... When you're cutting down for a competition, you can only eat so many calories.
So if you have hypoglycemia and you have to treat, you have to take those calories out from somewhere else. Right? Because you take yourself out of that caloric deficit, now you're not losing weight anymore. So you really needed to make sure, like, your blood sugars are on point. Yeah.
And when I came down to, I think, a few weeks of my competition, I was really struggling with low blood sugars. And I remember going in and telling him, listen. I am off of long acting completely. I'm... Feel like I'm taking trace amounts of of, short acting insulin.
And I had everything logged, so I ate the same things at the same time every day just so my body could adjust. Just trying to reduce as much variation as I could to give my system, my body enough time, to figure out what to do.
It's always fascinating.
Yeah. Yeah. Yeah. Thank you.
Yeah. I know.
You're a Bad Diabetic48:35
And he looked at me, and he was like, well, you need to take less insulin. We need to take your long acting down. And I had to remind him, I'm not on long acting right now. And he looked at me, and he said, but you're diabetic. You need to be on long acting.
And I'm like, but I'm struggling with low blood sugars right now. And I think at the end of that conversation, he said, you're a bad diabetic if you're not taking insulin.
Were you experiencing DKA or anything like that? No. No. Do you attribute all this to?
The low blood sugars?
Yeah. Just... You... Going from, like, I'm a type one. I mean, listen.
Before you started lifting, go back to nine years before. How much insulin were you using in a day?
Oh, oh my goodness. You're making me go back into the archives a little bit.
Is what you call is that what you call the back of your brain?
Maybe, sixty units a day.
Okay. And then at some point, you are taking how much?
At my peak when I needed the least amount?
Yeah. Yeah. Yeah.
So I wasn't taking any long acting... Maybe, like, twenty units a day or less. Fifteen to twenty, I think.
Wow. That's really... It's not... It's just not... And and your diet wasn't super low carb, or would you call it that?
Toward the end, it was low carb, of course, because I'm cutting for a show. But there was a point in 2020 where I got off of long acting and was taking, again, short acting only, and I was eating, I think, 200 grams of carb a day.
Okay. When when... You're not competing anymore. Is that right?
That's right.
Have you considered a GLP to see if it keeps your your needs down?
So I actually, I proposed this idea to, one of the PIs, principal investigators of a lab. Mhmm. We were going to look into this in type one diabetic dogs. And I I think it was an idea that we wanted to pursue at the time, and I also brought it to my endocrinologist. And they told me that it was only for type twos, and type ones could not use it.
I think it was kind of more cover your butt move because it hadn't been FDA approved at the time.
Yeah. They're doing studies around it now for type ones.
I know. Yeah. Yeah. Yeah.
Yeah. Because you're a real... You're you're you're... You... I mean, people joke all the time about their diabetes being a science experiment, but yours really is.
Mhmm. Yeah. Tell me again, what'd you go to college for?
So biochemistry and molecular biology is my first degree, and then microbiology is my second degree.
And and we wanna be clear to people. You're not saying stop taking your insulin and and do a couple of curls. That's not the point of this. Right?
Not Telling Anyone to Stop Insulin51:21
Oh, absolutely not. No.
Okay. Do you think that other people could achieve a lower insulin need if they put in that kind of crazy work? Or is this... Was this specific to you, do you think?
I think it was specific for me. There was a lot of things that I had to cut myself out of, if that makes sense. So, there was not really a lot of eating out, which is enjoyable to do. I think, I think I kinda treated myself almost robotically trying to get to achieve this goal, and I think people might need to take part in
Be human?
Yeah. Yeah. Exactly. Exactly. Do
you have, like... I mean, you said you were a runner before this. Did you put this kind of, like, like, focus into running?
No. No? I don't think I understood at the time what running did to blood sugars.
Okay. So what do you do now? Are... Do you lift more, like, just for health, or have you let it go completely? And how do you go from one eighty to, like, what do you weigh today?
I have no idea. I threw out my scale a while ago. How...
Do you think you... Do you think you're back to your one thirty number?
Oh, no. No. So I kind of... I still measure my blood sugar trends. I take a look at how much protein I'm getting a day, and I still treat it like a science, but not an extreme science, if that makes sense.
Wow. Yeah. I have to admit, I didn't know you were gonna say any of this when you came on. So I... I'm finding it interesting to kind of to pick through.
But you you were... You must be dying to use a GLP. The way you think about all this?
I'm interested in the effects. I'm not going to lie.
Yeah. No. I can... I... Yeah.
For sure. What what kind of, focus does it take to avoid, like, life things that you would be interested in had you not made a decision to live like this? Like, is it hard to not go to a restaurant with friends or to a bar on the weekends or or that kind of stuff?
I think the restaurant was a little bit difficult depending on where the restaurant is. Mhmm. So I remember one time we went to, my friends and I went to Nobu, and I was very strict. And I just watched everybody eat and enjoy, and I didn't partake. And that was difficult.
Were you just mad? You sit there mad?
No. No. I mean, it was my decision, so I'm not gonna take it out on somebody else who has... You know, they didn't have nothing to do with it. That's not fair.
Yeah. You have an insanely healthy attitude for a person who has to be oddly focused and crazy to get something done.
Oh, I appreciate that.
No. No. No. Were your parents, like, really great people or something? What's going on?
Why are you so clear headed?
Needing Insulin Meant Being Broken54:14
Oh, so I think, actually, how to put this? I think my parents saw me as the opposite of a healthy person, especially when I was first diagnosed. We're not actually close. So
Why? Why why do you think they saw that?
I think needing insulin to them, equated to being broken, and needing extra care. And so
Oh, you know what? I'm just looking at your photo for the first time. Do have a... Are you... Do you have a Spanish background?
No. No. What's your background?
We are a completely white European background.
Why do you look like you're not? Oh. You look very, what's the word I want? Like, I don't know, but I don't even know. You look a little zesty.
I don't know I don't know what to say
exactly. Okay. So why did their why did their upbringing make you, like, make you... Would you look broken to them or something or sick?
I think sick is more like it. I think I think perhaps maybe taking shots was embarrassing or hard for them to swallow. I think for my mother, it maybe came with a little bit of guilt, because I remember the doctors at the time told her that this disease was possibly passed down from her, and so I think that made it difficult.
Did the diabetes hurt your relationship with your parents? Decision seemed on their end, it seems like. But did... Was that part of it, or do do you think you were not gonna be particularly close to them no matter what?
I think it's probably part of it. There were other factors at play, but I remember... Yeah. They they weren't very kind in the things that they said with diabetes toward me, and that was one of the mental blocks that I had to overcome in the beginning. And I really had a hard time with mental health was thinking...
Her Mother's Voice56:14
Curing, my mother's voice is that no matter how strong you get, you'll never be strong enough to be, what normal people can do. And I
have that's shitty to other people?
I I don't know. I haven't really had much of a relationship with my parents in, like, thirteen years. Do you have brothers and sisters? I do. Yeah.
Were they treating them that way?
No. But, again, type one. Right? There's no family history. There's just kinda...
You get the lucky stick out of the draw, and congratulations.
Oh, you got you got the black sheep treatment?
I did. Yeah.
How about that? Is your mom a per... If I met people, your mom knew, do you think they'd be like, oh, she's lovely? And it's just... Oh, no kidding.
Okay. Was there drinking?
Maybe we can skip past that.
Okay. And I hear drinking in the story, but I get you. Alright. I know what's going on. I got the whole thing figured out now.
We're good. Okay. Although you are ethnic looking, and I don't know how you don't see that. Didn't people not tell you that?
I think it depends on the country that I visit, but not usually.
Really? Do you know what my daughter looks like? Mm-mm. People think she's Asian all the time.
Oh, wow.
Fascinating. Yeah. Yeah. Yeah. They'll...
They come up to her all the time, they ask her about her lineage, she's like, I'm I'm I'm... My dad's got, like, an Italian background. My mom's, like, Irish and English. And and people are always thinking she's... There's a great story.
When my daughter was in high school, they were... They... I don't know what they were doing. I don't know what they were thinking, but they they created these, like, groups of people by their background to make sure people were being well represented or something. I don't know.
It might have been a sign of the times at that point. But, they approached Arden, asked her if she was interested. She said sure. And then weeks into the process, but before the meetings had started, one of the teachers who she had known, like, her whole life, who has met me and my wife, multiple times, stopped her in the hallway one day and said, hey. We're gonna have to move you to another group when this all starts.
And Arden goes, why? And she goes, I I I I I thought you were Asian.
And Oh my goodness.
And Arden goes, you did? And she goes, I'm not. And she said, no. No. We figured that out now.
I was talking to somebody, and they said, why did you put Arden in this group? And I said, well, well, she's Asian. And Arden's like, I'm I'm not. Like, it's not that she would... Please make sure you understand my...
Like, it doesn't matter. Yeah. Yeah. It's just a very... Like, when some people look at her and just feel like that's the vibe they get from her.
That's hilarious. So much so
fact that she met you already.
Yeah. Yeah. I mean, yeah, I I mean, I I mean, my god. Like, I'm... I look as white as white people look.
You you you know what I mean? Like... And so... And my wife as well. My wife's translucent.
You could see through her. And so it's just really... It's it's fascinating to me. But I've also... The reason I brought it up earlier is because I have interviewed a lot of people actually from Texas who have some sort of a a Spanish background, and they can very frequently have, like, feelings that are more culturally based around diabetes, and that's where I thought you were leading to.
So that's why I took the... That's where I became a bad host when I'm...
Oh, no.
No. In the wrong direction and got it wrong. And I'm sorry to hear about you and your family. That that... Are you...
Do you keep up with your brothers or sisters?
My youngest brother and I kind of touch base from time to time.
Make you sad or you... Have you moved past it?
I think I've healed. There's... It's always gonna be a process, think, for me, but I'm... I think I've healed a lot.
Yeah. You went to therapy? You thought about
Not for that.
Not for that.
There's a lot of there's a lot of journaling. There's a lot of journaling involved.
You're like, believe it or not, Scott, my broken family didn't make the top five when I went to a therapist. Journaling is a great idea.
Yeah.
Really is. For so many little things. I I don't think we talk about it enough around diabetes and health. Actually, just how I felt, what I did today, how much insulin that led to, didn't lead to, etcetera. Like, you could really start to draw, like, lines between ideas when you do that.
Mhmm.
Yeah.
I agree.
Yeah. It'd be a good idea. Alright. Well, we're not done, but, like, I wanna make sure I've covered everything. Because I didn't understand what your story was gonna be when I started, I wanna make sure I gave you enough time.
So have you have you... Do you feel like you've gone through the things you came to talk about? And if not, please tell me more.
I think so. I think we did.
Did we?
Well Okay. I think we can... So unless you wanna go more into, my running background, because during that time, my early twenties, I developed gastroparesis. We can talk about that if you were open to that.
I would love to, but, I mean, I would love to. I would... Honestly, I would like if none of you were hyping any of these troubles, and we could talk about something else. But but I would love to. So how many years do you think you lived in the four hundreds?
I think it was at least two or three years.
Okay. And how soon did you see the gastroparesis?
The Summer She Lost Her Voice1:01:32
In... So it was interesting. I was, I think, 22, 23 at the time, and my voice just stopped. Like, I lost my voice completely.
You lost your voice? Mhmm. Okay. Not, like, metaphorically. Like, you couldn't talk.
Okay. I literally couldn't talk. And every time I laid down, it felt like somebody was choking me. And so I went to the doctor, and it was weird because it was during the summer, and they checked me for strep and all of that came back negative. And I wound up going through years of tests that came back negative.
They couldn't figure it out. And at the time, ADA had recommended an a one c of seven point o, which I had achieved. So they were quite puzzled about what was going on. And they did... They finally did, a stomach biopsy on me, and, of course, that came back clean.
But I remember going into the doctor's office to review those results. And the doctor took one look at my chart, and he said, oh, your time and range is all over the place. Your a one c is fine, but it's because your high highs are being balanced by extreme lows. You're too young to be in my office, get it fixed, and get out. So...
Alright. So I appreciated that approach, to be honest.
Okay. Hey. Gosh. I... Where's my question around this?
Mhmm.
Keep talking. I I jumped in too soon. I apologize.
Okay. Yeah. So I went back and, again, I'm still doing the tried and true prick and stick method. And I'm checking anywhere between 15 to 20 plus times a day. And I'm just not able to get my a one c under seven.
Mhmm. You know, you check your blood sugar. One time, it's 70. Okay. Everything's fine.
And then thirty minutes or an hour later, it would be, like, 200. And so it almost makes you neurotic going back and forth. Yeah. And at the time, the Dexcom g four was there. And I remember I found out about it, and I went to my doctor, and they actually gave me a prescription for that.
And the effect that that had on my control was just night and day. I was finally able to have more even keel to my blood sugars.
And
I got off the proton pump inhibitors, and, everything kind of sort of returned to normal state after that.
Yes. So the gastroparesis was specific to the the high and fluctuating blood sugars.
What the Swings Did to Her Nerves1:04:02
Yeah. So, it just puts so much... The the high blood sugars and low blood sugars just... It's too chaotic. Right?
It puts so much pressure on your nerves.
Yeah.
So you have, two sphincters to your stomach. One empties into the small intestine. The other one keeps acid from leaving your stomach and going up into the esophagus. Mhmm. And so my...
The top one for me was starting to fail. The nerves were starting to fail. And so the acid was coming up and tearing into my esophagus and everything, and that's why I'd lost my voice and was having a hard time breathing.
Did you end up with Barrett's? No. No. Good for you. I think I might have it.
Oh, no.
Yeah. Well, what are you gonna do? Something's gotta kill me. Oh, yeah. Live forever?
That took a turn. Yeah. Yeah. Definitely.
No. I actually am scheduled to go back and have another look, but the way they look is by, you know, sticking a camera up your ass. So I'm not in a not in a huge hurry to
go. Fun time. Yeah.
Is a thing I have on my schedule, to to do this this year. But but, nevertheless, I I I had, like, terrible, like, reflux, and I don't have it anymore. So I had what they considered to be, like, the beginnings of paying attention to the idea of Barrett's, and I'm interested to go back to see if what I did maybe, maybe help the situation. Because then it's possible that if it hasn't progressed at all, they can just go in there and kinda, like, literally, like, just pop out the cells. Yeah.
And... Yeah. So, anyway, I don't know a ton about it yet, but I'm I'm getting ready to learn more about it very soon. The time the time is now. But I did that with GLP.
Like, that's how that's how I... Like, you know, some people say they go on GLPs and they get reflux. It made mine go away.
Oh, nice.
Yeah. Especially when I lost weight and everything. So Congratulations. Thank you. I I I really appreciate that.
Okay. I I had a question. I just... Man, it really fell out of my head. It's pissing me off now.
Instead of letting go of it and moving forward, I'm, like, sitting here like an idiot, like, trying to figure out what it was, which is not the way this is gonna work. So, today, you are back to more insulin, or you lift how much? You're not lifting five days a week anymore. Right?
No. So I've since moved on after graduation. I I try to work out about three to four times a week. Again, I I still keep sort of the same meal prepping. Maybe I'm a little bit more lenient with it, but still trying to hit macronutrient balance.
Jumping in here to remind you that Juice Cruise '20 twenty '7 is going out of Orlando, going out of... Sorry. Was, like, tripping over my own words. They're out of... I'm sorry.
I was gonna... I'm trying to be quick and get you back to the rest of the show. That's not going well. Juice Cruise twenty twenty seven out of Orlando, July 2027. Go to juice box podcast dot com slash juice cruise to get started today.
Put your deposit down. Get your spots all secured so we can see you next year for juice cruise.
Which Toe Would Go First1:07:09
When I grew up, you know, they would say by the time you're 30, you're gonna lose... You're gonna have an amputation. Your eyesight is going to go. Your kidneys will fail. And so, I took dance when I was a kid, and I remember, I took ballet.
So I remember taking off my shoes in the car and scrunching my feet under the floor heater and just imagining which toe am I going to lose by the time I'm 30.
Oh my god. How old were you when you were doing that?
I think I was around 12 years old thinking about that already.
Oh my god.
So I'm really happy, like, right now none of that has actually happened.
And I... How would you characterize your health right now aside from the the the allergy to the insulin? Like, how would you talk about your health if somebody... If I said to you, how are you doing?
I think I'm healthier than most. I still think I hold this idea of trying to have my a one c and time and range close to a nondiabetic. For me, I feel the guidelines for diabetes care just fluctuate. And, the people that you don't see those complications in are more like people without diabetes. Right?
Because they have... Your body is used to functioning Sure. In that that certain range, very specific range.
Well, I think that, you know, this all started, like, you know, when ADA started talking about it a little differently, you know, and they try to... They start moving down that a one c target as technology gets better because it really is what it is. It's direction for doctors based on what the population can hopefully achieve. And, you know, at one point, right, the the target a one c was eight. At seven, I...
It might still be seven, to be perfectly honest with you. I'm not even sure anymore. But when they started talking more about time and range, right, that 70 to one eighty thing, That's more about stability. And that's... That ends up...
I mean, your story highlights that, but the stability is really important. Like, I'd much rather you be a 100... Like, blood sugar be one fifty all the time than it be two fifty and then 40. And, you know, back and forth, I don't want your blood sugar to be one fifty all the time. But, like, if if we had to pick between one...
And now as the technology gets better and these pumps are are... You know, these algorithms are coming into play and everything, Now people are talking about time and tight range, an even an even, like, smaller window where you kinda don't leave that window very often. But people are achieving that through more modern insulins, through CGMs, and then sometimes by algorithms. And because of this allergy, like, it it it strikes me that it's sad that you might not get to to try them because I think you'd really be fascinated by them.
Stem Cells, and a PhD1:09:45
Oh, yeah. I agree. Don't be too sad, though, because I know, stem cell therapy is actually becoming a thing and as well as gene therapy for a lot of diabetics. So maybe the insulin or biologic similars don't work for me, but maybe there's, like, an actual cure on the horizon where I can be normal.
You're one of those people who's gonna get islet cells stuff into their liver, aren't you?
Well, so that's what I want to do. Mhmm. I'm aspiring toward a PhD program where I can work with both gene therapy and stem cell therapy at the same time, sort of an interdisciplinary program.
Don't forget when doctor Bruce Banner experimented on himself, he turned to the Hulk. Okay? So That's true.
We didn't have diabetes.
I've never read one comic book where yourself has gone well. I just want to I just want you to be careful. Have you looked at that Eladon trial in in Chicago?
It's interesting. Yeah.
Yeah. As well as for time. You seem like the exact kind of person who would wanna do that.
Yeah. I think I think we still have a ways to go. I know their immunosuppressants aren't as harsh as Vertex currently, but I think I still wanna see those long term studies.
Well, you ain't gonna be here forever. You're gonna have to jump in at some point.
Well, sure. But what happens if those cells turn into cancer cells down the line or
something happens? Told you something's gotta kill you. What does it matter? Yeah. Yeah.
Yeah. Like... Because, because I I have... I haven't said this out loud because... And this is important to note.
I don't know what the hell I'm talking about, but I did interview the doctor who runs that... Wachowski who runs that trial in in Chicago, and they're using that tego Probart, that suppressant, and it doesn't seem to be having side effects for people. I'm... I I I I found myself wondering the whole time you're talking, if you took that, would you be able to take insulin without having a reaction to it, or does does that not affect the same thing? Or are there other things out there that might tamp down your response to the insulin?
Because if it did, then you could go on an algorithm, and then you wouldn't have to... You know you know what I mean? Like, there's... But I don't know. It seems like a lot.
It sounds like you work really hard and you're smart and you're doing all kinds of crazy stuff at work and everything. And, like, what... Like, where's the line? Right? Like like, I...
Let me ask that as a question. Right? How much is too much to... For effort? Do you know what I mean?
Like, at what point do you just say, like, this is it. This is how my life is. I'm okay with this.
I think when it starts to compromise quality of life. Right? And that's a very personal question. So if you're miserable trying to pursue a goal, if it's no longer worth it to you, I think that's when it should end. But for me, I think I still have that strong science background.
Right? I think I'm always gonna have this insatiable curiosity. So I'm not sure. Maybe when I'm on my deathbed, I'll I'll reconcile this is how my life was, and I'm really happy I lived it the way that I did.
I'm very glad we met. You're a bright, thoughtful person. I'm starting to think that your mom didn't like you because you were smarter than her. There any chance that is there any chance that might be true?
I don't know.
I be once for maybe and twice for definitely not.
Oh, no. You're gonna stir family pot again.
No. No. No. No. No.
I... Listen. I... You see this sometimes. Like, sometimes sometimes the kids just have bigger thoughts and the parents can kinda keep up with, and it's it's off putting.
Like, you don't know what to do about it, and then it turns into a, like, oh, just shut up kinda thing. I don't know. I mean, I've seen it before is all I'm saying. And you... You've not answered one question in a not...
Like, even just now when I asked about how much is too much, you said, well, that is a very personal thing.
Mhmm.
That's that's... You're not just thinking about the question I asked you. You're thinking about the question writ large over everybody, and there's Mhmm. There's a... There's an intelligence around that being the way your brain parse that.
Do you see what I'm saying?
Well, thank you.
You know this about yourself. Right? Come on. It's okay. You can say it.
Maybe I'll let myself believe it one day.
Oh, come on. Don't make me sad right before we're done.
Bruce Banner1:14:05
Don't be sad. One day, you'll be able to say you had Bruce Banner on your podcast, and that should make you very happy.
I want this lit up on the therapist list. That's all I'm saying. Okay? You deserve you deserve to believe in yourself to that level. I I really believe.
I've known you for an hour and nine minutes, but I I think that, like, as I'm talking to you. If you don't feel that way about yourself, that would be a shame.
Oh, well, thank you. I appreciate that.
You're very welcome. And I really appreciate you doing this with me. And I have to say, you're gonna be one of those people I tell, when we hang up here before we say goodbye, but we're not being recorded anymore. I'm gonna say to you, in a couple of years, if you wanna come back, and you have more to talk about, you should reach out.
So Thank you.
I love that. This was this was this was fun. I don't know that I did as good a job as you did in this one.
Oh, well, I think you asked intelligent questions. I really appreciate how you guided this story. It's very... I think it's a little nerve wracking coming on and talking about yourself, and I appreciate the way that you make, your guests feel at ease and just kinda open up and have a good time. I enjoyed this.
It's all part of the plan. Okay? I know... Let's not tell the plan to everybody. But, what I like...
What I really enjoy is that you are not a person who finds themselves being interviewed all the time, that there was no preplanning for this conversation or prep. So you came in. You were likely nervous. You had to find a a a way to, like, relax, and then I didn't know the first thing about your story. And we...
It it came out the way. It came out through my interest, through your desire. Like, it's... I think this is the best way to do it. If I was if I was in charge of making podcasts, this is how they would all work.
So... But I really do appreciate. You were really terrific at this, so thank you again.
Thank you.
Yep. Hold on one second for me. It seems that the podcast you just enjoyed was sponsored by Tandem Diabetes Care. Learn more about Tandem's newest automated insulin delivery system, Tandem Mobi with Control IQ plus technology at tandemdiabetes.com/juicebox. There are links in the show notes and links at juiceboxpodcast.com to Tandem and US Med, who also sponsored this episode of the juice box podcast.
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#1992 If Jarvis Was Real
If Jarvis Was Real
Scott and Jenny use AI live on air to teach you how to use it. A pizza talked through out loud, the Warsaw math run in real time, and eight prompts to steal.
Jump to a moment
- The pizza walkthrough is the whole lesson in one segment. Two slices of sausage pan pizza: roughly 65 carbs now, plus about 32 carbs' worth of fat and protein arriving over the next four or five hours. Low first, then a climb you can't catch. Same total insulin, wrong schedule.
- Jenny's verdict was that it covered everything she would teach — and her caveat matters just as much: no insulin ratio was ever given, and the device already on your body can do that math for you.
- The useful shape is a loop, not an answer. Describe the meal, reason it through together, go eat, watch what happens, come back and say what the line did. The postmortem is as valuable as the plan: drop in a graph and ask what happened.
- Where the line sits: interface help, log analysis, pulling one section out of a device manual, understanding a setting you were told to change but never understood. Not insulin dosing. Jenny notes the developer community cautions hard against the data-and-settings use, even as people report success with it.
- The 504 Builder at juiceboxpodcast.com/504-builder started as Scott cleaning up Arden's old plans for someone in the Facebook group. It now builds a plan by clicking, explains why each item is there, shows its sources, makes a substitute-teacher one-sheet, and writes you an argument when the school strikes something out.
- 504 Plan Builder — Build a 504 by clicking, see why each accommodation is there, and get an argument back if the school strikes one
- Episode 1943: Oliver — Fifteen years of being told his A1C was fine, then he pointed a model at his own Loop data
- Juicebox Podcast Pro Tip Series — Management fundamentals with Jenny Smith, episodes 1000–1025
- MiniMed Flex — MiniMed's smallest pump yet, the size of two stacked vials, controlled from an app
- Contour Next Gen — The meter Arden carries — second-chance sampling and a downloadable coupon at the link
Every word of the conversation
Welcome and Sponsors0:03
Friends, we're all back together for another episode of the Juice Box podcast. Hey. Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. This episode of the podcast is sponsored by MiniMed and the Kontoor NextGen 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 Kontoor 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 kontoornext.com/juicebox. Okay. Let me say this to you when you're being recorded. Do you wanna do something fun?
Let's Do Something Fun1:41
I would like to do something fun. Alright. That would be lovely.
Friday, we're gonna do something fun. Normally, we jump on here and don't know what we're doing. Today, we're gonna jump on and double, triple not know what we're doing because, normally, I have an idea, and I don't tell you about it. Today, my idea isn't even a fully formed idea, and I have literally no idea how this is going to go, but we are gonna step through it together. So my idea is that you and I...
Don't disconnect right away. Keep listening. You and I are going to use AI to teach people how to use AI to help themselves, and we're somehow gonna fold it into the things that are in the pro tips and the podcast and stuff like that. But I don't know how yet. But I'm gonna use your brain to prompt my AI to figure out what would be valuable and is accomplishable within this forty five minute period.
You don't even have to understand what I'm saying. Just answer questions when I give you questions. Okay?
Okey dokey.
If Jarvis Was Real2:45
Okey dokey.
Sounds fun.
I am starting for people who understand this a little bit. I don't know if I'm even counting myself as one of them. I'm starting a project right now in Claude using Fable. I said, let's brainstorm ways to use AI to teach people how to use AI to help themselves with type one diabetes. So it's thinking about that right now.
Now I'm asking you, what do you think that's very reason and math related? Like, let's rattle off some things about diabetes that is... If Jarvis was real... Right? You know Jarvis?
Yes. I know Jarvis. Just said that. I thought man. Alright.
Alright. Okay. If Jarvis was real and you had type one, what would you ask Jarvis in the course of a day? Now I thought right away bolusing for food. Right?
Because I know people are gonna be like, oh, it'll be wrong or just just just hang for a minute.
And if Jarvis is truly as, let's say, intelligent Mhmm. As it seems in the movies, if you've ever, you know
Right.
Heard the things that have been asked of Jarvis. I mean, god, probably everything. That's a gigantic brain dump. I know. That's a...
Like, that's all of the inner monologue that people with diabetes have. A 100% could be dumped into this to be able to say, hey. I'm eating Chick fil A such and such right now, and I need your suggestions. Now the lovely thing that AI... It would be great if it could have your information, and you wouldn't even have to tell it your information.
Right? Hey. This is what my information has. I've got this much IOB. My trend is looking like this.
This is my program that I'm using. This is the algorithm so that it understands all of the pieces as Jarvis would.
Uh-huh.
Because he's that smart.
Now you're getting it.
All... And then all you have to say is, hey. I'm eating Chick fil A these items. Please tell me what I should do with this bolus. Oh, and...
Right? I'm gonna play soccer for two hours after this.
Right.
And? So factor that in.
Good. See, Jenny. I knew your brain would start to work. Okay. So all the things that you ask yourself when you're thinking and helping people, wouldn't it be cool if they could just help some...
To ask something, and it would even point them in the right direction? And I'm not talking about, like, bolus exactly this much insulin. Like, I'm not talking about it like that. I mean, I'm at... Hey.
I'm walking into McDonald's, and I'm gonna get a number four. Okay? It's gonna have a diet soda with it. The number four is the two cheeseburger meal, blah blah blah. I don't know what to do.
Right? Like, I I I don't know what to do. I'm I'm... Every time I go to McDonald's, I mess this up. Like, that kind of stuff.
I'm not telling you I'm gonna build a tool that I'm gonna give you. I'm telling... I'm trying to think of ways to help people talk to this to get responses back because I also... Let me tell you the background behind this. I believe it will help them talk through it on their own even when they don't have something like this with them.
Right? Like, because Right. Because it's not so much that it's not so much that people don't have answers. I think oftentimes, it's more about they don't know what questions to ask.
I would agree with that. Because even as I've played with Claude Mhmm. I have to think about I have to think about all the things that are in my brain Yep. That I then want it to also consider in relation to the topic. Right?
And the more you feed it, the more detail you give it. And I know that this is a hotly contested sort of topic even for, like, carb counting using AI. But, honestly, I have truly found that if I give it as much information about a meal that I'm gonna eat as well as a picture of what it is Mhmm. And I give it some portion ideas, like this chicken curry with vegetables, for example, which I wouldn't eat, but that's just my example. It's a fist sized portion of rice and a fist sized portion of these vegetables, and the chicken looks like it's the size of the palm of my hand.
Yep. Right? Give me the macros for this. Again, is it gonna be a 100% precise as weighing, measuring, blah blah blah? No.
But at least it's giving you an idea to start with, and that's much better than the typical swag.
Right. And we... And you and I do that all the time. Jenny, can I ask you, is the cat bubbler on, and could we shuttle off if it is?
I don't think that's
not?
That's okay. Me check.
I hear a little noise behind you, and I wanna tell people while you're looking that
I will be right back.
I said I said I've told Claude that we're live building something while we're recording. I would like to make a tool that people can use when they're done. And then, it started to think more about my website. And I said, stop thinking about my website so much and think about helping people to use you and other AI. So it's working through there right now.
Was the bubbler on?
The bubbler wasn't on, but the fan in the bathroom down the hall was on.
Thank you, Jennifer. I appreciate it very much. And everyone listening appreciates it too, except for all the people who will later send a note and say, I could not hear the fan, Scott. But I could. I'm I'm not gonna listen.
I was thinking about it. Okay. Alright. So we're building now. Content first page is a lesson on how to talk to AI with type one diabetes.
It's a subject matter of building. So it's building. It's been at it for about a minute and a half. But I wanna... Before it does that, I wanna do what you just said.
Asking It to Explain Itself8:33
I like meal... I think the meal talk through is a great idea.
Okay.
Okay? So I'm gonna hope this works. Hey, Claude. We're gonna do the meal talk through. So I'm gonna record your voice while you're talking so everybody listening to the Juice Box podcast is listening to you right now.
Can you please help them to understand how they could use you to have better outcomes during their meals or at least have a better idea of what they're doing? Contournext.com/juicebox. That's the link you'll use to find out more about the Contour NextGen blood glucose meter. Once you get to that page, just head up to the top and you can click right on blood glucose monitoring. I can even do it with you right now.
You just go to meters, click on any of the meters at all. I'm gonna click on the NextGen, and you're going to get more information. It's easy to use and highly accurate. SmartLight provides a simple understanding of your blood glucose levels. And, of course, with second chance sampling technology, you can save money with fewer wasted test strips.
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Download a coupon? Oh, and receive a Contour Next... Oh, there might be a free meter on this page. You have to go check it out. Contournext.com/juicebox.
That's contournext.com/juicebox. Head over there now and get the same accurate and reliable meter that we use. If you're a parent of a child with diabetes, you know nighttime can be one of the hardest parts of the day. You go to bed wondering where their blood sugar is headed. You wake up to check numbers, wondering if everything is going to stay steady until morning.
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A Pizza, Talked Through Out Loud11:12
Happy to. Hi, everyone. So here's the thing about a meal. The hard part isn't the carb count. It's everything around it.
What time you start the insulin, what the fat and protein are going to do two hours later, whether you're walking after dinner. And most of that never gets talked through with anyone. That's where I can help. Describe your meal to me in plain language. Pizza, two slices.
I'm at 90 flat. I usually spike around an hour after. I'll ask you a couple of questions, and then we'll reason through it together. Not a number I hand you, the thinking behind the number. Then you go eat, and you watch what happens.
And next time, you tell me what happened, and we adjust. That loop is the whole game.
Let's do that right now. Use that meal that you just said and ask me the follow-up questions.
Right. Let's do it. Two slices of pizza. You're at 90 and flat. First one, what does your insulin usually do at this time of day?
Is dinner a time when you're pretty sensitive, or does it take more than you'd expect? Second, last time you had pizza, what actually happened? Did you go high fast, or was it fine for two hours and then a slow climb that wouldn't quit? And third, are you sitting down for the evening after this, or is there anything active coming?
So normally at dinnertime, I'm pretty good. My settings work pretty well, but I had a pretty hard day at work today. So I was pretty active, and I am a little worried about that. But normally, when I have pizza, I think I get... I don't know what I'm doing wrong really, but normally, I get low before the pizza seems to, like, impact me, and then I end up getting high afterwards.
Ah, okay. That pattern tells us a lot. That's the classic pizza shape, and you're not doing anything wrong exactly. It's a timing mismatch. Here's what's likely happening.
You dose for all the carbs up front, but the fat is slowing the whole meal down. So your insulin arrives on schedule and the food doesn't. That's your low. Then hours later, the fat and protein finally show up. Your insulin's mostly gone, and you climb and can't get it back.
The fix isn't more or less insulin. It's spreading it out. Less upfront, more behind it, and the active day matters. I'd lean even lighter on that front portion. What are you doing for insulin right now?
Pump or pens?
MDI.
Okay. That changes the shape of it. You can't extend a bolus, so you split it. Something like, take a smaller dose upfront for the carbs and then a second smaller injection maybe two hours later for the fat and protein. That second one is doing the job an extended bolus would do on a pump.
And given the hard day at work, I'd go conservative on both and lean on the fact that you can always add later. You can't take insulin back. Does splitting feel doable, or is a second shot a nonstarter for you?
No. I'd be willing to do that.
Great. Then that's genuinely your answer for pizza going forward.
Well, now...
So tonight...
Hold on. Before you go on, now I'm a little worried that I don't really understand how much is in the pizza. I'm at Pizza Hut right now, and it's a sausage pizza.
Ah, good catch. Let's ground it. Two slices of a Pizza Hut sausage pan pizza is roughly 60 to 70 carbs and something like 25 grams of fat and 25 of protein. If it's hand tossed rather than pan, knock the fat down a bit. That fat number is the whole story, by the way.
That's why your pizza behaves the way it does. Want me to run the Warsaw math on those numbers so you can hear roughly how the split shakes out?
Yeah. Sure. Let's do that. I don't know what the Warsaw math is, but I'd love to hear about it.
Sure. The Warsaw method is a way to account for fat and protein. Let me actually run it. Okay. 25 grams of fat times nine calories plus 25 of protein times four, that's 325 calories.
Divide by a 100, you get about three and a quarter fat protein units, and each unit gets treated roughly like 10 carbs. So your pizza isn't 65 carbs. It's 65 now plus about 32 carbs worth arriving slowly over the next four or five hours. That's your low then high in one sentence. Same total insulin, wrong schedule.
Okay. So I really do appreciate this explanation and talking through it's been helpful. But I'm at the pizza place. I need to know what to do, and I can't have all this chatter. So can you just lay it out for me really quickly?
Right. Quick version. Take about two thirds of your normal pizza dose now and go a little lighter than that because of the active day. Eat. Then set a phone alarm for two hours.
When it goes off, check your number. And if you're flat or climbing, take the rest. That's it. Go eat.
Thank you. I appreciate this.
Anytime. Go enjoy it. And let me know tomorrow what the line did.
Jenny Grades It16:52
Alright. What'd you think?
Right. I mean, that's everything that I would teach somebody.
Jenny's like, I'm looking for another job right now.
No. It is. I mean, that's that's the the gist of education is pulling the stuff apart to give you a baseline. And then the majority of what I do is I get in the nitty gritty and actually discuss the what happened and the over and over and the actual kinds of food and all of the variables. I mean, 40 plus variables that we have.
Right? Yeah. So, yeah, I mean, in general, that was broken down very well. And the fact of the matter is, in this example, there was no insulin ratio given.
Yeah. I I purposely didn't
ask. You a guideline.
Yeah. I mean, listen. You... It's up to you if you wanna ask, but, I mean, I I genuinely believe if you told it your ratios and your settings, it would would have hammered that out pretty quickly as well.
It could have, but you could also then just use the device that you have, which is the technology you wear on your body. And that can easily figure all of those things out for you.
Right. Also, as it's talking, I realized you could use it as, a postmortem. You know, you could go back... You easily could have opened up that window and said, hey. I I went out last night for pizza, and Mhmm.
Here's what ended up happening, and I have no idea why it went this way. And it and it really could kind of, like, go backwards at you. I... And on the other side, I... I've...
I asked Claude to tell me how to talk to it. It was very clear. It says, tell me the whole story. Make it think out loud. Make it ask you questions.
It's talking about itself. Make it ask you questions. Tell it what not to do. Push back. Be conversational.
It's not... You know, AI is not perfect. It doesn't know everything. So go back and forth. I just...
I think it's a great situation for if you don't have someone to talk to about
Who's Actually Using This18:49
it. Correct. Yeah. I also think it's important to consider those who might be using these AI platforms to start with.
Mhmm.
Now you've talked with Claude a lot
I do.
Already up to this point. Yep. And with that being said, Claude has gotten to know you, and the things that you've fed it are very diabetes specific, are very in-depth diabetes types of things. And so it has... It's it's got kind of its own library to work from.
Well, that's just a chat. It's not using any of my information.
And that wasn't
using connect it to anything that I have. I I do stuff like that on my own where it has access to all of our conversations. Conversations and... But it's not a thing I've made public or know how to make public or know that I should or could. But but I can do it on my side for that.
That was just Claude using... I don't even think... It only went to the Internet once. That was just general... Like, I think that's just generally, like, how it responded.
Okay. Could have asked it to dig deeper, and go online, cite sources, but I I didn't want it to get boring for people. But you could do that yourself. You could say Yeah. I don't understand the Warsaw method.
Explain it to me. Then you could say, explain it to me. I didn't understand that. That was too difficult. Like, break it down.
Give it to me in sixth grade
for it. Yeah. Yeah. Yeah. Exactly.
Like, keep moving it in that direction. I mean, in the end, when you and I do a bolus four, which we're gonna do right now, like, very quickly, all I do to get those numbers for people, and we'd say it really clearly while we're talking, is, like, throw in some food and tell it to go get us the macros for it. Mhmm. And it comes back to it. Then you do the the talk through on how to bolus for it.
But I usually, in these episodes, also let it talk it through to see where it matches. It's generally... I never really say that out loud while you and I are recording, but it agrees with you normally. So
Yeah.
Oh, or you agree with it, or I don't even know how to talk about that at this point. But keep thinking for a second. Like, what would you... Like like, now let's pretend for a minute that it's perfect. Okay?
What Jenny Wants It to Do Next21:11
And we can trust it a 100%. What else do you hope, like, in the future it does?
Oh, well, in the future, I think future, the big hope is that it can actually take a collective look at your data and give you true feedback on adjustments Yeah. Really. Right? Because right now, we have such a large amount of technology that we use. Whether you're a pump or MDI, there's a lot of information we're trying to piece together so that decisions like this particular meal
Mhmm.
Becomes something we can draw on historically in our mind, but also that we can make changes when we notice something is trending not the right way. And we haven't changed anything, but our needs have changed or a trend is new, that a system could actually truly pull that out and give you feedback as to what to adjust on an individual level. Not pulling it from the broad spectrum of, well, this is what the books say to do. No. No.
Yeah. This is my data. Look at everything that's been going on in my data and tell me what to adjust and why to adjust. And then a deeper step there even goes into... I've mentioned it many times, like female health.
Female hormones, man
Mhmm.
Are a struggle
Difficult.
To navigate around. At all stages of life, there is something different for a female going on with hormone fluctuations, and that directly impacts blood sugar. It directly impacts food intake, activity, energy levels, all those kinds of things. So a most beneficial AI would absolutely be able to pull all of those pieces together
Yeah.
And say, this is your plan. This is what you should do.
I would
And we're not there.
We're not... Yeah. Either we're not there or nobody's thinking about it that way right now, but I don't see how you couldn't just... Even just to drag a CGM graph into it and say, what do you think happened here? I...
And, like, I don't, like, I don't know what happened here. Could you ask me questions and try to figure it out? And imagine that. Imagine if you threw your graph in and you also knew the information about when insulin went in or what you ate or something like that and we're able to talk it through and go, yeah. Well, I had a banana at 10:23.
What do you think happened here? I mean, based on what it just said, I would imagine it could say
It could say something like, well, gosh. Your banana, you spiked way high. It looks like there wasn't enough insulin or enough time between the insulin and when it looks like you actually start to eat, to eat, or look. You were low. Gosh.
It looks like your insulin to carb ratio is wrong because you bolus, and it looks like the time was fine, but your blood sugar never actually rose after this banana. You just crashed.
I mean, that's gotta be a reasonable thing to ask and for it to to do a good job at. I I... It just doesn't... I can't see how that's not a possibility for somebody to do. And and by the way, I have an episode coming out in a couple of weeks.
This guy, he'd he'd, like, took the code from, like, his his his, like, a... His his AID system and, like, fed and fed it into it and was just like, hey. How does this work? And now that you know how my my system works, how can you help me answer some of these questions? I don't...
And then it helped him. I don't... Listen. He's gonna tell his own story, but he dialed his settings in Mhmm. That...
You know, on his... Doing that. And he said he's never had better, like, better results.
And that's the interesting thing because in the I've seen many people... Many being a good amount in terms of what I read in the online world, which is not very often, but it is what it is.
Yeah.
Who have commented to the positive of doing just that. While on the absolute opposite side, there are a lot within the development community that really caution
Don't do that.
Using Yeah. AI that way.
And I'm
Very heavily caution.
It's where I'm... It's... Listen. I'm not telling anybody to do anything. I'm wondering out loud.
And I've talked to those same people, and I don't disagree with them either. But, you know... So listen. It's gonna be episode nineteen forty three. Either it's out already or it's coming out.
Oliver, and the Settings He Found25:48
So to your point, Oliver, who is an engineer, spent fifteen years being told his a one c was fine. Then he pointed an AI model at his own loop data and found out what his settings had really been doing, changed his settings, and he'll tell you his story. But to your point, Oliver is an engineer and might have had a better idea of how to talk to it. And so Correct. A a person who gets in there and asks the wrong questions or leads it or something like that could end up with ink...
I mean, listen. If you don't talk to it correctly, it could tell you the wrong thing for sure.
Right. Because it's very directed by how what you ask You... The direction that that goes.
Right? You you could impact it too by by saying something that you believe that isn't true, and it's going to accept what you said is true. May... And I don't know. Maybe you could push back on it and get it to, like, figure out you're wrong, but I don't know how many people would have the wherewithal to do that either.
So this isn't me telling you, like, you know, it's all just perfect and go... Just go ask the thing. Because if you just ask the thing, you're very likely gonna get the wrong answer back. But my point is is that can someone not harness it in a way where it would be impossible for you to get that kind of an answer back. I'm imagining more of something where it keeps asking you questions that you can't say in a way that will miss...
That it could misinterpret. And that
Sure.
Well above my pay grade. But, like, I... That's my idea there is that that's gotta be reasonable to do. Absolutely. At some point, I just think some...
One of... Companies or people online or something... Somebody's gotta, like, just go for it. And I'm sure... By the way, I guarantee there are people like Oliver who are doing it for themselves already.
You know? It's it's just an interesting idea, though. Like, I keep I keep thinking about what he said. Arden, you know, is using Trio. Trio is code you can download off the Internet.
Could I not just give it to it and say, explain how this works to me better?
Right.
Yeah. I I... There's settings on this. I don't know what they do. I know it's online somewhere, but...
Yeah.
Here's a month of the data, right, from NightScout or whatever database you're using. And now that you know the algorithm, what do you see?
Yeah. Yep.
What are your first inclinations to what you see from this database? Right?
Right. Because having the algorithm should, in theory, if I'm right about this, let the model understand how the decisions are being made, and then you could tell it what's going wrong. And maybe it could just say to you, oh, that's clearly this setting here or this time here. I don't... I...
Listen. Again, I don't know.
But Yeah.
But people are gonna be picking through this more and more, as as time moves on. There are people who I've been... Who had told me they would never look at... Use AI who I now see using it. So, like, you know, six six, twelve months from now, I don't I don't know where we'll be at that point.
Well... And I can say as somebody who looks at an awful lot of data, right, professionally, I can look at a database before I have a visit with somebody and have some idea of what we need to adjust or look at or discuss.
Mhmm.
But it really is in the discussion of that data that true adjustments can be made.
Okay.
If I... And I think that this is the the stepwise difference really between what you might get at a very... Typical endo practice that has short time frame to look, give you the gist, and then give you some suggestions, whereas longer visits are necessary. Because just as you would need to direct AI by feeding it more of your personal variables to truly assess the data the right way, when I visit with somebody, that's what I need. I can absolutely get an idea of how to look at the data.
But unless I know that person and why they eat and what their schedule is for, you know, PE classes or Zumba in the morning or whatever, I may not be able to pick out a pattern, or I might be seeing the wrong thing to adjust because I didn't know there was a variable there that wasn't marked. Mhmm. Right? So it's a really important thing to consider not only as you work with an educator or your doctor, but also as we lean more heavily towards these automated systems that can give us more more information. As we started out, you have to give it the right information.
Yeah.
You have to tell it a lot of detail in order for it to actually generate the right suggestive move.
Mhmm. Yeah. No. I don't I don't think we're there, but I think it's I think it's coming at some point. Like, I Mhmm.
Two years ago on the podcast, I was like, I can't imagine that one day one day your pump won't just have this all baked into it, you know, at some... And be making these decisions, I would imagine, fairly autonomously without you thinking about it. If someone has the wherewithal and the technology exists, etcetera, I just mean, theoretically, it's possible. So I don't know if somebody will try it or not, but I don't see that it's not... I mean, it's a lot of math.
Right? Like, think about your algorithm. Like Mhmm. That's a lot of a lot of... And not and not difficult math, by the way, from what I understand when you're talking to people.
Yeah.
Once you really look at the algorithm, the math really is not that difficult. And this is where it always goes... My comment always goes back to, if we can put a man on the moon or send one or two or three around the moon and back to Earth and they land and they're alive and functioning.
Right.
What the heck?
Yeah. Like, come on.
This is not rocket science.
Yeah.
That one. Come on.
You're Not Stopping This32:00
I I I just think I agree. So... And I... Listen. I...
This isn't really a conversation about whether or not AI is good or bad or up or down or water used or electricity or anything like that. It's
how to use it the right way.
I just think... Look. It's... My my expectation is, like, people are gonna use it. If you're on the side of, like, it's taking jobs or it's wasting water or whatever it is, I don't I don't even know how accurate any of that is.
I'm just telling you that, like, you're not stopping this. It's happening, and it'd be awesome if people used it in in ways that would help other people. And, you know, it's... I I get people's arguments when they're like, you know, please don't don't don't waste my electricity, making a picture of your rabbit holding a basketball. I I Sure.
I get you. But, also, listen. I'll... I won't get on a soapbox, but Meta, which owns Facebook and Instagram, is probably just an AI company that sells ads now. Okay?
I know people think of it as, you know, more of a a community app or somebody. It's a... It's an AI company that sells ads. And if you're on Facebook complaining to people about them using AI, I don't know how to break it to you, you are also using AI. So if you're on Instagram yelling at somebody about it, you are also using something that is really using a lot of AI.
And and don't do the disservice of going to AI and asking it all the things in the world that use AI that you're unaware of because you're gonna get a list back about 300 things long, and you're gonna go, oh, I'm using most of this stuff in my day to day life. Mhmm. So if that's happening, my point, let's do something cool with it. Like, let's do something helpful with it. That, to me, makes more sense.
A Friend Stranded at the Port33:44
Make it beneficial.
Yeah. So let's real quick check-in. You guys don't know this, but a friend of Jenny's is at a port in... We're not gonna use her name. She's at a port getting ready to get on a cruise, and she said, oh, she...
She's looking for... She got... Somehow got to the port, and she thinks TSA lost her infusion sets. Is that right?
Either that or she left them or
Somewhere.
She has she has them she has them not.
Yes. She doesn't have them.
She is on her last
So we're trying we're trying to get people to, like, literally run to the port and give her a infusion set. So so Jenny Jenny offered to help people for free, and and and the person jumped on and said, oh my god. Thank you, Jenny. Not only that, I'll I'll send a care package. So let's see if it...
What... If this actually gets to somebody, and helps her. I hope that she's getting on that ship pretty soon. I just wanted
to Yeah. Sometime in the next, what is it? Like, probably hours, I think, is when her cruise is technically supposed to leave port. So she's... Just needs some sets for her twist pump.
That's
That's it. Got everything else.
By the way, Jenny, that's Twist with two i's. That's visit.twist.com/juicebox. Yay.
Happy to support a commercial.
Yeah. Yeah. Yeah. They're an advertiser. So while you were chatting a minute ago, I downloaded the code from a DIY system Mhmm.
Feeding It a DIY System's Code35:15
Dropped it into a project, and had it, like, you know, absorb the entire thing. And I said that I asked it to write a user... I just said, write me a user manual for adjusting settings. So all I said because I I... I'll be honest.
There are settings in Arden's AID system that are set because someone else told me turn this to that. And people who are learned know how to do it, and they've been right. But I don't know what I turned, and I don't know what it is. And so I'm not... I I would just like to understand it better.
That's an actual use. So I built something. I'm in the middle of building something right on. But I... Amy, again, my friend Claude, who, by the way, they changed his voice.
He used to be more British last week. And I don't know what happened there. He jumped on, and I was like, that's not what expected him to sound like. Oh. And so, like, just so it's not for public consumption.
It it asked me, do you want it on your website? I said, no. I just wanted to use it for myself. So I... I'm interested to see how long it'll take to build it and what I'll get back.
But what I'm hoping is for me to be able to go through... And by the way, I'm sure that this system already has a user manual online. But Hopefully. But it's... I don't know.
Like, I I... And I'm not that... I don't know how to explain that. I'm not the person who would go look for it. I would just have a problem and then go, I guess it'll be okay.
And... Which I think is what most people would do. And I'm not doing this... I'm... I I may be doing it more to illustrate what what AI could probably do
for you. Do.
Yeah. And and you take this example and go apply it to other stuff in your life. Like, for example, there's, I'm sure, a user manual online for your insulin pump. Like, right, how great would it be if you just said, look. Take this manual and break it down to the things you think I really need to know.
Here's some problems I'm having. Where in this manual should I even look to get this answer? It... You know, that that kind of stuff is... It's here.
If you don't think it's here, you're probably listening to the wrong news.
I was gonna say another way to use it would be because the user or owner manuals are online for all of the approved devices. Devices. Mhmm. If you were having a particular issue, absolutely, you can just say, I use this device. Can you look in the user's manual and just tell me what the directions are for for this thing?
Like, how do I set a temp basal? I've never done it before on my tandem pump. Yeah. It'll just suck that section out and give you just that rather than you having to thumb through PDF file after file and find that section of the user manual. It'll just pull it forward for you.
Yeah. No. So... I I... Well, listen.
Build Me a Warsaw Visualizer37:59
Here... Here's a a super inter... I'm just gonna... While it's doing that, I'm gonna open up another window. Right?
Build a visualization tool to help me understand how the Warsaw method works.
I I would have it do
Go ahead.
It at eighth grade level.
Okay. Eighth grade level.
Which eighth grade now is probably, like, a senior years ago.
I don't know. Jenny, don't be don't be mean to the young generation.
Grade level. I... You could do eighth grade and then see what it does different for a fifth grade level too.
I want sliders so I can see how... I I wanna be general with it. How settings, measurements, timing, impact.
Mhmm.
Insulin. Insulin. What's that word you use when, it's a fancy word for insulin going away? Is it desecration? Oh.
When when insulin breaks down, what's that word you use all the time?
Now that you ask me, decay.
Decay. Thank you. How insulin decay and, I don't know, food impact hits. That's as plain language as I could come up with and and very... Like, almost vague just to see what you get back.
I'm assuming what we're gonna have back in five seconds is an HTML page where I can type in letters, numbers, etcetera, sliders. But I don't know what's coming, so let's wait and see what happens. Cool. Yeah. Are you using it all in your life?
I don't imagine you use it too much, but I'm wondering where you've thought to look or not look at it.
AI? Yeah. Oh, I will absolutely use it to get a... I mean, I'm pretty good at carb counting at at estimation. But if it is something truly different or whatever, I'll use it to look food up just to get a idea whether my estimation was pretty close or also do it kind of for fun just to see how close I can get to something.
Just kind of fun to do that. I also do use it. There's a professional sort of AI that I also use to put together references that have research base to it. Mhmm. When I'm putting, like, articles or something together or I'm putting a teaching tool together that I want it to have definite reference to be able to highlight kind of at the end.
I'll use I'll use an AI online professional Oh. Program.
Eight Prompts You Can Steal41:03
I... So so now everybody's heard everything we've talked about so far. I just scrolled down on something that I didn't see. Remember I told you earlier it said it gave you, like, five ways to talk to it, push back, tell the whole story, etcetera? Yep.
Yeah. I didn't scroll down. It said, here's a toolkit. Eight prompts that people can steal. Copy, paste this into any AI, fill out the orange parts with your life information.
It gave it gave a prompt for pattern detection, a meal talk through, a what just happened postmortem, the curve ball planner, sick days, time zone changes, long flights, days at theme parks, the appointment prep, how to get ready and dampen your frustrations going to the doctor, settings, change journal, the oddball food decoder, a food with no playbook. It talks through what the carbs, fat, and protein, but the each handoff builder, oh, turns your routine into a clean one pager for a school nurse or a grandparent or a babysitter. They turned it into a web page for me to put on my website when I when I wasn't looking. So, I'll have to go look harder at that. Actually, maybe we'll...
I don't know how much time you have today, but maybe we should grab one of these prompts and see. Do you have to go?
Sure. No. I've got, like, ten, fifteen minutes.
Do you? Oh my god. It just built my settings manual for the, DIY AID system. Oh my gosh. It's extensive.
It... I don't even know how to explain this to Settings before features. The order is basal insulin, carburetral, and sensitivity always diagnose patterns, what you see, what to touch about settings. The pattern, drift up overnight or between meals. No food on board.
Likely culprit. Basil's too weak in that time block. Auto sends ratio pinned at point seven or 1.2 for days. Underlying setting is wrong. Auto sends is maxed out covering for it.
I don't know if any of this is right. It's just, it goes
But what you'd have to compare it to is what the docs say for the actual
Yeah. Yeah. Yeah. Yeah. You'd have to go look and check and see and test and etcetera or talk to people about it, your doctor, whoever.
It breaks down, the core profile settings as basal carb ratio, insulin sensitivity, glucose targets, duration of insulin action, insulin curve, and peak time. Talks about all the safety limits that are built into it, explains SMB and u m... UAM. She tells you the math around how SMB is disguided. I mean, this is like...
Goes on forever. So, I mean, the Mhmm. And that's... And this is... It's at the eighth grade, and it's still really Okay.
Like,
detailed. Still pretty detailed.
Yeah. Oh, actually, no. I'm sorry. The manual, we didn't do at eighth grade. We did the...
We did... Which one did we do at eighth grade? The
I don't know. Okay.
I tell you, I got it. I got it. We're saw methods visualization tool.
Okay.
It's still working on the visualization tool. Alright. Let's do one of the prompts then while it finishes the tool. Hold on. Scottie's jumping around Okay.
So let's take the prompt that says, oddball food decoder or hand... Even the handoff builder is a nice idea. Sure. Yeah. You wanna try that?
Yeah.
Alright. I've copied the prompt. I haven't looked at it. I'm starting up a new chat. I put the prompt in.
I need a one page handoff sheet for a school nurse, grandma, sitter, let's say sitter, so I'll delete the rest, leave sitter, who will be watching my child with type one diabetes for an evening. It also gives, like, school day, so you could, like, here... Here's our routine and my own messy words, everything I can think of, devices and what the alarms mean from what a low looks like. Oh, I see what it wants you to do. What a low looks like for your kid and how to treat it, snack rules, mealtime routine.
So it wants you to talk that into it. Just blabber away about everything that you do and then turn into a calm, clean, one pager in this order. Okay. Ready? I'm gonna give this a try.
Yeah. This is what I usually do again with with people who want... I I call it a decision matrix, essentially. Yeah. A one page, if this, then that.
That's all people need to know. Very simple and easy.
Alright. Well, I haven't done this in a long ass time, thought about Arden like this. So hold on a second. Let me put the... It says devices, what alarms mean, what a low looks like for your kid, how to treat it, snack rules, mealtime routine, bedtime, who to call, what order, anything always that can that can confuse new people.
Alright.
Wow. That's a lot.
Let's find out if my microphone will work with both at the same time. I don't think it will. Right? No. Because my mic's being used for this now.
It's not gonna work for that. Okay. I'll tell you what. When I'm done recording with you, I'll do this and add it into the recording and see what it comes up with.
Cool.
Alright. That's... So that's that. And let's see. I can't believe that they just threw out all those prompts like that without asking.
I'm I'm just hoping that it's okay.
It's asking If you if you really understand that online world is... It is endless. Like, there's never an end to the information string. So this, in particular has been discussed many platforms, many places, all the questions. There are plans online that people share.
So I'm expecting that what it does is it just pulls from the most things that people put on online resources, and it's asking you to put it together.
Jenny, I... While it's... So it was asking me a question about the Warsaw, like like Mhmm. Visualizer that I didn't answer. So that's why it's taking so long.
How the 504 Builder Happened47:24
So while that's happening, because I now answered the question, let me tell you that the other... This is a week and a half ago. I was sitting here editing the podcast, and on my other computer to my right, I often do, like, q and a's in the Facebook group while working, like, because I... You know, because why would one thing be enough to do? And so I'm doing a q and a.
People are asking me all kinds of, like, silly questions, poignant questions, like, personal, like, whatever. It's a nice thing to do to to chat with people. In the middle, some person, I think a gentleman said, like, I need help with five zero four plans. And it made me think, oh, I think I have a couple of Ardens somewhere. Let me try to dig them up.
But problem being is that older, and when I used to hand Arden's five zero four points, and I handed it in on a piece of paper. Like, you know, like, I don't have documents, but I had a... I thought, oh, I do have... Maybe I have a couple of them as Word documents. I'll give them to him.
And then I thought, oh, that's, like, ugly. I said, let me just throw it into AI and clean it up. I'll turn it into a PDF form real quick and send it over. So it's a little, like, more visually appealing and maybe etcetera. And then I was like, I don't know.
Like... So I started a project, and I was like, you know, like, I wanna be able to share these five zero four plans, my daughter's five zero four plan with somebody online. Can you clean it up? And it cleaned it up, and I was like, you know, could you make it so that, like, he could type in his, like, his kid's information where it says school and, like, name and stuff like that. I swear that's where I started.
And then it was like, yeah. I did that. I said, is this up to date information anymore? My daughter's older. And then it started looking, and then it pulled in, like, the ADA and, like, all these online online things.
And I was like, screw it. Was like, can we make a five zero four builder where people could put in their own information? We could take... It could reach out to all these places. Blah blah blah.
If you go to juiceboxpodcast.com/504-builder right now, you are gonna see an insane and simple to use five zero four builder. You you just answer questions by clicking. You can read up to... I mean, there must be nine there must be nine headers with, like, nine questions underneath of it or nine ideas of what could go into the fit. If you don't like the one thing, uncheck it.
It takes it out of your five zero four plan. Check it. It puts it back in. It explains why. It shows you where it gets it.
I I mean, honestly, Jenny, like, it's insane. It makes a one sheet for a for a substitute teacher if you need it. It asks you if if they deny you something, it'll give you an email to answer back about why it's important. If they try to strike something out of the five zero four, you can go into the five zero four, click on what they struck, and it'll give you an argument to get it back... Put back in.
It's... But, you know, I promise you if I spent thirty six hours on it, maybe. And it's a it's astonishing how well it works. So that's the kind of stuff I'm saying. Like, when I see people get online and go, like, I don't know how to make a five zero four plan.
Guess what? The Internet knows, and and you just need to be able to, like, pull it all together quickly. So when people are, like, it's useless, it doesn't do it. When I hear people complain about it like that, AI specifically, I think, boy, they just don't realize what it could do. I think people are stuck in the idea of, like, you know, people asked it to make a picture last year, and it put seven thumbs on a hand.
How does it not know that a hand doesn't have seven... Right. We're well beyond that now. And I don't know where we're gonna be in six or twelve months, but I think it's gonna... I honestly believe that you're gonna get to a point very quickly where you don't even have to...
I'm already hearing coders talk about it. Some of them with glee and some of them with sadness that, like Right. The... You're not gonna sit down and write code anymore. They're already talking about their keyboards being obsolete, that it's gonna be...
That you're just gonna talk, and you're not gonna need to even put input in that way. And so if you can if you can explain your idea in plain language, I think you can get a reasonable response back.
Response.
You know? And and then from there
mean, it boils down right now, as we've said, it boils down really to feeding it the information that you really need it to consider.
Yeah. No. I mean, you can sit down and give it your history if you want. You could... I've talked about that before too.
Like, I don't... I I think people should sit down and just talk their health history out to
it. Yeah.
And then when you wake up one day and this hurts or that hurts or this is happening, it's not just thinking about that. It's thinking about everything you've told it in the past and say, look. Apply this to my health history and tell me if there's a a... What do I call and tell my doctor right now? Because I don't know what's wrong.
And maybe that's gonna help there. Maybe... Listen. I don't know. I make a podcast.
I could be completely wrong, but I'd check it out. You see, I could
be completely wrong.
I could be... Listen. It's a high likelihood that I'm completely wrong. But I'm just telling you what I'm noticing, what I'm seeing, what I'm doing in my own life, and and what people are coming on here and talking about. I mean, I had that conversation with Oliver.
He... He's a guy who's had... He's a smart guy. Diabetes a long time. He was not having outcomes he wanted.
And lo and behold, you know, he's like, I need help with my settings. Is. Yeah. That's it. So Yeah.
Or Just Hire Jenny52:50
Anyway, if you're afraid of AI, just hire Jenny instead. She'd be happy to talk you through the whole thing.
I'll be happy to help. Yeah. I will try to help.
I will. She... Listen. Jenny, at this point now, in these poll is for episodes, you toe to toe every time I ask you a question about carbs and something or how to bowl us for it or whatnot, and then we, like, check it against Claude. You're you're always you're always a 100% right.
So Yay. You're you're my AI is what I'm saying.
Aw. Well, thanks.
Stop it. Alright. I'm gonna let you go while this is finishing up, and then I'll jump back on and finish this.
Awesome.
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Order today. Minimed.com/juicebox. Having an easy to use and accurate blood glucose meter is just one click away. Contournext.com/juicebox. That's right.
Today's episode was sponsored by the Contour NextGen blood glucose meter. It's the meter my daughter uses. She has it on her right now, and you're one click away from having it too. And don't forget using juice box podcast links helps support the show. Friends, my diabetes pro tip series is about cutting through the clutter of diabetes management to give you the straightforward practical insights that truly make a difference.
This series is all about mastering the fundamentals, whether it's the basics of insulin, dosing adjustments, or everyday management strategies that will empower you to take control. I am joined by Jenny Smith, who is a diabetes educator with over thirty five years of personal experience, and we break down the complex concepts into simple actionable tips. The diabetes pro tip series runs between episode one thousand and one thousand twenty five in your podcast player, where you can listen to it at juiceboxpodcast.com by going up in the menu. If this is your first time listening to the juice box podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all. Look for the juice box podcast and follow or subscribe.
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