#1958 Body Fullness
Body Fullness
Heather has had type 1 for twenty-nine years and was in the first human trials for Dexcom. Now she teaches mindfulness to people with diabetes — and has some language for what Scott has been doing all along.
Jump to a moment
- Twenty-nine years, starting before the internet. Heather was diagnosed in March 1997 at 27, teaching fifth grade, and refused to be admitted because she had dinner plans. She was sent home on a 70/30 mix. She's now in her thirtieth year with type 1 and describes a whole era of management that Scott — whose daughter was diagnosed in 2006 — never lived through.
- She was in the first human studies for Dexcom. Around 2000, through connections in San Diego, she got early access to continuous monitoring before it existed as a product. Her framing of what came before is worth hearing: testing twelve to fourteen times a day sounds obsessive now, but it was only ever a handful of snapshots, and you were still essentially clueless about what was actually happening.
- The advice that made her furious. An internist told her she was too stressed about it, that this was forever, and that she needed to chill out and test less. Scott's response is that it's among the worst things you can say — and he offers his own: being told Arden's high A1c was fine because bad outcomes take thirty years, when she was two years old.
- She gave Scott language for something he'd already built. When he describes his new self-guided program — built from the Pro Tip series and Small Sips, deliberately free, no upsell — Heather names it immediately as an applied mindfulness program. Her definition of mindfulness is a deep listening practice: awareness of thoughts, sensations, emotions. Her term for the diabetes version is body fullness — knowing what a low actually feels like rather than only what the data says.
- She teaches this, mostly for free. Heather is a former therapist who let her license lapse and now leads guided practice sessions through a type 1 diabetes sangha — roughly five free sessions a week, community gatherings, and an option to simply show up in silence alongside other people with diabetes. There's a multi-day retreat in Monroe, New York in October. Scott notes on air that he has no financial connection to any of it.
- Diabetes Sangha — Heather's community — free guided mindfulness practices for people with type 1, plus the October retreat in Monroe, New York.
- Diabetes Pro Tip series — Episodes 1000-1025 — the foundation Scott's self-guided program is built from.
- Small Sips series — The shorter companion episodes paired with the Pro Tips in the guided program.
- Mental wellness series with Erika Forsyth — The conversations Scott references — worry as a waste of imagination, and more.
Every word of the conversation
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Hi, Scott. I'm Heather Nielsen.
Heather? I'm Scott as we've gone over. How are you?
Mhmm. I'm doing well. I'm really well today. How are you?
Awesome. Well, I told you my wife tried to get me to cancel this recording so I could scratch her legs for her. So she said, can can
you Are you gonna be able to scratch her legs after our conversation?
I'm sure I will use the time that I was planning on eating my breakfast to do something like that.
Your day is that full.
My day is always like this. Also, are people around me who seem to think I work for them. So I mean, not that I don't wanna scratch my wife's like, you're don't misunderstand. But I've already been woken up this morning by my daughter who said, can you rub my ankles before I get in the shower? I was like, sure.
So I'm ringing her. And she's, like, 22. I'm rubbing her ankles. And I and she goes, oh, this feels so good. And I said, I wouldn't know.
No one's ever rubbed my ankles in the morning before. Oh my gosh.
Must be particularly good at rubbing the lower extremities of your loved ones.
I'm, I'm very, aggressive with it. I think the people like the aggressive.
Okay.
So, anyway, why are you here? What do you what do you do? Are you do you have diabetes? Do you like, tell me a little bit about yourself.
Sure. Yeah. I do. I have type one diabetes. Diagnosed 03/07/1997 when I was 27 years old.
Diagnosed at twenty-seven, in 19973:43
So I think seven is my unlucky number. I was teaching fifth grade at the time. Mhmm. And, you know, like like all of us, you know, I have my my story. I don't know if you wanna go into that diagnosis story at all.
So you were diagnosed twenty nine years ago?
That's right. I'm in my thirtieth year.
Look at you. I, by the way, only know that because you were diagnosed a year after I was married, and my thirtieth anniversary is coming up in a couple of days.
Alright. Good job.
And I just said to my wife, how is it possible that yeah. Good job. Actually, that'd be nice. I think more people should say that to me. Probably her probably her more than me.
But, I I just got done telling her. I was like, I had this whole thing planned, and now she's recuperating from something, and we can't do it. And I'm I'm now well, listen. That's all. But now I'm left with, like, I don't have anything to give her.
Aw. Well figure something out.
Thirty years, can you just celebrate it when she's recovered?
Yeah. We'll figure it out. It's not I don't think the date's Yeah. As big of a deal. I might just clean the bedroom for her.
I think she'd find out. She might just be like, oh, this is awesome. Thank you. So wait. So you're diagnosed twenty nine years ago.
That Yeah. That's what? Yeah. Nice. You would you start with, like, Humalog and or were you regular No.
Seventy-thirty, and the old days5:02
It wasn't even then. So it was so I was 27 years old. Right? And, you know, pretty pretty healthy. So and this was really pre Internet.
So I remember having, you know, all the symptoms, blah blah blah, super significant symptoms, but just chalked it off to stress. Finally, went to the doctor, when somebody at work told me that I looked like and I really needed to, you know, get it checked out. So, diagnosed and did not I refused to go into the hospital because I had dinner plans that night, and so they sent me home with, what was the combination? See, I don't even remember. It was, like, $70.30, whatever that was.
Okay. Alright. So you were you were doing, like like, the mixed you were mixing it or no? There's so many so by the way, there's there's a lot of interesting stuff here. A, that's never a world I was involved in.
And b, I've heard people talk about it so colloquially. Right? Like, people call it so many different things. Like, oh, I
was Oh my gosh.
I would I'd use regular in Miles hour. I was using, I don't know, pig and cow. I was doing this, like,
It seems like the old days. It was the old days.
Somebody else some people talk about it as, like, cloudy and reg like, they there's all kinds of different and I was not like, so I don't really know. I just, let people talk. But I think what's more interesting is that you don't remember.
Yeah. I don't remember. Unless you're saying all these things, I'm like, oh my god. Yeah. M p maybe it was m p h, the cloudy, the regular.
Oh my god. Yeah. Yeah. So I don't really remember. I mean, it's it's hard to track on or, you know, there was it was it's not necessary.
You know? I mean, I'm I'm 56, so my brain's full of stuff so I don't really need to hold onto that in there anywhere, but it was it was something. And then I was, you know, misdiagnosed as type two even though my A1C was 19.5 and I had all the classic symptoms and I'm white and, you know, all the stuff. So and no nothing in my family. So I was really fortunate in that I was school where I was a teacher, the one of the women who was I don't even remember what she did there, but her she was married to Bob Henry who at the time was, I don't know, with this amazing endocrinologist, like head of something at the ADA, and she talked to Bob about me and she's like, I think there's something wrong with Heather's diagnosis and can you help her?
And he said he popped off and said, yeah, she needs to get an islet cell antibody test and a GAD antibody test. And I asked my doctor to do those and then sure enough it was accurately diagnosed because I was put on Resulin, which was taken off the market later, but at the time, it was the hottest new pill for type two diabetes. So, yeah, it was a like a lot of people, fewer now than, you know, back back in the days.
Oh, I don't I don't know about that, Heather. I feel like I hear somebody say they were misdiagnosed every five minutes. I mean Do
you really?
Yeah. Maybe it's just the world I live in, but Yeah. People are constantly telling me I was misdiagnosed as a type two. And sometimes and maybe not just sometimes, but often, they're LADA. So their their progression's so slow that they they can live sometimes for years believing they're type two.
Yeah. It's really something.
You know? It's really it's really, really sad. So, yeah, I mean, I've definitely because of what I've learned and now I do work in the medical field, have for quite a while, but, you know, we we've we've really been, helpful for people to get an accurate and early diagnosis because I have a very low threshold for, you know, that that thing. But, yeah. Anyway, I was I honey honeymooned for, pretty much close to a year.
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So I did did the shots for a while, whatever they were, cloudy and clear and whatever. And then, and then I was able to, very intensely a theme I've noticed, in your podcast is that we're all anxious, like you said. Yeah. And so through a lot of lifestyle and anxiety driven management, you know, super low carb eating before that was really talked about, you know, just exercising obsessively and just really trying to avoid the inevitable. And and then, yeah, after almost a year, it was it was quite clear that, it was all my efforts were not working.
And so, yeah, never forget that first shot that was like, okay. This is now the rest of my life.
Yeah. Well, was that was that I don't know if you can take yourself back that far, but was that relieving to have an actual honest answer, or did you just feel the pressure of the injections and the new diagnosis?
Great question. I mean, I think I've I think it was both. I remember being, honestly, being the most, surprised that when I asked the endocrinologist, like, what I never really asked, like, why me? It's just not really my personality. But I I was like, well, why why this?
Like, why did physiologically, why did this happen? And he said to me, we don't know and it doesn't matter. You just need to learn to live with it. And I thought that was incredibly unsatisfying. But, you know and I was like, well, I was very skeptical too.
Was like, come on. I mean, we can, like, go to the moon and transplant hearts and stuff. Like, why can't you figure this out? But, I mean, I think we are figuring that out a little bit more clearly now.
Well, now that you understand better the action around it, does it make you feel any differently? Like, was he right?
I like to I mean, I think a lot of people like to know. You know, they they like to understand it. Would I have done anything differently, you know, going back? I mean, no. Of course not.
But it yeah. I like to I like to kinda know.
Well, well, no. Listen. I first of all, I'm with you. And I also just had this conversation yesterday with somebody else about, like, you know, they asked their doctor something. Their doctor was, like, beyond dismissive.
Just like, well, that's not no. I don't know why you're worried about that. Shouldn't be worried about that. And and just like that and then walked away from her. And and the same thing for you.
Like, you listen. I think we're gonna find as we're talking, Heather, that you're a you're probably like a first class hippie. I'm I'm I'm assuming we're gonna pick through and learn. And and you think that that's because you told me about meditation. And I'm gonna tell you it's because when I asked you something earlier, you thanked me for it.
And it's it was, like, a very therapy or enlightened way to answer me.
And How do you define hippie then?
What's hippie? We'll find out. I I'm not sure. I don't have a definition for it. I just feel like we're gonna learn that, like, you know, you you're outside without your shoes on sometimes.
I feel like that's what we're gonna learn.
Oh, as much as possible, Scott. So
but, like, I forget what it was even. I don't even know if we were recording. Like, oh oh, it wasn't. We weren't recording. I said before we get started, can I just ask you a couple?
I can I fill you in with some stuff? Like, you know, and you wrote and you said, I appreciate that or thank you for that. Or it was something about the way you said it that I thought this lady's been to therapy, and and she and she's in she sees the value in us communicating. And that that's really what I got out of it. And then when you said, hey.
The doctor said this to me, and it was unsatisfying. I thought, yes. Because that did not hit the part of her that wants to be communicating. Am I right about any of this?
You're you I've noticed this in listening to your other podcast. You're incredibly insightful. Yes. Wow. And not only have I been to therapy, but I have been a therapist.
Oh, no. I could tell. You have language around it and everything. Yay. I
have so much language. I But I'm not here with that. I'm not here in that role at all, and I actually let my license lapse.
I don't do that anymore.
That's okay. No. I could tell I could tell at some point that was part of your life. So Yeah. Okay.
So you you start off as a type one about a year into it. I mean, it's been twenty eight years now. Yeah. But you're an adult at that point. Are you married?
Are you single? Are you in grad school? Like, I mean, you're teaching, but you you don't teach anymore. Right? So it sounds like you've shifted a lot over the years.
Shifted a lot. So I was in a difficult relationship which ended after the diabetes diagnosis because hippie that I am, I was like, oh, yeah. This was this was stress induced. They don't have another answer, so I gotta get out of this relationship and change my life.
So You blamed the you blamed the boy? You're like, I knew I knew you were bad for me.
Definitely not his fault. He was
a good human. He was
a good human. We were a bad we were a bad match.
So yeah. And then I do you I'm sure you're familiar with the group in San Diego, TCOID, Taking Control of Your Diabetes.
Yeah. More of that. Yep.
Yeah. Yeah. So they were, you know, they were a huge part of my, I would say, if this doesn't sound like the wrong word, like, my my success in in, engaging with my own diabetes in a pretty skillful way from early on, you know, because Steve Edelman's message was don't let your diabetes stop you from doing anything. And, he was a great example of that is still, you know, a great example of that. Thirty years later, TCID is still rocking and rolling.
And, and then I also met Bill Polonsky and had therapy from Bill Polonsky for my diabetes burnout pretty early in. And so, you know, the combination of those two and then my amazing CDE that I had, whatever they're called now, but at the time they were CDs, the nurse who, like you, like, in three minutes kinda had had me, pretty well assessed, and she gave me examples of people that she had worked with who were living really well, like, you know, a a triathlete who did so and so with type one and, like, a newscaster. Not that I was a newscaster, but I I had done triathlons. Anyways, like, she she nailed me and she gave me these really hopeful examples. So I think, you know, the trio of them really made up for the other subpar medical care that I received and and helped me to really believe that this was not a horrible thing, you know, that I could have maybe even a better life, you know.
And I think it also snapped me too, like it like it does for a lot of people, like, oh, oh, there's this mortality thing. Mhmm.
Gay, you feel the finite, nature of being alive and
Yeah. Which, I mean, both 27 year olds are not really feeling that. You know? Or, I mean, I don't know. Maybe maybe they're I was I wasn't having those conversation.
I wasn't as much of a hippie back then, Scott.
Yeah. Well, if you were teaching if you
were teaching fifth grade, you were probably just trying to stay alive, I would imagine.
I was. Oh my god. I I did love that job, though.
So, anyway, I moved to Budapest, Hungary because Steve Edelman said don't let your diabetes stop you from doing anything, and I'd always wanted to live, in Europe and or abroad somewhere abroad somewhere. And I wanted to do it in high school, but, you know, didn't really wanna leave my friends. And then we do it in college, and then my dad was like, no. I'm not gonna pay for that. And I was like, okay.
So, you know, blah blah blah. So
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So I'm 27, 28 now, have diabetes, and I'm like, I'm gonna I'm gonna do it. And so I went to a a teaching abroad fair, teach overseas fair, and, you know, applied to one of the fair, interviewed. And then the best the best job package was in a country that I'd barely ever heard of. And so I was like, alright. We're going.
Where where did you go?
Budapest, Hungary.
Oh my god. Well, do you how how is it to land somewhere with the need for medication and be I I would imagine, you know, not a native speaker and and everything else?
A year abroad, and coming home confident21:03
Definitely not. Very difficult.
Did you pick any up while you were there?
Yes. I speak a tiny bit of Hungarian. I studied I studied weekly. Yeah.
Well, that's amazing. But but are you not fearful of, like, what how do I get my insulin? How do I get my supplies? What happens if I have a problem?
I asked a lot of questions before I went over there. You know, like, how does the does the medical system work, you know, the pharmacies, you know, all of that. So I think honestly, I've I mean, I haven't really thought about that. Nobody's asking that question. Now I would honestly be probably much more fearful, but there's maybe the youth, the naivete, the newness into diabetes, the kind of like confidence like, I got this.
You know, Steve Edelman says don't let us stop you from doing anything, you know. I think so. And I think at the time there was a group that I had connected with, again, of pre maybe we had emailed then. I don't remember. This was 1998 that I moved?
1999? Don't really remember. Anyhow, I I felt confident enough that I would be able to I mean, like, people have diabetes everywhere in the world. People in Hungary have diabetes, so, you know, they have doctors, they know how to do it. But it was actually I was signed a two year contract and I did only last one year because it was a lot harder.
I mean, San Diego, California medical care, lifestyle, weather, you know, access to exercise, fresh vegetables, all that. It was I had no idea how, what it was gonna be like in Budapest, and it was really hard.
Oh, it's difficult.
I remember, you know, I did go see an endocrinologist, and it was in hospital where you go to the endocrinologist and made me really grateful for American. We have a lot of problems with our health care system, but at least, you know, you don't have broken windows and people smoking in the hallways in our hospitals. And I went there and she told me I had to, like, take all my clothes off, and I'm like, I'm here for a diabetes visit. Like, what do
you want us to take my clothes off thing? Are we gonna talk about my blood sugars? And I had to lay on a table, and they did an EKG on me. And, she told me
that I needed to lose 10 pounds.
Oh, what a lovely moment.
It was I was like, this is so weird.
Did you say, hey. Listen. Bear naked flat on a metal table is not my best angle. Like, I think you're just not assessing me correctly. Can I stand up and maybe bend a knee?
I think if I could just shift my weight onto my hip, you would feel differently about this.
Let me show you my best features. Oh my gosh. So it was it was different. You know? It was definitely different.
And, you know,
this was before, of course, CGMs and, you know, all the stuff. So I was I was able to get this test strips. And but I look back, and I'm like, wow. That was kinda crazy that I did that. But, I mean, people do much, much crazier and braver things with type one.
So Yeah. But I Yeah.
So I bet you no matter how it ended up or the experiences you had, it probably left you feeling more confident when it was over.
So much more confident.
Yeah. I would think so. And so you so you scampered right out of there. You're like,
like I did.
I'm going home.
Travel a lot when I was there, and that was ultimately my goal, which sounds whatever. Like, I I wanted to, yeah, make a living, but when you're on a teacher salary and you're single, you know, I couldn't travel couldn't really travel Europe. So I taught, and then I just traveled on the weekends and the school breaks. So I got to see a lot and had an amazing yeah. It was amazing enriching year.
Life changing.
Testing fourteen times a day25:09
Hey. During those first year let's say the first, I don't know, ten years of your of your type one because I think that's an interesting time, '97 to 2007. What what are your outcomes like? Like, are you measuring just a one c's? Are you, like, are you testing with any frequency?
Like, how does like, how do you manage day to day through that time?
Yeah. Definitely testing very frequently. So, you know, I came back to San Diego, got you know, had a different job and got established with a an internist. And, you know, he told me with his wisdom because I was testing probably, like, 12 to 14 times a day Mhmm. Which, you know, of course, now we know when we have, like, instant constant monitoring.
That's nothing. That's nothing.
No. I know. Yeah.
Nothing. It it's just a bunch of little snapshots. You're clueless of what's really going on. But it was you know, what he said to me, wisely, but I didn't accept it very well, was that he goes, you know, Heather, you're like, you're you're really too stressed out about this, and you gotta chill out. This is, like, forever.
“You need to chill out”26:15
You know, you don't you really don't need to be testing that much and just, like, chill out a little bit. I was furious.
Oh, I think that's the worst advice, by the way. I I when my daughter was diagnosed 2,006, so no, you know, no meters. I mean, just a meter. Excuse me. No CGM.
Right? Like, we had the nobody even ever offered us a pen. Like, it was always just
like Oh, wow.
Yeah. No. I literally, no one ever said, would you like an insulin pen? And so I would test her 12 I mean, your numbers right there are twelve, fourteen times a day. It was like when you get up in the morning before you eat, an hour after you eat, like, you know, after corrections, like, that kind of thing when she didn't look right, etcetera.
Yeah. Of course.
And yeah. But to your point, that's barely enough information. And then some and then someone says to you, hey. Why you, like, why you trying so hard? Like, you you don't make yourself crazy.
And I I always imagine, like, why not, like, finish that sentence? What does that mean? Like, stop testing and then just let randomness take its course on my body and my health? Like, what a weird thing to say to somebody. It's like So
especially when it's your kids, Scott. I mean, I just so I've gotta be a million times more crazy making than when it's yourself.
One of the most disturbing things anyone ever said to me when I questioned Arden's a one c back when it was like eight. And I said, you know, is this not problematic? And they said, well, no. Like, diabetes like, really, like, bad diabetes outcomes don't happen for, like, thirty years. And I was like, but she's two.
And, like yeah. I'm like I'm like, are you sitting here trying to comfort me by telling my my daughter's gonna have complications when she's 32? So don't but don't worry about it. And I was like, what do what an Yeah. I don't know.
Like, tone deaf thing to say or Yeah. You know, way to make me feel like you don't understand the thing you're here telling me about. You it's very interesting. So, anyway, I'm sorry.
Yes. Yeah. Yeah. No. No.
Sorry. I was really appreciate that because it's very oh, there I go again. It's my hippie language.
Record I record with a therapist who has had type one for, like, well over thirty years, and I think you and her would love each
other. I'm sure we would.
She's out there, by the way. Are you still in California?
No. No. I'm in Oregon.
Oh, okay. Oh, that's right. You're up north. Okay. Sorry.
Yeah. Anyway, I I don't know. I cut you off. I have no idea where you are in your story now.
I
think you were asking me what it was like between Yeah. 1997, 2006. Yeah. So yeah. So the checking checking a lot.
The first human trials for Dexcom28:58
And then because, again, because I had been living in San I I went back to San Diego, I, and I knew the people at TCOID. I was able to get in on, you know, some early uses of the technology, and I was in the first human studies for the DexCom. And that was, I don't know, probably 2000 maybe. And it was have you ever talked to anybody about that? Like, with the what it
started out like? Early studies were like, no. I'd be thrilled to hear about it. Yeah. What was it like?
It was a surgical procedure where so I have a scar still about two inches in my lower abdomen, and they inserted about
a
I think it was probably like a AA battery size device into that extra fat that the Hungarian doctor told me I had. And
so luckily, I had that to put it into.
Good thing you didn't lose that 10 pounds.
I know. So, it came in handy. So it was just hanging out there, and this was when because it was so new. Right? And the idea was initially, like, can can people can patients handle all of this information?
That was, I remember, one of the questions. Because I got interviewed, you know, quite a few times through the because this is early development. So through the process, lots of conversations about what this would be like. So I mean, and this was brand new. It had only been used in dogs.
So there were, like, 20 of us in doing these human trials. So I had to go in weekly to UCSD, and then they would upload, download, whatever, transfer the data from this device in my tummy. And then the well, I guess it would go from that device to I was carrying something around, some big clunky, like, Sony Walkman size kind of thing Mhmm. I think. And then it would they would that's where the data was held, and then they would transfer it, every Friday.
And then, you know, they would look at it and see what was going on. And then remember I went on vacation with some friends, to Puerto Vallarta, and I was wearing a black bathing suit on the beach. And I'm this is what I'm I've kinda made this story out because I came back from there, and they're like, oh my gosh. Your sensor died. We think maybe maybe it got, like, fried when you're on
your vacation or something. So,
you know, it was so expressive.
Then, okay. Then I had to
go have it, you know, removed and then that was I was done with that part of the study. But but, you know, I think the, you know, kind of to your the point one of the points of your question, I'm guessing, is, like, just to to for all of us to reflect on the amazing advances in the technology both in the insulin types, you know, because I I was before all these amazing long acting, you know, basils. Right? And there's people, you know, obviously who've had it fifty years, sixty years who can have the real the real interesting historic stories. But but just that one shift, that development of this continuous glucose monitoring has been such a game changer.
Oh, yeah.
And, you know, like they were concerned about is this going to be too much information for people, you know, the it can it can be a lot. Right? I mean, we we can we, that's where I think enter enter the mindfulness stuff. So it was around that same time or a little bit later that it's 2000 let's see. I was pregnant with Grace.
So 2002. Yeah. So it's 2002, and I've I had been told, you know, you're basically, you're too stressed out about this. You gotta chill out. And and I was working at that time.
I'd moved into into health care by this point because I oh gosh. I don't wanna go into too many rabbit holes. Lots of stories to tell. But, I was working for the Whittier Institute for Diabetes in a project called or a division called Project Dulce. And so I was doing peer diabetes education because, you know, my first career had been as a teacher, and then my graduate degree was in clinical psychology.
So I'm like, blend these things together, right, and help people. And I live with type one, so it seemed like I was made for that job. Right? Like so doing this job, stressed out, and knowing that there had to be a better way. And I saw this flyer in the hallway at the Scripps Hospital.
Says, like, MBSR, mindfulness based stress management. I was like, I don't know what that mindfulness based
stuff is, but I sure need stress management.
And so I signed up for the class, and it was the most impactful eight weeks and $300, you know, of my life to that point at that point. And I thought pretty quickly into it, everybody with diabetes needs this. Everybody needs this.
Are you an anxious person by trade, like, prior to diabetes?
Yes. I'm I was gonna say yes and no, but, I mean, if there's yes in there, then it's yes.
What so so so even before type one, you would have described yourself as however people talked about it back then?
Yeah. We didn't really talk about it back then.
No. Type a type a, uptight, that stuff, those words?
I I don't think anybody would have described me as type a or uptight. I think I'm a pretty like, I'm a peacemaker kind of I wasn't yeah. I got good grades in high school and all that stuff. Not so high performing in college, kind of a little bit more trying to figure stuff out. Yeah.
I I'm not as type I'm I'm in on the spectrum. How's that?
Put put it in find words for it though. Like, what how did you like, how would you describe yourself if not anxious? I
really cared about doing well.
You were a worrier?
I wouldn't have described myself as a worrier either. I think I just
Perfectionist?
Again, on the spectrum.
Oh, it's interesting. You yeah. You you don't have so do you not wanna put a word to it, or do you not do you really feel like there's not a word to put to how you are?
I feel like all of those words bring to mind something that I'm not quite. But, yeah, I'm
not quite. I just, for the first time, have I, for the first time, know how people feel when they're talking to me.
How's that? What do you mean?
Because, like, I'll I'll I'll I'll I'll experience something emotional and my eyes will, like, well up, and my wife will go, you're crying. And I go, I'm not crying. I'm just welling up. And she'll say, well, no. That's crying.
Finding mindfulness36:09
And I go, I don't I'm not crying. I've cried before. This isn't crying. And then then fifteen minutes later, she looks like she wants to murder me then jump off a roof. And I'm like, and I think I'm starting to have that feeling asking you about your anxiety.
You wanna jump off the roof. I'm sorry. Let's just
say a word, Heather. Which is it?
Well, I'll tell you okay. Late later, much later in this story, I this is this is definitely okay. I remember a moment when I was like, wow, I actually have been really anxious. It was when I was discovering functional medicine and, went to this chiropractor and she gave me this, like, powder, this magic powder that she called Peaceful Warrior. And it's basically, magnesium that crosses the blood brain barrier.
And she's like, just take this. And I was like, I loved her and was obsessed with her, and I was like, I will do whatever you tell me to do. I took it, this little drink, you know, for two weeks, and I woke up one day and I was like, woah.
Just felt relaxed?
I was like, where is that constant vibration I've been living with for so long I didn't know I had it. So I would say the I had become so accustomed to, like, a you know, I think anxiety is is really it is really complicated. Right? Because there are anxious thoughts, there are anxious sensations. Right?
And then they're, like, anxious feelings. And you so, I mean, yeah, it kind of sometimes it's all happening at once. I've and maybe maybe what's happening, Scott, I've really never had this kind of conversation, so thank you. It's fascinating to be, like, hearing myself talk out loud. Like, the it's like I don't identify as a diabetic.
I'm a, you know, I'm a person who lives with, among many other things, right, type one diabetes. So I don't want to be called anxious because like everyone, I experience anxiety and sometimes it's normal and healthy, which we should be worried about things, and sometimes it it borders into, you know, unskillful and unhelpful. Like, I love your quote. I've I've already shared it with a couple of clients here, like, that worry is a waste of imagination. I think that's really amazing.
So, yeah, I think I really am obviously resisting, you know, a label in that way.
Oh, no. You and I first of all, listen. If you and I got together, we'd murder each other in five seconds. I you we would you're a pain in the ass just like I am. I could tell just talking to you.
Because I have said, like like, well, somebody I was talking to somebody the other day and they're like, well, you know, like, you're an influencer. I'm like, I am not an influencer. Don't call
me that. Mhmm.
And and they're like, why? It's there's nothing wrong with that. I'm like, I don't know. I don't that I don't don't don't put me in a box. Like, I don't know what that feeling is.
It's like, don't I don't wanna be identified. I don't wanna be put in a box. It feels limiting. Yes. No.
No. I'm hearing it while you're talking. Trust me.
You and
I you and I might be the same person. And so just all of that. Even when I was in middle school, my guidance counselor said, Scott, you should be a lawyer. And I said, but then I'd be a lawyer every day. And and now I hear how you, like, have skipped through different like, you've done different work throughout your life.
I've resisted having an actual adult job most of my life.
And and so
yeah. So, like, I was a stay at home dad for a long time.
Yeah. Very cool. Your kids are lucky. So lucky.
They don't know that, but one day they'll figure it out. And then I pivoted to this. And there's there are times, like, if if you sat here and tried to have, like, a deep conversation with me and said, Scott, the podcast is over, and on Monday morning, you're gonna go to an office, I'd start to cry. Just
I feel like,
no. No. No. No. No.
I'm not built I'm not built for this.
Yeah. The office is a box.
But but even even just the idea that, like, I would do a thing over and over and over again. Yes. Like, that's the part that, like, I don't It's
soul crushing.
And I don't wanna sound like listen. My my mom and dad grew like, I grew up my parents went to the same job every day for their whole life. And, like, I'm grateful for it. And I know there are a lot of people listening who are like, oh, that's nice, Scott. I don't have a podcast.
I'm sitting in my office right now. And Mhmm. And and I'm sure they would love to not be doing that maybe. I mean, some people might love it. I have no idea.
I just know that when I talk about it and I start to go on like this, I think, oh, I sound just like Heather. And when you're talking, I think, gee, you and I have a lot in common. So
Well, I'm glad that you can identify that.
Well well, listen. You might be at the end of this, you might you might be insulted by it. Who who knows? But but also
I'm prepared to be insulted today.
We're also the same age.
Oh, really?
Yeah. So we grew up, like, through the same time and you know what I mean? Like, there's there's gotta be something to it. Where where were you born in '70?
November '69. Yeah. How about you?
I'm '71. So, like, so we're I mean, we're about the same age. Right? Yeah. And and I grew up through a time where, like, somebody told me, like, I was gonna go to a thing and do a thing, and that's what I was going to do.
I had no expectation about being happy or fulfilled. I was just gonna go do do that job. And I my whole life thought, I can't. I don't wanna do that. But then that's what happened to me.
Right? Right? Like, that was my situation. That's how I got started. And then it's only through I I feel like I've said this on here before, but, like, it's only because my wife who was better raised, better educated, was willing to look past who I appeared to be to find out who I was.
Does that make sense?
Totally. Yeah.
Like, Wow.
She pulled
me out of a world by, like, offering me space in hers, I guess. Yeah. And then, you know
She's a keeper.
You know? Thirty years. I I'm sick. Yeah.
But That's amazing. Somebody I definitely haven't done that.
Well, somebody asked me recently, like, what's the secret to being married for thirty years? I was like, you willfully have to not get married or not get divorced at least twice. There's two times in your life where both of you at some point, like, independently have to go, I'm gonna stay even though I feel like I should set the house on fire and lock all the doors.
That is so honest to you, Scott.
And are you glad you stayed?
Well, yeah, because you don't realize it's it's the same thing with, like, when I see people diagnosed and they're so heartbroken at first. I always say, I'm like, one day you won't feel like this anymore.
Right. You know? Like Right.
Yeah. Think back on all the things you've been upset about in the past that you're not upset about anymore. One day, this thing will be that.
Yes. Exactly. But it's so hard. Like, I look back on that me who was being told by that physician, you know, you gotta chill out. And I was like, he was right, and I couldn't hear it because I didn't have perspective.
And so when I meet people, which I do a lot, you know, who are brand new or new new ish, you know, in their first I think it's I don't know. I'd be curious what you think. But, like, I think it's at least five years, maybe seven before you've been through enough that you have perspective? What do you think? How long do you think it takes?
Does it depend?
Well, so the diabetes is just a new life. And if you
It is.
Yeah. And if you think about, like, you were growing a life and living in experiences, and then suddenly there's, like, a massive shift. Like, you're still you and you still have all your expectations and your knowledge and your and your your memories. But the but suddenly somebody brings, like, a whole new, like, world and says, now you have to live here as well. Like, you have to blend who you are with this new thing.
Yes.
And the only way that can happen and I don't wanna say through acceptance because one of us can sound like a hippie, but it shouldn't be both of us. I'm gonna say that the only way it happens, the way I put it is, you have to have enough experiences over and over again until instead of until it the outcome isn't you going, oh, no. Something new is happening. It's a thing that you just are so accustomed to, you don't have to think about it. Like, the way I always kinda think about where I am with diabetes now and where I feel like everybody will get to at some point is that when you approach a closed door, you don't look at it and think, oh, the door is closed.
I have to reach my hand out and grab that handle and turn it and pull the door to get out of here. That just happens as you walk towards the door. And I and I think diabetes turns into that eventually. Like, there's all these little functionally important steps that you take every time you do one of those things, but eventually, have enough experience that you don't think about it. It just happens.
And so
That is a really great. Honestly, that that metaphor of the door is such an op like an obvious one. That's great.
I only came up with it years ago because I was looking at a door when I thought about it. Had I been looking at something else, I would have made up a different metaphor at the time, but, like, I I appreciate that. It it's just that there's you don't realize how many things you do in the course of a day that have so many pieces to it, so many steps that you just you just mindlessly go through because your body reflexively knows what to do. And then suddenly, somebody throws a thing at you, and you don't understand any of the steps, and it feels like you're gonna die. It feels like you're never gonna get the door open.
But that's not true. You just get up, keep going. Eventually, you'll forget how bad you felt today. You'll be in the future. You will look back, not even recognize yourself, and walk through that door effortlessly.
There. And the foundation of that is good tools. So the answer to your question is, how quickly do you get through it? That I think is two it's two pieces. When do you get the tools and the understanding?
And to me, that means understanding how insulin works. And then how long does it take for you to have those experiences over and over until they feel normal? Mhmm. That's it.
That's it.
Thank god I
didn't get a
real job. This this this podcasting thing is for me.
It's totally for you, and you're giving a lot of wisdom.
Oh, please.
I think there's a if I might add just a third layer to that.
Please.
And that's the develop and maybe it's woven into the one or two layers. I just feel like I need to, like, I don't know, add to the conversation. But it's that kind of emotional, psychological ability to flex with the myriad uncertainties in diabetes. Right? Because as much as now we have tons and tons and tons and tons of data and technology, you know, many many of us, most of us in this country, we're fortunate.
There is still mystery, and it's that, you know, unpredictability that you can have all the tools, you can have all the experience. But, again, to kinda go back to the the mindfulness toolbox that I've I've been working on, you know, for a very long time now, the the tools to roll with the sorrows and the surprises and the I'm doing everything right or I'm doing everything that I did yesterday and why is it so different today. You know, just the the the uncertainty. I I real and the suffering that comes with that. So I feel like that's the the the deeper, skill set that, I wish everybody had.
Yeah. Well, so what what I think the this little unfolding of this conversation points out is that I'm a boy. So when I get to that part, I just put my head down and keep going. And and and it's really important to get a different perspective, which which is the one you just laid out. And I I am not, like I'm not saying that I don't need that part.
I obviously need that part. I just don't describe it the same way, I guess. And I probably don't and I probably don't experience it the same way. And I don't mean to, like, I'm sure it's not as easy as gender, but I'm just using it for the like, I think that what I just said needed a woman's touch. I just as if what if you would have gone first, I would have been like, hey.
Hey. Here's some more of the functional side of it that I think is important. I think the blending of that is what gets you to it.
So true.
Yeah.
I I do I do agree with you totally there, and I recognize that these things come in a lot of different languages and styles. Because I I did hear on one of your recent podcasts, and I'd love to understand more about this, but I guess you've got some pilot thing, some twenty one day thing where you're yeah. That sounds super, super cool. What can
you haven't told anybody.
I haven't really talked a lot about that yet. I'm happy to. I just I realized the other day that I I'm probably one of those people that puts out more stuff than I even have time to tell people about, if that if that makes sense. So Uh-huh. The thing you're describing right now is not actually live.
It's live on my website, but I haven't linked it to anything. Like, there's no way for you to know it's there. So I'll fix this.
Yeah. Yeah.
So right. Exactly. Well, I wanted to slow walk a little bit. I actually got about 50 people who demoed it for me. And I took all their their input and blended their input into a like a final idea.
So so basically, the the pro tip series of the podcast is management stuff.
Mhmm.
And it's I don't know. At this point, honestly, it's twenty five, twenty seven episodes, something like that. I would tell you that if you listen to the pro tip series and even halfway understand it, your a one c will go into the sixes. Mhmm. And I think things will get easier, etcetera.
But a lot of people don't like listening that long. And so I created something called the small sip series, is shorter sort of like ten minute episodes that I don't wanna say mimic the the pro tip series, but they give you the essence of it. Mhmm. Such that, hopefully, you'll think to move on and try longer form to get to a thing. And so I created kind of like a twenty one day, like, a guided reflection, I guess, is maybe the best way to put it, right, about living with diabetes.
So you you get a I don't know. The there you get to the first day. There's this you sort of read about what it's about. You hit a little acknowledgment. You move on.
I can actually reset mine so I can go back to the first day. It's a practice, not a course. Like, there's no pressure. You do it at your own time. You know, there's kind of you know, there's five phases to the entire twenty one days.
So, like, the first phase is the first three days. It's sort of like a settling, like a calming of the nervous system. There's no technique talked about. Just sort of kinda gives you permission to get going. Days four to seven, more about CGM literacy, all about observations, nothing to intervene.
Days eight to twelve, vocabulary for everything that's happening to you. Days thirteen to seventeen, like tiny little experiments, also pure observation. In days eighteen to twenty one, you sort of identify work, recognize who you've become, and then there's an optional twenty second day where you could do a share, like write a note to your care team about what you've learned and what you would like to do moving forward. As you thank you. Well, no.
As you step through it, like, day one, I'll give you just a a brief example. It just tells you there it gives you an affirmation. There's a little quote from one of the episodes. It said the quote is when you understand what's happening, diabetes stops being something that happens to you and becomes something you're doing. And that shift begins the moment you start to look.
There's an affirmation. I'm not behind. I'm starting. And then the noticing, notice how you feel when you check your CGM today, not the number, but the feeling. Are you curious?
Does it feel you fill you with dread, tiredness, nothing? Just notice it. And then there's an option to listen to one of the small sips episodes. And then at the end of the day, you there's a reflection. What did I notice about my relationship to my CGM today?
And then when you're done, you mark that day complete, and it takes you to the second day. I saw some people do it twenty two days in a row. I saw some people take two months to do it. But no matter how long they took to get through it, their feedback was all the same.
What was the feedback?
They found it just comforting, enlightening, told them things about themselves, gave them ideas about what to do next.
“You built an applied mindfulness program”53:26
See, in my in my language, I would say you created an applied mindfulness diabetes program.
Well, do you wanna know what I what I hold on a second. I'm gonna be honest. Let me take a drink.
Yeah. Yeah.
So what I did like, my thought was that I've heard from enough people over enough years. If you listen to that series, you'll do okay. And that's not a selling point to a lot of people. So I went and I looked at how people make money helping people because self help or guided help is a big industry. Mhmm.
And I I basically sat down with my business partner. You might know him. His name's Claude. He's French. And
he Claude Anthropic? Yes.
He and I he and I chatted for a while, and I said to my buddy, I said, Claude, listen. I have everything they need here, but I have no desire to make money from it. But I do think that that that model that people use in the business world is attractive to people for some reason. So let's use the model, but make it free. And then that that was the the where we started.
And then I said I wanna base it off of the pro tip series, but I don't wanna give them hour long episodes when we're offering them content. So let's give them shorter stuff. So let's match up the small sips to the pro tips to do that. And then I don't know. Then I just I spent time working on it, getting it to where I thought it was good.
And then I reached I was lucky enough to have a community I could reach out and and I didn't wanna publicize it. So I'm lucky enough to be able to say, hey. I need help with something. I'm not gonna tell you what it is until you email me. And still 50 people emailed.
So I was like, okay. Here's what I've got. Like, do it. Don't do it. It's up to you.
When you get done, if you get done, would you just send me your feedback? And some people were it is really interesting because some people's feedback was just like, this was worded oddly. Like, on one day, I didn't understand exactly what this meant. So I fixed it. And in some places, they were like, this is perfect.
Don't touch any of this. It's somebody found a typo. You know what I mean? I was like, oh, awesome. Thanks.
You you like, so everybody's input helped, and then I got it back. And now I have to figure out how to put it into the world because I'm not gonna sell it. I'm not gonna be like, hey. Here's the steps to your like, I I don't have that in me to talk to people that way. And so I have to find a way to get it out in the world.
And I figured what I'll do is I'll this time, I'll publicly say what it is and invite people to use it, make sure they understand it's free, and it doesn't there's nothing at the end that asks you for money. It's not an incomplete journey. It's not like a third of the information, and the other two thirds come when you pay me $3,000. Like, it's nothing like that. And so, like, once I figure it gets out there and people have a good experience, they'll probably share it the way they share the podcast.
So, you know, anyway
Very, very, very cool.
Thank you.
Deep listening, and body fullness56:35
Because it really is it's you know, one of the definitions I like of of mindfulness is it's a deep listening practice. Right? So it's awareness. It's awareness. It's listening to ourselves, listening to our our thoughts, our our sensations, and our emotions, right, and our experience.
And so that's that's what your that's what I hear your program offers, which is really essential, right, if we're just going off of data, with our diabetes and not connecting it to our bodies, you know, I like the term body fullness. Right? Connecting connecting what what is a what does a low feel like? What does a high feel like? How does our body respond when we see the double arrows down, our, you know, our minds, our hearts, our, you know, the the fear?
I mean, like, that is a moment that anxiety is natural because it's those double arrows down are telling us, that we are literally headed, you know I mean, it depends on where you are. Like, if you're, like, it's happened to many of us, if you're 70 and double arrows down, that's that's scary. If you're 350 and you're double arrows down, you're celebrating. So even, you know, noticing the differences in your responsiveness or reactiveness, you know, in that that data. It sounds like your, you know, your program is really connecting all that.
I hope so. It's just so cool.
Thank you. I I listen. I'm just a person who like, I've been doing this. This is my twelfth year making this podcast.
And Long time.
And I feel like I keep getting insights into people. And that sometimes those insights are human and sometimes they're more generational or of the moment, if that makes sense. Like, there I have been at this long enough where I can tell you that the zeitgeist wants different things at different times. Mhmm. And and there's a way to meet I I swear to god, I hate saying stuff like this, but there is a way to meet somebody where they are.
Like Mhmm. But you have to keep shifting. You can't say, I made a thing. Use the thing. Because then then society shifts, and they're like, well, yeah.
I mean, I heard that thing looks old, or it's not how I think about it or whatever. Like, you have to keep pivoting with everybody if you wanna I found a way to help them. Like, the the the blessed truth is go listen to the pro tip series. A one c will go in the sixes. But that's not how some people wanna be spoken to.
That's not how some people wanna learn. So you don't just take you don't just take all this information or this collection that you know works and go, well, that person's not interested in listening to a podcast, so screw them. They don't get this. I think, let me find a way to reach the people who would prefer to do it like this. Let me find a way to reach the people who would prefer to do it this way.
I recently, I produced a bunch of songs that are based off of the content in the podcast. And so, like, for little kids to teach them a little bit about their diabetes for tweens. And then I thought, well, this is it feels hokey to do it for an adult. Right? Like, I wouldn't do that.
But what I ended up doing was looking at the conversations between myself and Erica, who I mentioned earlier, Erica Forsyth. She's a therapist who has type one for, god, Erica's had type one for, like, thirty five years maybe. And she and I have these kind of deep conversations about things that I don't think people talk about very often, like worry being a waste of imagination or, you know, that that sort of stuff. And what I learned while I was while, again, my business partner and I were talking is, like, is that I yes. I could take an episode of the podcast, the a pro tip of the podcast and turn it into, like, a ninety second jingle that a five year old could listen to and understand about their diabetes.
But I was like, I wonder if we could turn the mental health conversations into actual songs. Like, what are songs? Like, songs or poems that are that are musical that make you feel a certain way or make you remember a certain thing. And I did that. I came up with a number of adult like, it's weird because it's AI and people like, some people are gonna have a feeling about that and that's fine.
But I'm telling you that they're catchy. You if I didn't tell you they were made with AI, you might not know. And they somehow take the essence of those conversations and build it into into something that, like, actually people I'm getting notes from people like, can't believe I'm crying listening to a song made by a computer. And the point is it's not really made by a computer. It's made by our conversation.
And my dozens of and my, you know, dozen years of having talked to people with type one and being able to lead a conversation with Erica who also has really valuable, you know, additions to make to the conversation. Like, the the conversation is writing a song. You just have to find it and pull it out of it. Just like the pro tip series was writing the guided meditation. You just have to look inside of it, find it, and pull it out of it.
Yeah. And I only figured that out because I have access to AI now. Because I used to spend Heather, you said you've been working on your thing a long time. I I bet you you and I are having the same experience, which is like you look and you go, it's all here. I don't know how to put it together correctly.
Mhmm. And because my brain couldn't hold it all at the same time and Mhmm. And rewire it. But Mhmm. Conversationally was something that could hold all the ideas at the same time.
It it helped me lead me through and then I was like, yes. Take that piece. Put that piece with this piece. That's what this is for. And then I it was just sort of like having a it's like having a virtual blackboard that's kinda infinite.
If that makes sense. Wow.
It does. That's really it's that's really interesting and really, really exciting because I I am definitely, like well, like so many of us. Like, music is it speaks to us and tap helps evoke things in us in unique way.
Yeah. And you have to just get past the embarrassment of it gets like, someone's gonna hear that one of those songs and go, that is so stupid. And somebody is gonna hear it and think, oh my god. That really touched me. And I have to have the I don't know what it is I have to have, the zen to step back and go, some people are gonna look at me and say, wow.
Thank you. And some people are gonna look at me and go, you're an idiot who's blowing up the world with AI. And I have to be able to go, okay, and just keep going. That great like, it helps some people. And so that's the win.
And everybody else who's not helped by it, I'll either look for another thing that might help you or I'll take your condemnation and I'll go. And by the way, lately, if you look at my Instagram, I've been turning my bad reviews into songs with AI.
No way.
It's partially for my own amusement, but and and it helps me learn how to use the like, you can imagine, like, if you're trying to teach this thing how to help you with something, like, how difficult is it to teach it to, like, turn a bad podcast review into an actual singable song? And it's a so it's like it's a fun exercise. It helps me learn how to use, like, different tools and stuff like that. And it makes me laugh because I wish the people knew how much I don't care.
Yeah. That's fun.
I didn't grow up in your I didn't grow up in your online world. I can't see you. You don't exist. So
That's maybe partially generational thing too.
For sure. But I thought did I you said you had kids. I taught it to my kids. Like, when the when the phones got, you know, in everybody's hands and everybody was online, they're like, oh, this person's bullying this person. I'm like, listen.
I'm not for bullying anybody. I'm like, but I don't understand how you got cyberbullied. Turn don't look at it. Over. Yeah.
It's over now. Like, my neighbor, I know for sure, Heather, I live across the street from an actual crazy person. Okay? Mhmm. You'll just have you'll just have to believe me.
Mhmm. I that that woman hates my guts. She hates me. But you know what I do? I don't talk to her, and I'm not aware of it.
You can't let it in.
I just don't is that how people put it? I just think, like, it doesn't doesn't exist. What do I care? Yeah. So Yeah.
So please tell me how like like, the the the thing that, you know, where someone found you at. Like, what's this mindfulness thing look like in person? I mean, how can people, like, go see you in person? How does like, what do you think they get out of it? I wanna hear the whole thing.
Oh, great. I'm I'm so happy to talk about the diabetes sangha. So yeah. So I bet, you know, I told that story about how I discovered this MBSR thing changed my life. Everybody with diabetes needs to have this.
How do we get this out? Blah blah blah. Right before the pandemic, I had been, approached by, an amazing young man, Sam Tolman, who had connected with who's I don't know if he self describes as Buddhist, but he's a very he has a very deep, very deep practice and, you know, does he does all the all the things. And he had met Bill Polonsky, who I mentioned earlier, who had been my mentor, and he and I have kept in touch over over the years. And Sam was telling Bill what he wanted to do, and Bill's like, oh, you need to meet Heather.
And so we met, and then he Sam had been connected with another amazing, young woman, Brooke Cassoff, who was in San Francisco at the time, I think, who was into mindful self compassion and yoga for diabetes and had all these all these amazing, you know, training skills, practices, embodied all this stuff. So they were and then there's another fabulous guy who was diagnosed with LADA in his fifties who's out your neck of the woods out in you're in New Jersey? Is that right? Yeah. Yeah.
He's he's on Long Island. And so they were creating this thing that they called the diabetes sangha. There's there's a lot more you if anybody's curious about more of the back history, you can look on the website. And Sam was like, what do you think about this? I was like, oh my god.
This I've been, like, waiting
for somebody to do this.
You know? I didn't know how to do it, but, yes, this is perfect. Go. I'll be a part. And then I was like, these young people have it.
You know? They're really savvy. I think I had already pretty much gotten off of social media by that point just because I I can't I couldn't really handle it. Mhmm. I'm not I it's it is more powerful than I am.
So I was like, I don't wanna I don't wanna be a part of this. So so I was like, they they can do all that stuff. So go go go. So they got this thing started, and sangha just really means community in, I don't know. Is it Pali or one of those, languages?
And so diabetes sangha. So it's an online community for people with type one who want to come together and have a mindfulness based, you know, meditation space Mhmm. Where we communicate, connect, practice together. And it is really growing thanks to, you know, everyone's efforts and word-of-mouth and, yes, social media and all the all the things. And it is I think
it
offers so much community and, you know, the the suffering that is inherent in diabetes, which I I believe is unique. I have I have another autoimmune disease and, you know, for a while, I was really when I thought I was diagnosed with, ankylosing spondylitis about eight years ago, and I was like, wow. This is weird. This is different. This is, like, accompanied by a whole lot of physical pain, which diabetes for me, thankfully, doesn't doesn't have.
That's not an element of it for me, right now. So the physical pain and then all of that. So I kinda went down into that community for a while, and then I was like, you know and all of these other autoimmune diseases, you know, were all in this whole big community, you know, celiac, Hashimoto's, all that stuff, you know Yep. RA and Crohn's, all that. So and they all seem to have things in common, like what flares, you know, and there's there's a lot that's very, interconnected.
And then through it all, I kept thinking diabetes is so different. It is so different. None of those diseases can you die in an instant if you get your medication wrong. Yeah. None of those conditions have this breath by breath, moment by moment responsibility to stay alive and to prevent all these horrible things from it's just like so it was very helpful for me, interesting to learn all that stuff.
And then I just had this longing to kind of get back to diabetes, you know, community. And so I think what the sangha, you know, provides and, you know, everybody has their own thing that they get from it, is just that space of a shared grief and suffering and knowing. And we don't even talk about all that all that much. You know? No.
What a practice actually looks like1:10:22
But just being and you get it. I mean, you have a whole podcast for twelve years based on the same thing. You know? This is this is a space where, you know, it's really hard to get it if you don't live it or, you know, in your case, be a a parent living with it, which is a whole another, you know, way to way to suffer. And so, you know, the community is really around people wanting to build these practices.
And I you know, the last couple of years, I've really been working on what what are called the, you know, in in the Buddhist language, the Brahma Viharas or the the the divine heart practices because they're they're very they're, again, they're they're skillful. I like this stuff so much because it's practical and, you know, it's not like new age y or whatever. I mean, it's so old and these tools are so helpful for the suffering that that diabetes brings. And in in it, as we practice together, there's all this joy. Right?
There's all this gratitude that is right, dancing with the sorrow. It's it's, it's palpable, and we we talk about that. And I don't know. There's just there's a lot of love. And so the the four divine abodes are these practices of loving kindness, compassion, joy, which are like the warm, you know, fuzzy feel good experiences, practices, ways of being, and then equanimity, which is that all which, you know, you seem like you've you've you do well with that.
I know, like, my husband is much better at that than I am. But equanimity is that practice of walking evenly on uneven ground, being you know, not being so bothered by things, like staying steady, practicing a steadiness, a steadiness of mind, of heart, of being when things are unsteady or unpleasant or even when they're, like, really pleasant, but, like, not getting, you know, taken away by either the, you know, super highs or the super lows. Like, staying maintaining that kind of steady steadiness steadiness of mind, steadiness of heart. And, man, those practices are so helpful. Yeah.
I Trans yeah.
Go ahead. What's it's wonderful. I I it's it takes a person who's been involved in something like this for so long to put all those pieces together. Real really. And and to to be able to offer to another person without them having to spend all the time you had to spend to to make it one cohesive idea.
That's it's just lovely. I I would tell you to the the part about you know, I I just sort of think that all the things around me, they're not me. Right? Like, no matter where you put me, I'm me. And so, I mean, close your eyes.
Right? I'm still I'm still me, and I can't see any of this around me. It just doesn't exist. And when I open my eyes and it's there, I I don't I don't have the anxiety that says, oh gosh. That thing's been in the corner of my room for a year and a half.
I can't believe I haven't thrown it away. Or, like, or done the thing I said I was gonna do with it, or how come we haven't done this? Like, I'm happy wherever I am. And unless something's literally hurting me or the people I love, I'm okay. That I mean, as long as I'm okay, I'm okay.
But I think part of that is, like, I grew up really broke. I didn't have a lot of expectations. I lived through things where it was very hot or very cold or not a lot of food all the time, not a lot of Mhmm. Like, support all the time. You know, there's not always the the feedback from parents that you would hope that a parent would give.
There was, you know, you live with a lot of, like, insecurity and, you know, and and unevenness. And then I don't know if it's a decision you make for people, but, like, I didn't want those things to hold me back. And I really did think, like, the this this won't last forever. Like, so Right?
Like You had that perspective even as a young person.
I think it helps a little that, I'm adopted. So so I'd never, I was adopted as a baby. I don't know another way to both of my parents are dead, so I don't feel badly saying this out loud, I guess. I was adopted by very nice middle class people. And it didn't take me long in my life to realize that when something came up, I had a completely different reaction than they did or an idea about how to move forward or what I thought was important or scary was different than what they were bothered by.
And I later in life sort of I don't know. I sort of started to think about that as like I don't wanna say intelligence, but like capacity maybe. Mhmm. And and so I I I don't know. Like, it I wasn't tied to their reactions the same way as you might be in a more nuclear family where, like, everyone has the same reaction.
They think the same way, so they're reinforced all the time. Like, mom's scared. I feel like mom feels I'm wired like she is. I'm scared too. This must be scary.
Like, my mom would be scared, and I'd think that doesn't seem right to me. Or, you know, where they'd focus on something, and I'd think that's not the thing I would be worried about right here. And so then it just teaches you then you watch and the outcomes go the way you expect, and then that just built on my confidence. I was like, oh, I I think I'm right about things sometimes. Like, I'll learn to trust myself better.
And now if you ask me, the way I usually say it on the podcast to be lighthearted is, like, if the zombies come, you come find me. I'll be okay. Like, we'll we'll be alright when it's over.
And and I That's fantastic.
And I don't know why other than to tell you that often when a question arises, I seem to do a thing or have a reaction that ends up in an outcome that is good. I I I wouldn't even begin to tell you I know the right thing to do. It's not it's not like I assess. I've I've I don't know. Maybe you this might be interesting for you, but do you have a do you have an inner monologue?
Can you hear a voice in your head?
Oh, constantly. Yeah.
I don't have one. Wow. So when you think about things, do you think through like a like, a checklist or, this will happen then, okay, then I'll go to this and this. Like, do you have, like, a thought process you go through when you make a decision? Probably.
It's not always so linear, but there's plenty of there's plenty of thinking happening. So you don't have that.
No. I just know what to do. You just ask me something or put me in a situation and I pause and then I do the right thing very often.
So that response comes from where?
I have no idea. Don't understand it completely. I don't have a I don't have a linear thought process. I don't even the things I'm going to do today, I they're not planned out. I don't have a to do list.
I just do what makes sense to me in the moment.
That is a certain kind of intelligence, I think.
I I don't it might be. It doesn't apply to anything measurable. I was a terrible student. I'm very bad at math. I I wrote a book.
Like, I'm a published author. The last the last thing I did after I wrote my manuscript was ran it through word to find out where the commas were supposed to go.
Like, I
was like, I don't under I don't understand punctuation. I don't understand. I I had to drop out of algebra. I I couldn't wrap my head around it at all. But I don't know.
Bigger thoughts or, like, that kind of thing, that sort of just comes to me. Yeah. Yeah.
It's definitely I mean, it's so unfortunate that that is not encouraged, allowed, nurtured, etcetera in school, but maybe you didn't sounds like you actually didn't even need that.
Scott, you I didn't care about that.
You didn't care? Yeah. You didn't care.
I I really I so genuinely don't care what other people think about me. It's hard to put into words.
Mhmm.
I do wanna be a nice person, and I do want people to look at me and think I want them to see, like, who I actually am because I know I know that, like, I'm brash on the outside. And, like, I'll say to some people, like, I know I come off like an asshole, but I'm not. And or, like but I think that's just because the social norms that go around pretending, I'm not good at. Like, I really did make that twenty one day thing just to put the thumb in the eye of people who are charging people with diabetes a bunch of money to learn how to pre bolus. Mhmm.
I was like, that sucks. They shouldn't do that. I'll give it away for free.
Well, you're really lucky that you've gotten I shouldn't say lucky. I'm sure you you worked you worked this out, but you've got sponsors.
Yeah. I don't need the podcast. Well well, I just I but that doesn't it's not by mistake. I started making this thing, and my my so my guiding my guiding principle on the podcast is is very much, like, one fold, maybe split into two, which is I get up every day and I think, I wonder what these people need. And then I try and then I try to do that thing.
And I'm very guided by the idea that it should not cost you money. Mhmm. Like, there's no world where someone should charge you to learn about how the insulin timing works or what a pre bolus is or is that or that anxiety or adrenaline might hit you when you wake up in the morning. Like, that that's so that should be something somebody tells you. So when I realized I wanted to do what needed to be done and I didn't want people to pay for it, I thought, well, someone's gotta pay for it.
Who's that gonna be? Mhmm. And my first thought was, oh, I'll let Omnipod pay for it. Mhmm. Because I used to because I used to write a blog for them, and I thought, well, I'll just get them to buy an ad on the podcast.
Podcast.
Yeah.
Yeah. And then I did that. And then I was like, oh, well, they did it, and that worked out for them. I'll go ask Dexcom. And then, like and then I was like, okay.
Well, they seem happy, and I'm still helping people. And then people would say, well, you now you're only gonna do what your what your advertisers want you doing. I was like, no. You don't know me. I don't care about that.
Like, if they if they don't like it, then I'll go find somebody else to do it. Like, I'm not gonna do so for a while, I used to have a problem where people thought this was like an Omnipod Dexcom podcast because they were the advertisers. So when I realized that was a problem for people, I went, oh, I'll go get more advertisers so that you know that I don't care which pump
you have.
Right? Right. Like Right. Right. So just because my daughter uses an Omnipod doesn't mean I don't think you wouldn't benefit from a MiniMed Flex.
Like, do you know what mean? Like, if that's the right thing for you, then rock and roll. Like, go. Yes. And so, like, when you built, like so every time I address the problem, it just made the podcast more powerful.
Yeah. Right? Because it it there was more financial backing to give me more time to sit around and think about like, that twenty one day thing, you don't know me, but you might know me better now from this conversation. I don't functionally have the ability to sit down and map that out. Like, that was all conversational.
I came up with that. Mhmm. Right? And I wouldn't have been able to do that three years ago. I actually wouldn't have been able to do it nine months ago.
It's only that the AI, like, voice models got good enough to hold the like, I need somebody to talk to out loud and remember what I'm saying.
Mhmm.
And so, like, so once that was possible, was like, oh, I can work through that. Building that thing took a long time. Like, a lot of car rides for hours talking to AI and having it keep notes for me and then sitting down and hammering through it, making sure it's the way I wanted it to look and all that. Like, no one's doing that for you if they're not gonna charge you $3 to go through it. Okay?
But I am because Right. I don't care about the money because I have advertisers. And I also have a theory about money that that there's only so much, and then I don't think it makes a difference after that.
Mhmm.
And so if you're if you're comfortable, you don't really need more. And and so if you're not driven by finding more money, then you can be driven by finding more people to help. And then oddly enough, sometimes money just comes from that anyway. Yes. So yeah.
Yeah. That's all. That's that's I figured the whole thing out, Heather. Only thing I can't figure out is how to get taller. That that one.
How would you, like, be better if you were taller? Why do you wanna be taller?
Honestly, it's good that I'm not taller. I mean, Heather, if I was a little taller and slightly more handsome, I'd be the governor of a small state. And and and I don't think that would go well.
I And then you couldn't do this podcast.
I joke with people all the time. You're lucky I'm a well intended person, or I would take all your money. And I would have no trouble accomplishing it. I I know the steps. I just apply the steps to good stuff.
Like like yeah. Yeah. Thank god. Well, listen. You're not kidding.
I like, there's people who joke sometimes. They're like, that that podcast is a cult. And I was like, wouldn't that be funny if at the end I was just trying to get all your wives
together? Oh my gosh.
My wife always tells me, she's like, if I ever die, there are gonna be a line of ladies who have kids with diabetes out front holding casserole dishes.
My gosh. Ladies with casserole dishes. That is a very funny image.
She's like, you are a catch for somebody raising a kid with diabetes.
That's a niche.
Yeah. I've got I've got that market covered. We can all go, we can all go have a second life baby with an AI with an autoimmune issue.
I don't know if that's a a category
I'm dating. Point. Not a selling point. Would you like to make a baby with joint pain? Come find me.
But where are you, do you said you have kids. Do they have any autoimmune issues?
One daughter with celiac.
Okay. Alright. Is that you raised her with that, or did she get it later in life?
Oh, yeah. Probably at five, and then another daughter who also has, ankylosing spondylitis.
Oh. So So
tell me. I hear people who have type one and celiac often say if I could give one of these away, they'd give the celiac away. Do you have that feeling? Is it that you find it difficult,
I guess? Have that feeling. Yeah. I think it's funny because I actually heard that I used to facilitate a teen support group in in San Diego, people with diabetes, and one girl said that. She's, like, 13, and she was like, man, celiac is so much harder than diabetes.
Again, I don't I guess I don't like to give, like, very yes or no clean answers. I think it probably depends on the person in the day, you know. So so because I as I've heard you talk about with other people, I mean, diet type one diabetes, if you're paying attention, get basically gives you a gives you disordered eating, and celiac kinda does the same.
Yeah. It's I I don't think people think of it that way, but it's a 100% true. Like, you you get a weird relationship with food when you have type one. Yeah.
Oh, yeah. We're never not thinking about it. Like, a friend yesterday was telling me about this great new app that you can take a picture of your food, and then it tells you if you add this, then it'll be that much more nutritious. And I was like I was like, I am so not interested in an app about my food.
May may may I make a suggestion to everybody listening? Stop making apps. Okay? I've been I've been at this a long time, and the number of you that have come to me and gone, I've made an app, and it's gonna I'm like, no. It's not.
It's not. It even if it does, it's not. Because you know why? Because you can't get it to people. That's why.
That's why that's why poor Heather's here telling you about, you know, the the mindful I I lost the web page now. I I had it open.
Diabetes sangha.
Thank you. Yeah. I wanna I wanna give the URL, but I lost it. Hold on a second. I'll get it back.
The because it's nearly impossible to get people like, to get your thing to anybody. Like, the thing that I just described or even the pro tip series or any of that, like, I'm completely confident in how it helps people. Most of my job is getting it into people's hands. Mhmm. Like, if you wanna know what I what I toil at every day, it's finding ways to let people know, hey.
There's this thing here. It's free. It might help you. You should check it out. Right?
Mhmm. Diabetes why why you gotta pick a word that has an h in a weird spot?
I know. Sangha..com. Diabetessangha.com.
The sangha, and a retreat in Monroe1:27:48
Yeah. I see you're you're leading something tomorrow.
I am.
Yeah. I see it.
8AM Pacific time, 11AM eastern time. Mindfulness So all of those are are free. All the offerings. Most of the offerings are free. We do, there's a retreat coming up in New York this October.
People can check that out if they want a multi day experience led by Sam and Peter. Amazing, amazing humans.
Monroe. Can I tell people? Monroe, New York, October eighth to the eleventh, fall immersive retreat twenty twenty six. An immersive meditation retreat for people living with type one diabetes. Diabetes I I'm not connected, by the way.
I don't make money for this. Diabetessangha.com. You should check it out. Looks cool.
Yeah.
Very nice. Look at that. And and are you there live?
Yeah. Well, the the retreat is live. Yes. The retreat is live.
You are you there? I'm I'm asking.
I oh, I haven't decided yet if I'm gonna go. I did a Brooke Cassoff and I led a live retreat in person, and I was there in out here on the West Coast in April. I have a lot going on this fall, so I'm not sure if I personally am gonna be there. But lots of amazing, cool, super wonderful, compassionate, mindful people with type one diabetes who are also very fun. We laugh a lot in the sangha as well.
So, yeah, I think there are generally five, free guided practices, community sessions throughout the week, oftentimes extra stuff on the sun on Sundays. People who are interested in just, like, showing up in silence and not talking have options to just being in the space with people who have diabetes. There's a lot of sweetness.
I know people listening right now are like, Scott, you should try that. You should try showing up somewhere and shutting up.
It sounds like you have your own ways of listening to yourself, Scott.
I I I I I do my thing. I I just I'm I'm aware of this conversation. Someone will leave a review about this and be like, he did not let her talk. And then
I I talked a lot. Yeah.
Anybody thinks he didn't let me talk, They gotta really pay attention.
On reviews, and what people hear1:30:00
Well, Heather, I'll tell you what I've what I've learned through, joking about people's reviews is one thing. But what what brings a person like, what motivates a person to say, he didn't let that person finish or I was that person was clearly uncomfortable. So I've had a a number of experiences through the years. Like, one time I was talking to this girl in her, like, mid twenties. And I'd listen.
I don't know what we were talking about, but we were joking around about how much her father worked growing up. Mhmm. And and she was trying to paint a picture that I think he had, like, three jobs. And I said, so while you were growing up, you your dad is just that guy that walked in the house, slapped your mom on the ass, ate something, and left again. And she was like, oh my god.
Yeah. Like like, that's exactly what happened. And afterwards, she and I finished. I mean, we had a long conversation. I got this beautiful email from her about how what a great time she had on the podcast, and she was thanking me for 16 different things.
And then a week later, I get an interview that or a review that says, could you not hear how uncomfortable you made that girl? And I was like, Well, that's not actually what happened. But I wonder what happened in your life that that was your takeaway from it. Like and and so I've learned a lot that I when you make a podcast like this and you're just talking like this, that when people have, like, really harsh reactions to it, I wish I could find them, give them a hug, and say, hey. You should figure out what happened in your in your life that you think that that this was your response to this.
Like like, because I'm not a bad person or I wasn't making that girl uncomfortable. As a matter of fact, here's a long letter from her about how much she enjoyed that conversation that I didn't ask her for. She prompt she sent to me on her own. And, like and or, like, he talks over people. Like, there's an I have a review today.
I put it up on Instagram. It's like it's like the diabetes pro tip series is excellent. It's full of great information. Jenny Smith is like she lends, like, such a, like, a blah blah blah to it. It's awesome.
The host cuts people off. I've known Jenny for so long. If you ask Jenny, does Scott cut you off when you're talking? She'd say, no. I don't know what you're talking about.
So what, like, what did that person hear? Like, who cut her off or him off in their life that made them feel like that? Like and that's the I don't know. It's interesting to be able to, like, try to see people from in ways that you don't normally get to in real life. Because in real life, nobody's giving you a review of your conversation with them.
Thank god.
Oh my god. Thank god. Are you kidding me? Can you imagine at the at the end of every personal interaction, you got reviews from people?
Oh my gosh. I would never leave the house. I wouldn't I would go walk barefoot in the woods all the time.
I gotta ask you a question. You said earlier, I'm not on social media because it's like, you said something like I'm it's stronger than me or, like what what what is your reaction to it that that you feel like that?
Why she isn’t on social media1:33:02
Couple things. It hijacks my attention. Right? So you you go on Instagram to check one thing, and then twenty minutes later, you're like, woah. What happened?
Mhmm. That wasn't intentional. Like, it's, like, literally hijacks the brain to suck you in or my my brain.
No. Yeah. For sure.
And that and I don't like that. I've always have an embarrassing quote in my high school yearbook. Like, if only there was more time, I could do so much more. You know?
Like like, watch people beat each other up in a parking lot. Yeah.
Yeah. That's just not nourishing or mean, life is so again, it kinda, like, ties back to the diabetes, I think. Like, every moment I feel like it's precious. And, I mean, I don't remember that all the time, but I I I don't like to I don't like to waste time. I hate sitting in traffic, and it's like social media is, like, really bad traffic for my brain.
And so and then secondly, you know, I have family members who have different, you know, maybe politics and, values and things like that. Probably about I don't know. I don't remember how long ago it was before the pandemic, around 2016, probably. I got, what is the word? Trolled, by my stepbrother, and I found my even just remembering it, Scott, like, can feel in my body my heart starting to race a little bit more.
I feel, like, some heat and some Mhmm. Discomfort rising, and, like, it it hijacked me and I reacted and I didn't like how I don't even remember what I said. You know, it was about something political and really irrelevant. And, I got off that and I was telling my husband what happened, and and he just kinda smiled. He goes, yeah.
I trolled you. And I was like, oh, oh, that's what that is. Yeah. And I immediately got off, and I haven't been on Facebook since then because I didn't like what happened to me really. Like, it just it it totally took over
Yeah.
My brain and my being. And I'm like, if I can do that so easily, like, so quickly, like, that's not mm-mm. I can't be it's like a a drug or something that I had a big bad reaction to.
I just had a conversation yesterday with somebody who I really liked, and, and I've met in person and really liked. But she's not but. She makes TikToks about type one diabetes. And and I said I'm I was telling her, like, I'm a little disturbed that, like, that there's so much diabetes content that's trying to hijack the way the platforms work Because I I'm just listen. I'm I'm snobby about it.
Like, I I would like you to always be trying to help people or or putting something valuable out into the world. And I know that that's not a thing that the the algorithm promotes. So it's also our brains don't, go, oh, look. Here's something incredibly interesting and valuable for me. I'll sit and watch this instead.
Like, you you scroll past it pretty quickly. Right? So so even as that person's talking about, like, well, you know, you try to take clickbaity things and turn them into value and, like and I spend too much time on this and my she said my attention span is too short. I I need to fix that. I just had a baby.
I don't wanna raise my baby in a world of, like, short attention span. But then the content is still like, well, this is what the algorithm wants. This is how we do it. And and it I don't know if I'm just older. I sound like an old man telling you to get off your my lawn or whatever.
Like but it's this is not okay.
Yeah. I agree.
Yeah. And and you really I mean, you're listening to a person say, I know this is wrong. I don't want this for me. I don't want this for my kid, but this is how it is. And my thought is, no.
It's not. It we're letting it be that way.
Right. We do not have to do that. I agree totally.
Yeah. This is
I heard of
yeah. Go Go ahead. I'm sorry. You heard what?
Oh, I just I heard a podcast. I I love podcasts, and, it's so so fun to be here. I was listening to one, functional medicine doctor who who really gave me comfort, and he said, I am not on social media, and you don't have to be. It's a lie that in order to have a business that you have to be on social media. And that was, like, the one authority voice that that, like, affirmed my position, I needed that comfort.
You know? I just it was helpful. It kind of helped shore up, you know, what what I felt instinctively. Like, I'm I really am I'm very concerned about where technology is going and, how it's taking us away from what I think makes us most human and taking us away from from each other and ourselves. And so and I know you some people can do it skillfully, and I'm not bashing technology.
Like, I I mean, I'm wearing a tandem and a and a Dexter Libre right now.
You know
what I mean? I'm, like, about going on to the twist. I love technology when it's helpful, when it's skillful, when it makes things better. And, yeah. It's I don't
I've just been alive long enough now. Like, I I I don't know how you feel, but, like, this last ten years, I'm, like, finally an adult. You know what I mean? Like, I I I I finally have, like, enough. And and I'm actually glad you know, I I I I when I was growing up, I used to say, like, oh, there's so much, like, wisdom in those older people, but they're, like, sitting in a chair, like, oh my god.
And, like, now, like, in our generation, like I mean, look, I'm 55. I feel like I'm 20. And, like, I don't have like, I look back at photos of my parents when they were 55 or my mother and father-in-law, like or, like, they're they look like they're 70 now.
Yeah. We're looking better.
Yeah. Like and I'm like I'm like, maybe, like, people our age are gonna be able to stay in the game a little longer to, like, maybe spread out. So, like, it felt it feels like you spend your whole life absorbing wisdom. And right when you've got it, your brain slows down. You have no ability to, like, regurgitate
it and tell anybody about it.
And so I'm like, maybe this generation will be, like, the first generation of people who, like, are able to, like, gather some wisdom and stay relevant long enough to reshare it. And and I and I don't like, I'm I don't anoint myself with things. Like, I'm just there's things I try to do in the world, and I am gonna bang on this pot for a while until Mhmm. Somebody, like, I guess, listens. Nothing that's happening on social media is real.
Mhmm. It's it's it's is literally, like, empty calories, filler for your life, whatever. However you wanna think about it, I don't possibly care. Right? Like, it's if you if you got rid of it right now, you'd be fine.
And and and all we're doing it's like you're you're the grist in the gristmill. And and if it here's one way I I hope that people will think about it. Facebook, as an example, like, talking about taking technology and doing something good with it. I have a Facebook group that today has 86,000 active members in it, And it's a support group for people with type one diabetes. And if you go look at how it works, it works awesome.
It is fantastic for the people that are in there. They love it. It gains usually about a 150 new people every three days. And it just keeps building and building, and it's wonderful. It's a great use of technology.
More specifically, it's a great use of the Facebook platform.
Sure.
But Facebook started as a community platform. It's not that anymore. Right? It's it's an AI company that sells ads. That's what Meta is now.
It's Meta is an AI company that sells ads. And so if if you can still find I'm still finding a way to use their offering for good. But if you're in Facebook, their goal is to keep you in Facebook so that you can be served more ads So that when you click on their ad, you buy the thing. I was I was talking to an audio consultant the other day, and we were talking about something completely just, you know, about technical about making the podcast. And I looked at and we were on video, and I said to him, I was like, hey, man.
I was like, where'd you get those headphones at? And he answered me. And a day later, I was served an ad for these very obscure headphones that he was wearing.
Oh my gosh. See, isn't that so creepy?
Yeah. And I'm not talking about headphones like the ones you all know about. I'm talking about, like, audio engineer headphones that, like, nobody in the world knows exists.
And and your AI was listening to you.
There there it was. Yeah. An ad for those very obscure obscure headphones. Headphones. Yeah.
I don't need them, by the way. He told me I don't need them. And even when it popped up in front of me, my first thought was like, oh, those there's those headphones. Like, I get like
It's not about what we need.
No. It's never about what we need.
Luckily for me, Heather, I grew up broke. I tell my wife all the time that somebody calls the house to sell us something. I I pick up the phone, and I listen to for a half second, I go, listen. If I needed that, I would know. I don't need you to tell me what I need.
Okay? I'm aware of what I need already. And and so like anyway, when I see like, yes, we want to reach more people with diabetes, but the way that my podcast has been thriving for all these years is the way that things have worked since the beginning of time. It's called word-of-mouth. Mhmm.
When something actually helps somebody, they tell someone else and that's how you get more people. You don't get as many as you want. You're not gonna be rich from it. It's not gonna be some overnight success. You're not gonna go viral.
Like, it but it'll reach the people it's gonna reach, and it'll help the people that it was meant to help. And look at me now. I'm a hippie.
Are you wearing shoes?
I'm not currently wearing shoes. Get
outside and walk on the grass.
I am I am barefoot. I Heather, if I told you where I was right now, you'd laugh at me. But, I am Where
are you?
I'm in my office surrounded by a number of, like, reptiles in giant cages.
Oh, yeah. You're into reptiles. Yeah. That's so cool.
It's just there's plants around me and living things and me in here without my shoes on.
So It takes a hippie to know a hippie.
I'm watching these, like, four little lizards run around and have, like, the nicest little life in there. And all I'm thinking is, like, oh, I'm gonna go give them a cricket to eat after I'm done. And yeah. That's so
That's I so great. I love that visual. That is so fantastic.
My kids got older, and I had nothing to nourish anymore.
Yeah. That makes sense. Yeah. I get it.
I needed something to keep alive so that I felt valuable on the planet. Alright. Anyway, you were really awesome. I appreciate you doing this with me. It's a it's a nice this couldn't have possibly gone the way you expected it to, did it?
I I you know what, Scott? Truly, I was like, I have no idea what to expect. I am going in there with curiosity. And, yeah, with curiosity and compassion for both
of us because when you're in
a new interaction, you know, nobody knows. There's just so much uncertainty. But what I did know about you was that you're very conversational and very curious and very observant. So I had a little heads up. I knew something about you, and you didn't know much about me, but that doesn't that's how you roll.
Oh, have
you ever
met in person?
No. I don't.
No. No. Okay. Do you ever do go to the things? I started going to the things this year.
Very cool. Yeah. I think which things I because I do. I have I mean, in I've been in and out of the professional diabetes world, you know, for twenty five years. So sometimes I'm like, I was at New Orleans for the big diabetes educator thing a couple of years ago with Sam and Peter from the Sangha.
We did a really nice talk for diabetes educators on this topic, you know, mindfulness for the educators because, I mean, gosh, Scott, we could do a whole other podcast about how our healthcare system is so strained and our providers need compassion, self compassion tools to ground themselves and stay connected to us, right, with, an open and loving heart and all the information they have. But that's another
Well, they they burn out they burn out just like the patients do.
Totally. Of course. I mean, there's there's so much strain and so much suffering. So, anyway, we did that. That was the last time I was at one of the big things.
Well, I guess I went to TCYD last last summer. So which things are you going to do this year?
I did ADA this year.
Oh, good.
I went to France.
What would you do there?
I actually I kinda partnered with so here's how this started is that last year so I previous to last year, I only do something called Touch by Type one in Orlando. I used to do a lot of JDRF speaking, but I stopped doing that. And I mainly, when I do my speaking, do I go to touch by type one. But, anyway, I went to Friends for Life last year for the first time, and it turned into a thing where I had this experience that I it's gonna sound like I'm bragging. But I I got there and realized, like, I the when I when I left, I thought, oh, I'm gonna go meet new people and tell them about the podcast.
And instead, what I found was a room with 2,000 people in it and three quarters of them already listened to my podcast. And so it was not a it was not a business boon for me, but it was a really it was an interesting experience to watch everybody be together. And, and it turned into, like, just kind of, like, a lovely meet and greet for me. But because I was I I don't know how to put this exact I'm, like, catnip at that thing. And so Mhmm.
And so somebody who makes the thin you know, sugar pixel, that little, like, screen that has your blood sugar on it, like, shakes your bed if you get too low or something. Like, it's a it's
just I a don't know. I've heard you talk about it on the podcast, but I don't know what it is.
So the the gentleman that makes the sugar pixel, his name's John. And he was there, and he's an astute guy. And he looked over, and he goes, that guy is like like, he's really drawing a crowd. And so, like, he's like, would you come with me and, like, do a giveaway? Like and, like, promote, like, promote the podcast and, like, and everything.
I was like, whatever, man. I was like, I'll I'll hang out with you. Like you know? So we did this little, like, I don't know, parade around the hall in Friends for Life, and then we went back in the corner. And we must have had, I'm gonna guess, 300 people with us at that point.
And, like, he gave away a couple SugarPixels. And when it was over, he said to me, would you like to come next year and be at my booth for this stuff? And I was like, sure? So I went to ADA with him this year, and, basically, I'm the pretty girl that leans on the car at the SugarPixel booth. Visually, it doesn't work out that way, but functionally, it works that way.
And and so we did that, and we went to Friends for Life. Next week, I'm going to ADCES in Ohio with John. And they're actually they're I'm good I'm very interested in talking to clinicians about how I think the podcast works. I've just I'm in the middle of doing the survey with listeners to find out about their, you know, their their takeaways from from listening and stuff like that, and probably we'll share that with some people on there. And then I think I do touch by type one in September.
And back in June, I took about a 100 listeners on a cruise. So I did a lot this year after, like, the year before. Like, I was like, I went to Friends for Life and this year I did like a thousand things. So I'm trying to figure out where the balance is around that. Mhmm.
And so I'm working that through right now. So Yeah. It's still interesting. It's interesting to do. It's it's really nice to I'm sure you have the same feeling when you meet people in person.
But for me, it's a little different. I don't have type one. And so to watch people with type one come together and so instantly mesh together and become friendly and calm and relaxed and comfortable was a a really, a a kind of a wonderful learning experience for me. You know?
Does your daughter go to the things?
She doesn't. She's gonna come to, I think she's gonna come to touch by type one with me this year. I shouldn't say that out loud. But because she'll be like, oh, no. She's like, everybody's gonna be around.
Like, no. It'll be fine. Like, she's have a thing at touch by type one I need a little help with. And so I was like, can you come and, like, stand at my table when I can't be at my table? And she's like, okay.
I said, you can lay in the sun the day we get there. And she goes, oh, okay.
That's the incentive.
I was like, I'll bring oh, I said, we'll go in a day earlier. You can you can lay by the pool. And she's like, well, that doesn't sound bad. And I was like, alright. I said, does the rest of it sound bad?
She goes, no. But it's, like, inside. And I was like, I know. So Mhmm. Yeah.
So we're gonna do that. It's nice. We she and I made an Omnipod commercial together this year too.
Oh, wow.
Yeah. Which was
Where where do we find that commercial?
It's just on Omnipod social media.
So Well, so I won't ever see
it. Yeah. You're not gonna see it.
It's I'm never gonna see it.
But it was really, it was a nice experience because it was kind of the first, like, diabetes thing that wasn't about her diabetes that we ever did together.
Aw.
And so it was, like, a nice day we spent, like, you know, just doing the thing. It was it was it was really a nice experience.
That's really sweet.
Alright. That's really sweet.
Well, thanks again. I'll let you go back to I know this is way longer than you expected it to be, so I'll let you get back to your life.
Great.
Alright. Thanks so much. Hold on. It's nice
meet you.
You too.
Okay.
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Once again, I've been Scott. You've been fantastic, and we'll be right back with another episode of the juice box podcast.
Read the full disclaimer
© 2007–2026 Juicebox Podcast. All rights reserved.
#1957 You Just Need to Move On
You Just Need to Move On
Kelly's son was diagnosed with type 1 at five. For a year and a half nobody would retest him for celiac — until a stranger's comment on a Facebook post and a nurse practitioner's cell phone number changed everything.
Jump to a moment
- Two diagnoses, and only one of them got taken seriously. Kelly's son Cooper was diagnosed with type 1 five years ago, at five years old, after weeks of stomach pain that came to a head when he got out of a hot tub. Celiac followed — but the path to it took roughly a year and a half of vomiting, unexplained lows, and being told there was nothing more to look for.
- The answer came from a stranger in a Facebook comment. After a nurse told her to move on — her exact words — Kelly kept posting about what she was seeing. Someone in the Juicebox group asked whether she was sure it wasn't celiac. She had been told no once and had filed it away as settled. That one comment is what got him retested.
- A cell phone number was the other half of it. Through her son's elementary school principal, whose own son has type 1, Kelly was pointed to a pediatric nurse practitioner who handed over her personal number and said to call while it was happening. Being able to report symptoms in real time — rather than describing them weeks later at an appointment — is what finally got the bloodwork ordered.
- A seizure changed her. On a split long-acting dose, at around 160 and with no fast-acting on board, Cooper turned abruptly and seized. Kelly describes it as the thing that set her back for months and also the thing that ended her willingness to accept an answer she didn't believe. Looking back, she thinks he may have needed less insulin all along — because he wasn't absorbing.
- Her advice is about what a doctor's “no” does to you. Scott names the mechanism: whatever a clinician tells you becomes doctrine in your thinking, so a wrong “no” gets permanently subtracted from your list of possibilities. Kelly's version is simpler — if something doesn't seem right, keep asking, keep searching. Cooper now feels better than he ever has. None of this is medical advice.
- Juicebox Podcast Facebook group — The private community where the comment that changed Kelly's course came from.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Bold Beginnings series — Scott and Jenny Smith for the newly diagnosed.
- Touched By Type 1 — Scott's last in-person event of 2026 — free tickets, with Jenny Smith and Erika Forsyth.
Every word of the conversation
Cold open & sponsors0:07
Hello, friends. Welcome back to the Juice Box podcast. Nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan or becoming bold with insulin. Hey.
Head out to t1dexchange.org/juicebox and fill out the survey. And if you'd like to do a little in person thing, my last in person event for 2026 is at touchedbytypeone. Go to touchedbytype1.org. It is not too late to get your absolutely free tickets to their fantastic event in September. Touchedbytype1.org.
Come out and see me. Jenny will be there. Erica's coming. It'll be a great time. Today's episode is sponsored by Tandem Diabetes Care, the Eversense three sixty five, and touched by type one.
There are links in the show notes and at juiceboxpodcast.com to all the sponsors. When you use those links, you are supporting the juice box podcast and helping to keep it free. The Eversense three sixty five is a one year wear CGM. That's one insertion a year. That's it.
And here's a little bonus for you. How about that there's no limit on how many friends and family you can share your data with with the Eversense now app? Eversensecgm.com/juicebox. Now let's talk about Tandem Mobi, the impressively small insulin pump. Tandem Mobi features Tandem's newest algorithm, Control IQ Plus technology.
It's designed for greater discretion, more freedom, and improved time and range. Learn more and get started today at tandemdiabetes.com/juicebox. Touched by type one is my favorite diabetes organization, and they're sponsoring this episode of the juice box podcast. Please take a moment to learn more about them at touchedbytype1.org. Also, follow them on Facebook or Instagram.
When you get to touchedbytype1.org, check out their many programs, their annual conference, the d box, dancing for diabetes. They have a golf night. Gosh. They have a dance program for local kids. Go check them out at touchedbytype1.org and see what they're up to.
Kelly, and a thirtieth anniversary2:27
I am Kelly, and I am a caregiver to a type one diabetic and celiac.
This is your child, this this person you're giving care to?
Yes.
How many children do you have, in total? Two. Two. Are you, wearing a headphone with a microphone boom arm on it?
Yes.
I could tell. Could you move it a little farther away from your mouth?
Yep. And I wasn't sure if that was better or the one that's on the cord.
No. It sound it sounds really good. It just you're I'm getting a little bit of Too much. You don't want me to tell you what I'm getting. Like, right, like, like, I hear wetness in your mouth once or twice.
Oh, interesting.
Yeah.
So It's not but it's my hair. My hair is, like, right there.
Is it is your hair touching it?
Possible. Not anymore.
Good. Well, then let's leave it like that. Okay, Kelly. By the way, thank you for being Kelly on my thirtieth anniversary.
Yes. That was funny. I remember hearing about your wife's, name Yeah. Way back when and being like, aw.
This is nice. I can pretend I'm not ignoring her on her anniversary I'm talking
to you. Happy anniversary.
Thank wonderful. I did flowers. Kept it simple. Mhmm. Considered, a necklace that was pearl and diamond because, apparently, the thirtieth anniversary used to be diamond, but now it's pearl or used to be pearl, but now it's diamond.
One or the other. But I can I can I share with you really quickly? How how how long have you been married?
This will be our sixteenth year.
Okay. Very nice. Congratulations. I I everything I looked at to get her didn't seem big enough. Like, I kept I kept thinking, like, what conveys, like, how I feel about being married for thirty years?
And everything just felt, like, trivial, like, when I looked at it. Like a piece of jewelry, you know, some sort of a thing that I don't think she actually probably wants, a thing that's gonna get put in a drawer or something like that. And I thought I I and I just couldn't find anything that felt as big as how I felt about her. So it's
That's good. Thirty years later.
So instead of instead of getting her something, I told her that. And I said, I I do think you would really like, like, one of the one of the pieces of jewelry I saw. I think you would like it, but I we should go together and look at it. And she was like, that's a good idea. I was like, okay.
So I think we're gonna do that.
My husband and I are so different. I remember the first year, I think he was, like, panicked. And I said, listen. If there's something I truly want, I'm just going to say, hey. I would like to get this for our anniversary, for my birthday, for Christmas.
I think he thought he had to get cards and stuff like that. Mhmm. But what we ended up doing was taking a picture of a card in a store and then text messaging it to each other instead of actually purchasing it. So my husband's been let off the hook multiple times in our sixteen plus year, you know, relationship, and it's worked for us. Yeah.
I've never thought, like, you forgot about me. You know? And now that we have children, you know, for birthdays and things like that, I I always look to him to say, like, you know, what can you do to show our boys that this is how you should treat somebody that you truly care about and things like that. So he includes them a lot more. So we do it a little different.
We don't get, like, a single gift.
Like, hey, guys. Let's go to the Walgreens and find a nice card to take a photo of to text your mom. Have you ever, in sixteen years, caught him reusing an image that you know he didn't go out to text from the store?
No. And after about five or six years, it kind of faded. I just recently started again. I will say with our journey with our type one diabetic and and celiac kiddo, it sort of put a lot of things that we focused on in life on pause. But we've just started to kind of, you know, do it again.
Diagnosed after a hot tub6:09
But
It's nice. Yeah. Well, how long ago was your son diagnosed, and was he diagnosed first celiac or first type one?
So five years ago, as of July, he was diagnosed with type one first. Celiac followed, and that's, where our story got a little tricky.
Okay. Well, tell me a little bit about the initial diagnosis, though. Is it something you saw coming, or did it did it kinda knock you over?
So we had no idea. We don't have any other type one diabetics in our family or anybody, you know, in past years that we could have said, hey. We're starting to see symptoms. We did have a neighbor who was recently diagnosed, and I remember listening to their diagnosis and starting to put two and two together. That would have been probably about a year before his diagnosis, But ours ended up being a lot of stomach pain and just, it really turned into something when he got out of a hot tub.
We had just moved into a brand new house. We had a hot tub in our backyard, and he got out and he was crawling across the floor and said, you know, I I can't do that anymore. Every time I get out of the hot tub, I feel horrible. And at this point, he was six, about to turn seven. So he was young, and I found that kind of interesting for a child, you know, to say, when most kids love swimming and pools and hot tubs, which landed us the next day at an urgent care because I was like, maybe he has, like, an undiagnosed, UTI or something.
I know it's a little bit more difficult to diagnose in boys, and it can cause some stomach pain. And, so the hot tub is kind of what sent us on this journey, ironically. Also,
the amount you paid for the hot tub and thinking that, oh god. Can we not use the hot tub anymore? What are we gonna do with it? It's it's A
100%. And it was post COVID. There was a six month wait. So we had a hot tub at our last house, and we were getting ready to move into this house. And so we put our name on a waiting list.
And people were waiting, you know, six to eight months for a hot tub, and it was being delivered. And we were so excited about it, and then it was sort of like,
this is not
going like it's supposed to. Yeah.
Yeah. Well, so you oh, so you think what made you think UTI? Was he peeing as well?
Yeah. And a lot of stomach aches with peeing. You know, looking back, we had all the telltale signs. He would just drink. Hey.
Like, he would take all of my drinks that were just sitting around and finish them. So we definitely had a lot of thirst. We definitely had some vomiting after eating and things like that. And but he was just hunched over. Like, he was just constantly complaining about stomach pain.
And I guess in my doctor Google searches, that's just one thing that came up. So I thought, well, let's go do a urine sample and, you know, see what comes of it.
Okay. And does that get you the diagnosis?
They yeah. We were probably there at about 08:30 in the morning because he had woken up and didn't feel good, obviously. Obviously. And that we did a urine sample, and we're waiting. And, you know, I'm thinking they're going to come in and say, oh, yeah.
He's got, bacteria in his urine. And so when a doctor and about three nurses walked into the room and said, well, we're not seeing any bacteria, but we are seeing sugar. And I'm thinking, sugar? You know, it wasn't connecting Yeah. Immediately.
And they said, although we can't give you a diagnosis, we are suspecting type one diabetes. And that then sent us to a much larger hospital.
Oh my gosh. That's just upsetting. I mean yeah. Do you are you all together at that moment, or is it just, like, you and him?
Just me. Just me. And, you know, at that time, with a six year old, they look directly to you as as a parent or a caregiver to see what what's your reaction? Is this, a detrimental diagnosis? Like, where where does this take us next?
And I remember just sort of, like, smirking and smiling and saying, okay. Like, we're gonna handle this. We're gonna deal with it. We're gonna head to the hospital. But, no, it was just myself, you know, and my son.
They did do a finger poke while he was there, and, of course, the setting on the finger poke was probably the highest setting. Although Cooper does like that now as his setting. But and I just remember him screaming because he had never done it before. Mhmm. And I remember his blood sugar was four sixty five
Oh.
Which is high, obviously, but not as high as some of the stories you hear about. We were told multiple times you caught this very early, or we were lucky and his body just hung on as long as it could.
Yeah. Yeah. Did you feel any sort of way? Like, when they said you caught it early, did it feel like, oh, good. I did a good job, or did that not, like, translate to you at all?
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At first, but I honestly look back and think catching it early put us in a completely different path, in many different ways. When we got to the hospital, he was not technically in DKA. They told us he was in DK, but they were only seeing very minimal amounts of acid, I guess, as they were saying, you know, with testing urine and and everything else. And because of that and being in a in a larger city, we went home after our diagnosis. We did not stay.
So 08:30AM, we're at the urgent care, finger poking at four sixty five. They're suspecting type one. We go to the major hospital where we have a really good diabetic center, and they said, what we're going to do is we're gonna keep you here. We're gonna run a lot more tests. You know, those were our initial blood work tests to see if we had any other autoimmune or anything else going on at the time.
Mhmm. But within six hours, we were headed home. They gave him a long acting shot of Lantus and sent home. And it was Saturday, and so they told us to come back Sunday. That Lantus was given about 01:00, I believe.
And so they said come into the ER at 01:00 and tell us why you're here, and we will give him a second dose of Lantus. And then Monday morning, we'll start your crash course into what this is going to look like for him and for your family.
Did did they admit him on Monday?
No. He was never admitted. We did everything from home.
Okay.
And they told us it was because we they were not seeing that acidosis part of DKA.
Sounds like it sounds like they did it because there's nobody working on the weekends that does that.
Yeah. Yeah. So, I forgot what I was gonna go with that now. But yeah. So so we went we went home.
I remember I have a type one diabetic friend who is, basically my age. We had, a bunch of other families who had type one diabetics that we knew of, and I remember them telling me, you need to go back to the hospital. And I'm like, wait. What? Yes.
You cannot be home with a kid who has a blood sugar four sixty five and, you know, is possibly in DKA. And I'm like, that's they're telling me he's not in DKA. And so go home. I remember saying to one of the nurses while checking out, what do I feed him? You know?
Because this is new to us. I had I I'm hearing all of the myths that go around it. He can't have sugar. He can't I was more familiar with type two than I was type one. Mhmm.
And they said whatever he wants. Just stay away from soft drinks. No sodas. No full blown Gator Gatorade, you know, like sugars. So stay away from drinks that are real heavy in sugar.
But other than that and I just remember sitting in the kitchen when we got home thinking, I have no idea what to do. I think we ended up doing eggs and bacon, which looking back is a good low carb meal, because I was just terrified to do anything that was, you know, full of carbs.
Yeah. I mean, I I so I can kind of I can see their side of it, and I can and, I mean, if they think he's not in a health they're probably thinking, you caught it so early. It'll be okay. We'll do background insulin, and then you'll come in and get the, you know, the the education on Monday. You'll make it till like, I almost understand that, but it it doesn't it doesn't allow for all the questions and the concerns that are gonna pop up and that you're gonna be by yourself alone at home.
Yeah. That's it. Yeah. It really leaves you on an island all of a sudden.
We we didn't sleep, you know, much of that weekend, obviously, which most people wouldn't. But I I do feel like there is a sense of security in the hospital. When my husband had asked, why were we sent home and we didn't stay? We were just told that they are different, that they have a better grasp on what's going on, and they feel confident enough that he could go home and that kids do better at home. I don't know many people other people who were given that Oh,
that story? Yeah. Well, it's interesting. Well so hindsight now is would you say it's five years?
Five years. Yeah.
Was it was it bad that that happened?
I don't think so.
No?
I remember finger poking, and it brought him down to maybe, like, one thirty, sometimes, you know, close to 100. And then we would spike, obviously, because we were just getting the background insulin. We were not getting any short acting because we didn't know how to do it. So, no, I think we were safe. I I I I think that would have been okay.
I I don't know what they would have done differently if they were just going to give him Lantus until, you know, until Monday, we got that. So, finger poke and make sure he's safe if you need I think they gave us a crash course on treating a low. But, you know, I don't think we had any emergency. I guess if there was an emergency, we would have dialed 911. Like, we didn't have a glucagon.
Yeah. They gave you a meter, though.
Yes. We had a well, I think they yeah. I guess they gave us the glucometer because we were definitely finger poking. But I don't think we got anything else other than that.
Yeah. Literally literally no insulin needles, pens, anything like that.
Yes. Correct. Yeah. Not until Monday.
Not till Monday. So that's an interesting thirty six hours there. What's that conversation between you and your husband like?
We just stared at each other, I think, most of the time. Like, I and, you know, we don't have a CGM. We didn't leave with a CGM, so we probably finger poked 10 to 12 times those first two nights. Mhmm. You know?
Because once the Lantus was giving, they had, you know, told us about a peak time of four hours. You know? And so it was given at one in the afternoon, which would not have had him go low overnight, technically, right, unless his pancreas would have kicked in. But yeah.
Do you have that, like, what did we get I can't believe we got married with a whole the everything's a giant mistake. What did I do? Like, was it existential, or was it more like I just don't know what we're doing and we're gonna sit here perfectly still till Monday morning?
Yeah. I don't my husband's very good. He is all hands on in our relationship, and he understands. I'm a stay at home mom, so I'm very lucky. I did not have to, like, worry about work on Monday.
Mhmm. Obviously, he's the one with the job and doing a lot of traveling and stuff, and so I always try to take on as much as I can. But he knows I need a break, especially when we weren't figuring Cooper out as quickly as we had hoped. So it was just a lot of listening. We had a our first child had reflux really bad as a as a newborn.
I mean, really bad. But he was gaining weight, so nobody seemed to care. We never slept. We troubleshot during that point and just really relied on each other. And so we had already been through something that was, you know, straining on our relationship.
We had been there. We had done that. So this just sort of fit that same narrative. Like, okay. We did it once.
We'll do it again.
Hey. Your first head reflux really bad, meaning and he drank formula, vomited it all up. Yes. It
was horrible. He slept for maybe an hour until eight months. And it It was horrible.
Did you have to go get that how old is that child now?
Jameson is, going to be turning 15.
Okay. And did you have to go get that special formula? Was he breastfeeding?
The formula nobody suggested21:01
Oh, nobody helped. We we honestly ended up in a kind of a similar situation where if you're not getting an answer you think is appropriate, you'd go for second, third, fourth opinions. We ended up with at this point, we were living on the East Coast. We ended up on a waiting list for a GI. He was three months old when I was like, something we have to do something different, but the wait list was six months.
And so by the time we actually got in, social media coming to my help again, some a friend of mine had recommended a certain formula that is already broken down so that his body doesn't have to digest it. It just solely has to absorb it. Yeah. And so we bought it offline. You couldn't buy it locally in a store, and it worked.
He went from not sleeping at all to almost four hours within a week of starting it. So by the time we actually got into the GI specialist, we had already sort of fixed the problem. And then when he turned one, they said he will either have a dairy allergy or it will just disappear. And luckily, it just disappeared.
So So Here here's something that you might find interesting. My first kid had the same exact problem. The one who's, yeah, the one who's not type one. He did develop, Hashimoto's later. Not to say that that's correlated,
but Right.
Yeah. You know, I am gonna look for an email from you if that ever happens.
That would be bizarre. Yeah.
So, yeah, same thing. We had to buy that formula. It was, like, super expensive. And, but he would, like, drink a bottle and then look at you, and it felt like someone threw the entire bottle at you all at once. Yep.
He vomited on Kelly at her grandfather's funeral. Like, it's
just it's just not burp. We would just turn him around and walk, and he would just projectile vomit. And then we would eat again because I think that the formula going down, maybe if he was having some burning sensation, the formula going down the throat was soothing. But then he would throw up, and it was just like this vicious cycle.
Yeah.
“A child never died from crying”23:03
But they didn't care because, you know, his head size measured perfectly, and he was gaining weight. And, you know, I remember a pediatrician telling me a child never died from crying. As I sat in the office in tears, like, I don't know what to do. We're not sleeping. And, you know, we had it again with type one.
Those nights that you're not sleeping add up. Mhmm. And we're eight months in, and I'm struggling. My husband's the one with the job. I'm trying to take on as much as I can, and he was helping for sure.
Uh-huh. And your answer was, yeah. You just need to figure it out on your own. I mean, nobody even suggested to us because we had formula fed from the start. Why don't you try something else?
Yeah. A child never died from crying. Has it ever died from a crazed, sleep deprived woman driving it into a lake? Because I've heard that one.
Yeah. And you've seen a lot. I know. I I asked for help. I'm there asking for help, and nobody wants to help.
So luckily, you know, grandparents came to town, and they would put him in a stroller and walk him around our 1st Floor while we tried to sleep. Mhmm. It was yeah. So my husband and I had been through it before, you know, and then we were kind of seeing it again because Cooper's diabetic story is very similar. We were asking for help.
Like, something's not adding up, and we weren't getting any answers.
Is your first having any benefit for is the house I guess I should ask first. Is the house just gluten free, or is it just for the one child?
At the beginning, we went gluten free for the whole house. Now all of the meals that I make are gluten free, but we definitely have things with gluten in them. And Cooper has in the beginning, I was sort of like, I don't know what to do with this. Do we make everybody do it? And so in the beginning, I just didn't really say much.
And I would say about a good six months in, Cooper finally just said, you guys can have gluten. So we were sort of like, oh, okay. You know? So, but meals are still strictly gluten free. But, yes, my older son does.
I think he would struggle without glutens. But I do have a question for you.
Yeah.
Does your son have any antibodies?
He did oh my god. It's so long ago when he was then he did it. I don't think he had any. No. I mean, I I I'm trying to like, he gosh.
I'd have to dig it out. He we did trial net. Yeah. I don't think he had any antibodies.
Antibodies, siblings, and a creeping A1c25:31
And His Jameson did not either, and then that opened up a whole other avenue for us. We had universities calling us, wanting him to do the MRI study, which I led up to him and he did. You know, all sorts of other interesting things. And I just remember thinking, wow. Is this, like, rare?
Like, why why do we have some and I guess with Cooper being so young at diagnosis, they sort of expect a sibling to have at least one antibody. Okay. And he still does not have any at 15.
Been checked multiple times?
Twice?
Twice.
Twice? Two or three times? And was just recently checked this spring because we had a creep in an a one c, but he's in puberty. And so I panicked. His a one c was hanging at, like, a 5.9, 5.8, 5.9.
And when we went in, the endocrinologist said, yes. But he is in puberty, and that happens a lot, which I was hoping was going to be the answer. Right. But he said, I'm not concerned at all. He did ask me an interesting question.
Does Jameson's father have type one? And I said, no. None of us well, I have antibodies, but none of us technically have type one. And he said, okay. Then most likely, Jameson will be in the clear because a father passing down to an offspring, I guess, is way more common than the mother.
So Jameson has a much greater chance of coming out of this without type one than he would if my husband had his father had.
It's interesting. Any how about your side of the family? Your parents have Hashimoto's or celiac or anything like that?
Nothing. No? We might have a couple relatives with thyroid, but that's not even on my side. It's on my husband's side.
Yeah. No. I was but but you but you have antibodies?
Yes. Two.
That's why I was asking about your side. How about, like, less, you know, common autoimmune issues? Like, I don't know, the ones where the fingers get cold and blue or, patchy color on your skin, vitiligo, or something like that.
Nothing. And my parents are both reaching 80 and don't even take medication for any help of anything. They're super active, super fit, and we don't have we don't really have heart we don't have anything, really. Super lucky.
Little bit of thyroid on your husband's side?
Mhmm.
Okay. How about about I know this is not autoimmune, but any bipolar people in the extended family?
No. No. Nothing.
Psoriasis, bad allergies?
My husband's My husband's side.
Yeah. How about that? Okay. Okay. Okay.
Yeah.
And he has no antibodies. So kind of interesting
Yeah. It's weird.
How we got here.
Yeah. I mean, interesting is the right word, not the wrong it feels wrong when you say it, but, it is really interesting. Okay. So you go back for the education. You get going.
Do they send you home? Like, do you feel, like, ready when they send you home? What kind of technology did you have? What was the first six months like?
Yes. So that week, we got a CGM. I think it was three or four days, and it's a pretty extensive crash course. They are very well known for that. They are very good at getting us to understand what's happening.
So, yes, we felt very confident by the end of that week. Like, here we go. We're, you know, we're ready to rock.
It's awesome. Your goals going for like, forward in the beginning, where is it like, did you understand the the the implications of a low blood sugar, for example? Were you, like, guarding against that? Were you guarding against highs? Were you looking like, what what were outcomes supposed to be?
Okay. So we seem to pick up the honeymoon phase pretty quick, and then we didn't seem I kinda laugh at this now. We didn't seem to leave the honeymoon stage for almost two years. And there's a reason for that. I don't think we were in honeymoon, but we saw a lot of lows.
In the very beginning, Cooper like, I remember our oldest son had one of those water slides in the backyard for a birthday party. And I remember Cooper did not have insulin, so nothing on board. We weren't on a pump, but MDI. Nothing on board except for a little bit of Lantus in the background. And by the end of the party, he had drank an entire I guess it's a half gallon container of orange juice, multiple juice like, we just could never keep him above a low.
It was extremely difficult. And so management from that onset for the next two years was a nightmare. I just remember talking to a lot of other type one families. Ironically, Cooper in his elementary school, he was one of five. We have a lot of diabetics, and there's only about 500 students in the building.
So people used to always say, I don't know what's in the water on this side of the district, but we have a lot of type ones and a school nurse who was amazing and helped kinda troubleshoot through it all. But he didn't seem to be like anybody else that we had met. But then you chalk it up to, well, everybody's different. Right? Some things work for some type one diabetics and other things, you know, work for other type one.
So we kind of went with that. But it took us a while to really get in a groove, and that kind of led us to where we are today. And I will say for the first time in about five years, we are finally where a lot of people get after a year.
Oh, what do you think happened? What do you think slowed that process down? So, partially, I'm gonna guess honeymoon, low blood sugar is hard to be aggressive, probably hard to even feel certain about anything. Is that fair?
Yes.
Okay.
So what we see with Cooper in celiac, and it's not always the case, if he is gluten, his digestive system turns into what many would see, with a stomach bug. So when a type one diabetic gets a stomach bug or anybody for for that matter, your body stops absorbing. And so that's why, you know, I'd read all these things about, oh my gosh. We ended up needing a lot of extra help. We couldn't keep our, you know, child, our type one diabetic above a certain number.
We saw that a lot. Mhmm. We were continuing to get vomiting because we were told that would subside. So this is before a celiac diagnosis. We were finger poking, I bet, 30 to 35 times a day.
Because? His blood sugars were crazy. You would finger poke seconds apart. He would be 108. Then you'd finger poke, he'd be two twenty five.
Three seconds later, finger poke, one fifty. And our school nurse looked at us like, I have no idea what's going on. Yeah. And we didn't either.
Right. Right.
And so anytime we would see a drop in a blood sugar, I'd have to send them to the nurse to say, you need a finger probe because I don't the CGM would try so we used to think the CGM was not very good, and that is not accurate at all. It didn't know what to do. It would oftentimes just lose an arrow and just pick a number and stay there because the numbers were fluctuating at such rapid paces, it could not keep up. And so where now, we use the CGM to really get a idea of what, you know, his blood sugar is in somewhat of a timely fashion. I know it's delayed, so it was a finger poke, but it just wasn't close enough.
We we'd have to just finger poke all the time to reassure, and we just couldn't get an answer. We were constantly contacting our endocrinologists at the time and, you know, in the portal ratings. Like, we don't know what's going on. Every three months, I would sit in there, you know, telling them, we cannot control his blood sugars. And, well, it's just gonna take a little bit.
You know? It's it's gonna take some time until you get used to understand understanding his body and, you know, his needs. And we would get somewhere, and then it would happen again. And we could not figure out what is going on. Right?
Like, are we hitting a muscle when we inject his insulin? You know, there was just we were constantly troubleshooting. If you go back to the Juice Box podcast around the years of 2022, 2023, probably beginning of twenty twenty four, I I bet I'm on there four times a day.
Yeah. It's gonna
be Yeah. Constantly kept asking question after question to try to figure out, like, what is going on? And, honestly, it was it was, you know, one of your viewers, one of your listeners who responded, are you sure this is not celiac? And I said, well, I asked. And they said, well, we tested him a diagnosis.
So we won't retest him for a year. And I said, I understand that, but we're we're really struggling with managing his numbers, and they refused to test him. And so I ended up going elsewhere to a different facility who tested him immediately. And
Said, hey. Got celiac. Yeah.
Yep. Yep. But not all not all celiacs experience that. We have a couple friends whose kiddos are type one and celiac, and it doesn't affect their blood sugars at all. So I don't know what makes that different for him.
I am finding that it's not very common, but
it's it's when completely you shared it on the group, somebody else was like, that sounds like what happens to me or something like that. Yeah.
Correct. Yeah.
It's awesome.
And that probably took almost a year. I just kept rephrasing because I'm like, oh, like, yeah. I understand. Like, yes. Know, because it's the constant, is he getting insulin?
Did you hit a muscle? All of those things. Yes. And they definitely play a role in all of it. But then something would happen again or it would just not really work out for us.
And so then I thought, okay. I'm gonna ask it this way. Okay. I'm gonna tell them I've done this. A lot of those posts at the end were, yes.
We've tried this. We've changed cannulas. We you know, we've done all of these things and we're still seeing it. And then finally, somebody saw it and said, are you sure? So we ended up switching endocrinologist.
They give him a blood test, which is super easy now. You don't even necessarily have to go in for the biopsy anymore.
Really?
Especially if you're you're committed to cutting out gluten. And we also had type one. And so the idea that three of them like to run together, celiac type one and possibly his thyroid down the road, You know, the GI was quite confident. We don't need a biopsy unless, you know, you're having continued issues. And so we're at a birthday party.
I will never forget this. It's a Saturday. We sit down. We did all the play you know, play for an hour and then come back and eat, and they put a slice of pizza in front of him, and my phone rings. And it's the nurse practitioner from the office, and she says, you're right.
He has celiac, And he's smiling. Right? It's like one of those surreal moments. He's smiling. He's getting ready to shove this pizza in his mouth, and I'm thinking, do I rip it out of his hands, or I just let let this be the last hurrah?
Like, you know, enjoy that pizza because it's about to change. Looking back, I should've ripped it from his hands because it caused so much problem for us, and it took almost another year to be so strict with gluten to make sure there was no cross contamination that it almost took his body a good year to really Bounce. Calm down.
Yeah. Talk about that a little bit. Like, it's not that easy just to, like, wipe that from your house, right, or from your I I mean, even your style of eating or preparing food or anything like that.
Well, and what's what most people don't realize and we did not as well, it's everywhere. We had to change shampoos and soaps, laundry detergents, sunscreens. It's not just what you ingest. It's everywhere. And we have found out that him touching it and then eating something or getting his fingers near his mouth can affect him.
And the further we've been away from gluten, the more severe his symptoms are if he is gluten. Okay. Now if he's full blown gluten, I mean, it's it's a panic attack. He really freaks out because it causes such illness, vomiting, diarrhea, stomach cramping. I mean, he he almost pants like a dog when he's when he realizes, I think I was gluten.
His numbers start to go crazy. His body stops digesting. So then we start real we we have so many profiles because of celiac. I honestly think the celiac diagnosis for us was worse than the type one diagnosis.
I have heard people say that before.
Yeah. A 100%. And especially because it affects his blood sugars. So now they're working together against us, Right? Instead of just saying, hey.
We're gonna be gluten free and make sure that our digestive tract is okay. Our blood sugars are affected. So Cooper has three profiles. We have a profile and and I do think it is a little bit of him. I don't wanna blame everything on celiac.
I do think his body is just unusual. His insulin needs on a day to day basis drastically change. There were days where he needed forty units of insulin plus and other days where we barely gave him five units in a day. And these these variations are all in the same week. So we get up in the morning, and we eat breakfast, and that rise in a blood sugar tells us the day we're about to have.
And that's why we have had to have multiple profiles. I we've probably been to five endocrinologists. We're we're now settled in, and we're good. But of those five endocrinologists, every single one of us or every single one of them wanted us to delete all of his profiles. No.
You should have, like, a sick profile and then, like, his daily needs. I said, okay. We would erase them, and then guess what? Be right back to multiple profiles. So just this week alone, we've switched between those three profiles probably five times.
Do you have names for them?
Yes. We do. Yeah.
What are they?
We have one called weekend because it used to seem like the weekend would bring on less insulin. We have one called puberty because we thought we were seeing, like, growth spurts, but now we're realizing maybe that's not the case. And then we have one called some, and some is, like, hardly any insulin. I finally had an endocrinologist tell us or or test him in the spring. He was never tested to see if his pancreas was producing any insulin at all.
And so I finally had them test this past spring just to make sure that we weren't dealing with some, like, you know, overactive pancreas down the road. And he has, what, point zero one, which is an indication that nothing's
No production.
Thing's being made. Yeah. You made me So we definitely know it's not that.
Yeah. You made me Google gluten free shampoo because that is a thing I'd never knew existed, but there it is. How about that?
Wow. Wow.
And so you're saying to the so the better you are at keeping him away from it, the worse it is if he should encounter it.
Yes. And I think his body learned to deal with it. I mean, obviously, when he was overly glutened, it would cause vomiting. We thought he had a stomach bug one year about six times, and I came to realize, I think we were gluten. Because the it's very similar.
A stomachache, vomiting, diarrhea, you don't wanna eat. Right? It comes across very similar to a stomach bug, but it wasn't. Looking back, it was just his body saying, yeah. We're not we're not gonna do this.
So now if he is gluten, it's it's it's pretty severe.
Yeah. So sorry. It's just it is it sounds horrible. I don't really know nothing to say.
But Yeah. Yeah. It makes you appreciate diabetes differently. So Well, it
must I mean, you alluded to it earlier too. You said you you guys you didn't use these words, but you you've had enough experience already that your perspective is different about about life and, and what the big deal is versus not a big deal. In your, in your note here, you said cannulas. That was one of the things you wanted to talk about. Why why is that one of the things you'd like to talk about?
Well, when Cooper's diagnosed, it took us a while to get to a pump because they really want you where we were to be at about ten units of insulin in a day, and we weren't getting there. Now looking back most likely because of celiac. And so it took us a good year till we got there. And at that point, the only Control IQ that was out there was Tandem. That was it.
So we didn't really have a choice to go tubeless. We are still with Tandem today. I honestly think it was a blessing in disguise because of being able to have multiple profiles. We have had several ENDOs tell us that, sadly, Omnipod probably wouldn't work for us because of the algorithm it uses, and that it's learning the body. And because Cooper's needs change so drastically, we kind of have to manipulate that.
And we have had to change profile settings time and time again, and we just it probably just wouldn't work very well. But I will say Tandem has one of the best customer services. There are so many people on the other end of the phone who were really trying to figure out what is going to work best for Cooper. We ended up with a TruSteel because of having multiple issues with bent cannulas early on. I don't know how much the cannula really was the issue because I think gluten was really our problem early on.
But we have now since oh, sugar. I can't think of the one that we have right now. We're oh, it's a 45 degree angle. 90 degree angles or anywhere near that doesn't work for him.
Okay.
He's too thin. I mean, he a lot of our celiac friends or friends that we know that have gluten issues and stuff had very similar body makeups when they were young. Like, he's real tall. He's real thin. I bet he has, like, 1% body fat, maybe.
And so, like, we don't have any squish at all. I do think with the 90 degree true steel, we were just hitting muscle too much. And so last summer, Tandem said, let's try a different let's go in at a different angle, and that has been amazing. So when he was diagnosed, like everybody else, his a one c was, like, 13.2. We had then, with the help of the pancreas coming back into play, dropped down to 6.8 and quickly ended up back at 8.4.
So we had made that initial fall and made an abrupt turn to go back because we think celiac was kind of coming into play. It took us five years to get back to the sixes. We we would get to, like, 7.3, 7.4, 7.2, and but we just were still having such issues controlling his numbers, realizing, looking back, we probably weren't as strict gluten free as we could have been. So in changing that and in changing the cannula, we finally got back to a six point eight, which is the lowest a one c he has had since the initial diagnosis in the fall into 6.8. And so we've been cheering for that because it's just taken the variables that it has taken us to get to where we are is not typical in most type one journeys with having so many friends.
I mean, many of them settled in within a year. Everybody's different. Totally get it. But five years is quite a long time for us to sort of figure out. And I was just super grateful that we had multiple cannulas to choose from and to try.
And, you know, the tubing hasn't been that bad. He loves to be able to remove it and get two hours, you know, playing a sport and things like that. But I would say within the last year, we've really seen a change in, his management. Being able to play a sport and not have to panic, he's going to go low, being able to control the fluctuation of his blood sugars, it it's honestly I feel like we've finally made it to the other side.
Wow. That's such a long journey. There's so well, you know, it's so much to figure out and so many possible I don't know what to call them. Like, right, like, like, ghosts out there that you're like, oh, it must be this. It must be that.
It must be and then to figure out, like, oh, probably wasn't that. It might have been this. It could have been more gluten than it. I mean, it's just how did you keep it all straight? Would did you have, like, a one of those big whiteboards, like, out of a, like, a whodunit movie where you, like, stringing yarn across the room?
Or how do you keep track of all I'm serious. How do you keep track of all that? Or do you just eventually just keep knocking things off the list until there's only left what's left?
That. And finding the people who were willing to hear it. So at the first endocrinologist where we first started after diagnosis, I remember sitting in a room talking to one of the nurses. You know? Like, of course, they check-in.
How's it going? How's everything going? And I just lost it. Just started crying because I was working on zero sleep. We could not figure him out.
Nothing made any sense. Eat a lot of protein. We're doing that. You know? Mhmm.
Figuring out the digestion and how things are digested. None of it made any sense. My husband's a math major from an Ivy League school. Like, we're calculating stuff. We're and we just could not figure him out.
We had lots of friends who were just up in arms. You know? I have no idea what's going on. And I remember the nurse telling me, you know what? I think you just need to move on.
I think I think you need to stop looking at his CGM. Well, we couldn't. It this fluctuation in blood sugars for us is what landed him into a seizure.
But your nurse told you just to give up?
Yeah. Awesome. That's why that's why we left. You we deserved a little bit better. Right?
Like, we're we don't look like crazy maniacs. We're just trying to figure out, you know, how how is what you're telling us not working? Like, how is none of this working?
Hi.
There's None of it made any sense.
There's a dog latched onto my right arm. He chews sometimes, but sometimes he just holds on. It hurts worse some days than others, but what do you think I should do? Is it have you tried looking to the left? I just Yeah.
Yeah. Just don't worry about it. Have you tried not worrying about it? Oh.
“Have you tried not worrying about it?”48:12
And after the seizure, we couldn't. I mean, that really
Yeah.
That really set me back for months. And so, like, how do you keep going? I just I have so much experience with I've had Lyme disease, multiple co infections, and doctors who have said, there's nothing wrong with you, and I knew there was something going on. Mhmm. You just have to find yourself in in the right path with the right people.
So ironically, Cooper's elementary principal's son was a type one diabetic, diagnosed at 13. He went off, played college football. You know, he's doing all these things. He's now an ambassador for Tandem. He played professional football.
We we honestly ended up in the right village with the right support group. And I would never forget his wife saying, if you ever find that you're not getting answers, let me know. I've got somebody who's amazing. And so she pointed us in the direction of this, pediatric nurse practitioner who gave me her cell phone number. We checked in, and she said, here's my cell phone.
A cell phone number that changed everything49:08
I want you to call me when it happens. That changed everything.
Oh, really?
I called her and said, he's vomiting. This is happening. And, you know, should we go to the ER? We can't keep his number up. And that's when I said, I really think we need to test him for celiac again, and she agreed.
And we we worked with her, you know, for about a year and a half. Their practice ended up not seeing type ones in the end, and then we got shuffled somewhere else. And we're still at a really great place. This this practice is fantastic as well. But, you know, when you're just not getting what you if something doesn't seem right, you just have to keep asking questions.
You just have to keep searching, and maybe one day you're gonna run into somebody like the person who commented on my post. Are you sure, you know, he's not celiac? I wouldn't have once they told me, no. We're not gonna retest him, I would
have forgotten about again. Yeah. I try to I try to get that across to to doctors all the time that the thing you say, you better be right about because that's gonna become, like, doctrine in my thinking. I'm I'm I'm either gonna think this is the most important thing in the world because you told me it was. Or if you tell me it's not important, then when I'm trying to figure out a bigger problem, I'm never gonna I'm never gonna calculate that again.
That's done. We figured out that's a no. You said no to that. It's just Yeah. Yeah.
That could happen to you so easily.
The appointment she cried the whole way home from50:24
Oh my gosh. Remember leaving that appointment when that nurse told me I just needed to move on, and those were her exact words. And I cried the whole way home, and I remember Cooper not knowing it. You know? Like, you're trying to, like, keep it together because I don't want him to ever feel like, oh, I've created this burden in our family.
We're very open as a family. We talk about everything, and we're going to make mistakes. It's going to happen, but we're, you know, we're doing our best. And I remember crying the whole way home and just kind of having a conversation with him. We got home.
I wiped all my tears away, and that honestly lit something in me that I was like, I'm done. I'm going somewhere that they're actually going to listen to what's, you know, to what's going on. I didn't wanna put him in a situation. That seizure changed me, and I felt like it could have been prevented if some of my concerns would have been addressed early on. Mhmm.
Looking back, he may have needed less insulin, but that was only because he wasn't absorbing. Like, he was gaining some weight, but not really at levels or rates that other kids who are die you know, I see those before and after pictures, and they're, like, drastically different for a lot of kids. Not him. He kept that slender look. He was still vomiting.
We still had so many other symptoms that weren't solved by just insulin.
Okay.
So I do think that that you know, I just I just kept saying something's not something's not right. And I'm not one to just sit back and say, oh, yeah. I guess that's it. Like, we've tried everything. And I'm still troubleshooting to try to figure out what works best for him.
Why not? And he feels better than he's ever felt. He's happier. You can see it. You know?
So Yeah. That's nice. It's good it worked out. And I am you know, you said, like, how do you keep tabs of this stuff? I blogged in the big beginning just like you did even when social media was thick, and I was constantly posting on social media and constantly, like, asking questions and just, like, arranging everything, organizing my thoughts to see if maybe something just stood out Mhmm.
That we can maybe get a better answer. And I am so glad that early on somebody said, you need to join the Juice Box podcast because, honestly, Scott, I I'm serious. Majority of where we ended up and where we headed came from, the members of the group.
Oh, that's awesome. It's such a wonderful group of people. Yeah. I'm very happy to be associated with it in in in in such a you know, in a way that would make you come on here and share, you know, what what's going on. I don't know how to describe how that thing morphed into what it is now, but I it doesn't surprise me at all that you found your answer there.
I mean, obviously, you had to be, you know, steadfast about it, and you you it's not it's not you don't sometimes you just don't type in question and get, like, you know, life changing answer. Right. Right. It's a bit of a bit of a process sometimes, especially when there's just so many variables like like there is with this situation. Oh my gosh.
Well, you said a couple of times that I see having your son have a seizure was, like, life altering. Do you mind talking a little bit about it? Like, he had a a low blood sugar, obviously, created a seizure. Was he sleeping? Was he awake?
How did it happen?
The night of the seizure53:36
So because we probably were having those crazy blood sugar swings early on before we got that celiac diagnosis, instead of giving a long acting once a day and before bed, like a lot of times, many diabetics early on will do, we ended up split dosing. We would give a little bit in the morning and then a little bit at dinnertime. So we had given our long acting at 05:00, half the dose like we normally did. And so we always knew come 09:00, if we were going to see, when it peaks, if we were going to see a fall blood sugars, it it would show. So 09:00 comes around.
I remember him being, like, one sixty and abruptly just turns. We hadn't given any short acting. It was 100% long acting that was left in the body. And I think it was around four units, I wanna say, but I don't quote me on that. But we had been to a graduation party, and they had a mac and cheese food truck.
And Cooper had eaten a giant dish of mac and cheese. And I think what happened is for us, this is not always the case because I know early on, the the odds of you, you know, having something like this, it can happen. It's it's common because you're trying to figure it out. And his number turns, and he's dropping, you know, and we're we're pumping him full of stuff because we know that he's very hard to turn low blood sugars.
Okay.
And it's not stopping. And he probably drank. We ended up we we kind of ditched juices early on because he was needing so much of it, and it was honestly making his stomach worse. So we would we switched to Coke pretty quick because Coke is very easy on the stomach, and he could handle a lot of it. And so that's what we were giving that night, and it just it just wasn't turning.
We're finger poking, and now my husband and I are starting to panic. Right? We're seeing 70, double arrow down, sixty, fifty, forty. We're finger poking at 34, 36, 35, 34. I just remember finger poking over and over and over.
And when it when we realized we were in trouble before we had finger poked in those thirties, He started, like, twitching. His shoulder started, like, lifting, one on one side, one on the other side. I was like, what? What are you doing? He's like, what what do you mean?
What am I doing? And I said, why why is your body twitching? And this is before I truly knew that we were in trouble. And then pretty quickly, he went into a full blown seizure. We dialed 911.
My husband had worked at a camp with a lot of campers who had disabilities and seizures, so he had dealt with seizures in the past. Thank goodness. Because, you know, you think you're ready. I'm ready. I have my glucagon.
I'm ready to rock. Right? I've got Baqsimi at the time, like nasal spray and everything, and I I panicked. I I was horrible in this situation. And, hey, maybe give yourself a little bit of grace.
I got it. But I yeah. This is why I'm not in the medical field. And we dialed 911, and the lady on the other end was amazing. And we said type one diabetic.
Apparently, he's got too much long acting on board, and so she just went through the whole thing. But, you know, Scott, the part that really affected me the most is he stopped breathing. And that's and he's turning blue. He's turning gray. She knew exactly what was going to happen, though, because she'd asked those questions that led into it.
Is he breathing? And I said, no. Actually, I don't think he is breathing. Is he turning blue? Yes.
He's turning blue. Okay. I want you to turn him on his side because, like a lot of seizures for fear of vomiting and stuff, they wanna make sure that, you know, we keep his airway clear. And she must have had a timer or something set that happens. I'm still not very familiar with seizures.
But at one point, she said, okay. In a few more seconds, he should start gasping for breath. And I thought, what? So and I'm, you know, I'm full blown. Like, should we be giving CPR?
Like, what are we doing here? And almost on the dot, she said, okay. Is he breathing? I said, yes. He just took a huge gasp of breath.
And she said, okay. That's good. But now we need to keep him on that side, you know, in case we have vomiting and things like that. And the paramedics who showed up were fantastic. He did have vomiting.
Luckily, he was alert and on the stretcher. But, you know, after giving Vaximi, which we did do, kinda forgot that part, but we did do the nasal spray. He never he ended up in the hospital. We stayed just that night. He never got above one fifty on a blood sugar.
Because a lot of times, they'll say, like, oh, if you over you know, if you're using the glucagon and the liver's releasing all of its its glucose, you could see some sticky highs. We never got that. He never went above 200, I don't think, for that, you know, that entire, next few days. But, yeah, it just and I think I think it really affected me too is because we were searching for answers we weren't getting.
Mhmm.
And then on top of this happens. And I think part of me thought, could I have prevented this?
Okay.
You know? If somebody would have just maybe listened to our story a little bit closer, maybe we wouldn't be in this situation, and we haven't since then. But, yeah, it just was it was the first time something severe happened, and that's when I realized, okay. You know, like, we we need to really and then I was half afraid to use insulin after that for multiple months. And I kept him below 200, but I didn't keep him where we should keep him.
Yeah. Because you get you just get aggressively scared of it happening again. No. I know. How about for him?
Did it stick to him?
No. He doesn't remember at all. He now talks about it a little bit like, oh, yeah. Had a seizure, but I don't think and I have a couple pictures from from that day. He ended up kind of having aggressive tactics from when he became conscious again from the seizure at the hospital until about 6AM.
At about 6AM because they had to hold him down and kinda, like, tie him down to the bed. He was aggressive for a long time, and that was hard to see as well. And about 6AM, he just sat up and was like, what are we doing? So I'm not so sure. And he was young.
He would have been seven, about to turn eight. You know, we were only a year in, still MDI. I wish, though I kind of wish somebody would have said, are we sure we can't do a pump now? I I think we would have been better off. I am honestly a little terrified to ever go back to long acting because of his variations in, you know, the insulin that he needs in a day because of celiac.
What the celiac diagnosis explained1:00:19
And so I kind of wish somebody would have said, you know what? If we because I could have turned the pump off and curbed that fall, but I can't take back long acting. Yeah. It's there. And it's there pretty aggressive if it's way too much.
In that situation, around the birthday party, it's it's a year into his diagnosis, you said?
When he got the celiac diagnosis?
No. The seizure.
Oh oh, from the graduation party. Not not quite. That would have
been Okay.
May. He's diagnosed July. So, yeah, pretty much.
Pretty So you don't really know what you're doing with gluten yet at that point. So he's Right. Like, so there's the macaroni that's got gluten in it. Right?
Yep.
And then the cheese slows down his digestion, and probably probably everything probably gets, like, wonky right there. Like, with that all that noodle, like, I don't know. I listen. I don't know if I'd be scared of the shooting. I take your point about the long acting insulin and that fear that, like, once it's in, it's in, you can't do anything about it.
But I don't know. I think you'd be fine.
The only the only reason it would be a fear, not long acting itself. I think in in a normal situation, I think it's great. I do also like to see when type one dive actually, like, you know what? I'm just I don't I don't I'm not feeling the pump right now. I wanna take a break.
I think it's a great option Or athletes. The principal's son, you know, he he has the opportunity to use it or giving multi daily injections while he's playing football and stuff so he doesn't have to worry about a pump. So, yeah, there's tons of benefit. The only problem I have with it for Cooper as a celiac, if he is gluten and his body stops absorbing, it doesn't matter what we give him. It is very difficult to turn that low.
Can't
do where I have you know, where I'm just a little, like, I just don't feel like I have much control over it.
Sure. So I don't dis I mean, I understand where your fear comes from. Look. My kids had a seizure. I know what you're talking about.
So, yeah. Jeez. Well, I appreciate you sharing that. That's couldn't have been easy to to relive, to to share here. But I think it's important to, you know, I just think it's important for people to hear those stories once in a while.
It's not it's not all just like, oh, just do this and it'll be fine. Like, sometimes it's not fine. You you know? And and you you should hear about that once in a while. And you hit them with a backstory.
It didn't it didn't slow anything down. Or it might have, but not not to the degree you needed it.
Yeah. Yeah. Yeah. And I think everything you know, to put things into perspective, gosh, I think of us as just a family and how much stronger we are through all of this, how gracious our older child has been as we, like, worked through it. You know?
It's this is life. You know? And, like, there's going to be something every which way you turn, And how you come out on the other side is a 100% it determines, you know, the type what you do with it, I should say. And so I think this is I think Cooper saw us as they didn't just say, okay, when they were met with, you know, you just need to move on. So I'm hoping that it shows how important it is as he is now, you know, starting to jump into puberty, how important it is to take care of your body, to you know, for all the preventative measures, to take things like celiac seriously.
Right. You know?
Push back when people tell you don't worry about it, and, you know, there's something to be concerned about. Yeah. Yeah.
Yeah. Yeah. For sure. Yeah. So hopefully, maybe somebody will hear this and be like, woah.
I think we're seeing a little bit of this. You know? Or, like I said, it was that comment that really set us in this direction because I probably I've just been told multiple times, like, nah. It's not that. We don't need to we and I'm thinking all I'm asking is a blood test.
Just just run the blood test. Right. Like, I'll pay for it out of pocket. Shoot. That's cheap in comparison to most of this.
So I'm just glad that we ended up in the in the hands of a nurse practitioner who was like, call me. I I wanna see what's going on. And I kind of wish that would have happened when our youngest was having such bad reflux. And, you know, I wish somebody would have been like, let me let me take a better look at this. Because not everything is as it's supposed to be.
So
Yeah. It all I was gonna say, it it also gives you good perspective for, like, look how many times you had you had different issues before one person stood up and said, I'll go an extra mile here to make sure your kid doesn't feel this way. That's Yeah. You you know? And you might bump into six more problems moving forward before you meet another person who's willing to do that again.
Right. And, you to
keep in mind.
Once once we realized how bad celiac was and then obviously putting it on top of type one. But then, like, my whole I was a teacher. My whole perspective of food in the classroom changed. And just not that we have to be, like, super strict, but the fact that so many situations in life end up with, I just don't wanna listen to you at this point. Right?
Like, I don't wanna like, I feel like if we just listen to each other a little bit more and really cared about the next person or the community, like, gosh, the difference we could make.
Yeah.
And just getting that person to listen and hear your story is half the battle sometimes. So
Well, good luck. I mean, yeah, it's it's hard to it's hard for people not to jump in with their own bias. I don't even that's, like, a a catchy word to use. But, like, you know, you say, you know, this is the thing that happened to me, and somebody who has nothing to do with it and has no firsthand knowledge of it will just apply the first thing that pops into their head to it. Like, I think you're wrong about that.
Based on based on what? I don't know. It's just what I think. Oh, okay. You know, like, that it happens all the time.
I have a a a an acquaintance right now who, started using a GLP medication and, has a huge impact on they they had real, like, serious gut problems, you know, a lot of, like, running to the bathroom, like, a lot of stomach problems. Right? The stomach problems made them anxious because they were worried about where to go to the bathroom. They had some psoriasis. They a couple of different things.
Start taking a GLP, the whole thing just goes away. Just it's just all so much better now. And this person goes to the doctor to say, like, look. You know, I took a GLP without asking you. Here's what happened for me.
I'd like to get a prescription for it, because I don't wanna go back. And the doctor said they went to the gastro first, the doctor said, I I'm I'm not comfortable with this. You you'll go talk to your regular doctor. Just like that. Like, saw all of the benefits that happened and said, well, how do we know it was actually the GLP?
And she's like, well, because I'm telling you, shot the GLP on a Monday, and the following week, all the problems were gone. And I've been taking it since then, and I haven't had any of the problems. And prior to that, nothing's worked over the last, I don't know, eight years. Yeah. And the doctor said, well, you know what I prefer if we got a baseline.
Let's take you off the GLP. Let the symptoms return, then we'll give you a colonoscopy. Then and and that person came to me and said, what do you think of that? I said, that's insane. I would not do that.
I was like, what? They're gonna put you back in pain, back in peril. I I to prove something that we all already know is happening anyway. There's by the way, the doctor also knows but wants to cover their own ass for.
Yeah. I'm like, unbelievable. That was I was sort of glad that this GI after we got the blood results and here's the thing. The test that we took is basically, the end result is anything greater than 20 should be eye opening that your body's not receptive to gluten. Okay.
Right? So a friend of ours that lives somewhat close by that we met through another friend, and her, kiddo is celiac as well. His number was, like, in the hundreds, like, astronomical. Cooper's at the time was 47. That's not that much greater than 20.
And I didn't even wait because it was gonna be, like, six weeks. Make sure you're stuffing him full of gluten. Well, because it was affecting his blood sugars, I was like, what is the purpose of that? Yeah. I'm just gonna cut it.
We're gonna go from what I thought was super strict. And then when we get into this, see the GI, I'm gonna tell him, yep. It worked, you know, or it didn't. And we weren't as strict as we are right now, but we were definitely as strict as what we thought we needed to be. And we by the time we got in for the appointment, he said, did you cut gluten?
I said, absolutely, we did. I said it was affecting his blood sugars, and I wasn't about to put us in another risky situation. And he said, how's it going? I said, 50% of the problem is solved right then and there. So I said, within a week, everything calmed down.
And then we had some more troubleshooting. Hey. Maybe this isn't the best cannula. So we did have a bunch working against us. But sometimes common sense is just, hey.
I mean, what's the GI gonna tell us now in your acquaintance situation? You're kind of relying on a script, so it's definitely different. But for us, it was easy. We're just gonna cut it. You know?
And then if it works, if it works, it's great. So
I'm with you.
But yeah. Yeah. It it's hard. I I you know, I'm a teacher at heart, and so I'm always like, sure. What can I do to help?
I'm always willing to try something. I just realized through this process that's not always the case. And sometimes it's because they have too much going on in their own. Got it. I totally got it.
But I'm always just the type of person to be like, yeah. That's interesting. I I hear what you're saying. That does not make any sense. And I don't think we got that at all, not without us pushing.
So
I think it's sad, but I think it's common. And
Yeah. Yeah. Right.
And, really, it just it I don't you can say what a I heard you say just a second ago, like, well, maybe they don't have enough time to put into it or whatever. But I I it's starting to feel like a a convenient excuse, you know, that when somebody doesn't have a good health outcome, you go, well, you know, it's the health care system, and I only have fifteen minutes with them. Like, once he it's it's just become the thing people say.
I used to write a sentence on my whiteboard when I was teaching, and it would be find the grammatical errors, make the corrections, and rewrite the sentence. And I they were always fun facts from, like, history and past experiences, etcetera. And I'll never forget one of them said, doctors used to pay you when you got sick or something along the lines of that. You know? Like, hey.
I'm your doctor. And if you're not feeling great, then, you know, that's on me. And, boy, if that's accurate, has that changed, obviously? But
We don't do that anymore?
Yeah. Yeah.
I you know, this person I was talking about had to go to the you know, eventually go to a GP and say, look. This is the thing I've been doing. And they were scared to go tell the doctor. And I said, listen. They work for you.
You're hiring them. Like, I was like, what are you worried about? He said, well, I don't wanna get in trouble. I'm like, get in trouble from who? I'm like, you're an adult.
Like, there's no trouble. You didn't do anything wrong. You did you made a decision. You took care of it on your own. And now you're saying, alright.
You are not there to ask permission1:11:27
Well, I I think I found an answer. Let's all get in bed together here and make this work for me. I I I it was interesting that there was there was an adult who thought, oh, I can't go to the doctor and tell them what I've been doing. What if they're mad at me? I was like, what if they're mad at you?
I couldn't possibly care less what they think. That's not the point of all this. It's Yeah. But that's it. It was an overwhelming feeling for them.
Just you know? I I don't I don't wanna get in trouble. What if this hap like, what do you think is gonna happen? I don't know, but I don't want anything bad to happen. I'm like, what just I I I don't know what to say.
I said if the doctor has a bad response, you know, leave. I also said you're not there to ask for permission. You're not there to apologize. You haven't done anything wrong. This is you're an adult.
You don't need anybody else's, you know, you know, advice. You're here telling them what you need. And then they went and did that, and that worked just fine. All that Yeah. All that anxiety around it was completely unnecessary because they found a reasonable doctor who said, oh, is that what's happening for you?
That sounds much better. Let's do what Yeah. Let's do better for you. You know? But just as easily could have bumped into one who was like, no.
You broke the rules. Yep.
So Well and, I mean, think about the rule breaking. Oh my gosh. If I how many endocrinologists or nurse practitioners within the office would be handing out personal cell phones? You know? And I obviously didn't wanna abuse it, but the fact that I could say in real time, okay.
It's happening. And she was asking questions, we're troubleshooting. And, she said, yeah. Let's come in this week for, you know, for a blood test. And I thought that's that's all it took is that we're giving him many doses of glucagon so he doesn't go too low to keep him from possibly having another seizure, when a blood test could simply rule in or rule out, you know, what's going on.
“Maybe you look at the CGM too much”1:13:15
And he had been tested for many other she was like, let's just run everything I can think of. All autoimmune. But celiac was the only one that came up
Pop.
As a heightened.
Listen. If your rules are keeping people in a poorer health situation, you're gonna have to reevaluate the rules a little bit. You know? So Yeah. And I I I don't I I mean, I don't know.
But it just it I I don't have it in me to be frustrated today, I guess. But this is easily could've got me ranting and raving on another day. Oh, I am super happy to hear that your son's doing well. I I just it is really fantastic. It's absolutely heartwarming to see somebody put five years worth of effort into getting there because I think a lot of people give up along the way or take that doc.
That doc that nurse's advice, maybe you just gotta stop looking. Whatever that that sentence was. Terrible sense. Yeah. Whatever that sentence was, a lot of people will use that as an excuse to stop or an off ramp to give them to cut themselves a break.
And that does not change the fact that the child or whoever you're trying to help in that situation is living in a dire situation and need needlessly.
Yeah. Yeah. And it was sort of like yeah. I mean, I look at that. You know, maybe you're looking at the CGM too much, and I thought, oh my gosh.
That CGM has kept us safe. I can't tell you how many times. Thank goodness for a CGM. I don't I don't know how we would have done this prior.
Not as well.
Yeah. And so I'm thinking the one thing that is keeping us safe and the judgment came from that, I I just I yeah. I I guess I I kept a lot in. I probably should've said a lot more at the time. And it's funny because I think about if I would've talked to you with the in the midst of all of this versus now.
Like, I've moved on, and I I try to share as much of our story as I can so that maybe, like, somebody helped us, we may help somebody else down the road, especially when you're in a situation where you're not feeling help. And if we would have been in a much smaller town or city, a rural area where we used to live, we would have been a little bit more limited on on, you know, who was trying to help us. I'm just glad we had multiple opportunities, you know, with where we live now. So
Yeah. No. I am too. I, I'm gonna ask you if there's anything we didn't cover or anything I didn't ask you before we stop, but I feel like you did a really good job of explaining this.
Five years of not letting it go1:15:40
Oh, thanks. Yeah. When you live it and you experience it and it's been everything. It's been all me for five years. It's so easy to just retell now, so I appreciate the opportunity.
Well, no. And I wanted to tell you too, I guess, I'll end on this. Yours is a name that I recognize from the past, but it was weird for me to see you pop up now. And I I appreciate that because you were saying a few years ago, you if you look back, you would have seen me all over the board. Like, I recognize your name.
Yeah. Yeah. I bet you do.
Yeah. Yeah. And so and to see you, like, years later pop onto the podcast, I was like, oh, this will be interesting. Like, because, yeah, I would have like, it wouldn't have wouldn't have surprised me if a couple of years ago you would have reached out, but you didn't reach out in the middle of it. You reached out after you kinda came through the clouds a little bit.
Well and I didn't know if it was us. We had been told so many talk times, like, you know, we think part of this problem is basically you and your husband as caregivers, which I knew wasn't true. And so with not having you know, as soon as you say, hey. I think I'm seeing this. You know, how long since your diagnosis?
Six months. Well, nobody's gonna believe you. Six months. Even though we had lived and breathed and did so much more with type one in six months than many other type one diabetic families did. I just didn't feel like I had the experience nor did we have an answer.
I do feel quite confident now that we have figured him out, at least for right now. And so I am on the other side of it. And I was just thinking before I I came on with you today that I don't know when the last time I posted was. It it could be many, many months or maybe more than a year now because I feel like we're in such a good safe place, but I look for people who have similar situations. You know, we seem to be getting a stomach bug a lot.
Immediately, I comment. Are we sure it's not celiac? Well, we were tested at diagnosis. I know, but it can come on at any point. At diagnosis, Cooper was fine.
His number was totally fine. He was not a celiac. Yeah. But that came to play pretty soon after his diagnosis, you know, looking back. So
It is nice of you to hang around and try to do that for somebody else. It was really awesome because somebody did it for you. Yeah. You know? Like, the that person who did that for you was probably probably in a very similar situation as you had been in and got through it and thought, I'm just gonna wait around and try to help another person.
So
Yeah. And it was a real simple comment. It wasn't, like, real long and drawn out. It was just like, this screams celiac, and I think he needs to be retested again. And for some reason, it hit.
It's funny. That comment and one other comment from the Facebook group and well, we were troubleshooting cannulas, and those ended up being our two big pieces in Cooper's story, celiac and cannulas. 100%. Yep. Oh oh, and I should say, actually, insulin that you know the results faster.
I do not think Cooper can do something like Humalog. He's been on Lyunjif and Fiosp now for two and a half, maybe almost three years. We need that because that helps us see quicker what kind of day he's going to have. So I should I should say that that's a big deal too. But that was changed pretty quickly, and we didn't really have much up against us when it came to that.
But the other comment was trying to figure out, like, is it his sight? Like, what is going on? And I think a lot of it all kind of, you know, came together and created issues for Cooper. But there was a gentleman on there who was an older gentleman who commented on one of my posts, and he said, you know what? Forget about it.
You're gonna you're gonna be changing his site every two days because we do change every two days for Cooper. You're he's gonna be doing this for the rest of his life. You can sit here and try to say, like, is the site good? If it's not great that you can't get his number down, change it and move on. And I was like, that's great advice.
Yeah. So that's what we do now. And my husband still sometimes wants to troubleshoot. You know? Like, is it?
Who cares? And there and he he flat out said, there's gonna be times you're gonna change it and realize, was it the site? Okay. Who cares? You know, like, buy extra so that you can move on.
Why are we wasting all this time trying to figure it out? Give him a fresh, clean, new site, and move on. And so we do that.
It's like wanting to hold your breath, jumping in the pool, sitting on the bottom, and then running out of air and going, I don't know what's wrong. Why can't I just hold my breath better? And then someone comes along and says, why don't you stand up? And, you know, you go, oh, that's a good idea. I'll just stop trying to hold my breath.
Perfect. Yeah. Now it it sometimes it takes, you know, an experience, but sometimes it just takes the wisdom of time for someone to say, I think you're I just think you're looking at the wrong thing there. I'm also listening to your story and wondering how many poor people over the years and the decades were told that they were brittle and maybe had celiac. You know?
You know, after looking up that definition, that was a hundred percent us. And I kept I kept saying, we have brittle diabetes. And, of course, endos don't ever wanna hear that because they're like, no. That just means poor management. Honestly, that's a term that's sort of graduated out since CGMs, and you can really follow numbers.
And I said, well, we're that. I mean, whatever that is, that's what we are.
It feels like it. But but then, yeah, then you look long enough, and you find the answer. And there it is. I I I listen. I, generally speaking, agree that I don't I think brittle means something's not working that you just don't know about.
If something or something's working against you that you're unaware of and the point that the CGM shines a pretty bright light on that is a valid point. But it doesn't mean anybody that people always get their answer or can figure it out. Like because look at you. Like, just like with your thing, everything's right in front of you. It takes a long time to put it together.
Mhmm. You know? And to to to, I guess, solve the puzzle and and then go have the have the nerve to push the button and say, okay. This is it. I think this is what we're supposed to do based on all these random things that I've seen.
So, anyway, it's a lot of effort on your part.
A 100%. And everything in my life with anything that's you know, where you're like, okay. Gotta figure out how we're going to fix this. It's always just been a process of elimination. Mhmm.
That's the easiest way to somehow get to an answer, and which is why I was really pushing for a blood test because I thought, man, we could figure out pretty quickly if this is our problem. Why wouldn't we do it? And so I do think that that's a big a big piece of it is you just keep trying. Something will click. It took us five years to get here.
Five years. Mhmm. That's a long time compared to what people said, oh, but, you know, a year in, and you're gonna be great, and we weren't. So it doesn't always work that way. You just have to keep trying different things, listening and troubleshooting.
Yeah. I'll tell you that if this happened to you today for the first time, I would tell you to open up a a chat in one of your favorite whatever your favorite large language model is and just say, I'm gonna talk in here about health. We're having a lot of odd problems happening. I'm trying to see if I keep coming back here and telling you more details if eventually we can figure something out. And I bet you if you went through your process and type I if you went to a chat GPT prompt right now and then
That's exactly what I was gonna say.
Yeah. And take and take and take everything you said to me today and just put them put it in order. Put in the first thing and said, have a child that's this old and has this going on. What do you think it could be? It might say, I don't know.
That's not enough enough, you know, information. Then come in and take the next piece that you figured out and drop it and say, well, now I figured this out. And then I wonder if it wouldn't take three or four pieces to put together for that thing to go, oh, your kids, got silly. Yeah.
Without a blood test. It would know. Yeah. For sure. Yeah.
I just it's interesting. I would be curious to wonder why, and I guess it's just because everybody's different, why some people with gluten who end up celiac have issues with blood sugar swings and why some people don't. Yeah. I I don't know why that is, and maybe they don't really know why. But we couldn't ignore it.
Without the blood sugar swings, he could very well still be eating gluten today. We might not have any idea why we can't get him
It could be
know, without stomach cramping and stuff. Yeah. Yeah. So the blood sugars really sped up the process even if that was over a two year span. But
Well, listen. I mean, I'm sincerely telling you. Like, I I'm I personally appreciate as another parent listening to somebody who did not give up because I persevered through some through some things that have happened to my kids where even my own family is like, will you leave this alone? And I'm like, no. I'm gonna figure this out.
Yeah. And then Mhmm. You know, we did. And, you know, there there's no thank you at the end, but, that's fine. And I Yeah.
But then you go then there's, like, a real sense of, like, oh, I saved like, there's a there was a thing happening to a person that's not happening to them anymore, and their life is now better because of it. And that that makes the time feel really, like, well spent to me.
So I've had a couple friends throughout this process say, you should have been a doctor because you have the piece that's missing in some offices is that you care. You see everything as we're gonna figure this out. I don't know that I would have been smart enough. But Well You know, that's a really good compliment. And I I would hope that any caregiver or parent, if you're just not getting what you think you need for your child, don't give up.
Just keep there's somebody out there will listen. Somebody out there will help. And sometimes it comes in forms that you least expect. You know, I never expected that comment to send me to yeah. I need we need to get him retested.
And if that means leaving an endocrinologist, then then that's what we do. It's okay.
Yeah. I and I'll leave I'll leave my plug here for it. The Juice Box podcast private Facebook group is really fantastic if you wanna join it and you're not in it right now. It it's well worth your time and effort. It's well worth making it through being on Facebook.
I know some people are like, I'm not on Facebook because Facebook sucks. I don't disagree with you. I'm just telling you that, I made a real I made an oasis inside of Facebook for you. You should go check it out. It's free, and it's really valuable.
So, and I appreciate
Appreciate it.
No. No. You're very nice. I appreciate you coming on and talking about this with me. I'm gonna say thank you.
And, if you hold on one second, I have a couple questions for you, and I can let you go. Okay. Thank you so much, Kyle. Today's show was sponsored by Tandem Diabetes Care, the Eversense three sixty five, and touched by type one, who you can learn more about on Facebook, Instagram, and at touchedbytype1.org. Head now to tandem diabetes dot com slash juice box and check out today's sponsor, Tandem Diabetes Care.
I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with a tandem Mobi system. I'd like to thank the Eversense three sixty five for sponsoring this episode of the juice box podcast. And remind you, if you want the only sensor that gets inserted once a year and not every fourteen days, you want the Eversense CGM. Eversensecgm.com/juicebox. One year, one CGM.
If you or a loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the bold beginnings series on the juice box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five years of personal insight into type one. Our series cuts through the medical jargon and deliver straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the juice box podcast.
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#1956 Founder Story: Insulin in the Window
Founder Story: Insulin in the Window
John Wilcox was diagnosed on his ninth birthday, noticed insulin pooling in his pod window, and turned it into a company. He talks about building Diatech Diabetes, selling it, and running marathons with type 1.
Jump to a moment
- He was diagnosed on his ninth birthday, in 2005. John describes showing two photos at Friends for Life — a scrawny kid with a Lego set two hours before the hospital, and the same kid a week later at a re-staged birthday, visibly annoyed because he'd just pre-bolused for cake. Twenty-one years with type 1, MDI first, then pumps ever since.
- The company started with something he noticed on his own body. Insulin pooling in the window of his Omnipod — something plenty of pod users have seen. Researching it in an undergrad diabetes lab, he found it was insulin escaping the infusion site because the cannula had shifted and broken the seal, meaning doses that appeared to be delivered were not.
- The first fix was chemical, the real fix was data. Version one was a compound that turned the adhesive pink or blue when insulin leaked onto it. It worked but was crude, so they licensed it to the university and pivoted to fluid pressure — an algorithm reading a pump's occlusion sensor that could tell not just whether a site was failing, but whether it was leaking, dislodged, or partially occluded. That became Diatech Diabetes and its SmartFusion software, published in 2024. By Diatech's own published figures, roughly 97% of pump users experience infusion failures.
- Seven years, and roughly two and a half of them unpaid. John is candid about the funding gaps, the debt, the raises that fell apart at the last moment, and the 2 a.m. walks back to a hostel after conference days where he and his cofounder Luis would ask each other honestly whether they were okay. His advice to young founders: get non-dilutive funding where you can, and validate the problem with clinicians and patients before you ask anyone for money.
- He is also a marathon runner who just qualified for Tokyo. Ten races so far and three marathons planned for next year. He describes wearing two hats — technologist and athlete with type 1 — and having to learn the running side as its own body of knowledge. Diatech was acquired by Sequel and DEKA, where he now works on engineering commercialization; he is clear that SmartFusion is not in any shipping pump software today.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Juicebox Podcast Facebook group — The private community, free to join.
- Juice Cruise 2027 — The third annual Juicebox community cruise.
Every word of the conversation
Cold open & sponsors0:03
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. Ladies and gentlemen, may I direct your attention to t1dexchange.org/juicebox, the place where your simple answers to simple questions can help to move type one diabetes research forward. T1exchange.org/juicebox will not take you a lot of time.
It will do a lot of good. 18 or over, US residents only must have type one diabetes. T1dexchange.org/juicebox. Here comes the show. Thanks for tuning in, by the way.
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Diagnosed on his ninth birthday1:53
Thanks, Scott, for having this conversation. It's I've been following the podcast for a long time, and I you'll be able to answer this question, obviously, after the introduction. But I I can't remember when you got started, but I've known about your content for, like, almost a decade now, at least, even going through, by getting involved in the industry, kind of starting off as a young guy in the tech space, working with these, philanthropies. So, yeah, just getting started. My name's John Wilcox, and, I am a person with type one diabetes.
I've been living with it for the last twenty one years. And, really, my background outside of just being a person with type one diabetes is being someone who's really passionate about diabetes technology and and also fitness. And so, you know, starting my career, I actually started a company called Dietite Diabetes. We led that over the last seven years, and we're recently acquired by Sequel and DeCA, specifically DeCA, their engineering division. And so we led that startup.
I was the CEO, cofounder, went through a ton of crazy journeys and and just different experiences with that, raised funding from breakthrough t one d, the NIH, private capital, and developed out a product that helped monitor for infusion site failures for people utilizing insulin pumps and infusion sets. And so that was really the start of my career. Now I work for our acquirer, DECA, and help out with the engineering commercialization of their diabetes products. But on the side, again, I said I'm passionate about athleticism and fitness. I grew up as a runner, and it's really cool to kinda take all this technology that we've worked with, both with pumps and CGMs, and kinda put them to the test in a lot of these races that I've done over my my career.
And, you know, I'm a marathon runner, so I've done just about 10 races and signed up for next year, I'll be doing about three marathons. Tokyo Marathon, just qualified for, so I'm really excited about that. And, just fully engaged in the diabetes space. Love it. And, yeah, it's just an amazing amazing group of people, community, and industry.
A kid who took things apart4:14
Yeah. Twenty one years with type one. How old were you when you were diagnosed?
Yeah. I was diagnosed on my ninth birthday.
Okay.
So, quite literally the day. It was funny because when I was doing the intro talk for the Friends for Life conference a few weeks ago, I showed this photo of me the day of my birthday right before quite literally, like, two hours before I went to the hospital, and it was crazy. It's just like this scrawny little guy with a Lego set that he got for his birthday. And and then I showed another photo about a week after I got off to the hospital. It's just this face of dread of just re celebrating a birthday that is two weeks late.
And there's all these people like, hooray. Happy birthday. I'm just, like, frustrated because I just pre bolus for a piece of cake. Yeah. I'm just, like, sitting there.
It's a really funny photo. I'll have to show you something. I've already got to see. That whole diagnosis story happened back when I was nine, 2,005.
Okay.
Started off with MDI and then switched over to insulin pumps and been using those systems since.
Biology, chemistry, and a diabetes lab5:15
Tell me a little bit about growing up with type one and why do you think about I mean, obviously, you're following you follow your passion where your intellect lies, but how do you blend it together with diabetes? What about your upbringing drives you in that direction?
Yeah. Yeah. So I I was always a builder, someone that liked to tinker with tech and things. I grew up, you know, taking alarm clocks apart, looking at components, trying to, like, put them back together. I was huge in, like I mentioned earlier, into Legos.
So I was, like, always building things. And, you know, I I I always was interested in engineering and medical technology. And so, you know, going into when I was going into college and and I during that time, after I'd, you know, grown up with, you know, all of these, like, again, kind of builder toys and, like, messing around with these trinkets and stuff. When I went to college, I studied biology and chemistry and worked in and and also a diabetes lab. And so I was able to kinda mix the understanding of the human body with, like, diabetes research, and I was also working at the biomedical engineering department at, in undergrad.
And those kind of all just formed this really cool trinity of opportunity and got me into working with insulin pump systems Yeah. And mainly in research. And that's kind of what kick started everything.
I love that the thing you did is so important, but it feels like minutiae. Do do you know what I mean? Like, the sensing for the I I I wonder where that came from. Like, was it a problem you were having personally or something?
The insulin in the pod window6:56
It's a crazy story.
Yeah. Please.
Yeah. So I so yeah. So, again, grew up being really just, like, tech minded, playing with all these different things, playing taking apart stuff. And, again, got to college, got into a diabetes lab, and then they were basically saying, like, hey. We don't really have any more funding for this current project that we're doing.
You can stay in the lab, and you can have space. But this is gonna have to be, like, a self led project. And, of course, I was an undergrad, so I wasn't really needing to get funded or anything. They're just, like, kind of let you, you know, work in our lab space. You can run your own project.
Maybe you can get some grants from the university, but we'll sponsor you. But you're not gonna technically be working on a designated research project. So that was crazy because, you know, I I didn't really know what to do, and I obviously wanted to stay really involved in research at that time in undergrad. So to your point, you know, I had been volunteering at a pediatric endocrinology clinic. And through my own experiences too, I've been having a lot of conversations with people, and we've been noticing the windows of our Omnipods having medication that had been accumulating.
And I'm sure a lot of people with Omnipods can agree with this that sometimes that you can see insulin that has quite literally kind of got stuck in your window. Yeah. And if you jostle it around, sometimes it can leak out onto the adhesive. So I was experiencing that a lot, and I never really knew what it was. And after doing a lot of research on that, we found out that it was actually insulin that was seeping out of the infusion site.
One, because you've been wearing the infusion set or the the pod, and it caused the cannula to jostle so it breaks that seal. And so the pressure inside the skin was higher than the pressure to let release of the insulin. And so you'd have these situations where on day two or three, the medication would quite literally come out of the site and leak onto the pod. And so the pods were not catching this, and this also happens I mean, not to call Omnipod out, this happens with a a lot of other infusion sets as well, and I would notice that too when I would wear those. And so having those conversations with patients, the endocrinologist I was working with, and then my own experiences, I got started on this infusion site solution that would essentially it would it was a it was a a a chemical component that would react with the phenols and the insulin concentration.
Because there's more than just insulin and, you know, a vial of insulin. There's zinc, phenols, you know, stabilizing agents, excipients.
I have always disliked ordering diabetes supplies, and I'm guessing you have as well. It hasn't been a problem for us, though, for the last few years because we began to use US Med back then, and you can too. Usmed.com/juicebox or call (888) 721-1514 to get your free benefits check. US Med has served over one million people living with diabetes since 1996. They carry everything you need from CGMs to insulin pumps and diabetes testing supplies, and even more than that.
I'm talking about all the good ones, all your favorites, Libre three, Dexcom g seven, the pumps like Omnipod five, Tandem, and the Islet pump from Beta Bionics. They have even more than that. You gotta go check them out because the stuff you're looking for, they have it at US Med. (888) 721-1514. Or go to usmed.com/juicebox to get started now.
Use my slink. Use my slink. Use my link to support the podcast. That's usmed.com/juicebox. Now let's talk about the Tandem Mobi insulin pump from today's sponsor, Tandem Diabetes Care.
Their newest algorithm Control IQ plus technology and the new Tandem Mobi pump offer you unique opportunities to have better control. It's the only system with auto bolus that helps with missed meals and preventing hyperglycemia. The only system with a dedicated sleep setting. And the only system with off or on body wear options. Tandem OBI gives you more discretion, freedom, and options for how to manage your diabetes.
This is their best algorithm ever, and they'd like you to check it out at tandemdiabetes.com/juicebox. When you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's gonna help you learn about Tandem's tiny pump that's big on control. Tandemdiabetes.com/juicebox. The Tandem Mobi system is available for people ages two and up who want an automated delivery system to help them sleep better, wake up in range, and address high blood sugars with Autobolus.
From a color-changing adhesive to an algorithm11:48
And so when the insulin would leak out on the adhesive, we had made this compound where it would turn the adhesive pink or blue. And so because insulin has such a high volatility, you know, it can evaporate quickly. That's why you smell it, but, you know, it's kinda hard to see. And so it was a first stab at the the problem. Right?
We could see that the adhesive had changed color, and then we would know, oh, okay. My, you know, my infusion set or pod was leaking, so I should change it. But it had a lot of constraints. And so we went ahead and licensed it to the university, sold that. And at that time, I started working with a collective group of biomedical engineers at Florida State, and we took more of an engineering approach.
And instead of utilizing a chemical and, you know, maybe adding it to the adhesive in the manufacturing process, we looked at fluid pressure and being able to take data from a fluid pressure sensor and use that in a better way to see if a bolus or micro bolus was successful. And that was the start of our company, DiaTek, where we kind of pivoted away from this mechanical and kind of crude detection method to what was now an app that had an algorithm on it that could then connect to a pump's occlusion sensor. And then we could essentially be able to run our algorithm against the data we could pull from the occlusion sensor and get a better understanding of the infusion site. And and that then led us to be able to not just know if it was failing or successful, but if it was failing, if it was a a leak or if it was dislodged or if it was partially occluded, it gave us a lot of specificity and sensitivity to different types of failures.
And then what can you do with that information when it feeds it back to you?
Yeah. It's I mean, so the first thing is is is just reducing false positives and false negatives. And so for pump pumps, a lot of them have very dumb occlusion detection systems. And if they're triggered, you know, it causes a person to have to change their infusion site. If they are triggered, they can cause unknown spikes in hyper for hyperglycemia, and you might not know as to why, and so there's a lot of guessing.
And so removing that was priority number one, was making sure that these these alarms and alerts were were more accurate because we actually did a study we published back in twenty twenty twenty four that showcased what would you know, SmartFusion, that was our system that we had built. You know, how many false positive and false negative pumps on the market could have compared to our system? And and and this was really fascinating stuff because different pumps have different thresholds for pressure detection.
K.
It's kind of like a tire gauge.
Mhmm.
So ones that have really high thresholds, you can get a lot of, occlusions that don't reach that, that required threshold to set the alarm off. And so that can cause hyperglycemia because you're not getting your insulin and it's not getting detected. Mhmm. And then, alternatively, if you have pumps with really low thresholds, we often at times see larger boluses that were actually successful could bypass that that set threshold. And so now you're changing your infusion set.
You don't have to
Right.
Even though it's a successful bolus. So with all this to say, there was a lot of need for improvement for and and still today, there still needs to be improvement in these methods for detecting failed sites. And, you know, they're not incredibly common, obviously. People have different rates of this. We also did a study on how often this occurs, and I think it was about forty percent of people experience one or more per month.
But at least ninety seven percent of people had experienced infusion set failure at least one time while wearing a pump.
So Can you
is it is important.
Can you tell me the difference or if there is one technically with an occlusion? And what you're talking about is tunneling. Right? It's commonly called tunneling where the the liquid goes in, like, it makes its way back out up the sides of the of the infusion. So Yes.
But an inclusion is a blockage.
Yes. Yeah. So so there are definitions that for different types of failures. Right? Like, we kinda have this umbrella term of infusion site failure, but, really, there are multiple multiple types.
Right? We have, of course, an occlusion, which can be partial as well. A total occlusion is and we have X rays of this because we would take do tissue and fluoroscopy imaging. We would literally put an insulin pump on a model, like a a swine model, and we would do a bolus of insulin with a contrast dye in it, and we would take an X-ray. And we could see a three d model of the infusion into the skin and tissue is amazing stuff.
And, again, some of that's published work that we've done. But occlusions, you'd you know, it's totally blocked up. Partial occlusions, maybe the volume field that had been delivered is not what would be expected, so it's maybe a little bit less insulin. Still plugged up, though, the majority of it in the rest of the line. You then also have kinks, which technically is an occlusion, but that can often occur because of either improper insertion or maybe a muscle bending the cannula.
You have leaks, which are commonly occurring because of these tunneling impacts from a lot of activity, putting it into muscle, high pressure environments that cause it to geyser out. Mhmm. You have detachments and dislodgements, which injecting into air, the pump cannot detect. And so, you know, again, a whole bunch of different failures that manifest, yet you only have a sensor that can detect occlusions. So, again, that was priority number one with developing out the system was being able to not just detect occlusions more accurately, also broaden the landscape of detection for other types of failures.
How can it not detect even a dumb sensor, how can it not detect that there's no resistance? Like, pumping the
vehicle. That's crazy. Exactly. Yeah. This is exactly what is the the main way that we can use to detect that type of failure.
And so, yeah, you're you're thinking exactly right. You know, a lot of these systems, though, on the market don't utilize that type of sensing technology, but it's really exciting. There's lot of awesome stuff coming out that I think is now even going to be used for what and to your original question is, like, what, you know, what were we trying to do with this essentially? You know, one, increasing the accuracy of occlusion detection. Two, increasing the types of failures we could detect.
The other ones were making sure that these systems could measure up to the FCL that is coming out in these systems that are becoming more hands off. Mhmm. And, you know, it's really interesting because, of course, your system's only gonna work if your conduit is actually working correctly, right, for your fluid delivery. So we wanted to be able to have a better detection system for more advanced hybrid closed loop and fully closed loop systems. And, also, finally, being able to have something that could be used for assessing maybe when to take it off if you're going to a full seven day wear or even longer.
Okay. I remember interviewing who was it? I think it might have been Kowalski. Okay. It it could have been a really a really long time ago.
And it stuck with me. It was him. It stuck with me that he said when I asked him how can we make people's outcomes better, the one thing he said was to make cannula material better.
What site failure actually costs you20:02
Mhmm.
And and I and I I it seemed like such a nothing at first when he said it until I stopped and thought about, you know, it goes in and then people have bad reactions to it. The sites are inflamed. I didn't think about this side of it though. And and so when you when you when you're chasing it down initially, when you have the thought and you think, oh, I can work on sensing technology, do you think it's an academic endeavor? Do you think it has actual application when you first start, or do you learn the application as you go?
Yeah. I mean, luckily, we had some some really, really great team members. I think that, you know, when we talk about, like, creating an idea and, like, building something, the most important part, and this is, I think, foundational for anything you wanna accomplish in life, is is having a good team. And and that was what we had at DietTech. I mean, myself, you know, we had a lot of personal experience, a lot of work with clinical research in diabetes.
My cofounder, Luis Blanco, had also a family member that utilized an insulin pump, was very familiar, but he also worked in microfluidics. So being able to combine that, his personal experience, and then, of course, our other two cofounders had family connections to diabetes as well and an engineering background. So all of us, you know, had a huge learning curve to understand, like, how pumps worked at first, but we already kinda had a baseline. And having this idea, you know, it it made it easier for us to get started because we could really focus on the physics, really focus on the problem design around our product. And, of course, we have to give credit to our early supporters.
I mean, the reason why we went out of being in lab idea to something that would eventually get acquired, you know, six, seven years later, no joke on that Jeez. Is is is the fact that at our very first year, you know, we were really fostered in our university startup environment. We got several nondilutive grants, some early stage patent work that we were able to utilize as students. And so we really try to maximize as many university opportunities as we could while we were in college. And then right after we got out and we saw we were making momentum on our research and, again, going to industry events, connecting with people.
They were validating what we had, getting key opinion leaders on our team to confirm what we were doing. Wasn't really trying to create a problem and solve it, but, you know, identifying
Yeah. That's the hardest thing to do is find find an actual problem and address it. Right. Not easy.
Yeah. These KOLs are early adopters, our board. And then, ultimately, you know, we were funded by the National Institute of Health through a program called the SBIR phase one program, and that just catapulted us. We got that funding, and it was very academic, like you said, very heavy research. But, you know, we did that.
We did a medical device accelerator that kinda, like, amped us up a little bit more on how we pitch and make a product, commercialize it. Yeah. So combining those two, like, focus areas, we really made a lot of progress. And, eventually, we got funded a million dollars from breakthrough t one d, and that was a huge award for us. And that sustained us with some extra funding.
And so originally academic, slow to learn the commercial processes of this industry, but it was humbling, and I'm very grateful for that.
It's interesting because to to hear a person like yourself talking about it, and I'm I'm putting myself I'm I'm making some assumptions, but you didn't have a business degree. You weren't you weren't a guy who's like you weren't running around you know, everybody says they're a founder nowadays. A couple a couple of years ago, it was everyone said I'm a digital creator. Now everybody's like, I'm a I'm waiting for somebody's Etsy to say founder of my knitting company. You know?
So you're not running around trying to do that. You're trying to you're trying to work in a lab. You're trying to take your skills and apply them to something meaningful. And then you realize this has implications outside of here. And that's when you gotta look up and say, hey, business people.
I don't I don't know how to get this out of this laboratory. It's it's super
interesting. Totally agree.
Yeah. It doesn't I
totally agree with that approach. I think that I think that when when starting a company and and getting a product built, I think, you know, the foundations of knowing business is is is is equally important as r and d and product design. But to get the fire started, I think that it's easier to be maybe an engineer and someone who is able to understand the problems and the complexity of that problem and then, you know, be humbled
Yeah.
By the business requirements of running a start up. So I'm not really saying that, like, one or the other is better to start off as. But for us, you know, I think it would've been harder had we been entrepreneurial or business minded and then tried to learn all the engineering requirements to build a product
Yeah.
Versus the other way. I know. So I'm grateful that was our journey, and we had a lot of help. Like
Yeah.
So much credit to our
The people who come and to us. Yeah. Sure. I I don't know if this will seem apples to apples to you or not, but when people ask me because right now, the it's a you know, the creator culture is is is crazy right now. And a lot of younger people ask me, like, how my thing is popular.
And I always tell them, I started off by trying to help people. The business thing happened. I didn't I didn't want it to happen. I didn't try to make it happen. It was I couldn't stop it from happening.
And if you start off with how do I make money at this, I think you are going to fail. Like, unless unless you're just brilliant or really a shark, you know what I mean, or really know how to, like, navigate the whole thing, you actually have to bring you have to bring a solve to people. You have to bring some solace or some comfort or some happiness or betterment or something. Or otherwise, you're you're just propping your it's vaporware being propped up by more vaporware. Mhmm.
I I one of the things that I'm I don't doesn't seem to be a thing maybe that you you'll have a lot of interaction with. But one of the things that makes me maybe more upset than anything else of the things that I don't have any control over and I probably shouldn't worry about under that category are people on YouTube making videos about how successful they are and how you can be successful too, but their success is in telling you that you can be successful. I that there's literally nothing there making an in making an industry. You know? And
Yeah. I I I think that, again, for me, it's all about making sure that the problem that you're trying to solve is an actual problem. Yeah. And your product will fit that. And, again, at the beginning of Diatek, we had a lot of questions of whether or not we were doing something like that.
Like, is infusion site really something that that is that big of a deal to build a product out of? And, you know, we had to stay committed because we knew the impact that this had on people's diabetes management. And, again, I we ended up running a survey. It was, like, over 1,100 people we did with d one d exchange. It's, like, one of the largest surveys for for this topic, and it was really interesting to see.
Again, a lot of people had this problem. Now, you know, how do you commercialize that then? That that was a challenge. Right? Because we never went to the b to c route.
People with diabetes, like, we're not gonna pay for an app. Like, even if it's, maybe if it's, like, solving some, like, crazy pharmacy access challenge or something, but, like, it has to be a really big problem for us to, like, pay for a UI UX app. And so that went out the door for us, and we realized quickly that we had to go down a b to b route for the use of our system with a manufacturer implemented in the device before it's sold to a patient. So then So that's that was that was a huge learning curve for us, for sure.
Getting it in front of the right people28:17
Yeah. Oh, I I I've lost count of the people who have told me that they have an app that's gonna change diabetes. It just
Yeah. I'm like Yeah. We we started with that idea and and quickly, quickly changed because we did, like, a 100 person interview series, like, hour long interview
Mhmm.
And we, like, transcribed it. This was all before ChatGPT. So we were like You were actually transcribing? Yeah. Yeah.
Yeah. And so, like and they told us that. Right? They're like, don't build an app for this. Like, please I don't need another
thing to do.
We have a a platform for diabetes management. We don't want that to change. We want you to be integrated into that. Yeah. Do it that way.
And I don't know how your business moved on. I'm learning it with you. But, like, I'm from my perspective, I'm thinking this isn't a sell this to one person idea. This is a sell this to everybody idea. Right?
That was the initial goal. Okay. We were developing out a nonexclusive software licensing revenue model that would essentially allow us to operate maybe kind of like how, you know, other standard software packages can be. Like, you can purchase this as an enterprise. You utilize this, and you pay us royalties.
Right? And it was a little naive, and it was actually really naive because what we didn't realize is that in the diabetes industry, and I'm sure some people might chuckle hearing me say this because I've I've said this a lot to a lot of people, it's a very, very unique medical device. In how you access it, purchase it, and it's very competitive. I mean, we have at least 10 patch pumps that are coming into the market now via established and new players. We already have a ton more options.
And so what they look for now are the and them as in the companies that we're trying to sell to are now competitive features that they can utilize to improve the UI UX, improve the clinical care. And so so what I'm saying is here, my point is is that the the insulin pump is kind of, like, almost kinda goes into that consumer product market for as a medical device. Whereas, like, other medical devices, it's you've kinda given it. Right? And I think we might have talked about this, but, like, an orthopedic rod.
Like, you don't pick which one you get when you go through surgery. Right? And so, like, as a device, you you have options. You have to choose that as a patient but as a customer. And what separates a device over another one?
Well, maybe the the design of the the patch Mhmm. Or maybe the software that it has. And so that's what we really tapped into for our final business model, which we found out quickly was it's actually probably gonna be more sort of an exclusive model. One manufacturer is probably gonna purchase this, and this was really at the end.
Because someone's gonna want because it stop me if I'm if I'm mischaracterizing what you're saying, but every other medical device is just that. It's a knee brace. It's something an insulin pump is a uniquely personal thing that's also a medical device. So when you're selling it, you're selling lifestyle as well as as well as functionality. And so And absolutely.
So someone is gonna be willing to pay you more for your idea because it's a it's a not only does it make their device better, but it's a marketing issue, and it stops other people from being able to say, oh, we have that too.
Yeah. I would I would say that that's definitely true. Mhmm. And, obviously, there's, like, you know, different opinions on this, but, you know, you see certain patch pump companies, certain tube companies that have really bought into, you know, you know, marketing that lifestyle instead of just marketing your clinical results, and they've they've done really well. Yeah.
You know, their their their patient adoption is huge. You know, they have the scientific and engineering backing behind it, but they're kind of providing their system more so like you said, it's a lifestyle tool instead of just a medical device. And so having any type of feature that can, I think, make that more work better, improve the UI UX, That's really what we saw at the end of Ditex? Because now when we were going through, you know, discussions with manufacturers that we had partnered with for, you know, regulatory filings and all these things, they were like, wait a second. Like, we actually don't want you to embed this in other systems.
Like, we want this for ourselves. And so that's that was just a huge again, another learning moment in the journey. It was just how competitive these these manufacturers are At that for these types of systems.
Yeah. At that I bet you this is interesting for people to listen to. I hope I hope they're as interested in it as I am. But
because We're really getting in the weeds here.
So But the this is this is a this is a thing you use all day long. Every day, it's something that if you're online, you're faced with constantly. You know? Like, every listen. I don't know how I worked it out, but I think every pump company buys an ad on my podcast.
And I the way I think of that is is that I turned my little podcast into something that almost felt like a little more like a public trust. And then it felt like I really had to have everybody's voice amplified literally just through an advertisement so that everybody can hear about it. Because, I mean, I could do the same thing. I could make it I I could pick one company and just say, look. I won't sell to anybody else, but you're gonna have to pay me more.
And instead, I just go, look. I think I've found a delivery system here that you're all gonna benefit from. Let's give people choice. Let's let them look and see what's going on. I'm wondering how you got through that quagmire.
Yeah. In regards to and maybe just to clarify in regards to us eventually exiting as a device company or
just Well, either doing that or just saying to yourself, I wanna set ourselves up so that everybody uses it. I get, like, that kind of like, or or do they get into the world where they're like, look. I'm not gonna use it if they're using it. So then that doesn't work for you anyway. Is that part of how
this goes? This was kind of a a main kind of decision point when we were we were if you know, again, at and you're more so the intern of our company was realizing that the manufacturers that we had partnered with, again, at that time were more interested in having it themselves as a competitive feature, something that can benefit their own systems versus that then being something that was available to all. And even like, I'm not even talking about the personal side of this. Like, you know, we had been this at at this for seven years. We had an opportunity in front of us.
And and so in addition to that, you know, it really matched up with the timing for us as having built this company to this stage, finding the right partner, coming to the conclusion that, you know, this is the dynamic for a b to b business for us and our stage at for our business model, which was, again, being put into a situation where exclusivity was probably the main thing for this product. And so we realized that. We had good timing, and it was very interesting too because at that time, like, you know, we're we're learning about all of these comp pump companies that are coming out with these new products. And so we really use that also as a as a as a, like, opportunity because we're saying, hey. Like, for those of who are working with us, look at all these new pump companies that are doing all these really innovative things.
Full circle, back to the first pump36:22
Yeah. How are you matching up to
that? Right.
So yeah, really trying to drive those conversations.
So so you you said in the beginning, now I'm trying to get a better context on it. You're so the company is sold to who?
We were sold we were we were bought last year, quite literally, I think, I'll double check this, like, almost a year to date
Oh, no kidding.
By, by DeCA, research and development, which is, technically the its own entity, but is the manufacturer of the SQL Twist pump. Okay. And then SQL is the commercialization, go to market, and and and manages FDA, things like that for the business. And so so yeah. So DECA DECA is technically the company that acquired DietTech.
Got it. So is the thing that you and your founders developed, is it living in a twist pump right now, or is that a future idea?
Yeah. So it's not currently in the software version that's available to people with die people with diabetes or people that use the the pump now. Mhmm. We're we're you know, so we're we're working on that, and we're really excited about some of the updates that we're gonna be providing for that system. But yeah.
No. As of right now, it's not currently available, but we've been utilizing it really awesome as a tool internally and then again for some future products that we'll be building as well. So it's it's it's stay tuned. That's all I can say.
So this even though this seems like such a big deal and and such a hill to to conquer, it really is more of an entree into more things. Yeah? Yeah. You were nodding along there for a second, but okay. Alright.
And did you get to keep your group together? Did you all go to DECA or only some of you?
So I went to DECA. Mhmm. My cofounder, Luis him and I were the only two cofounders that went all the way from day one to zero. Our other two ended up amicably leaving the company during the seven year period that we had started, and those were really easy transitions, and it was good for them too. So Luis and I were the only two cofounders at the end, and myself went on to work at DeCA.
And then Louis ended up going and starting a PhD at UC Santa Barbara, where he's at right now. So he's working in pump development, microfluidics, and he's really enjoying sitting up there on the beach. So I'm like, that's probably not a bad idea. Maybe
I was gonna say, I I haven't seen a beach in a while. How far back in your history do you have to go to find you before you find a version of John who would be absolutely stunned that any of this happened? At what age did you not have any understanding of your path?
Man, that's that's a huge question. I I mean, I'll be honest with you. Like, I did not want really anything to do with diabetes over the first couple years of me having it. Mhmm. Mainly because of the fact that I was in a in a care situation where I was only utilizing MDI, primarily.
I I had been introduced to the Omnipod system, my for my first system that I used when I was short after I was diagnosed. But, again, the majority of my care was on an MDI therapy. And so during that time, I was like I was like, man, I just I hate this. Like, I'm sure a lot of people can relate to that moment too, where it's just like, this is my new reality. Yeah.
And when I transitioned full time to a pump, that's when I really my life improved. And, obviously, we didn't have AID systems back then, but even just going from the injections to that was just such a game changer. And I remember I think at that moment when I transitioned in my first couple years from MDI to pump full time, that's probably the moment to answer your question because I'd be like, well, I'm getting this this, like, this, like, thing that, like, goes on my body and, like, keeps me alive. Like, whoever made that, that's amazing. Yeah.
And, like, to think eventually that, you know, I'd be, you know, working on this topic. And even more specifically, to answer that question, my very first job I ever had was working in the research lab at at in Yale New Haven. And so I worked in Bob Sherwin and Bill Tamberlin's office and rest their souls, but, you know, amazing investigators. And I remember being in Bill's office one time, and the auto syringe, which was made by DECA and one of the first trial insulin pumps, was on his shelf. And I remember asking him, like, what is that thing?
Like like, you know, it's a syringe with a piece of, you know, wood, essentially, or plastic. Like like, just it's very, very you know, as it should be, it's the first insulin pump, essentially. You know, very interesting design. And he was like, oh, that's the first insulin pump. And so to to to think about that moment too where I was like, My first job working at Yale, seeing that thing, and being like, that eventually will be the company that's going to buy your company that made that.
Yeah.
Those are probably two moments in my life where I was I would I would honestly probably be really proud of, like, what we've done at Dietrich. You know, transitioning to the pump, seeing how amazing that system was when I was first diagnosed and and just being fascinated with it. And then that second moment where, you know, I'm in my first, you know, job in diabetes, and and I'm seeing the very first insulin pump and knowing eventually that'll be the company I sell DietTech to. So we sell we'll sell DietTech to. So That's pretty awesome.
Staying on one path42:33
Crazy.
I I I have to commend you on staying on a path too because it's I mean, especially, like, now I talk to young people all the time. Like, most young people are like, I don't know. How do I get rich? How do I do it quickly? You know what I mean?
And it's a lot of focus like that. Not a folk I mean, your thing is, like, so like, it's not you weren't saying I'm gonna make a new insulin pump. You weren't saying I'm gonna make an you were like, I'm gonna come up with a way for a system to track if your policies go in, and that's gonna make people's lives better, and there's value behind it. And there's value behind it because it's important. You you know?
And that's a lot of foresight. Did you ever did you ever have a moment where you thought, like, oh, let's just sell it off here or, like or did you ever think of bailing on it that it wasn't viable?
The years they didn’t get paid43:18
I mean, there were some really, really, really rough times during our startup journey. Like, unbelievably rough. Like like, we did not get paid collectively. I think two and a half years out of the seven years spread over, you know, those seven years, but, you know, we didn't get paid.
Gaps of time. Yeah.
You know, we took on debt and and and but kept pushing because we would eat we get this milestone that would, like, reinvigorate our flame. Right? And they were just phased out enough for us to, like Keep you going. Not just die yet, and then we got it. And then we're like, oh, okay.
Here's some new life, you know, pumped into our souls to keep doing this. So yeah. I mean, you know, we had several funding opportunities that we had full expectations of closing that fell apart. And, yeah,
they're they're
just I don't think I'll be honest with you. Like, I think that we and, again, back to that point about having a really good team. You know, finally, Luis and I, as cofounders and we, you know, we had other team members too that we brought on. We we we had, you know, systems engineers and and data scientists that we hired on as well along the journey. But Luis and I were, like, in it the whole time, and I would always have to ask him.
I'm like, hey, man. Like, we'd have these conversations, like, walking back from an ATT dinner. It's, like, 2AM, and we're in, like, you know, Florence or something or crazier. We're in San Francisco for an ADA. And, you know, it's, like, 2AM.
You know how these conferences go. You you spend all day working the floors, then you go to dinners, then you go to the, you know, social events after. And so we're walking back to our hostels, typically where we would stay, you know, miles away from the conference centers. And we would always have these checking conversations and be like, man, I'm like, are you like, be honest with me. Are you good?
Like, is this is this, like, not no jokes aside. Like, we have to do this, like, six more days in a row. Yeah. Like, this type of thing. Are you good?
And both of us would ask that question, and we would all always answer super, super truthfully. And I think, you know, we never really said that we weren't good. We always said maybe we need something, more help with something. But, yeah, we'd have those types of conversations, and I think it's really important. Like, if you're gonna do something crazy like this, like, you need to have people that are bought into the idea of being vulnerable, telling you exactly what you need because lack of communication is just gonna lead to a breakdown in the whole Everything.
Idea or system or whatever. So yeah. Listen.
I I haven't been to many of those things, but I gotta tell you, I get done. I go right back to my hotel room. I eat, I go to sleep. I I when when people are like, I'm going to dinner. I'm like, I don't know what you're talking I just I know.
I just talk for eight hours in a row. My brain's on fire.
Yes. But So much. Yeah.
But in those moments, John, you're out there explaining and explaining and explaining again, waiting for someone what to look back at you and go, oh, that's a good idea. I'm interested in that idea. Like, that's really it. Right? You're just throwing a fishing line in over and over and over again.
“I hated being called a founder”46:41
That's gotta be a As young founders Yeah. I think the biggest mistake that I've seen and, like, it was funny because I always hated being called a founder because there's that, like Yeah. No. I know. You know, there's that stereotype.
Right? Like, I was just like, I I'm just we're we're scientists. You know? We're we're doing this thing. Like, maybe you're innovators.
I don't know. Like but, like, please, like, let's let's separate the, like, Silicon Valley mantra from, like, what we're doing here. Like, we're trying we're trying to do something like. And and so, yeah, going to people as 23 year olds with this ambition to create something was incredibly challenging because you don't have the credentials. You don't have the experience.
You just have an idea. And maybe that idea and a way to solve a problem. And maybe those things are good, but most of the time, sometimes they're bad. And so what we did at the beginning to and give us a little bit more credit was to find those key opinion leaders that we could ask honest questions about, what are we doing wrong? And and well, there are two.
It was the key opinion leaders, like I said, in those interview sessions. And so at the very beginning, we could then turn to data that we had collected from, you know, hundreds and hundreds of interviews and say, like, this is what at least a subset of people are saying with diabetes. We can publish on this. And then these are also what key opinion leaders in the space, like leader leading endocrinologists, leading into industry experts, previous founders of large companies that were able to successfully exit. And so we try to pull in these the support from, you know, the diabetes community and then also leaders in the diabetes community.
And that gave us just a lot more, I think, confidence and ability to speak on this problem because we had these amazing people backing us. So that was, I think, a huge strategy for us at the beginning was validating what we're building with leaders and the community Yeah. And then using that as
And staying on focus of getting you you used the word exit, but the an exit's finishing with something that somebody values enough to buy from you. I do see sometimes some companies seem like they're professional capital raisers and no and no desire to actually get to the accent. Yeah. Yeah. That could happen.
Right? You could you could say, well, people are interested enough. They'll throw some money in. This will keep us going a little longer. We don't necessarily have to deliver anything at the end.
We can just always look like we're trying.
Yeah. Yeah. So it's Yeah. We were very, very, very intentional about how we raise capital or dilution, the mechanisms at which we raise, you know, different types of convertible note mechanisms, safe notes, early stage equity capital agreements that we had. And in regards to our strategy for that, which it wasn't a question, but it just gets me excited because whenever buddy somebody talks to me about raising money as a startup founder, you know, we really try to maximize non dilutive funding as much as we could as a science like STEM.
Obviously, not every startup has access to these resources, but luckily, in the diabetes med tech space, you do. And so, again, that NIH funding was incredible. We probably would have gone for a phase two, which is like a follow on funding award from the NIH. Mhmm. But managing that, you know and and then, of course, breakthrough t one d and then a bunch of other things that we were able to, you know, accumulate other little grants and stuff.
We try to keep it as nondilutive as possible Yeah. Versus relying solely on private equity and capital. We did raise that, but we we never got past the series
a Okay.
For our private capital raise.
I wonder how many people listening understand this only because of Shark Tank.
Yeah. Basically, for if if if if anything leaving my mouth right now can be understood from raising money, we tried to raise more free money than we did money that we would have to pay back. Yeah. And Or give away as as that.
Or give away a piece of the of the the idea of the business too. Yes. Exactly. Was stressful time, personally? Were you did you have a lot of free time?
Was this a very encompassing thing?
I I have to, like, just show off my wedding ring because my well, back then, girlfriend, we met, like, right when I was making the decision on whether or not to accept the medical school acceptance that I received. I'd taken the MCAT. I know. I didn't really talk about this, but, like, I took the MCAT, got in to a medical school option. Instead, I'm like, look at this little lab designed project that we
What if I made a UI that measured whether or not insulin comes out of a hole when it's not supposed to?
Yeah. And she's like, what do you mean? I'm like, and we're gonna build into this company. And, like, look at all my friends over there. We're all, like, smelly.
Like, just like
I'll bet you own a house in ten years maybe, or I could be a doctor, I guess. Yeah.
Yeah. Yeah. Exactly. And so she stuck with me through that decision and was the most supportive person I could have ever asked for.
Well, John, I don't wanna not give her credit, but on top of being incredibly smart articulate, you're a handsome man. So I was assuming yeah.
She She thank you. I I I I I she has seen me in my ugliest state. So I was, like, the best, you know, to have her in those moments where I was, like I looked like Gollum and, like, and, like, stayed up for, like, two or three nights, like, working on stuff. But she
Yeah.
Yeah. She was a huge support system and, yeah, was just instrumental in making sure that I was able to, you know, still bleed You
don't have to explain it to me. In in a handful of days, I will be married thirty years. And if it wasn't for that girl Amazing. I would live I'd probably work in a sheet metal shop still. So
Man, that's awesome. Congratulations to you. Yeah. Thank you. That's that's huge.
We're we've we've only been together technically for two years, if you wanna say. I say ten because that's how long we've been together, but, like, technically, it's two years of marriage.
So I'll I'll give you a tiny bit of advice that you can use or not use
Yes. That you're not that you're
not asking for. People say, how did you stay married for thirty years? I say, you have to willfully not get divorced at least twice if you wanna make it for thirty years. You have to
I will take that. Yeah. You you have to I'll take that advice.
You have to believe that some years are good years, and some years are okay, and some are great, and some suck. And then in the aggregate, it washes out. You can't expect to be happy constantly like gleefully happy all the time. You really do have to have other people's best interests at heart because stuff is gonna go wrong for each other and you're gonna have to like you're gonna have to cover. And then the only thing I can tell you is if you ever have a baby, everyone who has a kid is gonna tell you to appreciate it because time goes by faster than you think and you are gonna think that they're just yelling a t shirt slogan at you.
But it's the most honest thing that anyone's ever said to me. You will look up and be my age and not know how it happened. It's Yeah. Really is something. So
I mean, I I agree with that wholeheartedly.
Yeah. You can't stop time is the worst part of of finding a family and loving people, honestly. So
Well, I'm I'm trying to I'm trying to hold on to as long as much as possible, and, you know, we've we've made a really good life for us. Now we're in Atlanta. She works for Chick fil A and exec, and she's just an amazing person. So
It's awesome. Yeah. You did skip over a couple of things there. Like, you just kinda said yell off the side of your mouth like it was no big deal, but I felt like maybe things were going okay for you coming out of Cal. Where did you go to undergrad?
Marathons, and running with type 155:00
Yeah. Yeah. Go, Knowles. I went to Florida State. I'm an incredibly depressed college football fan right now, but I am a huge college football fan, but depressed one at that.
So I got to see us, you know, in the national win the national championship season my freshman year Wow. Which was amazing, but now we stink.
So,
yeah, I did all of my research undergrad, You know, worked in that research lab I talked about with the colorimetric method detection and where we also then eventually started DiaTech. Did that at Florida State. But while at Florida State, I did some summer research experience or internships at Yale New Haven, again, with the Sherwin and Tamberlin Labs. And then, you know, was premed, but ended up fully committing to diet tech. Yeah.
And yeah. And then funny enough, I actually got a master's while doing diet tech, which I do not recommend doing. That was, like, the craziest experience. I'm like, oh, my life's not hard enough. Like, just just add this.
But it was a health sciences degree in MS at in at Columbia in in New York. How to Did it help you is what you were doing? Yeah. Absolutely. Huge in helping with, obviously, physiology, understanding, and, obviously, a lot of things in regards to academic research, publishing, clinical research, regulatory approvals, processes.
So it's it was a really amazing program. But yeah. Yeah. Did that. It's impressive.
And I'm in Atlanta. Yeah.
Well and that's is that where your company is, or do you work remotely?
So I work remotely as of right now. Deck is actually based in Manchester, New Hampshire. Oh. So I go back and forth between there when I can make it, and then I also do a lot traveling for work as well. So
Yeah. So Can you tell me what it is you're doing for them and what you see as your future? Because, I mean, you're you're in a really unique situation. You're 30 years old, but you've already developed something that's actually valuable for humanity, sold it. I'm assuming you're you're reasonably comfortable now, but you're still working for them as much of that as you're comfortable sharing.
Yeah. I mean, there's a lot of amazing new technologies coming out in the landscape, you know, that we know with, like, FCL, longer wear time, adhesives, you know, interoperability with a bunch of different systems, utilization of of of closed loop systems with other types of medications and indications. I mean, we also we know a lot of people that use GLP ones with with their pumps, but, like, you know, how does that impact device usage, you know, different insulin administration methods like a frizz, and how does that get employed into a closed loop system. So ton of really amazing stuff. And then, of course, always just improving the hardware, and software of existing pumps.
So working you know, it's a lot that's a lot of things to work with, but there's, like, a real future, I still think, in diabetes technology innovation. And so I'm, you know, looking to stay involved with that as much as possible. And so at DECA, you know, working with a lot of those types of initiatives, projects, that's what I'm currently doing. And it's been an awesome, you know, opportunity. I can say that just the engineering talent at that company is just incredible, and they've been so welcoming and and supportive.
So, yeah, love to work continue working on projects with them for their pump systems or the twist pump. And, yeah, we'll see where that goes after that.
It's awesome.
I hope that's a good enough answer.
No. I think that's a fantastic answer. Listen. I'm gonna pitch my idea to you right now because I don't think I have the smarts to get it to anywhere. But and I also have no idea if this is technically or scientifically possible.
But I think that people who benefit from a GLP would benefit from taking doses of it more the way that you take insulin and less of the once a week. I would love somebody to either develop an insulin that already had the had it mixed in or that was giving you a microdose of it once a day maybe. That's my idea. I've I've Yeah. Yeah.
It's it's co co formulation thing is is definitely really interesting, like, having the GLP with the insulin and having, like, a stability that allows for that. Yeah. Yeah. There's a there's a ton of amazing, I think, research that's going in on that. Specifically, what I think is really interesting with the use of that is the possibility of how our infusion sites and our health is with our infusion sites and the length we can wear our infusion sites for when we utilize something like a GLP with an infusion set or a pod.
Because one of the primary issues, I would say, with infusion site health is quite literally volume being infused into the site. Yep. One, there's, like, a mechanical issue, obviously. Like, more stuff you pump in there, the more things get, like, jambled up. Right?
Like, so if you're pumping a lot more insulin into a site, quite literally, the tissue is gonna, you know, be more altered if you were to pump less. And so, yeah, there's a lot of fascinating research that's going on right now about, okay, if we use, you know, maybe different insulin amounts pumped in the same spot Yeah.
Then don't the sites last longer?
The sites could possibly last longer. Right. Right. And so utilizing a GLP with that, you know, there's there's hypotheses that maybe we can really extend or prevent things like lipohypertrophy or extend the the sets for a lot longer because we're literally infusing less insulin.
Yeah. My daughter must use 30 or I mean, sometimes I think it could be 40 less insulin when she's using a GLP versus not using
I'd be very interested to know what her sites would look like, like, versus if she was doing her full total TDD insulin requirements for the three or however many days she wears her
Yeah.
SATS four versus it with the
Oh, can't tell you how many things I think are benefiting. I think she has joint pain that's not as bad when she's on a GLP. I think her inflammation goes way down. She looks healthier. I was describing to somebody earlier today.
I've been using it for three years. I have a mental clarity now that I just couldn't explain to you before. I don't even wanna like, I I don't mean, like, jacked up running around like a lunatic, but I don't I go to bed because I know I should go to sleep. But there's things I wanna do, and I could keep doing them. And Yeah.
I did not live like that prior to this. So, I mean, I I I John, I would never do this, and I mean that, but I would be lying to you if I haven't thought to myself, I wonder if we could just mix this stuff together, put it in the pump, and see what happens. I wouldn't I I'm I wouldn't do that science experiment on my kid or somebody else, but it's I think someone smarter than me is gonna figure it out is what
I'm saying. Have to get in touch with Luis because he does a lot of of, like, insulin aggregation research.
Yeah.
Basically, looking at, like, is what infusing through the pump aggregating and causing clogs or issues? And so Mhmm. Maybe that's a a science experiment for Luis at some point if you guys ever get in touch. I have to make That would as well. He's always looking for amazing projects to, like, apply for grants and stuff with.
But yeah. No. It's Yeah. Yeah.
Yeah. I just know
that It's amazing.
Having these conversations with people really does allow me to see kinda bigger picture what everyone's talking about and what's working for people. It's almost I mean, it it makes me feel like sometimes having this podcast makes me feel like, what if we all went to the same AI and told us told it our life stories about type one? Would it start drawing lines to things? But we never have those conversations. And there's nobody who's in charge of remembering that seven weeks ago, a lady told me that her kid's bipolar issues lessened on GLP.
Like, that's a thing you say out loud, but nobody nobody clocks it. You you know what I mean? And then I get to have enough conversations over and over again that I interview a woman the other day, and she's talking about some stuff. And I realized, oh, she just said the same thing the lady from six months ago said. That's not a coincidence.
I'm not gonna do a study on it, John, because I make a podcast. But I but I can say it out loud for people like you who are listening to maybe, like, have an idea.
I can't wait to see in the next diabetes care article that is primarily authored by Scott. He's amazing. He's amazing. That
would be insane.
Findings. Yeah. No. I listen. I a drug where you continuously see FDA approvals for co indications for diabetes, weight loss, I mean, dementia as well, or things that they're working on.
Like, it just goes to show, like, the mechanisms of action of this drug is is pretty profound.
And we don't know what we're talking about. I always bring up the fact that you that anesthesia works, but we actually don't know how it works. I think that's fascinating. We there's a thing we can give a person and make them unconscious and then turn them back on again and ask somebody to describe how that happens and they go, I don't know. We just know it works.
So
Yeah. It's it's it's it's really, really interesting. And, obviously, everyone brings up, you know, the you know, what it will be in the long term use case for this, but I listen. I think there's studies that showcase that. I'm not very apt in that, but, you know, for what it's worth, how it's providing, like, really great outcomes for people that use it in the type one diabetes space Mhmm.
Is really awesome to see. And, you know, I'm all about options. You have an option to care for yourself and make your life better. Like, Go for it. Cool.
I will share one thing with you, then I'm gonna ask you a last question. The thing I'll share is that I've said before, if I were to grow a horn out of my forehead that said Eli Lilly up the side of it, I would put Christmas lights on it and tell everybody how proud I was of it because of all the because of all the good things that have happened to me. But in the very beginning, you said you feel like you've been listening to the podcast for, like, ten years, and you said you you had a question, but you didn't ask it off me. So do you remember what that was? Or
Yeah. Actually because well, when when did you start the podcast specifically?
January 2015.
Okay. That makes sense. Because I remember I remember when you because right after that, Medtronic got their first FDA approval for a closed loop system. Right? That was, like, in 2016.
Okay.
And I think that was about the time I remember starting to listen to
your Really? That's crazy.
Yeah. Yeah. I I've always been aware of you producing, and you've kinda been, like, one of the original diabetes, again, content creators in our space. So
I wrote wrote a blog I wrote a blog for eight years before I started making the podcast, actually. Yeah.
That's yeah. I I just I guess, like yeah. My question was when you when you started the podcast, because that makes sense. That was, like, about the time I think I remember Mhmm. Hearing because I I'm a nerd.
Right? Like, I listen to the like like, I I pay attention to a lot of things in the industry and stuff. And, like, you know, I think there's a lot of crossover between community and industry in the diabetes space. So Yeah. Yeah.
It's just super cool to have, like, people like you be able to come out and, like, produce these types of, like, dialogues and people to learn about things too. So, yeah, that's awesome. In another life, if I was more confident, I would have this. Like, confident with my tech. I I like, like, this type of thing.
I I would I would I would love to, like, do something like this.
But
yeah. Listen. I'll leave it to the experts.
You can get it set up for you. Listen. If you wanna come on here and talk about technical stuff, you can come on as much as you want. If you're just looking for a place to put your voice. But yeah.
No. I I wrote that blog I wrote that blog from two thousand seven, January. I mean, I still have it. I put something up on it the other day. And then I was probably one of the handful, like, OG diabetes bloggers.
There were people out before me for sure. Scott Scott's with Blue Circle Health now, guy named George, few people like that. And then I just noticed that people weren't reading. Like, people were just trending out of the platform. And I kinda I kinda panicked a little bit.
And I thought, oh, I help all these people. Like, they're gonna stop reading, and then I'm gonna be, you know, I'm gonna be my space before you know it. And I happened to write a book for about being a stay at home dad that led me into meeting Katie Couric who told me I was good at talking to people. Oh, okay. Then I see Wow.
That's crazy.
That's a weird yeah. So I pivoted. I I literally bought a microphone, and I thought, well, Katie Couric said I was good at talking to people. And I grew up listening to Howard Stern. Like, I could probably pull this off.
And, like, this really was it. And then I started making the podcast. But it wasn't long before the the space kinda came after me a little bit because I was talking about how we were managing Arden. And people were like, you can't tell people how you do things. It's dangerous.
And when I saw people telling me that, I thought, well, I'm doing the right thing. And and so it's
Exactly. Yeah. Like, like, you have all these archaic, like, thoughts and, like, approaches to diabetes management
Mhmm.
Especially probably at that time.
Oh, sure.
And you need to, like, shake that up. Right? Like, you're creating content that is more relatable, I think more what's the word I'm looking for? Yeah. It's just it's not the standard experience that I'm sure we all had more so before.
Mhmm. Maybe, unfortunately, some of us do today as well. Oh, sure.
Yeah. Yeah.
Of going to the doctor and having a really, really just terrible time on how you're educated or how you learn about technology or how you learn about anything in our industry.
The way I
think all shout out to amazing endocrinologists and health care providers today. We have so many that have just totally changed that, and I'm so grateful for them.
I I tell you, there's there's fast fascinating fabulous people all over the space, and there's some people who have horrible experiences. And I think that if you look at almost any human experience, you're gonna see, like, brake pumpers, people who are just, like, scared, risk averse, and then nothing moves. There's people who don't wanna, like, pay attention at all and just run forward. That's not okay. The middle is where you need to live.
Right? Because if not, then everyone ends up listening to authority, and then you get 15 grams of carbs, fifteen minutes, and then test again. And then that's and then thirty years from now, your a one c has been 9.5 or 10 for your whole life, and you have all kinds of problems. And then we say, oh, well, it's okay. Like, know, we were being safe.
That's not safe. You you know? So, like, I just thought, like, I see what's working. We should tell other people so that they can go try to figure it out for themselves. And that's to what I said to you earlier.
I don't know if I said it while we were recording or not. But when I was giving advice to somebody, was like, if you wanna be valuable in this space, like, just help people. And then, you know, you'll stick around longer. So Yeah. This is my Absolutely.
My twelfth year. And I I've never said this out loud before, but prior to me starting the podcast, there were a couple of people doing something called blog talk radio shows where you would literally pick up your home phone and call into a number. And you'd both be and it would be recorded on a third at a third party place. Then the the originator of the call had access to the recording, which was terror. It sounded horrible.
But I was on a number of those. And I remember people saying, like, hey. You were really good on that or that was interesting or that was fun. But the people hosting them, god bless them, were all just like, you know, they stuck the same couple of questions over and over again. They never really stretched out or anything like that.
And then there was this guy named Tony who had one that was pretty popular. He had type one. And I I later said to him, I should find him and have him on here. I later said to him, I'm gonna start a podcast. And he said, you're gonna run out of stuff to talk about.
And I said, I don't think so. And now I almost and now I almost have 2,000 episodes.
Exactly. Yeah. There's so much more than just
The running influencer1:11:49
You you'll run out
of stuff to
talk about, John, if you only talk about the same crap that everybody's talking about all the time. You know what I mean?
Yeah. Exactly. Like and it's funny because, you know, my entire career is built mainly around diabetes technology. But, you know, a side thing that, like, I love to do, again, as we mentioned, is fitness and running. And so, like, that has its own entire just field of knowledge and products and everything Yeah.
Related. So it's so cool to see those two. Like like, every little part of this diabetes community that we have, there is just this open world of, like, knowledge and topics. And and so, yeah, it's just it's just crazy. Like you said Yeah.
There's so many things you can talk about all the time. I often, like when I put my two different hats on between being a technologist or, like, an athlete with type one, I'm just like, woah. Like, I there's so much like, there's a learning curve, like, for me. Like, I I have to accept and and, like, taking all this knowledge about, okay. Well, like, what are strategies of running with diabetes?
Like, do how you do a marathon? How do you do an ultra? How do you do a five k? Like, how do people do all these other things? So, yeah, there's all these topics, and I'm just trying to stay ahead of it as much as I can.
It feels like you're changes every day.
It feels like you're doing a good job. Let me I'll tell people let me tell people a funny story, then I'll I'll let you go. So somebody put us together at ADA, but we didn't get a chance to talk. And so we met up at Friends four Life, and I was we you texted me. I I can talk now.
And I was at lunch with a a table full of people. But if you know at Friends four Life, like, unless you can fill a table with 10 people, you might be sitting with people you don't know. And so I'm sitting and having lunch with a few people I do know, and there's a family on the same table who we're chatting with, but I have no idea who they are. And I said to the guy, I'm like, oh, I'm so sorry. I gotta go.
I'm gonna go have a chat with John Wilcox. And he goes, who's that? And I started talking about who you were. And the woman goes, oh, I thought he was a running influencer. So so Exactly.
This fantastic like, you're this guy. You just you just explained this entire, like, thing from college to, like, making this great device, an idea, and bringing it out into the world and everything. And there is a lady somewhere who is like, oh, that my kids love him. And then I swear while he was talking about the father opened up his phone, opened up Instagram. He goes, I follow him.
And hold and and I started and I was like, how do you know who he is? And she and he's like, oh, he's a guy with type one who runs. That's the only way they knew you. It's really I thought that was fascinating, actually.
Yeah. Yeah. Yeah. Like I said, different hats and Some pretty different hats. I know.
It is. I know. It's it's it it is it is rooted somewhat in masochism. Right? Like, there's, like like, running is painful.
Doing a startup is painful. Maybe that's, like, the synergy between the two
of them. I I didn't wanna be a I didn't wanna be your therapist, John. I didn't wanna bring that up.
But Yeah. No. It's it's that you could see how I I I process my my challenges. Right? I do chat these challenging things.
No. I I I I I love I love that. And, yeah, I just it's been awesome. I know we didn't really talk more about the running, but it's it's really good to to dive into, like, into the career aspect of this whole journey. And
I find this very interesting. I appreciate you being willing to sit down and talk about it. I'll have you back again. We'll talk about the running some other time.
Oh, yeah. No problem. Yeah. I'd love to. And, no, Scott, thank you so much.
This is always this I'm I'm honored to be on here. Like I said, a longtime fan, so thank you so much for this. It's always great to have a conversation.
It was great to have you. Hold on one second for me. Okay? 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.
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