#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.
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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.
The bold beginning series and all of the collections in the juice box podcast are available in your audio app and at juiceboxpodcast.com up in the menu. Thank you so much for listening. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple Podcasts, please do that now. Just hitting follow or subscribe really helps the show. And if you'd like to go a little further and leave a review in Apple Podcasts, that would be fantastic.
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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.
Are you subscribed? Please subscribe if you're not. Today's podcast is sponsored by US Med and Tandem Diabetes Care. What a pair. I'm a poet and didn't even know it.
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Go to usmed.com/juicebox or call (888) 721-1514. Get your supplies the same way we do from US Med.
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.
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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.
There are links in the show notes and links at juiceboxpodcast.com to Tandem and US Med, who also sponsored this episode of the juice box podcast. Get started with US Med at usmed.com/juicebox or call (888) 721-1514. Get your free benefits checked and get started today with US Med, the same place that we get our diabetes supplies. Usmed.com/juicebox. Links in the show notes.
Links at juiceboxpodcast.com. Click on those links, baby. Support the podcast. The juice box podcast has been in production since January 2015. And in that time, I have amassed just a fantastic catalog of information for you.
Defining diabetes, bold beginnings, the diabetes pro tip series, small sips, fat and protein, algorithm pumping, mental wellness, ask Scott and Jenny, the diabetes variables, defining thyroid, after dark. There's even an Omnipod five pro tip series. Come on. Pregnancy, how we eat, grand rounds, cold win, GLP meds. What else do you want from me?
And if you'd like to get going now with this podcast, boy, oh, boy, you have not picked a better time. You haven't because we have a diabetes myth series, and there's even a type two pro tip series. All of this all of this is free. Free. That's right, Scott.
Free at juiceboxpodcast.com. Go up to the menu, click on a series, they're all right there. Or you, of course, could use your Apple podcast app, Spotify, or wherever you get audio. Every episode is listed on the website along with its episode number so you can search for it in one of those apps. I've done everything I can do, baby.
There's transcripts. You wanna read the podcast? Go read it. What do I care? I'm not your mother.
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You'll really like it. If you want, go to juiceboxpodcast.com/reviews and read what other people have written.
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#1955 Lotus Flower
Lotus Flower
Scott has spent a week stewing on something and asks Jenny Smith to let him record it: what the attention economy is doing to people trying to learn how to manage their diabetes.
Jump to a moment
- Scott brought a grievance and asked Jenny to let him record it. After their rules-series planning call, she said they should have recorded the conversation that came before it. This is that conversation: a week of rumination about the attention economy, framed by Scott as a circuitous route to a point about taking control of your own outcomes.
- His core claim: social media stopped being a place you go and became a thing that feeds you. Jenny lands the distinction plainly — mention socks once and you get fed socks. Scott's version is that a culture of “here's a thing if you want it” became a culture of making you afraid, scared, or excited so someone can take fifteen or twenty dollars from you.
- He names the mechanics on air. Curiosity gaps, opening loops that cut before the payoff, FOMO countdowns, outrage bait, false personalization. His worry is that this produces the equivalent of empty calories for your attention — and that in diabetes specifically it means people get their attention taken using their own condition, get told it's hopeless, and never go find better.
- Jenny's counterpoint is the useful part. She pushes back when Scott says nothing he's done in a decade works, pointing at the survey results. Her framing of the actual problem: she can teach anyone the information, but they have to apply it and keep applying it. And she explains why she gives it away free — she cannot replicate herself or reach thousands of people one at a time.
- Two images that stick. Scott's cigarette story, told to his brother forty years ago: if you're fine knowing twelve people at a boardroom table are laughing that you bought those, go ahead — but they're trading your life for two dollars. And the lotus flower from the Odyssey, keeping people happy and numb on a beach while their time drains away. His ask is simple: go help yourself with something.
- Diabetes Pro Tip series — Episodes 1000-1025 with Jenny Smith — the thing Scott keeps pointing at instead of a six-second video.
- Listener survey results — The data Jenny cites when she pushes back on Scott.
- Jenny Smith — Integrated Diabetes — Jenny is a dietitian and diabetes educator who has lived with type 1 for over 35 years.
Every word of the conversation
Cold open & sponsors0:04
Friends, we're all back together for another episode of the juice box podcast. Hey. Nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. Two quick ways you can help and support the show.
First of all, if you're looking for a sugar pixel, go to customtype1.com/juicebox when you buy through that link. It supports me. And if you want to go to t1dexchange.org/juicebox and take their survey, that's also a great way to support the podcast. Of course, taking the survey will also support other people living with type one diabetes, including research, t1dexchange.org/juicebox, and customtype1.com/juicebox. Alright.
Let's get you into the program. This episode of the podcast is sponsored by MiniMed and the Kontoor Nextgen blood glucose meter. MiniMed, of course, the innovators behind the MiniMed flex system, a small, sleek, and discreet insulin automated delivery system controlled from an app. Nothing comes close to freedom you can feel. To learn more, visit minimed.com/juicebox.
There is one blood glucose meter in this house, the Kontoor Next Gen blood glucose meter. That meter is on my daughter's person right now and at all times. It is incredibly accurate and waiting for you at Kontoor Next dot com slash juice box. Alright. I'm hitting record right now.
The conversation they didn’t record1:38
So Great. Jenny's back. It must by now be clear to people who listen that you and I chat for a couple of minutes before we start recording usually.
And I would would think so. Sometimes more than a couple minutes depending on what's going on.
Right? There are times you don't get episodes with Jenny because she and I just talk for an hour and never record. So, at the end of our little chat last week before we went into the rules that people break about diabetes, which is gonna be a new series that you and I are gonna do soon, you said, oh, we should have recorded that conversation. And I thought the same thing. And and I
I don't even remember now what we had been talking about. Right? There were a host of things I as I remember.
I don't believe that the topic is important, but I've been, I've spent a lot of my week ruminating on it on something, and I was wondering if, like, you wouldn't mind recording this conversation that we have about it. So Sure. Okay. Jenny has no idea what I'm gonna say yet, just so you all know.
I don't. I usually don't.
I'm I I usually don't either, Jenny. So so I I hope people can stick for a minute because what this conversation is gonna be really about is just taking some sort of control of your self and your outcomes and the things that end up happening for your health, but I'm gonna take a sort of circuitous route to the message if if people don't mind. So if you like the podcast and you like Jenny, hold on for a second because I think this conversation will get you somewhere.
Not if they like you, just if they like me.
Well, what did we learn? I'm just kidding. What did no. What did we learn this week in the I I've been making, my bad reviews.
Little musical things?
My I've been turning my bad reviews into musicals. So there's this one that's just so glowing. It's just like the content's great and but I'll put it right here so people can hear it. And then at the end, they're just like, and the host sucks. I was like, it's okay.
Podcast is my idea, but whatever. Like It's okay. I'm
so sorry.
It's okay. So, anyway, why did I end up I guess it's as good a place to jump in. It's any like, why am I turning my bad reviews into musicals? One, I'm enjoying Do It. I'm having fun.
When social media stopped being a place you went4:02
But two, I am stuck in a a situation that we're all stuck in. And and and I'd like I'd like for us not to be stuck in it, but as I stood and thought about it today for what seems like the fifth day in a row, I thought, oh gosh. This isn't a thing anyone's gonna fix. And do I just give up and lean into it? So I guess what I mean by that is I don't wanna be boring for people, but there was a time where, like, social media meant a place where people put things and you went and got them if you were interested in knowing more about it.
And Sure. And now social media is a thing that you turn on and it force feeds you something. Right? And it's it's obviously tuned and learned to force feed you whatever your your base desires are or fears or or what have you. That's true.
And and the people will
And feed you. I think that's a really important distinction to make here. It's it feeds you. Right? Like, if I say socks and I don't mention a brand here, I will probably now find feeds about particular types of socks, athletic socks, socks for yoga.
It feeds you.
It's gonna happen to you so quickly. And and but that's still a basic conversation around this. Like, what I'm what I'm telling you is that as a person who uses Apple podcasts or Facebook or Instagram to try to get me all I'm trying to do is remind you that I have a podcast. Right? That's really what it is.
Right.
Now my podcast doesn't charge you money. Most other things are asking money from you. And and we've gone from a culture of, hey. I have this thing. Here it is if you'd like to know about it, to I'm gonna make you afraid or scared or excited or happy and then try to take $15 from you or try to take $20 from you or 99 just $99.
Your TikTok shop has this thing here. I actually saw a guy the other day selling a pond, fountain. I don't know how many people own ponds, but I guess more than I think. And, and and I was like, what what in the hell is this? And so what you don't realize if you're just a person out there living your life is that there is an entire, like, parasite culture of people trying to figure out how to get your money from you constantly.
Right? And that took over social media. And so now that's how social media works. Anybody you're watching on your feed is trying to build up enough of a following to charge somebody money for something, Either you or a company that will use them to get you to look at their thing. Now listen.
I sell ads on a podcast, and there's an argument to be made that I'm doing the very same thing. But you can skip those ads. And I don't spend the entire time in the content beating you over the head with it. I don't start my content with literal psychological mechanisms to get you to be scared or whatever. Like, we just start talking, and hopefully, you find something in it.
And people have been learning through storytelling for the history of man. And and now suddenly, the shift has happened. And I I'm so I don't wanna sound pompous, but I'm very afraid that there's an entire generation of people, not just young, by the way, but old, who are now just being fed, I think, what might be the equivalent of, like, empty calories for your attention. Like, peep True. Yeah.
People and and when we focus it specifically on the diabetes stuff, it it it makes me sad, because I'm not trying to take your money. I do need you to click on the links to keep the whole thing going, but but that's neither here nor there. It'll probably keep going whether you do that or not. I really just and I think if you've heard Jenny long enough, you know, like, we really just would like you to have an easier, healthier, happier life and not struggle so
much. Correct.
But we've gone from a position of I can put that stuff out in the world and you will go find it to I can't get it to you because I'm unwilling to use these mechanisms.
Because you're being blocked, essentially.
I don't wanna listen. Here they are. Like, the Kontoor Next Gen blood glucose meter is sponsoring this episode of the Juice Box podcast, and it is entirely possible that it is less expensive in cash than you are paying right now for your meter through your insurance company. That's right. If you go to my link, contournext.com/juicebox, you're gonna find links to Walmart, Amazon, Walgreens, CVS, Rite Aid, Kroger, Meijer.
You could be paying more right now through your insurance for your test strips and meter than you would pay through my link for the Contour Next Gen and Contour Next Test strips in cash. What am I saying? My link may be cheaper out of your pocket than you are paying right now even with your insurance. And I don't know which meter you have on you right now. I can't say that.
But what I can say for sure is that the Kontoor Next Gen meter is accurate. It is reliable, and it is the meter that we've been using for years. Kontoornext.com/juicebox. And if you already have a contour meter and you're buying test strips, doing so through my link will help support the podcast. Let's be honest.
Most of us would love to spend less time thinking about diabetes. That's exactly what MiniMed had in mind with the new MiniMed Flex system. It's small and sleek, you can control it from an app, and it uses the trusted smart guard technology that automatically adjusts insulin every five minutes. Less juggling, less micromanaging, more freedom. That's the MiniMed Flex system available now at minimed.com/juicebox.
There are links in the show notes and links at juiceboxpodcast.com to Contour, MiniMed, and to all the sponsors. When you click on my links, you're supporting the podcast and helping to keep it free and plentiful. Curiosity gap. You withhold key information. You won't believe what happened next.
The mechanics: hooks, loops, and outrage10:39
Number seven will shock you. Opening loops, starting a story, and cutting it off before the payoff. Oh my god. I was up the other day and and then the video starts. FOMO urgency before it's deleted.
This is the last chance countdown timers. Outrage bait, framing anything from a scandal, betrayal, destroying owning something, false personalization. This is why you are tired all the time. Like, that kind of stuff. All Jenny's not on social media.
Jenny, the the way some people are. And maybe you're listening and you're not either. This I could literally end up talking we might just be talking to other like minded people. Mhmm. Like, right, they might just be like, oh my god.
I'm seeing this too. But if you're trapped in that, you're I'm never gonna get the thing to you. And now I'm seeing people in the diabetes community, they're try they're using they're using these social media, like, tricks to try to get you to look at them. But Sure. You can't explain you can't explain foot on the floor in in four seconds.
And and so, I mean, I don't know what to tell you. Like, we started off with two minute videos, then it went down to one minute videos. Now it's thirty seconds. And if you look at the average rate that people watch an Instagram reel, Jenny, it's three seconds. Six seconds is a long watch on a reel.
Mhmm. And the only ones that people sit on are whatever the thing is that lights your brain up. People beating each other up in the parking lot, car chases, arguing, you know, pitting people against each other. Whatever your whatever your, I guess, kink is online. Like, those are the only things where people watch for more than three to six seconds.
And so can't I can't help you in six seconds. You you know what I mean? I don't know how.
Just I can't either. I can't boil it down to a two second snippet because there's there's more to it. I mean, this isn't six seconds of throw these things in a bowl and microwave it for 90 seconds, and here's your recipe. That that's that's not what this is.
Yeah. I and I'm not go I I'm not going to. I'm not willing to. I'm not able to do something visual to trick you into watching while we're talking over top of it, and it's not going to work anyway. Like like in the end, the algorithm, it I know this sounds, I've heard people say this before, and it sounds paranoid.
Like, you know, I I back in the day, like, in the last five or six years, you'd hear, like, YouTube creators talk about being shadow banned by the platform. Like, I said a word and now I can't get my video out somewhere or something like that. It's a 100% true. Mhmm. My stuff I mean, guys, I I've I've put through really hard work 86,000 active people in a in a private Facebook group.
Mhmm. They're and if you listen to people about it, they they think it's wonderful. I actually did a I've I've I'm in the middle of making a survey now that now 200 people responded to it. And if you could see the the responses back from the survey, they're absolutely heartwarming. And people talk about that Facebook group is how valuable it is.
But if I, the guy who owns and runs the Facebook group, post something in it, I can't reach anybody. Like, no at this point, me if I got to a thousand of you, that would be really astonishing.
So Can you be a pretend person?
I'm sure I could,
but you think Not not that you pretend. But do you know what I mean? It's like, do you have to almost have your wife post the stuff that you want people to see in order for it to get seen? Like, that's sad.
Isn't that insane?
Really, really sad that you can't be you.
Do you know what I do? Do sometimes I I I have AI make a photo of a very handsome dark haired man in his thirties with a beard holding a pretty cat
And no shirt on.
And no shirt on. And then I post diabetes content underneath of it. And that actually works to some degree. And it it what it does is it attracts it it attracts people yelling about me using AI. Right?
It attracts it attracts I I'm sorry to say sometimes women who don't realize it's not a real photo who are like, hey. More of this, please. And I'm like Right. It's a computer drawing, but I'm
gonna tell you to check your feet, but, hey. Look at the picture of me too.
Could you please put your insulin in fifteen minutes before you eat? Like, okay.
Here's a handsome picture of a cute cat with me.
And so so, anyway, there's you know, that still only will draw maybe seven to 15,000 views of 86,000 people
Right.
Of whom which 40,000 a day are active. Like, it's an astonishing act. But my point is that what Facebook doesn't want, and this is where I'll end up sounding paranoid, but please trust me. I've been doing this for a long time. It's true.
Is that if I it used to be if I left a link, I could be like, hey. I wrote a blog or this this episode will be helpful for you. Here's a link or hey. You're newly diagnosed. Go check out the Bold Beginnings series at bold you know, this, that would be fine.
And you could see that link driving clicks. Then Facebook decided that they're not really a community. Facebook is an AI company that sells ads, and they use the veil of that community to keep people there that they are you are their customers and they are selling you advertisers, but they don't Mhmm. The advertisements. They don't sell them to you.
They give them to you. They sell the give to the advertiser. And so you they do not want you to leave Facebook. Unless you're leaving to buy something, you are not leaving Facebook. So if I leave them a link to something, it will it kills the post.
It won't let it be seen by anybody. So then people started to learn, well, I'll just put the link in the comments. Facebook figured that out and now it squelches that. So then people are like, okay. Well, I won't put the link in.
I'll just creatively write to you about what it is and you'll have to read it and infer and then go find the thing. But now the algorithm's so good, it sniffs out that you're trying to get them to leave, and it squelches anything you write that would indicate that you're asking a person to leave that platform. Now if you want, you're completely able to pay Facebook so that they'll show your post to people. So as soon as I post something as a creator, it says to me, would you like to boost this post? Then you can click on a button and pay them.
Pay them.
And then they'll show it to people, but they won't show it to the people in the Facebook group. They'll show it to people similar to like, you can't put up you can't pay to boost a post inside of a group only on a page. And it's Jenny
Notice that I'm, like, not Staring at I'm Yeah. Yeah. I'm sort of, like, dumbfounded by by all of this. It's manipulation.
Everyone you're all being manipulated. And if I tell you that, it's it's not gonna matter. I've watched bigger people with bigger followings try to tell you this over the last five or six years. People people it it becomes common very quickly. You don't realize how fast this is just what you accept now, and so there's no fighting against it.
I I I'm gonna tell you that this is gonna sound ridiculous for a second, but I saw, The Odyssey the other night.
Oh, yeah.
Yeah. It was good. I liked it a lot.
Was it good?
I I really did enjoy it. Yeah. Now I wanna be clear. I've never read. Is it a poem?
Is it a store? I've never read The Odyssey. Okay?
So Oh, really?
No. I'm sure I should, but I haven't. So I don't know how much, like, poetic license is in the movie about, like, themes or or outcomes or desires. But what I took away from The Odyssey was we had this golden city that worked where people just followed a basic rule and everyone was happy and cared for, and then slowly people got away from that. And then you look up a couple generations later and everybody is just mired in whatever is easy and and no one knows that's what's happening anymore.
And and I was like, okay. I I get it. And and so, you know, Odysseus is the one who comes up with the idea of putting the people in the horse. But then he realizes that that he shouldn't have done that. He that he that he tricked those people.
He told them they were safe, and then he murdered them when they weren't looking. And and he's devastated that he fell into this thing too, but as he was doing it, he thought he he thought it was righteous. He thought he was doing it for the right reasons. Always and what the hell does this have to do with diabetes? I don't have a pathway to you all anymore.
Six seconds versus the real answer20:11
Well, I think what you're getting at is that there's no way to sneak in.
I can't get
to There there's no sneaking. Nope. Right? And and you have you have a much better reason for wanting to sneak than he clearly did. Like, you wanna kill people.
You actually wanna try to keep them alive. But this is a sad thing that there's no way around what online has done in this type of group.
I'm holding this free thing that I'd like for you to have if you want it. I am looking here at hundreds of responses from people that I won't bug you and and read with you, but I am gonna when this episode comes out, it'll be online at juiceboxpodcast.com/surveyresults. And you'll be able to go see the impact that the podcast has had on people living with diabetes. Right? You can go see it in their own words.
They answer their own questions. It's a very fair, like, even survey. You'll see how overwhelmingly valuable it is. And the and the podcast is free. It's not a coaching service.
I'm not gonna ask you to pay at some point. But it used to be I just just go to Facebook and say, hey. Here's the bold beginnings. It helps people. And now I'm down to I've gotta go to Ohio next week to
eighties. Do too.
Yeah. Well, the the nice part about you and I'll get to have dinner with Jenny. That'll be the nice part. The rest of it's gonna be me trying to explain to other clinicians how valuable the bowl beginning series would be for them to share with people. Right.
It's I'm already so melancholy about this trip because it's it's not gonna work, Jenny. I've been doing this for twelve years. None of this works. The only thing that works is bouncing your hair or bouncing your ass or watching somebody beat the hell out of somebody in a Kroger. Like, that's the only way you can don't laugh.
That's the only way social media works now. It's click.
Yeah. It's clickable by visual excitement despite that excitement not being appropriate most of the time. Yeah. It's exciting to watch.
Not just appropriate, but I did something to prep for this conversation earlier today. I purposefully I know I never prep. Okay? I purposefully sat for twenty minutes and scrolled TikTok and Instagram Reels so that I could tell you with honesty, I have absolutely no idea what I saw during those twenty minutes. I have no recollection of it.
Like, if you knew what I saw and started to ask, I could not answer one question.
Well, I I think as a bigger translation, what fits is how we have to reach people in the context of a time frame that our brains have now adapted truly to less attention span. Right? We have we have more people with what is called attention deficit. We've got more issues there, and a lot of it does I mean, if you've looked at any of the information about devices
Mhmm.
And attention span and the problems that have come since truly since the advent of carrying your little small computer around in your pocket and calling it a phone. Right? Because it's it's not a phone. Yeah. It really isn't.
You have your laptop in your pocket all the time. Mhmm. And in that, it even boils down to now attention span on tests that kids get into college and higher institutions of learning with. They have had to change tests and the way that kids answer the questions on the tests because no longer can an 18 or younger going into college take the big exam and read two pages worth of information and then answer 10 to 15 questions. Oh, no.
Because their attention can't keep together all that information. They now have to break that paragraph down into small little segments with maybe one question about each segment, or the attention is gone Mhmm. And they fail. Yeah. That is sad.
You don't have the attention because someone sold it to somebody. And and then I'm I'm it's there's there's I if there's a thing called the attention economy. Like, there are people that their entire job is trying to buy your your seconds from you. Like, find a way to get you to look at a thing for a second. By the way, it most of you be like, oh, that doesn't work on me.
I don't buy that stuff. It's probably true. Most of those ads probably run by you, and you don't and you don't go buy a a new pair of headphones or, you know, a swimming Sure. Or something. But the point is is that you looked.
And because you looked, the person who sold your eyes to the advertiser can charge the advertiser. And the advertiser will learn eventually that this didn't work for them either, but they'll still spend all their money trying to get involved. It's it's I there is such an incredible vat vat of nothingness going on in this circle. It's it's I make a thing. I'm trying to get to you.
I don't have a path to you, so I go find a guy who's willing to say something stupid on TikTok, and then he'll be my path to you. You still won't buy my thing, but it was my only option. So that didn't work, so I'll get 50 people to do something stupid. And then I'll do a it used to just be you buy an ad on something that everybody watched, and then that was a fair chance for you to tell people about your thing. That that doesn't work now either.
What gets rewarded in the diabetes feed26:06
But it was also because the ad really like, who doesn't remember the I'm sorry. This is probably dating me. But the Band Aid jingle. Right? Or Bayer aspirin or the Kool Aid man.
Correct? Yeah. They stuck because they were they were lengthy.
They were too
and you spent time with it. And that's what when I you know, as I'm talking about, like, even exams, it translates into the whole context of just diabetes education and the fact that we have. I mean, what? We boiled things down into the small sips to try to be able to provide tiny little snippets that were condensed to the very major points that people should be using in today's life with diabetes.
And they're still good, and they work. But they're
too they're too long. You and you but you have you can't boil this down any further. Right. You can't. And you have to also then translate that into you have to you have to apply what you have learned by listening.
And the application then is very difficult because the concepts are not rocket science, but in today's world of learning something and then translating it to use Right. Means you like, you have to grab it and understand it. And today's world of scrolling, it's a quick snippet of entertainment. It's not that you're going to learn how to put a bow tie on your cute little dog. I mean, it was a cute little video, but, like, you're not learning anything from that.
Mhmm. So it's a your brain filters it through and and has lost the ability to file the right information in the right place to pull it out and use it later.
To your point earlier, I'm I'm spitballing here, but a TV show called Cheers, I think, came on in the early eighties, which would have been when I was in my single digits still. Like Yeah. Yeah. Maybe I was 10. Okay?
Uh-huh. And I think it ran for a decade. I didn't particularly like the show. It wasn't for me. It was in the background.
My parents watched it. Right? I have not seen it since then. I'm not looking at it now. Ready?
Taking a break from all your. Wouldn't you like to get away? Sometimes you wanna go. I know the goddamn theme song to that TV show. Right?
I can sing the Almond Joy song because of the Charlie Brown Almond Joy's got Yeah. Mounds don't.
Mounds don't.
Right. Right. And I don't eat candy with nuts in it. But it was on the Charlie Brown Halloween thing, which, by the way, you could only watch for one half an hour once a year Yes. On CBS.
I even know that it was on CBS.
Yes. Okay. It's the great pumpkin, Charlie Brown. Come on.
Yes. Okay. So there's an argument to be made that my brain is full of that, but at least I still know it. I don't know one thing I scrolled a half an hour ago. I just interviewed a really big TikToker who I like about type one diabetes, and she says during the interview, I wish I had better attention span.
But this is how this thing works.
And Mhmm.
If I want to have a thing, then I have to do it this way. And what I'm telling you is is that when it's wrapped around your diabetes, I get it. I get that the companies are leaning into it because they've lost the pathway to you as well, they think. Okay? Or they're trying everything.
I get that the creators are trying to make the content to attract the guy, to give them the ad, and I understand what everyone's doing. I don't have a problem with people trying to live. What I'm telling you is is that all you take away from it is the hard stuff. The the the Right. Right?
Sorry. I was just attacked by a
Oh, no. I just I heard I don't usually hear that, and I heard that too.
She just launched herself across. I'm sorry. I have a yellow tree monitor in a cage. She just launched herself across the neck. Anyway, so she she really did.
So so they're busy making the only stuff that works. I already went over with you. The only stuff that works is, like, rage and everything. So it's like it's either, like, hey. The cure is coming.
So you all get real excited about the Elodon trial and get whipped up into a fervor, which, by the way, I think is awesome and will not be curing any of you soon. Okay?
Soon. Right. Right.
Okay. And so or it's they'll just take the opposite side of it. Like, everybody's talking about a cure. This is ridiculous. Right?
We're not gonna get cured and then just make you mad about that. You know why we're not gonna get cured, Jenny? It's because of big pharma. They're hiding all your blah blah blah. Alright.
Like so then they'll go that way. Or it's, oh my god. This device fell off again. Oh, thank god you had your phone to film the one time your device fell off this week so that you can go on TikTok and make a big goddamn deal about it. Alright?
Like Mhmm. Or, you know, I hate this pump. It doesn't work. Yes. It does.
You don't know how to use it. Okay. Like, great. And I Jenny, I would be happy to tell you how, but we can't do it in six goddamn seconds. And it's making me fucking crazy, Jenny.
“You have to apply it”31:10
Can you see that? Oh my god. I'm out
of my mind. We've had these very similar off off recording kind of conversations, the frustration of I can teach you all the information. I really can, but you have to apply it. You have to apply what we've done as the basics of getting started. Whether you're MDI or on a pump, you have to apply it, and then you have to remember what we talked about and keep applying it.
And, yes, situations are going to change, but the basics don't change.
And the basics are pretty basic. Like, sit to sit down and listen for like, I I try to make this point all the time. Like, that pro tip series, I can listen. From people's feedback, listen to it, half ass understand it, a one c in the sixes. Okay?
Like, it's just it's you know, you talk to people one on one. It's the same idea. But when I get a bad review about it, the review is like, oh my god. It's so long. I can't listen to all that.
Oh, well, then just live your whole goddamn life with a nine a one c then, I guess. And and then and complain to me that I didn't make the thing short enough for you. Like That
it wasn't good enough for yeah.
It it's not how it works. And then if I say something like that, they go, oh, he's so obnoxious. He's pompous. He said elitist. He said, no.
You're an idiot. Like like, just listen for goddamn it. Life's not that goddamn hard, Jenny. I'm going crazy this week. I'm out there making stupid songs about which I do find enjoyable and and but it's just to try to drag one person.
And by the way, it won't work either. Nothing I've done for a decade works because I'm not willing to lean into this.
It does. I wouldn't say that. It's not true.
Listen. I
know. Have been considerably helped. Obviously, your survey proves that. Right? But So you can't.
Why Jenny gives it away free33:04
I understand. I understand. It's not enough people. It's not enough. And that's what I wanted to say is that you're not you're not really noting this to the people that clearly have given much positive feedback about it.
It's really the fact that both I agree. And part of the reason I've told you so many times that I really have been happy to be able to provide this in a way that's free for everybody is because I cannot replicate myself, and I can't reach the thousands upon thousands of people around the world. There's not enough of my time. I just I can't talk to everybody. So this is a way to be able to provide that to to donate it, right Yeah.
In a way that is digestible. And I think that it quite honestly is. I mean, even my boys have as I've been reviewing some of the ones that I listen to, they listen, and they understand. It's not I mean, I don't have, like, 25 year old children who are, like, college educated. Right?
I mean, they're smart kids, but they're still, like, kid. Right?
Mhmm.
So it's understandable information, and where you're coming from is you really just want to get the information to the people that you feel like it's missing.
Yeah. Well
That's the frustrating part.
It it and and to then watch that attention economy steal your attention using your diabetes and then tell you how dire and hopeless it is, and then you agree to that and then go on your way and never find better is really it's just it's unnecessary. Right? You know?
Or that it feeds you more information about yet another device or another thing when truly it boils down to learning to use the tools that you actually have.
Mhmm.
Not being fed information about, oh, this trial, and did you see that this person did this, and this person, you know, had this happened? Like, it keeps it feeds you down a tunnel of more and more and more that leads you away from the basic thing that you really wanted to know was, like, how do I pre bolus? Well, you got, like, six tunnels that it's gonna, like, translate you to watching something else
Yeah.
Potentially relative to that. But eventually, you're gonna be watching cats play on the floor.
Yeah. And I don't dislike that. Also, I enjoy watching somebody beat somebody up in a Target once in a while. I'm not saying otherwise. Listen, Jenny.
Between you and I, I don't think there's anything better than watching a criminal be tased. I think it's fantastic. I Like Four
of them should be tased.
Actually doing something wrong and then the taser hits them and they stiffen up and fall over. I go, that's hilarious. Okay. So I've been
Mine is usually good for them.
I'm I'm I'm with you. I'm with everybody on that. Okay? But, like, it's it's I I don't know. I really don't know what to say.
Friends for Life was overwhelmed by diabetes influencers this year. Like, people just making, like, banging You mentioned that. Video content up to come out and to, like, yell and scream into a phone, and it's all cool. Like, it's nice even. And and I heard people say, oh, I love that person.
I'm like, that's great. I I think that's fantastic. But the person that told me they love that person is also looking at me going, I don't understand why my kid's low all the time. Right.
And I do. I do.
I understand why they're low all the time. Mhmm. We could tell you, or you could watch that more, I guess. I don't know what to say. You know?
But it's a it's a point to reference that there are quality places to get your information from, and this is by no means downgrading any influencer at all. No. I I really like them
all. Yeah.
I don't really look at them, so I I don't even know their names.
I enjoy my time with them. So, you know They
could pass me on the street, and I have I would have no idea who the people are truly. But the difference is that as an influencer, you should be, and I think you told several of them that you talked to, you should be trying to make a difference, not just look pretty on camera or not just put another device in a new location that, oh goodness. It's not approved, but gosh. It works really well here. That okay.
It might help somebody, but in the end, the goal should be that as an influencer, you are teaching.
Yeah. But you
You are not just looking pretty.
And on those two platforms, though, you are not gonna get the kind of clicks that are gonna get somebody to give you money for an ad. That's not how it works. It's just it's listen. I I have research here that because I I took your point. I am I am upset, but at the same time, hey, guys.
This is Scott. I'm just jumping in for a second to say that if you've made it this far into this episode and you're looking for help, the pro tip series, bold beginnings, Omnipod five pro tip, all the other stuff that's available through the Juice Box podcast, you can go through easily at juiceboxpodcast.com. Go into the menu. It's a couple little, like, dashes in the top right of your screen. Go to series.
Everything's free. It's complete. It's not a hidden coaching service or anything like that. Everything there is what you need top to bottom. It's absolutely free.
I would love for you to have it. Enjoy it. Do whatever you need to do with it. Let me get you back to the conversation. About sixty five thousand new people are diagnosed a year.
Okay. So you can give the number. There's two million people with type one diabetes in The US or somewhere near that. And most of those people this is part of my point. Most of those people have found their their level.
They're either they're either running around with a five or a six or a seven or an eight or a nine or a 10 or 11 or 12 or 13 or 14, they're probably not gonna shift. Most people aren't gonna shift from where they are. They have a chance to, but there's a lot of confounding things that get in the way. Right? So your best chance to help people is when they're newly diagnosed.
Yes. Okay. Hundred percent.
A million percent. And about sixty five thousand people a year are newly diagnosed is the is the rough number right now. My data tells me that I reach between eight and twelve percent of those people, which is really astonishing and It is. It's impressive. But I don't know how everyone else's brain works because I show that to people privately who are, like, behind the scenes.
They go, Scott, no one's doing that. You're the only one doing that. And I go, yeah. But did you are you not reading that we didn't reach eighty eight percent of the newly diagnosed people? Like, is that not how you see it?
Because it's how it feels to me. You know? And if ten percent of them are on TikTok right now getting super excited that a cure is coming, well, then that's ten percent of people who might not take great care of themselves because they think, ah, it doesn't matter. Like, I'm gonna go to Chicago one day and they'll shoot me up with this thing and it'll be fine. Or or or, you know, I or how is it possible that I'm seeing somebody today, an influencer just yesterday?
Because now I'm paying attention to it trying to figure out what it is telling me like, oh my god. I just learned this amazing thing. I'm microdosing my GLP. We've been talking about that for four years, and she's talking about it as if it's just a thing that
Reviews, and the ones that sting40:12
happened today.
She just figured it out. And it's nice because she's now sharing it with people, and I hope she does. Like but when I looked at the page and I looked at what was going on, yes, she's sharing it, and, hopefully, that will help people. But I have a critical eye for this. What she's trying to do is build up enough of a following that one of these companies is gonna come to
her Click in.
And make her an influence her. Like, that's and and, again, that's how this works now. It's fine, but you alluded to it. When I met people in person at this event, and a lot of them came up to me and asked, like, what do you think I should do? Because I'm oddly enough, like, I I don't know what it is I am and that's guess I'm an old guy who's been doing it a long time.
And I was like, please just try to help people. Like, I gave them the most honest advice I could give them. I said, you are really young and you're adorable and I see why these videos work, but another young adorable person will come along and take this from you inside of six to nine months. And they'll then think they're going to make a bunch of money doing this. You think you're going to, and you've made a couple of bucks now, so you're getting excited about it.
But then the next person will come in, they'll get popular. The algorithm will push them up. The companies will see them as a cheaper buy than you, and you will be gone like that. And the people who have been watching you, and I hate to break this to you, have overwhelmingly no idea who you are.
Right.
Like, there's because they don't look at you long enough. You know what I mean?
Right. Yeah. The most I mean, most people doing this, whether it's on whatever platform they're using, are not going to be mister beast.
No. It's not happening.
Like, you're going to get to that type of plate. Maybe I don't even know percent. Like, what percent might? I can't say that nobody will.
No. Somebody's going to.
Yeah. It changes enough, and this isn't just you could do everything that you can possibly do, but diabetes isn't really, like
It's not fun. It yeah. It doesn't lend it doesn't lend itself to this. I've been for years going, like, why are you trying to adapt TikTok trends to diabetes? This is freaking ridiculous.
Like, what Right. It'll get you eyes, but it won't I I don't know.
Like Right.
You guys don't really like, this might sound like complaining. Trust me. I'm doing fine. I'm not like, I'll keep making this podcast as long as I want to. I'll have advertisers the whole time.
I'll have a lot of people listening. This is not the thing I'm talking about. I'm not I'm not a person who's, like, you know, withering away and and complaining that the world changed from under me. No. I got it.
I'm I'm good. But, like, but for ever but for those other 88 of those people, like, I've just I've interviewed you ten years from now, and you're gonna say, I can't believe nobody told me this. I lost ten years of my life. I'm getting injections in my eyes now. I can't feel my foot.
Like, you're gonna tell me those goddamn stories, and all it's gonna make me think was I had the answer for you, and it was free, and it would have taken you about fifteen to twenty hours to figure out. And it's fucking upsetting, Jenny.
Well Yeah. And I I think I don't know. This was probably in with one of the discussions we had after you went to
One of the most?
It it what I think it was the scientific sessions.
Oh, ADA too. That pissed me off to no end. Yeah. Yeah. Sorry.
But we had a discussion, and I brought up what I've seen for years and years. And I don't I don't tend to go to the to the conferences terribly often
Mhmm.
Because what I end up seeing is a lot of smart talking people bringing up and discussing research or their studies and the endpoints of the studies proving very valuable Mhmm. But it not getting translated, and it goes into what you're talking about missing that, like, 88% of people. Right? Yeah. We got this information.
This research proved this. This study proved that we could improve outcomes considerably in this avenue with people with diabetes. Great. But why have I never heard of that? And I consider myself fairly Like, okay.
Yeah. Yeah. In the diabetes realm. Right? I mean, don't know everything.
I don't I don't say that, but I know a lot. And why have I never heard of this? And you did this study three years ago, and now you're presenting the information on it. So my frustration with outside of networking and getting to know some really super cool people and what they're doing and how they're applying it and their outcomes definitely being translated into practice. The grand majority of the information that's shared and is my frustration is that it it looks pretty on paper, and it looks awesome to talk about.
But it in the grand majority of education systems for diabetes educators and endocrine practices, it never ever gets there. So then people come, you know, to your Facebook group or whatever and start listening. They send you a message. It's like, why in thirty years has nobody told me this? It's because the information was there.
Yeah.
But it never got moved into the clinical realm to say, hey. This these are the new practice pearls. It has to be applied. So we have to start like, it's an institutional change.
Right.
In my opinion, it truly is the whole entire way that we educate has to change so that we have more educators like the small group that I have a chance to work with. I love my colleagues. They're phenomenal, and I wish there were more of the way that we do what we do. Yeah. Because we do make a difference.
But, again, we make a a such a small percentage of the people that I really want to help.
Right. I I don't think I've ever sat with a person personally who I haven't been able to help them get to a better situation.
Right.
But I can't to your point, I can't sit with them either, which is where my frustration comes because I found a way to reach a lot of them, but not enough of them. Your point is so, so the way I use I'm usually more flippant. I usually say nothing makes me more upset than to watch a bunch of smart people congratulating each other on LinkedIn about a bunch of stuff that's never actually gonna reach anybody. Yeah. We have a study that says this.
Yeah. Can you put it into practice? Well, I mean, that's harder. Yeah. Nice.
Awesome. That's great. Yeah. So I have I have a survey that has now gotten 200 people back. I showed it to a person in the industry who's a real helper, who's invented something really valuable for people and is and knows that side of, like, the business side of diabetes, looked at this and said, I brought something to market with fewer than 200 people in a survey.
Taking control of your own outcomes47:16
Like, he's like he's like, 200 people's a lot of people. I said, it's only been a week. I'll probably end up with a thousand eventually. And he goes, if you get a thousand people to answer this survey, that would be astonishing. No one does that.
I'm like I'm like, are you serious? Like, yeah. Most of the data is not drawn from even that many people. I'm like, wait a minute. That doesn't make any sense.
And in these 200 people, Jenny, so far, what I've learned is the median a one c change from listening to the podcast is 1.2 points.
I was gonna guess one and a
half. But In of the 190 people who have answered the survey so far, a 122 of them have answered enough of the survey to give me this number. So it this is only based on a 122 of them. Those 122 people combined have had a reduction of 235 a one c points. It's 76 lot.
Yeah. Yeah. 79%, their time and range went up. 69% decrease in severe lows. And that's the kind of data that if I showed that to those smart people, they'd go, oh, that's a podcast.
No. I'm the guy that figured out how to get to them. Smart, pompous. And I'm then they call me pompous and mother and I get called obnoxious. It's not obnoxious to sit around pontificating about all the things we figured out that we can't figure out how to get to anybody, but I figured out how to do it, and I'm obnoxious for talking to them.
I'm like, I can't so there's two different worlds there. And if you if you don't see that the trickle down is never gonna trickle down, that's it. It's it's it's it's not gonna be told to you by somebody who's looking cute on TikTok and telling you to be scared or excited. That's not gonna work. You have to have these conversations, and it has to be with somebody who knows how to communicate and explain it to you in a way that will make sense quickly.
For good or bad, it's me. Okay? And Jenny and people that come on this podcast. This is how it works. My point of starting this whole conversation is is, like, if you're struggling right now, just go listen to those damn series.
They'll help you. But stop telling me you talk too much. I don't like the way you do this. I wish it was like this. I I don't care what you wish.
It works. Look at the results of the survey. Go listen. Feel better. Go on your way.
Like, I'm not even asking them to hang around and keep listening. Just feel better and leave. It's fine with me. No.
Well, that's why I like some you know, you've had other you've had discussions with other clinical minded people. Right? You've had other guests who are endocrinologists. You've had other CDCES on right? You've had nurses.
You've had other dietitians. You've talked to many other who do what I wish could be more of a true practice to, like, to put it into practice a 100% as a rule of thumb.
Yeah. There are a lot of people doing it.
It's that they they have the information. They get to talk to people. But in most brick and mortar, it's a time frame constraint. Yeah. And so what should happen is they should be able to say, okay.
We've started with this concept of pre bolus. If you want more in your own time here, go and listen. Here's a small sips. Here's a a pro tip. Here is this.
It should be a rip off page. Mhmm. If I was doing something, it'll be a rip off page in office that says, this will be your follow-up to the beginning of the discussion that we had today, and this will back it up. And next time we meet, we'll talk more about it, or goodness, you might end up listening to more of these episodes, and maybe you've gotten farther by the next time we have the ability to have an insurance covered
Yeah.
Like, visit. Right? But, I mean, if I could, that's the practice that I would change in terms of whenever somebody ends up being a diabetes educator
Mhmm.
They get a sheet that says, you know what you know, and for additional assistance for your patients that you wanna see good outcomes for, here. Yeah. Give them this. This is the supporting information in a really easy to understand way. Right?
But is that gonna happen? Not unless something big happens within the accreditation system.
Right. Yeah. And it's it's listen. The academic side of it is never going to, like, see this part of it. Like, it's it's people talk about how things should be.
Mhmm. I talk about how they are. Right? Like, you and and I listen. I would make thirty second content for you if I thought it could work, but it's not going to.
Like, I could I could maybe make thirty second content for you that would drive you back to other content, but is a person who's watching something three, six, ten seconds at a time actually gonna go listen to something that's ten minutes long? I don't think so. I mean, I've done it six ways from Sunday. There's a twenty one day mindfulness series that walks you through it. Would you like to try that?
Plenty of coaching services will sell you that for $3,000. Mine's free. Juiceboxpodcast.com/hub. Go ahead. If that's how you learn, do it that way.
Do do you wanna read it? Juiceboxpodcast.com/library. Go read all the transcripts. I don't care. I've done everything I can do short of I I I recently watched somebody who I have been from afar watching for at least five to seven years try earnestly to put good content out, and it never catches for them.
And recently, I watched them fall into the I'm just gonna yell and scream about the about the cure, and it's working. They're they're they're getting more views.
And I'm sure.
And I'm just like I'm so I feel sad for that person. I I because I knew I could see what they were trying to do, and it was a good thing. And they just gave up and just it feels like they went to the dark side almost. And I'm sure they don't feel that way about it, or maybe they do. I have no idea.
But every time I think about doing it, it makes me nauseous. Like, listen. This is my latest review for the podcast. Refreshing and unique. I've been living with t one d for almost fifty years, and I thought I knew everything that I needed to know.
I was wrong. My wife pointed me to this podcast about three years ago about after hearing about it from a friend of hers that she worked with at an elementary school. I started out slow. It was hit or miss with episodes here and there, but quickly became hooked, and I've learned so much more about how to make educated decisions about changing my pump settings. The tools on the website are invaluable.
I can't wait for the next episode to come out. Scott understands this disease like no nondiabetic I've ever met. The Facebook group is awesome. This is something that the diabetes community has needed for decades. It's been around for decades.
I'm glad that this person found it, but I've been doing this already. You scroll down through these reviews. It will not take you long to get to I can't get past the obnoxious host. Let's say I am obnoxious. Let's just give it away for a second.
The person thinks I'm obnoxious. Let's just say they're right. Shut up and listen to the thing and feel better. Like, what do you do? Like, it's like telling me, like it's like your doctor's Or yeah.
I would actually say to those people, read the transcript.
Yeah. Yeah. I'm sure I'm not obnoxious in reading.
Read the read the transcript if you can't get around the way that somebody breathes or sneezes during or drinks their water during or whatever it is. Just read the transcript because the information you need is there. And if you know how to summarize or skim, you're gonna pull the information the way that you need it, and you never have to listen to the annoying obnoxious person.
You don't have to listen to how the the horror that is me. It's okay. By the way, I read that to my wife. She's like, she has a point. That is funny.
But but my my point isn't that I'm great or that people think that I'm obnoxious or wrong. My point is if your doctor tells you you need more protein, don't tell me you're not hungry for chicken. Just shut up and eat it. Okay? Like like, you you you can't keep telling me all the things that are wrong and the reasons why I can't help myself.
Like, it's it just oh, I can't. I'm too busy. I I got lost scrolling. I was doing this. I'd like to, but I I'm not the one I love is that I'm not a podcast person.
Aren't you? You how can you send me a note and say, hey. My a one c is nine. I really need help. And I say, listen to this.
And you respond back and go, I'm not a podcast person. Well, I'm a podcaster. This is all I've got to offer you. You came to me for god's sakes. What a bizarre reply.
What about a review that says he talks it's a fucking podcast, Jenny. What am I supposed to do? Not talk. What would that be? Here's what a podcast is where nobody talks.
You having fun? Just I I know. I know, Jenny. I'm sorry. I'm not mad.
I'm not even not even mad. I'm just it's been a long week. And I
It's it's more than anything. It's I think it's frustration. I am completely frustrated. No. It's frustration with, I think, a platform that doesn't support what you're trying to put out to begin with.
And then, I mean, I think that there are podcasts that I have listened to that I don't particularly love the hosts, but I do like the information enough to be able to get past it and say, okay. I I really needed this snippet or I needed that snippet. I may not listen to the whole thing, but I grab what I need out of it because I came to it because of the topic I was interested in.
Yeah.
Right? So don't as you mean, to truly say kind of what you're saying, it's like the person says, well, my a one c is here. How can you help me? Well, listen to this episode. Well, I don't like podcasts.
Nineteen hundred five stars, forty-seven ones57:19
Well, I don't know what to do for you then because you're the one that came to me. Yeah. Like, I don't know.
Listen. And in fairness of I think I have about 2,000 ratings and reviews. You know, I'm looking here. It's 1,900 of them are five stars. I think there's forty seven one star reviews.
I I I understand that it feels like it feels like I'm complaining about nothing, but it's not I'm not complaining. I'm trying to say to you all, you're being hijacked by your social media and it is stopping you from doing better, not just with this, but probably with a lot of things. And I'm you're if I say it, I'm obnoxious or I'm pompous or I'm like, oh, you're not ready to hear it. So you know? But please stop.
Like, go help yourself with something. You know?
But what you're telling is the truth, and sometimes the truth is really hard to swallow. Whereas a TikTok or whatever the platform is, it's pretty, and it makes you feel a little happy.
Yeah.
Right? About, oh, well, let me let me put this device here, and let me wear a green shirt at the same time and, you know, whatever it is. But your job and my job, it's not it's not to make it pretty because it's not. It's it's not pretty.
We do and by the way, we I think we make it interesting, and we make it understandable. And it's not, like, it's not boring. I trust me. There are plenty of people putting this content out. It is so mind numbingly boring.
Boring.
But it's right. But who? Just you drop your head through a wall. I I listen. If you Yes.
I I'll tell you the same thing I told my my little brother when I caught him smoking forty years ago. I said Mhmm. If you are okay with knowing that there are 12 guys at a boardroom table right now laughing that you bought those cigarettes
And making money off
of and making money off of you, then god bless you. Go get them. But they're stealing your life in trade for $2. Back then, was $2. I don't know what a pack of cigarettes cost anymore.
The people who wrote the algorithms59:21
And and social media is the same thing. There there are no shortage of documentaries where the people who wrote these algorithms are apologizing into the camera to society. They're like, I am so sorry. The person who figured out that when you get to the bottom of the page, if you push up one more time, it loads more, I've seen that person no more than three times apologize to society. I am so sorry I came up with doom scrolling, because that's what he came up with.
Like, it used to be you scrolled to the bottom and you were done at some point. Now it just reloads and reloads and you can't find the end of it. It's a slot machine. Like
Was that an was that an article recently in the Wall Street Journal? I feel like I read that.
He has that person has tried very hard to tell the world I shouldn't have done this. Like right? And so we're go find the one where every person who runs these platforms, their children don't have phones. Their children are not allowed on social media. Like, they they know you're being hijacked.
Right? Like Yes. They won't let their kids do it.
The iPad developer, no devices in his home for his children. None. What does that tell you?
I mean, it should tell you something pretty simple. It should tell you that, like and and even the way that so I went over how Facebook basically is really just an ad generating thing that keeps you trapped. You you're basically I don't know if you've seen Percy Jackson. I guess I'm on a Yes.
A home run. I my my boys read the books, and then we watched the movie.
I think I'm on an odyssey thing right now because they get into that bar, and they're eating the
the Oh, the lotus flower.
Lotus flower that keeps them there forever, and they don't know. Mhmm. That's what's happening to you. And but isn't that funny? Because as I watched the Odyssey, which is a writing just very old, it it's it was used then.
Right? She keeps him on that beach by eating a lotus flower, and and that's what social media is doing to you. It is keeping you a little numb and a little happy where your time just goes by and waste and waste and waste. And it used to be people would say, no one's gonna die on their deathbed happy about how much they worked. You know, I've met a lot of people who really take a lot of value out of their work.
It's actually doesn't seem to be true. You're definitely not gonna die on your deathbed excited that you saw 75 different people street fighting in the last forty five days or that somebody was able to trick you by yelling one of these lines out into a camera. Or I just interviewed Addie Taylor the other day who makes really like, she's a she's a type one TikToker. I like her a lot.
The lotus flower1:01:55
I know her
personally. She's lovely. She's like she said there's a thing now where if you pretend to put your phone down as the recording starts, it hijacks the person's brain for a second. So when you when it looks like, oh, somebody just thought, oh, I'm gonna make a video. Let me just put my phone down here.
That's a trick to get you to watch because the motion of the camera being set down makes your brain go, oh, what's happening? It's it's there's so many of those tricks that they're using to hijack you because they only have three seconds to keep you. And if they keep you long enough to get a view and they get enough views, then they're gonna have a company call them and say, hey. We'd like to give you $500 to make a video. Sure.
Life is being stolen so that person can make $500 to feed you an ad. I'm at least trying to keep you entertained or informed. Okay?
With no with with with no
I don't we don't do the, you know, I don't yell about, like, crazy things or do rage, like, baiting stuff. Or I I look at I never do rage baiting stuff. I look out there when it's happening. There were people arguing in the diabetes community recently about something. Every person making content paid attention to it and said something about it, trying to just desperately get you to look.
I did I didn't do that. I was like, I'm not I don't care about that. I'm not paying attention to this. This is ridiculous.
Nor do you probably have time to actually
Who could possibly care less? Not me for certain. And I know that the people that I reach with, you know, refreshing and unique. I'm so glad I stumbled across this. It's informative and applicable to everyday life with diabetes.
It's a lifeline for my family and everyone else's. Even this person who indicates a spoonful of sugar helps the medicine go down. This thing's fun. It's funny, and you still learn. Like, I know that that's how it catches those people, but those people are hard to find.
And so there may so there's a group of people on on socials who are not getting the help, and there's a group of people who are not on socials who you can't find. And there's it's just everyone's hidden behind some sort of a wall. And the one thing that used to work overwhelmingly was Facebook to podcasting. But Apple changed their algorithm, and Facebook changed their algorithm. And they don't it's it's like it's it's like if it's not Dax Shepard or if it's not call her daddy or, you know, or it I I don't know.
If it's not, like, famous people making a podcast, the either
not matter.
It doesn't matter. There's nothing you can do about it. Like so my whole thing and look. I I screwed myself again. I did the same thing I always do.
I tried to help you instead of helping myself. I was on here to tell you, open up your podcast app and restart your downloads because they changed the algorithm, and you probably think I'm not producing content right now. It's because of the way the algorithm works right now. You have to turn your automatic downloads back on. That's it it got shut off in a in an iOS update on purpose.
And and I used to be able to just say, hey. Look. I made an episode about this. This is what it's about. Put it on Facebook.
Twenty, forty, 50,000 people would see it, and they could go decide if they want to listen to it or not.
That's Sure.
None of that works now. So now I'm gonna go ask clinicians if they wanna tell people about it, and they're gonna say no. And then I'm gonna come back here and just churn out this podcast until my head explodes, and then I'm gonna retire. Okay? Because and I don't I hate this is the thing.
This is a joy
Well, I think for clarification too, it's not that you're you're churning it out, I think, is more
I don't mean that. Negative.
It's it's It's really more like you're you've got a drive to give people the information that's needed. Yeah. And that's important. The frustration behind it is reaching people who are never gonna see it for one reason or another. Right?
Because unless you are like, what happens I guess my question, because I don't know. What happens when you do just a Google, for example, search for podcasts about diabetes?
You're gonna get me. If you ask You come up. If you ask AI or you ask Google, you're get you're getting you're getting juice box, like,
for sure. So then at least you're gonna get directed to where the podcast is. Right? But it's not technically through social media.
I'll tell you that. I'm gonna tell you something in a second. But first, let me you were right to, like I don't churn out the podcast. I work really hard on it. I really it's a joyous job that
I have. Enjoy it.
Yeah. I real it it really is. Everything around it is set up to make me insane. Imagine if your job was baking cookies, and you loved baking cookies. And then as soon as you took the cookies out of the oven, a giant came over you and smacked you in the head and knocked the cookies on the floor.
That's me. Okay? I'm the cookie maker on the floor watching the giant step on my cookies. I I go, oh, that's a beautiful cookie. Someone will really ow.
Fuck. Cookies are smashed. That's it. Every day of my life except
pretty angry about that.
Except for except for the one thing that still works, word-of-mouth. Yeah. Word-of-mouth is how the podcast gets spread around. It's by clinicians. It's by people who listen to it.
It's by school nurses that I have data on who share you'd be stunned by the number of ways that the podcast is shared. That's the only thing that works. Okay? And it's it's it and I need you to download the show. Like, there's it's a two pronged idea.
You gotta download the show so you can hear it, and you gotta download the show so people will buy ads on it so I can make it again so you can hear it. It's very simple. Okay? That's how it works. And at the moment, maybe I'm never gonna grow it.
Like, maybe I'll never go find those other people because to your point about, like, somebody's gonna Google it. My daughter's friend FaceTimed me from the store the other day, and she said, I've decided I'm gonna recock my bathtub. And I was like, good for you. And she's like, I don't know what I'm doing, and I need you to help me, like, you know, pick stuff
up. Find the product.
Like, I need a dad for a second. I'm So helping her walk through. I'm like, don't buy that. I have that. I can give you that.
I can lend you that. Like like, just get that right there. And I said, how'd you even get the nerve to, like, wanna do this? Like, where'd you learn about this? And she said, I TikTok ed it.
And I thought, shit.
So she was probably, what, watching reels or whatever they're called and
then No. She searched TikTok for how to recaulk her tub.
Oh, she did. Okay. Because I was I was wondering if maybe something came up, And she was like, oh, yeah. My bathroom looks pretty nasty. I probably should do that.
Like, I wondered if it queued her into doing something that in the back of her mind, she had been noticing.
Yeah.
And then because the information came up, she was like, I got time. Let's do that.
She uses TikTok like a search engine.
So I would never
Of course, you would.
I I
No. I I know. If you understand the that the the the app works on your base, like, desires and things that make you and they make you feel enraged, then if you use TikTok for a diabetes search engine, you're just gonna get either people with diabetes acting joyously, which is nice, but isn't gonna help you bolus. But you're gonna get people complaining that the the man's hold them down or that the cure is they're gonna celebrate that it's almost over. They're gonna do whatever it is that that algorithm makes that draws eyeballs with.
And the algorithm's not gonna dry draw eyeballs with, hey. I don't know if you know this or not, but there's a thing called the Smoji effect. And or, like, you know, when you get up in the morning, did you know that did you know coffee needs to be bolus for? There's one maybe you'd get on TikTok. Like but then what do you what do you do with that after you hear that?
What they’d rather you do1:10:08
You go, oh, yeah. It happens to me too.
Because there's more information about how how to do something.
Because there's no time. It's even possible that the creator has the information. I don't know how they're gonna put the time up because when you talk to them, they don't wanna put time into the video because it's wasted. If you watch the if you look at the graphs for, I don't know, 20,000 people saw my video, 3% of them stay five seconds, then it drops off a cliff, and you'll be lucky to maintain 10 or 15% of them till the end. So you have to get I mean, I don't know.
What's 10% of a 100 like, yeah. So to get a thousand people, you need to and nobody's getting hundreds of thousands of views. Right. So you're getting 10,000 views on a video, say, to hold a 100 of them to the end. And anybody who understands marketing or how the human brain works is like, that's not that's not gonna work.
That that's those people are never gonna make it to the next thing. And that we already know that if you put two clicks between discovery and the answer, you lose people. They'll they'll literally stop clicking. They'll go, I don't it's okay. You could literally promise someone the history the the the just the I don't know.
The pot of gold, I know where it's at. Here's the map, and I gotta click three times. On the second click, they go, I don't wanna be rich that bad. It's and that's just how the brain works. So I don't I'm sorry.
I I I apologize. I don't know. I'm really upset, Jenny. I am very I
am You're frustrated.
Also, I'm gonna go live my life. I want you all to realize that those of are right about me. As soon as I get done recording, I am I'm not gonna think about this again. I'm gonna go keep making the podcast and do the thing I know that's valuable for the people who find it. I just wish that it didn't feel like even after I picked up the cookies and put them back together and wandered outside that a giant bird didn't come down and steal them from me because it's either Facebook or it's Apple or it's Meta or it's Instagram it's TikTok or it's somebody.
There's so many implements set up in front of you, and every time one of them stops you, it tells you the same thing. For just for just $10, we'll show this to 50,000 people. If you put $25 on this, we could almost guarantee that it'll reach 10,000 people. Would you like to but you don't know that because you're not a creator. You don't know that the only stuff that you're Right.
That you're seeing is something that somebody is likely paying you to see, and nobody will will admit that they're paying. Sure. Yeah. And did you see and have you noticed how everybody's turned off their counters? Like like, you don't let they on Instagram, nobody will let you see how many views their thing has.
Oh, hi. Yeah. Because they don't
have Instagram.
Don't want you to know that nobody's looking at it. They just wanna Oh, I see. Like they're doing the thing, and they're a good place for you to put your ad dollar. Because I make content all the time and blah blah blah, and you should put it behind me. And then you talk about, well, I reach all these in fairness, the people I work with understand the value of the podcast.
I'm not complaining about them.
Of course.
Yeah.
Yeah.
I just hi, Jenny. I gotta stop. I'm gonna have a stroke. I'm gonna have No. No.
No. I'm gonna go get an egg. I'm gonna have a nice egg. I'm gonna poach two eggs.
Oh, that sounds good.
I love a poached egg. I might put it with a half a piece of rye toast, and and I'm gonna
Do you know do you wanna hear something about funny about a poached egg?
Are we still recording? Go ahead. Tell me.
So when I when I was in the hospital at diagnosis, my first breakfast that next morning, I had options, and I was like, I don't know what a poached egg is. I like eggs. Let's try a poached egg. So I had a that was my very first poached egg. I really like poached eggs, by the way.
Do you know the secret to keeping them together in one little bit when you What's the secret vinegar? Yeah. A little bit of vinegar in the water keeps them together. That's a nice tip from me to you. Something you won't hear on TikTok.
There you go. You and eat your eggs. They're good for you.
Somebody's thinking right now is, like, I had to listen to an hour and ten minutes of this to find out to put a tablespoon of vinegar in a pot of water when I'm making a poached egg, a thing I would never do in my entire life.
Swirly. Swirly. Swirly.
Anyway, I don't know how that technically works, but the vinegar holds. So when you put the egg in the water, it spreads out and it gets, like, finger like, it almost ends up looking like an octopus. But and then it's hard to keep altogether, and you get the Right. You get the a lot of the white that's not edible. But if you put a little vinegar, a little white vinegar in the water, it holds it together.
You put it in before, it's, like, really, like, good hot water, or do you put
it in Oh, can the water's not your
what's your method? Yeah.
So I don't like I don't I don't like to I don't like to waste time. So I I heat the water up quickly, but if it's too hot it's too hot, it'll cook the egg too quickly. And I don't wanna I don't want a hard yolk in my in my poach. Right. So I get it up to a boil, and then I cut the the fire down.
Then I use the vinegar that helps to cool the water faster. And then I get it right where I needed it a little simmer, and then I throw my eggs in. That's it. I learned that in a cooking class that Kelly got me from
Do have a a swirl technique that
you use? I I have a little, basket that I
Oh, you have a little basket?
Yeah. You don't have a basket.
I have a basket.
Alright. I'm gonna listen, guys. If you're still listening, make sure your automatic downloads, especially in Apple podcasts, are on. Listen to an episode once in a while even if you don't care. I said, I don't even care.
Turn it on and let it run-in the background if you're not even listening. I let it run overnight while you're sleeping. I couldn't possibly care less. Just, you know, tell the algorithm that you care about it. It will show it to more people that way.
And to one last note about how, as you just said, you get the most people, it's word-of-mouth. Mhmm. So please share
Thank you.
Where you've found, right, whether it's with a new endocrine practice or the educator who's new to you or, just share where you're getting your information because that leads to more people getting more information even if you don't like Scott.
Yes. And and check out my website. There's a really a ton of valuable stuff on there for you. It's all always free. Like, don't make listen.
Don't force me into a coaching model. Don't make because I Jenny, you know how easy it would be for me to get a 100 people every three months to be on a Zoom call with me? Right? Charge them a couple grand, ride off in the sunset with all your money. I'm not doing that.
Okay? I'm just trying to give you the podcast for free. Just take the damn Jesus. I can't I'm I wish Mark Zuckerberg was here. I'd slap him open handed across the face.
I think many people would.
With a glove. Like, it was the I'd be like, sir, I challenge you to a duel. I would you were Poodles?
Did you use poodle noodles?
You were you've ruined social media. Facebook used to be an almost nearly perfect, like like, structure in the way it worked. Mhmm. It just and now you have to fight with it every day just to get it to do something. It's really it's and if you if you spent eight minutes looking through that Facebook group to see how it's helping people, how valuable it is, it you would know how, like, despicable it is to block people from seeing the information in there that they that they need to see in in lieu of whatever else you're showing them.
And and just and I'll just from a personal note for a second, and I know no one's listening to this that that could do this thing, but, like, be ashamed of yourself, you know, that you did this to the world. Like, be be really ashamed. Whoever set these platforms up like this to just be attention, like, whoring Grabbers. Minds. Like, just you should really you should just really be ashamed.
So, anyway, there's literally a lot of people, not just me, trying to help people and not just in diabetes, and you couldn't possibly be making it any harder. So and then you force people into these money schemes.
Right.
Yeah. I mean, you know, Jenny, there's there's a there's a culture on YouTube of people telling you how to be rich by being a YouTuber, but their job is to tell you that they are a successful YouTuber. So you want to be a successful YouTuber. So you think that you just don't know the secrets to doing it, But the secret is the only way to be a successful YouTuber is to YouTube about telling people how to be successful. But at what?
And then you go try to put their things into practice to sell your
And it doesn't work.
It doesn't work because the only people who are on YouTube are people who are desperate to figure out how to use YouTube. It's it's insidious, like, really, really horrifying. Like, you really gotta sip smoke look. It's hard to talk about because it's so layered. Go smoke a little weed and try to think about it for a second.
Okay? Or whatever it is you do to calm down, try to think about it a second. There are people selling attention to people looking for ways to learn how to get attention, to get your attention.
Sure.
It's it's horrifying, and you should and I'm too close to it. I'm realizing I need a vacation. I'm going to go to Ohio and have dinner with Jenny to relax. That's that's my big that's my big vacation. Yay.
Thank you.
Of course. Bye.
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It's the meter my daughter uses. She has it on her right now, and you're one click away from having it too. And don't forget using juice box podcast links helps support the show. Friends, my diabetes pro tip series is about cutting through the clutter of diabetes management to give you the straightforward practical insights that truly make a difference. This series is all about mastering the fundamentals, whether it's the basics of insulin, dosing adjustments, or everyday management strategies that will empower you to take control.
I am joined by Jenny Smith who is a diabetes educator with over thirty five years of personal experience, and we break down the complex concepts into simple actionable tips. The diabetes pro tip series runs between episode one thousand and one thousand twenty five in your podcast player, where you can listen to it at juiceboxpodcast.com by going up in the menu. If this is your first time listening to the juice box podcast and you'd like to hear more, download Apple podcast or Spotify, really any audio app at all. Look for the Juice Box Podcast and follow or subscribe. We put out new content every day that you'll enjoy.
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