#1940 Joint Pancreas
Joint Pancreas
Michelle and Don's son Carter was diagnosed at six. Two years in, they talk about the signs they missed, staying a team through it, and the thing Carter said when he heard about a cure.
Jump to a moment
- Every sign was there, and they still didn’t see it. Carter had the flu, then never bounced back — curled in his mother’s lap at six, asking for apples and bananas, and finally unable to make it home from the bus stop. At a Saint Patrick’s Day gathering they watched him refill a water bottle and ask for the bathroom perhaps twenty times. Michelle had Googled it and seen diabetes, then dismissed it because there was no family history.
- The autoimmune history was hiding in plain sight. Don has hypothyroidism, one of their daughters was later diagnosed with it, and Carter had been treated for allergies and asthma beforehand. Scott’s point: had anyone asked the autoimmune question, the conversation would have taken four seconds. He also pushes back on the advice Michelle got — don’t Google it — arguing he’d rather be wrongly worried than miss it.
- They treat it as a two-person job, on purpose. Michelle describes a fork in the road for any couple facing something life-altering: lean in together or let it pull you apart. She credits the diagnosis with bringing them closer, and calls what they built a joint pancreas — trading nights, admitting to each other when a bolus went wrong. Scott notes the research that a chronic illness in the family raises divorce risk considerably.
- The line that stopped the room. Telling Carter about a trial in which adults were reportedly cured, Michelle asked if it wasn’t inspiring. He answered that even if a cure were available to him, he’d rather it go to someone who hadn’t already been living with it a long time — because he’s already pretty good at it. He was eight. Both his parents credit a family culture that treats diabetes as something you handle, not something to be sad about.
- Pump settings don’t transfer between systems. After strong results on Omnipod 5, they tried Tandem for a few months hoping the algorithm would catch highs, didn’t match their previous time in range, and went back. Michelle wonders aloud whether it was user error — they were used to being hands-on. Scott’s framing: settings are not one-to-one across systems, and a growing kid, a season change, or a new sport moves them anyway. Not medical advice — settings changes belong with a care team.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact, the three things Scott returns to here.
- Bold Beginnings series — Scott and Jenny Smith for the newly diagnosed — the questions everyone has in the first weeks.
- Juicebox Podcast Facebook group — The private community — the kind of place the family that sent Michelle and Don supplies came from.
- Juice Cruise 2027 — The third annual Juicebox community cruise, sailing next July.
Every word of the conversation
Cold open & sponsors0:00
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So why don't we start with Don, introduce yourself, then Michelle introduce yourself when he's finished, and we will we'll just keep talking.
Okay. Alright. My name is Don. We we live in New York. We have a family of of five.
So my wife, Michelle, will introduce herself in a minute. Our daughter, who's 11. Our son, who is eight, who we'll be talking about today, and then another daughter who is five.
Three kids. Michelle, how are you?
Three kids. Good. Good. Thanks for asking. Yeah.
So we have three kids. Life is busy. Carter was diagnosed at six, so we've been living the world of diabetes for the last two years or so. Mhmm. And, you know, that's a whirlwind.
Don and I both work in the education system, so that's really been great to help us kinda navigate some supports for him, you know, most most of the year.
Really? Awesome. I'll find out more about that. What made you wanna come on the podcast?
Well, we've been listening to you for a while, getting the advice we can from you and Jenny and anybody else that's willing to chat with you. And when you opened up this this series, I talked to Michelle. I'm like, know, maybe it's an opportunity for us to you know, whatever part of our story might resonate with somebody else might help somebody else. You know, one thing that guess, you you probably have questions about some of this, but when, Carter was diagnosed on 03/18/2024, there was a friend of Michelle's, from her past whose daughter had been diagnosed in October just before that, and they sent us, you know, sheets. They sent us information.
Why they came on4:33
They sent us snacks. They sent us diabetes supplies and, you know, really used their experience to help us get start somewhere, because where do you begin when that all happens? And we, a few months later, had the opportunity to do the same thing for another family, and it just seemed like an opportunity where maybe just even if a small part of our story might resonate with somebody else and help them with a strategy or just encouragement. So that's kinda what led us to to being on here with you today.
Oh, so you got you you wanna give back, you're telling me?
Yes, sir.
I love that.
That's the goal.
That's awesome.
Okay. Cool. We'll figure this whole thing out. So but first, we wanna talk about how nervous Michelle is. Michelle, what do you mean you're
Well, we kinda didn't realize it was today was our big day, and we're, like, kind of in envy of even being able to be speaking to you. So just wanna make sure we do a great job. And so I guess I'm just nervous.
Well, you don't you definitely don't need to be nervous. I know I had to I had to call this morning. I wasn't sure who was gonna answer. And it was Don, and he's like, oh, it's strange to be talking to you. And I was like, yeah.
Yes. Super celebrity envy.
And that isn't that bizarre? It is really so I was just explaining to a friend of mine who was asking me about Friends for because I just got back from Friends for Life. And and the friend's like, you know, how'd it go? And I said, oh, you know, it went good. I I guess I talk about it more, like, clinically because she's not involved in diabetes at all.
And I was like, you know, we filled rooms, like, when we talked, which is good. Because, you know, there's plenty of times at every event where some poor soul is in a room talking to three people. And, you know, and and and you just feel terrible for them. And I my ego won't handle that. So I would definitely pull a fire alarm if that happened.
I would I would a 100% go, oh my god. Everyone look over there. It's Bigfoot. I would
run right out the back door.
And then they'd be like, where'd that guy go? And I'd like, he's not gonna he's not gonna be caught dead in a photo with four of you and chairs spread around the room. So I was explaining to her that, like, you know I was like, you know, we had I I'm gonna guess in that room, it was myself and John from Sugarpixel, and we might had 250, more than 250 people in that room. Wow. Was really it's great.
A giant room. It was packed. You know? And so I'm explaining it that way. And she's like, well, how many people are at the event?
I said, well, you know, they say two two thousand. I said, but I think that I think that includes, you know, volunteers, almost 200 volunteers. I'm sure they're counting the, you know, the vendors and the and the people that so I said, I don't know. You know, I honestly don't know. Fifteen, seventeen.
I don't know. Like, there's a lot of people there. She goes, well, 250 is a pretty big chunk of that number. And I said, oh, yeah. I'm famous there.
And she's but she doesn't know me like that. She's like, what do you mean? I'm like I'm like in certain places on the planet, very few of them. I'm like I'm like I'm like George Clooney, like circa ER. You really are.
Wow. Not the not the look, Don. But you know? And and and she's like, oh, I had no idea. And I was like, yeah.
It would be no reason for you to know because in every other aspect of my life, that is that is not that is not the truth. I I guess I have what they call Internet fame. So
Yeah. Alright.
That's no reason but, Michelle, that's no reason to be nervous because you could easily be her and know me a different way is my point.
Fair enough. Fair enough. But in the diabetes community, for sure, famous. George Clooney famous for sure.
Well, you're very nice. And and but but you're not still nervous. Right? Like, this has gone away now?
Yes. No. I'll be good. I got it.
My dumb story is relax every morning.
You made me feel way better.
Thank you. Yeah. No. I mean, honestly, you should probably be I should probably be thanking you. Actually, I should be.
Thank you for doing this.
I really do appreciate it.
So it's pleasure.
Yeah. Is there any other autoimmune in your family at all between you guys, your other kids, or even grandparents, aunts, and uncles?
The autoimmune that was already there8:36
Yes. Yes. We have myself, I have hypothyroidism since I was I was pretty young. One of our daughters has since been diagnosed with that. So there's a couple quick ones there.
Michelle, there's always something I forget, so chime in. Who who am I forgetting?
Well, also prior to Carter's diabetes diagnosis, we were working with allergy and asthma, which I was told is also kind of in the same family as autoimmune and typically starts to show up in that category as well. He he's kind of ebbed and flowed with his diagnoses there, you know, kind of been generalized. So I would say that's kinda actually how he started presenting with some forms of autoimmune prior to his diabetes diagnosis.
Yeah. My I had terrible, terrible allergies when I was younger. And they and they, like like, couldn't go outside in the summertime sometimes. Diabetes, as you know, comes with a lot of things to remember. So it's nice when someone takes something off of your plate.
US Med has done that for us. When it's time for Arden supplies to be refreshed, we get an email. Email just rolls up in my inbox. It's like, hey. This is, you know, time for your supply order.
I don't exactly know what it says. I open the email. There's a big button. I click on it. I reorder, and I'm done.
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And it's a thing I've almost not forgot about, but it changed so drastically as I got older that it doesn't really I'm not bothered by it anymore any longer. But when when my son was recruiting for college baseball, we had to do a lot of, you know, like like, I don't know, like, tours of different, you know, campuses, and you'd go meet teams. And there's a lot of, like, overnights with guys and, like, you know, trying to, like, see if you mesh with people before you say you're gonna go somewhere. And one of actually, in New York, in maybe more not upstate, but in that direction, he did an overnight, then he went out to a game the next day. And he almost couldn't, like, live there.
Like, he was Yeah. Yeah. He was fall he was falling apart. And he's like, can't I can't come here. And I was like, okay.
And then later, not a year or so later or maybe two years later, we figure out he has Hashimoto's.
Oh, interesting.
Yeah. And then, you know, my doctor tracks my thyroid, but it seems fine. Good. But yeah. But it's just really so, Michelle, what we're saying is that on that first date, you should have said, Don, you have any autoimmune issues?
Because Mhmm. And he would have said Hashimoto's. If you knew what you knew now, you'd be like, oh, that's nice. I'm gonna find a different boy. I'll talk to you later.
That's
all mine.
You almost No. I would never have done that. Really?
Good thing she didn't. Oh, good thing she didn't.
Thirty years, and staying stubborn13:11
I'd be homeless in case you're hungry. But but wait. Michelle, that's interesting. Let's do that for a second. How long have you been married?
We're going on what, Don? Thirteen years? Eleven, twelve, twelve?
How old are you? 12.
We've got 11, eight, and five.
Okay. And you are how old, Michelle?
I am 38.
You're 38. You got married when you were 26?
Yes. 20 yeah.
Wow. You know next month, I'm gonna be married for thirty years.
That's amazing. Congratulations. Is it?
I I told I I I was on a my son for my birthday, my son went and played golf, and I rode around with him. That's what I got from my that's what I got from my 50 birthday last weekend.
Quality time.
Yeah. Yeah. Yeah. Well, that that part was great, but I'm like I'm like he's like, hey. You wanna go play golf?
I don't play golf. I'm like but so I I we hang out. You know? It's a nice thing to do. He's like, get out in the sun and everything.
But he gets stuck in a stuck. Wasn't the right word. He got put in a foursome and two much older guys, 72 year old guy, 65 year old guy, probably a guy my age. Right? And they're all talking about at some point being married.
These guys are like, I was married for thirty four years. I've been this, that. And they were all, like, in their mid thirties years. And they said, how about you? And I said, oh, actually, in a couple of weeks, I'll be married for thirty years.
The guy's like, my god. How old are you? And I was like, I am taking this as a compliment. And so Right. Yeah.
But they said, what what's your secret? They all said the one guy goes, my secret was I get upset. I go to the bar. I don't come back till I relax. I was like Oh, no.
I'm like, okay. I said, I've willfully not gotten divorced a couple of times. I'm like, you know, like, when you're sitting in the in the house and you're like, what if I just left? Would that be okay?
And like,
assuming my wife did the same thing probably more than I did. I was like, that's it. You just have to be stubborn. Oh, that's a good word for it. Yeah.
Yeah.
A joint pancreas15:09
It's it's funny because when Carter got diagnosed or, yeah, think when as a family, you or a couple, you go through something that's, you know, life altering. I said to Don on multiple occasions, like, as a couple, you could either lean into each other and figure it out together and support each other and navigate it together, or I could easily see how if you didn't do that and you disagreed or you weren't able to communicate well, how it could also tear you apart.
Yeah.
And I was so thankful through Carter's diagnosis. I would actually say it probably brought Don and I closer together because we've been able to really work as a strong team, you know, a joint pancreas, I would say.
Yeah.
But I I remember at, like, certain points, I'm like, oh my gosh. Like, even watching friends go through it, like, the amount of stress, the amount of work that it takes, the amount of time that it takes, the amount of sleepless nights that exist. If it's not a team effort, I I could easily see it being one of those things that's like, oh my gosh. Like, I don't know. I don't know.
It really would put a strain on any any strong marriage.
Yeah. The the the data says rate of divorce goes from one and two to two and three with a chronic illness in the family.
For sure.
Yeah. So I I well, that's nice. Well, what do you think you guys willfully did? Let's stay with that word for a minute. What do you guys think you willfully did to make it go that way?
Constant. I I listened, and I stopped talking when she seemed to
Do what yeah. Do what Michelle tells me to do. Think I'll I'll take this one first, Michelle, then you can Okay. Tell the reality. This couple think
we Sorry,
Don. That that was funny.
I tried to be.
I'll give you my opinion, and then you'll tell me what's right.
Yeah. This is this is how the next hour will go, I No. I think we each have our own way of processing it, you know, and doing our own homework and research and, you know, whether it's listening to the podcast, talking to families we know, and, like, trying to figure things out on our own, and then we we come together. And, you know, we don't always approach things exactly the same way, but we we share what we wanna do. We we find out what works, and then we try and figure out what's best for the kid.
You know? Like, what's what's actually being productive for for Carter and and the family. So I think it's, like, the open night my open mindedness to work through it. And and, I mean, you're gonna get frustrated at moments. Like, yeah, if if I have him alone and, you know, I I don't bolus correctly and, you know, he's got high for a while, like, I feel bad about that.
I get a frustration level about it, but we don't you know, it's it's something we can admit to each other, like, this is how I did this, and I didn't do it well, or this is how I did it and worked out, we should try this. I think it's the nights can be hard. I we're coming off a relatively sleepless night because I think his his Dexcom was off, and it was kept projecting low when he wasn't. So a lot of finger pokes and up over the night, and it's kinda taking turns. So, like, I'll do this one.
I know she just got up probably an hour ago, so I'll take this one. Just sharing those responsibilities.
So How long have
you general, down? Something specific. What's that?
Is that Couple years diabetes?
Yeah. March March eighteenth twenty twenty four. So
Because to Once once that thing's reports low once or twice, you're still getting up and checking even though you figure it's not right?
Good question. I I think last night at some point, said to Michelle, go, if I I do the finger poke and it's not, you know, it's it's not low, we're we're we're not doing this again, and we're taking the Dexcom off tomorrow. And we we we did hit that point yesterday because I think he was one forty three or something. You know? So I'm like, alright.
That's it.
Did you try to calibrate it?
Yes. Yeah. It did. Couple of times.
Yeah. So is it an older older sensor?
No. Five days.
It was five days. Yeah.
Is it are they seven days or ten or ten or fifteen day what sensors?
Tens.
Tens. Okay. Oh, we're using the fifteens now. They're working really well.
That's awesome.
Yeah. Yeah. No. Are they I guess we haven't been prescribed that. I don't he's only eight, so is he he's too young as far as we know to use the fifteen day.
I mean, you just cough when you ask the doctor. You go, fifteen day.
Yeah. Okay. As long as they'll
do it. Okay. I guess, like, I thought they weren't approved yet. So it's
Approved and what they'll prescribe are two different things. Oh, okay.
Fair enough. Fair enough.
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I know. I should. I should. Wait. Too honest for my own good.
Easier to ask for forgiveness than permission?
So true.
That's all. Yeah. Yeah. Yeah. I mean, that's how I'm getting through.
So okay. So you did, at some point, say to yourself, like, this doesn't matter. Like, I'm not getting involved in this anymore. Like, Arden, last night, was riding really, like, right at eighty, like, all night long. And then the problem is if she flips over and lays on it for five seconds, it doesn't take long for it to, like, all of a sudden look like sixty eight.
And her alarm Right. Her alarm set at seventy. Right? Actually, the truth is if I set that alarm at sixty seven, I don't think it would ever beep. And maybe there's some common sense of me doing that.
But but it's at seventy, and it beeps. And then you you look, and you go, no. That looks like compression. Looks like compression. But it kinda doesn't matter if you get woken up.
Right? Right.
Like because it it happened it happened this morning. That I'm so grateful it happened eight minutes before my alarm was gonna go off because Kelly's like she's like, hey. Is she low? And I opened my eyes, and I was like, no. That's gonna that's compression.
Like, that's gonna flip the next time it it it regenerates again. I was like, just wait. And it did. It went, like, right back into the eighties. Yeah.
But then I was awake.
I know. Yeah. That's the hard part.
Compression lows and an abandoned mall21:56
It didn't matter. I I and then on nights when you still can like, the diabetes is okay, like, two nights ago, I am up at 04:30 in the morning, woken by a bad dream, still diabetes fall. I'm dreaming that Arden and I are trapped in an abandoned mall. And I've brought some juice and food, but I don't have enough. But it's okay.
So I I, like, hunker down so we don't move too much so she won't get low. And we're trying to find our way out of this abandoned mall. I don't know why an abandoned mall. And then something starts chasing us. So we have to run.
And when we run, her blood sugar starts to get lower. And then I start using up the food and the juice that I brought. And then this, like like, in the dream, I'm getting more and more anxious that we're running out of food. And then I can't get her blood sugar to come back up, and then I run out of snacks, and then I wake up in a panic. And then I can't go back to goddamn sleep.
Sleep. Yep. Yep. Yep.
Yeah. And now I'm up at 04:30 in the morning. And then last night while I'm trying to watch the all star game like American, I can barely I can barely stay awake. I I it's my it's my annual watch the National League lose the all star game evening. Yeah.
And and Traditional. Oh my well, you it it is what it is. And and there I am, like like a like an old man on the sofa, like, 45 going, god. I'm really tired. My eyes
hurt. So
and one way or the other, the diabetes got me. What were the signs, Michelle? I'm assuming you figured out that the child had diabetes.
The flu that wasn’t the flu23:37
Actually, I have
Go ahead.
I'll I'll give the the credit here, the end of it to Don, but, we had a a couple of things happen. Carter was diagnosed with the flu, and was very, very sick first. And he also had a birthday around the same time of his diagnosis, so we took him in. We got his diagnosis. I brought him back a week later for his physical, and I said to the pediatrician, I'm like, something is just not right.
My six year old son is still curled up in my lap like a baby. A week later, super sick. I really feel like, you know, we're missing something. And he's like, no. You know, this this can happen.
You know, depends on the strain of the flu. He'll bounce back. Don't worry, mom. It'll be fine. So we left.
Right? I'm thinking I'm just being over the top. I'm sure he's gonna bounce back and be fine. I know our story is is common after reading other folks and listening to other folks. Coming off of that, Carter was doing the things that we thought we would attest to a healthy growth spurt, like asking for apples and bananas for a after dinner snack.
And we really hadn't noticed water consumption immediately. That took us some time. We definitely noticed weird foods being requested, but we were like, maybe his body's just trying to recover from being so sick for the last two weeks. He just needs something.
Mhmm.
Then we had an incident where our daughter used the bus driver's our older daughter used the bus driver's cell phone to call me and said, mom, you've gotta come pick us up from the bus at our neighbor's house. I was like, what are you talking about? Is everything okay? She's like, Carter absolutely has to go to the bathroom, and he cannot cannot make it. And I'm like, what?
She's like, yeah. No. He you you have to come. So I did. And, unfortunately, by the time, you know, we had gotten there, it was it was an emergency status for him.
Yeah. And he did need to get off the bus. He would not have made it home. This then happened again, I'd say, maybe a week later. And at this point, my brother who is was in school to become an internal medicine doctor, who now is, I called him, and I'm like, what is going on?
Why is my six year old all of a sudden not able to
Make it three more houses down on the bus. Yeah. Jeez. Yeah.
Right. Like, not make it home. Like, I don't I don't understand what's going on. And that was Friday that I vividly remember because my brother was like, I'm gonna text, one of my coworkers who's, you know, specifically pediatrician, see what they say, but I would just schedule an appointment for Monday. If you're concerned, just schedule an appointment for Monday.
He's like, do not Google. Do not go down that rabbit hole. It's not a rabbit hole you wanna start. He was like, your family history is that, you know, everybody's healthy. Let's just get through the weekend unless he starts to get more sick.
Wait for that Monday appointment. So we I kinda shrugged it off. I did Google it, and I did see diabetes come up. And I'm like, there's no way. We have no family history of type one.
This it can't be yet. This has to be another virus. You know?
You've heard of the PP virus. Of course.
Yeah. Yeah. It's everywhere. That's great.
So we then were out with friends on Sunday night at a it was I think it was Saint Patrick's Day. Right, Dom?
Mhmm. Yep.
It was like a Saint Patrick's Day kinda get together. And we're all at watching a live band, and we're kind of out at a pub. And so we're watching Carter, and he's just refilling his water bottle. Of course, since we're at a restaurant, we have to take Carter to the bathroom. And he had to have asked us to go to the bathroom, like, 20 times and filled up his water bottle an astronomical amount of time for any human being, to which point I looked at Don, and I think we both knew something was really, really wrong.
Mhmm. The plan was Monday afternoon. He had an appointment to go, so we were all off to school and said goodbye like a normal Monday. I'd I head off to work first, and the plan was I was gonna take a half day and bring them. And I remember getting a phone call from Don maybe twenty minutes after I left for work, and he's like, Michelle, I just looked at Carter.
He looks cold. He looks sick. I'm not waiting. We're going right to walk ins. We need to go now.
So he dropped off the girls to school, and they took him right back at the walk in. And my next phone call was the doctor and Don telling us that we were going straight down to the hospital, not not stopping at home and getting him there as fast as we could.
Because Google knows things.
Because Google was right.
“Google was right”28:29
Wasn't that interesting, though? Like, so it's your brother's the physician? Yes. Okay. What kind of doctor?
Internal medicine.
Okay. That that I was hoping it was a podiatrist for the story, but okay. So you you're it's just interesting how we think about things. Like, you're a healthy family, which I guess what he means is is that we haven't seen any massive illnesses. Not Right.
Like, because, if you said that to me like, if you would have come to me and said, hey, Scott. I don't know you, but this is what's happening to my kid. I'd go, oh, how long has that been going on for? And then you'd tell me, and I go, is there any autoimmune stuff in your family? And you'd say, well, Don has Hashimoto's.
And I'd go, oh, your kid has type one diabetes. And that would've been, yeah, it would've been like a four second conversation you and I would've had. Also, if you would've asked, like, any one of the AIs, it would have told you the same thing.
Well, it's funny that you say that because the couple who we happened to be with that day, when Carter was drinking all the water and going to the bathroom constantly right before his diagnosis, they were with, friends of ours about a month later who were just talking. They're like, I don't know. Our daughter's doing all these things. It's so bizarre. And they were like, you need to talk to Michelle and Don.
That's exactly what Carter was doing. And everyone, you know, in that our friend group knew that Carter had been diagnosed, and sure enough, she was diagnosed the next day. So as she was talking to Don and I at the lacrosse field, I'm just, like, squeezing Don's hand. I'm like, she for sure is getting a type one diagnosis today. I'm like, I'm not gonna be the one who says it out loud, but I'm gonna be there for her when she, you know, when she gets that news from the doctor.
But as soon as she started listing her daughter's symptoms, I was like, yep. A 100%. So
This is what's gonna happen. I I I don't know. It's well, I'm glad he's okay. I mean, it sounds like he was really at the end there. I mean, his body was cold, Don.
Was it were you did you think he was gonna like, I don't I don't wanna say this out loud, but do you do you think, oh, he's gonna die? Like, this is bad, or where were you at?
No. I didn't think it was I did not think that. No. I just just given all the symptoms and the fact that he'd been feeling bad for so long, like, he he was we're just sitting there having breakfast at the island in the kitchen, and he's like, I feel cold. You know?
Just just a different symptom on top of all the other symptoms. And I'm like, yeah. We just we gotta go. We can't wait. And, you know, I guess to your point is, like, every everything was pointing towards diabetes, but it was almost I don't know if it was denial on our part.
Mhmm. You know, like, how could that be? What do you mean? There's no history. Like, it's just the virus is coming out differently.
No. I It all like, in retrospect, it's ridiculous for us to think anything else. But in the moment, it was like, it's gotta be something else. It it can't be that.
Well, this is where the argument comes from where people are like, you know, there should be testing and, you know, every doctor's office. Any flu like symptoms should get a blood sugar chest, and that that's where because there's no real answer to how would I know about a thing I don't know about.
Right.
Right.
Yeah.
Right. Because they I mean, you you like, you today say I should know, but you back then had no idea. Although, I I I have to say, I fundamentally disagree with the idea of don't use the Internet. So I I just don't don't understand that at all. Like, the the history of the world's on the Internet.
You know what
I mean?
That's the I asked that. I'd rather I would rather be pan may I I'd rather be panicked that my kid has diabetes and doesn't than whatever's gonna happen if we don't figure out it's diabetes or whatever or whatever else. That's all. Anyway.
Knowing my brother, he was probably just trying to keep me from, like, having a panic attack until I could actually do something about it on Monday.
Go to a doctor's office.
Oh, you you you guys
live too far apart. He couldn't come over?
Oh, well, he wasn't certified yet then. Couldn't do anything for us then.
Yeah. Not a doctor yet. I figured a teacher that says that. Not a doctor yet. So okay.
“Most kids come in in a coma”32:12
So once he's diagnosed at the hospital, is it a long stay? Or
No. We were we were fortunate. Carter walks himself into the hospital, which we were told multiple times was a blessing that most kids his age do not do that. There's usually some sort of medical emergency. We were able to get in right away.
We stayed, I believe, on just one night. Correct?
Just one night. Yeah.
Yeah. Can I stop you for
a second? Because we were told the same thing, and I've I I in hindsight and a lot of hindsight because Arden's just about twenty years into this now. But the whole, like, oh, you know, usually kids your daughter's age come in in a coma is what we
were told.
Yes. Us too.
And and you get told that as a way of you getting to feel like you did a good job or that you're lucky or whatever. But if you flip that around and look at it a different way, what you see is that the way we figure out that people have type one diabetes is so inept that often they show up in a coma.
Right.
You you know what I mean? Like, there's another way to think about that. And so I it would be nice if the medical community, instead of going like, oh, I don't know how you got this one here without being comatose, but way to go, said to themselves, I wonder how we could help people figure this out sooner. For sure. Yeah.
It's just it's just an interesting I don't know. I I find a lot of stuff around diabetes works this way. Like, the the one where they go, like, you know, in a year, you're gonna know more than me about it. And I and I used to think, oh, that's that's interesting. That means I'm empowered.
I'm gonna know more than the doctor. And now it just makes me feel like, why won't the doctor learn more about it?
Is it
this way? Yeah. How about if since it's your professional calling, you don't let me outpace you on knowledge? How would that be?
Right.
Yeah. But anyway,
I don't know We why feel that way.
You guys are so nice, and I seem upset for some reason. I have no idea why. I'm sorry. So you're in and out of the hospital pretty quickly.
Pretty quick.
Yeah. What's the
what's the what's the baseline knowledge you get coming out of there? How do you start pulling together your, you know, your your community around the whole thing?
Well, our I think our biggest drive to get home was that we left our other two kids with, like, here you go. We're going to school. It's a normal day. And then, you know, they got off the bus to grandparents saying, your brother's in the hospital. Mom's not coming home, you know
Yeah.
Type thing. And we wanted to recognize that the diagnosis isn't just impacting us and Carter, but also his siblings. And I think that's also something that we sometimes overlook is that it does impact the entire family, not just the diabetic and the caretakers, the primary caretakers. So we met with a diabetic educator who at the hospital wanted us to meet with them and another family, and I really advocated that we just meet our family. We were both Don and I were both in shock.
We were very emotional. We were trying very hard to hide our emotions from Carter and stay strong in front of Carter. And, you know, we we wanted to learn everything that we could as fast as we could to keep him our our line at home is to keep you safe and healthy. And, you know, I think as soon as we knew this was the boat we were in, even though we were, I don't know, emotional zombies, I would say, didn't even know which way was up. I think we both attacked it with the the thought of, like, we're just gonna learn everything we can and do everything we can to to learn as much as we can to keep him healthy and help him through this.
Is this who you guys are, or is this a part and parcel with your profession, do you think, the way you're thinking about all this?
I don't know. I think it is partly just kind of by design who we are. I think we both working in education. Right? We choose to serve and to help others and wanna see everyone succeed.
But I think that in general, you know, our parenting and our our understanding of the world is if we could help others be successful and thrive in any way. It's medically, if it's a different way, you know, we're we wanna help. So, you know, I think our biggest thing with Carter, and I hope with any diabetic, is knowing that it doesn't define them and that this is just part of their journey. It's a small part. And I I think that we both agreed from the beginning that, you know, we were gonna make that a known quantity for Carter, that he was never gonna feel like he couldn't do something because of his diabetes.
Diabetes sucks — the family joke36:45
Mhmm. He was never going to see us sad about his diabetes. Our running joke at home when we have a bad day is we say diabetes sucks. Our five year old said it in somebody else's car, and, her friend was like, what does sucks mean? And the mom was just, like, was like, dying.
Kelly even knows that diabetes sucks.
Is is
it working, the plan?
Yes. I will the story that I always share that was relatively recent is our our son is a very busy eight year old boy who I like, I'll be honest. He he's very involved in his management. He's very smart. He understands carbs.
He understands correction. We let him do a lot on his pump, but we also don't hold him to a ton of responsibility because we don't want him to have diabetic burnout either. So we want him to be educated and aware, but we also don't want him to feel burdened at this point because he is so young. I was sharing with him the Elodon study, and I just said to him, hey, bud. Like, how cool is this that, like, they have come up with this, you know, trial where 12 people have been cured, 12 adults have been cured of type one?
I mean, I know it's, like, really far away from being something that, you know, we would ever be able to access, but isn't that just, like, really inspiring? And he said to me, mom, even if there was a cure for diabetes that I could get, I'd rather give it to someone else who hasn't already been living with it for a long time because I'm already pretty good at it. So I got this.
What the hell
is going on
over there? Is there a religion? Did you not mention a religion or something going on? Why are you people so nice? I don't understand what's happening.
Explain.
I used to have the
kids baby. I'm like, I imagine he's running, like, a SaaS company online or something. What what's what's going on?
I mean, we are we are religious. We go to church every week, and, you know, that's part of our life has been passed down from our parents from generation to generation. But I don't know how to explain that story for his mind is usually focused on which Minecraft world am I in right
now Yeah.
And which Pokemon am I gonna be.
I I mean, like, in a in a all or none situation, that's lovely. I I would like him to be going, hey. What if I could have it end the other kid that I was talking about? Like, is there For sure. Can we all get can we all get involved?
Well, that is lovely. I mean, what a nice what a nice story. Like, jeez. You must tell that everywhere, Michelle.
Would I, like I'm getting teary eyed just thinking of him saying it. And if if you knew Carter, you know that he can be, like, crazy and all over the place, and he's not overly emotional, but he definitely is a deep thinker. Yeah. So for him to really process that and verbalize that out loud as an eight year old boy, just really, you know, quite incredible with a disease that's, like, really hard to live with and definitely makes his day different than his peers. And, you know, he definitely has moments where he's embarrassed by it or he feels, like he doesn't wanna talk about it.
So to hear him say that was was really like, okay. Maybe, yeah, maybe we're doing something right. Maybe.
Yeah. Listen. I would definitely definitely don't take credit for that. I mean, a 100.
Oh, he is my son.
Yeah. Yeah. Well, he's just really just taking after me is what's happening here. I I do a lot of selfless things myself. I don't wanna list them here, but I do have them written on a card if you'd like to read them.
Yeah. Just trying to model.
Yeah. Yeah. Yeah. That's I I yeah. That that's my new favorite word.
You have to model for them. I'm like, yeah. My dad modeled. He had a cigarette in his hand when he woke up in the morning.
Yeah. It's like, you
know what? We don't say what the model's supposed to be.
Yeah. Yeah. Yeah. People needed to be more specific when they were explaining it to my parents. Also, how do I not smoke?
That's ridiculous. Seriously. I mean, like but that's not there's I'm being serious for a second. Like, I don't like, I was around smoking constantly. I it would I would never, like, consider smoking.
And and and why why does sometimes kids go one way and sometimes they go the other way? Like, how come you know what I mean? How come Carter wasn't like, mom, is there a cure? I need a stick. I'm gonna beat all these other kids off that I need to get a little image.
Like, know, how come he didn't pivot the other way? You know?
I know.
That's really something.
What Carter said about a cure41:12
You know, he the day that he was diagnosed and him and I were in the hospital bed, I do remember him saying to me, mom, I really wish, you know, I really wish there there was a cure for diabetes. You know, the very first day, it was just him and I in that hospital bed. And I remember texting Don, and I remember being like, I'm just so angry. I just remember saying, like, I just wish I could take this away from him. You know, of course, just as soon as he fell asleep, being a puddle.
So to be here two years later, I just hope gives hope to other families who might be on initial diagnosis that it does get better.
Certainly. Yeah. No. There's no cure for diabetes, but there was a cure to get rid of those tissues in the in the hospital room because I don't know how you didn't cry in his face when he said that. Yeah.
That must have been difficult.
I yeah. There was a lot of there was a lot of silent, wiping away and putting it into my T shirt. And
Yeah. You know, I I I don't know that I've shared this enough. I don't remember how old Arden was. She was pretty young. And she was sitting up on the counter, and we were doing something about the diabetes.
And she was young enough that she said she she mentioned a friend's child who has pretty severe autism and and is is verbal, but struggles with a lot of things. You know? Like, it's enough that at her age, six, seven, eight years old, whenever she was back then, like, she was she was very aware of the child. You know? And she says, I'd rather have what he has than diabetes.
And I said, why? And she said, well, at least he's not gonna at least he can't die from that. And I thought, god. How does she even know that? You you know what I mean?
And and she was really young. And that's that's like that when you don't cry in that situation, you should get, like, a merit badge from the parenting society. Seriously? It should, like, appear in the it should appear in the sky above you, like and you should be able to reach up, touch it, and add it to your to your badge collection. You know what I mean?
Like, it's like a video game. Because when I didn't cry, I was like, oh my god. I really might be good at this, because it was absolutely horrifying.
Got it. Know, it's so tough. I think that's one of the hardest topics for Carter. We, we recently got a diabetic alert dog and, received a a donation from the Lions Club. So they had asked us to speak at a few different events just about diabetes to spread awareness.
It's one of their pillars of advocacy as well. And in the, you know, presentation that Don and I had made, we did, you know, talk a little bit about, I I forget exactly what the line was or how it was phrased, but there was something in there that, you know, there's you know, if the wrong type of care or not waking up to an alarm could mean, right, that our child could die, and Carter just lost it. I didn't even think about it. The first time that he heard us speak and we got in the car, he was sad, and he was crying. And I was like, I don't what what happened?
I thought this was, a nice family event.
Bruce was here.
What's the joke about where you slipped in that I could drop dead in my sleep. Thanks.
Right. Yeah. Yeah.
He was just the one second he actually listened,
he was he heard that.
Yes. I and I you know what? That might have been the analogy, Don. I think it was talking about how I had the first time I slept through an alarm post his diagnosis, and I was in a mess, with that thought. Right?
Like, if I slipped through an alarm and Don hadn't woken up, what could have happened? Right? This is the constant stress that a nondiabetic parent might not see or someone looking from the outside in doesn't realize the weight of what we carry. And Carter was like, I didn't like that you said that. That really hurt my feelings.
And
Wait. He was aware it could happen?
He so I that's where we were somewhat surprised is because we had talked to Carter about a medical coma and how, like, you do need to listen to your alarms. We've been pretty forthcoming with Carter about his needs and the importance of them, because he doesn't always listen to his alarms. I don't know if we ever had used the word die in front of him before. Mhmm. Or maybe we you know, because we hadn't specifically used that word, he didn't realize that, like, a medical coma means you could probably go get fixed and come out of that coma, everything would be fine.
Yeah. Yeah. I didn't have a lot of context for a medical coma, mom. Thanks.
Right. Or or maybe or yeah. Or
but I liked when you told it to the to the was it the lion? Almost like Kiwanis. To the lions. Yeah. With the grand pooh bah there, that's a Flintstones.
But with the Flintstones used to be a black and white cartoon, I just wanna say that's how old I am.
That's all I wanna say. So
I you know, there's a there was a story told in the podcast, like, years and years ago about this woman who's got three kids. One's older, like, 16, 17. Then there's a kid with type one that's around 10 and one slightly younger than that. And she had to run the youngest one to a sporting thing, and they had bolus the middle kid. And as she leaves, she says to the older one, hey.
Make sure he eats, you know, because he's had insulin, and the food's there. And then she gets back not long later, and he's, like, sitting on the floor at the door of the garage waiting for it just crying his eyes out because the older sibling said, hey. Eat that. I don't need you dying.
Oh.
And that was the first time that, contextually, the kid understood what could happen.
Yeah.
Yeah. And it and I know, it's not not that the older sibling, you know what I mean, wasn't trying to I I think it was just, like, flipping. And, you know
Right.
But that's how that kid found out that. Right. So I I so I like scary. I like the openness of it, the way you handled it. I think we were fairly open about it too at an appropriate I mean, Arlen was two.
Like, you know, you don't you don't need to burden you don't need to burden a three year old with it. No. No. But but at at a certain point, I I I don't know. It's I think kinda respectful for them to understand their situation.
You know?
Yeah. I mean, I always tell Carter, like, you have one body, and this is the body god gave you. So we have to take care of it, and that means listening to our alarms. You know, we don't wanna have big highs and big lows. So if we don't acknowledge those alarm, that's what could happen, and that can do damage that we might not see or feel in our body right now.
But when you're 30 or 40, you might have a different response. It was something that we could have prevented now if we don't do the right things. Mhmm. And, you know, obviously, that conversation triggered what would happen in a medical coma potentially. Because I do think that it's important that when appropriate, to your point, you know, they're educated.
So, like, when he is a teenager and I'm not in control of him or when he's not with me, that he still continues to take care of his body. So as he becomes an adult, becomes my age, that he doesn't have issues that impact, you know, other things that we could have prevented now.
I know how you feel. It's, are you ready for when he gets older? And is that happening yet, or is he still listening pretty well?
He does not really acknowledge his alarms when he's with us. It's it's tough. I think I don't know if it's because they go off as you know, they're always with him. They go off so often that he just doesn't hear them or if he's just so busy and fixated on what he does that or what he's doing. He doesn't want to acknowledge them.
He has become much more aware of a low and catching them whether his alarm is going or not. He's almost starting to get a little bit ahead of it. Like, the other day, we were leaving camp, and he was like, mom, I know my Dexcom doesn't say I'm low, but I I feel low.
Mhmm.
And he was right. So I think in that way, we're making gains. Unfortunately, he doesn't super care or feel a difference about being high. So we really that kinda is up to us to kinda say to him, alright. You need a correction, or we need to do the correction for him.
I think some of it for him is just kinda growing up and becoming more mature and aware of what he needs.
Waiting, alarms, and what comes with time49:27
Yeah. I mean, my opinion is that it just takes time.
Yeah. For sure.
So Mhmm. It's not a thing you can you can't rush, and you can't make somebody aware of something that their brain's not gonna doesn't, like, naturally want to be aware of. I don't know if those all if all those words are supposed to go together or not,
but it it is definitely
it is definitely how I feel about it. Like, you know, there's there's moments when it just starts to solidify for people. Yes. And, you know, and you can't you can't you can't beat them into submission on it. That it'll almost always go the wrong way when you try to do that.
So Yeah. Yeah.
I think what's worked for us is if we know he's low if the situation's right, you know, not in the middle of the night, we'll ask him, like, do you feel any different? Or if he if he shares a feeling and we check the blood sugar and it's something, then we try and connect it for him. But, yeah, the we just call him he's he's a gremlin when he gets high, if you know you know that movie reference.
I'd I'd be trying Can I tell you honestly? Never seen gremlins, but I completely understand the reference. Don't worry. You know what Yeah. You can't eat after midnight.
Whole thing. Doesn't Santa die in the chimney in that movie?
Oh, man. Now it's been wild.
I haven't even seen the movie Don I know more about than you. Go ahead.
Yes. Yes. But we both know what gremlins are. That's
the important part of the
story. Common ground there. So that's you know? But I guess it's just, you know, trying to now that he's he can start to connect with feelings, so just give him the opportunity to do it And, you know, ask him what he's comfortable with. Like, he's he's good giving himself insulin because that means he can eat.
So that's an easy one to teach. And he likes candy. So when he's low, he knows he gets gets a few treats a little bit of sugar. So, Brian, what what whatever parts, like, are more more relatable to him, we try and make sure we can make a connection.
Yeah. Yeah. How are
The hardest the hardest part for him, I would say oh, I'm sorry.
No. Go ahead.
The hardest part for him, I would say, is the having to wait. The wait five minutes, wait ten minutes to eat. And I think that's gonna come with maturity and time.
Well, that's not what the adults tell me. The adults tell me that that's never gonna come. So No. Yeah.
Same thing.
Yeah. The the adults that have type one for a long time say, they better make an algorithm that doesn't need me to pre bolus because that is what I've learned to believe from people is that no one thinks twenty minutes before they're hungry, I bet you I'm gonna be hungry in twenty minutes.
True.
Yeah. I and whatever happens after that, like, that kind of yeah. You can you can you can look at it a number of different ways. Right? Type ones don't probably have as much or any amylin.
Right? They're they have more hunger than some sometimes type ones have way more hunger than than they would if they didn't have diabetes. And, like, there's you know? Or how about, like, nobody thinks I'd like a handful of pretzels. I'll wait twenty minutes before I have one.
Like, it just Right. It's
just Fair enough.
It really does suck. But yeah. I mean, I I I don't know. I see Arden do it sometimes, other times not. Sometimes because she doesn't think to, sometimes because she's busy.
Mhmm. I know when she does, you know, her blood sugar barely goes up at all. And when she doesn't, it it goes up. So
Yeah. Mhmm.
And and but you're you're still in I I think I'm taking from our conversation for you. You're still in the part where you feel like you're gonna be able to guide this exactly where you want it to go. Do you feel that way, Michelle? Like, you can set him up to do the right things so that when he's older, he'll just do them? Like, have you opened yourself up to the possibility that it won't work out every time you
go? I think I'm aware of the fact that there's going to be a time where he may not want to do the things that he's supposed to do, and that will be something that we'll have to, you know, get through together as a family for sure. Yeah.
Don laughed because he's like, she's been keeping me doing what she wants me to do for
at least. Yeah. It works for everybody else.
I don't have any opinions that I'm aware of. So no. But see, I'm gonna tell you, like, from my experience. I I don't know that I felt like that directly. Like, not in a not in a controlling way, but in a way of, like, you know, I'll just explain it, and then that'll happen.
And then as you get older and you realize that's not how it works for everybody, and then you watch them get older and you realize that their structure of importance is not the same as yours. Right? They don't have number one on their list isn't the same as your number one. And then you go, oh, I'm either gonna fight with them about it, or I'm gonna just hope that, you know, you're gonna go back to that old parenting adage. Like, I hope that I taught them well enough that when the time comes, they'll do the right thing.
Yeah. Yeah. It's hard with medical.
Yeah. And we teenage we or even our oldest is not a teenager yet. So for you that have been through multiple teenagers, like, we there's gonna be rebellion. There'll be, you know, those types of things. So, yeah, I think to your point is diabetes, like the other other things in his life, you try and set the routines and the structure and educate them and just, yeah, hope that
Yeah.
Someone makes the right decision in those times.
Yeah. Yeah. Hopefully hopefully, the right things go on autopilot. I look. I mean, Arden's, you know, pretty much through college at this point.
She might you might go to grad school, but but I think we did pretty well. Like, I I looking back, you know, did Arden's a one c go up in college? Like, it did. It went from, like, the high fives into the mid sixes. But what what are we talking about?
You know what I mean? Like, she's a girl in college keeping a mid six. Like, I'm not arguing about that. It's awesome.
Right. That's amazing.
Yeah. Yeah. I'm that's fantastic. If I was standing next to her, you know, would I have shaved some off of it? Yeah.
But, honestly, probably just with prebolising and addressing high blood sugar faster. Probably the only two things she like and and by the I'm I'm pretty sure we could bring 2,000 maybe I have already 2,000 type ones through here and ask them the same thing. And I said, you know, if I said what would bring your a one c down, they'd say probably, you know, understanding my meals better and not looking at a high blood sugar for so long. So, yeah, you know, I it really is it.
And I do think that there's a balance between managing the disease and just like you're saying, being a college kid, being an eight year old boy, being, you know, a child. I think that, you know, our opinion is not that the control has to be so tight that it takes away from those things as long as they're healthy. Yeah. Right? Everyone's different, and I think that however everyone decides to manage this disease, I just give them a lot of credit for dealing with it and managing it the way that they feel is best.
But, I agree. I think that they just need to be able to be college kids' children as well. And then the diabetes is, you know, you're just doing your best in the phase that you're in.
Mhmm. Yeah. No. It's really is it. And every phase is gonna carry pretty much the same overall problems.
Just Right. They'll look differently because of the part of your life that you're in. You know? Or, you know, women say, like, a lot, oh, I had a baby, and then, you know, taking care of the baby was so much I didn't take as good care of myself. I've heard that with and without diabetes in somebody's life.
Sure.
Yeah. Or fathers, you know, or like, you know, I was trying to be invincible, blah blah blah. Then something happened. I realized, oh gosh. I need to be around for this.
This is all very, like, common stuff. Michelle, why are you such a we're not on videos. We can't see each other. But you are so good at communicating. Like, it it's gotta is it about your job?
You actually make an audible noise that lets me know you wanna speak, which makes me feel like I don't have to stretch out my thought because I know you're getting ready to jump in. Are you doing that on purpose?
I have no idea how I'm doing that.
Oh, you're just it's just a I can tell by your breath that you have a thought that you'd like to get out.
Wow.
Don, are you aware of this or no?
I don't we we do. It is a
little bit different being in
in a different room. I feel like we read each other pretty well in person. So I I don't know that I ever thought about it that way.
It's it's been happening for the last forty five minutes. She when I know that you have a formed idea and that I don't need to expound anymore, and you just you just you breathe in a little bit. I hear it every time, and I'm like, oh, I can stop talking now. She's gonna fill. And then you fill perfectly.
You jump right in. You could be on my podcast all the time is what I'm saying.
Oh, perfect. I'm a natural, so I had nothing to be nervous about.
I think you are maybe a natural at this, honestly. And Don's being Don's being, you know, extra careful because he doesn't wanna step on you or me, but he's I'm trying to decide if he's more worried about insulting me or you. I think you
The problem.
Don's Don's the humor to our pair, though, so we need him because he lightens the mood.
He's the humor?
Yeah. For sure.
Well, do kids play sports, Don?
We yeah. We we do a few different things. Carter is a baseball guy in Taekwondo. We've we've really exposed the kids any sports they wanna play. They've had the opportunity.
So we've tried soccer, lacrosse, flag football, baseball. I'm probably missing something.
Is anything sticking right now?
Yeah. You know, as as a former soccer player, unfortunately, my five year old is the only one that's willing to play soccer right now, so that hasn't stuck with the older two. Mhmm. Carter's played three seasons of baseball, so that's seemingly consistent. I don't know if he likes baseball or just hanging out in the dugout with do it you know, chewing gum and sunflower seeds and putting on the iBlack, but if he participates, you know, we'll take that.
Ava Ava's taken to flag football and lacrosse right now, the oldest one. So we're trying. I I'm trying to get him into golf as well so that, like, your son, they'll wanna take me someday. Yeah. So that's the goal.
That's a lifelong goal.
Yeah. I I'm gonna have to learn how to play. He keeps telling me. He's like, you'll play. And I'm like, I don't feel like I have the ability to be repetitious with it.
Like and and I'm so afraid that I'll hit one good, and then the next one, someone will die. You know? Like, I've
Well, you take that one good, and you gotta roll with it. I'm just
gonna have be the kind of person that if I hit one really good, I'd go, alright. Well, we're done now. I I mean, I've done it.
Let's just Enough.
We'll just tell people about this one.
And so
or I'll remember this one when the time comes. Well, it's nice. Yeah. You're looking for stuff to do together. Now is the blood sugar manageable during these events, and and what are you guys using actually to manage?
Omnipod to Tandem and back59:53
Yeah. Well, it depends on the day. Typically, you know, baseball, at least right now, it's rec baseball, so you can put yourself in pretty close proximity to him for the most part wherever he is. Yeah. But he'll, you know, he'll get a pack of gum, and he'll he'll chew the entire pack, and that'll cause him to go high or you know, the the so it can get a little bit complicated there.
But we use we've got the Dexcom g seven, and then we're on the Omnipod right now, Omnipod five. That's what he started with. We actually switched over to the tandem for a little bit and then went back to the Omnipod relatively recently.
What can I ask both sides of that? Why just switch? Why just switch back?
I this is where I'll start again, and then I'll let Michelle fill in the blanks. The we we we were hitting the Omnipod. We get in the high seventies, you know, in range per week, but it was a lot a lot of us inter interacting with it and some overcorrections and things like that. So we we just heard about the tandem algorithm that it might be a little bit more aggressive in, you know, the auto correction fact or the auto correction that it can do as part of its algorithm that might help reduce some of the highs that we were seeing. We had some friends that were on it that said they loved it for their kid.
So we're like, yeah, if it's gonna help us do it, then let let's give it a shot. So we did that for a couple of months, three months, something like that, and we just were not getting anywhere near the in range times that we were with the Omnipod. And and also with summer here, you know, we were a lot of swimming, so he'd have to take you know, I guess you can go in the pool with it, but he'd take it out. He'd forget to put it back in. He'd forget where he put it.
We just had some different things like that, so it caused him to go high. So, the Omnipod five just seemed to be one more effective beforehand and then kinda fit our lifestyle better right now. Okay. You know, with potential to go back to the tandem in the fall if if we feel like, you know, we're that might give us something different.
Well, I would let let me, I'll speak, I think, hopefully, thoughtfully on all fronts. So first of all, Omnipod five has the new 100 target, which you should Yep. Try if you're not.
And Yeah. We need the new pods for it. We're getting them. They're prescribed for us.
And then I in defense of the tandem switch that didn't go well, I the settings from an your Omnipod are not necessarily gonna transfer to your tandem vice versa. And same with, you know, MiniMed or, you know, any of the other twist, any of these. By the way, those are all sponsors. Please look in the show notes and click on them if you wanna learn more. Seriously.
Done. We got we gotta keep the lights on here. You know what mean?
We should. We should. They're all they're all fantastic, and definitely look at the one that works for you.
Yeah. Great sponsors. Go check them out. Mhmm. Not the point.
The point is is that settings are not one to one from these systems, and I don't know that people understand that. I don't I don't know that, you know, that people aren't just, like, taking their MDI settings, going to Omnipod five, and going, don't understand why this doesn't work. I'll go try a different one. It didn't work here either. Blah blah blah.
Like Mhmm. Especially with, like, a growing kid. You know what I mean? Like, an extra five pounds.
Mhmm.
The the season changing. The I don't know. I I was playing soccer. Now I'm not. I, you know, I was sitting around playing Minecraft.
Now I'm playing soccer. Like, all these things have such huge impacts. I don't hear people talk about this stuff when they talk about this. They just the thing
No. That
doesn't seem to work. Yeah. They talk about
That's that's a great point. The rep we worked with at Tandem was was really great in trying to explain that and meet with us and change you know, look at the data over a couple weeks and change you know, tweak this factor or that factor. So we we did try that a couple of times. It just didn't seem to be Yeah.
You can turn the wrong knob, and it just it just takes you in the wrong further in the wrong direction. I know. It's tough. It really is. Set settings settings.
I mean, it's where the that's why I talk about it so much on podcasts. You gotta get your settings right. You gotta understand the impacts of your food. You know what I mean? It's timing and amount.
That's kind of it, really. You know? Is there fat in it? Nobody's gonna tell you about that. Nope.
Hardly at all. And then that'll mess everything up, and you'll run around going, I don't know why this isn't working. The thing the thing is broken. Yeah.
Right.
Well, listen. It's good for it's good for business on my side. There's four of them. Go try them all. I don't care.
It's good
to have options. Just use
the link. Don, just use
the link. You can try every one of them. I couldn't possibly I
couldn't possibly care less if you can't afford to retire one day. Okay? My god. It is expensive. Are you lucky?
Does your insurance handle most of this stuff for you?
We were fortunate that our insurance had the tandem come through prescription, which allowed us to not get involved in a contract, which my understanding is if you go through medical, you do get locked into a, like, certain year contract on the Tandem. So because of that, we were able to easily go back and forth between the Tandem and the Omnipod.
Yeah. That's awesome.
Yeah. We did have a little bit of an issue trying to get supplies and and things in and out, but I also just think, you know, we, you know, we got so comfortable controlling what we could control on the Omnipod. It was almost, like, hard to change ourselves to the the settings on the Tandem. So I I kept saying Tandem rep. I feel like it's more like user error because we're just so used to Don and I being in so much control on the Omnipod.
And so it's it is just a very different approach to management. So I think that's just wouldn't be an important thing if you're thinking about switching. It's just different, really a different approach altogether.
Well, it it's at the very least, it's a diff it's different than what you were doing.
Correct. Yeah. Totally.
And then Correct. The one needs or wants something that the other
They're just different. Yeah.
No. It's it's a it's it's not it's not an insignificant point you're making at all. Alright. So if I if if Carter was here and I asked him what how's it going, you think he'd say going great? And if I dug deeper, do you think he'd have context for that, or does he just think, like, you know, it all you know what I mean?
Like, what's his understanding of of how this is working?
Knowing Carter, he'd be like, good. Don't know how much deeper he would get for you. Mhmm.
That's exactly the word I was thinking. He's good. I
think I truly think that at this point, Carter just recognizes that diabetes is a part of his life, and he knows that there are things that he needs to do. I don't think he will ever remember a life before diabetes, which I suppose is a blessing in in a lot of ways. And I don't know if he's mature enough yet to realize the significance of some of his choices or what could be or the long term potentials of the disease. So I would say he'd right now just tell you that, you know, life is good. He's at camp with his friends.
He's able to do the things that he wants to do, and so life is good.
No. That that's encouraging, actually. If if that's I I don't think he, like you said, is gonna have a deeper thought about it at the moment. And if he feels like things are going well, then they are going well.
Yeah. Yeah. I think one thing that was humbling for us was when we did want him to go to summer camp, and Endo told us that, like, summer camps don't have to take him. If they don't have a nurse, they can turn us away. And I remember looking at Don and being like, what?
Camps, playdates, and the word fair1:07:39
Like, he can be excluded from things because he's a diabetic? Like, how how is this fair? And then I'm like, my line is, like, fair shouldn't even be a word in our vocabulary. And we've been really fortunate that we found a camp that even though they don't have a nurse, that even though it's not always easy, they've worked with us really well to keep him there and let him be present and be with all of his friends and be an eight year old boy, which is great. But that was a a tough pill to swallow when we heard that from Endo.
Yeah. Yeah. I mean, it's not the only place to I mean, there's just some places it's gonna be because they don't want the responsibility. Some places it's gonna be because they legally don't have to, so it's easier for them. There's you know, there'll be a lot of different things.
And, you know, along the way, they'll either sometimes he just won't enter I mean, you know, the military is an example. He can't he can't join the military. And if it's not a thing he wants to do, then he's never gonna he'll never know. You know? Right.
If he's been running around telling you he wants to fly, you know, Air Force planes, then he's in for a rude awakening. Right. It's it it but that part about them not having to take them, did it just feel I mean, can you put more context to how it made you feel? Like, besides obviously just shocked, like, did you
Yeah. I I think I just you know, as any parent would want, you don't want barriers for your child. You wanna remove all the barriers that you can, and diabetes is not a barrier that we can remove. I just the thought of him just being left out or being unable to do something that he would wanna do with his friends because of the disease when we sit here and say, you know, just because you're a diabetic doesn't mean you can't do anything. I I think I just as a my my heart hurt.
I understood the logistics of it. I understand the medical necessity of having a nurse and the responsibility that comes with it. For a while, I felt kind of a similar heaviness over him wanting to go on a play date at someone else's house Mhmm. And not really knowing how to handle that, you know, without me being there or Don being there and him wanting to be like, how come I can't just go to a friend's house like Yeah.
You know,
my big sister is without you, and why can't you guys just leave? Right? Like, it's not as simple. So I think I think it was just a reality that his life will be different even even though I I don't want it to be.
Tell me why it's not that simple.
I I I I think at the first point when he was diagnosed, he was not doing any of the management himself.
Mhmm.
And I felt like asking another parent to be responsible for that, and maybe that was my own fear, was too big of an ask. Right? Like, here, have my six year old son. And by the way, he's a type one diabetic, and you need to do all these things, and I have to be able to text you or call you constantly. And you know?
Well, you let their kid come over, and their kid's a little jerk. Isn't it the same thing?
You know? I don't know. A little bit different. A little spicy attitude compared to, like, a medical emergency.
I mean, I don't know. Like, some of those kids are are horrible.
We have been very blessed. We have really great friends now who let Carter go over there all the time, and they keep they keep a, you know, a monitor to test his blood sugar there. And they have all of his needs, his, you know, his tabs there for glucose, and he comes and goes from his house to that how our house to that house like it's his own. So we've made it through that phase, luckily, and he can do more himself. So, luckily, that was a short lived phase for us.
But
A lot coming, Michelle.
Pace I
know. Pace yourself. Okay?
I know. I don't even wanna hear the word sleepover. Don't even say it.
Ah, it's easy. Don't worry. Fine. The thing will beep. Somebody will wake up.
If they don't, you're not gonna sleep anyway. You could watch it. And It's true. This is true. You just We
got our sugar pixels set up. We're all
Yeah. Hey. Customtype1.com/juicebox. And That's what saying. I make, like, a dollar every time you buy a a sugar pixel.
I don't even
I first, let me be honest. I don't know how much I make. And I I just know that it's not it's not a grand amount of money. But if you buy through my link, I do get something. And but those new SugarPixels are awesome.
They are really cool. We have a bunch of the older version, and I wish we didn't have as many so I could logistically convince myself to buy a new one because they look really awesome.
What if a couple of them broke?
If a couple of them broke, I should tell Carter.
Easy. Easy. I
was like, that's did you hear educators earlier? Did you hear when I
said We were listen. When we're waiting to to start the call, I'm getting links Amazon links sent to me, you know, with the free time that we had. So
Well, I I I guess I I I would tell you about the to kinda go back to the the overnight stuff a little bit. You can prep people pretty well. Like, I think if you strip out your fear from it, you'll you'll realize it's there's not that much to it. Right? Like, somebody might have to wake up and give them a juice or something like that once or whatever.
But, like, they can deal with it. And if they're really good friends and good neighbors, then they're just not gonna sleep well at night, and that that'll be okay. And if they do exclude them because of that, I say better to know now than later.
That's true.
You know what I mean? Like, if they're gonna be if they're gonna be like that, I'd rather know that's how they are, I guess.
Yeah.
Because we ran into one. Good perspective. I can picture her in my in my head. You know? Wouldn't invite Arden to anything.
Would ask her to leave. Like, she could come over for a sleepover, but when the kids went to bed, Arden had to go. Like, she just didn't wanna be involved. Now I never asked her why. Maybe I don't know.
Maybe maybe she was scared. You know, you you just assume they don't wanna help, that they're, you know, being lazy or selfish or something, but that may be not the case. Maybe she was just nervous. She didn't wanna hurt her. You know?
I don't know. Then I've had other people just jump right in. I I I honestly I picked Arden up from a sleepover one time. This guy, he looked cracked out of his head when I got there. I'm like, you alright, man?
You just didn't sleep. Don't know how you sleep with this. And I was like, what? But he took it really seriously. And and once he kind of ran the numbers in his head about the stuff I told him, he he just said to himself, like, it's just one night.
I'm not gonna go to sleep. That little kid's here. And he took awesome care of Art. You know? So
That's awesome. Yeah.
You never know who it's gonna be. So I don't know. Get out there and find out. Also, somebody's gonna hurt his feelings. Toughen him up before a girl breaks
his
heart 12 times. You know what mean? Yeah.
I'm trying to toughen him up.
Yeah. Michelle, forget this diabetes thing. What about when some girl's mean to him? What are you gonna do to her?
Oh, man. I don't wanna go there yet.
Some little girl smiles at him and then stops smiling at him, his little heart melts.
I guess the real question is what impact that'll have on his blood sugar.
Know? That's Gonna make it go
up. Yeah.
Yeah. Yeah. For sure. Yeah.
He's gonna he's gonna definitely oh my gosh. Wait till the dating happens. You're in for so many problem. I mean, joy. There's so much joy coming your way, guys.
Something to look forward to.
Oh, you're gonna have a great time. And then when it's over, you get old really fast. It's awesome. And then the panic of not being able to afford to retire hits you, and then it's just a sprint to the end. So Oh,
it's all positive.
It's all just it's all just really rainbows and and and and you know
All good things. All good things.
Yeah. You know, you there's never a bad moment, actually. You're in the best time right now, my opinion. I love I I I'm I I like this time a lot. Like, there's something to be said for
We are.
You know what I mean? Or, like, the feeling that you're still building and all the possibility exists and everything. I like this older part too where you're more friendly with them and it's easier, that kind of stuff. But, you know, the the time ticking kinda puts a damper on this part a little bit.
Yeah. Gotcha.
Yeah. I don't wanna be a bummer, but, like, finite, etcetera, and so on. And Yeah. Yeah. But this part that you guys are in, like, really try to I guess my point is is, like, do your best to enjoy it because it is pretty awesome, actually.
Yeah. You.
I appreciate that.
No. Of course. Do we get the other kids tested? Are we worried?
We we did the
We did. A
little while ago.
Go ahead.
I was gonna we we had the the one test where they can check for the markers. I forget exactly what they call that. You know more about it, me. But we they were they were negative at the time. But it's been, what, Michelle, probably been a year.
So we'll we're trying to keep in tune with it.
I mean, you got good news. I wouldn't look at you.
Yeah. We did it right after
Carter's. Yeah.
I'm not yeah. Fair enough.
Sounds like I don't need to know. Where is that where you're at on that? Don, do you figure you know what it looks like? If it happens, you'll see it?
Yeah. I think so. I mean, I would would there be benefits of maybe having an awareness that it might happen, I guess. But, like, we've now been through it. You know, I hopefully, we get to a little bit early this time.
Yeah. And we also have all the tools to check the blood sugar whenever we want. So if we get concerned, we can we can jump right to that and not have to wait to go to the doctor.
Yeah. If you if you do you think there'd be consensus between the two of you if another child had had an antibody and someone said to you, we can give them TZLD or something like that. Would there be consensus between the two of you about what would be the right thing to do there? Have ever thought about that? Do you know what that is?
That's yeah. That's the one that I can I
think so?
Right? Yeah. Michelle's like,
I definitely think he'd agree with me. But go ahead. Yeah. Yeah. You you would try it, Michelle?
Whatever Michelle says, we would do
it. Yeah. No.
I I think we
You broke up, Michelle. I'm sorry. I think Don's
We talked about it with Eva because our oldest daughter was the only oh, go ahead, Don.
Oh, no. I'm not just trying to speak. Is your connection okay?
Yeah. I think our connection's messed
up. Michelle.
That's it, Don. We finally finally alone. Finally quiet, Don. You understand?
Well You
you know, I'm just teasing. She's lovely.
She was joking. No. No. It's all good. No.
We had talked about that. I I think we would have to, I guess, find out a little bit more about it. We know it's an option. We would we would probably say yes to it, but I guess we would, you know, in that situation, do a little bit more homework, make sure no we're getting into.
Yeah. No. I mean, I would I'd feel the same way. You know, it depends. Like, sometimes they they talk about, like, well, it could push it off for another year or maybe more.
We don't know. Mhmm. But I always wonder, like, what else what else do they think that med does that they haven't been able to prove yet. I'm I'm interested in where that goes, know Yeah. Over time.
Well, we definitely lost Michelle. I was gonna wrap up, and now she's just gone. Michelle, you can't hear us. She's there.
Also messaged that she I I think we have to get the kids from camp. I think we've come up on our
Well, Don, you say goodbye.
Our
time. And we'll just I'll pretend to be Michelle. I'll be like, thank oh, there she is. Hold on. I was gonna pretend to be you, Michelle, and say thank you.
Are you back? She's not back.
No. She faked us out.
She's in and out.
She's out.
Okay.
Well, I can I can say thank you very much on behalf of both Michelle and I? We really appreciate your time this morning and and chatting with us.
I I Can
you hear me?
Now you're back. Michelle, say goodbye before you disappear.
Sally. Am I back?
Yeah. What's yeah. Oh, Don, this must feel so empowering to you.
Well, I she was nervous before. Now she's gonna be embarrassed. No. She's you
know, this afternoon. Embarrassed. It's fine, you guys. You have poor what do
you have? You so much. We really appreciate your time.
Michelle, thank you, and get off T Mobile. Okay? I don't know what you're doing. Alright. It.
In the car.
Go get your kids. I'll talk to you later. Thank you so much. Alright.
Thank you so much, Scott. Really appreciate you.
Take care. Alright. Take care. Bye.
Bye.
To learn more and see if you might be able to get Twist from the pharmacy and try it for free, head to visit.twist.com/juicebox. That's visit.twist.com/juicebox, or give them a call at 18774. That's +1 (877) 489-4478, and tell them Scott sent you. Twist requires a prescription and is indicated for people with type one diabetes six and older. Arden has been getting her diabetes supplies from US Med for years.
You can as well. Usmed.com/juicebox or call (888) 721-1514. Many thanks to US Med for sponsoring this episode and for being and for being longtime sponsors of the Juice Box podcast. There are links in the show notes and links at juiceboxpodcast.com to US Med, Twist, and today's other awesome sponsor, the Eversense CGM. They make, of course, the Eversense three sixty five, and that thing lasts an entire year.
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#1939 Good at Talking to People - Part 2
Good at Talking to People (Part 2)
Part two of Elizabeth Maddock Dillon's interview with Scott: why storytelling works when instructions don't, what he thinks doctors can and can't do, and the three things he's actually trying to say.
Jump to a moment
- Storytelling is the method, not a style choice. Elizabeth, speaking as a literature professor, names what the podcast does: stories rather than formulas. Scott agrees flatly — our brains don’t work the other way. He argues the reason a phrase like bold with insulin spread is that listeners pulled it out themselves; his job is to keep collecting stories so people hear an idea in whichever words finally land.
- His read on why clinic visits fall short. Scott is blunt that a twenty-minute appointment can’t deliver what a running conversation can, and he’s critical of endocrinologists who don’t raise new technology or dismiss the impact of fat on blood sugar. He’s explicit that this isn’t doctor-bashing — they’re people with finite time who can’t hold everything — and that the answer is to build on what they tell you, not ignore them. This is his opinion, not medical advice.
- Elizabeth’s own story lands the point. She describes firing an endocrinologist after learning about a pump from the podcast rather than from him. Asked whether he’d planned to mention it, he said no — it wasn’t his job to cover every new technology, and she had told him six years earlier she wanted injections. Her position: an A1c a doctor calls fine isn’t the same as one you can’t improve.
- Agency versus compliance. Picking up a recent episode with Erica Forsyth, Elizabeth argues that being compliant is close to the opposite of exercising agency — following orders instead of working out what fits your life. Scott adds that he doesn’t plan episodes; he calls his own not-knowing the engine of the conversation, and Elizabeth offers him a kinder term for it: beginner’s mind.
- The whole thing reduces to three goals. Get your settings right, pre-bolus meals when it’s appropriate, and understand and cover the impact of your food. Scott describes himself as a guy walking a hundred yards ahead with a lantern, calling back — not an expert handing down rules, and he says plainly that he does it because it helps people and it still pays the bills.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact, the three things Scott names as the whole point.
- Mental wellness series with Erica Forsyth — Including the agency and anxiety conversation Elizabeth references.
- Juicebox Podcast Facebook group — The private community discussed here — 85,000+ members and busy around the clock.
Every word of the conversation
Cold open & sponsors0:06
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. What do you say we get you over to t1dexchange.org/juicebox and have you fill out that survey? Are you an adult?
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Storytelling beats a formula2:22
Two things. One is the storytelling. I mean, I'm I'm speaking here a little bit in my hat as a literature professor, but that storytelling is a way you know, that's different than giving somebody a formula. Right?
It's the only thing that works. Our brains don't work the other way.
Exactly.
Yeah. Yeah. Our brains do not work the other school. Listen. I'm not a conspiracy theorist, but school is made up by the Rockefellers, right, to get the working class in line or something like that.
I don't exactly know. You should look into it yourselves. But what I'm saying is that, like, we don't learn by being sat at the desk and being told to remember that on July, blah blah blah, in 1877 like, that's not how we some people work that way. Most people don't. Most people do not wanna be told about things that they actually care about.
You think people care to talk about their diabetes? No one cares about that. You wanna I listen. Ask me to to boast for a minute.
Please boast
for a minute, Scott. Longevity longevity is hard. Okay? I'm very proud of doing this for so long at a high level that reaches a lot of people. It's really hard to do.
Longevity, and a permitted boast3:28
Okay? I am pivoting constantly. My pivots have pivots. Okay? Like, I am I'm dancing between the raindrops, making this thing work for all of you.
And the rest of it is that I found a way to be stupid and silly and smart all at the same time. You can't tell if I'm a moron or a genius when you're listening to this. Okay? So because of that, no one's put off by me. Smart people assume I'm smart.
Less smart people assume I'm one of them. Everybody in the middle thinks I'm, like, I I'm not anybody. I don't talk down to people because I don't have it in my heart to do it, so nothing feels like a lesson. I'm not a teacher. I don't understand any of this technically, so I can't come across as a school mom.
Like, it's a perfect mix. Also, I don't have type one diabetes, which for people listening who are bothered by that, please take that as a superpower in this space because I am not held down by the psychological issues that people living with type one diabetes have. So I can continue to be a thoughtful person out in front yelling, this is the path. I don't care if you're sad. Follow this one.
Not having type 1, as an advantage4:31
This one leads out. Right? Like, you I won't get caught up in it because I don't have it. Like, I'm not does that make sense?
Oh, it does. And and, also, I mean, there's so many parents who obviously are are dealing with the question of how do they help their child, and and that's and that experience is is hugely important too.
Yeah. No. But yeah. Exactly. Exactly in all of it at the same time.
It's not it's not me. It's us. That's why there's so many episodes so that it can be that that's why my end goal is to just I'm I'm telling you, the last thing I do is I'm gonna leave a prompt. It'll be at juiceboxpodcast.com, and it'll be an AI brain that can literally ping this entire podcast. That's the last thing I do when I'm done.
And I'm gonna leave it behind, and I hope you all use it. Until then, we gotta keep collecting people's stories because people find different ways to say things, and they don't always hit the same way. Like, I might say something, and it doesn't make sense to you. But then I might have a person on who says the same exact thing in a different way with different words and different feeling. And then you go, oh, I get it now.
Why it takes this many episodes5:43
And and that's why this and because the way social media works, Elizabeth, you can't just make I use this as an example all the time. If the world was a fair place, Mash would be the last TV show we made because Mash is perfect, and we don't really need another TV show. Okay? But it turns out people don't do that. They want another new thing and another new thing.
I'm sure the iPhone eight is probably a fine phone. Do understand? But this is somewhat humans do. Humans make things, and humans want new things. And they want them quickly, and they want them now.
And the Internet and the way it works now is exasperating that times a million. And it it worries me, and it fills me with hope at the same time. It fills me with hope because I there's a way to reach you. It worries me because now everybody thinks they're an influencer, and there's so much content in the world. You can't find the good stuff.
And that's me saying that I think my stuff is the good stuff, but that's neither here nor there. I've also think there's a lot of other good stuff. It's not me. I'm not saying that. But there's a lot of chaff too.
Right? So how do you separate the wheat from the chaff? Is that one of those? That's a saying. And so, see how I did the smart thing, but then made myself look dumb at the same time, Elizabeth?
It's it's very it's a skilled thing I know how to do. Then I and then I break the fourth wall for you, all in the same sentence. I might be a genius. Don't tell anyone. Okay.
Now listen. So we have this stuff going on here where everybody thinks they're a content creator now. And so everybody's attention is being fractured and fractured and fractured. Why is that a problem? Because 4,000 diabetes blogs was too many diabetes blogs, and now there's none.
Four thousand blogs, then none7:13
Okay? And if you tell me, oh, no, Scott. There's one still. That's nice. I don't know about it.
And if I don't know about it, it's a lot like saying it doesn't exist as I'm pretty tied into all this stuff. So point being is that somebody started by the way, they're lovely people. Carrie, Scott, George, those are the first three diabetes bloggers I can think of. I was probably in there in that year or two making one as well. Handful of other people, ten, twenty, 50.
I don't know how many. Hard to keep track back then. No way to know. There were people that did it before me is my point. I didn't know who they were.
I never read their blog before. I wasn't copying them, but I wasn't the first is my point. And people did it really well. Those that would have been enough. Maybe add twenty, fifty, a 100.
We're good. We're done. We got everybody's voice covered. 1002, 3,000, 4,000. All it does is separate your attention and give a person the feeling, I can't keep up with any of this, so I'm not gonna keep up with any of this.
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Use my slink. Use my slink. Use my link to support the podcast. That's US Med Dot Com Slash Juice Box. Now let's talk about the Tandem Mobi insulin pump from today's sponsor, Tandem Diabetes Care.
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When you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's gonna help you learn about Tandem's tiny pump that's big on control. Tandemdiabetes.com/juicebox. The Tandem Mobi system is available for people ages two and up who want an automated delivery system to help them sleep better, wake up in range, and address high blood sugars with auto bolus. And then all those important voices that we're helping people are gone because they can't make a living at it, and we all need to eat and turn on the lights. And so that becomes a problem.
I make a podcast. I think there's an argument to be made that everything inside of this podcast is probably everything you need about type one diabetes. I think it's all in there. But since I started, and I do think I was first on the diabetes podcast thing, I've looked pretty hard because I don't wanna just say something like that flippantly. I believe the ADA had a podcast a year before me.
In fairness, I think they've only gotten a million downloads in, like, the last ten years combined, which is not nearly as much as I do. So they might have had it first, but it hasn't really reached people the way I'm reaching them. There were a couple of blog talk radio shows that were short lived. I don't know if that's a thing people know about. People used to pick up their telephone in their house and call each other, and it would record on a third party system somewhere, and you could download the audio from it.
So people were making, like, blog talk radio shows. Some really cool people did stuff like that back in the day. I'd been on one or two at the time. And but they didn't last very long. They weren't great delivery systems.
But other than that, January 2015, I start up. It doesn't take a month and a half for someone else after I start to have the bright idea to do it too. And I stopped. I don't count, but I've looked in the past. And I haven't looked since I got to a 150 people who started a type one diabetes podcast.
It is has started and gone defunct since I started. And there are still there's some out there that still exist right now. I don't think they publish at my rate. I would call them more of a hobby, like once a week kind of a thing. I'm aware
The numbers behind the show12:06
So how many how many listeners do you have now?
I don't know how to tell you that. Apple Apple won't share that with me. Oh. I can I can tell you that since I started, I have just about 22,000,000 downloads? Wow.
Yeah.
So And how about on Facebook?
Facebook, we have over a 100,000 people. There's 85 well, it's more than that. I guess there's 85 or 86,000 currently in the private group, and I think another 30,000 follow me on the public page. Yeah. That Facebook group is, unto itself, its own beautiful place.
That Facebook group does between, like, a 120 and a 160 new posts every day. It does 8,000 likes, hearts, and comments combined every twenty four hours. It adds a 150 new people every seventy two hours. Wow. It's really it's an awesome thing.
For people who like Facebook, it's really a fan it's a fantastic thing.
Yeah. I I spend time on there. I mean, I I'm more of a lurker lurker than a poster, but I Most people are. I learn a lot.
Yeah. No. Most people are. What let me tell you one last thing to contextualize that, and you can answer your question. Rough numbers.
4,000,000 podcasts have been registered. Only 800,000 publish at least once a month. Of those, only 80% do no. On of those, 86% are doing a 136 or fewer downloads per episode. So 86% of 4,000,000 wait.
No. 4,000,000 86% of 800,000 podcasts get a 136 downloads on an episode. So that's, like, another 14% that actually do enough downloads to interest an advertiser. And of those people, the Juice Box podcast is in the top 1%. For clarity, the 1% above me make me look like I have a hobby.
Does that all make sense?
Yeah. No. It's it's extraordinarily impressive.
Yeah. But go ahead. Give your give your give your next question, please.
The loop that actually needs closing14:17
Okay. So I have this theory about diabetes. This is speaking as a as a diabetic that there's a lot of language about closing the loop between, you know, between the the the CGM and the artificial pancreas, whatever the pump, what that looks like. I think that the loop that actually needs to be closed is the loop between the doctor's office, the pharmacy, the insurance company, and the patient because that's where the the connections are being lost and and dropped. And that's one of the reasons why I think your podcast is so valuable because you are making all of those connections and giving people the information of, like, how do you actually live with this disease and not just you're a number on a script and here's some more numbers.
So I I I wanted to invite you to talk about how you think about your your place in the ecosystem of diabetes care.
Why doctors are at a disadvantage15:23
Yeah. Doctors' offices are a disadvantage as are doctors. So the thing that makes you a good doctor is not the thing that makes you a good podcaster. Right? When I wrote that book and I went out and I did my media for it, the editor called me one day and she's like, these interviews you're doing are so good.
And I was like, no. They're not. Because, again, I always think I'm messing up. Just I'm I'm I'm never happy with what I'm doing. It's always like, I'm always have an eye on making it better.
I was like, they're not great. I've messed up here. I shouldn't have said this. I went on too long here, like, blah blah. And she's like, these are the best author interviews I've ever heard in my life.
And I was like, what are you talking about? And then she says to me, people who write books are not generally good public speakers. And she's like, the the the, you know, the thing in you that makes you sit quietly and write a book is not the same thing that wants you to, like, project yourself in front of others. And I was like, oh, I didn't realize that. She goes, yeah.
You're the only one. Like, she's like, we bring authors to things. They stand there with their heads down. I went to a book fair one time. You must know about these.
They're like Yep. Yeah. They're like garage sales for authors. And, like, they happen in these big buildings. There's thousands of authors there with their books on their tables.
Right? I went to one once in New Jersey. It was really great. I brought a table. I brought all my books.
I brought a stool to sit on. I put the books on the table. Five minutes into it, looked around, and I thought, I'm not gonna sell one book, and any and no one else here is either. And I grabbed a handful of books, got out from behind the table, stood in front of the table, and at lunchtime, left, didn't have any books. The guy next to me goes, how did you do that?
And I was like, I'm talking to them. You're waiting for them to talk to you. I was like, you're doing this wrong. You gotta go get them. Stand up.
Go explain the book to them. Tell them why it's good. Tell them why they might be interested in it. And if they don't care, don't just turn your head to the next person and tell it again. I think you're not gonna no one's gonna come get this information from you.
I don't care what's in that book. It could be the secret, the goddamn life itself. They're not gonna do it. And I'm telling you this is the same problem. That lesson learned that day helps me with the podcast immensely because doctors think they have the answer.
And if you don't ask them for it, then you don't care about your own health. They're noncompliant. They're not motivated. I told them they didn't listen. That's all bullshit.
None of that's true. They don't know how to talk to people. Right? Or they're or they're restricted by I don't know. Whatever they're restricted by, by the the people they work for.
I think most doctors don't tell you how to use insulin because they don't want you to have a seizure and then blame them. Yeah. I think that most of them don't know what they're talking about to begin with. I've talked to endocrinologists who have been endocrinologists for thirty years who will stand there and tell me, I don't think fat impacts blood sugar. I'm like, yeah.
I don't know how you could be doing this for thirty years and not think that. I don't know how I can be the first person to say we're saw method to you, and you go, what's that? Doesn't make any sense to me, but they're everywhere. Right? But but it's not doctor bashing.
They're people. They're just people. Right? They they can't possibly know everything. They can't keep everything in their head.
They can't possibly restart the same story every twenty minutes going from room to they get exhausted. They also are being cheated on by their husbands and by their wives, and their kids are a giant pain in the ass, and their basement just flooded. And, like, they all have lives too. They they're not computers. And you go to them expecting them to spit out everything perfectly in a way that you'll understand and can take home with you, and that's just not going to happen.
You need the conversation running19:04
You need the conversation. You need it in the background just happening so you can hear it because you don't have enough time to sit and listen to 1,800 episodes of a podcast. You're obviously right about that. But if you pop this thing on a few times a week, I bet your a one c goes down to the sixes. And why does it matter how that happens?
Why do I have to quantify it for you? All I know is that being involved keeps you involved, and you end up doing better. That's what I see over and over again from people all over the place. And there is no functional way for a physician to do that for you. It just doesn't exist.
It's not the paradigm. We doctors are great when you break your leg. Right? Doctors are great when you go in and you go, look at this thing in the back of my throat. What is this?
Oh my god. Strep. Here. Take this for seven days. Drink this.
Do that. Take an Advil if you get a fever. You're gonna be okay in a week. They're great at that because that's the thing that medicine knows how to do. And that's the thing that human beings can communicate to each other.
And still, by the way, it doesn't go that well because people get home and don't take the medicine or they feel better in three days, so they stop taking it. They get sick again or they get bored or they get distracted or their floods and or whatever happens to people, right, which doesn't keep us moving in the right direction. The only thing that works is storytelling. That works. That changes how you think of things.
When when it's 02:00 in the morning and you don't know what to do and an idea just pops into your head like, oh, the guy said to trust what I know was gonna happen was gonna happen. The I've got diabetes broken down into t shirt slogans. Not because I wanna oversimplify it, but because that's all we have time for. It's all we have the the ability to absorb. And by the way, not everybody is working with the same deck of cards.
Right? Like, if again, if you want me to boast, I can I don't know who I'm talking to, and they're all having good outcomes? And a doctor would tell you, well, I need to know all about you before I can even tell you what to do. I say that's wrong. No.
Wrong. You just need to boil it down to the basics so that anybody can pick it up. And I again, I apologize if people have heard this before, but I think this is just for you at this point really, Elizabeth. But, like, we can't least common denominator people's health. Like, you can't look at human beings like there are 20 kids in a classroom and say, hey.
Look. There's three really bright kids in this room. There's 10 pretty average kids in this room. There's five that are a little dumb, and we got a couple of real morons over here. Okay.
Like so okay. That's about how this works. We're gonna teach to the morons? That doesn't make any sense. Like, in in a in a in an attempt to not insult anybody, we've eliminated helping 18 people.
That's ridiculous. That's just ridiculous. It's ridiculous in a school setting, and it's ridiculous in health care and anywhere else in between. Just say the stuff that works and give everybody a chance. You know what I mean?
You know you know when you're watching a movie and the, and there's an impending, natural disaster coming and there's always that scene where the president says, well, if we tell them, there'll be panic. And another guy goes, they all deserve a chance to get away. You know that scene, Elizabeth. Right? Right?
Yeah. We all deserve a chance to get away. Okay? No one's gonna panic when they hear about prebolising. Some people will do it wrong, and some people won't.
And they'll all be fine, and they have doctors, and they can go talk to them before they do whatever they can do. But to hide that information to people, going back to that person who was crappy to me the day I started that podcast, you're gonna hurt people telling them how you take care of your daughter. I think you're gonna hurt them by not telling them how to take care of them. That's what I think. And I think that asking yeah.
Go ahead.
I agree with the with you know, when you're told that you're you're told to essentially keep your blood sugar high all the time just in case you go
away. Today, Elizabeth, so you can die horribly tomorrow. Awesome. Exactly. What a plan.
Exactly. Thanks for the help. Really appreciate it. Where do I leave my co pay? Is there a lollipop I can steal on the way out?
Because I'm not feeling good about this. Like like, this is just whatever ridiculous way to help people. I don't want you to die today. Yep. I want you to die in a tragedy in ten years.
How about I would rather die today trying than go down like that? That's how I think about it. Now you don't have to think about it that way for the people listening. I wanna be clear. I couldn't possibly care less how you feel about it.
Do whatever you want. I am a live and let live guy. You want a guy that believes in American freedom? You're talking to him. Do whatever you want.
Smoke cigarettes through your nose. Shoot heroin into your eyeballs. I don't care. Don't do it in front of me and lead me the hell out of it, but do whatever you want. Okay?
Having said that, for the rest of you, I'd like it if you knew how to take care of yourself. I'd like it if my daughter knew how to take care of herself. I'd like it if after I'm gone, some shitty endocrinologist doesn't ruin my daughter's life after I put this much effort into it. I want everyone out there with the information that they need and their permission to do something about it. Do you know if people still don't feel comfortable changing their settings?
It's insane. It would be like if I told you I'm gonna set your thermostat at 67. Don't touch it. If you get cold, call me, and I will get back to you in a couple of weeks and let you know if it's okay to change the thermostat or not. What are we talking about, Elizabeth?
These are adults.
Yeah. I I feel like my endocrinologist well, you know, I I have had some experience with not great doctors, let's say. But they they see my a one c, and they're like, oh, that's fine. Like, no. No.
It's not. You know, I can do better, and I would like you to help me figure out how I can do better. But I feel like, you know, I checked some box for them, and they're onto the you know? It's it's good enough for them.
Paradigm doesn't work for your situation. Right? It would work if you broke your leg. Yeah. They this this isn't what medicine's not made for this.
It doesn't work this way. This is this is square peg round hole stuff. That's why they that's why they say that stupid thing to people. One day, sooner than you think, you're gonna know more about this than I will. Well, that's not comforting at all.
You're the doctor. Why don't you find a way to know more about it than me and then tell me about And the answer is either I don't know. I'm not able to. I don't have time for that. I don't care enough to.
I can't understand any of this because I don't live with it. I don't give a shit what the answer is. There's a lot of different answers to that question. But when someone says that to you, it's a false it's a false sense of security. What it what here's what they mean.
A doctor means, I don't know anything about this. And in a couple of months, you're gonna know more about it than me because I don't know anything. But what people hear is, I'm a doctor. I'm super duper smart, and anything you learn in the next month is gonna make you even smarter than me. Imagine how smart that makes you.
So you're all done because you know more than a doctor. Like, that's how people hear it. It's not what's meant, and it is not how it works out. Do not be comforted by the fact that you know more than your doctor about something that they don't know anything about. That's ridiculous.
And, again, bad communication. That's why the podcast, again, is very important, and it's important to have it in a long form and not to be all, like, nicey nice the way other people make their content. Like, it's important to really talk about it so that you can understand what's being said. What's being said is your doctor mostly look. There's some great doctors out there.
I've met them. But far and away, coin flip, you're gonna end up with an endocrinologist who doesn't know their ass from a hole in the ground. Okay? And when that person is in charge of your lifelong health and how your life ends, you might want to ask some more questions and make sure you're doing the right thing. And I'm not saying ignore doctors.
I'm saying ignore people who don't know what they're talking about or just build on what they've told you. Yeah. But don't just sit back and go, everything's gonna be fine because the guy said it was okay, because the guy is a heroin addict, and you don't realize it. Go find the Coldwind episode where the doctors are selling drugs out of the backdoor of the of the doctor's office, and just remember, those are somebody's endocrinologist. Okay?
Like, everyone's not perfect. You gotta take this from me, Elizabeth. Trust no one. Do you hear me? No one.
Don't even trust yourself some days. You understand?
The endocrinologist she fired27:26
Well, listen. This is here's a true story for you. I I fired one of one of the endocrinologists I fired along the way. I went to see him, and I had learned about the Tandem IQ, the new Tandem IQ at that point, from from your podcast. And so I was on I was on MDI.
And as I said, my doctor was like, oh, your, you know, your a one c is 6.4. Good enough for me. You know, which is
Nothing wrong
with fine. But
Nothing. But go ahead.
I felt like I could do better. So so I said, you know, I'm interested in this Tandem IQ, this this pump. And said, do you think that would work well for me? And he says, yeah. We we could give that a try.
And I said, well, were you were you planning to tell me about this? And he said he said, no. I I and I said, why not? And he said, well, I can't tell you about every kind of new technology that comes down the pike. There's so there's
so much you doing? And
exactly. And then I said he said, it's not my job to do that. And I said, that is exactly What
is your job then? Did you
ask him that? You said,
well, what the hell is your job?
I I said, yeah. And he said, well, you told me you wanted to be on MDI. And I said, that was six years ago. This technology
didn't exist. In 1976. What has that got to do with anything? Yeah. Yeah.
That's that that story is perfect. Yeah. That everyone should hear that and say to themselves, oh, I'm in charge of me and no one else no one's coming to help me. Right? That's it.
Yeah. And listen. Yeah. Apply that to your whole damn life. You want another secret, Elizabeth?
The whole podcast is just based on common sense. This is how I run my life about everything. Okay? Like, just just use common sense. If you don't have common sense, I god bless you.
Borrow mine. Okay? Mine works pretty good. Trust me. I'm doing okay.
Okay? So, like, just listen to me. Take care of yourself. If you don't know how to do it, go find somebody who does, and then write down what they say to do, and then go do that thing. There's no you don't have to reinvent the wheel.
There are plenty of people who know what they're doing. Just steal their ideas. And by the way, don't have to steal them. I'm trying to give them to you for free. Also, tandemdiabetes.com/juicebox.
Use the link. Support the show. I just, but seriously, when I joke about stuff like that, I am mostly joking, but I'm not. You like this long you like an hour and thirty minute conversation with Elizabeth about this? You like the thing you heard yesterday?
You like the thing you're gonna hear tomorrow? You didn't like the thing you like tomorrow, but you like the thing you got next Friday? That takes money and time. Two things that people don't give me for free. You click on those links, you support the advertisers.
The advertisers buy ads because they're reaching you, and I get to keep having these conversations. That's the point of this. Like, remember when I told you I wasn't gonna tell you about a story about a conversation I had with an advertiser?
Yeah. Let's hear the story.
“You want me here”30:31
Get to it eventually. I'm such a good storyteller. I really my stuff do you ever really pay attention, Elizabeth, how I, like, I I I talk and then I bring it back? I always bring it back bring it back. It's a it's a natural gift.
But I'm I'm having a conversation with an advertiser recently about doing some renovations on the bold beginning series. So remastering it, maybe adding an episode to it, turning it into a thing. And, and we like to do that once in a while because the way podcasts are set up, I can't make an entire 25 episode series and put them out one week after another. There's a number of reasons why I can't, and there's a number of reasons why I wouldn't want to. So but every once in a while, they get lost in the sauce.
Like, I don't even know what episode is the first episode of the bold beginning series anymore. I know the bold beginning series is very popular, but I also know that there are a lot of people who can't find it. So once in a while, we like to take the series that people really enjoy. And I'm talking about, like, Omnipod five pro tips, the pro tips, bold beginnings, small steps. These things have been downloaded hundreds of thousands of times.
Like, sometimes you like to put them back out again. But that takes money. So you wanna refresh them so they all sound like modern audio, and you gotta get somebody to buy an ad on that so you can do that. It's a little look behind the thing. Right?
Now takes a lot of money and a lot of effort to get that done, and it's possible that the juice isn't gonna be completely worth the squeeze if you buy the ads on these things because there are gonna be plenty of people who look and go, I've already heard the beginning series, and they're gonna skip it when it comes out. Does this all make sense so far, Elizabeth? Okay. Thank you. Absolutely.
So while I'm selling an ad on it so that I can do this thing, because my goal is to put out the bold beginning series as episode 2,000 and, like, and put them in chronological order so people can find them there like I did with the pro tip series at episode 1,000. Anyway, this is what I'm doing. So I'm talking to the advertiser that has the interest. They came to me. They asked what they could do.
I gave them the idea. They like the idea. Blah blah blah. I'm not sure the whole juice is worth the squeeze thing because of what I said, etcetera, and so on. And then I said this, you want me here.
That's it. I'm an adult. I'm doing a thing that other people don't do. I have a cohesive community of helpful, thoughtful people who are out in the world helping each other. People with diabetes are doing better because of the thing I make.
I can't do it by myself. Buy the ads because it's the right thing to do. That's all. There's no business sense behind it. I'm not gonna sell you on that your ROI.
I'm sure you'll do fine, but I can't promise you three times ROI. I can't I can't. I don't know how to do that for you. I was like, all I can tell you is that I've been doing this thing for twelve years, and it's a movement. And it reaches far more people with type one diabetes than anything else out there doing something like this.
And when you go into that group on Facebook, what you're gonna see overwhelmingly is a group of really thoughtful adults helping each other and a lot of scared people being brought along kinda quietly. You're gonna see me on a cruise talking to people. Why? The cruise doesn't make any money for me. I have I've done that cruise for two years in a row.
I don't think I've made $500. That's not the goal of the cruise. The goal of the cruise is to help the people on the cruise, make me better at talking to people, and to do the same thing that those Omnipod ads did in 2015. What was that, Elizabeth? It adds legitimacy.
And why do I need and why do I need legitimacy? So that people will find it and people will listen and they'll learn to get their settings right and they'll learn to time their insulin and they'll learn to think about the impact of their food. Because all I'm trying to do is help those people. That's the thing I was talking about earlier. When I started making the podcast, I started making it for Arden.
And at some point, I realized it could be for everybody. And now that's the driving force behind my professional life. Timing and amount, settings, food impact. Take care of yourself. Don't wait for other people to come help you.
Be positive. Follow a path of people who have gone before you who are successful. I that's all I think I am. I think I'm a guy with a lantern who's about a 100 yards ahead of you. I'm not allowed to stop walking, but I can keep yelling back and say, hey.
I'm here. Follow along here. Follow me here. And then one day, you're gonna walk off that dark path into the sunlight. You're gonna wave to me, and you're gonna walk away into the trees.
And I'm gonna lead the rest of the people, and we're gonna keep doing that over and over again. But only if you click on the links so that they buy the goddamn ads so that we can make the thing, so that I can retire one day and my wife doesn't yell about me that I don't have a job because I'm an adult man who makes a podcast. Try to imagine being married to a guy who makes a podcast. Okay? It it it's not fun, Elizabeth.
Alright? Like, I don't I don't have a real job. I'm an adult that doesn't have a real job. And you'll say, oh, no. It is a real job nowadays.
Sure it is. It's not. Okay? I'm an I'm a I I make a podcast. For the love of God, it's ridiculous.
Okay? But it help it it works, and it helps people. And so my argument to my argument to them was, you want me here. That was it.
Well, it it it works for me. It's it's certainly been working for me, which is which is why why I'm here.
I'm glad. I'm happy. Like, I trust me. I don't know what else I would do with this stupid superpower I have. Like, I mean, can you imagine me trying to, like, do this in the real world?
I would get fired from a corporate job inside of five minutes probably. As a matter of fact, I don't know how I make it through some of the meetings I have because I don't, like, stop. I don't I I've never once seen something ridiculous in a meeting and not brought it Like, why are there seven of us here? That doesn't make any sense. Like, I first five minutes, everybody pops up on a video.
I'm like, I don't understand why there's so many people here. What do you do? What do you do? What do you do? Why are these people here?
And they're and and people are looking at me. I'm like, this is ridiculous. I was like, we're just talking about ads on a podcast or talking about how to message something. I was like, there's seven people. They they can read a transcript of this.
They don't need to be here. I'm like, I don't wanna talk to all these people. I'm like I'm like, I don't I don't wanna do that. Oh, can you fly to I'm not flying to Chicago. I won't I swear to god.
I the company called me. They're like, come out to Chicago. I'm like, I won't I'm not doing that. I was like, we can do it from here. I do not need to leave.
Well, we'd like to meet you in I I don't care. I'm not doing that. That I couldn't possibly keep a real job. So I don't know how the rest of you do it. God bless you.
Like, I I every time something silly happens in front of me, I I say it out loud like I'm five years old. I I don't know why we're doing this. And, you know I'm sorry. I cut you off. Go ahead.
Agency, and the word noncompliant37:10
No. There's just there's one more one question that I really want to touch on, which we sort of been touching on all along. But I the episode that you did one of the episodes you did recently with Erica Forsyth, I think it it was called agency and anxiety. And I I really think that that idea of agency is so important, and it's something that the podcast as a whole really does for people. It's a version of the be bold with insulin and take this care into your own hands.
But one of the things that that you and Erica were talking about is that having that sense of of agency, it makes such a difference in your, I don't know, in your frame of mind and in your ability to take care of yourself. And it's kind of the opposite of when you go to the doctor, that phrase noncompliant, which really irritates me. Because if you're compliant, you're in a way, you are not exercising agency. When you're exercising agency, you're figuring out what works for you and how to make it work for you and how to live with this disease. And that's different than just following orders.
It's it's incredibly important. It's also points out what I was saying a second ago. Like, I don't like, that was my idea, but I don't remember it. And I know it wasn't that long ago. Like, I I wish that I wish that I hope that this conversation illuminates for you and anybody who's interested enough to listen to it that I'm not doing any of this on purpose.
I'm just doing what occurs to me in the moment. And by having a big community around me and listening to voices and hearing conversations, stuff pops into my head. I go, that's important. We should talk about that. I don't understand what that is, but I know that's important.
I know this is maybe sounds pompous, and I hope it doesn't because I really can't contextualize it for you. But agency and anxiety and blah blah blah and all that stuff, like, at some point, I had a thought. I jotted it down. I texted to to Erica, and I said, Erica, listen. I I there's something here.
We should talk about this. Feel free to, like, pull your thoughts around it together, and she does, by the way. She like, Erica's episodes are like, she she struct she puts a structure together for them, and I don't look at it. Just so you know. Like, she sends me notes, and I don't you can hear it when we're talking.
Sometimes, like, I I get to an idea, and I know she looks at me like, did you read ahead? And then I look back at her like, I haven't read any of this. You're just doing a good job of leading me through it. That's how I know it went well. Because when we get done, I look at her notes, and I realize we cut we hit everything in her notes.
And all the teaching points were there because I got taught it while it was happening. I'm the avatar for you listening. Does that make sense? Yeah. And if I Yeah.
If I educate myself about it before I start, then it's just two eggheads talking to each other about agency. And that's what I don't think works. I don't think that becomes conversational. And so my stupidity or whatever you wanna call it, ignorance, lack of understanding of the the subject, I'm what my ignorance is what drives the conversation. And what a and what a does it
You know, there's another nicer term for that. It's beginner's mind.
Elizabeth, that's much nicer. I'm just trying to point out that for whatever reason, I don't know what the reason is, I guess the big picture, I started I started my life in a pretty deep hole, like, parentally, financially, opportunities, everything. Anything you hope for your children to have, I didn't have. Okay? And I've done pretty well for myself in in I don't mean financially.
I mean in a lot of different ways. Like, I've drugged myself out of that hole 10 times over. And if I stopped to write my own autobiography, the only thing I could tell you is is that when decisions need to be made, I very frequently make the right decision, and I don't know why. And I'm not saying there's not a better decision or a different decision. I'm just telling you that when I'm met with adversity, I traverse it.
I get past it. I don't think about it again, and I usually beat it. And then I've just taken that, and I've overlaid the diabetes on top of it. And that's how I'm building the podcast. Does that make sense?
Mhmm. Good.
Because it doesn't make sense to me completely. Only because I think I've never taken time to contextualize it because that would be a waste of my time. It does
Well, I think you found your medium clearly, you know, that the that the podcast works, and and then you have enough of a deep commitment to it to to keep making it work when it when it
stops working. I just
You know? You just To do the pivoting. Pivoting.
Like like, oh my god. Nobody does this anymore. Doesn't matter. We don't need that anymore. That's where everyone dies, by the way.
Everybody who who hung their flag on blogging, they're gone. Right? And they they they didn't pivot fast enough. People who wanna start a podcast but don't understand why people listen to podcasts, your podcast is going to fail. I'm not here to be a bummer.
It just is. You don't have whatever it is. Like, whatever the juice is to do that thing, to know what to say, when to say it, how to say it, when to stop saying it, when to say something new, blah blah blah blah blah. Most of you don't have it, and it's not an it's not an insult. It's it's numbers.
4,000,000 people thought they could make a podcast. 4,000,000. Only 800,860 of them actually accomplished it. They only accomplished it once a month. They only reached a 136 people that month.
That's it. A 136 people. You know how many times you'd have to get reach a 136 people to get to 22,000,000? It's the the number's big. It's a lot of times.
Okay? So how do you take a boring thing that nobody really wants to talk about and make it educational enough and entertaining enough to draw not just people back over and over again once they find it, but to get them to go out into the world and share it with somebody else and have those people enjoy it such that they would go do it again, listen again, listen again, listen again, and go share it with people, and have the nerve to walk into their doctor's office and say, hey. I know you said I'm doing better. I just wanted to let you know it's not because of anything we didn't hear. I found something called the Juice Box podcast, and it helped me.
You know how much nerve it takes to tell somebody that and then how much nerve it takes for those doctors to start sharing it with other people because they realize that podcast is probably a better way than me for them peep that we are breaking barriers down left and right and left and right. And I only said we because I thought it was immodest to say me. But if we're being truthful, it's me. It's me and how things occur to me to do that are making all of this happen. And I don't know why it works.
I don't care why it works. I am just happy that it does because I got an email from a lady from Zimbabwe who said that her kid is better off because I make a podcast. And a lady in England and a nice woman named Elizabeth who's writing a book about sugar and everybody in between, it's not a it's not a brag. I I I hope I hope everyone realizes that when I walk away from this microphone, I won't think about this again. I only can think about it because you got me talking about it, and my brain's warm now, which is also another thing I can't describe to you about myself that I know.
That my my thoughts flow better when my head warms up. Like, I if you listen to me on the podcast, like, I have to get going. Like, you if you even listen back to this, when you brought up the going to the doctors thing, I guarantee you my speech patterns picked up since then because you lit me on fire. Like, I'm I'm warm now. Like, now I could really do a two hour podcast.
Like, if we just jumped into it right now, and I now I could really go. So and, again, it's a dumb it's a dumb skill. If it wasn't for iPhones, the Internet, and cheap microphones, I'd be the most popular greeter at Walmart.
But I also think we we work better in community as in conversation. You know, we're we're social beings. And and so that's another thing I love about what you've been saying is that part part of what makes this work is that you are really talking to people, not Yeah. You have to reach to yourself. If you don't was
a mom of mask, then what are we doing? I might as well yell out the goddamn window and hope somebody across the street has diabetes. Like, it's not like, I don't I don't fault people for trying, and they definitely should. But, like, when when this thing is set up, the structure of this is set up the way it is, most of you are not gonna succeed at reaching a a mass group of people. Also, I couldn't do it again on purpose.
A lot of it's time and place. Like, do you know what I mean? Like, it's a lot of it's time and place. COVID helped a lot. Time and place and COVID.
I pivoted better than other people during COVID. So what I heard podcasters say during COVID was nobody's gonna be in their cars. I'm not gonna make as much content. And I said, I'm gonna make more content because people don't have anything to do. So when when when the common theme was back then is, oh, podcasts aren't gonna do as well because people aren't commuting.
I was like, screw that. Here's three a week. And then they listened to three, and I went, here's four. And then somebody said, what am I gonna do on Friday? And I went, you know what?
You make a lot of sense. Here's five. Okay. And so, and while other people are like, well, they're not in their cars as much. They won't need podcasting as much.
That was a moment in time. Like, that's not a decision that people would make today because now they have hindsight. What I'm telling you is for reasons I don't know, that in that moment when the common wisdom was make less, nobody needs it, I was like, that's wrong. Make more. And so yeah.
And I was wrong.
You were right.
I've been wrong about things too. I I I once I shaved my arms once one summer, and I dyed my hair blonde. These were bad decisions as a teenager. Okay? Also, I just shaved my arms once to see what it would feel like.
It was neat, but there's a lot of upkeep. I let it go right back immediately. Point point being, Elizabeth, is that, like you know, I'd go back to that thing. I I don't know why it's working, but it is, and I don't think we should touch it because I am having an impact on people that I could not have imagined. And it's an impact that that I don't think has been seen yet in this space and for this and for this group of people.
And so
I agree. That and that's exactly why I wanted to meet you at the ADA because I thought you I really think you're doing something that that no one else is doing, and, again, that's having
a real impact. Very much. And I feel weird actually, I don't wanna lie to you. I don't feel weird saying it. I just know that I shouldn't be saying it out loud.
I know somebody else should be saying it. Like, the right thing to do would have been, well, let you talk about it. And then but then I would and I would have been like, oh, you're so nice, but it's bullshit. Like, let's just be clear about it. I don't know why it's happening.
It works. Let's not argue about it. And but the one thing I do really wanna reiterate that is it's important to me for people to hear is that it it only means something to me in the context of reaching you and helping you and building a thing that helps me understand diabetes better so that I can help my daughter better so she can live a better life and all of you can live a better life too. I will not think about this again when we stop recording this today. I am not a person whose ego or self worth is built on any of this, and no one's gonna believe that.
There's a few people who are close to me who know it's true. And other than that, I I I I don't care. Like, I don't run around going, I make a really popular podcast. I just I'm glad it's out there, and I'm glad I'm glad that whatever it is that I am in conjunction with this thing is leading to people feeling good. That's all I care about, and I don't spend time in it.
I do not think about it the way you would imagine I would. I have a very regular life outside of this. And so it's it just I don't know. I get I don't know why I have what I would consider to be a caregiver's heart. I've pontificated about it before.
A caregiver’s heart49:37
I'm adopted. My adopted parents got divorced when I was younger. I raised my brothers. I have a just I I really care about people, and I don't even know why. I I I when somebody got me a reptile the first time, my first thought was, oh, I have to take really good care of it.
I can't let it have a life that's, like, less than it could have if I didn't know all the stuff. And I don't mean to, like, take Elizabeth and a chameleon and put them in the same bucket, but I feel the same way about you, Elizabeth. Like, I don't want you to, the worst thing I I'm sorry if this is pivoting or it feels like I incompleted my thought, but I think this builds on it. I always have this, like, feeling in the back of my head that there's something I don't know, and that if I knew it, things would be easier or better or more complete, and that we should go find that thing. I have a fear that there's a medication in my house that I already figured out to get, but didn't figure out how to use.
I always I'm worried that I've heard something on the podcast that would help somebody, but I haven't figured out contextualize it in a way such that they'll understand that that would be helpful to them. Like, that's the kind of stuff that eats at me. And I don't I don't want the worst thing I can think of, Elizabeth, is you have a a health issue. I know the answer to it, but I don't know to say that answer out loud when you present the issue to me. So we keep talking, keep digging, and keep conversating so that it falls out eventually.
I hope that all made sense, but, like, that's kinda big picture, though. Somebody should just run this through AI and ask AI how it is I think about making a podcast because it would probably be a much clearer description than the one I'm able to give verbally.
Well, something that you just said that that I think is really important is is that continual desire to learn more. I think too many people think they know the answers, and so they don't listen. And they don't and they don't learn from other people. And it sounds like you have you know? And and you can hear it in your podcast that you're always like, oh, wait a minute.
How how does that work? Yeah. How did that happen? How did that? And and that's that's what we need
to my confidence with arrogance. It's not the same thing. I I really I'm super interested in people, why they do things, what they know. Sometimes they're not good at telling it, so I try to help them get it out. But I'm just infinitely interested in people.
Why they do things is just it interests me to no end. I don't even understand it completely. But I also don't think I know not only do I not think I know everything, I don't think I know most of anything. Like, I really like, I am such a again, like I said before, like, I I don't like, something comes up and I just know what to do. Like, my thought pattern is not the way you would think of it.
Like, I don't know how to, like, explain this to somebody. Like, you know when you say to somebody, do you have an inner monologue? Like, do you have an inner monologue, Elizabeth? Do hear a voice when you're thinking? I don't.
Yes. I don't have an inner monologue. You say something, and then I say the right thing. Trust me. The zombies come.
We're gonna be okay. Okay? You stick with me. We'll be alright. I don't know why I know what to do.
I just know that I generally do the right thing, and I don't have a thought process. So I I don't there's no, like, decision tree that I'm aware of. It's just the the first line of the decision tree comes out, and then the answer comes out. I don't see any of the tree in between. Does that make sense?
Okay.
In theory.
You but you see the tree.
Right? It's yeah.
Yeah. I don't know what's on the tree. I just know the answer. I'm not a genius. I'm not listen.
Elizabeth, my IQ might be a little higher than I say it is, but, like, I have no formal training. Okay? I'm just like my I I'm not good at math. I'm not good at anything that academics would would would measure as important. I just know what to do when something happens, and and I don't hear the steps in between.
So I'm always wondering what got me here. Like, how did I how did I start here and end up there when I don't understand any I just stop and think, and then the answer comes to me. Does that sound crazy, or do I sound like I'm bragging? Because I don't mean for that to be either of those things.
No. It doesn't sound crazy at all. I mean, it it sounds like you have you have figured out who you are, how your mind works, and how to use it for good.
That I feel like I've done. But I'm also telling you that, like, I don't know how the answer comes. I just don't question it. Yeah. And I just go.
I'm like, this is the right thing to do. Go. I just feel like I'm walking through a maze, and every 10 steps, I come to a fork. And I just generally seem to end up at another good place after I turn. And so I don't argue with it.
Yeah. And it and it and it's working so far. I'm sure I'll like, even when you I don't know. Like, I I I would highlight the thing you just said because I joke about it a lot. I hope the joke comes across, and I mentioned it here earlier.
But, seriously, you're all lucky I'm not a bad person. I'd have all your money. I just want you to know. I'd have your wives and your money and your kids to be cutting my lawn. I'd be one of those terrible people in the world that you look at and go, why are they doing that?
And the answer is they don't know, but they're just good at it, so they keep going. I just happen to care more about people. I just really want people to be okay. Like, I wanna be okay. I want my daughter to be okay.
I want my family to be okay, but I want the rest of you to, like, benefit from that somehow. And and I don't have, like, ill intentions for people. Like, I don't understand when people do things that are cruel or unfeeling. I got it's not a thing I can wrap my head around. It's just not a thing I could make myself do.
But I also understand that there are just people who are wired differently too. But the joking here is is you're lucky that this is how I'm wired because I have the skills to steal your house. I just wanna say. I just would never use it for that. Like, I'm definitely if you put me in a you know you know that, the Superman and then there's Bizarro Superman?
And, if if you if there was a Bizarro Scott somewhere, he's standing in your house and you're outside watching your wife cook dinner and he's laughing at you through window. And so I just don't have it in me. I guess if I did, this would be easier. Oh. You know?
But I I just like the way it worked out, honestly. I and I hope it's helping Arden or will help her in the future. Like, that's you know, I think Arden actually learns about diabetes the same way you guys all learn about the podcast, which is in the background with the volume turned a little bit down with things sticking to you that you don't really know why you understand and never sat down to take a quiz about. But you just sort of know what to do now. Like, that's how I
Well, there's so much to learn.
You can't just you can't just yeah. You can't send it all forward in in bullet points. It just won't work. Anyway, I'm sorry. Do you have other do you wanna rapid fire and I could limit myself?
Or I just wanna make sure you're done, and I want you to be able to get out of here.
You know, I actually have to hop off to
What do got on a job? Thing, Elizabeth. Yeah. Have you considered podcasting? It's much freer with your time.
One of those.
Much freer with your time. Well, actually, Elizabeth, I have a meeting in an hour too. So k. So I'm gonna go have lunch, and then I'm gonna come back and do my meeting. And by the way, the meeting is for something that does not make money that will only make the podcast better and is not a thing I need to do, but I am gonna spend time, money, and effort on it because I wouldn't I just want it to be better for you guys.
So there's go ahead.
Scott, can I just say you are allowed to make money? You should be making money. People should make money for their
work. Money.
You know? And they're working.
Don't think it's I don't think it's I don't like talking about money. I don't think it's a good idea. I just don't I just don't think it's a good I think if I make a dollar and you make 50¢, you're gonna be mad at me. And
Yeah. Yeah. Well, money's hard.
I what I want is for people to feel free to listen to the show. Nobody should have to think, oh, that guy, this is how he makes a living. And because it is, but that's not the point. Like, the point is is that here. I this is the best way I contextualize it in thirty seconds.
I know myself, and I know my skills, and I can make a lot more money, a lot more ways than this. I do this because it helps people. I enjoy it. I'm good at it. It makes me happy, and it still pays the bills.
If I stop doing this, I would be more successful. I'm pretty sure. But I just don't I'm in a position where I don't have to care about that because my wife also has a a is is a has has a good job. And so I don't have to try to ring every last cent out of all this. Not to say that I don't do well or that I'm not well compensated for the things I do, but I don't need to ring every red cent out of this.
I like doing this. And so I'm gonna keep doing it for as long as I can. And I'm not embarrassed to make a living from it. I just don't want people to feel excluded by that knowledge. I once saw a diabetes influencer driving around a really expensive car, and I thought, why are you showing people that?
That's just like, I can't take you seriously now. And I just don't I don't under I saw one of them doing it today. I'm at the I'm at the World Cup. I'm like, oh, okay. Why are you bragging to me about how much money you have and that you don't have anything to do on a Monday?
Like like, that's all I hear. You know what I mean? Like and so I don't want people to feel that way. By the way, you wouldn't think that way about me. I sit in this damn room for eighteen hours a day.
It's not glamorous in here. You would not be jealous of my life. But, you know, I just don't think talking about money is smart. So, anyway, I I I I I missed the world back when people did things like, you know, kept their mouth shut about stuff like that. I think it ruins society to know that some tight end makes $14,000,000 a football game.
Anyway, Elizabeth, go do your thing. I will put out an m p three for this. I won't edit a word out of it. I'll make a transcript for you. You can use it.
If I'm in your book or not in your book, I would completely understand either way. If you have follow-up questions, I'd do my best to answer them through email for you. And please send me a send me a copy when you get it printed.
This was Thank you. So far.
I'm glad you had a good time. I really appreciate it. You said it was fun. All I did was talk, and you and you were like, I'm I'm here too.
No. It's fascinating.
Nice. Alright. I'll get this to you by email as soon as I can. Alright. Okay.
Have a great day.
Care. Thank you.
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#1938 Good at Talking to People - Part 1
Good at Talking to People (Part 1)
Elizabeth Maddock Dillon turns the microphone around. An English professor writing a book about sugar interviews Scott about how the podcast began — the diagnosis, the accidental blog, and the day Katie Couric told him what he was good at.
Jump to a moment
- The roles are reversed. Elizabeth Maddock Dillon, an English professor at Northeastern diagnosed with type 1 at 48, is writing Sweetness and Ruin: A History of Sugar from the Plantation to the Diabetes Epidemic — part memoir, part history. She approached Scott at ADA to interview him for it; he suggested they record it. So this is Scott answering the questions for once.
- The diagnosis, told at length. Scott walks through it: Arden’s second birthday with a pony in the backyard, a misread bout of hand-foot-mouth, a car seat he reached into on vacation that was soaked through, and a meter that read HI. He describes standing in a 24-hour pharmacy wondering whether, if he never left that aisle, it might not be true.
- The blog was an accident. Frustrated that a JDRF walk raised only about a thousand dollars, he emailed 500 contacts a play-by-play of a day with type 1 — then realized he shouldn’t have and moved it to a link. He didn’t know it was a blog until a woman in England wrote to say it was helping her. His takeaway wasn’t flattery; it was that a stunt reached England in thirty days, so the ceiling was limitless.
- He deliberately refused the prevailing tone. At blogging conferences he felt like an outsider — a father writing about raising a child with type 1, not a person with it. His objection to much of what he read: it was woe is me rather than aspirational. His framing then and now — it’s nice not to be alone at 2 a.m. treating a low, but it would be nicer if the blood sugar weren’t low and everyone were asleep.
- The podcast exists because of one sentence. After a book deal he talked his way into (his wife’s response: “you don’t read”), he promoted it himself onto NPR and Katie Couric’s show. Backstage, Couric stopped him to say he was really good at talking to people. Years later, watching readership collapse as the internet shifted to images, that sentence came back to him — and he bought a microphone.
- Bold Beginnings series — Scott and Jenny Smith for the newly diagnosed — the series discussed here as due for a remaster.
- Diabetes Pro Tip series — Episodes 1000-1025 — the management foundation: settings, insulin timing, and food impact.
- Defining Diabetes series — Short episodes defining the terms people hear but don't have explained — an idea Scott credits to a Sanofi contact's online glossary.
Every word of the conversation
Cold open & sponsors0:02
Friends, we're all back together for another episode of the Juice Box podcast. What do you say we get you over to t1dexchange.org/juicebox and have you fill out that survey? Are you an adult? Are you a US citizen? Do you have type one diabetes?
Your answers on that survey are gonna help to move type one diabetes research forward. It will not take you very long. It will be a big help to me. It'll be a big help to you. It will help the community.
T1dexchange.org/juicebox. Hey. Nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. This episode of the podcast is sponsored by MiniMed and the Kontoor next gen blood glucose meter.
MiniMed, of course, the innovators behind the MiniMed flex system, a small, sleek, and discreet insulin automated delivery system controlled from an app. Nothing comes close to freedom you can feel. To learn more, visit minimed.com/juicebox. There is one blood glucose meter in this house, the Contour NextGen blood glucose meter. That meter is on my daughter's person right now and at all times.
It is incredibly accurate and waiting for you at kontoornext.com/juicebox.
The professor with the microphone1:36
My name is Elizabeth Maddock Dillon, and I am an English professor at Northeastern University of Boston. I'm a type one diabetic, and I'm writing a book that is part memoir and part history. The memoir is about my own experience being diagnosed as a type one diabetic at age 48, and the history part is about the history of sugar. So the title of the book is sweetness and ruin, a history of sugar from the plantation to the diabetes epidemic. And I am here because I wanna interview you today, Scott, because you have made such a big difference in my life.
Juicebox podcast has made such a big difference in my life, and I wanted to learn more about how it came to be and and your thoughts on making it.
Wow. I'm touched and excited to do this with you. You approached me at ADA and were telling me about this. And you said, you know, could I could we get some time for me to ask you some questions for the book? And I said, why don't we just do it and record it?
So I appreciate you being willing to do that. And, I mean, I guess I should just turn the podcast over to you and let you go. I can I ask you a couple questions first?
Of course.
Have you ever written a book before?
I have. I've written academic books, but this is my first book that is for a general audience. So the academic books tend to be fairly, shall we say, academic. But this is really written for a broad audience, and and I hope will be of interest to a lot of people, a lot of diabetics, and a lot of people interested in the the history of sugar.
Yeah. That's that's wonderful. Alright. Well, let's pretend it's your podcast then, and you can start asking me questions. Whatever you want.
I'll just shut up and answer. Go ahead.
Okay. So I, again, would just like to say thank you to you because the Juice Box podcast really changed things for me a lot. And the the reason why it changed things is because it it gave me the kind of concrete information and advice I needed about how to manage my blood sugar that I really was not getting from the doctors that I was seeing. And I feel like it's made a difference for me and for so many other people. So I'm interested in in both your own history and also thinking about why it's so important to have this kind of information.
So first question is, could you tell me the origin story of the podcast?
Yeah. Absolutely. And thank you. Those are very, very kind words, and they they they make me feel good about the the time I spend working, especially because my my days seem to be I I seem to get it with the what do say? The gifts with one hand takes with the other.
Mhmm. I just got back from taking a group of people on a cruise, and I woke up in the morning to a note from one of the people just letting me know how much the cruise was valuable to them and how their their child was having a better outcome already from being around the conversations and everything. And then I I swear to you, an hour later, somebody online was calling me. Like, you know, I was I was basically the ruination of the world. And I thought I thought, wow.
I I wish I wonder which one is is true. Neither? I don't know. So, anyway, it's nice to hear something nice, and I appreciate it. How did all this begin?
I mean, how do you want me to go back to I I mean, I can give it to you from the very beginning. You you'd like to have notes that you can really, like, dig into for your book. Right?
Yeah. And I would love to hear, you know, starting from Arden's diagnosis and what that was like for you and then how I'm assuming that, you know, that that is is part of that origin story and what led you to feel that making a podcast would be valuable.
Before: a pony in the backyard5:44
Yeah. Sure. Well, I mean, no differently than most people who come on here and share a little bit about the time that they or their child were diagnosed. It was you know, our lives were going along pretty well. We had dug ourselves out of some holes that our parents and our situations put us in.
My wife and I had a son. He was really awesome. And we decided to have another baby, and she was equally awesome. We were just living our lives. You know?
We had bought a little crappy house that had a nice little piece of ground out behind it. And for Arden's second birthday, we lost our minds. You know? We I think a guy came with a pony and gave the kids pony rides. The the Philadelphia zoo showed up with three I think there was an eagle here.
I think there was definitely a snake and an armadillo, and I believe there might have been an eagle or a hawk or I don't know. A a bird of prey. And just everybody I'd ever met my entire life was in that backyard. You know? And we were having the greatest time.
I can picture Arden on the pony. And even to the point where you guys all don't know me that well, but having a pony walk around in my backyard ruins the yard, and that's not a thing I would normally do. And on that day, I just I didn't care. It was just it was it was really Elizabeth, it was almost a celebration of Arden and a celebration of how far we had come all at the same time. Right?
And, I'm going to say the Kontoor Nextgen 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 MyLink 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 Nextgen meter is accurate. It is reliable, and it is the meter that we've been using for years.
Contournext.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 of the sponsors. When you click on my links, you're supporting the podcast and helping to keep it free and plentiful.
Somewhere along the lines of a week or two later, Arden got sick, but she had been sick previous. So previously, we were told that she had hand, foot, mouth. Mhmm. And it it appeared I mean, we didn't realize that it appeared it came back. She'd gotten sick again.
So it's after her birthday. We're sort of running around. We have a family vacation coming up, and I'm just making the rounds getting every because I'm this I'm a stay at home dad. So I'm the one, like, getting the laundry done, you know, prepping the house to leave, that kind of stuff. And this was a family vacation with my wife's side of the family.
So I took Arden to visit with my mom before we left. She's just two years old. Cole's in school. We take a little ride. I meet my mom at where she works, I bring the baby in.
I'm like, hey. We're leaving in a couple days. Just thought you might want to see Arden a little bit before we go. And then we get out to the car to leave, and I used to have a it was an SUV, and it sort of had a back gate that folded down. And Arden needed her diaper changed.
And I I laid her on the back gate, and it's so much different when you're, like, a stay at home dad. Like, ma. You know what I mean? Like, guys do stuff like that in places you don't expect, like, in parking lots and things. And I take her diaper off, and the the bowel movement is is bizarre.
It's like little round balls, and I'd never seen them look that way before, obviously. And the coloring was wrong so such that it made me, like, squeeze it. Like, I not with my fingers. I used the diaper. I just wanna say.
But they broke apart like dust. Wow. And I called her pediatrician, like, right then and there, and I brought her back. And he said, she has hand foot mouth again. And I remember him saying, that's really odd.
They don't get that twice. And then when I asked him to expand, he said it's like he's like, it's like chickenpox. Now you're like, get it, then you don't get it again. And I was like, okay. And I none none of us knew what that meant.
You know what I mean? But she seemed okay otherwise, and it was one of those, like, well, we'll see what happens things. Anyway, handful of days, week later, I don't know the exact timing, but it wasn't too long. We were in a car, in that same car, driving south to Virginia Beach. And about an hour outside of the house that my mother-in-law rented, we stopped for gas and drinks and stuff.
And my wife got one of those giant drinks, like the ones where you wonder, like, who buys those? You know what I mean? And not too long into the the the the last hour of the drive, Arden wants the drink. She had been off bottles for not long. We gave it to her and didn't look back.
We're just driving and music's on. It's warm out. I remember the windows being down, this idea that we had a week off that we like, that our lives were moving. You know what I mean?
The car seat full of water12:01
Mhmm.
Yeah. And we got there, pulled up in the at the house. Kelly started taking coal out of the car in bags, and I went to get Arden. And I I've said this before, but I reached down into the car seat to unbuckle the the buckles, and my hands went into water. Like, don't mean I don't yeah.
Like, I don't mean like a little. Right? I mean like submerged. And Wow. I thought, oh, she spilled this drink.
That was the first thing I thought. It was like this flipping like, oh gosh. We just got here. I gotta take this seat out of the car. I hope it's not in the seats of the car.
Like, you know what mean? Like, this whole thing. So I I pull her out. She's like I'm like, Kelly, here. Like, she's dripping.
You know? And I I unbuckled the whole chair because I I it's so, like, egregious. I'm just gonna, like, carefully take the chair out and dump it on the ground. And it felt like I threw a bucket of water on the ground. And then it hit me that it wasn't the drink that was in the seat.
It was it was urine. And I was like, well, that's crazy. Right? Like, absolutely crazy. But then you start doing the things that everybody does.
Oh, she just got off bottles. She's drinking more. Maybe this diaper doesn't blah blah blah. Do we have to get a better diaper? Do we you do all the stupid things that don't make any sense.
You know, they're not excuses. They're just like you're you're faced with something.
You're trying to make sense of it.
Yeah. That you've just never seen before. You know? And so you start going to common sense things. It would be crazy if, like, I walked outside, felt the sun on my skin, and thought, I probably have rectal cancer.
Like, you don't you don't like, you know what I mean? Like, you don't jump to, like, weird conclusions. So we're there a day. We try to go to the beach. Arden's sick.
She doesn't wanna go. I stay behind at the house. Next day comes, every I said I everyone went to the beach. I stayed back with her again. I tried bringing her out to the beach.
She stood there lifeless. I took her back. All she would do is eat and sleep. I think maybe the second night we were there, again, the whole family went to the beach. I stayed in the house with her.
And later that night, like, the sun went down and there was, like, an observatory nearby or something or a preserve maybe. And I said to Kelly, like, why don't the four of us go for a walk at the preserve? It's cooler now. The sun's down. And we're we're out there and everybody's trying to have fun.
Everybody's trying to, like, get Arden to, you know, like, joosh up a little bit. You know? And she just stood there. Like, she just stared and she stood there and I can picture her in, like, this little pink pair of pants with like a blue sweater on and and she's just so little. You know?
And we get back to the house. That didn't work. And six hours later, the whole family's playing a board game around this giant dining room table. Kelly's still in bathing suit, she's holding Arden. Arden's asleep on her.
And I, like, kinda talk across the room. I said, hey. I forgot to tell you something. Like, everybody's talking and having a good time and whatnot. And she looked at me and I said, I I forgot to tell you today that I thought Arden's breath smelled weird.
“I thought her breath smelled weird”15:10
She said, how? And I was like, I don't know. It was, like, metallic maybe or fruity. I'm not sure. And then Kelly's face just, like like, it appeared to, like, slide off her skull.
You know? And she just goes like, Arden has diabetes. And and then from there, you know, we did the thing. People have probably heard me talk about before. It's the middle of the night.
Went to a twenty four hour pharmacy to get a meter because we were you know, the Internet wasn't as prevalent back then. We had to steal Wi Fi from the house next to us to look up the signs and symptoms of of diabetes. And I remember finding a list of five things. I forget what they were. But the last thing was, like, with a blood sugar meter.
And so I went to get a meter. I found a twenty four hour pharmacy. And I think that that's the first time that all of this, like, hit me. And I I stood in the pharmacy. Like, I I found the meters.
Standing still in the pharmacy aisle16:09
I stood in front of them. I don't know what I was shopping for. You know what I mean? Like, so I'm trying to make sense of it. I figure out which one I'm gonna buy.
And then I think, well, she she she might have diabetes. If I just stand here for the rest of my life, will will that not be true? Yeah. And I really considered for a second just living my life in that aisle feeling like it would freeze time. You know what I mean?
Yeah. Absolutely. Yeah. And, obviously, that wasn't actually gonna work. Would have made a great Black Mirror episode, but it it wasn't actually, still patent pending.
That's a great idea. Nobody steal that from me. I live my whole life in the, right, in the pharmacy, and people come in and out. I get to experience their lives and do their conversations. This is easily an independent movie from the nineties.
Where's Kevin Smith when you need him? Let's make this one. Jeez. There's references all over the place. No one knows.
Anyway, Elizabeth, I go back, and we check her blood sugar, and then we head to the hospital. And, you know?
And what was her blood sugar? Do you remember?
It was high because I said to my wife I have the same dumb story everybody else has. I said to my wife, how nice is this thing? It says hi to you before it gives you the number. That's exactly that's what I thought was happening because it said HI.
Oh god.
Yeah. Wow. So I think on that meter, that meant over five hundred.
Oh my goodness.
Yeah. And she weighed at that point, we thought she weighed nineteen pounds, but she, by then, weighed seventeen. We didn't realize at the moment. Although looking back on it, it's insane not to notice the weight loss. She looked like a she looked like a runway model in the middle of the seventies.
You know what I mean? Like, she looked like she had a you she she looked like she had a heroin addiction and was smoking cigarettes twenty four hours a day. She was so thin. But, like, you don't see it in the moment. You know?
Anyway, we go to the hospital and do the stuff. They take her from us, and it's just it's debilitating. You know? I I I've I've said it so many times. I I feel weird just saying it now because it feels performative, but I really mean this.
After they took her from us, we had to go into, like, a little like, a family room, but it was to call it a room was even ridiculous. Was like a closet with, like, a two seater, like, plastic couch in it. You know? And my wife and I sat next to each other. My wife's still in a, like, a bikini with a sarong.
And we laid together, and I I I swear I could've I felt the desperation, like, like, the sadness, like, through her skin. I don't know if that was just me or what it was, but it's not a feeling I'd ever felt before. Like when I touched another person, know, yeah, I don't wanna you know, when you're you're close to somebody and you hold hands or you make love even or anything, like, when your skin touches, like, there's feelings that come from all that stuff. Yeah. I had never felt despair before through a person.
I said it was the first time. I don't know if it was mine or hers or ours. I can't I can't tell. I didn't know. You know, you fast forward ahead and we come home.
A thousand dollars, and not enough19:24
And I don't know how long it is before I realized that there's something dire wrong with my kid that I can't help. And it occurs to me to try to find somebody who could. And, of course, I identified a JDRF back then, and we, you know, went to a walk and tried to raise some money for the walk. And I I think I raised, like, a thousand dollars or $1,100 or something like that, but I really, like, kinda, like I beat the bushes. You know?
I went out. I explained to people what was going on. And then when it was over and I only had a thousand dollars, I thought, wow. Like, people don't understand this. Like, I I kept thinking, like, if they understood it, I'd be carrying around a billion dollars to give to the JBRF right now.
You know? And so that, you know, that that year happens, and it's 2006. And around 2007, I still feel like I'm not doing enough, and it occurs to me to, like, try harder with the walk. And I did something that I didn't call day of diabetes, and but I I just woke up one morning to an email, like, you know, contact list of over 500 people. And I wrote them a note, all of them, in the morning.
The emails nobody asked for20:41
I said, you know, our next type one diabetes, I'm gonna be collecting money again for JDRF. Today, I'm gonna send you an email every time we have to do something with type one so you can understand what a day of Arden's life is like. And I sent the first email and the second, the third. By the time, honestly, by the time noon came, I, first of all, realized I didn't ask any of these people if they wanted these emails. But just to realize if you're listening, have to realize the Internet was different back then.
We didn't know about stuff like that. And, anyway, I I sent the emails out, and then I apologized to them. And, you know, I spent the whole morning trying to figure out a different way to do this. And I just I had a an iMac computer for Apple geeks. It was the old like, the lampshade.
It's really cool. Like, little round base. And, anyway, they're great computers. They don't make them anymore like that. And I was picking around on it trying to figure out another way to do thing other than to bombard people with emails.
He didn’t know it was a blog21:40
And I I happened onto a program called iWeb that promised that you could put your thoughts on the Internet. And it was a blogging platform. I didn't really know that. Being, like, candid, I didn't know it was a blogging platform, but I used it. And I sent out one more email, and I said, hey.
Listen, guys. I realized I shouldn't have done this. I'm really sorry. If you wanna keep following along, you can go to this link, and I'll I'll post this stuff there. Which, by the way, I know now sounds like just like an like an obvious thing to do.
But I'm telling you that back then, like, blogs weren't really a thing. Like, there were, like, some WordPress blogs, and it was taking off, but it wasn't prevalent. You know? And I kept doing that. I started learning how to, like, put a picture in with it, a title, and, you know, write a little something, and I kept making it.
I did not have a counter on it, so I didn't know if anybody was looking at it. So, like, WordPress, you could do page counts with or click v or view counts or something, but iWeb didn't offer that. So I genuinely had no idea if anybody was looking at it or not. I was just making it.
So so let me ask you a quick question. When you say you felt like you weren't doing enough, did you do you mean you felt like you weren't doing enough for Arden, or you weren't doing enough for people in general with diabetes?
Yeah. Arden.
Arden.
Okay. I wasn't thinking about anybody else.
So you you felt like if you raise money for JDRF that, they would, do more research that could help her situation?
You don't know me, but I don't generally have a feeling that I can't accomplish anything. Okay. Nothing seems nothing seems out of the question to me. Like, I think that if I put if I had enough time and attention and sometimes money, I don't imagine anything I can't do. You know?
Okay. That tracks?
Yeah. Okay. You've been listening long enough. Yep. And so I I joke with people all the time.
Like, you should be very grateful. I'm a I'm a I'm not a crappy person because I have the kind of the motivation that turns makes cults and, you know, steals your money on on pyramid schemes. Like, I've got that kind of energy. I just use it for good. So but I could definitely like, I I swear to you, I know this probably sounds crazy, and I'll I swear I'll get back to the story really quickly.
But twelve years, 1,900 episodes. I think I am one of fewer than 200 people who has accomplished that many podcast episodes and that much time making a podcast. I have a online community of hundreds of thousands of people. And if you get me into a quiet room and ask me how I'm doing, I will let you know all the ways I'm failing at this. But I don't feel failure.
It's just an honest assessment that will make sense, hopefully, contextually right here, that I don't have enough tools. I don't have enough supplies. I don't have enough hands. Because if I did, I'd I'd reach every living person with diabetes. Like, I know how to do it.
I just don't have the the structure to do it with. Does that make sense? So I don't feel like a failure. I just know there's
Yeah. I mean, it it makes sense. I I was trying to go back and listen to episodes that I haven't heard, and I quickly realized there was no way I was ever catching up.
Well, if you try hard enough, Elizabeth, then don't break my
heart I know. Head.
Okay? And some people do.
Clearly, I have the wrong attitude.
So yeah. You don't have you don't have a can do attitude like I do. Okay? Loser. Now go write your books.
No. So so so anyway, like, I I just don't nothing feels like enough because I'm trying to help Arden. Like, that they're like, I don't know another way to put it. Like, I I grew up flat broke. I own a house now.
Right? Like, I can afford my food. I can pay my bills. No one taught me to do that. I just wouldn't not let it happen.
Does that make sense?
Absolutely.
Okay. Alright. So I feel the same way about Arden and her health. I eventually end up feeling that way about all of you too, but I guess that'll come out in the conversation. So a month into writing on this this website that by the way, I think this is important to note.
It wasn't like ardensday.com or juiceboxpodcast.com. It was literally iweb.something.com forward slash, and then I'm not kidding, maybe 50 characters, ampersands, and, like like, you guys don't know about the Internet if you're if you're too young, the way it started. So, like, you couldn't Google it. It wasn't findable through Google. It you had to literally have this link.
If you did not have that link, you were not on that blog, which, by the way, I didn't know it was a blog still, until a month later when I received an email from England. And this woman in I don't remember where in England, but she sent me a note, and I don't know who she is because back then I didn't know to keep stuff like that. She said that my blog is helping her and her daughter, I think. Her and her child. I'm not sure if it was a son or daughter anymore.
A stranger in England27:10
And then during that conversation, she said about how much my blog was helping her. And I thought, I don't have a blog. That's that that was my reaction when I when I saw that. But my takeaway was that I bombarded 500 people with an email, and I don't know anybody who lives in England. That was my takeaway.
I do not know anybody who lives in England. I do not have an email address from anybody who lives in Europe. My dumb stunt reached England in thirty days, and then that was it. Then I was off to the races. Like, I once told my wife, don't know how to make a million dollars, but if somebody would give me a million, I'm pretty sure I can make 50.
And, like and that and that's how I felt when I realized that woman was was in England. I was like, oh, son. Let's go. Like, I I
That you're re you're really reaching people.
Yeah. Oh, not just that, but, like, it's limitless. It's from a computer. Don't I even have to go build a wall or dig a hole. Are you kidding me?
I know how to work. You know what I mean? Like, I I can do this. So
You're making me think of that that dial up noise.
You know? My god. Listen. You don't know torture till you try to download a photo on dial up, and thirty minutes into it, realize it's not the goddamn photo you wanted. And it's only an eighth downloaded, and you gotta stop it and start over again.
And then when you click on the next one, realize, oh god. This might not be the one I want either. So you know that pain. You don't know the Internet. Yeah.
So I just start going. I just I I open up I probably have this my whole life, but there's a pathway from my heart to my mouth that doesn't have checks and balances. Right? So I just start writing about that. But I quickly realized I can't I can't make it about Arden.
And no disrespect to people who do this, but, like, I didn't wanna write a blog about my daughter. I wanted to write a blog about what it was like to raise a child with type one because I didn't think it even back then, I was like, I don't know. I've never seen one child star turn out well. Like, I don't wanna put this flashlight on her. You know what I mean?
So I started writing what it was like to be a stay at home dad with a daughter with type one diabetes, and I just kept going. And for years, I did it. And this is gonna be before, like, the the advent of, like, Facebook too much. Like, I was just writing that blog. And some some pharma companies, insulin companies, and device manufacturers back then, like, they they were just starting to understand, I think, the power of what was going on online.
And they're they'd have a couple of, like, blogging conferences. I wouldn't get invited to those. I think I was, like, maybe one of the only men doing the thing. And but eventually, my thing just kept getting, like, I guess, more and more I don't know even know how to measure it. Like, I wanted to say bigger, but that's only theoretical from my perspective because the damn thing didn't have a counter.
Thirty-sixth out of four thousand30:10
Until one day, I got a note from a woman named Laura. I won't give her last name, and she worked at Sanofi or Sanofi, depending on which snooty way you wanna say it. And she asked me if I'd come in to their New Jersey location for a lunch meeting about my blog. And I don't remember when this was anymore, but it was a number of years into it. Anyway, we get to the cafeteria at Sanofi, not to a luncheon.
It would have been nice to go to a restaurant. I just wanna point out, but that's okay. We were in the cafeteria at Sanofi, and we sat down. And she put reams of paper in front of me. Again, this is how long ago it was.
Like, piles, stacks, and folders. And she starts saying, we've been looking into diabetes blocks, and, you know, we've been doing a lot of research on them. And I I pointed to all the paper, and I said, that's all the research you've done on diabetes blogs? And she said, no. That's the research we've done on your blog.
Was like, I thought, how is that even possible? There were so many pieces of paper there. Anyway, she goes on to tell me that there are now over 4,000 type one diabetes blogs in the world. 4,000. But she doesn't but that's not how she tells me.
She tells me by saying this, would it surprise you to know you have the thirty sixth most popular diabetes blog in the world? I said, sharp as a tack back then I was. I said, that would only not surprise me if you told me there were 37 blogs. And she said she and she said, there are over 4,000. And I said, well, then, yes, that surprises me.
That was it. That's how I found out I was a popular blogger with a with a one of one of those plastic lunch trays in front of me at the Sanofi cafeteria with a lovely lady named Laura who was trying to build a diabetes community online. She was tasked to do that.
Did you get yourself a T shirt that said I'm 36?
No. I didn't. Because I hope you know from just this half an hour conversation two things. A, this isn't gonna just take an hour, and b, I all I thought was how the hell did 35 people get in front of me? Exactly.
Yeah. Yeah. Once I once I wrapped my head around. Once I stopped being, you know, like, what's that thing when people pretend to be, like, humble? Once I did that once I was doing Humble brag.
Yeah. Once I once I was done going like, oh my god. Only if there's 37, I thought, how are these other 35 sons of bitches getting ahead of me? And so so, anyway, like, that's it. I started to understand my my reach, I guess.
And then it just started to, like, come together. But I want people to know back then, like, there were people, like, taking free products to write blogs. I didn't do any of that. Like, I just I just wrote the blog. I didn't I I actually told my wife, like, I wouldn't even take, like, a Google Ad Sense ad because I thought, well, then how will people know, like, why I'm writing the blog?
You know?
Like What did what does Sanofi want from you?
At that point, I think they were just fact finding. They were looking for ideas. By the way, everyone's always coming to me. Forget Sanofi, and don't and don't put this on one person or another. This happens to me all the time.
People get me on a call and then ask me what they should do. I'm like, am I consulting for you? Feel free to send money. You you you know what I mean? Like, they don't know.
They they they have an idea. She she she worked really actually, she was lovely. She tried really hard. I think Sanofi actually they bailed on it at some point. But actually, one of the things she did I should give her credit for.
One of the things she did is why the defining diabetes series exists, because she created an online dictionary for diabetes terms, and I thought that was brilliant. So I stole that idea and called it defining diabetes and did, like, short episodes, like, defining each term in the podcast. Thank you, Laura. That was real it's a it was a great idea. People don't understand the terms they're throwing around in their own lives very often.
The rooms he didn’t fit in34:23
So, nevertheless, I started getting invited into blogging conferences, and it soon became obvious to me that I was either going to fail miserably or be the only one who succeeded. Because everything I said in those rooms was met by people going like, weird guy. Don't get him. Don't like it. That was the vibe I got back mostly from people.
My favorite story is that one of them I don't know how many hundreds of bloggers they invited to this thing. But they went around the room and everyone introduced themselves. This is gonna sound like a brag, but I don't really care. And they went around the room. Hi.
I'm Elizabeth from doing diabetes. Hey. I'm Bev from diabetes defines me or I'm like, everybody was like know what mean? It's like sweet and sugar and blah blah. It's going around the room.
Right? And they got to me. I was like, I'm Scott. I make a blog called Arden's Day. And somebody from the next table over said, Arden's Day.
How are they gonna know it's about diabetes? And I said, how are they gonna tell the rest of you apart? And then people didn't like me again. So I was like, okay. I think I was I was definitely in a subset because I think people with type one didn't like that I was writing about diabetes and I didn't have it.
And I get that, but I wasn't really writing about diabetes again. I was writing about being the father of a child with type one. But but neither here nor there. People were cordial. I don't want you to, like, misunderstand, but I was not brought into any inner circles.
I wasn't part of the part of the fun. You know what I mean? So but I didn't care. That's not I I couldn't possibly have cared less. I chugged along, did my thing.
And then were what were they doing that was so different from what you were doing, would you say?
I I don't mean to I I I certainly I think everybody's stuff has value, and they're if they find somebody and it helps them, I'm I'm all for it. But the biggest takeaway I had back then was that I felt like everybody was woe is me or this is so hard or it was always that. It was never aspirational. It was always, like, let's all get into a boat and fill it with our tears and see if we can sink it. It's how, like, the stuff felt.
And the more Yeah. The more it was like that, the more popular it ended up being sometimes. And I just had this I had a very clear thought. It sticks in my head. I think it all the time while I'm making this.
It's nice to be up at 2AM treating a low and realize that you're not alone, that there are people all over the world doing the same thing. But wouldn't it be nicer if the blood sugar wasn't low and we were all sleeping? That's that's how I thought about it. Like, I I like the the I don't know. Like, you know, written from the heart, this is hard.
I'm not saying it's not. Like, please don't get me wrong. I'm not saying it's not hard or it's not sad, and I've got enough tears to fill a boat. I'm not you know what I mean? Like but I don't know what value that has twenty four seven.
And then I started noticing that there was this thing called diabetes blog week, this lovely woman put together. And I'm gonna forget her name too. Damn it. I'm so sorry, everybody. I'm so bad with names.
But I decided to get involved in it one year where the I think they gave you a writing prompt one day for five days, and everybody wrote to the same prompt. And there were a lot of diabetes blogs. And I wrote my thing, and then I thought, oh, let me just bang around, look, and see what everybody else wrote. And then I realized everybody wrote the same thing. And then that made me think, well, why do we need 4,000 of these if everybody's gonna write the same damn thing?
Mhmm. So I am gonna make sure that no matter what I say, it's not what somebody else would say. Right? Because that that that was another moment for me that that I I would call, like, seminal for me.
You know, when I when I was diagnosed and I was first trying to figure out figure out, like, you know, how do I manage this unmanageable thing and all of the elements of it. And I I just I made this rule with myself that I wasn't going to complain in my head to myself. I wasn't gonna I like, every time I said to myself, oh, this is too hard. This sucks. I was just going to say, okay.
Stop it. And the reason for that was that I just felt like I didn't that wasn't gonna help me, and I it wasn't the way I want to live my life in my head. Yeah. You know?
Yeah. I think the therapist would call that, like, having positive self talk. Yeah. Yeah. Yeah.
But if you if you listen. I'm in the middle of a bad professional moment right now. It's like it's a back end thing, and I could easily I could easily stack up five very real thoughts in my head and make myself sad about it. But instead, I'll stack up five paths forward, and I'll set upon doing those things. And, you know, I just I just shared with Arden this morning.
I said when I I I always feel bad about like, when you see people who are struggling, it's it's terrible. It feels hard to, like, to help them. And I I said to Arden, like, I always say the same thing, I hope it's valuable to people. When you're going through something terrible, I find it valuable to look back at other terrible things I've gone through that are over now and to tell myself that this thing that I'm going through right now is not good, but one day I won't remember it. And that that's sort but but if you sit and think about it constantly, you can't leave it.
It's it's like that you know, it's a I I don't know. I don't read enough, but, you know, there's a lot in literature about, like, rooms you can get into that you can't get out of and time slows down and you never leave. You know what I mean? Like, it's that that's what that is. Like, you just have to set a path out and take a step on it.
And then take another one, and they suck, and that's fine. But one day, the path will be behind you and you're on your way again. So, anyway, I just didn't listen. If if you want me to be critical, I didn't like the tone that a lot of those blogs set, and I didn't wanna be a part of it. What I wanted to be a part of was this is how this works.
This is how you get out of it. Here. Do these things. Let's get free of this thing. Right?
I always tell people I have the worst business model because my business model is to find you, which is incredibly hard, and then talk you into believing that I might have something valuable, which is also incredibly hard to do. And then my goal is for you to get so good at it that you leave me and don't listen to my thing anymore. I'm I'm the worst business person in the freaking world. I ended up I this no. You know, I'm not gonna tell you that.
Never mind. And I was about tell you about a private conversation I had with an advertiser, and I'm pretty sure that's not a good idea. And so but I'll I'll prob by the way, you don't know me. Maybe you do by now, but I'll probably end up telling you that story twenty minutes from now. So so, anyway, I have another moment where an acquaintance of mine, Leanne Callantine, gets to write a book.
“You don’t read” — the book deal41:36
It's it's called Kids First Diabetes Second. And she wrote a diabetes blog that was pretty popular back in the day. Wish I could remember the name of the blog. I don't think I do right now. Anyway, she wrote a book, and she contacted me and asked if I would write a sidebar about she liked something I'd written about, like, how to deal with schools around diabetes.
She wondered if I'd write a sidebar for her book. So I did. And then not long after, her publisher contacted me and asked me. I think they just called me to see how I wanted to be attributed in the book. And just so you guys know, like, I to to to know how little the popularity of it means to me personally, even though you're not gonna believe that if you're listening, I really only care about making it bigger so that it helps Arden.
And even that it helps all of you guys is secondary to me. I'm happy about it, but I'm trying to help Arden just so everybody understands. I'm still doing that thing I set out to do. Anyway, they got ahold of me, and they were like, you know, how do you wanna be attributed in the sidebar? And was like, how don't I just put my name on it?
And they're like, well, don't you want, like, a web address in there? I was like, yeah. It's not really necessary. And they they were like, no. Don't you should put your URL in there.
I was like, yeah. I said if you guys want to, I don't care. Like like, it's I just I thought it was nice, but my real takeaway was that's not actually gonna help anything. Like, even when you guys like, when people make posts online like, I'm watching this one organization right now that does diabetes stuff. They are overspending on production, making this really great looking stuff.
No one's looking at it. And then and then their their reaction to no one looking at it instead of stopping to do it is to just post it more. And I just sit here giggling to myself. I'm like, no one understands how this works. Like, putting my URL in a book sidebar is not gonna make my podcast bigger.
Like, it it it makes me more, what's the word, legitimate in the space, but it doesn't reach people. And that's what I care about. Like, I get like, nobody reads.
Sorry. And what reaches people?
People who need the podcast so that they can come on and tell their stories so I can learn something, and then everybody else will hear it. And maybe my kid will benefit from it. Is no one paying attention to what I'm doing, Elizabeth? It's so like like, I just need people to come on to build this compendium of ideas. That's how I think about it.
And and, obviously, now twelve years later, you guys all mean more to me than you can possibly understand. And I'm thrilled at how far it's reached and and who it helps. I I'm about to put up an episode with a mother from Zimbabwe who listens to the podcast. So it's touching beyond words. I'm literally not good at putting it into words.
It's overwhelmingly positive, and it makes me feel amazing. But I'm not good at talking about that. I'm I'm better at this part. So I I anyway, I'm on the phone. And what I really wanna know from this from this from this book What was she?
She was the is she the editor? Yeah. She's the editor of the book. And I said and she helped run the company. And I mean, it's sort like a publishing house.
You know? And I said, hey. Question. How did she get this book deal? She goes, well, we're always looking for blah blah blah, she's going through the whole thing.
I was like, gotcha. Okay. I kind of stopped and she goes, your sidebar is very good. I said, thank you. She goes, do you ever think of writing a book yourself?
And I was like, no. No. No. I'm not a very good writer. And she goes, no.
You're a very good writer. And I was like, I I don't. Like and, Elizabeth, you don't know. Like, I I I I didn't I didn't pay attention in school. You know what I mean?
And and so she says, well, we'd love it if you wrote a book about diabetes for us. You know? And I said, no. That's not a good idea. And she said, why?
I said, well, it won't be evergreen. And I also am not confident in my knowledge such that it should be written down. And, but I could write a really good book about being a stay at home dad, I think. And she said, let me see an outline. So I hung up the phone.
I'm only gonna tell this part because I think you'll appreciate it because you're writing a book. I hung up the phone, called my wife. I said, hey. I think I might have just gotten a book deal. And my wife goes, to do what?
I said, I'm gonna write a book. And she goes, you don't read. And I said, I don't think we should let the details get in the way. So and she's not wrong. I don't think I've read 10 books in my entire life.
I'm that's not a brag. I'm just I don't read. So, anyway, I said, no. I'm I'm gonna get off the phone with you. She said, can you do it?
I was like, yeah. I said, and if I can, I'll just give the money back. Like, I said, they'll they're gonna for they're gonna give me money in advance. I was like, we'll put it in the bank. Don't touch it.
If I can't write the book, we'll send them back the check with an apology letter. Done. Right? And my wife's like, whatever, man. I'm like, okay.
I gotta go back to work. She's like, I have a real job. And I was like, alright. So she hangs up the phone. I sit down and hammer out a glossary, basically, or just an index of ideas.
Basically, like, liners about what I think of. Like, the the story is front to back. I look at it for a second. I go, that's good. I start to write an email.
It's been an hour since I got off the phone with the editor. And I was smart enough to stop myself and go, she's probably not gonna take me seriously if she thinks I wrote this in an hour. So I sat on it for five or six days, then I emailed it to her. And then she said, this is great. We'll pay you $5,000 to turn in a manuscript.
And I went, okay. So I worked the next six months for $5, which, by the way, I could have sold pencils on the street corner and made more money. And my son often comments that I was maybe the worst stay at home dad while I was making it writing a book about being a stay at home dad. But but I wrote the book, got it to them. And this is a long way of saying that eventually the book comes out, people really like it.
It's been reviewed well, etcetera. But I'm not famous, so the publishing company doesn't put any effort into publicizing me. And then as I'm talking to them more, it comes very apparent to me that they had an author drop out on their slate, and they had a book they need they needed to put a paperback out that that in that quarter or something like that. Like, it was just, like, structurally a thing they had to do. And because I didn't trip over myself making the sidebar, they thought, well, we'll let this chucklehead write the book, and then we'll get it out.
Except I confounded their expectations and wrote a book that they really liked, but they still wouldn't put any money into publicizing it. So I did it myself. I got on NPR. I got on Katie Couric had a a web show on Yahoo, maybe. I got myself on that.
Katie Couric, and what came next48:28
I got myself a bunch of, like, print stuff. The NPR thing was just for my ego. That was just great. Like, I just enjoyed that. And but I did this this thing with Katie Kirk.
I went up to Manhattan. I think we were in the CBS News studios that they were, like, repurposed during the day. So, like, his office is full of people working at CBS News. I'm sure they fired them all. It's being run by an AI and a and a guy at a at a prompt right now.
But there's the all these people in this room, the soundstage is there, and she and I are shooting side by side. And I am just telling the craziest stories, like like, from the book and from my life and etcetera. And she's laughing and laughing and having a great time. Before I realize it, I look up and, like, the CBS News crew, the staff, like, people working at computers, they're not working anymore. They're listening to me, and they're laughing.
And I was like, I am doing this. I end up telling a story about my wife and I having sex in a field in the middle of the night, not realizing that a slow passenger train was about to go by and that we had nowhere to, like, hide. The lights on to the train, people sitting in the windows, us just there, and they're just chugging along. Anyway, I tell all these funny stories and everything, and and I get done. And and she just goes, you're so good at this.
And I was like, thank you. And she goes, we're not gonna use any of that. But that was awesome. And I was like, thank you. And then I left.
And her producer grabbed me, and she's like, seriously, I don't think you told one story we can put into an article or put online. She goes, like, this was fantastic. And I was like, oh, okay. But I made that decision because they they they interviewed a guy before me who was a stay at home dad too. And he was so he was so boring, Elizabeth.
Nothing he said wasn't true. It just I thought to myself, I wouldn't listen to this if I wasn't stuck in this room right now, and I'm not going to make that mistake. So I got up there, and I just, like, lit it up. I went as hard as I could. Anyway, I get an email a couple weeks later from the producer, and she said, well, we did put together a short clip for you.
And I was like, okay. And she goes, and and Katie read your book and liked it, so we're gonna publicize it a little bit. And I was like, thank you. She goes, but the full content of what you did is on everybody's hard drive, and people are watching it at their desks. And I was like, right on.
Thank you. So it's not much longer later. Actually, I was driving to the NPR interview in Philadelphia, and I got a phone call on my big brick phone. Does any remember the gray plastic phones that had the little
I do.
Yeah. Yeah. The Motorola's. I got the call on that, and she's like, hi. I forget her name.
She goes, I produce Katie Couric's television show. And I was like, oh, you're not the person. She goes, no. No. Not the web show, the television show.
And we're doing a panel with with stay at home dads, and we were just in the we were in the pitch meeting for the panel. And Katie looked across the table at me, and she said, why don't we have that Scott Benner guy doing this? And I said to her, yeah. Why don't you? Because I was on my way to NPR.
I was like, it's possible I'm gonna be, like, famous, like, in a couple more days. So, you know, I was like I'm like, I'll do it. You know? So, anyway, I go up to New York City, and it's a panel, and it gets done. And I'm walking off stage just excited that they got me a town car, and I was gonna drive home in a town car like a famous person.
And I'm walking off stage out the back. I'm gonna go out the door or out on the street, and I'm gonna leave. And a hand grabs my shoulder, and I turn around, and it's Katie Kirk. I've never gotten to tell her this, I'm sure I never will. But she said, you are really very good at this.
And I said, what is it I'm good at, Katie Kirk, from the Today show? Like like you know? Because I don't know what she's talking about. And she said, talking to people? You're really good at talking to people.
And she's like, when I didn't talk to you, when I ever when I threw to the other three guys, she's like, there's 600 people in this audience. They were all mad at me. They were mad at me for not talking to you. She's like, you made them laugh on purpose. You made them gasp on purpose.
They were following your every word. She's like, you are really good at talking to people. And I said, thank you. It was twenty thirteen, I think, and I left. I didn't think of another thing about it until people stopped reading, another thing the Internet did.
We suddenly someone found a picture of Leonardo DiCaprio looking fat on a boat. Nobody read anymore. I don't know how to tell you differently, but that is what happened. Like, we switched to pictures, and people were, like, reading? This is bullshit.
And so I started realizing that my clicks were going down. I was doing a couple million clicks a year on my blog, and and I was really starting to figure out diabetes a little bit too. And I was, you know, writing about how to do things or how we were doing things, and and it was helping people. I was getting a lot of good feedback. But I start seeing people are not reading anymore.
And then it puts me into a panic because this thing that I built, now 2013, but almost seven years after I started writing that blog, it's gonna die. Like, I'm gonna get phased out by a platform change or by a by a societal change. And it panicked me. I thought about it for a whole year. And then one day, I just thought Katie Couric said I was good at talking to people.
And I grew up my whole life listening to talk radio. I love listening to Howard Stern. I love Kevin Smith's podcast where he just talks endlessly about god knows what. I like listening to people talk. And she said I was good at talking, and I'll make a podcast about diabetes.
That's what I thought. 2014, I started thinking about it. And I bought a microphone and took the leap. And in 2015, right after Christmas, I tried my big idea out, which was I was gonna take my most popular blog post and read them into the microphone, which as you can imagine so it took me about ten minutes of reading to realize, like, this is this isn't right. It's not gonna work.
I was bored by it. I had the same feeling I had listening to that guy talk about him being a state owned dad. I was like, ugh. If I wasn't doing this, I wouldn't be listening to this. And and I just thought, well, this isn't right.
I'm not gonna I I have to figure this out. But while I was trying to figure it out, this kid named Adam Lasher was on American Idol, and he had type one diabetes. And his his uncle was Carlos Santana, if I'm remembering correctly. And he's on there, and I sent him an email back before the Internet worked the way the Internet works now. I don't know how I found him, but I figured out how to find him, and I emailed him.
And I invited him to be a guest on my type one diabetes podcast, which Elizabeth was not a lie because I had, in fact, put the podcast online. I did technically have I did technically have a type one diabetes podcast. And Adam and I made did an interview together. I don't know if it's any good. I couldn't begin to tell you.
But I like talking to him. And I put it up, and I already had a really good following online. So it kinda, like, spun up and started to take off. And by the end of that year, I had figured out what I was doing. I made an episode called the time I decided to share where I just talked about why I'm doing this.
I got to an episode where I don't even know what it's about. It's episode 11. It's called bold with insulin. And I it's not even about that. It's just I think in the app in the conversation somewhere, I said I found the nerve to be bold with insulin, and then I made that the title.
Anyway, I was making that podcast and chugging along. And a couple years later, I'm still doing it. Once a week, I'm putting up an episode, and it's getting hard. It's a a lot of effort and time. And I was at that point, I think I had one job in diabetes.
I was writing a blog for Omnipod. I think I would write them six yeah. I I owed them six pieces a year. I think they paid me a thousand dollars for each piece. That was the only that was the all the money in the world.
I made I made $6,000 a year. You know?
You were raking it in.
I really was almost I I was thinking about where to invest, talking a lot about the S and P 500 people. And and so they have a changeover, a turnover in the company, and they bring in a new person a new person named Natalie in in in PR. And Natalie puts me on a call like she should with everybody in her group, and she wants to talk about what I'm gonna write for her blog next year. And I said, I don't wanna write for your blog anymore. I just want you to give me the money, and I'm gonna make a podcast with the money.
I'm doing it already, but I need ads. And she's like, what do you mean? I'm like, I can't I said, it takes a lot more time than the writing. Like, I had to tell my wife that it makes money. That was literally what I said.
And so and I kept explaining it, kept explaining it. Nobody was following along. This is a long conversation, me talking, like, really selling. You know? And I eventually said, listen.
I'm gonna help people do better with their diabetes. You'll be the people that brought it to them. And then that voice, like, on a conference call, Natalie's voice, she just said, I understand what he's talking about. Let him do it. And that was it.
She gave me $6,000. I gave them ads. It legitimized the podcast because the podcast had ads on it, which was helpful. And it attracted Dexcom at some point, And I that's how I learned kinda more of the business side of it while I was growing the podcast.
And It's interesting that advertising legitimized the podcast.
Well, why would somebody buy an ad on something nobody was listening to?
Yeah. I guess that makes sense.
Right.
So One of the things
Go ahead.
One of one of the things I wanted to ask you about was the bold with insulin because I find that to be really I mean, just a great phrase and one that was helpful to me, in part because I think that endocrinologists kind of tell you the opposite oftentimes. Right?
Yeah. Well, it's a great example of how the the community builds the podcast. Excuse me. It turns out when you talk nonstop for an hour, it's hard on your voice. Sorry.
I'm sure you'll get to ask a second question at some point. So I I agree with you. So it's not so so people understand, to this day, I don't preplan an episode of the podcast. I do not know what I'm gonna talk about before I start talking about it. Even if I'm doing, like like, aces and paces with Erica, I just say to Erica, like, hey.
I wanna talk about the aces. And I'm like, come ready. And then she comes ready, and I don't know what I'm talking about. And I just start talking. So that episode, episode 11, I don't know what that was about.
That was just me opening up the microphone and talking as far as I'm concerned. I didn't preplan it. I also didn't plan to call it bold with insulin. I wasn't making a a thing. The end of that bold with insulin story is that some years later, I saw people on Instagram talking to each other and saying you just have to be bold with insulin.
And when I saw it, I thought, that's not a coincidence. That's me. She's my lady in England, this lady on Instagram talking about being bold with insulin. I said a thing on a podcast, and two years later, a woman on Instagram is telling another woman on Instagram to be bold with insulin. Mhmm.
That's the kind of stuff that gets me going. That's where I start thinking, give me one. I'll make 10. Give me 10. I'll make a 100.
Like, that kind of thing. And it's you know?
It's a phrase that is really a mind shift. But it's not but
I didn't pluck it out. They did. Like, the listeners plucked it out. That's that's the important thing about the podcast. The the thing you have to understand about the podcast is that I'm not a genius writing down Torah.
Like, it's not the Torah. And and for non Jews, it's not it's not the bible, okay, just in case you don't know the word. Also, I'm not Jewish. I don't know where all my Jewish phrasing comes from, Elizabeth, but nevertheless. And so so I don't it's not like I'm an expert, and I go, hey.
Here it is. A b c d. Do it in this order. You win. I tell stories.
I tell stories about how things work for me. I tell stories about how things occur to me. I say things about, like, pre bolusing, but it's a tug of war. I say things people wouldn't say, and it's all the reason I told you this whole story is because it's how it gets to this. Like, my my insistence to not do things the way everybody else is doing it.
That's an important part of it. Not caring what people think. I left out the part where where I started this podcast. That community came after me. Right?
I got I got I got somebody came to me and said, you're gonna hurt somebody sharing how you take care of your daughter. I don't like the way you make your podcast. And I was like, well, I didn't ask your opinion. And god thank god I didn't listen to that person, who, by the way, to this day still shit talks me twelve years later to people and thinks I don't know. I know.
Okay? In case you hear this, and you will. Okay. So so, anyway, not the point. The point is is that, like, if I listen to the way things were done, none of this is gonna happen.
And so whatever it is that's me or how I occurs to me or whatever, I don't know how to quantify it. What me and the stupid microphone and me talking. Whatever whatever that makes, other people, it's not their job to follow it like the Torah. It's their job to hear the parts that make sense to them and build their own story with it, and then to go out in the world and share it with other people so that we can all continue to build that story together. Until one day, no one's gonna walk into an endocrinologist and not be told to count their fat when they're bolusing.
Like, I'm gonna fix that. Trust me. Okay? Like like, that's that that's the thing. By the way, it's literally my only goal.
My only goal is to get people to, like, bolus for the food they're actually eating, have their settings right, time their insulin well. I have three goals. That's it. If it's not obvious every time I'm talking, I'm doing a bad job. You should have your settings right.
You should be preballsing meals when it's appropriate. You should understand the impact of your food and cover it appropriately. That's it. I mean, you wanna I can add on to it forever. It might be nice to have a little GLP mixed in there for some people.
Like, I there's other things you can do. Like, don't get me wrong. Those three things would save the world, the world that uses insulin. Right? Those three
What I love what I love about what you just said, Scott.
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Today's episode was sponsored by the Kontoor next gen blood glucose meter. It's the meter my daughter uses. She has it on her right now, and you're one click away from having it too. And don't forget using juice box podcast links helps support the show. Friends, my diabetes pro tip series is about cutting through the clutter of diabetes management to give you the straightforward practical insights that truly make a difference.
This series is all about mastering the fundamentals, whether it's the basics of insulin, dosing adjustments, or everyday management strategies that will empower you to take control. I am joined by Jenny Smith, who is a diabetes educator with over thirty five years of personal experience, and we break down the complex concepts into simple actionable tips. The diabetes pro tip series runs between episode one thousand and one thousand twenty five in your podcast player, where you can listen to it at juiceboxpodcast.com by going up in the menu. If this is your first time listening to the juice box podcast and you'd like to hear more, download Apple Podcasts or Spotify, really any audio app at all. Look for the juice box podcast and follow or subscribe.
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