#1831 72 Days Later - Part 2
Kelly opens up about raising two teens diagnosed with Type 1 at age six. She discusses international living , multiple miscarriages , alarm fatigue , and managing different sibling personalities.
Companies that Support Juicebox
Key Takeaways
- The JBP AI Autoimmune Explorer tool revealed Zach's symptoms (back pain, cold intolerance, fatigue, inflammation) potentially link to Hashimoto's thyroiditis - and he's never had his thyroid checked despite his daughter's type 1 diagnosis.
- Don't obsess over Clarity reports daily during the honeymoon period - the data is too noisy to draw meaningful conclusions. Focus instead on understanding settings, timing, and food impacts.
- Perspective matters: Scott at 54 has roughly 1,368 weekends left, while Zach's daughter has decades ahead. There's no need to figure everything out in the first 72 days - time and experience are the only things that make diabetes management make sense.
- The Bernstein low-carb approach works for some, but the Benner philosophy advocates learning to bolus for any food rather than strict restriction. Whole foods are recommended, but rigid dietary rules aren't the only path to success.
- Back pain often has a significant stress component - "Healing Back Pain" by John Sarno explores how psychological stress manifests physically, and reading it helped Scott eliminate his chronic back pain.
Resources Mentioned
- Touched by Type One - Organization supporting people living with type 1 diabetes
- Tandem Mobi with Control IQ Plus - Smallest pump with auto bolus, multiple wear options, and iPhone control
- Eversense 365 - One-year wear CGM with unlimited data sharing
- JBP AI Autoimmune Explorer - Interactive tool to explore 32 autoimmune conditions and their overlapping symptoms
- "Healing Back Pain" by John Sarno - Book about how stress manifests as physical back pain
- Defining Diabetes Series - 70+ short episodes breaking down diabetes terminology with Jenny Smith
Introduction
Scott BennerWelcome back, friends, to another episode of the Juice Box podcast.
ZachAlright. Hi, Scott. Thanks for having me. My name is Zach. Upstate New York is the location. My daughter was diagnosed with type one diabetes exactly seventy two days ago.
Scott BennerThis is part two of a two part episode. Go look at the title. If you don't recognize it, you haven't heard part one yet. It's probably the episode right before this in your podcast player. When I created the defining diabetes series, I pictured a dictionary in my mind to help you understand key terms that shape type one diabetes management. Along with Jenny Smith, who, of course, is an experienced diabetes educator, we break down concepts like basal, time and range, insulin on board, and much more. This series must have 70 short episodes in it. We have to take the jargon out of the jargon so that you can focus on what really matters, living confidently and staying healthy. You can't do these things if you don't know what they mean. Go get your diabetes defined. Juiceboxpodcast.com. Go up in the menu and click on series. 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.
Sponsor Messages
Scott BennerThe episode you're about to listen to was sponsored by Touched by Type One. Go check them out right now on Facebook, Instagram, and, of course, at touchedbytype1.org. Check out that programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes. Touched bytype1.org. Today's episode is also sponsored by the Tandem Mobi system with Control IQ Plus technology. If you are looking for the only system with auto bolus, multiple wear options, and full control from your personal iPhone, you're looking for Tandem's newest pump and algorithm. Use my link to support the podcast, tandemdiabetes.com/juicebox. Check it out. The podcast is also sponsored today by the Eversense three sixty five, the one year wear CGM. That's one insertion a year. That's it. And here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with with the Eversense Now app? No limits. Eversense.
The JBP AI Autoimmune Explorer
Scott BennerAnd then you can hit the suggestion button, and it makes little lists for you. And then you can copy that or email it to yourself to go to the doctor with and say, hey. Listen. I've got these symptoms. It's worth asking, like, is this something? You can also kinda see where they overlap with other issues. It's certainly not a diagnostic tool. I'm not telling you you're gonna it's just kind of like a it's like an educational thing, but more kinda for fun to, like, just kinda click on it and see for fun. I'm the only one who would think this is fun, by the way. But, like, you know, like, where you can see where there's overlaps with different autoimmune issues.
ZachThat sounds like a great tool. I can't wait to check it out.
Scott BennerYeah. Yeah. So something like that you can take a look at. You know, you can type words in. You know, I'm tired, and it'll bring up stuff. But anyway, like, I just find that when people are in that situation, it's hard to know. You know what I mean? Like, who's gonna like, listen. Well, I'll do it with you for a second because you said you have a lot of things. Yeah. Do you have back pain? Yes.
ZachWell, I have, like, three collapsed discs in my back from playing too much golf. Yeah.
Scott BennerI'm gonna call it back pain. Do you have belly pain? No. Brain fog?
ZachI mean, I don't know what that is. I'm less focused than I used to be. I think it's because of the phone.
Scott BennerButterfly rash?
ZachNo. I don't know if
Scott BennerChronic diarrhea?
ZachNo. But I you know, like I said, I'm Ashkenazi. So
Scott BennerCold intolerance?
ZachYou know, that's changed, I think, when I hit I don't know. Let's call it 38. I'm much more cold in the house.
Scott BennerOkay. Do you have depression?
ZachNo. Others in my family do, but I do not.
Scott BennerDry eyes? Nope. Let's see. Do your eyes stick out? Nope. Fatigue?
ZachYeah. I mean, again, I'm getting older. I'm not way fish.
Scott BennerNope. Fever? Fever. Yes. It's not way fish. It's acts like I've put on a couple. Do you have a goiter? No. No? Has your hair started to gray?
ZachI mean, I'm 41, Scott. What do you want from me?
Scott BennerHair graying? You have hair loss?
ZachYou know, maybe the forehead's starting to kinda play a more prominent role in my life, but it's not significant.
Scott BennerHeat intolerance?
ZachIt's not the same thing as
Scott BennerNo. No. You get you get overheated easily.
ZachOh, sorry. The opposite.
Scott BennerYeah. No? Inflammation. Do you think you have inflammation?
ZachWell, I mean, to the extent that I have arthritis in my elbows or my hands or my ankles. Yes.
Scott BennerHow about itchy? Are you ever itchy?
ZachI have dry skin. I live in Upstate New York.
Scott BennerUh-huh. Just feeling Jaw pain, joint pain, or joint stiffness?
ZachNo. But this is clearly the end of a pharmaceutical commercial.
Scott BennerIt was done everything. You have low blood pressure? No. Malabsorption? Of what?
Scott BennerYou think your body is not absorbing your nutrients correctly?
ZachOh, I can't seem to raise my HDL, Scott. I have a like, familial hypercholesterolemia.
Scott BennerOh, wow. Any numbness? Nope. Okay. Patchy hair loss? No. Photosensitivity?
ZachWhat does that mean? Like, have a seizure in the movies?
Scott BennerNo. Like, does light bothers your eyes, gives you headaches, stuff like that? No. No? Do your fingers ever get cold at the end and can't warm up, turn blue? No. No? Any sexual dysfunction you're willing to share? No. No? Shaky skin issues? You said yes. Here's one. Smooth tongue. Spine stiffness. Tachycardia. I
Zachdon't mean to laugh for those with smith tongues. I just never never heard that.
Scott BennerTremors, vision loss, weakness, weight gain, weight loss, anything.
ZachMy father is 75, but he has essential tremor.
Scott BennerThat's your father. Weight gain, weight loss?
ZachNo. I'm just always been slightly heavier than my doctor would like me to be.
Possible Hashimoto's Connection
Scott BennerOkay. So you have so four of the things that we mentioned for you might link back to Hashimoto's. So have you ever had your thyroid checked?
ZachNever. No. And so that's where we are, Skyler. Like, the whole family's gotta be checked. My younger daughter's gotta be checked, and we'll see where where it all shakes out. Mhmm. You know, some of the don't even bring this stuff up.
Scott BennerNo. They're never going to.
ZachColumbia certainly has. They wanna test you for this and that. I mean, certainly for type one. It's interesting how the practices seem to vary.
Scott BennerYeah. No. I mean, it's just anyway, like, I bring it up because I don't know if these things are gonna help anybody, but I just think it might be valuable for people to just kinda click around a little bit and see because, I mean, I made it because of how many people, you know, come on here all the time and talk about this kind of stuff happening in their life, and then you ask them if, you know, have they checked themselves? And they're just like, no. No. I don't have time for that or something like that. There's one woman I was talking to recently. I mean, she quite clearly has Hashimoto's. And she's like, well, the next time I'm at the doctor I'm like, no. Not the next time you're at the doctor. I was like, get off with me and call the doctor. I was like, I'm like, what do mean the next time you go to the doctor? Right. You know?
ZachGotta be vigilant. Right?
Scott BennerYeah, man. You gotta help yourself a little bit. Also, if your kid has an autoimmune issue, it's possible that you do too. Like, so are there any in your family line or your wife's family line that you're aware of?
ZachI know. That was that's always your first question, Scott. I'm surprised I didn't get it yet.
Scott BennerWell, seventy two days. I don't know what you know. No.
ZachI mean, we're not aware of any of that. This was totally out of left field.
Scott BennerNo celiac in the family?
ZachNo. Which is common among Ashkenazi Jews, but no.
Scott BennerThat's why I asked because you brought that up. Yeah. Yeah. Yep. And so wait. You're not related to one person who has hypothyroidism?
ZachThat I'm aware of, Scott.
Scott BennerYeah. And not that you're aware of. Yeah. You don't have, like, a sleepy aunt or anything like that?
ZachNope. My aunts are wonderful.
Scott BennerOkay. Your aunts are they could be wonderful and sleepy, couldn't they?
ZachThat's true.
Scott BennerCan you imagine if you were sleepy that makes you not wonderful? That'd be crazy. Zach, you're out of your mind.
ZachSleepy people are quite wonderful.
Caregiver Burden Discussion
Scott BennerYeah. Of course. Zach, in your note, you say caregiver burden, asking, like, how did I get through the first sixteen years of Arden? Yeah. Go ahead and ask your questions. I'll do my best for you.
ZachWell, I mean, the thing I always think of with you is sort of like you were able to dive in fully and get people to come to you to have these conversations. Certainly not learning anything from me, I didn't already know, but others, what I wouldn't give to be able to just work all day on my daughter's, you know, condition. But I I guess I'm maybe I'm far enough down a career path. I should probably try to stay focused on that, but it's hard. It's hard to have a child who has type one diabetes and still be a primary, you know, breadwinner for your family. So I gotta get back to that. Not meeting right now, but just in general. I have to regain my focus for my family's livelihood, while also continuing to do as good as we possibly can for Hannah.
Scott BennerHas your life been knocked off course the last couple of months?
ZachOh, I mean, Scott, in the first week, I just you know, you grieve. Right? Yeah. And then you you try to kinda rally from there. It does feel like a constant report card. You know, you're always looking at the clarity reports and trying to do better, and then type one's always throwing you a curveball. But I think as much as any family, we're we're slowly trying to incorporate it into our life and continue our pursuit of bliss and not let it stop us from, you know, giving our kids a wonderful life. But it's that first week was you know, you just realize how big it is and how early it is in her life and how long we're gonna deal with it. You know? And you hear people talk about how hard puberty is and then how hard sort of emotional high school period is and how hard it is when they go to college, and that's all ahead of us. But, you know, hopefully, by then, we'll be more comfortable in some ways with the
Scott BennerYeah. Probably not. I mean, no. No. Of course, you will. I was joking. But six months from now, you'll look back, you won't recognize this person. A year or two from now, you'll listen back to this and think, oh my god. I was out of my mind.
ZachI can't wait. Yeah.
Don't Obsess Over the Data
Scott BennerYou know what I mean? Like and at the same time, everything you said is completely reasonable. It does throw your life into upheaval. Are paying way closer attention to something you didn't know anything about seventy three days ago. And, you know, you're working through trying to absorb information, apply it, is it working? I would tell you I'm gonna say kind of something backwards, but I think I wouldn't look at the clarity report every day. Yeah. I think maybe I would focus on settings, timing, understanding the impacts of the food. Yeah. Just try to get that together first. Also, she's actually having a honeymoon, to understand what's happening, there'll be takeaways from it long term, but, like, day to day I don't know how I mean this. Like, if you're wanting to drive a car in a straight line on a drag strip, and one day, the light turns green, you stomp on it, and you go. You're like, oh, it took us nine point five seconds to go a quarter of a mile. And then the next day, Godzilla steps on the track while you're doing it. You can't take the data from the Godzilla day and learn anything from it, really.
ZachRight.
Scott BennerYeah. You know? So if you've got something just going crazy on you out of nowhere, I mean, that's just gonna cause more confusion than value, most likely.
ZachAn illness.
Scott BennerYeah. Yeah. Yeah. And you guys have been sick recently and all that other stuff. Right? So, like, once the honeymoon's over, then the takeaways should start piling up in a more meaningful way. I think that the value here if I could say one thing to you that I think would be incredibly valuable, is that she's three, and she's probably gonna live into her eighties. And you're 40, and you're probably gonna live into your eighties. So you've basically got, like, you know, the next twenty years to get her ready to graduate from college, and you'll still be around after that if she has any more questions. You're not gonna get this whole thing figured out in the next seventy two days. And that's difficult if because I've been where you've been, and I have felt what you're feeling. Yeah. And there is a mad rush to get it all figured out. And the truth is is that the only thing that's gonna make this make sense for you is time and experience. Yeah. That's it. You just gotta live with it every day, man, and not let it knock you down and take some takeaways. Look for repetitive stuff so that you can say that I know what's gonna happen is gonna happen. Like, I've seen this happen so many times. I know this is gonna happen next. Mhmm. Because you might hand me your daughter right now, and I might be able to keep her from having so many lows during the day in the exact same setup that she has right now. But the good news is that you'll be able to do that at some point as well.
ZachLook forward to that. Yeah. Appreciate the advice.
Scott BennerDoes that make sense?
ZachIt does. I mean, unfortunately, you undershot on the life expectancy for her. I had four grandparents. Right?
Scott BennerGo ahead.
How Many Weekends Do We Have Left?
ZachOne of them was a chain smoker. Well, chain smoker. She smoked. She lived into her mid eighties. The rest of them were all 95. So you should have said a 100, Scott, if you wanted to make me feel good.
Scott BennerI just heard this thing the other day that really bummed me out. But now I don't remember the number, so I'm just gonna like, I'm gonna plop it back in here because I've got this window open still. But I was listening to somebody tell me at my age how many more weekends I have left.
ZachOh, yeah. I've seen these charts.
Scott BennerAnd it wasn't a big number, Zach. I gotta tell you. Yeah. And Yeah. And then I saw it on a Sunday afternoon. So the actuarial breakdown for me is I'm a man at 54. My statistical life expectancy is that I roughly have twenty six more years left.
ZachNah. You'll do better than that, Scott. You got the GLP ones now.
Scott BennerWell, I'll tell it I got a GLP in a second, see what it says. But my son's 26. Yeah. That entire time felt like it went by in a split second. Yeah. And I was younger when it happened. So what you're telling me is I'm gonna blink six more times and drop dead. Is that what this is gonna be? You know what I mean? Anyway Scott,
Zachit's even worse because your baseball is not gonna be as good as your son's for those twenty six years.
Scott BennerNo. Exactly. So how many more weekends do I have left? 1,544.
ZachGotta make them count, Scott.
Scott BennerHow am I gonna do that? I gotta go grocery shopping.
ZachArden's not home anymore, is she? What are you what are you so worried about the grocery store?
Scott BennerShe came back, and she's going to school from here right now. She's got another not quite a year of school left that she'll be going to grad school. So Nice.
ZachCongrats to her.
Scott BennerYeah. By the way, that's very nice. Gemini is trying to be kind to me. It says seeing a finite number between thirteen hundred and fifteen hundred, which I who said 1,300? Like, wait. Then I realized that number's for a woman my age. A man my age, it's thirteen sixty eight.
ZachYeah.
Scott BennerIt says I could see it could be a bit jarring. Right. Thank you, Gemini. It was a bit jarring.
ZachYeah. The AI is trying to be a therapist. Right?
Scott BennerNo. But but but seriously, like, that, you should reverse engineer what I just said. You have so much time, you know, just around the diabetes piece that the person you are today trying to understand what a 14 year old's life is gonna look like with diabetes and an 18 year old's life and somebody in college and what happens when she goes to get married. Like Yeah. It's really another version of, like you know, I tell my wife all the time that worry is a waste of imagination. She does not listen. But, to like, right now, you are worried about things. With such incomplete data, you have no idea what it is you should be worried about or not worried about. Right. It would be a shame if you spent this time with your young family, bringing your hands over something that never came true. That you never even needed to think about it for. So I tell you, man, it's timing amount. Understand the impact of your food. Don't stare at a high blood sugar. It's pretty much it. You know what I mean? And then you do that at the different parts of your life and things work out. And a six nine a one c, seventy two days after diagnosis with a three year old is absolutely brilliant.
ZachThank you, Scott. Yeah. I appreciate it.
Scott BennerYeah. You're doing well.
ZachAnd you deserve some credit for that. You know?
Scott BennerI deserve all the credit for it, Zach, but I don't like to bring it up. It makes me sound you know what I mean? I listen. I gotta tell you something. There's a family friend who I've helped with some stuff. Right? And their situation is so much better now. They were on the phone last night explaining it to my wife, and my wife hangs up the phone, and she looks at me and I went, I did that. I fixed that whole thing for them.
ZachAnd my wife Well, I don't mind you saying it. You don't have to be modest here. You're doing big things in this space. Thank you, Zach.
Scott BennerI was like, that was me. I fixed all that for them. And then and my wife makes that face at me, and I laugh because I'm joking, but I'm not. And I said, this is why it's important for me to have a podcast. I can't be limited to just helping one person at a time.
ZachI mean, I can't believe I'm speaking to you, Scott. I mean, I emailed you the second day in the hospital. I'm not expecting a response, here I am. So it's pretty cool.
Scott BennerNo, man. I like I don't get your perspective that often. The just a few days into it perspective. Yeah. So I like to have that sometimes. I don't want too much of it because then the podcast is just a bunch of people going, I don't know what's happening. I'm like, yeah.
ZachI'm spinning out of control.
Mid-Episode Sponsor Break
Scott BennerYeah. Yeah. Yeah. Episode is sponsored by Tandem Diabetes Care. And today, I'm gonna tell you about Tandem's newest pumping algorithm. The Tandem Mobi system with Control IQ plus technology features auto bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandemdiabetes.com/juicebox. This is going to help you to get started with Tandem's smallest pump yet that's powered by its best algorithm ever. Control IQ plus technology helps to keep blood sugars in range by predicting glucose levels thirty minutes ahead, and it adjusts insulin accordingly. You can wear the Tandem Mobi in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately, clip it discreetly to your clothing, or slip it into your pocket. Head now to my link, tandemdiabetes.com/juicebox, to check out your benefits and get started today.
Scott BennerWhen you think of a CGM and all the good that it brings in your life, is the first thing you think about, I love that I have to change it all the time? I love the warm up period every time I have to change it? I love that when I bump into a door frame, sometimes it gets ripped off. I love that the adhesive kinda gets mushy sometimes when I sweat and falls off. No. These are not the things that you love about a CGM. Today's episode of the Juice Box podcast is sponsored by the Eversense three sixty five, the only CGM that you only have to put on once a year, and the only CGM that won't give you any of those problems. The Eversense three sixty five is the only one year CGM designed to minimize device frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping. You can manage your diabetes instead of your CGM with the Eversense three sixty five. Learn more and get started today at eversensecgm.com/juicebox. One year, one CGM.
Predictors of Success
Scott BennerScott, I'm thinking of leaving my family and going to I
Zachdidn't say that. You did.
Scott BennerThen I'm going to the Everglades. I'm gonna hunt snakes until one of them gets me. I'm done. I'm out. You imagine.
ZachI might discover the cure for type one in the venom.
Scott BennerIn that park, you might. There's something going on in there. But, no, seriously, like, you're gonna be fine. Like, I'll tell you right now, predictors of success for me, one of them is a level of interest in this whole thing. You have that. You know what I mean? Like, I think just being interested and paying attention is a predictor of success in type one diabetes, probably in everything. But people who have your level of interest usually end up doing pretty well.
ZachThe funny part is, Scott, I spoke to a mom early on and she said, you know, my husband's really analytical, and I'm kind of a little more of a feel in terms of the ball of saying. And, you know, we're kind of ying and yang it, and we're doing a great job. And I was like, okay. Whatever. Now here I am seventy two days later, you know, spinning out of control, reading everything. You know, my wife is just kinda winging it, and who's a better baller, sir? That would be my wife Michelle.
Scott BennerIt's her. Yeah. She feels the art. Right?
ZachYeah.
Scott BennerThere's a little bit of an art to it. Yep. You know what they say? Like, let go. What if you hold on too tightly, it slips away? What is that about there's something about holding on to something? I don't really Something. I didn't go to college.
ZachSomething. Yeah.
Scott BennerYeah, Zach. I don't know. Just don't hold on too tight. It's gonna be okay. You got fast acting sugar in the house and some glucagon. I think you'll be alright.
ZachBlow gummies. Can't, recommend him enough.
Pump Changes with a Toddler
Scott BennerHow is she with the pokes and the devices and stuff like that?
ZachWhat's a word that's worse than terrible?
Scott BennerDoes she scream while it's happening?
ZachShe's two and a half, Scott. You know, the funny thing is, like, now she's at the point where, you know, we got the good tip early on of, like, you know, get all these stickers and stuff and get them excited about designing it. Right? So we did all that. And now she gets excited, and she's like, I wanna change my robot. We call it robots. Right? But then when you actually start, you know, you spray the adhesive remover and you're getting rid then the screaming begins.
Scott BennerShe starts going, wait a minute. Yeah. This sticker thing is not gonna help me with the next part. Right. I love the idea that a three year old can be like, wait a second. Probably forgot about this part. No. I mean, listen. I don't know what to tell you about it all. It sucks. And, you know, people are like, well, how am I gonna stop it from having a detrimental effect on my kid later? I'm like, I don't know that you can, but, you know, there's a much more detrimental effect not taking your insulin.
ZachThere you go.
Scott BennerI think a big part of the first couple years is regulating yourself and your expectations for life. Because there's no doubt that, again, like, three months ago, you were like, oh, I have a young family. You know, I've got this little girl. I've got another baby that just got here. This is all great. We're doing terrific. I mean, I could paint you a picture right now, Arden's second birthday, the backyard of our house. We hired a guy to bring a pony. Mhmm. He put the kids on ponies and was, like, walking them in circles, ruining the grass. Didn't even care. Couldn't have possibly cared less walking the ponies in a circle. Just a beautiful experience. Like, I had a son who was maybe god. What was that? 2004. He was only about four years old. Like, 2006. He was six. She was two. There's a pony in my yard. Like, you know what I mean? I think we had the zoo bring animals. I think there was, a snake and a an eagle. I'm not even making that up.
Scott BennerWow. Yeah. It was like a petting zoo back there.
ZachYou're making me feel bad. I got a third birthday party to plan here.
Scott BennerWe just bought the house. We had a yard finally. Like, we were doing this whole this summertime Arden. We even made Arden on purpose so she'd be born in the summer so we could have a summertime birthday party. And, like, I'm not even kidding you.
ZachLike, as a planners.
Scott BennerWe've only planned two things in our life. One of them was getting pregnant in October so that Arden could have a birthday party in our backyard. And then we get the whole thing, and there it is. And I have to tell you, like, I stood back for a second that day, and I thought, oh, man. I did it. Right. I grew up so broken, like, in a family that didn't have any of this. I was like, I put the whole thing together in my mid twenties. Like, I really I did it. You know? Yeah. And, like, a couple weeks later, we're sitting in that hospital. Amazing. Yeah. Yeah. Yeah. And then I don't know. It takes as much time as it takes for you to regulate yourself and understand that, like, nothing in life is promised and that, you know, it was never gonna go exactly the way you thought. It just these things seem really big. Yeah. But the sooner you realize that, like, these are the cards and you still play. And you don't play differently, you gotta play the same way that you were going to before this happened. And that's when it all melts away, and it doesn't seem like that big of a deal.
ZachI think we're getting closer.
Scott BennerYeah. Well, hell, you got plenty of time. You just started. So you're still on your first set of tires in this race. You know what I mean?
ZachThat's right.
Bernstein versus Benner
Scott BennerYeah. Yeah. Yeah. There's a note in here for you about like, you just said, at the end, you wrote Bernstein versus Benner. What did you mean by that when you wrote that down?
ZachWell, you brought it up before in a way. You were talking about why are you talking about low carb. And I think that that there's the happy medium. Right? So when you think about your chicken nugget, which I I forget if this was in bold beginnings or what, where you talked about the chicken nuggets. It's a perfect example because that's where I'm at in diet, in life with a young kid. Right? The dinosaur chicken nuggets. Right? Is that, you know, I think the the reasonable middle ground is probably where we land, which is that you try to offer some low carb options or maybe in between meals do that. But part of that is just I think you don't wanna keep feed the kids all white flour and sugar, which a lot of, you know, young kids end up eating. They eat a lot of goldfish. They eat Annie's gummies or whatever. So Bernstein, I'm sure most of your audience will know, was a guy who basically I don't wanna oversimplify it. I haven't read the book. But he he was diagnosed midlife, then became a doctor, then wrote a book. He lived into his nineties, and he advocated for his book was called the diabetes solution. And what was the solution? It was don't eat carbs. I mean, basically.
Scott BennerIt worked really well for him. Yeah. We're As I can tell.
ZachYou know? But I think your podcast is a little bit more about balance. Right? I don't think you come out and advocate for low carb. You advocate for learning how to bolus. That's why I described it that way, I think. Yeah. I don't I don't wanna put words in your mouth or his.
Scott BennerNo. I mean, listen. I've never read the man's book either, but, like, he lived a hell of a long time. Mhmm. You know, the last handful of years, he was in his eighties, if I'm not mistaken.
ZachRight. 90. I think he got to 90.
Scott Benner90. That's amazing. Like, you know, and for having diabetes for as long as he did. Right. You know, and starting when he started
ZachWithout technology. Right.
Scott BennerYeah. His longevity is astounding. And it's hard to argue. Right? Like, the fewer carbs you take in, the less insulin you're gonna need, the less insulin you use, the less chance you're gonna have at, like, Lowe's. You know, the carbs aren't gonna make high blood sugar. I I think all that makes a thousand percent sense.
ZachFor sure. But it can increase burden too, right, of just being in the world.
Scott BennerYeah. Maybe. Like, I don't know. Like, I don't think it's important to assign, like, what I think about it. What I think is that there are a lot of people out in the world, they have a lot of personalities and a lot of experiences and a lot of access to money or not access to it and health care and other so many differences in people's lives. I thought it would be stupid for me to jump on this podcast and pick a thing and say, do this just like this. Yeah. Because I just don't think you reach that many people that way. And so I thought I had the biggest possibility of reaching the most people by saying, look, I think if you understand how the insulin works and you understand how food impacts you, that you can make decisions that will meaningfully keep your blood sugar more stable. Then then you go ahead and apply that idea to the way you live because I'm not in charge of how you live and I certainly can't change your mind about what you eat. Like, do I think you should be eating a ton of white flour and being at fast food restaurants? And I don't think you should do that at all. But I also think if I said that to you, you'd be like, oh, well, sure. It's easy for you to say, asshole, because you've got your own set of circumstances. I'm trying to pass on to people what I've learned in a way that will be valuable for them, not in a way that is either, like, celebratory because they do it that way or punitive because they don't. I'm just gonna tell you, like, this is what works for me, and I think it could work for you too. Give it a shot if you want to, if you don't want to. I don't wanna say I couldn't care less, but I couldn't care less. Like, do whatever you wanna do. Yeah. You know what I mean? But I think that if you come out and say, eat like this. This is the right way. You'll capture the people who agree with you.
ZachRight.
Scott BennerAnd that's it. But you're not gonna talk anyone else into it. Like, nobody who isn't gonna eat low carb is gonna hear that story. If doctor Bernstein rose from the grave right now and retold his story, people who aren't gonna eat low carb wouldn't go, oh, okay. I'll do it. They'll just go, well, that's nice. I'm glad it worked for you, and I'm not up for it.
ZachWell, the difference is we're making decisions for somebody else right now.
Scott BennerRight? Yeah.
ZachJust just two and a half.
Scott BennerRight. Yeah. I mean, you are a new father. Like, you're in the middle of deciding how you're gonna talk to your kids about food and what you're gonna bring into the house and what's gonna be available and what's not going to be. You hear Jenny talk about it sometimes. Like, her kids don't get food like that. They don't even know it exists, and they don't care. They're fine, but it works for them. She could just as easily have put that into place for kids who were like, hey, lady. I want a Zag Nut bar right now, and I'm gonna scream until I get one. Like, I don't know. She doesn't know either. Like, is it nature? Is it nurture? I'm assuming it's a little of both. You know, how she got to there, how she's wired, how her brain works around it. Like, it's not as easy as just saying I'm gonna do this thing now. Because if that was the case, then I would get on my rowing machine every day and not just when I force myself to do it. Yeah. You know, like, I'm just not wired like that. Mhmm. Could I fix that? I probably could change that for myself, but I don't know how to do that. Or if I want to, to be perfectly honest, like, I don't know, man.
Scott BennerKnow, You I saw a post popped up in front of me recently. I would definitely never say anybody's name. But it's somebody who eats incredibly low carb and has really nice success with it. And, you know, it's it's celebratory post as it absolutely should be. And there's about, I don't know, 700 likes on it. And it would be easy to look at that and say, oh my god. Look. 700 people agree with that. That's all the people. But it's not. My group is full of people who eat the way they eat and, you know, there are people who support them doing that. And I just don't understand, I guess, the desire to make somebody feel badly if they don't do what you do. And I'm not even saying anybody does that. Like, I'm just saying, like, you're gonna figure your way through this, Zach, and it's not up to me how you get through it. I don't even know that it's up to you how you get through it. Like, sometimes I just think it's life and things you run into, things that make sense to you or don't, amount of effort you have available at the end of the day to, you know, make a chicken nugget yourself versus open up the frozen bag of whatever the hell those dinosaurs are. Pretty sure they're not chicken. But, you know and I'm, you know I don't know. Like, I don't want you to feel bad about it. I want you to do as well as you can do. Yeah. And be happy and etcetera. Like, I don't know. Like, I might lose a 100 of those weekends because around Easter, I really do like eating a couple of stale Peeps. You know? Like, I don't know. But, like, you know, when I'm 84 and I can't see my hand in front of my face, I might think, oh, I should've eaten more of those Peeps. I could've got out of here sooner. So, like, I don't I don't know how life's gonna go, man. Nobody does. You know? So doctor Bernstein found something that worked great for him, and it works great for the people he found that agree with him and who jive with that idea. I think that's awesome. I really do. Like, whatever works for you is what I think is awesome. Yeah. Right. No. That was a lot of talking. I'm sorry.
ZachThat's okay. Yeah. I mean, one thing it makes me think is, like, there's this question of people say the less insulin you use, the less chance you have a bad outcomes. Another way of saying the healthier you eat, the healthier you'll be. Right? Because, essentially, if, you know, you're using less insulin, you're probably eating it healthier.
Scott BennerMhmm.
ZachNow there may be some high fat, you know, Atkinsey things that people have to say about the cardiovascular system. But is it the insulin, or is it just like a bad diet? It's a bad diet. I'm still trying to figure that out too. Don't know what the reality is there. But you're right. I mean, at the end of the day, there's trade offs on, like, mental health and disease burden and all of that. So I definitely hear what you're saying.
Whole Foods Philosophy
Scott BennerYeah. And if you want the opinion of somebody that barely got through high school, didn't go through college, and has absolutely no training, I think that you should eat whole foods as much as you can.
ZachRight. Yeah. The the whole state of the outside of the grocery store.
Scott BennerYeah. That makes sense to me. Right? Like, I've said it a number of ways in the podcast. Like, when I was struggling with my health and my weight and all that stuff, I didn't know what I was doing. I say this all the time. Happy to tell you again. Grew up like a trash person. You know, like, nobody made good food for me. Nobody even understood what good food was. And as an adult, when I was like, oh, I have these kids, and I don't want them to be in my situation.
ZachMhmm.
Scott BennerI don't know what to do. So I would just follow people around the grocery store that look healthy. I'd be like, what are they buying? It doesn't take long for you to follow them around to realize they don't go up the potato chip aisle.
ZachRight.
Scott BennerLike, that's just pretty simple. All those healthy looking people that I saw in the grocery store, I look in their cart, there's no potato chips in their cart. Yeah. I don't see soda in their cart. They make decisions like that, or maybe they're not even decisions. Maybe it's just how they were brought up or whatever. And I say to myself, okay. Well, I'll try to avoid that stuff for my kids. And I'll tell you right now, my son all the time sits down with a glass of water, and I'm so proud every time I see him do it because I wouldn't drink water if you paid me. I hate it. Yeah. I don't even know why. Like, it it tastes like water. I think that's the worst part. But at the same time, I'm fine with it. It's just when I sit down, like, in a relaxing situation, it would not occur to me to do it, but my kids do it all the time. You know? They eat beans and chicken and the stuff that I basically told them to eat when they were little. I was in charge of telling them that. Just the way I grew up eating hamburger helper and all that garbage my mom and dad gave me. But my parents were broke, and it's probably the best they could do, but it still informed how I ate. And so, you know, I had more luck guiding my children than I did changing for myself, to be perfectly honest. You know? Because I just it felt that important at the time. There's still places it slips through the cracks. Like, my wife definitely has, like, a make sure there's snacks around the house so everybody feels loved mentality.
ZachMhmm.
Scott BennerAnd that's psychological. That's got nothing to do with food. You know what I mean? So, like, I don't know, man. Like, you got little kids. Like, you the world's your oyster right now. You'd probably get them to do whatever you want.
ZachYou're making it sound too easy.
Scott BennerThat kid's gonna go to college and eat pizza for goddamn sure. I don't care what you feed her.
ZachOh my god. Some of those episodes where you talked about the food is of restaurant quality. As Art is discovering the cafeteria. That was insightful for me, just the way you described that.
Scott BennerYeah. College food is trash.
ZachWell, just the idea that you don't know what's going in at the restaurant, and a bowl of this or a bowl of that is not the same in your house or at the restaurant. Yeah. And that's a general philosophy that you can it helps you learn about what goes into a dish and what that means, and slowly you learn why the goldfish are so hard to bolus for.
Scott BennerMhmm.
ZachI mean, you learn something about health in general, I think, through diabetes.
Scott BennerYou leave the chilies after having a chicken finger and a fry, and you're like, I gotta go to the bathroom. I got it right now. Out of the way. Is it the grease in the fryer? Is it the grated chicken? Is it what's in the breading? Is it like I don't know. No idea. I don't mean to pick on chilies either. I hear it's a celebration of food. But, like, you know, like, that kind of stuff. Like, there's so much fat and sugar and salt and everything so that, like, the food doesn't even have to be good. Like, those jojas it up so much for you. You'll leave there. You're like, this was awesome.
Scott BennerMhmm. I see people do that all the time. There's a chain restaurant that sells steaks.
ZachTexas Roadhouse?
Scott BennerThat's the one. You couldn't drag me in there if you chained me to a car and pulled me in there.
ZachIt's the most successful restaurant in America. Right?
Scott BennerI swear to you, I've had a meal there maybe twice in my life, and each time I've left, I felt like I got a a telegram from my body. It's gone beep beep beep beep beep beep. What it's saying is, like, please don't ever do that again.
ZachA lot of butter.
Scott BennerYeah. Yeah. Maybe that's just it. Like, a lot of fat or whatever. Like, it's possible you don't even know if it's a good steak. It's just so drenched in whatever that it hits all your pleasure centers, and you go for right on. This was awesome. So I don't know, man. Like, good luck to you. You're gonna have more kids. May I suggest not?
ZachI don't I think we're done. I mean, look.
Scott BennerYou're not on a roll, if you know what I mean. Like
ZachI might fall over if we have another one. It's a lot of work, man.
Back Pain and Stress
Scott BennerMy last question for you is your back. What's wrong with your back?
ZachI worked at a driving range in high school, and I have a pretty high swing speed. And if you know anything about most driving ranges, they have a sort of a little rubber mat with, like, fake grass on it, and then underneath that's concrete pad.
Scott BennerMhmm.
ZachSo imagine, you know, you're working the cash register, but when it's not that busy, you're hitting, like, 300 golf balls a day as your spine is developing from a adolescent into an adult, you know, from the ages of 14 to 18. While the impact of a shaft going a 100 miles an hour plus into a thin rubber mat and concrete is intense, I guess, I'll say. I think that's probably what caused my disc to herniate at quite a young age. And, you know, what happens when you herniate a disc is the sort of gelatinous substance inside of it squeezes out, presses on your nerve, causes all kind of leg pain and numbness. And then over time, that gelatinous stuff just kind of dries up and goes away, and your vertebrae are essentially sitting on top of each other. That's called degenerative disc disease.
Scott BennerMhmm.
ZachSo I have, like, three levels that are basically collapsed like that at this point, but I still play golf.
Scott BennerHas it been worse over the last few months?
ZachYeah. It kinda ratcheted up a little bit, you know, but at wintertime plus diabetes stress didn't help. Carrying around a baby, carrying around a bowling ball. You know?
Scott BennerI don't say a lot of hippie stuff on the podcast. Yeah. But here you go. Okay. Healing Back Pain by John Sarno. It's a book? Yeah. Just read it. Okay. I haven't heard of that one. It fundamentally changed my life. Not kidding. Yeah. But it's more about, like, stress and how it manifests in your back sometimes.
ZachIs the stress coming through the microphone, Scott?
Scott BennerNo. I know you, Zach. Don't worry. I've been you and I know you and I know where we're going here. I'm gonna tell you, like, when I read that book and it made sense to me, I really did alleviate a lot of my back pain. And I think it was little stats in there, like, prior to I'm gonna get all this wrong, but, like, prior to World War two, the instance of men complaining about back pain was, like, nonexistent. Like, so when we were all out there busy, you know, fighting Jerry or whatever was going on
ZachFor our lives, guys.
Scott BennerYeah. Yeah. Yeah. Nobody was worried if their back hurt. And then you brought them home and gave them a quarter of an acre and some grass and free time, and people were suddenly more aware of themselves and their stress build up. And another way he says it is that if you went to work and had a horrible day at work and came home with a headache, you wouldn't come home and tell people your brain is broken. But if you go to work or say your kid's diagnosed with type one diabetes and your back starts hurting, you tell people right now, I've slipped this. I have a bad back. And he said if you I forget what the number is. If you take, like, a thousand adults who've never complained of back pain and give them an MRI, a surprising number of them have the disc stuff that you were talking about. Yeah. It was just I don't know. Those things made sense to me in the time. I mean, I can save you the $20 if you want, although I think it's worth reading.
ZachHow many ohms do I have to say to get rid of this?
Scott BennerWell, what I used to say quietly in my own mind was my back's not broken. I'm okay. Alright. Yeah. And then it just kinda got better. Then the rest of it was losing weight. I lost weight and that's it. My back I feel badly saying this because the listeners about five years ago bought me the chair I'm sitting in because my back hurts so badly. Oh, wow. I complained about it on the podcast one time, and I decided, like, I'll spend more money on a chair. And I didn't know what to do, and they were expensive. So I went online. I was like, hey, guys. Can you tell me the difference between these chairs? Does anybody use these? And before I knew it, I woke up the next day, there was, like, $2,500 people had sent me to buy a chair with, like, in total.
ZachOh my god.
Scott BennerAnd so I sit in a really great steel case chair. It's awesome, by the way. But to all those people who did that, my back doesn't hurt anymore. It's not because of the chair, so I'm so sorry. But I do appreciate the chair still. It's the only thing I've ever taken from people is my chair, and I just losing the weight made my back not hurt anymore.
GLP-1 Medications
ZachYeah. Yeah. I actually it's funny. Leading up to the diabetes the year before, had been on GLP ones, which didn't work well for me, but I won't go into that tangent. And my wife, because of the rounds of IVF to conceive our daughters, had been, you know, for the first time, injecting herself with various things.
Scott BennerYeah.
ZachThat's just part of what that process is. So the one thing we did have coming into diabetes is experience with needles. Mhmm. Mhmm. So it was
Scott BennerWait. Listen. You're already in the ninety minute range. So why didn't GLP work for you?
ZachHere's what I found. Because I had less appetite, I eventually would get hungry at, like, 03:00.
Scott BennerMhmm.
ZachAnd then I would just eat whatever crap was around the house. And my wife was pregnant, so there was a lot of crap around the house.
Scott BennerIf you would have just eaten chicken in that moment, Zach, you would have lost weight.
ZachYeah. It's like trying to get my daughter to eat chicken right now.
Scott BennerWhat dose were you up to?
ZachTwo and a half. Like a child
Scott Bennerof what? Ozempic?
ZachGeneric semaglutide. I was going through that company, Roe, so it's probably coming from god knows where. You know what happened with all that. Right? So during COVID, there was a shortage of supply due to supply chain issues. Yeah. And so they changed the law, and all these companies just started making generic semaglutide, which is Ozempic. Yeah.
Scott BennerYeah. Yeah.
ZachAnd so and it was way less expensive.
Scott BennerDo you have weight to lose still?
ZachYeah. You know, it's funny. So I'm, like, six two. Mhmm. If I stepped on a scale right now, I'd probably say, like, two fifty five or something. If you looked at me because I'm taller, I don't think most people would say, like, I was obviously obese, but I'm overweight for sure.
Scott BennerYeah. Zach, I'm gonna tell you right now, a little zepbound
ZachI've heard it's better.
Scott Benner40 pounds off you in the next year. Bet your back doesn't hurt as much anymore. Yeah. Maybe. Yeah.
Scott BennerOh, man. Reminds me today's my day to inject. I'm so happy now. I just realized I'm gonna be alive for another week.
ZachOne more weekend.
Scott BennerOne more weekend? Yeah. 1,300. Are you kidding me? What in the hell, Zach? Oh my god. Alright. Is there anything that we didn't talk about that we should have? Anything that you want to bring up that I I talked around and wouldn't let you get to?
ZachNo. This was great. I hope you can weave together, something that's of interest to the listeners and just thanks again for doing what you do and then for allowing me to be a part of it.
Scott BennerOh, I was like, it's my pleasure. But please, if you think there's any weaving that goes on, Rob's gonna blur out where you said, said, two times I just said, here plus the one more, then people are getting it. We're gonna stick some ads on it, and it's gonna go up on the Internet.
ZachVery good. Sounds good to me.
Scott BennerWe don't chop up the conversations. We let them happen. Thank you very much, man. It's really great. Hold on one second for me. Okay? Yep.
Closing and Sponsors
Scott BennerTouched by Type one sponsored this episode of the Juice Box podcast. Check them out at touchedbytype1.org on Instagram and Facebook. Give them a follow. Go check out what they're doing. They are helping people with type one diabetes in ways you just can't imagine. Are you tired of getting a rash from your CGM adhesive? Give the Eversense three sixty five a try. Eversense c g m dot com slash juice box. Beautiful silicone that they use. It changes every day. Keeps it fresh. Not only that, you only have to change the sensor once a year. So, I mean, that's better.
Scott BennerToday's episode of the Juice Box podcast was sponsored by the new Tandem Mobi system and Control IQ Plus technology. Learn more and get started today at tandemdiabetes.com/juicebox. Check it out. Okay. Well, here we are at the end of the episode. You're still with me? Thank you. I really do appreciate that. What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribe in your podcast app, go to YouTube and follow me or Instagram, TikTok. Oh, gosh. Here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page. You don't wanna miss please, do you not know about the private group? You have to join the private group. As of this recording, it has 74,000 members. They're active talking about diabetes. Whatever you need to know, there's a conversation happening in there right now. And I'm there all the time. Tag me. I'll say hi. Hey. Do you need support? I have some stuff for you.
Scott BennerIt's all free. Juiceboxpodcast.com. Click on support in the menu. Let's see what you get there. A one c and blood glucose calculator. People love that. That's actually, I think, the most popular page on the website some months. A list of great endocrinologists from listeners. That's from all over the country. There's a link to the private Facebook group, to the Circle community, and, we have a a fantastic thing there, American Sign Language. There's a great sign language interpreter who did the entire Bold Beginnings series in ASL. So if you know anybody who would benefit from that, please send them that way. Just go to juiceboxpodcast.com and click on support. While you're there, check out the guides like the pre bolusing guide, fat and protein insulin calculator, oh gosh, thyroid, GLP, caregiver burnout. You should go to the website. Click around a little bit on those menus. It really there's a lot more there than you think. If you have a podcast and you need a fantastic editor, you want Rob from Wrong Way Recording. Listen. Truth be told, I'm, like, 20% smarter when Rob edits me. He takes out all the, like, gaps of time and when I go, and stuff like that. And it just I don't know, man. Like, I listen back and I'm like, why do I sound smarter? And then I remember because I did one smart thing. I hired Rob at wrongwayrecording.com.
#1830 72 Days Later - Part 1
Kelly opens up about raising two teens diagnosed with Type 1 at age six. She discusses international living , multiple miscarriages , alarm fatigue , and managing different sibling personalities.
Companies that Support Juicebox
Key Takeaways
- Early Symptom Awareness: Recognizing signs like excessive urination (saturated diapers) and extreme thirst is critical for a timely diagnosis, especially in toddlers.
- AI as a Medical Tool: Utilizing tools like ChatGPT can help parents synthesize symptoms and seek urgent care, though it requires verification by medical professionals.
- Rapid Tech Adoption: Moving quickly to CGM (Dexcom G7) and Automated Insulin Delivery (Omnipod 5) can lead to impressive initial outcomes, such as a GMI of 6.9 within the first 100 days.
- Dynamic Honeymoon Phase: Physical activity levels, such as starting daycare, can dramatically shift insulin needs and cause unpredictable blood sugar drops in newly diagnosed children.
- The "Why" of Autoimmunity: Statistical data shows a significant surge in autoimmune conditions over the last 40 years, likely driven by modern environmental and lifestyle factors rather than genetics alone.
Resources Mentioned
- Able Now: ablenow.com
- Dexcom G7: dexcom.com/juicebox
- Omnipod 5: omnipod.com/juicebox
- Integrated Diabetes Services: integrateddiabetes.com
- Juicebox Podcast Facebook Group: Join the Community
- Wrong Way Recording: wrongwayrecording.com
Introduction and New Beginnings
Scott Benner Welcome back, friends. You are listening to the Juice Box podcast.
Zach Alright. Hi, Scott. Thanks for having me. My name is Zach. Upstate New York is the location. My daughter was diagnosed with type one diabetes exactly seventy two days ago.
Scott Benner If your loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the bold beginnings series on the juice box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the Juice Box podcast.
Scott Benner The bold beginning series and all of the collections in the Juice Box podcast are available in your audio app and at juiceboxpodcast.com in the menu. While you're listening, please remember that 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.
Scott Benner This episode is sponsored by Able Now, tax advantaged savings accounts for eligible individuals with disabilities. If you or your child lives with diabetes, you may qualify for an ABLE account because of ongoing medical needs, and many people in the diabetes community do. With ABLE Now, you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid. Learn more and check your eligibility at ablenow.com. You spell that ablenow.com.
Scott Benner Today's episode is also sponsored by the Dexcom g seven, the same CGM that my daughter wears. Check it out now at dexcom.com/juicebox. The podcast is also sponsored today by the Omnipod five. And at my link, omnipod.com/juicebox, you can get yourself a free—what I just say?—a free Omnipod five starter kit. Free. Get out of here. Go click on that link. Omnipod.com/juicebox. Check it out. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox. Links in the show notes. Links at juiceboxpodcast.com.
Seventy-Two Days of Chaos
Zach Alright. Hi, Scott. Thanks for having me. My name is Zach. Upstate New York is the location. My daughter was diagnosed with type one diabetes exactly seventy two days ago.
Scott Benner Really? Yes. Wow. What has you here with me so quickly?
Zach Well, I guess I tend to go down rabbit holes, and I'm quickly discovering that type one diabetes may be the ultimate hole. It's a hole. Alright.
Scott Benner Yeah. There's a hole where I throw all my happiness and everything into. Yeah. Seventy two days ago. That's such a specific number. You're not, like, putting lines on the calendar or anything, are you?
Zach No. I did that math just this morning. I was trying to think of—you know, I don't have a story like your last guest, Lauren, on your Nobel award winning greatest podcast ever—so I was trying to think of what's interesting about my story. And I guess you might say the perspective I have is just sort of that first hundred days of chaos. Yeah. And I said, how many days has it been? December 27.
Scott Benner Yeah. Yeah. That's a story in itself. I'm glad you're doing this. But wait. Two days after Christmas?
Zach Yeah. Correct. Oh my goodness. Alright.
Scott Benner Well, let's find out about it. So prior to that day, anything on your radar, noticing changes, concerns, or did it all just happen at once?
Zach Yeah. So my daughter was saturating her diapers. Right? I know that's one of the most common things. We were, I think, maybe motivated to try to potty train her because our other daughter was born 10/13/2025. And so we didn't wanna have two in diapers, but it became sort of urgent when those diapers were multiplying seemingly.
Scott Benner Were you saying you don't wanna be buying diapers for two people is what your main focus?
Zach I wouldn't put it on the financial aspect or just the physical. So I'm a 41 year old father of a two and a half year old and a two month old. I already had a bad back going into it.
Scott Benner Zach, I feel like we need more background. Hold on a second. You have two kids. Is that right? Correct. Is this your first marriage?
Zach Yep. This is my first marriage. We started kinda late, I guess. We got married in 2017. So we took our time with the kids. Some of that was because, you know, we weren't a 100% set on it from the beginning. And the other part of it was because by the time we decided it was what we wanted in life, it had become a lot harder than it might have been if we started earlier.
IVF and Genetic Questions
Scott Benner You didn't have the energy to have sex, or there's just it wasn't taking—what was happening exactly?
Zach Who knows what the cause was? Undiagnosed infertility challenges we did have. So both kids were IVF, so they're actually fraternal twins. I don't know what that means in terms of the chance that my younger one will also be type one.
Scott Benner Oh, wait a minute. So you—if I use the wrong word, stop me—but you harvested two eggs, implanted one, then waited a little bit, and did the second one?
Zach Yeah. So the way it works with IVF often is you're trying to get a bunch of healthy embryos, and then they kind of study them and they figure out which one has the best genetics, and that's usually the first one they'll put in. And some of them don't make it through the process of freezing and studying the DNA and all of that. So, you know, if you get 12 eggs and then, you know, a certain number of them make it to day five, which is when they freeze them, so then maybe you're left with six eggs. And then they study the DNA, three of them have imperfect genetics, which is, you know, what causes miscarriages. So then maybe you just have, in our case, three good embryos. And this was after, you know, multiple other trials where we didn't even get any good embryos, and so that could have just been age. They don't know why that happened in our case.
Zach But eventually, you know, we had a beautiful daughter, and she's wonderful. But eventually, we learned she had type one diabetes. But yeah. So her sister was from the same clutch of eggs, and that's essentially the same thing as being fraternal twins.
Scott Benner Do they use the word clutch or did you just say that?
Zach No. I don't know where I got that term from, but it's sort of like when they take the eggs out of your wife, you know, it's like sort of a clutch of eggs. Yeah. No. I mean, that's a great term. I hear it all the time when people are breeding animals and reptiles and stuff like that.
Zach Well, that's what we're doing, Scott. Yeah. Yeah. I was like, by the way, when your first ends up with type one, do you go back to the doctor and go, like, you told me you pulled out the healthiest. Like, what were you looking at exactly?
Zach So, Scott, as you know, I think most people who get this diagnosis, they say, how did this happen? In our case, it's even more so because they've done all these assessments to make sure these are the perfect embryos. And—but I guess that in those tests that they run, there's not one that finds whatever codes for the precursors of type one diabetes even though after diagnosis, we found she had the two—what do they call it?—antibodies or whatever, two of the three markers that indicate you will eventually get diabetes, so they're able to confirm those.
AI Diagnosis and Hospitalization
Scott Benner I mean, I don't even have any idea if that's a thing they could look for in that stage. But—
Zach I guess maybe it develops later. The story does get a little better, Scott. So listen to this. Our second daughter is born, and my wife had some sort of, like, morning sickness, but the whole pregnancy, and that's called hyperemesis gravidarum. But, anyway, the baby comes out. The baby's healthy. She's a couple weeks early. She's okay on weight, but she is the first percentile of human height. So that combined with a couple other things, the doctor said, we wanna run a few more tests. This baby looks okay, but we wanna rule out a couple things. So I take that information. I enter it in chat GPT, and it tells me there is a one in seventy thousand chance that my daughter doesn't have a horrible genetic disease. So we are panicking from October to December that our second daughter has some rare condition.
Zach We—now all the tests they ran came out negative. She does, as far as we know, not have a rare genetic condition, but that was like a crisis in and of itself. And then our other older daughter gets diagnosed with type one diabetes after all that. And what happened one morning was my older daughter had an ear infection. I entered that along with, "hey, she's also been drinking a lot of water and saturating her diapers" into ChatGPT. And ChatGPT says, "go to the emergency room right now. Your daughter has type one diabetes." I tell my family this. They don't believe me because of what happened with the other daughter.
Scott Benner Yeah. No. AI told us the other kid was gonna grow a horn, and it didn't. So it's—wow. No. By the way, nobody trusts AI. So right. Did you lie and tell them you googled it? I might have done that if I was you.
Zach No. I was honest. Yeah. My wife wanted me to go to the doctor for the ear infection, so I went and they pricked her finger as soon as I told them about the excessive urination.
Scott Benner How about that? There it is. Yeah. My goodness. Well, how long do you think it would have gone on for if you didn't go to ChatGPT and just ask it? Do you think you would have figured it out on your own without something just mirroring right back to you and going, hey, that's—
Zach You know, what's interesting about that question, Scott, is that so far, other than maybe some crankiness with highs, our daughter doesn't have the recognizable symptoms of highs or lows. And so I don't know how we would have known something was up other than the urination becoming intense, which, you know, I was like, well, maybe she's just, like, too big for the diapers now, and that's why they keep filling up so quickly.
Scott Benner I had all those same kind of silly thoughts. How old is she exactly when she was diagnosed?
Zach So she'll be three on April 15.
Scott Benner April. So it was December. She was—
Zach Two and a half ish. Arden was, like, a month past her second birthday. Yeah. I know. And we had that whole vibe thing going on too, like, the heavy diapers, and Arden was sicker than what you're describing.
Zach Yeah. So they said we were in DKA, but maybe a mild form of it. So I think the acid wasn't too high or the ketones. Her blood sugar was about five eighty five. Our A1C at diagnosis was 12.2.
Scott Benner You would have—I'm guessing it would have rolled over her pretty quickly in the coming weeks if you wouldn't have figured it out right then. So good job. Yeah. I mean, I'd hate to know what that looks like.
Management and Open Source Exploration
Scott Benner No. It's not a lot of fun. So well done. I hope you felt good about it. I mean, I know that's a hard thing to say, but, like, you figured something out and saved her a lot of heartache.
Zach Yeah. I guess maybe in a way. So day 72, I'm looking at a fourteen day GMI—if most of your audience knows what that is—of 6.9. We just crossed over that threshold from seven, which feels like a win. Feels like we're getting somewhere.
Scott Benner Well, no. That's insane. Like, how are you accomplishing that? I mean, she's three. Right?
Zach Yeah. So within two weeks, we were on a Dexcom. In less than a month, we were on an Omnipod five. We have been to our local pedendo practice who we got frustrated with, maybe unfairly because I was deep down the rabbit hole, and they weren't there with me quite so quickly. You know, as you know, some of the doctors are pretty conservative and guarded, especially with the little one trying to avoid lows. Right? Well, what does that mean? That means highs. So, you know, we then went to specialists at Yale, but they don't take insurance out of state. So now we're working with Columbia, and we've brought Jenny's firm Integrated into the mix. And we're not stopping. We're on Omnipod five, but we may be on Trio pretty soon here.
Scott Benner You think you might try a DIY system?
Zach I think so. I mean, I haven't listened to too many open source episodes yet, but I look forward to doing so. I mean, if I read the tea leaves on the forums, if I listen to the way a diabetic reviews Tandem or an Omnipod five, you'll hear things like, "but I'll never get the control I get on open source." So my instinct is let's go. You know? Let's do as good as we possibly can for my daughter.
Scott Benner Yeah. I mean, don't know, man. It's—I think it's so personal and variable specific, right, down to, like, how active you are, how you eat, how particular you are about making sure your settings are good, pre-bolus. And there's a lot of different things. Right? So I see people do incredibly well on retail systems and all of them. Like, forget Omnipod five—but, yeah, I see people do well on all of them. I can never tell—I guess what I would wanna say is that I can never tell when someone's online and they're like, you know, product A, I didn't like, but product B is perfect for me. Sometimes I sit back and I wonder, like, is it maybe that they just learned more between the first one and the second one?
Zach There's definitely some truth to that, Scott.
Scott Benner Yeah. You know what I mean? Like, because you can make reasonable arguments for all the different algorithms. Right? Like, you say, well, Medtronic has that meal detection technology. I hear people who love that, love that. And there's people who are telling you, like, Omnipod five, like, look, it is, like, truly tubeless. That is incredibly important to me. People on Tandem talk about how well Tandem goes now. People are using Twist and enjoying that and etcetera. Like, they all seem pretty similar to me. Right? When they say personalized, I think there's just a lot more to it than that. And when somebody tells you they did vastly better on one than the other, it is always gonna make me wonder if I was there, what would I see that they're not seeing?
Sponsorship and Daily Management
Scott Benner The Dexcom g seven is sponsoring this episode of the Juice Box podcast, and it features a lightning fast thirty minute warm up time. That's right. From the time you put on the Dexcom g seven till the time you're getting readings, thirty minutes. That's pretty great. It also has a twelve hour grace period, so you can swap your sensor when it's convenient for you. All that on top of it being small, accurate, incredibly wearable, and light, these things, in my opinion, make the Dexcom g seven a no brainer. The Dexcom g seven comes with way more than just this. Up to 10 people can follow you. You can use it with type one, type two, or gestational diabetes. It's covered by all sorts of insurances and—this might be the best part—alerts and alarms that are customizable so that you can be alerted at the levels that make sense to you. Dexcom.com/juicebox. Links in the show notes. Links at juiceboxpodcast.com to Dexcom and all of the sponsors. When you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful.
Scott Benner Today's episode is brought to you by Omnipod. Did you know that the majority of Omnipod five users pay less than $30 per month at the pharmacy? That's less than $1 a day for tube free automated insulin delivery. And a third of Omnipod five users pay $0 per month. You heard that right. Zero. That's less than your daily coffee for all of the benefits of tubeless, waterproof, automated insulin delivery. My daughter has been wearing an Omnipod every day since she was four years old. She's about to be 21. My family relies on Omnipod, and I think you'll love it. And you can try it for free right now by requesting your free starter kit today at my link, omnipod.com/juicebox. Omnipod has been an advertiser for a decade. But even if they weren't, I would tell you proudly, my daughter wears an omnipod. Omnipod.com/juicebox. Terms and conditions apply. Eligibility may vary. Why don't you get yourself that free starter kit? Full terms and conditions can be found at omnipod.com/juicebox.
Zach Maybe I can give you a sense of who you're talking to, Scott. So I'm not a very good golfer, but you should see how many golf clubs I have in my basement.
Scott Benner Think you're gonna own all these insulin pumps by 2027 maybe?
Zach That may be where the sense of—
Scott Benner Why is that? Why do you think? I've seen people collect insulin pump systems before too. They're always switching.
Zach Yeah. So I think we need to get to a stasis pretty quickly for our own sanity. There's one feature of Trio that's particularly compelling. I think maybe Loop has it as well, but it's a remote bolus feature. The reason why that's important is my daughter recently returned to a daycare that my wife has been at all day helping them learn—that does not have a nurse. Today's actually the first day she's not there. And so Trio will give us the ability to do remote bolus. Now on the one hand, the better solution might be the Omnipod five as a very simple interface. Right? Let's get the staff trained and trust them. You know, if we switch to Trio with remote bolus, the onus might be back on us to manage her diabetes all day. But then I hear Lauren talk about the 150 units, and I'm pretty sure which I prefer.
Scott Benner Oh, that's the one you're talking about. Oh, yeah. We just reran—
Zach Oh, was that a rerun?
Scott Benner Yeah. We reran school nurse mistake as the best of this week. It is really interesting, isn't it? Well, listen, man. I'm probably gonna sound opposite of what people are expecting me to say, but if you're a three year old who's only had diabetes for seventy two days, has a 6.9 A1C, I don't think I'd be in a huge hurry to change anything. I think that's pretty great.
Zach Yeah. Well, thank you. That makes me feel good. But too bad, Scott, because I'm—would you like to see my other putter?
Scott Benner I don't know. I really think it was the putter. It doesn't go in the hole. No, man. I think I'd ride it for a while just to see, like, what it is you can figure out. Because like you said, like, it's easy for, you know, people at day care to understand. What is your fear? Take the joking aside for a second. Like, what do you feel like isn't happening that needs to happen?
Financial Savings and Long-Term Care
Scott Benner As I told you earlier, Able Now is sponsoring this episode. Able Now, of course, tax advantaged Able accounts for eligible individuals with disabilities. If you or your child lives with diabetes, you may qualify for an ABLE account because of ongoing medical needs. Many people in the diabetes community do. With ABLE now, you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid. And thanks to updates to federal law, ABLE accounts are now available to more people than ever before. That means more individuals and families can use ABLE now to save and invest. Funds in an ABLE now account can be used for a wide range of everyday needs, including education, transportation, health care, assistive technology, and more. There's no enrollment fee, and you can open an Able Now account with a small initial contribution and build from there. Learn more and check your eligibility at ablenow.com. That's ablenow.com.
Zach Yeah. I mean, so you're speaking to someone who is in a current right now that will not stop moving of information and experiences managing diabetes. Right? So and I guess it's possible I'm not giving each iteration enough time to have its full effect. But I have heard things from clinicians who have said things like "my patients on Omnipod five are here, my patients on Tandem Mobi are here," and I don't even know what open source is. So there are some people suggesting better control, but I know—I guess when you say Arden's been on Omnipod for fourteen years, you don't mean Dash plus open source. You mean Omnipod five.
Scott Benner No. Arden uses Trio. And before that, Loop, and before that Omnipod five and Dash before that. She used to have the Arrows pod too. Arden's been using Omnipod since she was, like, four maybe. But what I'm saying to you is—and maybe I'm wrong—maybe you've jammed your brain so full of information that you're not at that point yet, but I would wonder if you even know why you're turning the knobs you're turning at this point. Like, maybe you just need more experience, time in the simulator.
Zach When we're high and we're actively giving corrections and somebody tells you, "you shouldn't have to do that, you need a more powerful algorithm that will do some of that for you." That's the kind of thing that makes me wanna switch. Right?
Scott Benner How many times are you correcting during the day?
Zach Oh, I don't know. I'd have to count, I guess. But, you know, we've had some pretty good days at day care, but there's a lot going on there. You know, she's a toddler. Right? We don't know how much she's gonna eat. So we do the partial pre-bolus, and then we do the rest when we see how much she ate. Right? Yeah. So what that means is you're gonna have timing issues with your insulin, and then you're gonna start chasing things here and there and giving gummies at the bottom and, you know, the roller coaster and just trying to tighten the roller coaster and find those rolling hills.
Scott Benner I'm wondering, like, how many times do you have to interact with it over and above the bolusing for the meals?
Zach Well, I don't know. There's two boluses per meal in theory except when she's like, "I want more berries. I want a banana." You're just giving more and more and more, you know, if you're behind the curve.
Scott Benner What's your expectation that—Trio is an example—what's your expectation that Trio would do that Omnipod five isn't doing?
Zach Well, if there's three moments a day where we're going from 200 to two fifty and giving three corrections as it creeps up and none of them seem to be powerful enough—even though, really, we're probably just not waiting long enough for the insulin to work—maybe with Trio, we give one correction, but because the basal's already more aggressively chasing it, we don't have to do as many of those. I guess that's the theory.
Honeymooning and the "Reptile Expert" Analogy
Scott Benner I know I've probably mentioned more than enough times that I have a couple of reptiles that I keep. And I talk to people who are experts. Like, I've made a couple of, like, close friends who have been doing this for a really long time and have decades and decades of experience, and they'll tell you the same thing. You can buy an automated misting system for your reptile's cage. So you can put it on a timer, and it'll squirt at a certain time for as long as you want and keep the humidity where you want it to. But most of those experts will tell you, when you first get the animal, just get a bottle and mist them by hand because it makes you get in front of the cage and look at it, and it makes you just experience it and have touch points, and you learn by standing there doing it yourself a little bit. And then, you know, you'll figure out where the impacts are coming from and where you need a little more water and a little less or etcetera and so on. And then you'd go ahead and buy that system if you want to that does it automatically because you'll know how to set it up right. And I feel like it's the seventy two days thing. If this was six months into this or a year into this, I'd be like, yeah, man. Follow your heart. I don't think you know enough yet to know what you don't know. You got good energy. Obviously, there's a lot of caffeine going on over there.
Zach I'm on prednisone, you know, because we've gotten, like, the flu four times this year, Scott.
Scott Benner Anything better than a steroid pack high as an older man? Your back probably isn't even stiff right now.
Zach That's exactly right. I was sitting in the car this morning and thinking to myself, is there some safe way to get this effect on a regular basis?
Scott Benner There's not. I'm afraid. You can't take the steroid pack for long or too many times in a certain year. I guess let's start over for a second. You leave that hospital with a little baby at New Year's. Terrible. You said you had a CGM pretty quickly. Obviously, they got you on Omnipod five pretty quickly. And she's at day care, or were you guys home with her for a while before she went back to day care?
Zach So we get out of the hospital on December 30, or they kick us out, I should say. We're scared to go home, but they kick us out three days later or so. And she gets back to supervised day care February, so just a couple weeks ago. And this is another fascinating thing, Scott. So her honeymooning behavior changed when her activity level went up and she went back to day care. So we're in Upstate New York. There's been a two foot snowpack since November. Right? So it's hard to get the kids active. And as soon as she goes back to day care—she goes from this aggressive honeymoon where with no insulin on board sometime after 2AM, she drops out of the sky, like, 200 points. And now that she's at daycare, she's more stable overnight. She's going low over and over again during the day. So that's been fascinating to kind of observe.
Scott Benner It's only been a couple weeks then. But you're experiencing lows every day? Around food or after food?
Zach It's in between the meals probably once the pre-bolusing and then the post-meal bolusing finally starts kicking in and she's running around with her classmates, and we get lows. Yeah. We think there is still a honeymoon existing. Her c-peptide was 0.3. So she didn't have much pancreas activity left, but, apparently, that's still enough to produce some insulin. And given that we know, you know, six hours after we've given her any insulin at night that she could drop 200 points, I think we're pretty sure the honeymoon is still active.
Lifestyle and Diet
Zach We're trying around the edges to control. One of the things that's been really interesting, Scott, is the idea of trying to learn how to bolus for anything versus—I started making my own chicken nuggets. Let's offer lower carb options. Let's have cottage cheese for breakfast. Let's put the strawberries in and not the pineapple and the blueberries because we're learning about glycemic index. There's an individual named David who's very active in some of the forums online—I think he's in Australia somewhere—and his kid's 99% in range. And he's super low carb. I don't think it's gonna be easy for us to get there right now. Because if our daughter doesn't have what her classmates are eating, she's gonna throw a fit.
Scott Benner You're so new to this. I wish I could explain to you how new you are because you've done a great job of, like, absorbing a lot in a short amount of time. Is that your nature?
Zach Yeah. I mean, I'm a management consultant. I used to work in the health care industry. Now I work in the water and sewer industry. I deal with a lot of technical information, so I guess it's in my nature. Researcher. Honestly, my first reaction to the question of what I've learned is just the humanity of the diabetes community. It just warms your heart. All these people kind of struggling together and thriving together. I can't tell you how many people I spoke to in those first few weeks just because you find a family friend who knows somebody who knows somebody who has type one, and they say, "please give me a call. I've been there." This whole idea that open source exists, Scott, is completely absurd. There are some people who would never trust it, right, because they don't trust technology at all. There's the MDI crowd.
Scott Benner I have a great interview somewhere of an older woman who just said she's like, "I don't know. The pumps, they scare me." And I asked her why, and she's like, "well, what if China hacks into my pump?"
Zach No. But I understand the perspective. I'm amazed by the open source community. By the way that this community has sort of grabbed ahold of this disease and is trying to wrangle it. I met somebody in a local shop who was a diabetic and told me that she calls her diabetes her dragon. You can never control it, but you try to manage it the best you can. But just this great community that's kind of grown up to help each other through it has been absolutely inspiring. Of all the positives you can take from diabetes, I'd give it away tomorrow. I'd do anything to get rid of it for my daughter tomorrow.
The Surge in Autoimmune Conditions
Scott Benner I don't think there should be any reason for you to rush to make a change. I think that you should probably absorb just more time in the simulator so you can make a better decision. If you expect Trio to just solve all of the problems you're having, I don't know that that's gonna happen.
Zach We're 75% in range over the last two weeks with a 46 standard deviation. We're only seven and a half units a day, basal and bolus combined. She's so small, probably thirty seven pounds. Her vocabulary has blossomed. I mean, getting insulin into every cell in her body, you can see neurological effects. It's just been amazing. Is there an episode you guys have done that's talked about these environmental factors that they suspect are driving up the rates of T1D in our youth in this country?
Scott Benner You think they're moving up?
Zach Yeah. Marty McCary, who's the head of the FDA right now, I heard in an interview say that one in six girls born today is diagnosed with an autoimmune condition, and they do not know why.
Scott Benner Yeah. There's a lot of autoimmune. To diabetes specifically, the one thing that has always kinda struck me in the last couple of years is how many people are diagnosed after an illness, but kinda more specifically a virus. So if the whole world got a virus in 2020, it makes sense to me that more people were diagnosed after that.
Zach That's fair. But in theory, those people would have gotten it anyway, Scott. My understanding is that the incidence has gone up significantly over more like a forty year time frame.
Scott Benner Let's ask the magic machine. I have Gemini Pro here. "The incidence and prevalence of autoimmune disease in the US has accelerated significantly over the past forty years, increasing at a much steeper rate than it did the forty years prior. Genetics play a role in autoimmunity, but human DNA does not mutate fast enough to account for such massive population-wide spikes in just a few decades. This points to modern environmental and lifestyle shifts as primary drivers. Researchers tested preserved blood samples and found that the prevalence of antinuclear antibodies jumped from eleven percent in '88 to sixteen point one percent in 2012. The prevalence of type one has nearly doubled in the past forty years, and celiac disease has increased fivefold."
Zach That's what I'm talking about. Nobody knows why, Scott.
Scott Benner Food's probably worse. Stuff we spray to keep weeds down. At some point in our history, everybody's growing food on their property. It works until there's a bazillion people and somebody says, "what if we put all that stuff in a pile and made food out of it that didn't rot right away?" Go buy a loaf of bread from a bakery and it's green in four days, but the other stuff isn't. You start microwaving plastic, all those processed oils—it can't be good.
Zach Did you guys go, like, all glass everything? Is that part of where your diabetes journey took you?
Scott Benner We don't use much plastic here. We don't use Teflon pans. There's coconut oil and olive oil. But I don't know, man. Like, maybe there's radon in my basement. What am I gonna do? We all gotta live here. There's no other place to go.
Zach I know you're doing something right, Scott. And I just hope for the same success for my daughter that your daughters have. Seventy two days in, here we go.
Scott Benner Let's call the episode "Seventy Two Days Later." I've been messing with a little reference library at juiceboxpodcast.com/jbpaiex for 32 different autoimmune conditions. You can check off symptoms like depression, back pain, fatigue, and it shows you overlaps. It's not a diagnostic tool, just educational. This is part one. Make sure you find part two in your feed right now.
Scott Benner I can't thank you enough for listening. Please make sure you're subscribed. I'll be back tomorrow. Check out the private Facebook group—beautiful group, wonderful people. Juice Box podcast, type one diabetes on Facebook. If you want your podcast to sound fantastic, Wrongwayrecording.com.
#1829 Relationships that Heal: Affection, Connection, and T1D Safety Nets
Scott Benner and Erika Forsyth explore the landmark ACE study , introducing how positive childhood experiences (PCEs) build resilience and counteract early stress for families.
Companies that Support Juicebox
Key Takeaways
- Having affectionate, steady caregivers who respond calmly during highs, lows, and nighttime checks helps children feel safe rather than like a burden—check your facial expressions and vocal reactions around blood sugar numbers.
- Instead of saying "I get it" when your child with diabetes is frustrated, acknowledge that while you understand the caregiving burden, you don't experience what they physically go through—this validates rather than dismisses their feelings.
- Find at least one adult outside your home (teacher, coach, neighbor, or mentor) who genuinely understands your child's diabetes and can be a quiet safety net—this reduces isolation and shame.
- Helping your child stay part of groups (sports teams, activities, support groups) after diagnosis reduces the "why me?" mentality and normalizes their experience even while managing blood sugars.
- The best thing caregivers can do for their children is manage their own trauma around the diagnosis—unresolved parental stress transmits directly to children and affects their nervous system regulation.
Resources Mentioned
- Medtronic Diabetes - MiniMed 780G system with Instinct sensor
- Contour Next Gen - Blood glucose meter
- "Childhood Disrupted" by Donna Jackson Nakazawa - Book on how trauma becomes biology and how to heal
- PACEs Connection Science Initiative - Research on protective and compensatory experiences
- Juice Box Podcast Private Facebook Group - Community support for diabetes families
Introduction to the PACEs Series
ScottHello, friends, and welcome back to another episode of the Juice Box podcast. Hello, friends. Welcome back to the second episode of the Paces series with myself and Erica Forsyth. Living with type one diabetes means dealing with stress, uncertainty, and a lot of daily decisions, But research tells us something encouraging. Supportive relationships can actually buffer stress and help the brain handle challenges more commonly.
ScottIn this episode, we're looking at the first category of PACEs, protective and compensatory experiences. We'll talk about the people who make a difference, caregivers, friends, teachers, and communities, and how those connections can build resilience, confidence, and emotional safety for people living with diabetes. If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group. Juice Box Podcast, type one diabetes. But everybody is welcome.
ScottType one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook. 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. Today's podcast episode is sponsored by Medtronic Diabetes, who is making life with diabetes easier with the MiniMed seven eighty g system and their new sensor options, which include the Instinct sensor made by Abbott.
ScottWould you like to unleash the full potential of the MiniMed seven eighty g system? You can do that at my link, medtronicdiabetes.com/juicebox. Today's episode is also sponsored by the Kontoor Next Gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at contournext.com/juicebox.
Understanding Protective and Compensatory Experiences
ScottErica, it is part two of our pace series, episode two. I don't know how we'll end up, like, breaking these down. And I see here by your header, proactive and compensatory experiences. Is that where we're starting today?
ErikaYes. Well, we're gonna start yes. So in our first episode on the PACE series, we've kind of reviewed the ACE study. We then talked about so those are the adverse childhood experiences we talked about. As a result of that landmark study, there were positive childhood experiences that were analyzed because we wanted to discover what makes these children who've had exposure to the ACEs land well and show resilience.
ErikaSo we talked about what the the positive childhood experiences are, and then we talked about and sometimes people call it now that your PACE score, your positive and adverse childhood experience. And so then what we're gonna be talking about, though, are the the PACE, the protective and compensatory experiences that can be applied even after you've been exposed to trauma as a child. And that was research that was and and the paper that was written by Amanda Sheffield Morris and Jennifer Hayes Grudeau that was published in January 2023. So we're gonna be kind of focusing on those protective and compensatory experiences.
ScottI I think that's exciting. I probably mentioned it before, but, you know, if the idea is, you know, you've had a certain number of these things from this aces list by the way, if you haven't heard part one, don't even listen to this. You gotta go listen to part one first or it's not gonna make a ton of sense to you. Once you've understood those that list, that ACEs list and how it can impact people, the next question I had was, you know, is there a list of things that happens to people that maybe points to a better outcome for them as as an adult? And then through that learning that not only is that possible, but you maybe could take some of these things and go back and reapply them to people who have had adverse experiences in their life and and change it for them.
ScottI I found that to be, like, the kinda most exciting part of what we talked about last time. So I am, I'm good to go to dig into this. So wherever you wanna start, please do.
ErikaOkay. Great. I I wanted to add as we were kind of thinking about this series and I was researching, I came across an additional resource that I thought would be helpful to share. I have not read this book personally, but the author is Donna Jackson Nakazawa. Nakazawa. Hope I'm pronouncing that correctly. And she wrote a book called childhood disrupted, how your biography becomes your biology and how you can heal. And, basically, the the summary she describes the summary of this book that no matter how old you are or how old your child may be, there are scientifically supported and relatively simple steps that you can take to reboot the brain, create new pathways that promote healing, and come back to who it is you were meant to be. So I just wanted to share that as a resource as we talk about these experiences, that you can dig dig deeper.
ErikaThere's lots of great resources from her website and also the PACE PACE's connection science initiative. So with that, we're gonna we talked about there's two different parts with these protective and compensatory experiences. The first one that we're gonna be talking about today, the first category are is relationships that heal, and the second one is resources that build skills and resilience, which we're gonna talk about in the next episode.
Why Supportive Relationships Matter in Diabetes
ErikaSo why is it important that we we're we're gonna kind of talk about this through the the lens of living with diabetes, these, different categories. But, yeah, obviously, it's important. Living with diabetes, you're it's full. We know of so many stressful moments. And so having these supportive relationships that we're gonna discuss can buffer those stressors.
ErikaThey can heal some of those stressors and teach the brain you're you're not alone. That this is this is hard, but you're safe. Right? We're always wanting to come back to what is the child and you as an adult experiencing a safety in your body. And so these relationships and these connections can change how the brain handles stress.
ErikaSo that is the important part that even if you're listening to these things and as an adult and you did not have these experiences, they you can work on them, apply them, and it can actually rewire the brain and heal. One other note before we go on to talking, if you're listening to these five different points that we're gonna talk about that that nobody is pair is perfect. No parent is perfect. And I just invite you to hold grace for yourself if you're listening to these things and you think, gosh. I don't do that, or I do that really well, or gosh.
ErikaI don't I can't do any of these things. This is not prescriptive. This is hopefully helpful and supportive, but we're not this is not supposed to lead to shame.
ScottRight. No. Absolutely. No. Please. Please don't let that be the takeaway. Right.
Point 1: Affectionate, Steady Caregivers
ErikaSo the first one is number one, having affectionate, steady caregivers. In your life as a child. I thought it might be helpful to talk about, yeah, what does that look like with living with type one or or diabetes in general. So having a parent who does nighttime checks without shame or anger. So you might you might feel that irritation of having to the alarm goes off, but kind of checking yourself, taking a breath before he needed to go into the room. Even though the child is asleep, people with diabetes are very attuned to all sorts of thoughts, responses, facial expressions and being really aware that they don't want their diabetes to be an irritation for other people.
ScottYeah. They don't wanna feel like they're the reason you're upset, sad, whatever. So it's up to you to not I think not just reflect that onto them, but to not feel that way. Like, you have to figure out a way to go in and do that blood sugar check gracefully, you know, in a way that makes people feel like, this is nowhere else this guy would rather be right now but helping me. And that can be tricky. I'm sorry. Go to the next one.
ErikaBe tricky. Yes. When your child's presenting as an affectionate steady caregiver, when your child is high or low? I know I am not I my children do not have type one, so I do not know what it's like to be a caregiver to someone with type one. But I do hear stories from the children and teens that I work with.
ErikaAnd when they are experiencing a higher low, if they're sitting across from their caregiver who is panicking, who is annoyed, who is scared. I hear all of those things, and I understand why you might be feeling those things as a caregiver. It can then it's triggering the child's nervous system that this high or low is really bad or I'm bad or this is really scary. And some of those things, it is scary to be high or low sometimes. So I'm not trying to dismiss that. But just being mindful of how you're showing up when your child is high or low and how that might be interpreted within your 10 year old or your 16 year old.
ScottMy wife stopped me years ago now, and I don't think it's a thing that I adjusted immediately. But she's like, every time you see a number that you don't like, she's like, you kinda mutter under your breath. Like, or you'll you'll go like, oh, something like that. And she's like that like, Arden hears that. She's like, I hear it. It makes me nervous. And I was like, okay. And it's funny because I never I wasn't angry. I didn't mean anything by it. I think it was just like a like a throwaway reaction that I was having that had an impact on other people I didn't realize. So I I appreciate somebody having pointed it out to me. I wish it was something I would have been able to adjust more quickly than I did, but it is something that I I got handled eventually. Still, I I I guarantee it had adverse effects on on art and the people around me. But yeah. And unknowingly too. Sorry.
ErikaYes. No. That's good. It's a good example. Yeah. So having being being a parent or caregiver who comforts your child during site changes or, you know, pump failures or hospitalizations. Donna points out in the research the author I referenced earlier, the significance of eye contact that we talked a little bit about in the first episode and and a twenty second hug. So we're talking not only about kind of physical emotional affection, but also physical affection and what that does to the nervous system.
ErikaI hear so many fabulous and wonderful examples of support for your child during some of these traumatic things. One thing I also wanted to highlight is a common maybe frustration that I hear from the the children and teens I work with is when a parent might say, like, I get it. So the the child is maybe feeling frustrated about a a pump change or having to treat a low or having to wait to eat because they're high, and the parent might say, I get it. Now I understand. I'm guessing as the caregiver, you're trying to connect with your child.
ErikaYou're trying to make them feel less alone in that moment. I understand you're not saying I get it because I have type one. Right? Unless maybe you do. And then that's the separate situation. But what the child is hearing in that moment is not connect. They aren't feeling connected. They're feeling like, no. You you don't get it. You don't have type one. I know you're getting it that you're getting the burden, the burnout of of of dealing with the chronic illness, of dealing with the diabetes. But what the child might be feeling in that moment is, well, you don't get it. You're not having to be aware of, you know, when you're going to the bathroom and pulling your pants down and not wanting to rip off your pump site. You don't get, like, having the beeps go off and all your friends looking at you.
ErikaSo just being mindful of when you are wanting to connect and show that affection and that connection with your child, maybe saying, you know, this is really hard. Or you're wanting to show up for them. You're wanting to calm their nervous system, but be mindful of that word, that phrase, like, I get it. Because you get it as a caregiver, but not as someone living with it.
ScottIt's more than just a difference in wording. There really is the the truth is, no, you don't. You're empathetic and you you know, to me, it runs right along with, I would take this from you if I could. Like, please don't say that. Like, because you can't. So it's pretty falls pretty hollow when when you say something like that to somebody. But I I even think the thing I try to do, I don't think is perfect. Because now that Arden's older, I'll say, you know, I'm, I look. I'm doing my best to understand what's happening to you. I completely understand that I don't know how you feel, but I, you know, I see this as hard. Even that, I think, is, like, I think that's better, but I don't think that fixes the problem.
Managing Your Own Trauma as a Caregiver
ErikaBut you can also go back and repair to say, Tommy, you know what? Those times I've said I get it because I'm trying to support you and I'm trying to, like, connect with you. I realized I I don't get it the way you get it. And I'm so sorry.
ScottAnd you can almost let it go for them if you if you come back with that apology. It occurred to me while you were speaking a minute ago that there are probably people out there that are like, oh, there's burnout. It either happens to you or you don't. But I think that's because of the word maybe. Like, they they think of burnout as like a flame out, like a complete, like, collapse. I believe that every person living with a chronic illness is going to experience some version or level or degree of burnout constantly. And I don't think there's a way around it. I don't think you're gonna get rid of it. I just think it's a fact of the situation. And you you can't possibly you're not just either living fancy free with this or you're collapsed on the side and need therapy. Like, it's not it's not a one or the other situation, but I do think it gets treated like that sometimes. I just think that there's, a spectrum of what that looks like from very low level to I can't even begin to take care of myself anymore and everywhere in between, and I don't think that there's anybody not living in that spectrum that I've met so far.
ErikaYeah. That's a good point. Yes. And and on that spectrum, if you because you are I guess we're speaking mainly to caregivers right now. You know, if you have had your own medical trauma from seeing your child just either live with diabetes, have a seizure, be in the hospital, a diagnosis, or DKA, it's important to do your own work to process the trauma because so often, again, unintentionally, it might spill over that you are experiencing a traumatic response every time your child has a sight change or every time your child gets sick and you're running through this, oh, no.
ErikaLast time you got sick, well, you had to go to the hospital because he got into DKA. And so that is running through your body and and understandably so, but you don't want us that it it can become indirectly placed on your child's diabetes and then directly internalized by your child that that they are a problem or that they're scary and what they have is scary.
ScottAnd and I don't think we could say enough times that it's this is not anybody pointing to you and saying, like, look, you're doing a wrong thing. But you also need to I do think you need to see the connection between you know, the reason that aces list is interesting to me is because if you experienced these things growing up, like, somebody's physically harmful to a spouse or your mother to your father, your father to your mother in your household. Right? And then you see that growing up, it has detrimental effects on you. And it's easy to say, well, yeah. Well, the mom just shouldn't have punched the dad or the dad shouldn't have yelled at the mom, whatever it was. Right? But if you go back a generation, you'll see why that happened to them. Right? Like, somebody did something in front of them that caused that. And while that's true and completely excusable, I think, because you are now wired that way and not necessarily how you want to be, I understand both arguments that you should be an adult and overcome that and not do that. I also understand the argument that says that, like, maybe it is beyond your control. You don't have the tools or the knowledge to stop it.
ScottNone of that makes it untrue though. So, like, if that's the case and you flip this over into diabetes and what you just said is, like, you've got your own medical trauma. You've watched your kid go through this thing. You're having your own reaction. That's all true. You're welcome to that, but you cannot ignore what the outcome of that's going to be when you do that then in front of your kid later. They are going to carry some baggage forward with them because of your experience and how that experience came out in front of them. Does that all sound right?
ErikaYes. And your this quote that I found from Donna again, I have no personal connection to her. I've not read her material, but it's connected to a lot of this ACE and PACE work. She says the best thing we can do for the children we care for is to manage our own stuff. Adults who've resolved their own trauma help kids feel safe. So that's, yeah, kind of just from from the research, and it's hard. It's like, when do you have the time to do that? You're just trying to keep yourself and your child alive. I I totally hear that. And, hopefully, through some of these conversations things get a little better. Some tools.
ScottThat's all yeah. That's all you're looking for. I mean, not no. I don't think I don't think any of us are getting to perfect, but we certainly could be moving in the right direction. And running off and living in a cave is not the answer either. You can't just remove yourself from the situation thinking they'd be better off without me or, by the way, not leaving the house, but removing yourself emotionally thinking as if I'm not interacting with them, at least they won't get my crap. They're just gonna get different crap from that. Ain't no winning. There's only levels of not losing. Okay?
Point 2: Having a Best Friend
ErikaOkay. Here we go. So well, let's move on. Yep. The number two, and there's five of them, is having a best friend. And so what does that look like for two with living with diabetes? So a friend maybe having a friend who knows and could even actually verbalize and advocate for your your child with diabetes. Like, oh, she she needs like, if she's eating in class, let's say you're low, and you need to treat your low. Your best friend sitting next to you is kind of like your protector. Like, oh, she needs to eat sometimes. Or you know, he he has a pump. It's okay. Or when the sub says, who's, you know, who's beeping back there? No phones allowed. The best friend can say, it's a medical device. You know? I'm, like, shouting, you know to to the teacher. She needs it. And not that you want it you need to be reliant upon that best friend all the time, but it just it does kind of share some of that burden of advocacy.
ScottI don't wanna go too far down the rabbit hole, but, also, if you're that friend, get ready to be a nurse later in life, you know, because, like, this experience is gonna put you into a caregiver role in your and you're not even gonna realize it. The spider web that is personal interaction is fascinating. Like, right, because the the minute you become that person's best friend, it changes probably the direction your life goes. You don't even realize. But very valuable community in general. And a community I just got done saying this to somebody. A community can be two people. It really can be. So you need a little bit there. It doesn't have to be a thousand people for it to be a community.
ErikaNo. It's good. And and having this best friend and this can be, you know, if you're adult living with diabetes who who doesn't act annoyed or scared or surprised, who someone who maybe you don't feel like you have to apologize in front of. You know, we in the body grease series, we talked a lot about how we live in a in a stage of apology often. I'm sorry. I gotta change. Like, are you okay if I do this thing right here right now? So someone who really gets it in that way. And then having a buddy, like, maybe as a caregiver, you trust not only the family, but the friend who can be another person of lookout for sleepovers or after school activities, field trips, and such. And what this does for the the person living with diabetes is you you feel less alone.
ErikaEven though they don't have it, your best friend does not have type one, that maybe they do. That would be kinda cool. But even if they don't, knowing that someone truly gets as much as if they can and is your peer reduces that isolation and kind of normalizes the experience, and you're not the one always having to advocate or explain.
Point 3: Adults Who Stand By Your Child
ErikaAnd the third one, adults other than caregivers who stand by the child during hard times. So this one might take some education, right, from you as the caregiver, from a team, a medical team. So this is gonna take a little bit extra work. But what does it look like to have an adult who stands by your the child with diabetes during hard times, having a teacher who really gets the highs and lows and is super aware of their nonverbals. And this applies to also nurses and coaches. If you have either a sugar pixel or something in the room or maybe they can hear the alarms, maybe they're following. You know, there's everyone has different setups. But for at school, having a nurse and a teacher and or a coach or PE teacher who really gets it and isn't doesn't show in a sense of annoyance, but real empathy and compassion. And, again, that if you don't if that if those things feel impossible, there are other ways. But I know just thinking about, you know, where your child spends most of the days at school. And so having one or it doesn't have to be all of them. And it doesn't have to be it could be just like the the library instructor. It could be one other adult in your child's life who really gets it.
ScottSo instead of, like, a health advocate, almost like a like a happiness advocate or a totem in your life that you walk past once in a while and you just look up and you go, there's there's missus Smith in the library. If I if something happened to me, she would know what to do. Like, that kind of feeling. To feel like there are people in your life and in your orbit who understand and would have your back if necessary, but aren't necessarily running around constantly yelling like, hey. Save forests. It's not like that all the time. Right? It's just knowing that they're there quietly in the background. So as a parent, you have to try to set those people up in your kids' lives, or do you wait to see if they spring up organically, you think?
ErikaOh, that's a good question.
ScottBecause sometimes they do. Sometimes they spring up organically, and there they are, and then you have them. But for some people, like, how do you go initiate that conversation with somebody without it feeling stilted or weird moving forward?
ErikaSometimes those people might kind of present themselves as you're having conversations. They might say something like, oh, my my niece has type one, or, they might have a personal relationship to a chronic illness may or may not be type one. That's usually kind of a first indicator that they understand that things happen out of their out of their students' control. Yeah. Also, maybe, like, their rigidness around their instruction, around their teaching style. And and just kind of can I just kind of having that warmth, right, that they might get it? But I think you made a good point that it's not someone sometimes this can drive some of the people that I work with, like, the PE coach is like, hey. Like, screaming across the yard. You know? Timmy, you're low. Like, go to the nurse now. That's the opposite of what you were looking for.
ScottI've just I've heard too many stories from people that are like, oh, I thought their coach understood. I thought this one understood until something happened, and then you realize they're kinda nerd nicks and they didn't really get it or they didn't understand it as well as you thought they did or whatever. And then they become, like, the anti hero in the story. Like, the person you thought was gonna save the day ends up becoming, you know, the the reason for your your bigger problem. And so, I hope that these people pop up organically, but if they don't, I'd be very thoughtful about how you choose the people you approach to be this. Just because they are a thing in your life doesn't mean they're gonna be good at this job, I guess, or want it even or do, you know, or do well with it for you. It's a slippery slope. It's not an easy thing to figure out, you know, from my experiences and from my conversations.
ErikaThat that is it is because you you would hope that your child's teacher or you would hope that the school nurse would be this person. And that they might not they might be some years. They might not be every year. And that also, you know, the way you're responding as you're trying to find adults who stand by your child during hard times. It also I know we're talking about it very specifically and narrowly with diabetes, but it could be the other parts of their life. You know, maybe they're really supportive if your child has, you know, learning differences, and they are really attentive and attuned to that.
ScottI bring it up because I find that one of the places people push back with, like, mental health support in general or, honestly, a lot of times where you end up with a checklist of things to do for something is that they're nice to say, but, like, yeah. Yeah. Sure. I should go get my librarian or my kid's soccer coach to be nicer to him, but I you haven't met these people. They're idiots. Or I you know, like, who knows? He's not the one I can go to for this. Right? And so it's I I get scared that people hear that and then they go they take the next step and they go, that's not really viable for us. That won't work. And then they I don't want them to give up on it. I do think there's somebody out there who would be a great best friend who understands your diabetes or, you know, a mentor within the community who is the right person to be this. I just don't think it's as easy all the time as it could be. And there are some people that live in in cultures and and communities where they don't trust a soul outside of their their life. That can be tough too. You know, as much as I believe that your human connections are probably maybe a little more valuable face to face. There are plenty of times where you have to rely on the Internet to to bring together this group of people that you're desirous to find but cannot find in their in your own life. There's don't think there's anything wrong with that either.
ErikaYes. So that that is those are all very valid points because you could be listening to this and hearing, like, well, I've tried everyone at school, and no one is can fulfill this role. Yeah. And that is obviously very frustrating. It could be a neighbor in your community. We're gonna talk about more resources in the next episode. It could be someone within your your faith community, but just a mentor. There are, you know, diabetes mentor groups out there. Just somebody else besides the primary caregivers is really the point.
ScottYeah. No. Of course. It's because you don't want your you you don't wanna be walking out to the mound to tell your own kid that they're not throwing strikes. Like, sometimes that's just not the best way to get the point across. I just wanted to you know, as we're making space for things, I just there's plenty of people who are more worried about not getting shot walking home than finding a neighbor that could be valuable for them about their diabetes and, you know, and and everywhere in between on that too. So just because it's difficult doesn't mean it's not important, I guess, was my point. Like, don't just skip it if it's not easy to just point and go, that person could be helpful to me. That's all. Anyway, good luck.
ErikaNo. I I those are great points to, yeah, to spread the idea that it's it's not just school based. It's not just community based. It might be really hard to find somebody like this. Yeah. And that is valid. I think the in the line of, you know, the adults who stand by your child, I know this probably doesn't need to be said, but I'm gonna kinda say it around the the medical professionals, you know, being in a space where the doctor, the nurse, the nurse practitioner, whoever you're seeing isn't just focused on the numbers, but is attuned to your child's or to yourself if you're the adult listening to yourself as a person. My I've had a range of endos from grading my a one c's as a child to my current endo who the I probably have said this before, and this is a new and a fabulous experience. He's like, how are you feeling? How are you doing?
ErikaBefore he pulls up the graphs, before he pulls up the data. And and it's only probably a two, three, maybe five minute conversation, but that is such a a gift, right, that he's seeing me as a person and not just my diabetes and my numbers. And there are people out there who are who treat that way. So I just wanted to kind of point that out as well.
ScottLook. Listen. And there's a lot of value in hearing that from you specifically because you've had diabetes for, like, you know, wait, what, more than say more than thirty five years. So you know the value of being treated that way and and and the difference when you're not. Also, I, I'll give you a compliment right here. Somebody reached out to me recently and said, I like that Erica is sharing more of her real life in the episodes. So I I I actually got some feedback about that I wanted to tell you. So they said they feel like over over the episodes and the years that you seem like you feel more comfortable talking about yourself and your diabetes.
ErikaThat is a very an observant listener. Yes. Awesome. Well, I'm often yeah. It's it's an interesting experience as a as a therapist that you don't typically disclose much.
ScottYeah. There's a little bit of a blur here for you. Yeah. Erica's like, I got this I got this thing too. Yeah. I'm sorry. We gotta get back to your list.
ErikaSo let's keep moving. So, really, what does this do? Why is it why are we spending time about having, you know, having an adult who is supportive for your child or for yourself? It reminds them that there that there's safety outside even though that might, for yourself and your community, it might not feel safe outside your home. And I think it's important to validate that. But where you can and if you can reminding your child that there are people out there outside of your home who can be safe, and then that also kind of mitigates and protects against any kind of shame narrative or feeling like you're the burden living with with diabetes.
ScottYeah. All with the goal of giving you positive experiences around your diabetes that will help you be a a more fully formed happy adult one day.
Point 4: Being Part of a Group
ErikaYes. Yeah. Okay. Number four, being part of a group, which you just kind of alluded to that a community or a group can be, you know, yourself plus two. And some of these are are fairly obvious that we talk about, you know, participating in support groups, particularly for teens. Those are highly popular, participating, attending diabetes camps. And then separately, even if so the where yes. It's diabetes focused, those things, but being on a team, being in a choir or a dance group where diabetes management is integrated into their rhythm and their life, I know that can feel really scary for people. And and often, I do hear and and understandably so, after diagnosis, there's a pause from integrating some of those things into your child's life because you're trying to learn how to manage. But I do encourage if your child is is, you know, hungry for that to to reintegrate them back into those things where they feel like they're a part of a group, where they belong, where it's not just about their diabetes is so important.
ScottSome of the more interesting stories that I've people have shared with me, a lot of times people are diagnosed right before a planned trip or something, adults and kids, and they still do it. And then every one of them in hindsight is like, thank god I did that anyway. Because somebody tried to tell me, oh, maybe you shouldn't travel right after this or so an adult that told me recently about how they were they were literally trying to get insulin on the way to the airport because that's how close their their diagnosis was to, like, a, like, a long plane flight that they had. And if they look back and they're like, I'm so glad I did this. I did ask. If that was happening to your kid, would you want them to go? And she said, oh, no. I wouldn't. It was great because she validated that going anyway was super important. And she was going far, if I'm not mistaken, like, another country. And I said, what did you like, what did you think would happen if you, like, would you have gotten on the plane if you couldn't have got insulin? And she's like, probably, because I know I would have landed and people could have helped me still. Like, she was very, I could get it done when I get there. Great message. Great energy. I said, would you let your kid do the same thing? She goes, no. I don't think so.
ErikaI hear I hear similar stories. Yes. Going off to college, going abroad, going on trips. It's a tough decision trying to decide to be carry on even though we know it'll be more stressful. But then I wonder how significant making the choice to go becomes integrated into your narrative of, like, we can continue on with life.
ScottI go blinders because I realized a long time ago that if I put my fear on those kids, it's gonna be worse for them than whatever's gonna happen to them if they do something, it doesn't go well. Right? So but there are still times where, like, the pull inside of you is just, like, don't let them do that. That's a bad idea. Don't like, just say no to that. You know what I mean? I just, like, I shut my eyes, and I go, I know it'll be better for them to do it on their own than to not have it happen, and I'll just stop looking. And that way, maybe I won't feel like or at least maybe I won't open my mouth at the wrong time. You know? And that goes for, like, health stuff, dating, like, all that stuff. There's times you wanna be like, are you sure about that one? But you think, no. It's better to have the experience than for me to be the reason that you make a decision. Like, you need to make that decision. I can't make it for you. My experience is not just because you've lived through something and you know the right answer doesn't mean that giving them that answer is gonna get the outcome that you want. You're skipping them over an entire like, letting them have a lived experience in there that will be much more valuable to them than whatever the thing is you think you're gonna save them from, unless it's not. Like, you know, I mean, if the guy's got that serial killer stare, maybe grab your daughter and pull her back in the house. But, like, anyway you know what I mean? But moreover, it's just better for them to go find out he's a jerk and come back, you know, or or whatever this the thing, I think. Unless it all goes wrong. And then, of course, you'll second guess yourself for the rest of your life. So congrats. But I think, generally speaking, that's the way to go.
ErikaSo so being part of a group, obviously, it sometimes can cost money and time, and that is maybe not a luxury that that we all have all of the time. I used to see people on the the Juice Box Facebook group post like, hey. I live in this ZIP code. Anyone wanna meet up at such and such park on this date?
ScottYeah. I see people do that.
ErikaYeah. Yeah. I thought I just think that's really cool because it's it's very loose. It doesn't cost any money, I don't think, to show up at the park. And I just think that's a be a beautiful way to to feel connected without hopefully spending any money. A lot of these things do cost money. So the why why is this important? I think particularly getting your child back into, you know, whether it be school or sports or activities, it can reduce that feeling of why me? Even if their blood sugars are all over the board, and I know that that is super scary, I'm thinking about, like, their mental health component of, why can't I I used to love playing baseball. Why can't I do that anymore? That is such an important aspect to reduce that sense of loneliness and isolation or that why me? Why and then and then why can't I do this? Oh, it's because of my diabetes. So the belonging and identity and support is really important.
Point 5: Stable Employment for Caregivers
ErikaOkay. Should we do the last one? Number five.
ScottYeah.
ErikaHaving one caregiver at least one caregiver with stable employment. Now that one, I know, is is hard. Right? Like, some of some of us might think, well, it must be nice to have stable employment for one of us for between my partner and I, or maybe you are living you are a single caregiver to your children or child. And so I I hear that, and I wanna acknowledge that. I think it's also important to note, you know, what would be the benefit of that, not only financially, but emotionally.
ErikaSo having you know? And particularly if this employment has insurance. Now having predictable access to your insurance, we know it can be obviously very helpful with diabetes. But even if you have stable employment, so often that your employer might change insurance plans, and that is so frustrating and irritating and having to find new doctors and getting new prior auths and all of that. But with with having access to insurance with stable employment, you obviously have that kind of known rely you know, like, you can rely upon having access to your devices, your insulin. And in general, for you as the parent, this is all obvious. You know, reduces your own stress and financial stress, and your children can live in that and pick up on that if you are more stressed financially. But, basically, the the stability reduces that kind of background stress. When are we gonna get the devices? When are we gonna get insurance? And your child will feel more secure and safe. But, again, these are these are obvious, and this is hard to do perhaps all of the time to have one caregiver with stable employment, but this is what the research has shown.
ScottYeah. I just looked while you were talking, and it says that children living in families without secure parental employment in The US, about 18,400,000 children or around 25 to 31% lived in families in 2023 where no resident parent worked full time and year round. That means no parent worked thirty five plus hours per week for most of the year. That's a bigger number than I imagined it. Wow. Yeah. Yeah. That's it's a lot of people. Anyway, that was a bummer. But I yeah. Yeah. But I I appreciate you you saying it doesn't stop again, this doesn't stop the truth from being if one of the parents is gainfully employed and the kids can what? Expect that their pumps and CGMs and supplies will be available to them when they need, if there's not financial stress around their lives. Kids pick up on that. Like, if you can reduce those things, you have a better out you have a better chance. By the way, you could also do all these things right, and your kid could still be a show one day. I like the none of this or vice versa. By the way, that was the thing that really freaked me out. The first episode, you could have a ton of those aces on that list and not have adverse events from it in your adult life either, which is also good news. But yeah. I mean, I don't know if I cut you off, like, if you got to go over everything you wanted to in part five or not. But just because it's sad or unfair or whatever doesn't mean it's not true, I guess, is the is the point.
Summary: Relationships That Regulate
ErikaYeah. Yeah. So these these five things, you know, having affectionate steady caregivers, having a best friend, adults who stand by your child during hard times, being part of a a group, and having one caregiver with stable employment. These all are, you know, relationships that are significant that ultimately help regulate your your child's and and also your own, you know, nervous system.
ErikaAgain, under the umbrella of protective and compensatory experiences, these are things that will help buffer, mitigate, heal the experience of being exposed to to trauma or stress, in this case, diabetes, but obviously can be applied to other stressors that the ACE list recognizes and and ultimately helping your child feel safe and and that their nervous system is regulated even when they're exposed to hard things living with with diabetes.
ScottRight. Because if their nervous system has responses to these outside influences when they grow up and become an adult and those stressors happen, you're they're more likely or or they're likely at least to have those kinds of reactions that then create this problem moving forward for their children and generations to come if somebody doesn't break the circle at some point. Yes. Yeah. Yeah. Such a simple and yet complex idea at the same time. Right? And and I have to understand the physiology of it to even believe that it is true. Because I think there's most people there's plenty of people would say, like, look. Just be an adult. Don't do that. But I it just doesn't seem to me that that's the way things work. So I appreciate you doing this with me very much.
ErikaYeah. Yes. You're welcome.
Sponsor Messages and Closing
ScottI'd like to remind you again about the MiniMed seven eighty g automated insulin delivery system, which of course anticipates, adjusts, and corrects every five minutes 20 four seven. It works around the clock so you can focus on what matters. The Juice Box community knows the importance of using technology to simplify managing diabetes. To learn more about how you can spend less time and effort managing your diabetes, visit my link, medtronicdiabetes.com/juicebox. Having an easy to use and accurate blood glucose meter is just one click away. Contournext.com/juicebox. That's right. Today's episode is sponsored by the Kontoor Next Gen blood glucose meter.
ScottOkay. Well, here we are at the end of the episode. You're still with me? Thank you. I really do appreciate that. What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribe in your podcast app, go to YouTube and follow me or Instagram, TikTok. Oh, gosh. Here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page. You don't wanna miss please, do you not know about the private group?
ScottYou have to join the private group. As of this recording, it has 74,000 members. They're active talking about diabetes. Whatever you need to know, there's a conversation happening in there right now. And I'm there all the time. Tag me. I'll say hi. 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'm joined by Jenny Smith, who is a diabetes educator with over thirty five years of personal experience, and we break down complex concepts into simple, actionable tips.
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