#1648 Harper Valley PTA

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An ICU nurse mom recounts her child’s type 1 diabetes DKA diagnosis, winning school CGM monitoring, juggling celiac, and data-driven management with pump/CGM—practical advocacy and tactics parents can replicate.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Here we are back together again, friends for another episode of The Juicebox podcast.

Ashley 0:15
Good morning. My name is Ashley. My family and I are from Melbourne, and our daughter was diagnosed in April of last year, very unexpectedly, with no family history at all. If

Scott Benner 0:33
this is your first time listening to the Juicebox podcast, and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all. Look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management. Go to Juicebox podcast.com. Up in the menu and look for bold beginnings, the diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin while you're listening, please remember that nothing you hear on the Juicebox 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.

The 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 touched by type one.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 by type one.org I'm having an on body vibe alert. This episode of The Juicebox podcast is sponsored by ever since 365 the only one year where CGM that's one insertion and one CGM a year, one CGM one year, not every 10 or 14 days ever since CGM comm slash Juicebox, this episode of The Juicebox podcast is sponsored by the Omnipod five and at my link, omnipod.com/juicebox you can get yourself a free, what'd 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 Juicebox podcast.com.

Ashley 2:47
Good morning. My name is Ashley. My family and I are from Melbourne, and our daughter was diagnosed in April of last year, very unexpectedly, with no family history at all.

Scott Benner 3:02
Melbourne, Australia. Melbourne, Florida, Florida. I was like, You don't sound Australian at all. But this time of the day for recording, this is when the Australians record. Usually, I wish I was from Australia, do you? Yeah? That'd be cool. Cool accent. Yeah, to who, though probably not to you, you wouldn't even know. Nobody even knows what they sound like. Doesn't even matter, although, you know, it's one of people's biggest concerns when they come in the podcast. I'm worried about how my voice will sound, and I don't want people to think that my voice sounds like x, y, z. They always have like. I don't want to people to think my voice is too whiny or too nasally or something like that. And I always say the same thing. I'm like, no one listening knows what you sound like. Like, you're just a voice when that happens. Like, don't worry, nobody cares. So anyway, all right, so you're from Austin, you're from, let's say you're from Australia. It's much more exciting now. So you're from Florida, you have family. It sounds like, how many kids? Two kids, boy and a girl? Yeah, how old 11 and 711? And seven? You're married? Yes. How long you been married? Oh, gosh,

Speaker 1 4:11
13 years.

Scott Benner 4:13
Okay, seems fair. You say this diagnosis came out of nowhere.

Ashley 4:18
Yes, frustrating. Intro to our diagnosis. We had recently moved here to Melbourne, so we had to find a pediatrician. We chose a fairly large pediatric group. Started seeing this new pediatrician. Seemed fine at first, because you know, what do you go to the pediatrician for, like, if you're sick, and once a year? So not a big deal. My daughter got the flu last year in January, and she stayed sick for weeks. It just would not go away. And I kept taking her and taking her back to this pediatrician, and I felt like he just was not listening to me. The cough wouldn't go away. I was using the. Vacation that, you know, explicitly states on the box don't use for more than 14 days, and we've been using it for like, a month

Scott Benner 5:06
now, under the doctor's direction, you were using it for longer. Yeah? Okay, yeah. Every time

Ashley 5:11
I went, I would say, you know, we're still having to use this. We're still having to use, you know, Mucinex for a cough, it won't go away. And he's like, Okay, well, if it's working, just keep using it. But that's not really solving

Scott Benner 5:21
our problem. How long are people supposed to have the flu for?

Ashley 5:24
I mean, typically, your symptoms should only last a few days, right? I mean, you may not feel great for a week or so, but it shouldn't hang around in your body for that long.

Scott Benner 5:33
So at first it's just, Hey, she's been sick longer than I expected. I'll go back to the doctor. But then there's a third return to the doctor.

Ashley 5:42
Oh, in total, from January until April 23 which was our diagnosis, there were 13 pediatrician visits.

Scott Benner 5:52
Sorry, I'm not laughing you. I'm laughing at the pediatrician. It was

Ashley 5:55
actually unbelievable. So for background, I'm an ICU trauma nurse. Okay, so I have a little knowledge,

Scott Benner 6:03
a tiny bit you think, right?

Ashley 6:05
Yeah, and I know when to advocate for my patients. That's one of the things that I'm very proud of in my nursing career. But then add in that it's my child is a totally different aspect of advocating. So when I kept taking her the third or fourth visit, he was like, Well, I don't really know what you want from me. Like, I want you to be a doctor. I want you to do a chest X ray. I want you to send us to a pulmonologist. I want you to do allergy testing. Like, why is she still sick? This doesn't

Scott Benner 6:32
make sense. How old? I mean, I'm just going on a limb and say it was a guy, right?

Ashley 6:36
It was a male, yeah. He was probably late

Scott Benner 6:41
60s.

Ashley 6:42
No, I'd say 50s. I'm going to be nice and not go too deep into that part of

Scott Benner 6:47
it. Listen, you have a job where you're around doctors. Sometimes they age out of their knowledge base and they age out of their exuberance. That happens, right?

Ashley 6:58
Yeah, you know, I'm going to say I work with, I personally work with physicians who are in their late 60s, some 70s, and they are the most intelligent physicians I've ever met in my entire life. Okay, so do I think it's an age issue? No, not always, but I do hear what you're saying. I think it's more of just a respect and listening to your patient. That's the biggest thing that you have to do in medicine is listen to the patient, because they're the only ones who know what's going on.

Scott Benner 7:26
I'm making this up in my head, so you'll tell me if I'm way wrong, but I mean, I know other nurses right, and they'll say sometimes that doctors don't want to be told what to do by a nurse. Yes. Do you think that that could have transferred into your private life?

Ashley 7:41
So I don't ever tell anyone that I'm a nurse. Okay? Ever I don't. I don't think it's relevant for me coming in to see you for an appointment with my child.

Scott Benner 7:50
I agree, by the way, I think you run the risk of having them just make assumptions instead of doing their job, right?

Ashley 7:56
Yes, and we know that as nurses, we know that. So I typically don't tell anyone what I do for a living. I have actually lied a couple times and just say, Oh, I'm a stay at home mom, yeah. So they don't have, you know, because it's not relevant, and it shouldn't matter that I have education in the medical field for you to do what's right for your patient. It shouldn't make a difference.

Scott Benner 8:17
No, no, I was, I was wondering if, maybe, if there was ego, there was like, I don't need this, this ICU nurse telling me how to take care of this kid's cough. You know what I mean?

Ashley 8:26
I'm sure there was at the end, for sure, that day that I told him, You know, when he asked me what what I wanted, he ordered everything that I said. So I took my daughter to a pulmonologist, chest X ray, allergy testing, all of the things, and nobody could find anything wrong with her. So I went back again, and I'm like, you know, here we are. We're still having the same issues. She's very tired all the time. She still has this cough. She's not sleeping well, oh well, you know, it'll go away eventually. Just again, brushing

Scott Benner 9:01
me off. Really that simple months into it, yep, yeah. So this was gonna go away when she dies, Ashley, yeah,

Ashley 9:08
this was, like, in the February probably we're at now, she started peeing the bed. And so as a nurse, you know, I'm like, well, this isn't great. Did diabetes ever pop into my head in the beginning? No, because we don't have any family history. We don't have anyone in our extended family. We don't have anybody with type one diabetes. So no, that wasn't something that I was like, Oh, this is an issue. So then I I thought, maybe she has a UTI. So I took her back again. You know, Hey, she's peed in the bed a couple nights this week. Can you please see if she has a UTI? So we pee in a cup? Nope, nope, no, UTI. Okay. So what's the deal? Why or why is this now the new symptom? He told me,

Scott Benner 9:53
maybe she's stressed about being sick for three months.

Ashley 9:58
Can you just tell. Me what a six year old might be stressed about, like, is it the flavor popsicle that they're going to eat after dinner? Or I'm not understanding what could possibly be stressing out a six year old that they're peeing the bed in their sleep? Yeah, yeah. There's no reason for that. So that day, him and I did not have nice words for each other, and I asked for a new physician. We switched. That was right at the beginning of March. Of course, had to come back another day to establish with this new doctor, met her, kind of explained what was going on my concerns. But I have two kids, so of course, you know, there's not always just one thing going wrong in your life. There's multiple. So my son had stuff going on as well, and so we kind of, my daughter took the back seat. She seemed okay. You know, the symptoms kind of slowed down. We were dealing with other things. And then into March, she started with the peeing the bed again. And I went to pick her up from school one day, and she had a different outfit on. And I said, you know, Harper, why are you wearing a different outfit? And she said, because I had a potty accident at school today, and right then I knew something was terribly wrong. Yeah, she's almost seven. She doesn't pee her pants. This isn't right. So back, we went to the doctor, and we peed in a cup again, and nobody could figure out what was wrong. Did they ever poke her finger? No, did they ever send us for lab work, no,

Scott Benner 11:21
any simple, like, basic lab work would have turned up a glucose, right?

Ashley 11:25
Yeah, yeah. My thing now, looking back is, why don't you just poke a kid's finger? It literally takes three

Scott Benner 11:31
seconds, you know? You know why they don't, though, right? Because the first million aren't going to have diabetes, and then someone's going to say you're wasting money on this test. Yeah, that's crazy. Yeah, I take your point, like, but I think it's crazier that somebody could be sick for that long and just no one noticed. Well, just keep being told, like it's gonna go away. Well, you know, it's obviously not going away. Like, you know it's right, okay. You said she had the flu. Is this still the flu? It was

Ashley 11:57
long and it was exhausting and frustrating. So I had a grandfather, my favorite person in the entire planet, get very sick, and my daughter and I flew up to visit him in April. He has since passed. And the weekend we spent with him, she peed the bed. The whole entire weekend we were there four nights, and she peed the bed every single night we were there. And so I called my husband and I said, please make her an appointment for first thing, you know, Tuesday morning, we land. Monday evening, we're going to the doctor first thing in the morning. Like, this is crazy. And I that night, I told my husband, I think

Scott Benner 12:30
she has diabetes.

Ashley 12:32
And he's like, No, there's no way. It's that, you know, whatever.

Scott Benner 12:36
It's the flow.

Ashley 12:38
Yeah, it's probably still the flow. So he made the appointment. We flew home. My daughter was so sick, Scott on the plane, I bet I just looking back, I was so angry with myself. She ate gummies on the airplane. I don't let my kids have gummies. I'm a mean mom, so it was like a treat to have it on the airplane. And she drank apple juice, and I can't even imagine what her sugar must have been. And she was so sick when we landed, she wouldn't help do any like, she wouldn't help carry her bag. She wouldn't walk through the airport. It was like, Harper, come on. Like, we got to get moving. We have to get off the plane and, you know, get to the

Scott Benner 13:18
car. She's like, Mom, I'm dying. I can't Yes,

Ashley 13:21
literally, yeah. So we made it into the car. She fell asleep on the way home. My husband's like, what is going on? I'm like, I don't know. I don't know if she's motion sick, like, I don't know what's happening. So maybe we just go to the hospital. And he's like, okay, so we came home, she had peed herself in the car, you know, showered her off. She laid down. I went to go get a little bag pack to take her in, and she fell asleep. And I'm like, Okay, I don't know. Maybe she was motion sick. Now she's sleeping. Like, do you pick her up and still take her? Do you let her sleep? Obviously, looking back, I didn't make the right decision. So we slept through the night. The next morning, we woke up, took her to her appointment that was scheduled. I explained everything again that was happening and how frustrated I was, and they said, Can she pee in a cup? And can we poke her finger? And I said, she can pee anywhere you want. She's peeing everywhere.

Scott Benner 14:12
Yeah, no kidding. Watch this. Pee in a cup, and it's crazy.

Ashley 14:17
They poked her finger. The doctor came back in the room, and I knew immediately on her face, I will never forget it. And she said, I'm really sorry. Your daughter is diabetic, and she is in DKA, her ketones were four plus, and her sugar was 594 and we're going to call an ambulance. And I just lost it. I was devastated because I I felt like I knew for a while, but I didn't know.

Scott Benner 14:46
Well, that's the part I want to get back to, because it feels like you talked yourself out of it twice. Yeah. How does that happen? 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, and 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 Today's episode is sponsored by a long term CGM, it's going to help you to stay on top of your glucose readings the ever since 365 I'm talking, of course, about the world's first and only CGM that lasts for one year, one year, one CGM. Are you tired of those other CGM, the ones that give you all those problems that you didn't expect, knocking them off, false alerts not lasting as long as they're supposed to. If you're tired of those constant frustrations, use my link ever since cgm.com/juicebox, to learn more about the ever since 365 some of you may be able to experience the ever since 365 for as low as $199 for a full year. At my link, you'll find those details and can learn about eligibility ever since cgm.com/juicebox

Ashley 16:49
check it out. Looking back, there were things that I should have been like, oh my god, Ashley, you know, take her to hospital or take her somewhere else. But when you don't think that it's that diagnosis.

Scott Benner 17:03
I don't know. I really don't. Your brain keeps searching for other possibilities.

Ashley 17:09
Yeah, yeah, absolutely. I mean, it's your your baby, you know, I have two healthy kids. She's six. Like, there's no way it's something that bad,

Scott Benner 17:18
yeah, but it was, No, I get your point. And have you had illness through your life, or your husband has, or No,

Ashley 17:24
I mean, not anything crazy, you know, yes, we've both had covid. We've had the flu. You know, my son gets the flu almost every year.

Scott Benner 17:33
But nobody's like chronically ill. No, yeah, it's another thing that I think the people who aren't chronically ill just it doesn't pop into their head that there could be something, right? Be something wrong, you know what? I mean, not just, like, wrong for now, but wrong forever, right? Yeah, I don't think that's the thing that pops into people's minds.

Ashley 17:51
Usually, no, and it's just so, like, devastating. I mean, they, you know, I, I've met so many wonderful people, including you, through this podcast and through, you know, diabetes groups, we came home after the horrible time that we had figuring everything out and that ridiculous crash course they give you on, you know, oh, just keep her blood sugar around 180 and she'll be fine. And you come home and you're just lost, you know, and everyone's like, Oh, thank God you're a nurse. That literally means nothing, just so we're clear.

Scott Benner 18:21
I haven't said this in a while. I think the last time I said I got some anger online, but I'll say it again. Some of the most lost mothers and fathers who have been on this podcast or spoken to me privately have been nurses or doctors.

Ashley 18:36
Yes, yeah, because people think that we should just know, and I don't think that anyone realizes, you know, nursing school is two years of hell. Let's just be for real. It's awful, and it's all book work. You don't truly learn how to like care for a human being hands on. It's all book work. And the endocrine system when you study in nursing school is maybe a couple weeks, and diabetes is like, oh, there's type one and type two, next

Scott Benner 19:06
chapter, yeah, 20 minutes on Tuesday morning, right? Yeah. People think

Ashley 19:11
you just know, you know every subject of every illness ever right? And we don't like we specialize, and

Scott Benner 19:19
beyond that. It took me a while to figure this out through conversations with healthcare people too. But like beyond that, when you're in the hospital with type two diabetes or type one diabetes, they're not there trying to fix your a 1c and make it a five, right? You're there because you broke your foot. You're there because you had surgery on your gallbladder. You like, you know, you were there. They just don't want you to get low and pass out, and they don't want you to be too high for too long. They're not actually trying to manage your blood sugar that well and and they know nothing, right? Oh, please. I You only have to go the hospital a couple of times before you realize that no one understands what's happening, even that like you know when you're I mean, as. An example, like, when you're in there, because you have, I don't know, cancer, and because I went through this with my mom, and who, you know, was kind of borderline type too, and an endocrinologist comes through and like, well, you just, you know, give her the diabetes menu, and which, by the way, shockingly, has incredibly bad food for you on it. It's terrible. You get, like, pancakes every day for breakfast, yeah? But you just can't have, like, the the dessert or something like, it's always hilarious, right? Yeah. And, you know, and then they say, you know, how's your blood sugar been? They don't mean, hey, is your blood sugar been 105 all week? They mean, like, you haven't, like, passed out, right? Cuz, if you haven't passed out, then we're good, yeah. And which is fascinating, too, because healing is is really impeded by high blood sugars, absolutely yeah, but yet, in a hospital setting, what you're telling me, and what most people have told me, is there's not the expertise to put a person on another person and have them manage their blood sugar.

Ashley 20:55
Well, no, absolutely not. And we don't manage type one and type twos differently. No, totally different.

Scott Benner 21:01
It's crazy. I'll tell you, that'd be a great job for me, you and me

Ashley 21:05
both, because the frustration that surrounds it when I'm at work,

Scott Benner 21:09
yeah, well, I bet you now it feels a lot different than it did before, huh?

Ashley 21:13
It's horrible. It just frustrates me so badly, sure that these poor people don't get cared for correctly, you know? And then I come home and I tell my poor husband, who's not medical at all, if something ever happens to me, you know, if I'm ever not there and you have to do something with Harper, you have to know everything, because no one knows. Yeah, don't. Don't let them touch her pump. Don't let them do anything unless you know what's going on, because they have no idea what they're doing.

Scott Benner 21:44
I know you use the word advocating once already, but I've come to the conclusion that it's a bad word, because it's not really what you're doing. You don't mean like, I'm advocating for myself. What you're really doing is you're trying to force somebody to pay attention long enough and not do something wrong, yes, and that's what we do with patients. Yeah, right. So, you know, when someone says you have to advocate for yourself, like, be really clear what that means. It does. It doesn't just mean, like, Hey, pay attention. I'm over here. I want to be first. Like, that's, you know, I need my TV turned to another channel. Like, it's not on squeaky wheel, because that's kind of how I you know? Like, you would think about it a little bit like, and you know, Oh, they're so busy they don't have time for everybody. Have to advocate for yourself exactly what you told your husband. Like, you have to know what's supposed to happen.

Ashley 22:30
Yes, you have to know everything to keep yourself safe. Yeah, it's sad.

Scott Benner 22:35
That's not how people think of it, no. And that's why they end up sitting in the hospital, you know, something going wrong, and they don't say anything about it. Nothing comes up. My father went to the hospital for a he slipped and fell. He was in his 70s, and he had, you know, other issues, but he had a big cut on his leg, and he had type two diabetes, which, you know, and eventually, like, his blood sugars were 400 the whole time. He never got the hospital. He died there, and a week before that, I said to him, like that, you're never going to heal with your blood sugar this high. Like we have to talk to him about getting your blood sugar down

Ashley 23:08
right, because in the hospital, what we do for diabetics doesn't matter what type. We poke your finger and we cover you a sliding scale, yeah, but we don't care what you eat, and we don't cover your food, right, which makes absolutely no sense. You're literally putting them in a failed system and expecting them to do well, like, you know, working in it is more frustrating. I think that's the hardest part. Is when people say, Oh, she's so lucky. You're a nurse. It's almost harder because I'm a nurse, because I know how failed and flawed the system is.

Scott Benner 23:42
Yeah, until you realize that, like, what's that? There's that stat that one of those, one of those advocates for medical reform, runs around saying that I don't know, like, some large percentage of what's taught in medical school isn't even worth teaching anybody anymore. And you know that it should be revamped, but it doesn't get touched that way and and just look at yourself with diabetes, right like you and trying to help your daughter, it's overwhelming for you trying to help her. Now I'm gonna put it on a 25 year old who just got out of nursing school, like she's gotta understand it too. He's gotta understand it too. Like nobody. That's not how it works. Like this is all like your hair's on fire, trying not to burn the house down. That's how medicine seems to me. Hey, you didn't die. Big success. You're out of here. Now, the other nuts and bolts stuff, it's funny, is almost different. Like, I don't know, setting a broken leg, you know, getting a surgery to have your appendix removed, like, this stuff is very like a to b, and we know how to do some things a lot better than we know how to do other things absolutely. Yeah, so, but everything just feels like health care to you when you're sick and you're running into a hospital. Yeah. Did you think that about health care before your daughter had diabetes? Or was it not a way you thought about it?

Ashley 24:55
No, I know that our systems are flawed, and. And I know that we could do better. It wasn't diabetes, of course, at the forefront of my frustrations now it is, you know, not just for her, but for all of them. You know, just everyone that we've met through this process, they're all experiencing these these struggles than these unnecessary facts that they're told and like, where your kids a 1c should be and, oh, they'll be fine. No, they won't be fine with an A 1c of seven for 15 years. No, it's not right. And I don't know why we're taught that children it's okay if children run higher, or it's okay if children's a 1c is higher, it doesn't make sense to me. I don't get it, like, I just want her to live a normal life with normal numbers, like we do when

Scott Benner 25:52
Arden was really young. That was one of the ridiculous things that was said to me that like, pushed me into the direction I'm in now. It's okay if her blood sugar is high all the time because she's young. Yeah, she's a kid. It's fine. I said, I don't understand what that has to do with anything. Yeah, I can't tell you what I've learned from you. Then there's no follow up answer. They say, Oh, no, that doesn't make sense. Contextualize that for me. Why is it okay that she's young? And then they go, like, oh, okay, so it's just a thing you say, you know,

Ashley 26:27
yeah, like, Why? Why is it okay if they're young and their a 1c, is high, and they won't end up with kidney failure on dialysis. But when you're in her 20s and 30s, it's

Scott Benner 26:35
not okay. Last Friday, I interviewed a guy who actually been on, this was the second time he was on the first time to talk about how he, you know, he's in the how we series, and now he's back, 41 years old, to talk about his quadruple bypass, oh, my god, yeah, because he, you know, got diabetes back in the day, probably was, you know, regular and mph, and then back there for a little bit, and talked about how, like, his a 1c were like, you know, in the eights for, you know, probably 10 or 15 years. And now fast forward to, like, you know, he figured some stuff out, taking really great care of himself. And how does he explain it to me? Says he's a runner. He's the guy who finds himself to be very healthy, you know, he's a runner. And he said I started getting hiccups while he was running, or belching, belching while he was running. And he somehow, luckily figured out that it was when his heart rate rose that he started belching, which led him to a doctor to look at his heart. And, you know, after that surgery, the doctor told him it was like trying to your arteries were like cottage cheese when I was trying to sew them. Awesome, right? Yeah. And so we know that's what can happen, right? Why would you tell somebody, Hey, it's cool if you're a one c7, or eight, like, you know, or you know you're 180 is fine, like, that, stuff like, and the answer, really simply, is, is that there are more moving parts than we have people who understand what those parts yes are doing while they're moving and where they're going to end up while they're moving. And now you're expecting that person to understand this whole process in their mind. From today you and your six year old daughter to 40 years from now, how to direct you. They don't know how to direct you. They don't know how to even philosophize about what might happen one day and how to talk about it without scaring the hell out of you and like, so it all just turns into, like, it'll be okay. Like, awesome. We'll cross that bridge when we come to it, but that bridge is gonna have cottage cheese on the ground that I'm gonna fall through. So thanks a lot. Great. Anyway, cottage cheese bridge. That's how I'm going to think of it from now on. Anyway. So how long ago was this? Ashley, I'm sorry,

Ashley 28:49
my daughter was diagnosed, April 23 of 2024 Oh, wow. So we're a little over a year in most of what I know. And don't get me wrong, our endocrinologist is incredible. I adore him. He is not type one, so to me, that means something, and everything else I learned from you and your podcast, I have done experiments. You did an episode about a guy who wanted to eat Eminem, and it kept spiking him, and so he tried every day with different amounts of insulin with the same amount of Eminem, yeah, my daughter wants to eat cereal for breakfast. She's a kid, and I forgot to tell you, she was diagnosed with celiac three weeks after her type one diagnosis. Awesome. That was super fun. So we had to change our whole diet, you know. But anyways, she wants to eat cereal, and cereal is awful and spikes you, you know, to 300 every time you eat it. So I said, Well, if they can do it with M Ms, then I can do it with cereal. So I got on a measuring cup, and I measured her Cheerios every day and the milk every day, and I played with the insulin until I figured out how she could eat a bowl of cereal. And. Day under 150 and go to school and

Scott Benner 30:03
be fine. Wow. Good for you. And I

Ashley 30:07
tell everyone to join the podcast, because those are the kinds of things that like you're not taught.

Scott Benner 30:12
You know, nobody's gonna say that's either gonna say things like cereal makes your blood sugar high, huh? Yeah, don't eat cereal. Yeah, that's what they tell you. Either don't need cereal, or your blood sugar is going to be high, but it's okay. She's sick. It's fine.

Ashley 30:25
So let me tell you the the other super fun and frustrating challenge that we dealt with after this

Scott Benner 30:30
diagnosis, getting your child back to school.

Ashley 30:35
Okay, my kids go to public school. I obviously knew nothing about type one diabetes management in public schools. So we come home, you know, I kept my daughter home for a little over a week, probably, and I'm calling and I'm trying to get meetings set up with the principal and the counselor and the school nurse and all these people. Okay, so here in our county, our school nurses are employed through the Public Health Department. They're not employees of the school, okay? So basically, you have to work with both, you have to work with the school and you have to work with the Health Department. Okay, fine. So we go to our first meeting. I had bought a sugar pixel for the clinic. I had let Harper go back to school. We put the sugar pixel in the clinic. The school nurse thought that was like the coolest thing she'd ever seen in her whole life. Had it on her desk. She was doing an amazing job keeping an eye on the numbers. And when she started dropping, she would, you know, intervene. It was wonderful. It was working beautifully. So we go to this first meeting, and seemed like it was going well, until I mentioned the sugar pixel, and one of the nurses turned and said to me, oh no, we can't we can't see her blood sugar levels. We can't watch them. We're not allowed. And I said, What do you mean? Well, we've already been to court over this, and we're not allowed to follow her blood glucose levels. And I said, Oh, okay. Well, do you have those court documents that you can provide me? Well, no, well, do you have the type one diabetes management policy that you can provide me that states that you're not allowed to do that? Well, no, I said, then the device is staying in the clinic until you provide me with documentation that says otherwise. No, we can't do that. I said, you're going to do it until we are provided documentation. So she went into the clinic and threatened the school nurse's license if she continued to monitor my daughter's numbers. Who did? Well, call her the boss, public health department nurse. Boss told the school nurse, if she continued to watch my daughter's numbers, she could lose her nursing license. So of course, as a nurse, she's terrified, you know. So she unplugged the sugar pixel, wrapped up the cord and handed it back to me, and I think I was almost just as devastated in that moment as I was in the moment that the physician said to me, your daughter has diabetes. I don't think I've ever been so disappointed and so frustrated in the system,

Scott Benner 33:04
as I was in that moment. We

Ashley 33:06
already had her watching the numbers. There was nothing wrong. It wasn't affecting anyone else. What is the issue? So this turned into a year long battle, and I had to go to the public school board meetings that they do at the town hall monthly and sign up for a three minute appointment to speak in front of the entire school board. And I did it, and I pulled documents from every school county that follows a child's blood sugar in other states. Here locally, I called Tallahassee, I hired an attorney, I started working with a type one diabetes group that helped me and sent resources over, and we fought until it's finally approved. And it took a

Scott Benner 33:53
year. What was the reasoning that they wouldn't do it?

Ashley 33:56
They're not allowed. That's all. They kept saying. It's a liability. It's a liability, if we're watching her number and something happens, then it's our fault, I said, but it's a liability if my daughter is here in the building with you and something happens because you don't know what her number is, yeah,

Scott Benner 34:12
I'm helping you. I feel like this is the kind of answer that you get when stupidity is involved. Yes, yeah.

Ashley 34:19
So the meetings were endless. My husband couldn't sit through them anymore. He got really frustrated and walked out after a couple you know, they kept telling me that I was trying to reinvent the wheel. That was their favorite saying at every meeting. We just don't understand why you're trying to reinvent the wheel.

Scott Benner 34:36
You know? What they told me one time, Ashley, they said, We have a lot of kids in this school with diabetes, they're all alive.

Ashley 34:43
That's what they told me. We've never let anyone die. I said, Is that supposed

Scott Benner 34:47
to make me feel better? I said, I know one of those kids, she's wandering through this school with a 200 blood sugar the entire day. I'm not okay with that. I said, you're telling me that you're okay with that, and she's okay, and I'm like, she's not okay. Okay. You just can't see that she's not okay. Like, you don't know what you're talking about. That was, I think that was one of my argument points that got me moving. Got it moving. You can't just pretend it's okay. You can't just tell me it's okay when it's not

Ashley 35:15
but to them, it's okay because they don't know, you

Scott Benner 35:19
know, yeah, what I told them was, is that their actions will lead to my daughter having significant health concerns 20 years from now.

Ashley 35:28
So I think the bigger issue is that kind of what we touched on earlier with age, and I don't want to blame it on age, but the older population is used to managing type one

Scott Benner 35:43
with injections

Ashley 35:45
and not knowing what your sugar is, you know, we poke it in the morning and we'll poke it before lunch, and then that's it, yeah. And they, they kept saying, you know, well, no one's ever died, and we've taken care of diabetics for 40 years. And, you know, I think one of the ladies who we had to meet with her son. Was a type one, but it was 30 years ago when you were taking care of him as a child. Yeah, that was a type one.

Scott Benner 36:08
Interesting is now you're stuck in that situation where you're not just saying, I would like you to do this for my kid. You're telling that lady you didn't do a good job for your son. Yeah, yeah, yeah. So now it's all very personal coming out is that, I bet you it did.

Ashley 36:23
I tried to be respectful, and again, I didn't ever say I was a nurse. And so one of them told me that the school nurse couldn't sit and stare at my daughter's sugar pixel all day. And I said, I'm not asking her to stare at it. You can tape a piece of paper over it. It's going to alarm when she hits the numbers that I want it to alarm at.

Scott Benner 36:40
Yeah, I'm not asking look at it. She said, Well, you don't

Ashley 36:43
know what it's like to stare at monitors all day when you have all these people to take care of. I said, actually, that's literally what I do for a living, monitors and keep people alive. But if, if I can't stare at a monitor because I'm taking care of one patient and another monitor goes off. That's what tells us something's

Scott Benner 37:02
wrong. It's the same point I make about people's CGM all the time that go. I just stare at it. I said, I'm like, don't look at it till it beeps, right? Yeah, just set it in a place where you can react in time, and then that's it. Don't it's you don't need to stare at it. I'm not trying to make anybody out to, you know, in any certain way. But there's a person I know that's in the diabetes space, right, whose kid is older. You know, this person's older now, their kid was, you know, had diabetes a long time ago. Kids probably in their 30s now, or something like that. CGM came out, and this person banged on a lot of pots, telling people these CGMS are not necessary. I didn't know what my kids blood sugar was when they were on a sleepover. You don't need to know either. You know you're gonna make yourselves crazy, like they were on a crusade to tell people that they were doing this wrong and you were paying attention to stuff. You don't need to be paying attention to them. Blah, blah, blah, blah, blah. And I mean, they really went on and on and on, and all I could think while they were doing it was this person is so afraid to find out that there might be a better way to do this that they did something with their kid, even though there was wouldn't have been their fault. The technology didn't exist, right? They're so afraid to find out that there's a better health outcome for their child that they didn't get, that they don't want the rest of you to have it, just so they don't have to feel the pain of learning that. And isn't that awful, by the way, I don't think it's conscious. I just think it's I think it's kind of how people's minds work sometimes. And they went on for a while like that, telling anybody that would listen. And by the way, they had a bit of a platform at the time. You don't need the you don't need that thing. I raised the kid fine without a CGM. Blah, blah, blah, blah, blah. Now, by the way, the kid gets a CGM eventually. It's the greatest thing since sliced bread. Can't wait to tell everybody how great it is. Just pivoted on a dime. Just went the other way. I watched that from afar, and I was like, You're a piece of how crazy

Ashley 38:57
is this. And I felt like that was the people that I was sat in front of and supposed to talk to was these people that were like, Well, we did it this way, and my kids Fine. Are they? Though? Yeah, you don't remember telling them at one of the meetings like you guys are afraid, because you don't understand what I'm talking about with her CGM and with her insulin pump, and I had one of the ladies tell the entire room full of people while she was doing type one diabetes training at my daughter's school that if my daughter's blood sugar was ever low, just rip her pump off of her. And I stood up and I said, if you ever touch my child's insulin pump, we are going to have a very serious problem.

Scott Benner 39:42
Great. I don't know how you didn't just stand up and go, I give up. I'm gonna leave. We're gonna go, we're gonna give up. We're gonna go, I would move to an island and just live there like it's okay. I can't

Ashley 39:53
give up because of her and she saw me fighting, yeah, and I. Know. Now here we are a little over a year in, and we have met multiple diabetics here locally, and new ones are diagnosed every day, which is another topic that I find crazy. And every time we find out there's a new one, we make a care package of things that we wish we would have known about, and we go visit them, and I make sure to tell them what the school has to do for them, because they have to do it.

Scott Benner 40:25
Now there's a few 100 kids in New Jersey using the Arden's 504 plan. And trust me, the school was pissed about it for a while, I bet, but they were pissed because they had to do something. And by the way, they didn't really do much. They just had to, like they were all of a sudden they were responsible. Like all of this, like, my takeaway from my 504 experience was that that school was doing everything they could do not to be liable in case something happened to Arden, and if she were to have a health concern down the road that wasn't on them, they didn't give a that's what I got out of it. Because you know that like, you know, we've been helping kids with type one diabetes for all you had to say was, why don't we go find them all right now and see how they're doing? Yeah, yeah, because we'll what we're going to do is we're going to find a certain amount of them who thought, hey, you know, 200 is fine while I'm at school. And then they got out and they were like, well, 200 is fine. 220 is probably fine. You know, it was okay when I was in high school. It's probably okay. Now they're gonna live with an eight and a half a 1c their whole life, and then they're gonna have an actual problem with something they can't come back from. And right, you know what? And then if we trace that all backwards, we can trace it back to a meeting, just like the one we're in now, where you decided that it was okay for my kid not to be healthy for the rest of their life, because why? You didn't want the sugar pixel to be in the room, right? Because you don't know what you're talking about. Just say you don't know what you're talking about. We could re educate and start over right now, and everybody fan, you know, everything would be fantastic. You wouldn't just be out my kid. You'd be helping every other kid here, and every other kid who's on their way.

Ashley 41:57
The first time they told me that I was successful, one of the the lady that I referred to as the boss. She actually called me personally and thanked me. She said, I wish there were more mothers like you that advocated and fought for what's right. And she said, because you won. And now within our county, you know, if a parent requests that we follow their glucose, then we have to. And I said, Well, you know, that's good. And she said, Well, you don't sound that excited. I said, because I wasn't pushing for just this county. I'm pushing for the whole state. I call Tallahassee. Like, I don't, I'm not settling for just this county. Yeah, well,

Scott Benner 42:35
that's good on you, actually. But like, what's the other side of it? Like, did she not even agree with the thing she was fighting for because she was just doing her job. Or did you change her mind and show her a different side of this? Which do you think happened?

Ashley 42:47
I changed her mind, and I only know that in the end because of the phone call later, you know, we provided documentation. The ADA has released documentation on school guidelines, like they're they're they're federal. They're, you know, you you have to follow their glucose values if the parent or guardian request it, it's in writing. Yeah, so the schools technically can't fight it, but they were trying, you know, the school board ended up backing me. Thank God. They were like, Yeah, we agree. What's the issue? Well, then the issue was the health department wasn't agreeing with me, and it's their nurses, and they they didn't want to take on the liability of having their nurses monitor the sugar values, but you're responsible anyway.

Scott Benner 43:34
Actually, ignorance, stupidity, laziness. What's the biggest problem?

Ashley 43:40
Ignorance? Probably the just don't know. I Yeah, and I don't necessarily think that it's bad that people don't know. You know what I mean, you don't know, yeah, but you have to be open minded and like willing to learn. And it's not just these frustrating events with like schools or medical professionals, it's our friends, it's my family, it's, you know, like, if you're not going to take the time to just sit and try to understand what she's going through and how different her life is now, we don't need you around. I mean, it's, it's just

Scott Benner 44:18
really that simple. Sounds like you're gonna have a hearing with your aunt? Yeah? Well, yeah. I mean, it is just, I mean, I'm just gonna say it's very human, right? Like you get into a rhythm with something you don't want to learn anything new, and when you hear something different, it sounds wrong, because you feel like you already know the answer. I don't even think it's that they don't care to know. I think it's that they believe you're wrong. Probably, they probably think you misunderstand it. Maybe then that's the weird part. Like, why would you not make the instead of making the leap, like, oh, Ashley doesn't know what she's talking about, because I already have an opinion about this. Why would you not say, hey, you know what? Her kid just got diabetes. She might have a little more understanding of this, like, close up understanding. This than I do, but everybody just thinks they're right. I'm telling you that this is what keeps people alive and what stops people from learning at the same time. Like if you walked around constantly all day believing that you were wrong, it would probably turn into a mental illness. You have to believe in yourself, but then you get into one of these situations, and you don't have the ability to say to turn that off for a second. Go. Well, let me re evaluate what's happening here, right? Instead, you just go, No, I'm right. I have a thought. It's worked for me before. This is right. That makes you wrong. I'm on Team right. You're on Team wrong. Now we can fight to the death. Yeah, it's awesome, isn't it? And by the way, what you went through in that hearing is no different than talking to somebody online or watching your favorite political dissertation happen in front of you. It's all the same thing, like we all get stuck in what we think we're married to our thoughts. We really believe that they're they're infallible. So I know you did a great job. Bad for the kids, yeah, I tell you what, you probably had an easier time with the school than you're going to have with

Speaker 1 46:02
your family, yeah?

Scott Benner 46:04
Because at least the school was, like, bound by some rules and laws, your family just probably is, like, a she's always been a pain in the ass, and that's going to be the end, yep.

Ashley 46:14
And I'm okay with that, as long as I'm doing what Harper needs. You know what? I mean? It's not easy. It's not, this definitely isn't what I ever like envisioned, obviously, for my life or my child's life. I think we're doing pretty well. I her last a 1c was 6.0 so we got a little room still to make

Scott Benner 46:34
adjustments. Well, it sounds like you're doing great, but

Ashley 46:37
it's hard, you know? And this, this just isn't what you picture. And I don't know, the celiac, that's fun. That's a whole

Scott Benner 46:44
nother. Tell me a bit about that. Like, the celiac comes pretty soon afterwards. I ask people this all the time, but if you could get rid of one type one or celiac, which one would you get rid of?

Ashley 46:53
So, you know, we ask Harper that all the time we play the like, you know, what would you do game? And we give choices, and we've asked, What would you get rid of? Diabetes or celiac? And without fail, every time she says, diabetes, okay. And it honestly shocks me, because to me, celiac is harder for a kid. You know, she's left out at school, she's left out at church, she's left out at birthday parties. You know, we can't go to many restaurants because of all the stupid gluten free menus that people are eating for, like, a health fad, yeah, sure, you have a gluten free menu, but are you preparing it celiac safe, like in a kitchen that's not cross contaminated, and nobody's doing that?

Scott Benner 47:35
Yeah. Do you ever ask her why she answers that way? Try to dig in a

Ashley 47:39
little bit, like the shot. I don't like the shots. Mom, yeah.

Scott Benner 47:43
Oh, it's funny. So you, as an outsider, see the celiac is more trouble, but she sees the diabetes is more trouble.

Ashley 47:50
Yeah, you know, she says that, but I just, I feel like, if she could have a day without each I don't know that she would still pick diabetes because of always being left out, like, the amount of time she comes home from school in tears because they a kid had a birthday party, and the parent brought in cupcakes and she couldn't have one, you know, and those poor teachers that have no notice that cupcakes are coming into the classroom, so we get no notice to have time to, like, take her something that's safe. I don't, I don't, I don't know. I just feel like she would change her mind if she had a day to realize, like, oh, maybe this would be easier, because diabetes doesn't stop you from eating a cupcake.

Scott Benner 48:31
Yeah, I see your point. It really upsets her that much to be in that situation, the cupcake situation, for example,

Ashley 48:39
yes, yeah. It breaks her heart, because she's little, you know, when she's older, I don't think it's gonna matter, right? And she's eating healthier than, you know, any of us did, that's for sure, because she can't have all the crap.

Scott Benner 48:52
Yeah, no, no, no. I mean, in the end, like you said, paying attention to your health, having some of these issues sometimes does lead to people being, you know, I mean, you don't want these issues, but it does force you into taking, you know, better care of yourself a lot of the times.

Ashley 49:07
Yeah, yeah. And the celiac was just as shocking as the diabetes. No symptoms, no nothing. Our endo just ran the full like autoimmune panel, and her IGA came back, I don't know, over 500 and it's supposed to be like, less than 15. And we were like,

Scott Benner 49:25
have you looked through extended family for other autoimmune stuff and found anything? Yes.

Ashley 49:30
So after everything, of course, then people are like, oh yeah. Well, you know my brother's mom's cousin, you know? So yes, we've heard that there is some on my husband's side of the family, more thyroid, like Hashimotos. So yes, it's on that side. And of course, we didn't know anything about it until now, but I don't know what it would have done differently, either. Mm. You know what I mean, I still don't know if knowing that someone on your side of the family has Hashimotos would have triggered my brain to be like, Oh, I should get my kids checked for autoimmune diseases because maybe they're diabetic. I don't I don't know that. It would have made it

Scott Benner 50:17
different, right? And if somebody came up to you and said, hey, you know that boy you like, or you're thinking of marrying, he's got autoimmune on his side of the family. You'd be like, right? It'll be okay. Don't worry about it. Yeah. No, no. It's just nice to know now that you know. So you can, you know, look out for other things. Or, you know, I always, I used to think like or help other family members with their trouble, but nobody listens. So that doesn't matter. You know, to go to like, a an aunt or a sister in law or something, and be like, Hey. I mean, not for nothing, but I can see you have this problem. Like, they're not, that's not what it is. I'm like, Okay. I'm like, I hear I'm like, that's fine, yeah, I stay out of that stuff now, because nobody, if they come to me, I'll answer. But like, you know, I don't try to help people anymore, because, like, not in my personal life, like, because nobody will listen, right? I'm not a doctor or anything like that. I didn't go to medical school. I mean, I've told you guys before, like, I barely got out of high school. I do know a lot about this stuff, and, you know, like, they don't see you that way. It's the same thing as, like, your kids, like, you know, Arden. I brought this up recently. I was, Arden was having trouble with something, and I said, I, you know? I was like, hey, this, you know, whatever the answer was. And she goes, I don't think you know this. And I was like, like, all right, you're probably, like, only one of four people who thinks that. But that's fine, and it's just because I'm her dad, not because, of course, yeah, it's just what it is. I'm gonna just tell you that I am really old. Harper Valley PTA comes from a 1968 country song, so I guess a song that I probably heard from my parents listening to music, it was later turned into a movie and a short lived TV series. But listen to this. The song tells the tale of a widowed mother who gets a judgmental letter from her daughter's school parent teacher association criticizing her for being too unconventional and inappropriate in how she dresses and lives her life. In response, she goes to the PTA meeting and publicly calls out the hypocrisy of its members, pointing out their own scandals and flaws. And your daughter's name is Harper, and this is my best podcast title ever. I like it. Thank you. I'm really proud of myself. By the way,

Ashley 52:22
I like it, and I'm sure the school board, and who knows who else, has some lovely choice words about me.

Scott Benner 52:29
Oh, yeah, though they probably, oh, I'd love to be in a room with probably, like, this lady is a bitch,

Ashley 52:37
and I can be but like, if you would just do what's right for these poor kids, it wouldn't be an issue, yeah, but you

Scott Benner 52:42
know, if you would have just put your head down and capitulated, they would have just never thought of you again, and that would have been the end of

Ashley 52:48
it. We're actually moving out of Florida, and I've had a few people reach out to me and like, we just want to thank you for everything that you did for the schools, because now our child is safe like now every day we know that someone's watching her values at school or his values, and that means the most to me. Like I know that my daughter would have been okay because her nurse is wonderful. But like for all the others,

Scott Benner 53:13
that's what I wanted, I hope it lives on in a legacy, because I do wonder now that Arden has been going out of school for a while, if it, you know, it doesn't get forgotten. You know what? One or two school nurse changes or, you know the person in charge of, you know that kind of stuff changes hands once or twice, and you're right back where you started

Ashley 53:31
again. That would be terrible, and not surprise me in the

Scott Benner 53:34
least. No, no, of course not. We're gonna write it down. Oh, my goodness. You know, I don't know if you've ever heard me talk about, I mean, I saw this all coming, you know, and so I'm sure I was a huge pain in the ass to people, too. But, like, same thing, like, if you don't try to kill my daughter, I won't be a pain in the ass. Like, I'm not looking I'm not looking for a problem. They did let me set up a little system, but it wasn't easy. I went to the school six months at least before Arden was going to start kindergarten, and I was like, look, hey, you know, I like getting ahead of this stuff. That way we don't have to, like, rush, you know, like on day one or whatever, like, let's get this in place. And they literally laughed. I can still feel standing in the office being laughed at by a group of people who were like, he's here for next year. He's so nervous. Hahaha. We know what we're doing. There's other kids in this school that have diabetes, and I'm like, okay, and I did. I put my head down, I took him, and we come back for school, and then it hits you, you know, it hits you right away. Day one, they don't have a plan yet. She's still gonna be there. Of course, a problem couldn't happen on day one, right? So, like, now you just close your eyes and hope, you know, put a, put a cell phone on the kid like, you know, my five year olds walking around with an iPhone. That's not what I wanted. You know, they send her home with her 504 plan. That's literally a piece of paper with four bullet points on it that wouldn't I was, like, fascinated. I went back, took a meeting, got in the room with a guy, and he goes, What's the problem? I said, I. PHY you not to kill her with this 504 plan. I was like, There's no way you're going to keep her alive with this. I was like, she's five man. She's wearing an insulin pump. She doesn't know how to take care of herself. No one here understands it. Your one missed Bolus or one lunch is 20 minutes late away from her having a seizure. Do you know what to do if she has a seizure? You want her to have a seizure? You know, I put together a 504 plan and brought it back to him. They're like, this is we can't do this. And I was like, Sure you can. And then, you know, then you we got involved in the the horse trading and back and forth, and we got something set up in place, and it was not good still, but I at least got them to test her blood sugar, call me and let me make the decision about the insulin, so I took them out of the loop on the insulin. Yeah, and that worked really well, until the one day they didn't call me. Oh my gosh, that was it like she was on her way out to she was supposed to go there before recess, get her blood sugar checked before she went on a recess, and then she would come back in after recess, and they, I forget, they check her blood sugar again. And I use long time ago, she's 21 now, the meat of the story is that there was a little kid who had a, like a heart issue in the school, and he had some sort of a problem. He had to go to, like a treat, like a machine. They had to put him on, like for, I don't know exactly what like to help him. And so this all happens just a couple of minutes before they're supposed to call Art and have her come down and test her blood sugar before she goes out on recess. So they forgot about her. They forgot about her. And I had timers on my phone. So my timer goes off because my timer was set for after the phone call, like, so that if the phone call doesn't happen a couple minutes later, I'm reminded of it, because I was for my mental health, trying to teach myself not to stare at a clock too, right, right? So timer goes off, okay, and then you sit there for a second. My first thought was, like, well, be human. Like, maybe there's a bunch of kids in there that just haven't gotten like, what am I gonna call bug them, you know? And I waited a couple minutes, and I was like, All right, I'm calling. I called. I get put through to the nurse's office. The nurse picks up the phone, she decides the nurse's office said, hey, it's Scott. I'm calling about and she goes, Arden, and hangs up the phone. And I was like, Okay, so now I'm just sitting there in silence, and a few minutes go by and I get a phone call, and she's like, hi, and she explains all to me what happened at the other kid and we missed our and out on the recess I got her she was up on the monkey bars. I got her down. I'm gonna test her blood sugar right now. Chester blood sugar. Blood Sugar was 50, so my five year old was in the top of the monkey bars with a 50 blood sugar. And I made sure she was okay, got dressed, drove to the main building where the the superintendent worked out of and stood outside of his office till he saw me, and I recanted all that to him, and then at the end, I said, Listen, I just want you to understand that if you kill my daughter, I will spend the rest of my natural life making everyone here miserable. I said, I'm not a litigious person. I'll sue you all. I'll put my name on the front of this building. I'll make sure every one of you gets fired, and I'll have nothing else to do but to focus on this because of the horrible, horrible, disastrous sadness I'll be living in for the rest of my life, because you killed my daughter because you couldn't just follow these couple of rules that we wrote down, right? And he goes, what do you need me to do? And I said, there should be a somebody, just somebody, an aide, whose job it is to remember that it's 1015 because the nurses can't, they just prove that to you, and they shouldn't have to, by the way, right? And he's like, I can't afford an aide. I said, You got to ask yourself, how much does the aid cost versus how much is it going to cost for you to defend yourself against my lifetime of lawsuits, when you kill my daughter and she's dead, and then he hired an aide? Oh my gosh, that that man was later tragically killed in a car accident, and I feel terrible like all the time that he and I never we always had a contentious relationship, because

Ashley 59:10
you threatened him so many times. Well,

Scott Benner 59:13
just that one time, but he didn't let go of it. He hated me from there on out. And sometimes stuff would come up, and then they'd want to dig their heels in on something, but they'd look up and I was standing there, and they'd be like, Well, okay, we can't dig our heels in here, because this guy's gonna make a problem. To your point, my so big a long way of saying to your point in a room somewhere with the door closed, I'm just a fucking asshole to them, but I don't care, right? The tiniest little bit what they think of me. What I care about is our never had a problem like that at school ever again. 12 years she was fine

Ashley 59:46
well, and we don't want to come in like that. No, you know what I mean, come in and like, let's get this stuff in order and take care of my kid and call it a day. But actually, I

Scott Benner 59:56
was the bright, shiny, smiling guy coming in six months. It's early. Like, hey, listen, I don't really want to pressure you guys. Like, let's get this done now, so that we don't have to rush around and do it later. Like, this will give us plenty of time to go back and forth. Won't have to be contentious. No, they didn't want that. What they wanted. They wanted to ignore it. I couldn't let them do that and so, but that doesn't make me a toll. Other things make me a toll. Ashley, not that.

Ashley 1:00:18
Oh yeah. I have a list of things, a list that make me No, no, trust

Scott Benner 1:00:23
me, there's plenty of you got plenty of room to stand on if you want to make a point here and there, but like, not on this thing. And I was very kind and very It wasn't until they until that happened. And by the way, even in that moment, let me be honest. Now, all these years later, I wasn't that upset, but what I saw was, this is my one chance, my one chance to prove my point. Scare them straight, get this going in the right direction. So I walked in there, and I was a little extra dramatic, and I was a little extra boisterous, and, you know, and they said, you'll have to make an appointment. I was like, that's not gonna happen. I'm not leaving here, you know, was it performative a little bit, but it worked, yeah, but it worked. And in the end, she was, you know, she was 50 on the top of a monkey bar. She could have fallen right off there. And just what would they have said? Oh, sorry, we were taking care of the other kid? Yeah, I'll put my five year old in a wheelchair for the rest of her life, and I'll, I'm sure you're sorry. Is really going to fix it all up. This whole thing is hard enough without people setting up roadblocks all over the place. That's all.

Ashley 1:01:36
Can I tell you the call I got yesterday, Saturday, so my son is 11. He's my older no chronic health issues yet. I guess I should say I get a call from his best friend's mom, and I'm at work, and she's like, Hey, you have a minute? I'm like, sure. She just starts sobbing. And I'm like, okay, like, what have the boys done? They've gone on to a bad website or something, you know. Oh, is that

Scott Benner 1:01:59
where your mind went? I went right to cheating husband, but go ahead.

Ashley 1:02:02
No, her son, our little buddy that's here with my son all the time, is over in the hospital, diagnosed with type one.

Scott Benner 1:02:10
Oh my god, your kid's patient zero. She's giving it out to other kids.

Ashley 1:02:14
I know I'm like, It's contagion. Oh my gosh, that's terrible. He got it here.

Scott Benner 1:02:20
How old he's 11. Oh, that's terrible, yeah.

Ashley 1:02:25
And the education they were providing, of course, we drove over, you know, and spent the day with them yesterday, and took a little care package, and I sat and listened to them and give her the the spiel. And I just shook my head. And we left, and Harper said, Mommy, that was not right.

Scott Benner 1:02:40
Now we have a six year old who knows more than the diabetes educator in the hospital. Yep.

Ashley 1:02:45
So they're covering him with sliding scale, but no, no food coverage.

Scott Benner 1:02:49
Is it like, like a lot of situation, or is there, like, a strong honeymoon going on?

Ashley 1:02:54
I don't understand why or the reasoning behind any of it. And of course, the poor parents are like, so overwhelmed that you're trying to explain, like, hey, they should be covering for not only his finger poke, but like, the food that he's about to consume, you know? And they're like, What are you talking about? Because it's all new to

Scott Benner 1:03:12
them. Yeah, I went through this last year with a person I know privately, whose, you know, son was diagnosed, and every time I said something, I thought, Oh, she's not gonna believe that. And then it took months, and then one day she was like, I think I get that you really know what you're talking about. And I was like, okay, cool. Because, like, you said, like, they at the hospital, they said this, so yeah, oh my gosh, if they're asking for help, you're gonna be like, a, like, a support system for them in the beginning here.

Ashley 1:03:42
Oh, of course, yeah, anything that she needs, I already told her, you know, I don't want to overstep and I don't want to like knowledge overload you because there's a lot and I'm here if you need me. And I gave her our local indo phone number, which is who she's going to go see tomorrow, because I'm a little nervous with the people in Orlando that she's seeing, and I'm not sure what they're teaching. I mean, we're here for anyone who needs support.

Scott Benner 1:04:07
That's very nice of you. That's awesome. And they'll, she'll be like, she doesn't know yet, but she'll be lucky that, uh, that you're on her side, that's for sure. And her son too. The idea about, like, not wanting to overload people too, that's more than valid. It's really important, like, you have to be able to give them, like, real baseline stuff at first, because all the emotions and the lack of sleep and the guilt and everything else, it's like, swirling around, is it makes it hard to Yeah, it's why, the way the hospital does it is so hilarious to begin with, where they're just, like, they just blurt everything out at you, and then you just, You just, you walk out and you don't remember a damn thing.

Ashley 1:04:43
Yeah, it's like a three hour class. They made her sit through. Yeah, I'm like, she doesn't know what you said in the first sentence.

Scott Benner 1:04:51
Yeah, she has no idea. Like, I've been very open and told people before that while the nurse was in Martin's room, maybe the day after she. Got, oh, I forget, like, they got her out of DK, and then, like, she was sitting there, and she comes in to explain, like, this is Arden's insulin to carb ratio, and this has 30 carbs in it. So then you take this number and do this with that, and that's how you and I was, like, I just started crying, like, literally, like, not like, a little bit, like, I just, like, started talking, yeah, because not that I couldn't figure out the math, but in the moment I couldn't, no, you can't. I started like, oh, it's like, oh my god. Like, I'm a stay at home dad. Like I'm looking around the room, like, this is me, right? My wife's gonna go back to work and I'm gonna kill her, that's how it felt. And, you know, I'm gonna give her too much of this, or too little this, or blah, blah, blah. And I just like, my wife was like, she stepped up, and she's like, Hey, he's gonna need a minute. And you know, like, kind of sent the nurse out of the room. My wife's like, listen, just very simple math. You You know how to do this? Like, it's gonna be okay. And I'm like, I know. I just can't think. Like, I could too much, I couldn't put it all together.

Ashley 1:05:53
Yeah. And somehow, here we are, and they're alive,

Scott Benner 1:05:57
pretty much for the most part, if you get good information, it's not going to work out. You know, if you don't get good information, you get cottage cheese arteries.

Ashley 1:06:09
We don't want any of those.

Scott Benner 1:06:11
No, that's not what you want, especially when it's not necessary. And all the technology exists, and all the know how exists. But still, when you talk, I interviewed an endo the other day, like, last week, his episode will be up in a while. He's pretty good, you know, you ask him, like, well, how does all this happen? Nobody wants to say, like, it's just like, Man, this is it, man. It's the fragility of life, the limitations of humans. This is as good as it's gonna get. You think, if everybody just tried harder, this would get better. But that's not, that's not what this is about. Like, it's, it's just too complicated for the person that you intersect is not going to have all the information either, not going to know how to dole it out to you. Like, I mean, look at you. Just said, like, Don't overload them. Like, there's a thing they don't know. Like, instead they think, like, oh, we said it. They know. Like, what that is that how learning works. That's how you recall learning working. Honestly, it'd be like, if I put you in your car and like, you had you drive into a wall, then you jumped out, and you're like, you weren't dead. You're like, oh, dazed. You just been through an accident. I start yelling, like, you know, equations at you like, hey, what's the answer to this one. You're like, I just what, you know, I can't focus right now. I don't think there's a great answer.

Ashley 1:07:26
I can tell you one thing we need to do is stop handing out those damn black and white papers that say hyper and hypoglycemic signs and symptoms, and they're literally all the exact same. They're the same symptoms on both papers, and they're like, Here you go. Take these home, and this is how you'll know if something's wrong with your kid.

Scott Benner 1:07:47
That's so funny. You said that. And you're like, that's it. I did this thing when Arden was really young and I was out of my mind, like, you know, there's no CGM. So my trying to, like, I was trying to figure out, like, is there another way I can, like, be sure that she's okay. And I got into my head one day, like, maybe I can see it on her face. And so I would like digital cameras were a thing then. So every time I tested her blood sugar, I took a picture of her, and then I matched it with the blood sugars, and then I went back and took away the blood sugars and tried to figure out like by the picture. And it didn't matter like, because at one point they were like, you know, dark circles under her eyes, but that could be high or low. That's the next thing I thought, is, like, everything I'm looking for is there in both scenarios, yeah, yeah,

Ashley 1:08:34
yeah. And that's what they're teaching at the schools. They're like, here we're going to do diabetes education and teach all these you know, teachers that have no medical background what to look for in your kids. So if they're sweaty or shaky or irritable or are you serious right now,

Scott Benner 1:08:51
just call Yeah. Well, if you think something's wrong, call the nurse, because Please, yeah, just

Ashley 1:08:56
send her to the nurse, or call me, for the love of God, just call me, then

Scott Benner 1:09:01
the nurse will show up and tell you about all the rules that she has to follow and why she can't help.

Ashley 1:09:06
Let me go look at the black and white paper and see if any of these

Scott Benner 1:09:09
match. It is frustrating that that so many of the things on the one list are on

Ashley 1:09:13
the other list. Yes, it makes no sense to people who don't know what they're looking at.

Scott Benner 1:09:19
Well, you know what it gets you ready for. It gets you ready for a life of living with autoimmune issues, because they all pretty much bring up the same problems. So, yeah, so, you know, I don't want anymore. I'm tired all the time. Well, it could be this or this, or this, or this or this. I go awesome, but like,

Ashley 1:09:35
can we be capped out at two? Is diabetes and celiac?

Scott Benner 1:09:39
It seems like that would be fair, but I doesn't work that way for everybody. So I hope so for you, yeah, I hope. I hope so. I hope so for Harper, Ashley, you were awesome. This was terrific. Did I not ask you anything I should have? It was a pleasure. Cool. I thought so, dude, this is a good bitch session. I enjoyed this. This is good once in a while to do this. I have it on my list of things to do on the podcast in the future, one day where I'm just gonna let people come on and in short bursts, complain for like 10 minutes and then just make it a little episode of them just complaining. I think maybe that'll help other people get out their frustrations.

Ashley 1:10:15
That wasn't my intent to complain.

Scott Benner 1:10:20
No, no, the same issues. Yeah, they're important, and it's and it's a new diagnosis, and it's fresh in your head, and it's a listen. I mean, from the doctor to the school, that's more than somebody should have to deal with. I mean, your doctor not being able to figure out your kid's problem for three months is insane, and now you know, she could have died during that, yeah, yeah. She could have got decay, like, a lot, like, could have come on her a lot faster, and you might not have noticed it. And you know, you somebody was just on here the other day that somebody told them, like, just wait till tomorrow. And they didn't wait. And it turns out that not waiting probably saved the kids life. But, you know, the person on the phone was like, It's okay, you can come in tomorrow. So that crap happens all the time. Anyway. Thank you very much. I really appreciate this. Hold on one second for me. Okay.

Okay. This episode was sponsored by touched by type one. I want you to go find them on Facebook, Instagram, and give them a follow, and then head to touched by type one.org where you're going to learn all about their programs and resources for people with type one diabetes. This episode of The Juicebox podcast is sponsored by the Omnipod five and at my link, omnipod.com/juicebox you can get yourself a free, what'd 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 Juicebox podcast.com, are you tired of getting a rash from your CGM adhesive? Give the ever since 365 a try, ever since cgm.com/juicebox 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. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcasts and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card if you're living with type one diabetes. The after dark collection from the Juicebox podcast is the only place to hear the stories that no one else talks about, from drugs to depression, self harm, trauma, addiction and so much more. Go to Juicebox podcast.com up in the menu and click on after dark. There, you'll see a full list of all of the after dark episodes. If you're looking for community around type one diabetes, check out the Juicebox podcast. Private Facebook group Juicebox podcast, type one diabetes. But everybody is welcome. Type 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 Juicebox podcast. Type one diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording, wrong way recording.com.

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Leslie shares her teen’s type 1 diabetes diagnosis and DKA, rapid self-management with Dexcom G7 and Tandem t:slim Control-IQ, ADHD challenges, camp chaos, and parenting tactics that build independence.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox podcast.

Leslie 0:14
My name is Leslie, and I am the mother of three boys. My middle one has type one diabetes, and he was diagnosed about a year and a half ago.

Scott Benner 0:28
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. Juicebox podcast.com go up in the menu and click on series nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. Us. Med is sponsoring this episode of The Juicebox podcast, and we've been getting our diabetes supplies from us. Med, for years, you can as well us. Med, Comm, slash, Juicebox or call 888-721-1514, use the link or the number get your free benefits. Check and get started today with us. Med, this episode is sponsored by the tandem Moby system, which is powered by tandems, newest algorithm control iq plus technology. Tandem Moby has a predictive algorithm that helps prevent highs and lows, and is now available for ages two and up. Learn more and get started today at tandem diabetes.com/juicebox the episode you're about to enjoy was brought to you by Dexcom, the Dexcom g7 the same CGM that my daughter wears. You can learn more and get started today at my link, dexcom.com/juicebox,

Leslie 2:12
my name is Leslie, and I am the mother of three boys. My middle one has type one diabetes, and he was diagnosed about a year and a half ago, a little more over a year and a half ago, three boys. What are their ages? They are 15. I mean, I'm sorry, 14, almost 16 and 17.

Scott Benner 2:34
That was interesting. You did them completely out of order. You were like, 14, 1517, that's interesting. Wait, from bottom to top.

Leslie 2:44
Oh, well, that's how numbers work, yeah, but

Scott Benner 2:47
that's not how people usually do it, though. That's what's interesting. Usually, when you ask people to list their kids, they start at the oldest and go backwards. Oh, and that interesting.

Leslie 2:56
I always in age wise, I always list them in numerical order, but their names are actually

Scott Benner 3:04
alphabetical, like, in age order, they're alphabetical, like, it's like,

Leslie 3:08
backwards. So my oldest is Elijah, middle, Ephraim, youngest, Levi. So it works, and they're okay. I'm their mom. I can say their

Scott Benner 3:16
name. I'm just saying that it's, I feel like we're gonna learn something today while you're talking, because I don't know, I just your brain works differently. Also, I think my brain totally works differently. No, it definitely does. So I think this will be fun. I was interviewing somebody the other day, and they're like, can, you know, can I make some observations about you? And I was like, Yeah, sure. She goes, You say interesting a lot. And I was like, Oh, that's interesting. Do I? And now I just realized that you said that, and it's the first thing. I thought, I need a better synonym. Maybe we'll come up with that later. The child was diagno The child was diagnosed over a year and a half ago, type one, yes, any other autoimmune in the family or other health issues.

Leslie 3:57
So my mom has a plethora of autoimmune she's got lupus, fibromyalgia, rheumatoid arthritis, children syndrome, probably other things I don't remember. I think both of my sisters probably also have fibromyalgia, and there's other rheumatoid arthritis in the family. There's probably other autoimmune but no other type one that I'm aware of.

Scott Benner 4:22
And do you have anything specifically? No, no, like, was it your entire life that your mom was struggling with different things?

Leslie 4:30
She I was probably a freshman in high school, so 1415, when she admitted that she had these things, but I think she was struggling with them for a long time before she told me, Oh, okay, Are you the oldest? I am the baby. So I was always protected from all the things

Scott Benner 4:50
I see. So admitted to you or admitted to everybody that she has stuff going on.

Leslie 4:54
I'm not sure if she told other people first. I mean, I remember as a little kid, you know, her back hurt. But I don't remember and I and she was a headache, mom, she got headaches, but I don't remember her being like sick. And then I remember pretty distinctly when she told me that she had lupus. We were on our way to church on a Wednesday night, and she told me she had it, and gave me a brochure.

Scott Benner 5:18
So your mom told you on the way to church that she had lupus, and gave you a brochure about it so you could study up about it.

Leslie 5:25
Yes, I love my mom so much. Mom, I love you. If you ever listen to this, she doesn't like to talk about the things, so it'll kind of be in passing, and then we can circle back later.

Scott Benner 5:36
What genre of religion? Catholic? We're just Christians, just not Catholic. No. Oh, that was so interesting. If you have any questions, please consult this pamphlet.

Leslie 5:47
Yeah, I think you know it helps, so she doesn't have to explain it. I don't know.

Scott Benner 5:54
Maybe you know it's funny, right? Oh, it

Leslie 5:56
is funny. It is absolutely funny. But how old are you? So I am, but you're not supposed to ask

Scott Benner 6:04
a lady their age. Fine. How old's your mom? I'm 45 okay. Your mom's in her 70s. Yeah, okay, well, it's just a different generation. I just think that that was probably her being very open.

Leslie 6:16
That's what it is. Yeah, with our boys, we are totally open about everything. Like, we don't hide stuff from them. We have been had open conversations about sex and, you know, just everything, to the point where they're like, Mom, do we have to talk about it again? Terrible. I'm like, I just want it to not be a thing.

Scott Benner 6:36
Well, you're doing the opposite of what your mom did, right? Yeah, yeah. I would have loved to have been there the day. Your mom was like, Do you have any questions? Have any questions about your front butt, Leslie, or whatever ridiculous term? She did not didn't even go that far, no.

Leslie 6:52
But I had older sisters, and they helped me with all that stuff,

Scott Benner 6:55
yeah, but who helped them? Encyclopedia Britannica, I have no idea.

Leslie 7:02
The library. I don't know, it's hilarious, but no, I mean, my mom is great. She's just of the generation that just doesn't talk about the things I think.

Scott Benner 7:11
No, I understand. Okay, so that's going on in your background. What do you notice about your son that gets you to the doctor first?

Leslie 7:19
So, oh gosh, there's kind of okay. So the interesting thing about Ephraim, that is my little type one. So the interesting thing about him is that when he was pink two or three, he was still a cute, little pudgy thing, and I was noticing symptoms of what I thought were diabetes symptoms. He was peeing all the time. He would literally get out of his bed in the middle of the night and go, you know, like, hang on the bathroom sink and try to drink from the faucet because he was so thirsty. He fell asleep in random places. Frankie and so I took him to our fabulous pediatrician, and she said, Oh, that does not, you know, sound like normal behavior. Of course. They tested them for UTI and everything, and they did a finger poke, and it was fine. Actually, I don't even know what the number was. I don't remember what the number was or even asking, but they told me it was fine and but she's fabulous. And she said, But I trust you, and I trust your mama gut, and if you would like, we can give you the option of doing the three hour glucose tolerance test. And I said, Yes, I want to do that, because I want to just make sure he's fine, right, right? And so we did that, and he was fine.

Scott Benner 8:33
Oh, you might have you caught it so early that, like, so

Leslie 8:37
I don't think it ever worked, right?

Scott Benner 8:40
Well, what do you think maybe, like he was honey mooning so hard that you just happened to pick a day where you went to the doctor, where his everything was doing what it was supposed to do?

Leslie 8:50
I don't know, but this kid, also, he was one of those who was super sensitive to food, and when he was hangry, he was super duper hang like hangry, or than hangry. And so just, you know, looking back, there were a lot of, I guess, maybe some, some signs, and then so fast forward. And I just thought he is diagnosed with ADHD, as am I, and another brother and his dad probably would be so fast forward to, he's 14, and Efrem had been, it was, it was very strange lead up to his diagnosis, but he had been, he just was a freshman in high school. He had quit his hobby that he'd had for five years, just overnight, just like went from I want to do this professionally to I never want to do it again. Then I said, Okay, that's fine, but you need to pick a sport or a club or something like you can't just, you know, you need to do something. Yeah. So he chose wrestling. And high school wrestling is crazy. They're insane. And so he joined this wrestling team. And of course, the workouts are crazy pre season. And. And so he was doing all of that, and he was absolutely miserable. He hated it. He was so tired. He came home and I was exhausted. Of course, they're always watching their weight, and right when the season started, he just came to me one night, at bedtime, he was like, Mom, I really hate it. I'm miserable. I really just don't want to do this. I'm so tired, it's awful. And I said, that's fine, yeah, just pick something else if you're that miserable. The season hadn't really started, so that's fine. Yeah? We picked the wrong thing. That's all, yeah, right. And so at the same time, this is important, his brother, his older brother, had joined the wrestling team at high school, and then his younger brother had also joined wrestling in the middle school. So everybody's weighing themselves all the time. And so this is around October, end of October, around Halloween time, that Ephraim quits wrestling. So he's been doing all this crazy physical activity, and he quits wrestling. And then, you know, it's the holidays and Christmas and all this stuff. And Ephraim is just drinking everything he could drink. Everybody's weighing themselves. And, you know, the other two are trying to cut weight for their weight class, or, you know, whatever they're trying to do. So everybody's weighing themselves. Never. Everybody's talking about, Oh, I dropped a pound, or I dropped an ounce, whatever. And Ephraim is drinking. And I didn't really notice how much he was drinking and eating until he was home from school for Christmas. And we had these, like glass bottles in the fridge with filtered water that would just fill up from the reverse osmosis, and he would drink them, and I'm and they were mine, and I said, that's fine, just refill it. But he never refilled it his 14 year old boy. And you know, we're just, we're doing Christmas everybody's being lazy. Everybody's eating junk food, whatever, whatever his brother goes up to. They went up to Long Island, I think, for a wrestling tournament that they left on Christmas Day, and then they came, come home on the 29th and we go out to dinner as a family to celebrate. He did great. And so the younger ones at a friend's house, and so the four of us go, we go out to dinner, and we're sitting at our favorite diner, and Ephraim said, Ephraim, he got like, two, two sodas before the meal even came, and he wanted to have a third. And I was like, No, dude, you need to, like, slow down and, you know, just wait, have a glass of water or something. And then I and said, Well, maybe you've been drinking so much you've messed up your electrolytes. And, you know, because I think that's a thing I don't know,

Scott Benner 12:32
start having the craziest ideas. You're like, you know what I think probably happened, your electrolyte balances.

Leslie 12:37
Well, I say that. And then as I'm sitting there, I kind of rewind everything, and I play back the past month in my head. We're sitting at this diner, and said, Oh my gosh, Ephraim, I think you have diabetes. We're going to check your blood sugar when we get home, because his dad is a type two, and so we had a meter, okay? And so he eats. We eat, and it's, you know, he eats giant burger and fries. And we go home, get him some full sugar Gatorade, of course. And then we check his blood sugar, and it read over 600 please seek medical attention. That's what his meter says. Oh, and I was like, that's gotta be wrong. Did you wash your hands?

Scott Benner 13:20
The last thing anyone says to another person before they're diagnosed with type one diabetes, did you wash your hands? Yeah, yeah, yeah.

Leslie 13:27
Well, I mean, you know, Gatorade powder, you know, I don't know, so wash hands. Wait 15 minutes. Do it again. It says the same thing. And I was like, oh, you know. And in the meantime, I have gone to Dr Google, and he literally has every symptom. We did it a second time, says the same thing. I said, Ephraim, go brush your teeth. Go put on your sweatpants, because we're going to the hospital and you're not coming home today. Sure enough, mom was right. It was kind of funny, because in the meantime, my husband's meter is connected to, like, a teledoc

Scott Benner 13:59
thing. Yeah, the phones right there,

Leslie 14:01
and they're calling. They're like, Mr. Are Are you okay? You need to go to the emergency room. My son, we're on the way.

Scott Benner 14:10
It's like, the smoke alarm, or you have a company like, like, following it. They're like, you have to get out of the house. Yeah. So how long was this after the glucose tolerance test at the doctor's office?

Leslie 14:20
11 years. Wait, really? Yeah, holy.

Scott Benner 14:24
Wait, no, no, no. Wait a minute. How old's the kid?

Leslie 14:27
He was a toddler when he had the glucose tolerance test. No kidding, I

Scott Benner 14:30
didn't understand that aspect of it. He

Leslie 14:33
was a cute little baby. Oh my god, seven years later, I just don't think it. I think it. I don't think it ever worked. Right?

Scott Benner 14:39
You've been sitting around sneaky, waiting to be right about this for 11 years. Yeah, yeah,

Leslie 14:43
absolutely. Look at you. And it's funny when, when he so he had his Well, check a couple weeks after he looks like his regular check up after he was diagnosed. And we go in our pediatricians, fabulous. And I told her, I said I told you, I was right. She's like, I don't

Scott Benner 14:56
even remember what you're talking about. Like, well, listen, a decade ago, amazing.

Leslie 14:59
Oh, okay. She was fabulous. She's the best. Did she offer

Scott Benner 15:02
anything back on that when you were like, look, remember 11 years ago when I told you I think this kid had diabetes, and now today he actually has it,

Leslie 15:09
she said you were right. She said, It is, it is strange. And you know, things like this happen.

Scott Benner 15:15
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Leslie 17:56
I don't know like,

Scott Benner 17:58
I just think it went off and on. Like, I think maybe off and on, okay, because, like, using as an example, like his behavior, or like being hangry, was that constant through his life, or just, like, periodic

Leslie 18:10
there were definitely times when it was better than others. When he was more physically active, it was better, and I think that helped control blood sugar, but I don't know. I mean, you know, we don't know.

Scott Benner 18:22
I'm not making a pronouncement about I just think it's, I gotta almost say interesting. I'm just gonna say it anyway. Like, I think it's interesting to talk about. Yeah, to hear about it. Okay, so is this like, the chillest kid in the world. You're like, hey, go put some sweatpants on. You have diabetes. We got ahead and like, he's just like, all right, whatever.

Leslie 18:39
He really felt like crap. Oh, I am so thankful that I did not put him to bed that night. Oh, you wonder, yeah, for sure. Yeah, I am so thankful that I did not put him to bed. And I'm so thankful my family listens to me.

Scott Benner 18:51
You're lucky. You had a meter at the house. Honestly. Yeah, if we didn't

Leslie 18:55
have one, I probably would have told my husband to go to his mom's house because she has one. So, yeah, I would, I would have pushed that.

Scott Benner 19:03
How did he handle by the way, I think I know one Ephraim in my it's Efren symbols Jr. There's no other one.

Leslie 19:09
There's an actor. And it's funny, he said there's a Canadian actor, and his name is Ephraim Ellis. He's Canadian. I don't know if that's last name is Ellis. And then my son's middle name is Ellis, but he's totally not named after him.

Scott Benner 19:21
Sure, whatever, he's not. He's named after my dad. He's your dad named e no, Ellis.

Leslie 19:26
His middle name is Ellis. Yeah, gotcha. Gotcha. So, okay, so

Scott Benner 19:29
how does, how does Ephraim handle being diagnosed? What's the first couple weeks? Like he

Leslie 19:33
was really chill. It's funny, because, you know, when we were checking his blood sugar at home, it took my husband and I to, like, hold him down and prick his finger. He did not want to have anything to do with that. He was a kid who was really bad about needles and such. And it was a Friday night, and we came home on New Year's Day, which was a Monday, and by the time we got home, he was giving all of his own injections and doing all of his everything. Hmm. So he just, I guess he just figured he had to do it, and that was

Scott Benner 20:05
that, that's it. You don't know anything about diabetes going into it. So they give you good tools. Do you have to ask for them? If you have to ask, where'd you learn about it? Like, how all that?

Leslie 20:14
Oh, here's what happened. Our hospital experience was really fabulous. We are in a small coastal town, less than 10,000 people here, and so there's no Children's Hospital or anything. But when we got to the emergency department at our hospital, I knew one of the physicians, the one who actually triaged him, he knew her daughter from his previous hobby.

Scott Benner 20:40
You keep saying, previous hobby? What was he got? Gun runner?

Leslie 20:43
What? Efrem, I love you so much. He was a competitive dancer.

Scott Benner 20:47
Oh, I see what you're trying to save him. I got you. Yeah, he

Leslie 20:51
was very good. Wait, like, ballroom or, like, ballet, ballet.

Scott Benner 20:55
Oh, no kidding. Oh, good for him. But he burned out on that. He's like, That's enough of that.

Leslie 20:59
It is really hard for boys in dance, because there's they don't have, like the camaraderie that the girls have, and so it's kind of a fight the whole time to even have a dressing room.

Scott Benner 21:12
Sometimes you feel like you're like an afterthought at the events.

Leslie 21:16
Oh yeah, totally. And then when you do win an award, oftentimes they say, Oh, well, you just got it, because you're a boy, so it was a tough thing. And then you get people in your other life who you know, want to say this and that about a male dancer. And I think he

Scott Benner 21:32
just a lot from different angles, but he enjoyed the dancing.

Leslie 21:35
Yeah, yeah, he did, yeah. He's very naturally gifted.

Scott Benner 21:40
Okay, yeah. I mean, anyway, you just, you were so avoiding it on purpose. I was like, now I gotta find out what he's talking

Leslie 21:46
about. That's fine. I don't think any of his friends listen to this podcast, so it'll be

Scott Benner 21:49
fine. Listen, I make a podcast. It's not exactly the most masculine thing you've ever heard of in your life. Oh, cool, yeah. And I gotta, I gotta tell people all the time, like, what are you doing? Oh, my God, here. I make a podcast. And again, if you're telling somebody over 40, they're like, Oh, I didn't know you. Like, lived in your parents basement. Still, like, so it's, you know, it's not a ton of fun, but so I understand what you're saying, but Okay, I'm sorry. Met the person bump into the

Leslie 22:11
hospital experience was fabulous. Yeah, we knew the physician who was, who was triaging. I told her what was going on, and everybody's eyes just, you know, get really big. Because I said, well, our meter said it was over 600 and so they got their meter, and it also said the same thing, we also didn't have to wait. There were people in the waiting room, but because I told them what, I told them, we didn't wait. So apparently, our hospital does a decent job triaging. Okay? They pricked his finger. Everybody's eyes get big. They took us directly back to her room. We don't have a I guess there's a pediatrics unit at our hospital. I don't know what they do, maybe like appendixes, I don't know, but nothing big. He could not be treated there. They did get it started. So they contacted the closest Children's Hospital and contacted the endocrinologist on call, and she gave them the order. So they did start the insulin and everything at our hospital. So they got him, you know, hooked up to everything, you know, did all the blood work, got him hooked up to everything, insulin, potassium, whatever, fluids. And I'm sitting there, and I'm just my husband. I are pretty chill. I'm not a chill person, but I was chill about this. I don't know, I guess, because I knew, and he would come in and, you know, he told me that, you know, he most likely had type one diabetes. Of course, they couldn't tell us until antibody tests came back, like, for sure, for sure, but, and he was in DKA, and he kind of explained to me what that was and what was going to happen. And I was just like, okay, like, can we take him to the next hospital? Yeah? And they said, No, absolutely not. I said, Okay. I said, How is he gonna get there? And they said, well, the helicopter is gonna come and get him. And I said, okay, they thought he was in

Scott Benner 23:53
that much trouble, yeah?

Leslie 23:55
And it's the only, I mean, I don't think there was an ambulance to available, and it was just faster to get the helicopter.

Scott Benner 24:04
Did that seem like a, like an escalation of the situation, or do you think that it was just the smartest thing to do in that

Leslie 24:10
spot? Like, just the smartest thing to do? I mean, we just, it's a small hospital, and so they use the helicopters.

Scott Benner 24:18
Was your understanding of what was going on? Like, let me ask this a different way. Like, I'm trying to figure out if, like, you're like, okay, my kid has diabetes. I've kind of thought that for 10 years. It's been in the back of my mind a little bit. So, like, I'm not super surprised. You know, we're gonna go to the hospital, we're gonna do the thing. Whoa, a helicopter. Like, do you know what I mean, like, is, was there an escalation or in your mind, or not, really,

Leslie 24:41
yeah. So I did get, you know, I mean, I had, like, the mommy tears a little bit, but I wasn't, I was not freaking out. Okay, I sent my husband home because we were gonna have to drive, and the hospital is about almost two hours away, you know, because they told me that I couldn't ride with him, and I really, I didn't like that part. I wanted to be with him, sure. Yeah. So I said, Well, you go home and get some sleep, because you're going to have to drive, and I'll just stay here with him. And because they assured me that the transport people would tell them when they left the other hospital to come and get him, well, they didn't. Mostly they were just there. So I get a like, a nurse comes in eventually, yeah. And of course, they're checking vitals, and, you know, poor guy, you know, he's trying to get some sleep. And they come in, they're like, the helicopter is about 10 minutes away.

Scott Benner 25:25
Now we've got our quick turn. Now suddenly, like, here we go, right,

Leslie 25:29
you know, I call my husband, and I said, Come

Scott Benner 25:32
on, let's go stop sleeping. That part's over now. Yeah, you're

Leslie 25:36
done sleeping. He came, and then we drove there, and of course, Ephraim had gotten there, like, a full hour before we did. Yeah, the helicopter crew was, like, they were super cool. They were the coolest, like, big uncle dudes, I don't know, like, if you could think of a cool Big Uncle, that is what these guys were.

Scott Benner 25:52
Like, you didn't feel like he was alone because you were worried about him being alone for that hour. But you didn't like you felt like they stepped up in that spot.

Leslie 25:59
Oh, absolutely. Because so there were three of them, you like, a pilot, a co pilot, and a nurse, or medic or whatever, and they were all these big, burly, you know, mustached dudes. So they were, they were super cool. Ephraim thought they were cool. He's wanted to be like a paramedic his entire life, so he did think that part was cool. Yeah, that's so he was in pick you for about 24 hours, and then he got bumped down to a room, and then we did all the education and everything.

Scott Benner 26:26
So you feel like he translated or transferred from like, oh my gosh, you have to pin me down if you want to check my blood sugar, to taking care of himself pretty effortlessly.

Leslie 26:34
Yeah, really, when we got home from the hospital, we were doing the long acting injection. He wanted us to do that one, but he could have if he if he needed to, and then he was doing everything else.

Scott Benner 26:46
So in your note, you talk about wanting, like, talking about not being afraid. So he wasn't afraid, like, it was it you that was afraid.

Leslie 26:53
I don't I, gosh, I wrote that note so long ago, I don't remember what I meant. Yep, you wrote of insulin.

Scott Benner 26:59
You said, I want to talk about the diagnosis of a teen ADHD understanding tandem and not being afraid,

Leslie 27:05
not being afraid. Oh, babies not being afraid of insulin. So in our education, of course, they taught us about lows and what to do. But they did not, I don't know if other educators just drill it into your head that you're gonna go low and like, heal over. They did not do that for us. I mean, at all, they taught us how to treat a low. You know, of course, they talked to us about glucagon and maximi, but did it seem

Scott Benner 27:30
like it couldn't possibly happen? Like, that was my takeaway. Like, you know, all that training about, like, this is what glucagon is for, and blah, blah, but then they would follow it up by going, don't worry, that's not gonna happen. No, they

Leslie 27:40
didn't really do that either. It's just, I don't know, maybe I have kind of a logical brain, so I'm like, Well, we have the tools. Oh, so if something happens, we'll do the

Scott Benner 27:51
thing. It'll just work out the way they said, Yeah, yeah. Good luck with that.

Leslie 27:56
Yeah. I know, right. I'm very thankful that he's not afraid of using his insulin, using his insulin. In fact, sometimes I have to be like, dude, if you're gonna crush the high, you have to catch the low.

Scott Benner 28:09
Can't do the first part, not the second part. Attention. Gotcha. Well, what gear does he use today? Is it been what he's always done? Or did they send him home with needles or pens or

Leslie 28:19
so when we came home, we had sim glee because our insurance didn't cover Lantis and Novolog pens. So he was diagnosed on December 29 and on April 29 he got his T slim. He chose it. I thought for sure he would want to do Omnipod, but he did not, and I didn't try to push him one way, way or the other.

Scott Benner 28:45
How did Ephraim choose tandem over another pump? Did he tell you what he was considering when he when he came to his decisions? Let's talk about the tandem Moby insulin pump from today's sponsor, tandem diabetes care, their newest algorithm control iq plus technology and the new tandem Moby pump offer you unique opportunities to have better control. It's the only system with auto Bolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options. Tandem Moby gives you more discretion, freedom and options for how to manage your diabetes. This is their best algorithm ever, and they'd like you to check it out at tandem diabetes.com/juicebox when you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's going to help you learn about tandems, tiny pump that's big on control tandem diabetes.com/juicebox the tandem Moby system, is available for people ages two and up who want an automated delivery system to help them sleep better, wake up in range and address high blood sugars with auto. Bolus.

Leslie 30:00
So we did do at one of his endocrinology appointments, the trainer came in, and she presented a few different ones to him, and she was a tandem person, and the Moby had just come out, so she didn't have one, and she hadn't had one yet, but she was going to try it. He at that point, he had already was kind of leaning towards the tandem, I think, because of the algorithm and because you can create your different segments during the day.

Scott Benner 30:28
Okay, how does he know about that? I don't know. Maybe I sent him something. Did you hand him a pamphlet one day? I don't know. Maybe you're like, you're gonna have to pick an insulin pump too. Here's a pamphlet you could educate yourself when we're not together. I don't want to talk

Leslie 30:43
about it. He isn't. No, I want to talk about it. He does not. He is a very independent young man. Well, he must

Scott Benner 30:49
be if he went out and learned all the stuff about, like, how the algorithm works and everything.

Leslie 30:53
So she presented it to him, and, you know, we were asking her questions, and she said one of the things she liked is because is that you can Pre-Bolus foot on the floor or Don phenomenon, whatever, whichever one, because you can set up your segment, you know, to increase your basal at that time. And she really liked that, and that you can have several different profiles for different things.

Scott Benner 31:16
Yeah. So the the educator liked that the tandem offers you. I think of the tandem algorithm, kind of offering, like a, it's like a, I don't know, like a little bit of one, a little bit of the other. Like, you have the A I D aspect to it, but it does allow you to say, like, right here, I want you to have, I don't know, more basal than you do in this segment, that kind of thing. And that part was attractive to her, probably then translated to him once she explained it to him,

Leslie 31:43
yes, and then the other thing for him was that he didn't want something as big as the Omnipod stuck to him.

Scott Benner 31:52
That's interesting. I think of that Omnipod is so small, yeah, but he I don't know, listen, no matter what you buy while you're listening. I want you to know this, tandem diabetes.com/juicebox, omnipod.com/juicebox. Medtronic diabetes.com/juice. Just use the links. The links in the show notes, just click on those. I don't care what pump you get. I don't care why you think one of them is better than the other or for you, just as long as you go through my link, when you do it, it doesn't matter to me. Let's say I had to keep this train rolling. You know what? I mean? Yeah, okay, yeah. But in all honesty, I really do think whatever's best for you is perfect. Like it doesn't matter if someone prefers tubes or tubelessness over something else. In the end, it's what's going to work best for you. You got to be the one that's comfortable with it. So good for him for going out and figuring going out and figuring out what he

Leslie 32:44
thought that was he did in the the tube has been a non issue in the group. I am always the one who is when people are looking at pumps. I'm always the one saying, don't let the tube deter deter you. Yeah, you know, I see more people talking about knocking an Omnipod off than I see them saying they rip their sight out. So, I mean, it's probably fairly even, yeah, I

Scott Benner 33:05
think it's in general. Like, you're gonna find some people who love something to a fault. You're gonna have you find people who had one problem and they can't stop complaining about it. You know, like, there's always somebody who's like, this, Dexcom never makes it 10 days. How are they gonna ever make it 14 days? I'm walking around here, like, trying to talk art into like, I'm like, the thing's gonna expire in five seconds. Will you take it off, please? I know we have a 12 hour grace period. She's like, rides it right to the end, and it works great. Like, why does that work that way for some person and not the other? I don't know. Also, I want to apologize. I forgot to say twist.com/juicebox that's twist with two eyes.com/juicebox. I forgot that they were a newer sponsor. And by the way, I love that idea, that twist pump, because it's got that loop algorithm in it. And I think that's an attractive idea. So all different kinds of options.

Leslie 33:52
So the twist is really interesting. Like, that's very appealing to me. Ephraim has said that he is kind of interested in the Omnipod. Now, of course, you know we've got that four year thing with tandem, but I think maybe we could still try Omnipod because it's pharmacy.

Scott Benner 34:09
Yeah, I also think they have a free trial that you could figure out more about at my link. I just want to say all out. But in the end, again, I think it's like the Joking aside about, like, the fact that I think I have four pump companies that buy ads on the podcast, like, there is something out there that'll be good for you, and you need to go look at what those things are and what they bring and what your needs are, and try it. And, like, try something and you don't love it. If you can try something else, try something else. Like, in the end, you're going to be wearing this thing every day for a really long time. I'd like you to have whatever the best fit is for you. That's, yeah, just makes sense to me. So anyway, yeah, I mean, and that goes for the CGM stuff too. If it's libre, if it's Dexcom, I think now there's Medtronic is going to have a new CGM that works with just their system that Abbott's making. You know, there's a lot of options out there. Go figure. Out what they are anyway. So he is using a pump, and you're saying he's taking care of himself. Are you not that involved in day to day decisions? And how did he pick it up so quickly?

Leslie 35:10
I am kind of the master settings decision maker at this point, but I am actively working toward kind of guiding him when it when a decision needs to like, when something needs to change, you know, it'll be something like, Okay, we've gone high after this meal, you know, for the last three days. What do you think we need to do? And kind of guide him to think about it, making the decision. You know, we have different profiles set, so we had a slew of Dexcom that the g7 that were just they were losing their connection Okay, all the time. One thing with tandem is that your settings need to be more aggressive than what you need, and it works better. So what we've done is we've created a profile on his pump that I've called disconnect. And so anytime the CGM is being crazy, we move over to the disconnect profile. And that's just a milder profile.

Scott Benner 36:09
And oh, because your settings so you have your settings set up more aggressively, because you find the algorithm works better when your settings are more aggressive. But when you lose connection, you don't want it to continue to be that aggressive. So when you lose a connection, you go to disconnect, and that's a a gentler profile. As far as insulin use goes. Yes, I got it. That's that's an interesting workaround.

Leslie 36:31
I thought of that all by myself. Good for you. Thank you.

Scott Benner 36:35
How long did these disconnects last for? I

Leslie 36:37
mean, sometimes they would last for a few hours, and during the day, it's not that big of a deal, because you can just keep your eyes open, you know what? I mean, you're more aware. But at night especially, I would say just, you know, go to disconnect, but, but, well, just walking him through the steps of, okay, this isn't working, right? We're still not, you know, maybe it'll come back.

Scott Benner 36:56
Are you saying that that you're losing Dexcom signal completely, or just the connection to the tandem algorithm,

Leslie 37:02
he was losing it completely. We had just a string of dexcoms that were not working, and now we've had a string that are so I don't know if we had a bad shipment or what, but there seemed to be better now. The upside to having a string of bad G sevens that only lasts today seven or eight. Is that, when you get your replacement, you now have extras. Yeah. So we haven't done anything to treat cheat the system or anything like that, but we have, we have a few extras now. They typically die on day nine, and they're supposed to last to 10, so we call it in, and they replace it every time.

Scott Benner 37:39
Yeah. So you basically, you get nine days for free on the next one. Yep, yeah. No, listen, everyone should call in their devices when they don't work and get them replaced. Call them in, yeah, for sure. There is a moment where there's diminishing returns on having extras. Though. There's a spot where you're like, Uh oh, this is like, baseball cards. I have more of these than I can look at. Then I find myself like, when that happens. Eventually. If I'll get the email from us men, it'll be like, it's time to refill and I'm like, we're gonna skip this one, you know, or at least put it off for a few weeks and try to use up some of the backlog that we have to get back to even again, I've done that a number of times. I did it with insulin. Once, when Arden was used the GLP for so long their insulin use went down so long that when it was time to refill in some I was like, we don't need it, like, you know, like, we still have too much. So I put it off a little bit. Try to keep a balance between having a little bit on the, you know, backlog back stock, but not so much that I'm like, we're never going to use this and it's just going to go out of date. I'm trying to split the middle, if that makes sense.

Leslie 38:39
Yeah, totally. We're not there with the dexcoms yet, but in Fusion sets, we have so many those.

Scott Benner 38:44
And if somebody said to me the other day, like, Oh, I just paid a bunch of money for Lancet, and I was like, Oh, I could have given you some. We have extra Lancet

Leslie 38:52
here for sure. Yeah, he's 15. We don't change that.

Scott Benner 38:55
We use ours. And I still have, like, just over time, you just, like, I said, you get they give you too many one time, and then you've got them. And I was like, I don't want to waste them, so hold on to them. ADHD, how old was he when he was diagnosed with

Leslie 39:09
that? So he was eight, nine.

Scott Benner 39:13
Okay, anybody else in the house? Have it me?

Leslie 39:17
His older brother was just diagnosed about six months ago. What do they do for that? So Ephraim has, he had been taking a stimulant for a while, and then now he's done a non stimulant. Okay, I can't think, you know, they just, they need more help with, you know, executive functioning, doing, getting moving, doing the thing a lot of times, and paying attention. I think also getting blood sugar under control has really helped some of those symptoms as well. It was just kind of exacerbating an existing problem.

Scott Benner 39:50
How do you get an ADHD diagnosis?

Leslie 39:53
We went

Scott Benner 39:54
to a psychiatrist, psychologist. What do you say to what her title was? What's the entree to that?

Leslie 40:00
Conversation. I think my kid has ADHD, you know, what made you think that he just had this, you know, trouble paying attention, outbursts, you know, a bunch of different things. And he was younger when my older one asked to be like I was 100% sure my older one had it. He's highly intelligent. He just really has trouble focusing. And it's and he would say, Mom, I I just can't focus in school. But this kid is wildly smart. Finally, he my oldest one asked me if he could have a diagnosis. So I just made an appointment, and I and they kind of just do a full psychological evaluation, and it has, like, an IQ test and other stuff. So it doesn't just test for ADHD. It tests for other things too. Give me

Scott Benner 40:45
an example of an outburst, please. What does that mean? Like, start singing, start yelling incoherently. Like, what's an outburst?

Leslie 40:53
So not like a temp, like, super angry, and there's no, you know, we had tried all the the tools where you you see them going to get angry, and then you try to, you know, take a deep breath and calm down first. But there's no, there's no period of time where you could do that.

Scott Benner 41:11
Count backwards from 10 you Okay. Awesome. That didn't work.

Leslie 41:19
Look at your glitter bottle, glitter bottle across the room.

Scott Benner 41:23
But how about I throw the glitter bottle at you? How would that be? Okay, right, right?

Leslie 41:27
And it's not, I mean, it's not just the it's just not, it's being very quick, but almost too quick. Ephraim is paying attention. We homeschooled for a long time. Not anymore. We did this thing where they were memorizing throughout the whole year, they memorized this timeline, okay? And it was basically a timeline of kind of important events in the world, from the beginning all the way to whatever the last historical event is. So like now the last one would probably be covid, I don't know. And so you memorize five a week for the whole school year, and I just didn't think Ephraim was paying attention, and I was quizzing my older one on it one day, and then Ephraim just says the whole thing. So he is always paying attention when you don't think he is, but then it's, it's like, hard to control when you're paying attention. It's hard to explain,

Scott Benner 42:17
okay, I'm interested because I don't know, and it's it's fun to hear people talk about it from their perspective, but you also have it. So are you doing anything to medicate your situation?

Leslie 42:27
No, I wish I had tried medication when I was first diagnosed, and it did work well. But then there was an issue. I think there was an issue for a while where, where you couldn't get it prescription filled. So I would take it for a month, and then it would take me two or three weeks to get my prescription. So I was going on and off of it, which is far worse than just being off of it.

Scott Benner 42:50
Where do you live that you can't get ADHD medication?

Leslie 42:53
There was a whole thing in the whole country,

Scott Benner 42:55
oh, during covid, when everybody Yeah, because people use it like, I was gonna say off label, but I don't mean it like that. I mean they're using it as a stimulus.

Leslie 43:02
Stimulant. Yeah, it was, it was post covid, because I think it was around the time right before Ephraim was diagnosis. We had about eight months of medical craziness in our household, and it was around that time that I couldn't get it, and I was like, I can't keep taking care of all these people and going on and off my meds. My brain is not working. So I just

Scott Benner 43:25
were using Vyvanse, or Adderall or Vyvanse, okay?

Leslie 43:30
And then I would, if I had a long, an extra long day, I did have some, like, little Adderall boosters that I could take in the evening, because, you know, it doesn't last all day long. And so if I had a show, a show day or something like that, and I knew I was going to need my brain for later that evening, I could take a little booster,

Scott Benner 43:50
okay, it gets misused by the public sometimes, and then, I guess, yeah, that's what causes the shortage.

Leslie 43:56
I don't know what caused the shortage, but it was a whole deal. And I remember I would have to call around. We were using CVS at the time, and I would have to call CVS and figure out which CVS had it, and then go to that one and get it. And it was just a pain in the

Scott Benner 44:13
well, listen, when you make meth legal, some people are going to really want it, is what I'm saying. Yeah, yeah. Because I mean, really in the end, that's the but

Leslie 44:20
when you have ADHD, it doesn't feel like you don't get any benefit from it, besides just regular brain.

Scott Benner 44:27
Yeah, no, I know. I'm assuming that people like buy it and sell it and, you know, misuse it and everything

Leslie 44:33
else. Probably small town, there's not a lot to do here.

Scott Benner 44:36
Is meth a problem where

Leslie 44:37
you live? Opioids? Oh, really,

Scott Benner 44:40
yeah, I'm sorry. Sucks.

Leslie 44:42
It's funny because we're a little like, we're a tourist destination, so, but

Scott Benner 44:47
the people who live there are using the parks. What are we talking about?

Leslie 44:50
Yeah? So, yeah. I mean, it's just an I guess it's a small town thing. I don't know. People claim that the kids are bored, so they have to do drugs. I mean, I don't. Know, my kids are, like, doing school stuff so they're not bored.

Scott Benner 45:02
I'd love to get bored enough to wonder about, like, something like that. Yeah, I don't want the problem, but I'd love the boredom once, just one time, yeah, I want to feel bored.

Leslie 45:10
I always say, well, just like, Yeah, put your kids in theater or band or, you know, a sport,

Scott Benner 45:15
give them something to do. Oh, what else should we talk about? What? Because we have good time left here. I like this. I like that you're a group member in the Facebook group. I, you know, obviously I recognize your name, yeah. And I'm wondering if I could ask you, if you don't have more to add, I'd like to ask you some questions, but I want to make sure we've gotten to everything that you want to talk about first. Yeah, go for it. Okay, cool. So you've been in this diabetes game for, you know, a little over a year and a half. Now you're an active member in the group. You listen to the podcast. That's all fair, right? Yes, yeah. Can you tell me what helped you in the podcast? What helped you in the group? I'm interested from a person who's who's utilizing both pieces of the community.

Leslie 45:56
So my favorite episodes of the podcast are the ones with the people, with the folks who've been diagnosed for a really long time okay, because it gives me hope, like for the future, that everything really is going to be okay. And especially the ones who, you know, say things like, Oh yeah, when I was a teenager, you know, things weren't perfect, and I'm fine now, yeah, because, you know, you worry about your kid, and he, Ephraim is very responsible, and he does a really good job of taking care of himself, but you know, sometimes he forgets to change his sight, and then it doesn't, you know, work as well. Or, you know, we don't get that fast food Bolus, right. And then, you know, there's fast food tomorrow too. And so it kind of keeps things in perspective for me. And then the group is just great, because you just get a lot of feedback on different things, and you

Scott Benner 46:51
ask questions. Or do you learn? Are you more of a lurker or more of an asker? I do

Leslie 46:55
both, both. I don't ask as much as I used to. I think my last post was something about he'd been to ROTC camp, and I have never seen numbers like I had

Scott Benner 47:08
seen. Were they very like, it was so bad. They were like, higher blood sugars, lower blood sugars. What are we talking about?

Leslie 47:15
No, it was just a continuous roller coaster the whole time, and it was very humid. I mean, we're in the south, so it was very hot, very humid. They didn't have electricity, so they were sleeping hot and sweaty and doing it was orienteering. So that is like running around in the forest looking for things. I think I'm not exactly sure what they do. Oh, fun. He had, like, lost sight, which had never happened before, and he would just go up into the three hundreds and then plummet down to the 50s, and then just go up into the 300 and I was just, I want to go get him.

Scott Benner 47:53
So what did you use the group for that time, for answers, for his insulin in the heat, or for calm? I think I was

Leslie 48:00
just asking, like, can he do this? And you know, you get a myriad of answers when you get people being nice, people not being nice, people being like, You're worrying too much, yeah, yeah.

Scott Benner 48:13
But all that feedback somehow gets you to where you need to be.

Leslie 48:17
I think it does. And at least it gives you, know something to do when you can't sleep at 3am when you're looking at the number and

Scott Benner 48:25
that was happening to you? Yeah? Oh, yeah. I'm glad it was helpful, because I don't I'm on the outside. It's an interesting thing, right? Like, it's my community, it's my group, it's my podcast. I made it, it's here because I put it here, and yet I don't really get to understand it from the inside out, because, you know, it's all virtual. So I'm interested always in what makes people interested in the podcast over the Facebook group or the Facebook group over the podcast, and every once in a while, you meet somebody who uses both of them kind of equally, and it's always different personalities or different needs. I think that people use the all of the content, not forever. Like, there are some people who are just podcast listeners. They listen forever. Those people, you guys, are like, the backbone of all this. I really appreciate it. But the ones who come in and out are like, Oh, I'm gonna soak up five series and get get to a situation where I know how to Bolus for this, and then I'm probably not gonna listen to going to listen to that podcast again, because I'm not, you know, interested in hearing a story from a 62 year old woman who's, you know, had diabetes for 40 years. But then there's somebody like you who finds that very

Leslie 49:32
interesting. Oh, I find it so fascinating. I don't know why, but just the way that they used to handle diabetes. I just find it very fascinating.

Scott Benner 49:43
Well, I do too well listen. I'm a podcast person. I enjoy everybody's story. I like hearing people talk and tell me, you know, things that they've witnessed and experienced throughout life. I think that's just to me that's very interesting. I'm, like, more interested, like, in. And the people who are listening, like, what are they getting out of it? Like, who told them about it when they got here? What did they hear that made them stay? Why did it become valuable for them? You know, if they continued to listen, why did they continue to listen? If they stopped listening, why did they stop? How come podcast listeners don't go check out the Facebook group all the time? How come to Facebook readers, don't go check out the podcast all the time. I think there are answers to how to help people in the answers to those questions, but I can't get those answers without asking people directly, because if you go online and you try to start that conversation, it just turns into somebody who's like, I don't listen to audio. Like, awesome, great. Like, well, that's not helpful, but thank you. You know, what is it about a person who could go to a Facebook group and say, I am lost, I'm in trouble. My health is terrible, and someone come along and say, you should try listening to these five episodes. I think they would answer your questions, and they go, I don't listen to podcasts. Like, that's the like, that human part of it that I'm super interested in. Or you get somebody who's listening to the podcast has been really helped with something. And, you know, I say, like, Hey, you should go check out the private facebook or Facebook, I don't use Facebook. There might be something there for you. Go check it out. If you don't like it, then leave it. It's fine anyway. I don't know. I'm just, I'm always interested in how that stuff gets found and consumed and why it's valuable for

Leslie 51:20
people. Yeah, I was trying to think of how I heard about Juicebox, and I think it was I found, like, just a generic parents for children with type one group. And I think maybe somebody there recommended it, but I found out about Juicebox, I think he was still in the hospital, or maybe a nurse told me, I don't know, it all kind of went by. It runs together really, really quickly. I did tell our endocrinologist that I was going to be on your podcast. She thinks that's cool. She's really great, yeah, I think we lucked out.

Scott Benner 51:54
No, it sounds like you did. You have the kind of endocrinologist that might tell somebody about, hey, should go listen to a podcast.

Leslie 51:59
Yeah? And she is, you know, I mean, they have to say what they have to say, like they have to do what they have to do. And I understand that. But she has been really interested in the bolusing for the fat and protein, yeah, because we started doing that early on, when he was still MDI, if he was having something really protein or or or fat heavy. So we started talking about that with her early on, and she always asks us questions like, what do we do and how do we do it? She's pretty cool. I have even consulted her for pump, pump settings when I when I couldn't figure things out. And she's just great. I mean, she's, she's really great. You know, we talked about the different profiles and all of that stuff. So I really feel like we got lucky.

Scott Benner 52:43
No, it sounds like you did. Did you listen to, like, bold beginnings or the Pro Tip series, or is it just listening to stories that helps

Leslie 52:52
you? So in the beginning, I did listen to bold beginnings and pro tips, and then when he was deciding on a pump, I listened to the tandem episodes that were out, what was it? The guy control IQ ninja. Yes, control IQ ninja. And then there was a lady. There was a mom. Oh yeah, you had a really good episode.

Scott Benner 53:15
Is it called lazy ninja or something like that? Is that

Leslie 53:18
maybe, but she's the one who talked about the correction factor being like the throttle for the algorithm, and that has stuck with me. So it makes such a huge difference. So in real life, if I were to give him like a unit via injection, it would probably bring him down 40 points at this point in puberty. Insulin is water on the algorithm, it is either set to 20 or 25 in most segments. That's what works. And that's it. I mean, that's just, that's what works. Once I figured that out, I could change it

Scott Benner 53:57
actually. So there's an episode called control IQ ninja, 662, but then there's one called lazy control IQ ninja, which is 800 I think that's what she called herself while she was, while she was talking on about it. Maybe that's the one you're talking about. Probably, yeah, I don't know how you guys find your way through this podcast. Like, I'm looking at a list right now of like, algorithm pumping episodes, and some of their titles are just just ridiculous. There's one called Rise of the Machines. There's fastidious. There's one about the 780 G, but it's called suck it out of my thumb. Why would it be called that? And I named it? I don't know why the hell it's called that's ridiculous. Sorry, everybody.

Leslie 54:38
So what I do when I need an episode is I go on the Facebook group and I say, hey Nico.

Scott Benner 54:46
Well, yeah, poor Nico like that. It's her de facto job in the world. Is that she knows so much about the podcast, it's incredible. Don't be good at something. Don't be good at something. People will ask you to do it. I would also tell you that juiceboxpodcast.com has. Search function. You can type keywords into it. You probably will get some stuff back there too. In the end, I start running out of titles for things. And also, I guess, in fairness, when I make the episode, I don't think of it as a an episode about the 780 G, for example. Like I had a long conversation with somebody. I was like, Oh, I'm gonna call this one. Suck it out of my thumb. And then someone else comes along later, which is usually like, Nico or Isabelle, those people, and they're like, hey, this episode is really about the 780 G you should put it on the list with the algorithm pumps. And I'm like, okay, because I don't plan ahead like that. So I don't know if that makes sense or not, but yeah, there's, a ton of stuff for Omnipod five. We have a lot of loop content. I'm working on getting some trio content. I have, I think I have someone lined up who wants to come on and talk about it. It's gonna do like a short series, but that person's becoming difficult to connect with, so I'm working on that. And I'm getting ready to put together a control IQ series as well, because I, you know, want people to be able to get as much information as they can and make good decisions and go pick the pump they want and be successful with it. Yeah, that's the goal.

Leslie 56:10
Yeah. I really think control IQ is great when you understand it. The problem, like any problem, that I have had with with settings or keeping His number is because he is, you know, first of all, we're pretty new to this still. Yeah, he has grown 40 pounds and like, four inches since he was diagnosed. So his needs are just changing drastically. His needs went up actually 50% he just had an endo appointment last week, and his insulin usage was up 50% three months prior. So it's it just changes so rapidly, keeping the settings accurate is can become

Scott Benner 56:54
difficult. Yeah, now I understand, because he's putting on weight and size and that he needs more aggressive settings. Then, because of that, also there's probably hormones going on, growth hormone, like all kinds of stuff in there that needs to be counteracted with insulin as well. Like you said, it feels like insulin is water right now. Oh yeah, yeah. No, it and it's hard to keep up with. So there's an episode called waxing waning and Hulk Hogan's dragon. How can that be the title of a podcast episode? What does that even mean? I don't know. I should go listen to that to figure out what that is. Episode 302302. God, how long ago was that? No, I mean, you're going to be at this for a while, during his growth time and, you know, and then hopefully it'll balance out, you know, their hormonal impacts are going to continue, you know, forever. Whereas usually with the guys, I usually kind of like, levels out at some point after they're done growing.

Leslie 57:45
Yeah, that is, that is what I've heard. So, you know, we'll see, and we're just gonna keep at it. And he works really hard. He's really responsible. I don't have to remind him to Bolus for meals. He boluses for his meals. You know, he may not always choose the foods that are the easiest Bolus for but he tries, and he makes an effort. So I really good

Scott Benner 58:06
for him and good for you. Well, listen, I'm proud of him. I think that's awesome that he's that he's putting that effort in, and it's nice that you guys have him set up, thinking about it that way, it's a really great start to a life with diabetes, it sounds like so I think that the way you start is important, and when you start with good information and good tools, you oftentimes are able to avoid a lot of the problems that everybody's trying to avoid. And it sounds like that's the thing that's in your head too. So hopefully that brings you some comfort.

Leslie 58:34
Yeah, it does. And on the days when I'm trying to bother him less, and on the days when I'm bothering him too much, why are you leave me alone? Mom? I'm like, I'm sorry. I just love you. I just love you, and I want you to live a long, healthy life.

Scott Benner 58:51
Yeah, well, then you're gonna have to leave him alone all

Leslie 58:54
the teenager eye rolls at the same time, too. How old is he? He'll be 16

Scott Benner 58:57
next week. Yeah, he could use help. Don't worry, there's a balance there, but you just have to, you have to find ways to talk about it where you don't it doesn't feel like you're up his butt all the time, like that's what he's looking for. He's looking to feel little autonomous. And that's going to keep happening, by the way, as he gets older and older, he's going to be looking to break away from

Leslie 59:14
you, yeah. And I think one of the hard things too, is having him diagnosed when he's already in high school is, I feel this pressure to get him ready for college, yeah? Or just, I feel like we don't have as much time,

Scott Benner 59:31
yeah? But you will like, I mean, I get the feeling and, but, I mean, as long as you keep good communication, once he goes off to college, you should still be able to, you know, be a valuable part of his life. He's just gotta, I don't know. I mean, I don't know how to accomplish this, but you obviously have to get into a position where he's gonna be open to conversating with you about it while he's away at school, and not just like, it's not gonna be the ROTC thing over again, where it's just a, you know, a show, and there's nothing you can do about it.

Leslie 59:58
Yeah. I mean, I think if he were to. Do a trip like that again, we would, I don't know what we would do. We would maybe consider doing like the untethered method for the week or something. So at least he would have some long acting in his system, in case the heat and everything made things go haywire. He did that trip with Moby on. He doesn't wear the Moby. He wears the tea slim.

Scott Benner 1:00:17
Tea slim. But he did that trip with that one on, yeah, okay, and he still had trouble. Was he not bolusing, like pre bolusing? Was he was it was he falling from activity and then over treating? Did you ever figure out what was going on?

Leslie 1:00:29
I think it was a lot of it was the heat, because they never got cool, like they just never had, yeah, because there was no AC anywhere. And so then the heat made it go kind of haywire, and then also, like, sites weren't sticking. And we'd never had a problem with that before, but it was so humid, it just they weren't sticking, and it was just a combination of everything, food, of course, you know they never feed teenagers like decent food. Yeah, I know. You know, he does his best, but you know, he's 15 and wants to do what everybody else is doing.

Scott Benner 1:01:04
I got you. I understand. Okay, well, Leslie, I appreciate you doing this with me. I really do thank you for taking the time and thank your husband for setting up such a nice microphone. I appreciate that.

Leslie 1:01:14
I will thank him, yeah, yeah. I will say I did ask in the group if anybody had ever had an experience like ours, where, like, they thought something was wrong when they were a baby, and then were diagnosed later. And absolutely nobody had had that

Scott Benner 1:01:28
experience. You're like, great.

Leslie 1:01:30
I was, like, out of all of you people,

Scott Benner 1:01:32
well, I mean, I do think there are people who have low blood sugars, and then, you know, I've heard enough people say, like, Oh, when I was young, I had low blood sugars, like, I had to take stuff, like, I got dizzy and stuff like that. And then 1015, years later, I got type one diabetes, that stuff I've heard, but, yeah, I don't, I don't know. I really don't know, like, if you just caught a thing one time, or, yeah, it's just weird. It's just, is it just a really slow presentation? I mean, are there ways you can check to see, is he insulin resistant? Like, do you think he has insulin resistance or?

Leslie 1:02:05
No, I don't think so. Okay, the endocrinologist, She really said, like that the amount he uses, even though it feels like a lot to me, she said, it's not, how much does he use a day about he is averaging around 70 now. Okay, so she says it's not really, you know, for and because he's in, like, full blown, you know, hormone growing puberty, she said that it's fine.

Scott Benner 1:02:30
So, yeah, interesting. I mean, your husband has type two, right? Is he insulin resistant? I mean, obviously,

Leslie 1:02:37
yeah, so he doesn't. He only takes Metformin. Okay. So he was diagnosed type two in February. Then my mom, who lives with us, had a knee replacement in April, six weeks to the day after that, my husband goes into the hospital for what we thought was a heart attack, ends up with open heart surgery. And then eight months after seven months after that, Ephraim was

Scott Benner 1:03:01
diagnosed. Wait, so your husband had open heart surgery for what did? Very dramatic. No. How did that happen? What was that we're

Leslie 1:03:10
coming? We had dropped Ephraim off at dance, and I come home when I need to dye a costume for him to match the ladies. And so I have my husband send him outside to get a bucket for the dye, and he goes, gets the bucket, rinses it out, comes in the house, and I'm, you know, walking around, doing things, and I look over at him, and he's droopy. And I said, are you okay? And so then he in the meantime, he'd gotten my mom's blood pressure cuff. We just have things so it works out, took his blood pressure and it was something crazy, like 180 over. I don't remember what it was, but it was, it was crazy. And I said, Excuse me, I think we need to go to the emergency room. Yeah. And he was like, just bring me a baby aspirin. Jesus. How old is he? He is 10 years older than me. Um, at this time he was like, 52 so I said, I will bring you the baby

Scott Benner 1:04:02
aspirin. You can take it on the way to the hospital. Yeah?

Leslie 1:04:05
Basically, I said, but you're going to take your blood pressure again right now. If that wasn't, if that was accurate, then we're going to, I'm not raising these three kids by myself. Yeah? Like, I'm, like, we have life insurance, but, but, yeah, I don't, yeah, I don't want to.

Scott Benner 1:04:17
It's not going to paint the house, so let's go. Not no. Oh, no, kidding. And what? What was the problem?

Leslie 1:04:23
So they, you know, they kept him instead of sending him home because he didn't have a heart attack. But they said, if we keep him, he can get the test like tomorrow, instead of coming back in three weeks. So they kept him, did the stress test, did the heart calf to look and so they were thinking, they'll do the heart catheterization and put in a stent and he'll be fine. Well, that was over in like 20 minutes, so I knew that they couldn't fix whatever was broken with that procedure, because it would have taken longer. And turns out, he had a 90% blockage in his aorta, which is the widow maker. And right above that, he had a an aneurysm. So they couldn't, they couldn't use a stent, so, so he had to have open heart surgery. So he he also got transferred to a better hospital.

Scott Benner 1:05:12
Hey, is that the heart problems running his family? Yes, yes. Does type two? Yes? Do you think that he's had type two implications for much longer than he's been on Metformin?

Leslie 1:05:26
I think he had type two implications for a couple of years before.

Scott Benner 1:05:30
What's his a 1c right now? Think it was 6.3 does he have any weight to lose? Yes, yeah. What's my next question?

Leslie 1:05:40
So he tried tricep a time, or Manjaro, is my Manjaro trize. He tried the Manjaro. He he could not handle

Scott Benner 1:05:50
the side effects. What does that mean? He couldn't handle the side effects.

Leslie 1:05:53
He said it made him feel like crap, and he just couldn't. So he may try something.

Scott Benner 1:05:57
How long did he try it for? I don't know, but how long you guys been? You guys been married for so long? You're like, I don't know.

Leslie 1:06:03
I don't really care. Can I be honest with you? We have been married for 18 and a half years.

Scott Benner 1:06:07
That's not long enough for you not to know how long he tried Manjaro. It was

Leslie 1:06:12
a few months well, so at the same time, I was trying to get one just for weight loss for myself. But of course, insurance doesn't cover that.

Scott Benner 1:06:19
Yeah, but you tell me, it made him feel nauseous. It made him I'm not sure what all the problems, what was going on? Can I talk to him for a second? Leslie, I'm done with you now. Bring your husband, and I want to hear about this real quick. Does he want to be on a podcast for five minutes?

Leslie 1:06:34
Oh, I think he's on the phone. Unbelievable. He is really popular guy.

Scott Benner 1:06:38
These people their lives and things to do. All right. Well, listen, if he wants to come,

Leslie 1:06:43
he might be coming. Is he coming? Come here. Scott has questions for you.

Scott Benner 1:06:47
All right, Leslie, I'm done with you now. Okay, what's your husband's

Leslie 1:06:50
name? His name is Stacy. All right, cool. Fun fact. He looks like Santa Claus.

Scott Benner 1:06:54
How is that a fun fact for him? What do you mean? Like he's got a white beard?

Speaker 1 1:06:59
Oh, I look like Santa. I portray Santa.

Scott Benner 1:07:02
Stacy. How are you? I'm Scott, good. Hey, I just have a couple of questions. You tried Manjaro correct for about two months. What level like? What dose? Dose is the word I was looking

Speaker 1 1:07:16
for. She started me off on the 2.5 and I got up to 7.5 okay, and time I hit the 7.5 the side effects of nausea, vomiting, it just wasn't worth it to me.

Scott Benner 1:07:29
So were you getting benefits at the five? Like, was your A, 1c, lower? Your blood sugars better. Were you losing weight?

Speaker 1 1:07:37
Blood sugars were probably better. Yes, I did lose probably five, eight pounds in that time frame. Okay, just that short amount of time. So I have a follow up appointment. I'm gonna talk to her about staying at the five for a while and seeing how that

Scott Benner 1:07:52
goes. Tell me about the nausea and the vomit like did you change how you were eating? Were you eating a lot of fatty or greasy foods on the 7.5

Speaker 1 1:08:00
No, I wasn't hardly eating anything. And that was concerning to Leslie, because I was like, no food sounds good,

Scott Benner 1:08:07
yeah, no, I hear what you're saying. Like, there's days, yeah, I think I had two eggs so far today.

Speaker 1 1:08:12
Yeah, you gotta, like, force yourself to eat or drink a protein shake,

Scott Benner 1:08:15
right, right? But So you started at the 7.5 you had nausea, and then nausea was making you vomit. You don't think you were backed up. Were you still going to the bathroom?

Speaker 1 1:08:25
No, oh yeah, I was still going to the bathroom. No, that. It was the nausea and then the vomiting. I was like, I don't even like being around people who are vomiting and let alone me vomiting. So I was like, it's not worth it. Yeah, so did you think to try to go back to the five? That's all I said. I'm going to talk to her about going back to the five, yeah,

Scott Benner 1:08:42
I'd be interested in that for you. Because, I mean, especially, she was explaining about your heart issue and, and type, type two, and, etc. And, I mean, a, six, four, a, 1c, on a Metformin is nice, but, like, I mean, obviously you'd love to see it lower,

Speaker 1 1:08:56
right? Yeah. And that's what she was saying. She liked to see it lower, but she was more concerned about me losing the weight because the Metformin, you know, it's like taking candy. It really wasn't helping us doing anything, yeah, no. How much weight do you think you could lose? I want right now, I'm probably at 235 I want to get down to at least 200

Scott Benner 1:09:14
How tall are you? Nine feet tall. How tall are you?

Speaker 1 1:09:17
Exactly? Yeah, I wish probably five seven and a half.

Scott Benner 1:09:21
Let me tell you something. I'll share a good day. I'll share this with you, and hopefully it'll be valuable for you. I'm five nine, and the day I started a GLP over two years ago, I weighed 236 pounds, and I got into my I told my wife, I was like, Look, I need to, obviously, I need to lose 20 pounds. So my wife's like, 20 pounds, you think that's how much you think that's how much you have to lose? And I'm like, No 20s, right? I lost 20. And looked in the mirror, and I was like, Oh, well, obviously I need to lose 30 pounds. And then I got down to 200 and I was like, Oh, maybe I should be more like 190 pounds. And this morning I was 166 pounds. Is that what I was this morning? Yeah, 166 Six, and I'm telling you, I've got five more pounds to go. Holy moly, yeah. And so I think what happens is, over time, you just get a confused view of your body because you think of yourself as stocky or strong or something. Like, I don't know exactly how you think of it, but like, I'm speaking for myself, and that's the end of it. Like I probably my body, probably, if I go ahead and add back on some muscle that you know, that I think I need to have, I think maybe there's a world where I weigh 165 or 170 and that would be if I was in a perfect balance of fat and and muscle on my frame. But if I just stay a thin person, and I never add weight back, I still have a handful of fat around my stomach that I have to get rid of. And I weigh 166 right now. So I'm going to tell you that I think I'm around my correct weight. I just don't think my body composition is right at the moment, the balance between muscle and and everything else. But if you think you need to be 200 pounds, I think you're probably wrong.

Speaker 1 1:11:06
Yeah, probably. But that was just my, you know, my short term goal for right now.

Scott Benner 1:11:10
Oh no, no, no. I'm not saying it's not a good goal to, like, shoot for. I'm saying, like, when you step back and see the big picture, yeah, I was shocked by the number when it was over. And even seeing myself in the mirror, I was like, I never thought this is the size that I was supposed to be at. But now when I look at myself, I'm like, this is clearly this is the size My body's supposed to be. Yeah, yeah. I hope you figure something out at the very least. I hope the five helps you. Have you considered just trying ozempic Instead of Manjaro. No.

Speaker 1 1:11:35
And that was another thing I'm gonna talk to her about, just maybe switching up and seeing a different one would know,

Scott Benner 1:11:41
yeah, you because the Manjaro has a G, I P in it. Also, for weight loss, maybe you're not jiving well with that, like, who knows? Yeah, yeah. Also, how long were you nauseous for it before you stopped using it? Oh, probably good, three weeks. Yeah, yeah. I'm not sure if there's an amount of time where you might have gotten a little more accustomed to it was the nausea worse at the beginning of the week than at the end.

Speaker 1 1:12:06
No, it was actually torching in a week, probably as it was wearing off. Oh, because I was set, I had it set up, or routinely on Monday mornings before I went to work, I was giving myself my shots,

Scott Benner 1:12:18
and then by what, four or five days later, you started to feel nauseous. Yep, huh. So is there an argument to be made that you needed more, not less, or a different coverage of it?

Speaker 1 1:12:27
Maybe, maybe, like I said, I got an appointment with during the next couple of weeks. I gotta look at the calendar again.

Scott Benner 1:12:35
Yeah, I'd encourage you not to give up. That's the only thing. And I would tell you, if you get constipated, you could add, like, magnesium oxide to your regimen of, you know, vitamins, and that'll keep things moving if you get constipated. I don't know if you will or not, obviously, right, but I wish you a ton of luck, because obviously we don't want to see you, and we don't, we don't want to see you having another surgery, that's for sure. That must have been scary as hell, huh? No, yeah, yeah. What's the recovery like from that, I

Speaker 1 1:13:01
wouldn't want to ever do it again, but I was out of the hospital in three days. They said I was like, psycho Trooper to get out. And they're like, you can rest at home. You don't need to rest here, because the goal was, before you left the hospital, you had to climb a flight of stairs up and down. And they had me out walking. The next day, I had the chest tube still in, and I was up walking, wow,

Scott Benner 1:13:24
yeah, you were determined to get out of there,

Speaker 1 1:13:26
yeah, yeah, yeah. I mean, the worst thing was ever coughing or sneezing was

Scott Benner 1:13:32
the worst? Yeah. How long until you felt like, back to yourself? It's probably a year. No kidding, and now, yeah, you're there now. But like, do you feel like, with that blockage going is there a noticeable difference in, I don't know how your body works?

Speaker 1 1:13:46
Yeah, yeah, definitely. It was a definite nest. It was different because I wasn't fatigued all the time, yeah. Oh, and they're like, Yeah, your body was starving for oxygen and

Scott Benner 1:13:57
but scary, man, yeah. Did they tell you how long you were from just shutting off.

Speaker 1 1:14:02
No, they said if, if it would have ruptured, the aneurysm would have ruptured, I would have never made it from the from my house to the hospital, and we're probably half a mile, mile to the hospital.

Scott Benner 1:14:12
That's scary. Holy crap. You're gonna make me go to the cardiologist. Well, I'm glad you're doing better now, and I hope you're able to figure out the other part of it. I appreciate you setting up the microphone for Leslie and everything today. I just wanted to ask you that question about the GLP. So I appreciate you jumping on. Thank you.

Speaker 1 1:14:28
Yeah, and I've listened, I listened to the one that you put on there about the glps.

Scott Benner 1:14:33
Oh, you are listening to them. Oh, yeah, yeah. I have a ton of them. There's been a lot of people are using them now, a lot more than usual, or a lot more than even a couple of years ago, especially type ones. My brother, who I'm adopted, so it's not like a blood thing, but like my brothers, has type two diabetes, and he is really like flourishing on a GLP, as far as his a 1c and his weight goes, and just his life in general. So I hope you can find something that'll. That it balances you feeling well with actually getting all the benefits that come with it. Because a couple years from now on one I think you'd you'd lose that weight, and you'd be surprised. It takes a while, you know, but it does happen, like pretty consistently, yeah, yeah. It's a valuable thing for sure. Anyway, I appreciate you taking your time. Thank you so much, and please tell Leslie, I said, thank you as well. Sure will thank you. Have a great

Speaker 1 1:15:24
day. Bye, bye.

Scott Benner 1:15:34
Head now to tandem diabetes.com/juicebox and check out today's sponsor tandem diabetes care. I think you're going to find exactly what you're looking for at that link, including a way to sign up and get started with the tandem Moby system. Dexcom sponsored this episode of The Juicebox podcast. Learn more about the Dexcom g7 at my link, dexcom.com/juicebox a huge thanks to us med for sponsoring this episode of The Juicebox podcast. Don't forget us med.com/juicebox, this is where we get our diabetes supplies from. You can as well use the link or call 888-721-1514, use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us. Med,

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#1646 Engineering Mind

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An engineer dad shares his daughter’s type 1 diabetes diagnosis, his data-driven approach to mastering management, and how technology, persistence, and the Juicebox Podcast transformed their journey toward independence and control.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome back to another episode of The Juicebox podcast.

Mitch 0:14
Yeah, my name is Mitch. I'm the parent, caregiver of a type one diabetic, and I'm 48 years old, and I'm from Illinois.

Scott Benner 0:24
This episode of The Juicebox podcast is sponsored by skin grip, durable, skin, safe, adhesive that lasts your diabetes. Devices, they can fall off easily, sometimes, especially when you're bathing or very active. When those devices fall off, your life is disrupted, and it costs you money, but skin grip patches, they keep your devices secure. Skin grip was founded by a family directly impacted by type one, and it's trusted by hundreds of 1000s of individuals living with diabetes. Juicebox podcast listeners are going to get 20% off of their first order by visiting skingrip.com/juicebox you if you're looking for community around type one diabetes, check out the Juicebox podcast. Private Facebook group Juicebox podcast, type one diabetes, but everybody is welcome. Type 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 Juicebox podcast. Type one diabetes on Facebook while you're listening. Please remember that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. The show you're about to listen to is sponsored by the ever since 365 the ever since 365 has exceptional accuracy over one year, and is the most accurate CGM in the low range that you can get ever since cgm.com/juicebox a huge thanks to my longest sponsor, Omnipod. Check out the Omnipod five now with my link, omnipod.com/juicebox you may be eligible for a free starter kit, a free Omnipod five starter kit at my link, go check it out. Omnipod.com/juicebox Terms and Conditions apply. Full terms and conditions can be found at omnipod.com/juicebox

Speaker 1 2:29
Yeah. My name is Mitch. I'm the parent, caregiver of a type one diabetic, and I'm 48 years old and I'm from Illinois.

Scott Benner 2:38
Mitch, are you the parent, or did you mean to use the word caregiver, and then was disappointed in yourself when you said

Speaker 1 2:44
parent? Well, no, I'm the parent. I'm her father, and I used to be her caregiver, but now she's 18 years old and started college, so you know, I'm there when she needs me.

Scott Benner 2:52
I understand. I understand. So you're always going to be her parent, but you're starting to feel like maybe you're not as involved in the diabetes stuff.

Speaker 1 2:59
Yes, yeah. How do you feel about that? You know, it was, it was, it was different, because I was very, very involved. In the beginning, my daughter was diagnosed August the eighth of 21 was very much involved for until, you know, for the first couple of years, she very, I mean, in the beginning, she quickly learned. It didn't take too long, but so you know now that she's at college. You know that was nerve wracking for me, but she's doing very, very well. Had a little bit of a hiccup earlier this week. Never happened before. Waited too long to change her pod. Blood Sugar got really high, and I called her and she didn't answer because she was on hold with her local children's hospital with her Endo. So that made me very proud that she took care of that herself and talked to the nurse very quickly got it back down. But yeah, she's she's doing a great job. That is awesome. What was she about? 14 or 15 when she was diagnosed? Yeah, she was 14. Do you have other kids? I do. I have an 11 year old son? Anybody else have autoimmune stuff going on in the family? Yeah, I've been thinking about this this morning. My ex mother in law has some thyroid issues, but when this diagnosis happened, I just never dreamed that it would be type one, because we, we don't have any of that in our family. Yeah, you hadn't seen type one before. Just hadn't seen type one. I thought that, oh, she can't be diabetic because she can't be a type one, because we don't have that in our family. I didn't know that, you know, spontaneously it happens,

Scott Benner 4:28
yeah, or that maybe auto immune stuff travels in families too, yeah. And everybody gets a different thing. You know, your ex, mother in law, how long have you been divorced? Tomorrow actually, will be three years. Oh, do I congratulate you? Are you sad? Which would you prefer?

Speaker 1 4:43
Either way, it's fine. So So think things, things are going great. So it was not, not expected, but it happens.

Scott Benner 4:51
So you got, I'm sorry to ask, but your your marriage broke up soon after your daughter's diagnosis.

Speaker 1 4:57
It actually did. So she was diagnosed in. August of 21 and we separated in February of 22

Scott Benner 5:05
in July of 21 did you have any inkling that you might not be married anymore soon?

Speaker 1 5:10
You know, we were having, definitely having some issues, but didn't really think that that was going to happen.

Scott Benner 5:15
No, okay. Do you think that did? I hate to say this, but like, because I'm not blaming your daughter. But do you think that the diabetes made things I don't know worked as an accelerant on your issue, or do you not see them as related?

Speaker 1 5:28
I would say accelerant probably not, not necessarily the the actual diabetes per se. But you know me being the primary caregiver, lot of lack of sleep in the beginning. I'm an engineer, so I dug deep into this disease and said, I'm going to figure this out and spend a lot of nights, you know, watching the Dexcom understanding, you know, when this thing first started, being an engineer, I wanted to know, how quickly can the blood sugar drop, you know, how quickly can this happen? You know, I'm watching a trend curve. Even before we had the Dexcom, I was writing stuff down, you know, writing numbers down and visualizing, making your own chart, yeah, trying to make my own chart. Yeah. Before I even knew what a Dexcom was, and I got a Dexcom, I was like, Oh my gosh, this is amazing. How in the world did you know you like, you started out when Arden was so young? How? How in the world did you survive without this thing? Yeah, yeah. So there was a lot of sleepless nights, a lot of honeymooning. There's no way you can really figure out honeymooning. But and then we were on Lantis before we got on a pump. And she was very active. She was in volleyball and competitive dance, so that was a constant challenge. Yeah, yeah. So during

Scott Benner 6:39
covid, I did group zooms during covid that were huge, like three, 400 people. They acted like, like an AA meeting for people with diabetes, almost, is what it felt like. Sometimes, I don't know why. Like, during zoom people were very cool, like, nobody wants to do that anymore, which is fine. But anyway, the point of it is, is that there was this woman on that would come up every week, and she was really struggling. You could see people trying to help her. I tried to help her. I tried to help her like everybody was trying to help her, but she didn't have a CGM, and she kind of couldn't imagine everything that was going on. So I had her make a plot like I had her plot out her blood sugars. Then I was like, Okay, now just draw a line from the one on the left to the next one on the right and keep doing that. And I said, it's not exactly like a CGM, but here's the basic idea of what's happening to your blood sugar. And just seeing those lines like, oh, it was raising up. Here it was coming down. Here, she was, like, two weeks later, doing so much better. It was really and you're like, you listen, you've said twice, I'm an engineer. The first time I thought you were gonna say, I'm an engineer, I'm difficult. That's how I ended up divorced, but,

Unknown Speaker 7:38
but I'm definitely difficult,

Scott Benner 7:42
all right. But instead, you know, you were like, I'm gonna try to figure out how the insulin works. And I thought that was pretty brilliant. Like, you know, like, let's first understand the action of this thing so that we can I'm assuming your thought was, once I understand what it does, I'll learn how to stop it from doing it, or make

Unknown Speaker 7:57
it do it. Yes,

Scott Benner 7:58
yeah, that's brilliant. Yeah, very good. Yeah.

Speaker 1 8:00
Because when I learned, when they explained to me, honey, of course, I had all these terms thrown at me when this first happened, and they're honeymooning. And I mean, you were mentioned. I said, you need to get on the Juicebox podcast. I wasn't really a podcast guy. One of the nurses at our Children's Hospital recommended that, and I thought, man, I've got to get on here, because I've got so many questions. And these people, these doctors, these nurses, they don't have time for this, yeah, and I want to figure this thing out. And, and I remember the first time I got the Dexcom, and I started watching every five minutes or whatever. And I'm like, okay, so because my earliest fear was, you know, how fast is it going to drop? You know, because you know that you're afraid of getting too low, and how fast is going to go up anyway. You know, there was, there was a lot to figure out, a lot of research, because I knew about type one. I had a very basic understanding of it, but not enough to I remember even thinking, before she got diagnosed, I thought, oh, I should, like the night before, I should test her blood sugar, and then I would wake up the next day and forget about it. And, you know, I wish I would have done that earlier, because, you know, when she was diagnosed, her a 1c was 15, and she was in severe DKA, it was not it was scary.

Scott Benner 9:11
But, yeah, if you're thinking before someone tells you she has diabetes, and you told me you didn't think it could be diabetes. What was happening to her? How long was it happening that you actually thought like I should get a meter.

Speaker 1 9:23
You know, August, the eighth Sunday morning. That's when I took her to the ER that summer. I mean, I mean, even as early as the early part of June, and I didn't suspect anything in June, but she was losing some weight, not June, I guess she wasn't. But In June she she went on a trip with her mom. They went to, like, several beaches around Florida, and every time I was talking to her, she's like, Oh, I I've been taking lots of naps, and you know, we have to stop, and I have to stop and pee regularly. And I'm like, Oh, wow. You know you're finally drinking more water, because I I push water on my kids all the time, even before this, even before. Diabetes, okay, well, she's, she's drinking water like she's supposed to, and she's losing some weight because, you know, she's, she's getting older. Well, then practice started, and early June, after she got back from her trip, she had to go to volleyball practice, volleyball conditioning at like, 8am at the high school. And she did that for like, an hour and a half. And then she had an hour break, and then she had competitive dance practice for like three hours, and then she had a couple hour break, and then she had full on volleyball practice for like two hours. Wow. So you know, she was doing all this exercising like she's never done before. She was losing weight. I didn't really notice her losing weight until maybe around mid June to July, and she'd already lost some weight, even before then some and I just thought it was, you know, she's getting older. This is just part of it. She's getting taller.

Scott Benner 10:50
She's your oldest, right? So this is your first experience with all this, right?

Speaker 1 10:54
Yeah, absolutely. And I always thought she would be the healthy one. I mean, had issues with my son, other other issues with eyes and whatnot, and, well, this is my healthy one, because she she really doesn't get sick very often at all, and still doesn't get sick very often. You know, the all the practices are going on, and maybe a couple weeks before practice start, our IHS a dead week at the high school where they don't have any practice except for band stuff. And I remember her in the refrigerator late at night, and she just kept going back and forth the refrigerator. I got up and I said, and she was drinking milk, and I said, I said, Are you do I need to make you some food or what? She's like, I'm just really hungry and thirsty. I don't know what's going on. I'm like, well, you're doing all this exercise. Did you eat much today? And she said, Well, I got kind of nauseated at volleyball practice, and so I didn't eat a whole lot, so maybe that's what it is. Well, then I remember hearing her pee from all the way across the room, you know, she had the door shut, and I'm like, holy cow. You know, that's the one time where I thought, you know, maybe, maybe I should get a glucometer and see what her I didn't even know it was called a glucometer, but, you know, see what her blood sugar

Scott Benner 11:59
is because of the of the noise from the urination, like, because she was, it was so much, yeah,

Speaker 1 12:04
it was just so much volume, and she was, she was drinking, you know, she was drinking a lot. And then I remember maybe 30 minutes later, she got in, peed again. And I remember at that moment, I thought, oh yeah, the trip. I remember she said she was urinating a lot. So this is, like, the week, maybe the week before she started getting sick. Like, I really started noticing her getting sick. And she wasn't really sick up until then, but once in a while she'd say, Oh, I got nauseated at practice. I thought I was going to throw up. I said, Well, were you running? She said, Yeah, I was running, which I didn't even know vomiting was a symptom of type one. And then, you know, once that IHSA dead week got there, well, she stopped all of our exercise, and she went to band camp, and that's when she got sick. Okay, like, I remember that Monday band camp started, and she was okay, but then Tuesday she started, she's just like, I don't feel good. And I thought, Man, she's really lost some weight. You know, there was no, like, vomiting at that point because she wasn't as active. I'm assuming, you know, all the activity stopped, and then her blood sugar just spiked, I'm assuming is what

Scott Benner 13:05
happened. It's a reasonable thought, I mean. And then you're saying, by the time you got her to the hospital, she was her a 1c, was 15. This episode is brought to you by Omnipod. Would you ever buy a car without test driving at first? That's a big risk to take on a pretty large investment. You wouldn't do that, right? So why would you do it? When it comes to choosing an insulin pump, most pumps come with a four year lock in period through the DME channel, and you don't even get to try it first. But not Omnipod five. Omnipod five is available exclusively through the pharmacy, which means it doesn't come with a typical four year DME lock in period. Plus you can get started with a free 30 day trial to be sure it's the right choice for you or your family. My daughter has been wearing an Omnipod every day for 17 years. Are you ready to give Omnipod five a try? Request your free Starter Kit today at my link, omnipod.com/juicebox Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox find my link in the show notes of this podcast player, or at Juicebox podcast.com when 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 kind of 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 Juicebox podcast is sponsored by the ever since 365 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 ever since 365 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 ever since 365 learn more and get started today at ever since cgm.com/juicebox, one year, one CGM. Yeah.

Speaker 1 15:18
So Saturday, Saturday night, I remember, I took the family out to Joe's pizza, and she didn't really eat much, and she got done, we were coming home, and her respirations were fast, and she was sitting in my passenger seat. My wife, at the time, was driving our son. We were in separate vehicles. And I said, Why are you breathing quickly? And she still hadn't had covid at this point. And I thought, Well, is it difficult for you to breathe? And she said, No, I just can't really get my breath. And she was breathing fast. And so we got home, I did a covid test on her, I said, I checked her fever. She didn't have a fever that Saturday morning, she had woke up and she looked really swollen in her face. There was two things going on. She looked really solemn in her face. She felt terrible. I said, you have a sinus infection? She said, No, but I fell asleep first. She had a bunch of friends over Friday night, and Saturday morning she woke up and said she fell asleep first. I'm like, okay, so then I'm really watching Saturday night. You know, she's doing the fast respirations. I look at her arms, and her arms have like purple splotches on them, and and I said, Wow. I said, I said, How long have that? Has that been there? She said, why? I don't know. I just noticed it. And I said, Wow, you look really skinny. She said, Yeah, I'm eating plenty, but I'm not feeling good at all. And anyway, so we got home and we talked. I said, Okay, if you're not better tomorrow, I said, we're going to go to the ER. And she woke up the next morning and she had the splotches even on her legs, and she said, I just feel there's something wrong. I feel absolutely horrible. And so I said, All right, get you a drink. Well, she grabs a quart of regular Gatorade. And, you know, like full sugar Gatorade. And we had to head to the ER and, you know, just by chance, I went to the the smaller hospital that is less crowded, and we get there, and they take her back immediately, and I go in to see the doctor, and doctors, like, ask her some questions. He's like, two minutes, and he's like, okay, you know your name is Mitch. I said, Yeah. I said, Give me about 15 minutes. I really think I know what's wrong with your daughter, but I'm not going to say anything until we run sometime. We run some tests. You know, 15 minutes. He comes back and he's like, Well, I got one more test to run. First of all, she's positive for mono, he said, but I don't think that's the problem. He said, There's definitely something else here. I'm waiting for about another five minutes so she's positive for mono. He comes back and he says, you know, your daughter's a 1c is 15, and her blood sugar is 610, he said, your, your daughter is a type one diabetic. And I'm like, wait a minute. I mean, this is the model, right? Doesn't the model somehow affect the pancreas or something? You know, this is temporary, right? He said, No, no, your, your daughter's a type one diabetic. He raises up the sleeve of his shirt and he says, And he points to his Dexcom. He says, I'm a type one diabetic. He said, I've lived a normal life. I'm a doctor. He said, Your daughter is going to live a normal life. Everything's going to be fine. He said it's going to be a big adjustment for a few months. But you know, you guys can do it. Which Children's Hospital Do you want me to have come and get her? He said, Because she is in severe DKA at this point, she was kind of not really lucid. She was a little bit out of it, not just really not present. You know, she was awake. He was very concerned. And we picked the hospital that we had experience with. The team came, and I remember they had her take a potassium pill because her potassium was way low, because she was, I guess, severely dehydrated. Was terrible at swallowing pills, and swallowed this big, giant pill. You know, she actually swallowed it, and she remembers that. But anyway, I just, I thank God that we ended up going to that hospital, because usually people don't go to that hospital. And you know, I heard this podcast she did the other day of the kid that the hospital didn't recognize that he was a type one and sent him home. And even checked his blood sugar, and it was like 500 and they sent him home anyway. But you know, I'm just so thankful that this guy was a type one, and he was there to tell me at the time, hey, I'm a doctor, you know, she's gonna live a normal life. You know, I worry about people that don't have that, you know, and or they don't have a doctor, like we did at Children's, that said, Oh, you need to find the Juicebox podcast. You need to listen to that guy. Because, I mean, you, your podcast saved me. I mean, without having that source and that, you know, that information, I wouldn't have had somebody to answer all my questions. And you know, you did all the special series that the name escapes me right now, but I appreciate it serious, but anyway, Oh, great. Thanks to you, and you know, great, thanks to the god how the diagnosis came out. Because if I'd gone to a hospital that didn't have a type one, who knows what would have happened,

Scott Benner 19:54
but I sat a little, I mean, they would have, I mean, something would have gotten figured out. It sounds like she was really at the end of the. Did they give you an idea how much longer she would have been conscious?

Speaker 1 20:03
They said it was, it was one of the it was a pretty, pretty severe case. They told me what her, you know, the the pH of her blood was, or whatever that number is. And I remember they said it was in the severe level, like it was below. It was in the acidic side. And but the good thing is, you know, he got her on the right, you know, he got her on insulin and dextrose or whatever, right then. And then we got her to the hospital, and she was only in the hospital for three days, and then after the third day, she still had some ketones. And she's like, how do I get out of here? And they're like, just keep drinking water. Keep drinking water. She said, Because they said you're not going to get out until your ketones get into the small range. So she's like, I want to go to school tomorrow, because it was her first day of high school. She was gonna be a freshman, and so we got out of there, and she ended up making it to her first day of high school, even after being in the hospital for three days.

Scott Benner 20:53
So quite a turnaround. I was sitting here wondering how long she was then, because of all the different test results, and how long far along she was. It's even like striking as you're telling the story. And I'm sure you've been over this in your head 1000 times, but purple welts, significant weight loss, urinating strangely and constantly falling asleep all the time doesn't feel well, blah, blah, blah. Like if I walked up to you right now and said, Hey, I'm around another human being and listed all those things. What do you think I should do? You would say, I think we should take them to the hospital. Yeah, yeah. And, but when it's happening to you slowly, like that, it doesn't occur that way, the Kuzma respirations at the end. Like, I've been emotional since you brought that up, because I am sitting here right now and, like, clear as day in my head. I can see my, you know, my now 21 year old daughter as a two year old. I can see her laying on my wife's lap and breathing like that. Oh, really, yeah, just as clear as day. And I remember sitting there, not like, until it struck us what was wrong with her for the week before that, no one said, like, that's weird. You know what I mean? Like, she's acting, all we would say was she seems like she doesn't feel well, yeah, you know. And instead, she's dying, like, literally, Oh, yeah. And you're just like, Huh? That's interesting. And it just, it's weird how it never, I don't know, I don't know what that is about us that we I have so much hope, and the body's so resilient. Like, think of all the things that are happening to your daughter are happening to my daughter while they're being diagnosed, before they are and they just, they keep going. You know what I mean? Like, it's pretty fascinating. Honestly, Wow, you did a great job, man, getting working through all that. Were you by yourself in the hospital that night? Or was your son and your and your ex there as well?

Speaker 1 22:40
My wife, at the time, was there. I took her Sunday, and we had a family group chat. I'm like, okay, she's a type one, you know, at the time, I told my wife at the time, I said, pack a bag. Pack my bag. You know, they said we're going to be gone at least three days to children's, you know, the the emergency, I mean, the the ambulance from children's was coming to pick her up and and then my ex wife's like, oh, wow, the ambulance is coming. I said, Yeah, it's bad, yeah, because I told the doctor. I said, Well, can I just drive her there? I said, it would be quicker. And he said, No. He said, You're not driving her there. He said The ambulance is going to come and pick her up.

Scott Benner 23:14
Yeah, we need somebody with her constantly that can save her life, in case this goes the rest of the way south,

Speaker 1 23:20
yeah, yeah. And, you know, if, if she hadn't been in in dance and in volleyball and pre practices a day, and then if she hadn't got mono, because the mono is what really got me looking at her, because her face was swollen, and I'm thinking she had some kind of sinus infection. You know, all these things kind of came together to where we got her there on time. Or, yeah, it could have been,

Scott Benner 23:41
no, you did, yeah, well, it wasn't. And so there you go. That's pretty great. And she goes to high school. First day of high school, she makes it in.

Speaker 1 23:51
First day of high school, she makes it in, yeah, doesn't have the Dexcom yet because, you know, this is day four, and I'm already learning about, you know, I've listened to enough podcast where I've heard about 504 and I knew the nurse. I go to the church with the nurse. I'm like, you know, we got to get this started. Please tell all of our teachers. I'm trying to get a Dexcom. You know, you're going to have to help me convince her to check her blood sugar, you know, tell the you know, tell the teachers to watch out for signs. And fortunately, the nurse at the school. Her husband is a type one, so she knows quite a bit about it. So well,

Scott Benner 24:24
that's helpful. Yeah, keep running into type ones in very valuable situations. I mean, I heard in your voice how much it meant for you for that doctor to have type one and just to say to you, like, look me, I'm a doctor, I have type one diabetes, like, your kid will be okay. And, yeah, it's a big deal for you right there. Yeah, yeah, huge when you start digging in. First of all, thanks to whoever that. I mean, it's a pretty big Children's Hospital, so I appreciate that you guys are telling people about the about the podcast over there. I think I have a general idea of where you are. Somebody tells you about that, the words that I hear every day of my life. I'm not a podcaster. Person. But you know, you made it to it anyway, because you're looking for, I imagine you're looking for information. This person co signed on it, so you thought it was worth trying. Yes, yeah. So tell me about not just the podcast, but everything that you did in those first weeks to try to get your knowledge base up.

Speaker 1 25:18
Well, I mean, it started at the hospital. I mean, our hospital was, was great. They made us do the calculations. They had a they had a dry erase piece of paper that was laminated, and they said, All right, you're going to do the calculations. You know, we're going to do the carb counts for you. And they told me, they said, you know, you need to get on Calorie King, or you need to, you need to Google search and get used to counting carbs. And so they brought our food in, and they said, Here's how many carbs it is you do the calculation. Because before that, we had somebody come in with on a whiteboard and teach us the calculation, which, honestly, for me, I'm not. It's pretty simple for me, but it's not simple for everybody, and it's, I'm not trying to brag or anything, but I'm a math I'm kind of a math guy, right? So that part was easy, but then, so I did that. And then I'm, I'm thinking in my head, oh, so we've got to do a correction based on her current blood sugar. So I, you know, we have to finger stick her every time I'm hearing this word, you know, when they're going through they're talking about honeymooning. I'm thinking, Well, what if her pancreas kicks in, you know? So we're going to have to watch. How often am I going to have to check her blood sugar and and I still really haven't learned much about the Dexcom, but they're, they're telling me about it. So anyway, we do the calculation. They show me how to do the pin needle, and I'm, I've got to give her a shot the first time. And I'm like, No, I don't want to do this. This is difficult. My daughter's like, just stick it in my stomach. Just give me a shot. You're not going to hurt me. So fortunately, my daughter was fine with it. And so anyway, I gave her the first shot and and then, you know, all the teaching kind of ends, and I'm like, Okay, now what I do? And I remembered, you know, then a couple of the nurses saying, you know, because I'm asking all these questions, I'm asking so many questions that when the team of doctors came around the first time, there was like 15 doctors outside of her door, like, the next day, and they're Yeah, so I'm like, Oh, gosh. I said, What are you all doing here? So, well, this is unique case. You know, your daughter was pretty far gone, and she's making remarkable recovery, and so I'm asking these questions, and she's like, Oh, are you in the medical field? I said, No. I said, I helped my mom study for nursing, and I have an interest in it, but I saw all these warning signs, but I was too dumb to do a blood check, you know, or blood sugar check. I could have done this earlier. And that lead doctor says, Look, we have a dietitian here, and her daughter, the same thing happened to her. She was a dietitian, and she ended up getting almost to the point to where your daughter is. It happens. It's just, you know, anyway, so that helped, helped me kind of reassuring, yeah, it kind of helped me deal with that. But anyway, so, you know, I started looking at the podcast, and I went to the first episode, and I quickly found the Pro Tip series. And, you know, I just started going through the Pro Tip series, and you know, the words like Dexcom, and, you know, pump and basal and Bolus. And I started writing things down because I couldn't remember the difference between basal and Bolus. And, you know, me hearing your podcast helped initially talk to the nurses. Hey, how do I get a Dexcom? Because I remember, I watched, I listened to an episode and says, You got to get a Dexcom and a pump as soon as possible. And they said, Well, we're working with, work with you on a Dexcom, but your endo wants you to wait at least two months, three months to do a pump. And I'm like, three months, you know, I don't want to be on Lantus or this long lasting insulin. I said, we're getting ready to go home, and my daughter is extremely active. I've already learned enough to know that it's going to be difficult to control her with Lantus and honeymooning and being very active and, right?

Scott Benner 28:31
Yeah. And she's got all these different things that she does in high school too, yeah, right. So you're thinking about all that too. There's dance, and there's this, and there's, you know, volleyball and everything else. So you're on it right away. You figure out, like it's enough information that you can cobble together. What good questions they ask next? Is that good? Okay, all right, go ahead. I'm sorry. So yeah, about the Dexcom? Yeah.

Speaker 1 28:53
So, you know, I call, I remember I call the hospital. They tell me how to call the hospital, you know, after hours or before hours. I said, Look, I want to get a Dexcom. I was up late last night. You know, she's not sleeping as well because he had a low last night. Actually, we didn't get low early on, but they still had her kind of elevated early because they didn't know how, you know how much she was going to be honeymooning and all that stuff to you at that time, yeah, low to me was, you know, it's 90 and, you know, how low is this going to go? You know, I I'm not how often it's like 12 o'clock at night, how should I check her again at one? Should I check her again at two? You know, is she hype? Does she have hypoglycemic unawareness or all, you know, all these things are going through my head. So, anyway, so I called the nurse, and I said, Okay, we're going to try to get you a Dexcom. So they called my or they called it in. Well, my insurance denies it, and I call my insurance. Well, she's not been a type one long enough we need to make sure she really is a type one. I'm like, Okay, I know enough to know that this is a done deal. You know? You know she's this is not going to get better. Well, like two weeks goes by and I talked to a different nurse, and she's like, Okay, we're going to tell the. Insurance Company that she has hypoglycemic unawareness. Am I saying that? Right? Yeah, they do that process. And then I finally get approved to get a Dexcom. I have to go through a prior approval, and that was a nightmare trying to get things faxed. And then I finally get the Dexcom. In the meantime, I'm still listening to these podcasts. And then once I got the Dexcom, and I saw the numbers, like in real time, and the graphs, I'm like, I felt a lot better, but at the same time, the honeymooning thing scared me. And, I mean, there wasn't one particular episode that I remember, but I was just listening to it as much as I possibly could. And you and Jenny, and, you know, taking notes. And, you know, like I said, Without that, I see. So she was diagnosed August 8. That was a 15. I remember back in maybe March, she was down to 5.9 a, 1c by March, doing a lot of temp basal is with the Omnipod. For Omnipod dash, temp basal is we really understood that and and the good part of it was, it was a way for me to be able to communicate with my daughter throughout the day in high school, because, you know, she could keep her phone and I'd say, Hey, you're going up a little bit. That's at a temp basal. And she was fine to do it, and she did it, and she could see how it started to go down. And it got us a lot closer, because my wife at the time was very busy at work, and she knew that she trusted me to to learn it, you know, and so she kind of let me do that part of it. She still, still, still was there and still help, but I was the one that was

Scott Benner 31:30
learning. Yeah, and your daughter, seems like she picked up the mantle pretty easily. Like, is that personality wise? Not surprising to you.

Speaker 1 31:40
It really didn't surprise me. I figured she'd learn pretty quick. She's smart and she's very devoted, and I knew she would take it seriously. She didn't mind telling people. I'm not saying that's a bad thing if people don't mind telling people. I totally understand either way, but it just made it to where, you know, more people were aware at the high school, and more people were watching. We had trouble with the exercise in the Lantis, so I didn't attend practices, but I made sure I was at all the games coaches understood that even though there was a no eating policy, she was exempt from that until we got on the pump and then we could set a temp basal. I mean, that was a huge game changer, because, you know, we had to kind of estimate on Lantis based on ball games. And of course, we were adjusting it in the beginning a lot. I was calling, calling that the hospital a lot, which they were extremely helpful, helpful. And they still, they still are. I had trouble getting a pre authorization for a Dexcom, like, two years ago. So we're two years into this, and I had a manager at the hospital that, like, literally went downstairs in the dungeon and found an old fashioned fax machine to fax to my pharmacy company. At the time, my pharmacy provider and Mike spent the whole day trying to get this pre authorization so that we could get our Dexcom filled on time. But so we had, we had a lot of help.

Scott Benner 32:55
People helping. Yeah, two questions, how long did it take to get the Dexcom, and then how long did it take to get the pump?

Speaker 1 33:01
You know, I should have researched that exactly, but I'm going to guess, to me it was probably it really wasn't too bad on the Dexcom. I mean, it seemed like forever, but I'm thinking, and I looked in her log book, I'm thinking around four weeks to get the Dexcom, but I tried to get the Dexcom right away. And I remember the insurance saying, Oh, well, she's not been a type one long enough you're not going to be able to get that. And even some of the hospital people said, No, it's too early. And of course, I'm blessed with really good insurance, and I think it was around three weeks where the hypoglycemic un awareness went in, and then then the pre approval, pre authorization took, like, a week, and then, so I think it was around five weeks, yeah, and we went to see the endo after a month, maybe it was every two weeks, and then a month, and I said, Hey, I'm ready for a pump. And he's like, No. He said, You need to keep doing, you know, manual injections. In case you're not able to get pumps. I'm like, Look, we're experts at manual injections. You know, she's extremely active. Lantus is driving us nuts. Yeah, I think it was around two months, and we got the and we went right to the Omnipod, which I'm so glad we did, because I've got some friends, and, you know, they're used to the pump. I mean, they're used to, like, tubes, tubing, you know, she's never had that. She's always been able to leave it on all the time and and, you know, doesn't get in the way of sports. Yeah, it works for glad we had your recommendation on that.

Scott Benner 34:22
That's awesome. Well, it occurs to me that because of the way you think and the way you process, and I'd like to understand, please understand, it doesn't have to be just from the podcast. I'd like to understand what information moved you along, like, as you were learning, like, what is it you figured out? How did you figure it out? How did you put it into practice? And then, how did you QC it when it was once you had done something?

Speaker 1 34:49
Yeah, probably the bump and nudge episode comes to mind because, you know, it's always the doctors say, Well, you got to do 15 carbs. And, you know, you do their 15 carbs. You wait, and then once you go up, then, you know, take some protein or whatever to help stabilize it. And I can remember texting my daughter and saying, let's try Skittles. You know, one Skittle has, what, two grams or something, okay, you know, she'd start to go low. And I'd say, Just take two Skittles and let's see what happens. And at this point, honeymooning is over this. I mean, we're like, three months in, probably, and we started just doing small amounts of sugar, rather than the 15 or, you know, the entire bottle of juice, or whatever, the bump and nudge episode where you went into that, that was a game changer, because the doctors are like, well, just shoot for a seven, a, 1c, and if she's a little bit high before she goes to bed, well, that's fine. But then I learned from you that maybe 180 is not the greatest thing, and maybe 15 carbs, maybe we could do less than 15 carbs and see what that does and what the Dexcom. I mean, you can, you can see it. That made a huge difference, just hearing you talk about, you know, really estimating the food and glycemic load of food, whatever episode that was. I mean, that was huge, because my daughter was a huge pasta fan, and we didn't even try Chinese food for quite a while. Of course, now she eats whatever she wants, not really, but, I mean, she'll eat Chinese food or pasta or whatever, but, and then, of course, your episode where you talk about, I remember the first time she had pasta, but I was already ready for the rise afterwards, you know, I was ready for this to affect her blood sugar for over three hours. And I can remember, we Bolus, and she ate pasta, and then it was, like an hour and a half later, and she started to go up again. I'm like, Okay, well, this is what they were talking about, you know, with the extra rise, yeah, and you know, knowing that that's coming, and just hearing for me, I like to be I like to know as much as I can, and to be familiar with it. It makes it easier for me to process and handle.

Scott Benner 36:53
So it's encouraging for me, because what I'm hearing you say is I learned about the tools I needed, and I learned how to be flexible around Bolus thing and food. I learned that, you know, I needed to understand how this insulin was affecting the food, how the food was affecting the insulin, so that I could put a little bit in here and a little bit over there and make it, make it balance out, instead of just wild swings and just go for higher, go for lower. I mean, it's the intention of all of it, and it's really great to hear that. That's how it struck you, even early on. Yeah, you know that's that's awesome. I was trying to share this without being too personal, but Arden was explaining. A friend of Arden's wanted to understand diabetes better, and so they were sitting together and spent like hours talking about it, and she got her friend to a good place of understanding. But prior to it, the friend had kind of tried to dig into it on their own, and said to her, so like, you know, you can't really eat a lot of different foods, right? Because, you know, this person trying to figure it out on their own, which is lovely. And Arden is retelling this story to us later, and she says, I said to the person, no, my parents just wanted me to be able to eat normally. And it's like, one of the first times I thought, Oh, wow. Like, I know it's just gonna sound strange, Mitch, but like, we really, really, genuinely do not talk about diabetes a lot here. Arden doesn't like talking about diabetes. Like, I don't, it doesn't don't. It doesn't make her upset, but, like, it's just not a thing she does. And it's been a focus of mine to know what we're doing, do it, make sure everybody's on the same page. But yeah, we don't want to be running around constantly yelling about type one and talking about it all the time. So it's, it's not much of a topic around the house. And to hear her say, not acknowledge like because I know she knows, but it was just nice to know that she was out in the world somewhere, and the message she gave to another person was no. My parents have been trying for a long time to make sure that I'm okay and can live a life that I want to live. And it was, it was really great. It was like such a like a split second. And I think my wife felt it too when she said it. But I don't think Arden knew she was saying something that made me feel so accomplished and warm, you know. So, yeah, anyway, yeah, your daughter's gonna, like, get that too. Because, I mean, the first thing you said about her, I'm gonna ask you how, you know, how's she doing, managing on her own? But, like, when you signed up to do this, you were like, look, she might be starting college by the time I record this. And you said, they're like, I'm nervous about this part of the journey. And then to be able to get on right away and say, look, she wrote her pump too long, her blood sugar got high, and before I could even get a hold of her, she contacted her endo to see what to do about it. I mean, that must have made you feel awesome. Oh, I did, yeah, yeah. It made me feel awesome. Like, I was like, Oh, that kid didn't just sit there going, like, I don't know what to do, yeah. And she also didn't, like, she didn't have that feeling of like, I gotta go up my mom or my dad to help me, like, I can, like, I could figure this out on my own. That's really pretty, pretty great. You know, it's a really motivated. A decision by her,

Speaker 1 40:02
yeah, I was, I was very pleased, and she did all that. And I'm like, Well, do you want me to I mean, she's only, like, she's less than two hours away. So I said, Do you want me to come over there? She said, No, I'm fine. I've got all this stuff to do. Gonna be just fine, and I'm okay. And I said, Okay, well, good. I said, I told her. I said, How proud of what I was ever that. You know what you just said? I called. I went to call and said, Oh no, I'm already on the phone. I'm like, I texted my fiance, and I'm like, hey, look, listen to what just happened. Because I was extremely excited about it, because, because of your podcast, we have had these conversations for a while, and I, you know, maybe a couple of years, I said, you know, you've got to tell your roommate about this. You know, I'll have to have any and even early on, when the first I remember the first time she spent the night with somebody, I said, I got to have phone numbers of some of your friends, you know, because at that time, she was having a hard time waking up. She would sleep through her alarms. And I'm like, I've got to be able to get a hold of your friends if there's more than one, or the parents. So I even, I would text the parents, hey, you know, this is Caitlin's dad. I might have to call you tonight if, if something happens. I never did, but you know, because of your podcast, I remember episodes where, you know you had conversations with her friends, or Arden had conversations with her friends. And I just think that's very important, because I'm sure there's parents out there that send their kids over there, and then they know that they're low and they're like, oh my gosh, what do I do? They didn't think about that.

Scott Benner 41:26
Yeah, the pre planning is important. Yeah, yeah. Also, everyone listening, you should be listening to the podcast the way Mitch does. You're just Mitch. You're making my day. You're not regurgitating the entire episode, right? You can't even tell me exactly what the this makes me feel really good, the Pro Tip series, like you didn't, it didn't actually even pop in. You're like, Oh, what's that thing called? Yeah, maybe it was this episode. And you don't know the titles of them, but you have the information. Like, that's to me, is perfect, like you, it's how I think about it. Like, when you need to know something, you're going to have heard it before, and it's going to populate your brain while you're searching for data, like, while you're thinking, What do I do right now, there's a little unseen hand in the back of your brain, like, handing something up, going like this, think about this, and that's just fantastic. Like, I love that the podcast is working for you the way I intended it to and you and I don't think we probably don't have similar minds, you know, like, if you're in the engineering mindset, like, I don't have that and that my like, sing songy, talky thing stuck to you makes me feel really good.

Speaker 1 42:32
Oh yeah, I've enjoyed every one of your podcasts I can remember, just piggybacking on what you said. You said you can look at a plate and just tell how many units I can't even understand. I can't even understand. I can't even begin to process that, because I have to think very, you know, very methodically. Okay, there's this many carb I mean, I can look at a plate and guess the carbs pretty good, but I don't. I can't just look at a plate and say, oh, there's so many units. But I mean, when I I used to pack my daughter's lunches in high school every day, and so I would weigh everything, and not everything. I would weigh pasta. I would weigh pasta and rice. That's all I would weigh because I wanted her to have, you know, I didn't want her to have to worry about that. But the same time I told her his, I said, be mindful of how much I'm putting in there, so that, which I mean, and she's learned over the four years in high school that, you know, she can guess really good. But I've always thought it's interesting how you can just look at a plate. Oh, that's 10 units, or eight units, or six units or whatever. I can't do that. I, like you said, we think differently, but in that regard, but I'm

Scott Benner 43:31
kind of thrilled that you brought that up, because I don't know what everyone else does when they wake up in the morning, but like, I woke up this morning and I found myself contemplating how thinking works, I still don't get how. Like, my son is a great example, like, he's methodical the way he thinks through things. Like, I've said this on the podcast before, but my son went off to college, got a quantitative econ degree, and after a year of being out in the world, told us I should have learned how to code and bought a $350 online course, and seven months later, got a new job coding. Oh, wow. Had never done it before in his entire life. Actually, was not all that comfortable with computers before that. Wow. And I look at that and Mitch, I don't I if you gave me a lifetime to learn how to do that, I would not be able to do it, because I don't see pieces and put pieces together and build on them. Or however thinking works for him or for you, it doesn't work that way for me. I can't even explain to you that the things I understand I just look at and I understand them, and the things that I don't understand. I could stare at them forever and I don't know how to do the building block thing. Even to say I don't know how to do it, I think is false. I think my brain just does not work that way. As crazy as it sounds like, I'm flummoxed by algebra, you would never be able to teach me algebra. Never. Because I can't just look at it, and it just doesn't occur to me. But then something else will happen, something's broken, or something needs to be done. And it could be a big thing. It could be, you know, a nine step process. We just had a little part of our house renovated, you know, my wife's making lists about what we should do. And I stopped and I looked, I was like, No, we just have to do this, this, this, this, this, and it'll be finished. I think she's looking at me, like, where does that come from? I've been online researching this, trying to figure out all the steps we have to take. I'm like, Oh, it's just obvious. But it's not obvious to some people. And I'm gonna spend my whole life just wishing that some I don't care what it is, God, a book that we find buried somewhere. I want someone to explain that to me before we go. And I know I'm never gonna know, but it's just, it's very cool to see that your thought process and my thought process still mesh together in this, in this specific scenario, I feel warm about it, like it's okay, yeah, it's, it's terrific, good, and you're talking about it with her, because, you know, I've gotta, I gotta. I'm t minus three years here until she's gonna take off and go to college, and I gotta get all this into her head somehow. Does she think more like you or more like me? Probably, probably more like me. Okay, yeah. And how did you find I heard you say, fiance, you found a lady who jives better with the with the engineering mind. Yeah.

Speaker 1 46:20
I mean, I don't know if she would say that, but for some reason she's, she's crazy about me. I don't know why, but yeah, that's awesome. Good for you guys. That's great when you get married. Thank you. May of next year, congratulations. Yeah, thank you. Just got engaged a couple weeks ago on vacation, so

Scott Benner 46:34
that's lovely. Good for you. I want to pivot a little bit. We have a little time left in your note, you said that you started Zepp bound. I did. Yeah, can you tell me about how you got to that?

Speaker 1 46:45
You know, 20 years of failed diets, I've listened to every one of your weight loss diaries. When I started thinking about this, I listened to all your podcasts on GLP ones, and I talked to my doctor back in February. I'm like, I am. I'm ready to try this. I'm tired of failing diets. You know, it's 47 years old. My cholesterol was high. I was high risk. I weighed 260 pounds. I'm six foot one, and I, you know, you have, obviously it's been a game changer for you. I'll get into your episodes later. But My doctor was young, very understanding. Said, Yeah, let's give it a try. And I have good insurance, and I got approved, and a week later, I took my first injection. And people talk about the food noise. The food noise, for me, was loud. It was loud and it was silenced, I mean, and it's, you know, it's February, and this is August, and I'm down 36 pounds this morning, wow. And I've feel better than I thought I ever would. I never thought I would feel this

Scott Benner 47:48
good. And you're nowhere near it yet, and you don't even know really, that's the thing I've learned, having done this now for over two years, that every time there's like, a little milestone that happens, you're like, This, is it? Like, this, is it like, this is the best I've ever felt. It's the best I'm ever gonna feel like, this is awesome. And then 20 pounds later, you're like, Huh? Well, this is the best I've ever felt. I'm never gonna feel better than this. And then one day, you wake up and you say something to yourself, like I've said, which is, I'm now 20 pounds lighter than the number I imagined I should be. Oh, wow. And I'm looking at myself thinking, I'm not really there yet. You don't know where there is until you get closer to it. That's good. And you're going to be stunned how you look back a year from now. And think I remember when I was down 36 pounds, and I thought, My God, my life is better. And now six one and I weigh I mean, honestly, if you end up, I don't know your build, but if you end up somewhere between 192 five pounds or something like that, you're going to have lost 60 or 70 pounds, you know, and you're going to look at yourself and think, I do not recognize myself at all. And I didn't know. I had this thought constantly I was helping my she wouldn't mind. I was helping my sister and we'll all talk through this. Yesterday, I was trying to be, like, motivational to her, so I sent her a photo from Arden's high school graduation and a picture I took of myself the other day. And I was like, here, this is the same person. Like, that's where you're going to be. Just do it. Like, if you're lucky enough that this medication jives with you, right? She's like, What are your quick tips? And I said, If you can't, I said, if you can't take magnesium oxide until you do. And I said, and if you can't stop shitting, put your head down and push through it, because your body will get used to it at some point. Yep, just stay the course. And I'm like, You're gonna wake up a year from now and you're gonna weigh 50 pounds less. That's awesome. I spent an hour talking to her about all the stuff that might happen for her, and how valuable they'll it'll be if some of them happen, and how worth it it is to see if they happen like, you know. So just, you know, the weight loss. And she talked about the food noise too. Just always thinking about food. Or, you know, just constantly, like just being bothered in the back of your mind, like I should eat something, or I'm gonna I'm hungry when I'm not. And then I told her too. I was like, Look, until that food noise goes away, you have to want the medication to work. Make no mistake, you could eat through it. You could give yourself a stomach ache, and you could feel like crap and still get that food in. I was like, but just take the help it's giving you. You know what I mean, like, just try your hardest not to fight with it. So 36 pounds in six months is terrific. What level is that bound? Are you on right

Speaker 1 50:33
now? I'm still on the seven. Was it 7.5

Scott Benner 50:37
Yes, and you're losing weight still.

Speaker 1 50:39
I really need to up my dose. The problem is, my doctor has changed jobs, so he's not going to be my doctor anymore, and I haven't got a new doctor, and I'm supposed to get my refill tomorrow, and I really wanted to up my dose, because this is going to be my third month, and this month's been a little bit of a challenge. But at the same time, I want it to be a challenge, because I don't want to be, you know, I don't want to be completely spoiled by the medicine, because I still have to, I mean, it still takes effort, yes, yeah, still a lot of effort, actually, and but just not nearly what it used to be. I mean, it went from failed diet after failed diet after failed diet to the diet that actually works. And then you get some encouragement, and then you just keep going. And, you know, I don't know if you've done this early on, but every now and then I'll look down like, oh, I don't have this big, giant belly anymore. Sometimes I forget, yeah, or I'll see myself. I remember you said something about seeing yourself in the reflection when you were at an airport the other day your weight loss diary. And I've done that before. I've looked over there. I said, my gosh, I can't get over how much weight I've lost, or the episode where you talked about, you know, your kind of emotional moment you have when you bought new clothes. And I thought, Gosh, I'm not going to have that, because I don't really care about clothes. And then when I actually was able to go from a 38 to a 32 waist size, and, you know, really a triple x to a single x to a large shirt, and I put my clothes on, I thought, well, now I understand what he's talking about, I actually care about what I'm wearing. I care about what kind of jeans I buy, what kind of shirts I buy. I mean, it was bothering me a lot more than what I thought it was, yeah, and you lie to yourself a lot. I guess that's what it was lying to myself for years

Scott Benner 52:15
to make it palatable. I don't care about clothing. I'm not a clothing person, because that's what I always said, Yeah, cuz I look like crap in them and, and I can't buy cool looking stuff, and I, even if I would, I would look dumb in it. Yeah, yeah. That, that vibe. So, oh no, no, no. You're having the whole experience. This is awesome, man, kind of, at the same time, I did, like, you know, my daughter left for college, and I was like, All right, like, I went to the doctor, and I was like, listen, I kept these kids alive for a long time. They seem to be on a good path, like, I think I need to save my own life now, you know. And you're doing you're doing something similar. You're ahead of me, man, by a number of years, so a lot of awesome time moving up and, you know. And I hear what you're saying too, about not wanting to rely heavily on the medication, like you still want it to be about your effort, too. And I've had that experience. You'll hear about it eventually, but I've had that experience in the last couple of weeks, because there was a week here, I don't know what happened, exactly like I really couldn't begin to tell you, other than I think that there was a buy one, get one free ice cream sale at my grocery store. Yeah, and I bought one for my son, one flavor he likes. And I was like, Oh, I like this one. I haven't had this in forever. And I bought one for myself. And as I was walking out of the store, I thought I would make this into an ice cream cone. I like the crunchiness of the waffle of the of the cone. I'm gonna get a cone. And then before I knew it, over the next seven days, I'd had three ice cream cones, and because of the medication, of course, I didn't gain any weight, yeah, but I was off track, and I realized that I was like, Oh my God. Like, this is how this used to happen, but I couldn't stop it before, like, you know. So instead, I was just like, Oh, okay. Like, I was able to, like, kind of collect my thoughts and say, Well, I'm not going to do that anymore. I was like, Oh, I'm going to go low carb for a few days to get this, like, you know, the sugar out of my system and all this stuff. And the impact from it, and the impact of it, is, I spent the first two days of eating low carb just peeing like crazy, because my body was already, like, retaining a bunch of water from, you know, just having a little more sugar in my day. And I was like, wow. Like, what would have happened without the medication back then is, I would have woken up seven days later and been five pounds heavier, yeah, and then that stone would have just started tumbling, you know, and instead, I put on a pound and a half, I was within my like, I have a little swing that I'm okay with. You know, while I'm doing this, instead, I put on a pound and a half, I was able to, like, focus on it and not be overtaken by the fact that the ice cream sale was probably still on, and I just stopped it. I was like, Oh, I'm gonna put a stop at this right now. Now it's a week later. I. You know, it's been a couple of weeks since the it's been a couple of weeks since the buy one, get one free, and I'm back my weights, back to where it was before I saw the ice cream sale. Nice. That's good, yeah. And more importantly, the next time the ice cream is on sale, I guarantee you I'm not gonna, like, get tricked into buying it. I'm just gonna be like, Oh no, I remember what happened last time. I'm gonna have enough clarity to remember and to act appropriately. Because, as I was standing in the kitchen, you know, seven days into it, with my ice cream cone in my hand at the end of the day, because I worked hard, damn it, and blah, blah, blah, I thought to myself, This ice cream is not more valuable than how I feel, how I look, how healthy I am, like, this is not as important as that. And I just didn't even finish it and I threw it away, and I was like, Okay, I'll stop that now. So anyway, that's all because of a GLP one medication.

Speaker 1 55:51
Seriously, it's amazing to me how it makes your brain make sense of that. Instead of your brain trying to find a way to talk yourself into saying it's okay to eat it, yeah, you know, yesterday I I ate with some of my good friends, or day before yesterday, I'm the only one at the table that had a Cobb salad with steak. And that never happened. You know, I would always get fried fish or a big, you know, cheeseburger with a giant bun, or I would get fried chicken wings or whatever. And I, actually, I'm sitting there. I'm like, Huh? I'm the guy at the table that was able to get a Cobb salad with steak and a vinaigrette dressing, and absolutely loved it. And I still fight with the urge. Once in a while I'll open up the pantry and I'll be like, like, I want to get something to eat. And I'm like, wait a minute, I'm not even hungry. Why am I doing this? It's just I'm still not quite out of that habit yet. Even though I'm not hungry, I just do that once in a while, not very often, but I'm able to say, oh, no, I don't need that so. Or have less of it. Yeah, yeah. Have less of it. Like you said, you know, you were able to eat two or three Eminem's. I'm when I'm listening that episode, I'm like, I can't eat two or three m&ms. I mean, if there's m&ms, peanut m&ms, I'm going to eat all of them. Yes, you

Scott Benner 57:01
know, until, until I'm eating the bag, and then that doesn't happen any longer. Or, you know, I don't know if you've had the experience where you're at dinner with a bunch of people and they comment that you're not eating very much. And I look down, and I've never said it out loud, and I never would, but what I think now is, no, you're eating too much. Yeah, I'm eating the right amount. Because look at my body holding its weight at the proper, you know, composition, yeah, yeah. And that's not a thing, because in the beginning, when they said that, I'd say, Oh, I know. I can't eat enough because the medicine stopping me. And I thought of it as the medication stopping me from the amount of food that I wanted to eat. And now I see it as the medication allowing me to eat the amount of food that I actually need. Yeah, yeah. You got to be in it for a while until you start seeing all the different little lessons that come from it. And still, you know, you have to deal with I saw somebody online the other day. She's like, Oh, that's that. That's just that medicine that stops you from eating. And I was like, Oh, you don't understand this at all. It's interesting, like, and how dismissive they were about it. And I still go back to what I thought in the very beginning, which is, what do you care? First of all, like, I'm overweight, I'm gonna have a heart attack, I'm gonna have a stroke, I'm gonna I'm not gonna live as long. What do you care how that doesn't happen to me? Like, I just need that not to happen, right? Like, what I don't what's your stake in this? That you want to be shitty about this when you're talking about it? And, you know, by the way, that person I saw the other day online, like, if their avatars and a clear representation of them, they're not a person who struggles with any of this, yeah, you know, so easy for you to say, thanks. You know, anyway, Mitch, this is really great, am I? Are we missing anything that we we haven't talked about that we should have anything you want to add?

Speaker 1 58:50
I don't think so. I just, I mean, my main purpose was just to share with you, you know, my daughter's diagnosis. You know, watch your kids. If you have an idea to check their blood sugar, just check it. And of course, you know, most people that listen to this are probably this are probably already past that, but, and then just how, how much I relied on your podcast, how helpful it was, not just for my daughter, but even for my weight loss now. So just a big, big thank you to you and what you've done. And you know, you you went through this with your daughter, and you said, oh, I want to start a podcast and think about how many. I mean, literally, I mean, I guess millions of people listen to this. You, you do a lot, and very much appreciate

Scott Benner 59:26
it. Thank you. It's crazy. We're getting, we, I, I'm getting ready to celebrate our the podcast, 20,000,000th download, wow, yeah, which is, which is really insane. Like, there's, you know, there's podcasts, like, don't get me wrong, there's, you know, podcasts, you know, in the top 1% they probably get, probably get 15 million downloads a day, you know, or whatever. But I'm really proud that something this niche spread this far and wide, because it's. Unheard of for a podcast about type one diabetes to reach 20 million downloads. It would be impressive if a podcast on type one diabetes was up for 10 years and had 2 million downloads. Like that would be impressive. It really, it really would be to say that there's 20 or that, you know, on any given day, the podcast is charting in like 40 some countries. Wow. It's really, really nuts. You know, it's amazing. And for you to come on and share your story with everybody listening is very generous, because the podcast obviously doesn't exist very long if it's just me here talking to myself, I appreciate you taking the time and sharing all this, and you really honored me by the way you spoke about how the podcast helped you. I am incredibly, incredibly proud of your daughter, even though I don't know her. I'm excited for her to to get going and learn everything. And I'm going to tell you right now, Mitch, that there are going to be things that happen over the next four years to college that are going to test everything, and you're gonna have to keep learning and adjusting and being gracious with your daughter. And there's a lot still coming, man. So I It sounds like you're ready for it, though.

Speaker 1 1:01:10
Appreciate that. I hope so. Hope so. I guess one other quick thing, now that you just did a conclusion, no, the first four months of this, you know, with my daughter in type one was very, very stressful, you know, three to four months. But you know, after that, it was just everyday life. So those of you out here that you know are really stressed out, I see it on your Facebook page, I try to comment when I can, you know, the first few months, you know, depending upon the caretaker's personality, as to how long that takes. But you know, the first few months are really stressful, and it seems overwhelming, but you know if, if you listen to the Pro Tip series and talk with your indo and make the changes, and it does get to where it's just normal, and I like what you said about making sure your daughter, you didn't focus on that, I did that too much early on, but then realized that That was a mistake and stop doing that early on. And you know, it makes, you know, rather than talking about diabetes every day, you just, it just becomes the new norm. So yeah, anyway,

Scott Benner 1:02:11
I'm really glad for you that that you were able to see yourself veering and and bring it back. And if I had anything to do with that being in the front of your mind. I'm really happy to know that.

Speaker 1 1:02:22
So, oh yeah, yeah. Definitely did a lot of episodes where you you talk about that.

Scott Benner 1:02:26
So awesome. I appreciate, man, and I appreciate that you kept listening to that you you know, some people just do the management stuff and they're like, hey, everything's great. And then they go away and don't, I think there's a lot to be gotten out of the conversations as well. So thank you. I appreciate you. Benner, listener, Oh, you're welcome. Enjoy it absolutely. Okay, awesome. Mitch, hold on one second for me. Okay, sure.

A huge thanks to my longest sponsor, Omnipod. Check out the Omnipod five now with my link, omnipod.com/juicebox you may be eligible for a free starter kit, a free Omnipod five starter kit at my link. Go check it out. Omnipod.com/juicebox Terms and Conditions apply. Full terms and conditions can be found at omnipod.com/juicebox Are you tired of getting a rash from your CGM adhesive. Give the ever since 365 a try, ever since cgm.com/juicebox 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. Did you know that skin grip has donated over $100,000 in scholarships to help people with diabetes. The people at skin grip, they know what it's like to live with type one diabetes. They know what it's like when your devices fall off at the absolute worst time. And they're here to help skin grip.com/juicebox save 20% off your first order when you use my link, that's what you get for being a Juicebox podcast listener. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcasts and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. 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 35 years of personal experience, and we break down complex. Concepts into simple, actionable tips. The Diabetes Pro Tip series runs between Episode 1001 1025 in your podcast player, or you can listen to it at Juicebox podcast.com by going up into the menu. I am here to tell you about juice cruise 2026 we will be departing from Miami on June 21 2026 for a seven night trip, going to the Caribbean. That's right, we're going to leave Miami and then stop at Coke. Okay, in the Bahamas. After that, it's on to Saint Kitts, Saint Thomas and a beautiful cruise through the Virgin Islands. The first juice Cruise was awesome. The second one's going to be bigger, better and bolder. This is your opportunity to relax while making lifelong friends who have type one diabetes, expand your community and your knowledge on juice cruise 2026 learn more right now at Juicebox podcast.com/juice, cruise at that link, you'll also find photographs from the first cruise. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com,

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