#1529 I'm Not That Stupid
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Facing braces and a fresh diabetes diagnosis at fourteen, Kiley proves confidence beats assumptions.
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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
Friends, we're all back together for the next episode of The Juicebox Podcast. Welcome.
Kylie 0:15
Hi. My name is Kylie. I've had type one for almost 12 years now, and I live in Wisconsin.
Scott Benner 0:22
Check out my algorithm pumping series to help you make sense of automated insulin delivery systems like Omnipod five loop, Medtronic 780, G twist tandem control, IQ and much more. Each episode will dive into the setup features and real world usage tips that can transform your daily type one diabetes management. We cut through the jargon, share personal experiences and show you how these algorithms can simplify and streamline your care. If you're curious about automated insulin pumping, go find the algorithm pumping series in the Juicebox Podcast, easiest way. Juicebox podcast.com, and go up into the menu, click on series and it'll be right there. Please don't forget 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. This episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next.com/juicebox this episode of The Juicebox Podcast is sponsored by us, med, us, med.com/juice, box, or call 888-721-1514, get your supplies the same way we do from us. Med, today's podcast is sponsored by the insulin pump that my daughter has been wearing since she was four years old. Omnipod. Omnipod.com/juicebox, you too can have the same insulin pump that my daughter has been wearing every day for 16 years. Hi.
Kylie 1:59
My name is Kylie. I've had type one for almost 12 years now, and I live in Wisconsin, Wisconsin.
Scott Benner 2:05
You're not from there, though. No, I am. You are. How long did you work on getting rid of that accent?
Kylie 2:13
I'm from the Milwaukee area originally, which doesn't necessarily have the strongest Wisconsin accent, but it comes out every once in a while, for
Scott Benner 2:21
sure, show off. We'll get to it. 12 years. How old are you? 2626 Oh, wow. So you were, you were but a child?
Kylie 2:29
Yes, so I was 14. It was right after eighth grade. Awesome,
Scott Benner 2:33
right before high school. Yep.
Kylie 2:35
I also got braces that summer, so that that was
Scott Benner 2:38
fun. Oh, what a nice thing, yeah, just pile
Kylie 2:41
everything on within three months. Diabetes, braces. High School, you
Scott Benner 2:45
got braces and diabetes, yep, and crippling, crippling, I don't know, self confidence issues. How do you remember the time? So I
Kylie 2:54
started showing symptoms, really, in March. So I was diagnosed in June, and I this is looking back at the time I didn't really know. So my cousin is also type one, and she was diagnosed the November before me, so she but she was two, almost three, so quite a bit younger. And we were at my uncle's house, at my aunt and uncle's house for Father's Day. And my mom was talking to my uncle and said, like, oh, like, I'm really concerned about Kylie, like she's been losing all this weight, drinking all this water. And he's like, Well, we've got a test kit here. Let's just poke her finger. And so I was upstairs with my cousins, and they came upstairs and they said, Kylie, like, we're going to test everybody's blood sugar for fun. You go first. It's like, Well, I'm not that stupid. I know something's up and I'm
Scott Benner 3:46
not that stupid. Might be the title of your episode. Go ahead.
Kylie 3:51
And so they tested my blood sugar, and it said, hi. Like, well, that's not good. And they tested again, still said, hi. I went downstairs, ate some more food, because, you know, I was starving. And then they didn't come back down, and I went back up, and they were all crying. And I, you have, we're really sorry, but you have type one diabetes, we've got to go to the hospital. So off to children's. And thankfully, I didn't have to stay overnight.
Scott Benner 4:16
But wait, hold on, why didn't you stay overnight?
Kylie 4:19
They weren't concerned about me going into like, full blown DKA, like I had ketones and everything, and my blood sugar was incredibly high, but they were able to get it down. And then the next day, we went back in, and they had classes for us, so an immediate concern, they just kept me there for a while, gave me an IV fluids, insulin, and then I came back the next day and they took my fasting blood sugar, and I see went
Scott Benner 4:46
from there. Yeah, you spent time in the hospital, then about probably six hours you went home that day. Yeah, interesting. Hey, did they complete the charade and test everybody else's blood sugar or once they got yours? They like, we're not really testing everyone's. No, I don't think they tested anyone else's. I find that insulting. I just want you to know, yeah, they weren't.
Kylie 5:07
They weren't really good at hiding their intentions, like, I think I knew something was up, like I wasn't really surprised. Like, I can't make it 20 minutes in the car without having to go to the bathroom, like something is wrong. But I didn't really want to say anything
Scott Benner 5:20
you thought something was wrong with you. I don't
Kylie 5:22
think consciously, necessarily. But like, once I saw it and I was like, Oh, this, this makes sense. Start
Scott Benner 5:28
putting the math together. You're like, oh, okay, yeah, yeah. My mom used to, like, think she was getting one over on you, but it was so telegraphed and obvious and like, it just reminded me that when when you said, like, Kylie, we're all going to test our blood sugar for a fun you go first. Like that would have been my mom would have been like, hey, guess what we're doing everybody. I'm like, Oh, what is she trying to trick us into? Oh, my gosh. Well, and they couldn't even hold it together. They were crying when you came back.
Kylie 5:55
Yeah, I think if they would have done it like before a meal or something, or like when they were already testing my cousin's blood sugar, it would have been a little bit more convincing, but just the fact that it was the way it was randomly, yeah, all
Scott Benner 6:07
right, before we move on, take a sidebar. Explain to me what a cheese curd is. I
Kylie 6:11
don't exactly know, but it's good for you. Kylie, good for you. It's just like this squeaky cheese that is often like, they are very good, but often deep fried. If you go to any farmer's market here, there will be like three stands selling them.
Scott Benner 6:26
And last thing explain to people to what degree the entire place shuts down when the Packers are playing. Depends
Kylie 6:33
on if bars and restaurants very busy, grocery stores very empty,
Scott Benner 6:39
just everyone's watching a game somewhere
Kylie 6:41
interesting. Okay, all right, there's the few Bears fans who are out doing something else, but
Scott Benner 6:48
they don't count. No, I've only been to your state one time, and I'm sorry to say it was to go visit my mom before she passed away. But yeah, you said in Oshkosh, right? Yeah, it was a nice place, except for something called Lake flies that apparently, what are those?
Kylie 7:03
They're just like flies that are around the lake and they are annoying and bite, and there's lots of bugs in the summer in Wisconsin.
Scott Benner 7:12
Yeah, I handled it. I want to just say for the record, my brother Rob was freaked out when we saw them. He acted much like a baby. I just want to say, Okay, so you've got your, you got your diabetes. Now the summer is really getting going. And also I, and I don't mean to, like put it, we've just met and all, but probably just became, like a woman recently, too, right? Not quite, actually, oh, hadn't gotten to that point yet.
Kylie 7:35
No, that also came after, so that was probably delayed by, oh, my diagnosis, diabetes,
Scott Benner 7:41
braces and that all in that summer or no, it was later. No, that
Kylie 7:46
was like eight months later. That was actually on my birthday. So that was fun.
Scott Benner 7:52
Sorry, I didn't mean to hit a nerve. I didn't realize that there was an actual, an actual memory.
Kylie 7:59
It's just one of those. It was a significant day, because my birthday is like, well, this is great. Like,
Scott Benner 8:05
yeah, it's a bit I've been listen. Arden has been in this phase of her life for many, many years now. I'm still watching her come to grips with it. She's like, this is not fair. And I'm like, No, I see that. So you get your diabetes, you start with, I'm going to try to guess a little bit here. It's 14 years ago. You get a pen. Or how did they start you with your management? Yep, I
Kylie 8:31
started on a pen for both Humalog and Lantus. And so actually, because my cousin was diagnosed before me, and my next door neighbor also was type one at that first class. I asked was like, So when can I get a pod? And how do you know what that is? Like? Oh, like, well, let's just figure all this out. And after six months, I started on the Omnipod because they were going to make me wait a year. But then my dad basically convinced, I don't know how, but he convinced the doctors and nurses to let me have it before then,
Scott Benner 9:03
did you end up having an oddly close relationship with your younger cousin, even though your ages were off?
Kylie 9:08
My family's all pretty close, but, like, we definitely have a different relationship. She gets it and I get it. So we talk about it occasionally, but honestly, not that much. No, you've never once joked that she gave it to you. No, no, that would have been a good one, huh?
Scott Benner 9:23
That's possible. And it's funny why you were saying this. I'm gonna say this quietly. Yesterday I saw my brother in law, and it's like, it's still winter time here, like spring is sprung and all. But like, you know what I mean? God, I miss everybody. We haven't seen each other in a few months. I'm like, yeah, it's winter time. Like, you know, everybody's hunkered down and everything. And the part that I went unsaid was, Nah, you guys get a sick a lot when I see you in the winter. So I don't know if it's really you, but when I see you in the winter time, I end up sick usually. So I'm, you know, that's part of the reason
Kylie 9:51
I was sick the February before I, like, started showing symptoms. So I feel like that was kind of the catalyst for everything. But do
Scott Benner 9:59
you. Genuinely feel like your your health was waning before then, before
Kylie 10:03
I was diagnosed, yeah, oh yeah, for sure. For sure. Okay, we had Spring Break that March, and like normally, you gain weight on spring break, and that was the first spring break, and only that, I lost weight. And from there, I just kept losing weight. By the time I was diagnosed, I was probably 5758, and only 100 pounds. Oh, wow, that's
Scott Benner 10:27
giving away Wisconsin's greatest secrets. We all gain weight during spring break. Over here, it was very, very strange. Everyone talked about it. Do you see Kylie's lost weight during spring break? What's going on?
Kylie 10:40
We were on vacation, so like you're eating food is not the best for you.
Scott Benner 10:44
You know, I got you what prompts you to want to come on the podcast 14 years later,
Kylie 10:48
you had posted a couple months ago that you're looking for people to fill some spots. And I considered it, and I like talking about diabetes and all my friends and experiences from it, and thought someone hopefully could benefit from something
Scott Benner 11:06
or awesome. So very specifically, when you were like, Oh, he's looking for place people to be on the podcast, you thought I'd like to talk about community and friendship. Today's episode of The Juicebox Podcast is sponsored by Omnipod, and before I tell you about Omnipod, the device, I'd like to tell you about Omnipod, the company. I approached Omnipod in 2015 and asked them to buy an ad on a podcast that I hadn't even begun to make yet because the podcast didn't have any listeners, all I could promise them was that I was going to try to help people living with type one diabetes. And that was enough for Omnipod. They bought their first ad, and I used that money to support myself while I was growing the Juicebox Podcast. You might even say that Omnipod is the firm foundation of the Juicebox Podcast, and it's actually the firm foundation of how my daughter manages her type one diabetes every day, omnipod.com/juicebox whether you want the Omnipod five or the Omnipod dash, using my link lets Omnipod know what a good decision they made in 2015 and continue to make to this day. Omnipod is easy to use, easy to fill, easy to wear, and I know that because my daughter has been wearing one every day since she was four years old, and she will be 20 this year, there is not enough time in an ad for me to tell you everything that I know about Omnipod. But please take a look omnipod.com/juicebox I think Omnipod could be a good friend to you, just like it has been to my daughter and my family. Contour, next.com/juicebox that's the link you'll use to find out more about the contour. Next Gen blood glucose meter. When you get there, there's a little bit at the top you can click right on blood glucose monitoring. I'll do it with you. Go to meters, click on any of the meters. I'll click on the Next Gen, and you're going to get more information. It's easy to use, and highly accurate. Smart light provides a simple understanding of your blood glucose levels. And of course, with Second Chance sampling technology, you can save money with fewer wasted test strips. As if all that wasn't enough, the contour next gen also has a compatible app for an easy way to share and see your blood glucose results. Contour, next.com/juicebox and if you scroll down at that link, you're going to see things like a Buy Now button. You could register your meter after you purchase it. Or what is this? Download a coupon. Oh, receive a free contour next gen blood glucose meter. Do tell contour next.com/juicebox head over there. Now get the same accurate and reliable meter that we use. Yeah.
Kylie 13:54
I mean, I feel like you've got a great community on the Facebook group, and I, before I joined that, I found my own group here. And I don't know, I feel like I've taken advantage, like use diabetes to have experiences that I haven't. I went otherwise, like I I went to diabetes camp. I went to there used to be these conferences that were young adults with type one. And I went to a few of those. And I also very active in breakthrough T 1d activities.
Scott Benner 14:26
It's so proper not calling it JD, RF, that was awesome. Okay, you did that. I had to catch myself. Do you know that I was coming to your area to give a talk when COVID hit and they canceled it?
Kylie 14:40
Ah, yeah, that, yeah, that they shut down everything else pretty quick, like they were supposed to have. I think the Milwaukee area Gala was supposed to be that weekend, and then they canceled it. It's
Scott Benner 14:50
very possible that's when I was coming. So I remember being I was at my son's baseball thing for college, and I was standing outside. On a field, my phone rang and they were like, it's we're not, we're not doing this for canceling. I'm like, that'll be fine. And then, like, a day later, I was like, Yeah, I'm hearing more stuff. I don't, I don't think it's gonna be fine. I was so, yeah, and it just never got rescheduled. The whole Well, it's interesting. You bring up the community too, because that that entire infrastructure changed so significantly around then not a call out, but, you know, breakthrough, T, 1d very specifically changed how they did a lot of their in person stuff, and they thinned out. I think that's a polite way to say it. They thinned out a lot of their staff at local areas too.
Kylie 15:36
Yeah, we went from three separate chapters within our state to combining to just one?
Scott Benner 15:42
Yeah, and you're asking a few people to try to cover a lot of ground, and it just becomes difficult. So let's talk about then, what you got out of that, like when you went to those early meetings, even before JDRF, what were you looking for when you went? What did you end up finding at the hospital or just at for like, the community, like gatherings and things like that. I don't know. It's
Kylie 16:06
just always been really nice to like, meet someone and instantly like they understand everything. And Not that I mind explaining what type one is and everything that goes along with it, but it's nice to not have to like, it's nice to meet someone, and they just feel like, oh, yeah, you've got type one so do I, and you can talk about things, or they might have tips that you haven't heard or do something differently. And just, I feel like, very helpful to be able to talk to people. Yeah?
Scott Benner 16:35
So in the beginning, it's just not having to explain yourself is very valuable.
Kylie 16:40
Yeah, I think it just instantly connects you with people. Like, there's been a lot of times in public where someone will come up to me and just, like, show them, like, my pod's usually visible, and they're like, you've got type one, and like, show me their pump. And we like, talk for a little bit, and then go on our way.
Scott Benner 16:57
Did you ever go through a time where you, like, you took care of yourself. You're not burned out, but you don't want to know one ounce more or talk one second longer about it than necessary.
Kylie 17:09
I'd say a little bit to, like two years ago, like coming up on 10 years felt like, like, wow. That's a long, long time for me to have it. Like, hitting double digits felt significant, and I just like, I didn't not take care of myself. But I just like, this sucks. Like, I've been doing this for 10 years, like I'm kind of done,
Scott Benner 17:29
yeah? Like, God, it's still here, yeah? And so, like, can you describe that part of it? Like, so what do you do? Do you like, slide into, like, a minimal care mode, enough that you're healthy, but not enough to like you don't you just don't want to hear one more second about it. Is that how it feels, or how would you describe it?
Kylie 17:46
Like, I didn't really stop doing what I was doing. I didn't really change anything. I got all I take that back, I wasn't stressing as much about being just, like a little bit high. Like, I wasn't seeing like a 150 and thinking, oh, like, I should get this down right now I was more okay with that riding, which is, I mean, not high, but not well I want to be normally, so I just kind of loosened it a little bit. But I think at that time I was on the Omnipod five,
Scott Benner 18:17
okay, but I see, how long did it last for that feeling of like a
Kylie 18:24
just maybe, like a month or so. It really wasn't that bad.
Scott Benner 18:27
No kidding. Do you think it's just the the anniversary that made the feeling come? I think so, yeah, just kind of threw it in your face. Okay, so going back to meeting people in real life. Are any of those people still friends to this day?
Kylie 18:40
Yeah. So the second year I went to diabetes camp, that was after my sophomore year of high school, I made a friend there, and she lives in the city that I do now, so we still hang out and see each other, and then I'm part of the breakthrough T 1d ride group. So I see those people twice a week during the summer, because we go for bike rides around, usually afterwards we get dinner. Or if someone's hosting, like, have a potluck at their place. How tight knit
Scott Benner 19:11
is that ride group? Is it very state centric? Or like, were you impacted when that group of people passed away recently in a car accident? Yeah, so
Kylie 19:20
that was actually people from our group, so they're initially in the Madison group, but they didn't ride with us as much, but a very impactful group within the community, and a lot of the people that I bike with regularly are good friends with them. And
Scott Benner 19:36
so just shocking, yeah, that
Kylie 19:39
was a hard time for our group, and it'll be a hard time this summer, for sure,
Scott Benner 19:44
always the next time you ride will be the first time you've ridden since then. Yeah, oh, I'm sorry, yeah, that's terrible. One of the people had been on the podcast a couple of times, but, I mean, I didn't know anybody personally, still, it was just, I mean, shocking is the right word, a crazy accident. Yeah. So, yeah, okay, well, I didn't mean to be a bummer. I, for some reason, I thought they were in a different state than you and you might know them. And I'm like, you happen to know these people are like, yes, yes, they're they're right here. So sorry. I actually
Kylie 20:10
coincidentally, like, you had posted all of your like advocacy stuff for like, Diabetes Awareness Month, and then I saw that Michelle had been on a couple of your episodes, and I hadn't listened to them, so I went back and listened to them. And in the second time she's on, she's talking about our jerseys for Wisconsin have mile 23 on our sleeves for her son. And this is the first time I had met her, and so she actually tells the story of the first time we met.
Scott Benner 20:40
Oh, really, that's in the podcast. Yeah, no kidding.
Kylie 20:44
I think she calls me Kaylee, though. But I was like, I remember that close
Scott Benner 20:49
enough she got a lot of the letters. You know what I mean? Actually, she just just eliminated one. Really, you would have been okay. And this is your mom's fault for giving me this fancy name. I think
Kylie 21:01
they got it out of a baby book. So no kidding,
Scott Benner 21:03
has your life gotten bad since the Kylie Kelsey person has gotten famous?
Kylie 21:07
No, she seems like a fun person. It's was Kylie Jenner before her. And I like Kylie Kelsey better than I was better for you.
Scott Benner 21:15
Yeah. But do people actually like hear your name and go, oh, like Kylie Kelsey? No,
Kylie 21:20
I in high school, there was one kid who like, he's the first time I'm he couldn't, he always forgot my name because we weren't in a lot of classes together. So every time he'd ask, he's like, oh yeah. Like Kylie Jenner, I was like, yep, different spelling, though. So
Scott Benner 21:36
that's me, great. Okay, so meeting people in person has been a big deal for you. Would you explain to people how? And then I want to move to a different idea, but like, what has that given you? What has not just in the moment, but what's endured for you over time after meeting other people, diabetes comes with a lot of things to remember, so it's nice when someone takes something off of your plate. Us. Med has done that for us. When it's time for Arden supplies to be refreshed, we get an email rolls up and in your inbox says, Hi, Arden. This is your friendly reorder email from us. Med. You open up the email, it's a big button that says, Click here to reorder, and you're done. Finally, somebody taking away a responsibility instead of adding one us, med has done that for us. An email arrives, we click on a link, and the next thing you know, your products are at the front door. That simple, us, med.com/juicebox, or call 888-721-1514, I never have to wonder if Arden has enough supplies. I click on one link, I open up a box, I put the stuff in the drawer, and we're done. Us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and the Dexcom g7 they accept Medicare nationwide, over 800 private insurers, and all you have to do to get started is call 888-721-1514, or go to my link, usmed.com/juicebox, using that number or my link helps to support the production of the Juicebox Podcast,
Kylie 23:16
especially For like the like, breakthrough, T, 1d, stuff. It's just nice being around people who are even if they're not type one, but they have a connection, or even the people who like they don't have a connection. I think that's even greater. It's just reassuring to see that there's so many people who are like, dedicated to trying to find a cure and better treatments. And it's just also all the people that that I've met are always like, super fun, super nice, and it's nice to be able to talk to someone and trying to work in person, work through like, Hey, I'm having this issue when I'm doing this. Have has this happened to you? That type of stuff. It's just
Scott Benner 23:59
really valuable when people see you, yeah, yeah, now in every walk of life, but, but I see how that brings that so then when you I mean when the you know, the internet keeps exploding through your life with diabetes, and now you can meet people online who have type one. Is the experience similar? Or is it different online than it is in person.
Kylie 24:21
For me, I more use, like online for like, quick questions, and I haven't really met made any type one friends. Well, that's also kind of a bit of a lie. How
Scott Benner 24:32
many times have you lied in the last 20 minutes? Kylie, I know I keep,
Kylie 24:36
like remembering things as I'm talking in college there as part of a type one group. And so especially during COVID, we would meet up with other colleges and, like, just kind of play games online. And so that was fun. That was more social.
Scott Benner 24:52
It's still socially connected, and it brings the same thing, like, doesn't matter if it's in person or online, you get the same kind of judge from it. Yeah. Yeah, I
Kylie 25:00
prefer meeting people in person, just because I feel like it's easier to talk to someone and get to know someone that way. But yeah, no,
Scott Benner 25:09
I hear what you're saying. Okay, I got this message last night online about what the podcast had done for somebody. You know, it was pretty long, like I'm not gonna read it to you or anything like that, but it was long, and even as I was reading it, I thought, Oh, that's awesome. Like, I can't believe it does that for people. And it's weird, because I think I know it, like, I know it does it for people. Like, I've been told enough times, you know what I mean that. And yet, for some reason, like, it still shocks me when it happens happily. Like, I'm like, Oh, good. There's a been value here for this person. But when they explain it, or when you talk about it, it's always deeper than I can imagine that for some reason, like, like, the value for you, I guess, is what I mean,
Kylie 25:53
yeah. I understand what you mean. Yeah. It's just nice having that community and resources available.
Scott Benner 26:00
Some people are just overwhelmingly grateful for it. It always makes me wonder, like, what were they missing, or what did they need that that this was so impactful to them, like, especially
Kylie 26:11
if you don't know anyone in person or like, before you or your kid or family member is diagnosed, I think having that online community to at least get you started and point you in the right direction is awesome, yeah,
Scott Benner 26:26
and I guess just if you feel lonely too, like, what a what a great lift it is to get rid of that. All right, so tell me a little bit about growing up with diabetes. What was your takeaway through high school? In
Kylie 26:38
high school, like looking back, I didn't, definitely didn't manage it as well as I could have been. But I went to the doctor, and they said I was doing great, so I didn't think I needed to do anything else and but like, it really didn't impact, like, my what I did like, it was a part of my life, but I never con i never considered, like, letting it stop me from doing anything. And I don't, I mean, I do remember that the doctors telling me that right away, they're like, you can still do whatever you want. You can. It's not going to stop you from doing anything and but I also had already known people who had it, and I knew that they did whatever. So it just never really was a thought. You
Scott Benner 27:19
didn't need to be told that, but it was a nice it was a nice backup, like you and like, it was valuable to hear still, I think so, yeah, like, you're going into high school and everybody's starting to feel themselves. Or some people aren't you get diabetes and braces. Like, does it change your social structure? Or did things chug along? Or did you find people pulling away from you. Was there any experiences like that?
Kylie 27:43
No, I've been really lucky. I've had really close friends, like one of my best friends, even to this day, I've known since I was four and so and a lot of my friends I've been close with since, like, elementary school or high school, and even though, like, we live in different cities and went to different schools, like, we've all just stayed in touch and have remained really close. So I all my friends, like a lot of them came and did the walks with us, or they volunteered with me, and they've been really supportive throughout everything. Yeah,
Scott Benner 28:16
you had good friends. They continued on that path. Yeah, that's excellent. Did you have any trouble dating?
Kylie 28:21
No, it never really seemed to be an issue. And if it was an issue for someone, I was unaware of
Scott Benner 28:28
it. Okay, yeah. So even if it had been an issue, you had such a good experience, you couldn't tell me right now. Like, if there was a person out there that was just like, oh yeah, Kylie, I did not talk to her because this you wouldn't even know that, no, that's pretty awesome. Did your parents foster this feeling or how? Or was it? Do you think it's your energy? I mean,
Kylie 28:47
my parents have also always been very supportive of me and like, they have always helped out with volunteering and rides and walks and, like just fundraising to try and find a cure, and if I ever need it. Like my mom, she always took care of all my prescription stuff, especially with when we had to go through I don't know if you ever had to use edge park for Dexcom. I have
Scott Benner 29:16
had to use edge Park, yeah. So she would call
Kylie 29:18
them eight times to figure out why my prescription hadn't been sent yet, and so she always was very helpful with that type of stuff. I've
Scott Benner 29:27
always been very grateful for edge park for making me comfortable cursing at people on the phone. It's not a thing I was comfortable with at first.
Kylie 29:33
I'm sure she was close or dead because she's like, I don't know why. Like, they said they don't have the prior authorization. I just sent it to them, like, three months ago. I don't know why I have to do this every time I was like, Thanks for going and thankfully, by the time I was off to college, I could get them through Walgreens, so we didn't have to do that anymore. The
Scott Benner 29:54
amount of times I've said to somebody, no, I don't have a fax machine because it's. 2020 you're saying you'd like me to fax that to you. I started, just started saying, like, you guys, know, there's other ways to do this. Is everyone not stunned when in 2025, someone says, you, can you fax that to us? You think, how would I do that?
Kylie 30:18
Yeah, I would be like, I can send it to you in an email, but
Scott Benner 30:23
I can magically take a photo of it and have it in your hand five seconds from now, but I don't, I don't have a telephone that has a printer on it. They're behind I'm sure there's a reason. I'm sure the infrastructure is old. I'm sure they're tied into other systems that are old. There's clearly no discussion back and forth, like, that whole thing of, like, you know, I need to get, you know, verification that you still have diabetes. Well, I've had it for 15 years, I know, but we gotta just, we gotta be sure and, like, all that stuff, one, it's not going away. I also think some of that is just, I wouldn't call myself a conspiracy theorist, but I do think that, like, insurance companies make things difficult on purpose, and so like, I think it's some of that. I've also known people who've worked at those companies, and trust me, if you said to them, like, why is this so frustrating, they'd say, I know we're trying. You know what I mean? Like, it's just such a weird system that you caught in, and you feel
Kylie 31:14
bad that you're getting upset with a poor person who's on the phone who has no control over the system, but it's like, I gotta get somewhere. And I've called three times this
Scott Benner 31:23
week. Yeah, I will say that I'm trying to think maybe three years or more. Now we've been using us med. They're also sponsors, but like, we genuinely use them for CGM and pumps. And I just want to say us med.com/juicebox, Call now for your, I'm sorry I forget the ad call out for your free something, so they'll check your blah, blah, blah, make sure it's okay. I have
Kylie 31:45
been meaning to look into them because, for whatever reason, like, sometimes it takes like, two weeks for the pharmacies around here to get my prescription. So it's like, all right, I'm almost out. I can't really wait for this. Well, you
Scott Benner 32:00
know you're so close to Canada, maybe we've, maybe we've confused the fact that you're there and they're, they're not sending the stuff there anymore. I don't
Kylie 32:07
know. Maybe there's a whole other state in a lake in the way. But is
Scott Benner 32:12
that Michigan? Wait, yeah, the up, yeah, we're calling that a state too. Wow, gosh, I don't know. Once it gets that cold during the winter, I don't even think you count. My brother lives very close to you, obviously, and and you know, like he's accustomed to it. And there are still times been there forever, and there are still times during the winter that he'll send a note and say, like you wouldn't believe, like, what's happening here with the weather. It's like, there's so much snow, or it's so freaking cold, or, like, you know, like, that kind of thing last
Kylie 32:45
winter was it wasn't that cold, but it was incredibly snowy. Like, there were like, three days where people, like, stayed home from work, because separate times, we just got a ton of snow, just throughout the entire day, and we're like, well, we're not going to work today. Like, that would be dumb. And that's interesting,
Scott Benner 33:02
too, because you were a group of people who are not generally stopped by the snow. So you know that'd be like if a Canadian ran from a penguin? Very, just unprecedented. I kind of want to go backwards a little bit like your your little cousin has type one. There's people around you that have type one. Are you guys all like a similar background, are you, like, from a Nordic background, or something like that?
Kylie 33:24
I am, but I don't so I think there are a lot of, like, Irish, German, Swedish, Norwegian people in, like, Wisconsin, Minnesota area, but I don't know specifically about some of the other people that I know. But yeah, okay, my cousin and I are
Scott Benner 33:42
you are? Yeah. So are there other autoimmune issues too? Yes. So
Kylie 33:46
my cousin is on my dad's side, and then my mom has Hashimotos and alopecia, and my sister has Hashimotos, and I have Hashimotos, but I don't take anything for it yet, because my TSH has not been above two you have symptoms? I don't think so, not that I've noticed, at least.
Scott Benner 34:07
Don't you think alopecia would be a great radio name in the 60s. Hey everyone, it's alopecia. How are you? We're here today. We're going to do the news and then talk about the weather and maybe sing a couple of songs alopecia. I'll be right back. It'd be an awesome radio name. I
Kylie 34:22
never thought about that, but it does kind of sound like a name every
Scott Benner 34:24
time I hear it, it's all I think just the first time I've said it, you know, there's still times now I'm like, Wow. 11 years I can't believe I've never said that out loud. Every time someone says alopecia, I think, what a great radio name, wow. So a lot of just more like thyroid stuff, though, yeah, yeah. Is there weight issues within the family?
Kylie 34:47
My grandpa was always pretty large. He actually had type two diabetes, but that's really it. For the most part, we're pretty average. I'd say pretty average.
Scott Benner 34:56
What an exciting description for your family. Like,
Kylie 35:02
we're pretty, pretty active group, I think, like, no one has ever, I'd say, struggled with their weight. So people,
Scott Benner 35:10
I mean, and that biking thing that's a lot of work, like, is that a thing that came naturally to you, or is the thing you picked up for, I was gonna say, for diabetes, but once you were trying to, like, have, like, you know, connection with the diabetes world. So the first year
Kylie 35:22
we did the ride, my dad and I did it. I had not ever biked more than, like, probably five miles, so it was definitely something that I picked up. Like my dad pressured me. He's like, You should really do this. We should give it a try. And it's like, Fine, we'll try it. And then it was really fun. So we've just stuck with it.
Scott Benner 35:40
You were peer pressured by your father into riding a bike for diabetes. Yeah, it
Kylie 35:44
started out. He was like, we could just do like, 50 miles. And he's like, Oh, but the metric century is like 60 miles. And I was like, All right, fine. And he's like, Oh, but there's a good turnaround spot at 80 as a dad, we gotta stop somewhere.
Scott Benner 35:56
Was he that guy prior to that, or was he trying to be rah, rah, for diabetes for you. Oh,
Kylie 36:01
no. He's definitely like, all all in like, never, never stops moving. Always like, what's next? What's next? Really?
Scott Benner 36:08
Person, what kind of work, what kind of like, generally, what kind of work does he? Did he do? He's a recruiter, so for the military or for business, for businesses, all right, just got a lot of energy. Yes, yeah. You don't think it's cocaine or anything like that. He's natural. I
Kylie 36:23
mean, if it is, he's been hiding it really well. So I like to
Scott Benner 36:27
ask an adult, like, because you're older now, like, you're like, Hmm, is my dad on the on the sugar cooker? I don't, I don't think so. No, no, no, I don't think he No. I just think he's got it. Like, does he drink a lot of coffee?
Kylie 36:38
He has, like, one cup of coffee, and then he's, like, that's too much. I get too jittery. So
Scott Benner 36:43
no kidding, he's just got good energy. May I share a bike riding story with you? When I was a child, I was not in what you would call, like, fantastic. My cousin says there's this, like, bike a thon at the park, and we're going to do it. I want to be honest with you, I don't even remember what it was raising money for, but you go around, you say to people like, you know, can you pledge a certain amount of money per mile, that whole thing? And this may be the early 80s, so I think it was a big deal. If somebody's like, I'll give you 10 cents a mile. Like, you know what I mean? Like, oh, okay, I'll ride 10 miles or give me $1 like, that was kind of like that. And went to the park. Park had a bunch of hills, and my cousins and I rode 30 miles in this this thing. And I was like, really proud of myself. I was like, wow, that I didn't find it to be difficult All, all, you know, just great. And then later that night, I was to spend an evening at my cousin's house. And I wish I knew how old I was, but, you know, probably 12. Like, they're, like, in that age range there, you know what I mean, my aunt was, like, you know, like, you know, time for you guys to get cleaned up. Got to get a bath or whatever. Like, you know, so, like, I got a bath, and while I was in the bathtub, every muscle in my body froze up. It remains to this day, one of the most painful things that I can still recall, and that's why I don't like to exercise. I just that's my whole story. I had gone from how you say not that active to incredibly active in a five hour period, and it was apparently more than my body cared to do, and so I just everything froze up like a rock. It was horrifying.
Kylie 38:20
Always seems to be someone on rides that, like, will be going for a long distance, and they're like, Yeah, I've never ridden before and but, like, I'll just do this. I was like, All right, well, good luck. Like, that's, you're probably going to be in a lot of pain by the end of this, but we'll get you through it.
Scott Benner 38:39
Yeah. I was not okay. I just want to say, and also, it was that time of like, like in the world where I know that this is crazy to people, but there weren't even a lot of like over the counter pain medications. Do you know you mean, like, Yeah, I think we had buffering. Does anybody remember buffering? I've never heard of that. Look at you showing off, not being old. Do you think people right now are like, I gotta stop listening to this podcast. He said buffering today, and I don't know what he's talking about. I'm gonna pull it out. It might still be. It's not still available, is it? Oh, you can still buy this. They're calling it an NSAID. Now it wasn't an NSAID back then. Was it? Do you wanna find out together? They're calling it a what an NSAID, like a Advil. Oh, okay, look at you. Do you not know NSAID? No, you never get an achy, an alley or anything like that. If
Kylie 39:32
I have a headache, I take like Advil or Tylenol. I just hadn't heard that term before.
Scott Benner 39:39
Buffering was recalled in 2012 was a preventative measure. Everything's fine. It looks like it's been passed around a little bit. Looks like Novartis had it for a while. So is it just like a brand name or? Yeah, it was a brand name, like, literally, when I was growing up, there was aspirin and buffer, and if you had a pain, they gave you one of those things. There was no like, Ty, like, I don't remember Tylenol, or maybe we were too poor for Tylenol. Can you imagine what an episode name that would be, by the way, too poor for Tylenol. I feel like that if I ever do the podcast, if somebody interviews spam, like, can we call it too poor for Tylenol,
Kylie 40:16
please. That's one thing that, like, I just definitely didn't realize how much it costs until I, like, was actually going out and, like, buying Advil and Tylenol on my own. I thought this would be like five bucks, but, like, it's like 30. I'm
Scott Benner 40:29
enjoying watching my son, like, like, be an adult now, and, you know, having to go get something, he comes back and he'll ask, like, you know how much this is? Like, oh, yeah, yeah, I know. Don't worry. That's why. That's why you see me crying all the time. Oh, my god, yeah, it looks like it original formation of buffer and contained aspirin, magnesium carbonate and calcium carbonate. So it kind of helped people with stomach irritations, neutralizing stomach acid and for pain relief, and they called it for an anti inflammatory fever reducer. But that was, that, was it anyway. What I'm saying is I was in a ton of pain, and I don't think that buffer was gonna do and yet, that's what they were feeding me. Like, here, take a buffer. And I'm like, awesome. It was, like, my personal equivalent of, you know, I don't know, being shot in the Civil War, and then being like, here, chew on this thick while we cut your leg off. Awesome. Thanks. It's not helping. Anyway, I'm so sorry you married, engaged. Oh, congratulations. Thank you. Coming soon or No, it'll be like, just in like, 10 months. Ish, 10 months, about a year from now. Yeah, time to back out is what you're getting for you. Yep. Did you say yes under duress? Were you like, all right, I guess so.
Kylie 41:56
Or there are a lot of people around, I kind of felt some pressure. So, you know, do you hate
Scott Benner 41:59
those videos as much as everyone else does. Like, you're like, I don't think she wants to say yes to, oh God. Like she's gonna there
Kylie 42:06
were, yeah, I just whenever there's, like, a ton, like, it's at a stadium where everyone's watching, that's just gotta be the worst feeling. Like, I don't like the attention on me. So if there were that many people around, that'd be, that'd be bad.
Scott Benner 42:19
You would not be looking to be on the jumbo trot. I like it. I love when the girls have the nerve to be like, No. Like, 70,000 people are watching. Like, why did you think this was a good idea? I barely know you get away from it. I always assume a lot of them just later go, like, look, I said yes, because, like, your mom was there and people were yelling, but like, I'm not up for this. Like, so yeah.
Kylie 42:36
Like, I didn't want to embarrass you in front of a whole stadium full of people. Like,
Scott Benner 42:41
did your man do the thing? Like, did he set it up? Were there friends there videoing? Or did you do it more like a human being? Yeah,
Kylie 42:48
well, it was kind of like, so my parents were in on it, and so it was actually at the end of the breakthrough T 1d ride last year. Oh, so we had just biked 100 miles, and then my parents had the ring, so he didn't have to keep that with him the whole time. Then he proposed after we crossed the finish line.
Scott Benner 43:11
Oh, so there's a sweaty photo of you somewhere looking happy.
Kylie 43:14
Yeah, it's far enough away that you can't tell how sweaty we are. But
Scott Benner 43:17
How long had you guys been dating? It was like a year and a half. Ish, nice, but you're in your you call yourself your late 20s. Now, how do you characterize it?
Kylie 43:27
I'd still say mid 20s. I feel like mid 20s is like 2324 to like 2627
Scott Benner 43:32
Okay, we're gonna call all the way to 27 mid 20s.
Kylie 43:37
I don't know. It's hard. You gotta divide by three. So that makes things weird, that
Scott Benner 43:41
as you get older, it'll become very valuable. And you're like, Oh, I'm not almost 60. No, I'm asking not because I'm like, trying to do, like, this is your life. But like, Are you the diabetes piece of it? Is it a thing he just was good with right away you're comfortable with, because it's got to be part of your consideration when you're going to marry somebody, right?
Kylie 44:01
For sure? Yeah, he had no idea what type one was when we first started dating, he didn't seem too phased by it. I don't think I should have asked him if what his initial thoughts were. He's obviously learned a lot, and now, like knows, I make him get me my low supplies. If I'm too low or anything. Are you just
Scott Benner 44:20
getting married so someone can get you a Juicebox in a situation you're like, Finally,
Kylie 44:25
yeah, it's very useful. I would would recommend,
Scott Benner 44:29
oh boy, I need gummy bears. I was rubbing hard in his head. We were watching TV the other night. She said, You rub my head. I was rubbing my head. And she goes, I'm gonna have to marry somebody if I need my head rubbed my entire life, right? And I said, you know, I mean, I'm like, I don't know how much longer I can do it for you. And she's like, you could see her get, like, really thoughtful. She's like, all right, maybe I'll let one of these boys talk to me. Oh my god. But like, how well could he run your insulin? If you could, you look at him one day and just. Go, you do it today. Could he do that?
Kylie 45:03
No, no. That's funny that you say that, because I actually just, like, last week or two weeks ago, I was like, Can I teach you how to do this? So if I just wanted a day off, like, you could do it. I didn't have to think about it. So we're something that I'm gonna teach him, but he understands the general concepts, but I don't know how much he won't be able to run my pump, for sure. I
Scott Benner 45:24
want to teach you how to do this. Also, I don't like the way you grocery shop, but we can fix that. Do you have a list of things in your head that he's doing wrong that you would like to get
Kylie 45:37
straightened out? No, the only thing is, he doesn't close the cabinets in our kitchen all the time, like he'll grab something out of it and just leave the cabinet open. Oh,
Scott Benner 45:45
What a bastard.
Kylie 45:48
He left for work. He had like, a work event where he was they were doing, like a game night, and he was grabbing games out of our cabinet. I was somewhere else, and I came home and it the game cabinet was left open, and I just sent him a picture, and it's like, really,
Scott Benner 46:02
it's awesome. I didn't know you were Catholic.
Kylie 46:05
I'm not. I was Catholic until like, second grade.
Scott Benner 46:09
It's okay. I feel like I still I think I'm right. I love the the photo sending, like, See, I didn't know it
Kylie 46:16
was more just to tease him. I didn't really care. No, of course, like we talked about it the day before. Yeah,
Scott Benner 46:22
it's just a teasing thing. Everything will be fine. Guys, go ahead, get married, it'll be all right. And by the way, on the other side, girls, we're horrible, and we will ruin your life, just so you know, I didn't want it to sound like it was just a one way street, but that's okay. So you would like him to understand more, but for your own comfort, not because of safety or anything like that. How was he with low blood sugars?
Kylie 46:43
Well, the safety is part of it too, because I've heard so many, like, horror stories now from your podcast of people in the hospital. I was like, I need just in, in case anything happens. I need someone to be able to run this and like, at least keep me stable throughout something. It doesn't have to be great, but at least don't let things go horribly. Which story
Scott Benner 47:05
sticks out in your head? Because one just jumped into my head and I am and I think this is well documented, the worst person to ask about the podcast, because I'm making it so quickly I don't remember it as well as I should sometimes. But like, do you remember the girl who had the seizure and her husband just left her in the bedroom all day.
Kylie 47:20
Oh, yes, I remember that. Yeah, I don't think he would do that. No,
Scott Benner 47:24
and he did not think he was doing anything wrong. Like, he's calling his he's he did all the right things, like, called out from work. He's like, Hey, I'm gonna stay here. She's having a problem. Blah, blah, blah. But he never really understood to the level that she was in distress. Yeah,
Kylie 47:35
I got food poisoning over Christmas, and unfortunately, like, right before, as I was getting sick, my blood sugar was low, but I did not want to eat anything. So he's like, where's your glue gun? It's like, I'm fine. I don't need that yet. I was like, just get me more sugar. You want
Scott Benner 47:51
to give him a little more context so he doesn't start stabbing you just because you're not hungry.
Kylie 47:57
I got the nose spray so he's, oh, doesn't, doesn't have to stab
Scott Benner 48:00
me the what did they call that? The back skin semi I just like it when people try
Kylie 48:08
to say it, that's all. It's been nasal spray, the yellow one,
Scott Benner 48:11
because sometimes people say back. Squeamy, I'm like, think you're over pronouncing that spelling.
Kylie 48:18
This is one thing I do wish that I had freshman year of college, because with a roommate that you've never like, you barely know or have never met, like, I still had the red box. And I was like, here's my glucagon. You should never, ever, ever have to use this. But in case you do, I need you to stab me while I'm unconscious. Take this powder, just shake it
Scott Benner 48:35
up a little bit, then inject this liquid into it. Now you want to roll that back and forth in your hand till you see the powder is gone. Okay, the powder going. Okay, the powder is going to see that. Now you want to stick this giant needle back into the thing. Now pull out all that stuff. Now get my pants down, if you can, please, and then just find a nice meaty part of my cheek and just jam it right. And then just inject the whole thing. And then see if you can stop me from biting my tongue until 911 comes. Thank you so much. I hope you have a great freshman year. My
Kylie 48:59
roommate. We're still friends. She has later admitted to me she's like, not gonna lie. That freaked me out a little bit, but I understand why you had to tell me, can you
Scott Benner 49:08
just imagine your first couple days of college? Some girl you don't know is like, Hey, can I show you this barbaric torture device and how it might save my life one day? But probably not. I also love that part where we all start going, listen, this is probably never going to happen, but just in case it does, please write down these 93 steps, yes, yeah. And how are you with needles?
Kylie 49:29
Yeah, I'm glad there's quicker and easier options for people now, because it's like, I I know how to do it, but if I'm unconscious, I am not any help. And whoever,
Scott Benner 49:39
whichever it is, whether it's GVO or the screen, squee the back squeamy, whichever one it is, like, I just think it's the delivery system so much better. It's awesome, you know,
Kylie 49:48
yeah, not having to wait for like, to mix things and like is, I think, key,
Scott Benner 49:54
yeah. I mean, I've told the story before, but Arden had a seizure when she was two, and my wife's, like. Make the thing. I was like, Oh, were you paying attention when they told us that? Because I stopped listening when the guy said, You're never going to need this, he said, You're never going to need this, I was in the middle of like inundation of like information. I was like, Well, I'm not going to start remembering the things I don't need like, because I'm having enough trouble remembering the things I do need back then. I was like, I was not good at the carb ratio thing. You know what I mean? Because we used to have the math that, like, you'd be like, this is 20 carbs. Then you do the math to figure out your, you know, whatever. And Scotty wouldn't credit that. So
Kylie 50:31
when Arden was diagnosed, did they, like, tell you everything at once, or was it over the course of, like, a couple days?
Scott Benner 50:36
It's like, four days in the hospital,
Kylie 50:38
okay? But yeah, because for me and for a lot of the kids in my area who were diagnosed, they did it, like, as steps. So, like, they're, like, six classes, and they all sucked. They were just really long and boring. And, like, first day, we didn't even learn about carb ratios. We just were they're like, here's an insulin pen. This is how you use it. Like, I don't actually remember what we learned the first day, because it wasn't carb ratios. We just taught, we were just learning, or taught how to give ourselves shots, or our parents to give ourselves shots,
Scott Benner 51:10
inject it into a towel or an orange or banana or something like that. Like, so you know how to do the shots. And then here's the math of the carb ratio, and here's what a carb is. And, like, all, that stuff. Like, I know somebody right now, personally who's in the middle of a diagnosis, like an adult diagnosis that's not a quick onset. It's interesting for me to see the feedback from like, oh, today they made me go to a GP, and the GP said, Maybe this. And like, you know, I said, I I'd like to go to an endo. And like, oh, we have a diabetes nurse practitioner on staff. And like, but, and like, and I'm like, go to an endo. Go to an endo. And then in the middle of it, they're like, they want to test my liver. And I'm like, your liver. I'm like, go to an endo. Go to an endo. And, you know, meanwhile, you know, I was able to get this person on a CGM, which is great. But, you know, like, I can see the excursions are getting worse at meals and, like, it's, you know, the resting blood sugars are getting higher. And I'm like, I keep saying to them, there's a sincere possibility that you could drift into this. And there's also a possibility that this could, like, light switch on you. And you don't want that to happen, like, and, and here's a list of really valuable endos. Like, you also don't want to get to a bad it's so hard Kylie, to explain to a person who's never had you know, a bunch of health issues that every doctor you call is not going to be the best one they think they are. It's interesting because they've never gone to doctors like this before. They're like, well, I got, we got in with our GP, and I'm like, I actually said I'm like, I have a very successful podcast. Because doctors don't understand diabetes very well. Some of them do. Here's a list of them get in with one of those, you know, and they don't feel my level of insistence, because they just think it's going to be okay. No matter who they talk to, it's really it's really interesting. So you have to watch them go to a meeting and then come back and go, Hey, none of that made sense. And I'm like, yes, because that person doesn't understand, but they're willing to see us. I'm like, oh, yeah, that this person will be very willing to kill you. They don't even know they're not doing it right. Like, that's how crazy it is. But this doctor does know go to this one, but to watch people not be able to properly advocate for themselves right away, because it's socially not polite. It's interesting. Like, I didn't, you know, I'm not built like that. So, like, it's weird for me to watch a person who is but they're like, well, they said we should try this, so we're going to do that, because that's what they said. I'm like, no, never go back to this person again. It's important to note that these people genuinely believe that I know what I'm talking about, and they still are having trouble doing it. It's interesting. Anyway, I feel bad when people are
Kylie 53:46
diagnosed. Yeah, even when I was diagnosed, and like, we knew what I was going in for, we got to the hospital and they pre took my blood sugar, and it was, honestly, it was in the 1000s or something. It was really high. And, like, once they took me back to room. So they're like, so what are you here for? Like, why do you think you're type one? Like, just you took my blood sugar. Like, you know, my blood sugar is incredibly high. Why have I had to tell this to four different people? Now we
Scott Benner 54:11
all think I have type one because of that number on the piece of paper right there. And you know that, right? Because you went to school for this. Like, please, please. And, but my point is, is that when it's, ha, you knew because you had a family member, right? But, like, but people who don't know, people who are just like, hey, I got this diabetes thing crazy, like, they don't know to say. They don't even know what the number means. So they don't know what to fight for. They don't know when to be concerned. It's a significant hole you're starting in, yeah, because
Kylie 54:41
if, like, I feel like, if I just had the number and no one, like, told me anything, I'd be like, Well, I feel fine for the most part, like, I probably don't have to go to the hospital right away. Like, but because I was told I had to go to the hospital and say, All right, I guess we're going to the hospital. That
Scott Benner 54:56
is exactly what I see happening right now with this person. Like, I. Know that they're they're not feeling sick like so far, they've lost weight, you know what I mean, and it wasn't weight they should have lost. So like, they know to be concerned about that at least. But they're not stumbling around sick. They're not well. How do I mean this? They're not in a situation that they would classically have thought of as sick in the past. So they don't see the NES, like, the immediate necessity of it, yeah? So, yeah, I don't know. I just, I find it upsetting, because I want to be like, listen, I actually have said, like, just listen to me and go do this thing. And I think they're up to doing that now, which is awesome, but we've been at this like, three weeks. Yeah,
Kylie 55:37
you shouldn't have to keep telling people, like, this is what I think but and then other people keep saying, well, it could be, what if we do this instead?
Scott Benner 55:45
But I want you to keep in mind that without me, they'd be three weeks into it having only seen a GP who told them, like, Yeah, we should test your liver here. Like, that's the extent of what's been said to them so far. You know, anyway, yeah, it's always
Kylie 55:59
it frustrates me, because I was like, I feel like it should be so easy. Just look at their blood, look at their antibodies. Like to me, it just seems like a quick thing to even if it's not the issue, it's a quick thing to check off the list to make sure it's
Scott Benner 56:11
not. Well, listen, if you think it's frustrating from your perspective, or if I think it's frustrating from mine, you should see what happens when actual endocrinologists who know what they're doing, who I know personally will send me like, stories of people's diagnosis, like privately. And I know someone, oh, sorry, no, no, just how frustrated they are with other medical professionals.
Kylie 56:34
I know someone who was diagnosed by their eye doctor because she'd been losing weight and, like all the classic symptoms, her other doctor, or wherever she went, had had done a blood draw, and, like, tested every supposedly tested everything, and couldn't find anything. And then she finally went to an eye doctor because her vision was getting worse, and this is Second hand information, but had like, sugar crystals in her eyes and or could see, like, the retinopathy or something, and that's how she got diagnosed. Yeah? And
Scott Benner 57:04
the other doctor was never going to do anything. It's fascinating. Yeah, yeah, no, no, listen, I don't know everything, but I was able to diagnose a person over text messages that two weeks later, their doctors hadn't told them they had diabetes yet. And I was like, No, this is type one. They're like, Well, finally, they're like, well, they're telling me it might be type two. I'm like, It's not type two. And I was like, just get this test. Like, I finally was able to get them to get a gatta, anybody test. And I was like, just, please, just make them force them. Like, I know, I know you don't know why. Just don't leave without this one blood test. And they were doing they did that, the test came back, and I said, Yes, this person has type one diabetes. Well, they gave him Metformin. I was like, awesome. It's like, you can take it if you want. It's not going to do anything. So anyway, what a tangled web we weave. Okay, so we're up on an hour here. Kylie, is there anything we haven't talked about that we should have? Anything I missed didn't bring out of you something you wanted to say that you haven't said? I don't think so. That's it. We did it.
Kylie 58:05
I think we covered everything.
Scott Benner 58:07
You've listened to a lot of the podcasts, huh? I have, yeah, can you tell me what you like about it? Don't kiss my ass. Just, I want to know. I just genuinely want to know what you like about it. No, I just
Kylie 58:19
like, even outside of the diabetes stuff, I feel like people always have interesting stories, or like, there's always, in almost every episode, there's something that I find entertaining. Like, either someone just comes out and says something completely wild that like you would never expect, and otherwise it's just like fun interactions and just everyone's perspective. I feel like is valuable, yeah,
Scott Benner 58:46
like my father, who is a preacher, we learned like to go to S and M dungeons, stuff like that.
Kylie 58:52
That one didn't think I'd be hearing that on a diabetes podcast, but,
Scott Benner 58:57
but then in Mountain House, you heard it. I did, yes, yeah. The amount of times that I've sat forward at this desk and gone, what'd you just say? Hold on a second.
Kylie 59:09
Yeah, I don't think I've got anything crazy that would shock you like that. So
Scott Benner 59:14
I was diagnosed on a heroin bender. I climbed out the window of my grandfather's house and was running around the streets wildly looking for heroin when the DPA took over. Awesome.
Kylie 59:23
I think about that episode a lot like, I hope she's doing well. Now I think
Scott Benner 59:27
about her too, just so you know, from crazy like that to like, funny to like, just downright horrifying sometimes, you know, like, really, yeah, people's stories are interesting.
Kylie 59:40
I'm very thankful I was not in some of those, like, scary diagnosis situations, like some of those stories, I'm especially from a parent's perspective, just would be or just anyone you know, just watching someone go through that would be terrifying.
Scott Benner 59:56
Yeah. What's your diet like to the stripper? Most? Mostly Jack and Coke. And I was like, is she What is she saying? Is she being funny? She's not being funny. That was, that was basically her, you know, like she, she sticks with me a lot too, because many, many, many, many, months, if not years later, she sent me back a note and said that she finally listened to herself on the podcast and recognized her as not a person she wanted to be, and made a lot of changes in her
Kylie 1:00:23
life, which is, yeah, that's awesome match and crazy that that's kind of how it played out. But I was just trying
Scott Benner 1:00:29
to get the idea of, like, how do you eat, so I could understand her blood sugars. And then she was like, oh, basically I exist on cocaine and Jack Daniels. And I was like, oh, okay, I really did. There's a lot of times Kylie and I have not known what to say next. Whenever you hear me say something really bizarre, it's just because my brain's going wait what
Kylie 1:00:48
I have that too, where it's like, I sometimes just have to tell people I don't know what to say to that. Like, really, that's okay. I didn't expect you to. I was like, okay, cool. Because that was out of nowhere.
Scott Benner 1:01:00
You've exceeded what my data set understands, and I don't know what to do next. So I've learned a lot. Like having these conversations, and it's funny because I sometimes I try to say that to my family, and they make fun of me, like, Hey, you have a podcast. And I'm like, I don't think you understand. Like, and they're not gonna listen, because it's me, you know what I mean, like, that'd be the strangest thing. Like, did you really know a lot about your dad's work growing up? And it's just like, sometimes I'm like, no, like, I have this understanding of something, and, you know, based on the countless people who have said this to me, you know, and, and it's interesting, because you start, you know, people's stories singularly are very interesting. But then when you start hearing them over time, and you and you see similarities in how people think, you can start to really step back and go, Oh, I know why I do this. Like, you know, I've heard enough people say this now that, like, I can now figure out a thing that I didn't like previously even understand. And I think it's awesome. Like, I really like it. I'm glad you like it,
Kylie 1:02:00
too. Yeah, the one thing that I can't this was fairly early on when I started listening, either I had gone back and listened to an older episode or, like you had just said it. The one thing that like made the biggest difference in my management was you said, like, to set your high alert, to be like lower so you could catch it before you went high. And I just kind of sat back and was like, that is the easiest thing I've ever heard. Why didn't I think of that? Like,
Scott Benner 1:02:27
that's such a great example of, like, when I'm like, Wait, that helped you. Like, you know, we just put together the small sip series with Jenny. You know, it's been a while. I mean, we've been working on it for a long time. But some people complain they don't like long form content, which is tough, because, I mean, it's kind of what I do. You know what I mean? And if I just came up to you out of the blue right now, just sort of a regular person, like somebody who wasn't doing this every day, like I am. And so me at the beginning and said, Look, just these things that you say, like, just say them real quickly, in five minutes, but make sure it's very actionable and understandable and not confusing. I would not have been able to do that. I've been, I would have been confused by that. But I've honed this over time, right? Like I am at the point now where, if you like, blurt something diabetes out at me, I can blurt something valuable back out at you, right? And so I've been watching for years, while not a large group of people, but, you know, a semi, you know, a semi, reasonable group of like people in the in the Facebook you know group are like, Hey, I can't listen to long form stuff, or I have ADHD, it just doesn't work for me. Or I don't learn by listening like that kind of stuff. My kids aren't going to listen to a whole hour. Like this episode of The Pro Tip series is awesome, but I can't get my kid to listen to it. And for years, I would think, like, I know I can get to a point where I can do it shorter, but I had to have enough practice and experience talking about it that I could get the idea out more quickly. And then as I was kind of honing that skill, it became obvious to me by listening to people that I didn't always understand what was valuable for them. Like, I'll tell a big, long story. You pull a piece out of it. Who knew it was going to be set a lower alarm? Like, do you know what I mean? Yeah, because I'm lucky enough to have that big Facebook group, which, by the time your episode comes up, there'll probably be like, 61,000 people in that group, or something like that. So I was able to go to them, because there's such a big community now, and lovely and all, and say to them, anything I've ever said in the podcast that was valuable to you, tell me in this just tell me in here. Like, and I don't mean like, I mean you can say it was this episode, like, that episode, great. But if there was a thing that was said, like a T shirt slogan that was brought up, or something like that, like, say it. And we got enough people, actually, we got a ton of feedback, which was awesome. And what we were able to do is take all the feedback and then go back and basically collate it and go, Okay, well, 14 people said this, but 75 people said this. And, you know, almost everyone mentioned this piece right here. So we took all of that, smashed it down. Into those sayings or those thoughts. Nico went back and Nico's the person who helps me with the Facebook group. So basically Isabelle took all the stuff and collated it down so that we had it into sections, categories, and removed duplicates, but knew how many times somebody had said something. Then Nico went back into the podcast and found the places where I said it. Then I was able to go back in and listen to it, and then Jenny and I were able to sit down and make five minute episodes that, like, really drilled down on this stuff, and they've only been out for a couple of weeks, and they're actually not even all out now. They will be by the time somebody hears this, and I'm already starting to get crazy good feedback from it, from those people who just can't listen through the one or two things that come up in an episode with like, wow, that's really valuable for me, that process had to happen to get to that. I don't know why I'm bringing this up, other than I watch a YouTube channel where a guy builds like bivariums. This is very strange. These are very popular, so I don't I don't feel bad saying this like because I think this is a thing a lot of people do, but what I noticed recently is that this guy has been at it for so long, and he was popular the whole time, so he was able to keep doing it. He was able to turn it into how he made a living. And because of that, now you're seeing videos that aren't just him building a vivarium. It's him building it with 10 years of experience, or he'll be able to do a follow up thing where you go, Oh, that's awesome. I'm so glad to know this follow up thing, this thing that he learned, but you realize that if he had just started making the YouTube channel, there's no way he would have even known to say that. And I feel lucky to be in that position now, where this thing is has been popular enough that I can continue to do it, so that we can start, like, literally going back into the podcast and mining it to learn how to talk to new people. I'm sorry I went on for a while there, but I've been thinking about that for a while. No, you're good. Thank you. Ali is like, Oh, I was wondering if this would happen during my
Kylie 1:06:58
episode. No, I did just have to go and look up what a vivarium was. I thought I knew what it was, but I had to confirm. Oh, what did you figure out it was? Oh, I knew the I knew what a terrarium was. I figured it was something similar.
Scott Benner 1:07:10
It's all the same. It's a big box that has, like, living stuff inside of it. Very, very pretty. During this conversation, at one point, a small dinosaur was staring at me from a large box with like, for a while we were talking. It happens every once in a while, he is looking at me like, you should go get a roach and bring it over here and give it to me. And he just stared at me for a long time until it got uncomfortable. Like I looked away. I was like, I know you're hungry. I'm so sorry. And I overslept today. Is the Absolute Truth, by the way, I was a little sleepy last night. I think I had a cold, in case anybody cares, and I I slept a little longer than I meant to. Normally, I would have come in here and got, like, these guys settled, and then I would have started, but instead I came in, they were all like, oh, the man is here with the bugs. And I was like, nope, making a podcast. They were like, what? So anyway, the big one is literally staring, looking at me like, what's going on, man? And for anybody who doesn't know, I probably should have said bug and not Roach, because now you're freaked out, but not the roaches like you're thinking so different roaches, special ones, yo, yeah, they can't fly. That's really a big deal. They can't climb out of a plastic tub, and they can't fly. So they're, they're, they're pretty perfect for this. Anyway, I really do appreciate you doing this and letting me babble at the end. So thank you very much. Yeah, thanks for having me. It was a pleasure. Hold on one second for
Kylie 1:08:35
me. You are done
Scott Benner 1:08:42
the conversation you just enjoyed was brought to you by us. Med, us. Med.com/juicebox, or call 888-721-1514, get started today and get your supplies from us. Med, I'd like to thank the blood glucose meter that my daughter carries, the contour next gen blood glucose meter. Learn more and get started today at contour next.com/juicebox and don't forget, you may be paying more through your insurance right now for the meter you have then you would pay for the contour next gen in cash. There are links in the show notes of the audio app you're listening in right now, and links at Juicebox podcast.com to contour and all of the sponsors, a huge thanks to Omnipod, not just my longest sponsor, but my first one. Omnipod.com/juicebox if you love the podcast and you love tubeless insulin pumps. This link is for you, omnipod.com/juicebox, I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. The podcast contains so many different series and collections of information. Information that it can be difficult to find them in your traditional podcast app sometimes. That's why they're also collected at Juicebox podcast.com go up to the top, there's a menu right there. Click on series, defining diabetes. Bold beginnings, the Pro Tip series, small sips, Omnipod five ask Scott and Jenny, mental wellness, fat and protein, defining thyroid, after dark, diabetes, variables, Grand Rounds, cold, wind, pregnancy, type two diabetes, GLP, meds, the math behind diabetes, diabetes myths and so much more. You have to go check it out. It's all there and waiting for you, and it's absolutely free. Juicebox podcast.com the episode you just heard was professionally edited by wrong way recording, wrong wayrecording.com. You.
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