#1188 Glass Half Positive

Megan and Kevin are the parents of a child with type 1. Kevin also has type 1 diabetes.

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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 to episode 1188 of the Juicebox Podcast.

Today I'm going to be speaking with Megan and Kevin. Now Kevin has type one diabetes. He's had it actually for 40 years since he was eight years old. And now, Kevin and Megan's daughter, Lily, who is four has type one as well. This episode is a terrific opportunity for you to hear a husband and wife team talk about type one diabetes from different perspectives. 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 health care plan or becoming bold with insulin. Hey, do you have type one diabetes? Or are you the caregiver of someone who does? Are you a US resident? If you are those things, please go to T one D exchange.org/juice. Box and complete the survey. That's all I need you to do. And you will have helped type one diabetes research. T one D exchange.org/juice box. 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. If you'd like to wear the same insulin pump that Arden does, all you have to do is go to Omni pod.com/juice box. That's it. Head over now and get started today. And you'll be wearing the same tubeless insulin pump that Arden has been wearing since she was four years old. This episode of The Juicebox Podcast is sponsored by the only implantable sensor rated for long term wear up to six months. The ever since CGM. Ever since cgm.com/juice box. An explicit version of this episode is available exclusively to Apple podcast Premium subscribers.

Megan 2:16
Hi, I am Megan. I live in North Carolina and I am the mother of a four year old who has type one. And the wife of a an adult who has type one, I

Scott Benner 2:33
thought you're gonna say an adult who acts like he's four years old.

Speaker 1 2:37
Well I do feel like sometimes I have four children instead of three. But I'd still love him. And that that is kind of why we're here today. To

Scott Benner 2:50
let us know that you still love Kevin. Ah,

Speaker 2 2:53
yeah, that's that's good to hear. Yeah, that affirmation is always

Scott Benner 2:59
appreciated. Kevin, you have type one diabetes for how long? I

Speaker 2 3:02
have. I've had it. So I just turned 48 I was diagnosed at eight years old. So I'm 40 years strong now. That's pretty cool. Yeah. So I've seen quite the the evolution over a long period of time and both sort of health treatment is recommended. And just that you know, the technology growth. It with this disease. It's been quite crazy to watch

Scott Benner 3:28
a massive Yeah, massive change. Hit. Can I ask Can I ask a question? Just jumping right in for a second. Kevin? You have two kids. It sounds like right. Three. We have three? Yep. Oh, I'm sorry. She I'm sorry. I counted her when she was like four. I don't know why I did that. I have four

Unknown Speaker 3:43
kids. Yeah. So you can Kevin

Unknown Speaker 3:46
is yeah, I'm the I'm the fourth. So.

Scott Benner 3:48
So three children. One of them has type one. He's he or she I'm sorry. He she she Excuse me? Our

Unknown Speaker 3:55
our youngest daughter. She's four years old. Okay.

Scott Benner 3:58
Yeah. So you've got two older children. It doesn't happen until your third kid. How old was she when she was diagnosed? to two. So this is two years ago. You're so Kevin, this is my point. You're 46 years old at that point, you know, 38 years into having diabetes. Did you ever think your children would have type one? Well,

Speaker 2 4:17
we it was always in the back of our mind, because I know just in my line of work, I do work in the research area. And, you know, I know how to read some medical literature. And so I think, you know, while the overall chance is still pretty low, you know, I think if you you know, if you have a parent that has type one, I think your you know, the chances that your child is going to have it is still is still going to be statistically you know, higher than if you if you didn't have it yourself, so it was always kind of in the back of our mind. I think what surprised us the most was that it was our young Just and not our middle child or boy, we were kind of expecting Alex pockets. If it's gonna happen, it'll be him. Yeah, he's looks exactly like me were they were basically the same, I think it tends to be a little bit more common boy. So we sort of always, if it was gonna happen, we thought it would be him. And it could still could be who knows? I don't want to jinx him. But we were just surprised that it was it was her. Yeah.

Scott Benner 5:28
How did she present? It

Speaker 2 5:32
was, you know, kind of typical, you know, we noticed that she was just thirsty, and go into the bed, go into the bathroom a lot. And we I think we did catch it very quickly. Because, you know, we knew there was problem when she was getting up in the middle of the night and asking for water. And, you know, the first time she did that we we finger checked her immediately and found out.

Scott Benner 6:00
So Megan, do you have the same feeling about wondering if the kids would have diabetes? Like is your you know what I mean?

Speaker 1 6:08
I don't I before this, probably not so much. I actually will say I really surprised about how little I knew about diabetes, even being married to somebody with it before all this so no, I mean, I guess it was always sort of in the back of my mind a little bit. I do agree with Kevin, I thought for sure. happened to one of our older too, probably our middle son. I do remember asking all the time at the pediatrician like what do you think my husband's a type one? And she would say, I think you're okay. I mean, we see it in families, but usually, I don't see it so much in father daughter, Father, Son, I'll see it in like, you know, Uncle cousin sort of situation. So I don't know that I was incredibly worried about it. I probably wouldn't have married Kevin, if I was that worried. No, just kidding.

Unknown Speaker 6:58
Gee, thanks,

Scott Benner 7:00
Kevin. I'm actually interested in that, like, so. It's too late. Now you guys are like, I mean, you're in your late 40s. But he been married for 20 years. When he was younger.

Unknown Speaker 7:12
I got lucky. Hold

Scott Benner 7:13
on, hold on. I didn't know Meghan was a trophy. Meghan, congratulations. First of all, Kevin, congratulations to you. This is lovely. Did you trick her or get her with money and goods? How did this go? Yeah,

Speaker 2 7:24
I think it came down to like she's saying she just wasn't that like aware of it. And it the other thing, Scott, too, is like for me, you know, just as background on myself, I maybe there's some favorable genetics or whatever. But just over the course of the years, I've I've had a pretty easy time with diabetes. My a one C's have always been great. And it's never really like afflicted me. At least not not yet. And so, you know, when she meets someone like me, you know, it's there's nothing really outwardly that's different, or that's, you know, that overwhelming in terms of how I handle it on a day to day basis. You know, she took my word that it was I've got everything under control. It just wasn't a big deal. Yeah, in our conversation, I lied

Scott Benner 8:18
to my wife a lot to when I was dating. I told her. Yeah, I was like, Oh, I

Speaker 1 8:23
mean, I I will say like the whole No, no, Kevin, I don't know, Scott, you talk a lot sometimes about, you know, the psychology of things and perspective and things like that. And, you know, it's interesting, because I think Kevin is definitely a glass half full type of person, and I am definitely not, I am half empty. So he always really didn't really dwell on diabetes, or it's holding me back or like, you know, I so I just, I never really thought much of it. I kind of just thought I handle it doesn't seem like such a big deal. Because his perspective has always been really positive, which is great. Mine isn't positive at all. I mean, it's taken me two years with our daughter having it to finally be like, Okay, I guess this is fine. Yeah. Well,

Scott Benner 9:11
listen, first of all that dynamic keeps the world moving. Because that that little bit of anxiety that you feel as a mom, that's what keeps everything going. Yeah, yeah, I'm positive that I would still be in my mom's house. If it wasn't for Kelly, I'd be like, this is fine. You know, Kelly's the one that was like, No, we need to do more. We have to go through this now. And I'm like, Okay, if you say so. You know, and guys, I think, you know, obviously, an incredible generalization, but that idea of like, just like we'll just run forward and make something happen. It'll be okay. You don't think

Speaker 2 9:43
yeah, I also think part of the just the, the outlook of, you know, the positive outlook on it. It it also comes partly from just being diagnosed as a as a child. You know, eight years old, it's, you know, you don't really you don't have I've kind of the, you know, the, the worldly concerns, and at that time social media did not exist. And it was, and I had a mother who was very task oriented. And, you know, once we got the system down, that was it, it was it was just, you know, it was a part of daily life, a part of your tasks each day. And, and I think, you know, while you know, having a two year old diagnosed for us, that definitely sucked, you know, for her, you know, I think the blessing is that, you know, it's, it's always going to be, she's never going to remember not having it, it's always going to be kind of part of her daily life. And I think I think that's gonna help her later, she, I think, will have less tendency for that, like that rebellion against diabetes, because I never had that I never like

Scott Benner 10:49
you're actually incredibly fortunate. You probably don't see it this way. But if you were diagnosed 40 years ago, management was nothing less you probably did an injection once or twice a day, right? Yeah,

Speaker 2 11:00
the mental load at that, well, just the load in general at that time was nothing. It worked more like, you know, just taking a prescription. You know, you take a pill a day, a couple times a day, and you all you only you checked blood, your blood sugar, like three times a day, you know, breakfast, lunch and, and dinner and you took your shot twice a day, basically. And you just stuck to the script, right? Somehow I always managed really good a onesies, but I have no idea what my blood sugar was doing in between.

Scott Benner 11:33
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Speaker 2 12:50
say to like, I think, you know, what, as I moved later, you know, once I got into my 20s, and you really, you know, had to, you kind of take more ownership and control it myself. I started finding myself, you know, a little bit at odds with the doctors that I had, because I think even to this day, out of the treatment approaches are still too conservative. And, you know, for many years, even before CGM came out, I was essentially do trying to do what the CGM is do now I, I found I switched over to just being followed by my PCP at that time, who knew diabetes, and he would prescribe for me like 400 test strips a month, and I would check check my blood sugar like 15 times a day. And that's how just, you know, I just manually kind of knew what my trends were all the time. I think that helped a lot. And I was I was aggressive with my insulin. And I think those that period of time is, I think, really what I helped me,

Scott Benner 13:58
it's all fortunate. It's all very fit your personality works that way and everything else now. Megan, I have a question. After your daughter gets type one, how far into it when you start really understanding what's happening to her, and like, how her body's reacting and what all the variables are? How long until you take a quiet step back and think oh, my god, is this Kevin's life? I had no idea.

Speaker 1 14:18
Yeah. Wow. I mean, I don't know. I mean, I did definitely think that at some point when I don't know because I feel like I was so far up my own. I mean, I was just I had a hard time when she was diagnosed with it. Yeah, I actually don't think it was till a while after where I started to think like, gee whiz, like, I should convey this to me. This is pretty raw up like, you know, and I'll speak to Kevin's mom and say like, Oh, my God, how did you do this? And to Kevin's point, I think back in the day, it might have been easier just because they didn't have the technology they have now but yeah, I mean, I definitely have had those moments where it's Crazy how just being the mother is opposed to the spouse, for me has been way more eye opening, you know? Yeah.

Scott Benner 15:10
Can I ask Kevin? Did she has Megan ever voiced that to you? Or is that the first time you're hearing that? I? Yeah,

Speaker 2 15:15
we've talked about that, for sure. And Megan has had those conversations with my mom, which I think, you know, even though it was totally different when my mom was first, your

Scott Benner 15:27
mom's probably like, why are you trying so hard? Just give them one shot.

Speaker 2 15:32
Yeah, but that, you know, having having my mom to go to I think, I think he helped her with that as well. And and again, you know, it's like, I've been very fortunate and lucky and well controlled. And so, I don't know, you know, for me, it's I appear more normal probably, to Megan, then then then then our daughter Lily does. So

Scott Benner 15:55
when you say normal, do you mean less intensive? Like concerns and cares because yes, yeah, right.

Unknown Speaker 16:02
Yeah. Yeah.

Scott Benner 16:03
What's your management style? Kevin, what do you do?

Speaker 2 16:06
So, you know, right now, you know, I have a, I don't really use any set formulas, I kind of, you know, I am still I am still on the the original Omni pod. Okay, so I'm not even moved to the dash yet. Which I'm kind of you will be soon. I know. I know. I don't worry. We've got like a six month stock. Yeah, I

Scott Benner 16:34
think December if I'm not mistaken, and December's the date? They're gonna start making them. So yeah,

Speaker 2 16:40
yeah. But it's, you know, I think it's, it really follows. You know, much of what you talk about on your podcast, just being really diligent about Pre-Bolus Eat for meals. And then the other part of that, for me is is not overdoing things on the carbohydrate side. You know, in particular, I think the last six months or so, I've kind of moved to a lower carb diet right and, and I made my last day one seed. Just I got it a week ago.

Scott Benner 17:09
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Speaker 2 18:35
Oh is 6.2 which is pretty good for you know, I'd like it a little bit lower. But I've managed that while reducing my insulin intake by quite a lot just you know by having a bit lower carb diet so you know, it's always a mental game. You know, as a diabetic you don't overreacting in either direction. If you're on a low or a high that that will put you on the roller coaster and that's you don't want to be on on that it's keeping an even keel is the key for me. Yeah. can

Scott Benner 19:09
eat up your whole day actually. Yep, it can. Yeah, yeah. All right. So you're using Omnipod? Do you have a CGM by any chance?

Speaker 2 19:17
Yeah, yeah, I'm on. I'm on the G six. I have had no problems with the G six.

Scott Benner 19:22
Yeah, we never did either. Yeah. We

Speaker 2 19:25
just put our daughter on the libre, which I think is a better device for various reasons. And I may switch to that at some. Okay.

Scott Benner 19:34
Yeah, absolutely. Yeah, I think you should use whatever works for you. Yeah, Arden's using g7. It's been fantastic. And actually, I'm going to put a g7 on this week, too. I'm going to try to I'm going to try to get my numbers and put them online for people. So they seem interesting. Yeah, it seems to be I'll tell you why it seems to be really helpful for people to see a person who doesn't have diabetes and Watch their blood sugar ebb and flow. I think it alleviates a lot of your, you know, the worry of you know, when you see 140 after a meal, you're like, oh my god, it's over. You know, you're like, actually, I think everybody's blood sugar does that. Yeah. You just don't want to be in a situation where, you know it keeps going up or doesn't come back down and you know, in a reasonable amount of time, etc. Anyway. Okay, so what about your daughter? What is she managing with?

Speaker 1 20:24
So Lily's on an omni pod? Lily's Billy's been quite an adventure for us. We got her on the Omni pod the you know, the original mine, we got her switch. This is why we're on your podcasts because you put a post up in the Facebook group asking if anyone had gotten their little ones, I think on an Omnipod. Five, and would you be interested in coming on the show? And I think I responded and you didn't have immediate openings. So you sent the link for I don't know if this was probably a year ago? No,

Scott Benner 20:52
I gotta tell you, I just put that link up again for people. And we're talking in August 2023. Right now, I already see stuff on my calendar for or excuse me, we're talking in October 2023. I'm already seeing stuff on my calendar for August of 2024. So Oh, my God, I'm sorry about that. But yeah. Oh, okay. Oh, great. Let's talk about that. Then. Your setup here is too interesting not to talk about for a little longer. Also, if one of you can say, oh, Lily, at some point, I would love to make that the title as a Munsters reference, but that's a long way to go. If one of you could like work that out for me the next half an hour. So thank you very much. Just go Oh, Willie, and then I'll be all set. That's a pretty name. Yeah.

Unknown Speaker 21:32
We have a lot of practice saying that.

Speaker 1 21:35
You do? A few. Yeah. Bad words thrown in there. No,

Scott Benner 21:39
I actually, Megan, you're interesting because you have that you have that North Carolina thing in your voice. But you came so close to saying I was so up my ass when Lily was diagnosed. And I was like, Oh, she wants to curse. I hope she

Unknown Speaker 21:52
I am from Long Island. Oh,

Scott Benner 21:54
I have it in me. Alright, let's go.

Speaker 1 22:00
Yeah, it's hard for me to hold that Kevin gets he gets annoyed with me because I do have a potty mouth. And so does our four year old because of it.

Scott Benner 22:08
Excellent. I love Lily now perfect. Yeah. Yeah. Okay. So I just want to dig a little farther into all of this. Because Megan's obviously I mean, you're describing yourself as kind of like shell shocked, you know, when Lily's diagnosed? And I'm assuming her care goes to you? Or does it go to both of you? Yeah, I

Speaker 1 22:26
mean, Kevin will Yeah. Now, come on. Let's be honest, though.

Scott Benner 22:29
He's got a swagger carbs and to like, throw some insulin out or be like, I don't know, that should work.

Speaker 2 22:34
It is interesting, even though I am the diabetic. And if I had all these years of experience it, you know, 100%, more Magan D deals with Lily much more than than I do. And she's like,

Speaker 1 22:48
I go out with friends. And Kevin's texting me, like, what would you Bolus are for this? Hey, she's got this iob she's going up? What should I give her? And I'm like, figure it out. Two years. My man,

Speaker 2 23:03
I think there's a good point there, though. It's like, you know, it is very different. The treatment course between like a toddler and an adult, that's, that's had it for years. Like they, they don't translate all that well, in some cases, you know, because Lily's got, you know, growth hormones going on. And it's just, it's so different. You know, either

Scott Benner 23:27
the child aspect to the adult aspect or one day, by the way, female hormones, and you not having ever dealt with that. But But moreover, what you're describing is the problem that we see in health care for people with diabetes, because, you know, yeah, have you ever heard that, you know, when people are talking about big monumental problems, they'll say, Well, the last thing that could help this is if a generation dies off, like the if the old ideas go away, and I think that you're still just see a blend of this in the world. Like there's, you know, like, nobody at this point should be telling you if you get low you should take 15 carbs and wait for 15 minutes. But yeah, that's the thing that said everyday to people, doctors offices, right. Yeah. And you know, like all of this stuff that's left over remnants of the past impacting now. And and you're in Kevin's in his mind's doing great, right. Like even earlier, he said, I've always had really good a onesies. And Kevin, I want to say this, I don't think a 6.2 is not a really good agency. But if you tell me you've had diabetes for 40 years, you're a low carb and you're a one sees not in the fives, I think oh, he doesn't completely get it. Like and then again, nothing wrong with a six two it's it's absolutely amazing. You should be allotted for it. But you know what I mean, though, right? Yeah. Well,

Speaker 2 24:40
to your point sky can give you a great example of what you're talking about. I've had in the in the last year. You know, I've also I've had a one sees in the high fives last year, I had an appointment with my Endo. I was going in with a 5.9 That was my reading. And I'm telling you this You're kind of like a kid that you want to come home and show show your mom and dad your great report card, right? Every time I have a one sees like that and go in to my appointments. It's it ends up being a struggle session going through the graphs and the lines nitpicking and picking apart the lows and how do we address the lows? And from my point of view, I'm willing to accept, you know, a little bit of risk and having some lows mixed in. Yeah, if overall, that's going to mean I'm on average, lower and I can achieve those types of baby onesies, I think, in healthcare, you know, the sort of your standard endocrinologist doesn't really get that.

Scott Benner 25:45
No, no, it's funny, isn't it a person now you have a child with by the way, what's Lily's height? One say? Oh, last

Speaker 1 25:51
one. Well, so Okay, so it's usually around six to but her last one, which we want to dive into with you was seven because of her CGM issues, which we can explain.

Scott Benner 26:03
But I was just gonna say, though, that Kevin, you're in the doctor's office with a six two had been a five, nine, very stable, right? You've had diabetes for 40 years. Your kid has diabetes, and still someone sits down to you and goes on August 15. At 3am. What happened? Yep,

Speaker 2 26:19
yeah, exactly. Yeah. And it's all about avoiding avoiding lows. And I think, you know, the care that is prescribed, even to this day is still geared more toward that. I don't know, if it's, you know, just a safety, liability, liability, they want to avoid liability. And I would also love to see more diabetics go into endocrinology as well, I don't think I've ever had an endocrinologist that has actually had diabetes, huge

Scott Benner 26:49
help. It is huge help actually have been booking doctors who have type one, but are in other parts of medical care for a series I want to do like next year. Oh, yeah. Where I want to, I want to have doctors that are in like, all different practices come on, and talk about what it's like to watch healthcare from their perspective.

Unknown Speaker 27:10
Because that would be great. Yeah,

Scott Benner 27:11
I think that I think you're just right. So you know, there's that last aspect of it that if you don't have it, or you haven't managed it, like day to day, I don't know how you're supposed to know the rest of it. You know, it's almost unreasonable that you could, but Okay, so let's, let's get to why you're here. She's on on the pod five, I'm guessing. Yes.

Speaker 1 27:31
So she started on the regular or the original. And then we got her quickly switched to the Omni pod five, our Enzo was great. And, you know, wrote it off label for us pretty quickly when it came out. Got her on it. And at that point, she was on the G six. Yep. And we, I would say, had a tough time at first with the five in that. I think we thought falsely that hey, this is gonna solve everything for us. Yeah, you know, it was a little bit different than what we'll eat. But we thought but we got the hang of it and quickly realized that we had to fight the highs a little bit more than we thought it were then we'd like, we felt like she got high a lot on it and started to just be a little bit more aggressive with our boluses she was on that. I'm gonna say about June of 2022 22. She was on it did get

Scott Benner 28:26
it? Right. Yeah, right away. I think it was. It was in August, it came out or you guys got it like, day one.

Unknown Speaker 28:33
Like, it was really quickly.

Scott Benner 28:36
I mean, it was very early. Okay. It was

Speaker 1 28:39
very early. For her age, I think even like it wasn't even proved yet. But we had gotten it for her. And we're working on it. And we get her on it. You know, everything's great. I think the biggest the most significant change we saw was that night, way less wake ups. For us in her there was no really, I mean, it prevented flows really well. We were sleeping better. So we're doing good on it. It was great because she goes to a part time preschool where they don't have a nurse and so it was really great to have you know that that pod just stopped the insulin when she was going, Whoa. And in about June of this past year, so June 23. Her Dexcom stops becoming reliable for us. So her Dexcom are G six pretty much immediately after diagnosis. So maybe September October of 21. We get her on the GS six. It's working beautifully for us. I mean, of course hiccups here and there. Suddenly in June I don't know what start what happened. But she we started noticing a lot of either sensor errors or major discrepancies in her in her her CGM reading from what a finger stick would say. I mean, I'm talking

Scott Benner 29:52
it was reporting her lower than the finger stick. Yeah, yeah, way,

Speaker 2 29:56
way low right. Way more. Unbelievable. Yeah. And those lines were just Scott some of her lines on the on the air. It looked like a shotgun blast. There was no, in some cases no discernible line at all it was it was so strange. So strange.

Scott Benner 30:14
That was strange. So my first thought is hydration.

Speaker 2 30:17
Like, yeah, yeah, we we tried it all.

Scott Benner 30:21
Yeah, no kidding. And so did it ever, like come back together? Because, you know, it's funny, we talked about this all the time, but never really dig into it very much people in general, they make this one static, physical item. And then we plug it into countless I don't know how many customers CGM, you know, are two, they're not all going to work the same with everybody's body chemistry. And you know, when you see things like hydration, you know, that kind of stuff all impacting it, the site placement, etc. I think it's fascinating that we don't see more people. We're just like, this doesn't work for me. You know what I mean? Like it's but I've seen it be wonky for people, and then work again, and you're never Yeah, and you never really know what changed in the physiology that that led to that. I've also seen people just say, Look, this doesn't work for me. And yeah, you know, and have to move on. What did you end up having happen? Yeah,

Speaker 1 31:17
so I mean, extremely frustrated, because we really, I mean, this started in June, and we went all summer just trying and trying, we just kept getting them replaced, getting new ones trying different batches, trying different sites, hydration, no swimming. I'm like, maybe it's the swimming. We've really stuck with it. And it just did not come back. And it's the weirdest thing, right? Because they worked for us for a year like she had, right? I mean, what suddenly changed over the course of three months, you know, because again, we tried, she gave it three months like of this.

Speaker 2 31:48
And then we switch the switch to Dexcom

Speaker 1 31:52
g7. And that for us was really no better. I think, you know, it was a little bit better with the readings. Sure. But the major problem we had there was the connectivity if she didn't have her phone on her body doesn't carry. Yeah, she she's at school, and I'm flipping out texting her teachers like what's her blood sugar? So we quickly we I mean, we probably only did about four G seven sensors. I mean, they were failing to battle so

Scott Benner 32:20
yeah, they all fit. We went was a very loving a g7. It

Unknown Speaker 32:25
was this past September. Yeah, this is

Scott Benner 32:27
more recent. Okay. Yeah.

Speaker 2 32:28
So we we Scott, we went probably, I guess from that June period through September. I don't think we want had either the G six or G seven. We did not have any go pass? Like, what, five or six days? Negan? Yeah, maybe?

Scott Benner 32:46
Yeah, I'm fascinated. Because, I mean, I obviously get talked to a lot of people and a lot of people have access to me. And so when stuff first comes out, I'll tell you a secret when I don't care which sensor it is Dexcom libre, whatever, when they first come out, I don't pay attention to them. Because there's fine tuning to be done. The companies never come right out and say it but I don't, it doesn't make sense to me that they wouldn't need to see it on a lot of people before they could actually like dial it in the rest of the way, if that makes sense. And and I've seen that over and over again throughout the years with a lot of different devices. So the first couple of months, if people are like this thing's low, or it's high or two, I go and just wait a little while. And but then for some people, it's just never does. Arden has a friend who is like, couldn't use the sensor at all. Like it just they don't work for her. And I don't know why. You know, did you contact Dexcom and ask them?

Speaker 1 33:38
Yeah, no one can help me there. No one called Yeah, I was a regular. They just

Speaker 2 33:46
Yeah, eventually they stop denying our requests for replacements, because we had called so much. Wow.

Speaker 1 33:51
You know, I mean, they they tried to and then I was like, Oh, well, so yeah, you'll be.

Speaker 2 33:56
This is where the Long Island comes in useful. Scott. Oh, please.

Scott Benner 34:00
I told the story this morning. To a person who didn't grow up near me. That must have sounded so filthy to them that they didn't they were like, very aggressive. I was like, I didn't think so at all. They were like, it really is. Oh,

Speaker 1 34:11
this is just normal. Kevin. Kevin accuses me of speaking aggressively to him. And I'm like, What are you talking about? Kevin,

Scott Benner 34:17
you're fine. And so I had a European person telling me the other day, you're so direct. And I swear to God, I know this probably sounds ridiculous to the people listening but I thought I am. Right,

Speaker 1 34:31
right. Yeah. I know. I know. And then I stay standing up at night worrying about it. But yeah, I mean, I called I demanded a new transmitter. They sent us a new transmitter. I think what threw me and went through Kevin is that it works for her and I was like, surely you guys have seen this before? Like what is wrong? Like why was this marking?

Scott Benner 34:56
Vegans do you ever try putting one on

Unknown Speaker 34:59
you know, I haven't and I would love to if

Scott Benner 35:03
I do one, one. Because, like, because you're confident that if you pulled one of those out of that door today stuck it on her, it wouldn't work. So put it on you. If it works, then at least you can say to yourself, hmm, it. It's something between her physiology and that device. Yeah, you know, like, give some insight. It

Speaker 2 35:23
is. Yeah, it has to be because like I said, I've had no problem if it works perfectly for you. My lines are smooth as can be. Yeah, no, no, I

Scott Benner 35:34
started to say earlier, and I stopped myself. I don't know how I did that. But I did. I'm always kind of fascinated because people have access to me, I hear a lot of people's stories. Arden's Warren, I can't even remember them. All artists want a G for a g7 g7 plus a G six. And now a G seven. By the way, there used to be seven pluses before there were seven. I don't understand all that. Exactly. And now the current, the g7, in its current form, I've never ever seen a problem. Never like like, it's always great for her. I'm not going to tell you that you don't put it on. And for the first couple hours, you're not like what the hell, like you don't even like that kind of stuff. I'm not going to tell you that. You know, I don't test her blood sugar, or she doesn't test your blood sugar. And it's not off by 10 points. But I was just telling somebody this morning. Ironically, I'm watching someone were one who doesn't have diabetes. And they're like, my blood sugar always looks high. And then I test myself and I'm not. And I was like, yeah, it's only off by 10 points. And she goes, but my blood sugar is 90. It says it's 100. I was like, yeah, when you have type one diabetes, and like that kind of doesn't matter. Like Like, do you know what I mean? Like it does a little and maybe if you're really small, a little bit of insulin can make a big difference. But for the most part, once you're an adult, the insulin you get for a 100 or 110 is like yeah, it's all kind of the same, you know, you'll be able to see Yeah, it's well worth the investigation just to find out and then like so. A couple of questions. I guess. Kevin, how's your thyroid?

Speaker 2 36:58
My thyroid is great, according to my last labs, so I've never had an issue with my thyroid.

Scott Benner 37:05
What's your TSH? Do you know it when it? I don't

Speaker 2 37:09
know it? I've, if you give me a second, I can look those. No, I'll

Scott Benner 37:12
tuck them back in while you look. So I've seen like thyroid numbers mess up like CGM data sometimes. I don't know why I'm that. Trust me that could be completely made up and colloquial at best, you know what I mean? Like, but yeah, I also, Kevin's got he's had diabetes a longer time he's been with older endos. If he came back right now and said his th his TSH was four. I would tell him he needs thyroid replacement hormone and his doctors gonna tell him it's fine. And so like, I wonder if, like, is that a thing? We would check for Lily? Yeah, you know, yeah,

Speaker 1 37:46
she had a checked I think it was a year ago. And they of course told us it was fine. I you know, it's funny before I, we were coming on to talk to you, I meant to check it because I don't remember what it was. But it's that

Scott Benner 37:58
thing that once you have type one or an auto immune issue, you learn to not just hear it's fine and go great. You go What does that mean? What's the number? What's the range? Making? I want to know everything, you know? Yeah. Yeah. Do you think Kevin has? I have no idea why like Kevin's thyroid might be 1.6 when he gets back. Yeah.

Speaker 2 38:14
So Scott, my TSH is, this was just last week. One 1.04 Yeah,

Scott Benner 38:21
he's amazing. Okay, you don't have a thyroid issue. So like, you know, not that that would mean she could or couldn't just, I was just interested. Yeah, I don't know. Like nobody, Kevin no celiac for you? Nope, no, I

Speaker 2 38:33
never had anything like that

Scott Benner 38:36
more more, more autoimmune issues, you don't have that. Now.

Speaker 2 38:40
It's interesting, you bring that up. In general, I do have like allergies. And when I was, I don't know if it was linked at all in any way. But over the years, I when I was a kid, I had basically unexplained hives, and they would they would come about a lot of times in the summer, this would happen when I was a kid. And it would happen, you know, on a recurring basis, even in into adulthood. Especially like in my 20s, you just get hives, and they would be sort of symmetrical on your body. So you know, you get it on your wrists, the on both wrists or like, your, on your, on your thighs on the inside of your thighs be on both interesting or on your ankle, that sort of thing. So it was and no one could ever really figure out. Yeah, what was what was causing it, but I, you know, I I sort of just concluded, you know, I've got diabetes, I probably do have a bit of an over overactive immune, immune system. Well,

Scott Benner 39:39
I buy into that people with, you know, autoimmune stuff and the even just hay fever and stuff like that. That's all just immune response. Meghan, by the way, he didn't bring that up on a date that he

Speaker 2 39:50
Yeah, I think at that point, it was maybe I was in remission from the high

Scott Benner 39:56
Yeah, you guys were never dinner and he was like, by the way when I was in my 20s I got one lives on my thighs. I think come up at dinner did it?

Speaker 1 40:03
No, thankfully, because he would have been out.

Scott Benner 40:06
I'm sorry. I don't know what that means. But you gotta go. You gotta

Speaker 1 40:09
go. Yeah, yeah. I just pulled up Lily's her TSH was 1.7. And about a year ago. Yeah.

Scott Benner 40:17
I mean, that's really good. You know. So if it climbs over to and you see symptoms, do something. Just don't let them tell you. It's in range. That talk. Okay. Yeah, cool. Yeah, no, celiac for her. Nothing like that gluten stuff. What CGM is she wearing right now? Libra.

Speaker 1 40:35
We got her brave three. We started that.

Scott Benner 40:39
That worked better for Oh my gosh. Yeah. I

Speaker 1 40:42
agree. It has been great. Yeah, it's been night and day. It's been great. I'm so thankful the only thing that sucks is the night time.

Scott Benner 40:52
It Oh, because you can't use on the pod five with it. Correct? Yeah. Yeah.

Speaker 1 40:57
So it's just every day I mean, as you know, every day is different. So like, you know, last night she's low so I'm adjusting basil tonight to be you know, you know, while we're but then she'll probably be high all night. So it's just, it's hard. And crazy.

Scott Benner 41:12
What can she wear both me know her? Could she wear both? Like could you use a Dexcom? Yeah. Oh, okay. Socks. Oh, yeah. Yeah.

Speaker 2 41:22
We Yeah. And we when she was still wearing the G sailor G six we were like the the information that that the Omnipod was getting? Was this such garbage? We're you know, does it even matter that she's on automated because it I don't know how the automated mode could even work with what it was getting from? From her Dexcom?

Scott Benner 41:48
I don't think I'm talking out of school to say that I think Omni pod will make on the pod five work with libre soon. I think that's a goal. Yeah. Yeah.

Speaker 1 41:58
I think I read it. I think they are. I think they said the two though, which is weird, because I mean, yeah,

Scott Benner 42:05
I think once they figure it out with one though, it should be able to move pretty quickly to the next one. It's about it's not weird when they start doing that with the FDA. The libre two is probably what was available for them to work with. You know, so they'll get that. Okay. And then it should not take a lot to get the next okay. Because I don't think there's probably a significant difference between two and three as far as the FDA is concerned. Yeah,

Speaker 1 42:29
I think we're gonna try it again, though. I think over Christmas, when she's home from school for several days. Well, we'll try to put the G six back on her, you know, after giving it a rest for a few months, maybe, you know, maybe it was just something going on over the summer. I don't know. We'll try it again before

Scott Benner 42:46
Yeah. It's terrible. It's a lot to go through. Especially the false lows for months. is exhausting. Because I'll tell you what happens is at first you're like, oh my god, she's low. She's like, you test her and she's like, she's not learning. Okay. By the way, you calibrate after that happens? Yeah,

Speaker 1 43:01
like so we did when you can? Yeah. Sometimes it didn't accept it, because it was a 50 point discrepancy, so they wouldn't accept it. And then that happens.

Scott Benner 43:11
You just trick it. This is not medical advice at all. But if you're like a 50 point discrepancy in the CGM says 100. And let's just say the CGM says 150. And you're 100. Just tell it 120 And then let it readjust and then tell it again and like and kind of walk it forward to it. But I know it's still a pain in the butt. My point was, is that you see those lows? They're false or false or false. And then you think I'm gonna stop looking. That's not real. But you know, for God damn. sure that the first time you don't look, it's gonna be a real low and then you're right. Yeah, right. Yeah, let's take your time. No, I know. Yeah. That's terrible. Terrible. Well, I'm there's no way for me to tell you all this. How they get. Oh, I know. Don't told me that. You'd still be in the first doctor's appointment. And you you they'd be pulling you back in a window by now. So yeah, they can't tell you all this. You got to learn this slowly.

Speaker 1 44:03
Now, it's terrible. And I think that was what was the hardest for me is like when she was diagnosed, I'm like, Okay, so, you know, if she's like, at this level, her blood sugar, like, how many carbs should she have? It just there was no concrete answers for any of it. And I was like, What do you mean, and I'm turning to Kevin like, this is what you've been doing, like,

Speaker 2 44:22
well, in the thing was, it was not what I had been doing. I've never like card counted or had those formulas. I would I would go into my appointments. And they would ask me those questions. I'm like, I just have you know, at that time, I just had I had I always had my pin with me and I would look at the food I was going to eat and I just gave myself what I what I knew would be fine. What would work. I'm not sitting there working a formula out. And so that was another opener for you struggle session at these appointments. Yeah,

Scott Benner 44:51
yeah. But I mean, now moving forward a couple of years into it. You've got to be watching what Megan's doing with Lillian thinking like, oh, yeah, that's yeah. Oh, yeah. Crazy. See, right? Yeah,

Speaker 2 45:01
yeah. And since I've moved to the Omni pod Yeah, you know, I've got I've got my, you know, formulas in the in the pod but it's not, you know, I got to look at look at it to tell you what it is. Yeah,

Scott Benner 45:11
you're old school, you're still like you look at a plate and you go that's a units, that kind of thing. Right, exactly. You know, I understand. Wow, that's a lot. It's interesting. You guys are like a little like podcast science experiments. Very nice. Actually, for me, it's horrible for you. But it's really good for me, the podcast and people.

Speaker 2 45:30
I think I think for us, what will be really like where we want to be is that the libre working with the Omnipod? Five. And I think from there, you're back. And I know, there's probably there's FDA issues and approvals. But having the ability to remote Bolus with the audit, I think is for us what we would really ideally want,

Scott Benner 45:54
I gotta be honest with you, I could have used remote Bolus yesterday. So my kids 19 Yeah. She's doing this thing where she's, she's wearing, like, her pod site, obviously went wonky, like 12 hours before it was gonna shut off, like before she was gonna run out of insulin. And by that, I just mean that her blood sugar was very stable at 120. But the algorithm just couldn't get her below 120. And for people listening at this moment while I'm talking, Arden's wearing Iaps Do It Yourself algorithm. Yeah. And so, and it just couldn't move her. So I have access to like, change her target. So I made her target lower, which, which made the insulin more aggressive, which was able to keep her at this 120. But, you know, at some point, like, I sent her a text, and I was like, Listen, this, this pump is over, and she goes, this pumps not coming off until it's out of insulin. I'm too busy. And I was like, okay, so she was willing to live with the 120 for 12 hours, because she's like, I just don't have the time for this. And if she would have made a couple of like, correction, boluses I think maybe she could have pushed it into the 90s. But it's just, I mean, she's in college, and she's, you know, she's killing herself. And she's like, look, this is something's gotta give here. And this is what's going to be the thing today. Now, meanwhile, a 120. average blood sugar is like a six. So it's like a six to a one. Say like, I'm not sitting here worried about that. Right. But it's just, it's just the interesting, even I think it's interesting to say that even with the wonky numbers you were getting with the G six, or the g7. To that you were still having a seven a one C and sleeping through the night. That's pretty amazing. Yeah. So yeah, we

Speaker 1 47:37
thought it was gonna be way worse. We were honestly surprised, because we went into that appointment thinking, Alright, we're gonna be like, ate something. I mean, your

Scott Benner 47:44
whole problem was that it was reporting a lower number, so it wasn't being as aggressive with the insulin. That's, that's where you get the higher. Right, right. That sucks. I'm sorry. I'm not a soothsayer. But I bet you something changes with her. Or they make the I mean, you only mean like, one day, it just all works around the pod five versus Libra. And you'll look back on this is like the horrible six months where this was the problem? You know what I mean? Yeah, I agree with that. Yeah, it's important to keep that attitude too. Because as this stuff changes, and keeps you got to keep morphing with it, like Kevin knows now. Yeah. You know, like, honestly, man, like, 10 years ago, you should have been with all of us doing this stuff. But you weren't going to because you had diabetes for so long. You're like, this is fine. I'm doing fine. And now you now you know, it's it's eye opening? I would imagine.

Speaker 2 48:33
Yeah, it's interesting to like, I think you you made a good point about kind of identifying sort of what what are the big issues, your big obstacles that kind of still remain today in the character, diabetes, we talked about the, you're kind of just still the sort of an old, this old school approach that endocrinologist still have the day, I think there's also other kind of bigger things out there, you know, thinking about Lily going into school next year. And, you know, us, you know, as we've been talking to her, you know, her kindergarten school that she will be going to kind of seeing how, you know, this is handled, you know, in schools with with nursing and those sorts of things. I mean, it's very much it's, I mean, caveman days, in terms of how, you know, this is dealt with in schools. And so, it's really important, I think, you know, to have things like remote bolusing. And we're probably going to be looking at looping if if there's not a if there's not that option with Omni pod by the time she goes to school. So I think there, there's a lot of those sorts of big issues out there that are still kind of holding people back. And I think there's also just accessibility to the devices as well. I think it's a big issue. You know, the last couple of years. I think a lot of progress has been made on on making insulin itself more affordable and, and available, but to me that's only part of the equation it's you also got to have good access to the technology I think that's also lacking now with the way D Amis work and third party and

Scott Benner 50:18
it does loop not work with libre three,

Speaker 2 50:20
we don't know, maybe it does. We haven't started looking into loop yet. We were kind of hoping that Omni pod is going to have a remote Bolus option i

Scott Benner 50:33
Yeah, yeah. I mean, listen, between you and me, that's my hope and goal to is that just, you know, one day, you know, the retail algorithms are just a little more aggressive or customizable, or like, I don't know what the word you want to use. Exactly. I mean, it's, in the meantime, I have to say like, I'm of both minds when I talk about this, because I'm talking about it from our perspective. But I'm always tempted to talk about it from other people's perspective, which is the systems are amazing. And you should not be on Omnipod, five, control, like you, whatever the Medtronic thing is now the 780. Joel does it. And like, if you're on those things, you're doing amazing. Yeah, maybe they're not going to keep your agency in the fives. But wow. Like how like crazy is this technology? And you know, Are you a person who's going to like, build their own algorithm, like app and load it on their phone? If you're not that person? I wouldn't even think twice about it. You know, but yeah, also, I mean, doing what I do, it's just, it's easier for me, it's easier for me to speak up. And I text a lovely man named Mike. And I'm like, I don't know how to do this. And Mike's like, I'll jump on a zoom with you and show you because I like your podcast, and thank you and like, you know, like, I have a different reality than other people do. I wouldn't do it either. Like To be perfectly honest with you. Trust me when we got on the pod five, Arden was like this is great. Perfect. No more like, yeah, Dr. frankensteining an app on my phone. I was like, Nope, nothing like that. And it was the, the one thing that stopped her was the carrying the PDM. She was like, I don't want to carry another device. I want to go back and do do loop. So that's, that's what ended up happening. It's just that that one thing, like I don't want to carry this extra thing. And one day that'll be going to by the way. So you know, right? Yeah.

Speaker 2 52:20
And as as parents. Yeah, having the remote Bolus option means that, you know, we don't have to text the school nurse to say, hey, go give her Yeah, you know,

Scott Benner 52:32
it's a big deal. It's a big deal for reasons that people don't know to like you don't think of which is you know, you have a drifting up blood sugar at school. Now you're involving the nurse. Now the nurse, it probably doesn't make her more aggressive enough Bolus. And this is now a whole day and Lily school and her heads cloudy and like given any like it's, it's, it's a great idea. Also, I could make the other argument. Like what if somebody just Bolus and you didn't know it? And now you're Bolus thing again? And like, yeah, there's, you know, pros and cons to the idea. Exactly. Yeah. No kidding. Okay, what else? What else we got to talk about?

Speaker 2 53:06
Well, I think just to follow up on what you were just saying that you're totally right, that, you know, the technology is is amazing. I that's another kind of thing that we're thankful for with Lilly, you know, I mean, if you're going to be a diabetic, you know, right now is, it's a great time, you know, way better than 40 years ago, when I was diagnosed, it's the best time you could choose to be a diabetic, if you're going to have it, you know, because of the technology that we have. So, yeah, we are very thankful for that. No question about

Scott Benner 53:39
Kevin. And you're just one of those people, man, you're one of those lucky people like you came through I'm going to assume you did regular an MPH you probably did. Beat probably to beef important to write these input. You mean like the animal when I was the animal insolence?

Speaker 2 53:53
Oh, yeah. Yeah, at that time. It was I think it was pork. Yeah. Right.

Scott Benner 53:57
So you've been? You've been through all of that. And you're okay. Like, you don't have any

Speaker 2 54:01
Yeah. And it was Yeah, never even the diet aspect of it. year, you had all these tables of exchanges. This food for that food. You

Scott Benner 54:12
and you've heard me talk about like exchange like you'd used to do the exchange diet, right? Yep.

Speaker 2 54:17
Yeah, I remember that. When I when I was a kid. And it was even to check your blood sugar. You had it? It works the way ketone tests. Yeah, that tube of strips. Yeah. You checked your shirt, and you had to compare the colors. And I'm like, does it that was so imprecise. So

Scott Benner 54:34
please. Yeah, that was a while is the you've been but but my point is, is that I've talked to plenty of people who live through this. And right now there have a lot of complications. And I've talked to people who were just like, yeah, there's I have no problems. It's absolutely fascinating. And I've

Speaker 2 54:49
never had any complications other than maybe it's about 12 or 13 years ago, I had a very, very tiny spot of retinopathy In my left eye, and it was out of my field of vision, and it never didn't require any treatment, and it just kind of went away. Other than that, I've never never had any issues in terms of the issues with feet or vision or anything like that. So I do think that there are some genetics can can come into play, some people just won't, for whatever reason do better than that you're using enough

Scott Benner 55:26
insulin. It was dumb luck back then, really? Like you were just using enough insulin. Yep. Yeah. And you described being aggressive about it, which was probably very helpful.

Speaker 2 55:36
I mean, it to the great frustration of my endocrinologist, you know, they could not understand kind of what my system was, because it really wasn't a system other than I just, I gave myself what I thought I needed at the time. And I, you know, I didn't really hold back on it, and I was willing to deal with, with lows. You know, that

Scott Benner 55:56
was what we were talking about earlier. Right? Just kind of charge ahead and see if it's okay. Yeah. Okay. So we got these things covered, we're doing well, I like this, this is just flowing along. You guys are great. By the way, I appreciate you're doing a very good job of back and forth and not talking over top of each other. I appreciate this very much.

Speaker 1 56:11
It's really hard for me to not talk over him because he's so wrong. He's you know, he's from the south. And so sometimes I'm like, get to the point. You know,

Scott Benner 56:21
the podcast taught me how to do that. I wasn't I was bad in the beginning. In the beginning, I would talk over people. And then eventually I just sat here like wheeling myself not to speak. Right. Right. Begging. Let me ask you a question. When you realize that you know what he's going to say, but he hasn't finished saying it yet. That's frustrating, right?

Speaker 1 56:40
Oh my god. Yeah. If we were here in our living room, I would say it for him and walk out of the room. Yes, Kevin. That's

Scott Benner 56:46
a northeast thing, man. We're like, Yeah, we already know what you're gonna say. Let's go.

Unknown Speaker 56:51
Yeah. 100%. Yeah. We

Scott Benner 56:54
got to make more money and buy a bigger house. It just hurry up.

Unknown Speaker 56:58
Exactly. Yeah.

Scott Benner 56:59
And make it How great is that not to have to drive over that bridge anymore. Be honest.

Speaker 1 57:04
That's the worst. You know, I would never go back. Great. We live in a great place here in the south. But yeah, I mean, as long winded. Southerners, man, it's

Speaker 2 57:15
not just the talking. It's just that every perspective, everything is just slow. You have slow here, right? Yeah. So

Scott Benner 57:22
Kelly and I went to lunch. In Savannah. We were visiting Arden at school. I think it's out of the bag that art is not in Connecticut, right? And so like, so we're in Savannah, and we leave the hotel and Arden's got a class, so Kellen are like, we're gonna go get lunch, then we're gonna get art and later, like this whole thing. So we go to this little place, and we sit down. And let me just say, two fucking hours later, I walked out of there. I'm like, I don't know what just I had fries and a half a burger. Oh, my God, why were we in there? And all I could do while I was sitting there is think, why do none of these people have anywhere to be right? There's no pressure on their face. I'm looking around like, what do you want to make money? Oh, my God for money. I want to give you good. Yeah. Yeah. Like there's people waiting outside go take their money to him. Like nobody thinks about it like that. Yeah. So So Arden said recently, she goes, I love she does. This is a lovely place. This is how we knew. By the way, this conversation was gonna go sideways. Because she started off saying something very positive. She goes, this is a lovely place. I can't wait to get out of here. Oh my god. I'm like ratios. I can't live here. And she's like, what she goes, it's so slow. Like, I just I need people to want to be somewhere while they're driving. I need them to like, have some urgency. Like just She's like the grocery store. I'm gonna she goes, Dad, I'm gonna murder somebody in that grocery store. And I was

Speaker 2 58:50
in the south wait till she gets stuck behind someone in the line that still writes out the checks. Oh, I'm sure.

Scott Benner 58:55
Yeah, that will be on the news then at some point. Yeah, yeah. Young diabetic girl beats old woman in grocery store for writing check. I mean, she's really like, just like, my god. She's like, it's so slow. I can't handle it. And, by the way, conversely, my son's in Atlanta, and he's like, I gotta get out of here. I hate I hate this. I hate being in a city. Yeah, like,

Speaker 2 59:20
where we live is it's changed a lot over the years because we're our specific area. I'd say most of the population at this point is actually northeasterners now particularly from from New York, yeah, areas like that. So I think that is changing. But yeah, you know, sort of capital.

Scott Benner 59:41
We gave ourselves Anjan and making a pile of money we're gonna come by your house is now that's exactly what's happened. Yeah, there you go. Oh, worry. Yeah, we're on it. Oh my gosh. I want to make sure is there anything we didn't talk about that we should have?

Speaker 1 59:58
Oh, And I think we pretty much covered I think everything that we wanted to talk about. One thing I think is pretty crazy. You know, in in Kevin's family, there was no type one before he was diagnosed and that they know of I mean, I asked every time his mother here is here. I'm like, Are you sure? Like, are you positive? There's nothing.

Speaker 2 1:00:20
But we did leave out. Yeah, we did leave that out. Right? Yeah. identical

Speaker 1 1:00:26
twin and he has his identical twin brother is not a type one.

Scott Benner 1:00:30
What about Well, that makes that makes sense to me. But what about other autoimmune stuff, Kevin? Well,

Speaker 2 1:00:35
so the other thing about my brother hit, he has a 17 year old son that does that also has type one. So I have I have a nephew that has type one. So he's a carrier. Clearly, clearly,

Scott Benner 1:00:51
I've got a very scientific way of saying that. Well, what about other stuff in the family? I'll go through it with you. Celiac. In your extended family? Thyroid?

Speaker 2 1:01:00
Yeah. Well, now my mother, she had her thyroid taken out. She had like a gourd, whatever. It's called that condition where your thyroid swells. Yeah, the rule haven't

Scott Benner 1:01:11
Yes. removed. Rheumatoid arthritis.

Unknown Speaker 1:01:15
Not that I'm aware of.

Scott Benner 1:01:17
How about bipolar disorder? Not

Unknown Speaker 1:01:20
that I'm aware of. Okay. But yeah, although

Scott Benner 1:01:23
everyone goes, who knows? Yeah, everyone goes, I don't know. I got an Ant Man. I'm not sure. So like, but heavy hay fever through the families. How about vitiligo, like any other autoimmune stuff. Our

Speaker 2 1:01:35
son, our our seven year old, he does have peanut allergy, and just allergies in general. So yeah, just

Scott Benner 1:01:43
like allergic stuff. I gotcha. Hey, I asked the question very early on, I didn't get the answer to and it doesn't matter anymore. But I still wonder it. So I'm just gonna ask again. How long have you guys been married?

Speaker 2 1:01:53
Let's see. We had our 10 year. We were married in 2017. And

Unknown Speaker 1:01:58
2011. I think they were married for 12 years.

Scott Benner 1:02:01
You guys don't know how long you've been married? That's fantastic. We

Speaker 1 1:02:05
have three children and run a business. And

Scott Benner 1:02:09
I don't know what day it is, right?

Speaker 1 1:02:12
We got diabetes times two in this house. It's a busy place.

Scott Benner 1:02:15
This guy pops up in my Facebook group the other day. And he goes, as you know, and I'm like, Whoa, stop yourself. I don't know anything. I was like,

Speaker 1 1:02:22
Yeah, remember? Nothing. You could have told me yesterday. Running

Scott Benner 1:02:26
a thing larger than you can imagine. And I don't know. i My wife says things to me. Listen, I go to the grocery store. Get to the grocery store and text my wife and go Why am I here?

Speaker 1 1:02:40
Right. Well, Kevin does too. And he's not running this huge podcast. Oh,

Speaker 2 1:02:45
yeah, I do. Yeah, I've the grocery store. Trips are not are not the best i There's always like two or three kind of unicorn items that are on that list. And I'm having to call her like, where do we find this? Where is this?

Scott Benner 1:02:59
Yeah, that could be a boy thing. Maybe that's not this part of it for me. Exactly. But I leave my house going iced tea bread. Like I say it over and over. But I just learned about three years ago. I just tell him I just told my wife and I'm like, you want it? You texted me? You don't text? Me. You're not getting like that's, that's the best I can like I can hope for anymore. But yeah, like I I'm fascinated like 42,000 people in that group. And the guy starts talking to me, like I sleep next to him. And I'm like, Man, I don't know what you're talking about. You're sure you do. And I'm like, No, you remember it. I like everyone should be in my position for a day. And then they wouldn't say stuff like that to people anymore. They go you obviously don't know who the hell I am would be the answer. Because I've talked to 65 people since you and I, I don't know any of their names. I can't see their faces. It's virtual. It's hard to keep track of you know, so yeah. Anyway, you guys were really great. I appreciate you doing this very much. Yeah.

Speaker 1 1:03:58
I'm really excited. Your podcast has been awesome for us. We love listening. And it's helped me a ton. I mean, a ton. Yeah, I've learned a lot. I think I brought Kevin on to it pretty early. And I was like, You gotta listen to this guy. Yeah.

Speaker 2 1:04:12
And then yeah, for me, and for me when I listened to it was, you know, they're talking about things that I had already been doing for many years. And it was nice to know that there. There was this other path out there that, you know, people have discovered, you know, in terms of, like you say, being bold with insulin. I've

Scott Benner 1:04:32
heard that it was Yeah, I've heard that from people. They're like, I didn't know anyone else did it like this? Yeah. Yeah. It's really cool. Scott

Speaker 2 1:04:40
Scott, do you know if if there are endocrinologist out there that actually recommend people listen to your podcast? i

Scott Benner 1:04:47
That happens a lot. Yeah,

Unknown Speaker 1:04:49
I wish more would that would? Yeah, we're trying.

Scott Benner 1:04:52
I have an intake form. So when you come into the private Facebook group, it asks you like four quick questions, and one of them is Where did you hear about This, and I'm gonna say around 40% of people say from their doctors. Oh, really? Yeah. Wow, it's pretty. It's either from other support places, for my doctor on Reddit is a big one, which is fascinating. I've never been on Reddit before in my life, but apparently, thank thank you to the people on Reddit, they seem to like the podcast, or from a friend like that. That's it. I've had so many. So you know, it's funny. This is the time of year where I have to go back to the advertisers. And I'm like, are we doing this again next year? Like, you know, they're like, Yeah, you know, we kind of do that whole thing, that the business part of it, I find myself saying to people lately, this is crazy, because this is the ninth year of the podcast. But when you really look at it, the first four years, were bullshit, like in the grand scheme of things like don't get me wrong. In the first four years, this was the biggest diabetes podcast that existed, it was at some points, the only one that existed, there's been like, I think the numbers now in the mid 80s, people who have launched the type one podcast that have failed in since I've started mine in like the last nine years, there's a handful of them that are left, but as near as I can tell by looking at charts, they don't chart on any Apple chart whatsoever. I'm sure they're helping people and reaching people, but not on enough of a scale that you know, it reads out. And that's I'm not saying anything bad about them. I'm just saying that that's the situation. And still, as I look at the numbers, I think I realized this is in its infancy still. Yeah, those first four years, it took me four years to get three or four years to get to a million downloads, like total downloads. And I was like, Oh, my God, I have a million downloads. And now four years later, I have 15 million. Yeah, so amazing. Yeah. And so I really think it mean, this year should do 6 million last year did like four and a half. Even if it doesn't grow any more. If it stayed at 6 million a year, that would be insane. Those are indicators to me that of growth. And here are some other indicators of growth for me. I was in Oh, usually I say you won't know what this means. But Megan, well, I went to Walmart the other day, Megan. And my I was just we were around the house. If I'm being honest, the Phillies game was getting ready to start. And my wife said, Can you run out and get me iced tea real quick. And I was like, if I can get back here before the Phillies game starts, I'm happy to do this. So I left. I run into Wawa, which is a convenience store for the rest of you. And I go to the cooler I grabbed the gallon jug, and I'm walking to the to the register and I turn a corner and there's this like little girl standing in front of me. Like we kind of turn corners and we don't walk into each other. But we kind of came face to face. And she was only like, I don't know, nine. You know what I mean? She's little, and she's in her little soccer uniform. And her mom's standing behind her. And I just smiled at her because I felt like I might have startled her turning the corner. And I looked at the mom, I continue to smile and I kept going. And I have to admit, if I think back, the mom glanced down at my shirt. And I go get line. I'm doing self checkout. Mega knows I'm flying out of there. I'm proud of how fast I'm getting out of there. You know, I mean, I'm like, I can't wait to keep moving and go drive fast and turn my music up and do all our Northeast the things. Yeah, and I'm gonna definitely break a speed limit on the way home. It's gonna be fantastic. I look up and the lady and her kid are standing behind me. And she goes juicebox Oh, cool. Yeah, go. That's awesome. So I tried to be funny, which didn't go over well, cuz I think I didn't realize how like, excited she was. And I just I put my hand up that my waist and I went not in public. And I thought I was being like, obviously funny. And she goes, Oh, I'm sorry. And I'm like, oh, no, wait, I was good. I was like, no, no, it's okay. It's okay. I'm like, I'm Scott. Give me a second. Like, I'll finish up. And so we're chatting and stuff. That's insane. It's in the last six months. Yeah. In an altar at a gas station. In a Wawa? Yeah. Like, I think it's just starting. So it is interesting,

Speaker 2 1:08:59
Scott. I mean, I think the you're clearly to me, and this podcast is moving the needle, I I would be interested to see like, just on a on a health basis, like maybe you've done this already, you know, do a survey of of your subscribers, you know, what's your average glucose? What's your average a one C, it would be interesting to compare that to, you know, like, general population. And see see how different they are? I think that would be that would be very, very intriguing to look at. I bet you it would be, you know, much better than the Gen pop. Yeah, I did a survey

Scott Benner 1:09:39
last year of 1100. listeners. Oh, you did? Yeah. And it's not like I don't think a hospital would say that. I did it correctly. But we asked as many questions as we could think to ask and I had, I had a grad student from Johns Hopkins go over like a person who knew what they were doing. Oh, excellent. Yeah. And I would say that, who provides adds a satisfactory range of diabetes topics is one of the questions right addresses many of your unanswered questions. And given the choice between medical professionals, the podcast slash the Facebook group and other online printed materials, out of an average of six medical professionals got 2.9 online materials 2.5. And the podcasts was 5.6. Out of six Yeah, it just and now these are these are, you know, someone would point out well, yeah, those are the people who are listening to the podcast, I would point out well, if more people listen to the podcast, then more people would answer that way. Right? You know, so it's there. It's everything. It's the things you need to know in a conversational way. It's learning without knowing you're learning. It's hearing something that makes you go, Oh, I didn't think of that. You know, like, those are the things that can't happen in a doctor's office, the things that can happen in a doctor's office don't happen in a doctor's office. So these other things are, they're never going to find a way to do that.

Speaker 2 1:10:55
Right, exactly. And just the concept of looping Scott, we would have never known now, of course, you could do do a DIY loop system. But for this podcast, endocrinologist, I'm not aware of any that suggests looping or would even mention it. And that's an actual option that that we need to look at for Lily going into school next year, we probably going to need it if Omni pod is unable to, you know, get a remote Bolus option going and get it approved. So yeah, yeah, that's a great example. Right there. Yeah,

Scott Benner 1:11:31
the scope is the important part. Right. So to take you back years ago, I knew my blog helped people. And when I started a podcast, I saw that the podcast helped people at a greater rate. And then I saw as it got more people got back as I reached more people, and then I realized that scaling was incredibly important if you're going to continue to reach people. And so I probably have, I have enough of like a small business owners mindset. And aggressively, you know, I like to win. I don't know how another way to put that exactly. And so like, you put those things together, along with the information. And I was like, if I reach more people, more people be helped. And I kind of just obsessively do that over and over again. And so what the podcast has done is it has a massive reach that nothing else in the diabetes space touches. Like they like people try companies try, they've all given up, they can't do it. Like look at what the companies do for marketing. Now. They just do influencer stuff. Yeah. Right. They can't create their own content draw people in, they know it. And I don't just mean one company, all of them. So they go to influencers. And by the way, those influencers burnout so quickly, they're they're shooting stars, you know, like for six months, you're like, Oh, I love this girl on Instagram. And then we're she now you don't know, it's over. You don't I mean, like, so building, size and scope. And then sustainability was my was my next step. Like I was like this has to, it has to be as valuable today as it was six years ago, that I figured out like, I'll use an example, I just pulled up in front of you, you want really great information about loop, loop and learn has a YouTube channel, the information on there is really great. But, you know, their best video has, I don't know, 1000 2000 views. And that's not a reflection on them. Because, again, it fantastic information. It's a reflection on how people want their information given to them. Yep, you know, I heard somebody say, if I was watching a TV show, or where I heard somebody say recently, you know, you can blame people. And you can blame America or companies all you want, you know, because McDonald's sells french fries to people. But I guarantee you if McDonald's sold kale salads, they'd be out of business. And you know, like, at some point, you have to say, this is what people want. This is how they want it. And what I did was I, I took diabetes information and put it inside of a format about how people like to be entertained. And just mix them together. And that's a thing that still no one will do. Like they won't they want to be very, like uptight and buttoned up if they're going to talk about diabetes. And I maintain over and over again, if that's what you're going to do. No one's going to listen, man, it's King boring. And, and I don't it doesn't matter that it's going to save your life. That's not how people's brains work. Again, they need to kale salad, if that's how everybody's brains work. It's not Yeah, so I just said, Why am I fighting the nature of people? I'm going to make a podcast that I think is entertaining. And instead of talking about movies, or whatever else, the hell else people talk about in podcasts, but uh, talk to people left diabetes, and then the stuff will come out organically. And there you go. It's not a big secret. Anyone could rip me off. Go ahead and try like, you know, like it just nobody will do it. So yeah, anyway, I'm glad you guys found me. Thank you. It's

Unknown Speaker 1:14:55
helped. It has helped us

Speaker 1 1:14:58
out to us anytime. There's some thing we're on or we run into issue, I go straight to your Facebook group and I search it because chances are someone has done it, someone has got it, and I'll search it. And I am so anti Facebook, because I feel like it's doomsday and everyone puts the worst up there. And you know, in the beginning, I promised I wouldn't go on all these groups. But you know, the juicebox Facebook group is real. It's been great. I think it's a great community. I mean, I'm sure for you have one or two people on there. So great people.

Scott Benner 1:15:29
But for the most part, not many, and you just make those people go away. And that the first thought I try if they don't want to play ball, and by play ball, I mean, be nice to people, then they're gone. Yeah. And you know, like, and I did the same thing with the Facebook group that I did with the podcast, I was like, how do people like to talk to each other? Like, why do we just accept that this is what it means if you're on Facebook, everybody's going to be in short, and all that stuff like that doesn't have to be that way. So I set a standard. And I was like, This is how we're going to treat each other. Listen, last night. There's this guy in the Facebook group, he's given me trouble a couple of times. He gets upset when people I don't know, if he gets upset sometimes. And when he tries to make his point. He's a little militaristic about it. And it makes people It makes people upset it see it. So I one time said to him, hey, look, you can't talk like that to people, like chill out, you know? And he said, Oh, I'm so sorry. I'm so sorry. And then a month later, he did it again. And I'm like, so I suspended his account. And then I sit down at my computer last night, and I've got a message from the guy. I'm like, listen, we're not 15 Don't message me about your problems. I was like, be nice, stay in the group or leave? I don't give it like, like, like, it's you know, that's it, you know, and I don't know what it'll do. And honestly, I don't care. So like, at some point, it's the bigger picture. You're helping 42,000 people, if three people want to be idiots, they gotta go like that. Yeah, that's

Speaker 2 1:16:54
also everyone's individual situations with diabetes are going to be different. Yeah, we talked about my situation. And just, you know, for various reasons, you know, there, there are things that you can control. But I do believe there are variables that body composition and chemistry and those sorts of things that aren't, they're also going to affect it. And you know, it's not always a one size fits all, no,

Scott Benner 1:17:19
and twins, there's enough core information that is standard from person to person, that if you have that bit, then you can figure out the rest later. But if you start with the assumption that this is all just chaos, then you're never going to figure anything out. Because you chase ghosts all over the place. When you see things happen. Yeah, it's Listen, I don't want to say I got it figured out. But I figured it out. And so like, you know, and now it's just a matter of just having these conversations over and over again, and letting people listen into them. And

Speaker 2 1:17:49
I think what Megan just said, too, about just kind of the there are sort of places where you can go, you know, there's, there's other corners of Facebook and Instagram, you know, that might have diabetes information. But with social media, I think one of the one of the trappings can be kind of, you're falling into kind of the, you know, a victim mentality with the, you know, I, I would say, again, this is where I go back to kind of being blessed that that I was diagnosed back in the early 80s When this stuff didn't exist. But you know, at no point, I've never had had a time where I've sat and thought, you know, what, why me and why do I have this? And of course they were because, you know, honestly, there's there's a lot of other crap out there. That's way worse than than this.

Scott Benner 1:18:42
You must like listening to Arden when she talks about diabetes, because she's just like, she said something last time she was on that really resonated with people. Yeah, I said, Hey, you know, we're sending you off to college on Iaps. We've only been using it for like 10 days, we don't really know what we're doing. Because it's just turning some buttons and knobs. I'll be fine. And then I was like, Oh my gosh, yeah.

Speaker 1 1:19:03
Helps me because I am like the why me? Why my kid? Why is this happening? And when Arden comes on, it's so awesome to hear. Because that could be Willie in 15 years, or whatever, it's fine. It's just part of whom I

Scott Benner 1:19:16
would help you to know. I think that she got into her car at 11am one day and drove 700 miles by herself to Georgia. Crazy with what we wrote learned later was COVID symptoms. Oh wow. So cheap. So she drove she basically kicked COVID driving south like shivers and shakes the hot like that whole thing and her blood sugar she got there like absolutely fine. And the people that I saw respond back to that little statement if I got just some knobs, like I'll figure it out like buttons, I'll push and it'll be fine. People were like, oh my god, like why am I so worried if this freaking kid is just like yeah, whatever.

Speaker 1 1:19:58
This Yeah. Yeah, yeah, and I pray I pray that Lily is like that one day and I, you know, try to be positive for her and not let her see any of my anxiety surrounding it because that's how I want her to be. Yeah, no big deal.

Speaker 2 1:20:12
It does help her to, to see me with my AMI pod on and mighty sit and wait, you know we would. Yeah, we kind of talked to her about that and you know, just just like daddy's no big deal, that sort of thing that that does help her. I mean, there's been a few times where she'll she's sort of asked, you know how, you know, I don't know what, what word she used magnet to the effect of forever. Yeah, but she sort of moves on quickly and doesn't really yeah, she's just

Scott Benner 1:20:46
the kid. Just go. Yeah, you have to wear it forever. Okay. Yeah.

Speaker 1 1:20:51
I was like, she asked that actually the other day. Do I have to wear this thing forever? And I was like, oh, Lily, don't think about that right now.

Scott Benner 1:20:57
It's gonna be fine. Well, Kevin, I'll tell you what, Lily having diabetes is going to help you. And you don't even know it yet. Oh, yeah. I

Speaker 2 1:21:05
Scott I did not have I never moved to Omni pod until she did. I was just I was always against having a device on me because I, when I was back at it, I played a lot of sports and just thought it would be an impediment and realize that it wasn't when he when she started. And it's it's helped me greatly just just that one thing is

Scott Benner 1:21:25
not unlike most other things in the world that you're scared of before you do them that after you hear them. You're like, oh, this was fine. So yes, yeah, yes. I agree. I really do. Alright, well, you guys are terrific. I appreciate the conversation very much. Yeah. Hold on for one second for me. I'm gonna say goodbye privately. And we're done. So thank you very much. Thank you, Scott. My pleasure.

Let's get rid of that Fu. There should be no fear of missing out on Omni pod because you have the opportunity right now to use my link at Omni pod.com/juice box to learn more about Omni pod five, four to get started right now. Omni pod.com/juice box, please use my link. There's links in the show notes and links at Juicebox Podcast the Omni pod ever since and all of the sponsors. I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast. Learn more about its implantable sensor, smart transmitter and a terrific mobile application at ever since cgm.com/juicebox. Get the only implantable sensor for long term wear get ever since. If you're living with type one diabetes, the afterdark 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. I know that Facebook has a bad reputation. But please give the private Facebook group for the Juicebox Podcast. A healthy once over Juicebox Podcast type one diabetes. The group now has 47,000 members in it, it gets 150 new members a day. It is completely free. And at the very least you can watch other people talk about diabetes, and everybody is welcome type one type two gestational loved ones, everyone is welcome. Go up into the feature tab of the private Facebook group. And there you'll see lists upon lists of all of the management series that are available to you for free in the Juicebox Podcast, becoming a member of that group. I really think it will help you it will at least give you a community. You'll be able to kind of lurk around see what people are talking about. Pick up some tips and tricks. Maybe you can ask a question or offer some help Juicebox Podcast type one diabetes on Facebook. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

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