#1670 Deez Nuts - Part 1
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Scott and Kirby trade stories about kids, chaos, and humor before diving into Kirby’s son’s type 1 diagnosis and the need for better education and support after the “don’t-die” stage.
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Scott Benner 0:00
Welcome back, friends. You are listening to the Juicebox podcast.
Kirby 0:14
My name is Kirby, and I'm a mom of a eight year old who was diagnosed just about a year ago with type one diabetes.
Scott Benner 0:22
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Kirby 2:17
my name is Kirby, and I'm a mom of a eight year old who was diagnosed just about a year ago with type one diabetes. Okay,
Scott Benner 2:24
and I'm sure we'll get to that. But Kirby and I were having way too good of a time speaking before we started recording, so I just hit record very quickly. Now we have two things to talk about. The way I say it Okay, is that all the first one, well, I mean, from the get go, Okay, the first one is my assertion that people are just wandering through the world, unaware of each other, right? And that I feel like that might be getting worse. It's not just me getting older and being a bigger complainer,
Kirby 2:52
but that two things can be true.
Scott Benner 2:54
Both can be true. Thank you, Kirby. I appreciate that very much that you can't just let me have it for a second. But I think maybe the other thing we have to talk about is like, Why do I have so much anger about my vision getting worse, right? But there was something else in there.
Kirby 3:07
What was your friend caught a murderer?
Scott Benner 3:11
So Kirby, I are talking all very related. I use a completely ridiculous example of something about why I have my file naming system the way I have it. And I said, you know, because, like, five years from now, when I get a note that says, hey, you had this person named Kirby on your show one time, and they murdered three people, and we need you to find the recording. I need to be able to find it. And she laughed, because that's silly. Then I said, Hey, don't like she said something about like you might catch a murderer one day. And I, Kirby felt like you're being sarcastic, no. And I said, my friend of mine caught a murderer once, and then we had to share Yes, and now I will tell you about it. Okay, so my friend is mortician,
Kirby 3:54
and I thought that would go, yeah. See
Scott Benner 3:56
now you now, you feel like there's a story here. There is a story. He was preparing a body of an older person, and he was doing all the things he does. And he checked the airway, down the, you know, down the throat and everything, as this part of his process. And he felt like he saw something. And he looked and felt like he did see something. Got a forcep, I believe, and tried to find out what it was and what it was. Do you want to guess? A bouncy ball? It was a rag. Oh, someone, this poor person's neighbor, for reasons I don't, I don't remember. Maybe he didn't even know when he was telling the story, an elderly person's neighbor accosted them and jammed a rag down their throat and suffocated them for the love. Yeah, and then he called the police and did all the things, and they caught the person that did it.
Kirby 4:54
So wouldn't they like when they collected the body? First of all, I didn't think I would. Say that sentence this morning, by the way. But wouldn't they, like, check for
Scott Benner 5:04
that? So I think the person was old enough that they were they were just deceased, yeah, and they just probably thought that's what was going on there. Your question should be the indicator, from what he told me, of how far the person somehow jammed the rag down. That is wild. Yeah, that it was not, it was not obvious, huh?
Kirby 5:27
Yep, that's quite a story. Yeah, there you go. I said bouncy ball because my kids have been taking to putting bouncy balls in their mouth, and I keep having to tell them to stop. So I immediately pictured that happening.
Scott Benner 5:39
So are they big enough that they could not swallow them, or I feel like
Kirby 5:43
everything could get in there. You know, I just, how old are the kids? So I've got an eight year old, that's my type one, and then two, four and a half year old twins, all boys. So, like, everything's just always very chaotic, and feels like it needs attention. The
Scott Benner 6:00
twins putting the balls. I almost said, balls in their mouth.
Kirby 6:04
Well, now you did. So there you go. The older one doing it. They all do it, yeah, like he'll look at me and be like, Look. And I'm like, stop it.
Scott Benner 6:12
Are there any other indications your kids are a little dumb? Or this the only one so far. I feel like
Kirby 6:16
this is fair exploration of, you know, the world around them right at some point they'll stop. I think, oh, yeah, sure.
Scott Benner 6:27
I'm still staring at I'm staring at my kids, going, like, is that ever going to end? You know, looking at myself and think, I mean, honestly, I'm looking at myself thinking the same thing. Because, to your point, you know, I'm sitting here trying to type your name in, and I can't see. And instead of just putting my glasses on, I just sit here pissed. And you're like, oh my god, I heard you talking about this in the podcast race. And I'm like, Yeah, I'm not making it up. I'm angry that I can't see.
Kirby 6:51
This is the equivalent of putting the bouncy ball in your mouth. It's just like a mature version of it. You're doing something repeatedly that is not serving you well.
Scott Benner 7:00
You think that me not wearing glasses is the equivalent of me putting balls in my mouth, but we should call this episode these nuts. Oh, my God.
Kirby 7:10
You know of all of the things that floated through my head of what you would decide to call this, that was not one of the options that I can see what happens? Oh, my God, my husband would be just thrilled. So yeah, I mean, he would go just celebrate.
Scott Benner 7:23
Arden went on a Dee's nuts tear for like, three weeks this summer.
Kirby 7:26
What does that just said it all the
Scott Benner 7:29
time, oh, just all the time about anything that got said for like she was delighted by it, like she was five years old for about three weeks.
Kirby 7:38
I can't wait for the trend to end. I don't know how long this one will be around, but I'm I might be a little over it. I'm over things nuts.
Scott Benner 7:46
Yeah, well, you've been married for a while.
Kirby 7:48
Oh, my God. Let's just take a turn. I don't know what we're
Scott Benner 7:51
going to talk about when this thing starts. I'm trying to be upbeat today, the world, the world got weird again yesterday.
Kirby 8:00
I am here for it. Thank
Scott Benner 8:01
you. All right, so, so we've covered all the unimportant things. Actually, you know what? This may be a thing I do because May I share something with you before we go on and talk about your kids diabetes. Of course, I don't do you listen to the podcast. I do. Okay, so I think it's fairly obvious that I record daily with people who are not accustomed to being recorded, right? And so the episodes all take on sort of a same, a similar vibe in the beginning, because I ask people questions that they know the answers to. It's usually around their kids, like, how old your kids are? How old are you? Have you been married? Like, sometimes I'll say, somebody, are you married? And people are probably like, the hell's that got to do with anything? What it has to do with it is they know the answer to it, and it's something they're they're going to be comfortable. Then they get themselves comfortable, and then I get them comfortable, and then we keep talking. Makes sense, but look how we did. I got you comfortable by talking about a dead body and these nuts what does that say about me? I don't know, but I what I can tell you is that you gave off the vibe that I could do this. So, yeah,
Kirby 9:01
I don't know what that is. And I'm sitting here thinking, Gosh, I was gonna share this episode with like, family members, so now I'm gonna have to, we haven't said anything wrong. Come with a disclaimer. Some people might not even know what is happening right now. So you know, and I can always blame you. I gotta follow the host leads.
Scott Benner 9:16
Yeah, you just say, Oh my god. Another guy's crazy. I I didn't want to, God knows how these things become.
Kirby 9:22
Write an email pleading my case or anything. I didn't
Scott Benner 9:25
send a long note about wanting to be on the podcast anyway. Tell me about your family and how diabetes came into your life.
Kirby 9:33
Sure. Okay, so I already said about our kids. I'm married. We've been married. I'm not even gonna try to guess
Scott Benner 9:38
12 years. Kirby, you don't know how long you've been married.
Kirby 9:42
I do. So this is what I do. Okay, all of the dates of all of the things and all of my life float around like a jumble in my head. And I sometimes forget when people were born. And there is a cutting board in my kitchen that my sister had made for me with my wedding anniversary on it, just the date, so it was 2013 and I just picture the cutting board. So now I. Can do the math, it was 12 years. Wow. So that's I was trying to save you from that
Scott Benner 10:05
circuitous route you took to that that was awesome. You and I might get along really well. My brain works, so you only know how long you've been married because your sister bought you a cutting board with your wedding date on it.
Kirby 10:17
That is a reductionist description of what I just said, sort
Scott Benner 10:23
of what I do. I don't know if you realize what this is. I generalize things. Then we talk,
Kirby 10:27
my gosh, it's how I do the math quick, because we were together much longer than this. We've been together, like almost 20 years, you know? So it's just like the dates are a jumble, like I said. So we've been married 12 years, so we've got three beautiful boys, and my oldest, my eight year old, was diagnosed. We're actually five days away from his first diversity. So we're coming up on
Scott Benner 10:49
it. This is only 361 days old. Yeah, it's
Kirby 10:53
fresh. It feels fresh. It feels feels still fresh, even though we've come a long way. I just
Scott Benner 10:58
want everyone to know it's 360 I just got the math wrong. When that right, didn't I? I don't know. Is it a leap year? How many good point? No, it's not. I was trying to help you, but it's not. I tried to do the simplest of math, and I was I did that wrong. I found myself going like, wait, 364, three.
Kirby 11:14
Cutting Board. Buy the cutting board.
Scott Benner 11:17
It said, how many days there weren't a year this all would have been much easier. That's 100% right? So you have these three, three lovely children, yeah, the oldest one develops type one just a year ago. He's diagnosed, yeah, yeah. Tell me what led you to believe that he had it? What got you to the doctor? Or yeah, yes.
Kirby 11:35
We had just come back from vacation, so we were in the Adirondacks, and typically we left like, a week between vacation and when school started last year, it actually was just we got home the weekend before school started. And that's important, because he started having some nighttime accidents. So he was wetting the bed overnight, and because we thought that that was potentially related to the quick transition to school, because he had some history, you know, he took a little bit longer to, you know, go all night when he was younger, and he had some history of night terrors and stuff like that, really. So we just thought it might have been a regression, and maybe that transition was a trigger for some of those things. So first couple nights, we didn't think anything of it. Then it was continuing. So I emailed the doctor, and I said, Hey, this is going on. We didn't see anything else happening. Everything else seemed fine. She asked a couple questions. She said, don't think it's going to be a long term issue. I laugh now at that, because, like, little did we know, so we just monitored it, but it just continued for a whole week. We couldn't wake him out of sleep. He was like, in a dead sleep, when we tried to wake him up to try to have him go to the bathroom again. And then that's when I was just like, I kind of knew, you know, because I'm, I'm a dietitian, so I this is something that's rattling around in my brain that I know that is a symptom of. And I thought this is either type one or the rarest time of a kid getting like, a UTI, which doesn't,
Scott Benner 12:52
oh, you got diabetes from wet in the bed. Oh, yeah, yeah.
Kirby 12:55
Because, because of how it was happening, it was just like every single night and the tiredness that he had. And then over the weekend, before, we were able to get an appointment for him, like the Monday, after all of this, after a week of this had had been happening, he had a daytime accident. And that was actually when I really was like, this is diabetes, because he He's seven years old. He's not That's not typical, sure. And then something, he was with some family members who said he was drinking a lot. And I a lot and had the bathroom a lot. So that all happened in the span of, like, you know, the wedding, the bed was like a week ish week and a half, and then that daytime accident and the increased thirst was just only a few days. So then he went to the doctor that Monday, and that was that we found out right away. I told the doctor, what's that? What do night terrors look like? So he would wake up, like, screaming and crying and yelling like he was just terrified, like he was in the middle of a nightmare. And it was odd, because he had had this kind of glassy look to his eyes, so we could tell that he wasn't, like, conscious of what was happening, and we would have to wait him out. I mean, it's we just keep him safe, because sometimes he would thrash a little bit, and we just kind of waited him out, sat with him. We were there to comfort him, but just kind of let him run its course. So it would happen not often throughout his young life, but there was a period of time where it was happening often enough that we cousins slept over. We had to tell them, you know, this might happen. So
Scott Benner 14:22
has it gone away completely? Yeah.
Kirby 14:26
And once in a while, I think he'll wake up and, like, just kind of sleep, not sleepwalk, but he'd be, like, not really awake. Do you know what
Scott Benner 14:33
I mean, I slept walk as a kid. I don't do it anymore. I haven't done it in forever. But, like, does he do that as well?
Kirby 14:39
No, no. Okay, so it all kind of, you know, went away. So
Scott Benner 14:43
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Kirby 17:18
Yeah. This is great. Yeah, really, great. That's fantastic. This is exactly what I thought life would be
Scott Benner 17:24
like. We used to just drink and go out on the weekends.
Kirby 17:28
We would say that would be like, remember what it used to be like? Obviously, you know, it's like, you can't do that your whole life, but it's just there's all these things that you're not ready for, because each family, each kid, each person, has their own story. I always say nobody gets out unscathed. So I believe this was, you know, it was something we had to quickly learn how to, you know, manage and help him through. And then it went away. And, okay, now we're where we are. I'm
Scott Benner 17:52
sorry for the detour. I was just interested. Okay, okay, so you sniff the thing out pretty quickly. You just call a doctor. Or do you think it's emergent?
Kirby 17:59
My husband actually happened to have his own annual checkup scheduled. So we actually just asked them if they could use the time for my son instead. And they said, Sure, and I'm at work, and I knew what time this The appointment was, and with my chart, you know, I I'm just keeping my eyes on my phone, and I saw the my chart message pop up that said, you have a new test result available. And I saw it, and I was like,
Scott Benner 18:23
Why does your husband see a pediatrician?
Kirby 18:26
Oh, she's a family doctor, so she sees us all. He's awesome. Oh, because he's a child. He's my fourth child, that's why.
Scott Benner 18:33
Well, okay, so it pops up on my chart, and you're like, that's, isn't that crazy that that's how you found
Kirby 18:38
out? Yeah. And I know a lot of people might not know immediately, but like, it was, I can't remember the exact number, but it was number, but it was over 400 so I was just like, well, that that's what this is. So I just, I actually called the office and talked to the doctor while she was like, in route. She was like, I knew you were gonna call. I was like,
Scott Benner 18:53
so you people who understand lab results?
Kirby 18:56
Yes, I know. But yeah, she's so she's amazing. And so we went to pre folks around here, though, no Golisano Children's Hospital, which is an incredible resource. We're incredibly lucky through urm C and he stayed, I think we stayed two nights, and then we, we came home. Okay, he wasn't in any DKA or anything like that. He just, I'm sorry. Folks near where, oh, near where we live, they the Rochester area. So it's just, it's a very it's a gem. We're really lucky to have the resource. So giving a shout
Scott Benner 19:28
out. So in your note, you say that there was confusion and challenges in the early days and months of diagnosis. Do you remember? So it sounds so formal, doesn't
Kirby 19:38
it? Because I know I was re reading what I wrote. I'm like, gosh, I was having some feelings.
Scott Benner 19:44
Yeah, that you went on. You're like, assumption you did use a lot of big words. You were like, No, and perceptions of support systems, my God, should I have used smaller words for you? No, I understood all of them. And a couple of my looked up. And then once I looked them up, I took it to somebody else, and I said,
Kirby 19:59
Hey, right. You just had to make the font bigger, like zoom to 200%
Scott Benner 20:04
you know, that I saw over somebody's shoulder in the store the other day. This guy's font on his phone was as big as it I mean, there were five words on each screen, you know, like, as it went by, and I thought, This is what's gonna happen, isn't it? Well,
Kirby 20:17
at least we have the ability to manage but, but, yeah, so I think I'm trying to remember what I meant by that, but it was just like, it depends on where you are, like, the information you get, but everybody gets the same kind of basic information. And I know you've you've referenced it as, like, the do not die information, which makes sense, right? Like, they don't know who these families are, what their capabilities are, what their ability to understand it, so I get it. I think when we we got home and we started to realize how many factors outside of, just like the basic carb counting, were involved, I think I got very frustrated, because I was like, Well, geez, like, now that the dust has settled, I want more information on this, because we are intelligent people who want to dive into this, and if you give us the tools, we'll use them. So I think that's probably what I was referencing, because I do think there's a lot that could be done in the early stages, or, like, in the, you know, the three to six month stage after diagnosis, to kind of identify what families are ready for. And there's not really a lot available. That's formal, right? There's like, I think I refer to as like a patchwork of user generated stuff that we're relying on, which is amazing. But sometimes I wish there was something a little bit more formalized. So it's kind of like I can work through almost like class work, because that's how I learned. So I think that's probably what I was talking
Scott Benner 21:36
about, what you want, you know, I find interesting that I don't know how you probably wrote that six months ago, right? And six months later, you're like, Oh, I wonder what I meant by that. Like, I it just, it's very, I guess, just indicative of how quickly things change. Yes, usually when I bump into people who are more newly diagnosed and they're out of their minds, and, you know, they think I actually have to, I have to answer. A lady online today, you know, who just said to me, like, when is the sadness gonna stop? I saw that one. Yeah, so I have to get back to that one. And I think the answer is, honestly, you're not going to feel like this soon, and it's going to, once you get there, it'll, it'll actually be much quicker than you expected. It to be. It just, I don't know, like it's, you just got to make it your amount of time. And I think it's more about learning and becoming comfortable than like I assume that her sadness just comes from uncertainty. Today's episode is sponsored by a long term CGM. It's going to help you to stay on top of your glucose readings the ever since 365 I'm talking, of course, about the world's first and only CGM that lasts for one year, one year, one CGM. Are you tired of those other CGM, the ones that give you all those problems that you didn't expect, knocking them off, false alerts not lasting as long as they're supposed to. If you're tired of those constant frustrations, use my link ever since cgm.com/juicebox to learn more about the ever since 365 some of you may be able to experience the ever since 365 for as low as $199 for a full year. At my link, you'll find those details and can learn about eligibility. Ever since cgm.com/juicebox,
Kirby 23:23
check it out. I think so, yeah, and I think that that's another thing that could have been. And I don't know, looking back, it's easy to say this, but to take away some of the uncertainty at the get go, I think should be, yeah, it should be a very routine part of this, because I remember even looking back, nobody actually sat us down and explained what this would look like long term. It's like, get them the tools that they need to, you know, keep him alive, right, and then follow up in six weeks, and then every three months after that. But at the get go, like nobody actually sat my son down and us at the same time to say, this is what this means. And I was actually the one that had to tell my son that this was forever, because he thought when we were in the hospital, the injections and everything after we left, they would be done. He thought they were all just to get him back, steady, fix, fix, whatever was wrong, and then go home. So I had to do that, which, you know, I want to be present for when he's being told that. But it was kind of like, wow. We just went, we're about to go home. And nobody actually said this.
Scott Benner 24:24
Oh, listen, you knew, but like, oh yeah,
Kirby 24:27
of course, yeah, exactly.
Scott Benner 24:29
Did you know that? He didn't know, or did you did it? Like,
Kirby 24:33
I didn't know until he he said something. I can't remember what it was. This is over, yeah. And I his face. I was like, Oh, my God, I'm gonna have to say it like, in this moment, because I don't even know that he was in the room. I mean, you know, we're in and out. There's all these people in and out. That was something too that I wanted to make sure, I think, in my early note to you that I am a dietitian. So like, I these are, like, theoretically, should know a lot about this. Yes, but it's still hard for me. Like there's stuff that makes no sense to me still, and I wanted people to hear that, especially for the, you know, the person who's experiencing sadness, not to make them feel worse. Like, oh, even a dietitian can't figure this out. How what hope do I have? But it's like, it's okay, like there is a light at the end of the tunnel. It will eventually be fine. I feel like, you know, I think people have different perspectives on that.
Scott Benner 25:24
Yeah, I retold somebody yesterday, just very briefly, that I once took a private call from a, like, a literal brain surgeon whose kid got diabetes and was on the phone, like, I don't know what to do. Please help me. Yeah, and it's funny, because the way you just said it, like, you see it backwards for me, like you were like, Oh, I don't want them to feel bad that, like, you know, a dietitian doesn't get it all the time at what chance do I have? I saw it the other way. I was like, Oh, he didn't get it either. We're all in the same boat Exactly.
Kirby 25:49
Well, that's exactly what I mean. Is that, like, that might be the knee jerk response for people, but that's kind of the point is that it's okay, that it's hard. Because I think there is a feeling that, especially with the technology now, we can get such tight control. So a lot of the information that I see kind of being bounced around is people trying to get tighter, tighter, tighter, tighter, right? Like, get that A, 1c, under six. Get it under 5.5 like, get it as low as you can. Here's all of the things that we do. For me, I think that's great. It gives me a lot of hope, but I wonder if it sometimes gives the impression to others that that's what they need to be striving for. Because for some people, that might not be possible right now, it might take longer to get there, and if you don't get it quickly, maybe you feel like you're never going to get it, especially early on, when you're trying to get as much information as
Scott Benner 26:39
possible, you're bringing up something interesting that is a little back end that I'll share here. So when I start making the podcast, I don't really know what it is like that's just fair, like, I just, you know, I've told people a million times I thought I was going to read my most popular blog posts into a microphone, like, because I had these blog posts that people found really valuable, and I thought, I'll just read them, and then they can listen to them too. I mean, very ridiculous, but it was my thought. That is how I intended to start the podcast. I got away from it pretty quickly. And I've said on here before, like, I think I was 20 minutes and doing it the first time, I was like, Oh my God, no one's gonna listen to this. I was having trouble doing it. I was like, if I, if I can't deal with it, like they're not gonna want to listen to it, you know. And you know. So I don't know what happens the podcast starts, it starts following my personality more and becomes more conversational, and me just chatting with people and and then I had this idea that, like, well, I'll be like an avatar for you listening, and I'll just, I don't know a lot of this, so it's perfect. I'll ask questions, and I'll assume the questions I'm asking are the questions you would have, and you know, hopefully you'll, you know, you'll like it that way. And I think it built that, built on that. And then, like I've said before, couple 100 episodes into it really was like I was always learning on the job, and it started to become apparent from people's responses and letters and everything, the people were just saying, like, Hey, I don't even know what to say, why, but I've been listening to this podcast for a year in my a one season the sixes. And I was like, Oh, awesome, yeah. And then, you know, like, and then I just kind of realized that the I had a framework about how I did things. Then people would come on and add their two cents, or things that worked for them, and that we were basically making a really long winded manual for diabetes, right? Yeah. And then I go to Jenny, and I say, hey, what if I like? I said, I think I have these things. I've like, I've written them down, but I think these are the things I do. And then when I do those things, Arden's a 1c, stays in the sixes. I want to tell people because I think it's unreasonable to ask them to listen to 200 episodes of a podcast to get that information, but I think it'll be crazy if I sit there and talk about it by myself. I was like, I just, I think it'll be hard to listen to and I'll probably start rambling. I was like, and I love the way you think about diabetes. Like, would you come have these conversations with me, you know? And she was like, yeah, right on, that sounds good. And, you know, and we made that Pro Tip series, yes, right? Like, so the way that works is, I didn't expect it to work that way, like I didn't. I didn't expect any of this to be perfectly honest with you. And now we are in a really strange situation, Kirby, because I forget why I started telling you this. Tell me, you know. I know, you know. So just tell me, I
Kirby 29:26
think, because I was saying the impression it might give folks. Thank you. We're back. Okay, hold on.
Scott Benner 29:32
So at some point, when you start realizing how it's all building and working, there's this decision for me to make, right? Do I lay it out there and say, if you do these things, you have a really great chance of this working out, and run the risk of making some people feel like I can't do that, or, oh gosh, it's not working for me. I think in there, in that problem, lies my theory on all this, which is, I. Think that aspirational is the way to go? Yes, I totally agree. Yeah. I think you set up look other people can accomplish this. I'm an idiot. Like, I mean, if you listen that for any I mean, if you listen the first five minutes of this, you can say, I'm not that. I'm not either
Kirby 30:15
self deprecating or calling yourself a genius. It's a really interesting, like, kind of line
Scott Benner 30:20
you are. I appreciate that. I think the answer again, that is in the middle too. Yeah, yeah. I think there are moments when I'm like, Oh no, I there might be something wrong with me, and there are moments when I'm like, I am exceptionally smart, actually. What did we somebody told me the other day, I was sharing my IQ with a personal friend. I was like, I'm a genius. And they went, That's not how the chart says. And I was like, shout up says you're not a genius. Actually, smart. You can't even read the check. I also don't believe I'm a
Kirby 30:50
genius. I was just joking. We all know it. We all know thank you. I do
Scott Benner 30:54
think I'm smarter than some
Kirby 30:56
people are. Yes, and I think that's okay to say that yeah, and your your point is so well taken. And I think the reason it occurred to me to say it is because of my work as a dietitian, I often see the way that people consume information and the way that it might land, you know, differently with people. And that was part of the reason that I think I asked to come on was to say, well, it's one of the like, I think I listed, like, 14 things. It's okay if this isn't the exact right way for you, like, the way that I think the word you use, aspirational, is exactly the way I personally use your information, because it doesn't quite match my full learning style. Because, like I said, I kind of want to sit down, I want calculations, because I start from them, and then I get more freedom, you know, but I use them as a starting point, yeah, but a lot of people learn like that, right? So I think it's good to know how to use this for your own self. Yes,
Scott Benner 31:48
there was a moment, I'd be perfectly honest with you, like, there was a moment where I thought, Oh, I've laid it out for you, and then you'll just hear it, and then that will work for you, right? And then it took me a while of, like, interacting with people. I think it's really important to interact with the people you're talking to, so that you it's not just my assumptions of what's going on. I'm actually seeing returns, you know? And I was like, oh, not everybody uses all of the information, right? Not everybody agrees with me about that piece, or forget, agrees like it doesn't work that way for them or whatever, like, you know what I mean? And then that was a real building moment for me. I was like, Okay, so I've laid out here what works for me. You should pick and choose from it, like a, you know, like a buffet, take from it what you what's going to help you, or what lands with you, and then go off and learn some other stuff and build on that somehow, have your own experiences. Like, what do I care? Exactly, you know what I mean? Like,
Kirby 32:42
yeah, exactly. And I think what has helped me is that this actually helped me identify questions that I want to either ask my husband about what we think we should do or to bring to the end, though, when we go to say hey, you know, I'm kind of uncovering some stuff here and applying it to our specific situation. Because honestly, like when I found your podcast, it was from another mom who we just randomly gotten in, you know, connected with that. We found out that her son had type one as well. And she's like, You got to listen to Juicebox. So this was, like, in the early, early days. So of course, you're looking for anything after, after you kind of come up for air. Yeah, and I'm just starting. I started with the first episode. Then I start, because you have so many, you have so many, and they're so awesome. So I just started picking and choosing, like, based on the not very helpful titles. But that's fine, but it's like, you look at it and you say, Okay, I think this is where I'm at today. And so you start to get this feeling of community. You start to hear other people's stories. And that was like a warm blanket in the beginning, it was like, oh, okay, like, there is so much hope here. There's other people. But then I start going through our actual day to day management, and it starts to get a little trickier for me to find information. Sure, and it's a little trickier even with a because if I'm on Spotify, right, I'm looking for pro tips. And I'm like, Okay, I think I understand this because of my background. I'm like, I don't really need to know about carbs. I've got that. So then I'm starting to piece things together. And I think when I reached out to you, I was in the middle of, like, trying to sort through how to integrate it into our story. I think I've finally found a way that's kind of working for my issue. It's really just like, I'm sorry. Go ahead.
Scott Benner 34:21
I want to hear but I also want to say to you, how great will it be that to know that six months a year from now, sometimes five years from now, someone will ask a question online that this episode will answer and that Nico will have to tell them, hey, put these nuts in your ears and you'll get the answer.
Kirby 34:37
You can't do it. You just can't be awesome. You're either gonna get a ton of people to click on it or, like, nobody, most
Scott Benner 34:45
people know what it means. Don't you think
Kirby 34:49
could it be like to catch a murderer? I mean, like, we gotta workshop this a little bit.
Scott Benner 34:55
I know what you were saying a minute ago. It's like, like, listen, some of these titles don't are meaningless. And. And, but I know, I know there's Thank you. I do. I think of a more as like monikers. So I do see people say like, oh, go listen to, you know, whatever, like and, and I look at it, I think that's a strange title. Like, who came up with that? It's interesting. So you don't need all the information, because you have some from your professional life you're picking through. Obviously every answer is not in the podcast. That's not the goal of it, right? So to kind of finish off my earlier thought, and then we'll move on to what you put together for yourself, I think that the reason the podcast ended up going in this direction is because I have an aversion to kind of lowest common denominator teaching. I don't like when we do that. I feel, yeah, yeah. I don't. I don't like when we dumb things down because, you know, we don't want to leave anybody behind. I think, first of all, that's reductive to that person. I think that's the second time someone's used the word reductive in the list. And I think there's a way to reach that person. I don't think you have to give them less information because you've made some sort of a, I don't know, decision that they can't handle the information. And what about let's say, let's say you're right. Let's say you did find somebody who's just never going to handle the information. Now, everybody gets that level of information, that's insane, right? So let's lay it out there, as easy as as, I mean, listen, I I feel like I do a pretty good job of every Manning this conversation. And I will say, like, for anybody listening who's like, yeah, that's because this is your level. Like, you're right, yeah, right. I'm not having any grand thoughts that I'm distilling for you, dude. I mean, like, I the words that come into my head are the words that come into my head. I think I listened to an episode the other day where I said hospital people made me laugh. I was like, Oh my God. I said whole episode of me not being able to come up with the words I wanted. And I said hospital people at some point. But I think that that's partly why it works for everybody, because doesn't matter really what level you're at, the way I talk about it should be pretty easy to understand, and yet it's not leaving anything out, right, right? So if you hear something that you don't get, that somebody else understands, then that's great. And if it makes you feel badly. I feel bad about that, but I don't think hiding things is the way to
Kirby 37:25
go. I don't think so either, and I didn't, I certainly didn't mean to okay so. And I think that it struck me in a moment where I was like, gosh, I hope people know, you know. I hope people know that it's okay if you're not here and you're so and I think they do, and I think you do an excellent job of of that too. Is that it might take some time,
Scott Benner 37:44
well, Kirby, I told you all that to let you know that, like I hope that too. Yeah, it was worrisome for me, because there was a moment when I made a conscious decision that I'm not going to just, you know, I said this before, and I probably have sounded angry about it at times, or confused about it at other times. But I think that the diabetes community, at least the one that I grew up in, like writing blogs for and stuff like that, very often hid information from people.
Kirby 38:10
Yes, yeah. I think I'll still do, yeah, that's part of my frustration. Is that we, and I don't take this the wrong way, like I think we need to have all of it. But I don't think that there is no other condition like this that I can think of where there is so much management put on individuals, there's so much calculation, there's tech involved, there's medication that you're essentially dosing on your own. I mean, truly, yeah, there's no other condition like that, but there is very little. I will just call it formal support. There is your Endo, and if you're lucky, you've got a good one. I've seen people who theirs doesn't even answer them when they message them in, you know, maybe an immediate need. And so that shouldn't be that should not be the case, that we are left to to do this in this way. So I guess my point in bringing that up is because I know so many people listen to this, and I hope that somewhere, someone is hearing this and says, gosh, wouldn't it be great if we had something that was slightly more formalized so that people could tap into it, especially people who maybe don't have maybe they don't listen to podcasts, maybe they don't learn this way, or maybe they don't read stuff online. Maybe they don't trust anyone besides their doctor. It frost. It frustrates me that. I mean, can you think of another condition that is like this, where it's lifelong, calculating your
Scott Benner 39:34
change doses, yeah, on your own, 24 hours a day. What if you had
Kirby 39:39
to do that, like, with your heart? What if you were responsible for, like, what's the thing called that? The thing that makes your heart beat? Yeah, pacemaker. What if you were in charge
Scott Benner 39:48
on it? You were like, I wonder where I should put this dial.
Speaker 1 39:51
I'll try four. It would be banana.
Scott Benner 39:55
Does feel like that? So I saw somebody online the other day. Outside of my ecosystem, which I think I feel like, I actually felt like a douchebag saying that, but I do think there's like a Juicebox I do think there's like a Juicebox ecosystem now, right? Yes, there is. And I saw somebody outside of it, and this person is struggling, like, significantly, talking about, like, I don't know that life is worth living. I can't figure this diabetes out, and it wasn't my place to say something, but I could have been like, Hey, here's a list of episodes. I think they'll help you, and I think they would have, but everybody is so I don't know territorial that I can't I'm not gonna look like I'm because, to me, it would be helping somebody to the person who's running that space. I listen, I think this is disgusting, because I don't see it this way, and I don't reverse engineer this idea, but I've seen it. I've seen it had a number of times, have been yelled at about a number of times they see it as you poaching their people. And so I'm like, Look, I can't get involved in this, because I don't want to be like, the Oh, Scott's running around, grabbing people out of other places, and this wasn't even Facebook, by the way, and so I don't get involved in that, but I felt, I felt terrible for for a while after I walked away from that screen, I was like, I really think that this stuff would help this person, and now I'm just left hoping that somebody else gets the information
Kirby 41:15
to them. Yeah, and I think those are the people I'm really thinking of, because I think those of us who have found our way to this. There's a reason we've gravitated towards it and stayed there, yeah, but then there's everybody else, and so that's, you know, and
Scott Benner 41:29
there's a lot of everybody else's. That's my other point that I'll make this point over and over again. I hope for people listening who are in a position to do something to help people, this will mean something to them. I very likely reach more people with type one diabetes than anybody else. Agreed, okay, and I don't reach a small fraction of people with type one diabetes. That's a problem. Exactly. Yeah, whether you like me or not, that's not really the point. I figured out a way to reach more people than anybody has ever and I'm not touching a small fraction of people who have type one. And so there's a lot of people walking around out there, you know, you don't realize that if you're listening to the show, they'll be and you're like, Oh, I got to get my my seven down to a six. A lot of people wandering around with 12, A, one, CS, more than you think, you know?
Kirby 42:18
Well, I mean, I know it's a lot. That's my point, I suppose, is that whoever the big we is, we need to do better. Because this is, do you have any idea how to do that? I mean, I've thought about like, I wish, and I told so we had this amazing nurse practitioner who just retired, and on her way out, I said, Hey, are you gonna, like, do anything in your retirement? Because maybe you could, because, you know, most people don't fully retire who love this work as, like, You should do a master class for for caregivers. And she said that it was something that they have tossed around. But like, for some reason, I think there was, you know, nursing shortage, and there's all these staffing things. So for me, like, I don't think that that's the only thing. I think it would be a starting point is to establish this as, like, a standard of care is that classes could be available when you know caregivers are ready, parents and the caregivers who are going to be responsible. Because obviously, my son's not only with us, that they
Scott Benner 43:10
can happen though, right? No, but you
Kirby 43:13
asked, and I think it should be through like a hospital system or a doctor's only because, for the most part, I know people are, there's some camps that are kind of anti doctor and establishment right now, but for the most part, that trust has been established, and it could stem from there, but it doesn't even exist.
Scott Benner 43:30
You know, I was listening to a podcast the other day. I was coming home from, where was I coming home from? Oh, I got to go see the Super Bowl trophies. Oh, yeah. Well, not, of course I did. Actually, that was a great Can I tell you something I'm going to
Kirby 43:47
get to the podcast. Don't forget where we came from. Podcast, don't worry.
Scott Benner 43:51
Hold on a second. So my brother and I don't live in the same state anymore. My brother moved away. He's a turn coat, okay? And for work, I guess, something like, he had to keep his job. He had to come back to go to a professional event, and it was being held in the Eagles stadium. And he's like, Yo, why don't you come with me? You know, we don't get to see each other enough like, he's like, we can hang out for the day. He goes, it's gonna be really boring for you. And I was like, right? I was like, I don't care. I was like, we'll get to, you know, we'll hang out, we'll see each other. And I was like, that'll be great, you know? So I moved my recordings around, and I did the whole thing. I had to go tell my wife I was taking a day off, which is not a thing. You guys don't know me and my wife, we don't really take time off. So she was like, Oh, this must be nice. And I'm like, I know. I'll just sit here and kill myself. And I was like, Okay, you go enjoy your work myself right into the ground while you're out gallivanting. I'm like, I'm at a conference for something I don't understand and have no need for, right? Well, I get to see my brother and Brandon Graham was going to be there linebacker formerly the Philadelphia Eagles, who I believe is the reason. Why we won the Super Bowl against the Patriots, and like a small child, I brought his rookie card with me to get signed. Right? Yeah. Anyway, my brother and I spent two hours walking the floor. He's going from he's actually working. He's going from place to place, gathering information about vendors they might use and stuff like that. I'm out of my mind board. I'm like, oh my god, what they've been talking about, but they're doing a raffle, and I want to win the raffle, so at every table, I have to get somebody to initial my goddamn card so I can put my thing in for the raffle to try to win the raffle, which I did not win. And that's not the point of this conversation, but I got in this position where I had to start talking to people, because why not? And do you have any idea how many people were like, what's Juicebox? Because I had to have a thing, right? And I'm like, Oh, I make a podcast about type one diabetes. And they're like, you know me, people are like, Oh, my son has type one my gosh, I get so many conversations, right? Maybe two hours into this thing, my brother's talking at a table. I've gotten my card signed already. By the way, I'm an adult. I could have just forged the card and handed it in as my entry. But no, I got people to sign the card. I have this feeling that someone's looking at me, and I look over and there is a guy standing in front of me, and he is like, eyeballing my name tag. And I was like, he probably just is, like, what is Juicebox ridiculous? You know what? I mean, I might have smiled and I kind of looked away, and then a brief moment later, he kind of reappears in my peripheral vision, and I'm like, okay, something's happening, right? So I turn I go, Hey, man, can I help you? And he goes, Are you Scott from the Juicebox podcast. Oh my god. And I was like, I am he goes, Oh, like, AC is a vendor there, and where he worked for the event, maybe I forget. And he goes, I saw your name on the list. And I was like, that's crazy. He's like, my wife's such a big fan of your podcast, no way. And so he's like, talking to me and everything, and it's really nice. And we're chatting for a couple minutes. And then it occurred to me, and I was like, you want a picture to send to your wife? And he's like, Yes, please. And I was like, oh, okay, this is crazy. So we take a picture and say thank you and everything, and walk away, and my brother goes, What are you famous or something?
Kirby 47:13
You're like, yeah, in a community.
Scott Benner 47:16
I said, Well, I usually say to people like, yeah, diabetes events, I am right, but yeah, wasn't a diabetes event, and I was like,
Kirby 47:25
That's wild. Is that the first time that's happened outside of something connected to type one?
Scott Benner 47:29
I have been recognized for my voice once in public. I could see that I had a person across an airport to say hi to me once, and I couldn't believe they even recognized me. That was crazy. Yeah, this was different, because I just got back from, like, I went to friends for life, I did a bunch of stuff. Like, there's no doubt, like, in those settings, I'm famous, but you take me out of those settings and, like, no one knows who I am, and honestly prefer it that way, right, right? But anyway, so we're driving home from driving home from that, and I'm listening to a podcast. Watch how I put this all together. This is why I have a podcast, and you don't. I forgot yet, I don't yet I was talking to everybody, not just you, okay? And also, don't start a podcast. It will not work. You'll just own a microphone that you have to embarrassingly explain to friends later. Okay, all right, thanks for the advice. I'm driving home and I'm listening to a podcast, and it's a CIA agent who wrote a book, and I don't know, I'm just listening to him tell his story about being a CIA agent, and he said this thing, and he just said, you know, there's the way people want the world to be, and there's the way it is. And that popped into my head when you were like, Well, what I wish people would do is, like, give, like, master classes on but there's a way the world is, and there's the way things are for real, you know, and the way you want it to be, and the way I want it to be, I wish that person would do that class, right? Yeah, but along the way, the hospital is going to say, like, wow, we don't want, you know, you don't work here anymore, you're not covered by our liability insurance. Or, you know, not everybody's gonna understand, or not everybody will be able to agree on what gets said in the thing. And people will, like, you know, go back and forth for years and never, you know, never come to any conclusions. It's why I like the DIY algorithm stuff so much, you know, like, you know, trio and loop and Android APS, why I think that's so amazing, because it doesn't get caught up in committee. And when it does, somebody just takes their stuff and runs into a different branch and goes, Hey, you know what? I was arguing too much with that person over there. Here's my version of this. Right, right? I wish the world would do that more often with these things, yeah, yeah, but I don't think it's gonna happen. No,
Kirby 49:36
it probably won't. And the thing is, though it does, none of it happens if somebody doesn't try to make it happen, right? No, it won't. And it is. I mean, I guess it's just an expression of frustration, because it seems completely ridiculous in my mind. So it's like, red tape, your bureaucracy, just and egos and all of the stuff. You know, it's like, just do the right thing. It's not, I. That hard.
Scott Benner 50:02
You know, I know no one's gonna do it, because you live in the real world. Well, because, well, I am a realistic person, but I've been listening to a lot of stuff about stoicism lately. I'm wondering if I don't lean that way, it's not for this right now, I think I believe it's not going to happen, because it's easier for it not to happen. Oh, for sure, it's proven to me over and over again, because, because of all the and I'm glad they do it, and they should, but the amount of actual, like professional people who direct people to the podcast is an insane number of people. So that's them saying. That's them having the same thought that I'm having. Like, look, I can tell you about this, but I'm gonna get fired. And if I tell you to Pre-Bolus, like I just heard from somebody recently who got chastised a professional person who got yelled at in a doctor's office for telling somebody that they might have to Bolus for a fat or a protein rise.
This episode was too good to cut anything out of but too long to make just one episode. So this is part one. Make sure you go find Part Two right now it's going to be the next episode in your feed. The podcast you just enjoyed was sponsored by tandem diabetes care. Learn more about tandems, newest automated insulin delivery system, tandem Moby with control iq plus technology at tandem diabetes.com/juicebox there are links in the show notes and links at Juicebox podcast.com Arden has been getting her diabetes supplies from us med for three years. You can as well us med.com/juicebox, or Paul, 888-721-1514, my thanks to us, med for sponsoring this episode and for being longtime sponsors of the Juicebox podcast. There are links in the show notes and links at Juicebox podcast.com to us, med and all the sponsors. The podcast episode that you just enjoyed was sponsored by ever since CGM, they make the ever since 365 that thing lasts a whole year. One insertion every year. Come on, you probably feel like I'm messing with you, but I'm not. Ever since cgm.com/juicebox Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast.
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