Scott Benner 11/1/21 Scott Benner 11/1/21

#569 I Want To Ride My Bicycle

I want to ride my bike. Corey rides a lot of bicycles.

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Scott Benner 0:00
Hello friends, and welcome to episode 569 of the Juicebox Podcast

on today's show I'll be speaking with Corey, he's an adult living with type one diabetes who enjoys riding bicycles, both indoors and outdoors. We're going to be talking about that and a lot more. I for one can't wait to find out how he doesn't run to a walk. I mean, how do you ride a bike inside? How do you stop yourself from seeing the Queen song bicycle every time somebody says bicycle

while you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Please Always consult a physician before making any changes to your health care plan or becoming bold with insulin.

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this show is sponsored today by the glucagon that my daughter carries. G voc hypo penne Find out more at G voc glucagon.com. Forward slash juicebox. This episode of the podcast is also sponsored by touched by type one, please head to touched by type one.org To learn more about them and to get tickets for their 2021 dancing for diabetes program which I'll tell you more about a little later on.

Corey 2:01
Thanks for having me on Scott. My name is Cory Weibel. I'm a type one diabetic have been since since 1997. I'm really just kind of a triathlete. I have competed in multiple Iron Man's, you know, 70 point threes a lot of different triathlons. And, you know, with the pandemic, you know, we were inside, I really haven't been out much I haven't raced in about a year and a half and, you know, just stumbled on, you know, this team type one on Swift. And it's really become kind of my home away from home, you know, being being able to ride indoors on the trainer and still train for races that I hope happened in 2021. But really, it's just become a community of people that are are kinda like family now, you know, that we ride, you know, sometimes four or five days a week with and race. I raced twice a week, usually every week. So it's, you know, it's it's become like a family like atmosphere, based out of Facebook and a virtual world where my avatar? Hopefully it looks something like me.

Scott Benner 3:08
You've said a number of things that have made me think of a lot of questions. So that's good. So you've had type one for almost a quarter of a century. Yeah. Okay. And I'm interested in how long you've been not just racing on bikes, but doing triathlons. Specifically, how old are you two?

Corey 3:26
I'm 35. About to be 36.

Scott Benner 3:29
Oh, you were diagnosed when you were like five, six years old?

Corey 3:32
I was junior high school. Excuse

Scott Benner 3:34
me. Yeah, by my math, it's terrible. But junior high. So you've lived through it. Like you've come up through a couple of different segments of life with type one. But when did you start doing triathlons.

Corey 3:48
So I moved back. So I'm from Pittsburgh, Pennsylvania, I moved away after college. And I was just looking, I had gained some weight. And I was up to as much as 250 255 pounds. And I'm like, I gotta figure something out. Like because

Scott Benner 4:03
you're not my number. You talk. What's that? You're because you're not seven feet tall?

Corey 4:07
Yeah, so I'm six feet like I'm an average dude. I mean, my shoulders are built. I have pretty wide shoulders. So I hold weight pretty well. But like, in my mind, I knew like, I can't live like this. You

Scott Benner 4:19
can I can. I

can. I don't know. I mean, we'll talk. I've interesting questions about that. I think we'll see if everyone else thinks they're interesting. 50 to 55 on a six foot frame. When did you start thinking oh, cuz I know what you mean about being kind of broader in some places and you feel like you carry weight better and so it gives you that false sense of you're okay, like, what way do you start thinking like, This is tip in the wrong way for me?

Corey 4:45
Well, I started just getting into running and I would my gym. I lived in Wisconsin at the time and the gym I lived at was, you know, a half mile down the road so I could run there, do my workout run back home after work. And I just started weighing myself like once or twice a week, and I got on there. And I was like, man, like, this is a lot more than I thought. And when I moved to Wisconsin, I kinda, you know, I had to find an apartment to live in. So, you know, for like, a month, a month and a half, it was, hey, you know, you don't have a kitchen. It's it's fast food. And then I worked in college athletics. So I was I was working 7080 hours a week, some week, I was traveling a lot. And when you're traveling, you know, you stop at McDonald's, and you eat. And so I had put on the way and then there was just that when I finally got settled down, and, you know, stepped on the scale. I'm like, Man, this is this is too much because I played college baseball on a division to school. And I was never a light person. But you know, I played around 200. So 200 to 215. And I just knew that, you know, being up that high, even though my a one C was pretty decent. It was something that obviously wasn't going to be sustainable.

Scott Benner 6:09
Were you a first baseman,

Corey 6:11
I was a catcher.

Scott Benner 6:12
Your catcher was gonna be my next question. Interesting. Okay. So when you were on the road working in athletics, you were recruiting, I imagine?

Corey 6:21
No, so I worked as a sports information director or director of media and information for a division three conference. So I would go to like all the conference championships handle all the media for that stuff. So yeah, it was going from where I lived in Wisconsin, sometimes to Iowa or Illinois, and then traveling again in the same weekend, so it was a lot of a lot of car hours.

Scott Benner 6:46
It's terrible. Yeah, it

Corey 6:48
was awful.

Scott Benner 6:49
It's it's always interesting to me that the people who are sometimes around very athletic people, because of the effort they're putting into it, but not doing the movements that the the people that are around us that they their their health does suffer for that they're very sedentary, you know, watching other people be athletic. I guess it's a Yeah, it's a weird, it's weird to be that close to it and not involved in it.

Corey 7:12
Yeah, exactly.

Scott Benner 7:13
So So you see, you're running your run off to the gym, you're working out you're losing weight, I imagine. And this This, to me is very interesting, because I'm assuming this leads into doing triathlon somehow you meet some lunatics in a gym, and they're like, You know what we do? And you're like, I'll do that was it?

Corey 7:31
Actually, it's really weird because I, I don't have any like real life friends that do this. I had just the the school that I worked out of, it's called Ripon College. They had a lot. They had like a bike share program. And I was like, Oh, that's interesting. And actually, a friend of a friend was doing an Ironman, when I was moving back home. And I'm like, Hey, like, that looks interesting. Because to be honest, at the time, like, I'm a decent swimmer. But it wasn't something I was passionate about. I'm an okay runner, but it's not something I'm passionate about. And at the time, like riding bikes is okay. But it wasn't something I was passionate about. So, in my mind, I thought, hey, like, I can switch things up through this one event, and not be totally bored by everything. So that's kind of the way I got into it. And the friend of a friend that did an Ironman, he kind of, you know, that motivated me to get into it. He didn't continue to do it. So, you know, once I started, I just kind of fell in love with the competition portion of it. You know, at Seton Hill, I played baseball in college and, and we were really good. We actually went, went to the World Series one year, you know, I just needed that itch to be scratched. And I'm a pretty self motivated person. So doing all of this by myself really wasn't a big deal. So it just kind of was like a perfect storm of everything that came together

Scott Benner 9:05
to do you kind of found a way to reignite your competitive. Yeah, heart of Yeah, exactly. Yeah. Did you ever hear you ever hear Mike Tyson tell that story about how he got out of shape? Yeah, he says that, um, that the the competitive part of him is a monster, and he can't if he couldn't feed it at all. And if he would, he said he knew it would. It would just overwhelm his life. And one day, his wife kind of just, you know, gave him a little ribbing about how he was looking. And then a year and a half later, he's in the ring fighting again. He said,

Corey 9:40
Yeah, and yeah, it's kind of like that. Because I know that like, when I when I'm training, like I need to take like taking time off isn't bad. And I struggle with that. Like, if I take a day off in a month, like, I feel awful about myself, like, oh, I can't be getting better because I'm taking taking time off, and my wife is always like, Cory, you need to like, take a day or two and just like enjoy yourself, like, you can't just run yourself into the ground. But what do I do? I run myself into the ground every couple of months, and I have to take a couple days off. And then I realize, hey, yeah, I probably should have taken this day off. And it's a constant trouble because I have that competitive nature. Like, I always want to be getting better and finding that little bit of gain.

Scott Benner 10:26
Right? Well, so Cory, we're not gonna talk about your mental illness today, we're gonna stick on it. So although it would be interesting, I, I guess the the thing that that kind of interests me the most about you, is the possibilities of what you're about to say, based on what I've heard from other people. And let me tell you what I mean, by that. I have found at times that the more athletic people who have type one diabetes, seemed to know the least about it. And I know that's gonna sound crazy. And I'm sure there are plenty of athletic people who are like, I know a lot about my babies, and I'm sure you do. I'm just saying that there are times I talked to people who have done something in college, where they've been around like scenarios where they feel like the diabetes can't get in the way. So it's always a little better high than low or something like that. Yeah. And then you talk to them about, like, what's your ID once again, they're like, that's like seven and a half. And we're like, oh, have you ever considered like any, you start talking about diabetes management with them, and you realize, like, they don't know anything about this? Yeah. And and it's not always, but it has happened enough to me that it feels like a pattern to me. And then they do these amazing things. And I don't want to out this person, because he's lovely. But I was around a person one time who had done this kind of big thing around athletics, right. And I asked personally, like, how did you manage your blood sugar during that? And he said, I just ate a lot of candy bars. I'm like, wait, what? So are you telling me that you just went out and did this incredibly long range physical thing? And then on some sort of a scheduled devour to candy bar? Yeah. And he's like, Yeah, that's what I did. I was like, Oh, well, that doesn't feel like something I can tell people.

Corey 12:17
Right, exactly. That's not the message, right?

Scott Benner 12:20
And so because you've lived through a couple of generations of technology, I want to understand where you started with your management, where you are now and how that's maybe changed or informed what you're doing or if it hasn't, maybe, yeah, maybe, maybe, Cory, you're about to tell me you eat a lot of candy bars while you ride a bike. But, um, but go ahead.

Corey 12:37
Yeah, so I mean, obviously, when I first started 97, it was it was shots into the side. And it was, it was hard. And back then, I'll never forget my doctor when I was in the hospital, which I was in the hospital over Thanksgiving. Um, I do not recommend that it was as like a 14 or 15 year old person who Thanksgiving is their favorite holiday. It was absolutely miserable. Um, but I'll never forget the doctor when I was just kind of like trying to understand what diabetes was saying, Oh, yeah. And 10 years, they're thinking there'll be a cure. And, you know, I sit back now and think about that. And I'm like, man, like, that was way off. But you know, with with stuff like, you know, insulin pumps and CGM. It's, it makes a drastic difference. I know whenever I got my, my pump in my CGM, my Avon see dropped by like a point and a half just by not doing anything. And it really opened my eyes to like, how better management just in a simple sense of changing from sticking shots in myself to, you know, putting, uh, putting an insulin pump on can can really make a difference. And then it was just, you know, making those tweaks with my doctor, um, you know, every visit it might not have been a huge tweak, but, um, you know, it just seeing the numbers and not expecting drastic changes, you know, if I can go down from personally, I like to keep my a one C between like six, eight and seven Oh, and my doctor and I are pretty happy if that's where I'm at. But, you know, if it's like a six, seven, you know, it can fluctuate by point one and to me, that's a big deal and the attention to detail and trying to figure out what works and what doesn't work and just the information you can get from the pump. I know I typically can have some lows whenever I work out it during the day, so from between lunch and dinner, um, so I will let my my levels run a little bit high if I'm going to be riding, you know, in a race after work. That I know it's going to plummet right away. And I can take gels or you know, some carbs pre ride to kind of smooth that out. But it was a tough learning process. It's it really has been trial and error, and just finding out what works best for my body because, you know, talking to other, you know, diabetics that that are athletes, something's worked for one person, and then the next person's like, No, I can't do that. So, trial and error, kinda, to a point has been kind of where I'm at now in terms of trying to figure out how to do things if I'm doing a longer event. So probably about a month ago, I did a six or a six and a half hour ride. And I, I went in with a plan of what I wanted to do, of what I wanted to eat, and when I wanted to eat it, and I was in zone for almost the entire six hours, what zone, try to keep, so I try to keep it. I try to keep it around 180 or below. So I try to if I'm racing 120 to 180 is perfect if I'm but

Scott Benner 16:10
if you don't what happens,

Corey 16:14
try to figure it out on the fly.

Scott Benner 16:16
I mean, I mean, what, what mechanically happened, say, say you started race at 140? Would you get too low at some point?

Corey 16:26
It's a possibility. Yeah. So, you know, if I go out and run, let's say, I'm going out for a run after work today. I could no lie be at 330 at the start of the run, and 30 minutes later, I have an alert going off, and I'm down in any with no insulin on board.

Scott Benner 16:48
Can I ask you a question? Let me ask a question here. And it's the the answer. I don't care one way or the other. You don't listen to this podcast frequently. Right?

Corey 16:56
I occasionally not not consistent I

Scott Benner 16:59
consistently Yeah. So I want to, if I can for a second, I want to agree and disagree with you at the same time. But it'll be a lot of fun. And I'm sure a ton of fun for you having diabetes for 25 years and me not having it. I'm certain you're going to be thrilled by this conversation. But I expect you understand it's coming from a good place. So yeah, absolutely. So I would say that I believe and I have seen it happen over and over again 1000s of times enough to believe it. That if a person is using a really rock solid Basal insulin, meaning that they're their ratios are good and that they work and by work I mean, I mean, I guess what I what I mean is that you could not have food for 568 10 hours and your blood sugar doesn't fall if your Basal is in that space. And you have a good feeling for how to Bolus from meals Pre-Bolus Singh, you know, not creating situations where there's leftover insulin after the foods digested stuff like that. Yep, that if you go into something physical that and you don't have any active insulin going, I can't imagine you dropping that far. Like, I believe that you drop a person, not you, but a person can drop the three hundreds to 80 with a lot of activity, because you're activating the insulin that's in your body. Yeah, right. Right. And that kind of thing. And, again, I don't know what you're doing, like I might be talking about, like, one level of activity, and you might be carrying a boulder up a mountain. Like, I'm not I'm not saying that. You know what I mean? Yeah. But there's there is some balance to be found in there. And God, this is probably not what you expected. But a lot of type ones who have had diabetes for over 20 years that had it for so long before the technology existed. I feel like they're chasing more than they need to be. Yeah. And does that make sense? Yeah, yeah, that makes sense. Okay. And I just think it gets hardwired into you at some point, like that idea of like, oh, when I'm active, I drop. Or when I do this, this happens. And you said something earlier that sparked this whole thought in me. But you're so good at telling your story. I couldn't jump in anywhere. But you said that some people have one experience, while other type ones have a completely different experience. And we take that as like, gospel for some gospel. Yeah, people have these anecdotal like experiences. And then one person will say, Well, I can do this and the other person will go well, I can't that doesn't work for me, except we don't have any background on either of these people do want right is one of them using significantly too much Basal insulin and hardly any Bolus insulin is one of them, you know, is one of their Basal insulins like being significantly underused and so they're bolusing constantly and they're dropping thing all the time. Nobody knows how to talk about it. granularly and so that a lot of their experiences and I know this, just speaking about management, and maybe taking it out of diabetes in general, but a lot of times people's experiences aren't that valuable to know. Because you don't know the other details surrounding them.

Corey 20:19
If that makes Yes. Okay. Yeah, you just know a small percentage.

Scott Benner 20:23
It's not enough to know if they're right. It's like anything else. Like there's, you know, any new story you see or a story your neighbor tells you, like, Oh, my God, the guy two doors over what a jerk bla bla bla bla bla, you go talk to the guy two years ago, he parked his car on my lawn, you know? Like really goes? Yeah, I mean, I come out and his cars parked in my honest Hey, can you move the car? And I'm talking to the neighbor. He's like, hey, it's always upset with where my car is? And I'm like, Yes, we don't have enough of this story here. And yeah, right happens. So often, when we're talking about diabetes, it's the, oh, this is a certainty or this happens to me, and then people share it online. And then suddenly, they think it's a rule. And yeah, that to me is, I think that's sometimes how we get where we are, which is that is that it's just anecdotes built on top of anecdotes that then make rolls in people's heads that they believe are true. And then their self fulfilling prophecies sometimes, and I'm not saying it activity doesn't make your blood sugar fall, obviously, obviously, you know, high level looking at it. That's what happens. And I don't have any reason for saying that to you. Other than I just wanted to say like, I'm not like, you should change your life, Cory? Oh,

Corey 21:33
no, no, no, it's okay. And to be honest, probably probably part of it plays in it is, I mean, it's scary as hell whenever, you know, I'm out on a especially on a run when I'm away from home. Yeah. And I think, hey, you know, this has happened to me in the past, because, you know, I could do you know, when I wake up in the morning, and maybe do a morning ride that I'm fasted, I could I don't drop it all. Yeah. But it's, it's the mid day stuff. And the the post work stuff where I bet I've had zero onboard insulin. And, you know, I haven't eaten in, you know, three or four hours, and I'm just tanking, and I've gone to my doctor, and I've taken examples, like from my pump and showed it, and I'm begging I'm like, someone, like, helped me understand this, because I'm trying to understand it. But you know, am I missing something? Am I too close to it? And I've been trying for, you know, a couple years to try and figure it out. Because it's a scary thing. If I'm, you know, a couple miles away from home, and, you know, I'm tanking, and I'm 50. And no one's around like,

Scott Benner 22:45
it feels to die all by yourself. Yeah. Out Run around, right. Well, I'm, yeah, scary. Obviously, I don't have context for that. And I'm not I'm not minimizing at all, I would say there are sometimes there are things that you don't think to think of like, like end of the day, when the end of the day when people's blood sugar's fall, like after work, which I think is fairly common, right? Yeah. Because I've been able to watch it in another person. What I will tell you is, is that being alive creates a level of stress and anxiety that no one's aware of. And I mean, being out in the world being at school being at work driving, and that requires more insulin. And so you have this bigger baseline, this heavier baseline events on that lives in you all day long. While this is existing, and you maybe it's adrenaline from like, having a crappy boss, or like, I don't know, like, you know what I mean? Like, somebody yelled at you all day, and then you leave that place, and you experience this, like, Oh, I'm out of there. And then all that goes away. And again, you have too much insulin in you when that happens. Yeah, and then there you go. I had to, I learned when my daughter was in school, that I'd have to keep pushing to keep her blood sugar where it was pushing with insulin, but that there was a moment in the afternoon that she had to eat, or that we had to create a Temp Basal that was that was completely void. It was gone. In order to create an inquiry This is because you don't listen too much. So like what I would, my thought would be this. She's going to get low. Excuse me, I'm sorry, at 3pm Yeah, there's an amount of carbs she could eat at 232 40 that would stop the low at 3pm from ever happening. Yeah, or we could completely eliminate or Basal from like, why I forget how I used to do it, but probably about from like 150 to three o'clock. So you take the Basal away for about an hour or so. Yeah, and then it creates a black hole in the future where the Basal doesn't exist. And so when the low comes and it tries the fall, normally it would be propelled by the existing Basal but in Then it gets caught by the sheer fact that there's no Basal that exists. Yeah, there's nothing there. Yeah. And it's, it's, it's trippy to think about it that way for some people but you it is it's like time travel. Like I always say that the the insulin you use now is for later. But a more specific way to think about it is that the insulin you used before it is for now. So right similarly the insulin that you took away before impacts now the same way. And yeah, and that kind of stuff is listen, I'm gonna be honest, I'm a person who cares about a child who has nothing but time to like, look at these things and then figure out little ways to manipulate insulin to make it work an adult try. I'm sure you have like a wife and a home. Yep, might have a baby a baby a baby on the way rationalizations. Yeah. And like so you're busy. You're not sitting around like I am pulling on your your mustache going. I wonder, yeah. It's hard for people. It's why you go to the doctor, you say, Please help me. And they go. I don't know, you get low in the afternoon? Yeah, yes. Thanks a lot.

Corey 26:05
Yeah, it's frustrating, because I would like to Toy what toy was some stuff, but, you know, it's a scary thing. You know, when you get I've never had to go to the hospital because of a low or anything. But, you know, my wife's had to help me, you know, overnight, you know, you know, she's had to help me once or twice overnight. And, you know, it's, it's terrifying. And it's tough to explain, because, you know, people just, I don't want to say they don't understand, but it's just something that's, it's hard to articulate. Um, and you can't, because my wife will look at me and, you know, she'll see, you know, I'll tell her, I'm low. And she goes, Well, how do you feel like she asked me about a month ago, like, how do you feel like, what does it feel like? And I tried to tell her, I'm like, You're never going to understand like, I love you more than anything in the entire world. But like, you'll I could never articulate that to you, a friend

Scott Benner 27:02
of mine. And you said that it feels like her mind is racing, but her body's going very slow.

Corey 27:07
Yeah, exactly. Okay. Um, and there's just no good way to explain it. Like I wish I could but unless you have type one like you, you just even even she asked like, I know when my blood sugar's going high. Like I feel that she said, What does it feel like? And I'm like, I can't explain it to you like, I can try but like, it won't even come close to like, what I feel and how it is

Scott Benner 27:32
Cory. I listen for a person who does not have diabetes at all. I am in and around it as much as anybody and I have 1000s of hours of talking to people that have both been recorded and haven't been recorded. I've heard people say a million different things. My daughter has type one diabetes I've seen adults and children below and adults and children be high and I still have zero context for what it means yeah to you.

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I could never possibly understand it because it's you're altered. You don't I mean like your your your brain is not functioning correctly and therefore all the feedback you're getting is skewed and wrong and not something people are used to seeing. It's like trying to describe being high to somebody who's never been high before. Like, what does that feel? Yeah, you know, it's the amount drugs. They're not bloodshed. Right,

Corey 30:09
right. Yeah, I got Yeah.

Scott Benner 30:12
I know, man, I went to college calm down. But But no, I get what you're saying. And I get your concerns. I and I and maybe, and maybe there's no answer for people who have had to live this long without the technology, like maybe there is no answer maybe that fear is just so grained in and well earned, by the way that you just don't want to break free of it. But I will say something, I don't think a one C is the measure of your health. I think that limiting variable variability of your high and low blood sugars is a good measurement. But a one season indicator, I would say to you that there are about 25 episodes of this podcast that are specifically maintenance. If you listen through them, I imagine your a one C would be in the fives inside of six months, and you would experience fewer lows while you were exercising. Okay, that's that is my guess, based on what I've seen happen to many, many other people and the responses you're giving me the thoughtfulness you have around diabetes. So yeah, you don't need to do that. I'm just saying that. I I know people who have competed in the Olympics that are doing strenuous things like very strenuous long term things and their blood sugar's don't fall while they're competing. Right? You know, and it's yeah, that kind of balance that I'm talking about. But that's not the point you I place a couple shows about this. You do something that I don't, I can't wrap my brain around. So like a triathlon includes bike swimming and running.

Corey 31:48
Yep, yeah, you swim, then you bike, and then you run?

Scott Benner 31:52
What if I told you I didn't plan on doing all three of those things in the rest of my life, let alone on the same day?

Corey 31:58
What when, when I first told my friends, I was doing it, that's the exact same thing. They said to me.

Scott Benner 32:03
That's my honest answer. That's why oh, that sounds horrible. When you said you run to the gym, I was like, kind of a insane person. And then I thought, Well, that makes total sense. Yeah, yeah. No, no. Um, so what is it? How do you prep for it? Like, and how, and what is the day like, when you're in a triathlon prior to COVID?

Corey 32:23
Yeah, prior to COVID. I mean, it's, you know, you, you set out a plan, and you, you know, it's kind of like diabetes, you, you know, you set out a plan to be as successful as possible, and you stick to that plan, you know, you deviate when you need to, usually, I work with a coach. So usually I have a plan, set up, you know, one to two weeks in advance, I take a look at it based on my life schedule, if I need to, you know, swap something out here, there. But, you know, it's usually getting to the pool two or three days a week, I'm running three or four days a week, and then, you know, biking, you know, right now I'm biking five or six days a week. Um, you know, a lot of times, that's, hey, I have to get up before work and do one of the workouts, maybe do one at lunch, or if I can't do one of those times, it's after work. And then on the weekends, obviously, it's, you know, there's more time to do some things. So that's whenever I would get in, you know, a longer run or a longer bike, but um, you know, a lot of time management and just trying to fit something in when there's some time in the work schedule. And in the personal life schedule.

Scott Benner 33:34
It is that that time is spent despite sound like such a simple question, but you're building muscular, like, look for words, but you're building your body in ways that it'll be able to do these things. You're building up a resilience to it, and you're growing towards a longer distance.

Corey 33:55
Yep. Correct. And there is some some short burst stuff sprinkled in there. But yeah, it's mostly an endurance, endurance workout.

Scott Benner 34:05
While I'm not asking you exactly where you work, what kind of work do you do that you have? Like, I'm, I'm fascinated that you have the time to do this. So like, how do you make that work?

Corey 34:13
So it's really nice, because I actually work. I work for 10 hour days, and I'm a full time work from home. So I have every Friday off. Um, so when I say you know, go workout at lunch. My basement I have a bike trainer, I have a wahoo kicker. So my actual bike is on that and I can just jump on there, go on Swift and get a workout in and then all I have to do is walk upstairs jump in the shower for five minutes and and I'm back at my work desk here. When I was working in the office, it was a little more difficult but you know, being being a work from home person, you know, I can take, you know, 20 minutes here over lunch or if I have a longer lunch one day and I was able to start work early, I can get an hour workout in over lunch or, you know, just step out my front door and go for a quick 45 minute run. And that's kind of helped a lot. us rather than just being able to, you know, drive to work, drive back, and then most of that time, it would be workouts, you know, strictly afterwards. Yeah.

Scott Benner 35:22
So you can kind of use commuting time and other dead time that Yeah, did exist during the day when you're at an office job that you don't think about. Yeah. You said Swift is that I apologize. But is that like, peloton like? Is it a? Is it like an online platform where people ride together? Where's that?

Corey 35:40
Yeah. So yeah, so it's a kind of, they consider it a multiplayer online cycling platform. So you know, you have an avatar, you have a smart trainer that's hooked up to I run it off my computer. And then as you cycle, you know, on the bike trainer, your avatar moves, you know, as hard as you're, you know, pedaling and cycling, you use watts. And that's, you know, how it dictates how fast you go, how far you go. So if you're going up, and what's nice about Swift is, it's a virtual world. But it simulates real life gradients. So if, in the game, you're going up a 5% Hill, the game will talk to your smart trainer, and the resistance will ramp up as if you're going up that 5% grade. I'm in real life. Gotcha. So yeah, it's it's like riding outside, you know, quote, unquote, it's like riding outside. But you know, you can do it from the basement. So if it's pouring down rain outside, or if it's snowing, I can get a comparable workout on the game as as I might outside,

Scott Benner 36:58
I'm laughing. And I don't know why. But I'm imagining that there's somebody who can ride a stationary bike who couldn't ride on the road, who's like an amazing person on Swift that if you took them outside, they'd be like, Ah, I don't know why that

Corey 37:10
you're, you are 100% Correct. Oh, no, Jenna, you know, people that, you know, do this type of stuff. There, there are people who are strictly professionals at racing in Swift. And you know, they might race outside. But there, there are certain things in the game that you can be really, really good at. Like, if you're a good sprinter and have good top end watts, you can be really, really good at specific things in here. You might be good at that outside. But you know, a team might snatch you up because you are a great sprinter because that can be used in certain aspects of the races. So it's the same in some sense. But you know, another sense, it's kind of a lot different. If that makes sense.

Scott Benner 37:59
I enjoyed your answer. And I was delighted by being correct. I thought I was being silly. And then all of a sudden, I was like, Am I making a point? Excellent.

Corey 38:10
No, because yeah, so what when you're on a bike trainer, you're not, because when you ride a bike outside, you have to have the ability to balance yourself as you're riding outside. So you're utilizing a lot more of your core, if you're on a bike trainer, you don't have to have that. So, you know, bike handling skills, when you're racing outside is a pretty significant thing. And, you know, some people you know, if they're racing or riding inside on Swift, they don't get that that quote unquote, practice on bike handling skills. So, you know, certain types of races outside bike handling skills are super important on you know, an Ironman bike leg, it's, you know, it's important, but it's not that important, but there's races like criteriums, where it's basically all out for 40 minutes around, you know, sometimes sharp turns, you know, that could, that could be a pretty significant, you know, safety hazard if you can't handle your bike on the road and, you know, caused an accident. So, in a triathlon,

Scott Benner 39:15
how fast do you think you're riding a bike?

Corey 39:18
Uh, you know, probably between, you know, top end, depending on the course how flat it is, or how hilly it is, you know, top end, you know, 30 miles an hour, you know, probably average around 20 to 22.

Scott Benner 39:32
That's fast ourself if you follow those for sure. Hey, quick question. It's gonna sound silly. I apologize. Is this an I'll bleep it out later. Is this hard on your like, you know, your bits and pieces and stuff like that? Like?

Corey 39:46
It's funny you asked that because I just had to go to the doctor today because I've had a saddle sore. So not necessarily my bits and pieces, but there is I think didn't have to go to the doctor today because of something that I kind of have ignored not taking care of

Scott Benner 40:05
for you. Do you find yourself having to expose your butt to a doctor today?

Corey 40:09
Oh, yeah, I did. So yeah, that was a great, great.

Scott Benner 40:13
Good doings, huh? Yeah, I've it doesn't fit here at all. But I told a story on the podcast one time where I went in for a physical and was told that it was like a visit with the doctor. I was told I was going to visit with the doctor for 15 minutes. And then I was going to make an appointment and come back for a physical. Yeah, well, apparently that was relayed to me improperly. So I was going to a physical not, which is fine. But I mean, I listen, I'm 50 I was going to a physical I know what the physical be. But I didn't think it was happening that moment. Luckily, I was prepared, meaning I didn't like you know, you know, run from the gym or something. And then like, show up, so I was, you know, prepared and clean and etc. And I sit there and I think we're just supposed to be talking and we're chatting away. And then he tells me to take my pants down. And I was like, kind of weird interview is this. And then before I knew it, I was having small talk with a man who was um, you know, he's taking his fingers score. I was not ready for it. I did not know it was gonna happen. And so your saddle sore is not making me laugh, because I have a lot. But yeah, I mean, even for ladies, I would think that they're, I mean, what's a word that like adults use like their hay hootenanny? Like I would imagine that's tough with that seat, right?

Corey 41:29
Yeah, so a bike fit is really important. You know, whether you're riding outside or whether you're, you know, you're riding inside on the trainer, that usually can cure things. So really, what mine came from was my saddle was really old. And it had worn away at the edges to the point where I was putting pressure on, on on a part of my, on our part of my bike that, you know, typically wasn't getting that pressure.

Scott Benner 41:58
I was gonna say, we're away at the saddle and then we're away you're asked, that's Yeah,

Corey 42:02
that's exactly what happens. Since I've gotten the saddle but, you know, it's, it's basically, you know, a saddle sores just like a pus filled bump that you that you get well, underneath of that. I'm thinking that I have a cyst there. And, you know, that might have to be surgically taken out, you know, for me to get better. It's like riding

Scott Benner 42:24
is gonna kill you. And by the way, if you want to look inside of my mind, I'm not bleeping Hey, hoochie nanny later, but I might. I might bleep out pus filled. Baby feel terrible. Well, that's, that's Listen, it's amazing. I hope it heals for you quickly and that you don't need surgery for certain. Yeah. Have you ever done an Iron Man and completed it? Yeah, I've done two of them. Do you have the tattoo?

Corey 42:49
My first one. To be honest, it's been so long that I can't remember what I think. 2014 I did Ironman Louisville. And then 2016 I did Ironman Maryland.

Scott Benner 43:01
But do you get the tattoo? No, I do not. I do not your wife tell you not to get her. Did you think it was a weird move?

Corey 43:08
I actually was going to and so I don't have any tattoos to begin with. Right? I'm not that I don't like them. It's just I never had any.

Scott Benner 43:16
I don't have to apologize. Very good. Yeah,

Corey 43:19
it's, uh, I had some picked out that I was going to do. And then it just kind of, you know, slipped my mind. And this is the first you you bring it up is the first time I've thought about it multiple years, which tells me that I probably should not do it.

Scott Benner 43:35
Yeah, you really don't care. I genuinely believe that I know, people who did an Ironman just to get the tattoo. So yeah. Oh, I believe that. So that's it. I don't fundamentally understand any of that. But it's still it's amazing. So you show in your note, you said that there's a so I guess this, this is what this width platform allows you to build teams and etc. And you said you guys have one? That's just for type ones.

Corey 44:03
Yeah, so it's actually a Facebook group. It's called swift team type one. Okay. Um, and when the pandemic started, I was just kind of looking for, you know, a group. I had read on a message board, like a triathlon message board that, Hey, there's this type one group, you know, someone had asked a question about type one diabetes, that was kind of out the left field and someone put in, oh, hey, you should check out this Facebook group. It's, it's Zwift. Team type one. So I went in there. It's a closed group. So I just had to put in that aim a type one and it's, it's a, it's a group of, you know, over 2000 people that either have type one, or have a close friend or family member that has type one. To be honest, it's mostly type one diabetics, about probably about 75% type one diabetics, and then As a spin off to that there's a race for a race team type one that kind of handles all of the racing stuff. So if you just want to race you can join that also. And we put together teams that that do really, really well with a large majority of the teams typically being type one diabetics.

Scott Benner 45:23
Okay. Wow, that's really cool. So you guys just it that's so you're together, virtually though, like you've never Yep. Do you even would you know, one of those people if you looked at them?

Corey 45:35
So actually, through this group, I met a kid that's a type one diabetic that lives 15 minutes away from me here in Pittsburgh. So, you know, I'm gonna, you know, when when things get a little bit better outside here, I'm gonna join him for some group rides. And yeah, it's, it's, it's really been cool. I, you know, on the on the type one group, you know, people are going in there. And, you know, we have a guy that travels for work. And when he travels to a different city, if there's one of us that that lives there, he's like, Hey, let's go out for a bike ride. You know, we have people meeting each other in real life off of the group, and it's really cool whenever you're traveling somewhere, Hey, is anybody from here and you know, getting together for group rides and stuff. So it's, it's, it's way more than I expected whenever I whenever I started.

Scott Benner 46:27
That's it. Listen, I think that's amazing. I also think that after that baby comes, if your wife lets you out of the house to go for a bike ride, I'll be amazed.

Corey 46:36
So you know what the worst part is, I actually signed up for two half Iron Man's last year that got bumped to this year. The first one is a week before her due date. And the second one is two weeks after she is set to give birth. So

Scott Benner 46:53
those sounds like when you go to those. That'll be the reason she leaves you 15 years later. So you'll be standing in a courtroom

Corey 47:01
ready? That's already cancelled?

Scott Benner 47:03
Yeah. For you be standing in a courtroom in your late 40s. Going Wait, are you still mad about that? And she'd be like, Oh, yeah. 100%

Corey 47:11
Actually, she she's the one telling me oh, yeah, you can you can go do that one. Two weeks after I'm like, Cory, Are you effing kidding me right? away?

Scott Benner 47:19
I'm leaving. How long you been married?

Corey 47:22
I'm got married at the end of 2019.

Scott Benner 47:25
That's a trap. Cory. Let me let's lay. I'm a Veteran. I'm gonna tell you something.

Corey 47:28
No, at the end. No, I'm sorry. She's gonna be mad. 2008.

Scott Benner 47:32
Don't worry. She tested you there. You can go. Sure. Go ahead. It's no problem you're supposed to then say no, of course I would never go then. That's that's exactly what I Oh, that's a trap. That would be like if she's like, you could you know, go out with one of my friends. I'm okay with an open she does. That. Cory. She doesn't mean that. That's not okay. You can't do that. No, no, no, no, you're smart. You took care of that very well.

Corey 47:55
I want so I was originally right. November, November 2019.

Scott Benner 48:00
Got him sit back and say your blood sugar is low right now. Hey, Cory. Yeah, exactly.

Corey 48:04
That's what we're gonna play it off.

Scott Benner 48:05
Yeah, you're fine. Don't worry about that. Corey, his wife. He knows when you got married, relax. No, seriously, I would never ever do that. That's like my one time my wife is I suppose looking at a car and she was she you can get that I was like, I waited like four more weeks to make sure she really really meant it. Because this was one of the Well that's

Corey 48:23
the thing. So So whenever you go, and especially the bigger races like Iron Man's and 70 point threes, we treat them as a small vacation. So we'll leave on a Thursday, the race is either a Saturday or Sunday. So we take it as like a Thursday through Monday thing. And my, my wife just loves to go, you know, as I'm racing, she's beating other people, you know, spectators and stuff show. She used to just, you know, post up at a bar on the, you know, on the right by the race and she'll follow me around and I couldn't ask for a more supportive wife seems like terms of this. It's, it's pretty insane. But yeah, we it's a whole thing. So we'll go a few days early. Check out some sites around places we go to we'll stay in there too after to see anything we want to do together. So yeah, it's turned out pretty well.

Scott Benner 49:17
Cory Listen, let's take a pause here while the married people who are laughing at you who have older children, and think that you think that's gonna be your life as you get older. Let's let them settle back down and wipe the tears out of their eyes as they're driving. You guys gotta be careful while you're driving. You can't just start crying like that. No, of course. Listen, I think that's really amazing. And if you can keep that going after you have kids, then you should write a book because that's pretty cool. Seriously, and I'm jealous of your if I'm being honest, I'm jealous of the fact that your passion also leans into your health. And that's really kind of great. You know what I mean? Like to have a thing that's doing two things at once. It's, it's, you know, it's it's fun. Feeling a passion? It's it's giving you a hobby. It's keeping you healthy. Like, that's really terrific.

Corey 50:06
Yeah, yeah, it's been a, it's been good so far

Scott Benner 50:09
know what kind of pump you're using. You said you had a pump, but you didn't tell me which one?

Corey 50:13
Yeah, so I had the 670 G,

Scott Benner 50:15
I was gonna say you're on Medtronic. It's right in that part of the country. Is that the automatic one? Is that the? Yeah, it is making those decisions for you. And it's keeping you at like a six, seven ish 687?

Corey 50:28
I think my last was 6969 with with very minimal blows. So Right?

Scott Benner 50:37
Does it allow you to override it? Like what? Like, what if you woke up today? And you were like, dammit, I want my agency to be six. His day, can you see how to inside of that system? How to manage that?

Corey 50:49
I would probably turn off, it's called Auto mode. I would turn that off and just be able to tinker with it myself. Yeah, gotcha.

Scott Benner 50:59
That's a rousing, rousing celebration for auto mode, you know what I would do? I would turn that auto mode.

Corey 51:07
Well, so yeah, so So auto mode I used to have trouble with with overnight lows, and, and it it made them non existent. So I was really happy in that, like, during the day, it can be a little iffy. But I'm actually I'm up on my warranty at the beginning of the year. So I have a endo appointment in July. And I'm going to toy with the idea of possibly moving on, if something else makes sense, fun time

Scott Benner 51:37
for you. It is like that. It's a fun time, you could be tandem IQ, you could go on the pod five, there's so many options now. And you get them yeah, the Dexcom sensor, which, from what I hear is a better experience, maybe than the metro.

Corey 51:50
Yeah. And that's what's really nice about like the the type one group to like, probably every couple of weeks, someone's coming on, like, hey, what do you think about this system, and I just kind of saved those conversations when I'm gonna sit down and really, you know, decide if I want to stay with Medtronic or go somewhere else. Because, you know, people are putting in, oh, I have this system, and they're given pros and cons. And, um, you know, to me, there isn't anywhere else that that I can think of that I can go where I get people that are wearing, you know, any system that's available, there's going to be at least multiple of them, or who are in that thread talking about it. So yeah, it's going to be a good source of information, you know, over the next couple of months, when I start to seriously look and see if I want to change Plus,

Scott Benner 52:41
they're living a similar lifestyle is yours, which makes it Yeah, exactly sure to hear from you would love the Facebook page for this podcast. Maybe? It's, um, I think it's up near like, 11,000. Listen, listeners are in there. And they're just talking about management stuff constantly.

Corey 52:55
Oh, yeah. No, I'll have to join that. Because that, yeah, I didn't know. That was a group. But I'm definitely going to join that

Scott Benner 53:03
I'm enjoying talking to you. Because you are mostly unaware of me and the podcast and all that stuff. And there, it's nice, because there are some times when people come on, and they're just so aware of it that you know, the conversations take a different turn because sometimes they're here to like say thank you sometimes and which is lovely. And I don't want to say it isn't so so yeah,

Corey 53:22
so I came across your podcast most to be honest, mostly through the athletic stuff. So I've listened to all the all the athletes you've had on and things of that nature. And yeah, I listened to so many podcasts and I have so many downloaded waited to go that I've been waiting to listen to for years. It's just sometimes tough to get to them. But you know, I've always enjoyed what what you've done so far. And yeah, I do want to listen to some of those management one. Thank you. That you had mentioned earlier.

Scott Benner 53:55
I also I'll tell you about them in the second quarter, but I appreciate how you said so far. I always like that when it makes me smile when somebody like they say something nice about you though, like so far everything I've heard. In case you've said something I

Corey 54:07
guarantee it's gonna kick your

Scott Benner 54:09
case, you've said something crazy that I don't know about. I don't want to attach myself to it. I don't want to be like this guy. Everything he says is genius. And then I got to pick up my phone one day and hear you talking about some crazy conspiracy theories. That was lovely. The way you slip that in there. You're like, you know, I've heard I'm okay saying I listened. Far my friend. Did this go anywhere near the way you expected? Or is it? Did you not have an expectation for this?

Corey 54:38
I really didn't have an expectation good. No, I

Scott Benner 54:41
thought I was I I'm not kicking you off. I'm just I thought it was great. I enjoy talking to you. I know that. Um, so for me, I'm in. I'm in an odd predicament. You know, in these conversations, you've had diabetes for a very long time. Do you have like I said before, I've had experiences that people have been diagnosed in the last five For 10 years even have not had, you've had more experiences that people diagnosed the last three or four years have not had, like you've lived through iterations of what it meant to have type one diabetes. And you get all those experiences. And then all this technology comes along. And these ideas like I mean, honestly, can you try to think back to 20 years ago, you're going into high school, I'm a doctor and I pull you aside and I go, Cory, what I want to do is create a black hole of Basal insulin two hours in the future, so that you'd be like, what is what now? You know, and none of that existed because nobody had CGM, they couldn't see what was happening. They couldn't suss out where things were going right and going wrong, etc, etc, right. But you feel a very soft spot in my heart when I'm talking to you. Because I have a friend who's passed away who has had who had type one diabetes, since we were kids, we were 18 or so. And he died for certain because of his type one. And he, you know, he grew up managing the way you would manage in the late 80s. And he never really ventured away from it, he never really thought more or less about it, it was always better high than low, because you know, I get dizzy or I fell out of bed one time or you know, like that, those kinds of things. And then the technology came along, the better insulin came along. And he just never sort of came along with it. And if I tried to talk to him about diabetes, it they tried to imagine just the angriest conversation, you could write like, he would take it as poorly as you could expect there. And yeah, and only because we love each other and knew each other for so long. Could I even get a couple sentences into Hey, I think you might like this Dexcom thing. Right? Right. But nonetheless, you know, it wasn't the B and you know, he had a heart attack eventually, and and he passed, he never woke up from that heart attack. And when I talk about diabetes, it is with my friend Mike's like memory in the back of my head that I never want to put people in a position where they think, better high than low. I don't know. Yeah, like, I'm gonna err on the side of caution. Because that's sometimes it hasn't for you. And it doesn't seem like it ever would. But it becomes a slippery slope for other people. Where Hey,

Corey 57:16
Scott, yeah, I'm not gonna be a show like, no. I mean, that's how I've thought in the past,

Scott Benner 57:22
I would imagine and with incredibly good reason, like I said, from where you came from 100%

Corey 57:28
Yeah, so yeah, I'm so I'm sorry, for your loss. Yeah, it's, and I'd be lying. If I said, you know, I'm terrified of diabetes, killing me. I mean, it, you know, it's, yeah, 20 plus years already. And, you know, you don't really know what it's done to your body, you know, and I'm only 35. You know, 36. You know, if, if there isn't a cure, you know, if I don't take care of myself, like, it's a scary proposition, you know, 20 more years down the road.

Scott Benner 58:01
Yeah. And it's only what it's really the only reason why I brought this stuff up with you earlier. And it wasn't because of you, it's because I have the added. I don't want to say pressure, because I don't mean pressure. But maybe it's responsibility, I'm not certain. But there are a lot of people who are going to listen to this. And so I don't want to, I never want to feel like I'm saying it's just 150 Let it be at 150. Because what happens to people's 150 becomes 160 comes 180, then all of a sudden, to hundreds, only 100 points higher than it's supposed to be and, and then they they kind of tumbled down that rabbit hole, and they lose track of it. And I am telling you again, I don't have type one. But this podcast is incredibly popular for a reason. I don't think it's my razor sharp wit. So it's because of how we talk about using insulin and how effective it ends up being for I think most of the people who listen. And so and so I just want people to know that there is a way to use your insulin that doesn't lead to issues like that. Now, most people are not going to be doing a triathlon or not working out like you every day, I'm not saying you're not going to that that couldn't possibly happen to you, obviously, it could, if you just jumped into it without having settings in the right place and really understanding, you know, the insulin use and stuff like that, which I'm not saying you don't I'm just saying if a person did and didn't have that they would put themselves in a problem very quickly. And I don't know what it's like to be by myself and feel like hopeless and lost and helpless like that. And I can't imagine it's not the scariest thing in the world. You know, so I get all sides of it. I just I think that people should in general also get all sides of it, and then make a decision based on absolutely, you know, based on what they want to do. I got very far away from there's a really cool Facebook group where people ride virtually that have type one diabetes, I'm sorry, which I hope people check out if you're like a swift user and you don't know about this

Corey 1:00:00
Yeah, and I mean, even if you just want to John want to join the group and you have a bike and you want to ride inside, like, just join the group and experience it, if you don't like it, you know, you can always leave like that there some of the most supportive people I've ever met in my entire life. And it's, it's, it's vastly positive. Like, if there's something negative said said in there, you know, it's it's taking care of not that not that things are, you know, not that it's just a rosy proposition that you can only say nice things, but, you know, if something, if something is set out a line, people are gonna say, hey, like, you know, why would you? Why would you say that? And I think it's just a general understanding in there of just like minded people that want to be healthier and want to be better. And biking is just one avenue to hopefully help. And then, you know, if you have questions, just ask, you know, someone probably has had an experience or, you know, has something that that might be able to help. Um, and, you know, I'd rather have too much information or, or too much, or an ability to ask too many questions, then not have that.

Scott Benner 1:01:14
Yeah. Well, you're preaching to the choir here, because the, the Facebook page around the podcast, I, I managed the same way. Like I don't like I don't, I don't really manage it at all. I look here a bunch of adults act like, you know, have conversations be nice to each other. The rules of the it's, it's, I wonder if I can just find them very quickly. Hold on a second. How do you figure this out? Group? Moderation, say, oh, group rules. Here's rule one, be nice, be helpful. Be human, treat people the way you would be treated if you break the rules, that I'm gonna have to kick you. And I don't want to be involved in both. Like, that's how the rules go. You don't? It sounds. Yeah, it sounds like the same thing. Yes. Yeah. My rule number three is, if this community becomes a pain in my ass, I'll delete it. Like, yeah, just like, Please don't make me involved in pettiness. And it turns out, it's never been a problem. And I think for similar reasons to what you're describing, because there was a catalyst that brought everybody together, they listened to the podcast already. So they were they were very similarly minded. They come together, and now they find themselves thinking about things. Similarly, so there's no real reason for them to fight. They just help each other. It's wonderful. It's one of the I can't believe I'm saying this. But creating that Facebook group is one of the was one of the top 100 best things I've ever done in my life, because I watch how it helps people. Yeah, and

Corey 1:02:38
stuff like that is like I'm not on Facebook, like I don't post anything on my junk. The only reason I'm on Facebook ever, is for racing. And we have, you know, we have groups of every team has their own messenger group and the team's online like, I talk to people on there, but I don't check Facebook outside of that. If I didn't have this, I probably wouldn't be on at all.

Scott Benner 1:03:02
Yeah, you and I are the same exact query. I'm a grown man, I don't want to be on airs. Every time I open it up to manage something for it, I remind myself, I'm managing a group for the podcast. I'm not on Facebook. That's how I feel. Yeah, exactly. So it's very similar to when I post something on Instagram, I think to myself, Oh, what am I 15? You know, so, but I, you know, it's a great way to reach people. And it's a great way for people to reach up each other. And I think that all that I think like I'm not denigrating, and I think it's wonderful. I just, I feel a little too old to be on social media like that. At times, you know, but it does a wonderful thing for people as the podcast does. And I bet you your writing group does and, and so yeah, and so on. You know, I love teasing you about being married. That was fun.

Corey 1:03:46
Hey, that's okay. I'm still in the early stages, so I can take it.

Scott Benner 1:03:50
Yeah. Oh, you're right. It had none of those things landed with any real honesty for you.

Corey 1:03:57
I'm still living the dream.

Scott Benner 1:03:58
Yeah, for 15 years. Now when I tell you, Cory, you're not allowed to go ride your bicycle on the weekend. But but I'm an adult. And I work hard enough. Like that's not how this works. Cory Shut up. Yeah, exactly. That's fantastic. Oh, my gosh. Is there anything that we didn't talk about that you were hoping to?

Corey 1:04:15
Yeah, I just actually wanted to plug our racing teams that that's okay. So really our biggest race group, it's called WT RL. And basically they do team time trials. So that's every team can be up to eight riders, and you ride as a team on different course routes every week. There's about 4000 riders every week. I think this past week there 700 teams. They're divided up into what's called Coffee classes, which are kind of broken down based on ability level. So in essence, there's four of those and the top 10 teams in each coffee class. get promoted to what's called the platinum league. And that race is shown on YouTube with commenters like a legit broadcast where they bounce from team to team talk about talk about how teams are racing talk about backstories. And our teams are wildly successful. And that this week, I know we have three teams in the platinum League. So it's not just like our teams are there, you know, some people do ride just to have a little bit of competitive but they are now to win. One of our teams that I raced on two weeks ago, we set a course record and and won our coffee class. And, and we finished, we finished third, your two weeks ago, we set a course record last week, we finished third. We've been in the platinum League for the last 22 out of the last 23 weeks. So we have some legit seriously good bike riders, you know, throughout. So if that's something that interests you know, jump in the people that do the commentary. To be honest, they love our team, they always talk about type one diabetes on the broadcast, talk about how, you know, we use the platform and the exercise to to help keep ourselves healthy. And we were featured on the broadcast last week for about two minutes, which doesn't seem like a lot. But you know, for an hour long race with hundreds of teams, you know, we were one of the ones they picked out. Yeah. And focused on so, you know, I just have to really shout out, you know, all our all our TTT teams, and how well they do and, you know, we do other things, too. For World diabetes Day, we did a 20 we do every year a 24 hour relay. So for 24 hours on World diabetes Day, you know, you'll find a pack of Team type one in Swift, and we have our own custom kits, jerseys that were made up for us. So you know, if you're riding in there, you'll you'll see someone's Phantom. You know, we we had people that rode 24 hours straight for the entire time. So, you know, we're doing outstanding things and people notice and, um, you know, if you're hesitant to just join, I guarantee you're gonna love it. You'll love the group and, you know, we're always looking for people to race. So, um, you know, enjoy the fun.

Scott Benner 1:07:30
I appreciate sharing that with everybody. That's excellent. It really

Corey 1:07:33
if you want to get a bike trainer you're in

Scott Benner 1:07:38
like a gory I gotta cancel this podcast you want me to ride I mean, you know I I'm giving my life here for this. I sit in this chair a lot to get this accomplished. It really is. That's very kind of you. I'm, I'm going to I'm going to do the very American thing of ignoring my health right up until it's about to kill me and then try to do that is very, that's my goal. Yeah, I just want to I'll say it's like, it's like hiding from a bear. Like, I just want to see it over the eye like, oh, there it is. Now I'm gonna learn how to shoot a gun right now.

Corey 1:08:14
You just You just got to be the the, the person in front of the slowest person so the bear doesn't get you. Yeah, that

Scott Benner 1:08:21
doesn't work with heart disease as well. But I understand what you're saying. Oh, no, no, I appreciate that very much. i Wow, that it seems so outside of who I am. That it's hard for me to wrap my head around while you're saying it. Yeah, I don't I think it's possible. Coming back to what we talked about early on. It's a really it's a really similar thing. My son plays baseball in college and my free time is spent supporting his endeavor or watching it. Yeah, and it really is interesting how much at certain at the times of year when being outside would be a good thing it takes up and then it makes those other months very focused on getting the other stuff done. You don't get to during that time. I'm sure he won't play forever. So when that's over, who knows? Maybe I shouldn't laugh maybe I'll find myself in my basement riding a bicycle getting a sore on my ass. And yeah, I can't wait to see you though. See me or this or what were you gonna say?

Corey 1:09:20
Oh no, no, you I do not want to see the sore. And for anyone and for if this makes it on do not look up what it looks like on Google images.

Scott Benner 1:09:29
What should they not Google? A saddle sores okay. Yeah, I don't know saddle sores yet? Do not. But real quick, make sure you click on the links for the advertisers before you Google saddle sores because I don't want you to start vomiting before you've done the other things I've asked you to do run the ads. Cuz everyone's gonna look now I'm not I just want you to know I will not be looking. I don't care and I don't want to know. But that's fantastic, Cory. I really appreciate this. Thank you so much. If you hold on a second I'll tell you about those other episodes and you can

Corey 1:10:03
okay yeah, I was actually one that you bought that

Scott Benner 1:10:05
one on one second

A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Kaipa pen at G Vogue glucagon.com Ford slash juice box. you spell that GVOKEGL You see ag o n.com Ford slash juice box don't forget to go to touched by type one.org. Click on the program's tab go to dancing for diabetes and get your tickets for the dancing for diabetes extravaganza happening on November 13 2021. I want to thank Corey for coming on the show and thank all of you for listening and sharing the Juicebox Podcast. I'll be back soon with more

#567 Constant Struggle

Constance has type 1 diabetes and a host of other medical issues.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends welcome to Episode 567 of the Juicebox Podcast

on today's show Constance is here Constance has a number of medical issues one of them is type one diabetes. I went back and forth about whether or not this should be an after dark episode because one of her problems involves her private lady area but you're all adults you can handle it. There's no reason this needs to be an after dark episode. When I was recording it, I felt like this episode started slow and finished strong. And when I went back to do the Edit I I agreed with myself so there you go. I agree with myself. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise please always consult a physician before making any changes to your healthcare plan. or becoming bold with insulin or like you're gonna like Constance, I found her to be genuine and very sincere. I have a couple of seconds here so let me remind you T one d exchange.org. forward slash juice box go take the survey takes less than 10 minutes you just have to be a US resident who is the caregiver of someone with type one or a US resident who has type one, you answer some simple questions. And boom just like that you've helped people with type one diabetes. This show is sponsored today by the glucagon that my daughter carries. g vo hypo Penn. Find out more at G Vogue glucagon.com forward slash juicebox. today's podcast is also sponsored by trial net trial that is available at no cost to relatives of people living with Type One Diabetes. It is a Risk Screening that identifies type one in its earliest stages, often years before symptoms appear. Early detection allows you to take steps to try and change the course of the disease trialnet.org forward slash juicebox tell them the Juicebox Podcast sent you.

Constance West 2:12
Um constant constants last currently, I will eventually change my last name. I have been a type one diabetic for 13 years now. And I just have like a complicated medical history. I don't know how to you

Scott Benner 2:32
know, I know it's hard to introduce yourself. Wait, but I loved what you just said. I'm trying to figure it out. You will change your name eventually.

Constance West 2:40
Oh, yeah, sorry. I got married in February.

Scott Benner 2:43
Oh, I thought you were like I will make a conscious decision to change my last name at some point. Or I was thinking you were thinking, I think I will get married.

Constance West 2:52
Oh no, I am married. I'm a married woman.

Scott Benner 2:55
Oh, you're a married woman?

Constance West 2:57
Sure I am.

Scott Benner 2:58
I'm a married man.

Constance West 3:00
Great. I'm 2626 Yeah, I was 13 at the age of diagnosis.

Scott Benner 3:11
Okay. Alright, so you're, you're right at the, you've split your life now. 13 years with 13 years with that?

Constance West 3:18
I have and you know, it was really funny. The day that I had my 13 year anniversary. I was working at the hospital that I was diagnosed. And it was a really it was kind of crazy. My job I work as a certified nursing assistant at one of our major hospitals in the area. I'm not going to say the name because I don't think I can. And they worked there for five years. But I haven't diagnosed there and it was it was good to be there. Like I'm running around crazy doing my job. You know, I'm on my feet for 12 hours straight and I texted my husband and I was like there better be cake when I come. Like if any anniversary day. I'm in cake. It's today and he had gone out and rehab a bakery close by and he had gotten me my favorite piece of cake and I just sat at home and I was like okay, this is good. I've never spent my anniversary my diabetes anniversary actually working before so I think it was good to come full circle and just, you know, 13 years previously, my life had changed forever.

Scott Benner 4:30
Yeah. Did you have any like, like flashback key moments during that day where you walk down and you remember things?

Constance West 4:36
Oh, no, our hospital has changed completely and the 13 year time frame. We have like two new readings. And the emergency department is no longer where it used to be. And so it there were no like flashbacks. It was really funny. When When I was diagnosed my diagnosis story was I had just started junior high in junior high up here starts in the sixth grade. And so you're at a school with sixth graders to eighth graders. No, sorry. Seventh to ninth graders. ninth graders and

Scott Benner 5:26
that was a child right? Because if not your dog can speak English. Oh, that's my dog. Yeah, what did it just say?

Constance West 5:35
Mom?

Scott Benner 5:35
It did right?

Constance West 5:37
Yeah, he says mom they both say mom, they're German Shepherds. We have a boy German shepherd and a girl German Shepherd, Lucien Atlas and they both say mom,

Scott Benner 5:47
Constance, I don't want to panic you but there are aliens in your house posing as German Shepherds. And you should probably run away

Constance West 5:55
right now. I mean, Lucy alerts me if our blood sugar so she's bad.

Scott Benner 6:00
Does she say anything? When it happens?

Constance West 6:03
No, she'll, she'll jump on my chest like unusually. So Kyle, my husband works evening shift. Or actually, they moved on to night shift recently. So within the first first like three or four months, we got her. He was working a lot of overtime. And one night, she just jumped on my chest. And I mean, she was fairly like 35 pounds at the time. And she would not get off of me. And I finally did a check my blood sugar with with not with my Dexcom at the time, and my blood sugar was low. And she's continued to do that. So she will alert me at my lowest when I'm sleeping and like my pump doesn't catch it. Or my Dexcom doesn't catch it fast enough.

Scott Benner 6:54
Because it's an alien. Listen, I know you love her and everything, but you have to leave the house. Your husband works at area 51 overnight, and he brought the dogs home is all this correct? No, no, like you're lying now to protect the dogs. That's crazy. Do you have a diabetes alert dog that chained itself? Yeah. Yeah. Okay.

Constance West 7:18
And so when I like when my head hits the pillow, like I'm so busy when my head hits the pillow on. Like, ruin Kyle's home, we'll lay down to watch a movie and I'm gone within the first five minutes. And so whenever she will, like jump up on the bed, and she'll start whining. He always like pushes me because like, check your blood sugar.

Scott Benner 7:40
How lovely and sweet. It says if you're newlyweds almost What a lovely story. The dog will all fall asleep from working so hard all day, then the dog will wake my husband up to let him know my blood sugar's low, and he kicks me Ah, just like you imagined at the wedding. Don't you think?

Constance West 7:59
Yeah. I mean, we've we've been together and living together for three years. So I mean,

Scott Benner 8:06
you Imagine all the people listening are like the shine rubs off in three years does it?

Constance West 8:12
Yeah, well, I've been married since March. I don't know it's no different than when we weren't married. So

Scott Benner 8:17
he kicked out when you were single as well.

Constance West 8:20
I mean, is it single? If you're in a relationship and you live together?

Scott Benner 8:25
I mean, I think technically it is. Yeah.

Constance West 8:28
I don't know. I always thought of myself as married to him anyways, because we were just like, together.

Scott Benner 8:34
There was no constants by by way of where you grew up. So I can't I can't trust your social construct ideas. Because

Constance West 8:43
Oh, no, that's not that's not a norm over here. I can tell you that for sure. Yeah, nope, nope. Nope.

Scott Benner 8:52
Alright, so you're 13 you're diagnosed it's only 15 years ago. So you came out with good insulin right? What did you get?

Constance West 9:03
We got human login. lantis. Actually, can I just backtrack for a second?

Scott Benner 9:09
You can say no, I'm just teasing you.

Constance West 9:13
And the hospital of I did have like this last anniversary. And March. It was really funny when I was diagnosed. So like, we had been trying to do a workup for actual cancer because I was so sick and like, there is not really anything that the doctor could figure out my PCP and so and mana was also going around at the junior high was and and so this was like a several week thing. I was so tired. I was not really actually paying a lot. I was drinking a lot. And they couldn't figure out what was going on, but they never did a glucose test. And then all of a sudden one day where And they're and they're like, Oh, we run an aliens t test. And I actually found that a winsenior a one C is 10.3 you need to go to the hospital. So we go to the hospital and like, we're in the emergency department and we're waiting for that new chronology team to come back and some like general surgery resident is just like looking at me to make sure I'm okay as we're waiting for endocrinology to come down from clinic. And he goes up in your mouth because they're doing their system check. And he goes, Oh, my gosh, your uvula goes the wrong way. And then, like I had a whole herd of residents who came in through in and out of the emergency department room as I'm waiting to see the chronology and they all just want to, like open my over wanted me to open my mouth and check my uvula because they've never seen that you do that went forward and not backwards.

Scott Benner 10:51
Listen, does it really does it still do that? Yeah. Yeah. First time, we're aware of it.

Constance West 10:57
Yeah. And so that was like, that every year will get me because that's really what I remember from that day.

Scott Benner 11:05
Or you feel it goes the wrong way. Oh, my. That's so bizarre. It can't even be the title of the episode. You know, one time constant. Somebody said to me, can I tell you a funny story? And I was like, Yeah, they told it. And I thought the whole time they're telling I was like, This is not funny.

Constance West 11:22
Maybe that wasn't funny. It's always funny to me that

Scott Benner 11:26
I was amused This time, I'm just telling you there was the one time while the person was telling the story, and all I could think was like is not funny at all. So you're okay, so tons of people look at your uvula. I also am interested and I think everybody should be you can tell a person who's living with autoimmune issues because you're like winning you're a funny story. People thought I had cancer. But it wasn't anyway, I just have and what do you have? You have type one, but you have other stuff too.

Constance West 11:59
Yeah, so I have type one diabetes, I have hashimotos I have I always forget and so I had been told that I have sjogrens disease, which is your immune immune system attacking your glands that secrete so like your mouth. And then those vagina Sorry, I'm gonna say that word a lot. And then Lycan sclerosis, which is the immune system attacking the genital tissue and

Scott Benner 12:38
Okay, so you're a little soft spoken so let me just say a couple things first, so you had so I never can say this because they put dots above letters and when they do that you've lost me but sjogrens disease show show grins I just order of your immune system identified by two most common symptoms dry eyes and dry mouth. Do you feel like you have that or you're just somebody tells you?

Constance West 13:05
No so i i do have dry mouth and I do have dry eyes and then they can do an AMA and anti nuclear antibody test which is like kind of the standard and at the time that I was told I had that it was it was showing positive maybe it was for something else at the time. But I have a neurologist that just went and did labs and my ama is completely negative so he's like, I don't think you have shell grinds anymore if you ever had it, but I do have constant dry eyes and constant right now

Scott Benner 13:37
can last for years or be lifelong. Now. The next one lynchin school right skin lichen sclerosis,

Constance West 13:48
yes, lichen sclerosis, or we can call it LS because it's also called bat.

Scott Benner 13:53
Why don't we do that. So I want to say sclerosis again, in a long term is a long term skin condition that mostly affects the gentle and anal areas. It causes your affected skin to become thin, white, and wrinkly. It turns you into my grandmother. It is due to inflammation and other skin changes in the affected area. Common symptoms include itching, irritation, and painful sex. Wow. Yeah. Yeah, less than a rare condition. By the way, which always makes it feel worse in my mind, because they're like, you know, all the countless millions of people on the planet. Only 200,000 a year get this thing and they're like, great. So what's your first diagnosis in your life?

Constance West 14:40
Well, I also have pelvic floor dysfunction

Scott Benner 14:43
on pelvic floor dysfunction. That pops right up on Google. That's interesting.

Constance West 14:52
And then my, my pelvic floor muscles are hypertonic

Scott Benner 14:56
you're okay? your pelvic floor muscles are hypertonic Yes. And that doesn't mean they're like a bubbly drink at all.

Constance West 15:06
No. So hyper just like high blood sugar hypoglycemia, they are. Constantly contract it. Sugar high, or high tone.

Scott Benner 15:16
Okay, pelvic floor contractions can also be measured internally with a paragon meter, which is a tampon like sensor that can be placed in the vagina or rack them. I mean, they say, only go one way with that can also be used to diagnose pelvic floor dysfunction. Have you had this test?

Constance West 15:40
Yeah. So what is it called specifically a urodynamic test. So they like go in. And what they do is they put a Foley catheter in to the urethra, and they start filling the bladder full of normal sailing. And then they also have the little probe that you were saying, and the vagina, and then they measure how much the bladder can hold before it starts contracting and then making the pelvic floor muscles contracting. And at that time, my bladder could only hold 62 L's before it started having contractions equivalent to childbirth. And so 62 ml is two ounces.

Scott Benner 16:25
Okay, let's go slow, because this isn't happening to me, and I'm getting upset. Let's go with what was your first diagnosis? And how old were you? Was it the diet? Was it the diabetes?

Constance West 16:38
It was a diabetes at 13.

Scott Benner 16:39
Okay. Which now seems like passe if I if I may say,

Constance West 16:45
No, honestly, yeah, my diabetes is the only thing like, people are like how you do it? I'm like, Oh, no, like high right? not do it.

Scott Benner 16:54
Yeah. Honestly, it probably is the least of your issues, right?

Constance West 16:59
Yeah, I think so. I mean, other than like, when you have a really low blood sugar, and you feel like,

Scott Benner 17:05
right, no, no, I understand. And by the way, it's cool that you curse because you got my you're supposed to go you can go from one way to the other, but not the other way. Joke earlier and you left under your breath. And I really appreciate it because it's early morning, we should tell people it is a day I'm here is the earliest i think i've ever recorded an episode. Not to say that it's super early, but it's five o'clock where you are right? Yeah, yeah. Right. Yeah. So we thank you very much for doing this like this. It was and what happened? You had a doctor's appointment, and we kind of got our things messed up. But my schedule so full, like, there's not a lot of options. So yeah,

Constance West 17:43
I have a doctor's appointment, and I thought that it was Eastern Standard Time. Which I was like, Yeah, fine. 5am my time No problem, but it was Pacific Standard Time.

Scott Benner 17:52
Yes. It's no big deal. I'll sleep tomorrow. Great. Yeah, it's not a big deal. Actually. I'm joking. I'm fine. I think you might give me a nice day. I should probably get up earlier to begin now. People are like, wait, he's not up at eight o'clock. Usually I am up at eight o'clock. I'm just not usually working at eight o'clock. Yeah. Alright, so what comes after the type one?

Constance West 18:13
Um, what was really cool about my NGO, she was constantly when they withdraw, they even see she would also draw t three and TSH and so she caught my hash not not even hashimotos but hypothyroidism really early, so I was on 25 micrograms of love of pyroxene. Until then, like from, I think it was 15 I was diagnosed with that. So 15 all the way to 20 before we even need to do it dose change.

Scott Benner 18:49
really early that she caught

Constance West 18:51
it super early. And then I'm 22 now it's just been a freakin roller coaster of trying to get it under control. And I think we finally have

Scott Benner 19:05
and doing it just with T four.

Constance West 19:09
We have no way I do love and by Roxanne and then lift those hierarchies. By running why Oh fine. By running?

Scott Benner 19:19
Is that a T three? Yeah. So not sight. Oh, have you tried sight? Oh, no, no, no. Okay. That's just a brand thing. So now you have a good seat. For people who don't understand or test my remembrance of this. You are you don't you can't you're not making the T four but you're also having trouble picking it up. Right? So the T three helps with that. It's all in the thyroid episode people. It's one of the one of the stranger things that I'm not good at remembering is that

Constance West 19:51
Yeah, so I believe if my nursing education has stuck in my brain long enough, t three is converted to T four To go to the south,

Scott Benner 20:01
there's there's there's something about when you don't convert it when you don't pick it up well you can,

Constance West 20:06
right. Right. And I just I think what it is is just it's not fast enough. It just doesn't work fast enough and I have seen a difference since starting the lie of irony like I've always had fatigue and the fatigue is a little less again I'm a very busy person, but I'm just constantly fatigued if I could sleep all day long I would probably sleep 20 hours a day.

Scott Benner 20:30
That is a real serious implication of thyroid issues that people are just they're tired even when they get their medication right they can still be tired Yeah, yeah did t three give you a little kick? Or no?

Constance West 20:47
Does anything we just saw my end last week I was like can we titrate down on the GSA can go up on the on the cheap three a medication on like I just want to see if that's more helpful because at this point, it's working But could it work better to push boundaries? Yeah, I have

Scott Benner 21:07
to be careful with the what is it I'm thinking of like you can start getting like teeth grinding or heart palpitations. Stuff like that.

Constance West 21:18
Yeah, there's a very narrow therapeutic range for thyroid meds so I'm aware and I do get those if the dose is off at all I will get them and they will come full force and and just message and ask for a lab and then they adjust but she was like yeah, we can do that. And it should be about the same amount that your your body should normally make but your thyroid toast so

Scott Benner 21:43
great. Okay, so do you have any other problems like in that those years getting it together where your your hair keep falling out? Or issues with weight or anything like that?

Constance West 21:56
I never had issues like wait until recently. I've always had been hair does get thinner. They did find a nodule on my file, right? So we get that checked every year and make sure it's not cancer. cancerous.

Scott Benner 22:13
But yeah, just like it. The nodules are sorry to cut you off the nodules indicate hashimotos Yes, right. And that's, that's a common if you have hashimotos you're gonna you will likely see so what do you get like ultrasound? Mm Hmm,

Constance West 22:29
yeah, but if we they also tested for antibodies and they found them which was the confirming diagnosis because you can have a nodule without having

Scott Benner 22:39
the antibodies? Yeah, right. Okay. All right. So what came next?

Constance West 22:47
What came me sjogren

Scott Benner 22:55
sjogrens was next. Alright, so can you kind of put into context for people like dry eyes dry mouth is it a constant is it something it flares How did it How does it present?

Constance West 23:08
Yeah, it's kind of the dry mouth is definitely constant. And so what they tell you to do is say like either eat candy Keep your mouth Keep your mouth full of saliva by eating candy throughout the day. Sorry I have diabetes that I can't just be candy willy nilly so that was never an option and so chewing gum was how I would try to keep it kind of what and keep your mouth with the amount of saliva it's supposed to have and secrete enough saliva Jimmy able to eat and then the dry eyes It's they just it's kind of it can be intermittent like from screen all the way through summer usually it's pretty bad when it gets drier

Scott Benner 23:59
and that's used like wedding drops or

Constance West 24:03
and I have when it gets really really bad I have specific ones for that I mean suppression of that a go lacrimal gland I think it is to like actually moisten the eye I'm not exactly sure how it works and I just said the completely wrong thing um but yeah, so it's like an immune suppression drug for your eyeballs doing it's really bad I use those but yeah, there's not really anything else that they can do for

Scott Benner 24:41
the dry mouth just the irritating or I guess it could have other impacts too right like you can end up with like more cavities because of that there's

Constance West 24:49
right and so that's what happened was I got more cavities and I maybe maybe the sjogrens has been lifelong and it just intermittently enough that it which is sticking my teeth but by the time that I was 18 I had shown many cavities and at this time I mean I was looking at my a Wednesday when I was diagnosed was 10.3 but I couldn't go back and see labs all the way back in the highest that I ever had after that was like an 8.6 so my diabetes has never really been out of whack far yeah, it's not it's been out of whack if you ask my parents but whatever, um, and my diabetes should not have caused it their dry mouth or the decay and they're not that happened and so the time that I was 18 I had to have like $30,000 worth of dental work done which insurance was did pay for which was great. Because there was just so much decay going on, I'd show fast. And then at the age of 20, or vine, I my two front teeth, I was I was I was working i think i think i was at work and I was eating something and just both of my two front teeth just snapped. Holy crap. Wow, they just snapped and I had had a couple of other cavities that were working their way through on the upper and the bottoms after all of this dental work. Three years prior to running to the dentist and the dentist was like well we can spend another $30,000 trying to fix all of these or we can just take all of your teeth out.

Scott Benner 26:45
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Unknown Speaker 30:17
And Kp ventures

Scott Benner 30:19
constants, I have to tell you when I said that I didn't know that I have my hand up like I have it on the Bible in a courtroom. I just went, when I heard dry mouth, I thought, oh, like, you know, if people sleep with their mouths open, for instance, a dentist, they'll say that's one way you might end up with getting a cavity because the bacteria and you feed it with it anyway, but but I didn't know you were gonna sell that. That's insane. Yeah, wow. No kidding. So they just took out your teeth and set you up with dentures.

Constance West 30:52
How old? Were you? 21

Scott Benner 30:55
Happy birthday. So yeah, a lot of people go out drinking, or some people get dentures. So I'm going to stop for a second before we get to the other issues and ask you buy them five years ago, 21 years old? What's the psychological impact on you? With all this? Like, how do you handle this?

Constance West 31:15
You know, it's it's just the card that I was given. I there's no way to handle it. I can't stop and break down. I do stop and break down like when something's really affecting me. I do and I cry and I cry and cry and my poor husband will just sit there and try to help me and he has no idea what to do. And then I get up literally it'll be like okay, I'm done crying now I'll get up and I'm like, Okay, well I got to go on I got to keep doing what I got to do. And that's that's it like there's my motto is like every day gets better like yeah, today right now this feeling shocks. It sucks. But I'm doing things that will have a prolonged effect in my life. And hopefully I won't have to be here forever. And it's it is just kind of like what gets me through the day. I will say you usually ask people if there's any other autoimmune funky stuff going on and families. I'm the only one with anything wrong. I am one of six children. My parents don't have any siblings. Their parents are mostly all dead. But there is nothing autoimmune. Oh, sorry. My great, great grandfather we've learned before he passed away that he had hypothyroidism But it wasn't until like way later in life, he had only been on it for like, two years.

Scott Benner 32:49
Like mental issues even that.

Constance West 32:51
I mean, my dad, um, my dad had dental issues, but his Purdue to a dentist in his 20s leaving, like a needle in his gun. Yeah,

Scott Benner 33:07
okay. Don't say that again. Okay. Look, none of us want you to say a dentist let the needle in your dad's gum again, because that is going to kill everything. That was the chilliest thing anyone's ever said to me on the podcast. I was like, it just ran right up my spine. Okay, all right. Hold on a second. Well, the truth by you really got me with that one. The. The truth is, no one else in your family can have an autoimmune disorder passes because you took them all okay? You literally

Constance West 33:35
literally I joke with people and I'm like, I just want my genetic lottery.

Scott Benner 33:40
You You just you're greedy. And you took every one of them. Okay, so we're left with like, Hey, can I guess was pelvic floor next?

Wow, look at me getting good at this. All right.

Constance West 34:02
Well, I would say no, I would say these things. So I would say pelvic floor dysfunction as long as I can remember is the same as lichens sclerosis, and I'm going to say with Lycan sclerosis, the only way to actually make a current confirmation for Lycan sclerosis is they do a biopsy of the skin tissue which might give you a tingle as well up your spine. So they did want to recently but I have been on topical steroids for that in the area for well over a year and they had me stopped for a few weeks and it came back as contact dermatitis, which is just inflammation of tissue. And it didn't come back as like an fluorosis but with the way that my tissue clinically looks, the doctors like we're just gonna retest in a couple of months. If you can handle being off the steroids and see if it comes back positive because she's like, there's no way this is isn't like in sclerosis. But the only way to like actually get the tissue to kind of go back to its normal is just up the stairway. But let's go back pelvic floor dysfunction, and the lichen sclerosis. So for as long as I can remember I would tear in the genital area and not like real bad. But it would just happen and then it would do a little awkward floor and it heals, it's fine. And pelvic floor dysfunction, I have always had like heavy periods, which is part of the hypertonic pelvic floor. And so basically what it is, is like my pelvic floor muscles, they're a big bowl and they hold like they hold our the uterus and the vagina and then it holds the bladder and everything kind of follow the diaphragm. While mine is literally like above my navel. Basically, like my pelvic floors so far up, it's so tense, it's so far up. And so it's always caused issues for sex, I just didn't know that was a thing. Um, and so two years ago, I out of nowhere got a kidney infection. And I think that kind of threw at all for loop. Because sense getting that kidney infection. And I honestly have no idea where that can even infection came from, I actually think it's from the lakes here. Because I was swimming in the lake a couple of days prior. And I, there was no way that I would have I've never had a kidney infection before. And so I go in, because I started King blood one night, and they do the scan and everything and you're like yeah, kidney infection, and it gets worse and it gets worse because like when you go in with your symptoms, it takes three days, at least for the antibiotics to kick in. And it was over a long weekend. So of course, you can't get into see anybody right away, and the antibiotics weren't working. It's kidney infections are so painful. And then once that was relieved, I always had like, in my urethra would burn, burn, burn, burn. And so I was still having that symptom of this burning urethra on and off. And then I started having cramping. That will literally drop me to the floor. And so I was referred to a euro gynecologist and recipe which is putting just fluid in the bladder to check if there's any tears from the infection and there wasn't and so they kind of just sent me on my merry way. And said, Here, take this medication if you are having the urethra spasming, and it'll be fine. So I dealt with that. Up until last July, so we're talking like a full year.

Scott Benner 38:25
I have a couple of symptoms. So the um, they the steroid medication and the issues with the LS is that internal or external? That's external, external, okay. And the pelvic floor like what are the real world implications of it, like in your day to day life? How does it impact you?

Constance West 38:50
Yeah, so, um, I can't, we can't have sex. I will just have spasming. Again, it'll kind of just like, drop, I kind of have to like, drop whatever I'm doing. It used to literally dragged me to the knees. It doesn't do that anymore. So I have like a team of doctors that we're all kind of like working together, but not in the same clinic. So I'm not actually on the same team. But I I so we had COVID that hit right. And so I went from not seeing my PCP at all. And I couldn't get into an appointment with her like they weren't doing in person appointments, but I had a tear that happened in March of last year. Yeah, March 2020. That lasted all the way till like, middle of June. And I mean, it was pretty deep. It was pretty bad. And like okorafor wasn't working and I call the office and I was like I need to get in, I need to see somebody and I need to see somebody in person because I need somebody to look at this like, this is no longer like it was so hard because it's like, oh, we're in the middle of a pandemic. And the pandemic was so new at that time. But I was like, I cannot do my daily activities of living because it is just so painful. And so I went into my PCP, and she looked at it and she was like, This is not my specialty. And she sent me back to the Europa ecologist. And the euro. gynecologists was asking all these questions and just questions that they hadn't asked before or maybe I wasn't getting the right answers. It's so hard to know which, which it was. And she was like, okay, she looked at everything. And she was like, Oh, my God, this is not my wheelhouse, either, like, I cannot help you here. But I can help you with the like urethral spasming I was complaining of in feeling. And finally, we had we scheduled another follow up appointment. Once I got the confirming diagnosis. She sent me to a VA the general dermatology of general dermatologists,

Unknown Speaker 41:18
which there was,

Constance West 41:21
I had no idea. But the funny thing was like, I went to the original dermatologist, but i three days prior, I had gone to your dermatologist as well, because I had a couple of moles that popped up and were weird. And they were scaring me. So I went into the dermatologist and she didn't look at my bachelor scan at all. And so this virginal dermatologist looked at everything. And she was like, yep, this is like an sclerosis. But the urogynecologist had already started me on, it's helpful. They does all the topical steroids. And we were doing that at that point, because I think it took three weeks to get into her. I had been doing it every day for three weeks, which was too much of it to get a biopsy. So I

Scott Benner 42:10
got a couple of questions. So when you say you can't have sex is that constantly or during flare ups?

Constance West 42:18
I have not had a time that I've not been cleared up.

Scott Benner 42:21
Okay. And so when, when you I'm assuming you've tried sex?

Constance West 42:27
Yeah. And I happen. It's so funny prior to this pelvic floor dysfunction. My husband and my husband had a couple, like long term girlfriends prior to me. Were actually like old, high school sweethearts, just an old story. That takes quite a while to tell. But he had several girlfriends and he was like, I've never not gotten them to orgasm, and I've never I've never gotten the I never orgasm so fast. Because my husband Oh my god, he'll orgasm in two seconds. I'm not kidding you. And he gets fired me. It's the worst thing ever. Especially if I'm trying to enjoy myself. And so we always forget that was something wrong with him. I was like, there's something wrong with you. We need to get you into some sort of therapy. So you're not just going every two seconds.

Scott Benner 43:29
So you're in bed, so you're trying to have intercourse and you're in pain.

Constance West 43:33
I'm in pain. Yeah.

Scott Benner 43:35
But the implication to him is there's like 7000 vaginas on him. Right? And yeah, doing the hard work. And so he Yeah, like, okay, so yeah, I'm gonna have to beat this out, I imagine but so you're like amazing stuff, right? No,

Constance West 43:57
no, it's it's funny. I I don't know if this when I was 18. I was doing my CNA classes. And the first time I actually ever saw a penis was when they were shoving or urethral catheter in. JOHN at one of our major hospitals, and I was like, gross. So penises really grossed me out? Honestly, I'm gonna be honest.

Scott Benner 44:17
We did. Let me ask a serious question on that is Was it hard to date for you because of all of your issues.

Constance West 44:26
I'm hard today I've never been one to like date date. If I went on a date with the boy it was because I already liked them and saw something in them that I thought would be acceptable as a boyfriend. I had one relationship that lasted for years. And then the one previous to Kyle was a year and a half and he ended up ghosting me just out of nowhere. And then I've been with Kyle for three years.

Scott Benner 44:58
So what do you do? Do you just take One for the team once in a while. Yep, sure to I'm sorry.

Constance West 45:05
Yeah, I mean, he tries god he tries as hard as you possibly can. And so a week, we can have sex. I don't want let's see. How do I explain this?

Scott Benner 45:21
I don't know. But go ahead and try.

Constance West 45:23
Yeah. Um and I have no qualms about explaining it, but um, let's see, okay, so things will get there will be touching and touching is sometimes okay. I really have to be in the right mindset. I have to be calm. They gave me some muscle relaxers that are really helpful. So it's not like we can't just out of nowhere spontaneously have sex. I have to take these muscle relaxers. 45 minutes to an hour beforehand, which does not work very well with my husband when he wants to have sex. I'm like no, let's do it. Now

Scott Benner 45:59
does it turn into cardio you take the muscle relaxers then run away from him for 45 minutes

Constance West 46:06
but the muscle relaxer really does help and so we'll take them a little slow relaxer and kind of will help relax everything though he will touch me and try to get and like It'll take a while to get the juices flowing. How would you say yeah imaginal juice flowing?

Scott Benner 46:30
I think if I said that I don't think it would go over well but I'm sure it's fine.

Constance West 46:37
To get the juices flowing I want that if we're okay then he'll try to penetrate if you want to get technical and if he doesn't come within 10 seconds and my body will actually reject him like my muscles will reject him out of my body

Scott Benner 46:57
No kidding

Constance West 46:58
no not kidding at all. That happens all the time.

Scott Benner 47:02
Okay hold on do you I mean asking because of the part of the country you're in I guess more than anything Have you tried like drugs like recreational drugs?

Constance West 47:15
No I don't I don't

Scott Benner 47:18
you don't seem like a person who would try that which is but I wanted to see if it was bad enough that I honestly thought to myself that was going to be your answer but but I just thought maybe it's been Have you ever talked about it

Constance West 47:32
like in therapy know like

Scott Benner 47:34
between the two of you like maybe we should try smoking weed and doing this or something like that.

Constance West 47:40
Oh, I mean my husband's like sweet I just don't i well i could get drug tested at anytime I'm in nursing school and I'm also working

Scott Benner 47:48
so so not that I'm saying to do this but has does alcohol have any impact on it?

Constance West 47:53
Um, so I can't drink alcohol either because I also have chronic yeast infection.

Scott Benner 47:59
Of course you do right? No, I don't know why I didn't just assume that I'm sorry. I'm

Constance West 48:04
literally chronic from well before even being diagnosed with the diabetes I can remember having yeast infections and they've been ongoing since so they're it's like this with my my, which was the reason I emailed you and asked if you wanted to do a after dark episodes. So like I have the chronic yeast infections that have never gone away. I have dumped every infectious disease doctor I've seen are still trying to figure it out. And then I have the lichen sclerosis, which came back as contact dermatitis, which is its own thing and then the pelvic floor dysfunction. When I have a seizure when I have a tear, which is another word for it because fissures and tears The use gets inside it makes it more inflamed which sets off my pelvic floor.

Scott Benner 48:51
Wow. All right, well, well, this is a this is an after dark so I'm gonna just I'm gonna ask you another question. That seems like an obvious question. Pretty sure I know the answer to but I feel like for we need to understand fully doing. No, I wouldn't either. By the way, if I was you just I'm just I was just like I would ask. Are your hands super soft? How does this work?

Constance West 49:20
My husband's just really patient.

Scott Benner 49:21
Well, no, he's the same. I'm pretty certain. By the way,

Constance West 49:28
it's so funny. It's so funny. Our girl dog Lucy she's in heat right now. And she told me as I was leaving for work yesterday, he was like she got on top. Alison started helping him the other day. And I was like, same thing when I'm trying to have my period. I just want to help you. I was like, it's the hormones that are released me. I was like, yeah, it's done, and I just left.

Scott Benner 49:50
None of this impacts your desire, though. I mean, I'm assumed like, Oh,

Constance West 49:55
no, I love my husband. I want to have fun with my husband. He Doesn't my brain doesn't work with my vagina?

Scott Benner 50:03
Do you do stuff to? I'm just gonna ask you like, do you do things that, like, do you, like, bring like the back of your knee into it? Or like what do you do to like any? I don't even know what to say I'm a bit of a loss here. I only know the classic ways to do it. So, but do you see what I'm saying? Do you guys get like try to figure something out? Or do you I mean,

Constance West 50:30
we've definitely definitely tried so I, I, in October, I had surgery, they put in a neuro and nerve stimulator of my sacral nerve. So like usually they'll do this for people because pelvic floor dysfunction is usually usually happens after pregnancy, right? And it usually happens in the elderly population. And again, that's usually usually hypo tronic muscles where they are have just been too stressed either due to age or pregnancy that they are not tight and mine are too tight. So if you were to like, if we were to turn on the video, I could show you like usually your, your pelvic floor muscles actually sit in your pelvic floor where you're like, you know, your legs Connect, you know, it says they're mine. It's above like my belly button and basically, and so the pelvic floor muscles and move kind of like all of the organs up with it. You could say, constants are we had

Scott Benner 51:34
when you said yeah, if we had the video on you could show me You met with your hands that you were gonna show me? vagina, right?

Constance West 51:40
No, I don't want. You don't want to. Believe me? I've never personally seen it. But I'm sure you don't want

Scott Benner 51:49
to tell you like because if that's where you were going, I've recorded like 600 of these and that would have been the first time somebody said, if you put this on and show you my genitals. I knew you meant like you were making some hand. Just Yeah, yeah.

Constance West 52:06
Anyways, yeah, we did this like diary log or me peeing, and like the spasming I was feeling. And at that time in October, I was paying like 16 times a day, I'm in my first semester of nursing school, I'm driving three hours, at least every week I I work a very high demand job that I have on my feet for 12 hours, three days a week right now. And I'm going to be a bedside nurse, you know, you're on your feet for three shifts for 12 hours a week, once I'm done with nursing school, going to the bathroom 16 times a day, is not effective. To get any of that done. Like let me just be clear, you're in the bathroom. your urethra is spasming as you're trying to stop peeing, and then your pelvic floor contracts. And it's just you end up sweating sitting there on the toilet. Like you're, you've just eaten really bad takeout? Like, right 16 times a day. And time today,

Scott Benner 53:12
I want to tell you something. There's something interesting going on about you, right? Because at your core, you're kind of a proper young lady. And no, but no, no, not hold on, hold on. But you have so many things going on. You really don't have the time to be proper. And you've read right, but I think you have it. Do you think if none of this had happened to you? Would you be a little bit of a teetotaller? Or do you think you'd be going crazy? What do you think your core feeling is about life?

Constance West 53:42
My core feeling about life? I think my sister's kind of like me. Yeah, I think I would kind of be the same thing. I just have a lot less

Scott Benner 53:50
going on. Yeah, no, but your attitude is impeccable. By the way. Like I seriously, you have so many things going on with you that if it was the 1600s people would think you were a witch and put you on trial. Like oh, yeah, sure. 100% you'd be at a witch trial. So she makes men's Pierce's explode. I think that alone would have gotten you burned. So um, but you have an amazing attitude, like even wanting to like tell somebody about this is is really lovely. Because you're not the only one I would imagine. And I can't imagine that a lot of people are excited to run around and tell these stories. And your husband is obviously a person who loves you, which is that I mean, that's lovely in and of itself. Especially when I asked about the mouse stuff and you said you because I just assumed that's how you guys got through.

Constance West 54:47
Now, you know, he'll ask me and I'm like, Nope, not today.

Scott Benner 54:50
Yeah, he's a boy. We asked constantly. It's literally like one of our headcount. I was at a funeral once and that's what I was wondering about. So Oh, God. We're tortured.

Constance West 55:02
No, I'm like you have lefty, like, go hang out with lefty.

Scott Benner 55:08
Do you make most of the money?

Constance West 55:10
I'm not currently he does, but I will in a year,

Scott Benner 55:14
I was just thinking like, maybe he was like, all right, but such a good. What made you want to be a nurse, I'm assuming having scads of medical issues.

Constance West 55:25
Oh, it was definitely the care that I got in the hospital when I was diagnosed because the diabetes educators that I had, as well as until I was 18, with the care that I had at the hospital was diabetes educators. So they were just wonderful. And I hated my endo that whole entire five years, I had the same endo minus the times that she was pregnant, and she was pregnant, like three or four times when she was on leave, but um, my diabetes educators were just wonderful. And I find as a type one diabetic, at my core, because if you really were to boil me down to one disease, I would just say type one diabetes, because it's the it's my longest lasting disease, it's not going anywhere, it just, it can affect everything else. And I just want to be helpful to future diabetics and families. And I, I think that's why I enjoy listening to your podcast so much is because we speak so much truth. And like, diabetes educators, and a lot of times it's because I can't speak the truth of what diabetes is actually like, and the peaks and valleys. But just being that person and knowing that these families were going through such a, it's traumatic, it's shown dramatic having diabetes on a daily basis, I feel like it's traumatic. Some days, not every day, but it can be dramatic, and just having somebody to be like, Okay, this is what we're seeing, this is what we're doing. what's not working, because we would do that with my, with my certified diabetes educators, the nurses, because they had had diabetes for forever. One of them Her name was Barb, she's still actually at the hospital. And she was diagnosed at the age of four, you know, and so if we were ever having any problems, we would call her not the hospital and say, Hey, this is what what's going on? What's what what do you think? What should we do? And it's just, and the only way to be a certified diabetes educator is through being a nurse or through be a nutritionist. And I've taken nutrition classes and classes, I could have become a nutritionist, but in case something were to ever happen to my husband, and I was a single mom, and I needed to find work as a nurse, you can find more work than as a nutritionist, so I went with nursing. Hmm,

Scott Benner 58:01
good for you. That's really I mean, it's the whole stories mean, it's terrible. Obviously, I have nothing but compassion for you. But the way you handle is is astonishing. Why do you think why do you think you're able to do that? It's a question nobody ever is able to answer but

Constance West 58:21
yeah, and doctors asked me that too. They're like you can't be living in a body with all this happening going on at once. I'm like the head guy. Can I share Yeah, I'm doing it and I'm doing everything else that everybody else is doing so I can do it and I am during it. It doesn't mean I don't have times that stop me and I have to kind of readjust what I'm doing. But I I honestly think it's just like, I lived for so long with the diabetes know when I was diagnosed, my thought was okay, I'm just gonna make it to 18 you know, like we were given basically, and this is 2008 I don't know why the doctors did this, but they were like, you're probably gonna end up dead sooner than later. And again, yeah, yeah, they they gave my parents a max of 30 is what they said. Really? Really? Yeah. I don't know why.

Scott Benner 59:23
stoned out of their mind they can't think you guys gonna stop smoking the weed long enough up there right?

Unknown Speaker 59:29
Do you know Ben?

Scott Benner 59:31
What's now that didn't stop anybody in the upper northwest to be in the elite? Do you think that we've been illegal stop people from smoking weed?

Constance West 59:40
Oh, no, no, no, no. Everybody's smoking and now anywhere you go.

Scott Benner 59:45
Just it's it's just everywhere. It's a cloud of wonder like well, you guys should be able to get decent stuff. It shouldn't be that bad. No, I mean, it's just listen I've spoken to a lot of people. And I don't think that people have a good attitude, or what would be perceived as a bad attitude on purpose. I don't think anyone's reaction is mindful. Meaning I don't think something happens to somebody and then they go, Well, let me decide, will I be upbeat and cheery about this? Or am I gonna act like a prick? Like, that's not what happens, like, whatever your reaction is, is your reaction. But I mean, were your parents like, fantastic parents? Did you have like an I deal with childhood until you were 13? Or do you just have is this just a good disposition? Is there anybody in your family that has your disposition that you could point to? No, you're just gonna live your life like this is it? This is what I get. Yeah.

Constance West 1:00:48
And I think again, diabetes, because like, I could literally die in the middle of the night, and all blood sugar I have my ANC just came back the other day, 6.0 I am flying, you know, but something could happen, you know, my site could fail. And before I wake up, I die from some, you know, I can get I live my life. I was like, I could get into my car, and I could freakin die because some moron hits me, you know, and that's just kind of like, I'm going to do the best that I can. I'll be here like, and it is what it is like, diabetes is not going to stop me. And there have been several people who throughout my life have tried to stop me because of my diabetes, mainly educators and telling me, I wasn't worth the time. I wasn't going to make it. I was too dumb. And it just wasn't worth their time because it would take too long and I wasn't worth it.

Scott Benner 1:01:41
causes. I've been speaking to you for 57 minutes. Now you've not come off as dumb once. Why would someone think that about you?

Constance West 1:01:49
I'm probably because I was 13 at the time. And all 13 year old. Are

Scott Benner 1:01:55
you going to? Where was your endocrinologist in the middle of the woods or something? What? Where did you? I mean, I watched Grey's Anatomy. So I think of Seattle as being the hub of good health care. Is that much.

Constance West 1:02:08
I mean? I have I could. I could talk to you for

Scott Benner 1:02:17
this. I'm laughing at myself, because I have co mingled a television show with reality in my mind. I was out in Seattle recently. And no, yeah, right. And then I was disturbed to find that I think Seattle grace from Grey's Anatomy is actually a set in Los Angeles and not

Constance West 1:02:39
in Seattle.

Scott Benner 1:02:40
So people were like, do you want to see the Space Needle? I'm like, No, we're Seattle. Grace.

Constance West 1:02:46
No, it's not a real hospital at all.

Scott Benner 1:02:48
Yeah, I found out It's okay. I was actually so busy when I was there. timewise I didn't see anything. Well, that's unfortunate. Yeah, I saw that mountain that finally. Yeah, I love the there's a I think I've mentioned in another episode, but there's a colloquial phrase that people use around there. They say when the mountain is out. It doesn't rain here. Yes. But when the mountain is out, isn't actually a sensible statement. The mountains always out. It's when the sky is clear. But yeah, the idea and it was lovely. Like the first person that SAW said it to me, I thought like, Oh, that's nice. They don't understand English. And then that's fine. But then when the fifth and sixth and 20th person said, oh, wait till the mountain comes out, so you can see it. I was like, Alright, this is the thing these people say. Did you see it? Did you see Mount Rainier? One day? I got a really great look at it. Yes. Is it not breathtaking? It's astonishing. And I will y'all see

Constance West 1:03:47
the mountains are like dirt compared to us. So it's amazing.

Scott Benner 1:03:52
I think the most fascinating aspect of it was that we arrived on a Saturday night. And I remember being a traffic light and it was late at night. Don't get me wrong, like one o'clock in the morning, right? So it my time so it was probably 10 or 11 your time. I was exhausted, we were sitting at a traffic light. Can't see anything, obviously because it's dark. The next day you're out I'm sitting at that traffic light again, I don't see anything. Three and four days go by. And finally we're at this place and I get a text from from Chris, the guy that put us up for the first week for put me in coal up and then coal moved on to housing, but he said Oh, when you get out of there today, you're going to see the mountain and I was like, Oh, great. And what astonished me was that in the 35 minute ride back to Chris's home from where we were, the mountain was almost always visible. All I could think is we had taken this ride about a dozen times already. And I had no inclination of where the mountain was. And that was fascinating to me. Like just to turn a corner and be like, Whoa, that was not They're yesterday so I get this thing I do get the saying when the mountains out because it feels like it just decides to appear. Literally Yeah, it's very cool. There really is. Anyway Is there anything else wrong with you that we didn't talk about?

Constance West 1:05:20
My husband has bipolar

Scott Benner 1:05:23
that's not that's not you though.

Constance West 1:05:25
No, but I mean I have a sunny disposition and you're in your thought process and others would not Um, but yeah I it's funny because his his you know, like a chronic illness and we just got the diagnosis in like a finally, we've been dealing with really bad severe depression. And I don't get me wrong as a teenager, I was definitely like, defiant, I would make my mom mad because I would give myself and for for my genes or your on my blood sugar would stay around to 10. And I wouldn't care and I wouldn't, I wouldn't, I would not check my blood sugar, but I would take my insulin and you know, I kind of was just a little different with it. I don't be on it. I still don't want it, but I deal with it. And then one day, I was like, Okay, well, this is not getting me anywhere, I'd better just take care of it. And so you know, my, my definite motto is even with everything that is going on. And even though my pelvic floor socks and my skin is caring, and I have a yeast issue that nobody can freakin figure out and get rid of. Every day gets better. And that literally is my motto, like, everything sucked right now. And it might suck this second. But tomorrow is a new day. And tomorrow, it'll get a little bit better. And I'll look back in 10 years and be like, Wow, look at how far I've come. Because even just like the 13 years of diabetes, it's come so far, the fact that I have an insulin pump on my head, and a continuous glucose monitor that works and works well. is just amazing. And my husband is so early in his diagnosis with his bipolar, he's just like, I don't know, I can't I can't function. I can't do anything. And like, it's so like, both chronic illnesses, right? This is not going to go away, we have to figure out how to deal with it. And I I just take on that motto and he has not yet. So hopefully one day he will. But I just I think it you really do just have to like, be honest with yourself and tell yourself that like, this really sucks. And I don't have answers right now, I don't have a way that is conductive to actually having sex that will work with my husband, but maybe in a couple of years, everything will slow down and hopefully it will be able to have sex and you know, it kind of is what it is and possibly having the new diagnosis of pcls. And which I'll find out today. It's just like, well, I just got from it. Another goddamn thing. Another sorry. I don't mean to say that like that. But like, you know, one more thing, like and we had, we had our anniversary the other day and our dating anniversary, and I had that day gotten back the high testosterone. And I was like, I don't even feel like a woman anymore. Like I can't have sex. I now have more testosterone than I have estrogen in my body. I've already had an IUD, like that was one of the immediate things I did when we got together. I was like we're not having children until if we can even have children. I was like we're not having children until I'm done with nursing school. So we're going and getting an IUD and going off of oral birth control. And the main factor was like I'm allergic to latex and non latex condoms are so expensive when we were trying to have sex. And so I got an IUD and even with the IUD, and my testosterone is like through the roof, and I'm like, oh, when is this ever going to just stop? And I sat there I was all pretty. I was making for the first time for a year and I started bawling at dinner. I mean, just reached over and grabbed my hand and he just sat there and was quiet. And I had my little moment and I wipe my eyes and I was like All right. Let's change the conversation.

Scott Benner 1:09:48
What were some of the things that led you thinking you might have PCs?

Constance West 1:09:52
Oh, I'm in May my I had bilateral upper and lower. Like it feels kind of like an electrical socket is hooked up to my nerves. That just happened literally overnight. It was the, it was the legs one night, and then the following morning it was my arms. And then June 6, I was at work and I was charting and my middle finger became completely immobilized. And then it spread to all of my fingers on my right hand, and then my wrist got contracted in a very weird position of what kind of like it was sitting on a mouse as well. And it got stuck like that. And we went to the end, because it at that point, I had to leave work, but nothing was resolving it. I couldn't move it. I could not move my fingers. I could not move my hand by myself. I could not move my wrist, but I couldn't move my elbow on that right side. And so they they did an extra CT scan, they did an MRI and they were like we can't figure this out. Here's a brace. Here's a sling, go home and follow up with these doctors. So one of them was a neurologist. And now I forget the question.

Scott Benner 1:11:11
I was wondering about, like what you saw about PCs? Like what made you? Oh,

Constance West 1:11:16
yes. So the neurologist was like, literally spent an hour and a half in the room with me a couple weeks ago. And was like I think it could be sleep apnea. He was like, it could be neuropathy. It could be an eye switch. It was not a nice thing got nothing against Ms. But we don't need another autoimmune disease. Because pcls because of the fatigue you always had. And I say sleep apnea. Yeah, you did. Okay, Batman. Okay. All right. Oh, he ran, he ran a bunch of labs, and the testosterone came back high and said, Here you go go to a gynecologist.

Scott Benner 1:12:00
I live one last question for you, then I can let you go. Oh, you're fine. So I am wondering, does How do I how do I wonder this? Your husband? Has he been depressed? Most of the time you knew him? You just have a diagnosis of bipolar now.

Constance West 1:12:25
How husband has been clinically depressed for my god health? 15.

Scott Benner 1:12:34
So do you. Okay, that's fair. So do you? How does that how do you make a decision to be with a depressed person? Is it is it? You love them before? You know? So then? Or is it? Is there any piece of like you feeling like, there's so much wrong with me? That and he's accepting of that I need to be accepting of his thing. Like, what's that dynamic? Like? Does that make sense? Question?

Constance West 1:13:01
So yeah, he, we were together like our freshman year of high school, and then his parents are going through a nasty divorce. His mom moved to Indiana with him and the rest of the kids, right? So they were there for 10 years, and we've been best friends. You know, like, we ended our relationship, fine, you know, whatever, we were 14, um, and we've just been best friends. And we'll talk to each other throughout it. And like, he would always come to me with things that were going wrong with in his relationships. And I'd be like, dude, you gotta like, fix yourself, like, you're kind of the problem. And eventually, his girlfriend's would ditch him. And his, so that went on for 10 years, forever. And then, my parents left for Indiana, 10 years ago, because of my dad's job. And my boyfriend, previous to Kyle just ditch. He just, like stopped responding to any of my text messages. And I couldn't get ahold of them. He's alive. He still friends with my sister's husband. But just completely dropped off the face of the planet for me. And my husband, I was talking to my, my husband now. And I was like, I don't know what I'm gonna do. Like, my parents are literally leaving in a week and like, I have no place to live. And he was like, I'll just come be with you. I was like, Alright, so I'm on an airplane, and we drove home. And we've been together since but like, I knew he had depression. I didn't know the extent of it. Right? Right. Because like if you're talking to somebody over text message, it's completely different than active living day to day, you know, and so the first he came in June, that year, three years ago, and so our our winter here, good stuff. So bad, like, you literally will wake up the sun doesn't rise until like 9am. I feel like probably not right but and then it's gone. You know, like we have a couple of hours of overcast. And so it got really bad and I would come home I was in school, I was finishing up my prereqs for nursing, I was still working full time at that time. So I was working three hour till 312 hour shifts, and I would come home and he was working at Lowe's then and he would just be in bed, and he hadn't moved, if he wasn't working or if he had gone to work, he would come home and and be like, go back to bed. And I was like this is not acceptable. And I was like if you want to stay with me, you need to go get help. Like you need to go to the doctor and either get some sort of pharmaceutical help. And you need to get a therapist and you need to start working through you're like this is not acceptable. This is not how a normal person lives their life. And it's not it's not okay, like I cannot be at school, I cannot be at work worried if you've even gotten up to like, eat today, basically. And I do like all the cooking and all of the cleaning and the making of the food just because I'm so particular with what I eat, and I need to know the amount of insulin I need to take, you know. And so he was like, fine, and then he got on meds. So he's been on meds for three years, but I just have continuously gotten worse and worse. And even with all the medications and medication changes. And he started seeing a psychiatrist who was like, Yeah, I think this might just be your expectations with how you thought your life would be at this point are not how they are. I see this a lot and men your age, try this medication. And it just at that point, it's like I do I love him, I adore him and it's when he is okay and his mood is stable. He's totally fine. It's it's the depressive aspect of like, he gets so deep, so deep. I don't even know how to explain it. But it's just like, and for me with diabetes and the lifelong illness, it's so hard to understand that because I'm like, you just need to get up and go freakin shower, go shower. Like just do a normal thing. And I mean, I am going to be a nurse, I understand the mechanics and the science behind what's going on, but actually living with it. Right? Right. It's so hard. Like I literally it's a hormone thing. It's an imbalance man,

that's what I tell him all the time. Like, what would you do if I didn't take care of my diabetes, especially when things get bad? I'm like, if I didn't take care of my diabetes, and I had to have worst case scenario, something amputated. You wouldn't want to be with me. You don't want to take care of me. Like you wouldn't. You would end up regretting being with me at some point, whether it was a decade or two or three, you know, I'm like you are doing the same thing. You're not taking care of your illness and you're not taking care of yourself and you're not doing justice to our marriage over to me and he that really resonates with him and he's like, Okay, Okay, I get it. I see it. And so

Scott Benner 1:18:27
Huh, does that does that get him to try when he's feeling

Constance West 1:18:32
Yeah, yeah. And I mean it will make him It will make him cry. Like he. I think that's like my big gun is like Hey, dude, like come on. You see how hard it is. And I'm not saying that like you're bipolar isn't hard. But like you need to get out of bed. You I know it's hard to get it to an extent but like, we have a life to live and I'm not going to live my life like this. So you need to so no

Scott Benner 1:19:03
matter what's going on for you or for him, you want to do you want to just whatever the best foot is you want to put it forward.

Constance West 1:19:12
Yeah. And my my husband will say if you were tasked him me at my core, you would just say she just never stops moving. Never. She's just go go go but that's just if I stopped literally again I would totally for 20 hours. I wouldn't move and he he will he'll be like can you just slow down for 10 seconds just slow down. Just Just be here with me and I'm like fine.

Scott Benner 1:19:43
You have done something here today that I appreciate very much. Honestly being this like, clear about all the different issues. Is is really is a lovely thing you've done for Bayliss. I

Constance West 1:19:58
do. I do want to say Lightroom fluorosis is actually I asked the I asked the virginal dermatologist I asked her what population of people with like authorises, do you see, I have diabetes and she told me 90% whether that's type one or type two, she goes, usually it's later in life, it'll pop up, and they will get it. Because again, it's an autoimmune issue if the immune cells are attacking the skin, and it's, it's crazy. And so, if you're going to a dermatologist, women with Type One Diabetes, if you have children, you probably don't have to worry about it. Please have them look at your skin, your vaginal skin, you have a higher rate of having like an sclerosis, because you have type one diabetes, and then lichen sclerosis, if it goes unchecked, and we're talking like 2030 years, if it goes on without being treated, you have a higher chance of getting squamous cell carcinoma and it's so hard to treat. So please just have your dermatologist look at your vagina. Yeah,

Scott Benner 1:21:09
that's it. That's our takeaway. Have your dermatologist look at your vagina. That's definitely Yeah, 100% i think that i think that's,

Constance West 1:21:16
um, get a biopsy, please get a biopsy first. Don't start treatment without a biopsy. that that would be a two.

Scott Benner 1:21:22
All right. So listen, next time anyone calls with one of these ideas? We can't do it this early in the morning. I just as we're talking, I was like, I looked up at the clock. And I'm like, it's not even 9am yet at one point, I'm thinking. But it's important to talk about and I again, I really do appreciate you doing this. I want to wish you luck at your doctor's appointment today. I hope you hear good news.

Constance West 1:21:50
Yeah. I mean, it's pretty definitive that like, I've had ultrasounds before and I do have this better on my own my ovaries at all time. So it is just like how do I how will be treated information.

Scott Benner 1:22:08
All right. Well, I hope you get good answers. And I really appreciate you doing this. If you

Constance West 1:22:13
Well, thank you.

Scott Benner 1:22:14
Thank you for everything that you do. Oh, please. If you thank me, I'm gonna be upset. It's okay. You don't need to thank me or anyone else by the way. You have a pass on on needing to thank people you've got enough going on that you don't even care about me. That's fascinating. Like it really is something. Your parents still in Indiana.

Constance West 1:22:34
Yeah, they're still in Indiana. They're still there. Gotcha.

Scott Benner 1:22:37
Okay, so your your update Yo, by the way. Is your vitamin D

Constance West 1:22:42
low. No, that was checked you vitamin D is fine. Interesting. Of all the things. No, why not? Well, I've been taking vitamin D for since we moved here. Yeah, yeah, I've always taken it. There was just something that they're like, Hey, we tell people when they move here, you take vitamin D. That'd be 12. So it's just something that is part of my vitamins.

Scott Benner 1:23:02
I take it myself. A huge thank you to one of today's sponsors. g Vogue glucagon. Find out more about chivo Kibo pen at G Vogue glucagon.com forward slash juice box. you spell that GVOKEGL Uc ag o n.com. forward slash juice box. also want to thank trialnet for being a sponsor of today's episode, go to trial net.org forward slash juicebox. To get started, don't forget to tell them that the Juicebox Podcast sent you. Thank you so much for listening. I'll be back soon with another episode of the Juicebox Podcast.

#566 Vikki Became a Diabetes Educator

Vikki is also the mom of a type 1.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
You're listening to Episode 566 of the Juicebox Podcast.

The key is a diabetes care education specialist. She's also the mother of a child with Type One Diabetes. Today she comes on the show in an attempt to tell us about moving to that career. I say an attempt because you know, I'm going to think of a bunch of questions and then I mean, who knows what we end up really talking about, but that's not the point. You're gonna love the conversation. So don't be so judgmental. Nothing you hear on the Juicebox Podcast, please remember this please, please, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. You do not have to consult a physician to follow me on tik tok at Juicebox Podcast on Instagram at Juicebox Podcast. The private Facebook group that's called Juicebox Podcast Type One Diabetes you don't have to ask a physician before you take the T one D survey at T one d exchange.org. forward slash juicebox these things are all those are free well things you can just do that. Alright? For this ham fisted, I don't want to tell you it's Sunday night I'm doing a bunch of ads and I'm a little I'm a little woozy. Not gonna lie to you. But don't worry, when I recorded the episode sharp is attack this episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter. Learn more at Contour Next one.com forward slash juicebox you're also sponsored we are also sponsored whose way we are also sponsored today we it's me I do the whole thing I do the booking the scheduling the editing, the social media, and then I say we as if there's some grand group of people here. I guess I can't say I I'm sponsored today. I mean, I could but that sounds terrible, right? That doesn't sound like me. Me Me. The whole thing's about me. Yeah. Oh, how about this, the podcast is also sponsored today. By touched by type one, go to touched by type one.org Ford slash juice box to learn more about them. And to see if they've got tickets to their big dance extravaganza that's coming up, which I bet they do. So go look touched by type one.org. fidget delivery. I'm sure you had. I'm recording By the way, but I'm sure you haven't read this. But there's a book about hitting a baseball. That says something to the effect of if I tell you, if I say Vicki, no matter what you do, the next thing you do should not be imagine a pink elephant with purple dots on it. The your brain immediately conjures a picture of a pink elephant. So that's why they tell you in sports, not the like you don't tell a kid you know, don't strike out. You tell them to hit the ball. That like real little ideas like that, because your brain manifests things anyway. Don't fidget. Don't fidget do not go ahead. Introduce yourself first.

Vikki 3:15
Okay, um, my name is Vikki. I am a certified diabetes educator or a now a Diabetes Care and Education Specialist, my nurse and a parent to three boys including 110 year old boy with Type One Diabetes.

Scott Benner 3:32
So my question I was gonna ask you is do any of those boys play baseball?

Vikki 3:35
They do not. They are not particularly athletic. There's just not ever enjoyed it or excelled at it. And so I have to coerce physical activity out of them.

Scott Benner 3:48
They're not particularly athletic. I gotcha. The reason I said because I'm gonna have to leave in what I said at the beginning. Because if you ever notice with a man on third in a child's baseball game, the coach feels encumbered and they have to walk out to the pitcher and say, Okay, now look, we got a man on third here, just make a good pitch. And inevitably, the next pitches in the dirt bounces behind the catcher and the man on third walks home. It's almost like you're taking time to point out to the pitcher, hey, don't forget the guy on third who you're trying desperately not to let score. And it just it makes it happen. I'm telling you, it's a it's the biggest mistake a youth coach could make. So that's from me to anybody listening who coaches kids playing baseball. Don't remind them there's a man on third make a good pitch, because you might as well just tell them roll the ball up there. Anyway, there's a lot of words you don't know because your kids don't play.

Vikki 4:40
Right? I knew it was labor intensive baseball in particular, that it was several nights a week, so I never really encouraged it. That seemed like a lot of work on my part.

Scott Benner 4:49
Yeah, I've said it here before but we actively made sure my son did not know what soccer was because my wife doesn't like it.

Vikki 4:57
That's smart. Yeah. It's

Scott Benner 4:59
the greatest thing I'll tell it in two seconds is that we were stopped at a red light. And there was a men's league at this park, where hundreds of men were playing on like three or four fields. My son's like, what are they doing? And my wife looks over and looks back, she goes, I have no idea. We just sat there quietly and drove away when the light turned green. That's so funny. If you've ever talked to her, she'll tell you about being drugged to soccer games for her sisters through her whole life. scarred her. She did not write again, she does not like soccer. Anyway. So Vicki, you are on the show, because I asked if somebody can remind me what I said,

Vikki 5:38
if someone had was a CTE, or had recently become one, and so I was certified, it's been a little over a year now I think at the time that it had been just that a year or something like that,

Scott Benner 5:48
yes, thank you. I need other people in my life to remind me of what I mean and what credibly handy, I have to tell you, like, it's way better than having to remember for yourself. So my, my reasoning behind that was that people ask about becoming CDs, a lot of nurses that listen, and people who are looking to educate themselves as an adult. And I thought we could walk through it now. My super secret, like, you know, secret for myself wanting to do it is because I'm trying to make a whole bunch of Juicebox Podcast thinking CDs in the world. And then one day I'll take over the world with with the chip that Bill Gates put in your vaccine. Well, March to victory anyway, that's a different thing. So when did you become a nurse?

Vikki 6:43
So I became a nurse in 2006. It was my second career. I was a teacher first, and then I got married and went to nursing school.

Scott Benner 6:53
Wow. So you were a teacher as a as a younger single person? Yes. What made you switch careers? Can I ask?

Vikki 7:01
Well, I had wanted to be a doctor. And then I discovered beer in college and didn't study as I should have. And teaching didn't require that GPA. So I was a science teacher for four years, and just always knew I wanted to be in medicine. And so when I got married, I had someone that could support me while I went back to school.

Scott Benner 7:27
So now Vicki, I have children who are almost through the education system, as far as at least High School goes, but are you trying to scare the living hell out of all the young parents in the world?

Vikki 7:35
No, we can edit that part out. I just, no, no, we're

Scott Benner 7:39
leaving it in. That's hilarious. Be careful when you're talking.

Vikki 7:46
Now, just high school was so easy in college. I went to Georgia Tech. And so it was very humbling. And my grades suffered because I didn't realize I was going to have to put a whole lot more effort into it. And then I just decided it was way more fun to not put effort into it.

Scott Benner 8:09
So it's not your It wasn't your intellect because you went back around and did it again. Was it maturity?

Vikki 8:14
It may have been Yeah, it was the first thing I was pretty sheltered, I guess. And

away from home and private, more so than I'd ever been. No, it was a public

Scott Benner 8:26
school. Your your high school was, was public.

Vikki 8:29
No, no, that yes, yes. Sorry. Yeah, that was public. I just was kind of a homebody and didn't go out much. College was different. I found my people, you know how you. I feel like sometimes, high school wasn't great. But college I found people I connected with more and have more fun.

Scott Benner 8:47
Gotcha. Would you have been up a more social person in high school? Do you think if you met more people that you jive with? Where do you know, it's funny This is your like, I've listened this podcast enough to know that we're never going to talk about how I became a CT. Don't worry, we will. I'm just fascinated because I've seen a number of people come out of the private high school system with these great grades and they get to college, and they go, Oh, I don't think I'm as smart as I thought I was. But sometimes their grades are bolstered by the private high schools desire for their parents to keep paying for private high school.

Vikki 9:26
Right, right, right.

Scott Benner 9:28
You know what I mean? It wasn't the case. No, it doesn't sound like it because once you went back and did it, you were fine.

Vikki 9:34
Yeah. But you know, oh, no, I probably shouldn't mention the other school. I feel like the other school that I got my my nursing degree from was it was just very different. And honestly, I found those classes way more enjoyable, the atmosphere more enjoyable. Georgia Tech is a it's an engineering school and it's it's just very rigorous.

Scott Benner 9:58
I guess. Gotcha. No I am interested to understand Okay, so you were a teacher. So everybody now when you go back back to school night, just look that person in the face and think I wonder if they're here because they want to be or because

this teacher was formed by myka Loeb

Vikki 10:20
with Miller Lite.

Scott Benner 10:25
Okay, I didn't expect that this much fun. Um, so, okay, so you go back to nursing to and then what kind of nursing Do you do and for how long do you do it?

Vikki 10:35
Okay, so I, my first nursing job was on a step down cardiac floor. And so I dealt with patients with heart failure. Patients a couple of days post heart attack, people that had had angioplasty had a stent placed. So I did that for how many years about five years, and then when my twins, so I have three boys, the oldest is 13, the youngest younger two are 1010 year old twins. And when they were born, it was too much work to go to work, if that makes sense. Like, their dad did the best he could. But I felt like I had to spend four more hours when I got home after a 12 hour shift to clean up the mess he made to be ready for the next day. And so I just stayed home for until they went to preschool. So about two and a half years after that,

Scott Benner 11:33
okay, I'm not this has anything to do with anything. But was your husband really messy? Or are you just type A and you didn't like it not being the way you wanted it?

Vikki 11:42
He what he's my ex husband now. Oh, um, he is very messy. Yes, it. And so now he's in his own house down the street. And he can be as messy as he wants with a maid once a week. And I don't have to deal with that my house stays clean for days. It's amazing.

Scott Benner 12:00
We figure out what's wrong with the house. So okay, so 13 and 210s are the 210s and everybody's a boy. What What age was your child diagnosed that

Vikki 12:15
he was diagnosed while we were on vacation? At five. He had started kindergarten that year.

So yeah, that was what does that make it? It'll be five years in September.

Scott Benner 12:30
Five years in September, so like, it's 21. So they go back to like, like, 1995 9696

Vikki 12:40
Wait, what? What? When he was diagnosed? Yeah.

Scott Benner 12:44
Oh, no. No, I mean, 2016 Yeah, I took that.

Vikki 12:50
What kind of mouth are you doing?

Scott Benner 12:52
They taught me in middle school. My my paid attention to it. Sorry. 2006 2016 is when he was diagnosed. Okay. And when did you become a nurse?

Vikki 13:05
I became a nurse in 2006. So I had been a nurse for 10 years, but I hadn't. I guess I had been back to work a year and a half before he was diagnosed, something like that.

Scott Benner 13:15
Okay. So what was the diagnosis process like in your house? Did you? Were you you were there the entire time? It was on you mostly.

Vikki 13:27
When before he was diagnosed? No. Right after I'm

Scott Benner 13:29
sorry. When he was diagnosed? Was it something that was kind of handled by the whole family or did it fall mostly to you? How did that go? In the beginning it

Vikki 13:36
was. So he had just started kindergarten and he started on a couple of months into it started wetting the bed again. And I thought it was just being in kindergarten schedule was different. We have fall break here in Georgia. And we had gone to visit my aunt moved Destin, Florida. And while we were getting ready to go to the beach, I noticed I got them all some ice water, he drank his and about 20 seconds and then asked for more. And then he had to go to the bathroom. And he asked to go to the bathroom like three more times the next hour. And it was the first time I'd had a chance to really sit down with that information. I was like at the beach with my boys. And he was being super fussy. And usually he's like my most easygoing child. And I just looked at it and I was like, Oh my goodness, that those are the totally the symptoms of type one diabetes, which in my mind, that was like a inherited thing. I guess I didn't know enough specifically, I just knew the signs. But I texted their dad. We were still married at the time and told them that I was like, I'm probably being crazy but called a pediatrician. You've got all these symptoms. Just find out what they say make an appointment, and so he made an appointment for like the next week because in my mind, it wasn't an emergency. But then, as the day goes by, I'm just thinking more about it. He's getting crappier and crappier. And we're staying with my aunt who is a vet. And so I asked her if she could check his urine. And it's the same dipstick they use for cats that for humans, so we went to her office, and she was like I was I was praying It was a UTI. And she said, there's no bacteria, but it's, what is it for plus glucose? And I was like, Well, what else could that be? because surely, it's still not diabetes. But I tried to talk myself out of doing anything about it until the next day, or until we got home. And then finally we're like, no, we're going to the urgent care, or no to the emergency room. And then they had to take us by ambulance to the Children's Hospital. And luckily, my niece was with us, and she could take my other two boys and watch them. So anyway, we went to Pensacola Children's Hospital, I believe. And I had to call their dad and he had to jump in the car and drive there. And it was just a whirlwind of education and

Scott Benner 16:12
insanity.

Vikki 16:13
insanity. Yeah. And we were out of state. So they couldn't make an appointment with an endo. In Georgia. And that was a big struggle, too. Because when I called them when I got back into town on Monday, or whatever, they were like, we can see you in December. And it was like September, when he got diagnosed, and he's five years old.

Scott Benner 16:37
Hey, we thought he had distemper, but it turns out this is diabetes. We're gonna need to see him a little sooner, please. Yeah. He's that fascinating when you're talking to the scheduler? I know they don't know all the time, right? Because it is really what you're doing. You're talking to a scheduling nurse, but they should still know. You're telling them your five year old has type one diabetes, they were diagnosed at a state and they're like, Oh, that's no problem. Can you come in three months from now?

Vikki 17:00
Real? I'm like, no. So we were about to go to the emergency room and just get admitted that way. Because, you know, they put you on, I think he was on like five units of levemir and was going low every single night. And we had no idea what a honeymoon period was, or any of those things. We just know, we were just constantly feeding the insulin that they were on, he has to have 45 grams of carbs per meal. And he has to take these five units of insulin. So I posted on Facebook, and several of my Facebook friends had suggested camp kudzu, which is a camp for children with type one diabetes, and coincidentally, their fall family camping was the next weekend. So we went and we met an endo there who gave us a you know, a number to get in like the next week. So it was awesome. It was meant to be

Scott Benner 17:53
to wander around that camp, just looking for anybody to help you at all. Yeah, so please, we're like come on, written on a piece of cardboard, like recently diagnosed, no one will help.

Vikki 18:03
Please. They, they had you raise your hand like who was the most recently diagnosed? And we of course one because it had been like three days. And so yeah, we got to talk to the doctor. And he gave us a number to call to get scheduled right away, and they fit us in. So that was great. That's fascinating, but it was still always turned.

Scott Benner 18:25
Aside from that. It's just like now in hindsight, right? It's fascinating, but that's what happened. Like, I know, you know, just imagine if somebody said to you now like, Hey, I think you have, I don't know cancer? Can you come back in three months? And we'll check to make sure. We'll just see. Fine. I mean, is your heart in arrhythmia? Try not to run out the steps too fast till we can get you in here. Such an interesting like, response from medical people. Mm hmm. You know, that's really fascinating. Okay, so started off with injections. You said this sounds like there was a bit of a honeymoon period? What were the what were your findings over the first like six months that was it completely overwhelming? Is he alive by luck? Did you start figuring it out? Did your nursing get in the way or help?

Vikki 19:12
I think it did. I found I had no idea how insulin worked. I thought somehow it was magic. And it just knew what it was supposed to do. It would do what it needed to do. And that's something I've learned in my professional experience since is it absolutely is not magic. You know, I heard a doctor say this once that insulin works until it's done. It's not smart. It works until it's done. And so that's what I have said almost every day of my career since is you have to be the smart one. You're the brain behind the operation, and it took several months to kind of get a better understanding of that. They pulled way back and he was off long acting for several months and just did a tiny bit of the rapid acting With me on

Scott Benner 20:02
how much do you weigh when is diagnosed, like

Vikki 20:05
40 something 4444

Scott Benner 20:09
foot weight on after he was diagnosed? You know, I

Vikki 20:12
don't think he had had it very long. I looked at pictures and I think I caught it pretty early. I like to think I did. Because I don't remember him being particularly thin. But he used to be taller than his twin and they are not identical. But he used to be taller than his twin and his twin shot up. And honestly, this may have happened anyway. But his twin has now been bigger ever since.

Scott Benner 20:35
It's possible. We're gonna call this episode diabetes made me short. So have you had his thyroid checked?

Vikki 20:44
But prior to that? We have since Yes. So his dad has both celiac and hypothyroidism. So yeah, they're, I mean, I think they would have been checking for those things anyway. But

Scott Benner 20:56
one day, a long time ago, a young Vicky met a man who gave her a messy house and a kid with diabetes. The reason I asked is because Arden was the smallest person in her school for the girls for a really, really long time. And then she got I guess we should probably like do a whole episode about this at some point. But she got make we thought she was dying. like she'd come home from school and lay her head on the countertop. And she'd fall asleep like facedown on the countertop. And she was just racked. And we eventually like okay, maybe this is her thyroid, and we got a checked in, you know, her labs were, you know, in range, I'm making air quotes. And the, in the, you know, the hospitals like Well, we're she's in range, we don't usually treat this and I was like, Oh, you're just gonna treat it. And so, so they gave her medicine and she stood right back up again. And then she and now today, Arden is 579 she's one of the tallest girls in high school.

Vikki 22:05
Oh, they caught up. Yeah, he's not shorter than me. He's still a good size kid. He is smaller than his brother. Right? Um, his. His dad and I are fairly tall and so

Scott Benner 22:19
either short compared to you guys, maybe. Yeah, that's funny. Arden talks about that. She's like, when I'm with my friends at school. I feel like a giant and as soon as I come home, even though we're not incredibly tall people, we are all taller than her. She's like, I feel short in the house. So but but my point is, is that if you get that test, and you know he's got a TSH of like, 2.1 Don't let Don't let them tell you that's in range. It's common is what that is. Okay. All right. Yeah,

Vikki 22:46
he gets his labs again this summer. We just went to the end of the day, actually. So next set. next appointment is the yearly lab. So I will Yeah, pay more attention to

Scott Benner 22:57
that episode that I did with Dr. Benito about thyroid is, it's absolutely, like, comprehensive. And she will treat anything, like anything over to like so.

Vikki 23:08
Yeah, well, I'm gonna make sure his dad listens to that, because honestly, I have not been invested in how well he manages his own. So

Scott Benner 23:16
well, you know, it's interesting to note that I'm trying to get you guys back together. I'm not doing that. But, you know, when you're unregulated, hypothyroid or hashimotos, you can be a bit of a jackass. And it's hard to not saying your husband was maybe Listen, maybe this is all your fault. I don't know. I'm just saying that. I'm just saying that. It really alters who you are. Okay. And it's not it's not. It's not in any way seen by the person that's happening to like, they don't know they're being jerky. Okay, we're short tempered or unreasonable. I like to tell people privately, I don't think I've ever said it here. But we couldn't get a doctor to give my wife a thyroid medication for seven years. And it really like ravaged her. And she was always in range. But you know, they'd be like, Oh, you're in range. And finally I threatened a doctor and I was just like, Look, just give me I said, is the medicine gonna hurt or if you're wrong, and he said no one I'm like, but then just give it to her. And I said, because I've already dug a hole on our property to put her into so because I'm gonna snap and kill her one day, because she's really unreasonable sometimes. So like, we're all laughing like, you know, like a bunch of married people laughing in a room. And and I'm like, but seriously give it to her. And I would say that within a week, she turned back into the person that I remembered

Vikki 24:35
was really amazing. That quick, yeah, it was

Scott Benner 24:39
very fast. So it's worth it's worth, it's worth looking into. And even if he are being medicated, you might not be being medicated enough. And the difference between just your GP giving you Synthroid and a doctor who really understands thyroid function that can look at those labs and say, we are not medicating the number we are medicating the symptoms until that until you find somebody that will do that you don't know where you're at. So that's my advice about thyroid All right, good luck would not be if you like turned back into like some great guy and you're like, damn it Oh No, I'm just kidding. Don't tell me about your life. I don't care. I don't try to do that. I want to find out how to be a CD. So at what point do you say and it's not a CD anymore I know but you're not going to get me to say the other thing. So we should you say it when it's your turn.

Vikki 25:36
When did I might get it wrong because they changed it like a month after I took the test.

Scott Benner 25:41
Okay, what point did you say to yourself, I'm gonna do this.

I'm going to keep going with what I did in Episode 565, which is read to you from the private Facebook group what people had to say about the advertisers. So today we're going to talk about the Contour Next One blood glucose meter which you can learn more about it Contour Next one.com forward slash juice box. Jess says she loves it because it's inexpensive and it's super accurate. She says I love how cheap the Contour Next One is for being so accurate. She got a couple of them so she keeps one upstairs by the bed downstairs and wonder purse gives her one less thing to think about because she knows she has a Contour Next One nearby. When he says that the second chance test strips or her farm. Her fervor are her favorite part about the Contour Next One. It's fantastic. She said if the first drop isn't enough, you get to do it over again without needing a new strip.

You Angie keeps it and she keeps it simple. She says Contour Next One small, simple to use accurate. Julia says the accuracy is amazing. I have two of them. So if I'm ever concerned that my other gear isn't right, where stuff is disagreeing, I pull out that meter and give it a look. I like what Jonathan says here Contour Next One. I've used it for a long time and it just works. So that's a little bit from some of the listeners here's some from me. Contour Next One comm forward slash juicebox amazing website explains everything you may be eligible for a free meter. There's test trip savings program that you could be eligible for the Contour Next One may be cheaper in cash than you're paying for a different meter through your insurance. I know that's hard to wrap your head around. It's great, it's small, it's easy to use, easy to hold easy to transport bright light for nighttime viewing Second Chance test trips. It's the best damn blood glucose meter I've ever used Contour Next one.com forward slash juice box now let's move over to touched by type one Amanda says my daughter virtually attends a touched by type one dance class. She loves that everyone in the class is just like her and smiles when ever she hears anyone else beeping there's some other stuff here about touched by type one from listeners but I actually have to tell you about their dancing for diabetes extravaganza which is coming up pretty darn soon. Are you can see this yourself if you head over to touch by type one org but go to their programs tab. And you'll see there that the 21st annual dancing for diabetes showcase which features award winning dancers and raises funds to support those touched by type one diabetes is happening on November 13 2021. At 7pm in the Dr. Phillips Center for the Performing Arts. Tickets begin at $15 and are on sale right now. I see a button it says Get your tickets much what happens if I click on? Oh, I can buy tickets. That's perfect. That's exactly how it's supposed to work. Touched by type one.org. Go to the program's tab. Get your tickets. Where's this at? You're asking it's in the Walt Disney theater. The Walt Disney theater. I think it's probably named after Walt Disney. If I'm guessing Oh, look at how nice the theater is. There's a picture here RP Damn. Well Disney theater Orlando, Florida. Hey, if you're local head over and check out dancing for diabetes presented by touch by type one touch by type one.org we don't forget Contour Next one.com forward slash juicebox. links in the show notes links at Juicebox Podcast comm support the sponsors support the show.

Vikki 29:50
I kind of just looked into it. So after I went back to work when my twins went to preschool, I worked in a call center still as a nurse, but no longer at the bedside, like in a hospital, so I was working for a department called population health and our health system created it to help support our Medicare population. So I was making phone calls to them, after a hospital stay to try to make sure they could get their medication, they have transportation, they understood their disease, and weren't going to go back to the hospital as a result of what brought them there in the first place. So I was doing that and just peer in which is like a healthcare term for as needed. I was just filling in when my kids are at preschool, or I had childcare. There was somebody on my team that was diabetes specific, and only focused on diabetes on the Medicare patients on our list who had diabetes, I'm and I kind of would, would talk to that person all the time. And then as I learned more and more after Theo was diagnosed with kidney was I, that person started asking me questions like it was interesting. So that person who had the role prior to me, became pregnant and decided to quit. So that job was open. And so it was announced by my manager to the team that this role was open. She wanted to see if we had any internal candidates. And I reached out and I was like, well, I talked to my then husband and asked him how he felt about me going full time. And he was like, I think that's a great idea. And I emailed my manager, and within like two minutes, she was like, Oh, yes, you'd be my first choice. Can we talk right now. And so she was super excited about it. And then I was super excited about it, it was actually a friend at work that it said you should do this. Because before that, I was like, I don't work full time. I just take care of my boys mostly. So anyways, this friend that really pushed me into doing it. But she told me as part of the role, they wanted me to become a CDE. And so I really lucked out because it is hard. It's a challenge to get that number of hours, you need to be able to test for it. So you not only have to be certified or licensed in a particular discipline, you also have to have the experience so

Scott Benner 32:25
and that's hours at your job like so you need them to put you with diabetes patients over over and over how many hours do you need? I forget the number 1000. Right.

Vikki 32:35
And the majority of it had to be within the last calendar year, I think they may have changed things a little bit due to COVID. But most of it had to be fairly recent. All of it had to be within five years, and most of it I think within the last 12 months. So I was diabetes specifics on it. And all I did, but even you know, 40 hours a week, which you can't really count every hour. You don't count

Scott Benner 33:01
chart where when you?

Vikki 33:04
Yeah. So I didn't keep careful records. I was audited. I have another coworker that tested at the same time. And she did not keep the same records. She was not audited. And then luckily oh my goodness, I was not Luckily, I was audited. So I had to turn in my log time. But

Scott Benner 33:25
you had good specific records in that. Yeah. So that was

Vikki 33:29
the lucky part was that I had been keeping careful records. And with no patient information, but just like I don't know, I made up a number and would say what date and how much time I had spent with each of them. I diabetes specific education.

Scott Benner 33:46
I think I could turn in the podcast, I might be able to get through.

Vikki 33:48
I think you could I think you could if you have they're really particular about the disciplines. They're expanding that a little bit I think maybe like personal trainers can get it now and health coaches and social workers and they've kind of expanded who's able to get it, what disciplines they'll allow. But most people, in my experience have been either a nurse or a dietitian. Yeah, I

Scott Benner 34:11
don't really want to do that I was just being

Vikki 34:14
really there's not a lot of glory in it.

Scott Benner 34:16
I've had a lot of conversations, a lot of people diabetes, I might be able to get to 1000 hours I'm thinking Wait, tell me again, what year that was that that whole decision was made?

Vikki 34:27
So that's a really good question. Um, I think it took me When was that?

Scott Benner 34:37
I'm looking for like the day they were like, Who wants this job? And you're like, I'll do it.

Vikki 34:41
I think it was three years when I took the time the job full time. So I think I decided that in like January of what was three years ago.

Scott Benner 34:51
2018 2018. So your son, your son had had diabetes for a couple of years at that point.

Vikki 34:56
Yeah. A little over a year at that point. Yeah.

Scott Benner 34:58
Excellent. Okay. So So how much of what you were experiencing? Having a child with diabetes? Is? What's my question? How much of it did you see in the actual training? I guess?

Vikki 35:17
Well, that was something that I thought quite a lot about. So most of the training, I think, is geared toward patients with type two diabetes 95% of people diabetes have type two, and then they always err on the side of caution. So it's whatever they can, you can't really make a hard and fast rule that applies to everybody. So a lot of what I've learned, kind of hindered me a little in studying and I kind of had to have two different sides to my brain, like what, you know, the ADA recommends, and what I'm actually going to do with my child, like, cuz they're, they have to be very conservative, because not everyone is paying attention. Even me, like I've been, I have a new job now. And I don't have that same flexibility where I can look at his Dexcom every 10 minutes to see what's going on, I kind of have to trust that, that he and the school nurse are doing what they're supposed to be doing. So I want things there's not as much bumping and nudging lately. So it is it's very different.

Scott Benner 36:25
So there's what works. And there's what you need to know to pass the test,

Vikki 36:29
basically. Yes. And but a lot of the test was, I think, kind of subjective. Like, what would you do in this situation? You have to figure out what is the most important thing for the patient? And there's, you have to put on like a social worker hat for a minute and be like, well, what can they afford? What can they realistic, three, accomplish? Like, what can you like, safely? You know, because not everybody has the same home life, not everybody has the same resources, we are all coming from a different place. So

Scott Benner 36:57
plain English, do you have to assess people's intelligence? Yes. And their ability to understand what you're saying? Yes, very

Vikki 37:05
much, because I think I talked to, to most of the patients in my former Job had type two, but some had type one, and someone had it for a long time. And if they wouldn't have been on my list, had it been well managed. I only got people with a onesies overnight for most of the time I did this. So they were not very well controlled, not tightly controlled. And one of them flat out asked me, How often does your son go to the emergency room for higher low blood sugars. And I was like, well, he's never been since diagnosis, I've never had to take him for that. I mean, he's had to go for a stomach bug now. But when he was diagnosed, I was convinced we were going to be there all the time. My my ex actually moved out, he moved back in just because we thought every one of us was always going to have to be at the doctor with him. Anyway, you know,

Scott Benner 37:57
I met a child, once one at one of my speaking engagements. And the emergency room was a regular part of their monthly diabetes plan. Oh, like they knew they were going to be in the emergency room multiple times a month. And I was I was absolutely fascinated by it. And two parents who were trying really hard and seem to have Yeah,

Vikki 38:19
it's not for lack of effort. Yeah. And I felt Not always.

Scott Benner 38:23
Well, yeah, and there are some people, right, who were just like, I don't care, I'm not gonna take care of myself. Like that's with anything, I would imagine just diabetes. But I'm still fascinated about the idea that it's such a, it's such a bureaucrat, bag, bureaucratic feeling like that idea of like, you know, there's what you need to get through the test. And then there's what you could actually help people with. And these two things do not have to exactly correspond with each other.

Vikki 38:51
Yeah. But but I get it, I mean, it's not going to work for everyone. And not everyone has the time or inclination to manage it that closely. And they don't have two separate tests for type one and type two. So I kind of understand how it's set up the

Scott Benner 39:09
way it is. So then what happens? Do people get to people get through the examination, become an educator, and then either become like a buy the book, this is my job. And this is what I'm supposed to say to you person? Or there are some CDs who take the time to explain the intricacies is it just does that then become personal preference or personnel? I

Vikki 39:33
think so. And you got to do what your employer allows you to do. So.

Scott Benner 39:38
You can't say too much even if you want to in certain situations. Gotcha. So you can be looking at somebody and the answer might be, hey, just Pre-Bolus but the person you work for doesn't let you say that and then you're stuck and you can't say,

Vikki 39:53
Oh, well that one I I would push but the whole concept of bumping and dodging that I've learned from your I don't know there's no way, but most of them are type two. And really I'm like, I Another thing I always say is exercise is magic. It makes such a big difference, particularly with the type twos who are so insensitive to insulin. When you just get up and get a couple 1000 steps a day, everything works the way it's supposed to.

Scott Benner 40:19
You know, it's funny, when you hear people say that, first of all, you're 100,000,000%. Correct. But think of the first thing that you can think of that you can't get people to do generally. It's exercise. And then right, we're like, oh, now you have diabetes. You know what your answer is? I would just exercise visors. You'd be like, yeah, I haven't done it the first 37 years, but that's probably how I'm gonna handle it tomorrow. Thanks a lot. It's like, it's like, it's like saying that the answer to racism is telling people not to be racist. It's a very like, it's you know, you mean like,

Vikki 40:46
it's so simple that it would never work well, and

Scott Benner 40:49
you can't change the nature of people is what I'm saying is like, right? It's it's like, it's like when it's like, it's like, if you were to meet somebody who was grossly overweight, and you said to them, all you really need to do is eat better. Like, thanks. I didn't know that I really thought these Cheetos were good for me. I got you've really strike me up. I appreciate your time. Like, it's one of those weird things that your people do things the way they do them the answer to making it better can't be don't do the thing you do. I know that's, I mean, it's the obvious answer is the right thing to be told. It's an unreasonable thing to expect somebody to just magically pop up and do one day.

Vikki 41:28
Exactly. Yeah, well, I tried to create small goals with them just, you know, add little five minute walks, get up during commercials,

Scott Benner 41:37
you're actually giving them little ideas that might trick them into doing things that are better for them because the truth is, they're not just going to get up and be like, I'm going to walk two miles every day.

Vikki 41:48
Right? We'll just walk to the mailbox today.

Scott Benner 41:51
Well, it is it is like that at some for some people like that

Vikki 41:55
it is unfortunately especially I've worked with Medicare patients and most of them are older and a lot of them had you know, knee problems hip problems. So you work with what you got, I was like even if you're just lifting soup cans, some amount of activity. And then for the type twos, usually they tell you 30 to 50 grams of carbs per meal, you know, lower end if you're female, higher end if you're male and or you know, particularly active so it's different with type ones. We're, you know, doing carb ratios for type twos, you mostly they have a fixed amount of insulin. And we just tried to eat the same amount of carbs basically. So

Scott Benner 42:38
my mom's in her like mid to late 70s and she was very active like going to the gym, right? Right up till COVID and then as soon as COVID hit and she became more sedentary hurry once he started to go up. Oh, yeah, yeah, that activity and so then I just saw I think she was kind of staving off or rising or a one see just by being incredibly active, like she'd get up in the morning, go to the gym, you know what I mean? And then I finally said to her, I was like, Alright, well look, you're gonna end up on medication. You know, if this rolls around again and another quarter when he tests your blood sugar again, I said I would just go low carb if I was you. And she's waiting now to go back in here. But it's she lost weight with a low carb and I think it's gonna work for but it's specific. She lives in a small place. You don't mean like you just said like, lifting soup cans. Like there's part of me that's like, Oh, that's brilliant. And there's part of me that thinks like, trying to put myself in a 75 year old person's mind. And I'm trapped in a small apartment doing curls with some chunky soup. Would you not sit there thinking like, Oh my god, like what has become of my life? My life? Yeah, like yeah, I would just be like, oh, maybe I'm done. You know, like what am I doing? I've already seen the prices right? I'm doing curls with soup cans, it might be time to go. And you know, I just what I'm being serious though, is I'm saying like, it must be difficult to hear things like just walk to the mailbox because they're not. They're still people and they they're not stupid. They're like, Oh my God, that's my life. Like, that's gonna be exercise my knee, you know, and like you said, some people have real problems, hips, knees, stuff like that. Really is it's, I mean, it's obviously the progression of life. And it's not sad. I mean, like, I guess I'd rather have a bum knee at 78 and not make it to 78 but it's just it's the fact of all this. I feel like it gets overlooked sometimes. Like we're also quick. You know, people listen to the podcast or even people who you know online who were very specifically managing, you don't realize like you're, you're the small percentage of people. Like most people are not bumping a 130 blood sugar. You know, most people are like, my blood sugar only went to 190 day I had such a great day. You know, that's how, how it works for most people. Most people don't have glucose sensing technology, you know, they can't afford it. If they had it, they might not know how to use it. And, and the idea there is that you're looking for ways to help those people and then somebody like you or me rolls in and I'm like, hey, my kids Hey, one says five, nine, I really would like it to be five, five. Can you help me the CDs? Probably like what? you doing? Great. Shut up.

Vikki 45:22
Why don't you want to change anything?

Scott Benner 45:24
Leave me alone. You're my easy one.

Vikki 45:27
Yeah, I got told that today, the doctor was like, no, no. I've seen real problems. And I mean, I still feel like our control is nowhere near where I want it to be. But you know, I have three kids, I work full time. I do the best I can. And my kid, he will ignore every single alarm. So if I'm not like sitting in front of the phone, like he could be high for who knows how long and he won't tell me he's low until he's like in the 50s. So anyway,

Scott Benner 45:57
I there are times I've walked into orange room, and I go, you must hear the alarm should go real, and shall go. My phone's not making any noise. And I'm like, don't hear as I hear it from your room into my room. And you know, and so, then you're standing there looking at her, she's looking back, and then her phone beeps and she goes, Oh, it's starting to work now. And I was like, Uh huh. But I don't think she's ignoring it. I don't think she hears. Yeah, I really don't. And I think she's 16. And you know what I mean, like, all that other stuff. But you're right, like, people need help, and help. You know, when, when I say people need help, like, when kids need help, what they really need is a person who is willing to exercise some part of their life out of their life and fill it back in with helping you with your diabetes. Like that has to be part of my job. Once it's part of my job, then I look and I pay attention. Like, you know, Arden grabbed a snack this morning during school. And she like, didn't do a great job with the Bolus. And so I went in, and I was like, hey, that's not working. And she's like, I did everything I was supposed to. And I was like, Well, you didn't, are just waiting to happen. You know, and, and so, but she doesn't see it that way. And she will eventually like, eventually, she'll be through it enough and she'll care enough to see it. But for now, she's a kid and she's like, Look, man, I did I count the cars, and I put the insulin in, and I waited, and this is what happened. And, and now, but now the point is now she's sort of like, so what are you going to do about it? Because she's not 100% sure what to do after that sometimes? Yeah, you know, like the recurrent thing, I think, I think I think left on her own ardens a one c would probably be more like, six, seven. I'd be guessing 6567 on our own. You know what I mean? I'm the other point and a quarter. Basically, that's where you come in. Yeah, I'm like them. I'm like the guard that you know, I don't really score much, but I play a little defense. So anyway. I don't want to I don't know how to ask you this question. Okay, is it a valuable endeavor doing what you do? Or does it feel fruitless?

Vikki 48:11
No, I think it's very valuable. I I feel like I was in the position to help a lot of people have a better understanding of the importance of exercise of how insulin works in their bodies, the importance of nutrition. I mean, it fell on deaf ears a lot there are still people plenty of patients that would just stop answering my calls I think they felt like I was judging them if I if I didn't like their blood sugar's and I tried to be just you know, this is a number it's not a reflection of your character. It just gives me you know, it's a point in time it gives me an idea because I'm not there with you. And I thought it was it's been my favorite job it's been the most rewarding job that I've had and I think I've touched the most number of lives I don't think I've saved everyone but healthfully you know, all those studies they've done about Tiger control gives you you know, five more years of vision and however many more years of good kidney function so I think it did make a big difference and it had the potential for doing even more for a lot more people so

Scott Benner 49:28
I'm certain It was definitely rewarding. I'm certain it has I just wanted you to tell people I to be perfectly honest, if you would have said no, I've wasted my time and I shouldn't have done this I would have thought not expected to say that. I wanted you to tell people because this podcast makes CDs sometimes. So it is not uncommon for me to get a couple of notes a year from people who become CDs because of the podcast.

Vikki 49:51
That's awesome. And yeah, if you're able to and can get those that experience I mean, don't do it to be rich, because that's not gonna happen, but that's not the reason you will you have have the potential to help a lot of people it's and it's, you know, most people that you will touch has type two diabetes, but you know what? They're the ones that are suffering the most.

Scott Benner 50:14
And you could go to, like you could go to a children's hospital that and work in their division just for like type one if you I mean, if you could find a way into that that exists for some people, right where you don't actually talk. They have diabetes educators there of course, yeah. Right. But if you're just going to be one out in the wild, you're going to see people mostly with type two,

Vikki 50:32
yes, right? Yes. Because that's what most are? Yes.

Scott Benner 50:38
If If I said, How many out of 10 CDs? would be? What's my question? How many out of 10 CDs? If I type one diabetes? How many out of a random sampling of CDs would be valuable for me to have? And how many? How many of them? And how do I know the difference? If I'm the Gosh,

Vikki 50:59
well, I asked them really leading questions. So honestly, it depends on what room you're in, I think, but very few. We switch into practices, because nobody wants to try anything. Nobody was open to discussion. And they didn't seem like they wanted to learn they. And this was the doctor. And then the nurse practitioner we saw they just we don't we don't have any experience with that I wanted to try the iPod for my son. We don't have any experience with that. And I'm like, Well, can I find someone to come talk to you about it? No, no, we're not going to do that. And then finally, we went to the pump earlier than I thought we were going to because I just I wasn't satisfied with the control we have with MDI. And so I don't know one or two, it really, um, and all of them will have valuable things to say, but some more helpful than others. Because they are taught by the book, and the book tells us, you know, X, Y and Z, but we know in actuality unless this person has used insulin or cared for someone who uses it has to use inject insulin, they just they don't really understand how it works.

Scott Benner 52:15
Have you ever heard me say if a doctor says no, you ask why?

Vikki 52:20
I haven't. But that makes perfect sense. And it's why I left my last practice.

Scott Benner 52:24
So when people say no, what they're really saying is, I don't want to be involved in that. Or I don't understand it. Or we don't sell that pump here. Or whatever it ends up not sell. But we don't back that pump here. We don't we have no, you know, experience with iport. For example, like who would care it's important to like, inject through. Well, how much experience would you have almost cursed Vicki? How much experience? How much experience would you need with it to figure it out? Like could a YouTube video not do the same thing for me? You know, like, yeah, like, that's really some chicken stuff to say I don't have experience with iport. Exactly.

Vikki 53:01
Yeah. And How hard would it be? Yeah. So it was not the answer I wanted. And I, my ex wanted to give them like, I think we gave him like two more appointments. And I was like, I'm done.

Scott Benner 53:12
What Not only that, but two more appointments to six more months. Exactly. Right. It's not like you can email him a day later and go, Hey, you sure about what you said about the iPod. Give you another chance to change it. I'll tell you, I sometimes send like I can send Arden's ci, CD or or endo an email it says, Hey, I want to try fiasco. Send me a prescription. And they just go what pharmacy? Oh, that's amazing. It's that easy. And so, but I've built a rapport with them. And for those of you listening are like Oh, yeah, well, you're the guy from the podcast. I don't think they know me as the guy from the podcast. No, I don't think so. Like I they're aware of it, but I don't know that. I don't know that they're aware of the scope of it. Like I might just seem like a nice guy with a podcast. Do you know what I mean? And so which is fine I'm not looking for them to think of me any differently. I'm saying that I've proven to them enough times that the things I've said or asked or desired to do have made sense to them and and borne fruit so they're like, Oh, he's usually right about this stuff. Like what do we care? Let him have it. Even when we're dealing with Arden's like thyroid stuff or something. I'll send an email and I'll be like, I think we need to do a blood test for this and they'll be like okay, and that's it like Arden got an iron infusion yesterday that I'm telling you that if I would have waited for doctors, she'd never would have gotten like I got her that iron if you

Vikki 54:38
and for you for advocating that that's really important

Scott Benner 54:40
it and it's a need, you need to do it because it just no one's going to think outside of the box. Like those of you who are like oh my God, my endo is amazing. They have diabetes, and they know everything and they told me about the podcast like that is not most people. Yeah. Yeah. So you have to Everybody can't just change their endo is the other thing you don't mean,

Vikki 55:04
right? Sometimes you only have one choice, just gotta, you gotta go,

Scott Benner 55:09
you got it you at some point, you have to say, look, this is your, you have this job and you're agreeing with me. So this is good. Sometimes you need to, the way I think of it is sometimes you need to look at your doctor and go, that's the nice person with the prescription pad. And they give me the stuff I need. And I do a little smiling and waving while I'm there. And then I go figure things out for myself. So I guess. So there's a lot of value in your being on and I appreciate it very much. And I guess what I'm trying to get across to people is that there are different I hate to just be so blunt about it. But there are different levels of patience. As far as understanding and ability goes. And there are different levels of doctors as far as understanding and ability and desire goes I guess desire fits on both sides. Right? Right. You need to know who you are. And you need to know who you're dealing with. Right? And then you need to adjust and get what you need. That's how I think of it. I don't know how I would think of it if I didn't understand this stuff as well. Or if I would just be in there and feeling lost. And just hoping to God that somebody was going to help me or tell me to do the thing. I needed them to tell me. But right that is not how the world works, whether it's medicine or something else, honestly. So at some point you have to be what's the word I want? I think at some point, you have to be pragmatic about how things really are versus how you wish they were. Right. Okay. Yeah. Does that make sense? Because it does. Okay, so what are some? Can you give me any helpful tips for people listening? Like, how can they deal? Like, with an endo that's not on board, but they can't switch through? Switch?

Vikki 57:00
You just got to keep asking and reframing it. I mean, it always helps to be polite, and you know, come with evidence. And ultimately, I did have the flexibility where I could switch. I did give them several chances. But you just got to keep trying, I guess. My new boss says no, just means not today.

Scott Benner 57:27
Just keep asking. Yeah, basically, I have to admit, I've never once been told no about anything and thought, well, that means that I guess that's over. Always.

Vikki 57:38
And that's the attitude you have to have, especially in this world of diabetes. You can't. Yeah, you have to be very flexible

Scott Benner 57:47
to ever see that terrible movie called Fred Claus with Vince Vaughn. Right? And now for all of you. For everyone listening who's always been like, I thought Scott sounded like somebody and they're like, it's Vince one. I hear that a lot. So you don't you're not the first person to think. But um, so there's this part in the movie where his girlfriend has broken up with him, and she's hanging out a window. And she's like, we're done. He's like, I'm not done. It's the the idea of it always made me giggle. Like the idea of like, I'm not done, I still want to try like, and she's like, I don't want to try. And he's like I do and like, I know it's not a perfect apples to apples. You're talking about personal relationships when women tell you no, it's it's No. But I'm saying when you're when your endo tells you No, it's how can I get around this?

Vikki 58:33
Yeah, how can we reframe it come back to it? Because I mean, because there's no reason why they do want to help patients. And if you can kind of pry a little bit more and find out Oh, they just don't feel like learning

Scott Benner 58:49
where they don't want to be on the hook suddenly exposed. How much of it is that they don't want to be on the hook if something goes wrong.

Vikki 58:56
Oh, well, there's a liability factor as well. That's true,

Scott Benner 58:59
okay. So if you want to switch insulins, or anything like that, because it really doesn't matter, like you could give me every kind of insulin and I could, I could figure out how to use it. Like it's not a big deal like that. That's not a big deal. If you want to change meters, or pumps or stuff like that, there's nothing that your doctor should know or not know that would stop you. Like, if you don't like on the pod and you want to get something else. And your doctor is like no, no, you know, stay with the Omnipod you should be like, No, I don't want to I'm trying to switch or vice versa, or whatever I wouldn't want. I want to try and get an algorithm you don't they don't get just to tell you know, like, I don't know how else to frame it for people. They're not your parents, and you're not alive. You know what I mean? Like you're paying them and you'll want an insulin pump, get an insulin pump. You know, if you want to change insulin, I had people tell me all the time, my doctor said that wasn't a good idea. And I was like you're a one sees eight and a half your doctor doesn't know what a good idea around diabetes or you're a one c wouldn't be eight and a half like if you could try Then you wouldn't be talking to me. I'm a stranger, with no medical degree. Like imagine like how poorly things are going that you have sought me out is sometimes how I feel about it. You know, like, no one should make it to me, but yet, so many. Yeah, great, thanks. Well, thank you. That's your very kind. That was nice. Thank you. Let's just let that soak in for a second. He said, I appreciate that. I just think that it's important for people to know it's it's good to hear that a person like you who's already the parent of a child with Type One Diabetes still works for somebody who has guidelines, and there are certain things you can and can't say, and that you're going to run into doctors who are going to say no to things for reasons that have that are not based in any reality whatsoever. Just we don't do that here. And you know, I always try to joke through it on the show and say that, you know, usually, you know, the insulin your your practice uses has a lot to do with how pretty the salesgirl is for the insulin company you're practicing.

Vikki 1:01:02
I'm finding that Yeah, and that's

Scott Benner 1:01:04
not me trying to be funny. That's, you know, the most, you know the truth. Yeah, yeah. If If fiapf sends in a guy who's like six, four, and has steel blue eyes, and looks like he just lifts things all day long. Your doctor might be like, you know, what really handsome man told me to try fiasco. And here it is, give it a whirl. It's not that far off from how people like it's not. It's not like dirty, it's not um, it's not. It's not unseemly. It's just how people's minds

Vikki 1:01:34
work. And, you know, associate it with

Scott Benner 1:01:38
somebody pleasing to look at wanders in and tries to say to me, Hey, I try this meter, you're like, Alright, well, okay, I'll try it, like, you know, and if somebody you don't jive with says something that's really makes a ton of sense. You might ignore it. You know what I mean? Like he, right? It's just my favorite. My favorite reviews of the shows are from people were like, I hate that guy. But that podcast is so good. Like, I love that, because that means that the contents so good, that they're little, they're literally willing to overlook, they're

Vikki 1:02:08
willing to put up with your person, don't like me, I'm like that.

Scott Benner 1:02:12
But to me, that's a great, that's a great review. That's the content of this podcast is so good. I'm gonna listen to it, even though I don't particularly like the guy. And that's amazing, like, and so but I'm just saying most of the times people don't have the ability to do that if you know,

Vikki 1:02:29
right? That's not typically how things work, right?

Scott Benner 1:02:33
It's just like, you have to be a little realistic about how the world works. So be persistent, knows not no, nose, nose just means not today, that's very funny.

Vikki 1:02:43
Be kind Be patient. If that's your only option, then you just got to keep working it but yelling and screaming, and it's not gonna end well.

Scott Benner 1:02:53
It makes me wonder why, like, Jenny works at a place, right? That's very progressive. I'm sure. I wonder why more doctor's offices don't take that tactic. It's because they can't control the patient who the patients are.

Vikki 1:03:08
Right? I mean, they're not home with them. And they, yeah, they're just trying to be err on the side of caution for everybody. And so that just means that they're a whole lot more conservative. They will over Basal everybody. And anyway,

Scott Benner 1:03:24
so it's mass market. Its mass market. Yes, yes.

Vikki 1:03:27
They weren't good. I don't I don't know where I'm going with that.

Scott Benner 1:03:32
Let me let me see if what I'm thinking is right, then there are so many different kinds of people, and so little time to speak with them and interact with them, that we are just going to give them enough information that they're not going to drop dead today.

Vikki 1:03:47
Yeah, I mean, that's what they're trying to do. What's best for the most amount of people and that's what I tried to have my type twos understand is, this is supposed to work for your average day. But if you're, you know, not feeling well, or it's raining, and you're just sitting on the couch, or if you're running a marathon today, it's not going to, you're not going to get the same result. So your doctor can only treat your average day so that's what they're doing is trying to figure out what's going to be safest for the most amount of people

Scott Benner 1:04:19
knowing full well that that could mean that you might have a Thursday and a Friday where your blood sugar's in the four hundreds you can't get out of bed and you're knocked over and that's just the cost of doing business because I don't feel like we can do a better job and help as many people the same time

Vikki 1:04:34
unfortunately, but if that person I don't know every situation is different. But I mean we do encourage everyone to report those sorts of things. And so then hopefully they are paired with somebody that can talk to them and find more information and find out what led to that and

Scott Benner 1:04:53
you know, you just said that everybody listening is like yeah, I tried that once they call me back seven days later. By the way, you who were told come back in December when your kid was diagnosed or come back in December when you were diagnosed in September like yeah, so is there is there a sentence that gets you out of it? Like is there like again ardens 504 plan right? There's all these like, you know rules from the doctor's office and then at the bottom of it there's one sentence that says that the parents can override the 504 plan whenever they want

Vikki 1:05:31
Yeah, I think it we have with this medical management plan I have to look more closely at it all the nurses have been really helpful and flexible with me and they'll all call me before they do anything they don't like follow it to the letter or anything because every day is different and so honestly if we have the time for conversation we're going to have a conversation and think about because they keep changing when PE is and changing when recesses and what if they danced in music class and like every day is different

Scott Benner 1:06:05
and they're willing to stay flexible with you? Yes, so yeah, so my point is is that that sentence you know, the parents can override anything in this order that gives the nurse the freedom to think outside the block the outside of the box with me right even though I haven't spoken to a school nurse I quite literally since the end of second grade so I'm just using as an example but I'm saying as a as an educator as an endo isn't there a sentence that you could give people permission to think outside of the box instead of trapping them in the idea of I follow the rules that didn't work that's just diabetes I have to sit here and feel crappy.

Vikki 1:06:45
Gosh, there should be and they should have that in the in the office note and then when I read the office note I can go by that but it's not

Scott Benner 1:06:58
so there's there's no simple fix for this then.

Vikki 1:07:02
Oh, no. Okay. No, but and because then that could be used to someone could take it the wrong way and think oh, that means like I have all these patients that would hold their insulin my blood sugar was only 120 this morning, so I just didn't take my basil and anyway,

Scott Benner 1:07:23
so there are people who don't understand that enough and then they get fooled by something and make the wrong decision. Yeah, so

Vikki 1:07:28
yes, it's like you know, stopping your antibiotics when you feel better like they just think oh, well today I don't need it. Like well that's not how it works.

Scott Benner 1:07:36
Why this conversation is so interesting to me is because it mimics government in my mind the idea that you know, it's easy to sit back and look at a figurehead and say Oh, they made the wrong decision again, they made the wrong decision for you. And they might not be trying to make your life perfect or anyone's life perfect. They're just trying to keep everybody alive. And then if that really is what we're talking about here is that Yeah, when you're overseeing so many people there's no way to make them all happy or in our case all healthy or as healthy as they can be. So you're just going for keep the lights on keep the water running keep the heat on let the food show up at the stores some people are going to experience terrible crime some people are going to get sick and die some people are going to fall through the cracks that's the nice way of saying it in government right some people fall through

Vikki 1:08:27
most people

Scott Benner 1:08:28
and most people will be okay so that's why the podcast is valuable for people who want and have more better Yeah, better Yes, because it's a ecosystem where that's what's spoken about I go Okay, this was great. Oh, by the way, how do you become a CD?

Vikki 1:08:53
I saw the documentation Yeah, so

Scott Benner 1:08:55
you you get the hours and then

Vikki 1:08:57
you have an hour's anything then you apply for the test you have to be approved to apply for the test and then you go and take the test and it was oh gosh, how many questions was it? Now I can't remember I think I looked it up but then my computer just went to sleep on me. But it was one of those time tests and was better than I thought it was going to be.

Scott Benner 1:09:25
What's

Vikki 1:09:26
your score like right away even though they they still have to like officially recognize it so that takes a couple of days and then they send us a certificate to you a little bit later but you'll get the score right away?

Scott Benner 1:09:38
Well, is it expensive to take the test?

Vikki 1:09:41
My company paid for it but it was I want to say 175 so not cheap now so it's certainly not something you want to keep retaking.

Scott Benner 1:09:50
Somebody's got to get me a stolen copy that test I want to take it

Vikki 1:09:56
well they have in the study materials are so expensive. Because there's so little few resources, I guess, yeah, like the book, they'll tell you, you have this 500 page book you can study from. And it's like $250. And I didn't buy the

Scott Benner 1:10:11
book. I don't, I wouldn't have read it anyway, I know how to use manual

Vikki 1:10:14
for some from somebody. And then there's some apps you can use. Those are kind of helpful. The APA guidelines are always important. And so they tweak the test every year because the ADA updates their recommendations every year.

Scott Benner 1:10:28
Okay. I just want to take it cold turkey and see how I do on it. Well, if anybody's got one, Senator, that's all I'm saying. All right.

Vikki 1:10:37
Well, I mean, it's all computerized. So if they did, they did some wrong.

Scott Benner 1:10:41
A lot of people listen, if anybody's got that test on me. Okay. And so what? I want to give it a try and see how I do. But No, but seriously, it's this has been enlightening. You've been really honest. Are you okay, with your name being in this? Are you sure? Yeah, I

Vikki 1:10:57
didn't give you my last name, right. I was told just to not mention the current company I work for, and Otherwise, I'll be fine. I, I hope everything I said was,

Scott Benner 1:11:07
it was very honest. And it was your opinion, I appreciate it. And I and I, and here's why I think it's important to say, because people listening need to understand, not that not that doctors aren't on their side, right. And I don't want it to come off that way. Or that your endo doesn't care about you. But that there is a bigger game at play here. And this is overall the best most people can do. And I'll say it right now to your ask for people who do find and those who are willing to tell them more, you know, more secrets and tricks and stuff like that. That means that endo over time has sniffed you out as a person who's not going to screw up, right and hurt yourself. And so they're willing now they're going out on a limb by saying, Hey, listen, Jeff, or think about a Temp Basal right here. You know what I mean? Like, that's them. That's them going out on a limb. And they're not just they can't protect themselves by saying nothing you hear on the Juicebox Podcast should be considered advice, medical, or otherwise, please always consult a physician to your doctor, can you imagine if they are the physician? Yeah. Can you imagine? You go to Dr. Smith, he could sit down and go, Hey, how are you? And you go, good. Dr. Smith, how are you? And he goes, Well, before we get started, I just want to let you know that nothing I say in this room should be considered medical advice. Now Pre-Bolus dammit, you're killing yourself. Like Yeah, like it just, they don't live in the same world. And it's just, it's too much. And you know, you can't, I just I'm trying to figure out how to mass reach people, and give them better, a better chance. And that's why this conversation I think, has been really valuable. And I think it's very valuable for people listening. So they understand that it's not in competence. Sometimes it this is designed, and it's it's not going to change. So you can sit around and hope and beg and yell at people if you want to. But this is not going to change. And it's not just in diabetes, it's in every form of healthcare. Yeah. So everybody just, you know, stop acting like you're 12 years old, and a unicorn is gonna fly in with, you know, balloons for you. It's not gonna happen. You got to take care.

Vikki 1:13:17
Yeah, I think they're doing the best they can with what they have. And most people do ultimately want to help people and improve their outcomes.

Scott Benner 1:13:27
But you got to help yourself to at some point.

Vikki 1:13:29
You really well, you got to make sure that you have a job.

Scott Benner 1:13:33
Well, no, yeah, I'm saying here to practice. Yeah, yeah, exactly. Not you. I mean, the other people, the people coming in, like, you've got to help yourself, like thinking about it as a patient. Like, at some point, if you're not seeing the outcomes, or living the life that you think is possible. It is not because it's not afforded to you and it's afforded to somebody else's, you don't know what to do, and you need to find out what to do. And if your doctors not going to tell you, or if anyone's not going to tell you go to somebody who will share that stuff with you. That's all Do you have you been through the pro tip episodes?

Vikki 1:14:07
And most of them I haven't been able to listen in a while but I know it's the I used to listen to them on walks when I work from home for a year. That's when I walked my dog I would always listen one gotcha. I'm gonna re listen to them and then I want my son to listen. I'm gonna try to anyway I might have to bribe them. But

Scott Benner 1:14:23
you know what? I'm seeing a lot of people doing that now and I gotta be honest with you. It's alright with me. Like I don't see like I see people are paying their kids to listen to the pro tip episodes.

Vikki 1:14:32
What's your currency? What do you want today? anyway?

Scott Benner 1:14:34
Exactly. Yeah. Is it Legos? Is it cash? Let's just talk turkey here.

Vikki 1:14:41
What does it take?

Scott Benner 1:14:42
What what I'll tell you there's gonna be a teenager on I probably won't record till the summer with him. You might not hear this for anyway you. It's gonna be a while, but the mom reaches out to me. I have a long conversation with the kid back when I think he's 16 or 17 I I feel like I straighten everything. He understands what's going on. I just got a text from him yesterday. And he said he finally pulled it all together. And he was texting to say thank you and all this stuff. I said, Do you want to come on the show and tell people about this? And he said, Yes. So you're going to get a real, really good conversation from a kid who is thoughtful and caring and loving and worried and worried about himself, but still just kind of couldn't pull it all together. And you know, and it was hard on him and his parents and everything. And he's gonna talk about what what Finally, you know, made it peak for him and got him over the hump, but that sounds great. Yeah, look forward to that. It's very cool. It really is. And I genuinely appreciate you doing this. taking the time out. Oh, it's been my pleasure. Seriously, you were you had a good time?

Vikki 1:15:47
I did. It was less scary than I thought it was gonna be. Are you nervous? I'm okay, now you're okay.

Scott Benner 1:15:53
Now, how long did it take you? I usually think it's about 15 minutes. Yeah, probably right in there. I can feel people changing around 20 minutes. At least send it up. Just so you know that around that same time, a voice in my head says I'll bleep this out, Vicki. Okay. So I start the episode and I pick through and I get enough information, I think, okay, these are the things I'm going to get through over the next hour. And then I can hear a voice in my head to say this up, make this good. And then I feel an incredible amount of pressure to put together a good show together, off the top of my head, cuz I don't have any notes about you here. I just, I just when we started, I was like, Oh, this is Vicki, she became a CD, she's going to talk to you about how to become a CD. And I was like, that's cool. And then that's how we started. So then I feel this immense pressure not to like waste your time or wasted people's time who are listening or anything like that. I might be more nervous than you are.

Vikki 1:16:45
But you did a great job coming up with questions because I was like, did he send me something initially that I forgot or lost or what?

Scott Benner 1:16:52
Now there's no prep, it's all whatever falls out of my head. That's all well, that's awesome. You have a gift. Well, everyone's gonna walk us wrong. Just Say No. Well, not today. But you hear me like really shucking and jiving and talking fast. I've lost the thread. I'm just trying to be entertaining at that point. Whether I fail or not, I'm not certain.

Well, a huge thanks to Vicki for coming on the show, and sharing everything that she shared with us, which was a lot as you can tell, because you heard it. Thanks also to the Contour Next One blood glucose meter, please head over to Contour Next one.com forward slash juice box. And you can learn more about touched by type one by finding them on Instagram, Facebook, or it touched by type one.org. Remember, if you're in the Orlando area, and you want to see a shindig and extravaganza dance party, right there in front of you on stage, go get some tickets touch by type one.org. Hit the program's tab, you're almost done. If you're enjoying the Juicebox Podcast, please do two things. First thing, tell someone else about the Juicebox Podcast. That's simple. I mean, I mean, it'd be nice if you open up their app and show them how to listen to a podcast to if they need help, because some people don't understand podcasts, but just telling them big deal for me. And I appreciate it. Second thing, go where you're listening and leave a beautiful five star rating and review write a beautiful rating. Like if they say your app allows three stars then get all three stars. If there's five stars, you get all five of them. And then after you do that you say something really thoughtful about the podcast that will help someone else decide to listen. That's pretty much it. The show grows because you tell people about it. Thank you so much for listening. I'll be back very soon with another episode of the Juicebox Podcast.