Scott Benner 10/18/21 Scott Benner 10/18/21

#561 Double Whammy

Devon and her child were diagnosed with type 1 diabetes around the same time.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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

Scott Benner 0:00
Hello friends, and welcome to Episode 561 of the Juicebox Podcast.

Today's guest is Devin Devin has type one diabetes. She also has a child with type one diabetes, and they were both diagnosed around the similar time. That's not English, but I'm going to leave it in around the same time. You know what I mean? Devon's actually a nurse, that Oh, she'll tell you about it for you. What am I going to explain the whole podcast in the first two minutes? It's ridiculous. Just listen to it, you'll have a great time. 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. I'm hoping to personally with this podcast put 2000 new surveys in the pocket of the T one D exchange and you can help you have to be a US citizen who has type one diabetes, or is the caregiver of someone with type one, and then you go to T one day exchange.org forward slash juice box fill out the survey which takes less than 10 minutes is completely HIPAA compliant and a bazillion percent anonymous. You'll help yourself you'll help other people living with type one, you'll help the show

this episode of The Juicebox Podcast is sponsored by touched by type one head there right now to get your tickets for dancing for diabetes. Are you in the Orlando area and would like to see an amazing dancing extravaganza? The extravaganza doesn't dance there's a lot of dancing that makes an extravaganza but I think you understood touched by type one.org had there right now. The event happens at Let me see where I'll tell you why in a second. You know what, I'm just gonna read it to you. The 21st annual dancing for diabetes showcase features award winning dancers raising funds to support those touched by type one diabetes. It happens on November 13 at 7pm in the Dr. Phillips Center for the Performing Arts. Tickets begin at $15 and are on sale now. Head to touched by type one.org to get them go go go What are you doing? I mean not now listen to the podcast first. Oh geez. I almost forgot to say that. 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.

Devin Clark 2:39
I am Devin Clark, and have type one diabetes. I am the mother of a diabetic two year old as well. He was diagnosed when he was 10 months old. Okay.

Scott Benner 2:53
So like I said a second ago before we were you know, recording this. You just sent a very concise, interesting email. And that got you right on the podcast. Good job. Some people's emails are long, and voluminous and volume in this volume vault helped me Devin filemon it voluminous Thank you. I know the word and it just fell in my head. And still very interesting. You're just got right to the point. So why don't we just find out a little bit about your first pick through and we'll see where the conversation leads. Okay, I want to start with how old you are when you were diagnosed.

Devin Clark 3:34
I was 26 years old and I'm currently 28

Scott Benner 3:38
a couple years ago, were you pregnant or not.

Devin Clark 3:42
I was pregnant. I found out on a Friday that I was pregnant. And then two days later, I was very symptomatic of diabetes. drinking a lot being a lot decided to check my blood sugar at home. And it was not reading on my home meter. So I knew what I had to do. had to go to the ER and it was just about 600 when I got there,

Scott Benner 4:13
why did you Why did you have a meter at home?

Devin Clark 4:16
So with my first pregnancy, I had gestational diabetes. And it was just leftover from that.

Scott Benner 4:23
So when you see that number, do you think I have gestational diabetes again?

Devin Clark 4:28
I did. And the ER doctor thought the same thing. So he told me since I already had some medication leftover from my first pregnancy. I was just on pills at that point to go ahead and take those whenever I got up in the morning because I went in at night. And he said get in with an OB like first thing in the morning and so I took some of the medication I was checking my blood sugar about every 30 minutes, it was not going down. So by about 10am, I was well over 300. And just really eager to get in with an OB at this point. The first one I called was close to our house. And I told them what was going on and how much of an emergency it was going to become. If I did not get in within that day. Yeah.

Scott Benner 5:29
Well, tell people I guess why you know more about medical stuff than other people.

Devin Clark 5:35
So I have a background in ICU nursing. Being an ICU nurse for several years, taking care of patients that are in DK a, some newly diagnosed and some not. That's where my certification lies is in critical care nursing.

Scott Benner 5:56
Yeah. So I didn't know we were going to do this. But would you mind Can we go back to your first pregnancy? How old were you then?

Devin Clark 6:02
Sure. I was. See 25 had to think about

Scott Benner 6:13
it. I gotcha. You're not Irish. Are you? That was a quick turnaround on that second one.

Devin Clark 6:17
No, no. No, they're 14 months apart. Gotcha.

Scott Benner 6:20
The 20 the first pregnancy, you've had up until that time, no medical issues with you. You're just cruising along, Mary decide to get pregnant. And how soon until you figure out you have gestational diabetes, and how do you find out?

Devin Clark 6:38
So just you know, routinely with the glucose tolerance test through the doctor's office? failed the first one the one hour, had to go back and do the three hour one and failed that one really bad?

Scott Benner 6:52
How far into the pregnancy? Did they begin to do that?

Devin Clark 6:56
I believe it was around 28 weeks.

Scott Benner 7:00
Sorry for the pause. I was counting on my fingers. around so embarrassed around seven months ish. Yeah, okay. I really was. I was like, oh, it took too long. It's gonna be obvious, I'm gonna have to say something. So until then, I know you would never you had never been pregnant prior to that. Right? Right. So you didn't know what feeling pregnant felt like, but was there a big difference? After they found the glucose tolerance test as a failure and put you on medication? Did you feel differently after that?

Devin Clark 7:37
Not so much. Um, in the beginning, he had put me on too much of the medication. So it had induced hypoglycemia that I felt I was down into the 50s. And so I cut my dose in half and called them and told them what I did, and said, okay,

Scott Benner 7:58
isn't it great? How often you call a doctor and just say, Hey, I did this, they go, okay.

Devin Clark 8:02
I guess that's just the nurse and me, Oh,

Scott Benner 8:06
I see it with other people, too. Like, a doctor made a recommendation for my son recently. And I said, Well, can we try this instead? And the doctor goes, Yeah, sure. I was like, Well, why did you say the first thing is that if if I mean, if you're so easy to move off that idea, like, it feels like it's not a firmly held idea, and I think it takes a while to understand that. Sometimes doctors are just, it's their best guess to, you know, like, here it is. So, seven months, gestational not knowing it. Did that have any, like, what are the impacts on the baby that we're supposed to be concerned with about stuff like that.

Devin Clark 8:42
So with gestational diabetes, most of the time with the, we'll see the need for insulin during pregnancy, it starts to go up around the 28 mar 28 week mark, to a much, much higher level. And so that's why they do it at that point, and not sooner. Because if you will end up with it. It that's where it really shows gotcha. And, and not before, so they don't want to miss it too soon.

Scott Benner 9:21
What is the management for it after it's found? It's just a medication, or is there more to it?

Devin Clark 9:27
So it's different with every pregnancy that I've found. For me, I had to take an oral medication glimepiride some women have to take insulin, but I never had to with my first pregnancy.

Scott Benner 9:44
Gotcha. All right. You know, it's incredibly interesting the way things kind of ebb and flow around here because it has been less than five days and somebody said to me, You never had anybody on who's had gestational diabetes, and I was like, really? And then, you know, you said it was Go well I took care of that. But I would like to have someone on who had to use injections throughout their pregnancy and so if you're hearing this and that's you and you want to be on reach out, but Okay, so you got through that pregnancy fine with the oral You know, it sounds like you cut the dose and then it worked. Okay. It did. Yeah,

Devin Clark 10:17
I had no issues after that point. What happens

Scott Benner 10:18
after you give birth? Do you still need that medication? Or does that need go away? If you're just gestational?

Devin Clark 10:24
So the doctors supposed to tell you to check your blood sugar daily for a certain amount of time? Which I did, and then if I felt weird off, you know, anything like that, I would check it again. And I went back to pre diabetic state. Some women end up developing type two diabetes, with having a history of gestational diabetes you have you're predisposed for developing type two.

Scott Benner 11:01
I wonder I'm gonna you know what I just made a note for myself. I have a list that just says Jenny and I just wrote gestational diabetes on it. So get her on him and pick her brain about that. Okay, so that all goes well. You have a baby baby's healthy. little while later you're like cool, make another baby. And in between those two babies, you You seem okay are looking back. Did you have any indication for type one?

Devin Clark 11:27
No, I was perfectly okay. Like I said, you know, anytime I would feel off I would check my blood sugar first thing and I never got a reading that was over 90. And so the first indication of me having diabetes was feeling symptomatic two days after I had a positive pregnancy test.

Scott Benner 11:54
Hey, so you're proactive then you I guess from your background? You were like okay, well, I've had gestational diabetes. Now I'm more likely to have an issue with insulin, and you've started paying attention to it on your own. Yes. Wow. You're very that's smart and brave, too Don't you think most people would just be like I'm gonna cross my fingers and hope that doesn't happen to me. But you didn't so do you know it? Like do you know what drove you to pay attention and just test once in a while I imagine you like testing a couple hours after pizza and stuff like that. Like you were doing those sorts of things.

Devin Clark 12:32
I can remember one time my husband and I went to go see a movie I had some popcorn and coke maybe and I started feeling kind of dizzy and when I got home I was 81 and that was one of the times where I felt off and just decided to check myself just you know knowing that I am at a higher risk of developing type two at that point.

Scott Benner 12:59
What the does he make you think it didn't make you think you were low right it made you think something else?

Devin Clark 13:05
It made me think that I might have had like possibly a rebound hypoglycemia

Scott Benner 13:12
from like, what do they call it hyper insulin? hyperinsulinemia Yeah, okay. Oh, no kidding. All right, like you're really on top of this. Did you always want to be a nurse?

Devin Clark 13:25
No, at first I wanted to be a doctor and you know whenever I started and pre med at college, I did not like the coursework so I switched to nursing and fell in love with it.

Scott Benner 13:37
Cool. That's really cool. Any autoimmune in your family line? Yours personally than your husband's? No, nothing. celiac? No thyroid, hyper hypo graves.

Devin Clark 13:55
Now no autoimmune thyroid. Just right I did have several family members with just general hypothyroidism but not hashimotos non hashimotos I have hashimotos I ended up Yes, I ended up with it the same time I was

Scott Benner 14:15
diagnosed with type one. Wow, you got a two for one deal?

Devin Clark 14:19
Yes. So I started taking Synthroid and insulin at the same time

Scott Benner 14:23
overwhelming especially being pregnant a bit I would cry Did you cry?

Devin Clark 14:30
I think I did. You know whenever I realized the especially when I realized the medication wasn't working the glimepiride I think I was in tears calling an obese office telling them that I needed insulin and I thought I was developing type one diabetes

Scott Benner 14:46
was gonna say cuz you were diagnosing yourself with that phone call.

Devin Clark 14:50
My endo told me at my first appointment that she thinks I was the only person to self diagnose at home.

Scott Benner 14:58
Wow, no problem. You're up. On top of it since the first kid well so with the with the second baby day two because you're checking good for you by the way you know really interesting had you not done everything you did I wonder how long it would have taken you like if you were just the cross your fingers I'll just gonna hope this doesn't happen to me I wonder how far you would have gotten into that second pregnancy before you recognized it I wonder if it would have made it to seven months or if you would have been in decay sooner and if it wouldn't have hurt the pregnancy to

Devin Clark 15:30
um so I thought about it in depth and talked about it with my endo and we came to the agreement that it probably would have ended my pregnancy being so close to the beginning of pregnancy whenever this happened especially at that point when the baby is forming all the nervous system portion that is it can be very devastating to the development of the fetus such

Scott Benner 16:03
a critical moment Did you write Did you hear Jill at the beginning of the year beginning of 2021 my first episode I did she was diagnosed right as she was pregnant and and didn't wasn't you wasn't like hey I'm checking my blood sugar because I know about all this stuff like she just it just came out of the blue for it's fascinating but okay so you you call the doctor do their job for them and and how does like what's that next step you don't go to the hospital you're right to the end oh

Devin Clark 16:35
so I got in with my ob who was older he had been practicing for a while he had a lot of experience with type ones in pregnancy. Thank goodness so he immediately got me on the gold standard for him which was regular an MPH which I hated.

Scott Benner 16:58
This is two years ago right?

Devin Clark 16:59
Yes. And so I didn't stay on that for very long. Being a nurse you have to it's it's difficult because you have to be on an eating schedule. If you're taking regular an MPH and I told him that I said I can't just you know jog what I'm doing at work and say hey y'all I gotta go eat. So I was

Scott Benner 17:25
having a heart attack but it's time for me to nosh so I have to go somebody impressions over I got a roll up out of here now you're not you're not able to do that. Also Isn't that great? I so thought you were going to tell me this was a guy who'd been through it so many times he really knew what to do blah blah blah and you were like he seen so much and then gave me insulin from 1963 like that was super interesting. So did you say you push the doctor to go to a faster acting insulin?

Devin Clark 17:57
I did. I told him that I would be comfortable with switching at that point. So I believe he had left me on the regular but gave me lantis at that point. But I was able to get in with an indo about a month later. So he wasn't doing my diabetes care for very long. And whenever I got in with an endo, they ordered me a pump immediately.

Scott Benner 18:26
Can we divert for a second here? Can you help people? What am I want to say? Can you help people understand how you advocate for yourself in that situation and how you don't need to be concerned with the doctor's feelings because you really basically are saying to that first doctor Hey, thanks for your help. I don't agree with what you're doing. I'm going to go somewhere else now but how do you say that politely or do you not have to what you're finding

Devin Clark 18:55
it really just depends on you. You know you're paying the doctor to do a job and so if you don't feel like they're doing the job to your specifications or standards and you let them know you can also look up scholarly articles for current evidence based practice about what needs to be used as far as medications or what needs to be done like procedure wise to treat whatever you have going on.

Scott Benner 19:27
It's funny I never until Not that I haven't thought of it. The way you just said it but it just popped into my head it's like you're hiring a contractor to put a floor in your bathroom and you walk in and go whoa. I don't want you to do it like this. And and they say no, this is how we doing you learn we'll get out. Something else though with that. That's really cool. But you did it with a lot of confidence where I think most people don't have the confidence that you're instilled with because of your because of you know your experience. You see so many people just they take it and they put the head down and go on to the doctor said to do. So it's just it's really cool that you did that. So you go over. I'm thinking you had a pump before the pregnancy was over, but I'm gonna ask how did the rest of this go?

Devin Clark 20:12
So I got in with an endo, my plater, who ordered me a pump, and it took about a month for that to come in. So at this point, I'm about let's see, at the end of April, getting my pump and so about two and a half months pregnant. So not too bad. But the pump was like a lifesaver. So, so much,

Scott Benner 20:41
Which one did you end up with?

Devin Clark 20:43
I ended up with the Medtronic 670 G, which I ended up not liking. But you know, whenever I first started, I didn't know that I just ordered it for me right now. And you know, I hadn't researched insulin pumps or anything at that point. So I didn't know to ask for something different. But yeah, I wasn't. I wasn't a fan of it. In the long run, ended up switching after my pregnancy.

Scott Benner 21:15
Did you have a CGM during the pregnancy or just the pump? It was

Devin Clark 21:18
the Guardian CGM that goes with it.

Scott Benner 21:23
That's the 670 g that does all the Yeah, together. Okay. So do you have a Dexcom now or libri?

Devin Clark 21:31
I have a Dexcom g six.

Scott Benner 21:33
And you sound very happy about it. It feels like you just said I bought a Tesla.

Devin Clark 21:38
I was so happy. Like, you know, in online forums, I will advocate for people switching off of the Guardian, because I found that to be highly inaccurate, whereas the Dexcom has been very accurate for me and my son.

Scott Benner 21:55
Devin, here's the part where I usually say this, Hey, sorry, Medtronic, I don't pre screen these people. I don't know what pump she's used before she got here, do a better job. And people won't say stuff like this. Okay. So I mean, no, I think one person, there was this. I wish I can't remember his name. He was so great to talk to, I think we, Jenny and I did an episode about kind of breaking down the 670 G and, and it was from Jenny's perspective, and she just did not enjoy using it. And a listener who has it and really loves it sent me this just like this email is so mad as I was like, it was like we said something bad about his wife. And he was defending her. And I was like, Well don't, you know, say, come on the show and tell me, you know, like, I don't care what pump you use. I was just her opinion, you know? And he loved it. So I was like, great. Come on. Come on, tell people you love it. You know, it's fine with me. But you Okay, so now? I mean, really? it? I didn't want to bury the lead at the beginning because it seems wrong to us. Well, it doesn't seem wrong. Let me be clear, Devin, it is wrong to use your child's diagnosis as a cliffhanger in a story. So that's why you know, I wanted to just say up front, kind of all the facts. So you you, you have type one diabetes. And then oh my god, I forgot. And you were How did you? How'd they catch the hashimotos? They just do a full blood workup on you.

Devin Clark 23:17
Yeah, especially with a family history of it. My mom and both grandmother's have hypothyroidism. So they just wanted to go ahead and make sure and my levels were way

Scott Benner 23:31
off. They image your thyroid. They did they

Devin Clark 23:35
measured my thyroid and also thyroid antibodies, which were very elevated. So that's how I got diagnosed with hashimotos. At that point,

Scott Benner 23:44
do you have any symptoms from hashimotos now or just the Synthroid handle it for you?

Devin Clark 23:51
I'm actually off the Synthroid. I only took it during pregnancy I get lab work done every four months because it is it's imminent that I will have to start taking it again okay um but for now my my levels are fine

Scott Benner 24:04
oh no kidding in range so I don't think of I don't think of hashimotos is in range I think of it is symptomatic or not symptomatic. I'm assuming you feel the same way. Yes, yeah. Okay, so you just don't have anything going on right now. It's tough because it Devin I will say this, it sneaks up on you. So be careful not that it seems like you would definitely know but you know it'll it'll start like with you know, something like you're losing more hair in the shower and you'll you won't think of it as that or you're a little tired or you get kind of snappy with people and you want no you don't I mean, like it just, it sneaks up on you. So be careful. But every four months Geez, you must have like an open vein. Do you just have like a tap?

Devin Clark 24:43
I feel like I need one. I

Scott Benner 24:45
just need like a little a little screwed open up or something like that. Okay, so used to Synthroid through the pregnancy. Stopped afterwards. Yes. Okay. Baby comes out. Yay, baby. And then why How long until your second child is diagnosed with type one?

Devin Clark 25:04
So he was diagnosed during my pregnancy with my daughter. I was diagnosed in March of 2019. And he was diagnosed in July of 2019.

Scott Benner 25:19
Wait hold on a second. I'm either confused or you had a third baby. No we only we have two Okay, so let me start let me make sure I understand So your first child has type one night Your second All right, sorry. Okay, got it. I was like if she got pregnant a third time so that second kid could die. I was like then I don't know how you're have time to be a nurse if that's what nursing sounds art, you know. But okay, so first child, so how old he she I'm sorry he.

Devin Clark 25:49
He is two and a half now. He was 10 months old when he was starting.

Scott Benner 26:04
g vo hypo pan has no visible needle, and it's the first premixed autoinjector of glucagon for very low blood sugar in adults and kids with diabetes ages two and above. Not only is chivo hypo pen simple to administer, but it's simple to learn more about. All you have to do is go to G Vogue glucagon.com forward slash juicebox g Vogue shouldn't be used in patients with insulin Noma or FIA, Chroma, pheochromocytoma, visit je Vogue glucagon.com slash risk.

Don't forget to go to touched by type one.org to find out everything that they're doing over there. And if you're in the Orlando area, and interested in some dancing extravaganza, get yourself some tickets and head over to the show. That's right. It's time for dancing for diabetes. Again, everything you need to know is it touched by type one.org. There are links in the show notes of your podcast player. And at Juicebox podcast.com. To the G vo Kibo pen touched by type one and all of the sponsors, please click the links and support the show.

Devin Clark 27:18
He was 10 months old when he was diagnosed.

Scott Benner 27:20
And how long had you had type one when he was diagnosed? formats. Okay. So for clarity, you're pregnant for four months have had type one diabetes and hashimotos for four months, and then your first child is diagnosed with Type One Diabetes. Right? Then you cry for sure. Yes. By then the pregnancy hormones are on top of you, you would have cried if like I offered you like a tissue had been like you're so kind to me. So I'm so sorry. First of all, that does not seem like a fair collection of circumstances. Very certainly. Is your husband around? Like how do you manage childcare to begin with? And then what happens when he's diagnosed?

Devin Clark 28:03
So he is he's here he helps a lot. But my son was staying with my in laws. Whenever he went into DK, my husband and I were away on an anniversary trip.

Scott Benner 28:20
Happy anniversary. Yeah. Wow. That sucks. How long had you been married?

Devin Clark 28:28
a year. Oh, my

Scott Benner 28:30
goodness, I Devin there. First of all, let's just pause here. And I'll tell a stupid story about myself so that we can stop thinking about you for a second because I'm sure some of you out there. There are times I've been married for a very, very long time. And there are times that my wife and I just look at each other. And we're like, I just didn't realize all this would happen. You know, like I mean, I thought stuff would happen. I thought some stuff would go right? Some stuff would go wrong, we make a little money, we lose a little money, we try to buy a house, maybe we get a better car at some point. We'd fight we wouldn't fight. You know what I mean? Like I thought all that would happen. I didn't think that my wife would get thyroid problem that would go undiagnosed for seven years and really Ravager and then my daughter would be diagnosed with Type One Diabetes. And then my daughter would be diagnosed with hypothyroidism. And then later my son was diagnosed with hashimotos. And I for some reason lived for like a decade with an iron level that was so low and had no like, I didn't think all of that was going to happen. And it's hard. It I mean, when it's all spread out, like you can kind of fight it and then rest and fight it again. It's almost like a boxing match, you know, but you don't usually get in the ring and have a baby in your belly and then two boxers come at you at the same time. Like that's just, I almost curse that's really crazy. And you're young to did that. Do you ever feel like holy crap like maybe 10 years from now I could have had This but like, I'm in my mid 20s.

Devin Clark 30:03
Yeah. But at the same time, you know, I'm just very thankful for my knowledge. Without it, I don't know how I would have done any of this.

Scott Benner 30:14
Yeah, that that is occurring to me that if you didn't have the training and the education that you did, that this really would have probably steamrolled you, I imagine. Yes, yeah. Well, well, yeah. Then Let's be happy for that. Okay. Okay, you're on a bureau. Oh, my God, I keep thinking, like, it's hard to I'm sorry, I'm sidetrack now, because it's hard for me to think of you as four months pregnant when you get the news about your, your, your baby, but what is that? Like? How did you so he's with your parents in laws, their parents, and you're away. And then what happens?

Devin Clark 30:51
So um, I get a phone call from my mother in law, she says, Hey, we're going to take him to urgent care. And I'll call you and let you know what's going on. Because at this point, he's just not acting right? He's lethargic. And he doesn't look good. Like, he looks dehydrated, like his eyes are kind of sunken in, they facetimed with me. And but she said, Oh, he's got like, a little low grade tip. And I said, Well, maybe he's got like an infection or something. So bring him in. The PA, who had previously worked with he, he called me and said, We don't know what's wrong with your son, but we just tried to stick in for an IV and he didn't even flinch. So we're going to send him to the emergency room. And at that point, I got really nervous. And so I sent him to the hospital where I used to work. And I had one of my friends send me a text message said, she said, Hey, I have Jack's, and we're going to take care of him. And so you know, made me feel a lot better. The next phone call I got was from the ER doctor. He said, Do you have your husband by you? I'm going to go over the test results we got since we had some blood drawn. And I said he's standing right here. He said, jack says glucose level was 1432. And I just hit the floor screaming. Like, I knew what it was at that point. Wow. So we had an sent to a different hospital with a pediatric endocrinologist because they didn't feel comfortable handling his care because he was so young. But the the other hospital was close to our house instead of two hours. So why were my in laws were? So you know, worked out?

Scott Benner 33:04
Well. Devin, I've heard a lot of people told me the stories about how they are their children were diagnosed with Type One Diabetes. And this was more jarring to me, because I knew that you understood what was being said to you through the steps. Like I found myself wondering, like, what does it mean when you try to take blood from a baby and it doesn't flinch? Like what would that be an indication of I'm sorry to ask you a because now I feel like I'm asking you a medical question. And you're relating it in your head to your son that makes me feel badly for asking. But from a medical perspective, like what does that say to you as a nurse.

Devin Clark 33:42
It says to me that he is close to being in a comatose state. That's what I thought, that's the body shutting down.

Scott Benner 33:49
That's when I started getting upset when you were telling the story of me, I get the chills, and I felt like it was gonna cry. You did a really good job. You were trying to make me cry. You really did it. But that's all I can think of is that every step along the way. You were going to you were going to know the the underlying inference of the statements. Can I ask that after the shock of the glucose went by? Was it more relieving than some of the other things you were thinking?

Devin Clark 34:17
He also went over the results of his blood gas. That was really, really bad. So he was in severe decay. And I just kept growing as he was telling me the numbers because I knew what they all meant.

Scott Benner 34:31
Well, that part seems unfair to I've used the word unfair twice now. But it does, like there's something about but there's something in there. I think most people will never get to appreciate what the doctor is trying to do for you in that moment, like get you to the care without making you understand what they understand because of the emotional aspect of it. But there's no avoiding it for you. Yeah, they don't tell you the worst stuff in Till the worst stuff is, is you know there and they have a way of kind of like good doctors have a way of gliding you through it a little bit, but you couldn't you couldn't take that ride. So how far were you from where your son was? At that moment?

Devin Clark 35:16
Six and a half hours away?

Scott Benner 35:18
by car? Yeah. Oh my gosh. So you guys pack up and head?

Devin Clark 35:24
Yeah. So we actually went to a baseball game right after that we were actually waiting for an Uber to come to our hotel and pick us up when I got the phone call. And we had friends of my husband meeting us there and so we ended up going to the game, but we ended up driving home right afterwards. And then to the hospital The next morning,

Scott Benner 35:50
Devin this guy you're married to he got a nurse. A good mom and a girl that will go to a baseball game for their anniversary.

Devin Clark 35:59
Oh, the baseball game is it that's all me. I got him into baseball.

Scott Benner 36:05
Does he? Like you get extra gifts that like gift giving occasion?

Devin Clark 36:08
Yeah, I should I'm gonna pass that along to him. I

Scott Benner 36:12
mean, really? He's not paying attention if he's not what I'm What? So did you travel somewhere to see like your favorite baseball team play?

Devin Clark 36:18
I did. So we live in Louisiana. And an Astros fan, the Houston Astros. We went to Dallas to see them play the Rangers

Scott Benner 36:28
Look at you. This is perfect. I would like to, if anything happens to this guy. And you know, and my wife at the same time, I'm going to, I'm going to ring you up. But you're a little young. But I but I would like to go to baseball games. I want somebody who's like, hey, let's go to a baseball game as a celebration. That is very cool. So So timing wise, you couldn't get out of there. So you're like, we're just gonna go to this game anyway? Or was this year like, we might as well stay and do one decent thing before we leave like situation?

Devin Clark 36:58
Well, that was my husband's idea. I wanted to come home immediately. And he said, Well, what are we gonna do like, there's nothing that we can do at this point, other than just sit there in the hospital. Might as well just go to the game that we've already paid for, and go in the morning. So he wanted to stay overnight in Dallas and then drive all the way back and I said, No, we're gonna leave and go home, which home would be about four hours from Dallas, and then another two to my in laws. The next day,

Scott Benner 37:30
husband's never going to live that down. You can be polite on here if you want. But I once had, we were on the way to a flyers game when my wife and I were dating, and she got really kind of like sick to her stomach. And I was like, oh, we're so close to this day. And what I was really thinking was these tickets are really expensive, and I'm not sick. And I know that 25 or six years later, if you were to bring that up right now she'd be like, you were such an idiot for making me go to that game. So I feel bad. I feel badly now as an older person. And one day your husband will tell. But I get his idea. Like I really do like, big What are we going to do? But at the same time I get you want to just go right away?

Devin Clark 38:10
Yeah, I can tell you, you know, as much of a fan as I am. I can't tell you a single thing that happened during that game,

Scott Benner 38:18
I would imagine. Yeah, I would imagine that you're just in a blur, right? Yeah, yeah. Geez. All right, um, son's diagnosed, you already have type one, although you're pregnant, you're just you know, the pump thing. How long till somebody suggests the pump for your son.

Devin Clark 38:36
Um, it was suggested immediately in the hospital by his endo, to go ahead and get an on one. And I was like, Well, let me let me think about it. So we ended up doing MDI for three months before we got him on apart. Okay, I just I wanted to feel comfortable with his management in that way before we moved into something different.

Scott Benner 39:03
So while you're learning about his management, in honesty, you're learning about your own at the same time.

Devin Clark 39:08
Oh, yeah, I'm freshly diagnosed you know, trying to figure out diabetes and pregnancy and that's just a whirlwind and its own and then diabetes and infancy is just another you know, headache on top of it.

Scott Benner 39:25
Well, you're being polite. Those are two sides of a tornado. You know what I mean? Like it's the the infancy thing is tough, because I mean, what could he have weighed?

Devin Clark 39:35
Oh, I think at that point, he was about 15 pounds,

Scott Benner 39:41
so using barely any insulin to get his blood sugar to move. And you're getting ready for an insulin resistance in a couple of months. Right? Yeah. How hard did that hit you? When that time came.

Devin Clark 39:57
Um, it honestly wasn't terrible. I stayed on top of it. I, for the most part, did my own adjustments at that point. Now I still did get with the suggestions that my endo made. If they didn't work out, I'd tweak it a little bit, and let them know.

Scott Benner 40:22
Stay on top of it. That means as your needs increased, you increase the insulin. Right? Yeah, I think that's the, the disconnect for people. So often is they they just get settings and they're like, well, these are the settings and then like, my blood sugar's high all the time, I understand what's wrong. So maybe you need more insulin? Well, no, these are my settings. It's not how it works. But I know that in the beginning, managing I mean, we're half units, like too much for your son.

Devin Clark 40:54
Sometimes we actually had him on a u 25. Insulin homologue, to be exact. So sometimes, we would just end up giving him a half unit of u 25. And that was enough for his bottle, or whatever he was eating.

Scott Benner 41:16
Yeah, I didn't know how to ask if you can. I didn't I find with sound silly or not where you breastfeeding was going to be my question, but I'm assuming your body had done about enough by that.

Devin Clark 41:29
I was not breastfeeding. But I see people online that struggle doing that

Scott Benner 41:36
with with type one. And without but yeah, but with type one specifically. So so you have to how often? Is he getting a bottle?

Devin Clark 41:47
He was getting a bottle every four hours at that point, I believe.

Scott Benner 41:51
Okay, so you how do you do that? Do you inject and start the bottle right away? Or do you get feed the bottle and then put the insulin? How are you handling it?

Devin Clark 42:01
Um, so they had him on, I think in pa h in the background with the diluted homologue. So we had to be on a schedule. And sometimes it didn't work out because you know, the predictability of mph with a rapid acting is kind of easy sometimes. So in general, it was normally sometimes between three and four hours. And then we would oftentimes have to wake up in the middle of the night and give him an extra one.

Scott Benner 42:47
So you were testing? Were you testing him while he was sleeping?

Devin Clark 42:51
Yes. In the beginning, it took us two or three weeks after he was out of the hospital to get him on. A CGM.

Scott Benner 43:02
What did you find was happening overnight. Like what was what was happening that you couldn't see prior to the CGM.

Devin Clark 43:11
He had a hormonal search right after he would go to sleep and it would sustain and then drop off about 4am.

Scott Benner 43:20
What did that do to his blood sugar's?

Devin Clark 43:23
So whenever he got asleep and had the growth hormone surge, it would elevate it a good bit. So he would shoot up to, you know, like, 300 or so. But then since he was also in the honeymoon stage, he'd start working his way back down, and oftentimes find himself flow. Somewhere around four to five ish.

Scott Benner 43:47
I'm incredibly comfortable talking to you, Devin. I'm trying to figure out why. So when you first popped on and you had a more southern drawl, I thought I gave a to let you inside of my head. I was like, I said to myself, talk slower Scott, like, like, just don't like try to dial yourself back a little bit. But you speak more quickly than I expected you to. And at the same time, you have the there's the comforting part of the of the accent. So I've come to realize that the southern accents lo me to like, they make me calm, I guess. But I still have to Anyway, I'm enjoying talking to you. I hope you are too. And you're such You're so good about the knowledge piece of it. Like I I've not asked you a question yet that you were like, Oh, I don't know. But you said you were nervous when we started. Are you nervous now? I'm a little more comfortable. Only a little more. A bit more. I'm doing my best here that would feel better. gone all the great roads. I've made fun of your husband, women love. I can't believe you're a great baseball fan. That's amazing. You're doing a terrific job. like managing your well yourself and your son and you know, through an infant diagnosis is it's just that much more difficult. Really, it's, it's, it's fantastic as as time has passed Now, is there much overlap with your management and your sons? Where are you just like literally two separate people.

Devin Clark 45:28
We are two separate people. But we are also using the same system just for you know, ease of use for myself and my husband. You know, just in case, you know if something bad were to happen. So, we are on the DIY loop.

Scott Benner 45:50
Oh, you're looping, okay? Yes. All right. So you're both looping. So you're using Omni pod or the Medtronic pump to loop?

Devin Clark 45:59
We're both on Omni pod. Got it?

Scott Benner 46:02
So you're looping. And you're both in the same thing. But you have? Well, that's what I'm wondering like you have you have hormones throughout the month. But isn't he growing? Doesn't he too?

Devin Clark 46:13
Yes. So his needs will dramatically go up during a growth spurt. And then they'll kind of taper back off for a little while, and then they'll go back up quickly again, and then it's, you know, just kind of like an

Scott Benner 46:32
ebb and flow. His aren't as predictable as yours. Oh, no. Yeah,

Devin Clark 46:36
my my settings pretty much never change. But his change frequently.

Scott Benner 46:43
That's, that's interesting. Okay, so you're not too much more difficult to manage during different parts of menstruation? You're, you're pretty stable. What does that mean for you? What are your goals?

Devin Clark 46:56
So I've maintained a good time and range. I'm not like, you know, super hardcore, I'm okay. In the 80s. My a one C's been in the fives. consistently. And, you know, I also eat my fair share of junk food. I'm pretty proud of that.

Scott Benner 47:22
You should be what would make you feel hardcore. I mean, that seems pretty hardcore to me. But

Devin Clark 47:29
well, you know, I know a lot of people try to maintain a flat line. And I, you know, I know that's not possible. You know, without a lot of hard work, which I'm not really willing to put in, because I have two people to manage. And I also have, my daughter has katatak hypoglycemia. So I have three blood sugars I have to manage.

Scott Benner 48:01
I'm glad you brought that up, because I want to find out about that in a second. But I just want to tell you, I think what you're doing is really bad ass. And if your blood sugar is not constantly at five, I don't think that's a big deal. I think that's kind of amazing. Are you able to achieve the similar for your son?

Devin Clark 48:17
Um, so his is gonna run a little higher. His endo has already told me you know, two years old is a very hard age to manage. So we just had our first Well, no, our first but first in a while, what I would say hire a one C for him, which was seven. Whereas he's been in the sixes. And I've been okay with that. And so when she told me it was seven, I was like, beating myself up. And she was like, Oh, no, no, this is great.

Scott Benner 48:52
Are you are you would you say, I guess I should say, Would you say I should say which I've made that very confusing. Let me start over. Would you say that stability within a range is your main goal for him? Yes. So you're just trying to avoid bouncing more than anything, right? Is the higher number in your head because does he drop out of nowhere pretty easily?

Devin Clark 49:20
He can. Sometimes he can be a little unpredictable. And just depending on where he is, in his stages of growing, yeah. And then we've also found that sometimes his pancreas is still putting out just a hair of insulin that'll cause him to get really bad. You're getting

Scott Benner 49:41
help so that you don't want anymore, right? Yeah. And I'm assuming to his diet is more commensurate with a younger person's

Devin Clark 49:51
chicken nuggets.

Scott Benner 49:54
entire industry made out of chicken nuggets for little kids. Yeah, and that's tough. I actually was talking talking to somebody the other day with a two year old. And they're like, I don't understand. It's just chicken nuggets. They're the good ones. I was like, Huh, they're frozen. They're not that great. Yeah, I know you think they are, but they aren't like, the only way you're going to get away with chicken nuggets is if you buy ground chicken yourself, or make them out of, you know, chicken breast and like, then you'll get a more stable thing. But the breading on the frozen ones and whatever they put in them so that when they unfreeze, you don't have botulism. Makes it makes it harder, you know, just yeah, I hear you. Well, I mean, that's amazing. Does anyone ever tell you you're doing a great job? Yeah, sometimes good. Because if they don't, I will tell you. You're doing a great job. Thank you. Yeah, you're welcome. It's astonishing. You're still at the age where if you told me, I have type one diabetes, and I mainly go to concerts, and I don't have kids yet? I would that's still your age. You don't I mean, like you're getting a lot accomplished. Do you feel like an old soul? Or? sometimes sometimes, sometimes you feel like, I should have kept that guy away from me?

Devin Clark 51:08
Well, I'm also an only child. So I, I've kind of heard that my whole life.

Scott Benner 51:14
Yeah. Oh, no kidding. It's kind of a little more stoic way of being and, and you're a protector, too. I would imagine. If you love nursing so much. You must really like the caretaking aspect of it. Yeah. Yeah. Cuz that's especially you couldn't not? I mean, I don't know how to be a nurse. If you didn't feel like that. I guess it would just seem like a would feel like a nine to five punch in job than if if that was if that was the case. Okay, so I have to ask, you mentioned your daughter's blood sugar. She has one.

Devin Clark 51:41
She has katatak hypoglycemia. That just

Scott Benner 51:45
sent me to Google. Hold on a second. Okay. All right. A medical term, used in two ways broadly to refer to any circumstance in which low blood glucose is accompanied by ketosis were to in a much more restrictive way to refer to recurrent episodes of hypoglycemia, excuse me, hypoglycemic symptoms with ketosis, and often vomiting in young children. Which one, are you? Number one, number one, good, anything that doesn't involve vomiting is better than anything that doesn't go right. So how does this Well, I guess, how does this show up first?

Devin Clark 52:31
So you know, I'm already hypervigilant, having a second child after having one with type one. So I made it to about a year without checking her blood sugar. Yeah, Amy. And one morning, I go to get her out of her crib. And I've noticed that the crib is soaking wet. And I said, Oh, no. So she's also a little more fussy than normal. So I checked her blood sugar, and it's 50. And I'm like, okay, that's not what I was expecting. So I called the pediatrician, got an appointment. She had had, like, a few episodes of diarrhea about a week prior, and I said it was probably linked to that, but to also keep checking her blood sugar given the family history. So we did, and about a week after that happened, I go to get her out of her crib, and I smell ketones. And I get my blood meter out and it was 3.6. And I call my son's info and I'm like, I need to get my daughter an appointment with y'all.

Scott Benner 53:50
Give a plan or a punch card where I get like a free sandwich at the end of these visits or something like that.

Devin Clark 54:00
So long story short, we couldn't get her an appointment in time. We had to get her to go in patient about two weeks after that. When I woke up, she woke up she was kind of out of it. Her blood sugar was 41. So we brought her to that hospital that evening, and I did fast with her to try and get her blood sugar to go down to take labs, which is when they had diagnosed her with it. At that point,

Scott Benner 54:36
what's the diagnosis mean?

Devin Clark 54:40
So her, this is normally a diagnosis that amount nurse child would get and if you could see my daughter, she is anything but she she's very well fed and plump and So that's why they were kind of scratching their heads. You know why she had this, but she develops ketones in a starvation period. Where you know, her body is so low on glucose, it's trying to get energy somehow. So it starts developing ketones for energy in a state of low glucose.

Scott Benner 55:30
How do you? Is it manageable some way like is there any way to impact it, you have to eat on a different schedule, you have to eat

Devin Clark 55:37
on a schedule, she cannot go any more than three hours during the waking hours, without having at least a snack. And at night, we have to put cornstarch in her milk, which we also had to deal with my son when he was first diagnosed with type one. So so for him it about

Scott Benner 55:59
that for him, you did it to keep his blood sugar up. And for her, you're doing it to keep the milk in her stomach longer. Yes, similar reason, similar thing, but different reasons.

Devin Clark 56:09
And also to keep her blood sugar up because it takes longer for your body to process a starch.

Scott Benner 56:15
And then if, okay, so if your body's still seeing it, and has blood sugar, it won't do the ketose the ketone thing? Right, okay. Forever. Is this a forever thing?

Devin Clark 56:30
It normally goes away. Later in childhood, sometimes it doesn't.

Scott Benner 56:37
But that's a short answer. Yeah, no. I'd have been like, Great, thanks. But you were probably just like, Whatever. I'm doing well, now I can do this now. Yeah, wow. I'm assuming no more kids. No more kids. I'm sure they're delightful and everything, but you get one more thing to do. And you're going to, you're going to be losing your mind, I would imagine. How is it managing all three of these things? Like what? How do you? I mean, you seem unless you're pretending for the podcast, you seem relatively normal and together. So Howard, how did you find a balance? Um, where have you not?

Devin Clark 57:19
I don't know if I have I just kind of get up and do it every day. That's why um, now I you know, mental health very important. I do see a therapist. Yeah. I don't know what I would do if I didn't.

Scott Benner 57:38
I was you I'd shrink it down and just put it on my shoulder. The therapist. Just come along for the ride. Yeah, I don't see how you wouldn't want to do that. I mean, perfectly honest. That's a it's just a lot. It would be a lot if you had diabetes, it would be a lot of your kid did. I think it would be a lot of with this. You know, ketotic hypoglycemia thing too. But all three of them togethers it with a young family is something else. I'm assuming your husband does everything else in the world, right? Like you don't have to, like take out the garbage or move something. You just stare at him? Right? play with the kids and come on. You gotta be kidding me. Now, he can't do there's nothing you shouldn't even know what a garbage day is. Like, if I said you a devil, what day is trash? Come? You should have to go. Um, I think Tuesday. That's that would be the answer I would want from you. Yeah, tell him he's got to get moving here. Yeah, there's, there's a lot going on. Holy crap. So see a therapist weekly.

Devin Clark 58:38
I see your once a month now.

Scott Benner 58:39
Is it just sort of maintenance? How does that go? I mean, do you mind telling me? No, no, it's fine.

Devin Clark 58:45
Yeah, it's it's just, you know, a check in make sure everything is going okay. Um, but I just, you know, find it very important to have somebody to talk it out with and my therapist also is diabetic, so she understands where I'm coming from. And a lot of aspects, was that on purpose? No, it was not. It was definitely a God thing. That we were both diabetic,

Scott Benner 59:20
you're like, so here's the story, you start telling a story about diabetes. Do I know exactly what you're talking about? Yes. Nice. That's a little bonus there. They should put that right on the sign. Honestly. I would I'd be like I have diabetes. Just cater to a diabetes crowd. Because I think it needs a level of understanding that you probably can't have without diabetes. Right? You know, or otherwise, it just sounds like you take insulin, your son takes insulin and your daughter has to drink milk with corn starch in it. Like you don't I mean, like not really understanding the gravity of what's happening and hearing it clinically. I would imagine might not be pack some people the same way. So good. That's amazing. We are coming up on an hour. I want to make sure that we've talked about everything you thought we were going to talk about.

Devin Clark 1:00:11
I believe so. In my mind, I thought we might talk about labor a little bit more, but that's totally fine if we don't.

Scott Benner 1:00:21
Yeah, it's not that we can't. That's why I asked here at the end. So you are using the Do It Yourself loop that you just download from the internet. Which sounds crazy every time I say it out loud, even though I know it's not. I personally think that the algorithm is amazing. And does really great work. Do you use auto Bolus,

Devin Clark 1:00:44
or I I do I use auto Bolus? I had my son on it for a little while. I found it to be a little aggressive for him. So I switched him back to Temp Basal

Scott Benner 1:00:56
gotcha. I think if Kenny was here he would say that you could adjust the percentage that the audible is works at in the programming somehow but to ask me how to do it would be a mistake. But I think it's at 40% Does that sound right? So if it thinks you need a unit it gives you point four it waits five more minutes, I think then it gives you 40% of the next indication. I think that's how it works.

Devin Clark 1:01:24
It does until it finds a level of status or it starts to go down. It'll start it'll keep giving you insulin Yeah, but

Scott Benner 1:01:33
I think there is somewhere in the programming of it where you could just say to look if you think I need a unit give me a unit. I think you can make that 40% 100% not that I'm saying to do it. I'm just saying I think it's possible to adjust them.

Devin Clark 1:01:44
Um, I think that is an open APS not 100% sure, but the the one that I have, I don't have that option.

Scott Benner 1:01:59
Gotcha. So you're not using Ivan's branch you're using a different one? Yes. That's a lot of words that most people didn't understand just now. But it's uh, I mean, I can tell you from my perspective Arden's using Ivan's open APS and it's amazing. It just it really is absolutely spectacular to watch. You make a mistake on a meal. And for it to go, Oh, you're gonna need more insulin and just put it in. It's crazy. Like, you know, you can miss on a meal reasonably. And the auto Bolus, I don't know what your findings are, but I think the auto Bolus will stop Arden from being more like you know 200 at least if we've you know what I mean if we've missed on the amount of insulin she needs it can it can get her stopped usually by 200 Yes, if you just ignore you know, if we were in a situation where we just ignored it and let the auto Bolus kick in Do you have a similar finding?

Devin Clark 1:02:57
I do personally know for my son we had to make a lot of settings adjustments trying to go from Temp Basal to to the audit Bolus with him and we found where we landed was still a little off but in talking with his endo about it we found that we probably weren't going to get to the level we needed to be without using diluted insulin because he was using such small amounts is basil right sometimes your point oh five oh

Scott Benner 1:03:37
my gosh. upsample What's the way now? Present day 33 pounds because he was 10 months old when he was diagnosed he's still only like two right? Yeah. Wow. Yeah, that's that makes total sense. Are you interested in on the pod five trying that for him when it comes out?

Devin Clark 1:03:55
I am very interested in that

Scott Benner 1:03:58
to get rid of the Reilly link alone would be amazing, right? Yes, I agree. I'm it's April now when you and I are recording you know, people will hear this probably will have, you know, Halloween decorations up but I'm like, I'm trying my hardest through all the channels I have, like I'm pushing. I'm like, Can I just like can I see the only about five plays nicely. So I'm excited too. I think that carrying a link between something and the pod is Arden's least favorite part of it. So So yeah, I agree with you. Do you think you would change yourself too, if you found it working?

Devin Clark 1:04:35
Ah, it really just depends on what the hard settings are. That, you know, things that I couldn't change, like, target and such. I know. Whenever I was on Medtronic, they had a certain level I couldn't go below. Yeah, and I know it's the same for tandem and I'm sure shirts. For FDA approval, it's going to be the same for the Lv pod five,

Scott Benner 1:05:04
you would imagine I'm hopeful that you can make your setting so that they do more what you want, as far as outcomes go like that's I don't know, but that's why I'd like to get my hands on it to find out because I'd love to try. Yeah, I'm excited. Um, how long have you been doing it?

Devin Clark 1:05:23
I actually got my son doing it first. I started with him in January of last year, so he was 15 or 16 months old. And then I started in August of last year,

Scott Benner 1:05:45
in about every way I can measure from this conversation, Devin, you are a badass. Seriously, like, Oh my god, are you kidding me? I saw that thing. And I was like, No, I need help make somebody help me. I scared No, no, thank you computer don't want to do it. You sound like you just do whatever's best and jump in. That's very cool. I had a question for you just put that in my head. Oh, do you listen to the podcast at all? How did you find me?

Devin Clark 1:06:12
online on Facebook, actually. And then my son's endo had suggested you to me at some point, I think last year, and I was like, Oh, yeah, I heard about that. So yeah, I started listening. I actually started with when you interviewed Kenny Fox, cuz I was trying to get my loop settings, right?

Scott Benner 1:06:38
Oh, I found so I got you through the loop stuff. Very nice. I like that. And you're and by the way, your endo limits. Just take a second here to say hi, how are you? Thanks so much. Really appreciate it. You're the best endo in the area there. I'm CL willing I am to pimp somebody out if I'm just happy to say Yes, you did a great I don't even know if he's a good endo. Or she I don't know anything about I just happy that they like the show. That's really cool. Like, I mean, being serious that it's, it's very cool that a doctor would say hey, you should try a podcast. And it's interesting that you found the podcast through Facebook, because I I know this shouldn't be surprising, but I'm always like stunned by that a little bit. You know, the the podcast has a Facebook page that's public and you know, basically it just tells you when new stuffs coming out and stuff like that. But then there's a private one where people talk constantly and I think the Facebook page must have gotten a good reputation because now people come into it. Thinking I heard that if you're in this Facebook group, you're a one see goes down and you get better, you know, variability and they get in there and eventually they're just like hey, I'm all this stuff you guys are doing Where did you learn this? And people are like the podcast and they go what podcast and I'm like oh my god that's so crazy. You know you mean like they're there and they don't even understand that the podcast exists or why what how the Facebook page got there it's pretty cool how the I don't know if the snake is eating its own tail now or I don't I don't know what the the euphemism is there. But it's it's pretty, pretty great. Is Do you find that to be a good Facebook group? Yeah, definitely. Yeah, I like I think it's a it's got a good vibe. So I'm always happy about that. Well, I'm glad you found it. And if any of it's helped you It sounds like you didn't need much help you seem like you know what the hell you're doing. So just very cool that you're here. Thank you. Thank you. 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 juicebox you spell that? g VOKEGL Uc ag o n.com. forward slash juicebox. And I don't want to forget to thank Devin for coming on the show and sharing her very unique story. Thank you so much, Devin. And if you love watching dancing, well Well, well, we've got a surprise for you touched by type one is dancing for diabetes. Find out why, where and how. At touched by type one.org.

Are you enjoying the Juicebox Podcast? Please share it with someone else who you think might also enjoy it. Are you really loving it? Like is it hitting you right in the soft, gooey spot in the middle and you're like, Oh my gosh, I love this podcast. I have so many wonderful things to say about it. If you are, leave a five star rating and a beautiful review wherever you listen, like if you listen to a podcast app, go into the app and see if you're allowed to rate the show. And if you are rate rate rate, rate, how many five rate great, great, great, great, great rate and then say something really meaningful about the show that might help a new listener to want to listen. Thank you so much for listening, the show is doing terrific. It is because of you it is because of your sharing. I really couldn't say thank you enough or, or even find the words I think to express how grateful I am. Thank you so much for being here. I'll be back very soon with another episode. Oh, I'm sorry, I meant to also say T one d exchange.org. forward slash juicebox. us resident with type one us resident who is the caregiver of someone with type one, take the survey, you can do it on your sofa from your phone, it takes less than 10 minutes. I'm being serious. They're not difficult questions. They're not probing or deep or super personal. You're going to be helping people living with Type One Diabetes, when you complete the survey, you're going to be helping the show. If you can do that. I would really appreciate it. I'm trying to personally with the power of this podcast, push 2000 new surveys to the T one D exchange before the end of November before the end of diabetes Awareness Month. If you could just give me 10 minutes on this. It would mean a lot

#559 LVH T1D Camping

L.V.H. is a new type 1 who loves camping.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to Episode 559 of the Juicebox Podcast. I'm glad you're here.

Today we're going to be talking with a type one who's in her mid 20s. Who loves to camp. Also, there's a lot of great stories in here. So it's about camping. ish. I mean, you guys know the podcast this point, if you think this is an hour about camping, you've got the wrong show. But there's some camping stories and some ideas about camping. It's not a how to about camping with diabetes. I honestly don't know how to make an hour long entertaining podcasts about a how to about anything, so I found you some lvh and she loves to camp, and she's got a tight bond, and she's gonna tell you about how she was diagnosed, and how she went camping. It's gonna be terrific. Don't make me explain it to you here. While you're listening though, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. Just a reminder, go take that survey, p one d exchange.org. forward slash juice box trying to get to 2000 surveys before the end of diabetes Awareness Month.

This show is sponsored today by the glucagon that my daughter carries. g vo hypo pan. Find out more at G Vogue glucagon.com forward slash Juicebox. Podcast is also sponsored today by trial net trial that offers free type one diabetes, Risk Screening and much more. Go find out about it at trial net.org forward slash juicebox when the web page asks you how you found out about trial net, make sure you say Juicebox Podcast.

L.V.H. 2:05
I'm lvh. I've been type one diabetic since June of 2019. And I am poor 26 years. Nope, I'm not 26 I'm 27 years old.

Scott Benner 2:18
I don't care how old you are. You have a mom, you have a moniker. How does that happen? Don't tell me your name. I mean, I know it's your initials. But like how does that come to pass? Like how does somebody decide? They're gonna call you by your initials.

L.V.H. 2:35
I probably because I'm a twin. So it just became lvh and avh. Just to make things easier. Oh, that's cool. And I played sports my entire life. So it was a quick nickname to do on the field.

Scott Benner 2:47
Nice. I love that. I just saw that. No one's ever like looked at me and been like, SB right? Because I would think I would find that cool. So this has been your whole life.

L.V.H. 2:59
Pretty much. Yeah, so I've had a couple of nicknames. Another nickname would be bond, even though that's has nothing to do with my last name. But they thought someone on my lacrosse team thought that the first part of my last name was bond. So they started calling me bond. And then I was like, you know, it's bad.

Scott Benner 3:18
just stuck. Yeah. Well, in the real world, lvh stands for left ventricular hypertrophy. Which is Yeah,

L.V.H. 3:31
there we go. But

Scott Benner 3:32
not nearly as fun as as it being anyway. I love that. So are you lvh?

L.V.H. 3:38
Yeah, you can call me I'll be. I'm gonna see if

Scott Benner 3:40
I can work that out. I'm gonna do my best here. I've never called anybody by a moniker before. I'm excited. You're 27? Did you just turn 27?

L.V.H. 3:50
And July of 2020 Oh, so no, no, no, I'm on was 28 I just put a life mate can't remember how old I am ever.

Scott Benner 4:00
I never can as well. And that's why I was. I just thought other people have a grasp on their age. But you clearly you clearly don't either, which now makes me feel better. It's like, Oh, that was Yeah, she's, she forgot that she was an age that she turned eight months ago. I've had it go both ways. For me. I've mentioned it before on the podcast. I lived an entire year thinking I was a year older than I was, which was an amazing surprise on my birthday. Because I technically, on my mind, that's funny. Yeah, but then I made up for it later by believing that I was younger than I should. I don't know how that happened twice to me in one lifetime. But my wife my wife said to me at one point she goes for the last couple of months I've been hearing you say how old you are and you're wrong. And I haven't said anything wondering what would happen. Like, is that how bored you are like these are the psychological mind games that are being played. Anyway. Tell me about it. How old were you when you were diagnosed?

L.V.H. 5:03
I was 25. And I was less than a month away from turning 26. So that when I do remember,

Scott Benner 5:10
oh, this hasn't been long, okay, okay.

L.V.H. 5:13
Yeah. So I've only had Type One Diabetes for a year and a half, plus some. Okay, this June will be two years.

Scott Benner 5:22
So you made it all through high school. Sounds like you played sports. Did you play sports in college?

L.V.H. 5:27
I did. I played lacrosse in college. Okay, so you

Scott Benner 5:30
did that all good. You're off in your life. things feel Yeah, you're going you probably by 25. Year like, I'm gonna be alright.

L.V.H. 5:38
Yeah, I had already lived in two cities. Like, besides the city I grew up in. I had just moved to a new city, I guess. And lived there for a year. And then called my parents in the hospital and was like, guess what? I have type one diabetes.

Scott Benner 5:57
lvh one day. Yeah. SOS ASAP. Yeah. Did they come to help you?

L.V.H. 6:08
They did, my dad flew out. I tried to convince him not to because I was like, Oh, I'm going to leave here in a day. And then fly to Kansas City for a beer festival was my grand idea thinking at the time, and I convinced all the nurses and doctors. I have to be on next flight on Thursday. Is it possible? And I never told them where or why I was going out of town. And they were like, Yeah, sure. Until they discharged me and they're like, where are you going back home to Kansas City. And I was like, No, I don't live in Kansas City.

Scott Benner 6:43
Here is I just have to go. Yeah,

L.V.H. 6:45
my dad was like, she's going nowhere. As of right now. I was like, oh, man,

Scott Benner 6:50
I I agree with your father. I would have been there before you hung up the phone. So yeah, well, isn't it interesting to no matter what the illness is? Whether it's a short term thing or a lifelong thing? When you first get the news of it, you're like, no, this won't touch me the way it touches other people. Like I won't be impacted by this. Even if you got the flu. And you had plans in three days. You hear people do that all the time. Like I'm going on vacation next week. The flu is not going to stop me. Oh, sure. It will.

L.V.H. 7:20
Yeah, I think it probably didn't help that my co worker at a time had type one diabetes, and she was I think 12 or 13. And when I called her being like, hey, my a one C is 13.5. And I'm going to the hospital right now Can I still go to Kansas City? She was like Yeah, sure. Definitely then that helped the situation in terms of like, egging me on to like still take this trip to Kansas City. Yeah, well, that happened

Scott Benner 7:48
well her perspective right like if if her knowledge was in your body you probably could have gone to Kansas City. But yeah, brand new diagnosed person's not gonna know did you ever make it like the following year? Did you go to the festival? Where was that co

L.V.H. 8:02
because the following are my friend who was going to visit and Kansas City for that festival she moved like that October back to the Midwest. I don't even know if Kansas City is considered the Midwest. No, probably not. I

Scott Benner 8:20
don't think so. But is it Kansas City Missouri or Kansas City isn't there in Kansas City Missouri and Kansas City in Kansas?

L.V.H. 8:29
So it's the it's like the same city it just is right on the border

Scott Benner 8:35
Really? Yeah, I've been there and like oh yeah, I remember this oh my god I just pull up a map and I'm like oh my god yeah, I remember

L.V.H. 8:46
on the border like the street that was the border so she was Missouri but the hospital across the street was Kansas City Kansas.

Scott Benner 8:54
Okay, I remember being that this this whole like, Am I wrong about this? I also remember being in Ohio and feeling incredibly close to Kentucky which seemed odd to a person

L.V.H. 9:08
now you are lucky and depending on what part of Ohio you were in Yeah,

Scott Benner 9:14
I don't understand all this. I would like more specific delineations between states

L.V.H. 9:21
or not Cleveland Cincinnati, it would be the closest big city to Kentucky because it's the there's like three big cities. It's the one that's Southern ish. Okay, and Ohio.

Scott Benner 9:33
Alright, so so what was our original question? are we calling that part of the country the Midwest?

L.V.H. 9:38
The Kansas City are we calling Kansas City part of the Midwest?

Scott Benner 9:43
No, I guess you can't it looks like it looks like the Mideast which is Yeah, I hear people say and then what's what's what's like the between Denver and K in like Wichita is that like the mid I don't think there's

L.V.H. 9:57
a central I don't know. All right,

Scott Benner 10:00
I'll tell you what you tell me about your diagnosis, I'm going to find out what delineates the Midwest. So how did you end up in the hospital?

L.V.H. 10:12
So I had like all the symptoms of diabetes, pretty much the tire school year, early some Christmas break until end of the school year and beginning of June cheer a teacher. Yeah, I'm a teacher. And at the time, I was completing my, like student teaching. And my friend who is doing it with this student teaching at the same school as me, jokes several times, like, you know, maybe you're, maybe you're diabetic, and we sort of just joked it off. And finally, because I lost so much weight, and was constantly thirsty, and all those other symptoms, I just scheduled a normal doctor's appointment. And I was like this run any blood tests you want to run. These are like my symptoms. And then I left that doctor's appointment, oddly enough, went to the Apple Store, because my phone was not working. So I could only speak to people on speaker, and they call them they're like, can you talk and I was like, Well, I'm talking to you through my watch right now my phone is being fixed. So they're like, great, we're gonna call back and leave a voicemail. And all they said to me was like, what my Awan fee was and if you have these symptoms can go to the hospital. I was like, I have no idea what and I want to see is I do have those symptoms. Say Google, you know, what you're not supposed to do is Google Health stuff. googled a Wednesday and the only thing I could come up with was type one diabetes related stuff. So I called my friend being like, What do I do? Should I go or should I not go? I don't have great insurance. Will it cost me a fortune? And she's like, No, you have to go. So I went and picked up another friend. My friend Rick diabetes was like, on your way to the hospital stop and get a Diet Coke or not a normal coke. And drink it. That way you get admitted right away. And you don't have to sit in the ER waiting room. And I was like, Okay, and now when you look back on it, everyone's like, why did you drink that coke on your way over to the hospital when you knew your blood sugar was already super high? Probably super high. But I had also been like running around and biking around all day. So maybe it was low and all I know is when I got to the hospital. My blood sugar's 600 something. I don't remember the exact number.

Scott Benner 12:56
Did you have to wait?

L.V.H. 12:58
Now I was like, they took like blood pressure and then like sent me back into the ER and gave me a bed to sit in for a while until they took me out to the ICU.

Scott Benner 13:10
Your friend sorta had some good that was I mean, that's not a health wise a good tip, but it was a decent tip for not waiting around.

L.V.H. 13:18
Yeah, I guess so. Her older sister is a diabetic too. And that's when she was being diagnosed. My friend. The older sisters under chronologist told the family to do that.

Scott Benner 13:33
That's insane. By the way, yeah. Not as insane as this. The Midwest is defined by the federal government as this here are the states ready? It's gonna freak you out. Illinois, Indiana, Iowa, Kansas, Michigan, Minnesota, Missouri, Nebraska, North Dakota, Ohio, South Dakota and Wisconsin are all considered to be in the Midwest. I mean, that's 1-234-567-8910 1112 13 states that's all the states.

L.V.H. 14:02
Wow. Yeah. All central part of the country. It's

Scott Benner 14:06
a big chunk of them. And it's also northy like for some reason mid makes me think middle. But then Texas takes up such a big chunk of the lower portion of the mid part of the country. That there Yeah, very north to begin with, I guess. I guess they

L.V.H. 14:22
include Texas in the Midwest. No, no, I guess I guess. I guess. I live there. That's not the Midwest.

Scott Benner 14:29
I guess the Midwest doesn't promise. height as far as the map goes. Yeah, I guess it's Central. I'm thinking of it doesn't matter. But what matters is Yes, you were in the Midwest.

L.V.H. 14:44
Okay, there we go. I can't believe you

Scott Benner 14:47
haven't gotten to go to a beer festival yet.

L.V.H. 14:50
So I've been to that beer at that same Beer Festival. I had gone the year before or prior Yeah. So and there's They've been out in Denver, there's tons of beer fest. Well, pre COVID, there was tons of beer festivals three going to.

Scott Benner 15:06
So how do you leave the hospital? Is it? Like? Do you feel like you understand what's going on? And you have a bunch of technology? Or is it a little scattered? Did they just give you some needles? How does it go?

L.V.H. 15:19
It was a little scattered, I would say, I left with a box of needles, and a vial of insulin. And this piece of paper that said, like, here's how you're going to give yourself insulin at mealtime based on your blood sugar reading. And I think, at minimum, I was always given. Like, if I was between, I would say 80. And 120, probably, it was like, you're gonna give yourself three units of insulin. And anything after that, it sort of like, jumped up by one unit. And I was in between moving apartments to so I like did not have food at my house or my apartment that I was moving to. So my dad and I ate out almost every meal, like for that first couple of weeks. And I just would walk around town with these like, orange oranges and like, pull them out at the, like, middle of the restaurant and be like, let me just give myself some insulin right now. I felt like, so weird. And then, my friend was trying to they didn't like the hospital I was at, they were like, Oh, you can see our endocrinologist team. And like three months, I was like, that seems ridiculous. So then I started calling around different places, they suggested another one. And I, honestly, I'm so thankful I ended up where I ended up with the endocrinologist because I got put on the Dexcom. Like, immediately, because my endocrinologist is like, oh, you're going to be living alone. You You need some sort of glucose monitor. That's not the fingerprinting system. And he's like, I'm going to suggest a Dexcom because that will send the alarms to your parents if they need to wake you up. Or like a friend nearby if they need a call and wake you up.

Scott Benner 17:33
up to 10 followers.

L.V.H. 17:35
Yeah, I only have two. Well, when we go get into like the camping part, when I do go camping, my friends hook up to it. But when we're just in Denver, I'm not having them follow my blood sugar on a daily basis. Right.

Scott Benner 17:51
So yeah, that is how you ended up on the show. Right? Is that you? You do a fair amount of camping? Yeah. Okay. And that came up came up online. And a lot of people were interested in it. I have to admit it's a it's a space that misses me in that I don't think I've been camping since I was like a little kid. And my parents were, you know, bought a trailer and decided that's how we were going to spend weekends sometimes. I don't have particularly bad or good memories of it. I actually don't know that I have any memories of it. But I don't camp. So when people start asking questions about it. I always get confused about why anyone's even nervous to go camping. Like To me, it seems like going to a hotel, but being outside. Right? Yeah,

L.V.H. 18:37
I would. I would agree with that. It's fairly easy to ease people's mind. It's fairly easy to camp with Type One Diabetes. Okay, excellent. So like, management and everything stays the same. For the most part,

Scott Benner 18:53
you just have to have supplies with you and have a way to keep the things that need to be cool. Cool. And I would imagine Yeah, pretty much it right. Yeah. All right. So what what draws you to camping? Have you always been a camper?

L.V.H. 19:06
Um, I guess no, just given where I grew up? Not really, I mean, we did what is like, I don't even know if they still have it. It was called Indian princesses as and that name is so politically incorrect at this point. But when I was younger, it wasn't. And we would go camping with that group, but it was like, you go and you stay in a cabin. You're not like pitching a tent anywhere. I went camping at a country music festival once in college. But then when I I've always just enjoyed the outdoors and loved being outdoors that I knew it was one time moved up to Denver. I knew it was something I wanted to start doing sort of right away. Once I got here and I fell into the right group of friends that also wanted to be doing campaign and living outside in the wilderness for a week. So it just sort of fell into place. Cool.

Scott Benner 20:12
I have to tell you that the YMCA in certain parts of the country still calls their program Indian princesses.

L.V.H. 20:18
Okay, there we go.

Scott Benner 20:23
There's their slogan is for

L.V.H. 20:24
the I shouldn't talk bad about the name.

Scott Benner 20:28
It's a program. programs are for dads who want to quality plan one on one time with their daughters.

L.V.H. 20:35
Yeah, yep. Our dad went with us. No, dad, my dad.

Scott Benner 20:40
Our dad. Whose do you have? Do you have sisters? I have a twin sister. So yeah, so yeah, so you and Avi is avh. Right. ABH? Yeah. Remember, you guys went together? Yes. When your father called you, did he say a and lvh? Or did he say six of the letters all together?

L.V.H. 21:03
No, he said our names. Our parents always called us by our first name. It's more just like friends that caught us. I'll be HIV. Ah,

Scott Benner 21:11
I say because I was watching cricket. I just feel like that would get confusing. So you do some camping with your dad when you were younger, and then not really again. And now as an adult. You get into the Denver area and this is something that seems like you want to get involved in and are you pretty heavily involved at this point.

L.V.H. 21:31
At this point, yeah. I do a couple of camping trips a year. Our biggest camping trip is always around the Fourth of July 3 of July. Just that week was I have a birthday of my best friend out here has a birthday so we just do a big week long camping trip and then we have we both teach and we do a camping trip over our fall break down to the great Sand Dunes National Park and then I'll drive to Utah camp. A lot of it is has been local to Colorado but we're in the midst of planning a lot of bigger trips this summer now that COVID is sort of dying down a little bit and there's not an we're vaccinated so we feel more comfortable this summer camping then we did last summer we last time I was a down sort of year we only did one or two trips right?

Scott Benner 22:41
Howdy this great Dunes National Park thing is beautiful.

L.V.H. 22:46
Yeah, it's so fun. Okay, so what's like a giant sandbox?

Scott Benner 22:52
What if it's actually what it looks like? is if you had to sell camping to me if you were you know I we were friends and you're like Scott I'm going camping then the next thing would happen is I would say oh have a good time and then you said no no I want you to come with me because what is great about it because people who love it love it and I want to understand more why that is

L.V.H. 23:18
because you get that opportunity to just like leave the city whatever even if the big city small city whatever city it is and not sort of be in the real world for a while like you don't have to have your newspaper your or your television paying the news 24 seven you don't have internet to access so you're not like oh I have to get on my work email and check my emails. It's just like such a good way to relax and like not thinking about your day to day life. Ah besides the fact that I do think about day to day life in terms of managing my diabetes while I'm out there but that's like a different part of my day to day life.

Scott Benner 24:08
I have to say I'm not there right now but these pictures are relaxing. So I imagine being there must be incredibly soothing. But she you just from where you end up camping to wherever you park your car. Do you hike a little bit to where you camp.

L.V.H. 24:27
Um, typically no we, I can I can. And I will get into that but a lot of camping sites you can if you're like, I'll call it car camping. Because you have your car right there. You're still sleeping in a tent, but like, you don't have to worry about bear boxes. And that you just sort of hide your food and your trunk of your car overnight. So we do a lot like at the great sand dunes we did that. The other smaller ones, that's what we've done surfing but you can do like backpacking, where you have like a bag full of stuff your pants is at the bottom of your backpack. And then you hike into you just go Where are you gonna pitch your tent? Yeah,

Scott Benner 25:30
but you more more frequently you have access to your vehicle is that is that does that have anything to do with your diabetes are just in general, that's just where your comfort level is.

L.V.H. 25:41
Where are where my comfort level is and where the supplies I have. I'm still sort of working my way to like, have all this fun camping gear that's necessary to do trips like backpacking and things like that. But right now I'm just sort of building the base of I have my pet I have like the stuff I need to cook and I have my sleeping bag and pillow. And then from there, it's nice. Yeah. Yeah, well, you

Scott Benner 26:18
might have Solvay we'll see So wait, but are there bears here at this Sand Dunes National Park thing

L.V.H. 26:25
um Yeah, yeah, not so not in the national park but our first year when we camp there the there was a bear sighting. So the camp host who is like a forest he works for the US Forest Service people service Thank you. He will come around and say like, hey, there's been a bear sighting this week. We thought Tuesday we haven't seen it since but at night make sure all your food is packed up in your car or hidden and they have most depending on the campsite or type of campsite you go to they will have like a bear box storage that you can use right there on your campsite. If it's one that you reserve but or I can pull up to any sort of national forest that allows campaign or just forest in general and just pitch a tent wherever I want to. So there's all different types of camping and how you pick where you're going to stay and all that if

Scott Benner 27:40
you bring me I'm sleeping in the car with the food just so you know. There's there's something about the thinness of attend. That would preclude me from laying it out. Yeah. Do you ever feel exposed?

L.V.H. 28:00
Um, no. I think it's the equipment. Right I have in terms of laying on the ground like I have a sleeping pad it's this thin pad that you roll it up when you're packing it but then when you get to the campsite, all you have to do is like blow some air in it as if you're like blowing up a balloon or something and then it's this nice pad that you get to sleep on and so you don't be able to rock so the ground too much. Gotcha. And then the tent and this because you're like tight in your sleeping bag. I feel like that keeps you one warm but to like nestled in a way where you're like oh I'm not like exposed to like everything going on around me.

Scott Benner 28:55
So what do you bring with you besides your personal comfort? Like what do you bring with you for diabetes?

g vo hypo pan has no visible needle, and it's the first pre mixed autoinjector of glucagon for very low blood sugar in adults and kids with diabetes ages two and above. Not only is chivo hypo pen simple to administer, but it's simple to learn more about. All you have to do is go to G evoke glucagon.com forward slash juicebox g vo shouldn't be used in patients with insulin Noma or pheochromocytoma. Visit g Vogue glucagon.com slash risk.

Did you know that T 1d family members are at a 15 times greater risk to develop Type One Diabetes than the general population. T one D Risk Screening through trial net will detect if you are in the early stages of type one diabetes. Now if you're identified as at risk trial net will be there for you. If your screening results show that you are in early stages of type one diabetes, you may be eligible to join a prevention study that is testing the ways to slow or stop the disease progression trial that also has ongoing monitoring by top tier one D researchers. And if you develop Type One Diabetes being monitored in a clinical research study like trial that decreases your chances of decay from 30% to 3%. On top of all that, a future with Type One Diabetes begins with you because research can only advance with participants. So this is something that will help you and help everyone. Oh, and by the way, it's completely free to trial net.org forward slash juicebox when you get there, make sure you let trialnet know that you heard about them through the Juicebox Podcast, and then just complete the process. Wouldn't you rather know? Maybe there's something you can do about it. Trial net.org forward slash juicebox links to trial net g vo Kibo pen and all of the sponsors are right there in the shownotes of your podcast player. And at Juicebox podcast.com. When you support the sponsors, you are supporting the show.

L.V.H. 31:25
I bring when the first time I went camping I brought in some pens, and just the pen caps that go with it. I don't and this was probably bad. I don't think I brought extra insulin. I think I just brought like the pen that I happen to be using both the lantis and humalog. One at the time, and I was like, well I won't run out because I don't know how to use this in general. But that was less than a month into being diagnosed was that first camping trip. And then since then, the first time we went to great sand dunes was the day after I got my tea slim. So now I bring whatever vial of insulin I'm using at the time and at least an extra one depending on how long I'm camping for. depending on the weather situation, I have different ways I store them. What I bring Smarties is what I use as Hello snack. So I my hiking backpack. Always just has a bag of Smarties in it. What else do I bring?

Scott Benner 32:43
Well, so the first time you go you don't really know a ton about diabetes. And you just brown like hey, here's my insulin, I'll bring it along. You didn't think about having a backup? You didn't. You didn't and you made How long were you there that first time because you made out all right, obviously.

L.V.H. 32:59
I was there. We were there for about a week, five days.

Scott Benner 33:04
There you go. You made in the week with some insulin pens in your hand, basically. Yes. Yeah. I think that's good for people to hear honestly. Not that not that you wouldn't want to be prepared for something going wrong because you know, you could do that five times in a row and one of those times you're going to lose the pan or something like that's gonna happen. Yeah. But still, it's good for people not to be scared and to realize that that that you did that I think is really cool. But you, as times passed, have become a little more thoughtful about what you've brought with you. How do you how do you keep cold

L.V.H. 33:42
so if I'm camping in the summer, I have a cooler bag that has a pocket on the outside. So that keep it cold during the day. We always make sure that bag is somewhere in the shade, but not in the trunk of the car because the trunk heats up faster. And then I put the input on the outside of that bag. That way it's not in the ice water. Because I smell like ice water. That's what I do during the summer like hot month. When we camp in October, I really don't have to worry about the cold as much because the daytime and nighttime is cold and it's how do I keep it from not freezing overnight. And I sleep with it with me and my sleeping bag to get body heat on it.

Scott Benner 34:41
It's interesting. So in the warmer weather you have to keep it cold in the colder weather. You might have to keep it warm. Yes. How cold does it get out there?

L.V.H. 34:52
In October it was below freezing below 32 overnight

Scott Benner 34:57
now you've lost me so you were outside when it was cold. Freezing and yet you slept outside the tent Yeah, how warm is it in the tent in that scenario

L.V.H. 35:07
um well your I guess it's the tent keeps your body heat and whoever else is in that tent with you but the real way that you stay warm is the sleeping bags are made I think mine is for up to 20 degrees so it's made to keep you warm and every sleeping bag has a different temperature range and rating Yeah,

Scott Benner 35:35
but when you're in the sleeping bag Are you cold?

L.V.H. 35:39
Typically no Wow. The first when I first started camping I was still using my sleeping bag from that Indian princesses so like I said North Face sleeping bag and I had had it since I was in like fourth grade and it was not like one that was heavy curated. So there is a pretty funny photo of me like it's like five jackets on like two hats like trying to fit my 20 what I was probably 26 at the time like body in this like sleeping bag meant for a fourth grader so that was not the best experience I upped my sleep bag game since

Scott Benner 36:23
I would imagine none of your friends tried to like cut you off and say hey you you're using a child sleeping bag.

L.V.H. 36:32
I think I just went with what I had and people were like, what and I was like well, I'm gonna get a new one soon. Just gotta

Scott Benner 36:40
be better friends.

I have a picture in my head of you in like a three foot long pink sleeping bag with seven minutes. I have to be honest with you if if the ceiling fan in my bedroom catches my bare shoulder while I'm sleeping I'm very unhappy I don't know if I'm cut out for this is what I'm getting at. Although it sounds like lovely like explain the day like you wake up in the morning when you're out like doing something like that. You just what do you do?

L.V.H. 37:15
First thing the morning is very, it's early, because the sunrise is early so you're up along with the sun most of the time. And it's still I don't know if this fact is true, but I'm gonna say it because I like to believe it. The coldest time of the day in the state of Colorado is that hour between seven or yes seven and eight o'clock. Which you would think it would be like overnight when it's like dark out. But that's the coldest time so we're always the coffee drinkers make their coffee on the camping stove. And then I heat up some water drink some tea. We throw breakfast on the stove, which is typically a eggs. My friend over COVID got really into baking bread along with everyone else in the world and sourdough bread so now that's in the realm of things and I'm still learning how to eat that bread in the morning because it's so good but my insulin is if I carbee things in the morning I spiked higher than I would like to so I'm still working on that piece in terms of how am I managing this but I could eat that same bread for lunch and not have as big of an effect

Scott Benner 38:47
you're getting some sort of like a feed on the floor or like raw yeah being alive and waking up and feeling you know that your needs and exam anxiety about being alive and everything like that is giving you the chance

L.V.H. 39:00
to get eaten by the bears last night.

Scott Benner 39:04
Right now I don't understand at all what you're saying like give a gun you know bear spray?

L.V.H. 39:13
Yeah. All right. Typically has it

Scott Benner 39:16
someone that would be me I don't know I would have my hand It would be my hand.

L.V.H. 39:22
It's in one of the cars that we are bags.

Scott Benner 39:29
Put in your hand with your thumb on the duct tape yourself though. It's so that even if you wake up in the middle of the night, you're prepared to bear spray something I might not be rugged. I think it's

L.V.H. 39:40
now a lot of the people I grew up with when they come out to visit they're like we can do like outdoor things but we're not going to go camp with you but we can stay in like a cabin or something. like okay, that's that's fine. Something outdoors.

Scott Benner 39:58
No I did. I did a cabin once. There was a bear near the cabin and I was like we should leave. This bears that we're in the bears house. It doesn't like it we have. It seems upset. Meanwhile, probably that bear was nice to them. three dogs I've owned in my life. It just wandered around gently. Nobody bothered it. It didn't bother anybody else. The people who were local seem to not even be concerned that it was there. And I was like, Oh, I just didn't want to eat a kid. Although looking back now it could have eaten one of them would have made my life easier. I'm not saying Yeah, but there is one thing. Now No, I'm joking. But so this is kind of really interesting, because you got diabetes, sort of as you found camping, and yet it hasn't. You're learning new things together. How did you find the podcast?

L.V.H. 40:52
Um, I was looking for. I was having a really hard time. That first ball that I had diabetes, working out and not going low or not going high, depending on what type of workout I was doing. And one day, I used to carpool to work with my neighbor, who worked at the same school. And she was like, Oh, I need like, 15 more minutes. But I was already in my car. So I was like, oh, I'll just look up like podcasts that I can listen to you later. And I was never a big podcast person before. Really, before finding the Juicebox Podcast, I had never listened to a lot of podcasts. And I found another one and the guys were just like boring. And then I think I found your Is it a pro tip? Where you talk about exercise? Yeah. Yeah, so I found that one. And then sometime, like, maybe I like listened to it. And it was still on my back my mind. And I would listen to it again, still trying to figure this out. And then at some point, I found the episode, the after dark episode about drinking, like, Oh, this is the right podcast for me now that I have mastered this diabetes. Working out which actually I should not say mastered, diabetes been working out. That's far from true. But I've grown with it. And then I was like, Oh, I'm not the only diabetic drinking. And like, still trying to enjoy that part of what my life was before diabetes, and things I enjoyed. So I was like, oh, and then from there, I just sort of started listening on my way to work or way home if I wasn't carpooling with the other teacher that was like across the street from me. Yeah. And then it's just when we weren't remote, I would listen during my lunch break.

Scott Benner 43:04
Thank you. Thank you. Oh, you know, my is a mom now from the drinking edition of rock. Yeah, she was in Episode 274. And that was the first afterdark that I ever did it to tell you something that I've never said to anybody before. I'm a little bothered that I had to call them after dark. not make sense. Yeah. not bothered, like, I got, you know, I don't opine over often. But there is just part of me that thinks that these are just topics that people who are alive deal with. And I hate that I have to like, say like, Oh, this might be a little too risque or sexy for you. Like, be careful. But in the end, I don't want anybody to trip into an episode. You know, that's about psychedelics. And not know.

L.V.H. 43:56
She was, yeah.

Scott Benner 43:59
But but but so they, so they're branded that way. So that nobody, I don't want people to get triggered and be upset that they heard something that's upsetting, like I and I don't have a good perspective for that, because I just love people's stories. And I don't care what their story is. I don't I don't feel judgment about them. I just, I feel like I'm reporting on it. Like I'm just trying to understand it. So I can have a conversation with somebody who's talking about being bipolar. And I don't feel like the, you know, I don't I don't get upset, like it's hard for me to. I want to make sure I'm clear. I understand why people get upset by upsetting things. But they don't make me upset. So I'm a bad judge of that. So that's why I just call them after dark so that people can know hey, there's something here that maybe you should you know, maybe you want to tread lightly to it. Yeah. Meanwhile, I think there's some of the best conversations in the podcast.

L.V.H. 44:56
I would agree. Yeah. So now proves that like You're This is the teacher side of me coming out like a good listener. Like you can listen to people's stories and hear them for the truth and not be like, Oh, well maybe that's not how you should live your life.

Scott Benner 45:14
Yeah, I mean, I can only tell people how it occurs to me like using the latest one, the psychedelic one as an example, almost everything she said, in my brain, I thought that seems like a bad idea. But what I realized is like, to me, that's a bad idea. But it's a good idea for her and I don't like what do I care you don't I mean, there's a lot of people doing a lot of things in the world, they're not all the same things I'm comfortable with. And I'm glad you like them, I really am I want to do, I'm gonna do more, I'm not gonna, you know, I'm not gonna shy away from it, it's I keep thinking that there'll be an end to them, but there just isn't. You know, and you really have to thank the people who are on the podcast, because like Episode 399, is about heroin addiction. And the and the person who was on and and was that honest for hours about their life was, if I'm remembering correctly, the fourth person who has been addicted to heroin to contact me the first three, four reasons that each one were very good couldn't follow through with recording. Some of them were like legal reasons. Some of them weren't one person thought they'd be put in jail back in jail if they if they said some of the things they were gonna say. So it took me four. And it's not that easy to meet someone who has type one diabetes, uses abuses, or has been injured by heroin, and is willing to talk about a lot of podcasts like finding someone to do that. That's not an easy haul like that. Yeah. You know what I mean? So anyway, and then it all falls on like, like, what if I'm in like a sleepy mode or something like that, that day, and I mess it up. And I'm always worried about messing up the conversations, but I'm glad that you like them. And that you found it. But anyway, my point is, if I had a point, is that you're new to diag, you're new to diabetes. You're young, but you're not young, you're older, but you're not older. You don't need me. And, and you're figuring out type one, it sounds like with, you know, not a lot of help through the medical side. And so far your type one friend is only told you to drink a soda to get through the ER fast. Be there, no offense. And, and so you're you're kind of figuring this out by yourself and at the same time, not limiting what a mid 20s lvh wants to do. Get an Amen. Yeah, that's brave, you know, it's brave, or does it not feel like that while you're doing it?

L.V.H. 47:54
I don't think it feels like that while I'm doing it. And I think because, yeah, I have lived 25 years of my life without diabetes. And then I got it right before this camping trip. And I was like, Well, whatever, like, I'll just figure out the both at the same time, and I just went with it. And I think if I hadn't just gone on that first camping trip after being diagnosed, I don't think I would have continued camping. I think it would have been something where it's like, oh, I have diabetes, I can't do that. Which is not true at all. Like, I can do whatever I want to do with my diabetes, and I'm just going to find a way to make it work.

Scott Benner 48:42
So had you not tried this new thing before you had before you started really understanding the diabetes, but before you really understood it, like I I want to point out that when you're diagnosed, you know nothing. And that as you start gathering information, you still don't know anything. You're just scared because you hear more words, and you have more things in your head that you think are going to happen. And then you figure it out as time goes on. So you were lucky enough to just go on that camping trip before you even knew that that might not be a good idea.

L.V.H. 49:18
Yeah, and my because my dad was still out in Colorado with me at the time. Up until like two days before this camping trip. Hey, just like one request from my family was like, you can go as long as you have the Dexcom like he wasn't gonna leave the state of Colorado until I had a Dexcom and I wasn't allowed to go camping until I had a Dexcom which thinking back on it is probably the smarter way to do things. And I'm thankful I had it because it gave me a little bit more sense of mind of like, all my blood sugar's not 300 like I'm under 182 Majority of my first trip other than, like, randomly at night, but I found out that because I didn't know how to dose for eating handful on handholds and chips at at once, and I didn't know what Pre-Bolus thing was, but

Scott Benner 50:18
but you had that safeguard there. Yeah. Which by the way was doing more for you than that tent would have if a bear came. Also, fair point. Luckily, you obviously have come up against no diabetic bears, because nothing's trying to take your own.

L.V.H. 50:33
Yeah. Yeah, they have not imagined

Scott Benner 50:38
just came up to you and was it took your pen and left, like,

L.V.H. 50:43
smelled it and was like, nope, doesn't smell like something I want to have?

Scott Benner 50:47
I don't know. I'm thinking maybe the bear needs to bears get diabetes. Right? I don't know. We'll figure that out too. Well, so your father understood the gravity at least have a low blood sugar. That's the part that stuck to him during the time you were in the hospital, obviously.

L.V.H. 51:04
Yeah. And I think at my first endocrinologist appointment, I think my endocrinologist made it clear of like, you need to have some way to know while you're sleeping in your apartment alone or in camping world, that your blood sugar is not low, and you need to be woken up somehow.

Scott Benner 51:28
It's nice. It's nice that he figured that out. And I like to that even though you're in your mid 20s. He's like, Listen, I probably stopped telling you what to do a couple of years ago, but on this thing here, this is what I want, or you're not going outside like this. Yeah. Good for you. And he said, we'll talk about the diabetes, or have you ever expanded on that?

L.V.H. 51:49
Me and my dad? Yeah. Yeah. Partially because he, this past November sort of became learned how to manage my pump a little bit for me, and small pieces and just learn more about the punk because I was, I had a liver surgery in the fall. So he came out for that. And he sort of been like my medical guy and comes out to Colorado when I have something medical going on. As much as my mom would my mom, there's just a side note I would have loved and wanted to be there for this surgery. But your COVID and due to her own health was not allowed to travel. And the reason he came out the first time instead of her was she had just left Colorado the day before I was diagnosed. So like she was out visiting. Left, I went to the doctors call them later that night and was like, Hey, I'm going up to the ICU and I didn't even call them before I went to the hospital. I was like we're just gonna figure everything out. And then and then he I was like, Oh, I should call my mom and the nurse was like No, there's really nothing to tell them right now. Like wait until we at least take you up to the ICU and then I'll explain why you're going to ICU because it's not that you're like kind of die I see you but like those are the nurses trained to run the insulin.

Scott Benner 53:29
Do you think there's two different sides of the ICU that you're gonna die side? No.

L.V.H. 53:34
I wasn't like super sick. It was like you just need this infant and this is where you're gonna get

Scott Benner 53:40
it. No kidding. Hey, do you know if you go to a browser and type do bears get right? It's do bear that stung by bees rabies cold up during hibernation period. Somebody wants to know if a bear gets a period but if you hit a spacebar, and then just the D. Do bears get what do you think the first return is? diabetes, diabetes? Do bears get diabetes, then it's do bears get drunk? Do bears get depressed? Do bears get drunk on honey? Do bears get dandelions? bears? Good? So real quick. I want to find out if bears get drunk on dandy lions first. And then they get diabetes. Can a bear good? What is this? There are many videos purporting that shows Apple drunk bears. Here's a and well that's not a dandy line. Why would someone think dandy line and then there'd be no returns on it?

L.V.H. 54:35
Even NPR has had an article Why's that? Grizzlies don't get diabetes like we do. I really do bear I guess in 2014 what people

Scott Benner 54:47
Google is fascinating. Do bears get drunk on diarrhea? Why would someone Google that? Does alcohol cause loose stools? Well, yes it does. But what's that got to do with gone down a strange rabbit hole very quickly. Oh my god, I but we do need to find out if bears get diabetes. Some bears can have their cake and eat it too grizzly bears become diabetic during hibernation and then recover when they awake. Well, that's interesting. I'm gonna have to bear have a bear on one time and ask this question. There we go. I don't think that's gonna work. how fat nasty grizzly bears that are overweight, avoid type like type two diabetes. That's really interesting. Okay, that is not why you're on though. Because that bear Let me tell you this elevation. I'm being serious. Whether the bear has diabetes doesn't have diabetes has diarrhea or doesn't it'll rip you open like a sack of potatoes and kill you. Yeah, that's why I'm not going camping. You have no fear of that whatsoever.

L.V.H. 55:53
I don't, but I'm, you're not the only one. There's so many people that are like, nope, there's animals and bears and things out there. I'm not going to go near it.

Scott Benner 56:04
Snakes on the way.

L.V.H. 56:08
Yeah. We had a pet snake growing up. I

Scott Benner 56:11
don't care. That was in a fish tank.

L.V.H. 56:16
Right? Yeah, yeah, I was in Florida, some tank guy. And one time we clean the cage. I somehow let it out. And it slithered into the bathroom. But hey, it went right to the bathtub. So what kind of snake was it? I think gardener state. That seems reason my brother's pet.

Scott Benner 56:35
I'm just thinking yeah, I don't want to wake up in the morning with a snake in my sleeping bag. Because it's like, oh, it's warm in here.

L.V.H. 56:41
We got to make sure you set the tent up.

Scott Benner 56:45
I'm counting on a zipper to keep a snake away from me.

L.V.H. 56:49
I guess so. Yeah.

Scott Benner 56:50
Do you burn a fire? 24 seven when you're out camping? it's cooler.

L.V.H. 56:56
Yeah, well, yes. But it goes back to the what type of campsite you're at, especially in Colorado because of forest fires.

Unknown Speaker 57:08
Okay.

L.V.H. 57:09
And during the summer, especially this past summer, there's, you have to know what the fire band is, before you build that fire. But most of the time at, if you're at a campsite that you've reserved, they have like a fire. It's like a ring. And it has to be within there. And then, but if you're doing what they call this first campaign where you just pull up to anywhere, and you just pull over and camp, then you probably can't be having that fire. Depending on what the fire band is at the time, but this whole past summer we were at the highest fire band because like Fort Collins was pretty much like, engulfed in flames. Rocky Mountain National Park. I went there the last weekend before it closed down because the fire took part of it. So you just have to be careful. But there's signs everywhere that say like, this is the fire band.

Scott Benner 58:22
Okay. I have to tell you. I am I looked up like more like luxury camping. And it's really expensive.

L.V.H. 58:33
Yeah, yeah. glamping is

Scott Benner 58:35
that what they call it?

L.V.H. 58:36
Yeah,

Scott Benner 58:37
go glamping glamping. What's the g4?

L.V.H. 58:41
glorious. I think really? I don't know, there's a place. I may have just made that up. But we'll

Scott Benner 58:47
find out. But there's a place in Montana where I could I could spend 11 $150 a night to go to be in a tent. Why would I Why would I do that? Oh then you see the view. Look at the view. Oh my god. Maybe I would know if I had 11 $100 maybe I would spend it that's really something. Yeah, I listen.

L.V.H. 59:12
I am a risk camping glamorous.

Scott Benner 59:14
What did you say the first

L.V.H. 59:16
big. I think I said glorious. I don't know why I said that.

Scott Benner 59:19
It was pretty. Pretty nice. Glorious to learn with a G. At least you got a j Can you imagine if you were like if I said what's that g stand for and you said fantastic camping? Yeah, then that'd be embarrassing. Oh, so I have to I have to be honest with you. And maybe you can help me through this a little bit. And then I want to get back before I let you go about about like all the supplies that you bring in things that you're thinking of in the in the beginning, if for the future, but I really like everything about the outdoors. With the exception of dying at the hands of an animal or freezing seems really like glorious to me. I'll use your And so I want that like there's part of me that thinks I want to live in a in a, you know, in a rustic house in Montana in the summer and then get the hell out of there before it gets cold. But I don't know you know, obviously that seems like it's something a wealthy person does like has a summer and a winter home, which I don't think I'd be able to accomplish. But uh, but I mean there's something about it that I find incredibly attractive, I think it would be lightning for my soul and just better for my health and, and just for my visual, you know, I saw myself on a video call this morning with someone and I realized I don't think my face has been in the sun in like a year. And I didn't recognize when I was getting pale, you know what I mean? Like, I want I want to be outside, I don't want to die in the in the pursuit of it. And I don't want to be sticky from humidity, these are my goals. But I wonder if there's a place like that, where I could actually test it out and give it a shot. So

L.V.H. 1:01:04
it would be there's sites that like there's sites where you can find camping sites, ground. But then there are sites that are sort of like Airbnb, but for for like, cabins, okay? That are like, in the wilderness,

Scott Benner 1:01:25
I'm going to look into it because I feel like I could pretty cheaply fly somewhere, you get to think that when COVID is done, air travel is going to be free. So yeah, right out though, I'll be able to fly somewhere. And then do this instead of going to some sort of like a hotel and then just finding the sights like just stay outside instead. Alright, I'm gonna try it. But I'm I'm bringing bear spray is all I'm saying.

L.V.H. 1:01:49
Yeah. Don't do what I do. Oh, my God. Yeah, somewhere.

Scott Benner 1:01:54
I just picture you wandering around outside completely unsafe with one needle with one vial of insulin and you're, and that's it. So

L.V.H. 1:02:05
I'm not the best at packing things. It was just probably why. I was like, Oh, I have my diabetes stuff. That's like the one thing I know I always have. And then past that, it's like, well, I hope it made it in the car. Like I'm in Vail this weekend, or this week. I'm doing a bunch of snowshoeing. I was halfway to Vail on the phone with my sister. And I was like, Oh my god, I forgot my hiking boots. And she was like, What? How that's the one thing you need this weekend, Laura. And I was like, I was like, I just, I don't know, they're always in my car. And I wasn't the last one to drive to the hiking trip. So they're in my house now. So here I am, I bought a pair of boots on my way out here. I was gonna say I was like, I'm not turning around.

Scott Benner 1:03:02
Yeah, my son showed up at a baseball tournament one time without spikes. That was interesting. And he had to borrow somebody else's shoes and play in somebody else's shoes for he literally found approached the game, saw a friend of his playing in the game pre happened previous to his and stop, said I need shoes and Turkish shoes from him. But listen, joking aside, there's something about that freeness in you that I find delightful. And I mean, when I was younger, you describe the way I lived my life. Like I didn't plan a whole lot. I would leave my house without things and have to buy something along the way. And I think there's something kind of there's something kind of great about that. There really is. So and I think Moreover, stressful that way. Whatever. Yeah, cuz you don't have to remember anything. I mean, as long as you can afford boots, I guess it's okay. But so my bigger point is that when I see people online, and they're like, you know, we want to go camping, but my kid was just diagnosed, it feels like they want rules. Like they want someone to tell them. Here's the diabetes camping checklist. Here's the diabetes basketball checklist. Here's and I don't think any of that exists. And yet I want to have the conversation about it. Like I didn't know what you were gonna say, and I never met you before. I mean, you might have been, you could have come on here and been an incredibly type A, I've got a list that tells me you could have a list of lists. I wouldn't have known who you be when you got here, you know, and instead we meet somebody who's recently diagnosed, who is embarking on new, you know, adventures. They're not next to a refrigerator in their house, and you're still doing great and I think in the end that that's a really good thing for people to hear that even you a person who might Forget your shoes, goes camping and doesn't kill themselves. You don't I mean?

L.V.H. 1:05:06
Yeah, I think I see that, too. Yeah, I'm a part of your Facebook group. And everyone, anytime I see a post about camping, I'll chime in. And it's probably the only thing I chime in about. or altitude is the other thing I throw in knowledge about Yeah. But everyone who responds to that post has a different experience and different way they manage their blood sugar's while campaign, just like we all have different ways. managing our blood sugar's when we're not campaign, that it's like, okay, just that reassurance of like, I can do whatever I know best. And I'm not going to nothing bad is gonna happen.

Scott Benner 1:05:53
Yeah, that's what I appreciate about this conversation, really. And I'm, I'm thrilled that it went the way it did. Because in my heart, that is how I feel about all this. I don't think that there's rules for every different kind of person that exists. And, but but in the beginning, for a lot of people, it can really feel that way. Like, you know, we're gonna go on vacation, tell me what to do. I always like the one with like, we're gonna fly for the first time with an insulin pump. What do we have to do? And I always think, like, Well, what do you think other people within Sometimes though, they go to the gate, and they say, they get somebody's attention to go, Hey, we're in an insulin pump. And then they want you and send you through, like I didn't, that doesn't need a podcast episode or a blog post, or you don't I mean, like I, I get confused by the things that people think or content, like, if you step back from this podcast, you have to realize, like by now, if you're not listening, you have to, like really pay attention that in the first 20 minutes of most conversations, I'm learning about people and getting them comfortable. You were kind of nervous, I could tell in the beginning of this, but you like, loosened up. And I feel like I helped you get that right. So yeah, so there's that part of it. And then it's up to me to build a conversation after that. And, and that's, that's kind of my job. But the podcast has never once been, here's a list. Or, you know, I mean, every once in a while, there'll be a Facebook post, it's so valuable, that I'll actually add an extra podcast episode, and I'll be like, Look, here it comes in 20 minutes, I'm gonna read you all these people's responses around this one thing, because it was so thoughtful. And you know, and I think the informations valuable for people, but in general, I want people to kind of understand that there's no, there's just no rules. Like, you got to have your insulin. And you need to take care of yourself. It doesn't matter if you're outside, in a tent, in your house at school. That's what this is. Right? Like, it's going to be wherever you are going to be, you know, are there some thing you know, could I tell you how I keep insulin cold in the summer, I could, but you could figure it out. Like I did. Like, I'm not the standard bearer for how to keep insulin cold in the summertime. I figured something out based on the stuff that was in my house. And it works fine. And so that's how we do it. That doesn't make it a rule. It just makes it what it is. You know what I mean? So I appreciate this a lot. Well, so how are you? Can I ask you the I know I'm gonna keep you a couple extra minutes. I hope you don't mind.

L.V.H. 1:08:38
That's right. I do have to run off eventually to go.

Scott Benner 1:08:41
couple minutes. I promise. I go.

L.V.H. 1:08:44
What am I doing? country scheme? Are you really? Yeah. So very first time, just see

Scott Benner 1:08:51
that and how, Okay, forget that. Forget what I was asking. How did you plan for cross country skiing for the first time.

L.V.H. 1:08:58
So I'm in Vail because my brother and his girlfriend are out from the east coast. And they had enough room for me to stay with them and they're skiing all day, every day and I've had to ACL surgery, so I'm like, I'm not gonna see and tear another ACL. And everyone's like, you should cross country ski. So I figured, hey, while I'm out here, and they have these great like Nordic tracks where they groom this snow specifically for cross country here. Now, Mike, that I'm gonna do one thing that I missed in this break. That's not snowshoeing, because I know how to snowshoe. It's hiking with funny things on your feet. So I was like, I'm gonna buy myself a group lesson on how to cross country as he and that's great and died there. I'm partially taking care of their dog while they ski but they're like, nope. You got to do cross country skiing. You do your podcast. We're going to put the dog in doggy daycare for the day.

Scott Benner 1:10:03
So, Episode 26 and 138 of the podcasts are both with Chris Freeman. He was an Olympic cross country skier who has type one diabetes.

L.V.H. 1:10:12
Oh, I should look into that. Yeah, I don't think I have

Scott Benner 1:10:15
his and I love the way Chris talks about managing type one. He's very Matter of fact, and not, but not mean. Yeah. And so I I've always enjoyed how he's talked about diabetes, but that's not the point. The point is, you're going to go do something that's incredibly vigorous for the first time you're not scared. What do you have with you? What do you got a Dexcom insulin pen and a little bit of fast acting glucose?

L.V.H. 1:10:38
Yeah. Dexcom tandem pump and Smarties thing of water

Scott Benner 1:10:45
down. I like you. Alright, lvh. You rock. You're amazing. What do you would you share with me what you teach? You don't have to tell me where but like, like,

L.V.H. 1:10:56
seventh grade math. Well, math, middle school math, I guess I'll say the last couple of years have been seventh grade

Scott Benner 1:11:03
for you. You like teaching? Yeah, yeah. You look forward to getting back to the building.

L.V.H. 1:11:11
Yes, I am. I'm dying to get back to hell. I joke that like, I am a pretty good online teacher. I've like mastered that. I'll say I'm a mediocre in the building teacher. But just because my very first year of teaching on my own was last year where the last, like, right when you're getting comfortable teaching me like I got this classroom management stuff down, and I now know what I'm doing. And now we're going to get COVID and send Edwin remote. Well, at least I'm young and know technology. Well, well enough.

Scott Benner 1:11:55
So yeah, the kids know you have diabetes.

L.V.H. 1:11:59
They do. I tell them partially because they see the Dexcom I like to wear the desktop on my arm. So I told them right away, like, Hey, I have diabetes. You'll see this. This is what it is. When I'm in the classroom, what I did last year was it I went low and had to have Smarties. They all got a jolly rancher just for fun.

Scott Benner 1:12:26
Nice. Listen, they're probably they're probably rooting for you to get low.

L.V.H. 1:12:31
Right. And one of my students this year, neither her or I are in the building, but she also has type one diabetes, and it's the one thing that we've been able to like connect on. Right away. I was like, I have type one diabetes, and she messaged me individually and was like, me too. Like, you've probably had it longer than I have. But I know more than me.

Scott Benner 1:12:55
How do you handle pizza? Yeah, really funny. Right now for a little kid. Right? All right. Well, I hope you have a great day. I really appreciate you taking the time to do this. I know you have a really wonderful spirit. I appreciate adding it to the show. Thank

L.V.H. 1:13:12
you.

Scott Benner 1:13:15
A huge thank you to one of today's sponsors, g Vogue glucagon, find out more about chivo hypo pan at G Vogue glucagon.com Ford slash juicebox. you spell that GVOKEGL Uc ag o n.com. forward slash juice box. I also want to thank trial net and remind you that trial that is absolutely free to you. Find out if you or someone you love has the markers for type one diabetes, and see if you can't do something about it. Trial net.org forward slash juice box. Tell them the Juicebox Podcast sent you.

Oh geez, I almost forgot. Thank you to lvh for coming on the show. lvh I love talking to you. I wish I had a moniker I'd be SRB it's not as good as lvh What would your moniker be? I feel like this is like when I say like what's the name of the street you grew up on and the name of your first pet? That's your stripper name. Again, like what would your moniker I don't know. I'm having a stroke. Goodbye.

#558 After Dark: Life Struggles

Madi is a young type 1, a mother and more.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Friends, this is Episode 558 of the Juicebox Podcast.

I don't want to give too much away but we're going to be talking to Madi today. Madi is in her mid to early 20s she has type one diabetes. She's a mother, and there's a lot of things going on in her life. I didn't expect this episode to become an afterdark but it is, and I think I'm gonna call it afterdark life struggles. 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 health care plan. or becoming bold with insulin.

I guess now we're recording so don't curse or do anything weird. And

Madi 1:05
I'm from LA that's that's hard.

Scott Benner 1:09
Which is hard not being weird or not cursing.

Madi 1:12
Oh, yes is both I mean I can manage

Scott Benner 1:20
Don't forget to take that T one D exchange survey at T one d exchange.org. forward slash juicebox.

This episode of The Juicebox Podcast is sponsored by the Omni pod dash you may be eligible for a free 30 day trial of the Omni pod dash. Go find out right now at Omni pod comm forward slash Juicebox Podcast is also sponsored by the Dexcom g six continuous glucose monitor you can get started today. or learn more@dexcom.com forward slash juicebox trust me you want a Dexcom

Madi 2:01
My name is Madi. I live in Utah. I was born and raised in Los Angeles. I just turned 24 on Friday. Wow.

Scott Benner 2:15
Happy birthday. Thank you. So tell me I feel bad I was just downstairs getting a drink and my wife said what are you doing? I said I'm recording with a girl named Maddie and I can't remember why she's coming on I can't find any of my notes on it. So I feel bad about that. But let's just start with how this happened. Why are you here?

Madi 2:39
Okay, so I had found your podcast last year Oh gosh, it was probably in like June or July and I just I became obsessed I was like oh my gosh like warehouse suspending I actually like haven't really been a huge podcast person until then. I was like just getting into it. And I was like, this is like, this is amazing. Like this is something that like I've needed. My boyfriend at the time was like you're always listening to this.

Scott Benner 3:11
Wait your boyfriend at the time. loves that your boyfriend at the time. Did I break you up?

Madi 3:17
No, you know, you didn't break.

Scott Benner 3:24
broken up because he was a jerk.

Madi 3:26
No. So I mean he had a son back in Ohio. No, he were trying to work things out. So he was able to have his son out here half the time and that wasn't going as planned. So he went back to be with the son. We decided you know was obviously for the best.

Scott Benner 3:47
Well, that's sad. I'm sorry.

Madi 3:51
I'm sorry. Life happens. That's Yeah, so I found your podcast and I had just been diagnosed with a kind of a semi rare medical condition called epi or exocrine. Pancreatic insufficiency. I've also been type one diabetic for the end of this year will be 17 years. All right,

Scott Benner 4:16
hold on. Maddie. let's not let's not blow through that first thing again. What was the the new diagnosis

Madi 4:23
exocrine pancreatic insufficiency.

Scott Benner 4:30
You should see me typing.

Madi 4:34
It's not It wasn't me spelling out. No,

Scott Benner 4:36
no. I got it. But there was a pause. The pause you heard was me going. Exit crime. Pancreatic insufficiency epi is a condition characterized by deficiency of the exocrine pancreatic enzymes resulting in the inability to digest food properly or mal digestion. That's right. So but that's not that's interesting. That's, that's

Madi 5:05
no, I've got a I've got like, backstory to how I got that

Scott Benner 5:09
you Okay, all right, hold on let's start slow. You were diagnosed you said like 17 years ago. Yeah. How old were you then?

Madi 5:19
So is seven

Scott Benner 5:20
years old. Any memories from that that are worthless.

Madi 5:24
Yeah, all I remember is. So I mean, at that time, I was in soccer. So I was like losing a lot of weight, I was kind of a bigger kid, I was losing a lot of weight, I was drinking a lot of water. My stepfather, like noticed that he actually used to be kind of in the medical field, you know, using EMT stuff like that. And like if he knew love things, but like, you notice like something was going on. He was like, not like, She's fine. So just like losing your like more way, you know, like wetting the bed, constantly thirsty, eating like crazy. But I was just dropping all this weight. And then. So my stepfather, he raised me and my sister and my brother. Our mother died when we were younger. So it was just him until he's working. And like getting really sick at this point. And that had been going on for a couple weeks. And my sister was you know, like trying to take care of me she has a funny thing is is that she actually like laid me on the living room floor. Put a white sheet over Wi Fi calls are usually

Scott Benner 6:41
your voice just went away. And I don't know why are you farther away from where the mic?

Madi 6:46
I'm actually wearing a headset.

Scott Benner 6:49
Oh, you're wearing a headset? Can you hear me through it?

Madi 6:52
No. You're coming through my speaker on the PC. Yeah, I

Scott Benner 6:56
don't know what happened there. I'm sorry. I think because we have like a weird setup. It's possible that when I'm talking and it's coming out of your speakers that your microphones hearing it like you're talking and then we think there's some sound canceling going on so I'm gonna try really hard not to like, haha, you or ask you questions in the middle. I think that might be it. But I did have a question. Like, let me let me ask a couple and then you can get back into the story. So your I'm sorry, your mom passed away when you were younger? How long were your mom and your stepfather together before she passed? You're completely gone. Your voice is completely gone. Shoot. Maddie, I can't hear you at all. Maddie, you know, yeah, now you're back. I don't know what happened there. Anything you said before? Hello? I didn't hear. Shoot, shoot, shoot. Can we try taking the Alright, here's an idea. Do you have an iPhone?

Madi 7:58
I do that.

Scott Benner 7:59
Okay. Do Can we try it without the headset for a minute and see if the mic in the computer? Because the mic sounds great. And then all of a sudden you're just gone for stretches. Okay, yeah, let's try that. I'm gonna unplug it right now. Sorry. Okay, can you hear me? Yeah, it's really unplugged. Yeah. Let's do this. Okay. I think my my voice might rattle a little bit, but I'll just, if we just talk in, we take turns it'll be okay. And you just be cognizant while you're talking a little bit that, that I'm going to try not to interrupt you, but I might have questions. So I'm going to start again and just ask you again. Your seven year diagnosed You said your mom passed early. I was wondering how long your stepfather and mother were together before she passed

Madi 8:50
was about seven years old. My mother actually passed away the same year that I was diagnosed.

Scott Benner 8:56
Oh No kidding. Was it unexpected?

Madi 9:00
No, it was kind of sorta so my mother I'm not sure which hepatitis she had. But she had one of the forms and he got a transplant liver transplant but at that time, they only lasted four years. So after the four years they gave her another transplant actually but her body had rejected it so she unfortunately passed away

Scott Benner 9:31
sorry and I'm not wrong and I that that's something that's treatable now is Yeah, it is actually is that I'm sorry, I know this isn't why you're on the podcast, but does that make any sense? Does that make you mad? That they figured out how to fix a problem your mom had after it was too late for her

Madi 9:49
it's definitely you know like something I do think about you know, just because you know like now there are so many like medical advancements it's like all we could have had that back then you know, like There's so much greater, oh, my life would be completely different. You know,

Scott Benner 10:05
how how do you think? What do you think some of the main ways your life is different? And I'm, I'm stunned that you're that all this happened and your stepfather took care of you and your two sisters. Is that right?

Madi 10:19
As my older sister and a younger brother younger

Scott Benner 10:22
brother, that's lovely. But I want to pick through it a little more. So I'm sorry. So your your stepfather is recently lost his wife, your mom? And then you're diagnosed? Do you feel like at that time looking back? Did Did you did you and your sister your brother feel like his kids? To Him? Do you think what do you think this whole thing brought guys together?

Madi 10:49
So. So our family tree is kind of crazy. So my stepfather? No, my younger brother. That's his biological son. And then me and my older sister. No, we're not, you know, his blood. So he did have to, like adopt us. You know, after my mom passed away by Mike, he basically raised us our money. He did raise us, you know, so we know we did have that connection. Um, unfortunately, you know, he, he was kind of abusive. So that's the reason I actually moved to Utah when I was 18. I moved in with my biological father. And things have been pretty good. Since then. I don't really talk to my stepfather as much anymore. We might actually blocked him on stuff.

Scott Benner 11:48
I'm sorry. I just I hear stories that I just don't expect to hear.

Madi 11:53
I know. Yeah, my life's been pretty crazy. I was gonna say,

Scott Benner 11:57
you need a break. So what was that like growing up then with diabetes with a stepfather? who wasn't the greatest? Oh, it was

Madi 12:08
awful. I was constantly in the hospital. And I you know, there was a got to a point where he wouldn't even see me in the hospital. He just dropped me off at the ER, I'd be admitted. And I'd call him when I was ready to be picked up.

Scott Benner 12:28
Wow. Oh, that's terrible. Okay. Um, oh, okay. Tell me how you ended up in the hospital. And that time, a lot of DK like, I mean, I'm assuming it was hard as a seven year old to take care of your blood sugar. Were you on your own? Was he trying to help you with it at all? Um, after I was first diagnosed, your any of those times through there?

Madi 12:53
Um, oh, I guess like my diagnosis, we finish that, but um, and my sister ended up calling him was like, hey, like, mad, he's really sick. Like, something's wrong. He, like, rushed into the hospital, you know, it's like blue in the face. And they like check my blood sugar. And I was like, 700 something. And they're like, yeah, like, She's like, she has type one diabetes? No, it is like him, you know, having, you know, some medical knowledge feels like, you know, was like, why'd Why didn't I see this? You know, like, I know, all the signs like this. So I mean, after that, like, my diabetes was watched pretty well, like after my diagnosis, like my initial diagnosis. Because also at that time, since my mother had passed away, and me and my sister weren't, are obviously like our father's daughter. We were going through a custody battle. So my biological father and like his family, and, you know, obviously, my family is my stepfather. You know, like, we're all like, you know, pitching in, you know, taking care of me, especially with you know, like the schedule of, you know, like sharing me during that time or so, I mean, it was very well watched in the beginning, and then they're granted, you know, custody to my stepfather. So after all of that was finalized, my biological father and his family moved out to Utah. And

Scott Benner 14:34
that's so he he fought to keep you but then didn't treat you particularly well once he had you.

Madi 14:41
Well, I mean, like, it was my mother's you know, dying wish, you know, for the three of us to stay together. is you know, obviously if my biological father would have wanted me would have been split up. So they thought it was in their best interest to keep us with our stepfather. Obviously they didn't know that he was going to turn out the way he did. Yeah, unfortunately.

Scott Benner 15:06
I'm sorry to hear all that. That's literally terrible. And I don't know another thing to say, other than That's terrible. And I'm really sorry, but you're young. And it sounds like you're in a different position. Now. Did you have a pump all that time when you were younger? We're using MD Oh,

Madi 15:22
so the weird thing is so yeah, I was just doing the MD, our MBA, multiple daily injections. He was actually like, he instilled a fear in me about the pump. Like he was like, someone's gonna like hack into it, or like, the tubing is gonna get kinked and you're gonna go to DK like, instantly and like you're gonna die. Unless that so I always stayed away from the pump.

Scott Benner 15:52
I wonder if it was just too expensive and didn't want you to have it?

Madi 15:55
Well, it was honestly like, it wasn't even that like we could, like I don't want to say but like, we could afford it like he, he made we had really good insurance. But um,

Scott Benner 16:06
it was just scared of it.

Madi 16:08
Yeah, and it's like, um, now that like, you know, like I'm older and you know, like hearing stories from my family and stuff like that. They're like, yeah, like, he kind of wanted to like stay away from technology. It was kind of like weird about it sometimes with certain things and I was like, What?

Scott Benner 16:26
Oh, maybe not just around diabetes. Maybe he's just the cook. Is that what you're saying?

Madi 16:31
Yeah, yeah, he kind of lives Yeah, he's a little psycho easy way to say it.

Scott Benner 16:43
Oh my god, hold on one second.

My mom is trying to tell me something and I'm like totally Mila my friend. Leave me alone. I have a podcast mom. Imagine I'm 49 so stupid. So okay, so you're out in Utah now? And I'm being serious like, like I asked you But first of all, I've enjoyed everything you've said so far, but it didn't answer why you were on the podcast. I know you love that you found that you loved it but what made you reach out to be on it?

Madi 17:27
Oh yeah, that's right. I say get sidetracked and I already took my Adderall this morning. What's wrong with me?

Scott Benner 17:36
I have to tell you the whole podcast is one sidetracked So yeah, that's fine.

Madi 17:42
Um, yes, I found your podcast you know, fell in love with it. And I had noticed that you didn't have an episode on the epi and so I had actually messaged you on Instagram I was like hey Lena, like introduce myself. I was like, I noticed you know like you don't have an episode on there. So I was like, I was recently diagnosed with it like I'd love to talk about it with you. And you're like well, he's like you're like I'm pretty booked out like till April. Um, he was like it was probably it'll probably be best to who talked about it after you've lived with it for some time.

Scott Benner 18:16
Right? And so how long have you How long have you had it now?

Madi 18:26
May June. So it's been over half a year

Scott Benner 18:32
yeah, you get up on like nine months now?

Madi 18:34
Yeah, nine months?

Scott Benner 18:36
Well, let's before we get to it describe how you're just you're type one care was prior to that where you're a one sees how are you managing? How are things going.

Madi 18:46
So before I was actually diagnosed with epi, it was I had my management. It was not good. Um, so like, my last year, it was probably like, before I was diagnosed with the EPA, I was like, in the fourteens is pretty bad. And then my, he's not a he's a nurse practitioner. he's a he's a PA in my PA, physician's assistant on he actually gave me freestyle Liberty sensor. And at the time, I was like, also, like, diagnosed like with the epi. And he's like, yo, like, try this. I'll see you in like a month and see how that's going like with you as well. And I was like, oh, like okay, and after I got the sensor like, my life, or my diabetes management did a complete 180 on my last day when she was eight, so from 14 to eight And I hadn't been in the single digits for my England see since my pregnancy I congratulate he's almost four

Scott Benner 20:10
oh congratulations That's amazing. How did you get to 14? Listen I'm not judging you but I want to have the conversation so 1414 seems like you're trying to not do well and like what has to happen for an agency to be in the 14 like what do you have to not do?

Madi 20:29
Um, obviously I wasn't taking insulin or like I wouldn't on top of my diabetes ny also you know sometimes struggles and you know, eating disorders that I believe Yeah, I actually went to rehab for diabetes diabetes aimia and you 1016 Yeah, yeah, I was like you know, like I I want to be thin I want to be attractive I want to sing You know, like I would pretty so I would omit my insulin you know, I let my blood sugar and high and once I'd feel that you know, like I was like getting into like a bad deal here like I was like getting really sick almost to the point of no return. You know, like I take a whole bunch insulin and you know, like drink electrolytes No, chill out. To try to fix myself enough to a point where I couldn't function. And you know, continue to do that.

Scott Benner 21:33
I didn't realize that you I didn't realize that you had Diab Lamia, or that you had been in treatment for it. And I just the number just made me feel like something had to be there. I didn't realize that was going to be it. So are you did the treatment for the dib Lamia help you or are you still struggling with it? How does that go?

Madi 21:55
It actually definitely did help um, unfortunately not at that time I was I was a couple years younger and kind of stupid. So I actually left against medical advice from the rehab facility um after about like a month or a month and a half or so I was like I'm done you know being stuck in here like I don't want to get out um, but after I like less they're a notice that it actually did help me because my parents ended up giving me an ultimatum when I got home that night they're like either you will follow our rules you know take out all the piercings out of your face you know stop coloring your hair this and that you know have a curfew on or you know, if you're not gonna follow our rules you're gonna have to move out or like find another place to stay. I was like I'm gonna find another place to stay. I actually moved in with my friend that night and being on my own actually helped me a lot it would make me realize you know, like my family's not going to be here you know at the house if something happens to me and take me to the hospital like it's going to be just me like I'm going to be dead you know if I don't if I don't step up a little bit. Um, so I feel like the rehab and moving out after actually did help me be more stable. Um, but then after that, after you know, I had my son and stuff like that. And unfortunately, me and my, my son's father aren't together anymore after No, we had split. Guys thought back into the thought of you know, like, I want to be I want to be pretty for others like I want I want to be attractive to other people. So I did slip back in to that where I wasn't taking care of myself and running my blood sugar, you know, on the higher ends, like lose weight.

Scott Benner 23:59
Is that where you are now? Or are you now now you're doing better?

Madi 24:04
Now I'm doing better like I said, my last day once you ate me to get the recheck. I've been doing a lot better. Like I'm in love. I'm in love with the freestyle dancer. Yeah, it's been a huge, huge help. To me.

Scott Benner 24:19
So Maddie, I am not a professional, anything. I'm seriously like, keep that in mind as we're talking. But you've it's so interesting that you were like, I want to come on the podcast because I have epi and nobody's talked about it yet. Meanwhile, there are like seven other things that are incredibly interesting about you.

Unknown Speaker 24:41
I'm a very interesting person.

Scott Benner 24:44
Yes, you are 100%. But my first question is if I searched your name, your full name, which we're not saying here on Facebook, and I come up with a picture of somebody on a horse is that you

Madi 24:56
know, no, okay. All right. Definitely not definitely no Wouldn't be my full name, it would just be my Maddy. And then my last name.

Scott Benner 25:04
Gotcha. All right. So I'm just trying to get a feeling for who I was talking to. But so So a couple of things, the wanting to look good for other people thing. That's, that that seems to be the driving force behind a number of your issues. Oh yeah, you feel that? And And is there any way like to go to counseling for something like that to get past that because now I have found you when you are adorable, and I don't know why you feel like it's hard to it's hard to look at you, as an outsider in this picture and think that this person feels that way, the way you described. And I can't imagine that it's not to do you know, in no small part to how you grew up. Like, I can't imagine that how you grew up must have been incredibly difficult. And has I would imagine a lot of impacts that you might not even understand or that I understand. It does sound like your father, your birth father, and I guess his wife. It sounds like when they had enough of you. And they and you had enough of them. And you kind of split up then you started seeing the more the realities of your life. I guess that makes sense. Yeah. Okay. And and then the leap Ray did what for you, it showed you trends and where your blood sugars were? Did it help you do better with the insulin? Or did it put a picture to what was going on in your body? And it scare you?

Madi 26:42
Oh, it did a lot. I mean, obviously, you know, like, I saw the trends, and I started kind of becoming like, hyper focused on it. I was like, oh, like, you know, if I change how much time I take, now we're like, you know, just like Pre-Bolus thing, and then, you know, watching what I'm eating and then like watching the spike and know, like everything like that. And it was just like, I became like an obsession.

Scott Benner 27:15
So you focus yourself on your healthy situation, instead of focusing on these, I mean, I really, I really don't know anything about anything, but I and I've never had that feeling in myself. Like, I don't look right for people. And I can't imagine how, how impactful that must be on you when that's the overwhelming feeling in your head. But do you like hyper focus on things and you just hyper focused on your blood sugar this time.

Madi 27:44
And I mean, there's, there's a lot of focus, I mean, like, obviously, you know, there's my blood sugar. Um, and like, it's, you know, obviously, like, doing much, much better now. But it's like, now that I'm not using my, or using my diabetes, specifically, to lose weight. I've been finding other ways, unfortunately. So it's like, I know that my diabetes is an order. But now that I've discovered I have this epi, I have found a new way.

Scott Benner 28:24
So this is gonna sound disconnected from the disorder of diabetes aimia. And I want everybody listening to remember that I don't, I've never had it, and I have no, like, perspective on it. But I can see your pictures. And I don't there, you don't have weight to lose. Is that because you're manipulating it? Or is or do you just feel like you do? And it doesn't? Like, would it not matter how small you got? You would feel like you needed to lose weight.

Madi 28:57
I'm not sure because I mean, there was like a point where I was like, Oh, I think I might be thin enough. And it's very hard for me because yeah, I mean, obviously if you will get my picture you know, I'm not like a bigger person. Um, and you know, I A lot of people are like, oh, like, you're small, you're tiny, you know, like I fit in size, small clothing. You know, I wear size small medium. Um, we're, I think it's just like, physically, I know I look okay, but it's the number on the scale. Because I'm actually a very dense person. So usually I'm like, I'm pretty small. You know, I'm five, six. Like I said, we're so small, but I'm like, I'm like 150 pounds and people were like, there's no way like you weigh that much. I'm like, Yeah, like I'm just I'm super dense. And it's like, I was just seeing that number eight, like, I'm like, I like I want to be smaller. And then it's also you know, I've seen like how I see myself, I feel like people will, you know, accept you more love me more, you know, treat me better, if I'm prettier if I'm more attractive, and that does come, that does obviously, like stem from my childhood. And like the abuse and neglect where, you know, it wasn't being taken care of. And there actually was a point, you know, like I said, I was a bigger kid a little bit. Um, my stepfather, you know, would comment on that, and would force me to work out and he had like, told me like before work, sometimes he's like, you're too fat to go to work. I'm not taking you.

Scott Benner 30:42
I'm sorry.

Madi 30:43
That like, that still affects me to this day.

Scott Benner 30:47
So I mean, I think if there was a therapist here, they would tell you that you should go to therapy and talk about that. Oh, yeah. For sure, that's something you

Madi 30:58
could do. Um, it is, it definitely is. The I like to put on my big girl pants and forget that joke. I was awful. Um, I'm like, oh, like I can I can take care of this.

Scott Benner 31:17
Yeah, I would say Maddie that somebody put you in such a deep hole to start your life that I don't see how you could possibly take care of this by yourself. Like, I think you really need somebody to, to help you with it. Because there's, you have a number of different things going on. Right? So you're somebody's Mom, you're a young person who grew up in an abusive way. Obviously, I think the dyeable emia is because you had the ability to manipulate insulin, but had you not had type one diabetes, I don't know that you wouldn't have ended up with an eating disorder just all the same. Based on how you're telling me he spoke to you, and I mean, that's, you're too fat to go to work is is a level of horrible that I did not expect. You know what I mean? And I think it's possible that when you grow up like that, that starts feeling like, like, that's how people talk to each other. Except I have to tell you, like nobody else. Nobody talks to people like that. Yeah. And if you and if you had been spoken, like, Listen, I don't I don't mean to like, like, rip down to the end of your soul. But you're okay, your mom died when you were seven. That's if just that would have happened. I think I would tell you, you should go to therapy at me, and then you get type one diabetes, if just that happened, I think I might tell you to go to therapy. And you grew up with an abusive stepdad, if just that happened, and somebody was shaming you for your body. And it probably it's not even it's not even based in reality, which can be which I imagine could be even more confusing like somebody's calling you you know, it's like somebody it's like if somebody was calling you blonde and you were a brunette, like you'd be like, I'm not blonde. And and but they kept saying it. Like I don't know how confusing that would be like you're seriously. And then you got another issue another medical issue your five things into reasons why I think you should go talk to a therapist,

Madi 33:20
guys and it gets worse. It gets worse.

Scott Benner 33:25
It gets worse I'm gonna need to take a deep breath so hold on what's actually I'm gonna take a drink Hold on one second.

One Don't we all take a second to talk about Dexcom, makers of the Dexcom g six continuous glucose monitor and why you may want to run right to Dexcom comm forward slash juice box and find out how to get started. I'm just going to tell you what's happening today around here. Arden is sick. She has what I am affectionately calling kennel cough after going back to high school with a bunch of kids who have not seen each other for 18 months. They've all kind of got this cough. They're not particularly sick, maybe a little congested. It's hanging on them. It's not COVID it's just this. I don't know is this cough right? It's been impacting her blood sugar's pretty significantly Arden's needed much more basil, more aggressive boluses her insulin to carb ratio has changed a lot is happening during this illness. So I had her good and stable overnight. She got up went to school this morning, and out of nowhere at about 9am her blood sugar just went from super stable and like 116 to rocketing straight up. We were able, within 45 minutes to stop an arrow straight up that's Dexcom telling you Oh my God, your blood sugar is rising very quickly. She went from 116 to 170 to 183. We were able to cut it off in the 190s and she's 139. Now, two hours later. Now, just imagine If I didn't have the Dexcom g sex, just imagine if it wasn't able to share from Arden to me. No one would have ever known that we would have known for three hours until we tested for a meal that Arden's blood sugar had jumped up like that. But because of the Dexcom, we knew right away, we were able to make an informed decision about how to manage insulin. And we were able to stop that spike without causing a low later in the middle of an illness that is significantly impacting her blood sugar. Don't feel like I should have to say anything else. Go to dexcom.com forward slash juicebox Get started today, you will not be disappointed. You know when we got that information from Dexcom art and made those adjustments to our insulin through her Omni pod, the insulin pump that she's been using, since she's four years old, and right now she's a senior in high school. Anyway, we needed to make a Bolus we needed to increase her basil. And Arden was able to do that with a few clicks of a button. She didn't have to go to the nurse. She didn't have to pull out a syringe. She just click click click here we go on our way. And when we saw that Bolus work, we took the basil away right away. So we did a Temp Basal increase, then took it away temp and took it back and put it where we needed it. Understand instantaneously no walking to the nurse's office. You know you can't do that on MDI because once you've injected your Basal insulin, it's in there but we were able to use Arden's Basal insulin in conjunction with a Bolus to manipulate the situation. You could do that as well with the Omni pod, which is a tubeless insulin pump, a tubeless insulin pump that you can swim with or bathe with without taking off you know people are like oh, it's not a big deal to take something off while I take a shower. But what if this thing that happened to Arden today happened while she was in the shower, and she wasn't receiving any insulin at all? I think it's important to stay connected to your insulin and within the pod you can here's the last thing on the pod has going that I want to tell you about it's the Omni pod promise and this is how it works there's no need to wait for the next big thing from Omni pod because with the Omni pod promise you can upgrade to Omni pods latest technologies for no additional cost as soon as they're available to you and covered by your insurance terms and conditions apply but you'll be able to find the details at Omni pod comm forward slash juicebox Oh and if you're from Australia hold on for one second let me say one more thing that we're going to get back to Maddie Australians on the pod is now available for you learn more at Omni pod comm forward slash juice box a you the examples used here are from my daughter. Your results may vary. I didn't know this was an after dark episode when when you booked it but it is so that epi is the least interesting thing about you just so you know. But, but at the end, we will go over it so that we can understand it. But we're gonna get through this first. Because I'm right now feeling this happens to me sometimes when I'm doing these episodes like I am now feeling parental towards you, which is reasonable, but one of us is going to get you to therapy today and it's going to be me where I'm gonna. I'm gonna feel like I screwed up before it's over. Okay. But holy, what else is there going on that we don't know about?

Madi 38:26
Um, so, you know, obviously, like, I know, I stopped with the Dibley man and I started using my epi to lose weight. Um, but you know, during that era, I guess like 20 2020 was a crazy year for everyone.

Scott Benner 38:48
But how do you use epi to lose weight

Madi 38:52
so with the epi, um, I'm not able to process digest a lot of facts, facts. So I do so the epi basically is that my pancreas has been so damaged that I no longer release the enzymes to break down foods. And so if I don't take what they call them purtz on pancreatic exit or creating a cane or no pancreatic enzyme Replacement Therapy on so if the physically take pills that are filled with enzymes right before I eat in order to be able to absorb all of the fat and like the nutrition and you know, carbohydrates, proteins like that. So if I don't take them on before I eat, I'm not absorbing everything. So I don't gain as much weight. And I'm like mouth nutrition and it actually makes you know obviously my insulin sensitivity in Same you know, like I barely have to take any insulin because I'm hardly absorbing anything which I in my head I think that's fantastic, but I'm also like losing weight on top of that, which so I mean it's an awful awful thing. Another thing, just manipulating. Um

Scott Benner 40:15
Yeah, I think that's a hell of an insight from you really is that you're very busy in so many different times in your life just trying to manipulate reality to do something where there's a way to live in reality and those things happen as well. You know what I mean? You don't need because it must be exhausting is it not to constantly be thinking about this stuff?

Madi 40:40
Oh, it is. It definitely is. I have a million things on my mind all the time. You know, I'm obviously like my diabetes management on me. Oh, sorry. I was like hiccup on my other, you know, medical conditions. Um, you know, my, my son, you know, My son, you know, me and my son's father aren't together but you know, I do have them half a week and my son actually is in remission for cancer right now. So I mean, it's a lot

Scott Benner 41:14
she's you're gonna kill me Hold on a sec.

Madi 41:17
2020 was a crazy year. Yeah, he was diagnosed March 5 of last year with vitamin COVID. Hit what kind of cancer? Um, he has stage four. rhabdo Myo sarcoma cold is he? He's three and a half right now.

Scott Benner 41:32
Oh, my gosh, I'm sorry. What? What? And he's in remission right now.

Madi 41:37
Yeah, so he has about like four months left of maintenance chemo, and he should be able to ring that bell. So things are good.

Scott Benner 41:46
That's really cool that his prognosis is four more months of chemo and then he gets to call himself in remission or he gets to what

Madi 41:53
is like technically he is and remission now. His PET scans are showing that he's you know, technically cancer free but he does have to finish the maintenance chemo. And then we do some more scans to kind of make it official. I

Scott Benner 42:10
just found a picture of him. He looks just like you.

Madi 42:13
Oh, I wish I wish I could show you a picture of us. And we both have hair as toddlers. We fear doppelgangers.

Scott Benner 42:22
We had this face. And now I'm understanding. I think I'm understanding better why you shaved your head at some point to was

Madi 42:28
Yeah, yeah, it's been almost a year Exactly. I think, well, since we shaved their heads.

Scott Benner 42:35
Maddie, do you? I I'm at the point now where I I want somebody to give you a hug. So you know, it's funny. 20 minutes ago, I thought, wow, this girl's not doing great. And now I think it's possible. You're doing really well, considering everything is happening to you. No, seriously good for you. And I think you are like, I mean, I don't know how you. It's a lot. I just don't know another way to say that. That's your 24 gesture and 24. That's just way too much to have to do in the first 24 years of your life. So how do we? I mean, what do you have a plan for moving forward? Like do you have a goal for yourself?

Madi 43:29
I mean, my, my ultimate dream would be to live off my art. I've always loved art doing ever since like November, pre COVID. I was a tattoo apprentice for a while that was fun.

Scott Benner 43:48
She, you want to do you want to be a tattoo artist?

Madi 43:52
Possibly. I mean, since you know I stepped away for COVID because of COVID and my son. Um, I've just actually just recently gotten back into making art and selling it. And I think I want to take a minute to kind of explore my own style and make my own pieces and then possibly go back to tattooing.

Scott Benner 44:14
So do you are you drawing or what kind of media

Madi 44:18
so I do a lot of I'm mainly draw, but I'm trying to get into painting right now. I was thinking about taking a class on my local art shop. That would be really cool.

Scott Benner 44:30
Okay, how about your How about your mental health stuff? What's the play for that? Like? I don't, I don't think you can just hope that it's going to, oh,

Madi 44:43
I actually I actually had an appointment. I set up an appointment with my therapist on Monday, but I was in California this past weekend to visit my sister for my birthday. So I was supposed to come back on Sunday and then go to my appointment Monday and then she convinced me to stay another day. Um, so I missed my appointment. So I have to reschedule that.

Scott Benner 45:03
This is a startup appointment.

Madi 45:06
Yeah, it's a new startup. Okay. I mean, I've seen the guy before, but it's been so long that I have to do like another new patient appointment.

Scott Benner 45:15
Yeah. What if I asked you to promise me to just go every week? Would you do that?

Madi 45:21
Yeah, I actually used to go see him weekly. And then we started spacing it out.

Scott Benner 45:25
wasn't helping.

Madi 45:27
But was Yeah.

Scott Benner 45:28
Okay. I don't know you have, you have things that I don't have any perspective on, other than from the podcast. And I don't know, I feel like I'm supposed to say something here. And I don't know what to say. And I'm a little I'm you, you've made me feel lost. You didn't do anything wrong. But But, but the conversation has made me feel like a little lost. I feel like, if you were my daughter, I would, I would want to encourage you to take your enzyme pills before you eat. And use your insulin. Get your a one C as low as you can get your blood sugar's as stable as possible. You know, take nutrition and that your body needs. And try to believe that you're perfect the way you are, and don't need to look any different than however you look. I don't know how I would do that for you. But that is what I would want to do for you. See, welcome. Are you gonna cry yourself, swear to God, if you cry, Maddie, I'm gonna cry.

Oh, my God, I am, I am incredibly sad that you didn't get someone to care about you like that when you were little. But I don't think that that means that somebody isn't going to care about you like that, or that. At the very least, you shouldn't care about yourself like that. So maybe instead of looking for other people, to make you feel how you want to feel, maybe just the confidence that you are those things could come from yourself. I don't know if that's too much to ask. But I don't see that there's anything wrong with you that needs to be fixed from talking to you, or from looking at your life and photographs, you know, I realized that's a pretty removed thing still, but you don't have much going on that couldn't be that couldn't be made much better. And if you're having trouble doing it for yourself right now, maybe do it for your son, and then work into doing it for yourself, right? Because he's going to need you for a long time. And you don't want to make him. You don't want to do something inadvertently. That's going to have him 24 years old somewhere telling somebody Yeah, I have an eating disorder. I grew up watching my mom do that. And it's stuck to me. Because that could happen. You know? Yeah. Oh my god, I'm so sorry. I don't know. After all that. You're you must have sat in a room and thought cancer. Are you serious? Like, do you scream at the at this? Oh, yeah.

Madi 48:18
Oh, yeah. like you wouldn't believe. My sister, you know, that I grew up with him. He's like, my number one, you know, um, you know, I called her and told her that night that, you know, we heard and she flew out the next morning, and it was hard because, you know, like, at the, you know, I did you know, like, step out, and I was just, like, cursing the heavens, you know, like, Oh, good. There'll be one more thing, you know, like, just really, really? And she like, No, just like, looked me in the face. And she was like, you know, obviously, like, I tell her everything. She knows everything I've gone through and she's like, I'm so sorry Maddie. Like, it hurt me seeing how hurt she was that I have been so hurt. You know? I'm so sorry. Like, like, everything.

Scott Benner 49:14
A lot of pain. And it's too it's too much for Listen, if you were 24 and raised by the two greatest parents on the face of the planet, I don't know how you'd be ready for this. Seriously, I I don't I would just feel like it would be too much. When you said there's more and it's worse. I thought how she's foolish. Like how is it going to be worse than this? You know. And there it is. It it is but it doesn't change it so there's a there's got to be a delineation between how sad This is and how unfair This is. And the fact that it is like this, and they like it or not. You're the mom and you're you're the one who's got the ability. To guide this ship in the right direction, do you don't mean like there's no one else? Like you're you know, you're not with your, your son's father?

Madi 50:08
You mean he's still like in his life? Oh, that's, that's good. Okay, yeah.

Scott Benner 50:16
But still, as you get older, you know, your son's probably going to gravitate towards being with his mom. And you know, you're going to make a lot of big decisions, and you're going to do things that are going to shape his existence and yours. And you have so much time, like, for all the I mean, that's, I think the really good news and all this is that for all the bad things that have happened, you're only 24. Now that might be confusing to you, because you're as old as you've ever been before. And so you feel like you're really old. But you're, you're barely starting, like life has literally just begun for you, your brains not even done forming yet. I don't know if you realize, okay, so you have, you have, you know, decades ahead of you way more time ahead of you than you have behind you. And there could possibly be a day in the future, where you don't remember your life, the way you're talking about it now, where you've built a new life. That is, is a celebration, and a joy. And that's how you think of life. And that's how your son will think of life. Like I think that's like really important to remember that just because all this stuff happened doesn't mean this is who you are, you could easily be somebody else starting right now. And I mean, look how easy it is you take your enzyme pill and take care of your blood sugar, and you've just eliminated some really big problems. You know what I mean? Yeah, and then talk to the therapist. And I would probably go out in the middle of the night and run in the desert and scream a little bit too. That sounds like a good idea. But don't because you'll run into a cactus and be killed by a hill a monster, you don't have any. Okay, stay inside.

Madi 51:59
It's actually really out there.

Scott Benner 52:03
Trust me, You never listen until you until you right what's going on here I would be, I would be worried that anything that like if you ever walk outside and they complain, it's gonna fall on your head. Because I feel like I feel like you know, a mountain is gonna fall over on me or something right now, like, that's my leg. saying, like, you'll just like if you if you went, if you went to the Grand Canyon, it would eat you get an amen, like you should stay away from all kinds of falls in class, wrap yourself up a little bit. I know that I I know that. So not to keeping in mind, I'm not a therapist, and I'm just a person chatting with you. I want to give you a little perspective on my side a little bit. And this is the one thing that no matter how many people I talked to, who have some sort of an eating disorder, I know that I know what it is like I understand that just your brain just does not see yourself the way you are. Right and that it's it pushes all this on you but being able to see your pictures, it makes it really shocking on my end, that you feel the way you described. And I think that that's a good indication that it's something that was caused by something else and that therapy really could help you untangle it and separate the pain you felt as a child from how you see yourself now that is my guess. Like i would i would i would really lean into therapy and i would i would really lean into how you see yourself and that eating disorder in that therapy seriously because you're not the person you think you are.

Madi 53:50
I know like logically I know

Scott Benner 53:53
no i and I'm sorry to even say it because I know you know and I know that's not the point but i think i think that that's a good jumping in spot to try to help yourself because that's it's just I don't know it's terrible that you're spending so much time and effort and thought on something that's just really a bullshit dia that some jackass put in your head when you were a kid. You know what I mean? Yeah, yeah. All right. Holy Should we take a break or go for a walk or I feel like I should smoke a cigarette I don't even I don't even certain what to do here is their I guess you probably want to tell all those people who say that I'm the proud owner of useless pancreas that their pancreas is not that useless, right? It doesn't

Madi 54:43
really mines like at most 5% functioning right now. So

Scott Benner 54:49
you know how people would type one or like my pancreas doesn't work and it still does a lot of things. Like help you digest your food. So I mean, like it would be I wish people knew that I know it's just a joke but you know it's not a useless pancreas it's just a seriously diminished pancreas it's not really the pancreas anyway, it's the beta cells but let's not get too technical it'll, it'll ruin everybody's t shirts. Alright, do you have any questions for me? Is there anything you want to talk about that we haven't?

Madi 55:23
Um I guess like really quickly I can just go over like how my mismanagement my diabetes led to me EPA, please say hello obviously, like I said, You know, I was diagnosed when I was seven. I wasn't, you know, taking care of, at all early on, I was kind of just know, I left to take care of it. By myself, you know, like, after all the custody battles and stuff and after that, you know, always in and out of hospital, like probably like every three months. And I moved here to Utah, and I was, you know, like, things are all everything is gonna be fixed everything for me better, you know, obviously, that wasn't the case, I was still you know, in my bad habits. Um, you know, I got really bad to the point and December of 2015, actually went into a coma because of that. And I, I survived, and I started, I went to rehab after that. And then, you know, I started taking care of myself a little bit better, I ended up you know, getting pregnant and I took care of myself then. Then after that, I just, like, slowly started like, declining, like back into my old ways. And then now after, you know, me and my son's father, that's what you know, I had gotten a little worse, a little worse, and I started going to the hospital again. And then I got the freestyle and like, everything started getting better. But then I noticed I started having like, really, really terrible stomach issues. And like, it got to a point where I was like, this is affecting, like my daily living like the quality of my daily life, like I have to get it checked out, something's wrong. Anyway, they did the tests and stuff and they took an ultrasound like they put a camera down, or an ultrasound machine, whatever you want to call it down my throat and take ultrasound of my pancreas. And they're like, you definitely have chronic pancreatitis. Like your pancreas is riddled with calcifications. Because of all of your mismanagement, like you, obviously, like never, basically never taken care of yourself for like a very, very long period of time. Like, oh, like over a year, like, it's just like you like, Bad. Bad days. But yeah, so they're like, you know, with all the other tests we've ran on you, you also have exocrine pancreatic insufficiency, you're gonna have to take these enzymes right before you eat every time for the rest of your life as well. Sounds like awesome. Awesome.

Scott Benner 58:14
Okay. Can I ask you after all this? Have you? avoided like anesthetizing yourself through like hard drugs and drinking? Do you not do that stuff? Now? How did you avoid all that? Cuz, you know, I just like, there's a moment while we were talking when I realized, like, this girl doesn't get high and she doesn't drink but I don't know how you didn't like fall into that.

Madi 58:43
I mean, like, you know, like I smoke like weed here and there, you know, I'll socially drink. Actually, I can't drink now because of my epi. Um, but before you know I go like socially drink but I've never gone like really hard into it.

Scott Benner 58:59
Yeah, let's face it. I mean, it's, it's, I'm happy for you, but it's kind of fascinating. Like it feels like the kind of story that that ends with, you know, a drumroll at the end and they're like, and so I've been off heroin for three weeks. Like it just felt like it was heading that way and then I realized it wasn't and I was like, I think it's possible you're the strongest 24 year old person I've ever met in my life. Like that's what I've come up with that many. Yeah, now that is what I've come up with. And I think that if you I think that if you can get on top of some of this other stuff, you might see a lot of success from that strength. You know, like imagine where it might take you if it wasn't so busy fighting all this crap.

Madi 59:41
It's been like besides like, like I saw like, my diabetes is doing like well now on like, it's just pretty much my epi that I'm not managing. Besides that, you know, everything else in my life is going pretty good. You know, like I said, like, I'm a single mom. And I'm like I said, his He hasn't had the time. You know, I have my own apartment. I pay my car payment. I have the dog. I'm living life on my own little bit.

Scott Benner 1:00:13
Yeah, that's amazing. I think that I'm sorry my voice is echoing it confused me for a second. I think it sounds like you're doing terrific and it sounds like you're moving in the right direction. I just don't think you should be hard headed about taking help about it. Because I think you can probably get where you're going more efficiently and probably more quickly. Oh, yeah. You know, with with somebody says assistance.

Madi 1:00:37
I'm very stubborn, unfortunately. And I know it.

Scott Benner 1:00:41
Stop that. Okay. Please. Holy crap is there I want to make sure is there anything else you missed anything?

Madi 1:00:51
I think that might be it, I think. Okay. All right. If you want to part two, we can do a part two. Just keep on going.

Scott Benner 1:00:59
I don't know I don't see how you don't get to come back on every year for as long as I do this podcast. There's a couple of people. I'm telling you there are a couple of people I've said that too and you are definitely we're gonna stop the recording and I'm going to make that offer to you 100%. First, a huge thank you to Maddie for coming on the show and sharing her life with us. And also need to thank and I also want to thank Dexcom, makers of the Dexcom g six continuous glucose monitor you can find out more@dexcom.com forward slash juice box there's also links in the show notes of your podcast player and links to all the advertisers at Juicebox Podcast comm when you click the links you're hoping to show and don't forget to find out about that on the pod on the pod.com forward slash juice box and of course for you Australians on the pod.com forward slash juice box a you check into that free 30 day trial the Omni pod dash you may be eligible. And don't forget about the Omni pod promise.

There are many series inside of the Juicebox Podcast This one is after dark. Other after dark episodes include eating disorders, diabetes, complications, being the child of divorce, living with bipolar disorder, sexual assault and PTSD using psychedelics heroin addiction, Ballymena and depression, divorce and co parenting having sex from both a male and female perspective when you have type one diabetes, depression and self harm trauma, addiction, drinking and smoking weed check them out at Juicebox Podcast comm you can just scroll down a little bit till the after dark then you'll see all the series actually algorithm pumping, how we eat all different kinds of ways that people eat when they have diabetes. The variable series which is a new and I dare I say fun series short episodes talking about different variables that impact your blood sugar's, there's the finding diabetes, which is the series that defines the terms that you use every day and may not understand. And of course the diabetes pro tip episodes. I'm very very proud of them. I think you should give them a try. Okay, well, that was sort of anticlimactic at the end. So let me like ramped the energy back up and say thanks so much again for listening. I appreciate it when you guys share the show with other people show is doing incredibly well because of you because you're sharing it. If you're enjoying it, please leave a beautiful rating and review wherever you listen. But most of all, tell someone about the show. It's how it grows. I'll be back very soon with another episode of the Juicebox Podcast. I appreciate you guys.