#699 Don't Feed the Fear

Carlie has type 1 diabetes and talks about life.

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

Scott Benner 0:00
Hello friends, and welcome to episode 699 of the Juicebox Podcast

I recorded this episode many months ago and enjoy the conversation thoroughly. Just recently, I put an edit on the show taken out the noises and stuff like that putting in the ads, etc. Enjoyed it again. And yet I have no idea how to explain it to you. So I'm just going to tell you that this is Carly, she has type one diabetes, and I think you're gonna love this episode. While you're listening, 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. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, I really hope you'll go to T one D exchange.org. Ford slash juicebox. Join the registry. Take the survey the survey is very short. It will be easy to do. And your answers help people living with type one diabetes. It's absolutely anonymous and completely HIPAA compliant. T one D exchange.org. Forward slash Juicebox.

Podcast this episode of The Juicebox Podcast is sponsored by touched by Type One had to touch by type one.org. Find them on Facebook and Instagram and see what they're up to touched by type one.org. The podcast is also sponsored by Dexcom, makers of the Dexcom G six continuous glucose monitor. You can find out more about Dexcom. And perhaps get a free 10 day trial of the Dexcom G six by going to dexcom.com Ford slash Juicebox. Podcast is also sponsored today by the Contour Next One blood glucose meter. This is the meter my daughter carries. It's astounding. I love it. It really is the best meter I've ever used. Contour next one.com forward slash juice box. It fits nicely in your hand and in your pocket. And it's super accurate. That's pretty much all you need to know. And I'll probably tell you more later anyway.

Carlie 2:31
Hi, my name is Carly. I'm 25 years old and I'm from Ontario, Canada. And I've been a type one diabetic since 2003. I was six years old and I was diagnosed. So I've been a diabetic for over 18 years now.

Scott Benner 2:44
Wow. It's like 1617 years ago.

Carlie 2:48
Yeah, I'm I'm bad at math too. Every time I listen to you talk about math on the podcast. I'm like, you know, I can relate.

Scott Benner 2:54
We can do it together. Hold on 2003 I would add 10 to that to make it 2013 If you had another 10 you go past where you are now. So maybe yeah, it's 18 years.

Carlie 3:05
Yeah, I think it is 18 years ago.

Scott Benner 3:08
Yeah. Math is easy.

Carlie 3:11
I'm so bad at math.

Scott Benner 3:13
There are some things that pop into my head immediately and others that don't. And I've long since stopped wondering why that is not slowing me down anymore. Okay, so you're only 25? That seems young. Yeah. That's yeah. You don't feel young do.

Carlie 3:31
So I joke around with my friends a lot. I always go until old and I like you're not old. You're 25 And I'm like, But why did my back hurt already? You know, like I am achy.

Scott Benner 3:41
Who are your friends? How old are your friends?

Carlie 3:43
Oh, my friends are the same age as me. I have some friends that are older. My my now husband I got married last month. He's older than me. He's He's 32. So I guess I can't complain that I'm old when he's seven years older than me.

Scott Benner 3:57
Where did you meet him in the pharmacy looking for something to rub on your back?

Carlie 4:02
No, not even kind of weird. I we both worked at a movie theater. And he was actually my manager. So I met him to the movie theater and yeah, we've been together.

Scott Benner 4:16
Your movie theater people.

Carlie 4:18
Yeah. Popping the popcorn, watching the movies.

Scott Benner 4:23
My wife is a movie theater person.

Carlie 4:26
Oh, really? I didn't know that. That's cool. Oh, no. Hey,

Scott Benner 4:29
friends. I had friends that worked at a movie theater. I got my brother, a job at the movie theater. And then the summers you'd kind of hang out there in the lobby when they weren't working. And then one day one of the managers came back from some like Island vacation with their hair braided and very tan and I made a clear decision in my mind to have sex with that person and now she is downstairs in my dining room working on stuff

Carlie 5:00
But I love that too. Because it's funny that you say that you're friends with the people that work in the theater. Because, like, all of my close, like most of my very close friends now are all people that I worked with, or people that I worked with, and their friends. Like, it's like a big circle of friends. And we're all super close, even though the majority of us don't even work at the movie theater anymore. So

Scott Benner 5:24
from when I'm young, from when I was that young that I still see socially, are all people who worked at that movie theater.

Carlie 5:31
I think I think like cool people were that movie did. And that might be just saying that because I work there. But

Scott Benner 5:37
I'm not certain that my friends are cool, but I think one listens to this. And I mean, I think oh, no, I think he knows he's not cool, you know?

Carlie 5:48
Yeah, that's true. I should I shouldn't be boasting that I'm cool. I'm really not cool. Yeah.

Scott Benner 5:52
Well, okay, so now all this fun talk about movie theaters. And my little trip down memory lane just now with my wife. Leaves me forgetting how old you were when you were diagnosed? Wait, hold on, let's 18 years ago. I don't know how old

Carlie 6:08
I was six. Around six, I think Yeah. Six. All right.

Scott Benner 6:11
Fair enough. Ontario, is that does that experience differ greatly or not differ from what you hear people talk about from American other places?

Carlie 6:25
What do you mean, sorry,

Scott Benner 6:26
but like, like your experience being diagnosed, was it Oh,

Carlie 6:32
it is similar. Because I kind of went through the same kind of I hear like, commonly where it's like, it's very misdiagnosed. And I kind of went through that to where I had all these symptoms. And my parents, like, took me to the pediatrician. And, like, even at one point, my parents would say, like, we did some research, we think it might be diabetes, and they're like, No, it's probably strep throat, let's do a throat culture. And they flogged my throat. And they're like, well, she probably just has a virus. And so it got to the point where I was very sick at the end of it before my diagnosis. So I don't know, I think I think they're definitely I'm hoping like nowadays, it's a lot more known. But yeah, I kind of went through that with my diagnosis where it was, it took a lot for a long time to get to to, oh, this is what it is.

Scott Benner 7:18
20 years ago doing research in Ontario, which is your mom pulled together a consortium of a moose a beaver and like an otter, and they talk to them over on a snowmobile trying to find I.

Carlie 7:29
That's funny. I actually think about that a lot. Because I just wonder, like, I looked up stuff. I'm like, What did you use? Like, was Google a thing in 2003? I don't, I don't even know because I was sick. But I know at one point like before my diagnosis, they actually called, like a diet like a like a, like a nurse hotline. Like, like the weekend that I went to the clinic to get like a blood test. And like they call the hotline when nurse on the hotline told my dad like, oh, you can figure in tomorrow, like there's a snowstorm. So don't go today. Go tomorrow. My mom was like, sorry,

Scott Benner 8:03
did your mom like push back?

Carlie 8:05
Oh, yeah. My mom was like, No, I'm taking her today. Because the thing that drove her to take me in was that I was six and my brother was like a baby at the time. So she lifted me over his baby gate. And like, I was so weak that like, my eyes kind of rolled back into my head. And she was like, Okay, no, we're not waiting till tomorrow. I'm going right now. No, we're not.

Scott Benner 8:24
Did she yell at your father? Oh, this one's gonna die.

Carlie 8:31
Yeah, that's exactly what we sound like. I wouldn't be surprised if I say that at some point.

Scott Benner 8:36
By the way, I got Google as officially launching in 1998.

Carlie 8:40
Okay, okay, so Google has been around, but I wonder you gotta wonder like, how, what kind of how many search options are there back then? Like, definitely not as many as

Scott Benner 8:50
I think to search for. And that's exactly what I ran into the same problem in 2000. Oh, gosh. 2006 When Arden was diagnosed, like we googled like signs and symptoms of type one diabetes and barely got a return. So you know, by the way up, we're gonna get off this right now. But um, Google Incorporated was officially launched in 1998 by Larry Page and Sergey Brin to market Google Search, which has become the most used blah, blah, blah. Hold on Larry Page and Sergey Brin students at Stanford University developed a search algorithm first known as back rub in 1996, with the help of Scott Hassan and Alan Sternberg, back row,

Carlie 9:31
you imagine it sounds like you imagine No, man, could you imagine if it was so called background? I'm gonna backroad that.

Scott Benner 9:40
I'm thinking they're just for creepy. Lonely guys at Stanford are like, Oh, what do I want most in the world? I was like a girl to touch my back. Excellent. Thank you thinking.

Carlie 9:50
I think you're probably right.

Scott Benner 9:53
Whatever happens to us call it that. Okay, so you don't do it. I remember much from your diagnosis, because you have Ireland. But I want to hear about this a little.

Carlie 10:05
Yeah, I actually do have quite like I have like pieces that I remember I was I ended up staying in the hospital, I think for like five days. So I was there for a while. And I remember like bits and pieces of it. I remember I have a weird memory of like, like, right after I got diagnosed, like in the clinic, it was like an urgent care my, my mom was like, Okay, let's go to the dollar store and get some stuff to bring to the hospital. And she like took me to the dollar store that was next door and bought some like coloring books and crayons and all that stuff. And then my dad on the way to the hospital, he drove me and he looked at me and he said something along the lines of I don't think you're gonna be able to eat any sugar anymore. And I was like, what? Like, what, like, what does that mean? Like, I don't want to? Yeah, he was like, this is where diabetes is, you're not gonna be able to eat sugar anymore. And, you know, thank God, that's not true, but. And yeah, just some other like pieces along the way. I remember one moment, I actually wrote a story when I was in high school creative writing class about it. And I got it published on beyond type one, two, which is cool, because I submitted it to them. But it was a story about the moment my mom gave me my first like insulin injection in the hospital. And it was like a really emotional moment for both my mom and I. But I think the funniest part about it, because I titled it when I was in writers craft, our creative writing class, I titled it, I need a cigarette because the nurse who like witnessed it all, like it was a very, like, emotional moment between her and I, the nurse, like, had to walk away and she was like, I need a cigarette. And she took her cigarette after this moment that my mom had to give me my first injection. So that's a moment that stands out. But yeah, like, overall, I remember like, feeling really, really sick up until my diagnosis. I had some like random viruses that happened before like the week before, too. So like, I had a really bad ear infection. And then I had a random full body rash. And then like I just remember feeling so sick, but I didn't want to tell my parents that I felt sick. Because I was petrified of doctors and needles and all that stuff. So I like kept it to myself. And I remember like hearing my parents being super concerned and still not bringing it up to them.

Scott Benner 12:19
I thought you were gonna say that you were afraid they would feed you to the sled dogs if they knew you.

Carlie 12:25
Yeah, that's true. They live in our backyard and we're hungry.

Scott Benner 12:28
Mommy, your father's just worried you can't like she can't suck on the tap and the maple tree anymore. You know like it's just you're painting a picture of a place that I don't know how anyone lives there is it is frozen tundra. Just be honest with frost No, can't find the

Carlie 12:43
roads. You know what is funny is that I live in the southernmost part of Ontario. So it's like, like people thought like the armpit of Canada because it's really humid here.

Scott Benner 12:54
I have to be honest with you under perjury of death. I couldn't point out Ontario on a map.

Carlie 12:59
That's so funny. Oh my gosh, we like like, I don't know, like I we border the states. I live on a border city. So like, we're very Americanized, I feel to because of that. So like I go to a lot of like concerts and not recently, obviously. But

Scott Benner 13:15
yeah, here's what I know. Vancouver, Seattle, Toronto. Like New York ish. Yukon top, middle. Everything else? I have no idea about. Yeah, come on. Tell me what you know about America. Where's Montana? Quick? You have no idea?

Carlie 13:36
Yeah, somewhere in the middle somewhere. Right, by the way? No, I don't think it is either. Maybe from the west on the left. I don't know.

Scott Benner 13:46
What do you cartographer All right. I don't know. So your note to me is is specific. And I don't know where to start. So I'm gonna start with let's see. It really is kind of thorough. I'm reading which is of course, yeah, very exciting for everybody. But I think that I want to start with the first time you felt burned out? And what that felt like, Oh,

Carlie 14:17
yeah. Um, I kind of like I kind of like, the way I think about burnout for me is that it's almost like cyclic or cyclical, like I have gone through moments in time. Where, like, I get really motivated to take care of myself. And then I then I like, get into it for like, a month or two. And then I had stopped and then like, year, a year or two passed, and I'm like, Oh, I gotta I gotta get on this again. And then I get back into it. But for burn over me, I think, Oh, I think the moment that let it really like I started to notice like a change in my care was, I guess I should start with when I was in grade eight. I didn't do my own insulin injections until I was in eighth grade. I had a lot of anxiety around that. So my parents did it. So like, I'm talking like, my dad would like, come at night when I went to a sleepover to do my long lasting, and then he'd be back there in the morning at my friend's house to do my breakfast info. And then like, I went home for lunch every day at school, so I didn't do my own insulin injections. So when I finally got that independence, where I was able to do it on my own, just before I went to high school, I think my parents kind of were like, she's got this, like, we don't need to do anything anymore. And I don't blame them for that at all. Because I did need that independence. But I think I took it on a little too quickly, like, not as prepared as I thought I was. So when I got into high school, like diabetes kind of went on the on the back burner for me, so that I would say high school was one of the burnout kind of started where I just stopped paying as close attention to it as I used to. And then I don't know, like,

Scott Benner 15:54
let me understand. So. Yeah, you you didn't give yourself any injections from the time you were six until you were like 14.

Carlie 16:02
No, I was Yeah, I think I was like 13 When I did my first injection, and I didn't do any of them by myself. Because I when I tell you I had thought I had some bad anxiety like I was on. I was like diagnosed with an anxiety disorder. I was on medication and stuff like that throughout grade school. But I had like very severe anxiety about not even just about like, me not doing it but like nobody, except for my mom and dad could ever do it like so like we didn't have I didn't have a nurse in my grade school. So that's why I went home for lunch every day. I live close to my grade school. My mom was a stay at home mom. All right,

Scott Benner 16:32
tell me what tell me what that felt like, if the idea of someone other than your mom or dad giving you a an injection. Like, you can just say I had anxiety, but tell me what that meant. Like, yeah, if I was coming at you, and you were 11 years old, and I was like, Hey, I'm Scott, I'm gonna give you your shot right now. Would you? Like would you shoot me? Would you rather fight me? Like what was your level of? Would you just cry fall on the floor? What would happen?

Carlie 16:59
I'm probably like, panic would set in anybody like any of my close family members. Now there's two. So like, when I ever had to get like a flu shot, or like any kind of vaccination or stuff like that, when I was younger, too. It wasn't a big ordeal. Like I my parents would have to, like, drag me to the doctor, like I would crawl onto the walls. But I think I just had a lot of anxiety about I don't know, like about like, it was just like so much fear. Like it was gonna go wrong if somebody else did it or like if if it wasn't somebody that I knew, very, like, if it wasn't my mom, or my dad, who I knew had been there for me, like since day one and knew everything about it. And who knew me who I was like, it was just going to be horrible. Even though I knew like, I know that now. That's not true. But it was like, such a real feel for me. Did you?

Scott Benner 17:47
I'm sorry. Did you have any anxiety around anything else?

Carlie 17:54
Yeah, a lot. Um, yeah. Like I, when I was in the fifth grade was one at all the anxiety kind of like, started. And I think this is really strange. I don't know what it's called. When someone has a fear of getting sick. I can't really name for it. Like, um, I don't know how to, I don't want to say it. But okay, I kid got sick in my grade school and, and I suddenly became, it became like, a real fear to get sick at school, like just throw up at school, and then not Tailspin into a whole bunch of other stuff. And then I just became afraid of going to school in general. So my anxiety like took over at that point, and like, I missed, like a month of school. Because of this fear. If I then I wouldn't wasn't eating in the morning, and my parents were like, you kind of have to eat you have diabetes. And I was like, Well, I don't want it because what if I get sick? And yeah, it was just like a, that was another point of anxiety in my life, I guess that I had. I don't know why I'm sharing all of this. I'm like, why am I talking about this?

Scott Benner 18:52
People told me they told me things that they don't mean to so. Is it as it knows a phobia? NASA phobia?

Carlie 19:02
Oh, maybe? I don't know. Maybe I'm getting the the name wrong. That could be it. But yeah, I just Yeah, I don't know why that became like a fear of mine. And then. Yeah, which is? Are you an anxious child? Maybe? Is it firstborn syndrome? Aren't firstborn children? The most anxious?

Scott Benner 19:18
I don't know. Are you still anxious?

Carlie 19:22
Yeah, but I have more control right now. Like I've learned. I'm not on medication or anything like that. If that's what you're if that was you mean, but no, like, I mean, in general, I am an interest.

Scott Benner 19:36
Do you think you're only 25? So you don't really know any? Yeah. So asking you this question is going to be maybe not helpful, but let's ask it anyway. Yeah, I think there's something where your parents young parents.

Unknown Speaker 19:48
Well, that's the one no, okay.

Scott Benner 19:51
But they were interested in in helping, but the minute that you were like, I can do this and Jack And myself, were they just out? Like, did you never talk to them again about diabetes at the beginning of high school when they were like, oh my god, Carly gave herself an injection. Thank God, we can go back to doing the things we like, Was it like that? Or were they were they still involved?

Carlie 20:14
Um, like, my dad was the one that kind of took me to like, endocrinologist appointments and things like that. So he was involved in that way. But then when I became old enough to take myself with a doctor, yeah, I kind of just overall didn't really involve them much in it anymore. Like, occasionally they'd be like, they'd check in on me and be like, like, how's it like, how are you doing? And again, like, I don't place any blame on them for that, because I never once vocalized that I was struggling at any point either. Like, I like, I don't know, I, yeah, it's just, I feel like I got that independence. And I was excited about it too, at the time, and they obviously were excited for me, because you're like, Oh, my God, she's gonna be able to do so much now. On her own, like, she can go places, you can go on trips with her friend and do things now. We don't need to be by her side anymore. But then it was just like, Oh, God, like now I have to like, I don't even know why. But doing my own injection puts so much more like stress onto me. But like, yeah, it eventually just became like, Okay, I don't have to, with my parents not there beside me doing it anymore. I don't have to pay as close attention, I guess, as I did in the

Scott Benner 21:18
past. Okay. So we're not denigrating your parents. I'm just asking questions. Oh, no. Yeah. But um, let me be clear, like you went to doctor's appointments for your type one, right? How frequently Yeah.

Carlie 21:30
Oh, yeah. Like when I was in high school, I guess I would go like the like, the, I don't know what they recommended that every three months, every six months, I was doing that. And then like, when I went to my center going on my own, I would be so anxious that I didn't want to go because I knew I wasn't taking good care of myself as I was in the past. Yeah. So when I was a kid, though, like my, like, my dad went to all the appointments, and my agencies were like, right on target. And like, everything was great. And then it went, it was left into my hands more. So I was just kind of like, Oh, God, I'm slipping up. And I don't want them to know that I'm slipping up. And so I didn't go as often.

Scott Benner 22:04
And you didn't tell them. But they didn't. They didn't ask either.

Carlie 22:08
No, I think it was I think it was kind of like, don't ask, and I don't have to worry about it, even if you like it was almost like that kind of relationship or was like I didn't want to worry them with my personal struggles with diabetes, because they had taken care of me for so long. And I didn't want to put more on to them. And they didn't ask because I think like my mom is a very anxious person too. So I didn't want to make her more anxious about my health, even though I was struggling, so it was kind of like a, like, you know, plug your ears and we'll just pretend.

Scott Benner 22:38
How do you imagine now? Like, do you just talk yourself out of it? Are you smoking a lot of weed? What are you doing? Exactly.

Carlie 22:45
Um, this year has been life changing for me. I, I think I mentioned it in my email to you. But like, in January of this year, I finally was like, I need to get a new endocrinologist because I didn't have a great relationship with my last one. And then I need to, like, get my onesie done. It's been like a year and a half since I had had my previous agency. And I just want to like, get my life in check. Because, you know, I got married last month, and I wanted to, like, get my life together before I like even thought about ever, you know, like starting a family. And now I have a husband and I want to be there for him and that sort of thing. So my ANC in January was 10.6. And that was like the highest recorded one I can think of, I can think back on anyways. And I was like, Okay, I need to make serious changes now. And so I started I had had an Instagram account, but I really reactivated my Instagram account became more active in the community in that way. And then I like for the first time because like, up until January of this year, I had never even I had been doing injections and regular finger picking like I didn't have any technology never had tried a CGM or a pump, nothing like that. So yeah, like I'm now like my last Awan fee was in September, and it was 6.9%. So like, I really turned myself around, and I'm still trying my best to, you know, make changes because I want to be healthy. And

Scott Benner 24:06
what was the what's the difference between a 10 and a SIX? I mean, at a 10? Are you just like counting cars, giving yourself some insulin and never checking again?

Carlie 24:16
Oh, yeah, yeah. Yeah. So like when I was at 10 Point, like, like, like, up until I got that anyone to talk? I have no to like kind of describing like, I would basically. I remember, I knew it was really bad when I had like, when to check my finger. And then I looked back on the last time I had checked my finger and it was like two weeks prior. And I was like, wow, I haven't checked in a long time. Why did I just stop checking? Because the thought of checking my finger and seeing like bad results was so daunting to me that I was like, I'm just not gonna check and I'll just go off how I'm feeling. So I had gotten so used to feeling like absolute trash that it became normal. Yeah, that was just living and Like when I didn't really carb count either. I feel like whenever I ate something, it was like, this is probably worth seven units worth of insulin and then I would just do it and then the only thing I did make sure I do I would do is before bed. I would if I was feeling off in any way I would, I would check. And then I would do my long lasting because I had this fear. Like if I go so high, I may be able to die in my sleep and then my parents would find me and then they would never know that I was struggling this badly. Or you know what I mean? Like I was pretty dark thoughts.

Scott Benner 25:31
Currently Hold on? Yes, yes. Yes. Stop for a second. Okay. We're gonna we're gonna stop talking about diabetes for a second. Okay. Are you okay?

Carlie 25:45
I swear, like, I'm so much better than I was years prior to this. Like this has been the best year for me.

Scott Benner 25:52
I'm glad about that. Oh, that's personally, I'm saying. Can you tell me are there other things you worry about? That aren't reasonable to worry about?

Carlie 26:04
Oh, yeah. But But

Scott Benner 26:08
yeah, what are some of them?

Carlie 26:12
I want to get into it. It's just like I have I have a rational fears.

Scott Benner 26:15
Okay, I want to hear

Carlie 26:19
like and then dark got like I've never really like disposes to people like except for my close friends and Curtis but okay, Curtis is my husband by the way. What I have a couple of irrational fears. And I have like reoccurring nightmares about them. Sometimes. I think I should get a therapist got

Scott Benner 26:37
top three irrational fears. And I'll tell you my three top irrational fears. Okay. Okay. Okay. No, back and forth. You do one and I'll do okay.

Carlie 26:46
Okay. Number one, my biggest fear is somehow being involved in a mass shooting, like finding myself in a situation where I'm someone just shooting up the place. I Yeah,

Scott Benner 27:00
hold on. Just relax. Are you okay? Relax. Just take a big deep breath and hold it for five seconds. No, no. Oh, I'll do it with you. We're ready. All right. Relax. I'm gonna do that a couple times a day. Now my here's one of my irrational fears. Okay. Okay. I don't want to be eaten by a shark.

Carlie 27:23
That's, that's a valid

Scott Benner 27:25
No, no. Here's the funny thing. I don't go in the ocean. Do you know why I have an irrational fear about this? No, I'm gonna tell you, my parents who were terrible parents, okay. And I don't care if they hear this or not. Watch jaws in a movie theater when I was five.

Carlie 27:47
Right? That's a little right.

Scott Benner 27:49
So now I'm and if you said to me, Scott, what are you really worried about? I'd say to you, I'm being eaten by a shark. And you'd say, do you go in the ocean frequently? And I go? No, I don't. So now, let me say to you that that despite how it feels when there's media coverage, there are not a great deal of mass shootings in Canada.

Carlie 28:14
There's literally not.

Scott Benner 28:17
Don't shoot each other. As a matter of course. You know that right? Yeah. Yeah. What they do? They're very stabby.

Carlie 28:26
Oh, yeah, we do. Yeah. There's a bit of that going on.

Scott Benner 28:29
I know. I know. But you don't have any fears about being stabbed? I don't. Scarier than nice to me. I don't know why you tell me why I shouldn't be afraid of shark death.

Carlie 28:42
Why you shouldn't be afraid of sharks.

Scott Benner 28:44
Yeah. Tell me I want you to talk me out of being concerned about being eaten by a shark.

Carlie 28:49
Okay. I don't think you should be afraid of being eaten by a shark because you don't put yourself in a place where sharks live. And the only other place for sharks are or maybe aquarium and you don't go to aquariums either. And you just never run into a shark. So you're going to be totally fine.

Scott Benner 29:07
Let me tell you something I know about those sharks in the aquarium. They're fed so well. That if I jumped in there and rub my ass on their face, they wouldn't bite me. Because they let them swim with other animals and they don't want the shark getting peckish and eaten a bluefin tuna. You understand? So the end you can't get to the top of where you can get into the tanks when you're at the aquarium anyway, now you've done a good job for me. Thank you. I am going to try harder not to worry about being eaten by a shark. Now, okay. Have you ever witnessed that mass shooting?

Carlie 29:41
No, I haven't. And I don't know where the fear came from. But it's Yeah.

Scott Benner 29:48
The Don't Don't worry about where it came from. I want to know how we're going to get rid of it. Because you seem to me like you were worried about so many things that you can You focus on the things you actually should be worried about.

Carlie 30:03
Right? Okay. That's very true.

Scott Benner 30:06
Trust me now. Good. You go tell me your next one.

Carlie 30:10
Okay, what's another one? Um, I think like just people. I love dying at any point in time. Like, an any phone call. Like if my dad calls me while I'm at work. I'm like, someone's dead. Someone's dead. I pick it up. I'm like, who's dead? That's that's my, into my brain goes.

Scott Benner 30:29
I'm gonna ask you a question. Did anyone around you when you were growing up? act that way?

Carlie 30:37
What do you mean? Like anxious?

Scott Benner 30:38
Like, after nine was your mom like, Oh my God, my mom's dead and jump up and grab the phone.

Carlie 30:47
Yeah, my I will. You know, it sounds like I am anxious because of my mom. My mom is is a ball of anxiety. So I know that I get it from her. Like she was the one that like when I was a kid. Like if we went we walked to school, she would be like, have a great day at school. If someone tries to pick you up in the trunk. This is what you're going to do. And like so then all the time organist was like who's going to help you prepare to at any given moment to fight off a stranger who's going to put me in their car?

Scott Benner 31:14
I don't want to laugh at you. So I'm gonna stop laughing. But every day.

Carlie 31:20
Not every day, but like she would she would make me like to like a scared of okay, I'll tell you another one. I have a very irrational fear of bees, Scott. I love insects and animals I have. I am so afraid of bees, like wasps and things like that. When I was a kid, my mom is afraid of them, too. She acts the same way as I do. If one comes near her, like where you're like,

Scott Benner 31:41
stop you. Yeah, I think you act the way she acts.

Carlie 31:45
I do. Implemented I am the way I am because of her. Okay, how cool?

Scott Benner 31:50
No, she probably owes you reparations. But we'll get to that in a second. We'll take them as co pays for your therapy that I'm pretty sure we're gonna send you to so because I think a lot of your issues aren't aren't necessary, Lee. I don't think you're necessarily stuck with them. Because as crazy as this sounds, I don't think you're actually a very anxious person. I just think you have a lot of rules in your head that you're following. Oh, do you see what I'm saying? Because, well, because earlier you said I have it under control better. Which to me means I married a guy who's not Looney skip Rooney. And because he's not constantly worried about things, I'm able to relax and quiet the voices in my head that tells me that everyone's going to drag me into a car and kill me.

Carlie 32:43
This is a podcast or a therapy session because it feels like a therapy session and I'm not not about it.

Scott Benner 32:49
Well partly Listen, at some point when we're 25 minutes into it. And I'm thinking this poor girl, I've got the next 45 minutes to save her life and then she's headed back up to Saskatchewan or wherever the hell she's from. Okay, and and then she's gonna just die in a ball of anxiety. There's like a you there was a moment 15 minutes into this where I thought someone just needs to give you a good bracing slap across the head. And then grab you by the shoulders and shaking go currently currently calling stop. Oh my God, I know, we don't legally do that to people anymore. Although in the 50s it happened all the time. Man, women would just slap each other to stop themselves. I don't know if that was just in the movies I saw or what? But I liked the idea. But we're gonna do it this way through conversation. Is that because you're not allowed to hit people anymore, Carly, it's 2021. Okay, so, so since we can't hit you, which I don't think would work anyway, I'm teasing. I just want to I want you to ask me my next irrational fear.

Carlie 33:53
Scott, what's your next irrational fear?

Scott Benner 33:55
I don't have any more. Oh, just a shark. Yeah, that's the only thing that my parents did to me that I have an irrational fear about.

Carlie 34:04
Like you're doing pretty well. Now. I'll

Scott Benner 34:06
give you another irrational fear that I have. That doesn't come from my parents. Okay. I think no, I don't think I used to think I don't think that's wrong. I used to feel when I was younger, that if we're if there was conflict in a family, it meant that the family was going to fall apart. And I don't think I had it in me to start over again, because I'm adopted. And then my adopted family got divorced when I was 13. And so what I knew was that people, when they find conflict in their life, give people away. And then I knew that when people had conflict, some they didn't work it out. They just ran in different directions. And so if people had conflict, it didn't matter what level of conflict I, when I was younger, I felt like that was going to be the dissolution of our knowing of each other. And it panicked me. And then I would work very, very hard, usually in ways that weren't valuable to try to calm everybody down and keep them together. And you know what I've learned since then? That my adoption, and my parents divorce, have literally nothing to do with what may or may not happen in my life. It's meaningless. Yeah, it's the way my wife and I handle conflict isn't the way my parents did. So I was literally worried about nothing. And all I had to do was let go of it. You give it voice. This is gonna sound very Hocus Pocus, he Okay, Carly. But I have a lot of, okay, you give it voice, which means you say it out loud. And then you stop worrying about it. And that's it. Right. By the way. Do you know what else? I'm gonna sound crazy for a second? You ever read a book called? Mind Over back pain? No, okay. Well, I think it's possible that if you four or five times a day, quietly in your mind, not out loud, told yourself. I'm a young healthy person. And there is nothing wrong with my back. It would stop hurting.

Carlie 36:30
Okay, like the power of your brain? can control

Scott Benner 36:33
that? Yes. Here's what if you go to work, you have a job, right? Yeah, you go to work and you do whatever, you're skinning something or I don't know, extracting oil from something or whatever you do. And, and you have a terrible day, bad day. And you come home at the end of the day with a headache, right? Do you think your brain is broken? No. Okay, when you have a terrible day and you come home and your back hurts? Do you think you're old and your back hurts and you have problems? Maybe now, now we'll move on to your next and third and last irrational fear. What does it mean told you my adoption thing?

Carlie 37:18
Right. What I had to think about the first thing I think most of my irrational fears are just like things that I know are not going to happen. But they seem so real. I think I think just like, do like I'm afraid that like, there's gonna be a terrorist attack where I live in the hole. It's just Bob. That's what I fear do like I fear, like, really traumatic events happening. And like I can, like, visualize it in my head happening. Like a terrorist attack. I live in a place. That's like, without giving away my location. I guess I live in a place that's like, a major trading area, I guess for both countries. So it's like a pretty I don't know, I don't know what I'm saying. Anyway, I just upgraded here.

Scott Benner 38:04
Okay, no, no, no, no, I understand. So you think that whatever the worst thing that could happen is is the thing you're worried about?

Carlie 38:12
Exactly. Yeah. The worst thing?

Scott Benner 38:15
I'm sorry. I mean, to cut you off. Do you watch or consume the news regularly?

Carlie 38:19
I did. Especially I try not to No, no, that's a lie. I still do. I'm always looking at me.

Scott Benner 38:26
Listen to me. Yeah. Do you listen to this podcast? Oh, yeah. Have I been helpful to you in any part of your life? Absolutely. Okay. I'm going to be helpful to you again. Okay. Never watched the news. Or read the news again in your life. Okay, man, I tell you why. Yes, you can handle it. I think it's not for you. No, it's okay. Not a judgment. Okay. Yeah. Not a judgment. It's not for you. Now. Also, we could dig into it if you want to, but the news is stilted to make you feel the exact way you feel so that you will what? Watch More news.

Carlie 39:04
Oh, watch more. Yeah, that's true. It's addicting. Makes you want to read more?

Scott Benner 39:08
Because you're why you're worried. So you want to get the information you need to stop yourself from being blown up by a terrorist. I understand you like a book does. It's like a book I've read 1000 times. Now. You're not allowed to watch the news anymore. I don't want you reading the news. If you have a news app on your phone, I want you to delete it. Okay, okay. Never listened to CNN, MSNBC, Fox News. Any of those. Please avoid those like the plague. You are allowed to read? NPR? Once a week. Okay, but only two stories. And then you're done and one of them has to be about music. Okay, okay. I want you to Okay, that's it. No more news. It's not good for you. It's okay. No shame.

Carlie 39:53
I'm just, I'm realizing like how toxic like I got when I go to work. Like I log in my computer and I'm like news.google.com What the horrible things are happening in the world right now? I want to read about him.

Scott Benner 40:05
You're feeding your own. You're, it's like you it's fear porn. Yeah. Oh my god. You want to be upset? It's your natural. It's your natural state. You're trying to keep this level of a that you have going like that. Like I bet you vibrate in person. I bet if I got near you, I'd be like, God damn, that girl is vibrating. Do you vibrate? Do you

Carlie 40:34
feel it? I feel like I've been thinking about how to like God. When I listen back on this I'm gonna sound like a nutcase

Scott Benner 40:41
like a nutcase. You're gonna sound like a person who grew up with an anxious mother, who went into a world with a ton of information that you keep hearing. And let me tell you, and it reinforces it for you. I'm going to tell you something right now. The world is a safer place right now than it was 50 years ago. It is a safer place than it was 200 years ago. It is a safer place than it was 1000 years ago. Okay, gang, this con is not going to come through Ontario, and kill every man and rape every woman and kill every child. He's not going to do that again. It's not going to happen. Okay, it is safer now than it was then. Yeah, your house has locks, right? Yep. Got her police departments that deter people from doing things. You're married to a guy I'm sure he's a big strapping Canadian man. He could probably pick up an otter with one hand and beat a man to death with it. Right. Do you feel safe when you're with him? Yes. Great. Yeah, fine. Unless something crazy to you. If you're walking down the street one day, and someone grabs you and pulls you into a truck and kills you. There's not a ton that you can do about that. No, yep. Right. Bad luck, okay. But we don't give away every day of our life, on the off chance that someone's going to snatch you up. Okay, we don't we don't do that. We don't give away our life like that. Another thing here, if I can make a parallel for you, we don't give away days of our blood sugar. Out of fear either. Okay, so you check your blood sugar, because knowing is better than not knowing. Yeah, about your diabetes, knowing is better than not knowing about the news. Not knowing is better than knowing. Especially for you right now. Yep. Because you told me in your note, I'm going to I better get my s together. For my I'm so lazy. I didn't want to edit that out. So I said as I I better get my act together for myself. My future husband, my future unborn children. Okay. You do not want 25 years from now, for your kid to be on whatever the equivalent is of a podcast and say, my mom is the reason I feel like this.

Carlie 43:08
Oh, god. Yeah, I gotta end it right now.

Scott Benner 43:11
Cut the string right now break the circle. You can do it. I don't act like my dad acted. But I did when I was younger. And I stopped myself. Okay, you could do this. This is not a problem. I would, I would say therapy. But you're in Canada. And I don't know what like a shaman you're gonna meet? You know what I mean? Like, you gotta get a real Yeah, yeah. Somebody who really understands the business over here, Erica, on this podcast. She's a family therapist, you should listen to her. By the way. I don't know if I've come to that episode yet. She's, she's in California. So you, I just think California, she's encountered. What the hell, she's in California. So you can't use her. But you got to find a good person to talk to. And to get rid of all this, like, pretend you have a lot of pretend in your life that doesn't exist and you keep feeding it. All right. And I've caught you just the time 25 I've saved your life just now. I can't thank you enough for taking a victory lap right now with my hand waving to the people. And I'm in a room by myself. And I actually am waving my hand. Like in victory. That's awesome. Yeah. Because we met today, and I'm happy about that. Oh, thank you. Now tell me why you shouldn't be worried about a mass shooting.

Carlie 44:30
Because the odds of that happening are slim to none. Because I live in Canada where guns aren't accessible. Either accessible, I should say. You know, and if it does happen, then it does happen and there's nothing I can do about it.

Scott Benner 44:44
So here's another thing for you. This might be controversial for some people. There aren't that many mass shootings. You hear about every one of them. They're terrible. So they sound horrible. And the media like you know, keeps feeding them to you. But did you know notice that during COVID, you didn't hear about one person shooting somebody. Yeah. Why was that? Come on? Why not? Because I don't know. COVID they had COVID to make you upset with. Right. Okay, not that COVID wasn't bad, not saying COVID wasn't bad. They already have a thing to get you ginned up to get you to come back the next day to get you to click on the Next link to keep you worried and concerned to paying attention. They didn't need to tell you about the shootings because they had COVID. Right, right. You understand what I'm saying?

Carlie 45:33
Yep. Just gotta stop watching the news. If you're bad at

Scott Benner 45:37
watching news, Carly. Yeah, most people are. Yeah, yeah. Because the last two. Yeah, of course, this was the worst time I watched my son told my wife for three months in a row. Please stop watching the news. Please stop watching this. So she finally stopped and she then I watched her thank him for telling you that. That's great. All right. Now, are you worried about dying in a car accident?

Carlie 46:04
Not so much. Like no.

Scott Benner 46:07
Isn't that fascinating?

Carlie 46:09
Yeah, it's, it's a crazy, crazy stuff. I'm

Scott Benner 46:13
scared of gonna come over here and edit this podcast for me now. I'm sorry. If you were going to curse I would have just cursed. Oh, I'm really sorry.

Carlie 46:21
I love where I started this. I was like, Don't swear. Do not worry. I know you can bleep it out. But I don't want to make your life difficult

Scott Benner 46:31
by now you first I curse we're gonna curse. Alright. Alright, let's go back to your list. Yes, kidney disease? Do you have kidney disease?

Go find your blood glucose meter? Did you choose it? Or Did somebody give it to you? Does it work really well? Or would you have no way of knowing? You just trust it? Because it's the one you have. And it's the one you are given? What do you trust it because you did some research and you found out this is a really accurate meter. And if you did, then good for you. I think that's great. But if you find yourself in that other category of someone who was just handed a meter, then I really believe that you owe it to yourself to check out the Contour Next One blood glucose meter, you can do that, of course, at contour next one.com forward slash juicebox. When you get to this webpage, it's the internet. You know what I'm talking about. You'll see pictures and words what you expect from a web page. But this one has more there's tabs at the top and everything you want to know about the Contour. Next One is there talks about the pricing, the accuracy, everything that's important that let's be honest, you should have checked into before you just took that other meter. But you didn't Fair's fair, but now you know, contour next one.com forward slash juicebox Second Chance test strips. You make a little blood drop, and it doesn't need a lot of blood. But say you make a little blood drops little to spell touched on the Strip. Oh, it's not enough. Get out a little more blood a little squeeze, you put on some more. And that's where I am BB but works now. Oh does not influence the accuracy the strip, you won't waste test strips. If you don't get it right the first time, it's got second chance testing. It's a big deal. The meter also fits well on your hand or your purse or the bag you carry your supplies and it's got a bright light for nighttime viewing. And the screen is simple and easy to look at. There's no complicated markings everywhere. Just the number. Boom, there it is nice and easy to read. And if you want, you can connect the meter to an app on your phone to get even more information and helpful little tidbits contour next one.com forward slash juice box. Go take a look. Now what if you're thinking about getting a Dexcom G six continuous glucose monitor? Well, that's a good idea. Because you're going to see the speed and direction of your blood sugar in real time. I will pull up my daughter's right now. I have an iPhone I have swiped up. The phone is open because it recognizes my face. It's like a little Scott. And what's your blood sugar 87 How's that sound? Just like that I know Arden's blood sugar is 87 dexcom.com forward slash juice box, you may be eligible for a free 10 day trial of the Dexcom G six head to my link to find out dexcom.com forward slash juice box. But all in all, if you want to see blood sugars in real time, this is if you're using insulin right doesn't matter. I mean, type one, type two, using insulin if you need to see your blood sugar, the speed and direction it's moving and the Dexcom will show you that not just 87 but my daughter's blood sugar is 87 and stable. If it was rising or falling, there'd be an arrow to indicate that and that arrow would tell me how fast she was. moving. This is the bestest. It's what you need. Not only is it great for safety and health, helps you make good decisions about bolusing and food, but it also it also teaches you now these are my, my experiences and yours may vary. But I learned so much by watching what the blood sugar does, how the insulin impacts it, how the food impacts it. These things are, they're paramount to me, and how I manage insulin for my daughter. And I think you would find them incredibly valuable to dexcom.com forward slash juicebox links in the show notes. Links at juicebox podcast.com. To these and all the sponsors. Thank you so much for listening to the ads. Now let me get you back to Carly.

Carlie 50:49
Right, I'm gonna pull

Scott Benner 50:50
out oh, wait, hold on the wrong thing. That was the lady from yesterday. I don't laughing I'm not laughing about kidney disease. I'm working on the wrong thing. Sorry, Jesus Christ. Okay. Well, you said that switching from your pediatric endo to your adult endo caused you a lot of consternation. So that I hear that from a lot of people. I want to know more about that.

Carlie 51:17
Yeah, I I think I have a little note here. Yeah. Okay. I don't think it's talked about enough in general, like I have heard people talk about it, but not a lot. Because that experience for me was like, the worst. And I don't know if other people can relate to me, but like when I had to, like, obviously, I was six when I met with the care team there. And like, most of the same people were with me, like up until I turned 18. And like when I had to leave the pediatric care and go to the adult clinic, I felt like someone died. Like I felt like I lost a family member. And like, I was just mourning that like that. I didn't have that support anymore. Because yeah, like, like, I remember, like my last appointment at the pediatric clinic. Like my dad had come with me actually, cuz I think he wanted to come because it was my last. And there was this nurse there who like I love She's so nice. And she walked us down to the adult clinic. And like, I cried, she cried, like my dad got teary. Like, it felt like, she was like, passing me along to another part of like, my life. But then like, it just wasn't a very, like welcoming. I don't know, like, the endocrinologist that I was getting, like a sock like assigned to or became a patient of like, just very cold, like, didn't didn't seem to care in the way that like I had been cared for for so long. So

Scott Benner 52:35
I got it. Hold on. Now I'm gonna ask questions. Yeah, what was your agency while you were seeing your pediatric endocrinologist?

Carlie 52:42
I wish I had a list of 20. But like, most of the majority of the time when I was in pediatric care, my own fee was never any higher than like seven.

Scott Benner 52:51
Okay. And why did you? Did you live with this woman? Why did you care so much to me? We left my daughter's endo appointment the other day. And I got I hope they don't listen to this because I don't want this to feel bad. And she said to me, and I'm quoting now, why do we come here?

Carlie 53:09
Pardon? Yeah.

Scott Benner 53:15
And I said, Well, when we leave, we get waffles. So that's all right. You know? Yeah, we go for waffles after

Carlie 53:22
Endo. Oh, you guys do? They give you waffles.

Scott Benner 53:26
endocrinologists was giving.

Carlie 53:29
Maybe like sugar free, you

Scott Benner 53:31
know, we leave that place. And we roll up the street that disjoint and we get chicken and waffles. And we use real syrup and a ton of butter. And we eat wild rice together. And we don't let it spike. And then we laugh and we leave. And so she said Why do we Why do we come here? And so if you if you diagnose that, that idea, we know how to take care of her diabetes, right? We don't need a check in for someone to tell us to do a good job. I don't need a pep talk from somebody. I'm sure I'm sure some people do. I'm not denigrating that. I'm just saying we don't need that. I'm wondering why do you need it? Like why did you what was so important about that connection to you? And this person?

Carlie 54:16
I think it was like just more so like, I don't know if it was like emotional support. Or if it was more like, like, Oh, I just like they feel like family because I've been seeing them since I was six. So like I mean, I guess it's not that's not causation for everybody, you already know was like what, two or three when she was diagnosed

Scott Benner 54:34
or bossing these people for a very, very long time. Like I could write with my eyes closed.

Carlie 54:41
Yeah, I don't know what it was. Maybe it was just like that realization like, like after I left like I'm like, oh, like, Oh, crap. I'm an adult now and I have to take care of myself. And it's like, it just got more real. Like I didn't have them as a crutch.

Scott Benner 54:56
Did you do that? Or Did somebody tell that to you? Did your mom say to you? Now you're an adult? You're gonna have to take care of this. Was there ever? Did you ever get those conversations from her?

Carlie 55:08
No, I don't think so I think because she, my parents both kind of like, I don't know, they did they read the paper, like when they weren't as involved in my care, they would be like, are you taking care of yourself? Are you checking everything you are you go? And I'm like, Yes, I am. And I get like a noise.

Scott Benner 55:27
Sorry, were you lying when you said that? Yes, I

Carlie 55:30
was. Because if I talked about anytime, like anytime I was asked, How are you doing? Like or like, like, are you? I'm like, like, Oh, I'm great. Everything's fine. Because I didn't if I were to get into it, I would just cry. Like, I would cry. And I don't know how to like, but I'm telling you, like, if I had an I had a therapist, who specialized in like people with diabetes, I think I would have been okay. Like, anytime I went to an endocrinologist, like my adult one on one I would seem before I suppose. There was just a nurse there, who like, was really into the scare tactic method, which I am not a fan of. Personally, it doesn't work on me. It just makes me not want to come back to see you. Which then furthermore, makes me not take care of myself as well. I have cried so many times because of her. Like in the office. Well, last time I saw her, she was like, Oh, stop crying. She's gonna think I like made you upset. I'm like, Yeah, because we did. She was telling me a story about her sister who died from complications of diabetes. And like the feet, two feet had to be cut off, and the kidneys shut down and all this stuff. And I'm like, You're not helping me. You're just freaking me out. And I already know these things anyways. I mean, like,

Scott Benner 56:41
I have an idea for you. What if I made a fake news program that just told you to take care of yourself? Where you were somebody would shoot you while you're walking in history? That would probably make you do?

Carlie 56:56
Yeah, definitely. More, would it

Scott Benner 56:59
not? Or would it just make you more afraid?

Carlie 57:03
No, I think a complex one brain is complex.

Scott Benner 57:08
I don't think you're that complex. But I listen, you went from a 10 a one C to A six a one C in a short amount of time, which tells me you know how to take care of yourself. Yeah, okay. Yeah. So that's not the problem. The problem is, is that you just out of anxiety, which we call it now. But the truth is, you just don't want to hear bad news. Unless you feed it to yourself, then you're thrilled to have it. So which is odd? I don't know why you couldn't. Go ahead.

Carlie 57:38
That's exactly it sounds like you've literally just described who I am.

Scott Benner 57:42
Yeah, well, I've been talking to you for an hour. I got it figured out already. It's not that hard. No. Basically the same people. True. Yeah. It's very simple to figure people out. I don't want to like, you know, not putting down therapy. But like, all you gotta do is talk to people for a while to figure out how they think. And then say the things that don't make sense to them in a way that doesn't make them upset, and then they understand it, and then it's kind of over. So. Okay, so by the way, I'm not a therapist, I'm not trained at all. You recognize I didn't go to college, right? No, I did not be listening to me. This is a massive mistake on your part. But the but listen, that was a joke. You can tell the difference, right? Yeah, of course. I didn't go to college. I wasn't joking about that. That I don't think it's a mistake for you to come here. So isn't it interesting, though, that testing your blood sugar and getting bad news? made you feel like a failure? Is that right? Yeah. But listening to the news and getting scared about something. That's not you. So you don't feel like a failure. But you love that fear porn feedback is so if I guarantee you, if I made the management of your diabetes in your mind someone else's responsibility, you would actually enjoy seeing it go poorly. So tell me how we can make it so that when you see the result, the result feels like good information that you'll use to make a good decision next time and not like failure. And how we can stop desiring to feel scared. Tell me what we can do for you to do that. And when I say I'm clearly talking about you, so can you do to put yourself in that position? Feedback is good, right. You have a CGM. Now

Carlie 59:42
Yeah, I have the Dexcom and I have an omni pod now to mainly because of your like this podcast that influenced me to get both of them. So let

Scott Benner 59:50
me stop right here in this moment. Say hey, Dex comment on the pod when I tell you the price is going up for the ads. You just listened to Carly and you go okay, cool. I mean, how much do you send those people a fair amount? Right? They can give me a little Oh, thank Carly. Okay. All right, by the way, really great partners. And I'm just joking. Nobody fights with me about stuff like that. I'm teasing. But I

Carlie 1:00:15
think it's just funny. I think it's funny, like how many people that you interview on here or talking to you on here? I'd say like, oh, I'm, I'm on it on the pot in the Dexcom. And like, and then you're like, I swear to God, I didn't tell him to say that.

Scott Benner 1:00:27
I didn't tell you to say, No, I

Carlie 1:00:29
know. No, you didn't. But I just think it's funny because I'm like, Well, I mean, they're pretty great.

Scott Benner 1:00:35
Let's be clear, they're great devices. I'm just, I just, I read ads for them. I don't even read ads, I make them up on the spot, you know, that I do. The other night, I sat down with four episodes that were edited. So there I burped, I apologize. So they're all like, Oh, you didn't hear that I didn't bourbon. So they're all edited up for sound. And they're in chunks, right, there's a gap in the front for me to put the open in. Then there's the first part of the podcast, there's a small gap for me to put the ads, there's the rest of the podcast, there's a gap at the end, and I fill it in during editing. But I sit down and do like four episodes at a time. So I make up on the spot. The ads, I don't have anything written down specifically, once in a while there's reasons to read exact verbiage I make sure I do that. And in like an hour, I record all the opens. So the bumpers and the ads for four shows. And by the time it's over, my brain is spinning in a circle.

Carlie 1:01:36
I can imagine,

Scott Benner 1:01:37
sometimes you'll hear me say like, in the middle of the ad, I'll just like I'll lose it. And sometimes I just leave it in because it's like 11 o'clock at night and I'm like, whatever. I think that point is this. You're okay. But you don't know it for some reason.

Carlie 1:01:57
Probably because I'm so comfortable with not scared of something and not being okay that like now that I actually am okay with everything like yeah, okay, so just relax. Alright,

Scott Benner 1:02:12
I know other people like this. They love being upset. Now, they don't really love it, like, consciously. It's just their comfort zone yelling and angry and at odds with one of the people, they always there's always a person in the group that has to be doing something wrong. I'm making quotes with my fingers, right? So the group always needs to be mad at one person in the group. And then that'll shift. And then the person who was being mad at like people were mad at, they get to be part of the next group that gets mad at somebody else. This is their default happy place. This this group of it's how they love to live. The more upset they are, the more comfortable they are. I think you're comfortable when you're anxious. Not because you're not comfortable with the anxiety. It's just it's a it's a unknown quantity to you. It's a feeling that is familiar. It probably even makes you feel close to your mom in some weird way.

Carlie 1:03:15
Might What am I? Oh my god, this is so toxic. Like I'm like, I gotta I gotta like see her and I'm like, did you hear about what happened? Like this horrible thing happened and you hear about it? The guy saw it and when we talk about it, like, Oh, this is bad. Like this should not be happening.

Scott Benner 1:03:30
Are you worried? Because then cameras in your home and I can see your life?

Carlie 1:03:35
No wonder until you

Scott Benner 1:03:39
are you not worried about that?

Carlie 1:03:41
No, I have I have a little flighty things on my webcam.

Scott Benner 1:03:48
I'm not using your cameras. Carly. I've put my own cameras in.

Carlie 1:03:51
Oh, no, I'm not like paranoid. No, that's

Scott Benner 1:03:56
back just in case there are any real like severe, like mental illness. Listening to the show. I don't listen to people's I can't get cameras in your house. I was making a bigger point to Carly that I said something about her interpersonal relationship with her mother that I have no way of knowing about that. I was 1,000,000% right about so. You guys. You guys fear porn each other? Yeah. Oh, yeah. That sounds weird. But yeah, it's true. Carly Oh, hold on a second. Should I call this episode Carly fear porn or mom? Oh, definitely. I'm not gonna do. Oh my god. No, I might call this one. Scott was right. Again. There'll be a comma between right and again. We're three Oh, yeah. Who knows? Anyway? No, no, no. Is this helping you at all?

Carlie 1:04:44
It is. I know. I know. You're not a therapist, but I feel like I've like I've like, learned more about myself than I did before. I started to like things that I knew were like that is who I am in how I operate. But like I've never like actually like Have someone like, say it out loud to me? Or like I've never heard it be pulled. I just thought this is who I am.

Scott Benner 1:05:07
I don't think you have to be like this at all. As a matter of fact, you seem like a very nice happy person.

Carlie 1:05:13
I am and that's the funny part is that I don't think a lot of people who know me would think that I have all this like Doom in my brain, like, because I'm very, like, very bubbly and I'm happy and I'm nice. Like, oh, my friend. Like if I send this none of my friends are gonna believe like I don't think they're gonna know like these really dark dark years that I would meet any someone like my really close friends of all but like if I don't know, like, I want to destroy this like I'm on home. I like on Facebook and stuff after I'm gonna be like, what?

Scott Benner 1:05:46
And if you do, what are you gonna do if they come back? And they're like, oh, Carly, we know this about you?

Carlie 1:05:52
Then I'll be like, Wow, I guess I'm gonna fly.

Scott Benner 1:05:57
Is the bubbly to be sly. Are you trying to mask the anxiety?

Carlie 1:06:02
Yeah, probably. I think maybe that's my, my way of trying to make people around me think I'm good.

Scott Benner 1:06:09
So I'm worried that people will find out that you're an onset unsettled?

Carlie 1:06:15
Yeah, like they're gonna be like, Why? Why are you? Why are you letting that consume your brain? Like, that's crazy.

Scott Benner 1:06:22
Why would you tell me all this stuff and not your friends?

Carlie 1:06:26
I do tell my friend. Well, some of my friends know. Like, I've talked about it with some of my friend who I feel like I can like

Scott Benner 1:06:33
they weren't helpful because they're 25. Two, they don't know anything, right?

Carlie 1:06:38
Oh, yeah. I don't know.

Scott Benner 1:06:40
I trust me. I know. It's fine. I was 25. Wants to I knew for things. Right? Yeah. So it takes a while to learn things. That's why we got to keep old people alive.

Carlie 1:06:51
They know that they know the thing.

Scott Benner 1:06:53
They know that. Old people know things. Oh, people

Carlie 1:06:56
know. I was just thinking that. I was like that can be a good title.

Scott Benner 1:07:00
Old people know things that might be a good title. But that's not the point. The point is this. I don't even think you're anxious. I think you're just you're, you're like caught in a cycle. I think if you just jump out of the like, if you just jump off the merry go round. It'll keep going without you and you can walk away from it.

Carlie 1:07:20
I think you're right. Yeah.

Scott Benner 1:07:22
I don't honestly think this is a heavy lift for you. You're not? I don't I don't know that any of the technical terms I'm about to use, I might get these words wrong. But you're not clinically. Something, you're socially something.

Carlie 1:07:39
I've been influenced to be this way. But I'm not actually this way. I really

Scott Benner 1:07:43
think that might be true. of more people than just you, by the way, but about you specifically. Because you see it like Facebook's an interesting place, right? Where people like they want to be upset. And then they want to make other people upset. I expect they want everyone to feel upset. So everyone feels the same. You know, then they mask it with things like I know the right way to live and you don't know and you're ruining the world. Meanwhile, no one's ruining the world with their decisions. Like it just it's not working that way. But everybody feels that way. And then they have to attach this incredible certainty to, to what it is they're denigrating. Like if this person does x, then y will definitely happen. I have to stop them. They make themselves powerful. And they get this confusion that like social media means they have power. I want to tell you something, Carly, I'm be serious for a second. I have a certain amount of social media sway, okay. And I am powerless on social media. And I tell you that to say that if if you if you are a person with a Facebook page, and 90 or 300 friends, and you think that putting your thoughts on that page are going to change something in the world, you're so wrong. It's incredible. There's something in advertising called the rule of 10s. So you have to reach 1000 people to get 100 people to even consider doing something that so that 10 of them will click so that one of them will follow through. You're not influencing anybody. Okay. Now what you do is you make people upset. You make people think you're a problem. Then you make division. And then people love the division. They love to be on a team. Right? I'm Team vaccine your team not vaccine I'm Team Read your team blue I'm Team packers your team Vikings doesn't matter. Like people want to be on a team they want to like they want to fight for like just this and and they want to and they want to be on the winning side. That's what happens next. That's the real fear of being on a team is that you want your team to win no matter what. And for some reason you Your team is being upset. Right? You want to be upset? And you need to be upset because that's winning. Does that make sense?

Carlie 1:10:10
Yeah, it does. Yeah. Okay, absolutely.

Scott Benner 1:10:12
Now, what are we going to do now that we have all this free time? We don't have to. We don't have to sit around with mom yelling about did you hear what happened? And you don't have to be on the news going, oh my god, this is the next thing I need to be worried about. Like, like now that none of that's happening for you. What are you going to do with all your free time?

Carlie 1:10:31
I don't know. Like, I'm gonna be happy. Like, I'm going to be happy.

Scott Benner 1:10:35
I would be happy in a piece. Yeah, good thing, and you'll probably be able to take much better care of yourself without worrying about it. Yeah, right. Yeah, you're good at it already. There's nothing to worry about. Because you, you know, good. Sorry. Go ahead. No, no, I want you to go,

Carlie 1:10:51
Oh, okay. I wasn't gonna say it like what the best come to know like having, like, no choice, but to look at all this information. It makes it less scary, if that makes sense. Like, I see it all in front of me. And I'm like, oh, that's scary. Like, it's just like, information, it's gonna benefit me. You know?

Scott Benner 1:11:09
Yeah. Like you say, you ever struggle with over eating on low blood sugars?

Carlie 1:11:15
I've been working on since I've emailed you about it. Like, I think when I was listening to your podcast to like I was I remember, like, you would say, like, you know, like, you don't need to eat 15 grams of carbs to fix a low, like, you might only need like five carbs to bring you back up, you know? Like, because you told your whole life 15 grams of carbs when you're low. But like, not every low needs 15 cards. I've been kind of taking that into account, too.

Scott Benner 1:11:40
Oh, that's interesting. So you had a fear based on some bad input? And then it took one person to tell you, maybe don't worry about that. And then you went, alright, I won't worry about that. And now that's not a problem anymore.

Carlie 1:11:57
Yeah, like so instead of eating the whole fruit snack pack, I'll eat like, two or three little fruit. Things? Yeah.

Scott Benner 1:12:05
Yeah, there's a there's a certain if you're, if you're fighting a low, yeah, there's a certain amount of carbs that will fix the low and stop you from going higher. And there's a certain amount of carbs that won't fix the low and there's a certain amount of carbs that will fix the low and then all of a sudden, it's not, you're not managing a low anymore, you're now eating and eating needs insulin. And to be able to figure out the difference between the three of those takes a little bit of effort. But once you get it figured out, then you're good. It's not always 15 grams. 15 grams for 15 minutes and 15 minutes is something that was told to people back before there were CGM back before there was good. Even meat or technology. They were literally saying if you're getting low if you feel dizzy, oh my god, eat a bunch of foods so you don't die. Yeah, but that's not the world that most people live in anymore. And you don't live in that world. But you're still acting like you do.

Carlie 1:13:02
Yeah, because like anytime I felt like, like, I like I said, I've been working on it. But like when I would feel low, especially if it was like an overnight low. Oh, God, it was like a reason to like binge like, I would just like, I would eat so many carbs because I felt so crappy and just keep up. I'm laughing because how you started at you're like, I'm just gonna say s and then here I am. And I apologize. Um yeah, like I would, it would be like a reason to just, like eat a bunch of stuff at once. And then like, when I wasn't taking care of myself, and not like I would if I went low in the middle of the night, and whose season day and it wasn't real low because I never checked. I just felt low, which probably meant I was in range. I'm not lying. Like what like look like for a while like, I know you've talked about this in the podcast, too. But like, like when I started to like make a change in my health, like my diabetes like a low. So I started feeling low when I was completely enraged. Because my body was like coming off of that, like, oh, like, you're not high, but you're not low but you feel low. So that was hard to kind of push through. But it did go away after like a couple of weeks.

Scott Benner 1:14:13
Work. You mentioned earlier you said you managed on how you felt which I always Arden's like I feel fine. I was like garden if how you felt was important than Dexcom wouldn't exist. So why don't we test and make sure why don't we look at your CGM make sure that's right. And there are way too many people out there doing that. Like oh, I just I because in the beginning they probably feel crappy when they're high and then think they understand it or they feel dizzy when they're low and then by the way, then your body gets used to being high you don't feel it anymore. And some people some people have like a low on awareness too.

Carlie 1:14:49
Yeah, I'm glad that I don't have low in earnest but I still do feel lows and I'll wake up in the middle of the night from below but like, oh my god, like, I just think about like how when Like when I was doing that, like being like, I feel fine. I was probably high. And like I was, I would eat. Yeah. And I was like, I'm fine

Scott Benner 1:15:10
excuse to eat a bunch of food and not doing anything about it, which is what you which, which was really your happy place, which was not having to worry about your diabetes.

Carlie 1:15:19
Exactly like that just being like, yeah, just not caring in the moment.

Scott Benner 1:15:24
We're gonna walk you're happy place you being healthy. Okay. Okay. Let me ask you a question about this boy that you're married? Yeah. Do you tell him all this does he know about this?

Carlie 1:15:37
Trying to extend like, he's, he's, he was aware, like, we'd been dating like, three years before, like, we got married. And like, I think, like, for the majority of our, like, when I was dating him, like, I wasn't like, diabetes isn't important to me until this past year. And I think you've seen like, a change too. And like, you've watched me, like put a lot more effort into it. He's always been involved in it. Like, I like talking to him about it. And he actually kind of crazy he, he, he is the cleanest person. I'm not joking. Like, he's so clean and organized. So like his favorite thing to do, which is my least favorite thing to do is like making sure that all my supplies are like, organized. Like, my kit is stocked. And like everything is good, like, my prescriptions are filled. Everything's fine. I've never been good at that. But he loves doing that.

Scott Benner 1:16:28
You want me to ask him what his parents did to him.

Carlie 1:16:33
Already know what his parents did to him. His parents are very much the same, right? organized and clean and stuff. So I'm definitely how he would understand like, oh, no, no, that's fine. Oh, nothing at all. It works for us too. Because you laughing because like, now we have a house together. And he's like, you know, it's ever messy in here. It's great. Because no one will ever blame me. It'll, they'll know what to you. And I'm like, You're right. Because he knows he's clean. But yeah, he

Scott Benner 1:16:59
I don't want you living a lie with this boy. Okay, so and, and I think now if you go back to him and tell him about all this anxiety stuff, he's gonna feel like maybe he was sold what they call a bill of goods. So we don't want him to go. We don't want you to think they want him to feel like that. So we'll just we'll just make this stuff go away. And it's like it never happened.

Carlie 1:17:20
Yeah, you know what's funny, too, is that my dad always joked about that when he married my mom. He had no idea how until after they got married.

Scott Benner 1:17:30
That's, you understand that? Right? Oh, yeah, absolutely. And I'm sure your debt boy is lying to you about something right now too. So what that is, okay, I get him to fix it. But hopefully he's not outside like killing small animals with sticks or something weird like that. Right?

Carlie 1:17:48
Oh, God, I hope you're getting a dog too.

Scott Benner 1:17:53
Wouldn't it be being a mass murderer? You were killed shooting that I'm gonna look at him like just not he is not going to enact a mass shooting and make you one of the victims. I was just teasing you because of everything we talked about. He'll probably push you in the ocean where you'll be killed by a shark. So there we go. Your land. Right, like in the middle that that big ice?

Carlie 1:18:27
I got it. Yeah, we don't have any oceans near us. We have lost the

Scott Benner 1:18:31
weight. I received the ocean up in person.

Carlie 1:18:35
I have I've only I've only been in the ocean a couple of times. And one of the times is gonna be on a vacation to South Carolina with my mom was there and she was petrified of letting us go past our like, knees. Because I'm sure

Scott Benner 1:18:51
sounds like a big fun time to your mom. Gonna leave my wife right now. I'm gonna try to steal your mom away from your dad so I can have a big party. You're terrific, Carly. I hope you know anything that we talked about that you wish we would have?

Carlie 1:19:10
No, I just wanted to like thank you for the podcast. Because I I love what I'm so glad I discovered it when I did too. Because it was like obviously the email that I sent you I think was in January or February and that was like right at the beginning of when I started to kind of like really dedicate myself and know and like tell myself this is the last time I'm gonna like, you know what I mean? Like I'm not gonna fall out of this path again, and I haven't yet so it's been going good. But yeah, your podcast is great. I listened to it every morning on my way to work and at my desk sometimes and yeah, I'm I think I told you the email I started looking because I'm like from the newest going down but then I realized that's not really the best way to do it as long as I've been listening from the first on so I mean like the three hundreds no

Scott Benner 1:19:53
better as you're going

Carlie 1:19:56
to listen to, especially the audio quality like you do get that better at it like I'm like, wow, this is great. This sounds

Scott Benner 1:20:02
Yeah, I got it figured out the audio better and I think I'm better at it in general. But yeah, yeah, the audio bothers me. I wish I would have known. I wish I would have no know what to do with it. Not

Unknown Speaker 1:20:15
that bad.

Scott Benner 1:20:16
I know. It's not that bad. No, I understand. But it's so crystal clear now, right? Oh, yeah. That's great. So I wish I knew that back then. That's what am I?

Carlie 1:20:26
Oh, is it Yeah, but don't don't regret it. But

Scott Benner 1:20:28
do you know, Carly, I never think about it.

Carlie 1:20:32
You shouldn't. I love I love honestly, I don't know why I brought that up. I really wanted to tell you that. I love the podcast. And yeah, and you're great.

Scott Benner 1:20:42
Well, I'm glad that it's helped me. I really don't i i hope that everybody gets something out of it. Who tries it? I didn't ask you another question again that I've asked already in the past. No weed for you. Oh, I do. Yeah.

Carlie 1:21:00
Okay. I think I think maybe using it more often would be

Scott Benner 1:21:04
because you're going at like 200 miles an hour in your brain?

Carlie 1:21:08
Yeah. All the time.

Scott Benner 1:21:10
Do you slow down with the weed?

Carlie 1:21:12
Yes, I do. Okay.

Scott Benner 1:21:15
Well, I would like I don't think you should be doing drugs. Okay. But no, might try those breathing things more often. The big breath in, hold it blow it out. It's very helpful. It just, it's centering I do it. It's very centering kind of slowed. You're kind of slows your heart down a little bit. Because I thought when we started talking, that you were speaking this quickly, because you were nervous, but it never stopped. Oh, no. You speak like 1000. Like I'm I'm slowing myself down to balance you out.

Carlie 1:21:51
I like reading listening to my

Scott Benner 1:21:54
great. Oh, Carly, stop for a second. You don't misunderstand what a podcast is. Okay. Hopefully you got something out of this? Absolutely. If you didn't, it doesn't matter to me. Because everyone who hears it is going to get something out of you're going to have done a really nice thing for people. Because the problem is paramount right now in society. Yeah, yeah. You, this is probably the longest you've gone without looking at your phone in five years.

Carlie 1:22:28
I feel outed right now.

Scott Benner 1:22:31
Right? My wife asked me this morning about my job. She's like, do you ever, like dread making the podcast and I said, there are times when I have to edit the show that I think I don't want to do this. Because it's I have to go back and read Listen, on a different level. Like, I'm not really listening for what we're saying. I'm listening for noise and pauses and gaps. And I'm like, I'm cleaning it up, right. And I'm setting up the file to do what I told you about earlier to put the bumpers on the etc. It's the it's the background stuff to it. I don't I don't hate it. I just there are some times I'm like this, it's kind of tedious for me. And she said, What about interviewing people? And I said, Oh, no, that's the best part of my life. Like so. Like, like, what I so enjoyed our conversation. I really did.

Carlie 1:23:22
I am God, because I was anxious about that, too. Before we started, I'm like, I don't even know why I'm going on here. Like, what am I going to talk about? Like, I'm not interesting. I'm just another person.

Scott Benner 1:23:32
You're maybe interesting. Oh. You're very interesting. For two reasons. Here. I'm going to be honest with you, okay. People who feel like you, I hope are going to be helped by this. And people who don't feel like you are probably like, Oh, my God, this poor girl. Because you're because you're tortured and you don't even know it. Right? You know what I mean? And but I think now that you say it, like somebody's pointed it out to you? I think I think you could pretty easily walk away from it. I want to hear back from you. Would you email me? After a week of not listening to the news? Would you email me? Yes. I'm not saying you have to start today, although you should. But but after for seven days, you have not consumed any media news. Send me an email and tell me how you're feeling.

Carlie 1:24:23
I'm gonna go on Instagram and Twitter. And I'm going to unfollow all the news outlets. So I follow

Scott Benner 1:24:29
I think I think Twitter is probably very bad for you. I think you should consider the something that you cut out for a week as well. Yeah, Twitter's not good. I can't I can't even ask for you. That's just where people argue with each other. Yeah, that's news without the stories. Yeah,

Carlie 1:24:48
no, no, you know what I do? Like, I like tick tock. I hate to admit it, but I do want to cute dogs on their on my feed. Is

Scott Benner 1:24:56
that what your Tiktok looks like? Yeah, cute dogs. I do. Got the tick tock, because I have some content that I think for the podcast that is gonna go up on it soon. Yeah. And I don't like I don't consume the Tick Tock thing. Like, I don't go through the thing. I do notice though, when my kids are using it that tick tock just appears to be girls making their breasts and butt jump up and down. That's all the talk looks like to me. Right? Like my daughter even said to me, she goes, girls are just flat out not even wearing bras anymore. They're just putting on T. Bouncing. Like,

Carlie 1:25:35
sometimes we'll be on it and you're like, I can't believe this is allowed on. There no, like guidelines.

Scott Benner 1:25:40
Yeah, tick tock to me. Seems like porn where people leave their clothes on and don't quite get to the sex.

Carlie 1:25:46
Yeah, yeah. Yeah, definitely.

Scott Benner 1:25:49
It definitely is. I'm not getting it. Right.

Carlie 1:25:52
I think you are. You've got it. Gotcha.

Scott Benner 1:25:56
But anyway, I back to this was incredibly valuable. I think it was valuable for you, you'll let me know. But I definitely think it was valuable for other people. Now, some people might just think I'm a pompous like blowhard. But that's fine. They can not listen or listen and hate me. By the way, if you're listening and you hate me, as long as you're downloading it, I don't care.

Carlie 1:26:14
Exactly why you're listening. If you hate me,

Scott Benner 1:26:18
that's all good. But um, but I mean, I listen, I don't know everything. But this seems pretty obvious. You're you're caught in a in a in a fear spiral. You just need to step out of it. That's all. So good luck.

Carlie 1:26:33
I appreciate all your all your assistance. I don't try to listen back on this. So maybe I'll like, I'll listen to it. And I'll take notes.

Scott Benner 1:26:42
That way, I stopped taking notes, Carly, this doesn't know me to go over it. It's not hard, okay. You're putting yourself in situations where you're allowing yourself to consume things and see things that make you upset. Because you like being upset. Because that's how you grew up. It's that simple. And if you stop doing it, and go focus on your relationship with your husband, and build a new different life where people aren't upset all the time, then you'll start liking that. That's it. There's no more or less to it than that. Well, life is really easy. Harley,

Carlie 1:27:20
it it is it doesn't have to be so hard.

Scott Benner 1:27:24
Super easy. Now listen, if you're living in an alleyway, and you don't have a job. It's not easy. But you have a house or an igloo, whatever you live in. And you you know, there's some boy there that cares about you. You care about him. He cleaning the place for you. Probably cooking too, isn't it? More than cocaine. So you're cooking, he's cleaning, you're paying for the place, you're gonna get a dog, which by the way, huge mistake, but I don't want to get into it right now. And so you together, you try to build a life together. Try to find that motivating. Try to find try to find happiness and happiness, not happiness and craziness. That's all this is. Yeah, there's nothing more or less to it than that. Here here. Spend less money than you make. Okay, save some. All right, do your best to save 10% of what you make in the beginning when you're younger. If you're if your jobs are for your 401 K plans, put as much into them as you can never think about it again. Just do it. Okay. Try to buy things stay away from credit when you can. That's it. It's gonna be fine.

Carlie 1:28:41
Yeah, the way he just said that. I think I think my dad has said the same thing to me. So when he listens to this, you're gonna be like, This guy's great. He knows really,

Scott Benner 1:28:49
father. Oh my god. I haven't mentioned him once because I feel terribly for him. I imagine him just standing in a corner going like, holy crap, these two won't stop. And like and he's just like, Oh, my It's too late to leave. You know, they mean like, I've been doing it too long. And you have other brothers and sisters.

Carlie 1:29:11
I have a sister and a brother. Yeah, they

Scott Benner 1:29:14
they do they do this stuff too. Or no?

Carlie 1:29:18
Okay, well, the my brother He's younger. He's anxious like me, but he smokes a lot of weed. So he's got he's got a good my sister's anxious but she's not. She's got I think she's, you know, yeah, no, Rawlings.

Scott Benner 1:29:34
Not right.

Carlie 1:29:35
My dad is not anxious at all. Like when he talks about anxiety. Yeah, he's like, I don't even know what that feels like. And I'm like,

Scott Benner 1:29:41
No, I know that because he's the one that went to the endo appointments with you. Yes, exactly. thing figured out for like the last hour and 10 minutes now, but that's the point. So, so yeah, so I've literally if he's listening, sir. God bless you. I don't want out from Pakistan. okay to not come back here to get some milk I'll be right back some to tune or wherever those other places are that you live there is a Saskatchewan tune right?

Carlie 1:30:17
I think so thinks that's bad, but I don't know. I think there is terrible

Scott Benner 1:30:24
terrible Canadian. Have you ever even stabbed anyone? Never. Oh my god.

Carlie 1:30:29
I've never even like, what's something I've never even I've never seen or snowboard.

Scott Benner 1:30:34
I love the Okay. Do you love it when they they put the biscuit in the basket or do you not even care about that? What is that hockey? You do hockey? Oh,

Carlie 1:30:42
I don't know. I didn't know what you were saying. I know hockey. I don't play hockey. And I've never been to an NHL. I was an NFL.

Scott Benner 1:30:52
We're gonna call this episode. Carly's poor father.

Carlie 1:30:55
You that's a great title.

Scott Benner 1:30:57
I don't know what this is gonna be called. It's gonna take me a lot of fun. All right, Carly, I want you to get started on your new life. Start today. Okay. On the same two off your phone right now. Tell me two apps. You're taking off your phone. Two apps two whole app? Yeah, you're gonna just take them off your phone right now.

Carlie 1:31:14
I don't even know. Maybe. Say Twitter. I should I should take Twitter off.

Scott Benner 1:31:19
Okay, well. I don't know. It's apps on there.

Carlie 1:31:25
I don't think I haven't. No. Yeah, I do. I have the Apple news app.

Scott Benner 1:31:28
I'll get rid of that to get rid of Apple news app or just shut off the what's his name? send notifications to for that stuff? Yes. Oh, you're probably the notifications you probably love right. They probably light up. Oh, as your center.

Carlie 1:31:40
Yeah, my I got to go listen

Scott Benner 1:31:45
to what's happening. This is a bunch of people got killed. Let me look. Oh, Mom. Did you hear? Boy. All right, Carly, I can't fix you any more than this. I've done all I can do.

Unknown Speaker 1:31:59
So much. All right, hold on one second.

Scott Benner 1:32:06
A huge thanks to Carly for coming on the show and having this great conversation. I'd also like to thank Dexcom, makers of the Dexcom G six continuous glucose monitor. And remind you to go to dexcom.com forward slash juicebox inkind. Let me also thank the Contour Next One blood glucose meter. And again, remind you about the link contour next one.com forward slash fuse box. Now there are links right in your podcast player in the show notes where you can find them at juicebox podcast.com. When you click on my links for use them when you type them into the browser that really does support the show. And here's one more that you can use touched by type one.org. This was a pretty long one. So let me just say thank you. Appreciate you listening. I appreciate when you leave those great ratings and reviews in your podcast app and when you tell other people about the show. I'll be back very soon with another episode of The Juicebox Podcast.

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#696 Double Transplant

Michele had a kidney and pancreas transplant.

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

Scott Benner 0:00
Hello friends, and welcome to episode 696 of the Juicebox Podcast.

On today's show we'll be speaking with Michelle who's had diabetes for well over 40 years, but most recently has had a kidney and pancreas transplant. She's here today to tell us all about it. While you're listening, 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. If you're looking for the diabetes Pro Tip series that begins at episode 210 In your podcast app, you can also find it at juicebox podcast.com diabetes pro tip.com, or a complete list of the Pro Tip series and other series on the private Facebook group Juicebox Podcast type one diabetes up at the top in the featured section. If you're enjoying the show, please subscribe in a podcast app and tell a friend

this episode of The Juicebox Podcast is sponsored by Ian pen from Medtronic diabetes, vn pen is a reusable smart insulin pen that uses Bluetooth technology to send dose information to a mobile app. And I'll be telling you more about it later in the program. You can also go to in Penn today.com. To find out more. If you have type one diabetes, and are a US resident or are the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the registry, complete the survey. And just like that you've helped people with type one diabetes and supported the Juicebox Podcast, they're going to ask you incredibly simple questions about type one, you'll know the answers, they're not going to be difficult. The entire thing will take less than 10 minutes. It is completely HIPAA compliant and absolutely anonymous. T one D exchange.org. Forward slash juicebox.

Michele 2:32
I am Michelle. I have been a type one diabetic for 45 years. And in May of this year, I had a kidney pancreas transplant. So that's why I'm on to talk

Scott Benner 2:47
I Michelle 45 years. All right. This is oddly going to be easy. Because it's 2021. So I just take 20 away, right? And now I'm down to 25 years, then I take the one away down to no way then I'll take 20 More away I get down to 1980. And what am I left with five? Did you were you diagnosed in 1975 76? Close? I was feeling pretty good about that. All right. That's, you know, I was born in 1971. Wow, how old are you?

Michele 3:22
I am 59 years old.

Scott Benner 3:26
You weren't born that much before me. 1962. So I'm just gonna say that a little bit.

Michele 3:33
I'm proud to be this old. I'm lucky to lift as long as I have.

Scott Benner 3:38
I'll tell you right now that I know you're saying that because you have diabetes. Right? Right. And when you're diagnosed, I don't have diabetes, I feel the exact same way. I got up this morning and I was like, I had my pants right. And my back is stiff as it always is. And I think to myself, Do I like Go for it? And just like pick my leg up like a person and stick them through? Or do I lean on something just to make sure I don't stumble?

Michele 4:07
That's pretty sad, but understandable.

Scott Benner 4:13
People want to understand they get older, right, Michelle? Exactly. Okay, gives them something to look forward to. I look forward to having to consider putting your pants on.

Michele 4:26
Struggle some days.

Scott Benner 4:28
I am determined to to fix this somehow. I don't know what I'm gonna do. I'm thinking about different exercises to strengthen. I'm trying different stretches but I just My back is hurt since I was like 20 years old. So I would like that to stop one day. I would just like to get up one day and not think about that. But I'm complaining to a person who had a couple of their organs pulled out and replaced with organs. So why don't I stop that and ask you a little bit about what it was like to have diabetes for 45 years.

Michele 5:00
Well, I was diagnosed at 14. So that was interesting. Because if you're, you know, getting right into those teenage years, and now something's wrong with me, which was very shocking, because I had been held healthy, pretty healthy up to that point. So, you know, I diagnosed spent a week in the hospital went home, I only saw a primary care physician. And I would see him once a year. So he would do a fasting blood sugar. And send me on my way for with my one shot a day of beef, pork insulin. So it went on like that. Boy for probably 10 years or so. Up, a friend of mine was diagnosed. A couple years later, she was she was a semi close friend, but not real close. And she came back from being diagnosed and was like, you know, you have a lot to do. And I'm like, not really take a shot today. That's pretty much it. All I have to do. So I went on for many years really, kind of living a normal life. With this one shot a day that I had to

Scott Benner 6:25
do, yeah. But what was testing like, then, like, how were you measuring success? Or where were you not?

Michele 6:35
I basically was not. So they showed us how to do the urine test. But to me, it made no sense at all to do that, because I couldn't do anything about it. So if it came back, hi, what do I do? There's there was really nothing I could do. They didn't really talk about increasing insulin or decrease in insulin. You know, they had me on the one shot today. So it was very interesting.

Scott Benner 7:02
So you could see you take this injection, and then their advice was to do the urine test strip, and then, but then no matter how the test came back, there was no next step.

Michele 7:15
Exactly. Exactly. So I had to eat at certain times during the day because you'd have those peaks and valleys for the insulin. But I'm a pretty relaxed person. So I wasn't on a strict schedule. It was more if I felt like I was need to do something. I would eat something my mother would make me breakfast every morning. So I would have breakfast right away. But beyond that, I pretty much lived a normal life.

Scott Benner 7:43
Okay. All right, and how long with high blood

Michele 7:46
sugars? Yeah, of course.

Scott Benner 7:48
You were were those urine tests usually high?

Michele 7:53
When I did them, but I quit doing them pretty quickly after diagnosis. I didn't really pay attention.

Scott Benner 8:04
I hear you. So I get that. How many years do you think that you did that just didn't just did that contest and did your doctor ever up your insulin like based on like weight gain or age or anything?

Michele 8:18
I just saw him once a year. And I don't remember him adjusting it. It was always like you're doing fine. Keep doing what you're doing. And like I said he was a primary physician. I didn't even know about endocrinologist at the time. So he diagnosed everything from diabetes to cancer to everything in between. Okay, and

Scott Benner 8:46
let's say Say that again, for me, you saw him

Michele 8:50
from 1976 to probably through college. Okay. So ad one, ad two,

Scott Benner 8:59
so he's not an endocrinologist. He's just a row. Okay.

Michele 9:03
And just a primary care. What general practitioner,

Scott Benner 9:07
what other issues did you have during that time?

Michele 9:10
Um, really? None?

Scott Benner 9:11
None. Okay. All right. So he just didn't do anything. You just kept injecting staying high and Japanese thing. winded. I'm like, I'm guessing that the technology changed somewhere and you changed with it or No,

Michele 9:23
I changed influence. I went to the you know, the synthetic insulin versus a beef pork. When that was available. I saw my first endocrinologist in the 80s because I went to was going to grad school. And I lived with my brother and sister in law and my sister in law was a nurse. So she recommended seeing an endocrinologist, which I went to his reaction was pretty much if you don't fix this, you're gonna die. Okay, and I, because he had me start doing finger tests, like at that point, the finger testing was available. So I would do it. And he had me doing it three times a day. And it was always in the two hundreds. But again, he didn't tell me what to do. And it was a little bit longer till they had that sliding scale, where if your sugar's this, take a shot, if it's this take a shot. So he didn't really give me a whole lot of information. So go ahead. Did you?

Scott Benner 10:33
Do you remember having any feelings about the information that you had gotten prior from the other doctor at that moment?

Michele 10:41
It was kind of shocking. It was like, Oh, I'm supposed to be doing something differently. I didn't know I had, I really didn't know. And but I thought I was doing what I was supposed to be doing. I, you know, do my show today and go on with life. I was went all through college that way. Did my shot a day if I like, spent the night at my friend's house or something, I just go back in the morning and take my shot. So it was just kind of a, you know, crazy time, or you especially now with all the technology that's available

Scott Benner 11:14
and what you can see now. Yeah, were you in your mid 20s. At that point, when you switch the insolence.

Michele 11:20
I was mid 20s. And then shortly after that, I was diagnosed with retinopathy. Wow. So that really scared me.

Scott Benner 11:29
Yeah. When you first get the hay, you're gonna die. If you don't do something talk. Do you even believe it?

Michele 11:37
I was kind of like, yeah, yeah, yeah, whatever. Like, I've been living this way. All this time. No one's ever told me anything differently. But I did what he told me to do, like, I'm a rule follower. So he told me to do this testing. So I did change the insulin I did. So that was my life. But, you know, once the right not that the came out. And I was dating somebody. And at that point, it was like, oh, I need to do something about this, because I don't want to go blind. So, you know, had laser surgery in both eyes. And that was probably 87. And, but I haven't had any eye issue sets. So they have been stable since then. I've got a lot of laser burns in the eyes, but the eyes have been very stable.

Scott Benner 12:34
Okay. Okay. Wow. That's crazy. Okay, so you're, you're so you're still doing it now. So now you're testing and you see your blood sugar's higher. But it takes more time to even get to the point where doctors are talking about making adjustments once you see your blood sugar.

Michele 12:53
Well, right. I mean, we they had the sliding scale, so then I would use that. Okay,

Scott Benner 12:59
about that point, what point in your life? Do you think the sliding scale popped up?

Michele 13:03
That was probably 8586 8586.

Scott Benner 13:05
Okay. That's okay. But it all makes a lot of sense. I'm just thinking back to when my friend was diagnosed in like 88. And I'm just putting the pieces together kind of backwards from what you're saying to this at all, that all lines up for me really well. But so when the retinopathy laser surgery in the 80s? Yes. What was that like?

Michele 13:32
It was a bright light flashing in your eyes. I probably had three times on my right eye, two times on my left eye, they would give a shot to numb the eye, kind of underneath that in their eye. And you would see bright flashes of light. I didn't like it. But I didn't want to go blind. So, you know, I kept going back for those.

Scott Benner 13:57
Yeah. And that and that. Plus, I'm imagining your control started getting better as well.

Michele 14:04
Right. You know, just because now I'm seeing of endocrinologist, I'm seeing a regular doctor. Then I met my husband in 87. We got married in 88. So he was there through the timeframe of the laser surgery. And, you know, shortly after that, I started talking about having a baby. Now my endocrinologist was like, I don't have time for you. So he ended up sending me I'm in Cincinnati, he ended up sending me to University of Cincinnati hospital that had a clinic for diabetics. And they were it was a study kind of measuring the effects of high blood sugar and low blood sugar on children that were born. So I entered that study and the doctors there saw me all you know quite often, even before I got pregnant to get the blood sugar's more in line, but they were proud played a Wednesday was probably still in the eights and nines at that point.

Scott Benner 15:05
I am fascinated that you there was a time where you could say to a doctor, hey, I'm gonna have a baby. And I'm like, yeah, get out. I don't want to be involved in this. But also that he sent you to a study, do you think he sent you to the study? Because they're like, well, this lady is going to provide good data if she gets pregnant, or do you think this study was meant to help you?

Michele 15:27
I really think that he, I think he didn't have time to deal with me and my blood sugar's so he sent me the study so they could deal with me instead.

Scott Benner 15:41
Alright, Michelle, are you telling me that that that standard care wasn't very adjusted, and you were trying to figure out something greater?

Michele 15:51
I believe once I knew better, I believe I stayed on top of technology and things like that. When I was pregnant with my first son, the nurse there had started wearing an insulin pump. And she suggested I get on it. But at that point, I didn't know how those worked. So I had my first child in 91. So I didn't know how the pumps worked. And my belly was so big, like, how is that going to fit on my belly? Because it was Medtronic back then. So I didn't start that till probably 9394, maybe 90, maybe 95 on the Medtronic pump.

Scott Benner 16:36
Okay. Wow. That's a that's really a tale. And now and you're still just, I mean, did you did you end up having a baby?

Michele 16:45
I had two sons. They were both healthy, healthy. They were big babies, but, but I was a big baby. So I'm, I'm sure part of it with the diabetes, but part of it was just having the genetics to have big babies. My first son was 10 pounds, or nine pounds, six ounces. And the second one was 1013. But I was 11 and a half when I was born, and my mother was not diabetic.

Scott Benner 17:15
Any other diabetes or endocrine issues in your family?

Michele 17:20
Yes. So my brother, I'm the youngest of eight. My brother, who is eight years older than me, was diagnosed at 14 as well. But he kept it really private. And he saw the same doctor as I did. So he had to boil his insulin needles and, you know, reuse the needle every day. So it wasn't a big shock. When I was diagnosed. We were all tested, when he was diagnosed. And none of us had it at that point. But I kind of had a feeling in the back of my mind that I was going to get it someday. I don't know why. But so when I was diagnosed, I was unhappy, but it wasn't a big shock. But again, I didn't see him living a very different lifestyle other than, you know, taking his shot every morning. Well, yeah,

Scott Benner 18:11
there was a lot of like, just masked ignorance right about what was Exactly, yeah. How.

Michele 18:17
And the funny thing is, we're a very smart family. We're not dumb. So it just the information wasn't available. You didn't have Google, you didn't have your doctor wasn't telling you. You didn't know it just

Scott Benner 18:30
didn't exist yet. It just you were doing the best that that was available to you. Exactly. How is his health generally?

Michele 18:39
His is not as good. He lost a leg. And he has trouble getting around now. He's still alive. So he's eight years older than me. 67. But not very healthy.

Scott Benner 18:59
Okay. Did he ever make the switch like you did.

Michele 19:04
He finally he got on an insulin pump. Gosh, I don't even know 1015 years ago, but it was much later than I did. And then he did try. He stayed with Medtronic. And he did try their CGM. But really didn't use it very often. And I talked him into the Dexcom. And I'm not quite sure how often he is. He doesn't like to talk about itself. Yeah, so we don't spend too much time talking.

Scott Benner 19:39
I understand. Okay, well, I appreciate you sharing that with me though. That's it's valuable information for the for the big pick. So

Michele 19:45
that's one. Pretty much everyone. All my siblings have thyroid problems one way or another either low or high thyroid. I have a nephew with type one diabetes. And there's talk about an uncle that had diabetes, but there was it was never very clear about whether he was type one type two or what, how that was related?

Scott Benner 20:13
Sure. What about genealogy? Where are your people from?

Michele 20:17
We are from Slovakia and Poland to half of each interesting. Thank you. My grandparents actually came from those countries.

Scott Benner 20:27
My wife's mother grandmother, my wife's mother's mother is Polish, and she had celiac. And they call it the sprue.

Michele 20:40
That's a new one.

Scott Benner 20:42
I guess at some point, it was referred to let me check celiac sprue I think it's been kind of like rebranded as celiac disease. Yeah, but at some point, it was called celiac sprue pets. That was kind of the, the general term for it. And my, my, my wife's grandmother, who was a generally unpleasant person, just she, she'd be like, I have this sprue I can't eat that. And it kind of went like that. That's great. It really, it really hurt her at the end of her life, because she finally I think she finally gave over to the dieting but way late. And, and it just then she was so old that the dieting for celiac, I don't think she was doing it. Well, she just lost so much weight towards the end of her life. Right. But anyhow, okay, so that's a lot. But I understand I appreciate you filling me all in on it. Now let's get to the fun stuff. Michelle winters really get upside down. Because I'm assuming it happened at some point if you ended up with a transplant right.

So here you are a person who doesn't want an insulin pump, but would like more functionality than a regular old insulin pen offers. If this describes you, you are the exact right person to go to in pen today.com forward slash juice box and check out today's sponsor in pen from Medtronic diabetes, here's what you get when you buy the M pen. First of all, it's incredibly affordable. And that's important. Secondly, you're getting a Secondly, you're getting a well built insulin pen. And that too, is important. But here's where in pen separates themselves from other pens. The M pen has an app. And it speaks to the app with Bluetooth and keeps track of things like your current glucose, your dose calculator, active insulin remaining meal history, dose history, glucose history, activity log and reports. That's right, my friend. The in pen gives you some of the functionality that people get with an insulin pump. Active insulin remaining that's insulin on board, there is a thing you thought you could only get with an insulin pump. But it turns out, it's also available within pen from Medtronic diabetes, head over now to in pen today.com. To find out more, do a little scrolling. And you'll get to the part of the web page that says pay as little as $35 for the impact. This is an offer available to people with commercial insurance and Terms and Conditions apply, of course, but this could be you a $35 insulin pen that has a companion app that keeps track of things that you want to know about. Do you know the Impact app even allows you to manually log your long acting insulin doses and set up dose reminders for your long acting insulin? It actually does that. Isn't that crazy? Oh in pen, what have you not thought of? Here's a couple other little things the pen does. Are you wondering if the pen allows integration with the Guardian Connect system? Well, yes, it does. The integration is compatible with both iOS and Android devices. However, you should check your compatibility for both the Guardian Connect system and the M pen app prior to ordering. So go get yourself the in pen from Medtronic diabetes and have an app that shows your active insulin on the homescreen and allows you to Paris many impairments to the app as you want. This enables the flexibility for you to have one pen at home and another at work or school. Are you kidding me? In pen today.com links in the show notes of your podcast player and links at juicebox podcast.com. But I think you can remember it in pen today.com That's my link you go to that. Find out everything you need to know get started with the pen. In pen requires a prescription and settings from your healthcare provider. You must use proper settings and follow the instructions as directed or you could experience high or low glucose levels. For more safety information. Visit in Penn today.com

Michele 25:16
Okay, so I mean other complications along the way. I have had probably almost all my fingers operated for trigger finger. I had frozen shoulders and both shoulders over time. But see again, you know once once I got pregnant once I was past that I would stay up on technology. You know, I got the insulin pump as soon as I could I got the CGM as soon as I could switch to Omni pod is I think I got the CGM in 2011. Yeah. Got the Omni pod in 2013.

Scott Benner 25:51
So you selling you know, I tried to stay on top? Yeah, ya know, you did exactly what you hear me talking about, right? Like, I'm always saying, you know, pay attention to technology, you don't want to be using the last generation of stuff, you know, keep up with what people are doing, you know, don't switch just the switch. But when it makes sense, you got to keep up because, you know, as we move forward, better technology is going to equal better results and better results are going to equal better health. Right? Yeah. You saw that and you got to it, your your brother either didn't see it, or didn't care to see it one or the other.

Michele 26:29
And he was eight years earlier. So you know, a lot of damage had been done by the time the technology came around.

Scott Benner 26:36
Okay, so you still felt hopeful? You think when when this stuff was available to you, like I can still do something about this for myself.

Michele 26:44
I never thought I never thought I had a shortened life or anything like that. I really just thought, Okay, it's just another piece of me and something I have to deal with. As I move forward. Yeah. So so the eyes checked me. And then over time, it's been a slow progression with the kidneys. So you know, you get a test at the endocrinologist, oh, you're you're creating levels that are higher than they should be. And that went on for years. And then, at one point, I finally said to my doctor, I'm like, should I be seeing a kidney specialist? And he's like, Yeah, you could do that if you want, you know, as the numbers were creeping higher and higher and the creatinine levels.

Scott Benner 27:30
Michelle, test me. Oh, nephrologist,

Michele 27:33
nephrologist. Yes,

Scott Benner 27:35
thank you, Grey's Anatomy, go ahead, keep going.

Michele 27:39
So I saw him and I'm not quite sure how many years I saw him, but I'm still feeling good through all this time. And I didn't really, I really never felt bad. You know, I still exercise I still do all the things that I'm supposed to be doing. I eat right. So then, at the end, January of this year, the GFR, which is what they look at to determine if you need to go on dialysis or have a transplant, it went to 20 or 18, beneath 20. So once it's 20, then you're eligible to get a transplant. So I'm still feeling pretty good. But I knew dialysis is can really be damaging to people. Yeah, so I went to four different hospitals and started just applying for transplants. So I contacted you when I was still in stage four kidney disease. And everything went pretty quickly. So I had to have a majority of tests. You know, you had to make sure your teeth are good. You have to make sure your heart is good. You have to make sure you get a stress test. A colonoscopy like every test in the world. MRIs, CAT scans, they've done every test on me in between January and May. May the end of May, I was finally listed at a hospital for a kidney pancreas transplant. Actually, two of the hospitals would list me one didn't want to because they thought I was too old. But the one I finally went with was really happy with the condition that I was in. They see they said they feel a lot of people younger than me that are in lot worse condition than I was. Okay, so I was listed. And three days later I got a call to get a pancreas kidney transplant.

Scott Benner 29:53
Huh? No, it was so quick. Show. Let me tell you something. So have you heard me talking about my friend Mike? whose past? Yes. Okay. So when he realized he needed kidneys when he started doing dialysis, I would say to him, like, you know, are you on the list, you know, get on the list. And he would always say I can, it's hard. There's money, it's insurance. It's this. And he always felt like, like too big for him to conquer the process. And then you just described how important it was like you went

Michele 30:28
after this, right? Yeah, I didn't wait. But you

Scott Benner 30:32
just were like, I am going to go find out how to make this happen for myself. Exactly. Good for you. Wow. Okay. So

Michele 30:41
right, because the first couple of hospitals I called, they said, No, we don't do any kidney pancreas under over 50. If you're over 50, we don't do it. So then I started doing more research calling around asking, and one of the hospitals I actually went with, told me that they do, do pay increases over the age of 50. But they wouldn't listen to me for that. They would only listen to me for kidney.

Scott Benner 31:08
So Wow. So this is exactly what he used to talk about. Like they always sounded like some people say they'll do both. Some people say they won't, blah, blah, blah, like and so you just had to keep looking to find somebody to do both. Exactly. Michelle, do you not have diabetes anymore?

Michele 31:26
You know, I asked that question yesterday. I'm like, am I type one diabetics? So the answer is, yes, I am still diabetic, controlled with a pancreas transplant. But I have not taken insulin since the transplant.

Scott Benner 31:44
Yeah, that almost made me cry. Michelle, actually, hold on, it might still give it. Hold on, I gotta do that wavy thing that you see ladies doing? Why does that work? By the way, we need to hear up if you just put some cool air on your face. It slows it down. I don't know. I don't either. But trust me, I do it a lot while I'm making this buck. Wow, that's incredible. Good for you. Do the downside of all this is.

Michele 32:12
All right, so there's lots of pills. So over time, I'll reduce the number of pills, because I'm only five months out at this point. So I have to take pills for digestion. I'm told those will go away. Eventually, I take anti rejection pills. So I have three different anti rejection pills, they need to take twice a day. I was recently told I have a low white blood count, which could be related to some of the medicines that I'm on. So you have to be very careful. I am constantly washing my hands. I'm constantly using hand sanitizer, wearing a mask, in crowds, and so on and so forth. So it's not just a breeze. There's still other things you need to do. But I'm feeling better every day. I've got a scar from my chest bones down all the way down. That's healed well. And I think because I was in good health forehand, at least I'm considered myself in good health. I think everything's feeling well. And doing well. Wow, congratulations.

Scott Benner 33:26
All right. So I want to walk through it. You get you get it all set up, and you find a place that's going to do both. Is it fair to say that without the kidney transplant, like what would your life have been like?

Michele 33:43
I had already been tested for doing peritoneal dialysis. So they were already talking about putting the tubes in, which would have been doing dialysis at home every night for eight to 10 hours every night and then another session during the day. So that's taking fluid into your belly, letting it sit there and draining it out every night and every day.

Scott Benner 34:13
And that's not necessary. Even if you did that every night and every day for your whole life. It doesn't mean that things wouldn't continue to go backwards, right? Correct. Yeah. So it's not like you're not stopping it in that even though that sounds like a unpleasant way to have to live. It's not like it would never get worse than there you would continue on. On exactly,

Michele 34:33
which is why I wanted the pancreas because I'm hoping to slow down some of the damage caused by the diabetes.

Scott Benner 34:39
Right. And surgeons must have felt comfortable about it because they gave you the organ Right? Exactly. Yeah. Okay. All right. So when let's start with the day you find out you're gonna get the surgery. What happened? Alright, you when Michelle we've got you know, you're on the list, right? So right Once you're on the list, is it's a matter of matching from donors, I guess,

Michele 35:04
yes, it's a matter of matching the blood type, as well as any antibodies that you currently have in your system. And I don't quite understand all of that. There's a lot of and I've asked, ask people, and they said, it's just it's very, very complicated how they match people with a donor, and you want to be as close as possible to the match, so that you're not rejected. I was lucky to have a B blood type, which means I'm a universal receiver. I can't give to any other blood type than my own, but I can receive from all blood types. So that helped.

Scott Benner 35:45
Okay. And then what was the, the amount of time between? Yes, you can be on the list and hey, we have your stuff.

Michele 35:52
So that was a Wednesday? Yes, you're, you're formally listed. On Friday morning, I got a phone call at 8am. And I didn't answer it because I didn't know the phone number. But then my husband's phone rang. And he answered it, and they're like, Okay, we have a possible donor. You need to hold on and look for this phone number and answer the phone. And if it is going to be your donor, you'll have to come to the hospital to tomorrow morning. So Saturday morning, so you have one day to get your things in order. And in February, I had a new puppy born, so most of that day. So the puppy was born in February, I brought it home in April, thinking I'd have all this time to train her. And so most of the day on Friday, I was trying to figure out what I was going to do with her because my husband works. He can't take care of her. I was working from home, which was helpful because I you know, I could do training in between the times and take her for walks at lunch. So my kids ended up like taking her the day I went into the hospital and drove her up to my sister's house four hours a day so that she could hold on to her while I was recovering.

Scott Benner 37:19
Let's be honest, though. Did your sister do a good job training the dog?

Michele 37:23
She She did a great job. Are you worried she ever lessons? Yeah, no, she did. She's she's an animal lover. She's had animals all her life. And I knew she would do a great job with her.

Scott Benner 37:35
So it must have made your boys feel good to do something. Like kind of like wholesome for you as you were heading into surgery too. I would imagine Exactly. Yeah. How about them? Do they have any autoimmune stuff? The kids?

Michele 37:47
They do not I had them in testing. I don't think it was called trial net then. But because I was in that program. I followed up at the Children's Hospital with testing from for them early on. They hadn't had any antibodies, or whatever the things are called for markers.

Scott Benner 38:06
Michelle, do you think it would be absolutely ghoulish if me if I said trialnet.org forward slash juice box right here.

Michele 38:13
Go ahead, go right. Are you telling? I keep telling my son to have his son tested? And so yeah, I'm all for trial on it. But that was probably the beginnings trial net wasn't really an existence, I think when they started because it was 9193.

Scott Benner 38:31
Okay. Oh, yeah, probably not. You were just getting that testing through a different way. You probably knew a lot of things because of the stuff you did earlier in your life. Right with research.

Michele 38:41
Right? Right. I kind of stayed on top of that. So yeah, they did that we I took them to Children's Hospital for years after that, you know, having them get different kinds of blood tests along the way. And then my younger son recently went back and had more testing done. And he still did not have the markers.

Scott Benner 39:02
So I'm good for him. I'd be nervous too. If you are my mom you understand? Yeah, no kidding. Let's look one more time. Okay, I'm sorry. So now we've got the dog squared away and we're sitting around Are you sitting in your house thinking this isn't gonna happen or it like is it hard to feel hope? Is it I

Michele 39:24
thought, no way is this going to happen? Because I've read you know, my kidney groups on Facebook, I'm on kidney pancreas groups on Facebook and you know the time it takes to get tested and the number of times people have to go and wait at the hospital and then it doesn't match for some reason. So I went on Saturday we went got there at 7am sat and waited and waited and waited they had to go get the organs. They had once they brought the organs back they had to so as I understand it, when they To acquire the organs, they have to wait for the heart to be taken out first, and then the liver. And then so the other organs get taken first, and then the pancreas and kidney come out. So each doctor team, oh, okay does their own organs, so they fluid back. And then another doctor had to take a final look at the organs to make sure that they were still viable when they were back in our location. And I don't know who my donor was, I don't know where it came from. I don't have any of that information unless the donor family wants to tell me Can we?

Scott Benner 40:37
Can we ask you about guilt? Like two things? So did you feel like you were jumping the line? Because it was happening so quickly? And is it a weird thing to be happy about somebody passing away?

Michele 40:52
It is. It is it's, it's odd. But the way I kind of look at it is they were probably already on life support when I got the call. So if it wasn't going to be me, it was going to be somebody else. So that kind of helps me with the guilt of taking it from someone named Michelle, I'm happy it's me. Yeah,

Scott Benner 41:17
I don't think you should feel guilty. I'm just imagining that it has to be a natural reaction.

Michele 41:23
Right? I think if I knew more about my donor, I probably have even more feelings about it. But at this point, I'm just happy. I'm blessed to be able to been on that list at the time I was and been available. I asked them when I was called, is there a backup? And they said, a backup person. Like if I don't give it they will get it. And I was the only person I guess in the country that was a match for this organ.

Scott Benner 41:51
Good for you. I mean, yeah, it's amazing. I would, I would have been like this is nuts. Just because you were probably just resolved right? Like this may happen. It may not happen. It's going to take years.

Michele 42:04
Right? I thought I thought six months, I really thought okay, it'll be a while. Because if it's kidney only the weight per kidney only is like five years plus. Or you can do a live kidney donor, which you can get quicker. And I did have people that said that they would get tested. No one actually had gotten through the testing yet because they don't test them until you're formally listed.

Scott Benner 42:30
I want to know what to ask you so badly. If you believe the people who offered or not, or do you think they do you do? Yeah, okay. I do. I do you know what I mean? Right? Like, I'm not being a I'm not being a jerk. I'm just like, I wonder how many people just out of like, you know, like, are like, Oh, Michelle, I'll get I'll do it. Yeah, I'll do it. Like, you know, do you mean yeah, that's what I was wondering. Oh, this is this is all kinds of

Michele 42:57
friends contacted me because I put something on Facebook just I wasn't asking. I just kind of did my situation update. And two of my friends from grade school that I haven't really stayed in too much contact with over the years. Both offered to get tested. How did

Scott Benner 43:18
that make you feel? Like I imagined it's a it's a wonderful feeling. But do you question it like, Have you ever considered like, I don't know if I'd give my kidney to somebody.

Michele 43:28
I was so grateful. So grateful. It just amazed me how generous people can be.

Scott Benner 43:36
No, it's really fascinating to me. i That's those people. I'd like to talk to one of those people. Somebody somebody that just said yeah, you can have one of my kidneys. That's you don't I mean, like that's a special statement. Right? Exactly. Okay, so you're it's five years of the five years for just the kidney what was what was the expected length for both again?

Michele 43:59
They didn't really tell me but they told me probably within a year, I would find a match. Wow. Because because it's two kidneys or two organs versus one. And pancreas is aren't in as high demand as kidneys are. Oh, I

Scott Benner 44:14
see by asking for the pancreas as well. It moves. So most people are just looking for kidneys. Right? Oh, so by by matching to you we don't waste the pancreas. Exactly. I'm getting it now. Michelle, I'm really coming online here with this. Okay. So, okay, so you're in the hospital. They're like, wow, this is gonna happen. Do you freak out? Are you nervous? Do you have any second thoughts?

Michele 44:42
We waited all day long and I didn't think it was I I tend to think of the worst outcome so that I'm not disappointed. I'm more happy so we didn't really know you know, we're waiting waiting. There's really no word or problem. really their Gosh, at their at 7am, it was probably 12 to 14 hours before they finally came in and said, Hey, listen, we need to do an enema because you're about to go into surgery. I'm like, okay, so all day long, they did not have me eating, but they just wanted to make sure your system is totally clear. And then it happened so quick, like they put me on a stretcher, wheeled me back, my husband saying goodbye to me, as we're wailing back. And I was knocked out.

Scott Benner 45:38
Is there any, any concern about just not making it through the surgery beyond the general concern about being put under?

Michele 45:48
I think my husband was worried about that. I really didn't think that that was a chance. So I just naively, but I just thought, hey, I'm getting this done, and I'll be fine.

Scott Benner 46:01
Did you have that moment on the gurney? When you looked at him? You thought he thinks I'm gonna die?

Michele 46:07
afterwards? Not at the time, but after a couple three comments, and I'm like, Ah, he didn't think I was gonna make it.

Scott Benner 46:16
I gotta be honest with you. I had my appendix out in an emergency situation. And I was like, on the phone to people. Like, I gotta say, oh, no, it doesn't seem crazy to me, they're gonna put you to sleep and cut your body open. I mean, I know people do it all the time. But it's some some people don't react well to anesthesia. So you know, I was doing my diligence column, my call my peeps, you know, let everybody know. But this sounds like it happened super fast for you. How long was the surgery?

Michele 46:51
The original surgery was seven or eight hours. And then the doctor came back and something was too tight. So then I was in surgery for another two to three hours. So in he had to bring the whole team back in, because they had gone home went to bed. So he had to bring the whole team back in and had more surgery. Meanwhile, my husband is there in the waiting room, wondering what in the world is going on going on? And only getting, you know, bits of information back? Oh, we have to take her back in. didn't really explain why they had to take me back in.

Scott Benner 47:30
Let me understand the process seven or eight hours for the surgery come out. You're in recovery. And pretty quickly. They realize you have to go back.

Michele 47:37
Yeah. And I was not awake. I don't remember being awake during that time. So I didn't know anything about it.

Scott Benner 47:44
Okay, something was too tight. And then they can you you know, it's funny as you're talking about this. I'm like, how do they do that? How do they perform surgery for seven hours?

Michele 47:57
I know they had two different surgeons, one for the kidney one for the pancreas.

Scott Benner 48:03
I'm just telling you, I can't stand that long.

Michele 48:05
Yeah, exactly. If you like, some special people. Yeah, they can be called at anytime, day or night, and they have to come in and do the surgery. So they're very special people are go collect, you know, click the organs for more, they need to be collected.

Scott Benner 48:22
My mom has to have surgery next week. And my brother had already made plans to come in to be here a number of days prior to the surgery and after the surgery. And then they up and called us yesterday and said we need to move the surgery to the following week. And I said please don't do that. You know, like I my brothers. My brother's not a wealthy person. I don't imagine he bought refundable airline tickets. And you know, like, right, you know, stuff like that. And so she calls me back an hour later. And she goes, we're just going to do it the next day. And I said, Oh, that's wonderful. Thank you, the doctors just gonna tack it on to the end of his schedule. And I was like, Wow, what an amazing thing. You know, I'll just do one more surgery on Thursday so Bev son can fly in and see her before her surgery. And I was like, wow, yeah, some doctors are amazing. And some you don't get anything out of

Michele 49:12
and I think you know, they have a whole team of people. So I think you know, you've got the original the people coming in that are prepping you and the anesthesiologist and the you've got a whole team of people that do the the closing up afterwards. So I think everyone has their specialty that they stay in for some I'm sure they have breaks during those that 1011 hours

Scott Benner 49:34
still amazing. So you come out how long does it take you to come to and then what do they expect from you? They want you like nowadays they get you moving pretty quickly after surgery. But what was your process like?

Michele 49:46
I I was in the hospital for two weeks.

Scott Benner 49:51
About your I

Michele 49:53
had, like I had some problems. So I think most people are six to eight days. That's what they tell them. But I had some problems like at one point, I couldn't keep any food down. I got Botox in my stomach. Which was, you know, I joke that I got Botox, but it didn't make me look any better. I imagine what that was supposed to do is make your stomach more active to move the food through because I was having trouble keeping anything down. Then electrolytes were kind of out of balance. So I had to have fluid and magnesium and potassium and phosphorus and all those kinds of things added.

Scott Benner 50:34
Were you in danger? Or is this just things they had to do? It?

Michele 50:40
This was ask your question again.

Scott Benner 50:42
Were you in danger? Or were these just steps that needed to be taken? Because

Michele 50:46
no, I think this is it was pretty common. Okay. For the surgeries. Just did people have different kinds of imbalances after that type of surgery?

Scott Benner 50:58
Okay, two weeks, and, and when did the medications begin, right away, antirejection, all that stuff, right away, right away,

Michele 51:08
right away. And then for the first three months, they're really, really careful with you because you have so many anti rejection pills at the beginning. And they say really, within the first year, it's really important to stay healthy through that first year.

Scott Benner 51:24
Did you ever hear Nicole's episodes about her surgery?

Michele 51:28
I did. Yeah, I did. I've listened to you quite a bit. And I'm actually still listening. And I don't know why. It's kind of crazy. But I contacted you back in 2016. When I had my agency had gotten to 6.3. So I messaged you on Facebook. And you said congratulations. Then after that. I was volunteering with JDRF and trying to get people set up for booth at our JDRF tonns event. And I contacted you and you said you couldn't come out to get a booth. But you could maybe do flyers or something and you never sent them. And

Scott Benner 52:21
so I'm very busy. I'm a one man show here. I'm so sorry.

Michele 52:23
I know. Well, then then you came I think the next year or the following year and spoke at Cincinnati. JDRF. tell

Scott Benner 52:31
people how good I was.

Michele 52:33
You were excellent. Did you talk during the luncheon?

Scott Benner 52:38
I did I asked for that actually. Because while everybody's busy wanting their own little space. I'm like, I always think everyone there has to eat and they eat at the same time. So I get to talk to everybody if I eat if I speak during lunch. There you go. Yeah, it's a I remember that there's a big room. It was a really well run event as well. Exactly. Yeah. No, i i It's uh, as far as those things go, I think of that one is almost a gold standard. The person who runs that chapter is type A and the best way and that that event goes off very, very well. I you know, I met Chris Rutan there for the first time. I met him in person.

Michele 53:23
Yeah, I saw him speak when he was there.

Scott Benner 53:25
Did you Okay, yeah. Okay.

Michele 53:27
And then. So, so yeah, I was actually on a panel that day of adults with type one. So the night before they had that reception, and I met you briefly while you were there as well.

Scott Benner 53:44
Oh, at the home was someone's home. Yeah. What is? What is art asking me Hold on a second. I'm sorry. You're fine. She's like, can I call? Can I call who? Me? I'm sorry, this is out of nowhere. I'm trying to figure out what this is. She's had trouble with her loop app earlier. And I helped her through it. Okay, she's gonna call me let's find. Let's find out why together Michelle. I'm just gonna keep Okay. Well, I'm gonna take off one of my earphones. Hey, alright, what's up

Oh, are you home still

so, honey, the problem is there's a little bit of a there's a glitch in the loop app and I need to reset it. So we have to have your the Bluetooth has to be off for like 20 minutes before we do it. That's why I had you do it when you came home when you told me it was working okay, so it's not gonna work till we make this little adjustment in the timezone. It's a glitch in the app. So when are you coming home again? were you headed to a restaurant? Oh, okay, well shut your Bluetooth off. Bring the food home when you get here. Come right to me and we'll do the fix. Okay, and watch your blood sugar on your deck. Stop yourself. Alright, bye. Sorry, Michelle technology let us down there. There's a small glitch apparently in the version of the loop app that Arden is using. And if you try to change the insulin sensitivity, and the timezone in the app is wrong. It crashes the app. So anyway, I don't know if that sounds like gobbledygook to you or not. We should I lose you. Michelle. Michelle, the show my Hello Michelle. Hello. Hello. Hello. Michelle. What the heck? Alright, I'm gonna stop recording. Michelle. Michelle, Michelle. Michelle. Michelle. Hello. Hello, Michelle. Michelle. All right. I'm gonna send her a chat. And you hear me? Hello. This is the end. Aquarius? Why would that song pop into my head? On Aquarius. Michelle Deanna, I can hear her typing. And she's not answering me. See if I have a phone number for do. This is boring. There's no way I'm leaving this in. And yet every time I say I'm not going to leave something in. I totally leave it in

Alright, I've texted her. I said, Hey, it's Scott. I can hear you typing but you can't hear me. And then I said it out loud. In case you maybe would hear people do not want to make a podcast. It's a lot of work. And sometimes it's irritating. And annoying and weird. Why is she unable to hear me? Michelle? Michelle. Michelle. Michelle. Michelle. Michelle. Hello, Michelle. She is not here

all right. I'm gonna call her will she answer this while she thinks she's making a podcast? No, right.

Michele 58:47
I can't hear you at all.

Scott Benner 58:49
Oh, okay. Michelle. Huh? She can't hear me at all. Why would she not be able to hear me?

Michele 59:06
I don't hear you. Hey, Michelle. I

Scott Benner 59:08
know we're on the phone now. But I hear you fine. And you're not hearing me. So let me I hear you through the phone. Yeah, let me figure out why that is. I don't know why that would be on

Michele 59:19
mute somewhere.

Scott Benner 59:22
I'm looking that looks right. Nothing here changed.

Michele 59:29
The lower left hand mute my audios that

Scott Benner 59:33
No, I didn't mute anything. I actually was like, keeping you on. I was recording with you. I wanted you to hear the phone call. Like just because I thought I didn't know if it would be interesting for the podcast. Not like I'm not muted. I'm gonna mute myself now. And then unmute myself again.

Michele 59:50
I heard the first part of the phone call but then it went away.

Scott Benner 59:54
Wait, can you hear me now? Through your computer? No. That's insane. There's nothing different here. All right, well, that's no,

Unknown Speaker 1:00:06
I hear you now.

Scott Benner 1:00:07
Oh, okay, I'm hanging up the phone. Now you can hear me. Yes, that doesn't make any sense. But who cares? I'm sorry. So you, you didn't hear all that Arden's having problems. Her loop app has a glitch in it, and it crashed the app. So she's gonna have to come back here in a couple of minutes. You're gonna hear me fix the app again. But she'll be in person when that happens. So I don't think anything should change on the audio. Okay. Okay, I am sorry, that was so long. I forget where we were. But I hope you

Michele 1:00:40
I don't remember either. We talked about post surgery.

Scott Benner 1:00:44
You were going through your medications and and everything you were taking after post surgery, told me that you had some trouble digesting. And then

Michele 1:00:54
yeah, that was in the hospital.

Scott Benner 1:00:57
Sorry, we were in in Ohio. You were telling me about being there. And I was getting ready to ask you. Because you were talking about having seen the been listened to the podcast for such a long time. So why why are you still listening to the show?

Michele 1:01:12
Don't know? The stories are interesting,

Scott Benner 1:01:16
I guess. Yeah. Do you feel bad for not having diabetes anymore?

Michele 1:01:20
No, I don't feel bad. I do know that my body can attack my pancreas again, because I'm still have those more markers that I had before. Those don't go away. Yeah.

Scott Benner 1:01:34
Right. And so it is possible that you could just get type one again with your new pancreas. Right, exactly. Is that based on other transplants?

Michele 1:01:46
I haven't found them. People, like the hospitals will track transplants, like after one year after five years. And they don't do a great job of tracking things after that. Okay. Which is kind of interesting.

Scott Benner 1:02:03
Gotcha. Well, let's just say that would suck. And I hope that doesn't happen.

Michele 1:02:09
Me too. Me too. But I think the technology will be so much further by then. That it won't be such a pain.

Scott Benner 1:02:17
Yeah, well, I mean, you you really are pretty caught up where you are until all of this until you put your pump in a drawer, I guess. Right? So like retiring? Did you like fold it up and put it under your underwear or something like that? Or?

Michele 1:02:27
I wore the Dexcom for about two months afterwards? Because I was afraid it was gonna get the sugars were gonna go high. And then it ran out one time. And I'm like, I'm not putting that back on. Why should I wear it? Okay, so I quit worrying. It

Scott Benner 1:02:44
was pretty cool. It really is. How scary is it to have all this going on during COVID.

Michele 1:02:52
It's worse during COVID. Just I feel more isolated. I can't really it my problems are kind of like COVID, where you can't see COVID. And you can't see all the germs in the system. So you don't really know where it's safe to go and what's not safe to do. So if I'm in public, if I'm in a group of people, I'll wear the mask. If I'm just around a few people I won't. It's much more easy to find a mask than it was probably prior to COVID. Yeah.

Scott Benner 1:03:28
You go all the way using it again. And 95 mask? I do. Yeah, I would. Yeah, I put one over my eyes. If I was you, just in case.

Michele 1:03:37
I know. I work I work glasses most of the time. So I'm a little protected.

Scott Benner 1:03:42
I would wrap my whole head in one, just bubble wrap people would be like what's wrong with her and I'd be like, I just had a transplant. Get away from everyone get away from me. But the feeling of isolation is real. It's terrible. You know, so I feel free there. And you said the first

Michele 1:04:01
I just had a baby granddaughter. I have a three year old grandson and a newly born baby granddaughter, and I've gone over there and saw them. I wore my neck the whole time because I'm worried for her too.

Scott Benner 1:04:15
Yeah. But congratulations. That's lovely. Thank you. Good for you. How's your husband handle all this? Has he been helpful? Did he do like is he like, standard guy thing? Does he stand in the corner and wait for you to need something? Or has he kind of jumped into action?

Michele 1:04:31
He he tries to be helpful. I mean when I was in the hospital. So the hospital was two hours away from Cincinnati. And I had to go two times a week after I was released from the hospital. So I actually had my top four brothers and sisters are all retired and they spent a week to 10 days with me and driving me back and forth because I couldn't drive for a while and But he would when I was in the hospital, he would come home from work, drive the two hours, sit with me for two to three hours, drive home. And then you know, wake up the next day do the whole thing again. So he runs his own business. So he doesn't have the luxury of just calling in sick, you know, he's off to do the work.

Scott Benner 1:05:20
Somebody got paid for those pills.

Michele 1:05:22
Exactly. Do you and I'm still working. So I carried the family insurance, which is good.

Scott Benner 1:05:30
At this point. Yeah, good for you that you're able to work through the they gave you would you take like FMLA little medical leave, and then come back start

Michele 1:05:39
short term disability for the first three months. And then I came back and they're allowing me to work for from home for six months, because the hospital requested that I do that. Excellent. How do you like working from home? I love working from home. So I've been working from home for a year and a half now. And it's awesome.

Scott Benner 1:05:58
I have to admit, I enjoyed myself. I don't know like the best probably is just very, you know, I don't know how interesting this is to people. But I love that I can get up in the morning, do a bunch of my work, record an episode, go, you know, grocery shopping, if I have to then come back and start working again. Like it's so it's so nice not to have to do stuff like that. At the end of the day when you're exhausted. It's so much easier to work until you're tired and then stop at the end. I do find that I work too long. Because I because my job's at home. Yes, but But I do like the knot. I do like that part of it like getting to break up the day. I do wish I had to move around more though. And that that. Well, that's right.

Michele 1:06:43
I did get my puppy back. And she has way more energy than I ever expected. So I get out at lunchtime and take her for walks. I'm up to like, I don't know, a mile and a half a day taking her for walks. So that's good.

Scott Benner 1:06:57
How long did your sister have the puppy?

Michele 1:07:01
About three months? Wow.

Scott Benner 1:07:02
Did she have trouble giving it back to you?

Michele 1:07:05
I think she was ready for me to get her get her back.

Scott Benner 1:07:09
So not attached. She's like, Please somebody come kick this

Michele 1:07:12
off. She was shocked at the puck he still remembered me. But she did. We met about halfway and picked her up. And she still remembered me and came home and is very attached.

Scott Benner 1:07:25
That's excellent. Good for you. Is there anything? We haven't gone over that I've missed? Because I don't understand the whole process?

Michele 1:07:33
I think we hit a lot of things. I don't I don't have anything that I can think of off the bat.

Scott Benner 1:07:41
Yeah, what is your moving forward look like? Oh, you thought it's something go ahead.

Michele 1:07:46
I was just gonna say the reason I wanted to why I didn't really want to be on the podcast. But the reason I contacted you was because you can't find anybody going through the kidney issues. Like there are a lot of people online but no podcast, no type one diabetes, talking about complications and things like that. And I wish I you know, I listened to Nikki, listen to her calls, but having people with real life experience is so difficult to find. So I broke down and said, Okay, I'll be on the podcast and contacted you and you're like, Okay, set it up.

Scott Benner 1:08:30
Let's go. I'm very grateful for this. And I agree with you there aren't I mean, listen, if you have a four year old that just got diabetes, I don't know how fun this is to listen to. But, you know, I think there's some solace that comes from the fact that you were diagnosed, you know, in the 70s, your care is nothing like care is now. But in fact, there are still people who don't, who don't pay attention and or don't have the tools or don't have the knowledge or whatever you want to say, to create, that you still can create this problem for yourself in modern times. You know, and so it's, it's good for people to know what could happen, you know, people who are like, Oh, my blood sugar is just 200 all the time. Well, that's what yours was. Right? You know, and,

Michele 1:09:16
and I was just naive. I'm sure there was more things I could be doing. You know, the more I talked to people or volunteer with JDRF there are people that have been diagnosed as long and knew more than I did at that time, right? Yeah, yeah, I just didn't have the the contact

Scott Benner 1:09:33
information just did not have access to the information. That's why I like to have people on to talk about all kinds of different things. Because I know there are some people are going to be like, don't you know, why are you telling me about complications, but it's so that you understand the big picture, and so that you can then apply it back to your life and think maybe I am missing out on something the way Michelle was missing out on something. Great. Did you enjoy Mike's episode about complications? Which one was that? Very recently it was an after dark about complications. Oh, yeah, yeah. I listen to that one. Yeah, that's the kind of stuff that has to be said once in a while, like you said, because nobody talks about like, I mean, I'm, I'm nearly 600 episodes into this, as I'm recording this right now, no one's ever no one has ever once contacted me and said, I want to tell you what it's like to be on dialysis. You don't think there are people listening to this show who have been on dialysis who are on it now. And no one's ever reached out and said they want to talk about it. And I understand that, but I'm saying there are plenty of people out there that might benefit from hearing from those people as well. Exactly. Yeah. I'm glad you did this. Thank you.

Michele 1:10:42
You're welcome.

Scott Benner 1:10:43
Let me just ask you a couple more questions, and I'll let you get back to your life. So moving your your new lease on life, moving forward, is your it's about staying healthy, staying away from being ill taking your pills, but what other milestones are you looking forward to or having to reach?

Michele 1:11:03
I want to start traveling again. So we're possibly doing something in February, we'll see. I still have to make reservation. So we'll do that. I'm spending more time with my grandkids that's on the top of my list.

Scott Benner 1:11:20
You want to travel somewhere warm?

Michele 1:11:21
I want to retire soon. But it's kind of out of the picture right now. It's I carry the insurance. And I'm too young for Medicare set. Well, I actually I'm on Medicare for three years, but my insurance is primary and Medicare secondary for 30 months. So how did you get on this early because of the end stage renal disease. So as soon as the transplant hit, I'm eligible for Medicare for three years. Gotcha. Okay, that only takes me to age 62. So it's still another three years in between till you can go on or I can get insurance.

Scott Benner 1:11:55
Right, right. I understand. Wow, that's a little scary to me. Yeah. But you'll you'll, it sounds like it. Listen, I gotta be honest with you, Michelle, you kick an ass. So I don't imagine you can't get any of this done. You took the bull by the horns about 16 times in this story. And ended up getting everything you needed. So I'm really impressed with you. Seriously, thank you. Yeah, thank you. Good for you. All right, I'm gonna, I'm gonna say thank you and let you go. I really appreciate this.

Michele 1:12:27
Okay, thank you. I appreciate all that you do. Oh,

Scott Benner 1:12:30
it's my pleasure. It really is. Hold on one second. I'm gonna say goodbye to you like privately. Okay.

A huge thanks to Ian pen from Medtronic diabetes for sponsoring this episode of The Juicebox Podcast, head over to Ian pen today.com. To find out more, you can also find those links in the show notes of your podcast player, the one you're listening in right now probably at juicebox podcast.com. Don't forget if you're a US resident, please go take the T one D exchange. Survey. Take it from me t one D exchange.org. Forward slash juicebox. Thank you very much for thinking about doing that. Alright, so we thank them pen. We thank you. Who do I thank you. I will thank you in a second. We asked you about the T one D exchange. What else should I say to you before I let you go? I don't have anything. Oh, my goodness, my mother, where are my manners? I want to thank Michelle for coming on the show and sharing her story. How crazy is that? That she got that transplant so quickly. Absolutely stunning story. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Oh, I'm sorry. You know what I Michelle sent me a note later she said when we were talking about other autoimmune stuff in her family. She neglected to talk about her sister who had Ms. She said it progressed very quickly. And she passed from it at age 48. Her sister was six years older than Michelle. She asked me add that and I wanted to wanted to do that for Okay, so again, thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're enjoying the show, please subscribe or follow in a podcast app like Apple podcast, Spotify, Amazon music, wherever you listen in an app. If you're enjoying the show, tell a friend about it. Or an acquaintance or anybody you think might enjoy it. Tell your doctor about it. Tell somebody Thank you. This show grows when you share it with people and that's why I asked you to do that. Alright, that really is that now I'm gonna go I hope you have a good day.

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#695 Allergic to Insulin Part III

Morgan has type 1 diabetes and is allergic to insulin.

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

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

Scott Benner 0:00
Hello friends, and welcome to episode 695 of the Juicebox Podcast.

Today we're going to be speaking with 17 year old Morgan and her family. Morgan has type one diabetes, and she is allergic to insulin. Please remember, while you're listening today that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. This is a standalone episode, but if you really want the full context, you should also listen to episode 504. Allergic to insulin with Sasha and episode 578. Allergic to insulin part two, with Dr. McCann, Who is today's guest, Morgan's doctor. Hey, if you're at type one who is a US resident or a US resident who is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the survey take during the survey. Join the registry, take the survey. support people with type one while you support the Juicebox Podcast T one D exchange.org. Forward slash juicebox. This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter. Learn more and get started today at contour next one.com forward slash juice box, you can use the meter that my daughter uses. It's small and convenient, and very, very accurate. Contour next one.com. Forward slash Juicebox. Podcast is also sponsored by touched by type one. They're an organization helping people living with type one diabetes. They're touched by type one.org. They would love for you to check them out and find them on Facebook and Instagram. All right, I'm gonna hit record. And then I just need to test everybody. So just Morgan just say hello.

Morgan 2:18
Hello.

Scott Benner 2:19
Perfect. Go ahead doing Kyoto. Hello. Excellent. And then of course, Jennifer. Hello. We are all being recorded. Just lovely. All right. Okay. Let me wrap my head around how we're going to do this. Usually I just tell somebody to introduce themselves. But why don't I do that a little bit. Oh, hold on a second. Before we get going. Whoever's computer's making the sounds is that a PC or a Mac? PC PC? Do you know how to stop it? Because I only know how to stop it on the Mac.

Dwayne 2:56
I was just adjusting the volume, so I won't be doing that again.

Scott Benner 2:59
Okay, all right. Oh, I thought it was like you got an email or something like that. All right. You know what? Let's just do it the way I usually do it. So let me tell you this. You don't need to use your last name. As a matter of fact, unless you really want people to know who you are. Don't. That's up to you guys, though. I don't care. Honestly. Why don't we just sort of go around the horn like Jennifer, go ahead, introduce yourself.

Jennifer 3:26
My name is Jennifer. We are living in Texas. We've lived here for three and a half years before that. We lived in Utah. We have a daughter that's type one diabetic and she's allergic to insulin.

Scott Benner 3:42
Okay. And that's you right, Morgan? Yeah. How old are you?

Morgan 3:48
I'll be 18 on September. Oh,

Scott Benner 3:50
my daughter's gonna be 18 in July. Are you going away to college?

Morgan 3:54
No, I still have senior year. Oh, no

Scott Benner 3:57
kidding. Oh, well, then you're gonna have a good time. And Dad's here, right? Yeah. Go ahead. Introduce yourself.

Dwayne 4:05
Hi, I'm Dwayne. originally born in Texas. I had moved to Utah for several years. Before I met Jen and the kids and we ended up getting married. And when my kids are here, we have, you know, six kids all together. And then we move back here for work and close with my family. Oh, that's

Scott Benner 4:26
amazing. So, Jen, you have how many kids of your own? I have four for Morgan the only type one? Yes. Is there any other auto immune among your children or your side of the family? Celiac? hypothyroidism, anything like that? Nope. Just the type one. Okay. And Morgan, how old were you when you were diagnosed?

Morgan 4:51
I was seven. Oh, okay. Well, this

Scott Benner 4:54
is gonna be interesting, isn't it? I'm gonna give a little backstory now. So I did an episode with Sasha who was right, allergic to insulin. And not long after I put the episode up. I got this email from a doctor who has since been on the show, so you can share her name Morgan, what's her name?

Morgan 5:15
I'm Bonnie McCann,

Scott Benner 5:20
you call her body?

Morgan 5:22
Occasionally. Nice.

Scott Benner 5:25
She's very nice. I had the opportunity to talk to her a number of times. She was on Episode 578, which is called allergic to insulin part two. And Sasha was on 504 allergic to insulin. So I did not know until I heard about Sasha, that this happened to people just absolutely crazy. She came on, she explained what was happening to her. And I just I don't know, I was stunned by it. So Morgan, I want to start with you a little bit. Can you tell me when this began? And how it impacted you? Do you know how old you are when it started?

Morgan 6:00
Yeah, um, probably a year or so after I got diagnosed, it started starting to get painful and getting really large lumps and swelling where shots were done. It was just getting bad for it and got progressively worse.

Scott Benner 6:21
So you would say that almost 10 years ago this began. Yeah. And it was only with your fast acting insulin.

Morgan 6:29
Um, no. It was also my long acting.

Scott Benner 6:32
Really. Okay. So whether it was basil or or your meal and your Bolus insulin, you were getting painful sites. Bumps, was there itching or burning or anything like that?

Morgan 6:45
Definitely burning. Yeah. Okay,

Scott Benner 6:47
so Wow. And there was never a break. You never once gave yourself like an injection. You were like, Oh, it didn't happen. This time. It was consistent. Okay. What's the level? You must be like the toughest girl in Texas, right? Like you? Do you like fall over and bump yourself and be like, it's nothing. I just keep going. How do you go? Yeah, right. I mean, how do you? I guess it happened to you when you were little. Right. So So Jennifer, can you can you tell me a little bit about the first time this started to happen, it must have been a panic. Um,

Jennifer 7:24
well, the thing is, is that was kind of progressive. So at the very beginning, you know, of diagnosis, it was injections, but she was so little, she was getting small amounts of insulin. And a year after we got her on the pump, and started doing the pump, but as she, you know, got older, needed more insulin, it started to have reactions of pump sites being read red, inflamed, painful, itchy. And so, of course, we went to the mode of it must be, you know, the adhesive. So then we are trying barrier wipes and different methods, you know, MSB adhesives, then, you know, she wasn't having issues with other things like the Dexcom, she was having issues with the adhesives and stuff like that. So then we thought, well, it must be the catheter, you know, a plastic, so we went to metal, or vice versa. And either way it it still was having reactions. And we thought, Well, maybe it's the how Gauahar wipes because, you know, it's kind of, you know, abrasive. So, we were cleaning sites with, you know, water and soap before putting a site on just to see with that, and that wasn't working. And I remember talking to a nurse on the phone and asking her, you know, could it be the insulin? And she's like, That can't be. And I said, Okay, well, all of these reactions that she's having, is this normal. And she's like, No, how long? Oh, okay, what else?

Scott Benner 9:42
Thanks for your input. Jen. How long do you think from when it began the just the reading and the soreness to when you said to a nurse, hey, could this be the insulin How long did it take you to get from point A to point B on that?

Jennifer 9:55
It was probably a year and a half. Try different things, and it it, you know, not changing. It wasn't changing. And so I remember them deciding to do a different insulin, just to see if it, you know, would be. So different reactions

Scott Benner 10:20
and we're not throwing anyone under the bus here because Morgan's not just allergic to one insulin and not the others or something like that. So, so what what insulin did you start with? What was the first experience?

Jennifer 10:30
The first, the first insulin that she had was Novolog.

Scott Benner 10:34
Okay, then what you go to?

Jennifer 10:35
Yeah, you know, regular. And then we tried? Sorry. It's like, are these insulin?

Scott Benner 10:50
Sorry? Do you try Humalog? Okay, yes. And then when that didn't work? Did you keep switching? Or did you say to somebody I'm telling you to think and so on.

Jennifer 10:59
So we switched again. And we went to we saw an insulin called the P drug pager hadn't heard it before.

Scott Benner 11:07
It's the one my daughter used this, by the way for years. Yeah, my daughter's been using the future forever. And then then when that didn't work for you, just so being really serious once you get into this situation, and I sort of want to hear about this, from everybody's perspective, you're basically being told the oxygen your breathing is burning your lungs, but you can't stop breathing? I mean, is that incredibly difficult to make peace with?

Jennifer 11:36
It? It was it was difficult. Because, you know, I was, I was willing to try anything, anything, you know. So, pump sites were horrible after three days. So then they switched it every two days. Every one day of you know, having to change her sights and hopes that, you know, she wouldn't have a reaction. Yeah. And after 24 hours, you know, the doctor that she was seeing at the time, he's like, I've never seen a pump site like that before.

Scott Benner 12:10
Okay. And that was like, Well, great. Yeah. It's almost like taking your car to the mechanic. And you know, they don't know how to fix it. And they just start saying, like, well, we're just gonna swap this part and see what happens. And, and so do you get hopeless? Oh, yes. Yeah. Yes. Morgan, can I ask you like, did you ever skip insulin or anything like that to avoid the pain?

Morgan 12:35
Um, I would try to a lot. Yeah.

Scott Benner 12:38
Is this I mean, did you did you go to therapy for this Morgan?

Morgan 12:43
Um, not to have recently have we tried it?

Scott Benner 12:49
Yeah, I mean, it just, I'm, I don't know like, I know you're on the spot here. But can you put it into words what it's like to use something when you know it's going to hurt.

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Can you put it into words what it's like to use something when you know it's going to hurt?

Morgan 15:42
Very difficult, and a lot of trying to convince yourself that it's worth it.

Scott Benner 15:50
What are you convincing? I don't mean to be morbid, but are you convincing yourself that being alive is worth it.

Morgan 15:56
Um, at times, the pain would get very extreme to where I didn't want anything to be touching me. Not even like air going on me. So it was a lot to just be there. But then also, hey, you got to do more because your blood sugar's high or a need to do more, because you want to eat, right?

Scott Benner 16:21
And I'm imagining, tell me if I'm wrong. But when they started saying like, move your pump every 24 hours, all it did was make more sore spots on you, right?

Morgan 16:29
Yeah. Okay. The sore spots also lasted for like days. So you'd move it? And then it would be trying to find another spot in between parts that already hurt, because they hadn't held yet.

Scott Benner 16:43
Did you have the extra burden? Were you trying to hide them from other people? So they couldn't see them as well?

Morgan 16:48
Um, occasionally, yeah, I would, because I didn't want my friends and other people to see how red and ugly it would look. So I tried to focus the shots in the sights, where people would have it covered by their clothing.

Scott Benner 17:14
Yeah. Did you ever try change? I mean, did you ever go to the extreme of changing your diet significantly?

Morgan 17:20
Um, I try to eat a lot the US or avoid snacks? What?

Scott Benner 17:25
Were you able to avoid this turning into an eating disorder?

Morgan 17:30
Um, yeah, for the most part.

Scott Benner 17:33
Good. Okay, that's very cool. It's just, it's already difficult, as you know, you know, I mean, this. It's funny, funny, in an awkward and odd way. But this description of like, every injection is a hill to climb. And you know, something to get over. It's it really is how diabetes is anyway, even without the you don't I mean, even without the pain and the the allergic reaction. So you're adding, I mean, you're just multiplying it, right? It's just, yeah, that's insane. And you were so young for a while. I imagine it got more difficult as you got older and became kind of more self aware. Yeah. 100%. Okay. So when you were younger, you were just doing what you were told. And it hurts. Yeah. Did you ever? Like Jennifer, did she ever tell you? No, she ever just say I'm not doing this?

Jennifer 18:30
Actually, Morgan has been an amazing, you know, diabetic, you know, if you could be one like she, she never complained. Do you know? I mean? Yes, she would tell me, Mom, it hurts. It hurts. I don't want anything to touch it. But yet, she never told me. I don't want to do this anymore. Like, you know, I don't want to have you give me an injection. She was just, you know, okay, this is what we have to do. And I, I've always been one to try and be positive that, you know, I am all for, we're gonna find an answer. We're gonna, you know, we're gonna do this. And then it was also, you know, she, she would ask, you know, why me? And it would be, we're going to have an answer. And we're going to be able to help somebody else. This is, you know, we're going to do this. And so I hope that I was one that never gave up hope for her. You know, if she didn't have it, that I could give it to her.

Scott Benner 19:44
Okay, that's amazing. Can I ask you to be a little more honest? Did you believe it when you were saying it?

Jennifer 19:51
Um, at times, it was difficult. I can't tell you how many times I was crying for her. Um, which, if anybody knows me, I cry over everything I can cry when I'm happy, mad, sad, you know, but it's just one of those things of seeing your child go through something which, you know, you see that with diabetics, you know, I wish I could take this away from my child, but then to see them in constant pain and have no answer. It's, it's very, it's very hard to be positive. But, you know, I've always been determined that I'm going to help her I'm going to find something we're going to do this. So,

Scott Benner 20:43
Morgan, were you aware that this is how your mom felt? Yeah. Did that make you feel bad? Like guilt?

Morgan 20:50
Um, yeah, occasionally. always felt sad or upset with myself, even though I knew I wasn't the one causing her to be hurt.

Scott Benner 21:05
Are you allergic to anything else? Morgan? No, not that we know of even like, you don't get bad hay fever, anything like that at all? I don't think so. No kidding. Wow. Morgan, that's just some I was gonna curse. I'm sorry. We all don't know each other that well, but just some really bad luck. How terrible. Can I ask Dwayne, you have an interesting perspective, because you're not Morgan's natural father, but what's it like to sit back and watch this happen?

Dwayne 21:39
Well, I did work as a pharmacy technician for a long time. So the concept of somebody becoming allergic to something wasn't really new to me. Because everyone's body reacts differently. You know, this person is allergic to penicillin. These people are not, you know, so, you know, I just went into automatic mode and like, Okay, let's try different syringes, different manufacturers, you know, just went through the whole process of what I was trained on when I was a tech, and it's been rough. You know, I, last summer, I went to wake her up, and she's lying on her floor. And you know, that's the first time and she was unresponsive to and so that was really nerve racking. And it's like, I want to help her to make her feel better. And, you know, I keep coming up with ideas. Well, to me, let's try some lidocaine on that spot. We'll see if that helps with with this. You know, try some ibuprofen. Right, so Benadryl, you know, just went through all those steps and just trying to find a way to help ease her discomfort with all this was just, you know, disheartening, because? Nothing. Until recently, have we been able to find that solution?

Scott Benner 23:02
Yeah. Morgan, what were you on? Why are we on the floor? Were you in DK? Um, yeah. Were you not taking your insulin?

Morgan 23:10
Um, no, we had been my blood sugar just got to the point of it not absorbing any of the insulin and getting so high.

Scott Benner 23:19
Oh, from the inflammation at the site, you weren't getting good. Oh, I see. Oh, that's scary.

Dwayne 23:25
That's why she had to move the pump site every day, is because you get that tissue swelling, and just heard your absorption at that spot. So you have to move it to another spot, but then that that slow moving insulin finally hits her system. And so she would go into Ultra lows sometimes after being high, because she gets like a Bolus along with her. The other shot at new site.

Scott Benner 23:50
It's just like a cruel joke. We're gonna I wanted to ask, Oh, God, I had a question for you. I think it might have just fell out of my head. Because that was upsetting. And I'm still recovering from Jen, you almost made me cry about five minutes ago. So I had your voice broke once I'm like, I'm gonna cry. So Oh, my question for you, Morgan is is kind of simple. Maybe you will know the answer. And maybe you won't. But did you? While everybody's working so hard to try to figure this out for you? At what point? I'm guessing you gave up at what point did you just go along passively because they were trying like When did you stop believing anything was ever going to help?

Morgan 24:32
I'm probably after our first time with testing out to see the different area actions to all the different insulins that we had. We had gone to this one allergists and I remember just going to get it tested. And just giving up because the reactions didn't show from how a little mountain diluted They were. And I just remember, quitting I was done

Scott Benner 25:03
just didn't matter. Like, no matter what insulin it was, or how much or how diluted you were having the same reaction at every spot. Yeah. Wow, I'm so sorry. How long ago was that?

Morgan 25:15
Um, two years ago or

Scott Benner 25:19
eight years after this started? Yeah. Well, Morgan, you've got a hell of a college essay. And you, I'll tell you, you're gonna, you're gonna get accepted anywhere you are anywhere you want to go. That's really, it's crazy. So. Okay, so you're seeing a doctor in Dallas, and she hears Sasha on my podcast, and then contacts me and asks me if I can set her up with Sasha. And that all happens. You get a phone call, like an excited phone call from a doctor

Morgan 25:56
or no, like, we go into my appointment, and she's ecstatic. And I have no reason or clue why.

Scott Benner 26:06
Okay, yeah. And she's just like, you're probably like, Listen, lady, this is I hate this place. So why are you? She just told you what, what did she tell you?

Morgan 26:17
Um, that she had listened to your podcast, and gotten in contact with you to get in contact with Sasha. And learned about all this information about what she was going through what they've done and all that stuff.

Scott Benner 26:34
Okay, and were you like,

Morgan 26:38
I was very shocked. Didn't know what to say? Or how to react mainly. Right? I was just surprised to hear that there was someone else having reactions like I was.

Scott Benner 26:50
Yeah. And then did you? Did that make you feel hopeful? Or were you still like, this probably isn't going to work for me.

Morgan 26:57
I was a bit hopeful. Yeah.

Scott Benner 27:00
So So Sasha was doing? Gosh, she was doing that whole, like, getting that insulin from she had like, like a device she had to get from overseas. And it was like a big insurance problem, like this whole thing. Is that what you thought you were going to be doing at that point?

Morgan 27:17
Um, I didn't know what we're going to do. But I knew that there was other opportunities now.

Scott Benner 27:24
Yeah. Okay. I gotcha. So in the end, you're using so I guess, your your Basal insulin, or use your your you still you're still using a Basal insulin? Yes. And, and are you having an allergic reaction to

Morgan 27:40
it? Um, to this one. Now, right now, I'm using what's called receiver. And it's seeming to work pretty well. And I don't seem to react to it.

Scott Benner 27:50
Excellent. And for your meals, what are you doing? I use a Frezza for instance, you are using an inhaled insulin. Okay. Do you like it?

Morgan 28:01
Um, yeah, I mean, it's not painful. Super easy to do. So

Scott Benner 28:06
as soon as I asked if you liked it, Morgan, I was like, that's the worst question I've ever asked on this podcast ever. Obviously, you like it, but I meant, like, was, I guess what I mean, was, was it a big shift from injecting for meals? Like what was the learning curve? Like,

Morgan 28:22
I'm more so learning of when I need to take it, because it reacts a whole lot quicker. But it also gets out of your system a whole lot quicker. Okay. Are you just adjusting to that is?

Scott Benner 28:39
Yeah, well, what about the process of like, how do you I've never had anybody really explained it to me before. I don't think like he just kind of isn't like an inhaler. Like you see people use

Morgan 28:50
Yeah, it's practically just a little inhaler. It comes in set capsules of units. So there's 12 unit, eight unit and four unit. And based on how much you're eating, you'll put in one of the units and then you'll just inhale like you would for asthma,

Scott Benner 29:09
right? Are you experiencing much more stability? I mean, I would imagine you are like a you have more stable blood sugars now? Um, yeah.

Morgan 29:18
For my blood sugars which like always around in like three hundreds and up but from since starting this my blood sugar's normally are a lot lower than that. So

Scott Benner 29:32
can you tell me if you you don't have to share if you don't want to, but like, what was your a one see a year ago and what what is it now?

Morgan 29:40
A year ago, it was like 13. And our latest appointment was like 9.1 or something like that. Wow.

Scott Benner 29:50
You're kind of just learning how to have diabetes, aren't you? Yeah. It just It occurred to me like this whole thing has been it It stopped the process that everybody else goes through of, of, you know, getting over the sadness and learning how to use insulin and you know, that kind of stuff like Pre-Bolus in your meals and all the things that you need to learn to have find stability, and Laurie one sees, and you'd never had you were always in a in a firefight, basically, you never got, you never got to the part where you got to sit down and like think about it.

Morgan 30:24
Not really, yeah, that's amazing.

Scott Benner 30:26
Do you feel better that your agency is lower? 100%? Yeah. Jen, do you see a difference in her personality?

Jennifer 30:35
Yes. You know, first of all, with her agencies, she hated hated going to appointments, because every time we'd go, they'd be like, Okay, we got to work on the same one, see, we got to, you know, do better. And it you know, because of that, they would add more insulin, more insulin. And her ratio used to be where she would get one unit for every three carbs. And, of course, excuse me, her insulin, or her agency just wasn't coming down. She she had, I think, the highest that she had, you know, after diagnosis, her agency was 14. And, you know, it just couldn't have hated that all our work that we were doing was not shown on paper. And all they could see was a onesie 14. You're not doing it here. We

Scott Benner 31:44
no one ever said no one ever said, Hey, there's inflammation here. There's reasons why the insulins not working.

Jennifer 31:50
No, no, no, it wasn't until it wasn't until we, you know, found. Dr. Bonnie McCann Crosby is before that. Nobody, you know, I took dozens of pictures, we'd show them, you know, her injection sites pump site, then it'd be like, Oh, that's bad, okay, but they didn't ever say anything like, oh, this could affect your body, you know, you know, absorbing the insulin. And she'd go, like, at least once a year, she'd be in DKA and had to go to the hospital. And it'd be like, You got to work on your emergency, you got to do more insulin. And it wasn't until we were in the hospital for DKA. And Dr. McCann was the attending physician, and she came in. And of course, I'm like, these are the pictures. This is what's going on. This is you know, and she was one that was okay. Okay. And she had left and Morgan's. Like, I like her. And I was like, Okay, we'll go to her. So we switched over to Dr. McCann. And she was the one that actually looked at these sites. She took pictures she, you know, was genuinely interested in helping us find an answer. And so when we having her a Wednesday be at 9.1 we're ecstatic and I do see a difference in her person every

Dwayne 33:33
time we would go to a doctor or she was in the hospital, you know, they have rotations for rotating shifts and everything we just have any doctor that we were in the room when they came in, say, Oh, by the way, can you look at this, you know, maybe you have a wound care specialist allergist come by take a look at this and try to tell us what's going on here.

Scott Benner 33:50
Yeah, just hoping if you sent it to enough people, someone would recognize it. Right?

Dwayne 33:54
Yeah, someone would come in and go right away. Oh, yeah. It's because of this. It's a little

Scott Benner 33:59
demoralizing that it never happened, isn't it? You know, it's just it's crazy. That Well, I mean, it's rare and all but somebody should have been able to make the leap. You know what I mean?

Dwayne 34:13
And the last time that she was in is when we started for SEMA she tried Lantus lever mirror basil guard and then finally the in the hospital they put her on recibo we're like okay, this one works.

Scott Benner 34:27
So that one so why would imagine just getting on on a Basal insulin that wasn't causing you a problem probably started to bring her a onesie down and and create some stability. You were a CGM Morgan. Yeah, I do. Actually, is that like, before? This was that CGM just basically like depression on a screen for you.

Morgan 34:49
Um, yeah, I wouldn't like looking at it at all. constant reminder that my blood sugar was never worked supposed to be

Scott Benner 34:58
told me if Even though I mean, it's obvious to everybody, and I'm assuming to you as well. And you've said already that this is not your fault, right, but it doesn't stop it from feeling like that, does it?

Morgan 35:11
No, not at all. Okay.

Scott Benner 35:16
You actually, so how long have you been using the is it by the way? I'm sorry? Is it a Frezza? Or is that how they say it? Freeze? Okay, how long have you been using our

Morgan 35:26
Frezza? Um, it will be a year in September

Scott Benner 35:29
year in September. So now you can look at your CGM and start making more thoughtful decisions about using insulin. Yeah, yeah. And a nine. Let me ask you a quick. Do you mind if we talk about management for a second? Do you guys should? Yeah, Jen, you don't actually listen to this podcast, right? No, I do. Okay. All right. So let me ask you a couple of questions about your basil. How much do you take a day?

Morgan 35:55
Um, I take 32 units in the morning and then 56 At night

Scott Benner 36:01
of Joseba. Wow. So you are still pretty? Is that a resistance to the insulin? Have they ever checked you for insulin resistance?

Morgan 36:13
I'm not sure. No,

Scott Benner 36:16
they haven't, they haven't. So 30 to 56. Really. So eight onto I'm I'm mapping over here, which is not my strong suit. Sorry.

Dwayne 36:28
So we just went through around of having her text me whenever she did a Frezza how many units and I would put in the text messages and the time and date. And I built a spreadsheet on that and sent it to document cans office, they looked at her Dexcom stuff from their size, so they can see where she was at, at that time and date and make some adjustments based off of that. Yeah.

Scott Benner 36:55
Hey, overnight. Morgan, do you? Do you sit stable somewhere? Does your blood sugar sit stable? Overnight?

Morgan 37:05
Sometimes

Unknown Speaker 37:07
Do you this morning,

Morgan 37:10
this morning.

Scott Benner 37:12
So the way I talked about using insulin here and basil still Basil is that basil is kind of the most important part, it's the foundation and the building block of your of your management, right. And that away from meals, like you know, so away from meal insulin, which would be a present in your example, and away from active food in your stomach. So once your food is empty, your stomach is empty. If your Basal is doing its job, well, you are stable at the number you mean to be at, which means if you want to be at 100, you should be stable at 100. If you want to be at 90, there's an amount of basil that should hold you stable at 9120, etc. And so it's just very interesting to me. I mean, that's I don't think of insulin as a lot of insulin or a little bit of insulin I think of insulin is you use the amount you need. But performer perspective. I'll just do it. My daughter I think weighs like 135 pounds right now. And she's eight, eight teen, and she gets about a unit of basil through a pump an hour. So she's using about 24 units of basil a day. And it's an hour away from, you know, away from meals and active insulin. Her blood sugar sits pretty stable between 90 and 110. But yours isn't doing that. Is that right? No. So I would listen. I'm not a doctor. I'm actually maybe the farthest thing from one. But I would I would wonder if there isn't. If something's not happening, where you're, you're, you're seeing some resistance to the Joseba Yeah, and I don't know, I don't know what they would do about it, obviously. Because I wouldn't know if it's inflammation from you know, from the other stuff that we've been talking about. Or if you actually have I don't know, like, I mean, I know you're definitely type one. I'm not saying that but I wonder if you have insulin resistance on top of it or what's your diet like for the course of the day?

Morgan 39:13
I don't normally eat breakfast right now, um, lunch? Normally it kind of varies not very much than either and then dinner it's kind of a lot more

Scott Benner 39:30
Yeah, but nothing like you're not eating like like I don't know you're not having potatoes with rice and a cheeseburger like like you know like you're not taking in like like a like a ton of carbs a day. No no okay, but super interesting. Wow, okay. He caught me by surprise when you said when you gave me this receiver number it caught me by surprise. It's not that not bad. You understand what I mean? Like it just Yeah, it was more it was just more than I expect you to say. I think maybe Are you embody in conversations about this?

Morgan 40:07
Yeah. We're constantly going back and forth, or emails changing and tweaking intake for it and stuff.

Scott Benner 40:15
So let me ask you a question. If your blood sugar was sitting at like, let's just say 200. Right? And you haven't eaten in a couple of hours, you're just looking at a higher blood sugar. If you take the A Frieza a Frezza. Oh my God, why can I say it? If, if you do that, and say you drive that 200? Down to 100? Right? You correct that number? Yeah. Does it float back up again? Or does it stay down there?

Morgan 40:40
Um, normally floats back up.

Scott Benner 40:42
Yeah, that's basil. That so that's, that's, that's a weakness in the basil. Yeah, that's interesting. I don't know. I'm sorry. I don't obviously know how you're gonna get that accomplished and worked on but that I think that's your goal. I think if you figure that piece out, I think that nine a one C turns into a six a one say? Yeah, you know, oh, are you excited that that might happen?

Morgan 41:06
Um, yeah. We're always excited when it gets down.

Scott Benner 41:11
This is such a, this is a such a, an amazingly uncommonly happy story at the end. I mean, it took forever for you to get to it. But I mean, you really were in a position where you didn't think this was going to work out. And it just did. Do you ever have sadness that it took, like that, that a freeze have existed before this? And you didn't know?

Morgan 41:34
Occasionally? Yeah, it's hard. Not this gets you down thinking how many years you've dealt with this? And it could have been fixed. You're known?

Scott Benner 41:43
No, I hear you.

Dwayne 41:45
is expensive. It's, you know, FDA approved for 18 years of age and higher. So the manufacturer card because the doctor really prescribing this off label doesn't offer doesn't the savings card doesn't work at the pharmacy for her. So, you know, it's one month supply for her. It's a couple of grand Wow, during the ductable season, so as that's not not going to be for everyone.

Scott Benner 42:11
Right? Yeah. Hey, Morgan, hurry up and get to be 18. Yeah, did you ever try contacting the company directly?

Dwayne 42:22
And tell I know Dr. McCann contacted them talk to I think their medical director and stuff and because she was under 18. She wanted to talk with him about any risks associated with it but haven't talked with. We haven't reached out to them and talk to him about getting any assistance yet.

Scott Benner 42:41
Well, Morgan, I would think you would be a perfect candidate to be a sponsor of of that insulin. For sure. Your your your story is a is. I mean, your story is that that insulin was your only saving grace. Yeah, you know, like that one simple thing. You know, that company almost stopped making it a few years ago. Isn't that crazy? Like they had not imagined? Yeah, wow. Oh, I just thought of that. Give me chills. Okay. All right. So, okay, more than other questions. What do you enjoy doing? What do you think about going to college for that kind of stuff.

Morgan 43:17
Um, I like working with kids. That's what I do. Mainly a lot. I work at a daycare, actually, and work with preschoolers at school for one of my classes. I'm really good at math. And I'm dance to that and probably will go into mathematics for college.

Scott Benner 43:36
Do you think you'll do education? Or do you think you'll go? Possibly? You don't want to be a math teacher? Is that what you're thinking?

Morgan 43:45
It depends on the grade.

Scott Benner 43:49
What how, what age of child do you imagine would be the best to teach math though?

Morgan 43:56
Um, probably third grade. Yeah, cuz that's when they're learning multiplication. And it's still like it's honest.

Scott Benner 44:04
Yeah, it's a good age for kids. So they're kind of I don't know like you don't realize it till you see it but they're like they're they have enough like common sense that not be complete lunatics and they haven't been hit with all those hormones yet, so they're kind of nice. Yeah, right. Jen. Remember when the kids were nice? Well, this is amazing. Is there anything I'm not asking you that I should be like if I miss something about this story?

Morgan 44:31
Oh, not put a No I did. Okay.

Scott Benner 44:35
Jen, how about you? Can I Can I ask a year after this happened now? Is there been a an increase in your in your mental health like has this been a relief? That's hard to put into words? Yeah. Yeah,

Morgan 44:51
definitely. Definitely have a whole lot more motivation to do things. Before you. It was hard. Hard to do things because they felt like there wasn't a point because at some point, you know that your body is just gonna give out. But now with having more energy and my body actually accepting the insulin, I feel like I'm able to do a whole lot more.

Scott Benner 45:16
Yeah, Jim was there ever in your head that this high a one C was going to, like, hurt her and other ways, at some point. Excuse me.

Jennifer 45:28
So, you know, it just frustrating that you kept seeing it going up. And but, you know, she'd go into DKA. And, and every time that she was in DKA, you know, she was responsive, she wasn't feeling good. She went in, you know, but last year was, was the scariest. And, you know, seeing your child lay on the floor unresponsive and having the paramedics come in to get her and having to do a CT scan to make sure that her brain is okay. And going into the hospital room. And she is completely out of it does not know where she's at, and is trying to take off her, you know, her IV 's and stuff because she's wanting to get out of bed. And it just is, you know, a moment that I will never forget. And hopefully we'll never have to go through again,

Scott Benner 46:41
doesn't sound like you're going to have to, and it's good.

Dwayne 46:45
And in the last year, you know, when she started at Frezza. She went into clinic, we have the allergies there in Dr. McCain's office as well. They get a chest X ray just so they have a baseline in case of presence starts having any impact in their lungs. We go to Texas Children's Hospital, which is great as five minutes up the road. She's seen a cardiologist and kidney doctor just get a baseline on some of her systems to make sure that you know, diabetes doesn't start to impact those.

Scott Benner 47:22
Yeah, it's really interesting actually turn the way you answered my question. Because I and I'm not trust me, I'm not being critical. I was trying to lead you into thinking about long term complications about diabetes, but you're so mired down in this fight, I think that you can, you don't have the bandwidth to look deeper than what's happening right in this moment. And and that became really evident when you were answering the question, I thought, wow, like, there's this poor family, their situation is so immediate and constant, you guys, you don't have the luxury of thinking a month away. And, and now you do all of a sudden, is that, that that that must be a pretty nice change, I would imagine

Jennifer 48:06
that it is a nice change. And also like, so I'm in the middle of getting my master's program, or getting my master's in social work. And, you know, just this last semester, I had some amazing things, you know, even happened just recently because I was looking for research, and came across an article about a boy who was allergic to insulin. And I reached out to the author and asked him to, you know, forward the email on to the mom in hopes that she would contact me. And she did. And they they have a Facebook group is called insulin allergy and hypersensitivity awareness. And in there, there is a group of seven moms, all with kids who have allergic reactions to insulin. And it was just another thing of Oh, my goodness, okay. She's not alone. She's not alone.

Scott Benner 49:25
Right? Whether it's, I'm sorry, whether it's seven people or 7000 people, it's such a big deal to know you're not by yourself.

Jennifer 49:33
Right? Yeah. And that's what I kept telling them. I'm like, Oh my gosh, we're not alone. We're not alone. You know, you wouldn't wish it on anybody. But I am so thankful that we have now come into a community that completely understand. And so you know, that is one of my main goals with getting my master's degree is I just want to be able to help Morgan you know, the best way I can. But then to be able to help others who, you know, come into this life of feeling alone.

Dwayne 50:16
Yeah, I The reactions are the same across the board. I mean, Sasha, who was on your other podcast, she said that I believe that the insulin was eating away at the tissue of her skin Morgan gets bruised and redness and pain. Another one Jen was telling me about from this new Facebook group that she found was as like a BS thing where it gets raised and read and painful. So these reactions are carbon copy, right? You need to these fake these patients, these kids yeah,

Scott Benner 50:48
it's insane. Like Jen have those other people tried a Frezza.

Jennifer 50:54
So other ones they have not. I know that one of the patients. She was, you know, whenever she tried a Piedra, she would stop breathing. And so they have not tried a Frezza. You know, so and I think that they're all younger patients. They are now all younger than more than the oldest one turns 18 in March. So Morgan is now the oldest of this group. And so, you know, with FDA, you know, not having a friend approved for under 18. I don't think any of them have tried. I

Scott Benner 51:37
say well, okay. Hey, Morgan, are you do you know, Sasha? zyk? You guys hook up online and meet?

Morgan 51:43
Um, no, not personally.

Scott Benner 51:47
So, listen, as we wrap up here, I just want to tell you more than I know, my name is not great, Scott. It's kind of like it's not a great name. I've lived with it my whole life. But I do feel like if you have a baby ever one day, like I should get some fairly strong consideration for baby names. Do not think big. But I wanted to, I wanted to seriously tell you just kind of like to put some perspective in this for you. You're almost 18. And eight years ago, when you were 10. I started this podcast. But back in 2007, I started writing a blog a year after my daughter was diagnosed. I wrote that blog for years, I eventually started a podcast. And my idea was much like what your mom is talking about with with what she's working on, as I just really wanted to help people. And at some point, it became very obvious that I really understood how to use insulin, and that my daughter's outcomes were very repeatable, and that I could explain it to other people, and then they could have those outcomes. And then the podcast sort of just grew from there. Like, I'm just sitting in an extra room in my house right now. And, and I made a thing. I don't know, in 2007, that turned into a different thing in 2015, that in 2021, led you to find somebody who helped you with your thing, like it's, it's kind of magical and almost hard to believe, you know what I mean? Like, it's, it's crazy. What year were you diagnosed?

Morgan 53:20
Um, 2012 2012

Scott Benner 53:23
Wow. So six years after my daughter was diagnosed, you got diabetes. And I started a blog because I was trying to raise money for the JDRF. And I could I was having no trouble raise. I was having no luck raising money. So I started writing to people, and in like, this kind of email thing. And then I realized that was bothering them. And I found Morgan, this is gonna sound particularly odd to you because you're young. But I found a program that let me put my words on the internet and make a make a blog, which was not a thing back in 2007. Really? And all these years later, you don't have sores on your body anymore. is very cool. I don't know. I'm very excited. I'm I'm proud of you. And if I'm being honest, Morgan, I'm a tiny bit proud of myself right now. And I'm looking for just even if you buy a dog, and you name it, Scott, I think that would be appropriate.

Morgan 54:17
Okay, totally. I got you. Thank you audit. My pets. Yeah, you

Scott Benner 54:21
know what I'm saying? Like nothing big and you take a picture of it, you send it to me go look at Scott. Even if it's ugly, it's fine with me. I don't care. Really. You guys are terrific. I really can't thank you enough for taking the time to do this. Especially coming up on a holiday weekend. But your story is amazing. I do want to just make sure one more time. Like I didn't miss anything, right? No, you feel good about this. Yeah, I feel really great about I'm super excited for you, Morgan. I can't. I mean, as you're talking, as all of you are talking, I am sitting here thinking like this poor girl's life must have been drudgery. Like just wake up have every morning and just drag your ass through another bad day. And now I just, I just feel like you, the last year of your life has probably felt like, like heavenly, you know, you have a lot of perspective for a person your age, it's gonna serve you well as you as you become an adult. Do you ever feel like that around the other kids? Do you ever look at them and think I know more about the world than they do?

Morgan 55:25
Um, occasionally, especially my peers, you can just tell if some of them

Scott Benner 55:30
haven't been through anything, right? Yeah. Do you have that feeling? Like there's nothing you can't do?

Morgan 55:37
I'm sometimes

Scott Benner 55:40
may I say something, we don't know each other. But you should feel like that. You've been through a lot more than most people go through in their entire life. And, and you're on the other side of it now. So you have this, you have this perspective, like you know about before, and you know about now and now's better. So, you know, you don't need my advice, but anything's possible. You can just dream it and do it. And it'll happen. You know what I mean? Yeah, that's so cool. All right. Well, thank you guys so much, Jen. I really appreciate you doing this. You sounded so nervous in the beginning. Are you okay? Now, Jim?

Jennifer 56:16
You know, I was nervous. And, you know, it's the whole thing of Oh, my goodness, we're actually getting our story out there. You know, we haven't been able to have, you know, major platform to do that. It's always just been in the moment, whoever doctor is in front of us. Look at this, please help us. You know, so it. Yeah, nervous, but I'm so grateful that we were able to come

Scott Benner 56:46
on. No, I appreciate it very much. I mean, in my mind, Sasha story, reach Morgan Morgan story could reach somebody else. And at the very least, if it can't find another person who's going through what Morgan was going through, I think it should serve very well to let let the other people listening, reset their level of gratitude. You know what I mean? Because this is, because Morgan, you got way more than your fair share of both. So, you know, everybody else, I think, will listen to your story and feel pretty lucky today. And I'm just super happy for your kid. Like, I am so excited that this worked out for you. Congratulations. Seriously, go learn some math and maths. Good. Morgan. That's a good thing. Yeah.

Morgan 57:30
I'm excited for you taking calculus. So, Dwayne, you

Scott Benner 57:34
sound like a good dude. Man. That's a that's a lot of kids over there.

Dwayne 57:39
Yeah. Scott, if you're if you're curious, we did look up a Frezza on YouTube. And the company does have video on there and how it's used and everything else and what the equivalents are between the inhaled and versus the liquid insulin. So, you know, check that out.

Scott Benner 57:56
Yeah, let other people find it and take a look. That's amazing. All right. All right, everybody, thank you so much.

Well, I'd like to thank Morgan and her mom and her dad for coming on the show today and sharing her story. I'd also like to thank our Frezza for existing and help him Morgan out. You guys want to help her, contact me, and I'll put you in touch with her. And if you guys want to buy some ads, I've got a podcast all about diabetes, you should give me a call. Speaking of ads, thanks so much to touched by type one for sponsoring this episode of The Juicebox Podcast touch by type one.org. And of course the Contour Next One blood glucose meter. Go check it out right now at contour next one.com forward slash juicebox links to the sponsors. And all the sponsors are in the show notes of your podcast player, and at juicebox podcast.com. If you're looking for community around your diabetes, look no farther than the Juicebox Podcast type one diabetes Facebook group. It has people with all kinds of the diabetes in there. Don't worry, not just type one, but lotta type two gestational 25,000 members. All in they're talking about something that you'd be interested in getting involved in, checking on or maybe just lurking around. I mean, just be like, see what people are saying about how they adjust their Basal insulin or Bolus for pizza, that kind of stuff. Juicebox Podcast, type one diabetes on Facebook. It's a terrific group. It's a private group. So you have to answer a couple of questions to get in. But after you do that, I think you're gonna like it there. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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