#1475 Surviving on Spite

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Keri, 43, has lived with T1D since childhood and opens up about how her brother’s early death shaped her life.

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Scott Benner 00:00 Hello friends and welcome back to another episode of The Juicebox Podcast. Carrie's had type one diabetes since she was a child. She lost her brother early in her life. It had an incredible effect on her and her family. We're going to talk about that today and much more. 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. AG, one is offering my listeners a free $76 gift. When you sign up, you'll get a welcome kit, a bottle of d3, k2, and five free travel packs in your first box. So make sure you check out drink AG, one.com/juice box. To get this offer, don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com. Are you an adult living with type one or the caregiver of someone who is and a US resident? If you are, I'd love it if you would go to T 1d, exchange.org/juice box and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa, this is the way t 1d exchange.org/juice box. It should not take you more than about 10 minutes. This episode is sponsored by the tandem Moby system, which is powered by tandems, newest algorithm control iq plus technology. Tandem mobi has a predictive algorithm that helps prevent highs and lows, and is now available for ages two and up. Learn more and get started today at tandem diabetes.com/juice box. This episode of the juice box podcast is sponsored by us Med, us, med.com/juice, box, or call 888-721-1514, get your supplies the same way we do from us med.

Carrie 02:21 My name is Carrie. I have been a type one diabetic for 37 years. I have acquired several other auto immune diseases. We don't talk a lot about the mental load of this, and then outside forces as well. So this, I guess, kind of is mostly about grief and how I handled that with my diabetes and all those other things. So,

Scott Benner 02:42 yeah, hey, way to front load the episode in a way that will challenge people to listen. Today we're going to be talking about grief. Wa you've been collecting autoimmune things like knick knacks or what do you mean? Pretty

Carrie 02:55 much. So I got my type one when I was six. No family history of type one anywhere, and then it just kind of snowballed from there. I didn't know at the time, but I started taking thyroid meds when I was probably 12. And now I guess if we write them all down, I have seven auto immune diseases

Scott Benner 03:15 though. Wow. Can we list them? Yes, type

Carrie 03:19 one, thyroid disease, scleroderma, I have gastroparesis. They don't know if it's from the Scleroderma, if it presents itself that way, if it's from the type one, celiac disease, Raynaud's erythromyalgia, which is fun, because it's the opposite of Raynaud. So I have both of those. I

Scott Benner 03:40 don't know the I think you got the seven, but what was the last one? Erythromyalgia.

Carrie 03:44 So brain nods. Are you familiar with that? At all? Cold

Scott Benner 03:49 fingertips, blue skin, that kind of thing, right? So I have that,

Carrie 03:53 and then I have the flip side of that, which is, and it affects me, mostly my feet, but it's like burning.

Scott Benner 04:00 So actual warm.

Carrie 04:03 It just feels like it, and it's not a nerve thing, like, as in, you know, diabetes related, anything like that. It's just another autoimmune thing.

Scott Benner 04:14 Carrie, if you touch your cold hands to your warm feet, they don't balance out, right? Wouldn't that be wouldn't that be crazy

Carrie 04:20 awesome? Like, hold on, let me take my shoes off. I got this. But how crazy

Scott Benner 04:25 would it be if they did work that way and yet you got one in your feet and one in your hands instead of both in your hands, which would have been awesome, right? Right? We're making things up now. Also, this episode is going to, I hope my daughter doesn't hear this one, because, oh no, I can't say Carrie. Oh, comfortably, doing fine. No, you think I am but my brain yells at me when I like I want to say curry, oh, and then when I start saying Carrie, it sounds like Carrie. I have a lot of problems with this thing. Just if I mess up, I'm sorry differently

Carrie 04:58 too. So I. It's, it's spelled K, E, R, I. So that's maybe that helps, or maybe what makes it worse?

Scott Benner 05:04 I'm going to use the shampoo commercial. There you go. I'm going to go because my is it lotion? Like Carrie is so very So,

Carrie 05:11 yes, I think it was lotion. All right. I don't know if it exists anymore. I

Scott Benner 05:15 apologize to people if I end up saying your name 17 different ways, I'm it's not. You're fine. I have an actual affliction. I just want to say that. Okay, so do you get these things, like Christmas presents, like year after year? Do they all come at once? How does that happen?

Carrie 05:30 Well, for the longest time, and this is probably another thing I could talk about, forever, I've been very in tune with my body, because it started at such a young age that I've just obsessively paid attention to how I feel whenever I would go to the doctor, because I'd be like, well, something's not right. And, of course, I'm a child, so I can't really articulate what I'm I just don't feel right, you know. Well, how's your diabetes? Every single time, right? It's fine. That's this is different than this, well, but is it? You wouldn't know, because, you know, I mean, just constant of, well, how, how are your blood sugars? They're fine. But this isn't what I'm talking about, you know, so it's, it was hard to pick a point that, I mean, it took my most recent diagnoses, I guess, was in my late 30s. I'm 43 if that matters. But it just took me a very long time to find doctors that listened and actually were like, Okay, we're gonna try to figure this out. The Diabetes was six and then, like I said, the thyroid probably 12 ish. And then I kind of just was okay with the fact that this was how I'd feel for a very long time. I found out I had celiac disease when I was, let's see, 24 but obviously I'd had it for much longer than that, yeah, then it kind of just snowballed, I guess I after I had my son, everything kind of just really amped itself up.

Scott Benner 06:52 Your body kind of took a big shift after that. Yep, yep. Auto immune. Feeling more aggressive. Is that a fair way to say it, yeah, yeah, okay. Well, fun times. What would you say that your overall attitude is, after living like this for a while, do you feel beaten and just like I just keep going? Or are you one of those optimistic people, like, where the optimism never stops? Do you how does it feel to you, in your mind? Well,

Carrie 07:19 I think it has to be both, right? I mean, we all have to, we all, I think, regardless of your health or if it's work or family related, whatever, you get to a point where like man, like this is enough for right now, you know? And so I'm, I guess I'm kind of used to feeling exhausted and run down, and I try to be a positive, optimistic person, so I think that does help in my favor, but I also then kind of put up with a lot or like, well, this is fine. I don't feel great, but it's fine. And I think part of that, too was a lot of, you know, the doctors that I would see, and they'd be like, well, you're fine, you know, I'm like, well, but could we just look a little deeper, you know, could we just maybe I am fine, but let's just, you know. So

Scott Benner 08:04 do you think they were putting you off pretending like or saying to themselves like she doesn't really know because she's young? Or do you think they didn't know how to help you so they go, don't worry about it. It's gonna be okay, kid. Do you have an idea diabetes comes with a lot of things to remember, so it's nice when someone takes something off of your plate. Us. Med has done that for us. When it's time for Arden supplies to be refreshed, we get an email rolls up and in your inbox says, Hi, Arden, this is your friendly reorder email from us med. You open up the email, it's a big button that says, Click here to reorder, and you're done. Finally, somebody taking away a responsibility instead of adding one. US med has done that for us. An email arrives, we click on a link, and the next thing you know, your products are at the front door. That simple. US med.com/juice, box, or call 8887211, 888-721-1514, I never have to wonder if Arden has enough supplies. I click on one link, I open up a box, I put this stuff in the drawer, and we're done. Us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and the Dexcom g7 they accept Medicare nationwide, over 800 private insurers, and all you have to do to get started is call 888-721-1514. Or go to my link, us, med.com/juice, box. Using that number or my link helps to support the production of the Juicebox Podcast, let's talk about the tandem Moby insulin pump from today's sponsor tandem diabetes care, their newest algorithm control iq plus technology and the new tandem Moby pump offer you unique opportunities to have better control. It's the only system with auto Bolus that helps with Miss. Meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options. Tandem Moby gives you more discretion, freedom and options for how to manage your diabetes. This is their best algorithm ever, and they'd like you to check it out at tandem diabetes.com/juice box. When you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's going to help you learn about tandems, tiny pump that's big on control tandem diabetes.com/juice box. The tandem Moby system is available for people ages two and up, who want an automated delivery system to help them sleep better, wake up in range and address high blood sugars with auto Bolus

Carrie 10:48 again, I think that was also both I have had. Let me see four or five endocrinologists throughout this time, and one of them, I had a nickname for him that wasn't, I don't, I honestly couldn't even tell you his actual name, because we just really did not get along. What did you call him? Well, I called him Dr dick. And I was, you know, a teen, 15 through, I don't know, maybe 18 or so. And I say this, having lots of experiences with doctors, he just his ego, was just the forefront of his personality. And maybe that's not fair, but he just I wasn't doing what he was telling me, according to him, and there couldn't be any other explanation, except that I just wasn't doing what he was saying I should be doing. And that's why I was having trouble, and that's why, you know, my diabetes was the way that it was, etc. Carrie,

Scott Benner 11:44 hindsight, was it a fair breakdown of who he was?

Carrie 11:49 I think so. Yeah, okay, yeah. Because it wasn't just my parents also were like, wow. Like it was, and I understand there are different, you know, ways to doctor, but it was kind of just like the bullying aspect of it, like, I'm just gonna scare the shit out of you and yell at you, and then that will fix this, because I don't know what else to try. Basically, is how I felt now that I look back on it as an adult,

Scott Benner 12:11 Yeah, that sucks. It really does. It's terrible. It

Carrie 12:15 wasn't great, because then, of course, I'm also, like, a hugely stubborn person, so I was just like, Okay, well, you know, made

Scott Benner 12:22 it work. So you were in embroiled in a battle with him, yes, yes, because you didn't back down, and he didn't stop being himself,

Carrie 12:29 right, any and then the part of it was, you know, I'm like, Well, I'm doing, I'm trying to do, you know, what I'm supposed to be doing. It's not working. There has to be some, you know, logically, even at that age, I was like, there has to be, like, a reason this. I'm so quote difficult, you know. And then it was, you know, my thyroid meds were never right. And then finally, as an adult, after I had let me see I was probably 2423 or 24 my endocrinologist that I had then was like, you were taking four times the amount of thyroid meds you should, for someone your sides. So he was the one, even though I was seeing a gastroenterologist that was like, You need a biopsy, like you're not absorbing something for some reason. And so he's the one that actually pushed and found out that I had celiac disease. I

Scott Benner 13:18 was gonna say the celiac was stopping your thyroid medication from being absorbed somehow.

Carrie 13:23 Yep. And then I found out later that it had gluten in it. Oh,

Scott Benner 13:27 yeah, you can need to use, what do you use? The Tyro scent now, right, right.

Carrie 13:31 Well, now I have to, because my insurance is super fun. They make they deny it every year, and then they switch me to the level of thyroxine and the tyrosine, because theirs are guaranteed gluten free? Yeah, yep, good, good for you. Because another thing was like, Well, no, there's, you're you're eating it. You're getting it from somewhere. Like, no, I'm really not, like, I'm not doing that.

Scott Benner 13:51 So you're taking what felt like a handful of, like Synthroid, but it had gluten in it, and then it was right causing inflammation, and then not absorbing. And then they were throwing in more, which is causing more inflammation, is that about, right?

Carrie 14:02 Yes. And the other shocking thing about that time period was, I'm almost five seven. I like to give myself that little extra quarter of an inch. I'm okay saying you're five seven. Keep going, yep. And I weighed 92 pounds, oh. And so then it was my heart was, you know, beating too fast, working too hard, because I was anorexic, you know, which, again, like, nope, not doing that myself. Like everyone's seeing me eat. I don't. I'm I don't have an eating disorder. Well, it was a celiac disease. Yeah,

Scott Benner 14:35 so you're thin, and your doctor just says you're anorexic, like, like, and you say, No, I swear to God, I'm eating and then that, like doesn't stop that.

Carrie 14:45 Yep, you're not eating your and I rudely remember being so then they had me see a cardiologist, because my heart was my, my resting heart rate was like 120 dumping away. Yeah. The nurse was like, yelling. Me, you know, why are you doing this to yourself? You're anorexic, you have an eating disorder, and I'm just like, Okay, here we go again. Like, no one's listening to me. I'm not doing this to myself. So God bless that endocrinologist that finally was like, something is not right. Like,

Scott Benner 15:14 yeah, they could look past what they saw right in front of their face and could think about a little bit. Geez. It sucks. Yeah. And what do you do? Right? Because you have so many competing issues that, like, things are probably masking other things and causing problems they don't normally see. They don't know what to do, and then they default to what they most frequently seeing, right? Yeah, okay, yep, you pissed about that when you look back. Oh yeah,

Carrie 15:40 yeah. Well, and to throw in another aspect of this, I realize this isn't going to sound real to most people. So all of this is going on when I was 14. My older brother passed away. We're dealing with all these things, you know, health wise, and then, like, the worst thing that can happen happens. And so then it's like, well, then we need to work on, focus on her mental health. But then, you know, I mean, it's just everything compounded everything else. And I was angry, you know, like, at that point, I was like, this fucking sucks. Like, what is happening?

Scott Benner 16:12 Yeah, Jesus. How many siblings did you have? I

Carrie 16:15 have two half siblings that I do not have relationship with. So he was my my sibling, my brother, so I just, just the one, and you're

Scott Benner 16:24 14 and he's how old when he's when he passes away, is it? Yeah. I mean, it's a long time ago, but was it a sudden, accidental thing? Was it?

Carrie 16:33 Yep, and so that's the other thing. I'm happy to talk about this, because I think people need to be more open and honest about things. He did meth, oh gosh, and he collapsed at prom. No

Scott Benner 16:46 kidding, at his senior prom, he died from a he odido, meth, yep, yep, damn, Jesus Christ.

Carrie 16:52 And he was a junior, but, Oh, yep, she's my

Scott Benner 16:56 god. Well, what does that do to the family? And I bet you it takes the focus off of your health for a while. Well,

Carrie 17:02 it does for a second, okay? And then I am the hyper fixation, right? Because I'm the one that's left, okay, which I completely understand. And here's the thing, the way that I thought about it, as a child, I was the one that had, you know, been told my entire life, I will die first, right?

Scott Benner 17:22 Well, people said, Well, hold on a second. People said that to you, basically

Carrie 17:26 like, This isn't good. I was diagnosed in 1987 so, all right, no one else that I knew was type one. No one in our community was type one. You knew about older people that were, you know, type two and that typical, well, my grandpa died from, you know, the thing that you hear all the time, or my grandma or her cat, or whatever, my grandma's

Scott Benner 17:46 cat had diabetes, right?

Carrie 17:49 Yeah. And I remember, you know, at a very young age being told you can't have children. This is going to be, you know, like all of these things. So it was kind of just ingrained in my head how I process everything that like I would be the one that died first. That was just my lot in life.

Scott Benner 18:07 Okay, so I'm picturing your brother passes for a hot second. Everybody's, you know, distracted, obviously, but then you're saying, See, I thought you were gonna say, then your parents started to focus on you, because they're like, we can't let this one die. And no, they did. That's exactly what they did. I thought you were gonna I thought you were telling me that you had this guilt, like you were the only one left, so you had to keep doing better. So how did that all shake out?

Carrie 18:32 And that was probably, again, probably both things were true. And I don't know that they fixated on my health, necessarily. And again, to be completely fair, everybody was just trying to survive, right? Like, this was a huge blow that happened out of nowhere, and it was a shock, and it was devastating, and everybody was just trying to, you know, put one foot in front of the other. Can

Scott Benner 18:58 you talk more about that? Please? Like, what does it do? Does it completely reshape everything? Does the world feel numb the whole time? Like, how long did that last?

Carrie 19:09 It was such a shock. And I mean, I can explain the entire thing. It was just, it was so bizarre and so alarming. I don't think it was handled well in the sense that, like so we lived in a small community. Everybody heard about it, of course, right away and had their opinions. Like, what was his name? The talk show host

Scott Benner 19:32 Maury Povich, Montel

Carrie 19:33 Montel Williams, called our house. Are you serious? To be on the show. I quit watching the news at 14 years old because there were people outside of our high school trying to talk to everybody, and the news articles were terrible. You know, just all of these things that all of a sudden you're like, Oh, the world is not like. I don't want to say that I was naive, but I do tend to see the best in people, or look for it, I guess, yeah. And. That was just like, pulled out from underneath me, right? Because I'm like, this is awful, yeah. So

Scott Benner 20:04 your brother's death becomes like a news cycle thing, because what meth is a popular thing in the news probably well,

Carrie 20:11 and like, we were from a quote, you know, wealthy or well off family, and, you know, they talked about in the articles what kind of car he drove, and all these things, you know, and it's just like, Oh

Scott Benner 20:23 no, kidding. So I don't care about what kind of car you're, you're, of course not. Who does you're telling me that the news would be like this 17 year old high school student died from a meth o day, and he drove a BMW. Can you believe it? It's happening to white people? Is that what they were doing?

Carrie 20:38 Funniest thing is, he did drive a BMW. It was an old Fitty used BMW that he just loved.

Scott Benner 20:44 Oh, yes. So he has a crappy used car like every other 17 year old kid, but it happens to be a BMW, so they try to couch it like this. Look what happened this wealthy kids, wealthy Yes, yeah. And that interesting. And so now this is happening all around you. Your parents are dealing with it. Neighbors have, oh, you said everyone had an opinion, which means everyone was talking,

Carrie 21:03 right, all right, okay, yeah, I'm sorry. I'm I tell stories, not literally, not linear. You're doing fine. Don't, don't worry about so what happened is my parents were gone. I get a call, and it's, of course, my PE teacher as well. She's calling from the prom, and she's frantic, because I don't know this, but my brother has collapsed, and she's asking for my parents, and they're not home. So I give her the phone number to where they are, but I know that something is, like, horribly wrong. I back out the car. They come home, we go to the hospital. They Life Flight him to, like, the biggest, you know, hospital they can get him to. He passes there, the doctor has me go in and see him, and they haven't. His eyes are open. He still has, like, tubes coming out of his like, I think that they were trying to, like, scare me out of I don't even know, you know, and again, I'm 14 years old. I have no idea what's happening. I don't know what meth is. I don't know like, I was a naive, you know, sheltered kid. I guess you could say that's how that was handled, which I can't again, I have a, I have a 17 year old son now, and I can't imagine choosing to like, be like, hey, here. This is your reality. I'm gonna, like, hit you in your face with a brick of it, and this is what this looks like.

Scott Benner 22:27 Your brother's dead, and if you're not careful, Matthew, it's gonna happen to you too, right,

Carrie 22:31 right. Look at what you're look at what's gonna happen, you know, like, Okay, well, this happened

Scott Benner 22:37 something that stuck with you your whole life, psychologically, I imagine, of course,

Carrie 22:41 of course, for the longest time, when I would close my eyes, I would see that it's a, you know, it's a visual that's burned into your brain, of course. So, yeah,

Scott Benner 22:50 my God, I'm sorry, that's, I mean, I don't know why everybody's so stupid,

Carrie 22:55 but yeah, yeah, yeah. I

Scott Benner 22:59 can't believe somebody thought that was the way to go. Had you shown any propensity for drug use? Nope,

Carrie 23:06 sure. Hadn't. Okay. I was the person that Well, I guess not at that age, because only 14, but I drove everyone around. I made sure everybody got home safe, you know, yeah, yeah. I didn't do any of those things. So insane, yep.

Scott Benner 23:19 Okay, so then everyone comes their head comes up above water, and now suddenly, keeping Carrie alive is the most important thing in the world.

Carrie 23:27 Absolutely. Yep, she's, she's the one that's left, and she's been sick her whole life, and we need to, you know. And to be fair, I understand that, you know. I understand the sure hyper fixation and the needing to know literally every single detail because of the one thing that we didn't know. You know, then my brother died. So logically, I understand it. But again, also, I'm 14, just about to turn 15 at this age, and, you know, teenagers are super fun anyway, so Well, yeah, you're in a

Scott Benner 24:01 precarious time as a young girl, and things are happening. This is going on. You have diabetes, etc and so on, and now suddenly you're hyper focused on so you are being helicopter parented, not only by your parents, but probably by yourself. And right? What does that lead

Carrie 24:17 to? Well, it's the first time that I dealt with anxiety and not understanding what it was, and I will I found this out recently, later, with more loss and grief, that my depression, I guess, shows up more as like anxiety and panic attacks. And like I said, Before, I was very focused on like I knew when my body didn't feel right, and so not understanding what anxiety feels like or is, or what panic attacks are, I thought I was dying, okay, you know, the first few times that happened to me, I thought, well, this is when I die, you know, which, of course, is now what was happening. But if I still feel that way, sometimes, if I have panic attacks like, Oh, this is it, you know, and it's just your brain. Train. It's an alert, obviously, be like things are not okay. But also, when you're so focused on your health for such a long time, and how that feels, you're like, Oh, this is it. It was difficult to say the least. Do

Scott Benner 25:12 they get you with all this focus on taking care of you? Do they get you any mental health

Carrie 25:16 care? So they tried. I will never forget this either I again, not something that I had dealt with. Hadn't, you know, it wasn't a big thing. Again, this was 1996 nobody talked about their mental health. They took me, I think, to a regular doctor, just because, like, carries upset. Well, of course, she is. They referred them to take me to, you know, a psychiatrist, psychologist somewhere. And the first question, I had to fill up paperwork, and the first question was basically asking if I like to harm animals, okay?

Scott Benner 25:46 And just for matter, of course, do you, of

Carrie 25:52 course not? Okay, go ahead, Nope. Can't run over something that's already been ran over. Like, that's, you know, I am horrified, and from my parents, and they're, like, instantly angry and like, took me out of there, so that was it.

Scott Benner 26:05 My God, I don't understand. Okay, so you didn't go back for mental health care because it started off so kind of harshly, you feel like you had depression that showed itself as, like, panic attacks and anxiety. Is that right? Yep, was that medicated any point or something that you work through in a different way, once the therapy wasn't the road for you,

Carrie 26:25 it was not medicated. And then again, I found out later, after I had my son, I had post partum really bad, and they tried to medicate me for that, and it made it so much worse. So my body does not handle those kinds of medications. Well. I know that when I'm having an instance of where that's happening, obviously it's a mental game, and I have to tell myself that this is what's happening, and it's okay, you know, everything is fine. But I think at that age, you know, I was 15, then I processed through writing and art and things like that. That helped me at that time, but never medicated. No.

Scott Benner 27:01 Okay, so art like taking your mind off things like going to another place in your mind, like that kind of idea.

Carrie 27:07 I wrote poems a lot. I would write my brother letters, you know, just things like that. Just that's how I talked through things. Was with writing them. Because the other problem was I didn't feel like I could say his name out loud in front of my parents, because they were devastated, right? So I didn't feel like I could talk to them about him, because I didn't want to make them more upset. Oh,

Scott Benner 27:30 I see tell me about the writing the letters. How long did you do that for? And how valuable Did you find it? I

Carrie 27:37 probably did that for a few years, maybe two or three years, and I found it to be hugely beneficial.

Scott Benner 27:46 I know somebody who's doing it right now. That's why I asked I learned

Carrie 27:50 in college for free, right, you know? And again, that was nothing that I knew about, but it really just does help you get things out, you know, and process things without even realizing that that's how you're processing it, because you're just you're not editing yourself, you're just getting it out. And yeah, I found it to be hugely beneficial,

Scott Benner 28:08 awesome, and just talking to him like he was there, like telling him what was happening, how you were feeling, that sort of thing, yep, yep, yeah. I think maybe more people should try that. It's not a bad idea at all, but you couldn't say his name in front of your parents because you were afraid to make them sadder.

Carrie 28:27 Yes, that's what I would I felt like that was my responsibility to not add to that, because again, of course, they were devastated. You know, it was. It's your literal nightmare. I remember the first time I laughed or said his name, and I audibly gasped at myself,

Scott Benner 28:43 oh like you were shocked that you said it out loud. You were like, Oh no, I did it Yes. I

Carrie 28:48 was like, oh yeah. You thought of Voldemort. Yeah, you know, yeah,

Scott Benner 28:52 yep. Have you talked to your parents? I mean, are your parents alive still? No, no, had you talked to them before they passed away about that. Nope, you guys have never talked about this stuff. Nope,

Carrie 29:04 again. That was something that, like I felt like I needed to control that. That was my like responsibility to just keep that in, to not add to anything else.

Scott Benner 29:16 Do you think they ever rebounded from his passing? No, did it age them? Uh, quickly, prematurely,

Carrie 29:25 yeah, and again, this is what's hard to wrestle with myself to talk about they were also alcoholics. So that's also part of my like Preservation, not trying to not add fuel to the fire. That was kind of the household that we grew up in, you know, I always, I was just talking to my son about this the other day, because I saw something in him that I used to do, and I was like, I used to try to make myself smaller, you know, or not draw attention, or not ruffle any feathers. That was just kind of, that's who I was. As a child, yeah,

Scott Benner 30:01 so do you think that you're passing some of this on to your son unknowingly or not purposefully?

Carrie 30:09 Yeah, that's, that's what's hard, because I, like, I said, we literally just talked about it the other day because I said, Honey, I saw you. Like, I see that in you. I see you, you know, if, if, I'll say something to him and he'll just be like, okay, like, like, no, like, react and respond. It's okay, you know. Like, it's just constantly trying to over index how you were as a child and then how you were parented as a child, to not put that on your own child, you know? And it's just yeah. So I did. I said that to him the other day. I was like, I see you, you know, not wanting the attention or trying to, you know, not fit, in a sense, with others, but like to just put yourself in a spot that you don't take up as much space, you know. So it's like, Oh,

Scott Benner 30:53 is there something about you that you think he's protecting? Probably,

Carrie 30:57 you know, which is another thing that I tried to talk to people about over the years. I'm like, he shoulders a lot, you know, like, I wasn't supposed to have him, and then he was in the NICU, and I almost didn't survive. And so it's just like, and he knows about all my health, because I, I want him to know, you know, I'm okay, but if there's a problem, so I try not to talk about it too much. But again, where's the balance there? You know? So I think that he, and especially with what's happened recently, because both of my parents passed within three and a half months of each other, that he's trying to do the same kind of thing that I did, yeah? And so it's like, Oh, buddy, you know,

Scott Benner 31:36 you think currently he's trying to protect you because your parents passing, yeah? And he's an only child, yep. Is there something about, I don't mean this accusatory, but is there something about you that would make me feel like, Oh, you need protecting?

Carrie 31:51 I don't think so. I don't know. I don't know if that's I don't know if it would be different if I had a daughter instead of a son. I don't know if that's like a innate masculine thing, you know? That's interesting.

Scott Benner 32:02 I didn't, I didn't mean it that way, but that's interesting. That's how you thought about it. Yeah. I just mean, like, some people read sad, you know what I mean? Or they they read fragile, or something like that. I have a person I care about that's close to me. I always, the entire time I'm with them, I feel like they're vibrating, yeah, yeah. Like, stuff like that so well

Carrie 32:24 and so maybe, and I think part of it too is he's seen me in dealing with this grief recently, that I do have panic attacks. And so I do tell him, because I want him to know, like, this happens to people. It's okay. Like, if you ever feel this way, it's okay, you know, like, and then I will I over apologize, which is another thing that I've done my entire life. I apologize for literally everything. But I also do feel guilt in that I, you know, lacked on my parenting, you know, role this last year with everything that else that was going on that I'm trying to, I don't know if I'm trying to make up for that, or apologize for it, or, you know, and so maybe I do feel or seem fragile to him right now, you know, I don't know.

Scott Benner 33:10 Do you apologize for apologizing ever? No, no. Have you ever seen people do that? They start apologizing for apologizing, like, oh, my god, are you okay? Right? Yeah, no,

Carrie 33:20 I'm just genuinely sorry. I'm not sorry for being sorry. I'm just, I'm just really sorry. I'm just really

Scott Benner 33:26 sorry. Yeah, you know that about yourself, though? Oh yes, yes, wow. And that's, well, you have a lot of insight about all this, but, but it's not changing it. Is that correct?

Carrie 33:38 Well, and that's the thing. Like, I want to, I try to, like, not sound like an asshole, like I know everything about all this, but I also just, i Nobody shares things that are, you know, not no one. That's not fair, but we don't hear about, you know, the hard things all the time. And I think it's so important because people feel so alone, you know, I mean, it's basis of being type one and what you deal with, people can't understand it. But if you talked about it more, maybe they'd be like, Oh, okay, you know, or at least have more empathy or something. And not that I need empathy from other people, but it's just, you know, part of being a human being to think of others. Yeah, we just don't talk about it enough. It's just like, when I had postpartum, when it happened, I had no include what was going on, because I didn't. It wasn't, it wasn't on my radar.

Scott Benner 34:26 Were you on your own too? Like, was the was the father there? Oh, no, he was there absolutely, yeah, all right. Also, voice, we don't normally know what to do, just so everyone knows, right, yeah, right, yeah, yeah. He's just like, wow. There's certain situations. You should not look to us for help, right? Yes,

Carrie 34:41 no, we're not. And at the same time, know your place.

Scott Benner 34:46 Kerry's like, yeah, they don't know, but at the same time, you should leave me alone too, right, right, yes, Carrie, have you ever heard the episode I did with Erica about the aces, the adverse childhood experiences?

Carrie 34:56 No, but I've heard of that before, and I'm like. Uh, intrigued, and also like, oh, that's probably terrifying to like this list

Scott Benner 35:05 ain't right for you. I'll tell you right now. So there's 10 things that lead to long, lasting mental and physical health effects for a child right growing up with physical abuse, were you ever injured by a caregiver? No, no. Okay. Hey, there you go. Look at you. Your head emotional abuse, being verbally assaulted, humiliated or made to feel worthless. That one, yes, yeah, you got that one? Yep. I'm sorry to ask. Sexual Abuse, no, no, okay, got two nos and a yes. Physical neglect, not having basic needs like food, shelter or health care. Matt, no, excellent. Emotional neglect, lack of emotional support, affection or sense of being valued. Yeah, domestic violence. Did you witness domestic violence? I didn't good a gear four and two, substance abuse in that Oh, you got that one? Okay? Three, yeah, mental illness in the household, depression, bipolar, schizophrenia, suicidal tendencies,

Carrie 35:57 I would say depression. My dad, I also noticed in him, after I started understanding that I was having panic attacks, that he did too, but he, you know, was a war that and of a different generation, and you don't talk about any of those things, you know. So parents

Scott Benner 36:14 stayed married the whole time, or no, they did okay. And anybody in the household incarcerated? Ever being in jail. No, all right, so you got six no's and four yeses. Your four, yeah, but that's a lot though, trust me,

Carrie 36:28 but listen, it's 60% good.

Scott Benner 36:32 I also read that. I like to read them on the podcast and so on, because I imagine people driving along going, Oh God, no wonder. Oh no, yeah, yeah. So each ace increases your risk of chronic health conditions, mental illness and risky behaviors later in life, right? Yeah, awesome, yep. Now, of those 10 things, how many is your son dealing with? Well,

Carrie 36:55 I suppose my mental health, you know, obviously, I think that might be it though you're

Scott Benner 37:00 together with your husband. Yeah, okay, cool. Nobody's hitting each other. Awesome. No, Carrie, look how good you did. I know that's what. You grew up six and four, the kids growing up nine and one, he's doing awesome. Yeah, okay, I'm not kidding. Well,

Carrie 37:17 no, and that's my husband. I talk about it, you know a lot we're like, Listen, this whole, like, stopping the pattern and, like, it was very important to us, you know, so we're cognizant of it and try to, you know, everybody does the best they can, I guess.

Scott Benner 37:33 Listen, I have just so, oh, it doesn't feel like we're picking on you. Parental separation, that's a yes for me. Nobody incarcerated, no mental health issues, substance abuse, no domestic violence. I'm gonna go yes, but not Yeah, not against my mom. It's against us. I get although I guess that's physical abuse. Hold on, right, right. Well, you know what's funny, my dad never hit my mom, but she was intimidated by him, right? You know. So I'm gonna count that. You know, emotional neglect, no. Physical neglect, no. Well, I mean, I never went to a dentist. Does that count emotional so, yeah. I mean, I got four. How are your teeth? I guess? Well, it's the main question, by the way. I just did an episode yesterday with a pediatric dentist, and I ended up admitting to her I didn't see a dentist. I was, like, 19 or 20 years old, but you still have your teeth. I mean, one of I love. They're they're hanging on by a thread. Some of them, but well, but I'm ahead of it now, like, yes, my point is, is that I think that people, you know, generally speaking, this list exists because it's the things that can happen to people, right? You know, do you think your brother's passing wasn't purposeful, right? He was just trying to get

Carrie 38:45 high. No, yep, no, yep. Wow, something.

Scott Benner 38:49 And now you're talking in your notes to me, you know, it's very simple, actually. It just says, I have survivor's guilt, sure, yeah. Can you explain to people what that feels like?

Carrie 38:58 Well, so it's like I said, and I felt this at a very young age. My brother was a healthy one, you know. And I also have guilt in the sense that, like, everything when we were younger was focused on me because I was the unhealthy one, you know. And it was like a dire sentence, like everything that was happening to me was like, Oh my God, she's gonna die. Like, this is it just all was very amped up. And so I got a lot of attention because of that. So that's part of the guilt that I feel. And then, of course, you know, my parents were left with me, which, I don't mean this to sound like self deprecating, but like, again, I was the more problematic one in the sense that I was not healthy, and there's all these variables happening at all, you know, all at once, I guess, or all of the time, I felt guilty for that. And just, I think whenever you lose anyone, you feel a little bit of survivor's guilt because you're still here. You know, why them? Why not you? Why not? You know,

Scott Benner 39:53 did it happen with your parents, even though they were older? I don't know.

Carrie 39:57 I don't know if I've processed that the problem well. Well, there's lots of problems, but they died so so my dad was 13 years older than my mom. He had been married before and had children before, so he was much older, but they were both unwell, and he simply went outside to do something with their pool and broke his hip, had surgery, and then passed away two weeks later. Wow.

Scott Benner 40:23 How old? 84 Wow. That's not a bad run. 84 Yeah, and the drinking, so it's not bad at all.

Carrie 40:30 And he had had leukemia and just was very unwell. He had had kidney cancer. I measure everything by how old my son was at the time, and my son was a toddler, and basically when that happened to him is when I noticed his, you know, I'm dying. I'm gonna die. This is, you know, yeah, the ironic part of it was, is that my husband and my son and I had been taking care of their pool for years, right? Just got into his, have no idea. And again, part of his generation, and him being a man, and you know, who I could see as he got older and more unwell, how upsetting it was for him to not be able to do the stuff that he used to do around the house, you know. And for whatever reason, he felt like he needed to go out there that night and check on something. And, you know, that's,

Scott Benner 41:16 um, it's awful. And I understand too, like that feeling of like, yeah, all the things I was in this world they they shrink, yep, if you can't reform yourself to your new abilities, right? Yeah, it can be really devastating, I would imagine. And then you so, then your mom's 71 so he had had esophageal

Carrie 41:38 cancer. Oh my gosh, did they smoke? Had smoked or, gosh, I don't know, 50 some years,

Scott Benner 41:46 yeah, because how you gonna have a drink and not a cigarette, right? And

Carrie 41:50 they had both quit drinking at this point. She never quit smoking, which, you know, is here or there, it does it doesn't, you know, she had had esophageal cancer, and this was happening like, during COVID. So my dad was not well because he had leukemia and was just very frail. I would take her into her treatments every day. And again, this doesn't seem fair, but it's just part of, like, what sticks out the second we would get out of, like, her chemo and radiation, she'd have a cigarette, you know? And I'm just like,

Scott Benner 42:17 what are we doing? Like, chemo, stressful,

Unknown Speaker 42:21 right?

Scott Benner 42:24 Better off sticking with the booze and not the cigarette if she's gonna pick one. You know what I mean. But God, yeah. So then

Carrie 42:30 she was, they got it. Supposedly they didn't see it anymore. It was gone. But she had to keep, you know, going in for checkups and things like that. And so it was about, and I could she had been not well, like something was not right, obviously. And she had had some, like, major infections and stuff. I took her in for checkup and endoscopy to check on things. It was about three weeks after my dad passed away, and I took her in for an endoscopy checkup, and it was back. Her cancer is back with a vengeance. Like this was, she had a hole in her esophagus, she was not going to survive. They could have done a major surgery. She didn't want to do that. And I get it, she's also my dad had just passed away, you know? Like everything was awful, and so he passed away three months later. No

Scott Benner 43:21 kidding, yep. Do you think, without him, she, I realized she's not in control of the cancer. But do you think that was the thing she was just like, all right, let me get out of here too, or

Carrie 43:30 a little bit. I mean, she, she was absolutely miserable. Things were awful. She had to have a feeding tube. And this is part of where I, you know, my husband took over for our son completely, and I just took care of her. She was She lived with us for the last three and a half months of her life, but it was us being in a different town all the time and going to her appointments and appointments and appointments and appointments, and she just had every card stacked against her. And, yeah,

Scott Benner 44:01 I mean, listen, it sucks. Like, I don't know how to I mean, you've smoked your whole life, and you know, you think you're gonna get away with it, and then you don't. You're like, well, I might as well keep smoking, because it's gonna kill me eventually. Although I did really think the infusion nurses, I wonder how it feels to start chemo and somebody who smells like a cigar, right? I know, I know must make you crazy. And, of

Carrie 44:23 course, it's frustrating. It's frustrating to watch, and part of my, you know, and this isn't fair for me to say this either, but it's like I've been like, working my ass off my entire life to try to, you know, be as healthy as I can and do mostly all of the right things and and then it's just like, come on, like this one thing can we just at the end, it didn't matter, and it didn't I

Scott Benner 44:49 have to imagine that one of the most difficult positions you can be put in as an adult is having two children, loving them both, one of them dying. Right? You losing your will to live, right, but knowing that you have to now like exist through this world for your remaining child, right? And not being able to shake the feeling of what it must feel like to lose a

Carrie 45:13 kid, right? It's an absolute nightmare, yeah, you know, I mean, it's

Scott Benner 45:17 a no win situation, because they probably wanted to go lay down on a train track, sure, and then they look at you and they're like, oh, we can't, because Carrie's here, right? Then they got to feel guilty for not wanting to die along with your brother, right? And then they've got to feel guilty for not wanting to be happy for you. And right? It can't. It just feels like a never ending cyclone of hell it was, yeah, yeah, yep. And drinking smoke too, just so, you know,

Carrie 45:41 I don't want to talk about this in the wrong way, because I do believe they did the absolute best they could, but it was a nightmare, you know? I mean, everything was a nightmare. Honestly,

Scott Benner 45:50 smoking, drinking and cancer still sounds like the best you can do in that situation. I mean, I'm just look, not that there aren't people who pop up, you know what I mean. And God bless them. But like, I had a woman on this podcast maybe in the first year, and her son passed away at college, if I'm remembering right, he had type one. He got sick, he tried to go lay down. He just never woke up again, right? I still see her on social media, and she looks as sad today as she felt when I spoke to her 10 years ago, I don't know. You don't

Carrie 46:22 get over that. Yeah, I have no idea. You know, you you move with it every day, right? You don't move through it. You move along with that every single day. You don't move through it. You don't get through it. You don't, you know, get past it. It's never not there. Like, you know? I mean, I have a child, you have children like it's unimaginable, you know.

Scott Benner 46:43 And having a tragedy feels like, well, we've experienced a tragedy. Life won't give us another one like, you know, and, but I don't know if you saw this, and this would be pretty, be a difficult thing to see, but there's been a woman named Michelle who's been on the podcast twice, right? Her son, Jesse passed away. There's an episode called Jesse was here. It's lovely. It's about her young type one son who died. And I'm gonna try to see what episode numbers they are while we're talking. Okay, I saw yesterday her husband and three of their friends died in a car accident. Oh, my God. They're like in their 50s. As far as I'm as far as I know, Jesse was here part two. She was on again, 722, episode 722, and I'll find the first one. And Part one was episode 90. I did it in 2006 Wow, right. So, and they're all, by the way, like JDRF bike riders. They do all that tour for a cure stuff like lovely people, they've lost the child. You think, Well, what else could happen? Right? Right, right. What about a car accident that kills me and my husband and three other people? Exactly? Yeah, yeah. That's insane. Like, so that feeling of like a bad thing happened to me, more bad things aren't going to happen to me. That's not real. And then once your kid passes away, like your parents had, and then someone gets cancer, you probably think like, man, there's, there's no filter between me and and everything that goes wrong.

Carrie 48:12 Yeah, enough already. Yeah, this is enough, you know, but it's not, and it doesn't stop, and you have to figure out how to, you know, process all that. But it doesn't make it easier, but in

Scott Benner 48:22 a different way, don't you? You have the same problem, right? You've, I mean, seven auto immune issues,

Carrie 48:27 well, right? And so that became a joke with me. And that's how I deal with most things, is, you know, through sarcasm and humor. But it's like, Okay, two, okay. Then I got up to five, and I was just like, okay, seven has to be it. Like, we are done with this.

Scott Benner 48:40 Like, what's going on? I'm running out of fingers. Kidding me, right? Am I supposed to keep track of them if I go over 10? Yeah, my feet are on fire and my hands are freezing. I can't count, right?

Carrie 48:50 And then they're like, the neuro anemic, and you have osteo arthritis and you have severe degenerative disease. And I'm just like, okay, like, can we quit naming them? Like, surely, they're all just one thing. Why

Scott Benner 49:01 don't we just write down on the paper carries up, and then we'll like, well, like, that feels like one thing at least. And really, yeah.

Carrie 49:09 And every time I go to the doctor, which, of course, I have tons of them, and they need me to check in with them all the time. And I'm just like, just read my chart first before you start speaking, please just read my chart. Like, if I haven't seen you before, or if this is your new nurse, which nurses are a godsend, but like, Please don't ask me if anyone's ever told me that I have type one. Like, yeah. Does that actually happen? Though it has happened twice,

Scott Benner 49:35 and I like, not laughing, but I am laughing. Yeah, that's fine. Oh

Carrie 49:38 no, it's ridiculous. Like, you can see my pump. And I again, deal with all these questions all the time. And so one time I literally was like, huh, really? And then she looked at me, I was like, Yes. At that point it was, you know, I was like, for 20, whatever, years now, she's like, oh, like, yeah, people don't have insulin on their medication list, just. Funsies. Like

Scott Benner 50:02 Has anyone ever told you you have diabetes? Do you ever go

Carrie 50:06 right or the other one that I get a lot, which, so I have to see a pulmonologist for my scleroderma. They they do an echo and check my lung, just make sure I don't have hypertension in my lungs. Are you on oxygen? Do you see any?

Scott Benner 50:19 Yeah. Wouldn't it be with me right now? Like,

Carrie 50:22 when I have the cannula? Like, when I like, Nope, no. And you work at a pulmonologist office, like, I think you should be able to fight real quick if someone's on oxygen or not. Like, try harder when you're asking those questions. Look at my face when you ask me that. Yeah, by the

Scott Benner 50:40 way, for people who don't know, scleroderma is a rare auto immune disease characterized by hardening and tightening of the skin and connective tissue. It falls under the category of connective tissue disease and can vary widely in severity. In some people, it only affects skin, while in others, it can affect internal organs, blood vessels and the digestive tract. Yes, that's why you mentioned earlier. You're not sure if your slow digestion is scleroderma or gastroparesis, my

Carrie 51:03 scleroderma, and now they just call it connective tissue. Like, they're not sure, because it does not affect my skin at all. Like, if you look at me, because I've had surgeries before, and they're like, oh, like, crest syndrome. I'm like, No, I so I don't have the skin part of it. It does not affect my skin. It has affected my esophagus. So I've had, have you ever had a motility test done like for your esophagus? Esophagus?

Scott Benner 51:27 No, is it horrible? It's the worst thing I've ever it's, it's awful. Why? What

Carrie 51:31 do they do? They put a tube through your nose, down into your stomach. So what they're trying to they're, they're, they're measuring if you can swallow properly or not. And then they have you while you have this, you know, down your nose, through your throat, into your stomach, you have to eat something and swallow it. And then they like, now swallow, and they'll tell you like when you have to swallow. And all these things, I've had to do that twice, and they do they they measure 10 swallows. And the best I ever did was that I failed nine out of 10, not 10 out of 10. My scleroderma has affected my esophagus, and then most likely my, you know, gastroparesis is that they think it's from that, but who knows, and it doesn't matter, do you have

Scott Benner 52:17 reflux as well? Oh yeah, yeah. Difficulty swallowing, acid reflux, malabsorption, you mentioned earlier, yep, and you also have the pain, stiffness and swelling and joints. Yeah, yeah.

Carrie 52:30 I've had several surgeries. I've had like six hand surgeries, procedures on both my shoulders, which were for frozen shoulders, but I have osteoarthritis bilaterally, and then I had two discs replaced in my cervical spine. Jesus

Scott Benner 52:45 Christ. Have they ever tried any of those injectables on you? Yeah,

Carrie 52:50 I've tried, like every my rheumatologist, we tried, kind of everything you can think of in my body did not respond well to any of them. So all I take right now for it is Plaquenil.

Scott Benner 53:02 Okay. Is your son have any auto immune issues? Nope, good. That's awesome. He

Carrie 53:08 is allergic to outside and he's an athlete, so we manage that with allergy shops and meds, but no, no auto immune stuff. Knock on wood. Real

Scott Benner 53:17 bad hay fever. He's

Carrie 53:20 allergic to grass and trees. Oh, that's hardly anywhere on that won't be a problem. And he's been an athlete his entire life, so it's like, okay,

Scott Benner 53:27 he should move to New York City or something. Yeah, I don't know, yeah, this, this mog will choke him instead, but at least the grass won't go life's great, isn't it? Yeah, I had somebody told me the other day, you should eat local honey. It helps you to not be allergic to local allergens. And I was like, I'll try it. Sure. Like, I'll give it a whirl. So

Carrie 53:49 whenever you go anywhere, because we noticed this with him, he plays competitive soccer, so they travel a lot. Whenever we land anywhere, we're like, oh my God, here it comes.

Scott Benner 53:59 Yeah, and just the over the counter stuff's not going to help

Carrie 54:02 him. I mean, he does fine. And here's the other thing, he's also stubborn, and unless he's, like, really struggling, he's gonna say that he's fine, you know, which I think partially comes from me and from my husband. So yeah,

Scott Benner 54:14 bunch of hard headed people, I listen, if you're not hard headed, I'm assuming you would have dove off a bridge, like, 20 years ago. So,

Carrie 54:20 I mean, I am surviving purely on spite at this point. Like, you can't have a baby. Oh, yeah, okay, oh, just proverbial, hold my beer. I don't drink. But yeah,

Scott Benner 54:32 100% just named this episode. Survive on spite. I think that's great, yeah? Like, I'm not dying. Screw you off.

Carrie 54:40 No outlet. Every single one of

Scott Benner 54:42 you, how was your diabetes through all this? I mean, how do you know? Like, why do you know me?

Carrie 54:46 I honestly don't know when I found the podcast. I have no idea. I think it was at the Facebook group first, somehow. But again, like I said before, historically not sound so I don't know when i. Discovered it. I think

Scott Benner 55:00 you said that before we were recording that you're not historically sound, geographically

Carrie 55:04 or historically sound. So I don't know when I found you, but I love the online community. I mean, again, I've said this before. I think it's so important to talk about things and share things so people understand that they're not alone, or can feel some sort of because you know all of these things are. They can feel lonely, you know. And you can talk to whoever and try to explain everything to them, but there's nobody can actually understand it, you know, which is true of anything. But when your health has affected you your entire life, and it's not something that's going to go away, it's nice to have a group, not of people that you know are suffering, but that you can, you know, oh, so and so, you know, oh, that happened to me, or this is what works for me, or just to listen, you know. So

Scott Benner 55:50 starting that group is maybe one of the best things I've ever done in my life for other people, and I did it begrudgingly, and didn't understand how valuable it would end up being for them, right? I just meant begrudgingly. I did not want to be in charge of a Facebook group who does so far, I've not met one person who's like, oh, I run a Facebook group and I love it. Yeah? The nuts and bolts of it are not fun. Well, it has to be rewarding. Yeah, it's very rewarding. So providing a place where people I don't know are led to so many different valuable things in their life, like listing them is not even important. That makes me feel good when I have bad days, I pop on that and I see people doing better or asking good questions or learning how to communicate with each other, or whatever they're learning to do in there. Yeah, and I think this is a good thing you did here, Scott, like, you know what I mean? Like adults, it's

Carrie 56:34 just as simple as I will see myself like reading someone's response or someone's comment and being ready to just fire off something awful, right? Like, what the like this is, you know, don't say it, you know. And then I'm like, Nope, you're an adult. We don't do that. This is not how we like. You can't be one of those people that adds this to this fire of being able to just say whatever the hell we want and there are no consequences. So even that, like, you're teaching people that. And again, I'm a grown ass adult. I'm still like, Oh, nope, can't do that. That's okay.

Scott Benner 57:05 I have people come to me all the time. They're like, you're teaching adults how to talk to each other. And I was like, I know, yeah, unintended, unintended benefit of doing this. So it's a lovely, lovely thing. It really is, you know, like, Yep, I would have made fun of it five seconds before I did it. Yep. I would have been like, oh my god, Facebook, ridiculous. People are going to be arguing all over the place. But if you just step back and see everybody as being in a slightly different position, right in a similar journey, it's awesome to watch everybody rise up. You know what? I mean, yeah, anyway, cool, but it's awesome. Is there anything we haven't talked about that we should have.

Carrie 57:41 Well, you just asked about my diabetes, and I didn't

Scott Benner 57:43 answer. Oh, no, I want to Yeah, I want to know. I'm sorry I got no,

Carrie 57:47 I go on tangent. I like I said, not linear. Don't

Scott Benner 57:50 apologize, Carrie, you didn't do it. It was me. Well,

Carrie 57:56 I'm sorry. So I was labeled brittle as I was young, which I don't know was, I was like, we didn't have CGM. This was 1987 I have a vivid memory of the sound of my mom rolling my insulin, you know, for me, before we were draw it up, and I started giving myself my shots right away, because it was mine. Even at six, I was like, Nope, this is this is mine. Didn't know about the thyroid thing right away, which everything compounds everything else, so not great. And then teenagers just not great. And again, had not my period was weird because of whatever else hormonally was going on. It was a nightmare without, you know, a pump or a CGM or anything like that. And also, when those were available to me, I was stubborn. Thought that that was taking my, like, own personal control away from No, I do this. I give myself these shots. I do this. You know, I don't need a machine. Type of stubbornness. I've been on a pump for 18 years, in a CGM, for just as long, I guess, with everything that's happened, you know, in the past year, my a 1c went up. I'm typically six, six ish,

Scott Benner 59:11 so awesome. Good for you. But growing up, you don't know what the hell you was going on, right? No,

Carrie 59:16 yeah, no, it was a show I tried to, you know, do what I was supposed to then, you know, teenagers, I did rebel. I did have burnout. I was, you know, I hated the world. My brother died, all of these things. You know, nothing was regulated in sense of, like, my thyroid and hormones and whatever. So, yeah, I it wasn't great as a teen. But

Scott Benner 59:37 could you think of one thing that that teen could have heard back then that would have stopped them from avoiding their health like that. I

Carrie 59:47 don't know. And that's kind of what I the basis of me wanting to talk about or talk to, I guess, like, at what point? Because I see that everybody wanting perfection, which I just think is like. The worst Lord that has ever existed, like there is no such thing in any realm of reality, of perfection, it's just it's not a thing. And people striving for these things, and then what do you give up in that? Like I am blessed that my parents let me be a child when I was younger, they weren't helicopter parents. That wasn't a thing. Like my brother and I would be gone literally all day. And I think about it now, I'm like, Oh my God. Like, yeah, I was diabetic, and they just let me be gone all day. We didn't have phones, we didn't have, you know. And I'm not saying that that's better or worse. It's just that's how it was, you know. So I'm glad that I had that childhood, and that wasn't the focus, because I think I would have been afraid, you know, of just my own health all of the time and living my life. I don't know if there's anything that you could have told me. I think that we all just have to, like, navigate this how we're going to and then, of course, my brother died, so then the emphasis, or my was trying to, like, wade through that grief. I don't know. I don't when

Scott Benner 1:01:04 you say I'm always interested, when people say, like, I'm so glad that we didn't pay that close attention to it so I could be a kid that kind of feeling. But do you think that you feel that way because you're okay today? Like, if you were telling Yeah, right, if you had bad complications, you'd be like, Oh my god, they should have paid better attention to me. And I don't know now I'm stuck. Like, you know what I mean? Like, it's

Carrie 1:01:24 such a pass the blame. Yeah, it worked out for me, right, right. Knock on wood. Up to this point, I don't have diabetic complications, but I, you know, I could say sure that I would feel the other way, but maybe I would just be angry about something else, or, have, you know, feel like I missed out on this, that, or whatever, but that's just how it was. And again, I'm not saying that that's better, because, you know, there are people that have complications and that this, it didn't work out for them that way. That's just how it was. It was, you know, the 80s, yeah. And, you know, I remember, I was talking to somebody the other day, like, I had to collect jugs of urine. Like, that's, you know, like, I'm not thankful that I had to do that, yeah, and then walk into a hospital carrying this bag that everybody knew was full of urine. Like, come on, you know, like, I'm not thankful for that. I'm so thankful for the technology and how things have, you know, I wouldn't have been able to have a healthy pregnancy, as healthy as it was, if it weren't frontal pump and all those things, you know, like, there's no way Sure, yeah, I love the

Scott Benner 1:02:30 way you talk about it, because I think there's no actual answer. It is very specific person to person, and I completely agree, yeah, that's why I always find it interesting when people want to argue about that, and they're like, Well, my parents did this, and I'm okay, so that's the right thing to do. And I'm like, that just worked for you, you know, right for you.

Carrie 1:02:48 You know, it's just like the same old, the argument between the diet, you know, yep, and what kind of insulin use and what kind of pump you use. You have to figure out what works best for you, the healthiest for you that is manageable. It's

Scott Benner 1:03:02 also not to say that the thing that you did won't work for someone else, and you should share it, because someone might it might work out really well for them, but stop acting like the thing you did because it worked out is the right way. It's the only way to do it. You're ignoring the other variables, and most of those variables are you. There's so

Carrie 1:03:18 many, you know, I mean, my God, I have six additional auto immune diseases that my mine is not the same as yours, and it shouldn't be, you know, and that's that includes how you your treatment and all those things. But I don't know. I again, I'm a very stubborn person, and went through a lot, so I don't know if there would have been anything that you could tell me that I've been like, Okay, I you know, it's one of those things that it's just like, when I got it, I started doing my shots myself, like, I take ownership in these things. So I don't, I don't know if I would have necessarily listened, and that's what's so hard. You know, everybody has burnout, and you see people in the group with teens or young kids, and I'm just like, they just eat. My thought on that part of it is you have to figure it out, as in the child, I try to come at everything from the perspective of being the one that has type one, you know, maybe what I would have needed to hear, or someone to understand, that I just had to figure it out, right? And people telling me, you know, you're not doing this, you're not doing this, or being angry, or being mad, or whatever, that was not beneficial. So hard,

Scott Benner 1:04:24 difficult Carrie, to hear that your kid is having a problem and that it's possible they won't get through it. Sure, because that's what you're saying when you're saying, look, they have to figure it out, which is true, right? Like they have to find their way through it, which means they have to have the understanding that allows them to move forward. And it's not just a thing you can hand them right? It's through a process. And even if you try to take them to therapy, what if you get a crappy therapist and that doesn't work, etc. It

Carrie 1:04:50 can happen through anything though, too. And you know, you just have to hope that you have given them the tools that they need, right, or that at some point they're going to understand or value themselves enough, which. Is so hard. It's so hard to watch. I have a 17 year old like, you know, he, he doesn't have the health things, but we all have things, right? It's just like relationships or things that happen with, you know, something that you've poured your life into, and now you're, you know, things are not having for you the way that you think that you should. And everybody has to figure out how to navigate those things, whether it's your health or not. You know, your health, of course, is just the utmost importance. So it feels like it's just, I'm sure it's terrifying, you know, and you just have to feel like you have to fix it, and you just, you can't, you know, I

Scott Benner 1:05:35 know a story of a of a young man in high school who met a girl, and he the girl was dating someone, and eventually she stopped dating that person. And he, he, I think he saw that as this opportunity, right? And started to date the girl and his friend group, um, perceived him as breaking the bro code. And, oh, sure, and alienated him, and he had, like, a pretty significant decline, right? Yeah. After a social circle, walked away from him, of course, yeah. And you look back and he didn't, he didn't do anything wrong, you know what I mean, right, right? And prior to that, like, not more of a rock solid young man, right? Like not a kid you would look at and think, oh, like, something's gonna befall him, and he's just gonna collapse. And you wouldn't, you wouldn't have thought that so and

Carrie 1:06:21 it, you know, it could be anything. So do we hold our breath, you know, forever and wait for the proverbial shoe to drop, or do we just hope that? And I say this, you know, not dealing with something specific right now, in regards to my own child, you know, I'm not trying to make it sound simple or negated anyway, make it, you know, but it's just like, I don't know, keep

Scott Benner 1:06:42 you. Don't give up. What'd you say earlier? Surviving. How'd you say it? Oh,

Carrie 1:06:46 I'm surviving purely on spite. Yeah, survive on spite. That's all. Yeah, I'm with you. Just be the most stubborn person that's ever existed and you'll be fine. I'm with you. Yeah, perfect. I'm

Scott Benner 1:06:56 gonna leave it like that. I'm gonna, I'm gonna end right there. I think that's awesome. I appreciate you doing this very much. I don't know why you thought you were all over the place. You were very place. You were very articulate about your about your story, and clear and forthcoming, transparent. I really appreciate it.

Carrie 1:07:08 Well. You might have people that are like, wait a minute, this was all over the place, but it makes sense to my brain. No,

Scott Benner 1:07:14 I don't think that at all. I think you're fine. Don't worry about please. Don't think twice about that. I don't don't apologize. Let it go. Okay. The podcast you just enjoyed was sponsored by tandem diabetes care. Learn more about tandems, newest automated insulin delivery system, tandem Moby with control iq plus technology at tandem diabetes.com/juice box. There are links in the show notes and links at Juicebox Podcast. Com, a huge thanks to us med for sponsoring this episode of the juice box podcast. Don't forget us, med.com/juice, box. This is where we get our diabetes supplies from you can as well. Use the link or call 888-721-1514, use the link or call the number. Get your free benefits check so that you can start getting your diabetes supplies the way we do from us. Med, I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. If you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bold beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginnings series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player, or you can go to Juicebox podcast.com and click on bold beginnings in the menu, the episode you just heard was professionally edited by wrong way recording, wrongway recording.com, you.

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