#1429 Gas Station Orange Juice

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Candid family stories on type 1 diabetes management—navigating diagnosis, pump challenges, lows, adrenal issues, and everyday 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
Welcome back to another episode of The Juicebox Podcast.

Carly 0:13
My name is Carly. I currently live in a house with three diabetics. I am one of them. My husband is the second, and our six year old daughter is the third. We have another daughter who just turned four, and so far, she's in the clear.

Scott Benner 0:29
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. I know this is gonna sound crazy, but blue circle health is a non profit that's offering a totally free virtual type one diabetes clinical care, education and support program for adults 18 and up. You heard me right, free. No strings attached, just free. Currently, if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama or Missouri, you're eligible for blue circle health right now, but they are adding states quickly in 2025 so make sure to follow them at Blue circle health on social media and make yourself familiar with blue circle health.org. Blue circle health is free. It is without cost. There are no strings attached. I am not hiding anything from you. Blue circle health.org. You know why they had to buy an ad. No one believes it's free. The show you're about to listen to is sponsored by the ever since 365 the ever since 365 has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get ever since cgm.com/juice box. This episode of the juice box podcast is sponsored by the Omnipod five learn more and get started today at omnipod.com/juice box. Check it out if you're looking for community around type one diabetes, check out the Juicebox Podcast, private Facebook group. Juice box podcast, type one diabetes. But everybody is welcome. Type one type two gestational loved ones. It doesn't matter to me if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox Podcast, type one diabetes on Facebook. My

Carly 2:21
name is Carly. I currently live in a house with three diabetes. I am one of them. My husband is the second, and our six year old daughter is the third.

Scott Benner 2:31
Are there other people in the house besides the three of you? We have

Carly 2:35
another daughter who just turned four, and so far she's in the clear.

Scott Benner 2:40
Obviously a thing you're concerned about. Yes, yeah.

Carly 2:43
I mean, we absolutely test her every now and then. And since she sees us testing ourselves, she requested sometimes on occasion, so we'll give in to her. And so far, nothing concerning. We've also had her gifts and blood work before when she turned to in a study, and no markers so far. So she's good for now, and then we also, in December, we'll have another family member joining us, and 24 weeks pregnant right now, also prolific

Scott Benner 3:09
Carly. Listen, I have you know, it's funny. You the way you set this up just now, you made me think of it differently than I ever have before. Meaning, your four year old wants to be part of the group she does. She feels left out sometimes, and then you're stuck telling her which is the best news she's ever going to hear in her life. You do not have type one diabetes, and you're and you have to explain it to her, but she's disappointed by it. She

Carly 3:34
is, she is. And sometimes she'll say, you know, I wish i i wish i had diabetes like you. And I'm like, I know you say that now, but trust me, be very glad that you don't and and you know, it's just cute, because she's four, and she doesn't, she doesn't understand, but we try to include her in things. So if we're treating a low on my six year old, we'll let her have a six year old too, or something like that. So so she does get a little bit extra candy here and there for treating a little for somebody else

Scott Benner 4:00
so interesting, though, isn't it? Because, you know, you spend your life as a parent trying not to let your kids down, and you're delivering maybe the greatest news and but you have to do it in a way that she doesn't feel let down, right? Yeah, that's really something I want to understand the timeline. So how old were you when you were diagnosed? So

Carly 4:20
I was pregnant with my first who is the six year old diabetic in our house. Her name is Vienna. I was pregnant with her about 23 weeks along. Age 30 How old are you

Scott Benner 4:30
now? 36 Oh, my goodness. And your husband was, how old when he was diagnosed,

Carly 4:35
he was about 15 months old. So he was a baby. He was diabetic when I met him, he was one of the first diabetes I've ever met before. And at the time, I was under the impression, well, you're thin, you're in shape. How do you have diabetes? Because I didn't understand the difference between the autoimmune type one and then maybe the lifestyle or family, you know, right? Genetic. Version of type two. So of course, he was happy to educate me on the difference, and I'm glad I learned the difference. And yeah, so just kind of strange that it's not like we met at a diabetic camp. We didn't meet in a support group. He was the only diabetic when we met and got married and got pregnant with our first child. And then, before that child was born, I had been diagnosed, and I found it myself. I before the glucose test was taken, I was just feeling really off and like, really thirsty and running to the bathroom a lot, which is not uncommon for pregnancy. However, it just felt like something else. And I was very active at the time, exercising five or six days a week and eating pretty healthy, taking care of myself, and I've never actually tested my blood sugar. We had been together for eight years at this point, and I've never tested my blood sugar before. I've been curious, but I'm like, I don't have a reason to check it. Why would I need to? Right? But something in my head, I'm like, You know what? I should really just check in just see. So I used his meter. He was out on a CGM at the time he was doing finger sticks. So I checked my blood sugar, and it was 373 and so, of course, well, that's not right. Let's wash my hands. Let's, you know, check out another meter, because he had three different meters. Sure enough, everyone I every time I checked it was in the three hundreds. So of course, I first thought, well, gestational diabetes. And I'm like, How did I let this happen? I'm so active, I'm so healthy. The next morning, I called my doctor, and she said, You know what? That sounds? Too high to be gestational diabetes. I think you need to see endocrinology. So after having to make this appointment myself with no referral, and being desperate and scared because I was having blood high blood sugars for God knows how long. Yeah, nobody seemed to think it was a big deal. I'm on the phone crying with one of our major hospitals in the Milwaukee area, and I said, Hey, I need to get in. I don't have diabetes. My blood sugar is over 300 and I'm pregnant. What can you do for me? And finally they said, Okay, we'll get you in tomorrow. And I went in, and I think they initially thought, too, okay, this is gestational they had me meet with a dietitian, write down all the things I was eating, how active I was. And after they found that out, they said, This sounds like type one,

Scott Benner 7:21
so you're like, Thank you, right?

Carly 7:23
Yeah, appreciate you listening. That's what I thought. But I had the endocrinologist came in and saw me, and then they ran all the blood testing at the get the get antibodies tested, C peptide tested, and although my antibodies was still, I think on the low side, I think they were like 77 obviously still positive, though, so I was diagnosed on the spot, and met with a diabetes educator that day, and just kind of trying to absorb everything, how my life is going to completely change from the previous 30 years. And I remember pulling into the pharmacy, picking up my prescriptions and just crying in my car, to be completely honest, I had a bag full of medication and pen needles and testing supplies, and I said, How did this happen to me? How I have no family history. I had only known about three type one diabetes in my entire life. How did this happen to me? I

Scott Benner 8:21
do wonder, now that you've had it for a while, is there other you know, have you been able to identify any other autoimmune issues in your family?

Carly 8:27
So we did one autoimmune issue I did know in our family history was psoriasis. So my mom would have, like, nothing serious, like patches here and there, and then I would get the same and then when I was in high school, or just after high school, I got the I got a vaccine, the Gardasil vaccine, and I broke out in full body psoriasis. So I think that it was autoimmune condition number one for me, and then the type one number two, as we all know, they like to run together in with other autoimmune diseases. So so the psoriasis runs in the family. Otherwise, nothing else, no. Type one. Probably. I

Scott Benner 9:04
don't want to sound like a conspiracy theorist, but I think I've got this figured out. Your husband's sperm makes people type one.

Carly 9:12
You know, it's, it's funny. We have joked about that, I bet you like, Is it contagious and not? Not talking about the sperm part. However, he did have two friends, two male friends, just friends in school that also were diagnosed after he was so so not. It took

Scott Benner 9:30
me a minute to figure out why you were being so careful about telling the rest of the story. I was like, that's because my stupid joke. You can see how crazy it is. But then after you recognize that you have type one and he has it. Do you immediately think our kids gonna have it? Or no, my daughter is 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day. A since then, that's 16 straight years of wearing Omnipod. It's been a friend to us, and I believe it could be a friend to you. Omnipod.com/juicebox, whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bathtub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport or to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once omnipod.com/juicebox, get a pump that you'll be happy with forever. Today's episode is sponsored by a long term CGM that's going to help you to stay on top of your glucose readings the ever since 365 I'm talking, of course, about the world's first and only CGM that lasts for one year, one year, one CGM. Are you tired of those other CGMS, the ones that give you all those problems that you didn't expect, knocking them off, false alerts not lasting as long as they're supposed to. If you're tired of those constant frustrations, use my link ever since cgm.com/juicebox, to learn more about the ever since 365 some of you may be able to experience the ever since 365 for as low as $199 for a full year at my link, you'll find those details and can learn about eligibility ever since cgm.com/juicebox,

Carly 11:45
check it out. It absolutely crossed our minds. It wasn't enough to stop me from wanting a second right away. We had our second. They're they're about two years, six weeks apart. Our first Vienna was not type one when our second was born, and there was no question. I'm like, we're going to have a second one. I'm not one. I'm not, I'm not that worried about it. I know the chances are elevated, but it wasn't enough to scare me from having more children. My oldest is now two, almost three. Our youngest is nine months old, and and two year olds are intense and crazy, and she's a girl, so I'm like, she's a little crazy, she's got attitude, She's feisty, but she was also having accidents, and she was not herself, and so take out the the meter, test her blood, 250 so first thing I did was cry, be honest. Then I called my mom, and I cried some more, and then I called the doctor, and we got into her pediatrician. The next day, they took all of her blood work. By the end of the day, we had a type one diagnosis. However, it was very early. Her ANC was only 5.9 so we were really, you know, heated on the signs and symptoms. And same with me, when I was pregnant, I was diagnosed at an agency of 6.4 so again, caught very early. I caught it before they even gave me the glucose test. I had it on my counter. Never had to take it. I just returned it. The next time I went

Scott Benner 13:10
in, finally saving some money, yeah, they probably

Carly 13:14
still charged me for it. Oh, I bet they did, but yeah, so, and that was the third type one in our family, diagnosed at two years old. Okay,

Scott Benner 13:21
geez. Are you all like managing similarly, or do you have different pumps? Or how does that work?

Carly 13:28
Yeah, so we all are on currently the the Dexcom g7 and my husband is on the Omnipod five. He does it all in manual mode, though. He doesn't do any of the like the automated stuff. I know you can with the g7 but he never has done it that way. He likes to have control over, you know, when he's punching into the pump, he doesn't want it to go on its own. So, so for me, Well, right now, I'm 24 weeks pregnant, so I'm more in like an insulin resistance phase right now. However, when I'm not pregnant, I'm not taking very much insulin. I am usually taking maybe, maybe eight units a day. Okay, so I'm still honeymooning even after six years. Yeah, I think I just caught it that early. Did

Scott Benner 14:09
you hear that interview I did with the lotta guy? You know, he had type one, but it pretty, you know, fairly low insulin needs. Then they they ramped up, and then they gave him Manjaro for his weight loss, and he's not using insulin at the moment. Oh, wow, no, I didn't crazy. And I mean, not that he won't at some point. Like, I'm not saying that, you know, I'm not saying the GLP, like, cured is type one, or anything like that. But like, at the moment, he's not using insulin, and it's been for a bit. So it's, it's really interesting, because your needs are still, I would say I agree with you. They're low for having, had type one for for that long, like maybe you are. Lada, yeah,

Carly 14:45
I think a lot of times, if you catch it early enough and there's still some pancreatic function. Now, I'm not a doctor. I have no medical background besides just everyday living our life with diabetes, but I think a lot of times it can almost. Be treated like type two, whereas I think if you you can kind of control it a little bit by diet, because if I, if I'm eating a lot lower carb, I take a lot less insulin, the insulin resistance just improves. Now, of course, it's not a cure, and I'm still going to need insulin. I would still take the basal insulin no matter what, but depending on activity or what I'm eating, I can absolutely cut my insulin needs down,

Scott Benner 15:21
yeah. And most people see that, but you're, you see it pretty drastically. Is what you're saying,

Carly 15:26
Yeah, absolutely. I mean, right now, I'm on three times as much insulin as I was before I was pregnant, and that's just the way it goes. And now this is my third time around in this part of pregnancy with diabetes. So I know it's, it goes way up, and then it comes right back down. And then, especially after giving birth, it's going to go way down with nursing and everything. That's what happens every other time. Yeah, but, and then my daughter, she still takes like, quarter units of insulin for corrections. That's how sensitive she is to insulin, usually, unless she's battling an illness. So we, she and I are both on daily injections, just because I don't think the pump makes sense for either of us, because we take such little doses of insulin. So yeah, so we're all on the we're all on the Dexcom CGM. Literally, one of us is on the pod. And so, as you can imagine, three people on CGM there. There are very few nights where there's nobody beeping.

Scott Benner 16:22
I figured the mail comes to your house. There's, like, one of those heavy stickers on the side of the CGM delivery so the mail carrier doesn't hurt themselves. Yeah,

Carly 16:30
the number of those coolers with the ice packs that we grew in six months, it's amazing.

Scott Benner 16:38
Carly's like, listen, we're losing a lot of money in the CGM, but we have a burgeoning Etsy business where we resell ice packs making up making a ton of money. Yep. Well, I have to ask, how much of your day is absorbed by diabetes? A

Carly 16:55
lot, I would say. So my six year old has had it now for just over three years, and in the beginning, it was a lot more like staring at my phone because she's not home with me. She, at the time, was going to daycare. Now, over the summer, she's in daycare, and then in the fall, she'll go back to school. So she's not with me a lot of the time, so I'm on the follow up a lot, but I would say it's definitely gone down over the years, just as you get more comfortable. And we're kind of the family that while I'm a perfectionist and I strive for like, the most perfect blood sugars for her, not always for me, I feel like I'm always putting her like, like her diabetes is more important than mine, because it's your kid, right? Like, you gotta do the best you can for them, I stay very involved, and luckily, our local school that she goes to, they're great. The nurse is great there. She's okay that I'm really involved. We're a few minutes down the road. I can always run there if I need to. So I would say, I mean, I'm checking, I'm checking my phone. I would say I'm probably mostly on my phone checking blood sugars, like than doing anything else. Okay, probably

Scott Benner 17:58
I'm gonna say no, based on his response to an automated pump. But are you following your husband?

Carly 18:04
So I am not. No. I suggested it once before, just because he was having some lows. And I think maybe he was, I don't know if I was out of town or something, and I'm like, Hey, do you want me to or he? I think he was out of town on a work trip. And I said, Hey, do you want me to to follow you and just make sure everything's okay. And because he was having a lot of really senior lows, I never ended up doing it. He just would check in with me, you know, to make sure he was okay. No, I only follow my daughter, and he only follows my daughter. We don't follow each other.

Scott Benner 18:32
Yeah, I was, that was gonna be my next question, would you let him follow you? I would, yeah, if he wanted to. Do do you think he doesn't want to follow you? Do you think he doesn't want to set a precedent? So you start asking about following him again?

Carly 18:47
That might be it. And, you know, he's an adult. I want to, I don't I micromanage so much with my daughter's diabetes and my own I don't want to be calm, obsessive over his blood sugars. If I noticed he's high, you know, like overnight. If I'm treating a low on my daughter or high on my daughter, I'll wake him up. And obviously, if he's low, if he's beeping, I'll wake him up, because he sleeps through a lot of the alarms. But I'm not going to actively help him manage because he he he knows how it goes. He's been doing this for 35 years, so yeah, yeah, I trust him to handle it. So do

Scott Benner 19:24
you even trust me? I'm getting to something. But like, do you even know what his a 1c is, for example,

Carly 19:29
I do. We do share it with each other. When we have our visits, we'll come home and we'll talk about it. And I think he's in the low sixes, which I believe is the best it's ever been. So he's really proud of that. So he'll come home, come home and say, Oh, it's, you know, it's this, so, yeah. So we're kind of like, we're not in competition with each other for best ANC or anything like that, but we will celebrate the wins when they are there. Yeah,

Scott Benner 19:52
no, of course. And you the same, you'll be like, Hey, I had, like, so you just, it's almost like that end of the day conversation, like, you know, I bought. Didn't do today. I saw, like, you're almost like, hey, you know I gotta I was at the doctor's day. I got my UNC back. Like, it's, it's kind of that not focused, but still spoken about,

Carly 20:09
yeah, yeah, and, or anything, right? Like, he said to me this morning, he's like, this hasn't happened to me in years. He showed me his graph, and he was completely flat in, like, the 70s and 80s all night, last night, and I was like, hell yeah, that's awesome, you know? Like, that's something to be celebrated too, because that doesn't always happen. Yes,

Scott Benner 20:26
like, the weirdest thing to high five somebody over but there you go. Absolutely,

Carly 20:29
we bond a lot over diabetes. It dominates a lot of our conversations. What about

Scott Benner 20:34
the tough parts of it? Like, when you are struggling, or he was struggling with lows? Like, do you find yourself going to him and saying, I need a second set of eyes on this. And then do you do that together, the two of you, and are you guys involved in your daughter's care together, or is it specific to one of you? So

Carly 20:53
for our daughter, it's it's definitely both of us. I have the more perfectionist personality, so I'm going to be the one more looking at detailed things and trying to find trends and trying to brainstorm other ways that we could have a better blood sugar day, or something like that. But he's certainly involved too. I don't sleep through the night. Even if there's no beeping, I'll still wake up eventually through the night. If she's high. If our daughter's high, I'll go correct her, and I'm not going to wake him up to go do that, you know, like, we don't share. If I notice that, I'll take care of it. Yeah. And then as far as for each other, really, just the really, he was having those bad lows for a while, and so I was kind of taking more notice to him and trying to help him out more. For me with the pregnancy, it was more battling the highs. And now I've got that back down where I'm comfortable. So I would say he probably doesn't have any part in mind there

Scott Benner 21:49
the middle of the night and BBB, and you wake up and he's not low, but drifting low, right? Like he's 80. And you look at his graph, you're like, Oh, he's going to be 70 soon. Would you pick up his they don't call it a PDM anymore. Would you pick up his controller and, like, do a Temp Basal off for a half an hour, or something like that, without telling him?

Carly 22:08
I would not, because I don't know how to work the pump, so I don't want to screw anything up. So I would wake him up and say, Hey, I got you. I don't know what needs to be done. Can you do something here? Yeah,

Scott Benner 22:17
you wouldn't have trouble going I look, I woke up. I saw your graph. Man, it looks like you're going to be low. Like, here, get ahead of it.

Carly 22:23
Yeah. Oh, yeah. All right. That happens a lot, especially because, like I said, he sleeps through a lot of the alarms. I have had two times, three times, maybe in the past year and a half, where I was unable to wake him up because of a low or just because he was sleeping. Yeah, and, and I was trying to figure out how to turn off his basal, and I and then I thought, maybe I should rip his pump off, because I want to make sure it's not getting more insulin. So in those two instances that happened overnight, you know, you're racking your brain like, Okay, do I use the Gucci and do I call 911, do I try to treat him myself? So what I've done two times is I've gotten glucose, I guess, crushed up glucose tablets in his cheek, yeah, and kind of rubbed it in and and then gotten

Scott Benner 23:10
Carly. They make a gel, if you want to get it. And

Carly 23:13
I think we, I think we do have that on the line, and think about that, but we have, like, yeah, it's like, in a, like, a little aluminum packet or something. We do have some kind of gel, because we got it for our daughter for school, in case she had a severe low at school, right? But at the time, you know, it's like, two in the morning. That's, that's what I it's weird where

Scott Benner 23:29
your brain goes. Sometimes it really, yeah,

Carly 23:33
and I'm like, and, you know, you think practically too, like, Well, okay, two kids sleeping in the house. Like, what am I? You know, what are my options here? So I felt comfortable enough to try to treat him myself first. And after I, like, loaded his cheek up with the powder, I test his blood sugar, and I think it was like in the 40s or something like that, or in the like, maybe upper 30s. So I knew I probably had some time to treat it. And then he got to the point both times where he was able to then follow commands, hey, chew this, drink this, and then he was able to do that. So yeah, those are, those are scary times. And then, but, but I didn't know how to operate the pump, to turn it off, or anything like that. So once he, like, came to I said, Hey, maybe you need to adjust your settings, because I wasn't sure what to do. I didn't rip it off. Didn't rip the pot off. I was going to, but didn't end up doing it, and then just kind of leave it in his hands once he's like, able to,

Scott Benner 24:26
right? Also, maybe we should do it. Do a training at lunch sometime where you explain to me how to work this thing a little

Carly 24:32
bit. I wouldn't mind it. I think, I think that's probably important. Yeah, boys, you know

Scott Benner 24:36
what I mean, Carly and once your husband is incapacitated, like that, you have to help him. Does it change? Like, how you see him like, you know what I mean, like that. I know this is going to sound strange to some people, but like that masculine feeling you have about him, like, does it lessen, like when you see his humanity and like his like, how easily he could you. Just slipped away. Do you know what I mean? Like, am I making sense? First of all, yeah,

Carly 25:03
okay, yeah. The first time or two that this has happened, I just felt really scared, and he was very grateful that I was there to help him. And it was kind of like a bonding moment. Like, you know, life is fleeting. Be, you know, make sure you say you love each other before you go to bed. All, all that like gooey crap. Right? When this was happening more and more frequently, I would just get frustrated and say, Hey, we have children. What if I'm gone and this happens to you? I actually taught my oldest how to call 911, from her phone. Just recently, we just got her a phone number, just so that we could see her numbers when she's on a Wi Fi. But previously, I mean, this is like, brand new, like, as in, like, 10 days ago we did this, yeah, so previously, she could only make emergency calls, so I showed her how to do that if daddy doesn't wake up. Call 911, this is how you do it if I'm not here, or, you know, run to the next door neighbor's house or whatever, you know. So, I mean, it was frustrating, because I was scared to leave him alone with the kids, like, if I had something for work where I was out of town, right? And I'm like, again too. If you've had this for 35 years, like this should, why is this happening now? I don't remember these things ever happening to him before, and we've been together now for 14 years. So, so yeah, maybe you

Scott Benner 26:18
should switch that thing over into auto and let it help him stop his lows.

Carly 26:21
You know, we talked about that too, and there, I think there is a reason behind these extreme lows. We actually just recently found out, in the last couple weeks, he has a lot of symptoms of what we think is primary adrenal insufficiency. Oh,

Scott Benner 26:36
wow, look at you figuring things out. Excellent for you. Yeah,

Carly 26:39
so he he was in the hospital twice in the last 18 months with low sodium and, like low blood pressure and and just looking back, all the symptoms make sense now, these extreme lows he's been having, where he is completely blacked out, catatonic. It's all part of this. So he's actually, he was is endocrinologist this morning to get more information, but he started on a steroid over the weekend, and he's already feeling better. And then I and, you know, I feel kind of terrible. I'm like, well, shoot, we didn't know that either.

Scott Benner 27:09
When I was telling you to pull your shoe together, I didn't know about that. Sorry, exactly.

Carly 27:13
I'm like, now I feel like an a hole.

Scott Benner 27:15
Listen, you know, that's a good catch. How did you guys figure that out?

Carly 27:19
So, interestingly enough, he had just like, been feeling so crappy for a few weeks. And finally, I said, Hey, you know what? I think you need to go in get some blood work done. Something's not right. The morning after his blood work, his doctor called him about six in the morning from home and said, Hey, you got to go to the ER, your sodium is 116 I think it was. He's like, you gotta go. It's, this is an emergency. So he went and I had my endocrinologist visit up to like, you know, just like a follow up in pregnancy that morning. So I had to bring the kids with me. So I apologize that. Hey, I'm sorry to bring the kids, but my husband's in the hospital. She's like, Oh, what's going on? So I explained a little bit, and she's like, are they testing him for primary adrenal insufficiency. And I say, I'm like, I don't know. Do you think I should tell them to text

Scott Benner 28:04
them they will be hold on a second. Yeah.

Carly 28:09
And lo and behold. I mean, just kind of funny. She's never met him before, never treated him. Three symptoms I described, and that's the first thing she thought of. And sure enough, that's, we don't have the official diagnosis. But, I mean, that's, that's where it looks like a tiny and like cortisol is nearly zero. ACTH, I think is the other one is sky high. So it's, it sounds like, that's what it is. And so now he has his second autoimmune disease, yay.

Scott Benner 28:36
Trust me, there'll be more. Don't say that Hardin's nurse practitioner. Her very first nurse practitioner figured out that Kelly had hypothyroidism, really? Yeah, by I was just talking to her one day, and she said she's the first time her name was Sakina. Was that her name? No, I'll figure out her name, because she deserves credit. A large portion of what I do on the podcast is because of her, because she said that day something that had never been said to me before. Did you know that people with type one diabetes often have you'll find other autoimmune issues throughout their families. And I was like, Oh, I didn't know that. And then I said, my wife, blah, blah, blah. And she goes, Yeah, you should probably look into like, a thyroid issue for your wife, like she's the first person who, like, said that to me out loud, wow,

Carly 29:22
yeah, interesting. Like, a third party that's, like, not involved at all, is like, hey, what about this? And it's spot on. She

Scott Benner 29:27
was just, like, sharing information with me, and yeah, and I put some things together, asked another question, she made a statement. And then, you know, as people with thyroid know, sometimes it's hard to get doctors to help them. It took us, like, seven years for a doctor to give my wife medication, but, but, yeah, that that was the problem. So, Jesus, yeah, it's really something. And I'm also not. I'm not picking on your husband, by the way, but you know, in general, listen, I was a stay at home dad for I became a stay at home father when Kelly was in her third trimester with Cole. Yeah. Least 24 now, and I have, I mean, you know, I started this podcast 10 years ago, and my kids would tell you, I'm not much of a stay at home dad anymore. You know, they're also older, so, you know, they can cook for themselves, but I was a stay at home dad my entire adult life. Basically, I was doing it before it was a thing. I was doing it, you know, you didn't know another guy that was doing it. Like, I was early to the party, and I did it for a very long time. My wife still looks at me like, I don't know what I'm doing with the kids. She'll still be like, What are you doing here? And I'm like, you know, you like before COVID And they like, you know, sent everybody home to work. You were never involved in anything like I raised these children. I mean, not that you weren't here, but, I mean, let's be honest, Carly between you and me, right? Like, that is me pretty much for like, 90% of it, and she still looks at me like, what's dummy gonna mess up? It really struck me when you were like, you know, hey, if I leave the kids with you and you can't wake up, like, what are we doing here? You know, like, because you already did, you wouldn't have trusted him if he didn't have diabetes, is what I was gonna say. But does it work in reverse? But going back to my initial question, have you ever been so low that he's needed to help you, and do you think that that's changed your relationship at all? I

Carly 31:17
had one instance about a year ago where I did the age old mistake, where I gave my my basal dose, but I did it at the fast acting insulin before bed. And he did go and get me orange juice from the gas station. And he made sure that, you know, I was good. And I think I had to eat like two, like maybe 175 carbs or something to make up the difference? Yeah? So I just did it slowly. I took lots of notes, like I never was not in control. That makes sense. Like I'm watching the graph. I'm pricking my finger every, like, half an hour. I'm eating slowly because I didn't want to, like, totally blast my body with all these carbs, so I didn't think I'd actually need that many. Yeah, so anyway, but he was there with me, like he made sure I was okay.

Scott Benner 32:02
How did you know to handle that so well? Because people freak out a lot of times when they do that. You

Carly 32:07
know, honestly, I, and I'm not great at math, but I'm like, You know what? I think if I just treat this like a math problem, like if I accidentally did 175 carbs worth of insulin I should eat, you know, plan to eat about 175 carbs over the next four hours. I know that the insulin is going to wear off in about four hours, completely two out, you know, peaks in an hour, like starts going downhill after that, after four hours, I'm good to go. So, yeah, just kind of approaching it from a logical standpoint. Try not to freak out. However, we did that. Do that once with my daughter too, and I can tell you, I was not as calm because she was sleeping and little Yeah, I think at the time, she was probably on like, oh my gosh, a unit and a half of basal, which is probably like 60 carbs for her, so it wasn't as hard to make up her Yeah, difference. But I remember too. I was doing intermittent fasting at the time, and I'm like, damn it, I'm breaking my perfect fast, you know, like I had a great day. My blood sugars were so good and and I'm like, I totally, you know, I totally bet on this, and now I have to totally blow it and eat like, all this sugar and crap.

Scott Benner 33:17
But, well, I think that experience can be I've had this thought frequently, but I think that experience, I know it starts as a mistake, but if it's handled the way you handled it, I think it levels up your understanding of diabetes. Because, like, you would never sit down for 175 cart meal, because you'd say, oh gosh, that's a lot of insulin. I don't know how it's gonna work. Like, you know you would not that you I'm not saying that a meal should be 175 carbs, but I mean, like, you know what I mean, you would never do that on purpose, but the minute it happened by mistake, you were like, Well, all I really did here was Bolus for a meal of 175 carbs. So what's the difference between a 40 carb meal and 100 carb meal? You thought about it backwards, which is the thing that I try to ask people to do sometimes, and like in the Pro Tip series, stuff like, don't just think about, how does the insulin impact the carbs. Wonder about how the carbs impacts the insulin, so that you can kind of think of it more holistically, which is what you did. That's really what's well done. So my brother lives in Wisconsin, probably pretty close to where you live. Okay? And I visited the food there is, I had trouble eating at a restaurant when I was there, really, for all the like, fried options. Like, not a lot of not fried options. Like, is that your finding or was I just in the wrong places? I mean,

Carly 34:39
there's definitely a lot of fried options, definitely a lot of cheese. But I mean, I think with the whole healthy eating trend, the gluten free, the allergy friendly, there's a ton of those kind of places popping up. And I think too, just a lot of options on, like typical menus, where they've got where you can have a lettuce wrap instead. Out of, you know, a bun or whatever. So we, we don't eat out a ton, just because it's, like absolute, like hell on the blood sugar, especially for our daughter, no matter what she eats, that's out. I mean, I don't know what they put in food, but, like, it, did you go to Culvers when you were here? Or have you been to a Culvers? I know they're not just in Wisconsin anymore. I don't think I was No, that's one of her favorite places. And, and, yeah, it's about 100 carb meal for her, which is, we never, I mean, this is, like, treats, right? We never do this kind of stuff, but we know if she's eating Culvers, she's got to eat it by like, 5:30pm because we're going to be up for at least eight hours babysitting her blood sugar, because she will have like, three or four waves of high, like high is coming from the French fries or the fattiness and the cheeseburger, the fattiness and the custard. So, yeah, we don't eat out of time because of that, but, but I will say that was one of I've probably listened to that podcast at least three times about the Fed delayed fat rise. I don't remember what it's called, but like surfing those fat waves and protein like over several hours and trying to understand how the body metabolizes that differently than carbohydrates. That is one that I have listened to multiple times.

Scott Benner 36:11
Yeah, I a lot of people say that actually, and it's, it's great information for people, mostly because doctors won't. They don't bring that up ever. It's, count the carbs, put in the insulin. That's it. Wait three hours if you're still high, okay, you could Bolus again. You know, it's pretty much the end of it. The

Carly 36:25
first time I learned about this was on the Facebook support page, yeah, I never knew you had to Bolus differently for for fat.

Scott Benner 36:32
Yeah, no, I know. I don't think anybody knows so. But hey, why tell anybody? Right? I

Carly 36:37
know it's only your life and your health. No big deal. No reason to bring it

Scott Benner 36:41
up, so you don't eat like that very frequently. I don't know I was I found myself out. I had a very like, basic thought. When I was out, I was saying, I don't understand how everybody here doesn't have type two diabetes. Like, this food is rough. And just like you said, cheese and and grease and like, I'm like, my god, this is this got to be hard on people. And I did find myself thinking, I don't, I don't know how I could take Arden to a restaurant here. I wasn't, she wasn't with me, but it would have been like, well, I guess, just like you described, actually. And not that it's specific to one place, but it's always stuck in my head. Because when I first met my sister in law, she was like, Oh, I brought like, a treat that, you know, it's a thing my mom and I make at Christmas time. And it was, you know, the pretend popcorn you can buy in the grocery store. They're almost like packing peanuts, you know what I mean? Oh, sure, right. And she brought them soaked in caramel sugar. Oh, wow. And she was like, Yeah, we make these at Christmas. And I was like, to murder each other with I was like, what? Like, what is this exactly? But it was just like, as I was talking to her about it, and I don't think she'd be embarrassed, like it was just the was just the family tradition. And I was like, I was like, Oh my gosh, that's crazy. And I it made me wonder, like, what other things exist in other places? And then people come on, like, very frequently, people like, um, like, Mexican heritage, come on. And they talk about how they eat, and they're like, I have diabetes, and everything I eat is hard and, you know, but this is what we eat, like. It's usually how it goes after that. So anyway, okay, so what makes you want to come on, like you feel like this is a pretty like, rare thing being one married to one parent of one,

Carly 38:19
yeah, I think when, when I think about our story, and I always have to specify, I got type one in pregnancy, not gestational diabetes, right? Like, there's always, like, I always have to make sure people understand that. And so I think I thought it was kind of rare. I've never met anybody in our situation, so yeah, and just kind of, I'm sure this comes up a lot. I've seen it posted before where people are worried about having another type one child when they already have one, and maybe holding off from having more children. And I will tell you, after our first was diagnosed, we already had our second, so no going back there. But when we were debating on a third, we always wanted a third, but it took, I mean, it almost a year. I think, of like soul searching, praying, talking to doctors, talking to family friends. What would you do? Would you have another child knowing that this child, or, you know, the one we already had, was going to get diabetes too There came a time where I'm like, It's too cruel. I can't bring another child into this world knowing that they might have this lifelong sentence, right? And then, I think honestly, through a lot of prayer and a lot of thinking about it, and I'm like, you know, whether or not it's diabetes, it could be anything else, it could be cerebral palsy, it could be cancer, it could be any number of things, any number of birth defects. I mean, there's so much out there. Is it really worth not having, not completing our family like we think on a chance that we could have another diabetic or two in the family? We ultimately decided, you know, it's not like it's it's not worth not. I think we would always regret not having another child. Okay? Yeah, so that's a big thing too. I want, I think it's important for people who are on the fence too to think about it that way. You know, if it's not this, it could be this, or it could be that.

Scott Benner 40:09
Listen, I've heard people work it through from both perspectives, and I've understood every decision that people have come to. You know, I get it when people say, I just don't want to take the risk. And I get it when people say, Well, I have diabetes and I'm okay, and they'll be okay too. I understand. I really do. I understand every perspective on it. So, yeah,

Carly 40:33
I think it's important not to be discouraged if that, if having another child is something you really, really want you. And I think too, right? You have to take responsibility, just like financial responsibility, before you have a child, make sure you know what you're doing. You're controlling it the best you can. You're going to give your future child the best start in life and set them off the best way you can, whether it's anything, right? I mean, it's not just limited to, like, a medical, a medical thing, it's anything financial responsibility or just being a kind person or whatever, like you, it's your job to mold this person, and if you're taking that commitment to do that, then

Scott Benner 41:13
yeah, hey, listen, Carly, it's like everything else in life. If it turns out great, you'll look like a genius. And if it doesn't turn out well, well, then you screwed up. So yeah,

Carly 41:21
talk to me in 10 years, and we'll see how many more diabetes we have, hopefully zero. Yeah, exactly.

Scott Benner 41:25
Well, no, like, we're ready 25 years from now, when your middle kid is like, I don't know, like, you know, doing so incredibly well, you'll be like, see, we did the right thing. And you know, somebody else's kids gonna be shooting heroin with their insulin needles, and they're gonna be like, Oh, I knew we shouldn't have another kid? Oh man, yeah, you can't. I mean, it's gonna, life is gonna be what it's gonna be. And right you get in front of it, and you you do what you did, you think about things and make informed decisions. And then along the way, there's gonna be twists and turns, and you're gonna have to keep thinking and keep making more decisions, and just hopefully, you bump and nudge your life well enough that it ends up in a place that you look at and go, Well, that one, okay, yeah, absolutely. That's pretty much it. As far as I'm concerned. I don't think you can control things. I don't think you can stop bad things from happening anymore, that you can make good things happen. So right, just do the best you can, best decision on the day, and then just keep paying attention and hope it ends up somewhere. You said you talked earlier about, uh, crying in your car, which seemed to be a theme for you at some point. And I thought to tell you, even though it was completely disconnected from this, I'll share it with you here. I cried in my car last night. Oh, no, don't be sorry. It was, it was, I got, I ran out for something, and I started thinking about, like, my son's situation, and how he's just probably not going to be around much anymore, you know, because just of his age and where he is in life and everything. And, man, it just like, it made me upset, you know. And I was like, Oh, I just found myself thinking, I just need a little more time. You know what I mean? Like, like, here in this space, like, how do I stay here a little longer without adversely impacting his life? Like, I want him to move forward and grow and all that stuff. I wanted that for everybody, you know, but I'd like to stay here just a little longer. And then that made me, somehow my I think it was really tired. I think that's important to point out. You shouldn't think about things like this when you're tired. And then I thought, like, Oh, perfect time. If he was six and Arden was one, she wouldn't have diabetes. Like, I'd like to sit in the living room for a couple of days like that, just, just everybody just sit there, you know? And and I made myself all upset anyway. I was embarrassed for myself, and I was by myself.

Carly 43:43
Anyway, I feel like as a parent, you have those. You have those times where you're just like, Man, where did the time go? I will tell you though I have not once taken for granted handing my four year old snack and not having to think about weighing it how much medicine she needs to eat it whenever it's just her, and I can just hand her something, oh, man, it is, like the best feeling in the world.

Scott Benner 44:07
Arden had to, um, change a device last night. And Arden got sick like, a week or so ago, you know, like, constantly, like her, her throat was crazy. It looked like, like, tonsillitis, strep throat, like, something like that. And we went to she went to the doctor, and the doctor's like, Oh, God, that's horrible. She's like, Yeah, great. But with test, test not strep throat. It's not this, it's not mono, it's nothing. It's just the viral thing, like, it'll end. And they just sent her home to suffer, basically, yeah, and she slept on a chair in the living room for three days. She wouldn't even get up and go to bed at night and just wrecked, you know, like, really wrecked. Her blood sugars were bouncing and, like, everything was a mess. And she suffered, I think, Monday, Tuesday, Wednesday, but last Friday, we had to, and, I mean, had to go to Georgia to get her stuff out of her apartment. Mm. She's not going back to school there. We only had the the room for a certain day. And I'm like, we needed two cars to accomplish it's a 700 mile drive one way, and it had to be two cars. Like, it's not a thing I could do on my own. And I was like, What are we what are we gonna do? You know? And she just stood up on Thursday, and she's like, All right, we're going tomorrow. And I was like, I don't think you should. She goes, What's, what are the other options? And I was like, I don't know. So she drove with, you know, by herself in a car. I drove by myself in a car. We went 700 miles. We drove like, I think, we drove eight hours the first day. We slept a few hours. Got up, drove, you know, the other seven hours, or whatever, got there, had dinner, went to sleep, woke up at five in the morning, packed our cars up and drove straight home. It was like, 14 hours home, yes, and in the last hours of the trip I'm talking about from like Baltimore to home, it was in the middle of that torrential rainstorm that happened. So, like, there were times where we were just like, we didn't even know where we were driving. Like, I'm not lying. We got to a rest stop at one point, like we just had to take a break in the middle of it. And Arden goes, I was following you. I did not know where I was on the road. And, yeah, it was, like, really bad, right? Anyway, yesterday we go to our endo appointment because we're, like, stuffing in our endo appointment before she goes back to college, so we can make sure we have, like, everything we need. And the endo looks at her and goes, and this is where you guys are. Most of you are not going to be lucky, because Arden's endo is a concierge doctor. We pay her cash, we turn it into our insurance. Later you get, like, an hour long, you know, visit with her, and she also helps Arden with her thyroid. And, you know, she's a good she's a really good doctor. And she looks at Arden, she goes, Honey, what's wrong? And Arden's like, I have, like, you know, because she can barely talk. And the woman's like, Oh my God, let me see. And she looks in her throat, and she goes, there's plaque back there on your on your tonsil, and, you know, you have strap. And Arden goes, they told me I didn't have strep. And the woman's like, you know. And she's like, gave her a prescription for, you know, an antibiotic and, and she's like, you know, do we want to, you know, do think we should get your lungs X ray? I hear kind of like a hollow spot in your lung, but I'm you're getting air all the way down, but, like, just really good medical care, you know what? I mean, it's awesome, yeah. And then we do everything blah, blah, blah for the the endo appointment that all goes well. Also, I'll tell you one other thing we talked about while we were there. This is going to be a long way. To be a long way to the story. Martin's taking a GLP, which she initially started taking for insulin resistance. It ended up helping with PCOS, symptoms, very specifically, really bad acne, which is completely gone now. It helps her with her periods. It really eliminates a lot of her insulin need. About 20% of her insulin need just changes everything. But she had lost weight to the point where we were like, This is not like. She lost too much weight, you know. And so we took her off it for the last month so she could regain some weight, and then we are putting her back on it, but not at the dose that comes in the injectable pen. We're limiting it by giving her less. And for people who want to know how that happens here at the house, we are injecting the pen into a clean, sterile vial and then drawing out some with an insulin needle and giving it to her that way. And just sit there and have this great conversation with a doctor who's like, Yeah, that's great. Like, I'd start, what did you start with? I said I started with, like, point 125, like, half of it. And, you know, we just talked about, you know, how we're gonna watch it, you know, we're gonna watch to see when our insulin needs change in the week. We're gonna decide that that's gonna be the next injection day, so if we can get it to go longer than seven days, whatever. Again, you're talking to like, an intelligent person who's willing to figure out a problem and not just say, well, the box says this, or, you know, like, that kind of thing. And you're sitting there, oh yeah, also hard to find, yeah, right? And you're sitting there feeling really lucky about all this, and really lucky like Arden. Am I telling you the story? Because Arden is in the best situation a person with type one diabetes could be, right? But last night sitting there sick before the antibiotic had kicked in or anything. She had to change a device. And I watched her face. She was like, uh, like, not now, you know what I mean? Like, I don't feel good. I haven't felt well for a week and a half. I just did this trip back and forth. I'm exhausted. I'm tired, like, I can't believe I've got to change this device right now. It's the simplest thing, and still, it only took a couple of minutes. But you made me think of that whole story when you said it's not lost on me that I can hand a snack to my other kid and not think about it. Yeah, you said that. It made me think of this entire week, and people are never going to know the impacts of type one, even when you have it worked out and you're doing really well, it's still impactful, significantly, I think,

Carly 49:46
absolutely, once you throw a wrench like the sickness or, you know, even the road trip on its own without being ill, the stress of that, any of that, I mean, it's, it's amazing how much your well oiled machine is just. Just seems to go, can go haywire a little bit, and then it just seems like the worst thing in the world to even think about, like changing your device or doing anything that that's management. I just want

Scott Benner 50:10
people to know that so they can have some grace for their kids, or, you know, spouses or whoever, when they're like, you know, when you say things like, oh, they didn't want to, they don't Bolus for their meals. Like, people say it like, oh, you know, I have a problem like, it they don't Bolus, so they won't Pre Bolus. And it all, it all sounds so simple. And, I mean, listen, it is. It's like, you know, it's not, not simple just to Pre Bolus until you take all this other stuff into account. And like you just said, like, after 10 hours in the car with like, three or four more to go, when we drove into this terrible rainstorm, like we were bolusing just for the adrenaline, or driving in the rain for hours. I was like, you know, I'm like, texting, or I'm like, the next time you we slow down, or something like, put a couple more units in. And then as soon as, by the way, as soon as we got done with that drive, as soon as we got to our house, her blood sugar started falling like crazy, as soon as the adrenaline was gone, and, you know, so we fed it and everything. But even that, like, we're home, Jesus, like, one in the morning, you know, we finally got home, we're all sitting on my bed because Kelly's like, Guardian bed. And we came in and sat down, and I was like, Arden, you're gonna get low, like, really soon. And she's like, she looked at me a little like, you know, she's getting older now. So she looked at me like, I don't need your help, buddy. I've lived on my own and, you know, and I get it. But I was like, No, seriously, we put a ton of insulin in for all that adrenaline while we were driving. The adrenaline is going on. You're I see it already. You're getting low. It's gonna happen. And she's like, Yeah, yeah. And then she ate this little pack of, like, cookies, and I'm sitting there thinking, that's not gonna do it. Like, that's that's not enough. It's not fast acting enough, and it's not enough carbs. It's just like, it was maybe, like 12 carbs, and I was just like, that's not gonna work. Do I say something? She already, like, we just went through this whole thing. We're exhausted. Like, I don't want to be telling her what to do. But she kept drifting down, drifting down. And I was like, Arden, this is it. I'm like, You need something fast acting. And she said to me, I live by myself with this. I know what to do. But it wasn't anger, it was she was exhausted, and it came out very matter of factly, and I recognized it as you might know this, and people listening might know this, but like, if you get low, you turn, you get you can get that. Um, oh, I guess I'm gonna die like that. Like, you know what I mean? Like it your concern for yourself can go away. Does that make sense? Have you ever you seen that? Yeah, and I recognized that on her face, like she wasn't complaining to me as her dad, who's bugging her, she was drifting into that. Like, whoa. I guess it's okay if I go like, and I was like, so I just stopped talking to her. I got up. I got um, things to fix the low blood sugar with. I grabbed her stuff, and I was like, we're gonna test your blood sugar. You're drinking this, and you're gonna have all that. And she was just like, Okay. Like, she she got into that. Like, okay, thing. And no kidding, like her, CGM said 60, but the finger stick was 44 and I knew I could tell just by that little change in her personality, like that, it was happening, but I've seen it before, so I know what it looks like. And we stopped the low right there. It was not a big deal, and we leveled it off. And that was all good, but then all I could think of was her words from earlier. I live alone. I know what to do, and I kept thinking, except in the one situation where you didn't, and then it's something I'm gonna worry about the rest of my life. You know what? I mean? Yeah,

Carly 53:32
yeah. That sounds a lot like my husband, too, where he's just like, he's like, Yeah, I treated it. I'm good. Like, okay, well, you're still not can tell something's wrong, like you're not all there, sit down. And a lot of times I have to be like, sit down. Drink this, because he's just like, I'm fine. I'm good. Now the end, on the other hand, the spicy six year old, she gets like, angry and like, thrashy and yells a lot when she's low. That's how we know she's having a bad low, because she gets crazy, like, huge, she throws a huge tantrum, and she just has no control over her body. It's just so interesting how it's different. It's so different for different people she we always know, like, if she starts throwing a fit, we're like, alright, let's check your blood sugar. And typically, yeah, I mean, she's having a really bad low, and then, and then trying to, trying to tell someone like that to do something, you know, that's like, the last thing they want to do. So you gotta try to make it, make it like it's their idea, you know, play the little toddler reverse psychology game, or a little kid reverse psychology game, they get older, it

Scott Benner 54:35
stops working, though, yeah,

Carly 54:37
yeah. I feel like it's already, like, not working as well as it used to on her.

Scott Benner 54:41
But so do you, I mean, with the advent of tea sealed with like stuff like that, do you think, Oh, I'm gonna test my other kids, and if I see this coming, maybe I'll try one of these infusions to hold off type one. Have you ever considered that I have? I.

Carly 54:59
I just always figured, because I think it's for, like, age eight, I think is the youngest, or something like that. So for me, it always just seems so far off. If she has not developed type one, or she's early enough in the disease by that age, I would certainly consider it especially because that's four years off from now. So, I mean, it will have been out there for that much longer, more studies, more you know, people have been on it to see the like efficiency of it. So I would consider it

Scott Benner 55:28
is something you would think about if it came up. Yeah, okay, yeah, let's see. T cell does approve. You're right, in individuals ages eight and older, who are in stage two of type one diabetes, which is characterized by presence of two or more auto antibodies and abnormal glucose tolerances, but without overt symptoms of diabetes. Okay, yeah. I mean stuff like, that's coming. And here, that's obviously a drug that exists. And, you know, they they say, can it? Can hold off the type one for hopefully a year or more. And I think they hope it's longer. But I think right now it's FDA approved to say, you know, whatever time they say. I mean, not that I didn't really appreciate your, your thought process on having more kids, but when the rubber hits the road, you're going to be like, uh, what do we do? And how do we how do we get ahead of this? So I figured you had thought about it already,

Carly 56:17
yeah, yeah, certainly. And, I mean, I didn't know how long it would put off, type one. I mean, a year seems like nothing. You know, like, I'm like, Well, I don't know. I hear you. I don't know. It's a tough choice. Yeah, it's a tough choice. Are there other things

Scott Benner 56:30
that you want to talk about that we haven't thought of?

Carly 56:32
I don't think so. I i have a, I guess I have a couple stories about, like, my daughter's head, she's had one hypo seizure. My husband had one hypo seizure a few months ago. I don't know if you want any info on I think you're

Scott Benner 56:46
in the right place to tell that story. So go ahead. Sure.

Carly 56:50
Okay, so my my six year old, she had a history of actually, febrile seizures from high fever and so she has, unfortunately had two of those. The first time it happened, we had no idea what was going on, so we test her blood sugar. Of course, thinking it was a Hypo seizure, it was not so that had happened on two occasions. And one morning before school, she had, this is when she was in 4k so she was four, I dosed her for her breakfast. She wanted a smoothie, so I made her smoothie, and her phone says she was maybe, like 60 or something like that, so the smoothie was almost ready. I gave it to her to to drink, and she starts, like, pushing it away, you know, getting that kind of thrashy attitude that I was describing earlier, and, you know, just really defiant and and not listening. And this is one of the first times we actually saw this behavior. So we did not know yet that this was indicative of a low especially because the phone wasn't even beeping yet. We test our blood sugar. Oh, I can't remember what it was, but it was definitely not like 60. Like the phone said she was more. She was in the 40s, I think so. The first thing I did, I'm like, Okay, well, I see it, there's fruit snacks right here. Eat these fruit snacks. I figured she would be willing to eat those more than, like, glucose tablets. Now, looking back, of course, glucose tablets are faster. I should have done that. However, I was just trying to piece right here to eat something. Get something in her body, Yeah, unfortunately, it was too late. She get got that far off look in her eye like she has gotten from her febrile seizures, and I knew she was gonna have a seizure, so the first thing I did was I picked her up and I, like, put her in the bathtub, and I had, I told my husband to go get the glucagon, and then I had to swipe out all the fruit snacks out of her mouth, because I didn't want her to choke, because she had started eating them, but she hadn't swallowed them all. So I'm trying to remember when, like a little baby is is choking, how you're going to be really careful about swiping out, you know, the food out of their mouth. So I'm trying to get the food snacks out of her mouth. I'm on the phone with 911, go get the glucagon. I administer that to her, get her out of the tub and just kind of like, layer on her side and just hold her till they got there. And luckily, we have the fire department's very, very close to her house, so they were there in less than five minutes. And yeah, and it was scary. It was unlike the febrile seizures, I would say, just because I know she's going to come out of the febrile seizure. Like it's never easy to see a seizure, at least with those you know, she's coming out, and it's not a health emergency, it's not a medical emergency. Whereas in this one, I'm like, pleading with the paramedics, and, you know, they don't know. They're just, I'm like, is she gonna wake when is she gonna wake up? When am I gonna know she's okay? And they're like, We don't know. You know, we're gonna have to take her to the hospital for, you know, observation. And so of course, that's what they did. They and she was, she was getting she was really sick. She was vomiting everywhere. They get her in the ambulance, and they have to cut one of her favorite dresses off of her so that they could give her an IV. We go to our local children's hospital, which is probably about 25 minutes away, but it's the best place for her to be. So that's, that's always the. The best place to go. And, yeah, it probably took at least three, four hours for her to completely come out of it. And I had to call the school. Yep, Deanna is not gonna be at school today. She had a Hypo seizure. And they're like, Oh my God. I'm like, I know, but yeah. Then after that, she was okay. And I would say she's probably been close the lowest reading I've had on her since was ello on the meter, which I think is below 20, and that's only happened once, and that was swimming on vacation. So that's always one that's so hard to okay every half hour, let's get out of the pool make sure that your blood sugar is okay. Yeah. So, yeah, that was that was really scary. And I had never seen my husband have a seizure before, and he had had them as a kid a couple times, but never in his adult life. And I got home, I took my youngest to lunch. My oldest was in school. I took my longest to lunch one day, came home and my husband was in his trunk and it was running, so I figured he was probably going to go run an errand or something, but the garage door was shut and he was he was still in there. So I was not in the not in the garage. He was outside, but the garage door was closed, like he would have closed it and probably left right away. So I thought it was weird. He was in his car, just sitting there. So I go outside and his hands are, like, clasped together so tightly I can't, like, unclasp them. He's like, shivering, like shaking. He's sweating, like drenched in sweat. I can't talk to him. I can't get a response out of him. So I figured he was having a seizure. I couldn't find his phone to see what his blood sugar was, so I went and grabbed a meter, picked his finger. I think he was in the 40s, which he's been lower, but I think we looked back on it, he had been low for an hour and a half, probably in the 50s and 40s. And again, I'm like, Okay, do I again? I got my four year old here. She was three at the time. I'm like, do I do I call an ambulance? Do I try to, like I've done in the past overnight, where I've gotten the glucose in his mouth? Do I try to do that. And I figured, okay, I don't know how long he's been like this. I think I just need to get emergency help here. So I call 911, I grab the glucagon, and we have the vaccine me. So for for my daughter and for him, we use the vaccine me so that actually like the needle. So I get it up, I get it up in his nose. I'm on the phone with an ambulance goes on their way and and then, of course, they're because he's an adult and he's behind the wheel of the car. They're like, well, we have to investigate this. As you know, he's unconscious behind the wheel of a car. Like, had he been drinking it? Does he have a history of drug use? I'm like, No. I'm like, Dude, look at his meter. I just checked it. He's like, 42 this is a low blood sugar situation. I can guarantee you, that's what's going on. But they had to look through his car. They found the vaccine. And they're like, what's this? I'm like, Dude, it's

Scott Benner 1:02:51
crack. What do you want from me? Jesus,

Carly 1:02:56
yeah. I'm like, this is the emergency, man. I'm like, why don't you talk to your EMS. That's here. They'll tell you what it is, because you're probably not going to believe me if you already think he's like a crack addict behind the middle of a car. So anyway, once we got that all cleared up and he was he actually came to in the ambulance before they left the house, but they still took him to the hospital. And he told me, he's like, he's like, I remember going down, we have a pretty steep driveway. He's like, I remember going down the drive. Down the driveway and asking, am I dying? Like, am I dying? Am I? Where am I? Am I gonna die? Because he had no idea what had happened

Scott Benner 1:03:32
as he was coming out of it, going towards the ambulance, he had that thought, yeah,

Carly 1:03:35
yes, yes. And then a couple things,

Scott Benner 1:03:38
did you ever figure out what led to it? So I think,

Carly 1:03:41
as I think is pretty common, especially if you have more than one person wearing a CGM that beeps, there's the alarm fatigue. You hear it, you're like, Okay, I'll take care of it in a second. He was, it was during the work day, so he was working. I think he had a meeting because he was supposed to come to lunch with us. And then he said, Hey, I got a meeting. I can't I can't come. So I think he was probably in his work meeting and didn't want to leave that to go treat. Of course, looking back, could have prevented things, but, you know, I mean, it's, you're like, I'm fine, I'll be good for a few more minutes. And then a few minutes turns into a few more minutes. And like I said on the CGM, it looked like, maybe, like 45 minutes to an hour, and 15 minutes he was low for, yeah, how long he was out of it? I have no idea. Because we were gone, we were out to lunch,

Scott Benner 1:04:27
you also don't know how low he really was, even though, you know, you're wearing stuff, it could have been lower his blood and and it's possible his liver, you know, dump some glucagon and help bring him back up again. He could have been much lower than that at some point. So I know he's not on here to talk to, but man, I think he'd like the automated features in an algorithm. They do such a good job of keeping you from getting low.

Carly 1:04:48
I agree. And it took him, I think he's only been on the pod for maybe four years. Maybe because he was, he has this around. Rational fear that it's just gonna dump, like all the insulin that's in it in his body. So it took him a long time to even go on a pump. So I think he'll get there. He'll trust it enough he'll get there. He just needs to have that little bit more of control right now, just for now, but, but again, too, this was in February, so looking back, I mean, this could have been his, like, secondary auto immune, you know, oh, sure, adrenal insufficiency could have been a a factor in this. Because, like I said, he never, he's never had episodes like this. These are new within the last two years, so it's very likely that maybe this new onset is causing it? Yeah, if you

Scott Benner 1:05:42
have questions about that, there are people in the Facebook group who have that as well. I think you'll get a lot of thoughtful answers if you post about it in there. I,

Carly 1:05:49
you know, I actually did a few days ago. And yes, I did get, oh, and I forgot her name, I think it's Sarah. Yeah, she was very, very helpful and helped, you know, told me some of the tests that I should have him request. And his endocrinology point was originally scheduled for two and a half weeks from now, and that was my post. I said, Hey, this is what just happened. These are his numbers. He's also type one. He's having this terrible lows this two and a half weeks. I mean, is this like a death sentence in the next two and a half weeks? Like, how urgent? How much do I have to push on this? And she was like, you absolutely need to push on this. And we did. And he got in today, which was like five days later. So yeah, she was very encouraging. And I know there's a couple podcasts that she dropped for me that talk about the type one and Addison's together, so I haven't listened those yet, but I gave the numbers to my husband too, so he could look them up. And, yeah, we'll definitely be listening to those together to learn more about how the two go together and just get some more information.

Scott Benner 1:06:48
I hope they help. And I appreciate you doing this. This was really terrific. You were fantastic. Thank you. I appreciate it. Thank

Carly 1:06:53
you for having me. I you know, I'm like, if it helps somebody great. If not, hopefully, at least it was interesting.

Scott Benner 1:06:59
Oh, interesting. It was a lot of fun. I don't know why I think this is fun. Somebody said to me the other day, like, what do you do? So it's a weird you're on I was on vacation, and people were like, what do you do for a living? And I'm like, I have a podcast. And it's the same thing every time. Like, younger people are like, right on. That's those are my goals, baby. You know what I mean? But older people look at you, like, wait, you pay a bill with that. Like, you don't even like, it's very it's very interesting. Like, the response you get back, and I started talking about it, and like, how much I like it helps people, and like how much I enjoy making it and everything. And I think they were just looking at me like, you enjoy making a podcast about type one diabetes? And I was like, No, it's like, it's about people, and they tell their stories, and you get diabetes information inside of the stories. And I know they just stared through me, but no lie, their younger kid that was with them looked at me like I was a baseball player. They're like, That guy makes a living making a podcast like and they realize the generational difference, like older people look at me like I live in my mom's basement. You know what? I mean? It's really interesting, but I really enjoy I love so I told them, I was like, Look, pays my bills. That's great. I love doing it. Like, obviously, I'm super chatty. This is perfect for me. And I'm like, and it helps people. Like, it sincerely helps a lot of people. I say it's just perfect. Like, I don't think I could do anything that I would enjoy more. You know, just to think that, like, this thing happened to your husband, and that we actually have episodes that he could listen to to help understand that. Like, if you would have asked me 10 years ago, do you think one day you'll have content for people to help them, if they have Addison's, I'd be like, what is that? You know, but like, just kind of all learning together. And, yeah, you did that for somebody today, so I really appreciate

Carly 1:08:39
it. I hope so. And, and, yeah, I've learned countless more things from the Facebook group and the podcast than in any medical setting, so I appreciate it too. I mean, it's I'm happy to provide information, but I'm also more than willing to learn, so I've learned a lot. Well, appreciate that too. It's

Scott Benner 1:08:56
my pleasure. It really is. We're definitely still calling this gas station orange juice, though you got totally fine, whatever you want to do, I trust you. The weirdest thing you were like, you know, you went to the gas station and got me orange juice. And I was like, oh, okay,

Carly 1:09:10
people are gonna be listening. They're like, what does this have to do with gas station? Orange juice? Nothing

Scott Benner 1:09:14
to do with that. That's a part of the joy I had. A woman told me the other day she goes, Listen. It's not that I don't enjoy your titles that don't mean anything. She's like, but she goes, but could you write more in the description? And I said, No, it just doesn't make sense to me. Like, if I explain the episode in a description, first of all, most people aren't going to look at it, and the ones who look at it might go, oh, well, I don't need any of that. And then they'll skip it, and then they'll end up missing something that's really, like, really could have been valuable for them. So it's a little on purpose. I just want you to have to listen. So part of the mystique, right? Yeah, I mean, listen, what am I gonna do? Also, it's not like anyone's famous, like, you know, other podcasts get away with just being like, you know, they just put the name. Of the person in the in the title, and you go, Oh, okay, you know Steven Spielberg is on today. I know that. And then you can go, Listen, but I can't say, you know, I'm not saying your last name, but I can't be like, Carly's on today, because people are going to be like, I don't know who that is, so, all right, nobody cares about her, yeah, but when you turn on gas station orange juice, it takes you a while to figure out what's going on. By then, hopefully you're hooked and you're listening to the episode anyway, that's how I do it. All right. Thank you so much. Hold on one second for me. Okay, okay.

The conversation you just enjoyed was sponsored by Omnipod five. You want to get an Omnipod five? You can? You want to make me happy? Do it with my link, omnipod.com/juice, box. Are you tired of getting a rash from your CGM adhesive give the ever sense 365 a try, ever since cgm.com/juice box, beautiful silicone that they use. It changes every day, keeps it fresh. Not only that, you only have to change the sensor once a year. So I mean, that's better Earlier you heard me talking about blue circle health, the free virtual type one diabetes care, education and support program for adults. And I know it sounds too good to be true, but I swear it's real. Thanks to funding from a big T 1d philanthropy group, blue circle health doesn't bill your insurance or charge you a cent. In other words, it's free. They can help you with things like carb counting, insurance navigation, diabetes technology, insulin adjustments, peer support, Prescription Assistance and much more. So if you're tired of waiting nine months to get in with your endo or your educator, you can get an appointment with their team within one to two weeks, this program is showing what T 1d, care can and should look like. Blue circle health is currently available in Florida, Maine, Vermont, Ohio, Delaware, Alabama and Missouri. If you live in one of those states, go to bluecircle health.org to sign up today. The link is in the show notes, and please help me to spread the word blue circle health had to buy an ad because people don't believe that it's free, but it is. They're trying to give you free care if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama and Missouri. It's ready to go right now. And like I said, they're adding states so quickly in 2025 that you want to follow them on social media at Blue circle health, and you can also keep checking blue circle health.org to see when your free care is available to you. I can't thank you enough for listening. Please make sure you're subscribed, you're following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. Are you starting to see patterns but you can't quite make sense of them? You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 Hey, what's up everybody? If you've noticed that the podcast sounds better, and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit it. You want rob you.

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