#1522 Tired Uterus

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Josalyn is a labor and delivery nurse and mom of six—her youngest, was diagnosed with type 1 at age 5. This episode dives into the challenges of parenting a big family while managing T1D.

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

Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox Podcast.

Jocelyn 0:14
My name is Jocelyn. I have six children, and I'm a nurse.

Scott Benner 0:19
Nothing you hear on the Juicebox Podcast, should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. 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/juicebox 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 Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com the podcast contains so many different series and collections of information that it can be difficult to find them in your traditional podcast app. Sometimes. That's why they're also collected at Juicebox podcast.com go up to the top, there's a menu right there. Click on series, defining diabetes. Bold beginnings, the Pro Tip series, small sips, Omnipod, five ask Scott and Jenny. Mental wellness, fat and protein, defining thyroid, after dark, diabetes, variables, Grand Rounds, cold, wind, pregnancy, type two, diabetes, GLP, meds, the math behind diabetes, diabetes myths and so much more, you have to go check it out. It's all there and waiting for you, and it's absolutely free. Juicebox podcast.com Today's episode is sponsored by the tandem mobi system with control iq plus technology. If you are looking for the only system with auto Bolus, multiple wear options and full control from your personal iPhone, you're looking for tandems, newest pump and algorithm. Use my link to support the podcast, tandem diabetes.com/juicebox. Check it out. The episode you're about to enjoy was brought to you by Dexcom, the Dexcom g7 the same CGM that my daughter wears. You can learn more and get started today at my link, dexcom.com/juicebox,

Jocelyn 2:22
you My name is Jocelyn. I have six children, and I'm a nurse.

Scott Benner 2:27
Holy hell. You know how you must listen to the podcast

Jocelyn 2:33
a few times a week. Yeah, okay. But

Scott Benner 2:34
I mean, you start with six children, you know where we're gonna start. Everything's okay. Your parts are okay. You feel all right.

Jocelyn 2:40
Yeah, no, I'm good. I survived. How long of

Scott Benner 2:44
a time frame did you turn those six out in 10

Jocelyn 2:48
years? No kidding. Yeah, three boys, three girls.

Scott Benner 2:52
Did they come out in order? Like, boy, boy, girl, girl. Did they come out? Boy, girl, boy, how did it happen?

Jocelyn 2:57
No, it's girl. Boy, boy, boy, girl, girl, girl, boy,

Scott Benner 3:02
okay. Now, you know, my next question, are you making an army for Jesus? Are you? What are you trying to do? What are you trying to do? Exactly,

Jocelyn 3:08
no, I get that question a lot. I always wanted a big family. I was just around big families growing up. I just love that dynamic. And my husband comes from a big family, and so when I told him, You know, I think I wanted 12 when we first got married, so he knew what he was getting into, and he was mostly okay with it. I think he wanted to stop around kid four. But, you know, here we are six kids. You were like, I want more kids. Yeah, pretty much.

Scott Benner 3:36
Yep. Where do you live that you can keep six children, plus yourself, your husband, and I'm guessing, with this drive to be kind of thing, six cats and a dog and a parakeet, like, how are you keeping how? Okay, how many pets do you have?

Jocelyn 3:49
So we just have one.

Scott Benner 3:51
Is it a dog?

Jocelyn 3:52
Yes, yeah. I mean, we, in the past, we've had, you know, chickens and pigs and stuff like that. But currently, we just have a dog who's old and she's he's great, but, yeah, no, cats. I'm not a cat person. Oh,

Scott Benner 4:03
chickens and pigs. Do the kids live in the house? Yeah, they are allowed in the house. That's awesome. Yeah. I mean, you don't have to tell me where you live. I know, as we were, by the way, as we're setting this up before we're recording, I'm like, There's no way where you live will come up. But just in case, like, what's the community? Like, I don't like, if I don't know, I'm very baffled, as you can tell, yeah, I don't know people that have more than three children. Local to me,

Jocelyn 4:28
yeah, no. We live in the Northeast, and it's definitely a very expensive area, but I, you know, work more than full time. My husband has his own business, and so we just, I don't know, we've been doing a long time. Actually, we're on the kind of the decrease right now, because two of our kids are really kind of grown and self sufficient. So we're, it feels like four kids is nothing, you know.

Scott Benner 4:50
So you're, and I don't mean to pry, but your husband's wealthy. Is that what we're talking about here? I don't even

Jocelyn 4:55
say wealthy, because you know how it is. You get to the end of the year and you're like, we made how much? And we have how much, but we always, you know, we've done well and just kind of okay, you know, been really blessed. Yeah, you think those

Scott Benner 5:06
kids are going to college, all six of them, so, no, I think

Jocelyn 5:10
some of them are not inclined, and we will help them, like, that's what we have done with our oldest two. They're out of the house, but I definitely don't think all of them will go to college, and we definitely won't, you know, pay for all of it, that they're gonna have to ante up a little bit if it's something they really want. Good luck.

Scott Benner 5:25
Yeah, I know. So your husband came from a large family. How big

Jocelyn 5:29
he's the youngest of seven? No kidding. I'm sorry. Are you Catholic? Nope, nope. Just love kids. I know. Like just, I just wanted a bunch of kids. I loved being pregnant. I love, I love, love birth. That's what I do for work. So, yeah, I just something that I found came easily to me. Do you collect other things,

Scott Benner 5:49
like, if I came, if I came in your house, would I be like, Why do you have all these figurines or anything like that? No,

Jocelyn 5:55
no, I'm a very like minimalist. I like open spaces. I'm not a collector of pets or anything, just, just children. Interesting. That's

Scott Benner 6:03
so interesting. I mean, when you said you had six kids, I was like, Oh, the Mormons are back. But it was not what happened. No, about that, look at you. Just a regular old white lady churning out a bunch of kids over there.

Jocelyn 6:14
Yeah, it happens.

Scott Benner 6:20
Awesome. And what are the ages of the kids now? And how old are you?

Jocelyn 6:22
Oh, I'm 40, and my oldest is 20, and my youngest is 10. So that's our diabetic. Wow.

Scott Benner 6:28
Oh, look at you. Really Are there other autoimmune issues?

Jocelyn 6:33
My dad had hyperthyroidism, so, you know, he had his thyroid removed and is on Synthroid. My sister also had hyperthyroidism, and she, let's see, so she's on medication because she had, I can't remember what she had done, but she was diagnosed as a teenager. But besides that,

Scott Benner 6:53
not really, no, and you don't have any ailments or anything, nope, healthy as a horse. How about that? Then childbirth doesn't give you hyperthyroidism, that's it. No, no, no. I thought for sure you were gonna have that. I was like, Oh my God, no, wow, wow. Okay, so you were 20 when you had your first about because you're 40 now and you have a 20 year old, your youngest, who has type one is how old right now? She's 10. She's 10. Okay, yeah, yeah, okay, all right. And how old was she when she was diagnosed?

Jocelyn 7:22
So she was five. So we've been doing this for this is our fifth year, one

Scott Benner 7:26
more year, and you'll have as many years with diabetes. You have kids,

Jocelyn 7:29
that's right, yes, just the same, just, but just put

Scott Benner 7:33
sixes everywhere. Yeah. What's your remembrance of the time? Do you remember how you figured it out, or what your first inclination was.

Jocelyn 7:42
So I have also been a nurse for about five years, so I had just graduated from nursing school, and, you know, kind of had learned a lot about diabetes. The funny part was, I tried to go to nursing school when, before I had my kids, like, like, what same people do go to nursing school right out of high school. I just hated the idea of hurting anybody, like poking them, like so I could not get over giving people shots or taking blood or any of that stuff. So I stopped. I had all my babies, and then I started working in a hospital as a as a tech, and I just loved it. And I thought I want to try to go back to school. So I got over my fear of needles. I, you know, took blood sugars, kind of got around that fear, went to nursing school, graduated, and then, you know, Abby was five years old, so she wasn't in school yet, but we were preparing to move down south to a different state during COVID, which is, I don't know, I got a job down south. And my husband did too. So moving across country on the drive down there, very, very long drive, she started having to pee a lot, you know, classic type one symptoms. And with all my, you know, brand new nursing knowledge, I started to think on the drive down there, I hope it's not type one, you know. And I'm like, no, no, she's gonna get a fever. She's, you know, she started throwing up, and I thought just, it's a virus. Okay, we're gonna keep going. We get down to our new house and a big, huge new city. Don't know who our doctor is going to be. New hospital. We have an awesome pool in our new house. The kids are all playing, you know, she's and she just could not get over this. What I thought was a virus. Well, what I was hoping was not type one, right? One morning must have been the beginning of July, because she was diagnosed in July. We had been there for maybe two days, and she just kept sleeping in the morning. And, you know, I'm really it's COVID. I'm trying not to take her to the hospital. I don't have any resources there. We have no friends. She hadn't had anything to eat or drink the whole day. She had like a popsicle in the morning because it was hot. And I thought, well, I've really been worrying about this for a while, and I feel like I don't want to take her to the hospital if I don't need to expose her to COVID and all these other things, but I could just go get a glucometer at the. CVS. So I went down the road, got a glucometer, you know, figured out how to poke her finger, and it was 417 so then my, you know, like, obviously, then I'm like, okay, it is what I've been afraid of. So we ended up, I took her to the Children's Hospital. And it was kind of funny, because the nurse that took us in at the, you know, the intake, and this is a children's hospital. I said, you know, I my daughter, I believe she has type one diabetes. I just checked her sugar. It was 417 she says, Well, what did she eat today? And I thought, I'm like, it doesn't matter what she ate. Nobody should have a sugar of 417 like, like, if I had said, like, she ate five ice cream cones, they would have been like, Ah, you're fine. Go

Scott Benner 10:44
home. Yeah. So, yeah.

Jocelyn 10:47
So that was kind of like, that was the beginning. She'd spent a couple days in the in the PICU, and then, you know, in the regular unit. And then, you know, we've been, you know, this is our, like, I said, our fifth year. So just been rolling since then. Geez.

Scott Benner 11:00
What makes you want to come on the podcast?

Jocelyn 11:03
Well, I thought I have kind of a unique perspective in that I am a nurse, you know, I'm like, in the hospital, Nurse got a, you know, lot of labor delivery experience, and then just, I feel like, anytime I sorry,

Scott Benner 11:15
I'm sorry. I laughed. Because you do have a lot of labor and delivery experience. I do not even being a nurse. Yeah, personal. And honestly, if you walked up on a stranger having a baby, could you keep watching YouTube with one hand and deliver the baby the other

Jocelyn 11:34
my hands at some point you put

Scott Benner 11:35
the phone on the belly while you're doing it. Then, yeah,

Jocelyn 11:40
no, but I think I have a unique perspective of being in the room with type one patients, and being a type one mom, kind of having this level of knowledge that most nurses and honestly, a lot of doctors don't have, of like how this disease is managed day to day. And you know, the kind of, I guess, distrust of like diabetes care Yeah, that diabetes experience when they go to the emergency room or, you know, into the hospital or doctor's office or anywhere where they get medical care. Do you

Scott Benner 12:09
have any feeling for why this is, you know, it's obviously not some sort of rule. I didn't do a I didn't do a survey of 10,000 nurses or anything like that, but I've been around this for a long time, seeing people's kids diagnosed. A lot of their moms or dads are nurses, and nurses either handle type one diabetes like one way or the other, but when they don't handle it well, at first it's interesting, the reaction they have to it, almost like somebody told them diabetes was one thing, and now that they see what it is, it's confusing. Does that make sense to you? The Dexcom g7 is sponsoring this episode of The Juicebox Podcast, and it features a lightning fast 30 minute warm up time that's right from the time you put on the Dexcom g7 till the time you're getting readings. 30 minutes. That's pretty great. It also has a 12 hour grace period so you can swap your sensor when it's convenient for you. All that on top of it being small, accurate, incredibly wearable and light. These things, in my opinion, make the Dexcom g7 a no brainer. The Dexcom g7 comes with way more than just this, up to 10 people can follow you. You can use it with type one, type two, or gestational diabetes. It's covered by all sorts of insurances and, uh, this might be the best part. It might be the best part alerts and alarms that are customizable, so that you can be alerted at the levels that make sense to you. Dexcom.com/juicebox, links in the show notes. Links at Juicebox podcast.com, to Dexcom and all the sponsors. When you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful. 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 missed 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/juicebox 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/juicebox 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 bulk. Us,

Jocelyn 15:00
yeah. I think if you've done a lot of type two care, which is, you know, the bulk of it that you see in inpatient, it's hard to, like, comprehend the complete lack of insulin and, like, just the like, I think as soon as you get an idea of what this means as a nurse, you have like, a deeper understanding of like, oh, this is a lot.

Scott Benner 15:22
Yeah, I have to say, Jocelyn, you have awesome energy. Oh, really, do you not think that about yourself? I mean,

Jocelyn 15:29
I think I'm calm. I've been in a lot of really difficult situations, like personally and at work, and I just feel like I try to bring the calm. I try,

Scott Benner 15:38
did something happen to you as a child? Like, I want to know, like, I'm being if you had your first baby at 20, were you married and had a baby at 20?

Jocelyn 15:46
Okay, I've been married 22 years. Okay, so

Scott Benner 15:49
you, like, thoughtfully, got married when you were, like, 19 or 20 years old, right? I don't know

Jocelyn 15:54
if thoughtfully is the word, because, like, we were literally still babies. Like, I look at my 19 and 20 year old children, and I think either we were a lot more adulty than adults are nowadays, or we just really had to grow up quickly, because it was like, just, you know, hit the ground running and had a bunch of kids, and then had to figure out how to, like,

Scott Benner 16:14
take care of them. Yeah, but how do you get that's what I'm trying to figure out. Like, because, listen, I got married young, and you've got, like, five years on me. So like, Were you guys this, this is too personal. You'll stop me. But were you running from something like, did you and your husband, like, have like, bad upbringings? You're like, Let's go off and do this ourselves. Or were you just, like, met each other and we're like, wow, this is awesome, and got swept up in it and fell in love. And that's the thing. Like, how did it work? We were

Jocelyn 16:37
running from something like, we both came from like, I mean, I, I wouldn't say I had the warmest upbringing, like, I It's probably one of time to go into all my, like, weird issues with my mom, but I think, and she's not gonna listen because I haven't talked. But I think I wanted, I wanted warmth in my life. I wanted, like, close family connections. And so when I met my husband, it was just like, like, I felt that warmth and then wanted to just, I always wanted kids, and so I feel so blessed, yeah, to be able to have exactly what I wanted, like I literally, I have the job that I wanted, I have the family that I wanted, and so all the rest is just gravy, you know? I mean,

Scott Benner 17:14
even just going back to school to be a nurse, like, later, that's what I mean about that energy. Like you didn't just go, like, look what I did. I pushed these six kids out. I raised them. They're cool kids. Like, I'm gonna chill for a half a second. You're like, I'm gonna be a nurse. Now, you know what I mean? Like, that's like, a lot of like, you have a lot of good energy. Also, I unfairly know who you are, like, through the like, I can picture you like, I don't know. I somehow know that your husband's like, a just like a big, giant human teddy bear. Like, looks like an awesome guy. No, yes, because somehow I like, I don't normally do this, but your last name so weird, like that. I was like, Who am I talking to? So I went to the Facebook group to look, and then I couldn't find you. And I was like, but her husband appears to be here. And then the funniest thing about your husband's Facebook page is he's not even friends with you. It's awesome. It's like, it's the most guy thing I've ever seen in my life. So funny. He's got no Facebook friends. And I was like, really funny. I'm like, I'll just find her through him. And I'm like, Nope, he's not friended one person on this thing.

Jocelyn 18:17
I am his friend. I have a lot of friends, but I am his friend.

Scott Benner 18:23
He's busy working, paying for 90 people, I know. Yeah, so that's how I like I tripped through his account to yours, which is why I know what he looks like, yeah, yeah. I can envision like, two young, fresh faced people being like, hey, and he looks safe like, he looks like he could take care of it. You know what? I mean? Yeah? Oh, he does, yeah. He always takes care of it. Yeah, no. Like, if this was the Walking Dead, I'd be like, I'm gonna get on his side. Seriously,

Jocelyn 18:45
yeah, yeah, that's my vibe. He could carry us all to safety,

Scott Benner 18:49
exactly the vibe I got from him. So, yeah. So anyway, okay, so you're just looking, you were looking to build warmth and happiness around yourself, and you did it, and then you didn't stop. And then your kid gets diabetes. And then did you just take that same energy and drive and just put it into diabetes? Like, what did you like? How did you handle it? Because you have a nursing background, but not so much with type one. You're doing more labor and delivery stuff. So how does it all meld together? At the

Jocelyn 19:14
time she was diagnosed, I was in med surge nursing because it was COVID, and I just couldn't get in as a new nurse into labor and delivery. So I'm so thankful for it now, because I really, kind of got a really bigger understanding of, like, the whole of, like, hospital, you know, med, surg, nursing and and then I got to do what I love, but so no, I just kind of, when she got diagnosed, I had been suspecting it for a while. I did kind of hit the ground running when we were diagnosed, and I kind of had to, because I didn't have resources. I didn't have, you know, as COVID so even in person, meetings were really not a thing. So I was so thankful to have, like, at least a half understanding of what the disease was and what I would need to, like, what our new life. Was going to look like, but I still looking back on it now, like had so much to learn. And every year, you know, is more I gain more understanding that helps me help her more.

Scott Benner 20:10
Yeah, that's awesome. How did she handle it being diagnosed? She

Jocelyn 20:16
doesn't remember now, you know, like, I think, like, usually five are your earliest memories, so she doesn't remember what life was like before diabetes. She's very independent, like for being our baby. She is like, she does her own she uses an Omnipod, she uses her she does her own. Site changes a lot of times. By the time I'm like, have you done a site change, or it looks like you're low on insulin? She's like, I just did a site change, and she's, you know, she's really getting to be independent with that stuff. She handles it really well. I think initially it was hard, you know, the finger pokes, I think were the hardest part. And then the IVs. She is frequently incentivized. If she doesn't want to do something, or if her blood sugar's high, we have to bring it down. You're like, well, you don't want to go to the hospital, have to get an IV. She remembers that part of the hospital stay, Yeah,

Scott Benner 21:02
but you're saying day to day, she she manages herself pretty much. Are you involved with her insulin decisions or carb counting, or anything like that?

Jocelyn 21:09
I would say 5050, right now, as in, she is very independent with most things, but sometimes she likes to just check out of diabetes. And also, we have had a lot more issues over the last year or two with, I don't want to call it sneaking food, but like, she's not bolusing, yeah, and just kind of like food issues in general, just like, you know, finding lots of wrappers and stuff like that that you know that were, I think she's getting better at bolusing for it so that that part is eliminated. But I do sometimes get concerned with like, are we heading towards a food issue, you know? Like, yeah, not an eating disorder, but just kind of like disordered eating from feeling shame with eating when your sugar's high. So, yeah, that's kind of where we are with things. I mean,

Scott Benner 21:59
she's 10, right? So yeah, how do you talk about that with her? Or have you tried yet?

Jocelyn 22:04
Yeah, actually, I've met with, I can't remember her role is, but someone that was really helpful with talking about, you know, shame related to food. And I guess the frustrating part is that the best way to deal with shame is to kind of not talk about it, because it makes it so much worse. As in, like, did you eat that food? Like, I just found a chip bag, you know, like, Did you Bolus for that? But just kind of, like, treat it like anyone else, like, I guess, not like anyone else. Like my other kids walk by with the, you know, big bag of Doritos, and I'm like, don't eat all of them. We all want some or something like that. But with Abby, it's a little different, trying to, like, make sure that she's taking care of herself, because she wants to be independent, and that we're not going to see a blood sugar of 300 because, you know, she just sat there and ate and didn't Bolus for it. So I guess all that to say we try to, like, destigmatize it a little bit and just go like, Oh, hey. Do you think you know you might need to Bolus a little bit more for that, I don't even go into the, you know, the guilt anymore, and it's been helping.

Scott Benner 23:06
Yeah, it's interesting. I think about this a lot, actually, while I'm making the podcast. So, you know, I've tried to not in the beginning, the beginning of this whole thing. I just had my perspective, and I'm adding everyone else's as I go, but the number of people who would tell me how important that is, that food shaming or eating disorders are prevalent with people with type one, and you have to be careful, and it's just shaped a lot of the way that I've talked about all of this over the years, because you don't know who it's going to be or when it's going to happen. Yeah, yeah,

Jocelyn 23:41
we all choose to eat differently. Like, our families are really different. Like, I would probably cook a lot differently if I wasn't cooking for an army, you know. But, like, I just can't really picture myself, you know, making a big hunk of meat and, like, you know, two vegetables for my teenage boys that are eating us out of house at home, you know. So it's kind of this balance of, like, you know, taking care of her, teaching her to have a good relationship with food, but also, like, feeding the masses here. So yeah,

Scott Benner 24:10
oh yeah, you, I mean, you really are. I've seen people before say, Look, we all just changed, like we ate a little differently, and it was actually, I've heard people say it was good for our family, like we ate healthier or whatever. But I don't know how you pivot eight people and their eating habits and their eating styles on a dime without making them look at your daughter like she's the reason I don't blah, blah, blah. You know what I mean, exactly,

Jocelyn 24:34
exactly, and then, yeah, so I think it's just been more about like, making changes. You know, I'm like, a growth mindset kind of person, like I, you know, I don't rest very much. I just always want to be changing. Like I walk away from each shift. What could I do differently? What could I have done a little better to make that birth, or that, you know, that experience, a little better? So I, I really feel like I kind of bring the same thing to Diabetes Care and just kind of like, re evaluate every once in a while, or. I get a little frustrated, like, okay, what can I do differently? What's the problem here? And we've definitely made some good changes. Like, one of my older kids gripes about, you know, our food is that I cut out cereal a number of years ago because it's basically like eating ice cream for breakfast, and I that's judgy, but I can't get it right. No matter what I do,

Scott Benner 25:21
I just gave it up. It's hard to Bolus for, isn't it, it is, and I

Jocelyn 25:25
maybe people are better at it than me, but I have tried a lot of different kinds. And then we tried the low carb cereals, and no one likes them, and they're expensive, so it was like one of those things that was just easier for me to not do. And I guess one thing about diabetes is it gives you a picture of, like, how our bodies handle food that other people wouldn't have. And so you kind of go, Hmm, maybe that's not good to eat for breakfast.

Scott Benner 25:51
So, yeah, I want to be clear, if you have diabetes or not, there's nothing valuable about like, a box of cereal. I'm not saying that I haven't been like, oh, frosted flakes in my life. You know what? I mean, there's something like that, like, that. Like, I probably just picked the most boring cereal to for everybody, but, yeah, at the same time, like, it's hard to Bolus for. I mean, it's a huge kick of sugar, right? Often, you know, accompanied by milk, which has fat in it, and, you know, will help keep your blood sugar up later. A lot of people struggle in the morning with foot on the floor, or, you know, having lower basal overnight to try to, like, stop lows or whatever. Then they're a little void of insulin in the morning, and then they jump this on top. It's, it's really difficult, but in the end, not eating cereal is good for everybody. It's not just a diabetes thing,

Jocelyn 26:35
right? But I think it's just funny that that's one of my kids, like, frequent like, oh, remember when we used to eat cereal? It's just, it's a treat, I guess, you know, like, if we're in a hotel or something, or, you know, like it's not an everyday thing. It's just something that sometimes they get as a treat. I

Scott Benner 26:52
wonder if it's ease of use.

Jocelyn 26:54
I think that's it. Yeah, have

Scott Benner 26:56
you ever portable cereal and while you're eating it? Thought, I don't want this, but Well, and, you know, I didn't have to crack an egg, and I'm not cleaning a pan, and this is kind of like, yeah. I mean, yeah, no.

Jocelyn 27:07
I mean, I used to, and this is, this is terrible, but, like, I'm a night shift nurse, and when I got home from work for a number of years, like, go to meal before I lay down, was a beer and about three bowls of cereal, and I would just keep pouring cereal until the milk ran out. And just like, that was like, and I think about it now, I'm like, Man, how many carbs was in that before I went to sleep. And, like, it

Scott Benner 27:30
just sat you overnight. Yeah, right. Explain that though, like, 12 hour shift. Are you super hungry? Is your brain tired? Is it like a whole, like, mix of things? Yeah, I

Jocelyn 27:39
mean, and and it's a whole mix of things. I think it's just a relaxation thing. It's just like knowing that you're going to bed, like you're already kind of asking your body to sleep during the day, when most people are awake and the lights are on and, you know, so it's like just kind of that comfort, you know, probably a sugar like, just, you know, like that after Thanksgiving, feeling,

Scott Benner 27:59
I'll put myself into a food coma, and then I'll sleep pretty much. Hey, it worked, so I don't do it anymore. Did you ever pour the beer into the cereal? Just skip the step?

Jocelyn 28:08
No. But, I mean, you do definitely feel like an alcoholic when you know like someone knocks on the door and you're like, all you know, bleary eyed with a beer in your hand at 830 in the morning. So

Scott Benner 28:18
good morning. America's on. You're like, Hey, what's up? Just put that package over there. Thank you. Yeah, you want one mom has had a tough night. Go back a little bit to something you said a few minutes ago about your propensity to think over things and try to make them better. Where does that come from? Do you think? I

Jocelyn 28:40
honestly think that comes from my dad. I think he growing up like, one of his biggest words was initiative. And, you know, just like I have always loved setting a goal, maybe I don't need it, but I end up like, better than where I started. I think that's what helped me get through nursing school. Was like, I can do anything for a short time, you know, like labor, you know, like I can do anything for, you know, this long, yeah. So I kind of try to take that approach with diabetes, because I feel like sometimes it can be really, like daunting, you know, like, I remember that being one of the emotions that really struck me when I first, when Abby was first diagnosed, was thinking, this is forever. This is not, you know, like, this isn't an illness where she's going to get better or she'll just have to take a pill a day. This constant level of thinking is forever, you know.

Scott Benner 29:35
So not just like we just have to get through this, or it's just three years, or it's just six months, but it's right, yeah, it's forever and ever. No, I know, yeah, it sucks, doesn't it? No, it

Jocelyn 29:45
does. And then, you know, every year, like, we're definitely, like, in the throes of pre puberty, like with the huge insulin needs and the huge growth that she's done over the last couple of years, that's like, every couple of months, there's some new variable to. Get over. We'll figure out how to meet. Oh,

Scott Benner 30:02
yeah, that's not gonna stop for a while. I mean, I'll let you know when it stops. Like somebody said to me the other day, like, when does it get easier being a parent? I was like, I don't know. I'll let you know when it happens. Yeah, really, I have no idea diabetes is gonna be, from your perspective, I don't think it's ever that's not gonna stop, right? And for her, who knows, right? Like, her stuff's gonna change and change and change. She's gonna either go away to school or get a job, and then it's gonna change again. And I don't know that people don't settle into their life with diabetes when they're diagnosed younger, any differently than they settle into their real life. Like, 2627 28 like, in that age when people start to, like, you know what I mean, like, political Not you. You were obviously an adult when you were 15. You know, for most people like you don't really settle into yourself until you're mid to late 20s. I think,

Jocelyn 30:49
no, I agree. And I think, you know, even though we were, like, married and had kids like, I still feel like we were growing up for a long time after we were married. Oh, sure.

Scott Benner 30:58
Do you guys make up a lot of your differences, or are you very similar, your husband and yourself? No,

Jocelyn 31:04
we're very different. But you know how it is when you've been with someone for a really long time, like you kind of meet in the middle, like, whether that's spending habits or just the way that you like approach different situations, we are very much opposite. Opposites attract. And then, you know, there's that whole oldest, youngest thing. He's the youngest. I'm the oldest, you know, that kind

Scott Benner 31:22
of thing, yeah, yeah. I'm dying to know, because of the example you reach for, what did he buy that? You were like, Oh, God, what happened?

Jocelyn 31:28
Oh, well, yeah, he's, he always been big into buying cars. And, you know, we'd have a lot of discussions when we were first married about, like, oh, you know, like, we don't have a lot of money. He's gonna buy this car, but it's gonna be great, and then he can re sell it, you know, like, so done that a lot, and it got to the point where, I don't know, maybe seven or eight years ago, he just came home with a new truck, and he's like, I just skipped the fighting and bought the truck. And I was like, all right. And I was like, okay, that's where we are, all right.

Scott Benner 31:59
So you know how to be happy

Jocelyn 32:02
skip the middle.

Scott Benner 32:05
I've said that to my wife before, not about a vehicle, but I've been like, can we just skip this part and go back to the part where it's not going to be like this anymore, because it's going to happen. You know what? I mean? Yeah.

Jocelyn 32:16
Well, sometimes the fights are so predictable. You're like, Okay, I know I feel like this, and you feel like this. And so he's just, like, I just skipped it. I just bought the truck. Yep, yeah, my

Scott Benner 32:27
wife's the opposite with cars. She'll be very supportive of getting a car, and then later, like, hold it over my head. Later, like, it a little bit because, like, I own a car. Like, I don't have more than one car, but, yeah, I do switch cars probably more frequently than some people do not, like, you know, yearly, or anything like that. But I probably don't have a car more than, like, five years. And then I'll be like, Hey, I was really thinking about this. And I'm like, you know, I have some equity in my car. And I'm like, if I can, I can sell it and make some money. And, like, it'll offset the next thing. And, you know, blah, blah, blah. And she's always like, Oh yeah, you know, you work really hard. You should be like, she says all the things. Like, it's like a hallmark show, but kindness she gives me when I say this. And then, like, six months later, I don't know what happened, it'll be like, the most banal thing, like, you don't even I'll be like, Hey, how come we have all these, like, I don't know, loaves of bread. Do we really need all these? And she'll be like, did you really did you really need that car? And I'm like, Whoa, how long you've been

Jocelyn 33:28
sitting on that? No, it's, yeah, it's true. I'm not like, I guess I appreciate that. He just like, anticipated what would happen. And like, you know, I was so busy at the time. It was like, All right, well, whatever you you do, you, you pay for it. You know, like, Jocelyn,

Scott Benner 33:42
I have a, I mean, you've been married, I think the length of time, 20 years, right? More than 20 years. I think you come to the conclusion, like, if neither of us is have left yet, we're not going to, unless one of us, like, literally does something like, reprehensible, or I come home one day and I'm like, is that you on the news? Like, you know what I mean? Like, unless it's something like that, you're like, This is fine. I'm good with this. Yeah, yeah.

Jocelyn 34:05
No, I would, I would have found out about it by now. Like, if we don't like each other by now, you know, I think it is, you know, but we are at the point in our lives where, you know, most of our friends got married young, and then, you know, some of them we've lost track with. When you haven't heard from a couple for a while, it's 5050, on whether or not they're divorced at this point. You know, like, yeah, that's where, like, I think, I think you appreciate it's just kind of thankful for still liking each other.

Scott Benner 34:35
Listen, as we were younger and growing up, and people would get divorced, I'd be like, yeah, yeah. Kelly, be like, are you? Are you happy? They got worse? I'm like, No, not at all. I was like, but yeah, statistically speaking, we're not all going to get divorced, so the more of them that it happens, it's

Jocelyn 34:49
like, the more probability down for you. Our numbers get better. We made it. We're still here. Yeah,

Scott Benner 34:59
I think my. Wife's too stubborn, or she would have left. She she would have been like, 1015 years ago. She would have been like, you know what? That's enough of this. But instead, she's like, I'm not losing this. I think she's in a fight with me right now to see who can live longer. That's what I

Jocelyn 35:12
think is happening at the moment. Yeah, statistically, women do live longer than Oh no,

Scott Benner 35:16
I know. Yeah. If I'm 87 and she's 82 and I dropped dead, and she only lives another year. It'll be the happiest year of her life. She'll be like, I outlasted that son of a bitch.

Jocelyn 35:26
She's like, right? She's like, he did well. He had a good run, by the way. Anyway, the way

Scott Benner 35:30
you use the purchase example, I use the bread example. My bread example is absolutely real. My wife, for some reason, needs so many bread options, but then really doesn't use them. Like, I don't understand. She likes to have like, three different bread options in the house, and then a week and a half later, I'm like, all the time. I'm like, Yeah, I'm like, this breads all moldy. And she's like, Yeah, I know. Like, it's like, her one, like, weird thing. So funny. Some people have a bread drawer. We have a bread room. So what's the most challenging thing, raising six kids? Everything

Jocelyn 36:04
was pretty much just diapers and, like, homeschooling, and, you know, like I was just home with them for 10 years, and that was kind of like, I really, like, cherish that 10 years, because I've been working since then. And I love my job, I love what I do, but, you know, I think so there was that decade of like that was challenging. Just everybody was healthy, but there was just so many diapers, so many, you know, babies, and like, just the time constraints and the sleep deprivation. And then this past 10 years has been a decade of like, health struggles and mental health struggles for teenagers, and then, you know, for Abby's diagnosis, and then right after Abby's diagnosis, our oldest son had open heart surgery at the age of 15, so that was really something unexpected and just kind of meeting that need. So I think sometimes I feel like being an ambitious an ambitious person. I feel limited by like, oh, I would, you know, I would work that extra shift. I would get that, you know, like, different job that I would really love to do. And I don't want to say that I'm, like, I guess, limited by my family, but just trying to fit in all these good things and and not let you know, obviously, my first role is as a mom, and that's, like, the most important thing, but just trying to, like, feel personally fulfilled and also take care of all these kids with all their different things that they need. Do you think

Scott Benner 37:29
if there were fewer kids, would it have felt the same? Or is it not about the amount of them? It's about the responsibility? I

Jocelyn 37:37
think it's the length of time that we've been parenting that's feeling like, I mean, I think it gives us understanding, you know, like we're much different parents to our youngest kids than we were to our oldest kids, because we've learned so much and been broken by different experiences and kind of had to overcome and then would never parent the same way Again going forward. I mean, the number is definitely challenging, but as they get older and they move on, it's more like the sounds cheesy, but like being a mom is like watching your heart just walk around on the earth like and you're just kind of watching it get broken, and, you know, wanting to protect it. And they need to learn these lessons. And I almost think, and I tell my patients this, like, the babies are are really the easy part, and the teenagers are the challenge. So

Scott Benner 38:28
I can't tell you, like, I just interviewed a woman the other day who had a 16 month old, and I felt bad, but I said to her, I'm like, You know what I've learned about being a parent, you actually can never do the right thing, because no matter what you do, someone else sees it differently totally. And so you can, you know, make the best decision that you can dream up and do these things in the way that you think are, you know, the most supportive and wonderful and everything. And I think people would generally agree that, like, I'm a thoughtful parent, and yet, like, it doesn't really matter, because when you're done, it turns out one person in the group is like, I did that's not how it made me feel. And you're like, what or like, I noticed too. Sometimes, like, when you have to make difficult decisions as a parent, when you look at it retrospectively years later, sometimes the reasons you had to make the decision are forgotten, and then it's just like, Well, you did this. I'm like, No, I didn't do that. Like, I had to do that because this happened, and, like, I don't remember that part. And you're like, Oh, come on,

Jocelyn 39:27
right, well, and then we lose perspective, you know, like, well, two things are our kids, you know, are all we're raised in the same house, all, some of them are, like, a year apart, and they all remember things differently, or they don't remember things that the other one does, or they just have a completely different reaction to the same kind of parenting. Can't parent them all the same. Like, they're all such different temperaments, like six combination of the same people, they're all so different. And I love that about them, but it's definitely like, I think maybe that's what makes having six versus two or three different as I've got to figure. Out how all of them are going to handle the challenges that they're presented with. You know, also, just that a lot of parenting is just reactions, right? You know, like, you're like, okay, they did this, and now what are you going to do with this? Now, you know, like, I think, you know, think about that with, like, just having a new baby in the hospital, you know, like, okay, the baby's crying. You got to figure out what's wrong with it. You gotta, like, okay, are they hungry? Do they need to be swaddled? Are they, you know, like meeting these needs? That's your first experience with your first kid. Of like, okay, they're doing this now. What do I do? Yeah, you know. And as they get to be teenagers, it gets so much more complicated, because the needs aren't simple, and they're not physical. They're like, your presence, and then also, like, you're, well, you're gonna have to have to deal with that consequence, and so I have found that very challenging to grow into as a mom, for sure.

Scott Benner 40:47
The reason I asked is because I want to know about the impact of diabetes on the other five kids. Because I would have told you, the entire time Arden was growing up, the entire time my kids were growing up, the coal really doesn't seem that impacted by Arden's diabetes, and we spend a ton of time together, like, and Cole and I really did, like, spend a ton of time together, right? But now in present day, when we sit and talk about it, he felt like she was more important. And he's even thoughtful enough to separate the diabetes from it. Like, if he talks about it now, he'll, he'll he'll say, right to art and like, I don't mean you. I mean like, we stopped a lot for diabetes, or we did things for diabetes or whatever. And Arden will be like, Well, that wasn't my decision. And he said it's no, like, I'm not, like, I'm not blaming you for it. That's how it felt to me when I was a kid. And I would say, but Cole, like you and I would be at baseball practice, like, multiple nights a week and on the weekends, and we'd go on trips. I'm like, you and I have spent more time together than most fathers and sons spend together. But that's not the part you remember. Like, he doesn't not remember that. I want to be clear, but like, yeah, what? When you ask him about diabetes, he doesn't say, oh, you know what? It was a lot, but it was offset lovely by the time we spent together. Like, it doesn't, it doesn't feel like that. You know what I mean. So while you're as a parent, right? No, no, it's okay, because we're doing all these offsetting things, it doesn't actually get offset. Yeah, you know what I mean. So I think no matter what you do and how well intended and even how well you execute your plan, it's not gonna cover for that feeling of one of them got more attention from my parents than the other well,

Jocelyn 42:23
and then, you know, I mean, with Arden two buck, compounded by the fact that she's the baby, you know, and I definitely have that, like, oh my little, you know, like, I, I'm not gonna have any more babies. This is my, you know, like, kind of, and just coming at it with a different, like, more relaxed level than, like, you know, the things that would have really freaked me out, or I would have, like, done a lot of, like, you know, timeouts for with my first I'm like, Yeah, whatever. She'll figure it out, you know, because she's my youngest, and I realized that it's just, like, with the car purchase with my husband, like, it's not worth the struggle in the middle, I got to pick my battles, you know. Yeah,

Scott Benner 42:55
it takes you a while to figure out the juice isn't worth the squeeze. Yeah,

Jocelyn 42:59
exactly. And so, you know, Abby has the benefit of, like, being the at the bottom of that. But I think, you know, in general, like my oldest actually was huge with helping when Abby was first diagnosed. I mean, I, you know, having just moved and just to get health insurance, had to go to work the first week that Abby was home from the hospital and diagnosed. And so we would FaceTime insulin doses when the meal would come up, and I was in orientation, and we just, you know, and she's, she was 15 at the time, and, you know, like, we had, our family had no medical experience at all. So this was like, I mean, she just took it on. And she's, you know, I was so thankful for her. I think it put a lot on her, which I kind of now look back and think, I, you know, but you that's the thing. What could you have done differently, though? No, and that's the thing. Like my husband, I talk about this a lot, like, you lose perspective in the rear view mirror of the difficulties of what it was like at that time, like, you know. So we made the best with what we had. We didn't have anybody else that was gonna, like, come over the house and give her, you know, insulin. And she was, you know, she didn't have a Dexcom at that point, so we were, you know, finger pokes and guesstimating and figuring things out and and the other kids have done amazing too. I mean, I will say, like, as far as you know, if we're gonna leave her at the house with our bigger kids, they're not gonna watch her sugars. So we're really still always on duty, but we can call them and say, Can you give her a juice? Can you tell her to Bolus for two more units because she's trending high or, you know, so they're, they're good for that, but they're on call. They're not, like, actively managing,

Scott Benner 44:32
you know, it's funny, the way you put that, regarding hindsight, it almost made me feel the way I feel listening to the to social media around the fires right now in California, right where, like, there's people are like, You know what they should have done? And you know, why did they do? I'm like, you first of all, you don't know what you're talking about, right, right? But I'm certain you don't know what you're talking about, yeah. But you know, at the same time, like, it's easy to step out of a situation, see it more big picture, you're not actually feeling it. You're not having. To live through it. It's not on your ass if it goes wrong. And to say, Oh, this should have went there, and that should have went there, and you should have done this like this, and don't say that. Say this. It's super easy in hindsight, really, in the middle of it, you're doing your best, but making it up as you go along. We just shared, I mean, I'm old. I'm like, I'm gonna be 54 this summer. Oh, that's not all. Oh, well, you get to 54 and you tell me and my wife's birthday is tomorrow. Like, you know what I mean? Like, my son's gonna be 25 soon. Arden is gonna be 21 soon. And we still found ourselves telling them the other day, like, listen, we don't know what we're doing. I need you to understand. Like, I am just a well intended, reasonably intelligent person who loves you, who is getting thrown into situations every 15 minutes. And I am saying the best thing that comes to my mind. You know what I mean? Like, there's no book somewhere, and I didn't read out of it correctly. In case you're wondering, no

Jocelyn 45:56
but where your like gut reaction came from, was your experience? Was that your life taught you. So that's what I'm saying. Like with diabetes and with parenting, is like, you know, we do what we know. Like, you know, you work with, you try to do your best with what you know, and then when you know better, you do better. And that's the whole thing. Is like, Okay, the last time she ate that, you know, that sandwich, this happened, and now I'm gonna, you know, I'm gonna Bolus more for it like that came from my experience. So you grow every year with diabetes and every year as a parent, and you don't get it right. And I'm sure I'm doing things wrong with Abby that I will later look back on and be like, Man, I really was kind of lazy with that, and now she's doing this, and I should have been more like I was for my first kid. And it's all perspective. Of

Scott Benner 46:37
course, it's super interesting. Everybody who gets thrown into a situation they don't understand, which is everybody would tell you later, hey, look, I did my best, you know, and I'm gonna try to, you know, I'll refocus, I'll take what I learned and I moved on. But when you judge another person, you're always like, Hey, why didn't you do it like this? You're like, Oh my God. And especially with kids, because they really do have an expectation that you know what you're doing,

Jocelyn 47:00
yeah, and you have to, I mean, that's, it's the same thing with, like, you know, being a nurse or bringing in doctors, like, you know, I think we know a lot no longer been practicing, you know, hopefully you're learning from all your different patients, and you have this, like, safe level of knowledge. But like, I don't know what's gonna happen, yeah, I don't know if, like, your baby could be born in five minutes and come out, you know, the old fashioned way, or it could, you know, come out like tomorrow or the next day, because that's how it works. You know, it's I have some expectations from my experience, but I don't know when that's gonna happen.

Scott Benner 47:29
It sounds very true, which is three, really, is, see, do you think your other kids are harboring those feelings or will talk about them later in life like they have to, right? I mean, I don't think you can mitigate them, but that's troubling just to me, because people ask me all the time, like, how can I do this thing with diabetes and not make it fall on my other kids? And I have to tell you, from my perspective, everything that happens to you changes you. Yeah, and it changes your course. You don't have to like it. You didn't have to want it, but it's here now, right? Justin, if you bought a round instead of a rectangular dining room table, like, some weird way, your life would be different. Like, do you know what I mean? Yeah, like, you know, somebody would, you know, walk into the corner of the table and hit their hip and it would be bruised for three days. Like, that would or wouldn't happen. Like, every little thing you do changes your course, and diabetes changes your course, and it does it for everybody. There's just nothing you can do about it. It changed my dog's life. Like, no kidding, like we used to be. We were back then, more attentive dog owners than we were when Arden got diagnosed. Like, that dog was probably like, hey, where the hell did those people go? Right?

Jocelyn 48:36
Yeah. Am I ever gonna get walked? Yeah, no kidding. You know what? I mean? Yeah, yeah. No. It definitely changes. I think, I think my girls, would I expect that they would have more of an effect from it, just because of, like, birth order, like my oldest kind of taking on that role, right? That she really did really well with, but just kind of having that extra burden of, like, I'm not just a teenager, but I'm also, like, caring about my little sister and managing those decisions that most kids don't have to think about, especially for another person. And then also, my fifth is a is a girl, and she is 13, and so like, the closest in age to Abby and feels, I think, more than the boys, who are kind of like independent sports and doing their own thing, more of the like, Hey, we're going to, you know, the store. Can we stop at Starbucks? And I don't say it, but I'm thinking, you know, where's our sugar at? Is this a good idea? Can Do I have time to Bolus for it, and then I'm, you know, rushing home after and more things than that, like, she, she's obviously, the lack of cereal is a huge issue.

Scott Benner 49:37
That's the whole problem in your house. It's a whole thing.

Jocelyn 49:40
It's really desperate here. Yeah. So I think she will probably say that that affected her more than anyone. Just being the closest in birth order and in the house the longest with her, do they treat her any differently? I think so. I think they're, they're all like, pretty good older siblings, like the right amount of like sibling. Bullying and messing around, and also like, hey, yeah, you know, why are you so grumpy, that kind of thing. I don't think they treat her any differently. I think there's just an extra consideration for, like, with anybody that's diabetic, like, you know what's going on with that? But no, they're, they're great siblings to her. She's very lucky on

Scott Benner 50:16
the parenting front. Do you share my like, one of my like, last parenting concerns is that I want my kids to be friendly as adults. Yeah, I don't know if I need them. Like, I mean, it would be lovely. I don't know if I need them at each other's house on Christmas morning or not. Like, you know what I mean? Like, I'm not sure. Like, but I don't I want them to be, like, friendly and talking and connected and stuff like that. Yeah,

Jocelyn 50:39
totally. Because I, I feel like on a different level, both me, my husband, siblings are not always like that. You know, for myself, my siblings and I are separated by distance. We all live across the country. We very much enjoy being together, but, you know, we just are separated by, you know, lives and we just can't get together that often. Then my husband siblings are very much separated by like difficulties in the past, and like things that happened and things people said, and now they don't talk to each other, and I think that would break my heart. Yeah, I can't make that not happen. I mean, I tried to, like, foster some togetherness and like being close and friendly, but I think that's kind of like, once they're adults, it's outside of your control, really. I know.

Scott Benner 51:20
See, your kids are still some of them are still young. Still young, but of all the things that I miss, like, a parenting tool, that I miss is when they were younger, and you could just, like, sort of, if you needed to dominate the conversation, just go, look, listen, I know you don't know why, but it doesn't matter. We're doing this. This is why. Like, it'll help. Like, and then they do it, and things get better. And you're like, I wish I got, like, one of those a year now that they're older, like, where I could just go, no one's allowed to have their own thoughts. Just

Jocelyn 51:47
listen to me for a minute, pretend like you're listening. Yeah, I think. And that's the part about like, the babies versus teenagers and young adults and having adult kids, is that, like, that challenge of like, I can't just put you in in the crib, and make you sit still for a minute, or put you in timeout. You know, I have to, like, kind of like, tell you what I think you should do, yeah, and then these are the consequences. And then this is the big experiment. What are you going to do, and what's going to happen to you after? And it's, oh, it's a daunting task, watching it.

Scott Benner 52:15
The one thing that stuns me, I mean, I understand it, but it still throws me off is that when your parent has some level of proficiency with something and you still ignore them on that thing, like, it would be like, if you had, like, an opinion about a medical thing, and your kids are like, she doesn't know what she's talking about, you'd be like, I'm a nurse. My wife is really matter what she does, but my wife is extraordinary at what she does, right? And when something comes up in the house that literally leans into her professional strength, people are like, I don't know if she knows. And I'm like, she runs a fairly large organization. I was like, I'm like, I think she really does know, yeah. Or even sometimes I say something like, you're an idiot. I'm like, you know, a lot of people on the internet don't think that yeah, because that's not like, you know, helpful to anybody. Nobody gives a shit. You know, right, right? Yeah,

Jocelyn 53:03
yeah. It's cool to see people in their element. Like, when you're just with home, at home with them all the time, and you kind of like, see them doing something, you're like, wow, they really are good at that. Anyone

Scott Benner 53:13
who's ever said to me, I bet Arden feels so lucky that you're her dad around diabetes, I think, Oh, you don't have kids. Like, there's no there's no way anyone who's ever said that to me has children and knows that feeling. I think it's usually the people who say that are usually adults whose parents weren't very involved, yeah, because their perspective is different. They're like, God, I would have done anything to have used my parent like around my diabetes. And I, if I was being honest, if I had time, I'd respond back and go, You say that now, but you always want the thing you don't have. So, right? Yeah, that's not how it works. You don't go, Oh, I'm so lucky I had this thing. You go, oh, you know what I didn't have? And, you know, right? You

Jocelyn 53:55
always want something different. And that's where, like, we parent differently because of our experiences, you know, like, Okay, I didn't grow up with, like, a warm household, so I really want, like, you know, hella kids up in here and just kind of, really have a warm, crazy, chaotic household,

Scott Benner 54:10
yeah, well, you got it good for you, yeah, any of those kids grown to the size of your husband? No,

Jocelyn 54:15
no, I thought the boys would be bigger. They, I mean, they're all, you know, about six feet. They're all, all the boys are three, about three years apart, like, total, like, they're all there came really quickly. They're all about six feet, but not like the massive like, I can carry you to safety.

Scott Benner 54:32
Yes, for people listening who don't know what your husband looks like, imagine she just described her sons as not big. They're only six feet tall.

Jocelyn 54:40
Well, coming from where I'm coming from, and I am very quickly becoming the shortest person in this house, like all my girls are probably going to be about five seven. I mean, Abby is at 10 years old. Is five, five. Wow. So she is my girls have, and so that's another thing, like with managing diabetes, is, I know. Experience with my older girls who didn't have diabetes, that they will get to be their adult size by the time they're about 11, and then they're done. So they're, you know, the tallest kid in the class, and everybody's like, she's only that age. And you're like, yep, yep, yep, you know. And she's still in her mind, and the way she's developing is still a very normal, like, 10 year old. She's playing with dolls, she's playing with Barbie she's doing very age appropriate things, but she's my size,

Scott Benner 55:24
yeah. So do you find people treat them like they're older when that happens? Absolutely all that happened to my niece, who got tall, really young, and then everybody wanted to, like, talk to her like she was 18, yeah.

Jocelyn 55:35
And it's kind of like I even have to take a step back, or I have to remind myself that, like people who have normal sized children, or like small children. I'm like, look at that little baby just talking like that, you know? Because I am used to having really big kids. Jocelyn

Scott Benner 55:49
is like, looking at a nine year old going like, that sweet child. I can't believe it can talk.

Jocelyn 55:56
I know it's so much shorter than I am. Oh, my

Scott Benner 55:59
god, yeah. What are we not talking about that we should have, by the way, we missed anything? Yeah, I

Jocelyn 56:05
think I wanted to talk a little bit about the perspective of, like, I know when you did your I can't remember what it was called off the top of my head, but like, talking to healthcare professionals and

Scott Benner 56:15
the Grand Rounds, yeah, no, the voices were disguised. Oh, cold wind, yeah,

Jocelyn 56:22
cold wind, I was going with, like, dark horse. I don't know cold wind, so I think, I guess I just wanted to kind of, like, be some middle ground. I just was talking about, like that diabetes is so and we know this. I know we know this, but, like, diabetes is so completely different from anything else that a nurse on a floor in the emergency room comes into contact with that, I think there's this misunderstanding, and just kind of like huge knowledge gap with how diabetes manage their blood sugars, how type ones manage their blood sugars on a day to day basis, where I try to give perspective in my role and In the ways that I'm able to teach people of when someone comes in, I don't like the wording, poorly controlled or poorly managed, or especially in the context of, like, pregnant women coming in with huge insulin needs and insulin resistance at the end of pregnancy, you know, it just kind of creates this like, well, you're not doing a good job of this, because your blood sugar is such and such, we're just going to take it over from here, like, on labor and delivery. If you have two blood sugars over 140 as a type one, their policy is usually to, like, we're just going to take you off your pump and we're going to put you on an insulin drip. And it's not often, but just kind of, like trying to bridge the gap and create some understanding with, like, what a type one has to do to, like, maintain a healthy pregnancy, the level of knowledge that they've had to amass to take care of themselves, in general, in their life. And just kind of, like, coming at it from a like, hey, you've been doing a really great job. And I think, what do you think we can do to take care of you, you know, and or your baby as a team, not like, a hey, we're just gonna take over this from here. Yeah, because insulin pumps, like, you know, the systems that we have now are amazing, and I think they work so much better than an insulin drip would do. They're only checking your blood sugar every hour and then changing the dosing. So I feel like there's such a huge it's hard, you know, like I talked to a type one patient who was an adult man on a med search for the other day because I was in the room for whatever. And, you know, he was talking about how he, you know, felt like he couldn't refuse something when he came in, you know, like they wanted to put him on a different dose. And he felt like that's not right for me. I know my body, but I feel like I'm being a bad patient, or I'm, you know, refusing care. And we're just kind of talking about, like, not medical advice, but just how, like anyone should feel, like coming into completely unrelated sickness, that it's okay for you to say, I'm not going to do that. This is what works for my body. You know that I've, I've been doing this a long time. I've kind of been managing my own self. Can we work together here? Not let me just take over this for you? Right?

Scott Benner 59:08
Yeah? Because you're not going to do a good job, and then I'm going to sit here feeling bad that I let you do it and not feel well. Body wise, you're going

Jocelyn 59:18
to be scratching your heads why my blood sugar is 300 tomorrow morning, like, maybe we should change the lantern or, you know, let them do what they've been doing and work on a, you know, work on that resolution together. But I guess, also just creating an understanding for, like, how it's not that we don't want to understand as nurses and doctors. It's just like, it's not often that we come in contact with it. I agree

Scott Benner 59:43
with you. You're meeting people who you have this expectation of because of the job they have, but they don't have the expertise that they need to give you what you deserve. Honestly, like sometimes you meet people who just know what they're doing for whatever reason, right? But you run into a hospital that. The hospital place with the health people and, like, you don't expect to go in there and go, Hey, health people help me. And they go, I don't know how to do this. You're like, wait. Well, then what the hell? Right? I always think the same thing. It's like, it's like, going to get new tires, and then saying to the guy, like, you have to put the lug nuts back on. He goes, Oh, I didn't know, right? Where's your level of confidence now at this point, because that seems so obvious and elementary to the idea. And you start telling people like, I don't know, they take type ones off of, you know, off their pumps, and then they come in with a big tray of food, and they say, Okay, eat this. We'll Bolus when you're done. And they haven't checked your blood sugar for two hours. And people are like, No, you you can't do that. And then it turns into, well, that's our protocol. And then there you go, like, it's just, you're just off and running. Then they're using their type two protocol on a type one patient. You realize that's what's happening. And you go, Oh, my God, my life is in the hands of somebody who doesn't even minimally understand how I administer my insulin well.

Jocelyn 1:00:57
And that's, that's what I'm saying. It's like, I think getting to be okay with like I'm not being a bad patient. Or it's not that I'm not accepting medical care, but if I am not sitting in front of an endocrinologist who understands like my daily needs, then I have to bring that piece of the puzzle and be okay with like I'm not going to do that. Or, you know, that's not the best thing for me, and I will, you know, I will work with you, and you can give me that IV antibiotics, but I'm gonna, whatever it is, manage my sugars, you know, like, it's your body, you know, and you need to come into it with that, like, understanding of like, being okay with doing your thing. Take care of yourself, having

Scott Benner 1:01:33
said that, that series. I mean, people told stories that I was like, Oh God, really, oh for sure. Yeah, absolutely. Like, oh my God. All right. I

Jocelyn 1:01:40
think I have had really good experiences with, you know, whether you know, like school nurses and like our doctors, but you do feel like you're alone, like, and you're not alone, but you're, you're doing your thing, and you have to kind of walk into it with your own, like, little bit of the attitude, like a little chip on your shoulder, like, Okay, I have this going. I can say no, you know, like, because there's this like, power thing that happens sometimes in the hospital where patients feel like they can't say no. And I hate that. It's your body.

Scott Benner 1:02:10
Yeah, no, I agree. Yeah. I mean, imagine where you would be today if you and I wouldn't want this to happen, obviously, but if you had to go into another ER with one of your other kids, you're like, Hey, I'm here. My kid's blood sugar's 441 and if the person at the desk said, what did they eat today, I guarantee you would have react differently today than you did five years ago. Probably like, yeah,

Jocelyn 1:02:26
like, I probably would say, like, she had five ice creams. So what are you gonna do

Scott Benner 1:02:31
with that? Yeah, that's right, yeah, no, we've been eating for six days straight. We haven't stopped, right? Bowls of cereal all around. Yep, she still has type one diabetes. You know, like, your perspective has changed now. Like, back then, you were probably like, oh, that's silly. I'll just, you know, but I'll, I'll be polite, like, and I'm trying to think of those type ones in the hospital as adults that this isn't their first rodeo, and then it starts happening again, and it's just got to be so incredibly frustrating, you know, oh

Jocelyn 1:02:55
yeah, no. And I felt like that was eye opening. I think everything, like we've been talking about, like, everything changes your perspective. So like, listening to the that series and kind of hearing different people's perspectives of being in the hospital, was like, oh, man, I really want to change that. And I really do try, in my role, I'm able to help with diabetes care and education in the hospital and just come at it from like this, you know, kind of like creating understanding. Yeah,

Scott Benner 1:03:18
it's a great message, honestly, and you do have to go, I hate, see, I hate when people say you have to advocate for yourself, because I don't know what that means. You know what I mean? Like, I know I know what it means, but I don't think people know what it means until you get into the situation and recognize that what it means is a lot of people in this healthcare system might not understand what's best for me, and I have to tell them, well, and

Jocelyn 1:03:38
what other medication do we? Like, there is no other medication that you adjust daily. It's like, if your heart rate was irregular and you had to every five minutes, you're like, Okay, it's going like, 112 now that's a little high. I'm gonna give myself a little bit more medicine. Just to create, to sustain life. You had to keep managing this heart medication. Nobody has that understanding. Like, maybe the ICU, a little bit, maybe Pitocin and labor and delivery, but this like level of knowledge that you've built over your life to survive is not just handed over to someone, right?

Scott Benner 1:04:10
Yeah, no, I once said to somebody, try to imagine if you had to thoughtfully breathe in and breathe out every time. That's what diabetes feels like to me. Yeah, like, every five minutes, if I just spent my life going inhale, exhale, inhale, yeah, exhale, like, that's how it sometimes. I mean, it doesn't feel like that to me anymore, but back then it did, yeah, it definitely

Jocelyn 1:04:35
does more in the beginning, and then, you know, and then you have periods where you're really aware of it, and it creates change, and that's good. And then you kind of go back to like, Okay, this is like, in the background, and we're just gonna be in the middle of sports season. And, you know,

Scott Benner 1:04:48
I know I'm with you, trust me, I've been at this a fair amount of time now, yeah,

Jocelyn 1:04:51
you have, and we've all gained from your experience. We were gonna say something nice

Scott Benner 1:04:56
at the end. I wouldn't talk to every Hold on What was that? Yeah, because the podcast. Been helpful? Totally,

Jocelyn 1:05:01
yeah, actually, a friend that is one of our good diabetes friends now told me about it at camp, and we were dropping our girls off at camp, and we had just met, and she was like, Oh, do you listen to the Juicebox? And I was like, No, what's that? And like, I, you know, dived hard, and all the episodes initially, and then have just been, you know, like always learning something. So I actually, whenever I am blessed to go into a new, newly diagnosed child or anybody at the hospital, I'm always like, Oh, by the way, not medical advice, but please, you know, well,

Scott Benner 1:05:34
thank you. Check up with this podcast. I appreciate that, because a lot of my life is spent trying to keep the podcast being a podcast, and you guys all helping. Really, honestly, I'm probably not having much impact on it at all. Like, it's everybody out there who's really helping, keeping it going. So thank you. I really, yeah, thank you. All right, well, I'm gonna let you go. I think I'm gonna call this episode tired uterus. And,

Jocelyn 1:05:58
yeah, do you know that I have heard that before, like, when I was having my last baby, it's just taken a long time, and the nurse was like, I think your uterus is just tired. That works. You got the gist happy to assume

Scott Benner 1:06:10
that at the end of the birth it was like, I'm going to come out too, because I'm afraid she's going to do this again.

Jocelyn 1:06:15
Might as well I was done.

Scott Benner 1:06:19
When did you run out of baby names. Like, be honest. Like, what kid were you just, like, I don't know, pick one like, by the third one, the fourth one. Were you like? How does like? Did that ever happen? No, I

Jocelyn 1:06:31
really honestly think if they hadn't all started to break, I would have had like, two more, you know. But I think by the time we got to our sixth, it was like, we started kind of getting into these, like, health issues where, like, Oh, they're all breaking gotta, you know, they're all falling apart. We gotta maybe limit this a little bit and kind of figure out what to

Scott Benner 1:06:50
do with these ones. I just figured you're like, you have, like, probably great baby names. And by the fourth one, you're like, I don't know you wanna call this

Jocelyn 1:06:57
one Bob. No, I still think I still see, you know, babies all the time at work. I'm like, Oh, I love that name. I would have used that if we had another one. So

Scott Benner 1:07:04
last we actually did this thing last night where we were talking about names, and my wife was like, oh, calling Cole. Like, I wanted to call you Nicholas, and dad wanted to call you Cole. And then we started talking about other names were on the list, and she started rattling them off, and he's like, those are bad names. And I was like, I know I looked at him. I said, that's why I got him off the list for you, buddy. Don't worry about it. That's so funny, but it's interesting to hear back and people say, like, I almost called you this, or like, I really want to call I have to figure out what it is. But Kelly has this really, like, awkward, like, not awkward, just different female name that she liked as a little girl, and then she wanted to call a daughter that she didn't end up calling her, and Arden, one day, said the same name, and it hadn't been saved yet without knowing that. Yeah, yeah. It was really different. Arden

Jocelyn 1:07:53
was on my list. I love that name, so good choice. Oh,

Scott Benner 1:07:55
thank you. Before you knew my daughter's name, it was on your list. Yeah, yeah,

Jocelyn 1:07:59
all my girls are a name, so I just that was definitely on my list. I loved it. Thank

Scott Benner 1:08:03
you. I appreciate that. That's awesome. I picked that one too. Yeah, all right, I'm gonna hold on one second for me. Okay, okay, thanks.

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#1521 Fueled By Anxiety

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Lexy is a mom of three who’s also opened her home to foster kids. Her oldest has type 1 diabetes, and this episode is a warm, thoughtful conversation about parenting through it all.

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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
Here we are back together again, friends for another episode of The Juicebox Podcast.

Lexi 0:14
Hi, I am Lexi my son Hayes was diagnosed January 4, 2022

Scott Benner 0:22
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. 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 Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com 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/juicebox to get this offer, I created the diabetes variables series because I know that in type one diabetes management, the little things aren't that little, and they really add up. In this series, we'll break down everyday factors like stress, sleep, exercise and those other variables that impact your day more than you might think. Jenny Smith and I are going to get straight to the point with practical advice that you can trust. So check out the diabetes variable series in your podcast player or at Juicebox podcast.com this episode of The Juicebox Podcast is sponsored by the twist a ID system powered by tide pool that features the twist loop algorithm, which you can target to a glucose level as low as 87 Learn more at twist.com/juicebox. That's twist with two eyes.com/juicebox. Get precision insulin delivery with a target range that you choose at twist.com/juicebox, that's t, w, I, I st.com/juicebox, 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, today's episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate. And waiting for you at contour next.com/juicebox

Lexi 2:36
Hi. I am Lexi. I am a mom of three little boys, also a foster mom. My son, Hayes was diagnosed January 4, 2022 we've just kind of been rolling through it since then.

Scott Benner 2:51
Nice. Let's go back to the question you asked me right before we hit record. Yes. So I don't think I've ever just spoken about it while we're being recorded, and I think maybe it's time. What's your concern? Like that? Will you won't have anything to say? Yeah.

Lexi 3:06
I mean, I just, I signed up to be on a podcast, what, five or six months ago, and I think I filled out a little form and and then I just joined today. So I wanted to make sure that we have, you know, something to talk about.

Scott Benner 3:19
Listen, it's not uncommon. Everybody's worried when they jump on a so everybody thinks that they'll be bad when they get to the end of the recording. A surprising number of people tell me it's okay if I want to delete it, which always fascinates me, because I've never done that. So like, you know all the episodes you've heard that you've enjoyed, a large majority of them. At the end of it, the person said, if you want to delete that, I would completely understand. I'm like, What are you talking about? It's like, what are you talking about? It's interesting. The I don't know if it's self confidence or just the lack of experience with the idea, but trust me, we're gonna have a really fun conversation. We'll learn a bunch of stuff about you. I'll probably say something fairly inappropriate, and then it'll be over. It just goes like that. Let's start first with, I don't know why you have so much energy when you have more than three children. How did that happen? What do you are you drinking? What are you doing right now, to be jacked up like this, probably on my third cup of coffee. Okay, all right, that's fair. So how old are you? I just turned 30. Wow. You have 30 energy. How old were you when you had your first baby, by the way?

Lexi 4:17
Oh, 25

Scott Benner 4:20
oh. So have you done anything else in the last five years except make a baby, have a baby?

Lexi 4:25
No, I think I've been, yeah, pregnant a lot, or had kids cycling through my house a lot. It's just been all kids last five years.

Scott Benner 4:34
No kidding, on purpose is that was like a plan or just worked out? Think it just

Lexi 4:39
worked out. I mean, I always wanted to have kids, and we just started having kids, and then we kept having kids, and then we became foster parents, so then there was just a lot more kids. And yeah, how many kids are in the house right now? Right now, just my three. We had a foster son a few weeks ago, but he's not here now. Oh, interesting

Scott Benner 4:58
for a small time. When I was young, my parents fostered a kid. His name was Russell. Hey, Russell. What's up? If he's out there. But now that I've said his name, I'm thinking of the Holly Hunter, Robert Downey Jr, Christmas movie Home for the Holidays. You know that one? I think so Thanksgiving. It's a Thanksgiving movie. Anyway. This is not important. What's important is that at some point in the movie Holly Hunter with her Holly Hunter accent, is that an accent, or is it a list? I don't know exactly what it is, but she says, she goes, hello, Russell, and I saw that. Do you know what I'm talking about?

Unknown Speaker 5:33
Yes. No, yes.

Scott Benner 5:36
Anyway, that's what that just happened in my little brain. Okay, so you got married, you started making kids. You've been doing it for about the past five years. What leads you to foster children when you have so many of your own? Honestly,

Lexi 5:50
I don't know, we're kind of crazy. We actually became foster parents the year my toddler was diagnosed with diabetes, and it's just we're faithful people, and it kind of felt like a calling. And honestly, I was really crazy. My husband was on a work trip, and I was like, I think I'm gonna go to this foster care interest meeting. And he's like, where are you at? I was like, I'm just hearing about it. And my husband knows that I'm a little impulsive, so he's like, Oh, she's going to this interest meeting. I guess we're going to become foster parents. And a few months later, we did

Scott Benner 6:19
what else have you come home with randomly, a

Lexi 6:21
dog. I have done that, I guess, a lot of impulse purchases, but nothing too crazy, nothing like a car or anything like that. But, yeah, yeah, I think I shouldn't say impulse. It just once I have my mindset. I'm like, Hey, we should do this. It's just full force, like, I don't sit around and think about it too much. We just, we just do it. So, so listen, that's

Scott Benner 6:40
interesting. Do you have a lot of success in your life? We do. Yeah, me too, because I've been thinking about this, what you just talked about a second ago, just the idea of having some motivation and then just doing it, like a lot of things that I've made happen for the podcast or personally, or anything like that, is like, I've put a thought together. I've gone, unlike you, I've thought about it for a while, and then I'm like, No, this is a good idea, the realization that the only thing left to do is is just to do it and it will work. And I do that a lot. So listen, did you set your mind on helping someone? Was that the motivation?

Lexi 7:15
Yeah, I mean, I just felt like my husband and I were really blessed at a young age, like with our house, our family, all of these things. And even though, despite this diagnosis of diabetes, I'm sure we'll talk about that, we still just had this community of people. And, you know, the foster care system, there's just not enough foster parents. And I'm like, if we could help other kids with, you know, the community and the resources that we have and and maybe even one day, and we haven't yet have a kid that has type one like, I can't imagine being a foster kid going into the system and then landing at somebody's house and them having no idea about diabetes,

Scott Benner 7:55
right? I've got a couple of after darks about that that are, you know, they're pretty stunning conversations. Okay, so tell me something, once you take a kid in, is there a length of time told you at the beginning, or is that just up in the air?

Lexi 8:08
No, it's just up in the air. And you and you get, you know, I remember our first placement, or, I guess our second placement, they call you and they're like, Hey, we have these two kids coming to your house in an hour. And, you know, nothing. I mean, they just show up at your house. And, I mean, those kids that we had, they had medication patches on their back, and the social worker didn't even know what the medication was. I mean, you you really know nothing how old they were, four year old twins. Four

Scott Benner 8:32
year old twins with medications on their medication patches on you can't ask them, and you, and you say to the social worker, what is this for? And they go, I don't know. I think they smoke too much, like, Yeah, great. They're like,

Lexi 8:44
it's, it's Friday night. The doctor's office opens on Monday. So,

Scott Benner 8:47
yeah, try not to think about it till Monday. Yeah, what did the patches end up being for?

Lexi 8:52
They were like, sedative patches. Because they said these kids had ADHD, and I don't know the the home they were in was putting these sedative patches on them. So obviously, as soon as I found out what they were, I'm like, can you rip these off like, I'm afraid to

Scott Benner 9:05
touch them? Oh, my God. Wait, wait, that's did that end up being how long did you have those kids for three to four months? Did those patches end up being necessary in the four months that you had them? The contour next gen blood glucose meter is sponsoring this episode of The Juicebox Podcast, and it's entirely possible that it is less expensive in cash than you're paying right now for your meter through your insurance company. That's right. If you go to my link, contour next.com/juicebox, you're going to find links to Walmart, Amazon, Walgreens, CVS, Rite, aid, Kroger and Meijer, you could be paying more right now through your insurance for your test strips in meter than you would pay through my link for the contour next gen and contour next test strips in cash. What am I saying? My link may be cheaper out of your pocket than you're paying right now. Now, even with your insurance, and I don't know what meter you have right now, I can't say that, but what I can say for sure is that the contour next gen meter is accurate. It is reliable, and it is the meter that we've been using for years, contour next.com/juicebox and if you already have a contour meter, and you're buying test strips doing so through the Juicebox. Podcast link will help to support the show. The brand new twist insulin pump offers peace of mind with unmatched personalization and allows you to target a glucose level as low as 87 there are more reasons why you might be interested in checking out twist, but just in case that one got you twist.com/juicebox that's twist with two eyes.com/juicebox. You can target glucose levels between 87 and 180 it's completely up to you. In addition to precision insulin delivery that's made possible by twist design. Twist also offers you the ability to edit your carb entries even after you've bolused. This gives the twist loop algorithm the best information to make its decisions with, and the twist loop algorithm lives on the pump, so you don't have to stay next to your phone for it to do its job. Twist is coming very soon, so if you'd like to learn more or get on the wait list. Go to twist.com/juicebox. That's twist with two eyes.com/juicebox. Links in the show notes, links at Juicebox podcast.com. 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/juicebox, or call, 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 the 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, usmed.com/juicebox, using that number or my link helps to support the production of the Juicebox Podcast.

Speaker 1 12:54
No, no. Well, that's

Scott Benner 12:57
upsetting. Yeah.

Lexi 12:59
I mean, they were at a home, and, you know, no judgment to whoever had them, but they were having Mountain Dew for breakfast and eating whatever they wanted all day, and then

Scott Benner 13:11
amped up. Hey, I gave this kid Mountain Dew and a ho ho, and he's acting crazy. Can we set we hit him with a Trank? Oh, my God, oh, the whole world. I don't you ever feel smart like, this is one of those moments,

Lexi 13:28
yeah. And so, can you imagine a diabetic kid coming through the system like that, and you're, you know, the way that they just kind of drop kids on you, and you don't really even know what medications or things that they they have, you know, it's

Scott Benner 13:43
wild. Lexi, does that become, like, the sole focus of your four months? Like, is there really time to live? Or are you, I mean, you know what I mean, like, four year olds, puppies, there's some things you have to, like, stop everything else for. Like, is that one of those things? And then, how do you do that in your life? Do you work? Yeah,

Lexi 14:02
so I did. At the time I was working. I was lucky enough to become a stay at home mom a few months ago. But through all of this time, you know, both my husband and I work full time, we had, you know, toddlers of our own, diabetes, everything. And, I mean, I guess we just really didn't sleep much. But it's

Scott Benner 14:20
time for me to stop wondering if you're kind Are you insane? Is there something wrong with you?

Lexi 14:24
No, no, I think there's just a lot of things we wanted to accomplish and a lot of people we wanted to help. And it's awesome. Instead of probably just waiting and doing things at different chapters of our life, we're like, we'll just sacrifice some sleep for a little bit and just roll through it. And

Scott Benner 14:39
your husband's good with this. Are you just super cute? And you have a nice way of asking,

Lexi 14:43
honestly, my husband's amazing. He just kind of says, you know, whatever you want to do, I'll just support you. And he just, he rolls with it. So it

Scott Benner 14:52
sounds like you're cute, but Okay, all right, now, whatever you want to do, how long have you been married? At

Lexi 14:59
2018, Mean, I gotta do some math here, six

Scott Benner 15:02
years, seven years. Oh, wow, yeah, all right. Well, he seems like a decent guy. He is, he is, I argue about everything that somebody wants to do in the house. I think we should. I'm like, No, I don't think so. I don't think that doesn't sound like a good idea, even like, I mean, it's just the lovely thing he did. He spent four months of your life taking care of these four year olds. Four year olds. Do you know where they are now? Is that difficult? No, it's

Lexi 15:26
really tough. You know, a lot of times when they leave from your home, they either get reunited with their parents with relatives, or they move them to other foster homes. And most of the time, you don't have contact afterwards. We do have contact with our our first set of boys that we had, because they were reunited with family. But it's up to whoever gets them next. If you know they're allowed to have contact and you don't get their information, they get your information and they decide if they want to reach back out to you. So yeah, and

Scott Benner 15:54
they're probably busy with the with the Mountain Dew purchases and everything. There's some good sales once in a while on Pepsi, if you're aware of it. Okay, all right, girl, but okay, I was walking through the store the other day, and I saw three two liter bottles for $6 and I thought that seems like a deal. I don't know, but it really did seem inexpensive. Okay, all right, so your kids, all boys. Did you say that all boys? Right? And which one is the type one, the oldest, the oldest one. How old is he now? He just turned five last week, diagnosed when 22 right

Lexi 16:33
before his second birthday. So January, 2022 Okay, a few weeks before his birthday. Okay,

Scott Benner 16:38
safe to say it was a shock, or you saw it coming? Did you see something happening?

Lexi 16:42
Oh, total shock. We had a six week baby at home, so just in the thick of you know, postpartum times, my husband's grandfather had just died, and my grandfather had died on Monday, and we had a pediatrician appointment on Tuesday to see why my son was peeing through all of his diapers and just drinking water all the time. So it was just a it was already kind of a dark, dark time. Obviously, like most people, after you get the diagnosis, you're like, Wow, all of this makes sense, but at the time, you know, we have no family, no way to really, I guess see it coming. You

Scott Benner 17:21
don't have family like a family history, family history. Okay, sucks. So much bad stuff happened all at once. What was going on during that time with him that made it was it just the peeing, or was there, were there other things, or did hindsight show you other things? No.

Lexi 17:35
I mean, he was just chugging a ton of water, and he was just peeing through so many diapers, and we were doing two diapers at night, and he was still peeing through those. And my kids were daycare kids. We were working full time. And, I mean, the months of September, October, November, December, right before diagnosis. I mean, he had everything, you know, they asked, Oh, has he been sick with everything? I'm like, have you had a one year old in daycare? I mean, everything, Hand, Foot and Mouth the stomach bug to the point that we went in the garage and put a tarp on our living room floor. The stomach bug was so bad. Illness after illness, he was actually diagnosed with asthma during one of his illnesses, so he was already a nebulizer kid. And so I'm sure one of those kind of, you know, kind of play, but

Scott Benner 18:21
Arden had a Coxsackie. It's really common to have coxsack you before a type one diagnosis. Oh, really, yeah, you didn't know. Oh, oh, um, gosh. I'm trying to think of what episode it is now, but at some point, this is a weird, a weird timeline, but yeah, at this point, Sanofi owns the drug called t, z, O, that used to be called temizaplab, but it was brought to market by a company called prevention bio. And I once had the CEO on and he was talking about how one of the other things he's thought about doing was trying to create a vaccine for Coxsackie, because he thought if he could limit the amount of kids that got Coxsackie, he might limit them getting type one diabetes when they were super young. Oh, wow, yeah. So viruses, I mean, frequently lead to, if you're already pre disposed to having type one diabetes, meaning you have antibodies, and it's probably going to happen at some point. A virus can kind of kick all that into motion. And it is not uncommon. In fact, it is fairly common or people who have those antibodies, who are going to get type one at some point to have it kicked off by Coxsackie virus. That all makes sense. Yeah,

Lexi 19:28
yeah. I mean, I knew certain viruses definitely had high risk. I just, I didn't know about that one. I remember sitting in the hospital just looking at all the COVID stuff, right? This was right out of COVID, and it would be hard to pinpoint anything for my son, because, like I said, he had, he probably had every probably had every virus you could

Scott Benner 19:43
have. Did he have COVID as well? Yes, he had all of it. Yeah. I mean, who knows? You know what I mean. But yeah, geez, the kid was like a little, little virus sponge. But also, if his immune system was run down or misfire, I'm just gonna use the word misfiring, which is. Probably not anywhere, right? Like if it was acting up, I guess then it makes a lot of sense that you started contracting a bunch of stuff. Yep, yeah, I'm sorry. It sucks. Did you get the other kids tested? Do you have any idea if they have antibodies?

Lexi 20:12
No, but I'm just coming off a JDRF summit this past weekend, and I think they've finally convinced me that it's time for me to start doing that for my other kids. They're three in one so when I looked into it for my three year old before, he was only like a year and a half at the time. So I think now he's old enough that I could start testing. I mean, I've definitely had the days where I'm randomly pricking his finger, but I know that antibodies, there's so much that they're researching now, delaying the onset that I definitely find it worth it now to start screening them each year. Yeah,

Scott Benner 20:44
we did ads for screen for type one last year, which would help you find out. I think JDRF has a program, trial net probably has a program. There's probably a number of people doing it at this point. Well, I wish you luck. I hope none of that happens. Thank you. Me too. I imagined you did Yes, so you don't have any family issue, but picking through for a second like down to like, thyroid or celiac, or there's no autoimmune in your family, or just no type one.

Lexi 21:10
So no type one, but there has been thyroid on my husband's side of the family, his mom. No, I'm just kidding. Yeah, I know. No, we weren't sure how much that was connected. We haven't dug too deep, cutting, just accepted. All right, this is how it is. And you know, we had those times, especially my son, Hayes, and then his brother was six weeks when he was diagnosed, and you kind of stop, and you're like, all right, should we just not have any more kids? Right? Because this, you know, is in our family now, and you know, we kind of made up our mind then that we're not going to let diabetes stop us from doing anything that we would do if it didn't. So

Scott Benner 21:49
are you trying for a girl? What's going on here? Like everyone

Lexi 21:53
asked me that, you know, I'd be okay be an all boy mom, but yeah, I think we'll definitely have at least one more kid. But I don't want diabetes to stop us from doing anything that we would do if, if we didn't have diabetes. And so I've been pretty, pretty strong on that. And sometimes I spiral a little bit, you know, when you start trying to dig into your family tree and, you know, find the connections. Because I'm like, you know, it, it takes me back to that place of like, oh, maybe, you know, maybe we should think about this. And I'm like, No, you know, I'm gonna keep moving forward. So what's your

Scott Benner 22:26
husband? Like Bitcoin mining? How's he making all this money to take care of these

Lexi 22:30
kids? No, he works for a gym. Yeah,

Scott Benner 22:33
my God, is he stealing from the lockers during the day? That's awesome. I know. I know also, I'm moving to wherever you are because it sounds affordable. Oh, no, we're good for you. That's Are you going to make another like, Are you actively trying to have a baby?

Lexi 22:48
No, not, right now, okay, I have a almost one year old. I need a little break. Yes, yes.

Scott Benner 22:55
Listen, I don't want to tell you what to do, but three is plenty. You're good.

Lexi 23:01
Hey, I've gotten used to four. We usually have four kids around here, so

Scott Benner 23:03
they'll make friends, and then there'll be 19 people in your house, and you'll be like, Oh, we should not have had these many children if it ends up that way. Like, I It's funny, like, my house is for my son, it doesn't work this way, but for my daughter, all the all her friends come here, and so there's a lot of people here. Usually, I love that, yeah, but so much so that, like, if I try to work later in the evening, like she's got friends whose voices, like, cut through, and I'll come down and I'll be like, actually, I'll just say her name, because she'll be thrilled. I'll be like, hey, Assange here. How did you know I'm like, How did I know it was coming through the floor? That's how I knew she's another friend who giggles after she talks all the time like, I know when she's here, like, you know, it's I like that. Her friends think of here as, like, comfortable. Oh

Lexi 23:50
yeah. You want that? Like, I, I would love to be that fair my kid. All

Scott Benner 23:54
right, so let's dig into this, being the mom of a toddler with type one thing. So you get home from the hospital and it's, you know, in your lap, you obviously have a ton of energy for whatever reason. What's your your plan? Did you have a plan? Or were you just lost? No,

Lexi 24:10
I mean, we were, we were really deep in grief during this time, and granted, Emily both just lost our grandfathers. We're in the hospital during my grandfather's funeral. I couldn't even go back to be a part of that. And then now, I mean, I remember at the pediatrician office, they told me, hey, you need to go to the ER. And I remember calling my husband, and he, you know, neither of us had any idea about type one diabetes, first of all. And he goes, Well, I'm sure they'll, they'll fix it, and we'll be good, like he had no idea. When I called him and said, Hey, is this type one diabetes that? That meant forever? He thought, oh, they he's gonna go the hospital and they're gonna fix it. He's gonna be good. And so we all kind of had to come with term, come to terms with that. And you know, on top of that, we have a six week old baby, like we're already not sleeping. You know, you're just, your emotions are in these just, you know, tough places. But. One thing that I'm grateful for, I guess, in the sense, is, even though i What did have a six week old baby, I was on maternity leave, so I was home and had time to really invest in in learning this before I had to send them back to daycare. You know, I can't imagine some of these people that they get a diagnosis, and then the next week they have to go back to work and they have to leave their kid with somebody else. Yeah, I think about that a lot, yeah. And I was very lucky that, you know, I had time, obviously. What do you do? You start scouring the internet and joining all these Facebook groups and just trying to find all the information you can. That's how I found the podcast. And what I figured from the point was, I need to get him on a pump. I don't think I'll feel comfortable sending my toddler back with other people doing these injections, because to me, it just seems so easy to mess up, to just do an extra half unit when it's like his basal was like, point 05, you know? Yeah, you mess up just a little and that's a really scary amount for a toddler. So how quickly were you able to get him a pump? So he was on a CGM within a week and a pump within three weeks, okay?

Scott Benner 26:02
And that was you, you moved that through. Yes, I

Lexi 26:05
stayed on the hospital. But luckily, the physician that we had, we had researched and saw that he was pretty okay with some of the, you know, algorithm looping and different things. That made us think that he would let us get on technology pretty quick. So,

Scott Benner 26:21
oh, wow. And you figured that out through, I almost said the internet like I was 1000 years old. Did you use the box? No. You figured that out through, like, a Facebook group, like, through local people. How'd you how'd you sniff out who this doctor was? Yeah.

Lexi 26:35
So through Facebook groups, and I can't remember if it was our local one at the time, or Juicebox, or which Facebook group, but it was just searching, right using the search bar, looking for, you know, physicians that were kind of up to date, because everyone has those physicians that went to school and they know their medical terminology but aren't up to date on technology at all. Yeah, and we did not want that we knew from the get go that we wanted the cutting edge stuff for our son. And do you really

Scott Benner 27:06
believe that this came from just your concern about letting another person use the syringe on him? Was it the actual poking I should ask, or was it the idea that they could mess it up? I

Lexi 27:16
do think it was the fear of of them messing it up. Another aspect was really like the control, right? When things are going in through a pump, I can go back and I can actually see, oh, you gave him this amount of insulin. And when you just hand somebody a syringe and tell them to dose him, I can't go back on this humog Junior pen and see what you did. Okay?

Scott Benner 27:36
You want to be able to track what they did as well, right, right, all right. I got you. How much did he weigh at that point? Do you remember? I

Lexi 27:44
honestly have no idea, but like, 2040, pounds. He's 40 pounds now, maybe half of that, okay,

Scott Benner 27:49
but he was small, was my point? Yeah, right, right. Okay, and you what pump did you end up

Lexi 27:53
with at the time? It was Omnipod dash, okay, and you using what? Now we're back to the dash, because we loop, but we moved to the Omnipod five for a while. Tried

Scott Benner 28:04
Omnipod five, so you were dash manual. Omnipod five then loop, or did you loop? Okay, you didn't do loop, then Omnipod five then loop. No. Okay, all right, and he's wearing a g7 at this point. Yes, yeah. I figured you got him the g7 you know, it's funny. We're having a conversation online with somebody the other day, and they were like, the adhesive on the on the g7 sucks. I wish it was like the g6 I like this better. About the six like and this thing stinks. And I was like, I'm having the exact opposite experience of you. And it led to that conversation about the fact that this is a it's a piece of plastic and wire and etc, and it's trying to mesh with your, you know, your physiology. And not everybody's the same. So some people have oil or your skin or drier skin, or some people you know, are better hydrated or not. Or I've seen Dexcom is just not work on people. I've seen libres not work on people. And the same device works like magically for someone else. It's interesting. It's, you know, it sucks, but there's no magical way to just make it work for everybody the same, but awesome device. I enjoy it a lot. It's so much smaller, and it's funny, Arden says the sticky stuff is too sticky,

Lexi 29:12
I know, like all the adhesives, but I mean, I'm in a little diabetes mom's group message locally here. And same thing in our group message, like everyone has some people into six. Majority do like the seven, but it's same thing when it comes to pumps, right? Like, there's just no one size fits all.

Scott Benner 29:33
I just love that. Arden is like, this thing's so sticky, and the woman's on the online saying to me, like, you know, it doesn't stick. And I'm like, it doesn't

Unknown Speaker 29:41
everybody's so different. Yeah,

Scott Benner 29:43
it's awesome. What made you go to loop?

Lexi 29:46
Yeah, I mean, we just weren't getting the control that we wanted. And maybe it's because I like too much control. I feel like the five is great if you just want to put in a few settings and let it run. I. Like the detail of loop, right? I love looking at night scout and looking at the reports of how we can change. And then, honestly, as a toddler, everything changes so quickly, right? Oh, I want to snack. Oh, never mind. I don't want to eat that anymore. Or here I'm going to eat this 30 car whatever, and then I'm going to go run down the street to my on my bike or whatever. And I wanted the ability to be able to pivot better. I guess during those circumstances, I don't know, I just feel like we got much better control. I mean,

Scott Benner 30:31
I think whatever works is the best thing. His variables change too frequently for the and the Omnipod five wasn't keeping up with the changes.

Lexi 30:39
You know, he was still in daycare at this time, right? So we still just like a Petri dish. And so he would get sick and his needs would go way up in the pod would learn that, right? And then the next pod change, he would have a lot of lows, and so not having kind of those overrides or profiles. And I know there's ways to manipulate it on the five by changing the target or activity mode and things like that. But it just seemed easier for me to pivot, you know, on loop, yeah, as well, as you know, when he's at daycare, and I know that recess is coming up and he's trending a certain way, being able to pop on the override and not have to bother his, you know, preschool teacher, who also has all these 20 other little two year olds running around, I was able to take off some of the load from her,

Scott Benner 31:21
right? Doing it remotely with loop. Yes, yeah. So listen, I think it's, I think loops awesome. So, yeah, okay, what's it like? I guess, like, day to day, I'd like to know, like, you know, I raised the toddler on MDI and then eventually on a pump. But the truth is, I was using the pump like MDI for a while to begin with, just, you know, it was just a replacement for the shots in the beginning, before I really knew what I was doing. So what's it modern day like raising a little kid with type one, like, what are the things that you constantly struggle with, and what are the, what are the ways that you found to get around them? Yeah, so I think

Lexi 31:57
for haze, I mean, the biggest barrier or things that I found, I guess this is with any kid with a diagnosis of anything was just being different, right? I remember he went to daycare one day, and they were doing they were giving little M Ms whenever a kid got something right, and the teacher didn't reach out, and she just decided, like, oh, he has diabetes, I'm not going to give him M Ms as a reward. And they ended up giving each kid, like, 4m Ms, which is like two carbs. I mean, he could have just had it, right? But they didn't know, and they went and explained it to him that, you know, just like so and so has an allergy to peanuts. It's like your allergy to sugar.

Scott Benner 32:34
Awesome. This lady is the lady who put the the Mountain Dew and the four year olds. Is that? Right? You're here to tell people.

Lexi 32:40
That's how I felt at the time that he carried the weight of that right kind of law, I'm allergic to sugar. And it's like, no, you're not allergic to sugar. But just realizing like, Hey, you are going to be different and going through school, or any of these situations, like, there are times that I'm going to have to pull him out and do a pod change, or make him sit out and have a Juicebox. And you know, that was a really, really hard thing to come to terms with.

Scott Benner 33:05
Yeah, it's difficult Lexi to know, and it sucks to have to do it at such a young age. But like anybody who's got kids, you know that there's this moment where you have to explain to them that everybody might not be terrific all the time. Yeah, you have to start saying, like, oh, you know, well, that, that lady, she doesn't know what she's talking about. Or, up until then, they think, you know, I don't know. That's my teacher. That's like, that, that woman, you know, she knows what she's doing. That guy knows what he's doing. Like, you know, he's in a position of power. Like, the first time, you have to start telling kids that everything's not perfect. It's sad. Like, because you had to tell your kid, listen, this woman, who we told you, is going to take care of you, and she knows what she's doing. All these people do right? They didn't know this, and they're wrong. And then you have to now, you have to talk him out of believing what they told them. It starts that whole journey of learning what the world is, and it sucks, if it has to start too early, that's all I think it does.

Lexi 34:01
Yeah, it does. But I will say, like, especially Foster Care has given our family such perspective, right? I mean, one of the sweetest videos on my phone was I had, was our first foster placement, a four and six year old little boy, and he always wanted, he never did a pod change, but he was just always so interested in what I'm doing. You know, it's two year old haze and all these devices. And it he filmed the video for me. I was like, hey, I need to film a video doing a pod change for, you know, grandparents or whoever needs to change this. And he's sitting here going, and there's this device and and we got to put it on his butt. And it's just like, the cutest thing, yeah, it's a little voiceover of the six year old little boy. And you're like, Wow, this boy has to deal with such hard things, but and so does haze. But they're different, and everyone has hard things that they have to deal with. We just they're all different, and sometimes they're invisible, and sometimes you can see it on people. But you know, in this life, we all experience hard things, so why do. Uh, yeah, harp and just, you know, keep moving forward. How'd

Scott Benner 35:03
you learn that? What did you experience that was difficult before this, before the diabetes, honestly,

Lexi 35:07
the diabetes was a huge turning point in my life. I mean, I think before that, the only other thing that felt really deep, which may sound silly to some, was we had to re home a dog because they were aggressive to Hayes when he was a baby. And, you know, at the time before you have kids, dogs are like, your babies, yeah,

Scott Benner 35:28
Lexi, you seem like young to me. Like, just because you're 20, you're much younger than I am. But so in your, I was gonna say your young life. I don't know why, but in your life, like this, diabetes is the first, like, real objectionable thing that happened. Like, would you say your life was like cruising along until then? I mean, ish,

Lexi 35:47
I definitely had loss of lost other grandparents and things like that. But I will say that diabetes is the hardest thing I've ever overcome in my life. And maybe that's because it was my first kind of true, like adult, deep grief, where you're like, This is changes my whole life, right? Losing Someone different things like that, like, I, you know, you move through the grief, but this is something that I have to deal with every single day. 24/7, and this is on

Scott Benner 36:14
me. You're not looking to lose a grandparent, but if you are in your late 20s, is not terrible, like, it's not that's not a bad run for them, right? They were probably almost 80 years old, right? Yeah. So I take your point. Has anything happened since then? Have you been like, wow, I didn't realize how much easier this would be now that I've got this perspective. Or are you like, waiting for the next shoe to drop? Are you like, I'm ready? Is like, something bad gonna happen? Because I know what to do now. Did it start off a chain of events, or Has it just been this, this diabetes thing, and that's what you're dealing with now, and nothing else big has happened yet? No.

Lexi 36:48
I mean, obviously some of the moves from our foster kids have left us in a little bit of a grief period for a little bit nothing. I'll say diabetes has definitely given us this huge perspective where things don't seem, I shouldn't say, things don't seem as hard. What's that quote? Where it's not, it's not that things get easier. You just get better equipped to handle them. Yeah. So I do think that diabetes just gave us a huge perspective shift. And, you know, we have a huge, I mean, community. We've been blessed with amazing family and and when we got the diagnosis. I mean, I dove into all of these diabetes groups. I'm involved with JDRF. I have this diabetes moms group message and being with other people who who get it. I don't know. I can't emphasize that enough. I don't know

Scott Benner 37:35
how to explain it exactly. I realize it's probably pretty simply explained, but to me, it seems like for the amount of good that comes from it and the amount that you get out of it, there should be a deeper explanation of what it is. But I think in the end, just having people around to understand is incredibly valuable. And you know, if you can get help from them or information from them, that's a bonus, but just them being there is a big deal.

Lexi 38:00
The keynote at the JDRF summit this past weekend, she was amazing. She said type one for 40 years, but she put up a little meme of this Husky floating around in space, and she's like, just having someone who can just sit there and just say, I have no idea together. You don't even have to have the answer or anything, but just a group of people that were like, Hey, we just all have no idea, but we get it, we understand it. I mean, that's truly, you know, just having another diabetes mom and texts at 3am when you're trying to get, you know, this low, to come up, they just get it, and you and you feel better knowing that someone else just gets it. Yeah,

Scott Benner 38:33
I think you can almost take away the underlying shame that you have for not being better at something or knowing something. You know, I don't even know if that's always conscious, that people feel ashamed, but you do, like something happens and you don't know what to do, and you have that like, oh, that dread feeling if somebody else says, Oh, I don't know what the hell that is. Either you go, okay, maybe I'm not supposed to know what this is, you know. And like, maybe we can find out together, or I can find out separately, or whatever, but at least I'm not here beating myself up consciously or subconsciously about a thing that I'd have no way of understanding, right? Yeah, it's pretty nice. Tell me a little more. Like, you do you like, WhatsApp it or how do you guys, where's your little group?

Lexi 39:12
Yeah, we just have a text message. I mean, we it just grew from, you know, connecting with one diabetes mom in the area, and then she knew somebody, and I knew somebody, and then we just all put ourselves together so we all live locally and can meet up and go out for margaritas, and, you know, complain about diabetes away from our young kids, and

Scott Benner 39:33
then go back, Lexi, what are the complaints? Oh, I haven't

Lexi 39:37
slept in three nights because we had, you know, stomach bug, or, you know, one mom has a Dexcom prescription for every two days because the her kids allergic to every adhesive. And, you know, I don't know, just kind of all the different things that were that we're going through. But then we also share resources. I mean, some of the kids in our group, you know, are already on. In elementary school, I just registered Hayes for kindergarten. So, you know, at daycare, I kind of just got to tell the teachers, you know, hey, this is how I want you to handle it, and they would do it. And, you know, just hearing from moms that, hey, the public school system is a little different, you know, they go by your health plan and, you know, different things like that.

Scott Benner 40:20
Yeah, no, it's interesting. I wonder if anybody's ever gotten together a group and somebody said, like, Oh, I like this podcast. And then somebody else goes, I don't like that guy. I'd love to hear that conversation. I would fly on a wall for the conversation where people are complaining about me. Would be awesome. I would love that. Can you make that happen? Can you just lay your phone down when somebody starts really complaining about me. I would love that. I'll

Lexi 40:42
try it for you. I will say I all of our all of our group are fans, but I'm sure there's groups out there.

Scott Benner 40:48
Does your group have a name? Have you guys given yourself a

Lexi 40:51
someone named it? The Diabetes moms? Are you in the set? I don't think I've ever said it out loud. It's just the text message. When

Scott Benner 41:00
one of Arden's friends texts her, it's like, her name with like, a saying and a bunch of emojis, and when the voiceover is on it, like, speaks the whole thing out. It's infuriating and hilarious at the same time, because it's like, blah blah, blah emoji and this emoji and that emoji. And I'm like, oh my god, I love that. It's fun. Well, that's that's nice. Are they? Are you guys? I'm trying to find out, are you spread out over age? Like is the diabetes, the thing that brings you together, and doesn't matter that one of you is 30, or one of you is 45 or or are you similarly aged? We

Lexi 41:33
are similar age. Our kids are probably all of our kids are probably eight and under. Okay, so, yeah, I think our kids are around the same point

Scott Benner 41:44
while you're together. If you can come up with a fix for what happens when I'm wearing my headphones and the beeping goes off really loudly, I'd love that to not happen anymore to me, because that still happens sometimes. Whole brainstorm, yeah, if you guys can figure that out, do you have the when the Dexcom follow goes off in your ears and you're wearing your headphones. Does it announce it to you? Because I get like, a voice that says it's Beep, beep, high glucose notification from Arden even 99 that's what it says to me. It does that happen to everybody or just me?

Lexi 42:13
I don't know. I see I'm on my laptop and I don't use my headphones much in my phone. Oh, oh, I do content. I don't have the problem. Sorry. I

Scott Benner 42:21
don't want to listen to the people I live. The people I live with, so I put my head. No, that's not true. I you know, it's funny, like we live in such a digital household, like people go to school, they are working digitally. Like everything that you almost have to wear headphones to do anything because somebody else is doing something that can't be interrupted, happens a lot, actually. Oh, you don't have that problem yet. No,

Lexi 42:42
I'm in the toddler household, so it's just loud little squeals and, yeah, tears and laughs all day, right now

Scott Benner 42:49
I get like, stink eye like, for like, doing the dishes at the wrong time, like I'm on a meeting. I'm like, Ah,

Lexi 42:55
okay, no, I told my husband. I was like, you have to work out the home if I'm gonna be a stay at home, mom, because there's no way that I can keep these three little plus, you know, other kids.

Scott Benner 43:05
Oh, your husband's like, I have to go to the gym now and work

Lexi 43:11
and work, that's right. She tell him,

Scott Benner 43:13
look, we've been together a while now, and we've got three kids. I don't even care what you look like anymore, so you're not doing it for me exactly. Just keep getting paid, just his mental health, yeah, exactly, just for him, just for him. Yes. Do you work out at the same or did you work out like he does? Or you guys not do it together?

Lexi 43:33
I do. It's kind of embarrassing to say we have three gym memberships because we all like working at different places. I definitely need that too. Yeah, it helps. Oh yeah, it was good practice too, with diabetes. You know, I feel like the big things that I wanted to share today was really one of of hope, right? I didn't stop having kids or stop pursuing dreams of being a foster parent and things like that, just because of diabetes. And another one being community. Obviously, you know, you have to find your people who can step up for you. I mean, now I have babysitters and people to bounce ideas off of and resources off of, and just sharing my 3am you know, crying sessions or whatever. But the other one was just like feeling empowered and preparation, and I feel like just, you're saying a bold with insulin like that was the biggest thing when I got the diagnosis, was I was just scared, right? And when you're not confident in something, I don't know that the anxiety creeps in and the numbers are all over the place. And the gym was like a really good place for me to start practicing. You know, I put together a million documents for my son, and just really practicing putting those together and putting my son into a childcare place, but still being on site, right? And so not only am I getting my some help with my mental and physical health at the gym, but I was also practicing leaving my son somewhere and practicing what information did they need to know to care. For my son. Yeah,

Scott Benner 45:01
I practiced with Arden upstairs. That's how I did it. Oh, really, that's what that texting diabetes episode, it's like, episode four of the podcast is about, it's about the day like that. She was upstairs and needed insulin, and I just didn't feel like walking upstairs, so I texted her, and I had to go listen to that. Yeah. And then she did it. And I was like, Oh, that worked. And then I thought, like, I could do that when she's at a friend's house, or why couldn't I do that while she was at school? And then I got real apprehensive about it, and I was like, What is stopping me? Right? Like, What's stopping me from doing this? I just watched it work, and I realized at some point, like it was just my fear, like I had this idea that if I was with her, I could stop something bad from happening, but if I wasn't with her, then I couldn't. So not okay. But then I just practiced again, like she's across the street with a friend. And I was like, hey, text here. And I was like, I could run over there if I had to, you know. And then it worked. And I was like, Oh, okay. Like, it's what you're saying. Like you were practicing leaving him somewhere. I was practicing monitoring and advising from a distance. Then once a week, caught our, you know, our rhythm with that. Then I moved it on to school, and then, boom, everything got better and better again. So, you know, it just occurred to me one day I was like, the only thing stopping me is that I'm afraid. Like, if I stop being afraid, maybe I'll be okay. It's nice to hear you say that that idea of like, being bold was helpful to you, because I haven't gotten away from it. It's just the podcast has grown so much that I don't think I talk about it as much as I probably did in the past. But I've seen like, that phrase be, like, foundational for so many people. People bring it up to me, like, no lie. Like, constantly, you know, like I was bold today, or like, Thank you for reminding me not to be afraid, like, that kind of stuff. I just didn't know how big of a deal it was going to be at the time when I said it originally. So it makes me feel good that that it helped you and and I love the idea that you practiced. I'll leave him at the gym with somebody I'm I'm close, you know, it's awesome.

Lexi 46:58
It's huge. And it kind of represents just confidence to me, right? You know, feeling empowered with insulin because, yeah, it is. It's such a scary thing when you get started. So that phrase definitely. And now we just had our first play date a few weeks ago. I dropped him off at somebody's house. Has no experience with

Scott Benner 47:17
type one. What did you tell them? I'm so interested. How much did you tell them? Yeah, so I

Lexi 47:22
have a little card that I had made, like a little postcard size, that I leave with him at the gym, and I leave with him at church. So times when I'm close by and it just talks about lows, you know, you need to give this smarty, this smarty, and then you need it tells you, like, hey, you need to call me if you're doing snacks, if you're doing any crazy exercise activities, that kind of thing. But I think in situations where he's just going to play for an hour or two, that's all they need to know, right? And that's a big thing that I've really worked on the past few years. I've created kind of all these guides for different people. You know, there's a guide for when they go to church, when they go to the gym, when they go this little play date, there's a guide for, you know, daycare, and then there's a guide for like my parents and my aunt and uncle and people who have a little more experience, where I want them dosing for fat and protein. I want them doing those extra things, but yeah, for things like those play dates, you know, I was nearby, and all they needed to worry about was low blood sugar.

Scott Benner 48:23
How does it work out like so you have the card. Has the card ever gotten used? Yeah.

Lexi 48:27
I mean, I have just, like, a little clear bag, and I put his phone on so that the Dexcom number just stays up. And then there's this little postcard that says, hey, under 85 give one of these Smarties. Under 70, give two of these smarties and anything else. Call me. I mean, now with technology, it's amazing. I mean, my five year old's wearing an Apple Watch. They have a cell phone, like I when I call him and he's at the play date, he answers me on his watch, and I say, go eat a smarty. You know, it's way different than when he was two years old, yeah.

Scott Benner 48:56
Oh, I know. It really helps. It's funny. I can't believe you haven't heard that episode, the episode four, like, because you're doing it, you're just doing it with a smart watch, I was doing it with a cell phone. Like, it's, it's awesome, you know? And he's good with that. Is he very just, like, does he have like, a boy attitude? Does he just stop for a second? Do the thing keep going?

Lexi 49:16
Oh, yes, yeah, yes. And we've had to have lots of talks of, like, hey, you know, I'm gonna let you go to your friends houses. I'm gonna let you run down to the neighbor's house, as long as you continue to answer the phone when I call you, and you know, until you're not answering the phone or, you know, not keeping up with it, then we'll have to have a talk. But you know, as much as you'll, you know, answer when I call you and continue to do these things, and you know your parents want you to do these things, and don't want diabetes to hold you back. So

Scott Benner 49:42
he's responding well to that Absolutely. What do you think his understanding of diabetes is?

Lexi 49:47
He's pretty well versed. I mean, he doesn't remember life before diabetes, so it's just always been his life. And he likes the perks too. You know, when he goes to his friend's house, they're like, wait, you have a cell phone? He's like, Yeah, I have a diabetes. I have a cell phone. Hey, you have an app watch? Oh yeah, I have diabetes. I have an Apple Watch. You know when he's eating a smarty and his three year old brother screaming for Smarties? And he's like, Oh well, I have diabetes, so I get Smarties. But as far as you know, he knows when he's high he needs insulin, and when he's low, he needs sugar. And that's kind of, that's it. Extent, yeah,

Scott Benner 50:18
like, so you haven't had any of those, like your immune system, like you don't, you haven't discussed any of that. Does he know what happens when he gets low? Does he know why it's so important, or, like, what's the level of understanding you gave him so he knows that I have to answer the phone? Is it just so that I can continue to go outside, or is it because I don't want to fall over and have a seizure? No,

Lexi 50:36
I don't think he truly understands. He's never felt his lows. I mean, he's been as low as I think the lowest I've seen is like 32 and he no symptoms, okay to him, it's just, I need to answer the phone if I want to continue to go to my friend's house by myself without my mom

Scott Benner 50:52
coming. This lady here, I got that. How did the mom the first play date? How did she handle it? Like, do you think she you know what I mean, like, was she nervous? Did she just not understand enough to be nervous? How did that work? She is definitely

Lexi 51:06
one of my, like, type B mom friends, and so she was not nervous. And I think that's why I kind of picked her to be the first one to try it. Because, again, within the age of technology, if something were to happen to Hayes phone, where I couldn't call his phone, I'd call her phone, or I have her husband's number, or however, and at least I hope that, because I simplified it so much that I gave her the confidence that if he goes low, he just needs to eat the smarty. And if, God forbid, anything horrible happened, I have this GVO pen that's like an epi pen that I need to stab into his leg.

Scott Benner 51:39
Did you tell her about the GVO hypo pen, yes, but

Lexi 51:43
I always frame it that, hey, it's just like an epi pen. Rip off the cap, put it in this thigh. It'll be hopefully you never have to use it. Yeah?

Scott Benner 51:50
You on purpose. Pick the the mom, you know, who is like, oh, that's fine. They could probably smoke crack like she's got that vibe, right? Yeah,

Lexi 51:57
yes, yes, because I have another mom friend who he's loves them, but I know that she would just be anxious and on eggshells the whole day, or the whole play date, I should say. And so I think it was a good one to kind of, yeah, you didn't put it on her, right? That's nice, right? I mean, I stayed really close by, just

Scott Benner 52:14
like, and I was behind a bush Scott outside. If

Lexi 52:18
you've seen some of the the childcare attendance at some of the gyms I've left to Matt, you know, this is way better. You're like, some didn't even look up at me when I dropped them off from their cell phones.

Scott Benner 52:30
Yes, diabetes. I don't care. I won't be paying attention. Thank you scrolling on Instagram. Yeah, I'm 14. Yeah. Have you seen the dress that Zendaya wore to the Grammys? Yeah? No. Look at this lady, this I'll show you. Oh, it's cool. I think this is a very healthy way to figure it out, you know, because the expectation that everybody's gonna care the way you care, or that everybody's gonna do the thing they're supposed to do, I think you can get lucky and meet people like that, but you can't. You can't be sure you're gonna meet those people, and you certainly can't hold those people to standards, whether it's, I mean, look, I get myself in trouble here a little bit like I get there's 504, plans, and the schools have to do like they have to do what's in the plan, and blah blah. And that's all well and good, and I believe in that too, right up until it doesn't happen, and then, you know, you can argue about it later what they were supposed to do, but it's not going to help you in the moment. So better, in my opinion, it sounds like your opinion, too, to navigate the world as it is, instead of trying to make the world what you want it to be, right? Is that what you're doing? Yeah.

Lexi 53:29
I mean, those health plans, like, oh my gosh, like the ones you get after your appointment with your Endo, just so confusing. So, like, not in how we think or how we act, like, Absolutely, like, those physicians aren't living our day to day life, you know, and I know that they have to kind of do this one size fits all, but it's not, it's not one size fits all. I mean, we all manage differently. And I think as much as you can take information complex information, just make it very simple and just tell people what you need them to do. I mean, the person who's watching your kid for an hour does not need to know all the pump instructions. They don't need to know all this extra information. Just take the complex, make it simple, and just tell them what they need to know in order to keep the kids safe. You and

Scott Benner 54:12
I would get along. Lexi, I think I know why you like this podcast. Yes, I don't have an expectation that everybody's going to run around doing everything perfectly all the time. No, and and I also believe that there's about a bazillion ailments, problems, diseases and life struggles that I don't understand. And if you just ran up to me and started explaining them to me, I'd be like, I don't know what you're saying right then after that, if I said I don't know what you're saying, you said no, but it's very important, because you're in charge. Now, I'd be like, No, I'm not you got the wrong guy? No, thank you. It's just a very realistic way of looking at it. Yeah, I don't understand what happened to you. Like, see, you're 30, you have three kids, you've fostered people. You're being very realistic. Nobody beat you when you were a child, or something crazy didn't happen to you. No, you just leveled up from the diabetes. Were you this person before diabetes? I was, what the hell? Lexi, yeah, good for you. What did you go to college? I

Lexi 55:08
did, NC State. Would you major marketing? Oh,

Scott Benner 55:12
you do understand people? Then I do, yeah, marketing, I It's, I hate talking about it, because it makes me feel bad, because it is targeted manipulation. It

Lexi 55:22
is, it is, oh my gosh, right. It's, it's

Scott Benner 55:25
psychology, really, yes, yeah,

Lexi 55:28
1,000% but it has, it's helped me so much. And, you know, all the things that I've prepared for Hayes and, yeah, what have you marketed so far? I shouldn't say I've necessarily marketed. It's more taking the complex? Well, I guess it is marketing, taking the complex and making it simple and gearing different guides towards the different people that watch my son, I think, has been a huge, huge thing, because, again, I don't let diabetes change our life. My husband and I go on trips without the kids. My kids, Hayes went to daycare for three years before I became a stay at home mom. He goes to the church daycare. He goes to gym daycare. He does overnights with my aunt, with my parents, like we don't hold back just because of diabetes, and the only reason we're able to do that is because maybe I'm a doomsday prepper, I don't know, but because I have so many type you know, plan, A, B, C, D, E, and so many guides and things that I felt confident leaving him in different situations. And so

Scott Benner 56:26
is there a concrete bunker in your backyard? What are we talking about?

Lexi 56:30
No, if my husband would let me, probably

Scott Benner 56:32
you're not anxious. There's sugar hidden. Sugar hidden everywhere. Oh, you're prepping for diabetes, stuff, Doomsday, diabetes. Yeah, you're not. You're not hiding from the from the rooskies or anything like that. Like in 1953 I got you okay? Oh no, no. Oh okay, I see, oh yes, you're I was gonna say like, You're not an anxious person at all, right? Are you? Yeah, it's anxiety keeping you focused. I

Lexi 56:58
think it does. I think it fuels me. That's probably just the coffee. It's

Scott Benner 57:06
probably the coffee and the anxiety. Interesting, okay, yeah, what have we not talked about that we should have? So

Lexi 57:12
I think, you know, like I said, the big things that I really wanted to drive are just that, you know, there is hope. I just remember such a dark period after diagnosis and and life does, life resumes, and so many people fight so many hard things, and this is just our hard thing. You know that we

Scott Benner 57:30
have to push through. Have you ever heard the episode do hard things? I think so. Okay, so I came to grips with this idea when a mom came on the podcast and shared her story in Episode 303, it's called do hard things, and I think it ran as the best of last year at 1287, as well. The long and the short of it is, is that she was on her way to her kids endo appointment on like tragically snowy roads, and the car crashed and her kid died. I can't imagine she reached out to be on the podcast, because she said the podcast was still felt. It made her feel connected to him. I don't know, she just told her story, and I thought, like, wow, yeah. Like, she's still going, you know what? I mean, yeah, it's incredibly inspirational, like, because it's, if you think about all the things throughout your day that you let way lay you, or something that you get pissed about, that lady would trade anything to have your problems and and I find that, like, valuable. And anyway, it's, it's what I think about now, when I think about all this, like, if she can push through that, I mean, what is it I'm supposed to complain about, right? You know what I mean? Yeah, I can imagine. I love complaining. Lexi as sport. I just want to say a sport, yeah, but like, in my actual, real life, like I'm not running around, like feeling that and and I have that feeling in me. I'm like, you know, the worst thing that happened to me so far is bad. I don't think it's important or good to measure your bad things against other people's bad things. Yeah, it's all relative. It's all completely relative. The worst thing that's ever happened to you is a really bad thing, right? Just because somebody else had something happened to them that's worse doesn't mean my thing's not important. But at the same time, you can derive perspective from it and say, Okay, this sucks, but I can keep doing this, and I don't know I that's sort of it's a big help to me that her coming on and sharing that, that story. So anyway, wait, I just bummed it right out at the end. Look at that. Can you tell me please, for this is for my edification. What do you like about the podcast? Why was it helpful for you?

Lexi 59:38
Yeah. So I think for me, I'm very I love, like, practical tips. So I always look for the episodes, like, on all the variables on all like, I want to know exactly how to dose for fat and protein. I want to know Pre Bolus timing, like, those are the pieces that, again, gave me confidence in order to, you know to dose that and move on to. The pumps that we do and things like that.

Scott Benner 1:00:01
So, so you like the management stuff, mostly? Yeah, I've always been

Lexi 1:00:05
like that, you know, we went to the JDRF Summit. My husband's going to like the feel good, like, you know, psychology sessions. And I'm like, No, I'm going to clinical research. I'm going to, you know, the I like the hard, tactical things.

Scott Benner 1:00:17
So when you talk about your friend group, your friend group around diabetes, it's not supportive as much as it is more about like, figuring it out so you can get it done and get it right.

Lexi 1:00:25
No, I do think that group is more supportive, okay, but I think personally, I like to look for the hard I like to look at data. I like to look at, you know, I tell my aunt when she watches my kid and they're going in the hot tub, you know, I want to rule for how much juice he should be sipping on in the hot tub. And it's, you know, I tell her to take his carb ratio and multiply his insulin on board, you know, like, I like to have those shortcuts and try to make things more concrete. I'm always interested by what people take from it, yeah, for me, it's absolutely, it's more of those management tips, yeah, whereas I think some of my friends in the group, it's probably more the stories, right? It's interesting, isn't it? Like you're a

Scott Benner 1:01:04
management person, but somebody will probably listen to you for your story. Yeah, Circle of Life ish, that's all. Yeah. I'm gonna tell you something on this recording, because it basically sets a six month timer for me to get something accomplished. Okay, okay, this is how I hold myself to account because but for the next six months, only you and I are gonna know about this. Gonna know about this. Okay? And probably your friends I'm gay, and then if they can't keep their mouth shut, whoever they tell and whatever, that's fine. I don't imagine people are running around talking about me in their private time. Never know. You never know. Actually, it is weird to know that that does happen. It does started a few years ago, I dove into the idea of, like, an online community for people listening that's outside of Facebook, not in place of Facebook, outside of Facebook. I looked at it, I liked the platform a lot, but it didn't feel completely baked all the way yet. And some three years later, the company's still going, and they've got their product. It works right? Like, it's good. It'll allow people to message with each other. It'll allow people to use, like, a Facebook type function. But it won't just be one feed. It could be like, like a feed for Omnipod, a feed for Dexcom, a feed for, you know, ever since three six, like, there could be a feed for all different kinds of topics. People could message with each other. They could do live video chats with each other from inside of it. I could chat live to them if I wanted to. Like it has a lot of functionality. It works really rock solid, and it has an Android and an iPhone app. It's expensive to run, and so what most people do, the reason they're expensive is cool. What most people do is they start niche communities than charge people to be in them and they make money off of them. That's what the platform is, I think, generally used. But I don't want to, you know me like, I'm not looking to charge money from people like, so what I think is, is that I'm going to set it up initially as a place where there are courses that are built off the information inside the different series in the podcast. And so you can kind of take like, like Quizlet type, like courses like, you know, love that, yeah, right. And then like, quiz yourself on it at the end, see how you're doing, like, get through it, maybe, like, level up, or whatever. And then at the same time, if you want to build a community in there or talk to people, it's there. If you want to, I think I have to charge the tiniest bit of money to keep out what I would call nudnix, which is might not be a word, you know, I don't know where in the country, yeah, lunatics, crazies, that kind of thing. Yeah, yeah. To keep those people out, I'll probably charge like, a couple of dollars a month, like, just enough that a person who has a bad intention would be like, I'm not paying that guy $2 a month so that I can on people. Like, you know what I mean, like, I'll go on people for free somewhere else. It won't cost you, you know, it won't cost you about any like, I don't want to measure people's money. I don't, I don't, like, count other people's money, but I'm assuming, like, you know, 20, $40 a year is, like, manageable for people, and then that's it, like, that's what I want to do with it. And then I want to move it around. I'd like it if doctors offices started becoming aware of it. I think that's like, a way to help people get to the information that a doctor's office could stand behind. They could be like, hey, look, there's this thing. It's, you know, very cheap or free. And, you know, here's, here's the feedback we're getting from people about their outcomes and stuff like that. Anyway, it's a thought I had, and I am working on it right now.

Lexi 1:04:27
Yeah, I love that. Do you see it? Yeah, especially even, I mean, I guess this would have to be another, the next edition of it. But I just think about even training the daycare like, you know, our our hospital, tried to do a zoom to teach the daycare just basics and like, how cool, just to have a quick course to like, give the daycare teacher of like, Hey, here's the basics. Diabetes,

Scott Benner 1:04:49
the reason that's super doable, Lexi, and the reason why I'll be looking for suggestions from people in the future about that it's allowing me to take like, the entire like, series of bowl beginning episodes. It's and tell it like, look, here's what I want out of this. I want every actionable thing that's set in here, like, every piece of every suggestion, piece of advice, you know, actionable step that you can take about diabetes it's in here. Like, pull it out, make a list of them. Great. I'll take that list and tell me a colloquial way to explain it. Great. Now turn that whole thing into a quiz, and bang, bang, bang. It all comes back out again. You could exactly. You could feed an AI model the bold beginning series, and say, give me the information that's in this series that would help a person who doesn't know anything about diabetes manage a child for two hours. I love that. And it would pull it out, and then you could turn that into something. It's been a year and a half now since I first realized that probably every answer that people need exists inside of the conversations in the podcast, yeah, and I need to extract them like Absolutely. That's what an AI's the future listen. It takes what I would tell you, would probably be a solid month's worth of work, and it does 90% of it in an hour. Then you can sit down and actually do the human part of going, like, is this, right? Is this, you know, is this something I want to say? Is this the way it wants to be said, like you're not asking it to just give you the finished product and never look at it, but Right? It gives you the starting points. Oh, the heavy lifting gets done real easy. So I

Lexi 1:06:23
use chat GPT to help write some of my guides. Diabetes guide, oh, sure. You know, just, hey, can you make this more sustained? You know? Yeah,

Scott Benner 1:06:31
clean this up, yeah, like, you know, where the column, where do the commas go? Like that, yeah, the little stuff like that, that it's able to do right now is awesome. And, you know, some people have misgivings about it, and some people are just, like, downright scared of it. And May, they might even have, like, good reasons. I'm not saying otherwise, but the last version of it that came out, one of the newer versions, is just like, it has thinking. And before you would ask it something, it would be like, This is the answer. You're like, oh, okay, now you can tell it like, think about this, then go over it again and make sure that it's right, and then double check it again, and then go back to the source material and make sure that you've got all the quotes correct, like, and it takes the time and does all that. And so the returns are getting better and better all the time. It's pretty, pretty crazy, but I think it's at the point now where it can I can trust it to mine my own content and give it back to me in a way that I can now more manageably go through. What's the alternative? It's like Scott sits down and listens to 1000 hours of podcasts and keeps hand notes while he's listening. Like how I can't you know what I mean? All right, listen. I like you. You were cool. I appreciate you doing this very much. Anything you want to say before we go,

Lexi 1:07:43
no, but can you just say hi to my mom, because she is one of the most religious listeners, and I think that'd be super cool. Do you

Scott Benner 1:07:52
think she's a religious listener? Like she's religious and she listens, or she listens religiously, or listens religiously, but not religious. She's very religious. So one question I didn't ask you, like, like, for for the life of me, I'm like, is this LDS? Like, you got three kids already you're 30, but then I thought you'd have more by now if you were, yeah, yeah, no, I could smell my way around the different religions. I know Europe, yeah, this is just regular, good old fashioned religion. You're not building an army for God or anything like that, right? No, my

Lexi 1:08:22
with all my kids around, I don't get to listen as much as I would like, and my mom is always listening. She'll give me a little debriefs of some of the episodes. What's your mom's name? Veronica.

Scott Benner 1:08:35
Veronica. Hi. How are you? I appreciate you listening. Veronica. After you listen today, what are you planning on? Maybe some light lunch, going out with friends. Will you be calling Lexi to see how she's doing? That probably just freaked her out. That's awesome. Okay, that's awesome. Yeah, we can start talking to no, no, please. Are you kidding? More of that. All right. Hold on one second.

For me, the episode you just enjoyed was sponsored by the twist a ID system powered by tide pool. If you want a commercially available insulin pump with twist loop that offers unmatched personalization and precision for peace of mind, you want twist twist.com/juicebox, today's episode of The Juicebox Podcast is sponsored by the Dexcom g7 and the Dexcom g7 warms up in just 30 minutes. Check it out now at dexcom.com/juicebox Arden has been getting her diabetes supplies from us med for three years. You can as well us med.com/juice box, or call 888-721-1514, my thanks to us, med for sponsoring this episode and for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at Juicebox podcast.com to us, med and all of the sponsors you.

Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. My grand rounds series was designed by listeners to tell doctors what they need, and it also helps you to understand what to ask for. There's a mental wellness series that addresses the emotional side of diabetes and practical ways to stay balanced. And when we talk about GLP medications, well we'll break down what they are, how they may help you, and if they fit into your diabetes management plan. What do these three things have in common? They're all available at Juicebox, podcast.com, up in the menu. I know it can be hard to find these things in a podcast app, so we've collected them all for you@juiceboxpodcast.com the episode you just heard was professionally edited by wrong way recording, wrongway recording.com. You.

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#1520 Phantom Hemorrhoid

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

Padma was misdiagnosed with type 2 despite clear signs of type 1. Originally from India with a family history of diabetes, she fought dismissive doctors to get the right diagnosis—and her story, while sadly common, is still wild to hear.

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

Scott Benner 0:00
Hello friends, and welcome back to another episode of The Juicebox Podcast.

Padma 0:14
Hi, I'm Padma. I'm a 37 year old female. I was diagnosed about a year and a half ago, and I was 35

Scott Benner 0:22
please don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin when you place your first order for ag one, next gen, with my link, you'll also get a free bottle of A, G, d3, k2, a welcome kit and five of the upgraded travel packs. Use my link, drink AG, one.com/juicebox, 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 Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com if your loved one is newly diagnosed with type one diabetes and you're seeking a clear, practical perspective, check out the bold beginning series on the Juicebox Podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over 35 years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the Juicebox Podcast, the bold beginning series and all of the collections in the Juicebox Podcast are available in your audio app and@juiceboxpodcast.com in the menu. This episode of The Juicebox Podcast is sponsored by cozy earth I am wearing cozy Earth joggers right now. This morning, I dried off with cozy Earth towels right after I rolled out of bed on my cozy Earth sheets, and you're saying, sure you do, Scott, because they give them to you for free. Actually, I paid for a lot of that stuff. I did get some of it for free, but you're going to save 40% off of everything you buy at cozy earth.com when you use the offer code Juicebox at checkout, use Juicebox at checkout to save 40% off of your entire order. I'm having an on body vibe alert. This episode of The Juicebox Podcast is sponsored by ever since 365 the only one year where CGM, that's one insertion and one CGM a year, one CGM one year, not every 10 or 14 days ever since cgm.com/juicebox you Juicebox. This episode of The Juicebox Podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management. Imagine fewer worries about Miss boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses, learn more and get started today at Medtronic diabetes.com/juicebox

Padma 3:07
Hi, I'm Padma. I'm a 37 year old female from Western New York. I was diagnosed about a year and a half ago, and I was 35 first, just type two, like most adults, and after some lots of fighting, got a type one diagnosis.

Scott Benner 3:22
How did you know to fight?

Padma 3:23
Because I was super healthy before. I had no symptoms at all before, my blood work came back. A strong believer in preventative medicine, and I have had regular physicals for a long time. It's never been blood glucose fasting sugars have never been beyond 90 to 100 I hadn't seen my primary during COVID, so I just figured, hey, it's been a while, I should go do my regular checkup. And I did that, and I was feeling great. I had no symptoms at all, but my fasting blood sugar came back at 275

Scott Benner 3:54
okay, so you're thinking that not necessarily because, like, Hey, listen, I always take care of myself, and I'm in shape. I couldn't have type two. It's that you think you would have seen it creep up and come on, because you were, yeah, watching so closely

Padma 4:05
familiar with diabetes. I'm from India. We are sort of the diabetes capital of the world. Congratulations. I've had a lot of family members with diabetes. My family generally acts like this. It's been very different, not trace it back to my great grandfather. And all of us have different symptoms that never matched what I had read about type two diabetes. Okay, it was hard to explain before, because my grandfather got diabetes at the age of 78 and he was a very fit person. It was surprising to everybody. He was biking till he was 78 did very long hikes and all of that. And he ate very healthy. He believed in a ate a plant based diet, and none of it made sense, and his blood glucose would always be very high. I was in charge of his finger pricks when I was in high school. And. And fasting would be like 181 90, even, even though he was doing all of the things he was supposed to, it never made sense, yeah? And when I got it, it was a different perspective. I was like, Oh, I feel it now. It's not normal,

Scott Benner 5:15
yeah, I have in your notes here, so not just a familial history, but like four generations of people, is that right? Yeah, okay,

Speaker 1 5:23
that's as far as we know. That's as far, yeah, right. Could be farther, right? Yeah. Can

Scott Benner 5:27
I ask you a question that that I'm just gonna kill myself if I don't ask? When I see Indian families walking, why do they hold their hands behind their back? Why is that so, like, classic, I don't know. You don't know. Padma, I finally get somebody I can ask, and you're like, I don't know.

Padma 5:41
I didn't know that was a thing at all, until you're just friends. Oh my god. I

Scott Benner 5:45
live somewhere where there's a fairly big Indian population, and a lot of older couples walk like in the late evenings, but the gentlemen always hold their hands behind their back when they

Padma 5:55
walk. I know a lot of Indians in my family. None of us. I haven't noticed that. It's like a, it's like a school headmaster kind of thing, I guess, very

Scott Benner 6:03
much like that. Yeah, and I don't ever have the nerve to ask my daughter's friends, because I'm like, I don't want to be the guy who's like, Hey, how come that's happening? But I thought, Oh, she'll be able to tell me. All right, my second thing, oh, God, I thought you're gonna be able to help me with these things. The second thing I wanted you to help me with is, Should I take my wife away for the weekend up in Western New York and like, rent, like a little cabin or something. Is that a good idea? It's

Padma 6:23
like, super cold this weekend, don't we didn't get any of the snow that the other people keep harping about. But, you know, we're just pissed because our grocery supplies didn't come so the shelves are empty. But it's been, like, super cold,

Scott Benner 6:38
too cold. Okay, all right, I'll wait till it's a little warmer. I just thought, like, you know, a place where we could light a fire and hang out for like, a night or something like that. But, all right, so there is a line where I don't want to be there. What do you mean for temperature? There's a temperature line where I just don't want to be there.

Speaker 1 6:54
Yeah, yeah. Okay. Like, I don't want to be here right now. Okay, all

Scott Benner 6:58
right, fair enough. Then I won't visit a place where the where the locals are trying to get out of anyway? What made you want to come on the

Padma 7:05
show? My diagnosis was mostly from podcasts. I discovered your podcast much later, and it was great place of information for me. Don't have much else and interesting going on. Nobody else is inviting me to podcast. So

Scott Benner 7:19
this is your chance. Finally, I've got a reason to get on a podcast. On the podcast. All right, so let's sort of go through it. So you do the whole thing, go to the doctor. You're like, hey, maybe it's time to go back. Next thing, you know, they say you have type two diabetes. And do you know immediately? Oh, no, no, no. Or do you start down that road with them? Oh,

Padma 7:37
here's the funny thing, they didn't say anything to me. So I'm a very active person. I'm a field engineer. So my work involves some field work. And this was all in 2023 I train for a bike ride every I do a bike ride every year, from New York City to Niagara Falls. It's a seven day bike ride. And that in 2023 I was like, Okay, I'm gonna do this well this year. So I started training. I was feeling great. I had no symptoms of anything other than that. I was biking much better than I was before, and I was slowly starting to lose weight. I thought, Oh, finally, my biking and all my healthy eating is finally working. The day I went for my physical was the day after a 60 mile, the weekend after it was a Monday, and the Saturday, I had rode 60 miles. I felt great, and I had lost about 15 to 20 pounds since the summer. And the appointment went great. The doctor was happy with everything. I had developed some my butt was really bad because I thought it was because of the biking. Okay, thought it was hemorrhoids. I was doing all the home treatments for it, and I talked to him about it, and he just said, oh yeah. He no exam or anything. He just said, Yeah, whatever you're doing from the internet is fine.

Scott Benner 8:53
So you're like, I called up and said, Hey, my butt is bad. I think it's hemorrhoids. And you're and I went on the internet. He's like, Yeah, that's good. Keep doing that. Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system. The mini med 780 G automated insulin delivery system, anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that. Learn more about how. You can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox Spring is here. It is a time of renewal. You want to wake up every morning and go get it, you know what I mean. But how you going to do that when your sheets suck and you know they do, you know they're thin in some places, or they're too slippery and silky, or you're too hot in them, or whatever, and that wouldn't happen to you if you were sleeping on the same sheets that I am, sheets that I got from cozy earth.com I know this sounds like a sales pitch, and in fairness, it is, but these sheets are the best that I've ever slept on. They make every day better, every sleep better the lady next to me, she gets hot. This sheets help her stay cool. I am freezing cold because of the giant fan the lady puts on me, but under my cozy Earth sheets, I'm neither too hot nor too cold. Now you're out of bed and you say, Ooh, what's gonna happen next? Scott? Well, you're gonna get a shower and dry off with some beautiful towels. Then you're gonna put on my cozy Earth joggers or a sweatshirt, or any of the awesome clothing that they sell. It's even possible that you took off your cozy Earth pajamas. When you got off of your cozy Earth sheets, you're on the floor ready for the day. You go to the bathroom a wash, wash, wash, and then you tap yourself down, you get all your bits and your bingos and everything nice and dry, and you slip on some comfortable clothing, and you go about your day feeling good and looking good. Save 40% at cozy earth.com and use the offer code Juicebox at checkout. When you think of a CGM and all the good that it brings in your life, is the first thing you think about. I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a doorframe, sometimes it gets ripped off. I love that the adhesive kind of gets mushy. Sometimes when I sweat and falls off. No, these are not the things that you love about a CGM. Today's episode of The Juicebox Podcast is sponsored by the ever since 365 the only CGM that you only have to put on once a year, and the only CGM that won't give you any of those problems. The Eversense 365 is the only one year CGM designed to minimize device frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping, you can manage your diabetes instead of your CGM with the Eversense 365 learn more and get started today. At ever since cgm.com/juicebox, one year one CGM,

Padma 12:29
yeah, like this that not even, like, a prescription, temp medication or anything. And I said, like, Well, I've been biking for a long time. I've been doing all of these. Haven't changed much. Why is this happening? Like, Oh, you've never been 35 years old before either, as always happens, this all happens. And like, Okay. And then he just said, Don't bike for two weeks and you'll be fine. I was like, Well, I have a big ride next month. I'm training for it. I kind of need to be training. It's like, if you want to do that, right, don't bike. I was like, Okay, that makes sense. And I went away. He ordered my blood work. I did my blood work. I wasn't expecting anything the day off the blood work, I did feel after giving blood and having breakfast, I went off to work. I felt a little bit dizzy. I thought it was because they took too much blood for me, and I ate a little bit, and then I was fine. I worked outside the whole day. We were having air quality issues at the time too, so I just chalk things up to that. And this was all just before the Fourth of July weekend, and because we were not because I was told not to bike, my husband and I decided to go on a hiking trip in the Adirondacks, right? So the fourth was on a Tuesday at that time, so Monday the lab results came in. And that was the day I was doing a big hike. We were going to scale Algonquin, which is, like, the second highest peak. Wow. In the morning, while I was getting ready, the email came, I got my questions alert saying my result was available. I looked at it was 275 I've like, I've seen high blood sugars before. I've never seen that high even my grandfather, yeah, like that didn't make sense at all. And then I went off on the hike. I did not tell my husband. Why not? I was too spooked. I was too shocked. I think it was in shock. We had a good breakfast, eggs and everything. I was like reeling. And then we went off into the mountains, no internet or anything, just, you know, me and my happy thoughts, just freaking out on my own, and I climbed up. The first hour or so was a little hard, but after that it got very easy. I was climbing up and like, heading way faster than my husband, and he was trying to catch up. As I am super fit, there's no way I have diabetes. I don't feel like any of the things that I'm supposed to and then the next day was a holiday, didn't expect them to call back. So I expected a call back on Wednesday, when the doctor's office is back, right? I got nothing. I got nothing the whole week, really. So I said, Okay, maybe the internet is just wrong. Maybe I'm fine, and maybe they see this all the time. They finally called me back the following Monday, and the. Nurse called, and I saw the number, answered it, and she goes like, Hey, you have diabetes. She

Scott Benner 15:05
didn't say, good news, it's not hemorrhoids, because that's how I would have done it. But

Unknown Speaker 15:11
I'm like, no kidding.

Scott Benner 15:13
How long have you been married? At least 20 years, 10 years old. How old are How long have you been married? Because I loved you were like, listen, we had a good breakfast. I didn't want to bring

Padma 15:26
it up. We were married three years. Oh, no.

Scott Benner 15:28
Oh, a newer wedding. I say. I say, you're like, listen, we had a nice breakfast.

Padma 15:32
I don't know, since 2017 or so. We had, like, a COVID wedding. Oh, okay. I

Scott Benner 15:36
felt like you were married forever, because you're like, I knew this news was going to ruin the day. So I just thought I felt, I found myself feeling bad for you, Pat. I'm thinking about you out climbing, but really just thinking about, like, your health the whole time, because that's what was happening, right?

Padma 15:50
Oh yeah, totally. And it was, it was a super hard climb, and like I said, there were air quality issues. So my husband was struggling too, and he was carrying up like a 10 pound camera with him. So on the way back down, I had already fallen a couple of times in the summer doing all my activities, and my knees were bad, so it was like, super hard coming down, and my husband wasn't raining long enough for me, so I was yelling at him. He had no idea that I had all these other things going on in my head. I was like, I was sure he was gonna leave me just

Scott Benner 16:21
keep climbing and leave you on the hill. Like, that's enough for her, yeah, oh, yeah. And I just made me feel it made me feel for you, like, thinking about all the stuff going through your head while you were out there. Oh, this all

Padma 16:32
went on for the next three months. So Whoa, no, but,

Scott Benner 16:38
but the doctor's office calls and says, you have diabetes. But then, oh, I

Padma 16:41
they were like, Oh, that you have diabetes, as though I was hiding it from them and left it for them to find out or something. Well, you've known me for like, eight years. You've been my primary care physician. And she says the doctor wants to see you right away. They go care. He has an opening in three weeks. Did you

Scott Benner 16:57
say I don't think the doctor understands what right away means. But okay, exactly. I was

Padma 17:01
like, No. I talked to the doctor about my bike ride. That's next week now, and I need that's in two weeks now. I want to be seen before that. So he says, Oh, you still have to do your blood work again. You need you to do that. Get that book. We'll see you next Thursday. So that's the day I went and told my husband, the day of the blood work, no, the day the doctor's office called, because I was it was like a week since I found out, so I thought maybe it was just a false positive, or these things just happen and it's not that big a deal, and when they called it, it finally felt real, right? So I made the appointment for blood work later in the week, and went home and told my husband we were both freaking out separately, doing a lot of research. In case I didn't mention I'm an engineer, super nerd. My husband is a computer scientist, nerdier than me. Both of us went all into research mode, and we're freaking out separately, on our own, all over the place, and I was in a very busy part of my work. We were working towards a Grant deadline, or multiple grand deadlines. So I was just pouring myself into work, and anytime I had a free moment, like in the bathroom, I was just researching diabetes and reading all about it. None of it brought anything much about type one diabetes. I've known diabetes for a long time, but nobody I knew had diabetes were ever classified as type one or type two. It was just diabetes. Okay.

Scott Benner 18:22
Did you find the research helpful in that early going?

Padma 18:27
Sort of most of the information online was only about type two diabetes, unless you search for it, most of it just mentions lots of things about diabetes, type two and, oh, there's type one too. There's mostly nothing you can do about it when you do a general search like that, right? So first, I didn't want type one because it definitely sounded horrible, but type two didn't. I couldn't believe that I was having it. Because I, like I said, there are lots of family members with diabetes, some of them were diagnosed at my age, but my grandfather, from whom we all got it, got it only at 78 so we thought it was just because he was very fit and stayed on a healthy diet. So if we did those things, we could also stave it off longer. Was my idea. That's why I was very active and focused on my food and focused on getting regular checkups and things like that. Yeah.

Scott Benner 19:18
So you thought there was this. It happens in our family all the time, but this one person, the active one, the fit one, he made it into his late 70s. We all just kind of mimic that.

Padma 19:29
Yeah, yeah. So like, even if I stay fit, I felt like I was going to get it, because, you know, our genes are stronger than all the workouts. He was fit, but he even he got it at 78 so we, we're all just going to get it, but if we stayed fit, I could still lead a normal life. Is my idea growing up. But when it actually happened, it was like a whole nother thing. I felt like I was prepared for it, but I was not at

Scott Benner 19:52
all. Yeah, so talk about how it hit you, like psychologically. Then

Padma 19:56
it was a very odd feeling, because I've seen other. People, I've heard, judgment just creeps in immediately. When you say you're diabetic, oh, he's not eating right, or they're not following any they're not being healthy and all of that, it makes you feel like it's your fault for getting it.

Scott Benner 20:12
Yeah. And then does that keep you closed off from other people you don't talk about it? Does that start the kind of like that cycle where it's not a thing you talk about with other people, so you hold it inside, and then that kind of doubles on itself. Yeah,

Padma 20:25
I didn't agree with the doctors right away, so speaking to others was the hardest thing for me, because they'd ask questions, and I didn't have answers to that. And I'm, I'm not used to that. I've usually known what happens to me, or I'm, I'm big on solving problems. I'm very good at those things. I didn't believe in the answers that I was getting from my doctor, so I couldn't have a conversation, and people were starting to get concerned because I kept losing weight. So I've never cared that much about my weight. I'm five four, and I was about 170 pounds in May 165 to 170 so I didn't pay a lot of attention to it, because I was still active. Weight was not a big issue to me. But, you know, I would, I would have always liked to be very thin, but didn't care that much about it. Yeah.

Scott Benner 21:09
So it wasn't a thing you had to think about or thought about much. But then as you started losing weight, it became obvious to recite,

Padma 21:14
I did track it. So one of the things was, in May, we went on a hiking trip to the Smoky Mountains. I was incredibly thirsty during that trip. I was also eating a lot of, you know, Southern food, heavy breakfasts and things like that. I just thought, you know, I'm from Western New York. I'm going south, and it's making me thirsty. I completely ignored that. My husband was also from here, and he was not as thirsty as me. That

Scott Benner 21:37
wouldn't help the overall conversation you were having in your head,

Padma 21:41
yeah. So at that time, there was no conversation, so I was eating a lot. I, you know, it was a vacation, so, and I did fall on the third day of the hike, I would go up, I would climb to the top of the hill. I would be fine, but then I would be just so exhausted I take a nap at the top, really, coming down on the third day I fell. And I fall a lot. I'm clumsy person, but that fall felt weird because there was nothing to trip me. We were coming down. It was flat, it was not a slope or anything, and I just fell hard and skinned my knee, my tore my pants and everything. It was a hard fall.

Scott Benner 22:14
I think we could call this episode clumsy hiker, if you want to, by the way, find another hobby. If you're falling down hills all the time.

Padma 22:22
I have a lot of hobbies. Okay, sometimes

Scott Benner 22:26
people say I'm very active, but then they go on to describe, like, a, you know, a moderately active lifestyle. You're very active. Yeah, there's no doubt. Yeah, absolutely. Hey, was there any judgment from people because of your cultural background. Like, did people look at you and go, Oh, it's the food. This happens to those people all the time. Like, were you getting that from people? I

Padma 22:47
think it was mostly from my doctors. Okay, so after my blood work came, I scheduled the blood work again. My ANC came back at 12.30 gosh. So that felt really bad. So the day I went into the blood work, did the blood work again, I did the blood work and went to CVS or Walgreens and picked up one of the finger prick kits. It all brought back a lot of memories, because I was in charge of my grandfather's finger prick. So I knew the Old finger prick things with where you know, you put a giant glob of blood, and then it has too much blood or too little blood after like a 22nd thing. So all of those things were flashing in my head. I picked it up, came home and realized that they don't come with the test strips. I had fight by those separately, and the day I got the results is when I finally had time to get this test strips. Also it was 12.3 and my fasting blood sugar and that day was like 280 even higher than the first one I come home and, like, try to test it, like I'm putting, like a giant glob of blood all over it. It was like my husband walked in and was a blood bath in the dining table. He still calls that thing my vampire. I'm

Scott Benner 23:55
laughing still, because I'm imagining you at the store really having terrible memories about your grandfather, probably feeling like, I can't believe this has happened to me, that you get home and open that box and you're probably like, god damn it, there's no test strips in this

Padma 24:10
box. Yeah. So when my grandfather had it finger prick, things were a whole new thing in India, nobody knew about it. My aunt, my grandfather's daughter, got it at the same age as me. Okay? So when her father got it, she brought us all the technology. She had finger prick kits and all of that. Our doctors did not know that our kit was from the US, and we had to wait for strips. We couldn't buy those locally in India.

Speaker 1 24:35
When did you come here? How old were you? I was 21 I came here in 2009 do you get home every year? Yeah, I'm actually going next week.

Scott Benner 24:44
I friends who go back every year, so I know it to be like a thing that they do very kind of religiously. How long do you go

Unknown Speaker 24:51
back for? I'm just going for two weeks. Is

Scott Benner 24:54
it culture shock for you? Have you been here long enough now that when you get back you're shocked by it? Or. You're not, Not particularly, no, I think it's because the people I know are through my daughter. So there's, they're kind of second generation here, yeah, and the kids, it's interesting, because they grew up here, and they go, they go back to India, and they're like, it's sometimes they come back and they look a little stunned for a while. So you go back visit with family a couple of weeks. Are you now the person who brings back diabetes supplies?

Padma 25:21
Well, sort of, yeah, I'm trying to get some of them to use continuous glucose monitors, and it's not worked out. Well, the apps don't are not compatible in India

Scott Benner 25:30
and things, yeah, you can't bring them from America to there and just expect them to work kids and

Padma 25:35
everything is better there. Now it's easier to get strips if you buy a machine there than from here. But back then, it was just not there. Like we would have blood camps where they test for diabetes, and we'll go in there and they just have these fingerprint kits.

Scott Benner 25:48
Does that break your heart a little bit because you want them to use the CGM, right?

Padma 25:52
Yeah, yeah, oh, yeah, oh, I'm not done with my whole diagnosis. Sorry, sorry, but I won't pivot. You go ahead. I go to the doctor's office with my husband again, and they're like, oh yeah, this is normal, just genetic. It's not your fault. That first meeting was actually very comforting, at least for my husband and I kept asking about all the different things. Like, you know, had a lot of questions like, Why is this happening? And I thought, you know, type two was insulin resistance, and all my I'm also a kickboxer, all of my training I thought was supposed to help with insulin resistance, why it's happening. And my doctor didn't have any good answers. But he was very comforting. I asked him if the meter was actually right. When we had the meter, after my husband called it the vampire, when we finally figured it out and tested it, I was at 460

Scott Benner 26:37
oh gosh, yeah, it was. It was really progressing quickly. Oh yeah, I

Padma 26:41
was at 460 and I hadn't eaten. It was like, three or four hours after lunch, so I knew that was very high. I thought the machine was broken. Tested, made my husband test, and he was at 90. Immediately mad at him. I tested again, and I was still at 460 but I was still starving because I hadn't eaten in four hours. So I went ahead and ate, and we discussed if we should go to the ER, I was like, Oh, what are they going to do? Just give me insulin. There's also all this fear about insulin. There's so many myths that sort of makes, makes you, at least in my culture, or in India, it was like, if you're on insulin, you're a bad diabetic

Scott Benner 27:20
kind of thing, yeah? So insulin is failure in your mind?

Padma 27:24
Yeah, it's sort of, it's sort of fear they I've heard things like, Oh no, if the diabetic is mad, like my aunt or my we are generally short tempered people with very little patience, but they would just blame it on the diabetes, right? Oh, maybe his, their sugar is high today, or maybe it's the insulin that's making them like this.

Scott Benner 27:44
How many generations has your family been covering for being dicks with their diabetes? Generally

Padma 27:49
not the nicest you know, my grandfather was feared way before he had diabetes,

Scott Benner 27:57
and later they just covered it up. They're like, that's that's his diabetes. Don't worry. I don't

Padma 28:00
think they cared. They were like, Okay, fine. Blame it on the diabetes. If not, I'd be an angel. I guess that's

Scott Benner 28:07
funny. Oh my gosh. So what did you do? Did you go to the hospital? No,

Padma 28:11
we didn't. So like, well, if my ANC is 12.3 it seems like I've been like this for a long time, maybe it's fine because the doctor's office didn't seem to care that much. Do

Scott Benner 28:20
you not know enough about the numbers at that point to know that that's crazy? Or were you talking yourself out of it at that point, like I

Padma 28:27
said, our numbers for my grandfather was always high. Even when he was on insulin, he dropped a lot. We didn't understand type one or any of that we just went by, you know, whatever the doctor told us to give him for insulin shots like, you know, once a month. They didn't do a one CS back in 2000 in India. They just did fasting and postprandial, okay? And based on that, the doctor would give us a number for the insulin, and that's what he would take if he dropped. He dropped low a lot. It was harder to manage. So when he was in the two hundreds, he was fine. So we just let him be I see. So we thought that was fine. So it's my dad. My father has type two, and it's very hard to get him to be compliant, because fizzy is a number of 200 regularly. It's

Scott Benner 29:12
like, that seems fine because that's what he saw with his father. Yeah. So it's

Padma 29:15
hard for us to wrap around that type regular, type two is different, yeah.

Scott Benner 29:20
And you're in the same boat then, because you've now seen it for a couple

Padma 29:23
I mean, the doctor's office didn't seem to care. Any other story I read was like, Oh, they rushed people right to the bus right to the emergency room or things like that.

Scott Benner 29:33
Okay, so you just figured you were on the family plan at that point. And yeah. So,

Padma 29:37
I mean, we were spooked. We just didn't know what to do. Okay? And we went to bed very scared, because I was I still tested about an hour and a half after dinner, and I was at 560

Scott Benner 29:49
jeez, were you have to be in dk by then, right? I don't

Padma 29:54
think I ever went to DK. So here's the thing. The next day, I went to the hot doctor and told him all this, and you. Like, Oh, that's fine. Say, Hey, I'm this high. Could I be type one? Because, you know, I didn't want to be type one, but I wanted to cross that off. And he was like, No way.

Scott Benner 30:09
Wow, that's a general practitioner still. Is that right? Yeah, okay, right.

Padma 30:14
Now I don't even trust that he went to med school. He's not my doctor anymore, like I'm an engineer. I know way more about medicine now than he ever helped me. I mean,

Scott Benner 30:25
I'm am fascinated that you told a doctor your blood sugar was 560 Yeah.

Padma 30:30
I was like, hey, is this meter right? I went to 560 Am I okay? Like, I've never seen that higher number before. I didn't know the meters could read beyond 500 and he was like, Oh no, that's accurate. But don't you know this is normal a diagnosis. Lots of people lose weight, so I had only seen him three weeks before, and I had lost eight pounds in that three weeks. Wow. They didn't even bring that up. And the nurse was like, oh yeah, we see this all the time. So it just made me feel like it's my fault. It's like, you know, I got diabetes, and, yeah, I'm

Scott Benner 31:02
fascinated though that 560 losing that much weight, and you said the words type one diabetes to him,

Padma 31:10
yeah, so when I asked about it, he just joked, like, you know, you'd be much higher if you were type one, and you're too old for that.

Scott Benner 31:18
Oh, God. So every misunderstanding was there,

Padma 31:21
huh? Like I said, internet's given me way more than this doctor, so I don't think he's a doctor. And then he's like, I'm gonna start you on Metformin and statins and lisno, prel and all of that, along with my high blood sugars. For the first time ever, my cholesterol was off too. The good cholesterol was, uh, was everything was borderline, not very high. The whole metabolic panel was kind of weird. And my hemoglobin was high. I think my sugars were just that high, or I was close to DKA that it threw all of my numbers off. So he started me on the regular things, and when I pestered about type one, he said, Okay, we'll test again in three months, and I'll add the C peptide test that'll tell you if you're making insulin or not three

Scott Benner 32:05
months. Wouldn't you be dead in three months?

Padma 32:08
Oh, it gets worse. Oh, go ahead. So he did refer to me an endocrinologist, and I said, Well, I'm going on this bike ride next week. Is that okay? And he said, Oh, no, you'll be fine. It's like, How often should I test with this? He said, Just test every morning. Don't go crazy about it. I'm going to refer you to an endocrinologist, because that's good practice, but I'm pretty confident he's going to send you back over to me and agree with my decisions. Oh, and I'll just see you every three months. We're going to manage this together. It's all going to be fine. Ask me, send me questions on the portal anytime, and all of that, right? I said, okay, and I left on the bike ride. It's a seven day ride. Every day we ride like 6200 miles. There's

Scott Benner 32:48
no way you got that done. I can't wait to hear what happened. What day did you die on the bike ride? I did not die the first

Padma 32:55
day I did 61st. Day is the shortest ride I did 66 miles. And this is all for a cancer benefit. There are some survivors who ride it, and we are very well supported. Yeah, I got to, like, 50 miles, and this is in the summer, so it was like a 90 degree day. I was sweating. I need I knew I needed electrolytes. I knew I needed food, but I couldn't bring myself to eat anything, or like everything has carbs, and I just froze every time I got to a rest stop. I was drinking a lot of water, but I knew I needed electrolytes, and everything has carbs in it. I just couldn't bring yourself to myself to eat anything, and I knew I couldn't go on for long without fuel. So I got to, like, 50 miles, and I wanted to test but I forgot to grab my finger kit the vampire, I asked the medics, and they didn't have it too so, but we came up with a plan, and looked at all the car ratings, and they helped me get some electrolytes, very low carb ones. And I decided I'll just stop at 50 miles. If we can't ride, we can get a boost right to the camp. So I did that. I went over to camp, grab my kit and test it right away. I was at 270

Scott Benner 34:03
Oh, yeah, but you were still feeling that badly. No, it

Padma 34:07
was also 90 degree weather. I was it was just regular hot. Oh, okay, okay, biking in the heat and all of that. But I was at 270 after a 50 mile bike ride. Yeah, right. And almost no food.

Scott Benner 34:20
Exactly when was the last time you ate? Do you think I had breakfast, which

Padma 34:24
was mostly eggs and maybe some potatoes? I ate some fruit and things on the rest stops, but 50 miles should have burned it. I was at 270 and I was like starving so, but when the food came out, I lost all appetite. I couldn't eat anything at all.

Scott Benner 34:40
When's the next time you tested in this on that day, I tested when

Padma 34:44
I got to camp, and then I didn't test again. I think it was the Metformin that was causing my appetite loss, and I didn't know at that time. They didn't tell me that all that will happen. Okay, so the next morning, I was still at 360 I barely ate anything. Everybody around me was eating, like three plate fulls, and I just. There staring at one plate, and barely got half of it down. I had to force myself to eat. And the next morning, I was, like, close to 300 at fasting. So I ate some eggs, didn't have any carbs, and got on the bike again. I rode like, 30 miles. I was concerned. I tested and I was down to 190 did you start

Scott Benner 35:18
thinking like this is going to be okay? Or did you start thinking I can't possibly go on like this?

Padma 35:23
I knew I couldn't possibly go on without eating properly, but I felt great while biking, you know? Oh, really, I wasn't tired much at all.

Scott Benner 35:30
Like, for a person who's in so much trouble, I'm doing terrific, I know,

Padma 35:35
so so torn and I had lost all this weight, so biking was really good.

Scott Benner 35:42
There's enough mixed message in what's happening to you that it's still easy to ignore the other stuff, I think I'm following. I appreciate you telling it like this too, because you're basically just drilling down on this one aspect of the diagnosis that I find really interesting, like the psychological game that goes on between you and yourself. You know what I mean, while you're trying to come to grips with everything,

Padma 36:05
yeah, and I'm reading everything I can find about type two diabetes, because at that time, they decidedly told me I was type two and I wasn't seeing any of it. Metformin is supposed to help right away. It's so great. It has so little effect for other people. So it didn't even cross my mind that it could be the Metformin was having issues, like bowel issues and things like that. That was all caused by the Metformin. But I didn't realize it. I thought it was still the hemorrhoids or something like that. It wasn't difficult to bite with hemorrhoids. Would be hard to

Scott Benner 36:36
sit on a bike, by the way. Did you actually have hemorrhoids? Or was that just the thing you made up? I thought

Padma 36:40
it was hemorrhoids. I don't know anymore, I decided I'll just stop testing anymore, because none of it was making sense to me. But and I also had a lot of work. I was working remotely my office also, because we had all these deadlines so and cut my right shot every day. Instead of fighting like 80 to 100 miles, I was only riding like 50 miles, okay, and working from camp, because I didn't want to be, like, just obsessed with diabetes the whole time, because it wasn't helping. None of the things that I was reading and my readings were matching at all. So I just went about what I was doing before, like eating normally or trying to eat normally. But I wasn't eating much. I was also taking stool softeners because I thought it was still the hemorrhoids, and I didn't want it to come back. At the end of the seven days, the whole week, I probably rode like 300 miles instead of the 500 miles I was supposed to ride. I got back and I had a deadline, like in two days, I decided I won't test until then, I just kept on working in the week. My husband was freaking out on his own because I wasn't a great communicator, and he had researched and loaded up on, like, healthy foods and salad recipes and things like that. He was taking care of feeding me, and every time he made the food, I was just upset and made me cry that I had to eat like that. Now this is my life, and I just focused on work completely. I worked for like three days after the ride. And when I was finally done with the deadline, I slept for like 14 hours straight. And the next morning, I started testing again because my endo appointment was in 10 days, and I wanted data for that. I was at like 300 after the ride. I was not able to do any workouts. I was just starting to feel sicker and sicker. I didn't realize that the Metformin was doing that to me, and every day, my numbers were over 300 fasting numbers, and I was barely eating. We tried the plate method. My husband would look at the plate, he would try to eat as much as me, and it's like, this is like pigeon food. It's not enough for me, and I wouldn't be able to complete that plate. It would take me, like, an hour to like stuff, the food in my face, and I was still losing like two to four pounds a week. Sure,

Scott Benner 38:45
you're not eating at all, and you have higher and

Padma 38:47
higher my fasting numbers were like, 400 right? You have, you have type

Scott Benner 38:51
one diabetes without insulin, and you're not eating. On top of that, like you were on your way, you were heading out,

Padma 38:59
people were starting to notice. First it was like, Oh, you look great. And they're like, are you okay?

Scott Benner 39:03
Right now, they probably thought they were riding that bike ride for you,

Padma 39:07
seriously? And there everybody was concerned. I had cancer, because, you know, that's a bigger fear. And when I said diabetes, like, Oh, we don't know anything about that, but are you sure? Because you seem great, you seem to be biking really well this year. It's interesting.

Scott Benner 39:21
Yeah, it's all the mixed messaging. It just and you this is a three month path right from the from the beginning,

Padma 39:28
give it. Give or take. Okay, it was very weird. So after that, the endo appointment finally came around, and I had all of this data. I was had notes of everything that I had eaten on my phone. I made a table so it's easier to show the doctor. I went and it was a 40 minute appointment, which was useless, that endo should not be an endo. He looked at my numbers. I showed him the phone app for notes app, saying, Hey, these are my readings. And this is what I've eaten. This is the workout I was I was just able to do some yoga every morning because I didn't have energy. Or anything else. There's all this news about, you know, exercise can make it worse. If you work out too much, your numbers could go higher. It was just blaming everything I was doing and every, every life choice up to that point, I saw it all to the Endo, and he gave me the a log book, a paper thing, and he just threw it at me and said, Hey, you can use this to log. He didn't like

Scott Benner 40:17
your notes app. Where

Padma 40:18
I log with is not the point. I have this log now. Can you take a look at it? And he was like, Oh, you need insulin. And I described this bike ride to him, and I like, well, I don't want insulin. I'm scared it can cause a lot of lows, and I'm not comfortable with it. And he was like, well, but your numbers are high. You're not doing the right things. And I said, Well, if it's type two, if you're sure it's type two, I should be able to handle it with diet and exercise, right? And he looked at me and like, Yeah, but these meds should help with type two. And he was like, Yeah, well, they want help on their own, though, but you need to focus on your diet and exercise too. This has been my diet and exercise for the last week and for most of my life. Yeah, if I have to do more diet and exercise to stay alive, it's not happening. How is

Scott Benner 41:03
that possible? Right? I mean, you are the most active person I think I've ever heard from. So, like, that's, oh, that must have been incredibly frustrating

Padma 41:12
in all of this. None of them mentioned continuous glucose monitors at that point. I did not know those existed. Okay? My fear around insulin was, I didn't know how to dose, like I didn't understand the math that we were told from my grandfather, take this much once a month, or once in three months, the doctor would tell us what dose to give him, and we just gave him that I see, and I still thought that was the way things were done, because, you know, I just didn't know at that time, and my doctors were not giving me that. So you were

Scott Benner 41:40
scared of insulin for all the reasons that we've covered but over and above, because the last time you were involved with insulin was back in India, with a with a type two grandfather who they would just do a fasting fasting and then give you a number, and then he'd get low all the time, yeah, yeah. No, it's got to be frightening. I

Padma 41:57
said, I don't want insulin. And he said, Well, we can put you on trulicity or xampp, those should help with type two. And I said, I don't want injections or insulin. I thought those were all the same. And he said, No, but Trulicity is not the same as insulin, but this will help. So he added trulicity, and I explained to him my bowel issues and digestive issues, and I said, he asked me about it, and I said, Well, I'm also on stool softener, so I think that's what's causing my bowel issues. And he looked at me weird and said, Oh, you don't need to do that. Metformin will give you Bolus issues on its own.

Scott Benner 42:28
He thought, Oh, that's lovely. No one told me that. Oh, nobody told me about

Padma 42:32
it. And then he went on to double my Metformin dose.

Scott Benner 42:35
I'll get you going. Don't worry.

Padma 42:39
He said, Star trulicity, and showed me how to do it and all that, and sent me home. I explained the bike ride and stuff, and he said, you probably shouldn't do those things with your condition, is what he said,

Scott Benner 42:50
Oh, now you don't get to do all the things you love. It's

Speaker 1 42:53
like, yeah. It's like, well, what's the point of living Yeah, I understand. I

Padma 42:59
went back home, I called one of my cousins, who was diagnosed around the same time as I was, and he was also very active. So I thought he would have figured out the answers, but it did depress me more because he told me the same thing. Say, I'm sorry you have it, but this is I haven't figured out a natural way to cure any of this. This is how we are, and everything you do will spike your numbers. And he was not in control at all, and it depressed me even more, and I refused to accept that. But I went home all this time. I was trying so many things, not eating the salads, and things were not working, so I wanted to go back to my regular food, and my husband thought I was being non compliant. I was just being,

Scott Benner 43:38
oh gosh, it starts impacting everything. Yeah, like I said, I'm not great at communicating now, you seem like you have a little bit of your grandfather maybe

Padma 43:48
going on. So I also asked as the endo about type one, and he said, Well, we can add a gad 65 test when you come back in three months. I asked him what it was, and he said, it's not an antibody test that'll tell whether you have type one or not, but I don't think you're type one. So I went back and I started reading more and more about type one. I read some misdiagnosis stories. I just went back to taking all of these meds, and I was just feeling worse and worse. I kept dropping more and more weight, and it was a very confusing period, and the more I read about type one, eventually, once I found the right prompt words and got type one information, I felt stronger that I did have type one, and I read about continuous glucose monitors and everything else. And it didn't seem as daunting, but I could not convince my doctors for anything. First, they prescribed real estate, and it made me even worse. The Metformin was making me worse, so after a month, I decided to go ahead and do the test that I was prescribed that was supposed to do in three months. I did that, and my gad 65 came back positive, but my C peptide was 1.8 it wasn't low enough, but the GAD 65 meant that I had out on. Antibodies. By then, I had read about T yield and everything else, and I wanted the other antibody tests. Contacted the endo on the portal, and he came back and said, like, well, you could still be type two. And then I had asked, like a child. I asked, like, what does my Gat 65 test mean? What does my C peptide test me said, Get 65 means you might have antibodies, but because you have high enough C peptide, you're not insulin, you're still making some insulin. Okay. I was like, Can I get the other tests? Yeah, right, other insulin antibody tests. And he said, Oh, we can add that in when you come back in three months, if you're interested in something like T Z. I was already passed that for tz, like, this is definitely stage three. If it's type one, I don't qualify for it. I knew that, and the doctor didn't. I was giving up on that Endo, and then I found out that that endo was not in my network, so we had to pay for him.

Speaker 1 45:53
Oh, awesome, bonus. Oh yeah, I

Padma 45:57
did the test early because I was still hoping that it was not type one, yeah, in the off chance that it was not type one, I was supposed to go to a higher dose of trilicity in four weeks. I didn't want to delay that or cancel that. It was like a whole pile of things. And I and then I told him I stopped Metformin because it's making me sicker. And he just said, Oh, just go back to your old dosage if it's making you sicker. And I like Gil supplied or guilty guilty sight or whatever. I tried even that for a few days, and it all just made me worse. So I went back to my primary care and said, Hey, can you just give me a different Endo? And he responded and said, Oh, you find anybody you want, and he'll give you a referral. Looked up a research facility near my house and looked into the research for all the doctors. And there was one university group had a lot of researchers that were that had both type one and type two, and I asked for one of those doctors, and he gave me a referral to them, but they didn't have an appointment for the next six weeks.

Scott Benner 46:53
People are really trying to kill you. Oh, yeah. First of all, as you're now, like, you know, you're stepping through this time period once you're in that office with the with the endocrinologist, and talking about gad 65 you are clearly educating yourself quickly. Oh yeah, right, because you're now talking more like a physician than the doctor is. Oh yeah. Or, you know, I guess the way you would

Padma 47:13
expect, the endo told me about gad 65 and then I researched more, and by the time I did that test, I knew there were other antibodies. And I had read about, you know, the hangry woman's podcast was one of the first I heard she was on TCO yd. And then I started hearing more and more about, pretty much finished all the TCO yd episodes. And then I became this crazy person who's on the internet, posts my symptoms on everything. My primary care had given me a couple of books to read, which was just garbage, which pretty much said the only cure to type two diabetes is bariatric surgery, and nothing else will work, and things like that. It was a whole roller coaster for a few months. And at some point I did start sharing properly with my husband. He saw that I was doing, I was experimenting very fast, and I had to tell him that, you know, I've been where you are, seeing nothing working for my grandfather or my aunt or uncle. I know how you feel, but I don't have time to explain things to you, because I'm just learning so much, and it's an overload. And he started following what I was doing. He was he would see I would making better choices for lunch or dinner, and the next morning, he'd come down ask for perceived blood sugar, and I'd be like, 400

Scott Benner 48:21
fasting so well, I mean, it was smart of you to get him involved, because it's interesting, isn't it? Like, were you able to see He must feel the way I felt when I was helping my grandfather. And, yeah, it took

Padma 48:35
me a while. We had, we had, like, a big fight before I saw that, because I was, it was information overload for me, and he was overwhelmed too, but I was just not even seeing his point for a while. And then we had, like, a big breakdown. And I said, Well, I see what you where you are right now, and I've been there for several years, but I just feel very strongly that the doctors are wrong and I don't have type two. I knew all of the stories of all of my family that really helped. And then we found out his insurance had a service called included health, or his employer provided that service. It's like a medical concierge service, so I could get a second opinion from them. So I uploaded all of my it's an app they assign independent primary care who will talk to you and then get all your test results and present it to a specialist. In my case, to an endocrinologist who never sees me, so it gives an unbiased opinion. I uploaded all of my details to him that should usually take two weeks, because they have to contact the doctors and everything, but I downloaded all of my results of my chats on the portal with the doctors and sent it to them, and in two days, they came back and said, You have type one diabetes. One of my questions was, if it was Lada? They said, No, it's not Lada. You're in full blown type one you need to be on insulin your insurance with insure, and you need continuous glucose monitors. You could go for libre or Dexcom, and it will cover it'll cost you this much with your insurance. All. Of those details in a 19 page report, and they send it to my primary care also so they can prescribe whatever I need. The remote Doctor contacted me right away and said, Well, we've sent it to your doctor, but go ahead and you send it to contact them so you can get unmet right away. I did that. I forwarded all that to my primary care, and they came back on the portal and said, Oh, the doctor doesn't think your insurance will cover continuous glucose monitors because you're not on three or more insulin shots a day. Well,

Scott Benner 50:26
it's because my doctor doesn't know what you're doing. He's trying to kill me. These people are trying to help me. Yeah, I took

Padma 50:32
a screenshot of that and uploaded it on my the second opinion portal, and that doctor called me back, like, five minutes later. It's like, Oh no, I don't think your doctor read the report. You need a new primary care, and he was freaking out.

Scott Benner 50:47
Well, I mean, you know, I've been having this thought the whole time you were speaking. I've had this thought a number of times making the podcast. But if I just bullet pointed what you said and put it into chat GPT and said, What's wrong with Padme, it would come back and say, she has type one diabetes,

Padma 51:01
yeah, yeah. I think I posted on TCO IDs. They had a page. I posted my story on that in the comments, and Dr Edelman responded on that and said, Oh, you need insulin. I was like, How do I get my doctors to test and how do I get an antibody test? I asked my primary care to prescribe the other antibody test, and he wrote back on the portal saying, Oh, I don't order that type of test.

Scott Benner 51:25
I think what they mean is, I don't know how to read the test. I wouldn't know what value it was later.

Padma 51:30
You know, they haven't in it. Anyhow, I already knew another Endo, another primary care that I knew through the Indian temple in Buffalo, and I contacted him, and I said, Hey, I need a new primary care. I told him my story, and he thought, like, Well, I'm not sure that your type one either, but with your numbers, you do need that, and I can know i'll see you in the next few days. And I had a trip, work travel, trip coming up anyway. So I said, I'll do that, and then come see you, because any other primary care was like months out in appointments. So went away on a trip, on a work trip. I had stopped all my medications by then, found a new window. I made the appointment, but that was out like six weeks, and went away on a trip with just, you know, I ended up walking like five miles a day and hoping. I considered becoming an alcoholic for a while, because that seemed to help my fasting blood sugars. But then I'm a lightweight. I couldn't handle more than a drink. The

Scott Benner 52:29
drinking was helping your blood sugars. And like, maybe this is the answer, yeah.

Padma 52:34
You know, if I can't get the test I want or anything, in the meantime, I also, when I posted on the TCO Y day website. They came back with a link to get a home test type, one tested.com I went on that and requested home test kit, and I got a call back from them, and they were really great. They were like, Oh, you're sort of beyond the thing for us, for you to be enrolled in the study, so we cannot send you the kit. I was like, well, you accidentally already sent me the kit. I have it on my desk here. They're like, Oh, okay, then go ahead and send it. We'll test it for you. You

Scott Benner 53:07
just live in New York, right? You don't live in like, yeah, yeah, yeah.

Padma 53:12
And this is not to the 1970s or anything. No, it

Scott Benner 53:16
makes it feel like you're just, I don't know what it makes it feel like, it feels like you're under a bridge asking random people like, what can I do? Yeah, oh my gosh, it's incredibly frustrating. Yep.

Padma 53:28
And the person who called from type one tested or a trial net was like, really great. Like all of you, all that you're saying, makes me believe it's type one. We'll test it for you, but it's very I'm glad you found a new doctor, because it's very common. I'm Indian. You know, there's also the medical bias that Indians are type two, right? Those doctors were just not willing to see that. So I I test sent like, one drop of blood, because I'm horrible at collecting blood myself, so it's my husband. So together, we managed to send them two drops of blood, and they sent me the report back, I was overwhelmingly positive for four out of five antibodies. The fifth one they couldn't test because there was not enough blood, gosh, and my gad numbers. It was like they sent me an email saying, you know, when it's borderline, we may question it, but you're so overwhelmingly positive that there's no other diagnosis. Here you are type one. Gosh.

Scott Benner 54:21
Well, I am so incredibly sorry that this is the pathway that you had to follow through. But I have to say, like, on some level or another, I think this happens to people every day, all day long. Yeah, actually,

Padma 54:34
I know that this all happened between end of June by September. I knew I had type one. I've read stories where people gone eight or nine years, and I've heard people come on your podcast. There was an episode that you released like two days ago, the day I made this appointment, that person was still struggling for an appointment for a diagnosis. Honestly,

Scott Benner 54:54
there are times that people tell stories that take so long to figure out. About that. It makes you think, like, they really have type one, like, how did they stay alive that long with those problems? But, I mean, what I've been able to figure out, the best I can figure out is that it's like a one and a half, like a lot of situation, and, you know, they do all these other things that kind of help it limp along and keeps it going for a while, and then the all the stuff that you talked about is what they're running into in their doctor's office, as well as just people who don't understand. They jump to conclusions, they have medical biases, and that all leads to this. And then a reason I appreciate your story so much is because you spent so much time discussing how it made you feel and how it caused issues between you and your husband and like, you know, it's not just the medical stuff, which is bad enough, right? It touches so much else in your life.

Padma 55:45
Yeah, and it's also the stark difference. When I was telling people I had type two diabetes and not believing it, I felt guilty like I had done it myself, or I could feel the judgment in people. No,

Scott Benner 55:57
that's what I'm talking about. Like it's touching your life in so many different, yeah, negative ways. I

Padma 56:03
also realized that there were so many of my family members who were exactly like this. There are some like the cousin I mentioned that I talked to had this bias on insulin. He's not on insulin. He's probably type one too similar to me. And

Scott Benner 56:17
because of the bias and the and the shame and everything, it's not even something they look at. All the

Padma 56:21
members of my family work very hard at their health, but to others, it look like they're just, oh, they're just failing as a diabetic, yeah, because they're going low or anything. So my great grandfather died in 1948 he was on insulin. It was in pre independence India that he was on insulin. We don't even, I don't. We're not like a very wealthy family or anything. We were very lower middle class back then, and they still made the effort to get him insulin.

Scott Benner 56:47
Yeah, he was gonna die without it, most likely. Yeah.

Padma 56:51
So he survived, but eventually he died because nobody knew about all that. And my grandfather was diagnosed at 78 and he was already old. I'm a very active person. He was as active as I am now at 78 and when he was tired or complained that things were not working, people just said, Well, you're old. You're supposed to feel like that. But for the closest of us, it was really hard to watch and deteriorate so fast. He died like seven years later of complications with his kidney and heart and things like that. But you know, he had had a full life.

Scott Benner 57:23
I just it makes me sad when it happens to older people too, because when it happens to you, when you're 78 they just think, Oh, this is the end of your life. Yeah, don't worry about he's

Padma 57:30
complaining that he can't walk four miles. Is like, well, you're an 80 year old. That seems normal to most people,

Scott Benner 57:38
yeah, right. And also, you don't get any kind of care at the end of your in those last years of your life, either, because people just think, Oh, well, this is the thing that's supposed to kill this guy. Do you know what I mean? Yeah, they get that vibe like, oh, that's the thing that's going to get you, I guess. So then we'll just ride it out and and you don't get any real assistance. And, my gosh, and then listen, even then, like you only talk this story right up until somebody actually told you what was going on. There's a whole other world that lives after that. Oh yeah, yeah. You might not understand what they told you, or they might not have done a good job of explaining it, and how are you gonna manage every day like this is, it's a bigger story. Even

Padma 58:15
after that, the care has been like the endo that I finally met. I've never met him in person. He's, I think, very old, but he has been researching with ozempic for type ones or newly diagnosed type ones. There was an article in the paper about him the day after I made the main appointment with him about how he was able to eliminate insulin needs for newly diagnosed so I met all of those requirements, and I knew all of that going in for the appointment, and I had my antibody results by then, all of that helped the new primary care that I had gotten. He didn't believe I was type one either. But then when I got all the results and showed it to him, he agreed. I asked him for more clinical tests for the antibodies. He had me write it down. He was writing it down, and then just handed me the paper, like, write whatever you want, and I'll go make a copy so I can learn about these tests. Also,

Scott Benner 59:07
I think the internet has done away with people's ability to just believe that doctors are magical, that's for sure, because now everybody can hear stories like this, like, I mean, it's awesome that he helped you like that, but at the same time, think about that from another perspective. Just tell me what you want me to say, like,

Padma 59:23
oh, and even he wasn't talking about continuous glucose monitors. To me, he explained, insulin. The way I got insulin is even funnier. He ordered Lantus, and as part for me or some or no log or something, I didn't get it this, the pharmacy didn't release it because they needed more information. This doctor is really nice. He called me at like, six o'clock in the evening because the pharmacy had not filled it. They said they needed more information from the doctor's office. He called me to make sure I got my insulin right, and I said, Well, they didn't release it because your office did something wrong. So he called the pharmacy, discussed it with them, and called me back and said, Go now you should have. Insulin.

Scott Benner 1:00:00
My gosh, did anything work out for you? Did anything work well for you? Hold on, okay, got

Padma 1:00:06
the insulin beds, but they don't come with needles. And it was like 755 at night before the first pharmacy closed at eight o'clock. So I sent him a text at night. I had his personal number. It's like, hey, the needles don't come. I did

Scott Benner 1:00:22
a cold wind episode yesterday. I've recorded one with a CD CES, who works in a GPS office, and she just spent the hour telling me like crazy stories that you wouldn't expect, and the number of people who are given insulin pens right for type one diabetes, type one, type two, diabetes insulin pens. And then they track them for months and months, and it seems like the insulin is not working. And so they say, well, use more. Use more. Use more. And then eventually she was in a meeting one day, you know, an appointment with a person, and you know, she said, Well, I don't understand, like, what's going on. And it finally struck her. She's like, go through this step by step with me, and the person went through it step by step, to come to realize that at the very last step, which is take the little cap off the needle, the protective cap off the needle, they weren't doing that. Oh, they were poking themselves with the needle and then injecting the insulin into the plastic cap, and it was squirting out on them. And she figured that out, because he said, I kept my fingers keep getting wet when I'm giving myself insulin, and she couldn't figure it out. Now, you would think, what a crazy one off

Padma 1:01:25
story. I thought you were gonna say they were squirting it into their mouth. Oh, she said

Scott Benner 1:01:30
other people injected into their food. Oh, but that's not that's neither here nor there on the first story. Now she steps back and looks at everyone in the practice and says to herself, I wonder how many other people are doing this, and then finds out that it's fairly common that people don't take the cap off the needle and aren't actually putting the needle in them when they're pushing the button. Well, okay, yeah. And she says, when you talk to the people, it's not because they're they're not dumb, they're not, like, not trying. She's like, they just got bad direction. And somewhere along the way, they don't see that little cap on the needle. Actually,

Padma 1:02:01
no direction. Adults don't get through get any of the instruction that, yeah, they do for kids. I was fascinated

Scott Benner 1:02:07
by that story because I think it says a lot more about the teaching than it does about the people. Yeah, yeah.

Padma 1:02:13
So then the next I sent him the text, and the next morning, he called me at eight, and he was very grumbly. He goes like, well, the needles are ordered now. It's like, oh, I didn't know they didn't come without needles. And he goes like, I didn't either.

Scott Benner 1:02:27
We're all learning together. Sadly, you'd think he might have learned. This is great, yeah, you think he might have learned before he started being your doctor. But okay, all right. Well, so

Padma 1:02:36
then I got my Lantus and no log, and then he had told me, like, you know, start with 20 units of Lantus day, and then see how it goes and moderate it. Like, how am I doing this? It's like, test, like, an hour after you eat or something. Say, can I get a continuous glucose monitor? He's like, Yeah, sure.

Scott Benner 1:02:54
Well, at this point, you're making the decisions anyway.

Padma 1:02:57
Oh, yeah, yeah, concert med school early on. I should have done

Scott Benner 1:03:01
that. Listen, it's possible. Well, not you, because you seem like you really research. But, you know, reasonable people like you who become doctors sometimes turn into doctors like that too, yeah, because then it goes back to teaching again, like the teaching in med school doesn't really help them. I mean, I understand they're trying to jam a ton of information into them, but it's a high level, quick overview about a lot of things. Then you go out into the world, you're supposed to learn on the job, except, apparently, then the system's so busy that nobody has time to learn. So they're just constantly, like, they're doctoring with, like, the first four sentences of the medical book. Basically, it's a bad system. It's reliant on people. People do not have the capacity to do what a doctor is asked to do. I'm not saying good doctors or bad doctors. I'm just saying in general, like the human mind, it can't hold all this information about all these different possibilities. It's, yeah, it's tough. You know,

Padma 1:03:53
they charge us a horrendous amount of money to do their job.

Scott Benner 1:03:57
They went to all that school and it was expensive. They got to take that money back somehow to do your job. Yeah, they charge you all that money, then you end up doing it exactly. And

Padma 1:04:06
I go every three months to educate them about things and pay them for it.

Scott Benner 1:04:11
Should ask them for a co pay every time you listen. I've told this story before, but I was once asked to go into another Um, another room at an endocrinologist office and explain something to another patient. I was asked by the the organization, like, Could you go over here and explain what you just said to me to them? I'm like, wait, what? I'm sure that's not right, but okay. And then the next thing I know, I wasn't I was introduced, Hi, this is this person. He's this girl's daughter. I'm going to ask him to explain something to you. Just explain to me. And then I had to explain, like, how I think about pre bolusing to them, yeah,

Padma 1:04:43
oh, pre bolusing. I had discovered that before I listened to your podcast, because good as part, was taking me, like 45 minutes to hit. I was supposed to eat, take it and eat within 15 minutes. I could see in my CGM that it wasn't hitting right away. Okay, so I had to take it earlier in. Earlier, and the doctors, even my new diabetes educator and everybody said, You shouldn't, you should eat right away. It shouldn't take that long. But they didn't consider giving me a different insulin until I asked them for it. I was on Lantis for the longest time, and it was just not enough. My a, 1c went from 12.3 to down to 6.6 within like, three or four months of starting on insulin. Yeah, but it took a lot of effort. Lantus doesn't last a full 24 hours. Yeah, my new endocrinologist didn't change that either, because they were focused more on ozempic helping newly diagnosed really,

Scott Benner 1:05:36
like, I mean, isn't it funny, though, that you didn't get, like, dress or a more modern insulin. I

Padma 1:05:41
asked for it multiple times, and they kept saying, No, I really wish my doctors had wear type ones too, but they kept saying, Oh, it's supposed to act the same way after like, six or seven months. I said, No, I want traceba, yeah. Atlantis is not working, and I'm not leaving until you change it. And they changed it, and immediately my lows and things went away. It's way more stable. Yeah, only the last appointment, appointment, I switched to FIAs good. I asked for tocibo. You guys changed it, and it's I'm doing much better now. So I want you to change this also. And they did. Yeah, they're

Scott Benner 1:06:14
not gonna argue with you ever again. Probably, you're probably in charge now, so don't let it go to your head. Hey, and I think I'm gonna call this episode phantom hemorrhoid. I've decided,

Unknown Speaker 1:06:26
Sure, thank you.

Scott Benner 1:06:27
I appreciate the vote of confidence on that one. I really think it's gonna draw people in. They're gonna be like what

Padma 1:06:34
I did think that too, because one of the other episodes that I had listened to, that person had strange but issues too.

Scott Benner 1:06:42
Hi, are you trying to get me to call it strange butt issues?

Padma 1:06:52
And I didn't understand. I didn't realize that it could have all been just part of my diabetes back until I heard that episode.

Scott Benner 1:06:59
Yeah, yeah. It's, I mean, listen, oh, she had the fistula. The girl that had the fistula, yeah, that blew up, like her, yeah, her ass exploded. Oh yeah, yeah, no, no, I remember. Didn't she have a, like, a fairly new boyfriend that had to help her with it? Yeah, yeah. That's just horrifying. Anyway, I

Padma 1:07:16
sort of felt like I identified that I've known my husband for a long time. He's not going anywhere. But still, I was sure when all this happened that, you know, it was only a matter of time, yeah,

Scott Benner 1:07:27
oh, you're reminding me. Now, by the way, that's my favorite title of an episode, I think because I called that one butt hole adjacent. She was trying to describe that this hole just, you know, appeared, and she was trying to tell me where it was, and that's how it ended up coming out. The story, oh my gosh, you and your husband are good now on all this. Like, yeah, so

Padma 1:07:46
at one point I was like, wondering why this was just happening to me. Like, you know, all the Indian bias and all of that. And I turned to him and looked at him and like, Hey, you're Indian too. Does your family not have this? And he just went, Oh, we my grandfather had to, we had to amputate his leg because it was not so uncontrolled. And that was another thing that reiterated, my my family was working very hard at this. No,

Scott Benner 1:08:10
I mean, the whole thing's just sad. I mean, Padme is just sad. Like the whole thing is, I mean, are you okay now, like modern, present day, are you in a good place? Yeah, I'm

Padma 1:08:19
still not on a pump. I was taking very little insulin. I was put on ozempic, and that caused me to lose even more weight, but it did help with my insulin needs. Yeah, at one point I didn't need any Bolus at all. I was just on basal, even with Lantis, and I was down to like, three or four units a day.

Scott Benner 1:08:39
Yeah, Arden's taking Manjaro. I'm sure she'll be thrilled when she hears this one day, but on the seventh day, when she needed to take it again, recently, she had her period, she really didn't feel well, and she's like, I just, I kind of want to skip this today, and in that one day, the difference about her meal spikes is incredible. Yeah. Just like, because, yeah, because the, you know, the GLP is gone. It's not doing what it's doing so, and it's not because she ate more or anything like that. It's just, yeah,

Padma 1:09:05
I could notice that too. But my bigger issue was, I'm not a very big eater. Even before all this, I eat just what I need, and I like eating good food. I went from like 166 pounds down to 112 pounds, wow. But I finally started on insulin and everything, I was down to 122, and with ozempic, I was very critically underweight. The treatment with ozempic for newly diagnosed is you start at point two, five and increase it every now and then I went up to one unit at one point, but then I was losing weight way too much. It was just not healthy. So I requested that I scale back, and I was brought down back, 2.25 and I didn't tell my doctors yet, but I stopped taking it, like three weeks

Scott Benner 1:09:51
ago. Okay, yeah. I mean, if it's keeping your weight down that far, it's tough. I guess I should say that Arden is not taking the full dose. We're not. Micro dosing it like she's not taking a little bit. Every day, we inject the self injector into a clean vial and then draw it out with an insulin needle and give her less than the 2.50

Unknown Speaker 1:10:13
you can do that by the clicks. Oh,

Scott Benner 1:10:15
no. This one's a self injector at all. It just goes in, if you're using ozempic then you did Manjaro is just boom, like, it gives you pen, yeah. It took us a while, but we figured out how many, how much of that dose helps her blood sugar, but doesn't slow down her hunger, okay? Because that became a problem for Arden too. Like, we were like, Oh, this is great. It's helping with her blood sugar so much, but she's losing too much weight.

Padma 1:10:38
It's not so much my hunger didn't affect my hunger that much. Okay, I just wasn't putting on weight at all. Generally, not a big eater. No, hungry to begin with. Yeah, of this, and I was still eating the same thing, but I was just not gaining any weight at all. I scaled it back slowly, and now I don't take it at all. It's not affected. Maybe if I took it, I wouldn't. I'm on like, 10 units of traceba at night, and maybe four units only for lunch and dinner. I work out so that covers my breakfast. Yeah, yeah.

Scott Benner 1:11:11
No, you you have more of, like, Jenny's vibe about, like, if you're super active, like, definitely is helping with your insulin needs.

Padma 1:11:19
Like, this year I did this. I didn't do the seven day ride. I didn't have time for it. I did only two days, and those two days I needed no insulin, and I was still dropping. Okay, even no basal. No. Yeah, no basal. I The day before the ride, I was already, like, I had started my period, so it was I need lesser once I started my period, so I reduced it to like two units the first day, and I kept dropping all through the ride, even though I had taken no Bolus. I ate a lot of

Unknown Speaker 1:11:48
donuts, but

Scott Benner 1:11:50
a bonus finally getting some donuts. Yeah,

Padma 1:11:52
and the second day, I skipped my basal too, and I was still fine for like hours after the ride.

Scott Benner 1:11:59
Yeah, that's interesting. I mean, Arden's needs drop when her period begins, her needs drop too. It's

Padma 1:12:06
also that adults, when we are diagnosed, we still make have more our C peptide doesn't go down to zero right away, maybe because our immune system is more mature when it hits it doesn't fully decimate the beta cells. Yeah, I'm

Scott Benner 1:12:21
not sure how to guess about that after all these years of hearing people's stories. But I mean, when people are Lada or are experiencing a slow onset, it can really go on for a very long time, and not for everybody. Some people's are shorter, but I mean, you're also eating well and doing a ton of activity, which I'm sure is helpful. And you know the osempic too well.

Padma 1:12:41
I can't do a whole lot, like, if I can do like, an hour before I need a snack, yeah? All right, drop. So I have to adjust. I have to eat a snack. I swam this morning for an hour before that. I have to make sure that I'm I go in at like, 160 Okay, really, yeah. And I've also found that the libre three is actually better than Dexcom. You enjoy that better, at least for me, how? So it was just widely inaccurate for me, I was on libre three, and I thought that maybe it was inaccurate before I discovered that Lantus was the problem. So my endos office Let me try a Dexcom. So I had both on at the same time. And the Dexcom was like over 30 off all the time, and it took, like, three days of calibration to bring it back in, to bring it closer to my actual finger prick

Unknown Speaker 1:13:30
value. No, we

Scott Benner 1:13:32
don't want that. That's too long. And the libre three with the

Padma 1:13:35
Lantus, it was struggling. Sometimes it would, there'd be white spikes. So I thought the sensor was reading it wrong, but it samples every minute, and it moderates it so it's actually very close to my actual my finger prick. That's

Scott Benner 1:13:48
great. I'm glad you found something you like. Do you think you'll go to a pump if your needs go up or no?

Padma 1:13:53
Yeah, yeah. Really don't have an idea of what, what is like a minimum value for a pump.

Scott Benner 1:13:59
I mean, you could use a pump now, but it seems like you it's not necessary. I mean, meaning like you seem like you're managing well the way you're going. Yeah. Do you feel like you want one? Though I'm

Padma 1:14:10
torn. Maybe it'll be easier, but I'm very clumsy, like I said, so I don't think it'll keep it on for very long, even the libre i keep losing every I hardly ever make it the full 15 days, I rip

Scott Benner 1:14:21
it off somehow. Why are you clumsy? Do you think it's just innate? Oh, that's that's

Padma 1:14:26
another side of the family. Okay, that's so funny. But I also do a lot of activity. So when I'm swimming, I could, like, rip it up or the sensor just fails. Sometimes. I found out that wearing it on my on my arm causes the sensor to fail more often. So I went with a longer swim bathing suit that covers that covers my thighs, and I wear my libre on my thigh. Okay,

Scott Benner 1:14:47
oh, you're fine. You're figuring it all out. You really, are. You really dove into all this? Yeah, yeah. It's awesome. I'm glad for you. I'm glad that you figured it out now, yeah, no, I'm just gonna say you just turned your nerd onto the diabetes. It sounds like that's. Kind of how I live my life in anything seems like it's working Pat. My really appreciate you doing this. Thank you for taking the time. And people don't know, but we talked about this before it started. You actually, and I'm glad this worked out this way. I had a cancelation. Usually my schedule is completely packed, and you had to cancel because of a work trip, so you jumped on to cancel, and saw this opening, and that's why we got to talk today. So I love the Kismet there. It's awesome. Sorry I ruined your you did ruin my sleep in today, but that's okay. I'm gonna get a lot done today, because I was

Padma 1:15:30
wake up at five. So I don't feel very bad about 20 years. I don't understand

Scott Benner 1:15:33
people who get up at five o'clock, but hold on one second for me. Thank you so much. You you. Thank you so much for listening today, and don't forget to go to cozy earth.com and use the offer code Juicebox to save 40% off of your entire order. Everything you throw in that cart is 40% off when you remember to type Juicebox at checkout. If you don't type Juicebox, you got to pay the whole bill. You don't want that 40% off. Get in there. Get yourself some clothes. Come on. What are you gonna walk around and that stuff you're wearing right now? I see you. It ain't good. Are you tired of getting a rash from your CGM adhesive? Give the ever since 365 a try. Ever since cgm.com/juicebox beautiful silicon 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. Thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juicebox if you're looking for community around type one diabetes, check out the Juicebox Podcast. Private Facebook group. Juicebox 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. Okay, well, here we are at the end of the episode. You're still with me. Thank you. I really do appreciate that. What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribed in your podcast app, go to YouTube and follow me, or Instagram. Tiktok. Oh gosh, here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page you don't want to miss. Please. Do you not know about the private group? You have to join the private group as of this recording, it has 51,000 members in it. They're active, talking about diabetes, whatever you need to know. There's a conversation happening in there right now, and I'm there all the time. Tag me. I'll say hi. The episode you just heard was professionally edited by wrong way recording, wrong way recording.com, you.

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