Scott Benner 12/20/24 Scott Benner 12/20/24

#1388 Multiverse

Bridget who is a former educator has 2 kids that have Type 1. We talk about raising a young type 1, 504 plans and planing for a possible school lockdown.

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

Scott Benner 0:00
Welcome back friends to the Juicebox Podcast.

Bridget has two children with type one diabetes. She's a former educator, and today we talk a lot about what goes into raising very young children with type one we talk about 504 plans, and we delve into how to address school shooting possibilities in those 504 plans. 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. Are you an adult living with type one or the caregiver of someone who is and a US resident if you are, I'd love it if you would go to T 1d exchange.org/juicebox and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa. This is the way t 1d exchange.org/juice, box. It should not take you more than about 10 minutes. If you're looking for community around type one diabetes, check out the Juicebox Podcast, private, Facebook group. Juice box podcast, type one diabetes.

Today's podcast is sponsored by us Med, US med.com/juicebox, you can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, libre, Omnipod, tandem and so much more us, med.com/juice box, or call 888-721-1514, the show you're about to listen to is sponsored by the ever since 365 the ever since 365 has exceptional accuracy over one year, and is the most accurate CGM in the low range that you can get ever since cgm.com/juicebox

Bridget 2:06
I'm Bridget Tisha, and I have two kiddos with type one diabetes. My son, Teddy was diagnosed when he was 18 months old. He's now seven, and my daughter Eliza was diagnosed just after she turned two, and she's now five years old. My kids are back to back in school, first grade, in kindergarten, and I really hope to share my experience with kids, young kids in school. As previous to having children, I was an assistant principal, and so I have a little more insight into what's going to keep our kids safe and happy while they're in school. So I'm happy to be here.

Scott Benner 2:54
That's awesome. I'm happy to have you wait. So let me do this again. You have two kids. The first one was 18 months.

Bridget 3:00
Yeah, just a baby five. Now he's seven, seven,

Scott Benner 3:04
excuse me, and the five year old was two when they were diagnosed.

Bridget 3:08
Yep, she had just turned two, and now she's five years old.

Scott Benner 3:13
Okay, um, wow. Do you have any other kids?

Bridget 3:16
No, we're two for two. So where's that?

Scott Benner 3:20
I was gonna say, any plans for a third kid?

Bridget 3:22
No, I don't know if the odds would be in our favor. So we're gonna we're two for two.

Scott Benner 3:27
Yes, it's gonna say, did you think of having more kids before this happened?

Bridget 3:31
You know, when my husband, I were married, he's the youngest of five, and I'm the middle of three, so we wanted to have a larger family, thinking three, maybe four kids. But at the time of my son's diagnosis, when he was 18 months old, I was five months pregnant with my daughter, and it was just to say I was at capacity with taking care of him and then being pregnant, and then obviously her diagnosis to follow. I still am at capacity. So we are so lucky that those two are our two, but they're going to be our only

Scott Benner 4:09
two. Yeah, I wouldn't even get a dog if I was you. No, I'd be like, nothing that takes more of my time. No way. You just said something. I don't know if I heard it wrong when my husband and I were married. You mean at the time you got married,

Bridget 4:21
yeah, we actually were married for about nine years before we had our son, and so we had a lot of time to think about how we wanted to start our family for us. We really considered finances. And we said, once we make X amount of dollars, I feel that we could financially live the life we want to live and give our children the life that we want them to have. You know, we hit that X amount, and we said, maybe in two years, then maybe two years, and maybe two years. And so, like I said, we were married for nine years before we decided to have our kiddos.

Scott Benner 4:50
Was the extra years? Were they for more money piling up, or just, you just kind of didn't, like get to it, or you were doing other things?

Bridget 4:58
No, it was more of like. Found were originally from Cleveland, and then we moved to New York City. We lived in the city for the past 10 years, and then just last year, in the summertime, we moved out to the suburbs. We traded in the city for the beach after having been married in Cleveland and having this adventure in New York City and living life there. You know, that's actually where we started our family in the city, to then move out here now. So it's more of getting married young, living our lives together, and enjoying each other, to then decide to start a family. Cool, yeah.

Scott Benner 5:32
I mean, I live near New York, and you see a lot of people kind of run to Jersey or Long Island or something like when, when it's time to have a send to kids to school, right?

Bridget 5:43
We're across the bay. Yeah, we're in Westport, so we're across from Long Island. Just

Scott Benner 5:47
the idea of having your kids, like, walk through the city every day when they're five to go to school or six. So, like, it's, I don't know, like, I don't think it's for everybody, but you were a city person. You lived there a long time, so, well, yeah, we did, what about it made you move?

Bridget 6:01
It was COVID, I say, of course, as if that was the catalyst for a lot of changes with families, my husband got COVID Three weeks into lockdown, and at the time, people were still disinfecting their mail. He had a quarantine for 10 days in our bedroom, and I was in the rest of the apartment with two kids. Everyone cried every day. My daughter wasn't even one. My son was two at the time. And it was then that my husband thought, you know, let's find whatever, an Airbnb, a lake house, a rental. And sure enough, this home was on the market. They weren't showing it because everything was shut down, but there was a garage code that they let us punch in and go look at it ourselves. So that was really the catalyst. And then once our kiddos school reopen, we would go back and forth from the city out here in the summertime, and then just made that permanent move when my son started kindergarten, which is a pretty common story for Yeah, New York City families, I'm

Scott Benner 7:01
laughing about the how did you choose your house? Well, it was one that was for sale and had a garage code, so

Bridget 7:07
you got it. Yes, the one we the bar was pretty low.

Scott Benner 7:12
This one will be fine,

Bridget 7:15
yeah. I mean, there was only so much Tiger king that he could watch to then look for a house. So it worked out well for us. I'm

Scott Benner 7:23
a solid hour train ride from Manhattan, and I knew realtors that were selling houses sight unseen, at like, exorbitant markups, because to people in Manhattan who were just like, I need to get out of here. Well,

Bridget 7:36
I'm gonna say you're talking to one of them, but we did buy three weeks into lockdown, no one knew what the market was going to do at that point.

Scott Benner 7:43
Yeah. No, not, not that early on. Hey, when you said everyone was crying, did you mean all four of you or just the kids?

Bridget 7:49
Oh, no, all four of us. All four of us cried every day.

Scott Benner 7:53
Do you think now, listen, I'm not saying you have a tiny little apartment, but when I was young and broke, we looked at apartments in the city and didn't end up getting one often. I think back to why we didn't, and I think it was because the best one we found, meaning the best space that we found, the toilet, was in the kitchen. There was like sides of the bed you couldn't traverse because it was too close to the wall.

Bridget 8:15
Yes, I'm sure we looked at the same apartment at one point or another. Our apartment worked out well because our kids were still so small, yeah, where, even now, by New York standards, was a very large apartment. I don't think that we would be as loving or as kind to each other as we are in a home versus that apartment. Yeah,

Scott Benner 8:38
it happens when you're too on top of people, it's hard. Yeah. Okay, so let's figure out your 18 month old, is your oldest? They were diagnosed first, and is there any other autoimmune in your family or type one. Today's episode is sponsored by a long term CGM that's going to help you to stay on top of your glucose readings the ever since 365 I'm talking, of course, about the world's first and only CGM that lasts for one year, one year, one CGM. Are you tired of those other CGMS, the ones that give you all those problems that you didn't expect, knocking them off, false alerts not lasting as long as they're supposed to. If you're tired of those constant frustrations, use my link ever since cgm.com/juicebox, to learn more about the ever since 365 some of you may be able to experience the ever since 365 for as low as $199 for a full year. At my link, you'll find those details and can learn about eligibility ever since cgm.com/juicebox, check it out. You've probably heard me talk about us Med and how simple it is to reorder with us med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up. Up to be called if I don't respond to the email, because I don't trust myself 100% so one time I didn't respond to the email, and the phone rings the house. It's like, ring. You know how it works? And I picked it up. I was like, hello, and it was just the recording was like, US med doesn't actually sound like that, but you know what I'm saying. It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it, push this button if you want us to send it, or if you'd like to wait. I think it lets you put it off, like, a couple of weeks, or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it. Us, med.com/juice, box. Or call 888-721-1514, get your free benefits checked now and get started with us. Med, Dexcom, Omnipod, tandem freestyle, they've got all your favorites, even that new eyelet pump. Check them out now at us. Med.com/juice, box, or by calling 888-721-1514, there are links in the show notes of your podcast. Player, and links at Juicebox podcast.com to us, med and all the sponsors. So

Bridget 11:08
the type one that is within our family is one of my husband's older sisters. She was diagnosed when she was 11 years old, and previous to her, there wasn't any family history that when she was diagnosed, it was actually because she suffered a seizure, went to the ER, and that's how they discovered it. Just last year, one of her two sons, who's eight years old, was also diagnosed, type one. Okay, I say my kiddos kind of are the family history. My sister in law, her name is Sarah. Sarah was diagnosed when she was 11, and then my two kiddos, and then, like I said last year, one of her two sons. Further information is that there's 11 grandkids on that side of the family. Of the 11 grandchildren, three have type one diabetes. One actually had a congenital heart defect, and there is another who has a severe form of muscular dystrophy. Wow. So there's a lot going on, at least on that side of the family that really, our family, in itself, could be a research study, but we were familiar with it before the diagnosis,

Scott Benner 12:21
does your husband have celiac or hypothyroidism or something like that? No,

Bridget 12:26
neither. Now, my mom does have hypothyroidism, so it would be a maternal grandmother, but nothing else within the family. Yeah,

Scott Benner 12:36
listen, Arden was diagnosed a couple of weeks after her second birthday. And that was, I mean, crazy enough. She must have weighed like 19 pounds right before she was diagnosed. She was down to, I think, 17 when she was diagnosed, or something. But an 18 month old, yeah, it's so high. I mean, you and I know things that other people don't like, thankfully, no, but it's just right. It's difficult on a level. It's hard to put into words, yeah, but your first diagnosis was, what? A few years five, five years ago, a little more than five years ago, right?

Bridget 13:11
Yeah, yeah, about five. I'm trying to do that quick math, yeah, five and a half years ago at this point.

Scott Benner 13:17
So does your 18 month old start with the CGM, yes. Actually,

Bridget 13:21
we left the hospital on the g6 part of the story of Teddy's diagnosis was it was over Christmas time, so even though we're living in New York City, we went back to Cleveland to visit family, and he was diagnosed on december 27 and while we're there, sure enough, and Sarah, even though she's in New Jersey, She obviously was in Cleveland, visiting family as well. She came to the hospital the minute that we heard the diagnosis. We called her right away. So she came to the hospital and basically said, this is the technology you need. Don't let them tell you, otherwise, you're smart enough to figure things out as needed as you go, but the technology is basically going to hold your hand as you figure it out. So yeah, we left the hospital on the g6 and then 10 days after that, once we traveled from Cleveland back to this city, we started on the Omnipod. So we were early adapters. As soon as we could have been we literally had to get the prescription filled in that time to then start the Omnipod.

Scott Benner 14:29
Aunt Sarah was some good advice early on. No kidding, yeah,

Bridget 14:33
I don't know how families do it without an Aunt Sarah, because she's been such a source of content and comfort she has, the experience and empirical evidence the back of what she says, but then we also get the warm and fuzzies from her because she's staring at So, yeah, if I could be anyone's ver real Aunt Sarah through this podcast, then

Scott Benner 14:59
all the. Matter, that's wonderful. So insulin needs at 18 months, you were still able to use a pump.

Bridget 15:05
We did. We started on it. Like I said, we never really went through a quote unquote honeymoon stage. And as I talk to more people, it seems more and more common, just because Teddy was, quote unquote, so far gone. Once we were transferred at a different hospital, we ended up speaking with an ER doctor who saw us, and he just told us, You were hours away from losing this kid. That's how far gone he was. So we didn't have any insulin needs, or, I say, like light insulin needs or diluted that's what I was looking for? No, yeah, so we started on that pod, yeah, 10 days after we left the hospital.

Scott Benner 15:47
So he's in DK, but when you look back in hindsight, how long had it been going on before it hit him that hard? Yeah,

Bridget 15:54
probably, I'm gonna say the the first sign or first red flag that we noticed was about three and a half, four weeks before his actual diagnosis, and I had gone to our pediatrician for his 18 month well baby checkup, and I just said, you know, we started on water, which is common among kids that age, in a sippy cup, and he's peeing out of his diaper. What do you recommend? And our pediatrician at the time said, you know, there are these things called spouse pads, or like maxi pads for diapers, and I'll help with absorption, and he'll be great. His weight was similar to what it had previous been, previously been about six months prior. So there wasn't that huge weight loss, but that was the initial again, like questioning because of a red flag, which we didn't know at the time was a red flag. Yeah, the urination was we thought due to his drinking water.

Scott Benner 16:52
Yeah, you probably thought, like, hey, super hydrated. This is awesome. I mean, looking

Bridget 16:56
back, it's actually more embarrassing, because I did think it was awesome. Yeah, I mean, he would wake up. We'd put him in his crib, and he would wake up at midnight, and he would be soaked from knees to armpits in his PJs because he peed out of his diaper. And we started using ASL sign language as soon as Teddy was born, so he could just communicate with us, and he would be signing for water, and we were breaking our arms, bent ourselves on the back to say, look at our child asking for water, like

Scott Benner 17:30
hydrating. Beautiful, yeah, oh, Bridget Can I tell you? I I've said this in the podcast before, but it you're bringing back so many memories for me. Yeah, that we were heading to a family vacation, and we stopped for gas, I'm gonna say, an hour before we got to this, like, beach house that my mother in law had rented for everybody. And when we stopped, we got this, like, one of these, just giant drinks, right? Like, I mean to say it was 64 ounces is probably not even correct. It was huge, okay? And Arden was just, like, in a car seat, and she wanted it, and we gave it to her. We got to where we were going. She was done. She finished the entire thing, and I went to get her out of her car seat. So you have to kind of reach down the side to get the buckles Right, yeah, and I reached down, and my hands, like, went underwater. Like, I'm not over exaggerating, in a puddle, yeah, yeah. No, no, yeah. I mean, and I My first thought was, oh, God, she spilled this drink into her seat. Like, that's what I thought happened, because I was, because I remember, like the cup was empty. And I was like, Wow, that's crazy. Like, she's such a small little person, you know? And then I was like, this is obviously what it is. And I picked her up, and I'm like, oh, Kelly here, like, you know, and we got her out, and I unbuckled, then I saw the seat, like, full, and I unbuckled it from the car, took it. I had to dump it out of the car, yeah? And then, like, rinse the whole thing off and wash the thing. But it was all urine on, unbelievable. It was insane. Yeah. And still, for reasons that, if I stopped and think about now, keeping in mind that that was probably over 18 years ago, yeah, as I think about it right now, I'm like, dummy, why did you not put everyone right back in the car and drive to the hospital? Unless you don't know what you don't know. I mean, but how do you not know that one, you know what I mean, like, like, that's not right. Like, my brain should have said that's not right and right. You know I get

Bridget 19:28
it. I do yeah, and I say, I hate that. I get it. And I know that our stories are so common, it's almost scary how common it is, or how that progression works probably, too, yeah, the urination, too. Then other red flags, and then the diagnosis, and then the hindsight of all those red flags stacking up, and

Scott Benner 19:50
then having somebody tell you in the hospital that Arden's like, she's a day away from being in a coma when you bring her in,

Bridget 19:58
yeah, yeah. I. Do know? Unfortunately, no, I'm

Scott Benner 20:02
saying you know, like, you know, yeah. Anyway, okay, so you go back to your Well, you're in Ohio, though, where you're diagnosed, yeah. So

Bridget 20:10
our pediatrician was in the city, and that's where our whole life was. And so now we go to Cleveland for Christmas, and on Christmas Day, Teddy did not want to open any presents. He was so tired and showing blue, like cold, like symptoms, labored breathing, kind of a raspy voice, cough, didn't want to eat or drink anything. So it was a bummer of a Christmas. But the next day, on December 26 we took him to an urgent care. After going to the urgent care, the doctor sent us to get a chest X ray, thinking RSV or pneumonia, those came back clear upon leaving now the urgent care doctor said, you know, if he's not better by tomorrow morning, take him to the ER, that's the direction you're heading in. Sure enough, that evening, we watched Teddy's belly button get sucked back to his spine because he was breathing so hard now he was sleeping, so we were hesitant to wake him up, to take him, and literally, just waited for him to wake up in the morning, you know, 6:30am to take him to the ER, we do that immediately, like I said, Because he didn't seem any better. And in that type one world, I say tail is old as time. They try to get an IV in him, and they couldn't, because he was so dehydrated. The ER doctor asked us a series of questions of signs and symptoms, and then let's say question number six were, how were his diapers? And I said, as much he's peeing out of them, can you soak? And this doctor immediately started and said, he has diabetes. We're going to take care of him and trying to get the IV in him. Then, like I was saying they couldn't, this doctor steps in to insert an IV into Teddy's neck because the other veins weren't available in his arms and feet. I will tell you, I'm actually hearing this go on from another room, as I am five months pregnant. Didn't eat anything in the morning, and I'm holding Teddy on a bed, and my husband says to me, you don't look so good. Are you okay? And I say, if anyone has a banana, I would feel a lot better. So they take Teddy away from me. With my husband, they go into another room. I now am starting to have tunnel vision. My mustache is sweating, and I tell one of the nurses, I said, I'm gonna pass out. I'm just going to lay down here, but I'm okay. I just need to eat something so I now, never actually lost consciousness. I'm talking with the nurse the whole time, and I hear this, er, doctor, I'll edit the profanity say, let me f and do it to get that IV into Teddy's neck, because the nurses weren't able to at that point, I did start to feel a little better, and I had something to eat, and they transferred us from the hospital we were at to one with a better pick you, where we stayed for four days, and then we were just in a regular room for two more days to learn All Things type one before we were then released.

Scott Benner 23:22
Wow, that's crazy, yeah, jeez. And at any point during this, like, when do you correlate it to, oh, I have another baby. I'm cooking a baby right now. Like, is this gonna keep happening? Is this gonna happen all because you have to think that at some point, right?

Bridget 23:38
Yeah, at no point in the hospital, though, because it was everything was so compartmentalized hour to hour. And truly, Teddy was in such a state that we, on day three in the PICU, were saying, When is he going to be himself? When are his eyes not going to be so glassy? I mean, it took a long while, felt like a long while, for him to like, come back to himself. We were actually told when we seriously asked that, when will he be back to himself? But they slowly had to bring his blood sugar down to avoid potential brain damage. And it was only I say after that fourth day where Teddy seemed to like come back to life. Could I think anything beyond and so when our daughter was born, we did ask our endo about doing the auto antibody testing, and our endo just said, Absolutely, but wait until she's two and a half. The results seem to be more conclusive after two and a half. Oh, and sure enough,

Scott Benner 24:36
don't worry. Yeah, we'll give you results before then. Don't worry about it. Yes.

Bridget 24:41
And so that's how we found out. Yeah, I was always on our own.

Scott Benner 24:45
Okay, all right, I see. So let's see, what'd you want to come on the podcast about? That was all very interesting. I appreciate that, and thanks for the trip down memory lane too. Yeah, Jesus. I can picture myself and Arden. And and Kelly in different scenarios, still like we're standing there, still,

Bridget 25:04
still when she a diagnosis when she was two, yeah, when you picture it now and granted, you know she's a lot older than my kiddos. Is there a sense of time separation? Because right now I still could see or feel like my kiddos are those babies, but they're five and seven. So do you have a time separation of that memory to present day? Yeah,

Scott Benner 25:31
it just makes me like talking about it. I don't know how to put it exactly. I feel tight across the top of my chest. That's interesting. Like, on the top of my chat, like I feel like, I don't know if this is like, fight or flight, or if I'm like, getting ready to try to do something. I flashed a certain moments over and over again. We went for a walk through, like, kind of an arboretum the night before, and I remember looking back at her and thinking, God, something's really wrong with her, and I remember hanging over a balcony with a computer to steal Wi Fi from the house next door to figure out if she had diabetes, because Wi Fi wasn't a thing back then. Yeah, I can feel sitting in a chair with my wife after they took her from us, like I can feel my wife touching me right now, like sitting there because I was so sad and like I I've said it before here, like I felt, like I could feel how sad Kelly was, like when she touched me, yeah, and I've never had that feeling before. And

Bridget 26:31
would you say that those that vulnerability is something that is was common? Like, were you in in tune and in touch with your emotions at that time to recognize what you were feeling. Or is it only in looking back that you now can re feel and name those emotions? No,

Scott Benner 26:50
I mean in the moment, it just all hurt. It all felt like different kinds of physical pain. Yeah, like as after you realized what was happening, like, I remember like, holding in crying in the emergency room, yeah, and then holding it and holding it. Then I couldn't and but Arden was asleep by then, I remember feeling so grateful that she didn't see me cry. Yeah. Like, that was one of the moments I remember sitting at a traffic light talking to Kelly and saying, I think when we get there, we were saying, like, she's gonna have type one diabetes, like, that's gonna happen, yeah? And I remember saying, like, everything's gonna change, yeah, like we're gonna have to do a really good job. And Kelly was like, Yeah, you know. And like, but we just sat at this red light in this industrial district, and it was so I don't know, honestly, it was, could have been three in the morning when we were heading to the hospital. Remember the time anymore, but it was super late, yeah, and I remember sitting there thinking, like I don't need to sit at this red light, like I could just go through it. And then I but I just sat there instead. And I remember being in the Kelly sent me out for a meter earlier in the evening, and I had the conscious thought, standing in the in the pharmacy, in a 24 hour pharmacy, that if I didn't leave with the meter Arden, would never get diabetes. Maybe it would be a good use of my life to just stand here, yeah, like, so that this doesn't happen to her. And, I mean, it's silly, but like, that's how I felt in the moment. Yeah, I had to will myself out of the out of the store with the stuff with the meter. No,

Bridget 28:27
it's not silly. It's relatable. I mean, the the negotiating that I've done with myself and my own mind, or, you know, with my husband. My husband's name is Joe, I will tell you that when our son was diagnosed, it was all new to us, but he and I are both radically type a people that we knew we could handle anything. I remember thinking and saying, Actually, I just want to be 90 days out. Give me three months of this, and I'll be a pro. We're now way beyond the 90 days, and I'm still not a pro, but when my daughter was diagnosed, it was only at her diagnosis that my husband was holding her. Did he cry because he knew what was ahead of her, where? When our son was diagnosed, I'm gonna say ignorance is bliss. You know, we didn't know the reality of it, even though we had the overarching idea. But it was when our daughter was diagnosed that a lot of those similar emotions paralleled what you were saying. Yeah,

Scott Benner 29:35
no, I hear that, especially now that you understand what's about to happen and not just the physical and the time and the mental energy stuff, like, that's, you know, that's part of it, but the implications, you know, over them, or even, like, I mean, Arden's 20 and, yeah, you know, the other day we were talking and, like, we're adjusting some of her medications, their blood sugar has been. And higher than we wanted it to be for, you know, a couple of weeks while we're getting stuff together, sure. And I was like, I need you to do this. And she's like, I'm trying. I'm studying. I was like, Alright, I need you to just take 10 minutes. Stop, like, stop for 10 minutes. And I hate that. That's what we're talking about off at college. And she's doing a really good job, and she's putting all this effort into studying and everything. Yeah, and I'm telling her stop studying to do this, and it feels so very unfair, and I know it's hurting our relationship. It's hurting her like her experience, and yet it's the exact right thing to do. It

Bridget 30:39
is and I'm convinced, whether we're talking about a kid who's two or who's 20, that we as parents take it on. I say that, you know, I'm telling my story because my kiddos will have their own story to tell, and I want to make sure that diabetes is the least interesting thing about them. And so here you are talking with your 20 year old daughter, essentially doing the same thing to make sure she's safe and healthy. So

Scott Benner 31:12
I was upset last night where my wife and I were talking about this in bed, and she's like, you're talking to me, like, I'm her right now. And I'm like, I'm sorry. Like, I'm like, I'm like, hold on, you know, yeah, and I said this is going to sound crazy for a second, or not crazy, but just, I don't know. I don't know how it sounds exactly, but when Arden struggling with something, or I'm even seeing she's doing well, but there's a struggle ahead, or you're worried about the things like we just talked about, I picture different people that I've interviewed, or people from the Facebook group, yeah? And I look at them all as, like, you know, the idea like, you know, so popular in movies now, like a multiverse, yeah, right. I look at all the people that I've spoken to, yeah as infinite possibilities about where my daughter could go yes, and I'm trying to get her in the direction of one of the people whose story seems the most well balanced and healthy. Yes,

Bridget 32:12
that's totally, totally see that or relate to that. I only recently went to a breakthrough T 1d event, and there's a lot of younger parents and parents younger kids. And then there was one woman in particular who said, My daughter is 24 I just come for the extra support. This is what she's doing, x, y, z. Her daughter was diagnosed when she was about three years old. And I said, You're the one I want to talk to to know that you have a grown up, you know, like your child has now grown up, like you've walked the walk. As I can offer any sort of support, I can almost like to newly diagnose parents of younger children newly diagnosed. I cannot get enough encouragement from I say, someone like you, Scott, having Arden or this other mom that was there at the event, because we don't know what the future holds for them. We don't know as parents, how responsible they are going to be in college. So we're trying to bank as many good years as we can so that they can live like they want. Yeah,

Scott Benner 33:14
not only that, but you can make every right move, and it won't matter like, you know, you still have young kids. Like, look, this is not a dig on you. You have young children, right? And as your kids get older and older, it's and not that you don't see this in other personal relationships you have in the world, but you recognize that, like you're not in any way in control of who someone ends up being, yeah, or how they take something when it's said to them, or how they traverse an experience when it's presented to them, like, you just keep putting them in the situations and saying the things and modeling the things that you think are gonna lead to some sort of like success in those moments. Yeah, but like, I look at like there's a guy right now. I won't say his name, but there's a guy I'm thinking of right now from the Facebook group. I don't know him. He's a grown man. I think about him almost all day long. Oh, wow. Like, like, he just his life is just not going the way he wants it to go, and I'm finding myself trying to figure out how to help him, even though I don't know him and he hasn't asked for my help, yeah? But I think I'm trying to figure out how to help him, in case, one of the things I'm seeing happen to him happens to my daughter. Gotcha, yeah? You know, I don't think I'm really gonna help I want to be clear, I don't think I'm gonna, like, fly in, like, on a white horse and save his life. Yeah,

Bridget 34:40
yeah. Very Steinbeck, of you, like, they're all my sons, as if you get out there,

Scott Benner 34:44
well, it's not even, like, I don't even know that. Like all, listen, this is a weird medium. I talk into this microphone. You guys take out of it. What you take out of it? I'm not in control of that, right? I hope that more people take something good out of it than, than not, right? But for me. Personally and for Arden and my family, yeah? Like, I don't know. I just look at everybody as like a learning like, again, like, it's like a multiverse of possibilities of what could happen to her. Yeah, and I'm trying to figure out how to manage all of it, in case one of it. I mean, I don't know. Like, does this not sound like parenting, really? Like, yeah, yeah. So was

Bridget 35:22
there ever a time when Arden was, I say, in school, whether, like, elementary, then through high school, where she did actually surprise you, type one or not, but in the sense of you saying, like, you know, you never know who your kid's going to grow up to be or how they're going to react to something, was there something that actually surprised you about her in a particular instance,

Scott Benner 35:44
surprised me, like, badly, or maybe just,

Bridget 35:49
yeah, maybe just more of that what you expected, like, here we are talking about you don't know who they're going to grow up to be or what they want to do with their life. Was there, and my kiddos are so young that we just haven't experienced it. So is there, was there any time that you can think of, even if she were in elementary school to high school, where she actually surprised you with her reaction to something?

Scott Benner 36:10
So I think that when I'm surprised by Arden, it's because she comes off so strong that when she's not when she's actually hurt by something, that doesn't surprise me, but it it takes, I guess it takes me more by surprise, like, I'm like, Oh, I didn't imagine that you'd feel that way in this and then I remember that she's young and and, you know, like she's got her vulnerabilities as well, but she doesn't, she doesn't, she doesn't show them to people very much. And you can get confused into thinking, like, that's who she is, like she's, you know, like rock, like nothing touches her kind of thing. Yeah? Like, I mean, I've seen her break up with boys and expect, like, a thing to happen, and then it just, it's not what happens. She deals with it in her very own, like, kind of unique way. Yeah? So when something actually does knock her over for a second that shocks me a little bit.

Bridget 37:03
That's so interesting. Yeah, what I say? What a great quality to have, but yeah, I'm sure as a parent, then that is a bigger surprise,

Scott Benner 37:11
but also feels unfair, because I recognize that everyone struggles with things, and then I feel badly for not knowing what those things are, yes, because she's obviously taxed by them. Yeah,

Bridget 37:23
I say I can relate. When we were living in the city, our kids went to a private school was, you know, choose program up through 12th grade, and so they would hold some parent seminars on how to raise a reader. And one of them, in fact, was called How to instill grit into your child. And I attended this seminar, and I was like, oh, man, you don't even know, like, the definition of grit here is so relative, as we're talking about, you know, a 10 year old in a karate championship versus these toddlers of mine that I have and what we're dealing with. I heard

Scott Benner 37:59
some grown ladies complaining about something the other day, and I was like, Is this what qualifies? Is hard for them? I was like, This is insane. Yeah, it's all relative, right? Yeah, exactly right. When I was listening to them, like, these are things that are really taxing them, like, so I'm not making fun of them. I'm just like, there's nine different levels of hell above what you're experiencing. But okay, also I don't. I've spent that's an interesting thing. Like, how do you instill grit into somebody? Like, I've done a whole series about resiliency with Erica, because I thought about that as well. And in the end, I don't know that you can just make someone resilient. Yeah, I think it's just, it's how you react to things. That reaction to my eye, is built on whatever your lifetime of experiences is how the people around you reacted, you know, the tools you had at your disposal every time you were in one of those situations. You know, could you afford it? Because, I mean, all the other problems that come with everything, right? I don't think people just decide to be tough or not to be tough in a situation. Yes,

Bridget 39:01
I would agree on that. No, I just, I totally agree. It's all

Scott Benner 39:05
relevant, and it's what makes all this so scary. Because you could have, like, stood up to the first 20 things and been like, wow, bang, bang, bang, no problem. The 21st thing comes along and you're like, you know what? I can't do this anymore. Or it hits you from a different angle, and it takes you by surprise, and you don't get back up again.

Bridget 39:25
Yes, it's true. I remember I say even before I had kids, and within my extended family, there were some other just tough times and tragedies and saying to myself, I don't need tragedy to know how lucky I am. And then here I have kiddos, and then they're both diagnosed, and it's like, I don't I still feel that way. I still feel like I'm so lucky that they're ours. I didn't need the tragedy to know how lucky I am. And so that's interesting, how you say that too? Yeah,

Scott Benner 39:55
even though you didn't need it, did it level up your perspective? Oh.

Bridget 39:59
Oh, my goodness, leveled up my perspective and then changed the weight of my vocabulary. So I might have said previously, oh, I'm tough and I'm strong. Well, now tough and strong have such a larger meaning than they originally did. Or, you know, just to come back to grit, like I've always been a very gritty person, but now that grit is, you know, to the nth degree.

Scott Benner 40:33
I feel like I've been buried alive and unearthed myself like a dozen times. Yes,

Bridget 40:37
yes, that's it. And you might have even said before that you were resilient, but now the actual connotation versus denotation of resilience are even farther apart because of, yeah, what you've come through.

Scott Benner 40:52
I'm just always endlessly fascinated about why, like, people's reactions and situations. You know what I mean, like, at some point in my very young life, someone told me, You're adopted, like people had you, and they were like, eh, here, and then gave you to us. And my mom, of course, sold it like we were so happy to i She said all the things you would say and that are obviously true, but it doesn't negate the fact that somebody gave birth to you and was like, I don't know, yeah, but, but I feel like I'm okay, but obviously I'm changed at the same time, yeah, and then, you know, and then things happen again and again and again and again and and you're okay, but you're changed, okay, but you're changed. But I've never just sat down and been like, I give up, right? You know what I mean? And so I like, These things keep happening. I watched my son go through this for a while, like, where he was just, like, everything goes wrong all the time. And I was like, yeah, that it's not going wrong. It's just everything's always changing and morphing and reshaping into something else, and it's not what you expected. And so it feels wrong,

Bridget 41:56
that's it. And so it feels wrong, even though the reality is not black and white, and that good versus bad. And you know, I'll even share in talking with my therapist about this and my kids diagnosis that I went through something very difficult and very strange, and I am now changed. Being from Ohio, I have this Midwest almost toxic positivity, like this prima Pollyanna and I am not that same person that I was before their diagnosis. It's not to say I'm better or I'm worse, but changed, and so it's interesting to hear you even say that with your son in Yeah, in that regard, of just things not going the way you maybe envision, not even that you wanted, but just that you expect it,

Scott Benner 42:50
right? I watch him so interesting. Probably around 12 years old, he was significantly a significantly more talented outfielder on his baseball team than the other boys, yeah, but he didn't start. And you'd look back at it and say, well, there's a coach's dad there, there's, you know, coach and a kid and a lot of there's, yeah, there's these political reasons. And you step back and really suck? Is that what's happening? Like, does my kids suck, or is this like a political thing, right? Yeah, and you never are gonna know for sure until hindsight, but hindsight told me okay, it was political and it was structural, and he was trying to fight through a system, right? That's fine. Then he got to school, and he was treated really well in middle school, when he played, but then when he got to high school, he started off being treated well, and then he ran into a coach who was he came home one day and he just said, this guy's so cruel to everybody. I don't want to play for him. Wow. And he played for him for a while, and then one day, he just said, I'm not going to do this anymore. And at that point, Cole was starting in center field for his high school baseball team and playing well. And he went to the guy one day and said, I'm quitting, and Cole was on track to play in college, and he said, I'm quitting. I can't play for you anymore. I can't stand the way you treat these guys. Wow, what a brave thing. And you would think, but then everyone on the team turned on him, oh, man, and treated him poorly. So while he didn't get to play high school baseball for the last year and a half, he was in high school, yeah. And then he had to go off on his own, his personal time, and play baseball to keep, like, up the idea of going to college, yeah, then he got to college. And then you get to college and you realize, oh, my god, the same political structure exists here that did in, like, in Little League, it's and you fight through it again, yeah, and again. And he has this awesome senior season, and at the very end of it, God, I don't know if this is too personal, but somebody on the coaching staff apologized to him quietly into his ear for not seeing who he was sooner. Wow. Said to me, he's like, that was not comforting. You mean, I was who I thought I was, and you didn't see it, and you wasted this time in my life and my opportunity,

Bridget 45:10
right? That probably pulled on him. Yeah, all these

Scott Benner 45:14
things feel like everything stacked against you all the time, and you as a parent, are trying to say, look, you're healthy, you're standing upright, you got a good education, you met all these people, you had these experiences. They weren't where you expected them to be, but look, they've made you stronger. That's going to help you in the future. That's a hard thing to sell to a 21 year old, you know? Yeah, yeah. And a hard thing to sell to a little kid, all this struggle is going to make you stronger. And it's now He's 25 and it did. It all worked exactly the way we thought. But I don't know if you asked him, like, Would you trade it like? I don't know how he'd feel about like, the fiery walk through to be hard at the end. You know what I mean, right?

Bridget 45:52
I do. I totally do. And then to give it the title of brick, or do we qualify that then as better? Is it worth it? Yeah,

Scott Benner 46:04
because, because, to him, it probably feels like, I mean, I wouldn't want to speak for him, but I would think it feels more like you outlasted these mothers than I'm pretty right. This one's coming at me and trying to take my thing, and this one's trying to take my thing, and this one wants to get in the way of the thing I'm trying to accomplish. And I just didn't die in the face of their pressure. Yeah, yeah, yeah. I don't know what that's gritty, and also, it doesn't sound fun, but exactly

Bridget 46:30
that's something like, is it even? Is it worth it? You know, there are things that you come out of that you would say, Oh yeah, it was worth it, and I'm better for it. I don't know if he would apply that to the last year and a half he had in high school?

Scott Benner 46:43
Yeah, right. It isn't until you get, like, one win, and then I find, like, for me personally, it all sort of just goes away. Then, yeah, you're like, oh, I don't know if it's not something to do with our the timeline of our life and our expectations. Does that make sense?

Bridget 46:59
Yeah, almost like the recency theory. I can totally understand that. Yeah, tell me that. What is that recency theory is really just whatever has happened the closest to the time that you're talking about or referencing is what you hold to be true. So even if, like, you know, you went through all these hard things, but now life is better hunky dory. You could say that it's worth it, and it's really just because that's where you are now. So it's the most recent,

Scott Benner 47:24
yeah, if you didn't have long term memory, which, by the way, is maybe shaky to begin with, about how we remember things, but if I was just the person I am right now with all the thoughts in my head that I have and I didn't remember yesterday, I don't know that it would matter, right? You know what? I mean, yes, yeah, that. So that's the thing that I think you have to be able to, you have to be able to, like, not fall down. And if you do fall down and get up, and if you do forget up, keep moving and then not look back. I think all these things are true. Yes, it's the seething anger that you get when you look back at like, Oh my God. You know that happened, and that happened. I don't, I don't think about even problems I have today. Some of them are with, you know, professionally or personally or something like that. Like, I just wake up the next day and I'm like, Let's go again. I don't like, what happened yesterday? Doesn't matter. Yeah, my

Bridget 48:12
husband and I often, with our kiddos in particular, will say to each other, relentless forward motion. And that's what we have to do. I say to keep ourselves going, to keep them going, to make our family as harmonious as we can't we have this relentless forward motion, yeah,

Scott Benner 48:28
yeah. And as long as something doesn't literally kill us right, or damage us to the point where it alters our ability to be who we want to be, right, then, you know, you got to just take the good with the bad and then just keep going right. Try to stay with the good and keep running forward. I'm with Yeah. I really am, yeah, that's awesome. Geez, sorry. We're 47 minutes into this now, okay, dealing with school. Oh, this is what you really want to talk about. Tell me about school and 504 plans.

Bridget 48:56
Yeah. So I wanted to talk about 504 plans because as my kiddos are getting into what I call, quote, unquote, real school. I mean, they were diabetic when they were in preschool. We didn't need to have a formal plan in place because they weren't being tested on how well they molded Plato where now it's, I'm gonna say, a little more serious. And so in creating their 504 plan and having my experience as an assistant principal, my perspective was maybe different, even sharper than other parents coming into this. So I really wanted to talk about 504, plans, because they sound super scary. So here I am trying to be the prover real Aunt Sarah in offering comfort with the content to say these plans are in place to keep our kids safe and healthy. These plans are in. Place so that they can attend school like every other kiddo. And the specifics are going to be different for every kid, because there are individuals, but there are some ideas that apply to everyone, like actual testing in relationship to blood sugars, I hope that parents can recognize their kiddos have different actual physical behaviors and different cognitive behaviors when their blood sugars are obviously too low and you're in an urgent situation, but then also too high, I mean above 180 and we can see change in my son's focus versus where he is if he's in a more ideal range. And so that can be in your 504 plan. I also want to be clear that 504 are different than IEPs, and it's nothing that we need to dissect here. There's actually a podcast called the heart strong, and it might be episode 42 or 43 if I can plug it right here. And they talk about the difference between 504 plans and IEPs, depending on what your kiddo needs. IEPs are just more for, I'm gonna say learning disabilities, or if your child needs extra help on a specific area of learning more 504, are just the the medical plans. And I want to stress to parents that they are advocating for their kiddos, because they are the expert on their kiddos, and so these 504 plans really can be whatever you want them to be. Now, yes, the school needs to sign off on it, but you're there to advocate for your kiddo. Most schools or districts have actual 504 forms. I think a lot of parents hear the term 504 and they say, Well, where do I get it? Or how do I do it? You do not need to approach a 504 meeting with any documents in your hands. They will be created together with your faculty, staff, administration, the nurses in your school. That's one thing that I always came to the table with. I created an actual binder for my kids that talks about what type one is, how to react when the kids are at snack time or lunch, how to treat highs, what to do in an emergency, how to read the Dexcom. I even have a Excel sheet chart that if I were to fall off a cliff, you could match up the kiddos blood sugar on the x axis with the Dexcom arrow trend on the y axis, and then spot them together to say, okay, no action is needed. Or, oh, let's treat with 15 carbs, whatever it is while I

Scott Benner 52:59
Oh Bridget, how did you do that? Just a

Bridget 53:02
lot of time. Actually, I have to give the credit to my husband for creating the actual, actual Excel sheet. But truly down the x axis in increments of 10, we have it labeled from 60 up to 250 and then across the y axis we have each of the arrow icons from double up, single up, angled up, steady, diagonal down. And it works single down, double down, yes, and you can match up the kiddos again in increments of 10. So the closest blood sugar reading they are to 10. Let's see, for example, like if your kiddo is, I'm trying to find a good example here 90, but they are diagonal down, and according to their schedule, they're going to recess. They're heading out to recess. And my daughter, Eliza, is 90 diagonal down, and the nurse can't get in touch with me. She can go to this chart to say, oh, you know what? We're going to give her five carbs of sugar before she goes out to recess. So for us, it just be like five individual fruit snacks, and then we know Liza is safe to go out to recess. So it was created again, if I were to fall off a cliff and can't get in touch, or they can't get a hold of me, they don't need to. This was the the nitty gritty. I had to use that word that I wanted to spend a little more time talking about, though, on these 504 plans was if there were a emergency, if there's a lockdown if there's an active shooter, and that's where this binder or that chart would, in fact, come into play. And so it should be written out in a 504 plan the best care to keep your child safe and healthy. As I talk with more parents, moms in particular about this safe and healthy, typically for us, means a steady blood sugar that there isn't an emergency, yeah, where the reality is safe and healthy for all students is going to look different than our kiddos in those emergency situations. Yeah, I was wanting to connect the shooter that sort of thing. You've

Scott Benner 55:00
been, I mean, tell me what you did professionally again, or I

Bridget 55:03
had kiddos. I had, you know, worked in retail for a while, but then I was an assistant principal at an elementary school, and just previous to that, I was the writer for an instructional design company. So I taught people how to do their jobs. Taught garbage men how to physically drive the truck and sanitation workers what to do in a recycle facility. So lots of teaching, orientations, administrative work in that regard.

Scott Benner 55:29
So tell me, then, in a real like, like, emergency situation, yes, how likely do you think it is that a teacher is going to be like, oh, there's an active shooter in the building. Hold on. Let me get Teddy 504. Plan.

Bridget 55:43
Yeah, right, right. I agree with you that everybody

Scott Benner 55:46
get in the corner and let's pray to God. We're hitting the

Bridget 55:49
nail on the head with a hypothetical that's actually real. I so I wouldn't call it hypothetical. Your example is exactly what we're referring to, and so I've worked with, obviously, my kiddos, teachers and other teachers I know to say, what is going to be the best and the easiest way to take care of our kids in emergency situations. So every classroom, I'm gonna say, across the country, it has like an emergency go bag, and it's where they keep all of the kids emergency contact. I feel like I only remember my teacher bringing it like if we went on a field trip, but this backpack is in the classroom and would be wherever the lockdown location is for the kiddos. And so we keep this binder in those backpacks in the respective classrooms where my kiddos could be for reference, I do send an email the teachers a digital copy, because, I mean, it's so hard to talk about that you don't want it to be real. We have to keep them safe where, if my five year old is being escorted through the hallway as an active shooter is in the building, and her teacher pushes her into a art supply closet. That emergency backpack is not going to be there, but the teacher would have her phone on her so she could pull up that digital copy. My kids do wear spy belts throughout the day, and so they hold their medical devices, extra fruit snacks, things like that, to keep them safe and healthy, but it has to be thought of as as their parents. There is a Nobel Prize winner in economics, I think, from 2009 was the year, and she said that there's no reason that bureaucrats, no matter like how well meaning, like how well meaning, or like how intentional they are at solving the problem. They don't have the strongest incentive to get the solution right, but we as parents do. And so, you know, just from my experience, and then having the two kiddos put me in the new, the unique situation to share that, you know, I feel like they

Scott Benner 57:57
write it all down. They're like, it's all written down, it's going to be fine. And then when the time comes, nobody can find it, nobody knows what it means. What it means. Yes, you've got it. I want to tell you right now. Maybe this is wrong, okay, but here's what I told both my kids. Yeah. I said, if you're on the first floor, I want you out the window, zig zag to the to the tree line, go about 10 feet deep into the trees, make your way out to the main road, and then get back to the

Bridget 58:20
house. That's similar to Alice training. If any other parents or kiddos are familiar, you got it, yeah? That's called a similar to Alice

Scott Benner 58:26
training. Arden, I told bang, a juice box, jump out the window, zig zag the tree, walk. Like, I mean, I don't know what else to say. Like, yeah. I mean, I have had so many conversations with so many people in so many different situations where they have been what they thought was prepared, or they have been the people that they thought were going to be rock solid in the moment and then they just weren't. You know,

Bridget 58:49
we actually have told our kiddos the same that, if ever in doubt, they can have more fruit snacks or an extra juice box, whatever it is. Yeah. I mean, we've even gone as far as we tell the teachers, like all of their devices, if you're on a true lockdown, all of their devices can be powered off. People for decades, were handling their diabetes without the technology. So it can be done. And we have said, power off their devices and give them five fruit snacks every what I forget, what we said, There's something like 30 to 60 minutes until it's safe to turn them back on, as if, like, we'd rather have them running high than running

Scott Benner 59:25
low. Okay, you'd rather see your kid with a 300 blood sugar than beeping that draws attention to them

Bridget 59:31
exactly. And I say you're right for the beeps and the boobs. I mean, I had to tell my five year old she can't wear her light up unicorn shoes to school because, God forbid, she applied an extra ounce of pressure to her heels while in that supply closet to give away her hiding spot because of her light up shoes.

Scott Benner 59:50
You know, it's funny, so I see, Listen, I I know how often this happens, and I know that preparation is probably key, but at the same time, you. Think that I don't know. Percentage wise, this is not going to happen to most people. And then, so then there's, like, that other side of it is, like, are we freaking out a generation of people to be ready for a thing that may or may not happen to them? Like, can't. Like, it's such a hard thing to think about. You know,

Bridget 1:00:16
I oh my gosh. I do know what you mean. We live a stone throw from Newtown, Connecticut. So yeah, I do know what you mean, because we know those parents. We actually, you know, I say, have an acquaintance of one of those teachers. So, yeah, yeah, you're just

Scott Benner 1:00:31
from where it happens. Really does change how hard it hits you. Like, I'll talk to people I know that are from like, the middle of the country. You talk to them about 911 and they're like, well, it was, like, really scary and all, but like, it doesn't feel as real, because I don't know anybody was there. It's really interesting. You know,

Bridget 1:00:48
that's, I think that's more than interesting. That's fascinating. Yeah,

Scott Benner 1:00:52
I'm talking about back at the time, I'm sure now, with distance of time and years, they understand the impact of it. But right, as it happened, they were just sort of like, oh, it's weird. Like, a, you know, I mean, like, it hit them differently, I

Bridget 1:01:04
think, yeah, a news story, as opposed to, yeah, a

Scott Benner 1:01:08
thing that, like, where. So I could have walked out in my backyard and I could see the column of smoke for like, days, right?

Bridget 1:01:13
Yeah, yes, yeah. I say exactly. And so to talk about this and to bring it to parents attention to then relay it to the school administration. Hopefully will, will never have to be put into practice. But I know that I feel better with more information. I want to know as much as I can, and then potentially cherry pick what I actually apply, but I want all the information to then decide what I'm going to do with it, and so that, in particular, in that sort of situation, I actually, I say, put in the same category as the advice that I tell my kids, they are never allowed to be the first one out the door for a fire drill. I said, You are never going to walk out first. You always be the last one out, and it's for what we've learned through actual not drills, but active shooters, and I'm only going to be as prepared as I possibly can for the best outcome that could possibly be through all things in my control.

Scott Benner 1:02:22
Well, listen, I You're gonna hear an episode on the podcast next week that's gonna absolutely fry your brain for your preparedness. Because, okay, a woman came on to talk about how her kid left their her phone in the car before she got on the bus, and so the mom had to call head to the school and say, Look, until I can get the phone there, just go to the 504 plan, handle everything with shots and etc. And by the time she got to the school, the school nurse had given her daughter 150 units of insulin. No, yeah. Why do you hear it?

Bridget 1:02:53
It's crazy. Oh, man, I say I can't, I can't wait. I'd ask you what happened, but that'd be some major editing for you. Yours

Scott Benner 1:03:01
will come out way after theirs. But I don't want to give it up for the people who are just hearing it right now. Yeah, yeah, no problem. But I'll tell I'll tell you, if you're listening and you're interested, you are looking for episode. Give me a second. You were looking for episode 1323, it's called school nurse mistake. So

Bridget 1:03:19
unbelievable. We actually had an instance at summer camp this year where there were multiple t1 DS in my daughter's camp group. The wrong remote was used on the wrong child. So I received a text message that said, Liza passed down snacks today. And I said, No problem. Nothing needed. And then about 20 minutes later, I got a phone call that said, we made a mistake. We actually dozed her for a friend's snack count, but your daughter did not actually eat anything.

Scott Benner 1:03:47
Oh, I have another episode coming up about a camp. Oh, my God, where the kid was crying for three solid days sick in DKA because they weren't giving her enough insulin. Oh, boy, she finally just cried so much. Somebody actually let her somebody called her mom for it, because they weren't supposed to call the parents, yeah. And then later, in hindsight, they find out that, like every stop gap that was in place at this I'm not going to say the name of the camp, but respected diabetes camp, okay, oh boy, okay, every stop gap they had in place to stop these things from happening failed all the way straight through. Oh, wow,

Bridget 1:04:20
that sounds like an expensive lawsuit. Yeah, I don't think that's

Scott Benner 1:04:23
what they're gonna do, but, like, but bear there that happened. So the kids running around like, you know, with, like, ketones and super high blood sugars and all this stuff, sick and crying and and they only like, and they weren't gonna let the kid call, like, she's, like, begging to talk to her family, and they won't. They like, no, it's against the rules.

Bridget 1:04:43
Oh my gosh, I couldn't imagine that. Yeah, yeah.

Scott Benner 1:04:47
So I like everything being written down and planned out and but at the end, my expectation is you're in this on your own, and you you should know the things that you need to do, and it sucks because you're talking about young kids. It's, you know, yes,

Bridget 1:05:01
exactly. And training my kiddos, teachers or camp counselors, whoever the grown up is in charge, I tell them, 504. Is a side. Paperwork aside, these are the two takeaways. One, how to read a Dexcom. If you can interpret that arrow trend, then you can be ahead of any potential urgent situation. And then two, how to treat a low? Treating a low is more, I'm going to say, important, or has to happen quicker than correcting a high. And so with those two takeaways, hopefully families can feel a little more comfortable when their kiddos are away from them, whether they're at school or whether you have a new babysitter, you know, or whether you know. I am trying to think of a different like caregiver situation, but with those two takeaways, how to read a Dexcom and how to treat a low there's a lot more confidence that comes that grown up or the caregiver can have to know that the greatest medical intervention that the neighbor across the street could do while my kiddo is playing in their backyard is give them a juice box. Yeah, it's easy and comforting, as opposed to anything with pokes, needles, syringes. Yeah.

Scott Benner 1:06:16
I would also like to say that my expectation is in most of these situations, it's going to go well enough that you're not going to be in a dangerous situation. But yes, I mean, I put a fairly thoughtful 504 plan in place when Arden started school and they said, No, this is the 504 plan, really, these five bullet points that I actually said to them at what in a meeting. I was like, if you think those five like ideas are going to keep her alive, I'm like, You're You're out of your mind.

Bridget 1:06:49
Oh my gosh. How did they react? What was their response? I

Scott Benner 1:06:53
was a pain in the ass, right? But that's how I felt to them. I made them like, call her down before recess in kindergarten every day and test her before she went out. She didn't have a CGM, like, she would just get a meter test before she went out, that kind of stuff. Yeah. And then after they tested her, they had to call me to decide what to do next.

Bridget 1:07:12
Yes, because we text throughout the day with our school nurse. And

Scott Benner 1:07:16
this I'm old. This was before texting, even though four kids at a store yesterday said, I look like I was in my mid 30s, but that's another story. Yeah. And then I had a timer on my phone because I and if my timer went off and I hadn't heard from her, that was it was beyond the time before recess, so yes, we got behind beyond the time. I called the nurse's office. I've told the story before, but the nurse picks up the phone. I said, Hi, it's Scott. And she goes, Oh my god, Arden, and hangs up the phone. Yep, I get it. She calls back minutes later, hey, I got I just got Arden off the playground. We missed her. You know, some poor kid had like, a problem, like, literally, like, a problem with his heart, and they had to, like, they had to do something. And so it happened right at the same time that Artem was supposed to get on recess. So the nurse never called down to the room. You would say, Well, why didn't the teacher send her? She sends her every goddamn day. How come not because that phone call didn't come so she didn't do it right? And why didn't Arden say something? Because she's five, and so the nurse runs out on the playground, finds Arden at the top of the monkey bars with a blood sugar in the 50s, oh, my goodness. And brings her in and straightens her all out and everything. And yeah, I took that moment, I actually got dressed, went to the offices where the administration was, sat outside of the Office of the Superintendent, and I said, I'm here to speak with the superintendent. They told me I didn't have an appointment. I said, that's fine. I'll wait.

Bridget 1:08:46
I waited in regards to potential homicide.

Scott Benner 1:08:50
So I went in, I laid out everything I had tried to set up with this 504 plan. I actually tried to set it up the year before Arden started, because I knew it was going to be a thing that kind of laughed me out of the building at that point. And I said, this is what I want. Here it is. And it was nothing was crazy. And I said, and it seems like maybe there should be an aid like that, you know, looks in on Arden at certain times, because obviously her teacher can't handle it, and the nursing staff might have a different problem, right? And he said, we can't afford that. And I said, Do you think you can afford it? More or less me suing you till the end of time? And I said, because I'm not a litigious person, I've never actually been involved in anything like that. I It would be my, my joy of my life, to not be involved in anything like that, right? I said, but if you kill my daughter, I have to assume that the sadness and grief that I will feel will only like I'm doing something valuable with it, if I just keep going till I put Arden's name on the front of this building, and this is the Arden Benner high school one day, and I have all of your money and none of you work here anymore. And I said, because I can't imagine that I'm going to be able to get up and focus. Focus on anything else, or you could just pay the aid, and then it was all fine forever and ever after that.

Bridget 1:10:05
Well, I don't know how it compares, to make you feel good about it, or that much worse, but I'll tell you at my kiddos elementary school, when Teddy started there last year in kindergarten, he was the third diabetic within the school. So there were three. And now this year that my daughter's there, there's four. Well, because there were three last year, the school did hire an additional part time nurse, and that nurse was at the school from 10 until two, because that runs the gamut of NAS times through all lunches,

Scott Benner 1:10:39
and then probably a little bit afterwards, after some of the Yeah, actually, it does actually

Bridget 1:10:43
cover Yeah, a little bit afterwards. The

Scott Benner 1:10:46
right thing to do in that situation, like you have a responsibility, you need to have a staff person there to manage that responsibility. Yes,

Bridget 1:10:53
and their numbers are tracked. And now all these details I'm giving you, I'm not saying they're directly in the 504 but I'm referring to it because this is how we manage that the day to day routine. I really hope that the day to day is boring, and so we spend the majority of the 504, on those potential situations, or emergency situations or field trips, you know, like something that's an anomaly, but talking about these details and referencing what we do with my kiddos, I hope we'll just help other parents. And so there is an actual school nurse iPhone, and so the nurse has all four diabetes on that school phone, so she doesn't have to follow on her personal phone, you know, and basically keep it within the four walls of school. We text when they arrive. I say they're in. We text when they leave, and I say I got them so that she knows when she's, quote, unquote, on and off the clock with my kiddos in particular, and that is how we best keep them safe and healthy just real quick. In regards to the field trips, we have a written in that I, as the parent, either myself or my husband, we have the right to first refusal to not go on a field trip. It's always assumed that we will be attending the field trip. My first grader, he told me he didn't want me to go with him this year, and so I didn't, but that meant that the part time nurse did go with him, because he always has to have someone, obviously a grown up, to take care of him, and so that instance is also written into the 504 I really could talk to you forever, Scott. I feel like it's the best celebrity encounter of my life. That I just want to mention one other thing in the regards the 504 plan, as we talk about lockdowns on different drills. There, typically with schools, is an evacuation site. And when I talk to other parents about this, they are clueless, and then so appreciative. If there were something horrible that happened at a school and they needed to remove the children, not just, Well, yeah, like if there were a true fire, not just a fire drill, but a true fire. And then you gotta go pick up your kiddos. There's not gonna be a filing through of the school grounds, find out where that evacuation point is for your child in their school, and potentially put a go bag at that location for our kiddos. It's like a furniture store, and so I have a mini backpack there, you know, talking with the store manager to say, you know, this is my kids names. This is where we can put it. And so if there is an emergency and there were a fire at my kids school, I could even get in touch with the local fire department to say, Hey, I know this school is evacuating. To the furniture store. Please make sure whatever is needed, you know. And again, that's if there isn't a grown up around or something, can't

Scott Benner 1:13:46
I think somebody's gonna think that sounds crazy, but that seems brilliant to me. Yeah, that's awesome. You don't know until you don't know, Yeah, isn't that interesting? Oh, what a great idea. Oh my gosh. So

Bridget 1:13:57
that's just one other important point, yeah, that I wanted to mention, because again, the day to day, hopefully, is boring, but there are those other situations that if we are the if we are over prepared, we can feel that much more happy and secure. Now,

Scott Benner 1:14:12
I mean, I've told people every year through entire time Arden was in school, like, I know this all probably seems like insane. I was like, but we're not prepping for the things we expect. We're prepping for the things we don't expect. Yes, yeah, it's the truth. Yeah, yeah, most of it's going to be okay day to day. We've got that all kind of worked out already, like we're trying to be ready for the things that you know are just going to surprise the hell out of you. Yeah, yeah, that's it. Yeah. I'm glad you think of it that way, and I like you've raised an attention to it too. Thank you. We were trying Now you sound completely reasonable till you said I was famous, and then that part you sound you sound a little silly, but, but other than that, you sound perfect. Got it? That's very nice of you. Okay, listen, I this was terrific. Did we not talk about anything we should. Have

Bridget 1:15:00
we touched on so much even drying parallels, Arden, to both of mine kiddos is radically helpful for that day to day, what wool and T 1d looks like can look like as they grow up, and it's wild for me to, you know, think that far down the road with my kiddos, as you know, like I'm texting with the nurse right now about snack time and who needs what. So it was really great to talk with you.

Scott Benner 1:15:32
Oh, I appreciate that so much. I enjoyed it as well. Well. Thank you so much. No, I appreciate you doing this. Thank you. Will you hold on for a second for me,

Speaker 1 1:15:39
absolutely. Thanks. This

Scott Benner 1:15:48
episode of the juice box podcast was sponsored by us, med, us, med.com/juice, box, or call 888-721-1514, get started today with us. Med, links in the show notes. Links at Juicebox podcast.com. This episode of The Juicebox Podcast is sponsored by the ever since 365 CGM system, one year one CGM. That's the ever since 365 learn more and get started today at ever since cgm.com/juice box. Hey kids, listen up. You've made it to the end of the podcast. You must have enjoyed it. You know, what else you might enjoy? The private Facebook group for the Juicebox Podcast. I know you're thinking, uh, Facebook, Scott, please. But no. Beautiful group, wonderful people, a fantastic community. Juicebox Podcast, type one diabetes on Facebook. Of course, if you have type two, are you touched by diabetes in any way? You're absolutely welcome. It's a private group, so you'll have to answer a couple of questions before you come in. But make sure you're not a bot or an evildoer. Then you're on your way. You'll be part of the family thinking about getting an algorithm pump. Don't know where to begin. Juicebox podcast.com up in the menu, click on algorithm pumping, and you're going to get a long list of a lot of episodes that will help you to understand better Juicebox podcast.com Find algorithm pumping. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com, you.

#1387 Type I Don't Know

Derek was diagnosed as T2 and then T1 and then T2 and maybe T1.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Welcome back to another episode of The Juicebox Podcast.

Today. I'm speaking with Derek. He was diagnosed as a type two originally, then he was re diagnosed as a type one, but then again, re diagnosed for a third time as a type two, but then he went into DKA after ACL surgery, and they think he might be a type one. You're gonna find out when you listen. It's a lot. 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. Hey, if you're enjoying the podcast, there's a couple of things you can do that would really help subscribe or follow in an audio app, like Apple podcast, Spotify, or something like that. You can follow the private Facebook group. You can follow the public Facebook page. You can follow on Instagram, on Tiktok, you know, on social media in general, you can tell someone else about the podcast that would be huge, but mostly subscribing and following that's the way to help. Also, if you need something that we have in an ad, like an omnipot, or, I don't know, ag one a cozy Earth sheet. Doesn't matter to me. If any of that stuff seems attractive to you, using my links or my offer codes really does help support the show. Thanks so much. I'm gonna get you to the show now.

Today's episode is sponsored by Medtronic diabetes, a company that's bringing together caregivers and parents of children with type one. Later in this episode, I'll be speaking with Sarah, Mom of Jackson, who's an active 10 year old boy with type one Sarah is married with two children and a recruiter at a law firm. Thanks to Medtronic Sarah and her family found the support of the Medtronic caregiver community valuable in their journey. Did you know if just one person in your family has type one diabetes, you're up to 15 times more likely to get it too. So screen it like you mean it. One blood test. Can spot type one diabetes early. Tap now talk to a doctor or visit screened for type one.com for more info.

Derek 2:13
My name is Derek. I have been a diabetic since August of 2009 I have spent the majority of my life and my career in the banking industry, and I have a wife and two boys. I love being a diabetic in the sense that it's a mystery that I always have to figure out, but at the same time, it is somewhat of an emotional weight that I've also had to deal with. And I guess I like to talk to others about being a diabetic as well.

Scott Benner 2:53
Oh, they are in the right place. So 15 years ago you were diagnosed. But How old were you? Then

Derek 2:58
I would have been 2929 39

Scott Benner 3:02
Okay, so you're in your mid 40s now, right. Okay, any type one in your extended family,

Derek 3:10
not at the time that I was diagnosed, my mother, I want to say, about a year after I was diagnosed, she was diagnosed with type two, and then after no medicine worked, I believe she was re diagnosed as a type one band

Scott Benner 3:27
wagon jumper. Okay. How old was she when that happened,

Derek 3:32
she would have been around the age of 70. No kidding, 6870

years old, yep. How long ago was this? This would have been 2018 I believe she with us still.

She is, yes, fortunately, she she has a a crazy story about how she discovered on accident through a completely different issue that she had several aneurysms that affected her heart, in and around her heart, and she had to have emergency surgery to to get rid of a couple of aneurysms that the doctors still to this day don't know how she made it, because she was just that close.

Scott Benner 4:18
It was so bad. Did they tell her were, were those aneurysms from diabetes? Or did they not say they said it was auto immune? Yeah, the aneurysms were, yeah, it was. It was an offshoot from something else that was auto immune going on with her. So, yeah, I'm asking the internet, hold on a second. Yeah, auto immune aneurysm occurs when the immune system mistakenly attacks the blood vessel walls. No kidding, yeah, leading to inflammation and weakening the vessels. Yep, vasculitis, yeah, that's what it is. What they called it, huh? Sim. Symptoms of an aneurysm caused by an autoimmune inflammation can vary depending on its location. Common symptoms include localized pain, fatigue and sometimes visible pulsations in large arteries. Oh my gosh, an aneurysm ruptures. Yeah, we know how that goes. Wow. Yeah, no, yeah,

Derek 5:14
the doctors, yeah. The doctors pretty much said, like, all she had to do was just like, cough the wrong way. And the aneurysm could have completely, you know, exploded. The aneurysm was big enough to the point where it completely filled her chest cavity before they did surgery. So

Scott Benner 5:33
pain is how she figured it out. Yep,

Derek 5:35
little bit of pain. However, she went into the hospital for something completely different. They took like X rays, and the doctor comes back and says, Hey, did you know that you have an aneurysm at, you know, close to your heart. And at the very, very top of the X ray, there was, like this, little like aneurysm, bottom of an aneurysm that showed and that led to follow up appointments with a heart doctor. They did more tests, and they were like, oh, boy, you need to, like, go to the hospital, like,

Scott Benner 6:10
right now. So are you saying that the X ray tech caught it by mistake, just a little piece of it? Yeah? Wow, that's some good luck. Yeah? Well, I have to tell you, Derek, I seriously. I think I say this more than I expect to, but you've come on here and said something I've never heard before, and I think you're going to say something later that I've never heard before as well. So this is interesting. Okay, so your diagnosis happens. How? What do you what are your signs? What gets you to the hospital, etc?

Derek 6:39
In the summer of 2009 I started drinking a lot of water, like excessively, and then I started getting cloudy vision, and from there, just kept on getting worse and worse and worse, and then the extreme tiredness. All the time, I would go to work, come home, eat dinner, go on the couch, sleep all night long, get up, go back to work. That that process happened for probably two to three weeks, at least on end. And then I went to the doctor, and I said, Listen, this is what's happening. I want some blood tests. And said, Fine. Then Several weeks later, after I called my doctor and said, Hey, where are these what's going on? And the nurse said to me, listen, we'll have the doctor call you back, we found something like, okay, great. So yeah, the day before I had an appointment with my doctor, I was in a music studio to record a project with a singing group out of my church. I come out from about a six or seven hour session, I find out that my mother is in the hospital with something that almost killed her. I think it was an infection that was close to her brain, so they basically just caught that in time. Came home that that following morning, I went out to my car, found out that my car had gotten broken into, and I had unfortunately left my wallet in the car, and someone took my wallet, tried to charge about $10,000 worth of stuff on it, got away with a lot of it. And then I went to my doctor, and I'm telling him everything that happened to me that day. He's like, Well, I hate to make your day worse, but you're a type two diabetic.

Scott Benner 8:37
I don't even know what to do, other than laugh. That's horrible. No,

Derek 8:41
I look back on it now and it's, you know, it's like, how do you explain? I don't want to turn into one of those people that just, like, tells all of your problems to somebody else, and they go, okay, and like, never, they never want to deal with you again. But it's almost comical, some of the things that, like my family has been through health wise, no kidding, you know. And so from that point on, like I didn't anything that my doctor said after that night, I asked him, like, three times, are you sure I'm a diabetic? And he said, Yeah, my fasting blood sugar was 303. And I have a sneaking suspicion that I probably had some form of diabetes, probably back from my college days when I was in college, because I just remember going to, like a weight room in college, going around campus, and just after, you know, physical exertion, just becoming really, really, really, really tired. And after certain eating, certain things, just becoming really, really tired to the point where I was like, I had to lay down. So that's. That's the diagnosis story. Wow,

Scott Benner 10:01
geez. Getting older means a world of change, but some things still stay the same, like being at risk for type one diabetes, because type one can happen at any age. So screen it like you mean it, if just one person in your family has type one, you're up to 15 times more likely to get it too, and 50% of type one diagnoses happen after the age of 18. So screen it like you mean it type one diabetes starts long before you need insulin, and one blood test could help you spot it early and lower the risk of serious complications like diabetic ketoacidosis, known as DKA. So don't get caught by surprise. Screen it like you mean it, because getting answers now can help you get prepared. The more you know, the more you can do. So don't wait. Talk to a doctor about how to get screened. Tap now or visit screen for type one.com, to learn more. Again, that's screen for type one.com and screen it like you mean it. This episode is sponsored by Medtronic diabetes. And this is Sarah. Sports

Speaker 1 11:11
are his life. He was nine years old. He was just starting to develop his own personality and his own passions and his own independence, and instantly we were afraid that that was going to be taken away. It was a very scary time for me. I would say probably the first couple weekends, there was a lot of fear about what happens if I go low. Obviously, now that we're on the Medtronic technology, what we do managing his diabetes during athletics, has changed drastically. The Medtronic technology that we are using has almost eliminated the fear I have while my child is playing.

Scott Benner 11:44
As far as community goes, have you met other people with diabetes? What's some good advice you've gotten from them? I

Speaker 1 11:50
have met so many people with diabetes. This summer, I had the opportunity to meet others that are using electronic technology, and I feel like we have built such a strong connection because we speak the same language, we don't even have to say what we're going through. I have good friends that are Medtronic mamas that I can reach out to that have been incredibly helpful, and then our Medtronic rep has been phenomenal

Scott Benner 12:18
to learn more about the Medtronic champions community and to find helpful resources and tips for caregivers and families, visit Medtronic diabetes.com/parents-caregivers

Derek 12:29
how do you begin

Scott Benner 12:30
to manage 15 years ago, it's right on the cusp of like, did they talk to you about a pump? Was it MDI? At first, they

Derek 12:38
gave me a meter and gave me Metformin, and said, Let's see how you are in a month, because they thought you were type two, yes, okay, right? And I went through, like, the beginning stages of metformin, how it's wonderful on your GI tract, and it lowered my blood sugar a lot, the point where I was mostly in the upper one hundreds. At that time, I went to diabetes education classes about a month and a half after I got diagnosed, I think honest to goodness, Scott, like the one thing that I took away from that whole thing, more than my carb counting, and like everything else that they tell you there is, like, if you don't treat this thing the right way, you're gonna lose limbs. And so for, you know, the next year to year and a half, I'm almost, like, starving myself, because I'm not, like, I don't want to lose limbs. You know what I mean? So it was more out of like fear than anything else, because it's pretty shocking when they tell you that, yeah, sure, I continued for the next couple of years where I was on an increasing dosage of metformin. Switched doctors because I wanted to go on something else, and my doctor retired, so this new doctor gave me Januvia, I pretty much like it had no effect on my blood sugar. I was in the low two hundreds all the time. And then I was able to go to another doctor's office that was in the basement of the my workplace, okay? And there was like a team of doctors that worked there, and they were like, listen, we gotta get a hold of this thing. Because my a, 1c, was anywhere from probably six at good times to maybe like eight or nine in those in those years. So then I go to this new office that's in my workplace, and they gave me farsiga. It worked at first, but. You know, I just again. I could never. I had some side effects from that where I felt like I was dehydrated, a lot. It never, unfortunately, it didn't bring my blood sugar down to where it should have been. Well, what it is right now, tell me if I'm going too fast or not, or if you have so,

Scott Benner 15:21
if you think you had issues all the way back to maybe college even, and they're like treating you like a type two for years, right? And so you're in, I mean, we can surmise from this, you're in the middle of a 10 year long process of like Lata, just a very like type one and a half slow onset of type one diabetes. Is that what you think looking back?

Derek 15:44
I think so, but that's another story we can develop later on in this conversation.

Scott Benner 15:50
So, yeah, so they're giving you other drugs that are helping a little, but then not for long, it seems like, yeah,

Derek 15:56
okay, yeah, Scott, when I look back at it, I think this is a an important point to make with all of this, is every doctor that I saw was a GP,

Scott Benner 16:11
so they never said, go see an endocrinologist. No, no, I,

Derek 16:15
I think, I think I had a doctor along the way that said we're gonna have to put you on insulin. And it was kind of said with like, a frustration, like, I can't believe you're not compliant. Yeah, you're not doing the things that I'm asking you to do. And he was the guy who said, Listen, if you gotta, you gotta start eating, right? And I, and I was, you know, for the most part, I was, and, you know, he's, you know, at appointments, he's saying, Hey, listen, you know, if you go to a Christmas party, for example, instead of eating six cookies, just eat three. Were you eating any cookies? No, no. I, you know, I'm, I'm more of like a bread eater than, like, pies and cookies and cakes and sweet things. So

Scott Benner 17:08
when they say that to you, do you speak up and say, I don't eat the way you're saying? Yeah. And do you get a response

Derek 17:16
most of the time, I get just like this blank stare like, well, obviously you're not doing what, what we're telling you to do. Okay, between the team of doctors that I saw when I started on far Sega, and the previous doctor with genuvia, and then my first doctor that prescribed Metformin, I just I wonder why no one said, Hey, let's try insulin, you know, or let's, let's go to an endocrinologist.

Scott Benner 17:49
Well, I mean, you can see, but I don't know why they don't say go to an endocrinologist. But when they think they're doing they're telling you the right thing, you're ignoring them. That's why your a 1c is higher, right? So you know, if you're not going to eat, right, then we're going to have to give you insulin to bring down your blood sugar. Because you, you know, you can't stop with the cupcakes Derek and so, like, that's the, that's the progression that they go through, not I wonder if I'm misdiagnosing this or right? If maybe I'm not the right person to be involved in this, right? Yeah, right. It happens. So, I mean, dark, it happens to so many people. Yeah,

Derek 18:22
my wife and I often have a conversation about this, based on what has happened in the last couple couple of years that I guess we'll get to but I just, I feel like, you know, when people say that there's nothing wrong with our healthcare system, or we've got the best healthcare system in the world, like, go to another country, and that, to me, likes comes from someone who has no health problems. You know, usually does not. They've never had

Scott Benner 18:55
to have one of these conversations. They're like, everything works great for me. You

Derek 18:59
know, honestly, along the way for me, I'm a very, very optimistic person. Anyone who hangs around me will tell you that, and I'm almost at the point previous to the doctors that I have right now, I just felt like the harder thing to do was to fight doctors and the healthcare system, rather than diabetes itself.

Scott Benner 19:24
You know, tell me why. Though, like beyond this last story, what else are you find yourself fighting with them about you

Derek 19:31
ask for blood pressure medicine to be filled three times, and you go without it for two weeks because no one can figure out how to put the order through. You know, I have friends who have requested refills for certain things and and it's we're going on, like, a month and a half, and they just have to pay for things out of pocket. Here's a good advertisement for the podcast, like, I'm going to talk about the. K I did not know that that was even a thing before it happened to me, and I learned about it mostly through the Juicebox Podcast. No doctor had ever sat down with me and never explained Hey, listen, if you see these symptoms, you need to get to a hospital like right away, until I had, you know, maybe, like, the fourth or fifth doctor, they never really went into what you should stay away from, or what you should eat, not that I'm expecting, like, a whole menu to take home or whatever, but there was never a basic conversation with a lot of these doctors about what to

Scott Benner 20:41
do. So they just told you count carbs, put in the insulin. That's it. Yep, yep. That's it. No idea that, like, this food might be more difficult on your blood sugar than this food, or, you know, you might need a different Bolus thing strategy if there's, you know, this paired with that, that kind of stuff, yeah,

Derek 20:58
yeah. No one, no one ever explained Pre Bolus thing. I discovered Pre Bolus thing through your podcast. Listen, Derek,

Scott Benner 21:05
I'm going to tell you something. I'm aware of this. Okay, I'm not. This isn't lost on me, but it is such a basic idea. I take that you learned it from here, and I think that's great, and I think you're not the only one. I think there's 10s of 1000s of people who have learned it from the podcast, which is great, but it's not like, I'm not over here talking on some high level, like, you know, like the credit I get is just not commiserate with the information that's that's shared. You know what I mean? Like, I'm just like, look, one day I noticed that if I, you know, put my daughter's insulin in a little sooner, it seemed to work a little better. And then I, you know, worked through the steps of that. And here's the way I've figured out how to describe it to you, yeah, yeah. And I'll take all the credit that's due on that, but at the same time, your point, I think, is, how is that even necessary? Like, how is it possible that I'm getting this many kudos over saying, Hey, you should time your insulin? Well, yeah, that's it. It's almost saying, you know, yeah, to

Derek 22:00
go back to your point about stop eating cupcakes. Derek, like one of my doctors was like, Hey, we got to get you into a diabetic nutrition class. And I told the doctor, I said, Listen, I've already been through two of those before. My experience. I don't know about other places, but the I've been to nutritionists at two different practices, and both of them, like did not make any distinction between good carbs bad carbs. What affects your blood sugar more than this and that just carbs. And here's a recipe, and that's it. So I said to this one doctor. I said, Okay, I have to see how much it's going to cost. And I called my insurance company at the time, and they're like, we're not going to cover it

Scott Benner 22:50
to see the nutritionist. Yep, yeah. See what you're caught in is the it's the hey, this person's a 1c. Has been over this for so long, it tells me now to recommend to send them to a nutritionist. You should see a nutritionist, and then the nutritionist goes and does what they do, you know. And by the way, they're great doctors, they're great nutritionists, but if you don't bump into them, then this is the process you go through. Then the nutritionist says some right exactly half ass stuff to you. They're like, Here, try this recipe. And you're like, Okay, great. Meanwhile, you're walking around the back of your head. You're like, I apparently I eat way too many cookies. But I would imagine at some point you thought I did have a cookie once. Like, is that too many? Am I doing? Like, you know, I mean, like, it just Derek, you know what you're describing, right? Yeah, you're describing the fragility of people and their inability to do the things that they've been tasked to do, yep,

Derek 23:42
yep, like my mother, just not to belabor this. But my mother has been to a nutritionist. He's a nutritionist on on a regular basis because she feels more comfortable with this person at the office where she sees her endocrinologist. This person told her, you can eat whatever you want as as long as you cover it with insulin, right? Okay, for some people, you know, certain things may not bother you, but I just, I can't ever imagine telling someone, Hey, eat whatever you want as long as you're in some insulin covers it like so

Scott Benner 24:20
you know what that is, though, dark, like, it's their platitudes, right? They're like, they're, they're surface level statements, and it's not for a bad reason. Like, I can make an argument to tell somebody that, right? Like, because what they really mean is that diabetes is, in your situation, a lot about making sure that you have enough insulin to cover the carbs that you're eating, and they don't want to make people feel restricted. And I understand that even because, you know, I think probably what they've learned is, is that these people have just been knocked over with a new diagnosis. It's already bad, and if you make them feel restricted, they might run the wrong direction and just not do anything. Yeah, so let's drive home insulin covers carbs, which, by the way. Okay, I think that that is the core of how you manage a good a 1c right? Like, sure, there's more to say after that. Like, you shouldn't eat really terrible food. Yeah, right. But I've learned making this podcast, and I think probably the doctors have learned, and everyone else, when you start telling people how to eat, you get involved in a very contentious argument, yeah, you know. And so maybe it's just like, I can't get them to do everything exactly right or exactly perfect for their health. So let me just make sure that this, because I have to tell you, like, that's kind of where I come from, which is like, I don't I can't tell you how to eat, meaning you're not going to listen to listen to me, even if I did, and so let's at least make sure that your blood sugars are stable and in range by using the amount of insulin that is required by the food that

Derek 25:50
you're eating. Yeah, yeah. I kind of come from a family where we speak plainly and truthfully, even if it hurts, you know, I definitely get that. You don't want to upset people that much. You have to talk the truth, right? Yeah, in some way.

Scott Benner 26:13
Well, may I say this, and I don't disagree with you at all, but if we're caught in a situation where we can't get a doctor to say the right thing, or a nurse to put in the right, you know, blood test or or, you know, medication order. We also have to, I think, recognize that as patients, we're also people with our own frailties and shortcomings. And I mean, that's where this problem is. Like my wife works in a job where she's told me that some of the biggest problems they have with drugs is that eventually people take them, feel better and then say, Oh, I don't need these anymore. They don't say, Oh, I only feel better because I'm taking the drug. So they'll get their blood pressure down, but not change anything else about their life, and say, Oh, my blood pressure is good, and stop taking their blood pressure medication. Medication, yeah, and people do that with, you see people with type two will do it. Type ones can't, because they'll, they'll die. But you know, like, you'll see type twos go my A once, he was great last month. So the next one we give away, and then we'll bring it back down again. Like, it's, it's thought of like, for some people, it can be thought of like that medications, that's one of the problem. Like, I don't know if anti depression medication, like, there's arguments about whether it's necessary for everybody that's being given to or not, but you'll see a lot of people be depressed, take the medication, say, Oh, I don't feel depressed anymore. And then the first thing they do is stop taking the medication, yeah, which might be the only reason why they're not depressed anymore. Like, I don't know, like, but that's the world the doctors are trapped in, yeah, you're trapped in a world where doctors don't seem to know what they don't know, and will if everything's not going exactly the way they think it's supposed to go, are very willing to blame you for something. Yeah, and you're you know, and they're stopped and trapped in a world where people don't listen to anything they say anyway, so they just assume nobody's doing anything. Yeah, yeah, true. It's a vicious, shitty circle, is what it is.

Derek 28:05
Yeah, yeah. I truly believe that the majority of nurses and doctors that I have dealt with over the years are great people, like they're doing God's work. However, when you run into someone in the medical field who doesn't care or just refuses to help, it kind of like makes you jaded a little bit about

Scott Benner 28:32
I mean, it has me, yeah, no, no, yeah, I'm with you. I'll go further and say I don't think anyone's trying to do a bad job, whether it's the person coming for the help or the person that's there to give it again. I just think this is what happens like I think people get tired. They things get repetitive. You know, their resources, their own mental resources, are limited. You know, the amount of time they have, or money or energy is limited that goes for the doctor and the person looking for the help, and everyone just sort of says the first thing that pops into their head, and then, you know, the doctor says something, and then you go home and forget it, or you go home and try it and it doesn't work, and now you think he's an idiot. I'm telling you, man, it's the model's bad, and it's not, it's not the healthcare model, it's bad. It's the communication model that's bad. Yeah, yeah. I mean, I put up an episode just the other day where this 19 year old girl comes on. She's got all these different problems, and her life is spinning out of control. Health wise. She's only in college, you know. And so I said, Listen, let's just take the hour go through all your problems, see if we can't figure out at least what's happening to you, and then maybe put together an idea of what to take back to a doctor, and we did that. Now I'm waiting to hear back from her, but you know, as we're doing this, she's, you know, she's been degrading for years, and no one's helping her. They just keep piling medications on her that are causing different issues, and then it just keeps. Anything like that, like nobody attacked the central problem, and she doesn't know how to attack it, because she's 19, and I think that's happening to almost everybody in these health situations.

Derek 30:10
Yeah, yeah, for sure. That's all, for sure. Sucks. It's, you know, it's sad to see. It's really, really sad to see, yeah, especially when the problem, in a lot of cases, is just so simple, just, you know, treating the root of the problem, rather than just, hey, let's throw more medicine at it. Yeah, no,

Scott Benner 30:31
that's definitely going to be what happens is, because someone's going to say, Me, using this girl as an example, somebody put on a proton pump inhibitor for stomach acid. And then that probably caused a B 12 deficiency, and she might have also been anemic because of that. Then they go, Oh, you're anemic. Take an iron supplement, which does not combat anemia. Very right, very well, right? And then she's anemic, and then she starts to feel like depression, and then they put her on an anti depression medication. I'm like, she get her iron up and see if she feels better. Like, you know, like, so now they've got her on a proton pump inhibitor. She's taking iron supplements, B 12 injections, antidepressants, like, blah, blah, blah, blah, blah. And I'm like, I don't know. Like, maybe you could have just tried to change her diet and see if you could have impacted the stomach acid without the proton pump inhibitor. Yeah. Like, it's just fascinating. You know what I mean? So, yeah, oh, for sure. But then I'll take the other side of it. The doctor could have put her on a diet, and she might have been like, Ah, I'm a kid. I'm not doing that. Like, who knows? You know what I mean? Like, dude, I don't know.

Derek 31:37
Well, you don't know why if you don't know what you don't know if you don't try it, right? Yeah, yeah. I don't want to steal my thunder for the future of this conversation, but like lately, I have been trying to eat as natural as possible while still going low carb. And I'm telling you, my numbers are outstanding, like, better than they've ever been since I was originally diagnosed.

Scott Benner 32:07
Oh, of course, yeah. I mean, the less you tax, like, the less you tax yourself with carbs. And you know is going to be, it's going to be less insulin that you need to use, right? So you're going to see fewer spikes at meals. You're going to see fewer lows from insulin like it settles everything pretty well for a lot of people. So well tell me about that. So when did you make the switch?

Derek 32:27
Let me continue with my personal story, because it'll it'll make more sense. I was on Fauci and for a couple of years, kind of had a one CS between like six and a half and eight. Never really got down where my doctors were comfortable with in 2020 I was having some issues with my right knee. I had injured it when I was in high school all these years, you know, with knee problems, and I finally said to my doctor, like, I need to go fix this. And he said, let's go get, you know, some tests done. And nurse called me back and said, we tested to take a look at, you know, your ACL, we figured out that you have been living at without an ACL for 20 years, and also I had some meniscus tears. Had that surgery done in February of 2020. Stopped far Sega. Continued taking FAR Sega, I think, like two days after two or three days after surgery. As a result of that, the doctors think that stopping it and restarting it threw me into DKA,

Scott Benner 33:50
stopping and starting the varsica.

Derek 33:54
Yep, you

Scott Benner 33:56
what else happened around that time, though, like, what other things can proceed an onset of type one, like illnesses, trauma, anything like that.

Derek 34:06
No, nothing. And and my blood sugar, like, about a week before surgery, was hanging around the mid one hundreds. So I can't say, you know, I was, you know, out of control. Necessarily. They think that there was some small side effect with FAR Sega, where if you stop it and then start it again, it puts you into DK, it's, it's, and it when it, when that happens, it's usually very, very, very fatal. So my my wife, rushes me to the hospital within 45 minutes, I went from like just casually throwing up to completely blue and almost dead. Fortunately, I went to a hospital that had, you know, great doctors and nurses. It got better again over the next couple of days. Saw an endocrinologist for the first time in the hospital, and she said, Listen, I've been looking at your numbers and your history, and it's apparent to me that you're a type one diabetic, and so in the hospital, I started insulin. I got a quick like five minute, you know, primer on what insulin is and what to do and how much to take with a sliding scale, all that stuff, and went home after a week and a half of dealing with DKA. Can

Scott Benner 35:37
I read you something very quickly far seega is not approved for use in type ones due to the increased risk of DK in the population. For people with type one diabetes, the use of SGL, 2t L, t2, inhibitors, like fast ecosystem should be done with extreme caution and only under close medical supervision. So yeah, you were on the wrong medication. Yep. Yeah, yeah.

Derek 35:59
After that, after I started using insulin, it was the solution that I had been looking for, you know, for what, 11 years or so, numbers were awesome. I think my a, 1c went from in the middle sevens to like 5.8 or 5.9 I finally found the solution where I could eat what I wanted, a little bit more than I had been eating before. My blood sugar was thanking me for being on insulin. It was, it was a relief. And then in right after that, right after I came home from the hospital, is when COVID started. I did not have an in office appointment to see my endocrinologist over the course of the next two years, they just said, Hey, listen, just have zoom meetings, and that's good enough for us. While I was in the hospital, they did encourage me to see an eye doctor, because they had noticed some inflammation in both eyes. I went to an eye doctor and they saw the inflammation and said, Hey, let's just keep an eye on this. But you know, you're good to go. Went home. In the following weeks, I had an appointment with a virtual appointment with my doc, my endocrinologist, and I said, Listen, I love insulin, but I'm like, gaining a massive medical weight. Like, I weighed about like 200 pounds, and in like, a matter of mere months, I was at like 215 you know, I needed help. So he was like, Okay, well, why don't we try ozempic? So I went on ozempic for about six weeks, and after week number six, I started having a lot of blood vessels breaking in my eye. Went back to the eye doctor, they said that you have retinopathy. I've had retinopathy. So ever since, maybe, like, I want to say, end of 2020 beginning of 2021, I've had treatments for retinopathy

Scott Benner 38:37
as well. Is that the lasers? Or how do they handle that needles? Yeah, which, oddly, don't hurt, right? You know,

Derek 38:47
honestly, a lot of people say that it hurts. It's more of like the doctor trying to keep your eye open. He's the bigger problem. The needle in, that's the larger issue. Yeah, yeah, yeah. It's straight out of a science fiction horror movie. But one of those appointments, when I was at the the the eye doctor, there was a massive jump in inflammation. He said, have you checked your blood pressure recently? And I said, No, not, not really. I just kind of keep track of my blood sugar. He took my blood pressure and didn't tell me what it was. And he's like, do you have someone to take you to the hospital right now? And I said, my wife is out in the car. Can this way? He's like, no. He's like, if you didn't have someone I would call an ambulance for you. So my wife drove me to hospital, and I waited to see someone you know, to tell me what was going on with, you know, my my blood pressure, and this is what I mean about like, the frustration about. Our medical system, right? I They, they triaged me, and my blood pressure was 235 over 140 okay? And then I sat in the waiting room for four hours before I saw someone. Doctor comes in. He's like, Hey, listen, we need to get this obviously, need to get this treated as soon as possible. Spend a couple days in the hospital. So all that to say, I just I wonder, like, the whole starting insulin thing, like, really pushed my blood pressure to where it should not have been, or whether that was a side effect of ozempic, or because I was eating everything that I should have, and my blood sugar was, you know, my a one, Cs were around, like the lower sixes. Did your

Scott Benner 40:53
blood pressure return without medication? Or did it need to be medicated? It needed to be medicated. Let's go back for a second to talk about the retinopathy. So you started a GLP, and then you had, like, a sudden improvement of your blood sugar stabilization, lower blood sugars. So that could lead to something, I think they call it, like early worsening of diabetic retinopathy. It happens like when the, like, the levels drop quickly after being elevated for a long time, and something about that abrupt improvement in glucose control can stress the the blood vessels in the retina, and that can lead to like new or, I guess, if you already had bleeding, increased bleeding. Yeah, one of the reasons why you they can't just blanket, get glps, you know, through the FDA for type ones. Because what about all those long term type ones who have had elevated blood sugars like you for a decade, right? And then suddenly we whip this on. Here you see this significant improvement in your blood sugar control. And then, you know, boom, you start seeing this problem with your retinopathy, so a rapid reduction in blood glucose can definitely temporarily worsen the condition. Instead of like, you would think, just like, better is better, but it it's not like because there's this this time where your body's trying to adjust. Now, how could that impact your blood pressure? Did they tell you the GLP had something to do with the blood pressure, or is that just your concern? That

Derek 42:25
was my concern, and I, I think the reason why I make that connection, too is because I never, like, even with the most basic, like the starter dose, whatever that is for ozempic, I just felt weird the whole, the whole entire time that I was on it, to the point where I told my endocrinologist, I was like, I can't, I can't do this thing anymore, like I would rather, like keep the weight on, rather than feel like I have just eaten Thanksgiving dinner every day, I have a theory that it's a combination between ozempic and insulin itself. Well, I can

Scott Benner 43:10
tell you this, that everything that I know about GLP and anything that I can pull up here in front of me while we're sitting here, would say that the GLP is going to lower blood pressure, not push it up. I mean, you might have been upset while you were on it, or not, like the way you felt, and been stressed or something the whole time, and that's completely possible, but I don't think that functionally, it would have made your blood pressure go up. Okay, so, like, nothing, nothing that I can see there, yeah. I mean, again, yeah, I'm a guy with a podcast, so yeah, grain of salt, moth, it doesn't make a ton of sense to me. So you felt so they put you on what they gave you, ozempic, so point two, five for four weeks. Right then at the fifth week she they put you to point five, yep. And you felt very full all the time. Were you going to the bathroom on a regular schedule? Yes, you are. You were. You were pooping. Okay, yep, that full feeling. Did you ever even get past the part where it didn't even feel like the food was going down when you ate it like my my food felt like it stopped in my chest at first. Does that description ring true with you, or you just felt very full in your stomach?

Derek 44:20
No, you're right. You're right. It it was weird. It was, it was like, I had all the symptoms of acid reflux without, like, without it feeling like I was it

Scott Benner 44:33
was burning. It wasn't burning. Yeah, no, yeah. It slows your digestion down pretty significantly, yeah, if you keep eat like, did you eat through it? Meaning, like, did you take in a the same bulk of food that you had prior? Yeah? Yep, tell you. That's why you felt like that. Yeah, for sure. Yeah. Did you lose any weight?

Derek 44:52
It was more than just a like, a fullness, though it was almost like a like, it made me nauseous, to the point where. Are you are on the verge of being sick all the time? If that kind of makes sense, I just I did not like the experience. No,

Scott Benner 45:07
no. I've heard that from people, but often those people then tell me that they didn't decrease their eating yet. So it's slowing down your digestion, but it had an impact your hunger, yet. Is that about what was going on. Do you think, yeah, yeah. So, yeah, well, that makes sense to me, yeah, was it helping your blood sugar? No, it was not. You didn't notice any, well, any different needs at all?

Derek 45:32
No, you know, I was eating the same and I my my endocrinologist was like, listen, just be patient. And, you know, eventually, you know, we got to get these blood sugars down a little bit more. You know, I kept on waiting for things to get better, and just never happened.

Scott Benner 45:49
Yeah, no, I don't think you i I'm Listen again. I want to say not a doctor, not advice, but I think if you would have eaten, like, physically, less food, you might have felt better, and then maybe you could have stayed on it longer, until it actually started impacting your hunger. And then maybe it would have, like, cascaded in a better way for you. But I mean, if you were having that much trouble with it, then you know, obviously you know feeling better is the right thing. Did you not have you found another way to lose the weight you went low carb. Did that help? Yes,

Derek 46:23
that definitely helped. And that might be a good segue into, like, the the what

Scott Benner 46:29
I was thinking when I said it.

Derek 46:33
I got to the point where I was like, Okay, well, insulin is the number one thing that will keep my blood sugar where it needs to be. I just need to, you know, like alter what I'm eating, like make different choices, you know, and be a good diabetic. At the end of 2021, 2020, beginning of 2022, I started finding myself. So let me back up. I was on a sliding scale. At the time, when I first started with insulin, I was on a sliding scale of five. And so, like most meals, you know, I would take, maybe, like, I don't know, eight, 910, units. At the end of 2021, I started noticing that I had to take a little bit more insulin than than normal, which I know you talk about like there's a honeymoon period with, you know, insulin, and you know, you may need to use more after, you know, a little while after your diagnosis. But I started noticing that, like the insulin, it was like eight, 910, units did not do anything dark.

Scott Benner 47:47
It sounds to me like you were on like, a decade long, slow drift into type one diabetes. Yeah, yeah. Well, eventually your needs went up to because your beta cells probably stopped helping. That's another that's another point that we can get to as well. So pretty much over the course of the next year and a half, every time I saw

Derek 48:10
my endocrinologist, she was like, okay, more insulin. All right, let's bump it up. I had to switch endocrinologists because I had an issue with prescriptions not being filled by the office great endocrinologist, but the office just wasn't helping out. So I decided to switch something that was closer to where I worked. Anyway, I saw a new endocrinologist, and he's like, okay, let's just bump up the amount of insulin. And sometime in the middle of 2022, for meals, I was taking between 40 and 60 units of insulin, okay, my body, I felt like, was shutting down like now, instead of being on one minimum dose for blood pressure, I had increased to the max dose for four different blood pressure medicines. I'm using between 40 and 60 units of insulin per meal. And I told my wife, I was like, I feel like my body's like, giving up. Like, I honestly, Scott, it was at the time where we were seriously thinking about putting a will together, you know, really, you know. And I was like, okay, better get that done. I felt like I was in a slow motion train wreck. I got to the point where, like, it was difficult for me even to walk up the stairs in my house, all of my muscles hurt, like I could not do anything. It was almost like the reverse was happening, where, before I got diagnosed, I was tired all the time, except I didn't have the cloudy vision, but I was dreaming. Drinking a lot of water, like nothing, no medicine, even the insulin, was working for me, it just felt like, just felt like my body was giving up. So one Saturday morning, I'm sitting there in a chair, and admittedly, you know, I'm, I'm, you know, in touch with my faith, and I prayed, and I said, God, I need you to, like, give me answers, because I feel like I'm dying. And I went to Google, did some research, and at the bottom of the very last article that I looked at, which was 10 reasons why your body may not be accepting insulin as well as it should something like that. Number 10 on the list, 10 out of 10 was you may be struggling with sleep apnea, okay? And I finally realized that this was something that I needed to look into, because my wife kept on waking me up while we were watching, you know, we always watch, like murder mystery shows at night and investigations and stuff like that. She would look over at me like from on the couch where I was, like, asleep, but she would hear me stop breathing, okay, and would have to shake me, like, to wake me up, like, because apparently, you know, I my body just like, wasn't breathing properly, because of, you know, whatever was going on, and I didn't know What was going on. So I reached out to my endocrinologist, and I said, Hey, what do you think about a like, a sleep study? And he said, Oh yeah, that's a great idea. So had that done?

Scott Benner 51:53
I'm sorry, just I'm laughing because I'm like, it's so funny. They never have any advice. But then when you say something like, oh my god, it's a great idea. And then later you'd say, you'd say, I learned this on Google. And they'd go, don't Google stuff. Like, well, you're not having any ideas, but okay. And every time I bring you something from Google, you say, It's okay, as long as I don't say it's from Google. But good.

Derek 52:11
Well, the same guy told me to stay away from Google too, as well. So, but he's a good doctor, but yes, he's actually said those same words, oh, I know it goes good. That's fine, yeah. So he said, Yeah, good idea. Get it done. I did an in home sleep study and found that between 20 and 25

times per hour I was not breathing Jesus and like that scared me half to death. So was your weight higher at that point dark, I was probably around 260 pounds. How tall are you? Nine feet tall, though, so it's okay, right, right. Exactly, yeah. How tall are you? I am 510 Yeah. You were heavy. Like, yeah, right, right. Okay.

To try to explain to a doctor that I really am eating what I should, you know, and have this much of a weight increase. It's like, you know, how can I get these doctors to believe me? But can

Scott Benner 53:20
I ask you a question like, forget the kinds of food calorically, do you think you were eating more calories than you needed in a day? Because this is generally how it happens to people, right? They start using their insulin, they're using enough of it, but they're eating more calories than they should. The insulin, of course, is a storage hormone, and so it is properly packing away calories, as you know, fat and other things, and then they gain weight, and they say, I don't understand, I'm eating well, but they're eating too even if they're eating well, they may be eating too much. Is that? Is that happening to you? Because you earlier said you think you were, like, even the on the we go, or on the ozempic, you were still eating maybe more food than you should have for that scenario? Yeah,

Derek 53:59
yeah, for sure. For sure. I think there's a point that you get to where, no matter what you eat, as far as carbs, if you're eating tons of fat, at least for me, like I can see a huge difference in low carb, low fat versus low carb, high fat, also,

Scott Benner 54:20
low carb is low lower calories too.

Derek 54:23
Yeah, true, true. But you know that all goes back to, like, the quality of food that you eat too, you know, and and being mindful of that, but I don't know, I just, I feel like I was trying to do everything that I should have been doing for the most part. But again, this is one piece of the puzzle that I needed that, you know, I just happened to randomly come across. And it's like, okay, I

Scott Benner 54:51
pulled this information together a couple different ways when you first got on so sleep apnea can significantly impact blood sugar control in people. With type one diabetes, the relationship between sleep apnea and blood sugar management is complex. Here's some of the ways, right? So stress hormone response sleep apnea causes frequent pauses and breathing, which leads to a decrease in oxygen level. The body responds by releasing stress hormones like cortisol and adrenaline to wake the person up, to normalize the breathing. And then, of course, those hormones can trigger, you know, a rise in your blood sugar. There's also impaired insulin sensitivity. The constant release of stress hormones due to sleep apnea can make it harder for the body to use insulin effectively, both in people with and without diabetes. For those with type one, this can lead to unpredictable blood sugar levels and increased insulin requirements. Then there's increased risk of nocturnal hypoglycemia. People with type one diabetes, who have sleep apnea, may experience erratic blood sugar patterns at night, including nighttime lows. The body's response to these lows can be blunted due to poor sleep quality, making nighttime hypoglycemia harder to detect and address. This can lead to daytime fatigue and glucose variability, because we know poor sleep causes, caused by the sleep apnea can also impact your blood sugars. And then the last thing it says is that sleep apnea contributes to systematic inflammation, which exacerbates diabetes related complications such as cardiovascular disease and inflammation can also impair glucose metabolism, worsening glycemic control over time, and, as you know, give your mom an aneurysm on top of everything else. Yeah, so that's what I figured out about that an hour ago. And I've been waiting to, been waiting to read that. I feel like I did a good job. So you figure out about the the the sleep apnea, I'm gonna assume they put you on a CPAP machine, but don't they also want to get your weight down.

Derek 56:39
They do. They do so, you know, I have regular appointments with a sleep doctor. After starting CPAP therapy, I felt so much better. It was like, again, it was almost like being re diagnosed with something again, like that feeling that I had after someone was like, Hey, here's insulin. And then I started using it's like, wow. I just would encourage anyone. You probably have disclosures that you have to read, right? But like, I would encourage anybody, like, if you suddenly see an increase in the amount of insulin or blood pressure medicine that you're using, you might want to take a look at a sleep study to see what's happening. You know, the worst thing that could happen is they tell you, Hey, you're sleeping well at night.

Scott Benner 57:28
So, yeah, right, right. Yeah, that's the worst news you could get, right, or the beer. But listen, when I don't sleep at night, when I stop breathing at night, it's because I think Kelly's holding a pill over my face, but, but every time I wake up, she pretends to be asleep, so I can't really catch her. Yeah, right. Well, I'm glad that that helped you. It really did. So, you know, in the end, your fix was you tried a bunch of different things, right? And what ended up working for you was lower carb intake and the sleep apnea machine to help you with this while you're losing the weight. Is there a feeling that you won't need the CPAP machine at at a certain weight, or what do they think about that? Let

Derek 58:05
me, let me take you, like, a little bit forward. Even though the CPAP thing had increased my quality of sleep and I was on insulin, my a 1c still, like, was not where it needed to be. It was still hanging around in like, the six or sevens. Okay? So I had a conversation with my endocrinologist recently and and I said to him, I said, I've had doctors tell me that I'm a type two and a type one, but they've never gone over the specific tests that tells me, like, what's going on with my body? Can we? Can we please, like, run those tests? And so we ran a battery of tests in June of this year, and it came back that I was re diagnosed as a type two in June of this year. Wait, what? Yeah,

Scott Benner 59:04
they did, what? Like a C peptide, or what did they do? Yep,

Derek 59:07
a C peptide. And a whole bunch of other things that I can't remember, but I am slightly on the type two side of things, apparently, with the the C peptide tests and everything else that they said that they saw. So my doctor put me on at the beginning of June, put me on Manjaro, okay,

Scott Benner 59:35
and dealing with that better than you did with the ozempic.

Derek 59:38
Well, yeah, no side effects whatsoever. Good for you. When I feel full, it doesn't come with like a nauseous feeling. And I had an A 1c go from 8.7 at the beginning of June to five. Point six a couple weeks ago. Hmm.

Scott Benner 1:00:02
So wait. So did you have a C peptide test that showed like high C peptide levels? Yes, due to insulin resistance, is kind of what they think of there. And how about did you do any auto antibody testing? I don't think so. Okay, so are you comfortable that you have type two diabetes?

Derek 1:00:20
I'm good with it.

Scott Benner 1:00:23
That's the funniest thing anyone's gonna say to me this week. You know, it sucks, though, isn't it like that, like you were told type two, then the doctor, I mean, I remember back in the story, the doctor very confidently came in and said, No, no, you have type one, and then here's some insulin. And you think, Oh, that helped. So I probably have type one. Oh, wow, yeah. I hate these stories. They have. Listen. People tell them to me all the time. But, I mean, you could definitely ask for auto antibody testing, right, to see if you have, I mean, I can go over them with you if you want. But, like, it's, you know, there's, like, I think the most common one would be the GAD antibody test an elevated level there would, I think, shows the that there's an auto immune response. But your mom has an auto immune issue, which is, you know, makes it something worth looking into. I would imagine, yeah, there's insulin. Auto antibodies isolate cell. What is that? ICA test, it looks at the insulin producing cells in the pancreas. A couple more I could look them up, and there's a newer one, zinc transporter, something. But, I mean, wait, but are you taking insulin right now?

Derek 1:01:33
At my last appointment, my doctor said to me, let's keep the long acting and get rid of the short acting insulin, because I was having lows all the time about a week before that appointment, and he said, let's just get rid of it and see what happens. And numbers were kind of good for about a week right then about a week and a half after that, I had to start using insulin with meals. So generally, between three and five units total at most is what I use for meals. Now, yeah,

Scott Benner 1:02:14
so I would like, if I was you, I would want the antibody testing. Okay, because I would want to know for certain if I have type one or not. Probably an incredible thing, if you were in a 15 year lot of situation, but at the same time, like if that was your situation, you don't want to wake up one day and just realize that you're not getting insulin that you need, and you know you're in DK or have bigger problems than that, right? So, I mean, I would want to at least know the what I'm on the lookout for. Now, I imagine you're wearing a CGM. I am, yeah. Okay, so you're seeing your blood sugar. So that, that, of course, is, you know, kind of helps head that problem off at the past little bit. But I don't know, man like, I would want somebody to tell me for sure. Yeah, yeah, that's me. I've also had people on here who tell similar stories about Manjaro specifically. I mean, did you hear the one guy, 50 years old, diagnosed type one, six years on insulin. They put him on Manjaro for weight, loses a bunch of weight, completely off insulin. His blood sugar still acts wonky, like he has excursions at meals, but it comes back down on its own. He expects that he's gonna have to get use insulin again at some point, but at the moment, isn't even using any Yeah, I

Derek 1:03:25
heard that episode, and I was like, Wow, that feels like you a little bit, yeah, for sure. I mean, like, I've lost almost 25 pounds since the beginning of June. Oh, good for you. My world is completely different now I look back at like everything that happened, like going from using 40 to 60 units of insulin per meal to now only having to maybe use three to five units is like, wake me up from this dream,

Scott Benner 1:03:57
yeah. But there's going to be more stories like yours, yeah, but this Manjaro, I believe, like, like, moving forward, and I hope that doctors forget, I guess not doctors, but researchers. I hope that researchers dig through it and try to make more sense of it than just leaving a person like you or the guy we were talking about before, just going, like, well, it's working. So, like, you'd all know exactly what's happening, and hopefully that will be what happens in the future. But for now, I'm happy that you're better off. I'll tell you this, I've lost 50 pounds, and I'm five nine. So today I think I'm 185 or something like that. I think that's my weight today. And so I started this whole thing at like, 236 I'm gonna tell you I am not too thin. I am not, like, I haven't gotten lost and, like, losing weight or anything like that. I'm just talking about, like, health wise. And you know what my body looks like? You know meaning, where is it holding fat and stuff like that. At 185 I still have weight to lose. I don't have weight to lose. Like. Like people think anymore, but they're still fat on my body. That just is not healthy for me, yeah. And so I maybe I should say I have fat to lose. I know the 25 pounds is awesome, and it definitely is, but wait till you lose 25 more, and you look back on this day and you think, Oh, God, I was so happy when I just lost the first 25 Yeah, yeah. You

Derek 1:05:21
know, the other thing too, Scott, that is is weird is with CPAP therapy, I got the number of times where I'm trying to think of I'm at a loss for what the the exact term is, but the number of events per hour, basically where you stop breathing with sleep apnea that that went down all the way to five, okay, generally about five with CPAP therapy. But since I've been on Manjaro, on average every night is between one and two times per hour,

Scott Benner 1:05:56
so I feel like you lost weight or since you shot it since Manjaro.

Derek 1:06:04
Hmm, that's crazy. The you know, the other thing that I have in the back of my mind too is like, let's say I have all these tests done that definitively confirm that I'm either a type one or type two. If, if they come back and say, Well, you're a type one. I would hate for my insurance company to say, okay, can't be on Jaro anymore, because my mom actually tried to go on

Scott Benner 1:06:30
Jaro as well, but she's a type one, and they told her no. They told her no, yeah, yep, yeah. I see your fear there. Oh, that makes sense too. Hmm. I'm trying to figure out how GLP could help beyond weight loss with with sleep apnea systematic inflammation. So sleep apnea is associated with systematic inflammation. Maybe that's where it could be, yeah, interesting. I can't wait to find out, uh, even just your neck getting, like, losing weight in your neck would definitely help with sleep apnea as well. Yeah, yep, yep, crazy. You don't realize where fat is until, like, until somebody starts talking to you about, like, oh, that's that fats under your muscle and you're like, what? Yep, getting down by my organs. Yeah, yeah. Oopsie, yeah. Oh, wow, man. Dave, you've had a wild ride. Is this pen passed either you said you had two boys, right? Did your boys have any auto immune issues? No

Derek 1:07:31
other than my my oldest has allergy induced asthma. But like, other than that, they're perfectly healthy,

Scott Benner 1:07:39
so I'm glad, well, this is the part where I ask you if there's anything we haven't spoken about that we should have, because this was great. I appreciate you just kind of unfurling the story for me like this. It was awesome. Thank you. But Did we miss anything? The last

Derek 1:07:53
thing that I think is worthwhile is that I especially for someone who is newly diagnosed. I think one of the things that I did not realize at the beginning of my diabetic journey is that you have to make sure that you're in a right place with how you are emotionally. Because this is a disease that can carry a lot of weight. So make sure that you are well and that you watch you know how you are reacting to certain things, like get around people who will support you and will help you, because it's more than just taking medicine in a lot of cases, like I have a great family, I have a good support system, I have good friends that will ask me how I'm doing and offer help and support. And that's important. I just think that you can't ignore the weight of what type two or type one is, and just say, well, that doesn't really matter. You have to address that, you know, as much as you address, you know, taking medicine as well. Yeah,

Scott Benner 1:09:15
no. I mean, the support piece is huge, and having people around you that can support you is great if you don't have that. Reaching out into community to find people can be very helpful therapy if you can't find that, you know? But I think you're right. There's a, there's a weight that comes with it. You can't ignore it, because one day it'll just, it'll just knock you over. Yep, yeah, no, I appreciate you saying that. Very much. Thank you. Thank you very much. I really, I mean dark. I appreciate you doing this whole thing. We didn't even get to talk about all the some of the cool jobs you've had, but maybe another time. Yep, all right, hold on. One second for me, this was great. Thank you.

Sarah's story so genuinely encapsulates the experiences that. So many caregivers go through on a daily basis. Our Juicebox community knows the importance of caregiver support so intimately, and Sarah's story is just a great example of what caregivers go through on a daily basis. To learn more about the Medtronic champion community and to find helpful resources and tips for caregivers and families, visit Medtronic diabetes.com/parents caregivers. Did you know if just one person in your family has type one diabetes, you're up to 15 times more likely to get it too. So screen it like you mean it one blood test can spot type one diabetes early. Tap now talk to a doctor or visit screened for type one.com. For more info, the diabetes variables series from the Juicebox Podcast goes over all the little things that affect your diabetes that you might not think about, travel and exercise to hydration and even trampolines. Juicebox podcast.com, go up in the menu and click on diabetes variables. The Juicebox Podcast is full of so many series that you want and need after dark, ask Scott and Jenny. Algorithm, pumping bold beginnings, defining diabetes, defining thyroid, the diabetes Pro Tip series for type one, the diabetes variable series, mental wellness, type two diabetes pro tip, how we eat? Oh my goodness, there so much at Juicebox podcast.com head up into that menu and pick around. And if you're in the private Facebook group, just go to the feature tab for lists upon lists of all of the series. Always free, always helpful. Subscribing to the Juicebox Podcast newsletter is this easy. You type Juicebox podcast.com into a browser, scroll to the bottom, put in your email address, click sign up. 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. Hey, what's up, everybody? If you've noticed that the podcast sounds better, and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit

Derek 1:12:17
it. You want rob you.

#1386 From JAX to Indy

Stephanie uses a Mobi pump and has had type 1 for 26 years.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Welcome back, friends to the Juicebox Podcast.

Stephanie's had type one diabetes for 26 years. She's 46 now, and she advocates for herself along the way. Today, Stephanie uses the mopey pump, and we're going to talk a great deal about it. 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. When you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. AG, one.com/juice, box, don't forget to save 40% off of your entire order at cozy Earth com. All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com don't forget if you're a US resident who has type one, or is the caregiver of someone with type one visit T, 1d exchange.org/juice box right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward. It will cost you nothing to help. Guys, the end of the year is coming close, and I just want to thank you for another record breaking season of the Juicebox Podcast. Thank you so much for listening, for sharing and for supporting the things that I'm doing here with the Juicebox Podcast and on Facebook. 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/juice box. This episode of the juice box podcast is sponsored by us Med, US med.com/juice, box, or call 888-721-1514, us. Med is where my daughter gets her diabetes supplies from, and you could too use the link or number to get your free benefits check and get started today with us. Med, this show is sponsored today by the glucagon that my daughter carries, G VO, hypo pen, find out more at G VO, glucagon, com, forward slash, juice box.

Stephanie Reiner 2:28
I'm Stephanie Reiner, and I was diagnosed with type one diabetes when I was 20 years old, which was July 5, 1998,

Scott Benner 2:37
9002 1008. 18, and then, like, what? Seven? Almost 626. Years? Are you 46

Unknown Speaker 2:45
Yep, I'll be 47 the end of

Scott Benner 2:47
the year. Me. So what happened? Fireworks, scare you gave you diabetes,

Speaker 1 2:53
right? No, I, I went to Wales on spring break in college that year, and everyone on the trip got sick with some sort of respiratory flu type thing, and no one was diagnosed with anything, and it just lingered. I graduated college early at 20 and was excited. I booked a international tour to be a vocal soloist and the dance captain, and then that was for the fall, and then for the next spring, I was supposed to tour the US singing and acting, and so I just needed to fill the summer. So I went to work at a summer camp in a very small town in Indiana, which I'm from Florida. So I knew nothing of Indiana. That week, I started getting sick, but that week, they made us work in the kitchen, and I discovered it was grade D. Government donated meat. So I was like, this might be why I'm and a friend from Florida had also gone, and he was getting sick too. But then by that Friday, I slept for like 20 hours straight, got up, went to dinner with them, went back to bed, and then Fourth of July, went to a party at someone else's house. Then we went to a concert as I was going to the concert, I hit my head getting into the car, so I had a massive headache. I remember being really thirsty, so I got like an icy because none of the drinks sounded good to me, so lots of sugar. And then I slept through the entire outdoor rock concert. So I slept through the Fourth of July, and then when I woke up on the fifth I could barely walk and was sick, and the previous day's dinner came up the same way, smelling the same way. So my digestive system apparently had already shut down. I was driven to an acute care place where they wouldn't give I was just like, can I please have water or ice? And they were like, we don't have ice. And then me, with a swollen tongue, who can barely talk, proceeded to read them the riot act about as an acute care clinic. They're required to have ice because of the nature of the injuries they deal with. Because I had worked at acute care clinic a

Scott Benner 4:52
previous summer, that's where you went,

Speaker 1 4:55
Yeah. And I'm like, Look, if I can't have ice, I can't have ice. But don't tell me you don't have ice. And all of that's where the. Swollen tongue. So I'm sure it was very easily understood, by

Scott Benner 5:04
the way, had we cooked your tongue? It maybe smoked it for a couple of hours at 225 degrees, it would have been better than that meat you were eating in the cafeteria.

Speaker 1 5:11
Yeah, it was bad. That was about it. They were like, you can have something after you see the doctor. So they gave me water, which you should never give to someone who's that dehydrated that their tongue is swollen, so like, what popsicles I had taken down came right back up, and then they had me get on the phone with my parents, who were in Florida, and I'm just so lethargic and my tongue is swollen that I'm like, I don't even want to talk to them, and I'm like, whatever. I just need to sleep. You guys talk to the doctor. So they decide that I should go to the ER, and I'm still like, if you just let me sleep, I'll be fine until we got to the ER, and there's a nurse waiting outside with a wheelchair. They take me back into a room. There's six nurses and a doctor waiting on me, and they immediately start to work, and I'm like, I'm going to die. They don't care if I have insurance or if I can pay because all these people are waiting. And they immediately started working. And that's when I knew it was serious. I had a really bad headache, and it was my heartbeat was elevated all the what I know now is classic DKI symptoms, but as someone who's danced my whole life and I played a couple of RC sports and intramurals in college, they were telling me that I had too good of muscle tone to be a type one diabetic. And, yeah, yeah, exactly, yeah. What? What type of I

Scott Benner 6:33
mean, you've had diabetes for a long time now. Do you see any correlation between that? No, not at all. But listen, I think it's such a you're not going to say a more damning thing in this entire conversation. Maybe, maybe you will then I knew I was sick when they didn't ask me if I could pay for this.

Speaker 1 6:48
Yeah, that's when it got serious. So they did. They did a spinal tap and they did a CAT scan, all because they knew my blood sugar was elevated. But they were looking for other causes, and they couldn't find another cause. So after several hours in the ER, they moved me up to an ICU, and they decided that I'm so dehydrated that they have to do a central line. But they've never done that on anyone who was conscious, so they are a little nervous, and they keep asking me questions like, what's today's date, and who's the president? Why you have a Florida driver's license. Why are you in Indiana? So, like, my medical records have this whole paragraph about how I just graduated from UF with a degree in psychology and blah, blah, blah, blah, and I was supposed to go on tour, and I'm in town working at this camp and all this type of stuff. And then it's like a patient is amazingly co parent, according to body chemistry, she should be unconscious. So they made,

Speaker 2 7:39
hey, who was the president in 98

Unknown Speaker 7:43
I don't remember. I'm

Scott Benner 7:45
testing your recollection of the moment, not of the President. That's all, yeah, I

Speaker 1 7:49
don't Yeah. I haven't read my medical records in decades. But then they want me to sign a release, basically that, you know, if they kill me doing a central line, it's not my fault. But I'm so out of it and exhausted that I'm like, signing instead of using my hand, I'm like, using my shoulder to move my arm, because I'm just I don't have it in my muscles. And then I look at my signature, and it looks nothing like my signature. So I started laughing, and they all get relieved, and they look at me, they're like, what's so funny? And they're like, talking to me like, I'm five years old. And they're waiting for me to be like, there's purple elephants dancing on your head, you know, because it means I'm about to pass out, and instead, I'm like, well, that doesn't look anything like my signature. So if you kill me, I don't know that that would stand up in a court of law.

Scott Benner 8:28
They're just like, if this girl would just pass out, we could give her this line, yeah, not

Speaker 1 8:32
appreciate that. So then they basically, they're like, Okay, you have to take a deep breath and bear down and don't breathe again, because we're going to do a central line where we go through the muscles of your chest straight into your heart, if you move, you can create an air bubble that would go directly into your heart and kill you immediately.

Scott Benner 8:50
Wait, I could? I feel like you could. I don't want to sign that. Give me that back, right, right?

Speaker 1 8:54
So that's what I did. They just numb. They did a topical numbing. And then you feel everything else, and you just take a deep breath and hold they got the central line in, and then this was a teaching hospital, and this poor resident, I don't know what he was, intern, whatever comes up, and the doctor had sent him to get me a popsicle, because that's all I had been asking for the whole time I was there. And he comes back and he's like, we don't, she can't have a sickle. We don't have any sugar free popsicles in the whole hospital. I've been any names all the floors he's been to. And

Scott Benner 9:26
the doctor on the first floor, I've been third floor. I was on the fifth floor, exactly.

Speaker 1 9:30
And the doctor just looked at him and was and read him the riot act, like, up one side and down the other. He's like, I don't care if it has sugar, it doesn't have sugar. Do you see what we just did to her? We're gonna put her on an insulin drip anyway, get her a popsicle. I don't care what type it is like. So then I wound up in ICU, and by this time, the people who worked at the camp and my friends and all the other counselors were all like waiting outside, so they let three of them come in. At that point, it was already after visiting hours. Hours, but they let them come in, and they're all just like, staring at me. And when all this happened, I didn't know at the time, but my friend from Florida got like, had gone to buy me popsicles and took it back to the camp. And as he gets to the camp, the guy who leads the camp was leaving and was like, why are you here? Stephanie's in the hospital. So they turn around and come back to the hospital. He walks in the ER, as the doctor comes out and goes, Look,

Scott Benner 10:24
if you take insulin or so faucinyas, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with G, VO hypo pen. My daughter carries GE, voc hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people with diabetes ages two and above that, I trust low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, jivo hypo pen can be administered in two simple steps, even by yourself in certain situations. Show those around you where you store GEVO kypo pen and how to use it. They need to know how to use GVO kypo pen before an emergency situation happens. Learn more about why GEVO kypo Pen is in ardent diabetes toolkit at G vo glucagon.com/juicebox, gvoke shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma, or if you have a tumor in your pancreas called an insulin OMA, visit gvoke, glucagon, com, slash, risk for safety information. This episode of The Juicebox Podcast is sponsored by the ever since 365 here's what you're getting, long lasting CGM, one year you're wearing this thing. You don't have to change it. There's one warm up and one insertion a year. So there's not going to be any more wasted sensors. This tiny sensor is designed to rest comfortably under your skin for a full year. The app is designed to work with both Android and Apple phones and Apple Watch. I think you really need to see it for yourself. Ever since cgm.com/juicebox, the ever since 365 is so much different, so much more unique than the other CGM that you're accustomed to seeing or wearing. I really think you should take some time to go to the link and see what it's all about. I'm going to tell you one more time ever since cgm.com/juice box, one insertion a year. Remarkable accuracy, no irritation from adhesives, no falling off, no getting knocked off. It's not often in life that you get a pleasant surprise, but I have one for you today. There are links in the show notes and links at Juicebox podcast.com

Speaker 1 12:43
we don't know if she's going to make it. If there's anybody you should call, you should go ahead and call them now.

Scott Benner 12:48
Your friend who's on a popsicle run was told you weren't going to make it. Maybe, yeah, when

Speaker 1 12:51
he walked into the ER, that's what the doctor told them. And there's like, you start, should start calling people. So he's the only one who actually, like, knows me. Stephanie,

Scott Benner 13:00
contextualize this again, you're in what state and where is your family?

Speaker 1 13:04
My family's in Florida, and this has happened. I am Indiana, Indiana, okay, and this guy who he and I sang in a touring ensemble together and stuff like that, he was working, we happened to choose the same summer camp, which literally is what saved my life, that we chose the same summer camp, and so because he's the one who found me that next morning when I couldn't move, he had gone to get popsicles, was sent back to the hospital, he walks in to the ER gathering with the other people from camp. When the doctor comes out and says, we don't know if she's going to make it or not, you should start calling people. So he starts calling all of our friends in Gainesville. He does not have my parents number, so he does not call them. And then one of the girls who was in a touring ensemble with us calls my parents, and she's hysterical, and she's like, I'm so sorry. Is there anything I can do? And my parents are like, they have no idea why she's so upset, because they talked to the doctor at the acute care clinic who made it sound like it wasn't any big deal, and I would be fine. Yeah. Then they get a call a little while later from the ER doc, who says scale of one to 10, Tim being fatal. We don't know if she's a nine or a 10. You need to get here tonight. So they immediately tried to book flights. There was a flight out of Jacksonville through Atlanta, but it wouldn't get to they would miss a connection in Atlanta and they wouldn't make it to Indiana. There was a flight out of Orlando that they could take, but summer of 98 was very dry in Florida, and we had massive wildfires that the smoke had shut down I 95 so they couldn't get to Orlando either. So they drove the like 14 hours across country, not knowing if I was going to be alive or dead. And that was like 98 when people didn't really have cell phones like that, and cars still sucked, right? Yeah, okay, yeah. So they got there the next morning, and I was conscious, and I. Could talk a little bit, but I was just very weak. And so I was in ICU for a couple days, in a regular room for a couple days, and then they dismissed us. The Diabetes training was awful. I had some lady who was much older than my grandmother talking to me about, you know, doing a syringe and an orange because it feels the same. And then she wanted me to poke her and give her a saline shot before I gave myself a saline shot. And I'm like, yeah, no, I'm I, I will give it to myself. They hired some

Scott Benner 15:32
old lady who's a masochist. They're like, she's like, give me a shot, please. Orange,

Speaker 1 15:36
a couple shots, but I'm not going to give you a shot, lady. And and my skin feels very different than your skin, you know, because of collagen, yeah, so it both feel the same. And I definitely don't want to, like, leave a massive bruise on some random lady. So because I've been pushing through an orange then my mom, my dad, and my dad, once he found out I was going to be alive, your

Scott Benner 15:59
dad was like, I wasted this trip. I took a day off from work go back to Florida

Speaker 1 16:03
because my sister is, my sister's three and a half years younger than me, and so she was, like, in high school at the time, and so she was, like, staying with my grandmother. So my dad flew back, and then mom had to drive me back, and so she was begging them to, like, discharge us from the hospital early in the morning because we had a really long drive. And drive. And of course, we were discharged, you know, in the early afternoon instead. And I had to, like, lay down the entire trip home, because my eyes were rehydrating, so everything was going in and out of focus and was blurry, and it just, it was awful. So I couldn't really help, I couldn't help her drive, and she's looking at a 14 hour drive. I had to go back to school for insurance purposes, so that it because this is before insurance reform. So I went back to school. Just went to community college so that the summer was a quote, unquote summer off, and would still be covered by insurance versus diabetes, forever being pre existing never covered. Oh

Scott Benner 16:57
yeah, you had to keep you, had to keep yourself insured consistently so that you didn't have to go look for insurance again as a type one.

Speaker 1 17:04
Yep. So then I had to bail on the international tour that I had booked and the national tour because they would not allow type one diabetics. What kind of tour at the time, music were you singing? It's like a Broadway style for the international tour. I was going to tour US, Canada, Great Britain and Europe as their dance captain and a vocal soloist. They had never had anyone do that. So we're actually rewriting the roles and the entrances and exits to make it work for me. And then I had to call and be like, Thanks for rewriting it. But I have type one diabetes now, and I have to go back to school.

Scott Benner 17:36
Geez. Yeah, any other diabetes in your family or other autoimmune my

Speaker 1 17:41
dad's side has type two, nothing with type one. I had never even met a type one, and actually, I did not meet another type one for a couple years after being diagnosed, I didn't know of any on my mom's side, my mom did have low thyroid whenever she was pregnant with me, and because of my relationship with an endo later, she wound up on thyroid meds. There's not really any auto immune there. What you always ask is bipolar. I do have a relative who has bipolar, but otherwise nothing, no

Scott Benner 18:16
other auto immune stuff. Yeah. Also, we should be clarifying for people who don't, like, listen, like, like, Bipolar is not autoimmune, but it is very, uh, inflammation related, which is why I always ask about stuff. Plus I ask because so many people come on here, anecdotally, yeah, who have a bipolar relative, and I'm just like, at this point now, I'm like, anybody. I'm so stunned every time someone's like, Well, my uncle, I'm like, jeez, yeah. Crazy. Speaking of crazy, 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 long time sponsors of the Juicebox Podcast. There are links in the show notes and links at Juicebox podcast.com, to us, med and all the sponsors. WILLIAM JEFFERSON, Clinton was the president 98 actually, this, this happened to you pretty much in the middle of the model. Lewinsky. Lewinsky, yeah, yes, that whole scandal, that's crazy. Kept saying popsicles. And I was like, I don't know, like I want to call your episode popsicles, my gosh, so you've had, well, I do want to go back a little bit. So you had to go back to school, but you went locally. It sounds like I,

Speaker 1 19:33
actually, I went back to school in Gainesville, where UF is, because I had been involved in the community there, and there was a dance studio I was teaching at and stuff like that. So, yep, so I went back to community college there, and I basically just took, like, dance and drawing and psychology classes. Do you still do those things? Yeah, I'm a choreographer, and I dance and sing and act professionally. Occasionally. Uh,

Scott Benner 20:01
professionally, occasionally, well, what

Speaker 1 20:03
that means is, I don't, that's I have professional contracts that I do, and it's just for one show, and then I don't necessarily pick up another contract to perform for a while. It has to be something I really want to do to disrupt my entire life. I see for it, because it's eight shows a week, it's

Scott Benner 20:19
just such a fun statement professionally occasionally, yeah.

Speaker 1 20:23
And then, like I do choreo, I'm paid to be a choreographer, and I, depending on the year, I can choreograph anywhere from two to six productions, okay? And then, since insurance reform happened, I no longer have to, like, work corporate, and then quit and go on COBRA for a year and a half before going back to corporate to be on a group insurance plan since that reform I tutor math and chemistry middle school through college. Oh, awesome. That's excellent, yeah, so it allows me a lot of flexibility. Yeah. Are you married? Do you have kids? I just got engaged a week and a half ago? Oh, congratulations.

Scott Benner 21:01
Yeah, no, kids, yeah. Well, look at you being an adult. Are you still in contact with the kid that found you?

Speaker 1 21:09
Not really. I mean, we are Facebook friends. It's not someone that I talk to regularly. You

Scott Benner 21:15
don't get a message every once a while, like, remember that time I saved your life? Yeah,

Speaker 1 21:19
no. It's more like every time July 5 comes around, someone from that camp will talk about, you know, how their life was forever changed, not knowing if I was going to live or die. Type of post happens, and then we all get tagged in it

Scott Benner 21:35
over the day Stephanie just disappeared. Remember the day that

Speaker 1 21:38
Stephanie went in the hospital, and then she wasn't at camp for the next month, and so we didn't have someone to teach drama or to sing.

Scott Benner 21:45
Oh No, kidding. Everything changed for this so everything, really, I mean, changed for you a lot more. But yes, okay, so throughout this time, it's a long time you've had diabetes, I don't know. I think I want to know about the shift between technology. I'd like to know what you've had to do to keep yourself healthy. You know, what are some of the like, rear view mirror things that you can look back on and say, These are the things I wish people knew about,

Speaker 1 22:13
yeah, when I was diagnosed, then they proceeded to give me, you know, like an exchange diet type of thing, where you I had to get up at eight o'clock and I had to take this mix of regular and NPH insulin, and I had to eat this many grams of carb, this many grams of protein, this much fat, this much fruit and blah, blah, blah, and on and on. And then at a certain time, I had to eat lunch, because that's when the insulin was going to hit, Ready or not, and there were certain things I had to eat. Then I had a choice. Around three o'clock in the afternoon, I could do a snack and eat dinner later, or I could plan to eat dinner earlier, and that would be a shift in my dose according to what I chose. It was not convenient that that shift happened right before, like a jazz class. So I'm like, shoving peanut butter crackers in my mouth to be able to go dance, and then I was required to, you know, eat a yogurt or something like that before I went to sleep. Every night, as a 20 year old, I would have to get up at eight o'clock every day, regardless as to whether it was the weekend or not, because of my insulin. It was difficult dating because it's like, Hey, I we need to go eat at this specific time. And these are the things that I need to eat, which, by the way, doesn't line up with any single menu item. So it's like, I'll take this entree and then I also need this side with this and this. And so I tried to follow it pretty exacting, but it was the most frustrating thing. And I had no hunger signals anymore, unless I was going low really fast and would shake.

Scott Benner 23:54
Is that because you were eating so frequently, you think,

Speaker 1 23:58
or like, hunger signals? Yeah, yeah. I have no idea, like, it got to where they'd be like, well, what are you hungry for? And I'm like, that. She said, I'm not hungry. I'm eating because I'm required to eat. I no longer, like, craved a pizza or a burger or something like that. From time to time. Has that

Scott Benner 24:12
gone away or changed? No, no. Arden talks about that, yeah,

Speaker 1 24:16
no, not at all. So it's the type of thing where it might be once every three or four months, and I'm like, Oh, I just really want a burger. And if I'm I've already planned to go out with friends and they're getting something else that's great. You can get whatever you want, but I'm gonna go to this place and I'm gonna get a burger and then I'll meet you, because I try to, like, reinforce the hunger signals that I have, yeah?

Scott Benner 24:35
But you try to, you try to pay your body back for telling you

Speaker 1 24:38
something like, yeah, thank you for actually communicating. Let's continue this. Here's the cheeseburger

Scott Benner 24:42
us for great a, exactly great a, by the way,

Speaker 1 24:46
that's right, no more government. Government donated junk. I, by the way,

Scott Benner 24:50
I have to tell you, I looked into it. The the D rating is not how they grade beef. But still, I like, I like the visual. Wait a minute. Hold on, I have a question. So you were like, as a young person, following this super strict schedule, and you were actually following it, right? So to the detriment of what it sounds like is your personal life and perhaps some of your happiness, but you followed it. Did it pay you back? Were you getting the health results that that you wanted?

Speaker 1 25:18
I didn't even know. Like what the health results goals were like when I came back to Indy, to Jax from Indy, I met with an indo and it was not good. Like, the first thing she said is, like she ranted to me about how I could never get pregnant until I had had a normal a 1c for at least nine months. And she literally meant a normal, as in, not diabetic, a 1c which, like in the fours, yeah, like in the Force to blow five, which I'll let you know when I had that. And she just went off about it, and then she turned around. She's like, look, we want diabetes to exercise, but dance is a very unpredictable exercise, so we're going to need to figure out something else for you. And I just stopped her there, and I go, Okay, let's just start again. I said, I'm Stephanie. I have diabetes. Diabetes does not have me. I dance. So you're going to have to find a way to make it work. And because I bucked up and kind of talked back basically, and was like, No, this is what I need. That's why I got the approval to go to school in Gainesville, because I had to have an endo sign off for me to be that far away. It's only an hour and a half away. She was like, as long as you come back every month and a half, I'm every three months, then I'm fine with you going to Gainesville. Wait, diabetes

Scott Benner 26:34
was changed. Was impacting your ability to move around the country if you

Speaker 1 26:38
wanted to. Yeah, within some of the insurance stuff, yes, oh, my God,

Scott Benner 26:43
that's, that's all crazy. You're old. No, I'm just kidding. I know

Speaker 1 26:50
I'm still here, yeah, so, but then I didn't get really education about, like, what insulin does and that type of I just knew you take this and that. So it was the type of thing where, if I went to a party and I wanted ice cream, I didn't have an intelligent way to dose for that, and so I would just randomly dose, and all I had was regular and NPH, and I would just dose for ice cream and not know if it was going to work or not work. And really had no idea that I could kill myself with insulin.

Scott Benner 27:20
I'm so stunned by that idea of that you didn't even know what your goals were. No, did you ever watch that TV show? Lost? You're old. You probably saw it. Yes, you remember they had to push the button. Yeah, totally. It feels like that. Yes, yeah. It just like, do this thing, and you're like, Okay, I'll, you know, I'm 20, but I'll go to, I'll go to the early bird special at 4pm and have dinner then, and, like, not eat anything and only eat this and blah, blah, blah. Why am I? But you didn't know. So you're doing this thing over and over and over again, but you don't know why. That seems very frustrating to me. It was

Speaker 1 27:57
incredibly frustrating. Like, all I and all I knew was about type two diabetes, and like all the complications that can happen because of type two and that's all that I knew. I mean, JDRF existed, but they did not do anything. There was no first diagnosis support or anything like that, where you were no and I think part of it also is because I was diagnosed in Indiana, and then I moved back to Florida. She

Scott Benner 28:21
weren't grounded anywhere, really, either, right? Yeah, I just talked to a guy in his 70, like, a 76 year old guy, and he credits JDRF for really helping him, because when they first started, it was the first time that you could get information that wasn't like at the library, right? And he was like, he's like, that really changed my life. So it would have been nice to have some information as well for you, but I just think I'm gonna go back to this for half a second, then I'm gonna let it go. But I want everyone listening. I don't want to break the fourth wall in our conversation. But wonder about how many things diabetes or not, you're doing every day, and you have no idea why you're doing them. I just think it's a deep question to look at yourself and say, How many things am I just automatically doing that I maybe don't even need to be doing, or could be doing differently or better, or maybe don't even know at all why it's happening. I just, I think it's an, it's an important thing to examine once in a while. But yeah, yeah, for sure. Okay, so you're out there with your ice cream, just winging it. Does this go well, mostly? Or Yeah, it did,

Speaker 1 29:25
yeah, it went pretty well. Yeah. It was a frustration. And you know, I would get gigantic black bruises where I had nicked a vein or artery or whatever. You

Scott Benner 29:36
should have stuck the lady in the hospital. You would have learned,

Speaker 1 29:38
well, can't help it when you hit a blood vessel, which you know is more noticeable when you live in Florida and you go to the beach all the time and that type of a thing. But you were rejecting a lot. You're saying, Yeah, well, I only, and there was no pump option for me at that time. And then so that was like a year, and I taught dance, and I and I. Went to community college, and then I got a job back in Jacksonville, where I was a part time administrator for an arts institution, and then I taught drama and dance there so that it wound up being full time between all the hours, so that I qualified for their insurance. And that made me switch to Mayo in Jacksonville, and that endo told me, because I was asking about a pump, he told me not to even consider it that the pumps were not good enough and diabetes would be cured in five years. That was back when you were 20 that was when I was 21 Yeah, that was a 99 Okay, yeah, you know, and so I'm, I'm testing my blood sugar tons. And you know, anytime that I'm dancing, I'm testing before I'm dancing, and then if I feel shaky during dancing, you know, I would check it. But really, for the most part, like I was probably coasting a little high and didn't know any better, didn't know kind of what goals I should have pre and post exercise and that type of thing. Because basically they just looked at my numbers, like, yeah, you're doing fine. And by doing fine probably meant that I was like, 6.8 to 7.2 on a 1c Yeah, with no CGM and no

Scott Benner 31:13
pump and back then, no idea if you're like, bouncing up and down or anything like that. Right?

Speaker 1 31:17
Standard Deviation doesn't exist into that. And then I moved to Dallas Fort Worth. I dance part time with a professional dance company, and then I was also working corporate, and my indo in Dallas was phenomenal, and they were involved in a ton of research. And so literally, the day or day after that, the 24 hour insulin and short acting insulin became approved in the US I had it. When was that? That was like, in 2001

Scott Benner 31:50
ish, only three years until the the cure. So you were probably right. Did you actually live thinking that that, oh, this will be over in five years? No, okay, because,

Speaker 1 32:00
and that's more of a personality thing, it's like, I can't, like, I'm not banking on anything right out there, as you know, a constantly moving target, like I'm doing the best that I can with what I have right now to set myself up for what I want to do. And so a lot of it was fighting against the current of, no, I still want to perform, I still want to dance. I still want to have that option. Because everything that they wanted me to do, from from an endocrinologist appointment was, please, just have lived the same life every day and like it was a Groundhog Day is was the solution, so that your life is completely predictable. And I'm like, That's great. That does not work for me. Personality wise. I like things that are spontaneous and changing and shifting, and I like that energy and interaction, and so I want to have that flexibility, besides the fact that, yes, I dance and do choreography, and sometimes, if I'm teaching a class, I'm dancing the whole time, and sometimes I'm teaching a class, I'm dancing very little, and I'm just doing small corrections. And yes, that is more difficult to manage, but it's what it's worth it for me, and I want to do it. And so that has been a big part of the fight throughout, is to to have flexibility built in to my diabetes management. And so I had to, you know, push against endos. That endo was great. Unfortunately, a year later, well, so I guess that was around 2000 because then 911 happened, and the company I was with went through layoffs, and I went in the third wave of layoffs. So it's like it was on my one year anniversary with the company I had uprooted my whole life and moved to Dallas Fort Worth, and I was there. And so I went on COBRA, which is very expensive, and I continued to do choreography and that type of thing and look for work. And I, in the meantime, I made a dance company, and we danced in Dallas Fort Worth for a while. We toured that next summer. We toured Florida for six weeks, and we went and danced in Norway for 10 days. And then I went back and got a corporate job because Cobra was ending, and I did recruiting. And then I went into purchasing management. And with that insurance, it required a different endo who I had a string of some bad endos in Dallas, Fort Worth. One messed up some medication so bad that they, like, took it out of my record, because it could have killed me, and I don't even remember what it was anymore. Sorry for that little tidbit, just to tease you with and then be like, I don't even know what it was. Um, so I changed doctors. I had found this great one, and he was phenomenal. And then he got stomach cancer, and he had to quit his pack practice. The lady who took over, like proceeded to berate me every time I went in and tell me how, you know I was killing myself, and I was doing this, and I was doing but there was no education that went with it. Trust me, I met with diabetes educators, and they're like, you know how? You know what to eat, and you know what this is, so you're doing fine. The lady her her way. Was to scare and intimidate people, and it was so bad that they, like, they had me go out the back door so that no one in the lobby would see my face, because I had been so angry, like, I cry when I'm angry, and my whole face was red. So they didn't charge me for that. They didn't want record of it. But they pushed out the valley, yeah, pushed me out the back door. They're like, dance away. Stephanie, yep, so and then around, I don't know it's like, 2003 2004 I wound up in the hospital with DKA. I didn't know that insulin that like, I should look at my insulin closely and know that it's not cloudy like, and that type of like, it had been kept it wasn't, it was a new vial, but the vial I got was cloudy, and I didn't know any different, like, I took it into the hospital. So, like I was I went into DKA, but I was treating myself repeatedly, and it wasn't coming down. So when I went in, unfortunately, this hospital typically deals with type twos, and I'm in the ICU, and then internist comes in. He's, you know, treating him, whatever. And then they go to give me a meal, but they're only they give me insulin, and then I eat, and I go to bed, whatever. And then they they check my insulin, my levels, before I go to bed for the night. The next morning, they're checking it, and I realized that, because my blood sugar is okay, they're not going to give me insulin for my meal, but they want me to eat breakfast. And I'm like, No, I can't eat breakfast without insulin. Like, I knew that much. And they're like, No, you have to. And I'm like, No, you don't understand. I can't. And so they're like, it's doctor's orders. Blah, blah is like, Well, I'm not going to eat. And I just, I was like, I'm not going to eat if you won't give me insulin. So then the doctor comes in. He's mad because I have threatened his authority. I don't know. I'm non compliant, clearly, so I literally drew a picture for him. I'm like, okay, so I eat. I eat. Here's the simple carbs, are in and out in an hour. Here's the complex carbs, they're in and out in two hours. Here's your fat and protein. They're hitting about four hours. They stay till about six and then they're tapering off. This is why you want to balance meals, so that you have balanced blood sugar. I was like, however, was like, however, I don't release any insulin to combat this. This is why I need insulin. And he went off, and he was angry, and he's telling and so mind you, at the time, I was primarily dancing, and so he goes off and tells me that the reason I'm in there is because I'm out partying and drinking every night. And he just went on this tirade about, clearly, you know, a a young to mid, 20 something year old woman, that's all she does, you know, and she's not taking care of her body, which, as a dancer, that doesn't quite work. I just looked at him and I said, you're fired. I said, I'll take another doctor

Scott Benner 37:39
so, but yeah, I have to tell you. Like, it's incredibly common to hear from younger people that someone just takes the leap and goes, oh, you know you're struggling or whatever, because you're out partying all the time. Like, were you out partying

Speaker 1 37:52
all the time? No, no, I wasn't. I didn't even drink it's so funny.

Scott Benner 37:57
It happens constantly. Like, you know what it almost is like, like, you know how you kids are like, Oh, great. Just lump me in with everybody. That's fantastic. I

Speaker 1 38:03
told him, it's like, no, I'm I'm a dancer, like, I cannot do that like and and perform well. And he just continued. So I said, Okay, you're fired. So then a little while later, another internist came in, rather hesitantly, like I was going to throw something at him, and clearly had been told I was non compliant. He's like, Well, why don't you tell me what the problem is? And so I showed him. I'm like, here's the graph I just showed this guy, and this is why I won't eat breakfast if you won't give me insulin, because the only normal blood sugar I will have during my hospital stay is in the morning you're going to keep feeding

Scott Benner 38:36
me. Did that help? Did the second person go, oh, okay, hold on, let's get you some insulin.

Speaker 1 38:40
No, you know what he said? He's like, wow. You know this better than we do. We pre we primarily teach type twos. He goes, so why don't we do this? I'll get your body chemistry in order, and you manage your blood sugar. I'll give you, I'll let you dose your own insulin. And then that's when we saw that. It was cloudy. And he's like, we need to get you new insulin. I didn't know because I was like, it was a new vial that came from the pharmacy, but at least you found a reasonable person. Found a reasonable absolutely and so then he's like, Okay, once we get, once I get your potassium leveled out, he's like, I'll write you a note for work that says that you need to be on bed rest for a week, and then that you do half days for the week after that. But he pretty much, he's like, we don't we don't know how to treat type ones. We treat Type twos primarily.

Scott Benner 39:20
I'd like to get a script for bed rest for a week. You think the guy that makes this podcast would let me go? I want to, I'd like a week off. That sounds awesome. So okay, so you found a reasonable person you get your cloudy insulin fixed, etc. That good. That's awesome. These kind of things continue to happen through life with diabetes. Or does it change as you like. Do you find yourself in the hospital over and over again as the years go by? No.

Speaker 1 39:45
The only other time I was in the hospital was a was shortly after I went on the pump with a bent cannula, okay? And that was the only time, and that was an easy fix.

Scott Benner 39:53
Listen, it's an interesting look at what it was like back then. And, yeah, I think because you fought back. And had a tiny bit of understanding. It's, you know, understanding that it seems like you build on your own. It's not like anybody came along and gave it to you. So I think it saves you, because you weren't even in the like the late 80s, you were like the late 90s, and still everything was janky as could be. I don't know that. It's, I don't know. I mean, the technology is better, the medications are better. I don't know if the on the ground understandings any better, but Right, yeah, you saved yourself. You really did. Because if you would have just listened to them, you'd be in a completely different health situation today. Absolutely. Yeah, yeah. If I, if I wasn't the personality that that advocates for myself, I would have been totally in a different place. Yeah, you have no idea. And do you have any complications today? No, well, good. I'm glad for you. But I mean, it's, it's literally, I know too many people were like, Hey, I did what they told me. And, yeah, absolutely, yeah, yeah. Now let me tell you about what it feels like to get a needle in your eye 1000 times, right, right.

Speaker 1 40:59
So then I moved to Indiana, yeah, and that's where Eli Lilly is, and I had a phenomenal indo there. He asked me if I wanted to be on a pump, and I told him what the mayo doctor had said, like, 10 years earlier. And he's like, no. He's like, we need to get you on a pump. And so he's the first and only indo who advocated strongly for me, and he fought with me against Blue Cross, Blue Shield of Tennessee, and I was the first person that got approved for an insulin pump and CGM. You

Scott Benner 41:27
didn't tell them, I don't need a pump. They died. They cured diabetes five years ago, right? Yeah, I'm all good. Like, did you not hear by the way, I don't know that we've ever truly cured anything, anything. Yeah, we eradicate things, usually through vaccines. When you think about what it means to be cured, like, right? Like, you're talking about, like, there's something wrong with me, and then something else is introduced, and now that thing is not wrong anymore and doesn't come back, right? I mean, I think there's, like, certain kinds of cancers that they can they can completely, like, get out of you, like, but I don't know what people think when they think cure. You know what I mean? Let me ask you a question. If they could stick a packet of cells in you that your immune system couldn't get to, and therefore you didn't need, uh, anti rejection meds, and your body just was like, boom, I don't know. They put in some new beta cells. You're making insulin. You're all good. Are you cured? Or do you just not need man made insulin anymore, because there's a device in you, right?

Speaker 1 42:29
Yeah. You know what I mean, absolutely. Yeah. If you're defining cured as the body being restored to how it originally functioned, that's not happening. If you're talking cured in that I'm not needing a synthetic insulin anymore, that's a different story, right?

Scott Benner 42:46
Yeah, and I'm probably like, I wouldn't, no one would turn their nose up at that. I don't think Correct, yeah, it's just the word is, I don't know. I think it's misunderstood, perhaps, you know, to some degree, commingled with other ideas. You know, if you could eradicate my daughter's type one diabetes, but, you know, she still had the autoimmune issue that, like, put her there. I mean, I think I'd take that as a pretty big win, you know, but it's just, it's funny that, like a doctor said to you, don't worry, this will all just be gone soon,

Speaker 1 43:14
right? Yeah, it's like a magic eraser. Don't worry, everything's fine, yeah, oh my gosh. So he just, he fought with me with insurance, and I got Blue Cross, Blue Shield to give me an insulin pump and a CGM. Before that, I was doing a minimum of eight shots a day to give myself flexibility, to be able to dance and rehearse as well as work corporate and eat when I was hungry or not really hungry. But, you know, close to it, versus just eat on a schedule, so to give myself the most flexibility. And that's why he wanted that's why he helped me get a pump. But the problem is I wound up being allergic to the CGM. It was Medtronic. I was allergic to their original CGM, the one that looks like sliced mushrooms. And they couldn't figure out why, and so I just basically dropped, you know, three to 5000 on a useless something, and then I had the pump. It was great. Unfortunately, once it got approved, he died, but endo and I wound up with his partner who had no bedside manner. He's the one who told me that I would be in this horrible position until I learned to say no to people. And I'm like, I don't think you understand. I'm a purchasing manager. I negotiate multi million dollars deals with Exxon and Dao, and I have no issue speaking my mind and telling people, no, wait, what did he think? You weren't sticking up for? He said that I wasn't prioritizing my health, but he didn't ask me what I did or what I didn't he just it was his typical speech that he gives every single patient I found out, oh, he primarily worked with gestational diabetes, and then he had to take over his partner's patients until they could get somebody else in there. And I told him, I said, well, until you see the patient in front of you, and so the one in your head, I'm not getting anywhere. You're telling me

Scott Benner 44:55
that. Basically, he looks up and goes, diabetes, I'll get. Give them this old chestnut and then tells the story,

Speaker 1 45:02
yes. Ah, there you go. Yeah, yeah. So that was that guy. And then I moved back the Northeast Florida area, which is where I'm from, and have been with the same endo pretty much for the last 1011, years. And really, a lot of it at the beginning was just like, I needed someone who would listen and who would validate and would dialog with me and kind of get over the different trauma of the different people who would yell at me as endos. And I'm like, I don't, but you don't understand that's not what this is. And that was great. Now, since insurance has been pushing back on different scripts and stuff, he would do things off label, but the last three to four years, not so much. And so I don't know how much I will stay with that Endo, because you're doing better than 99% of patients anywhere. You know, my A once I have switched over, once my Medtronic was up for warranty, I switched over to tandem. I was on the freestyle for a while because my Medtronic, you know, wouldn't cooperate with anything. So I just did a FreeStyle Libre. And then just by adding the FreeStyle Libre with the Medtronic pump, I was able to take my ANC from a 6.8 to 7.2 and then it dropped down to more the mid six range, 6.4 to 6.8 and then we went to once that was up, I went to tandems pump, and then with the Dexcom and the basal IQ, and then to control IQ. And with that, then I was pretty much maintaining about a 6.2 without a lot of work, awesome, but a lot of it is, you know, I'm tweaking my settings. He's not. He confirms it. And like every, you know, I he only wants to see me, like, every four to six months, because I'm doing it all. But I'm like, Yeah, but I'm still patient. I would like to have someone to dialog this through with and to look at which ways can we tweak it better. I may be doing better than 99% of the people, but that doesn't mean that I'm doing the best that I can do, because I would love to have as close to normal a 1c levels, provided that I'm not, you know, doing the standard deviation game of dropping down into nothingness. That one fascinates

Scott Benner 47:06
me too. Like, you're like, hey, I have a six, eight. I'd like to do better. And they go. A lot of people in this office have a 10. What does that have to do with me?

Speaker 1 47:14
Exactly. That's what I told him. I was like, I said, I'm still paying you for a session to be my doctor, and that means that you have to You're treating me where I am and taking me to the next place. You

Scott Benner 47:25
got to realize he feels like you're a win. Yeah, exactly. You're checked off the list. You're like, Stephanie done. Don't need to do anything very here's your scripts, honey. Get out of here. Yeah. No, no, that's awesome. What pump do you use? Modern day today? Now

Speaker 1 47:38
I'm on the Moby. I went on that at the beginning of March, my tandem pump went out of warranty in August of 2023 and I really adamantly wanted the Moby. I knew it was going to be coming out, so I refused to sign up for a new one. And they're like, No, you can change over for 1000 bucks. I said, or I can stay with this, and my insurance pays for it, so I'm going to wait you out. And they're like, Well, what if your pump malfunctions? You won't get a warranty. I was like, then I'll switch over to prescription benefits and do Omnipod for a while, and maybe I'll come back to tandem. Maybe I won't

Scott Benner 48:11
just, is that just a sales person or a doctor trying to shake you out of that 1000?

Speaker 1 48:15
Doctor, oh, no, not. Doctor, just tandem is tandem constantly calling me every month about my out of out of war, and I just was honest. I was like, Look, I'm going to continue with my out of warranty pump. I'm not going to have my insurance lock me in to this brick. It's not a brick, but what felt like a brick, because when I'm going to perform on stage, where do I put that that doesn't show in a costume, if I'm dancing or other times with you know, if I'm doing more of a stage play, then where does it go in that so that it's not showing and everything? And so I was like, I don't want it. I want the Moby. Can

Scott Benner 48:48
I ask you? So you wanted a small footprint and but you did, but you wanted to stick with their algorithm, because you could have gone to Omnipod. So you but you will like the tandem algorithm.

Speaker 1 48:59
I like the tandem algorithm. It's also with Omnipod. It is prescription benefit, which is a lot more money for me. Oh, your insurance doesn't cover it as well. Yes, because my insurance, my durable medical, is paid at 100% I

Scott Benner 49:12
see, yeah, so Okay, well, that even makes more sense. So it wasn't as much about like the algorithm, as it was about the cost.

Speaker 1 49:19
I knew the algorithm worked for me. So I was planning. And so I'm good with staying with I would have been fine with trying the Omnipod algorithm had it not been cost prohibitive, comparatively, I understand.

Scott Benner 49:29
Okay, so how long you've been wearing it, since March? Can you tell me a little bit about it? I don't know. You might be the first person I've spoken to who's wearing it. What

Speaker 1 49:36
do you think I love it? I mean, it's the same algorithm is the reality. So there's not a big switch for me in that way. The new option is, obviously, it's literally half the size. It's slightly smaller than an air pod case, carrying case. I personally like the clip that comes with it. Some people have trouble getting it in and out. I don't have that issue. I like that. I. Can put it in a coin pocket of my jeans. I can hook it on my jeans. I can hook it at the center of my bra, and it stays, and it's out of the way and it's not visible, because I don't have to ever touch the pump, because everything is run on my phone. I can tell you that, like, the first month and a half that I had it, I felt like I had this irrational anxiety of I had to have my phone up under me and on and fully charged at all times. I had that little freak out type of a thing, but it's not there anymore. I did have some issues with with bent cannulas, or just poor absorption with the with the five inch tubing, because when you go to insert the five inch tutor tubing, when you pull it back, it's much more stiff than any of the 23 inch tubing, so it's easier to dislodge it, or have it slightly crooked, so that when you go to apply it, it doesn't go in straight, and you wind up with a bent cannula. So on my arm, I like I tried wearing it on my arm with the sleeve, because great. I don't have to worry about where I put it in my clothes, inserting it on your arm by yourself with a five inch that was really tight, pulling back, I had a lot of Ben keynotes. There's a massive learning curve for that. As someone who been using the 23 inch for five years, okay, there was a massive learning because

Scott Benner 51:15
so with the Mobi, for people who maybe don't understand, like, you can do it like on body, right? Like, there's like an adhesive sleeve you could put on and then slide it in, and then just use that short five inch cannula, and then kind of keep everything, the infusion set and the pump right in the kind of the same spot on you, stuck to you, not having to clip it to your clothes. But that shortness of that

Speaker 1 51:37
tubing, is tubing, yeah, not cannula, five inch tubing. Yeah,

Scott Benner 51:41
sorry, sorry. So the shortness of the of the tubing is, like, kind of creating, sometimes, like creating a learning curve where you had to, like, really figure out how to put that in straight without bending the cannula. Yeah? Well, and

Speaker 1 51:52
you're balancing, because you have to balance the Mobi on your arm while you're trying to insert it on your arm, all one handed, because clearly, my elbow doesn't go that way up to hold it. Yeah.

Scott Benner 52:03
So are you wearing it with the adhesive sleeve, or do you prefer the longer tubing and just clip it to your clothing?

Speaker 1 52:10
I use the 23 inch most of the time because it allows me to move the pump to wherever I want for whatever I wear that day. So like, if I'm wearing a dress, then I can just pump it. I can cook it into my bra, in the center on the back, wherever I want, and it stays. And I don't have to worry about it. If I'm wearing shorts or, you know, jeans or whatever, I can hook it on the the waistband of that, or to the pocket of that, and it lets me change it around to I want to put it in the back because, you know, I'm wearing something that's more fitted, and so I'm going to hook it to the back of something that allows me to have the option of whether it's seen or not seen, and how accessible it is by doing the 23 inch. When it's summertime in Florida and I am, there's a water park here in my neighborhood. I'm going to go to the water park, especially when I go with like, my niece and nephew, who are like, five and two and a half. I'm going to be going down the water slides. I wear the sleeve and put the Moby in that, because it is water resistant up to eight feet for up to two hours, which is the same water resistance as Omnipod. There's a lot of people in Moby land who are like, you know, it's not waterproof, so you shouldn't do it, and this that the other it's water resistant. I'm not swimming lap, so I'm not as worried about that. But I have also, in this process of being one of the first 5000 in the US to get it. Have talked with their tech support, and I have answered, I have done some troubleshooting questions with them on their training modules and other things like that. And so as a part of that, in talking with their tech people, the tech people are shocked that people are not just wearing it 24/7 in the shower, in the, you know, in the pool and that type of thing that some people are still hesitant about that water resistance rating. And I just think that's the difference is if, if an Omnipod messes up, you just put on a new pod. If your Moby water resistance messes up, you don't know, waiting for a replacement, yeah, and that's the difference, right? Yeah, then

Scott Benner 54:10
that could scare people away. You said a couple moments ago about like you had a feeling that you needed to keep the phone, like, very close. But does the phone? Is the algorithm not on the phone the

Speaker 1 54:21
pump and my CGM talk to each other, and they work regardless. The app on my phone is my visibility into what the pump is doing, and then it's also my place to go in and enter in carbs, you know, shift into exercise mode and other things like that. Which exercise mode. I have a whole different profile for because just shifting into exercise modes with the same insulin correction factor does nothing, because it'll give you corrections and then you wind up plummeting. I also have a tendency to I like the sleep mode for their algorithm, and pretty much run sleep mode 24/7, so. Because I've dialed in my basal and I've dialed in my carb ratios. So that way, if I if I know if I go shopping, it doesn't matter if it's clothes or groceries or whatever, I drop like a rock. Okay, there is no adrenaline, there's no enjoyment for me, and I drop like a rock with that. So I know that, and so I make sure that I don't get a Bolus, and I want to make sure that I run a little bit higher before heading into that. And if I was running the normal control, IQ versus the sleep mode, it does auto Bolus is when it predicts you're going to go over, like 170 so I tend to go for sleep mode. But just because I don't want to have to pay attention to the auto Bolus is before I say doing life.

Scott Benner 55:45
So if I took your phone and threw it out the window, you couldn't Bolus, right? You couldn't see what was going on.

Speaker 1 55:53
I cannot see I did go ahead. There's a one button on the Moby, and you can use it to snooze alarms, which is really annoying that you can't actually clear alarms on it. Just snooze it. You have to clear it from the app, and that's one of the things I talked to them about their training module. Because for the first 24 hours, I thought I was going to throw the Moby off a bridge because it kept buzzing and I kept clearing it on the pump. But you actually have to, you have to swipe left on the app to clear it, so that it won't snooze and go off again another two minutes. But I can, I programmed it so that if I hold it down, I can micro dose. And basically you can decide, like every time I hold it down, that is equivalent to point one units, or point oh, five units, or point two, five units, whatever you want it to be. And you hold it down, and you do that multiple times, and then it mimics it back to you to confirm what the dosage is, and then it'll give it to you, but that's you just giving the insulin, versus actually entering in like, Hey, this is how many carbs I'm eating and and now I can see what my blood sugar is, and this is what the algorithm is predicting. So you're missing that point without the app, right?

Scott Benner 57:01
But the algorithm is still running, yes, but it can't, but it doesn't know that you had carbs if you had carbs, right? So you can, like, test with a meter, like, so if you left your house forgot your phone, you could test with a meter if you had one, and then Bolus for food based on the if you had the button, program to do something, right?

Speaker 1 57:18
Some people choose not to program that button. I don't know why you wouldn't, but I did that as a part of the setup. Okay, it's a it's an option in your setup.

Scott Benner 57:27
Well, maybe for kids, maybe people don't want to, yeah, have them like being able to just be like, hey, insulin. Insulin,

Speaker 1 57:31
exactly. Yeah, interesting. So you like it? Yes, I do like the size makes the biggest difference in the world. And I know that sound it, it sounds minimal to a lot of people, but when it's literally half the size, and I go from everyone seeing it and crazy people asking me if I have a pager still, that type of thing, to where people don't even notice it, it's a big difference. And for me to be able to perform on stage without necessarily like I don't have any issue with my CGM being seen. I don't have any issue with my pump being seen. I talk to people about it all the time. When you're on stage and it's, you know, something said in the 1800s it might pull them out a bit.

Scott Benner 58:13
Yeah, yeah. So it's nice to be able to hide it if you can. Yeah, yeah. I listen, Arden's been wearing an omnipot since she was four, and I still, like, get stuck on the idea of, like, how do you sleep with the tubing? Like, and I'm sure, obviously, it's very doable, because people do it constantly. It's interesting how, like, whatever you're accustomed to the other normal, yeah, and the other stuff seems like crazy, you know, right?

Speaker 1 58:37
Well, with the five inch tubing, I do generally wear it in a sleeve. I did play around with the five inch tubing on my stomach some and, like, if I was going to go to the bathroom, I would just clip it to the bottom of my T shirt, and then it would stay in place. You can also the Moby is so much lighter that if it dangles from it, it does not pull. Oh, okay, and it's not not a deal. It's not heavy, like the previous like the tandem x2 if, if that came unhooked and dropped, sometimes it could pull my sight off because the weight of it pulling and falling. But with the Moby, that does not, that's never right. Problem.

Scott Benner 59:13
Awesome. It holds 200 units. Is that in a cartridge? Or do you have to fill something?

Speaker 1 59:17
You feel it, you can actually see it on the side. This is better than the x2 and that is kind of an all in one thing, the way that they have you filling it. The downside is that it's very visible. So a lot of people are seeing all the bubbles that happen in every pump when the insulin warms up, and then they are they're worried about clearing bubbles, which is totally valid, but you had that same concern with the other pumps, and you just didn't have the visibility into it, yeah. So I make sure that when I wear it, I wear it where the tubing points down, so that the air bubbles are at the top of the cartridge, so that the air bubbles are not getting pushed through my tubing. Does that happen though the air bubbles come through they can, if you wear it the other direction, because the air bubbles float to the top, and so then they can come up. But that's what happens. Than any other pump that they just don't see the pump. Yeah?

Scott Benner 1:00:02
I mean, that's not an omnipot thing. So that again, like, that's the thing I've never had to deal with, yeah, like, priming, tubing and stuff like that. Like, I don't know about that. Okay, awesome. Well, I appreciate you sharing that with me. Thank you. Absolutely. What have we not talked about that you wanted to? I think that's

Speaker 1 1:00:18
pretty much it. I mean, a lot of it, my journey has been insisting that the doctors would have to find a way to make it work, and then me doing the research to say, No, this is possible. Or me choosing like, instead of just doing the four shots a day, I'm going to go to eight shots a day, so that I have that flexibility. And me choosing flexibility over what they felt was safe predictability. But for me, that safe, predictable, every day is the same, felt like a slow death, like I I like to have my days be different, and I like to be able to decide to to go dance or go Kayak or, you know, whatever, do what I want when I want, as opposed to being locked in. And there are doctors who get that, and there are doctors who, when you push back, think you're being non compliant. Well,

Scott Benner 1:01:10
it's a it's a space on their form. They know how to and how to fill that out. She's not listening to me, right? I told her that story that I tell everybody, and she didn't like it. Yeah, have you experimented with different eating styles throughout the years?

Speaker 1 1:01:26
Not really, to be honest, I am, like, ever since I was a child. I am meat driven. Like, what do you want to eat for dinner? If we go out, it's always, what meat do I want? And then the sides I don't really care about that didn't really drive my choice ever so that is what it is. That's the way I've always eaten. Since dosing insulin and all of that, I have tended to eat my vegetables first, and then my meats and then my carbs come at the end. I just stumbled upon that. I know that that does slow the absorption of that carbs and keeps to it minimizes the spike. I did not do that purposely. It's something that that's how I already ate, and it happened to be that it minimizes a spike.

Scott Benner 1:02:16
Interesting, yeah, you tripped on listen to your

Speaker 1 1:02:19
glucose goddess. And I was like, Oh, I already do that, and that's just the way that I eat, yeah?

Scott Benner 1:02:22
Not on purpose, not because someone told you, just dumb luck. That great.

Speaker 1 1:02:27
Yeah, I just felt it's nice when something actually works out on its own.

Scott Benner 1:02:34
Every once in a while, I like to just get lucky, if you don't mind, that's right, I have one, like, final question for you, do you think that the age you were diagnosed at helped or hurt? Like, what did your parents do that thing where they were like, she's an adult, or were they still very involved? Oh,

Speaker 1 1:02:49
yeah, my parents were very like, they were terrified and they were no help, is really the bottom line. Well, it didn't help that there's a lady my mom knows who two of her three kids were type ones, but they were like, they were young, and one was going through puberty, and, like, literally, the mom was sleeping in her bedroom trying to keep her alive. And so my mom was hearing all these horror stories. And then I'm like, in Texas, and I'm like, Yeah, I'm going to get my own apartment. You can't live by yourself. And I'm like, No, I'm getting my own apartment. Like, that's what I'm doing. Like, it's not, I'm not changing everything. Now, don't get me wrong, like, I make sure my blood sugar is fine. I'm going to get my own apartment. And so, like, I would come home and they would make something, and then I'm digging through the trash for the boxes to have a clue about carb counting and that type of thing. And I've been back in Jacksonville near my parents for like, 12 years, and it's really only in the last like four years, so four years out of 26 that they are consistently recognizing that we should keep the carb counts out for Stephanie.

Scott Benner 1:03:57
Okay, they're starting to figure it out now, yeah, that's the fifth coming along. Yeah, you never know. By the time they're 150 they might really have right?

Speaker 1 1:04:06
Yeah, no, but it definitely it was mine. I was the one who had diabetes. I was the one who had to deal with it, and I did. Now, it's also like, I feel like within my family dynamics, it's like, oh, you know, we don't really have to worry about Stephanie. She always lands on her feet. She finds a way to make it work. And so that's my and so with it, with diabetes, it was that I've been interested in dating, like some people, you know, it's like, it's your diabetes. And so you manage it however you do, and you let me know if I need to do anything. And then other people want to know all about it, and some of them want to overstep and and that's been different for me, because, like, my family has not typically been involved in my diabetes, so to have someone that I'm dating involved, it's like learning to let them be involved and then deciding, like, what are the limits to their involvement, and that type of a thing. Yeah,

Scott Benner 1:04:57
that's the thing you've been able to navigate. Okay. Yeah. Absolutely

Speaker 1 1:05:00
with my fiance. He actually, this year was his third year going to touch by type one with me at the conference, and he knew nothing of type one. And then once we started dating, he's like, Okay, so at my place, I need to stock Diet Dr Pepper, honey sticks, Skittles and Airheads, because those are what I used to treat lows, and then the Diet Dr Pepper, what I drink while my body is screaming at me to continue inhaling the kitchen. Instead, I give it diet doctor to calm it down. Yeah, shut up. I'm giving you something. It's, you think it's sugar. It's not really, I like that.

Scott Benner 1:05:36
You're just like, that's good enough. I'll marry you. Finally, somebody, somebody figured it out. So it's

Speaker 1 1:05:41
been, it's been really good. And I get the beginning, he's like, can you eat that? And I would, I'd like, look at him, like, I can eat whatever I want. I just have to plan for it, and I have to dose for it, as long as it's not poison. I'm good, you know. And so, like, for the first year of dating, he'd catch himself, and then there'd be times we'd be out to eat, and so, and I would ask, because someone's like, not sure if they're giving me the coke or the Coke Zero. And I'm like, yeah, no, I need you to be sure it's a Coke Zero. So I'm a diabetic and, you know, and then, like, then, because I said something about being diabetic, when I go to order my food, the Oh, so helpful wait staff decides to tell me whether I should or shouldn't have something. And then, but it's been nice that my fancy is like, no, she can eat anything, you know. So it's nice that I don't always have to be the one stepping in to advocate. So it's been really nice to have someone else who's quote, unquote, in that fight, right?

Scott Benner 1:06:29
I'm not going to waste the insulin or my carbs on regular Dr Pepper.

Speaker 1 1:06:33
That's all No, it's not worth it to me. Yeah. Now there are some things that are worth it that is not one that's worth it for me,

Scott Benner 1:06:39
right? No, no. It makes a lot of sense. Well, Stephanie, I really appreciate you doing this. You are one of the few people that I've interviewed that I've met in person, so that was interesting for me. Normally, I just, I can't even picture the person I'm talking to, but today I could. So this is kind of fun. Thank you. That was good. Yeah, yeah. I appreciate this. Hold on one second for me. Okay, okay. A huge thank you to one of today's sponsors, gevok, glucagon. Find out more about G vo hypo pen at G VOQ, glucagon.com. Forward slash juice box. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com forward slash juice box, a huge thanks to a long time sponsor, ever since 365 learn more and get started today at ever since cgm.com/juice box, 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 long time sponsors of the Juicebox Podcast. There are links in the show notes and links at Juicebox Podcast com to us, med, and all the sponsors. Are you starting to see patterns, but you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, if you're starting to think this isn't going the way the doctor said it would, I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 I want to thank you so much for listening and remind you please subscribe and follow to the podcast wherever you're listening right now, if it's YouTube, Apple podcast, Spotify, or any other audio app, go hit follow or subscribe whichever your app allows for and set up those downloads so you never miss an episode, especially an apple podcast, go into your settings and choose download all new episodes. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast? You want somebody to edit it? You want rob you?