#1595 Shooting Star
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Allison’s 8-year-old daughter, Molly, was diagnosed with T1D last February and is one of only three documented adolescent acute esophageal necrosis cases.
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Scott Benner 0:00
Welcome back, friends to another episode of The Juicebox podcast.
Elle 0:14
Hey everybody. I'm Elle. I've been type one for 25 years, but I just started really getting involved and leaning into my diabetes in January, and I'm just so excited to be here and to tell you guys about it. If
Scott Benner 0:28
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Unknown Speaker 2:01
Ever since,
Scott Benner 2:04
this episode of The Juicebox podcast is sponsored by Omnipod five. Omnipod five is a tube, free, automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes when they've switched from daily injections. Learn more and get started today at omnipod.com/juicebox at my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox
Elle 2:34
Hey everybody. I'm Elle. I've been type one for 25 years, but I just started really getting involved and leaning into my diabetes in January, and I'm just so excited to be here and to tell you guys about it.
Scott Benner 2:46
Awesome. El, you're 25 years into type one. But how old are you? I'm 3737 so you were 12 when you were diagnosed.
Elle 2:52
I was 11, about to be 12. I got diagnosed in March of 2000 and my birthday is in April, so a little less than a month with diabetes before I turned 12. Gotcha, you have kids? Are you married? Yes, I'm married, and I have two children. I've been pregnant three times. I had a miscarriage before I had my first son, and the miscarriage was just due to, like, really uncontrolled diabetes.
Scott Benner 3:13
Okay, let's talk about your diagnosis. Then, do you remember anything about it?
Elle 3:18
I sure do. How'd it happen? So I was a competitive dancer. I literally lived in the dance studio. I was there probably five, six, maybe even sometimes seven days a week, there for hours at a time. It was competitive dance season, and I pretended to be sick because I needed a little break from dance. I just was like, damn, I just want to be home and I want to watch TV and I want to veg on the couch. And I, you know, my parents rule of thumb was, unless you have a fever or you're throwing up, you are not missing school, you're not missing dance. I didn't really know how to fake a fever, so I made myself throw up, and it got me out of dance. So I said, All right, we're going to do this again. And I did it for two more days. And then finally, on the third day, my mom was like, we're going to the emergency room. Went to the emergency room. We were in triage. I'm thinking, this is a field day, like, this is another day off. I'm so excited. We get to the ER, we're in triage. They prick my finger sugar 600 and the nurse is like, Did you give her insulin today? And my mom's like, what the heck do you mean? What is insulin? What are you talking about? And shortly after that, I got transferred to another hospital, and I was there for about two weeks. This was in the two, you know, 2000 so we didn't have CGM, we didn't really have pumps. So I was there for a long time getting stabilized and learning how to eat and inject and check my sugar and all of those things. So do
Scott Benner 4:36
you think, in hindsight, do you think that you felt run down and sick, and the way your brain thought about it was like, I need a break from all this dancing.
Elle 4:46
Well, I definitely had symptoms of type one leading up to my diagnosis, which I think why it was so easy for me to throw up, because I always felt nauseous, I was always tired, I was always thirsty, I was always hungry. I had all the symptoms like they were. Black and White. I even wet the bed at age 11, but my parents were going through a really crazy divorce, so it got overlooked as anxiety. It got overlooked as, oh, she's just anxious about what's going on. Because my parents had just separated. They were living in different houses. It was a huge life change, yeah. So it got it really did get MIS, misdiagnosed and overlooked, because my parents were like, No, something's up. But, like, they couldn't put their finger on it. And I never threw up. Up until that point. I was always nauseous. I always said, Oh my God, my stomach hurts. Oh my god, I'm so tired. But nobody ever took me to the doctor to get it checked out. You know? They were just like, well, you know, her parent, you know, we're going through a divorce. Like, it's probably just that
Scott Benner 5:38
the making yourself vomit. Did you like, have to? Like, how did you accomplish? It
Elle 5:41
wasn't very hard, because I my sugar was so high, and, like I said, I always felt nauseous, so I literally just stuck a finger down my throat and it everything came up. Whatever I had eaten came up. And I don't know if
Scott Benner 5:52
you're looking for a break, basically, yeah, so you fake, literally, you vomit to get a break, and then your mom, like, hey, like, you wouldn't have known at that age, but, like, vomiting three days in a row is very, very concerning. So your mom's like, all right, fine hospital. So you got yourself diagnosed by mistake, by pretending to be sick when you actually really
Elle 6:10
were exactly I always say dance was like my it was my saving grace during my parents divorce, and it literally saved my life. Granted. It was because I felt like I needed a break from it. When I tell you, for our dance recitals, I had like 12 dances lined up. There was some dances I was getting changed behind the stage because I didn't have enough time, because I had to go back on. Like dance was my entire life, yeah, and it literally saved my life. Because even though I needed a break from it, I think maybe subconsciously, like you said, like my body was just feeling run down. And think about it, 600 blood sugar, yeah, pretty crazy.
Scott Benner 6:42
You were pretty beat up at that point. Okay, okay, so now you're out of the hospital, and your parents are not together, and it's 25 years ago. So I mean, what was your management expectations at that point? What were they expecting you to
Elle 6:56
do? So first was nutrition. They took me to a nutrition class while we were still in the hospital, learned to count carbs, basically, calculate a dosage, go through all of that. So we get out of the hospital, and I remember, like, my mom goes to the grocery store, she comes home, like, our first day, our first full day home, and she just, like, lays all the food out on the table, and she starts crying, and she's like, there's carbs in every like, I don't even know what to feed you.
Scott Benner 7:21
I gotta tell you, it's so funny, like, there's carbs, and anything crying happens to everybody, yeah? Like, absolutely, it happened to me in the in the grocery store. I was like, It's okay. We'll go and we'll get something that'll be okay. And then you're walking around, you're like, and there's this terrible feeling of just like, how are we gonna eat any of this? Okay, so you're, I'm sorry. Your mom's your mom's crying around the grocery
Elle 7:40
mom's crying about the food. I remember, you know, like I said, we didn't have CGM, so, like, we would have to wake up in the middle of the night, check the finger, give a dosage. Back in that time, we had a mix mph and n to get a long acting insulin. It wasn't even like, you know, Atlantis or chase, but it was like you had to mix it yourself. So it's like, it's kind of crazy just to see the progression of how things have changed with diabetes. Yeah, it was scary. It was a lot of work. And not too far into my diagnosis, I was 11, turning 12. I kind of had the independence, and my parents just kind of fell off with my care. Honestly, it was like, once they they realized I knew how to check my sugar, I knew how to give a dosage. I knew I had to eat, you know, give insulin before I ate. They kind of were just like, okay, she got it, and that was kind of it. It's kind of sad actually, that I always say, like, I feel a little neglected, and I think that's where the bad relationship with diabetes comes in, because it was always like, in the beginning it was, there was so much care, and then once it was like, okay, she's got it. She's got it. She's confident. She knows what she's doing. It just kind of like, fell off.
Scott Benner 8:44
So how long do you think that took before they were like, Oh, look, she's good.
Elle 8:48
Probably like, three or four months. But I will say I've always been very independent, like, just as a child, like, I always just like, you know, I played by myself. I mean, I have siblings, but I was just always very independent, right? And I had an older sister, who was very like, motherly towards me. So I was very lucky in that sense, that I always had my, you know, an older sister, but probably, like, I don't know, I would say anywhere between three to six months, and it was just, and then you never heard from them again. On it, well, not that I never heard from them, but it was just like, it wasn't a priority anymore,
Scott Benner 9:18
okay, so meaning they thought, like, we figured out the thing we're supposed to do. It's happening now on a cycle. It doesn't need focus any longer.
Elle 9:27
Basically, yeah, it was, like, every three months. How did that leave you feeling horrible? I still to this day, do not have a great relationship with my mom. You think it's because of this? I think it's a big part of it. I personally feel, and I don't want to say anything to offend my parents, but I feel like this happened while they were going through a divorce, and they were very selfish with their divorce, that there was no focus on my health, that it was just basically all of them. But think about it, trauma responses can trigger diabetes, too. So it's like, did this trigger. It is this, like the trigger that happened, so I feel like I have just a bad connection, just to that in general.
Scott Benner 10:06
What do you think your mom would say if she heard you say that?
Elle 10:09
I don't know. Honestly. I mean, I've said it to my dad. Me and my dad are very close, but me and my mom have always had just, like, a really hard relationship, and that's why I say. I don't want to offend her, because me and her still don't really talk a lot, so I don't want to offend her, but now as a mom, I'm
Speaker 1 10:24
gonna get emotional. I'm sorry. Take your time,
Elle 10:29
just like now as a mom, I just don't I feel like the way she was as a mom, has made me a better mom. If that makes sense,
Scott Benner 10:36
okay, is she? Is she like, she's alive, she's well, like
Elle 10:40
she's she's alive. She reach out. Yeah, we reach out, you know, holidays, birthdays, things like that. Lately, we've been trying to connect a little bit, because she's not in the best of health. So, you know, I do try to reach out. Hey, how are you? You okay? I always feel like I was more the parent to a parent, you know,
Scott Benner 11:02
she have anything going on that would cause that she had medical issues when she was younger. She drank, drinking anything like
Elle 11:07
that. My mom was sober all the time, like I think she had a hard childhood being raised, and I think that that was just the only way she knew how how to be with me. Okay, so how old is she now? My mom is going to be 68 I think,
Scott Benner 11:25
okay, 68 almost 70. I don't know a lot about a lot, but I can tell you that you should work on forgiving her and moving forward, because if you don't, she'll die one day and it'll it'll haunt you forever. Yeah, you know, I think sometimes people get confused about, like, you know, what does it mean to forgive somebody? You have to go explain to them what they did so that they agree with you, and then, you know, they say they're sorry. Like, I don't know that. That's how it works.
Elle 11:54
Well, this is my thing. I feel like I need my mom to say she's sorry, and she's just the person that won't Why do you need that just for and you know what? My husband says that too. My husband's like, why do you need her to say you're sorry? What is it gonna change? And I'm like, You know what? Maybe you're right. Did
Scott Benner 12:10
she do it on purpose? Do you think she was malicious? I don't think she
Elle 12:13
was malicious. I think that during my parents divorce, she used my health as a way to, like, kind of hold something over my dad. You know that she's the one doing all of this, like, my dad was involved, but I saw my dad on the weekends. I was with my mom, primarily during the week, so I think it was just like, I remember, like, being diagnosed, and they're screaming in the hospital room at each other, and I'm just like, Hello, can you guys, like, stop worrying about yourselves? How
Scott Benner 12:36
did they get divorced? Was one of them unfaithful? Or somebody crazy, trying to get away from somebody, or Today's episode is brought to you by Omnipod. It might sound crazy to say, but Summertime is right around the corner. That means more swimming, sports activities, vacations. And you know what's a great feeling, being able to stay connected to automated in some delivery while doing it all. Omnipod five is the only tube free automated insulin delivery system in the US, and because it's tube free and waterproof, it goes everywhere you do, in the pool, in the ocean or on the soccer field. Unlike traditional insulin pumps, you never have to disconnect from Omnipod five for daily activities, which means you never have to take a break from automated insulin delivery ready to go tube free. Request your free Omnipod five Starter Kit today at omnipod.com/juicebox Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox type that link in your browser, or go to Juicebox podcast.com and click on the image of Omnipod right at the bottom. There's also a link right in the show notes of your podcast player. When you think of a CGM and all the good that it brings in your life, is the first thing you think about. I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a door frame, sometimes it gets ripped off. I love that the adhesive kind of gets mushy sometimes when I sweat and falls off. No, these are not the things that you love about a CGM. Today's episode of The Juicebox podcast is sponsored by the ever since 365 the only CGM that you only have to put on once a year, and the only CGM that won't give you any of those problems the ever sense 365 is the only one year CGM designed to minimize device frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping, you can manage your diabetes instead of your CGM with the Eversense 365 learn more and get started today at ever since cgm.com/juicebox one year, one CGM.
Elle 14:48
Well, my dad had a drinking problem, and it got physical between them and my mom, not that she's ever said it, but I've caught my mom having so you know, we used to live in the time of like a cordless phone. In a landline. So my mom worked downstairs from our apartment. My family owned a business in town. My mom had the cordless phone downstairs. I had the landline upstairs. The phone rang. I answered it. My mom was chit chatting with a friend, and basically had said that she was unfaithful to my dad. And I heard the conversation, and I just after that, I was just like, wow, you know,
Scott Benner 15:21
so your dad drank, got physical with your mom, your mom then cheated, and then you heard about it pretty much, yeah, okay, and now you're mad at her for cheating on him. Why are you not mad at him for hitting her? I'm
Elle 15:35
mad at both of them, to be perfectly honest. I'm mad at both of them, but my mom has just this way about her that, not that I can understand why my dad would get physical, but it's like she kind of like pressures it and then victimizes it. If that makes sense, I'm not saying what my dad did was right. I'm not justifying that at all, right. But, you know, my mom was a second wife, so she had a lot of you know, my dad loved his first wife, you know, and they just didn't work out. And I just don't think that my dad loved my mom the way he loved his first wife.
Scott Benner 16:07
Oh, gosh, that's all very well, but that's all very like, complicated. It is, it is. So then my point is, you can't go back in time. No, nobody can, right? So you're only all you can do is move forward from where you are. If you asked her to apologize, she'd probably be like, for what?
Elle 16:25
No, exactly, that's what it is, too. I don't even think she realizes the the damage that's been done. And my father has apologized to me. You know, my father's like, you know, I know I made some horrible decisions. Like my dad has. Me and my dad have a great relationship because we've gone through the motions of that, but my mom, I feel like, will never admit that she had a part in their divorce, and I feel like she just thinks like she's the victim, and that that might not be the case. But
Scott Benner 16:52
before you and I started recording, we were talking and I shared with you that I've recently learned that a person who's in the diabetes space, who I think of as like an awesome force in this space, somebody who I'm very supportive of anytime I can be I have a very good feeling about the work that they do for people with diabetes, that I just learned recently, that this person who I have a lot of respect for and have not, not one ill feeling For that person believes that I don't like them, yeah, and therefore then goes around telling people that I'm a bad guy. And so my point is, by sharing that little like, it's not, not a real deep look into what's going on there. But my point is, is that, like, do you remember how you responded to me? Isn't perception crazy? Yeah, exactly. Uh huh. So think about your mom and your situation, and say to yourself, isn't perception crazy? It is, what do you get out of not having a relationship with her? You just get to feel what like you're right.
Elle 17:55
I feel peaceful. I just feel like even okay. So, like I said, me and my mom have always had, like, a very, like tough relationship. So I feel like anytime I give a pass or we patch things up, something happens where she triggers something in me and it I see red and I just want to explode. I feel like loving her from a distance is just kind of the way I deal with it.
Scott Benner 18:21
Yeah. I mean, listen, that might be how you end up dealing with it. I'm not saying otherwise. I would tell you that. You know, you have you said you have two kids. How old are they? Six
Elle 18:29
and two boys, girls. I have one boy who's six and a daughter who's two.
Scott Benner 18:34
Imagine if one day one of those kids talked about you the way you're talking about your mom right
Elle 18:38
now, I know, and that's why I always say, I feel like my relationship with her has made me like a better mom, because I never want that to happen.
Scott Benner 18:45
Ah, but you know who gets to decide if that's true? My children, that's right. I know. Yeah. Wait till they decide. It's a crazy thing. It's a crazy thing. So what's the best bet? Forgiveness? Yeah, it is.
Elle 18:59
It's it's hard to forgive. It's hard to forgive when, and I think that's why I need that sorry, so that I am able to forgive her. But the thing is, I'm not gonna ask for a sorry, but I'll probably never get it, because I don't think she thinks I need a sorry. If that makes sense, it's
Scott Benner 19:15
a shame you're not Canadian. They apologize constantly.
Elle 19:17
That'd be awesome. I'm good. I'm good in Jersey.
Scott Benner 19:21
So, okay, so All right, so that. So we have a pretty good feeling for who you know, for what your situation is there with that,
Elle 19:27
getting diagnosed diabetic, in that, that mess, was just not ideal.
Scott Benner 19:31
No, you know, it's obviously bad time, like, yeah, probably not perfectly suited for the situation to begin with your mom, not at all. And then, you know, put her in this situation. Who knows it sucks, like I'm not gonna say otherwise, and I'm sorry, that's your situation and hers, by the way, having said that, so you had to grow up taking care of yourself and your diabetes,
Elle 19:53
basically. Yeah, it felt that way. I'm sure, looking back, my mom thinks she did a lot and she did, I'm sure she did. Yeah, but I remember taking care of myself as soon as I like, like, I said I was able to I was just kind of like, fell into my lap, and I just went running from there, right?
Scott Benner 20:08
I hear you listen the other day, Arden, I was talking to Arden about something, and she goes, you don't even know what you're talking about. And I was like, Wait, I don't know. And I was like, I don't know how to respond to that. Like, I'm like, what I'm telling you is 1,000% correct. I've gotten this information from 25 different doctors and 1000 different people living with diabetes, and like you can trust that this idea is right. But in the end, she still, I'm still her father, and once in a while she looks at me like us old guy doesn't know what he's saying. So how old is she now? 21 she's almost 21 Yeah, yeah, yeah, a new phase of life. Yeah, it's all so exciting. It is okay, so you're but I want to figure out what's going on. Like, when you're growing up feeling alone, whether you are or not. Like, what does that do to you and your your relationship with
Elle 20:55
diabetes? Oh, my God, I had the worst relationship with diabetes, because, again, diabetes wasn't as not to say popular, but not so many people had it. I went to a private school growing up. I was the only person that had it up until, like, my last year, a friend. I still talk to her till this day, we went to high school together. We connect sometimes on Instagram, like just chat, keep each other up to date. We were pregnant at the same time. So like hardly anybody had it, like hardly anybody I knew had diabetes. I'm the only person in my family with diabetes. Nobody else has type one. I didn't know anybody with type one, so it definitely made me feel super isolated, super alone. I hid it as long as I could. So in elementary school, you know, obviously I would have to go to the nurse before snack and lunch and dose and check my sugar there. But once, I was in high school, I went to a public high school, which was very different from what I grew up. Going to, you know, there was a little bit more freedom. I could go to the bathroom and check my sugar there. Nobody knew I had diabetes. I didn't have a CGM. I didn't have a pump, so it was very easy to hide, and I just felt like, well, if I hit if I hide it, nobody can ask me questions. Nobody can make me feel different, nobody can make me feel isolated, and that's just kind of what I did up until I went to college. And how did it change? In college, I had even more freedom. I lived it. I went my first year in college, I was in Miami. I had a roommate. My parents would ship my insulin to my apartment, and that's when I really started going out. The nightlife, you know, over in Miami is obviously way different. I didn't have a curfew. I could eat whatever the heck I wanted, so it was just very different. Cocaine, no, not in Miami. No, Miami. That's not right. I have I, I'm not gonna lie. I there was a time where I was like a party animal in my 20s. Thankfully, it's nothing. I got addicted to. I tried it, realized I didn't like it, and went about my business. But no, Miami was just a lot of drinking. In Miami,
Scott Benner 22:47
are you taking care of your diabetes then, like, and, I mean, you're doing something, but what does
Elle 22:52
that look like? So I was, I wasn't taking care of my diabetes the way I should have. I was not checking my sugar. I maybe checked it in the morning when I woke up. So I will say, kind of checked it like a type two. I checked it in the morning. I checked it at night. I would do my long acting insulin and maybe short acting insulin before a meal, maybe. So my a, 1c during that time was probably like 10, like horrible, horrible care neglect, just not covering meals, even, yeah, no, hardly ever. And while that's happening, I mean, you can look back now, like, what did you think you were doing? So I actually had a conversation with a friend recently who was like, Well, if I, if I acted like it wasn't there, I thought it wasn't there until, you know, the DK hits in and then you're like, oh, like, yeah, I have diabetes. That's kind of when she said that, I was like, wow, that was like, life in the in my early 20s, that's what it was. Did you ever end up in the hospital? Mm, hmm, yeah. Oh, yeah. 2008 I was 20 years old. I had just come back from Miami. I dropped out of fashion school, and I was literally partying, not taking care of myself, and I ended up in a diabetic coma for a couple days, just because I also didn't have insurance after Miami, because I dropped out of school, I didn't have a full time job, so my parents insurance didn't cover me any longer, so I was basically rationing insulin, trying to survive. And I ended up in a diabetic coma for a couple of days, and then I was like, well, I need to get my ass together and, like, get it together and figure it out, because I'm going to die if I
Scott Benner 24:20
don't tell people what that means. Like, you were unconscious for days.
Elle 24:25
Yeah. So my best friend and I, we were supposed to go to, like, a family party. Her uncle is my sister's Godfather, so our families are very close, and it was, I believe, her cousin's communion party, and they live in, like a pack on. We lived in Hudson County, so she's like, I'll pick you up. We'll drive together. I was like, okay, cool. She said that morning, I wasn't answering my phone, which is very unlike me, and she came into my house and she said I was on the bathroom floor passed out. My lips were blue. I was breathing cold air. And she called my mom, and she was like, she is like, down and out on the floor. Like, what do I do? And my mom was like, did she have her insulin? She was like, What do you mean? I didn't even tell my friend at this point that I had diabetes. That's how well I hid it. And she took me to the ER, and I was in a coma for a couple of days. And I always ask them, like, how long was I in that coma for? And literally, nobody knows. They were like, we don't even we didn't even count the days. We were just trying to keep you
Scott Benner 25:15
alive. Geez. And now, Did that scare you into taking care of yourself? Or no, 100%
Elle 25:20
it did okay. 100 so I did. I got myself together. I started checking my insulin, checking my sugar, giving myself insulin. I was on pens at this time, but again, I didn't have insurance, so I was, like, trying to get into, like, you know, the programs that they have. I was going to, I'm sure you're familiar with it. In Jersey. I was going to university hospital. They would give me, like, samples. And I was there, like, every three months, checking and, you know, getting myself together. I did fall off a couple times where it's just like, I want to eat this and I, you know, I don't feel like going to the bathroom and taking insulin, but it was never as bad as it was before the coma.
Scott Benner 25:55
Okay? And so that's almost 20 years ago. It's like 17, not 17 years ago. Yeah, describe the difference between now and then. How do you manage yourself now and what do you think the process was to getting you from there to here?
Elle 26:11
So like I said, I did have a miscarriage in 2017 my husband and I started dating in 2016 He's the first person I ever dated that I was very upfront with Hey. I told him, on our third date, I have diabetes. I'm like, if, if that's like, you know you're out and you don't want to deal with me. You want to run for the hills. I completely understand it. He looked at me, he laughed. He said, My mom has diabetes. And I said, what does she have? Type two? And he was like, yeah. I was like, yeah, not the same. I'm just like, so
Scott Benner 26:37
here's the joke. He didn't know why he should run from you, but the diabetes is the least of
Elle 26:41
it. Exactly. He was thinking, like, he had no idea, and he was just like, no, like, I get it. I like, you know, whatever wanted to stick around. It's funny because after I told him that, literally, like, 20 minutes, I saw my first shooting star ever in my life, and I was like, Wow, maybe this is like, meant to be. So after that, I still wasn't on a pump, I still wasn't on a CGM. And then my husband and I got pregnant just very spontaneously. It wasn't a decision that we made. It just literally happened. And I was shocked, because an endo after my coma told me, good luck getting pregnant. You're never gonna have kids. Your Diabetes is So, you know, not taken care of. So I never even thought that I could get pregnant. And then I got
Scott Benner 27:20
pregnant. But that's like, nine years later, though, right after the
Elle 27:23
Yeah, this was okay, so that was 2008 This was 2016 so eight years later.
Scott Benner 27:29
So tell me something so between the 2008 incident and you getting pregnant the first time, you're trying harder, but that's not saying a lot, because you were, like, literally not bolusing for meals sometimes. So, like, right? So what did that time look like for you? So
Elle 27:44
my husband was kind of like, what's your sugar? Did you take your medicine? But there would be times where I would just, like, fall off, you know, like, it would just be, like, so exhausted for how
Scott Benner 27:53
long? What would a break look like in time, like, if you just stopped taking care of yourself as well? Did that go on just for a day, just for a meal, it was, oh, it
Elle 28:02
would probably just be, honestly, around the time of my period, I would just be like, lazy and just not want to do anything. I would want to eat all the junk. But it catches
Scott Benner 28:10
up to you. Yeah? Once a month, you'd be like, I'm not doing
Elle 28:13
f this. Yeah, basically, okay. And again, very easy to do. I wasn't on a pump, I wasn't on a CGM, so I felt like that kind of hindered my diabetes a lot, because I was like, if I'm, you know, I'm not. Now I look at my Dexcom a million times a day back then, I didn't even know what my sugar was sometimes, and I would just go about life like, like, nothing, you know, very scary actually, thinking about it and talking about it. Now I'm like, I was really playing Russian roulette with my health. Like, what was I thinking?
Scott Benner 28:40
Yeah, I know. Listen to looking backwards is sometimes very educational. Yeah. So are you telling me that your first wake up call that got you from, like, literally not bolusing for meals half the time was 2008 but then the next one is 2007 the miscarriage that gets you, that brings you, like, levels you up again.
Elle 29:01
Yep, the miscarriage changed my life completely, because after that finding out, and it's crazy, because I found out I miscarried, like, literally a year to the day that I met my husband, and then I was like, Okay, I need to get it together. That was August 28 I had to have a procedure done because me and my husband, ironically, were going away to Mexico to celebrate our anniversary, and the doctor was like, I can't let you go over there and miscarry naturally. She's like, I just can't do it, especially as a diabetic. God forbid something happened. So she was like, I just feel comfortable doing a DNC, if you're okay with that. And I said, that's fine. Like, what's the recovery like? And she's like, you'll be okay. She's like, we just can't go in water. I was like, ma'am, I'm going to Mexico. But whatever, it worked out. We went during a hurricane, so we didn't really go in the water much. Anyway, when we came back from Mexico, I went to the doctor that week, and I got on a pump within a couple of days of that. So I was like, I need to get it together. Because after I miscarried, I was like, I want a baby. I knew I could get pregnant. And that was just like, my goal. I was like, I. Have a baby, and my husband was all on board. He was like, let's do it. Let's get you healthy. Let's try again.
Scott Benner 30:05
And while you're talking about it here, you can reflectively see this was a show, right? Oh, yeah, yeah. But did you know? But did you know it was while it was happening?
Elle 30:15
I did. Okay. This is gonna sound absolutely insane. I did, but because I had done it for so long. For me, it felt normal. It felt normal. I felt like I was as long as I was waking up the next morning. I felt like I was doing okay,
Scott Benner 30:29
yeah. That's, you know, that's the most human thing anybody's ever said, yeah, yeah. I felt
Elle 30:35
like, as long as I always say, I wasn't living, I was surviving. At that time, my body was in trauma all of the time, you know? Yeah, and then when I did check my sugar and I would see, like, 350 I'd be like, Wow, that's really high. Like, imagine if I was just I kept going without knowing, you know what I mean, I was always shocked when I looked at the meter and it was high, because I never knew what my sugar was.
Scott Benner 30:56
You were shocked by it, even though you weren't shocked. Yeah, I'd be like, Oh my God, oh, my God. Let's pause for a second to ask you, did you functionally understand how all this worked, like how insulin worked, why you were taking it, how foods impacted different glycemic
Elle 31:11
you saying that? No, I didn't. I think that I was so young when I was diagnosed, and again, this was like dark ages of diabetes, right? We didn't have internet, like the way we do now. We didn't have Tiktok or Facebook or even podcasts. We didn't have resources at our fingertips the way that we do now that I don't, I honestly don't think I did understand it. Yeah, I remember, in 2008 after coming out of the coma, I was at the clinic at University Hospital, and I started crying to this one doctor, and I was like, I just wake up and my sugar is high. He's like, Honey, you have diabetes. I was just like, it's so frustrating, you know? And I was like, wow. Like, that's what really clicked for me. I was like, my sugar is high in the morning because I'm not producing insulin. Like, it really took me a while for it to click for me. Like, this is really a serious thing,
Scott Benner 31:58
yeah. I mean, it took you along. It took you a couple of different setbacks to to see it. So do you think that it was easier to climb out after the miscarriage? Like, is it, I want to have kids, so I need to figure this out. And was it easier to figure out because you had the support of a person who's like, Okay, we'll do it together. 100% my
Elle 32:16
husband is the most supportive person when it comes to my diabetes. He is every morning, he texts me, good morning, babe. What's your sugar? Or he'll look at the app. You know, he's just very probably the most supportive person I have. Actually, after our miscarriage, I was on the I got on the Medtronic, the 670 G that was in September, in December. I didn't know that this could happen. My cannula bet in the pump, and I went into DKA, and I remember him coming home from work, and I'm like, over the toilet, I'm like, I need to go to the hospital. I was like, I have ketones. I've been throwing up. I'm so dehydrated. And he like, didn't really know what DKA was, but he like, didn't waste a breath. He packed a bag. He literally picked me up out of off the bathroom floor, took me to the hospital, stayed with me. And he was like, Babe, this is terrifying. I'm like, I know. I'm like, but this is diabetes. But he was like, what? Like, what happened? He's like, you haven't ate anything bad. He's like, you've been dosing for insulin. He's like, shocked, yeah. And I think that's when it really woke him up. And was like, wow, this is like, this is a serious thing, but crazy,
Scott Benner 33:15
isn't it? Just to think that, like, you can do everything, right, but if a tube gets a kink in it, you could still end up in the hospital.
Elle 33:21
Yeah, that that happened to me, actually, last week. Same thing. Well, I forgot to put the Omnipod in manual mode. So I work four to 12. I got off of work at midnight. I had my my pump in manual mode because I did an extended Bolus for my meal before that, forgot to put it in automated mode. And my manual mode I'm typically I run low. I go in the 40s the 50s. So I had just switched my rates, just so that I don't drop that low. In case I ever forget to switch to automated. And I wake up Monday morning my sugar just reads high, like, high and just like, What the heck. I throw up. I check my ketones. My ketones are the darkest color on the strip. And I'm like, this isn't even something I could have avoided. Could have avoided. I was sleeping for seven hours. You know what I mean? So I think stuff like that just makes you realize that diabetes really like I always say, the most offensive thing you can say to a diabetic is you just have diabetes, because it's so much more than that. The littlest things can really throw off your whole flow.
Scott Benner 34:20
Life is fragile, and you know, there's a lot of processes between you and health, especially when you have type one. There's an example that's not the OmniPods fault. You didn't put it back and automate you. You made your manual settings too weak, and then you didn't go back into automated and there you go. You wake up and you know, you've got ketones in there, and they're significant. Did you have to go to the hospital for that? Or did you know how to manage through it
Elle 34:42
on your own? No, I went to the hospital. He did. And what did they IV, nothing. Insulin, drip, IV, fluids, electrolytes. I was out the
Scott Benner 34:49
next day. Okay, do you think that'll happen again? Do you have that feeling of like this is a thing that's going to keep happening to me? Or do you feel like you can get a process in
Elle 34:59
place? Well, no. Because now I have integrated in my head that before I close my eyes, when I check my sugar, I grab my pump and make sure it's in automated mode. Now it's like another, you know, put it on my tab, type of thing for diabetes, like another thing I have to make sure about now before I go to bed, yeah, you know, do you feel
Scott Benner 35:16
like your husband is in place of what you wanted from your
Elle 35:19
mom? No, actually, you know who I feel like is in place of what I wanted as a mom. It's the type one moms I connect with now online. Online,
Scott Benner 35:28
yeah, and you tell people, you know, we haven't even said anything. Tell people how you do that.
Elle 35:33
Oh, so a couple weeks ago, it's actually 19 weeks ago, I decided, after like that huge Tiktok ban, that if Tiktok came back, I would start a Tiktok account and just dedicate it to diabetes content and making connections and building a community, because growing up, I never had that, and I feel like that's where I really missed out, sure. And I just kind of was like, I want to see eyes as like a new diabetic coming into this community. And I made a Tiktok account, I've made some really great connections, and I got live access on that account pretty quickly, which you need a certain amount of followers, which I didn't even have that amount of followers, and I got live access. So I went on, and I just started talking about diabetes. I started telling my diagnosis story. And people were just coming in. They're like, Hey, I have type one for this many years. You know, I was diagnosed here. I'm on this pump, I'm on this CGM, and just, like, really, just, you know, genuine communication, yeah. And then the next day I went on, I did diabetes trivia, which people were coming in. I'm like, Oh, all right, more people are coming in, more connections, some of the same old faces from yesterday. And then I said, How funny would it be if I, like, open up my tick tock boxes and we do like, a live like, you know, back in like, covid days, PE, that's all people were doing, yeah. And I was like, We could call it something corny, like type one Tuesdays. And then the light bulb went off, and I was like, All right, let me reach out to some of these connections I've made and see if they want to join me. And I'm thinking, nobody's gonna show up. And the first type one Tuesdays was the following week. I believe it was February 11. All of the boxes were full, which is nine boxes, so eight people that I really didn't know, including myself. And then there's like a queue, you know, people requesting to come up. There was like 20 people in the queue. And I was like, wow. Like, this is not what I thought it was gonna be. It was like, so much better. I was like, gonna be grateful if one person showed up and we had like 20 people trying to, you know, come in and talk, and it really just, like, opened up my mind. I was like, All right, well, this is what I'm gonna do. I'm gonna keep doing this. So every week I reach out to people to see kind of like it's, I call it like a podcast on Tiktok. I bring people up, we talk, we hang out. I open up the boxes, you know, nice. It's like a little therapy session. Yeah? No, it definitely is awesome, yeah. But the moms that I've I've made connections with on type one Tuesdays. You had Shelby on recently with Paisley and and tracker. She's a really good friend of mine. I don't know if you know little Bane on Tiktok. He's a little two year old about to be two year old. Me and Marley have become really great friends. Jomo. You've had Jomo on a couple people you've had on, I'm like, very close with, but like the moms I connect with more, because not only are we very close in age, but I see the way that they care for their kids. And I'm like, That's exactly what I would have wanted. Yeah, you know, and that's where you're finding that, that feeling from, I feel like it's very healing. You said that kid's name Bane. I think his mom's scheduled to come on. Yeah, she is next month. I think, Oh, awesome. That's great. She's become one of my really great friends, like when I was in DK, she's like, elle, you need to get to the hospital right now. And then I got out of the hospital Tuesday and I was like, Oh, I think I'm gonna do type one Tuesdays tonight. And she's like, You need to rest. Like, okay, you're right.
Scott Benner 38:28
It's awesome. You need somebody to tell you what to do. Sometimes I'm very stubborn. I was gonna say everybody needs other once in a while, somebody just to look in the face and be like, I don't know what you think's happening right now, but yeah, calm down for a second so we can figure this out. Yeah, for real, your kids, do you worry that they might get type one? Do you have other autoimmune in your family?
Elle 38:47
So there's no Well, my mom had not. My mom, my grandmother, had a thyroid issue. So when I, you know, obviously, at all my appointments, I make sure they're checking my thyroid, but no other autoimmune issues. I'm the only one with type one. So I did okay. This is kind of where I'm, like, conflicted a little bit. So I got the trial net kit to test both of my kids. It arrived, and I just felt like, this feeling of like, maybe I don't want to know, maybe I don't want to know if they have antibodies yet. I said to my husband, I said, I feel like, just because of the way I am, I'm a very anxious person. I'm like, if I know that it's an underlying issue, I feel like it would make me more anxious about everything I said, whereas if I see a symptom, like, if I see like my kids are sleepy or hungry or extra thirsty, I have the means to check their sugar. I have meters. I have strips. I can always check and go from there. So I have the trial net kit. I do worry about them getting type one, especially like my son, like, a couple weeks ago, he was just downing water, and then there was one point he had an accident. I was like, get over here. I was like, we're checking your sugar, but his sugar was fine. But I do do that. Like once every once in a while, I do check their sugar. Probably, like once every two months I check their sugar, but, I mean, I have the. Can't. I can always send it if I feel differently, but I just feel like, if I know, like, there's an underlying, like antibody, that it would I would be a paranoid, neurotic freak.
Scott Benner 40:09
There's two. There's definitely one or two ways to think about it. Hey, are you sure your mom didn't have a thyroid problem or doesn't not that I know of Yeah. I mean, her mom did, right?
Elle 40:17
Her mom did. Yeah, my grandma did. Do you? I don't, thankfully, knock on wood, but you know, it's like in threes. It's graves, thyroid, diabetes, celiac, so it comes in fours.
Scott Benner 40:29
But like, do you? Do you have any symptoms of thyroid issues? No, thankfully not. No good. And your mom, how about anything else? Like your mom, have any mental health stuff?
Elle 40:37
Not mental health. I think that she she she could benefit from therapy, but has never done it. I'm very big into therapy. Now. I started going to therapy probably my first year of college, and I still go to this day. I'm still in therapy. I feel like there's not enough therapy for me, for for the trauma I've dealt with. You
Scott Benner 40:55
mentioned your mom is having health issues. Though. What are those issues are you? Can you tell me if
Elle 40:59
they are? Yes. So recently, she had, like, a really bad gallbladder incident where she had to have that taken out. She was on oxygen. Recently, both of my parents heavy smokers, so probably emphysema. COPD, I don't really know if she's ever gotten a diagnosis of that. Gosh, I think in the beginning of May, she had an accident where she fell and she, like, fractured her ankle very badly. She's already needed three surgeries for that. So sorry. That's terrible, very fragile. Yeah,
Scott Benner 41:27
yeah, that's crazy. So when you think of coming on a podcast to talk about your diabetes, what is it you hope to leave with people when, when this is over,
Elle 41:36
what I'm doing now is kind of like what I hoped for as a child, like somebody that gets it, understands it, doesn't sit there and portray like a perfect diabetic, because I am nowhere near that. And somebody who like, I think the most wholesome comments I get is when people, you know, doing type one Tuesdays, people come in like they see you on the FYP, you know, and if they hear what you like, they're gonna come in and they're gonna chat with you, I feel like once I started type one Tuesdays, the comments that I started receiving, the the ones that I that brought tears to my eyes, would be like, when people would be like, you know, I haven't really been taking care of myself for the last week or so. Like, it's just feeling so overwhelming. But listening to what you were saying on type one Tuesdays, like, I made sure I took my insulin today. I made sure I checked my sugar, like things like that. You know, just kind of like being somebody I wish I had during the time when diabetes felt
Scott Benner 42:29
rough. You've been in that situation too, where you haven't given yourself insulin, right? Yeah, how many of the people who are talking to you on social media do you think are are similar to you, like their stories are similar to yours, because, like, I have a fairly big community, right? And especially on Facebook, I don't hear a lot of people telling me I don't take my insulin, right? Is it because I'm attracting people who think about diabetes the way I do? That's true. And is that what's happening to you? Are you attracting the people who like vibe with you, whether you whether you even know it or not, because I've never thought of it that way, actually, until you just said something. Just now, it's not like, I'm like, Oh, I have said to people in the past, I think that Facebook group follows my vibe, meaning, like, you know, be cool to people. And like, everybody's got a story, let them have it. Like, you know, let people talk, you know, try to share what you know works with other, each other. But like, I wonder if the underlying vibe is also, like, people who are trying, aggressively trying to be healthy. Yeah. Do you think that's happening? Do you think you're attracting people who will say, Oh, gosh, I don't take my
Elle 43:31
insulin a lot. I don't think it's obviously I'm taking my insulin now. And like, you know my a, 1c, is great. But I think that my story might resonate with people who are maybe not not taking care of themselves, or maybe just going through that temporary diabetic burnout, you know, because that happens, people think like, Oh no, diabetic burnout isn't a real thing. It's all in your head, but it is like having something attached to you at all times. I know there's times where I get sick of it and like, when my Dexcom expires, I'll leave it off for an hour or two now just to get some like, Oh, my arms are free. You know what I mean? There's people probably going through that burnout that, you know, just like, oh gosh, somebody who understands it, somebody who gets it. So not saying that my community is people who aren't taking insulin. I think what's great about my community is that I am connecting with people who are so on top of their care, now that I am influenced by them, you know what I mean, like, so we have, like, a little type one Tuesday chat, and there's a gentleman in there who shares every unicorn he gets. And when I tell you, this guy's got 667, unicorns a day, and I'm like, man, like, That is impressive. But there are people. There's a young girl who comes in who she's like, I love Dr Pepper. I can't stop drinking Dr Pepper. My sugars in the four hundreds. And I'm like, Girl, put the Dr Pepper down. It's a very eclectic group of people we have, but so there was just a message, and I'll read it to you. This was literally the first week after type one Tuesday. She said, Hey, l, I happen to join your live tonight. For the first time. I've been struggling to find another t1, To connect with currently going through a tough time with my sugars and your life helped me feel not alone. Thank you for sticking around and like that was like, the first message that, like, choked me up. I was like, Oh my God. Like I just started this as a passion project, not thinking like I was going to help anybody. And just like that one message alone made it worth it for me. You know what? I mean.
Scott Benner 45:18
Listen, I got an email in 2007 from England, and I was writing a blog. And I don't even know if I knew it was a blog at that point. Like, like, you know what I mean? Like, it was pretty much before blogging was really a thing, and I was just literally writing on a piece of software that was on my computer. And I never forget, like, I opened up that software. It was called I web, and the selling point of it was you could write something and people online could read it. And I was like, Oh, that's awesome, but that's how old I am, and how new of an idea it was back then, right? And, like, a month into it, I get a really nice letter from the UK, and this woman's just like, your blog is really helping me and my daughter. And I was, like, awesome. Like, half of me was like, a blog, like, what I didn't even know what I realized I know what I was doing really, like, I'm being serious, you know, yeah, and that was the first time I felt it 2007 and at some point today, I'm gonna go online and I'm gonna read dozens of those notes, and it doesn't get old. Is what I'm done, is what I'm telling you. It's awesome. It really is fantastic. And it her message to you, like, thanks for sticking around, like, and doing this thing. Like, that's the part. I think that there's times I'm most proud of that part. Like, is the keeping it going, the consistency? Yeah, because that's the hardest part. It's very difficult once you get into the other side of it. Like, how does this all get, like, financed and, you know, like, how is it possible that, you know, on Tuesday, at 130 in the afternoon, I'm recording something with you that somebody won't hear for two months, right? The way you finance it and keep it going and everything that's boring and whatnot. Well, I'm talking about the getting up every day and having one of these conversations, or sometimes to or, you know what, yesterday, I'll, you know how many times I recorded an episode yesterday? I can only imagine. I made three yesterday. Yeah, I was gonna say yeah. So yesterday I recorded with I recorded something with Jenny that you won't hear for five months. I recorded something with the president of Dexcom that you'll hear on Saturday. And I recorded a conversation with a woman in her 40s that you'll probably hear a number of months from now. To say that that was my entire day, that would be a lie. I also did a ton of social media. I did like all these things that it's so that somebody can come say, Hey, I appreciate that this information was here when I needed
Elle 47:37
it, right? There's a lot of behind the scenes that people don't see. It's massive, actually. Yeah, it's, it's great. I didn't realize it doing this just, like, for fun. And then I was like, Well, I got to get this ready and this ready and have a topic, and have people lined up. And, you know, there's just so much that goes on that it looks easy because it's so well put together, but there's so much that goes into it.
Scott Benner 47:59
Yeah, fun is, like, the last word I would use to describe it, yeah, I'm having fun talking to you. And like, Thank you. No, no, no, you're you're lovely. And, you know, there's other parts to it, like, you'll see the longer you keep going, like, there's part of me that, like, there's like a gamification to it, even just to keep me, like, keep me attached to it, right? Like, that's where like downloads come from. I know I'm reaching people because of the reaction I get back. Yeah, of course, honestly, it wouldn't matter what the numbers said like and I got
Elle 48:26
it going on for so long, if you didn't resonate with mostly everybody,
Scott Benner 48:31
well, I'm saying the numbers, they're not even important like you. You could make an argument. Well, they're important to the advertisers. Trust me, the advertisers care if you click on a link, right? So if you're clicking on my link, they're happy with me. They don't care if I have 1,000,002 million, 3 million downloads this year. They don't care, as long as their links are getting clicked, right? So they're they're being satisfied, they're fine. My point is, is that I don't care about the downloads, like, I care about the feedback. You know what I mean? Like, I know I'm doing well when I hear from people. Yeah, that's the most important part, but then how to keep that going for tomorrow and the next day? Like, it's simple to say, like, Oh, it's a podcast. Well, I'll just make one a week. Well, you can if you want, but you have a hobby, then you don't have a podcast. Yeah, and every day that you're not putting out content is a day that people aren't being drawn into the community, is a day that you might not find that girl who wrote you that note,
Elle 49:19
which is why I was so nervous about taking off last week. But when Marley was like, elle, you need to rest, yes, and it's true, because even my friend Jomo, you know, when I started this new job in March, he was like, elle, you have like, five full time jobs, like, how are you managing it? And I'm like, I'm not. I'm literally running off of fumes right now. I don't know how I'm doing it, yes, but it is by the grace of God that I'm still doing it. I'm still showing up, I'm still putting out content. I'm still having, like, you know, things where people can interact, like, in my stories, like, it's another full time job this social media. And I think, you know, from people behind closed doors, it looks very simple and it looks easy to also do, but it's, it's a lot, you
Scott Benner 49:59
know, I. Be I'm completely honestly, I'm looking at my whiteboard right? I'll tell you right now, ever since tandem, Omnipod, Dexcom, us, med contour, next gen, cozy Earth, T, 1d, exchange, touched by type one and Medtronic, if it wasn't for them, I couldn't do this, and I would, and I wouldn't do it, because I don't know how you're doing, what you're doing, and you're not doing nearly as much as I'm doing. No, I'm not right. If I had a full time job and two little kids and I would and diabetes, I wouldn't be on here going, like, hey, come find me on, you know, diabetes Tuesday. Like, you know what I mean? Like, I would type one Tuesday. I'd be like, I'm tired. Yeah, you know, you said it a couple of times. It probably looks easy from the outside. And I don't know if it looks easy to people or not, but what I can tell you is, is that the thing I'm doing takes about 1000 times more effort than you imagine. No, I believe it. I believe it. It's overwhelming, and still it is, the numbers, the, you know, the downloads. I'll say it sometimes because I'm proud of it, but like, you know, I've been in the top 30 of the US medicine category for like, seven years.
Elle 51:10
I remember when I told my dad I was going to do this podcast. He Googled you, and he's like, Wow, look how high up he is
Scott Benner 51:16
on the podcast. Why is this guy talking to you? Yeah, my dad was so excited. Well, I'm happy. I'll tell you that. Hi, I'm happy to talk to you. Is it okay to share that you tried to be on other diabetes podcasts, and they didn't, they didn't respond to you. Okay? So before we started recording, I was like, I was so surprised you responded to me because I reached out to other diabetes podcasts that are not nearly as big as yours, and they were not interested. And you know, I didn't answer you then, but I'll answer you now, because you just said you're surprised to be here. I don't know what those people are looking for, but I'm just looking for regular people to talk about their diabetes. Yeah, that's all I care about. I don't need to talk to somebody who's been on 17 different YouTube channels and 10 different podcasts. And, you know, I don't care about somebody who's gonna spend next week while all those people are at Ada, buttering people up and trying to get content deals, and they're, you know, making videos like running around talking about all the, you know, all the manufacturers new stuff, so they can go out and show for those companies, so that they're, you know, they hope to build a relationship with them. Like, that's, I see what's going on, right? Yeah, while those people are doing that, I'm gonna be on a cruise with 100 listeners, getting to know people, like one on one, like building my understanding of what, like, an actual community in person connection means, because I'd like to build on that going forward. And for those of you who are now going like, oh, yeah, sure, Scott, but you're getting paid for that, I'm going to tell you something right now. I'm not going to make $1 off of that cruise. I'm going on that cruise. It's going to be me and 100 listeners. And when the person who coordinated it said, like, we have to build in private time for you, we have to build and rest, I said, I am going to speak with every person on that ship at length before we
Elle 53:01
get off of it? Yeah? And I think that that's what makes the biggest difference. Yeah, I don't
Scott Benner 53:06
care if I'm exhausted when I get off of that ship. And I don't care that. Like, you know, we didn't sell it out with 500 people, and I didn't make some money off of it. Like, I don't she got paid. Everybody's getting their thing. It's going to be a great time. We got some brilliant touch by type one. And Omnipod sponsored it so that we got some nice stuff to give people. I've got Erica coming on and doing a live talk, you know, over zoom. I've got Jenny coming on doing a live talk over zoom. Did I want them on the ship? I did. If 200 people would have come on the cruise, would we have had them there? We would have maybe we'll get it accomplished next year, that'll be great. But if not, I don't care. I care about meeting those people, and I care about them meeting each other and building some sort of a relationship outside of online. You know,
Elle 53:53
I think that's the biggest thing, is making that connection. Because, like I said, I've obviously didn't have a community growing up of my own, and I feel like, had I had that, I feel like my relationship with diabetes would have been 100% different, because now I don't look at diabetes negatively. I always looked at it as like a character flaw, really. I was like, wow, I hate having this disease. Wow. I hate that. I'm so, you know, different than everybody else. I hate that I can't even just eat this cookie without checking my sugar. I'm sorry. I'm like, very eager to keep my diabetes in the forefront of everything I do. And I'm like, Wow. 25 years later, I've had this in my back pocket the whole time, but I feel like there's a reason for sure that it's happening now, like there's a specific reason why it's happening now, do I know what it is? No, but maybe it's for you know, to meet you and go on the cruise next year that you know, like we're both from Jersey. How funny is that I
Scott Benner 54:46
know? I well, I wish you a ton of luck. I I think what you're doing is awesome. To show you what I think people don't understand about conversations like you shared some incredibly insightful and personal stuff about growing up through a divorce. About growing up with diabetes, about like, you know, like, those are that story is uniquely yours.
Elle 55:06
I think that's what I love about it. I feel like there's, you know, obviously everybody has a diabetic story, but I feel like nobody's story is very close to mine, in a sense. And I feel like I've never really shared my story. It's funny, because I was getting ready to do this podcast, and, you know, my friend said to me, you're always the one interviewing everybody else. You're getting interviewed for the first time. How do you feel? I'm like, it's just bizarre, because I've never really told my story this much in depth. And, you know, really, I'm, I'm feeling it, and I feel like every time I go through this process of, like, you know, just talking about even my diagnosis story, I'm like, it's, it's healing for me, which I feel like I needed,
Scott Benner 55:42
also the best way to connect with people. So you should do more of that on your thing. And those people who turned you down like, I hope they listen to this now and went, Oh, I could have had that conversation. I could have had that conversation with her, because I don't listen. I don't know how obvious it is if I'm like, ham fisted or I'm good enough at this that you don't see it coming, but I'm sitting here staring at a spot on the wall, listening to you right like I am trying to hear what you're saying. I'm trying to imagine the parts of your own story that you don't even understand. Like I'm trying to ask more questions to get you down that road. And I mean, I feel like I did a good job of pulling stuff out of you that, like, maybe they wouldn't have gotten, but at the same time, like, I don't know, I see what some of them put up for their content, and I'm just like, God, I would never do that. There's
Elle 56:27
so many doors that have opened up that I feel like the closed ones are okay, because I feel like, in a way, it's a little bit of protection, if that makes sense. You know how? So just because I feel like, obviously I'm very in tune with, like, I put God in the forefront of everything. Like, when I started type one Tuesdays, I said, God, if this is what I meant to do, like, give me a sign like, I'm very, like, sign driven. And I feel like, once I did it, like, things started opening up. Like we spoke previously, you know, I've had, now I have brands reaching out to me. Hey, can you post a video with this? We'll give you an affiliate link. And granted, I don't do that for the money, but it's the first time that somebody's taken interest in me, and what I'm doing to want to work with me in that way. And I'm like, Wow, I've never had that before. Yeah, I've done Tiktok shop, but that's Tiktok sending me a free sample. It's not people interested in me. Hey, you know, like, it has nothing to do with Tiktok. It's for their brand. And I'm like,
Scott Benner 57:20
I would take from that, if I was you, that you're you're making inroads, and the people are noticing what you're doing.
Elle 57:25
Yeah, yeah. And that's what I'm saying, like, doors are opening that have not opened before, and that's why I'm just, like, so happy to be doing what I'm doing, because it is a passion project. And obviously I hope to have, like, a bigger scale of type one Tuesdays in the future. Do I know what that's going to be No, but I'm going to ride it to the till the wheels fall off and just keep doing what I'm doing. And, you know, something happens, and it's in the will of God for me to be doing what I'm doing, then I'm just going to keep doing it. I kind of take my lead from God, but I feel like people saying no or not responding to my you know, wanting to be on their podcast, it's like, well, then that's not the place for you to be. That's not where I want you to be. And
Scott Benner 58:03
I would say, keep doing what feels right to you. This is awesome for you. Tell people your Tiktok
Elle 58:08
handle. So my Tiktok handle is t1, diaries, T, 1d, I, A, R, I, E, S. My name is L. And every night, every Tuesday night, at 10pm on tick tock, eastern standard time we go live and we talk to different people. Sometimes we have a bunch of diabetes in the box, and we just, honestly, just shoot the and just talk about it. Sometimes it's about how hard it is. You know, DKA, whatever the topic is that week, we'll just kind of go in together. And there's always a really great community, and it's a lot of fun. We have a good time doing it.
Scott Benner 58:37
Well, I'll tell you what. When yours gets on my calendar, if you, if you would like, I would come on and do your No way, sure. Of course, that'd be love
Elle 58:46
to have you on you will you come up in a lot of our chats, a lot of people you know are drawn to you and your content and your podcast, and you know your fan favorite over here on type one Tuesdays. I would
Scott Benner 58:56
love that. Awesome. Yeah. Well, we'll work it out in the future. I would love to be a supporter of what you're doing. So just Thanks, Scott, yeah, let me know. Okay, all right, hold on one second for me, this was awesome. You were terrific. Thank you.
This episode was sponsored by touched by type one. I want you to go find them on Facebook, Instagram and give them a follow, and then head to touched by type one.org where you're going to learn all about their programs and resources for people with type one diabetes. The podcast episode that you just enjoyed was sponsored by ever since CGM. They make the ever since 365 that thing lasts a whole year. One insertion every year. Come on. You probably feel like I'm messing with you, but I'm not. Ever since cgm.com/juicebox Summertime is right around the corner and Omnipod five is the only tube free automated insulin delivery system in the United States, because it's tube free, it's all. So waterproof and it goes wherever you go. Learn more at my link, omnipod.com/juicebox That's right. Omnipod is sponsoring this episode of the podcast, and at my link, you can get a free starter kit. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcast and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? 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. The episode you just heard was professionally edited by wrong way recording, wrong wayrecording.com,
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#1594 Molly's Game
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
Allison’s 8-year-old daughter, Molly, was diagnosed with T1D last February and is one of only three documented adolescent acute esophageal necrosis cases.
+ Click for EPISODE TRANSCRIPT
DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox podcast.
Allison 0:14
My name is Allison, and I am the mother of a type one diabetic named Molly. She was diagnosed February 15, 2024 so we're a little over a year into this fantastic journey. If
Scott Benner 0:31
this is your first time listening to the Juicebox podcast, and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all, look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management. Go to Juicebox podcast.com up in the menu and look for bold beginnings, the diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. 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. The episode, you're about to listen to is sponsored by tandem Moby, the impressively small insulin pump. Tandem Moby features tandems newest algorithm control, iq plus technology. It's designed for greater discretion, more freedom and improved time and range. Learn more and get started today at tandem diabetes.com/juicebox you Juicebox. 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/juicebox or call 888-721-1514,
Allison 2:06
my name is Allison, and I am the mother of a type one diabetic named Molly. She was diagnosed February 15, 2024, so we're a little over a year into this fantastic journey.
Scott Benner 2:21
Wow. You are almost a year and a half figure you're getting right there. How old did you say she was when she was diagnosed? She
Allison 2:27
was eight when she was diagnosed. Oh, you didn't say but okay, all right, yeah, no, she was
Scott Benner 2:32
eight, eight. Now, nine, probably almost 10 coming in there. You have other kids.
Allison 2:36
I do. I have a 23 year old and a 17 year old daughter.
Scott Benner 2:39
Wait, what happened is the second
Allison 2:43
marriage, third. Come on, Third time's the charm. Did you go
Scott Benner 2:45
to a wedding and get drunk? What happened?
Allison 2:48
No, I was young and dumb with the first one. Like 19, young and dumb. Oh, yeah, yeah. So that one obviously didn't last too long. And then I married my middle child's father, and he went to war. He was in Iraq for a while, and it just we tried when he came back, but he never quite came back the same. So we decided to go separate ways. Oh my gosh. And then I met my daughter, the youngest one, Molly, my diabetes dad, 13 years ago. We've been together since. So I think I got it right this
Scott Benner 3:19
time. Allison, you have a whole little like story going on here. I
Allison 3:23
am, I am, I like to say that I'm the classy version of Jerry Springer.
Scott Benner 3:26
There's three different, like private lines, exactly. Oh, wait, I wasn't gonna say it that way, but I'm so glad you did. You do have three different baby daddies?
Allison 3:36
I do. I do. But like I said, it's a classy version of Jerry Springer, I swear. But
Scott Benner 3:40
it's almost like three parts of a larger story, though. Like young you like, did young you think? Like, this is it? I'm building a family. Like, it's happening. Where did young you go? Oh, I can't believe this happened. We've made a huge mistake. Which? Which
Allison 3:53
happened? It was, what was one of those? Like, I so my I was young, he was a little older, and my parents were totally opposed to it, obviously they I'm a slow learner. Parents know best sometimes. And it was I found out I was pregnant and I had been kicked out of the house. So it was one of those young, I don't know, I was like, Well, I guess it's the next logical step. It wasn't. So it didn't
Scott Benner 4:16
last very long you get booted for being pregnant or prior to it, prior to Oh, like, yeah, gosh, we should stop talking about your kid right now to find out what you were doing. That's hilarious, although, you know what? You think it's a big thing, but it's not always how it goes. You know what? I mean? Like, I've shared that my wife was kicked out of her house right when we were dating. Yeah, right. Like, and if you look back on it now you're like that for that, it almost feels like it's a culmination of, like, somebody who just is like, I don't know what else to do. And they think this is gonna, like, shock you into it.
Allison 4:50
I think that's what it was that it was gonna because they didn't like us dating, which they were right. He was not a good person. Is not a good person, very bad person. And so they were right. And I think they thought. You know, if we kick her out, she's going to come to her senses, and I'm, unfortunately, extremely stubborn, so that actually just made it kind of worse. Yeah, so
Scott Benner 5:09
for my wife's, where her parents went wrong is that I had been, like, raising my family since I was, like, 13, so I knew how to handle problems and make sure everybody was okay and stuff like that by the time I was older. So they thought, like, kick her out. She won't know what to do, and she'll come back. She they didn't realize I knew what to do. They underestimated you. They misunderestimated me, is what they did, yeah, and yeah, you know what? Fair enough I could see myself back then they were right to guess the way they guessed they pre I take their point. The other two kids, any autoimmune stuff? No. So far, no. How about on your side of the family or you?
Allison 5:50
Yes. So I have fibromyalgia, my sister has some thyroid issues, and my mom has lupus. Oh, that's a mix, yeah, yeah. It's a really cool, little eclectic mix of stuff. And then we did find out probably six months or so after Molly was diagnosed, that on my husband's side of the family, there's like a second cousin or somebody that is type one, but even on his side, there's not a ton of autoimmune
Scott Benner 6:17
but enough, yeah. So tell me a little bit about the lead up and what you noticed and how it got you to a doctor or a hospital, wherever you went.
Allison 6:26
So we noticed absolutely nothing. Actually, it was crazy. And the doctor her, who I just talked to him yesterday, who at UVA, which is where she was flown to, was like, you had to have seen signs. And I was like, No, Dr devour, there were no signs. And Molly's a unique one, and she's very bougie on certain things. And so like at school, they would bring their water bottles, and she refused to refill her water bottle with school water, and she would only take home water. So I would know every day if she drank all her water, didn't drink her water, so there wasn't excessive thirst. She wasn't crazy like that. There was no huge drop in weight. She was always been kind of a moody kid that wasn't anything that was out of the norm. There was absolutely zero sign for anything. And it was Super Bowl weekend and that during that week, of course, it was a whole plethora of gross things going around school. So you had, like, covid, pink eye, strep, flu, everything. And I got up one morning I noticed your eyes were red. I was like, great, you've got pink eye. Fantastic. Took her that afternoon to the CVS just the Minute Clinic. So I'm like, I don't need to take her anywhere big. It's just pink eye. They asked me. They're like, Oh, well, you know, does she have strep? I'm like, Well, you're the I don't know. Like, she doesn't have signs of it. They went ahead and did a strep test too, and that came back positive. And she had no fever, no rash. Wasn't complaining, nothing. It was literally just the Pink Guy. So had they not run that test, I wouldn't have known strep. So that was on a Thursday. I kept her home Friday, Saturday. Brought up normal day, her dad was out of town with some friends. We went to lunch. She got her hair done, came home, she fell asleep on the couch
Unknown Speaker 8:09
and woke up with a fever. By the
Allison 8:13
time we went back to bed, like went to bed, it was gone. Go fever, no anything, and she woke up kind of lethargic Sunday, and was only eating applesauce and just not feeling too well. And then by Sunday night, she was definitely down for the count, and we got her up to go to bed, and she threw up just once randomly. I'm like, oh, okay, let's see how she does tomorrow, because she was on antibiotics. So I thought maybe they just hadn't kicked in because she hadn't really been, you know, she had just kind of started taking him, and then on Tuesday, she still wasn't getting better. She had thrown up again. She looked really bad. So I made an appointment at the doctor's office and her pediatricians office, and we brought her in, and they asked if we knew if she had been exposed to covid or anything else. And I was like, no, she I don't think she has. So they tested her for covid and the flu, and covid was negative, but she came back with flu type B and an ear infection. So at this point we have double pink eye
Speaker 1 9:13
strep, blue be an ear infection. Jeez. Yeah, right. And
Allison 9:19
so they ended up giving her one of the shots antibiotics to try and just like, get things going, because she wasn't eating, and she had thrown up a couple times. So this was on Tuesday. Get her home. She's still kind of out of it, not really eating. Wednesday morning, she wakes up, and she had been on and off all day or throughout the night, kind of waking up she was, she gets something to drink, throw up a little bit, but nothing crazy. And I thought that was gonna like to stay hydrated. Thank God, you know when they're throwing up. So she started, started ramping up through the day. On Wednesday, she was throwing up more. And where I ended up yanking her from this pediatrician and finding a new one, the nurse practitioners, nurse. Called in the morning to check in and ask if Molly was doing any better. And I was like, no, actually, I think she's getting worse. And she's like, Okay, let me talk to I think was, her name was Jessica, and see what she'd like to do. I'll call you back. I'm like, okay, great. So I have been up most of the night, so we ended up falling asleep, and I woke up about three, 330 and I hadn't heard back from the doctor's office, so I call, I get a different nurse on, and apparently the nurse who had called me decided to leave for the day, instead of calling me back to let me know that the doctor or the nurse practitioner had wanted us to take Molly to get a chest X ray and some additional blood work to see what was going on, because she was having the labor breathing and everything else. Well, at that point, I there was no way I could make it to the imaging center, to the dog the office, where they wanted us to go to get this done. And I was like, Okay, well, I'm not gonna be able to make it. They made her an appointment for first thing Thursday morning. And it was like, would have been an eight o'clock appointment, I believe. So Wednesday night is when all hell broke loose, and she was just vomiting non stop. She was hallucinating. It was just she went downhill so fast, and she couldn't stand. She could barely keep her eyes open, listening to her breathe. It was just it was so labored. And where we live in Virginia, I'm not a fan of a couple of the hospitals around us, so we decided on the way to the one hospital is her pediatricians office, and we had the appointment already, so we're like, I guess maybe let's stop in here and see if not, if they're not going to help, we'll go to the hospital. It's on the way. And immediately we get to the doctor's office, get her in there. They take one look at her, and they're like, there's nothing more we can do. You need to get her to the hospital. Now. I was like, okay, so they wheel her out. We get to the hospital, get her loaded up on one of the little wheelchairs, Wheeler into the, you know, the emergency room, and the lady behind the counter is talking to me, and she's just looking at Molly, and she takes our information. I hear her get on the phone, and she calls the doctors and somebody in the back in the ER, and they come rushing out, and next thing we know, 45 minutes later, she was on a helicopter life like, to UVA Hospital in Charlottesville, and that was just, it was a whirlwind. I was like, What type one diabetic? Like? What does this mean? I have no idea. I've heard of it. I knew people that had it, but I had no idea, like, what
Scott Benner 12:23
it would mean for us. Yeah, wow. So she's in DK that whole time. You think,
Allison 12:30
yeah, yeah. It hits so fast. I think as soon as she threw up on Sunday night, was when it was happening. She really wasn't it,
Scott Benner 12:37
yeah, yeah. And it went, how long from Sunday night till Thursday, Thursday, I was gonna say Wednesday, just because it was a big story. Yeah, oh gosh, so was she like, did she stay conscious? Did she end up in a coma? Like, what happened after that? Let's talk about the tandem Moby insulin pump from today's sponsor, tandem diabetes care, their newest algorithm control iq plus technology and the new tandem Moby pump offer you unique opportunities to have better control. It's the only system with auto Bolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options. Tandem Moby gives you more discretion, freedom and options for how to manage your diabetes. This is their best algorithm ever, and they'd like you to check it out at tandem diabetes.com/juicebox when you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's going to help you learn about tandems, tiny pump that's big on control tandem diabetes.com/juicebox. The tandem mobi system is available for people ages two and up who want an automated delivery system to help them sleep better, wake up in range and address high blood sugars with auto Bolus. I used to hate ordering my daughter's diabetes supplies. I never had a good experience, and it was frustrating. But it hasn't been that way for a while, actually, for about three years now, because that's how long we've been using us Med, US med.com/juicebox, or call 888-721-1514, us. Med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omnipod, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys, they have served over 1 million people with diabetes since 1996 and they always provide 90 days worth of supplies and fast and free shipping us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the. Libre three and Dexcom g7 they accept Medicare nationwide, and over 800 private insurers find out why us med has an A plus rating with a better business bureau at usmed.com/juicebox, or just call them at 888-721-1514, get started right now, and you'll be getting your supplies the same way we do.
Allison 15:26
She was borderline coma. She was in and out of consciousness. My husband ended up flying with her on the helicopter, because I was like, I need to go home. Because, you know, we had the dog, we had other stuff. I knew we were going to be staying at the hospital. I could just tell that it was going to be a bit of a stay. So our house was on the way to UVA anyway, so I stopped, got the dog situation situated. Thank God, my dad lives with us, so I already had someone here to take care of the, you know, the younger my older daughter and the dog. And so they got to UVA, and my husband said it was just, it was surreal, because they, you know, they're unloading her from the helicopter, and it's just a hallway of doctors as they're rushing her to the pick you and they got her situated. I got there, yeah, maybe an hour and a half or two hours later, and it was just so hard seeing her laying in the hospital bed, and she had been throwing up so much, they wanted to get her on the IVs get everything figured out. So we were there for four days. We got it. I mean, the staff there was amazing, and we're still really close with our diabetes educator that came in to teach us everything at the hospital. We talked to her all the time. So she's like our little angel, and the staff was amazing. I remember, we did get to witness an honor walk, which was really heartbreaking. And I looked at her, I was like, I need to get out of here. You need to get us out of here. I can't do this. But the first night in the hospital was when, that's when things kind of took the surprise. Like it said she'd been throwing up
Scott Benner 16:54
a lot. Yeah, I'm wondering on that first night, what's the feedback initially, like, what are your expectations for what's happening and what the outcomes might
Allison 17:03
be at the hospital, or the first night, like at home, when she threw up, I went about
Scott Benner 17:06
the first night at the hospital. Like, once you're talking to doctors, are they saying to you, oh, don't worry about it. Are they like, hey, we'll let you know how this is going.
Allison 17:14
They came in, they were pretty positive about everything. They're like, look, you know, you got her in just in time. They did tell us, you know, had we waited, she would not have made it. She was one of their sickest diabetics they had seen in a long, long time. So they were actually surprised at how well she was doing, which bode well in her, for her, that she was not, you know, doing worse than they would have expected. But the first night I was I stayed in the room, obviously with her. And I remember she every time she made the noise like she was going to throw up again, I was like, I would shoot up, because I had just gotten used to her throwing up. And then middle of the night, it was probably 2am the night nurse was coming in to do her check, and Molly starts kind of coughing, and you could hear what I thought was going to be her vomiting again. So I jump up and she does vomit. And it is the most disgusting stuff that came up. I mean, it was like, black tar, like, stained her lips blue, like a bluish purple. It was everywhere. And I was like, Oh my God. I freaked out. I looked at the nurse. I was like, What the heck is this? What is happening? Like, complete panic. So we're cleaning her up, and she stays pretty calm. But of course, it's two o'clock in the morning. There is no real like her pediatric diabetes doctor that we have been working with, or had, you know, taken her case, wasn't there? So she's like, well, you know, it could be she'd been throwing up a lot. It could just be someone, you know, the irritation and and some blood or something from the irritation. I was like, that's just gross. I don't know about that. And you get it cleaned up. Next day, I let her doctor know about what happened, and he had the same answer. You know, it was probably just old blood, dry blood from, you know, the vomiting. Because she was vomiting so much. I'm like, Okay, so a few days go by and she's getting better and better, and this is Saturday time frame. She's finally awake, and they want to try and get her to eat something. So we order pancakes, some other stuff, the real healthy stuff that we should have in the hospital for starting but like our sugar free syrup, and she was trying to eat, and she was just screaming in pain. And she's like, it doesn't I can't eat. I can't eat. It hurts, it burns. She's screaming. She's rubbing her chest, and everybody's kind of looking at each other, like, what is going on? So they get her in an antacid, type of suppressant to see if maybe it's an acids that are just kind of bubbling up, and she sensitive from it. Still doesn't really eat. She finally gets a few bites down, and it's just absolutely painful for her. She didn't want anything but
Scott Benner 19:49
water. Well, that's a problem, because she only drinks the water from home, right? It was, I know this is a serious story, so I didn't stop on it, but I love. Your kids, like, I only drink the water from my house. She's still that way, fancy that way. Yeah. Okay, go ahead, yeah.
Allison 20:08
We had to go home and get it, bring it to her so she she still wouldn't, like, she wouldn't eat it. She was trying to, and she kept telling everybody, she's like, No, I can't. It hurts, too bad. It burns, and she's just sobbing. And it was all that was almost worse to watch than when she was in DKA, okay, because she's awake and she's telling you, and you can tell she's in just pain, and she's got a pretty, pretty high pain tolerance, like, something is off, man. But go the next day, still not eating too much. She would only eat like a jello or a yogurt, something soft because it didn't upset her throat. We get discharged on Sunday. At this point, it's what, like, 17th, 18th, I think of February, and never got better. She was home for two weeks almost. She started school back up. We were home like one week to kind of recover, but we still couldn't get her to eat. Was the big problem, and everything was painful for her to eat. So I'm like, how am I going to send her to school? Like, what is she going to eat? So we actually had to go through and try and figure out. Try and figure out stuff that she could eat so that she'd be able to go to school. And she lived off of only Panera store bought potato soup. Okay? Again, just like home water, scrambled eggs, she would do apple sauce. And she liked her milk, but her milk had to be room temperature, so we'd have to, like, microwave it, otherwise it would hurt. Oh my gosh, yeah. So my husband like, there's something wrong. And we kept telling her, doctors were like, there's something wrong. So they were like, well, you know, it could be this, it could be that slut or heal. It's been, really, you know, lot of trauma with everything. So
Scott Benner 21:38
look, they didn't look No. Okay,
Allison 21:42
no. So we started calling pediatric gastroenterologist around the area to see if somebody, by chance, had an opening. Because we're like, there's something gastro going on, like, there's something else happening. It's not that we knew it. Yeah, no one had appointments, and we're trying to explain to them. We're like, no, she's a newly diagnosed type one diabetic. We can't get her to eat. It's too painful. There's something going on. We kept raising the alarm. So about a month after diagnosis, she has our first follow up endo appointment, and Abby, who was the nurse practitioner that she had she'd been seeing until recently, was like, okay, you know, why don't we get you an urge, you know, an urgent referral for GI and I was like, thank you. Finally, someone's listening. So they get us in the following week, and her doctor that she first saw that day was kind of given the same thing. Well, it could be this. It could be that, you know, apparently, when there's a significant amount of vomiting or certain stuff. Sometimes your your body almost forgets how to swallow and eat, apparently. So they use a speech therapist to help with the swallowing so that that maybe that could be it. Like, I don't think that's it. So he's like, Well, we're going to go ahead and do a swallow study. I was like, All right, cool. When do we do that? Made the appointment for the follow up to do the swallow study. So this is the following week, we go in and they did the swallow study. Go home, I don't hear anything. They called a few days later to let us know that she was going to need to have a procedure done. They needed her to come back in. They'd schedule everything. This is another, like, whirlwind of stuff. I was like, What are you talking about? And they said she's got acute esophageal necrosis. We've never seen this in a child. And I was like, What?
Scott Benner 23:27
What is that? Well, doesn't necrosis mean like dead tissue? Yep. What did
Allison 23:32
she throw up that? That's exactly what she threw up that first night when she was in there was the dead tissue from her esophagus. Oh, my God. So that's why everything was burning, that's why she couldn't eat. Was that it was literally just dead, necrotic tissue that had been in there her stomach acids had turned so caustic that it was almost like battery acid from the dka. Yeah, it was directly correlated to the dka. It wasn't just regular vomiting, it wasn't anything. It was tied to the dka. They had seen cases of it, and they have case studies of it for older people having this happen in association with DKA, but no one younger, and so it never was something they thought of, because it doesn't happen, right? They told us the damage, the amount of damage, was about almost three inches from the base of her stomach up her esophagus. And it was so it was a three inch section, and the normal diameter of your esophagus is between 14 to 16 millimeters. Hers was six.
Unknown Speaker 24:38
Oh, from Yeah,
Scott Benner 24:40
yeah, it was, I don't understand what I mean. I know we're gonna get to it, but I don't understand what you do for that.
Allison 24:45
Well, that's what I was. They didn't know. They had to research to try and figure out, like, best ways to do it. Because the other thing that's interesting, if you read into this, is that condition, if not caught and treated immediately, is fatal. Yeah, I would imagine so the fact that. This kid has gone for that long, because by the time we get in for our first procedure, it's been a month
Unknown Speaker 25:05
and a half, oh my gosh, yeah, it
Allison 25:10
had started to heal up. And when it did, there was so much scar tissue from it that that's why the opening was how it was that
Scott Benner 25:18
pain probably when she was eating too, yeah,
Allison 25:21
and so food was constantly getting stuck. She'd try and eat, and even, you know, she'd have her milk, or she'd have her soup, or she'd and it would get stuck and she'd end up having to throw it up, which then is aggravating things even more, because then you have the vomiting coming back up to the already destroyed tissue, right, right? I asked him. I was like, Well, what do we do? And he's like, we're gonna do some research, look into this, see what our next steps are. We'll give you a call back, but we're gonna have to really get in there and scope and kind of see what the damage looks like. So we did know that we were gonna have to go in and they were gonna have to do the scope for it, but as for treatment, we weren't 100% sure. So they did some research. They did find two other cases in adolescents and kids, and one was, I believe, a 16 year old and one was a 14 year old boy. So she's only the third documented case that they have been able to find, and they end up doing a case study on her. But they decided they wanted to get in there in scope, see how everything looked, and then go from there and maybe do a dilation and see if it holds. So we go in, you know, they have to put her under, do everything that way. And they got in there, and that's when they were they were able to tell that it was the size and the amount of damage, the extent of the damage which went all the way through her actual esophagus to the outer layers, is how significant it was. They we went through about five rounds of this for dilations to see if it would hold. The first three did not hold very well. That would they would ended up the last couple dilations that we did, they did some injections of a steroid and a couple other medications to try and get the scar tissue to break down, yes, so that her dilations would hold so she could eat.
Unknown Speaker 27:02
Okay,
Scott Benner 27:04
my God, how long is that process, from when you finally got her seen, till maybe she can eat?
Allison 27:10
She was finally, it was so it was April. Was the time frame when we went in and had the first procedure, and by June, she was able to start eating more normal foods, but she will, yeah, she lived off soup,
Scott Benner 27:24
applesauce and warm milk, yeah, yeah. God, did she lose a lot of weight during that time?
Allison 27:31
Yeah, it took a little while for her to put some, put some weight on. Okay, so, but it was, everything was soft. It had to be a complete soft diet.
Scott Benner 27:38
And this is only like, less than maybe, like 1516, months ago, this is
Allison 27:43
happening. Yeah, yeah. Next week we have a her follow up with her gi to schedule another dilation,
Scott Benner 27:49
just to see if it's holding and doing better. Well,
Allison 27:53
she's starting to get food stuck again. So we kind of just have to go by symptoms there's because there's obviously nobody can tell. So if she she knows, she can tell you when something gets stuck, or what's getting caught up and when, which I can't imagine, like, how that would feel, the panic I would have, getting food stuck. But she'll come up to me and she's like, Hey, my chicken nugget got stuck. I was like, did you get it down? She's like, Yeah, I just concentrated a little bit and had some water and it came down. I'm like, note to self.
Scott Benner 28:20
How do they talk about this? They talk about it like, as she grows, maybe that'll grow with her, or is this a problem she's gonna fight with forever? Is there a surgical intervention, like, what are your options? Probably
Allison 28:32
a problem she's gonna have forever. So this is something that's gonna just have to be continuous monitoring and care. So they said, anytime she starts to feel like something's getting stuck again, and it happens once a week or something like that, to let them know she'll have to come in. So it's just a routine at this point is we'll just have to schedule the procedure, come in, get the dilation, get the steroid injections, then go about until it happens
Scott Benner 28:57
again. Explain the dilation to me that procedure. So
Allison 29:01
they go in, and it's like a balloon. So they'll, they'll go in through her, down her esophagus, to the portion, the damaged portion, and they slowly inflate this balloon to stretch the esophagus back open to the normal size. So when we first did it, since it was six, six millimeters. They had to go very slowly, which is also why we took there was a few procedures so she could really eat, because obviously, doing it too fast, you can rip the esophagus, and then you have a major problem. So, and with the tissue being so damaged, they had to take it just step by step, slow, yeah, to get it to open. So but now that it's it's open, we at least know what to watch for. We can schedule procedures. Just reach out it's they're pretty good about it. We'll just let them know they trust Molly. They they know that she knows when things are getting stuck, and she's pretty vocal about
Scott Benner 29:56
it. So what's this like, the psychological side of this? Have you? Not even had time to dig into that yet. Like, is she having trouble with food? Like, is she like, you know, building a, what you might call an unhealthy relationship with eating. Like, Is she sad? Is there? Like, I mean, how are you
Unknown Speaker 30:12
there?
Allison 30:14
Was for her, there was at first. Absolutely, was at first. And especially, you know, she went back to when she went back to school and she couldn't eat lunch with the other kids, because if she started choking, they needed to get the piece out, or she's gonna fixate on her food. So she couldn't go eat in the cafeteria like a normal kid. She had to eat next door at the nurses, you know, next door to the nurse's office. So she got to, at least, you know, they made it fun for her. She got to pick a friend, and every day, one of her friends could come and sit and have lunch with her, but it was the same food. Every day. It was the Panera soup. Yeah, she didn't have any any stuff, so it was hard for her, and she was very fearful of eating for a while. I would think, yeah, and she would get embarrassed, because when it would get stuck, she'd have to get up and run out of the room and try and get it up get the nurse. So it was always this thing. So it was definitely, at first, very hard for her very kind of traumatizing, to say the least. So she was afraid for a while to eat certain things. And so we finally, I think, like I said, after the third the third round of dilation, she started eating some different stuff. And you know, Dr Middleton, who has been absolutely amazing, was like, you know, you can try some of this stuff now, and you can try this stuff, kiddo. Let's do these things. Let's see how we're doing. And so it really encouraged her to start trying some more stuff. And so by this past school year, she was very excited. She got to eat lunch in the cafeteria with all of her friends. So she was back to that, and she seems to have really rebounded. Okay, she hasn't really had any lasting issues with it since
Scott Benner 31:53
then, since then, during that time, how did it impact? Like, bolusing? Like, were you worried, like, she might eat something and then throw it back up and now we have insulin in there? Was that, like, a concern too?
Allison 32:06
Yeah, that was, that was definitely tricky to say the least. I mean, you have, you had the honeymooning with that at the beginning, and then when she had her first procedure done, kicked her out of honeymooning because it was just a little bit more trauma, like, obviously. So she went through that, and then we, we would dose, and sometimes she would throw the stuff up, and I'd have to, literally, like, not to be gross, but I'd tell her, please don't flush. Let me see how much came back up, so I can try and guesstimate what we're gonna have to make up for,
Scott Benner 32:35
for the insulin. Yeah. Yeah. Okay. Right? Jesus, yeah. And now you today, you would call her healed. You would call her functioning, like, how do you tell me again? How you think of it? Now
Allison 32:52
they call it just maintenance, like she's there, but it's going to be something that's maintenance throughout her life.
Scott Benner 32:57
Okay, most days, okay, yeah, most days are good.
Allison 33:01
Most days are fine. We just keep kind of a journal of times that things have gotten stuck. What it was that she ate, just to kind of keep it up for the doctor. So when we see him, or if it's gotten pretty regular, we let them know how things are. So if we need to, so it's just going to be it's going to be something just like diabetes she will have to deal with for the rest of her life. It's just always going to be there. It's not going to go away.
Scott Benner 33:22
So this whole thing that she lives with now is caused by the dka. And going back to the beginning of your story, because I wasn't 100% sure where your story was going right away. Where'd you get let down on not seeing the DK again? Like, who? Who missed it? It was the pediatrician. Yes, after a number of different visits, yes, I
Allison 33:42
ripped the doctor's office, a good one. And when I called, yeah, when I called, they were like, Yeah, we remember her, and I just let into him. And I even thought, you know, I'm not like, Sue happy, I don't want to do that, but I even thought I'm like, this, like a lawsuit, something like, You can't do this. You're doctors. We trust you. And to completely miss this multiple times. And then the nurse, especially, I told him I was like, if you haven't fired her yet, you better, because that's ridiculous. Because if she had called and just just a simple call back,
Unknown Speaker 34:10
we could have been at the imaging center
Allison 34:14
18, yeah, 18 hours ahead of this, knowing we already been at the
Scott Benner 34:18
hospital, maybe she was trying to get to the gym. I mean, you know, think she just, like, she just left and forgot to call you and didn't tell anybody,
Allison 34:27
maybe, yeah, but it's one of those, like, that's your job.
Scott Benner 34:31
You know. No, no, I'm not saying like it was, I'm not excusing it. I'm saying like it was probably something as simple as, like, a ball got dropped, or she's like, I will do it tomorrow. Like, one of those things. And, yeah, yeah. And it ended up having all this impact on your daughter's life and your life and everybody else's
Allison 34:47
exactly because we would have been at the same hospital, actually, where we took her, that's where the imaging and the other stuff was. And at that point, I suspect they probably would have told us, like, you need to get her seat and go ahead and take her next door and. I feel stupid at times looking at how sick she was that I didn't think of that. But then you I always go back to like, you see so many people go to the ER because they stubbed their toe, and I didn't want to be one of those people that, plus we'd already been in Doctor quite a few times, and they weren't concerned. To my great, I'm going to take her. Like, is it in
Scott Benner 35:16
my head? Yeah, that's it, right? Like, once you have a concern, you show it to a physician. The physicians like, oh, it's not that scary or bad or whatever it is. You think in your head, you kind of let go of that part, and you're like, Oh, this is going to pass, or it's going to get better or something like that, yeah. So when it gets more dire, you're already kind of, your notion is pre conceived, already that this is okay. This is what they expect to happen. Yeah, yeah. That sucks,
Allison 35:42
exactly, exactly. And then the other part of that is because Wednesday night was the how. That's when the violent vomiting really started. That's when it ramped up to it was just almost non stop. It felt like and I think that is really also when the most damage was done to her esophagus and what caused the aen to
Scott Benner 36:04
you, that's when it feels like nothing's all going on. Right, right, right. My gosh. How does she manage her diabetes today? Does she have a pump? Is she MDI? What does she do? Yep,
Allison 36:13
she's pumped. She's g7 and the Moby. She loves it. She's named her ocean. That's her girl. It's her best friend. The
Scott Benner 36:19
pump is called ocean, named ocean, yeah, oh, that's nice. That's
Allison 36:24
hers. And she actually, she's very excited about this. Dr de Bauer called yesterday from UVA, and they're working on, I don't have it up in front of me, but they're working on a new AI technology with tandem, and they just got approved to do studies for kids six to 13. So they asked her if she wanted to participate in the trials for this new technology for tandem. Really. She's very excited. Yeah, yeah. It's pretty cool. I'm excited to learn about it. He called me yesterday, and I was
Scott Benner 36:52
like, what? Oh, you just found out about this? Yeah, just found out yesterday. So we're super excited. Yeah, see when I spend the last year and a half telling people like, I bet you there's going to be AI technology and pumps one day. And people like, I don't think so. And now you're telling me, maybe there will be. So, yeah, yeah,
Allison 37:07
we start the case study, or the case study, we start the the trials and everything the end of this
Scott Benner 37:12
month. Okay, are they tracking her for the other issue with the esophagus too? Is that, like a thing that's so rare that they're going to keep up with her?
Unknown Speaker 37:20
Yeah? Yeah.
Allison 37:22
They did a huge case study and did presentation and submitted everything with her gastroenterologist and all that stuff. But some, they had some big convention a few months ago and submitted everything. So they had asked if she was was interested in being a case study. And of course, Molly thought it was great. She's like, I can be famous. I'm like, well, they don't use your name.
Unknown Speaker 37:41
Kid. She's like, but still, I
Allison 37:42
was like, okay, so yeah, they did a case study, and she's now in the books as the third documented case of this and a kid.
Scott Benner 37:50
So tell me something. Then, do you think that your first year or so learning about diabetes, when you hear other people talking about it, is yours much different, or is it still kind of the same, kind of
Allison 38:01
the same. I mean, I think both issues were two totally separate issues. That's just how I look at it, one cause the other. But they're managed so differently, even though one can impact the other, I guess so we kind of just handle them totally different. But I remember, which is actually how I found you. I was just in a panic at the hospital, and I was one of those people like, I have to have control. I have to know what's going on. I have to have answers. I can't just sit there. And I just immediately started researching. And actually had started listening to, I was listening to one of your podcasts, when Molly That first night in the hospital when she threw up all the caustic tissue. And I was like, I gotta figure out how to do this. And I think having the answers, we're not answers. We don't have the answers, but having the support and the knowledge when it came to handling the diabetes, we always my husband, I joked that that was the easy part, figuring out the aen, going through the procedures, trying to get her to eat, not knowing if anything was going to work, if it was going to stay. That was almost worse than the diabetes,
Scott Benner 39:02
yeah? Well, I mean, it's probably felt more emergent at the very least, right? Like,
Allison 39:07
and they had no answers. Yeah, no one had answers,
Scott Benner 39:11
because it doesn't happen very often, right? The
Allison 39:14
Diabetes is like insulin check blood sugars. This is what we do, like, they're step by step. So this one, no,
Scott Benner 39:20
well, was that direction that you got about the diabetes valuable too, or did you have to couple it with podcasts and other stuff?
Allison 39:28
Definitely the podcast with everything, and just learning everything I could about it and trying to understand we left the hospital. And, of course, you know you you leave with these little goodie bags. And when I say little, that's complete sarcasm, the giant bags of just supplies and stuff. And by the time we got home from UVA to our house, which is about an hour and a half, I had like I felt like everything was forgotten. I was just so overrun and overloaded with what to do that I called our nurse. That was our education. Her nurse. I messaged her, and I was like, please call me. And she's like, what? I'm like, I'm looking, I'm like, looking at the insulin pens. I'm like, how do what am I dosing? Like, how do I do this? It was so sweet. And she laughed a little bit. She's like, I know. She's like, it's a lot. You're gonna be okay. And so she walked us through it, and getting some of the confidence to do it, and, like, it was just hard. But the best thing we got was the sugar pixel too, which I saw on your it popped up when I was on your Facebook page for the Juicebox Facebook page, and I was like, What is this thing? Genius. I love that thing. I take it everywhere.
Scott Benner 40:34
So you have a young kid with type one diabetes, just got another medical issue. Things are going pretty well for her. She has a pump. She's doing well, what's her level of care? Personal? What's her level of care split with you? Like, how do you manage day to day? So
Allison 40:53
she's slowly getting more independent on, you know, the dosing and double checking. Like, she'll try and add stuff up herself, and then she'll be like, Hey, Mom, can you double check these numbers for me? We'll do that. She's pretty good. She was asymptomatic for highs and lows for a while, and she's finally started really noticing her lows and being able to tell what it is. And she'll do her own finger poke. The other day, she came into my office, she's like, Hey, where's my my thing that pokes. And I was like, work. Try again. What? So she's like, No, my finger poke my tester. And I was like, Wow. I was like, why? She's like, I'm just feeling low. My Dexcom says it was like, 170 and I'm like, well, you're gonna need to bring that down. She's like, I just feel off. So she's really starting to get more in tune, which is more important for me than her taking over. And you know, doing her site changes, doing all this other stuff. So I do a lot of the site changes. I do the Dexcom we do because she uses the true steel too with her her movie, so she's not a fan and ready to do that one. So I definitely do those for her. It's a whole routine. But at school, she's getting better. She'll treat her lows to make sure she has her stuff. She's pretty responsible with that. So we're getting there steps.
Scott Benner 42:05
It's a whole routine. What do you mean? It's the whole routine.
Unknown Speaker 42:09
Oh my gosh, she's
Allison 42:11
chakra, like I said, she's very particular, so she has to use the numbing cream when we do the site change with the true seal. And I'm like, you understand? Like we did months where you got the same needle multiple times a day. It has to be the numbing cream and has to sit there for 10 minutes, and then she has to breathe in and out for a few it's this, like, literally steps. It is a 30 some minute process that could probably take less than five
Scott Benner 42:34
and is she anxious, nervous about the insertion? Like, what do you think it is that gets her she
Allison 42:41
doesn't like needles. She's not a fan of needles at all. And I she just gets herself hyped up sometimes about it, yeah, and she's fine with the Dexcom. But Dexcom we first started, before she was even had the pump Dexcom, she would do the same thing, and it would just be, I think it was just a fear. And now she's, she's fine with it, like she gets sad if she doesn't have a bleeder. I'm like, you can't have a bleeder with her. Have a bleeder with everyone. That's weird. Let's not she's like, No, but those read the best. I'm like, okay, Molly, because they're gonna think
Scott Benner 43:08
you're strange. Where did you start that from? The online?
Allison 43:10
Yeah, yeah. Because I said something one day. She was freaking out because it happened the first time it did. And I was like, No, malls, it's okay. She's like, thinking, we have to take it off. And I was like, No. I was like, I've heard bleeders. Or readers, let's see.
Scott Benner 43:21
Oh, that's how you talked her into it. Now, she's like, she thinks it's better that way. Now,
Allison 43:25
yeah, she's like, it's on point. So she I'm like, people
Scott Benner 43:30
listening right now, who are they're yelling at their cars. And they're like, that's not always true. I can hear them. Oh, yeah, we've
Allison 43:36
had all these problems with our g7 Well, it's technology. It fails.
Scott Benner 43:41
I don't know what to tell you. I think sometimes people are like, you know, they have an experience and they think, Well, this is true. Like, you know, I'm sure sometimes bleeders are readers. I'm not going to tell you otherwise. I'm also going to tell you that I bet you some people have sites that bleed that don't work really well, exactly, exactly. Interesting. How people get, like, attached to the thing that happened to them. I don't know if that makes sense or
Allison 44:01
not. It does. Just let it go like it's not always going to work. It's just a saying. It's Joe. You know, we've had somewhere Molly swear was going her Dex. It was one of those way off ones where I just kind of laughed at it. It's funny, but not where we just kept saying she was low, that she was like, 65 and she was like, Mom, and I was like, in the shower, so I wasn't paying attention. She's outside with her dad. It's summertime last year, and she keeps trying to treat her low instead of doing a finger poke. She was still new into it, and I come down, and I hear the the sugar pixels just blaring. I'm like, what is happening? She's like, I can't get this low to come up. I'm like, Well, did you finger
Unknown Speaker 44:35
poke? She said, No. I was like, dude,
Scott Benner 44:38
is it possible you're not really low? And is that what ended up happening
Allison 44:42
by that time she had eaten up that she was like, 400 something. I was like, you've got to be
Scott Benner 44:46
kidding me. Well, at least she was being proactive. Exactly.
Allison 44:50
That's our tool. I was like, I'm very proud of you for taking the steps. And I was like, we forgot, we forgot one in there. Yeah,
Scott Benner 44:55
let's check just to make sure this number is real. Yeah. All right. But. You think she's doing well, though, huh?
Unknown Speaker 45:02
Yeah, she's doing really well.
Allison 45:03
She's, she's definitely come a long way. I mean, we also she is in therapy. So we did do, did start her in therapy, probably around October or so, okay, of last year, just to kind of work through some stuff. And she was, she went through a period where she was just really angry about the diabetes. And, fair enough? Yeah, exactly. Feeling different, feeling these things, just a lot of emotions that were going on. And so I went ahead and we got her in to see a therapist who's been amazing, and she's very proud of herself because she's graduated up to group therapy. So there's a small little group of the girls that do all the same age, and they're they meet and do their group therapy. So that's helped a lot. Too. Good, good. Yeah.
Scott Benner 45:42
Do you think she'll do that for, like, for a long time? Do you think she'll just, is she trying to get to something? You know what? I mean, I
Allison 45:49
you know, I don't think she's got much longer that she'll be doing it. I think she's really at a good place. It was just learning, the regulating her, just the emotions, sometimes, when she would get upset or frustrated and being honest with other people about her, like, she would get kind of shy about her devices, and would at school take off her, her go back, her go bag with her phone in, her her spy belt with her phone on, and would just leave. She didn't want to be tied down to it. So I think she's getting to a place where she's good. And she's good. And she told me, she's like, I think I'm done with therapy for a while. I'm like, Okay, well, if you need it again, it's there whatever.
Scott Benner 46:27
I mean, that's really thoughtful. Have you done therapy? Like, what made you get her to it quickly?
Allison 46:31
Her team at UVA is, again, absolutely amazing. Like, I can't say enough good things about them. And they make sure, every time we come in for the, you know, our three month check up, she meets with her dietitian, she meets with a diabetes educator. We have a social worker on the team that comes in, and so we spend time with each one of them. And the social worker had actually come in, and Molly was just kind of, I sit back, we let them kind of do their thing and talk. And she was feeling, and they were talking about some of the stuff, and she's like, Well, would you be interested in talking to someone? And so it was actually the social worker talking with Molly, and Molly just having that conversation and saying she thought that would really help if she could talk to somebody. And so the social worker
Unknown Speaker 47:16
helped get us set up with somebody very nice. That's awesome. Yeah,
Allison 47:21
yeah. They're a pretty good team there.
Scott Benner 47:23
That's awesome. It really is. But is there anything about your story that we haven't covered? I want
Allison 47:27
to make sure. No, no. My thing, like when I reached out to you, my biggest was just, I don't want another parent or another child, you know, the parent watching their kids suffer and be in so much pain, and obviously the child, you know, going through it, but just being aware, and had the doctors been aware or known, which I don't, I don't put any blame on them, because it's so rare. But because of this DKA, it's just another thing that's not known or talked about. Yeah, because it wasn't known that this is, you know, another thing to watch for. You know, if your kids complain because we kept getting brushed off, that it should, it could be this, it could be that. And come to find out, no, it definitely was not. So it's just something else
Scott Benner 48:03
difficult to swallow that. Like, somebody could have pulled out a test strip and figured this whole thing out,
Allison 48:07
yeah, yeah, be on a desk, just stick it right in there. Would have known.
Scott Benner 48:12
Yeah, no. I mean, I It's tough because I see all the sides of that argument for every one of you, which is so infrequently. Like, right? You're poor, like, such an infrequent thing to happen to somebody. Yeah, right, yeah. Can you imagine? Like, I always try to imagine the podcast of the of where the people are, like, I just went in there with a cold, and they stuck my finger, made it bleed, and stuck it on a test strip that was so unnecessary. Like, I you know what I mean, like, the how other people would feel, or how they think it's so infrequent that's not going to be that so that's not working, but at the same time, look what it would have done for her. Yeah, exactly. It's so hard to, like, keep those things all balanced in your head at the same
Allison 48:52
time, I guess. Well, that's what I haven't understood. It's, you know, I just the lack of education is frustrating, yeah, for the doctors and the understanding, and so that's when I've been very vocal about her stuff. I've always shared her story. I sat there and I pushed her diabetes educator. I had pushed or I talked to her, and she actually took the case study. I sent it over to her, even though they're all UVA, but I sent it to her, and she brought it to her boss, the supervisor, the person that oversees, I forget what fancy name he has, and she talked about it. She's like, we need to know about this. This is something, even though it's rare, we really need to be educated about. We need to know about this is, you know, important. And he completely agreed. And they've actually put it into part of their training is to discuss the acute esophageal necrosis and where it does come from, DKA. And these are the symptoms. This is what you need to watch for. This is this is what you need to be aware of, because it can happen, even if it's a rarity, just being able for one person to know, you know, Molly would have spent, wouldn't have spent a month and a half suffering, yeah, at the beginning of already having to learn and figure out diabetes.
Scott Benner 49:55
That's awesome that you got them to to put that in there. That is really great. Yeah, yeah, oh, wow. Well, I'm glad they did that, at the very least, exactly baby steps. Can I just ask you a couple of quick questions? So like, when you said you found the podcast right away and you were listening to it when she was vomiting, still, are you listening to management stuff? Are you listening to just like the most recent episode. Like, how do people dive into it?
Allison 50:23
Honestly, it just depends on my mood for the day. Like, what I feel like this, I'll scroll through, like, I'll pull it up, and I'll scroll through the description of the certain ones. And it's like reading a book or picking a novel. Like, sometimes I'll get into I'm like, That one sounds good for today? Yeah. And I work from home, so I'll just put it on the background, you know, still listening, but I'm at home working, I'll put it on listen. I remember in the hospital, I had, I had posted on Facebook just as an update on my like on my page, and I had someone text me immediately, probably immediately. It was like, five minutes after, and was like, Hey, I just saw your post. I have a really good friend of mine. Her son was diagnosed, you know, six years ago, I can get you in touch with her. And it really impressed me, because it was, like, 10 o'clock at night. I'm like, it's kind of late, you know. And she's like, No, here's her number. Can I give her yours? I'm like, sure. Few minutes later, I didn't text from this mom, and she's actually the one that told me about your podcast. Told me about this other Facebook group for moms. Look at this stuff. Check out these episodes. She was the one that really was like I was in a complete fog. And it gave me at least something to feel like I could grasp on to. So that's where I started. And I believe it was the bold beginnings one, okay, and I started there, and kind of just after, afterwards, jump around, like I said to certain
Scott Benner 51:36
stuff. I just got back from the cruise
Allison 51:40
with Apple. Look like you had so much fun. It was
Scott Benner 51:42
good. It really was. But like, I'm saying, I just got back from being face to face with people telling stories like this, so you just made me emotional, just telling me how the person explained it to you. Oh, really, yeah, because now I have this, people reach out all day long. I'm not going to tell you. Like, I'm not in contact with people constantly sending messages or putting up posts or stuff like that. Like, that's lovely and it's nice, but it still feels virtual a little bit, yeah, like being with that many people who, at some point or another, over a five day period, went out of their way to stop me to say, like, this is what this meant to me, and then to hear their actual story. Like, I actually got to sit with people and really talk to them, like, talking to you today, like it would be so easy to say Allison's daughter, she was diagnosed in DKA. She got some weird, like, esophagus thing, but it seems to be mostly okay now, and she's doing good. She's got a pump named notion. It skips all the detail that you were able to go over in the last hour. Like, to really give you, like, that feeling, and even that we're still faceless to each other while we're talking about it, right? Yeah, yeah, sitting in front of a person who sits down and says, Look, this is my story, and I hear it like I just heard yours, but they're there, and you're looking them in the eye and you're talking to them, and you can feel like that. You know what it means, like you can feel them like it's different. Right to have people you've never met before come up to you and say, Hi. How are you like, I just came here to meet you, or, you know, I just came here to meet you. But then this whole thing turned into, like, way more than I thought it was going to be, and this was awesome. And then to get a hug from multiple people who you didn't know, like you'd never met five days before, and they're hugging you and telling you, I love you. That happened to me a number of times this
Allison 53:30
week. Well, the difference that you've made, and being able to share Arden story and talk about that, and I feel like really, especially as a parent, they gave me something like to hold on to, especially in that moment when it was scary and I did know what was happening, and I'm laying in the hospital room and all I'm listening to is the beeping and her struggling to breathe at times, and all the stuff like I need something else. So when, when she said that, you having that and listening and knowing I wasn't alone, even though I felt so alone in this hospital room. It really, it was kind of like that, that comfort to hold on to right at the beginning. Yeah, we go to her endo appointments and stuff. I talk about your pocket like, I tell them all about it. I'm like, You need to check it out. If you haven't, you should recommend this. I give them the sugar pixel to recommend new parents. I go out of my I'm like, I always make sure I can tell
Scott Benner 54:18
everybody appreciate that because, you know, it's the other side of it, right? Like, is that what that person did for you? Like, I have a friend. I can put you in touch with him. That person jumped on right away and was like, listen to this, do that. Like, help, you know, like, gave you all the things to, like, get going with. Like, that's beyond my control, right? Like, I can't do that. I don't know that you and your kid are going through this. I can't come find you. You're not going to just blindly find the podcast, the bold beginning series, etc, whatever you end up finding. It just made me feel really warm that there are people out there sharing stuff with each other, because, and I think it makes me feel a little, I don't know, a little more emotional today. My point. Was because I just sat with all these people and heard face to face what it's meant to them. And every person story is different some way, yep, and the thing that the information or the community or whatever they ended up taking out of it, the thing that it saves them from is different, over and over again, from person to person to
Allison 55:19
person. Yeah, everybody's story is so similar, yet so different, and what what they get from it? And I think part of it is the community too, that you've been able to build with this and having that. And sometimes you miss that when you're on a computer and looking at it through things like that. But it's really the sense of community, yeah, that comes with it. For sure. I'm just a little extra thrilled about you can be extra this week. Do it? You deserve it? Well, I'm gonna go to
Scott Benner 55:43
children with diabetes next week. I think I'm gonna have an overload. I'm probably gonna, like, Yeah, I'm probably gonna have, like, a happiness overload this month at some point. So, oh my gosh, that's so cool. That'd be fun. It was really awesome. Okay, well, I mean, I can't imagine that this was an easy story for you to retell so soon after it already happened. And I appreciate you taking the time to do it and,
Allison 56:03
well, thank you for having me on and letting me share Molly's story.
Scott Benner 56:06
Oh, I appreciate you, know. And there's one other thing you said that I don't have enough context for to really speak about it, but I'm going to tag it on at the end here. I'm wondering if people are are people seeing more illnesses where your eyes are super bloodshot in the last couple of years, because I've now seen it happen to Arden. I've seen it happen to me. Like, I don't remember this as a child,
Allison 56:28
yeah, a lot, especially the younger kids. Yeah. This year was interesting, though, this year at school, there wasn't any big, like, pink eye thing that went on. There was ones where they're like, Oh, I think it's allergies and, but like, my nieces up in New York, they went through similar it's, it's really weird. How would you say that?
Scott Benner 56:48
I'm just telling you, like that I didn't have pink eye, ardent, right? A pink eye? No, it's just like, pink you look in the mirror and you're like, oh, it looks like we have pink eye, yeah? And like, and it rocks you, and stays like that for a week before it goes away. It's really weird. I just don't know I had
Allison 57:05
about it was like December that happened, and I ended up with, it was like a sinus infection, but it was, like, my eyes almost. It was really weird, but it wasn't really a sinus I don't know. They never figured out what it was. They gave me steroids, and basically I dropped some really good luck.
Scott Benner 57:19
Yeah, I feel like there's a lot of that happening right now. I just wonder. Like, I don't know, I don't know, but I I just wonder what's going on. Because I feel like I'm seeing it more. I'm wondering, and I'm saying it out loud to see if other people see the same thing, or maybe people are like, I don't know what you're talking
Allison 57:33
about. So we'll find out. It's like, environmental, like something in the environment, and I don't know.
Scott Benner 57:37
I have no idea. I really don't. I'm not very smart in that stuff, so I couldn't tell you this is, this is not a thing I'm probably ever figure out, but it is something I've been wondering about. So okay, we'll see what people say. Yeah, we'll find out. All right. Allison, thank you very much. I appreciate it so much. It's been a pleasure. Can you hold on one second for me, sure. Thank you.
Arden has been getting her diabetes supplies from us med for three years. You can as well us med com, slash Juicebox or call 888-721-1514, my thanks to us, med for sponsoring this episode and for being longtime sponsors of the Juicebox podcast. There are links in the show notes and links at Juicebox podcast.com to us, med and all of the sponsors, head now to tandem diabetes.com/juicebox and check out today's sponsor, tandem diabetes care. I think you're going to find exactly what you're looking for at that link, including a way to sign up and get started with the tandem Moby system, I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox podcast. If you or a loved one is newly diagnosed with type one diabetes and you're seeking a clear, practical perspective, check out the bold beginning series on the Juicebox podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over 35 years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one you can start your journey informed and empowered with the Juicebox podcast, the bold beginning series and all of the collections in the Juicebox podcast are available in your audio app and@juiceboxpodcast.com in the menu, the episode you just heard was professionally edited by wrong way recording, wrong wayrecording.com.
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#1593 Two Toasters
You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.
Stephen, 55, has lived with diabetes for 41 years and now drives innovation as the COO of a fast-moving startup in central PA.
+ Click for EPISODE TRANSCRIPT
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. You are listening to the Juicebox podcast.
Steve 0:14
Hello. I'm Steve. I'm in central Pennsylvania. I am 55, years old, been a type one diabetic for 41 years. If
Scott Benner 0:26
this is your first time listening to the Juicebox podcast and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all, look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management. Go to Juicebox podcast.com. Up in the menu and look for bold Beginnings The Diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. This episode of The Juicebox podcast is sponsored by Omnipod five. Omnipod five is a tube, free, automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes when they've switched from daily injections, learn more and get started today at omnipod.com/juicebox of my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox, the episode you're listening to is sponsored by us. Med, us, med.com/juicebox, or call 888-721-1514, you can get your diabetes testing supplies the same way we do from us. Med, I'm having an on body vibe alert. This episode of The Juicebox podcast is sponsored by ever since 365 the only one year where CGM that's one insertion and one CGM a year, one CGM one year, not every 10 or 14 days ever since cgm.com/juicebox
Steve 2:24
Hello. I'm Steve. I'm in central Pennsylvania. I'm a CEO and VP of sustainability for a startup here in in Central PA I am 55 years old. Been a type one diabetic for 41 years. So wow,
Scott Benner 2:45
41 years. How old were you like in your teens, like 14 when you're when you're diagnosed, my 14th birthday present, literally, on your
Steve 2:52
birthday, I had the cake, and the next day felt terrible. Was drinking a lot. Of course, the typical story you hear, drinking a lot, peeing a lot. Lucky for me, my older brother had type one, oh, and so he immediately was like, I think you're type one. And so went to the endo and was diagnosed. So for him, he's about, what is he about? Nine years older than me, eight years older than me. He was diagnosed when he was 11, but essentially, they didn't catch it. He was in a coma for three days and survived. So, so, yeah, so, so yeah, that was my, my 14th birthday. And yeah, yeah. So it was obviously not a, not a great birthday president. So,
Scott Benner 3:43
yeah, geez, I'm sorry your brother is okay afterwards. Yeah,
Steve 3:47
yeah, he's, he's still alive and kicking and doing well. I'm trying to think now he's probably had type one for 50 some years. So, so, yeah, yeah.
Scott Benner 4:00
How long had he had type one before you did
Steve 4:03
trying to think 11, I would say probably 1112, years.
Scott Benner 4:09
Okay, so he'd had it for a decade or more by the time you were diagnosed, yeah, all right, yeah, I believe so. And your parents saw it coming maybe a little better the second time.
Steve 4:19
Yeah, yeah. I mean, he saw it like, you know, immediately. And then my mom's like, oh yeah, this is a problem, yeah. And then went to the Endo. So for me, luckily, at least they knew the routine. Had an endo already, because my brother John had already, you know, gone through this routine. So, yeah,
Scott Benner 4:37
okay, okay, all right, so your diagnosis. Do you remember much of it at all? Or is it a thing that's kind of lost in your memory? It's, it's
Steve 4:45
pretty lost. I mean, I remember doing the, you know, the injection in an orange and that kind of stuff, and the mph and regular routine and that kind of stuff. I think we remember correctly. I think we, we start out. We both were kind of doing the peace stick, and then we just got a blood glucose meter, like, right around when I was diagnosed, and it was like, looked like a brick. It would take, I don't know, a couple minutes for it to actually read your your blood sugar. So, so yeah, I was kind of the front end of it when it comes to technology. So okay, did you find it difficult to grow up with? You know, I did at the time, because I've got three older brothers, so my the next oldest who is not a type one, playing football, baseball, other things. And at that time, without CGM and without pump, it was, you know, most kids, you're type one, you're not playing sports. So that was somewhat of a disappointment, but, but outside of that, I think I did a pretty good job of just, you know, making it through with did a lot of hunting, fishing, that kind of stuff, outdoor stuff, yeah, instead of the typical sport route, for the most part, I kept it under my, you know, I didn't really talk much about it with other people, except for close friends, and then it was a little easier to keep it somewhat under the radar, because you didn't have a pump and those types of things beeping and, you know, make alerting people to it. So was
Scott Benner 6:15
it important for you that people didn't know and, I mean, is that something that you learned from your brother, by any chance?
Steve 6:21
No, I, I mean, I think it was from a standpoint to keep it quiet. Was was in my head, just from the standpoint of I didn't want people to think less of me or think that I couldn't do things because I was type one. So I kind of, you know, that wasn't the first thing that came up. Now, once I get to know somebody, and, you know, had a conversation, I had no problem telling them, but it was more of a, you know, just someone new you talk to, I'm not going to throw it out there and start talking about my type one and what I'm doing.
Scott Benner 6:53
So I never know exactly how people mean it, like, you know, I've super closed off. Nobody ever knew. I wouldn't tell anybody. Or I just, you know, you're not one of those people who runs up to somebody. I was like, Hi, it's nice to meet you. Guess what? I have diabetes, right? Yeah,
Steve 7:07
yeah. And even, I mean, I was, I was kind of interested. I haven't listened to the podcast you had you posted, or the person who did it, woman did a recording not long ago about living in corporate America. And I did that as type one, yeah, and I, I did still. I mean, I keep my pump, my sock, I don't, you know, have it hanging off my bell. I don't try to show it off. And part of that is, I think, because I'm I don't want the first thing to we talk about to be about, you know, oh, what's, what's wrong with you, what's going on, what's that thing attached to you? So I'd rather meet the person, talk about me, and then, you know, as they get to know Him, then, yes, yeah, yeah. And type one, get
Scott Benner 7:49
them to know you before you start introducing this thing that they don't have any context for.
Steve 7:55
Yeah. I don't want a pity party. Is mainly what it comes down to. I don't want people thinking, Oh, poor you so, yeah, that's so I don't, I don't know if it's, it's not that I'm ashamed of it, and in many ways, I'm proud of it, just from the standpoint of, you know, I, I know I lived through it. I've got a BS, I've got an MBA, almost an MS. Been in corporate America, and so it didn't inhibit me from, you know, from doing anything I wanted to do, from a, you know, a career standpoint. But I just don't like it being the first, first thing out of the gate. It makes a ton of sense. I completely understand. And then later it's okay you can like you, let the people in you want to let in. Yeah, exactly, exactly. Is it that after they know you, you feel like, after they know you, they see you're a capable person, that maybe they won't jump to those same conclusions. Yeah, I guess that might be part of it. Not even a thing you're thinking about that closely. No, no. I mean, you know, once I'm, you know, once I get to know you and we start talking, I might, I might talk to you about it the first time I meet you. If there's something that pops up that, like, of course, if, if the CGM is screaming and, you know, there's an alarm, oh yeah, by the way, you know, type one. But it might be a couple weeks if, until, you know, I get to know the person we're talking at work, or whatever, and I might just mention to him, like, look, type one, if you hear beeping, that's probably my pump or my CGM. And you know, just, you know, also, just know if, if I'm incoherent, you know, you probably need to call someone or please help. Yeah, yeah, although my wife would probably, you know, get the alert and be, you know, texting me. Are you okay? So I've got a funny story about that. It was, I had to fly to Italy for for work, and got there, and I don't know what happened. I think was just wonky where I don't know if Arden has dealt with this, or if you you've run across it, maybe you've heard stories of it, but, but the time change, the time change going from here to Italy, and then the pump, you have to reset the time. And I think I have the dawn phenomena. So I have. Got a lot of basal in the morning, and I think it hit me, and then I reset the time, and it just screwed up my my blood sugar, so I just crashed. I was like, you know, like 50, and I'm sitting on a train and Italy, and everything's beeping. I'm down in glucose tablets to try to get back up. And it was like two in the morning in the US, and my wife's, like, texted me, are you okay?
Scott Benner 10:26
Oh so, so you had a more aggressive settings for morning time that suddenly it wasn't morning time anymore for you. Yeah, yeah. Well, that's interesting, because, because those impacts come from your your sleep rhythm, yeah, oh, yeah. I never thought of that before. That's really interesting. Yeah.
Steve 10:45
What was cool to me is like, okay, my wife's sitting in Pennsylvania, and I'm in Italy, and she knows what my blood sugar is, and you know, it's telling me I need to eat something. So
Scott Benner 10:56
I know I'm on a train. I'm eating a seat in front of me. I don't know what to do.
Steve 11:01
Yeah, that was about it. That was one of those real lows where you're like, sweaty, you're you're shaking, you're like, Okay, this is, this is a bad one. I need to start, you know, settling up and getting the sugar in me. So,
Scott Benner 11:11
yeah, wow. That's interesting. It really is. I was gonna ask that was gonna be my next question. When you met, when you mentioned your wife, like, we talked about, like, how do you tell people around you, but like, how do you decide when you're dating people? Like, is it a similar cadence about, like, let them get to know you a little
Steve 11:26
bit first? Yeah, yeah, I think so. I mean, it's, you know, it's been so long since I've dated someone so but, yeah, I'd say that in the early days that was, that was part of it to, you know, kind of somewhat keep it on the down low initially, and then, and then bring it out and make sure they're aware of it for many reasons. One, just because they they need to know and and you need to be honest with them. But two, also from, from a medical, you know, emergency reason. You know, back then I've had lows. So
Scott Benner 11:54
did Lowe's used to come more frequently before CGM and stuff like
Steve 11:58
that. Yeah, before I got on the pump and had CGM back in the mid trying to think now, mid 90s, I had two significant, significant events where one, I was unconscious. My wife had to call the ambulance, and that's a funny story, because we were on a third story of a house, and they came up. My wife had already started giving me sugar, and I was eating it. And by the time they got to the house and came up, I was conscious, and I was feeling fine. I think it was up to like, 60 by the time they got there. And they're like, Well, we have to stick to the hospital. I'm like, No, you don't like, I'm fine. And they're like, No, but it's, it's, it was, I don't know if it was a legal issue back then or if it was just their liability side of things. But anyway, so they put me in a stretcher and took me down three flights of steps, and I'm like, Look, I can walk down by myself. You guys are gonna drop me down the stairs, yeah. Also, I think you're just taking me so you can bill me for the ride well, and that was, that was an insurance story, and that back into that one word. So they did that. I get a $600 bill in the in the mail for the ride, yeah, and so, and I have insurance, so I called the insurance and I'm like, this should be covered. And she's like, Oh, explain it. And she's like, Oh yeah, that should be covered. And that was my first, you know, dealing with the insurance company deny first, and hope you, you know,
Scott Benner 13:22
yeah, hope you go away. But also, at $200 every flight of stairs is a little steep, and
Steve 13:30
that was like, probably 90 what? 96 maybe. So I would have told
Scott Benner 13:35
the insurance company, listen, you do what you want. I'm not paying it. But I told him I didn't want to go. So you want to fight with him. You can go ahead and fight with him about it. You it. Yeah, exactly. That's crazy. You have some notes here that are interesting, like you have a bunch of different allergies. Today's episode is brought to you by Omnipod. We talk a lot about ways to lower your a 1c on this podcast, did you know that the Omnipod five was shown to lower a 1c that's right, Omnipod five is a tube, free, automated insulin delivery system, and it was shown to significantly improve a 1c and time and range for people with type one diabetes when they switched from daily injections. My daughter is about to turn 21 years old, and she has been wearing an Omnipod every day since she was four, it has been a friend to our family, and I think it could be a friend to yours. If you're ready to try Omnipod five for yourself or your family, use my link now to get started. Omnipod.com/juicebox get that free. Omnipod five Starter Kit today, Terms and Conditions apply. Eligibility may vary. Full Terms and Conditions. Can be found at omnipod.com/juicebox, 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 to be called. Old 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 orders 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, Comm, slash, Juicebox or call 888-721-1514, get your free benefits check now and get started with us. Med, Dexcom, Omnipod, tandem freestyle, they've got all your favorites, even that new islet pump, check them out now at us. Med.com/juicebox, 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,
Steve 16:07
yeah, and, and that was the primary reason I wanted to get on, you know, mainly just to kind of inform people, just if they run into something similar, because it was pretty crazy for me. Fast forward, so 90s, I late 90s, I went on, I think was IRR 1000, the Animus, the first animus pump on several animus then jump to T slim and CGM, so Okay, was monitoring and doing pretty well of my my blood Sugar over the last probably 1012, years and in 2000 I suppose 2019 late 19, I started having situations where, like I would go out to eat or even eat at home, and like my blood sugar would spike to 300 400 like after dinner, and I could not get it down. I was dosing and dosing and dosing. Finally, I realized that the the inset site was just getting overloaded, so I started actually adding shots to the, you know, I use the pump and and shots to try to get me back into, you know, somewhat a range, but it would, it was almost impossible. And it was the first time in my life where I felt like, okay, there's something wrong, like, insulin isn't controlling this that went on for about two months. And then I started out some other symptoms, and I started writing them down. And so then I started Googling, like, okay, high blood sugar, diabetes, these symptoms, flush. Remember what else I typed in and up, pop celiacs. And so it's like, Oh, that's interesting. So did some research and cut out gluten immediately. Okay? And, like, a week in two days, and boom, blood sugar is fine. I thought, Well, I must have celiac. So, so went to my Endo, who I had, really good endo at the time, he tested me for everything. I didn't have the genetic markers for celiacs. Tested me for a million other allergies and different issues. Couldn't find anything. And he's like, Well, if cutting out gluten is working, that's good. But he said, I don't know what what the issue is okay. So went gluten free, and was doing really well in about, like, right five, six months later, I started have issues again, and they weren't as drastic, but still having situations where I'd eat, it would spike, it'd be bad for a couple days and then come down, okay. And then finally I figured out a I made myself pesto and had gluten free pasta. It was basal garlic and olive oil, and I put walnuts in it, and I knew I had eaten basal garlic and pasta all time, gluten free pasta, and had no problems. So then cut out tree nuts, and it reduced the problems further. And then I've been really good for the last, I'd say, four or five years, but once in a while get I'll have some issues where I'll go out to eat and something will happen, and I'll think I've gotten glutened, and then it'll be a couple days and it'll go away. And finally, figured out from another experiment that it was also onion powder, which made absolutely no sense to me, because I eat onions all the time, and that doesn't impact it.
Scott Benner 19:29
But the powder, like just bought at the store, shake on onion powder, yep, okay,
Steve 19:33
yep, yeah, and it just is bizarre, but, but yeah, so. So from the standpoint of, like, if I eat at home most of the time and I regulate everything I put in my blood sugars are, are great, you know, probably be below the sixes. Anyone see right now? I'm in mid sixes, and that's because once in a while, yeah, I got to eat. I get something that. Doesn't agree, and then I'm for like a week, I'm fighting it, you know, bring it back down. So a week, it's, if it's gluten, it's a week, it's like, I could almost time it. It's like a week in two days, and I'll be dosing a ton of insulin to keep it in check, and then I'll send them crashing, because at that point where I go from having the gluten impact to it finally going away. Then, of course, then I'm overloading, you know, because I actually up. I have a different basal program setting for from when I get gluten and then when I come off it. I gotta make sure, you know, of course, I go back to the original program. So,
Scott Benner 20:40
that's really interesting, that you have it down to such a science when it happens. This episode of The Juicebox podcast is sponsored by ever since 365 and just as the name says, it lasts for a full year, imagine for a second a CGM with just one sensor placement and one warm up period every year. Imagine a sensor that has exceptional accuracy over that year and is actually the most accurate CGM in the low range that you can get. What if I told you that this sensor had no risk of falling off or being knocked off? That may seem too good to be true, but I'm not even done telling you about it yet. The ever since 365 has essentially no compression lows. It features incredibly gentle adhesive for its transmitter. You can take the transmitter off when you don't want to wear your CGM and put it right back on without having to waste the sensor or go through another warm up period. The app works with iOS and Android, even Apple Watch. You can manage your diabetes instead of your CGM with the ever since 365 learn more and get started today at ever since cgm.com/juicebox, one year, one CGM.
Steve 21:53
Yeah, it is. And the interesting thing about is, when I think about the fact that if I didn't have a CGM, I'd have no clue what the heck was going on?
Scott Benner 22:00
Well, you lived without them, you know what it is to Yeah, yeah.
Steve 22:05
So, so that's and that's the thing like you you're doing three, four sticks a day, and you wouldn't see the ups and downs and where things are dropping and and where I could look at the clarity and, like, watch it, you know, and look at what the data says, and say, Okay, I ate at this restaurant on Sunday night. It spiked to 300 and then I'm fighting it for the next week and couple days. The other thing that I haven't figured out yet, and I think this is the case, is all it's it's almost like it delays both the insulin and the sugar acting. And so, you know, I'll eat a 40 carbs, and, you know, put in, you know, depending on what what it is, put in, you know, four units to offset, and then it'll spike. But then also, no, go low later. It's like the insulin doesn't actually hit my bloodstream till later.
Scott Benner 23:05
But it also feels like the carbs aren't doing it as well. Yeah, yeah. Everything feels like it's happening more slowly.
Steve 23:13
Yeah, yeah. It's weird. It's weird. Have you ever spoken to
Scott Benner 23:17
other people like, do they signal to you that that's happened to them?
Steve 23:21
No. And I've, you know, I've, I'm trying to think about, I've talked to, I guess, two different endos and a couple primary care people, and I, you know, they don't, they've never heard of it. And essentially, what, what I've come to is, I think I'm gluten intolerant, because I actually did go through the endo endoscopy and, you know, and verify whether there was damage, and they didn't find anything. And so, so I believe it's not celiac, I think it's a sensitivity, which a lot of people, I guess, for a while, were questioning whether it was real or not. But I you know, clearly, there's data that shows there's something going on with my body that's real,
Scott Benner 24:01
yeah. I mean, it's not your imagination. Like, especially when it's so repeatable, like that, I would imagine, yeah, you feel like, you feel pretty confident you're seeing what you're seeing. How often does that happen to you? Like, are you able to avoid the gluten for the most part, or is this the thing that happens with some frequency? For
Steve 24:16
the most part, I can, and it's, it's something that I've become, like fanatic about it, like we have two different toasters. We've got two different jars of peanut butter, different butter, because my wife, you know, of course, eats bread with gluten in it. I do not and and it's the with gluten free. The definition is below 25 parts per million, which is a very tiny, tiny amount of gluten okay? And so I just have decided I've had issues the those first couple of years where I think I'm I'm gluten free, I'm gluten free. Why am I having problems? And I start thinking about, like, okay, she just put her bread in that toaster, and I put my bread in that my gluten free bread, and the same toaster right out. After irwal, it's actually getting contaminated. Yeah, it's getting cross contaminated. So we just need to be cognizant of that and put together the right ways to get around it. So yeah, I'd say in the last two to three years, I it happens maybe once every four months or so where I'll go out to a restaurant and you say it's gluten free or whatever, and most likely it's cross contaminated somehow. So you
Scott Benner 25:25
know from your blood sugar first,
Steve 25:29
yeah, yeah, yeah, that's, that's the teller. Is
Scott Benner 25:33
that exhausting? Or have you set up a system that pretty much allows us to not be overwhelming in your life?
Steve 25:39
That part is exhausting, from the standpoint, I have not figured out yet how to adjust the pump to counter the what happens, right? Yeah, so that week, in a couple days, it's a Yo yo, of like, you're, you're, you know, you're 300 you're, you know, you're 40, year, 300 year, 40 year. And in trying to get the right insulin to carb ratio, or time it the right way, like I Pre-Bolus. I was Pre-Bolus, and well before I listened to the podcast, and I still do it, but then when I do it with when I'm gluten, I don't know that might be the wrong thing to do. I don't know. That's and that's
Scott Benner 26:23
all over the Yeah? Like that Katy Perry song, you're right when you're wrong, you're you're out, you're up when you're down, you're black, when you're white, you're wrong when you're right. Is that Katy Perry? Sorry,
Steve 26:33
I don't know, but, but I that is, that's how it feels. Yeah, yeah, yeah. So, so, yeah, it's definitely a roller coaster of, hey, do you
Scott Benner 26:44
have kids? Yeah, yeah. How many kids
Steve 26:47
you got? One? Zach, he's, he's 31 Oh,
Scott Benner 26:52
does he have any issue? I don't know why I thought your kids would be younger, but okay,
Steve 26:56
we, I hadn't had him when, when was young. So he's, he's He's fine. He just had his daughter's two and a half years old. So we're, I'm kind of like, holding my breath right now with that, because obviously nervous about, you know, it will it manifest with her. I mean, I think that the weird part with us, within the family is we never looking back, both on my dad and my mom's side, we can never figure out what side it came from, because no one had type one that we know of. And even on the you know, I listen to the podcast pretty, pretty often, and I know your typical questions are like, okay, but you know, what about other autoimmune and I, other than arthritis, I don't know of anything else on either side that
Scott Benner 27:44
no one else has, like the celiac stuff or the sensitivities,
Steve 27:47
none of that. None of it. And that's what's it's just bizarre. Yeah, yeah. So my assumption is my parents mix some genes together that usually don't get mixed together and cause major problems.
Scott Benner 27:58
So listen, of all this. All I hear is that when you're toasting bread, you don't have to wait. Like, you have two toasters. There's no waiting. Oh, do
Steve 28:08
you're trying to spin the positive on it. Scott, yeah, that. I mean,
Scott Benner 28:11
honestly, like, there's got to be some good that comes. Also, what a great title for a podcast episode, two toasters, no waiting. Stevo, you have to say something pretty good to get me off of that. All
Steve 28:22
right? Well, I'll try to think about something as something to come up with that's, that's sexier, yeah,
Scott Benner 28:27
it's wordy, so it might get me, but, um, but that's just, I mean, I just, I feel terrible, like, when you hear people talk about their other issues, I'm not ordering them in my mind. Like, this one sounds worse than this one, but eventually, like, you've got diabetes, it's enough already, you know what I mean. And then you mean, and then you got, you know, another thing, and I got two toasters, and you're getting gluten, I mean, you know, and then you got to live with people who don't believe that's true. I would imagine, right? Like, there's enough people in your life for been, like, you're not a large gluten Shut up. Like, right? Doesn't that happen too?
Steve 28:56
I have not heard anybody say that directly your face. And I think usually when I tell people about it, I tell them, like, look, here's what happens with my blood sugar when this happens. And it's, you know, here's the real data. It's not, yeah, me just saying, Oh, my stomach kind of hurts, right, right? And I'm sure that happens to people, and they're being totally honest, but I think it's a little harder say, oh, what happens? Oh, my stomach hurts when that happens. Well, I just,
Scott Benner 29:20
you know what I mean, man, like, it's like, it's like, one of those things. Like, it's bad enough. Sometimes you say diabetes to people, and they go, what'd you do to get that? And then, you know, you're not really alert. Nobody's allergic to bread. Shut up. Like, there's people who think that. Like, even, like, you know, I've had conversations with people I'm like, Look, you know, unmanaged thyroid could really lead to, like, you know, some depressive stuff. And like, you know, I don't even know how to put it, like, you can make people short tempered stuff, like they have no that's just them, not like taking responsibility for themselves. Like, it's just, it sucks having so many things that open you up to that stuff, even if you don't get doesn't get said to your face, you know, at some point somebody's turned their back and been like, Steven thinks he can't eat
Steve 29:59
bread. Yeah, it's. Yeah, that's well, and that is the thing with type one is, as you know, back when I was first diagnosed, there wasn't many people had type two. You didn't hear much about type two, right? So to back then, it was like, Okay, you have juvenile diabetes. You know what they called it then, and versus type one today. But as you got into the 90s and early 2000s it was like, Oh well, you're a diabetic. Oh well, you should, you know, eat better and lose weight, and you'd be fine. You'd be like, Yeah, awesome. Not, yeah, it's not,
Scott Benner 30:31
that's great. So my life's not taxing enough. I gotta listen to this from you now. Yeah, thanks, doctor, whoever. So, so you're a grandfather. That's crazy because you, I think it's that you sound young, Steve, that's what's throwing me off a little bit.
Steve 30:45
I yeah, I there are times where I pinch myself and say, oh my gosh, I'm a grandfather, but,
Scott Benner 30:52
but it's in your head you're worried about that baby. Now, is your son worried? Or do you think it's a thing that's on you? Mostly
Steve 30:59
they don't seem as worried as I am. And I think both my wife and I were both like, Oh, are you going to have kids? And you know, they're like, oh, yeah, we're
Scott Benner 31:08
Why don't you just get a parrot?
Steve 31:12
Yeah? So, so yeah, they seem to be fine. And you know this, I think the cool thing now is the fact that, like, when I think back with my my a one, CS, when I was, you know, first five to 10 years, were probably in the sevens at best, and probably the eights. But it was mainly because you're testing three times a day. I didn't take the glucose monitor with me because was a big, you know, machine, and hump it around, yeah, yeah, yeah. And I was taking two shots a day, and, like, I think about that now and think this is just nuts that I survived. So I think now if, if she were to get it, at least there's the solutions, there's the devices, the technology to to make the Yeah, yeah. Because I think about, like, I'm, I'm starting to see some of the wounds don't heal as quickly, and my my eyes aren't as good. I go every year, and they say they look great. But I think about, you know, like, like, with Arden it, you know, the way you've, you've treated it, and she's treating it, she's not going to see any of the complications that that I could see. So that's where I don't get as nervous about it. Now,
Scott Benner 32:29
yeah, you don't have any, like, diagnose complications. No,
Steve 32:33
no, but I've got the typical stuff where, you know, it's just things don't heal as quickly. I get sick easier it I don't get as well as quickly. And some of that's just getting
Scott Benner 32:44
old. Yeah. How old are you? 55 so I don't know, like, it could just be that we just went on this cruise together, like a bunch of listeners, yeah, I saw it was awesome. Yeah, it was awesome. But, you know, like when we were setting it up, it was, hey, you know, people would like to sit and have dinner with you. And I said, Yeah, I'll sit every night and have dinner with people. And we did right like i Five o'clock rolled around, and I sat down at a table with 10 people, got to know them, and ate. And you know, a sit down meal. It was, you know, five o'clock to is about two hours. Usually, you sat there, and then, you know, the person coordinating the trip said to me, Look, there's more people that want to eat with you than we have space. Would you eat twice a day? And I said, Well, I'm on a GOP. Like, I'll sit with them, but I don't think I can, like, I can't eat, and then just like, pretend I didn't eat and eat again. Like, I can't do that. So, you know, I said, but yeah, let's do that. Right? So turned out, then it was five o'clock, sat down, spent a couple hours talking to people. Get a 15 minute break. 715 sit down. Another hour, 45 minutes talking to people like, and I was like, that'll be great. Like, I can absolutely do that, but I would get up, like, I got up on Monday morning. We got on the ship, right? You hustle on. You set, set up your table. Intake, people, see everybody, blah, blah, blah. Like, do all that stuff, meet out on the deck, like, you know, chat with people everything. I was tired when it was over, but it was fair enough. It was good day. I got up on Tuesday, I spoke for three hours, then I went to lunch, sat with some people at lunch. Then I went out on the deck, sat with a family for a little bit, just chatting like it wasn't crazy. Then I had a two hour talk, and then I went right to dinner, and then I did the second dinner, and I got back that second night, and I thought, Uh oh, 30 year old Scott answered the question, are you going to be okay doing this? Not 53 year old Scott. Because in my mind, I'm like, Yeah, I'm just, you know, I could do that. Well, man, by Friday night, we were talking, like, privately, and she's like, Hey, listen, you know we're gonna do this again next year. We're gonna spread your time out a little better. And I was like, yeah, she's like, You look tired. And I was like, I'm exhausted, and I'm just talking, and you know what I mean, and it still takes a lot out of you, like, sitting, engaging people. You. Really listening to them, accessing your memories, talking, et cetera, like I felt like, if there was a meter on me that said calories on it, you could have watched it drop while I was speaking. And normally, you lay down, you wake up the next day, and you're like, right on, let's go again. But I got zapped, I guess is the way to put it so then, in the middle of the trip, when everybody had time off, and they're like, we're gonna go aboard, like, you know, we're gonna go here, we're gonna go there and do their excursions. I gotta be honest with you, I canceled my excursion, which broke my heart, because I was going with people I really wanted to be with and meet and spend more time with than I was able to so far. But I slept the whole damn day instead, like everyone's running around all over Mexico. I'm in that cabin just asleep, like trying to catch back up again. So maybe it's just, you're old man. Well,
Steve 35:48
there's the age thing. The other thing I'm assuming you're probably pretty extroverted. I mean,
Scott Benner 35:54
yeah, being around people doesn't make me tired. No,
Steve 35:57
not at all because, because that's I'm I'm kind of more introverted. We do, yeah, well, we do some testing on the business side of like, okay, what are your temperaments? And I'm kind of right in the middle. And I do know when we go to conferences, and there's just conference we go to in San Francisco, and it's like three days of it's like speed dating, but you're like, you're going talking to investors. So you do, like, 20 minute, you know, gig with an investor, tell them what you're doing with what you need. That, by the way, in my boss is, is one of the best in the world at it. But even he at the end of three days, and he's a lot younger than than me, actually, he's the same age as my son. He's exhausted too. Like just kind of talking to people constantly, just tends to
Scott Benner 36:46
take it out of you. So on the last night, they moved the meal times, and this one couple didn't get the text, so I'm done with my meal. I'm gonna go up to my room, pack my bag like it's over, like I'm gonna go pass out, wake up, get off the ship the next day, and I'm walking out of the restaurant, and they're walking in, and I made eye contact. I was like, Hey, what are you guys here getting dinner? And she paused, and she goes, Yeah, with you. And I was like, Oh no, no, no, no, no. But I was like, okay, like, let me go up to my room. I gotta pack my bag up real quick. Let me get changed. Let's go meet like, I think there was a Starbucks on the ship. I'm like, Let's go sit like, I can sit like, let's talk. You know. I'm like, you guys go grab something in the interim, because I I'm not eating again. And so we did that. And when I got down to them, the first thing I said to them was like, Look, I'm running on adrenaline at this point. I was like, so I'm gonna say some crazy while we're sitting here, maybe, and maybe not. I was like, just take it all with a grain of salt. Like, if I say something crazy, wave a flag at me or something. I was like, because I am now just, like, I'm on autopilot now, like, just running, like, purely on adrenaline, I take your point. Like, it's, it's not easy, yeah, yeah. All right, well, you're old. That's what we got to on
Steve 37:59
that. Yeah, old and diabetic. I think the diabetes does have something.
Scott Benner 38:04
I'm sure they both are having an impact. But what are your outcomes like now? Like, where does your a 1c sit? Like, what are your excursions look like after your meals? The
Steve 38:11
last one was six, five. I'm typically in the low to mid sixes. If I keep, you know, if I keep the gluten in, in control? Yeah, I can dial probably some things in better, probably just the basal better. I'm got some wonky stuff with it in the afternoons. Right now, I'm trying to figure out. But you it's just, you know, you just gotta keep playing with stuff and trying to right, nail it down. You've
Scott Benner 38:35
said a number of times, like, I listened to the podcast, or before I listened to the podcast, like, when did you find it? What is it brought for you?
Steve 38:42
I probably maybe it was two years ago. I don't know how I ran across it might have been. It was either Facebook or, I don't know. I can't remember for sure. Yeah, I started listening to it, and it was kind of funny. And then hopefully you don't take this the wrong way. But when I listen to some of the early ones, it's like, Wait a minute. Wait a minute. You haven't dealt with a diabetic that's, you know, in his in his 50s, and some of the stuff going on, I can't remember what the exact one was you're talking about. And then, as I've listened to the later ones, you definitely have have, I think after you've probably talked a lot of people that have had diabetes for a long time, you know, make better, understand some of the long term issues, but, but, yeah, I listened to it pretty consistently when we were redoing a house that we were moving into. And then now, like every day, what I try to do, I try to walk three times a day, because that also helps the blood sugar, breakfast, lunch, dinner. And usually at lunch, I'll do an like, a half hour walk and listen to, you know, the next podcast. So, I
Scott Benner 39:47
mean, I know that when I started, I really just thought, if you've heard this, I'm sorry. But for other people, like when I started making the podcast, it was January 2015, and my. Initial idea, which was terrible, was that I was going to take my most popular blog posts and just read them into a microphone. Because I thought, like, Oh, these blog posts, everybody says these are the helpful ones. Like, these are what really helps. Like, I'll just make them available on audio. That was my first thought. I did it. It was stupid. Like, I think I got 20 minutes into the first one, and I thought, oh my god, I wouldn't listen to this. Why would anybody else listen to this? Like this is just ridiculous, you know? And then the kind of Craziest thing happened before I could even re consider what I wanted to do, I got a guest. This guy, Adam Lasher, was on American Idol, and he had type one, right? And his uncle's, like, Carlos Santana, and I somehow got him to be on the podcast. And so then I was like, Oh, I I talked to I don't know how good or bad it is, like, I have no idea it's, like, the first time I've ever interviewed anybody in my entire life. And so, like, I did that, and I thought, oh, there's value there. Like, he said things I didn't know. But I think that if you go back from the beginning and listen through it, which, I mean at this point, might take you a bit, yeah, but I think what you hear is me just, you know, like a stone, like rolling down a hill, collecting moss. And, you know, I'm just, I'm hearing things and expanding what I understand about all this. And just happens. It happens almost a little slowly, but hopefully, if people came along for the ride, then they they learned right along with me. I almost sometimes see myself as like an avatar, like, for you guys, I'm learning while you're learning. Like, yeah, you
Steve 41:35
know. And I agree. I think the big thing that I typically, I mean, what I like about listening to it is stuff. What I was hoping with, what I brought up today is just some person out there that's like, you know, people think they're crazy because they're talking about gluten. They're like, Yeah, this is happening to me, and maybe have some better ideas how to handle it or what to do with it, but, but it is, I think that's what I like about listening is you hear different type one stories about how they're diagnosed, what their agencies are, how they're managing it, what's working for them, what's not working for them. And I think you ask the right questions. And, you know, to your point, I think it's with any job, it takes you a good year or two to kind of get your feet, you know, settled, and figure out exactly how best to do it, and then you start really, I think, excelling. And probably that that was the same with you of when you went from the blog to the podcast and took you a while to get settled and figure out, oh, how do I really run
Scott Benner 42:31
this? Yeah, what is all this? It took me, I'm going to tell you, like, it's 200 episodes. And when I got 200 episodes in, I thought all the information, generally speaking, people need, you know, to take care of themselves at a base level, is in these conversations somewhere, yeah, you know. And then basically, I pulled them all together, and I just made that Pro Tip series, because I started thinking like it's unreasonable to ask somebody to list the 200 episodes, to call out all the information they need. And I started becoming aware that some people are podcast listeners. They just like hearing people talk to each other. Some people are just like, No, I heard, if I listened to that Pro Tip series, like my a, 1c, will go in the sixes, like they don't give a about the podcast. They want to hear that information. And I was like, Oh, we got to start gathering that together in places. And now, you know, I looked up the other day, I have 26 different series that are filled with different information, like in places, and I'm proud of that. I can't believe that it's come as far as it has. As a matter of fact, Steve, I'll tell you something, you know, sometimes I say something while I'm recording, so that I'll actually do it all. Right? So here's the thing only you're gonna know until it happens. It happens. Ready, okay, all right, I'm gonna start a second podcast that just going to have the management stuff in it, and I'm gonna make each season of the podcast one of the series to try to get around the limitations on the Apple podcast thing. Because right now, you'd have to go find episode 1000 to hear the first episode of the Pro Tip series, and then the next one, the next one, the next one. You know they're in a line because I reposted them in order, but most of them aren't like that. They're spread out. So there'll be a second feed that will probably start with bold beginnings, I think, and I'll put that series up maybe twice a week until that whole series is up. I'll call that season one, then I'll go to season two, put up the pro tips, they'll go to season three, put up a different series, and I'll just keep doing that, like moving forward, and then people can just go back to their app, go to the different season and that's how they'll be able to get to the different series.
Steve 44:40
I think that will be helpful. Matt, just, just with gluten and celiac, I was trying to, like, dig through what you had. I don't have enough, by the way. Yeah, there was, I think I only found, like, three or four episodes,
Scott Benner 44:54
people come on to talk about it, yeah. I wish more people would, hopefully they'll reach. Out, that's what I
Steve 45:00
was curious, whether they have similar issues as me, if they do get glutened, I just, you know, I don't know it's, it seems like probably do, but, but I don't, I'm not sure, yeah, so
Scott Benner 45:12
tough, because it is, I mean, it's a niche inside of a niche inside of a niche, you know, yeah,
Steve 45:16
exactly. There's probably, like, point 00, 1% of people you know that have all the same issues. So us lucky ones, I'm not lucky. So, yeah, so, well, I think that's good idea. I think it'll be interesting to to follow it.
Scott Benner 45:33
Yeah, no, I just think it's going to be also for the people who really don't want to hear me talk into you know, they don't want an after dark episode, like, right? They don't care. I know you like it. I think you're smart, by the way. I think this is a pretty good podcast, whether it's about diabetes or not, you know. And I do hear from a lot of adults who tell me that just listening keeps them the way they keep putting it to me is it connects them to diabetes without making them focus on diabetes. And they find that their outcomes are better, but they don't feel like they're spending a lot of time thinking about it, and that listening to the conversation somehow makes that whole thing cohesive for them. And it sounds like you might be doing the same thing actually, because you listen pretty regularly.
Steve 46:15
Yeah. I mean, I think there's just just a lot of different ideas. I mean, everybody thinks no one knows all the answers, right? And, and I think the, I think you, you probably know it well, is that there are so many variables in this thing we try to control that it's, it's almost impossible, right, to address everything. And then you start hearing different ideas about, like, Okay, this how I handle stress, versus this is how I handle gluten, or whatever the topic is, and you get different ideas, and you're like, oh, yeah, I never thought about that. I need to adjust my whatever basal Bolus carb ratio. I think that the one thing I didn't really fully understand my new protein actually, I guess I knew more about fats than protein, and like listening to that stuff, like, oh, okay, I didn't even think about, you know how to adjust the for protein. I just did my carb counts. And, yeah, it wasn't really fatty. I'm good, right? Then you end up like, you're high or you're low, and you're trying to figure out, like, why? Yeah, I did the carb counts. What's going on. So
Scott Benner 47:16
it's always something like, listen, the other day, Arden was like, I'm not a tic tac bender. I'm like, you know, they have carbs in them, right? Yeah. And she's like, what? And I'm like, she's like, they're just, they're little. I think she said they're little. And I was like, I know, but there's a, there's a, there's some car value for each one of them. Like, don't get me wrong, like, pop in three Tic Tacs in your mouth is, you know, I'm really not going to be a big issue one way or the other. But if you get on, like, a, you know, on a Jag, and the next thing you know, over the next handful of hours, you've done a box of tic tacs. I was like, which, by the way, now, you remember Tic Tacs used to be 79 cents. They're like, three bucks now, or something like that. But, um, so if you can afford Tic Tacs, and you're and you're going crazy on them, I was like, you know, that box could end up having a fair amount of car presented. And, yeah, you know, so yeah, if you don't hear somebody say stuff like that, you don't always think about it. It is,
Steve 48:08
yeah, it is. It is kind of interesting. Because, I mean, when I think about my parents weren't, how do I put it? They weren't that involved in my, you know, my treatment. Maybe, you know, they took me, the endo said, Okay, you got to take your shots. Here you go. Yeah. And the way, my mom, my mom's Italian, so of course, she's all about the food and so the way, instead of, like, trying to figure out, okay, how better do I adjust your insulin or make sure you your blood test, your blood test is right, or whatever, she would just cut sugar from everything, oh, probably saved me from a lot of complications later in life, because we couldn't, you know, you couldn't control it as well then, because you didn't have the pump and didn't have the CGM. But that was her method. Is like, Okay, cut sugar out everything. You're not eating sugar. And I remember probably the early 90s, I ran into a kid who had just gotten a pump, and he was, like, drinking a sprite. And I'm like, What are you doing? He was type one. And he's like, Oh yeah, he could eat sugar. You just gotta, you know, dose, right? And I'm like, You're crazy. Like you're gonna die young. You're kind of, it was my thinking, you know, and, and really, of course, he had probably a good Endo, and kind of pushed him on the pump early and understood carb counting. Yeah, exactly, exactly. So, yeah, it was kind of interesting, living across these different segments of the research going well, then the doctors catching up to it, the endos finally starting to push it, and then, you know, gets to the patients. But that's, I mean, the endos I've had, of the what five I've had, like, only one of them was good, you know, the other, the other ones were either marginal or just terrible.
Scott Benner 49:53
So did you learn things like listening to this podcast? Did you like learn management stuff that you're like, I've never heard of that before. Sure. I think
Steve 50:00
by the time I started listening a lot of it, I had down. I think there's just different nuances. Like I said, the with, like, the protein, the fats, that kind of stuff, that's a little more on the edge. But I had the carb counting down. I had the basal down. My basal is pretty good. And as you know, if you get those down, that's at least, it's the baseline
Scott Benner 50:23
game, yeah, I mean, I It's my expectation, because you just said you started listening maybe a couple years ago. I'm like, I don't know how, like, a guy in his mid 50s diabetes, since he's 14, like, at some point this has got to, like, intersect you somewhere. You know what? I mean,
Steve 50:36
what's ironic is the one end of who was a real asshole, like he would, he would just you go in and be you know, why aren't you doing this? Why don't you do that? You're gonna die. You're gonna it was just like, by the time I left the doctors, I just felt like, well, I was gonna just go put a bullet my head. Because, you know, this guy says I'm gonna die next week, because I'm I'm not doing it exactly his way, you know. And and in some ways, I couldn't stand the guy, and the other ways it did kind of push me, like, to start thinking about this stuff and and probably about that time was when I got on, done on the Animus and started that, and I did the I had Dexcom two for a while, and I'm so mad that I didn't stick with it. I had it for I tried it for a couple months, and I just like, I'm so I hate having one thing. You had an early CGM, and you bailed on it. Yeah, yeah. And I kicked myself to this day, because that was probably late 90s, early 2000s so if I had stayed on and I definitely would have been in much better management shape. And then, from the pump side of it, I was on the pump for quite a while. And I kept, I kept harassing my brother. I'm like, Look, you got to get on a pump. He's like, you know, he's still doing, doing the shots. And finally, I think I got the CGM. And then I went like, Sean, I'm like, Look, John, this is, you know, you got the CGM communicating with a pump. It's, it's like, this is rocket science compared to what we were dealing with. And he finally jumped on and I think he got a Medtronic and
Scott Benner 52:08
he's still using stuff now today. Yeah,
Steve 52:10
he jumped over the T slam because he was having a lot of problems with the glucose sensors the old Medtronic one. Yeah, I called him the one day, and he's like, Yeah, I finger stick myself like 15 times today. And I was like, Okay, I'm on the Dexcom, and I think that last time I fingers stick was, like, three months ago for calibration. But like otherwise, I very rarely have to get, you know, a blood sample.
Scott Benner 52:38
They were so far ahead of the curve with that CGM they they got out there, and it changed so drastically when Dexcom came so and they were kind of, yeah, they were up behind for a while. I guess right now they're getting ready to, like, launch that simple era CGM in in, yeah,
Steve 52:53
the endo just told me, he's like, I he's like, I'm not gonna tell you what pump to use, but he said, I really like the Medtronic. And I was like, wow, I, you know, I like the T slam, I'm good. Where I'm at, I'm, you know. And it was funny, because I was talking to him about, and there's, you know, it's, this is consistent, I think, throughout your show. So I forget what I was asking him about, I guess we were talking about GLP and and some other things. And he's like, Well, look, Steve, you don't need to do anything like you're, you're great. And I'm like, Well, I'm, you know, in the mid sixes, I'd like to be below six. He's like, look, anything below seven, you're, he's like, you saw the one sees of mostly other people that come here, like, you're like, knocking out of the park. And I'm like, Well, I don't feel like, I
Scott Benner 53:37
don't play. I don't understand that at all. I'll tell you, like, I don't understand the idea of like, Don't worry, there are people doing worse than you, so you don't have to try what exactly, yeah, also, you know, God, you said something a minute ago that, like, really made me think about something, and then I didn't want to cut you off, so I let you go, and I let you go, and I'm not going to be able to remember what you said immediately, just how it made me feel. So I am always thrown off by the things I don't know, like, I don't understand, if you're not sitting here right now thinking, like, there's so much happening that I'm unaware of, like, how to do things, different ideas, better thoughts, like that kind of stuff, like, and then you learn something in the future. I think it was probably about the CGM, right? You said, like, oh, I kick myself now because, like, you had that thing in your hand, like it was there, you know what I mean, and then, okay, you made a decision, like you didn't have enough information. Maybe it wasn't where you thought it was supposed to be yet, and then you lose all that time in between. I find myself thinking about that so much like, what could I be doing right now that I am going to regret not knowing about the future. I don't know if that's a mental illness or what it is, but like even that's why I think when and now I'll open myself this up to somebody complaining at me on Instagram or something like that. I see all the bad parts about what AI might be like. I really do. I promise you, I could sit and complain about it and tell you it shouldn't be another thing. Control of rich people and blah blah guy. I have all the complaints everybody else has too, but when you stop and just think about it, like, imagine knowing more. That's all I'm saying. Like, and being able to integrate it quickly, like we all think we know everything. Like, that's a human it's just a human fact. Like, no people walk around doubting themselves all the time. When they do, that's almost a mental illness. You know what I mean? Like, yeah. Like, you just, you believe, you know everything. Just like when you reach 16, you're like, I'm the best I've ever been. This is awesome, yeah? And I just think, like, can you try to imagine how your personal conversations, how your business life, how decisions about things you're doing around your house? Where to hang out. I don't know where to hang something. Where to, you know, put up a new wall. If you're putting up a wall. Like, if you had all the information and it was quickly accessible to you and made and you could just have a question, and the answer would come, how much better things would go, or at least how much more accurate they might be. And, like, just imagine, like, back then, if you would have, like, I don't know, said, like, Hey, I'm gonna stop doing this now, and a voice would have come to you and went, No, no, no, no, keep doing that. Yeah, yeah, that's that's a bad idea, yeah, yeah. And here's why I know you think you know you know everything, but, uh, here's four things you don't know. And I don't think that's very specific to diabetes. It is just sort of the way my brain works. I'm always wondering, like, what is it I don't understand, you know,
Steve 56:28
and I'm the same. I'm the same way. Now, in that that case, what exactly turned me off? I can't even remember at this point, and I think my maybe part of it was and I do get annoyed with it. Now, my wife was asking me something the other day, like, Okay, what, you know, I was, I think it was, it took shower, and I had to change out a sensor or something. She's like, how do you, how do you, like, they track all this and like, well, you know, the the insets you're, you know, three days, maybe you could stretch to four that, you know, the sensors are 10. If I fill the T slim, it's 300 and I go through this a day. So that's like, you know, six or seven. She's like, do you have like, a spreadsheet? No, I don't, but my
Scott Benner 57:14
blood sugar starts going up, and I think my sets getting old.
Steve 57:19
But that's I do. I do, I tend to wonder whether that was part of it, where I was just like, I just don't want another thing to have to, like, track to me. And at some point you just mentally get exhausted of like, Okay, I gotta, I gotta do this. And when I travel a lot, it was, it was a real pain in the butt, because I worked for a Sugar Company, and I was traveling all over in Europe and US and and like, it's like, okay, what do I need to pack? What do I need to take with me? And I had a couple issues where, actually, this one was more recent, where i i went to Canada grab the bottle of Novolog. But I had grabbed the the new bottle, and I had grabbed another bottle that I had taken it down to, like, I don't know, like, 40 units in it. Okay, so get to Canada, my pumps just about out. Go to refill. I'm like, Oh, I don't have enough insulin to get me, get me through the week. So I'm freaking out. Call the endo in Baltimore, he calls up to a pharmacy in Montreal and and says, you know, puts in the prescription. And this is the cool part. I heard you talking to Canadian last week on the podcast, and you were kind of harassing them about, you know, what, what insulin do they have? But on the other side of the coin I walked down, bought a month supply of insulin cash, yeah, for like, 50 bucks. And I was like, you know, this shows how crappy that old medical debacle is in the United States
Scott Benner 58:59
of America, that it's so, just so inexpensive, right? Yeah,
Steve 59:03
it just shows you, like, if they can make a profit off 50 bucks, and they're charging 300 you know, to insurance carriers, and yeah, it's just,
Scott Benner 59:12
it's just, yeah, my daughter's had diabetes for a long time now, and I've been around in this space for a long time here in that complaint, the same complaints, like, they're very valid complaints, you know, about how everything works. And there's people like, oh, it's gonna change this time. It's gonna change that time. I remember, was it back in 2016 or 2020 when did they screw Bernie Sanders? I forget, but like, Bernie Sanders is getting ready to run for president. He's out, like, stumping about, like, insulin prices. People like, now it's going to change. I'm like, No, it's not. It's not, you know, like, it's just it should, and I want it to, I'm with you, but it just doesn't seem to work that way, you know, like somebody, somebody is going to get in the way of this and put a stop to it along the
Steve 59:58
way. There was, I won't say, the. Company, so I don't get myself in trouble. But one of the insulin companies posted something on LinkedIn. This is only, like, five years ago, six years ago, and this woman, you know, was like, Oh, we get affordable insulin to people who need it. And and I, I got it, and I was like, Look, I've been a type one for what at that point me, it was probably, like, 35 years, or whatever, and this is BS, because you you guys, are taking advantage of people. And you know, you've got lobbyists in place that that influence the politicians who put the laws in place that allow you to overcharge for for insulin, and the post was taken down like within seconds. And I never saw anything again of that company trying to say they were, you know, they were taking care of people, because I was right after that. I don't know if you heard about the kid who was, think he was a dishwasher, like Perkins or something, didn't make much money. Was type one couldn't afford insulin.
Scott Benner 1:00:59
He's the boy that tried to move, he tried to move to Florida, and he and he passed away there, yeah, yeah, the young guy, yeah, he's, I remember that,
Steve 1:01:06
yeah. And it's like, it just that just makes you sick, like you just think about the fact that, because of the way the laws are written and what the companies are allowed to do to make massive profit, you're killing people literally.
Scott Benner 1:01:22
And my point is, is that if you think that that's just, that's just a switch, somebody has to throw, like, there's a tangled web around that, around everything political and, like, I mean, all this stuff, like, to your point, like there's money and power at the top of the of the pyramid, right and then, and it's just so convoluted, purposefully convoluted all the way down to us that you start thinking like, well, if I unravel this, all this has this has to happen. That happens. You can't make all those things happen. Because every time you try to push a lever one way, there's somebody else on the other side of it making money, who's like, oh, no, you can't do that. Well, I make money there, or that's what's keeping this business open. And then, I bet you, if one of them was willing to come on here and speak freely, they'd say, look, we got to make money too. Like you want the medicine. Like, I bet you that would be the argument at some point. Like you want it, we got to make it, and I got to hire and also you got to hire bright people, and those people want more money. And, like, it's, I mean, you could probably argue with six different ways from Sunday. Is my point. That's not my point. My point is you're not changing the way this works.
Steve 1:02:24
You could say it's the DS or it's the RS or whatever, but it's, it's all of them, and it's the lobbyists that are able to do what they do, and no one's going to change the laws because they are. Whoever's in power gets the benefits of that. And so yeah, that's why I said
Scott Benner 1:02:41
power and money, because the powerful people want to remain powerful, and people with money want to keep their money. Yes, yeah, yeah, and make more of it. And there's no end to more. And if you and listen, I agree with you, like the success of etc, but if I came to your house today and I was like, Steve, hey, I'd like to give you $1,000 you'd be like, All right, that's awesome. I go. Unless you want 2000 you wouldn't go. No 1000s. Good. No two makes sense to me, and I will, would you like $200,000 now here's the catch, if I give you $200,000.55 people you don't know are going to lose, you know, money, you might be like, Oh, no, I don't want that, but I do need $200,000 like, it's just everyone's got a line. And I think when that's the truth, like thinking that you're going to stop the way this all works is like saying you're going to stop people from wanting money or power. And I think the whole world's run off of money and power. So yeah, it is. I just think it's, I think you're, you're saying, If only those people who were powerful and rich would stop wanting to be powerful and rich. But I also think if I made you powerful and rich, you'd be like, I want to be powerful and I want to stay like this. So I don't know like, I don't know how to like. And there are some people who don't feel that way. I saw an article the other day about some woman, old, old, old lady in her 90s. I wish I knew any of her details, but I guess her husband was a billionaire, and he's gone, and she left like his money to some medical facility, medical school, and now people who need it like perpetually, forever and ever, will go to the school for free because of that. And I was like, Man, that's awesome, but you notice, but you notice she didn't do it till she was 90, yeah, which
Steve 1:04:32
is, which is kind of funny, because that's where you start. Like you started thinking about, if I had a billion dollars, like you could, there's no way you could even spend it within the rent of your I do
Scott Benner 1:04:43
really believe that. I think there's a I'm gonna sound like a hippie for a second here, but like I do think there's a cap on how much money makes a difference to you. Yeah, you need to be able to pay your bills. I think most people would agree. If I could pay my bills, have enough of a cushion where I wasn't worried, maybe I could go on. A vacation once in a while, maybe my car doesn't have a big hole in the floor. My people around me are safe. We're eating quality food that we can afford. I don't need more than that stuff, you know. I want a safe place to live, like, that kind of stuff. Like, I'm not saying like, I don't think people are like, No, I want to go out and buy a Lamborghini tomorrow, and then next week, when I get tired of it, go buy a different color Lamborghini. I don't think most people care about like that. Yeah, you know, yeah, but I don't know, but, but enough people do. And those people are, man, they're playing for keeps. They got it all, you know,
Steve 1:05:35
and they're in the news every day. So, yeah, it's hard to ignore. It really, is it, is it, is it is, oh, I the one thing I was kind of laughing about when you're talking about, ai i, one of the talents I had and still have, is I am very good at figuring out what keywords to put into Google to find something quickly and accurately. You
Scott Benner 1:05:57
have what they call Google. Foo, yeah, yes, yes. And
Steve 1:06:01
my, my boss is, like, the one day we were this is, you know, four or five years ago, he's, like, it was just amazed. I just like, you know, did something, found it so quickly. And so we were talking about AI a couple months ago, and we're talking about how to implement it at the company here. And I said, you know, my one talent is being taken away,
Scott Benner 1:06:24
because that's No, no, no, your your new talent is going to be talking to AI in a way that gets you way quicker, gets you Yeah, it gets it doing what you want it to do. You can talk to it wrong and not end up where you want to be.
Steve 1:06:36
That is true. You get, you got to say no hallucinations, so you make sure it's actually accurate information and not just what someone typed
Scott Benner 1:06:42
in. Don't make anything up. Don't do this, but not even that low. Like, I don't mean ask it a question to get the answer you want. Like, I'm not trying to say, like, trick it into saying what you want it to say. I'm telling you. Like, there's a way to, if you use it enough, you'll see there's a way that you have to talk to it to make sure that it's thinking the way you're thinking. It's almost like, how do you translate your desire to it, to understanding
Steve 1:07:05
the way our IT? Guy explained it to me is, is, is, have a conversation with it. Don't, don't be doing keyword like, you know, yeah, talk to it like you would talk to a person, which actually, then you should be pretty good at it too. But that's, you know, that's, that's what he said to me, like, you know, look, you want to ask it questions, like you would, uh, you know, you're, you're across the table and, you know, having a cup of coffee, versus, here's the five keywords I want to I want to know.
Scott Benner 1:07:32
So I agree with that. I think that's kind of a beneficial way to do it, all right. Well, I'm going to stop the recording, but I have another question for you about about something and then we won't bore people with but I appreciate you doing this very much. And thank you very much. I think it was awesome. I appreciate you reaching out if other people have knowledge about celiac or want to talk about it. I hope they reach out and come on. So
Steve 1:07:52
yeah, yeah, great. Talking to you, yeah. And definitely, all the people who have gluten issues definitely call Scott. Speak up. Yeah, tell our story.
Scott Benner 1:07:59
Awesome. Hold on one second. For
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