#1594 Molly's Game

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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
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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Stephen, 55, has lived with diabetes for 41 years and now drives innovation as the COO of a fast-moving startup in central PA.

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

Scott Benner 0:00
Welcome back, friends. 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

me, 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 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 this episode of The Juicebox podcast was sponsored by us, med, us. Med.com/juice, box, or call, 888-721-1514, get started today with us. Med, links in the show notes. Links at Juicebox podcast.com. 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 podcasts 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 if you're looking for community around type one diabetes, check out the Juicebox podcast. Private, Facebook group, Juicebox podcast type one diabetes. But every. Everybody is welcome. Type one, type two, gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox podcast. Type one diabetes on Facebook. Hey, what's up everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording, doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit it. You want rob you.

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#1592 After Dark: Tripping Through Type 1

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.

Ashlyn, 27, returns after 3–4 years; she first shared on After Dark 450 about psychedelics, concerts, and diabetes—now reflecting on how they’ve helped her.

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

Scott Benner 0:00
Here we are back together again, friends for another episode of The Juicebox podcast.

Ashlyn 0:15
Hi, I am Ashlyn. This is my second time on the podcast, I just kind of wanted to reach back out, because I feel like I've come a long way in, like my own understanding of type one

Scott Benner 0:29
if you're living with type one diabetes, the after dark collection from the Juicebox podcast is the only place to hear the stories that no one else talks about, from drugs to depression, self harm, trauma, addiction and so much more. Go to Juicebox podcast.com. Up in the menu and click on after dark there you'll see a full list of all of the after dark episodes. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. This episode of The Juicebox podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next.com/juicebox this episode of The Juicebox podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management, imagine fewer worries about Miss boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses. Learn more and get started today at Medtronic diabetes.com/juicebox this episode of The Juicebox podcast is sponsored by the twist a ID system powered by tide pool that features the twist loop algorithm, which you can target to a glucose level as low as 87 Learn more at twist.com/juicebox that's twist with two eyes.com/juicebox. Get precision insulin delivery with a target range that you choose at twist.com/juicebox. That's t, w, i, i s t.com/juicebox.

Ashlyn 2:18
Hi, I am Ashlyn. This is my second time on the podcast. I just kind of wanted to reach back out, because I feel like I've come a long way in, like, my own understanding of type one. And then I just wanted to kind of talk about something that I love, which is concerts, music festivals and stuff like that. I'm really active on, like, a lot of different diabetes forms, and I see this, like, question asked a lot, so I just kind of wanted to put my two cents, even if nobody really wanted that, that's

Scott Benner 2:51
okay. I wanted it, or you wouldn't be here. What was your episode? It was the after dark about psychedelics. Yes. Okay, hold on one second. I'm gonna pull it up so people know which one it was? 450 does that sound right? Okay. Episode 450 after dark, psychedelics. Do you remember what we talked about? I mean, beyond the obvious? No.

Ashlyn 3:10
I mean, I, I had reached out to you around this time because I was, I had moved to Colorado, and I was having, like, an extreme amount of lows from just the altitude change, and then I pushed me to get a pump. And now I've been on a pump for, like, I just did my first renewal. So like, five years, four years,

Scott Benner 3:29
that's a while then, right? Are you still using psychedelics?

Ashlyn 3:33
I do on occasion, I just, it's not, it's not something you do frequently. So I have here and there, but not a lot.

Scott Benner 3:42
So can you tell me how you got from in 2021 when we recorded, I guess we probably recorded in 2020 probably went up in 2021 and how did you get from there to where you are now? Like? What was your experience using them that, and how did it shift to this? What are you like, done? Or are you like, No, I

Ashlyn 4:03
don't. I don't think anyone. I mean, you can be done. I don't view my relationship with stuff like that as like, Okay, now I'm done. I mean, if I wanted to, I would, it's just not. I've been so busy as a person that it's just not at the front of my brain. Yeah. So to just like recap, in the last, like, however long, because I think it was 2021 when we recorded, I was living in Colorado, kind of doing, like the bud tending, like working in the weed, cannabis industry stuff. Then I moved back into to Miami. Around 2022 I got into this, like, Music Festival stuff. I ended up landing a job at, like a company that does, like music festival merchandising, so I have to go to a lot of these shows and events

Scott Benner 4:50
for work. Okay, nice. That actually sounds fun. It is

Ashlyn 4:53
fun. My day to day job is emailing, a lot of emailing, but the concert tickets are great

Scott Benner 4:59
because. Yeah. So, okay, so back then you're smoking weed, doing psychedelics. Sometimes, could you tell somebody, like, what got you going with them? And besides your life being busier, what changed?

Ashlyn 5:12
I'm old or older, and I'm also, like, working full time going to school. So that's like a 60 hour a week workload. So less time for fun, less time for psychedelics, I guess still time for weed. I moved back to Colorado, and I work remotely now. So we are in a weed friendly place. We

Scott Benner 5:33
certainly are, and Miami, it does not sound like a place I'd want to live. For some

Ashlyn 5:37
reason, it's terrible. I moved back just to be closer to family, and within like a like, five seconds, I was like, Oh, I can't do

Scott Benner 5:45
so what were you getting from the usage that you either felt like you needed and learned you didn't need or needed and got like, do you see what I'm saying? Like, if it was, yeah, I feel like I remember our conversation. If I would have asked you back, then you would have told me how important all of this was and what it was doing for you. Like, so did that stop, or did you change?

Ashlyn 6:06
No, I think in like, I'm probably not the only one that feels this way. I've seen a lot of people say that you kind of just get to a point where you you kind of know what that does and where it brings you, if that makes sense, like, I feel like a lot of the stuff that I wanted to get out of that, or the things that I was trying to process Emotionally, I kind of processed them in a way, and that couldn't have been done without a the psychedelics and B therapy from, like, a real licensed therapist,

Scott Benner 6:38
right? That is what I'm leading towards, like I'm trying to figure out, because I, you know, I watch from a distance the conversations around like psychedelics for trauma therapy, and I don't know a ton about it, but I am super interested in whether it all works out. And, you know, becomes kind of publicly available easily, so you feel like you had stuff and you got through it.

Ashlyn 7:01
I have been diagnosed with CPTSD, and I do feel like psychedelics and talk therapy and time really helped. And honestly, a lot of that was surrounding type one, so I just kind of had to the only path through that kind of stuff is

Scott Benner 7:21
through it, yeah, yeah. You don't get to skip right or go over, no.

Ashlyn 7:25
And so honestly, what psychedelics did for me is just kind of, like, I wouldn't say, like, remove blinders, but you're able to be in your brain in a way, like it's like a vacation from yourself, is how I've described it. Okay, I'm still me. I'm still, you know, I still have the same problems, but sometimes you're able to see things from a different light and correct me if I'm wrong, like somebody fact check me. But I have seen people saying that it does increase the amount of dendrites in your brain, which is something that, like a lot of people are theorizing that it helps your brain make different connections. Okay? And I feel like a lot of the experiences that I've had, taking psychedelics and dabbling in other things would support that, and I still do psychedelics. It's just not, I'm not sitting there being like, Okay, I need to think about these things. Like, most of the time I'm at concerts, I'm partying.

Scott Benner 8:25
When you say psychedelics, like, specifically, what are you taking?

Ashlyn 8:28
I mean, I've done psilocybin, LSD, MDMA, the only things that I haven't really wanted to try or touch is any kind of ketamine. DMT, anything like that. I feel like anything that messes with, like, my field of vision, like that, I just

Scott Benner 8:44
don't want it. And it's interesting, isn't it, because there are ketamine clinics now, yeah,

Ashlyn 8:48
I know a lot of people who use it recreationally, and they it just, I would do it in a clinical setting, but it just doesn't look like a good time. I mean, you're taking, like, cat tranquilizer.

Scott Benner 9:01
You're like, you found my line I asked our overlords to describe, actually said, explain, in an elementary way how psychedelics can aid in trauma therapy. It specifically points out psilocybin. It talks about what trauma is about, like a deep emotional mark, like you're stuck in a moment, that kind of thing. And it says it gives you four ways that psychedelics may be able to help, and it talks about like helping the brain unstick the trauma. Trauma can get stuck in the brain like a scratch record. Psychedelics may help lift the needle, so to speak, so the brain can play like a new tune. Psychedelics often make people feel more open, safe and connected. This can make it easier to talk about scary memories and therapy without shutting down or panicking. Some psychedelics seem to quiet down the parts of the brain that scream like danger. So even even when you're not in danger, which can help people feel calmer while processing old pain and it helps, it says, to build new pathways. Psychedelics can help the brain build a new thought pattern instead of always thinking, I'm not safe. My fault and things like that, is that your finding

Ashlyn 10:03
so I feel like the last bullet point you just stated is most of what I feel. So it has really just helped me, like, see things in a different perspective, like, something that happens, especially with LSD, is you get this feeling of epiphanies, so you'll you'll have a thought, and you're like, Wow, this is really profound. This is really you know something, and then it kind of leaves you. But I do feel that it allows you to, like I said, like when you when you take a vacation, and you come back and you, you, you walk back in your house, and you're like, damn, as my house always smells like this, like it's very similar to that where you're like, This is the same place I've always been, but now I can kind of see small differences which allow me to process this fully.

Scott Benner 10:48
Yeah, I hear what you're saying that's pretty awesome. I have to tell you, like, I don't feel like I'm burdened by trauma. But every time I hear somebody talk about stuff like this, I think, like, it does sound interesting. I have to admit, it really does sound interesting anyway. So you wanted to talk specifically today about going to concerts with type one and Is that, am I right? I have that? Yeah. Okay, all right. So tell I mean, this is your idea. So tell me why, what made you feel like it needs to be talked about.

Ashlyn 11:16
I, like, I said, on, like, a lot of different like, type one diabetic forums. I'm on your Facebook group, Reddit, other Facebook groups, and I just see this question asked over and over and over again. And I've gone to legitimately 15 or more music festivals, and so I've had everything that could go wrong go wrong. I had a security guard accidentally, like, break a vial of insulin when they was going through security one time. Like, I just anything that could have happened. I've probably

Scott Benner 11:49
done it. You have, like, a checklist. Do you have rules? Do you have things you know to do that help people? Like, what is

Ashlyn 11:55
it I I definitely do feel like I have like a ritual in a way of of what to do, and like, how to prepare, how to pack. I do feel like a lot of people don't realize that they can reach out to like, Ada coordination and stuff like that before an event. I didn't know that for multiple years, and so I until I started working in this field. Now, I kind of do reach out to ADA coordinators just to be like, hey, like, Hi, I'm gonna be there.

Scott Benner 12:20
So at each event, like you're talking about festivals, not necessarily just like a concert at a BAS a basketball stadium or something,

Ashlyn 12:28
I thought, I mean, no, there. There is an ADA coordinator for those as well,

Scott Benner 12:31
everything. So how do I go about that? Let's say I'm gonna go see a comedy show in Jersey. And the venue, you know, I'm is gonna tell me, I don't know. I'm, they're going to want me to put my phone in a bag and lock it up. And I'm like, oh, no, I need that because, you know, it has my CGM on it. What are the steps I take to work that out?

Ashlyn 12:48
So you can definitely just, I would just call the venue and just be like, hey, you know, I have a couple questions. I have a disability, and I'm going to need, like, X accommodations. Do you ever run into a

Scott Benner 13:00
situation where you start explaining it to them and they're just like, them and they're just like, I don't know what you're talking about. And no, we don't do that. And then you or do you find mostly that they understand and and they can help you through it. Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system. The mini med 780 G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings, without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep, they felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that. Learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox the brand new twist insulin pump offers peace of mind with unmatched personalization, and allows you to target a glucose level as low as 87 there are more reasons why you might be interested in checking out twist, but just in case, that one got you twist.com/juicebox, that's twist with two eyes.com/juicebox. You can target glucose levels between 87 and 180 it's completely up to you. In addition to precision insulin delivery that's made possible by twist design. Twist also offers you the ability to edit your carb entries even after you've bolused. This gives the twist loop algorithm the best information to make its. Decisions with and the twist loop algorithm lives on the pump, so you don't have to stay next to your phone for it to do its job. Twist is coming very soon, so if you'd like to learn more or get on the wait list, go to twist.com/juicebox. That's twist with two eyes.com/juicebox. Links in the show notes, links at Juicebox podcast.com. I

Ashlyn 15:20
reach out prior to an event, usually the admin, who run, you know, whatever email or contact, they'll sometimes they'll be like, Oh, I don't know, or, you know, they'll just bounce me around. The only problems I've ever experienced is, like, going to the event with, like, specific security

Scott Benner 15:41
people. What do you mean? I'm not sure what you mean by

Ashlyn 15:44
that. So like, let's say I'm going, like, one time I went to like a club in Miami, and we went to go, it was like an outdoor event. And so the the lady was like, oh, you know, I have to check your bag, and I have the insulin pump. And then they kind of look at that, and they're like, oh, you know, they don't, they don't experience that often. And so the woman kept telling me, you know, you can't bring that in. You had like, what is that? And so I got into an argument with her, because I was like, No, this is a medical device. Like you I can't take it off. You can't look at it like, you know, like, right? Just let me through. And she was like, No, you have to leave. And I was like, Are you sure you want to do that right now? And so then I was like, let me speak to a floor manager. And so as soon as the floor manager walked over, I explained, and he was like, oh, and he just raised her hands up at her, like, come on. And then I just went through,

Scott Benner 16:30
right? So you just find that you can, if you don't pre plan, there is a possibility you're going to run into somebody that just doesn't get it. And they're just, they have a, you know, they have a thought in their head, like, I'm not supposed to let anybody in with, you know, electronic devices or something like that. And you

Ashlyn 16:45
honestly think it's the holster that makes them nervous,

Scott Benner 16:49
really, on your pump, which, which pump was it? So

Ashlyn 16:52
I had the type one tactical like, holster on my T slim when I had it, I have a Moby now, right? And sometimes they would look at that, because I sometimes they'll be like, oh, you know, like, let me like, when you go to the airport, and they're like, Oh, let me swab it, or whatever, that clicking sound of the holster. Like, I think sometimes that one looks kind of like a gun holster. So it depends on like, the individual person, because 95% of the time I don't need to contact anybody, I just walk through and they're like, go, go, go, right,

Scott Benner 17:21
you know, but sometimes you bump into somebody that's maybe a little more gruff about it and doesn't understand,

Ashlyn 17:27
right? And it's like, I kind of understand from their perspective too. Like you're dealing with so many people that are probably not in the greatest of headspace,

Scott Benner 17:37
yeah, so talk about that a little bit like even you, like you're pretty you're pretty you're pretty reasonable person, but you got into an argument pretty quickly over it. Are you high already when

Ashlyn 17:45
you get there? No. I mean, probably just weed.

Scott Benner 17:47
But I like how you don't, you don't count weed. You're like, no, just weed. That's awesome. Yeah, just just, but you are, like, you're a little altered, and now, I mean, did that help you get into an argument quicker? Do you

Ashlyn 17:58
think? No, no, no, I sober. He probably would have strung the lily

Scott Benner 18:03
up. Oh, you think the weeds, the only thing that saved her is what you're

Ashlyn 18:07
saying. I mean, pretty much I was like, Listen, you know, I'm not trying to be a problem. Let's not make this a problem. And I'm, I don't I listen. I do not have a temper at all. But with stuff like this, because my brain instantly goes to not me, but the newly diagnosed, like family that's going to go to some like baseball event, and then they have the same problem, and I'm like, they don't know how to advocate for themselves in the same way, because I'm an asshole.

Scott Benner 18:36
I watched Arden's bag get tossed in an emergency room the other day she needed IV antibiotics for something that's not really important right now. But like, you know, we came into the ER, her and I, and the guy pulled her aside, and she's like, look, there's, I have diabetes. There's juice boxes in there and, you know, insulin and stuff like that. And he like, took his stick out, and was like, sticking around in it and everything. And he's like, all right, and that was it. But, you know, using that as an example, even though you're at a hospital, he's not a doctor, he and he's the security guy at the door, you know. And you know you're going to, you know, I don't know you're going to a concert. And the person at the front, like they're not the floor manager, they're the person they hired to stand at the front. They gave him a short list of rules. They said, Don't let people in with this, this and this. This and this. And that's what, that's what the person's doing. They don't know, and they don't have what I would call, um, decision making power. Do you know what I mean?

Ashlyn 19:29
No, not at all. And that's what you have to understand. Like, even, you know, working from this side of things, all of those people are temps. Oh, yeah, right. It's,

Scott Benner 19:36
I got a list of 10 Things I wasn't allowed in here. This seems like it falls on my list. I'm gonna make 400 bucks tonight. I just want to get in. And out of here, want to get in and out of here and get this done. They're not looking to understand your insulin pump contour. Next.com/juicebox that's the link you'll use to find out more about the contour. Next Gen blood glucose meter. When you get there, there's a little bit at the top, you can click right on blood glucose. Monitoring. I'll do it with you. Go to meters, click on any of the meters. I'll click on the Next Gen, and you're going to get more information. It's easy to use and highly accurate. Smart light provides a simple understanding of your blood glucose levels, and of course, with Second Chance sampling technology, you can save money with fewer wasted test strips. As if all that wasn't enough, the contour next gen also has a compatible app for an easy way to share and see your blood glucose results. Contour, next.com/juicebox and if you scroll down at that link, you're going to see things like a Buy Now button. You could register your meter after you purchase it. Or what is this? Download a coupon. Oh, receive a free contour next gen blood glucose meter. Do tell contour next.com/juicebox head over there. Now get the same accurate and reliable meter that we use.

Ashlyn 20:56
No, no, no, we don't need to. It's just like, it's a medical device. Let's move on. And it really depends. I would say that happens at maybe one out of 30 times. I mean, I've had other times where it's like, they have a metal detector, and I'm always like, Hey, I can't go through the metal detector. And then they're like, oh, just come around. You know, most people are cool. Yeah, most people are cool. The only other thing that you can have to explain sometimes is I tend to bring so much food and that that's something like pre packaged food, like you can't have anything open. And so sometimes they'll be like, Why do you have this whole bag of quest chips with you or whatever? And I just have to be like, Oh, it's medical, you know.

Scott Benner 21:41
And if they give you a pushback on that, it's likely about money. They're trying to sell food is what they're getting.

Ashlyn 21:46
Oh, I'm not paying $20 for a quesadilla. Well,

Scott Benner 21:50
pre case. Oh, well. I mean, listen, when food is medicine, you need to have it with you. That's fair. Like, I mean, if you're in the middle of a concert full of people and you realize you're low, you can't make your way through the crowd. Stand in the line, you know, hope you have $20 it's a long way to go to save your life when your blood sugar is low, you know, it's not a And

Ashlyn 22:10
so no, but I will say, like any bigger event like there, there was a time where my fanny pack got, like, stolen from me, and they do have glucose tabs at the Medical like, tents at all of these events, they have glucose tabs. Yeah, that's nice. The worst comes to worst. I mean, I

Scott Benner 22:27
love that. I think that's great. I just think that again, if you're in the middle of a crowd and you're having an emergent situation, like, going to find the medical tents not exactly the way to go, like, I mean, it's your own, yeah, you want to have it with you, and so you have to be able to explain to that person coming in, this is not me trying to avoid spending money today on food. You have to think of this food as medication for me, because my blood

Ashlyn 22:48
sugar and I, I've gotten extremely petty with people. I remember one time I had a woman kind of just have the whole thing about the food, of like, you know, like, well, you can bring in food, but not this much food, because I bring in so much food, and I literally, like, lifted my skirt, showed her the infusion set. And I was like, Do you think this is a joke?

Scott Benner 23:10
It would be a long way to go to put an infusion set in yourself to get a bag of chips into a

Ashlyn 23:14
concert. Yeah? Usually they, they pipe down real quick, yeah. Well,

Scott Benner 23:19
it's just, you're just pointing out that, like, everybody can't know everything about everything,

Ashlyn 23:24
no, and like, if you don't have to know about diabetes, like, God bless you, live real life,

Scott Benner 23:28
good for you, right? So what happens is, when you're watching people online, you get like, a pang of, like, guilt that you feel like some people aren't going to notice the cup for themselves or not be able

Ashlyn 23:37
to. Well, I think a lot of it is just you're excited, you're going somewhere you really want to be, and then it's like, it's a, it's a temper. It's like, it's a, it's a, it's something you have to consider with type one, and it

Scott Benner 23:50
sucks. Yeah, do you prefer festivals where a bunch of bands come up? Or do you like going to concerts where you just hear a band or two? It

Ashlyn 23:57
depends on who's going to what. You know, like, if it's a bunch of people I like, then it the festivals are great. I will say concerts. Usually, if it's like one specific artist, the crowds are a little bit better. The festivals now it's just they can attract, like, the wrong types of people.

Scott Benner 24:15
What types of people? What are they doing? The people that shove you? Oh, people just pushing and shoving. And, yeah, people who are

Ashlyn 24:22
pushing shoving, they drink their little beatbox juice and they're gonna shove

Scott Benner 24:26
you, and they go crazy,

Ashlyn 24:29
yeah. And, you know, it didn't really, like bother me about the shoving until I got the insulin pump, and it's just something to consider. You know, when you're in a big crowd, I'm always like, honestly, half the time I try to get, like, a fanny pack that has, like, a little bit of a shell to it so it doesn't just, like squish, so if I get shoved or like something, my my insulin pump is a little bit more effective protection.

Scott Benner 24:50
Yeah. What's the best band you ever saw alive?

Ashlyn 24:53
The best band I've ever saw? Yeah, that

Scott Benner 24:55
really did the music justice live. That you were like, wow, this is awesome. That's

Ashlyn 24:59
a hard. Question, I've gone to a lot of red rock shows, and I do think that anyone who enjoys concerts go to Red Rock.

Scott Benner 25:09
It's a great like, it's a great venue. Yeah? The venue is great. Yeah, dead

Ashlyn 25:13
mouse does like a Halloween show every year. It's called a day, day of the dead mouse or something. That was an amazing show. How long

Scott Benner 25:20
does that go for?

Ashlyn 25:22
Maybe, like, four or five hours. Okay. And the great thing about Red Rocks is is they have like, accessibility shuttles and everything to the top. You don't have to do the whole stairs if you don't want to. And you get like, accessibility parking and stuff

Scott Benner 25:35
like that. Okay, I have to tell you, like, how old are you? I just turned

Ashlyn 25:39
27

Scott Benner 25:40
Okay, yeah, I just know that we're, like, significantly different aged, because I know Red Rock is, like, a really cool venue, and, like, I've seen, you know, I've seen enough video of it to know how interesting it is. And I just like to go somewhere for four or five hours to do anything with a bunch of people. I'm like, I wouldn't want to do that. And I don't know if that's personality or age, that's what I can't figure out. Because I love that. You love it. I think it's awesome for anybody that does. But like, it's not, it's so not my vibe that it's hard for me to, like, wrap my head around that you'd want to go to a music festival. I know that sounds crazy.

Ashlyn 26:14
I'm so zero or 100 that I do maybe one or two of these a year and half the time. The other half of my life is just I am

Scott Benner 26:22
so I gotcha. Okay, that's interesting. See, that's an interesting stretch for you. Then what do you think it is about that setting that allows you to break free of how you normally feel, to go do it like, what is it that draws you to

Ashlyn 26:34
it? I like, for me, I'm somebody who like, I'm very drained by socializing, very drained by people. So it has to be an experience that is adrenaline or, like, I, I'm somebody who's zero or 100 for most things in my life. So this is a 100 moment, and after that, I'm going to go home and not talk to somebody for like, a month. Or anyone.

Scott Benner 26:56
Are you getting, like, an an energy in and out thing? Like, is being around the people draining you, but the but the event is so high energy that it's you're not losing. Does that make sense? I just

Ashlyn 27:07
really love music. Like, even if I'm home, working, cleaning, doing anything, I have headphones on, I'm listening to music almost constantly. So just seeing music live is something I've always really enjoyed, even like when I was younger, and going to concerts with my parents and stuff like that. It just, I've always really liked it, and then I got into festivals and stuff like that, and now I go for work and stuff. And it just, it's been a part of my adult life. I think the first festival that I went to, it was like, the week after I turned 18. What kind

Scott Benner 27:40
of concerts did your parents take you to when you to when you're young? My

Ashlyn 27:44
first ever concert was Linkin Park in 2012

Scott Benner 27:50
are your parents the way I picture them? Does your dad have a small goatee and a motorcycle and your mom? Or do they not fit a mold?

Ashlyn 27:57
I don't think my family fits a mold.

Scott Benner 28:01
I mean, Lincoln Park said that's a hell of a first concert.

Ashlyn 28:04
Yeah, it was great. I loved it. And I'm honestly now, with everything that's transpired, I'm so glad I got to go before. You know, people

Scott Benner 28:13
pass away. Yeah, how? How old were you? Then you remember,

Ashlyn 28:19
what? 20? Maybe I it had to be anywhere between 12 to 14.

Scott Benner 28:24
Okay, all right, did their music taste shape yours? I

Ashlyn 28:29
think so. I my dad was really into Lincoln Park, and he's a big like rock, classic rock, like we did Linkin Park. And then that same year, we saw Blues Traveler at Red Rocks.

Scott Benner 28:40
So that sounds like a good concert, actually.

Ashlyn 28:43
Yeah, they do like a fourth of July thing, like almost every

Scott Benner 28:47
year. Okay, see that. I think that I might enjoy. No, it was

Ashlyn 28:51
nice. I mean, that was a little bit more laid back. It was during the day. I love day parties. I really wish that every party was a day party, because I hate being out late.

Scott Benner 29:01
You're like, I like all this excitement, but Why so late?

Ashlyn 29:05
For real, I my energy peaks at like, 2pm and then they're like, oh, this goes until 2am and I'm like,

Scott Benner 29:12
Ashland, like, I'd like to have this concert, have a nice meal around five, and I want to be in my jammies by 730

Ashlyn 29:18
Yeah, I see the like, the day raves for like, kids, and I'm like, I'll go,

Scott Benner 29:23
do you think you'll ever have kids? No, no, why

Ashlyn 29:27
not? I don't see that for me. Honestly, I don't I think that it, it just, it's never been something where I'm like, Yeah, I really want to do that. And I think that for that, I think you have to be one of those. I really want to do that kind of people.

Scott Benner 29:42
Oh no, for sure. But I was just wondering, like, you don't have any desire to take your like, eight year old to dead mouse one day or something like that.

Ashlyn 29:49
I actually have a half sister who is six so But nope,

Scott Benner 29:55
you'll just take it on her. I got you. Well, I will tell you that the best. Live performance of music that I've ever seen in my life, like meaning that I felt like I was listening to the record, even though they were playing it live. In front of me was Guns and Roses, like they did, like an exceptional concert when I was younger, I've seen Metallica do a good job of representing the music on stage, heart and black crows. I really remember going, well, Black Rose was really good. When I got a little, like, older, my wife liked different music, so we ended up at a lot of more, like festival seating stuff to see, like Sting and things like that. Like, more like ballet stuff. He was really good. I like, 100 years old now, I don't know if he can

Ashlyn 30:36
still do it or not. My parents would have loved to go to a sting concert. Yeah,

Scott Benner 30:40
no, it was really mellow and and just like, like, grass seeding and stuff. I know I said I don't like this stuff, and now I'm telling you all the concerts I've been to, but I think it's me as an older person. I'm like, Oh, I don't know. Could sting come to my house. Like, I guess that'd be okay. I don't want to go out anymore. It's been very interesting to grow up with musicians that were so super famous, that are still super famous, and it makes me wonder if more modern music will I don't think I'll live long enough to know like to stand the test of time. Do you know what I mean? Like, like, 85 year old may be like, Oh my God, this dochi is still on the radio. This is crazy.

Ashlyn 31:15
I thought about this, and I don't think that's going to be the case. I think that the internet in the pace that media moves now is so fast. I don't know if you saw but do she has already been, like, having issues like, I don't think, yeah, their video just came out this week of her like, screaming at like her assistant or something before some like event.

Scott Benner 31:39
No one needs to yell on their video cameras. It's not a good idea. Everybody. You don't think the Beatles yelled at somebody. Nobody was filming it. You understand? But I take your point like my kids listen to The Beatles still. Do you know what I mean? It's not because I pushed the Beatles on them. I didn't like my parents didn't like the Beatles. What do you think of that? Like I grew up, my parents thought the Beatles were too like crazy. So I find them in my 20s, my kids, you know, listen to it now. I got in the car the other day and I and Arden is bouncing around on the radio, and she puts Vienna on from Billy Joel, Yeah, but

Ashlyn 32:13
see, I have Vienna on a playlist. I think that because of the way the internet is and especially through like music streaming, like you can find whatever artist so quickly, and it's not like it used to be, like you

Scott Benner 32:26
can, yeah, there's too much, and it's, oh my god, ready, Ashley, this is great because I won't sound like an old man, because you're in your 20s. There's too much and it's too fast. You don't have time to marinate in it and really appreciate it, and you don't have to go to Tower Records on a Friday night and pick through 10,000 CDs to find one that you're gonna take home and try. And by the way, spend your only $20 that week on hoping you're gonna like this damn CD. Like, right? Like, because you don't get to try it first. You don't get to hear it on the internet. You heard one song on the radio, you think maybe the rest of this will be good now that you paid for it. You don't just listen to it once ago. You listen to it a number of times because you're like, Well, I like, let me make sure, you know and you know what I'm saying. Like, sometimes it takes a few times through a song before it really hits you. And you're like, This is awesome well, and I think that's

Ashlyn 33:15
also why we're not seeing, like, albums being released, that you can sit down and listen to the first song all the way through the last song, and it's like a continual album straight through. Feels like there's just now artists release a bunch of different singles, unless it's like something that's purposeful. But I was about to say, like you said the thing about the records, and my brain went to Limewire,

Scott Benner 33:38
yeah, right, because you were downloading music that way, yeah,

Ashlyn 33:42
yeah. And then you'd have to go and be like, Okay, I want this specific song. And it was very, like, purposeful, like, I use a software now, because I track what I listen to, and it tells me that, on average, I listen to 90 different artists a week or something. And I just don't think that people consumed media or music in that way previously. Yeah,

Scott Benner 34:04
no, yeah. You're not gonna get to that, right? Like, it's gonna be three or four. In the past, it was three or four things that you listen to. Also, sometimes you just put a CD in your CD player, and you didn't have the energy to take it back out again. So you're just like, All right, well, I guess I'll listen to this now. Or, I mean, like, if you were really fancy, you'd have, like, a five CD changer. Have you ever seen those? Yeah,

Ashlyn 34:23
where it would be like, push one and then the disc would like, move, yeah. You're like,

Scott Benner 34:27
Yeah. That sounds like it's out of a movie to you, but like, I had one of those. And so you'd throw five in, and you'd hit shuffle, and it would like, spin them around and, you know, pop them in and out and play different tracks.

Ashlyn 34:36
But I also think this is why we saw this resurgence of vinyls for a hot minute,

Scott Benner 34:42
yeah? But even that seems like it's gone now too. No, it is, you don't, yeah, you know, it's funny. I brought up doji because I, like, she found me through Tiktok. Like, that's, which is crazy. Like, there's one of her tracks is being used on Tiktok. I don't know how I landed on it, but, like, I'm like, oh, that's catchy. And then. And not five seconds later, my son said, Hey, there's this girl, docci, like, some of her rap is good. Like, check it out. But then he came, but this was six months ago, and then he came to me the other day and he said, Oh, my God, she's so captured by making Tiktok music now, like, she's already gotten away from the rap she was making that I found that I liked. So, like, this is not years. This story goes on. This is like, 18 months, two years. And she went from a more what he would consider, like hardcore rapper that he thought was good to, you know, I guess I'll just make tracks at work on Tiktok, because that's where the money is. Somebody gets a video of her, like you're saying, like yelling, and now, like, people will, like, walk away from her. It's that easy to walk away. I swear to you, if Paul McCartney walked out in the street tomorrow and started running people over this car, I'd be like, All right, yeah, but let it be, but I don't have that feeling if I see, if I see was that, oh, that was sexual. I was going to bring up the thing that was, that girl did, God, who am I thinking of? She made her backup dancers do weird stuff. Lizzo. Lizzo, right? That's a great example. Like, Lizzo is super famous. She's got this song, like, blah, blah, blah. Next thing I know, I'm hearing like, like, famous artists talk about Lizzo. Lizzo plays this thing. She's awesome, you don't know. And five seconds later, there's a story about her being weird with backup dancers. And now, boom, she's gone. It's like that fast. It's insane, how fast it happened.

Ashlyn 36:24
It's cancel culture. And part of it, I feel is justified. Part of it I feel is just out of control.

Scott Benner 36:32
Listen, I don't think you should be letting people like act like lunatics. I'm not saying that for certain, but at the same time, like, there's stuff you find out about that you never would have found out about prior, and you would have kept listening to the music and you didn't know. I mean, like, look at like the allegations about Michael Jackson, right? They're insane. No one who grew up with Michael Jackson music is gonna stop listening to Michael Jackson like they're just not that music is burned in you. But I feel

Ashlyn 36:57
like you have to be a certain caliber of artists to have your fans separate the music from you. Like, if your music is that iconic to where it takes on, it's a life of its own right. So be it. But for people who are tick tock rappers and stuff like that, it's just they don't have that star presence, that iconic. You know, where the music stands alone? Yeah,

Scott Benner 37:21
I'm gonna go out on a limb here, like, I'm not excusing anything, but a great example of that, I think, is Kanye West, because, because he has talked to me about, Yeah, but what I mean, just a fall apart breakdown of monumental, like proportions, right? Like, and I think it feels pretty clear that he has, like, some pretty significant mental issues. He's got all the problems he has the world, but some of those songs are awesome and like and like, so now that's the that becomes the new test, like you get in your car. Do you say to yourself, I don't want to be in any way attached to this, this guy and his weird thoughts, or do I say to myself, I do love this song, and I'm gonna put it on like he's really testing that theory. Do you see what I'm saying? Because, by all rights, everyone should just be like, I'm not listening to that. Like, you know, like he's gone too far for me. I don't want to be involved. But will that happen? Is my question, like, is he the Michael Jackson of my time? I think that

Ashlyn 38:26
Kanye is like a really diversive figure, and a lot of people who enjoy him and like, don't come for me, people, the people that like, Yay, are already people who enjoy holding controversial views, and they kind of, from where I stand, they kind of enjoy being a little edgy and cringe like that, like he literally just released a song called Heil Hitler.

Scott Benner 38:50
That's my point. If you're saying you think maybe people want to be attached to controversy, that's that's a different thought than is my head. My head is I hear that and I go, Okay, well, I'm done. I don't I don't need to be involved anymore. Except these six songs are really awesome. Like, so, like, what, like, what does that person do who feels that way?

Ashlyn 39:09
I don't want to dox where I work, but we have, like, we've tried to do, like, work with yay. And it became, like, this big problem. And a lot of the people who like him, I think it's just some people have that cult of personality, and ye is one of those people. And I think that even if he came to your house and lit it on fire, people would be like, yay.

Scott Benner 39:34
That's what he does. It's awesome. I mean, listen, how strange is it that he had that girl walking around naked

Ashlyn 39:40
for a year, oh, Bianca, since sorry or what? I

Scott Benner 39:44
don't even know her name, like, I couldn't be all I know is he's, I don't know if they were married. I don't know if they were just they, I don't know we were married. Okay, I ain't paying attention that close. What I'm saying is he's got that girl naked. And I'm sure some people be like, well, it was her decision. Like, I don't know if it was or it wasn't. I feel like, now. That she's not with him anymore. I don't think I'm gonna see her walking around in a see through dress anymore, but he still doesn't take the hit over that that I imagine that society would give him.

Ashlyn 40:10
There's another name that we could bring up in this conversation, but I won't

Scott Benner 40:14
really. Why not? I mean,

Ashlyn 40:17
look at Trump. It's the same cult of personality. Okay, I see what

Scott Benner 40:23
you're saying. Like, you don't want to be political. Like, right? But, like, yeah, I will tell you that I sat yesterday with a friend, and the two of us have fairly different political views, and they asked me about that, and all I said was funny, because what I said I think fits with I'll just talk about it. Like, specifically, the Kanye is an example. I'm all for people like stretching boundaries and personal freedom and saying, and, you know, saying what you want. I really am 1,000,000% for that. But there is, like, a part of me inside that, like, sometimes when the boundary gets stretched in a certain way. I think, I don't think that's good for society. I want people to speak their mind, and I want people and I think there's freedom of speech, and I don't think it should be restricted. Like I am really, like, an absolutist on, like, freedom of speech. I just think, like, some people are gonna say, crazy, it's their right, you know, people should fight back by saying, you know, opposite stuff, or calling them out on their bull like, that kind of stuff. But every once in a while I don't understand that people don't say, like, Oh, that is going to take us somewhere that's not good. And I know, like, who am I to say? Like, I'm not obviously, I'm not trying to control people, but that's my personal feeling. Like, Jesus is this taking us somewhere that we can't come back from, that's not going to be a negative for humanity. Like, that's the thing I

Ashlyn 41:47
wonder. I mean, that would require people to do things while thinking critically.

Scott Benner 41:52
Yeah, I don't know. Like, that's the kind of stuff that occurs to me all the time. I think

Ashlyn 41:55
that this is more a conversation about people glorifying people who have, like, dark I don't know if you know what dark triad traits are, like narcissism, Machiavellianism, as a society, we kind of glorify those things. And I think that this is just a symptom of that issue. We glorify people who are dog eat dog. We glorify people who, you know, profit at any expense, and we don't prioritize people who value community, and like you said, things that will benefit society long term.

Scott Benner 42:29
Am I hearing you tell me that there are some people who put on a Kanye song and just go, This beat is crazy. I love this beat. This is musical to me. I like it. And there are some people listening to the words going, Yeah, that's right. Like, let's get those people or do this thing, or whatever, like, so maybe people are listening to music in two different ways. Oh, 100%

Ashlyn 42:51
I mean, people are listening to music in a million different ways. Some people are lyrical. Some people it's the beat. I mean, some people it's both. And I do think that there are, as far as probably yay fans, people who have been listening to him for years and years and years, and they're like, oh my god, like, he's just a genius in the way that he structures lyrics and the way that he structures his beats. And then there are, are the people who are like, I want to listen to this person because they're being divisive and hateful.

Scott Benner 43:20
No, yeah, no, I it's funny. I never think. I don't think of things that way. So it doesn't occur to me like that. So that's a really interesting perspective. I don't even know the words to some of my favorite songs. I've tried to explain this, my family laughs at me. And it turns out this is a thing that actually happens to people. I don't hear the words like words. I hear the words like music. I don't know if that makes sense. So, like, I can,

Ashlyn 43:42
I think I listen to music similarly, I take, I view it as, like, the whole picture. You know what I'm saying? Like, I view it holistically. Like, what is the entire song? And a lot of people, especially people who enjoy, like, rap or something like that, they're like, Oh, these specific bars, or I really like this beat, and I don't pick it apart. I either like the whole thing or I'm not

Scott Benner 44:04
listening right? So to go back to the doji thing, there's one of her songs that I think is really great. And I played it the other day in my car, and Arden was with me, and she goes, Are you listening to what she's saying? And I was like, no. She goes, maybe you should try listening to what she's saying. And I was like, oh, okay, there was some fairly, like, vivid imagery in that song I was completely unaware of, because I just like the way it bounced,

Ashlyn 44:28
if that makes sense, I think I might know the song you're talking

Scott Benner 44:31
about, Nissan, Altima, yeah, and I swear to you, like I didn't know one thing she was saying in that song, but I thought it was good, You know, if I listen to let it be, what I hear is a lot of things happen in the world. You can't change everything. Some things you have to just leave alone, let them play out. Like, that's how let it be seems to me, and I don't even know if that's what McCartney meant when he wrote it, but like, that's how it makes me feel. It makes me feel like the. World is what it is, and people are generally good, and you don't need to pick through everything sometimes, just let it be.

Ashlyn 45:08
But this is why there's music for different moods. Like the Beatles are a little bit more contemplative, a little bit more, you know, laid back. You're not going to play doji in the same

Scott Benner 45:18
game space.

Ashlyn 45:19
Yeah, yeah. So I kind of view music as a way to bolster different emotions, and I think that she does a good job at that, actually.

Scott Benner 45:28
So then, does the kind of festival or kind of concert you're at dictate how you have to manage your diabetes?

Ashlyn 45:35
Oh, yeah. I mean, because I'm not dancing as hard if I don't want to, like, for example, I go, there's like, a bigger rap, hip hop festival that I go to every year for for work. And I'm not the biggest rap or hip hop person. Doji didn't go. So I'm not dancing as much. Rap is not as danceable to me, and I'm mainly trying to avoid mosh pits or getting punched in

Scott Benner 46:00
the face, yeah, so, so I'm assuming, right, there's like, physical activity at some of these there's less physical activity. Others, there's adrenaline, probably from your excitement, from finding a band that you like. And there's also can be adrenaline from you being like, please don't shove me over. Do you see yourself changing your management at these things, or do you just use a regular day management.

Ashlyn 46:21
So I have experimented a lot, and I much as I love tandem exercise mode, I've never once been able to use that successfully for anything, any kind of exercise. It drives me nuts. I don't really mess with my basal as far as like the day before, and if I was, if I was MDI, I probably would my strategy and like, everyone's mileage may vary. I like, gorge myself like a snake every event. I try to limit like IO B so the last one I went to by myself. I went to, like, I don't know if you know about, like, the smart buns. They're like, these almond flour like burger buns. And I love them. I buy them so much. And I went to McDonald's and I bought like, two Big Macs. And I think I just I sat there and I ate like, two Big Macs, like the almond flour bun right before I went because the fats and proteins are really going to be crucial,

Scott Benner 47:24
and they hold you up during the event. Oh,

Ashlyn 47:27
yeah, two Big Macs is, like, what, like, 500 calories of fats and proteins, and you're not gonna, you know, dip as easily from movement or dance, right? Yeah,

Scott Benner 47:37
that's smart. Like, so, yeah. So you figured out a way to go to those thick I just interviewed a football player, and he explained to me how he eats before he plays in a professional football game. You're basically doing the same thing. Oh,

Ashlyn 47:47
yeah, you want for me, fats and proteins make my blood sugar more stubborn, right? I'm not gonna have a sudden drop. And even if I do, I have, you know, I carry like, at least, like, 10 rolls of Smarties, like, tucked into every nook and Penny of you know what I'm packing, or I usually bring, like, a full sugar Gatorade and just sip that throughout the night. So you're

Scott Benner 48:13
not driving your blood sugar high. You're just putting your body in a situation where it's processing food that takes longer to process and holds your blood sugar up more stably.

Ashlyn 48:21
No, I went to EDC Orlando last year, and my blood sugar was between like 130 and 119 the whole time. Yeah,

Scott Benner 48:28
that's awesome. Yeah. No. How long did it take you to figure that out? Do you think

Ashlyn 48:32
I don't think I really sat down and figured it out until 2022 I went to a music festival in Miami called three points, and I went by myself, and I was really nervous to go by myself, because diabetes just logistically, yeah, diabetes logistically, getting in and out of Wynwood by yourself is a nightmare.

Scott Benner 48:55
Am I hearing you right or wrong? Tell me going by yourself. Is that part of being a girl. No, no, because I hear my daughter talk about that sometimes, again, I never know exactly like, like, there are some places like you kind of don't want to go by yourself. Sometimes, oh

Ashlyn 49:10
yes, yes. I thought you meant like, so you meant something else.

Scott Benner 49:14
No, not like, Lady time. I meant like, like, physically being a female by yourself somewhere.

Ashlyn 49:18
Oh yeah. I mean that time I went to three points, I had somebody follow me out of the event, and then I had to be like, No, leave me alone. I'm getting an Uber, you know. Like, I've even in clubs, like, I've seen girls get uncomfortable, and I'll be like, Hey, girl. Like, are you you good? Like, you know, try to be like, you're not alone here. Yeah,

Scott Benner 49:39
we can hang out a little bit and again, give you some more numbers, right?

Ashlyn 49:42
Yeah, yeah. I mean, and that's, that's a big thing in a festival culture, too. I Everyone is so nice, like, I've gone up to random people. I didn't just talk to them. And usually, by the end of it, I'm not alone.

Scott Benner 49:55
You bring your own drugs to festivals, or do you get stuff there?

Ashlyn 49:59
Oh, I get. I get the festival provided drug? Yes,

Scott Benner 50:03
no, you know. I mean, do buy that there? Like, because I hear people talking about testing all the

Ashlyn 50:07
time, do not buy your your drugs there. Do not,

Scott Benner 50:10
yeah, come, come prepared,

Ashlyn 50:12
yeah. I mean, they're not gonna be like, there's no free love in that arena. Like, I wouldn't trust anybody, as far as you can throw them.

Scott Benner 50:22
Are there testing stations at all the concerts you go to for your for drugs? I've heard people talk about that too.

Ashlyn 50:27
So there are, and I did talk about this on the previous episode. I remember right there's an organization called Dance safe that does test drugs and stuff like that. I haven't seen them at the last few I've been to, I don't really know,

Scott Benner 50:43
interesting. Maybe the drug problem is fixed.

Ashlyn 50:46
I wish there are test kits you can just order right off of Amazon. I think they're like, anywhere between 12 to $15 which to me, is a very low price to pay,

Scott Benner 50:55
yeah, for not dying of a fentanyl overdose. So you said earlier that you've changed with your diabetes, and it sounds like even with your usage, like, everything's changed for you. Like, how has your diabetes management changed over the last couple of years, since I spoke to you last, when I talked to

Ashlyn 51:13
you last, I was a little bit in a mental breakdown over it. I I have, I've had type one since, like, 2006 2007 somewhere in there. But I didn't really have any like moments that put the fear of God into me until around that time, and I think that it just took me so long to, like, figure everything out, because when I was not really paying attention, I didn't realize how much they had just, like, yanked up my basal to compensate for, like, lack of Bolus insulin, and then just trying to figure all that out on my own. Okay? Was just really demanding emotionally, and it kind of caused me to snap,

Scott Benner 51:51
okay, how did you eventually work through it all? Like, did you where'd you get your information, and what were the reasons you found that you needed to focus on it and get it worked

Ashlyn 52:00
out I couldn't live my life. I mean, I had a moment where I blacked out while driving from a low and the diabetes was coming first, because it was just, if you don't have your basal insulin set right, you can't really

Scott Benner 52:12
live, yeah, I know. And so

Ashlyn 52:14
then going to the flexibility of the pump, where, you know, I wasn't tied to, like, a wrong basal rate for a whole day really gave me a lot of wiggle room to trial and error things. And I'm still trialing and erroring things today. I just got the Moby, like, a month ago, two months ago, and I've had to, like, reprogram my basal rates even for

Scott Benner 52:34
that. Yeah, no, I imagine. And you were coming from which pump prior. I'm sorry. I've only been with tandem. So you were T slim, and even going from T slim to Moby, you had to change your settings. Yeah,

Ashlyn 52:45
my endo warned me that some people were a little bit more sensitive. And I've kind of noticed the opposite. I kind of bumped my basal by 15% and it's been good

Scott Benner 52:54
so far. Okay, awesome. Do you like the algorithm generally, though, how it works is that the new one, the plus,

Ashlyn 52:59
oh, yeah, the control IQ update. Yeah, you did. I love it. I love the update. I didn't think it would change much, but the fact that you can actually set a temp basal with control IQ on is amazing.

Scott Benner 53:13
I think so too. Yeah, I think everyone should let that happen in their algorithm. Actually, I think that's a great idea.

Ashlyn 53:19
Well, I was like the queen of being a little bit too stoned, turning off control like you, and falling asleep and then waking up with like, an urgent load or something, and then just being like, Ah, I didn't turn that back on. So for people like me, the 15 minute timer is, like, amazing.

Scott Benner 53:34
Why did stone dash one turn off her algorithm? Sometimes

Ashlyn 53:38
I don't like, I really wish that tandem would allow you to have a lower, like, target blood sugar, because it'll start suspending my insulin after I dose. Or, like, let's say I eat something, I dose, and then it's like, oh, you're at 110 let's suspend and then that will cause, you know, a high for no reason, because it's like, No, you didn't need to suspend my basal. So you're just

Scott Benner 54:01
trying to get ahead of mistakes you think it's gonna make?

Ashlyn 54:04
Yeah, I I'm really sensitive. I don't use a ton of insulin a day, so I think sometimes it'll it'll want to push my blood sugar up to hit that 120 and I'm like, no, no, I want to stay at 110

Scott Benner 54:17
Okay, yeah, I hear you. Anything they can do to give you, if you want it, some control and allow you to continue to use the algorithm, I think is a good idea. I think people like will grow to know if they don't already know. In this scenario, I need more aggressive or less aggressive, like, you know, and there's no way the algorithm is going to know that it's a great feature. So again, I think everybody should put it into theirs well,

Ashlyn 54:42
and the algorithm isn't going to know that, you know, oh, I've been walking around. I just ate, and now I'm going to go lay down, and I'm not going to need that bent, that basal suspension, like I'm

Scott Benner 54:51
Yeah, or this 40 carbs is Captain Crunch, not regular food, like that kind of an idea. It's not always going to be one to one with your setting. Yes. So, all right, that's awesome. I'm glad you're enjoying it. What else have we not hit that we should have? No,

Ashlyn 55:05
I absolutely love the Moby. Love tandem, like I can't, like they've given me my life back, really?

Scott Benner 55:13
Can I say tandem diabetes.com/juicebox? Support the podcast. Use the link. Thanks. Sorry, just, yeah, just slip that in your job a little easier. Thank you. Yeah, let me just slip that in really quickly. What about like for everything you've shared about concerts and festivals? Like, do you feel like you got through

Ashlyn 55:30
everything? Basically, it all boils down to advocate for yourself. Advocate for yourself in every way possible when it comes to music festivals and stuff like that. The people around you usually are there to help. Like, I have had moments where I've had a low or, like, some random person helps me. The environment there is really welcoming, for the most part, depending on where you are, everyone's there to have fun, you know, except the show people, yeah, except the shovel and they can shove.

Scott Benner 56:02
Have you ever been concerned about somebody like dosing you or giving you something without you knowing?

Ashlyn 56:07
I mean that for the average person, should not be a concern. It has happened to me. It

Scott Benner 56:11
happened to you specifically. I'm sorry to ask, like, what was the scenario? I

Ashlyn 56:18
drank something that I didn't realize had LSD in it. And luckily, it was only a little bit, but that's never a good time. And

Scott Benner 56:25
it wasn't somebody trying to get control of you for like, sexual reasons.

Ashlyn 56:29
No, no, I was at a party, and then it was just kind of like, Oh, that was my drink, and I thought it was your drink. And,

Scott Benner 56:36
you know, yeah, I got you. He picked up the wrong cup. Yeah.

Ashlyn 56:41
Yeah. It was just, it wasn't one. This shouldn't happen to anybody in a normal circumstance. It was my fault. Yeah,

Scott Benner 56:47
I hear you. Okay. I was more worried about, like, you know, have creepy guys try to give you something that doesn't happen. I don't, I don't

Ashlyn 56:53
drink alcohol, like, at all. Okay, so most of the time, if I'm at a party and drinking something, I bring my own diet soda that it comes in a can with my little koozie. I know it's my drink. I'm very weird about that.

Scott Benner 57:06
Yeah, do you ever meet somebody at those events that become friends? Oh,

Ashlyn 57:10
a lot. I have. I I've met, you know, tons of people that I still talk to today. I mean, I have friends all over the world, just because so many people come to these events and you can talk, and it's made like lifelong great friendships. I really think that you can go and talk to anybody for the most part, and yeah, have a friend

Scott Benner 57:30
that's awesome. That really is awesome. Are you, do you date? Or are you, do you find yourself single and go into these things by yourself?

Ashlyn 57:37
I find myself going by myself. I mean, even through work, I get like, a spare ticket, but half the time they like, tell me the day before. So then it's like, nobody has time to go with me. And then I just, I'm like, I just, I'm not gonna look back on this and be like, Oh, I didn't go because I didn't have anyone to go with. I'm not gonna wait for anyone. And that has led to me going to a lot of these things with type one by myself, which was really scary at

Scott Benner 58:02
first. Why do you think you're able to do that? If you talked about yourself as, like, introverted, generally speaking, like, Why do you think you're able to make the leap for these

Ashlyn 58:09
events? My fear of missing out is bigger than my social anxiety.

Scott Benner 58:15
All right? That's awesome. That really is cool. Oh, I love that. Tell me just you know, this is weird. I'm doing this in reverse, but because we didn't, because I've spoken to you before, I try to skip over some things. But how old were you when you're diagnosed nine, nine and you're 27 now? You said, Yep, yeah, okay, any epiphanies? After almost 20 years,

Ashlyn 58:37
I wouldn't say epiphanies. I'm not that kind of person. For me, I've always just made diabetes decisions on a gut level, and I don't overthink it

Scott Benner 58:46
okay, but you have made adjustments and figured out that there are some things you need to know. Where did those things come from?

Ashlyn 58:53
So I feel like I probably in, like the I'm in the the camp of, I want to think about diabetes the least amount of time possible throughout my life. And I know everybody's in that camp, but I'm pretty low carb. I try to just not I really want diabetes to be the back burner of my life, and eating low carb just allows me to set it and forget it in a way, okay? And that's obviously not for everybody. It's just the way that I want to live my life.

Scott Benner 59:22
I gotcha. So you made an adjustment to how you eat. You paid closer attention to your settings, because you were being over basal in the past to make up for bolusing. So you're also paying attention to actually bolusing at this point too,

Ashlyn 59:35
right? I mean, when I first got a pump, my my basal rate was like 28 units a day, and through trial and error, it's really only about 15,

Scott Benner 59:44
okay, and that was because you weren't bolusing for meals correctly. Yeah,

Ashlyn 59:49
my carb ratio was, like, completely wrong, like they were telling me that it was like one to 20. And in reality, through trial and error, again, it's like, actually one to like, eight.

Scott Benner 59:59
Oh, my. On, yeah, how much did your parents help you growing up with your diabetes, don't

Ashlyn 1:00:05
I not sending my mom this link? This is something where, like the podcast, actually made me really emotional. Okay, because when I first joined that Facebook group and everything, I felt really overwhelmed. I didn't. My parents always viewed diabetes as this, like, unattainable goal, and so it really took for me to, like, grow up and kind of be on my own for a while, to realize, no having an A, 1c, in the fives is actually something that's possible. Like, my parents really just were like, who cares? You've got insulin. You know, even now, talking to my my family, I I was visiting my dad, and he was like, Oh, I bought, you know, this fruit, you know, you can eat this fruit. And I was like, oh, you know, I don't want to have a banana. I, you know, I eat low carb. And he was like,

Scott Benner 1:00:49
well, it's fruit. Oh, yeah. He doesn't understand, yeah.

Ashlyn 1:00:53
And so, you know, me and my sister are both type one, and I love my parents. They're not the kind of intellectual people to sit down and say, This is a math problem that we can solve. They just kind of threw up their hands, and they were like, we're at capacity as people are ready. You are alive, and we love that. That's great, and that's all we can give you

Scott Benner 1:01:14
know, I'm not figuring anything out past what was said to me.

Ashlyn 1:01:17
Yeah, they never looked past like the advice that was given, and then it was like, I had to spend so much time on fucking myself, because my parents didn't really advocate for me, didn't really care. And, I mean, even now, my sister, she's also type one. Her a one season, the nines 10s, you know. And then my family, they kind of paint me out to be this, like, type a person that's very, you know, oh, Ashlyn in the food, you know, because I don't eat cart

Scott Benner 1:01:47
so you pay attention a little bit to your health. And they're like, Oh, look at this one. Trying so hard.

Ashlyn 1:01:52
Yeah, this is inconvenient. Oh,

Scott Benner 1:01:55
yeah. Oh No, kidding. All right, I'm figuring out what you're saying. That's a shame. I'm sorry. Like, did you say, like, don't let me put words in your mouth. But did you say the podcast helped you with that?

Ashlyn 1:02:04
Well, it made me feel really emotional. Because, you know, every day, there's so many posts from parents that are like, asking the questions that I wouldn't have even thought to ask until relatively recently, and it's just the relationship that I had with type one was so it felt like I was, it was like, learned

Scott Benner 1:02:23
helplessness, yeah, and so emotional. Like, wow, this is great. I didn't know this existed. I'm gonna help myself. Or, Wow, how come my parents didn't do this for me? Or a little of both.

Ashlyn 1:02:39
I think both come in waves, like I do kind of feel jealous, because it's like my relationship with myself, my relationship with food, my relationship with diabetes itself. I had to really carve that out as an adult, and it really broke me to the point where I I've never felt like that before, and so to realize that some people's parents literally care to the point of this level, to where they're sending their kids off to college, and they're still monitoring their Dexcom, and they're still and it's a double edged sword, because sometimes I do see people on there and I'm like, Whoa, you got to chill out. Your kid is not going to live in a bubble.

Scott Benner 1:03:18
I feel you and like some people go too far, but at least they're well intended Exactly.

Ashlyn 1:03:24
And it's like that's a kind of love for your kid that I just I don't think I experienced that even secondhand, until recently, Ashley, you

Scott Benner 1:03:35
almost made me cry. I'm sorry. No, it took me by surprise. I think because of your just kind of, like, laid back hippie nature, you know what I mean? Like, I didn't expect you to like, I don't know why I didn't expect that, but I'm sorry that that happened to you, and I'm

Ashlyn 1:03:50
sure, no, I just I didn't know. Like, you don't know there's another way, until you see it for

Scott Benner 1:03:55
yourself. Yeah, no. And people don't

Ashlyn 1:03:59
realize, especially, I think, for teens, how much like, the ups and downs of blood sugars, cause, like, emotional, like, I feel so much more stable as a human being mentally, and there's no price

Scott Benner 1:04:11
on that. Yeah, no, I agree. And you do, you try to get through to your sister and it doesn't work, or is it not a thing? You approach her about

Ashlyn 1:04:17
my sister is a very interesting human being, and she's going to be the way that she is until she dies. I love her. I sit down with her, and I always tell her, if you ever want to, you know, sit down and talk about this. I'd love to, but she's just not at a point where she's willing to do that. And I honestly think it might be too late for her, and I'm not saying that in like, a morbid way, but she already has, like, gastroparesis. She's at the point now with like, she has like mobility issues in her fingers and hands, like she can't close her fist completely from like nerve damage. How old is she? She's 21

Scott Benner 1:04:53
oh my gosh. And you feel like it's just bad direction. And then a little bit of that. Like vibe from your parents that she has that, that like, I got the sugars, and this is what happens, and there's nothing I can do about it.

Ashlyn 1:05:06
Oh no, she she cannot take accountability for her life in any capacity. And it's not just the diabetes, it's it's more than you would ever believe. But you know, it's just that I refuse to go through life feeling like the things that happen to me are outside of my control. And I think that's really the difference.

Scott Benner 1:05:24
Has your sister done psychedelics or no? Yes, she has. So she didn't get the same come to Jesus stuff that you got?

Ashlyn 1:05:30
No. But we're really, like, fundamentally different people. And I think even for her, like, there's a different motivation for taking these kinds of things, and there's not as much introspection, or even want to have introspection, you have to want, or at least like, be able to think critically and like my sister, she's not somebody who's well educated. I love her to pieces, but she dropped out in the ninth grade. She does not have a GED. She is just raw, dogging life in a way that I could never

Scott Benner 1:06:03
I see. I was gonna, actually, it's funny, that's what you said next, because I was gonna say, does she have a gap somewhere that she can't kind of do all this? And you think that might be it.

Ashlyn 1:06:12
No, she's just not somebody who this is what's valuable to her. Because if it's valuable to her, she'll chase she'll do what she needs to do. But I think in a lot of ways, this is a form of self harm.

Scott Benner 1:06:24
Oh, I see you think she's punishing herself. She

Ashlyn 1:06:27
has a lot going on, like as a person, and I think that she's not somebody who has a good relationship with themselves, and that doesn't mean that can't change, but I think that with the path that she's gone down as a person like she's got a lot going on, and I just think that this is her journey. I'm

Scott Benner 1:06:49
going to say something I have no basis for at all. Do you take after your dad and she takes after your mom?

Ashlyn 1:06:55
Yes. Oh, okay, that's all. Why? What made you go to that conclusion? Oh,

Scott Benner 1:07:00
Ashlyn, are you gonna make me say how my brain works out loud? I don't know if that's important, is it? I don't want to get in trouble. Okay, fair Fair enough. Oh, I don't even know, Ashland, you come off more like a guy that's fair, like a little laid back, like it's gonna work out, man, don't worry about it. Like, that kind of a thing. And then when you started talking about the punishing herself, and she's the way she is, and she's not going to change, like that doesn't seem particularly female to me, but it does seem like I've known a number of people like that, and so far, they've all been ladies. And I also thought that if you're if you went one way and she went another way that you guys must be taking after a parent like one of the other. And I'm trying to imagine what relationship rifts could have happened between your sister and your mom for her to treat herself that way, and I didn't

Ashlyn 1:07:55
feel they have a very like codependent relationship, and it's something that is impacting the whole family. Part of the reason I live so far away is just to kind of have some breathing room with this kind of stuff. I mean,

Scott Benner 1:08:07
yeah, also, your dad tried to help you eat, and even though he was, like, ill, like, his intentions were good with the banana, right? But like, even though he didn't understand it, I have your parents in my head as your dad being the guy who likes Lincoln Park and hanging out and being cool, and he wants to help, but he doesn't know a lot, and he's doing his best, and maybe your mom is a little overbearing and half a teaspoon of crazy. Maybe

Ashlyn 1:08:32
that's a pretty good assumption. It's pretty good. 75% there. They're both crazy. I'm not gonna say better than the other. They're just people, yeah, but no, I had a very divided family growing up, and I think I'm just glad that I am somebody who can function and live and appreciate the days.

Scott Benner 1:08:56
Isn't it crazy that that's the level of success that you got put in, like, you got put into a situation that that description is a level of success to you. I'm grateful to be a person that can function. That really is telling, like, I don't know what we're supposed to do as a society to help people who aren't equipped well to be good parents. But, man, I wish we could try something, because, you know, I just listened to my own podcast this morning. Kind of don't like the way the ads are landing, and I'm listening to it a lot to figure out where I want to put them differently so that they don't break up your listening experience. Like this is literally what I'm trying to do. I was listening to one called, What the hell is it? Called the mom was awesome. Hold on hold on hold on a second. Because, like, people will try to go back, and then they won't be able to find it.

Ashlyn 1:09:45
Yeah, just to, just to give a little bit more context, you do that, I love my sister, but she is currently, like, facing, like, possibly 10 years in federal prison as a type one.

Scott Benner 1:09:56
She's at 21 who'd she shoot? To sell. What she sell? She sold something

Ashlyn 1:10:03
I don't really know. And honestly, I've told her, tell me the least amount of shit possible. Leave me out of this. Well, yeah, leave me out of this. Don't, don't bring up my name.

Scott Benner 1:10:15
Oh, well, she's Listen, I've interviewed people in prison, like, actually, I just interviewed a guy last week who was a little out of control and prison pulled him together. Like, believe it or not, like, and I've also interviewed people who told stories of, like, other people dying in prison because of, like, their problems and having type one diabetes and not being able to get care. Like, it is not a safe place to be, generally speaking, if you don't know how to manage your type one and don't get put into a place that understands and is willing to help you,

Ashlyn 1:10:44
no, and you know, for me, I've done some digging into resources and stuff like that for people who are incarcerated with type one, just out of fear for her. And it kind of seems like it really depends on the individual facility you end up in, and that's kind of the luck of the

Scott Benner 1:11:00
draw. Yeah, no kidding, that's been my finding talking to people as well. It's hard for me to get people on to talk about being in prison. I've had people set up like I get a couple that come in and talk about it, but I've had far more that have set their recordings up and then not done it for a number of reasons. Some of them are for parole reasons. They don't want to admit anything out loud because they're still on parole, so it's hard to get people to share those stories anyway. I'm sorry. Episode 1521 is called fueled by anxiety. That's an hour of just listening to a lady who wants to be a mom, and the it occurs to me, like you could have got her and you didn't, you know what I mean. And I wonder like and I not just not to use specifically, but for everybody, you don't even have to be the greatest mom or dad in the world, right to like really impact your kids. Well, it's not that hard to support people, I don't think, but you really do need to want to do it, or know that it needs to be done. And I think a lot of people don't have that knowledge when they make a baby, and I know it just made me sad, like you made me sad twice. I know you don't mean to like, but just what you said, just now, like that, this is like success to you. Like this should be expected. You shouldn't have to like, aspire to what you just said. It should just be a thing that's, you know, comes at birth, I think, but I know that's not the case.

Ashlyn 1:12:17
No, it really isn't. And half of that is my upbringing, and half of that is looking around at the state of the world, just the fact that, you know, I can support myself think critically, and even the stuff with education being defunded and stuff like that, makes me feel this way. So I'll

Scott Benner 1:12:34
say this Ashton, because I've been alive a lot longer than you have. I know things seem dire sometimes, and trust me, they seem dire to people in every presidency you know doesn't matter, like what side's holding office and stuff like that. There are things that are happening that seem dire. I told you I talked to a friend of mine yesterday at lunch, if we were playing tennis, everything that she said was completely reasonable, and everything I said was completely reasonable, and what we both found ourselves saying is that we wish there was some entity in the middle that people could exist in, so that they didn't have to attach themselves to a side that, you know, goes crazy and, like, in a direction, because it happens on both sides, right?

Ashlyn 1:13:12
Yeah. But I think that the real problem is like media sense, or what is it called, like, centralizing the media, or, like, sensationalism. There we go.

Scott Benner 1:13:24
Yeah. You know what I ended up telling her at the end was that when I was growing up, they they, like, the people in charge, would use abortion as a thing that kept everybody focused right? Like, so, like, don't look at where we're spending the money. Don't look at what we're doing. Go argue with each other about abortion, like that. That's what kind of got I felt like was being pumped into us, like, like, it's not a thing that's trivial. And there are clear opinions on both sides. They both make good arguments. And we'll go send society out to argue with themselves about that, right? That'll keep them off of paying attention to what a missile costs or etc. By the way, I also want missiles, but I'm just saying like, you know, like, that kind of an idea.

Ashlyn 1:14:08
It's the same song and dance. It's just like, different words instead of abortion. It's trans, trans people, and it's distracting us from the 1% versus the 99

Scott Benner 1:14:19
it's another distraction method. Like, you're, you're 100% right? It's either like, like you said, they just pick something. You pick something that both people have good points about, and that makes people upset, and then you just send them off into arguing about it. And then, you know, as the election comes up, you go to your your base, and you say, don't forget, this is what we think. And they're trying to ruin it, and then they do it to you, and they do it through the other side, and you all go, and then everybody votes, that's what this is. And in the end, I don't know that anything oddly different happens from one to the next. It's funny, because during that conversation, this person said to me, there were a lot of illegal aliens that came. Him into the country under Joe Biden, which I believe is true, like I'm not, I'm not arguing with her. And she went on to make the point that, you know, it was her idea, that she thought that if Democrats let in a bunch of illegal aliens, that they would become, eventually, Democratic supporters. And it was funny, because I was watching her make this argument. And I thought I buy into this, but does she know that I heard about this when I was little, when Ronald Reagan did it. I don't

Ashlyn 1:15:27
understand this argument as somebody who, again, like I grew up in Miami, I am still hearing go on down there about ICE raids and stuff like that. If it's between them coming here and becoming a Democrat versus them living in a potentially like, hellscape environment where they're not able to thrive. I really see the problem with that.

Scott Benner 1:15:50
Yeah, like, so beyond the like, the human side of that argument, what I'm saying is, is that every administration does that. It doesn't matter if it's Republican or Democrat. I do think that, like there needs to be, that's

Ashlyn 1:16:03
just, you have to create a call to action, and it always boils down to us versus them, you know, types of messaging. Yeah,

Scott Benner 1:16:11
I think my opinion is, is that the tactics are the same, and both sides use them, but when you're in power, you point to the other one to say how bad they are for doing it, and when they're in power, they point to you to say how bad you are for doing it,

Ashlyn 1:16:25
yeah. But I think that again, if you just zoom out of what you just said, that's the whole problem and the solution. There needs to be more than two people to point a finger. Yeah, right,

Scott Benner 1:16:35
right. Yeah. It would be nice if there was a third party, but that wouldn't help what they're trying to accomplish. So that's not going to happen. And I don't mean this in, like, a, I don't know, like, I'm not crazy, right? Like, I just think that this is what I think people in power do this in all sorts of situations, right? They they want to keep you focused on the thing. They want you to stay on their side, because they need to vote, or, you know, support, or whatever. And you know they're going to use what they know makes you the most upset, and that what makes you unable to even consider the other side's point of view, like they have to say something to you to stop you from even considering the other side. And I think, you know, going backwards to abortion, it's a great example of that, because, yeah, people should have autonomy over their bodies. I 100% believe that. And at the same time, if you don't think having an abortion is killing something, you're not being honest either. Like, so, like, like, so one person just plants their flag in the idea of, like, you can't have an abortion because you're killing a baby, and the other person plants their flag. And, you know, I there's personal freedom, and I should be in control of my body. Those are two honest statements, but nobody is willing to talk to the other person on the other side because.

Ashlyn 1:17:46
But my problem with this is that you but you're right, both sides of this are completely correct. Where I draw the line is where you start telling other people what they can and cannot do with their body. If you don't want to get an abortion, you don't want to live your life a certain way, then

Scott Benner 1:18:03
don't and Ashlyn, there it is that makes you liberal, or it makes you a Democrat, or whatever you want to like say, that's your line. The other person's line is you're killing a baby. So that's their line.

Ashlyn 1:18:14
But then what happened to the America is the land of the freedom, like freedom is for everyone, even if you don't agree with it. Do you

Scott Benner 1:18:20
want me to argue the other side? What about the freedom? The freedom for the baby? It's a clump of cells that you found your line. That's all. That's my point. Like I'm not disagreeing or agreeing with you, I'm saying that's your line, and the other side has their line, and they are so opposite that there it doesn't allow for

Ashlyn 1:18:38
convert. It's just we've forgotten about nuance?

Scott Benner 1:18:41
Yeah, well, actually, the truth is, is that this is already a worked out thing, right? Like, people who are pro choice have abortions if they want them, and people are pro life don't. And that's, that's the fix. The fix is, is that you're never going to tell somebody. There's never going to be a rule that everybody has to follow on anything like that's never going to happen. So you've made your arguments. Everybody knows what the what game you're playing now make your decision about which game you want to play, like, what, what field do you want to play on, and then go play your game. That's how society works. Most people, when you talk about most people are in the middle on abortion. Most people are in the middle. They go and do the thing that seems right to them. It's the argument that keeps going that is really just meant to fuel your fire. So this all keeps going. Because how could we have an election if everybody realized we agreed with each other on most things, most times like, then where do you get all the angst? Then, you know, like, it wouldn't even matter, like, who would even come out to vote? Like, hey, we all under agree. Whichever guy really wants it. Like, let him have it. Like, they'll go do the thing we all think. And meanwhile, those people don't get to run for anything because they lack the ability to make people upset, to motivate them to go. Out and do a thing. It's our fault as humans for needing to be upset to be in action. But

Ashlyn 1:20:08
this is this goes back to what we were saying before, about yay, the cult of person.

Scott Benner 1:20:13
In the end, it is what it is, right? So anyway, I don't know what that's got to do with going to a music festival, although I bet you, if you're on psychedelics in a music festival. You wouldn't give a shit about any of this, and that would be awesome. So yeah, anyway, if you're looking for my political stance, which I wish, I don't think I gave here one way or the other, I wish there was a third party in the middle that wasn't busy arguing about all this stuff. Was just talking about paying bills and filling potholes and stuff like that. But as long as I've been alive, that hasn't really worked out, and I don't imagine it's going to, as long as the game really is about fighting and not about fixing. So and you can take this and apply it to almost any argument you see in a Facebook group about diabetes or anything else. It's all the same. We just like to fight. We're good at it. I think it's how we're wired, honestly. So I don't know. Good luck everybody. And Ashley, it's interesting to talk about it with you, because you're half my age and you're not crazy. So I appreciate that too. So because there are plenty of people who say things like you and I talked about this right before we started recording, right? There are plenty of people who will say, like, this is right, do it. And somebody will say, well, like, I can't get that done. And they'll say, it doesn't matter, it's right. That's like arguing with a 12 year old. And you're not like that, which is awesome, because you have your opinions, and they lean in one direction, but you're not saying, Well, you know, I don't care what the other what everyone else thinks. I don't care what everybody else wants. Like, you're saying like, you know, like, there's got to be conversation in here to try to figure it out. And then we identify your line on a subject, and we know where you stand. And then, you know, people can keep talking about it. But if you heard any of this and you're mad right now for either side, like, you know you should be pro choice or pro life, or you should be like You're not listening to what I'm saying, like I'm not arguing for either side of that. I told you what I think. I think people should have choice, and I think abortion is killing something. Those are two very uncomfortable statements that don't jive with each other at all, but I don't think you can ignore them. They're true. So like, if you want to sit and argue, then go plant your flag and argue. And you can go do that the rest of your life. But if you want to have an actual conversation that leads to something, then you gotta, you've got to admit that both sides are true. You got to admit Joe Biden led a lot of illegal aliens into the country. He really did. It probably wasn't good. And now you're going to get an overreaction from the other side. And then that pendulum that we all just want to settle in the middle is just going to swing far right and swing far left, and it's going to keep doing that. And then you know what's going to happen is, you know, a bunch of stuff over reactionary stuff is going to happen this time, and then the next time it'll go back the other way, and those people be like, Ooh, it's a measuring contest. I'm in charge. Now wait, you see what I push through. And then they're going to say something insane, and then that insane thing is going to be the law of the land for four years, or, however, eight years. And then during that time, everybody on the other side is going to get super mad, and it's going to swing back the other way. What we're trying to do, what we should be trying to do is stop that pendulum from swinging all over the place, because it would be nice if it just sat in the middle, where most of us already agree. But good luck with that. Okay. You were awesome. Hold on one second for me. Thank you very much for doing this. You

the episode you just enjoyed was sponsored by the twist a ID system powered by tide pool. If you want a commercially available insulin pump with twist loop that offers unmatched personalization and precision or peace of mind. You want twist twist.com/juicebox, you Juicebox. I'd like to thank the blood glucose meter that my daughter carries, the contour next gen blood glucose meter. Learn more and get started today at contour, next.com/juicebox and don't forget, you may be paying more through your insurance right now for the meter you have, then you would pay for the contour next gen in cash. There are links in the show notes of the audio app you're listening in right now, and links at Juicebox podcast.com to contour and all of the sponsors, thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode, we've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link. Medtronic. Diabetes.com/juicebox. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. You

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