Scott Benner 2/20/25 Scott Benner 2/20/25

#1439 Slap Bang

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.

Marnie, UK diabetic (with a T1D mother) diagnosed at 17, overcame teen embarrassment, anxiety, and panic attacks—embracing community support.

+ Click for EPISODE TRANSCRIPT

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

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

Marnie is 30 years old. She's had type one since she was 17. Today, we're going to talk about the mental side of type one diabetes a little bit. We're gonna talk about management, some anxiety she had after a tough low. Marnie was embarrassed of her type one as a teen, but today, she does not feel the same way. All of that and much more right now, nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise. Always consult a physician before making any changes to your health care plan, don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com Are you an adult living with type one or the caregiver of someone who is I'd love it if you would go to T, 1d exchange.org/juice, box and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, T, 1d exchange.org/juice, box, when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box. 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 mis Bolus is or miscalculated carbs thanks to meal detection technology and automatic correction doses, learn more and get started today at Medtronic diabetes.com/juice box. The episode you're listening to is sponsored by us Med, US med.com/juice, box, or call 888-721-1514, you can get your diabetes testing supplies the same way we do from us. Med, you're Marnie. How old are you? I'm 29 soon to be 30. Okay. How old were you when you're diagnosed?

Marnie 2:18
I was 17. I've had diabetes 13 years now. Wow, look at you.

Scott Benner 2:24
Let me move this here off my whiteboard so I can write things

Marnie 2:27
down. I've made some notes. You made notes the stream, yeah, case

Scott Benner 2:31
you don't remember stuff about yourself, yeah, a

Marnie 2:34
bit of that. And also to cull the waffling. So I've got, like, a nice balance, so I've got, I've got some nice notes up.

Scott Benner 2:40
Okay, do you think you're going to be all over the place if you don't have no, I think

Marnie 2:44
so, yeah, yeah. Just like, you know some bullet points, a bullet point everything. So I'm very organized. Okay,

Scott Benner 2:49
all right, well, let's do it then. So how old were you said you were? How old? Like, 17.

Marnie 2:54
Yeah. Okay, yeah. So it was a bit Yeah.

Scott Benner 2:58
And do you have any other people in your family who have type one? Yes, my mom does as well. Do you know how old she was when she was diagnosed? It's weird, because

Marnie 3:07
I've just had a really panicked 20 minute phone call with her before I was like, I need some facts about you, mom. So she was 10 when she was diagnosed, so it was the 70s when she was diagnosed. How old is she now? She is, oh, sorry, mom, 6464

Scott Benner 3:25
Okay, yeah. Do you have other siblings? Yeah. Do you got two sisters as well? Yeah. Do they have hypothyroidism? Yes, my

Marnie 3:33
younger sister does. She's got thyroid issues. My older sister is absolutely fine, and I'm blind as a bat. So we always joke that I really, really got, like, the

Scott Benner 3:44
bad genetics in the face. Your eyesight has not been good. Your whole life

Marnie 3:47
always terrible. Not my whole life, I'd say, sort of early teenage years. It really, really took us off sort of a nose diet.

Scott Benner 3:55
What does terrible mean? Can you see your own nose?

Marnie 3:59
No, not anymore. No, like, I'm very, very short sighted, so cannot see anything, like even my phone. Sort of first thing the morning when I wake up, I have to hold it, like an inch away from my nose. Really tragic. Yes,

Scott Benner 4:10
like, you wear contacts, or, like, real thick glasses.

Marnie 4:14
Well, yeah, I've got contacts because my glasses are an obscene amount of thickness, like proper milk bottle bottom. So, yeah, stick to contact lenses. What's

Scott Benner 4:24
the professor's name in Harry Potter with the really thick glasses? Now, yeah, it's 100%

Marnie 4:30
that vibes when I've got my glasses.

Scott Benner 4:34
Oh yeah. I just figured with your accent, we should just lean right into it. Oh yeah, yeah. How about other, any other medical issues for you?

Marnie 4:41
No, I think me and my sister both started with a bit of Italy go, which I believe is auto immune as well. So we both got that as well. Again. Elder Sister, absolutely fine. So just Yeah, but that's about it really some sort of a health point of view. Okay,

Scott Benner 4:58
so you weren't really growing up. Were. You off to university or off to a job when you were diagnosed, what was happening in your life?

Marnie 5:05
So it was first year of college for us. So it's the two years before you head off to your college university. So it was the first year that sort of left high school, started college. And yeah, it sort of happened over Christmas, really. So I was very, very, very ill in I think it was November. I'd horrendously like, and I didn't I like to pride myself in I don't really get ill that often, and I remember it just absolutely wiped me out. Like couldn't get out of bed. I was so ill. And then that's when the fun, diabetes symptoms started slinking up and appearing but I had a feeling deep, deep down. I think I knew it was diabetes, but I put it off a very long time, sort of telling anyone that I thought it was so it was classic weight loss, and it was over Christmas, and I was eating like a little pig, and I was like, Oh, look at all this weight falling off me. She's amazing, like, to all my friends and, like, jealous, but, and it kind of got to the point where it was end of Christmas, and my mum, like, I've just spoken to, and she said she just remembers me getting up in the night go to the toilet. And obviously her being tight or diabetic as well, she sort of she saw four, four nights, consecutive nights, me getting up in the night and waking up going to the toilet. And she sort of told me, and was like, Look, I don't want it to be this, but I think we need to do a blood Meter Test on you. And the thing is, ever since I was a child, we'd always sort of be like, oh, let's all test our blood sugars with mum's testing kit, and we take it in turns. And I hated it, like I'd run away screaming, crying. My sisters loved it. They chased me with it, and I just would not cooperate. I hated that game where we'd all test our blood sugars, and I never took part in it, and my mum just told me that I literally took home my Sep dad, like almost like pinning me down to do a blood test finger on me at the age of 17. So she said, eventually it was just me hyperventilating, laughing, crying, hysterical, and just trying to get a bit of blood out my finger through the test. So she said she did the test, and I think it was 28 which is 504 Wow. On the conversion, yeah. So she was just like, Yeah, okay, it's happened you're diabetic as well. So got me into the doctor's first thing the next day with an urgent appointment. Think they tested me in the morning, and I was 32 which think is about 570 So straight away it was like, Yeah, your mom's got diabetes. You've got diabetes. Let's get you to the hospital. And I think, I think I was sent to the hospital, and I was not on a drip or anything, and my mom, my mom says they didn't say I was in DKA, but I must have had a crazy high blood sugars for a couple of months at this point. But I think it was just think of, Oh, your mom's got diabetes. Let's give you a shot of insulin. Get you on your way Bye. So, yeah, yeah. And I don't remember having my mom said the same, no, sort of IV, nothing. I just remember sitting at the hospital all day while they sort of gave me a shot long acting, gave me a bit of fast acting, and about tea time, like dinner time, be like, right? Well, your mom's diabetic, so she knows what to do on your way, so just sent me home. Then,

Scott Benner 8:25
did your mom know what to do? Like, was she

Marnie 8:29
yes and no? Because obviously they didn't. Didn't have my like ratios nailed. Didn't know how much longer accents give me. So I think it was just a bit of a wild guess. And I remember start sitting in my mum's car afterwards, and I had this massive sandwich on my knee, and I was absolutely starving to eat all day. I was about to take this massive bite, and everyone's like, whoa, whoa, whoa, you need an insulin for that. Now it's like, and I was like, What? What? I have to wait to eat this sandwich. So, yeah, I think it was a bit of like, just sort of hand me back off to my mom and be like, Oh, she's the expert. Off you go. We'll see you tomorrow. It's fine. So yeah, I remember that sort of first night, and she kept coming into my room like every other hour, checking my blood sugars, bless her, like just kept, kept sort of slinking in and turning on my little night light and checking me even though 17, I could fully have done it myself, but I know that she just wanted to do the best. Yeah,

Scott Benner 9:23
geez, when you think back on that time, did your mom and you have conversations about diabetes? Ever? Did you talk about it personally, or did you talk about it more like a caregiver to a child? 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 if I don't respond to the email, because I don't trust myself 100% so one time I didn't respond to the email, and the phone rings the house. It's like ring. You know how? It works. And I picked it up. I was like, hello, and it was just the recording was like, US med doesn't actually sound like that, but you know what I'm saying. It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it? Push this button if you want us to send it, or if you'd like to wait. I think it lets you put it off, like, a couple of weeks, or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it us. Med.com/juice, box, or call 888-721-1514, get your free benefits checked now and get started with us. Med, Dexcom, Omnipod, tandem freestyle, they've got all your favorites, even that new islet pump. Check them out now at us, med.com/juice, box, or by calling 888-721-1514, there are links in the show notes of your podcast player and links at Juicebox Podcast com, to us, med and all the sponsors. 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, diabetes com slash Juicebox.

Marnie 12:02
I ended the hour we didn't really, I remember, like, when we got back from the hospital, and I thought of texting my friends, and I don't think I really, like, obviously, I'm alone, giving myself shots up throughout my entire life. But you know, you just don't realize how big a part of someone's life, something is. And I think when I got home, I was texting my friends like, Oh, haha, I've got type one diabetes. We've been joking about it for ages, and I just thought, it's injections and what, like, that's all it's going to be and and I just remember going to sleep that night, and I spoke to him about this since, and I just remember having her just sobbing downstairs. And I think in that moment, I was like, Oh, my God, this. Like, if she's that upset over something, maybe this is a big thing for me, like, this is going to change my life. Yeah, like, we never really spoke about lot of things, and at the time, also I was just, I was, I was too young to sort of register what she was going through as well as me. Because it wasn't just about me, really. It was just, obviously, it was just a big thing for her as well. And I know she was guilty, and she said that to me since, but, I mean, it's nothing anyone could control, so yeah, sure, it was one of those where it was, yeah, a big, a big sort of shock to her, because we've spoken as well, and she, she sort of said she didn't know it was genetic. She didn't know it was sort of something that could be sort of passed on. So it was never something she considered, and any of us could get really,

Scott Benner 13:27
can I ask you have, as an adult, since this, do you find yourself being more compassionate for people like, Do you know what I mean, like, because, like, you know how you like? You see this with your mom, and you don't realize what she's like, what her life is, but you're living with her. Like, do you ever think like, oh, I took for granted what was happening to her, and does that like, spread out to how you how you feel about other people?

Marnie 13:53
I think so, because just getting that sort of viewpoint of, oh my god. Like, I remember she'd have, like, lows and stuff, and it was just like, oh, just what happens to mom? And then since that off the back of it and experiencing the low and experience the highs, and I just, yeah, I can look back now and think I really, none of us really asked the questions or appreciate what she kind of went through, deal with it and have three kids at the same time and work and, yeah, so I do, I mean, I've always been a bit of an empath, anyway, like, and I don't, maybe it did start from there, because I can sort of think back to that time. And I do think it, yeah, I do kind of take people's sort of experiences, emotions, and I hold them quite in high regard, really, when I am dealing with people. So it could very well sort of had a knock on effect to how I am now, yeah, I'll

Scott Benner 14:51
tell you why I asked. Because doing this, like making this podcast, and actually having, like, a big Facebook group, having that big Facebook group, and. Making the podcast has made me listen. I don't think I'm famous, Marnie, I don't, okay, but I think you are. Well, that's ridiculous, but people know, but a lot of people know who I am, right? And I speak out loud, and those people then look at those things and make decisions about how I feel. They don't know me, you know? They make decisions about what I'm thinking, and it's led me, like, even I don't know. Like, you see a famous person and people are coming down on them, or a politician or anybody, and they're like, this is what they're doing. I'm like, You have no idea. You don't know, and this is your assumption based on a tiny bit of information. Yeah. I mean, you can, like, I'm not saying you can't have your opinion. Like, maybe you just don't like me, that's fine. Or maybe you look at a certain person out in the public eye and say they seem to be a bad actor. They don't really want things to be calm, or what I mean, whatever it is, there's certainly you could make good decisions about people, but, yeah, making snap decisions based on something you see on Facebook or in a newspaper or something like that. Like, I don't do that anymore. Like, I just assume that I don't know enough to have a reasonable opinion.

Marnie 16:08
Yeah, yeah, exactly. It's like, you need the full contest context. Are you really about who someone is? And you'll never know that if you if it is someone through Facebook, you never got to know everything about them or the context of who they are. So it's

Scott Benner 16:20
hard enough to know when you live with somebody their full context, you know

Marnie 16:24
exactly, yeah, that's not helping me out, yeah, but,

Scott Benner 16:27
but you know, for like, even when there are people who are like, I think kind of, like, viciously, like, speaking against me, I always still think like, I don't know, like, maybe they saw something that really makes them think that they're the Good guy in this story. You know what I mean? Yeah,

Marnie 16:43
I never, I never understand that about people. Because I did see your Facebook post before that you did well, it's this evening to me about Yeah, don't you, yeah? So

Scott Benner 16:54
I liked it. Oh, thank you. I mean, it's in my head today, because, you know a person who has been methodically posting me and, you know, wherever they can for years, suddenly just showed up in my Facebook group acting nice. And I was like, What in the hell just

Marnie 17:09
happened? Like, yeah, it baffles me. Went

Scott Benner 17:13
through me for a loop. You know, use as an example. Like, I have my assumption about what happened, but I don't know if I'm right or not. Like, I actually think that it's possible that they just kind of like, you know, you can get into a group by answering the questions correctly, and I don't see who comes in, so they get in. And here's my worst version of what happened. They snuck into the group to like, Snoop, and then in the middle of the night, a post came up, and they got confused and didn't realize what group it was in, and they started responding to it. And now I see that they're that they're there, and they probably didn't want me to know. But if you give a more generous, like, maybe they just thought, you know, I keep saying stuff about this guy, maybe I'm not right. I should go look. And maybe they were just there, and maybe they were about to send me a beautiful note that's like, hey, you know, I've said some shit about you in the past, but, like, I see what you're doing here, you know, I don't know. But the point is, is I don't know. So I

Marnie 18:08
just find it all very confused. And I just think it's one of those things where it's just the internet, social media, has made it so easy for people to be so horrible to each other, just because it's behind keyboard and it's not in real life. And yeah, I just, I don't

Scott Benner 18:21
know. I've seen it in families too. They see people are, oh yeah. Seems like it's easy for people, no matter where they are, in fairness. But what, it really made me wonder, like, this, having this be a thing. I'm, like, back room going through today, like, and I'm not going through it. I'm fine, by the way. But good, yeah. It made me wonder, like, Oh, I wonder if you were old enough to, like, look and go, Oh God, we didn't realize this about mom, then you have this personal experience. And if it actually informs your real life or not, that's what I was wondering. Oh

Marnie 18:49
yeah, yeah, 100% Yeah. Like, it's just obviously we'd come to eat, she'd get out needles, she'd have a cheeky shot, and then we'd all eat. And apart from sort of seeing her go low, that was, that was the only thing I knew about it. Mom has to inject at meals, and sometimes she goes low and she needs leucade. And that's it like that. That was all sort of the information we ever took on or even asked about. We didn't even ask about it to be fair, like it's only when it was like finger pricking time, we all wanted, like to mess about that we'd actually ask things about it. I don't remember ever sort of sitting down having a frank conversation with her, just apart from like, Oh, when did you get diagnosed? Or what was that like back when you were a kid? But I think that's as far as it went, really. Yeah,

Scott Benner 19:36
no, I hear you. So do you head off to school soon after this. I

Marnie 19:42
think I did, to be fair. I think I was back in the hospital the day after my initial diagnosis. And why again? I think How did that happen? I think it was too because they just sent me off in some pens like me. Here's the sort of guesstimate. Bye, come back tomorrow. Actually sort you out. So, yeah, so got sent at home, and then went back the next day, sort of actually nailing some carb ratios. And how much longer acting to take. I was back in sort of the day after, and then I think I was back in school quite quickly, to be fair. And again, I think it was the whole thing of my mom's got diabetes. So it was a bit like, well, this, this isn't going to hold you back. You can do everything you needed to do. So I do think I was home for a couple of days and then went back to school maybe the following week. I just remember the first sort of bus journey, because I had to get the bus to get to school. And then it was my first time being on my own since diagnosis. And I remember just thought of being suddenly bus and thought of I felt a bit dizzy or or like I'd stumbled a bit when I got on the bus. And I thought, My gosh, is this? Is this low blood sugar? Should I check? Am I going high? And I remember just doing about eight finger prick checks on this sort of 20 minute bus ride, because I just got so in my head about like, oh my gosh, am I going low? Am I going high? Am I going to make it to college? Am I going to die on Route? I don't know what's happening, so I just remember sort of panic was sort of a big factor when I was going back. But that subsided quite quickly as well. I just sort of, I think, from what I remember, I think slid into quite a good routine. That quite not good because my control was horrendous, but I sort of accepted it. Well, I thought accepted it quite quickly. You

Scott Benner 21:29
just said something and then disagreed with yourself three times

Marnie 21:34
in a row. The only reason I've said that was because I convinced myself I'd accepted it, and it's only recently that actually accepted it.

Scott Benner 21:44
So what did pretending to accept it look like?

Marnie 21:47
Pretending to accept it was, I'll do my insulin. I'll do long acting. So I say, do all the meal insulin. I'll put my finger. And that's that's fine, but I didn't look after myself. So it was like I was meeting the bare minimum criteria to just keep myself ticking over, and I was still going out drinking loads, like doing all sorts.

Scott Benner 22:12
It's the first time I didn't understand you doing what,

Marnie 22:19
drinking and other things, like when you go to a party and stuff, other

Scott Benner 22:22
things like drugs, yeah, okay, go ahead.

Marnie 22:27
Yeah, specific. So just thought categorize it as other things one might do at a party, yeah?

Scott Benner 22:34
Well, I honestly wasn't sure if you meant drugs or sex. That's what I was wondering about.

Marnie 22:39
I mean, Bob, don't spray, but yeah,

Scott Benner 22:44
now's the nice time to say hi to your mom, in case she's listening. I know. Sorry, mom.

Marnie 22:49
I think you knew anyway, so it's fine. So yeah, so I did, yeah. It just wasn't like, it'd be things like. It was basically just me. It was like, I've heard other people say that, like looking after a little Tamagotchi, and as long as I just kind of maintained it a bit to the point where I wasn't really ill, that I was fine with that. So they'd go out drinking, and I'd probably do a test before I headed out. And throughout the night, I'd be like, Oh, my mouth's really dry. Oh, I've been chugging loads of tap water, and then I sort of just rage shoot a load of insulin because I knew I was really, really high, and I'd come back down. And by the time I did a test at like, early hours morning, but a beautiful, like, beautiful sort of number, so I could sort of convince myself that if I didn't test when I was high or low, it didn't count. And that was sort of my mentality with it. Like, if I flip through my blood meter and I see all these great numbers, like, granted, the bizarre times of the day to me, I was like, Oh, those numbers are perfect. Like, like, don't about the in between things I'm experiencing, because my blood meter says it's all great, and I'm doing really well.

Scott Benner 24:02
Would you purposefully test when you knew your blood sugar was good so you'd see a good number? Yeah,

Marnie 24:07
oh yeah, because it almost gave me that good feeling of all right. It might have been hard before, but look how great my number is now. Like, this is amazing. And same with sort of going to the hospital for my checkup, they'd go, I think I went every six months, and I was sort of in Adolescent Clinic, and they made you write down a log of numbers. And I remember just, I'd be sat on the bus out of the way there, and just make up numbers. I'd look for my blood me, because I'd always have to check, I'd check that I had good numbers in there, and then just fill in the gaps, and I'd write really great numbers. I'd throw in the odd high number so I didn't get too suspicious.

Scott Benner 24:43
Here, you were fantastic and, oh well, you missed a little and a better number. Feel like it might be real.

Marnie 24:50
Yeah, exactly, because

Scott Benner 24:52
I needed it. Question, though, at the end, doesn't the A, 1c reflect that that's not the case because

Marnie 24:58
of sort of the I've just. Cute load of insulin to sort of bring myself down. I did have quite a few not bad loads, but lows throughout the day when that be sort of on that roller coaster. So I think the roller coaster helped make my a 1c not look too I think I was sort of in the honestly late sevens, early, sort of eight numbers, when I was sort of around that time. So it didn't look horrendous to them. They were happy. They were sort of like, yeah, your a 1c. Looks fine. Off you go. How

Scott Benner 25:26
far did you go? Did you use different color pens? I've heard people, did you do that? Yeah,

Marnie 25:32
yeah. I had, yeah, I did. I had like a like, I'd have like a running out by row. I'd have like a gel pen, I'd have like a fountain pen, and I'd always switch over so it didn't look really suspicious. I'd be like, I'll do a couple of days in that blue Biro. I'll do one day in black because I could, like, oh, yeah, just first time I grabbed Yeah. No. There's a lot of strategic, sneaky planning going on. When back in those days,

Scott Benner 25:56
did you ever feel like I'm putting so much effort into pretending to do a good job? Maybe, maybe I could actually just do a good job. No,

Marnie 26:03
because at the same time I can, like, now looking back and everything I've learned from you and online, on Instagram and the Facebook posts and like, I just I knew nothing back then. Like, I didn't know anything like that. If I had a higher low number, I'd always be like, shrug. It is what it is. That's just diabetes. It's fine, like, I don't know what I've done wrong, whatever. So I just had, just didn't have the attitude to want to sit down and find out what was going wrong or how it could be better. And again, I think it was sort of the outwardly look like I've accepted it, but always in denial about it before I actually got control, and I did then accept it properly.

Scott Benner 26:48
What made that happen? Do you know?

Marnie 26:51
I think firstly was getting a CGM? So I got one. I think it was like second year after sort of COVID lockdowns, I think it was 2021 Well, that's pretty recently. Yeah, it was, to be fair, and I know it's quite late getting it because I think I can't remember if my mum got one before me or not. And yeah, because my mum lives sort of in a different borough, and when you're in different boroughs, the hospitals can have completely different sort of funding to have these things in place. So I think where she lives, she got a Dexcom. I was gonna Libra. I think she Libra, and then she was sort of showing me, and I thought, that's amazing. I'm gonna get in touch with my console. Since I did, ended up getting the Libra, which I've had since, I think it was just the ability to not be able to ignore things like I was doing before. So I'd see these sort of highs in between meals, or sort of going high overnight, then I'd come back in range before the morning, and I just thought, Oh my God. Like, is this what he's doing in between these four times a day, finger prick time, doing right. And I think it was just the knowledge of that's not right. It shouldn't be like this way, and I can do so much better. So I think that sort of got the ball, ball rolling, really. And then I saw and then that was the time where you couldn't go out, you couldn't do anything. So I just was Doom scrolling on social media for hours, and I remember seeing a girl, random girl that I follow, who's diabetic, she'd post about your podcast. And I'd never listened to podcasts before ever. And I thought, well, I've got all this spare time, and I like walking and running water so that I'll just get into it and start listening. And I was, I was hooked metal, and I've been, I've been listening to your podcast chronologically. So I'm on episode I think it's like 650 at the minute. So I refuse to do it out of order. So I've started episode one. I'm working my way through it in numerical order.

Scott Benner 28:55
How long have you been at that? I think 2021 you're only halfway through, I know, but they're gonna cure diabetes before you finish.

Marnie 29:04
Well, I feel like, you know when I see posts on your Facebook, great. I'm like, Whoa, spoilers. I'm not there yet. Advancements in medicine and things like that. I'm like, whoa, whoa, I'm not at that bit yet. Oh, that's so

Scott Benner 29:17
funny. You're like, Hey, I'm not gonna be there for like, three years. You can't tell me, yeah,

Marnie 29:23
not posted. I'm not there yet. That's

Scott Benner 29:25
so funny. Well, first of all, thank you. I appreciate you listening like this. So wait, this person you saw online, how did they motivate you again? You literally

Marnie 29:35
just shared about your podcast. Oh, and it was, I think it was really randomly, just some, some girl that went to university with basal, university. It was my sister. My sister was like, I'll give her a follow. She pulls back diabetes. Sometimes. I was like, oh, we'll do it. And I think she just shared, like, just a link to your podcast. And I was like, Oh, I'll check that out. I'll have a look.

Scott Benner 29:53
If you said you're not a podcast person, right? So just meaning you weren't listening to podcasts, did you know you weren't. Doing well, like, what were you looking for? Were you looking like? Why would you go listen? I guess

Marnie 30:03
I think I just wanted answers. So, like, something had happened. So I thought, have my breakfast. I can't count everything so precisely. And then I had my insulin, and then I'd be like, I've nailed this. I can't wait for this beautiful wine after breakfast, that's going to carry me through to lunch, and then my blood sugar just shoot up or drop, and I'd be like, I just can't understand what I'm doing wrong, and I wasn't getting answers from part of the hospital or anything, because it's very sort of cut and dry, stick to your carb ratios. Done. There is sort of opportunity to do week long courses here called Daphne. I don't know what it stands

Scott Benner 30:44
for. I know. Yeah, people bring up Daphne, by the way, you're in England, right? Yes, yeah. Why does your accent feel? I hope this isn't insulting. Why does it feel a little Scottish once in a while? Oh, really,

Marnie 30:56
you know what? I was just in America last week, and so many people said I found it Irish. Yeah, okay, yeah, a bit of a Celtic swang, I don't know. I think I'm very northern. It might be that maybe, yeah, I

Scott Benner 31:09
just, my brother in law is from Scotland and, like, when you just said, I don't know, when you just say, I don't know. Again, don't know you did it differently that time we poshed out. Like, oh, wait a second, a little too Adele, a little more. I just wasn't sure if you were, like, near a border or, like, something like that. But,

Marnie 31:31
oh no. Mike, slap bang, near Manchester. Well, slap

Scott Benner 31:34
bang is probably what I'm gonna call the episode. But, um, no,

Marnie 31:38
I don't been thinking that. But try not say anything too silly. In case you might write there's the title, thanks, die

Scott Benner 31:44
on route was in my head, because you're like, I didn't want to die on Route. Like, talking about being on the bus. And I'm like, that sounds too harsh. Yeah, that's a bit of morbid that one. But slap bang seems very like people would be like, Oh, what is this going to be about? And then this is gonna be thrilling. It's just me waffling. Well, you said, but before we started, you're like, you know, I'm gonna waffle. About You said, and I said, ironically, I just had a waffle. And I think you thought I meant I was just off, like, speaking, like, weirdly and backwards, yeah, but I had literally just eaten a waffle. I

Marnie 32:16
did not, yeah, that went right over my head.

Scott Benner 32:18
My son and his girlfriend are here today. It's a holiday here today. They were like, we'll make breakfast. And I came downstairs right before we recorded. And they're like, Wait, we made waffles. And I was like, okay. Then I came upstairs, and five seconds later, you're just saying waffle over and over again. I was like, Oh no. I just think you meant talking to me. I thought somebody was watching me. Yeah,

Marnie 32:35
oh no. Well, you charge a waffle anyway. Okay, so

Scott Benner 32:39
you saw someone online. You decide to try a podcast, it's great, and you were having trouble, like you said, you were making boluses then just thinking, like, here it comes, my perfect blood. But it just wasn't happening. So what did you figure out?

Marnie 32:50
No, it was just as a as a listen more and more things like, you know, like consider fat and protein and exercise, and just everything you speak on, really, on the podcast, that is a variable. And I just, I'd never been taught that, and I started sort of listening more and more and experimenting and messing them out with my doses. And just sort of slowly, I'd start seeing those beautiful, smooth lines that I'd always wanted, or I could sort of take insulin and just be so 100% confident on what where I'd be sat three four hours later or overnight. Like my overnights were ridiculous. Like I could be getting a screaming high line like two in the morning or low all night, and I just could not figure out twice as me so as I was listening, sort of putting things into practice, I was like, Oh my God. Like, it can be doable. It is doable because I kind of just accepted, like, Oh, this is just how it's going to be for the rest of my life. Like I think off the back of that as well, my eyes screened, and I started getting background retinol in one of my eyes, and that just absolutely terrified me, because me, up until that point, I was untouchable, and everything I was doing was enough to just keep me ticking over, and it was sort of that, and I just thought, Oh, my God, I need to look after myself. Because that was, I'd say that was two years ago, and that's only 11 years having diabetes, and I'm already sort of getting things going wrong, so I just thought, I need to get my

Scott Benner 34:26
together. Basically, I have a bunch of questions around this, but what it feel like when you started getting results that you expected? Was it fun? Almost,

Marnie 34:35
yeah, it was almost like, like, winning a game. Almost, I was like, oh my god yes, and I'd see a great number, and it's like, I'm just winning at playing the game with diabetes. Like, I was like, Oh, look at this amazing score I've got

Scott Benner 34:46
today. So then the question is, is, what did it feel like when it was going wrong? Ah, just,

Marnie 34:50
just like, I would always, I'd be very harsh on myself that it was going wrong, and I'd always be like, You didn't need that extra piece of toast. The breakfast that you didn't bowl us long enough for. And I was very sort of, I think it was just re learning things that I just need to focus more on and not ignore, like just I'd always thought I'd be told by if you're going to go off an exercise, be a bit higher and listening to you and learning things. I realized that it doesn't have to be that way. I can have a beautiful, smooth line and do exercise and eat a massive carby breakfast. It doesn't have to be sort of one or the other. Yeah,

Scott Benner 35:30
that's wonderful. I guess you never really knew about your mom's management, right? She didn't share it with you. You didn't share yours with her.

Marnie 35:38
Not so much. No, obviously she had. She had to talk a big part in helping me dose for things initially. Thing is, when I got diagnosed, I was given, I was put on pen straight away, and my mum was still on pig insulin, so she'd have to mix up two vials herself in a syringe, really. Yeah, yeah. So that, that was 13 years ago, and I think again, wait, wait,

Scott Benner 36:01
13 years ago. I gotta stop you. 13 years ago, your mom was still using beef and pork insulin. Yeah,

Marnie 36:07
she was, yeah, yeah. She'd have the two virals that she had to mix up. What the heck I know? And again, I think because she'd seen me go faster and get these pens, she'd gone straight back to her consultant and been

Scott Benner 36:18
like, where are my pens? Yeah. How come no one mentioned this right from her

Marnie 36:22
point of view, seeing what I was getting and the glucose meters I was getting and the pens, she then went back and got put on pens as well straight I think it was straight away. It might have been a bit of a wait for her, but yeah, so she sort of off the back of that. Got something else out of it as well. With me being diagnosed, I've

Scott Benner 36:39
never heard anybody using it that recently,

Marnie 36:43
really, yeah, she Yeah. She was literally using it even sort of past the diagnosis, till she got thought about 10.

Scott Benner 36:50
Well, I mean, if 13 years ago is is 2010 is that right? Yeah, yeah. And your mom was diagnosed in the 70s, yeah, yeah. Did they forget about her? Or was she, were they would was she not going to a doc? Maybe she was going to a time machine to go to her doctor, not a car? No,

Marnie 37:07
I'm not sure. I don't know whether it was maybe she was just comfortable again. This is something about maybe she was just comfortable with doing it, but then saw how easy it was, you know, just having pens and screws

Scott Benner 37:19
like that's, are you sure about this? Yeah, probably 100%

Marnie 37:23
watch me be absolutely telling lies, though you'll be like, I never did that. No, I'm she was 100% on Baal insulin with the Yeah,

Scott Benner 37:31
talking, was it regular in mph? Maybe? Oh,

Marnie 37:35
I don't know. No, I always remember saying it was Park insulin that she was on. Let me say

Scott Benner 37:40
this, even if it was regular mph, still 13 years ago, right, right, yeah, oh, that's goodness. So she sees you, she's like, Hey, apparently there's better stuff nobody told me about. I think

Marnie 37:50
so, yeah, just like, Oh, that looks, that looks a lot easier than shaking up some vials and stuff. Is

Scott Benner 37:56
it possible she got in one of those Harry Potter cars, went back in time, and that's when she went to the doctor, because you do have the steering wheel on the right. Wheel on the wrong side. So we do, yeah, I don't know how they work. I

Marnie 38:07
don't know it's possible, but yeah, she was, yeah, but she got on pens quite quickly. I think after Okay, see me get pens, yeah, okay, all right. All sorted out on the end.

Scott Benner 38:14
Then okay. Now fast forward to a couple of years ago, yeah. And you're like, suddenly, like, putting it in someone like, watch this. Watch me not spike. Watch me go walk without getting low. Do you go tell her?

Marnie 38:24
Yeah, yeah. To be so we've had a few conversations in pure because I would, like, I just wouldn't bring it up before, because I knew I was doing badly, and I didn't want questions to get turned back round to me and be like, how are you doing? And then I have to go look at my amazing blood sugar log. That's all fiction. So just one of those where I just thought, if we don't, if I don't bring it up, no one's gonna ask me too much about it. So off the back of that, since we have, sort of, I did sort of say, Oh, I've started listening to this. And have you ever thought about what you're eating, and, like, how things are digested, and fat and protein and all this. And she was like, Oh my gosh, yeah. But she's, I think she's sort of started doing her own research as well. So she's sort of very susceptible to, she walks a lot, like, she does a lot of exercise. And because she exercises so much. She does have quite a few sort of, like, low blood sugar sort of experiences, yeah. And then I think she has asked both MDI and she sort of gone and asked about a pump, because then she can sort of microdose herself with basal or shut it off when she's walking at the minute, she's just, yeah. But again, it's kind of one of those where, over here it's, I think she got, you need really good control to get a pump, which is what she was told. But then her argument is, but I want a pump to get the really good control. Because at the minute, it's just a lot of high pose of exercise and things like that. So. It's just one of those where you've really got to justify asking for a pump, and there's always a lot of pushback on it, really. But yeah, we've, we've had conversations since about, sort of, how's it going, or this is what I've started doing. Have you considered this as well? So yeah, we talk more about it now. Definitely

Scott Benner 40:18
very nice. Your note says that you want to talk about, like, anxiety and having panic attacks, being afraid of being judged. Can I hear about that? Yes.

Marnie 40:27
So, yes. So 2023, was the year of the panic attack. For me, a year

Scott Benner 40:34
set of the Chinese calendar I'm not aware of, oh god.

Marnie 40:38
Definitely not. Basically. So just for a bit of context, I have never had a stomach bug since I got diagnosed, which is bizarre, because I used to work in a primary school and in the office, so any sickly child got sent my way, and I've been thrown up on a million times. If I had a pound for every time been thrown up on, I'd be a millionaire. Yeah, and I just never had experienced a stomach bug ever. And it was my it was sort of a first birthday party, and we went and everyone got deadly, deadly sick off the back of it, like really bad vomiting bug. And I remember sort of getting up the day after the party, and I was like, Oh, Jesus, I can't get my blood sugar at all. And I was just eating and eating, went out for a nice breakfast, and I was like, I want to be really conservative with my insulin, with this because I just maybe it was just all like drinking the night before at this party. And I was like, Wow, just be conservative. I won't do too much. I just remember all day we're driving back home, and I was like, Oh, I just feel a bit feel a bit rough now, and my blood sugars are still tanking. And then got back home, back and my mom dropped me off. I was like, like, the flood gates opened. I was just violently unwell. But as I was I was like, my boyfriend was home, and I was like, Oh my God. Like, I'm actually getting really worried now, because I was just chugging juice after juice, and this is thing. I hadn't got this bit on your podcast yet, so I didn't know about so I was like, I got that part yet. So I was just like, Oh my God. Like, I think, I think we might need to go to hospital, because I'm starting to panic a bit now. So I went to hospital, which was an absolute waste of time. So I had drank about five juice boxes at this point, and then proceeded to throw them all up. And I was getting a bit worried, and I tried calling the we've got, like a non emergency number over here. So instead of calling like 999 you call a different number, and they put you through sort of non emergency, but you still get to meet someone straight away. And I was kind of like, can I have glucagon for this? Because I think I had heard Inklings about microdosing glucagon, but they were just like, Nope, no, you can't. You only do it if you're unconscious, we can get you an ambulance, but it'll take about four hours. So I was like, Oh my gosh. So my boyfriend ended up driving me to sort of our sort of local emergency department, and I got seen, and they just gave me a handful of anti sickness pills and sent me on my way. I think I was borderline DKA when I went in, because I remember just driving home my boyfriend, I could not keep my eyes open, like I just felt drained, like my boyfriend was, like you your eyes were literally like rolling into the back of your head. You were that lethargic. So went home, managed to get myself sorted out. My mum, bless her. She then got hit with the same sickness bug the same evening, and she was admitted to hospital for two days on drips, and sort of when I'll speak to a couple days later that I think I should have been admitted as well, rather

Scott Benner 43:45
than just me a handful of pills and shooed me away.

Marnie 43:49
So thankfully, wasn't sick again after went to uni, and when she sort of picked my fingers like, Oh, you're 4.1 which I think is like 75 for you guys, she's like, No, you're fine. Bye. Here's your anti sickness pills. Enjoy. So, so that happened, and took me a bit of time to feel right again. I was like, All right, that's behind me now. That was grim, but we're back on track again. And then I went to another first birthday party in September, I know, was it November and the exact same thing. So I'd never had a sickness bug ever, and then two in one year. And this time, I was a bit more prepared. And I was like, I'm going to oh gosh, it was horrible. I didn't have anything. I had a pot of jam, and I was just rubbing it into my gums in between being sick. But it worked like a charm, and I made sure to keep drinking water when could SIPP in, and I knew that I needed to have insulin on top of that. So this time, managed to stay away from the hospital. Felt a bit more prepared, so managed to get through that as well. And I was I was less panicky that time, so I was like, what. Like, okay, surely this can't happen again anytime soon. So went through all that last year, and then I started the anxiety started creeping in. So if I had a beautiful day of blood sugars that were trending low, but not, not sort of going hypo, right, I'd start having this thought at the back of my mind, like it's gonna happen again. You go in low because you're going to be sick again later. And it's not the being sick that was scaring me. It was just how helpless I felt in both those instances. So just

Scott Benner 45:34
sitting there with your Winnie the Pooh jar, rubbing your gums, yeah, try not to, try not to get too low.

Marnie 45:42
Literally, pants on as well. When all this happened, until it was very Winnie the poo. I

Scott Benner 45:47
mean, you said jar of you said jam. I wish you would have said honey, but

Marnie 45:50
nevertheless, I know. Oh no, I did. I did have honey sachets as well. Just sort of, yeah, so yeah, it works.

Scott Benner 45:56
Before we dive into your anxiety about, like, oh my god, I'm gonna get sick. I'm gonna get low. I have like, I'm gonna forget to say this. So a while ago, you said, if I had a pound for every time a kid vomit on me, I'd be a millionaire. I thought, How come you measure a pound? But then you go to million. Like, why? Like, shouldn't you? And then I did the math, yeah, shouldn't you say if I had a pound for every time you get vomited on me, I'd have 446 Imperial tons. Oh, I see, yeah, no, sorry, no, but, I mean, why does, do you see what I'm guessing 100% I

Marnie 46:31
think it's just, it's the waffle thing over again, isn't it? But

Scott Benner 46:34
the term for a million dollars, in like, British, like parlance, is a million dollars.

Marnie 46:39
I would say, yeah, no, yeah. I could have called it quid instead. That would have been even more confusing.

Scott Benner 46:44
No, I would have, that would have made me think of Quidditch, and then that would have taken us down a whole horrible road thing. But it's interesting that it's like a pound is like, I know a pound is money for you, but it's a weight here. And then you go, and then when you go to a million, you go to wooden anyway, yeah?

Marnie 47:01
Like, yeah, the math scene, math thing, yeah, this don't make sense, is what I'm saying. Sorry, I'd be very rich. I should have said,

Scott Benner 47:11
I just wish you would have said, I'd have 446, Imperial tons. Yeah, imagine you'd have to do the reverse math. Though. I had to ask chat. GB thing. I was like, hey, figure this out real quick, because I wanted to keep listening to your story. I didn't want to be the one doing the math.

Marnie 47:25
Oh no, yeah, just I'd be very rich. So even if

Scott Benner 47:29
you had, like, a great day, yeah, you started to go back to that place of like, I'm going to get sick. My blood sugar is going to be low. I'd be sitting around helpless. Now you're back on the bus again.

Marnie 47:38
Yeah, yeah. And it was like, it would happen every now and then, and then I do this thing where I'd be like, I'll just quickly drink half a juice just to check, just to check that things are digesting as they should be, and I'm not going to go high and I'm not going to go low and be sick. So I got into this really bad pattern of I'd have really nice grass, and I just couldn't rationalize in my head that I'd put in the work to have the nice grass, because this anxiety was just clouding everything. So I knew that a dose for breakfast personally, and factoring protein and all that stuff, but the anxious thoughts were going, No, you didn't you don't know that you're going low because you're going to be sick again and you're going to be sick again, and you're going to be in that helpless position again where you need help and you're in that horrible place started sort of stacking up, and it just got worse and worse. And I was at work whenever my first panic attack. And again, I'd had a day where I'd had a new I'd tried a new breakfast. I didn't have any sort of nutritional information about it, so I guesstimated, and I've nailed it, but I then was doubting the fact that I didn't have nutritional information. Like, how can you have nailed it? Like, you've completely guessed and you've got it right? No, you haven't got it right. You're going to be sick later because you've got low, like, personal, lovely, low blood sugar. Now, were

Scott Benner 48:58
you having compulsive thoughts about anything else? No, no,

Marnie 49:00
that's yeah, it's just not in my nature. Yeah, surely this, I just got so fixated on it, and to the point where then I was in work, and I've had breakfast and I was drinking a juice, and I thought that juice will sort me out. I'll have done my testing where I'm like, drink the whole juice, even though, you know it's going to send you high, and it didn't. So then again, the anxiety was building. I was like, Oh my gosh. You thought that was going to happen, but the low blood sugar is still that, and they weren't even really low. They were just sort of nicely, sort of kicking my LOW Alert, yeah. And then I went and had lunch. And again, a lunch had not had before, no nutritional information. And I ate that, and the same thing happened again, where I just sort of guessed, and the guest very well, but my brain was saying, You've not, you've not nailed it. This is the low blood sugar because you're going to be sick later. And I remember just sort of being sat at my desk, and I thought, Oh my God. Like I breathe, the room's closing in, and I just, like, ran off to the toilet. Just had a full on. So. Lot of meltdown. Ended up having to sort of bring my manager and be like, I need to go home. Basically, like, I just need to be somewhere safe. Like, not because I live sort of an hour's drive away from work, and all I could think of was like, I just need to get home and be somewhere where someone can keep telling me, someone knows what's going on. Like, my boyfriend was at home, and it was just like, so that was first time that happened. And then I had another time where my boyfriend was on holiday, and I started sort of getting anxious the week before, I was going, like, you're gonna be all on your own if it happens, like, if you if you get a stomach bug and you're low, no one's there to help you. And I just got so anxious, to the point where it got on his plane and gone, and I just couldn't eat because my stomach was in knots. I was just checking my blood sugars all the time. I was just thinking, Oh, who's most likely was pick up the phone at two in the morning if I do stop being sick and I need help and I need driving somewhere. And it just became this horrible, like overshadowing thing in my life that just Yeah, thoughts you couldn't

Scott Benner 51:03
stop having. So I want to ask you how you got rid of them, if or if you did. But first, I want to point out that you've said in the nicest way, like the dirtiest double entendre thing that anyone's ever said on the podcast. You said tickling my low alerts.

Marnie 51:21
Oh no, I know I didn't say it, therefore I could have thought of a better one. I just thought. I thought it was just a nice way of putting it. Was

Scott Benner 51:28
a nice way of putting it. I was like, oh my god, somebody heard that wrong. Oh, it sounds like a terrible child blind or something. I'm too embarrassed to tell you what I just did.

Marnie 51:38
Oh, I'm gonna need to know now.

Scott Benner 51:41
Oh, my God, you don't have to No, it's just, Oh, you don't have to be a lot. I gave Hold on. It's just, it's so stupid. I gave my chameleon this kind of worm that he doesn't seem to love, but I put it in there to see if he would like it. And I left his doors are open right now because I want him to have some air. Yeah, and the worm, just like, went all the way to the bottom of the cage, then crawled out of the cage, fell on the floor, and was walking across the carpet. And I thought, I'll just get that when I'm done. And then I thought, what if it goes somewhere and I can't find it? I'm like, let me just go get it now. Anyway, I'm just embarrassed because I have a chameleon and I'm an adult, but he's great. I love it. Do you still feel that way? And if not, how did you get past it? No,

Marnie 52:25
I feel so much better now about it. And I did start. I did start going down the route of, I think I need a therapist. Really helped me with this. It just felt all so all consuming. And I did sort of have like a little like taster session. And she was like, this is what we'll work through stuff like this. And I thought, oh, yeah, I think I should probably give this a go. And I was like, I'm going on holiday. Let you know when I'm back. And I just had, like, the simplest conversation ever with my mum. And and we were sort of visiting family and, and again, it's, this is another sort of side part tangent to the whole, like, anxiety thing. It made me really wary of hanging out with kids, and, like a lot of kids myself, but like, I've got a few sort of younger sort of family members, and it was getting to the point where I'd be really sort of like wary about, like, Oh, don't get too close, just in case they're ill and then they make me ill. So we'd sort of gone visiting my sister and her little girl. I was just saying to my mum, like, did you ever get really scared after what happened to us both last year? Like, is it not sort of set you back or anything? She just looked through and she was like, no, because we're both here, and why would you like that stop you living your life? And that's all it took. Just three weeks ago. Won't be the worst thing that's ever happened. It hasn't been the worst thing that's ever happened to you, and we're both here, and you can't let let that stuff stop you living your life. And it was almost like the simplest thing ever, and I just hadn't thought of it like that.

Scott Benner 54:02
Your mom's like, way worse crap is gonna happen. Don't worry.

Marnie 54:06
I just, like, I knew what she meant. And it was like, wow, yeah, you're right. Actually, that's all it took, really. I think, like, I follow a few sort of people on Instagram who've got diabetes, and a few of them would post about the same thing. I think it was just the whole, oh, this has happened to other people, and they're fine. And yeah, it might happen to me again. It probably will at some point in life. And my mom was like, but you know how to handle it, yeah? And I was like, oh, yeah, it's just that easy. Why didn't I think of this six months ago, and I was panicking all the time. Do you

Scott Benner 54:41
have glucagon in your house? I do, yeah, yeah.

Marnie 54:45
I've got a big stash of it. Now, after the vomiting,

Scott Benner 54:48
we just moved Arden into a different college situation, yeah. And we were like, she and I left her room to go downstairs to get some more stuff to bring upstairs, and we were in the elevator. By ourselves. And I was like, hey, in case I haven't said this recently, I'm just gonna say this. And she goes, okay. I said, um, you can give yourself glucagon. It's not just for when you're having a seizure. And I was like, but if you find yourself in a situation when you're like, Oh God no, I'm not gonna stop this. I was like, there's it's okay. And she was like, I know. And I was like, all right. And I just, I only brought it up because she's in a setting now where she's in a multiple room, so she's by herself in a bedroom, yeah, but in an apartment with multiple bedrooms, but everyone's doors lock when they close them, oh, I save i Okay. So in her last setting, like her, her roommates could have walked into her room if they wanted

Marnie 55:44
to, yeah, yeah, yeah, yeah, she needed help.

Scott Benner 55:47
And she was like, Okay. And I was like, All right, just don't forget that part. And she's like, Okay. And then that was sort of the meanwhile, like, lows are very infrequent for Arden, yeah, but still, you don't know, right?

Marnie 55:58
You know, it's just better known, isn't it? Just yeah, just double checking

Scott Benner 56:03
it's never happened once. When I thought, Oh, I bet you, Arden's gonna get really low today.

Marnie 56:07
Like, yeah, you know exactly, yeah, it's always the uh, the curveball lows

Scott Benner 56:13
just happened. But so your mom just, what do you just gave you some extra perspective. You think, yeah,

Marnie 56:18
I think it was just, I think it was, I just felt very alone with it, because obviously I'd speak to my friends and they could sympathize and speak to family, they could sympathize, but I just it was almost that feeling of pure like helplessness, like I'm doing everything I've been taught to do to fix low blood sugar, and it's not working. And it just felt like that utter lack of control, yeah, was just spiraling me out. And just for the fact it came and I had spoke to mom, since we were both fail, and she'd sort of touched on, like, yeah, no, just carry on. It was just that moment she was like, You can't let you can't let this just like, consume Yeah. I just thought, oh my gosh, yeah. So Right.

Scott Benner 56:58
Good for you, well, good for her to to give you some good advice.

Marnie 57:02
Definitely, it's just like I needed someone else in the same situation to say it to me, just like you can't put your life on hold because you're this scared.

Scott Benner 57:11
Yeah, wouldn't it be crazy if, like, three years from now, you got to an episode of the podcast that said that, and you're like, oh, no, I would

Marnie 57:20
have found that I had actually posted in the Facebook group about it, but I know it's very specific niche. And again, I think I've done a bit of a waffle we post. Because I was like, Oh, I don't like, Has anyone experienced it? And to be fair, a few people had sent me episodes to listen to just about, you know, like fear of hypos and hypo and dieting stuff that that did help with the just the functional stuff,

Scott Benner 57:45
but not the psychological part of it, yeah.

Marnie 57:48
I think it was more just how specific the things that I prompted to hear was, yeah. Did

Scott Benner 57:55
you ever hear the episode called worry is a waste of imagination?

Marnie 57:58
Is it pre episode 656, let

Scott Benner 58:03
me find out. That's interesting question. It might

Marnie 58:04
be because I've actually that rings a bell that title it

Scott Benner 58:08
just it always occurs to me, I don't know where I heard that first worries, a waste of imagination, is episode one, 156, is just lovely. Yeah, just the idea that when you're worried about something. You are just making up a scenario in your head and deciding to treat it like it's actually going to happen. And now yours is a little more specific, because this has happened to you in the past, but, but sort of, I mean, it's not the same, but it is the same. And, you know, so you I can see that, though, get that in your head, but that's not really the crux of the problem. The crux of the problem is that, and I'm guessing, just from listening to you, it's that spot where your effort won't overwhelm the problem, and there's a finite end to it, because you could have a seizure. And what do you do? Like, right? Like, that's, that's where the fear is right? There is that? Right? Yeah,

Marnie 59:02
yeah. 100% Yeah. It's just the lack of contour. Like you said, everything you've ever been taught to fix that is not fixing it. And then the panic sets in because you're like, Oh no, this usually works. Like, Oh dear, this isn't going the way I wanted it to go all planned,

Scott Benner 59:17
and I don't have unlimited time here. No, that's fine, yeah, right, right. You're like, there is more, like, I'm gonna run out of time before I get this fixed.

Marnie 59:27
Oh, yeah, yeah, yeah. Almost like it's that sense of sort of impending do, like you sort of get an inkling of that anyway when you start having a Hypo. Just thought of the Doom feeling, but it's nice. Just that times a million,

Scott Benner 59:38
anybody who's had, like, awake, conscious, like, seizures, low blood sugar incidences that they've talked about on the podcast, they all mentioned this moment where they fit their last thought is, up here, I can't see Yeah, like, yeah, it's coming, and I can't stop

Marnie 59:54
it right now. Yeah, this is the clock now. Bye,

Scott Benner 59:57
yeah. Well, that's not imagination. That's a real worry. And, and I think we don't talk about that very often in the space, like in general, and I tried to bring it up periodically. I, you know, I've, you'll hear me in a couple of years, tell a story about being it, um, about being at this event where I was speaking in front of, like, probably three, 400 people, if I remember correctly, yeah, and a lot of them were newly diagnosed adults, or were the spouses of those adults. And I just brought up, like, hey, you know why it's so important of glucagon around. And when I started, people were like, why? What is that? And I'm like, wait, what you know? And then, as you explain it to them, like you could see, they were like, Whoa. No one mentioned that. Yeah,

Marnie 1:00:41
that's that's the thing, yeah, because I've had glucagon from the get go, ever since diagnosis. But I don't touch wood. I've never had to use it. I have had two seizures before, but I've never How did you get out of them? I don't know how we got fixed. Actually,

Scott Benner 1:00:57
were you by yourself?

Marnie 1:00:59
The first one, I wasn't and my friend poured a whole bottle of full sugar lime cordial all over my face. So when I woke up upside down my bed later on that day, I stunk of limes. And then the second time, I think I was on my own, and I think I think I knew it was I knew it was going to happen. So this was after a night of drinking and being silly. So I drank a whole bottle saved, and I think just the timing was I had a seizure, and then I started coming back out of it the other side. But I think I just took myself to bed and just, yeah, wow, yeah, I know funny.

Scott Benner 1:01:35
That didn't make you worried. No, exactly. Oh, yeah, but you're older now. Just so silly and

Marnie 1:01:41
careful. Yeah, you just don't care. Yeah, now I'm old and just worry about everything.

Scott Benner 1:01:46
Yeah, when you're 17, you're like, I

Marnie 1:01:51
almost died. My sister came upstairs and she was like, what has gone on downstairs? Like, she's like, there's blue seed everywhere, like a big stain on the rug. And I was like, yeah, no, I think, think might have had a seizure last night, but I was like, fine. Now, Director,

Scott Benner 1:02:05
yeah, what are we doing now, right and now and now, you're like, today, I want to live right so, like,

Marnie 1:02:11
if I can stave that off, I will do Yeah, just It's mad though, just the attitude shift of being a very, very silly 1718, year old and for now, yeah,

Scott Benner 1:02:22
think that's just maturity or time, or is there something that happened to you that made you think, like, I should value my life more? Yeah,

Marnie 1:02:30
I think it's just the whole and I think this is for everyone really. Well, I don't know if everyone feels like this, but I think just, you just feel so untouchable when you're young, like, you just think, like, bad things happen to older people, or it's older people that get ill or pass away and things like that. And I just think you just feel like you're so untouchable that you can get away with all this stuff. And then as you get a bit older, yeah, and you just realize that it's not true, like you need to really look after yourself. You need to you are in charge of yourself, and it's only you could that can be sort of putting that effort in and making making sure that you're gonna have a long and healthy life.

Scott Benner 1:03:10
Wait till you get older and you wake up injured that I'll tell you, I'm not kidding, like you wake up from being asleep and you're like, Oh, I hurt myself while sleeping. Oh no. That's when you realize, oh, I'm old.

Marnie 1:03:23
You know what? I think that's dying already. I've got a recurring, like, nighttime neck injury,

Scott Benner 1:03:30
recurring nighttime neck injury, ah, yeah, we had to move hard and out of an apartment very quickly. So we, like, went on this 700 mile drive, got there, like, ate food and went to sleep and then got up, like at five in the morning, packed the car, then drove 700 miles home again. Is horrifying, but the part of it that is relevant to this is that we got there and I realized she had brought a friend with her. You know, she had a bed that she could sleep in, but her friend needed a place to sleep, too, and there was no other furniture because she hadn't fully moved into this space yet. No. So I just, I'm like, this will sound pejorative to some people, but I think it's just accurate. She's a girl, so she has a lot of pillows. So I said, let's just lay these pillows out in the shape of a mattress, and I'll tuck a sheet around them to hold them kind of tight, and I'll lay, I'll sleep on the floor. It's like, no big deal. And they're like, no, no, no, no. And I'm like, Well, where do you like this? Is it like? I make you guys say, Yeah, Holy Christ for a week, my neck.

Marnie 1:04:36
I'm not surprised. You've always look at like a makeshift bed like that. And you think that'll be fine. And then you sort of get on it and you you're like, Oh no, I'm not sleeping tonight at all. Listen,

Scott Benner 1:04:45
this is just for one person, but the editor, the guy who edits the show, he just went on, like this, like bike ride, where he he camped out in this, like, small tent that he kept. And I text him, bro, like, are you all right? Did you sleep in that? I. For choice. He chose this. I said to him too. I was like, you're old, you know, you got to be careful. Oh, yeah,

Marnie 1:05:05
no, my camping days behind me. 100%

Scott Benner 1:05:09
so let me ask you. So then this last bit here that I was going to ask you about is like, fear of judgment. Are you being judged, or you're afraid you're being judged and judged about what? No,

Marnie 1:05:19
I guess it was, this is sort of from when I first got diagnosed. It was, again, sort of the thing of not accepting it properly and outwardly. You could ask some of my friends, and they'd have forgotten I've got diabetes, because I just hide it. And it'd be things like, we'd sort of be sat in school cafeteria, and everyone's got the lunch. And I would, literally, sometimes I'd get my insulin pen out to do an injection, and people like, Oh, you're doing that here. Like, what? What's all that about? What are you doing? I just got into this sort of mentality of, I'll take myself off to the toilet, I'll do my insulin toilet away from everyone. And it was, sort of became a pattern then of me just like worrying that other people are going to be looking and I suppose judging me. I don't know what they'd be judging me for, but just sort of like it just felt very like all eyes were on me every time, and probably no one was looking at me. But I just had this feeling of, hey, pull in some pen out. Everyone's looking at me. Everyone's looking at the needle, everyone's whispering, everyone's wondering what I'm doing. So I did, I did have that a lot, sort of coming out of my teenage years, early 20s, where, again, I just secretly inject, had secretly decimal blood sugars. Or I would ignore it, because it didn't want people seeing me using all my equipment.

Scott Benner 1:06:42
So it was kind of self imposed. You just were Oh yeah,

Marnie 1:06:44
fully Yeah. Just a narrative in my head that yeah, I've just created. And again, I think it was just trying to feel a bit like normal. I thought of normal, right word, but just

Scott Benner 1:06:55
like everyone else, really just didn't want people looking at you.

Marnie 1:06:59
Yeah, I hate attention. I hate attention. So I was like, if one person looks at me, if that's it game over, I'm gonna be in the toilet eating my lunch, basically. But yeah, it was just Yeah, it was, it was something I had created in my head, this narrative that, oh, people are judging you, but really they weren't. They probably weren't asking questions about it and be interested in it, but I just hid it from everyone, like, hid it, didn't hide it from my friends, but just I wouldn't give too much away about it, really okay. And now you don't feel that way any longer. Oh no, I will make eye contact with someone on the bus and inject,

Scott Benner 1:07:38
like dead in the eye. It's happening. Watch me do it

Marnie 1:07:40
literally, if I see you looking I will hold the icon so you look away. Yes, I'm just, I'm not phased about stuff like that at all anymore, and I've got my Libra as well. So more than happy having that out and about. I love it when people come to me and ask me about it. I went to holidays Vegas last week, and I was literally, like, nudging my wife and like, Hey, does his next come over? There's no Omnipod over there. And I'm like, oh, and just having, like, really nice chats for people that are just what you sent to. And you'd be like, Oh, you too. And then you'd have just, like, a really nice conversation. I just, yeah, I love showing it off, basically now, like, just and then spotting, like, diabetes in the wild and going speaking to them

Scott Benner 1:08:21
I just saw in that post we talked about earlier today. Yeah, this person said I was just on a flight. I met two men, both had type one. This person has a like, a child with type one. They said that we had the best conversation, but then you came up. And I was like, Oh, I came up. Oh, finally, yeah, finally, the conversations going the way it should, but they talked for a while. They all knew the podcast like three strangers on an airplane. I was like, That's lovely. It

Marnie 1:08:49
is that sense of community, though. Because, like I said, I went to Vegas last week and I did a post in your Facebook group, just sort of being like, I've never been to America before. What should I be wary of, like, what a good snacks. I basically wanted to immerse myself in going full America. And I was like, what a really good low snacks I can go and buy loads of. And it actually made me a bit emotional, because it's just the outpouring of people being so helpful, but just wishing me to have, like, the best holiday and check out these amazing recommendations. And I ended saving loads on the phone. I just thought, how nice that people take, like, five minutes out the day to just be so helpful and want to help. And that I was like, I was just telling my boyfriend about it. I was like, it just, it just feels like such nice space where everyone's got each other's back and everyone's just so willing to help. It's a

Scott Benner 1:09:42
mass example of this experience you had with your mom. Honestly, you're just like, Oh, I understand their situation now and then you can just have more space for it. Or, you know, it's not that you're not empathetic for other people in general, but like, you just really don't know the depth of it until and. Every person that saw that thought, I know how this girl feels like she's gonna get on a plane and fly to a completely different place and she has diabetes. Yeah, it was just

Marnie 1:10:07
really nice, because everyone's just like, oh, go here. Try this. You'll have the best time. Have a great holiday. And I just thought, oh, like, just all these strangers just being so lovely. It was, it was just really, I just wore

Scott Benner 1:10:19
my heart Beautiful. All right, we're gonna stop there. I might call this episode slap bang, I don't know. Well, yeah, you should, because the bus came up a lot, by the way. Yeah,

Marnie 1:10:31
I didn't learn to drive until three years ago. That's probably why. Okay, I've been in a lot of busses in my time. Yeah.

Scott Benner 1:10:38
I mean, have you ever seen a shrunken head driving the bus, or that doesn't really happen, right?

Marnie 1:10:42
No, fortunately not, not in real life, okay, if you say so, still holding out hope, though, one day, yeah, what

Scott Benner 1:10:50
do you let me ask you before, before I let you go like you're coming here. What are you coming for? Just like, holiday or something specific.

Marnie 1:10:56
We actually came for wedding. Yeah? Holiday, Flash, wedding. Oh, nice.

Scott Benner 1:11:00
Oh, did you have a good time? Did you find us to be horrible? What was your situation? No, it's

Marnie 1:11:06
amazing. I loved it. It was it was just crazy. It felt like a bit of a fever dream Vegas, just like I couldn't quite grasp that it was real life, but it was such a good holiday. It was unreal.

Scott Benner 1:11:18
Yeah, I've never been there, but New York has that same feeling when you stand in the middle of Manhattan. Have you

Marnie 1:11:24
been to New York ever? No, no, I think that's a that's the next one when we sort of venture back over to America, yeah, open

Scott Benner 1:11:31
up your field of vision, and you're like, is this all really here? Like, who put this here? You know,

Marnie 1:11:36
there's just stuff going on all the time. I loved it. Yeah? It was so good. Good.

Scott Benner 1:11:40
Excellent. All right. Well, I appreciate this very much. Thank you for doing this with me. Can you hold on one second for me? Yeah, of course. Thank you.

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 a huge thanks to us, med for sponsoring this episode of the juice box podcast. Don't forget us, med.com/juice box. This is where we get our diabetes supplies from. You can as well. Use the link or call 888-721-1514, use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us. Med, 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. Are you starting to see patterns but you can't quite make sense of them? You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 the episode you just heard was professionally edited by wrong way. Recording, wrong way recording.com, you.

Please support the sponsors

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate

Scott Benner 2/19/25 Scott Benner 2/19/25

#1438 Pretzel

Julia, a 26-year-old with T1D, Hydrocephalus, ADHD, Autism, and OCD, discusses life, insulin management, job struggles, and her alert dog.

+ Click for EPISODE TRANSCRIPT

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

Speaker 1 0:15
Hi, I'm Julia. I'm 26 years old, and I have been type one diabetic since November of 2004

Scott Benner 0:26
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. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. Don't forget to save 40% off of your entire order at cozy Earth com, all you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com Are you an adult living with type one or the caregiver of someone who is and a US resident? If you are, I'd love it if you would go to T 1d exchange.org/juicebox and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation, T 1d exchange.org/juice, box. This episode of the juice box podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next.com/juice, box. The episode you're listening to is sponsored by us. Med, us. Med.com/juice, box, or call 888-721-1514, you can get your diabetes testing supplies the same way we do from us. Med, Hi,

Julia 2:00
I'm Julia. I'm 26 years old, and I have been type one diabetic since November of 2004 2004

Scott Benner 2:13
1424, that's 20 years so you're you were six when you were diagnosed? Yes, wow. Gosh. That feel like a long time? Or how does it feel? I

Speaker 1 2:23
don't remember, yeah, I don't remember life before I was diagnosed. Yeah,

Scott Benner 2:29
you don't have a before and after. No, do you think that's a good thing? Or do you does that make you sad? Sometimes,

Speaker 1 2:36
I guess it's a good thing. Like, I didn't feel like I had to, like, stop eating something. And I mean, pretty much now with the insulin pumps, like I eat every anything in moderation,

Scott Benner 2:47
so you don't feel restricted, I guess is the question,

Speaker 1 2:51
no, like, I know, like before I was on insulin pump, like, you know, but like the technology, like the Dexcom, like I did restrict my eating a little more, but like, you know now that I know my blood sugar, like 24/7 I'm almost a little bit like, bad about eating things sometimes, like, I'll eat things that maybe I wouldn't have eaten, like, for the sensors and stuff like, explain, tell me how I have ice cream, like every day, dessert Time at dinner after dinner. Are you telling

Scott Benner 3:22
me that because you can see your blood sugars now and you're able to manage it well, that you eat more ice cream than you would have back when you were worried, like, oh, I don't know how this is gonna go. Probably, Oh, so you're saying, okay, okay, cool, yeah, all right. Well, that's interesting. And do you think that's been detrimental to you, or do you think that's been something that's opened your life up. I

Speaker 1 3:41
mean, my a, 1c is pretty good. It's like, think it was like 6.3 before, like, last time I go to my endocrinologist next week. So

Scott Benner 3:52
do you look at your variability, like, how up and down your blood sugars are? Do you look at your time and range, stuff like that?

Speaker 1 3:58
Yeah, yeah. I've actually found that gluco app shows a better time and range for some reason than the clarity app. Is

Scott Benner 4:06
it set at a different range? Like, is the clarity app could be? Yeah,

Speaker 1 4:11
it could be because, you know, I only have it for my doctor's sake. Because, like, I guess in order to download my data, they need the gluco app and the clarity app. And, like, never even touched any of the settings. I just I do what they say. So

Scott Benner 4:26
I was gonna say the the range, like, what's the range that you think of as your goal, and what range is on those apps?

Speaker 1 4:33
Well, I'd have to go to the apps to look at them. I don't remember off the top of my head.

Scott Benner 4:37
Well, where do you like to keep your blood sugar? Where are you most comfortable with

Speaker 1 4:42
it, like 70 and like, or no, like, some 70 is too low. Like, oh, here, here, I'll tell you this. Go ahead so, and this is something I was planning to bring up later in the conversation, but I have a diabetic alert dog, right? Okay, and her alert and. Numbers. Like, we had to train her to alert at a certain number. And she alerts at what, at 90 and 190 she'll, like, start alerting, like, a half hour, even before I'm there, like, so she's like, even ahead of the Dexcom,

Scott Benner 5:13
she can feel like, sense your rises and falls. You think,

Speaker 1 5:18
yes, yeah, I'm, like, not necessarily always aware of hyper or hypoglycemia. So like, you know, people say, Oh, why do you need a Dexcom? Or why do you need a diabetic alert dog if you have a Dexcom and, like, I say, well, sometimes she's more accurate. Like, there'll be days when my Dexcom, like, is, like, failing, and it's like 100 points off in range, right? You know, yeah,

Scott Benner 5:48
now I hear you. Let's Let's go. How long have you had the dog for? Like, what made you think, like, I really should get a diabetes alert dog? So

Speaker 1 5:55
actually, it was, I read the book, and I believe you had her on the podcast, Allen coach by Stephanie Shaheen, yeah, sure. And I found that one day at my local library, and I was like, Oh, this sounds amazing. What is this all about? So I checked it out from the library, and then, like, it took a while to convince my parents. At that point I was like, 17 or 18, I had enrolled in community college just because, like, you know, I didn't really want to go live in a dorm and not have,

Scott Benner 6:26
like, felt better to it felt better to live at home and commute. Yeah, okay, yeah, yeah, yeah. So tell me when you went to them about the dog, I imagine they can be expensive. So, yeah, what was their response? Well, they

Speaker 1 6:41
were like, let's think about it for a while. A couple years later, I met somebody through one of the local JD JDRF chapters who had one of these Diabetic Alert dogs, and my mom and I went to go meet her, just like to see what it was all about and like, what the dog was like, and if it was like, a sure thing. When we came home from that meeting, my mom's like, okay, yes, you can do that. Oh,

Scott Benner 7:08
wow, cool. They were able to help you get it all set up and pay for it and stuff like that. I did a GoFundMe, did you really, yeah, oh, that's crazy. And that worked. How much did it? How much did the dog

Speaker 1 7:18
cost? Am I allowed to, like, mention this specific organization, or no. I mean, if you want to Sure, okay, as I said, it was the same organization that Stephanie Shaheen, daughter el went through, and that's cares Inc, out of Concordia, Kansas, back when I got the dog in October of 2021 they charged $5,000 I think when Elle got her dog, they charged 25 or $3,500 and now I think they charge 7500 which is still a lot cheaper than, you know, diabetic alert dogs of America, which charges like 30,000 Yeah,

Scott Benner 7:57
so that's a lot. Hey, for $30,000 you could probably pay a guy to walk around behind you and just, like, just, yeah, yeah, you know, like, look at your CGM constantly, yeah. That seems like a lot of money for a dog, right? Well, that's nice. So your parents were able to help you. And then, how old were you when you got them? Or her, I'm sorry, which? What was the dog? A boy,

Speaker 1 8:15
girl, I should have started with that. Her name is pretzel. Ah, how old? How old were? You got pretzel? I was 23 okay,

Scott Benner 8:24
all right, few years

Speaker 1 8:26
I got her, like, right? I'd say the pandemic was still going on. But, like, it was October 2021, so, so it was, wasn't like lockdown time. It was just like, you know, people being cautious and like, now, you know, as an immunocompromised person, I try to be cautious about COVID myself, like I don't want to make this political and all that, which I don't think it should be political. But, you know,

Scott Benner 8:51
just try not to get sick, if you can. Right? I actually had COVID in

Speaker 1 8:55
January of 2023, and basically all I had was, like a post nasal drip, and, like, I tested negative within like, three days.

Scott Benner 9:06
Well, I was I got, when I got COVID, I was sick for a while, and it hit me pretty hard. I was vaccinated and everything, and I just got, like, it hit me hard. So, yeah, no, nobody wants to be sick. Do you have other issues, like, other medical issues. Oh yeah, I do. You're like, Oh yeah, definitely. Hold on.

Speaker 1 9:24
This is this thing I sometimes I post anonymously in that, in the in the Juicebox group, I mentioned these other disabilities and, like, you know, like, if I say this, they're gonna know, like, oh yeah, that's that person with these conditions. So it's interesting. I was born with a neurological condition called hydrocephalus, sure, which is water on on the brain. It's a build up of cerebral spinal fluid, and I had my first of several brain surgeries at three days old. Wow. Then when I was six, is when I got to that. Diagnosed with type one, but we believe I caught that. Well, I don't want to say caught it, but inherited it from my grandfather, who was type two, and my aunt, who's type one, she would actually be considered like adult diagnosis, because I think she was 29 when she got it. In the last couple years, they've, like, they've changed the terminology about type one, just being about children and stuff. I have an anxiety disorder, which I guess a lot of people have, but, you know, mine's kind of bad and and then, more recently, I was diagnosed with ADHD and autism.

Scott Benner 10:39
Okay. Oh, wow. So and do you have any long term impacts from the hydrocephaly? There's a lot that can come with it, right? 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 if I don't respond to the email, because I don't trust myself 100% so one time I didn't respond to the email, and the phone rings the house. It's like, ring. You know how it works. And I picked it up. I was like, hello, and it was just the recording was like, US med doesn't actually sound like that, but you know what I'm saying. It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it, push this button if you want us to send it, or if you'd like to wait. I think it lets you put it off, like, a couple of weeks, or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it. Us, med.com/juice, box. Or call 888-721-1514, get your free benefits checked now and get started with us. Med, Dexcom, Omnipod, tandem freestyle, they've got all your favorites, even that new eyelet pump. Check them out now at us, med.com/juice, box. Or by calling 888721151, 887211514, there are links in the show notes of your podcast player and links at Juicebox podcast.com to us, med and to all the sponsors. The contour, next gen blood glucose meter is sponsoring this episode of The Juicebox Podcast, and it's entirely possible that it is less expensive in cash, then you're paying right now for your meter through your insurance company. That's right. If you go to my link, contour, next.com/juicebox, you're going to find links to Walmart, Amazon, Walgreens, CVS, Rite, aid, Kroger and Meyer. You could be paying more right now through your insurance for your test strips and meter, then you would pay through my link for the contour next gen and contour next test strips in cash. What am I saying? My link may be cheaper out of your pocket than you're paying right now, even with your insurance, and I don't know what meter you have right now. I can't say that, but what I can say for sure is that the contour next gen meter is accurate. It is reliable, and it is the meter that we've been using for years. Contour next.com/juice box. And if you already have a contour meter and you're buying test strips, doing so through the Juicebox Podcast link will help to support the show.

Speaker 1 13:20
Yes, I actually have a head tick. So the cat my camera's not on, but if my camera was on, you would see my tick that I do, like uncontrollably. Is it pretty constant? Yeah, but I don't. The thing is, I don't know when I'm doing it. So I recently found out that Billy Eilish has Tourette's and she has a tick. So,

Scott Benner 13:46
I mean, I don't know, obviously a ton about hydrocephaly, but I know that it could kind of impact, like motor development, trying to remember what I know, like maybe vision and hearing stuff like that, or cognitive stuff. Yes, yeah.

Speaker 1 13:59
Like, I have strabismus, which is lazy eye, and that they said was from the hydrocephalus. Okay, I don't remember if it was your group or another group. I did remember talking to another parent of a person who had type one and hydrocephalus, because I was wondering if they were connected somehow. And I think, like, two parents commented saying, Oh, my kid has both.

Scott Benner 14:24
I see, yeah, you don't meet a lot of people that have it.

Unknown Speaker 14:29
No, they're the mix. Yeah.

Scott Benner 14:30
And what about how does the autism diagnosis come as an adult or as a child?

Speaker 1 14:35
Yeah, that actually came this past spring, spring 2024 How do you get

Scott Benner 14:42
to that, like, what's going on in your life, where you end up being in a situation where somebody's trying to diagnose you, like, what was happening that made you think, like, I need help or intervention or whatever.

Speaker 1 14:52
And this is where I said I didn't want to go into all my problems, because I post anonymously on the diabetes group. Blah.

Scott Benner 15:00
You don't have to say anything. You don't want to. Don't worry. Yeah, yeah,

Speaker 1 15:03
yeah. But, like, you know, like, quite frankly, I haven't been employable. And like, you know, I was wondering, is it me, is it my other disabilities? Is it just the fact that I'm saying I always I was, was on the on job applications, saying yes, because I didn't want to lie, but then I switched to prefer not to answer. And I'm like, well, is that just as bad? So

Scott Benner 15:28
you were applying for jobs and just not getting them, and you thought, like, Is this because I'm saying I have diabetes? Is it because I'm saying like, or are they seeing something about me that I don't realize? Is that the idea, yes, okay,

Speaker 1 15:42
I haven't done unemployment yet. I'm a little hesitant too, because, like, I don't, and this is gonna go into, like, sort of semi political thing, but I don't like how they limit the amount of money in your bank account. That just seems a little weird to me. I know there's other Hold on.

Scott Benner 15:59
I don't know what you mean. Who limits money in your bank account? I forget if it's

Speaker 1 16:02
SSI or SSDI, but one of them, you have to only have, like, 2000 or $3,000 in your bank account at a time. So

Scott Benner 16:11
you're receiving some sort of public assistance, and if you make too much money, they'll take it from you. Yes,

Speaker 1 16:16
and that's why I haven't joined SSI yet, but I've been at a job since July. Again, what kind

Scott Benner 16:23
of job do you feel like you would enjoy? Well, honestly,

Speaker 1 16:26
I go on your group and I say, what kind of jobs are hiring for people with who want to help people with diabetes but do not have a college degree? Because, like, that's the other thing. On an academic level, I couldn't get a college degree because, in addition to all my other disabilities, I have something called this calcula, which is basically math dyslexia. And I went to a state school or no, so sorry. First I went to community college, and they were like, well, we can't let you graduate with an Associates unless you pass the math classes. But I was going to tutoring like four days a week and still failing. So they were like, well, Here, try this state school and you might have better luck. So I got the neuropsych eval done with the state school, because it was a state school and rather large, the Disability Services place was not very good. They forgot my name multiple times, and they also lost my paperwork multiple times. And then when I got into the talking with them about math, they were like, well, there's a chance we can let you skip math, but there's a chance not. And at that point, vocational rehab was, like, Julia, you're, you're 2425 I don't exactly remember when, how well I was, but, like, you don't have much job experience. If I were you, like, I just kind of drop out and see what, what you can get for work. Because, like, with all my things, I was not, um, you

Scott Benner 18:02
weren't having a lot of success at school. And, yeah, yeah.

Speaker 1 18:06
And I was too overwhelmed to work part time at the same time, right?

Scott Benner 18:10
Yeah, I understand. And yeah, can I ask, like, when you, when you get looked at for the somebody's going to try to make a diagnosis for you, and they come back with an autism diagnosis? Do you know what it is that they saw that led to that diagnosis, and did do you agree with it? I didn't

Speaker 1 18:26
even consider it until, like, my therapist brought it up to me this past winter. I think I was in special ed K 12. I was around autistic people, but I didn't consider myself like them, and yes, I know that Autism is a spectrum. I also should clarify that I was mostly around autistic boys and like I don't want to say anything that's inaccurate, because I was only recently diagnosed, and I'm still trying to learn more about autism, but my understanding is that boys and girls present differently, and it's much harder to both diagnose both autism and ADHD in girls and women I see than boys and men. Well,

Scott Benner 19:13
it's a lot, because now you've got to, like, learn all about this, like, this new world that you're you're being told you fit into but you're not even certain if you do,

Speaker 1 19:22
yeah, thankfully, I have discovered some people commented on one of my posts one time and said, Well, there's an ADHD and T 1d group, and there's an autism with T 1d group. So I I joined those, and they're much smaller in stature them like your group, and I barely see any posts from them on my feed. But you know, it's also good to know that they're out

Scott Benner 19:47
there. Yeah, no, of course. Like, hopefully, if you really needed something and you posted, people would say it, you know, yeah, yeah, that would be nice. What makes you want to come on the podcast? Because

Speaker 1 19:58
anything i. Discovered, like, with the experiences I've gone through, like, I want to advocate for people like myself with diabetes and with other conditions. Like, I'm not saying, like, I'm going to say things accurately. Like, that's why I don't want to talk about autism too much, because, like, again, I'm still learning about autism. But like, I want to be a voice. I want to be like a, like, not like a guiding light, but like a,

Scott Benner 20:25
I understand what you like. Yeah, you would, you would like it if you were able to share your story, in case people like you have a similar story. Is that, right? Yeah, yeah. Eventually,

Speaker 1 20:34
I'm hoping to maybe get hired by a diabetes company of some sort, I don't know doing what, but like, I'd love to work for a company that, like, highlights people with diabetes, or works with people with diabetes or even people with disabilities. Like, before, I wanted to have a career in that. But like, you know now I'm seeing like, there's so much like miscommunication and like misrepresentation about people with disabilities that, like, I think it's important. So

Scott Benner 21:03
do you see yourself like working in the building or being like a social media, like influencer for them, or what is it you're imagining? Maybe

Speaker 1 21:12
part of both, because I'm really good at social media, as a lot of people my age are, but you know, it'd be, it'd be nice to like, work with, like a, like a, like an organization, and like, be employed by them, yeah, not just like a sponsored influence or

Scott Benner 21:28
something. Do you have any idea what you'd be, what you think you'd be good at? I'm

Speaker 1 21:32
very good at writing so like writing up posts for social media, or writing up blogs like,

Scott Benner 21:39
yeah, and have you reached out to companies or to organizations? I've,

Speaker 1 21:44
I've done it a little bit, but most of them are saying, Oh, well, just look at our the jobs we're hiring. And most of them are, like, not where I'm living, or like, they need to do in the office, like, 40 hours a week, and like, you couldn't do that, right? Is that right? Yeah, I'm just trying to work 20 hours right now. Like, I need to, like, get my like together, so to speak.

Scott Benner 22:09
Sorry. What devices do you wear? You have a Dexcom. I heard you say, what else?

Speaker 1 22:13
Yes, so I have a Dexcom, and I think I'm allowed to say that I'm in the Omnipod five, limited market release, which I guess by the time this airs will hopefully be out in full market

Scott Benner 22:29
I would imagine, yeah, I would imagine it would be so. So tell me a little bit like you're in the limited market release for what, for iPhone app, or for something else for

Speaker 1 22:37
the iPhone, yes, oh, wow, which means it's not compatible with the Dexcom g7 yet, because they like for the iPhone app. Okay, I guess they're rolling that out soon, because, like, you know, I get so sick of those two hour warm ups, like, I have a good diabetes week, and then I'll do the two hour warm up. And during that two hours, not knowing what my blood sugar is like, screw it up in those two hours. Tell me

Scott Benner 23:02
what happens in the in that gap. I

Speaker 1 23:04
know what it is, like, every other hours of the week, but like, those two hours, I don't know what it is. And, like, I don't know if it's anxiety and anxiety thing or, like, does your

Scott Benner 23:14
blood sugar start to go up? Do you start eating because you're afraid you're low and and how come you? Yeah, I

Speaker 1 23:19
think a little bit of all that. Yeah, do you test? I don't test as much as I should. I know I I sound like one of those people that's like, Oh, I like, that's newly diagnosed, and they just want to use a Dexcom. And like, you know, I did the stone ages way, so to speak. I know it wasn't as stone ages as putting the needle in the spoiling water and reusing it. But like, you know, I did the multiple daily injections for years, and I did the testing multiple times a day for years. Like, as I've commented on post in the group A lot of times, I didn't get the Dexcom until I was out of high school. I think I was like 19 or 20, I went to the nurse every day, three times a day, four times a day, sometimes I was in the nurse's office more than I was in class. Now I'm just going on a tangent. No,

Scott Benner 24:10
no, I hear you. So you know, so, so you know that that two hour warm up period causes you grief, but you don't test and can you tell me why?

Unknown Speaker 24:18
Oh, you sound like my doctor. I don't know.

Scott Benner 24:21
I'm just asking, listen, you can do whatever you want. I'm just asking, like, when you know that that's a pain point for you, how come you don't prioritize the testing in there? If

Speaker 1 24:30
I felt really, really sick, like, if I was peeing a lot like, or like, nauseous, or whatever I would, I'm making myself sound like, sound like a very bad diabetic, and this is gonna need severe editing. No, you're

Scott Benner 24:44
not. No, you're listen, I think you're sharing what's happening to you, which I think probably happens to more people than you would expect. And I'm wondering if you can add insight into what stops you from just testing a couple of times. And maybe people could say, like, I mean, you say. You wanted to come on and see if and share your story like, you know, tell me, like, What stops you? Is it just, are you can I give you some examples? Are you irritated that you have to do it? Do you forget? Do you find yourself feeling combative about it, like I shouldn't have to do this? Or do, you know, even,

Speaker 1 25:18
like, I would say a bit like all the above kind of and then not to mention the fact that, you know, I had to keep track of where my meter was all the time. And now that I don't really use it, I don't keep track of it as much. And I think you could

Scott Benner 25:37
do it, Julia, I think you could, like, plan ahead and have your meter around every 10 days, don't you?

Speaker 1 25:42
I'm not liking what I'm saying here, and like I'm putting my foot in my mouth, and I

Scott Benner 25:48
think you're being honest. I just feel like you're being honest. If you're uncomfortable, you should stop, but I feel like you're being honest, yeah,

Speaker 1 25:54
yeah, no, I'm I'm Scott. What I'm doing is word vomit. Essentially, I

Scott Benner 26:00
feel like you're okay. Well, I if you're comfortable, I don't think you're doing anything wrong. You shouldn't worry about how you're what you're doing. You're just saying what you're thinking. Yeah, nothing wrong with that. Okay, well, if you like, we'll move past it. Yes, absolutely. So, okay, so you have the dog. Can I ask you, what are the like value ads, like, what are the things that you've noticed having the dog have been helpful with? And are there some things that it's been a problem for? Like, what are the goods and the bads

Speaker 1 26:29
it's been good because, like, you know, she makes me aware, because she'll start alerting to me, like, like, an hour, sometimes even before my Dexcom is going to go off and like so she'll know, like, I'm in a normal range, and she knows I'm heading either direction. I don't know which direction always, because, you know, sometimes there's that steady arrow, and she'll be alerting when there's a steady arrow and like, something's happening. So you gotta watch it. And

Scott Benner 26:58
then you look and you have, like, a 125, blood sugar, but it's not, doesn't seem to be moving in either direction at the moment. Yeah, and

Speaker 1 27:06
then, like, 30 to 60 minutes later, that alarm is going off. Isn't that incredible? It is

Scott Benner 27:13
pretty incredible. Well, listen, so then my question is, is when she alerts you, do you just wait to see what happens next? Or do you test or do something to, like, intervene.

Speaker 1 27:22
So what I do is, like, technically, I'm only supposed to, like the service dog company only, only recommended doing this. Like, if I'm if she's alerting to the numbers we set. Like, I said, 90 and 190 but since she gets so enthusiastic about like, alerting to me and like, doesn't like, basically as a panic attack, I'd say, I'll give her a treat before it's the required number to kind

Scott Benner 27:48
of calm her down. Yeah? And does that stop her from alerting? Though,

Speaker 1 27:51
not always. Oh, the other thing she does when she alerts, she pants, so like, she'll start panting all of a sudden. At first, we just thought, is this dog extremely thirsty? Is this dog like very hot, like we couldn't understand the panting. And then I talked to some people from the who had diabetic alert dogs from the same organization. They said, No, their dog does the same thing. Do you find

Scott Benner 28:14
it valuable having the dog? Or do you or is it like, more problems than value?

Speaker 1 28:21
Oh, 100% valuable. Like, I know, like, she's only four now, but like, I can't imagine living life without her. And like, you know, it's who's to say what the technology is like in 510, years. But like, I almost kind of not want to live without a diabetic alert dog now that I've had one,

Scott Benner 28:41
right? Oh, that's good. Well, that's good. So it's been a real positive experience for

Speaker 1 28:45
you. Yeah, excellent. Did I mention her name is pretzel. Pretzel.

Scott Benner 28:48
I know pretzel. I don't know if she's a girl or a boy, but I'm imagining she's a girl, because I think I hear you calling her she, yes, she is. She your only dog. Had you had a dog prior to that ever?

Speaker 1 28:59
Oh, no. And this, this is where we can talk about, like my, my life, life a little bit. So I live on a farm in rural Massachusetts, and we have 300 sheep. My parents are sheep farmers, wow. And we have one Border Collie and three Great Pyrenees, guard dogs, okay? And so pretzel has many dog friends, and she also has a lot of cat friends, because we have several cats too, indoor, outdoor cats. She so she loves other animals. Good,

Scott Benner 29:34
good. Again. You have other you have other pets and working animals too, yeah, but this

Speaker 1 29:39
is the coolest thing, and I can't believe we only just are just getting to this now, our quote, unquote, new Border Collie, which we got this past December, started alerting to my blood sugars too. With no training, she is far from like the professionally trained, like perfect in person service dog. Like, you can't you? We've taken her out in person a couple times, and she's like, you know, crazy, because she's like, I think she's just like, a year and a half now or so, how

Scott Benner 30:08
do you think she learned? My mother and I go back and forth.

Speaker 1 30:11
Her being seeing pretzel get treats, and wanting to notice that when she paused me, she gets a treat. But she's also alerted before pretzel has apparently, Border Collies are the smartest breed, or one of the smartest breeds, and we think she just has a

Scott Benner 30:31
knack for it. She just figured it out. That's pretty awesome. That's nice. Weird

Speaker 1 30:34
thing is, we've had like, four or five other border collies in my lifetime, and none of them knew how to do it,

Scott Benner 30:41
maybe seeing presel Do it somehow. Yeah, help them figure help that one figure it out. Hey, how come you don't work on the

Speaker 1 30:48
farm? Or do you I help out somewhat on the farm?

Scott Benner 30:52
Okay, but it's not a job. No, okay, no. Do you have brothers and sisters? No, I'm an only child. Okay, how about other like you said that you had a relative with type two and a relative with type one. Do you have any other autoimmune issues for yourself, personally or with your mom or your dad? Not that I know of. Okay, all right, when you post in the group and you're looking for answers, do you generally find that you get some Yes. You find it valuable. Yes, yeah.

Speaker 1 31:21
I mean that I've noticed recently, and this is nothing against you, Scott, but I've noticed recently that Facebook has changed the way things are. And if you don't put a post with your image, sorry, image with your post,

Scott Benner 31:36
you'll it ignores it a little bit. Yes, yeah, you won't

Speaker 1 31:39
be a scene. So I try to put some sort of image in my post and make it seem you

Scott Benner 31:46
ask a question, you feel like you get a good response and a conversation with people. Yes, good, yeah, that's excellent. How did you find the podcast?

Speaker 1 31:54
I actually found the Facebook group before I found the podcast, I had recently joined Facebook. Like, I was actually a late to Facebook person. I joined it like, I think when I was like, 18 or 19, like, a year or so before the pandemic, yeah, I was searching diabetes one day, and your group popped up, okay,

Scott Benner 32:19
and then you got in there, popped around, figured out it was from a podcast. And now you're Yeah, here, okay, well, that's amazing. Yeah, now I'm on the podcast too. Well, you certainly are. That's excellent. Very cool. You're using Omnipod five, right? So, yes, do you find that using, you know, like an algorithm based system, like this, has it been valuable for you? Has it made things easier, like, what's your experience with

Speaker 1 32:42
it? I think this is just how my body works. I don't think the Omnipod five keeps me in range as much as some other pumps have in the past. Specifically, like the Medtronic one, like I personally, unfortunately had a bad experience with tandem only because their their setup is little hard for people with dexterity issues like myself, that's a message to tandem to change up their system in the future for people with dexterity issues,

Scott Benner 33:12
what about the tandem pump? Did you find difficult putting

Speaker 1 33:16
the insulin in that tiny hole and then attaching that tube to the other part of the system. Okay, it was a couple years ago, so I kind of forgot, that's

Scott Benner 33:26
forgot. And then Medtronic, you said, What do you know, what system you were using with Medtronic,

Speaker 1 33:32
I was on it up to like one or two systems before they started requiring you use their own system. So

Scott Benner 33:40
they're on CGM, yes, okay, yeah, okay, yeah. And so that was just a, just a regular old in some pump it had as you set up the basal raids, it didn't, it wasn't making adjustments or anything for you. Yeah,

Speaker 1 33:51
yeah. I want to say my last Medtronic was a 630 G, but I don't remember. I

Scott Benner 33:57
see, and then you went from Medtronic to tandem, then from tandem to Omnipod.

Speaker 1 34:03
Yes, I see because I was, quite frankly, just fed up with the tubing. Like, that's another thing. Like, I'm clumsy, so I used to rip out my tubing at least once a week. And going back to my point about, like, where I mentioned, like, the type of body I have, like, I noticed that for whatever reason, my pods do not always last three days, and they'll start leaking on like day two or 2.5 okay, so I have to have my prescription written for every two days, okay? And still, I don't think it keeps me in as range as like the other ones, but I'm now trying fiasp and hoping that will faster insulin. Yeah, okay. And I know this is it's gonna sound like a sin to come on here and say this, but like, I also am bad at Pre Bolus thing, but I don't think

Scott Benner 34:56
that sounds like a sin at all. So let me ask you, like with the omnipot. Are you, I don't know. Are you thin and you have trouble finding, like, like, kind of flat spots for it? Is it like, wobbling around? Do you feel like the cannula is pulling out? Like, what do you think's happening? Yeah, yeah, exactly.

Speaker 1 35:09
Like, I'm like, 110 pounds, about and only four foot 11. So, like, they said that, like, tiny people have these issues. You would think, with all the kids on on the Omnipod, they fix these problems. But do you

Scott Benner 35:25
have do you try, like, one of the like tapes, or over patches or anything to help it from moving? Have you ever tried that? I

Speaker 1 35:31
use skin tack a lot. I felt that the tapes that worked too much like I couldn't get it off when it was time, okay, and it didn't necessarily help with the leaking. Okay. Have you ever tried your belly? Yes, but I can only put it on one side of my belly because of my surgical scars from the hydrocephalus. Oh, no kidding. And also I noticed, and I think I read someone saying this the other day on the group, that the belly is kind of a painful insertion spot,

Scott Benner 36:05
people who are very thin. Yeah, yeah. My daughter wears it there she but she pinches up. So let me ask you, how do you eat? Do you have any special way of eating? I

Speaker 1 36:17
would love to say I'm keto, and I eat low carb, and I have a perfect time and range, but that's not the truth.

Scott Benner 36:24
Why would you love to say that? Because I feel

Speaker 1 36:28
like that's kind of like, the right thing to say, like, and I know like, we shouldn't be talking about, like, there's no really right or wrong with diabetes, because, like, regardless, we're going to have this for life. So I guess, I guess that's why I say that, since I'm gonna have this for life, why don't I just eat what I want, right,

Scott Benner 36:47
right? Make sure I understand. You feel like people are listening, and you should say, I eat very low carb, and my blood sugar is super stable and, like all that stuff. But that's not how you eat. And so, yeah, but you earlier, you said that you're in the range your doctor's happy with your a 1c seems very reasonable, like, so, yeah, how did you learn how to Bolus for the foods that you do eat? Trial

Speaker 1 37:10
and error? I'm a very picky eater, so, like, that's another reason, like, why I was going to tell you I'm not very good at Pre Bolus, because sometimes I'll have a meal, and I'm not sure how much I'm gonna finish of it. Okay,

Scott Benner 37:23
okay, well, it happens to me all the time. I mean, it happens to everybody, which is why, what you'll see people do sometimes, or something I've talked about on the podcast in the past, is I always just assume there's an amount of carbs you probably always eat, right? Like, so even if you sit down with 50 carbs, or you sit down with 40, or you sit down with 80, whatever you have on your plate. Yeah, you can say to yourself, you know what? I don't know how much of this I'm gonna eat, but I don't think I've ever sat down and not eaten 15 carbs. So I'm gonna Pre Bolus the first 15, and then as I see the rest of this food's happening, I'll put in the rest of the insulin, which is kind of how the reason I think of it that way is it's how I used to do it when Arden was younger. Yeah. So does that? Does that make sense? Yeah, yeah. But anyway, what happens you eat your blood sugar shoots up. You got to bring it back down, or it comes back down on its own,

Speaker 1 38:13
yeah? And then that's the other thing that I'll say about. You know how I talk about knowing what my blood sugar is 24/7 Yeah, like when I start to see those double down or double up, I start to, like, either rage Bolus or rage eat, okay? And I don't do that all the time, but it's become a little bit of a pattern, and it's worse on some days than others, okay,

Scott Benner 38:39
yeah. Well, what happens, like, if you see the shooting up blood sugar, for example, is that, like, you're like, Oh, I didn't put in any insulin, or I didn't put in enough insulin. Yeah,

Speaker 1 38:49
I didn't put in enough. And then I don't always correct if there's a double up, depending on how long ago I corrected, like, right now I'm going double up, and I corrected at this moment. 33 Yeah,

Scott Benner 39:04
is that food or do you think you're experiencing adrenaline? It's food

Speaker 1 39:08
and also probably a little bit of adrenaline, because, you know, I was nervous to come on here and talk

Scott Benner 39:13
to you. Yeah, you said before we started recording that you were nervous. Do you still feel nervous? Now,

Speaker 1 39:18
I thought I talked a little bit too much about disabilities, my like, gripes about being disabled, so I was not very happy with that part of the conversation. But I'm also glad that I did talk about disabilities, in a sense. So let me

Scott Benner 39:35
ask you a question, would you, if you like, when, when this gets edited? Like, we could take your name out of it? Would that make you comfortable? Like in the beginning, you said, Hi, my name is Julia. But what instead, if it was like, Hi, my name's and there was a blank space where you said your name and then it went on. Would that be better for you? No, I didn't say

Speaker 1 39:51
my last name, so I think it's okay. Okay,

Scott Benner 39:56
whatever you want. You just let me know. Okay,

Speaker 1 39:59
yeah. I just as long as it's not going to prevent me from getting a job. I guess, you know, my parents are always saying, Be careful what you post online, because it sticks with you forever, and your potential employers could be watching. That's, I think that's a myth.

Scott Benner 40:13
But, well, I listen if, if someone hears you. I mean, I've only been talking to you for 45 minutes, but I would think that if someone hears you talking in here, they'd be interested in you working for them. So yeah, I'd hope so too. Yeah, I think you're doing yourself solid here. I think you're representing yourself very well. I

Speaker 1 40:30
was actually planning on talking about a little bit less about the disability. It flowed well into the conversation. I'd say

Scott Benner 40:37
I'm happy that you're happy with it, yeah. So okay, so your blood sugar might shoot up if you don't Bolus right away. Sometimes you put insulin on, sometimes you don't, but what about when it's falling very quickly? Like, does that? I mean, it must be scary, I imagine. So what do you do that makes me

Speaker 1 40:53
want to eat, like, a lot, and like, fast, and like, you know, back, like, I keep saying back, like, back in the day, like, I'm like, I'm an old person, but it was really only, like, seven or eight years ago when I graduated high school. Like, you know, they had all these rules, but, oh well, you have to prick your finger. You have to go the nurse three times a day and prick your finger, and we will not let you eat greet alone until you're 70 or below. And like, now I'm treating it like way earlier than that. So yeah, I often, like, scroll through the group and I see all these people talking about how, like, their school, like the kids, can, like, manage their diabetes on their own. They sometimes will text their parents their blood sugar without even having to go the nurse. Like, I kind of wish I had that freedom, although I do think the whole having to have a cell phone out in school thing is a little bit complicated, but with diabetes, I don't think it should be locked away either.

Scott Benner 41:55
Yeah, I understand you. Mean, hey, do you have help with your blood sugar management? Do your parents help

Speaker 1 42:00
you? Not so much anymore. If anything, pretzels might help. She She keeps me in line, I'd

Scott Benner 42:08
say. But like when you got Omnipod five, for example. Like, do your parents help you set up the settings? Or did something you did with your health care provider, or you did it

Speaker 1 42:16
yourself? No, I did it my myself. Excellent. Good for you. Yeah, I shouldn't say this either, but I've set up the last few pumps without training, and I think you're doing all right. Supposed to have training.

Scott Benner 42:29
Yeah, Julie, I love how everything you say you're like, I don't think I should be saying this, but here it is. And you know,

Speaker 1 42:35
I don't really think of myself as a person that really says controversial things. I don't, but, yeah, I guess for some reason, Scott, you're really bringing it out in me today. I don't, I don't know what it is. Maybe, maybe I just feel like you're a diabetes whisper and I can tell you all my secrets. I'm on my

Scott Benner 42:55
Oh, well, I'm happy you're comfortable. I would tell you that I don't think that having set up your own system without your doctor is controversial. I'm sure a lot of people have done that. Yeah, you know, you've had diabetes a long time, right? You know, you know what your basal looks like. You understand how to Bolus. You know what your carb ratio is. That's, you know, pretty much, pretty much it, right? Insulin sensitivity, yeah, yeah. Do you find that stuff changing throughout the month for you, or is it pretty stable?

Speaker 1 43:19
Are you talking about, like, on a hormonal level, since I'm a woman, I have Yeah, yeah, and your settings, yeah, okay, I am on birth control. I actually just take it for regulate my periods, because, like, you know, like, when I was like, 18 or 19, I was like, having really heavy periods, and I was like, sick of it, and I went to a new doctor, and I got on the birth control, the pill that, like, I pretty much got my period, period, maybe, like, once a year.

Scott Benner 43:49
Okay, well, yeah. I mean, I don't know about how that's being accomplished, but that sounds nicer. The

Speaker 1 43:55
other thing I kind of wonder is, on the days, if I was, like, supposed to get my period. Had I not been on the birth control? Are there, like, are there certain days that my blood sugar may be worse, and I wasn't very good at tracking my cycle, so I don't really know how to tell that

Scott Benner 44:13
is the variability? Pretty, like, you're not seeing like, significantly different blood sugar. No, like, insulin needs week to week, or something like that. No, no, no, so it makes it easier for you to manage things. Yeah, excellent. I will

Speaker 1 44:27
say that. I don't know if it's because of the leaking pod issue, but my carb ratios are four to seven right now. And like for me, four to seven seems like, like, extremely like, almost like a like, I don't want to go much lower than four to seven. Maybe some people are at lower, but I like, you know, so depending

Scott Benner 44:51
on the time of the day, your blood sugar, your your carb ratio is one unit covers four up to one unit covers seven. Is that? Right? Yes, that's what I mean. So you feel like, you feel like you have a little insulin resistance. Yeah,

Speaker 1 45:04
and I'm, I'm hoping that the fiasco is going to help with that. It's interesting. I've been on the Omnipod limited market release trial for, I think, just like, over a month now, maybe a month and a half. I am thought I was going to be 100% better about, like, bull sing on time, like, Bolus thing as soon as I eat. Like, just because I'm not carrying around one device or two devices, I hear you and like, now I'm like, I've only been slightly better at that, because it's like, you know, I'm like, I'm always looking for my PD. I'm like, where's my PDM, did I lose it? Oh my gosh. What happened to

Scott Benner 45:40
it? Now it's just on your phone and and it's talk about it a little bit. It's it tell me why it's difficult to Pre Bolus consistently, maybe the organizational

Speaker 1 45:49
skills, maybe the picky eating, right? Or maybe just the fact that I am still getting used to it being on my phone. That's the other thing. I have to be careful, because, like, you know, I can see why the kids who have their cell phones locked up in school, like these cell phones can be quite addicting.

Scott Benner 46:07
So you get into that phone and you start doing other stuff. Is that? What happens? Julia, yes,

Speaker 1 46:12
yeah. What are you? My father's on me about that all the time. What grabs

Scott Benner 46:17
your attention in your phone?

Speaker 1 46:18
A lot of people say, like scrolling and like, like, Instagram, yeah, different things. Basically, you don't want to say, Julia, no, maybe not. It's okay.

Scott Benner 46:29
You don't have to, yeah. But basically, the phone, you open up the phone and you you get a little, you get a little side tracked, yeah?

Speaker 1 46:35
And like, you know, I don't think it would have helped me in high school. Like, guess I would have loved to have my phone on me in high school, because, like, you know, high school is boring and stuff like that. I do think there's reasons. And like, you know, gotcha now I have to have my phone on me. 24/7 whereas before, as long as I had my PDM and I didn't, didn't leave my phone for too long. I was okay. Like, I don't want it to, like, say, signal loss for like, hours on it. And

Scott Benner 47:08
right, right, I hear you. I got you. I think most people open their phone and get distracted by something else. Like, there's a lot of lot of shiny stuff in there, and a lot of those algorithms are written to keep your attention and, you know, it's, it works, you know? So, yeah,

Speaker 1 47:24
I hear, um, yeah, you know, another thing I always talk about is, I live in rural Massachusetts, and like, we're, like, we get hit quite a bit, a bit with like snow and like rain and all that the winter. Like, I'm like, Well, what happens in a in a power outage? Like, am I not going to be able to Bolus? Like, what's going to happen? Like, thankfully we haven't, like, we haven't had that happen.

Scott Benner 47:47
Oh, you worry about, you worry about, what if power goes out for too long? What? How do I charge my phone or my devices or something? Yeah, because,

Speaker 1 47:54
not just on the reliance on technology for just like me being a young person, but now on the medical standpoint, like it's a medical device.

Scott Benner 48:06
Okay, well, listen, I would tell you here's the easy answer, in my opinion, go out to the car, plug it into the car, let the car run and and charge it there. Yeah, it's a good idea, right? I've done that before. We've had power outages since Arden's had diabetes, some kind of extensive stuff. And we did the that's exactly what we did. We were like, All right, well, I guess we're just gonna have to go charge it up in the car. And we did, you know, so that worked out really well. I thought,

Speaker 1 48:34
yeah, I also, I buy kind of over by those power bank things. I have a lot of those,

Scott Benner 48:42
yeah? So you have a little, you have a little anxiety about that, is that, right? Well,

Speaker 1 48:46
yes, Scott, we discussed this earlier, an anxiety disorder, but

Scott Benner 48:50
I'm letting people hear about it. So do you, does the disorder have a name? Technically,

Speaker 1 48:55
I think it's OCD. Ah, yeah, because that's what they that's what they said with autism diagnosis that it's like an anxiety disorder related to OCD,

Scott Benner 49:05
okay? And they think that's, that's what they think is part of the autism diagnosis. Yes, okay, yeah. And not hydro the hydrocephaly can't do that.

Speaker 1 49:16
I mean, that's what I would like to know too, but I haven't really been able to find out much information on it.

Scott Benner 49:24
I mean, I looked online for you just now. I don't, you know. I don't know how true or not true it is, obviously, but it says that obsessive compulsive disorder can potentially develop in individuals with hydrocephalus or other neurological conditions. So

Speaker 1 49:37
maybe, wow, yeah, yeah. Well, this is something I'm gonna have to talk to my neurosurgeon about, and maybe I'll have to have talked to him by the time this episode comes out, and I could write you a little note and say, This is what my neurosurgeon said.

Scott Benner 49:51
Yeah, it's just, it says, potentially, I don't know that it, I mean, doesn't mean it did or anything, or not. Yeah, I'm not, I'm not discounting the other thing. But do you have rituals? Just like counting rituals or anything like that. No,

Speaker 1 50:02
it's more the obsessive thoughts like, again, it could also be somehow related to my tic, but I went to a neurologist, and they were like, No, we don't know what to do, so you have to go somewhere else. That wasn't very helpful.

Scott Benner 50:18
We don't know what to do. Go somewhere else. It's definitely not helpful. No, oh, they

Speaker 1 50:22
were like, we can't help you, but we'd like you to have come in for another appointment.

Scott Benner 50:28
We'll take 40 more dollars, but we're pretty sure we can't help

Speaker 1 50:31
that's the other thing that's amazing about Massachusetts. I'm lucky enough to be on mass health so, like, I get my insulin and then all my prescriptions and everything for like, free. Oh, that's awesome. I'm still a proponent of insulin for all. Because how can you not be a proponent of insulin for all of like, yeah, no, I've been lucky enough to. I don't have to pay for it. Good. Well,

Scott Benner 50:55
I'm glad, I'm glad it's working out for you. So give me just one example of, like, obsessive thoughts, like, what something gets stuck in your head, like, what? What's an example of something you've been through before? Well,

Speaker 1 51:06
you know, I sent you that email last week, and you were like, Julia, please don't overthink this with all those questions about the podcast and preparing for it. And I'm like,

Scott Benner 51:16
Yeah, because I don't know you prior to like, I hope people understand, like, until you tell me I have an autism diagnosis when we're speaking, I don't know that. You know, like, I didn't know about hydrocephalus, I didn't know about that, like, so I get to learn. I get to know you while we're recording, just like everybody else does. Yeah, I see your point, though. Yeah, you were you asked a lot of questions. I'm like, you don't need to overthink this. Just show up and we'll talk

Speaker 1 51:38
and it'll all work. I'm not calling you out, Scott, I know

Scott Benner 51:42
Julie, I know. Yeah. Don't worry. You and I are getting along very well. Don't you worry. I understand you. I

Speaker 1 51:47
was just using that as the example I could think of, yeah.

Scott Benner 51:52
So, so what happens is, you start thinking about it, and then you feel like you have to do something about it,

Speaker 1 51:58
yeah? Like, kind of like, when I'm trying to figure out, like, what I'm doing with my life. Like, I email those support people, like the vocational rehab or, like, different support services. And like, I mean, I guess it's kind of hard not having a job right now. And, like, Sure, not knowing when my next job is, like, or, quite frankly, what I want to do with my life. Yeah,

Scott Benner 52:19
I was gonna say, what's the biggest concern there? Is it that you don't have a direction, or that you don't have money because your parents are helping you, I would imagine, right? Yeah,

Speaker 1 52:28
kind of, I don't have a direction, and then also kind of that I don't have a degree. Technically, I'm like, I did like, 50 credits towards a degree, but like, like, no math and no science.

Scott Benner 52:40
Does that concern you? Well,

Speaker 1 52:43
I often say to myself, like, if I'm going to have a hard time getting hired because I'm disabled, how much of a harder time am I going to have getting hired if I'm disabled and don't have a degree? Okay? And you know, Scott, I feel like I'm using you as a therapy session, which I was hoping not to but, you know, doesn't matter. We had a second meeting, you would know that this is right on character for me. Yeah.

Scott Benner 53:09
Okay, so do you have anything that we haven't talked about that we should have, or anything you feel like we've missed?

Speaker 1 53:14
Let's see be kind to people with disabilities. Obviously, this is how I'm gonna leave people like be kind to people with disabilities. Know that everybody's going through something that you don't know what they're going through. I highly recommend that if you can get a diabetic alert dog and like, don't be afraid to fundraise. Because, like, I fundraised and like, made the money. And like, it's it's not necessarily taking charity.

Scott Benner 53:40
Did you feel bad at first when you started doing it? But, or no,

Speaker 1 53:44
no, because, like, my community where I live is very generous,

Scott Benner 53:48
excellent. That's wonderful. I'm glad you found people that are very supportive, that we're willing to help you. It's lovely. Yeah, yeah, absolutely. And I'm glad that the podcast group is is helpful for you too. I I'm glad it's there for you, and you're finding value with it. Yes,

Speaker 1 54:03
and maybe by the time the stairs, I'll listen to every episode.

Scott Benner 54:06
Good luck. There's a lot of them. I don't know. I was talking to somebody the other day, and they were telling me all the stuff they know about the podcast, and I thought, I don't even know if I know all that. That's really something. So it's like,

Speaker 1 54:17
somebody who, like, re watches, like, the same show, like, over and over again. It's like, I don't know their favorite TV show. And like, knows everything about it. And like, the TV stars don't know anything about it, yeah, no, I find

Scott Benner 54:29
it. It's lovely that people like it so much that they would listen and listen again. It gets a little weird when people think, like, they think they know what I'm thinking, You know what I mean, or they make some big assumptions and stuff like that. I'm like, oh gosh, that's not like, that's not even right, but how do I explain that to you? And if I do, you're just gonna think I'm, you know. You're just gonna think I don't understand, or I'm making it up or something. So you just get, sometimes you get in these weird little loops with people where they It's very strange, like they seem very well intended, but they feel like they know things. And I'm like, oh gosh, you just. You're misunderstanding this, but there's not much I can do about that. So anyway, I really appreciate you doing this with me. Thank you so very much. Yeah, it

Speaker 1 55:07
was, it was so much fun. Oh, Scott, would it be possible if I sent you a picture of pretzel, and I don't know if you can put like,

Scott Benner 55:16
Yeah, send me a good picture. I can put it with the episode. Yeah, okay. That'd be great. That's awesome. Make it a right, a landscape, you know what I mean? Like a little wider than fall, and get it. Get a nice high res picture, send it to me. I'll put it like when I put the when I put the episode up on the website. I'll use the picture, yeah,

Speaker 1 55:33
yeah. And I'll make sure to get one with her service dog best, so everybody knows she's a service dog. Nice. And

Scott Benner 55:39
it's okay if I call the episode pretzel, that'd be perfect. Okay, maybe I'll call it a bowl of pretzels. Who knows? We'll figure it out. Oh, that'd be funny. All right, hold on one second for me. Okay, stay with me.

US med sponsored this episode of The Juicebox Podcast. Check them out at us. Med.com/juice, box, or by calling 888-721-1514, get your free benefits. Check and get started today with us. Med, 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/juice box. 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. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcast and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card if you're looking for community around type one diabetes? Check out the Juicebox Podcast, private Facebook group. Juicebox Podcast, type one diabetes. But everybody is welcome. Type one type two, gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox Podcast type one diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com, you.

Please support the sponsors

Donate

Scott Benner 2/18/25 Scott Benner 2/18/25

#1437 Hey Jessie

Jessica, juggling four kids and Hashimoto’s, explores Charlie’s T1D journey through device changes, school nurse hurdles, and gradual care handoff.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Friends, we're all back together for the next episode of The Juicebox Podcast. Welcome.

Jesse 0:14
My name is Jesse. I am a mother of a type one diabetic. She was four years old. It was the day after Halloween, and she is nine, and she's doing great. Please

Scott Benner 0:26
don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. I know this is going to sound crazy, but blue circle health is a non profit that's offering a totally free virtual type one diabetes clinical care, education and support program for adults 18 and up. You heard me right, free. No strings attached, just free. Currently, if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama or Missouri, you're eligible for blue circle health right now, but they are adding states quickly in 2025 so make sure to follow them at Blue circle health on social media and make yourself familiar with blue circle health.org. Blue circle health is free. It is without cost. There are no strings attached. I am not hiding anything from you. Blue circle, health.org, you know why they had to buy an ad. No one believes it's free. Today's episode of The Juicebox Podcast is sponsored by the ever since 365 the one year where CGM, that's one insertion a year. That's it. And here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with with the ever since now, app no limits. Ever since, friends touched by type one's walk is coming up quickly on March 8 at the Saturday at Lake Eola Park in Orlando, Florida. Go now to touched by type one to sign up and register. It's completely free. You're gonna have a wonderful time. Touched by type one.org Go to the Programs tab, click on Steps to a cure. Hello.

Jesse 2:10
My name is Jesse, and I am a mother of a type one diabetic

Scott Benner 2:15
Well, I have children who grew up with Nickelodeon and things like that. So I'm gonna say, hey Jesse, and then we're gonna move on. You know that TV show? I

Jesse 2:24
think you emailed me that one time, the first time I reached out to you, when my daughter was first diagnosed, you were like, I'm gonna respond to you, even though I get so many emails, I'm gonna respond to you because of your name. And it just hit me a certain way today. It made

Scott Benner 2:39
me think of that silly TV show on the Disney Channel? Yeah, I wonder what happened to that girl. Let's not go down that rabbit hole just now. Okay, tell me a little bit about your family.

Jesse 2:47
I have four children. My type one diabetic is number two, a four. I've got book end boy, so I got boy, girl, girl, boy. We have a ginormous 135 pound German Shepherd dog who hopefully will not bark while I'm doing this podcast. I'm

Scott Benner 3:05
sure he'll be fine. How old was your daughter when she was diagnosed? She was

Jesse 3:10
four years old. It was the day after Halloween. Oh, and how old is she now? She is nine, and she's doing great.

Scott Benner 3:19
Five years ago on All Saints Day, her

Jesse 3:22
divers three falls on the same day that my dad died. Oh, you

Scott Benner 3:28
know, yeah, I only knew it was All Saints Day because it's my father's birthday, and he was not a saint, so it stuck in my head. Oh, that's crazy. Your father died on the day my father was born.

Jesse 3:39
Yes, he did two years after Charlie was diagnosed. Oh, not long ago. Yeah. So, yeah, yeah, yeah. Feels like quite a while now.

Scott Benner 3:49
You know, I'm gonna take a weird turn and ask your question. It's only a couple years ago, but it feels like a long time ago.

Jesse 3:56
Yeah, it does. At first it felt like time was moving really slow when he died, but a lot of life happens in a short amount of time, and that's something that I'm realizing as I get older, that each year just seems to fly by, which makes the makes time. I don't know. I don't know time has been very confusing for me, because I feel like Charlie's been diagnosed. Well, it has been. It's been most of her life. You know, she doesn't even remember not being diabetic at this point. Yeah, but that's how it feels. I feel like my my dad has been gone for so long. Yeah.

Scott Benner 4:31
Do you think that's a little because your life is so busy, like, do you think if your life wasn't so fast, you'd have maybe more time to think about that?

Jesse 4:38
Yes, definitely, for sure. And I'm also a stuffer, so I just try to stuff all those feelings down and not deal with them. And life is incredibly busy with four kids. First you

Scott Benner 4:51
said, stuff her. And I thought, is that like a furry? What is she saying? Does she go to a convention? Dress to something? No, no, you don't let your feelings out. Correct? What are we? Irish, English, Catholic. What are we? I'm

Jesse 5:03
a Christian, but I just, I have a hard time dealing. I don't want to deal with the emotions of my dad's death, so I just step them down instead. You know, my husband also lost his dad a year before my dad died, he has watched, you know his memorial video countless times. You know, we can't even count. We watch it all, especially every year. We watch it on his death anniversary. I made my dad's video Memorial video, and I still have only watched it the one time.

Scott Benner 5:36
Two different theories about how to handle this. You'd think your husband's trying to keep his father's memory alive. Or, do you think he's actually, that's what he's doing? Yes, it's interesting that you don't want to talk about this, and it's the first thing I wanted to talk about. I'm sorry.

Jesse 5:51
I apologize. It's all

Scott Benner 5:53
good. You want me to pivot, or you're okay, let's, let's pivot away from my dad. Okay, yeah. I'm not gonna oddly,

Jesse 6:00
oddly, he earlier, at one point in his life, he was a type two diabetic. So that's interesting. That's a little notation, and at that point, I didn't understand truly what that that even meant. At

Scott Benner 6:13
one point in his life, did he decide to quit? Or what do you mean at one point? No, he was able to reverse type two diabetes. Did he diet and exercise his way out of the diagnosis he did. Yeah, wow, good for him. So did he ever use insulin?

Jesse 6:26
No, he never used insulin. Okay, all right.

Scott Benner 6:29
Well, I, I'm gonna tell you this last bit so that everyone can figure out that I wasn't just being morbid. But today's August 15, which I don't usually times them these, but my father in law passed away on August 3, which was my wife and I's wedding anniversary, and the day that we left on the first family vacation we took in six years, we were on an airplane when my father in law passed away, and it was terrible, and we couldn't turn back, or, you know, right, cancel a trip. We had other people with us, you know, etc. And you know, my wife's family was lovely about, you know, preparing everything. And, you know, without us there, and, you know, to help. And then we got home and had 24 hours to get ready to go to his funeral, which got scheduled by the church on my mother's birthday, who just passed away recently, and then you get on and you're like, said that. I was like, oh, maybe we're supposed to talk about this. But, yeah, we're not. We're moving on. But I don't want to talk about it. Except Jesse ain't up for this crap because of reasons that she doesn't want to talk about on a podcast, although I am going to ask you one question, and then I'm gonna leave you alone on it. Do you go to therapy? I

Jesse 7:42
do not go to therapy. But it probably would be good to unpack that. But I'm a little bit afraid of I don't really want to unpack it all. There's a lot.

Scott Benner 7:53
Jesse's like, if it ain't broke, too bad don't fix it. Yep, just leave it alone.

Jesse 7:59
Feel like I'm coping. Okay,

Scott Benner 8:01
I haven't shot anybody, Scott, I've never car jacked anyone. I don't know what you want from me. I'm doing great. Yeah, we're doing fine. You don't randomly yell at people for no reason or anything like that. Just my kids. Oh, well, they deserve it for being born now, ruining your life. So tell me a little bit about your daughter's diagnosis. How did it come on? How did you realize what was going on when you think of a CGM and all the good that it brings in your life, it's the first thing you think about. I love that I have to change it all the time. I love the warm up period every time I have to change it. I love that when I bump into a door frame, sometimes it gets ripped off. I love that the adhesive kind of gets mushy sometimes when I sweat and falls off. No, these are not the things that you love about a CGM. Today's episode of The Juicebox Podcast is sponsored by the Eversense 365 the only CGM that you only have to put on once a year, and the only CGM that won't give you any of those problems. The Eversense 365 is the only one year CGM designed to minimize the vice frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping. You can manage your diabetes instead of your CGM with the ever since 365 learn more and get started today at Eversense cgm.com/juicebox, one year one CGM so

Jesse 9:24
my I have, I'm one of five, and my brother, who's closest in age to me, he is a type one diabetic, and he was diagnosed at nine years old. And so I had known the signs and symptoms of type one diabetes. I was not unaware of them. I just remember that Charlie had just started preschool, and it was right around Halloween, and she was also in this running club, and she started drinking so much water. She was normally not a big water drinker, but she was chugging water. I'm talking refilling. Her water bottle, you know, 667, times a day, and she was going to the bathroom a lot. Charlie also was like, complaining that her legs were always hurting, and she was getting tired when she didn't need to be tired. You know, she barely did anything. And she, you know, at four years old, you have a ton of energy. Yeah, yeah. She started showing those signs. I remember it was a Sunday because I took her to this running club, and she drank so much water at this running club, and she was complaining and she did not want to run, which normally, which was abnormal for her. And took her to school the next day, and I noticed that she had, her teacher had told me that she had drank a lot of water, and then when she got home, she had refilled her water bottle a ton of times, and then she took a nap, which was also abnormal for her, yeah, and she ended up wetting the bed. And Charlie had, you know, she had potty trained herself before she was two years old. I didn't have to do anything. She just one day, took off her diaper, put it in the trash and said, I pee, pee in the potty. Now, boom, that was it.

Scott Benner 11:06
And you were like, I'm the best parent ever.

Jesse 11:09
No, I was like, wow, she is brilliant.

Scott Benner 11:13
Finally, we get a smart one, that other one, we're gonna ignore him. Now, she really just made a proclamation, yeah,

Jesse 11:19
she took her diaper off, she threw it right in the trash can, and said, I pee, pee in the potty. Now, Mama, and that was it. I didn't have to do anything. It was the easiest potty training ever, because she did it herself, and she never wet the bed ever. She just went straight into panties. Never wet the bed. So when she wet the bed during a nap in the afternoon, it was confusing. You know, it was, it was not right that. So, like I said, this started on, like a Sunday, and Halloween was on Thursday, and I remember, on Thursday we maybe went, went to the bathroom, and then I put her in her unicorn, riding a unicorn. She was a ballerina that wrote a unicorn. So I put her in this this costume, and I inflated it right after she went to the bathroom, and we went three houses up the street, and she said, I gotta go pee pee. And so I knocked on the neighbor's door. She said, Trick or treat. And then I said, Can we use your bathroom? And she went to the bathroom, and then she was complaining, I'm so thirsty. So they gave her a water bottle, and she chugged a water bottle, and we went just a few more houses. Didn't even make it to the end of our block before she said, I'm done. I'm tired. I don't want to do this anymore. Yeah. So I walked her back down. She sat in the middle of our cul de sac with her dad, who was passing out candy at like, a you know, we had a fire pit, yeah? And she sat there. She drank hot chocolate and quite a few pieces of candy, and did not look well at that point. I remember it hit me right then and there, and I shot a text message to my brother, and I said, Hey, this is what I've been noticing since Sunday. You know, all the water drinking, the wedding, the excessive bathroom, and this is what just happened right now. Tell me that my daughter that I'm crazy and my daughter's not type one diabetic. And he said, I'm gonna tell you I think your daughter's type one diabetic. And I was, oh my gosh. It was so hard,

Scott Benner 13:15
not enough Kit Kats in the world to fix that. I was like, no,

Jesse 13:18
no, no, she's not. So I tell my husband about it, and I told him, Okay, listen, I'm going to we didn't have a meter at our house or anything like that, so I wouldn't have tested or been able to test her blood sugar. I said, okay, in the morning, I'm going to take her to the doctor. And he said, Okay, you do what you think is best. And then in the morning, we were sitting together, and she seemed okay, so I said, Okay, I'm not gonna take her to the doctor. And my husband said, okay, you know what's best. You do what you think. And then 15 minutes later, I picked up the phone and I called our pediatrician, and I said, Hey, I'm gonna bring my daughter in. I think she's type one diabetic.

Scott Benner 13:55
Also, a lot of people are telling me I know best. But Can I be honest with you, I don't know what the hell I'm doing. I think my husband doesn't mean that. I think he's just trying to stay

Jesse 14:06
out of it. Yeah, mine was just like, hey, look, you're the mom. You make the decision. And sure enough, you know, 15 minutes later, my decision was, I'm going to take her to the doctor. I just can't sit on this. So took her in, tested her blood sugar, and I remember the meter said, hi. She walked back in and she said, Oh, that's weird. It says hi. It must be broken, yeah, that's what the nurse said. I

Scott Benner 14:32
thought it was saying hello to me. I thought it was saying hello to me, Jesse. I remember as clear as the bell saying to my wife, oh, my God, this is so nice. It says hello to you before it gives you the number. It's not adorable.

Jesse 14:45
Yeah, I'm like the doctor. Heard her say that, though the pediatrician was walking by our room, and he heard her say that, and he walked in, shut the door behind him, and he said, That's not what that means. Yeah, also,

Scott Benner 14:58
we're letting her. No, but that's not for this conversation, right?

Jesse 15:02
So they they were super kind, and they just said, Hey, your daughter's type one diabetic, we're gonna need you to drive straight over to the Children's Hospital, and we're gonna call ahead and let them know you're coming. And I did not say a word, Scott, I didn't say a word. I broke down in tears. I scooped my daughter up. I didn't even get a checkout sheet. I scooped her up and ran out of that doctor's office, put her in the car. First person I called as I'm driving home was my brother, and I'm crying my eyes out, and I told him what they just told me, and he's like, Hey, you gotta pull over. You're gonna get in a car accident. You are hysterical, and I'm panicking, thinking, No, she's gonna die. Like, if I don't get her to the hospital, she's gonna die. And he's like, she's not gonna die, but I need you to, you know, he's like, did you call your Did you call your husband? I'm like, No, I called you.

Scott Benner 16:04
He told me I know best.

Jesse 16:08
So I ended up. He's like, Okay, I want you to pull over. I want you to call him. I want you to tell him what's going on so he can, you know, take work the rest of the day off and drive you there, because you're nuts and

Scott Benner 16:22
so that get some real feedback from your brother. He's like, you know, the stuffing thing, that's not your only thing, so stop for a second.

Jesse 16:28
Yeah? He's like, Listen, lady, you're gonna have a bigger problem if you don't pull your car over. So yeah, that is the story of Charlie's diagnosis. She was, you know, I noticed symptoms on Sunday and Friday she was diagnosed. So it was really, really quick. She, she must have been maybe, you know, looking back and looking at her a 1c when she was diagnosed, she, she maybe had type one for a couple of weeks. Okay, yeah,

Scott Benner 16:53
hindsight, you can figure it out a little easier. Obviously, start seeing more signs that you didn't see at first. Yeah,

Jesse 16:59
yeah. She had like, a cold prior to that as well. It's pretty

Scott Benner 17:03
well done on your part. I don't, I don't like, it's not nearly the worst one I've ever heard.

Jesse 17:07
Yeah. I mean, when we, when I did get her to the hospital, and they did, you know, they have meters that don't say hello to you. So her blood sugar was 568,

Scott Benner 17:15
okay, how long did they keep you or did they not? Two

Jesse 17:20
days, two days, two days, and we had to attend some classes. Could go home, and they gave us a bag of stuff and, like, two insulin pens, and said, best of luck to you the night I was the first night that I was in the hospital with her, because we had, you know, we had another kid at that time. So my husband went home, and I stayed with her. So I remember just I, I came across your Facebook page. Okay, I just started typing in Facebook in the search. I just started typing in things. And then I was in a, you know, different diabetes things, Georgia, diabetes groups, things like that, one person had mentioned on their Juicebox Podcast, and so boom, I found it right away. My brother was super sweet. He overnighted a Dexcom, okay, transmitter and a and a g6 to us so that when we were released, we had one, because I had asked the endocrinologist for one, and he said, now he wouldn't give me one. How come did he say? Why he did not? He just said they want us to get familiar with accurate readings. And I thought, This guy is absolutely nuts. And that was the beginning. Start of me, I don't trust these doctors to make decisions anymore. As soon as he told me, No, my brother overnighted us one. And then I just went, I realized, hey, I can log on to their website and request a Dexcom and that's what I did. And then they contacted me. Dexcom contacted me. I gave them my insurance information, and then I was able to they needed a prescription, obviously, and I switched who I wanted the endocrinologist to be.

Scott Benner 19:04
That was that nice and easy, and that was it. Can I have a Dexcom? Please? No. I'm gonna start advocating for people to say, douche bag. Says, What after that? Yeah, yeah, I

Jesse 19:13
know. And that's when I realized that this is what this is. This is the ball game that they want to play. They they just, I don't know why they would say no, but I realized I've got to take this into my own hands. Why would they not want us to be able to have a Dexcom that gives us so much information and just peace of mind? As a parent with a with a child, you know?

Scott Benner 19:33
I mean, I guess you can go round and round on this point, and I have and I could do it again, but I get both sides of the argument, like, hey, just, you know, do it with the meter at first, so you can figure it out, you know? But I don't know what it is you figure out, because I look back on my own life, and I couldn't figure out anything with just a meter. It wasn't until I got a CGM that I was like, Oh, I see patterns and cause and effect and oh my gosh. Like, I. Make changes. Like, you know, like, that kind of thing. So, like, is it just an old thing? People say, Yeah, you know what I mean. Like, like, is it leftover from When insulin pumps came? And people, I

Jesse 20:12
really, really do feel like it depends on what dark so, like, for example, that endocrinologist that told me No. Was an older endocrinologist. He he's not, you know, up with the technology and probably didn't trust it, right? That's why He said No, and that's what I found, even when I switched endocrinology offices altogether, the first endocrinologist that I saw at this new office, I asked him for a pump right away, and he said, No. He said, I want her to be diagnosed for at least a year. I want you to get familiar with giving injections for a year. And I thought, Why? Why would you put her through that for a year? If there's

Scott Benner 20:54
two ideas I have, if one is, I'm an old guy and I don't know how to use this newfangled thing, and if you're using it, you're going to ask me about it, then what am I going to say? Yeah, you know, I'll get exposed or really, maybe they really do feel like, well, what are you going to do if a pump, you know, if you can't, if your pump breaks, or whatever? And I mean, my answer to that, and I understand that, I don't disagree that you should understand how to manually take care of your diabetes. I'm not minimizing that at all, but a year, where'd you come up with a year? What if I get it figured out in six weeks?

Jesse 21:25
I switched. I was like, All right, I'm done with this guy. So, um, switched to a different endo in that office, and she was much younger, and she and I said, we want to get on an insulin pump. And this was, you know, we had been, she had been Charlie, had been diagnosed. I mean, maybe three, three months at that point, and her a 1c was already 6.0 so she was like, I feel like you've got the hang of this, and I feel like we could get you on an insulin

Scott Benner 21:53
pump, right? I mean, that's, I think that's the bigger point. Is like, stop lumping me in with everyone else. Like, maybe I will figure it out quicker. You know, just because maybe your average is a year or and by the way, it's not even some people will never figure it out. They just eventually go, Oh, you're not figuring it out. I'll give you a pump and see if this helps,

Jesse 22:10
right? And I, and I remember just being like, I'm giving this little girl 14 plus injections a day because I wanted her in such a tight range, right? Yeah. So I was like, I'm I'm trying to dial this in here, and I'm having to give her all these injections. Why not just give her a pump where I can do these small increments to get her where she needs to be?

Scott Benner 22:33
No, I mean, I agree. I would want if, knowing what I know now, I would leave with a with a pump and a CGM, yes right away. Yeah, even knowing that if I put myself in that position, I wouldn't completely understand what I was doing, I would still rather start there. That's my opinion. So, yeah, you know, it's funny why you're talking about this. I have this note that somebody sent me recently, rattling around in my head. It was very well intended and kind. And the person said, you know, there was somebody on a recent episode, they really gave it hard to their doctor's office. And I think this person works in medicine, and people are trying, and I'm like, well, you're trying, and that's why it strikes you that way. You don't know that the people they're dealing with are trying. But at the same time, I It's so funny. If you ask me, Do you think your podcast beats up on the medical community, I'd say absolutely not. Like, I just think where people are telling their stories, and if that's what their story is, then you know what I mean? Like, that's not beating up on something, it's reporting what happened to them. So, right, right? It's not my fault that so many people have that story. You know,

Jesse 23:32
correct? Yeah. And I feel like that's the norm. A lot of people have the same story, and it's unfortunate. I do agree

Scott Benner 23:41
that people don't jump on podcasts to say positive stuff all the time. Like, you know, I mean, like, you don't jump up on Facebook to say, Oh, well, everything's going

Jesse 23:48
yeah, I will say, I love our endocrinologist. Now she's, she's phenomenal, yeah. And my biggest thing with her is she, she trusts me to manage, and takes everything I say to heart. And so we work more as a team. Yeah? Instead of feeling like we're working against each

Scott Benner 24:05
other, gotta be like that. It's really the only way it works well, so and type one

Jesse 24:10
is so personal, you know? Yeah, so the way that I manage my daughter's type one diabetes is not going to be the same as another child. It looks differently. I

Scott Benner 24:21
remember when I put the Pro Tip series out originally, and I got this note from somebody that says, like, you know, everybody doesn't do what you do. And I was like, Oh, I didn't think everybody did. Yeah, that's not why I put it up. Yeah. I thought, Oh, gosh. Like, do you think I'm saying to you, this is the exact way to do this? I was like, This is what I'm doing. Here's my outcomes. Take some of it, all of it, or none of it. I don't care. See what works for you. Yeah, yeah. I hope some of it helps you. And if it does great, and if it doesn't like I mean, I'm not coming to your house like, you know what I mean,

Jesse 24:54
right? I mean, we should all be learning from each other. I mean, I just spoke with one of my friends this morning, whose son is. Is type one, and you know, she Oh, wait, no, that was yesterday when I tried to hop on your podcast yesterday. Oh, we're definitely

Scott Benner 25:06
going to talk about that. Jesse, at some point,

Jesse 25:10
I was late to it, because I was actually trying to help my my girlfriend out. Her son had ketones, and I was just trying to walk her through some steps, you know? Yeah, so I was dealing with diabetes, and then I thought that I missed my appointment. You

Scott Benner 25:25
want to do this now? I had a 9am recording yesterday, and then I had an 11am recording so in between, I ate two eggs in a wrap, and I was getting up to my computer. Like, I was excited. I was, like, a couple of minutes early for my 11am like, Look at me. Go and I open up my email to look at that before I jump on and there is a person, like, frantically emailing me. It felt like like I've been on this call for 25 minutes. I don't know what's wrong or where you are, and I'm looking at the name, and it's not the name of the person who I'm recording with at 11 o'clock. I don't understand what's happening. And you know, I opened up the application to talk to the person 11, because I got to be honest with you, I was just going to respond back to your email and say, I don't know what you're talking about, but, and I jump on and then there's two people coming into the Zoom, and I'm like, the hell's happening, and I let you both in. And because a handful of times in my life, I'll set up a recording with someone, and by the way, no one do this to me because I really don't like it. You'll say, like, oh, I want to come on and talk about this. And then you'll surprise me with a third person. And you're like, I brought my mom on. I thought she'd be interesting. And I'm like, that doesn't sound as good. I know I got to split up the conversation between two people. Like, I would have preferred to know about this before I was going to do it, but people will spring it on me sometimes. But the person I recorded with yesterday at 11, Sam, like, I know her. Like, I know her, know her, like she works for touch by type one, or volunteers for touch by type one, and I've known her for like, a decade. I'm like, she would not do that to me, but I thought, well, maybe she did so like, I'm like, okay, hey, Jessica, what's up and and I'm like, trying to figure out. I'm like, Sam, do you know Jessica? And she goes, No, I have no idea who this is. And I was like, oh. I'm like, wait a minute, Jessica, who the hell are you? And then we looked and realized you were 24 hours early for your recording. Yeah, yeah, yeah.

Jesse 27:19
And I thought I would, and I thought I was late, so I actually did well. I crowded myself.

Scott Benner 27:24
And then this morning, by the way, you were like, two minutes late, and I thought, Oh, she's getting back at me.

Jesse 27:31
I told you, life is so crazy. There's too many people schedules to manage. And then at the same time, I'm trying to manage, you know, diabetes, just like, Yeah, I'm trying to manage diabetes. I'm helping other people with their diabetes, and

Scott Benner 27:43
trying to get that German Shepherd not to kill you. I think sounds like it's huge. Oh, he's

Jesse 27:47
the he is a sweet boy, but yeah, if you were coming to my door, you'd think, I'm glad there's a door between

Scott Benner 27:53
that. So in your notes to me about coming on, I love you. Have two topics in here. I love both of them. I want to go through both of them, yeah, trying to strike a balance between keeping your daughter's care good, giving her some autonomy, but not overwhelming her. I think this is after you learn about how insulin works and how all these gadgets work, and what the hell the smokey effect is. And once you've got all that down, I feel like this ends up being the long time goal. I almost said burden, but I don't mean burden, like burn, but like, responsibility of a person raising a small child with type one, like, I want her to be healthy now. I want them to understand this. I don't want to overwhelm them. Can you talk about that with me,

Jesse 28:41
yeah. So actually, that's been my goal with her from the beginning of her diagnosis. It was, you know, I want to, I want her to understand everything, right? But as a child, there's only so much you can take on, and I don't want her to to bear the weight of type one diabetes herself. I want her to understand, like I'm always going to be there. But ultimately, I am raising, I'm raising a person who's going to be an adult with type one diabetes, right? So when she becomes a certain age, she's going to have to fly the nest, right? And so she's going to have to understand, okay, what do I do here? My mom is not doing it for me. I don't. I don't ever want her to, so I'm trying to give her bits and pieces as we go. And my biggest thing is what is too much for her, because everyone always tells me, your daughter is so responsible. She manages her type one diabetes so well. And I'm like, okay, that's me, but

Scott Benner 29:49
she's nine. But okay,

Jesse 29:52
she's nine, but I am so I've been giving her bits and pieces last. Her was her very first year at school managing her diabetes without the nurse. I was done with the nurse. Love them. And I'm not coming on to hate on our nurse, but there's only so much that they can do, because there's protocols in place to protect their jobs. That's

Scott Benner 30:18
how I'm gonna stop you that love them sounded very southern and reminiscent of, Oh, bless your

Jesse 30:24
heart. I am in the South.

Scott Benner 30:27
Just I heard a lot in those two words, but go ahead, I

Jesse 30:29
do. I did love my nurse, but we got in fights probably three times, three maybe three to four times a week, three

Scott Benner 30:38
times a week. I thought you're gonna say three times. I have something stuck in my head because it came up online the other day, and it's your it's your secondary thing. But you kind of like you. You're blending the two ideas together. So I don't feel weird blending them together. I am fascinated when a nurse reaches out to a healthcare team without your Okay, and starts talking to the doctor about your kids medical stuff.

Jesse 31:04
Oh, I've heard of that happening. Yeah,

Scott Benner 31:07
yeah. I happened to me once. I happened to my daughter once. I did not react well to it. Like, for all my like, become, don't do stuff, you know. Like, I called the nurse's office and I was like, did you call my daughter's endocrinologist? And she goes, Yeah. And she started talking. I went, do not ever fucking do that again. And she goes, what? And I was like, What the fuck do you think you're doing? I was like, You're calling my kids doctor. Who are you? You're not me, you're not my wife, you're not my kid, you're a stranger. You're a lady who has a job at the high school. You don't have anything to do with my daughter. I I said, Jesse, I want to be clear. I think I said at her about four times in a 32nd call. And when I was done talking and she started talking, I said, I don't give a shit what you're gonna say. I'm done now. Don't do that again. And I hung up the phone, like, so it put me I was like, What in God's name, do you think you're doing? Like, really, I handle it very poorly. I want to be clear about that. First, there

Jesse 32:03
was somebody on one of your podcasts recently who shared, I feel like that you interviewed that had a similar situation. Yeah, it happens a lot. You know, I specifically put in our medical management plan certain things so that that couldn't happen because I was tired of the nurse telling me, oh, you can't make these changes in her pump, like changing her car ratio, right, or changing her basal rate for a certain time of day, like when she was at school, the nurse would tell me, oh, you can't do that because your your DM, MP, says that you can only change it by this much, and you're trying to change it by over that amount. And I was like, I can do what I want. I was always telling her that I can do whatever I want. This is my daughter,

Scott Benner 32:46
right? I don't usually say stuff like this, Jesse, but America and all, you know what I mean, like, I'm free here. Like, if I'm not hurting that kid, there's literally nothing anybody can say about how you're doing what you're doing with your child, right? We certainly were, by the way. I later, as I calmed down and went back and spoke to her, I don't even she, was trying to find out something that it wasn't even about. I was like, I'm like, I don't understand why you think this is okay. But it wasn't even anything like that. Like, you're trying to move her insulin to carb ratio to one to 15 or something, and the orders say it's one to 20, like that, like that kind of thing. It wasn't even that. Are you telling me that the school nurse for your daughter had so many opinions about how to manage her insulin and did not want or are you just telling me she didn't think you had the autonomy to make changes after it was written down both,

Jesse 33:37
both so she didn't want me to make any changes without updating, having an updated diabetic management plan. So if I wanted to change her car ratio or her basal rate for a certain time of day, because I was like, All right, so this, you know, whatever day this is, it's just not working anymore, right? She needs more insulin. That's it. Is what it is for snack time she she can't be a one to 10 anymore. She's got to go down to one to six, whatever it may be, yeah? She would say, well, we're, you can't do that unless you have the doctor fill out and sign a new diabetic medical management plan. I'm like, I'm going to do whatever I want.

Scott Benner 34:16
Yeah, also, you're, you got a little kid growing, changing all the time. Like, you know, these things are going to change, if you understand, insulin, these things are going to change frequently, if not daily. Sometimes I gotta call the doctor every time, right? Or did you just hit her with leave like, mind your business.

Jesse 34:35
No, I told her. I tried to come at it from like, a knowledgeable perspective and explain that to her, and she's like, well, I could lose my job. So I ended up going to our endo and just telling them, this is what I need you to specify on here. And she just checked a box on there that said, I think she added in an extra box because it wasn't there. She added in an extra box that said that the parent guard. In can make whatever changes she wants to. Yeah,

Scott Benner 35:02
that's the magic sentence in a 504 plan. Everyone should know that and have it in theirs. Here are all the rules, here are all the numbers, but here's the sentence for you, so the nurse doesn't feel like she's gonna get in trouble, which, you know, I can obviously understand, yeah, from the nurse position, but, but it's also in the middle of the day when you have three other kids and you're married and you're trying to, like, you know, do whatever else you're doing, and, you know, you don't need somebody stopping you every five seconds saying you can't do that, because that's all you hear. Right? What she should have said was, I understand that this is a good idea, or you think it's a good idea, but if I do that, I'm going against these written orders. We need to change these written orders so that I have more autonomy to listen to you. And then, yeah, all done. You know,

Jesse 35:44
I would get so angry. I was up at the school multiple times a week because my daughter would always come home and be like, I got in trouble because I gave myself insulin. Because I would text my daughter and say, you know, let's say you're like, she was like, 220 and I'm like, You're high. You need insulin. So I text her, and I tell her to dose, and she gives herself insulin, and then she goes to the clinic at some point, and the nurse sees that there's insulin on board and that it was dosed, you know, from her pump. And then she yells at my daughter for doing that. And I'm like,

Scott Benner 36:15
really yells at her, like, raises her voice, or just chastises her. What are we talking about? The way

Jesse 36:20
that my daughter explained it to me was that she would, she would yell at her. She would say, you cannot do that in an elevated voice. And you know, my daughter would say, my mom told me to and she said, Well, you have to listen to me at school. And then my daughter would get home, and I'd say, You don't listen to that lady. You listen to

Scott Benner 36:37
me. Hello, random lady who works at my school,

Jesse 36:42
but we have, can you

Scott Benner 36:44
imagine, in any scenario, I send my kids somewhere, my nine year old somewhere, and a person feels comfortable telling them, don't listen to your parents.

Jesse 36:53
Yeah, I know I had a big, big issue with it, so that's why last year, we actually got a new nurse after that, and she was super kind. We ended up loving her, but that's beside the point. But last year, I said, going into her school year, this was her third grade school year, I said to her Endo, hey, we're going to be done with the nurse situation, and we're just going to manage ourselves. And she said, Okay, you said, if you think that she's ready, then I think that she's ready. And I said, Okay, great. So we changed everything on her management plan to be all like char, that Charlie could do it all herself. She rocked third grade doing that. She just wore an Apple Watch and kept her phone in her backpack. And every time I would text her, she would just do what I said so she could dose when her blood sugar was high, if she was low, she was just staying in her classroom and drinking juice or having some fruit snacks at her desk,

Scott Benner 37:51
just what everyone else does who has diabetes. Yeah, yeah, but

Jesse 37:55
they wouldn't even let her treat in the classroom before, even though her plan said it, her nurse was just like, I'm still not comfortable with it when she was in second grade. And I'm like, I guess you don't understand. Like, we've been doing this for so long that she knows, yeah, when I tell her, Hey, your blood sugar is low, drink six, six sips of a juice box, that chick is going to drink six sips of a juice box. I guess she just had a hard time. And I and I get it. We're at a new school this year, actually, and her nurses are freaking out because my daughter has so much independence. They said they've never had a type one with so much independence. So her blood sugar was low yesterday after recess, because I just figured out yesterday she has snack and then goes straight out to recess. Okay, so a new school year, right? Yeah, yeah. I'm like, oh, okay, all right, so now we know that, so we're not going to be dosing accordingly, you know, we're going to change our dosing strategy to accommodate for activity outside, right? Whereas my daughter was like, oh, okay, I'm going to eat this protein bar and I'm going to dose for it, and then I'm going to go outside and 52 double arrows down was about 15 minutes later. So they called me freaking out yesterday. The nurse and I had already talked to Charlie, and she had, you know, told me, I'm I already drank half a juice box. I'm good. I'm I'm chilling inside now. But they called me and they're like, Hey, we're kind of freaking out here. We saw that her blood sugar was dropping. We just need to know, is she okay? We're gonna go see her. And I'm like, she's fine. She's already treated. And then about 10 minutes later, they text me. They're like, we're sitting with her. She looks great. I'm like,

Scott Benner 39:27
well, see now that. I think that's nice. I think that's great. Yeah, I

Jesse 39:31
had no problem with it, of course, but it was just a completely different situation this year. They're like, Hey, she has too much independence. We're not comfortable. We just want to put eyes on her. I'm like, she's okay. She'd tell me if she wasn't okay,

Scott Benner 39:44
go stare at her. That's fine, waste your time, yeah, but no. I mean, I like that 52 double hours down. I like the nurse going and looking for the kid. Nothing wrong with that. Yeah,

Jesse 39:51
no problem. But I said, Hey, would it make you all feel better if I just shot you a text message and said, I've talked to her. She's treated you know? Yeah, I'm sure it would Yes, please, please keep us in the loop. You're gonna

Scott Benner 40:03
end up building a nice relationship with them and and that's gonna be good, yeah, for sure. So tell me something about it's weird for me sometimes when I like, I know you listen to the podcast, right? So when I hear you say something and I go, Oh, I really like that idea. I don't know if it's a thought you heard from me and you're putting into practice, or if it's something you came up with, you're on your own. And as the podcast grows, I should start asking that more often, people are gonna think I'm asking to, like, get credit, but I don't. I don't mean for that. So this idea of, like, the the slow matriculation of knowledge and responsibility that I'm I'm a lot about that. I, by the way, I just think that's a good parenting skill, not necessarily a diabetes thing. Over the years, I've taken a lot of crap from older type ones. You know, when Arden was much, much younger, they'd be like, Oh, well, you do everything and she doesn't understand it. And I'm like, no, no, she understands what we're doing. I'm just not like piling it on her. Also, I just interviewed a 36 year old lady last week who sounds like she's imploding from the inside of her brain, because, you know, when she was eight years old, her parents were like, it's your disease. Take care of it and abandon her, basically. And now, as an adult, she's still struggling. And just told me a horrible story about she didn't pay attention to her blood sugar all through college. And like, you know, but, and I'm like, so, you know, it's like everything else. I think they went through something one way. They hear someone else doing it differently, and they go, Wait, do you see that's not gonna work? And it worked exceedingly well for me. But is that where you got the idea, or is it just common sense to you?

Jesse 41:36
No, I'd say it really came from seeing what happened to my brother. My brother was diagnosed at nine years he was nine years old. It was on his ninth birthday that he was diagnosed. My parents didn't teach him anything. My mom, okay. My mom, as far as diabetes goes, Bill this one's gonna die. My mom, there was so much responsibility put on him at nine years old, that it carried such a weight on him, and it has, it has really, really caused a lot of problems for him. It's a heavy weight for a kid to carry, and I can't imagine put, you know, having my daughter who, who is type one, having her carry that burden herself, and so seeing the damage that it did to my brother with all my mom did was really, she would pick up his prescription, she would drive him to his endocrinology appointments. But my brother didn't have a CGM back then. He had, you know, a little a book, and he would just have to record his blood sugars. He'd test on a meter and write it down, right? And he he did get a pump. He went through a few pumps, because he was a boy, so he broke a lot of pumps. I remember my mom really giving that responsibility to him. I really vividly remember him giving his own injections, yeah, and that was with like a syringe, not a pen, like the glass ones, yeah. And I'm like, Oh my goodness. So I saw the mental toll that it took on my brother, and with that, I've been like, okay, all right, how do I give her little chunks here and there to help her, you know, have autonomy over her type one diabetes, to understand how insulin works, to understand how her body is working, and be able to manage it as she gets older, but also not overload Her so then she's like, stuck and needs therapy, right? Great,

Scott Benner 43:23
perfect. And you're doing that, and what are you finding to be the the key to this? I feel

Jesse 43:29
like we have, like, a goal ever, or at least me, I have a goal every year of like, okay, I'm going to give her a little bit more independence here, right? So this year, last year, for example, it was we're going to ditch the nurse at school, okay? And we're going to manage together. I will tell you what to do, but you have the freedom to hey, if it pops up on your watch and says low blood glucose, you know what to do, right? You know to treat it. And just shoot me a text and say, I treated my blood sugar, and she did that this year, it's okay. I want you to start calculating your carbs or making educated guesses. You know, if you don't have the you know, if you're eating something and it doesn't have a package with carbs on it, okay, let's make an educated guess. You've been diabetic for long enough now that you should be able to look at a plate of food and be like that. Looks about 40 carbs. That looks about 25 carbs, because, you know, and I've been trying to teach her, I taught her what a Rolodex was recently, okay? I said, That's what your brain is becoming. So you need to allow your brain to become a Rolodex, right? So, just, you're adding to it all the time. So, you know, a large apple is going to be about 25 to 27 carbs. Okay, great. You know that? Plug that in? It stays in the Rolodex of your brain. You know how to dose for a banana? Because you eat bananas all these things, right? So I'm like this year, her goal is being able to look at a plate of food and be able to make an educated guess about how many carbs are on that plate. Dose for it, see how it goes. So.

Scott Benner 44:59
Nice. Do you guys practice over the summertime? Yes, all

Jesse 45:03
the time. And actually, I just switched her. She's, she's going to a hybrid school now, so she's only in school two days a week, and she's homeschooling three days a week. So that gives us even more time to to work on that. That's awesome. Good for you. You know I want Oh, and another thing, actually, she added this one on this year. Was changing her Dexcom herself. Okay? She wanted to be able to change that herself and put one on and she has put her last two Dexcom on herself. Because normally I do that for her, and she's on the T slim, so I fill her cartridges and all that. And for the last three years, she's been watching me do it, and, you know, we try to create fun videos. And like, you know, she's in that she's that age range who they love, like Tik Tok and all that stuff. Yeah, she doesn't have a tick tock, but she will make videos on her phone of herself doing stuff, oh my God, and save them for herself.

Scott Benner 45:58
Jesse, anybody who thinks that's crazy, if you look at Arden's iCloud folder from like her lifetime, it is just them making videos from the time they were little with their friends. Oh

Jesse 46:08
yeah, I did the same thing as a kid. I just wasn't doing them about type one diabetes. But you had a cell phone when you were a kid. I had a cell phone at 11 years old. How old are you? What year is it? 24 I'm 34 Oh,

Scott Benner 46:22
look at you. You're so much younger than me. It's amazing. I just did, yeah, no. I mean, seriously, I was like, you have it's the four kids thing that threw me off.

Jesse 46:30
It's the four kids. Yeah, no, I've got four kids, and I'm 34 and I definitely don't feel 34 I'll tell you that

Scott Benner 46:37
you feel older. Yes, how old were you when you had your first 24 can do basic math? You're like, I could do math before I got pregnant four times. Yeah,

Jesse 46:47
I was 23 I was 23 when he was born. I had just turned 23 and then two weeks later he was born. Wow. How old were you got married 21 Yeah. He's Yeah, yeah. I was a baby. So now I look at 21 year olds, and I'm like, You guys probably should,

Scott Benner 47:04
don't use that. Yeah, how did your husband trick you into that? Do you remember? He

Jesse 47:08
says that I tricked him? Oh, that's also

Scott Benner 47:09
possible.

Jesse 47:11
He Yeah, he says I tricked him that I I acted like I was gonna be No, I'm just kidding. I'm just joking. I'm not gonna go there. No, he does say that I tricked him into marrying me, but that's it. That's got to be a joke, because the same age, he's the one who pre Yeah, he's one year old. We have the same birthday, he's one year older. Oh,

Scott Benner 47:31
wow, look, even a person your own age, that's crazy, yeah,

Jesse 47:35
but he's the one who proposed to me, so I'm not the one who asked

Scott Benner 47:38
him. He's the one who proposed to you after, after you said, I'm leaving. And he was like, Wait, where's this girl going? No, he actually,

Jesse 47:45
you know, funny story is, we only dated for four months before he proposed. How

Scott Benner 47:50
long were you engaged? Five months. Oh, wow. Super quick. You were married in under a year of knowing each other at 22 and 21 yes, yes. And you're still married.

Jesse 48:03
We're still married. Yeah, we're about to celebrate 13 years. Interesting for you look at that, yeah, and we have four kids,

Scott Benner 48:10
yeah? Well, I mean, now no one's going anywhere, nobody can afford to live, yeah? I mean, really, yeah, that's ridiculous. Even if you wanted to, you'd be like, I don't know how to accomplish this.

Jesse 48:20
I know. And, yeah, you know, it's been a it's been crazy, because he didn't know anything about type one diabetes at all. And then our, our daughter was diagnosed, and he does, you know, we've had some hard times, and you know where we have, you know, I felt like I carry more of the burden. I say burden, but it is a burden. I'm not gonna lie, it's a burden. Um, type one diabetes is not like a cake walk, sure, but now I feel like we have a good system going. Now that you know, you've been married for a long time, right? I think

Scott Benner 48:51
my 28th anniversary was the other day, was it?

Jesse 48:56
Yeah. So, you know, like you got to communicate to make this thing work. And so I remember at one point just being like, Hey, listen, I'm do I feel like I'm doing all of this and I need help, because I can't carry the weight of it myself, and I need help. So, yeah, we share duties of, you know, like changing her her sites or and stuff like that. And he's got a calendar in his phone now, of to make sure that we change it, you know, just like a reminder that pops up every 48 hours to change it, yeah, and all that. So we share it very well now, but I would say since so I stay home with the kids, and you know, he's got a full time job, so during the day, when he's working, it's me, like I'm managing her type one all day long, she's gonna come to me first before she would ever go to him, Okay?

Scott Benner 49:42
And do you find that he's learning about it in a meaningful way? Or I had

Jesse 49:48
him at the beginning, I was like, hey, I need you to listen to this podcast. I need you to understand, you know, because I was trying to implement all these new things, yeah, and that I learned from your podcast. And I'm like, it's gonna wake make. Way more sense if you just listen to this podcast and you you hear what they're talking about, you know, like the Pro Tip series. I had him go through the Pro Tip series, yeah? And even just defining diabetes, you know, because I'm like, you know, we need to be on the same page so we can manage this

Scott Benner 50:14
together. I can't be saying words you don't understand. Yeah, I've even left

Jesse 50:18
him and gone out of town, and he's got it. Oh, I

Scott Benner 50:21
look at this. He's trainable. This is lovely. He's great. Tell me, how did he react when you said, I need you to listen to a podcast. He

Jesse 50:29
just said, Okay, can you put it on my phone? That was it? Jesse, I'm

Scott Benner 50:33
gonna say something. That's gonna sound weird here, but hopefully it won't. You were on video for five minutes when we first started. So I now know what you look like, you're pretty you could probably get boys to do what you want. I would have trouble. I tell my wife to do something, she looks at me. She goes, I don't think I'm doing that. She doesn't look at me and go, Oh, I don't want him to leave. So I guess I'm gonna accomplish something. You're working at an unfair advantage, is what I'm saying. Oh, please. Because in my mind, you say, Go listen to a podcast. And he walks out in the garage and, like, just screams into a towel. It's like, oh my god, I can't believe I have to do this.

Jesse 51:08
You know, he cares about her. And so he was like, All right, I got to learn. He's always looking to learn and grow, too. So he's like, all right, if this is what you think will help. And sure enough, it does. And you know, what's been very difficult is getting my brother to listen to the podcast.

Scott Benner 51:22
That's tougher. The he's had diabetes a long time, 27 years. No, okay, I can do basic math. You said he was 36 right? He's 36 Yeah, diagnosed when he was nine. Yeah, okay, yeah, that's excellent. I remembered all that, which I'm super impressed by. Oh yeah.

Jesse 51:39
Okay, so I did do the math, right? Yeah, keep in mind, I'm homeschooling my daughter three days a week, so that selected me,

Scott Benner 51:44
Mommy, what was the revolution? I don't know. Go ask the computer.

Jesse 51:50
I know. I'm like, Hey, you have, you know, I just recently told her. I'm like, hey, you've got a calculator on your insulin pump. You don't have to add it up in your head. Just push, okay. This package says 25 cards. Press the plus button. This package says 30 carbs. Press the plus button. Boom, you got it.

Scott Benner 52:06
It does it for you. I'm going to tell you something in about a month when Apple releases the new Siri. It's basically going to be AI. You're going to just be able to ask it like math, and it's finally going to, you know how everyone wishes Siri worked, but it doesn't, yeah. Oh, I hate Siri. It's gonna work like that now. Oh, good, yeah. So good, right now, if you ask it to add something up, it takes you to a website, and you're like, What in hell are you doing?

Jesse 52:30
I cannot stand Syria. I don't know. I have a huge problem with it. It never listens to me when I need it to listen to me, and it doesn't ever, you know, it's always like when I tell us something, like, You're not listening,

Scott Benner 52:41
it's going to be completely different very soon. So good. So T slim, you said control IQ,

Jesse 52:46
Yep, yeah, control IQ, I love it. Love, love, love it.

Scott Benner 52:49
And how did you figure out? Like, I mean, obviously started with some sort of injection, so you didn't stay with it very long. Did you go right to T slim, Was that your first

Jesse 52:57
pump? No, I we did the Omnipod. She has a pretty severe allergy to adhesive, okay, having that pot, I mean, she was, it was not working for her. And then on top of that, we have a pool in our backyard, and she was losing pods every single day. They just wouldn't stay on. We had, you know, I tried everything to keep those things on, and they would just fall off. And I said, All right, forget it. We I think we had them for four to five weeks. And then I was

Scott Benner 53:27
gonna say, Isn't it funny people's skin types? Yes, because we just got back from, like I said, we were on a vacation. It was a beach vacation. Arden does not wear over patches on her OmniPods, and she didn't have one thing, and she was literally just in the ocean constantly. Not one pod fell off, not one CGM fell off, like it just her skin just works well with the adhesive. And some people just don't,

Jesse 53:53
you know? Yeah, I do. Where, where do y'all are up north, right?

Scott Benner 53:57
I live in New Jersey, but we were, we were vacationing in the Caribbean. So, oh, okay,

Jesse 54:02
all right, so nevermind my I was gonna say, Well, maybe it's the humidity, because I live in a pretty humid environment, but, but, yeah, we're super it wasn't working for her, and I was, I was tired of it, so we switched over to the T slim, and have not gone back. She's about to be or she's about to get a new pump. Okay?

Scott Benner 54:21
She's been had it almost four years. I'm thrilled it's working for Yeah, yeah. Where are you at in your mind about the handoff of information? Like you bother yourself with an idea of, like, at this age, I'll be less involved, and at this age I won't be involved. Are you just watching it and just letting it be what it is.

Jesse 54:41
You know, I feel like I listened to a podcast that you talked about about this. This was before Arden was leaving for college. I remember listening to this one. I kind of took that to heart. My goal is by the time she's ready to leave for college is for her to be in a good place, to be able to manage what. Without me, and that's when I can be less hands on, but as long as she's, you know, and I've told her this too, as long as you're under the, you know, like our roof, and as long as you need me, I'll be there for you, and I can help you, but you need to start owning this as your own, because, unfortunately, it's not going away. I'm a realist, you know, and I'm straightforward with my kids, so, you know, with her, I'm telling her, Listen, I wish there was a cure for type one diabetes. There isn't do I think there will be. Who knows, at this point, you need to have it in your brain like, this isn't going away. This is my life, and I need to learn how to manage it. So let's take little bits, year by year to get you to a point where you don't need me and you can make decisions. Is that going to be 16 years old for her? I don't know. Is it going to be 18? I hope so, but I do think that I will always have to at least help her in the night time, you know, like calling her and stuff. I still

Scott Benner 56:01
pay attention at night at college, like I don't have to be as involved, and Arden's very good at it. But there's, I mean, there's stuff that happens. People get sick, you know, Arden sick right now, just tonsillitis, and it's terrible. And she's been sitting on the same chair in our living room for three days, and she slept there the last two nights. She can't even pull her ass up to go upstairs, to go to bed. Uh huh. If she wasn't home right now, if she was at college, she'd still be taking care of her diabetes. And last night, I mean, she's been her insulin needs have been, you know, very commiserate with fevers and, you know, and being ill and everything, she clearly has some sort of a virus happening. I texted her last night, like, 1130 I was like, Hey, I think you should test right here. Like, I think this is a time where I feel like you need a pretty big Bolus. It's getting late at night. Let's make sure that this number is super accurate before we before you make this this next Bolus, can you test? And she goes, I don't have my stuff with me. And I went, Okay, I'll get it, because she's literally having trouble standing up and moving around everything. So I said, you know, where's your bag? She carries this little bag in her purse. Has her meter and Chivo hypo pen in it, stuff like that. Let me get my text out so I can tell you what she said, Oh, where is your green bag? I don't know. Man, what I got from that was, dude, I'm sick, like, you know, and just because you have diabetes doesn't mean you don't get sick and have that feeling of, like, I don't want to do this. Yeah, right, she's gonna be okay. There will be a day where you're not involved in Charlie's life, by the way, I can't, oh,

Jesse 57:33
yeah. I mean, my brother, you know, he takes care of himself when he's sick and and stuff like that. But I think it's always helpful to have extra eyes, you know. And you know, like he has his wife who follows Him. But you

Scott Benner 57:46
also alluded to the fact that he maybe could be helping himself more than he is, right? No,

Jesse 57:51
he has great management, but he has been diabetic for so long that he's like, I know all there is to know. I know my body. Like, I don't need to know anymore. He's like, I got this. He's like, that, that Russian guy who was shooting at the Olympics. He's like, walking out there with nothing.

Scott Benner 58:09
Is he really having those outcomes?

Jesse 58:11
It's been an interesting last two years of diabetes for my brother, because he was diagnosed also with type two as well. So he's now on a GLP, and it has taken over a year to find the right one that works for him and dosage and stuff like that. So, you know, he did a whole year of like, titrating a certain GLP that wasn't doing anything. And then he finally, you know, I did convince him to, hey, maybe you need a different endocrinologist who will listen to you. And so he switched endocrinologists, and that endocrinologist put him on a different GLP, and now he's doing great. His insulin needs have dropped dramatically. Blood sugar is now chilling around closer to 75 to 120 he has hardly any highs.

Scott Benner 59:01
That's awesome. Oh, I'm glad, yeah. Hey, listen, uh, not that this means anything, but Turkish, oh yeah, yeah, that's right, yeah. And this will be six months later. So you're referring to the guy in the whatever they using, like, air, air, like handguns, right? He just rolls up, like everyone else has, like, protective wear, protective wear on all this stuff. He just kind of rolls up and pulls his gun out, like Dirty Harry, and he's like, get me a medal.

Jesse 59:28
That was the best thing ever. There's been a lot, there's been a lot of good stuff from the Olympics. You

Scott Benner 59:33
know, who I feel badly for? The female Australia break dancer. I actually, I'm starting to feel bad for her, actually, yeah,

Jesse 59:40
no, she's my favorite. They knew what they were doing. They're like, we're gonna send this 40 something year old professor to be a break dancer for our country.

Scott Benner 59:50
I think they dropped it from the Olympics already, by the way. Oh yeah, they did. Yeah, yeah. They were like, we're not doing this again. Sorry.

Jesse 59:56
That's a bummer, because it made for really good TV. I mean. And I was like, wow, I can watch dance offs, you know,

Scott Benner 1:00:04
I love she went home and did it again. Like, out on the street, they did a video of her and put it online. I was like, oh my god, stop doing this.

Jesse 1:00:13
Like, maybe she's my favorite. Maybe

Scott Benner 1:00:15
you're making sense. Maybe they're all in on the joke, you know what I mean? Because, yeah, little weird hand motions and body stylings. I'm like, You shouldn't be doing this. This is this looks like me doing this. Like, what do you I

Jesse 1:00:27
know I'm definitely gonna take that some of her moves to my son's middle school dance when I chaperone it and see, see if I can embarrass him a little bit. I

Scott Benner 1:00:35
like when she lays down to spin, she almost stops moving break the about that is she looks like she's gonna break her hip. Very ridiculous. Anyway. Is there anything we haven't talked about that we should have not

Jesse 1:00:49
that I can think of. What was the other subject I told you about?

Scott Benner 1:00:53
You blended advocating for yourself and not letting school nurses tell you what to do, and you about passing. So you kind of blended them together when you started talking,

Jesse 1:01:02
yeah. I was Yeah, yeah. I think I think we covered it. Let me

Scott Benner 1:01:06
just ask you a couple other questions then real quick, because we know your brother has type one, but do you have any other autoimmune things? Or does your husband or people on either side of your families,

Jesse 1:01:15
I have Hashimotos so and then I did tell you, I was one of five. So four out of five of us have hypothyroidism, okay? And both my parents hypothyroidism, wow, yeah, those are, I know. I was just talking to my oldest brother the other day, and he was like, I am the only one without hypothyroidism. This is, you know, I'm just watching it, you know.

Scott Benner 1:01:39
He's like, it's coming. I think, you know, I told him, but he's,

Jesse 1:01:42
you know, he's eight years older than me, and I'm like, Man, I bet you have it. And you just don't know.

Scott Benner 1:01:47
I was gonna say, why would he not take a look he has? But I did

Jesse 1:01:51
tell him. I said, you need to, you know? He said he's just been asking his getting blood work done at his primary care physician's office. And I said they're just testing your TSH levels. You need to go in and they're

Scott Benner 1:02:04
going to say, like, up to an eight is okay, or something like that, correct, yeah. And so

Jesse 1:02:08
I did. I was explaining that to him the other day about, you know, you need to check your your T for your t3 and then you need to see how, like, where your TSH levels are, because, you know, you could be there. They're within range. You know, the normal range is such a broad range, yeah, and I can have my TSH be within range and not feel optimally, right? So does he have symptoms? That could be the problem for you as well. And then, if they're not checking your T for your free T for, they're not tech checking those things, yeah, you're not getting the full picture. Yeah, you want

Scott Benner 1:02:43
a full panel for I have a family friend I'm trying to help now, and she's younger, so she's, you know, running into doctors who aren't helping her, and she's not real good at, you know, arguing back yet, kind of walking her through it. But, you know, she's five six hypothyroid symptoms, and they're changing her life, like, significantly, you know, her TSH, comes back at like, over five, and the doctor's like, that's normal. And I was like, That's not normal, right? And she said, Oh, she retested it and it came back at 2.5 and I'm like, Yeah, that's still not normal, right? And then they tested it again, it was 4.4 and I was like, Yeah, you need, like, thyroid medication, right? And the doctor is like, No, you don't. This is all very normal. Like, it, I don't know what world you think this is normal. Like, I know.

Jesse 1:03:29
I keep telling, I told my brother, Hey, you gotta this other one. I was like, Hey, you gotta go see an endocrinologist. If you're I'm not hating on the medical community at all. He doesn't specialize in that. You know, your primary care physician does not specialize in this, so you need to go see somebody who can look at a thyroid panel. Know what labs to pull right and then be thoughtful, actually, yeah, know what they're talking about, because they're focused on

Scott Benner 1:03:54
we need these doctors to be more specific about these tests, because we need them to do more like I'm telling you, I'm going to be right about this in the next handful of years, as GLP medications become available for type ones and they become available in vials, we're going to need doctors to tell you, Hey, listen, you know, back in the day when this all started, you know, the lowest dose of this you could get was 2.5 milligrams, but that's too much for you. Like, you know, like, we need you to do a milligram. And I don't want you to do it every seven days. I want you to do it every, I don't know, five days, 10 days, whatever ends up optimally working for you. But if you look at how little doctors are valuable in dosing your insulin, then you're going to realize how invaluable most of them are going to be with your thyroid medication and then with this, I mean, this GLP thing, like Arden has insane benefits from it, but the lowest dose is too much for her, right? So we're literally in the middle of figuring all of that out. We and I have a doc. I think I know what to do, but we're waiting a few days for her doctor's appointment where we're going to go sit down with her doctor and discuss all this. We're. Because she needs it, but not that much. She lost too much weight, and she had too, too hard of a time eating. And so where most people just go, oh, well, I, you know, it didn't work. I because I can't eat. I'm like, no, no, it nine out of the 10 things we wanted out of this worked great. One of the things didn't work, like, let's right, change the dose, yeah, you know. And luckily, we have a doctor who will be like, yeah, that's sensible. Let's figure that out, right?

Jesse 1:05:27
Yeah, it's hard to find, you know, I feel like you have to find the right doctor who's willing to work with you. Like I said earlier, our endo works with us, you know, and not, you know, we're on the same team, instead of, you know, fighting against us. And I've had endos who were like, you know, I know more than you. And there's been times where I'm like, No, I'm no more than you when it comes to this.

Scott Benner 1:05:47
So why does it matter? Like, let's just work together and figure it out.

Jesse 1:05:50
Yeah, yeah. I just remember arguing with my you know, we're arguing about technology and stuff, and I'm like, No, that's not how this insulin pump work. Also,

Scott Benner 1:05:57
forget doctors. Good luck finding people that can think through complex things in any walk of life, not just not just your doctor, you know what? I mean, we have a greater expectation for them, but they're just people. It's not right. I mean, so anyway, right?

Jesse 1:06:10
And you know, I feel like they don't get the pump draining that they need. You know, they pass that off to their diabetes educators in their office if they have them. But I feel like my endocrinologist should be, endocrinologist should be knowledgeable about the pump that is being, you know, my daughter's using, and my new one is, it

Scott Benner 1:06:27
doesn't seem crazy to ask for that, right, right? Yeah, could you know how she's great? Would you mind taking 15 minutes and teaching yourself this? Yeah,

Jesse 1:06:37
we're actually our next pump is going to be the Moby. I'm super excited. Oh yeah, we tried to get the Moby our our endo told us, like, six months ago, she's like, Oh, okay, they're tandems rolling out this new thing this summer, where, if you have the x2 and you want to upgrade to the Moby, they will do that for you at no charge. And then, you know, the following year, they'll, you get charged for it or whatever. Oh, some upgrade program, something like that. Well, I called and I submitted the forms for it, and then they called me back, and they're like, oh, you can't do that. You have to be 12 months from your you have to have at least 12 months left of your warranty to upgrade. Okay? And you have 11 months. So sorry, you're denied. I'm like,

Scott Benner 1:07:24
Are you serious? Those are all making sense. That's fine, yeah.

Jesse 1:07:27
Like, okay, that was, uh, took you three weeks to get process the paperwork, so let's backdate it.

Scott Benner 1:07:33
Well, let's just take four more weeks and give it to

Jesse 1:07:35
me. Yeah, I know. So yeah, you'll

Scott Benner 1:07:39
end up with it eventually. Yeah, she's

Jesse 1:07:41
gonna get it in the new year. So we're, I'm super excited. It's the same system as the x2

Scott Benner 1:07:47
Yeah, it's the same algorithm. Yeah, exactly. Yeah. No, that's exciting. Again, I'm I anytime people get things that work good for them, I think that's, I think having those choices is a minimum of what we should be asking for. So, right, right. Absolutely fantastic. All right. Well, Jesse, you were great. I appreciate you doing this with me. Thank you very much. Thank you. It was so it was so fun. Did you have a good time?

Jesse 1:08:09
Yeah, yeah. I loved it. And I feel like I could talk diabetes forever. And I feel like the first, I don't know if you remember this the first time I ever talked to you. You talked to me on the phone shortly after my daughter was diagnosed. I don't know if there's no way you remember this, but I remember this, and she had just been diagnosed, and I had reached out to you, and you were super kind, and you were like, can I just call you? It'll make more sense if I call you and you talk to me on the phone. And that's when I first realized too, because her her Endo, at the time, had said, Oh, she I want you to treat her blood sugar if it's 100 or below, yeah. And when I talk to you, you're like, 100 is fine. And I was like, Oh, it is fine.

Scott Benner 1:08:53
Yeah, yeah.

Jesse 1:08:55
I don't know. I just remember it. And you were super, you're super kind. Well, first

Scott Benner 1:08:59
of all, I'm fantastic. And I think everyone knows that you didn't have to bring it up, but I don't remember. I apologize for not remembering, but I think what I hear you say is that if everybody could just talk to me for a half an hour when they were diagnosed, they'd be okay.

Jesse 1:09:11
Yep, yep. You put me on the right track, and it was great. And I'm super thankful for your podcast because, and I tell everybody I know that's been diagnosed, like you've got to just listen to this, like I could talk your ear off, but just listen to this will be easier. Yeah,

Scott Benner 1:09:25
no, I appreciate that very much. And it's funny. I was trying to be funny, but at the same time, I do think that I have it down to a brisk 40 minutes that I can, like, put you on the right path. Yeah, I

Jesse 1:09:37
honestly, I think you and I talked on the phone for 20 minutes, if that, and I was like, I feel way better about this

Scott Benner 1:09:46
situation. Good, good. I'm glad. All right, that's excellent. Well, thanks so much for doing this with me. Yeah, thank you. Okay, cool. Hold on one second for me,

I'd like to thank the ever. Sense 365 for sponsoring this episode of The Juicebox Podcast, and remind you that if you want the only sensor that gets inserted once a year and not every 14 days, you want the ever since CGM, ever since cgm.com/juice, box, one year, one CGM, guys, you want to go for a walk with touch by type one in Orlando, you can do it and you can have a great time. Meet a lot of wonderful people touched by type one.org, go to the programs tab, click on Steps to a cure, and get yourself registered right now for the beautiful walk that's coming up on March 8 in Orlando. Touched by type one.org, earlier you heard me talking about blue circle health, the free virtual type one diabetes care, education and support program for adults. And I know it sounds too good to be true, but I swear it's real. Thanks to funding from a big T 1d philanthropy group, blue circle health doesn't bill your insurance or charge you a cent. In other words, it's free. They can help you with things like carb counting, insurance navigation, diabetes technology, insulin adjustments, peer support, Prescription Assistance and much more. So, if you're tired of waiting nine months to get in with your endo or your educator, you can get an appointment with their team within one to two weeks. This program is showing what T 1d care can and should look like. Blue circle health is currently available in Florida, Maine, Vermont, Ohio, Delaware, Alabama and Missouri. If you live in one of those states, go to bluecircle health.org to sign up today. The link is in the show notes, and please help me to spread the word blue circle health. Had to buy an ad because people don't believe that it's free, but it is. They're trying to give you free care if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama and Missouri. It's ready to go right now. And like I said, they're adding states so quickly in 2025 that you want to follow them on social media at Blue circle health, and you can also keep checking blue circle health.org to see when your free care is available to you. 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 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. The episode you just heard was professionally edited by wrong way recording, wrong way recording.com, so.

Please support the sponsors

Donate