#527 Chainsaw Challenge

Nicole is having trouble getting her son to pre bolus.

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

Scott Benner 0:00
Friends Hello, this is Episode 525 of the Juicebox Podcast.

On today's show, we're going to be speaking with two people, Ryan and Jamie, Jamie and Ryan are married. One of them has diabetes, they have two children, one of those children has diabetes. This is their story. Can you imagine if I was like, This is their story. Anyway, I thought this was an interesting conversation. And I felt like you might want to hear it as well. So now it's a podcast episode. While you're listening while you're listening, while you're listening? While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. I've discussed it with the editor and we're going to leave all those mess ups in the show. So you know, I feel like a human being to you. That's the important thing. I just feel like I'm one of the guys and I make mistakes too. Which I do all the time. I just I'm way too lazy to edit that out. So

this show is sponsored today by the glucagon that my daughter carries, g vo hypo pen. Find out more at G Vogue glucagon.com forward slash juice box. The episode is also sponsored by the Contour Next One blood glucose meter. Find out more at Contour Next one.com forward slash juicebox. Battling push record again, what was that now?

Jaime 2:01
Well, my time wandering video just for the recording place. I said I'm sampling we're talking I'm so excited. I'm excited as well. It must be like weird for you. Because everybody feels like they know you. I get a lot of messages talking to everybody else.

Scott Benner 2:14
Yeah, I get a lot of messages that are written to me. Like my mom writes to me. It's like, Hey, baby, is everything okay? Like, you know, we don't really know each other. My favorite is, and I brought this up yesterday with somebody I was talking to, is that people will correspond, and then you'll go back and forth with them a little bit. And sometimes, I guess to them, it probably seems like a lot. I wish I don't want them to feel like it doesn't feel like anything to me. But I have a lot of those conversations. And so they're meaningful in the moment, but I don't recall them afterwards. And you know that I'll get a follow up message, it'd be six months later be like, hey, check this out. I've changed the basil and everything's good now for her. And I'm like, I'm sorry, I don't know who you are. Who is her? What are we talking about? Like, you know, because then they start, they start talking about diabetes stuff. As if I'm five seconds beyond when we stopped talking, I think the way they probably are, which is great and understandable. But I'm not there anymore. I've talked to 1000 people since then. At least you know. And so it's just like, it's like, I don't know what you're saying or who you are who you're like, you'll have to read like, please don't like make me. Like just tell me that that's my here. If everyone's listening, here's my message. If you're going to send me a message and then send me another one later, act like we don't know each other so that I don't have to scroll back up in the messages and figure it out. If you want to make my life better. Keep me from having to scroll up. That would be amazing. Seriously, yeah, that's it seems fair, right? Absolutely. So we feel good. I do. Do we care about Ryan or? No? Yeah. No, I just meant Jamie's gonna cut you out of this pretty easy. I can see.

Ryan 3:55
There's no doubt.

Scott Benner 3:59
So why don't you guys go ahead and introduce yourself in order of importance. So Jamie, you go first.

Jaime 4:04
Okay. My name is Jamie. I am married to Ryan. And we have two daughters and our oldest who is five was diagnosed with type one. My poor her first fourth birthday.

Scott Benner 4:19
How old is she

Jaime 4:19
now? She's five now.

Scott Benner 4:21
So about a year. We're not? Yeah, it

Jaime 4:24
was July of 19.

Scott Benner 4:26
So you're not even giving yourself any credit. You're a year and a half in already?

Jaime 4:29
Yes. Ryan, obviously I'm married to Ryan, and he will do his own spiel. But we've known each other since we were 20 How old are you

Scott Benner 4:37
now? How old are you now Jamie? I'm 37 Oh, wow. Nice seven years you've lived in a row. That's a lot. That's a by the way that's a clerk's joke for only people have ever seen the movie clerks. No one else will get that. Ryan Go ahead. What about you?

Ryan 4:55
So I am. So I'm Ryan. I was I was done. diagnosed with type one when I was 16 years old. I'm also 37. And yeah, and Jamie's lived known me for too long for her own good. You know, she's like a saint because he's lived with me this long. There's no doubt about that. But, but yes, and we've, you know, we have two lovely daughters and one of them is Type One, two. So we're learning, I'm learning from a different side of things as of recently,

Scott Benner 5:29
so Okay, Brian, how old were you when you're diagnosed? 17 1616 and you're 37. Now, that's over 20 years, I figured that out very simply. And anybody in your extended family has type one diabetes.

Ryan 5:43
Now know a lot of people have type, you know, type two and stuff like that. But absolutely nobody in my family is type one.

Scott Benner 5:49
How about thyroid issues?

Ryan 5:52
No, no real. My grandmother had a thyroid issue, but it was as she was older and stuff like that. So nothing, nothing significant, though.

Scott Benner 6:01
Gotcha. Okay. And 20 years ago, you were were you like regular an MPH? Or did you just make manmade and just make fast acting insulin? No, it

Ryan 6:11
was mph. It was mph. Yeah.

Scott Benner 6:13
Wow. How long? Did you do that? For? Probably not too long. No, I

Ryan 6:16
did it. So I got diagnosed, like in my, like, junior year of high school. And then it was I went on the pump when I went into college right at, you know, like, 17 and a half 18. So

Scott Benner 6:30
it's interesting when you talk to older type ones. And they, they, they always use that phrasing I went on the pump. Yeah, it's a very common phrase for people who have had diabetes about as long or longer than you have, like, there was diabetes. And then this magical the pump came along. And some people resisted it, and some people tried the pump. It's a Is that how it felt?

Ryan 6:54
It was magical. It was fantastic. Well, I mean, obviously, I was 18. So I was not my brain was not fully developed. And I was doing stupid things throughout my entire, you know,

Scott Benner 7:04
I college. One second, Jamie, is he have a fully developed brain now? Or is he still doing stupid things?

Jaime 7:11
No. I mean, it's a lot more developed. But it I'm you know, I don't know if it's all the way there.

Scott Benner 7:15
How many more decades? Do you think Ryan needs to become an adult? fully? Yeah.

Jaime 7:19
I don't know. Like, at least two.

Scott Benner 7:22
And you've Jamie have been an adult since you were 11? Is that correct? Yeah, absolutely. Make sure everyone understands. People think anyway, right? Go college, not fully developed brain? What were you gonna say?

Ryan 7:32
And then, you know, so the, but the pump helped. I'll be honest with you, and then I've gone through all the different, you know, technology, you know, when you know, I got into the CGM pretty early on, and, you know, was on, you know, I was in the I did the mini med pump for a long time. And then I had some problems with the sensor, you know, later on in it. And then I changed over. I was on Omnipod, for a little bit when my daughter Ellie got diagnosed, because she could only go on the pod and we got her on that within, I want to say probably like, probably a month. Yeah, less than a month, we got her on the pod. And we got her on the CGM. Within like two days of her being diagnosed, I was questioned. Oh, yeah. Yeah. And then now I'm on the tandem.

Scott Benner 8:19
Okay, let's go question Ryan. What's the biggest difference between modern insulin pumps and those first ones?

Ryan 8:26
Well, I mean, if you look at the integrated stuff that's going on now, I mean, it there's drastic difference, but to be honest, like, I'm the extended basals, the temporary bezels all those things were a little bit, you know, hard to use in the beginning. And they used to use these things called like, square wave boluses. And that kind of stuff. And, you know, they were, I just felt like I again, maybe was just because my age, though, I feel like I didn't really think nobody really taught you on them. And you were just kind of like doing and you're just like, Oh, well, you know, let me just try this. Let's see what this does, or whatever else. And I still do try things. But it was just it just felt very, I don't know, in you know, not really informed, and they weren't nothing was integrated. So that was a problem for me.

Scott Benner 9:11
In fact, then insulin pumps are just delivery systems, whether they were 20 years ago or now. And they've made improvements and given you different, you know, things you can do like, you know, extended Bolus and Temp Basal and stuff like that, which are obviously a really valuable. But in the end, it's just I try to explain that to people. They're like, Oh, well, we're moving to this. It's such a big deal. Like it's not like a needle as a delivery system. A pen is a delivery system. A pump is a delivery system, it's all of this just the way to get the insulin inside of you. There's a lot that you know, you can do with some and and not others, but still, it really should be looked at like that your point about the algorithms is huge. That's this is where pump companies are going to get to distinguish themselves with their algorithms. Jamie, I was wondering, did you did you know Ryan back in high school

Jaime 10:01
No, we met. We actually met and we were both studying abroad. So I met him like, I don't know, three or four years after he was diagnosed. I think right now we're 20. Yep. Yeah.

Unknown Speaker 10:14
I agree with you. He doesn't know. And

Ryan 10:16
I don't know at all. Where were you studying? Australia? Do you?

Scott Benner 10:24
Does everyone listening know how hard it is for me not to make like a ham fisted, 80s joke every time somebody says, we're studying abroad, and I want to say which broad were you studying, but I know that that's not appropriate anymore. I just know what it's like when someone says hormone, every time someone says hormone, there's an eight year old inside of me that goes, Hey, do you know how to make a hormone? And then there's a simple answer that it's completely inappropriate and 2020. That was so funny in 1982, and none of you will ever know. And but you'll know that it's somewhere in the back of my head, it pops up every time somebody says the word. Because I'm five years old. Still, Jamie? In case you're wondering, I need at least 20 more years to become a full fledged adult.

Jaime 11:09
They all have their own path, right?

Scott Benner 11:11
My path seems to be very long, and it it keeps circling back through when I was 26. But I get a little ahead, I come back again. What does it I should say? Does it enter into a young Jamie's mind? I'm starting to date a guy with diabetes that's different, or how much of it are you aware of or paying attention to?

Jaime 11:36
Um, and kind of how to answer that question. I like how much of a role did it play in our relationship?

Scott Benner 11:44
I was looking for honesty, if you're wondering how I was hoping you would answer the question. No, no, I

Jaime 11:47
am going to be completely honest. But is that what you mean? Like, how much did it matter in our relationship?

Scott Benner 11:52
I mean, did it impact you? Did you find yourself going? Or, you know, were there times when you thought I should find a boyfriend that doesn't have diabetes? Like how much of it gets separated? How much of it is Ryan? Who has diabetes versus Ryan? And this kind of his diabetes was sitting on his shoulder? So it makes sense.

Jaime 12:13
Yeah, I never like it never was an issue for me, as far as Are we going to be together? Like that was never. It never even occurred to me to not be with somebody because of that. We did have I would say, like, some struggles as far as and Ryan, you can try them whenever you want. It. I think it played a bigger role in the early years of our relationship, because I think we were both still learning a lot about it. And I feel like I learned a lot about it kind of on my own. Like I don't I feel like he just kind of did his I don't know how comfortable you were talking about it in a minute. And would you say that's fair, right.

Ryan 12:53
Oh, yeah. No, I always like it's very funny because Scott, like, you like talking now. It's just like it. Because I grew up in I grew up in New Jersey. And like, it's like, he, I feel like we're like, like talking to like one of our friends. It's very interesting. But um, you but like, ya know, when I first did it, I mean, we didn't like even my house and stuff like that growing up. We didn't talk about it a lot. Like it was kind of just like, I was old enough. So it was just like, Oh, well, you know, we talked about it in the beginning when everything started, but then when I went off to college, I kinda was just like, Oh, well, Ryan just deals with it. So that's kind of how I dealt with it. And it wasn't really a top of a conversation or like, you know, I used to try and like hide my insulin pumps and stuff like that. So like people didn't know, in that kind of stuff. When I first You know, when I first got diagnosed, it was just felt weird, but because I didn't know anybody else with it.

Scott Benner 13:41
It's fascinating to me, because, of course, my friend Mike and I grew up together and he had diabetes, and he was diagnosed a similar time in his life as you are. And it occurs to me as you're speaking that diabetes 20 years ago, was like psoriasis on the back of your knee. You just wear pants all the time instead. And and that was the end of like, hey, I've got this thing on the back of my knee. I don't want to see it. I'm going to cover and that's that and we don't like I have this feeling in Ryan's house. His parents were like, Huh, as tough luck, kid. Alright. See ya. You have brothers and sisters? Ryan? Yeah. David odours is Yeah, they were probably like, ah, she got off lucky. See a Ryan, you want to try that? The pump? Like, you know, like, like, it was just like, honestly, your parents have a kid with type one. Now. I know. You were just on your way out the door, Ryan, but the way you're managing your daughter and the way that your parents were involved in you, there's probably no similarities at all right?

Ryan 14:41
No, I think I mean, my parents are very empathetic in the beginning of everything and really like, you know, tried to learn and did that kind of stuff. But again, like I was like, it's kind of out the door. But no, I mean, I'm, me and Jamie are really actively involved. I mean, we got we got her a one c down, you know, and we diagnosed her like, like Ellie, really Quickly basically, yeah, I don't think she had like, again like, I don't know the scientific part of it or whatever else but I, you know, I you know, she her sugar was like 230 and she never went to the hospital she went we took her right to you know, Joslin Diabetes and Boston and but she did an outpatient. So it was kind of cool in that sense. And you know, we've you know, the CGM and everything else going along with it makes it a lot easier to be kind of more involved. I

Scott Benner 15:28
feel if that makes sense. Last question along these lines for you, Jamie, I put you I give you a magic wand and a time machine. And I send you back. You said it would it paid no part in you your decision about dating Ryan or not? I'm assuming because he was so hot with that jersey accent in Australia.

Jaime 15:46
You know, really does something.

Scott Benner 15:48
Yeah. pulls you right? But, but I take you back in a time machine. I tell you, you marry this guy, you're gonna have two kids, one of them's gonna have diabetes. You want to bail? No. Okay, good. What did you learn? growing up with Ryan. And I don't know that. People who haven't been married or younger people would think of it this way. But when you get married, you do grow up together, like so what did you learn growing up with Ryan, that's helping you with your daughter.

Jaime 16:21
So many things really, like he has such a great attitude. And it's literally never caused him to stop something that he wanted and wanted to go for. Or he's never had, even when they go, I'm sorry, I can't curse on you. Even on like a rough day. Like when all the diabetes things might go wrong. Like he just never has had a bad attitude or felt bad for him. So when you know, it's okay to feel bad once in a while you know about it, like it can suck sometimes. Yeah. So I think he's just always had a really positive attitude and sort of like, that has been really inspiring. So we sort of do that with her like, yes, it kind of sucks that, you know, all these things just failed in one day, but we're going to change them, we're going to move on, and we're gonna do whatever you want to do. So I think that has probably been the best thing that I've learned from him as far as like, how to really embrace it and empower her. Excellent.

Scott Benner 17:17
Brian. How many of those days? Are you just faking it till you make it?

Ryan 17:26
You know, to be honest with you is like I don't I don't hate that I have diabetes. Like, that's not, it's not one thing that I really hate, I feel like it did. It helps me grow and think about things differently than other people do. You know, I would probably be way worse off if I didn't have diabetes, in some ways, to be very honest. And you know, and I like the way that Jamie thinks that I always am positive, but there's definitely like that. There's, there's times it really sucks, and you're just like, this blows. But and then you know, like, and believe me, I'm not the easiest person to live around to I can be I can be an ad. Sorry, I can't curse on here either.

Scott Benner 18:08
I gotta, I gotta be honest with you started in Jersey and ended up in Boston, I'm figuring there's gonna be a lot of bleeps in this.

Ryan 18:16
But so, you know, so So I think, you know, again, you do fake it at times. Like, there's no doubt about it. And you have to, but overall, like, I don't know, my experience with diabetes is, I think, different than some people but really on point with a lot of others.

Scott Benner 18:31
Yeah. Can you give me an example of how your life's better with diabetes?

Ryan 18:36
Just in a way, like have, you know, thought processes and like, you know, do I really want to eat this entire pizza? Yeah, I know, that that's, you know, you know, some nights after, you know, a longer night for whatever reasons, yeah, that might be a great idea. But I know, my trigger is gonna be 600 by the, you know, in the middle of the night, because just have all the fat and whatever else. So, like, it just, it just helped me out, well, maybe I only need three pieces. But then again, like, there's other days that I eat seven pieces, and I'm like, I'm gonna try my best, you know, I'm bolusing like, you know, you know, balls to the wall, and just trying to get as much as I can in there. And, you know, trying to do it, because it is, like I am, I'm normal. But I think, you know, in regards of, like, healthy eating, and, you know, trying to just, you know, make decisions for, you know, and I'm a social worker, as well. So it just it really helped my career of like, wanting to impact other people in a positive way. Yeah.

Scott Benner 19:33
Yeah, that's a expected answer, honestly. And how I find it here too, is it just gives you a perspective. You don't you know, it's like you're leveling up on perspective as you're starting in life. And I have to say I am. It's December 15. For context. I think I'm in my 123 4/5 day of wearing a CGM right now, and I've lost five and a half pounds for the exam. Really Accurate reason of what you just said is that I, I made this, I said to people look, I'm going to put my blood sugar online. So you can see how healthy pancreas or working pancreas handles food, right? And then we're going to move on and my wife's gonna do it next to probably has little pre diabetes. So you're gonna get to see that and then we're gonna have some type ones come on and do it. And people are gonna get to watch other people's blood sugars and see how they Bolus and stuff like that. So part of it is I have to log my food so that people know, hey, he went up here, and oh, here's the meal, right? It's really cool. And hopefully it's when people hear this. And so going on on the site. It's Juicebox Podcast comm forward slash CGM live.

Ryan 20:38
But no, we thought it was really cool. And we looked at it. I was actually surprised about your serial one that you did your serial challenge that didn't go up more than it did. So I don't know.

Scott Benner 20:47
I have to be honest, I was too because I took two different sugary cereals, mixed them together, had a certain word each of them and I drank that horrible milk at the end with all the sugar in it just was so nauseated when it was around, like I'm just doing this for the podcast. But the process of having to log the food has made me skip over a number of different things I thought to pick up. Because, because just not because I was like I don't want anybody to see. But because I was like, Well, I don't want to like bastardize this, like let my system clear out. I'll put something else. And so I'm obviously snacking at odd times of the day that I don't imagine that I am. Because like I said, the weight and and I'm not eating well, I'm trying to tax my system. I mean, I haven't had a bowl of cereal in years. And I ate so much candy yesterday, I got nauseous, I was just like, Oh, I like a feeling for when Arden says to me, I can't eat anything else. And I'm like, you have to drink this, you're gonna die. And she's like, well, then it's my time, because I can't drink any more juice. I had that yesterday, I was like, let me just take more candy right here to see what happens at this time of night. And I took him maybe like 40 carbs, it was probably mostly sugar. And I just was nauseated afterwards. I was it was like way too much for me. Anyway. And it looks like your pancreas is working pretty well. Yes, it does. And I'm almost 50. So I figured it's only got a really eight Look, I know how I feel, it's probably only going to make it like 15 more years. So I'm probably going to be okay. For today, I can't lift my shoulder up for some reason. So I'm pretty, pretty aware of my age today. To me,

Ryan 22:21
it makes me look at it to just to be like, Well, you know, this is what it's a really good like visual to get people to see like, this is how a real panky was just working, I really need to work like I was talking to Jamie. I mean, my targets are between, you know, 7075 and 140. And I was just like, I really need to bring those down a little bit more to really get in that range. And she's like, don't be Don't be like that, you know, like, but like, you know, that's, you know, I try to you know, I don't know, it just it really, it makes you want to get better, better readings for me I

Jaime 22:53
can I just I didn't say don't be an app, I just said like, you just move it down like two or three times, which is great. And his range has been great. His shoulders have been great. He feels great. And if you want him to go lower, of course, I would support him. I just sometimes he does it all at once. And I'm and maybe just go like a little bit lower, and then a little bit lower. You

Scott Benner 23:12
know what I'm saying? If only boys were girls, then every girl could be happy.

Ryan 23:17
Well, and I wasn't saying it in a negative way, either. Because she's absolutely right. I don't know what you like, because if I do that, like Believe me, I will I will bottom out more than I do already. So I i 100% support what she says it's 100%. Right,

Scott Benner 23:31
I just think of it as their indicators to me. So I like to know when ardenne goes under 70. And I like to know when she goes over 120. But on hers, I think we have it set at 7130. Because if she should rise up over 120 a little bit, and we try to bump it back down again. She doesn't need to be alarmed to know that her blood sugar's 126, leveling out and coming back to 119. No, like that's not necessary. So there's a way to manage it. But I think knowing I think the biggest mistake that people make is setting a high alarm so high that doesn't go off, it completely takes away the value of a Dexcom of being able to re address an insulin mistake before it becomes a problem. That's all.

Jaime 24:17
Yeah. And so we also have those kids. Sorry, go ahead. Can you shut this kids up, please? Hold on.

Scott Benner 24:29
I don't know what you got to do. Or if you've got a closet that's on the other side of the house or something like that, but they need to get into it. We're making a podcast here. There's important things happening. Now Thank you very much. I would just I you know, I was kidding. Great. Mostly you didn't kill them or anything. Right. And then a strange turn of events. The mother killed the daughter who she was on the podcast talking about. That's the power of podcasting people. She wanted her to be quiet so long later very regretted fell over the whole thing. A little bit dark, she's been locked in, don't lay they lock you in an asylum. You don't have to go to prison. It's fine. Of course not Jamie, to this, which is one of your ideas, which one of you had the idea to do this, by the way?

Jaime 25:16
Oh, I know, I've made probably, then lead me out of it. I started listening to it first. And I kept telling Ryan, like, you're really gonna like it. Like, he's, he's not like a bush. This is gonna be like, you know. And then one day, he came back from the grocery store and was like, that was it. And then he started like listening obsessively. And then I was like, I'm gonna get us on this show. And then he went and did it. So I don't know, it was a collective effort, but we just really wanted to be on it. That's

Scott Benner 25:46
excellent. Brian, you listened while you're grocery shopping?

Ryan 25:48
I do like it. Literally, what would you talk about? I can't remember which one it was, it might have been. You're the diagnosis story that you were talking about. And I was literally crying in the middle of the grocery store. And I was like, Oh, my God. do this anymore. You know, so that's, but yeah, no, I listened when I go grocery shopping. Sometimes.

Scott Benner 26:11
I'm gonna wait like months. And I'm gonna stop in the middle of an episode somewhere and just insert my voice going, Ryan, it's me. Scott. Are you in the grocery store crying again. I could be doing simple mean, shout outs to listeners as a way to add fun to the podcast. Now. I'm sorry, I make a lot of people cry. I feel bad about that. Usually I say I make a lot of ladies on the internet crying. But apparently it's ladies and you, Ryan. So I got him in that category. I get filled up a lot while people when people come on the podcast. Sometimes I don't say it. But sometimes people are talking and it's hard not to be emotional, you know, with what's going on in their lives. Anyway, so Jamie. Last year, it sounds like you diagnosed your daughter in five seconds. So

Jaime 27:01
well. First of all, we were on vacation. Of course. Yeah. And honestly, we probably would have done that first night. But because of like the circumstances we really couldn't tell. And then so what happened was we It was like a heatwave. So we went, we got somewhere we've been traveling kind of for a few hours. And it was like really, really, really hot, like an actual heat wave. And that night, she had like a minor accident, which, literally since she was potty trained, she's never wet the bed ever. So we thought it was really weird. But we had also all been drinking gallons of water and we were in a new place. So I was like, I don't know, right? You know, we'd sort of like Well, let's just the and then the next night I have them again. And she was like I'm so thirsty. And literally the next morning we checked her sugar. We went to the doctor.

Scott Benner 27:54
Do you guys talk about it after she said she was so thirsty? Did you go into another room and do that parent thing? Yes. Yeah. Who said it first? Do you remember? Like who uttered the words? Maybe she has diabetes?

Jaime 28:06
I might have? I don't I don't know. Honestly, it probably was both. Like I don't think we were on the same page. I think we both knew that minute.

Ryan 28:12
And that literally like gave like a look. It was like a look at we were like in the bed was like huh. And I just like pulled out my tester tester there. So

Jaime 28:20
no, we let her sleep at night. But we did it in the morning. And you know, the other weird thing is that summer I had had I had she was sick a couple weeks before like a week or two before I had brought her to the doctor to make sure she was okay to go to on vacation because she just had like a virus that and I was like, she seemed really tired. That's the only other thing that I saw with her is she was really tired like she was napping more than she ever had. And so I brought her to the doctor. And they had run her we had had them running her a Wednesday. Anyway, they ran in September. So we had bloodwork done, and everything else was fine. But that was like sort of the only other symptom that we saw. And then that happened and we just went and I'd say

Scott Benner 29:06
you're talking to you is cementing in my heart that I think it's bad for me to bring Kelly on the podcast because Ryan just said something and you just ran him you're like No, wrong. You got that wrong. I know. But that's not I don't need that on the podcast. I don't need Kelly telling me I'm wrong about stuff. Like sometimes. I don't know. It's my best recollection. You know, like my fear is, is that I've said something? You know, like in the past where I'm like, I tell you guys like yeah, then on Wednesday, and she's gonna come on and be like, that was Tuesday. You're an idiot. And then everybody's gonna be like, that guy is an idiot. Why am I listening to him? And then that's it that my podcast is over. I can't people cannot see me as a husband. It's not good. It's a bad look for men. It's a bad luck for anybody but pretty good luck. I feel like it's in pretty good shape. There's no doubt about that. Ryan you have to stay in that house when we're done talking Kelly can't hear me right now. Difference between your response and my response, by the way. But No, but seriously, I know listen, I what I really wanted to say was it's interesting how in those moments, your memories get conflated. And it's it always makes me think, I wonder when people are talking like, how much of it? Are they really? Is it just how they remember it? Or if it's really how it happened, I think and I always think it's close enough that it doesn't matter. Like if Ryan's version or your version doesn't change the events as they move forward, you know what I mean?

Jaime 30:31
Well, so I, you know, and I'm happily like, I admit, when I'm wrong, not always like easily, but I couldn't be sure that we were like, you know what, we're going to check her in the morning, there's really nothing that we would do differently right now. Can we maybe you're right, maybe we did checker, when we checked her in the morning, called the doctor and left, basically, my wife

Scott Benner 30:51
says that she admits when she's wrong. And then I asked her when the last time she was wrong. And she says it hasn't happened yet. But I will admit it when I'm wrong. So I don't know. Meanwhile, it doesn't matter. Like that's my greater point is that the way it happened is fascinating to me. Like, that's where I think that it becomes less important. Right? The the like the granular details, I always think of, I used to work for my uncle when I was a kid. And one day, you know, you've got like this 15 minute coffee break in the morning, you're breaking yourself in this horrible heat, I used to work in a sheetmetal shop. And you know, you'd just be collapsed somewhere trying to like, get enough energy to get to lunch. And he'd come out, start telling a story. And it was like, I'll never forget back in 1950, mazak, 58, or 59. And you're just sitting there going, why would it matter if it's 58? Or, like, just get to it? And? And wait, I do remember because we had that red Ford pickup truck? And was it blue? And you're just like, come on, man. Like, there's an art to this, you know, and these little details and then at the end, it's about a dog that gets hit by a bus and you're like, Well, what does that have to do with the truck? So anyway, I see storytelling as it's important, like the story is important sometimes, right? Regular details aren't as much. Anyway, we've gotten sidetracked with my fear of having Kelly on the podcast.

Jaime 32:15
I think you should have her on. And like, as a viewer, not just like, as a wife who's, you know, running ran over repeatedly on this podcast, but like, it is nice to hear both perspectives, especially since you are always the one sort of dispensing it's like, just sort of nice to see how teams work. Basically, as far as like, I don't know, I've really enjoyed that aspect of your of your podcast, you're

Scott Benner 32:38
more of like a team, like the way an owner of a football team is involved in the team. Like they pay for everything. And then once in a while go Hey, why are you doing that? No, Kelly knows. Kelly knows what she's doing up to the point. And I think that if I dropped this in her lap, that she'd figure the rest out. She actually joked the other day. She's like, Oh, you can't die because an author listened to that podcast. It was like it's good, you know, and she's like, whatever. But now she will be on at some point. Actually, we just got a microphone so that Arden can be on are we gonna do harden first and then we'll see where Kelly goes. Maybe I'll have to wait till 2022 for Kelly. I gotta tease this along a little bit, you know? Anyway, so Okay, so we figure out that she has diabetes she basically has like the equivalent of like, you know, she like you missed the Bolus by three units because our blood sugar is not even that high. Ryan goes right into I know what I'm doing mode you do who takes the lead I'm so interested in who jumped ahead.

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Jaime 36:36
Again, I was really like a team effort like so at that time. Our youngest had just turned one we were it was our second day on vacation. And we didn't really even know where we were. So we called our pediatrician. But so where are we? Where are we? We're two hours from like, our home area and two hours from Boston. until either way, it didn't really matter. We ended up going to Boston. I don't know we just called our doctor and we're like, we're pretty sure she has type one. What do you have any suggestions? I don't even remember what our pediatrician knew did but like Ryan, Paul Johnson, and we just went there. And they got us in like, right away. They were amazing. Yeah.

Ryan 37:15
Oh, yeah. No, our primary doctor told us to go to the hospital. And I said, No, we don't need to go to the hospital. And then she did her sugars at 200 or whatever else. And I was like, I don't think it's that big of a deal. But I understand we need to get a treat it so I was like, Alright, well, I'm gonna call Jocelyn, and do that. And I called them and they were like, literally fantastic. Yeah, when I went in there, and it was like it was it was fantastic. The doctor there just, you know, who was who's an endocrinologist now, who I would recommend to anybody. It really kind of just got the ball rolling. On the test, they did everything. And it was literally within a day. And we're, you know, we're out there giving her shots. And then in the community, which for most people, and even myself being a type one was like, still, like, traumatic, and I remember we had to, like go downstairs to a restaurant to go get food in the afternoon, or when we were leaving at like six o'clock, and I was like, Oh my god, what are we gonna do? Like it was like, so like, stressful and like, just being like, this is all new. Like, I'm used to doing it to myself and it but doing it to your kid is completely different.

Scott Benner 38:21
Yeah, I remember given Arden insulin in the cafeteria of the hospital before we left because we were too afraid to get in the car and drive without food in her that Yeah, and that was the first time outside of the hospital room that anybody had given her insulin and it was a was not a pleasant moment. I I'm wondering do you recall? Or can you come to a consensus on?

You see why I don't do this that often? Who? Who told her? Did you let the doctor tell her? Did you tell her we're going to the to the doctor because we think you have diabetes? Like how did you handle that whole moment?

Jaime 38:59
Do you want me to go? Go ahead. I'm pretty sure we talked about it on the way up and because we had checked her sugar a couple of times and we told her about it once we had decided what to do, which was go to Jocelyn on we talked about on the way up and said you know, we just have to go talk to doctors and do some blood work because you might have what Daddy has, and we just need to take care of your body. So we're gonna learn what, what it is or what the deal is when we get there and and you can handle it and you're brave. And that was sort of how we spun it.

Scott Benner 39:29
Was she just like right on? or was she like, did you have to stop her from crawling out of the window of the car the whole way? Like what was

Jaime 39:36
fine in the car. Obviously the first day there was kind of like doing her first injections was, you know, I'm sure anyone who's been in our position in your position knows that it was those first few days of going from not being a diabetic to having diabetes. For a little kid. It's hard. It was hard. But she's so resilient and so amazing and we we didn't leave our vacation. We went We went back that night and then we went back to Jocelyn the next day. So we had two days in Boston to just kind of get everything rolling and get her information and prescriptions and all that stuff. And we finished our vacation and then we went home.

Scott Benner 40:15
Does Ryan having type one? do you guys feel like that's made it easier for her? Um,

Jaime 40:22
I think she it's not it wasn't as like completely unfamiliar. I guess that would be my, you know, I will I've, from the beginning, we've tried to be really open as far as like, you know, if Brian needs something for his shirt, or like daddy sugar's low, he just needs a few minutes to take care of his body. And you know, she's seen him test his sugar and all that since she was a baby. So I think it wasn't as foreign. What do you think?

Ryan 40:47
Yeah, no, I think the same thing. I don't know if it was easier, or anything else. But she's also like, she's a really good kid in the sense of like that she'd not been that's like a worse way to put it, but she's a good kid. But it's like, it's like, She's like, like, she, she goes with the flow. Like, she's really easy about things. So I think that, you know, in the beginning of it, it was it was really, really hard getting getting pumps on used to be like, do that. The damn clicking that the Omni pod does, like, it's just like, it's like, like those things like really, like, you know, frustrated me at first and then like, within like six months, though, I mean, we, you know, you know, she gets her tablet when she gets gets her pod on and she's, you know, she goes right through it. You know, we did our sensor and or pod today, you know, Jamie just did it for her. And it's like, it's like, nothing, you know, it's not it's not a big deal for right now.

Scott Benner 41:36
It's excellent. That's very cool. All right. This is good. I'm, do you feel like I'm getting through this? Okay. It's different managing two different voices, but I feel like I'm alright. Are you like sitting here going? When am I gonna get to say they're really important stuff. Are you having that feeling? Not at all? Okay, good. Good cheese. Let you guys down. You know, after you jam your way onto the podcast, we get sounds like you were at home, like hatching a plan. Like, I'll send an email, he'll go for it. It'll be okay. Right, Ryan?

Jaime 42:06
I thought I would. And he just did it on his own. So I don't know.

Scott Benner 42:09
Oh, Brian, look at your free will. By the way, earlier, Ryan, Jamie said something and you went, I agree with her. And I was like, That was nice. I didn't call you out in the moment. But I was like, that was interesting. He's like, She's right. She is like to be honest. She is Yeah. See, Ryan's open up one more, baby? Let's see. The hard No, no. I got to agree. The kids are like, they're still here, like, you know, calls in his room, you know, as a junior in college, and I'm like, oh my god. It's cool that you're here. But it's, you know what I have to say, while he's going to having having a kid going to college, you know, from home, which was not what we were accustomed to, obviously, with Corona and everything. And, um, that part sucks. Because you get to see all the like stress that the college brings. And he's like, living through it and everything. Like, I would say that just the other day. It's been like two weeks since he took his finals. I think he's just starting to relax from the semester. And I think he really he hated it. He's like, there's like there was so much wrong with doing it this way. But I, you know, I Joe, I I'm joking, but I would, I am one of those like people, like if he lived here his whole life, I'd be like, Oh, well, sure. He's kind of lame, but it's nice that he's here. Pretty much. I'll just bleep this out later. I'm pretty much like Ryan. So I would just be like, like, oh, the kids. I definitely have to bleep that out. But, but like, the kids are here, and I love the kids here. So anyway, Ryan, I was wondering if you could give me some perspective, this is be helpful to me that you're a type one who likes a podcast about type one made by a guy who doesn't have type one, how do you intersect with all that?

Ryan 44:12
Well, you know what I was actually I was thinking because it really, but a lot of the things that you say and they you discuss and everything else, it's it really is a lot. You know, like I think on a lot of different ways, which I think is pretty crazy that you're able to do that. And the way that you you know, the way that you know when when I started listening to in, you know, Jamie's like, Oh, yeah, he talks about being bold with insulin. And I'm just like, I'm like, Oh, that's a cheesy thing to say, but I'm not I'm sorry. Yeah, you should probably leave that out to Scott. But

Scott Benner 44:43
it's a cheesy thing to say. And by the way, didn't even start off as if to give you an I don't want to cut you off. It was the title of an episode. And then people started they get popped up as a hashtag. And after I saw it a couple times, I was like it those words couldn't have gone together before I put them together. Very Recently, that would be odd. And I started backtracking. And it was just like, Pete, that's what people took from Episode 11 of the podcast that they should be bold. And I was like, all right. And I kind of like you, I was a little like, geez, that seems like a T shirt. That's not what I was going for, you know, but then I leaned into, and I was like, This is what people are, are reacting to them. Why would I take that from? So?

Ryan 45:22
No, I hear you. And I 100% agree. And then again, I started listening to it. And like, you know, the way that you that you manage the blood sugars and the way that you look at things, and the way that you were, you know, kind of looking at the graphs and doing that kind of stuff, it really was, I was really amazed by you that you were able to take all that information and put it into somebody else, because you don't even know how artists feeling you don't you know, you don't, you don't have all that kind of concept of like what the actual body's doing, and all that kind of stuff, but you're making it work. And I think your your overall goal of the you know, being healthier for a longer period of time, by being bold is is 100%, the idea of diabetes, type one diabetes, and that's what needs to be broadcasted out there. So that's how I intersected with it, how I thought but as a, you know, as a type one, I mean, I just, I think a lot of the stories and a lot of the people that you bring on and stuff like that are there is really interesting. And it's nice for me, I don't have a lot of I don't have, I don't have anybody who has type one that I'm like, really personally connected to or anything like that. So it really, it's nice to hear about other people and what they're doing. Oh, that's cool.

Scott Benner 46:31
I appreciate you sharing that with me. Because it's, it's, it's, it's hard for me sometimes, because I don't get a lot of feedback, like this is just my assumption of what would be valuable to people. So, but I did like the part where you basically called me brilliant for figuring out diabetes without having it. So I let you talk. I'm like an idiot savant of diabetes, basically. So I'll tell you, it's completely motivated by Arden. And she'll probably never realize, or maybe it'll take her years to figure out that my concern for her is helping her and so many other people, like, I don't know, if she'll ever realize how many people she's helping. You know what I mean? Like, I don't know if she'll ever figure that out or not, or if it just won't occur to her that way. In the exact same way as that, you know, a person who listens to this podcast is an editor at Newsweek, right? And therefore, I can say this now, because I won't come out then one of the there's going to be a while you guys are like the only ones that know this, don't tell anybody this, please. So there's going to be a cover story on Newsweek, I think, at the beginning of the year of like, technology that's coming in 2021. And the Omni pod five is part of it, which is a big deal for them. And and, you know, it would be a big deal for any company who would get on, you know, in a situation like that. The way that happens is a person who listens to the podcast says, Well, I think this is one of the things that I'm really excited about. They happen to be in an editorial position, you know, to give some some opinions at Newsweek, that person contacts me, I put them in contact with somebody on the pod who says, Sure, that would be great. You know, here's some, here's the information you need that you're asking questions about. And that ends up there. And after all, that kind of happened behind the scenes. And before the magazines come out, the person from Omnipod sent me a note and said, Hey, I really appreciate you, you know, making this introduction for us. And it was the person thanking me, the person thanking me was the person who bought ads on this podcast before anyone was listening to it. And I told her, I said, I don't forget people who have had my back. And if you can, believe it or not, the before this podcast began, it started on a phone call, where on the pod I used to write for their blog. And they were contacting me to see what I was interested in writing for the upcoming year. And I kind of had the nerve in that meeting to say, I don't want to write for your blog anymore. Please take the money you give me for writing and buy ads on my podcast with it instead. And that'll be enough money for me to get this off the ground. And my goal is I want to help people. And I think if I help people, that'll be valuable for you, because it'll be you know, brought to you by Omni pod, like, you know, you'll get a little bright sunshine from it. And all these years later, that still did something positive for Omnipod. This one nice thing this one person did, coming up on like eight years ago, you know. And now you're going to pick up a Newsweek magazine and turn to a page inside and they're going to talk about the on the pot. And I just think of Arden in the same way. Like I wonder if Arden will ever realize that 10 years from now, some kids going to get diagnosed with diabetes, they're a onesies, never really going to come out of the sixes and they're going to live a completely different life than they would have. If Arden didn't let me talk about her diabetes on a podcast and To go back further, if a lovely woman at Omnipod wouldn't have said, Yeah, give him the money, and let's see what he can do with it. So, there's a lot of people that touch this, you know?

Jaime 50:09
Hmm, that's awesome. I can't wait to read it.

Scott Benner 50:12
Now. I will hopefully it'll be a great story. But yeah. Oh, you know, I didn't need to talk that much. I was when I was

Jaime 50:19
okay. Um, so we can't really talk about it. But you probably would like to know that we are doing the horizon study.

Scott Benner 50:27
Well, well, well.

Jaime 50:30
So, yeah, we're not really because we're still actively participating, and we're allowed to really talk about yet, but we'd be happy when we can. Cool.

Scott Benner 50:43
Yeah, let me know when that's okay. Ryan, we don't need him. And Sutton. I'm just kidding. Ryan, are you seeing things in the Omnipod Horizon study that are making you interested? In Are you or are you using an algorithm with tandem right now?

Ryan 51:01
I use the tandem.

Scott Benner 51:03
Are you using control iQ? Yeah. And how's that working for you?

Ryan 51:07
Fantastic. Yeah. Yeah. Tell me it's not, you know, none of them. You know, they're not 100% you know, in any sense, you know, you're not going to, I feel like people have this idea of like, Oh, I just, I don't really need the Bolus anymore. I just need to, you know, just need the pumps is going to do it for me. Like, that's, I just heard people like talk like that. It's not like that at all. But it definitely, like, overnights are like so fantastic. You know, they they make it so much easier by doing that. It's it's really, I don't know, it's a really good system.

Scott Benner 51:38
That's excellent. I may have messed up the on the pod study a little bit. Because parent of a child, who is in the study, found the podcast as they were getting into the study. So they wanted to make all these aggressive moves with insulin. And the study coordinators were like, Hey, could you leave it alone? And she's like, no. Such. So she kept like, turning knobs and got real, like stability. It was it was Oh, hopefully they learned something from it from Oh, believe me, believe we,

Ryan 52:06
I there's nothing that would not make me turnips, if that makes sense. But yeah, it's uh, there's no, there's no doubt about it. Like I you have you control things, you know, what I mean is still you still have to do what you need to do to make it happen.

Scott Benner 52:21
I took it as like a real parent parental love thing. Like she she found something and it said to her, if you just do this, this stable blood sugar that you're seeing at one, whatever is going to come down. And she just didn't have the heart not to do it. Like even, you know, for science or for anything else. She was like, Look, you can recalibrate, you know what you're seeing from us after we make these settings changes, but I'm not I'm not gonna leave my kids blood sugar like this. And it all worked out like she was she stayed in the study, you know, it was fine. But it was interesting, because she had to fight a little bit. She was really tough. I remember talking to her. And she was a she was definitely you could see what where the phrase mother a mother's love comes from. But Brian, to your point. I think this has been the interpretation from people who don't have an insulin pump for ever. Like, oh, I'm going to get the pump, the pump will come and then everything will just be automated and easy. And I won't have to do anything anymore. That's always what people think. Yeah, you know, yeah, but yeah, I mean, listen, Arden's been looping for like a year and a half now and algorithm based pumping in my opinion is is the way forward for now unless they come up with something better it's it's markedly better than anything I've ever been able to do on my own not that we couldn't get this we were getting the same results The other way you know the way that I talked about on the podcast but it's less work and overnights you're 100% right or just kind of magical

Ryan 53:54
Yeah, yeah. No it's that's a that's like a huge relief for I think any parent of a child what they want I mean, it's the overnights were always stressful when we first started with everything. But again, we were lucky enough like To be honest, like always been lucky enough to have the CGM they pretty much this whole time. So it makes it it makes things so much easier. And I was totally against CGM for a long period of time because of how much they like sucked for a period for a while. But you know, there's no there's no way around it now.

Scott Benner 54:26
Yeah, the the leap from Dexcom What was the G Dexcom? Seven, seven.

Ryan 54:34
I never had a Dexcom until, until like the last two years. I was all because I was on the mini med pump. So I always had they use their crappy ass sensors. And that was that was always just so awful. I hated them so much.

Scott Benner 54:49
It's not my fault, Medtronic that people don't like your stuff. Go ahead. What was that? No, I

Jaime 54:54
was gonna say but like Ryan to the point of the Dexcom like You know, overnights as a parent, obviously, like, those are really great. But they're also really great as like a spouse. Like, I feel like Ryan's overnight lows are like almost. I don't know, not not non existent, obviously. But there's so much better and I feel like, Ryan, you shouldn't be done this, but like, I feel like you're feeling your lows has improved drastically since you don't have the depth on?

Ryan 55:26
Yeah, no doubt, no doubt. I mean, I, I felt like control has been so much better

Scott Benner 55:32
taking your variability away, you're not bouncing around as much.

Ryan 55:35
No, I think by you know, by their very abilities, like a belt, like a it's about like a 3035 it's usually about the center deviation on things. You know, in my, my a one sees are like about, like, you know, 5.5 5.6 right now, and they've been that way for the last, you know, year or so year and a half so, and I never really was above, I was never really above like 6.3 really overall, but bringing it down that much more is just been and I couldn't have done it without the Dexcom like to be honest with you. It's it's just it's, I don't know, it's the definitely the best thing that I've done in my diabetes.

Scott Benner 56:11
I thought it was interesting that when it came up, you talked about it as a perspective of a parent Ryan and then Jamie felt like I was gonna, I was gonna say, you know, because you talked about overnights for parents, I was like you can't forget about adults who have you know, who lose sleep and sit up and you know, have to mess with a blood sugar to four in the morning, then get up at 630 and go to work. You know, we're getting up at 630 and be a parent and then I'm just like, well, I can't tell him not to forget he has diabetes. And I was like, I wonder how I can get back into this conversation. Jamie, you just did it. So thank you very much.

Ryan 56:42
That was excellent. You can only tell me that's okay. It's completely fine. I forget things all the time. But it's uh, but again, like, if it's yourself like you don't think about it like I don't I think about it more for her. You know, I'm worried about her. It's not like with me, like I'm so used to dealing with that stuff. It's like not the I don't know, if it's a part of it's a part of life,

Scott Benner 57:00
the way you answered it is not unexpected, because, you know, people always worry about the people they love more than they do about themselves. But I think it's interesting, because you're talking about a low six to a mid five, you would think that's not a big deal. Like a low six is probably like a 120 average blood sugar like right in there. And a mid five is more like it's still really more like a 90, maybe like a 9095 budget. You know what I'm saying this as I have this amazing calculator that somebody bought, somebody built for the podcast, that I could just pull up instead of acting like there's no way to know. So what I'll do is click on a one C and type 5.5.

Ryan 57:42
And I can I also tell you something is that when we were when we started this study, they were it was it was very interesting, because I took they took a one C and she was at I think it was a 5.4. And I was like, Oh, I don't know if they're gonna accept her into this study. Because I feel like that's pretty pretty on point with things. And she was only she was in like low less than 1%. You know, so I mean, it felt really good to have that. Can you tell me if the study is keeping her where she was? What do you mean? We're still in the study?

Scott Benner 58:15
Yeah, no, but is there a one c staying similar?

Ryan 58:18
Ah, so you know, so it's about I don't know it. I don't know how much they can say about it. But I mean, her he wants to her last day when she was was. I think it's like five point I think it was 5.6 maybe 5.5? point six?

Scott Benner 58:33
I think it was exactly? Well, here we are 5.5 a one sees an average blood sugar of 111 or 6.2 if you're in Australia and other places. So to get to 6.5 is actually an average of 140 to 7.8. So Ryan, had you been a 6.5 and then gone to a 5.5 you took you took almost 30 points out of your blood sugar on average. And that's amazing. You know, to me like that's the for your health. That's a huge thing. It really, it's just fantastic. I agree with you. I don't know why it's it's not fair to say I don't know, I do know how good I'd be at diabetes without a CGM and how good I was with and without it. I'm definitely better with it. For certain and all the things that you earlier said, like, I can't believe you figure that stuff out. It all came from looking at a Dexcom CGM. like looking at the data and seeing cause and effect that That to me was the was just, it was the biggest thing. Like I was like, Oh, I did this here. And this happened. I wonder what would happen if I slid it over or made it bigger, you know, a little more insulin a little sooner. And then I just kept fiddling with it. And then one day I was like, Oh, this is the spot. If you see me speak live somewhere. There'll be times I'll tell you about going to a doctor's appointment with ordinal years ago as Dexcom was just coming out. And Arden's nurse practitioner asked us if we were getting one I didn't I had never heard of it before and didn't know what it was. Then she told me this simple story of like this 18 year old boy in the practice who loves m&ms but can't figure out how to Bolus for them. So he got a CGM and went out and bought like a grab bag like a hand, like a hand sized bag of m&ms. He bought like a week's worth of them. And the first day just Bolus, and his blood sugar did everything it usually does. So then the next day, he gave himself more insulin. And then he kept doing that for a couple of days. And then one day, it made him below. Like, he popped up for a second I got low, and then that made him start messing with the timing. And she said, By the end of the week, besides getting to eat a lot of m&ms, he figured out where to put the insulin and where it didn't spike. And he didn't get low later. And I was like when she said that, I was like, Well, if that kid can do it for m&ms, I could do it for everything. And I was like, Yeah, well, we'll take I

Ryan 1:00:45
think that's the greatest point. It's like they like you think about that is like, I don't know how old that kid was. But like, like, that is something that has made that kid grow and do something that you know, most people who have diabetes, I don't know, don't even you know, don't even think about sometimes, you know what I mean? Is like there's a kid doing that. Like, of course you can do it anybody

Scott Benner 1:01:05
can do 118 year old motivated by wanting to have candy. And, and he motivated then the story of him motivated me to like, I was like, I wonder if I could just do that with every food. And then once I figured all the food out, then there must be similarities. And then and that's how it works. Now like, I have to tell you, uh, you know, even though Arden's looping at this point, I still like I used to just look at a plate and go seven units do seven units do Oh, pancakes, oh my god, do 15 you know, like that kind of thing. Now I just looked at it, and I go, what's that? pancakes Oh, do 100 carbs. It's the same thing. It's just I just, you know that I reversed the math in my head. Like instead of thinking of it and in units, I think about it and carbs so that the loop will do the right thing.

Ryan 1:01:52
Oh, I do it definitely by the units as well. Yeah, that's all it makes. I don't know it's easier for me. But I agree. It's the same thing back and forth. Now.

Scott Benner 1:02:00
And and when something goes wrong, like I messed up pancakes the other day, I think it's why it's in my head. And it was the was not enough Pre-Bolus like I used enough insulin had the Pre-Bolus been longer. But because the Pre-Bolus wasn't as long as it needed to be I should have added four units. And by the way, that's not math for anybody. That's just what I know about Arden. Like, don't just think four units is the magic pancake fix because that's not how that works. But as soon as I saw the arrow spin up, I just sent our gitex I was like Bolus for more units like now. And we opened the loop Bolus for unit stop the rise, brought it back down, close the loop up and started right over again. So it was that but that kind of stuff now, I don't even really have to think about and and I think everybody can get to that spot where it's not overwhelming your time. Like when I see like old school diabetes, people who've been online sharing about their diabetes, you know, for decades upon decades, I sometimes feel badly, because I think they got caught in a time where the sharing was about how hard it was and what went wrong. And that became their brand. And it still seems to be Do you know to me, like when I see somebody with type one who's got who's had diabetes for 30 years, who's in their 40s going like, Oh, I can't believe I'm bouncing all over the place today. Again, this makes me feel so sick, blah, blah. I'm like, you really haven't figured this out yet. Like Like, you know, like you could figure this out. Like you're almost willfully not figuring it out now or you've just deluded yourself into believing it doesn't exist and other life doesn't exist. But your blood sugar does not need to go from 50 to 300 to 60. Like it's just that doesn't have to happen. You know, you can you can get on top of it a little better than that. And it's not unknowable, and sometimes they act like it is. Did you ever have time Ryan where you were just like wildly out of sync with how to manage?

Ryan 1:03:58
Guess 100%

Scott Benner 1:04:01
Wow. But you wouldn't know what it looks like because you didn't have a CGM, right.

Ryan 1:04:05
Hmm. I had it with both both with without a CGM. And with the CGM. Again, I've gone through periods of different things and you know, you know, I think like, you know, alcohol has a big thing to do with it, how you eat, where you're, you know, where you're kind of motivation is, and again, when you're in your 20s I think it's different. You know, you're, you know, you kind of feel invincible you kind of feel like you're you can do whatever so, I think that was part of part of me. So, yeah, and I just didn't, I didn't, I didn't, I felt like sometimes you feel like you know, you feel like insulin is somewhat can be a burden and it's just like, I don't feel like dealing with that right now. And you know, I know I'll be alright because I got the basics down, right. You know, if I, I know I'm not going into the the 30s or whatever else but I have and I've done it over and over And, you know, you've had to have, you know, Jamie's had to call an ambulance to say like, you know, wake them up, you know, and do that kind of stuff. So I mean, that's like, those are things that have that have definitely happened to me. And, but it's, it's just something that you learn from and you can't look back on the past you just kind of going to go forward and really kind of, you know, dig into it. So no, no,

Scott Benner 1:05:25
no, it does. And I think it's a big deal that you were able to do that too. Because like I said, I'm not, I'm not calling anyone out. I've seen it in my personal life with friends and online. But there are times where if you've had diabetes for too long, you just get stuck in the idea that this is what it is, and there's no fixing it. And you throw your hands up in the air, but you got me your your mid fives now you you know that there's another way to? That's really cool. Jamie, are you there? Yeah. What was it like calling an ambulance for Ryan?

Jaime 1:05:55
I mean, it was really terrifying.

Scott Benner 1:05:57
What did you think was happening? I'm sorry? How did it feel? Like What Did you feel like? What's happening to him in the moment?

Jaime 1:06:04
You know, Ryan, I don't know, like, you can talk about it. So I just want to respect your privacy. So there's, there was a few times he had a seizure once and that twice, actually, those were really scary. So I've called him and I've also administered Google gun, which is like, really hard to do, and your hands are shaking like crazy. But, you know, it's sort of hard because, you know, I don't even know how to answer that question. It's terrifying, because you don't want to make the call the wrong call, right. So I know that kind of stuffs for him in the sense, you know, sometimes it takes a little bit, and then you wake up, and you can take care of it. But you know, those times in my opinion, and whether he agreed with me or not, doesn't? Yeah, I don't know, I didn't always know. So, but I would rather him be safe. So. So they were terrifying. But we haven't happened in a long time. And I feel like his, his care in general has evolved so greatly as has our relationship and both of our understanding of, of diabetes together. Like it's, at the time I like, it was so hard and so scary. And you know, it's a little traumatizing, I think, for both of us for a while, but I feel like we've learned so much and come so far that I can load on it now and not, and sort of be like, grateful that we're on the other side. And, um, yeah,

Scott Benner 1:07:29
I listen, I've had I've seen art and have to seizures. And it is, you know, it's horrifying. And I'm hearing from you that there's a an extra added consideration back then. Which is Ryan about the pop up awake and tell me I shouldn't have called 911. Is that like, like it like making the decision too soon? So you have to deal with that on top of everything else that's going on?

Jaime 1:07:54
Yeah. I mean, I want to be clear, like, it didn't matter more to me to keep him safe and make possibly the wrong call. Like, I think that's the better way to deal with it. In this these particular instances, but you know, anyone who has, I think in general Orion, I would say that, like for a while, I wouldn't feel his lows, like for a while. And I think that is like the greatest and best thing that has changed for him. And so sometimes, and again, in our younger years, like, I think when you have a low blood sugar, you can be kind of confused and kind of like distrustful because you feel weird. And so that could be like a really hard element of it of always knowing, you know how to trust your gut as far as like, doing the right thing. And I don't think that element even exists anymore. I feel like we sort of just know and trust each other and there's no, do you know what I mean? Right?

Ryan 1:08:50
Yeah, no, I think it's Yeah, no, it was just again, I think it was just a different time. And they think, yeah, I know, then, you know, again, like, I feel bad about some of this stuff, too, that I put it on to Jamie, like, you know, and, and that's like, where I've always tried to, you know, you know, kind of keep it to myself to be like, No, I'm managing this, nobody else has to do anything or whatever else. But it also kind of enlightened me as well as that, you know, I can use some help with things as well. So that's really good. But you also did hear Scott on there that she told me that I evolved that was pretty impactful as well to me.

Scott Benner 1:09:26
I don't know. I heard it too. I thought a lot of insightful stuff. God said in the last three minutes. I'm being serious in case I seriously think that was one of the best moments of the of the podcast was what we just got talked about there. It it's very illuminating for other people listening and that you, you know, if you ever want to, like really understand the, you know, the interplay of like a marriage of any kind, like Ryan doesn't want to put a problem on other people, buddies, but if he gets low and doesn't realize it and can kind of become belligerent. He's putting a Different problem on other people, but it's just that we all want to protect our loved ones so badly. You know what I mean? Like, that's what I heard is Ryan wanted to protect you from having to be responsible for him. And, you know,

Jaime 1:10:12
sorry, I just and I have always like, pushed for and like, want everyone, I you know, I just as a as a partner, and as a parent of someone who might someday want a partner like, I don't any you like, Ryan, you and anyone with type one, like you are not a burden, like your loved ones want to be there for you and help you and they would rather be able to help you on the front end and make you feel bad on the back end of Alo that went terribly wrong has not, you know, happens, like, you know, I mean, I just, that was something that I always really, really hoped that we all like would can understand. And we do now and you know, it's just none of no one is a burden when type one and I just actually thought there was like an episode I was in, I don't listen to them in order because my kids are two and five. So the amount of time I get to listen is like very random. Yeah. Um, and so I started with like, a lot of the technical episodes, and then I sort of scattered depending on what my mood was, and I listened to, there was one of your after dark episodes when I heard a guy talking about his ex, like making him feel about wearing a device. And I just was like, so horrified. And I just, if a person will tell you, one has someone who is not in their corner or like, ever make them feel bad about a single thing like they're those people are not for you. They're not your people. Yeah, you know what I mean? I agree,

Scott Benner 1:11:38
I tell you that I think if my friend Mike would have adopted that attitude, he might still be alive, actually. Because I think he tried so hard to not show people as diabetes that he didn't take care of themselves. So I think it's great that Ryan did it, and that you put like such very kind words to it for other people. If you have type one diabetes, and you're around people who are making you feel bad about it, or you don't feel like you can share it. Those aren't your people. I think that's a great way to put it. No, thank you for that. That's great. I mean, it would have been better if this kids were making so much goddamn noise, Jamie but No, I'm just kidding. I just had to break up the seriousness that's I don't need future Ryan crying in the goddamn grocery store. Right now, Ryan? No. Can I Can I finish by asking you how you felt about hearing her saying that?

Ryan 1:12:40
No. I mean, it's, it's awesome. And I know that we've already learned that we've talked about this stuff. So it's not this is nothing. This is nothing new for me. And I, you know, I appreciate, you know, Jamie, in every sense, and she's always been in my corner. And that's, that's, you know, I

Scott Benner 1:12:54
could only hope for that for somebody like that for for Ellie when she's when she's older. So you know, that's, that's all I can. That's all I can say about it is really, you know, Jamie's always been there, you know, and she always will be, I have to tell you, talking to you guys makes me crystallized that my next. My next great trick needs to be to pass this to Arden. And I've always known that and been trying to do it very slowly. But I think we're getting to the point now she's 16 and a half. And I mean, she's taking, but I just set her up to take her sh T's yesterday in our acps. Like, I don't want her care to devolve because she goes away to college. I don't think it needs to. And I think there's a way to do it. And I think there's a way to do it and share it at the same time. I think it might be one of my, maybe one of the gifts I can leave on this podcast is this, like an open conversation about how to do that. So that so that, you know, because you hear the adults that Come on, they just say the same thing that they also like, you know, well then there was college, and then I pulled it together like like, just like well, you know, there were four years where I almost died a bunch of times didn't really care about my blood sugar. And then I realized later that I shouldn't do that I want there's got to be a way to not do that. You know what I mean? In a way that that kids can still go to college, you know, so

Ryan 1:14:13
I think there's like and again, like I my belief and again that you know, at least only five so i don't i don't know how we're gonna go about the next Jesus. I don't know, you know, I don't know, we're gonna do tomorrow, but I you know, I don't know how we're going to do the next you know, 10 years or so. But you know, my thoughts are just kind of educate her as much as possible on it so that she feels comfortable with it. So she feels comfortable. I feel like you know, and then building that trust with it as well so that you know if, you know she went to a party and she got drunk and her blood sugar's dropping late, you know, it's okay that I call her and just be like, Hey, what's going on? Like, you know, your sugar is going really down or a friend picks up and just be like, hey, you need to do this and and and make that be okay that it's that something that you know that she feels comfortable with? To be able to reach out when she needs it

Scott Benner 1:15:01
now Yeah, we've got a you've got a, I have to we all have to write find a way to make their normal progression through that time when their brain doesn't work. So well still still mean healthy as far as their diabetes goes. And I think it's doable. And I'm going to try to do it. So hopefully it'll work out and we'll talk about here on the podcast over the next number of years. Yeah, that that. It's really insightful. All that was you guys are terrific. Thank you very much for doing this.

Jaime 1:15:34
Thanks for letting us invite ourselves on your show.

Scott Benner 1:15:37
to prom. Let's see for people listening. You're like, I wonder how you get on that podcast. You just badger the guy and he lets you on. If he thinks you're interesting. Oh, by the way, should we call this episode Ryan and Jamie say a lot. Probably. Jimmy, where are you from? Originally? I'm assuming Boston, which is why you're there. Where are you from? Originally? Like, where are you from?

Jaime 1:16:00
I am from like New York in Connecticut, actually.

Scott Benner 1:16:03
Okay. Okay. And and Ryan's from Jersey. And you guys just made it more towards Boston? Yeah, cuz neither of you sound like you're from there. But you sound like you live there. In case you're wondering. What does that mean? You know, I get called up here. I don't mean like that. Not just sounds like you

Ryan 1:16:24
shouldn't even do it. You know, I got the jersey thing going on. You know, I'm from South Jersey. So you know, it is what it is.

Scott Benner 1:16:31
Brian here from Philadelphia slightly east, right?

Ryan 1:16:35
Yeah, yeah. Yep. Yep, exactly.

Scott Benner 1:16:38
Yeah, up here. If you're down far enough, nobody thinks you're from New Jersey. Just so you know.

Ryan 1:16:41
No, I believe me, I know. I'm from I'm I'm from like, you know, we're from Pennsylvania. That's how people say, you know, so or from nowhere, one of the other, you know,

Scott Benner 1:16:51
one of those in between places. Anyway, you guys were seriously terrific. Is there anything that we didn't talk about that you would like to?

Jaime 1:16:57
I just think one question, and I know you probably have to go, but I'm just I just can't go on forever. Jamie. No, I know, one of the fun. Um, so I know the Arden was like older and you'd always didn't have a CGM. So I was kind of wondering like, when did you start being bold? Because like, we definitely tried to be bold when we can, you know, hashtag bold of insulin. But like, I also feel like with younger kids, I mean, I feel like you could do a whole episode just on like the variables with little kids. So like, when did you sort of start?

Scott Benner 1:17:28
Well, I'm a I'm a bad measuring stick because the technology didn't exist when I was younger. I managed Darden for a long time with syringes, and a freestyle meter that was about two inches long. That's all I had. So the measuring stick, the best that I can offer is the people who listen to the podcast who I've had direct contact with, who have little children. Now those people all seemingly have CGM. But I'm watching people with infants and toddlers. Keep amazing blood sugar's without frightening lows. So it all depends on how much the stuff that you hear on the podcast makes sense to you, I guess. Yeah. You know what I mean? Like, you don't just, you don't I mean, like, if you don't put on three of the five lug nuts and take off, just like this is enough, we'll be okay. Like when you but when you really feel like you've got the car, and it's dialed in, and it can handle the speed, then you go out and see what it can do. Right. And I think that's how people listening do I get to look at people through the Facebook group and, and see their different situations, and I get to talk to people privately, some people pick it up quicker, more quickly than others. But I think that I'm trying, I don't think I am trying to hone the idea. I said it's in people's minds, Basil first, then figure out Pre-Bolus thing, then figure out like glycemic load and index so that you can make good decisions about how much insulin different foods needs, then you need to learn how to correct blood sugars that get out of whack without getting low. Like there's, there's these steps that you can take the you could take it any age, and to say that basil first, whether you're a year old, or 10 years old, that's just it right there. Nothing in my opinion, nothing else works when the basil is wrong. And so it's basil first. Then you figure out like I had a lady sent me a chart today. And it's just like, I don't know what's wrong, my kids almost no carbs, she's like, 20 or 30 carbs a day. And I looked at and I was like, she doesn't Pre-Bolus her meals. It's just obvious. So I said, Do you Pre-Bolus she was well, when I can. I'm like, well, that's your problem. Like, I mean, your basil looks okay. Her Basal not great. But her Pre-Bolus is are so bad. I can't tell what our Basal needs. Like so, you know, and so, I think that I mean, it's it seems like self serving, but I think it's 400 Ours at this point, but you could sit down and listen to this podcast and come out the other side of it as good at this as I am. Like, I think that's what the podcast is for.

Jaime 1:20:08
Right. And we have like, we've we've taken a lot of a lot of steps in a hurry. 123 like, and I think her, her management is really great. I just was kind of curious about like,

Scott Benner 1:20:19
I don't know, ask me a direct question. I'll answer.

Jaime 1:20:23
I don't think I have one. Which is why it's not coming across very well. I was just kind of wondering when you started like, but again, it's sort of hard to compare what we have now to what you were, we're working. We know

Scott Benner 1:20:33
Yeah, me now and me, then are not the same person. Right? Me then is how you got me now. That's how bad I was at it. I was just terrible at it and didn't want it to be terrible. So I fit so everything you hear me talking about now that like it's all like just do this, or I did that like this is this is me with a just a scan of top of hindsight and focus and paying attention. And now I'm just trying to put it out there so that this becomes the normal way people talk about diabetes so that everyone else doesn't have to be the terrible me. You know what I mean? Because Because before diabetes management was this thrown to the wolves, sink or swim, the lucky survive. That's how it went. And that was just how doctors did it. And that's it was all okay with everybody. And only the people who did well got to talk about it online, and everybody else just put their head down. And that was it. I don't think that has to be that way for anybody. I think even if you don't have a CGM, getting your basil, right, is doable. You could test a lot for a couple of days and figure it out. And you know, seeing things and reacting to them like in kids growth, or as an adult, like big changes in exercise, or how much you're moving around during the day, like being aware of those things. So that you don't spend three months going, I don't understand why my blood sugar's low, like, you know, like so that you so like, it happened to me recently, like, you're gonna hear about it on an episode that comes out in a couple of days, Arden got sent home because a COVID. And her basil needs dropped significantly, because she wasn't. I'm thinking partly moving around so much at school and partly dealing with the anxiety and stress of the day. And her bit her basil went from one point to 2.9. So a lot, you know, and, and so I think once people can see those things, you can kind of stay flexible, and and make the adjustments along the way. But I don't think there's a I don't think at this point that I see just some like black and white. Here's the 10 bullet points. These are the answers. These are the numbers just do this. I think the answer lies somewhere inside of this podcast. And I hope like the defining diabetes, and the pro tip episodes help move people along more quickly. Because it just at some point, I realized I was like, I can't tell everybody just start listening from the beginning. You know, you'll figure it out. So I think the way you're listening is how most people are gonna end up listening.

Jaime 1:23:02
Yeah, I mean, that anyway, I mean, obviously, I mean, it would be great to start from the beginning. But no matter like how you do it, the information is just like, I don't even know the right word. It's just like, absolutely priceless. And if you can, I think I just started with like learning about 10 failing, and then bumping and nudging, and it sort of evolved from there. For me, for somebody who did not operate a bump before that. And I just it has made such a difference in what I just understanding the impact of those small, those small actions. And they made such a big difference. And it's just been great.

Scott Benner 1:23:39
Thank you. I think this podcast might be one of my only real, like, adult accomplishments, actually. So it's been one That's nice of you to say, I, I just, I don't know, there's no other way to say it, I figured out how to do diabetes, and within this podcast somewhere is your answer. And everybody's going to come to it a different way. I just learned from talking to so many people that there's no canned answer. And when there's no canned answer that leaves me having to sit in the room like you know that the the fortune teller behind the glass and I just have to sit there till somebody puts their quarter in and then tell them what to do. And I that's not a valuable use of my time. I can't I can't help there's I could help people one person at a time and I've done that in the past. But that leaves you helping a dozen people a year. And I like getting a dozen emails a day like and I'd like to figure out how to make it more because you know the success of the podcast is directly correlated I think to the outcomes for people listening. I don't know I don't think that answered your question but it did add 10 minutes to your episode. Very, very shrewd. Jamie very sure. All right. Well, guys, you guys sound like you have a terrific family. I'm jealous of your relationship. You do sound very blended and and together as one which is very Yeah, we're get it. Yeah, it sounds like it, honestly. Alright, I'm gonna I'm gonna stop the recording of that I'm gonna tell you something. So the number 37 is funny because

a huge thank you to one of today's sponsors. Je Vogue glucagon, find out more about chivo Kibo pen at G Vogue glucagon.com Ford slash juice box, you spell that GVOKEGL Uc ag o n.com. forward slash juice box. I'd also like to thank the Contour Next One blood glucose meter for being such a great, great supporter of the Juicebox Podcast and for making really great blood glucose meters. That's the thing we really care about. Contour Next One comm forward slash juice box. If you're enjoying the show, please share it with someone else. That's how it grows and how it stays so relevant. So you have the show and you're like, I like this podcast and you find somebody else who has diabetes you got to have I told you about this podcast. Or maybe you're like, hey, Doctor, would you like to know how I got this a one c Juicebox Podcast, so share the show. That's the best way to support the podcast. Thanks so much for listening. I'll be back soon with another episode.

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#525 Ryan and Jaime

Ryan has type 1 diabetes, he's married to Jaime. They also have a child with type 1.

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

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

Scott Benner 0:00
Friends Hello, this is Episode 525 of the Juicebox Podcast.

On today's show, we're going to be speaking with two people, Ryan and Jamie, Jamie and Ryan are married. One of them has diabetes, they have two children, one of those children has diabetes. This is their story. Can you imagine if I was like, This is their story. Anyway, I thought this was an interesting conversation. And I felt like you might want to hear it as well. So now it's a podcast episode. While you're listening while you're listening, while you're listening? While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. I've discussed it with the editor and we're going to leave all those mess ups in the show. So you know, I feel like a human being to you. That's the important thing. I just feel like I'm one of the guys and I make mistakes too. Which I do all the time. I just I'm way too lazy to edit that out. So

this show is sponsored today by the glucagon that my daughter carries, g vo hypo pen. Find out more at G Vogue glucagon.com forward slash juice box. The episode is also sponsored by the Contour Next One blood glucose meter. Find out more at Contour Next one.com forward slash juicebox. Battling push record again, what was that now?

Jaime 2:01
Well, my time wandering video just for the recording place. I said I'm sampling we're talking I'm so excited. I'm excited as well. It must be like weird for you. Because everybody feels like they know you. I get a lot of messages talking to everybody else.

Scott Benner 2:14
Yeah, I get a lot of messages that are written to me. Like my mom writes to me. It's like, Hey, baby, is everything okay? Like, you know, we don't really know each other. My favorite is, and I brought this up yesterday with somebody I was talking to, is that people will correspond, and then you'll go back and forth with them a little bit. And sometimes, I guess to them, it probably seems like a lot. I wish I don't want them to feel like it doesn't feel like anything to me. But I have a lot of those conversations. And so they're meaningful in the moment, but I don't recall them afterwards. And you know that I'll get a follow up message, it'd be six months later be like, hey, check this out. I've changed the basil and everything's good now for her. And I'm like, I'm sorry, I don't know who you are. Who is her? What are we talking about? Like, you know, because then they start, they start talking about diabetes stuff. As if I'm five seconds beyond when we stopped talking, I think the way they probably are, which is great and understandable. But I'm not there anymore. I've talked to 1000 people since then. At least you know. And so it's just like, it's like, I don't know what you're saying or who you are who you're like, you'll have to read like, please don't like make me. Like just tell me that that's my here. If everyone's listening, here's my message. If you're going to send me a message and then send me another one later, act like we don't know each other so that I don't have to scroll back up in the messages and figure it out. If you want to make my life better. Keep me from having to scroll up. That would be amazing. Seriously, yeah, that's it seems fair, right? Absolutely. So we feel good. I do. Do we care about Ryan or? No? Yeah. No, I just meant Jamie's gonna cut you out of this pretty easy. I can see.

Ryan 3:55
There's no doubt.

Scott Benner 3:59
So why don't you guys go ahead and introduce yourself in order of importance. So Jamie, you go first.

Jaime 4:04
Okay. My name is Jamie. I am married to Ryan. And we have two daughters and our oldest who is five was diagnosed with type one. My poor her first fourth birthday.

Scott Benner 4:19
How old is she

Jaime 4:19
now? She's five now.

Scott Benner 4:21
So about a year. We're not? Yeah, it

Jaime 4:24
was July of 19.

Scott Benner 4:26
So you're not even giving yourself any credit. You're a year and a half in already?

Jaime 4:29
Yes. Ryan, obviously I'm married to Ryan, and he will do his own spiel. But we've known each other since we were 20 How old are you

Scott Benner 4:37
now? How old are you now Jamie? I'm 37 Oh, wow. Nice seven years you've lived in a row. That's a lot. That's a by the way that's a clerk's joke for only people have ever seen the movie clerks. No one else will get that. Ryan Go ahead. What about you?

Ryan 4:55
So I am. So I'm Ryan. I was I was done. diagnosed with type one when I was 16 years old. I'm also 37. And yeah, and Jamie's lived known me for too long for her own good. You know, she's like a saint because he's lived with me this long. There's no doubt about that. But, but yes, and we've, you know, we have two lovely daughters and one of them is Type One, two. So we're learning, I'm learning from a different side of things as of recently,

Scott Benner 5:29
so Okay, Brian, how old were you when you're diagnosed? 17 1616 and you're 37. Now, that's over 20 years, I figured that out very simply. And anybody in your extended family has type one diabetes.

Ryan 5:43
Now know a lot of people have type, you know, type two and stuff like that. But absolutely nobody in my family is type one.

Scott Benner 5:49
How about thyroid issues?

Ryan 5:52
No, no real. My grandmother had a thyroid issue, but it was as she was older and stuff like that. So nothing, nothing significant, though.

Scott Benner 6:01
Gotcha. Okay. And 20 years ago, you were were you like regular an MPH? Or did you just make manmade and just make fast acting insulin? No, it

Ryan 6:11
was mph. It was mph. Yeah.

Scott Benner 6:13
Wow. How long? Did you do that? For? Probably not too long. No, I

Ryan 6:16
did it. So I got diagnosed, like in my, like, junior year of high school. And then it was I went on the pump when I went into college right at, you know, like, 17 and a half 18. So

Scott Benner 6:30
it's interesting when you talk to older type ones. And they, they, they always use that phrasing I went on the pump. Yeah, it's a very common phrase for people who have had diabetes about as long or longer than you have, like, there was diabetes. And then this magical the pump came along. And some people resisted it, and some people tried the pump. It's a Is that how it felt?

Ryan 6:54
It was magical. It was fantastic. Well, I mean, obviously, I was 18. So I was not my brain was not fully developed. And I was doing stupid things throughout my entire, you know,

Scott Benner 7:04
I college. One second, Jamie, is he have a fully developed brain now? Or is he still doing stupid things?

Jaime 7:11
No. I mean, it's a lot more developed. But it I'm you know, I don't know if it's all the way there.

Scott Benner 7:15
How many more decades? Do you think Ryan needs to become an adult? fully? Yeah.

Jaime 7:19
I don't know. Like, at least two.

Scott Benner 7:22
And you've Jamie have been an adult since you were 11? Is that correct? Yeah, absolutely. Make sure everyone understands. People think anyway, right? Go college, not fully developed brain? What were you gonna say?

Ryan 7:32
And then, you know, so the, but the pump helped. I'll be honest with you, and then I've gone through all the different, you know, technology, you know, when you know, I got into the CGM pretty early on, and, you know, was on, you know, I was in the I did the mini med pump for a long time. And then I had some problems with the sensor, you know, later on in it. And then I changed over. I was on Omnipod, for a little bit when my daughter Ellie got diagnosed, because she could only go on the pod and we got her on that within, I want to say probably like, probably a month. Yeah, less than a month, we got her on the pod. And we got her on the CGM. Within like two days of her being diagnosed, I was questioned. Oh, yeah. Yeah. And then now I'm on the tandem.

Scott Benner 8:19
Okay, let's go question Ryan. What's the biggest difference between modern insulin pumps and those first ones?

Ryan 8:26
Well, I mean, if you look at the integrated stuff that's going on now, I mean, it there's drastic difference, but to be honest, like, I'm the extended basals, the temporary bezels all those things were a little bit, you know, hard to use in the beginning. And they used to use these things called like, square wave boluses. And that kind of stuff. And, you know, they were, I just felt like I again, maybe was just because my age, though, I feel like I didn't really think nobody really taught you on them. And you were just kind of like doing and you're just like, Oh, well, you know, let me just try this. Let's see what this does, or whatever else. And I still do try things. But it was just it just felt very, I don't know, in you know, not really informed, and they weren't nothing was integrated. So that was a problem for me.

Scott Benner 9:11
In fact, then insulin pumps are just delivery systems, whether they were 20 years ago or now. And they've made improvements and given you different, you know, things you can do like, you know, extended Bolus and Temp Basal and stuff like that, which are obviously a really valuable. But in the end, it's just I try to explain that to people. They're like, Oh, well, we're moving to this. It's such a big deal. Like it's not like a needle as a delivery system. A pen is a delivery system. A pump is a delivery system, it's all of this just the way to get the insulin inside of you. There's a lot that you know, you can do with some and and not others, but still, it really should be looked at like that your point about the algorithms is huge. That's this is where pump companies are going to get to distinguish themselves with their algorithms. Jamie, I was wondering, did you did you know Ryan back in high school

Jaime 10:01
No, we met. We actually met and we were both studying abroad. So I met him like, I don't know, three or four years after he was diagnosed. I think right now we're 20. Yep. Yeah.

Unknown Speaker 10:14
I agree with you. He doesn't know. And

Ryan 10:16
I don't know at all. Where were you studying? Australia? Do you?

Scott Benner 10:24
Does everyone listening know how hard it is for me not to make like a ham fisted, 80s joke every time somebody says, we're studying abroad, and I want to say which broad were you studying, but I know that that's not appropriate anymore. I just know what it's like when someone says hormone, every time someone says hormone, there's an eight year old inside of me that goes, Hey, do you know how to make a hormone? And then there's a simple answer that it's completely inappropriate and 2020. That was so funny in 1982, and none of you will ever know. And but you'll know that it's somewhere in the back of my head, it pops up every time somebody says the word. Because I'm five years old. Still, Jamie? In case you're wondering, I need at least 20 more years to become a full fledged adult.

Jaime 11:09
They all have their own path, right?

Scott Benner 11:11
My path seems to be very long, and it it keeps circling back through when I was 26. But I get a little ahead, I come back again. What does it I should say? Does it enter into a young Jamie's mind? I'm starting to date a guy with diabetes that's different, or how much of it are you aware of or paying attention to?

Jaime 11:36
Um, and kind of how to answer that question. I like how much of a role did it play in our relationship?

Scott Benner 11:44
I was looking for honesty, if you're wondering how I was hoping you would answer the question. No, no, I

Jaime 11:47
am going to be completely honest. But is that what you mean? Like, how much did it matter in our relationship?

Scott Benner 11:52
I mean, did it impact you? Did you find yourself going? Or, you know, were there times when you thought I should find a boyfriend that doesn't have diabetes? Like how much of it gets separated? How much of it is Ryan? Who has diabetes versus Ryan? And this kind of his diabetes was sitting on his shoulder? So it makes sense.

Jaime 12:13
Yeah, I never like it never was an issue for me, as far as Are we going to be together? Like that was never. It never even occurred to me to not be with somebody because of that. We did have I would say, like, some struggles as far as and Ryan, you can try them whenever you want. It. I think it played a bigger role in the early years of our relationship, because I think we were both still learning a lot about it. And I feel like I learned a lot about it kind of on my own. Like I don't I feel like he just kind of did his I don't know how comfortable you were talking about it in a minute. And would you say that's fair, right.

Ryan 12:53
Oh, yeah. No, I always like it's very funny because Scott, like, you like talking now. It's just like it. Because I grew up in I grew up in New Jersey. And like, it's like, he, I feel like we're like, like talking to like one of our friends. It's very interesting. But um, you but like, ya know, when I first did it, I mean, we didn't like even my house and stuff like that growing up. We didn't talk about it a lot. Like it was kind of just like, I was old enough. So it was just like, Oh, well, you know, we talked about it in the beginning when everything started, but then when I went off to college, I kinda was just like, Oh, well, Ryan just deals with it. So that's kind of how I dealt with it. And it wasn't really a top of a conversation or like, you know, I used to try and like hide my insulin pumps and stuff like that. So like people didn't know, in that kind of stuff. When I first You know, when I first got diagnosed, it was just felt weird, but because I didn't know anybody else with it.

Scott Benner 13:41
It's fascinating to me, because, of course, my friend Mike and I grew up together and he had diabetes, and he was diagnosed a similar time in his life as you are. And it occurs to me as you're speaking that diabetes 20 years ago, was like psoriasis on the back of your knee. You just wear pants all the time instead. And and that was the end of like, hey, I've got this thing on the back of my knee. I don't want to see it. I'm going to cover and that's that and we don't like I have this feeling in Ryan's house. His parents were like, Huh, as tough luck, kid. Alright. See ya. You have brothers and sisters? Ryan? Yeah. David odours is Yeah, they were probably like, ah, she got off lucky. See a Ryan, you want to try that? The pump? Like, you know, like, like, it was just like, honestly, your parents have a kid with type one. Now. I know. You were just on your way out the door, Ryan, but the way you're managing your daughter and the way that your parents were involved in you, there's probably no similarities at all right?

Ryan 14:41
No, I think I mean, my parents are very empathetic in the beginning of everything and really like, you know, tried to learn and did that kind of stuff. But again, like I was like, it's kind of out the door. But no, I mean, I'm, me and Jamie are really actively involved. I mean, we got we got her a one c down, you know, and we diagnosed her like, like Ellie, really Quickly basically, yeah, I don't think she had like, again like, I don't know the scientific part of it or whatever else but I, you know, I you know, she her sugar was like 230 and she never went to the hospital she went we took her right to you know, Joslin Diabetes and Boston and but she did an outpatient. So it was kind of cool in that sense. And you know, we've you know, the CGM and everything else going along with it makes it a lot easier to be kind of more involved. I

Scott Benner 15:28
feel if that makes sense. Last question along these lines for you, Jamie, I put you I give you a magic wand and a time machine. And I send you back. You said it would it paid no part in you your decision about dating Ryan or not? I'm assuming because he was so hot with that jersey accent in Australia.

Jaime 15:46
You know, really does something.

Scott Benner 15:48
Yeah. pulls you right? But, but I take you back in a time machine. I tell you, you marry this guy, you're gonna have two kids, one of them's gonna have diabetes. You want to bail? No. Okay, good. What did you learn? growing up with Ryan. And I don't know that. People who haven't been married or younger people would think of it this way. But when you get married, you do grow up together, like so what did you learn growing up with Ryan, that's helping you with your daughter.

Jaime 16:21
So many things really, like he has such a great attitude. And it's literally never caused him to stop something that he wanted and wanted to go for. Or he's never had, even when they go, I'm sorry, I can't curse on you. Even on like a rough day. Like when all the diabetes things might go wrong. Like he just never has had a bad attitude or felt bad for him. So when you know, it's okay to feel bad once in a while you know about it, like it can suck sometimes. Yeah. So I think he's just always had a really positive attitude and sort of like, that has been really inspiring. So we sort of do that with her like, yes, it kind of sucks that, you know, all these things just failed in one day, but we're going to change them, we're going to move on, and we're gonna do whatever you want to do. So I think that has probably been the best thing that I've learned from him as far as like, how to really embrace it and empower her. Excellent.

Scott Benner 17:17
Brian. How many of those days? Are you just faking it till you make it?

Ryan 17:26
You know, to be honest with you is like I don't I don't hate that I have diabetes. Like, that's not, it's not one thing that I really hate, I feel like it did. It helps me grow and think about things differently than other people do. You know, I would probably be way worse off if I didn't have diabetes, in some ways, to be very honest. And you know, and I like the way that Jamie thinks that I always am positive, but there's definitely like that. There's, there's times it really sucks, and you're just like, this blows. But and then you know, like, and believe me, I'm not the easiest person to live around to I can be I can be an ad. Sorry, I can't curse on here either.

Scott Benner 18:08
I gotta, I gotta be honest with you started in Jersey and ended up in Boston, I'm figuring there's gonna be a lot of bleeps in this.

Ryan 18:16
But so, you know, so So I think, you know, again, you do fake it at times. Like, there's no doubt about it. And you have to, but overall, like, I don't know, my experience with diabetes is, I think, different than some people but really on point with a lot of others.

Scott Benner 18:31
Yeah. Can you give me an example of how your life's better with diabetes?

Ryan 18:36
Just in a way, like have, you know, thought processes and like, you know, do I really want to eat this entire pizza? Yeah, I know, that that's, you know, you know, some nights after, you know, a longer night for whatever reasons, yeah, that might be a great idea. But I know, my trigger is gonna be 600 by the, you know, in the middle of the night, because just have all the fat and whatever else. So, like, it just, it just helped me out, well, maybe I only need three pieces. But then again, like, there's other days that I eat seven pieces, and I'm like, I'm gonna try my best, you know, I'm bolusing like, you know, you know, balls to the wall, and just trying to get as much as I can in there. And, you know, trying to do it, because it is, like I am, I'm normal. But I think, you know, in regards of, like, healthy eating, and, you know, trying to just, you know, make decisions for, you know, and I'm a social worker, as well. So it just it really helped my career of like, wanting to impact other people in a positive way. Yeah.

Scott Benner 19:33
Yeah, that's a expected answer, honestly. And how I find it here too, is it just gives you a perspective. You don't you know, it's like you're leveling up on perspective as you're starting in life. And I have to say I am. It's December 15. For context. I think I'm in my 123 4/5 day of wearing a CGM right now, and I've lost five and a half pounds for the exam. Really Accurate reason of what you just said is that I, I made this, I said to people look, I'm going to put my blood sugar online. So you can see how healthy pancreas or working pancreas handles food, right? And then we're going to move on and my wife's gonna do it next to probably has little pre diabetes. So you're gonna get to see that and then we're gonna have some type ones come on and do it. And people are gonna get to watch other people's blood sugars and see how they Bolus and stuff like that. So part of it is I have to log my food so that people know, hey, he went up here, and oh, here's the meal, right? It's really cool. And hopefully it's when people hear this. And so going on on the site. It's Juicebox Podcast comm forward slash CGM live.

Ryan 20:38
But no, we thought it was really cool. And we looked at it. I was actually surprised about your serial one that you did your serial challenge that didn't go up more than it did. So I don't know.

Scott Benner 20:47
I have to be honest, I was too because I took two different sugary cereals, mixed them together, had a certain word each of them and I drank that horrible milk at the end with all the sugar in it just was so nauseated when it was around, like I'm just doing this for the podcast. But the process of having to log the food has made me skip over a number of different things I thought to pick up. Because, because just not because I was like I don't want anybody to see. But because I was like, Well, I don't want to like bastardize this, like let my system clear out. I'll put something else. And so I'm obviously snacking at odd times of the day that I don't imagine that I am. Because like I said, the weight and and I'm not eating well, I'm trying to tax my system. I mean, I haven't had a bowl of cereal in years. And I ate so much candy yesterday, I got nauseous, I was just like, Oh, I like a feeling for when Arden says to me, I can't eat anything else. And I'm like, you have to drink this, you're gonna die. And she's like, well, then it's my time, because I can't drink any more juice. I had that yesterday, I was like, let me just take more candy right here to see what happens at this time of night. And I took him maybe like 40 carbs, it was probably mostly sugar. And I just was nauseated afterwards. I was it was like way too much for me. Anyway. And it looks like your pancreas is working pretty well. Yes, it does. And I'm almost 50. So I figured it's only got a really eight Look, I know how I feel, it's probably only going to make it like 15 more years. So I'm probably going to be okay. For today, I can't lift my shoulder up for some reason. So I'm pretty, pretty aware of my age today. To me,

Ryan 22:21
it makes me look at it to just to be like, Well, you know, this is what it's a really good like visual to get people to see like, this is how a real panky was just working, I really need to work like I was talking to Jamie. I mean, my targets are between, you know, 7075 and 140. And I was just like, I really need to bring those down a little bit more to really get in that range. And she's like, don't be Don't be like that, you know, like, but like, you know, that's, you know, I try to you know, I don't know, it just it really, it makes you want to get better, better readings for me I

Jaime 22:53
can I just I didn't say don't be an app, I just said like, you just move it down like two or three times, which is great. And his range has been great. His shoulders have been great. He feels great. And if you want him to go lower, of course, I would support him. I just sometimes he does it all at once. And I'm and maybe just go like a little bit lower, and then a little bit lower. You

Scott Benner 23:12
know what I'm saying? If only boys were girls, then every girl could be happy.

Ryan 23:17
Well, and I wasn't saying it in a negative way, either. Because she's absolutely right. I don't know what you like, because if I do that, like Believe me, I will I will bottom out more than I do already. So I i 100% support what she says it's 100%. Right,

Scott Benner 23:31
I just think of it as their indicators to me. So I like to know when ardenne goes under 70. And I like to know when she goes over 120. But on hers, I think we have it set at 7130. Because if she should rise up over 120 a little bit, and we try to bump it back down again. She doesn't need to be alarmed to know that her blood sugar's 126, leveling out and coming back to 119. No, like that's not necessary. So there's a way to manage it. But I think knowing I think the biggest mistake that people make is setting a high alarm so high that doesn't go off, it completely takes away the value of a Dexcom of being able to re address an insulin mistake before it becomes a problem. That's all.

Jaime 24:17
Yeah. And so we also have those kids. Sorry, go ahead. Can you shut this kids up, please? Hold on.

Scott Benner 24:29
I don't know what you got to do. Or if you've got a closet that's on the other side of the house or something like that, but they need to get into it. We're making a podcast here. There's important things happening. Now Thank you very much. I would just I you know, I was kidding. Great. Mostly you didn't kill them or anything. Right. And then a strange turn of events. The mother killed the daughter who she was on the podcast talking about. That's the power of podcasting people. She wanted her to be quiet so long later very regretted fell over the whole thing. A little bit dark, she's been locked in, don't lay they lock you in an asylum. You don't have to go to prison. It's fine. Of course not Jamie, to this, which is one of your ideas, which one of you had the idea to do this, by the way?

Jaime 25:16
Oh, I know, I've made probably, then lead me out of it. I started listening to it first. And I kept telling Ryan, like, you're really gonna like it. Like, he's, he's not like a bush. This is gonna be like, you know. And then one day, he came back from the grocery store and was like, that was it. And then he started like listening obsessively. And then I was like, I'm gonna get us on this show. And then he went and did it. So I don't know, it was a collective effort, but we just really wanted to be on it. That's

Scott Benner 25:46
excellent. Brian, you listened while you're grocery shopping?

Ryan 25:48
I do like it. Literally, what would you talk about? I can't remember which one it was, it might have been. You're the diagnosis story that you were talking about. And I was literally crying in the middle of the grocery store. And I was like, Oh, my God. do this anymore. You know, so that's, but yeah, no, I listened when I go grocery shopping. Sometimes.

Scott Benner 26:11
I'm gonna wait like months. And I'm gonna stop in the middle of an episode somewhere and just insert my voice going, Ryan, it's me. Scott. Are you in the grocery store crying again. I could be doing simple mean, shout outs to listeners as a way to add fun to the podcast. Now. I'm sorry, I make a lot of people cry. I feel bad about that. Usually I say I make a lot of ladies on the internet crying. But apparently it's ladies and you, Ryan. So I got him in that category. I get filled up a lot while people when people come on the podcast. Sometimes I don't say it. But sometimes people are talking and it's hard not to be emotional, you know, with what's going on in their lives. Anyway, so Jamie. Last year, it sounds like you diagnosed your daughter in five seconds. So

Jaime 27:01
well. First of all, we were on vacation. Of course. Yeah. And honestly, we probably would have done that first night. But because of like the circumstances we really couldn't tell. And then so what happened was we It was like a heatwave. So we went, we got somewhere we've been traveling kind of for a few hours. And it was like really, really, really hot, like an actual heat wave. And that night, she had like a minor accident, which, literally since she was potty trained, she's never wet the bed ever. So we thought it was really weird. But we had also all been drinking gallons of water and we were in a new place. So I was like, I don't know, right? You know, we'd sort of like Well, let's just the and then the next night I have them again. And she was like I'm so thirsty. And literally the next morning we checked her sugar. We went to the doctor.

Scott Benner 27:54
Do you guys talk about it after she said she was so thirsty? Did you go into another room and do that parent thing? Yes. Yeah. Who said it first? Do you remember? Like who uttered the words? Maybe she has diabetes?

Jaime 28:06
I might have? I don't I don't know. Honestly, it probably was both. Like I don't think we were on the same page. I think we both knew that minute.

Ryan 28:12
And that literally like gave like a look. It was like a look at we were like in the bed was like huh. And I just like pulled out my tester tester there. So

Jaime 28:20
no, we let her sleep at night. But we did it in the morning. And you know, the other weird thing is that summer I had had I had she was sick a couple weeks before like a week or two before I had brought her to the doctor to make sure she was okay to go to on vacation because she just had like a virus that and I was like, she seemed really tired. That's the only other thing that I saw with her is she was really tired like she was napping more than she ever had. And so I brought her to the doctor. And they had run her we had had them running her a Wednesday. Anyway, they ran in September. So we had bloodwork done, and everything else was fine. But that was like sort of the only other symptom that we saw. And then that happened and we just went and I'd say

Scott Benner 29:06
you're talking to you is cementing in my heart that I think it's bad for me to bring Kelly on the podcast because Ryan just said something and you just ran him you're like No, wrong. You got that wrong. I know. But that's not I don't need that on the podcast. I don't need Kelly telling me I'm wrong about stuff. Like sometimes. I don't know. It's my best recollection. You know, like my fear is, is that I've said something? You know, like in the past where I'm like, I tell you guys like yeah, then on Wednesday, and she's gonna come on and be like, that was Tuesday. You're an idiot. And then everybody's gonna be like, that guy is an idiot. Why am I listening to him? And then that's it that my podcast is over. I can't people cannot see me as a husband. It's not good. It's a bad look for men. It's a bad luck for anybody but pretty good luck. I feel like it's in pretty good shape. There's no doubt about that. Ryan you have to stay in that house when we're done talking Kelly can't hear me right now. Difference between your response and my response, by the way. But No, but seriously, I know listen, I what I really wanted to say was it's interesting how in those moments, your memories get conflated. And it's it always makes me think, I wonder when people are talking like, how much of it? Are they really? Is it just how they remember it? Or if it's really how it happened, I think and I always think it's close enough that it doesn't matter. Like if Ryan's version or your version doesn't change the events as they move forward, you know what I mean?

Jaime 30:31
Well, so I, you know, and I'm happily like, I admit, when I'm wrong, not always like easily, but I couldn't be sure that we were like, you know what, we're going to check her in the morning, there's really nothing that we would do differently right now. Can we maybe you're right, maybe we did checker, when we checked her in the morning, called the doctor and left, basically, my wife

Scott Benner 30:51
says that she admits when she's wrong. And then I asked her when the last time she was wrong. And she says it hasn't happened yet. But I will admit it when I'm wrong. So I don't know. Meanwhile, it doesn't matter. Like that's my greater point is that the way it happened is fascinating to me. Like, that's where I think that it becomes less important. Right? The the like the granular details, I always think of, I used to work for my uncle when I was a kid. And one day, you know, you've got like this 15 minute coffee break in the morning, you're breaking yourself in this horrible heat, I used to work in a sheetmetal shop. And you know, you'd just be collapsed somewhere trying to like, get enough energy to get to lunch. And he'd come out, start telling a story. And it was like, I'll never forget back in 1950, mazak, 58, or 59. And you're just sitting there going, why would it matter if it's 58? Or, like, just get to it? And? And wait, I do remember because we had that red Ford pickup truck? And was it blue? And you're just like, come on, man. Like, there's an art to this, you know, and these little details and then at the end, it's about a dog that gets hit by a bus and you're like, Well, what does that have to do with the truck? So anyway, I see storytelling as it's important, like the story is important sometimes, right? Regular details aren't as much. Anyway, we've gotten sidetracked with my fear of having Kelly on the podcast.

Jaime 32:15
I think you should have her on. And like, as a viewer, not just like, as a wife who's, you know, running ran over repeatedly on this podcast, but like, it is nice to hear both perspectives, especially since you are always the one sort of dispensing it's like, just sort of nice to see how teams work. Basically, as far as like, I don't know, I've really enjoyed that aspect of your of your podcast, you're

Scott Benner 32:38
more of like a team, like the way an owner of a football team is involved in the team. Like they pay for everything. And then once in a while go Hey, why are you doing that? No, Kelly knows. Kelly knows what she's doing up to the point. And I think that if I dropped this in her lap, that she'd figure the rest out. She actually joked the other day. She's like, Oh, you can't die because an author listened to that podcast. It was like it's good, you know, and she's like, whatever. But now she will be on at some point. Actually, we just got a microphone so that Arden can be on are we gonna do harden first and then we'll see where Kelly goes. Maybe I'll have to wait till 2022 for Kelly. I gotta tease this along a little bit, you know? Anyway, so Okay, so we figure out that she has diabetes she basically has like the equivalent of like, you know, she like you missed the Bolus by three units because our blood sugar is not even that high. Ryan goes right into I know what I'm doing mode you do who takes the lead I'm so interested in who jumped ahead.

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Jaime 36:36
Again, I was really like a team effort like so at that time. Our youngest had just turned one we were it was our second day on vacation. And we didn't really even know where we were. So we called our pediatrician. But so where are we? Where are we? We're two hours from like, our home area and two hours from Boston. until either way, it didn't really matter. We ended up going to Boston. I don't know we just called our doctor and we're like, we're pretty sure she has type one. What do you have any suggestions? I don't even remember what our pediatrician knew did but like Ryan, Paul Johnson, and we just went there. And they got us in like, right away. They were amazing. Yeah.

Ryan 37:15
Oh, yeah. No, our primary doctor told us to go to the hospital. And I said, No, we don't need to go to the hospital. And then she did her sugars at 200 or whatever else. And I was like, I don't think it's that big of a deal. But I understand we need to get a treat it so I was like, Alright, well, I'm gonna call Jocelyn, and do that. And I called them and they were like, literally fantastic. Yeah, when I went in there, and it was like it was it was fantastic. The doctor there just, you know, who was who's an endocrinologist now, who I would recommend to anybody. It really kind of just got the ball rolling. On the test, they did everything. And it was literally within a day. And we're, you know, we're out there giving her shots. And then in the community, which for most people, and even myself being a type one was like, still, like, traumatic, and I remember we had to, like go downstairs to a restaurant to go get food in the afternoon, or when we were leaving at like six o'clock, and I was like, Oh my god, what are we gonna do? Like it was like, so like, stressful and like, just being like, this is all new. Like, I'm used to doing it to myself and it but doing it to your kid is completely different.

Scott Benner 38:21
Yeah, I remember given Arden insulin in the cafeteria of the hospital before we left because we were too afraid to get in the car and drive without food in her that Yeah, and that was the first time outside of the hospital room that anybody had given her insulin and it was a was not a pleasant moment. I I'm wondering do you recall? Or can you come to a consensus on?

You see why I don't do this that often? Who? Who told her? Did you let the doctor tell her? Did you tell her we're going to the to the doctor because we think you have diabetes? Like how did you handle that whole moment?

Jaime 38:59
Do you want me to go? Go ahead. I'm pretty sure we talked about it on the way up and because we had checked her sugar a couple of times and we told her about it once we had decided what to do, which was go to Jocelyn on we talked about on the way up and said you know, we just have to go talk to doctors and do some blood work because you might have what Daddy has, and we just need to take care of your body. So we're gonna learn what, what it is or what the deal is when we get there and and you can handle it and you're brave. And that was sort of how we spun it.

Scott Benner 39:29
Was she just like right on? or was she like, did you have to stop her from crawling out of the window of the car the whole way? Like what was

Jaime 39:36
fine in the car. Obviously the first day there was kind of like doing her first injections was, you know, I'm sure anyone who's been in our position in your position knows that it was those first few days of going from not being a diabetic to having diabetes. For a little kid. It's hard. It was hard. But she's so resilient and so amazing and we we didn't leave our vacation. We went We went back that night and then we went back to Jocelyn the next day. So we had two days in Boston to just kind of get everything rolling and get her information and prescriptions and all that stuff. And we finished our vacation and then we went home.

Scott Benner 40:15
Does Ryan having type one? do you guys feel like that's made it easier for her? Um,

Jaime 40:22
I think she it's not it wasn't as like completely unfamiliar. I guess that would be my, you know, I will I've, from the beginning, we've tried to be really open as far as like, you know, if Brian needs something for his shirt, or like daddy sugar's low, he just needs a few minutes to take care of his body. And you know, she's seen him test his sugar and all that since she was a baby. So I think it wasn't as foreign. What do you think?

Ryan 40:47
Yeah, no, I think the same thing. I don't know if it was easier, or anything else. But she's also like, she's a really good kid in the sense of like that she'd not been that's like a worse way to put it, but she's a good kid. But it's like, it's like, She's like, like, she, she goes with the flow. Like, she's really easy about things. So I think that, you know, in the beginning of it, it was it was really, really hard getting getting pumps on used to be like, do that. The damn clicking that the Omni pod does, like, it's just like, it's like, like those things like really, like, you know, frustrated me at first and then like, within like six months, though, I mean, we, you know, you know, she gets her tablet when she gets gets her pod on and she's, you know, she goes right through it. You know, we did our sensor and or pod today, you know, Jamie just did it for her. And it's like, it's like, nothing, you know, it's not it's not a big deal for right now.

Scott Benner 41:36
It's excellent. That's very cool. All right. This is good. I'm, do you feel like I'm getting through this? Okay. It's different managing two different voices, but I feel like I'm alright. Are you like sitting here going? When am I gonna get to say they're really important stuff. Are you having that feeling? Not at all? Okay, good. Good cheese. Let you guys down. You know, after you jam your way onto the podcast, we get sounds like you were at home, like hatching a plan. Like, I'll send an email, he'll go for it. It'll be okay. Right, Ryan?

Jaime 42:06
I thought I would. And he just did it on his own. So I don't know.

Scott Benner 42:09
Oh, Brian, look at your free will. By the way, earlier, Ryan, Jamie said something and you went, I agree with her. And I was like, That was nice. I didn't call you out in the moment. But I was like, that was interesting. He's like, She's right. She is like to be honest. She is Yeah. See, Ryan's open up one more, baby? Let's see. The hard No, no. I got to agree. The kids are like, they're still here, like, you know, calls in his room, you know, as a junior in college, and I'm like, oh my god. It's cool that you're here. But it's, you know what I have to say, while he's going to having having a kid going to college, you know, from home, which was not what we were accustomed to, obviously, with Corona and everything. And, um, that part sucks. Because you get to see all the like stress that the college brings. And he's like, living through it and everything. Like, I would say that just the other day. It's been like two weeks since he took his finals. I think he's just starting to relax from the semester. And I think he really he hated it. He's like, there's like there was so much wrong with doing it this way. But I, you know, I Joe, I I'm joking, but I would, I am one of those like people, like if he lived here his whole life, I'd be like, Oh, well, sure. He's kind of lame, but it's nice that he's here. Pretty much. I'll just bleep this out later. I'm pretty much like Ryan. So I would just be like, like, oh, the kids. I definitely have to bleep that out. But, but like, the kids are here, and I love the kids here. So anyway, Ryan, I was wondering if you could give me some perspective, this is be helpful to me that you're a type one who likes a podcast about type one made by a guy who doesn't have type one, how do you intersect with all that?

Ryan 44:12
Well, you know what I was actually I was thinking because it really, but a lot of the things that you say and they you discuss and everything else, it's it really is a lot. You know, like I think on a lot of different ways, which I think is pretty crazy that you're able to do that. And the way that you you know, the way that you know when when I started listening to in, you know, Jamie's like, Oh, yeah, he talks about being bold with insulin. And I'm just like, I'm like, Oh, that's a cheesy thing to say, but I'm not I'm sorry. Yeah, you should probably leave that out to Scott. But

Scott Benner 44:43
it's a cheesy thing to say. And by the way, didn't even start off as if to give you an I don't want to cut you off. It was the title of an episode. And then people started they get popped up as a hashtag. And after I saw it a couple times, I was like it those words couldn't have gone together before I put them together. Very Recently, that would be odd. And I started backtracking. And it was just like, Pete, that's what people took from Episode 11 of the podcast that they should be bold. And I was like, all right. And I kind of like you, I was a little like, geez, that seems like a T shirt. That's not what I was going for, you know, but then I leaned into, and I was like, This is what people are, are reacting to them. Why would I take that from? So?

Ryan 45:22
No, I hear you. And I 100% agree. And then again, I started listening to it. And like, you know, the way that you that you manage the blood sugars and the way that you look at things, and the way that you were, you know, kind of looking at the graphs and doing that kind of stuff, it really was, I was really amazed by you that you were able to take all that information and put it into somebody else, because you don't even know how artists feeling you don't you know, you don't, you don't have all that kind of concept of like what the actual body's doing, and all that kind of stuff, but you're making it work. And I think your your overall goal of the you know, being healthier for a longer period of time, by being bold is is 100%, the idea of diabetes, type one diabetes, and that's what needs to be broadcasted out there. So that's how I intersected with it, how I thought but as a, you know, as a type one, I mean, I just, I think a lot of the stories and a lot of the people that you bring on and stuff like that are there is really interesting. And it's nice for me, I don't have a lot of I don't have, I don't have anybody who has type one that I'm like, really personally connected to or anything like that. So it really, it's nice to hear about other people and what they're doing. Oh, that's cool.

Scott Benner 46:31
I appreciate you sharing that with me. Because it's, it's, it's, it's hard for me sometimes, because I don't get a lot of feedback, like this is just my assumption of what would be valuable to people. So, but I did like the part where you basically called me brilliant for figuring out diabetes without having it. So I let you talk. I'm like an idiot savant of diabetes, basically. So I'll tell you, it's completely motivated by Arden. And she'll probably never realize, or maybe it'll take her years to figure out that my concern for her is helping her and so many other people, like, I don't know, if she'll ever realize how many people she's helping. You know what I mean? Like, I don't know if she'll ever figure that out or not, or if it just won't occur to her that way. In the exact same way as that, you know, a person who listens to this podcast is an editor at Newsweek, right? And therefore, I can say this now, because I won't come out then one of the there's going to be a while you guys are like the only ones that know this, don't tell anybody this, please. So there's going to be a cover story on Newsweek, I think, at the beginning of the year of like, technology that's coming in 2021. And the Omni pod five is part of it, which is a big deal for them. And and, you know, it would be a big deal for any company who would get on, you know, in a situation like that. The way that happens is a person who listens to the podcast says, Well, I think this is one of the things that I'm really excited about. They happen to be in an editorial position, you know, to give some some opinions at Newsweek, that person contacts me, I put them in contact with somebody on the pod who says, Sure, that would be great. You know, here's some, here's the information you need that you're asking questions about. And that ends up there. And after all, that kind of happened behind the scenes. And before the magazines come out, the person from Omnipod sent me a note and said, Hey, I really appreciate you, you know, making this introduction for us. And it was the person thanking me, the person thanking me was the person who bought ads on this podcast before anyone was listening to it. And I told her, I said, I don't forget people who have had my back. And if you can, believe it or not, the before this podcast began, it started on a phone call, where on the pod I used to write for their blog. And they were contacting me to see what I was interested in writing for the upcoming year. And I kind of had the nerve in that meeting to say, I don't want to write for your blog anymore. Please take the money you give me for writing and buy ads on my podcast with it instead. And that'll be enough money for me to get this off the ground. And my goal is I want to help people. And I think if I help people, that'll be valuable for you, because it'll be you know, brought to you by Omni pod, like, you know, you'll get a little bright sunshine from it. And all these years later, that still did something positive for Omnipod. This one nice thing this one person did, coming up on like eight years ago, you know. And now you're going to pick up a Newsweek magazine and turn to a page inside and they're going to talk about the on the pot. And I just think of Arden in the same way. Like I wonder if Arden will ever realize that 10 years from now, some kids going to get diagnosed with diabetes, they're a onesies, never really going to come out of the sixes and they're going to live a completely different life than they would have. If Arden didn't let me talk about her diabetes on a podcast and To go back further, if a lovely woman at Omnipod wouldn't have said, Yeah, give him the money, and let's see what he can do with it. So, there's a lot of people that touch this, you know?

Jaime 50:09
Hmm, that's awesome. I can't wait to read it.

Scott Benner 50:12
Now. I will hopefully it'll be a great story. But yeah. Oh, you know, I didn't need to talk that much. I was when I was

Jaime 50:19
okay. Um, so we can't really talk about it. But you probably would like to know that we are doing the horizon study.

Scott Benner 50:27
Well, well, well.

Jaime 50:30
So, yeah, we're not really because we're still actively participating, and we're allowed to really talk about yet, but we'd be happy when we can. Cool.

Scott Benner 50:43
Yeah, let me know when that's okay. Ryan, we don't need him. And Sutton. I'm just kidding. Ryan, are you seeing things in the Omnipod Horizon study that are making you interested? In Are you or are you using an algorithm with tandem right now?

Ryan 51:01
I use the tandem.

Scott Benner 51:03
Are you using control iQ? Yeah. And how's that working for you?

Ryan 51:07
Fantastic. Yeah. Yeah. Tell me it's not, you know, none of them. You know, they're not 100% you know, in any sense, you know, you're not going to, I feel like people have this idea of like, Oh, I just, I don't really need the Bolus anymore. I just need to, you know, just need the pumps is going to do it for me. Like, that's, I just heard people like talk like that. It's not like that at all. But it definitely, like, overnights are like so fantastic. You know, they they make it so much easier by doing that. It's it's really, I don't know, it's a really good system.

Scott Benner 51:38
That's excellent. I may have messed up the on the pod study a little bit. Because parent of a child, who is in the study, found the podcast as they were getting into the study. So they wanted to make all these aggressive moves with insulin. And the study coordinators were like, Hey, could you leave it alone? And she's like, no. Such. So she kept like, turning knobs and got real, like stability. It was it was Oh, hopefully they learned something from it from Oh, believe me, believe we,

Ryan 52:06
I there's nothing that would not make me turnips, if that makes sense. But yeah, it's uh, there's no, there's no doubt about it. Like I you have you control things, you know, what I mean is still you still have to do what you need to do to make it happen.

Scott Benner 52:21
I took it as like a real parent parental love thing. Like she she found something and it said to her, if you just do this, this stable blood sugar that you're seeing at one, whatever is going to come down. And she just didn't have the heart not to do it. Like even, you know, for science or for anything else. She was like, Look, you can recalibrate, you know what you're seeing from us after we make these settings changes, but I'm not I'm not gonna leave my kids blood sugar like this. And it all worked out like she was she stayed in the study, you know, it was fine. But it was interesting, because she had to fight a little bit. She was really tough. I remember talking to her. And she was a she was definitely you could see what where the phrase mother a mother's love comes from. But Brian, to your point. I think this has been the interpretation from people who don't have an insulin pump for ever. Like, oh, I'm going to get the pump, the pump will come and then everything will just be automated and easy. And I won't have to do anything anymore. That's always what people think. Yeah, you know, yeah, but yeah, I mean, listen, Arden's been looping for like a year and a half now and algorithm based pumping in my opinion is is the way forward for now unless they come up with something better it's it's markedly better than anything I've ever been able to do on my own not that we couldn't get this we were getting the same results The other way you know the way that I talked about on the podcast but it's less work and overnights you're 100% right or just kind of magical

Ryan 53:54
Yeah, yeah. No it's that's a that's like a huge relief for I think any parent of a child what they want I mean, it's the overnights were always stressful when we first started with everything. But again, we were lucky enough like To be honest, like always been lucky enough to have the CGM they pretty much this whole time. So it makes it it makes things so much easier. And I was totally against CGM for a long period of time because of how much they like sucked for a period for a while. But you know, there's no there's no way around it now.

Scott Benner 54:26
Yeah, the the leap from Dexcom What was the G Dexcom? Seven, seven.

Ryan 54:34
I never had a Dexcom until, until like the last two years. I was all because I was on the mini med pump. So I always had they use their crappy ass sensors. And that was that was always just so awful. I hated them so much.

Scott Benner 54:49
It's not my fault, Medtronic that people don't like your stuff. Go ahead. What was that? No, I

Jaime 54:54
was gonna say but like Ryan to the point of the Dexcom like You know, overnights as a parent, obviously, like, those are really great. But they're also really great as like a spouse. Like, I feel like Ryan's overnight lows are like almost. I don't know, not not non existent, obviously. But there's so much better and I feel like, Ryan, you shouldn't be done this, but like, I feel like you're feeling your lows has improved drastically since you don't have the depth on?

Ryan 55:26
Yeah, no doubt, no doubt. I mean, I, I felt like control has been so much better

Scott Benner 55:32
taking your variability away, you're not bouncing around as much.

Ryan 55:35
No, I think by you know, by their very abilities, like a belt, like a it's about like a 3035 it's usually about the center deviation on things. You know, in my, my a one sees are like about, like, you know, 5.5 5.6 right now, and they've been that way for the last, you know, year or so year and a half so, and I never really was above, I was never really above like 6.3 really overall, but bringing it down that much more is just been and I couldn't have done it without the Dexcom like to be honest with you. It's it's just it's, I don't know, it's the definitely the best thing that I've done in my diabetes.

Scott Benner 56:11
I thought it was interesting that when it came up, you talked about it as a perspective of a parent Ryan and then Jamie felt like I was gonna, I was gonna say, you know, because you talked about overnights for parents, I was like you can't forget about adults who have you know, who lose sleep and sit up and you know, have to mess with a blood sugar to four in the morning, then get up at 630 and go to work. You know, we're getting up at 630 and be a parent and then I'm just like, well, I can't tell him not to forget he has diabetes. And I was like, I wonder how I can get back into this conversation. Jamie, you just did it. So thank you very much.

Ryan 56:42
That was excellent. You can only tell me that's okay. It's completely fine. I forget things all the time. But it's uh, but again, like, if it's yourself like you don't think about it like I don't I think about it more for her. You know, I'm worried about her. It's not like with me, like I'm so used to dealing with that stuff. It's like not the I don't know, if it's a part of it's a part of life,

Scott Benner 57:00
the way you answered it is not unexpected, because, you know, people always worry about the people they love more than they do about themselves. But I think it's interesting, because you're talking about a low six to a mid five, you would think that's not a big deal. Like a low six is probably like a 120 average blood sugar like right in there. And a mid five is more like it's still really more like a 90, maybe like a 9095 budget. You know what I'm saying this as I have this amazing calculator that somebody bought, somebody built for the podcast, that I could just pull up instead of acting like there's no way to know. So what I'll do is click on a one C and type 5.5.

Ryan 57:42
And I can I also tell you something is that when we were when we started this study, they were it was it was very interesting, because I took they took a one C and she was at I think it was a 5.4. And I was like, Oh, I don't know if they're gonna accept her into this study. Because I feel like that's pretty pretty on point with things. And she was only she was in like low less than 1%. You know, so I mean, it felt really good to have that. Can you tell me if the study is keeping her where she was? What do you mean? We're still in the study?

Scott Benner 58:15
Yeah, no, but is there a one c staying similar?

Ryan 58:18
Ah, so you know, so it's about I don't know it. I don't know how much they can say about it. But I mean, her he wants to her last day when she was was. I think it's like five point I think it was 5.6 maybe 5.5? point six?

Scott Benner 58:33
I think it was exactly? Well, here we are 5.5 a one sees an average blood sugar of 111 or 6.2 if you're in Australia and other places. So to get to 6.5 is actually an average of 140 to 7.8. So Ryan, had you been a 6.5 and then gone to a 5.5 you took you took almost 30 points out of your blood sugar on average. And that's amazing. You know, to me like that's the for your health. That's a huge thing. It really, it's just fantastic. I agree with you. I don't know why it's it's not fair to say I don't know, I do know how good I'd be at diabetes without a CGM and how good I was with and without it. I'm definitely better with it. For certain and all the things that you earlier said, like, I can't believe you figure that stuff out. It all came from looking at a Dexcom CGM. like looking at the data and seeing cause and effect that That to me was the was just, it was the biggest thing. Like I was like, Oh, I did this here. And this happened. I wonder what would happen if I slid it over or made it bigger, you know, a little more insulin a little sooner. And then I just kept fiddling with it. And then one day I was like, Oh, this is the spot. If you see me speak live somewhere. There'll be times I'll tell you about going to a doctor's appointment with ordinal years ago as Dexcom was just coming out. And Arden's nurse practitioner asked us if we were getting one I didn't I had never heard of it before and didn't know what it was. Then she told me this simple story of like this 18 year old boy in the practice who loves m&ms but can't figure out how to Bolus for them. So he got a CGM and went out and bought like a grab bag like a hand, like a hand sized bag of m&ms. He bought like a week's worth of them. And the first day just Bolus, and his blood sugar did everything it usually does. So then the next day, he gave himself more insulin. And then he kept doing that for a couple of days. And then one day, it made him below. Like, he popped up for a second I got low, and then that made him start messing with the timing. And she said, By the end of the week, besides getting to eat a lot of m&ms, he figured out where to put the insulin and where it didn't spike. And he didn't get low later. And I was like when she said that, I was like, Well, if that kid can do it for m&ms, I could do it for everything. And I was like, Yeah, well, we'll take I

Ryan 1:00:45
think that's the greatest point. It's like they like you think about that is like, I don't know how old that kid was. But like, like, that is something that has made that kid grow and do something that you know, most people who have diabetes, I don't know, don't even you know, don't even think about sometimes, you know what I mean? Is like there's a kid doing that. Like, of course you can do it anybody

Scott Benner 1:01:05
can do 118 year old motivated by wanting to have candy. And, and he motivated then the story of him motivated me to like, I was like, I wonder if I could just do that with every food. And then once I figured all the food out, then there must be similarities. And then and that's how it works. Now like, I have to tell you, uh, you know, even though Arden's looping at this point, I still like I used to just look at a plate and go seven units do seven units do Oh, pancakes, oh my god, do 15 you know, like that kind of thing. Now I just looked at it, and I go, what's that? pancakes Oh, do 100 carbs. It's the same thing. It's just I just, you know that I reversed the math in my head. Like instead of thinking of it and in units, I think about it and carbs so that the loop will do the right thing.

Ryan 1:01:52
Oh, I do it definitely by the units as well. Yeah, that's all it makes. I don't know it's easier for me. But I agree. It's the same thing back and forth. Now.

Scott Benner 1:02:00
And and when something goes wrong, like I messed up pancakes the other day, I think it's why it's in my head. And it was the was not enough Pre-Bolus like I used enough insulin had the Pre-Bolus been longer. But because the Pre-Bolus wasn't as long as it needed to be I should have added four units. And by the way, that's not math for anybody. That's just what I know about Arden. Like, don't just think four units is the magic pancake fix because that's not how that works. But as soon as I saw the arrow spin up, I just sent our gitex I was like Bolus for more units like now. And we opened the loop Bolus for unit stop the rise, brought it back down, close the loop up and started right over again. So it was that but that kind of stuff now, I don't even really have to think about and and I think everybody can get to that spot where it's not overwhelming your time. Like when I see like old school diabetes, people who've been online sharing about their diabetes, you know, for decades upon decades, I sometimes feel badly, because I think they got caught in a time where the sharing was about how hard it was and what went wrong. And that became their brand. And it still seems to be Do you know to me, like when I see somebody with type one who's got who's had diabetes for 30 years, who's in their 40s going like, Oh, I can't believe I'm bouncing all over the place today. Again, this makes me feel so sick, blah, blah. I'm like, you really haven't figured this out yet. Like Like, you know, like you could figure this out. Like you're almost willfully not figuring it out now or you've just deluded yourself into believing it doesn't exist and other life doesn't exist. But your blood sugar does not need to go from 50 to 300 to 60. Like it's just that doesn't have to happen. You know, you can you can get on top of it a little better than that. And it's not unknowable, and sometimes they act like it is. Did you ever have time Ryan where you were just like wildly out of sync with how to manage?

Ryan 1:03:58
Guess 100%

Scott Benner 1:04:01
Wow. But you wouldn't know what it looks like because you didn't have a CGM, right.

Ryan 1:04:05
Hmm. I had it with both both with without a CGM. And with the CGM. Again, I've gone through periods of different things and you know, you know, I think like, you know, alcohol has a big thing to do with it, how you eat, where you're, you know, where you're kind of motivation is, and again, when you're in your 20s I think it's different. You know, you're, you know, you kind of feel invincible you kind of feel like you're you can do whatever so, I think that was part of part of me. So, yeah, and I just didn't, I didn't, I didn't, I felt like sometimes you feel like you know, you feel like insulin is somewhat can be a burden and it's just like, I don't feel like dealing with that right now. And you know, I know I'll be alright because I got the basics down, right. You know, if I, I know I'm not going into the the 30s or whatever else but I have and I've done it over and over And, you know, you've had to have, you know, Jamie's had to call an ambulance to say like, you know, wake them up, you know, and do that kind of stuff. So I mean, that's like, those are things that have that have definitely happened to me. And, but it's, it's just something that you learn from and you can't look back on the past you just kind of going to go forward and really kind of, you know, dig into it. So no, no,

Scott Benner 1:05:25
no, it does. And I think it's a big deal that you were able to do that too. Because like I said, I'm not, I'm not calling anyone out. I've seen it in my personal life with friends and online. But there are times where if you've had diabetes for too long, you just get stuck in the idea that this is what it is, and there's no fixing it. And you throw your hands up in the air, but you got me your your mid fives now you you know that there's another way to? That's really cool. Jamie, are you there? Yeah. What was it like calling an ambulance for Ryan?

Jaime 1:05:55
I mean, it was really terrifying.

Scott Benner 1:05:57
What did you think was happening? I'm sorry? How did it feel? Like What Did you feel like? What's happening to him in the moment?

Jaime 1:06:04
You know, Ryan, I don't know, like, you can talk about it. So I just want to respect your privacy. So there's, there was a few times he had a seizure once and that twice, actually, those were really scary. So I've called him and I've also administered Google gun, which is like, really hard to do, and your hands are shaking like crazy. But, you know, it's sort of hard because, you know, I don't even know how to answer that question. It's terrifying, because you don't want to make the call the wrong call, right. So I know that kind of stuffs for him in the sense, you know, sometimes it takes a little bit, and then you wake up, and you can take care of it. But you know, those times in my opinion, and whether he agreed with me or not, doesn't? Yeah, I don't know, I didn't always know. So, but I would rather him be safe. So. So they were terrifying. But we haven't happened in a long time. And I feel like his, his care in general has evolved so greatly as has our relationship and both of our understanding of, of diabetes together. Like it's, at the time I like, it was so hard and so scary. And you know, it's a little traumatizing, I think, for both of us for a while, but I feel like we've learned so much and come so far that I can load on it now and not, and sort of be like, grateful that we're on the other side. And, um, yeah,

Scott Benner 1:07:29
I listen, I've had I've seen art and have to seizures. And it is, you know, it's horrifying. And I'm hearing from you that there's a an extra added consideration back then. Which is Ryan about the pop up awake and tell me I shouldn't have called 911. Is that like, like it like making the decision too soon? So you have to deal with that on top of everything else that's going on?

Jaime 1:07:54
Yeah. I mean, I want to be clear, like, it didn't matter more to me to keep him safe and make possibly the wrong call. Like, I think that's the better way to deal with it. In this these particular instances, but you know, anyone who has, I think in general Orion, I would say that, like for a while, I wouldn't feel his lows, like for a while. And I think that is like the greatest and best thing that has changed for him. And so sometimes, and again, in our younger years, like, I think when you have a low blood sugar, you can be kind of confused and kind of like distrustful because you feel weird. And so that could be like a really hard element of it of always knowing, you know how to trust your gut as far as like, doing the right thing. And I don't think that element even exists anymore. I feel like we sort of just know and trust each other and there's no, do you know what I mean? Right?

Ryan 1:08:50
Yeah, no, I think it's Yeah, no, it was just again, I think it was just a different time. And they think, yeah, I know, then, you know, again, like, I feel bad about some of this stuff, too, that I put it on to Jamie, like, you know, and, and that's like, where I've always tried to, you know, you know, kind of keep it to myself to be like, No, I'm managing this, nobody else has to do anything or whatever else. But it also kind of enlightened me as well as that, you know, I can use some help with things as well. So that's really good. But you also did hear Scott on there that she told me that I evolved that was pretty impactful as well to me.

Scott Benner 1:09:26
I don't know. I heard it too. I thought a lot of insightful stuff. God said in the last three minutes. I'm being serious in case I seriously think that was one of the best moments of the of the podcast was what we just got talked about there. It it's very illuminating for other people listening and that you, you know, if you ever want to, like really understand the, you know, the interplay of like a marriage of any kind, like Ryan doesn't want to put a problem on other people, buddies, but if he gets low and doesn't realize it and can kind of become belligerent. He's putting a Different problem on other people, but it's just that we all want to protect our loved ones so badly. You know what I mean? Like, that's what I heard is Ryan wanted to protect you from having to be responsible for him. And, you know,

Jaime 1:10:12
sorry, I just and I have always like, pushed for and like, want everyone, I you know, I just as a as a partner, and as a parent of someone who might someday want a partner like, I don't any you like, Ryan, you and anyone with type one, like you are not a burden, like your loved ones want to be there for you and help you and they would rather be able to help you on the front end and make you feel bad on the back end of Alo that went terribly wrong has not, you know, happens, like, you know, I mean, I just, that was something that I always really, really hoped that we all like would can understand. And we do now and you know, it's just none of no one is a burden when type one and I just actually thought there was like an episode I was in, I don't listen to them in order because my kids are two and five. So the amount of time I get to listen is like very random. Yeah. Um, and so I started with like, a lot of the technical episodes, and then I sort of scattered depending on what my mood was, and I listened to, there was one of your after dark episodes when I heard a guy talking about his ex, like making him feel about wearing a device. And I just was like, so horrified. And I just, if a person will tell you, one has someone who is not in their corner or like, ever make them feel bad about a single thing like they're those people are not for you. They're not your people. Yeah, you know what I mean? I agree,

Scott Benner 1:11:38
I tell you that I think if my friend Mike would have adopted that attitude, he might still be alive, actually. Because I think he tried so hard to not show people as diabetes that he didn't take care of themselves. So I think it's great that Ryan did it, and that you put like such very kind words to it for other people. If you have type one diabetes, and you're around people who are making you feel bad about it, or you don't feel like you can share it. Those aren't your people. I think that's a great way to put it. No, thank you for that. That's great. I mean, it would have been better if this kids were making so much goddamn noise, Jamie but No, I'm just kidding. I just had to break up the seriousness that's I don't need future Ryan crying in the goddamn grocery store. Right now, Ryan? No. Can I Can I finish by asking you how you felt about hearing her saying that?

Ryan 1:12:40
No. I mean, it's, it's awesome. And I know that we've already learned that we've talked about this stuff. So it's not this is nothing. This is nothing new for me. And I, you know, I appreciate, you know, Jamie, in every sense, and she's always been in my corner. And that's, that's, you know, I

Scott Benner 1:12:54
could only hope for that for somebody like that for for Ellie when she's when she's older. So you know, that's, that's all I can. That's all I can say about it is really, you know, Jamie's always been there, you know, and she always will be, I have to tell you, talking to you guys makes me crystallized that my next. My next great trick needs to be to pass this to Arden. And I've always known that and been trying to do it very slowly. But I think we're getting to the point now she's 16 and a half. And I mean, she's taking, but I just set her up to take her sh T's yesterday in our acps. Like, I don't want her care to devolve because she goes away to college. I don't think it needs to. And I think there's a way to do it. And I think there's a way to do it and share it at the same time. I think it might be one of my, maybe one of the gifts I can leave on this podcast is this, like an open conversation about how to do that. So that so that, you know, because you hear the adults that Come on, they just say the same thing that they also like, you know, well then there was college, and then I pulled it together like like, just like well, you know, there were four years where I almost died a bunch of times didn't really care about my blood sugar. And then I realized later that I shouldn't do that I want there's got to be a way to not do that. You know what I mean? In a way that that kids can still go to college, you know, so

Ryan 1:14:13
I think there's like and again, like I my belief and again that you know, at least only five so i don't i don't know how we're gonna go about the next Jesus. I don't know, you know, I don't know, we're gonna do tomorrow, but I you know, I don't know how we're going to do the next you know, 10 years or so. But you know, my thoughts are just kind of educate her as much as possible on it so that she feels comfortable with it. So she feels comfortable. I feel like you know, and then building that trust with it as well so that you know if, you know she went to a party and she got drunk and her blood sugar's dropping late, you know, it's okay that I call her and just be like, Hey, what's going on? Like, you know, your sugar is going really down or a friend picks up and just be like, hey, you need to do this and and and make that be okay that it's that something that you know that she feels comfortable with? To be able to reach out when she needs it

Scott Benner 1:15:01
now Yeah, we've got a you've got a, I have to we all have to write find a way to make their normal progression through that time when their brain doesn't work. So well still still mean healthy as far as their diabetes goes. And I think it's doable. And I'm going to try to do it. So hopefully it'll work out and we'll talk about here on the podcast over the next number of years. Yeah, that that. It's really insightful. All that was you guys are terrific. Thank you very much for doing this.

Jaime 1:15:34
Thanks for letting us invite ourselves on your show.

Scott Benner 1:15:37
to prom. Let's see for people listening. You're like, I wonder how you get on that podcast. You just badger the guy and he lets you on. If he thinks you're interesting. Oh, by the way, should we call this episode Ryan and Jamie say a lot. Probably. Jimmy, where are you from? Originally? I'm assuming Boston, which is why you're there. Where are you from? Originally? Like, where are you from?

Jaime 1:16:00
I am from like New York in Connecticut, actually.

Scott Benner 1:16:03
Okay. Okay. And and Ryan's from Jersey. And you guys just made it more towards Boston? Yeah, cuz neither of you sound like you're from there. But you sound like you live there. In case you're wondering. What does that mean? You know, I get called up here. I don't mean like that. Not just sounds like you

Ryan 1:16:24
shouldn't even do it. You know, I got the jersey thing going on. You know, I'm from South Jersey. So you know, it is what it is.

Scott Benner 1:16:31
Brian here from Philadelphia slightly east, right?

Ryan 1:16:35
Yeah, yeah. Yep. Yep, exactly.

Scott Benner 1:16:38
Yeah, up here. If you're down far enough, nobody thinks you're from New Jersey. Just so you know.

Ryan 1:16:41
No, I believe me, I know. I'm from I'm I'm from like, you know, we're from Pennsylvania. That's how people say, you know, so or from nowhere, one of the other, you know,

Scott Benner 1:16:51
one of those in between places. Anyway, you guys were seriously terrific. Is there anything that we didn't talk about that you would like to?

Jaime 1:16:57
I just think one question, and I know you probably have to go, but I'm just I just can't go on forever. Jamie. No, I know, one of the fun. Um, so I know the Arden was like older and you'd always didn't have a CGM. So I was kind of wondering like, when did you start being bold? Because like, we definitely tried to be bold when we can, you know, hashtag bold of insulin. But like, I also feel like with younger kids, I mean, I feel like you could do a whole episode just on like the variables with little kids. So like, when did you sort of start?

Scott Benner 1:17:28
Well, I'm a I'm a bad measuring stick because the technology didn't exist when I was younger. I managed Darden for a long time with syringes, and a freestyle meter that was about two inches long. That's all I had. So the measuring stick, the best that I can offer is the people who listen to the podcast who I've had direct contact with, who have little children. Now those people all seemingly have CGM. But I'm watching people with infants and toddlers. Keep amazing blood sugar's without frightening lows. So it all depends on how much the stuff that you hear on the podcast makes sense to you, I guess. Yeah. You know what I mean? Like, you don't just, you don't I mean, like, if you don't put on three of the five lug nuts and take off, just like this is enough, we'll be okay. Like when you but when you really feel like you've got the car, and it's dialed in, and it can handle the speed, then you go out and see what it can do. Right. And I think that's how people listening do I get to look at people through the Facebook group and, and see their different situations, and I get to talk to people privately, some people pick it up quicker, more quickly than others. But I think that I'm trying, I don't think I am trying to hone the idea. I said it's in people's minds, Basil first, then figure out Pre-Bolus thing, then figure out like glycemic load and index so that you can make good decisions about how much insulin different foods needs, then you need to learn how to correct blood sugars that get out of whack without getting low. Like there's, there's these steps that you can take the you could take it any age, and to say that basil first, whether you're a year old, or 10 years old, that's just it right there. Nothing in my opinion, nothing else works when the basil is wrong. And so it's basil first. Then you figure out like I had a lady sent me a chart today. And it's just like, I don't know what's wrong, my kids almost no carbs, she's like, 20 or 30 carbs a day. And I looked at and I was like, she doesn't Pre-Bolus her meals. It's just obvious. So I said, Do you Pre-Bolus she was well, when I can. I'm like, well, that's your problem. Like, I mean, your basil looks okay. Her Basal not great. But her Pre-Bolus is are so bad. I can't tell what our Basal needs. Like so, you know, and so, I think that I mean, it's it seems like self serving, but I think it's 400 Ours at this point, but you could sit down and listen to this podcast and come out the other side of it as good at this as I am. Like, I think that's what the podcast is for.

Jaime 1:20:08
Right. And we have like, we've we've taken a lot of a lot of steps in a hurry. 123 like, and I think her, her management is really great. I just was kind of curious about like,

Scott Benner 1:20:19
I don't know, ask me a direct question. I'll answer.

Jaime 1:20:23
I don't think I have one. Which is why it's not coming across very well. I was just kind of wondering when you started like, but again, it's sort of hard to compare what we have now to what you were, we're working. We know

Scott Benner 1:20:33
Yeah, me now and me, then are not the same person. Right? Me then is how you got me now. That's how bad I was at it. I was just terrible at it and didn't want it to be terrible. So I fit so everything you hear me talking about now that like it's all like just do this, or I did that like this is this is me with a just a scan of top of hindsight and focus and paying attention. And now I'm just trying to put it out there so that this becomes the normal way people talk about diabetes so that everyone else doesn't have to be the terrible me. You know what I mean? Because Because before diabetes management was this thrown to the wolves, sink or swim, the lucky survive. That's how it went. And that was just how doctors did it. And that's it was all okay with everybody. And only the people who did well got to talk about it online, and everybody else just put their head down. And that was it. I don't think that has to be that way for anybody. I think even if you don't have a CGM, getting your basil, right, is doable. You could test a lot for a couple of days and figure it out. And you know, seeing things and reacting to them like in kids growth, or as an adult, like big changes in exercise, or how much you're moving around during the day, like being aware of those things. So that you don't spend three months going, I don't understand why my blood sugar's low, like, you know, like so that you so like, it happened to me recently, like, you're gonna hear about it on an episode that comes out in a couple of days, Arden got sent home because a COVID. And her basil needs dropped significantly, because she wasn't. I'm thinking partly moving around so much at school and partly dealing with the anxiety and stress of the day. And her bit her basil went from one point to 2.9. So a lot, you know, and, and so I think once people can see those things, you can kind of stay flexible, and and make the adjustments along the way. But I don't think there's a I don't think at this point that I see just some like black and white. Here's the 10 bullet points. These are the answers. These are the numbers just do this. I think the answer lies somewhere inside of this podcast. And I hope like the defining diabetes, and the pro tip episodes help move people along more quickly. Because it just at some point, I realized I was like, I can't tell everybody just start listening from the beginning. You know, you'll figure it out. So I think the way you're listening is how most people are gonna end up listening.

Jaime 1:23:02
Yeah, I mean, that anyway, I mean, obviously, I mean, it would be great to start from the beginning. But no matter like how you do it, the information is just like, I don't even know the right word. It's just like, absolutely priceless. And if you can, I think I just started with like learning about 10 failing, and then bumping and nudging, and it sort of evolved from there. For me, for somebody who did not operate a bump before that. And I just it has made such a difference in what I just understanding the impact of those small, those small actions. And they made such a big difference. And it's just been great.

Scott Benner 1:23:39
Thank you. I think this podcast might be one of my only real, like, adult accomplishments, actually. So it's been one That's nice of you to say, I, I just, I don't know, there's no other way to say it, I figured out how to do diabetes, and within this podcast somewhere is your answer. And everybody's going to come to it a different way. I just learned from talking to so many people that there's no canned answer. And when there's no canned answer that leaves me having to sit in the room like you know that the the fortune teller behind the glass and I just have to sit there till somebody puts their quarter in and then tell them what to do. And I that's not a valuable use of my time. I can't I can't help there's I could help people one person at a time and I've done that in the past. But that leaves you helping a dozen people a year. And I like getting a dozen emails a day like and I'd like to figure out how to make it more because you know the success of the podcast is directly correlated I think to the outcomes for people listening. I don't know I don't think that answered your question but it did add 10 minutes to your episode. Very, very shrewd. Jamie very sure. All right. Well, guys, you guys sound like you have a terrific family. I'm jealous of your relationship. You do sound very blended and and together as one which is very Yeah, we're get it. Yeah, it sounds like it, honestly. Alright, I'm gonna I'm gonna stop the recording of that I'm gonna tell you something. So the number 37 is funny because

a huge thank you to one of today's sponsors. Je Vogue glucagon, find out more about chivo Kibo pen at G Vogue glucagon.com Ford slash juice box, you spell that GVOKEGL Uc ag o n.com. forward slash juice box. I'd also like to thank the Contour Next One blood glucose meter for being such a great, great supporter of the Juicebox Podcast and for making really great blood glucose meters. That's the thing we really care about. Contour Next One comm forward slash juice box. If you're enjoying the show, please share it with someone else. That's how it grows and how it stays so relevant. So you have the show and you're like, I like this podcast and you find somebody else who has diabetes you got to have I told you about this podcast. Or maybe you're like, hey, Doctor, would you like to know how I got this a one c Juicebox Podcast, so share the show. That's the best way to support the podcast. Thanks so much for listening. I'll be back soon with another episode.

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#523 Mrs. Whipple

Caroline has multiple autoimmune issues.

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.

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

Scott Benner 0:00
Hello friends and welcome to Episode 523 of the Juicebox Podcast.

Today I'm gonna be speaking with Caroline who has a number of different medical issues. I don't want to ruin the story for you. So that's all I'm gonna say for now. While you're listening to Caroline and I speak today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Please always consult a physician before making any changes to your health care plan. or becoming bold with insulin. Please let me take this moment to thank everybody who has bought me a cup of coffee. There's been a buy me a coffee campaign set up at buy me a coffee.com forward slash Juicebox Podcast. And there are 22 members meaning people who are buying me coffees on the regular every month. And these are their names. Anna, Amber, Laura marinda. Melanie, Cory, Jessica, Nancy, Sue, Shannon, Marilyn, Allison laryssa, Melissa, Leah blue, Julie grace, Daniel, Jennifer, and Jeanette thank you to them and the over 200 other people who have bought me a coffee. I am now sitting in a wonderfully supportive chair that has alleviated a lot of my lower back pain. Because if you guys seriously, I thank you very very much for doing that. Buy me a coffee.com forward slash Juicebox Podcast. This episode of The Juicebox Podcast is sponsored by the Dexcom g six continuous glucose monitor. Please get started today. Or just learn more@dexcom.com forward slash juice box. This show is also sponsored by Omni pod makers of the Omni pod dash, and makers of the Omni pod promise. The Omni pod promises simple. And here's what the promise says. There is no need to wait for the next big thing. Because with the Omni pod promise you can upgrade to our new pods latest technologies for no additional cost. As soon as they're available to you and covered by insurance terms and conditions apply on the pod.com forward slash juicebox. Are you on for a reason? Yes. I'm a weapon warrior. Ah, I recall. Good Good, good, good, good, good good with now type one diabetes. Yeah, that comes free with the surgery, doesn't it? That's right. It's lovely. Well, we're recording the whole time. So I'll have you introduce yourself in a second. But I want to just tell you now that about two weeks ago, I don't I just standing in the kitchen. I mean, just standing there. I started feeling this very like terrible pain. It felt like this walnut sized pain under my scapula on my right side, it kind of up under my shoulder. I was like my What is that? You know how I'm that age. I'm like immediate, like this shoulder cancer, that's probably what this is gonna like is I'm waiting to die at any moment, you know, say wait a little longer. It seems to be spreading out. It almost seems like it's grabbing the muscles that are attached to my rib cage and just pulling my rib cage tighter. And before I know it, I can't breathe really. And I'm just gonna I'm certainly like, everything like that. And I'm having trouble. Well, it gets worse and worse. And so I just aggressively massage the area for a number of days. And probably like four or five days later, I was like, I feel so much better. Like the only time I can feel it pulling now is if I'd like bend over to the floor. You know, like try to grab something and pick it up. And even just with my right hands, I was like I did it. I'm doing some weird muscle spasm and it's gone. I'm good doesn't happen to me that often. Well, like Monday, like a week, you know, a week after I was like, this is fine. Now. I still I still have this sort of doll thing in my shoulder. Like I can't leave it can't get rid of this. And then all of a sudden it feels like it just reaches up and grabs into my like, it's like it's like it went from reaching down into my body to reaching up and it just froze my shoulder up in my neck. And before I knew and I was like laying on the sofa going like I'm gonna die this is it like you know, just in this amount. immense pain. So Oh, somebody Well,

Caroline 4:34
yeah, well, not really not really what I did just eat lunch, so hopefully this will work its way out.

Scott Benner 4:41
What's next? I was gonna say I wonder where your alarm was. Anyway, long story short, I woke up yesterday and couldn't move. So I went to urgent care. Really I was just drug seeking. I just needed a flexor all I needed. was like I don't know what's up. Go ahead and examine me and then please give me a muscle relaxer at the It's just I was asking for, and I'm doing way better today and to be honest, I think I'm gonna feel even better tomorrow. But I am loaded on flexor all in case you're wondering. And if I say something really stupid, I'm gonna need you to stop me. Okay, like you'd be the adult. Well, I'm, I'm loaded on pain pills. So Oh, yeah, you are? Yeah. You have like a monkey on your back or something. This ought to be fun. Did you get yours out of the local patient first?

Caroline 5:32
No, I mean, I'm still I have a I got a lupus diagnosis also a few months ago. And so I'm in the process of just still figuring everything out. So I still see a pain management doctor who's still got me on pain medication.

Scott Benner 5:48
Tell everybody your name real quick, so we can keep talking. Caroline Roberts. That's good enough. I am. Okay. I got loaded out there. Yeah, we're just gonna, we're just gonna keep talking. So tell me so let's um, I want to get back to the lupus for a sec in in a little while.

Unknown Speaker 6:05
But

Scott Benner 6:07
what how did you while you're on the podcast, tell everybody.

Caroline 6:12
So I was diagnosed two years ago with neuro endocrine pancreatic cancer. And actually, a few months prior to that diagnosed with multiple endocrine neoplasia type one, or me and one. And that's a genetic disease. And so I was diagnosed with that. And then they did some scans and found a spot on the body and tail of my pancreas. And I had a distal pancreatectomy last year and got clean scans after that. And then this past February had some blood work that was very elevated for that specific tumor marker and ended up having the Whipple procedure in in July, I had the Whipple in July of this year,

Scott Benner 7:13
it's a serious thing. They're just they go in and they took your entire pancreas or

Caroline 7:18
took the entire pancreas took the gallbladder and part of the small intestine,

Scott Benner 7:23
cheese. You know what, here's why. It's a shame, right? Because this thing, which is terrible, is in my mind makes me think of the guy from the Sharman commercial from like the 60s and 70s. You know, they would tell you not to squeeze the Charmin toilet paper commercial occasion. Right. Right. And his name was Mr. Whipple. That's right. I would just, you would just think that if they were going to have like a horrible medical procedure, you would make everyone go all but that pleasant man's clothes, the toilet paper, right? Yeah. That's not fair. Oh, and everyone says, Yeah. How about give it something more scientific? Or? I don't know. I don't know what came first, the whip or the Whipple but for certain, right, right. Oh, wow. Well, that's terrible. Are you married?

Caroline 8:10
I am married and I have twin 12 year old boys. That I homeschool and I have been homeschooling them for five years. Okay. So prior to COVID

Scott Benner 8:24
through all this you like through your surgeries and everything. You just kept doing that? Yes. My kids teachers seem to take sabbaticals every time they bumped themselves on the wall, but I guess it's okay.

Caroline 8:36
Well, I have to say it's, it's been a challenge. But, you know, we were already kind of in a good groove with it. So it has been okay.

Scott Benner 8:46
I would guess. Excuse me. I would guess that as long as they don't think three plus four is orange, you'll be fine. You know, that's right.

Caroline 8:57
Um, I have to I want to bring this back around, though, because you've had a doctor, Dr. Steven ponder on the podcast. Oh, my God. Yeah, no, yeah. He is actually the person that sent me for the genetic testing. And I owe him a lot of credit, because I would never have done that had he not kind of made me do that. So we had one of my boys had a false positive blood test for another part of me and one is parathyroid disease that basically, me and one creates tumors on all of your endocrine glands. And so you have to watch for the parathyroids, which control the calcium level in your bloodstream. You have to watch for your pancreas. And you have to watch the pituitary gland. And we were checking the boys every two years to make sure that their calcium was not elevated, because I have had parathyroid problems since the age of 15. I had my first kidney stone at 15. And one of the boys got a false positive, which sent us to Dr. ponders office. And he told us, you know, the lab work was not correct. But that I really needed to get genetic testing, because there was some reason why I had all of these issues. And he called me personally The next morning, and had made an appointment with me to go to their lead geneticist, and I had the genetic testing done them. Wow,

Scott Benner 10:39
that's amazing. I mean, that's a serious if you don't, I don't know how much people understand like pancreatic cancer. That just kills you. It. Yeah. Yeah, it doesn't. It doesn't take too long. And when it decides it's over, it's really over. And it happens incredibly quickly. I watched my friends. Yes. So funny. Oh, my God. It's so odd that you're saying this, because if you listen to this show, you hear me talking about my friend Mike, who has type one diabetes, right? His mom died of pancreatic cancer. It's before we ever talked about. I never talked about diabetes and autoimmune issues like this in the past. I mean, I've never, I've never even considered that till just now. No kidding. So yeah, you know, in the 80s. And prior if you just when you died, there's like, Oh, they died. There was nobody? Nobody, right. Nobody knew me. And one or the like, I don't know, she had a bit. Her thing went bad. She's gone. Now. People didn't like look into things. I guess the technology wasn't there. Really? Right. But that's great. That's amazing that he had to do that. And that it may save your life, I imagine. Right?

Caroline 11:43
Did he Yeah, I would have never, you know, checked my pancreas for anything because I wasn't really having any symptoms. So yeah, I owe him a tremendous credit, you know, for doing that for me. And then I listened. I listened to your podcast with him on and I have his book. I have not read it yet. But I didn't know who he was. I didn't know he was so I didn't know he had type one. I didn't know he was so prominent in the community.

Scott Benner 12:13
So bumped into him as a doctor because you're local to where he works. Correct? Oh, that's interesting. Hey, you know, yesterday since we brought it all up in the show, I was stopped by a, like a therapy place. It's nearby my basically I went into the, to get the flexor off from the one place that I swooped right into a place that does like, you know, massage and like, chiropractor stuff. I just I went in there. I was like, can you please take me like I made them for me. And I was like, please just, I have to, I have to be able to move like I couldn't roll over. Like if you ever had that thing where you're laying in bed and you want to turn two inches, and you physically can't. This is where I was right? So there's, you know, this physical therapist, and she's working on my shoulder and everything. And she starts asking me what I do. And it's you know, Caroline, I'm 49. So I'm like, I have a podcast. And I think she starts looking at me, like, are you gonna be able to pay the bill? You know, like, that's your job. And I was like, that's a pretty popular podcast. And she's like, really? What's it about? And I told her, and she goes, Oh, you know, my friend was diagnosed two years ago. And I was like, Oh, cool. She talked about the show. And then we just kept talking about other things. Like 10 minutes later, I was in a different portion of the room. She comes over to me she is my friend says she listens to your show. Oh, my goodness. Can I go? I tried to be cool. I go. Of course she does. She started saying she when she or something like when she walks. She listened. She hasn't listened recently. And I was like, there's no excuse for that. Tell her that she needs. I need her listening to every episode, please. Yeah.

Caroline 13:50
Well, you know, I found the podcast because a woman on the beach. I was on the beach in September in North Carolina. And she was walking past me and had a Dexcom on her arm. And I at this point, I didn't know anyone with type one or anyone that wore Dexcom. And I stopped her. We coincidentally Her name was Caroline. And we had a long conversation and she told me about the Juicebox Podcast. And as soon as I got home, I started listening.

Scott Benner 14:24
Thank you, Caroline. What's that? Yeah, hopefully she'll hear that. So you just accosting people on the beach. I said, Hey, shoulder, my arm. He just ripped out my stuff, too. What's. So I know this? It's interesting. I think there can be some consternation amongst people. Do you feel it? The difference between genetically getting diabetes and getting diabetes because someone took your pancreas out? Do people treat you like you don't really have type one? No, I

Caroline 14:55
have not had that experience yet.

Scott Benner 14:58
That's good.

Caroline 14:59
You Yeah, everybody has been really great. And you know, I'm a member of so many of these different support groups, the Whipple warriors, type one diabetes, me and one. And I think I've just got lupus. I've got so many things going on simultaneously.

Scott Benner 15:17
Yeah, if you get one more thing, you have a basketball team. I know. It's kind of crazy. So is this how old are you? I'm 42. I just turned 42 on Monday. Thank you. Yeah, of course. I mean, is there an expectation that things are gonna continue to pop up? Has anybody talked to you about like, are you on a path or

Caroline 15:39
so with me and one, you are scanned yearly. And that's a brain MRI for the pituitary, the CT of your chest and abdomen for, you know, once you have pancreatic cancer, the chances of it popping up in your lungs or your thymus, it's, it's pretty high. So I had all of those scans done last Friday. And I did have a little bit of abnormal tissue on the pituitary. I have had all of my parathyroids removed. And coincidentally, I actually had three removed at Cornell in New York City because I lived in New York City prior to 911. And then moved back to Texas, Austin, Texas, and had another parathyroid ectomy in 2006, and they transplanted part of that hormone into my forearm. And it we thought was dead because I had no parathyroid reading for since 2006. And after this Whipple surgery, it decided to wake up. And for the first time since 2006, I have a functioning parathyroid hormone level and do not have to take I was having to take compounded calcium, and like a prescribed D, like, all day, because I was having intense muscle cramping from not having any calcium production. And so the surgery, you know, caused it we think, to wake up and my doctor my endocrinologist says he's never heard of that ever happening before.

Scott Benner 17:34
After this period of time, okay, I believe that's something they do. Just why your arm I,

Caroline 17:42
because they don't want to go back into your neck. This was it would have been a third surgery if they had to go back into my neck. And your vocal cords are right there. And that's a big risk when you have that surgery, so it's easier to go back into the arm. Wow,

Scott Benner 17:59
how many surgeries have you had?

Caroline 18:01
I had to in my neck. And then I had the distal pancreatectomy and then the Whipple. Wow,

Scott Benner 18:12
that's for those are for pretty serious surgeries. Yes. How long do they knock you out? Like, like, after surgery is done? How long? You're back on your feet.

Caroline 18:23
The webull was hard. I was in the hospital for about six days. And I was also in there during COVID in the ICU, which was a whole nother layer eration of its own. Yeah. And it was during the height. Well, we now are in the height of COVID. But then we thought that was the height of COVID in July. And then I came home and you know the diabetes has been a big. It was a big part of that because regulating my blood sugar not being on a pump being on shots at first. You know, not having a Dexcom that was a big part of it at first. And I struggled with that. And I'm not I'm still not great. You know, I've only been on the pump for about four months now. And I'm still learning. I did I posted the other day I did. I don't know how I did this. But I did drop my a one C from 6.5 to 5.7 in three months. That's amazing, which I was shocked with because I my husband said you cannot cry about this anymore because apparently you do know what you're doing. I'm not so sure.

Scott Benner 19:44
You tell him I know what I'm doing and you're listening to the podcast. That's all right. Well, yeah, so a while and that was my that was my point was that you will go to sleep and you have you don't have died. You wake up, and you do. And on top of that, you just went through a surgery, that's having other impacts on you as well. And you have to get over the recovery from the surgery is a lot. But to have diabetes, all of a sudden, magically after that, is it's just a different level it and did so did someone help you with in the beginning.

Caroline 20:22
So there, you know, there was a diabetes specialists that came into my hospital room, which I understand that they have to do that, but you know, you're on, you've just gone through something so traumatic, and you're on medication. And I didn't really absorb what she was saying. And I couldn't have anyone at the hospital with me because of COVID. So I was all alone. And that was not helpful. I did have a pump trainer once I got home. And once I got the pump, my endocrinologist was amazing. He fought hard for me to get that pump. And he did it in an amazing amount of time. I actually was denied at first and apparently that's pretty common. And he ended up having to really push and I got the pump because of him. So he he called me daily once I got home. And I had a dietician that I spoke to every other day. Because eating after Whipple is really hard. Also, there's that whole other component. I was on a soft food diet for a while. And for the most part, I'm still on a soft food diet. And that will probably, you know, play a role with diabetes once I start venturing out to other food, but I eat the same food every single day. Because I'm still not, you know, it's only been four months since my surgery. So I'm I'm still not completely healed from the Whipple. But the pump lady was very helpful. But I felt like I got this don't die lesson. Yeah, and, and I've heard this a lot on this blog. I didn't get a whole lot of education. Listening to the pro tips has helped tremendously. Honestly, the only reason I dropped that a one C is from your podcast, there's no doctor told me the tips or the tricks that you have said on this podcast. Thank you. So thank you, because I think I'd be in a much miserable, more miserable place.

Scott Benner 22:55
If, if I hadn't been listening to the podcast. I'm just I'm hard pressed though. Imagine coming out of a surgery. I mean, with all the implications that yours have and all the forward, you know, even the forward thinking implications. And then suddenly, you have to manage food with insulin. I just don't i don't know how to do that. Exactly. It's not

Caroline 23:15
easy. It's not it has not been easy. Diabetes is hard. I mean, I guess I'll get to a point where I really know what I'm doing. And I understand it all. But you know, I don't know if anybody ever says that. But it's hard.

Scott Benner 23:32
People, it's incredibly difficult. And I do think you will get to a point where you where you get it for months is an incredibly short amount of time to have type one. First of all, you're able to season the fives already. That's spectacular. I think you're being aided by eating the same foods over and over again, right? Yes, definite? Most definitely. Yeah, well, I mean, look, take it, nothing. Just call it something good. This is here's the good part. I thought the same thing over and over. Because I often tell people, you know, when you're really struggling, try to mimic a meal a couple of days in a row. So they give you a chance, give yourself a chance to make a decision, see how it works out and then make an adjustment to it. Because if you go from no one completely different meal to the next two days afterwards. There's no real way to look at your data and make adjustments when you're going right food. So what does the soft food diet consist of?

Caroline 24:27
Well, my diet right now is scrambled eggs. Yogurt soup, like some small portion of like chicken noodle soup. I have some hot tea. I do eat some saltines a few salt saltines and I do eat a little bit of cheese for protein. But that's basically it. Sure eating like all of our grandmothers, basically And you know, I've gotten pretty used to it. I'm actually it doesn't bother me. I guess I could I'm that person that really could eat the same thing every day for the rest of my life.

Scott Benner 25:11
I was gonna say, it seems nice to me. I'm doing this thing right now where I'm my blood sugar's on the internet. And so have you ever. Okay, thanks. And so I started to feel this pressure to like, eat certain things. And I just don't eat very much normally. So I'm like, my wife's, like, you're gonna eat all that. And I was like, I'm gonna try, you know, and I've been snacking, like, on purpose. Like, before I came up to you to talk to you. I just grabbed this candy out of a candy dish. I didn't even want it. I was like, oh, let's see if they can they can watch this. You know, an eight so candy. But I'm, I'm not a food person like that, like I could. I could put together some simple meals and do them every day and probably be pretty happy about it. I am. I only seem to deviate when it's like fun to make something. I enjoy making a handmade pizza once in a while. Yeah, your food looks pretty good. When you posted. It looks pretty good. I do. All right. Yeah, I'm not. I mean, I've been in this house for 21 years taking care of these kids. I figured a couple of things. Yeah. Although everyone thinks I'm a terrible cook here, which is fascinating. Like, oh, that's that's funny. Arden won't let me make her eggs. Oh, gosh, you're not good at it. She make her own? Oh, I mean, she could but that's not how she rolls. She's like, once you get them, I just got done school. I'm very tired. I have a have a pinched nerve in my shoulder. And it feels like someone's driving railroad spikes in me. But let me see if I can help out. How is this for your children? Is there? Are they old enough to to do the math and go Hmm, this could happen to me.

Caroline 26:49
So I had them genetically tested. As soon as I came back positive. The geneticists wanted them tested and they both came back negative, which was amazing. My father was tested and he came back positive. His brother was tested and he came back positive. And we now know that my grandmother who passed a few years ago, probably 99% would have come back positive. All of us have had the parathyroid surgery. So, you know, we thought we had familial hyperparathyroidism. But in fact, we all have men one and that's just a part of it.

Scott Benner 27:39
Yeah. What did your would you said your grandmother died? Before you had no What? What? How old? Was she when she passed? She was 17, eight or 79? Did she have any ailments that point any of this stuff that you thought

Caroline 27:57
she she had the parathyroid problem. And actually, she was from Germany. fullblood German. She lived grew up in Frankfurt, and, you know, lived through World War Two as a child in Frankfurt, and her mother was in a hospital, most of her childhood and they called it stomach cancer. But you know, knowing what we know now, we all kind of think that her mother probably had men one. And they just didn't know what it was then.

Scott Benner 28:33
Germany exporting men one. Keep that stuff there. Oh, okay. So you're so your kids, they need to be tested more going into the future is this rock solid, you don't have it, you don't have it.

Caroline 28:45
You don't have it. You don't have it, and they can't pass it on. And I always joke and say this stops with me. So

Scott Benner 28:55
you're taking care of this. Your husband's digging around furiously for the receipt he thinks he got when he bought, you know, he's like, you can buy people, everybody understands what I'm saying. It's like, Oh, I found it. Can I return this?

Caroline 29:09
He's my poor husband. He's probably really disappointed. We have a pretty large age difference between us. And he, he thought he was gonna have this young hot wife with no problems. Who is going to have you know, all this energy? That I'm the one that's falling apart

Scott Benner 29:25
with? Carolyn, your trophy wife? Oh, yeah. I always said if I was a girl, I would not work. I would definitely do something that my parents would be ashamed of. So that I didn't have to have a job. I'm not saying that you did that. I'm just saying this would be my way to go.

Caroline 29:42
Well, I have worked. Majority of the marriage but not full time.

Scott Benner 29:48
Okay. Can we how much older than you? Is he 24 years? Oh, yeah, he's passed. Yeah, yeah, totally. Are you making me laugh on my shoulder hurts though? Oh, my gosh, tell me about the lupus diagnosis.

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Alright, let's find out about the lupus diagnosis with Caroline.

Caroline 34:18
So I started having, you know a few months ago, I was waking up in the middle of the night or in the mornings and my hands were so swollen, I could not close them. And then I was also having pain in my elbows and shoulders. And my hair started falling out. And so you know I had already established last year a relationship with a rheumatologist and so I went back to see him and he did some blood work and I had a positive test for lupus. He You know, I think the common treatment for lupus is steroids. And because of everything else that's going on, he really didn't want to put me on steroids that would suppress my immune system. So he has me on, we've been doing several trials of some anti inflammatory medication. And unfortunately, every one that I take takes about two weeks to really get into your system. So it's a long, you know, I think this is going to be a long process, trying to figure out what really works for me. But you know, lupus in itself is a hard thing to deal with.

Scott Benner 35:37
What are some of the implications of it?

Caroline 35:40
Well, if it's not treated, you could have, you know, long term damage. I know that. Just in my research on it, you know, there's stuff about and I and I listened to one of your podcasts about, I think he was a snowboarder that had lupus as well. Yeah. I cannot remember his name Sean Busbee. Right. Yes. And I know he has issues with being in the sun. And I haven't had that yet. I'm not sure if this just came on, you know, because of the Whipple or what, but it's very new. It's only I've only had it for a few months. So well, I

Scott Benner 36:22
feel for you, because it's hard to pick through those things, these medical ideas when they don't pop up and just present something specific right away. It's very frustrating. I know that um, Arden has an appointment in about six days with a rheumatologist. Because at certain times of the month her like wrists and ankles, sometimes your knees get really painful. They have to be like rubbed constantly to try to like and you can't you can rub the pain away for a minute, but then it comes right back. And now that is it's so miserable. Yeah, the muscles in her neck and her shoulders are always tight.

Caroline 37:03
I do hot Babs. And sometimes I do them several times a night. I mean, I was to the point where I was getting up in the night and having to take an additional hot bath just to get relief. Well.

Scott Benner 37:15
How long does that help for?

Caroline 37:18
Um, well, I'll stay in there for quite a while and then it'll usually take care of it for a couple of hours. So that's, that's been my go to do your I understand it, I understand the risks and the you know, hands and you know, all of that it's

Scott Benner 37:34
it's really uncomfortable. It sucks that you can't do that. And also, by the way, the steroids would make your insulin needs go up.

Caroline 37:41
Yes, that's the other reason that he did not want to do that. I don't and I I'm struggling. I mean, yes, I dropped my a one c but I'm on a day to day basis. I look at you know, people's lines, you know, on their graphs, and they're so stable, and I'm looking at mine and it's like, mountains and valleys. And you know, sometimes I get I get it, you know, more in control. But, you know, I'm still in pain, you know, pain and stress doesn't help. And I'm still dealing with all of that. And I know that's causing some of the problems with the diabetes. So I just have a lot going on at one time.

Scott Benner 38:28
An email this morning from a person and she's like, Hey, your blood sugar was really was higher overnight. Are

Unknown Speaker 38:32
you okay?

Scott Benner 38:36
Okay, I am i said i so last night I I purposefully ate like some junky food later at night so people could see. And it would be one of those things that you wouldn't think much of, you know, and put my blood sugar up like 110 but it stayed there almost all night. And you know, so you put this junky food in your system, then you go to sleep and digestion slows down, it stays with you longer, right, you know, etc. Tomorrow, I think tomorrow Yeah, probably tomorrow. I'm gonna eat like a, like a, like almost a no car, but I would eat like steak and stuff like that for a day so people can see what that looks like what happened? Yeah.

Caroline 39:17
My husband said that he his doctor was telling him that he was on the verge of diabetes and he is a string beam. He has a little belly but he is tall and skinny and can eat five bowls of ice cream every night and not gain a pound. And the doctor told him that and so he wanted me I did the finger prick on him. And you know, we we watched and then checked it again after he had like a soda or something. And it of course was like perfectly normal. He didn't have any issues at all.

Scott Benner 39:47
Right? There was a couple of days where my blood sugar didn't move around too much. That's gonna people are gonna be pissed at me. I think. So. Eat some crap. I know. It's just not fair. But it's still it's been I'm getting a lot of notes. People are finding it valuable just to see how things kind of go up and down and go up and stay. And you just really realize that these patterns if you didn't, you know, if you didn't have a working pancreas, the patterns would still be there, they would just be happening at a higher number. If you're if you're not managing well with insulin Arden and I had, we had pizza the other night. And she was better than I was for like two thirds of the stretch of the food. Like in the in the beginning third, my Bolus worked with on her work way better than my pancreas did for me. And then had I not been working, I would have seen the rise it was trying to have been sooner and I would have gotten to it sooner. But she went up like 178 for a while and she came back down. And it was interesting. Exact same time we were both like 90 again, like right at that spot. So

Caroline 40:52
see I really want to figure out pizza because pizzas on my light last meal list.

Scott Benner 40:59
Wait, wait like your last meal before like a firing squad kind of a thing?

Unknown Speaker 41:03
For before I die. I must have been. Listen, just eat on the last day and it won't matter be fine. There you go. That's true.

Scott Benner 41:13
I mean, the the key to pizza is that, you know, you need some up front. And then you need a lot of it about insulin when the fat protein rise happens. So it's mostly fat with pizza. But she had a protein with it, I think. Yeah,

Caroline 41:31
yeah, I have done it a few. I actually have eaten a little bit of pizza here and there a couple of bites and and tried. I actually had a miserable time on my birthday. Because, you know, there was the temptation to have food other than what I normally eat. And so I did have a little bit of different food. And then I was juggling, how do I how do i Bolus for this. And then I gave myself too much. And then I literally said to my husband, I said I might have just overdosed I might die tonight. You know, this is scary. I think I'll just go back to eating the same food every single day.

Scott Benner 42:10
How does it end up? Did you not use too much or

Caroline 42:13
I ended up having to compensate with drinking some juice. But I figured it out. And it you know, I got myself worked up about it because I really thought I had given myself way too much. And I probably did because I didn't eat as much as I thought I would. And but I figured it out. And it actually wasn't that bad. But it was scary. At first I saw someone

Scott Benner 42:37
online, it happens periodically they give themselves they're they're trying to give themselves their basil injection, they do it with you know Bolus instead. So now all of a sudden they put in like 30 or 40 or 50 units of insulin that's gonna start working right away. I always I'm always fascinated. They're online, like, What do I do? I'm like, like, just take your carb ratio and figure out how much insulin you just gave how many carbs you just covered and eat them? Like, it's fascinating how it happening out of order makes it so confusing to everybody? I know. It's because you I think it's because you get stuck thinking about this stuff in such a specific and ordered way that you just can't break free of the idea. I mean, honestly giving yourself 50 units of fast acting insulin. I know people who have little kids are like 50. But you know, adults use a lot of insulin with their meals. Right? You just have to look and go Okay, what do I have in the house? That's, you know, 50 units, and I mean, my my elbow, say you're like one unit per five grams. It's not that hard. You go 510 15 2020 Oh, I need you know, if I have 10 here, I'll tend to cover so I'll find

Caroline 43:48
and there's a lot of carbs and a lot of things. So it's not that hard.

Scott Benner 43:52
Yeah. It just isn't like it isn't intent. the wrong word. Let me let me do this. Let's say you put in 50 units, your one for five. So 510 15 2025. So 25 Yeah, you need like, you know, it's not that hard. It's just do it. Right. Just do the math and do it and, and they're like, What do I do? I called the doctor. I was like, eat something.

Unknown Speaker 44:18
Right? Yeah, like, this

Scott Benner 44:19
is your big chance. Remember that candy you never eat this time? You know, like, get in there like do that. If you don't have some I've spoken to somebody before didn't have anything in the house and it's not it. I'll never forget that. I will never forget getting a message through Instagram from this younger girl who I don't know. And she's like, I'm by myself and I'm out of food. And I gave myself too much insulin. I was like, why are you texting me is what I thought. But isn't it interesting? We had never met before. I didn't never spoken to her. I was the one that popped into her head. Oh goodness. So I helped her I was like, Alright, let's look around the house. See what you have. We can make it up you know, and she got a bunch of food and ate it. I just that was nerve racking for me, by the way when that happened, because what happens in the middle is she's like, you know, drops over and the last person she contacted was me, you know, I don't need those problems. Oh, my God. Well, how are you feeling? psychologically? Because it occurs to me that if I was you, I would just be up here and like running in circles and banging into walls and stuff like that. are you handling all this?

Caroline 45:26
Well, you know, it's interesting, you ask that it was really difficult with the diagnosis initially. And it was really difficult waiting to find out if the boys, you know, we're going to be positive or negative. But with each surgery, it's been hard. I, thankfully, my boys are one of the boys in particular begged and begged and begged for a dog a few years ago, actually, the summer before my diagnosis, and we gave in and got the dog. And I, he has been my, my saving grace, he, I walk that dog between nine and 10 miles a day. And that is how I keep my mind clear. And it's also great for digestion. I mean, they say, you know, walking aids digestion, and after a Whipple procedure, they really want you to do a lot of walking. So that has helped me tremendously. I if I don't walk, I feel depressed, and down. So that's been really, really important to me. I have to say, though, that I talked to my doctor last night, and him saying that there were some abnormal tissue on the pituitary. It was kind of like, oh, now there's this to worry about, you know, now there's that going to be that at the back of my head, to think about all the time, how many

Scott Benner 47:03
glands do you have left? Can we just get rid of all of them now? Like, no, I'm just like, take it. But it's almost like I don't know. I'm gonna find out what it does. It's in charge of your growth hormones. contributed growth, development and functioning of other indicators. Well, listen, it's in control of growth and development. You're already an adult, I'm done. We're growing and it helps functioning of other endocrine glands, which you've mostly don't have. So exactly, they're gone. It's only the size of a pea. It says, That's right. Okay, cause you that much trouble.

Caroline 47:49
Oh, gosh, you know, after the distal i had i this after I had the distal pancreatectomy. He said he got everything. And you know, we were really happy for that. And then I had my follow up appointment, and he came back and he said, Well, the pathology says that you have all of these little neuro endocrine tumors, just speckled through your pancreas. And so then there was that worry for until I had those yearly scans. And then once I got those scans back and they were clear, I had like, two or three weeks of Oh, okay, I can move on with my life now. And then I got the lab work back that was, you know, elevated for these neuroendocrine tumors. And that's when the decision was made to go forth with the Whipple. So, I don't know, it seems like every time I take a step forward, I take a couple steps back.

Scott Benner 48:47
I feel like I know what you mean. We've been working on trying to figure out figure Arden out for so long now that you know, just the diabetes alone seems like kind of an afterthought. It began with it began with her, her thyroid diagnosis, right and then everything was fine for like a year and then a year later, all of a sudden, like she was gonna die. Just we didn't none of us realize I talked about on the thyroid episode, but she had grown so much she wasn't getting enough thyroid again, as a replacement. But she was like, we were taking her to doctors to see if she had like serious heart trouble because her blood pressure was so low. And you know that that driving somewhere with your kid in the car and you never that you just oh, we're just gonna go find out like being an adult is terrible. You really, if you're gonna have a baby, like if you like, just live your whole life by yourself. You'll never go through all these Harz but it's just you know, it's I seriously do mean that, like you're driving somewhere, and you're like, Am I gonna get to this place? They're gonna tell me my daughter's heart doesn't work. Like is that what we're going to find out? And then then they give you information and you're like, Well, that's not even helpful. And this didn't answer any questions. So then you have to go back home again. It's not like the doctor goes home. It's not Dr. House. Like, they don't go home at the end of the day and go, Oh, that little girl, Arden today. Let me just sit here and think pensively until I come up with an answer for these people. Like you left, the tests they ran didn't give you an answer. They're done with you now. Now you have to figure it out again. So, yeah, it's just we got got her thyroid levels back up. And then not long after that, she has to stop playing softball, because the muscles in her shoulder or neck are so tight, she can't even do it anymore. And, you know, now you're trying to figure that out. So we went down the thyroid road and figured, you know, went through things piece by piece, and it takes forever, you know, you're like, well, it can't be your blood sugar. But at one point, I even changed part of the reason we tried to gasp, because I was just like, Well, let me see, like, Could she be allergic or insulin, and that didn't do anything. And, you know, it's just, it feels like you're thinking about it all the time. Like either what's going to happen or what you have to do about the thing that is happening?

Caroline 51:04
Right? It's exhausting. And the walking is the only thing I found to like, keep that, you know, down to keep it under control.

Scott Benner 51:16
I don't usually make statements like this, but people who don't have health issues have no idea how lucky they are. Right? Yeah, it's agreed, agree with a lot. And I'm glad they don't know, I'm not wishing it on them so that I'm not like you, you need to understand, but there's just, there's so much to it. And it's just this the littlest things like my son is at home because of COVID made a pretty stressful like semester. And then he gets done. And he's like, Oh, this is great. I'm finished. And then he has this plan for the winter, he's gonna do a lot of extra eating and lifting. He's trying to put on a certain amount of weight for the spring. It comes upstairs one day, and he's all freaked out. He's like, I started lifting weights, and I got my skin got all right, no, Michi. We're like, why he like? So you know, we just did anybody change laundry detergent, or something like that. We had added something recently. So I was like, Alright, let me re wash all your stuff, and blah, blah, and did everything. And then it happened to him again. And now it's two weeks later, and it's continuing to happen to him. And our anytime he exerts himself or gets really hot, I guess the histamine like the adrenaline, the men, right? And he's breaking out from his waist up. It doesn't last long, but he can't keep working out. Right. And so, you know, the doctor that we spoke to said, this happens to people, as a community or medical community, we really don't know why it most often does just stop. And here's a way to try to match through it. And you know, he's talking about it. But in that moment, I was like, my son's whole life is playing baseball. Right? Like, he told me he can't lift weights or run around. Because I don't know what he would do then. And, you know, the doctor said, It's okay, like, it's gonna, you know, we really expect it to go away. But I told Kelly privately yesterday, I was like, if that kid can't keep playing baseball, I don't think I can handle it. Like, I don't think I can handle anything else bad going on happening. And are not even like, close to your thing. Seriously? Well, yeah. We all everybody has their own thing. Yeah, just don't walk that dog off appear. Okay.

Caroline 53:31
I know. He's a Siberian Husky. And, you know, you can't walk him enough. He just, you know, he would keep walking

Unknown Speaker 53:42
us keep you, he just drag you through the water out, out under the sound.

Caroline 53:46
This child that wanted this dog he there was one in the neighborhood that would walk past our house every morning before school. And he hid in the bushes outside of our house every morning, and waited to pet that dog and to ask if you know, if he could, you know, pet the dog and play with the dog. And he, I mean, he campaigned for this dog for so many years.

Scott Benner 54:11
He got it and now you're walking around. That's right now it's my dog actually. Does he pay attention to the dog at all?

Caroline 54:19
Oh, well, they do that. And actually, they were extremely helpful. When I came home from surgery. They did all of the walking and care, you know, and they they do care for him. But he really, I don't know if that's the breed. But they have a one person that they're really really loyal to, I guess because he's a pack dog. And, and I am his one person.

Scott Benner 54:41
Yeah. And that's just the way it is. Our dogs Listen to me and almost nobody else in the house and I wish it wasn't me because then I get this. Hey, the dogs have to do this. They have to do that. And I'm not even there like you do it. Right. Listen to me. Oh my god. She I think she secretly loves that that dog doesn't listen to her. Somebody gets hurt out of everything. Yeah, let's I've said it before. I'll say it again. Try to have children. If you do, okay, don't have too many. Definitely don't have a dog. It's so much work, you know?

Caroline 55:11
Well, and I've got like, you know, hairballs every doll rolling through your house. Yeah. I mean, it's just he's blown his coat. And so it's like, you know, a couple times a year, it's pretty bad.

Scott Benner 55:28
To say your accents delightful between the Texas and the North Carolina a little bit of the North. It's very nice. Well, I can't I can't tell. So, no, you really you would do. You'd be great doing voiceover for like, you know, Southern lady, or something. Okay. Well, I was just gonna say your husband can't walk that dog, right?

Unknown Speaker 55:51
Well, he won't. He's smart. He's like, love my dog. It's a mistake you made not me.

Scott Benner 55:57
Right, exactly. But I just had my pancreas out. That's right. I get those kids.

Caroline 56:04
I know, I keep trying to tell them you know, I've just recovered from pancreatic cancer surgery. I've got type one diabetes and lupus. Can I get a little help here?

Scott Benner 56:14
That's not enough yet. No, I I've spent the last couple of days being mocked walking around my house. Because I move in a certain way with this muscle thing. I'm like, Oh, geez, like it comes. I can't keep it in. Oh, so dramatic. I hear from across the room. I'm like, this really hurts. I know. You said that your muscles are tight. I'm like, no, it's my whole, like, if you cut me in quarters, like through the midsection of my torso, you know, and then up and sideways and just took the top right corner of me. It was just like a rock of muscles that weren't the doctor's like Now bend your head to the right. And I was like, it moved like a half an inch. And I was like, that's it and he goes, Oh, okay. I was like, I can't turn my head this way. Because it hurts. And every time I lift up my arm or you know, like I'm in the room, holding my right arm with my left arm because I don't want to fall down, you know? And you're at the doctor's, and they're worried about you, you get home, and I can hear them. Like, look how he's holding his arm. They're making fun of me and I can hear like, you know, this is gonna go away. And my wife actually said to me last night she goes, this was not a great time for this to happen. Oh, gosh. Sounds like something I would say. I planned it. Like, no, this is not a good time for this app. I'll tell you what. She gets sick once in a while, like everybody does. Yeah, I'm gonna have to tell her when she's laying in bed and dying. Like, you know, like, hey, please get me this. I'm gonna go you know, this is not an ideal time for this to be half. Right? Right. What happens to me? If I say the back honor? Yeah, great. Shoot, that would make her not sick. In three seconds. She'd stand right up and call divorce attorney. I can't believe I'm sick. Also, but you said to me with my arms, that's different. You're being a baby. So Seriously, this really hurts. It's not just like a little muscle pole. Like I'm, you know, in a bad way. And it's going to pass like the muscles are gonna stop spasming and it's gonna be fine. But this is not an opportune time for this to happen. That's right. Yeah. Like imagine someone says you. Yeah, I don't want to walk the dog. In all honesty. This surgery you had. It's getting in the way in my life. Yeah, great. Well, listen, kids normally 12 maybe they don't know any better. Right. Are you? Have you? Have we not talked about anything that you were hoping to talk about? I should ask.

Caroline 58:39
No, I think we did. I you know, and listening to you. I thought of course I had not listened to your other a lot of your other podcasts. But and I did after I you know, send you the email. I listened to the girl that's in Louisiana. Yeah, that had she had a I think it was a kidney disease that caused her to have an operation that was similar to the Whipple which I thought was really interesting. But, you know, when I emailed you, I just wanted to say or bring awareness to the Whipple warriors, people that you know, we we have Type One Diabetes because of surgery, you know, and, and also to men one, because it all, you know, can end up we can all end up in the same community because of these things. So, I've been really thankful to you and to Jenny, I actually reached out to Jenny to try to get some more education. And I had an appointment with Alicia and the integrated diabetes office, who wears the same pump that I wear I wear tandem t slim and I had a first meeting with her And I haven't gone forward just because I have so many other issues that are it's not just diabetes. It's right now, so many other things going on at the same time. That makes it a little bit difficult, but I intend to, you know, get some more education from her because I thought they are fantastic.

Scott Benner 1:00:22
Yeah. Jenny always says to me, she's like your people. Like, why are they my people? She's like, they come from the podcasts like, people, just like their people. She's cute. She's just, she doesn't mean they buy. She's the way she talks. It's fantastic. We're speaking privately. She's like, I got a bunch of messages from your people. The other day, I was like, You mean people listen to podcast, she's like, Yeah, but yeah, and you, you kind of bumped into what some people bump into. I think people want to work with Jenny, because they hear on the show. But Jenny's pretty booked because of the show at the same time. So it's hard to get in with her sometimes.

Caroline 1:01:00
Well, and just talking to Alicia in the one time that I talked to her, she gave me a trick, you know, for my pump. That completely helped me and fixed a problem that I was having cool, you know, every day. So she, you know, and she was I want I want originally wanted to talk to Jenny. But Jenny said Alicia is the guru for tandem to Islam. And so she knew what to do.

Scott Benner 1:01:25
And she did work. Yes, absolutely. Um, but I'm glad you found them. And Jenny really is delightful. I, yes. I'm actually recording with her tomorrow afternoon. If I can lift up my arm, which I'm doing pretty good. I was so worried about doing this with you. I was like, What if I'm sitting there just in pain the entire time, but I'm doing okay. Yeah. I would do a pill. Yeah. Yeah, I'm doing okay. magic pill, the magic pill that makes your muscles like, like, putty. Right? But I went into the urgent care and, you know, guys, like, I'm just gonna do a couple of, of X rays to be sure nothing structurally wrong. I don't think there is. And I was like, yeah, there's not but whatever. Yeah. So I'm sitting in there. And she's like, stay still. She's like, you're fidgeting. And I said, I can't just let my arm hang like this. I said to her so bad, you know? So she takes a picture, and she goes, are you wearing a diabetes thing? And I was like, Oh, I am on my arm. Just give diabetes. I was like, No, I'm doing it. So people on the internet can watch my but she's like, why did I start explaining to her? She so that's so nice. My friend has diabetes. And I was like, ah, everybody's friend has diabetes. So but so I go back into the room to wait for the doctor after the film's and for whatever reason, this little chair in there. I felt so good sitting in the chair. And he comes in he goes what we're gonna do I was like, Look, man, whatever you gonna do? Forget it. Just let me take this chair home with me. I said this chairs perfect for me for some reason. He got Yeah, he was so funny. Because I don't care. Take it that's like, oh, wow, I like this. But I left the chair behind and just left with a flexural. So it's all good. I just don't want to take a bunch of drugs. You know, if I don't have to, you're you're taking a pain medication for the lupus right?

Caroline 1:03:12
Well, yeah, for lupus and for abdominal, you know, I'm still having a lot of abdominal cramping pain. I'm on a pretty large list of medications still.

Scott Benner 1:03:25
Do they continue? I'm sorry, say that those medications continue forever. They just because of the surgery? Um,

Caroline 1:03:34
you know, that's a good question. I mean, I have, I have hypothyroidism as well. So I take thyroid pill, and of course you do. But that was caused because of the parathyroid problem. So but you know, I take if you have your pancreas out, you got to take a pancreatic enzyme every time you eat. So that in itself, you know if you ever, um, I'm doing the little small meals all day long. Instead of just like three meals a day, I do, like five small meals. So that's a lot of pills in itself. And then, you know, anxiety medication and you know, yeah, things like that.

Scott Benner 1:04:18
We definitely need that allows you what happens if I don't take the enzyme I eat

Caroline 1:04:25
severe stomach cramping, probably running to the bathroom. not pleasant experience at all.

Scott Benner 1:04:35
Just from not taking the packrat again time. Right? Well, and that's every time you take something in so is it is it as much as like if you walk past the candy dish and grab four m&ms, you would need that enzyme.

Caroline 1:04:48
Probably not that but i and maybe I'll get better at this but with diabetes, the snacking thing. You know, I haven't unless I've you know bolused for it. I'm trying not to put anything in my mouth.

Scott Benner 1:05:03
Thinking about that. I have to tell you. I've lost a few pounds were in the CGM. I bet you have cuz my wife's like your watch. She's like, you're you're not eating as much. And I was like, yeah, Mike, everybody's watching. That's funny. Yeah. This is a great way to like, you know, I know it's 2020 and we're not allowed to shame people anymore. But apparently that would work because I'm just like, I'm not eating that. Yeah, who would have thought right? Then those people will know, Ben lunch. He's like, Who cares? I'm like, I don't know. I care a little bit. But it's cut my snacking down. Like, and I don't I guess I don't even know what I was eating. But I think I've lost like five pounds this week. So that's amazing. Yeah, I was still very fat. When I got on the scale of urgent care the other day. I'm like, She's like, get up on the scale. I'm like, why? My shoulder hurts. What is this about? right away? I just got in here. I still have my jacket on. But get on that she's like, Can I take like, you know, can I strip? She was no. Probably way. I'm probably wearing like four pounds of clothing. Probably. I just jumped up and left again. I was like, Alright, fine. If this is how it's gonna be. They're making fun of me at home. Might as well let's do it here too. You know, that's everywhere. No, but seriously, there's something. I mean, I'm partially joking. I'm not eating things. Because the people watching completely, although there have been a couple times I was like, No, I'm not gonna do it because of that. But it's just me, I'm aware of it. Like being able to see your blood sugar is it's meaningful. You know, like, you look at it, and you think I don't want my blood sugar to go up. You know, like, for this, like, I don't love this enough to do that. And so I guess that's probably what happens to you as well. That's right. I'm learning some things here as well. That's good. Yeah. We all are every day. Caroline, you're, you're you're I just gotta say this story is good entertainment. Right? Whoa, I don't know. I was just like, yeah, I mean, first of all, you everyone listening is like, Oh, I'm lucky this Caroline lady, she got real problems. But I mean, I hope that things go as well as possible for you. I realize it's got to be like a long road ahead to, to hammer things out. And it's funny how I don't know which thing to let me ask it this way of the issues that you have now. Which one would you give away? If I let you give one of my I have my answer. But I'm waiting for the diabetes. Really? Interesting. I would have thought you're gonna say the lupus?

Caroline 1:07:44
Well, you know, I've been dealing with pain like that for so long. I might be used to it. But the diabetes seems heavy. It seems hard. I mean, I know I'm gonna get there. I know, listening to you reading you know, the education. Part of it. I know, I will get there. But it's, it seems hard. It seems heavy. It seems like it's all it's the thing that is always on my mind. All day, right now.

Scott Benner 1:08:19
I hear that. It's very consistent, that's for sure. You don't get to like I came home yesterday. I was pretty beat up. And my my wife I think just kind of left the kids to their own like, you know, to feed themselves in the afternoon. So that turned into like most case study is or some wraps or something like that into Chinese food. You know? And Arden's blood sugar was I was involved it for four or five hours because I was asleep on the sofa, like I got no position. And I was like, I'm comfortable. I'm going to sleep because the night before 6am was the first time I went to sleep the night before I could not find a position to sleep in. I finally found that at six o'clock I slept for like three or four hours went right out to the urgent care. So I was not involved in Arden's like diabetes care yesterday. And I thought she had eaten one thing, and it turns out she didn't. And we saw this kind of stocker higher blood sugar like 150s and it was just couldn't get to come down. And it was at the end of the pump sites a part of me wanted like this hell Kelly, like I think should change the pump. And then a part of me thought, No, it's all this food. It turns out, I get in bed at like one o'clock and Kelly's like Arden's blood sugar so long as you give her more insulin, she goes, No. And I was like, why? And she was I thought you gave her enough because I kind of jumped back into it in the evening. And I'm like, okay, we went all through it again. And then it turns out this one thing that I thought she ate that would have accounted for this if the Bolus was done poorly, she didn't actually. So it was one o'clock and I said your your choices can Bolus now and a half an hour from now and nothing happens. Change your pump, or just change your pump now and Bolus so we go to bed. So right one, it was like 115 we got up. I'm like, you know, I'm like moaning because of my, my arm, my arm wrapped up in my shirt trying not to let it fall down. Or Kelly's like if they come help me. And I was like, okay, so we went and did it woke Arden up and put this pump on her. But you know, was the right thing to do? Yes, it was happening at 130 in the morning. And that's your point is that it's just always there, you know?

Caroline 1:10:28
Yeah. And I've had that I had that 130 in the morning, you know, several times. And the other thing, is it all it seems like it's a moving target constantly. And but at first I thought, Oh my gosh, I'm the only one with this moving target. And I'm never going to figure this out. And listening to your podcast and talking to other people. Realizing I'm not the only one like this, it is a moving target. That's just what diabetes is. And, but listening to you and talking to other people, I realized that and that has given me a lot of relief. Glad.

Scott Benner 1:11:13
I'm very happy for you. Any kind of relief, I'd be happy for you. And I know right now I'm thinking the same thing. Like I would take a little relief because I'm like rubbing my chest while I'm talking to hurts so bad. You don't have to apologize to anybody about medical stuff. In every situation, you win. Don't worry about. Okay, yeah. Don't Don't think like that. You're covered. You're grandfathered in on this one. First. I would like to restart this episode and just ask you about hooking an older guy, but I can't write your 30s you got married or younger? Twice.

Caroline 1:11:51
I got married at 28. And I got married in August. And I was pregnant in November with twins. He was probably pretty excited. Oh, yeah. He was like, let's do this. Let's get

Scott Benner 1:12:07
your 28 Yeah, that makes him like 52 when you correct? Yeah. See, my math is okay. When it's important that I can that I can whip it together pretty quick. Right? How did your parents enjoy that? Was that because How old is your dad compared to your husband? He's younger. He's a couple years younger. They pull you aside?

Caroline 1:12:31
No, no, no, I have pretty much been headstrong my whole life.

Scott Benner 1:12:38
So whatever. I think whatever works works, but I was just what I was imagining just your dad, just one time being like, Hey,

Caroline 1:12:48
you know, it's kind of funny. It's funny when they're together. But it I'm an old soul. And so it does work. It really works.

Scott Benner 1:12:57
Listen, boys are terrible. I talked about here at the time. I'm 49. I'm almost an adult now. So I think I seriously maybe another decade. Maybe right around right before? I'm 60 I think I'll pull it right together. Yeah. So I hear what you're saying. Kelly's Kelly's definitely an old soul too. And I don't like I would have trouble. I did have trouble back then talking to girls my own age. I was just like, oh god, there's nothing What are we? Oh, are we gonna talk ever about anything important? You know? And I really don't care. Like just put something on. Let's go. And Kelly's like, that is very comforting. She's only a couple years younger than me. I Didn't you know? Yeah, I just bumped into the cradle. I didn't completely he didn't Rob. She's only a couple of years younger. All right. Early. You're very nice. You're delightful. I enjoyed your laugh. You kept me calm for some reason. You have such a consistent speaking pace. It's slowed me down. I appreciate that. Good. I hope you feel better. By well come with these flex rolls. couple more days. I want to be fine. Okay, yeah. Well, I'm looking forward to the rest of the podcast so keep on going. Yeah, don't worry. I won't stop doing this. Look, I'm recording I'll tell you. This is the first day I almost took a sick day. Last night I thought maybe I should email that person just push this off. But I always just think I already make you guys schedule them so far in advance like it seems really terrible to ask the push it off, you know, so

Unknown Speaker 1:14:32
yeah, I would have understood I don't

Scott Benner 1:14:36
know you wouldn't have you would have been like wait your shoulder and your back hurts. Oh,

Unknown Speaker 1:14:39
boo.

Scott Benner 1:14:39
Get on the thing. Turn the microphone on. I got lupus. I got whip ball. I got like I got a there's something in my arm. Like type one diabetes. You don't want to do this. Why again because you're stiff. You would have been making fun of me like my family was if I would have done that. Right. Trust me. I know what happens. Well, thank you very much for doing this.

Unknown Speaker 1:15:03
Yes, thank you.

Unknown Speaker 1:15:04
I appreciate it.

Scott Benner 1:15:10
Hey, huge thanks to Caroline for coming on the show and talking so openly about what's going on in our life. Thanks also to on the pod makers of the Omni pod promise head over to Omni pod.com forward slash juice box to see if you're eligible for a 30 day free trial of the Omni pod dash. Thanks also to the Dexcom g six continuous glucose monitor dexcom.com forward slash juice box Get started today. We're just go find out more. When you use my links that helps the show make the clicky there at Juicebox Podcast calm or in the show notes of your podcast player. clicky clicky clicky clicky is good for Scotty. Thank you

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