Scott Benner 7/18/24 Scott Benner 7/18/24

#1256 Fertile Myrtle

Diagnosed with type 1 diabetes at 30 weeks pregnant on Christmas Eve, Jenny faced a tumultuous journey, including DKA and numerous hospital stays.

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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 1256 of the Juicebox Podcast.

When Jenny was 31 years old at 30 weeks pregnant with her second baby, she was diagnosed with type one diabetes on Christmas. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box. I actually took a break from recording this to order myself some shorts for my upcoming vacation from cozy earth.com I used my own offer code juice box and I save 30% off of my entire order. By swear that just happened. I don't know why I'm so easily distracted. Having an easy to use and accurate blood glucose meter is just one click away. Contour next one.com/juicebox That's right Today's episode is sponsored by the contour next gen blood glucose meter. This episode of The Juicebox Podcast is sponsored by the ever since CGM. And sure all CGM systems use Transcutaneous sensors that are inserted into the skin and lasts seven to 14 days. But the Eversense sensor is inserted completely under the skin lasting six months ever since cgm.com/juicebox.

Jenny 2:08
My name is Jenny and I live in Wisconsin. I was diagnosed with type one. And about it was Christmas Eve of 2021. Christmas Eve. It was horrible. Yeah. Yeah. So yeah, but I was at the time. 31 years old. So yeah, that kind of was very a jarring experience. I was also 30 weeks pregnant. No. Yeah. So it was just it was a very tumultuous time and I was in Ohio. There was a lot going on. I feel like was just

Scott Benner 2:48
did you say Ohio? Like just telling me you weren't at home at the time or because you have some problem with Ohio?

Jenny 2:55
No. We were traveling to see family and yeah, it just kind of everything hit the fan. Okay. On Christmas Eve when we were there.

Scott Benner 3:04
I was gonna say you're not from Wisconsin, are you?

Jenny 3:06
I am actually you were born there and raised? I was are you saying that? Because you don't hear an accent?

Scott Benner 3:12
I don't hear it the same way I expect it to be. Yeah.

Jenny 3:16
Well, if I said like bagel or bag, it's like the nasal a.

Scott Benner 3:22
That's probably you. You're a little more nasally and not as Canadian. Right?

Jenny 3:27
Well, I am from Madison. So it's like the southern part of Wisconsin, which is I think, a little bit it can be a different.

Scott Benner 3:35
Thanks, Madison like a college town? Yes.

Jenny 3:39
Isn't that where Jenny? She went to UW Madison.

Scott Benner 3:42
I don't tell Jenny's personal details on that. But my brother, my brother moved there when he was young and never came back.

Jenny 3:49
Oh, yeah. We love it. It's I grew up here. And then I actually went to Ohio State for school, okay, and then met my husband. And then after he completed grad school, we were like, Let's go anywhere in the country and live and like start our own world. And then he got a job at Madison, my hometown. So yeah, I know, it was like one of those things. And of course, his family was like, did you guys plan this? Like, are you trying to go to her family? Oh,

Scott Benner 4:16
there's no way his mom didn't think that you hooked him into that whole thing.

Jenny 4:20
I know. It was it was a complete shock to me. And we were just kind of being directed by his career path. So it was let me

Scott Benner 4:27
tell you how it went. She goes, she gets her friends together. And she goes, I'll tell you what she did. She waited till he had his advanced degree and she knew he could make some money and then he got her finish. Then she showed him the goods and then brought him back to Madison. That's exactly I know.

Jenny 4:41
That's exactly I'm pretty sure she's still 10 years and I think she still thinks that

Scott Benner 4:46
she's hilarious. Well, what bad luck I just love the idea of like, the world is our oyster. Let's go home. Exactly. Yeah. And for him. I mean, I don't know what's worth Ohio or Wisconsin like they both sound I mean, no offense, but

Jenny 4:58
no Well, it's funny you say that yesterday we had like, 70 degree day and today is 16. So stupid. It's like what the heck?

Scott Benner 5:08
I would imagine people would be running around on the streets yelling. I'm crazy. I feel crazy. Yeah. Well,

Jenny 5:14
yeah. Well, it is funny. It's like if you catch people like on a sunny day in Wisconsin in the winter versus like a cloudy, rainy, snowy, gloomy day, you get to different people. No, no,

Scott Benner 5:25
I am. I imagine that's true. Okay, so let's pick through this a bit. How many kids do you have?

Jenny 5:32
I actually just had my third at the beginning of this month. No, geez. Yeah. All right. So

Scott Benner 5:37
what how old are they? What are their ages? My

Jenny 5:39
son is three and a half. He'll be four and a couple months. And then my daughter is one and a half will be two. And then my son was just born out February's second. Wow.

Scott Benner 5:50
I don't I don't want to be crass. But you are pumping them out.

Jenny 5:55
I know. Yeah. We're, we're well aware of that. That's like our dynamic right now is just like we keep looking at each other. Like, what do we get ourselves into? Yeah.

Scott Benner 6:04
I mean, you should stop. I feel like you bought like a parakeet. And then you looked up and you had 10 of them. And you're like, I don't know why I did this.

Jenny 6:10
Well, that's the funny thing, too, is we also have two cats and a dog. And so it's like, literally like you look around and you're like this is a zoo. Like we're in a zoo. Do you work? No, I don't I after my daughter, my second child was born. I stayed home with the kids.

Scott Benner 6:25
So you're telling me that your food in the house? Like if you opened your cabinets right now there'd be food in it?

Jenny 6:33
I think so. Yeah. Okay. So

Scott Benner 6:34
you're telling me that if I get a grad degree somewhere and then moved to Wisconsin, I can take care of another person and three children, a couple of dogs and some other stuff. And do you live in a house? You do? Yeah. What the hell kind of magic places this? Right.

Jenny 6:51
Well, it's Yeah, I mean, it's, it is were kind of isolated out here in the wilderness, Wisconsin.

Scott Benner 7:00
My husband rides a cow to work and, yes, the milking. So yeah, but no, that's, that's astonishing. Like you couldn't live here with three kids. And one income?

Jenny 7:11
Oh, well. Yeah, it's actually funny, you say that Madison actually has a very high cost of living it just for our stories. Really, I think a lot of like, we got into our house right before a big like, the market, you know, kind of like a timing thing. I feel like it really worked out in our favor. Are we avoiding

Scott Benner 7:29
saying the husband's like a hedge fund manager or something like that? Like,

Jenny 7:33
no, not at all. So yeah, it was just it's, I feel like we we lucked into a lot of like timing things as well as just yeah,

Scott Benner 7:41
no. All right. Well, good for you. I mean, seriously, that's wonderful. Although you seem a little too comfortable making the babies I think maybe that should stop. I mean, you're not gonna have more kids. Sorry. Jen is like,

Jenny 7:54
well, I feel comfortable with three. My husband has always been like four to five. And so we're navigating? Do

Scott Benner 8:02
I have to be? Is he a prepper? Do I have to be looking out for this guy?

Jenny 8:06
Yeah, no, I don't know. I mean, it's just, I think it's kind of like he's literally has this dream of like, sitting at the end of like, a huge dining room table and looking around, it'd be like, This is my, you know, all my kids. Like my broom,

Scott Benner 8:18
he's gonna be at work while they're at the dining room table. And they're all going to be fighting over the last porkchop. So we better calm down.

Jenny 8:26
I think that is it is kind of a weird, you know, thing to think through of like, How many kids do you want? What type of parent and how involved you want to be and it's crazy.

Scott Benner 8:35
Have you ever considered maybe he doesn't understand how sex works? Maybe he just likes the sex part. What if you told him that it was possible to do it without making a baby? Do you think he'd be like, Oh, I don't need this many kids then.

Jenny 8:44
Yeah, I have to run through this and slides with him of like, this is how it all works.

Scott Benner 8:49
Yeah, I mean, I gotta tell you, I know a lot of boys. And if every time ended with a baby, each person would have 10,000 babies.

Jenny 8:58
That is, yeah, I one of my friends is like, you're just like fertile, Merle over there. What's going on? Like, okay. Oh, Jenny,

Scott Benner 9:04
are you trying to name your episode?

Jenny 9:08
This is so hilarious. It's like my husband's gonna die. He's like, Yeah,

Scott Benner 9:12
well, listen, he's got it. He's halfway to death. Now. He's probably exhausted from having sex. All right. Wait a minute. So you're the only type one is there any other autoimmune. My

Jenny 9:21
sister has celiac, which I was trying to think is that about it is, and weirdly, the same time I was diagnosed with type one, she was diagnosed with celiac and also very pregnant. So it's like, those are considered.

Scott Benner 9:39
Now when you said very pregnant or do you just mean towards the end of the pregnancy?

Jenny 9:43
Oh, no. Near the end of it. Oh,

Scott Benner 9:46
I wasn't sure if you were like she was so big. i You should have saw. Yeah. I wasn't sure if that's what you're going for. I

Jenny 9:51
have no place to speak to that was like, again the most way to my life and this last pregnancy. So Wow. New barriers.

Scott Benner 10:01
I'm a trendsetter, Scott. Exactly. So okay, so first, so you're 30 weeks pregnant 31 years old in 2021. And you get type one diabetes. So prior to that you were maybe around 28 ish and pregnant, maybe 26. And pregnant Is that about right? Doesn't need to be exact.

Jenny 10:20
This was actually my second point. Oh, that was your second. Sorry. No, it gets very muddled because I literally was like, I think I've been pregnant or breastfeeding, like, more time than I've not. I mean,

Scott Benner 10:31
slow down. Maybe, maybe give your nipples and your Bucha break or second reverse.

Jenny 10:38
Screaming the same thing.

Scott Benner 10:42
By the way, I found a way to say that it doesn't have to be believed. But yeah, I think that's I think that can stay with it. But seriously, like, Jesus Christ, Will you calm down?

Jenny 10:54
I know. I know. So yeah. Well, it what was interesting was because I actually so we found out with my daughter, we are pregnant in like July of 21.

Scott Benner 11:05
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Jenny 14:11
A actually ran a half marathon, like while pregnant. And then right after that was the gestational diabetes test. And it came back like slightly elevated. I actually just looked the other day and it was like my ANC was six. Oh, and so they were like, Oh, you have gestational diabetes. So like they're like let's, you know, try to work on your eating and then we'll retest you. And then they did that a couple of weeks later. And they were like, Oh, this is like a I don't even know what they call it like a strong case of gestational diabetes. So you need insulin. And so when I we are going to Ohio for Christmas, I was already like use it. I think it was just that long acting insulin at that time. It was just kind of like a low level dose. And I don't even think anyone was looking at the numbers. It was just kind of like You just need a little help with your numbers. And so using that my son had gotten norovirus at the beginning of December, and then passed it to me right as we were leaving for Christmas to go down to Ohio. And so they actually believe that is what triggered my T one D diagnosis. Is

Scott Benner 15:19
it not possible that that wasn't gestational diabetes, that it was just an a slow onset of type on

Jenny 15:23
it, but the weird thing is, is so when all this was happening, so it was basically like the drive down to Ohio, we stopped to eat somewhere, and I like randomly checked my sugar. And it was like, over 200 And I had never seen that before. And so I had been on the phone with the doctors. By that time we driven all the way to Ohio, my sugar was climbing three 400. And they were like, You need to go to the emergency department. And so we ended up going there. And then I was basically in DKA. And so they did all of this testing over Christmas Eve to Christmas. I vivid had this vivid memory of waking up at like, five whenever a doctor's round, you know, really early in the morning 5am On Christmas Day, and these doctors are like huddled in my hospital room. And that like the lights are off because I'm sleeping obviously. And it's so it's like dark and moody. And let's do one doctor like sees that I'm like kind of awake. And he's like, we think you have type one diabetes. He's like, you go back to sleep. We'll like talk about it later. I was like,

Scott Benner 16:28
why I don't think you understand how sleep works. But okay. So

Jenny 16:32
but then because of that, like, I don't even know how they came to it. They did all this other testing, but I don't have the antibody or type one. Okay. So they were very hesitant to label me. And they were just like, we don't know if this is just like your gestational diabetes going wacko or what, but like, we're gonna put you on more insulin. But like I said, we were in Ohio. And so it was like this moment where like, I don't want to be stuck in Ohio while this is getting sorted out. But they had brought my sugar down. But it wasn't stable at all. I didn't know that at the time. But it was basically I think they just like kind of gave me a bunch of insulin and they were like, we'll write you a prescription you should get home and like get this figured out with your primary care provider. And so,

Scott Benner 17:20
because we don't want to deal with you, right.

Jenny 17:22
And to be fair, I think we were a little persistent in wanting to leave too because it was like, Yeah, we weren't home. It was Christmas. My son was like, one, you know, he's like, unaware. So anyways, we leave my family in Ohio, jump in the car, we're trying to call these pharmacies to like, get my prescription filled, that's like on the route home. And so we're like in the boonies of Indiana. And I'm like picking up this insulin prescription I've never used before I pick up the insulin, and they didn't tell me that I would need to also get syringes. And so then we had by that time I had gotten on the road, I'm like looking in the bag. And I'm like, how do you put this file of stuff into your body. And so it was just like a really ridiculous situation. So then we had to stop again to get needles. And so then I'm like, This is so bizarre, I have a bag of needles, you know, as we're driving along. And so by this point, my sugar's are again, uncontrolled. The doctors are checking in, because obviously, I'm 30 weeks pregnant, they're concerned about the baby, they're concerned about me. And we get to Chicago, like the Chicago area, and I'm on the phone with our doctor in Madison, which is like an hour and a half away. And they're like, We don't feel comfortable telling you to come to us, you should go to emergency room in Chicago. And I'm like, they

Scott Benner 18:43
didn't want you to wait, that. I mean, it's only a couple hour ride. Right? Exactly. That's

Jenny 18:47
what we were thinking. But I was like, I have my son like, we're literally not gonna check into this hospital. It's an hour and a half away from our house. And you guys know what's going on. Like, it just didn't make sense. But I think they were just really trying to kind of cover themselves with like, your sugar's high, we want you to go. So we ended up with they literally made me say, I acknowledge that I'm going against medical advice. And we drive the hour and a half, like call my dad, and I'm like, can you come get my son and so they literally meet us in the hospital parking lot. I go in, I get admitted. I'm once again in DKA. And they basically just triage me there and try to bring my sugar down again. And I really this is sort of hazy for me because I don't I was very still unaware. I didn't know what type one was. There was no that the doctor in Ohio who was like we'll have a discussion later that discussion never happened. So it was just like, I had no clue what was going on. And they ended up coming to the same conclusion of like, even though you didn't test for antibodies, we think you have type one, but again, for some reason, and this is so bizarre to me is I was in the hospital for one day, and they sent me down to the diabetes clinic. Like to like get, you know, the schpeel. And I was so still so sick, like, I remember feeling so nauseous the whole time that the provider is speaking to me. And then they literally wheeled my wheelchair out and they're like, Okay, we're going to discharge you because you have all the things you need. And that literally, as my husband goes to the parking ramp to get the car, I started vomiting. And they, they said, Okay, you know, I think you're still getting things out of your system, they clean me up and sent me on my way, that

Scott Benner 20:29
the technical term for it, or, you know, the bad out, don't worry.

Jenny 20:36
But then of course, like, because I was so not sure that I wasn't, you know, taking in any information from the provider, I didn't have a clue what to do with my insulin or anything. My sugars once again, climate at home. So then I'm on the phone with the hospital, and they were like, You need to come back in. And so then finally, I think something clicked for all of us. And it was like, we can't just have like a overnight stay for you. So basically, I was admitted for the hospital, and then ended up being about a 10 day stay. Because I with the norovirus, and it was still kind of pandemic time, it weren't sure if it was like COVID, or like if there was, you know, crazy reactions or something. And I ended up having these really severe migraines, and I've never had a migraine in my life. And so that kind of sent them on this trajectory of like, Do you have a thought I had, like a spinal cord injury for some bizarre reason. Like,

Scott Benner 21:33
I'm not laughing. I listen, my mom died in Wisconsin in the hospital. And I'm just I'm just saying, it's not as surprising to me.

Jenny 21:42
Okay, so well, and I think I don't know if I wasn't communicating to them. Well, but so I ended up getting, I had an MRI, I had a chest X ray, a CT, and a spinal tap, altered, like literally, they're like, We rolled out absolutely everything that could be wrong with you. We just think you have diabetes. It was like you

Scott Benner 22:04
have really good insurance where they like, ooh, pay day.

Jenny 22:08
So I don't know. And I actually was chuckling because I was looking through my chart yesterday. And they also tested me for West Nile virus. Like

Scott Benner 22:16
they were like this suckers got good insurance, see if she's got West Nile virus. I mean, now that all the badness is out of her, she's still sick. It doesn't make sense. It could be Spinal Bifida.

Jenny 22:28
So yeah, and this whole time again, because it was pandemic time, I couldn't have any, like visitors for prolonged periods of time. And so was like this 10 day span where I didn't see my son, I'm super pregnant. I couldn't see my husband and like, he wasn't allowed in with any of the procedures for like, I got a spinal tap by myself. Like, I just remember, like sobbing throughout the whole procedure, because I was just so overwhelmed. So like, What the heck is going on? But yeah, so then

Scott Benner 22:58
they say, it

Jenny 22:59
was a pretty horrific experience,

Scott Benner 23:03
after these people by luck didn't kill you in that hospital. And let's just say, that's exactly what happened. You just luckily survived their care. After that happened. You got to learn about type one diabetes, and you're 30 weeks. I don't know how to do all the consensus, but four times nine to me seems like it might be. Let's see is that 36? So you were like about ready to make an M plus, you've already pushed out one kid. So this one's going to come out more timely. And right.

Jenny 23:35
Oh, right. So it was like an I also actually forgot to mention in the midst of this, like, I don't think it was the drive from Ohio to Wisconsin. But it was very shortly after I got checked in maybe the second or third trip to the hospital that I was told that my provider for my like, what do they call it? Oh, the gynecologist and the oncology, the people who are like, basically watching my baby. She sent me a message and the my chart thing and was like, we're dropping you as a client because you have type one. And so you need 30 specialists specialty care. Yes. And I remember being like, Is this a joke? And like, again, you know, waterworks, like, everything was just like falling apart, basically. And so and then, you know, it was just chaos. And so what ended up happening is I like was like bawling to the providers in the hospital. And they realize, like, there's just poor communication. It was like, they were trying to transfer my care to the specialty clinic, but it just, it came out super wrong. And

Scott Benner 24:40
so we're dropping you as the client is now it came out. Well,

Jenny 24:44
and yeah, at this point, I'm still working. And so I had told my employer that I was like, not able to come into work, but then they're like, Okay, when are you coming back? And I didn't know. But then I also started they are saying, well, now that you're high risk pregnancy, you're going to have to have two appointments a week. weak, and you know, so it was just like, they had no concept that this would just be like, life altering for me. And so I just felt like two and a half weeks of just complete, like, horrible, like overwhelming emotion

Scott Benner 25:14
overwhelming note, no idea what's happening, your health still isn't balanced well, but are they addressing your type one at that point like, are you on Basal insulin? Are you learning how to do those things is that even

Jenny 25:26
I have this memory of like this, it was like three different providers coming in and drawing this same chart on the whiteboard in my room of like, what Basal insulin does and what bolusing does, and it's like, just, you know, like, the Basal is kind of this flat line on the bottom. And then when you Bolus, it's like this wavy line. And that's really like, kind of my core memory from what I remember, fully. So I guess at this point, I had a I was very suspicious. Like, the doctors and just like the care, I just felt like it had been horrific up until this point, but then it was like a complete one ad and I started going to this. So my maternal fetal medicine doctor, who also they coordinate with a CD. And she was like, This is my full time job. I only see pregnant women, like, I'm gonna get you through this, right? And she was like, an angel. And I've actually been able to work with her. And then for my third pregnancy as well. And it just, it was like, night and day. She understood it. Like she understood how overwhelmed I was, she got me, like the correct doses. And really just honestly, by eyeballing she's like, Okay, this is like your height and weight. This is where you've been your sugars. Like, let's start here, and it was almost like perfect settings from the get go. For me.

Scott Benner 26:45
It's surprising what you can accomplish when you know what you're doing.

Jenny 26:49
So that was like, it was almost like, Are you real? Like, I just have had such a horrible experience with other things. That

Scott Benner 26:57
was just the kid came out. Okay, this didn't hurt the kid too bad. Yeah, so

Jenny 27:01
the only thing is, she was like, a little bit bigger than my first baby. And of course, they're like, well, like people diabetes have big babies. And that was like, I don't think that's always true. But so that was kind of what they checked. Yeah,

Scott Benner 27:14
I mean, yes. And at the same time, you didn't really like you were having impacts from diabetes throughout the pregnancy, you didn't really know it until they got to, you know, look at your A once he went and said it was like around six, and then all this, like, what's the cascading timeline from the first time that somebody says to you, you have, you know, gestational diabetes, until you realize you have type one, like, how much time goes in between there? So

Jenny 27:39
I think I was diagnosed with gestational diabetes of like, October of 21. And then Christmas Eve of 21. A couple more months. Yeah. But it was probably going on before that, too. Right. It was just I think, I don't think they test you for gestational until around them. But

Scott Benner 27:59
you think that norovirus pushed you over the edge, I got the whole thing running. That's

Jenny 28:02
what they they claim, I honestly have no idea. And at this point that like it literally was like they're like, you don't have the antibodies for type one. But like, we're just going to treat you as if you have type one and move on. Because this has just been horrible. So and my sweet husband, like cut filed multiple complaints with the hospital was just like this has been a horrific experience. And their response was, because you're not the patient, like we understand we hear your complaints, but we can't follow up because you're not the patient. Sorry,

Scott Benner 28:33
we can't talk to you. You're not the person we're trying to kill. Can you get them on the line? Well, no, she can't talk to you right now. Because you're in the middle of trying to kill her. And it's taken a lot out of her. Exactly.

Jenny 28:42
And to be fair, like I actually, I think our health system here is like, pretty great. It does. I think it actually recently listening to a lot of your whistleblower episodes on things. It's just like, you know, I think type one is just not on the forefront of a lot of providers minds. And so it's,

Scott Benner 29:00
I think I've come to believe that people are very good at the thing they're very good at. And then when you take them too far off of that, it turns into what you just described. Yeah. And then you had too many things going on. So, you know, I'm saying that, yeah, you had too many things going on to the confusion. Everybody gets pulled off their focus. nobody quite knows what they're talking about. They're all bumping into each other. You know, they're privately hoping one of the other doctors figures it out while it's happening. Yeah, they're like, maybe she'll get it. Laid back for a second. We'll tell them. Yeah, maybe you could figure it out with the internet and get back to us. Right, exactly. Okay, yeah, we're all in trouble. But that's that's not a discussion. You're enjoying the whistleblower episodes? Oh,

Jenny 29:42
yeah. I think. Yeah, it's especially interesting. So I also weirdly worked for the hospital system that I was receiving care from too. Okay, so as does my husband currently. So it's a very it funny dynamic, but we both are on the like, finance business side of things. We're not clinicians at all. Yeah. And so it's a very, it was a very interesting time for that. And like moving forward, I've actually shared some of the whistleblower episodes with my husband, and we kind of just like, chat about them, just because he actually works in the emergency department. But on the business side, so he has this interesting perspective of like, he knows a lot about the clinician, like, medical side, but his head is in the business world. So he sees both sides. So I

Scott Benner 30:31
don't want to say this publicly. But it sounds like your husband would be a good guest on those podcasts.

Jenny 30:39
Definite, oh, my gosh, it's gonna give him such a big head. No, I mean,

Scott Benner 30:42
if he knows the business side of the ER and wants to be anonymous,

Jenny 30:46
I'll run it by him. I mean, I do have to say he is he's a very good employee. I think that he, he's very fair. Like, I always look,

Scott Benner 30:58
I want to be clear, I'm not looking for people that don't each other. I just want to hear what's going on, you can all decide what to make of it on your own. It's not up to me. Yeah, yeah. And I also think that it shouldn't, I genuinely believe it shouldn't dissuade people from seeking out healthcare. Like, that's not my point, either. I just really am starting to think that you need to find the person who knows what they're doing. Like, if you go to the ER, you need to go to the ER with an ER thing. Like I banged my head on something, a car hit me, my leg snapped in half. These are er, things like they work great. Like I'm vomiting and I can't stop. And I don't know why they'll calm your stomach down and help you get through it. But if you want something after that from them, they don't have that. And nuance is lost on them sometimes as well. Oh,

Jenny 31:42
for sure. And I think what was at least interesting for myself, but also my husband was I think my diagnosis and just the struggle to like get clarity from what was going on, was very eye opening for both of us, because I think my husband had some health issues. But like, up until that point, I feel like I just went to the doctor, because that was like, oh, once a year, you're supposed to go to make sure you're not dying kind of thing. And like so. But this diagnosis, like totally just like tore that apart of just like, I think I had almost blindly trusted like, Oh, this is a doctor, they'll help me and like, while I still think that's true, I do think, you know, it's like I have like a diagnosis that is just not well understood by the, like, common doctor, I guess. And so I think that I had never experienced anything like that. And for I think for both of us, it was like, Whoa, like, you do have to be your own advocate. Because otherwise they'll just like you said, take you down this crazy winding path. And you're like, how did we get here?

Scott Benner 32:43
million percent 1,000,000%. Jenny, what I see happen. And I think it's pretty common, right is like urine. If you're lucky, and you get through your teens in your early 20s, you're not a sick person, then health is not a thing you think about right? Eat what you want, you're fine, nothing goes wrong, etc, you get into their 30s and something maybe sputters a little bit. And you do have that feeling like, well, I'll go to the magic person, the magic person will take care of me, right? Like, I'll go to the witch doctor, and she'll just sprinkle something over my head. And I'll feel better when it's over. And then when you start having things that are layered or difficult or chronic, and you realize that's not what this system is built for. Like I have to go find a specialist. But even often then a specialist is just a person who is working in a more focused system, but it's still a system. It's not a thinking person's game. Meaning how do I mean that they know the steps they're going to take? They know them before you get there. It's not unique to you. They don't listen to you in your store. You come in you go I have this happening. Oh, well, this is step one, when someone says that to me, right now. And that's it and you think they're, you think they're having some like, like deep personal connection with you. And you you come to realize later that 45 minutes after you leave, they don't remember you or the next time you come back. They do not recall having seen you before. You know, so that's the real world you're in then.

Jenny 34:07
Yeah. Yeah. Which is interesting that you mentioned that too, because for the brief period that I wasn't, I guess actually that's not true. I was gonna say I wasn't pregnant, but I was

Scott Benner 34:20
always pregnant.

Jenny 34:22
Yeah, just let that go. When I was diagnosed with type one, I had 10 weeks left in the pregnancy, I was just doing shock. And so then when I we found out we were pregnant with my third, I was like, I think I want to go on a pump. And I had just basically recently found out I was pregnant. I was like, okay, perfect time I'll just I want to do Omni pad. And so I reached out to my regular endo at the time, who I didn't have a great relationship with they were very they're very conservative. It's just the kind of like don't die management philosophy. I had gotten gotten that vibe from them. I reached out to get a pump. First of all, there was like no response like from their office, I had messaged them I had called. And they were just like, yeah, we're working through the orders. And I had to follow up multiple times. And finally, it came to this point where I got this provider on the phone. And they were like, We don't want to give you a pump, because it looks like from your data that you're having a lot of lows. And I was like, but what did you read, the reason why I wanted a pump was to, like eliminate these lows and to like, have more control. And they were like, well, we don't feel comfortable until you can show us that your management is like, good to get on that pump. And so they basically put up a roadblock where I was approved through insurance, and everything was a go, and they were like, we just need your doctor's basically the prescription. And then I believe everything Oh,

Scott Benner 35:43
thank you, right needs to understand what she's doing before we help her to understand what he's doing. Okay, so

Jenny 35:49
yeah, well, and have gone through all of my hospital ordeal and everything. I was like, at this point, I completely understood I needed to be my own advocate. So I ended up filing a complaint against my endo office. And that like was hilarious. It, like went up the totem pole immediately. And the next day, I got three calls from the endo office, and they were basically like, what can we do to help you along in this process, like, and it was just total, you

Scott Benner 36:19
know, we just got in trouble. So we're very willing to do our jobs. And

Jenny 36:23
so it was literally like I had worked like almost a month to get any response from that, like, figure out why they were sapping my pump orders to them. Within two days. I had the order at the pharmacy, and we were on our way. So,

Scott Benner 36:37
man, it doesn't, yeah, let me ask you a question. Because your younger person, right? Does that also prize you? Like, did you find that all shocking that that's how it works? Or how it worked for you? I mean, it doesn't work like that everywhere. It's some people are very good at their job. I'm not saying otherwise. Sure. But there's that level of apathy and incompetence. At a medical situation. Like, were you stunned by that?

Jenny 37:01
It was very discouraging, for sure. Because, again, I think it really burst my bubble of like, these doctors are like, I don't know, it was almost like, are you even on my side here, like, it felt like I was fighting them rather than like, fighting with them. Yeah. And that was an uncomfy. Feeling. Like I just Yeah, someone

Scott Benner 37:23
in my family is going through something very similar. Right now it's more insurance related, but at the same time, to see the apathy from the doctor is also very interesting. So this person, I'm not going to identify them. So it doesn't matter. But this person is been told they're pre diabetic for a year and a half now. And their agencies creeping up. So about a year ago, now, they gave her a GLP medication, and it starts helping, right, losing weight agencies coming down, everything's great. Well, then the insurance industry realizes that everybody wants a GLP medication. And they stop it. They're like, No, no, you can't write it off label. It's for type twos only. So you know, type twos, if you want ozempic, or Manjaro, you have to have type two, if you want, we go V or is that bound, you have to have a weight issue, right? This is how it has to be. They take it from her, it completely goes backwards, right? Once he starts going up again, she's working out like crazy EatingWell doing all these things like barely, like making a dent in anything, right? Like a one see, I think move down like point two from like, working out like a fiend. And just goes back to the doctrine says, Look, you know, I got, I got small children. I'm trying as hard as I can. I think you can see that I am. It's not working. I need this GLP I don't want to die. Like you know, like, start giving her the whole like, you know, story. And the doctor goes, Yeah, well, I wish I could, but your insurance won't cover it. Because you don't have type two diabetes. If we can get your agency up a little bit and get you some type two diabetes, then we'll get you the GLP and you'll be fine. And I know that's an insurance thing. It the problems and insurance thing. But the way the doctor talked to her about it, I was insulted by it. Like, you know what I mean? Like, oh, nothing I can do. I mean, just continue to get sicker. And then we'll work it out later. Right? And I'm like, oh my god, like so. The problem is this person's insurance won't cover we go virasat bound for weight loss because they would qualify for that. Yeah. But their insurance won't pay for it. And then the doctor says this absolutely floored me. Here's a brochure for a comprehensive weight loss program run by you'll never guess who bariatric surgeons. So you get to go to them. Give them all your money that you would have been happy to pay your copay on for we go over here is that bound or something that would have liked setup should have been 50 pounds lighter in six months. If they want to give her the shrug right? Instead we'll go to them. I'll work out hard not lose a bunch of weight and then they're going to suggest to me II that I have, you know, gastric bypass surgery, which my insurance will pay for? Yeah. So she goes like, well, what if I just like I don't want something that invasive, I just want to try to shoot the juice and see what happens. You know what I mean? Sorry, now, we'll put all that money somewhere else, but we won't put it where it will help you immediately. Right? So they're gonna torture her for a year, then tell her Oh, it didn't work what you did, let's cut you open now make your stomach the size of a thimble. So you can drink four ounces of juice a day. Right? And we'd be happy to pay for that.

Jenny 40:32
Yeah, I mean, well, and even it's wild to me, like the procedures, not only that, but insurance and every other hoops, you have to jump through there. But even like, I've been in the hospital quite frequently with having babies or DK or whatever, but the like protocols that they feel like that are mandated, you know, to the nurses, like I had a low at the hospital when I was just had my son a couple weeks ago. And the nurse looks at me and she says, okay, protocol demands that you drink to juice boxes. And I was like to like, you know, I said, I, you know, I had my Dexcom on I have been treating, and I had like gummy worms or something like by the bedside, and I've been eating it. Like, I like to just see kind of where we level out here. Right? She's like, Okay, I'll give you a couple minutes, but I'm gonna come back. And if it's not what I think it was, like they wanted it to be up at 8590, then we're gonna have to do the to do just boxes. And it was like this moment where I was like, You're acting like these two juice boxes are like, okay, for every situation ever, a law of the universe. And it was just it's so interesting. Like, it just is weird. No,

Scott Benner 41:43
it's the same thing though. Jenny, you're saying the same thing that I just said. She is saying to you. I don't care what would actually help you. This is what we do in this situation. Right? No one can think. And maybe that's smart. Maybe Maybe taking the ability to think away from people is valuable. Because maybe when they think they get it wrong, like I don't know. But like, you're not letting people think I go to a, you know, my kids go to an endocrinologist that is like a cash pay endocrinologist. I talked about this all the time, right. Our insurance covers that later. But we pay up front and our insurance coverage afterwards, you get an hour long. When you go into ser you sit for an hour and you have a conversation and she talks to you about everything in your life, and she listens to you. And then she tries to figure out how to help you. She doesn't say oh, that thing you just mentioned, that makes me go to step one here on this flowchart. You drink two juice boxes now. And you go I don't think I need to juice boxes. And she goes that matter? Right? The flowchart says to juice box, and then your blood sugar gets real high. And then she would have come back in and been like, well, we'll wait three hours and see if that comes down.

Jenny 42:47
Well, right, or they're surprised that they have people living with type one in the world who don't know what they're doing. Because they're, you know, it's like they get told these protocols that should work. And it's like, but it was it was an interesting dynamic to that. I just, I feel like I sound like I'm crazy. I'm pregnant all the time. But from my second pregnancy to my third pregnancy, how differently I went about the process granted, my second pregnancy, I was 10 weeks at a diagnosis. So I didn't really know what was going on. So I pretty much trusted their guidance. Yeah. And I, I think I had a low when I had my second praise and my daughter right after diagnosis. And their response was oh, okay, like, we obviously need to treat this low because I woke up sweating. I knew I was low. And they said, we'll get you a peanut butter sandwich. And I was like, okay, and you know, then it dragged out for like, 40 minutes because this peanut butter sandwich is like doing nothing. But then it was so it was just so I had that experience in my head. So then when I got pregnant, my third, it was like from the get go, I was like, I need certain things written in by chart. They were like, Oh, we'll get to that. You know, later on in the pregnancy. I was like, no, please do it

Scott Benner 44:03
now. So I don't end up waiting an hour and a half for a peanut butter sandwich to bring up a 60 butcher. Exactly.

Jenny 44:08
So I think I kind of developed this reputation. Like, it was funny, you know, the first time I would meet a doctor I was very adamant about like, I didn't want a diet restriction that I had that is in the hospital. And I wanted to control my own pump and Dexcom and so they like the first time it was very short. You could tell the doctor was very affronted. But then every subsequent appointment I had afterwards she's like, Okay, we have the notes just so you know, it was like you could just tell she didn't want to upset me but I was like, if this is what it takes that I have this like reputation in this, you know, baby area, like being a witch, like Sorry, but like it was.

Scott Benner 44:51
Is that how you felt that they looked at you like that? Like I felt like

Jenny 44:53
they thought I had very strong opinions to the point borderline like she's a little you know, all heard about it and it was like well asked me why I'm touchy. Like, I've had these horrible experiences. And, but and then it was interesting, even now, a couple weeks ago being in the hospital having I had a C section. So then I was in the hospital for a couple days afterwards, the shift change and nurses like some of the nurses were very willing to hop on board. And they're like, seems like you have things under control. I'm here for your support.

Scott Benner 45:24
Jenny, can I ask a question real quick, you had to have a C section with the third one didn't pop out like, like he was sliding into second. Like what happened? Well, I

Jenny 45:32
had a C section with my second because she was projected to be like over 10 pounds. She ended up not being but and so then they kind of just said like, it's your call, but we kind of recommend a repeat C section and my recovery with the C section with my second was so amazing. So I was like, Yes, I am. I

Scott Benner 45:51
gotcha. I gotcha. That makes more sense. I figured those kids were just coming out like paratroopers in World War Two at this point. But I got Yeah,

Jenny 45:57
no, not at all. So and actually, I went to the date of my C section with both of my C section kiddos. So yeah. Do

Scott Benner 46:06
you think right now that people are picturing a world war two movie where just troopers are just jumping out of this big airplane and opening up there? Because that was my intention when I said it. Right. I hope that's where you're all at right now in your mind, just these hundreds of parachutes coming out of this big hole. That's what I'm Yeah, that's what I want you to think about. Meanwhile, isn't that lovely and amazing, right. So I'd like to if I could with the time we have left, I want to go through your your third pregnancy. Yeah. So we see here how you set it up? You know, you got your notes ahead of time you made sure everybody knew your expectations. But then how did it actually go? I know you've got now you've got a second go round with this. The high risk pregnancy people, which you said you had a good experience with them, too. But I just want to know, like, I guess I'd like to know, like visit the visit month to month. What was your actual like real life lived experience? Yeah, it makes sense. Yeah. Okay.

Jenny 46:59
It was interesting, I think, Well, I think there was a lot of factors like, so I got on the pump, I think when I was like, maybe 10, between 10 and 15 weeks pregnant. So for the majority of my pregnancy, I was on Omnipod. And again, with my provider, the Maternal Fetal Medicine CD, she was like, a godsend for settings. She was just like, let's try here, and I'll look at it in two days. And if it's, you know, going wonky, we'll fix it right away. And so I just, I really relied on her to, like, help kind of navigate that. And so I feel like from appointment to appointment, it was how they do it is I would meet with a CD, and then I would have like a doctor visit afterwards to check out baby and everything. And like, the CD appointment, it was amazing. I loved her. And then the doctor, they would like kind of try to go into talking about my sugars. And I was like, nope, like, if I have a problem, I'll go talk to the CD. And I'm like, Oh, okay. But so I think I just I had such confidence in my support that I just was able to kind of move through. When I found out I was pregnant. My ANC was like a 6.2. And with the help of the CDE I was like 5.4 to 5.6 my entire pregnancy. Wow. Like it got better. I think she's better a diabetes.

Scott Benner 48:23
Well, you hadn't had that long, right? Yeah,

Jenny 48:26
I mean, it was like a little over a year. Okay, so So let's

Scott Benner 48:30
pause for a second for the first year that you were managing on your own. You had like a six what it wants to, like a six.

Jenny 48:36
I think I was 6.2. That's very good.

Scott Benner 48:38
Now, do you think there was a honeymoon in there? Or was this just you with managing? Well, I

Jenny 48:42
would say it's, I don't I don't know what you call it. It's, I'm not one of those people that like has like 400 to 60 or whatever, but I would definitely say I think my onesie is probably skewed a little bit because I think I fluctuate probably a little too much. Okay, so I think my management was okay, but I think it was probably my agency look maybe a little bit better than then it

Scott Benner 49:02
really was. Should have been going away with something here. Okay, so your first year, but do you think you were honeymooning or no.

Jenny 49:09
They never said that. I

Scott Benner 49:10
was Did you ever had that feeling? Like I can't believe how little insulin I'm using or I didn't need help with insulin today like I did yesterday?

Jenny 49:17
No, I haven't. And I've been super sensitive to insulin since diagnosis. So I've always had very little so even during pregnancy I feel like my amounts that she was like this is nothing are most pregnant lady. So

Scott Benner 49:32
in that first year, when you're when your blood sugar is too fast laid up in town, what was the like? Did you know why it was happening? You just couldn't like bring yourself to change it or did you not know? Yes,

Jenny 49:43
I knew it was me. I'm lazy. It was like I like I I still to this day, probably I'm not a great car counter. So it was like I would look at a plate of food and be like, eight units, and then it would be wrong. It was Like last correction, I would just, you know, and even when I was with this maternal fetal medicine CD II, she was like, you're making this way harder on yourself. I see you correcting all the time. And I was like, Yeah, I just she's like, just input your carbs. And I was like, but I just haven't never counted. So it's me. It's it's me. Is

Scott Benner 50:22
that a is that a Taylor Swift song? It's the problem. That's me, right? Yeah, yeah. Oh, maybe that could be you know, I'm really going to call this one fertile Myrtle. So I am sorry.

Jenny 50:33
Don't you already have an episode titled that?

Scott Benner 50:35
I have an episode called fertile Myrtle and I'm not aware of it.

Jenny 50:39
Is that possible? That's not true. Maybe I was. Let's look

Scott Benner 50:43
because I think I need I need to help if that's the case. Let me go to the place where I maybe

Jenny 50:49
I just alternate my podcast.

Scott Benner 50:52
By the way, the podcasts so close to 16 million downloads right now. Very exciting. Oh, my goodness. Okay, hold on. You're saying that the word fertile?

Unknown Speaker 51:01
No, yeah. Not

Scott Benner 51:03
even fertile.

Jenny 51:04
Alright, hold on. Well, yeah, manifesting it that this will be an episode.

Scott Benner 51:08
I mean, am I spelling fertile? Wrong? I can't be. Maybe like, I'd have to be an idiot if I couldn't do that. So. And Myrtle? No, I'm sorry. We do not have one. We will. Oh, don't you worry. Okay, well, so on the problem. It's me is everybody. I mean, for everything you don't mean? Like, it's, I hear what you're saying. So what you're not, you're not counting your carbs was most of your problem?

Jenny 51:33
Yeah, well, because then I would just be guessing. And so it was like, even like, they just didn't have any good data. Because they were like, Why did you do eight units here. And I was like, I don't know. Like, it was Tuesday. I also begged, like, being a stay at home parents, I think is a little bit different lifestyle because I I am able to have my phone around me and I can like take a peek at my blood sugar's like, pretty much whenever I want to. So I'm able to do micro corrections fairly easy. Whereas if I think if I was distracted, or at high pace, you know, different environment, I might not be able to do that. And it would maybe forced me to be a little more accurate.

Scott Benner 52:14
Jenny, can I can I pretend to be a therapist for a second and ask a couple of questions. Is it possible you are maybe not just trying to like not throw yourself headlong into this thing? Like, were you trying not to have diabetes? The best you could? That makes sense? Probably

Jenny 52:28
Well, I also probably think it's like, having two little ones running around. Like I think prioritizing myself was probably a big issue. Like, you know, just setting aside time, whether it is ahead of time just to learn the stuff or even just during the day, like it was just

Scott Benner 52:45
putting everything before yourself.

Jenny 52:48
Probably and that not really in a murder. So it's more of just like, Yeah, I would say it's more lazy than these, like,

Scott Benner 52:55
you don't want to be given me too much credit here for caring about it. It's got a lot more to do with a puzzle game I have on my phone and how much I love it.

Jenny 53:05
Right? Yeah, it's just like, I'm like, kind of obsessed with food. So it's like, I would just want to eat at that. Pre-Bolus And so it's just has that

Scott Benner 53:12
been your whole life? Your the way you feel about it the way the way you feel about food? Yeah,

Jenny 53:19
I think it's a kind of a running joke in my family. Like, I don't know, there's like, the the stupid one Halloween there. My mom always put out this glass jar of like candy pumpkins. Like I'm carefully over sharing this but and she like I opened the jar to take one and she was like, only one Jenny and I like it shove like five in my mouth. And I was like, Oh, I didn't hear you. And like my brother to this day will like, tell me that story. And he's like, that's just like, in my mind forever is like you. He's like, I don't know why. It's just I don't know, food is just big for me.

Scott Benner 53:59
Can I ask a question that's in delicate?

Jenny 54:02
Sure. I think I know what your what do

Scott Benner 54:04
you think my question is gonna be that way it gets me out of saying good.

Jenny 54:07
That's wait been an issue for you throughout your life? Yeah, I was gonna say something like that. No. I've never been like stick them in. But no, I'm like a nice Wisconsin girl. I

Scott Benner 54:18
was gonna say because Wisconsin thin is a different thing than regular thin. So

Jenny 54:22
yeah, but no, I've definitely I've never, I don't think I've always been like probably a little chubby. But to say that, but nothing like,

Scott Benner 54:30
I'll probably get a little chubby.

Unknown Speaker 54:32
Is that a thing?

Scott Benner 54:33
I mean, I don't know. Like, I'm just trying to gather facts. I though the only time I've ever been to Wisconsin I was and I'm being serious. I was not I'm not joking. I was gobsmacked by how terrible the food was. Like, and I mean, like nutritionally. Oh, yeah. Like I'm sure it tasted good. But I'm talking about like, I was at a restaurant once and I looked at the menu and I actually thought to myself, There's nothing here I would eat I was being serious like I can I have a salad please. And I did not want a salad and I am not a salad person. I could not see one thing on that menu that I thought wouldn't be an affront to my body.

Jenny 55:14
Were you in a city or were you in as in like Oshkosh? Okay, whatever I don't ice like I do think it is different like Madison being a colleague of a major university college town. I do think the food scene is a little bit different. But like, we're the we're the birthplace of Culvers like butter burger like,

Scott Benner 55:32
Are you like fried? Like reseal? Yes. Yeah. Like, like fried and greasy. And, like all that fat and everything like and I was like, God, God, like, I don't think anybody's got I actually ended up my brother's got type two diabetes. And I was like, Dude, you're doing great. I said live in here. If you're managing the way you are, and like you're doing fantastic, because this is hard to navigate. You

Jenny 55:55
don't need me. Yeah, I'm not gonna paint it. Like we're out here like living this healthy lifestyle. But I think it's there if you want it to be there. Yeah, no.

Scott Benner 56:06
I'm actually going to do the next thing on my to do list with. I don't know how I'm gonna do it with yet. But I think I want to do a series and tackle hunger. And like, really, really try to understand hunger and like satiation, that kind of stuff, especially in how it applies to people with type one. Because, you know, Amylin can be an issue. And people with type one can be hungry all the time. And just think that that's normal. And it's actually kind of not GLP, is you're kind of proving that now that helping a lot of people with type one diabetes as well. I really want to dig down into it. That said, I wonder if, like, is it about like, because you went right to the idea of like a holiday? Is it like this food just seemed like happy? Like, do you have like an association between food and good times? Or like anything like that?

Jenny 56:53
I don't know. I? Yeah, I mean, nothing like sticks out like, Yes, I feel like during the holidays, food is like, an aspect of it. But I feel like for me, yeah, like I would just food has always just been very enticing to me. Like, my husband is like, oh, yeah, I forgot to eat lunch today. And I'm just like, what, you know, and it's just, it's wild. But it is, it's been interesting to navigate as a type one, because I think it's helped me like understand food in a different way. But at the same time, I have been very adamant about like, I don't want to limit myself, like, it's like, I still want to enjoy food the way I was. So

Scott Benner 57:36
I have a different perspective. Now I'm just about a full year on a GLP medication. I don't give a crap about food. I wasn't a big food person before. But now I literally look at it like fuel. And I just look at, like, I don't know my happiness, or like my fulfillment or something like that out of something else. Because, you know, and don't get me wrong. Like, who doesn't love going to a restaurant hanging out with a bunch of people and bowls and stuff like that? Like it's all great. You know what I mean? Like, I love cooking food. I love making things for people. I rushed around to make my son breakfast this morning. And I liked it. Don't tell him that. You don't I mean, I was like, Oh, I'll scramble a couple eggs come up with this with it. Like, you know, like that kind of thing. But it's eerie how quickly my brain doesn't talk to me like that anymore. Like do you have the food voice? Do you know what that? That idea is? Like, do you wake up in the morning thinking like what am I going to have for breakfast? Not

Jenny 58:28
particularly so I don't actually really care about breakfast like I pretty much just eat the same thing every day. Okay, I think I'm more of like a savory enjoyer of food like I'm like if I never had a Sweden the rest of my life I would be fine. wouldn't bother. But I think it's just like I have always just enjoyed. I don't know food and that's very rarely but it is interesting cultural

Scott Benner 58:51
to you or is it like guttural like do you feel drawn to it like on a primordial level? Or do you just like being a good human? Are you like, I have to eat this? You know, I'm saying?

Jenny 59:01
I don't know. I don't know the impression that I'm like that girl from Willy Wonka that like gets blown up because she you or is it the boy?

Scott Benner 59:10
It's got this fluke, right? Yeah.

Jenny 59:13
I mean, I don't think it's that level. It's just it's always been intriguing for me. Whereas like other people, like, like my husband, he'll just eat the same thing for lunch every day. It'll take it to work for a month. And then finally I'll be like, Oh, maybe I want a different dressing

Scott Benner 59:29
pickle with it today. Maybe

Jenny 59:32
that is just so crazy to me. Because it's just it's not how my brain operates. Maybe you guys are on a more advanced level and I'll get there one.

Scott Benner 59:42
Now, I mean, I don't know about that. But I will eat the same thing over and over again. I don't care.

Jenny 59:46
Oh my God, even leftovers. I have to like force myself to like,

Scott Benner 59:50
interesting. No, I'm gonna I want to have all kinds of conversations about this. Like I really want to pick through how people think about it. Because I think there's a portion of it for some people. It's Type one like that, like a an unending hunger can really be because of your pancreas doesn't just make insulin it does other stuff too. And so some people with type one experience like a never ending hunger.

Jenny 1:00:14
Yeah, that's definitely not not for you. No,

Scott Benner 1:00:19
I just Yeah, I like you have like a pretty hippie vibe. You know that about yourself like you're just sort of like, you know, I love the kids but not enough to pay too much attention to them. And they're like, I'm gonna make a bunch of babies. I think three is enough. But the guy seems to one five, so whatever. Would you say? It's

Jenny 1:00:33
like a laid back?

Scott Benner 1:00:34
You're a little hippie ish. Like, you have a little laid back vibe. You Oh

Jenny 1:00:37
my gosh, you just made my day. I have never you think you're laid back? No, I think I'm very laid back for the people I'm surrounded with in my life. I'm not

Scott Benner 1:00:48
fair to the other lunatics, you know. So what you're saying?

Jenny 1:00:51
Exactly, yeah. So I'm just gonna like write it down in my diary today. Like I got, I was called laid back. And it was like You seemed

Scott Benner 1:01:00
amenable? Does that make sense?

Jenny 1:01:01
i Well, let's take it this way, though. I think I'm amenable probably because we're maybe more on the same page on things like if I encounter something Well, listen,

Scott Benner 1:01:11
if babies came out of a hole in me and I made three of them, and I didn't want any more and somebody said I might want four or five I'd look at him and go you're thinking about the wrong girl? Because I'm not doing like, but you were just like, I'm good with three but he wants four or five and you were like right on well,

Jenny 1:01:29
you shed baby color that conversation of like, it is a very much like 5050 decision like I think yeah, it's not like oh, whatever he says goes kind of thing.

Scott Benner 1:01:43
I had the vagina it would be 98 to be like, if you're willing to pay for it, I'll consider it like okay,

Jenny 1:01:50
but to be fair, it also could be a situation of like, I personally believe time will be on my side here of like, as we progress with three kids like it'll be like oh, this is a lot like and I think we'll probably be on the same page in the end. Anyway, so why you know have the bang out fights now was their opponent. I have a really bad also habit of like saying really wrong and things like It's like close to a phrase but not the actual phrase and it just comes out super

Scott Benner 1:02:21
sexual already with so pretty Wisconsin anything by the way. Here my my sis, sometimes my sister in law says stuff and I'm like, she's so close to that thing. She almost got it right. Have

Jenny 1:02:31
you heard this in our own little bubble here? And we're just like,

Scott Benner 1:02:33
possible you have your own sayings? That's fine, right? I hear that. So okay, so I'm sorry. So we're making the baby. It's going along, this doctor gets you into the fives. No problem. It stays like that through the whole pregnancy.

Jenny 1:02:46
Yeah, when it's phenomenal. And I think what was interesting to me, I guess is like, not that pregnancy, by any means is easy with diabetes, but I think there's like a natural, like, understanding that, like, my insulin needs will most likely just be increasing. And so I think I had that like understanding. So when I felt like my numbers were a little bit higher, I like was like, okay, like, things are happening, like, hormones are crazy, whatever, it's, I would just check in and be like, Okay, let's try this. And then I would if I dip super low be like, well, that's bad. But I think for me, it was a pregnancy. And with babies, like even like the period that I'm in now of like, breastfeeding, and like, dropping off from all these pregnancy hormones has been way harder to navigate for me. Because it's so there's much less like trajectory. I feel like one day it can be super high and crazy. And if the baby you know, they're eating way less than it just tanks, like it just, I think, for me, there's just there's been so much more difficulty in maintaining good numbers in the past few weeks, then the whole last nine months. Because it was just like, typically, it was I was always just gonna need more insulin. Yeah.

Scott Benner 1:03:57
Okay. Interesting. So, you pivoted quickly during the pregnancy, the doctor was there to support it, but you felt good about doing it, and you counted your carbs? Is that about it?

Jenny 1:04:10
I would say I counted carbs for breakfast, because I was like, in my head of like, okay, she asked me to do this. And then, like, throughout the day, I would be lucky if I probably got another meal in there where I was counting carbs. But for the most part, I think, yeah, I don't know. I've, I've just, I don't know if I got lucky here. But it was just more and with the Omni pad actually interesting. About after 20 weeks. She took me off auto mode, and we went into manual mode. So it was basically 100% on setting. Yeah. And that was like, I felt it was like shocked when she told me she's like, Let's go off auto mode. And I was like, no, like, why would we ever do that? And then it was like, even better in manual. Okay, so And again,

Scott Benner 1:05:00
did you go back to auto after the pregnancy ended? And are you still manual?

Jenny 1:05:05
I mistakenly was on manual and actually my, before I had the baby, we hit programmed like a post baby setting. So I knew right away like once I went back on my pump after a cup, I think I had a pretty rough like transition from the C section. I was like really nauseous and like sick. And so they were still doing my sugars because I was basically like fasting. So it was easy for them to keep it steady. And so then once I got back on my pump, I was in manual mode for like three or four days. And then when I had my follow up, that was like, let's go back at Otto and have been out there ever since

Scott Benner 1:05:40
in my confusing, laid back with laissez faire, maybe you're a little you're a little like, hey, whatever comes comes. You need to describe yourself to me like what is it? I'm missing about you? Like there's no cuz you keep calling it lazy. And I don't think you're lazy. I mean, you have three kids, you can't be lazy unless they're chained to something and you're like, you know, off in the other room.

Jenny 1:06:03
Yeah, I lost a fair maybe is a fair word, I think. Yeah. Because maybe I've had like some whether it's like the type one diagnosis midlife like, I just feel like there's so much that's out of your control. Anyways, that I've just kind of resigned to like, not like, Oh, what is what is but it's kind of like you have to learn to roll with life. So I think that's maybe wear, like worry about don't sweat the small stuff. Maybe it's a stupid cliche.

Scott Benner 1:06:36
Have you ever heard me say like, I reorder my to do list all the time, like buy whatever is most necessary? Like what my wife will make a to do list and have to do it in order. Right. But you would reorder your list if something became more important. You would knock number one down to number three and just put the new number one up there. Sure, yeah. Yeah, but you're not so you're not uptight like that?

Jenny 1:07:00
No, definitely mad. But I would say yeah, I think I'm a very I'm a big planner. But with a grain of salt of like this. If everything works out, this is gonna be the plan. But I know it's not all gonna work out.

Scott Benner 1:07:13
You're weird mix. It's interesting. I like that. By the way, some people right now we're going to do just call his wife uptight. Sure, whatever. But But yeah, but like, that's interesting, because you're a very weird mix of like, rigid, but then not.

Jenny 1:07:30
I have to say that's probably a very accurate. No,

Scott Benner 1:07:33
yeah, I've been really like for the last hour. I've been trying to figure out who you are in that regard. And Alright, I think I'm willing to stay with that. Like a smoke and mirrors things. I don't know. I just don't like you calling yourself lazy.

Jenny 1:07:47
Oh, I shouldn't say I don't feel like I'm a lazy person. I think sometimes my approach can border on lazy behavior.

Scott Benner 1:07:55
But you don't know how to explain that to me, though. Right? Like, what does that? Yeah.

Jenny 1:08:00
Well, it's like, if I just took the time to learn something, or like, you know, like, if I set aside a couple of days to really, like, hammer out the details or figure it's like, typically, I'd be eating the same meals throughout the course of a couple of weeks. And if I just actually nailed those down, I probably would have a much smoother thing, but I've never done

Scott Benner 1:08:20
so you're not a work smarter, not harder person. Probably true. Yes. Well, that really, you should do that. I mean, because if you've got three kids, at some point, you're gonna run out of time. Exactly. And it's like, I know this. It seems like a joke now. But wait till I mean, they're close in age, we all three of them are playing a sport.

Jenny 1:08:39
Right? Or well, and that falls into like prioritizing myself of like, I probably should just like, figure that out.

Scott Benner 1:08:46
Yeah. To make it to make it a smaller part of your, your needed brain power today.

Jenny 1:08:51
Yeah. All right.

Scott Benner 1:08:52
Can you do that? Oh,

Jenny 1:08:54
100%? Well, yeah. I'll get back to you.

Scott Benner 1:09:01
I got a feeling I'm gonna be busy having sex in six months. So like,

Jenny 1:09:06
I should like little things here and there, I think and honestly, it's like, I feel like every guest has it. But it's like your podcast is super helpful. Because I do think it brings things to the front of my mind that probably should be there more often that I just kind of push to the back. Yeah. So I think it's

Scott Benner 1:09:23
it's interesting. You said that because I was thinking earlier, you're that person who uses the podcast as a reminder, just like keeps keeps it something front of mind. Instead, yeah, it helps with that. I find that valuable to I don't think everyone uses it that way. But I find it valuable for myself to use it that way sometimes. You know, Oh, yeah. The conversation myself

Jenny 1:09:44
like I should just go through the pro tips again. Because it's like that, I think would help be so mean. Yeah, you're so anywhere. I can have bigger gaps in my management.

Scott Benner 1:09:55
I gotcha. All right. Well, Jenny, is there anything else because I feel good about This conversation. I feel like it's come to a natural conclusion. No, I

Jenny 1:10:03
don't think so. You're good? Yeah, sure.

Scott Benner 1:10:07
All right. If your husband really wants to come on and be anonymous tell me before I put this out, because I'll take that part out of here so people don't know about it.

Jenny 1:10:16
Okay, I'll ask him. I'm curious. I don't know. It's it's a 5050 It's

Scott Benner 1:10:21
okay. There's no pressure. Yeah, buddy Can you can come fill me up with knowledge? I'm not gonna say alright. Nevermind, let's hold on.

Jenny 1:10:34
Okay.

Scott Benner 1:10:43
A huge thanks to the contour next gen blood glucose meter for sponsoring this episode of The Juicebox Podcast. Learn more and get started today at contour next one.com/juicebox. I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast. Learn more about its implantable sensor, smart transmitter and terrific mobile application at ever since cgm.com/juicebox. Get the only implantable sensor for longterm where get ever since the diabetes variable series from the Juicebox Podcast goes over all the little things that affect your diabetes that you might not think about. Travel and exercise the hydration and even trampolines. juicebox podcast.com Go up in the menu and click on would you like to go on vacation with me you can use cruise 2025 is on sale right now go to juicebox podcast.com. Or check the link in the show notes to find out more. If you're not already subscribed or following in your favorite audio app. Please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1255 Almost Ensign

James shares his journey of being diagnosed with type 1 diabetes just 30 days before graduating from the Naval Academy. Despite this life-changing event, he pursued a career in aerospace engineering and navigated the challenges of managing diabetes for nearly 46 years.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 1255 of the Juicebox Podcast.

Jas was diagnosed with type one diabetes 46 years ago in 1978 at the age of 22. While he was in the Naval Academy, he was just 30 days shy of becoming an ensign when he was diagnosed. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. People who want to buy quality and comfortable towels, sheets and clothing should go to cozy earth.com And they should also use the offer code juice box at checkout to save 30% off of their entire order. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones. It doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. Don't forget the juice cruise 2025 is on sale right now at juicebox podcast.com. Scroll down to the banner with the big boat on it click on it. And just like that you'll be vacationing with me and all of my friends. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox us med is sponsoring this episode of The Juicebox Podcast and we've been getting our diabetes supplies from us med for yours, you can as well. Us med.com/juice box or call 888-721-1514 Use the link or the number get your free benefits check it get started today with us med this episode of The Juicebox Podcast is sponsored by the ever sent CGM and implantable six month sensor is what you get with ever since. But you get so much more exceptional and consistent accuracy over six months, and distinct on body vibe alerts when you're higher low on body vibe alerts. You don't even know what that means. Do you ever since cgm.com/juicebox Go find out. Hello, Scott.

James 2:33
And thank you for inviting me to join you. My name is James Gafford. I'm a in type one diabetic for not quite 46 years now this is today's the 29th of February, happy Leap Day, by the way. In 2024 by I was diagnosed on May 8 1978. And there's a story that surrounds that our mutual friend Stephen Woodward was the one who suggested I might be an interesting guest for you. And it has to do particularly with that story about how I came to be part of this. I don't know community is one word that comes to mind. Arcade is another one that comes to mind. It's how I got stuck here. Basketball is another one that comes to mind. You know, I mean? There's lots of ways you can frame the whole experience of being type one. But for me, how it got started was I was Midshipman at the United States Naval Academy class in 1978. And was 30 days from graduating the day I was diagnosed. Had that not happened I was headed, I would have been on June 7 1978 It was commissioned as an ensign in the United States Navy, I want to go on in relatively short order to nuclear propulsion school and become ventually. Who knows what would have happened to what the details were because the A they didn't and and be, you know, there's no predicting if there's one thing we know about this, this particular affliction, it's that in a lot of ways, there's no no predicting what's going to happen today or tomorrow, or, or a week from now, let alone a year or 10 years now. But what we do know is that it is we couldn't have had this conversation 100 years ago, because at that point in time, nobody lasted 26 years with this because it was a fatal disease. Relatively short order. And that's not the truth today. So that's part of why I'm here. And figuring that out on for myself has been an adventure. And now

Scott Benner 4:34
I bet well, how old were you in 78? Like 2021

Speaker 1 4:38
I was 22 years and 44 days and about six and a half hours old. I think not that I was counting. Not counting really, really close.

Scott Benner 4:47
So you were 22 and you were diagnosed in 78. But yeah, did you always want to be in the Navy?

Speaker 1 4:53
Well, what I wanted to be was an astronaut. I mean, I just that was hands down my thing I was gonna do and So there's a chain of reasoning that goes along with that, that starts with an astronaut's or are mostly ex military test pilots, ex military test pilots, or military pilots or military officers or are became officers some way, the most prestigious way to do that is go to a service academy. I'm thinking Air Force Academy, and I have an older brother, who was a career NCO in the Marine Corps who called me one day and said, nobody in our family is going to Air Force you're going to Navy. So that was the inspiration. And I went through the whole application process and received an appointment started in the summer of 1974, after I graduated high school, and actually haven't had to start wearing glasses, my, my sophomore year, my youngster year, which, at that point in time, the requirements were such that that would have limited me from pilot training. But at this point, I'm far enough into the whole experience of being a Navy guy, and being dedicated to it and wanting wanting to finish certainly, and go ahead and be commissioned. So I'm starting to think well, what's what are interesting or productive and, and prestigious things I can do and nuclear propulsion was a big deal at the time still is. So that seemed to be the way to go. And I was I was, was an aerospace. I was actually a double engineering major. I finished all the requirements and received a degree in aerospace engineering also finished all the requirements for systems engineering degree the damn they wouldn't they wouldn't give me two degrees. I was I'm so pissed about that.

Scott Benner 6:27
I was gonna say like, did you just want to do this or were you good at it? But those are some degrees that would tell me you'd be great at it. Yeah, I guess most people wouldn't realize but they're more naval pilots than pilots in any other branch the military right. If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, G vo Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you store Chivo Capo pen and how to use it. They need to know how to use G Bo Capo pen before an emergency situation happens. Learn more about why G Bo Capo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma visit G voc glucagon.com/risk For safety information that I don't

Speaker 1 7:52
know. And I suspect probably the Air Force has got more mainly because that's that's principally what they do with the Navy buys airplanes, but they also drive ships and submarines and, and a bunch of other stuff. So I can't give you statistics on that. But they do have a lot of pilots and and they do crazy things like like coming in land on a 300 foot long aircraft carrier deck and, you know, so so it's it's an interesting life. I know a lot of guys went slowly through I still stay in touch with who that was part of their careers. And as it happened, as I say that was all that was all in the future. That was all the path ahead of me. And on this eighth of May 1978. Suddenly, that path was no longer available. There was a barrier down in front of it. And I was going a different direction. Do they

Scott Benner 8:40
discharge you? Or do they just put you into a different room? Oh, no,

Speaker 1 8:44
yeah, they they discharged me what happened was I graduated and got my engineering degree and they received an honorable discharge for medical reasons from the service, and Naval Academy, midshipmen Air Force and Army Cadets are active duty personnel. So though this was a medical discharge from an active duty position. One of the interesting fallout from that in the long run is that it makes me eligible for medical care from the Veterans Administration. And that actually is literally where I get all of my medical care these days. Oh, wow. And there's a story about how I got into that too, because for a long time, I didn't think I was eligible for it. But it turned out I was and the VA action classes my type one diabetes as a service connected disability. So one of the, you know, little bullet points that I have on my my talking list here is for anybody who is a type one diabetic who was active duty at the time they were diagnosed to the best of mine, and I'm not I'm not an authority on this, but I am an example. And so and it's certainly a precedent, and I know that there are a great many people at the VA who received their treatment under this general You guys have what's called a service connected disability, we think in terms generally are things like people who get limbs blown off in, in a minefield, things like that. But the the general description that goes along with that, or the general category is a little bit broader. It really means any anything that happens to you medically, while you're active duty, causes you to then become no longer eligible to serve. for medical reasons, you get to discharge, you have to go through an application process, and they have to approve you, but it's a it's a kind of a one way ratchet operation where once you get approved, you're there, you're never going to lose that that particular disability rating. So interesting.

Scott Benner 10:41
I wonder why I've always wondered why you're not the first military person I've spoken to who's been diagnosed, like during service? Why would they not take quality people and just move them into a more? I don't know, like branch where you wouldn't have to pick up a gun, I get the idea that we're all supposed to be able to fight. But that's actually

Speaker 1 10:59
that's actually really an excellent question. And so part of the answer to that is timing. You got to consider the the this is 46 years ago, where that happened today. I think it's not unlikely that the US government certainly has an interest once they've spent Yeah, all the money for education for four years. What is the one of the equivalent one of the better for your educational institutions in the world, and they spent a considerable amount of money on your education on on your military training and and part of the requirement once you graduate is that you have a service, you have an obligation to serve for it vary somewhat depending on what you do. But typically, it's on the order of about minimum service obligation of about five years to pay back that investment to the government. And you know, it's a win win all the way around, as are these is supposed to be so when when a circumstance like this happens is there's a way to keep someone on active duty out of what we in the Navy would call a line officer role than they do. And at the time I graduated, I had a classmate who was graduated with type two diabetes, they conditioned him into the Supply Corps. But with type one at that time, we did not have the tools to manage it in a way. Yeah, it certainly weren't CGM. So imagine now, middle of the night, the the mid watch midnight to 4am on the bridge of 60,000 time missile cruiser out in the middle of the ocean, and the officer of the deck is a type one diabetes, and suddenly he's having a blood sugar crash. And there's other emergent circumstances that that pop up. That's just that's like a perfect that's like adding to a perfect storm. Oh, yeah.

Scott Benner 12:34
No, I mean, I take your point on that. But I don't know why you can't be an engineer in an office somewhere back in like Virginia, like making decisions about you know,

Speaker 1 12:42
that's that's a that's an that's an entirely valid point. And but the policy at the time was the policy. And his problem, I believe it's evolved since then there was a young man who graduated, just this last summer, the class of 2023, who was blind, he had a congenital problem with his, with his retinas. That wasn't was undiagnosed until right before his senior year, but they let him go ahead and finish and graduate. And then he had went through a similar from what I read about him, he went through a similar set of circumstances like the graduated, got his degree, and then got a medical discharge and the service. So in my case, I'm grateful that they allowed me to go ahead and finish in 30 days at that point, I'm, you know, I'm like one foot from the finish line. So would have been adding insult to injury, I think to say no, but

Scott Benner 13:30
what happens then to you like, I mean, 22 years old, you've got a path, you've been on it for quite some time, there are a lot of big goals and dreams, and there, none of them are gonna happen now. And so psychologically, do you fall apart? Or do you pivot? How do you handle that pressure?

Speaker 1 13:47
That's another good question. And for me, personally, I can look back and I have memories of that. Being in a hospital bed and pretty much not being able to sleep an entire night with tears coming down my eyes and then having it eventually being so exhausted that it did fall asleep for a few hours. And when I woke up having this I don't know quite how to describe this sense that okay, I didn't plan this I didn't pick this is horrible. Somehow I gotta go forward. So I started looking around and asking questions that summer after I got home. After graduation, I spent the summer traveling around the country on job interviews, and I got I think I had nine offers a lot of going out to Southern California to the Los Angeles area and went to work in the aerospace industry. I started my my first job was working on the on the space shuttle program and this was about two and a half years he said he's, you know, you have a two and a half years before the first race on law. So I was actually part of that program. As a as a civilian as you know, as a as an engineering employee in the large aerospace company that I could do and it also interestingly, working for big company like that they all have medical insurance plans for the employees on care with You're great, you know, I'm just another.on a graph someplace. So I'm not I'm not a big expense for that, as far as taking and at the times, found an endocrinologist and you had a prescription for insulin and it was, was beef, pork insulin, this was even before Yeah, or you Mulan came out. But that was the beginning of my career as an aerospace engineer. I actually refer to myself these days as a recovering aerospace engineer, I stole that line from a friend of mine.

Scott Benner 15:30
Well, I want to hear where it took you. So but first of all, beef and pork. So were you just shooting it once a day? Or twice? Yeah,

Speaker 1 15:37
I believe was once it was once a once a day injection with be Porkins. And so that, you know, I don't go back as far as some of them. People like Steven and our friend, the other one our friends do, who, you know, go back to the days of boiling glass syringes and sharpening needles. And, and, again, that was also the the Parkinson's at the time. But that's where I got started in early 80s, I believe, is when Lily first came out with cumulus right. That was their first recombinant DNA generated insulin, like you

Scott Benner 16:08
did regular and mph at one point as well. Yes, I did. Okay. And then you do that for a long time? I'd imagine I did,

Speaker 1 16:15
I did actually quit for quite a long time. And I actually wasn't part of the VA system initially, either. Because I'd been told I've asked the question, I've been told I wasn't eligible for it. But I don't remember when exactly I got started. But it was about about 20 years later, that was about two decades, as being more or less on my own. Being a support group of one, as I've called myself, I had a really good endocrinologist, actually a really good internist for a long time. You know, looking back and comparing how I managed the disease, then with how I manage it today. I mean, completely different. That's a hard comparison to make. By God was the thinking, Well, what I was thinking was was the best that I had available.

Scott Benner 16:59
Sure, no, I mean, we talked about it a lot. But it's, I mean, obviously, in this lifetime, we've seen some significant changes both in the insulin, the delivery methods and the measurements, you know, and the way you can see it, and how it's changed things is incredible, because I'm assuming you're on exchange died at one point you were probably eating at certain times. And another point in your life, certain amounts are right, they gave you the food chart and told you that one star

Speaker 1 17:25
probably was, yeah, I got all that information. But okay, the real truth of the matter is, you know, there were days where it whatever I ate, and I've, and I'd feel crazy, and I maybe I need to take more insulin, and there were days when I had had crashes. And there was, there was no, there was just no way to see what was going on. And I may have I remember getting my first finger stick meter somewhere in the in the mid 80s. And that was certainly a game changer. But by itself, it didn't change the long term aspects really, because okay, I can take a finger stick Oh, I'm, I'm really high right now, probably probably should take some more insulin, like, take bigger stick and all I'm really low right now. Probably should eat some ice cream, you know. And, but that's not a management, that's not a management scheme. That's, that's not a

Scott Benner 18:12
versions of not having a seizure and not being too high. So yeah, it's not real value for your health. And over time,

Speaker 1 18:20
I mean, I had more than one experience where I had a hypoglycemic crash bad enough to take me to an emergency room, I had that I did that five or six times,

Scott Benner 18:29
okay? Are you with somebody in your 20s dating or married or anything like that? On your own now,

Speaker 1 18:36
and again, I'd have girlfriends and seemed to have an affinity for nurses because they had a really good, they were really good at getting me up in the middle of the night, in orange juice down me things like that. But I've been married twice. Those are both long stories. The more recent one that was very amicable separation and divorce about two and a half years ago. And she and I still tend to stay in touch. We're still good friends. She's an RN, and she had a long history as an RN of working, you know, a foreigners in hospital and then she later went back and got a PhD in nursing research. So she she's a smart cookie. And one of her comments after knowing me for a while and us being together for a while, she said I had no idea what a roller coaster this this thing could be. Yeah. And this is this was from somebody who's a medical professional. Yeah.

Scott Benner 19:22
Oh, James, I, I'm in the middle of a series right now a couple of them. But I'm in the middle of one series. Now we're, we're medical professionals are coming on, and they're speaking anonymously. And they'll just you don't know who they are. And their names are being changed, though. I've heard so many different things now. But one thing that sticks in my head is that an RN with type one told me I'd be safer having a seizure in your living room than in my emergency room. Right? And I was like, wow, that's really something you know,

Speaker 1 19:50
I believe it. So, for me, personally, I mean, I didn't actually get connected up with the VA until the late 90s. And that was at the level In the VA Center in southern California in the Inland Empire, one of the things I have this is a little bit of a side note. But one of the things I've discovered this is this is purely anecdotal, purely experiential. I don't have any hard data about this. But I have a strong belief that one of the really good things about the VA is that there are a number of major VA hospitals all across the country that are closely associated with nearby major teaching hospitals. So for example, Loma Linda is Alma, Linda University Medical Center here in San Francisco, it's UCSF, down the peninsula, Palo Alto VA is most connected with Stanford, the synergy that happens there is that the attending physicians at the VA wind up coming from the faculty and staff at the medical school. So there's this win win of getting first rate medical care at the VA, because it's the best doctors who are the teachers who are probably the most knowledgeable who are doing the major supervising. And from the point of view of the medical school. This is like this immense incredible cesspool of disease and afflictions and things that need looking at and care and learning about that the medical students can go there and just pretty much learn as much as they need to Yeah, first experience I had in Loma Linda was this endocrinologist coming into the room and I immediately liked this guy, because he had on a Hawaiian shirt. Now. So the feeling the sense was, here's a guy who understands he's not standing on ceremony he wants, he wants to feel comfortable. And he certainly wants me to feel comfortable that it didn't mean that stages was in the immediate vibe. And behind him like like a row ducklings falling and mother were all these med students in their little white lab coats, and they were there to see and observe. And so that's where I really got this, this, this, this idea, this sense that, that there was this major, mutually beneficial thing going on at the VA, I got nothing but good things to say about the VA, by the way, they they do an incredible job. They're huge. They're a giant bureaucracy there. They were actually one of the pioneers, what's now called medical informatics, computerized medical record keeping, they were one of the first major systems to develop something like that. And they still still use a version that goes back to their the origins of that so so after I'd gotten involved with the VA, and after I moved to the San Francisco Bay Area from Southern California in 2012, I moved my medical care from the Loma Linda center to the San Francisco center. And in 2006, I'm driving north on the 101 here in Marin County, having a really bad hypoglycemic attack, you know, just what again, one of those perfect storm kind of things. I managed to bounce my car off the K Rail at the on the high speed lane, swerved across four lanes of traffic onto an off ramp, not into the grass on the side of the of the off ramp, I managed to get the engine turned off. And then I passed out and sat there. When I finally came to I find him like, groggy. We've all had that experience coming to looking around trying to figure out where I am, I'm gradually realizing what's going on. It's after dark, I get out of the car, I walked 100 yards back up the off ramp just because I don't I'm not sure where I am. But I had to walk that far to look up at the sign right now. I know it's all off. I call 911 A very nice, very nice, very warm, very, very concerned lady female CHP officer shows up and might decide to my car driver side of my car is all dented and Dang. And was enough in this day and age where that totaled the car. The good news was I wasn't physically injured other than the the the, you know, the immediate short term effects of the of the blood sugar crash. Car had to go to the car graveyard. And the CHP officer looks at me, she says, Now, if you want I can write you a police report. And what she was she couldn't say this explicitly, I'm sure but what she was telling me was, you don't want me to write a police report because if you do, then then you wind up having to go get your face reviewed at the DMV and blah, blah, blah. But since there was no physical injuries, and since there's only one vehicle involved, if they're if they've been more than one vehicle or they've been injured a physical injury, she would have been required to write. But she gave me that choice. And I very, I said thank you very much. I don't think that'll be necessary. We got a tow truck there got the car take care of but this started a point in my thinking, where this is where this brace came into my head about being a support group of one and I'm thinking to myself, I need to find some some help and some support for this because that at that point that was three decades almost of that was 2006. So that was that was a 30 Sorry. It's damn near 30 years. Yeah, yeah, that's that's 20 years in Yeah. So I started looking around. I'm thinking well here. Goodness gracious. I live in Marin County, California. There's a support group here for toenail fungus. You know, I mean, there are there probably is that's it. Got it? Yeah, and get and come to find out there really wasn't really wasn't any type one. There was one at Marine General Hospital that I found out about No, no, he had to be in their system in order not to have to pay a copay not to have to pay a fee to come and attend the meeting. So and it was 35 bucks. I remember this because I got there on a third Wednesday or Thursday evening, whatever it was, walked into this meeting room, which is empty, I sit down. And about 10 minutes after it's posted, this woman comes rushing, and she's a little frantic. And she's, well, the the nurse who was supposed to facilitate this, something had happened. And and so this woman was an LCSW, who had been tasked to go go facilitate the type one diabetes route meeting. And she but turned out she didn't know anything at all about type one. So I wound up sitting there for about half hour, 45 minutes, given her the long elevator speech, given her the initial education about what type one was what it's all about is it's autoimmune disease requires insulin, all this stuff, just like really, wow, that's interesting and asking questions and back and forth. And all the back time, the back of my mind, I'm the only one in the room with her, I kept thinking, I had a check in my pocket for this fee. And we got done talking. So I just kind of took the checkout sit on the table and push it across to order. And she looked at the check. And she looked at me and she had this look at kind of a deer in the headlights look in her eyes like was like, Oh my God, I don't want to take your check, but I don't have any choice. And

Scott Benner 26:24
I thought you were gonna say you married her and ruined her life.

Speaker 1 26:30
She was She didn't fall into that category. There are others, too. But in any event, so that was my my experience initially. And I did eventually find a couple of ways to get connected with community. Certainly here in the Bay Area, the biggest ones are organizations like JDRF and d y f that have both in person and online. Zoom has been this a major you know, it's a it's a cultural paradigm now that if one of the very relatively few good things that came out of out of all the COVID I don't want to say hysteria nonsense. But that's a big part of what's in the back of my head is that this is now a thing, culturally so you and I, for example, now can sit down have this conversation me in my living room you in your in your podcast studio. And it doesn't matter where we are in the world. Right now. It's

Scott Benner 27:22
amazing, I would tell you that what you were looking for back then and eventually found. It exists online. Now to the degree that I don't know if it'll I don't think it would ever kill like in person meetups, but it really does fill a gap for people who are not going to get their car and go meet some people. You know what I mean? And it's a big deal. Because you can also be faceless. Like, that's one of the most valuable things that I've seen is the I have a Facebook group. I think at this point, it has like 47,000 members in it. And it gains 150 new members every actually it's less than every four days. 150 new people, but the people who talk the people who have it in them to be, you know, extroverted, or to even ask a question, even when they're really in trouble they can they need to ask question, it's a small portion of people that are able to do that. But the value for the rest of them that are lurking and watching and reading, they would never ask that question on their own, and yet they get the answer. And that's really wonderful. And they still feel supported, even though the other people there don't know they exist. I didn't know that would happen. I mean, James, you don't know me. But I started the podcast podcast was popular. Somebody at some point said we need a private Facebook group to talk about the podcast. And I did not want that. Like I didn't want any part of being on Facebook and running a group. It all sounded horrible to me. But that group's only gosh, is it maybe four years old? And it's almost got 50,000 People at it? Yeah, remember? Yeah, it just it's crazy. Like it was not a thing I set out to do like the podcast the way the podcast is going. This I did on purpose that like I just happen, you know, so it's great. And I didn't and by the way, James, I didn't know it because of all the weird things and you know, it doesn't get said a lot but of all the weird things. I don't know if diabetes. I don't actually know the personal internal drive of somebody who might need community for that. So it was a blind spot for me. today's podcast is sponsored by the ever since CGM. Boasting a six month sensor. The ever sent CGM offers you these key advantages distinct on body vibe alerts when higher low, a consistent and exceptional accuracy over a six month period. And you only need two sensors per year. No longer will you have to carry your CGM supplies with you. You won't have to be concerned about your adhesive not lasting, accidentally knocking off a sensor or wasting a sensor when you have to replace your transmitter. That's right. There's no more weekly Your bi weekly hassles of sensor changes. Not the ever since CGM. It's implantable and it's accurate ever since cgm.com/juicebox. The ever since CGM is the first and only long term CGM ever since sits comfortably right under the skin and your upper arm and it lasts way longer than any other CGM sensor. Never again will you have to worry about your sensor falling off before the end of its life. So if you want an incredibly accurate CGM that can't get knocked off and won't fall off. You're looking for the ever since CGM. Ever since cgm.com/juicebox. I used to hate ordering my daughter's diabetes supplies, and never had a good experience. And it was frustrating. But it hasn't been that way for a while, actually for about three years now. Because that's how long we've been using us med us med.com/juice box or call 888721151 for us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor index com customer satisfaction surveys. They have served over 1 million people with diabetes since 1996. And they always provide 90 days worth of supplies and fast and free shipping. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and Dexcom G seven. They accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice box or just call them at 888-721-1514 get started right now. And you'll be getting your supplies the same way we do kind

Speaker 1 32:05
of pick up all kinds of jump off America to go on that. Once I got into this mode of thinking that I've been I've been this the support group of one now for 30 odd years. Time for me not to be a be part of a larger support system. And so one of the things I wound up doing was going back through my resources at the VA. And it turns out again, you know, the VA has gotten mixed messages broadcast and video over the over the years and you give me here and you know, anybody who has any knowledge or subject or opinions about it probably has heard horror stories on the news about somebody having to wait six months to get a, you know, a cardiac appointment, and they die in the emails and stuff like that doesn't happen. Yeah, it does. But I gotta say, my experience, again, has been remarkable has been I got nothing bad thing, I got no bad things at all to say about the VA. And a lot of very good things to say they do an incredible job in a very, very challenging and I'm not just talking about type one, or even diet, type two diabetes, in general, everything about everything that they manage, which is pretty much the entire spectrum of of medical issues that that any medical system in the world, anywhere in the world has to handle in this day and age. And that includes mental health services. So one of the things I wound up doing was getting involved with a program at the San Francisco VA, that makes use of a psychological modality called Cognitive Behavioral Therapy or CBT. And that for me personally, both generally in my life, but But in particular, with regards to managing the diabetes has been a huge, huge benefit. And it's just it's basically a technique that it's a learned technique of dealing with feelings, emotions, and thoughts that are troubling, in a way where you make deliberate conscious choices about how you're going to how you're going to react to I can't stop a thought or a feeling from coming into the back of my head. But I can make a conscious choice about how I'm going to react to that. And over time it becomes a learn to practice thing and it gets into the equivalent of muscle memory or I don't even have to sit go through the chart down and sit and write down okay, what was the bad thought? What's what's a veteran thought or a true thought that might replace what's false about that what's true what's really true? How can I know that that there's this learned process you go through but but it's something I do day in day out moment by moment almost sometimes and particularly as much as anything in with regard to type one that involves having a way of being able to do something that probably in hindsight was not real smart thing to do like eat a whole carton of ice cream just because I want to and then later being able to say you know what, that was really dumb but yes, I know better and, but also more I can do I can do better. To our eyes, can I do do better because I make a conscious choice about this. So this has been a mechanism that, for me has been extraordinarily valuable.

Scott Benner 35:06
And you only know about it because of the VA involvement. Exactly. Yeah, that's correct. Right. So they took a thing that they were developing for people for combat reasons, probably, they developed this thing for reasons probably people with PTSD and stuff like that, right. And then VA, strictly

Speaker 1 35:20
speaking, the VA didn't develop it. It's been a technique. It's been around for a long time. But but there were practices. One practitioner in particular at the VA, who adopted a nurse practitioner there who started a program that has become very successful and it's, it's not directly involved with but it's connected to its affiliated or medically, it's in conjunction also with the mental health issues that VA these is probably best known for trying to handle our is PTSD. So a lot of the guys in my, in my CBT group, were also part of PTSD support groups, they're at VA. So this is, again, the these are this is these are areas where the VA is making huge strides in in providing opportunities for and realizing very positive outcomes in the long run. And they do deal a lot with diabetes all I have a suspicion. Again, I don't have any hard data for this, but the population in general in the world today something what is it one? And I forget how many people are diabetic? What

Scott Benner 36:24
when you count type ones and type twos together? It looks like something

Speaker 1 36:28
like one in 20. Right? Yeah. And and oh, the people who are diabetic, one in 20 of those are type ones, the 19 out of 20 are, these are very rough, round numbers. But it's like 5% of diabetics are type 190 5% of diabetics, type two.

Scott Benner 36:44
Well, a number of years ago, there was a big push to get people to realize when they were pre diabetic, and I've kind of haven't heard as much about it at this point. I think it did its job that everybody knows, hey, my one C six, it shouldn't be you know what I mean? Like that kind of thing. But they were I mean, I forget the numbers there. But the staggering. There were staggering numbers about people who they thought had pre diabetes just based on the data that they could see. Yeah,

Speaker 1 37:08
yeah. So point being that at the VA, they clearly deal with a lot of adult diabetes, type two diabetes. Yeah, I don't think they have as large a percentage of diabetics that are type one at the VA for the simple reason that you don't get VA care unless you're previously active duty or lesser previously in the military. And if you're type one diabetic to begin with, you're not going to get into the military. That's a that's a medical exclusion. If you become type one, while you're in the military, then you're going to get discharged. Or at least in my case, the what you were talking about earlier about maybe shutting you off into a job that's,

Scott Benner 37:45
like combat related. Exactly.

Speaker 1 37:46
Yeah, something like that. There may be more considerations like these days, but still, I gotta believe that that probably skews the that percentage within the population that are treated medically at the VA, for service connected disability, so much smaller percentage of diabetics, there are type one that are the type of diabetics in the in the, in the population of the world as a whole. So in that sense, that's another reason why I'm very grateful to the VA because, in a lot of ways, I'm, I'm this outlier, I'm like this, this came out of left field. Yeah, I have type one diabetes, but look where I was when it happened. And look, what, what, how, what path I followed afterwards. That's where I wound up where I am today, the in 2007, my CDE at the VA, who are who? She's a nurse, she also happens to be a type one diabetic. And oddly, since she's not a veteran, she doesn't get care. At the VA. She gets it through Kaiser or something. But she comes running down the hallway with a magazine me Have you seen this? Have you seen this? And it was a magazine? ad for the Dexcom? System? Seven? I'm not sure I was the first I believe I was the first but if I wasn't, I was one of the very first patients ever at the VA to use the Dexcom system seven in 2007. And that was a game changer. Oh

Scott Benner 39:06
yeah. So that'll confuse people who are in or newer diagnosed. Right now the Dexcom G seven is the latest version, right? When they came out, they called it the it was the Dexcom seven and they call it the seven plus, and then all of a sudden, they call

Speaker 1 39:22
the system seven, right? And then they went to G four eventually, it had a different form factor than I mean, eventually they move to the G four and then the G five, which are the ones that are are the same form factors as the G six G G seven is the new one. That's that's the single insertion, right? Integrated transmitter sensor. Yeah. So I got I got started fairly early with the water now become the conventional CGM sensors at the VA. That's

Scott Benner 39:53
something that's great. Yeah, I mean, you've had a great experience and they you know, it's like anything else online. You're gonna hear bad things about big systems because some people are gonna have bad, you know, interactions and then that's going to be their report. Also, I think people who have bad times are generally more vociferous than people who you know, have good. The

Speaker 1 40:11
analogy I use is that anytime an airliner crashes and 500 people are killed all that's headline news, and it's on the news for six days, you have never ever in your life heard a news broadcast and said, Good evening, ladies, gentlemen, they 35,462 commercial airline flights took off and landed safely with no one being injured in any way, shape or form.

Scott Benner 40:31
It's not exactly how you will never hear that that

Unknown Speaker 40:34
headline, it bleeds it leads right now.

Scott Benner 40:36
It's just how it goes, right? I mean, I've heard what you said, like, I've heard enough news stories about somebody involved with the VA that got screwed over or something like that, or they died or had an event that again, it's news. So that's why you hear about it. Yeah,

Speaker 1 40:48
exactly. And I don't believe it's typical. And I mean, again, my experience is anecdotal. I also see and talk to other people, or their experiences, we get really first rate medical texts on.

Scott Benner 41:03
I mean, honestly, it's not just excellent. But how long? Were you in the Naval Academy for as a life partner? Yeah, for three or four years of effort you getting paid back for the next 40 years? That's not bad. For sure.

Speaker 1 41:14
There was a time when I thought in terms of who do how do I feel about the US taxpayers paying for my medical care? And then I realized, wait a minute, I'm a taxpayer too, so I'm just gonna count on my on my accounting sheet. Everything goes to federal taxes. That's my medical

Scott Benner 41:29
back to your to your diabetes. So at what point do you find CGM pretty quickly? What's your experience having so many decades without it and then having one of the first CGM is is it an eye opening moment for you? Does it drastically change how you care for yourself? What happened in there?

Speaker 1 41:47
It's eye opening, but it's eye opening in a gradual way. Yeah, it's there's this if you're a tech, if you're a tech, geeky type of person at all, which I certainly am. And anytime you get a new toy, you're like, Ooh, this is so cool. And so that first year that I had that system seven, I think my agency dropped from over seven to the first one I had after that was like, 5.80.

Scott Benner 42:11
Wow, why, what, what changed?

Speaker 1 42:14
What changed was, I could see these numbers, I could see this graph, and see that if I did this, wow, it does that. And so if I don't do this, or do something a little different, it doesn't do that it does this. And and that was fascinating, A and B, I defy you to ever find a type one diabetic, who's had a serious hypoglycemic episode and says they enjoyed it.

Scott Benner 42:38
Avoiding them is also a big part of it in technology, that's for sure. It's sleep, too, right, like sounder sleep?

Unknown Speaker 42:43
Well,

Scott Benner 42:45
we're never going away. Yeah,

Speaker 1 42:47
it's, again, things are gradual. But it definitely was an eye opener. And it was the beginning of, of a newer part of my path and my journey to where I am today, which is I'm currently use for the very first time my wife ever started using a pump, in 2018, was when the Medtronic 670 G, AI D system came on the market that was really the first hybrid closed loop system to make the market. And we I've been talking with my endo and my CD at the VA. Does it make sense to go to a pump? Well, we got this new thing coming. So let's kind of wait until that that whole new book, hybrid post loops, and then think about making the jump. And we did and again, that was a major improvement in in my overall error. Now, the the flip side of that coin is that the both that first one of yours, you're talking about being MDI and clueless, basically, you know, gradually, slowly over time, I lose weight, I lose, being in physical shape gradually, to a degree. These things are things I'm not happy about, necessarily, but they're also things that partly because of what I was talking about earlier with the CBT, I'm able to look at and say, Okay, I maybe I could very arguably have done better. Yes. Is that is that a a true statement? It absolutely is. But so if I didn't do better, should I feel guilty about that? And the answer that is an absolute NO. And I'm able to get there, mainly because I know that however well or poorly I've done I've done by and large, the best I can. And I am already six years almost into this. I'm going to be in Boston in 2028 to get my 50 year gold medal. I

Scott Benner 44:33
want to ask you, do you have any symptoms of long term complications? Not

Speaker 1 44:38
really. The main things I have, at this point at this stage in my in my progress, have gradually developed insulin resistance over time. So my TDD these days is between 80 and 100 units a day, way more insulin than I've seen why to be trained.

Scott Benner 44:54
Let me tell you something, man, I go back to that VA and tell them you want Is that bound or we go vie for weight loss and weight? And do you see how your insulin needs go down? Yeah,

Speaker 1 45:06
well, we're already having that discussion. Good, good. But there's so many GLP one antagonists out there that tell me again, the ones the names in the wild

Scott Benner 45:14
If so, you're only going to qualify for weight, because you're type one, so they won't give you Manjaro. No, but the Manjaro knows for type two right now, it's classified for weight loss as zip bound. And you get a GLP, one with a GI p at the same time,

Speaker 1 45:31
right? You're right. Yeah, yeah. I'm not up to speed on the whole subject, I get lost in the, in the trade names for all the all the drugs, I

Scott Benner 45:40
am two weeks shy of a year on a GLP. I'm 47 pounds lighter today than I was last year. And my daughter who's 20, is taking just a small dose of ozempic right now, once a week, and her insulin needs went down drastically. I had an episode on last week with a mother of a 15 year old who had type one for three years. And her daily insulin needs went from like 70 down to seven.

Speaker 1 46:06
Well, what am I perennial, and this is also that's not just me, the community in general, one of our perennial complaints has been the lag time between the realization of the efficacy or the potential efficacy and then and, and the value of pursuing investigation into the efficacy of different treatment modalities, and how slow it takes. So the all you have in the entire amount has to do with what's called labeling and the FDA approvals, all of which that's kind of one subject. So it's very clear that type one diabetics over a long period of time they develop insulin resistance, which is the principal characteristic type two diabetes. So why wouldn't it make sense to

Scott Benner 46:46
you every year or to from that being reclassified? I think because of the insurance hammering but I'm, I'm gonna tell you something, I don't usually, I guess it's not true. But I don't usually take credit for a lot of things that I do. I am out in front on the GL piece, like I am going to talk about it moving forward. I've taken some crap from some bro science people online who think like, you know, it makes you muscle waist or your bone density goes down, or whatever they thought the first day it came out and one of the big podcasters yelled about it one day or something. If you haven't used it, you don't know what you're talking about. First of all, I can't tell you how many people with type one diabetes are just saying things like 20% reduction in my insulin needs, or I dropped 30 pounds or how about like that voracious hunger that a type one can feel because of the lack of, you know, Amylin, and stuff like that. And now that's gone, and all the value it's bringing, and how about a lot of all that

Speaker 1 47:39
all that is part of where I am right at this moment? Yeah, of course. And so that's part of my next My next step is is pursuing the GOP once you've

Scott Benner 47:46
no idea, James, in just a couple of weeks on it, how much different you'll feel. It's fascinating. I had to adjust my daughter's insulin a week into the first injection. I was

Speaker 1 47:59
always the only thing I'm a little worried about right now is wait a minute, I gotta go back to a whole nother cycle of figuring out insulin doses and carb ratios and Basal setups. So but I've got the tools to do that with too. So

Scott Benner 48:16
yeah, you do. We'll say you you tried 670 G back then. But what are you using right now?

Speaker 1 48:20
Well, I switched from the six, seven D to the 780, late last summer and that was subsequent to being involved in a clinical trial over at Diablo clinical research, right? That use the 780 G but the trial had to do with a new sensor system that Medtronic is coming out with the time they call the DS four sensor it says it's it's Medtronic the answer to the Dexcom G seven and it has just now come out and it's actually available in Europe now. And they call it this in Clara. Okay, so that's it's a single insertion and it for me it works awesome. And, and I had enough time to while I was on the study to get the VA to pony up and send me a six, seven AVG and started some supplies a little bit while or a month or two while I was on the on the study. You know, because type one of the things we have to do we absolutely have to do is you want extra of every sensors, decision sets, insulin you want everything in, in in supply and more than you need. Until you get your next set of refills.

Scott Benner 49:26
It'll definitely be in America soon enough.

Speaker 1 49:28
Yeah, I will. And the results I got were I went from being on the 670 Somewhere in the mid 70. Call it 75% Time and range. Yeah been in the mid to high 80s And that's where I am right now on the with my own 780. But using the slightly older sensor, The Guardian, The

Scott Benner 49:49
Seven ATG. I hear a lot of good things about it actually from people who use it. I

Speaker 1 49:53
also was involved in 2020 20 with a study with Dr. Buckingham. At Stanford testing vetronics, seven day infusion set, I got really good results with that. What I'm using right now is the Medtronic 780 G, The Guardian Force Sensor and the extended were infusion set, which I helped. I was part of the asset. Yeah. Part of part of the cohort, the group that prove that that works. Yeah,

Scott Benner 50:21
I'm looking here at mini med seven. ATG. This is a Europe system with a simpler a sync sensor will be available in Europe via limited release in spring 2024. Yeah, you got a little ways to get it over to America, then probably,

Speaker 1 50:35
you know what it'll take as long as it takes. But when it gets here, it'll be another major game changer. It's yeah, where I am right now is I can change my entire infusion set in my, in my sensors system in about 10 or 15 minutes at most. Yeah, that's not counting having to recharge the transmitter, which will not be the case with a simpler sensor once it's

Scott Benner 50:56
been disposable, like the libre or the Dexcom. I would say James, I'm sorry. Medtronic is the sponsor of the podcast, as is Dexcom. And so I should just say that, ya know, I think this is terrific. It's it took them a little while, but they're, they're coming back pretty strong. Yeah, it's

Speaker 1 51:12
pretty clear that what Medtronic is having with the supplier is not just the newest sensor for there, they've always kind of been in this we're using our own sensor we're not integrating with with Dexcom. But it's pretty clear that what they're doing with some player is going head to head with the Dexcom G seven. Oh, for sure. In both the pump integrated, and then the standalone markets,

Scott Benner 51:34
yeah, they're just trying to drive people to their pump to they're not going to they're never going to you know, be a situation where you can hook up a 780 G to A libre, you know, for example,

Speaker 1 51:46
which actually begs kind of begs the question of this. Another popular topic in the community is interoperability between devices and the whole reason for the existence of things like title, which I'm a huge fan of, and I've met and, and listened to Howard luck talk on a couple of occasions and had a chance, actually a diabetes camp last summer up in Bearskin meadow to chat with him a little bit very cool guy. He's been on the show. Yeah, yeah. The whole idea that these devices should all exist in their maybe their separate little niches and it should be possible. This is this is my rant. It should be possible to go out and buy whatever palm, whatever sensor, whatever system you want, that works for you. And what works for you includes things like how well does the adhesive protect your skin, you know, so if the if Medtronic sensor makes you get alternative red, but Dexcom doesn't, you got to be able to use the Dexcom sensor with Medtronic pump frame.

Scott Benner 52:44
Well discuss Yeah, Medtronic, like they've got a pretty big market share. So I think they think, I mean, if I'm in their head, I think I can make people use our pump. As long as we come along and get a CGM, by the way they they get screwed. Here's one thing and I listen, I've made fun of Medtronic over the years for that, you know, for the Harpoon, you know, and everything, but they were first. You did it like so. Thank you. You don't I mean, they're gonna first Yeah, the

Speaker 1 53:09
670 was for all the stuff you can criticize about it. It was a game changer.

Scott Benner 53:15
Yeah. Right. And, you know, first one is gonna get picked by the shark. So like, Yeah, I mean, Fair's fair. But it also took them. I mean, in my opinion, it took a little long to get to this simpler thing. Like, it's, you know, I don't know what happened. You

Speaker 1 53:29
know, I, none of us have direct insight into the vagaries of of getting FDA approvals and what you have to do, moment by moment, by DPL, to get get approvals. And Elijah's and I think that as a society, we're, we're way too deep into that. That's just my personal opinion too deep into I'm sorry, into, the things are over regulated. Yeah. Oh, and general, but specifically, when it comes to, you know, if there's something that's available, that's going to be helpful, that's going to make my life better, I'd be able to make an informed purchase decision, you know, sure. Talk with a doctor or with somebody with a practitioner, a professional practitioner who is knowledgeable on the subject, and it can give good advice.

Scott Benner 54:16
Well, go ahead and find one of them. James,

Speaker 1 54:19
why don't you have a couple you actually have a couple? at the VA, there's plenty out there. The problem is finding a man also, this is another popular topic of conversation, but I you know, I'm, I'm, I'm depressed because I can't my doctor doesn't appear to be listening to me. Fire the

Scott Benner 54:38
doctor. Yeah. Now I know it's hard to get people to move on to different practitioner. Also, some people live in places where there's just no options. Like some people are stuck with what they're stuck with. But I take your point. Yeah. And

Speaker 1 54:50
again, the there's no good excuse in this day and age why they're stuck in it not because of their choice or because of anything that's negative about them that stuck in there. that choice, because there's only one little hospital or clinic nearby. But we live in a world where, like we've talked earlier, this connectivity exists in a way, and functions in a way where it's now possible to know. And if you don't realize that if you're not aware of that, then then you have no pathway out of that this sense of depression of I don't have any other choices. But wait a minute, maybe I do. Okay, well, maybe maybe I need to think about going out and making some searches on here and talking to people and getting into the group on on Facebook and asking questions and finding, finding a way and Oh, who's the other side of the country? But who's on my insurance plan? And who I can talk to remotely?

Scott Benner 55:42
Yeah, but it's a lot. It's a work. I think some people are overwhelmed, too. And then I wouldn't be surprised you get trapped in that cycle of like, this isn't going well, I've got no hope. I don't know what to do. They don't know what to tell me. My health is slipping backwards, what am I gonna go find a guy across? It's hard, you know. So I've done I mean, I put up a list of endos that people like have good success with, I try to keep an active list on my website of that. But still, even that is like, I can't be out there every day reminding somebody, Hey, there's a list here. Like it's just to never ending battle to keep the information in front of people to keep them motivated to try to do those things that are difficult, especially when they're getting up in the morning and going to work and raising kids. And it's a tough, tough slog. You know, it really is, what else is on that list of years over there.

Speaker 1 56:29
I got to thank you. For one thing. I think I mentioned I started listening to you a while back to some of your pro series. And there was one discussion in there about Pre-Bolus Saying that, when I listened to that, I mean, I heard the term and and yeah, it kind of makes sense. And it's one thing to hear something intellectually, and think about it and realize that makes it but it's another thing to kind of really get it kind of ingrained in you. And I started doing that. And that has made a huge improvement. And not not in not overshooting you know by Bolus, right when I'm meeting 80 grams of carbohydrates that I'm gonna, I'm gonna be up over 200 Yeah, if I Bolus 20 minutes before I go up some but not a lot. Yeah. And that's been here. So thank you for that. Well,

Scott Benner 57:13
first of all, it's my pleasure. But secondly, you're 46 years with diabetes. And I'm the first time somebody said Pre-Bolus to you? No,

Speaker 1 57:19
no, I it's not that I've never heard the term. It's that it's one thing to hear a concept. And it's another thing to internalize it.

Scott Benner 57:26
So you think that listening to the podcast made you go alright, I'll try it. Yeah, yeah. Okay. I think so.

Speaker 1 57:33
And that was you and I can't remember the woman you were just got through it to the doctor who you.

Scott Benner 57:36
She's a CD. She's also got type one. Yeah, right. Right. Right.

Speaker 1 57:40
So another thing I'm kind of on my list here has to do with the general subject. And I've mentioned a couple of my own participation in this but get involved with this is something I would recommend to anybody who's type one, who is in the process of, of developing and pressing in the direction of more confidence about their ability to manage the disease. First of all, I heard a lecture by a woman named Jessica Bernstein in 2007, or 2008. She's a psychologist over nice Bay, had been type one since she was two or three years old. And she made a point about the word control. And how that steeped in that word is this, this inference, this idea of guilt burden. If I'm not in good control, it's because I'm doing something wrong. And so I'm therefore guilty. You said, let's throw out the word control. Let's let's, because there are times there is we all know, there are times then circumstances where things go haywire. And it's not because of anything I did. That's, that's bad or wrong. It's just that that's, that's the nature of the of the disease, let's substitute the word management. So in my own management of, of this disease, you get to a point where you get a little bit more confident about it. And for me, that took 40 years, to get to that point, really, really, frankly, there's always more to learn. There's always more to know, there's always new epiphanies to come to and in a way that's kind of as as an engineer and as a as kind of a geeky guy that, to me is fascinating. And fun. I'm my own guinea pig. And I get to see the sometimes some days things work. Well, sometimes they don't. But on the days where things work, well I get to say to myself, damn, I'm really getting better at this seems to

Scott Benner 59:28
ever wonder if you were diagnosed with this technology, how quickly you would have, like, come to that, because I'm, I mean, that's a long time.

Speaker 1 59:38
I don't know the answer to that. No, I know. I'd like to believe that it would be been a lot quicker because of the presence of technology. But I'm not a humble person. I don't try to be but at the same time, I try to be as realistic as I can. Some days it works. Some days it doesn't. About reflecting on my own Well, you know, my own limitations as a human, my own and my abilities. And so the short answer to your question is I'd like to believe yes. That had had I've been diagnosed, and this whole timeframe for me move forward 30 or 40 years. And yeah, I would write today I'd be where I am, but in a lot shorter, quit anatomical order. Okay, great. But at this point, in a way, that doesn't matter, because I am where I am right now. And I'm not planning on going anywhere. I'm not planning on, you know, there's going to be there's going to be a point in time in the not terribly distant future, where there are people alive who are type one diabetics who have been that for over a century, as part of that is because lifespans in general are increasing. And part of that is because the ability to survive and manage type one, diabetes for long periods of time has been increasing and improving. And we keep hearing, you know, there's a standard trope in the community about heroes five years away, and this year has been five years away for

Scott Benner 1:00:59
780 90 years.

Speaker 1 1:01:04
Today, the cure is five years, however long somebody's been telling us now, it's not unreasonable to expect that 30 years from now the cure is still going to be five years away. Okay. Great. Just take that as a as a given, which means that like I say, there are going to be people that are going to pass the century mark, you know, Johnson is going to have to think about what's gold metals and in Platinum metals now they're going to come up with some people are really in metals or something. Yeah.

Scott Benner 1:01:28
Well, have you ever seen somebody with a 75 year metal?

Speaker 1 1:01:31
I haven't, but I've known a couple of people. I know at least one person Jack Rosewall is there's a jack Okay, he's a friend of Stephen dinars. Okay. To amazing and he's, he's obviously I don't know if he has a 75 year medal or not, but I know he's overseeing

Scott Benner 1:01:45
I don't know if they if Lily makes the metal or is it still Lily or did somebody else pick it up?

Speaker 1 1:01:49
Well, Jocelyn Lilina has a metal program in Joslin diabetes Center in Boston has a metal program. I think Jocelyn has a 75 year medal. Okay, I'm planning to get my 50 year metal gold medal there. Again, 20. Good

Scott Benner 1:02:01
for you. When you guys do you talk about people, you know, like how actively Are you friends? Are you text friends? Are you at a meeting once a month, or just people I've met

Speaker 1 1:02:11
we're friends through connections in through diabetes community connection, so it's online, every month, here in the Bay Area. JDRF and dy have both have an online meeting. And dy F also has a couple of has an in person meeting our friend Jack down in the peninsula has both an in person meeting and a an A in a Zoom meeting that he does once a month. So there's a lot of there are a lot of opportunities here in the Bay Area. And by extension, now we get people in, in the Zoom meetings who are from everywhere country, right? Again, that's that connectivity, technology thing that exists today. So it's primarily in that context. I've actually met Steven in person for the first time last summer up at diabetes camp, it's another. So there are a lot of different venues, both online and in person where the community can come together. But those are principally where I know, my diabetes friends, I don't in general know them outside those those spaces.

Scott Benner 1:03:10
Yeah, it's still hard, isn't it? Even with people wearing technology that you can see, it's still not a thing that people run around broadcasting constantly.

Speaker 1 1:03:19
Another one of the vent, or another one of the arenas if you will, but I'm currently immersed in is this being single and looking for the find somebody to date? So kind of for my ideal would be somebody who's type one who over attracted to and who condensed west coast swing

Scott Benner 1:03:39
and gets your engineering might get? Yeah,

Speaker 1 1:03:42
that's the key thing. That's really that's what's so attractive about this whole idea of the community, the very first time I ever walked into a room and sat down where there was a support group meeting. And all I had to say was I'm James, I'm a type one diabetic. Everybody goes, Oh, yeah. And, you know, there's a lot of parallels. There's a lot of I found a lot of interesting parallels between that kind of a setting and what are typically known as 12 Step programs, because there's a way in which it's not the same reason for being there. It's that seems kinda reason for being there. But there's a way in which the dynamic works, which is similar, which is I get to sit here and talk about things, but I wouldn't just necessarily talk in general. But But I but I feel comfortable and safe doing so because everybody's sitting around me here has gone. Oh, yeah. Non Yeah. Oh, yeah. I get that. Oh, yeah. They get it without me even having to explain.

Scott Benner 1:04:32
Right. And even if your experience isn't theirs, they can still make the connection to exactly yeah, to say I see where he's coming from even though I haven't had this experience. Yeah, yeah. No, it's it's valuable. Like I told you earlier. It's valuable in a way that I didn't understand at the beginning. I do very much understand it now.

Speaker 1 1:04:49
Well, and I've I've said before that if I ever met someone just offhand, who had just been diagnosed with type one diabetes, that very, there are two things I'd tell him and I'd insist that they I look me in the eye and and hear and understand. The first one is, this is a century ago, this was the Jetsons today, it is not. It can be managed. That's number one. Number two, you're not alone.

Scott Benner 1:05:13
That's important to know.

Speaker 1 1:05:15
There is a community as both of those. Those are the two single most important things for any newly diagnosed type one diabetic to know and understand.

Scott Benner 1:05:22
No, I agree with you very much, James, I appreciate you coming on and doing this with me. Thank you. This was a pleasure has been mine. We're very You're very kind. It's, it's interesting to hear, by the way, I, I have two possible titles written down for your episode. Almost Ensign. And then I don't know if you're gonna get this even but toe fungus support.

Unknown Speaker 1:05:48
I think the almost Ensign probably is yeah, that's

Scott Benner 1:05:50
where I'm gonna lean. But you'd have to really be listening to hear at one point, you said in the Bay Area, we have support groups or everything like toe fungus support, and you rolled right through it very quickly. And I was like, God,

Speaker 1 1:06:00
but you said that a moment that you did, as you said that everyone? Yeah, I did say. I remember what I said. Oh,

Scott Benner 1:06:08
no, I imagine you do. I'm trying to imagine a person listening going. toe fungus? And when's this gonna come up? Can I ask you if you don't get type one diabetes? Like really looking back at yourself? Honestly, could you have made it through the astronaut program? You think you were a real candidate for that? Yes,

Speaker 1 1:06:26
no. And again, part of that depends on timing it at the time, I had a focus and a dedication. That's really where I wanted to go. And I knew enough about it, I know knew enough at the time. When you're a teenager, you think you know everything when you're graduated from high school, you got the role by the tail, you know, and, and the sad truth is, you don't know why. But you don't know that You Don't Know Jack until you get to, you know, my or your age at least. And then you start to get this, this worry about maybe I don't quite know, Jack, I believe or whatever, then today, the world, that world is different. It's very different in a lot of ways that I'm quite vocal and opinionated about and one of which is I don't think the federal government ought to be involved in race travel at all. I'm huge fan of what Mr. Musk is doing with with SpaceX. And I think that's where the future of space travel is going to be. And if I wind up getting involved in it, personally, I commented in about a year ago in a in an online type one group, I said, I'm going to be the first type Dolan diabetic on Mars. And that was said, partly to elicit a humorous response. But there's a part of me that's actually serious about that. You know, I think that would I that's something I alien landed, sought flying saucer landed on my lawn, and the guy stepped out and said, Would you like a ride? I'd say bye.

Scott Benner 1:07:53
All right on to me and my insulin.

Unknown Speaker 1:07:57
Let me grab my coffee with you.

Scott Benner 1:07:59
I can't think of the name of the episode but I've had a type one on who she actually flies this the International Space Station.

Unknown Speaker 1:08:08
Oh, Haley, Haley spears.

Scott Benner 1:08:10
She's I don't even know if that's her. I can't I may be an Amy

Speaker 1 1:08:14
white headed out. I have a good friend Haley who's a type one. She's chosen fly. And she's a she's one of the backroom flight controllers for the ISS in Houston. And I know her through a program called Space settlement design competition, which is a way which I'm involved with, my younger brother has been involved with for 30 years, which is a program where high school kids get together over a weekend to design a space settlement. And as adults have the job of on one hand cat herding, and on the other hand, making sure they don't run off the rails. Technically,

Scott Benner 1:08:44
can I tell you how crazy it is that that you just said that? That's not the person I've have on. So April Blackwell. She's the NASA attitude determination and control officer, which means she pilots the International Space Station. Okay. I think there are two type ones doing that. That's amazing.

Speaker 1 1:09:00
Well, those are jobs you can do sitting at a control console. Yep. And a Control Center in Houston. And if you suddenly get a blood sugar crash, your hands aren't on a control stick. Right? You're not. You can't be a commercial airline pilot with type one diabetes, because of the risk of having a sudden accident.

Scott Benner 1:09:19
I've had one on they just they just let this guy do it. Really? Yeah. It just happened not that long ago.

Speaker 1 1:09:25
Well, that's recent. That's not historically that's not the case.

Scott Benner 1:09:30
No, historically, it has absolutely not been the case. But what's the

Speaker 1 1:09:34
guy who is also why historically, as a type one diabetic, graduating from the Naval Academy in 1978, I can't be a naval officer.

Scott Benner 1:09:39
Yeah, he so Pietro, it's episode 332. B, I think is the first type one to hold a first class medical certification from the FAA. Wow. Yeah. So he's, uh, I've had him on as well. Well,

Speaker 1 1:09:53
that that is that's history changing because Oh, yeah. In my early adulthood, one of the things I looked at as I've always wanted to get a private pilot's license. And it turned out at that time I had a friend who owned a small plane and he would take me down. When I worked at Rockwell we go down to Long Beach and he put me in the in the ease instructor, he put me in the left seat and plane off circle landed to get off the circle. And he looks at me says you're ready to solo and I said, seriously? He said, Yeah. And so we're driving back to the office and this this like, hammer Bong thought goes off my head, I'm wonder would be diabetic fat. How that how to fix that and turned out the time the answer was it was a mandatory denial for or not anymore. Is the guy anymore. Yeah, that's recent. That's, that's not my experience, my life experiences that was part of that barrier. There's down in front of me that door is coming up now a little bit. Yep. I'm happy. I'm glad. But that part of my life is,

Scott Benner 1:10:47
you know, looking to be a pilot at this point. Yeah. Yeah. To get

Unknown Speaker 1:10:51
to Mars at some point, but I think I can hit your eyes or

Scott Benner 1:10:53
Oren Lieberman. He works at CNN. I forget what I used to be the Israel reporter. I think he does something else now. But he's a he's a guy who, you know, flies his own plane. And, you know, gets around a lot in a small plane. So yeah, I mean, it's obviously things are getting easier if you listen to Petros interview, I forget the the salient details, but he somehow knew somebody at the FAA, and he could kind of start that conversation. I think that's kind of how it got the attention of them. They're like, Oh, CGM don't want

Speaker 1 1:11:25
him that. I'm glad he did that. And that's actually that's another reflection of how the the steady advances in both knowledge and technology have made it possible for those barriers. Were down and solid. And whenever removal to very slowly and very gradually now start coming up, right? I'm glad of that. Yeah, me

Scott Benner 1:11:47
too. No, absolutely. It's these happenstance IID, like connections where you just go, wow, if that person wasn't in that room to say that thing to that they would never know, it would just go on and on like that. But he knew about CGM good pilot, he wanted to be a commercial airline pilot, started a conversation with somebody and it took years and it snowballed into something. So I was in

Speaker 1 1:12:09
Dallas, January, and one of the things I did was meet up with a buddy of mine from Annapolis, who I had not seen in 40 years, but we've been just best friends for a long time. And he's a retired Southwest Airlines pilot, and he doesn't fly anymore because of mandatory retirement age. The FAA says if you're 65, you're no longer you can't be a type one or not. But he works at the Southwest headquarters facilities are Love Field. And so he took me into the facility took me into the flight simulator. And I actually took off and landed a 737 Max eight in this weather without a cover without

Scott Benner 1:12:47
turning rains for you.

Speaker 1 1:12:50
Everybody who I've told that story to says, oh, and the doors didn't fall off. And I said no.

Scott Benner 1:12:56
It's amazing. Well, you've had a life. You certainly haven't. You're still going very strong. How old? Are you?

Unknown Speaker 1:13:00
Oh, I'll be 68 in March. Good for you.

Scott Benner 1:13:03
That's wonderful. All right. Well, listen, James, good luck with everything, not least of which is finding a lady. Yeah.

Unknown Speaker 1:13:11
Scott actually had a question for you. Okay,

Scott Benner 1:13:13
nobody ever,

Speaker 1 1:13:14
I'm gonna put you on the spot a little bit. This is a thought that's been in my mind. You know, I've gotten to know a little bit about you and about your circumstances about how you came to all this, which really has to do with your daughter. Sure, fairly unambiguously. And it's also very clear that for a very long time you have been her pancreas. There's no question about that. And so the question, really, and I don't mean this to be confrontational, but it's this is how my mind works. I see something that I go, I wonder about. And the thing I wonder about is, and this thought has to have occurred to you, and you may have even commented on this or had discussions about this on your podcast, but at some point Arden is she's already an adult. Yes, legally. And at some point, she's got to be in charge all that. And maybe that's already happened, but for you, what's it like to have to consider? You know, I've been this my little girl's pancreas, and she was a baby. Yeah. And at some point, I have to let go that, to me, that's that. I'm thinking, what your thoughts and feelings are about that? And

Scott Benner 1:14:17
of course, well, I'd be happy to tell you. So. First of all, she is she takes care of herself. Now. I don't really have anything to do with it.

Unknown Speaker 1:14:25
Why? Because I noticed you earlier you always she's gonna.

Scott Benner 1:14:28
I do have like, I mean, I didn't contact her. But I there's a thing on my desk that just changes color when her blood sugar. It's called. It's called glucose. And, and it went to it got red, and I thought, oh, that's strange. Like time of day, I didn't expect her to be low around here. And I before you and I started recording, I picked up a piece of software that I have, and I saw that she had just recently Bolus for something and I thought, Oh, she probably just got it a couple of minutes early on her Pre-Bolus And she's fine. She's actually 140 right now. I mean, she and I haven't talked about her diabetes beyond I sent her a text yesterday and said, Hey, I'd bail on this pump site if I was you. And then she did. We didn't actually talk back and forth about it. The last time I've had like, real connection to like telling her about something is, you know, a low in the middle of the night that I woke up for. And, you know, I don't I made sure she was awake. I helped her adjust her settings when she went on the GLP medication. That's not something, you know, it's unfair, I think she could have figured it out. But I just said to her, like, you have to make your insulin sensitivity weaker. You know, and, you know, what is it now, and let's try this. And we just kind of moved it by 10%. Take a look and move it again. Other than that, I don't really have anything to do with it anymore.

Speaker 1 1:15:43
So, and, again, not to be confrontational, not

Scott Benner 1:15:48
by the way, I want you to know, James, this is a very, I hope this doesn't hurt your feelings. This is a very common question from old time type ones to me. Yeah, yeah. Well,

Speaker 1 1:15:57
so. So my way of thinking there's a difference between having been the pancreas and backing off and occasionally having a conversation. There's a difference between that and saying, You know what, I love you, dear, but you're on your own.

Scott Benner 1:16:10
So I kind of subscribe to the idea that people's brains aren't fully formed in their early 20s yet, and I've seen it I've seen a fair amount of research that says that people with type one diabetes benefit from parental support into their mid 20s. Okay, like, and I don't mean, like, hey, Bolus now or like, you know, change your pump. Like, I don't remind her to change her pot. I don't remind her about her CGM. Like she does that on her own. Right? She will come home from college once in a while and look at me and go, Hey, could you do this for a couple of days? Because I need a break. Like that kind of stuff. But you know, or will once in a while when she's home, we'll be in a restaurant, and I'll see your phone come across the table. And she goes, Why don't you get this one, you know, like something like that about her bowl, right. But for the

Speaker 1 1:16:56
most part, she's she's cool with you being with it being a collaboration,

Scott Benner 1:17:01
she doesn't seem to care. Now, I've made significant adjustments along the way I didn't go from like who I was when she was nine to who I was when she was 20. Like in a snap. The way I've always talked about on the podcast, and the way I genuinely believe in it, is that I don't think that teaching someone about their diabetes is any different than teaching someone about anything. Like you don't just scream a bunch of bullet points at them and go now it's your turn. You know, like, it's a very slow transfer of knowledge, I think is a lot of repetition. It's a lot of like, you know, Hey, did you Bolus for this when she was eight? You did? Great. That's great. How much did you do that? sighs I was thinking that much to like, you know, and then you don't talk about it again. Right. And then on and on and online. For years, like it's, it's always been my desire, and my goal to make it a very slow handoff so that she didn't notice that happen. So that didn't feel like at any point, you know, the fulcrum shifted, and all the weight landed on her and

Speaker 1 1:17:58
argued, okay, I understand. And that's actually a good answer the question kind of the way I asked it, have you ever actually talked with her explicitly on that specific topic? Oh,

Scott Benner 1:18:06
yeah, we've talked a couple of times, we've had a number of like, I don't know what you would call them, like, touch point moments along the years, because she was diagnosed when she was two. So and I as a stay at home dad, so I was with her the whole time. There's a couple of times we've sat down and I've said, Hey, I need you to take this more seriously. Or you see this here, like that can't happen, or we don't not Bolus, a blood sugar that goes over this number. Like we don't, we don't sit and that's then the non negotiable. We don't sit and watch a number that high. And so we go along the way. And we've sat down at times, and I've said, Look, you're getting older now. You know, there's, I see this one part of this, you don't seem to understand we need to talk about it, and sat down and we went over this whole thing. There's still things like she's still a kid. Like once in a while. She'll say something that like, like shocks the hell out of you. Like I forgot how to use my glucagon, I had to look into it again, or, you know, like a shot in my head, you forget that. For the most part, she's, it's gone the way I've expected it to go. But it's been a lot of thoughtful, quiet behind the scenes effort from my wife and I, and a lot of her being very receptive along the way, like we've had moments where she doesn't want to hear about it from me or something like that. But we've never had any long drug out like battles about it or anything like that. And I also know window like, I'm not good about it with my wife. Still, I'm still learning. I've only been married for 27 years. But with her when I see the resistance come from her I know to like back up, because nothing long term and good is gonna come from us like battling about one small, unimportant moment, you know what I mean? And so and,

Speaker 1 1:19:42
you know, to be fair, and in the interest of truth in advertising, I'm not apparent so I don't have the direct experience of being in the positions. I can't assert authority in that regard, but I am I count myself A fairly careful observer of how we humans interact. And I really think that, you know, parenting has got to be one of the hardest jobs to do. And one of the things I'm very grateful for in my life, also allied parents, in particular, my mother, who, when I was a young adult, had a, had a conversation with her at one point, and she made a comment on something. She grew up as a single child with a very emotionally abusive mother. And she made the she made it a personal decision, as a young woman, a young, newly married, newly become a mother, Woman Who, and this is in the days long before all the commonplace concepts we have floating around these that we can talk about, about self knowledge, and how to deal with past traumas and how to not pass those on. But she made a conscious decision. And this is the word she used me. She said, this abuse of the younger generation by the older was not going to go any further. So she had no idea. She had a con, she had a picture in mind of what she was going to not do. She don't think she had any specific knowledge about what was the right way or wrong way to implement that. But she had that, that thought and that, that deliberate, basic foundation. And I'm the mind my siblings, or we're the beneficiaries of, and that's one of the things and I

Scott Benner 1:21:20
grew up pretty poorly, like, why wasn't parented well, and you know, like, my wife, either my wife to her credit, because we got married pretty young, like, to her credit, she's like, she would, like help me with like, moments where she's like, You can't do it that way. And here's why. And then, you know, like, and I'm like, oh, like, you know,

Speaker 1 1:21:36
that's how I just gotta gotta be, you gotta be sufficiently receptive. Yeah, don't gotta

Scott Benner 1:21:40
be receptive about it, and like, and then it takes time to build, but by the time the kids were a certain age, like, I pretty much figured out, you know, that kindness pattern and why that was important and everything like that, not that I wasn't unkind. It's just that I grew up in a house where I got yelled at a lot. So if something got out of hand, like I thought to yell to stop it, you know what I mean? Like, that's just where I don't do that anymore for a long time. But when it came down to the diabetes thing, like you have no idea like, I used to write a blog before this. I've been at this like, a long time. And so I wrote a really popular blog, I was around people who all were writing but they had type one. And they'd always say to me, Oh, sure, hurry one sees good now. But what's gonna happen when you're not controlling it anymore? Knows, like, I don't like if you never had a kid like I'm, I'm teaching her at the same time. I'm like, I'm not just like doing it. And we're not talking about it. Yeah, that's a parent's job. Really, James is to say something, say it again, find a different way to say it, say the third time, say to 500th time, all without being annoyed by it or making you upset that you've heard it 500 times. All right, right. I just did that with diabetes. And it's been a very slow handoff. And it's going incredibly well, like I should knock on something. Yeah, but she's in college. And keeping her a one C and a low sixes. Like and here before college, it was in the high mid to high fives. So like, you know, I'm not,

Speaker 1 1:23:04
I don't have anything to complain about.

Scott Benner 1:23:08
Yeah, I don't text her and go, Hey, your blood sugar's 150,

Unknown Speaker 1:23:11
you should do something, what she studies. Oh,

Scott Benner 1:23:14
she's learning how to design clothing. She said, she's an art school, getting a design degree. So it was very interesting. As she was leaving high school, she had it narrowed down to pre law and fashion design. And she could have gone off and done either of them. And I was like, I wish I wonder which way he's gonna go, you know. And then finally, she said, I'm going to try this art school thing, even though she had never, like really participated in the arts whatsoever. Well, she's doing well

Speaker 1 1:23:41
me personally. As I say, I don't have kids my own but I have nieces and nephews. And I also have a strong conviction that there's no such thing as an adult, whether you've got kids or not, who doesn't reasonably have a an interest in the welfare of the of the oncoming generation. So I mentioned the thing I'm involved with called Space settlement design competitions. That's one thing I do and the other thing I do is I just later this year, I'll be fully qualified to be what is called a Naval Academy blue and gold officer and those are volunteers who helped shepherd high school students, juniors and seniors through the entire application process which is rapidly complex and incredibly competitive. There's something like one Wani or less people who apply for a given class who are actually admitted no kidding you know, more is the better but but this you know, help them identify the best possible candidates and and then helping encourage and shepherd them through the application process and keep an eye on as a goal. That's, that's something I you know, I want to be able to say, and whatever point I get to in my life, I've left something behind me that was that somebody else can get some values and worthwhile. I feel

Scott Benner 1:24:50
the same way about this. There's not too many days that go by that I don't think like we've put all this information in this one place. Like it's up to me to keep it alive. So other People can find it. And, you know, like, and keep building on it so that it continues to be valuable as, as norms, you know, change and technology changes and everything, I feel a lot of pressure about that some days like that, I should figure out a way to like, make sure somebody has it when it's over, you know what I mean? Like, you stop and think about it, there have been great websites along the years that have great information on them. Nobody knows where they are now, because they fall out of favor or whatever. And then all that great information is just gone. So maybe

Speaker 1 1:25:28
at some point, get all the podcasts, digitally copied onto a secure storage drive at some point and get it launched and landed on the backside of the moon, it's safe. I've

Scott Benner 1:25:38
already set it up with the storage company that after my death, they'll keep posting it. Like I've got that set up. And I am currently looking at and toying with feeding it into AI so that eventually it can just be a website where you ask the website a question, and it answers the question based on all the conversations from the podcast. Wow. So I'm working on that too. And then I gotta retire at some point, James, because I can't I can't talk as much every day. Although I probably could. But I

Unknown Speaker 1:26:04
am actually semi retired right now. So

Scott Benner 1:26:06
how is that?

Speaker 1 1:26:07
It's, it's new. Get used to the idea. And that was not voluntary. I worked for a company for 11 years, and they closed their doors last November. And I'm like, holy, I wouldn't I wouldn't read it, I wouldn't find the work. I

Scott Benner 1:26:23
look for a job. I'm 68.

Speaker 1 1:26:27
And I'm still doing work. I'm so but you know, I'm in a position where I've got all fired for those security benefits. So maybe I bring it up,

Scott Benner 1:26:35
hey, do you code Do you know Python and then stuff like that? I do.

Speaker 1 1:26:39
I am a coder. I'm not a Python coder, although I'm always got in the back of my mind that I've looked at that. And that's something that maybe I want to get a little more familiar with. I

Scott Benner 1:26:47
wasn't sure how much of that blended into your job based on when you started. That's all? Well,

Speaker 1 1:26:52
I've made my living in a number of different ways. But most of it has involved doing computer stuff one way or another. And most of that, in the last 30 years is involved things like AutoCAD, I'm actually an expert on I'm also an expert on using things like Excel. Okay, I specialize in generalization. So I have a lot of knowledge I have a great deal of knowledge about that goes at least a little bit of depth into many areas, a few years where I got a lot of depth. And one or two where I'm, you know, I'm your go to guy. The problem from looking for a job perspective is that that makes me instead of being even something as mundane as a round peg looking, you know, trying to find something other than a square hole. I'm an amoeba shaped peg. In a world where the holes are all grossly different shapes that don't fit any of them. That with any precision,

Scott Benner 1:27:49
I sometimes means that if I wasn't doing this, I don't know if anybody would hire me. And yet I'm incredibly successful at this one thing that gets, you know, very strange. So anyway, it's been great talking to you. I really do appreciate this. If you can hold on for one second. I just need to tell you something after we're done. But thank you very much. It's been a pleasure.

A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. You spell that g VOKEGLUCA g o n.com. Forward slash juicebox. I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast. Learn more about its implantable sensor, smart transmitter and terrific mobile application at ever since cgm.com/juicebox. Get the only implantable sensor for long term wear. Get ever since. A huge thanks to us med for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box this is where we get our diabetes supplies from you can as well use the link or call 888721151 for us the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us med. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#1254 What Kind of Influence

A mother shares managing her 8-year-old son's recent type 1 diabetes diagnosis, discussing the challenges of maintaining tight blood sugar control while balancing her husband's more lenient approach and the impact on their family.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 1254 of the Juicebox Podcast.

Today I'll be speaking with the mother of a type one who is also the wife of a type one and her husband's not great about taking care of himself, and she's worried it's going to rub off onto her child. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juicebox Would you like to help people who have type one diabetes maybe even yourself? Will if you're a US resident who has type one or is the caregiver of someone with type one, filling out and completing the survey AT T one D exchange.org/juice. Box will in fact support type one diabetes research. T one D exchange.org/juice box complete that survey you'll be helping after you fill out that survey save 30% off your entire order at cozy earth.com with the offer code juicebox get yourself the same joggers I'm wearing right now. The sweatshirts the shorts the shorts are saving my summer can be serious for a second cozy Earth shorts are saving my summer get 30% off with the offer code juicebox at checkout. Did you know if just one person in your family has type one diabetes, you're up to 15 times more likely to get it to screen it like you mean it. One blood test can spot type one diabetes early tap now talk to a doctor or visit screened for type one.com For more info. Today's episode of The Juicebox Podcast is sponsored by Omni pod and the Omni pod five. Learn more and get started today at Omni pod.com/juice box.

Emily 2:05
Well I'm Emily I am a 43 year old mom to a type one and new type one diabetic and wife to a type one diabetic as well. I'm also a full time nurse practitioner specializing in nephrology.

Scott Benner 2:22
Okay, so let's get my notes here. She said you're 43

Unknown Speaker 2:26
I am.

Scott Benner 2:28
I've turned 50 yesterday. She doesn't look Thoreau says you say you're 43 your husband has type one. He

Emily 2:35
knows how long have you guys been together? Say we met as ER nurses and 2006 and we got married in 2009. Okay, so

Scott Benner 2:47
20 years, about 18 years.

Emily 2:51
I'm on my lunch break. I'm not doing that.

Scott Benner 2:56
See? 1820 years you guys been together? Has he had type on the entire time?

Emily 3:00
He has not. Ah, would you actually you want to start with that story? Yeah, please. Okay. So like I said, we were both ER nurses. When we met actually, I believe he was a nursing student. He's a little younger than me. Oh, and he is 40 now, but he we were planning on getting ready for our wedding. And we were both Night Shift Nurses and he was starting to lose weight. He was working out. He was drinking lots of water. And I noticed he was urinating a lot. And I'm like, you know, you're dropping away pretty fast. Like I've dropped one pound you dropped in what's going on? And he's like, oh, you know, it's purposeful. I'm drinking lots of water. One of the bathroom a lot. Well, the night of our wedding shower, which my bridesmaids had made cookie thing. I noticed he was just urinating like crazy. It was like two or three in the morning. Like cleaning up the kitchen making room for all the new kitchen things and I'm like, You have got to check your blood sugar. And he was like, No, I've just had a lot of water and I was like this is more than a lot of water. So his mother at the time had it was a pharmacy tech and whenever things get expired in the pharmacies, they tend to throw them away which is probably a whole other podcasts we could talk about. So we had accrued multiple glucometers that were just like expired and opened that she had brought to us so I come up in the cabinet get one out check his sugar in it read high and he's like no it's expired. It's not any good. So I checked mine and it read like 80 and he so he's 26 years old at the time I don't think I mentioned that check his with a different one. Like I said we had a crude multiple ones. And again at red hot and I was like alright, let's you know put clothes on we're gonna we're gonna go figure this out. So he was not in DKA he had a blood sugar somewhere and the for hundreds, I don't remember exactly how hot so they basically made sure he wasn't in DKA checked his labs. It was we we went to the ER we worked at, and they gave him some IV fluids, and we called endocrinology the next day and started insulin.

Scott Benner 5:14
Before we keep going, is your microphone on a wire? It is not, is that you're using the one on the laptop?

Emily 5:23
No, I'm using headphones

Scott Benner 5:25
using headphones. But there's a microphone on it. Can you put it closer to your mouth for me?

Emily 5:28
Yeah. I can also find me to just

Scott Benner 5:32
feels like you're turning, it almost feels like you're turning your head away from the mic at times. And it's you're kind of going

Emily 5:38
I am fidgeting a lot. So that's okay.

Scott Benner 5:41
Just fidget towards the microphone. Did you at any point during this process? Think I'm gonna take my brand new Cuisinart and get the hell out of here? Or did you love them by that?

Emily 5:49
You know, I don't it never crossed my mind. Really thought like, alright, you know, it's one more thing. We're medical professionals, we can handle this. It's not a big deal.

Scott Benner 5:58
Okay, so did it end up being a big deal? And could you handle it?

Emily 6:03
I could handle it. So it's really funny. He had a horrible, horrible diet, he would say he was raised on cocoa and Little Debbie. So I'm very much a type A person. So I kind of kicked in that type A personality started controlling all his meals. Because a Wednesday went from I want to say it was summer 1214. down to six, something about the next check. But shortly after that I released control because I had a your I like to tell him this on a regular basis. You're a grown ass man and a medical professional, you can handle this. So that was the last time we saw a six something a one see, he

Scott Benner 6:42
can handle it. So I'm still I took a note here from your husband was like, if I just drink a lot of water, I'll lose 10 pounds. That's what I learned. Yeah,

Emily 6:51
no, that's not how that works. No, unfortunately.

Scott Benner 6:56
So he goes, so you put it, you know, I mean, listen, I'm not saying put it on him like you put it on it. But you know, he gave his control back to him. Yeah, he didn't do well with it. From the very beginning, your kids mean everything to you. That means you do anything for them, especially if they're at risk. So when it comes to type one diabetes, screen it like you mean it now up to 90% of type one diagnosis have no family history. But if you have a family history, you are up to 15 times more likely to develop type one, screen it like you mean it because type one diabetes can develop at any age. And once you get results, you can get prepared for your child's future. So screen it like you mean it type one starts long before there are symptoms. But one blood test could help you spot it early, before they need insulin, and could lower the risk of serious complications like diabetic ketoacidosis or DKA. Talk to your doctor about how to screen for type one diabetes, because the more you know, the more you can do. So don't wait, tap now or visit screened for type one.com to learn more. Again, that's screened for type one.com. And screen it like you mean it

Emily 8:17
has moderate control. And I think a lot of it, he doesn't listen to your podcast, I feel okay saying this was it was such a lifestyle change, which I know everyone who experiences diabetes at any time. Once you accept it, you realize that but he truly had a the best way I can say it isn't like mortality kind of kicked in. And he had a lot of you know if something goes wrong in the world or whatever, like, that's it like if I don't have this insulin. That's it for me. And it has been I would say that still in the back of his mind, you know, almost 20 years later that this is still making life a little less easy.

Scott Benner 8:58
You're saying that he's fearful of a flood coming? Power outage? Zombie, something like that. Yeah.

Emily 9:05
It's hilarious that you pick zombie because he had a zombie fear when we first met.

Scott Benner 9:12
You just data them anyway.

Emily 9:14
Yeah, why not? Yeah.

Scott Benner 9:16
I don't know. Emily, we're gonna start wondering about you in a couple of minutes if this story keeps going this way. No, I that's interesting. Like that feeling because I see people talking about it online all the time, like that fear of like, what if something happens? And I just recently said somewhere that my daughter and I had this conversation because she asked me at one point, you know, what if something happens, like what if the world gets upside down? I was like, Oh, you'll be dead pretty quick. And she, you know, did she's like, what I was like, come on, you know, right. And you know, she was older when we were having the conversation, but I think it was valuable for her to hear. And I actually told her I said if this really happened, we you know, manage with your insulin as long as we could. We'd stretch it out. Start aiming for higher blood sugars like you know, start thinking about like light including a life, that kind of thing. you'd stop eating carbs. And I was like, but eventually one day if we ran out of it, yeah, I mean, that'd be it, you know? Yeah. And so, but I don't see her hanging on to it and worrying about it. But you think it's something that's with him?

Emily 10:12
Yeah. And it may be maybe the age thing, I don't know. Or it may have been his personality to start with the kind of doom and gloom. But I definitely hoard things like not insulin as much as I can, but also like, beef jerky, and things that if we did have an emergency that he could eat, and now our son,

Scott Benner 10:34
yeah, so so it's been a while now he's had type one for a while. I mean, the are you comfortable sharing what his a onesies are generally? Or do you not even check in with him?

Emily 10:42
So yeah, I actually know his most recent one from last week, it was eight. Okay,

Scott Benner 10:46
and now for you. If we put you back in charge of him, you okay with an eight? No, I'm not okay with that. And then your son's diagnosed when

Emily 10:56
he was diagnosed this past August, recently. Okay,

Scott Benner 10:59
so that's not long ago, six months ago, maybe? Okay, how old is your son?

Emily 11:06
He's eight. Now he was seven when he was diagnosed.

Scott Benner 11:09
Do you have any concern that your husband is going to impact him to an aid agency? A lot of people in my private Facebook group talk about their love for Omni pod five. Have you seen those posts and thought, Well, I wish I could have that experience with an insulin pump too. If you answered yes to that you might be experiencing FOMO FOMO FOMO. Yeah, you guys got me all twisted up on this one? I think it's FOMO fear of missing out on Omni party. It's FOMO. All right. I'll keep going. Symptoms of FOMO may include but are not limited to wishing you could wear outfits without pockets or dreaming about walking past doorknobs without getting your tubing caught. Maybe you fantasized about jumping into a swimming pool without disconnecting from your insulin pump first. Good news. You don't have to suffer from FOMO. any longer. You can see what you're missing by trying Omni pod five for yourself with my link Omni pod.com/juicebox. No longer should you have fear of missing out on Omni pod?

Emily 12:12
Um, yes, it's a complaint argument that we've actually brought up to his pediatric endocrinologist in the past, because we do argue about tight control versus the fear of low blood sugars. And apparently, it's very common for type ones who have experienced the roller coaster and the frequent lows to fear the low and wear me specializing in ethology and knowing what it will do long term to the kidneys. I want tight control, good steady control. And he is more willing to let the blood sugars to get much higher for much longer than I am. And it I wouldn't say it's a battle, but it definitely can, can bring up. You know, we're still new to it with our son. So it can bring a lot of what do we do we treat this do we watch this? What do we do for this? There's a lot there's a lot more discussion than probably most parents actually have.

Scott Benner 13:08
Yeah, well, that's really interesting. So the diagnosis of your son did not take your husband's perspective and change it. He just shifted it onto your son. So while you're out there going, I think we should maybe do better. He's saying no, this is okay. Correct. How long do you think it'll take? Because this is your husband is is embroiled in a psychological turmoil right now? Yeah, you will eventually get out of but I will say that the most common thing that I hear from people is that I finally did better for myself for someone else. Like right for like, I love my wife. So I did better. I didn't want my kids to see this. So I did better. Like that's what really commonly hear from people. So you're just very new at the moment. Why did you find this podcast?

Emily 13:56
Again, that type A personality the minute he was diagnosed, I went online, I started Googling from tic TOCs Instagrams app, just sort of following people left and right type one moms, type one kids, like how can I make this better for him? And went on podcasts because the pediatric hospital that we took them to was about an hour away. So immediately, I started looking for podcasts just for the drop, and found it.

Scott Benner 14:22
I mean, what's your son's a one, so you can I ask?

Emily 14:25
So he was 7.9. And there's a little story behind that. But he had the flu last month, so we had a lot of a lot of trouble keeping him down. In December

Scott Benner 14:35
while he had the flu, that was he managed with MDI or a pumper, and that's for both of them. He's

Emily 14:41
NDI right now. My husband has Omnipod but he has been MDR My husband has was in the eye for a long time he was on the original Omni pod. And believe it or not, even as medical professionals, our insurance is pretty crappy and the cost of Omni pod was I think we still owe the money to be perfectly honest, it was outrageous.

Scott Benner 15:02
Like we still have the money. But does he ever CGM?

Emily 15:06
He does right now for a long time he was on labor, right? We were paying like $75 a month for the labor. Right? And then now they're both on Dexcom sixes.

Scott Benner 15:16
Do you guys work for the same hospital? Still? We

Emily 15:19
do not. My nephrology practice is actually privately owned. And we are consultants at hospitals. And he currently is at a different hospitals system for an urgent care in the same town. Well,

Scott Benner 15:30
so you, you both are medical professionals, but your insurance doesn't cover, like, give you good coverage for devices.

Correct? Oh,

that's nice. You know, that's a decision that your employer makes.

Yeah, yeah.

Have you ever tried talking to them about it? So

Emily 15:50
once I finally got my son, so my husband carries his own insurance, the rest is on mine. We've recently crossed covered him on both of ours, but my son's CGM got covered completely. Once I've thought the insurance company because they originally had denied it. But my husband was actually working for an emergency department and the coverage was horrible. That being said, I don't know how much work he I don't think he put any work into calling the company and getting the prior authorizations and things that probably should have been done that I did the minute I got the denial. So a lot of that I put on him. I don't know how much is what the insurance problem is versus what just the lack of

Scott Benner 16:33
work. You said, Do as I say, not as I do example.

Emily 16:38
I was gonna say he's a do as I say,

Scott Benner 16:42
Well, if you would tell him he would do it, by the way, but you stopped telling him? Yeah,

Emily 16:46
I think I've told him more than once. And you know, back to the euro grown ass man. situation. So I'm

Scott Benner 16:51
letting it go that You've robbed the cradle here. Emily, I'm seeing what's happening here. You guys have just the one kid? Are there others? No,

Emily 16:58
we have an 11 year old daughter. Oh, okay. So

Scott Benner 17:02
is that autoimmune running your husband's side of the family? He

Emily 17:05
has a cousin who was type one, I do not know of any other family members with autoimmune problems whatsoever. Now I have celiac, okay. And multiple family members who also are celiac. And actually, when we were pregnant with our oldest, he had asked the OBGYN You know, what are the risks of our child having type one? And she said that since I was not a tough one, it was a low risk.

Scott Benner 17:34
About that. Yeah, maybe what she meant was, Oh, you already had sex made a baby. Why are we talking about that? too? I know. It's too late now. Exactly. Oh, my gosh. Interesting. So my first thought here is if your husband and your son's a onesies are matching. So specifically, my expectation is it's just the rhythm of your household that leads to that eight,

Emily 17:56
they have completely different diets really? Well, my son started at an agency five months ago say once he was 12.9 I believe. Now it's still coming down. It's still coming down. And his his endocrinologist doesn't want us tightly controlled yet, much to my dismay.

Scott Benner 18:14
Does he think he's honeymooning? Yes, he is honey money. Okay, fair enough. But, but listen between you and me a seven, nine and just turn up the basil a little bit? You know, maybe it'll be a seven.

Emily 18:27
He does have a very weird insulin. I don't know, I just thought a reaction, but I'll go into it in a minute. But um, it's weird. So I play with insulin a lot. And there was no chronologist as far as like her again. But I adjust it based on what he's doing on a regular

Scott Benner 18:43
basis. Good for sure. The algorithms are adjusting constantly. Yeah. I mean, from a basis of a good of a, you know, a starting point of a good setting, of course, but they're still adjusting up and down all the time. It's it's almost never ending. So you know, to say, Me my experience, raising Arden on MDI and then just the pomp and then eventually a CGM became a thing. Like, it's not like I got it. Finally, it's like it came into existence. And then, you know, we started doing that. Then it took me a while after I had a CGM to like, look at what was happening and make sense of what was going on. But, you know, even once that was all together, you're still you know, I mean, there's a pretty big aspect of the Pro Tip series where I talk about Temp Basal going up and down and, you know, bumping and nudging because all I was really doing back then was I was being my own algorithm. You know, I was taking it away to all those. Yeah, right. That's all you're doing. So like, now I watched the algorithm do it on my Ha, sucker. Let him do that. Not me. Yeah, that now that him has a little app on her phone, you know, right. It sounds like you'll get there. But my question is, how long are you going to not say anything? Once hubby starts saying stuff that goes against what you want to do for your kid. That's gonna be a bad day.

Emily 20:06
So the I won't let me think of an example

Scott Benner 20:11
I'm gonna hold it in and go Axe Throwing, what is it you're gonna do, I'm like, because it's gonna happen, like, you're going to titrate his agency down, right? And it's gonna get into the sixes. And then you're going to you're going to know though, the work that goes into that. And then one day, there's going to be a rise in a blood sugar. And you're gonna say, How come you didn't Bolus and he's gonna say he's fine. And then you're gonna go, Whoa, and that's gonna be the end of it, then fists are not fists, you probably won't hit anybody. He seemed like a nice, but like words, at least, or upsetness. Like, it's like, I want to get ahead of this for you is what I'm saying? Well, okay,

Emily 20:41
so it's already happened. So sorry. I don't even know how long ago this was. It was maybe October, November. So he was diagnosed in August. So I had actually slipped away my husband, I believe was at work. And I had gone off to do something and my daughter comes up to me, and she says, Ben's alarm is going off. And he keeps ignoring it and saying it's fine. And so we've taught her kind of everything that she needs to know to help out. She's very bright and very helpful. Firstborn. So she knows she knows what to do in an emergency. She knows you know, what an alarm is, like, what? She just knows everything that needs that she needs to know, at 11 years old. So I came out of out of my room, and I was like, you know what's going on, but and he was like, it's hot. No big deal. It'll come back down. And I was like, huh, ha ha, like, What do you mean, it's hot. And I snatched my phone up, and it was high 210 to 300 arrow up, and I was like, okay, so what did you eat? Why did you eat without insulin? And what do you mean, it's fine? And he said, well, that says it's fine. He does. This is not a big deal. And I was like, Well, absolutely not. So I made it like, that night. I was like, Look, Bill, Ben's already assessed my son, this name has been on the bins already picking up on your behaviors. So you're gonna have to change him. For this. It's going to be a much bigger battle.

Scott Benner 22:06
Yeah, I don't think he's going to enjoy living in the garage at all. But if I was him, I'd shift now. Yeah, he's just all I could think of when you were talking about like, this is where this is gonna go. And someone's gonna win and My money is on you. So

Emily 22:22
yeah. So my husband's a Wednesday, you know, I don't, he doesn't need for all the diabetics listening, do not take this as advice whatsoever. He works 12 hour shifts and frequently drinks coffee and does not eat at all and a 12 hour shift. He says his blood sugars are better when he fast and but then he binges once he gets off work late in the evening. And that is why his control was poor, in my opinion, if he would schedule regular meals and have a routine, because he doesn't work every day. So that's not a routine, I think that control is much easier.

Scott Benner 22:57
See Pre-Bolus thing is meals.

Emily 23:00
Not in the way that you think of it. I don't think he Pre-Bolus Is anything because he doesn't plan. Because usually by the time he gets home, you know, we're all asleep, even though it's 839 o'clock at night, but you know, he may go back Chipotle and get a burrito bowl or something. And then he'll sit down and he might give himself a few units and kind of see what happens. But then he'll get up and get chips and salsa or something like that. And then he'll give himself a few more units while he's eating that. And then I'll get up at four o'clock in the morning and I will hear his Dexcom going off on his phone almost every morning alarming. And I'll be like, Is it is it higher or is it low? And it's 95% of the time it's high. So

Scott Benner 23:43
taking us take out for a minute that you're I'm assuming you love him and you know that you care for him and all that stuff and you don't want there to be a bad influence for your kid. Go into your training, though, isn't nephrology? You know, in nephrology, like, are you not worried every time it happens? This is like not eating you up inside.

Emily 24:01
So actually brought home a urine just in the fall. Or maybe it was late summer and I was like there's I don't know if you know this. You probably do but protein in the urine shows up a lot of times as bubbles. I had noticed bubbles in the toilet. And actually I think it was coming from our son, not him because it was pre diagnosis. But I said there's bubbles in the urine and I want you to do a 24 hour urine before you're one of my patients. He ended up not doing a 24 hour urine, completely ignoring me and I got mad and threw it in the trash. Yes, I watch his lab. They'll watch his kidney labs very closely. And I tried to explain to him as I do all my patients that that sugar is damaging even at good control. You know you're gonna have some damage from the ups and downs and it's delayed. That lab result that we're looking for is behind the ball. By the time it's telling us something's wrong but He pretty much it's like, my labs are fine. It's not a big deal. My labs are fun. And I'm like, today they are.

Scott Benner 25:04
I heard a person recently say they wanted to get in on top of their health, this person does not have diabetes, but they are significantly overweight, like, twice probably what their bodies should be carrying. They were like, I'm gonna get on top of this. And they went to the doctor and came back and said, my labs are great. I don't know that that matters. Like your weight, your weight, your weight over 400 pounds. Like, I don't care if your laps are okay, but and they took my labs, okay, I don't need to do anything. And that was the end of it. You'd

Emily 25:35
be surprised the amount of people who you could look at and go, there's no way you're not a type one diabetic type two diabetic, just from the morbid obesity alone, and then they're a onesies normal, and all I can think is your liver. It's something holy.

Scott Benner 25:47
I'm not I'm not even equating it to diabetes. I'm just saying that when something is so like, obviously not. Okay. That people will write it off. If they get a test back. Test payment. Fine. It's okay. Don't worry about like, you know, like, you know, have you tried, Emily, listen between you and me. I've been married a long time. Have you tried just putting a pillow in the middle of the bed and saying we can move this when you're a one sees under seven? Because I'm a boy, that will probably work pretty quickly on me. You know what I mean? So honestly, I think you're overthinking the whole thing.

Emily 26:17
That's hilarious. It's hilarious. I didn't want to tell the story of how my son's diagnosis came to be if you have time for that, too. Please, please, I'd love to. So my son was a little overweight. At seven years old. He loves Legos and hates to sweat. We, we always say he has a whole lot of lazy in him. And so actually last April, and I will say we are very pro vaccine in our family. So my kids are always vaccinated. But last April, he had gotten the flu, and he got flu B. And he was sick for about two weeks and dropped about 15 pounds at that time. But he wasn't eating and he was really overweight. And so we didn't think a whole lot about it. He looked healthy, with losing 15 pounds. And over the summer, I said this is enough. And so every morning before I left for workout would make them come outside and go for a half mile walk to start their day at 730 in the morning. And so he dropped about 10 more pounds during the summer. A lot of people commented, you know, he looks like a new kid. He's lost so much weight. And we're like, Yeah, I mean, he was sick. He lost weight, the weight loss stop. Walk down summer. Yeah. You know, yeah, I mean, he's lost weight. He's normal now. And he got to where he was eating nonstop. I mean, like more than my husband. And I was like, son, you're I mean, you're eating more than a girl man. Like, I think you've had enough. And this is right about the time school started back in August. And he's like, but I'm just so hungry. And he was starting to sneak food. And he was drinking, I would say he was drinking a lot. But he and I both typically drink a lot of water. So I didn't really think much about it. Because it wasn't, didn't seem excessive, necessarily. And so my husband and I had actually met, I had a little break in my schedule similar to today. And we met for a walk. And it was on a Thursday. And I had said, you know, Ben's circles under his eyes, which he's always kind of had a seem a little darker. And he said, Yeah, what are you concerned about? And to say I have anxiety is to minimize the problem. But I said, you know, what, if it's leukemia, and he was like, Why do you always go straight to me? And I said, I don't know, you know, he's just gotten so thin. And he's got these circles. While we're to we'll give it a few more days and see, kind of see how the week plays out. So, Friday morning, he got up and he had wet the bed, which was unusual. And he kind of just said, my, my husband said in passing been, you know, wet the bed last night. And I was like, Oh, that's weird. So Saturday morning, then gets up early as it is to about 6am. He said, You want to get up with me? And I said, Yes, we got up. And he said, Can you get me a glass of water and a bowl of cereal and a glass of water with cereal? That's weird. So I said sure. And he Cinnamon Toast Crunch, which is you know, lovely. And then he said, By the way, I wet the bed again last night. Dad put a blanket over it. Can you wash my blanket? And immediately, I went and woke my husband up and I said we have to check his sugar. And he was like, What are you talking about? And I was like he's wet the bed twice. That's not normal. And he just asked me for water. So we checked it. It was about 450. I immediately started solving. Yeah. Because I said he's not my blood type. He can't have my kidneys if you need

Scott Benner 29:45
them. That's where you went to right away. Immediately immediately.

Emily 29:48
I said Norris my blood type is our daughter. He's not he's your blood type and y'all can't share kidneys. You know, what are we going to do? And so we just got him dressed. And my husband I took him to the Children's Hospital an hour away in Atlanta, and I took my daughter to volleyball practice and then came home packed bags. And by then he took them to the hospital. He was in a mild DKA. He ended up on an insulin drip for about four hours. That was a Saturday afternoon, we were able to get all of our diabetes education convinced them we knew what we were doing and lead by Sunday afternoon. We assume it was triggered by the flute. My husband, we don't know exactly what his trigger was, unless it was just the stress of getting married. But it was very, it was very overwhelming.

Scott Benner 30:33
For everybody, for you specifically, probably

Emily 30:37
from a specific oil, you handled it differently. I'm mainly went to Oh God, how can I keep him off dialysis. And my husband went to a different place have this as my fault. So we actually did the trial net testing my daughter and I at one of the juvenile diabetes walks. And because like I said, I jumped all in. So I got a team going, we went and did all that. And she and I are both negative for antibodies. So even my son recently got mad at my husband and said, This is your fault. You gave me this diabetes. That

Scott Benner 31:10
sucks. I feel I feel bad for your husband. That's terrible. Yeah. It's horrible. Do you guys have any thyroid in the family? Multiple

Emily 31:17
women in my family? I do not know if I don't know of anyone on his side of the family. And I do know that there's another trial that for antibody type thing that will test for the celiac. My son is negative for celiac currently. Yeah,

Scott Benner 31:33
but you and your husband are like a, you're like a perfect storm. Really? Yeah,

Emily 31:37
we really are. Yes, my mother had Graves disease. My grandmother has Hashimotos. So it's something that I'm keeping an eye on. I'm not convinced my daughter's not celiac now, but she does not feel the need to be tested and does not feel like it's important enough to her right now. So I'm letting her enjoy easy. Carbs.

Scott Benner 31:58
I can hear all the celiac people yelling silent celiac at their, at their iPhones, right? Yeah. Or Spotify.

Emily 32:04
I mean, it took me it took me many years to convince a doctor what was wrong with me with celiac. So I'm prepared to battle for her when the time comes. But

Scott Benner 32:13
well, so I don't know where to go from here. Wait, I do know where to go from here. I'm sorry, I apologize. You are having a really interesting, but not uncommon experience. And I know this because I've spoken to a lot of nurses who have children have been diagnosed or have been diagnosed themselves or had a spouse done, what have you. And they start from this very basic understanding of diabetes, because if you're if you're inpatient or your emergency, like your understanding of type one's pretty basic, and you don't really the way they manage it, I mean, to call it management really is. I mean, that's a loose interpretation of what's actually happening. So if

Emily 32:53
you could only if you could only say the way this my hospital managers talk, or diabetes in general, as an inpatient, I'm doing

Scott Benner 32:59
a series called cold wind, I'm getting a good feeling for it from anonymous healthcare workers. So don't worry, I horrible Yeah, I know what's up. But that's, that's your level of understanding. And then now you it's in your own life. You know, originally with your husband, you were like, if we do this, we'll be okay. His agency was very good under your tutelage. And then not so much when he's out on his own. He's impacting your son in a similar way, you are coming from a different perspective. And, and, like, how do you see this shaking out? Because in my heart from a third party, I think what are finds the easiest path? So your son's going to follow your husband because it's easier.

Emily 33:44
And we already have times where even the doctor was like, what happened on this day, thanks to Dexcom clarity, you know, they can pull up all these charts. And I said, Oh, that day, he snuck I think, apparently because I had the same exact question about that. She goes, okay, okay. Maybe

Scott Benner 34:00
that's my point is that if if you're preaching, health and wellness and you know, Pre-Bolus thing and that stuff, and your husband saying it went up, it'll come back down. It's okay. Like, I don't see how a an ammeter a young child's going to go for harder. You know what I mean, when they're making a decision, and then that's going to leave you in a bad spot?

Emily 34:23
Yep. Yeah, I'm okay with being the bad guy, though. So

Scott Benner 34:26
you're the bad guy. Well, I don't think you're the bad I don't that doesn't make you the bad guy. But I but I understand what you're saying it. It seems really unnecessarily upsetting to me, you know, because, because at some point, I mean, we are ignoring what an eight a one C means. Right? And he's got it now. Right? Your husband has to know, he understands. And so now we understand it's happening to him. He's understands it's gonna happen to your son. And I don't really know what my next question is, other than to say it's a really bad situation. Hello, I'm wondering how you're going to handle it. So

Emily 35:02
my first step is to convince my son which has been very difficult to try the Omni pod. He hates adhesive. And we finally, this last Dexcom change, got a routine that was not painful and I was able to get that bad boy just slide right off. So I'm hoping by the time we do our pod prep class in February that we will have him convinced to give it a try. Because I mean, he's used to snacking and eating what he wants. And while I still wish I could get him to rein in that sweet tooth. I know from treating diabetics day in and day out that they can't help but crave sweets at times more. Not necessarily more, but I want him to understand the balance of he can have really whatever he wants in moderation with insulin, and he still has honeymooning so it makes it a little more difficult because there's so much he can have without insulin. He goes all day he eats an omelet in the morning school. He eats a freeze dried strawberries, Atkins chips, ham and cheese, no sandwich just ham and cheese every single day he eats this, and he doesn't need insulin. So then he comes home. And I give him insulin for dinner. But he's still very much. I don't know, accepting understanding, fearful. I mean, there's so much emotion for a child who remembers life before and is still trying to adjust to life now. It's difficult. But like when he had the flu, this past December, he started, his blood sugar started going up. So I took as long acting he's on 10 of ones. So I took them to 11. And the next night, he was still high. I mean, like I'm insulin, dosing him every two hours was short acting to keep him at 200. He's thought take him to 12. And he's still hot, though, I take him to 13. Because I was like, we gotta get this down. Luckily, he didn't have ketones. And His correction factor was 90. So I took it to 80. And he was supposed to round supposed to round down on his insulin, which I disagree with around that bad boy up. And then I just got to where I just added half a unit every time if he needed to. I gave him two and a half y just to try to keep him at 200 for a minute. And I mean, it worked, obviously, but an eight year old can't do that for themselves. And unfortunately, I do work full time and can't be there all the time. So

Scott Benner 37:27
you're thinking about an algorithm? Yeah. Okay. I mean, let's you can sell it. It's no more shots. Yeah, no, we've tried that. He's like, I don't care. It'll be easier to eat what you want. If you go on that route?

Yep. Yeah.

Have you tried therapy? Actually,

Emily 37:47
yes. His provider has integrand ologists. We've established with a psychologist, they have two in their practice that are diabetic, trained, or one of them, I believe, is a diabetic themselves. So yes, we're in that route, as well to kind of break through some of these. And what's really funny is, my daughter is tight control my son, when he had the tiniest, tiniest injury in the whole neighborhood knew. And, but when it came down to this, he's been a real champ about it. So I try to give him as sure as much credit as I possibly can.

Scott Benner 38:25
So it's all very new. I'm not I'm not saying it's gonna be perfect right now. I just think you have specific challenges. I mean, his age, you know, his general demeanor on this, you know, the influence from another parent. Those things are on pill. I'm sorry, I'm sure he's a great guy. I'm not like I'm not on them or anything. But like, you know, it's just like it is what it is. There's plenty of people with type one walking around with a one season, they can do whatever they want. I'm not telling them to do differently. But you have a perspective. And you're saying I don't want that. And these forces are going back and forth. The kids obviously seems like personality wise might be more like your husband. Sounds like your daughter might be more like you. That seemed fair. Yes. Yeah. So you're he has a lot of uphill battles there. And then you're going to be the the only way Listen, I don't want to be the Ghost of Christmas Future. But the only way this is going to work is if your husband spearheads it. Yeah, and not just listen to your mom. Yeah, like because that's not going to work either. Like he's going to have to like get himself a CGM manage himself. See, see what's really possible and then pass it on to your son.

Emily 39:31
Yeah, that's all and I mean, he. He's tried like, he's got the Omni pod. And so he'll say like, you want to pull this off my son, you want to help me? You're gonna press the button to start it and Benjamin's like, Absolutely not. I have no interest in that whatsoever. So

Scott Benner 39:45
I see what you're doing. You're trying to soften me up.

Emily 39:47
Yeah. I'm not doing that.

Scott Benner 39:50
I mean, listen, I know there are people who slather oil on them, they get into they slide off like all kinds of stuff. I always just hold on I'm like just grabbing yank it off and it'll hurt For a second Yeah, be done with it. That's

Emily 40:01
my husband's philosophy. Yeah, grab and yank baby oil and a bathtub slid right off. So I

Scott Benner 40:08
have such an inappropriate joke. I was gonna say that's gonna be his philosophy about a lot of stuff if he doesn't get this together

sorry. Yeah, I don't know. Like you're in a really weird position. And I don't know that it won't come together. Actually, may I be honest? It probably will. Yeah, what I think will happen is that some times gonna pass and your husband is going to have his come to Jesus moment. And then he's going to write himself and he's going to do it for your son, and then he's going to drag everybody along with him. And that's what's gonna happen. I think you're in the middle of two different adjustment periods right now. I think you're in the middle of your son's diagnosis, from his perspective, and he's not looking to be, you know, wearing a bunch of stuff right now. Right? And you're looking at your husband gonna have to get past the guilt, and then get on to the being a parent part. Yeah. And he's gonna end up saving himself by mistake while he's saving your son. Yeah,

Emily 41:04
that would be wonderful. What?

Scott Benner 41:05
What I see happen all the time. And people. It's very common. It's something human that, you know, it just happens over and over again, people just don't do things for themselves. I don't understand it actually, like, look at you, you're running around for your kids. You know, you you know, your husband, your husband's like, I know what to do. I

Emily 41:24
wouldn't say we had an unhealthy lifestyle. But we didn't have the most healthy lifestyle until COVID hit. He was actually working in the emergency department at that time. I was in nephrology, and I was like, Well, I'm not going out with that. So I immediately quit drinking wine as a coping mechanism and started exercising. And I was like, I've got to be a good example for the kids. I've got to be healthy. You know, we're not dying, working in a pandemic, this is ridiculous. And so they, they see that, and they can appreciate that. But it's really weird. They don't do it for themselves. So it's a battle, would

Scott Benner 41:58
you catch a glimpse of yourself in the in the cabinet door with a glass of wine at three o'clock in the afternoon during COVID? And you're like, Oh,

Emily 42:05
I was like, Well, what I what I tell everyone was I drank the first month away, and when that didn't solve any problems that decided to try something else.

Scott Benner 42:14
I don't remember. I don't remember March of 20. Oh, that's something I listen. It's life. You know, it's a process you're, you're going to come up against things and find ways over under and around and some things you're going to meet head on. This is going to be one of those things, it's going to come to a head in less he finds a way around first, because you're going to get pissed at some point.

Emily 42:38
Like, a lot.

Scott Benner 42:39
I'm just telling you like the I've lived through the I've lived through the feeling of giving every minute and second of your life to making sure that a blood sugar is where it's supposed to be and then seeing somebody else come in and get up. And you're like, Whoa, what are you doing? It's like someone walking on your freshly mopped floor times a million. You know, you're like I just got done fixing this blood sugar. What are you doing? Oh, yeah,

Emily 43:04
I mean, even his school nurse will use two of them. They have two of them in their school that alternate. And one is just like, like, I'll call her up. I'll be like, Hey, did he have something because he went from 120 to 200. Like what's going on? And she'll be like, Oh, he wanted a dumbed down soccer and I just couldn't say no. And I'm like, cool, but no, your sugar. And like,

Scott Benner 43:27
who couldn't say no, I'm sorry. The school nurse school nurse, what do you mean?

Emily 43:34
And or they'll call me and go hey, he's 200 But he's about to get on the bus. So do you just want to fix this when you get home? And I'll be like, I mean, is he 200 own up? Is he to me? How

Scott Benner 43:44
long is the bus ride? Yeah, yeah, I

Emily 43:47
mean, like, where are we at here? And so they worry about and honestly and his elementary school which is quite a small elementary school there are four or five top one kids right now so and he's the most recent one so it's not new for them this in the nursery is very lenient is actually a very well established he was an emergency department nurse she was a flight nurse like she's got a lot of experience. I don't know what why she doesn't want to treat his blood sugars or

Scott Benner 44:18
why she's unable to say no to a lollipop

Emily 44:22
I find them and it's brought back a lot he brings them home a lot I'll say that

Scott Benner 44:25
from the sugar from the sugar pusher this

Emily 44:29
from and I hate it I mean you know he's in second grade so they they reward the kids with candy so often and it seems you don't think about until it becomes a problem. So you know once a week coming home with a sucker not a big deal earning a Skittle every so often for getting a correct answer, not a big deal. When they're diabetic and they're in five Skittles, you know, it can be a big deal. So,

Scott Benner 44:53
Emily, I'm gonna say that I could probably find a couple of psychologists and line them up and tell you that rewarding children with candy is probably not a good idea. That's Oh,

Emily 45:02
yeah, they do it though. It's it's an N I've always said like you don't you don't need a starburst. Like I don't understand get a sticker.

Scott Benner 45:09
It can't they have a sticker where I don't know how good grade. Yeah. How about an A, let's just go with that. They used to give us pluses and minuses and then we could trade them for, you know, you made a little currency. Okay, you build up 100 pluses. You could buy, like a half a letter grade on a thing or something like that. You know, they mean, like, yeah, yeah. I'm just picturing your children's educators lobbing Skittles at them when they're getting math problems, right. One plus one is what two Oh, right. Here you go. Let's see if we get in your mouth. Yeah,

Emily 45:38
it's pretty close. Oh, Jesus.

Scott Benner 45:39
You know what? I can't I can't tell you that this conversation has left me very upset. And I feel very hopeless. I feel very hopeless. I keep searching for like the bright light here. But you're not up to it yet. So it's not completely up to you. So Oh, wow. Well, here, tell your husband this. When my daughter was diagnosed, her endocrinologist pulled us aside after like the second, it'd be like our second visit. And she shooed our kids out of the room and told us that she goes, Hey, you too. The instance of divorce is one and two. But when you have a chronically ill child, it goes to two and three. And I was like, right on. Thanks. Right. Yeah. And she said, You guys should probably go to therapy. And then like, she kicked us out of the room. It's going to be one of those things like your mama bear things not going to like it's not going to go away. Yeah, yeah. I had it. It's hard to get rid of. I've said some terrible things to my wife when she's gotten in the way of me managing Arden's blood sugar in the past. So especially after you've, you've been at it for a full day, with a to my daughter was two when she was diagnosed. You know, I can imagine, yeah, you got everything rolling along. And then somebody comes in the door with like, a sack full of crappy food. And you're like, what enough? Are you doing? Like, I just got this together? You know, I spent my whole day getting this blood sugar stable. I didn't know what I was doing back then. You know, so there's a whole day's worth of effort. And then somebody just walks in. They're like, Hey, it's me. I'm the seafood fairy. And you're like, No, I can't, I don't. And then they feel bad. Like they're not doing it on purpose. You know what I mean? Like, so? This doesn't happen anymore around here. But like I'm saying in the past long time ago, I know how much anxiety and turmoil it brings up. So I wish you luck. It sucks. And you're are you doing this on your lunch break? For me?

Emily 47:30
I am. Thank you. Actually, I usually have a pretty, pretty long lunch break, because I do dialysis rounds on my lunch break.

Scott Benner 47:37
Oh, geez. How did you get into this line of work? By the way,

Emily 47:41
I was an ER nurse for 12 years. And then I was a hospitalist for a couple of years as a nurse practitioner, and I got recruited by the nephrology group from the hospitalist work, you're likely to find it rewarding. I do I always swore as an ER nurse that I would never work with dialysis patients. But you know, never say never. So I actually enjoy it a lot. But the

Scott Benner 48:06
I guess you get to know people too, right? Because they do. Yeah, they repeat people home dialysis is that if I can ask couple questions about it. Yeah. Is it the same? Are you getting the same bang for your buck as you are if you go into a dialysis center,

Emily 48:20
and it's actually better, you can do it more often for less time. We can control not control things a little bit better, but you have less of the roller coaster building up of toxins pulling along while building up on the mountain. So home dialysis is actually the best option. And is that there's actually a huge push for it right now. But you know, just like with any other chronic medical condition, patients are scared to do things by themselves. So getting over that hump is

Scott Benner 48:52
difficult. Once you're on dialysis, is it? Is there a average amount of time you can make it without a new kidney? Or it could go on forever? Or does it vary?

Emily 49:03
I have some patients who have been on dialysis for more than 20 years, who will not get a kidney they don't qualify for a transplant or who you know, had a kidney. It lasted 10 years, and they've been on dialysis for 20 years. But then we've had some transplants who've lasted. I had an older lady, she was in her 90s. And I want to say her transplant had lasted over 30 years. Wow. Yeah, so admit, but it just takes diligent just like anything else, taking those meds, getting those follow ups, doing what you're told to do. And that's hard for so many people. It's

Scott Benner 49:38
not just diabetes or in other states. It's just getting people to do things. repetitiously is tough. Yeah. And isn't it true that once they start feeling better, they forget about the thing that made them feel better? Yeah.

Emily 49:48
Yeah, even notice that Yeah. And so many of them will say like, well, I didn't feel good today. So I didn't come to dialysis. And I'm like, But why do you think that would make you feel better?

Scott Benner 49:59
You didn't feel good today because you need to come to dialysis. Yeah,

Emily 50:03
like if you were, if you were sick gi related things, for instance, I can provide IV fluids and Zofran and things like that with dialysis, like I can help you out. I mean, if you can't get off the toilet, then I can't help you there. But there are a lot of things I can help with. Or I can always come look at you and say, All right, yes, we, you know, here's what we can fix about this sitting at home, I can't do any of that. So, but convincing people of that is so very difficult. It usually takes me I tell everybody, I need you to give me six months, because you're gonna feel worse before you feel better. Your body has to adjust to this. Usually, and it's always a battle, I always tell people, I'm not going to push you on it or encourage you to do it. Unless I have to.

Scott Benner 50:44
Everybody who gets dialysis, they end up with a fistula, right? Like a port somewhere.

Emily 50:50
A fistula or graft, I mean, some have a tunneled catheter, because they refuse or they, they've been doing it so long that they just don't have vascular access to do anything else. But of course, you can start with PD and peritoneal dialysis in the belly. But that does eventually burn out.

Scott Benner 51:06
What are the real life impacts of people who are on dialysis? Like, what are they going through day to day? You

Emily 51:12
know, depends on the type of dialysis and kind of what how rigid they are with what we tell them to do. I have one gentleman, he's been on it 20 Something years, he says, I feel great. I do everything you told me to do. Come to my dialysis, I never miss I feel great. I have no complaints whatsoever, comes to dialysis for hours, three times a week. And I have other ones who should be there three and a half hours three times a week. And they may show up once and they're in and out of the hospital nonstop. And it can be very frustrating. And I have some who gain two kilos between treatments, which is average and okay. And I have some who gained 10. And I'm like, do you understand how many pounds 10 kilos in three days? Like, what are you doing? You don't know what you're doing to your body? And it's, I call it 51st dates? Because I just say the same things over and over and over again.

Scott Benner 52:02
But what are they experiencing? Like privately like, what are they nauseous? Are they like, what do they go through when they're not?

Emily 52:11
Feeling? Well? You mean like before starting tile? So

Scott Benner 52:13
once you're on once you're on it? And if it's not, if it's if you're not doing the things you're supposed to be doing, you're not having an optimal experience, I guess? What are some of the things that are happening. So,

Emily 52:23
for instance, if you gain too much fluid, if we pull off a lot of fluid during the treatment, or more than what your body really can adjust to frequently you're going to be weak, you're going to be nauseous, you're going to be sleepy. So they're just like, Oh, I just sleep all the time. I don't have any energy. And I'm like, and some of that's usually when they start their Mnemic we have to get that kind of turned around. And the blood pressure tends to if they're sky high, and they have on five kilos or something ridiculous. We pull off five kilos, their blood pressure drops significantly. So they're hyper hypotensive all day and their diet can be limited. You know, they're on something called phosphor responders. And sometimes those calls gi upsets some constipation, some diarrhea and vomiting. So they have to take that with every meal. There's a hard existence. It can be Yeah, they can be it's just a lot that you have to consider. I mean, it's similar to type one diabetes is a lot that you have to consider in everything you do all day, they have their own food restrictions. They're not allowed to drink, really more than 32 ounces a day, which to me is a nightmare. I drink that in the first hour, I'm awake, I can't imagine and I try to give them empathy for that. Because I know I could not imagine being limited like that. It's hard for some people, for sure. It is yeah. And but at the same time, I'm like, All right. I mean, I can understand, you know, you had a thirsty day you were active. You know, you wanted you wanted to go that Super Bowl party, but at the same time. You've been doing this for five years, it's

Scott Benner 53:54
you knew what was gonna happen next. Yeah. You

Emily 53:57
knew you knew I'm gonna find out your Monday morning. So do

Scott Benner 54:01
most of them come from one disease state like, or is it a very, it's that I'm sure a lot of things, you know, can end with kidney failure. But do most of your patients come from like type two or? Most

Emily 54:12
of them are type two. Yeah. So type two, Hypertension is very common. A few in our area is different. For instance, there's a disease, polycystic kidney disease, and sometimes you see pockets of that, because it's very, it's genetic. And we have a pretty large population of that in our area. So we have a good many with that. And then lupus nephritis can be common for those who do not take care of their lupus early. The same with diabetes. Those are probably the most common. Do you

Scott Benner 54:44
think that people with type two as an example, know that they're there because of their type two? If I'm their provider, they do they understand? Do they understand that? There are there's more damage coming the kidneys there's just what they've seen so far, or is that a or Do people have that feeling of like, Oh, something finally broke? Now it's broke, nothing else is gonna go wrong? Do you know what I mean by that?

Emily 55:06
Yes. So I think it just depends on, you know how much education there have been provided with by the providers. Because for us, I was always taught that if, if the eyes are involved, the kidneys are involved. So even if they don't know they have eye damage, if they've got kidney damage, especially if we biopsy them and know it's coming from diabetes, we immediately are like, you're like your vision, you got to stay on top of this, because it's been affected. So sometimes they know, but I don't think they always grasp the reality of the full picture. And then kind of by the time, especially once they get to dialysis, you do kind of get out well, you know, here we are. Just like the last question. Yeah. And luckily, once you end up on dialysis, because your medications aren't rapidly filtered, or normally filtered, the problem is, a lot of times their blood sugar starts to get really controlled, as that kidney function starts to decline. And so then they get like, but my blood sugars are better. And I'm like, but you're at once he was 14 for three years, like they're better now, because the medicine is lasting longer.

Scott Benner 56:18
And what is better mean? 10?

Emily 56:21
Sometimes it'll even a once he's come to five, they'll go off their diabetes medicines. Really?

Scott Benner 56:25
That sounds Yeah, yeah. Wow. Any heart issues pop up afterwards? Usually? Oh,

Emily 56:31
yeah. Yeah. The correlation between heart disease and chronic kidney disease is it's close, right? Enormous. It's yeah. And then you'd get microvascular disease, especially because you have issues with calcium and microvascular disease from calcium buildup, and it's horrific, really, I mean, just dialysis itself. I mean, you know, you're pulling fluid from the body, and then it builds back up. You can just imagine kind of how it does that to the vessels, they all end up with heart failure, not all of them. But frequently, and that were heart failure. And,

Scott Benner 57:04
well, Emily, like I said, You're a party. This has been nothing but bad news. But I appreciate you doing this very much. Thank you. I hope people don't think it's a bummer. But it's good information. You you have it. So yeah, I appreciate you telling us the personal story. And then finishing off here with explaining some things from your professional perspective, too. Thank you. Yeah. And

Emily 57:22
I wanted to make other parents like, I want them to know that you know, even as to health care professionals, we probably missed the signs for a minute, you know, when it came to our son, and it's, it's very easy to beat yourself up about it, but you just do the best you can every day. Yeah.

Scott Benner 57:36
Now listen, I knew something was wrong with my daughter for a month and she still almost was in a coma by the time I got out of the hospital. So it's hard to see me it's happening in front of us so slowly, you just never put the pieces together, like fast enough. Yeah. And

Emily 57:50
I look at the picture. And I'm like, Ah, like the week before school picture his yearbook picture from this year. I'm just like, oh,

Unknown Speaker 57:58
I might not see this. Yeah, he doesn't matter.

Emily 58:00
Yeah,

Scott Benner 58:02
no, no, my I have a photo of Arden. I mean, she was too. So she's in a diaper running around like a hotel room. And I mean, she looks like Keith Richards in the middle of the 60s. And I don't know how, like, none of us noticed that. You could see her ribs and she look like she was on a heroin bender. Like No kidding. Yeah. You know. So anyway, don't don't beat yourselves up. It's, you know, you're past that now. So let it go. Yeah. All right. Well, Mike, thank you so much for doing this. Would you be able to hold on one second for me?

Unknown Speaker 58:30
Sure. No

Unknown Speaker 58:31
problem Thanks.

Scott Benner 58:39
Your kids mean everything to you, and you do anything for them, especially if they're at risk. So when it comes to type one diabetes, screen it like you mean it because if even just one person in your family has type one, your child is up to 15 times more likely to get it. But just one blood test can help you spot it early. So don't wait. Talk to your doctor about screening. Tap now or visit screened for type one.com To get more info and screen it like you mean it. If you'd like to wear the same insulin pump that Arden does, all you have to do is go to Omni pod.com/juicebox That's it. Head over now and get started today and you'll be wearing the same tubeless insulin pump that Arden has been wearing since she was four years old. If you were a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bowl beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CDC es a registered dietitian and a type one for over 35 years. And in the bowl beginning series Jenny and I are going to answer the questions that most people have after type one diabetes diagnosis. The series begins at episode 698 In your podcast player or you can go to juicebox podcast.com. on and click on bold beginnings in the menu. If you're not already subscribed or following in your favorite audio app, please take the time now to do that, it really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com