Scott Benner 12/23/24 Scott Benner 12/23/24

#1389 Spirit of 76

Terry has seen some things in his 76 years.

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

I'm speaking with Terry today. He's had type one diabetes for 50 years, and he's seen a lot about diabetes management come and go. He was diagnosed at 26 years old. He's 76 today, and his father also had type one diabetes. 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 you don't

Speaker 1 0:40
forget

Scott Benner 0:45
to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com if you're looking for community around type one diabetes, check out the Juicebox Podcast. Private Facebook group. Juicebox Podcast, type one diabetes, but everybody is welcome. Type one, type two, gestational loved ones. It doesn't matter to me if you're impacted by diabetes and you're looking for support, comfort or community. Check out Juicebox Podcast, type one diabetes on Facebook.

The episode you're about to enjoy was brought to you by Dexcom, the Dexcom g7 the same CGM that my daughter wears. You can learn more and get started today at my link, dexcom.com/juice, box. This episode of The Juicebox Podcast is sponsored by touched by type one. This is my favorite diabetes organization, and I'm just asking you to check them out at touch by type one.org. On Facebook and Instagram.

Terry 1:59
Hi. My name is Terry Wheelan, and I'm a type one diabetic. In June of this coming year, it'll be 50 years, and so I think that's a significant accomplishment, considering awesome, but I've got quite a quite a track record of experiences with type one all the way through the technology developments for over the years. Yeah, and I can talk about that forever, but I'll, I'll let you kind of chime in. Scott, how old were you when you were diagnosed? I was about 26 years old. Is

Scott Benner 2:38
this you telling me, Tara, you're 76 Yes. Wow, that's crazy.

Terry 2:42
Hey, good with the numbers?

Scott Benner 2:44
Well, yeah, wait, do you see? Do you see all the things I'm great at, while we're talking simple math is only one of them. So you're in your 20 Are you married by the time you're diagnosed? I

Terry 2:55
was, in fact, I was just recently married and had a less than a year old son, wow.

Scott Benner 3:03
Okay, so you recently married, had a new child. Was there any diabetes in your family?

Terry 3:09
There was my father had it. He got it at age 50, type one. And he was a he was a doctor. What kind of physician, pathologist? And he had his his own lab. It was in the Midwest, here in Iowa. I'm currently in Nebraska, so I had to drive from here, from Omaha to Cedar Rapids, Iowa, and that's about back then, 50 years ago. 55 was the speed limit, so that was about a five hour drive instead of a four hour drive like it is today, at a higher speed limit. And

Scott Benner 3:49
Terry people don't know that's a five hour drive with air rushing in through the doors and crazy noise and fighting with the car. Yeah,

Terry 3:57
exactly, exactly. And shocks were very good either banging

Scott Benner 4:03
around hard those hard rubber tires that not, not all the way back to hard rubber, but they still weren't as everything about driving sucked in the past. So much better.

Terry 4:12
That was not, it was not fun, but having a newborn baby driving all the way back there. Now I went back for one reason, and that was to have him in his laboratory, which he had a private lab, is to find out what was going on with my blood sugar. Because I had gone on a diet, and I was trying to lose about 20 pounds. Not that I was overweight, but I wanted to lose about 20 pounds. Well, I was on the diet, and I started losing weight, and of course, I was going to the bathroom all the time. I was always thirsty, hungry. I mean, I'm basically starving to death, as you well know what the symptoms are. From that standpoint, I. Knew that after a period of time, I started cheating on the diet, as we all do, and I was still losing weight. So then the red flag went off in my head, something is seriously wrong here. So I wanted to go back and get a blood test. At that

Scott Benner 5:16
point in your life, how long had your dad had type one?

Terry 5:20
He'd had it for about two or five, six years.

Scott Benner 5:24
You were maybe a college or gone already before he was diagnosed.

Terry 5:29
Yes, I was in college when he was diagnosed. Exactly right. And so anyway, we drove back and he tested, had me do a glucose tolerance test back then. Why? Why they would do that with a suspected type one diabetic. I don't know, because you drink a real sugary drink in order to test that, but anyway, I came back with a blood sugar close to 800 Okay, so why I wasn't semi comb toast at that point? I don't know. Now, he was kind of a hands off kind of dad, and he was not a very good diabetic himself. A lot of doctors aren't that are type ones. There's a few exceptions with the decoy, the doctors are pretty good. He told me that when I go back, my five hour drive back with a baby and a new baby and a wife that I should find a doctor and get treated for type one diabetes instead of giving me a shot of insulin, which she could have done very easily. He didn't. I don't know why. To this day, I can't answer that he's long since passed, I was driving back in a semi com So state, as I recall, I know I had to stop at every rest stop along the way, on the way back to because of the frequent urination and the thirst. But anyway, I made it back, and at that particular time it was urine test strips, the needle, the disposable needles had just come out probably six to eight months after I was diagnosed. I don't know the exact date, but somewhere around there. So prior to that, he showed me how to boil needles in a metal pan. And of course, that just all you're doing is taking the needle and banging it against the side of the metal pan to dull it a little bit. So it felt even worse when you tried to do it dull and clean. Yeah, dull and clean, that's for sure. And it was, you know, those disposable syringes when they came out was great. And then they actually had blood strips that you could prick your finger with, which I thought was really a lot of fun. So now, now I had two ways to penetrate my skin and cause pain. Yeah, and I thought this was maybe not something I'm really gonna like going forward,

Scott Benner 8:03
right, right? It might seem too that if he wasn't great at managing for himself, and listen, I mean, 50 years ago, you're describing what diabetes was. 50 years ago, there wasn't a ton that you can really do for yourself. You follow the rules. So even if he was doing that, I'm imagining he might have looked at you and thought, I don't really even know what to do for him, like he might not have even have known what to do for himself. You know what I mean, he did.

Terry 8:26
He didn't. He wound up he was, you know, I told you, a pathologist, and he did autopsies for small hospitals around where he lived. So he was always driving different places on top of trying to run his lab, he wound up in the ditch two to three times a month. He got so low he semi passed out. I don't know why he didn't kill himself trying to drive around in that condition, but you know, he wasn't good about testing. And he'd take a shot in the morning. Think he was going to be good for the day. Well, back then, the insulin that you would use was beef, pork insulin. They didn't have any recumbent like we do today, didn't have long acting or short acting or anything. It was just beef, pork insulin. Well, you know, to fill a vial of insulin like you have today, it would take a pile of pagan cow pancreases about two and a half feet tall and about three feet in diameter just to make one vial, to make a little one vial. Yeah. So it was very, very unstable when I used it, because I had no other choice, I used my thigh to give myself a shot. And if you'd look at me and look like I went to a golf range and got hit with 100 golf balls, because it would lead an indentation that looked about. Size and would attribute about the size of a golf ball. Now, since I got off of that, not using it, that went away, which was nice. It was not a very stable insulin. It kept you alive. Basically, that was about it, yeah. And of course, the blood, the blood test strips back then were about as reliable as the urine strips were. You didn't get a real good sense early on with some of those, like we do today, they weren't as sensitive to the chemical makeup of the strip to read it correctly.

Scott Benner 10:34
What were your goals? Like, what were you trying to accomplish day to day? And what were you trying to see that you were doing at doctors visits. You know what I mean, like, what were your hopes for your outcomes? Dexcom g7 offers an easier way to manage diabetes without finger sticks. It is a simple CGM system that delivers real time glucose numbers to your smartphone, your smart watch, and it effortlessly allows you to see your glucose levels and where they're headed. My daughter is wearing a Dexcom g7 right now, and I can't recommend it enough, whether you have commercial insurance, Medicare coverage or no CGM coverage at all, Dexcom can help you. Go to my link, dexcom.com/juicebox, and look for that button that says, Get a free benefits check. That'll get you going with Dexcom when you're there, check out the Dexcom clarity app or the follow. Did you know that people can follow your Dexcom up to 10 people can follow you. Right now I'm following my daughter, but my wife is also following her. Her roommates at school are following her, so I guess Arden's being followed right now by five people who are concerned for her health and welfare, and you can do the same thing, school nurses, your neighbor, people in your family, everyone can have access to that information if you want them to have it, or if you're an adult and you don't want anyone to know, you don't have to share with anybody. It's completely up to you. Dexcom.com/juice, box. Links in the show notes, links at Juicebox podcast.com, and when you use my link to learn about Dexcom, you're supporting the podcast.

Terry 12:09
I can answer that. First of all, you didn't know that you wanted to go to an endocrinologist. You know that diabetic type one you went to your family doctor, a GP. That's what they called them back then, general practitioner. Now they're internal medicine doctors, and nothing against them. They they learn the basics about diabetes and how to treat it when they go through med school. You know, for the most part, territory managers, or a lot of the pump companies and CGM companies don't go to visit internal medicine doctors, or they don't have the time. There's a lot of them out there. A lot of people stay with their internal medicine doctors, and they don't find out about all the latest, the current technologies and the techniques for treating diabetes. Mine was to try and get control of something that I knew very little about. There was very little information. JDF, juvenile diabetes Foundation had just started in 1970 while you're talking about 1975 no material out there to read. We didn't have, of course, the internet, cell phones, those kind of conveniences that we have today. So it made it really tough. You want to go to the library, you might be able to find some material dated back 1959 copyright, and that's what you'd get to read. So you were really kind of on your own. And to even, I think the only goal I had was to try to stay alive. Yeah, and, you know, it just, it was so much different now than what you and I are used to today. Right

Scott Benner 13:52
in present time, people are starting to talk about, they've been talking about time and range for a few years now, but now I'm here hearing them want to talk about time in tight range, meaning, I think 70 to 140 is what their what their goal is that we've been doing that with my daughter forever, but like now, it's going to start getting spoken about that way, which is exciting, because it kind of forces everything to to aim for that target, technology, you know, and everything else. So, I mean, you started beef and pork and, you know, with all the downfalls that it had, except for the one where it kept you alive. But then the next move is to, what is it? Mph and regular? Next mph

Terry 14:29
and regular. Okay, yeah, those were the two big inventions. Do

Scott Benner 14:33
you have a feeling for how long you were on beef and pork before you got to that

Terry 14:37
the beef and pork were probably three to five years, something like that. So

Scott Benner 14:41
you're still in your 20s, and you move over to these other insulins. Do you remember what the shift felt like, management wise? Did you What did you have to do differently? What did it bring to you? Well,

Terry 14:52
you wound up having more lows because the insulin would act predictably faster than. And the beef pork, that was one of the big problems. I bet I spent at least three to four times a month in the emergency room because of a hyper or hyper glucose unawareness event. You test your blood maybe once or twice a day at the most. Well, you know that's a point in time, and 30 minutes later you can either you might test your blood you're 120, and 30 minutes later because you're taking a test, or you're, you know, speaking in front of a big public audience, or something like that, and you get ramped up all of a sudden, you're 260, or 270 Yeah, or 300 you know, you didn't test your blood sugar and understand your blood sugar and what it was doing and what a piece of bread, white bread, would do. Back then, they used to say, if you had a low take a piece of white wonder bread and eat it. But that would bring your blood sugar up and it would, yeah, not as quickly as we'd like to have it, but,

Scott Benner 16:02
you know, it makes such a good point. And I had an experience with my daughter the other day. She's away at college. She just lost her CGM signal for, I don't know, an hour, right? But she's on an algorithm, right? So the algorithm is talking to the CGM and, you know, etc, so in that hour, it happens to fall. It's just crazy how it went. She went out to lunch and had pasta, and her blood sugar was doing great for, you know, an hour, and then suddenly she just loses her CGM, and so the algorithm doesn't have access to it for 90 minutes, till it comes back. And in that 90 minutes, her blood sugar went from like 95 to 320 because the algorithm wasn't, it wasn't like, oh, I should push, I should give more. And that was probably happening to you constantly, all

Terry 16:46
the time, yeah, all the time, right? And, you know, as a result, then I wound up with, to make a long story short, literally, a few 1000 laser treatments in both eyes because I was bleeding so bad from, you know, extreme highs, extreme lows, very unregulated blood sugars. In fact, I even wound up later on, having to have a vectrectomy, where they have five needles. They put in your eye, drain all the fluid out of your variety, get all of the bloaters out of there so that you can see and you don't go blind. Well, I had a good retinologist who literally stayed my sight. And it was, No, it is a tussle, but you'd go in for these into the emergency room, and you'd be in there all day long. Yeah, you know to try to regulate, either get your blood sugar up or get it down. I had an episode when I was helping to paint somebody's house, and it was chilly out, and I got home a little late, later in the evening in the summer, and I had to lay down on the bed. I just felt terrible. And pretty soon I started convulsing. And my son, who was at the time, about no he was probably 12, came in and laid on top of me to keep me from convulsing badly. We called the rescue squad. By the time they got there, my wife, at that while I was remarried, at that time, got divorced and remarried, and my current wife, who helped me immensely, knew a little bit about diabetes, or was making herself familiar with it, so she knew what to do, as far as trying to get a juice in me. But blood sugar wasn't coming up. It wasn't coming up. This was reasons why, you know, we had to go in, into the hospital so frequently to get it going. But I mean, you know, had episodes like that which were very unsettling, so

Scott Benner 18:47
you have a lot of hindsight. So let me ask you this question, because how do you manage today? What do you use?

Terry 18:52
I use the Medtronic 780 G and the G Force Sensor. Okay,

Scott Benner 18:58
and what kind of insulin I use, well,

Terry 19:01
I'm not supposed to tell you this, but I use fi asked, Oh, yeah, I love FIAs, yeah. I know it's the FDA has approved it for all the pumps FIAs, but the individual pump companies want to approve their own, you know, do their own. And I understand my

Scott Benner 19:19
daughter has been using a Pedra in an Omnipod for like, 10 years. So I don't think that's a thing you're supposed to do either, but works great. So okay, so you have fast acting insulin using 780 G. You have your sensor, so you know what it's like to manage now. And give me a tiny bit of context so I can ask my question, what's your range like today? What's your a 1c

Terry 19:40
my a 1c which I don't pay much attention to anymore because of I've got a niece who's a poster child for a very bad diabetic, and he winds up with an A 1c that's maybe, you know, seven or eight, which isn't horrible, no, but not like you'd you. You'd like to have it better than that. But, I mean, she skyrockets all over the place, extreme highs, extreme lows. Well, the average, you know, numerically speaking, the average is going to come out, you know, somewhat better than it really is. Yeah, I average now between 87 and 92% time and range, okay, what range do you keep? Try to keep 180 to 70. Okay,

Scott Benner 20:22
and what's up was that give you like a six two, a one

Terry 20:26
say, probably yes, 162, somewhere. Okay.

Scott Benner 20:30
So my point is, is you know how to accomplish this with with current technology, when you look back on regular and mph, and even your statement about your dad wasn't able to, like, really, they didn't test, you said, and, like, that kind of stuff. Was there really any way to manage back then that would have been any better? Like, what didn't you know then that? Now you can say, Oh, if I had just done this, this all would have been or does that not exist? No, I

Terry 20:54
think you've got a valid point there, because if I would have had the understanding of the impact, like that. Example I used, if my test my blood sugar, it's 120 and all of a sudden, you call me with real exciting news on something, and my blood sugar starts to shoot up. I would know that if I'm getting ramped up about something, or even if I'm just thinking about something, that kind of gets the heart rate going that I would go out and test what I didn't do back then, like I did before I transitioned over to the pump and the sensor, I tested 12 to 15 times a day. Okay, yep. I mean, the end of my fingers, I couldn't even, I didn't even have any sensation in them anymore, because I poked them all so many times here. I mean, I was using my thumbs and thought about using my forearm and stuff like that for blood tests, but I was really trying to manage it once I kind of learned what I could do and what impacted it, because it was more information available as time went on. Ada, yeah. Ada started putting out stuff. JDRF started putting out information, and pretty soon it was in layman's terms. So you, when you talk to a doctor, you know, sometimes you get the medical terms, and you go out of there and you feel like a deer in the headlights as far as or I drank from a fire hose. What did I just learn? Well, how can I apply that? Well, early on, the doctor's offices didn't have any helpful monitor people that could help you stage it. You know the dietitians and trainers for you know how to manage and how to do what you do every day. Yeah, you know the doctors didn't do that. They've got their 15 minutes of fame that you're in there with, and if you get 15 minutes, that's a long visit, as you well know the doctor. So that would have helped tremendously had I known a lot of that stuff. And once I started to learn it, then that's when it started to pick up.

Scott Benner 23:01
And you needed those data points, so you tested. So I did the same thing. My daughter's 20 Terry, she was diagnosed when she was two, so she's had diabetes like, 18 years now, and in the beginning, I mean, we were just, you know, insulin with, uh, with a syringe and, like, a little meter. That's where she started, basically, lever mirror and Novolog. And, you know, hurry once he was in the high eights, the nines. When she was first diagnosed, we didn't know what to do. We were following what we thought were directions. By six months in, she had a seizure because we gave her too much insulin for food or something or time to I don't know what I did back then. I didn't know what I was doing. You know, then you start learning a little more and learning a little more. And then suddenly I was like, I need to test to know what's going on. And I remember the first time that I told her nurse practitioner. Her nurse practitioner said, Why did you like this test here? Her blood sugar was like, 300 something. She's like little three, four years old, you know? And she goes, When is this? I said it was an hour after she ate. And she goes, Well, why would you test her an hour after she ate? You know, she's going to be high. And I went, I don't know that. I'm like, I'm trying to figure out what happened so I can stop it. Like, I think I could stop it, you know? And I remember even then, and this is only, like, 14 years ago in a metropolitan area, at a good hospital, you know, the whole thing where she's like, don't test then just wait till later, it'll go back down. Great. Thanks. But I would test her a ton so that I could get these I almost was making a CGM graph, you know what I mean, with the little data points, trying to figure it out. But you were doing that a long time ago. Before that, I

Terry 24:37
was trying to I didn't realize what I was trying to do, but I was trying to figure something out, because obviously everything I was doing wasn't working. Yeah,

Scott Benner 24:46
yeah, okay, so regular and mph, you're still injecting that. I guess the next step is you get a pump along the way somewhere, right?

Terry 24:55
I got that about 2728 Years ago from the doctor I had was an endocrinologist, and she said, You are going on an insulin pump and sensor. And I said, Okay, I helped start the chapter of JDRF here in Omaha, and started the gala and the the chapter here and in Lincoln Nebraska, and we had a guy who was as fit as any track star you'd ever know, but he was a type one, and he said, I don't want that ball and chain hanging on me now. That stuck with me for a while. Okay, so I kind of resisted the ball and chain concept in my mind, even though it never turned out to be that way once I got it. But my doctor said, if you want to continue to live, you got to have this. And so my very first experience with a sensor was I started with Medtronic, and I've been with them the whole time. Was a sensor that inserted it a 45 degree angle. Okay, I had, after I met with the doctor, we got, we had the sensor, and I was with a brain school pharmacist, especially in diabetes care. Very nice gal. Didn't know a damn thing about the sensors. Okay, we were going to put it on my abdominal area. And I said, Okay, great, loaded. We shot the put the sensor in, and got everything taped up, and I went home. God, this thing is uncomfortable. I thought it was supposed to be. Wasn't uncomfortable. You wouldn't feel it, other than if you touched it on your skin, it hurt even touch the thing. And I thought, What's wrong as a last resort, like we do with everything that we try to put together or learn about, we read the instructions. Okay, so I pulled the manual out, and I started looking at it, and it said, you have to take the needle out. Oh, she left it in. She left

Scott Benner 27:11
did her then,

Terry 27:12
yeah, oh, my goodness, it's a good thing. I caught that. So anyway, I still see her periodically a diabetic events around town here, and I always joke. She says, How's your stomach just

Scott Benner 27:26
grabbed my side when I saw her. It's you. I have a bad feeling. Yeah. Are you using the guardian for now? Are you looking forward to the newer CGMS that are coming from Medtronic in the future

Terry 27:38
sim, pleura, sync, yeah. Do you? Yeah, that's that's out in Europe, has been for a year, and yes, that's going to be phenomenal, because it takes away your wait time or to calibrate, okay, you know, for the two hour calibration, you don't have to charge it. It's got its own transmitter and sensor all combined in one on a server that you just pop it on. The way you go all done, yeah, you know. So that's yeah, that's going to be great. But the g4 is phenomenal, because I think I told you at one time, I went through the clinical trial with the 780 G and the g4 and this is when we were trying to test it. Now, part what you just said a little earlier about knowing the impact of a meal, when you have a meal, or certain meals, what can happen. And with this testing that I did in the clinical trial, and we had it at several different set points, 101, 10, 120, but anyway, I tried it at the 100 and I had to eat a meal, and it was a hamburger, french fries, ketchup, a beverage, non sugar beverage. I just had an iced tea, a salad, and then a dessert, and it came up to about 75 to 80 carbs for that meal, and they did not want me to Bolus, or anything other than if I hit 300 then I would start bolusing, how the pump would react, how it would do what it did, sure at all three set points, having the very same meal, and I had to do it a couple of different times. I never got over 254 without even bolusing, without even Bolus Yeah, no. And I have pretty crazy I will tell you right now with that system. And I tout it because I played with it and experimented with it, that there are a lot of meals, I mean, a lot of them that I eat, of course, I eat a little less than I used to, just because my age, I'm not that hungry. Yeah, you know, I don't eat three hamburgers. I eat one, you know, kind of thing. And there's a lot of meals I don't Bolus on purpose. I look about an hour or two. Later, and it may have bumped up maybe to 200 No, it's interesting

Scott Benner 30:03
to hear your your long term perspective. Because, I mean, I've seen my daughter do the same thing, like, you know, She'll miss a Bolus or something like that, and she'll climb 200 and come back down again. And I know for a lot of people, they're like, oh, I don't want to be that high, and I absolutely support you not being was so just, like, interesting, just how casual you were like, Oh, you went up to, like, 250 and it came 50 and it came back down. That's amazing, isn't it? And I thought, like, You're amazed by that, because you have context from 50 years, you know, where that situation before could have made your blood sugar 700 and put you in the hospital? Yeah,

Terry 30:36
exactly, exactly. That's really something to me. This is the fourth iteration of the artificial pancreas project, actually, JDRF, I know that it's break through T 1d is our new name, but JDRF, back then, started this 18 years ago, sure. And they got all the pump companies and CGM companies together, sat them down at a table with the FDA, which I don't call the Food and Drug Administration, I call them the federal delay agency.

Scott Benner 31:06
Takes a while sometimes, doesn't it? Yeah.

Terry 31:09
Anyway, they sat down and they said, What does an artificial pancreas look like? And they gave them the minimum requirements from the FDA perspective, and everybody went off. And all this competition has us right now. This is the fourth iteration of the artificial pancreas, and I think the next iteration that Medtronic coming out with. Now, I don't know about tandem and an Omnipod, and those guys are all going to have their own version. We're in an age where we've got an artificial pancreas just about complete. Now, it's not a biological cure, but it's theoretically a technological cure, yeah,

Scott Benner 31:48
and for a person who had 1000s of injections in their eyes, I would imagine that seems like pretty awesome to you. What else happened to you in that span of time, besides your eyes?

Terry 31:58
Well, I had gastroparesis and gastroparesis is where it affects the main vagus nerve that runs down the center of the body. It controls respiration, somewhat of the heart rate, motility, digestion, and when you get that, you have explosive vomiting and diarrhea at the same time you get hospitalized. I was in there for three days before they could get that under control, and that's because of the the highs and the lows just going, Yeah, completely berserk. And you were in the bathroom, you didn't know whether to stand up or sit down. I mean, it was, and sometimes you had a bucket here and you were sitting there, because it got that bad. And of course, when you think of respirations are controlled by that vagus nerve, yeah, and all of a sudden you're doing enough damage to it that you don't have the motility of things moving through. That's kind of scary. And then it impacted, course, my site. Obviously, I'm I've got problems with my site right now because of the first 20 years, but after I got on the CGM and this pump for almost 30 years, I had no treatment for any diabetic related condition period, yeah.

Scott Benner 33:22
So you think now what's happening to you now is more a function of age and prior damage, but exactly, exactly once you found that that. Listen, I've had a lot of people on talk about stuff like that. There's a guy that came on one time, lovely guy named Mike. He's in a, I mean, he might be in an episode called complications, are complicated, or something like that. But he, you know, he grew up through a time like you're just, you know, describing. And he said that by the time he found the podcast like his, his site was really waning, and it actually got better, like it improved, and then it reverted, and it got better. I mean, didn't go back to, you know, like when he was, you know, two years old, or anything like that, but, but he had a real significant improvement. I asked him why, and he's like, I learned how to use insulin from you, and now my blood sugars are stable, and they don't bounce around all the time, and they're lower more than they're high. And that's that, you know, so, yeah, it's a little sad that it took that many decades for people to figure it out, and you're still involved in the community. So, you know, there's still, it's a coin flip. Whether you get a good doctor or not to manage your diabetes, you don't know who you're going to get right. Like, and you could easily get somebody who says, still, like, Oh, it went up to 200 after a meal. It's fine. Did it come back down on its own? Then it's okay. You know, you can still get that advice today. I do these conversations with people like you, hoping that doctors will hear it and think I should maybe put some more effort into figuring out how all this works so I can explain it better, so that, you know, I'm not talking to somebody today who, 30 years from now, is going to need to have the fluid drained out of their eyes to get rid of their float. Like,

Terry 34:54
you know what I mean? Like, yeah, exactly, yeah. That shouldn't happen to anybody going for. Forward. Now, part of that, I can just dovetail on what you've been saying. There are you

Scott Benner 35:04
starting to see patterns, but you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure, once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025

Terry 35:47
going to an internal medicine doctor is fine, as long as you're willing to pursue on your own some of the technologies that are out there, or ask the Doctor about the technologies, because they don't get the visits like the endocrinologists do with from the sales reps, territory managers, whatever you want to call them, for the companies that are developing this technology. And it's going fast, as you well know, it really moves out there. But one of the things that I'm doing. I'm president of the cosmopolitan club here in Omaha, one of them, and we raise money. Our club raises money for scholarships for kids to go to diabetic camps. There's two of them here in Omaha for at different ages, and we raise money for that. But I'm getting this club involved in creating a brochure that says, Why do I need a CGM, and what the hell is it? And those we're going to go to every internal medicine doctor in the metropolitan area and make sure they've got those on their desk, make sure that they pass those out to their that I'm going to list the companies that make them and say, if you're a type one or you're a type two and you're using insulin, then you better have a CGM on. There's no reason not to, because those companies have programs for people that can't afford it, Medicare and Medicaid cover them right now, or if they're on Medicaid or Medicare, like I am now, because I was one of several advocates that we did advocacy work in Congress for five years to try to get Medicare and Medicaid to cover CGM. And I mean, I could tell you all kinds of statistics and war stories on that, but we'll leave that for a different day. Maybe

Scott Benner 37:44
I keep thinking that you're still involved in all this, probably because of the impact that just Ada and JDRF putting any information out meant to you when you were younger, like there was finally something to try to figure out, and you're just trying to continue to do the same thing for people. Is that

Terry 38:02
right? Exactly? I'll do it any way I can. In fact, sometimes if someone like yourself or myself sit down with somebody across the table and talk to them about it, having the experience of having a loved one with diabetes and or having it yourself, you're a much better representative, per se, than the sales reps, because the minute they find out they're a sales rep, then, you know, the hair goes up on the back of your neck and you're waiting to say no, if they'd shut up long enough to listen to you, if they hear it from me, I have no skin in the game other than I want them to get the best possible care so they don't have to go through what I went through. Yeah,

Scott Benner 38:44
yeah, no, because, and it's beyond your, you know, your physical health too. I imagine that diabetes has had implications in your personal life, and, you know, probably your jobs and all the I mean, your blood sugars are bouncing around. You're in the hospital. You know, your dad's driving into a ditch. I, by the way, I figured it out earlier. Was your dad born in 1918,

Terry 39:05
yeah? I think, no, it might have been a couple years earlier, a couple years older than that. I'd have been 16, yeah,

Scott Benner 39:10
because you said, like, he wasn't a very involved dad. And I thought, I wonder when he was born, and when I just tried to figure it out my head, I was like, yeah, it's that was probably like some warm, loving having him drive out to the you driving out to the lab and him going, you have diabetes? Like, uh, having a yeah, oh, yeah. Father, Son moment.

Terry 39:28
He was born right about the time that they started in Canada, started researching, trying to figure out what caused diabetes, because that was called the sugar disease back years ago, yeah, and when you had the sugar disease, you could not eat any carbs at all. Period. That's the only way they treated it. Tell Dr Banting. Frederick Banting discovered it in 1919 I believe. And then in 1921 22 he had perfect. Did it enough to do the beef, pork insulin. That's when Eli, Eli Lilly came in and started backing him up, yeah, funding him so he could get insulin on the market. It's

Scott Benner 40:10
pretty, it's pretty great moment for everybody. That's for sure. I, you know, my daughter's said to me before, she's like, you know, I was born at a certain time. I just would have died when I was two. I was like, and that's hard thing to know your whole life. You know that that something like that could be how many children did you end up having, and did any of them get diabetes?

Terry 40:27
No, I had two boys, and neither one of them, thank God, or none of my five grandchildren have it. So I'm keeping my fingers crossed that none of them get to the age of 26 and all of a sudden discover, yeah, that. You know, of course, if you're going to get diabetes, Scott, this is the best time to get it right now, with the technology that's available, if you put a CGM on and even even do a borderline trying to control it or manage it, you won't have any of the complications that I had to go through, I was

Scott Benner 41:01
gonna say, be a million miles ahead of where you are at that age. Yeah, you brought it up earlier. Like, where does this go from here? Like you said, you know, Medtronic got another sensor coming in America. All these other companies are, they're in this battle, which I agree with you. I heard you say it earlier. I like that they're competitive, because I think it keeps them moving. I do wonder if there's going to be another sit down at some point where maybe the next thing that an, you know, an outside entity says to manufacturers is like, Okay, we figured this out. Like, now, how do we get this better? Like, right? How do, how do we make this algorithm more, you know, aggressive when it needs to be, not when it doesn't need to be. Like, keep innovating this thing. Because you don't know where this could be. You know,

Terry 41:41
when I was in on the clinical trial, they asked me to sit in for the diabetes technology society. I'd never heard of it before, and these are scientists and technoids from all over the world that sit on this while I was on the call for 13 hours, and they did it for four days, and they talked about it, and some of the Technos had talked about the stuff that they've got coming out, or that they've perfected, and their weight. They're going through clinical trials now, one of them that I was really excited about, it's just going to be an app that's going to be on the phone. I don't know if this is going to be Medtronic or omnipot or tandem, whoever's going to get it, because these technoids, University of Virginia is in Charlottesville, had the guy that's in charge there of that department is really an innovator in this air, in this area, and what it is, it's An app that you go out to eat, let's say at Burger King. I'm just going to use an example. Go out to eat and you have a burger and fries and a drink, and I don't know, some kind of dessert or something like that, in front of you. You look at it, how do you know what how many carbs are? They can tell you the calories, but they can't tell you the carbs. Well, you touch this app, and it'll automatically come up on your camera, and it'll look at it, and it will give you an estimation of the carbs of that meal. And it says you can either take this or you can up up your Bolus. Let's say it said 50 carbs. You could up it 50 carbs, and have it do the calculation, like it does now for whatever your insulin to carb ratio is, or you could lower it, whatever, just based on what you think. As we're creatures of habit. We have a tendency we go back and have the same thing again, if we liked it. Well, if you come back, it's going to say, Okay. The last time you had this, you went low, because you exercise, and you didn't tell me, so you got to put in, yeah, I'm going to go exercise. So put it on a temp target. I went out and exercise, so I took lower insulin, and it will keep track of that every time you go back and have that same meal or something similar to it. Yeah. So, I mean, that's a huge break, because people even to this day, I miss judge on carb count, sure, for some things that I look at and every diabetic does day in and day out, you're going to miss, miscalculate, say, Well, the last time I had that, I went real high. So I'm going to give it a little bit more. Well, there was a reason why you went high, because you did something else that you don't remember. Where this app can keep track of that. Yeah, and all you have to do is just enter some little code in there to say, I exercised or I went home and slept and ate popcorn.

Scott Benner 44:35
I don't think we're that far away from AI based technology helping you with this stuff too, like seeing what your settings are and seeing what your outcomes have been, and making suggestions to you about what maybe you could move settings to to help you. And I don't think we're far from that at all, honestly. So because

Terry 44:54
the Medtronic comp right now has has had AI in it for about five years, and. And they put some real sophisticated algorithms in, because it's got this meal detection technology. And when I sit down and I start moving my my hand to my face, like that, the pump can detect somehow that kind of motion. Now I know they have thing that's like a Fitbit that you wear on your hand, and if you use it on the hand that you eat all the time with that will automatically kick in the pump to know that you're eating and pay attention. It'll either buzz you to say, don't you want to give a Bolus, or what are you eating that you maybe shouldn't, or you just have popcorn, or something like that.

Scott Benner 45:41
That sounds awesome. I had a guy on once that was talking about, you know, just how the implications of, as an example, like different pizza joints are like, right? Like two slices at one place might hit you differently than two slices at another place, and that our phones now know where we are all the time. So, you know, you go out and you tell them having pizza, and it knows you're at Pizza Hut, and then you go to another place and have pizza, and it knows you're at a different place, and it can, like, kind of say to you, like, the idea is that it would be able to tell you at some point, hey, don't forget, we're at Pizza Hut right now, and that takes 25% more insulin than the pizza over here, or something like that. Like, right like, I mean, that doesn't exist right now, but that's not crazy to have, you know, like little things like that. So I want people thinking about those things and ways to win them. Yeah, yeah,

Terry 46:29
they really are. I think some of the stuff that's going to come out in the next 18 months is going to blow our mind. Yeah, I'm excited, because a lot of it these companies can't say ahead of time before they go to the FDA all the stuff they're doing, yeah? Well, yeah, once they've got it in the FDA for review, then they can say, Okay, this is what we submitted to the FDA. That may not be the final thing, once it's approved, right? It may be a little different, you know? So hopefully better the FDA is paying attention. There

Scott Benner 47:02
are companies designing more stable glucagons to be in, like, dual hormone pumps, you know, like, that kind of stuff is all like, I mean, imagine that, you know, you start getting a little low, and it just kind of bumps you back up, and you don't even know what ever happened. That's right, yeah. I mean, that kind of stuff is that

Terry 47:18
that's kind of, kind of here now. With beta bionics, they came out with their new pump, and it's again, where you don't interact. I've never worn it, so I'm just speaking from people that have had it. Very few people right now have it, but more will. You don't have to do anything with it. So I but it doesn't have the dual hormone, no,

Scott Benner 47:41
but yeah. But they did just enter into an agreement with uh zerist to for zeros to design one for their pump. So, like, I don't know, it probably take years, but, like, that kind of stuff is, like, that stuff's exciting to me, you know, very, very and having you on to talk about your your entire history with diabetes. And to really put it into context, I think it makes this stuff even more exciting, because it could be, you know, for somebody who was diagnosed last year, this isn't exciting to them. They just want to know why it's not here yet. Like, you know, we live in a cell phone culture now where, you know, like, things get changed pretty quickly. But to hear your perspective, I think is valuable. Like, this must seem like magic to you on some level.

Terry 48:22
Oh, it does. I never thought I would live long enough to see what I'm experiencing right now, really, on all the all the CGM, some pump companies,

Scott Benner 48:31
why did you think you wouldn't live this long? And why do you think you're alive? I didn't

Terry 48:35
think I'd ever see this kind of development, because how long it would take. You know, we never heard of AI years ago. You know, we didn't even know about the internet, you know, back then. So all of a sudden, all of this stuff starts to come together. Now we're drinking information from a fire hose. So then all of a sudden, I'm just, I'm overwhelmed with all the information that's out there, and that's exciting to me that we've got that available now, but back then, I didn't see that light at the end of the tunnel. I mean, it really you just, you didn't look at it. You just were trying to manage yourself from day to day, and you felt defeated every time you went into a doctor's office, if you kept track, and I tried to keep track of my blood sugar readings, and they were always terrible. Every time I took a blood sugar reading, I managed to take it all at the wrong time, I'm sure, an hour after I ate. And it's up to, you know, almost 300 and I'd write that down, well, you'd go in there, and it was you were going to be judged on your A, 1c, and whatever you kept track of that way. And that was frustrating, as all get out, because you felt like a failure. Because I like getting grades in school, you know, I didn't get all A's and B's or one's and two's, you know, I made. Hit three. I made a couple F's in there, you know, or a five. And so I think that was kind of the way doctors didn't try to do it on purpose. That's the way they made you feel that they didn't gloat about all the good things that you did, because they were pretty minimal, but they certainly focused on the things you screwed up, yeah, and you didn't do or what you should do so that to have this come out like this. And my efforts of testing 12 to 15 times a day before I got a CGM finally, and a pump, you know? And I could say, Oh, my God, look at that. I can tell what I'm doing wrong. And when I tested and, you know, geez, I was doing damn near everything wrong,

Scott Benner 50:44
and you're willing to put the effort in, you just didn't know where to put it. Yeah, exactly, yeah. My daughter, like I said, she's in college now. She does a great job for herself, but the college food is tough. Oh, I'm sure not the greatest food. It takes more insulin. Like, I listen to a lot of people's stories. I've heard 1000s of people on this podcast, right? So I hear adults come back and tell their stories about college. For example, there's, I didn't Bolus for days for my meals. I'd only put in my basal insulin. Like, you'll hear all kinds of stories from people. My daughter, she Bolus every time. Great. Like, my biggest argument with her is, like, she doesn't, like, you know, sometimes I wish she pre bowled a little longer, and I do wish that she would look up after the meal, like an hour later. Like, that's a thing, I guess I was doing that she wasn't doing, right. But we're working on it. We're not. Nobody's panicking, right? Like, nobody's like, like, oh, nobody's hair is on fire. Like, she's doing a great job. She's gonna keep like, a six and a half a 1c at college on her own, which is unbelievable, insane, right? It's so great, yeah, but I do want her to look up an hour after she eats and just reassess and like and that kind of stuff. So we just, we go about it very slowly. We're trying to keep our relation. We don't want to push her away. We don't want her to get to the point because, I mean, she's gonna just one day be like, Listen, I don't need your help, but she does. She needs someone's help. Still, trust me, you could use somebody. You're 76 you could use somebody's help. You know what? I mean, like, we everybody could use the sounding board, and so we're just going at it very slowly and not panicking. I think that's why I liked it so much. When you said, like, oh, it goes up to 250 in it, you know the algorithm, like, knocked it back down again. You said it kind of casually, because that's the attitude that I'm adopting right now while I'm speaking to my daughter while she's at college, a little bit of like, you know, not a sprint, definitely a marathon, you know, we'll work at this slowly. A couple of months of blood sugars jumping up higher than they used to at meals is not a big deal, as long as long as it doesn't continue in that direction. That's how we're thinking about

Terry 52:43
and then the technology that we have, having her on the phone, having the ability to look at your blood sugar readings on a watch. I like it, because if I'm driving, I can just tap my watch and I can see what my blood sugar is, in case it, you know, starts drop. I mean, it'll warn me, warns me on my watch, on my phone, on my pump, right? So I have no excuse for not doing it. I always carry 20 or 12 ounce Gatorade with me. I always have them in the car. I always have them. Whenever I go anywhere, you drink one of those, and it'll take you out of a low without raising you up too high above probably 130 bounce on the work 4040,

Scott Benner 53:22
and you make sure. So tell me why. I mean, I think I know why, but I want to hear it in your words. Like you're very much on top of your diabetes, right? And you have been for quite some time, because there are plenty of people who have all that information, and they just ignore it, right? So why do you know it's so important, so much so that it's at the top of your mind all the time, like, what? What from your experience? Keeps you in that mindset, because you don't seem burned out, you don't seem upset by it, you know, no,

Terry 53:48
the fact that I've got the opportunity to manage it effectively. But when you have gastroparesis, you have your eyes affected like mine were, even the ability to swallow has been affected by some of the crap that you know, I did the damage earlier, so you have enough experience in that area. And so all of a sudden, somebody walks in says, Here, I'll give you these things that'll help do what you've been trying to stay away from her trying to accomplish before they give them to you. Use the tools they're there to make your life easier. It's 1000 times better for me now because of the tools that I have, and they're not even what you know, some of the biological side of the equation is working on with beta cell encapsulation, and, you know, stem cell manipulation, that kind of stuff is coming, but you know, it could be another 10 years before that gets through. And if you try to get something biological through the FDA, you think it takes long to get technology through. Way. Try to get that through. Yeah,

Scott Benner 55:01
it's gonna take a bit. You have so much perspective, and you know the alternative, and you're like, I mean, if you're gonna give me these tools, I'm gonna use them, because the alternative is needles in my eyes, and the alternative is, I mean, the vagus nerve being damaged is it's not just I have slower digestion. Now, like you said, there's a lot that comes with that. Yeah. Are you impacted by gastroparesis at this point in your life? No,

Terry 55:25
no, I haven't been since I got on the pump and sensor. Good for

Scott Benner 55:30
you. That's awesome, Terry, you're great. I talked to you forever when you meet young people and because I'm assuming you do with all the good work you're doing everywhere, is it in your mind, like, how do I impart the important part of this to them without scaring them or making it be like, Oh, this old guy thinks he knows something. Like, you don't even like, how do you talk to people? Because I struggle with that. Sometimes I try

Terry 55:51
to make get relaxed. Throw some humor in there. You know, like when I was on the beef pork insulin, I tell them I used to smell like a bacon cheeseburger. Now, some of them look at me and say, really? And I said, No, that's a joke, you know, but I it gives them a little perspective. I said that stuff was terrible. It didn't work. What you have right now is 100% better than what I had back then. Now it's not I walked up to school through 10 feet of snow barefoot both ways. You know, it's not one of those kind of things. I had all these complications, and I just try to go through them quickly. You don't want to go blind, you don't want to have a limb amputated. Have digestive problems and have to wear different bags, and your kidneys fail, and you have to go to kidney dialysis, you have the opportunity to eliminate all of that,

Scott Benner 56:48
so you give them the perspective without trying to scare them about it, like it's honest, but it's not like, it's not like you're trying to jump out from behind a door.

Terry 56:56
One of the nice things about diabetes, you can be looking at your phone all

Scott Benner 57:01
day long, if you want finally have an excuse to hold that cell phone. And nobody

Terry 57:05
can come up to you and say, put that cell phone down. You can say, I'm checking my blood sugar.

Scott Benner 57:11
That's probably a good way to get kids interested, because most people don't know that. Do you have a cardiologist? I'm wondering how you're like, look like, how do you manage? Are you trying to pre empt any kinds of because, I mean, you have, like, high blood sugars all those years like, you probably feel pretty lucky not to have any heart issues. But do you manage it like? But you know, you're keeping ahead of it.

Terry 57:34
The doctor that I got after I got rid of my internal medicine doctor, and that was for various reasons way back then, before I started with this endocrinologist. She's a doctor, she's from Serbia, and she's absolutely phenomenal. I just love her. And she's now kind of developed into research, and so she doesn't take new patients on, but she kept me on because I've been with her all these years. This was almost 30 years ago. She put me on a low dose blood pressure medication in a low dose cholesterol she said, you don't have either one of those now, but she said, In 20 years, because you're type one diabetic, you're going to be affected by that. So art wise and cholesterol wise, because of her and what she did, I have been without any real problems to that effect. Now what I did is I moved myself. You know, you have to in today's medicine. Got to have an internal medicine doctor as a primary care well, I went over to a geriatric doctor, and she is, you know, takes care of people that are aging, aging, things that are going on between her and my endocrinologist. That's my, basically, my sphere, other than the fact, I had both of my knees replaced due to osteoarthritis. Other than that, those two ladies are the ones that are taking care of me. And I've had stress tests. I've had heart monitoring. Blood pressure, sometimes it gets a little bit high, probably because I get a little too intense with all my work on diabetes, going around to people and get excited about it. Other than that, no, I haven't. Oh, that's great. Haven't had any other residuals.

Scott Benner 59:32
We don't talk about this enough, and if I talk to somebody your age, and I don't ask, I'll get an email about it. So you're having any trouble dexterity wise, do you said a thing you worry about for the future with pumps and inserting things,

Terry 59:45
no for the most part. I mean, got a little arthritis in my left hand and my middle finger. For some reason, it just hit that. That's been it. But otherwise, I can manipulate and put on infusion sets and sensor now I do have my one. Helped me put on a sensor, because I like to put it on the back of my arm, and it's easier for her to put it back there than it is for me. But I could put it my abdominal area or, you know, a lot of times people are putting it on their thighs, right, you know? So, yeah, I don't have that problem. I do try to, I exercise every day. I walk about three miles every day, and I try to do resistant exercises because of my eyes and the blood vessels. I can't do, you know, heavy weight training or anything like that, but I can do resistant, resistant bands, stuff like that, trying to, you know, keep myself in shape and do balance exercises, because the older you get, for some reason that seems to go one way or the other. So I try to try to keep that, you know, functional.

Scott Benner 1:00:50
You don't want to fight through all this that fall. Yeah, I feel like, no, in that time it takes you to hit the ground, you're gonna be like, Are you kidding me? Is this how it's gonna happen?

Terry 1:01:00
Exactly, exactly.

Scott Benner 1:01:04
Diabetes for five, five decades and a dog toys gonna take me out, huh? All right, yeah, exactly No. I'm

Terry 1:01:12
not gonna go that way,

Scott Benner 1:01:13
not today. Satan, like So Terry, I can't thank you enough for doing this with me. I really did enjoy it. I appreciate that you come on and and, uh, and having this conversation with me. Thank you very much. Hey, I

Terry 1:01:24
did too. I hope that it's helped and it will help other diabetics, because that's my main goal, and I'd be willing to talk to any diabetic or help them understand I do every day as a Medtronic ambassador. I'm on the board of the UNMC Med Center Advisory Board, so I try to work with diabetic patients as much as I can, and I'm more than willing to do that.

Scott Benner 1:01:48
Are you on social media? Can people find you or

Terry 1:01:50
yes, yeah, yeah. It's Terry Weland, okay, you should join my R, R, Y, W, E, l, a, n, d, Terry, you

Scott Benner 1:01:58
should join my private Facebook group, there's 53,000, active members in there. They could use your your your perspective, sometimes, I

Terry 1:02:06
will do that. Pretty awesome. Actually send you a request and you can honor, let me,

Scott Benner 1:02:12
I'll send you that. That'd be wonderful. Well, thanks again for doing this. I hope you have a great weekend.

Terry 1:02:16
Thank you. You also, Scott,

Scott Benner 1:02:18
thank you. Applause.

Speaker 1 1:02:19
A

Scott Benner 1:02:26
huge thanks to a long time sponsor touched by type one. Please check them out on Facebook, Instagram and at touched by type one.org. If you're looking to support an organization that's supporting people with type one diabetes. Check out. Touched by type one a huge thanks to Dexcom for supporting the podcast and for sponsoring this episode. Dexcom.com/juice, box. Go get yourself a Dexcom g7 right now, using my link if you're newly diagnosed. Check out the bold beginnings series. Find it at Juicebox podcast.com up in the menu in the feature tab of the private Facebook group. Or go into the audio app you're listening in right now and search for Juicebox Podcast, bold beginnings. Juicebox is one word. Juicebox Podcast, bold beginnings. This series is perfect for newly diagnosed people. Hey, you listened all the way to the end. You might want to know more about the Juicebox Podcast. If you do go to Juicebox podcast.com scroll down to the bottom and subscribe to the Juicebox Podcast newsletter. Each week. You'll get a rundown of the shows from the past week, just in case you missed something and you think, Oh, I would have loved that. Now I know. Hey, what's up everybody? If you've noticed that the podcast sounds better, and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording, doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit it? You want Rob? I can't thank you enough for listening. Please make sure you're subscribed, you're following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. You.

#1388 Multiverse

Bridget who is a former educator has 2 kids that have Type 1. We talk about raising a young type 1, 504 plans and planing for a possible school lockdown.

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Scott Benner 0:00
Welcome back friends to the Juicebox Podcast.

Bridget has two children with type one diabetes. She's a former educator, and today we talk a lot about what goes into raising very young children with type one we talk about 504 plans, and we delve into how to address school shooting possibilities in those 504 plans. 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. Are you an adult living with type one or the caregiver of someone who is and a US resident if you are, I'd love it if you would go to T 1d exchange.org/juicebox and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa. This is the way t 1d exchange.org/juice, box. It should not take you more than about 10 minutes. If you're looking for community around type one diabetes, check out the Juicebox Podcast, private, Facebook group. Juice box podcast, type one diabetes.

Today's podcast is sponsored by us Med, US med.com/juicebox, you can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, libre, Omnipod, tandem and so much more us, med.com/juice box, or call 888-721-1514, the show you're about to listen to is sponsored by the ever since 365 the ever since 365 has exceptional accuracy over one year, and is the most accurate CGM in the low range that you can get ever since cgm.com/juicebox

Bridget 2:06
I'm Bridget Tisha, and I have two kiddos with type one diabetes. My son, Teddy was diagnosed when he was 18 months old. He's now seven, and my daughter Eliza was diagnosed just after she turned two, and she's now five years old. My kids are back to back in school, first grade, in kindergarten, and I really hope to share my experience with kids, young kids in school. As previous to having children, I was an assistant principal, and so I have a little more insight into what's going to keep our kids safe and happy while they're in school. So I'm happy to be here.

Scott Benner 2:54
That's awesome. I'm happy to have you wait. So let me do this again. You have two kids. The first one was 18 months.

Bridget 3:00
Yeah, just a baby five. Now he's seven, seven,

Scott Benner 3:04
excuse me, and the five year old was two when they were diagnosed.

Bridget 3:08
Yep, she had just turned two, and now she's five years old.

Scott Benner 3:13
Okay, um, wow. Do you have any other kids?

Bridget 3:16
No, we're two for two. So where's that?

Scott Benner 3:20
I was gonna say, any plans for a third kid?

Bridget 3:22
No, I don't know if the odds would be in our favor. So we're gonna we're two for two.

Scott Benner 3:27
Yes, it's gonna say, did you think of having more kids before this happened?

Bridget 3:31
You know, when my husband, I were married, he's the youngest of five, and I'm the middle of three, so we wanted to have a larger family, thinking three, maybe four kids. But at the time of my son's diagnosis, when he was 18 months old, I was five months pregnant with my daughter, and it was just to say I was at capacity with taking care of him and then being pregnant, and then obviously her diagnosis to follow. I still am at capacity. So we are so lucky that those two are our two, but they're going to be our only

Scott Benner 4:09
two. Yeah, I wouldn't even get a dog if I was you. No, I'd be like, nothing that takes more of my time. No way. You just said something. I don't know if I heard it wrong when my husband and I were married. You mean at the time you got married,

Bridget 4:21
yeah, we actually were married for about nine years before we had our son, and so we had a lot of time to think about how we wanted to start our family for us. We really considered finances. And we said, once we make X amount of dollars, I feel that we could financially live the life we want to live and give our children the life that we want them to have. You know, we hit that X amount, and we said, maybe in two years, then maybe two years, and maybe two years. And so, like I said, we were married for nine years before we decided to have our kiddos.

Scott Benner 4:50
Was the extra years? Were they for more money piling up, or just, you just kind of didn't, like get to it, or you were doing other things?

Bridget 4:58
No, it was more of like. Found were originally from Cleveland, and then we moved to New York City. We lived in the city for the past 10 years, and then just last year, in the summertime, we moved out to the suburbs. We traded in the city for the beach after having been married in Cleveland and having this adventure in New York City and living life there. You know, that's actually where we started our family in the city, to then move out here now. So it's more of getting married young, living our lives together, and enjoying each other, to then decide to start a family. Cool, yeah.

Scott Benner 5:32
I mean, I live near New York, and you see a lot of people kind of run to Jersey or Long Island or something like when, when it's time to have a send to kids to school, right?

Bridget 5:43
We're across the bay. Yeah, we're in Westport, so we're across from Long Island. Just

Scott Benner 5:47
the idea of having your kids, like, walk through the city every day when they're five to go to school or six. So, like, it's, I don't know, like, I don't think it's for everybody, but you were a city person. You lived there a long time, so, well, yeah, we did, what about it made you move?

Bridget 6:01
It was COVID, I say, of course, as if that was the catalyst for a lot of changes with families, my husband got COVID Three weeks into lockdown, and at the time, people were still disinfecting their mail. He had a quarantine for 10 days in our bedroom, and I was in the rest of the apartment with two kids. Everyone cried every day. My daughter wasn't even one. My son was two at the time. And it was then that my husband thought, you know, let's find whatever, an Airbnb, a lake house, a rental. And sure enough, this home was on the market. They weren't showing it because everything was shut down, but there was a garage code that they let us punch in and go look at it ourselves. So that was really the catalyst. And then once our kiddos school reopen, we would go back and forth from the city out here in the summertime, and then just made that permanent move when my son started kindergarten, which is a pretty common story for Yeah, New York City families, I'm

Scott Benner 7:01
laughing about the how did you choose your house? Well, it was one that was for sale and had a garage code, so

Bridget 7:07
you got it. Yes, the one we the bar was pretty low.

Scott Benner 7:12
This one will be fine,

Bridget 7:15
yeah. I mean, there was only so much Tiger king that he could watch to then look for a house. So it worked out well for us. I'm

Scott Benner 7:23
a solid hour train ride from Manhattan, and I knew realtors that were selling houses sight unseen, at like, exorbitant markups, because to people in Manhattan who were just like, I need to get out of here. Well,

Bridget 7:36
I'm gonna say you're talking to one of them, but we did buy three weeks into lockdown, no one knew what the market was going to do at that point.

Scott Benner 7:43
Yeah. No, not, not that early on. Hey, when you said everyone was crying, did you mean all four of you or just the kids?

Bridget 7:49
Oh, no, all four of us. All four of us cried every day.

Scott Benner 7:53
Do you think now, listen, I'm not saying you have a tiny little apartment, but when I was young and broke, we looked at apartments in the city and didn't end up getting one often. I think back to why we didn't, and I think it was because the best one we found, meaning the best space that we found, the toilet, was in the kitchen. There was like sides of the bed you couldn't traverse because it was too close to the wall.

Bridget 8:15
Yes, I'm sure we looked at the same apartment at one point or another. Our apartment worked out well because our kids were still so small, yeah, where, even now, by New York standards, was a very large apartment. I don't think that we would be as loving or as kind to each other as we are in a home versus that apartment. Yeah,

Scott Benner 8:38
it happens when you're too on top of people, it's hard. Yeah. Okay, so let's figure out your 18 month old, is your oldest? They were diagnosed first, and is there any other autoimmune in your family or type one. Today's episode is sponsored by a long term CGM that's going to help you to stay on top of your glucose readings the ever since 365 I'm talking, of course, about the world's first and only CGM that lasts for one year, one year, one CGM. Are you tired of those other CGMS, the ones that give you all those problems that you didn't expect, knocking them off, false alerts not lasting as long as they're supposed to. If you're tired of those constant frustrations, use my link ever since cgm.com/juicebox, to learn more about the ever since 365 some of you may be able to experience the ever since 365 for as low as $199 for a full year. At my link, you'll find those details and can learn about eligibility ever since cgm.com/juicebox, check it out. You've probably heard me talk about us Med and how simple it is to reorder with us med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up. Up to be called if I don't respond to the email, because I don't trust myself 100% so one time I didn't respond to the email, and the phone rings the house. It's like, ring. You know how it works? And I picked it up. I was like, hello, and it was just the recording was like, US med doesn't actually sound like that, but you know what I'm saying. It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it, push this button if you want us to send it, or if you'd like to wait. I think it lets you put it off, like, a couple of weeks, or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it. Us, med.com/juice, box. Or call 888-721-1514, get your free benefits checked now and get started with us. Med, Dexcom, Omnipod, tandem freestyle, they've got all your favorites, even that new eyelet pump. Check them out now at us. Med.com/juice, box, or by calling 888-721-1514, there are links in the show notes of your podcast. Player, and links at Juicebox podcast.com to us, med and all the sponsors. So

Bridget 11:08
the type one that is within our family is one of my husband's older sisters. She was diagnosed when she was 11 years old, and previous to her, there wasn't any family history that when she was diagnosed, it was actually because she suffered a seizure, went to the ER, and that's how they discovered it. Just last year, one of her two sons, who's eight years old, was also diagnosed, type one. Okay, I say my kiddos kind of are the family history. My sister in law, her name is Sarah. Sarah was diagnosed when she was 11, and then my two kiddos, and then, like I said last year, one of her two sons. Further information is that there's 11 grandkids on that side of the family. Of the 11 grandchildren, three have type one diabetes. One actually had a congenital heart defect, and there is another who has a severe form of muscular dystrophy. Wow. So there's a lot going on, at least on that side of the family that really, our family, in itself, could be a research study, but we were familiar with it before the diagnosis,

Scott Benner 12:21
does your husband have celiac or hypothyroidism or something like that? No,

Bridget 12:26
neither. Now, my mom does have hypothyroidism, so it would be a maternal grandmother, but nothing else within the family. Yeah,

Scott Benner 12:36
listen, Arden was diagnosed a couple of weeks after her second birthday. And that was, I mean, crazy enough. She must have weighed like 19 pounds right before she was diagnosed. She was down to, I think, 17 when she was diagnosed, or something. But an 18 month old, yeah, it's so high. I mean, you and I know things that other people don't like, thankfully, no, but it's just right. It's difficult on a level. It's hard to put into words, yeah, but your first diagnosis was, what? A few years five, five years ago, a little more than five years ago, right?

Bridget 13:11
Yeah, yeah, about five. I'm trying to do that quick math, yeah, five and a half years ago at this point.

Scott Benner 13:17
So does your 18 month old start with the CGM, yes. Actually,

Bridget 13:21
we left the hospital on the g6 part of the story of Teddy's diagnosis was it was over Christmas time, so even though we're living in New York City, we went back to Cleveland to visit family, and he was diagnosed on december 27 and while we're there, sure enough, and Sarah, even though she's in New Jersey, She obviously was in Cleveland, visiting family as well. She came to the hospital the minute that we heard the diagnosis. We called her right away. So she came to the hospital and basically said, this is the technology you need. Don't let them tell you, otherwise, you're smart enough to figure things out as needed as you go, but the technology is basically going to hold your hand as you figure it out. So yeah, we left the hospital on the g6 and then 10 days after that, once we traveled from Cleveland back to this city, we started on the Omnipod. So we were early adapters. As soon as we could have been we literally had to get the prescription filled in that time to then start the Omnipod.

Scott Benner 14:29
Aunt Sarah was some good advice early on. No kidding, yeah,

Bridget 14:33
I don't know how families do it without an Aunt Sarah, because she's been such a source of content and comfort she has, the experience and empirical evidence the back of what she says, but then we also get the warm and fuzzies from her because she's staring at So, yeah, if I could be anyone's ver real Aunt Sarah through this podcast, then

Scott Benner 14:59
all the. Matter, that's wonderful. So insulin needs at 18 months, you were still able to use a pump.

Bridget 15:05
We did. We started on it. Like I said, we never really went through a quote unquote honeymoon stage. And as I talk to more people, it seems more and more common, just because Teddy was, quote unquote, so far gone. Once we were transferred at a different hospital, we ended up speaking with an ER doctor who saw us, and he just told us, You were hours away from losing this kid. That's how far gone he was. So we didn't have any insulin needs, or, I say, like light insulin needs or diluted that's what I was looking for? No, yeah, so we started on that pod, yeah, 10 days after we left the hospital.

Scott Benner 15:47
So he's in DK, but when you look back in hindsight, how long had it been going on before it hit him that hard? Yeah,

Bridget 15:54
probably, I'm gonna say the the first sign or first red flag that we noticed was about three and a half, four weeks before his actual diagnosis, and I had gone to our pediatrician for his 18 month well baby checkup, and I just said, you know, we started on water, which is common among kids that age, in a sippy cup, and he's peeing out of his diaper. What do you recommend? And our pediatrician at the time said, you know, there are these things called spouse pads, or like maxi pads for diapers, and I'll help with absorption, and he'll be great. His weight was similar to what it had previous been, previously been about six months prior. So there wasn't that huge weight loss, but that was the initial again, like questioning because of a red flag, which we didn't know at the time was a red flag. Yeah, the urination was we thought due to his drinking water.

Scott Benner 16:52
Yeah, you probably thought, like, hey, super hydrated. This is awesome. I mean, looking

Bridget 16:56
back, it's actually more embarrassing, because I did think it was awesome. Yeah, I mean, he would wake up. We'd put him in his crib, and he would wake up at midnight, and he would be soaked from knees to armpits in his PJs because he peed out of his diaper. And we started using ASL sign language as soon as Teddy was born, so he could just communicate with us, and he would be signing for water, and we were breaking our arms, bent ourselves on the back to say, look at our child asking for water, like

Scott Benner 17:30
hydrating. Beautiful, yeah, oh, Bridget Can I tell you? I I've said this in the podcast before, but it you're bringing back so many memories for me. Yeah, that we were heading to a family vacation, and we stopped for gas, I'm gonna say, an hour before we got to this, like, beach house that my mother in law had rented for everybody. And when we stopped, we got this, like, one of these, just giant drinks, right? Like, I mean to say it was 64 ounces is probably not even correct. It was huge, okay? And Arden was just, like, in a car seat, and she wanted it, and we gave it to her. We got to where we were going. She was done. She finished the entire thing, and I went to get her out of her car seat. So you have to kind of reach down the side to get the buckles Right, yeah, and I reached down, and my hands, like, went underwater. Like, I'm not over exaggerating, in a puddle, yeah, yeah. No, no, yeah. I mean, and I My first thought was, oh, God, she spilled this drink into her seat. Like, that's what I thought happened, because I was, because I remember, like the cup was empty. And I was like, Wow, that's crazy. Like, she's such a small little person, you know? And then I was like, this is obviously what it is. And I picked her up, and I'm like, oh, Kelly here, like, you know, and we got her out, and I unbuckled, then I saw the seat, like, full, and I unbuckled it from the car, took it. I had to dump it out of the car, yeah? And then, like, rinse the whole thing off and wash the thing. But it was all urine on, unbelievable. It was insane. Yeah. And still, for reasons that, if I stopped and think about now, keeping in mind that that was probably over 18 years ago, yeah, as I think about it right now, I'm like, dummy, why did you not put everyone right back in the car and drive to the hospital? Unless you don't know what you don't know. I mean, but how do you not know that one, you know what I mean, like, like, that's not right. Like, my brain should have said that's not right and right. You know I get

Bridget 19:28
it. I do yeah, and I say, I hate that. I get it. And I know that our stories are so common, it's almost scary how common it is, or how that progression works probably, too, yeah, the urination, too. Then other red flags, and then the diagnosis, and then the hindsight of all those red flags stacking up, and

Scott Benner 19:50
then having somebody tell you in the hospital that Arden's like, she's a day away from being in a coma when you bring her in,

Bridget 19:58
yeah, yeah. I. Do know? Unfortunately, no, I'm

Scott Benner 20:02
saying you know, like, you know, yeah. Anyway, okay, so you go back to your Well, you're in Ohio, though, where you're diagnosed, yeah. So

Bridget 20:10
our pediatrician was in the city, and that's where our whole life was. And so now we go to Cleveland for Christmas, and on Christmas Day, Teddy did not want to open any presents. He was so tired and showing blue, like cold, like symptoms, labored breathing, kind of a raspy voice, cough, didn't want to eat or drink anything. So it was a bummer of a Christmas. But the next day, on December 26 we took him to an urgent care. After going to the urgent care, the doctor sent us to get a chest X ray, thinking RSV or pneumonia, those came back clear upon leaving now the urgent care doctor said, you know, if he's not better by tomorrow morning, take him to the ER, that's the direction you're heading in. Sure enough, that evening, we watched Teddy's belly button get sucked back to his spine because he was breathing so hard now he was sleeping, so we were hesitant to wake him up, to take him, and literally, just waited for him to wake up in the morning, you know, 6:30am to take him to the ER, we do that immediately, like I said, Because he didn't seem any better. And in that type one world, I say tail is old as time. They try to get an IV in him, and they couldn't, because he was so dehydrated. The ER doctor asked us a series of questions of signs and symptoms, and then let's say question number six were, how were his diapers? And I said, as much he's peeing out of them, can you soak? And this doctor immediately started and said, he has diabetes. We're going to take care of him and trying to get the IV in him. Then, like I was saying they couldn't, this doctor steps in to insert an IV into Teddy's neck because the other veins weren't available in his arms and feet. I will tell you, I'm actually hearing this go on from another room, as I am five months pregnant. Didn't eat anything in the morning, and I'm holding Teddy on a bed, and my husband says to me, you don't look so good. Are you okay? And I say, if anyone has a banana, I would feel a lot better. So they take Teddy away from me. With my husband, they go into another room. I now am starting to have tunnel vision. My mustache is sweating, and I tell one of the nurses, I said, I'm gonna pass out. I'm just going to lay down here, but I'm okay. I just need to eat something so I now, never actually lost consciousness. I'm talking with the nurse the whole time, and I hear this, er, doctor, I'll edit the profanity say, let me f and do it to get that IV into Teddy's neck, because the nurses weren't able to at that point, I did start to feel a little better, and I had something to eat, and they transferred us from the hospital we were at to one with a better pick you, where we stayed for four days, and then we were just in a regular room for two more days to learn All Things type one before we were then released.

Scott Benner 23:22
Wow, that's crazy, yeah, jeez. And at any point during this, like, when do you correlate it to, oh, I have another baby. I'm cooking a baby right now. Like, is this gonna keep happening? Is this gonna happen all because you have to think that at some point, right?

Bridget 23:38
Yeah, at no point in the hospital, though, because it was everything was so compartmentalized hour to hour. And truly, Teddy was in such a state that we, on day three in the PICU, were saying, When is he going to be himself? When are his eyes not going to be so glassy? I mean, it took a long while, felt like a long while, for him to like, come back to himself. We were actually told when we seriously asked that, when will he be back to himself? But they slowly had to bring his blood sugar down to avoid potential brain damage. And it was only I say after that fourth day where Teddy seemed to like come back to life. Could I think anything beyond and so when our daughter was born, we did ask our endo about doing the auto antibody testing, and our endo just said, Absolutely, but wait until she's two and a half. The results seem to be more conclusive after two and a half. Oh, and sure enough,

Scott Benner 24:36
don't worry. Yeah, we'll give you results before then. Don't worry about it. Yes.

Bridget 24:41
And so that's how we found out. Yeah, I was always on our own.

Scott Benner 24:45
Okay, all right, I see. So let's see, what'd you want to come on the podcast about? That was all very interesting. I appreciate that, and thanks for the trip down memory lane too. Yeah, Jesus. I can picture myself and Arden. And and Kelly in different scenarios, still like we're standing there, still,

Bridget 25:04
still when she a diagnosis when she was two, yeah, when you picture it now and granted, you know she's a lot older than my kiddos. Is there a sense of time separation? Because right now I still could see or feel like my kiddos are those babies, but they're five and seven. So do you have a time separation of that memory to present day? Yeah,

Scott Benner 25:31
it just makes me like talking about it. I don't know how to put it exactly. I feel tight across the top of my chest. That's interesting. Like, on the top of my chat, like I feel like, I don't know if this is like, fight or flight, or if I'm like, getting ready to try to do something. I flashed a certain moments over and over again. We went for a walk through, like, kind of an arboretum the night before, and I remember looking back at her and thinking, God, something's really wrong with her, and I remember hanging over a balcony with a computer to steal Wi Fi from the house next door to figure out if she had diabetes, because Wi Fi wasn't a thing back then. Yeah, I can feel sitting in a chair with my wife after they took her from us, like I can feel my wife touching me right now, like sitting there because I was so sad and like I I've said it before here, like I felt, like I could feel how sad Kelly was, like when she touched me, yeah, and I've never had that feeling before. And

Bridget 26:31
would you say that those that vulnerability is something that is was common? Like, were you in in tune and in touch with your emotions at that time to recognize what you were feeling. Or is it only in looking back that you now can re feel and name those emotions? No,

Scott Benner 26:50
I mean in the moment, it just all hurt. It all felt like different kinds of physical pain. Yeah, like as after you realized what was happening, like, I remember like, holding in crying in the emergency room, yeah, and then holding it and holding it. Then I couldn't and but Arden was asleep by then, I remember feeling so grateful that she didn't see me cry. Yeah. Like, that was one of the moments I remember sitting at a traffic light talking to Kelly and saying, I think when we get there, we were saying, like, she's gonna have type one diabetes, like, that's gonna happen, yeah? And I remember saying, like, everything's gonna change, yeah, like we're gonna have to do a really good job. And Kelly was like, Yeah, you know. And like, but we just sat at this red light in this industrial district, and it was so I don't know, honestly, it was, could have been three in the morning when we were heading to the hospital. Remember the time anymore, but it was super late, yeah, and I remember sitting there thinking, like I don't need to sit at this red light, like I could just go through it. And then I but I just sat there instead. And I remember being in the Kelly sent me out for a meter earlier in the evening, and I had the conscious thought, standing in the in the pharmacy, in a 24 hour pharmacy, that if I didn't leave with the meter Arden, would never get diabetes. Maybe it would be a good use of my life to just stand here, yeah, like, so that this doesn't happen to her. And, I mean, it's silly, but like, that's how I felt in the moment. Yeah, I had to will myself out of the out of the store with the stuff with the meter. No,

Bridget 28:27
it's not silly. It's relatable. I mean, the the negotiating that I've done with myself and my own mind, or, you know, with my husband. My husband's name is Joe, I will tell you that when our son was diagnosed, it was all new to us, but he and I are both radically type a people that we knew we could handle anything. I remember thinking and saying, Actually, I just want to be 90 days out. Give me three months of this, and I'll be a pro. We're now way beyond the 90 days, and I'm still not a pro, but when my daughter was diagnosed, it was only at her diagnosis that my husband was holding her. Did he cry because he knew what was ahead of her, where? When our son was diagnosed, I'm gonna say ignorance is bliss. You know, we didn't know the reality of it, even though we had the overarching idea. But it was when our daughter was diagnosed that a lot of those similar emotions paralleled what you were saying. Yeah,

Scott Benner 29:35
no, I hear that, especially now that you understand what's about to happen and not just the physical and the time and the mental energy stuff, like, that's, you know, that's part of it, but the implications, you know, over them, or even, like, I mean, Arden's 20 and, yeah, you know, the other day we were talking and, like, we're adjusting some of her medications, their blood sugar has been. And higher than we wanted it to be for, you know, a couple of weeks while we're getting stuff together, sure. And I was like, I need you to do this. And she's like, I'm trying. I'm studying. I was like, Alright, I need you to just take 10 minutes. Stop, like, stop for 10 minutes. And I hate that. That's what we're talking about off at college. And she's doing a really good job, and she's putting all this effort into studying and everything. Yeah, and I'm telling her stop studying to do this, and it feels so very unfair, and I know it's hurting our relationship. It's hurting her like her experience, and yet it's the exact right thing to do. It

Bridget 30:39
is and I'm convinced, whether we're talking about a kid who's two or who's 20, that we as parents take it on. I say that, you know, I'm telling my story because my kiddos will have their own story to tell, and I want to make sure that diabetes is the least interesting thing about them. And so here you are talking with your 20 year old daughter, essentially doing the same thing to make sure she's safe and healthy. So

Scott Benner 31:12
I was upset last night where my wife and I were talking about this in bed, and she's like, you're talking to me, like, I'm her right now. And I'm like, I'm sorry. Like, I'm like, I'm like, hold on, you know, yeah, and I said this is going to sound crazy for a second, or not crazy, but just, I don't know. I don't know how it sounds exactly, but when Arden struggling with something, or I'm even seeing she's doing well, but there's a struggle ahead, or you're worried about the things like we just talked about, I picture different people that I've interviewed, or people from the Facebook group, yeah? And I look at them all as, like, you know, the idea like, you know, so popular in movies now, like a multiverse, yeah, right. I look at all the people that I've spoken to, yeah as infinite possibilities about where my daughter could go yes, and I'm trying to get her in the direction of one of the people whose story seems the most well balanced and healthy. Yes,

Bridget 32:12
that's totally, totally see that or relate to that. I only recently went to a breakthrough T 1d event, and there's a lot of younger parents and parents younger kids. And then there was one woman in particular who said, My daughter is 24 I just come for the extra support. This is what she's doing, x, y, z. Her daughter was diagnosed when she was about three years old. And I said, You're the one I want to talk to to know that you have a grown up, you know, like your child has now grown up, like you've walked the walk. As I can offer any sort of support, I can almost like to newly diagnose parents of younger children newly diagnosed. I cannot get enough encouragement from I say, someone like you, Scott, having Arden or this other mom that was there at the event, because we don't know what the future holds for them. We don't know as parents, how responsible they are going to be in college. So we're trying to bank as many good years as we can so that they can live like they want. Yeah,

Scott Benner 33:14
not only that, but you can make every right move, and it won't matter like, you know, you still have young kids. Like, look, this is not a dig on you. You have young children, right? And as your kids get older and older, it's and not that you don't see this in other personal relationships you have in the world, but you recognize that, like you're not in any way in control of who someone ends up being, yeah, or how they take something when it's said to them, or how they traverse an experience when it's presented to them, like, you just keep putting them in the situations and saying the things and modeling the things that you think are gonna lead to some sort of like success in those moments. Yeah, but like, I look at like there's a guy right now. I won't say his name, but there's a guy I'm thinking of right now from the Facebook group. I don't know him. He's a grown man. I think about him almost all day long. Oh, wow. Like, like, he just his life is just not going the way he wants it to go, and I'm finding myself trying to figure out how to help him, even though I don't know him and he hasn't asked for my help, yeah? But I think I'm trying to figure out how to help him, in case, one of the things I'm seeing happen to him happens to my daughter. Gotcha, yeah? You know, I don't think I'm really gonna help I want to be clear, I don't think I'm gonna, like, fly in, like, on a white horse and save his life. Yeah,

Bridget 34:40
yeah. Very Steinbeck, of you, like, they're all my sons, as if you get out there,

Scott Benner 34:44
well, it's not even, like, I don't even know that. Like all, listen, this is a weird medium. I talk into this microphone. You guys take out of it. What you take out of it? I'm not in control of that, right? I hope that more people take something good out of it than, than not, right? But for me. Personally and for Arden and my family, yeah? Like, I don't know. I just look at everybody as like a learning like, again, like, it's like a multiverse of possibilities of what could happen to her. Yeah, and I'm trying to figure out how to manage all of it, in case one of it. I mean, I don't know. Like, does this not sound like parenting, really? Like, yeah, yeah. So was

Bridget 35:22
there ever a time when Arden was, I say, in school, whether, like, elementary, then through high school, where she did actually surprise you, type one or not, but in the sense of you saying, like, you know, you never know who your kid's going to grow up to be or how they're going to react to something, was there something that actually surprised you about her in a particular instance,

Scott Benner 35:44
surprised me, like, badly, or maybe just,

Bridget 35:49
yeah, maybe just more of that what you expected, like, here we are talking about you don't know who they're going to grow up to be or what they want to do with their life. Was there, and my kiddos are so young that we just haven't experienced it. So is there, was there any time that you can think of, even if she were in elementary school to high school, where she actually surprised you with her reaction to something?

Scott Benner 36:10
So I think that when I'm surprised by Arden, it's because she comes off so strong that when she's not when she's actually hurt by something, that doesn't surprise me, but it it takes, I guess it takes me more by surprise, like, I'm like, Oh, I didn't imagine that you'd feel that way in this and then I remember that she's young and and, you know, like she's got her vulnerabilities as well, but she doesn't, she doesn't, she doesn't show them to people very much. And you can get confused into thinking, like, that's who she is, like she's, you know, like rock, like nothing touches her kind of thing. Yeah? Like, I mean, I've seen her break up with boys and expect, like, a thing to happen, and then it just, it's not what happens. She deals with it in her very own, like, kind of unique way. Yeah? So when something actually does knock her over for a second that shocks me a little bit.

Bridget 37:03
That's so interesting. Yeah, what I say? What a great quality to have, but yeah, I'm sure as a parent, then that is a bigger surprise,

Scott Benner 37:11
but also feels unfair, because I recognize that everyone struggles with things, and then I feel badly for not knowing what those things are, yes, because she's obviously taxed by them. Yeah,

Bridget 37:23
I say I can relate. When we were living in the city, our kids went to a private school was, you know, choose program up through 12th grade, and so they would hold some parent seminars on how to raise a reader. And one of them, in fact, was called How to instill grit into your child. And I attended this seminar, and I was like, oh, man, you don't even know, like, the definition of grit here is so relative, as we're talking about, you know, a 10 year old in a karate championship versus these toddlers of mine that I have and what we're dealing with. I heard

Scott Benner 37:59
some grown ladies complaining about something the other day, and I was like, Is this what qualifies? Is hard for them? I was like, This is insane. Yeah, it's all relative, right? Yeah, exactly right. When I was listening to them, like, these are things that are really taxing them, like, so I'm not making fun of them. I'm just like, there's nine different levels of hell above what you're experiencing. But okay, also I don't. I've spent that's an interesting thing. Like, how do you instill grit into somebody? Like, I've done a whole series about resiliency with Erica, because I thought about that as well. And in the end, I don't know that you can just make someone resilient. Yeah, I think it's just, it's how you react to things. That reaction to my eye, is built on whatever your lifetime of experiences is how the people around you reacted, you know, the tools you had at your disposal every time you were in one of those situations. You know, could you afford it? Because, I mean, all the other problems that come with everything, right? I don't think people just decide to be tough or not to be tough in a situation. Yes,

Bridget 39:01
I would agree on that. No, I just, I totally agree. It's all

Scott Benner 39:05
relevant, and it's what makes all this so scary. Because you could have, like, stood up to the first 20 things and been like, wow, bang, bang, bang, no problem. The 21st thing comes along and you're like, you know what? I can't do this anymore. Or it hits you from a different angle, and it takes you by surprise, and you don't get back up again.

Bridget 39:25
Yes, it's true. I remember I say even before I had kids, and within my extended family, there were some other just tough times and tragedies and saying to myself, I don't need tragedy to know how lucky I am. And then here I have kiddos, and then they're both diagnosed, and it's like, I don't I still feel that way. I still feel like I'm so lucky that they're ours. I didn't need the tragedy to know how lucky I am. And so that's interesting, how you say that too? Yeah,

Scott Benner 39:55
even though you didn't need it, did it level up your perspective? Oh.

Bridget 39:59
Oh, my goodness, leveled up my perspective and then changed the weight of my vocabulary. So I might have said previously, oh, I'm tough and I'm strong. Well, now tough and strong have such a larger meaning than they originally did. Or, you know, just to come back to grit, like I've always been a very gritty person, but now that grit is, you know, to the nth degree.

Scott Benner 40:33
I feel like I've been buried alive and unearthed myself like a dozen times. Yes,

Bridget 40:37
yes, that's it. And you might have even said before that you were resilient, but now the actual connotation versus denotation of resilience are even farther apart because of, yeah, what you've come through.

Scott Benner 40:52
I'm just always endlessly fascinated about why, like, people's reactions and situations. You know what I mean, like, at some point in my very young life, someone told me, You're adopted, like people had you, and they were like, eh, here, and then gave you to us. And my mom, of course, sold it like we were so happy to i She said all the things you would say and that are obviously true, but it doesn't negate the fact that somebody gave birth to you and was like, I don't know, yeah, but, but I feel like I'm okay, but obviously I'm changed at the same time, yeah, and then, you know, and then things happen again and again and again and again and and you're okay, but you're changed, okay, but you're changed. But I've never just sat down and been like, I give up, right? You know what I mean? And so I like, These things keep happening. I watched my son go through this for a while, like, where he was just, like, everything goes wrong all the time. And I was like, yeah, that it's not going wrong. It's just everything's always changing and morphing and reshaping into something else, and it's not what you expected. And so it feels wrong,

Bridget 41:56
that's it. And so it feels wrong, even though the reality is not black and white, and that good versus bad. And you know, I'll even share in talking with my therapist about this and my kids diagnosis that I went through something very difficult and very strange, and I am now changed. Being from Ohio, I have this Midwest almost toxic positivity, like this prima Pollyanna and I am not that same person that I was before their diagnosis. It's not to say I'm better or I'm worse, but changed, and so it's interesting to hear you even say that with your son in Yeah, in that regard, of just things not going the way you maybe envision, not even that you wanted, but just that you expect it,

Scott Benner 42:50
right? I watch him so interesting. Probably around 12 years old, he was significantly a significantly more talented outfielder on his baseball team than the other boys, yeah, but he didn't start. And you'd look back at it and say, well, there's a coach's dad there, there's, you know, coach and a kid and a lot of there's, yeah, there's these political reasons. And you step back and really suck? Is that what's happening? Like, does my kids suck, or is this like a political thing, right? Yeah, and you never are gonna know for sure until hindsight, but hindsight told me okay, it was political and it was structural, and he was trying to fight through a system, right? That's fine. Then he got to school, and he was treated really well in middle school, when he played, but then when he got to high school, he started off being treated well, and then he ran into a coach who was he came home one day and he just said, this guy's so cruel to everybody. I don't want to play for him. Wow. And he played for him for a while, and then one day, he just said, I'm not going to do this anymore. And at that point, Cole was starting in center field for his high school baseball team and playing well. And he went to the guy one day and said, I'm quitting, and Cole was on track to play in college, and he said, I'm quitting. I can't play for you anymore. I can't stand the way you treat these guys. Wow, what a brave thing. And you would think, but then everyone on the team turned on him, oh, man, and treated him poorly. So while he didn't get to play high school baseball for the last year and a half, he was in high school, yeah. And then he had to go off on his own, his personal time, and play baseball to keep, like, up the idea of going to college, yeah, then he got to college. And then you get to college and you realize, oh, my god, the same political structure exists here that did in, like, in Little League, it's and you fight through it again, yeah, and again. And he has this awesome senior season, and at the very end of it, God, I don't know if this is too personal, but somebody on the coaching staff apologized to him quietly into his ear for not seeing who he was sooner. Wow. Said to me, he's like, that was not comforting. You mean, I was who I thought I was, and you didn't see it, and you wasted this time in my life and my opportunity,

Bridget 45:10
right? That probably pulled on him. Yeah, all these

Scott Benner 45:14
things feel like everything stacked against you all the time, and you as a parent, are trying to say, look, you're healthy, you're standing upright, you got a good education, you met all these people, you had these experiences. They weren't where you expected them to be, but look, they've made you stronger. That's going to help you in the future. That's a hard thing to sell to a 21 year old, you know? Yeah, yeah. And a hard thing to sell to a little kid, all this struggle is going to make you stronger. And it's now He's 25 and it did. It all worked exactly the way we thought. But I don't know if you asked him, like, Would you trade it like? I don't know how he'd feel about like, the fiery walk through to be hard at the end. You know what I mean, right?

Bridget 45:52
I do. I totally do. And then to give it the title of brick, or do we qualify that then as better? Is it worth it? Yeah,

Scott Benner 46:04
because, because, to him, it probably feels like, I mean, I wouldn't want to speak for him, but I would think it feels more like you outlasted these mothers than I'm pretty right. This one's coming at me and trying to take my thing, and this one's trying to take my thing, and this one wants to get in the way of the thing I'm trying to accomplish. And I just didn't die in the face of their pressure. Yeah, yeah, yeah. I don't know what that's gritty, and also, it doesn't sound fun, but exactly

Bridget 46:30
that's something like, is it even? Is it worth it? You know, there are things that you come out of that you would say, Oh yeah, it was worth it, and I'm better for it. I don't know if he would apply that to the last year and a half he had in high school?

Scott Benner 46:43
Yeah, right. It isn't until you get, like, one win, and then I find, like, for me personally, it all sort of just goes away. Then, yeah, you're like, oh, I don't know if it's not something to do with our the timeline of our life and our expectations. Does that make sense?

Bridget 46:59
Yeah, almost like the recency theory. I can totally understand that. Yeah, tell me that. What is that recency theory is really just whatever has happened the closest to the time that you're talking about or referencing is what you hold to be true. So even if, like, you know, you went through all these hard things, but now life is better hunky dory. You could say that it's worth it, and it's really just because that's where you are now. So it's the most recent,

Scott Benner 47:24
yeah, if you didn't have long term memory, which, by the way, is maybe shaky to begin with, about how we remember things, but if I was just the person I am right now with all the thoughts in my head that I have and I didn't remember yesterday, I don't know that it would matter, right? You know what? I mean, yes, yeah, that. So that's the thing that I think you have to be able to, you have to be able to, like, not fall down. And if you do fall down and get up, and if you do forget up, keep moving and then not look back. I think all these things are true. Yes, it's the seething anger that you get when you look back at like, Oh my God. You know that happened, and that happened. I don't, I don't think about even problems I have today. Some of them are with, you know, professionally or personally or something like that. Like, I just wake up the next day and I'm like, Let's go again. I don't like, what happened yesterday? Doesn't matter. Yeah, my

Bridget 48:12
husband and I often, with our kiddos in particular, will say to each other, relentless forward motion. And that's what we have to do. I say to keep ourselves going, to keep them going, to make our family as harmonious as we can't we have this relentless forward motion, yeah,

Scott Benner 48:28
yeah. And as long as something doesn't literally kill us right, or damage us to the point where it alters our ability to be who we want to be, right, then, you know, you got to just take the good with the bad and then just keep going right. Try to stay with the good and keep running forward. I'm with Yeah. I really am, yeah, that's awesome. Geez, sorry. We're 47 minutes into this now, okay, dealing with school. Oh, this is what you really want to talk about. Tell me about school and 504 plans.

Bridget 48:56
Yeah. So I wanted to talk about 504 plans because as my kiddos are getting into what I call, quote, unquote, real school. I mean, they were diabetic when they were in preschool. We didn't need to have a formal plan in place because they weren't being tested on how well they molded Plato where now it's, I'm gonna say, a little more serious. And so in creating their 504 plan and having my experience as an assistant principal, my perspective was maybe different, even sharper than other parents coming into this. So I really wanted to talk about 504, plans, because they sound super scary. So here I am trying to be the prover real Aunt Sarah in offering comfort with the content to say these plans are in place to keep our kids safe and healthy. These plans are in. Place so that they can attend school like every other kiddo. And the specifics are going to be different for every kid, because there are individuals, but there are some ideas that apply to everyone, like actual testing in relationship to blood sugars, I hope that parents can recognize their kiddos have different actual physical behaviors and different cognitive behaviors when their blood sugars are obviously too low and you're in an urgent situation, but then also too high, I mean above 180 and we can see change in my son's focus versus where he is if he's in a more ideal range. And so that can be in your 504 plan. I also want to be clear that 504 are different than IEPs, and it's nothing that we need to dissect here. There's actually a podcast called the heart strong, and it might be episode 42 or 43 if I can plug it right here. And they talk about the difference between 504 plans and IEPs, depending on what your kiddo needs. IEPs are just more for, I'm gonna say learning disabilities, or if your child needs extra help on a specific area of learning more 504, are just the the medical plans. And I want to stress to parents that they are advocating for their kiddos, because they are the expert on their kiddos, and so these 504 plans really can be whatever you want them to be. Now, yes, the school needs to sign off on it, but you're there to advocate for your kiddo. Most schools or districts have actual 504 forms. I think a lot of parents hear the term 504 and they say, Well, where do I get it? Or how do I do it? You do not need to approach a 504 meeting with any documents in your hands. They will be created together with your faculty, staff, administration, the nurses in your school. That's one thing that I always came to the table with. I created an actual binder for my kids that talks about what type one is, how to react when the kids are at snack time or lunch, how to treat highs, what to do in an emergency, how to read the Dexcom. I even have a Excel sheet chart that if I were to fall off a cliff, you could match up the kiddos blood sugar on the x axis with the Dexcom arrow trend on the y axis, and then spot them together to say, okay, no action is needed. Or, oh, let's treat with 15 carbs, whatever it is while I

Scott Benner 52:59
Oh Bridget, how did you do that? Just a

Bridget 53:02
lot of time. Actually, I have to give the credit to my husband for creating the actual, actual Excel sheet. But truly down the x axis in increments of 10, we have it labeled from 60 up to 250 and then across the y axis we have each of the arrow icons from double up, single up, angled up, steady, diagonal down. And it works single down, double down, yes, and you can match up the kiddos again in increments of 10. So the closest blood sugar reading they are to 10. Let's see, for example, like if your kiddo is, I'm trying to find a good example here 90, but they are diagonal down, and according to their schedule, they're going to recess. They're heading out to recess. And my daughter, Eliza, is 90 diagonal down, and the nurse can't get in touch with me. She can go to this chart to say, oh, you know what? We're going to give her five carbs of sugar before she goes out to recess. So for us, it just be like five individual fruit snacks, and then we know Liza is safe to go out to recess. So it was created again, if I were to fall off a cliff and can't get in touch, or they can't get a hold of me, they don't need to. This was the the nitty gritty. I had to use that word that I wanted to spend a little more time talking about, though, on these 504 plans was if there were a emergency, if there's a lockdown if there's an active shooter, and that's where this binder or that chart would, in fact, come into play. And so it should be written out in a 504 plan the best care to keep your child safe and healthy. As I talk with more parents, moms in particular about this safe and healthy, typically for us, means a steady blood sugar that there isn't an emergency, yeah, where the reality is safe and healthy for all students is going to look different than our kiddos in those emergency situations. Yeah, I was wanting to connect the shooter that sort of thing. You've

Scott Benner 55:00
been, I mean, tell me what you did professionally again, or I

Bridget 55:03
had kiddos. I had, you know, worked in retail for a while, but then I was an assistant principal at an elementary school, and just previous to that, I was the writer for an instructional design company. So I taught people how to do their jobs. Taught garbage men how to physically drive the truck and sanitation workers what to do in a recycle facility. So lots of teaching, orientations, administrative work in that regard.

Scott Benner 55:29
So tell me, then, in a real like, like, emergency situation, yes, how likely do you think it is that a teacher is going to be like, oh, there's an active shooter in the building. Hold on. Let me get Teddy 504. Plan.

Bridget 55:43
Yeah, right, right. I agree with you that everybody

Scott Benner 55:46
get in the corner and let's pray to God. We're hitting the

Bridget 55:49
nail on the head with a hypothetical that's actually real. I so I wouldn't call it hypothetical. Your example is exactly what we're referring to, and so I've worked with, obviously, my kiddos, teachers and other teachers I know to say, what is going to be the best and the easiest way to take care of our kids in emergency situations. So every classroom, I'm gonna say, across the country, it has like an emergency go bag, and it's where they keep all of the kids emergency contact. I feel like I only remember my teacher bringing it like if we went on a field trip, but this backpack is in the classroom and would be wherever the lockdown location is for the kiddos. And so we keep this binder in those backpacks in the respective classrooms where my kiddos could be for reference, I do send an email the teachers a digital copy, because, I mean, it's so hard to talk about that you don't want it to be real. We have to keep them safe where, if my five year old is being escorted through the hallway as an active shooter is in the building, and her teacher pushes her into a art supply closet. That emergency backpack is not going to be there, but the teacher would have her phone on her so she could pull up that digital copy. My kids do wear spy belts throughout the day, and so they hold their medical devices, extra fruit snacks, things like that, to keep them safe and healthy, but it has to be thought of as as their parents. There is a Nobel Prize winner in economics, I think, from 2009 was the year, and she said that there's no reason that bureaucrats, no matter like how well meaning, like how well meaning, or like how intentional they are at solving the problem. They don't have the strongest incentive to get the solution right, but we as parents do. And so, you know, just from my experience, and then having the two kiddos put me in the new, the unique situation to share that, you know, I feel like they

Scott Benner 57:57
write it all down. They're like, it's all written down, it's going to be fine. And then when the time comes, nobody can find it, nobody knows what it means. What it means. Yes, you've got it. I want to tell you right now. Maybe this is wrong, okay, but here's what I told both my kids. Yeah. I said, if you're on the first floor, I want you out the window, zig zag to the to the tree line, go about 10 feet deep into the trees, make your way out to the main road, and then get back to the

Bridget 58:20
house. That's similar to Alice training. If any other parents or kiddos are familiar, you got it, yeah? That's called a similar to Alice

Scott Benner 58:26
training. Arden, I told bang, a juice box, jump out the window, zig zag the tree, walk. Like, I mean, I don't know what else to say. Like, yeah. I mean, I have had so many conversations with so many people in so many different situations where they have been what they thought was prepared, or they have been the people that they thought were going to be rock solid in the moment and then they just weren't. You know,

Bridget 58:49
we actually have told our kiddos the same that, if ever in doubt, they can have more fruit snacks or an extra juice box, whatever it is. Yeah. I mean, we've even gone as far as we tell the teachers, like all of their devices, if you're on a true lockdown, all of their devices can be powered off. People for decades, were handling their diabetes without the technology. So it can be done. And we have said, power off their devices and give them five fruit snacks every what I forget, what we said, There's something like 30 to 60 minutes until it's safe to turn them back on, as if, like, we'd rather have them running high than running

Scott Benner 59:25
low. Okay, you'd rather see your kid with a 300 blood sugar than beeping that draws attention to them

Bridget 59:31
exactly. And I say you're right for the beeps and the boobs. I mean, I had to tell my five year old she can't wear her light up unicorn shoes to school because, God forbid, she applied an extra ounce of pressure to her heels while in that supply closet to give away her hiding spot because of her light up shoes.

Scott Benner 59:50
You know, it's funny, so I see, Listen, I I know how often this happens, and I know that preparation is probably key, but at the same time, you. Think that I don't know. Percentage wise, this is not going to happen to most people. And then, so then there's, like, that other side of it is, like, are we freaking out a generation of people to be ready for a thing that may or may not happen to them? Like, can't. Like, it's such a hard thing to think about. You know,

Bridget 1:00:16
I oh my gosh. I do know what you mean. We live a stone throw from Newtown, Connecticut. So yeah, I do know what you mean, because we know those parents. We actually, you know, I say, have an acquaintance of one of those teachers. So, yeah, yeah, you're just

Scott Benner 1:00:31
from where it happens. Really does change how hard it hits you. Like, I'll talk to people I know that are from like, the middle of the country. You talk to them about 911 and they're like, well, it was, like, really scary and all, but like, it doesn't feel as real, because I don't know anybody was there. It's really interesting. You know,

Bridget 1:00:48
that's, I think that's more than interesting. That's fascinating. Yeah,

Scott Benner 1:00:52
I'm talking about back at the time, I'm sure now, with distance of time and years, they understand the impact of it. But right, as it happened, they were just sort of like, oh, it's weird. Like, a, you know, I mean, like, it hit them differently, I

Bridget 1:01:04
think, yeah, a news story, as opposed to, yeah, a

Scott Benner 1:01:08
thing that, like, where. So I could have walked out in my backyard and I could see the column of smoke for like, days, right?

Bridget 1:01:13
Yeah, yes, yeah. I say exactly. And so to talk about this and to bring it to parents attention to then relay it to the school administration. Hopefully will, will never have to be put into practice. But I know that I feel better with more information. I want to know as much as I can, and then potentially cherry pick what I actually apply, but I want all the information to then decide what I'm going to do with it, and so that, in particular, in that sort of situation, I actually, I say, put in the same category as the advice that I tell my kids, they are never allowed to be the first one out the door for a fire drill. I said, You are never going to walk out first. You always be the last one out, and it's for what we've learned through actual not drills, but active shooters, and I'm only going to be as prepared as I possibly can for the best outcome that could possibly be through all things in my control.

Scott Benner 1:02:22
Well, listen, I You're gonna hear an episode on the podcast next week that's gonna absolutely fry your brain for your preparedness. Because, okay, a woman came on to talk about how her kid left their her phone in the car before she got on the bus, and so the mom had to call head to the school and say, Look, until I can get the phone there, just go to the 504 plan, handle everything with shots and etc. And by the time she got to the school, the school nurse had given her daughter 150 units of insulin. No, yeah. Why do you hear it?

Bridget 1:02:53
It's crazy. Oh, man, I say I can't, I can't wait. I'd ask you what happened, but that'd be some major editing for you. Yours

Scott Benner 1:03:01
will come out way after theirs. But I don't want to give it up for the people who are just hearing it right now. Yeah, yeah, no problem. But I'll tell I'll tell you, if you're listening and you're interested, you are looking for episode. Give me a second. You were looking for episode 1323, it's called school nurse mistake. So

Bridget 1:03:19
unbelievable. We actually had an instance at summer camp this year where there were multiple t1 DS in my daughter's camp group. The wrong remote was used on the wrong child. So I received a text message that said, Liza passed down snacks today. And I said, No problem. Nothing needed. And then about 20 minutes later, I got a phone call that said, we made a mistake. We actually dozed her for a friend's snack count, but your daughter did not actually eat anything.

Scott Benner 1:03:47
Oh, I have another episode coming up about a camp. Oh, my God, where the kid was crying for three solid days sick in DKA because they weren't giving her enough insulin. Oh, boy, she finally just cried so much. Somebody actually let her somebody called her mom for it, because they weren't supposed to call the parents, yeah. And then later, in hindsight, they find out that, like every stop gap that was in place at this I'm not going to say the name of the camp, but respected diabetes camp, okay, oh boy, okay, every stop gap they had in place to stop these things from happening failed all the way straight through. Oh, wow,

Bridget 1:04:20
that sounds like an expensive lawsuit. Yeah, I don't think that's

Scott Benner 1:04:23
what they're gonna do, but, like, but bear there that happened. So the kids running around like, you know, with, like, ketones and super high blood sugars and all this stuff, sick and crying and and they only like, and they weren't gonna let the kid call, like, she's, like, begging to talk to her family, and they won't. They like, no, it's against the rules.

Bridget 1:04:43
Oh my gosh, I couldn't imagine that. Yeah, yeah.

Scott Benner 1:04:47
So I like everything being written down and planned out and but at the end, my expectation is you're in this on your own, and you you should know the things that you need to do, and it sucks because you're talking about young kids. It's, you know, yes,

Bridget 1:05:01
exactly. And training my kiddos, teachers or camp counselors, whoever the grown up is in charge, I tell them, 504. Is a side. Paperwork aside, these are the two takeaways. One, how to read a Dexcom. If you can interpret that arrow trend, then you can be ahead of any potential urgent situation. And then two, how to treat a low? Treating a low is more, I'm going to say, important, or has to happen quicker than correcting a high. And so with those two takeaways, hopefully families can feel a little more comfortable when their kiddos are away from them, whether they're at school or whether you have a new babysitter, you know, or whether you know. I am trying to think of a different like caregiver situation, but with those two takeaways, how to read a Dexcom and how to treat a low there's a lot more confidence that comes that grown up or the caregiver can have to know that the greatest medical intervention that the neighbor across the street could do while my kiddo is playing in their backyard is give them a juice box. Yeah, it's easy and comforting, as opposed to anything with pokes, needles, syringes. Yeah.

Scott Benner 1:06:16
I would also like to say that my expectation is in most of these situations, it's going to go well enough that you're not going to be in a dangerous situation. But yes, I mean, I put a fairly thoughtful 504 plan in place when Arden started school and they said, No, this is the 504 plan, really, these five bullet points that I actually said to them at what in a meeting. I was like, if you think those five like ideas are going to keep her alive, I'm like, You're You're out of your mind.

Bridget 1:06:49
Oh my gosh. How did they react? What was their response? I

Scott Benner 1:06:53
was a pain in the ass, right? But that's how I felt to them. I made them like, call her down before recess in kindergarten every day and test her before she went out. She didn't have a CGM, like, she would just get a meter test before she went out, that kind of stuff. Yeah. And then after they tested her, they had to call me to decide what to do next.

Bridget 1:07:12
Yes, because we text throughout the day with our school nurse. And

Scott Benner 1:07:16
this I'm old. This was before texting, even though four kids at a store yesterday said, I look like I was in my mid 30s, but that's another story. Yeah. And then I had a timer on my phone because I and if my timer went off and I hadn't heard from her, that was it was beyond the time before recess, so yes, we got behind beyond the time. I called the nurse's office. I've told the story before, but the nurse picks up the phone. I said, Hi, it's Scott. And she goes, Oh my god, Arden, and hangs up the phone. Yep, I get it. She calls back minutes later, hey, I got I just got Arden off the playground. We missed her. You know, some poor kid had like, a problem, like, literally, like, a problem with his heart, and they had to, like, they had to do something. And so it happened right at the same time that Artem was supposed to get on recess. So the nurse never called down to the room. You would say, Well, why didn't the teacher send her? She sends her every goddamn day. How come not because that phone call didn't come so she didn't do it right? And why didn't Arden say something? Because she's five, and so the nurse runs out on the playground, finds Arden at the top of the monkey bars with a blood sugar in the 50s, oh, my goodness. And brings her in and straightens her all out and everything. And yeah, I took that moment, I actually got dressed, went to the offices where the administration was, sat outside of the Office of the Superintendent, and I said, I'm here to speak with the superintendent. They told me I didn't have an appointment. I said, that's fine. I'll wait.

Bridget 1:08:46
I waited in regards to potential homicide.

Scott Benner 1:08:50
So I went in, I laid out everything I had tried to set up with this 504 plan. I actually tried to set it up the year before Arden started, because I knew it was going to be a thing that kind of laughed me out of the building at that point. And I said, this is what I want. Here it is. And it was nothing was crazy. And I said, and it seems like maybe there should be an aid like that, you know, looks in on Arden at certain times, because obviously her teacher can't handle it, and the nursing staff might have a different problem, right? And he said, we can't afford that. And I said, Do you think you can afford it? More or less me suing you till the end of time? And I said, because I'm not a litigious person, I've never actually been involved in anything like that. I It would be my, my joy of my life, to not be involved in anything like that, right? I said, but if you kill my daughter, I have to assume that the sadness and grief that I will feel will only like I'm doing something valuable with it, if I just keep going till I put Arden's name on the front of this building, and this is the Arden Benner high school one day, and I have all of your money and none of you work here anymore. And I said, because I can't imagine that I'm going to be able to get up and focus. Focus on anything else, or you could just pay the aid, and then it was all fine forever and ever after that.

Bridget 1:10:05
Well, I don't know how it compares, to make you feel good about it, or that much worse, but I'll tell you at my kiddos elementary school, when Teddy started there last year in kindergarten, he was the third diabetic within the school. So there were three. And now this year that my daughter's there, there's four. Well, because there were three last year, the school did hire an additional part time nurse, and that nurse was at the school from 10 until two, because that runs the gamut of NAS times through all lunches,

Scott Benner 1:10:39
and then probably a little bit afterwards, after some of the Yeah, actually, it does actually

Bridget 1:10:43
cover Yeah, a little bit afterwards. The

Scott Benner 1:10:46
right thing to do in that situation, like you have a responsibility, you need to have a staff person there to manage that responsibility. Yes,

Bridget 1:10:53
and their numbers are tracked. And now all these details I'm giving you, I'm not saying they're directly in the 504 but I'm referring to it because this is how we manage that the day to day routine. I really hope that the day to day is boring, and so we spend the majority of the 504, on those potential situations, or emergency situations or field trips, you know, like something that's an anomaly, but talking about these details and referencing what we do with my kiddos, I hope we'll just help other parents. And so there is an actual school nurse iPhone, and so the nurse has all four diabetes on that school phone, so she doesn't have to follow on her personal phone, you know, and basically keep it within the four walls of school. We text when they arrive. I say they're in. We text when they leave, and I say I got them so that she knows when she's, quote, unquote, on and off the clock with my kiddos in particular, and that is how we best keep them safe and healthy just real quick. In regards to the field trips, we have a written in that I, as the parent, either myself or my husband, we have the right to first refusal to not go on a field trip. It's always assumed that we will be attending the field trip. My first grader, he told me he didn't want me to go with him this year, and so I didn't, but that meant that the part time nurse did go with him, because he always has to have someone, obviously a grown up, to take care of him, and so that instance is also written into the 504 I really could talk to you forever, Scott. I feel like it's the best celebrity encounter of my life. That I just want to mention one other thing in the regards the 504 plan, as we talk about lockdowns on different drills. There, typically with schools, is an evacuation site. And when I talk to other parents about this, they are clueless, and then so appreciative. If there were something horrible that happened at a school and they needed to remove the children, not just, Well, yeah, like if there were a true fire, not just a fire drill, but a true fire. And then you gotta go pick up your kiddos. There's not gonna be a filing through of the school grounds, find out where that evacuation point is for your child in their school, and potentially put a go bag at that location for our kiddos. It's like a furniture store, and so I have a mini backpack there, you know, talking with the store manager to say, you know, this is my kids names. This is where we can put it. And so if there is an emergency and there were a fire at my kids school, I could even get in touch with the local fire department to say, Hey, I know this school is evacuating. To the furniture store. Please make sure whatever is needed, you know. And again, that's if there isn't a grown up around or something, can't

Scott Benner 1:13:46
I think somebody's gonna think that sounds crazy, but that seems brilliant to me. Yeah, that's awesome. You don't know until you don't know, Yeah, isn't that interesting? Oh, what a great idea. Oh my gosh. So

Bridget 1:13:57
that's just one other important point, yeah, that I wanted to mention, because again, the day to day, hopefully, is boring, but there are those other situations that if we are the if we are over prepared, we can feel that much more happy and secure. Now,

Scott Benner 1:14:12
I mean, I've told people every year through entire time Arden was in school, like, I know this all probably seems like insane. I was like, but we're not prepping for the things we expect. We're prepping for the things we don't expect. Yes, yeah, it's the truth. Yeah, yeah, most of it's going to be okay day to day. We've got that all kind of worked out already, like we're trying to be ready for the things that you know are just going to surprise the hell out of you. Yeah, yeah, that's it. Yeah. I'm glad you think of it that way, and I like you've raised an attention to it too. Thank you. We were trying Now you sound completely reasonable till you said I was famous, and then that part you sound you sound a little silly, but, but other than that, you sound perfect. Got it? That's very nice of you. Okay, listen, I this was terrific. Did we not talk about anything we should. Have

Bridget 1:15:00
we touched on so much even drying parallels, Arden, to both of mine kiddos is radically helpful for that day to day, what wool and T 1d looks like can look like as they grow up, and it's wild for me to, you know, think that far down the road with my kiddos, as you know, like I'm texting with the nurse right now about snack time and who needs what. So it was really great to talk with you.

Scott Benner 1:15:32
Oh, I appreciate that so much. I enjoyed it as well. Well. Thank you so much. No, I appreciate you doing this. Thank you. Will you hold on for a second for me,

Speaker 1 1:15:39
absolutely. Thanks. This

Scott Benner 1:15:48
episode of the juice box podcast was sponsored by us, med, us, med.com/juice, box, or call 888-721-1514, get started today with us. Med, links in the show notes. Links at Juicebox podcast.com. This episode of The Juicebox Podcast is sponsored by the ever since 365 CGM system, one year one CGM. That's the ever since 365 learn more and get started today at ever since cgm.com/juice box. Hey kids, listen up. You've made it to the end of the podcast. You must have enjoyed it. You know, what else you might enjoy? The private Facebook group for the Juicebox Podcast. I know you're thinking, uh, Facebook, Scott, please. But no. Beautiful group, wonderful people, a fantastic community. Juicebox Podcast, type one diabetes on Facebook. Of course, if you have type two, are you touched by diabetes in any way? You're absolutely welcome. It's a private group, so you'll have to answer a couple of questions before you come in. But make sure you're not a bot or an evildoer. Then you're on your way. You'll be part of the family thinking about getting an algorithm pump. Don't know where to begin. Juicebox podcast.com up in the menu, click on algorithm pumping, and you're going to get a long list of a lot of episodes that will help you to understand better Juicebox podcast.com Find algorithm pumping. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com, you.

#1387 Type I Don't Know

Derek was diagnosed as T2 and then T1 and then T2 and maybe T1.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Welcome back to another episode of The Juicebox Podcast.

Today. I'm speaking with Derek. He was diagnosed as a type two originally, then he was re diagnosed as a type one, but then again, re diagnosed for a third time as a type two, but then he went into DKA after ACL surgery, and they think he might be a type one. You're gonna find out when you listen. It's a lot. 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 healthcare plan or becoming bold with insulin. Hey, if you're enjoying the podcast, there's a couple of things you can do that would really help subscribe or follow in an audio app, like Apple podcast, Spotify, or something like that. You can follow the private Facebook group. You can follow the public Facebook page. You can follow on Instagram, on Tiktok, you know, on social media in general, you can tell someone else about the podcast that would be huge, but mostly subscribing and following that's the way to help. Also, if you need something that we have in an ad, like an omnipot, or, I don't know, ag one a cozy Earth sheet. Doesn't matter to me. If any of that stuff seems attractive to you, using my links or my offer codes really does help support the show. Thanks so much. I'm gonna get you to the show now.

Today's episode is sponsored by Medtronic diabetes, a company that's bringing together caregivers and parents of children with type one. Later in this episode, I'll be speaking with Sarah, Mom of Jackson, who's an active 10 year old boy with type one Sarah is married with two children and a recruiter at a law firm. Thanks to Medtronic Sarah and her family found the support of the Medtronic caregiver community valuable in their journey. 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 too. So 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.

Derek 2:13
My name is Derek. I have been a diabetic since August of 2009 I have spent the majority of my life and my career in the banking industry, and I have a wife and two boys. I love being a diabetic in the sense that it's a mystery that I always have to figure out, but at the same time, it is somewhat of an emotional weight that I've also had to deal with. And I guess I like to talk to others about being a diabetic as well.

Scott Benner 2:53
Oh, they are in the right place. So 15 years ago you were diagnosed. But How old were you? Then

Derek 2:58
I would have been 2929 39

Scott Benner 3:02
Okay, so you're in your mid 40s now, right. Okay, any type one in your extended family,

Derek 3:10
not at the time that I was diagnosed, my mother, I want to say, about a year after I was diagnosed, she was diagnosed with type two, and then after no medicine worked, I believe she was re diagnosed as a type one band

Scott Benner 3:27
wagon jumper. Okay. How old was she when that happened,

Derek 3:32
she would have been around the age of 70. No kidding, 6870

years old, yep. How long ago was this? This would have been 2018 I believe she with us still.

She is, yes, fortunately, she she has a a crazy story about how she discovered on accident through a completely different issue that she had several aneurysms that affected her heart, in and around her heart, and she had to have emergency surgery to to get rid of a couple of aneurysms that the doctors still to this day don't know how she made it, because she was just that close.

Scott Benner 4:18
It was so bad. Did they tell her were, were those aneurysms from diabetes? Or did they not say they said it was auto immune? Yeah, the aneurysms were, yeah, it was. It was an offshoot from something else that was auto immune going on with her. So, yeah, I'm asking the internet, hold on a second. Yeah, auto immune aneurysm occurs when the immune system mistakenly attacks the blood vessel walls. No kidding, yeah, leading to inflammation and weakening the vessels. Yep, vasculitis, yeah, that's what it is. What they called it, huh? Sim. Symptoms of an aneurysm caused by an autoimmune inflammation can vary depending on its location. Common symptoms include localized pain, fatigue and sometimes visible pulsations in large arteries. Oh my gosh, an aneurysm ruptures. Yeah, we know how that goes. Wow. Yeah, no, yeah,

Derek 5:14
the doctors, yeah. The doctors pretty much said, like, all she had to do was just like, cough the wrong way. And the aneurysm could have completely, you know, exploded. The aneurysm was big enough to the point where it completely filled her chest cavity before they did surgery. So

Scott Benner 5:33
pain is how she figured it out. Yep,

Derek 5:35
little bit of pain. However, she went into the hospital for something completely different. They took like X rays, and the doctor comes back and says, Hey, did you know that you have an aneurysm at, you know, close to your heart. And at the very, very top of the X ray, there was, like this, little like aneurysm, bottom of an aneurysm that showed and that led to follow up appointments with a heart doctor. They did more tests, and they were like, oh, boy, you need to, like, go to the hospital, like,

Scott Benner 6:10
right now. So are you saying that the X ray tech caught it by mistake, just a little piece of it? Yeah? Wow, that's some good luck. Yeah? Well, I have to tell you, Derek, I seriously. I think I say this more than I expect to, but you've come on here and said something I've never heard before, and I think you're going to say something later that I've never heard before as well. So this is interesting. Okay, so your diagnosis happens. How? What do you what are your signs? What gets you to the hospital, etc?

Derek 6:39
In the summer of 2009 I started drinking a lot of water, like excessively, and then I started getting cloudy vision, and from there, just kept on getting worse and worse and worse, and then the extreme tiredness. All the time, I would go to work, come home, eat dinner, go on the couch, sleep all night long, get up, go back to work. That that process happened for probably two to three weeks, at least on end. And then I went to the doctor, and I said, Listen, this is what's happening. I want some blood tests. And said, Fine. Then Several weeks later, after I called my doctor and said, Hey, where are these what's going on? And the nurse said to me, listen, we'll have the doctor call you back, we found something like, okay, great. So yeah, the day before I had an appointment with my doctor, I was in a music studio to record a project with a singing group out of my church. I come out from about a six or seven hour session, I find out that my mother is in the hospital with something that almost killed her. I think it was an infection that was close to her brain, so they basically just caught that in time. Came home that that following morning, I went out to my car, found out that my car had gotten broken into, and I had unfortunately left my wallet in the car, and someone took my wallet, tried to charge about $10,000 worth of stuff on it, got away with a lot of it. And then I went to my doctor, and I'm telling him everything that happened to me that day. He's like, Well, I hate to make your day worse, but you're a type two diabetic.

Scott Benner 8:37
I don't even know what to do, other than laugh. That's horrible. No,

Derek 8:41
I look back on it now and it's, you know, it's like, how do you explain? I don't want to turn into one of those people that just, like, tells all of your problems to somebody else, and they go, okay, and like, never, they never want to deal with you again. But it's almost comical, some of the things that, like my family has been through health wise, no kidding, you know. And so from that point on, like I didn't anything that my doctor said after that night, I asked him, like, three times, are you sure I'm a diabetic? And he said, Yeah, my fasting blood sugar was 303. And I have a sneaking suspicion that I probably had some form of diabetes, probably back from my college days when I was in college, because I just remember going to, like a weight room in college, going around campus, and just after, you know, physical exertion, just becoming really, really, really, really tired. And after certain eating, certain things, just becoming really, really tired to the point where I was like, I had to lay down. So that's. That's the diagnosis story. Wow,

Scott Benner 10:01
geez. Getting older means a world of change, but some things still stay the same, like being at risk for type one diabetes, because type one can happen at any age. So screen it like you mean it, if just one person in your family has type one, you're up to 15 times more likely to get it too, and 50% of type one diagnoses happen after the age of 18. So screen it like you mean it type one diabetes starts long before you need insulin, and one blood test could help you spot it early and lower the risk of serious complications like diabetic ketoacidosis, known as DKA. So don't get caught by surprise. Screen it like you mean it, because getting answers now can help you get prepared. The more you know, the more you can do. So don't wait. Talk to a doctor about how to get screened. Tap now or visit screen for type one.com, to learn more. Again, that's screen for type one.com and screen it like you mean it. This episode is sponsored by Medtronic diabetes. And this is Sarah. Sports

Speaker 1 11:11
are his life. He was nine years old. He was just starting to develop his own personality and his own passions and his own independence, and instantly we were afraid that that was going to be taken away. It was a very scary time for me. I would say probably the first couple weekends, there was a lot of fear about what happens if I go low. Obviously, now that we're on the Medtronic technology, what we do managing his diabetes during athletics, has changed drastically. The Medtronic technology that we are using has almost eliminated the fear I have while my child is playing.

Scott Benner 11:44
As far as community goes, have you met other people with diabetes? What's some good advice you've gotten from them? I

Speaker 1 11:50
have met so many people with diabetes. This summer, I had the opportunity to meet others that are using electronic technology, and I feel like we have built such a strong connection because we speak the same language, we don't even have to say what we're going through. I have good friends that are Medtronic mamas that I can reach out to that have been incredibly helpful, and then our Medtronic rep has been phenomenal

Scott Benner 12:18
to learn more about the Medtronic champions community and to find helpful resources and tips for caregivers and families, visit Medtronic diabetes.com/parents-caregivers

Derek 12:29
how do you begin

Scott Benner 12:30
to manage 15 years ago, it's right on the cusp of like, did they talk to you about a pump? Was it MDI? At first, they

Derek 12:38
gave me a meter and gave me Metformin, and said, Let's see how you are in a month, because they thought you were type two, yes, okay, right? And I went through, like, the beginning stages of metformin, how it's wonderful on your GI tract, and it lowered my blood sugar a lot, the point where I was mostly in the upper one hundreds. At that time, I went to diabetes education classes about a month and a half after I got diagnosed, I think honest to goodness, Scott, like the one thing that I took away from that whole thing, more than my carb counting, and like everything else that they tell you there is, like, if you don't treat this thing the right way, you're gonna lose limbs. And so for, you know, the next year to year and a half, I'm almost, like, starving myself, because I'm not, like, I don't want to lose limbs. You know what I mean? So it was more out of like fear than anything else, because it's pretty shocking when they tell you that, yeah, sure, I continued for the next couple of years where I was on an increasing dosage of metformin. Switched doctors because I wanted to go on something else, and my doctor retired, so this new doctor gave me Januvia, I pretty much like it had no effect on my blood sugar. I was in the low two hundreds all the time. And then I was able to go to another doctor's office that was in the basement of the my workplace, okay? And there was like a team of doctors that worked there, and they were like, listen, we gotta get a hold of this thing. Because my a, 1c, was anywhere from probably six at good times to maybe like eight or nine in those in those years. So then I go to this new office that's in my workplace, and they gave me farsiga. It worked at first, but. You know, I just again. I could never. I had some side effects from that where I felt like I was dehydrated, a lot. It never, unfortunately, it didn't bring my blood sugar down to where it should have been. Well, what it is right now, tell me if I'm going too fast or not, or if you have so,

Scott Benner 15:21
if you think you had issues all the way back to maybe college even, and they're like treating you like a type two for years, right? And so you're in, I mean, we can surmise from this, you're in the middle of a 10 year long process of like Lata, just a very like type one and a half slow onset of type one diabetes. Is that what you think looking back?

Derek 15:44
I think so, but that's another story we can develop later on in this conversation.

Scott Benner 15:50
So, yeah, so they're giving you other drugs that are helping a little, but then not for long, it seems like, yeah,

Derek 15:56
okay, yeah, Scott, when I look back at it, I think this is a an important point to make with all of this, is every doctor that I saw was a GP,

Scott Benner 16:11
so they never said, go see an endocrinologist. No, no, I,

Derek 16:15
I think, I think I had a doctor along the way that said we're gonna have to put you on insulin. And it was kind of said with like, a frustration, like, I can't believe you're not compliant. Yeah, you're not doing the things that I'm asking you to do. And he was the guy who said, Listen, if you gotta, you gotta start eating, right? And I, and I was, you know, for the most part, I was, and, you know, he's, you know, at appointments, he's saying, Hey, listen, you know, if you go to a Christmas party, for example, instead of eating six cookies, just eat three. Were you eating any cookies? No, no. I, you know, I'm, I'm more of like a bread eater than, like, pies and cookies and cakes and sweet things. So

Scott Benner 17:08
when they say that to you, do you speak up and say, I don't eat the way you're saying? Yeah. And do you get a response

Derek 17:16
most of the time, I get just like this blank stare like, well, obviously you're not doing what, what we're telling you to do. Okay, between the team of doctors that I saw when I started on far Sega, and the previous doctor with genuvia, and then my first doctor that prescribed Metformin, I just I wonder why no one said, Hey, let's try insulin, you know, or let's, let's go to an endocrinologist.

Scott Benner 17:49
Well, I mean, you can see, but I don't know why they don't say go to an endocrinologist. But when they think they're doing they're telling you the right thing, you're ignoring them. That's why your a 1c is higher, right? So you know, if you're not going to eat, right, then we're going to have to give you insulin to bring down your blood sugar. Because you, you know, you can't stop with the cupcakes Derek and so, like, that's the, that's the progression that they go through, not I wonder if I'm misdiagnosing this or right? If maybe I'm not the right person to be involved in this, right? Yeah, right. It happens. So, I mean, dark, it happens to so many people. Yeah,

Derek 18:22
my wife and I often have a conversation about this, based on what has happened in the last couple couple of years that I guess we'll get to but I just, I feel like, you know, when people say that there's nothing wrong with our healthcare system, or we've got the best healthcare system in the world, like, go to another country, and that, to me, likes comes from someone who has no health problems. You know, usually does not. They've never had

Scott Benner 18:55
to have one of these conversations. They're like, everything works great for me. You

Derek 18:59
know, honestly, along the way for me, I'm a very, very optimistic person. Anyone who hangs around me will tell you that, and I'm almost at the point previous to the doctors that I have right now, I just felt like the harder thing to do was to fight doctors and the healthcare system, rather than diabetes itself.

Scott Benner 19:24
You know, tell me why. Though, like beyond this last story, what else are you find yourself fighting with them about you

Derek 19:31
ask for blood pressure medicine to be filled three times, and you go without it for two weeks because no one can figure out how to put the order through. You know, I have friends who have requested refills for certain things and and it's we're going on, like, a month and a half, and they just have to pay for things out of pocket. Here's a good advertisement for the podcast, like, I'm going to talk about the. K I did not know that that was even a thing before it happened to me, and I learned about it mostly through the Juicebox Podcast. No doctor had ever sat down with me and never explained Hey, listen, if you see these symptoms, you need to get to a hospital like right away, until I had, you know, maybe, like, the fourth or fifth doctor, they never really went into what you should stay away from, or what you should eat, not that I'm expecting, like, a whole menu to take home or whatever, but there was never a basic conversation with a lot of these doctors about what to

Scott Benner 20:41
do. So they just told you count carbs, put in the insulin. That's it. Yep, yep. That's it. No idea that, like, this food might be more difficult on your blood sugar than this food, or, you know, you might need a different Bolus thing strategy if there's, you know, this paired with that, that kind of stuff, yeah,

Derek 20:58
yeah. No one, no one ever explained Pre Bolus thing. I discovered Pre Bolus thing through your podcast. Listen, Derek,

Scott Benner 21:05
I'm going to tell you something. I'm aware of this. Okay, I'm not. This isn't lost on me, but it is such a basic idea. I take that you learned it from here, and I think that's great, and I think you're not the only one. I think there's 10s of 1000s of people who have learned it from the podcast, which is great, but it's not like, I'm not over here talking on some high level, like, you know, like the credit I get is just not commiserate with the information that's that's shared. You know what I mean? Like, I'm just like, look, one day I noticed that if I, you know, put my daughter's insulin in a little sooner, it seemed to work a little better. And then I, you know, worked through the steps of that. And here's the way I've figured out how to describe it to you, yeah, yeah. And I'll take all the credit that's due on that, but at the same time, your point, I think, is, how is that even necessary? Like, how is it possible that I'm getting this many kudos over saying, Hey, you should time your insulin? Well, yeah, that's it. It's almost saying, you know, yeah, to

Derek 22:00
go back to your point about stop eating cupcakes. Derek, like one of my doctors was like, Hey, we got to get you into a diabetic nutrition class. And I told the doctor, I said, Listen, I've already been through two of those before. My experience. I don't know about other places, but the I've been to nutritionists at two different practices, and both of them, like did not make any distinction between good carbs bad carbs. What affects your blood sugar more than this and that just carbs. And here's a recipe, and that's it. So I said to this one doctor. I said, Okay, I have to see how much it's going to cost. And I called my insurance company at the time, and they're like, we're not going to cover it

Scott Benner 22:50
to see the nutritionist. Yep, yeah. See what you're caught in is the it's the hey, this person's a 1c. Has been over this for so long, it tells me now to recommend to send them to a nutritionist. You should see a nutritionist, and then the nutritionist goes and does what they do, you know. And by the way, they're great doctors, they're great nutritionists, but if you don't bump into them, then this is the process you go through. Then the nutritionist says some right exactly half ass stuff to you. They're like, Here, try this recipe. And you're like, Okay, great. Meanwhile, you're walking around the back of your head. You're like, I apparently I eat way too many cookies. But I would imagine at some point you thought I did have a cookie once. Like, is that too many? Am I doing? Like, you know, I mean, like, it just Derek, you know what you're describing, right? Yeah, you're describing the fragility of people and their inability to do the things that they've been tasked to do, yep,

Derek 23:42
yep, like my mother, just not to belabor this. But my mother has been to a nutritionist. He's a nutritionist on on a regular basis because she feels more comfortable with this person at the office where she sees her endocrinologist. This person told her, you can eat whatever you want as as long as you cover it with insulin, right? Okay, for some people, you know, certain things may not bother you, but I just, I can't ever imagine telling someone, Hey, eat whatever you want as long as you're in some insulin covers it like so

Scott Benner 24:20
you know what that is, though, dark, like, it's their platitudes, right? They're like, they're, they're surface level statements, and it's not for a bad reason. Like, I can make an argument to tell somebody that, right? Like, because what they really mean is that diabetes is, in your situation, a lot about making sure that you have enough insulin to cover the carbs that you're eating, and they don't want to make people feel restricted. And I understand that even because, you know, I think probably what they've learned is, is that these people have just been knocked over with a new diagnosis. It's already bad, and if you make them feel restricted, they might run the wrong direction and just not do anything. Yeah, so let's drive home insulin covers carbs, which, by the way. Okay, I think that that is the core of how you manage a good a 1c right? Like, sure, there's more to say after that. Like, you shouldn't eat really terrible food. Yeah, right. But I've learned making this podcast, and I think probably the doctors have learned, and everyone else, when you start telling people how to eat, you get involved in a very contentious argument, yeah, you know. And so maybe it's just like, I can't get them to do everything exactly right or exactly perfect for their health. So let me just make sure that this, because I have to tell you, like, that's kind of where I come from, which is like, I don't I can't tell you how to eat, meaning you're not going to listen to listen to me, even if I did, and so let's at least make sure that your blood sugars are stable and in range by using the amount of insulin that is required by the food that

Derek 25:50
you're eating. Yeah, yeah. I kind of come from a family where we speak plainly and truthfully, even if it hurts, you know, I definitely get that. You don't want to upset people that much. You have to talk the truth, right? Yeah, in some way.

Scott Benner 26:13
Well, may I say this, and I don't disagree with you at all, but if we're caught in a situation where we can't get a doctor to say the right thing, or a nurse to put in the right, you know, blood test or or, you know, medication order. We also have to, I think, recognize that as patients, we're also people with our own frailties and shortcomings. And I mean, that's where this problem is. Like my wife works in a job where she's told me that some of the biggest problems they have with drugs is that eventually people take them, feel better and then say, Oh, I don't need these anymore. They don't say, Oh, I only feel better because I'm taking the drug. So they'll get their blood pressure down, but not change anything else about their life, and say, Oh, my blood pressure is good, and stop taking their blood pressure medication. Medication, yeah, and people do that with, you see people with type two will do it. Type ones can't, because they'll, they'll die. But you know, like, you'll see type twos go my A once, he was great last month. So the next one we give away, and then we'll bring it back down again. Like, it's, it's thought of like, for some people, it can be thought of like that medications, that's one of the problem. Like, I don't know if anti depression medication, like, there's arguments about whether it's necessary for everybody that's being given to or not, but you'll see a lot of people be depressed, take the medication, say, Oh, I don't feel depressed anymore. And then the first thing they do is stop taking the medication, yeah, which might be the only reason why they're not depressed anymore. Like, I don't know, like, but that's the world the doctors are trapped in, yeah, you're trapped in a world where doctors don't seem to know what they don't know, and will if everything's not going exactly the way they think it's supposed to go, are very willing to blame you for something. Yeah, and you're you know, and they're stopped and trapped in a world where people don't listen to anything they say anyway, so they just assume nobody's doing anything. Yeah, yeah, true. It's a vicious, shitty circle, is what it is.

Derek 28:05
Yeah, yeah. I truly believe that the majority of nurses and doctors that I have dealt with over the years are great people, like they're doing God's work. However, when you run into someone in the medical field who doesn't care or just refuses to help, it kind of like makes you jaded a little bit about

Scott Benner 28:32
I mean, it has me, yeah, no, no, yeah, I'm with you. I'll go further and say I don't think anyone's trying to do a bad job, whether it's the person coming for the help or the person that's there to give it again. I just think this is what happens like I think people get tired. They things get repetitive. You know, their resources, their own mental resources, are limited. You know, the amount of time they have, or money or energy is limited that goes for the doctor and the person looking for the help, and everyone just sort of says the first thing that pops into their head, and then, you know, the doctor says something, and then you go home and forget it, or you go home and try it and it doesn't work, and now you think he's an idiot. I'm telling you, man, it's the model's bad, and it's not, it's not the healthcare model, it's bad. It's the communication model that's bad. Yeah, yeah. I mean, I put up an episode just the other day where this 19 year old girl comes on. She's got all these different problems, and her life is spinning out of control. Health wise. She's only in college, you know. And so I said, Listen, let's just take the hour go through all your problems, see if we can't figure out at least what's happening to you, and then maybe put together an idea of what to take back to a doctor, and we did that. Now I'm waiting to hear back from her, but you know, as we're doing this, she's, you know, she's been degrading for years, and no one's helping her. They just keep piling medications on her that are causing different issues, and then it just keeps. Anything like that, like nobody attacked the central problem, and she doesn't know how to attack it, because she's 19, and I think that's happening to almost everybody in these health situations.

Derek 30:10
Yeah, yeah, for sure. That's all, for sure. Sucks. It's, you know, it's sad to see. It's really, really sad to see, yeah, especially when the problem, in a lot of cases, is just so simple, just, you know, treating the root of the problem, rather than just, hey, let's throw more medicine at it. Yeah, no,

Scott Benner 30:31
that's definitely going to be what happens is, because someone's going to say, Me, using this girl as an example, somebody put on a proton pump inhibitor for stomach acid. And then that probably caused a B 12 deficiency, and she might have also been anemic because of that. Then they go, Oh, you're anemic. Take an iron supplement, which does not combat anemia. Very right, very well, right? And then she's anemic, and then she starts to feel like depression, and then they put her on an anti depression medication. I'm like, she get her iron up and see if she feels better. Like, you know, like, so now they've got her on a proton pump inhibitor. She's taking iron supplements, B 12 injections, antidepressants, like, blah, blah, blah, blah, blah. And I'm like, I don't know. Like, maybe you could have just tried to change her diet and see if you could have impacted the stomach acid without the proton pump inhibitor. Yeah. Like, it's just fascinating. You know what I mean? So, yeah, oh, for sure. But then I'll take the other side of it. The doctor could have put her on a diet, and she might have been like, Ah, I'm a kid. I'm not doing that. Like, who knows? You know what I mean? Like, dude, I don't know.

Derek 31:37
Well, you don't know why if you don't know what you don't know if you don't try it, right? Yeah, yeah. I don't want to steal my thunder for the future of this conversation, but like lately, I have been trying to eat as natural as possible while still going low carb. And I'm telling you, my numbers are outstanding, like, better than they've ever been since I was originally diagnosed.

Scott Benner 32:07
Oh, of course, yeah. I mean, the less you tax, like, the less you tax yourself with carbs. And you know is going to be, it's going to be less insulin that you need to use, right? So you're going to see fewer spikes at meals. You're going to see fewer lows from insulin like it settles everything pretty well for a lot of people. So well tell me about that. So when did you make the switch?

Derek 32:27
Let me continue with my personal story, because it'll it'll make more sense. I was on Fauci and for a couple of years, kind of had a one CS between like six and a half and eight. Never really got down where my doctors were comfortable with in 2020 I was having some issues with my right knee. I had injured it when I was in high school all these years, you know, with knee problems, and I finally said to my doctor, like, I need to go fix this. And he said, let's go get, you know, some tests done. And nurse called me back and said, we tested to take a look at, you know, your ACL, we figured out that you have been living at without an ACL for 20 years, and also I had some meniscus tears. Had that surgery done in February of 2020. Stopped far Sega. Continued taking FAR Sega, I think, like two days after two or three days after surgery. As a result of that, the doctors think that stopping it and restarting it threw me into DKA,

Scott Benner 33:50
stopping and starting the varsica.

Derek 33:54
Yep, you

Scott Benner 33:56
what else happened around that time, though, like, what other things can proceed an onset of type one, like illnesses, trauma, anything like that.

Derek 34:06
No, nothing. And and my blood sugar, like, about a week before surgery, was hanging around the mid one hundreds. So I can't say, you know, I was, you know, out of control. Necessarily. They think that there was some small side effect with FAR Sega, where if you stop it and then start it again, it puts you into DK, it's, it's, and it when it, when that happens, it's usually very, very, very fatal. So my my wife, rushes me to the hospital within 45 minutes, I went from like just casually throwing up to completely blue and almost dead. Fortunately, I went to a hospital that had, you know, great doctors and nurses. It got better again over the next couple of days. Saw an endocrinologist for the first time in the hospital, and she said, Listen, I've been looking at your numbers and your history, and it's apparent to me that you're a type one diabetic, and so in the hospital, I started insulin. I got a quick like five minute, you know, primer on what insulin is and what to do and how much to take with a sliding scale, all that stuff, and went home after a week and a half of dealing with DKA. Can

Scott Benner 35:37
I read you something very quickly far seega is not approved for use in type ones due to the increased risk of DK in the population. For people with type one diabetes, the use of SGL, 2t L, t2, inhibitors, like fast ecosystem should be done with extreme caution and only under close medical supervision. So yeah, you were on the wrong medication. Yep. Yeah, yeah.

Derek 35:59
After that, after I started using insulin, it was the solution that I had been looking for, you know, for what, 11 years or so, numbers were awesome. I think my a, 1c went from in the middle sevens to like 5.8 or 5.9 I finally found the solution where I could eat what I wanted, a little bit more than I had been eating before. My blood sugar was thanking me for being on insulin. It was, it was a relief. And then in right after that, right after I came home from the hospital, is when COVID started. I did not have an in office appointment to see my endocrinologist over the course of the next two years, they just said, Hey, listen, just have zoom meetings, and that's good enough for us. While I was in the hospital, they did encourage me to see an eye doctor, because they had noticed some inflammation in both eyes. I went to an eye doctor and they saw the inflammation and said, Hey, let's just keep an eye on this. But you know, you're good to go. Went home. In the following weeks, I had an appointment with a virtual appointment with my doc, my endocrinologist, and I said, Listen, I love insulin, but I'm like, gaining a massive medical weight. Like, I weighed about like 200 pounds, and in like, a matter of mere months, I was at like 215 you know, I needed help. So he was like, Okay, well, why don't we try ozempic? So I went on ozempic for about six weeks, and after week number six, I started having a lot of blood vessels breaking in my eye. Went back to the eye doctor, they said that you have retinopathy. I've had retinopathy. So ever since, maybe, like, I want to say, end of 2020 beginning of 2021, I've had treatments for retinopathy

Scott Benner 38:37
as well. Is that the lasers? Or how do they handle that needles? Yeah, which, oddly, don't hurt, right? You know,

Derek 38:47
honestly, a lot of people say that it hurts. It's more of like the doctor trying to keep your eye open. He's the bigger problem. The needle in, that's the larger issue. Yeah, yeah, yeah. It's straight out of a science fiction horror movie. But one of those appointments, when I was at the the the eye doctor, there was a massive jump in inflammation. He said, have you checked your blood pressure recently? And I said, No, not, not really. I just kind of keep track of my blood sugar. He took my blood pressure and didn't tell me what it was. And he's like, do you have someone to take you to the hospital right now? And I said, my wife is out in the car. Can this way? He's like, no. He's like, if you didn't have someone I would call an ambulance for you. So my wife drove me to hospital, and I waited to see someone you know, to tell me what was going on with, you know, my my blood pressure, and this is what I mean about like, the frustration about. Our medical system, right? I They, they triaged me, and my blood pressure was 235 over 140 okay? And then I sat in the waiting room for four hours before I saw someone. Doctor comes in. He's like, Hey, listen, we need to get this obviously, need to get this treated as soon as possible. Spend a couple days in the hospital. So all that to say, I just I wonder, like, the whole starting insulin thing, like, really pushed my blood pressure to where it should not have been, or whether that was a side effect of ozempic, or because I was eating everything that I should have, and my blood sugar was, you know, my a one, Cs were around, like the lower sixes. Did your

Scott Benner 40:53
blood pressure return without medication? Or did it need to be medicated? It needed to be medicated. Let's go back for a second to talk about the retinopathy. So you started a GLP, and then you had, like, a sudden improvement of your blood sugar stabilization, lower blood sugars. So that could lead to something, I think they call it, like early worsening of diabetic retinopathy. It happens like when the, like, the levels drop quickly after being elevated for a long time, and something about that abrupt improvement in glucose control can stress the the blood vessels in the retina, and that can lead to like new or, I guess, if you already had bleeding, increased bleeding. Yeah, one of the reasons why you they can't just blanket, get glps, you know, through the FDA for type ones. Because what about all those long term type ones who have had elevated blood sugars like you for a decade, right? And then suddenly we whip this on. Here you see this significant improvement in your blood sugar control. And then, you know, boom, you start seeing this problem with your retinopathy, so a rapid reduction in blood glucose can definitely temporarily worsen the condition. Instead of like, you would think, just like, better is better, but it it's not like because there's this this time where your body's trying to adjust. Now, how could that impact your blood pressure? Did they tell you the GLP had something to do with the blood pressure, or is that just your concern? That

Derek 42:25
was my concern, and I, I think the reason why I make that connection, too is because I never, like, even with the most basic, like the starter dose, whatever that is for ozempic, I just felt weird the whole, the whole entire time that I was on it, to the point where I told my endocrinologist, I was like, I can't, I can't do this thing anymore, like I would rather, like keep the weight on, rather than feel like I have just eaten Thanksgiving dinner every day, I have a theory that it's a combination between ozempic and insulin itself. Well, I can

Scott Benner 43:10
tell you this, that everything that I know about GLP and anything that I can pull up here in front of me while we're sitting here, would say that the GLP is going to lower blood pressure, not push it up. I mean, you might have been upset while you were on it, or not, like the way you felt, and been stressed or something the whole time, and that's completely possible, but I don't think that functionally, it would have made your blood pressure go up. Okay, so, like, nothing, nothing that I can see there, yeah. I mean, again, yeah, I'm a guy with a podcast, so yeah, grain of salt, moth, it doesn't make a ton of sense to me. So you felt so they put you on what they gave you, ozempic, so point two, five for four weeks. Right then at the fifth week she they put you to point five, yep. And you felt very full all the time. Were you going to the bathroom on a regular schedule? Yes, you are. You were. You were pooping. Okay, yep, that full feeling. Did you ever even get past the part where it didn't even feel like the food was going down when you ate it like my my food felt like it stopped in my chest at first. Does that description ring true with you, or you just felt very full in your stomach?

Derek 44:20
No, you're right. You're right. It it was weird. It was, it was like, I had all the symptoms of acid reflux without, like, without it feeling like I was it

Scott Benner 44:33
was burning. It wasn't burning. Yeah, no, yeah. It slows your digestion down pretty significantly, yeah, if you keep eat like, did you eat through it? Meaning, like, did you take in a the same bulk of food that you had prior? Yeah? Yep, tell you. That's why you felt like that. Yeah, for sure. Yeah. Did you lose any weight?

Derek 44:52
It was more than just a like, a fullness, though it was almost like a like, it made me nauseous, to the point where. Are you are on the verge of being sick all the time? If that kind of makes sense, I just I did not like the experience. No,

Scott Benner 45:07
no. I've heard that from people, but often those people then tell me that they didn't decrease their eating yet. So it's slowing down your digestion, but it had an impact your hunger, yet. Is that about what was going on. Do you think, yeah, yeah. So, yeah, well, that makes sense to me, yeah, was it helping your blood sugar? No, it was not. You didn't notice any, well, any different needs at all?

Derek 45:32
No, you know, I was eating the same and I my my endocrinologist was like, listen, just be patient. And, you know, eventually, you know, we got to get these blood sugars down a little bit more. You know, I kept on waiting for things to get better, and just never happened.

Scott Benner 45:49
Yeah, no, I don't think you i I'm Listen again. I want to say not a doctor, not advice, but I think if you would have eaten, like, physically, less food, you might have felt better, and then maybe you could have stayed on it longer, until it actually started impacting your hunger. And then maybe it would have, like, cascaded in a better way for you. But I mean, if you were having that much trouble with it, then you know, obviously you know feeling better is the right thing. Did you not have you found another way to lose the weight you went low carb. Did that help? Yes,

Derek 46:23
that definitely helped. And that might be a good segue into, like, the the what

Scott Benner 46:29
I was thinking when I said it.

Derek 46:33
I got to the point where I was like, Okay, well, insulin is the number one thing that will keep my blood sugar where it needs to be. I just need to, you know, like alter what I'm eating, like make different choices, you know, and be a good diabetic. At the end of 2021, 2020, beginning of 2022, I started finding myself. So let me back up. I was on a sliding scale. At the time, when I first started with insulin, I was on a sliding scale of five. And so, like most meals, you know, I would take, maybe, like, I don't know, eight, 910, units. At the end of 2021, I started noticing that I had to take a little bit more insulin than than normal, which I know you talk about like there's a honeymoon period with, you know, insulin, and you know, you may need to use more after, you know, a little while after your diagnosis. But I started noticing that, like the insulin, it was like eight, 910, units did not do anything dark.

Scott Benner 47:47
It sounds to me like you were on like, a decade long, slow drift into type one diabetes. Yeah, yeah. Well, eventually your needs went up to because your beta cells probably stopped helping. That's another that's another point that we can get to as well. So pretty much over the course of the next year and a half, every time I saw

Derek 48:10
my endocrinologist, she was like, okay, more insulin. All right, let's bump it up. I had to switch endocrinologists because I had an issue with prescriptions not being filled by the office great endocrinologist, but the office just wasn't helping out. So I decided to switch something that was closer to where I worked. Anyway, I saw a new endocrinologist, and he's like, okay, let's just bump up the amount of insulin. And sometime in the middle of 2022, for meals, I was taking between 40 and 60 units of insulin, okay, my body, I felt like, was shutting down like now, instead of being on one minimum dose for blood pressure, I had increased to the max dose for four different blood pressure medicines. I'm using between 40 and 60 units of insulin per meal. And I told my wife, I was like, I feel like my body's like, giving up. Like, I honestly, Scott, it was at the time where we were seriously thinking about putting a will together, you know, really, you know. And I was like, okay, better get that done. I felt like I was in a slow motion train wreck. I got to the point where, like, it was difficult for me even to walk up the stairs in my house, all of my muscles hurt, like I could not do anything. It was almost like the reverse was happening, where, before I got diagnosed, I was tired all the time, except I didn't have the cloudy vision, but I was dreaming. Drinking a lot of water, like nothing, no medicine, even the insulin, was working for me, it just felt like, just felt like my body was giving up. So one Saturday morning, I'm sitting there in a chair, and admittedly, you know, I'm, I'm, you know, in touch with my faith, and I prayed, and I said, God, I need you to, like, give me answers, because I feel like I'm dying. And I went to Google, did some research, and at the bottom of the very last article that I looked at, which was 10 reasons why your body may not be accepting insulin as well as it should something like that. Number 10 on the list, 10 out of 10 was you may be struggling with sleep apnea, okay? And I finally realized that this was something that I needed to look into, because my wife kept on waking me up while we were watching, you know, we always watch, like murder mystery shows at night and investigations and stuff like that. She would look over at me like from on the couch where I was, like, asleep, but she would hear me stop breathing, okay, and would have to shake me, like, to wake me up, like, because apparently, you know, I my body just like, wasn't breathing properly, because of, you know, whatever was going on, and I didn't know What was going on. So I reached out to my endocrinologist, and I said, Hey, what do you think about a like, a sleep study? And he said, Oh yeah, that's a great idea. So had that done?

Scott Benner 51:53
I'm sorry, just I'm laughing because I'm like, it's so funny. They never have any advice. But then when you say something like, oh my god, it's a great idea. And then later you'd say, you'd say, I learned this on Google. And they'd go, don't Google stuff. Like, well, you're not having any ideas, but okay. And every time I bring you something from Google, you say, It's okay, as long as I don't say it's from Google. But good.

Derek 52:11
Well, the same guy told me to stay away from Google too, as well. So, but he's a good doctor, but yes, he's actually said those same words, oh, I know it goes good. That's fine, yeah. So he said, Yeah, good idea. Get it done. I did an in home sleep study and found that between 20 and 25

times per hour I was not breathing Jesus and like that scared me half to death. So was your weight higher at that point dark, I was probably around 260 pounds. How tall are you? Nine feet tall, though, so it's okay, right, right. Exactly, yeah. How tall are you? I am 510 Yeah. You were heavy. Like, yeah, right, right. Okay.

To try to explain to a doctor that I really am eating what I should, you know, and have this much of a weight increase. It's like, you know, how can I get these doctors to believe me? But can

Scott Benner 53:20
I ask you a question like, forget the kinds of food calorically, do you think you were eating more calories than you needed in a day? Because this is generally how it happens to people, right? They start using their insulin, they're using enough of it, but they're eating more calories than they should. The insulin, of course, is a storage hormone, and so it is properly packing away calories, as you know, fat and other things, and then they gain weight, and they say, I don't understand, I'm eating well, but they're eating too even if they're eating well, they may be eating too much. Is that? Is that happening to you? Because you earlier said you think you were, like, even the on the we go, or on the ozempic, you were still eating maybe more food than you should have for that scenario? Yeah,

Derek 53:59
yeah, for sure. For sure. I think there's a point that you get to where, no matter what you eat, as far as carbs, if you're eating tons of fat, at least for me, like I can see a huge difference in low carb, low fat versus low carb, high fat, also,

Scott Benner 54:20
low carb is low lower calories too.

Derek 54:23
Yeah, true, true. But you know that all goes back to, like, the quality of food that you eat too, you know, and and being mindful of that, but I don't know, I just, I feel like I was trying to do everything that I should have been doing for the most part. But again, this is one piece of the puzzle that I needed that, you know, I just happened to randomly come across. And it's like, okay, I

Scott Benner 54:51
pulled this information together a couple different ways when you first got on so sleep apnea can significantly impact blood sugar control in people. With type one diabetes, the relationship between sleep apnea and blood sugar management is complex. Here's some of the ways, right? So stress hormone response sleep apnea causes frequent pauses and breathing, which leads to a decrease in oxygen level. The body responds by releasing stress hormones like cortisol and adrenaline to wake the person up, to normalize the breathing. And then, of course, those hormones can trigger, you know, a rise in your blood sugar. There's also impaired insulin sensitivity. The constant release of stress hormones due to sleep apnea can make it harder for the body to use insulin effectively, both in people with and without diabetes. For those with type one, this can lead to unpredictable blood sugar levels and increased insulin requirements. Then there's increased risk of nocturnal hypoglycemia. People with type one diabetes, who have sleep apnea, may experience erratic blood sugar patterns at night, including nighttime lows. The body's response to these lows can be blunted due to poor sleep quality, making nighttime hypoglycemia harder to detect and address. This can lead to daytime fatigue and glucose variability, because we know poor sleep causes, caused by the sleep apnea can also impact your blood sugars. And then the last thing it says is that sleep apnea contributes to systematic inflammation, which exacerbates diabetes related complications such as cardiovascular disease and inflammation can also impair glucose metabolism, worsening glycemic control over time, and, as you know, give your mom an aneurysm on top of everything else. Yeah, so that's what I figured out about that an hour ago. And I've been waiting to, been waiting to read that. I feel like I did a good job. So you figure out about the the the sleep apnea, I'm gonna assume they put you on a CPAP machine, but don't they also want to get your weight down.

Derek 56:39
They do. They do so, you know, I have regular appointments with a sleep doctor. After starting CPAP therapy, I felt so much better. It was like, again, it was almost like being re diagnosed with something again, like that feeling that I had after someone was like, Hey, here's insulin. And then I started using it's like, wow. I just would encourage anyone. You probably have disclosures that you have to read, right? But like, I would encourage anybody, like, if you suddenly see an increase in the amount of insulin or blood pressure medicine that you're using, you might want to take a look at a sleep study to see what's happening. You know, the worst thing that could happen is they tell you, Hey, you're sleeping well at night.

Scott Benner 57:28
So, yeah, right, right. Yeah, that's the worst news you could get, right, or the beer. But listen, when I don't sleep at night, when I stop breathing at night, it's because I think Kelly's holding a pill over my face, but, but every time I wake up, she pretends to be asleep, so I can't really catch her. Yeah, right. Well, I'm glad that that helped you. It really did. So, you know, in the end, your fix was you tried a bunch of different things, right? And what ended up working for you was lower carb intake and the sleep apnea machine to help you with this while you're losing the weight. Is there a feeling that you won't need the CPAP machine at at a certain weight, or what do they think about that? Let

Derek 58:05
me, let me take you, like, a little bit forward. Even though the CPAP thing had increased my quality of sleep and I was on insulin, my a 1c still, like, was not where it needed to be. It was still hanging around in like, the six or sevens. Okay? So I had a conversation with my endocrinologist recently and and I said to him, I said, I've had doctors tell me that I'm a type two and a type one, but they've never gone over the specific tests that tells me, like, what's going on with my body? Can we? Can we please, like, run those tests? And so we ran a battery of tests in June of this year, and it came back that I was re diagnosed as a type two in June of this year. Wait, what? Yeah,

Scott Benner 59:04
they did, what? Like a C peptide, or what did they do? Yep,

Derek 59:07
a C peptide. And a whole bunch of other things that I can't remember, but I am slightly on the type two side of things, apparently, with the the C peptide tests and everything else that they said that they saw. So my doctor put me on at the beginning of June, put me on Manjaro, okay,

Scott Benner 59:35
and dealing with that better than you did with the ozempic.

Derek 59:38
Well, yeah, no side effects whatsoever. Good for you. When I feel full, it doesn't come with like a nauseous feeling. And I had an A 1c go from 8.7 at the beginning of June to five. Point six a couple weeks ago. Hmm.

Scott Benner 1:00:02
So wait. So did you have a C peptide test that showed like high C peptide levels? Yes, due to insulin resistance, is kind of what they think of there. And how about did you do any auto antibody testing? I don't think so. Okay, so are you comfortable that you have type two diabetes?

Derek 1:00:20
I'm good with it.

Scott Benner 1:00:23
That's the funniest thing anyone's gonna say to me this week. You know, it sucks, though, isn't it like that, like you were told type two, then the doctor, I mean, I remember back in the story, the doctor very confidently came in and said, No, no, you have type one, and then here's some insulin. And you think, Oh, that helped. So I probably have type one. Oh, wow, yeah. I hate these stories. They have. Listen. People tell them to me all the time. But, I mean, you could definitely ask for auto antibody testing, right, to see if you have, I mean, I can go over them with you if you want. But, like, it's, you know, there's, like, I think the most common one would be the GAD antibody test an elevated level there would, I think, shows the that there's an auto immune response. But your mom has an auto immune issue, which is, you know, makes it something worth looking into. I would imagine, yeah, there's insulin. Auto antibodies isolate cell. What is that? ICA test, it looks at the insulin producing cells in the pancreas. A couple more I could look them up, and there's a newer one, zinc transporter, something. But, I mean, wait, but are you taking insulin right now?

Derek 1:01:33
At my last appointment, my doctor said to me, let's keep the long acting and get rid of the short acting insulin, because I was having lows all the time about a week before that appointment, and he said, let's just get rid of it and see what happens. And numbers were kind of good for about a week right then about a week and a half after that, I had to start using insulin with meals. So generally, between three and five units total at most is what I use for meals. Now, yeah,

Scott Benner 1:02:14
so I would like, if I was you, I would want the antibody testing. Okay, because I would want to know for certain if I have type one or not. Probably an incredible thing, if you were in a 15 year lot of situation, but at the same time, like if that was your situation, you don't want to wake up one day and just realize that you're not getting insulin that you need, and you know you're in DK or have bigger problems than that, right? So, I mean, I would want to at least know the what I'm on the lookout for. Now, I imagine you're wearing a CGM. I am, yeah. Okay, so you're seeing your blood sugar. So that, that, of course, is, you know, kind of helps head that problem off at the past little bit. But I don't know, man like, I would want somebody to tell me for sure. Yeah, yeah, that's me. I've also had people on here who tell similar stories about Manjaro specifically. I mean, did you hear the one guy, 50 years old, diagnosed type one, six years on insulin. They put him on Manjaro for weight, loses a bunch of weight, completely off insulin. His blood sugar still acts wonky, like he has excursions at meals, but it comes back down on its own. He expects that he's gonna have to get use insulin again at some point, but at the moment, isn't even using any Yeah, I

Derek 1:03:25
heard that episode, and I was like, Wow, that feels like you a little bit, yeah, for sure. I mean, like, I've lost almost 25 pounds since the beginning of June. Oh, good for you. My world is completely different now I look back at like everything that happened, like going from using 40 to 60 units of insulin per meal to now only having to maybe use three to five units is like, wake me up from this dream,

Scott Benner 1:03:57
yeah. But there's going to be more stories like yours, yeah, but this Manjaro, I believe, like, like, moving forward, and I hope that doctors forget, I guess not doctors, but researchers. I hope that researchers dig through it and try to make more sense of it than just leaving a person like you or the guy we were talking about before, just going, like, well, it's working. So, like, you'd all know exactly what's happening, and hopefully that will be what happens in the future. But for now, I'm happy that you're better off. I'll tell you this, I've lost 50 pounds, and I'm five nine. So today I think I'm 185 or something like that. I think that's my weight today. And so I started this whole thing at like, 236 I'm gonna tell you I am not too thin. I am not, like, I haven't gotten lost and, like, losing weight or anything like that. I'm just talking about, like, health wise. And you know what my body looks like? You know meaning, where is it holding fat and stuff like that. At 185 I still have weight to lose. I don't have weight to lose. Like. Like people think anymore, but they're still fat on my body. That just is not healthy for me, yeah. And so I maybe I should say I have fat to lose. I know the 25 pounds is awesome, and it definitely is, but wait till you lose 25 more, and you look back on this day and you think, Oh, God, I was so happy when I just lost the first 25 Yeah, yeah. You

Derek 1:05:21
know, the other thing too, Scott, that is is weird is with CPAP therapy, I got the number of times where I'm trying to think of I'm at a loss for what the the exact term is, but the number of events per hour, basically where you stop breathing with sleep apnea that that went down all the way to five, okay, generally about five with CPAP therapy. But since I've been on Manjaro, on average every night is between one and two times per hour,

Scott Benner 1:05:56
so I feel like you lost weight or since you shot it since Manjaro.

Derek 1:06:04
Hmm, that's crazy. The you know, the other thing that I have in the back of my mind too is like, let's say I have all these tests done that definitively confirm that I'm either a type one or type two. If, if they come back and say, Well, you're a type one. I would hate for my insurance company to say, okay, can't be on Jaro anymore, because my mom actually tried to go on

Scott Benner 1:06:30
Jaro as well, but she's a type one, and they told her no. They told her no, yeah, yep, yeah. I see your fear there. Oh, that makes sense too. Hmm. I'm trying to figure out how GLP could help beyond weight loss with with sleep apnea systematic inflammation. So sleep apnea is associated with systematic inflammation. Maybe that's where it could be, yeah, interesting. I can't wait to find out, uh, even just your neck getting, like, losing weight in your neck would definitely help with sleep apnea as well. Yeah, yep, yep, crazy. You don't realize where fat is until, like, until somebody starts talking to you about, like, oh, that's that fats under your muscle and you're like, what? Yep, getting down by my organs. Yeah, yeah. Oopsie, yeah. Oh, wow, man. Dave, you've had a wild ride. Is this pen passed either you said you had two boys, right? Did your boys have any auto immune issues? No

Derek 1:07:31
other than my my oldest has allergy induced asthma. But like, other than that, they're perfectly healthy,

Scott Benner 1:07:39
so I'm glad, well, this is the part where I ask you if there's anything we haven't spoken about that we should have, because this was great. I appreciate you just kind of unfurling the story for me like this. It was awesome. Thank you. But Did we miss anything? The last

Derek 1:07:53
thing that I think is worthwhile is that I especially for someone who is newly diagnosed. I think one of the things that I did not realize at the beginning of my diabetic journey is that you have to make sure that you're in a right place with how you are emotionally. Because this is a disease that can carry a lot of weight. So make sure that you are well and that you watch you know how you are reacting to certain things, like get around people who will support you and will help you, because it's more than just taking medicine in a lot of cases, like I have a great family, I have a good support system, I have good friends that will ask me how I'm doing and offer help and support. And that's important. I just think that you can't ignore the weight of what type two or type one is, and just say, well, that doesn't really matter. You have to address that, you know, as much as you address, you know, taking medicine as well. Yeah,

Scott Benner 1:09:15
no. I mean, the support piece is huge, and having people around you that can support you is great if you don't have that. Reaching out into community to find people can be very helpful therapy if you can't find that, you know? But I think you're right. There's a, there's a weight that comes with it. You can't ignore it, because one day it'll just, it'll just knock you over. Yep, yeah, no, I appreciate you saying that. Very much. Thank you. Thank you very much. I really, I mean dark. I appreciate you doing this whole thing. We didn't even get to talk about all the some of the cool jobs you've had, but maybe another time. Yep, all right, hold on. One second for me, this was great. Thank you.

Sarah's story so genuinely encapsulates the experiences that. So many caregivers go through on a daily basis. Our Juicebox community knows the importance of caregiver support so intimately, and Sarah's story is just a great example of what caregivers go through on a daily basis. To learn more about the Medtronic champion community and to find helpful resources and tips for caregivers and families, visit Medtronic diabetes.com/parents caregivers. 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 too. So 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, the diabetes variables series from the Juicebox Podcast goes over all the little things that affect your diabetes that you might not think about, travel and exercise to hydration and even trampolines. Juicebox podcast.com, go up in the menu and click on diabetes variables. The Juicebox Podcast is full of so many series that you want and need after dark, ask Scott and Jenny. Algorithm, pumping bold beginnings, defining diabetes, defining thyroid, the diabetes Pro Tip series for type one, the diabetes variable series, mental wellness, type two diabetes pro tip, how we eat? Oh my goodness, there so much at Juicebox podcast.com head up into that menu and pick around. And if you're in the private Facebook group, just go to the feature tab for lists upon lists of all of the series. Always free, always helpful. Subscribing to the Juicebox Podcast newsletter is this easy. You type Juicebox podcast.com into a browser, scroll to the bottom, put in your email address, click sign up. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Hey, what's up, everybody? If you've noticed that the podcast sounds better, and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast. You want somebody to edit

Derek 1:12:17
it. You want rob you.