Scott Benner 12/19/24 Scott Benner 12/19/24

#1387 Type I Don't Know

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

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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.

#1386 From JAX to Indy

Stephanie uses a Mobi pump and has had type 1 for 26 years.

+ Click for EPISODE TRANSCRIPT

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

Stephanie's had type one diabetes for 26 years. She's 46 now, and she advocates for herself along the way. Today, Stephanie uses the mopey pump, and we're going to talk a great deal about it. 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. When you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. AG, one.com/juice, box, don't forget to save 40% off of your entire order at cozy Earth com. All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com don't forget if you're a US resident who has type one, or is the caregiver of someone with type one visit T, 1d exchange.org/juice box right now and complete that survey. It will take you 10 minutes to complete the survey, and that effort alone will help to move type one diabetes research forward. It will cost you nothing to help. Guys, the end of the year is coming close, and I just want to thank you for another record breaking season of the Juicebox Podcast. Thank you so much for listening, for sharing and for supporting the things that I'm doing here with the Juicebox Podcast and on Facebook. I'm having an on body vibe alert. This episode of The Juicebox Podcast is sponsored by ever since 365 the only one year where CGM that's one insertion and one CGM a year. One CGM one year, not every 10 or 14 days ever since cgm.com/juice box. This episode of the juice box podcast is sponsored by us Med, US med.com/juice, box, or call 888-721-1514, us. Med is where my daughter gets her diabetes supplies from, and you could too use the link or number to get your free benefits check and get started today with us. Med, this show is sponsored today by the glucagon that my daughter carries, G VO, hypo pen, find out more at G VO, glucagon, com, forward slash, juice box.

Stephanie Reiner 2:28
I'm Stephanie Reiner, and I was diagnosed with type one diabetes when I was 20 years old, which was July 5, 1998,

Scott Benner 2:37
9002 1008. 18, and then, like, what? Seven? Almost 626. Years? Are you 46

Unknown Speaker 2:45
Yep, I'll be 47 the end of

Scott Benner 2:47
the year. Me. So what happened? Fireworks, scare you gave you diabetes,

Speaker 1 2:53
right? No, I, I went to Wales on spring break in college that year, and everyone on the trip got sick with some sort of respiratory flu type thing, and no one was diagnosed with anything, and it just lingered. I graduated college early at 20 and was excited. I booked a international tour to be a vocal soloist and the dance captain, and then that was for the fall, and then for the next spring, I was supposed to tour the US singing and acting, and so I just needed to fill the summer. So I went to work at a summer camp in a very small town in Indiana, which I'm from Florida. So I knew nothing of Indiana. That week, I started getting sick, but that week, they made us work in the kitchen, and I discovered it was grade D. Government donated meat. So I was like, this might be why I'm and a friend from Florida had also gone, and he was getting sick too. But then by that Friday, I slept for like 20 hours straight, got up, went to dinner with them, went back to bed, and then Fourth of July, went to a party at someone else's house. Then we went to a concert as I was going to the concert, I hit my head getting into the car, so I had a massive headache. I remember being really thirsty, so I got like an icy because none of the drinks sounded good to me, so lots of sugar. And then I slept through the entire outdoor rock concert. So I slept through the Fourth of July, and then when I woke up on the fifth I could barely walk and was sick, and the previous day's dinner came up the same way, smelling the same way. So my digestive system apparently had already shut down. I was driven to an acute care place where they wouldn't give I was just like, can I please have water or ice? And they were like, we don't have ice. And then me, with a swollen tongue, who can barely talk, proceeded to read them the riot act about as an acute care clinic. They're required to have ice because of the nature of the injuries they deal with. Because I had worked at acute care clinic a

Scott Benner 4:52
previous summer, that's where you went,

Speaker 1 4:55
Yeah. And I'm like, Look, if I can't have ice, I can't have ice. But don't tell me you don't have ice. And all of that's where the. Swollen tongue. So I'm sure it was very easily understood, by

Scott Benner 5:04
the way, had we cooked your tongue? It maybe smoked it for a couple of hours at 225 degrees, it would have been better than that meat you were eating in the cafeteria.

Speaker 1 5:11
Yeah, it was bad. That was about it. They were like, you can have something after you see the doctor. So they gave me water, which you should never give to someone who's that dehydrated that their tongue is swollen, so like, what popsicles I had taken down came right back up, and then they had me get on the phone with my parents, who were in Florida, and I'm just so lethargic and my tongue is swollen that I'm like, I don't even want to talk to them, and I'm like, whatever. I just need to sleep. You guys talk to the doctor. So they decide that I should go to the ER, and I'm still like, if you just let me sleep, I'll be fine until we got to the ER, and there's a nurse waiting outside with a wheelchair. They take me back into a room. There's six nurses and a doctor waiting on me, and they immediately start to work, and I'm like, I'm going to die. They don't care if I have insurance or if I can pay because all these people are waiting. And they immediately started working. And that's when I knew it was serious. I had a really bad headache, and it was my heartbeat was elevated all the what I know now is classic DKI symptoms, but as someone who's danced my whole life and I played a couple of RC sports and intramurals in college, they were telling me that I had too good of muscle tone to be a type one diabetic. And, yeah, yeah, exactly, yeah. What? What type of I

Scott Benner 6:33
mean, you've had diabetes for a long time now. Do you see any correlation between that? No, not at all. But listen, I think it's such a you're not going to say a more damning thing in this entire conversation. Maybe, maybe you will then I knew I was sick when they didn't ask me if I could pay for this.

Speaker 1 6:48
Yeah, that's when it got serious. So they did. They did a spinal tap and they did a CAT scan, all because they knew my blood sugar was elevated. But they were looking for other causes, and they couldn't find another cause. So after several hours in the ER, they moved me up to an ICU, and they decided that I'm so dehydrated that they have to do a central line. But they've never done that on anyone who was conscious, so they are a little nervous, and they keep asking me questions like, what's today's date, and who's the president? Why you have a Florida driver's license. Why are you in Indiana? So, like, my medical records have this whole paragraph about how I just graduated from UF with a degree in psychology and blah, blah, blah, blah, and I was supposed to go on tour, and I'm in town working at this camp and all this type of stuff. And then it's like a patient is amazingly co parent, according to body chemistry, she should be unconscious. So they made,

Speaker 2 7:39
hey, who was the president in 98

Unknown Speaker 7:43
I don't remember. I'm

Scott Benner 7:45
testing your recollection of the moment, not of the President. That's all, yeah, I

Speaker 1 7:49
don't Yeah. I haven't read my medical records in decades. But then they want me to sign a release, basically that, you know, if they kill me doing a central line, it's not my fault. But I'm so out of it and exhausted that I'm like, signing instead of using my hand, I'm like, using my shoulder to move my arm, because I'm just I don't have it in my muscles. And then I look at my signature, and it looks nothing like my signature. So I started laughing, and they all get relieved, and they look at me, they're like, what's so funny? And they're like, talking to me like, I'm five years old. And they're waiting for me to be like, there's purple elephants dancing on your head, you know, because it means I'm about to pass out, and instead, I'm like, well, that doesn't look anything like my signature. So if you kill me, I don't know that that would stand up in a court of law.

Scott Benner 8:28
They're just like, if this girl would just pass out, we could give her this line, yeah, not

Speaker 1 8:32
appreciate that. So then they basically, they're like, Okay, you have to take a deep breath and bear down and don't breathe again, because we're going to do a central line where we go through the muscles of your chest straight into your heart, if you move, you can create an air bubble that would go directly into your heart and kill you immediately.

Scott Benner 8:50
Wait, I could? I feel like you could. I don't want to sign that. Give me that back, right, right?

Speaker 1 8:54
So that's what I did. They just numb. They did a topical numbing. And then you feel everything else, and you just take a deep breath and hold they got the central line in, and then this was a teaching hospital, and this poor resident, I don't know what he was, intern, whatever comes up, and the doctor had sent him to get me a popsicle, because that's all I had been asking for the whole time I was there. And he comes back and he's like, we don't, she can't have a sickle. We don't have any sugar free popsicles in the whole hospital. I've been any names all the floors he's been to. And

Scott Benner 9:26
the doctor on the first floor, I've been third floor. I was on the fifth floor, exactly.

Speaker 1 9:30
And the doctor just looked at him and was and read him the riot act, like, up one side and down the other. He's like, I don't care if it has sugar, it doesn't have sugar. Do you see what we just did to her? We're gonna put her on an insulin drip anyway, get her a popsicle. I don't care what type it is like. So then I wound up in ICU, and by this time, the people who worked at the camp and my friends and all the other counselors were all like waiting outside, so they let three of them come in. At that point, it was already after visiting hours. Hours, but they let them come in, and they're all just like, staring at me. And when all this happened, I didn't know at the time, but my friend from Florida got like, had gone to buy me popsicles and took it back to the camp. And as he gets to the camp, the guy who leads the camp was leaving and was like, why are you here? Stephanie's in the hospital. So they turn around and come back to the hospital. He walks in the ER, as the doctor comes out and goes, Look,

Scott Benner 10:24
if you take insulin or so faucinyas, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with G, VO hypo pen. My daughter carries GE, voc hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people with diabetes ages two and above that, I trust low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, jivo hypo pen can be administered in two simple steps, even by yourself in certain situations. Show those around you where you store GEVO kypo pen and how to use it. They need to know how to use GVO kypo pen before an emergency situation happens. Learn more about why GEVO kypo Pen is in ardent diabetes toolkit at G vo glucagon.com/juicebox, gvoke shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma, or if you have a tumor in your pancreas called an insulin OMA, visit gvoke, glucagon, com, slash, risk for safety information. This episode of The Juicebox Podcast is sponsored by the ever since 365 here's what you're getting, long lasting CGM, one year you're wearing this thing. You don't have to change it. There's one warm up and one insertion a year. So there's not going to be any more wasted sensors. This tiny sensor is designed to rest comfortably under your skin for a full year. The app is designed to work with both Android and Apple phones and Apple Watch. I think you really need to see it for yourself. Ever since cgm.com/juicebox, the ever since 365 is so much different, so much more unique than the other CGM that you're accustomed to seeing or wearing. I really think you should take some time to go to the link and see what it's all about. I'm going to tell you one more time ever since cgm.com/juice box, one insertion a year. Remarkable accuracy, no irritation from adhesives, no falling off, no getting knocked off. It's not often in life that you get a pleasant surprise, but I have one for you today. There are links in the show notes and links at Juicebox podcast.com

Speaker 1 12:43
we don't know if she's going to make it. If there's anybody you should call, you should go ahead and call them now.

Scott Benner 12:48
Your friend who's on a popsicle run was told you weren't going to make it. Maybe, yeah, when

Speaker 1 12:51
he walked into the ER, that's what the doctor told them. And there's like, you start, should start calling people. So he's the only one who actually, like, knows me. Stephanie,

Scott Benner 13:00
contextualize this again, you're in what state and where is your family?

Speaker 1 13:04
My family's in Florida, and this has happened. I am Indiana, Indiana, okay, and this guy who he and I sang in a touring ensemble together and stuff like that, he was working, we happened to choose the same summer camp, which literally is what saved my life, that we chose the same summer camp, and so because he's the one who found me that next morning when I couldn't move, he had gone to get popsicles, was sent back to the hospital, he walks in to the ER gathering with the other people from camp. When the doctor comes out and says, we don't know if she's going to make it or not, you should start calling people. So he starts calling all of our friends in Gainesville. He does not have my parents number, so he does not call them. And then one of the girls who was in a touring ensemble with us calls my parents, and she's hysterical, and she's like, I'm so sorry. Is there anything I can do? And my parents are like, they have no idea why she's so upset, because they talked to the doctor at the acute care clinic who made it sound like it wasn't any big deal, and I would be fine. Yeah. Then they get a call a little while later from the ER doc, who says scale of one to 10, Tim being fatal. We don't know if she's a nine or a 10. You need to get here tonight. So they immediately tried to book flights. There was a flight out of Jacksonville through Atlanta, but it wouldn't get to they would miss a connection in Atlanta and they wouldn't make it to Indiana. There was a flight out of Orlando that they could take, but summer of 98 was very dry in Florida, and we had massive wildfires that the smoke had shut down I 95 so they couldn't get to Orlando either. So they drove the like 14 hours across country, not knowing if I was going to be alive or dead. And that was like 98 when people didn't really have cell phones like that, and cars still sucked, right? Yeah, okay, yeah. So they got there the next morning, and I was conscious, and I. Could talk a little bit, but I was just very weak. And so I was in ICU for a couple days, in a regular room for a couple days, and then they dismissed us. The Diabetes training was awful. I had some lady who was much older than my grandmother talking to me about, you know, doing a syringe and an orange because it feels the same. And then she wanted me to poke her and give her a saline shot before I gave myself a saline shot. And I'm like, yeah, no, I'm I, I will give it to myself. They hired some

Scott Benner 15:32
old lady who's a masochist. They're like, she's like, give me a shot, please. Orange,

Speaker 1 15:36
a couple shots, but I'm not going to give you a shot, lady. And and my skin feels very different than your skin, you know, because of collagen, yeah, so it both feel the same. And I definitely don't want to, like, leave a massive bruise on some random lady. So because I've been pushing through an orange then my mom, my dad, and my dad, once he found out I was going to be alive, your

Scott Benner 15:59
dad was like, I wasted this trip. I took a day off from work go back to Florida

Speaker 1 16:03
because my sister is, my sister's three and a half years younger than me, and so she was, like, in high school at the time, and so she was, like, staying with my grandmother. So my dad flew back, and then mom had to drive me back, and so she was begging them to, like, discharge us from the hospital early in the morning because we had a really long drive. And drive. And of course, we were discharged, you know, in the early afternoon instead. And I had to, like, lay down the entire trip home, because my eyes were rehydrating, so everything was going in and out of focus and was blurry, and it just, it was awful. So I couldn't really help, I couldn't help her drive, and she's looking at a 14 hour drive. I had to go back to school for insurance purposes, so that it because this is before insurance reform. So I went back to school. Just went to community college so that the summer was a quote, unquote summer off, and would still be covered by insurance versus diabetes, forever being pre existing never covered. Oh

Scott Benner 16:57
yeah, you had to keep you, had to keep yourself insured consistently so that you didn't have to go look for insurance again as a type one.

Speaker 1 17:04
Yep. So then I had to bail on the international tour that I had booked and the national tour because they would not allow type one diabetics. What kind of tour at the time, music were you singing? It's like a Broadway style for the international tour. I was going to tour US, Canada, Great Britain and Europe as their dance captain and a vocal soloist. They had never had anyone do that. So we're actually rewriting the roles and the entrances and exits to make it work for me. And then I had to call and be like, Thanks for rewriting it. But I have type one diabetes now, and I have to go back to school.

Scott Benner 17:36
Geez. Yeah, any other diabetes in your family or other autoimmune my

Speaker 1 17:41
dad's side has type two, nothing with type one. I had never even met a type one, and actually, I did not meet another type one for a couple years after being diagnosed, I didn't know of any on my mom's side, my mom did have low thyroid whenever she was pregnant with me, and because of my relationship with an endo later, she wound up on thyroid meds. There's not really any auto immune there. What you always ask is bipolar. I do have a relative who has bipolar, but otherwise nothing, no

Scott Benner 18:16
other auto immune stuff. Yeah. Also, we should be clarifying for people who don't, like, listen, like, like, Bipolar is not autoimmune, but it is very, uh, inflammation related, which is why I always ask about stuff. Plus I ask because so many people come on here, anecdotally, yeah, who have a bipolar relative, and I'm just like, at this point now, I'm like, anybody. I'm so stunned every time someone's like, Well, my uncle, I'm like, jeez, yeah. Crazy. Speaking of crazy, Arden has been getting her diabetes supplies from us med for three years. You can as well us med.com/juice, box, or call 888-721-1514, my thanks to us med for sponsoring this episode and for being long time sponsors of the Juicebox Podcast. There are links in the show notes and links at Juicebox podcast.com, to us, med and all the sponsors. WILLIAM JEFFERSON, Clinton was the president 98 actually, this, this happened to you pretty much in the middle of the model. Lewinsky. Lewinsky, yeah, yes, that whole scandal, that's crazy. Kept saying popsicles. And I was like, I don't know, like I want to call your episode popsicles, my gosh, so you've had, well, I do want to go back a little bit. So you had to go back to school, but you went locally. It sounds like I,

Speaker 1 19:33
actually, I went back to school in Gainesville, where UF is, because I had been involved in the community there, and there was a dance studio I was teaching at and stuff like that. So, yep, so I went back to community college there, and I basically just took, like, dance and drawing and psychology classes. Do you still do those things? Yeah, I'm a choreographer, and I dance and sing and act professionally. Occasionally. Uh,

Scott Benner 20:01
professionally, occasionally, well, what

Speaker 1 20:03
that means is, I don't, that's I have professional contracts that I do, and it's just for one show, and then I don't necessarily pick up another contract to perform for a while. It has to be something I really want to do to disrupt my entire life. I see for it, because it's eight shows a week, it's

Scott Benner 20:19
just such a fun statement professionally occasionally, yeah.

Speaker 1 20:23
And then, like I do choreo, I'm paid to be a choreographer, and I, depending on the year, I can choreograph anywhere from two to six productions, okay? And then, since insurance reform happened, I no longer have to, like, work corporate, and then quit and go on COBRA for a year and a half before going back to corporate to be on a group insurance plan since that reform I tutor math and chemistry middle school through college. Oh, awesome. That's excellent, yeah, so it allows me a lot of flexibility. Yeah. Are you married? Do you have kids? I just got engaged a week and a half ago? Oh, congratulations.

Scott Benner 21:01
Yeah, no, kids, yeah. Well, look at you being an adult. Are you still in contact with the kid that found you?

Speaker 1 21:09
Not really. I mean, we are Facebook friends. It's not someone that I talk to regularly. You

Scott Benner 21:15
don't get a message every once a while, like, remember that time I saved your life? Yeah,

Speaker 1 21:19
no. It's more like every time July 5 comes around, someone from that camp will talk about, you know, how their life was forever changed, not knowing if I was going to live or die. Type of post happens, and then we all get tagged in it

Scott Benner 21:35
over the day Stephanie just disappeared. Remember the day that

Speaker 1 21:38
Stephanie went in the hospital, and then she wasn't at camp for the next month, and so we didn't have someone to teach drama or to sing.

Scott Benner 21:45
Oh No, kidding. Everything changed for this so everything, really, I mean, changed for you a lot more. But yes, okay, so throughout this time, it's a long time you've had diabetes, I don't know. I think I want to know about the shift between technology. I'd like to know what you've had to do to keep yourself healthy. You know, what are some of the like, rear view mirror things that you can look back on and say, These are the things I wish people knew about,

Speaker 1 22:13
yeah, when I was diagnosed, then they proceeded to give me, you know, like an exchange diet type of thing, where you I had to get up at eight o'clock and I had to take this mix of regular and NPH insulin, and I had to eat this many grams of carb, this many grams of protein, this much fat, this much fruit and blah, blah, blah, and on and on. And then at a certain time, I had to eat lunch, because that's when the insulin was going to hit, Ready or not, and there were certain things I had to eat. Then I had a choice. Around three o'clock in the afternoon, I could do a snack and eat dinner later, or I could plan to eat dinner earlier, and that would be a shift in my dose according to what I chose. It was not convenient that that shift happened right before, like a jazz class. So I'm like, shoving peanut butter crackers in my mouth to be able to go dance, and then I was required to, you know, eat a yogurt or something like that before I went to sleep. Every night, as a 20 year old, I would have to get up at eight o'clock every day, regardless as to whether it was the weekend or not, because of my insulin. It was difficult dating because it's like, Hey, I we need to go eat at this specific time. And these are the things that I need to eat, which, by the way, doesn't line up with any single menu item. So it's like, I'll take this entree and then I also need this side with this and this. And so I tried to follow it pretty exacting, but it was the most frustrating thing. And I had no hunger signals anymore, unless I was going low really fast and would shake.

Scott Benner 23:54
Is that because you were eating so frequently, you think,

Speaker 1 23:58
or like, hunger signals? Yeah, yeah. I have no idea, like, it got to where they'd be like, well, what are you hungry for? And I'm like, that. She said, I'm not hungry. I'm eating because I'm required to eat. I no longer, like, craved a pizza or a burger or something like that. From time to time. Has that

Scott Benner 24:12
gone away or changed? No, no. Arden talks about that, yeah,

Speaker 1 24:16
no, not at all. So it's the type of thing where it might be once every three or four months, and I'm like, Oh, I just really want a burger. And if I'm I've already planned to go out with friends and they're getting something else that's great. You can get whatever you want, but I'm gonna go to this place and I'm gonna get a burger and then I'll meet you, because I try to, like, reinforce the hunger signals that I have, yeah?

Scott Benner 24:35
But you try to, you try to pay your body back for telling you

Speaker 1 24:38
something like, yeah, thank you for actually communicating. Let's continue this. Here's the cheeseburger

Scott Benner 24:42
us for great a, exactly great a, by the way,

Speaker 1 24:46
that's right, no more government. Government donated junk. I, by the way,

Scott Benner 24:50
I have to tell you, I looked into it. The the D rating is not how they grade beef. But still, I like, I like the visual. Wait a minute. Hold on, I have a question. So you were like, as a young person, following this super strict schedule, and you were actually following it, right? So to the detriment of what it sounds like is your personal life and perhaps some of your happiness, but you followed it. Did it pay you back? Were you getting the health results that that you wanted?

Speaker 1 25:18
I didn't even know. Like what the health results goals were like when I came back to Indy, to Jax from Indy, I met with an indo and it was not good. Like, the first thing she said is, like she ranted to me about how I could never get pregnant until I had had a normal a 1c for at least nine months. And she literally meant a normal, as in, not diabetic, a 1c which, like in the fours, yeah, like in the Force to blow five, which I'll let you know when I had that. And she just went off about it, and then she turned around. She's like, look, we want diabetes to exercise, but dance is a very unpredictable exercise, so we're going to need to figure out something else for you. And I just stopped her there, and I go, Okay, let's just start again. I said, I'm Stephanie. I have diabetes. Diabetes does not have me. I dance. So you're going to have to find a way to make it work. And because I bucked up and kind of talked back basically, and was like, No, this is what I need. That's why I got the approval to go to school in Gainesville, because I had to have an endo sign off for me to be that far away. It's only an hour and a half away. She was like, as long as you come back every month and a half, I'm every three months, then I'm fine with you going to Gainesville. Wait, diabetes

Scott Benner 26:34
was changed. Was impacting your ability to move around the country if you

Speaker 1 26:38
wanted to. Yeah, within some of the insurance stuff, yes, oh, my God,

Scott Benner 26:43
that's, that's all crazy. You're old. No, I'm just kidding. I know

Speaker 1 26:50
I'm still here, yeah, so, but then I didn't get really education about, like, what insulin does and that type of I just knew you take this and that. So it was the type of thing where, if I went to a party and I wanted ice cream, I didn't have an intelligent way to dose for that, and so I would just randomly dose, and all I had was regular and NPH, and I would just dose for ice cream and not know if it was going to work or not work. And really had no idea that I could kill myself with insulin.

Scott Benner 27:20
I'm so stunned by that idea of that you didn't even know what your goals were. No, did you ever watch that TV show? Lost? You're old. You probably saw it. Yes, you remember they had to push the button. Yeah, totally. It feels like that. Yes, yeah. It just like, do this thing, and you're like, Okay, I'll, you know, I'm 20, but I'll go to, I'll go to the early bird special at 4pm and have dinner then, and, like, not eat anything and only eat this and blah, blah, blah. Why am I? But you didn't know. So you're doing this thing over and over and over again, but you don't know why. That seems very frustrating to me. It was

Speaker 1 27:57
incredibly frustrating. Like, all I and all I knew was about type two diabetes, and like all the complications that can happen because of type two and that's all that I knew. I mean, JDRF existed, but they did not do anything. There was no first diagnosis support or anything like that, where you were no and I think part of it also is because I was diagnosed in Indiana, and then I moved back to Florida. She

Scott Benner 28:21
weren't grounded anywhere, really, either, right? Yeah, I just talked to a guy in his 70, like, a 76 year old guy, and he credits JDRF for really helping him, because when they first started, it was the first time that you could get information that wasn't like at the library, right? And he was like, he's like, that really changed my life. So it would have been nice to have some information as well for you, but I just think I'm gonna go back to this for half a second, then I'm gonna let it go. But I want everyone listening. I don't want to break the fourth wall in our conversation. But wonder about how many things diabetes or not, you're doing every day, and you have no idea why you're doing them. I just think it's a deep question to look at yourself and say, How many things am I just automatically doing that I maybe don't even need to be doing, or could be doing differently or better, or maybe don't even know at all why it's happening. I just, I think it's an, it's an important thing to examine once in a while. But yeah, yeah, for sure. Okay, so you're out there with your ice cream, just winging it. Does this go well, mostly? Or Yeah, it did,

Speaker 1 29:25
yeah, it went pretty well. Yeah. It was a frustration. And you know, I would get gigantic black bruises where I had nicked a vein or artery or whatever. You

Scott Benner 29:36
should have stuck the lady in the hospital. You would have learned,

Speaker 1 29:38
well, can't help it when you hit a blood vessel, which you know is more noticeable when you live in Florida and you go to the beach all the time and that type of a thing. But you were rejecting a lot. You're saying, Yeah, well, I only, and there was no pump option for me at that time. And then so that was like a year, and I taught dance, and I and I. Went to community college, and then I got a job back in Jacksonville, where I was a part time administrator for an arts institution, and then I taught drama and dance there so that it wound up being full time between all the hours, so that I qualified for their insurance. And that made me switch to Mayo in Jacksonville, and that endo told me, because I was asking about a pump, he told me not to even consider it that the pumps were not good enough and diabetes would be cured in five years. That was back when you were 20 that was when I was 21 Yeah, that was a 99 Okay, yeah, you know, and so I'm, I'm testing my blood sugar tons. And you know, anytime that I'm dancing, I'm testing before I'm dancing, and then if I feel shaky during dancing, you know, I would check it. But really, for the most part, like I was probably coasting a little high and didn't know any better, didn't know kind of what goals I should have pre and post exercise and that type of thing. Because basically they just looked at my numbers, like, yeah, you're doing fine. And by doing fine probably meant that I was like, 6.8 to 7.2 on a 1c Yeah, with no CGM and no

Scott Benner 31:13
pump and back then, no idea if you're like, bouncing up and down or anything like that. Right?

Speaker 1 31:17
Standard Deviation doesn't exist into that. And then I moved to Dallas Fort Worth. I dance part time with a professional dance company, and then I was also working corporate, and my indo in Dallas was phenomenal, and they were involved in a ton of research. And so literally, the day or day after that, the 24 hour insulin and short acting insulin became approved in the US I had it. When was that? That was like, in 2001

Scott Benner 31:50
ish, only three years until the the cure. So you were probably right. Did you actually live thinking that that, oh, this will be over in five years? No, okay, because,

Speaker 1 32:00
and that's more of a personality thing, it's like, I can't, like, I'm not banking on anything right out there, as you know, a constantly moving target, like I'm doing the best that I can with what I have right now to set myself up for what I want to do. And so a lot of it was fighting against the current of, no, I still want to perform, I still want to dance. I still want to have that option. Because everything that they wanted me to do, from from an endocrinologist appointment was, please, just have lived the same life every day and like it was a Groundhog Day is was the solution, so that your life is completely predictable. And I'm like, That's great. That does not work for me. Personality wise. I like things that are spontaneous and changing and shifting, and I like that energy and interaction, and so I want to have that flexibility, besides the fact that, yes, I dance and do choreography, and sometimes, if I'm teaching a class, I'm dancing the whole time, and sometimes I'm teaching a class, I'm dancing very little, and I'm just doing small corrections. And yes, that is more difficult to manage, but it's what it's worth it for me, and I want to do it. And so that has been a big part of the fight throughout, is to to have flexibility built in to my diabetes management. And so I had to, you know, push against endos. That endo was great. Unfortunately, a year later, well, so I guess that was around 2000 because then 911 happened, and the company I was with went through layoffs, and I went in the third wave of layoffs. So it's like it was on my one year anniversary with the company I had uprooted my whole life and moved to Dallas Fort Worth, and I was there. And so I went on COBRA, which is very expensive, and I continued to do choreography and that type of thing and look for work. And I, in the meantime, I made a dance company, and we danced in Dallas Fort Worth for a while. We toured that next summer. We toured Florida for six weeks, and we went and danced in Norway for 10 days. And then I went back and got a corporate job because Cobra was ending, and I did recruiting. And then I went into purchasing management. And with that insurance, it required a different endo who I had a string of some bad endos in Dallas, Fort Worth. One messed up some medication so bad that they, like, took it out of my record, because it could have killed me, and I don't even remember what it was anymore. Sorry for that little tidbit, just to tease you with and then be like, I don't even know what it was. Um, so I changed doctors. I had found this great one, and he was phenomenal. And then he got stomach cancer, and he had to quit his pack practice. The lady who took over, like proceeded to berate me every time I went in and tell me how, you know I was killing myself, and I was doing this, and I was doing but there was no education that went with it. Trust me, I met with diabetes educators, and they're like, you know how? You know what to eat, and you know what this is, so you're doing fine. The lady her her way. Was to scare and intimidate people, and it was so bad that they, like, they had me go out the back door so that no one in the lobby would see my face, because I had been so angry, like, I cry when I'm angry, and my whole face was red. So they didn't charge me for that. They didn't want record of it. But they pushed out the valley, yeah, pushed me out the back door. They're like, dance away. Stephanie, yep, so and then around, I don't know it's like, 2003 2004 I wound up in the hospital with DKA. I didn't know that insulin that like, I should look at my insulin closely and know that it's not cloudy like, and that type of like, it had been kept it wasn't, it was a new vial, but the vial I got was cloudy, and I didn't know any different, like, I took it into the hospital. So, like I was I went into DKA, but I was treating myself repeatedly, and it wasn't coming down. So when I went in, unfortunately, this hospital typically deals with type twos, and I'm in the ICU, and then internist comes in. He's, you know, treating him, whatever. And then they go to give me a meal, but they're only they give me insulin, and then I eat, and I go to bed, whatever. And then they they check my insulin, my levels, before I go to bed for the night. The next morning, they're checking it, and I realized that, because my blood sugar is okay, they're not going to give me insulin for my meal, but they want me to eat breakfast. And I'm like, No, I can't eat breakfast without insulin. Like, I knew that much. And they're like, No, you have to. And I'm like, No, you don't understand. I can't. And so they're like, it's doctor's orders. Blah, blah is like, Well, I'm not going to eat. And I just, I was like, I'm not going to eat if you won't give me insulin. So then the doctor comes in. He's mad because I have threatened his authority. I don't know. I'm non compliant, clearly, so I literally drew a picture for him. I'm like, okay, so I eat. I eat. Here's the simple carbs, are in and out in an hour. Here's the complex carbs, they're in and out in two hours. Here's your fat and protein. They're hitting about four hours. They stay till about six and then they're tapering off. This is why you want to balance meals, so that you have balanced blood sugar. I was like, however, was like, however, I don't release any insulin to combat this. This is why I need insulin. And he went off, and he was angry, and he's telling and so mind you, at the time, I was primarily dancing, and so he goes off and tells me that the reason I'm in there is because I'm out partying and drinking every night. And he just went on this tirade about, clearly, you know, a a young to mid, 20 something year old woman, that's all she does, you know, and she's not taking care of her body, which, as a dancer, that doesn't quite work. I just looked at him and I said, you're fired. I said, I'll take another doctor

Scott Benner 37:39
so, but yeah, I have to tell you. Like, it's incredibly common to hear from younger people that someone just takes the leap and goes, oh, you know you're struggling or whatever, because you're out partying all the time. Like, were you out partying

Speaker 1 37:52
all the time? No, no, I wasn't. I didn't even drink it's so funny.

Scott Benner 37:57
It happens constantly. Like, you know what it almost is like, like, you know how you kids are like, Oh, great. Just lump me in with everybody. That's fantastic. I

Speaker 1 38:03
told him, it's like, no, I'm I'm a dancer, like, I cannot do that like and and perform well. And he just continued. So I said, Okay, you're fired. So then a little while later, another internist came in, rather hesitantly, like I was going to throw something at him, and clearly had been told I was non compliant. He's like, Well, why don't you tell me what the problem is? And so I showed him. I'm like, here's the graph I just showed this guy, and this is why I won't eat breakfast if you won't give me insulin, because the only normal blood sugar I will have during my hospital stay is in the morning you're going to keep feeding

Scott Benner 38:36
me. Did that help? Did the second person go, oh, okay, hold on, let's get you some insulin.

Speaker 1 38:40
No, you know what he said? He's like, wow. You know this better than we do. We pre we primarily teach type twos. He goes, so why don't we do this? I'll get your body chemistry in order, and you manage your blood sugar. I'll give you, I'll let you dose your own insulin. And then that's when we saw that. It was cloudy. And he's like, we need to get you new insulin. I didn't know because I was like, it was a new vial that came from the pharmacy, but at least you found a reasonable person. Found a reasonable absolutely and so then he's like, Okay, once we get, once I get your potassium leveled out, he's like, I'll write you a note for work that says that you need to be on bed rest for a week, and then that you do half days for the week after that. But he pretty much, he's like, we don't we don't know how to treat type ones. We treat Type twos primarily.

Scott Benner 39:20
I'd like to get a script for bed rest for a week. You think the guy that makes this podcast would let me go? I want to, I'd like a week off. That sounds awesome. So okay, so you found a reasonable person you get your cloudy insulin fixed, etc. That good. That's awesome. These kind of things continue to happen through life with diabetes. Or does it change as you like. Do you find yourself in the hospital over and over again as the years go by? No.

Speaker 1 39:45
The only other time I was in the hospital was a was shortly after I went on the pump with a bent cannula, okay? And that was the only time, and that was an easy fix.

Scott Benner 39:53
Listen, it's an interesting look at what it was like back then. And, yeah, I think because you fought back. And had a tiny bit of understanding. It's, you know, understanding that it seems like you build on your own. It's not like anybody came along and gave it to you. So I think it saves you, because you weren't even in the like the late 80s, you were like the late 90s, and still everything was janky as could be. I don't know that. It's, I don't know. I mean, the technology is better, the medications are better. I don't know if the on the ground understandings any better, but Right, yeah, you saved yourself. You really did. Because if you would have just listened to them, you'd be in a completely different health situation today. Absolutely. Yeah, yeah. If I, if I wasn't the personality that that advocates for myself, I would have been totally in a different place. Yeah, you have no idea. And do you have any complications today? No, well, good. I'm glad for you. But I mean, it's, it's literally, I know too many people were like, Hey, I did what they told me. And, yeah, absolutely, yeah, yeah. Now let me tell you about what it feels like to get a needle in your eye 1000 times, right, right.

Speaker 1 40:59
So then I moved to Indiana, yeah, and that's where Eli Lilly is, and I had a phenomenal indo there. He asked me if I wanted to be on a pump, and I told him what the mayo doctor had said, like, 10 years earlier. And he's like, no. He's like, we need to get you on a pump. And so he's the first and only indo who advocated strongly for me, and he fought with me against Blue Cross, Blue Shield of Tennessee, and I was the first person that got approved for an insulin pump and CGM. You

Scott Benner 41:27
didn't tell them, I don't need a pump. They died. They cured diabetes five years ago, right? Yeah, I'm all good. Like, did you not hear by the way, I don't know that we've ever truly cured anything, anything. Yeah, we eradicate things, usually through vaccines. When you think about what it means to be cured, like, right? Like, you're talking about, like, there's something wrong with me, and then something else is introduced, and now that thing is not wrong anymore and doesn't come back, right? I mean, I think there's, like, certain kinds of cancers that they can they can completely, like, get out of you, like, but I don't know what people think when they think cure. You know what I mean? Let me ask you a question. If they could stick a packet of cells in you that your immune system couldn't get to, and therefore you didn't need, uh, anti rejection meds, and your body just was like, boom, I don't know. They put in some new beta cells. You're making insulin. You're all good. Are you cured? Or do you just not need man made insulin anymore, because there's a device in you, right?

Speaker 1 42:29
Yeah. You know what I mean, absolutely. Yeah. If you're defining cured as the body being restored to how it originally functioned, that's not happening. If you're talking cured in that I'm not needing a synthetic insulin anymore, that's a different story, right?

Scott Benner 42:46
Yeah, and I'm probably like, I wouldn't, no one would turn their nose up at that. I don't think Correct, yeah, it's just the word is, I don't know. I think it's misunderstood, perhaps, you know, to some degree, commingled with other ideas. You know, if you could eradicate my daughter's type one diabetes, but, you know, she still had the autoimmune issue that, like, put her there. I mean, I think I'd take that as a pretty big win, you know, but it's just, it's funny that, like a doctor said to you, don't worry, this will all just be gone soon,

Speaker 1 43:14
right? Yeah, it's like a magic eraser. Don't worry, everything's fine, yeah, oh my gosh. So he just, he fought with me with insurance, and I got Blue Cross, Blue Shield to give me an insulin pump and a CGM. Before that, I was doing a minimum of eight shots a day to give myself flexibility, to be able to dance and rehearse as well as work corporate and eat when I was hungry or not really hungry. But, you know, close to it, versus just eat on a schedule, so to give myself the most flexibility. And that's why he wanted that's why he helped me get a pump. But the problem is I wound up being allergic to the CGM. It was Medtronic. I was allergic to their original CGM, the one that looks like sliced mushrooms. And they couldn't figure out why, and so I just basically dropped, you know, three to 5000 on a useless something, and then I had the pump. It was great. Unfortunately, once it got approved, he died, but endo and I wound up with his partner who had no bedside manner. He's the one who told me that I would be in this horrible position until I learned to say no to people. And I'm like, I don't think you understand. I'm a purchasing manager. I negotiate multi million dollars deals with Exxon and Dao, and I have no issue speaking my mind and telling people, no, wait, what did he think? You weren't sticking up for? He said that I wasn't prioritizing my health, but he didn't ask me what I did or what I didn't he just it was his typical speech that he gives every single patient I found out, oh, he primarily worked with gestational diabetes, and then he had to take over his partner's patients until they could get somebody else in there. And I told him, I said, well, until you see the patient in front of you, and so the one in your head, I'm not getting anywhere. You're telling me

Scott Benner 44:55
that. Basically, he looks up and goes, diabetes, I'll get. Give them this old chestnut and then tells the story,

Speaker 1 45:02
yes. Ah, there you go. Yeah, yeah. So that was that guy. And then I moved back the Northeast Florida area, which is where I'm from, and have been with the same endo pretty much for the last 1011, years. And really, a lot of it at the beginning was just like, I needed someone who would listen and who would validate and would dialog with me and kind of get over the different trauma of the different people who would yell at me as endos. And I'm like, I don't, but you don't understand that's not what this is. And that was great. Now, since insurance has been pushing back on different scripts and stuff, he would do things off label, but the last three to four years, not so much. And so I don't know how much I will stay with that Endo, because you're doing better than 99% of patients anywhere. You know, my A once I have switched over, once my Medtronic was up for warranty, I switched over to tandem. I was on the freestyle for a while because my Medtronic, you know, wouldn't cooperate with anything. So I just did a FreeStyle Libre. And then just by adding the FreeStyle Libre with the Medtronic pump, I was able to take my ANC from a 6.8 to 7.2 and then it dropped down to more the mid six range, 6.4 to 6.8 and then we went to once that was up, I went to tandems pump, and then with the Dexcom and the basal IQ, and then to control IQ. And with that, then I was pretty much maintaining about a 6.2 without a lot of work, awesome, but a lot of it is, you know, I'm tweaking my settings. He's not. He confirms it. And like every, you know, I he only wants to see me, like, every four to six months, because I'm doing it all. But I'm like, Yeah, but I'm still patient. I would like to have someone to dialog this through with and to look at which ways can we tweak it better. I may be doing better than 99% of the people, but that doesn't mean that I'm doing the best that I can do, because I would love to have as close to normal a 1c levels, provided that I'm not, you know, doing the standard deviation game of dropping down into nothingness. That one fascinates

Scott Benner 47:06
me too. Like, you're like, hey, I have a six, eight. I'd like to do better. And they go. A lot of people in this office have a 10. What does that have to do with me?

Speaker 1 47:14
Exactly. That's what I told him. I was like, I said, I'm still paying you for a session to be my doctor, and that means that you have to You're treating me where I am and taking me to the next place. You

Scott Benner 47:25
got to realize he feels like you're a win. Yeah, exactly. You're checked off the list. You're like, Stephanie done. Don't need to do anything very here's your scripts, honey. Get out of here. Yeah. No, no, that's awesome. What pump do you use? Modern day today? Now

Speaker 1 47:38
I'm on the Moby. I went on that at the beginning of March, my tandem pump went out of warranty in August of 2023 and I really adamantly wanted the Moby. I knew it was going to be coming out, so I refused to sign up for a new one. And they're like, No, you can change over for 1000 bucks. I said, or I can stay with this, and my insurance pays for it, so I'm going to wait you out. And they're like, Well, what if your pump malfunctions? You won't get a warranty. I was like, then I'll switch over to prescription benefits and do Omnipod for a while, and maybe I'll come back to tandem. Maybe I won't

Scott Benner 48:11
just, is that just a sales person or a doctor trying to shake you out of that 1000?

Speaker 1 48:15
Doctor, oh, no, not. Doctor, just tandem is tandem constantly calling me every month about my out of out of war, and I just was honest. I was like, Look, I'm going to continue with my out of warranty pump. I'm not going to have my insurance lock me in to this brick. It's not a brick, but what felt like a brick, because when I'm going to perform on stage, where do I put that that doesn't show in a costume, if I'm dancing or other times with you know, if I'm doing more of a stage play, then where does it go in that so that it's not showing and everything? And so I was like, I don't want it. I want the Moby. Can

Scott Benner 48:48
I ask you? So you wanted a small footprint and but you did, but you wanted to stick with their algorithm, because you could have gone to Omnipod. So you but you will like the tandem algorithm.

Speaker 1 48:59
I like the tandem algorithm. It's also with Omnipod. It is prescription benefit, which is a lot more money for me. Oh, your insurance doesn't cover it as well. Yes, because my insurance, my durable medical, is paid at 100% I

Scott Benner 49:12
see, yeah, so Okay, well, that even makes more sense. So it wasn't as much about like the algorithm, as it was about the cost.

Speaker 1 49:19
I knew the algorithm worked for me. So I was planning. And so I'm good with staying with I would have been fine with trying the Omnipod algorithm had it not been cost prohibitive, comparatively, I understand.

Scott Benner 49:29
Okay, so how long you've been wearing it, since March? Can you tell me a little bit about it? I don't know. You might be the first person I've spoken to who's wearing it. What

Speaker 1 49:36
do you think I love it? I mean, it's the same algorithm is the reality. So there's not a big switch for me in that way. The new option is, obviously, it's literally half the size. It's slightly smaller than an air pod case, carrying case. I personally like the clip that comes with it. Some people have trouble getting it in and out. I don't have that issue. I like that. I. Can put it in a coin pocket of my jeans. I can hook it on my jeans. I can hook it at the center of my bra, and it stays, and it's out of the way and it's not visible, because I don't have to ever touch the pump, because everything is run on my phone. I can tell you that, like, the first month and a half that I had it, I felt like I had this irrational anxiety of I had to have my phone up under me and on and fully charged at all times. I had that little freak out type of a thing, but it's not there anymore. I did have some issues with with bent cannulas, or just poor absorption with the with the five inch tubing, because when you go to insert the five inch tutor tubing, when you pull it back, it's much more stiff than any of the 23 inch tubing, so it's easier to dislodge it, or have it slightly crooked, so that when you go to apply it, it doesn't go in straight, and you wind up with a bent cannula. So on my arm, I like I tried wearing it on my arm with the sleeve, because great. I don't have to worry about where I put it in my clothes, inserting it on your arm by yourself with a five inch that was really tight, pulling back, I had a lot of Ben keynotes. There's a massive learning curve for that. As someone who been using the 23 inch for five years, okay, there was a massive learning because

Scott Benner 51:15
so with the Mobi, for people who maybe don't understand, like, you can do it like on body, right? Like, there's like an adhesive sleeve you could put on and then slide it in, and then just use that short five inch cannula, and then kind of keep everything, the infusion set and the pump right in the kind of the same spot on you, stuck to you, not having to clip it to your clothes. But that shortness of that

Speaker 1 51:37
tubing, is tubing, yeah, not cannula, five inch tubing. Yeah,

Scott Benner 51:41
sorry, sorry. So the shortness of the of the tubing is, like, kind of creating, sometimes, like creating a learning curve where you had to, like, really figure out how to put that in straight without bending the cannula. Yeah? Well, and

Speaker 1 51:52
you're balancing, because you have to balance the Mobi on your arm while you're trying to insert it on your arm, all one handed, because clearly, my elbow doesn't go that way up to hold it. Yeah.

Scott Benner 52:03
So are you wearing it with the adhesive sleeve, or do you prefer the longer tubing and just clip it to your clothing?

Speaker 1 52:10
I use the 23 inch most of the time because it allows me to move the pump to wherever I want for whatever I wear that day. So like, if I'm wearing a dress, then I can just pump it. I can cook it into my bra, in the center on the back, wherever I want, and it stays. And I don't have to worry about it. If I'm wearing shorts or, you know, jeans or whatever, I can hook it on the the waistband of that, or to the pocket of that, and it lets me change it around to I want to put it in the back because, you know, I'm wearing something that's more fitted, and so I'm going to hook it to the back of something that allows me to have the option of whether it's seen or not seen, and how accessible it is by doing the 23 inch. When it's summertime in Florida and I am, there's a water park here in my neighborhood. I'm going to go to the water park, especially when I go with like, my niece and nephew, who are like, five and two and a half. I'm going to be going down the water slides. I wear the sleeve and put the Moby in that, because it is water resistant up to eight feet for up to two hours, which is the same water resistance as Omnipod. There's a lot of people in Moby land who are like, you know, it's not waterproof, so you shouldn't do it, and this that the other it's water resistant. I'm not swimming lap, so I'm not as worried about that. But I have also, in this process of being one of the first 5000 in the US to get it. Have talked with their tech support, and I have answered, I have done some troubleshooting questions with them on their training modules and other things like that. And so as a part of that, in talking with their tech people, the tech people are shocked that people are not just wearing it 24/7 in the shower, in the, you know, in the pool and that type of thing that some people are still hesitant about that water resistance rating. And I just think that's the difference is if, if an Omnipod messes up, you just put on a new pod. If your Moby water resistance messes up, you don't know, waiting for a replacement, yeah, and that's the difference, right? Yeah, then

Scott Benner 54:10
that could scare people away. You said a couple moments ago about like you had a feeling that you needed to keep the phone, like, very close. But does the phone? Is the algorithm not on the phone the

Speaker 1 54:21
pump and my CGM talk to each other, and they work regardless. The app on my phone is my visibility into what the pump is doing, and then it's also my place to go in and enter in carbs, you know, shift into exercise mode and other things like that. Which exercise mode. I have a whole different profile for because just shifting into exercise modes with the same insulin correction factor does nothing, because it'll give you corrections and then you wind up plummeting. I also have a tendency to I like the sleep mode for their algorithm, and pretty much run sleep mode 24/7, so. Because I've dialed in my basal and I've dialed in my carb ratios. So that way, if I if I know if I go shopping, it doesn't matter if it's clothes or groceries or whatever, I drop like a rock. Okay, there is no adrenaline, there's no enjoyment for me, and I drop like a rock with that. So I know that, and so I make sure that I don't get a Bolus, and I want to make sure that I run a little bit higher before heading into that. And if I was running the normal control, IQ versus the sleep mode, it does auto Bolus is when it predicts you're going to go over, like 170 so I tend to go for sleep mode. But just because I don't want to have to pay attention to the auto Bolus is before I say doing life.

Scott Benner 55:45
So if I took your phone and threw it out the window, you couldn't Bolus, right? You couldn't see what was going on.

Speaker 1 55:53
I cannot see I did go ahead. There's a one button on the Moby, and you can use it to snooze alarms, which is really annoying that you can't actually clear alarms on it. Just snooze it. You have to clear it from the app, and that's one of the things I talked to them about their training module. Because for the first 24 hours, I thought I was going to throw the Moby off a bridge because it kept buzzing and I kept clearing it on the pump. But you actually have to, you have to swipe left on the app to clear it, so that it won't snooze and go off again another two minutes. But I can, I programmed it so that if I hold it down, I can micro dose. And basically you can decide, like every time I hold it down, that is equivalent to point one units, or point oh, five units, or point two, five units, whatever you want it to be. And you hold it down, and you do that multiple times, and then it mimics it back to you to confirm what the dosage is, and then it'll give it to you, but that's you just giving the insulin, versus actually entering in like, Hey, this is how many carbs I'm eating and and now I can see what my blood sugar is, and this is what the algorithm is predicting. So you're missing that point without the app, right?

Scott Benner 57:01
But the algorithm is still running, yes, but it can't, but it doesn't know that you had carbs if you had carbs, right? So you can, like, test with a meter, like, so if you left your house forgot your phone, you could test with a meter if you had one, and then Bolus for food based on the if you had the button, program to do something, right?

Speaker 1 57:18
Some people choose not to program that button. I don't know why you wouldn't, but I did that as a part of the setup. Okay, it's a it's an option in your setup.

Scott Benner 57:27
Well, maybe for kids, maybe people don't want to, yeah, have them like being able to just be like, hey, insulin. Insulin,

Speaker 1 57:31
exactly. Yeah, interesting. So you like it? Yes, I do like the size makes the biggest difference in the world. And I know that sound it, it sounds minimal to a lot of people, but when it's literally half the size, and I go from everyone seeing it and crazy people asking me if I have a pager still, that type of thing, to where people don't even notice it, it's a big difference. And for me to be able to perform on stage without necessarily like I don't have any issue with my CGM being seen. I don't have any issue with my pump being seen. I talk to people about it all the time. When you're on stage and it's, you know, something said in the 1800s it might pull them out a bit.

Scott Benner 58:13
Yeah, yeah. So it's nice to be able to hide it if you can. Yeah, yeah. I listen, Arden's been wearing an omnipot since she was four, and I still, like, get stuck on the idea of, like, how do you sleep with the tubing? Like, and I'm sure, obviously, it's very doable, because people do it constantly. It's interesting how, like, whatever you're accustomed to the other normal, yeah, and the other stuff seems like crazy, you know, right?

Speaker 1 58:37
Well, with the five inch tubing, I do generally wear it in a sleeve. I did play around with the five inch tubing on my stomach some and, like, if I was going to go to the bathroom, I would just clip it to the bottom of my T shirt, and then it would stay in place. You can also the Moby is so much lighter that if it dangles from it, it does not pull. Oh, okay, and it's not not a deal. It's not heavy, like the previous like the tandem x2 if, if that came unhooked and dropped, sometimes it could pull my sight off because the weight of it pulling and falling. But with the Moby, that does not, that's never right. Problem.

Scott Benner 59:13
Awesome. It holds 200 units. Is that in a cartridge? Or do you have to fill something?

Speaker 1 59:17
You feel it, you can actually see it on the side. This is better than the x2 and that is kind of an all in one thing, the way that they have you filling it. The downside is that it's very visible. So a lot of people are seeing all the bubbles that happen in every pump when the insulin warms up, and then they are they're worried about clearing bubbles, which is totally valid, but you had that same concern with the other pumps, and you just didn't have the visibility into it, yeah. So I make sure that when I wear it, I wear it where the tubing points down, so that the air bubbles are at the top of the cartridge, so that the air bubbles are not getting pushed through my tubing. Does that happen though the air bubbles come through they can, if you wear it the other direction, because the air bubbles float to the top, and so then they can come up. But that's what happens. Than any other pump that they just don't see the pump. Yeah?

Scott Benner 1:00:02
I mean, that's not an omnipot thing. So that again, like, that's the thing I've never had to deal with, yeah, like, priming, tubing and stuff like that. Like, I don't know about that. Okay, awesome. Well, I appreciate you sharing that with me. Thank you. Absolutely. What have we not talked about that you wanted to? I think that's

Speaker 1 1:00:18
pretty much it. I mean, a lot of it, my journey has been insisting that the doctors would have to find a way to make it work, and then me doing the research to say, No, this is possible. Or me choosing like, instead of just doing the four shots a day, I'm going to go to eight shots a day, so that I have that flexibility. And me choosing flexibility over what they felt was safe predictability. But for me, that safe, predictable, every day is the same, felt like a slow death, like I I like to have my days be different, and I like to be able to decide to to go dance or go Kayak or, you know, whatever, do what I want when I want, as opposed to being locked in. And there are doctors who get that, and there are doctors who, when you push back, think you're being non compliant. Well,

Scott Benner 1:01:10
it's a it's a space on their form. They know how to and how to fill that out. She's not listening to me, right? I told her that story that I tell everybody, and she didn't like it. Yeah, have you experimented with different eating styles throughout the years?

Speaker 1 1:01:26
Not really, to be honest, I am, like, ever since I was a child. I am meat driven. Like, what do you want to eat for dinner? If we go out, it's always, what meat do I want? And then the sides I don't really care about that didn't really drive my choice ever so that is what it is. That's the way I've always eaten. Since dosing insulin and all of that, I have tended to eat my vegetables first, and then my meats and then my carbs come at the end. I just stumbled upon that. I know that that does slow the absorption of that carbs and keeps to it minimizes the spike. I did not do that purposely. It's something that that's how I already ate, and it happened to be that it minimizes a spike.

Scott Benner 1:02:16
Interesting, yeah, you tripped on listen to your

Speaker 1 1:02:19
glucose goddess. And I was like, Oh, I already do that, and that's just the way that I eat, yeah?

Scott Benner 1:02:22
Not on purpose, not because someone told you, just dumb luck. That great.

Speaker 1 1:02:27
Yeah, I just felt it's nice when something actually works out on its own.

Scott Benner 1:02:34
Every once in a while, I like to just get lucky, if you don't mind, that's right, I have one, like, final question for you, do you think that the age you were diagnosed at helped or hurt? Like, what did your parents do that thing where they were like, she's an adult, or were they still very involved? Oh,

Speaker 1 1:02:49
yeah, my parents were very like, they were terrified and they were no help, is really the bottom line. Well, it didn't help that there's a lady my mom knows who two of her three kids were type ones, but they were like, they were young, and one was going through puberty, and, like, literally, the mom was sleeping in her bedroom trying to keep her alive. And so my mom was hearing all these horror stories. And then I'm like, in Texas, and I'm like, Yeah, I'm going to get my own apartment. You can't live by yourself. And I'm like, No, I'm getting my own apartment. Like, that's what I'm doing. Like, it's not, I'm not changing everything. Now, don't get me wrong, like, I make sure my blood sugar is fine. I'm going to get my own apartment. And so, like, I would come home and they would make something, and then I'm digging through the trash for the boxes to have a clue about carb counting and that type of thing. And I've been back in Jacksonville near my parents for like, 12 years, and it's really only in the last like four years, so four years out of 26 that they are consistently recognizing that we should keep the carb counts out for Stephanie.

Scott Benner 1:03:57
Okay, they're starting to figure it out now, yeah, that's the fifth coming along. Yeah, you never know. By the time they're 150 they might really have right?

Speaker 1 1:04:06
Yeah, no, but it definitely it was mine. I was the one who had diabetes. I was the one who had to deal with it, and I did. Now, it's also like, I feel like within my family dynamics, it's like, oh, you know, we don't really have to worry about Stephanie. She always lands on her feet. She finds a way to make it work. And so that's my and so with it, with diabetes, it was that I've been interested in dating, like some people, you know, it's like, it's your diabetes. And so you manage it however you do, and you let me know if I need to do anything. And then other people want to know all about it, and some of them want to overstep and and that's been different for me, because, like, my family has not typically been involved in my diabetes, so to have someone that I'm dating involved, it's like learning to let them be involved and then deciding, like, what are the limits to their involvement, and that type of a thing. Yeah,

Scott Benner 1:04:57
that's the thing you've been able to navigate. Okay. Yeah. Absolutely

Speaker 1 1:05:00
with my fiance. He actually, this year was his third year going to touch by type one with me at the conference, and he knew nothing of type one. And then once we started dating, he's like, Okay, so at my place, I need to stock Diet Dr Pepper, honey sticks, Skittles and Airheads, because those are what I used to treat lows, and then the Diet Dr Pepper, what I drink while my body is screaming at me to continue inhaling the kitchen. Instead, I give it diet doctor to calm it down. Yeah, shut up. I'm giving you something. It's, you think it's sugar. It's not really, I like that.

Scott Benner 1:05:36
You're just like, that's good enough. I'll marry you. Finally, somebody, somebody figured it out. So it's

Speaker 1 1:05:41
been, it's been really good. And I get the beginning, he's like, can you eat that? And I would, I'd like, look at him, like, I can eat whatever I want. I just have to plan for it, and I have to dose for it, as long as it's not poison. I'm good, you know. And so, like, for the first year of dating, he'd catch himself, and then there'd be times we'd be out to eat, and so, and I would ask, because someone's like, not sure if they're giving me the coke or the Coke Zero. And I'm like, yeah, no, I need you to be sure it's a Coke Zero. So I'm a diabetic and, you know, and then, like, then, because I said something about being diabetic, when I go to order my food, the Oh, so helpful wait staff decides to tell me whether I should or shouldn't have something. And then, but it's been nice that my fancy is like, no, she can eat anything, you know. So it's nice that I don't always have to be the one stepping in to advocate. So it's been really nice to have someone else who's quote, unquote, in that fight, right?

Scott Benner 1:06:29
I'm not going to waste the insulin or my carbs on regular Dr Pepper.

Speaker 1 1:06:33
That's all No, it's not worth it to me. Yeah. Now there are some things that are worth it that is not one that's worth it for me,

Scott Benner 1:06:39
right? No, no. It makes a lot of sense. Well, Stephanie, I really appreciate you doing this. You are one of the few people that I've interviewed that I've met in person, so that was interesting for me. Normally, I just, I can't even picture the person I'm talking to, but today I could. So this is kind of fun. Thank you. That was good. Yeah, yeah. I appreciate this. Hold on one second for me. Okay, okay. A huge thank you to one of today's sponsors, gevok, glucagon. Find out more about G vo hypo pen at G VOQ, glucagon.com. Forward slash juice box. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com forward slash juice box, a huge thanks to a long time sponsor, ever since 365 learn more and get started today at ever since cgm.com/juice box, Arden has been getting her diabetes supplies from us med for three years. You can as well us med.com/juice, box, or call, 888-721-1514, my thanks to us, med, for sponsoring this episode and for being long time sponsors of the Juicebox Podcast. There are links in the show notes and links at Juicebox Podcast com to us, med, and all the sponsors. Are you starting to see patterns, but you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less, a little more? If you're starting to have those thoughts, if 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 I want to thank you so much for listening and remind you please subscribe and follow to the podcast wherever you're listening right now, if it's YouTube, Apple podcast, Spotify, or any other audio app, go hit follow or subscribe whichever your app allows for and set up those downloads so you never miss an episode, especially an apple podcast, go into your settings and choose download all new episodes. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording doing his magic to these files. So if you want him to do his magic to you, wrong way. Recording.com, you got a podcast? You want somebody to edit it? You want rob you?

#1385 Estate Sale

Katy, living with T1D since age 11, shares her journey through inadequate early care, insurance struggles, GLP medication challenges, and managing life with two kids, including one with autism.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Welcome back, friends to another episode of The Juicebox podcast.

Katie has type one diabetes and a couple of kids got a bunch of other stuff going on. She was diagnosed when she was 11 years old. But the reason she came on the show, it changed because she lost her insurance. You'll see what I'm talking about as you listen 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 when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box.

This episode of The Juicebox podcast is brought to you by my favorite diabetes organization, touched by type one. Please take a moment to learn more about them at touched by type one.org on Facebook and Instagram. Touched by type one.org check out their many programs, their annual conference awareness campaign, their D box program, dancing for diabetes. They have a dance program for local kids, a golf night and so much more. Touched by type one.org. You're looking to help or you want to see people helping people with type one. You want touched by type one.org. This episode of The Juicebox podcast is sponsored by cozy Earth. Cozy earth.com use the offer code Juicebox at checkout to save 40% off of the clothing, towels, sheets, off of everything they have at cozy earth.com this episode of The Juicebox podcast is sponsored by the continuous glucose monitor that my daughter wears the Dexcom g7 dexcom.com/juice box. Get started today using this link, and you'll not only be doing something great for yourself. You'll be supporting the Juicebox podcast. My

Katie 2:44
name is Katie. I live in Florida. I'm 49 years old, and I've been a type one diabetes for 38 years, almost 38 years since you were 11, since I was 11 years

Scott Benner 2:54
old. Damn. Be impressed, everyone. Okay, so hold on a second. Diagnosed at 11, type one. Do you have any other auto immune issues? No,

Katie 3:02
I don't. Nothing celiac. No, my daughter does have a gluten allergy. She has not been tested for celiac, but she definitely has an allergy.

Scott Benner 3:15
How about even eczema?

Katie 3:18
I do have eczema. I did have it pretty bad as a child. I've kind of grown out of it. It's gotten a lot better. Okay,

Scott Benner 3:25
um, do you have like, bad seasonal allergies, by any chance? Not

Katie 3:30
really bad. No. Cool, but you have them? Yeah, I would say so. All right,

Scott Benner 3:34
how about in your family line, your mom, your dad, your grandmother, your grandfather, stuff like

Katie 3:38
that. No, both my parents are treated for type two. My brother is the only other one with an autoimmune disorder. He has alopecia universalis. Yeah, so he has no hair anywhere on his body.

Scott Benner 3:56
Is that that means, like universally he has is that what that's supposed to mean?

Katie 4:00
Yep, no hair anywhere his whole life. No, he got that in his 30s. He started losing his hair in his 30s. That must have been a shock. I think it was. It started coming out in perfect circles. Think it started with his mustache and his eyebrows, and then he noticed it in his hair, and then it just started falling out all over. If

Scott Benner 4:24
that happened to me, as shocking and as upset as I would be, and how much, and I have a ton of empathy for your brother, I know for certain I would make a joke to somebody and say, I think tiny aliens are landing on me at night and creating cross circles. I would, yeah, he's

Katie 4:40
the oldest, 56 I believe there's four of us all together, and I'm the youngest. He's, yeah, he's, I believe he's fairly fine with it now,

Scott Benner 4:50
yeah, that's crazy. I mean, it's not crazy. Also, it's an autoimmune issue, right? It is, yeah. So how about his kids? Do they have any autoimmune stuff?

Katie 4:59
He doesn't have any biological kids. He has two step sons. I

Scott Benner 5:03
see okay. Now I want to start here by saying, also, you have one of those names that I feel like it's trying to trick me, and I wasn't listening very closely at the beginning when you introduced yourself. So is it you say Cathy or Katie? No, it's Katie. Katie. Okay, yeah. I mean, I thought it was, but I've had people come on with your spelling, and they're like, it's Kathy. And I'm like, I it isn't

Katie 5:26
no no Katie. I've gotten on my whole life, though, okay, when Katy Perry became popular, that was when people stopped calling me Kathy. So it was way later in my life,

Scott Benner 5:36
if only she could have pulled together sooner. You know, people started getting it right for me. Yeah, she said something shocking in an interview the other day. It's so shocking that I won't mention it here, but I was like, I can't believe you said that out loud. Nevertheless, if people have heard it, they're gonna go like, Oh, I know she had something to do with the dishes and Orlando Bloom. I won't say anything else. Now, I'll have to look it up. Yeah, don't, don't, don't look too closely. Okay, what I was going to say is, I don't know how long it's been now since I started saying, like, Hey, if you know you're using a GLP medication, you have type one, you should come on the podcast. I thought I was going to get a couple of people, you know what I mean? Like, I just didn't imagine that so many people would come forward because it's off label. It's just happening over and over again. So I want to learn a little bit about your journey, but then, you know, we'll get into what you're doing now, obviously, but I appreciate you reaching out. And, you know, I hope for people listening, they're not like, oh God, every week there's somebody on using a GLP, but, like, I don't control the flow of that. Like, you know, it's sort of the same thing as, you know, if people are like, oh my, you know, this week, everybody that he had on was like, using a T slim, or everybody he has on is using like, a Dexcom or an omnipot, whatever I have the people on who reach out to be on. So, like, yeah, like, I don't control the flow of it. But let's start at the beginning for a second. You're 11. You remember your diagnosis at all? The Dexcom g7 is sponsoring this episode of The Juicebox podcast, and it features a lightning fast 30 minute warm up time that's right from the time you put on the Dexcom g7 till the time you're getting readings. 30 minutes. That's pretty great. It also has a 12 hour grace period so you can swap your sensor when it's convenient for you, all that, on top of it being small, accurate, incredibly wearable and light, these things, in my opinion, make the Dexcom g7 a no brainer. The Dexcom g7 comes with way more than just this, up to 10 people can follow you. You can use it with type one, type two, or gestational diabetes. It's covered by all sorts of insurances. And this might be the best part. It might be the best part alerts and alarms that are customizable, so that you can be alerted at the levels that make sense to you. Dexcom.com/juice, box. Links in the show notes, links at Juicebox podcast.com, to Dexcom and all the sponsors. When you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful. If you're looking for a last minute holiday gift that doesn't feel last minute, check out cozy Earth and use my offer code to save 40% off of your entire cart that's going to be the sheets, the towels and the clothing, whatever you buy from cozy Earth com, you will save 40% by using Juicebox at checkout. That's all you have to do, is put in my code Juicebox at checkout and you'll save 40% and I'm talking about everything from dryer balls to the towels that I use to you know what I mean? They've got towels. They've got clothing that is super comfortable. I'm wearing the sweat pants right now. They're awesome. I'm gonna go out later today and use my pullover from cozy Earth also awesome. This stuff is temperate, right? It keeps you warm, but not hot. It keeps you cool, but not cold. Every way you want to be is the way cozy Earth wants you to be the sheets are a joy to sleep in. The towels, like I said, get all of your bits and your grooves and oh my goodness, the clothing, cozy earth.com. Use the offer code juice box at checkout to save 40%

Katie 9:13
I do. Yeah, I do. I remember specifically what stands out in my mind, is going to the movies, ordering M, M, S and a Coke, and getting up, I don't know how many times to go to the bathroom. My stomach hurting, and my mom saying something's not right. You shouldn't be paying this much. She said that I started wetting the bed shortly after that, and her knowing that that wasn't something I should be doing at 11 years old, she had enough knowledge of type one to know that that's probably what it was. She bought the little sticks that you had to pee on, and mine turned really dark, so she made everybody in the house pee on one nobody else's did. And except for hers, was a little bit darker than everybody else's, which, of course, she found was because she was on her way the developing type two. She got me into the pediatrician pretty quickly. They did the glucose test. They had me drink the nasty, you know, drink, and tested my blood sugar one time, probably a half an hour later, and immediately told her that they needed, I needed to get to the hospital right away. We lived in Washington State at the time, and we lived across the Puget Sound and needed to take a ferry to Seattle's Children's Hospital. So they told her that we needed to be on the next ferry over. So we went home, packed a bag, and we're on the next ferry. She called my dad, told him to come home from work. I remember asking her if I was going to die, and she told me she didn't know. She's like, I don't think so, but you I don't know. Can I

Scott Benner 11:01
say something to any parent listening? If your child says, Am I gonna die? You go, No, of course not.

Katie 11:09
I don't remember feeling like, Oh, wow. This is awful for me. I just was like, wow. I'm getting a lot of attention. You know,

Scott Benner 11:17
I'm still laughing about your cop saying, No,

Katie 11:20
I don't know. So I, I was in a room with four other girls, and, you know, gave me insulin. They gave me a sponge to practice on with saline and a sliding scale and all the things, and I started learning how to give myself shots.

Unknown Speaker 11:37
Is this 1986

Katie 11:39
1986 and they told my parents from the very beginning, this is her disease. She needs to learn everything about it. And I think I probably got a shot from someone else, maybe once. But other than that, I had to

Scott Benner 11:56
do it all describe using the sliding scale to me if my

Katie 12:00
blood sugar was in a certain range, I took this much insulin, and I was on regular and NPH, I can't remember exactly how much, but it was so many units. If I was between, you know, like 80 and 150 you do a

Scott Benner 12:17
test, and if you depending on where you were you'd use a certain amount of insulin. How often every day did you do that?

Katie 12:24
I tested before each meal? No, I didn't. I don't think I tested before lunch. I think it was only in the morning and then the evening. Okay? And that was it. My

Scott Benner 12:37
point is, is that phrase, this is their disease. They have to understand everything about it is a is a phrase that comes from a time when what you need to know was you tested twice a day, then you looked at the piece of paper, and then you gave yourself a shot, yeah. And somehow we've carried that forward. Now there's all this information and faster acting insolence and different ideas. And there are still some people who will look at an 11 year old and go, this is on you. And I'm like, wow, yeah, yeah, different world, you know what? I mean, yeah, it's easier in the long run because of the technology, but in the short term, there's a lot more to learn.

Katie 13:09
Oh, yeah, yeah, okay, and there was a no sugar. I mean, I wasn't allowed any sugar. No sugar allowed.

Scott Benner 13:16
Oh, fun. How long did that last? I would

Katie 13:19
say probably into my 20s. Oh, so

Scott Benner 13:21
you were very low carb. No,

Katie 13:24
I wouldn't call it low carb. Oh, so you definitely had, oh, yeah,

Scott Benner 13:28
yeah, just not a lollipop,

Katie 13:29
right? Gotcha. No sugar,

Scott Benner 13:32
no pure sugar, not sugar in something else that we don't care about. So

Katie 13:36
cake, no cookies, no

Unknown Speaker 13:38
cake. You're saying nothing fun.

Katie 13:41
I can have chips, so I definitely like the salty stuff.

Scott Benner 13:44
Isn't that fascinating that they would tell you there's no sugar, but carbs are fine, right? Yeah, very strange. Well, not strange, but for how people understand things, not that also simple, sugars would spike you more drastically and probably, and this is me guessing a little bit, but on that insulin, you probably weren't seeing as much resistance. So, right? You know what I mean? Maybe that insulin had a had an easier time with a piece of bread than it would have with a, you know, with a push up pop or something like that. But all right, so fair. Fair is fair, but you live like that into your 20s. Do you go to college? No, did diabetes have anything to do with

Katie 14:18
that? No, I don't think so. Okay, I don't think so. No, I was pretty independent, and I think and my parents, really, they were big believers, and you can do whatever you want to. So we moved to Florida when I was 14, so I got a new endo when we moved here, through Jocelyn diabetes, and I actually kept that endo until about a year ago. I had the same endo from the time I was 14 years old until a year ago.

Scott Benner 14:47
Really? Yeah, hindsight tells you that was a good idea or a bad idea. I'm

Katie 14:51
gonna say bad idea. Okay, why? He literally let me skate by on being just good enough for a long, long time. So he let me make pretty much all my adjustments and my own decisions. And I wouldn't say until I really started listening to the podcast and really started understanding that the actual process of my own disease and becoming my own advocate, that I was like, I'm going to take over and adjust this myself and do things myself. How

Scott Benner 15:24
long ago did you find the podcast?

Katie 15:26
Probably about three years ago.

Scott Benner 15:28
Oh my gosh, yeah.

Katie 15:30
So I lived with an A, 1c in the sevens, the eights for most my life.

Scott Benner 15:38
Yeah. Do you have any anything going on now, because of that, I am programmed not to say complications. Can I tell you something? Yeah, Katie, I'm just going to share something here that I think constantly and I never say out loud. I'm going to say it to see if I can get rid of it. I tried, for some reason in the past, so hard not to say complications, that when I want the word, I can't even find it in my brain, I've strong arm myself into not saying it. And I don't want to do that. I want to just say, like, Do you have any complications?

Katie 16:06
I understand that, because I do the same thing in the line of work. I'm in I don't like to say disabilities, so I understand that too. I try not to say that. I don't like it, yeah, so I do the same type of thing, but because

Scott Benner 16:20
I don't want to, I very firmly don't, do not believe in scaring people into taking care of themselves. And I think that, like, if that's the next question I ask, it could come off as trying to scare the people listening. But I I'm just asking because you had an A one saying the seven and eights for a really long time, and I want to know what the impact of that was.

Katie 16:42
The only thing that I am dealing with now, and I absolutely hate it, is my is frozen shoulder. It definitely hurts all the time. I

Scott Benner 16:54
have heard it described in a way that doesn't make it sound like the tiniest bit of fun. Have you ever had them work on it in any way? No,

Katie 17:00
I have gone through physical therapy for both of them. The biggest benefit I've gotten is through a chiropractor. That's what I've benefited the most from. Okay, so, but, yeah, I do my stretches and everything, but I do see a chiropractor regularly.

Scott Benner 17:17
Okay, did they do that thing where you make a chicken wing on the side, and then you push your elbow back, and they pull on your shoulder. I haven't done that. How about how about the one where they you bend your fist up towards your shoulder, and then they grab your elbow and pull it back.

Katie 17:32
That sounds horrible. I gotta just tell you

Scott Benner 17:34
I have and I'm not alone, because I see the views on the YouTube channels. But Scottie loves to watch somebody get adjusted by a chiropractor on the I do too. Yeah, I do too. It's funny because never to the point where I'm like, I'm gonna go, like, I'm gonna go hunt one. It's just there's something about it that I'm just like, Oh, I wonder what that is like, the one now that I in my wildest dreams, I can't imagine is good for you. They put the victim on a table, on their back, and then pull their head up straight. Have you seen that?

Katie 18:05
Yeah, yeah. I look at almost like they're gonna pop their head off. Yeah,

Scott Benner 18:10
yeah. It's so rudimentary, they'll like, wrap a towel around their neck, grab the towel and, like, yank up on your and as I see it, I have two distinct thoughts. That does not look safe and, oh, I would like to try that. I know that's ridiculous, but anyway, yeah, but your chiropractor helps you. You go to adjustment. It helps your shoulder. Yeah. So my next question is, is, did you go to therapy before or after you found the podcast?

Katie 18:35
That's a good question.

Scott Benner 18:36
You know? Why I'm asking I'm wondering if lower, more stable blood sugars. Like, I don't know if the frozen shoulder is something that's now happened and it's there, and you can't, I think it is, and you can't really change it much, because they break away the because that whole part of that therapy is, like, they move your arm around a lot, right to just kind of break, break it free. And it's very painful, from what I understand. I

Katie 18:58
think I started going probably before my mom had a frozen shoulder, and so I knew that's what it was. And that happened probably five years ago. The first one okay, and it resolved, and then the second one started. And every time I've gone they've said, Well, what did you do to injure it? And I've said, nothing. I didn't do anything. I'm a type one diabetic. I kind of, it's par for the course. I knew this was probably going to happen to me. Yeah, it's a current issue. It is with one of them, my right side, right now. Okay, yeah, which is kind of brings up another thing is, you know, going to the doctor, if you go to a just a general practice doctor or a new doctor at my age with my gray hair. I don't know if you remember, we just met on Saturday. Of course, I don't. And they see me at my age and I say, I'm a type one diabetic, they kind of look at me like, Are you sure you know? Like they don't believe you if somebody at my age or your type one, are you sure you're. Type one, and they look at my chart again. Oh yeah, I guess you are. It's like, well, what? It's kind of they don't see us often. It's like, we grow up, you know? And I'm a type one, and I have been since I was 11. I know what I'm talking about. So this frozen shoulder, when I say it's this way because I didn't injure it. It just is something that has happened to me.

Scott Benner 20:24
I've had elevated blood sugars for 30 years, right? Yeah, I don't know.

Katie 20:29
They just a lot of times, don't quite get what I'm trying to say,

Scott Benner 20:32
yeah. And so you find yourself having to re explain it all the time, all the time, yeah, should we take a left turn here and talk about your estate sale

Katie 20:42
story. Oh, sure,

Scott Benner 20:44
I love this. Yeah, this is awesome. So I don't want to interject. Just tell it from the beginning. Well,

Katie 20:49
I was pulling up to an estate sale that's really close to my house. I happened to see a woman and her husband walking out and on her jeans looked like a pager. And I thought, nobody in 2004 or 24 not 14 has a pager. And I said, that's an insulin pump, and it looks like mine. And my son was with me, and I said, that is a tea slim. And I rolled my window down, and I said, I have the same pump as you. And she grabbed it. She said, No way. She came up to my window and she said, You have type one? And I said, Yeah, I do. And I pulled mine out. I wear mine in my bra, of course. And and so we immediately started talking, and I said, Do you listen to and she finished my sentence, and she said, The Juicebox podcast. And so then we exchanged names and phone numbers and became Facebook friends, and we met for dinner about two weeks later and took that picture. And of course, while we were in that restaurant, talking and speaking the same language about diabetes and everything. There was a man in the restaurant that just let out the biggest art ever and just shocked us, and we couldn't stop giggling. And so I had to write that on the Facebook page, because I thought it was so funny that, I mean, we talk about bodily functions on that page anyway, so why not share it and and then add that picture of us? So I thought it was really funny, and I was happy to see that everybody else thought it was really funny too.

Scott Benner 22:31
Oh yeah, no, it was just terrific. I'm wondering, How frequently do you see other type ones out in the world?

Katie 22:35
It made me kind of wonder how often we have ran into each other, because we also found out her name is Laura. We also found out that we don't live very far from each other at all, and we do have friend, a friend in common. So, I mean, in Jacksonville is a pretty big city, so we must have seen each other more than you know, more than once. So it's just

Scott Benner 22:58
fascinating, because you're similarly aged. Am

Katie 23:00
I right? We are. Yeah, we're only a couple years apart, and even

Scott Benner 23:03
though you're, you're younger, you both have like, white hair. Yes,

Katie 23:07
a lot of people said we looked we look alike. I don't think we look alike, but yes, we both have gray hair. Yeah, we're, we're probably just two years apart, but

Scott Benner 23:16
you don't have like, old lady kinky gray hair. No, you have that. You can't. You have that because my wife's hair looks like yours. It has, yeah? It's like, silvery, yeah. Like, people look at it, they're like, Oh, my God. How did you accomplish that? How can I do that? And she's like, Oh, I just stopped dying my hair one day. And this is what happens,

Katie 23:32
exactly, genetics. Yeah,

Scott Benner 23:34
it's interesting. But what's more interesting is you don't see type ones out in the wild that often you see one. You speak up, because you know she's got your pump. And the two of you listen to this podcast. But when you said, Hey, do you listen to she knew what you were saying and completed the sentence? She did? You have to everyone listening for a second. Has to put yourself in my shoes when I hear that story, because I'm like, What the hell it's one thing to know the podcast is popular and out in the world and everything, but you really do limit the percentage of chance that two of you are gonna know what it is and not just know what it is, but have it so top of mind that if somebody says, Hey, do you listen? And while diabetes is in your head, you're like, Oh my God, they're gonna say Juicebox podcast. Like, that's crazy to me. Yeah, yeah, yeah. I really appreciated you sharing that, and then you came to touch by type one last week I

Katie 24:25
did, and I went the the previous year as well, and I did just get the notification of when it's going to be the year after. So I'm pretty excited to go again, and it's only a couple hours away from me, so it's easy for me to go, and that's fun. Yeah, I just

Scott Benner 24:41
saw them announce it on their social media, and I jumped on and said, Hey, I haven't unpacked my bag yet from this one like slow, the person who runs the whole thing, jumped on and she said, My bag's not unpacked yet either. A lovely event, and they do such a wonderful job putting it together. Yeah, yeah, it's really something. But, but. Was nice to meet you in person like that. That was awesome. If we met the year before, I apologize for not knowing that I saw you

Katie 25:05
last year, and I think I talked to you, but I don't know that we talked much. Okay, I think I was fairly new to the podcast then. So, okay,

Scott Benner 25:14
so then explain to me, then if you've been listening to the podcast for maybe a year or a couple of years, maybe yes, right? And you've had diabetes your whole flipping life. How do you turn on a podcast made by a guy who doesn't have diabetes, right? Fair enough. My daughter has it, and I've been, you know, helping her take care of it for a very long time and all. But like, how do you turn that on and think, like, Oh, I'm gonna listen to this. Why don't you think like, this guy couldn't possibly understand my life? Or, how do you even know you need more so many questions in there. I'm so sorry. I'm unclear. How did you know to look for something like what was forcing you to go out and look for something that's my first question. Let's

Katie 25:51
see. I think part of the reason is because I am a parent of a child with and here's the word that I said, I don't like to use, I'm going to say different ability that is 22 years old, that was diagnosed at a young age, and I learned everything I possibly could about his disability. And so I then went into the field of autism and learned everything that I could, and now try and help other kids, and he is very well equipped in his life, and so I kind of knew that I could listen to you, because I kind of did what you are doing. I does that make sense? You're

Scott Benner 26:47
out there helping people with autism, and you're not. You don't have some fancy degree or have and I don't have it, right,

Katie 26:54
right? So I taught him to advocate for himself, but I never advocated for my own self. You know what I mean. So I thought, why am I not doing that for myself? If I did, if I instilled it in him, I need to take it back for myself. You're

Scott Benner 27:11
aware then that your care is not all it could be exactly. And your whole adult like, you're married, right? You have other kids, or just one. I have two, two kids, two kids, yeah, two kids. You're married. You've had diabetes for three plus decades, almost, you know, almost four, right? You know that entire time I could be doing better for myself. Why don't you? Yeah,

Katie 27:30
I mean, I wasn't doing horrible. No, no,

Scott Benner 27:33
and I'm certainly not saying you are. I'm saying, if you thought there was sealing What stops you from reaching for it?

Katie 27:38
I don't know, maybe just the lack of self love, you know, just not just trying to take care of everybody else, maybe, which I think a lot of mothers do.

Scott Benner 27:49
Yeah, you like yourself, though. You're not saying you didn't like yourself. Oh, I do like myself. You're just saying you were directing that, that care and concern onto other people. Oh,

Katie 27:58
definitely. Okay, yeah, yeah. Yeah. Okay, so you

Scott Benner 28:01
decide, listen, I'm gonna tell you the same thing. Arden went off to college, and I said to Kelly, I'm like, I'm gonna go to a doctor and say, Hey, can you help me? Like, you know? And when I said it to the doctor, I said, Look, I got both of them off the college Damn. And have a heart attack. You know what I mean? Like, I mean something's, something's wrong with my body, you know, I knew that prior, and I would only reach for help if I was in a dire situation. It was interesting up until I just decided, like, Okay, I did the thing. I got everybody off, like, they're in reasonable shape now, like, you know, can I help myself a little bit? So that's awesome. When you're searching, what do you search for? When you decide, like, I'm gonna see if I can figure out more about this.

Katie 28:37
I went to the doctor that I had, you know, that I had for 30 years? And I said, he was kind of like your a 1c is it could be better, he had told me. And I said, Who, what pump, because I was on Medtronic for 25 years. And I said, Who has the best a 1c what patients have? What pump gives them the best a 1c I said, because I can't get it with Medtronic something's not right. I'm trying, and I keep throwing insulin at these with this CGM, and it's like, it's just not I keep gaining weight, and it's just not working. The CGM is, I'm constantly calibrating it. It's not right? It's not giving me the correct readings. And so he said, the T slim and and the g6 I think, was what I had at the time. And I said, Okay, well, I want to switch over to that. And he said, Okay. And, I mean, he pretty much do whatever I asked. So he gave it to me, or wrote the prescription, and I got it, and immediately everything started coming down. And was better. I went on Facebook and I joined the group for that T slim, and someone on there said, start listening to this podcast. And that's how I found you. And so I started listening to you, and that's when everything else started clicking into place.

Scott Benner 29:59
That's. Somebody said, you should try this podcast, yes, yeah,

Katie 30:04
yeah, okay, great. And then the glps came out, and again, I learned about those. And I said to my husband, who has type two, I said, Why don't you ask your doctor if you can get on these? And he did, and he started taking them. And so then I went to my doctor. And I said, hey, could I take these? And he said, Sure, I don't see why you can't take take them. And he wrote the prescription, and I started taking them. You

Scott Benner 30:28
were able to qualify for weight, I'm assuming. So, okay, so your husband qualified as a type two, though, right, right, right. If your BMI, I think, is over 27% you'll qualify with insurance for weight reasons. Did they give you, we go V or Z bound, or did they give you? Gave

Katie 30:44
me mongero? They did. And he, as he wrote it, he said they might not cover this on insurance because you're not a type two, but give it a try. And so I did, and they approved it, and they approved it for a year, and then they stopped approving it. Okay,

Scott Benner 31:02
we'll get to that. So you start taking it. I don't need your weight, but like, just keep your starting weight in mind, because I'm interested in how much you lost, if you lost any along the way, and everything else that happened. So when you start shooting it, is it point two, five? Yes. Is that how that wait? Is that how manjarna is? Yeah. Okay. And you do that for a month. I

Katie 31:23
did it for more than a month. I was on the starting dose for probably, oh, I did keep a diary of it. I'm sorry I didn't have it right here

Scott Benner 31:32
with how come the doctor didn't move you up and up? Were you not in Congress with him?

Katie 31:36
He told me, just let me know when you want to move up. Just send me through the My Chart thing, just send me a message. I just moved up slowly. Yeah, I want to say I was probably on it for about three months, the starting dose, and then I moved up, yeah, to the next one. So

Scott Benner 31:51
tell me, what was the, what was the initial impact when you started taking it? I'll find out what the dosing schedule is for Montana while you're doing that.

Katie 31:58
I would say it was, it was pretty quick that I needed, that it impacted how much insulin I needed. I went from about anywhere from 100 to 120 units a day to probably around 60. Let me tell you, I did not go to him or have much communication with him about dropping my basal rate, or how much my carb ratio, or any of that, I did it all on my own. I started just dropping it little by little, and then as my doses went up, I started dropping it more and more and more.

Scott Benner 32:37
Okay, so just let me clarify for people, because I was thinking of wegovy or ozempic When I said point two five, it's 2.5 milligrams, 2.5 right? Is the starting dose. It goes from 2.5 to five to 7.5 to 10 to 12.5 to 15, right? I do 12.5 right now. So you start using it your insulin needs drop in half. Yes. Do you have PCOS or no? Did you have a fair amount of weight to lose?

Katie 33:06
I would say I could stand to lose about 100 pounds.

Scott Benner 33:10
Okay, so do you think you had, like, insulin resistance, or were just using a lot of insulin because your body

Katie 33:14
mass? Yes. And I would say also insulin resistance. And I would say a big part of that was also menopause. I was hitting that at the same time.

Scott Benner 33:23
Is it helping with that? Yes, I hear stories about it helping people with perimenopause. Yeah, okay, you stay on it for three months. How much to weight did you lose the first three months?

Katie 33:33
I would say I lost an average of 10 pounds a month snap.

Scott Benner 33:36
I've got the power awesome. Did you notice at touch by type one this weekend, that at the opening ceremony, which is not really open, it's the opening talk, they ran a video from the previous year, and that I was briefly in that video, and that I look significantly different now than I did in that video. Yes. Wasn't that weird? Yeah, yeah. Because last year I thought, Oh, I look good here.

Katie 34:03
My daughter said that too. She's like, he's lost a lot of weight. Yeah, no

Scott Benner 34:06
kidding. And I had already lost a lot of weight because I showed up at that thing last year, and I was like, Look out people. It was really something like I sat there when I popped up in front of myself on that screen. I thought, Oh, I did not expect to have that reaction. I looked and I went, ooh, oh, I wasn't anywhere near where I am. Now, super interesting. Yeah, that's great. Do you have the same feeling, though, like you lose the first 10 pounds, you're like, Wow, all right, then it's 20, you're like, I look great. And then every time you lose more, you look back and go, What was I thinking? Yeah,

Katie 34:35
it's pretty exciting. Yeah, no, really is. It's hard to lose weight, you know, I do think that being diabetic, it kind of it works against you a little. I mean, it's difficult. It really is. I have had success in the past with Weight Watchers. Was helpful. I I've I've used that before, and I've done like a. Low carb diet. Those are always helpful, but then they, to me, aren't sustainable, because I end up just going, oh, forget I want bread or whatever, you know, like,

Unknown Speaker 35:10
I can't forget it.

Katie 35:11
Forget it. I'm starving myself in

Scott Benner 35:14
all the other ways that you had done this, had you ever lost 30 pounds in three months? No, no. I mean, it's not that it can't be done, but, man, it's hard. And you start, for me, I start looking at the clock. I'm like, hey, you know, like, when I went to the doctor at first about this, I was probably 51 and I was like, I don't have a whole lot of time here. And I know people think that's morbid, but you know what I mean? Like, yeah, what do I got here? Like, I mean, I'm gonna be 73 in 20 years. You think I'm gonna go out and travel the world and play pickleball on Thursdays and whatnot when I'm 70. Like, I hope so, but I can't count on that. Like, now I'm the time. I want to get to it a little faster. Now. Would have been nice if I would have started when I was 20, and never been in this position, I understand. But I also look back now and I see all the other things that the Manjaro, yeah, that juice, the good juice, we'll call it, like all the other things that I'm seeing it do for me that are well beyond just my weight, right?

Katie 36:06
You know, I know, and I feel that way too. So at the beginning, it is super exciting. You're like, I look so much better. I look back at the pictures, because now I've lost 50 pounds, a little over 50 pounds, and I'm like, I look so much better, but I also am like, I am amazed at how much better I feel and how much better I know that I am inside. You know how much my health is has improved, and how much less insulin I'm taking and how much I mean, not that that is a factor of health, you know, but for me, I need it, you know. Like you say, I need what you need, what you need, but I am taking so much more. It's better care of myself and on a whole. But now I'm running into this roadblock where my insurance is not going to cover it. I can still get it. My doctors will prescribe it. It's not that, but I now have had to take another job if I want to pay for this.

Scott Benner 37:10
So your doctor will prescribe it, but your insurance won't pay for it anymore, correct? They won't cover it. Can I ask you, though, if you still have 50 pounds to lose, why don't you just ask him for zbound Instead of Manjaro, they

Katie 37:23
won't cover a weight loss.

Scott Benner 37:24
Oh, your insurance doesn't cover that. No, shitty insurance. Yeah, it really is. Who do we blame your husband? Yeah, okay, we'll

Katie 37:33
do that. We'll do that. Yeah, because he can give it I can't,

Scott Benner 37:37
Julie, he has type two, right? Fancy man, I've seen people get a dual diagnosis, type one and insulin resistance. So

Katie 37:45
I switched endos, and I asked the new and endo for that if I could have a dual diagnosis. And he said, Absolutely not. You're not a type two, yeah. And I said, I have insulin resistance. And he said, No, you don't i? And I said, Okay, maybe I need a new new, new Endo. Let's

Scott Benner 38:06
see running for post. So also, maybe that's not a good example, but you know what I'm saying,

Katie 38:12
my new estate sale diversity, she has a different Endo, and she's also on mangero. So maybe I

Scott Benner 38:21
feel like what you need is a switch to a different office. Yeah. What is he like? Isn't that funny that a physician could look and see that you've had all this success and all this benefit from something and then be swayed by the arbitrary rules of an insurance company? You don't need this because the insurance won't cover it. What does that mean? Anything? You know, awesome. Thanks a lot. When you were talking about feeling better, I found myself thinking that before, I used to think like, I was, like, a vital person in a body that was just, like, not operating well, like, you don't even, like, I'd run up the stairs and I'd be like, Yeah, I am a person who runs up the stairs you don't even, but like, I always used to think, like, I guess, I guess, just to be clear, like, I think, oh, for a fat guy, I'm really fast, or for a person who's overweight, I'm more athletic than you would think I would be. Like, you used to look at me and you wouldn't imagine I was athletic, but I was like, stuff like that. Not like, not like, on the level of my son, but like, you know, for for a guy my age, I quick and agile and stuff like that. And I used to just think of it as, like, this is my level of proficiency with athleticism, and, you know, that kind of stuff. And now that I'm the all that weight is off of me, I realized, like, that was, like, a fraction of who I was. Yeah, it's really interesting how much I was being held back by it. And I know some people are going to listen and be like, Yeah, you were fat and it held you back from being athletic. Like, I know that seems obvious now, and it seems obvious to me, but I wasn't eating my way to that scenario. Like my body just really did not intersect with food very well, and it didn't matter what food it was like, no matter how I ate, how little, how much. What kind quality of it my body would just, like, constantly, like, I would just always be holding water weight and adding weight, and I'd get heavier and heavier and and feel achy. Oh, my God, everywhere. It didn't feel good. I was tired. Like, you know, all that stuff, I take this stuff and all the things that people have heard me talk about, like, I can absorb iron now through my food. It's a big deal. I used to have to get infusions to not pass out my knee and my my feet. I used to have plantar fasciitis. Don't have that anymore. My knee hurt. My knee doesn't hurt anymore. My back used to be super stiff. My back is not stiff anymore. I feel bad because everybody bought me this chair because my back was stiff a few years ago, and now I still have the chair and I don't have the stuff back, but I appreciate it nonetheless, like all these things that changed, and I do think a lot of them have to do with just inflammation, which is probably some sort of an immune response in my body, right? You know what I mean, and I brought it up earlier, but tell me how you feel like it may have impacted your Are you in menopause fully, or was it perimenopause?

Katie 41:03
No, I'm fully. It's menopausal. Yeah, yeah.

Scott Benner 41:07
What symptoms did that help with? I'm

Katie 41:10
not exactly sure I I think I was going through menopause. I think I was pretty much done with it. Before that all it started. I am not sure that it helped with the the weight gain exactly. I had hot flashes. I didn't have a spotting or anything like that. So I don't know that it helped too much with that. Yeah,

Scott Benner 41:37
well, in ways that you could, like see and some things I've heard from other people. First of all, losing weight is going to help, right? Because that fat impacts your hormone right? So if you get rid of some of that, you might have some better luck there with hormonal fluctuations, stuff like that. But my wife specifically said, like, the hot flashes, the night sweats, like that, stuff really alleviated. Yeah, on it. And she also has long COVID, oh, which is a thing that I'm sure some people are like, that's not real, but I've seen it. It's pretty real. When she started taking a GLP, a lot of her long COVID symptoms got much easier. That's good, yeah, very cool. And then there was this moment I forget exactly what happened, but for a moment, she a doctor asked her, not her Endo, not the person who gave her the GLP, but another doctor said to her, Hey, if you're having a different symptom, stop taking that GLP for a week. And she came home and she's like, they told me to stop taking the GLP. And I was like, Look, I'm going to tell you the same thing. I tell the internet I'm not a doctor, and this isn't advice, but I wouldn't stop taking that. If I was No, I wouldn't either, right? And she's like, No, let me just do what He said for, you know, a week. And I'm like, All right, don't listen to me, which I've been married for a long time. I was expecting that. And so she definitely doesn't listen to me about anything, and she probably shouldn't, in fairness, but she stops taking it, and, like, four or five days later, she's like, Oh crap. So many of her long COVID symptoms started coming back right away. And I was like, I told you not to stop taking that magic juice. So she's like, Well, I'm gonna, I'm gonna take it again on Saturday. I'm like, why are you waiting till Saturday? She goes, That's my day to take it. I was like, Oh my God, just take it on Wednesday. What do you mean? What do you care? She's too type A that she waited till Saturday, but she started taking again. It ramped back up in her system, and she said, all that stuff, stop. Wow, that's amazing. Pretty awesome. Like again, I think just, I think it's inflammation that it's impacting,

Katie 43:33
right? Yeah, now I only have one more dose of mongero, and then I don't have any more so

Scott Benner 43:42
tell me again you literally had to go get a a job to pay for just this stuff,

Katie 43:46
right? I I am a respite provider. I have been working part time. I'm a respite provider for military families who have children with special needs. It's kind of a hit or miss job. They just call me when they need me, and I go into their home. So it's like a home health type of job, yeah, but I have taken a full time job as a preschool teacher, and so I am doing that now trying to figure out if I'm gonna go and now pay out of pocket for mongero prescription, you know, because it costs $550 a month if I want to make, yeah,

Scott Benner 44:26
the price came down recently, but it's still like five or $600 is what I was gonna say, right, yeah. Have you tried telling the preschool just to send the money right to Eli Lilly? Maybe they'll give you a tax break or something,

Katie 44:36
or maybe I can just go work for Eli Lilly. I mean, listen,

Scott Benner 44:41
if they give you a job before they buy an ad on this podcast about manjarna, then I'm gonna be pissed. Oh, my word. Meanwhile, I don't expect that a pharma company needs to buy an ad for any of their drugs like I'm pretty sure that, you know, they gotta handle them 1000 different ways, and I don't need it or want it, but I'm only really sharing my. Experience with it, but it's been very positive. And I do want to say because it bears saying it doesn't work for everybody. Like, there are people who know do not tolerate it at all, and there are also people with type one who take it, who don't see a big benefit in their insulin needs, that that does happen sometimes, sometimes people take it and they're like, I didn't see my insulin needs change at all for you. I mean, you, you had a pretty significant I mean, would you say 120 a day to 60 a day well, and

Katie 45:28
now it's even less than that. I take about 35 a day now.

Scott Benner 45:32
So some of that need was for your body mass. Yeah, yeah. It's some of it was for other reasons. And, I mean, what are we kind of hearing from people when they come on the podcast sometimes is that maybe they have some beta cells working, but it's just kind of so I don't even know how to put this, very un technical, but like, you know, like, your insulin need is so great you're not seeing it. And then you you kind of alleviate the need a little bit through weight loss, through hormonal control that you're getting, and then all of a sudden, maybe you're getting some help from your beta your beta cells. All of a sudden. Like, who knows? For some people, I do

Katie 46:06
have some beta cells that are so that are working, right? I just had that all checked, yeah, it's

Scott Benner 46:10
my expectation. And the people who don't see a bump from it just don't have any beta cell production at all, like, like, from it. But that's me, I want to be very clear. That is literally just me guessing right out of my ass. So like, I'm I really don't know anything. I'm just talking to people and trying to put two and two together. But yeah, so you're so your insulin needs for from 120 into the 30s a day. Yeah? God, you must be happy about that, huh?

Katie 46:35
I am. And now I'm scared after death, though, because I don't know what's gonna happen. Yeah, I say I don't know what's gonna happen. What's gonna happen is I'm gonna be paying, like,

Scott Benner 46:45
here's what's gonna happen, and I'm gonna sell whatever I have to sell to get this stuff. And that's gonna be that, can't you just go to your doctor and be like, Hey, man, what do you mean? A dick for pretty much. Like, here look what happened when I take the stuff, I go from 120 units a day, to 35 units a day. When I take the stuff, I'm down, would you say 50 pounds? Yeah?

Katie 47:07
And I it's still coming off, happening, yeah, yeah.

Scott Benner 47:12
Why don't you're gonna stop me from getting this. This 50 pounds is gonna come back. I'm gonna be back to 120 units of insulin a day. And then you're gonna say to me, Oh, guess what? You qualify for this again, like, what are you being an asshole for? Like, or just go to a better doctor, I guess. But, yeah, Jesus, 600 a month. 612, 1824, 3036, that's $7,500 a year.

Katie 47:33
I know it's very depressing, it is. And the amount of money we pay in insurance is depressing. Also because, you know, I mean, we pay almost as much as our mortgage payment for the insurance that we have. Holy hell do you really when my, yeah, when my, I was gonna say, when my, when we got married, when I got married, 26 years ago, my dad told my husband, he's like, he said, make sure you are you sure you want to marry her. She's expensive. Make sure you always have good insurance.

Scott Benner 48:05
We've got other choices in the barn if you want to grab a different one, this one only eats the best Patty, just so you know, yeah, I just, I love your dad talking about you, like your cattle, by the way, that's awesome. And your husband didn't take him seriously, and he should have,

Katie 48:19
and he's still with me. He stuck around. In fairness,

Scott Benner 48:23
I once after I was married my my wife's father said to me, like we were in a big group of guys and somebody was giving me crap about something, and my father in law stepped up, and he goes, hey, hey, easy on him. He's, uh, he does good with her. I was like, Oh, God, what does that mean? I was like, this is awfully insulting to your daughter, but she is difficult. Nevertheless, I hope she'll never hear this. No. I mean, it's just, it's really upsetting to go through decades of toil, figure something out and then have somebody tell you, like, no, no. I don't think so. I don't think you can happen anymore. Are you just gonna go try the other doctor?

Katie 49:04
I don't know what to do. I've gone back and forth about it.

Scott Benner 49:08
Why would you not do that?

Katie 49:09
I should. I should, yeah, and I know who he is. I know who the doctor is. I've heard of him. Yeah,

Scott Benner 49:16
he's doctor. Your ass is gonna be skinny. Go talk to them. That's right. Yeah. Yeah. Are you telling me, is this like a doctor in a mobile home or something like that? Or no, no, okay, okay, there's not like gators out front and a sign and you're gators

Katie 49:30
everywhere out front, and that's what everybody thinks. Yeah.

Scott Benner 49:35
Are there not, isn't it just like boa constrictors and gators on the roads pretty

Katie 49:40
much. That's all you ever see on the news. Is

Scott Benner 49:43
that not true? You're like, I don't think that's true. I live here.

Katie 49:46
You know, when we moved here, my dad made us give our dog away because he said that the alligators would eat it. We moved here with a dog. We believed him.

Scott Benner 49:54
Your dad's like, I figured out how to get rid of that dog. That's

Katie 49:57
my dad. Yeah, I

Scott Benner 49:58
finally got, oh, you. Want the dog to beaten by an alligator, dude, you're like, No daddy, like, God, we're gonna have to leave it here. And where were you? Puget? Sound, where were you over there?

Katie 50:07
Yeah, we were in across the water from Seattle. Yeah, you moved

Scott Benner 50:11
as far as a human being can move, going through us, the US, yeah, man, and you've been there ever since, yeah, never left you like the Florida. No,

Katie 50:23
I don't have air. Why are you there? Well, my husband was born and raised here, so he,

Scott Benner 50:30
I don't know he's the problem. Again, you're saying, yeah, yeah, pretty much. Boys always a problem. I know I'm a huge problem. So for my wife, I know she looks at me like, if you weren't here, I feel like I'd be happier, and I and I'm like, she's probably right about that and all that. By the way, that's unspoken. She doesn't say it out loud. I just I read it in her eyes. Oh, my god, wow. When you came on, when you signed up to come on, you were signing up to tell a happy story about I found this medication. Yeah, about that,

Katie 51:00
and now it's sad. So I guess if anybody listening has any insight on making my insurance pay, or I don't know when in the world, their insurance companies are finally going to jump on board and realize or the FDA is going to approve it for us, I know that it's it's gaining popularity for type one.

Scott Benner 51:20
Yeah. I mean, I'm doing more than my fair share of trying to get the word out about it. So, yeah,

Katie 51:24
I know there's studies, but I don't know how long it takes for those studies to finally, you know, get be finished, to where it's going to be something that we all can get. I don't know how long that happens. It's disingenuous

Scott Benner 51:38
to some degree, because they've done so there's been two studies let me see if I can find them on GLP that were so successful, the FDA stopped them. I think the one was for kidneys that I'm thinking of. Hold on a second. I'm gonna, I'm gonna find this. This is me talking half out of my ass, okay, but it's something I know I've seen before. I just don't have all the details. There was, like, I think an ozempic study about that was for kidneys and Novo and semaglutide Kidney study early due to strong efficacy signals. Okay, now you can go find this story if you want, and read through it. But what I'm telling you is my takeaway was this was working so well that the FDA was like, Hey, this isn't even right to put people in a double blind study over we know this works. Start giving them the drug for it. Let's stop studying it. It doesn't need to be studied anymore, right? It's been that successful. And then there was one recently, GLP, 94% type two. These are just my Google terms. Ah, here it is. Tris appetite reduced the risk of developing type two diabetes by 94% in adults with pre diabetes and obesity or overweight. This is an article from August 2024 okay, they did a study on people with pre diabetes. It benefited 94% of the people in the study. They're not pre diabetic anymore. Wow, when a study is 94% positive, you just go, Whoa, and you don't mean you're like, my god, this is working overwhelmingly for people, if they take five seconds. This study I'm looking at, evaluated 1032 adults who had pre diabetes at randomization, and obesity or overweight for a treatment period of 176 weeks, followed by a 17 week off treatment period for 193 weeks total. The result from this surmount one phase three studies, primary analysis in 72 weeks, and all participants were published in Union medicine. It worked. Okay, yeah, right. Take 1000 people with type one diabetes, randomize it, put them on a GLP, and let's get going. Because look at this, three goddamn years to do you got to get to it here. I would imagine that the insurance companies probably aren't at the moment thrilled, because the more they can, you know, they got to keep paying for it. But I would assume too, is it? I mean, I don't know how all that works, right? But as it becomes more and more obvious it's working, the company is going to have to make more of it. It should get easier to make and cheaper to make, and hopefully that can help the pricing process a little bit. But I mean, Jesus Christ, if it's helping women with PCOS, and it's helping people with type one diabetes and type two diabetes and obesity and me and like, you know, iron. Like, why not? Like, let's go. You know what I mean,

Katie 54:34
right? And is it, it brings up all the conspiracy theories. Is it because they just want to keep us sick, you know, and all the things that people say

Scott Benner 54:43
for, I don't know who's trying to keep you sick or not, I think they just don't want to pay for stuff. That's true. Yeah, definitely true. Maybe a company that makes crappy food isn't super excited about it. I would that, I that, I have no trouble imagining that in a, in a in an office somewhere, somebody who's making, like, you know, cupcakes that are basically. Plastic, and they stay good on a shelf for 17 years. They're like saying good all these people on these GLP medications because I splurged this week. I didn't shoot my GLP on the day I was supposed to. I got bum fuzzled On the day. So last night I splurged. I had a splurge yesterday. Let me tell you what I did. I went to a local deli. I got a turkey and roast beef sandwich with provolone, and I had half of it for lunch and half of it for dinner. I was crazy. Okay, for a person taking a GLP medication that pretty much qualifies as like, oh my god, so it's got to hurt the junk food market, and some if enough people get on it, but yeah, I just want to say again, they studied over 1000 people with pre diabetes, and 94% of them benefited from it. So you're going to see fewer heart attacks, fewer strokes. You're going to see less type two diabetes. And look at all the good things it did for you so far,

Katie 55:58
right? It's impacting a lot of markets. Yeah, I

Scott Benner 56:03
don't know. I just don't, I don't want to see type ones hooking for their GLP money. You know what I mean?

Katie 56:10
I guess that's my next option. No, I

Scott Benner 56:12
wasn't saying, yeah. I'm just saying, like, people shouldn't have to go do what you're talking like, you had a job you really enjoyed, right? And you'd like to keep doing that, but now you're like, Well, maybe I'll go do this one instead, because maybe I can make more money to pay for my GLP. And I don't like knowing your like specific details, but if this thing's $600 a month, this job in this preschool, you know, I don't imagine it's a laying 6090 grand a year on your Ford. So like you're working that whole month to get the GLP and not have much left over. Is that right?

Katie 56:42
I have some, I mean, and I enjoy it. I do enjoy work

Scott Benner 56:46
at the job so, but it's a chunk of your income. Oh,

Katie 56:50
yeah, would definitely be a chunk, yeah, all right, yeah, yeah.

Scott Benner 56:54
See, that's just, I don't know. That's not right. You know, commiserate with anything else, like, as we learn more and more about it, like withholding it from people, starts to feel more and more like not giving them insulin, or not giving them their heart medication or something, right? You know, yeah, it just works too well to act like, oh, it's for the people who can afford it. Yeah, I agree, yeah, because there's plenty of people out there that couldn't just go pick up a job and shell 600 like we're we're teasing your husband for not providing but obviously, if, if you can afford to spend $600 a month on something that isn't your your base bills, you're doing okay to begin with. And so, you know, so there are plenty of people aren't doing okay to begin with. Could really use this medication? You know, I spoke yesterday. I'm actually gonna rush it out. It was so interesting. This 19 year old girl comes on the show. She's a college student. She literally, we did this from, like, her apartment at college. The interview she comes on, and she tells me about all of her problems, and it becomes obvious to me, like, as we're talking and I know you think, like, maybe you would have known this before you signed her up, but I didn't. She didn't have diabetes. She has hyper reactive or reactive hypoglycemia, or something like that, right? And I start picking through her, you know, her entire health history, and it's been bad. She's had a really terrible period since she was, like, 1314, years old, super low iron and ferritin passes out. You know, is getting B 12 injections right now because she can't stay awake. Like, all of these things are, like, wrong with her, and I'm like, what are they going to do? And there's no answer. Like, she's like, I don't know, you don't even mean, like, the doctors don't say anything. So I said to her, I'm like, you wanna do something weird? I was like, here, and I opened up a chat GPT window, and I described her to chat GPT, and then every time she told me something about herself, I entered it into it, and then asked it what it thought she should do it so remarkably, agreed with what I told her before I hit Enter, wow. I was like, here's what I think I would do if I was you. And I don't want to the episode's been out for a while, by the time somebody hears this, but I was like, she's on a proton pump, a hit burner for like, six years, I think for three, six years, it's clearly blocking like, so she's got these terrible periods. She's losing a lot of blood, and then she's taking a medication for her acid reflux that's keeping her from RE absorbing iron. I said I'd get off the PPI. You have to do it slowly. It's not as simple. You can't just, like I think, you're not supposed to just stop taking it all at once. I'd get an iron infusion. I would continue with the B 12 and infusions, digestive enzyme to your meals, to try to help your digestion, to see if we can't help clear up this probably what's pressure on your your esophageal sphincter, which is probably giving the acid, right? And I said, I'd like you to take a vacitol for your PCOS, which she also had, by the way. I said, all that. And the goddamn chat GT came back, and it was like, and it said, all the same stuff, wow. And I said to her, I'm like, I'll send this to you. Can show it to your mom. You know, I said, don't listen to me like I'm a guy on the podcast, like I'm sitting in the spare bedroom of my house right now. Just in case you're wondering, I was like, but I think you should look at all this, because your doctor's only throwing patches on your problems, right? Like he's never gonna get you to the point where you're just like, oh, I don't have reflux anymore, you know? And I even explained little things to her, like, she's like, I don't, I don't eat throughout the day. I have one big meal. I said, that's actually could be one of the reasons you have reflux. You have a big full meal, it pushes down on on that, that sphincter down there, and it kind of opens it up and allows the it allows the acid to come up through into your esophagus. I'm like, you could end up getting, like, Barrett's esophagus from that, which is pre cancerous, and, like, all this stuff. And she's on top of all that, completely exhausted. And I'm telling you right now, I'm gonna go out on a limb and say something that'll make me sound like a douche bag to somebody, but if she doesn't come on a podcast to talk to somebody about it, she's gonna live the next 30 years of her life like that, yeah, for sure. You know what. I mean, that's no good. And imagine they found all the answers for and then at the end, we're like, Ah, you don't need that, right? Just what happened to you? Oh, what are you gonna do rob a bank? I don't know. Aren't there bank Robbies in Florida all the time? Don't people ride alligators in and then rob banks, right, right, yeah, all the time, lasso them with one of those bow constrictors and you're on your

Katie 1:01:25
way right. Get away on a manatee

Scott Benner 1:01:31
like Aquaman in those old cartoons, low

Katie 1:01:33
manatee. Oh, no,

Scott Benner 1:01:35
he would have been on a big Sting Ray, right, right, yeah. Are you old? Nothing on my Aquaman reference or no, no.

Katie 1:01:42
Well, I am old, but I don't know, not that old. Is

Scott Benner 1:01:47
there anything we haven't talked about that we should have? Oh,

Katie 1:01:49
probably something pop the mind. Not really. What do you mean? Probably.

Scott Benner 1:01:54
What are you worried that we you worried we forgot something? No, I'm looking at your list. I feel like we handled it, I

Unknown Speaker 1:02:00
don't know. Struggle with my weight, type

Scott Benner 1:02:03
one for 37 years, 38 now, because it takes a lot to get on the podcast,

Katie 1:02:06
I didn't know what list you had. What list did I make? A list I have been

Scott Benner 1:02:10
living with, type one for 37 years. I've always struggled with my weight, with age and menopause came insulin resistance. I've asked my endo 35 years if I could try a GLP Med, and he very readily agreed, my blood sugars have improved, insulin needs have decreased, and weight has decreased. Okay, go. That's it. That was six months ago. Oh,

Katie 1:02:30
yeah, and now I have one shot left. Can you believe that?

Scott Benner 1:02:34
What milligram are you up to now? Well,

Katie 1:02:37
I went all the way up to 12.5 but I had, because when I moved up, I still had some left in the fridge that I saved. So if I moved up to 7.5 and I had a few left of five, then I just kept them in the fridge. And, you know, moved up, so what I have left in the fridge right now is five. So that's my very last one of the five. That sucks. It's almost like I weaned myself back down.

Scott Benner 1:03:09
Have you been gaining weight? Or has your insulin needs been going up? I have

Katie 1:03:13
not gained no, it actually, it hasn't. It's been fine, okay?

Scott Benner 1:03:17
I hope it keeps up, so we'll see. Let's be honest, it's not going to I mean, if it does, then God bless, that's wonderful. But I mean, you could run into that situation where you don't gain weight and a lot of your insulin requirements were because of your weight.

Katie 1:03:31
I hope so, and I'm not. I have no problem also going to a compounding pharmacy. I would do that too, and I think five was fine for me, okay. Is especially if I just want to maintain what I've been taking for the last month. You know,

Scott Benner 1:03:50
we're still losing weight, though, right? Very slowly,

Katie 1:03:53
just a little bit, like, maybe a pound every week, or Yeah, I found I

Scott Benner 1:03:58
stopped losing weight at this point, yeah, yeah. But, you know, I got dehydrated when I traveled this weekend. Oh, really. And I'm not, like, dehydrated, like, Oh, what was me? My kidneys hurt and I'm in trouble. But, like, I just didn't drink as much because I was traveling, yeah, yeah. And I got home, I was four pounds lighter than when I left. And I did look in the mirror and thought, oh, there is, like, more out of my midsection here. Like, my midsection is flatter, like all that stuff. But I thought the minute I start drinking regularly again, like this, these pounds are coming back, for sure. And they absolutely did. So, yeah, but I don't that's not how I'm trying to lose weight, obviously. But it was just really interesting. Like, you get on a plane Friday morning, you get down there, like, you know, by the time I get everything together, I'm supposed to go to this dinner. I go to the dinner. I don't need very much the dinner, but that's fine, like, and then next day, very busy, yeah, all day I, you know, I had to get in a car at 3am Sunday morning to leave. I was on a plane by 5am on Sunday Yeah. Got home, didn't bother weighing myself, weighed myself, like, the next day. And I was like, oh my god, I'm I was 182 it's like, the lowest I've ever been. And I was like, this is gonna this will all be the first big glass of water I have. Like, I think this is over. So what happened? Yeah, I hope it works out for you. But if it doesn't like you seem hesitant to go to that other doctor. I wasn't able to figure out why while we were talking, but I would

Katie 1:05:26
No, I think I probably will. I think the only hesitation is that I just went to the previous one. He's in a whole different practice, as in, like, we have two, well, we have more than two main hospitals here in Jacksonville, like we have the Baptist network, and then we've got, like, the University of Florida network, and we've got Memorial and so he would be in a whole new network. So I just have to be switching. That would bother you networks a little bit, because when you switch your Endo, you kind of want to switch everybody, so not only your Endo, but your general practice doctor, and your everybody else you have. Can't

Scott Benner 1:06:15
you just see the Endo, just for the GLP, I could probably and then not seeing for anything else,

I suppose. Yeah,

it feels like you're making more out of this than there is,

Unknown Speaker 1:06:28
perhaps,

Scott Benner 1:06:31
because I've been looking for a real good reason why you're saying this, and I can't find one, so, yeah, just call him and be like, Hey, you helped my friend. My doctor is a jerk. Can you help me too? And he'll be like, Yeah, sure. And that should be the end of it,

Katie 1:06:45
don't you think, probably, yeah, just go do it all right, I'll give it a try. Because

Scott Benner 1:06:50
if you don't get the ball rolling, at least, if a month from now you're like, Oh, I've gained 10 pounds, and I'm using 15 more units of insulin every day or whatever, right? Then you're going to be like, Oh, I wish I would have started this. And if a month from now, you're like, you know what? I don't even need this. GLP, then God bless you, and then keep going. But at least you had your Dexcom, you know?

Katie 1:07:08
Yeah, that's why. I'll let you know. I will put it out there on the Facebook page. Thank

Scott Benner 1:07:13
you. I appreciate that. All right, go out there and make more friends that listen to the podcast. I like that.

Katie 1:07:18
I will. All right, I'll send me your way. Thank you. Hold

Scott Benner 1:07:21
on one second for me. Okay, you can use the same continuous glucose monitor that Arden uses. All you have to do is go to dexcom.com/juicebox, and get started today. That's right. The Dexcom g7 is sponsoring this episode of The Juicebox podcast. Huge thanks to cozy Earth for sponsoring this episode of The Juicebox podcast. Cozy earth.com use the offer code Juicebox at checkout to save 40% off of your entire order. A huge thanks to touched by type one for sponsoring this episode of The Juicebox podcast. Check them out on their website, touched by type one.org or on Facebook and Instagram.

I'm still proud of what I said in that cozy Earth ad about they have dryer balls and the towels that I it was awesome. I'm really, really, really proud of myself. 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. 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. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way, recording doing his magic to these files. So if you want him to do his magic to you, wrong way, recording.com, you got a podcast. You want somebody to edit it. You want rob you.