#1415 Blinded by the Light

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After decades of uncontrolled diabetes and multiple eye surgeries due to diabetic retinopathy, Ryan discovered the Juicebox Podcast, completely changed his management, and dropped his A1C from 10.7% to 5.5% in just a few months.

Medical Missteps – One bad piece of advice led to years of mismanagement and diabetic retinopathy, with doctors failing to step in.

Right Info, Right Time – A pump trainer introduced Ryan to the podcast, transforming his approach and blood sugar control.

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

Scott Benner 0:00
We're all together again, friends for another episode of The Juicebox Podcast.

Ryan has had type one diabetes since he was very young prior to finding the podcast, his management was not terrific, and it led to retinopathy in both eyes. Today, we're going to talk about that and much more. 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. I know this is going to sound crazy, but blue circle health is a non profit that's offering a totally free virtual type one diabetes clinical care, education and support program for adults 18 and up. You heard me right, free. No strings attached, just free. Currently, if you live in Florida, Maine, Vermont, Ohio, Delaware, Alabama or Missouri, you're eligible for blue circle health right now, but they are adding states quickly in 2025 so make sure to follow them at Blue circle health on social media and make yourself familiar with blue circle health.org. Blue circle health is free. It is without cost. There are no strings attached. I am not hiding anything from you. Blue circle health.org, you know why they had to buy an ad. No one believes it's free. This episode of The Juicebox Podcast is sponsored by the Dexcom g7 the same CGM that my daughter wears. Check it out now at dexcom.com/juice, box. The episode you're about to listen to was sponsored today by ag one you can drink. Ag one, just like I do by going to drink. Ag one.com/juicebox, check it out. Hi. My

Ryan 1:54
name is Ryan. I am type one diabetic. I live in Gilbert, Arizona, and I have been diabetic my entire life, pretty much. What does that mean? How old? So I was diagnosed at 16 months old. It was April 3, 1988 it was Easter morning. Oh, Happy Easter. Yeah. My mom came into the bedroom to pick me up to get ready for the day, and lifted me out of my crib, and my body was completely limp. She rushed me to the car, got my dad got to the car, rushed me to the hospital, ran through the front doors and just screamed, there's something wrong with my baby. They took me back immediately, and I don't know the timeline that it took, but shortly later, I was diagnosed with type one diabetes with a blood sugar of like 1000

Scott Benner 2:44
Oh my gosh. And

Speaker 1 2:45
I think we spent like a week in the hospital between getting me kind of regulated, and then all the training and stuff that my mom had to go through, and my dad was my parents owned a pizza restaurant at the time, so my dad was busy with the pizza restaurant. My mom went through all the training, and how much could you have weighed at that point? Right? Oh, man, I don't know. I was a decent sized kid.

Scott Benner 3:09
You guys ever talk about that like as adults? I

Speaker 1 3:12
mean, it's, it's funny, like I had never, I didn't talk a lot about it. I've heard stories throughout my whole life, but only up until, like last year, when I started listening to the podcast and actually, like taking care of myself, is when I started asking her and talking more questions. But, I mean, it was such a long time ago, I don't think my mom remembers quite everything like she doesn't. I asked her the other day if she knew my a 1c when I was, you know, when I was diagnosed, and she didn't remember, but she thought it came on so fast that it probably wasn't that high. Were you in your late 30s now, I'll be 38 next week, next Friday. Oh,

Scott Benner 3:45
happy birthday. Okay, so about 40 years with diabetes, give or take a couple there. I guess I want to understand your mom is the one that did the training, so she did most of the care, and that care. Do you even know what it was like when, I guess, my question is, is, when do you start recall being involved? I was probably

Speaker 1 4:06
five ish, six ish, when I started being involved in doing, like, really doing my own shots and doing my own blood test. I for sure I was, like, six or seven the first time I went to diabetes camp and I and I know I was doing all my own shots and stuff there. I mean, back then it was, you know, I was on regular and mph. And, I mean, even that's another story. The week I got diagnosed, my mom went to pick up, pick up the the insulin from the pharmacist and and she grabbed it and, like, for some reason, my mom just looked at it and was like, and so this is the diluted insulin. And the pharmacist grabbed it out of my mom's hands like it was death, because it was not diluted insulin, my first shot would have killed me. Somehow the script got written wrong, or something happened, and so they almost gave me, like, regular, like, adult insulin, full strength,

Scott Benner 4:48
and you were so small that the pharmacy was diluting the insulin for your mom. Yeah, yeah, wow, before

Speaker 1 4:54
I was able to do anything. I mean, I mean, you know, with art in but, like, obviously, you know, times are different. Every kid is different. My parents used to have to wrap me in a towel to do my blood test and my shots, just because they knew I needed it, and I and I didn't want to do it. And, I mean, it hurt, you know, some kids don't like it. Now it's, I go to get blood drawn and needles. Don't bother me. I'm good, you know,

Scott Benner 5:16
wait, they had to swaddle you, like, like, like they were trying to help a raccoon like that kind of a situation, pretty

Speaker 1 5:22
much, pretty much, at least, those are all the stories I hear. Is I used to be wrapped in towels just to be able to get, get to see what my blood sugar

Scott Benner 5:30
was, so you couldn't flail or defend yourself, that kind of thing, exactly.

Speaker 1 5:34
And I mean, you know, blood testers took a lot longer back then and required a lot more blood. So I'm sure it was even less fun.

Scott Benner 5:40
Okay, so how long? How long did the swaddling go on for? Do you think I'm

Speaker 1 5:45
trying to remember like, I have very I have very little memories of my like, early childhood, like some of my memories do include like, I vividly remember waking up from, like us from a diabetic seizure, like a low blood sugar seizure when I was probably, like, four or five. But other than that, I mean, I probably, probably around that time, four or five years old, I think I was, I don't think they probably swaddled me that long. But again, I don't remember, like, an exact time

Scott Benner 6:11
and so, but by five or six, you were giving yourself your own shots, but you're still doing regular and mph at that point too. What are you doing? Like, two

Speaker 1 6:18
a day? Yeah, I was doing one, one in the morning, one at night, you know, right before breakfast, and then eat, and then two hours later, snack, and then two hours later, lunch, two hours later, snack, two hours later, dinner. It was just very, very regimented. And I think that, like back then it, for me, it really kept, I mean, it kept things more regular, keeping that schedule and not not doing like MDI. What we know of MDI today and my blood sugars were actually pretty good back then. I know when, when, like, for the first couple years of my diagnosis, the the doctor who was the endocrinologist wanted me to be within, like, 100 and 125 and my mom said that she was able to keep me there pretty well. But for the first two years, she was on the phone with that doctor twice a day to get to get my doses, like that doctor alone, I think, say, you know, probably saved my life, just because of, just because of the time he was willing to put in there and never charged my parents a dime. I didn't have insurance my entire life, until I was probably in my mid 20s, and I got a job that that offered insurance, because when I was diagnosed, my parents were in the middle of switching insurance companies, the insurance company they were leaving took on the hospital bill for my hospital stay, and then the new one wouldn't take me on for a pre existing disease. So like throughout my whole life, it was I know for my parents, it was a struggle to be able to pay for things, for my for my care, and then I've had some really great doctors that have really helped out along the way, but a lot of those

Scott Benner 7:46
doctors sadly died from poor nutrition, from eating so much free pizza, though. Is that true? Probably, yeah. Okay, so when you say I started taking care of myself, like, went, like, last year. Is that what you're saying?

Speaker 1 7:59
Yeah. So like, when I said that earlier, I got on a pump in, like 1999 I was, I don't know I was like eighth grade, and I had went to diabetes camp again. It was, like my third time going to diabetes camp, somebody had a pump, and I started asking questions, and I went back, and at that point, like we were finding a new endocrinologist, talked to this doctor about a pump and was able to get on a pump, the pump, I think, really, like, made me feel like I had more freedoms, and I and I took those and then as I got older and I moved out of the house, and between drinking and partying and all the things, I let, I really let my blood sugars get out of control. I let, I let my diabetes, like, go to the wayside. I never didn't do insulin like I was always doing my insulin, but I definitely wasn't doing the right amounts. I wasn't adjusting basal or anything. At a doctor's appointment at the end of 2023 My doctor was like, I really think that you need to get on a on a better pump and and maybe go with like the Dexcom and the tandem, the T slim x2 and because before that, I mean, I've been on so many different mini med pumps, Medtronic pumps and things like that. And I did, I did do the Medtronic pump with with their CGM, and I hated it. I absolutely hated it just because of waking me up in the middle of the night to ask for a blood sugar to stay in auto mode and things like that. And so I basically, I just took it off and I ran it just in manual with me doing my blood sugar maybe once a day, sometimes twice a day.

Scott Benner 9:26
Ryan, go back for a second, though, before you tell me you were asked to go back to where you said, like, the first pump gave you freedom. So am I understanding correctly that you were so regimented on the regular and mph that you were following the regimen? But then when you went to a pump and you're like, oh, I can just like, eat when I want, and push the buttons, but then instead of doing that, you sort of just were like, Ah, I guess now I don't have to be regimented anymore. Like, did you you know what I mean? Like, did it free you, but in the wrong direction. I hope your New Year's resolutions are holding tight. Mine from a few. Years ago, at least one of them is still going very strong. That resolution was to take better care of myself, and I've been drinking ag one every morning since then, it's actually been easy to stay consistent, because ag one mixes easily, tastes great and goes down smooth. I count on ag one every day to support my immune health, it provides me a nutritional supplement that is the foundation of my everyday AG, one is sponsoring this episode. And ag one is offering new subscribers a free $76 gift. When you sign up, you'll get a welcome kit, a bottle of d3, k2, and five free travel packs in your first box. So make sure to check out drink. Ag one.com/juicebox to get this offer that's drink 81 com slash juice box to start your new year on a healthier note. I

Speaker 1 10:47
think 100% I think that. I think it was just like I didn't I didn't have to eat a snack every two hours if I didn't want to. I didn't have to eat lunch at the exact same time or breakfast at the same time. And so it kind of stopped me from having to follow some sort of, like script for the day, and I just would do what I wanted when I wanted. And then, like, I mean, through my life, it, like it took all different kinds of turns. And there, I mean, my very first pump training, the CDE that did the pump training with me, you had to go in for a meeting. And there was, it was like a big group of people all doing the pump trainings at the same time. Fill up your pump with saline for the first three days, and then you come back, and then you do with real insulin. And they wanted you to come at lunchtime and bring your lunch so that we can all do insulin for the first time together. And so we went to Taco Bell. My dad and I went to Taco Bell on the way, picked up Taco Bell, got there, and I did my insulin like I Pre Bolus before I knew what that was. And I got yelled at by the CDE for doing insulin before I ate, because, well, how do you know you're gonna finish it all? My dad looked at him like he's not gonna not finish his food, like I never had a problem not finishing my food. But, I mean, it was like 17 units of insulin, so maybe she was afraid of that. But I think that also set, it set different price, like, a standard in my head of like, okay, do your insulin after your food? And so I got stuck on that for such a long time, going through, like, different endocrinologists. When I got to the endocrinologist, which the is the same office I'm in now, I think at that point, they probably thought like, Oh, he's been diabetic for such a long time he knows what he's doing, and so they just let it go for a while. I I've been at that office since probably 2013 2012 ish, my a one CS have not been below a 10% more than three times in that in those 10 or 12 years. Oh,

Scott Benner 12:37
geez, you figured it out. And then we're told by a CDE, don't do that. You went back in the other direction, and not under a 10,

Speaker 1 12:52
yeah? I mean, I like, I once I started listening to the podcast, I like, well, I'll get to that in a

Scott Benner 12:58
minute, yeah. But there's, like, a couple of

Speaker 1 12:59
decades in there first. So I had them print me out all my ANCs from when I was at the office, from when I was at their, you know, at their practice. And there's twelves, there's elevens, there's, you know, like so many 10s, and then, like, randomly, there's one, like, 9.8 and then there's, like, one 8.8 and that was when I was, I was at the gym, six, seven days a week, eating nothing but chicken, brown rice and broccoli for every meal of the day. I guess I just figured that, you know, the carbs out for it, and was able to do it, but it got my a 1c down to an eight. And I was like, Oh, this is awesome. And then I'm like, and now, like, flash forward, I was like, Okay, that wasn't so awesome, but at least I was able to get it somewhere. But I never had this intervention of the doctor telling me, like, you need to do better, you need to do this. Like they would just say, Okay, well, let's try to do something, and we'll see in three months. And it was just, it wasn't ever a here's why, here's what you need to do, here's how you need to do it. Kind of conversation. They

Scott Benner 13:53
just say random things that don't really do any that don't have value.

Speaker 1 13:57
Yeah. And then so in 2014 is when I first felt the the repercussions of this. In 2014 November, 2014 my best friend was getting married in Mexico, and we were getting ready to go down to to Rocky Point for the wedding. And I woke up one morning and in my left eye, it was like somebody poured oil in my eye and I was and I couldn't see. I could barely see through it. Didn't know what's going on. Went to the eye doctor. He was like, Yeah, you got diabetic retinopathy, and you need to go see a specialist. So he sent me to go see the specialist. I think that was like a Thursday, like the next day we were leaving. So he was like, yeah, go to Mexico. Have fun. We got you, you know, scheduled for surgery for when you get back, don't change anything. Go down there, enjoy yourself and come on back. And so a week in Mexico, half blind and came back. Had had my first, my first eye surgery in my left eye. Like six months later it happened in my right eye, and then about six months later it happened in my left eye again. And so I've had so 2000 14,016, I had two. Two eye surgeries in my left eye, one of my right eye, yeah, and then my left eye. From that point forward, the vision has gone in and out periodically throughout the next, like, eight years. But

Scott Benner 15:10
no one ever said to you, hey, maybe if your a 1c wasn't 11 or 12 or 10 or nine or whatever, like, this wouldn't be happening.

Speaker 1 15:19
It's really funny, because even every time I've gone to the eye doctor like, oh, it's not your fault. It's not your fault. Well, I mean, it is like I didn't, I wasn't taking care of myself. I let, I let my blood sugars get out of control to the point that this is what happened. But no, nobody, you know, I mean, nobody directly said that.

Scott Benner 15:35
It seems ridiculous to me that you'd have those problems and someone wouldn't stop and go, Okay, look, obviously, this isn't going well. Let's examine everything. We'll start over. Break it down to the to the ground, build it back up again. Get you going in the right direction. Like no one, like an endocrinologist doesn't say that. An eye doctor doesn't suggest it. Definitely

Speaker 1 15:58
not an eye doctor. I do think the endocrinologist has tried it. So, I mean, like, Yes, I don't think the endocrinologist have done their job in my life to better educate me on things. And I know for a fact that I also wasn't as honest with endocrinologist growing up as I should be. Yes. I mean, like, back before CGM like, you had the log book, and I filled out that log book in the parking lot of the of the endocrinologist office with just, I think I wanted my blood sugar to be this day, so I def I wasn't doing my part. And I own that 100% okay, but at the same token, you can't look at a log book and see, man, your blood sugars are really good, but you're a one season 11. Well, it just doesn't

Scott Benner 16:33
why your eyes are popping out like the wolf in the old cartoon was that Bugs Bunny cartoon, and, yeah, but, oh, wow. Look at this here. If I look at your logs, you're a one CS, 5.9 You're doing awesome. I mean, you're obviously, you're lying about your about your blood sugars, as you're doing that, Ryan, like, put me in your mindset, like I'm my eyes are popping, like I'm half blind. Sometimes it's not like they fixed it and it went it came back again. What are you telling yourself to be able to lie in that book, and what are you telling yourself about what your future is? At

Speaker 1 17:05
the time that the eye problem started, I wasn't even doing a log book anymore, because I was, I just, I just wasn't. And it was like, bring your bring your meter in. Well, download your meter. Oh, I forgot it today. So, like, I was just, I was trying to get away from, like, bad numbers and whatever they whatever I thought they were going to say. And every time I was, like, I'm healthy, like I feel good, I didn't feel bad, you know. And so I wasn't thinking anything was wrong. I just, I just really wasn't. If you've ever looked, I'm sure you have, but if you've ever looked at the bottom of the paper, PDF, or whatever, for the for the A, 1c, and it says the levels, and it says, like, at this level, you need, like, some sort of intervention. Like, I was never given that, and I and I know that I needed it. I've always, and I've always been the kind of person that, like, once I get this information, like, I'll run with it, I'll do really well with it. I've always been the kind of person that will once I'm in a new a new situation, whether it's a job or, like, when I was going to the gym all the time, like I I would do the research to figure out how to be the best in that, that I could, I mean, it's, it's helped me my whole life, except for in diabetes, until, until last year, when I found the podcast. But up until that, I just, I was just living my life and just enjoying everything I was doing and thinking, You know what? Like, you know, at least I have my toes. Because growing up like I was always told that, oh yeah, you just got to be careful your feet. Like, your feet are going to be the first things that have problems with them. So, like, every time I'd get a cut on my foot or something, like, I'd be like, Oh, I just got to wash that. Really good. I didn't think of anything else, you know. Yeah.

Scott Benner 18:30
So they set the bar pretty low for you, holding onto your feet. Anything better than that to win, right? Because I didn't have the worst thing happen to me that somebody told me was going to happen. Yeah, and when things go wrong, you're aware that they're wrong, but at the same time, this is the path you were put on, and you're doing the thing that the path said, but you're not though, like you were put on a bad path, meaning you didn't have a ton of information right, a lot of actionable tools, things like that. But still, when you saw the numbers, I'm trying to get to that point. So when you see the number, like you said, it's a bad number, it's not what you're looking for. But you don't know how to get to a good number, so you just ignore the whole thing. Is that right? Pretty much,

Speaker 1 19:13
like, I mean, obviously, like, I knew, like, okay, insulin, insulin brings your blood sugar down and and I knew that, but I was, I was in such a bad spot of of not knowing how to make the insulin work for my body right. Like, and, and especially like, without not checking my blood sugar time. Like, I've always had jobs where I was active and I definitely wasn't checking my blood sugar. Like at lunchtime at work, like I would go to work, I would wake up and maybe check my blood sugar in the morning and then go to work and just work, and lunchtime comes, great. I'm eating Chinese food today, and I just ate it. Just wouldn't do my blood sugar. And then, oh, crap, I forgot to do my insulin. So I did my insulin. Just kind of lived that path. And, like, there were so many times that I can remember, like, like, an hour later I'd be like, Oh, I still never did my insulin. Maybe I should check my blood. Sugar, and, okay, I'm just going to do 12 units of insulin. And I would just do insulin because I thought that's what I needed, and I thought that was the right amount. Or I know that this is what I would have done. My blood sugar is probably really high right now, so I just, and I would just give myself insulin. And I never had, like, at like, doing that. I never really had any, like, like, really low blood sugars. But, I mean, even, like, since I've been on the pump, I think I've, I've still had, I think, three or four, maybe five, like, diabetic seizures,

Scott Benner 20:28
because you're just, like, randomly picking numbers and putting in insulin, yeah, I mean,

Speaker 1 20:32
the very, the very first one I had on the pump was just because I was learning and I was new. I mean, it was, like, it was maybe the first couple months after the pump, my blood sugar was low, and I grabbed a peach, and I ate the peach, but I did insulin for the peach, because, hey, do insulin for your food. And I just wasn't thinking straight. And then I woke up, and my dad was like, I don't know, I don't know how my dad it must have been right around the time he was coming home from work anyways, but I was in the on the living room floor, and he I'm waking up to my dad making sure I'm okay

Scott Benner 20:57
during this entire, like, stretch of your life. And to me, the eyes are just very like, I don't know how you ignore like it looking like you're looking through oil, right? Like, do you ever, like, multiply that out and say, Okay, well, right now it's my eyes, but eventually it's going to be my life. Or do you never have that feeling of like, this is going to kill me when

Speaker 1 21:18
the first eye problem started in 2014 I was my now wife, and I were going down to Mexico, and so, like, and then now we and then we got married. We got married. Like, a year after that, she had a five year old little girl, and like, when we started dating her, her daughter was five. And so now I, now I'm like, I have this little family. And I was like, Okay, I gotta do better. And I and I really wanted to do better, and so I did. I started, like the doctors do your bait, your Bolus, you know, 15 minutes before you eat. And so I really actively started trying to do that more and and most of this, and this was after the eye problems, but so I started thinking, Okay, I got to do this. And then, just like, you're so used to these habits that you've fallen into that, it was really hard to just continue it, yeah, for a consistent amount of time to make a difference. And then 2019 I had my my baby was born, and, and at that point I was like, Okay, I like, I like, I really gotta do better. Like, now it's, now it's, I got more than one kid. I got my wife. Like, they need me, and my wife isn't working like she's we made the decision she was going to be stay at home mom, like my family needs me, and I so I really, I did. I like, I started wanting to try to do better. I do feel like I was doing better, but still not to the point where I should be like, I definitely was. I still wasn't checking my blood sugar all the time. My wife would always tell, hey, what you like, go check your blood sugar before dinner. The kids would have fun with it. Well, not my at the time, my baby wasn't old enough, but our older, our older daughter, well, what was your blood sugar? Dad and I, you know, 170 or whatever it was, and so it's still really high. But to me, 170 was always really good because it's a lot lower than it was in the past.

Scott Benner 22:59
Yeah, it's the three hundreds, probably before, yeah, and my family definitely,

Speaker 1 23:03
definitely started making me feel like I needed to do something different. So last year 2023 I don't remember the month of my appointment, but it's when we started talking about Dexcom again, because I had a Dexcom back in like, 2014 or something like that, because the doctors were like, we just want to see what, what's going on. And I hated it, and so I never thought I'd go back. And then she said, Hey, things have come a lot better. Let's try the Dexcom. So I figured it out, and I like, I have terrible insurance, so it's still, like, the pump and the Dexcom and everything started out cost me, like, five grand out of pocket. And I was like, Okay, let's, let's just see what happens. And it all, it all gets mailed to me. Then it's, let's set up your pump training. So I, I I call and I and I start getting the pump training set up. And this lady I'm speaking to, she's like, No days are working for her that our schedules would line up. And so she said, Okay, I'll have a member of my team call you. And so I get a I get a call from from a different CDE, let's meet up. Let's do this, like, anytime that you're available. So it was a Tuesday after work, and we met at the coffee shop down the street from my house. And his in laws used to own that coffee shop before it was, like it was when it was a previous owner. So he's, like, knows the area well. And I went into this pump training thinking, Okay, this is like, my sixth or seventh pump, and I'm going to go in there, I'm going to learn how to put the insulin in and and then that's going to be it. And I'll tell you that I'm so happy that that was not what happened. Because I sat down and he introduced himself, and I know that he won't care. His name is Jordan, and he is a group member in the in the Facebook group. I mean, within the first probably 10 minutes, he was like, Hey, have you ever heard of the Juicebox Podcast? And I was like, I go, No. And like, all of a sudden, just something about that meeting with Jordan, like it opened my eyes and, like, there was just something that clicked. And I was just like, hey, like, I need to do better. He was a diabetic, so that that was a plus for me, like he knew what he was talking about. It wasn't just like somebody that knew how the technology worked. We had a really good meeting. We learned, I think you learned how to use the pump, and before. Before I even left the table, I was searching the Juicebox Podcast. I was got signed up for the Facebook group and and then the next day, I think, I listened to probably my first, like, five episodes of the podcast. That was December 27 that I met with him. And then my next endo appointment was in the like, the second week of January. And I was like, okay, like, I know my, I know my ANC is not going to be good. And at this point now, I know what, like, what to look for on the Dexcom app, or, like, on the clarity app, of like the GMI to see about what it's at. And it looked really great because, like, within the first day of listening to the podcast and and just starting to do what it says to do, and then the Dexcom, and the way the Dexcom works with the tandem, my average blood sugar was like 111 for the two weeks that I had been on the pump when I went to the next endocrinology appointment. That's awesome. My ANC was still a 10.7 Yeah. But the doctor sits down and she goes, your blood sugar looks incredible. She goes, but let's work on these. Let's work on these low blood sugars. I think the lowest blood sugar I've had is like 64 and I'm okay with that. Like, I was so good with that. And I looked at her in the face and I said, I've lived for so long with high blood sugars. I said, I'm not going back to that, and I'm very comfortable with a 64 blood sugar. Like I had my pump set, like 65 as being low, and I've changed that since then. But like, I was just, it was a, it became a comfortable number. How does she respond when you push back? She was like, Well, okay, like, she didn't really say much. She just kind of let it go and right? I laugh.

Scott Benner 26:27
I just laugh all the time. When people are like, they make these pronouncements about anything. Forget what the number would it's like, this is very important. You can't do this. And then you go, I'm going to they go, all right, yeah, oh yeah. I mean, was it that way to stick to your guns anyway, 100%

Speaker 1 26:46
everything that I was hearing you say, I just took it, and I was like, okay, like, I have to do that. I have to do that. And I don't even remember, like, the context of the episode, but there was, like, one episode you said something, like, I was listening to the podcast while working. And so, like, I'm, like, I own a cabinet business. And so, like, as long as I'm not sitting in the front with with customers, I'm moving cabinets or I'm doing something so I can listen on my headphones, I can I can work. I can do things. And you said something about, like, doing extended Bolus with 30% up front, 70% over a half an hour. And I just, and I just started doing it. And like, I was like, Man, this is really working. I did it for every meal, and, like, it just seemed to be working really well. And then, like, I've tailored that plan now, and I do want to talk about that later, but, yeah, one of the episodes when you talked about, like, you said, like, well, ninja level stuff is one year when you do insulin, when, when your blood sugar is low, you correct with carbohydrates, and you do insulin at the same time. And I think that it might have been within the first, like, two or three weeks of the pump that I I put that to the test. I was delivering cabinets, my blood sugar started getting low. I didn't have anything with me, so I was, like, all right, like, before it gets really low, I'm gonna go to the gas station just up the street. So I went to the gas station and I got, just got an orange juice, and then across the street is a McDonald's. And I was hungry, so I went and I got a couple of I got a couple of McDonald's, and my blood sugar at this point was like, 55 diagonal down. I drank the whole thing of juice, and I ate two sausage muffins, and I was like, Oh, my blood sugar is going to go screaming high right now. Like it's, it's not going to take long. And I think at 55 diagonal down, I did like, eight units of insulin. My blood sugar leveled out at like 90. It was perfect. And I was like, All right, like, this guy knows what he's talking about. And I was like, This is awesome. It's all timing

Scott Benner 28:28
and amount, the whole Yeah, yeah, Brian, over and over again. I should just make a new episode every day that just goes you just need to put in the right amount of insulin at the right time, and then just figure out what that is. You can't get to it without the conversations and the weird explanations and, like, it's funny, like, you're talking about, like, putting in 30% now in the rest over a half an hour was how I got around. Pre Bolus thing for Arden's school meals, because she would go to the well, we would, we would Bolus from her classroom, like, remotely, like I she'd text and go, Hey, like, you know lunch is in 20 minutes. And then I'd look into your blood sugar, and it's like, 88 and then you're like, oh, okay, well, I want the insulin to get in because I don't want the lunch to make her high, but I can't put all of it in now, because by the time she gets down there, she starts eating, she's gonna get low. How do I manipulate the tools that the pump has for me to put that insulin, to layer that insulin in such a way that the action of the insulin is meeting the, you know, the the impact of the carbs. And I just bastardized the the extended Bolus feature on the Omnipod to do that. Oh, yeah. The reason, when you share it like, look what happens, like somebody like you, who, for 40 years has not been doing well. You know, give or take, who hears and goes, Oh, I wonder how I could tailor that for me. That idea, and it's, it's just awesome. And I make, you're making me feel like, really good. I appreciate knowing that this is helping you. Well, I'll

Speaker 1 29:54
tell you my next endocrinology appointment from that, from that day was, it was in May. It was like the second. Can't wink of May, my ANC was a 5.5 Wow. I just, like, I went in there, like, and I was like, I go, I know my, I know my a 1c is good. Like, I'm going in here, and I'm super excited. Average blood sugar of, like, 108 on the Dexcom. Like, clarity gap. And I'm, I've, like, I've got this. And I sit down, and she's the endocrinologist is, like, your a 1c is a 5.5 that's pretty good. Let's go ahead and let's, let's try to work on these lows. And I was like, really, like, that's what you're gonna say to me, like, you've seen me for such a long time, and you're just gonna say, oh, yeah, okay, you're doing pretty good with this. But let's, let's work on the lows. And I And again, I was like, listen. And I told her, I said, Listen. I said, You guys are comfortable with me being between 70 and 180 a 180 blood sugar is still not a good blood sugar. I said I am not going to do that. I'm not going to let that happen again, and I'm not going to continue to not have like, five A, one, CS and and I'm okay being low. And I need you to understand that. And I just really want to understand why you're telling me that this 4% below 70 is a bigger deal to you than the 25% that's okay to be above 180 when you're looking at the chart of what your blood sugar is supposed to be. Ryan,

Scott Benner 31:11
was this the same person told you not, the Pre Bolus, the Taco Bell? No, no, okay. Way, different people, okay, the same outcome, by the way, because, isn't it interesting? The reason I asked because that person was back when you were a kid who told you, I don't Pre Bolus that food. You just, you know, after you eat, you take it and then you live this way for as long as you live, and then you figure it out. And then another medical professional, I guess I'm making air quotes, comes in is like, Oh, I wonder. I could this guy back up again. Awesome. You're all doing a great job out there. Keep going. It's

Speaker 1 31:41
crazy. I mean, like, she now she just writes my scripts and, like, that's all she is. Like, like, once I started listening to the podcast. So like, I'm on the T slim, and then I start listening to the podcast, and I'm like, hold on a second. There's a tubeless insulin pump out there. So naturally, I got onto, you know, like, I clicked on the link on the webs, on the Juicebox podcast.com, or the Omnipod. I got information about it and so, and then I got a free trial ship to me. Obviously had to have the endocrinologist writing a script for it. And she's like, she called me. She was like, I just got a request for this. And I was like, I'd like you to just sign that and send it in. And she was like, Okay, I just wanted to learn about it like I and to be honest, I only wanted to get the Omnipod so that when we go swimming, or if we go to, like, the Great Wolf Lodge, like the kids love to go there, that I can wear this, I can wear the insulin pump just all the time, and feel good about it being safe. Like I went to the Great Wolf Lodge with my tea slim, and I wore it everywhere I went, like walking through the the lazy river with my daughter, or wherever I wore it because, like, it's not waterproof, but it's water resistant, and I was never underwater for more than 30 minutes, or definitely not three feet deep. So like, I was like, it's fine, but if I can have the omnipot on, then I can feel better about, like, going down the water slides and doing things like that, and just enjoying the time with my kids getting deeper into, like, the wave pool, like, just having fun. And so I wanted it for that, and I and I I'm glad I did. And then flash forward now and to September of this year, I go back for my endocrinology appointment. My a one sees a 5.6 so, like, I've kept it in the fives for, you know, the majority of this year up to this point. And then the next day, I went to bed, my CGM woke me up at like, 1030 at night, and I went to look at my phone to see what it was, and I couldn't see out of both of my eyes, my left eye, like I said before, my left eye has been the vision has been in and out periodically throughout the last eight years since my last surgery. Yeah, this was the first time that I hadn't been able to see out of both eyes. And the day before this, I put on the omnipot again so that I can refresh myself with how to make it work. But now I can't see. I woke my wife up and I said, Hey, I can't see out of both of my eyes. I think I know what it is. I said, I think that diabetic retinopathy is just coming back to bite me in the ass again, but I can't see. Like, what do we do? She like, she's like, dead asleep, and she's like, kind of waking up, and she's like, I don't know. Like, what do you want to do? And I was like, I think I need to go to the emergency room. In my mind, I didn't think it was going to do anything, but I was like, I think we need to do this, just to make sure it's not something else. I have to give her the PDM for the Omnipod, which I'm barely familiar with myself. So, like, how am I supposed to tell her what to do out even knowing it and not being able to see so she takes it. We get to the emergency room. My daughter's asleep, so my my mother in law, came and sat at the house with us, or sat at the house, just in case, and we go to the emergency room, and they're like, yeah, like, it looks like you got diabetic retinopathy again. Go see a doctor tomorrow. So by the by the time I woke up the next morning, my wife had already had a doctor's appointment made for me, and we were going into the retina. The retinal specialist, they couldn't see into my eyes with, like, the normal test that they do to, like, look and see what's going on in your eyes. So they had to do an out, an ultrasound in my eye. And the way my wife described what was on the screen was like the old TVs where you're trying to find the channel, and it's just static. It. Just looked like white and black, just fuzzes throughout the whole thing because of how much blood was in my eye and both eyes. And so then we started talking about a surgery plan and how to make this work. And the doctor was like, All right, like, I could do surgery tomorrow, but, like, we're only going to do one eye, and I really think you should wait, because I want to do it's an Avastin shot that you get in your eyes, and it's supposed to help with draining blood. It's supposed to help make supposed to help make the blood vessels stronger and all this stuff. And I was like, I just need to see man. Like, you know? I was like, I go, You don't understand. Like, I'm the only one in my family that works. Like I am what keeps my family alive, yeah, like, financially, like, my wife takes care of the kids. She, like, she she's got a harder job than me, but I gotta get back to work. He was like, I know you have to get back to work, but I want you to get back to work and and have it last for a longer time. So by the end of this, like, three hour meeting that we had there, I left with with a shot in both of my eyes and a plan for surgery for the following Monday while we're sitting in this doctor's office. So now, so this is Thursday, we're sending the doctor's office like my blood sugar's going up, and I look at my wife, I go, what's like, what's my blood sugar? And she was like, it's 130 I've already done two units of insulin. You're okay. Like, she's just, like, took control. It was, she's, she's incredible. But like, she, because she's watched me from, you know, at this point, she had watched me for the previous nine months. Like, just really take control of my diabetes and like, I come home and talk to her about what I hear on the podcast and what I'm doing and everything. And so she, like, while she doesn't have the hands on she, I think she knows enough. But so then the whole weekend, I can't see and by the like, when I would wake up in the morning, like, I have really bad foot on the floor, and so I wake up and she had already done, like, a unit of insulin. My blood sugar is, like, 104 and she's, like, I did a unit of insulin so you can have coffee soon, because I know your blood sugar is going to go up. So, like, she's controlling this. Like, I was like, Man, I'm glad that. Like, I knew enough about it, so at least tell her how to push the buttons. But now I don't got to

Scott Benner 36:53
do anything. Well, also you by coming home every day and sharing what you learned, whether she was learning too,

Speaker 1 36:58
oh, 100% you know, I mean, and like, there were, there were times where she was like, All right, I don't want to hear about the podcast. I want to hear what your blood sugar is doing. But I was like, but they're all the same. It like, I need to tell you one, to tell you the other. I can't just tell you part of it, because I need you. I need you to understand why I'm telling you this. Finally,

Scott Benner 37:15
some ladies complaining about hearing from me. Usually it's men who are like, I please stop telling me about this guy's podcast. I like the equal opportunity I have to tell you I'm I've never been proud of a person I've ever met in person before. Like, it's really, it's awesome to see how you just, just made the decision one day. And, I mean, how amazing is it that you, you know, just met a pump trainer who happened to, like, get through to you. You know what? I mean,

Speaker 1 37:40
oh yeah, I'm a Christian. I go to church every Sunday. Like, to me, like, this is a total God thing. Like, it was just, it was just incredible. No, yeah. I mean, Jordan is, he's amazing. I like, he's, he's such a good guy and and now Him and I are great friends. Like, it was, like, it turned out to be a really good friendship, more than just, like, somebody that taught me how to use the pump. Oh, that's awesome. But, yeah, like, so I had, I

Scott Benner 38:01
was gonna say, I've spoken to Jordan. He is a good guy. Yeah, yeah, he's great. So now here you are. You've got these two shots in your eyes. You're getting ready, prepping for the for the surgery. They start with one eye. How long? What's the procedure like? What's the recovery like? How long does it take?

Speaker 1 38:17
All right, so the procedure is, like, it's like a 3040, minute surgery. They put you under just so they can numb your eye. And then you're, you're more in like, of a, like a dazed state during the surgery, and there's a patch on your eye for the whole next day. You have the next day appointment. They take the patch off your eye, and you only need to wear it at night. You have, like, a regiment of drops you have to do for a month. From what I remember, like, again, like back in 2014 when I had these problems, I always had one. Always had one good eye. I had the surgery in my right eye first, and while it's healing, I feel like, okay, things are getting better, and I'm able to see and, like, within the first, like, couple days, I was like, Okay, I'm really starting to be able to see better. And then I was like, it's not getting better fast enough. And I and I was like, I know that my left eye still needs to be done. The doctors wanted to wait until at least, like the, I think, the two week appointment, a follow up appointment for my right eye surgery, to schedule the surgery for the left eye. I quickly learned that, like, my right eye wasn't actually getting better. My left eye was just like the shots were actually working in my left eye, and the blood had more had drained out of it pretty well, and I'm seeing better out of my left eye than my right eye. And it turns out it's because I had a cataract in my right eye that I'm that I have to get fixed and But first I gotta still get the surgery in my left eye so that it doesn't come

Scott Benner 39:32
back. I mean, that's a lot. Yeah.

Speaker 1 39:35
Okay, so we go back for the two week appointment schedule surgery for the following like we're sitting there ready for that two week appointment, like we had something planned for that weekend. That was like, All right, we have to do these things for this weekend. And the doc, the doctor, was like, I could do surgery this afternoon, if you can leave right now and go to the surgery center in Scottsdale. And I was like, two weeks ago, and said, Yeah, let's go and at this. Point. I was like, I want to wait until through the weekend like there was, and I can't even remember what it was now that we were doing. But I was like, whatever we're whatever we're about to do this weekend, is more important. I need to be able to see, make sure things are okay, and and then we'll just do it on Monday. And so the following Monday, going for my left eye surgery, for both of the surgery, so for the first surgery, I was on the Omnipod, and I made sure to talk to the doctors and then or talk to the nurses at the at the surgery center, about, like, I'm, I'm gonna keep the pump on. I'm gonna, like, I would like my wife to be as close to me as possible so she can help manage my blood sugars. And they were like, Okay, well, it's not a possibility, but what we'll do is, is we have a type one nurse that we'll we'll make sure she's with you. At that point I couldn't see anybody. So it could have any one of those nurses could have been the type one nurse. I didn't know who it was, but at least there was somebody there who I thought knew what was going on. I'm on the Omnipod. I went into surgery with my blood sugar at like 106 and I think, I think I maybe went to like 111 through the whole surgery get done. And then over the next couple weeks, like I said, my left eye was getting better, so I switched back to the tandem because I was almost out of pods. Anyways, just because I had just been working through my free, the free trial that they sent me, got got back on the tandem. Now I'm going in for my second surgery. It was the same, the same nurse that had type one, and now her and I are talking, because now I can see so I can, like, actually communicate with her, like I'm sitting here talking to her about the Juicebox Podcast. And she was like, Oh, you're, like, the third person that told me that. I said, well, then you better start listening and get on there. Like, and I was talking about her, talking to her, about her a 1c the anesthesiologist are giving her a hard time. Because, like, I was like, Yeah, I'm at a 5.6 and she was like, Oh, well, I'm at like, a 6.2 and like, they had this really cool relationship where, like, he was given a hard time at 100% joking with her, but it really was cool, because on the on the T slim, I had talked to people in the past about, like, they went, they went in for some surgery, and so they would set it on, like, exercise mode, so that it would target a slightly, like it would be not as aggressive, and when it's going to give you boluses and stuff, because it's thinking you're at your exercising Well, I was like, I'm not like, I don't want my blood sugar to be high like that. So I put it in sleep mode, let the algorithm really take control of itself. And like, up to this point, like, my I feel like my basal were pretty well dialed in. My blood sugar started dropping, and I'm watching the Dexcom, and I like, I hit like, 74 or something. And I like, I was like, I know this is going to drop. And I asked the lady, I said, I need something to bring my blood sugar up. And so, like, they were like, okay, and they got the dextrose. And I was like, and I looked at I was like, Is there any way to know how much is in that? Like, how much carbs are in that? Like, what am I gonna get right now? She was like, Well, the doctor wanted me to give you the whole tube of it. And I told him, maybe half. And he agreed with me, like he listens to me. I said, I don't even want half of it. I just need a little bump, like, I need a little bit just to just to level this out, like, I'm gonna be fine. And so she did it, and within like, the first, like two or, like, the next Dexcom reading was, like, it went from like a 74 to like 120 and I was like, I'm sitting here. Like, Oh, this sucks. So I was like, I'm not gonna let anybody know this. But like, I Bolus another unit while I'm sitting there, because I was like, I don't want my blood sugar to be high. And so I went through that whole surgery, and I think that, like that 124 dropped right back down, and 125 whatever it was, dropped back down. And I rode like 80 through the whole surgery. And I don't think I would have, I definitely would have done that if it wasn't for the podcast. And I mean, I would have been riding through that surgery at like 300 if this was

Scott Benner 43:21
better high than low. Like, you know, at least I'm not gonna, yeah, no, I understand.

Speaker 1 43:26
My last surgery was on on the 21st of October. My left eye is great. Like, I can see really great out of my left eye. I know I need a new prescription for glasses in that eye, but we're waiting for that because next Monday, the 25th I'll be having the cataract surgery to clear that up, and then I should be good.

Scott Benner 43:45
Wow, man, good for you, by the way. What do they think brought on this, like, kind of like, second round of all this? Is it, the fact that maybe you brought your a 1c down so fast,

Speaker 1 43:55
I probably think that's what it is. None of the doctors have said anything that they think that that's what it is. The only thing that the eye doctors have told me is your agencies are perfect, like they're really, really good. I don't think you're going to have problems if you keep this up, that you're not going to have recurring problems again, if you keep this up, that's awesome. A lot of it is just like the years of neglect are catching back up to me, and then probably just dropping my ANC so fast caused it to happen, and now I just got to live with it. But I've met my out of pocket deductible for the year. My out of pocket max. So like, I've got, like, I'm stocked up on OmniPods. I'm stocked up on all kinds of stuff now that, like, I wasn't going to be able to afford to keep doing the omnipot, like, to keep doing Omnipod in tandem. So now I'm happy, at least I got a three month supply where I can use the Omnipod when I want to, like, I'm going to keep rocking the tandem, because I love it. But,

Scott Benner 44:39
yeah, that's awesome. It really is amazing. Do you look back at all that time and have a feeling one way or the other? Are you angry sad when you can see what you know now, how it leads to your better health, and then you look back like, what's your feeling there? Like, who do you hold accountable and and how do you feel about it?

Speaker 1 44:59
I. Look back every now and then, and I'm like, man, like, if only I would have done better before. Maybe none of this would have happened. I only let myself have those thoughts for a very short time because I just I'm like, I can't do anything about it. I don't want to dwell in the past, and so I'd rather just sit and think, you know what? All right, what am I going to do from this point forward? And how am I going to keep the a one Cs that I've had, like, I had my a 1c drawn a week ago or two weeks ago so that I could have a fresh one, even though it was only in September, and my ANC is, it's still a 5.7 so like, I'm, I'm at a point where, like, I know how to do this, and I just got to keep moving forward with this. So I'm not, I'm, I just don't want to let myself, like, get into a a negative thought of, like, what happened in the past. Like, I definitely like listening to, listening to the first. I don't think it was his first episode, but Mike the first, the first episode that he talked about, like, his problems with his diabetes. When he said that the doctor told him they wouldn't see him anymore if he didn't get his blood sugars taking control. And he thought, okay, insulin life. No. Insulin death. Like, I needed that, and I I struggled for a long time. Am I going to continue to see the same endocrinologist office that I've been seeing didn't do anything for me when my agencies were out of control? Or should I start searching for another endocrinologist office? And I did. I looked around at a couple of them, and one office that I looked at actually had working in their office, that same diabetic educator that told me not to Pre Bolus for my meals. So I said, I'm not gonna go to that office. And then I and then I just kept thinking to myself, you know, like, I don't think that I'm gonna go to a different endocrinologist and have any kind of, like, grand, amazing, like, experience that's gonna change my life any more than the podcast is. So I just need somebody to write my prescriptions. And so I'm like, I'm just gonna stay where I'm at. They already have my information. It's less work that I have to do as far as, like, signing up with somebody new, finding out where to go. The last time I sat down in her office, she's like, Okay, well, there's any, is there anything else that I need to write you a prescription for? Like she's just ready to do what I asked her to, because she sees that I'm able to to keep this up and keep going, like I go into the office and, like, average time and range is like 94% and, like, the 94% sure, like, it's, I don't like to look at that one, because it's the 70 to 180 like, on my pump, I said I have it set from 70 to 130 and even that, like, I'm still at, like, most of the time, I'm like, 80% or more in range. But like, wow, I just don't think I can go somewhere else right now. And maybe this is just, like, a, I'm getting too big for my britches kind of talk. But,

Scott Benner 47:24
I mean, I don't even know where you headed from, from this, like, it's, it's awesome. You're doing great, you know? Like, there's, I mean, I guess you could go lower if you wanted to, but,

Speaker 1 47:33
and I and I want to, and so, like, actually, right now, like, I've been working, like, so, like, I said, like, being on the tan I'm like, I love the algorithm. I love how it works. I love how the algorithm works based on the the settings you set in the pump with, like your actual basal profile. So one of the things that I had been doing like to get to the 5.5 so I want to say this, I didn't change how I ate. I didn't change how I did anything in my life, except for how I was doing insulin. Like I eat pizza at least once a week. I mean, I eat Mexican food at least once a week. I eat Chinese food, like at lunch for work, like we're eating out all the time, and then at home, my wife cooks dinner and but I didn't. I didn't want to change anything. I wanted to learn how to continue my lifestyle and and just do better with the insulin. So I quickly learned that, like I didn't, it didn't matter what pump I was on, the algorithms not strong enough to fight a rise from from pizza by itself, right? I started taking the pump out of control IQ so that I could increase my basal over like a four hour period by like 250% I would, I would do insulin for pizza and have like four slices of pizza. Do insulin for pizza, my butcher would be 80. The highest I would get is like 115 and then I would and I would cruise, and I was able, like I can manage that. I don't know if I posted it in the Facebook group, but I had pan express one night, and I did a very similar way. I was really hungry. The meal that I ate was like 220 carbohydrates or something. It needed 28 units of insulin and the pump, like I in the settings, like I could have raised the settings, but the settings were only at, like, I could only do 20 units. So I Pre Bolus 20 units of insulin when I pulled into the parking lot to go order the food. By the time I got home, I was like, I don't know, 94 diagonal down. I started eating. And then I Bolus the other eight units over a period of time. And then I did the extended bait, like the increased basal, I think I touched like 124 something like 100 like, in 100 20s, and just cruised. So, like, I figured it out, like, I need to do this. I want to let control IQ do its job the way that it's supposed to. Because I think it's, I think it's amazing. So I started creating these new basal profiles. Like in the pump, you can create a, like, a personal profile, and you can name it whatever you want to name it. So, like, I have one in my pump now that is called pizza like lunch. When I eat lunch that's pizza or Mexican food or something that's like higher fat and higher protein, I will turn on this basal profile. And in the basal profile, from like lunchtime until dinner time, my basal rates are increased by 250% and then I titrate it down. To 225% and then 200% and so it kind of acted like an increased in basal. It acts also like an extended Bolus, because in the tandem pump, you can do an extended Bolus while you're in control IQ, but only up to two hours. So it's not long enough for to handle like pizza or handle Mexican food and things like that. So I'm doing it using control IQ, and I don't have to turn control IQ off. And not that it matters, because it's not like, it doesn't really learn anything. I'm wanting it to see, to see what, what I can do, and to not have to do it. So many people have, like, I've talked to a few people about this, and they're like, Yeah, but that takes so much time. I'm like, No, it took me like five seconds to change the setting in the in the pump. So, like, it's not like I'm taking like 30 minutes to do all this stuff. It's just, I want to figure out how to make control IQ work the best for me, because it's an amazing tool. I'm

Scott Benner 50:53
not trying to scare people, but I've seen your eye, you know what? I mean, that should be enough to get anybody to go, oh, it's worth, you know, pre volusing, or changing a setting once in a while, or something like that. Like, if this is the alternative, then I'm, I'm in, you know what I mean? Like, it's the photo is shocking. You know what I mean? Like, if you're not ready for it, you're like, Oh my God. If you told me, Hey, look what happened to me. I'm never gonna see again, I would have believed that. Two seconds. Really crazy, man, what you went through? I know sounds strange coming from me, but like, what did I say that got you? Was it just the idea of, like, I think I can manipulate the insulin and put it where I needed, or was it, I don't know, Ryan, how? Also, people should know like you're one of the people in the private Facebook group that helps with like you're a group expert, right? So you leave links to episodes and things like that to help people when they have questions which I can't, can never thank you enough for but obviously, like, the podcast had such an impact on you. They were like, Well, I would like to help because we saw you come into the group and you're, I know you were the kind of person that we wanted to offer the group expert to because of the way we saw you talking to people. What even brought you there? Like, do you have that feeling of like, Oh, I I struggled for so long, and I found this thing I want to show with other people. Or were you trying to pay me back? Or what starts you like, posting like

Speaker 1 52:11
that? No, I mean, 100% it is more more than wanting to help, to help pay you back. Because, like, I definitely owe a lot to you. But

Scott Benner 52:19
do you have that feeling? By the way, I don't want you to have that feeling. But do you have that feeling?

Speaker 1 52:24
I know you don't. And I and I'm like, I'm saying it genuinely, because I tell everybody whether they're diabetic or not, I tell people that, like this random guy in a podcast really helped change my life. And so, like, I do, like, more than that, like, the the bigger part of it is wanting to help other people, because, and up until, like, I was in the Facebook group I didn't like, I'm the oldest diabetic I know, or like the old the longest amount of time diabetes that I've ever met, right? Like, I don't know many people that have had diabetes as long as me, and now I'm in the Facebook group, and there's people in there that are diabetic for 30 years longer than me. And I'm like, this is incredible. You see these posts from New Parents of diabetes that their world just ended. And I'm like, I've went through a lot of that stuff already, but at a time where it took, like, a minute to get a blood sugar reading on your pump, but, I'm sorry, on your meter. And we're at a time now where, like, things are so much different and better that there's, there's just so much more opportunity. And I really just I, like, like, I said before, like, every time I do something, I go all in and so, like, I'm able to take the information that I hear on the podcast and then doing research on my own and figuring things out, and I'm able to just, it's just stored in my head. So when I see somebody talk about a problem they're having, I'm like, I already know where to, like, how to answer this question, yeah, I honestly, I have a harder time, like, remembering which podcast episode to link be like, go along with what I'm saying. But like, I'm able to figure it out.

Scott Benner 53:48
Like, it's very helpful, by the way. I can't keep up with it. I've actually toyed recently with, like, actually making office hours for myself that are just for the Facebook group where I like maybe I have to just sit down every day for an hour or so and just answer questions. You know, it's just the thing I can't keep up with. I could sit down for eight hours and answer questions, by the way, and I wouldn't get caught up. So you're counting on people's kindness, and you're hoping that they, you know, know the right what places to point but it's people like you who like you're motivated. You have that you have good energy about it, like, Hey, I know where the answer is. It's right here. Like, go look. And you can't, you know, you can't force people to listen, or anything like that, but at least you know, you put them on the right path, and if they can get to it, then that's great. If they can't, hopefully they'll come back and try again, but it's just tough, right? When, you know, I mean, when you've experienced the outcomes that you've experienced, to see somebody who's you but 25 years younger and hasn't had trouble yet, and you think if I could just put them on this right path, right like this will never happen to them, absolutely.

Speaker 1 54:57
And I mean, it's just like my daughter. Has a friend. My older daughter has a friend who she's type one diabetic. They were in the marching band together, and she's got gastroparesis now to her, my daughter had a birthday party, her birthday last February, and we had all these kids over, and she was one of them. And so I was talking to her a little bit, and I was trying to tell her, like, listen, like, you should listen to this podcast. And she was like, Yeah, but I'm different, like that. And I said, Hold on a second. I said, watch this. And I took out my phone, and I said, Hey. I said, my daughter's friend. She's diabetic, she's got gastroparesis. She thinks she's she thinks she's alone in this. I can't remember exactly what I how I worded it, but like, within, within like five minutes, there was like, two or three people that commented that they that they had the same thing going on. And I showed her, I said, Look, you're not alone. There's so many people in this Facebook group that it's not going to take long to get answers. I said, I think you should listen to the podcast and join this group. And I don't know that. I don't know if she did or not. Like, I'm not like, I'm not going to keep tabs on my daughter's friends, but I just, I wanted her to see she's not alone. And I and I tell people that all the time that come into the Facebook group, like, there's so many people in here that if you ask a question, you're going to get an answer within minutes, usually. And it's kind of it, it could be a life changing answer if you just implement what you see and what you hear and and I think that's the biggest part, is like, you can tell people all day long to do stuff like you said like, but you can't that person has to implement it into their lives to really make it work for them. I think that some people just, the more you, the more it happens that are, the more they hear it, it might make them do it. So like, I try to, I try to answer as many of them as I can, but like, it's, it's nice when I see other people in the like, other group experts. And I'm like, All right, like, that one's handled. I'm not gonna, like, I'm not gonna beat a dead horse with it. Yeah, I

Scott Benner 56:39
know I feel that way sometimes, like, Oh, good. Somebody got that one. You know, you can expose people to the light. They gotta let it in and, oh, yeah. I mean, that sounded so verbose, like the light, but I just mean, like, good information, you know what? I mean, like, there's, you know, you've detailed it. Plenty of people have been on here, have detailed it. You can live with diabetes for a week, a month or 10 years, and nobody will ever tell you something as simple as, you know, insulin doesn't work right away, so you have to put it in a little before you eat. Yeah, you know, and how life changing that one decision can be seriously, I look back on that moment for you and your story, and I think that person is maybe as culpable for what happened to you as anybody else, just telling you, like, don't put your insulin until after you eat. Like, just being that wrong about something so basic, and look where it led you, you know. Oh, yeah. And if you don't decide to get a pump and don't meet a pump trainer who goes, Hey, have you checked out this podcast? And if you don't, then go actually check it out and try it, or relate to it, or like, you know, you also Brian. You could have logged on and just not liked me. I mean, you might have been like, this guy's voice bothers me, or I don't like his ad, like, who knows? Like, you might not have intersected well with it, and then you're lost again, like, and then you're just blowing around until, hopefully you land on on a good answer that works for you. I just feel lucky that you found it. I feel lucky that everybody finds it, because, again, it's not, I don't know how many times I can say this. It's not like, I know a lot of like, super secret stuff that nobody else you don't even mean, like, it just, we just talk about it in a way that is accessible for people.

Speaker 1 58:13
Yeah, no, absolutely. It's just 100% like, just the way that you talk to people in general is just like you get, you get this information from people who don't even know that they have it, and then they're just telling you their story. And it turns into something that helps, like the management series in the in the podcast, like, definitely are, like, incredible, and everybody should listen to them. Like, I've listened to the pro tips like, three times through, but I learned so much from other like, just conversational episodes that, yeah, I agree that most people don't like if you're not listening to all of them like that, there's stuff that's there's stuff that's left on

Scott Benner 58:51
the table. Listen, I understand everybody's got a different life, you know, but I the people who say to me, like, because I get it all I get, I don't have time for this. And all I could think is like, Okay, I mean, it's just your health, but whatever, the one that recently, somebody will pop in and say, I don't learn that way, or I can't, like, I have ADHD, I can't listen. I'm like, you know, like, I don't know how you can come in here, tell me, Hey, my seven year old needs help. I'm afraid we're killing him. And they go listen to this thing. Oh, I can't listen to a podcast. Like, oh, I mean, what do you want me to do? You may come to your house and whisper it into your ear until, like, you understand. Like, I'm not sure what, like, at what point do you need to like, I have ADHD, well, then listen to it slower, in smaller chunks. I don't know. Like, I have no idea. Like, I'm sure it's not easy to have ADHD, but like, I don't understand, not going well. I have ADHD, but I'm gonna try this, because this sounds important, and Ryan and 9000 other people in here are telling me that I listen to this podcast, and I'm doing great now. And the secret is in there, what you said, By the way, Ryan, like, if you listen to the show every day I put it out, you'd spend about five hours a week. Listening to it. I guarantee you're all scrolling Tik Tok for twice as much time. Ryan's right, like 20 minutes into a conversation, a half an hour into a conversation, sometimes five minutes into it. Sometimes at the very end, a person will just say something almost off handedly, and it could very well and often, is the thing that's going to save you, because eventually you you will hear somebody mimic the problem you're having, and then they're saying it out loud, because they generally have an answer, or they know where to go to find out, or something like that. Like, that's the, that's the key. I mean, oh yeah, you got it right. As far as I'm concerned about the way the podcast works, you have it exactly right? Yeah.

Speaker 1 1:00:39
I mean, it's, it's incredible. Like, like I said, like being diabetic from before, I can remember, like, I listen to every episode, and I'm like, I can, I can almost relate with something that every single person is saying. I don't know, man, I just feel blessed that I was able to, like, find it, and it's just it. It's so awesome that like that. This is out there for people. It needs to be more. I know like, you say it all the time. Like it, I know that you hope it reaches so, like, millions and millions and millions of people. And I do too, and I and I just really think that, like, it could make a huge difference in the world for everybody to know it. So I do, I tell, I mean, I tell everybody about it. Like the babysitter I had when I was a baby, like she was my babysitter before I was diagnosed. And then she, like, learned so much about diabetes. She got diagnosed with diabetes when she was, like, I don't know, 11 or 12 or something. I can't remember how old she was or she had she's probably older than that, because my, she's my, maybe 16. She told me that just from, like, learning from me and like, taking care of me as a baby, it helped her with her diabetes. And like, I told her about it. Like, I still, I still talk to her every now and then and so, like, I'm telling everybody

Scott Benner 1:01:42
I do this thing. I have these charts that I use when I speak in person to try to make that point, which is, I'll say, like, Okay, so here are my friend and my daughter's graphs, and they're really, they're terrible, they're all over the place. And I said, and then, like, I spent some time privately speaking with her, so all I did was download the ideas that I implemented back then for my daughter to another person, and I said, Now look at their graphs. Look how oddly like similar they are to each other, right? These are two people who live in two different places. They eat two different ways. They wearing two different pumps. They have cycles that are on two different cycles. Like, all this stuff about them is different, but look how similar their outcomes are. What is the tie in here? Right? Like, why do these graphs and these graphs look the same in two completely different people? And the answer is, I'm the one who explained to both of them how to take care of their diabetes. When people say I'm different, or, you know, I'm brittle, or you don't hear people sad as much anymore where, like, you don't know my diabetes is different. You're all different. And there's a lot of tons of variables, but the one thing that never changes is that the insulin needs to be in the right places at the right time. And that really is as simple as that. It's not easy to accomplish, maybe, but it isn't more difficult than that. Truth, if the insulin was there in the right amounts at the right times, you wouldn't have excursions like that. You wouldn't get low later, and you can figure that out now, go listen to a free podcast until it makes sense, and then go live your life and don't have an eye surgery one day. You know what? I mean, like, 100%

Speaker 1 1:03:15
and, like, it's funny because, like, I, I was talking to my wife about it one day, and, I mean, this is probably months ago, and I was like, I go, it's crazy how like, easy this actually is. She's like, easy. She goes, You know, this isn't easy. And I said, but it's really not that hard. Like, once you just once you learn the information, like you said, timing an amount, once you and like, and everything's different, right? Like, one of my favorite things in the world is potatoes. And I think I've eaten potatoes like, four times in the last 11 months, because potatoes mess my blood sugar up. And so, like, I'm willing to cut that out. And then every now and then I'll like, Alright, I'm going to try to figure this out. And like, I'm just, but it's okay for me to, like, it's okay to, like, just remove something or to do something different, to be able to manipulate your blood sugars to work with, with what you want to eat. And so like, I can eat potato chips because the fat, or I can eat french fries because the fat helps. But like, if I just eat a potato, my blood sugar just shoots, just shoots straight up. And I know a lot of people are like that, and I know there's different ways to cook them and different things that like that work. But like, You got to spend the time to figure it out, and it really is just implementing what you learn and trial and error. I try to tell people like and without pushy and without being like, I know everybody's different, but don't wait those three months between end of appointments to make a change in your pump. You are allowed to get in the settings of your pump and increase your basal rate, you're allowed to change your sensitivity, factor, your carb ratio. Like, you can figure these things out on your own. And then if, if you really are the type of person that needs to go talk to your acknowledged about it great, make notes. Like, here's what I did, and here's the outcome, and here's this and and just go talk to them and just tell them, hey, look, here's what I tried. Is there anything different that you see? Like. Maybe it's somebody has a great endocrinologist that's like, oh no. Like, what you did really worked. But why don't we try this instead? And like, and really get it going, or you have the endocrinologist that are just like, oh yeah. Maybe you shouldn't have done that, because your drop, your blood sugar dropped down for one for one, CGM reading right? Like, one way or the other. It's your life. Yeah, it's your life. Get out there and just, like, really take control over it and don't turn out, like, my eyes, like it's

Scott Benner 1:05:26
No, I mean, listen, it's sad, right? Like, I mean, what happened to you is really tragic. It really is. I mean, you mentioned Mike earlier, from complications is complicated, and I think buying a condo, condo shopping, yeah, is maybe his other episode. You have no idea how many people, like, adults living with diabetes, have been helped by him sharing his story. And so where, in the past, I would have been afraid, like, oh, you know, you're gonna, Ryan's gonna come on, he's gonna talk about this eye surgery, trust me, if you guys could see it, you'd be fucking freaked out. And people are gonna see that as, like, you know, fear mongering and everything. But I don't know, like, I just, I'm not saying it's gonna happen to you, but I'm saying, you know, wouldn't you like to make as sure as possible that it's not going to happen? And you know, if the answer is just using your insulin better and taking a little control and not being so like, oh well, this is what they told me to do, and I did it. It didn't work out. It's not my fault. I followed instructions. Like, you know, that kind of stuff. It's not unknowable how to handle it, and it is not crazy to think that if you ignore it, you're going to have a significantly poor outcome that will impact your life and possibly in an irreversible way. That's just true. It sucks, but it's true. And if you're listening right now and your kids five, and you're like, upset by it, like, I mean, good news, right? Like diabetes, pro tips, you know, the bowl beginning series, you should be able to absorb everything that Ryan heard that helped him. And if you don't have a clear path after hearing those things, or you have ADHD and it's hard for you to listen, or whatever else is going on in your life that you don't have time, then go to the Facebook group and ask questions to people. And you know, I always tell people, a year later, you're gonna look back and not recognize yourself, Oh, yeah.

Speaker 1 1:07:05
I mean it, it's incredible. Like, my, like, my daughter, she's, she's five years old, and like, she'll just be sitting and she's like, Daddy, what's your blood sugar? And like, I'll say it, and she'll be like, okay, like, I think you like, she's like, maybe I'll go get your glucose tablets. Like, even just like, the talking, like, it's helping my five year old understand, yeah, like, what's going on? Like, I'm like, I'm not gonna lie. Like, I'll be sitting on the couch sometimes, and I'm like, Oh man, I left my water in the bedroom. Hey, Harper, go get my go get my water. She'll come out with my water and my glucose tablets. And I go, what'd you bring me those four she goes, Ah, just in case, when you start learning and you start caring, you start talking, you open up the world to the other people around you of what's going on, and then then you have this group of people that is also able to help you, like I said earlier, like with my wife, like the the two weeks that she was managing my diabetes, my average blood sugar was 124 or like 125 which, like, I couldn't have done That myself years ago, she's only able to do it because of me listening to the podcast, her listening to what I'm saying, and then she figured out how to use the PDM with me, not being able to see to even show her how to do things. Well, that's

Scott Benner 1:08:10
such a good point, really, is that now she didn't grow up with diabetes. She has no background in it other than being married to you, but you weren't exactly light in the world on fire while you were married. So So she's a proxy, and only understanding it through your retelling of a telling of something. And so just, I mean, I don't know, I'm not frustrated right now, but like, if I start talking about, I'm going to get fresh, like, just listen to the stupid podcast and then feel better. It's free. For God's sakes, you don't have to pay for it. Like, there's ads. It'd be lovely if you listen to them, because that's what keeps the whole thing going. But if you don't like all right, I get it. Just do better for yourself, because the truth is, the better you do, you're going to go back to an endocrinologist who hopefully is not going to fight you, and you're going to and maybe you have to tell them a couple of times, like, what's the secret here? I learned how to do this on this podcast. I've heard that from somebody else, they'll say, then they'll tell somebody about the podcast, and then another person doesn't have Ryan's problems, and on and on and on and on and on. And there are tons of people running around in this world using insulin who don't know what the hell they're doing with it, and they're just hanging on until something goes wrong. And it just doesn't need to be like that. It does not need to be that way. Yeah, all I want for all you is to just be as healthy and happy as possible. And to Ryan's point, that it feels easy now, you know, look, look, and if you're not a sports fan, like this might allude you for a second, but everyone's going to know this guy's name right now. So I'll use it as an example, because he's he and his brother are very famous, but I grew up in Philadelphia watching the Eagles play football. And for the last decade, until last year, we had a center who was undersized, Jason Kelsey. He was too small to be center. As a matter of fact, I remember when they drafted him thinking, like, this guy is going to get playing on his ass and never get back up again. Like there's no way he's going to ever play and he ends up being a Hall of Fame. Center, and when you watch him play, it's because he understands leverage and angles and the little things about football and his job in football that, I think, that other people ignore, and just these little things. So when you look up and you see a guy who's six, eight inches shorter than the guy across from and he's throwing him on the ground like a rag doll. It's not because he's stronger, right? It's because he understands the game. And you watched him play some days, and you thought, man, it looks easy for him, you know, like he he transcended to a place where it looks easy. And I know it's not easy. Football cannot possibly be easy, especially at a professional level, right? But you're watching this undersized Guy No one would have ever pointed to and said, Oh, he's going to be, you know, the best at this. And there he is out there, just gliding along and doing it and that that's kind of how I see you and your diabetes. When you say, it feels easy, like you have enough tools now you know enough things. You know how to approach things from certain ways that it just kind of goes your way most of the time. Am I right about that?

Speaker 1 1:11:02
Oh, I'm 100% right. Like, I think one of the first things like that Jordan told me was like, Hey, if you want to have lower highs, lower your high limit. And then I heard you say it, and like, within the first week, I think I went from, like, my high limit being 180 to 150 and then I told myself, like, once I get to 100% in range at that, I'm going to lower it more, and I'm going to lower it more and more and more. And it's just yeah, like, these tools that you have at your disposal are there, and once you learn how to use them, nothing's going to be able to stop you. Yeah, and you just have to, you just have to do it. Just get out there and do it. Listen,

Scott Benner 1:11:38
forget diabetes. Like you've got the right tools. You get what you expect. Yeah, that's most of life is trying, you know? Like, I don't want to, like, turn this into, like, a Chicken Soup for the Soul podcast, but, like, I mean, there are some things in the world that can stop you. There's no doubt, right? But for the most part, you're the master of how you feel, what you think, what you try, and often, just trying is more than enough. You know, like, people will ask me, like, How'd you make this podcast so big? I was, like, I just made the podcast, right? Like, I just, I mean, there's little, there's little things about it that obviously work for people, and I had to get lucky, and know what they are. But you think, like, oh, he just got lucky. He's got a deep voice, or he maybe it's just a natural, like, conversationalist, or something like that, but that's not true. Like, I've tried to tell people, like I grew up listening to talk radio and listening to, like, skilled conversationalists have conversations with people this way, like, I don't look I'm not looking at you right now. I don't look at most of the people I talk to. I've never met them before. They pop on and we start recording. You know, you just went through with it. You know, you went through this with me an hour and a half ago. But I get on with people. I say, Hey, do you have any questions or concerns before we start normally, they don't, or they want to tell me they're nervous. I say, don't worry. It's going to be okay. Let me tell you a couple of things. You don't need to use your full name, as a matter of fact, if you don't want to use your real first name, first name, we'd be happy to make up a name for you right now. That's fine. Don't use other people's names unless you're sure that it's okay. I can't be your guardrail. So you know, if you get super comfortable and start saying something crazy, I'm just gonna ask you questions about it. I'm not gonna stop you and say, Oh, Ryan, I don't think you should say this on a podcast. And then I go, okay, is that it? And they go, Yeah, I'm like, Okay, well, gather yourself, I'm gonna hit record and we're gonna start. That's as long as I know people before I have a conversation with them. That's not because I'm awesome at this. It's because I've been listening to people talk to each other, like, for 30 years. I have tools, so I've got my tools, and then I decided to do the thing. And now it works. There are days, by the way, that you don't walk in here super excited. You're not like, oh my god, I can't wait to record another episode of the podcast. Like, like, you know, like, there's days where I'm tired or I don't feel well, or, like, right before you and I jumped on, like, Arden's having trouble getting your Dexcom to connect. Like, I have actual problems right now that I need to deal with. And it would be great to say to you, Hey, Ryan, let's do this another day. Like, I don't feel like doing this right now, but that's not true. Like I do feel like doing it right now, and I am going to, I'm going to do it every day, whether I'm sick or tired or it's inconvenient, because this is what I do, like, and I don't know, like, people should put that effort into their diabetes and their health in general. Like it sucks some days, it's easier some days, but this is what I do, and it's a net positive for me when I do those things. And I'm not trying to say I don't like making the pie. I actually I love making the podcast. And I know you probably don't love your diabetes, but you gotta love ease of living and health, right? Is that not a thing that you could focus on? It seems to me, oh

Speaker 1 1:14:44
no, absolutely and again, like over the last 11 months now, like really getting control of it, like everything else in my body feels better, like I feel I just, I feel better with my blood sugars being under, under control, like I, you know? I mean when, when my blood I mean, like a 10.7 A, 1c, that I had in. January is an average blood sugar of 278 Yeah, and now at a 5.7 my last one was a 5.7 like, that's such a big difference of the toll that the interior of your body is doing on itself that now isn't there, it opens up so many other things. And I did not know this until listening to the podcast, but proper insulin makes you gain weight. I've put on like, 20 pounds since I started listening to the podcast. Luckily, I'm active, but over the last month, not being able to do anything from all the surgeries. Like, now I'm like, Oh man, I gotta lose weight. To me, it's like, this is awesome. Like, I'm I'm getting chubby because of because of better health, and now I just gotta fix that

Scott Benner 1:15:39
part. So now you're up to the like, maybe now I gotta look at my calories. Yeah,

Speaker 1 1:15:43
now, yeah, exactly like, now I like, all right, I figured out the insulin. Now, let's figure out everything else, to just continue to live a healthy life, like even putting on the weight. Like, my my cholesterol still good. Like, I'm still good. But I need to, I need to at least continue to continue down this health journey and just, and just continue to do a better job. Because, like, I have people that rely on me every day. Yeah, man, no, I hear you. There's so many people in the podcast that I, like, I give it up to all the parents out there and all the and the people who are caregivers for for their little type ones. And it's just like, I can only imagine. Like, I know it's hard for me. I know that it was hard for my parents. Like, I feel for you and like, just, know, like, the group experts, the whole group, like, it's not just the group experts that are there for people. There is, there's 50,000 people in that group, in that Facebook group, that are there for you, get on, ask questions and and just, just take it for what it's worth. But maybe, maybe, maybe there's one person in the in there that will answer something in a way that somebody will be able to resonate with. And it might not be it might not be you, Scott, it might not be me, but it could be anybody. And I just, and that's like when I try to answer questions, I try to answer the question, give advice, but then also tag the podcast that helped me with it, because I know that I'm probably not as good at describing it as what you and Jenny were in the episode about fat and protein, right? Like

Scott Benner 1:17:00
there's so many you taught your wife, like, by bugging the hell out of her. Sounds like, Oh yeah,

Speaker 1 1:17:07
you know. But like, for me, like, part of it for me, like an like, not to get in a whole nother, like conversation, but like, learning about diabetes and how, like, have being a diabetic is like, a bigger chance for my daughter to get it. Like, it's important for me to really learn everything, because if she does get it, I want to make sure that I that we're able to take care of her properly. Yeah, and, and the time that I spent with my wife asking to take care of my diabetes. Like, I know that if, if my daughter did get it for some reason, like, by chance or whatever, she's gonna be fine, right? Like, I'm not gonna be worried about it. I'm not gonna be like, I mean, don't get me wrong, I'll probably worried. But like, I know that I already have the tools. I know how to make it work, and I know what, what technology to get to make to just make it easy for and like, as many times as she's like, I mean, she's told me, Oh, Daddy, I want diabetes. I can be like you, and I'm like, you don't want

Scott Benner 1:17:51
it. I promise you find another way to be like, Daddy, make a cabinet. Yeah, yeah.

Speaker 1 1:17:55
Pick, pick something else. But you know, she sees problems with she sees my eye problems. And like, she said, like, she said, like, I don't want it, Dad, I said, I don't want you to have it either. Like, but at least I know that, like, if something happens that, like, she's gonna be fine. You

Scott Benner 1:18:07
know what to do? Yeah, I appreciate that. I really Domino. I'm gonna stop at that, because I think that's a I think that's an awesome way to stop Brian, I can't possibly thank you enough for doing this. I know it takes a long time to get on the podcast and everything, so I appreciate it. I appreciate the effort and time that you put into helping other people. I appreciate knowing that this was valuable for you. Because, like I said, I sit in a I'm in like a 10 by 10 room, like by myself, pretty much, like 10 hours a day making the podcast. So I'm only able to do what I think is going to be valuable. But I almost I need more touch points like this. You know, that's why hearing back from people is is really helpful. So I appreciate your feedback too.

Speaker 1 1:18:49
Well. Thank you, Scott. I really can't say it enough. Thank you. Thank everybody in the group and just this is awesome. It's

Scott Benner 1:18:54
absolutely my pleasure. I had a great time talking to you. Hold on one second for me. All right.

Speaker 2 1:19:02
You stay tuned

Scott Benner 1:19:07
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#1414 Great Flood

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Erin’s 10-year-old daughter, Kylee, was diagnosed with type 1 diabetes two years ago. Erin and her husband struggled with the diagnosis, asking, "Why us?"

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

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

Karen's daughter was diagnosed two years ago. Her and her husband struggled at first with the diagnosis, asking why them? Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan. Don't forget, 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. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com I know that Facebook has a bad reputation, but please give the private Facebook group for the Juicebox Podcast, a healthy once over Juicebox Podcast, type one diabetes. The group now has 47,000 members in it. It gets 150 new members a day. It is completely free, and at the very least, you can watch other people talk about diabetes. Did you know that, despite the increase in CGM use, only a third of people living with diabetes meet the recommended guidelines for healthy glycemic levels. Today's episode is sponsored by Medtronic diabetes. Learn more about hyperglycemia at Medtronic diabetes.com/hyper today's podcast is sponsored by us med us, med.com/juicebox you can get your diabetes supplies from the same place that we do. And I'm talking about Dexcom, libre, Omnipod, tandem and so much more us, med.com/juice box, or call, 888-721-1514,

Erin 2:11
well, my name is Erin, and I'm talking to you today because my daughter Kylie was diagnosed with diabetes type one, almost Exactly two years ago. How old is

Scott Benner 2:22
she now? She is 10, and she was diagnosed at eight.

Erin 2:27
So she was diagnosed actually two weeks after her ninth birthday.

Scott Benner 2:30
I see okay, and you are American, yes, you said the diabetes part. Like, do you ever do you know people who say the date backwards? Oh,

Erin 2:45
you did, yes. That's funny. I didn't even think about that you

Scott Benner 2:48
said. You said it like you were charting it. Does that make sense?

Erin 2:53
Probably, maybe my mind, I do kind of that chronological order, where I date things. It's really

Scott Benner 2:57
interesting. Yeah, diabetes type one. I was like, oh yes, this is, this is like a scene from Grey's Anatomy. This is very exciting. Okay, well, I

Erin 3:05
work in a dental field, so in my mind, that's kind of how I guess I classify things as well,

Scott Benner 3:10
very nice. Felt like I heard that that's all any other type one in the family, or other autoimmune stuff.

Erin 3:18
No. So she was a surprise to us. We had no we were blindsided. None of our family, okay, we asked all the family, and nobody in the media. We had a couple, maybe type twos, and like the great, my great, great grandparents, but nobody in the near family. My mother in law is adopted, and she does not know anything about her background, so there's a possibility there. But other than that, we we were completely blindsided.

Scott Benner 3:47
Got you I understand, okay, in hindsight. Now, when you look at your own health, do you see other autoimmune types of stuff like celiac or Hashimotos or stuff like that? No, no. Okay. How many other kids or no one could I

Erin 4:01
do? I have two. I have one other, and he's boy, and he's gonna be 13, and at the beginning of next year. So

Scott Benner 4:09
are you in like, like, your late 30s? I am. That was that upsetting to you. I don't

Erin 4:17
know if I'm ready for it. I just turned 39 and I'm like, okay, hitting those 40s.

Scott Benner 4:23
Just loved your response. You're like, I am. Yes, I How did you know I look so young in person,

Erin 4:30
right? Exactly? I was like, dang it, he guessed, you know.

Scott Benner 4:33
So we have a bit of a short window for you today, so I'm gonna do a little thing where I just kind of jump forward a little bit and ask you what it is that you were interested in coming on the podcast to talk about well, so

Erin 4:46
the reason why I kind of reached out to you was Kylie had it very interesting, and she had a lot of things happen to her very quickly, on top of her diabetes diagnosis. And I kind of want. To talk to you and in hindsight, now, after it being two years, I hope that what I can tell people gives them a little ray of hope in all aspects, because we did. We were in a huge slump for a while, our life got turned upside down. So having no idea that type one was even a possibility. My daughter all of a sudden, you know, she's playing softball. She's very, very active. All of a sudden, she is tired. She's exhausted. She's, you know, we are on her about, you know, why can't you focus? Why can't you do all these things that she normally, you know, would do? Because we were clueless, and we ended up having a flood in our house, which we have no idea how, why or what, but it took out her bedroom, it took out her bathroom, it took out the hallway, and that's how we found out we had no idea about any of the other symptoms. They weren't a thought process whatsoever. And she started going to the bathroom every 20 minutes after they, you know, pulled all the plumbing, pulled everything from our bathroom, and she was coming into our master bedroom, and every 20 minutes, I told my husband, I said, That's so strange. He said, You know, maybe she has a UTI. Maybe she has something, again, type one diabetes was not on our radar. So we finally got her a doctor's appointment. And the day of the doctor's appointment, we had to drive 45 minutes to get there. And the doctor is a good personal friend, and she took her blood sugar, and she's like, She's diabetic. We're like, I just cried because I was like, how? Like, How is this even possible, right? So in our area, we had two choices. She was like, you can either stay here in this town and go to the hospital here and they will fly you to one of the bigger cities. So I live in northern New Mexico. So my choice is either Denver or you drive back home 45 minutes, and then they're gonna fly you from your hospital to Albuquerque. So you need to decide, you know, where do you want to have her end appointments for the rest of her life, at least until she's 18? There was so much information. I was like, I'm doing what? Yeah. So we

Scott Benner 7:12
decided, am I flying to Denver Exactly? Yeah,

Erin 7:15
exactly. That's an eight hour drive for us. And I'm like, Oh, I don't you know that commitment is a big commitment. Albuquerque is three and a half hours. That's still a big commitment. We don't travel to Albuquerque very

Scott Benner 7:27
often. You don't at that point even understand, I would imagine, like, why is it i? Why can't you help me? Like, why am I going somewhere else? Right? This episode is sponsored by Medtronic diabetes, a company that's addressing hyperglycemia head on, Learn more at Medtronic diabetes.com/hyper and now we're going to hear from Medtronic champion Maddie. Hi.

Speaker 1 7:48
My name is Maddie Fisher. I was 12 years old when I was diagnosed. It was really, really hard through my adolescent stage. I hated diabetes. Sometimes I would cry and just say, like, Why me? And I think you know, just from hearing from people in the community that a lot of people have that very similar story. What did you find that helped? I was able to see all the latest technology that other type one diabetes, especially in the Medtronic champion community, were using, and I stumbled across the N pen. And this girl was using the N pen, I just messaged her tell me all about this. I called Medtronic, and the lady that I was talking to, she's like, Yeah, I totally understand.

Scott Benner 8:29
It feels like meeting more people helped you. Yeah,

Speaker 1 8:32
I definitely did. You know, I used to hide everything, and now I wear it with pride. What

Scott Benner 8:38
have you learned since you've been wearing your technology openly, there's great

Speaker 1 8:42
support. And then, you know, you have Medtronic who just elevates that support.

Scott Benner 8:47
Prolonged hyperglycemia can lead to serious health problems and long term complications. Learn more about hyperglycemia at Medtronic diabetes.com/hyper

Erin 8:58
Yeah. She was like, just, you know, there is absolutely no pediatric endocrinologist in this area. I was like, what like, how do we not have that hair? So we drove the 45 minutes back home, and my daughter's in the back seat just falling asleep, like she couldn't even keep her eyes open. Her blood sugar when we were at the doctors was 500 and so they sent us back. And by the time we got to our local hospital, you know, they had to go through all the protocol again, even though it just had a doctor called ahead, right? And they were like, it's not reading on our you know, machine. We need to do blood work. So we sat in the hospital for almost four hours with little to no information. Our hospital is a small, rural hospital, and next thing we know, they're like, we're we're sending you to Albuquerque. And we're like, okay? And they're like, well, she's in DK, so we need to send you guys like, now. So can

Scott Benner 9:55
I ask a question? Had you sat there long enough that you could have driven to Albuquerque? I. Yes, yeah, okay, oh

Erin 10:01
yeah. My husband was able to, as I sat in the hospital, he was able to come home from work, change his clothes, come to the hospital and hang out for another hour. And he he works about 45 minutes out. So we were very frustrated. We were like, you guys have any information? The nurse literally came in and was like, did the doctor tell you she's in? DK, we're like, no. Nobody's told us anything. They took her blood, they left. We really haven't got anything. So she was air flighted out, and we went to that hospital, and they were on it. Long story short, we were there for three days. We got a lot of information, and then, you know, sent home, and we've been working on it. Our endo has been very happy with everything that we've been doing her first appointment. So when she was diagnosed, she was at four teen point something on her a 1c is what they were averaging at the hospital. And then when we came back for her like, three month checkup, she was at 6.4

Scott Benner 11:00
when you look back, how long do you think this was going on for? Honestly,

Erin 11:03
to think about it this time frame, plus two years ago, just so we had, yeah, a family vacation around Fourth of July. She had an all star softball game that she was playing like this weekend two years ago. So we think it was at least probably four months by what they're estimating, the ANC, and just looking back at all the symptoms that she

Scott Benner 11:27
had first, that you saw along the way, when you can look back at it again, yes, and one of the

Erin 11:31
ones that I see and I process now that I really wonder about is she had a lot of abdominal pain months, Months before we noticed, you know, the thirst, the urination, all of that, I would guess, she would come in every night and be like, my stomach just hurts, and we're like, Well, do you need to use the restroom? You know, maybe you're eating things that are, you know, upsetting your stomach. And she would just be in knots. And then it would go away. And couple days later, same thing, and then it finally, it went away, and we didn't think much of it.

Scott Benner 12:04
Interesting. I wonder. I'm gonna think about that and do a little research while you're talking on the on the stomach pain idea, because people bring it up all the time, I never really dig into it. So, okay, so what is the impact on her? How does she respond to this? Oh, I mean,

Erin 12:20
she has been a trooper. She does so we're MDI. She's continued to be MDI. She does not want to pump. She does use a CGM. We did switch over to the g7 which she does really like due to the size of it. My daughter's only 72 pounds. She's very thin, very muscular. It slows her down. And when it slows her down, that's when she's like, I wish I didn't have diabetes. Oh,

Scott Benner 12:45
I see, yeah, does she talk about it? A lot.

Erin 12:49
She does, and she we've been very blessed. She is willing to talk to other people about it. We have to, you know, we want everybody to know, so that if we can't watch her or see her, hopefully something ever happened to her, they would be aware. She has some great friends at school that have known from the beginning, you know, and they're like, let's go to the nurse. You just are acting funny or, you know, yeah, they're very receptive. But she, she's really good about letting people know, and not being afraid to tell people about it, you know. And she's like, Yeah, I have diabetes. I

Scott Benner 13:25
wasn't sure when you first said. I thought when you said she was good at talking, she was open to talking to people about it. I thought you meant therapy, but you just meant, oh, friends in her life and stuff like that.

Erin 13:35
Yeah. Okay, yeah. Thankfully, as of right now, I don't see any mental like frustration or load or anything that would need therapy again, she's 10, maybe when those hormones kick in and all that, she might need some help, but no just speaking to people in general, or people asking her questions, you know, she does her injections in public, will look at her, you know. And if people ask, you know, she's like, I have diabetes, so she's, she's very vocal about it. Okay,

Scott Benner 14:05
do you How are you guys handling it? You're the rest of your family, your your other child, your husband, yourself.

Erin 14:11
My husband, curses every day about it. Wants to know why, why? Why her. I think I spent the first three months of this diagnosis, just in tears every night, you know, just streaming tears down my face, trying to figure out, like, why? How my son, he's done very well, but he definitely has told people, you know, my my sister is my parents favorite. And they're like, Well, why do you say that? You know, my mother in law quartered me one day, and she's like, just, you know, your son? Know, your son asked me why Kylie's your favorite? And she's like, and I told him, it's not that, you know she's their favorite. She just takes so much of their time. Some days it's really hard for him, but he takes it really well, and he's been, honestly, very awesome. And. The fact that he's picking up and learning and he's helping us when, you know, we have to go to work, and I need somebody with her for a short period of time.

Scott Benner 15:07
So it's interesting, is that that that would feel like favoritism when to your daughter, it feels like unwanted attention? Probably, I don't want to be doing this, you know? Yeah, and by the way, if something else, it would just be something else. In case you're wondering, you weren't going to get through parenting without the kid being upset about something. So you're fine. This is what it is. Yeah, I do think that no matter how well it seems, that everyone else is adjusting, and I'm sure everyone will adjust, but there's still impacts. Like, you can't just say, oh, there's no impacts. Oh, my son's 24 now, and he'll talk about, like, you know, you'd be on your way to do something. And then all of a sudden everything stopped. And then we stood there for 20 minutes, like, making sure Arden was Okay before we did something, or that kind of thing. And that obviously stuck with him, because he's older now, and he still remembers

Erin 15:59
it, you know, yeah, we do a lot of you know, my husband will tell my son today me and you are going to go out on the boat and go fishy like your mom has, Kylie me, and you're going to go spend time, and we're having to make a conscious effort to make sure that we spend time, which is horrible. It sounds horrible that you have to make a conscious effort just to spend time with one child, but we want him to know, especially now that he's mentioned it. It's not that, you know she's our favorite we tell her she's our favorite daughter, but you know he's our favorite son. That's just how it is.

Scott Benner 16:33
Well, you know what? If it wasn't this, it would have been softball or something else. You're always at softball, but you know, you would have just, trust me, does he play a sport. So he

Erin 16:41
has, he does. He's played baseball since he was little, but he's getting to that teen, teenage year where he's picking and choosing. So he plays soccer as well. So he does a little bit of everything, and then he loves to bass fish. So we try to get him out there doing that as well. Don't

Scott Benner 16:56
you live in a desert? Where is he bass fishing?

Erin 16:59
So I do live at a desert. We live in the high desert, technically. So we actually have a really nice, very large lake 45

Scott Benner 17:06
minutes from us. Oh, it's lovely. Yeah, I love that. The Great Flood is how you were able to figure out she had diabetes, just because it diverted her to another bathroom. That was all right, yeah, that is it. You were 100% correct. A kid was peeing a ton before, but you didn't. Hey, is there a chance she she flooded the she flooded the bathroom. Was that pea or water you saw going through the house? Oh,

Erin 17:26
oh, yeah. So we had the great flood, and then we had the tortilla incident, where she bit a tortilla and took one bite out of us. We had this little, teeny, tiny bite mark in it, and then the rest of it was floating in the toilet, in my toilet. And I was like, Kylie, did you eat a tortilla in the middle of the night? And she was like, No, we're like, What do you mean? No, we're like, this soggy piece of evidence that I have to, like, fish out of my toilet.

Scott Benner 17:50
She was that hungry during the middle of the night that she

Erin 17:53
Yes, and she didn't remember that she ate it. So she was coming to our room to go to the restroom. On top of it, she was stopping to get food, and then not remembering the food. And then I was like, I need to get her a doctor's appointment really fast. I don't understand this.

Scott Benner 18:07
She's sleep walking tortillas before we move on, Aaron, stomach pain prior to type one diagnosis can be due to several factors. This, of course, is from chat, G, P, T, 4.0 D, K is the serious complication of unrelated diabetes, but blah, blah, I don't think it was that in the because it happened so far. In the beginning, gastroparesis, probably not that I would think that she didn't have nerve damage from it, but high blood sugars, elevated glucose levels, can affect the digestive system, leading to abdominal pain and discomfort. And then the other eye possibilities for pancreatitis and an infection, but I bet you it's just the high blood sugars creating that problem. Yeah, that was kind of our thought process on that. Yeah, let me ask you another question about the time spent kind of crying and wondering why that happened to you, and you know, that kind of to your daughter, etc, you're never going to come to an answer. So is that a thing you give away at some point, or do you still mull it over? I have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years, though, because we began using us Med, you can too us med.com/juice, box, or call 888-721-1514, to get your free benefits check us med has served over 1 million people living with diabetes since 1996 they carry everything you need, from CGM to insulin pumps and diabetes testing supplies and more. I'm talking about all the good ones, all your favorites, libre three, Dexcom, g7 and pumps like Omnipod five, Omnipod dash tandem and most recently, the eyelet pump from beta bionics, the stuff you're looking for, they have it at us. Med, 88887211514, or go to us. Med.com/juicebox, to get started now use my link to support the podcast. That's us, med.com/juice, box, or call 88872115140,

Erin 20:09
we definitely still mull it over. My, my husband's family is very Southern Baptist, and we, you know, we sit there and we say, you know that there's a plan. There's a plan. We don't know the plan, and we try to not mull over too much about it, but it's very hard. It is very hard, as a human, to just accept it. Just accept it, yeah, and knowing that this is going to affect her the rest of her life. You know, the future that I saw for her is not the future that I see for her now, you know, and that's frustrating,

Scott Benner 20:43
yeah, no, of course, we talked about this recently. First of all, I think, I think Baptist Jesus's plan is just for you to spend a lot of money on CGM and pumps and things like that. Over the years, they're like, you know, what'll keep them working? What if they had more bills get them going? But quite seriously, like we were talking recently, gosh, about this idea of a normal life. Like, because we talk so much about you can live a normal life with diabetes, which I fully believe, right? And I watch my daughter do it, but no one's living a normal life. Like, do you mean like, like, what would normal be exactly? Because I think when people say normal, they mean unencumbered, true. You know what I mean? Like, I get to go do the thing I want to do, and that happens without me being sad or upset or inconvenienced or anything else that I just wanted to live a normal life. I think that's how a lot of people think about that phrase. And you know, I'm not going to say obviously, like, Oh, if it wasn't diabetes, it would be something else, because you get diabetes and something else. So then I love the positivity of you can live a normal life with diabetes, because I do believe that. But you also can't argue the fact that it's not normal. You know what I mean, like, it's, it's modified normal, new normal. Call whatever you want, right? But so I think you can live unencumbered with diabetes, you know, if you understand some things, and you have some luck, and, you know, decent insurance and, like, etc, like, all the things that you would need to accomplish that. But I would never disagree with anybody who said, like, this isn't normal, or this isn't what I expected, and I'm upset by it, the next step, 100%

Erin 22:26
not what we expected, not what we wanted for her. We didn't want her to have that extra junk to deal with, right? Our thought is, as a female, my thought is, she better find a partner that's willing to step up, because it takes a lot, and I hope, you hope that somebody will do that for her. You know, when she gets to that stage in her life, you know, as for everything else, we want her to live very normally. We we keep everything very normally she is in all the sports that she was before. We've had to get extra help past our Endo, and we've listened to your podcast. I mean, every ounce of information that we could absorb to allow her to have everything as normal and as pre diabetes, diabetes, you know, yeah, everything as before pre flood. We'll call it kind of that extra little Yeah, pre flood, we have, you know, everything that is done prior to and we just tried to tell her, we tell her, you know, you have to just take care of BDS first. Always be these first, but the rest of the time, be normal. Yeah. We want her to be normal and enjoy her life like a normal 10 year old kid. And

Scott Benner 23:36
I think what that means is Don't wallow. Maybe, and wallow is a bad word because it makes it sound like you're doing it on purpose. But I don't mean it like that. I mean, don't stay in this part, which is really the Listen, it's a matter if you break up with your boyfriend when you're, you know, 16, or you lose a job when you're 35 or whatever, like life's gonna go poorly. A number of times, you can't stay in that spot, right? You have to keep moving forward. There are all these platitudes you could use to, like, make this idea, but you just can't stay here in this and just keep re adjudicating. This isn't fair. You know, also, I did enjoy your point about a partner. I don't even you said as a girl, and I wondered what you meant by that. But because, I kind of think, because I kind of think no matter what, but I also don't have the experience of having to date 17 boys before I find a decent one. But I think there are women like that too, like, I think you we mean like, find an emotionally mature, reasonable person who's giving of themselves and willing to shoulder another person's burden. Is that what you mean? Yeah,

Erin 24:45
and so I mean by as a girl is, for me, as as a woman, the world is very it may be I have a lot of rights and things like that, but I still, you know, I still need a husband or a partner that. Is stable that, you know, Will and can take care of me, because there's a lot of things that I can't do, you know, I think about if and when my husband becomes that age. He's much larger than me, so I'm going to struggle to help take care of him. So I need to find, I want her to find somebody that is able, body, mentally stable. You know that can physically and emotionally take care of her? Yeah? Because we won't always be here to do that for her. That's

Scott Benner 25:28
the That's what I was trying to get to. That's the feeling you're having, that I have to live forever now, feeling Yes, yep, yeah, she was

Erin 25:35
she we're not allowed to die before she is, because we will be taking care of her forever. We've already told her we'll just blow out the other side of the house and refurnish it for her and her husband, and they can live with us the rest of their life. Yes, that'd be lovely. We'll be taking your hair. We'll take care of her.

Scott Benner 25:51
Don't flush the toilet too much, though, because the plumbing is not great. Hey, the plumbing is good now it is. Yeah, sure, yeah, you're plumbing, and you're and your $15,000 home equity loan, I imagine that you have now it's nice to think about also, I think honest of you and and kind of you to say out loud, because I can hear in your voice, as you're talking, you don't want to say to people, I need help, because I'm a Woman like that's not your intention, but size is an issue at some points, and could be with help once people, I'm literally watching a family member go through this right now, where older people, you know, the husband deteriorated before the wife, and she just, she really can't manage what needs to be managed, and this

Erin 26:37
is something that she's going to have The rest of her life. And, you know, I It worries me. I want her to have somebody that will be able to take care of her, because I know I won't be able to, yeah, and I think that's all that I really am getting at. But

Scott Benner 26:51
yeah, I just can I take a slight, not a complete left turn, but just a slight left turn, because I'm interested in public. Do you feel more comfortable when your husband's with you? Yes, you do for personal safety reasons. Yes, okay. But do you consider yourself like a worrisome person? Like, oh my god, something bad is going to happen? Or no, it just feels like common sense.

Erin 27:13
I was not a worrisome person until my children all I want

Scott Benner 27:18
to do is protect it. Aaron, you broke up a little bit. You weren't a worrisome person before. Worrisome person before your children were born. Is

Erin 27:24
that what you said? Yes, okay. Um, not worrisome. And then when they were born, I just became a nervous wreck. And that's one of the things with Kylie's diabetes that I know that I just I worry about everything with

Scott Benner 27:37
her. Okay? Is that the mom thing that kicks in? Do you think, like, I gotta, I gotta keep everybody alive now, like, I hadn't never thought about that before they babies came flying out,

Erin 27:47
right? Yes, I think that's definitely that mom instinct kicking in, that, you know, I just this world is crazy, and I just, I want my children to be safe. And with that, that just comes in that anxiety and things like that. I know that if, if my husband's there, at least there's two set of eyes on, you know, our children, and it's not just me. And

Scott Benner 28:09
that feeling grew once the diabetes came, oh yes, to kind of incorporate that idea of, what if she gets low and we're not here, what if she can't afford something and we're not hear that kind of stuff. Yes, yeah. I think we all have that feeling, by the way.

Erin 28:25
Seriously, I looked at all of our stuff, and I, you know, I thankfully had some life insurance that I purchased for her when she was, like, two years old, yeah. And they told me they're like, do not ever let us not know that your bank account has changed. You know, like, the account numbers have changed because you don't want this to lapse, because now she can't ever get life insurance because she's diabetic,

Scott Benner 28:47
and that's something, yeah, I remember, listen, you know, I'm not planning the great takeover or anything like that, but we were saved. We're saving money as we're getting older, right? And when we spoke to somebody about how to manage it, they were like, well, what are your goals for the money? And we were like, We would like to leave it to our kids. And they were like, Yeah, but for you, and we're like, No, our daughter has type one diabetes, like, so we would like her to, I don't want to. I'll be dead. So I guess it wouldn't matter, but it would matter to her, and it would still matter to me, if I could see myself in that scenario. I don't want her to be 40 or 50 years old and like, ever have a moment where she's like, I can't afford insulin I can't get an insulin pump? I can't whatever things technology is going to look like down the road, and then the pressure of, if I leave her money, how do I not back to your original point about your son, like, how do I not leave an equal amount to my son? Like, is the last thing I want him to think after I'm gone is that he cared about her more than me. You know what

Erin 29:44
I mean? These things are always a thought in the back of your mind, and you're just like, oh my gosh, yeah, it's it's hard being a parent is what's best for them, and it's so hard.

Scott Benner 29:55
Aaron, without this diabetes, you could have ignored all these big life questions forever. You. Know,

Erin 30:00
and I could always just joke be like, Yeah, I don't like either of you guys.

Scott Benner 30:03
You guys suck. And, you know what, if you don't like the way that sounds, just, you know, get a good job, because you're gonna need therapy, and I'm not paying for it. And, like, and you could have just joked your way through it like everybody else does, and, you know, but instead, now it's like a real omni present, honest to God, issue in front of you. Yeah,

Erin 30:21
fun times. I wanted to tell you one other, it's been a little dark and gray for us for the last two years, and we feel like we're finally coming out. So I just wanted to tell you so, along with the diabetes, so she was diagnosed in October, then July of last year, she ended up having a appendicitis that was undiagnosed. Oh, so the abdominal pain, all of those issues were, you know, in hindsight, we're like, man, what is going on? But she ended up having an undiagnosed appendicitis. They couldn't figure it out. One of the surgeons came up to me, and they're like, I'm sorry. I let her diabetes mask a lot of these symptoms. Her appendix ruptured and she had to have emergency surgery. So she has a scar from the top of her belly button to the top of her pubic bone because they had to go get it. It was under her tailbone. Oh, my

Scott Benner 31:08
God, that's terrible luck for the kid. Yes, she's had

Unknown Speaker 31:13
really luck. Yeah, no

Erin 31:14
kidding. Jesus Christ. That's not even a lie. She has had these she has left in the last two years. So

Scott Benner 31:21
what do you think she if she could give one of those two things away? Do you think she'd say the diabetes or the scar in her belly?

Erin 31:26
I'm pretty sure she would rather get rid of the diabetes.

Scott Benner 31:29
Yeah, okay, let's just wonder. So wait, was this like an emergent thing? Were you like, Oh, she gonna die because you live near nothing? Yeah.

Erin 31:36
So we went in and we assumed, you know, hey, maybe this is appendicitis. You know, she was having pain, but once she starts growing up, we're like, Okay, this is our first diabetes protocol where we don't really know what we're doing. So we went and started getting fluids, and they're like, Uh huh. Just looks like she's having some inflamed lymph nodes. They sent us home. A couple hours later, she brought us right back to the hospital, and then they're like, Well, her, you know, blood sugar is off and she's having symptoms, but, you know, we think it's more of the diabetes. So they kept us for three days. They got her ketones back in order. We got her blood sugar back in order. She was still in pain, but they sent us home again. They said that, you know, those lymph nodes were inflamed. They called it like mesenteric adenitis, or something like that.

Scott Benner 32:25
And, and then we came back and they not spell. We can't figure this out. Is that what happened? Yeah, no, yeah. There was

Erin 32:31
no, you know, we don't know. Attitude. They were like, Yeah, you'll be fine. She'll grow into it. We're like, what she'll

Scott Benner 32:37
grow into, which she'll grow into the abdominal pain. It's

Erin 32:41
something that could be, you know, something she'll have until she's an adult. We're like, why? Boy, I'll tell you.

Scott Benner 32:46
Until I had a wife and then a daughter, I had no idea how quickly when people don't know what to say, when it's about a woman, they just go, that's a lady thing. You'll grow out of that, you know, once you I see, once you have a baby, a lot of that stops happening. Is that your medical opinion? Thank you. People are I'm not this person, like, but I do see this boy. It's easy to just say, oh, that's because you're a girl. You got girl parts, and then they just don't help after that. Like, PCOS is an example. Like, this is a real, serious problem, and the answer to it is bad luck on your part, I guess, yeah,

Erin 33:21
well, and I still feel that's how it is with the diabetes. It's like, nobody has a clue. I feel like I'm explaining the definition of type one diabetes to everybody that asks or come across, you know, yeah, comes across her. They'll ask me, how's your daughter? And they're like, does she has type one or type two? Again, tell me again. And I'm like,

Scott Benner 33:37
type one. And we said, we talked about, yeah, also to connect the two things together. It doesn't matter what your a 1c is. It doesn't matter if it's six or five or eight or nine. If you look like you're trying, a physician goes, You're doing great. You're doing great. So you tell a person with an eight and a half a 1c You're doing great. And for 20 years, they're like, I'm doing great, you know. And then they start having problems. They go, I don't understand. Doctor told me I was doing great my whole life. Oh, yeah, great for, you know, you or, you know, for the amount of effort I thought you could put into it, or the understanding I thought you had. But no one ever says, hey, it's an eight and a half. I love your effort here. You're doing great. But I bet you if we made a couple of tweaks here and there, maybe brought in a couple more ideas. What if we made this a seven, and then once we get the seven, what if we look into getting into the sixes and really try to eliminate the idea of long term complications for you? But no, just You're doing great. That's the end of it. By the way, plenty of doctors who do that stuff, but way too many who don't, is what I'm saying, yeah, yeah,

Erin 34:41
yeah. So she, like, I said, you know, undiagnosed. So she went and had her surgery, and that put her out for a while, you know, because it was major abdominal surgery, yeah. So at that point, she was like, everything in anything in my life has been bad for the last two years. And she's like, I. Want to do any sports. It's softball. Softball caused diabetes. Softball caused my appendicitis. I don't want to play softball anymore. I just and she kind of gave up for a minute, like she was like, over it. She was over everything. Because when we got back from all of that, after trying, you know, all those months, and we were doing really good, and then she had the appendicitis and surgery and then having to refigure out how to get her blood sugars under control again. She was just like, I just, I don't want to. And we're like, you don't want to. She's like, No. We're like, but you like, this girl can't sit still. Yeah. Like, what are you going to do? We finally, we actually found a gentleman in Canada that has diabetes that has kind of, I mean, we are paying him, but he has been pretty much a mentor for her, and been helping us as well, because we wanted her to be active and we wanted her to be busy, and between all the negative that she's had, we wanted her to be positive about stuff, and she finally agreed to play softball again. Now we've we're over our head. So I think we're on, like, tournament number four for she's

Scott Benner 36:06
back on to the softball. Didn't give her appendicitis?

Erin 36:10
Yeah, yep, she's back on. It's fine. Life is fine. I don't understand.

Scott Benner 36:13
What's the magic? What's the magic Canadian that you're working with? What does he like? Like, hook her up to a sled and tell her to pull it, and then it's like, see you can do it like, because I don't understand why they're Canadian and what they're doing. I'm confused, right? Okay,

Erin 36:27
so, like I said, we want her to enjoy life as much as normal as possible, right? So we decided, as parents, we have exhausted, you know, the endo the diabetic educators, we've listened to your podcast. We've done everything that we possibly could on our side as parents. So we had found this guy that could mentor her. He's been type one since he was 11, and he's a bodybuilder, and he had talked about personal training, helping people out, and I spoke to him, and what he's pretty much done for us is give us other ideas, other things, to help us focus her diabetes. He's like, you know, because she's so active, our diabetic educators, we bounce back and forth with so many things. Nothing ever gets explained. We struggle, you know, we've had these weird drops during softball that we can't get an answer for. So we reached out to somebody that

Scott Benner 37:28
it's active insulin. By the way, it's active insulin, if she's dropping during softball, I would imagine, yes, yes. We

Erin 37:34
found out. Yeah. Thanks. You know, to everything. He helped explain it. I guess. Are

Scott Benner 37:38
you telling me that your 10 year old has a Canadian life coach.

Erin 37:42
Yes. Oh, okay, yes, very much. So that is exactly what it is. I see she has a coach. And when we have questions that are just, you know, like, hey, what do you think about this? He's like, Well, you know, sounds like she's just very insulin sensitive. Let's, you know, test this out. Let's see what other things we can do to help, you know, make this

Scott Benner 38:02
I didn't know this was the thing. Can I be a life coach?

Erin 38:06
Well, if you have information, I'm assuming so I think you're life coaching, just in a broader spectrum already. Yeah,

Scott Benner 38:11
I might be doing it already. You might be right. But huh? I mean, after I'm done with the podcast, I mean, like, can I be or actually, could we just turn it into a pot? Or have I already turned it into a pot? Oh, it's hard to know. This is such a meta moment for me.

Erin 38:25
Yeah, but no, I mean, it is true. She, she literally does. She has a life coach that is diabetic, that is a, you know, body building pro carb, you know, all the things that you talk about. But he is MDI, and he takes for a long time, nice.

Scott Benner 38:40
I should take PayPal. Okay, no, hold on a second. This is very cool. I don't know how you found this, and I don't promote coaching, like, through my stuff. So, like, just because I can never know who's the good one and who's the bad one, or I would just ask you the person's name. But anyway, like, you know, listen, if this sounds exciting to you, just just Google Canadian yoked diabetes life coach. I'm sure you'll find the person, but, yeah, I just tumbled down a rabbit hole in my own mind. I was like, Huh? You know, people in my own life, people come to me all the time, they have since I was younger, and they're like, here are my problems. What do you think? And then I'd be like, Oh, I would do this and this, like, I can't remember one of my earliest life coaching moments. I guess I was probably like, 20, and this younger kid, like 17, this is gonna sound crazy to people, but ATM machines had just started becoming a thing. So depending on where you live in the world, Mac machines, ATMs. But you know, money access, where you can go stick a card in a wall and money flies out of it. I know you're all like, yeah, we know what that is. But I'm trying to tell you that I once lived in a world where that didn't exist. So you're even like, holy, how old are you? But when they came out, people had problems with they were taking too much money out of the bank, like it was almost like a compulsive thing. And this young kid, like 17 or 18, he worked at a place where my girlfriend. Worked. I was picking her up one night, and he was complaining to people that he's like, he's wasting all of his money. He's going broke. I turned to him and I said, what's happening? He goes, Oh, you know, like, you see something for a couple bucks. And I go to the ATM and I get $5 out. And then before I know what I'm doing, again and again and again. And I said, Oh, okay. I said, How much is a lot of money to you? And he said $20 and I said, Okay, only ever take out $20 from the ATM. And he's like, but then I'll, I'll use more money. And I was like, No, you won't. You'll go to the ATM less frequently because it'll, it'll stop you. And, like, a couple months later, he came back to me, and he was like, Hey, man, I've been saving all kinds of money because I took your advice about the ATM thing. And I was like, Cool. Like, I didn't really care. I was like, whatever. Like, I just love talking. And I was like, yeah, it's great, man. But then I realized I started looking at it. People come to me with their like, you know, dating issues or about they want to talk about money, they want to talk about the world. And they were always asking me what I thought. And so just now I thought, Oh, maybe I could do that as a retirement thing. That sounds great. Like, I can make some extra money. You extra money, you know, being somebody's Canadian, like, friend, and I'll pretend to be in Canada. I'll hang up like a maple leaf behind me or something. Because Canadians are people think they're nicer. So I think it'll go over bigger. And I'll go a and, oh yeah once in a while, but, but then I realized, I'm like, oh my god, maybe that's what the podcast is

Erin 41:21
it? I mean, honestly, you, you probably are, like I said, just in a broader spectrum. Jesus and this gentleman. I mean, he really, I guess you can call him a life coach, but it's like, once you've exhausted,

Scott Benner 41:30
where else are you going to go when you're out of ideas? Yeah, and I feel like our Endo,

Erin 41:35
our diabetic educators, we're at a loss, we're at an impasse. We just they give us what we need for, you know, prescriptions and paperwork and things like that, but for the day to day lifestyle that my daughter is doing and what we want her to continue doing, we needed more information. Okay, so we found somebody that could live that lifestyle and is, you know, is helping her. Oh, I'm seriously

Scott Benner 42:01
good for you for looking positive and not just sitting around going, Oh, woe is me. This sucks. Like, what are we going to do? I'm out of ideas. Oh, well, let's all just jump in the river, you know. Or, yeah, we're

Erin 42:10
all a little tired of, you know, being sucky. We want life to be a little bit better. We're tired of, you know, the roller coaster. So we want to be more positive. And if we can't find the information here, we started looking elsewhere. You know,

Scott Benner 42:25
I tell people all the time, like, listen, I think the information about management stuff is in the podcast. But if you're a person who doesn't learn by listening, or just can't put two and two together while it's happening, like, I get that too. It's not for everybody. You know what I mean? Like, I think I'm comfortable saying that the way I present it seems to work for a lot of people, but it's certainly not going to work for everyone. And also, I might say something that you're just like, yeah, I agreed with that part, but not with that part. I think that's great too. Like, take the information a la carte. And I love that you went to a whole bunch of different sources and pulled together what you needed. That's fantastic. You know, way not to give up. But really, I'm being serious. Like, that's wonderful,

Erin 43:04
yeah, like I said, I we listened religiously to your podcast. It came up in you know, conversation, hey, try this, you know, try this person. Listen to this podcast. You know, see what you think. But it's like, I'm not gonna lie. Start Talking ratios, things like that, my eyes glass over. And I'm like, I hate math.

Scott Benner 43:26
I hear you so, yeah,

Erin 43:27
trying to, you know, relate that and figure that out. But I think, again, like you said, I think a life coach is probably the correct terminology for him, because, yeah, I mean, that's what he's doing. And he speaks to her on Zoom, he we have a weekly call with him, and he asks her, you know, what kind of questions she has, and we try to get as much information of you know, what he's done or what he's tried to, you know, combat these situations that I my brain cannot pull that information. And I'm like, I know I heard about that once upon a time, but I can't find that information. I just want

Scott Benner 44:01
you to be careful, because eight years from now, I don't want her coming to you saying, Mom, I've fallen in love with a 40 year old Canadian life coach, and I'm going to the great white north. Okay, very careful. I'm teasing. But although, if he can take care of her, I guess you're, you're, you're like, well, there's a lot of the only he was if only this guy was 10, knew all this stuff and could grow up with her. This sounds like a really great match, right? Oh, my god, wow. What a out of the box with how did you come up with that idea

Erin 44:29
to find somebody? Yeah? Well, social media, I guess technically, social media just randomly. You know what? I love, our phones. Once you start Googling, searching, one thing you know, populates all this other information. And social media popped up all these different people that were talking about diabetes and the information that he had coincided with a lot of what you had talked about, and the fact that he was MDI and ball overlap, managing it overlapped. And, yeah, yeah. And that. Why we reached out to him, and he had posted like, Hey, I'm taking on clients. I'm, you know, trying to help them. You know, it's very cool. Better themselves physically. I have the,

Scott Benner 45:09
I mean, it's a rule, I guess, that of how I manage some of this stuff, like, whether it's in the Facebook group or here, I don't promote health coaches because I don't have the time or the inclination to figure out which ones are good and which ones aren't, and I don't want to be the reason you go give somebody 1000s of dollars and then they're like, uh, I got ripped off. You know what I mean? Which I think sometimes people take as, oh, you're just saying that health coaches are all like a rip off. I'm not saying that at all. I'm sure there are great ones, and it sounds like you may have found one. I have a pretty big responsibility, like a lot of people hear my voice, right? So I try to be aware of that, and I don't have the infrastructure to set out and figure out which one of these are great and which one of them aren't. And I don't, and to be perfectly honest, I don't want you having a bad experience and blaming me. So you know what I mean, like, so I just don't do it. But then what happens is, like, a half a dozen times a year I get yelled at by a health coach. I'm not hurting anybody. I'm like, didn't say you are just saying we have a flat rule where we can't, you can't be a health coach and be a member of the of the group. I'm sorry, yeah, you know well, and

Erin 46:18
I feel like now that we're two years into it. I'm glad that we didn't start off with health coach, because it gave us time to figure her out, figure things out ourselves. It was just, you know, now we're to the point where we understand the best of our ability at this point. Yeah, we're only getting so much information from these other sources. What other sources can we pull or, or, you know, or her. And as parents, it's like, well, if it costs me money, I'm gonna still find somebody that's gonna help her. And if it helps her, great,

Scott Benner 46:50
cool. Can I ask you what it cost? Would you tell me if I asked you what it cost? I'm trying to think what it cost. I'm trying to think I'm so interested if you're gonna be embarrassed, or if you're just gonna tell if you're gonna be like, Oh,

Erin 47:02
actually, I'm not. Embarrassed at all. Like I said, you know, as a parent, I'm like, I would pay for what we're everything that I owned, yeah, to find anything to help her. So I think I want to say we're doing four months and it's like, $800

Scott Benner 47:16
Okay, I want everyone listening to send me $800 right now. Okay, that's it. Of advice, yeah, and just figure out where I am or whatever. Send me $800 and we'll all call it even, okay, and that'll be that I just, I have to tell you something. Aaron, if everyone sent me $800 right now, I'd be wealthy. That's what I'm looking for. I'm just, please don't send me money. I'm just joking. I want to make sure you're done asking everything you've asked, saying everything you want to say, because I have a question that's outside of our conversation that I want to record. So I don't want to run out of time and you have to go help people help make sure you've said everything, or is there anything left? Yeah,

Erin 47:53
yeah, no. Like I said, I we have been in a very dark two years, and with my daughter, we are finally feeling that things are getting much better. And you know, the time frame of this phone call just worked out really well, you know, because when I first set up this call, no, we did not have our Canadian life coach at that point in time, and it was post surgery, so I was in a very dark, mad, upset place, you know, damn diabetes, damn appendicitis. You know, life is just kind of key, to be honest. I'm very positive right now. I'm very happy she's thriving. And that's that's the most important thing as a parent, is having her thrive. I like the quick turnaround. Having a life coach for her has been great. It's been helpful for us. And all the information that we've gathered from you, it really does help. Yeah, but to be positive, seriously,

Scott Benner 48:45
very cool that you figured something out and that you went from like, where you were when six months ago. You're like, I want to be on this podcast, because everything sucks, and I gotta tell people, everything's fucks. And now you're like, hey, everything doesn't suck as much. And I think you know, you'll hear me tell people all the time that, um, things get better much more quickly than you imagine. And like, you know, in this moment around diagnosis, or while you're trapped in those feelings, you think, this is the rest of my life, and all these things you describe about how your son feels and how your daughter feels, and what happened to softball. And, you know, why is this happening? You think, oh, this is how I'm gonna feel forever, but it's just not true. Like you. I always tell people, a year from now, you're gonna look back and think I don't even recognize myself anymore. And you you got to that, so that's very cool. Yeah. Thank you. Really. Excellent. So now here's my question, you work in a dental office? I do. You don't have to say, where do you clean teeth? Or are you an assistant, or are you a dentist? I'm a dental hygienist, so I clean teeth perfect. I'm going to ask you a question, and you answer me honestly, if you can. Okay, is it a scam when you clean my teeth? Because here's what it feels like happens. It feels like you take a spear and you jam it down between my tooth and my gum line, and you go, Oh, bleed. Saying you're going to need trays, because everyone thinks, yeah, what's bleeding? Because you just poke me with a needle. And then they say things like, there's a gap here. This one's a three, this one's a two. We don't we just don't want any fives. Oh, there's a bleeder, but it's a four. But you're saying that while you're poking me with a sharp piece of metal, are you just trying to are you trying to steal my money and get a deep cleaning because the insurance doesn't pay for it? You want a little cash? Go ahead and tell me the truth. That's

Erin 50:27
hilarious. So to be honest, I am not that kind of hygienist. I I don't like to diagnose that way, but to tell you the truth, the little probe that we use is blunted, so it's not sharp, it's not a spear. So if you are bleeding, that means that you do have inflammation underneath your gum line. And I tell people, think of it like an ulcer. It's fine until you start touching it or rubbing it, and that's when it bleeds. So it's incognito until I start rubbing on it, is technically what I do. I love that

Scott Benner 50:56
you said rubbing on it. That was very creepy, parents like until I start rubbing on your mouth, and then you'll know what's going on. Yeah, yeah. No, wait, wait, wait, wait, hold on. There's people have a lot of questions here. I was just talking about this with the editor the other day. He's listening to it now, going, oh my god, we did talk about that months ago. That's hilarious. What about the trait like, what? Or hold on, what is the inflammation a sign of besides inflammation, is it a sign of anything else? So it's just

Erin 51:21
a sign that you have pretty much a bacterial overgrowth underneath your gum line, and that it causes infection, and that infection causes bleeding. So bleeding is an indicator of infection or irritation. And is

Scott Benner 51:33
that going to kill me? Because they make it sound like I'm gonna have a heart attack because of it. So just

Erin 51:37
like you talk about with diabetes, it's not gonna kill you tomorrow, but long term, you will have complications. Yes,

Scott Benner 51:44
I'm gonna die because I have a four pocket in my tooth by my molar. I got you now, and brushing doesn't help. It does flossing, flossing,

Erin 51:53
water, picking, yes, that's about the only thing. And getting your teeth cleaned is the only thing that gets that bacteria out

Scott Benner 51:59
of there. Okay? And what about when they charge me a million dollars to make a mold in my mouth and, say, squirt some gel in this and then stick it in and hold it in there for 10 minutes and use your trays or whatever? Is that a thing you sell, or is that a scam?

Erin 52:13
I personally don't do those. I've heard about them, so I couldn't tell you exactly when it comes to that. But I hate to tell you, dentistry is a business too, and everything is expensive.

Scott Benner 52:25
I don't mind it being expensive, if it helps me. I don't want to have a heart attack. But like I'm saying, are the trays like, are they snake oil? Or do you think they really do something? I

Erin 52:34
think they use peroxide in them, and peroxide helps to oxidize the bacteria. And in that aspect, it does help.

Scott Benner 52:42
I don't love your answer. Okay? I feel like if I stop this recording, you're going to be like, Scott, go get your money back for those trays. Break the front window if you have to. They owe you, but I don't, but I feel like you don't want to say it now. So the real answer is, I mean, I want to be clear. I do brush my teeth, but Brush, brush, floss and water. Pick, like, I should jam like, down the side with some like, when I get the deep clean, do the deep cleaning with the water. Do you do that? I do,

Erin 53:09
but just a water pick, like, the ones that you see at the store that just are, that stream of water flushing that underneath there brings that oxygen into those pockets. And with the oxygen in the pockets, it helps decrease those bacteria. Got

Scott Benner 53:21
it my last question, because you do have to go help somebody right now at work, why do dental hygienists talk to me while they're in my mouth?

Erin 53:29
Because you're a captive audience, and we don't have anybody else to talk to, and because we say everything exact same all the time, like it feels like scripted. I tell everybody to floss. I tell everybody to brush. I tell them kind of nice to have somebody that doesn't talk back to you. You just talk to

Scott Benner 53:45
them so you're not expecting me to reply.

Erin 53:47
No, no. It's a direct like, are you flossing? And then wait for my fingers to leave your mouth, and then please reply. But if I'm just telling you about my kid or something like that, a little, you know, I little eye contact or a little head nod, works just fine. Okay, okay. All

Scott Benner 54:04
right, they're listening to me. I feel a lot of pressure in that situation. I'm like, this is a deep question. I have answers. Hold on a second. Oh, that's why I'm in there. So long. All right, I'm just gonna shut up next time. Okay, Aaron, thank you. Go clean someone's teeth. All

Erin 54:16
right, Scott, thank you so much. Take care. Have a good day. You too. Bye. You this

Scott Benner 54:20
episode of the juice box podcast was sponsored by us Med, us, med.com/juice, box, or call, 888-721-1514, get started today with us. Med links in the show notes, links at Juicebox Podcast com. Today's episode was sponsored by Medtronic diabetes, and Earlier you heard from Maddie, who shared with us what finding Medtronic meant for her. Learn more about hyperglycemia at Medtronic diabetes.com/hyper. Hey, you listened all the way to the end. You might want to know more about the Juicebox Podcast. If you do, go to Juicebox podcast.com scroll down to the bottom and subscribe to the Juicebox Podcast newsletter. Each week. You'll get a rundown of the shows from the past week, just in case you missed something and you think, Oh, I would have loved that. Now I know if you're ready to level up your diabetes care, the diabetes Pro Tip series from the Juicebox. Podcast focuses on simple strategies for living well with type one. The Pro Tip episodes contain easy to understand concepts that will increase your knowledge of how insulin works and so much more, my daughter has had an A, 1c, between five, two and six, four, since 2014 with zero diet restrictions, and some of those years include her in college. This information works for children, adults and for the newly diagnosed and for those who have been struggling for years, go to Juicebox podcast.com and click on diabetes pro tip in the menu, or head over to Episode 1000 of the Juicebox Podcast to get started today with the episode newly diagnosed, we're starting over and then continue right on to Episode 1025 that's the entire Pro Tip series. Episode 1000 to 1025 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 it. You want rob you.

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#1413 Low Dose Naltrexone

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Liz shares her family's autoimmune journey and how low-dose naltrexone helped. She highlights overlooked links between thyroid, insulin resistance, and autoimmunity.

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

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

want to jump right into this one, but Liz is back. She's a returning guest, and today we're going to talk about a lot of stuff, but mainly we talk about how she's using low dose Naltrexone. Now, you either heard that and thought, Ooh, interesting. I can't wait, or I don't know what that is. Either way, hang out for a second. It'll all become clear. Nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan, don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com 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, 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. Today's podcast is sponsored by us Med, US med.com/juicebox you can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom, libre, Omnipod, tandem, and so much more us. Med.com/juice box, or call 888-721-1514, this episode of the juice box podcast is sponsored by the ever since 365 that's a CGM that lasts a full year, ever since cgm.com/juicebox one year one CGM Liz has been on the podcast in the past. She was in an episode called blackberries to the rescue. Blackberries to the rescue. You should go check it out. It's a very interesting conversation that culminates with a story of her husband and son, both type ones out on a hike. The low snacks got used up on the sun. The husband gets super low, saves his life with berries on the uh, it's a great story. You should go listen to it. But Liz comes back today because A lot's happened in her family over the last couple of how long would you say,

Liz 2:39
um, I'd say just Yeah, the last year, year, yeah. So we have, we have four kids, and my oldest is the one with all the all the medical stuff. So he has type one. He was diagnosed when he was 12 months old, and then a couple months later he was diagnosed with severe food allergies. And when he was about eight or nine, he was diagnosed with what I now know as Hashimotos. At the time, I just thought it was hypothyroidism, yeah, so the reason why I wanted to come on was mainly the thyroid and autoimmune stuff that we had pop up in our family this last year. So I'll start with my daughter. So she was 12 at the time last year, and she normally loves school. She's a great student, and she started just missing so much school and getting really tired. Sometimes it was like her head was hurting, sometimes her stomach, sometimes her joints, just extreme tiredness. So she missed a lot of school, and I took her to a walk in doctor and asked just for auto immune screening, because we have a lot in our family, and it came back that she has Hashimotos that sort of started me on, I guess, a deep dive of researching Hashimotos and thyroid. And I knew, since her TSH was was optimal. I knew that it could be years, and maybe, you know, maybe she won't ever need it. Hopefully, that's the case, but I knew that she wasn't going to be treated by a doctor for her symptoms, or even acknowledge that the symptoms that she was having were related to thyroid. So anyway, so I just started researching at the same time my son, who was 17 at the time in October, his TSH was also optimal, but his endocrinologist wanted to lower his dose because he lost some weight. I reluctantly agreed, because he already was sort of symptomatic even at that optimal dose, but he's kind of always been like that, so they lowered his dose, and when we retested it, the educator said the doctor's happy with the number. There's no need to change the dose. And I asked what it was, and it was had gone from point four originally, and it had gone jumped up to 4.7 Or something at the at the high end of the range, which is not optimal, and he was also feeling more symptomatic. So I had to basically beg her to adjust the dose. And I asked her, if she wasn't willing to go back up in a dose, could we just alternate? She said to me, there's absolutely no medical reason. And I want to stress this to you, there's no medical reason to adjust his meds, because if he's feeling anything, it's not related to his thyroid, because he's in range. And she said, it'll make you feel better. We can alternate the doses and try that. So how

Scott Benner 5:39
did that make you feel that they said there's no reason to have this medication, but that you continue to ask. And then they were like, Okay, fine, you can have it. Then, yeah,

Liz 5:48
you know, I just, I feel like she was like, anything to just make this intense woman get off my back. Isn't

Scott Benner 5:56
it strange, though, because too much thyroid medication is also bad. So if the doctor really believed that it was going to be too much, this is my assertion.

Liz 6:05
Yeah, she should. She she could have just flat or refused, but, you know, I'm

Scott Benner 6:10
saying she wouldn't have given it to you if she thought it was going to cause a problem. So she, I think what that story tells you is she didn't know either, and then she tried to put it on you, right? I believe the kids call this gas lighting. Am I right? Do I understand gas lighting correctly? Yeah, that's what she does, right? She puts it on you. There's no way she doesn't think, Huh, that might be what's going on here, but I don't want to put my name on it. We'll let the mom take the responsibility. I think it's shitty, is all I'm saying. So, yeah,

Liz 6:41
it felt, it felt. It felt pretty shitty, actually. Okay, yeah. So anyway, we, you know, I, I was very even though I wanted to put him back on his original dose. I was like, if I do that, you know, the blood tests will be different. So I was very faithful. I alternated the doses, and then I got a phone call from her with the next check and his TSH had jumped up to seven something. And she said, Okay, at this point, even though I still he's probably not feeling symptomatic at this point, but we will go back to his original dose. And so we went back to his original dose, which was still, you know, likely not enough at that point, because he was also growing and still feeling worse and worse and worse. And at the next the next blood test, he had jumped up to 31 his TSH, this all spanned from October to me, you know, this is his grade 11 year, and ended up missing so much school, and there was other stuff going on as well. It wasn't, I can't say it was all his thyroid, because he also, we found out that he had other allergies that were undiagnosed because he was having reactions as well. So, you know, he was having severe gastric upset. And some of the times he was missing school, it was because he just couldn't drag himself out of bed, probably because of his thyroid. And then other days it was, you know, because of allergy stuff. And while this was all happening as well, I came across an article that said

Scott Benner 8:17
this episode of The Juicebox Podcast is sponsored by the ever since 365 get 365 days of comfortable wear without having to change a sensor. When you think of a continuous glucose monitor, you think of a CGM that lasts 10 or 14 days. But the ever since 365 it lives up to its name, lasting 365 days. That's one year without having to change your CGM with the ever since 365 you can count on comfort and consistency. 365 days a year, because the ever since silicon based adhesive is designed for your skin to be gentle and to allow you to take the transmitter on and off to enjoy your shower, a trip to the pool or an activity where you don't want your CGM on your body, if you're looking for comfort, accuracy, and a one year where you are looking for ever since 365 go to Eversense cgm.com/juicebox to learn more. You've probably heard me talk about us Med and how simple it is to reorder with us med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up to be called if I don't respond to the email, because I don't trust myself 100% so one time I didn't respond to the email, and the phone rings the house. It's like, ring. You know how it works. And I picked it up. I was like, hello, and it was just the recording was like, US med doesn't actually sound like that, but you know what I'm saying. It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it? Push this button if you want us to send it. Or. Or if you'd like to wait, I think it lets you put it off, like a couple of weeks, or push this button for that, that's pretty much it. I push the button to send it and a few days later, box right at my door. That's it. Us. Med.com/juice, box, or call 888-721-1514, get your free benefits checked now and get started with us. Med, Dexcom, Omnipod, tandem freestyle, they've got all your favorites, even that new eyelet pump. Check them out now at usmed.com/juice box, or by calling 888-721-1514, there are links in the show notes of your podcast player and links at Juicebox Podcast com, to us Med and all of the sponsors. If you

Liz 10:43
are allergic to grass and you have asthma, which he is both, there's a chance that you could be reacting to one of the filler ingredients in your thyroid meds, and which is, it's a case, yeah, it's from this tree, you know, like the tree doesn't grow anywhere near us, so it's not like he would be reacting to the pollen, but it's, you know, it's related to the grass stuff, you know. So I knew it was a long shot, but I was like, I know he's allergic to something. Like, there's something happening that I should be able to figure out, and he's suffering, and I can't figure it out, right? So I think this was before we knew his TSH was 31 so at this point, the endos thinking he's seven, probably going down. He's probably, you know, he's probably fine, thought, right? Wise. Anyway, so I wrote her an email saying, think there's a chance. I said, chance. Like, I'm like, I'm not positive, right? But I was like, if there's any, if there's any possibility, I I would love for him to try a different Med, that there's so few meds that he can try in Canada here, like, we don't have that the tears sent up here yet. And so it was like, maybe we could go to a compounding pharmacy, you know, get it without the fillers, just, you know, and I will have the allergist test for it. And I realize it's a long shot, but you know, what the heck there's a chance, right? You know. Keep in mind,

Scott Benner 12:00
you're talking about eight months this has been going on for him. Yeah,

Liz 12:03
yeah, she was, you know, she contained her

Scott Benner 12:07
disdain for you.

Liz 12:10
And so she's like, Okay, I highly doubt it. I highly doubt it. But if, if you want, we can, we can go that route. And by the time I, you know, heard back from her, he did have an appointment at the allergist a week later. So it was like, okay, you know that we'll see what's happening. But I did feel that, you know, I was being, you know, she in her mind, she thought I was crazy, because she already, you know, she kept on saying, whenever I bring up the word optimal for thyroid, she's like, well, we have very different ideas of optimal, and there's no reason to think that anything, any symptoms he has. It's not really, oh. And then at the same time, I had been asking to know if, if he in fact had Hashimotos, because I was like, has, could we get his antibodies tested? Because I'd like to know. I think it's good for him to know if he does in fact have Hashimotos or just right hypothyroidism. And you know, chances are. And to their credit, you know, she's like, we don't need to test antibodies. There's no reason to test antibodies, and we're not going to

Scott Benner 13:07
because what's the reason against testing for them? Well, I think it's

Liz 13:10
a money thing. Like, I did find out she I wanted her phone calls, she she called back, and she's like, I did look again in his chart, because she'd said she'd already looked in his chart and he'd never been tested. And then she said, I looked again, and when he in 2012 when he was diagnosed with leading thyroid meds, his antibodies were tested at that time, and it does show that he has Hashimotos.

Scott Benner 13:33
Yeah, I would have said, why was it necessary then, but not now? Like, I feel like you just make things up when you're talking to me, is what I would probably have said. But okay, good. I

Liz 13:43
feel like what it is is that, you know, the government has mandated that they don't test antibodies because it saves money, and then they have to come up with the reason to defend that. Otherwise, if they told their patients that are asking for it, we really think that would be a great idea to test for them, but we can't, I don't know. Like, I'm trying to reconcile why they why they said all this stuff. By

Scott Benner 14:05
the way, I don't mind that there are financial reasons to do things and not do things. I mind the lying. I mind the making things up, because then you, you cling to those reasons like you don't mean like the doctor said. So down the road, you might use that as a reason to justify something else, when the truth is, it feels like they're just saying whatever shuts you up. Yeah.

Liz 14:30
And I said, you know, I said to her, I was like, I feel like it's his, his medical knowledge, like he has a right to know, you know, if, if he has this or not. Because, what if, no, what if, when?

Scott Benner 14:41
What if it has other impacts on other things too, exactly

Liz 14:43
like, what if he has other if he has kids, and he needs to know, look, I have this autoimmune disease, this autoimmune disease, you're going to be more like, you know, I feel like it's his, his information that he should be privy to In the meanwhile, like I had found all these research medical journals. Yes, that states if you have auto immune thyroid disease, even if you're in range, like before you even start taking meds, you are much more symptom, like you have an increased it's not in your head. Basically, what you're like what they're saying. You know,

Scott Benner 15:16
that's why we always tell people we by the way, I'm a guy that makes a podcast. I barely got out of high school, but nevertheless, it's why I'm always saying to people like, treat the symptoms, not the test result, right? If you have Hashimotos and you feel a certain way, and that's a symptom of Hashimotos, but your TSH, the doctor goes, well, the TSH is okay, I still feel this way. What do you care what the test says? Ridiculous. Yeah,

Liz 15:40
and my, my daughter for a perfect example. So her TSH is optimal and perfect. She doesn't need meds yet. Her, you know, her free t4 is good, her t3 is good. They don't do reflex. They don't do reverse t3 up here. So I have no idea what the conversion is. It's not even an option for the endocrinologist to check off, but yeah, so she was feeling so symptomatic and and my husband also, I mentioned earlier, when we weren't recording that my husband, when he he found out that my daughter has Hashimotos, he also has type one, so he thought, well, maybe I should test myself to see if I have it. And he has Hashimotos as well. So he's in the same boat as my daughter, in that his TSH, right now is good? Yeah. So neither of them, you know, they might not leave meds for years, right? So what I was doing, you know, that whole year, so I was researching a lot on Hashimotos, and what I can do is there anything that they could take my daughter and my husband to help their symptoms while they're in this sort of limbo state where they don't need thyroid meds yet, but they are, it's not in their head. I can see what's happening. You know, my daughter's hair is falling out and, you know, she can barely move some days because her joints are hurting so badly. And I can't remember where I came across it, if it was on one of the Hashimotos groups, or I also belong to a Ehlers Danlos group, because I think some of my kids have that and so it might have. I don't know where I found it, but I came across this drug called low dose Naltrexone. In my mind, it seemed like the perfect answer for both of them, and then me as well, because I have, I was just diagnosed with fibromyalgia last year, so I have a lot of chronic joint pain and everything. So low dose naltrexone, at its normal dose, is used for opioid and alcohol addiction. And so it's a opioid antagonist, I guess. And so it just blocks the blocks the effects of narcotics. They found out that if you take it at a very, very low dose, like, you know, 0.5 milligrams, up to 4.5 instead of the typical 50 milligrams, that what it does is it lowers body inflammation, and it for a very brief time, like maybe an hour. So it it locks the endorphins to your brain, and then your brain realizes, hey, I don't have any endorphins. I better make more. And then it makes, it sort of spits out extra endorphins. And somehow, the mechanism with these extra endorphins is it lowers pain, lowers inflammation, which is not going to cure your autoimmune disease, but it potentially could help you from picking up another autoimmune disease, because it's putting your body in a state of, I don't know, so just, I guess helping with inflammation. You know, it seemed like a very low risk thing to try. There's, there's very few side effects. The main complaint is sometimes people get vivid dreams from it. You start off very slow, and you titrate up the dose, but then if you decide that you it doesn't work for you and you don't want to take it, there's no tape. You don't have to taper down. You can just stop. And there's no side effects from stopping. Yeah, there's no side effects, and there's no addiction to it anyway, it just seemed like the answer.

Scott Benner 18:59
So Okay, who did you start with? Like, because you, you probably should have gotten, like, a candy jar full of it and giving it to everybody. But where did

Liz 19:07
you start? I originally asked my doctor for me, and she said, No, I do have some patients on it, but before I start you on it, I would want to try these other options. And so she, she wanted me to try deloxetine, which forget the other name for it, but it's basically, it's a pretty hardcore pain med, okay? And researching that, I talked to so many people that had been on it, and they were like, run the other direction. I'm sure it does help some people, but it seemed like a scary option to try, because a lot of people, you know, they were, they were saying, you know, I was on it for one month, and then I decided I didn't want to. It wasn't for me. There were too many side effects, and it took me two years to get off of it. And I was opening up the capsules, counting out the beads, trying to

Scott Benner 19:54
wean myself, you know, what's it? Called myself off. And I delox,

Liz 19:57
the team d i. U L,

Scott Benner 20:00
I'll figure it out. Is it Cymbalta? Yes, yeah, it's Cymbalta. Okay.

Liz 20:06
Meanwhile, I had booked through one of our it was our local diabetes Facebook groups. I was sort of venting about all the thyroid nonsense that was happening with my son and and daughter, and at the same time knowing that if things got worse for my daughter, she was going to end up at the same clinic that my son went to, which, you know, they're great for many, many things, but I knew that thyroid wasn't one, yeah, yeah. So what can I do to help her in the meantime? So somebody on the group had commented clinic that I work for, and there's a really wonderful nurse practitioner that is great with thyroid. She's helping me with my thyroid. And so I booked, I booked all three of them in with her, and before I could even bring it up, like I had all these like arguments. Why I thought this was the best option for them. This is like, I'm ready. I was ready to go on fighting. I'm ready. She actually brought it up. She's like, well, there's one thing that we could try to help lower their symptoms. And she, she brought it up. So that's how we got it prescribed

Scott Benner 21:12
for them. So long did it take for you to notice it helping them? My

Liz 21:15
daughter was, I should have kept a journal, but I, I feel like it was like, within the first increase in dose, like, maybe not, maybe nothing, the first week or so, but definitely within the first month, I'd say, couple weeks. So

Scott Benner 21:29
what did you start her on? Like, a starter dose? How long did that go for? When did you ramp it up? Was this on the doctor's orders? It

Liz 21:36
goes through a compounding pharmacy. So because they they have to take the 50 milligram pill, and then, you know, put it in a capsule. And so we started on 0.5 it was like, every two weeks we would go up, up in dose. Okay, so it was like 0.5 to one, and then, you know, so it took a while to go up. I think she started my husband on 1.5 and six weeks, he was up to 4.5 so, so he went up quicker. She just wanted to go slower with my daughter, but yeah, so she was, she was taking anti inflammatories every day. You know, she was taking Advil every day because she was in so much pain with her joints. And she basically just, she stopped eating Advil, and she it helped her with her energy, you know, she was able to get back to school. And I feel like she's, she's not what she was before this all happened, you know, like she doesn't. She sometimes needs a little bit more, I guess, repair time after a big weekend. Or, you know, I was mentioning to you earlier that she does cheer, and before she was on this if she would do a cheer practice, I feel like it would take her the whole weekend to to get better or to get her energy back, you know. So any

Scott Benner 22:48
other impacts? So what? What stick with your daughter for a second? What impacts Did it have for her?

Liz 22:55
I think it helps her well, for sure, her her overall body pain. It's helped a little bit with her energy. And do

Scott Benner 23:03
you think energy because it's improving her energy? Do you think that not being in pain is giving her more energy?

Liz 23:09
It's hard to say. It could be both, yeah, and I feel, you know, like last year, she was giving she was coming down with strep throat all the time, or what she thought was, I think it was definitely strep throat once or twice, and then other times, you know, she would just have a she was always complaining of a sore throat, and I wonder if that was like her thyroid was, was sort of inflamed, and it felt like sore when she was swallowing. I'm not sure, yeah, yeah. Just just energy overall and joint pain for her, yeah, joint pain, yeah, yeah. Sometimes it would be in her hips, and then other times it was her back. And, you know, some of it could have been cheer related, for sure, because she does a lot of lifting. She's, you know, she's one of the the kids that I think has either Stan most. So she's very hyper mobile and flexible. And one of the things with that is that it's easy to hyper extend, and, you know, put strain on your your joints. Is she

Scott Benner 24:04
so cracky? Does she What does her back or neck crack all that stuff? Yeah, yeah, yeah. She feel like, you can't get it, like, to stop Arden. Using my Arden as an example, you could crack gardens back, it'll explode. And you could do it five minutes later, it'll do it again, yeah?

Liz 24:18
And that's how, that's how I am, too. I went down so many rabbit holes last year. I went down the thin All right? Thyroid one, the Ehlers, danlos rabbit hole. And originally I was thinking three of my kids and my husband. Have you looked into the the bitin score? What is this for Arden? Have you? It's the scoring system that they use for to diagnose the hypermobility. Oh, kind of

Scott Benner 24:40
yeah, there's think that's happened to Arden in a doctor's office before, like,

Liz 24:44
you get one point if, if your right elbow hyper extends, and one point for your left and your if your knees hyper extend backwards, if you can touch your hands flat to the floor, bending down, and if you can bend your you. Your thumb and have it touch your forearm, yeah, yeah. And then, so that's, like the, the major criteria. And then there's other things, like hernias and organ prolapse and stretchy skin, all that stuff I was thinking, and it's hereditary, right? So I was thinking, okay, my husband, he can easily pass he gets a positive I've diagnosed him with it.

Scott Benner 25:24
What a fun date. That must have been, honey. Come in the bedroom. He was like, oh, it's happening. And he's and you're like, can you move your thumb towards your form? He's like, this isn't what I thought was gonna happen. But okay, what else that's awesome. You diagnosed him, by the way, byton, B, E, I, G, H, T, O, N, scoring system, if somebody wants to look it

Liz 25:45
up, you know, I just assumed, like the kids, they they can all pass it to right, like my, especially my, my younger one, he's his middle, you know, like the ends of my, like the last joint in my fingers, they all bend backwards. You know, I have, like, the the tips of my fingers basically bend backwards, but also the middle joints on his fingers also bend backwards, so he can make a C, a backwards, C with his fingers, if he bends his fingers, you know,

Scott Benner 26:13
hold on. That just gave me the heebie jeebies. He's

Liz 26:15
so stretchy and so bendy. And then middle son, you know, he was doing, like, party tricks, you know, when he was little, like, his his head and like the back of his head, he can bend his back and it basically touches his back, you know,

Scott Benner 26:29
with the back of his head. Oh, so that wait, yeah, so he can tip his head

Liz 26:33
back and, like, basically touch the back of his head to his back. Oh,

Scott Benner 26:38
my God. Like a pest dispenser, yeah, yeah.

Liz 26:42
Interesting. He used to do this thing where he would bring his his foot up, like, bend his knee, and then bend his like, basically, his foot would end up, like, on his pelvis, but his knee, with his leg was pointing down straight. Like, it's hard to describe, but it's just

Scott Benner 26:58
super bendy, right? Yeah, Pence pence dispenser, don't do that. Yeah, that's crazy. I'm gonna start calling him that. Hey, Pez, what you start calling your kids. I want to be invited Felix. I want to be invited to dinner if that happens. Because if I feel like I'm the one who's like, like, brought that to fruition, I don't think he's gonna enjoy that. Tell me more about like, whatever, because are, is everyone using low dose naltrex? Like, and are you going poor paying for it because this insurance cover it? Well,

Liz 27:27
okay, so now the three of them were taking it. So, you know, I had my other son who, you know, the one with type one and thyroid, even though he's on on Synthroid. I thought, you know, why not? Like him, of all people, like, he has all this stuff. Like, let's help him out with his inflammation. He sleeps a little bit better, and he I think his mood is a little bit better with it, but it's hard. You know, his thyroid numbers are up and down. So my husband and son, they haven't had such a significant it is helping them. Like, I think it's helped my my husband's mood as well, but I think my daughter has seen the most significant benefits from it. But interesting, I wanted to talk about so on the there's a website. It's called LDN research, trust.org, and it has, you know, all the information about it. But when I went before we we started taking it, I I kept coming across whenever they talk about people with diabetes using it, doctors advise their patients to lower their insulin doses, because it does help with insulin resistance. So I was really careful when we started out. I was watching their numbers, and they both did have to lower their doses, and especially when we would see it when we were bumping up in dose as well. So it wasn't huge. It wasn't like what you talk about on your GLP episodes, but I'd say maybe 10% 15%

Scott Benner 28:50
I think that's a lot, by the way. I think that that's, yeah, that's awesome. Yeah. You know

Liz 28:53
that wasn't what we were going for, but it's, you'll take it's yeah for sure. Take a second and

Scott Benner 28:58
collect yourself. I want to read to people. I'm going to people. I'm going to do everyone's favorite thing, read the Internet. Low dose Naltrexone. Benefits for autoimmune conditions. Immune system modulation balances an overactive immune response, reduces auto immune attacks on healthy tissue, helps regulate T cell activity to decrease inflammation, reduces pro inflammatory cytokines, proteins that trigger inflammation, increases production of anti inflammatory cytokines, temporarily blocks opioid receptors, leading to increased endorphin production, higher endorphin levels improve immune system function and reduce pain under pain relief alleviates chronic pain associated with autoimmune conditions like joint pain and neuropathy, reduces central nervous system inflammation, which is called neuroinflammation, which is linked to widespread pain, slows disease progression, may help the progression of autoimmune diseases like MS or lupus by reducing systematic inflammation. For Ms, improves fatigue, spasticity. And neurological symptoms. For ra reduces joint pain, swelling and stiffness. For Hashimotos, lowers thyroid antibody levels and may alleviate fatigue or brain fog, inflammatory bowel disease, Crohn's and Ulcerative Colitis, colitis, excuse me, promotes intestinal healing and symptom reduction, may reduce systematic inflammation. Fatigue for lupus improves skin and joint inflammation for psoriasis and psoriatic arthritis, Sjogren helps reduce dryness and fatigue. Systematic sclerosis may alleviate symptoms like pain and stiffness, reduces chronic fatigue and brain fog, often associated with autoimmune issues, so it can help increase your quality of life that way, or by improving sleep, protects against neurological inflammation, auto immune conditions like MS or lupus, minimal side effects, provides a safer alternative for people cannot tolerate stronger immune suppressive drugs for insulin resistance. Insulin resistance is closely tied to chronic low grade inflammation, a low dose naltrexone, lowers pro inflammatory cytokines. So we know that's going to help there improves metabolic function. This is all under insulin resistance. Chronic inflammation disrupts the body's ability to use insulin effectively by reducing inflammation, LDN helps restore normal metabolic pathways. LDN can aid individuals with obesity related insulin resistance by reducing inflammation, some studies show it helps regulation in appetite, reduces cravings, which may indirectly improve insulin resistance. It can modulate the gut immune access. It says emerging evidence links gut inflammation to insulin resistance. LDN reduces gut inflammation, which may enhance glucose metabolism and insulin sensitivity, and there's potential benefits for type twos as well.

Liz 31:49
So yeah, Isn't it incredible? I mean, I'm like, Why? Why is not everybody on this drug?

Scott Benner 31:55
A number of months ago, art and Zendo tried to give it to us, but it's cash pay here, you can't get an insurance company to cover it.

Liz 32:03
Okay? So there's a workaround for that, like so right now, our PharmaCare is our government plan is covering ours, which I didn't know it was going to, but I was that was a pleasant surprise. So we there is a deductible on our PharmaCare, but we always reach it. I mean, it's huge, but because of all the diabetes stuff, we always reach it. So the 50 milligram pills themselves, I guess, are very, very cheap. And so what a lot of people do that can't afford the med is they dilute it in, like distilled water, keep it in the fridge, and then draw up from that, that correct dose, you know, so that you could have to mathematically work out how much water you put in and what the dose is. So that's one way that that it can be affordable for people that are not able to otherwise. Wow, I am taking it now as well. So I like, like I said, I'd asked my doctor, and she wanted me to try that Cymbalta first. And I was like, no, and then I ended up booking in with the nurse practitioner as well. And she was like, Oh, I have no problem prescribing it for you. I mean, that's way more sense to try something low risk before trying something with lots of side effects. So it is helping a little bit. I like my overall pain. I feel like it's helping my immune system. I felt like I was always one of those people that was, you know, I would pick up every cold or get sick, and I haven't been sick since I since I took it. But, yeah, I don't know. I think it's amazing. And I think the reason why a lot of people don't know about it, there aren't a lot of studies, because it is such a cheap drug, there's no motivation for people to do studies on it. I

Scott Benner 33:40
was wondering that. Because, yeah, the lady that talked about it for Arden and for Kelly, by the way, she's just a forward thinker. And it did occur to me, like, when your doctor was like, no, why don't you try this one that, you know, the sales people have already told me to tell you

Liz 33:55
about. I know, I know it's gross. It did feel like that a little Yeah, I really recommend it. And if you know, if, if people are interested, and they they want to reach out to me on like, through the the group, I'm, I'm happy to talk to anybody about it. And there is a great Facebook group too, like a LDN Facebook group with lots of knowledgeable people. So I think it's definitely worth trying if you have any autoimmune stuff.

Scott Benner 34:18
I mean, it's been a benefit for your family so far, you think, yeah, just looking

Liz 34:22
at the difference in my daughter, it's, it's made a huge, huge improvement. I mean, she was, she could barely pull it together last year with her school and and so

Scott Benner 34:35
you think it helped your one son who was having gastro problems. Do you think it impacted that at all?

Liz 34:39
You know, it's hard to say. So I jumped around so I was talking about how I thought that he was allergic to the Synthroid filler. And when we went in for testing, what happened with that is that, you know, I brought the actual a Casey, I sourced out Acacia powder, and then they also tested him. They crushed up one of his. Synthroid pills and tested him with that, and he didn't react to that. So I was wrong, and it was right. I'm

Scott Benner 35:09
not Is that a thing we brought up in your first recording where we didn't record your voice, or here I

Liz 35:13
got, I'm not sure. Well, okay, so just real quick. So I was sort of racking my brains like something he's, he's reacting to something. He's, I know he's allergic to something. I had this, you know, nagging feeling in my head, because he was, you know, had all these gastro issues, and I had read that you could be allergic to the filler if you have asthma and a grass allergy. So I went to the end of saying, I think he might be allergic to his Synthroid. And she, you know, basically looked at me like I had two heads. But she was willing to appease me and try to, you know, go through a compounding pharmacy and then I had the allergy testing done. So I had to tell her that she was right in that, but I was also right because it it turned out that he was allergic to something that we didn't know, and he was that's what was causing a lot of the gastro issues. So what did you figure out he was allergic to soy, which is in everything.

Scott Benner 36:04
So does he just breathe air now through a straw with a piece of cotton over it? Or how does he

Liz 36:09
Yeah, poor guy. I mean, he was already so limited in what he can eat, and at the time, he also had been vegetarian his whole life. He was never crazy about, like, the meat alternatives, but anytime that he would have one, it was soy based, you know, so he was, he was just getting, oh my gosh, yeah, even when he wasn't eating tofu or soy, he always hated tofu. But every once in a while, I'm like, Just eat it, you know, like, you need protein, and then he would eat it. And then, you know, probably for the the days after that, he was, you know, having all sorts of issues. And then, yeah, it was just very hard to narrow down, because there's, it's in, yeah, it's in everything. And his allergist does say that he's okay with having soy Letha sin and soybean oil because they're so highly refined that he didn't think that he was going to that. So we kind of eat those foods cautiously and just watch him. But anything with actual soy like soy sauce or soy protein, or, yeah, he can't have that anymore, and it does seem like it's, it's helping him. Like, yeah, last year we had, we ended up having a colonoscopy and a endoscopy, and because we also thought, well, maybe he's, you know, celiac, or maybe he has guessed, you know, gastroparesis or something. So all these

Scott Benner 37:25
different problems the body is just attacking itself in different places and ways. And it comes out in the real world, you know, the way it comes out, and then it sends you down all these rabbit holes. And it's just, it's, it's crazy, almost, that the doctors don't start with that. Like, I always think it's crazy, the doctor doesn't start with what's wrong with you. Well, let's keep in mind you do have an autoimmune disorder, you know, and the one you have is type one diabetes, but that's an indication that your body is looking at itself and going attack. So, like, why would it not happen? Like, just because they, you know, it manifested in your type one doesn't mean it's not happening in other places, smaller places, joints, fingers, you know, your your stretchy bits, your ligaments, like, that kind of stuff. Like, it could be happening everywhere, like, and it makes sense that it is right, like, so it's just so interesting that we skip over that, and it's, you know, because I don't know if we talked about it in this one or the the ill fated recording, but your son waited nine months to go to a gastro for the gastro to tell him, like, ah, it seems hard to me. Well,

Liz 38:34
it was actually, yeah, it was more than nine months, because I was looking back on my emails, and it was I had been asking to be referred for three years knowing that something was wrong. Yeah. I mean, I feel like one of the things that I wanted to talk about was just, and we've, you know, we've covered it, I guess, but just knowing that it's okay to push your doctors when you know that something is wrong with your kids. Because, had I not taken my daughter in and asked, you know, for the screening for the auto immune stuff. Maybe at this point she would have been diagnosed with depression, be on, you know, be put on depression. That's, you know, unnecessarily or and especially with women having this sort of invisible illness where you look okay on paper with your TSH, but you have a raging auto immune disorder attacking your thyroid. And there's legitimate journal articles out there saying that, yes, you it's a thing, you can be symptomatic and feel this happening despite looking normal on paper, right?

Scott Benner 39:34
Hey, did your daughter suffer with any acne? No, no. Not yet. Okay, well, maybe, like, maybe, like, a tiny, tiny little, but not like, persistent or anything, no. But

Liz 39:44
my second son, who's 15 and a half, he's starting, starting to, okay. Do you have any advice for

Scott Benner 39:52
that? Well, no, I just are. You know, in the last couple of years, Arden's been hit pretty hard, and the only thing that seems to like dull it is. The GLP, okay, so as you're talking, I mean, I'd be remiss to say, like, there's a bottle of low dose Naltrexone in my house that's meant for her that we just have never, like, done anything with.

Liz 40:11
Oh, okay, I wonder if that would help.

Scott Benner 40:15
Yeah, I'm interested, because in the end, it's inflammation, is what I'm thinking. Yeah,

Liz 40:20
right, just last night, when I was sort of gathering my notes and stuff, like going over, you know, I think, like months ago, I sent you an email with, like, links of all these articles and stuff. So I was kind of going over them again. And one of the recommendations, I think it was like, from the American Diabetes Association or something, if you have what, I guess is it's called poly glandular auto immune syndrome, like where you have type one diabetes and Hashimotos if you if you have somebody in your family that has that, what they recommend is routine screening of all your first degree relatives for other autoimmune diseases. And when I went in after finding Hazel. You know, my daughter and husband had that I went in wanting to have my other two kids screened. And they're a pediatrician who I really love, and she's always been great. She was making me feel like I was over the top and overly anxious about even asking that. And she, you know, she was like, why would you, why would you want to do that? Like, there's no reason. Maybe they don't want to know. Or, you know, wait,

Scott Benner 41:28
tell me that. Start that story at the beginning. Yeah. So

Liz 41:31
what I was saying is, last night, I was going over my my notes, and then I came across this recommendation that if, if you have somebody in your family, what they recommend is that everybody gets screened and even sent to genetic testing. It kind of hammered home that I wasn't, I wasn't that far off base, you know, wanting to get my other kids screened, you know, for Hashimoto,

Scott Benner 41:51
but the doctor just told you, like, why would you want to do that? Yeah, you know, she didn't

Liz 41:55
say the word crazy, but that was like, she's like, you're, you're, you're overly anxious, and she's, like, and rightly so. You've had a lot, you know, you have a kid with a lot of complex medical needs, but basically, chill out. You don't need to, like, look for it everywhere. You know, it was just, I guess,

Scott Benner 42:12
just say, I'm not looking for it. It just, it's here, it's here. I just

Liz 42:16
want to know, you know, like, so I can, yeah, so I can prepare. And maybe, yeah, I think it's good just to follow your instincts and and, you know, I wasn't wrong in thinking that they should be tested, you know, but maybe here in Manitoba, when they they have to come up with a reason, you know, when they're checking off that if they're going to get audited or something, you know, for sending unnecessary tests, I don't know, but

Scott Benner 42:44
it does feel to you like that some of it is about that, is that they just, yeah, I think so yeah, cost and I don't want to get in trouble, like that kind of thing.

Liz 42:55
Yeah. And then also, you know, she was, she was thinking that it would, it would create anxiety, and especially my older son, you know, the younger one probably wouldn't.

Scott Benner 43:04
I'm stunned that they wouldn't think that actually seeing your kids struggle and be sick would also not bring anxiety, didn't I mean, like, I don't understand, like, something's wrong, let's not try to fix it. That'll make you anxious. You don't think that something wrong is making me anxious. Just

Liz 43:23
like, let you know. Let's just sit back and wait for things to get really bad, you know, before we we fix it. And that kind of leads me to another strange thing that that happened with me this summer, and I guess, potentially still happening. I don't know, so I don't know if you remember, on one of your your Facebook Live things, I wrote in I was like, I think I'm getting diabetes. My son and my husband have it. The nurse practitioner, she ran the summer, or I guess in the spring, she ran my insulin hormone, just like she did a bunch of blood tests, right? And it came back as not flagged as low, but it was low enough that she assumed that I ate low carb. So she said, Okay, so you eat low carb, and I'm just like, No, I eat, like, tons of carbs. And she said, Well, you know, since you it could be, could be anything that's causing it, but since you have access to CGM, like, it might just be interesting for you to put one on and see what's happening. So I put one on anytime I've ever done a blood a finger Coke, I've always been in the fours, like, I've never even seen a five point something when I test my sugar, right? And so I put one on, and my average blood sugar was 6.5 and my time in range was, like, 80% in range, instead of, you know, like I assumed I'd be, you know, 96 or 98% in range or something, you know. And I was often in the range, but always on the high end of the range. And every time I would eat, I would, you know, I would go up to every breakfast, I would spike up to, like, 11 or 12. Yeah, and I would come back down, but I would, I would hit, like a 12.5 or, you know, I had a 14 at one point, which, in my head, I'm, like, I have diabetes. Like, this is like, and my brother, who is 55 or something, last Christmas, he was diagnosed with lotta, and he was misdiagnosed as having type two for three years. But anyway, so in my in my head, I'm like, okay, my brother has lotta, so it's clearly on my side of the family, and I have maybe just caught it in the very, very early stages. So my doctor gave me a standing order to go get like, a random glucose but every time, you know I I would go out, I'd see my blood sugar go I'm like, Okay, I'm 12. Okay, I'm gonna get the lab now. And then I would be sitting in the chair, and I'd see my blood sugar go down. So it was like, Yes, I was hitting those numbers, but I wasn't staying up there. And so I never, I never caught a lab value higher than nine, and had just aged out of the trial net like I had done trial net when my son was diagnosed, but like 16 years ago, and I didn't have any antibodies, but I know that you can develop them at any time, and I know that one of the things that can lead to an autoimmune disorder is being super stressed, which I Feel like I've been super stressed the last 16 years. Yeah, excuse me. Sorry, yeah. So this summer, I was like, Okay, this is like, I've just happened to catch it at the very early stages, and I found myself in this sort of limbo land again, because I couldn't my I couldn't get into an endocrinologist without a diagnosis, and I couldn't get the diagnosis without the lab result of the high blood sugar, even though I was going up to 1112 multiple times a day. But just not staying there, I was coming back down. You know, it's not significant, like having a I was mostly hanging in the high sixes and sevens, and it's still in range, but it's not, I was never seeing fours, and I was never seeing steady lines. I was like, up and down and up and down all the time, you know? And I remember, like, you said, you put a sensor on and you couldn't, no matter what you did, you couldn't get over a certain number.

Scott Benner 47:12
Yeah, I had to

Liz 47:14
eat. I think it's probably 10. Like, like, yeah, like, I'm trying to think the translation of the numbers.

Scott Benner 47:20
Well, I can, I can get you that hold on a second. But I'd eat three slices of pizza and then, like, eat a box of, like, sugar candy over top of it to get my blood sugar to once over 160 Yeah, which would be, what, like an 8.9 Yeah, yeah. And, I mean, so I haven't done it in a couple of years now, but, I mean, I ate three slices of pea. I was forcing the food down. It was way too much food. So like, Here, give me, here's a whole bunch of fat like that. Slow my digestion way down. And then I forget what the candy was, but it was probably something like bottle caps. Like, I was looking for something that was, like, just sugar, and then I just ate a bunch of that over top of it, like Swedish Fish, like that kind of stuff. That's what I had to do, not having diabetes to get my blood sugar over 160

Liz 48:03
Yeah. And sometimes I would be, you know, I was like, I was out for a hike, and I was I hadn't eaten in, you know, a couple hours, and I would be, like, an 8.9 or something. I'm like, this is this is not right, you know, like, I know something is off. But then I would talk to my doctor, and it's like, well, it's normal, you know, people go, people's blood sugar goes up, you know. And my last a 1c was 5.1 she's like, I can't send you to an endocrinologist with a 5.1 so let's wait until you're due for a new a 1c and then, then we'll, we'll go from there. And meanwhile, this I had started low dose naltrexone, so I don't know, like, I don't know if that played any part in it, if, if that is somehow helping my blood sugars a bit as well. It's, it's very strange. So I went, in September, I went for a new a 1c and my a 1c was 5.1 again. So no change. So I'm like, Okay, well, maybe, maybe my blood sugar has always been doing this, and I haven't known, because I haven't worn a sensor before, which is possible. I've just never, never seen a number over four. And then when I was wearing a sensor, I was hardly, like, hardly ever, for, you know, I if I did dip down, it was like, I would have that reactive hypoglycemia, where I'd have a fast acting carb, and then I would tank, and then I would go back up again, though that, but that was the only time I was into the forest, was after I'd had a fast acting sugar. And then I would, I would drop really fast, I don't know. So I still think something is potentially going on. But then so I stopped. You know, I can't wear my son's sensors all the time, so and my numbers were, they were actually kind of gradually getting better. So I was like, I know. I'm not in any danger of going into DKA. I'll just keep an keep a watch on it. And so the other thing is, only endos can order the type one antibody testing, so a normal doctor or any other person in Manitoba can't. Order that, and I was too old for trial net to test it again, so I felt like I was sort of stuck in this point of like I had to get worse before I could get better. And T seal is not available in Canada yet, but it's on my list of things, like, I'm gonna start making some noise. Like, I've already, I've spoken to the health minister at gift function, like a diabetes function. I was like, we need to start the pro because it's on the pipeline of drugs that are coming to Canada, the T seal. But as it stands now, if nothing changes when that drug is available here, if nobody can order antibodies to know if somebody is in the early stages, nope, that drug is not going to be available for people here. So are

Scott Benner 50:40
you genuinely worried that you have diabetes, or will have diabetes, or do you think you're do you think you're now looking too closely at things like, I don't know,

Liz 50:48
I don't know, like I so again in September, I retested my ANC, and my ANC hadn't changed, but I had also upped my LDN dose as well. So I don't know if I have no idea, I don't know what's going on. I've and I know that Lada, if it is Lata, it could take years, you know, for it would

Scott Benner 51:11
also, I mean, listen, I'm not saying you're not, like, not not seeing ghosts, or you are seeing ghost or whatever. But, I mean, your husband has type one, right? So it would be crazy if you ended up having type

Liz 51:22
one, I know, wouldn't it, yeah, but my brother has it, but your

Scott Benner 51:26
brother has Lata and, yeah, and has, he has his, is his lot of still? Like, is it still Lata? Like, is it still slowly happening? Or do you think he's full blown type one?

Liz 51:35
Oh, well, I think no, he's full blown now, but, like, it was over sort of three years when he he's funny in that he didn't tell anyone it was happening. So when he was when he thought he was type two, for three years, he didn't tell me, which, if he would have told me, I would have been like, go get your antibodies tested.

Scott Benner 51:54
I might have moved him along. Yeah. Also, by the way, I want to say, if you do end up listen with your your brother's situation, your husband's situation. Maybe this is the secret sauce to giving kids, like, a bunch of different autoimmune issues. You know what I mean? Like, yeah, maybe you, you, I hate to say but like, maybe you will end up with type one. Then you'll be able to step back and go, Well, it does make more sense that my kids all have allergies and these different issues and the joint pain. Like, it does make more sense now, because they're getting it from both bloodlines, basically,

Liz 52:24
yeah, yeah, yeah. So as it is now, I'm not, I'm just, it's sort of on the back burner, like I'm, I'm gonna watch out for it. And the other thing is that I did, I lost a lot of weight, you know, and I'm, I'm small to begin with, and, like, over the course of this last year. But it also coincided when I started my ADHD meds, which lowers your appetite a bit. But despite that, I was still, I felt like I was still eating, you know, a normal amount. I didn't pay any attention to my weight loss because I knew I'd also recently stopped migraine medic medication that sort of made me gain weight. So I'd stopped that so I wasn't, it didn't raise any red flags for me that I was losing a little bit of weight. But then when I in the summer, when all those, you know, blood sugar, blood sugars, I it sort of dawned on me that, yeah, I had lost a significant amount of weight since the year before. Yeah, and, you know, I was, you know, I felt like I was peeing more and more thirsty, and

Scott Benner 53:21
it sucks that it's all in your head, to be perfectly honest. Like, it just, it's, I mean, you've been looking into people's health for so long, by the way, I've lived through this. I've lived with people going, like, hey, stop looking into our problems. And I'm like, you still have problems. Like, nobody's really gotten to the core of these issues. Like, yeah, do you really just want to, like, go, Okay, I guess this is it, like, this is as good as it gets. And we'll just, I think you need to keep looking. But it's funny. It isn't crazy that you could be on the path to it, and it isn't crazy that you might just be looking too hard. That must be frustrating, I guess is my point. Yeah.

Liz 53:57
I mean, you know when it was happening, I was pretty stressed out about it, but now put a sensor on recently, just to, sort of, just to sort of check in and see what was happening, and my numbers were a lot better, but I was having, I was having more lows, which is straight and again, like, maybe it's the LDN, maybe I was like, maybe there was something that my body was fighting off this summer for a couple months, that was creating, I have no idea, but it's just, I'm going to keep an eye on it. But it was just, I thought it was interesting in that other people in that are living in that experience right now in Manitoba, they are stuck. They would basically have to get to the point where they would go into DKA before they could, you know, like, it's like you have to get you have to get sick before you can get better. And same thing with with Hashimotos in Manitoba, they won't start you unless you get lucky and get a doctor that's willing to treat you earlier. The protocol here is you don't even. Start medication until your TSH reaches 10, and then they put you on meds for the first time. I don't know if, when my son was diagnosed, if that's, if that's what they waited for him to get to I'm not sure. But anyway, yeah, it's, it's, it's weird. But my son, also, he has a diabetes alert dog. Now his dog had been alerting me, and I thought it was just because, you know, she was looking for attention. Or, you know, like, sometimes I would go in at night, if, if I go in to treat a low blood sugar for for him at night, sometimes she will alert me. Instead, I think when he's lying down in bed, she doesn't know, like, where to paw him, and so I just thought she was alerting me about him. But then when I put the sensor on a couple weeks ago and saw that I was dipping down, it was like, well, maybe she really, was truly alerting me, because she's trained to alert anything below, like 4.7 Yeah. So if, if I was, you know, like, even if I was a 4.1 and I was, you know, this last couple weeks, I was, you know, getting down into the high threes. So anyway, I just, I thought that was interesting. And if you

Scott Benner 56:12
end up with type one, you're gonna have the biggest I told you so ever, I mean, it's not gonna, it's not gonna be super satisfying, but, you know, you'll have it. Yeah, I

Liz 56:20
recognize that about myself is like, you know, I do go down these rabbit holes and I hyper focus on medical stuff because I feel like I have to, I have to have all the knowledge for my family, because I know the doctors aren't going to be pulling all the pieces together. And I have great respect for doctors and but I also just know that, like you said, it's not like AI, where it's not an algorithm where, like, if you if you name one more symptom, they're not going to say, Oh, it must be this auto immune disease.

Scott Benner 56:49
You can't put it, you can't put it together. Like, it's too broad, sweeping for, I think, for the generalized human mind to just especially an endo who's doing a bunch of different things, there's no way that thyroids on the top of their list. Like, you know, like, people know, like, we use a doctor that's local here, but she's dug in on this stuff. You know what? I mean? Like, she's spending her days really, like, closely, considering these things, most endos are treating type twos, and you're walking in there going, like, I have a thyroid issue, and they're like, oh, thyroid, let me look at the thing. Then it that it's green on your test. You're okay. I mean, that's really what's happening to you. You know what? I mean, yeah. So, and meanwhile, I was doing a little like looking while you were talking, just now, the observed increase in frequency of Hashimotos can be attributed to combination of different factors. So, yes, it's been increasing over decades. Partly, they think it's improved diagnostic techniques. So you know that they're you know that you have it, that the medical community has become more aware of it. There's also some stuff about iodine intake that could have impacted it, but also environmental toxins like industrial chemicals and pollutants, heavy metals, radiation exposure, hereditary factors, dietary factors, processed food and additives increase consumption of processed food may contribute to inflammation and immune system dysregulation, right? Like there's chronic stress, there's a lot of things that have happened in the last 40 years that impact this inflammation, and I think you're seeing what comes from it now, you know? So, yeah, one

Liz 58:19
thing that I wanted to mention too, which I found super interesting on my deep dive. You know how a lot of doctors are, endos are reluctant to prescribe an addition of t3 medication, and they say, you know, it's, it's so

Scott Benner 58:35
that's not necessary so

Liz 58:36
rare that it would work, right? So I feel, I feel like I discovered, I didn't discover it, but I came across a definitive thing that would, you would be able to tell if, if you would be a candidate for the t3 which it was super interesting to me. I had no idea, you know, I knew that the thyroid is produced in the body, and it, you know, converts and changes and everything. So the genes that are responsible for making your thyroid hormones are called the and I could be saying it wrong, the diabetes genes. And there's, there's three types of them. There's like the Dio one and Dio two, Dio three, and they all have their their mechanisms. But I found out, and again, this might be a link to your your bipolar question that you always ask. So originally, when I came across this, I was like, that's when I wrote that email to you. I was like, I have to tell Scott this. Like, this is the link. This is the missing link. If somebody has a polymorphism or a variant in their diabetes two gene, they are the people that need an addition of a t3 med. Isn't that cool?

Scott Benner 59:47
Wait a minute. Seriously, yeah, say that again.

Liz 59:51
Okay, so if you have a polymorphism, a genetic like a genetic mutation of your. Diabetes gene number two, you are the person that likely needs a combination t4, t3, therapy.

Scott Benner 1:00:09
How do we find that out if we have the polymorphism of the blah, blah, blah,

Liz 1:00:13
blah, it's specifically called the E, H, r9, two, a, l, a, dash, D, i, o2, Gene. And there are other Hold on

Scott Benner 1:00:22
a second. Thr, go ahead, boy, hey, listen, you get out. You ever go outside? You ever see the sun?

Liz 1:00:30
Thr, so my husband was gone like a year? No, I know, according, my husband was gone a year. So this is what I would do at night. I would like read medical journal articles.

Scott Benner 1:00:39
Go slow, T H, R, T H, r9,

Liz 1:00:43
two, a, l, a, yeah. Dash, D, I O, 2o, or zero,

Scott Benner 1:00:54
uh, diode, 2e,

Liz 1:00:55
I o2, yeah, the the Dio two, polymorphism, diabetes. I'm

Scott Benner 1:01:02
asking the internet about the test for it, but you got deep, it's

Liz 1:01:05
probably just a genetic, genetic like you would have to go to a geneticist or get your your raw DNA sequencing done, or, or, but if

Scott Benner 1:01:13
you have so, if you have this, you need the t3 Yeah,

Liz 1:01:17
most likely, I think. And so there's this whole, I mean, there's a whole list of things that the people that have this variant have. So I couldn't find any articles that specifically talk about this variant and type one diabetes, but it talked a lot about people with Hashimotos with this variant and that so it causes insulin resistance. So a lot of people with type two diabetes, this is the genetic factor that would cause them to have type two diabetes, obesity, hypertension, osteoarthritis, dementia, like a lot of neurological things, dementia, thyroid, cancer, mild cognitive impairment, bipolar. There it is bipolar disorder. So the people that have this variant, it could be the cause of their bipolar, I guess. And not to say that if you do have this variant, you're going to have all these things,

Scott Benner 1:02:10
sure, sure. But if you have these things, and you go back and find that variant, it's a AHA situation. Yeah,

Liz 1:02:15
there are gestational diabetes. Yeah, it's, I don't know. I just found it super interesting. Yeah,

Scott Benner 1:02:21
no. And you hadn't had sex for a year, so you were interested by almost everything. I don't know if, did we talk about it in the first part where your husband had to go away for a year for work? Yeah,

Liz 1:02:32
I talked about in the first part, he was on sabbatical, so he was gone a lot, and then I felt like that that year, it was like the year of health stuff, falling apart. So my, you know, my daughter and my son's thyroid being totally mismanaged, and then my husband getting diagnosed with Hashimotos. And then he also, he's going for a celiac scope tomorrow, like his celiac antibodies were at the high end of the range, so not, not technically out of range, but they're high enough, and he has Hashimotos and type one. I'm like, Well, yeah, chances are you're gonna You

Scott Benner 1:03:07
guys better get in that bubble that John Travolta had and start eating oxygen. I think that maybe is the only answer for you. But yeah, in the end, though, you just are a family that's kind of riddled with auto immune issues.

Liz 1:03:17
Yeah. So I came across another like, if you're looking for an argument to give to your if, like, if your doctor is reluctant to try t3 another thing that you can you can say is you can say, okay, test my ferritin before you give me the t3 and then give me the t3 and then test my ferritin after. And if your ferritin goes up, that shows that the t3 is is working, because the reason why your ferritin was low is that you you're not having the proper conversion. And really. So, yeah, I thought that was also interesting. That's awesomely Interesting. Yeah, so the quote was measuring serum ferritin before and after t3 therapy may prove useful in the diagnosis of thy rate hormone resistance.

Scott Benner 1:04:04
Can I have all your notes? Are your notes typed in front of you, or are they written on like, I

Liz 1:04:08
scribbled out like, six pages of notes last night, but I can send you the links to all these things, but and then

Scott Benner 1:04:14
please listen to me, yeah, send me all the links and take photographs of your scribbles and send me the photographs, okay, and I'll have, I'll just let chat GPT turn it into text for me so I can look at it. I would love to. Okay,

Liz 1:04:27
you're gonna love this. So in one of the last endo appointments, this was even before I found out his TSH was at 31 luckily, we meet with the educator first. And I really, I love our educator. She's great. She also has type one, and she's so nice.

Scott Benner 1:04:43
She's been in Canada for so long. Everybody, no matter how much they screw you're like, I love these first they're lovely people.

Liz 1:04:48
Yeah, well, the educator is, you know, she's great. She's great. So I, I completely vented to her, you know? I said, when we were told about his thyroid, we were told it wasn't a big. You. And, you know, I didn't do my research, and since then, I've learned all the stuff that should have been told to us. And I know that, you know, maybe part of it is they're they're not wanting to overwhelm the type one parents, because they know that such a big thing that they, you know, it's like minute to minute, but the thyroid is huge, and I didn't realize I should have put it together, because it's the same doctor, it's the same clinic that we see for his thyroid, that we see for his diabetes. But I in my mind, they were completely separate, and I never connected them. But then I find these research articles, and I actually just posted the links of them. The other day, somebody was asking about them on the Facebook group, like, if they were connected, they are so closely connected that if one is out of range and mismanaged, it directly affects the other. So for instance, if you have high blood sugars rampant, high blood sugars all the time, it's going to affect your thyroid function, and vice versa. If your thyroid is not being medicated properly, it's going to make your blood sugar harder to control, and it's like this, you get stuck in this vicious cycle. I feel like it's important enough that you feel like there should be information sessions, you know, it would also be a way to, you know, for the type one parents to connect with other parents. It's it can be a very isolating, lonely disease when you know your friends and family, they try to understand that you don't, you don't really know, unless you go through it yourself too, right? So I can see how it would be extra work for them. But when you get diagnosed with diabetes, there's, you know, you go through training, and you go, you you get, sometimes a binder sent home with you, you know, like you it's like stuff that you have to know. And I feel like there's stuff with maybe not as much, but stuff that you should know with thyroid that we weren't told, and I had to find out. And I, when I said that to the endocrinologist, I said, I feel like I had to do my own research. And she said, Well, you don't have to do your own research.

Scott Benner 1:06:58
Did you say, Well, I was waiting on you, and it wasn't happening,

Liz 1:07:01
you know, like, for instance. So I don't know. Maybe you know this, maybe you don't. But did you know that if you go for your thyroid test on like, morning fasting, your TSH is going to be significantly higher than if you go, like, two hours after eating, like post pan, friend or I can't say that. You know

Scott Benner 1:07:22
what I mean. Post, oh, Jenny and I went over this pro post, real, prandial, all right. Well, figured out. So I

Liz 1:07:31
have an article that says, like 75% of the patients in this study were reclassified when they tested them with a morning fasting test versus the afternoon test when they had already eaten. Like, that's significant. So that means that people could be getting the wrong they could be getting the wrong dose or not getting a dose change when they they need one. No, for sure, because, you know, they're like, Oh, your your number's fine. You're like, in range. It could look optimal when it's out of range. And so 75% of the people in the study were reclassified as subclinical. Because that's

Scott Benner 1:08:08
a significant number, by the way, it yeah, very significant. So just listen to Scott medicate the symptoms there. I'm taking all the thinking out of it for you, if you have thyroid symptoms, and did medicate the symptoms till the symptoms are gone. Yeah,

Liz 1:08:23
and maybe your doctors are looking at the time that you did your blood like the timestamp on when you did your blood test. But maybe they're not. Probably not. I feel like it's important for people to be aware either do it one way or the other, but stick with that, you know, or just always do your thyroid test with morning fasting. I want

Scott Benner 1:08:42
to tell you, Liz, I'm I'm going to turn this episode around very quickly, and it's the first time. I'm going to send it to art and tell her like, I'm not going to pay for college if you don't listen

Liz 1:08:52
to this. Oh, and the other thing did you know about biotin? Like, before you do your your thyroid tests, depending on, I guess, like different labs would use different assays or whatever, but it's really important to stop your supplements that contain biotin before you do your, like, a couple days before you do your thyroid test, because that can also falsely lower the lab value. Like, it's not going to affect your actual TSH level, but on the lab it will show up as lower than it is. And also eating, like, if you're eating a bunch of foods, like, if your diet is, like, rich in biotin, like eggs and pork and like, you can do an easy Google search of like, biotin rich foods. And so ideally, you would stop eating those a couple days before your test, and stop your supplements that contain biotin, because you don't want to have anything that's going to skew your results, especially if, if you know you're super symptomatic, and you're hoping that your doctor is going to increase your dose. When you go in there, and you've had a bunch of bio 10 and your your number looks a lot lower than it is, they're they're not going to change your dose.

Scott Benner 1:09:58
You are a font of information.

Liz 1:09:59
Yeah, look at you right. Why did I have to do my own research? Scott, I don't know,

Scott Benner 1:10:04
but at least you did it. This is awesome. Seriously, you should put together a little like a bullet. Listen, you don't have the outlet for this, but if you put a bulleted list together of the things that you figured out, I would absolutely like put them out for people to look at.

Liz 1:10:18
Yeah, I'll do that. I'll do that for sure. 1,000,000% Yeah, I don't know. I just, I feel like there is lots of valuable information that should have been presented. No, for sure.

Scott Benner 1:10:32
Listen, I have a I have a dream where eventually we can, like, go into people's I always have this, like, dream of like, can you imagine if you took a very smart entity and let it just watch the Facebook group and come up with ideas about, like, what are the questions people have? What are the answers to those questions? What are complaints people have? What end up being the answers to those questions, like, that kind of stuff. So you could just these communities are awesome, right? But it's still sort of, I ask a question, I get my answer, I go away. I hopefully I'm better off. And now my question, my answer, disappear. They go off into the ether, right? Which is what keeps it's also important, by the way, because it keeps the group functioning, and, like, you know, current so that new people can come in, it is actually really important. But, you know, I just, I look forward to the day when, like, I, you know, I think I said this in the first interview that nobody's gonna hear. But I just, I look forward to the day where we're all just talking to our computer and making sure that it knows everything about us, so that it can say, Well, have you considered this? Because it can actually keep all this stuff straight, you know, like, you're keeping it straight in your head as best you can, and you're doing an awesome job. And still it's, it's still storyteller ish when you're telling it, like, oh, then this happened, I forgot to mention this, oh, biotin. Like, you know what I mean? Like, what I want is, hey, computer, I'm going to get my blood draw two days from now, or, you know, two weeks from now, for my thyroid. What are the things I'm supposed to be doing? Well, stop taking your multivitamin, you know, don't eat eggs this week. Like, blah, blah, blah, because you're having symptoms, and we don't want the doctor to see a false number. We want your medication to get adjusted correctly. Okay, great, right? You know, the

Liz 1:12:16
other thing that I had no idea, and again, this was just like when I was going over my notes last night on an article that I had read, but I missed this, this tab of it, so they're saying so people with type one that have hypothyroidism, so they have a lower absorption of glucose, like their body has, like, a lower ability To absorb glucose, and so there's also, like, lower hepatic glucose uptake, lower post absorptive glycemia. That's

Scott Benner 1:12:49
now you're just making stuff up, but I know I'm

Liz 1:12:50
just making words up, and you need a lower insulin dose in diabetic patients, and then you need to raise your insulin dose after you start replacement therapy? I never knew that. I didn't, you know, I always thought like, why are my husband and son, like so prone to hypoglycemic events? You know, I'm thinking it's because I'm bad at managing diabetes. Well, maybe it's because he has Hashimotos and his body doesn't absorb glucose as much as he should. Or maybe when he has a an increase in his his Synthroid, I need to his ratios a little bit because maybe now he can have a little bit more insulin. I never thought of the correlation between the two diseases, but it makes so much sense that they're so closely related. Yeah,

Scott Benner 1:13:39
and in fairness, even, you know, for me, like, if you've listened to the Pro Tip series, at some point in there, you'll hear either I or Jenny say that a, you know, an ill, managed thyroid issue is going to impact your insulin use. But we don't go into deep, like, you know, like deep conversation about it. But it's absolutely true, you know. And not a thing again, that people think about, I think,

Liz 1:14:01
yeah, it's interesting, yeah? I just, yeah, I thought that was it is. I thought that was very interesting. And especially about the, you know, like, so that's, like, your the hepatic glucose uptake. That's what I assume they're talking about, like, the the glycogen stores,

Scott Benner 1:14:16
right? Yeah, well, I mean, we need to get someone on this. It's not you, by the way, like, You're doing a great job, but like, why isn't somebody digging into this and making this information that's easily digestible, that's shareable, that, you know, everyone shouldn't have to get to the point where they're like, oh my god, I think I'm gonna die. I gotta figure something out for myself. Like, that's, that's, you mentioned it earlier, but it's what, it's exactly what up like, You got to this point, probably because you love all the people that this stuff is happening to, you had a bunch of time on your hands, and you were like, you know, like, I gotta figure out what's happening to these people. But for most people, they're just gonna struggle through their lives. And like you said, struggling can look like a lot of things. Could just be like a what comes off looking like a bad attitude, right? Or brain. Bog, or I'm tired all the time, and how that impacts your life and what you don't do, or, or, how about, like, you know, Gastro issues. Like, oh, I'd like to go to the city and see a play, but I What if I can't find a bathroom? Like, like, you know, I mean, like, all the different things that happen to the point where, you know, their families, though, that'll go generations telling stories to each other, like, Oh, we've just got a weak stomach, you know? Or, you know, like, I heard a one one family say all the time, it's so coarse, but like, they're like, this person, like, came into this family, right? And one day just said, you guys talk about a lot, but when you look at the family, there's a lot of auto immune through them. Like, wouldn't it be cool if they didn't have to talk about a lot? Like, you know what? I mean, like, like, Wouldn't it be cool if your daughter didn't need to go to, like, you know, take two days off to recover from a day of activity. And if there was an answer, if it and, Jesus what? If it was low dose naltrexone, or, you know, what, if it was getting the thyroid balanced out better. Like, like, these, yeah, things that look like, I think these things that people spend their lives thinking, well, this is just my lot in life, like, I wonder if they couldn't be helped,

Liz 1:16:07
yeah, or, you know, it didn't. It didn't turn out that way for my son. But somebody else could be allergic to their their synth, right? Or their level of fillers, you know, because they also are allergic to grass, and they can't have, you know, and they should maybe just try another thyroid Med, exactly.

Scott Benner 1:16:23
And also, like, Listen, if you don't make yourself crazy or kill yourself, you might still figure out what's wrong with your son. Because it doesn't sound to me like you're gonna stop, yeah,

Liz 1:16:32
and I feel like, you know, he's been, he's been collecting, he's been collecting allergies his whole life. And I don't think I feel like I just can't sit back and relax. And you talk about that whiteboard you have in your office, I feel like I have a whiteboard in my brain, and I'm always making notes of things that are happening with him and what else could potentially like. I can't remember what it Yeah,

Scott Benner 1:16:55
seriously, take time for yourself. But I think it's I think it's great. It shows an immense amount of concern and thought and love, and I'm sure he'll appreciate it one day if he doesn't. Now I but I want to, we're a little long here, so I'm going to end by telling you that I really appreciate all the effort you put into all this. Thank you. No, no, I'm no one else is interested. I'm, I'm supremely interested in this,

Liz 1:17:18
and I knew you would be interested in the bipolar connection, because I was like, Oh, I have to tell Scott about that. No,

Scott Benner 1:17:24
all of that I'm interested in. And again, this was said in the previous recording that nobody's going to hear. But I shared with you that I take a fair amount of crap from people with type one who don't have other issues, who are like, you know, this guy talks about thyroid too much. And I'm like, I mean, and you brought up back when I said that, you said, what was the number? How many in 10 people with type one also have thyroid issues? Yeah,

Liz 1:17:49
17 to 30% of people with type one have autoimmune thyroid,

Scott Benner 1:17:53
right? So that's worth talking about in a group of people who have type one

Liz 1:17:58
for the diogene polymorphism. Morphism that also is quite common in like the general population. So it said that it occurs in 12 to 36% of the population. So that's huge as well. So it's not a wild question to ask your your Endo, you know, like, if your insurance is going to cover genetic testing, or, if you want to, you know, pay for the sequencing yourself. Like, I feel like it's worth it to know, you know, if, if you're one of those people that you know this is, this is like a real reason that I need. I need an additional three

Scott Benner 1:18:35
and one day, and probably not in our lifetime. But who knows them? AI's going quickly, but like, you're just basically talking about biohacking. You're talking about getting, getting your personal settings correct, you know, with chemicals and etc. I don't know, we all grew up with like, a, like, a, I don't know, an uncle who was a dick or something like that. Like, imagine if he wasn't, like, you know what I mean, like, imagine if your uncle wasn't a dick. What if his ferritin was low because his blah, blah, blah didn't uptake t3 but like, you know what I mean? Like, that's unfair for him to live his life that way. And I don't know, like, I know that's difficult. It's harder. It's, you know, it's easier said than done to figure these things out, but at least if people know to look for them, and doctors don't stand in their way when they're looking for them, insurance doesn't stand in their way. Like, maybe you get to go live the life you're supposed to live instead of the water. And, you know, like,

Liz 1:19:22
especially with people with with bipolar, like this one article was saying it, it speculates that bipolar disorder is a form of cerebral hypothyroidism. This one article was they were had great success with giving people with bipolar, it was like, actually a high dose of levothyroxine, and that was helping these people, like putting these people in remission from their bipolar. Because one theory is that people with bipolar, it's because they can't convert the the free t4 to t3, yeah. So. And we have, we have a friend that is, is going through that like, you know, he has, he thinks he has bipolar and, and it breaks my heart, you know, like looking at all this information, you know, and there's so much stigma with mental illness and, but maybe bipolar is not a mental maybe it shouldn't be classified as a mental illness. It should be classified as a, you know, like you, like an autoimmune disease. And there's, if there's just something like not converting in someone or, you know, they're it's an inflammation thing, you know? And it's,

Scott Benner 1:20:31
I, I'm with you. I, I'm telling you right now. I don't know much, you know what I mean, like, and you could look at my, my educational background, and say, I don't know why we're listening to this guy, but I've just had 1000s of conversations with people, and I don't know it was a few years ago, I was like, Why does everyone with type one? When I asked them about other autoimmune diseases, why does so many of them get to an uncle with bipolar? That just can't be a coincidence,

Liz 1:20:55
right? Yeah, so what I what I think is the link is, I don't think it's the type one bipolar link. I think it's the people that have maybe undiagnosed Hashimotos and maybe this variant, yeah, you know, it's like, it's the hush, it's the it's the thyroid connection, rather than the type one, like, type one is connected to thyroid, and thyroid is connected to bipolar, maybe. So I think everybody, yeah, everybody should get their auto like, their antibodies tested. Yep,

Scott Benner 1:21:22
I appreciate this very much. It's a high likelihood that you'll be back on the podcast one day, but let me thank you, as if I'm never going to talk to you again. I really do appreciate

Liz 1:21:31
this. Thanks. Thank you so much. Scott.

Scott Benner 1:21:33
No, sir, will you please send me all the links and your notes and everything. Would you do

Liz 1:21:37
that? Yeah, yeah, I apologize in advance for my scribbles. No, I'm telling you, you have

Scott Benner 1:21:41
no idea. You drop an AI and you say, transcribe this, and it just writes it out. It's awesome. I don't know what you people aren't doing out there, but it just works so well for some things. It, by the way, it doesn't work well for other things. But when you find what it works well for, pretty awesome. Let me let you go. Hold on one second.

Liz 1:21:58
Okay. Thanks so much, Scott.

Scott Benner 1:22:06
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 longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at Juicebox podcast.com to us, med and all of the sponsors. Today's episode of The Juicebox Podcast is sponsored by the Eversense 365 you can experience the Eversense 365 CGM system for as low as $199 for a full year visit ever since cgm.com/juice box for more details and eligibility, if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bold beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginning series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698 in your podcast player, or you can go to Juicebox podcast.com and click on bold beginnings in the menu. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording, wrongwayrecording.com. You.

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