#1691 Autumn Needs an Answer - Part 2
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Autumn, diagnosed type 1 at 13, discovers after 31 years she’s MODY. We unpack misdiagnosis, GLP-1s, insurance roadblocks, self-advocacy, and how one podcast episode changed her entire life. Part 2 of 2.
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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 to another episode of The Juicebox podcast.
Autumn 0:15
Good morning. My name is Autumn. I am a 44 year old female who was diagnosed with type one diabetes in 1994 at the age of 13.
Scott Benner 0:26
This is part two of a two part episode. Go look at the title if you don't recognize it. You haven't heard part one yet. It's probably the episode right before this in your podcast player, when I created the defining diabetes series, I pictured a dictionary in my mind to help you understand key terms that shape type one diabetes management. Along with Jenny Smith, who, of course, is an experienced diabetes educator, we break down concepts like basal, time and range, insulin on board and much more. This series must have 70 short episodes in it. We have to take the jargon out of the jargon so that you can focus on what really matters, living confidently and staying healthy. You can't do these things if you don't know what they mean. Go get your diabetes to find Juicebox podcast.com, go up in the menu and click on series. Please don't forget that nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. Just in time for the holidays, cozy Earth is back with a great offer for Juicebox podcast listeners. That's right, Black Friday has come early at cozy earth.com and right now you can stack my code Juicebox on top of their site wide sale, giving you up to 40% off in savings. These deals will not last, so start your holiday shopping today by going to cozy earth.com and using the offer code Juicebox at checkout. This episode of The Juicebox podcast is sponsored by us, med, us. Med.com/juicebox, or call 888-721-1514, get your supplies the same way we do from us. Med, the episode you're about to listen to is sponsored by tandem Moby, the impressively small insulin pump. Tandem. Moby features tandems newest algorithm control, iq plus technology, it's designed for greater discretion, more freedom and improved time and range. Learn more and get started today at tandem diabetes.com/juicebox,
Autumn 2:31
I went through a total identity crisis, and when all of this was happening to me, I'm like, well, if I'm not type one, what am I like? What do you mean? Like, I have all of this medical history, and it just fits right here. And you know, he, he was with me through all of it. I honestly didn't start to share my story until this year, until I got the answer. Nobody in my family knew this was happening, other than my husband and a very, very close friend, no kidding, yeah. And part of it was, you know, candidly, that the societal criticisms of, oh, you're using a GLP, Well, no wonder that's why you lost weight, or no wonder that's why you feel better. And it's like I struggled with my identity, and then also with the fear that you you mentioned for people, where it's like, you want me to take my insulin pump off, but what do you mean? You how? But then it was like, I had to listen to that, you know, little inner voice that you have that's like, what do you have to lose? You take the insulin pump off. You get sick. Okay, put the damn thing back on. But if you don't try, how will you know? And I don't ever want to live my life thinking I should have, could have, would have, type thing like, no regrets. So here we are.
Scott Benner 3:42
Well, I mean, the doctor tells you to do it, you easily could have just put it back on again. Like, it's not sure, yeah. I mean, you didn't have to sit there and just slowly die over the next couple of days, right? Right? Like, yeah, you could pay attention to what was going on. I mean, you were doing it with the doctors overseeing it sounds like you did it the right way. And, yeah, for sure. And I think that Moreover, don't be just happy sitting there and withering or being sick all the time like try something. The examples are endless. I interviewed a woman yesterday who clearly has thyroid issues, and her TSH, in my mind, is elevated, and her doctor's mind isn't. And she's 10 years at it, 10 years just suffering along. And when I said to her, why don't you try the medication, she goes, Well, the the numbers, right? I'm like, Yeah, but that shouldn't make any sense. And meanwhile, she's telling a story about how she's advocating for her kid, but not for herself. And like, you know what? I'm just like, this happens constantly with people forever, and you know, at some point, you either get to a doctor who understands the bigger picture, or you get to a doctor who says, Hey, I'm sorry, but the thing in the box says, No, so you don't get it right,
Autumn 4:50
right? Well, and like how I mentioned earlier, thankfully, my mom taught me a long time ago to advocate for myself, because I can remember going to endocrinologist that they would just dismiss me. Or, you know? Well, this is what it was. I'm like, You know what? You're fired. I'm going to go find an endocrinologist that works for me. I'm going to find somebody that listens to what's going on, and they're not just looking at, you know what? The their again, their checklist says, Okay, this is how we treat this symptom. This is how we take care of that ailment. Like no health care has to be personalized to the individual's needs. And I don't give a rat's ass what your book says, or how many years you went to school. Yeah, I know how I feel right now. And I've never felt this good in my entire
Scott Benner 5:28
life. Tell people what your weight was when you started what it is now.
Autumn 5:33
Gosh, it was 238 at that initial appointment back in November of 2022 and right now I weigh 160 Wow. Good for you. And, like, seriously, the last 40 pounds, as soon as I took that insulin pump off, it just came off like water. And I can't even tell you how mind blowing that was for me, you know, like I had said that identity crisis, I also spent a little bit of time, like angry, like, mad. Like, how could I have been? I just felt like it was a disservice by the healthcare system to
Scott Benner 6:08
gone that long. Yeah, tell me more about that please. Yeah,
Autumn 6:10
I just because, you know, I think back to that endocrinologist, and I'm like, hey, something doesn't seem right. I'm using all this insulin, and it's like, you're type one, it's in your head. You need to get over it. Like, really? Like, how, how is that? Or, you know, I had even gone to her before, like, how do you even know I'm a type one diabetic? And it always went back to, well, it's in your head, or it's just because you've been diabetic so long, and all of these things. Like, I feel like I got robbed of the prime of my life, like times when I wouldn't want to play with my son because I didn't feel good, or because I was, you know, just just tired, exhausted, fatigued, because I just wasn't healthy. And, you know, now I look back and like, I could have had more kids, Scott, yeah, and I didn't, because of, you know, the doctor, oh, your diabetes. It's like, okay,
Scott Benner 7:04
then I guess that's not, not what's supposed to happen for me. And now it's and now it's gone. Like, I'm not trying to make you upset, but that it's over, like, that part passed, yeah, yeah, my wife and I went out the other day. It was Friday night, so we worked all day. And I mean, this is kind of boring, but, like she she travels for work a lot, and so she wanted to get Global Entry on her passport so she wouldn't have to stand in line coming back from other countries. But she had to make an appointment at the airport at 8pm on a Friday night to finish the process. And we drove about an hour, and we decided to do some shopping at this place that's near the airport that we don't get to very often. Let me just say what it is, because I think it adds levity. I really love IKEA's dish brushes for this for the kitchen. They're $2.99 They're awesome. Okay, it's black. It has a suction cup on the end. Buy them. They're absolutely awesome. Okay, and I've been using mine way too long, because I don't want to drive an hour towards the airport to buy a brush and but as soon as she said, I have to go to the airport, I was like, Oh my god. Can we go? Like, right? I was like, I need a dish brush and so, so we, we left early. Now this is the end of a day. Do you understand what I'm saying? Like, I like, I've been, I've been I'm old, I've been up, I've been working, I've been thinking, I've been talking, I've been sitting in this room, I've been typing, I've been letting people online yell at me. I've been helping. Like, you know, I've been I had a full day already. I drove an hour in traffic on the New Jersey Turnpike. If you've never been here, you don't know what I'm talking about. It ain't great. Okay, we walked around IKEA for a while. Because you're there, what are you gonna do? You go look at the hernkum burger and stuff like that. You see what else they got. And like we did the whole walk, I bought, I bought seven dish brushes, like
Autumn 9:00
you're not going back to that airport for a while.
Scott Benner 9:02
I was trying to minimize my travel, and so I spent the 14 and and then we went over to the Newark Airport, if you've ever been there, also not awesome. And eight o'clock, she has her meeting. She does her thing. We get done. She's like, are you hungry? I said, Man, I am a little hungry. Ted. I don't think I've eaten much today. I think I should eat. We drove all the way home, another hour through traffic, went to a restaurant, sat and ate, did all this stuff. It's like 1030 at night now, and we're sitting there and we're talking, and I said to her, I don't think we could have done this before the GLP medication. And she's like, what? I'm like, You really think we could have worked a whole week and then a whole Friday and then gone out and walked around for an hour and a half and then run across and then still, gone to dinner and been sitting here and talking to each other as bright eyed as we are right now. And I know people will be like, Well, yeah, you lost weight. Okay, like, I'm not gonna argue with that at all. But. So I'm telling you that without that, whatever the hell is in that stuff, and that really is I whatever GLP is, whatever that I don't even know and I don't care and like, but whatever it is, I think it has fundamentally changed how my body works. Absolutely, yeah, yes. I don't know how to quantify it, really, but I can tell you for sure that I wouldn't have done any of the things on Friday that I did. And then I started thinking about all the times that we'd walk around somewhere because Kelly be like, hey, you know, we need a chair, or we need then she'd take me out, and I'd walk around thinking the whole time like, I hate this, like I can't wait to get home. I'm so tired, I like and I don't realize I never going to be able to honestly quantify how much I was probably lying to myself about what my appearance meant to me in public. Sure, like, because I'll like, I'm you're going to hear me on this recording and in my personal life, I don't care what people think of me. I'm not my body, I'm my thoughts. And I really do believe all that, but I still believe, the farther I go forward, the GLP, that that's not completely accurate, because I saw a photo of myself the other day that somebody took candidly, and I thought, I'm okay if people see that. And before, I would have been like, Hey, can you delete that please? Like, you know what I mean, like, like, it was just at a weird angle and everything, and I didn't even care. And then I started doing the rest of the math. Like, I wonder what I didn't do with my kids or my wife or with my life, because I was belt held back by the amount of energy I had, or you talked about your elimination. I had that problem too, right? Like I didn't eliminate? Well, my iron was low all the time. My iron is not low anymore. That had its own impacts. Blah, blah, blah, blah, blah, and I'm going to go back to what I said earlier. I don't think we know where we're at with this medication yet, or what it's doing for people. And I'm happy to say because you brought it up, the pressure of knowing that if you tell somebody you're doing this, that some person who doesn't have the benefit of all this information and all this perspective and all these experiences is just going to go like, Oh yeah, you cheated and took that medicine. This episode is sponsored by tandem Diabetes Care, and today I'm going to tell you about tandems, newest pumping algorithm, the tandem mobi system with control iq plus technology features auto Bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. 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Autumn 14:25
Yeah, yeah. And like little do they know how much freaking work it is actually to take that medication, especially it's like you're titrating the dose up. And you don't always feel the greatest when that happens. But then you you have to change so many things about your life, the way that you eat, your relationship with food. I mean, the food noise completely gone after starting that medication was like a complete game changer in my life, like on top of all of the wins and the discoveries with my diabetes like that going away like, holy smokes. Anybody that wants. This medicine that their body can tolerate it, in my opinion, should be given to them freely, just like you could get birth control for free at a health
Scott Benner 15:06
department. Isn't it funny how we've sat around see older people are going to know this, younger people aren't going to know it as well. But I grew up through a time where people just sat back and they ruminated. They're like, one day science is going to find a way to stop this epidemic that we have of people's weight. I grew up through a media that talked about that it's gonna happen. We're gonna figure it out. And then, by the way, this all connects, whether it's the vaccine story I told about the online thing or the person telling me not to do the thing, this all connects. If you're not paying it, got to pay attention, okay? But like, back there the it's gonna happen. We're gonna fix it, we're gonna we're gonna move forward. We're gonna find better ways. And then we did that as a society, and then everyone just moved the goal post when you're a cheater, like, oh my god, you motherfckers. Like, like, it took some dork in a lab 30 years to figure this out, and he figured it out. And your hot take on it was, oh, you're gonna cheat like that. For the last 30 years, you've been saying, no matter how much I diet and exercise, nothing's working for me. The food's not right. Monsanto sprayed something on my corn. You guys have 1000 different reasons why you're being held down by something, and someone figures out your way around it, and then you become the thing holding the person down. Oh, my God, you're all stupid. Sometimes, me too, by the way, we're all stupid sometimes. But like, it's crazy, how it like, it's that goal post moving. Yeah, it's like, not good enough. You didn't do it good enough. But I tell you about before we started recording here, I got two people ranting and rave at me on Instagram. I can't believe you're using Instagram images. Do you know how much electricity that uses? Well, guess what? I didn't know how much electricity it used, so I looked it up, and then you know what else? I looked up how much electricity Instagram uses. Turns out the person who used Instagram to yell at me used way more electricity than I did to make the picture. And I was just like, none of us are perfect. That's all I came down to. Like, there is no perfect way to get through life. Like, so if you think railing about me using an AI image is a good use of your time, then God bless you. Like, go for it, right? And if you think yelling at poor autumn here for cheating is a good use of your time, and go for it, but she's off living a better life while you're busy telling her what she's doing wrong, right? And you
Autumn 17:30
know, what that person can do, they can grade off.
Scott Benner 17:35
But at the same time, like, that's, you know, in my personal life, like I explained to you earlier, like, you know, the way I responded to the person on Instagram, I was like, well, listen, I'm doing my best here, and I'm trying to I really do mean all that, and it's all, it's all sincere, but if it was just me in a room with them, I would 100% say, oh, you should go yourself and like, because I am like, I've said this before on the podcast, so I don't want to belabor it, but like, because it's not an apples to apples comparison. But every time something like this happens, I think of the line from and I can never remember the name of the movie, and you reminded me of it. The name of the movie is, oh, a few good men. Few Good Men. Where, at the end the bad, I mean, he's a bad guy, like, I'm not the, not the bad guy in this, but the way he feels, I understand, where he just says, at one point, like, I appreciate it, if you would just say thank you and move on. And it's the feeling that he has that, like I am out here putting my whole effort into something, I'm doing it for you, and you're over here telling me how I'm doing it wrong. And you know, in that scenario, in the movie, again, my analogy doesn't hold up, because he's actually doing something wrong, but like, but the way he felt, I can seriously dig into this deeper, the way he felt. From his perspective, he doesn't see it that way, and like, and that's the thing that you all need to understand about this, is that let's just for a second, just put ourselves in an alternate universe where Autumn's use of a GLP is wrong. She doesn't feel that way. She's having a different experience than you're having. So yelling at her that she's doing it wrong, even if she is doing it wrong, is not an answer to the bigger issue. Right and and I'm here to tell you I don't think you did anything wrong. I don't think I did anything wrong. I'm telling you that modern medicine came up with a way for me not to have low iron, not go to the bathroom on any particular schedule, be carrying fat in places that I don't understand, being tired all the time, you know, not being able to be myself in my own mind because I'm cloudy and all the other things we all run around all the time, inflammation. We got to get rid of it. We got to get rid of it. Somebody came up a way to get rid of it. And they went, Oh, you can't do that. God damn it. And then, oh, my god, autumn. You know what just happened there? I said, God damn it. Now some people are gonna send me an email and say, Oh, I love this podcast, but then use the Lord's name in vain, and I can't listen anymore. Y'all got to stop setting up guardrails and rules about how we can all. Talk to each other where no one's gonna say anything, and Autumn's not gonna find out that she could have been healthier. I've made my point now, autumn, tell the rest of your story. Thank you. Diabetes comes with a lot of things to remember, so it's nice when someone takes something off of your plate. US med has done that for us. When it's time for Arden supplies to be refreshed. We get an email rolls up and in your inbox says, Hi, Arden. This is your friendly reorder email from us. Med. You open up the email. It's a big button that says, Click here to reorder, and you're done. Finally, somebody taking away a responsibility instead of adding one us. Med has done that for us, an email arrives, we click on a link, and the next thing you know, your products are at the front door. That simple, us, med.com/juicebox, or call, 888-721-1514, I never have to wonder if Arden has enough supplies. I click on one link, I open up a box, I put the stuff in the drawer, and we're done. Us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and the Dexcom g7 they accept Medicare nationwide over 800 private insurers, and all you have to do to get started is called 888-721-1514, or go to my link, us, med.com/juicebox, using that number or my link helps to support the production of the Juicebox podcast.
Autumn 21:35
I just, you know I really, really enjoy you, but you're a great, great, great, great guy. There's no doubt about
Scott Benner 21:41
that Autumn, I'm awesome. That's not why we're here.
Autumn 21:45
You did say something there, though about that, that experience with your wife at the airport and like the medication giving you the energy to be able to do that. But it just made me think, especially about the photo piece with I think about from the time I started on my insulin pump. Because that's the other thing I didn't mention before. I started on the insulin pump. Like, I never had a weight problem. I mean, I'm five nine. I've always weighed between, like, 161 70, and it was like, I put that insulin pump on and Damn, did that weight come? And it came for me, and it was, like, 30 pounds within a matter of, I don't know, two, three months and like, What in the hell is going on? Like, I eat healthy. I barely eat carbs. Like, why am I using all of this insulin? There are so few photos of me with my family, with my son, with my husband. And, of course, the ones that we do have, you know, I had to make sure that they they were okay. Like, okay. I don't look like a complete cow in that picture. Like, yep, we can share that one kind of thing. And now I'm over here where people will, oh, my God, you look really great. And I'm almost like, I don't, I don't want you to, I don't want to talk about it, because I want to skirt over the fact that, how did I get here? Because I don't want to deal with their judgments or their their bullshit when it comes to, you know, what they think I should have done with my life, but I do know that that medication led me to one removing the pump, to finding out that I'm a type two diabetic, that it's actually Modi for the 1% of the 1% and I told my husband, we met me like I'm a special unicorn. Not sure if you're aware of that, but
Scott Benner 23:17
this test actually proved it for Yeah, you didn't realize how right you are right.
Autumn 23:21
I know right, right, but it's just like, people are nicer to you when you don't wait when you're not overweight. I didn't realize that before, because I just try to be nice to everybody. Like, I'm a big advocate of, like, human kindness, regardless of what's going on. Like, just be kind to people. I've had more people offer to help me. Like, I'm at the gas station with a flat tire, just a random guy, like, Hey, do you need any help? And I'm like, Are you talking to me? Like, why are you trying to help me? That would have never happened, you know, 80 pounds ago. I'm sorry. It just would not have happened.
Scott Benner 23:51
That's crazy. Yeah, I don't this. I don't, I don't imagine you're wrong. I just it's, it really is insane. I do feel the same like I don't. I wouldn't understand treating somebody differently for how they appear, but also maybe I have a perspective of a person who appeared that way, so at some point, yeah, I wouldn't have judged myself for it. So maybe I wouldn't have judged other people for it.
Autumn 24:13
It's like, that's the thing, like, I guess I just, I don't know, let people be who they are, let them do what they do. And you know, sharing stories helps. I mean, that's part of how we get through society, is by sharing our stories and by learning from each other. And when you want to shut it down because you don't agree with me, like you don't have to agree with me, that's fine, but it's still my reality. I'm still going to share the fact that this is how I got here to this new diagnosis and this new life where, you know, I feel great and I have energy and I want to do things, and, you know, I'm not trying to nap constantly because I'm exhausted all the time. Yeah, I
Scott Benner 24:44
also think it's important to like, you know, another thing that people used to talk about when I was younger, before the world got so complicated, is that, you know, people learn as they go, and you don't judge them on what they thought before, you praise them for what they figured out. Right? And so, you know, because there's a certain, I can hear people in my mind like there's a certain, by the way, that's not because I'm schizophrenic. I just, I know what's gonna happen. I can hear people saying, Oh, sure, well, he used to think this, but now he says this. He's a hypocrite. I'm not a hypocrite. I'm a human being who learns something, and now I'm continuing to share. And by the way, if you would have gone back 10 years ago and heard me say something. I probably say it more clearly now, but if I hadn't said it, then I wouldn't know how to say it more clearly now, you have to let the process. You have to trust the process of being alive and learning and growing and and not not want to hold people accountable for things that they thought or did in the past that they understand are different now, this happens to everybody. Yeah, it's not. It's not a thing that happens to just bad people, or people were dumb and then they weren't. Or like it's it's happening, if you think that it's happening to you right now and you don't know it, because 10 years from now, you'll look back on this moment ago, I shouldn't have judged those people that way, and by then it's too late, because you already ran around telling people they cheated or they're bad, or, you know, blah, blah, blah, blah, blah, like, whatever it is that you thought you were fixing the world with today. That's not how I'm going to say this over and over again. I say it in the Facebook group all the time. Telling people they're wrong is not a good way to get them to know they're wrong. Like, that's not how you do it. They say something. And maybe you have a different perspective. Maybe you're a little older, a little wiser. Maybe you've been through another thing that they haven't been through yet. Maybe you've just seen a part of the path they haven't seen yet. You just share your perspective with them, and one day they'll see it. It's not going to be that day. It's not going to be that moment in my life. I have never disagreed with somebody and talked them out of it, but you could give them ideas and walk away and let them go live their life and see if it doesn't come back around for them in a way that makes them figure it out right? Exactly? Yeah, I told on them before we started today. I think I told you about like the the emails I get emails sometimes from people, and they, they, they tell me how awful I am, and then, and then a lot of them will write back six months a year later. Some of them don't go to the trouble of telling me how awful I am. Some, some of them just write the second email. And I got one of those the other day, and I mentioned it the other day. I won't say the person's name again, but I again, but I thank the person because they started listening and really didn't like me for a number of different reasons. They hated me, but persevered, kept listening, and now are doing really well, and they took the time to write an email to apologize for a thing that I didn't even know they were doing, which I found to be incredibly kind. Yeah, and I'm not saying that. I'm always right, and you'll figure it out one day. I'm saying that some of the things you hear you don't intersect with, well at some points, and then maybe later, when you have more information, you'll intersect with it differently. And that isn't to say that some of you just don't hate me and not and have really good, great reasons for it. I'm sure you do right on like, you know what I mean? Like, I there are people I don't like to I don't know what to tell you, and I don't have the time or the inclination to figure out why, but in the light of what's going on in the world right now, as a person who makes content, I'd like to point out to you that it's incredibly unhealthy. If you keep listening to me and you don't like me, you should really stop. Yeah,
Autumn 28:31
but scroll past, yeah. Keep
Scott Benner 28:34
moving right. Think of me as something you can scroll past and and head off, although, let me say this, you know, again, as a timestamp, I am not an avatar. I'm a real person, okay, like you ranting and raving about me, or, you know, showing up somewhere where I am, which hasn't happened to me gleefully, but is happening to other people. And like you're not down voting me on Reddit, right? I'm not a thing you disagree with that you get to put a check mark on, or a thumbs up or a thumbs down or a sad face on. I'm an actual person, and if you don't know that, I mean, I'm not a person who just randomly says, Go touch grass. But you probably should put your device down for five seconds because, yeah, because I am not a pretend thing on the other side of your screen. And you're not either, by the way. And if we intersect in real in the real world, one day, your misunderstanding of what it is when you think of somebody digitally, but then meet them personally, most people just, you know, say, Hey, what's up? But every once in a while, a person who's too far down a path does something crazy, and it's not man, it's not cool, and all that's going to lead to is people not sharing their perspectives and stories not being told, and people not taking a lifetime to learn and move forward and coming to a better decision. And we're not going to move forward if you stop people from talking absolutely and I think that a part of that is to see that I'm not I'm not an avatar, I'm an actual person. I'm not always right, I'm not always wrong. You're not always going to agree with me. Sometimes I'm going to be doing things you don't understand, and sometimes I'm going to be doing things I don't understand. So, yeah, I don't know what the answer is, other than be nice and keep your hands to yourself. Yeah,
Autumn 30:29
exactly. Just be kind. Yeah, keep your hands to yourself and be kind. That's all we got.
Scott Benner 30:34
You know, all the stuff you tell a five year old, like, just do that. Anyway. What have you not talked about that you wanted to although this episode, I love this episode,
Autumn 30:45
so I'm glad, I'm glad. I am so thankful to be able to share this story. You know, for me personally, next steps, like I mentioned, I'm going to meet with my endocrinologist from the University of Michigan atypical Diabetes Program this coming Monday, and we're going to hash out that sulfur Ariana, probably not saying that 100% correctly, but it's close enough. And essentially, you know, the medication, it allows your pancreas to secrete more insulin. You know that the mixed message, kind of from the two doctors in the same department, one saying you make enough insulin your body doesn't secrete. The other one saying, Hey, I'm concerned, if we, you know, put you on this medication, it's going to push all the B cells that you do have left that are healthy, and you might end up back on insulin. And for me, I'm not scared of that, Scott, because I took insulin for 31 years. We're still taking insulin.
Scott Benner 31:35
You're willing to try it like that's yes, it occurs to me, while you're talking, that you're not likely to find one doctor that has all the answers. You're likely to find a few people that understand certain parts of this, and then you're going to conduct a science experiment on yourself and try to figure it out. And you're telling me that that's better than living the way you did before.
Autumn 31:54
Absolutely, yeah, absolutely. There's no doubt. And you know, the other piece that I'm really excited about is both my parents are still living and they are going to have their genetic testing done so that hopefully we can help more people, you know, with Modi and figuring out, you know, early diagnosis, so that there are children in the world that don't spend the 31 years on an insulin pump when they never really even needed the medication in the first place. So I'm excited. It's kind of like my pay it forward, I guess, like, I want to give back in a way, and lovely, and if that means you throw me in a lab and do all the tests and sign me up because I, again, I have nothing to lose, and helping somebody else is really my goal at the end of
Scott Benner 32:32
the day. That's lovely. That really is great. I will tell you this. I used to make ads for Jibo hypo pen, and I might again in the future, but I don't at the moment, but when I started making them, I had to say, sulfano Uriah, and there you go. I don't know what I was saying, but they would send back the audio and go, you're not saying that correctly. And so I wish I would have recorded it, because I basically sat here. They sent me a clip of it being said correctly, and I would like, sit here with my eyes closed, hit play the clip. Would say, so final urea. I'd go, so final urea. And then it was just, it was just me going, so, final urea. So final urea. So until it felt like it flowed, because I had to say it in a sentence, and I couldn't stop to think about it while I was saying it, because it needed to flow out and sound like it's not the first time I had heard the word right, and I got it all done. I was super excited. I sent it back to him. They're like, you're
Autumn 33:27
not saying it right, okay. But
Scott Benner 33:29
anyway, I don't know if I'm saying it right now or not, but definitely don't judge yourself on it, because Scott spent two hours on it and he's not sure.
Autumn 33:38
Listen, I'll be candid when the doctor first said it to me. I'm like, is sulfur Uranus? What do you what? I have no idea what you're talking about. And then I couldn't pronounce it, so that's what I would refer to. It to my husband, like, you know, the sulfur Uranus medication they want you to me to try. And he's like, is it really what it's called? Like, no butcher the way that it said. And this helps me remember, so
Scott Benner 33:57
you gotta do beating my hand on my thigh. Now, wondering, can we call this episode sulfur Uranus?
Autumn 34:04
I'm totally fine with that. Go for it. That was the piece. Sulfur Uranus. Here we go. Let's see if that's the next thing to change my life, other than everything I've gotten to this far.
Scott Benner 34:17
So I just imagine people listening, hearing your whole story, hearing me rant and rave, and thinking like, when does the part where you put the sulfur on your anus come in and
Autumn 34:30
that that will be, it'll be interesting to see how Monday goes. And then, you know, I'll shoot you an email to let you know the piece that that there is one other thing I wanted to it's, it's not about me. It's actually about my father. I had mentioned to you about him having that heart attack back in May, and he spent 18 days in the hospital, and he's type he's a type two diabetic. Can I tell you how disturbing it is the medical professionals in this hospital that have no clue how to treat diabetes? Days, whether it's type one, type two, they're giving this man insulin, crashing him, bringing him all the way up to 500 crashed him again. I'm like, can you stop? It got to the point where I just simply was like, we refuse the treatment. Like we can't do that. Mike, actually, I can. It's my right. We're refusing the treatment because you keep bringing him up, crashing him down. Just stop. We're telling you what he needs, and you don't want to listen, because it's not what your freaking book says. Take your book, throw it out the window and listen to what I'm telling you. Yeah, it's just, it's a shock to me how uneducated they are and how unwilling they are to listen.
Scott Benner 35:33
Yeah. I mean, I'm shocked by that pretty regularly, and at the same time, I've had enough conversations with people that I don't blame them the same way that I used to. Yeah, there's something about the process that of leading people to into that into that life, that doesn't allow them to, like, fully understand everything that they need to understand and the limits of humans in general. Like, you know, you can't, yeah, you're not. You're not a limitless, I, you know, thought machine, and then the pressure that goes with it, and, you know, the long shifts and so many people, and I'm sure the hospital is telling you to go faster and do this, and blah, blah. And, you know, like, there's just, I think it's like everything else. I think there's just too much to tackle. And, and may I also say autumn that I know that it's probably attractive to just blame something and say, well, it's the reason of this, but I don't think that's the case anymore. Like, I think it's possible that we've just been here so long, and society just has so many nooks and crannies, right? That this is what it looks like at this point. Like it's we can't, I don't know. It's like a bunch of extension cords wrapped around each other, like we're not going to be able to, like, untwist them all sure this is just how it works now. And would it be great if you could go back to simple and start over? Sounds simple, but it would eventually get convoluted again. And I don't know what the answer is going to be like. I'll tell you. Like, there is part of me that thinks that the answer is going to be, I know people will hate this, but like, the computers being able to, like, just sort through things and to take away the stuff that you can't possibly know and make it readily available so that you don't need to be able to access it through your, you know, the meat thing inside of your skull. Like, it'll actually somebody can just say to you, like, look, this is the real answer, because then your dad blood sugar doesn't get jerked around while he's in the hospital, right? Yeah. And
Autumn 37:45
I, I, I would agree with that piece. And I feel like, you know, there's just so many if I put myself in a medical professional shoes, and I went to school, I read this book. It tells me this is what I'm supposed to do. It goes back to that point of healthcare not being personalized, but also they're just doing what they were taught and what they think is right. And I don't think they're willing to take the risk just for the random guy laying in the hospital bed. You know what I mean? Like, they might be more willing to take the risk if it was their loved one, like I was willing to take the risk and advocate for my dad or advocate for myself. They have too much to lose. It's their livelihood. It's their license. I get those things, but it's so freaking frustrating. Of
Scott Benner 38:24
course, yes, terrible, yeah, you're just autumn. Like, like, there might be, like, look, I went to nursing school. I've been doing this for six years. I report to three doctors. This is a hospital I'm in. Like, you know what I mean? And you're telling me, I got to listen to autumn, right? You know, I don't know you. And so I take, I mean, I take their perspective. I understand where they're at, but it doesn't stop that thing is happening to your father, exactly, and it doesn't stop you, by the way, you know how you now have a new perspective, like you've leveled up your perspective, because you talked about wasted time. And I have that perspective from years ago, not through my own life, but through a conversation I've had that I've commented on here a number of times, somebody online just needed help. Like, back before, I had this kind of whole ecosystem really set up where, you know, you could go to the Facebook group somebody might help you. You can go find an episode that'll help you, like, it'll help you, like, it'll lead you to other ideas you can kind of get through it on your own. Like, it's a little more self service now than it used to be, sure, and right? So people used to say, like, Oh, that guy, Scott, could probably help you. And then somebody would message me, and then I'd get on the phone with them, which I know I've said in the past, is probably, like, the part of how the podcast got started. Because I was like, Oh, I talked to this person for an hour, and now they're okay, yeah. What if more people heard that? And so have this, you know, experience with a woman in her 40s, if I'm remembering correctly, she had a lot of kids, if I'm remembering correctly, but you guys have all heard me on here, and I think more than two is a lot, so I don't remember exactly how many she had, but she had a lot of kids and diabetes for over. Very long time, and I basically just chatted her up for 45 minutes or an hour, and didn't do anything different than I'm going to do it to touch by type one event on Saturday, like, I'm just going to stand up on a stage for an hour and be like, Hey, listen, diabetes. Here's how I think about it. Go off see if it helps you. And, you know, and I did that with her, and then she contacted me back a day or so later, and was thanking me, and this was all private. It wasn't on the podcast. And then she starts crying, and really crying, and all she could say was, Why did no one tell me this? I've been living this way for decades? Oh yes, yes. And that that lost, that feeling of Lost Time stuck with me so deeply when she was talking about it, when she was talking about like it's possible that my health has progressed to a place that I can't get it back again, and I have small children, and I lost all this time, and it was so overwhelming to her, she couldn't, almost, in the moment, enjoy the fact that she'd figured out the answer. And so I said to her, I'm like, Look, I don't know what. I don't know what to tell you here, other than to say, you know now, so just move forward, cross your fingers and try to enjoy your life, you know, like, because I don't, yeah, what else am I gonna say, really, but the conversation, I never forget her. I don't know her name, I don't know all of her details. I know that. I know the agony in her voice when she realized that there was an actual answer. She didn't have it, and the days and hours and weeks and months and years of her life had passed by that she won't get back again. That part really hit me, and it hit me just as hard when you said
Autumn 41:38
it too, like, that's the thing Scott like again. January 2022 is when I started listening to your podcast. And I had been diabetic for many, many years. At that point, I learned more from listening to your podcast about bumping and nudging, things I could do, about being bold with insulin, all of the tips and tricks that you put out there and like it was mind blowing to me to think like, why isn't this information more readily available? Why isn't there? You know, you get your little kit to go home with when you leave the hospital because you're diabetic now, but you know, where is the link to the podcast? To say, hey, this can help you. It doesn't mean that it's it's correct or it's going to work for you, but just listen, because there's things that you can apply to your specific situation. And I use those all along until, of course, I got to the point where, hey, let me try this for my insulin resistance. Let me keep pushing. Let me keep advocating. Like I said, I feel like I was done a disservice, you know, from the health care system because I had a problem with insulin resistance. And instead of the doctor saying, hey, there's something that we could try, you know, they said, no, these still fit over here in that box, and I'll always go back to that the healthcare meeting to be personalized and for people to advocate for what they need, because the time is lost and I can't get it back, but I am trying to, like I said, pay it forward. How can I take what I've been through to help somebody else that maybe gets diagnosed? I'm glad that 13, you
Scott Benner 43:00
know, you know, I'm so I'm so happy for you, you know, I'm just thrilled that you found this place. And I hope that you can, you know, hope that in some time, you can, you know, do what I said and to that other person, which is just, you know, kind of draw a line and start over again. Yep, don't think about what was lost, you know. Think about what you've got left and and how much better. Yeah, I really do. I hope that for you. Yeah, and I agree with you about the personalization of healthcare. I also think that, as you were explaining that it made me think of my stupid analogy about the electrical cords and maybe the podcast is just the outlet extender at the end of that whole thing. Like, you know what I mean, like, maybe it's just, it's it fits in that, in that whole mess, because that's what the mess is, and this is what it needs. Like, like, I've said this on the podcast a number of times, and I genuinely, at this moment, believe this, and I don't know where I'll be five years from now on, okay, or what the implications are that I don't understand, but I think someone should develop an app that you just tell your medical problems to and I think it should be run by an AI that can collate everything you've said and give you back suggestions about what you should look into, because I can't figure out, as we're talking, exactly what it is about you, like, what is the stew of you that allows you To make your way through this. And what do other people not have in their stew that won't let them get through your same prompt? Because there are plenty of people we could have dropped in your same situation that
Autumn 44:30
would not have come out the other side of this. Oh, for sure, right? I could not agree more with that. Yep. And that's
Scott Benner 44:34
random, and lucky for you. Yeah, right. And so we can't go finding other people and telling them, like, go do the right thing. You'll get an answer. Like, they might not have that ability or time or research or whatever, like, they just might not be able to get to it. But wouldn't it be awesome? Everyone's got a phone at this point. Like, wouldn't it be awesome if you just sat down with your phone and told it all of your little problems and then at the end, had its. Say to you, like, you know, this is crazy, but sound like you're Modi four, right? Yeah, and that's a real like, unicorn thing, but like, I'd go say this. Go show this to like, let's print out a one page here. Take that to the doctor, see if they maybe wouldn't see our sense on this, and look into it for you, right? I don't think that's crazy at all, by the way, and I and in my mind, it's the only way you're going to accomplish it for the largest group of people, because otherwise you're counting on the doctor knowing you, seeing you, being able to communicate it correctly, them being able to hear it correctly, them having the knowledge and the perspective and having heard enough stories where they'll be able to like, you know, two plus two is four at the whole thing, and I just think that's not gonna work. It hasn't worked so far. You know what I mean, like, so anyway, that's my hope. My hope is that because I've done it here. Have you ever heard me do it on the podcast with somebody?
Autumn 45:52
Yeah, I actually have where they've explained to you what they're thinking and you say, Oh, I think it could be this, yeah, but, or have you checked into
Scott Benner 45:59
that? Well, there's also, well, yeah, you've heard me do it, but that's just me working off my database of what I've heard. Not, you know, I didn't go to college and listen, or anything like that. I'm talking about. There's a couple of episodes where somebody had like, all these things wrong, and we just sat together and put it into, like, chat, G, P, T, and at the end, it was like, I think this. And I'm like, huh, that sounds right. And then they took it to a doctor, and they're doing better now. Like, that's amazing. Yeah, actually did that with somebody very recently. So anyway, but then, yeah, again, you'll say that, and then everybody's gonna be like, it's using a lot of
Autumn 46:33
electricity. You're killing everybody, and we let the AI go. We got to get back into reality over here,
Scott Benner 46:38
ruining the world. And like, I'm okay, all right. Anyway, you're awesome.
Autumn 46:44
Autumn. Thank you. I appreciate that. And like I said, I am a special unicorn. I just didn't really realize that I was the 1% of the 1% out here. And I will say, I feel like my doctors at the University of Michigan and the geneticists and everybody, I feel like they're always really happy when they see me, because I get to just add more to their case studies.
Scott Benner 47:06
I did hear you a number of times say things that made me think, Oh, she did eventually run into some really good doctors. I
Autumn 47:12
did. I am so blessed to have found them. There's no doubt about that. And you know, the genetic specialist, when we were going through the Modi testing, they actually thought I was going to be Modi three, because I do have some renal cysts on my kidneys. And they're like, oh, yeah, this is you. And they told me it would take probably four or six weeks for those results to come back, and it was within maybe five days. And I'm like, Why are they calling me? They were so excited. They were like, you, you're really special. Like, you have Modi four. And I'm like, what does that mean? Like, like, this is just really rare, and you're the 21st case that we have in our registry. And I'm like, holy, 21st Yeah,
Scott Benner 47:48
all right. How does this work for me? Can I get this fixed? Like, I see you're excited, and that's awesome. But like, yeah, yeah. All that means an answer, yeah.
Autumn 47:56
And when do I start taking this all for Uranus? Because
Scott Benner 48:00
I have to tell you, just so you all know how my mind really works. I'm down to wanting to call the episode unicorns anus, but it's probably going to be autumn needs an answer. That is true, yeah, I mean, but if I had my druthers, just no unicorn anus would definitely be the episode title,
Autumn 48:20
you know, Autumn needs an answer. Unicorn, anus, that's it right there.
Scott Benner 48:25
Put a colon in it. No pun intended on the colon thing I meant, I meant, I meant semicolon. Did I mean semicond? I meant colon. Autumn needs colon. Autumn needs an answer. Colon. Yeah. Anyway, sorry, I don't know my punctuation.
Autumn 48:44
That's okay. You'll figure it out. And if not, you have AI, they'll help you, not in this
Scott Benner 48:49
lifetime, not if you not. If you saw my English scores when I was in school, you wouldn't say, go figure it out. You'd say, How come that guy doesn't know where a comma goes?
Autumn 48:57
Well, you know you are from New Jersey, so we have to forgive you. Look at you
Scott Benner 49:01
coming around on me making fun of Michigan an hour and a half ago. Very nice. Oh, you're awesome. All right, autumn, hold on one second for me. Okay.
US, med sponsored this episode of The Juicebox podcast. Check them out at us. Med.com/juicebox, or by calling 888-721-1514, get your free benefits. Check and get started today with us. Med, the podcast you just enjoyed was sponsored by tandem diabetes care. Learn more about tandems, newest automated insulin delivery system, tandem Moby with control iq plus technology at tandem diabetes.com/juicebox there are links in the show notes and links at Juicebox podcast.com a huge thanks to cozy Earth for sponsoring this episode. Don't forget, Black Friday has come early at cozy earth.com right now. You can stack my code Juicebox on top of their site wide sale. This is going to give you up to 40% off in savings. And these deals are definitely not going to last. I'm talking about sheets, towels, clothing, everything they have. Get that holiday shopping going right now today. Do it? Do it. Do it. Cozy earth.com. Use the off code Juicebox. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcasts and set it up so that it downloads all new episodes. I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card?
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