#395 Conversation with Cameron J. H.

Cameron has type 1 diabetes and a terrific perspective. Find him on IG with this link. He's @young_giftedandblack

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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 0:09
Hello, everybody, and welcome to Episode 395 of the Juicebox Podcast. I met Cameron on Instagram, and by met him I mean, I watched him interact with a number of different topics for a while. And I kept having this same thought every time I saw him. This person is clear headed, thoughtful, I can see kind of all sides of issues. And I liked the way he thought. Eventually I saw Cameron interacting with a topic and I felt like he and I agreed about it. It was how he saw some people using their power, their advocacy. And how maybe, I don't know, it could have been better focused. I felt like it missed the mark just a little bit. You know, it's something I saw online, I didn't really think twice about just noted it and moved on. But then when I saw Cameron discussing it, I thought this would be an interesting conversation we got together and chatted about this. I think I was right. So this goes in a number of different directions. We talk about insulin pricing and how to advocate better for it. We talked about the impact of social media, how some people sometimes seem to misuse it. Really, I just find this to be a very interesting conversation. I hope you do as well. For those of you who enjoy when I get very passionate, you're going to love this episode. If you'd like to find Cameron on Instagram, he is young, underscore gifted and black, young, underscore gifted and black on Instagram. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan. or becoming bold with insulin. Alright, oh, a first couple minutes of the show are a little crackly but we fix it. So get through like the first four minutes you'll be okay. I'm Cameron, known as young underscore gifted and black on Instagram. That's primarily where I spend most of my time in the diabetes online community. I have lived with Type One Diabetes for 21 years, quickly approaching 22 years now and you're 30 years old. So you've been at it since you're a little kid. And we had a little technical problem and I asked you once but I'll ask you again, any type one or other endocrine issues in your immediate family or slightly extended family?

Unknown Speaker 2:40
I'm not talking one we do have a few pre diabetics and type two diabetics in my family and and also some hyperthyroidism that runs in my family. But I was the first one to be diagnosed with Type One Diabetes. First one to get the type one well,

Scott Benner 2:57
the the thyroids, a, obviously another endocrine issue. So let's see. 21 years ago, what are we talking right around the turn of the right around? 2000? Right.

Unknown Speaker 3:09
Exactly.

Scott Benner 3:10
Yeah, no kidding. What was it like growing up with type one.

Unknown Speaker 3:15
It was all over the place. To be honest, I think I

Unknown Speaker 3:21
was diagnosed about a week prior to my sister's birthday. Um, so she got bummed out and had to miss her her birthday that year, unfortunately. But when I was diagnosed, I don't remember much other than the last meal that I ate prior to being diagnosed is this fat fast food restaurant called Captain D's. And so we had had Captain D's in the south and, and the next thing I remember is being rushed to the doctor's office being told back in half candy. And my parents telling me that I playfully passed out probably from being told I couldn't eat candy anymore. And

Unknown Speaker 4:07
and so that sort of

Unknown Speaker 4:09
started at all. And so we learned as much as we could in the hospital as they tried to teach you sort of the ins and outs and don't send you home until you can give yourself a shot and I was someone at the time who was very much in needle folk had an phobia of needles and so I struggled with giving myself shots for the longest time. And even when I got on an insulin pump, a couple of years later that that was a struggle for me just because I was not a big needle person. But for most of my childhood, I pretty much had my diabetes or not necessarily hit it but so much as ignored it as though it weren't a thing because I really wanted to fit in with all the other kids. Although every time someone fell and scraped a knee or something they would rent the camera to say can we check their blood on your on your meter sensor uses blood. Of course, the answer was always No. But that was that was pretty much the youth. I think. For me, pump management became really what helped me a lot through through childhood, when I was first diagnosed my first pediatrician, actually, we found out later she she would not give me access to things like an insulin pump or and insulin pins even. So we were using manual injections, even when it's when things were just coming to the market and starting to be more popular. But we later found out that it was only for her patients of color that she wasn't giving that access to. And so we switch quickly switched into chronologist, and one of the best from Children's Hospital. And he quickly got me on to insulin pump therapy, and it helped my management so much, and so so much more and being able to do that. And he also put me in contact with this diabetes camp in Alabama called Camp seal Harris. And so we went there a couple times as a family where I was able to meet other kids with T one D and sort of reshaped my script my the way I live with diabetes for a little while. And it was also the first time I met a juvenile type two diabetic. I was at that camp to okay.

Scott Benner 6:27
Cameron, I want to stop you for a second for two reasons. One, I want to dig into what you said more. But the other is that I still am getting like an electrical sound from me. And I was wondering if we could disconnect for a second and just reconnect and see if that helps. Okay, can I connect on my phone and see if that works? And that was gonna be my my, my next suggestion. Oh, that's so much better. I'm so happy. Perfect, perfect. Perfect. All right. So if you're settled, camera, my question was gonna be I feel like so Cameron, listen to you, I asked you about you. And I told you who I am. And you may not know me, because most people who come on the show, have heard about it, listen to it, or help by it and they reach out or even when I'm looking for people to be on I'll put the word out. But you I went and found you. You're an uncommon guest on the show. Because Let me see if I can make sense of this for you. I'm almost 50 years old. I'm old. Okay. I'm only aware of social media. Because I have a popular podcast. And this is one of the things you do when you have a podcast. I had a blog before that and still do for over a decade. It was popular. And so I was on you know, Facebook and Twitter, we had Twitter used to be huge for diabetes, it isn't really anymore. It seems like that's kind of been taken over by Instagram. So I'm on the cusp of understanding but you still understand that I'm an old man, when I'm talking. Always keep that in the back of your head while we're speaking. Okay. But I saw you on Instagram, and I thought this kid has about three people's worth of common sense. You just really seemed like a level headed thoughtful person to me. And and it's why I reached out to you. So I think you're talking about in the health care of black and brown people. Implicit bias, right? Like, there are some physicians that just look at you see your skin and say, oh, that person won't be able to figure this out, or they won't try hard enough. So it's not worth giving it to them, or they have some sort of a preconceived notion that would stop them from giving you better care. Is that was that what you were getting out when you said you couldn't get like pens or, or a pump?

Unknown Speaker 8:48
I definitely believe that's a part of it. We, we just noticed that that. For some reason, most of the you know, when you are diagnosed with diabetes, as a diabetic, you spend a lot of time in waiting rooms with other patients and you as a kid, and as back then social media wasn't as prevalent, and so parents were speaking with each other and talking to each other. And it just it quickly became apparent to us that all of the patients that were seeing that particular endocrinologist, or that were of color, were still using manual injections. Even though we had all basically asked for insulin pumps that we could discuss what an insulin pump therapy is. Or even if we could use Batman pins were not a huge technology. But it wasn't it was just it was an improvement to using regular injections. And so even when asking those type of things, we noticed that that particular endocrinologist was almost systematically denying her patients of color access to what are now viewed as basic diabetes tech. Everyone we know now has a pump or an insulin or an insulin pen and for some reason that that particular person. And keep in mind this was in the south in an Alabama but overall there's a there are health disparities among the people of color in the system for certain. No, I mean, it's I, it's obvious I have to again, I only can have on who I can have on. But I've spoken to enough enough people now who, you know,

Scott Benner 10:22
who have said the same thing, enough to make it feel like it's, you know what I mean? Like one person says something you go really, maybe, maybe you saw it differently. But then, you know, I don't know how many times you have to hear something before you think yeah, that's, that's what's going on there. It's obvious, and you saw it, and your parents saw it, obviously sit in that doctor's office. And so it just it's, it's unacceptable. Now, in that scenario, you move on, you go to somewhere else, you do better, you're not staying behind the fight. But you do, you are taking your ability to use social media now and, and making, I wouldn't call you a combative person, you're just again, like just a very common sense person. How much of what you're doing online, do you think's informed by that experience that you had when you were a little?

Unknown Speaker 11:12
I think quite a lot of it is informed by that experience. I'm someone who, and I know several people who have had to use access to insulin programs who have had to petition an advocate on behalf of their themselves to their, their doctors. And so a lot of that is really informed by my experience in navigating the healthcare system as a patient of 21 years who just happens to be a person of color, right? And so it's in my advocacy, my online advocacy, because I do partner with a few other nonprofits on the side. But my online advocacy is really drawing attention to some of that. I think, a lot of times we in the online community forget that there's a whole community of diabetics that aren't in that online space that don't meet the same criteria that we meet. While we're busy playing games and for giveaways on social media. There's a person who doesn't even have access to basic things like test strips, and insulin who has no idea that we're on here playing for whatever the new cool sticker to go over your CGM is, you know, yeah,

Scott Benner 12:26
well, I so Cameron, I have, um, the first time I ever spoke in public, I was approached by an organization in the Dominican Republic. And they asked me to come down and give this talk about, you know, how to manage better when you didn't have as much technology, right? Like how to take good care of yourself when you didn't have technology. And I thought, Oh, sure. So I prepared myself and you can imagine was the first time I ever spoke in public, I was over prepared, I'd written things out and I don't read when I'm speaking, I just written things out so that I could read it over and over again, so I could feel comfortable saying it when I got there. And I don't think I was in the Dominican Republic for an hour and a half before, I recognize that my understanding of not having money didn't include their understanding of not having money. I like if there was a scale that went from, in my mind that went from flat broke, to wealthy. They were somewhere so far below my idea of flat broke, I didn't even know to consider. And they and when I got there, I said them, I need to go back to my room. And I have to revamp everything I was going to say because your situation is more dire than I could have possibly imagined. And that was the first time it became really clear to me around diabetes, specifically, that I live in a bubble and I don't even mean that in a bad way. I don't mean like I'm walled off from the rest of the world, I just mean that I only have a certain number of experiences and they inform my reality. And, and I mean, in in full, you know, clarity. The reason I found you is because while i don't know i Cameron, I know that some people worry about being very politically incorrect and, and I don't know if I have it in me to speak clearly and worry about it at the same time. But what I felt like I was seeing was a small band of what I'll call social justice warriors, but in the bad connotation. It's interesting, isn't it? how all these sayings have now a good and bad, like you could be woke in a good way or woken up? ironic way or, but you know, so. So people are out there and they're they're railing against the system. And they and as I see them doing it, I think, you know, some well meaning kids like how it feels to me, you know, they mean like trying to yell at the man a little bit and this isn't fair. And this isn't right. But in my heart, I thought these programs that they're denigrating are helping way more people than they May No. And those people don't have the luxury of sitting around waiting for a perfect handout to come to them. Right. And I felt like you really had a firm grasp of that. I was wondering if you couldn't tell me more about it.

Unknown Speaker 15:17
Exactly. And so I think the program that you are referring to, that I made comment to was the new program that that's been introduced in as a collaboration between several nonprofits and sponsored by some of the big insulin manufacturers that get insulin.org program, that's the one. And what me and several other diabetics of color in lots of color all notices, there was a an outward wave of people putting down this program before even really understanding what it was. And it became almost a bashing of the organizations that put it together. But even more so attacking one individual in particular, who, um, I don't even know how he got pulled into the fight of a celebrity who has type one diabetes, and what his stance is there, but to me, it just seemed as though we weren't focusing on the right thing. And I don't know that that's the right form of advocacy, always, I and the case was pointed out to me that, yes, we as diabetics should hold organizations like jdrf, the American Diabetes Association, beyond type one T one International, we should hold them all accountable for the programs that they do since they're representing us. But the other part of this is yes, but there are people who actually could benefit from the services that are being provided right now. Right. Um, I can speak to my own experience when I was transitioning from my job in Illinois and Iowa to come move to Texas last year, I switched to Cobra for my health insurance, Cobra playing for my health insurance. Well, we know Cobra is expensive insurance in and of itself. And so on top of having to pay for your health insurance, then you're also responsible for paying, if you haven't met your deductible, you're the bulk of your costs for your insulin and for your trips. Well, so I had to locate one of those planes through I think it was Eli Lilly at the time that I was using, just to be able to get a discount on insulin that I was. So I can still maintain my health insurance, for my doctor's office visits and things like that while also maintaining prescriptions. And that's me, someone who has a full time job working 40 plus hours a week, and doing fairly well for myself, as a young man. Yeah. But imagine someone who is working two or three jobs to sustain their family, who does not have the time to Google all sorts of resources, let alone having to parse through Google, what is real information versus what is a scam. And what that means they have everything located in one place for them. So that they can go in and determine for themselves really quickly. If this even applies to me if I can use any of it and then move on without having to spend hours that they don't have searching Google. Or even if we take it to the next step, right? If we thought about someone who is a caregiver, to to a diabetic, say, you have a parent who has just been diagnosed with with Lada and you are all of a sudden the caregiver you have an older child who may be less less capable than someone else who's just been diagnosed with with diabetes. Imagine what it means to have one place where you can go and gain all of this information in one fell swoop, instead of having to spend hours on hours of research trying to figure out how you're going to make ends meet for a disease that, quite frankly, is really expensive to manage, right. And I think that that's what we that's what got missed in the midst of that problem that there are people who there are diabetics who have other disabilities and diabetics with ADHD, diabetics who, with things like multiple sclerosis who can't sit up for a long period of time to function or concentrate for a long period of time to navigate all of these resources and look through all of the things that you can find on Google Where's for this particular program that came out. It's all in one source. And so when I saw that people were attacking organizations and attacking the celebrity diabetic, it sort of rubbed me the wrong way. And it was almost as if this is not the type of advocacy that we need. And it actually reminded me of to draw a parallel It reminded me of what's known as convergence theory, which was popularized, and and that was the other post that I put out on this topic. It was it was this theory that was put out, if I remember correctly back in the 80s. But it's been tied to

Unknown Speaker 20:18
race theory has been tied to a number of other

Unknown Speaker 20:22
theories. But basically, it says that, at its core, it says that the, the white people won't necessarily join in the fight for the needs of black people until they are affected by the same things, right. And so if we both are experiencing a loss of cash flow, then we are more likely to rally together, right. And so when we, when I was thinking about this, it was basically the same thing they were arguing at the celebrity, but this celebrity is not navigating the needs of having to find diabetes supplies, not navigating the needs of trying to afford insulin neither or the big companies that they were arguing with. And so they're looking for our interests to converge when quite frankly, they aren't, yeah, they're not going to converge, at least not right now. And so, that was the other thing that came to mind that you're arguing that at a group of people who have no reason to join your fight. And we can be doing something to actually help those people who need access to insulin, get informed.

Scott Benner 21:31
And Cameron, what it made me and listen, not just in this scenario, to be clear, but in general, when this happens, and the reason you don't hear this spoken about more, is because if someone brings it up and wants to talk about it in what I think is a fairly centrist way with what we're doing right now is we don't really have a dog in this fight. We're just sort of talking about the topic. When you talk about it like that, if you miss speak, speak a word or even if you don't, someone will take a couple of words that you say, make it seem like you're horrible. And then we we fall down the rabbit hole of canceled culture, you know, I mean, this, which I think they used to call cyber bullying until you decided you were doing it for a good reason. And now all of a sudden, it's okay. But, but what but I think about when I see this camera, you're gonna get me all lit up. When I think about what I see this is I think about what Barack Obama said recently about woke culture. And I actually pulled out the the quote here,

Unknown Speaker 22:27
you know, this, this idea of purity, and you're never compromised, and you're always politically broke and all that stuff, you should get over that quickly. The world, the world is messy. There are ambiguities.

Unknown Speaker 22:43
People who do really good stuff,

Unknown Speaker 22:48
have flaws.

Unknown Speaker 22:51
People who you are fighting,

Unknown Speaker 22:55
may love their kids.

Unknown Speaker 22:59
And, you know, share certain things with you. And I think that one danger I see among young people, particularly on college campuses, Molly and I talk about this. Yeah, it goes to school with my daughter. But I do get a sense sometimes now, among certain young people, and this is accelerated by social media. There is this sense sometimes of the way of me making change is to be as judgmental as possible about other people. And that's enough, like if I tweet or hashtag about how you didn't do something, right, or use the word wrong verb, or then I can sit back and feel pretty good about myself because man, you see how woke I was, I called you out.

Unknown Speaker 23:50
I get on TV.

Unknown Speaker 23:52
watch my show, watch grown ish.

Unknown Speaker 23:58
You know, that's not that's not activism. That's not bringing about change. You know?

Unknown Speaker 24:07
if all you're doing is casting stones,

Unknown Speaker 24:12
you know, you're probably not gonna get that far. That's easy to do.

Scott Benner 24:19
I can't agree with that enough. And, you know, I see. Like, like, think about it. You're a person who has the time you have the energy, you have the desire for something good to come from your effort. And you don't recognize that you're trying hard like I get with those people are yelling about right. On one level. They're upset that organizations take money from companies that make insulin. They're upset about that because they believe that insulin is overpriced. I get that I see the through line there. That all makes sense to me. Easily in a real conversation I could say to you if my organization is helping people with Type One Diabetes. Does it matter where the money is coming from 100%. Because if the money doesn't come from the insulin manufacturers, you know, it's not coming from somewhere else right? Now, there's problems with that, obviously, and the world's not perfect. But what you forget while you're trying to make the world a perfect place, is that there are still people who can't get insulin. And that's a big problem. So is fixing one problem at the cost of another problem? How is that the right answer? And I think the problem that we run into here is that there are no finite definite answers to big issues. There's nuance, and social media does not allow for nuance. It allows for short declarative statements and and get people riled up. So they like your stuff. And I don't even want to talk about what that probably does to the person's psyche, they're probably cool. I'm doing a good thing. I'm doing a good thing. Someone else like this, someone else agreed with Meanwhile, you're like a terrorist, nobody could disagree with you if they wanted to, you know, so big, because, again, social media, what are we going to get into a deep conversation in a Facebook post, that's not gonna work, you know. But again, what gets lost, people who literally need the services, who don't have access to them who by the way, might not have a phone or a laptop like you do, who might not have the luxury of time in the middle of the day to look through things, you have any idea how many people no camera, you probably don't listen to the show, but but this show helps people in a massive way, learn how to use their insulin in ways that decrease their variability. And their a one c improves their time and range, it makes their life better, it gives them more sleep, it gives you all the things that come with really understanding how to use insulin, right? And, and that's, to me a big deal. Now, I can't do that if I don't take ads, right, because I'm a person and I have bills, and I have responsibilities. And if you want me to put this much effort into this podcast, well, then I have to be able to pay my bills. Still, I can't, I would be nice. I'd love to live in a society where I could just do a nice thing for people. And food would fall on my table and my house would stay warm. But that's not how that works. So I built up a, I built up a listenership, I put some of my own free time into it in the beginning, right? Like I had to build something up. And then I had to have something valuable enough to go out to an advertiser and say, hey, these are how many people I can reach. If you'd like to give me some money to reach them with your message, I can do that for you. That lets me make the podcast bigger, lets me find you and have this conversation, lets me have the conversation yesterday, with a mother whose child has type one diabetes, and Down syndrome, you get in a lot of that conversation, the diabetes community, you're not you get it from me, because I have the time to treat this podcast, like a business. And if you want a place like I don't know, it doesn't matter, any one of those organizations to exist to help people with diabetes, they need funding. And they need bright, smart, motivated people to work there. And those people need insurance. And those people need to get paid. And they have heating bills. And this is how things work. That's all it's not. So it's not so difficult to understand. And and I don't have a lot of time for people who run around and want everything to be perfect, and are willing for nothing to be good until everything is perfect. That doesn't make any sense thing.

Unknown Speaker 28:31
Exactly. And that's a really good point too, because it they really only two business models for a nonprofit, they can either be supported by these, these larger organizations who can who actually want to support them, or they can be funded by the donation of private support, right. And surely, we're not coming down in waves, to be able to find the whole organization that is beyond type one beyond type two and all of their other subsidiaries across the sea, in order to do that, and so that there is that that there's also this bottom line that they have to need to even be able to keep their own doors open to support the mission that they need that they need to do. And that means that they had to take a pivot and step back and their board had to say, you know what, this was our original founding decision, but we're realizing that we need to make a change to our own practice into our own code, then fine, that's what they had to do to do that. And there's just like you said, they're still providing those resources to diabetics who, who often get lost in the background because we don't even think about them who needed these resources. And I think the other piece of this that rubbed me a little bit the wrong way as well as where the missile pandemic. Tons of people have lost jobs throughout this pandemic and loved ones and so that's a whole heck of a Another cost to, or barrier to the excess of insulin for a lot of people. And, again, those diabetics were lost because they're not in the diabetes online community, they don't really have time or the knowledge that it even exists. I mean, even those of us who are there already, we will tell you how many of us who are in the diabetes online community right now will tell you, we didn't even know this was a thing until just about six or 12 months ago, right? So imagine someone who doesn't have access,

Unknown Speaker 30:31
trying to figure these things out.

Scott Benner 30:33
It's been a private thing. I'm sorry, it's been a problem forever. I met a woman named Sheree Shockley 15 years ago, I don't know if you know her, but she has diabetes. And she's been in this space for a ton of time. And she would beat into my head and anybody that would listen, there are so many more people offline than online, that we're not reaching them. You have to reach them. It's why I go out and speak at jdrf events. Because I reach people who wouldn't find this podcast, it is not Cameron, because I enjoy flying to Oklahoma in an airplane from New Jersey. That is not why it's because I get there. And there are four or 500 people who would never hear this podcast before I can tell them what I think about using insulin, they could take that or leave it. But if they take it, they might end up being better off. Those are people who were never going to get reached otherwise. And I really, I really again, I'd have to thank sharees because she was from the middle of the country, she was from a part of the country I'm not from when I again, my bubble. I'm from the east coast, where I live, everyone has a computer, everyone has the internet camera, and I could probably pump up I could probably get a an HD movie, do you with my internet connection in about three minutes, right? I am using lightning fast internet speed, I have a computer that I'm recording on and a television I'm looking at my notes on that's not everyone's life. And and bless her for saying that to me, because I never would have thought that before. And I'm doing my best to reach them this new technology is a little more accessible for people you know, being able to, to to podcast to somebody is, is definitely different. But then you have to have you have to have stability over time. And and and what am I and why? And what do I mean by that? And why what I mean by that is, and Cameron you're young man, okay, but they're there. It's too easy to be famous now. And and I mean that because there's no vetting process. So anybody who can put an account together, or buy a microphone can suddenly broadcast their voice out into the world, right. And I think that's amazing. And I think it's it's wonderful. But what you lose is the vetting process, you lose. Young Cameron, 17 years old in high school says, I think I want to be on the radio one day, then young Cameron has to get into a college to go to broadcasting school to learn about communications. And then he's got to see if he's got a vibe for it. If he's good at it. Does he speak and people listen, can you put a coherent sentence together, see, I'm I'm in all the time that he's got to get out of college, he's got to get a job, it's going to be in a little market where nobody's listening. He's gonna have to do a good job, people are gonna have to vibe with him, he'll move up, he'll move up, he gets vetted every step of the way until he can broadcast his voice out to the whole state, or the whole region, or the whole country of the whole world. takes you 20 years to do that. Right. But now I can just go huh? Instagram. Cool. And now I'm talking to people. All right. And and so you're not vetted in any way not to say that you need to be to speak your mind. I think that's fine. But from the other person's perspective, the person on looking everything looks legitimate. Now, you know what I mean? You get a nice logo, he some good graphics, you're good at picking out fonts, you take some well lit photographs, and you could be Kim Kardashian as easily as Kim Kardashian could be Kim Kardashian, or my podcast looks just as legitimate as another podcast that no one listens to. And you can't tell it's a it's a storefront. It got a nice sign good lighting and there's a nice mannequin in the window with a good handbag on it. This must be a ladies clothing store. That's that. And and but you don't know what's inside. You don't know what it took to get there. You don't know the intention of the people inside. And nobody gets weeded out anymore. And so everybody's voice is bouncing around. And, and and here's the thing about people, and everyone believes in themselves. They believe in their thoughts. And that's good. I talked about this on the podcast a lot. If everybody was always second guessing each other, we'd all just be a neurotic bundle of like goo on the floor, right? Like you have to believe in yourself. But think about that away from this idea.

When we see people in the streets fighting over race, there isn't one side of the street who thinks I'm doing the wrong thing and one side of this things I'm doing the right thing, everyone thinks they're doing the right thing. Now, obviously, reasonable people can step back and see the difference. Right. But the people who are being unreasonable, they don't know they're being unreasonable. they genuinely believe they're fighting for something very important. And that in such big ideas as race, or you know, or, you know, what, why would anyone stand up and say, after George Floyd is, is, is dead? Why would anybody stand up? Like, oh, I don't know, I think it's reasonable, you put his knee on his neck like that. But who would do that? It's a person who has a stake in some other thing. Doesn't matter what that steak is, but they start defending it. And you don't realize until you really step back, that everybody wants to be on the team. It just, it's we're just wired that way. He can't be an Eagles fan of the Giants fan, that's unreasonable. Why not? I don't know. You just can't be Well, sure. You could be, you know, like, why can't I see something horrible happened in the world? And see the nuance in it, instead of just picking some headline side? You know, what I mean? Like, why can't we all just think a little bit and be clear. And and notice that our words, and and, and this fight that we're putting up, it's probably hurting more people than it's helping? I don't know, man. It's just the world can't be what everyone wants it to be. There's how many there's 8 billion people on the planet, almost we all can't make it the way we want it to be. But now suddenly, we can all tell everybody it's not right. And it's never gonna very quick, Scott. Yeah, I'm sorry, can you get to me? I'm sorry.

Unknown Speaker 36:40
No problem. I was gonna say really quickly. And that's the whole point of it, I think. We tend to treat everything as though it's so black and white. But my significant other is, um, is a psychologist at a federal prison. And one of the things that she constantly reminds me of is, there's no you did this crime where you didn't do this crime. And so you get here, there's a whole slew of gray that leads to whether a person gets convicted and, and what that means for for their sentencing and their mental health and everything else down the line. And that's that that is the same case here. Like there's no black or white. Right or wrong answer. There's a whole slew of gray in the middle of this and that gray is unfortunately, the people who get passed over a lot of the time. Yeah. And it's unfortunate,

Scott Benner 37:28
we're not actually fixing anything. We're just picking a side that people can agree with. That's all or that you can't you know, that somebody on my side can argue with, right? Like, you know, listen, I go back to the insulin thing again, you don't think I couldn't sit here for an hour and make an impassionate speech about why insulin is overpriced? Of course I could. I could 100%. And I and I may even feel that way. But it doesn't matter how I feel. Because there are companies on the other side that need to employ people and keep lights on and keep making insulin. And I could easily argue the other side, like what do you what do you think's gonna happen? Cameron, listen, let's pick a place you love to eat. Okay, not that place that gave you diabetes, but the other place. And so you're so you go in there and you buy a nice sandwich and a drink and they give you some chips with it. They went $23. Will you sit down? And you go, Oh, no, there's $4 worth of meat here and 50 cents worth of bread and 20 this is only worth six bucks. What's your play here? You're gonna go explain to them how they should only charge you $6 for it. And you think they're going to go? Oh, okay. Yeah, sure. Yeah, no problem. I don't need money. I'm fine. That's great. Or you're making too much profit? Well, who's to say? And then I could, then you can make the argument. Well, what's insulin, right? That's different. It keeps people alive. And then when people tell you shouldn't be able to make a profit off of insulin, then there are other people who might say to you, well, then how do you expect the company to stay open to continue making your insulin for you? Or what other things shouldn't cost any money? Like if insulin shouldn't cost any money, Cameron should heart medication costs money. Right? Where do we draw the line on that list? And then you could say, well, none of it should. And again, maybe i'd agree with you. But that's not how the country works. So go fix that. Don't, you can't yell at the guy making the sandwiches for charging 22 bucks for a sandwich in a hipster neighborhood because people are dumb enough to pay for it. Do you know what I mean? Like he's just playing the handi was dealt and, and he's gonna keep raising those prices on that sandwich until you stop paying for them. And then you go, Oh, well, I can't stop using my insulin. Again. hundred percent right. But you got to go at government about that. And industry at the same time. You can't just yell at the industry because because why not because it's right or wrong, because they're not going to stop. Did you see them saying like, like, no one's just gonna give money back. That's not how money works. It just it doesn't work that way. And so you're getting these companies to pour some money back into help People, that's the thing you want to yell about. Like that none of that makes any sense to me. And, and, and again, let me be clear for everyone listening, I think insulin costs way too much money. And I'm certain that it could be cheaper. I am also certain if you said that to a pharmaceutical company, what they would tell you is they'd spout a number off that they have, it's in the mid 80. Somewhere, Cameron, I don't know exactly the number, this amount of people get insulin through their insurance and have no financial burden getting to their insulin, it's cost them $20, every time they ordered or something like that, that's what they'll tell you. And they'll say, and we have programs to get insulin cheaper or free to those people who fall through those cracks who don't have private health care aren't covered by the government, somehow those people in there, and I believe that number of people is mathematically a smaller, a pretty small number. Of course, again, I could stand here and say if one person dies because of not having insulin, then the numbers too big. And I mean that I genuinely mean that. But but the company, from a company perspective is doing all it can. So you're coming from a social perspective, they're coming from, you know, a profit and loss perspective, you're not having the same argument. And and to act like you are is silly. I just think that I think that change happens from within. And I don't understand thinking that standing outside yelling is going to do much more than raise awareness, and it will. But even at that, what kind of awareness is that? If you have 1000 followers on Instagram, how many people do you think actually see your picture?

Unknown Speaker 41:41
Definitely not all 1000? No, hundred percent not.

Scott Benner 41:44
So. And even if you have a little echo chamber of people who agree with you, and this one's got 600, and this one's got 1000. And this one's got a podcast at five people it's doing this one's got a podcast of 50 people listen to you're not reaching enough people to impact anything. And the thing you're not recognizing that the rest of the world thinks, is there's still only a small percentage of people paying attention. Do you have any idea how many people who are going to listen to this episode don't know what the hell we're talking about? Most of them, and,

Unknown Speaker 42:15
and I mean, to even go off of that I what what also made me think about was we weren't advocating in the right way. What made the civil rights movement of the 60s, so successful. And if you really study Dr. King, you'll realize that he was a master strategist of realizing that you have to really hype up the media in order to draw attention. And so there were plenty of cities that called him in to do a march. And if there was no press there, he would turn right back around and leave that city. And go to a place where they could get the news and have one of the biggest showcases of this is actually my hometown, Birmingham, Alabama. A lot of people don't know this about Birmingham. But Birmingham was supposed to be the Atlanta of the South, the original Atlanta airport, airports, they're always at the heart, Jackson field, airport. Airport was supposed to be built in Birmingham, the investors who were going to build it in Birmingham, pulled out of Birmingham because of what they saw in the media about the Birmingham bus boycotts in the Birmingham riots. And so what made that successful was a number of things. They brought in the media, he utilized the media. And he also realized that he needed to advocate to the government. And I don't think that we've made that connection yet, we need to get a better showcase of what insulin means out there in the media. I mean, we've had a few documentaries here, like diabetes rising and things like that. But that was on public broadcasting station. Not many people watch that if their daily television in the era of Netflix and Hulu, and everything else, right. Yeah. And then the other part of this is our government officials. I've been working with a nonprofit here in in Texas to really plan out what our game plan will be to advocate to our legislators here in Texas in Texas, our legislators meet for five months, every two years. So for only five months, every two years, we have a really short window to get in front of them and say this is what we need. This is what we need you all to pass. This is what we this is our game plan. This is why insulin is important for every diabetic, and why you all need to allow others to be able to get into this space to actually make insulin to diversify the field because right now they're their insulin is basically a monopoly. Yeah, we talked about you're hearing the news, the conversation about Facebook and Google and and some of the other Their digital companies, Amazon and how they are operating in a monopoly. Insulin is in the same category. I mean, it's operating at a monopoly, there are only 433 to four manufacturers who make all the different brands of insulin. While there's no diversity in the market, we'll Imagine if we petition all of our government officials to see this as an issue, if we got media behind us to show that people are actually dying from access to insulin, and that a lot people don't even know that they that there are different types of insulin. And I think that's what struck me. I'm a, I'm a part of a group on Instagram called the diet crew. And one of the things that we tried to do is provide information and advice as we can about our own personal diabetes, to people who may need it. And one of our members actually does a lot to know all of the resources in his region. And so he was contacted by someone who was still using the old our insulin that you know, back in the day, when you got insulin, you actually had to roll it up to mix it and get the right mix of insulin with cloudy insulin irregularities when she was still using that type of insulin, and did not know that there were other types like novolog, in human locked up 200 and all of these other things, and she could even get access, she was worried because she couldn't get access to her normal insulin anymore. And didn't even know that these other things, these new forms of insulin were were available to her. And so, like you said, there's so many nuances to this conversation, there is the white coat syndrome, where we know that people who are less educated are less likely to ask their doctors questions. And so if you're under educated or less educated, you're less likely to actually advocate for yourself to your doctor, or even a question with they're telling you so huge. So those things were

Scott Benner 46:56
I'm sorry, I'm sorry, it's a huge problem. And it's not easily fixable. And I didn't mean to cut you off. I just was trying to kind of chime in for a second. But since I cut you off, it's a big thing that we talked about on the podcast all the time. I'm always like, I'm always telling people like I know you were raised right to listen to cops, and teachers and doctors and just believe that they intrinsically know something that you don't know about the world. But you have to ask why when they say no. And that's almost impossible for a large segment of the population. And and whether they're well educated or not. Some people just can't brusque it authority at all. They have no ability to do it. And it's not a it's not an even a shortcoming. They're wired that way. You know, I'm sorry. Yeah.

Unknown Speaker 47:41
Well, and that becomes another barrier in and of itself to insulin. So many diabetics don't even see an endocrinologist. And so they struggle with getting the prescriptions filled.

Unknown Speaker 47:51
Yes.

Unknown Speaker 47:53
And so I think that we, we just what I saw on Instagram, and I looked on to I tried to stay away from the diabetes online community on Twitter, because sometimes it just becomes too much to me, but I looked on Twitter. And what I saw just, it did not rub me in the right way. When I think about all of these people who are affected in many different ways across the spectrum, that is diabetes,

Scott Benner 48:17
I don't understand. It's my way or the highway in any situation. So like, you know, I see people will advocate for specific ways of eating. And you're like, Okay, well, thanks for letting me know about the way you eat. And I appreciate you showing me how well it goes. And thanks. I know now, that's all you can do is educate a person, right? When they start badgering and yelling and making these like like, you know, scary statements that people like, you're gonna kill yourself. I'm like, all right, you said it already, man, like calm down. You know, like, like, freedom is important, by the way, and I don't know if everyone understands freedom. But once you make one, tiny, one tiny, slice off of freedom, it's not freedom anymore. It stops being freedom, the minute you limit one person, that's it, it stops being freedom that and so you have the freedom to stand up and say, Hey, I use this device and it works great for me and I want other people to know about it. That's lovely. I eat like this. And look how great my one C has been. And I feel terrific. That's a giving thing from one person to another. When you start badgering people, and when you start scaring them, and when you start making them feel like if they should deign to disagree with you out loud, you will gather up five or 10 of your friends to attack them back so hard that they that that you cancel them right that you you shut them down keep them from from speaking their words. You just did the same damn thing to them that you didn't want them to do to you. And I don't understand how we all don't see that. And and I don't understand how people want to even be involved in it. And it just, it fries my mind these people that you're talking about. And and by extension, you know the people that are they're nice people like I don't know everybody Dude, I got like 10,000 people follow me on Instagram, I don't know them. There are men, there are hundreds of thousands of people listen to this podcast. I don't know them. But but they keep coming back and they share the show with other people. And I appreciate that right. And I wish I could know them all. I wish I could. But I can tell. While I don't know them, I can tell that most of them are just good hearted inside, they want well for themselves. And they want well for other people. And it's just, it's a psychosis almost wanting someone wanting so badly for someone to understand what you understand that you're willing to strip away someone else's freedom, someone else's ability to speak, so that you can have yours be the only one left. I mean, it reminds me very much of I don't know how much people paid attention. But during the during the aftermath, when George Floyd was killed, there was a group of people and I don't know the the political background of it. I don't I really don't know who did what. But a small band of people over took a number of blocks, I think of Portland, Oregon, do you do you? Does that ring true with you? Like that makes sense that I might be right about that?

Unknown Speaker 51:34
Yeah, I think I heard something about, okay.

Scott Benner 51:36
Yeah, so they maybe I'm wrong about the place, but a small a small band of people took over a few blocks, they basically just took it for themselves and drove everyone else out. And they're banging the gong for this is what we're gonna show you what freedom supposed to look like, this is gonna be a free place, blah, blah, blah. Inside a two and a half weeks, there was one of them splintered off of the group started, you know, talking about the leadership, somehow, they hunted the person down with a gun and killed them. So these people are telling you, oh, here's how the world should be. It should be free. And we should do whatever we want. And then some guy tried to do whatever he wanted. And they're like, no, not if it doesn't agree with me, you can't do whatever you want. It's the nature of people. Cameron, you're 30. And you might not agree with me here. Everything's power. Some people have it, and everybody else wants it. And that's life. It's life in the animal kingdom, it's life with people. People do not like to feel powerless. Sometimes in the middle, you get very kind people who don't care about power. And they are, they are the most lovely people you'll ever meet in your life. But most people are either have it and trying to hold on to it, or don't have it and are trying to take it from somebody else. And it is again, it's a false narrative. Everyone has power. You don't have to go take someone else's. I can have a popular podcast. And so can you. It's not all or nothing. It doesn't have to be me or you. That's a misnomer. But it's how people's minds work. And I think it drives a lot of this because there are a lot of lovely people who I think could do what you said ban together, make good thoughtful inroads into changing minds and lower the price of insulin. Maybe could because let me ask you a question. If the price of insulin seemed fair, would they have a problem with the words taking the money for the from the companies that make the insolence though? Where would they find something? Or do they just want to be upset? Would they or would they be okay, cool. That seems fair. I think, you know, somewhere in there is the answer. And yet, you made this earlier point that everybody doesn't have access, even like you can't just make somebody jump through 7000 hoops to get their free insulin right? It has to be super simple and easy. And you have to reach them with that information. And I don't know that even that's possible all the time. Don't I mean, like maybe it's maybe everyone's not saveable is is is a bigger problem.

Unknown Speaker 54:12
It definitely could be a problem. And I think, to your point earlier, too, that amongst the a lot of the people that were doing this form of advocacy, I actually had some conversations with some of the men they are genuinely nice people because I didn't one of the things that I try not to do is to put myself in a position where I am just going to be berated and become a target. I like to hold discord have a conversation to understand both sides of the the aisle so to speak. And so in speaking with with many of them, I think we all understood that our end goal is the same we all want people to have access to this liquid that is vital to our lives. Yes. All right. And that that was The unifying effort I just we were just not reaching each other on how and why it's also important to sometimes, I guess the best way to put this is sometimes you have to partner with your enemy in order to to do what to do is right. I think sometimes, it may be viewed as good trouble or Robert McNamara, a former Secretary of State, he was former Secretary of State, if I remember correctly, from my policy days, but he wouldn't say that sometimes you have to do evil in order to do good.

Scott Benner 55:37
I, I know a person who has been in the diabetes space for many decades, who told me once, I will take as much pharma money as I can, if it helps people. If I can take that money and turn it around and help somebody else with it, I'll take it every time, I'll go speak at their thing. If it does this, like they're going to get something and I'm going to get something but the thing I get, I couldn't get without them. The thing they're getting from me they could get from anywhere. So if someone's going to benefit from it, let it be me a person who's going to pass that benefit on to other people with diabetes? And I don't know, I listen, man, I could not afford to do this podcast if I didn't have that. And I don't understand how that doesn't make sense to people. I really don't. And, and you can think of it as partnering with an enemy or not. Listen, how about this, there's three companies that make insulin. You want them to stop making insulin? Because I don't I got a kid with diabetes, I'd very much like her to have insulin. And I wish there were more to your point. I wish it wasn't such a closely held thing where you know, it's a monopoly obviously, although I don't know the legal definition of Monopoly to cover myself, but it seems like one to me. And and I wish that there was more access. Because I think when there's no I think it's I think it's pretty obvious, right? When there's more companies doing the same thing, it creates it, it fixes the price, sometimes it brings the price down, because people are like, well, I can't charge as much for it. But this guy over here is charging less for it. And and that can be helpful. I I just don't understand. I don't understand where you think you're going to get lighting, pitchforks and torches, lighting torches and standing outside with pitchforks. It's a walled garden, you can't get inside of it. And there, there is a way inside. But I feel like it's been. I feel like it's been squandered already. Because, again, you're younger than me. But when using Twitter as an example, in Twitter got really popular, and it and people saw the power of it at first, if you had a customer service problem with any company in the world, and you had enough followers and tweeted that they were a problem, they would literally dm you a phone number and fix it for you. It took it was fascinating how fast that happened. And they'd say, look, we'll fix this for you, will you take that tweet down? That was that was always the agreement. And people knew it. And they pushed like that. And people still think that's how it works, except companies caught on that your tweet doesn't really reach anybody. And that they could ignore 999 of them for the one that was going to go viral. And now it's you're just you're you're yelling into the wind again, because they know they don't have to be scared. To be able to be perfectly honest, all of this pressure only has the power of how the person on the other side feels it. And so it's a little like, What's that? What's that fable about? It's the The Boy Who Cried Wolf, right? Like, like you can't just keep screaming and expect that you're going to get the same return every time. It's you know, exactly. And white noise at some point.

Unknown Speaker 59:03
It is just white noise. And even so even in the screaming, there's not clarity to the screaming either. We say access to insulin. Well, I mean, you could argue that there is access to insulin, everyone who can squander up the money to go by his link and have access to insulin. I think that that's what also gets lost in the overarching conversation too. It's not just access to insulin, it's what if there were an equitable price for every country for insulin, right? What if the price for insulin in America went down, but the price for insulin in Canada and in Europe went up by a small increase to sort of level the playing ground for everyone? That would be huge for a lot of people in this country. So I think sometimes too, and in our aplicaci, specifically for diabetes supplies and access to diabetes supplies, we don't often think about the big picture and what those things mean and we don't have a connection. message and one that's easily understood excess can mean anything. Yeah. Um, but affordability is a completely different conversation and a tiered

Scott Benner 1:00:10
conversation because everyone's level of affordability is different. I actually think of one of the things that I see insulin advocates do that I think is counterproductive to what they want it to be, is they'll they'll, they have insurance, right. And they have their bill in front of them. And I don't know making up a number. Look, I bought three months worth of insulin, it was $11,943. And they take a picture of it, put it online, except that right under that it says, you know, minus, you know, plan or whatever $20 and 15 cents. So you're telling me that you paid $20 and 15 cents for the insulin, but you're really upset because it cost $11,000 if you didn't have insurance, but you have insurance, because that's where that argument falls apart to the people you're trying to make the point to? Because I'm not saying it's I'm not saying it's not a reasonable thing to understand, or that it's crazy, that the you know, pharma company Jacks the price up at the insolence of $11,000, because of some thing that they've got going on with the insurance company that you and I don't understand completely, you know, all that bullshit aside, like, I'm not saying any of that makes sense. But I'm saying is that when you go out side of the diabetes community, or even out, you know, or even how you're going outside, trying to go outside of the community of people who don't understand that your stuff costs more than you end up paying for it, when you have insurance, your argument to those people falls apart immediately, because they look at it, and they say, Oh, well, I guess it's good, you have insurance. And then and then it stops being impactful to them. Now, if you really had to pay $11,000 a month for an insulin, oh, now you got an argument. You know what I mean? But but it's it's a false, it's a false narrative. And, and, to your point earlier, if you're not saying the right things, you're not going to make any headway. You have to say things that actually are meaningful that resonate, you can't just say things that look shocking, or look good in a tweet or something like that, it actually has to be meaningful, because when someone else takes it in, they go, that then that doesn't make any sense to me. You know, it's, it's, you see it in politics all the time, right? They set up this narrative about a person, and you hear him you hear about it for weeks and months, like, Oh, this guy's an idiot, he can't talk or whatever. And then one day you flip the television on, and there is no like, well, he seems to be pretty bright. He's speaking fine. Huh. I guess that wasn't true. And then your brain, lets go of it. And all that point that was trying to be made you about this person being inarticulate, or whatever, you know, whatever. It um, your brain, lets go of it right away. And that wasn't true. And now not only do you not believe that this person is not a good choice. But you now believe that everybody who told you that they weren't, maybe is suspect. And I just think that that's another thing that doesn't make sense to me pretending that you, you know, saying, Look what I would have paid if I didn't have insurance, but you do have insurance. So I don't understand the argument. Find a person who doesn't have insurance show me what they had to pay, or that they didn't have insulin because they couldn't afford it. That's your argument. Right? They're not this this is this is show, you know, I don't know if you agree with that. But it's always struck me as very strange.

Unknown Speaker 1:03:27
I definitely agree with that. And I mean, and to be honest, that they the insurance companies are more so part of the problem than the actual manufacturers to me. Yeah, I can cat I mean, I can give you countless stories of people who have spoken with who you probably have some of your own who have spent time crying on the phone with insulation insurance companies trying to figure out why am I benefits? Move this to pharmacy and this durable, durable medical equipment? And so yeah, I'm that insurance piece is definitely important. I think that's showing the a lot of people try to show the retail price of insulin, but that's not what you actually pay you you're paying what is paid after your insurance contributes? And based on the deal that your insurance has with those companies, then that's what you're paying? Yes. And so yeah, there was some some false narrative going around in that as well. And I think again, that was just another instance of how the person who can't afford insulin got lost in the store. Um, yeah.

Scott Benner 1:04:35
I'm sorry. I didn't mean to cut you off. Go ahead, please.

Unknown Speaker 1:04:39
No, I was finished. That person who can't afford insulin is nowhere to be found in that store. Because they are overshadowed by this one post about the retail price of insulin when you're actually paying a couple hundred dollars a month.

Scott Benner 1:04:53
Yeah. And so I'm gonna make a point that's gonna sound a little defeatist for a second, but I might just not be smart enough to figure out the right rest of it, but there is the government, and the government makes the rules, right? And then there's the insurance company who takes advantage of those rules. And then there's the pharma company who takes advantage of the rules, everybody's trying to do the best they can with the rules that are in place, then there's you at the bottom, you just trying to get insulin, test strips, whatever you need. So the problem is the rules. Okay, well, then you think, Okay, well, that's simple, we'll change the rules, except the politicians make the rules. And the insurance company and the pharma company are very likely impacting what the politicians are doing. Right. So they're making donations to campaigns or they're supporting people. It keeps everybody keeping the rules in a way where everybody can make money off of it. And you are left the only person in this country who's supposed to have power in this scenario. And you are the only person who does not have power in this scenario. And you can say, well, oh, just vote them out. But the next guy is going to come in, the next girl is going to come in, and then they're going to get a nice donation to their reelection campaign. And then you can say, Well, okay, well, obviously, what's the real problem, then Cameron term limits is the real problem, right? If people were only going to go in and do their do their job for a couple of years, and then could never run again, well, then they'd go in and do good work. You think until all the sudden somebody leans on somebody a little bit, you know what I mean? And, and people, there's all levels of people, man, like, you don't think a politician is never walked down a hallway and heard a whisper come out of a corner, you better vote this way. And then there's a little, you know, I know where your parents is live, that kind of a thing, you don't think the world works. And that's how the world works, my friend. And so you know, not everybody's out there, not everybody's out there with their Instagram account, trying to do the right damn thing. There are a lot of people who see money and want to keep money power, and they're not going to give your money back, because you're going to die. They don't care that much. And and I'm not saying that any of these entities together doesn't care. But I'm saying that when you mix this whole process together like this, there are enough opportunities for a few bad actors to soil the entire thing. And just put you in a conundrum that you can never break free of. And we think we're going to fix that by stopping some people who need insulin support from getting it because we're going to shut down beyond type one, or the jdrf. or whoever else. Like that's the way you're going to fix this problem. It doesn't fix anything, it makes more problems. That's all and maybe this problem is not fixable, my friend, and a very well may not be this this country been spinning for a long time. And I think the ironic thing is, I like to now that I'm older, I can see this, it's a funny thing you can't see when you're younger, is that when I see somebody 30 years old yelling about what's wrong with the world, I think to myself, yeah, I already knew that. In every generation figures that out as they come up, it's almost like you ever ever meet a guy 27 goes, I had a baby. Everything changed. I understand better now. Like, yeah, happens to everybody. But I'm glad today's your awakening day, my friend, but the rest of the world has known about this already. And in and that's what this problem is. And yet, you could make a tiered argument that this might be one of the best governments that's ever existed on the face of the planet. And look at all the problems it has.

Unknown Speaker 1:08:31
Exactly, and I definitely wouldn't. I definitely agree with most of that. And, to me, the real heroes, and the real advocates are those who are finding ways to get insulin to people who need it. And there are several people out there who are doing that I just so happen to come across one guy who lives in Canada and is willing if you know anyone who needs insulin, he's willing to try to ship them excellent from Canada where it's much cheaper to to get it I'm not gonna call his name on here, but those those people, people who are doing that, to me, those are the real heroes, and the real advocates because they're, they're making the change and impacting real people who need real help. And so,

Scott Benner 1:09:16
I believe in that so thoroughly, man, I really do. It's when I started this podcast podcast is almost it's gonna it's gonna start at seventh year in January. And I don't mean seventh season like I put 10 out a year like I put two out a week this thing's been up for it's going on seven years. And my entire goal when I started was that I felt like I had a process in place where if you followed it and it was very easy to understand and kind of implement, if you followed it, you're a one season two sixes. It just is and if you really understand the things that I talked about here with how I handle my daughter, no no diet restrictions, by the way, you can get my daughter's a onesies been in the fives for like six and a half years. It just and it just stays there, I just know how to put her a one c there. And I think other people can learn how to do it too. So that was my goal, right is to is to explain how I manage my daughter in a way that people could hear, take or leave if they wanted to, but at least they knew and that that, that resolved my guilt, you know what I mean, for having this information? And I wanted to share it, I still feel that way. I don't understand knowing something like this and not telling somebody else about it seems wrong to me. And so I think the idea is, is that somebody, then I have people come along go, you can't you can't do that. You don't you can't tell people how to Pre-Bolus That's dangerous. And I'm like, Well, what, you know, like what you mean, they just shouldn't know how, and I'm not telling them what to do? I'm telling them? Look, I bet you didn't know when you put in something doesn't start working right away. And you know, if you use a certain amount of time, and not to go into it all, but my point is, is that the that the machine that was the diabetes community disagrees. Overall, that I talk about stuff like this. And I have my hundreds of millions of downloads that tell you that this is what people want to hear about. Right? And and I just watched this space for so long, say safe, banal things to each other. Like, oh, you know, it's, you know, just just basic baseline stuff, stuff that anybody would notice a do each other like, hey, it's just a number going. That's great. doesn't help me, like it helps me in the moment doesn't help me big picture. You know what I mean? Like, you're not alone, great. I'm not alone. I'm still on the floor, my blood sugar's 35. And I'm scraping to get to a juice box, I feel pretty alone. What I'd like to know is how do I not get my blood sugar 35 happens to me four times a month, like that, to me isn't helping people, and you can pretend to help people. Or you can actually put your ass out there and do it. And I see these people on social media, they're motivated. I think they want good things for each other. I don't understand why they pick a team and act like that teams, the only team, it just, we could talk about this for 10 years, I can't understand that. And I mean, we can make the leap and say they want to be the captain of the team. And so they can't come onto my team and be the captain, they can't come onto your team to be the captain. So they have to start their own to be the captain. And the truth is, we're running out of teams, because pretty much everybody's got everything covered already. You know what I mean? And, and I think that it's just, um, I don't know what it is, if there's some sort of a human failing in there, and I don't think it's on purpose. I don't think it's as willful.

Unknown Speaker 1:12:46
It's this big view of diabetes, even though you hear some people say that diabetes isn't one size fits all. But a lot of people want to view diabetes, as a one size fits all thing. But that's that's not true. That's not true. on an individual level, it's not true on a cultural level, and on a race level, because there are different things that affect different race groups differently. I mean, I was not until my 20s. And finally had my first my second endocrinologist of color before I realized that for me, as an African American male, a one C is not the biggest number that I should be focusing on, I needed to put more attention in my time and range. Because a one C can be affected by my stress, and I operate at a very, I work in a very high stress job right now, the the retention factor for employees in the field that I work in about three years ago, was eight months before they quit. And I've been doing it for 10 years. And so I operate at a very high stress field. And so she recognized that and realize that, okay, for a for you, your agency is going to be on a slightly mild, moderate range. But if you're spending 85% to 95% of your time in range, that's where we want to get you to manage and I and that was my personal diabetes treatment. Right. And I have another friend who her diabetes educator looks at a completely different set of numbers that I hadn't even heard of until just six months ago. So manage her diabetes, and we view this diabetes as one size fits all and think that everyone gets the same amount of training but I think it was one of your podcasts a couple of weeks ago that was talking about glycemic index and a lot of people don't even in the diabetes community doesn't even understand that certain foods require you to give insulin at certain at different times and different ranges right in the mouth. Yeah. And how to account for things like fiber and protein and and caffeine. And so yes,

Scott Benner 1:14:49
you Yeah, getting injured and having sex and not having sex and being upset playing PlayStation you know, many kids bunched up into the 250s playing PlayStation. It's crazy. Exactly. And and no One, no one talks about it that way. And they should and and what works for you is not going to work. Listen, here's what what I feel like I've done here is I have a basic set of tenants that I follow that I think if most people follow them, they'll have better success than they were having. It'll be more consistent, less variable. What you do from there with it isn't up to me. I'm not telling everybody to do exactly what I do. I don't think that's even reasonable. I think there's some people listen to the show. And they hear like, Oh, that makes sense. And I think he's full of these two things. Great. If it helps you, I'm happy for you. That that's it. But at least the conversations being had at a man I had a man on the other day, a 20 year old guy is bipolar. And to hear his story about having diabetes and bipolar disorder, who you think's helping him? You know, I mean, there's, there's no, there's no bipolar disorder, slash Type One Diabetes helper, and you know, how he found the show, cuz some lovely woman came on and talked about her anxiety and that she was hurting herself. And this is what you do, you let people talk. And some people take great things from it. Some people don't, that's it, but you don't, you don't hear someone say something you disagree with. And then dedicate every ounce of your free time into destroying them, because they don't agree with you. And and I'm telling you, if you think you're doing something like that for an altruistic reason, you are fooling yourself. That is not how resolve happens. It just isn't it just makes people more upset. And listen, you want me to bring it into like today and and try to make it clear for you

Unknown Speaker 1:16:43
write down really quickly and just say, dumb it down a bit more than even though we treat diabetes, like it's a shirt size, small, medium, large. But you but we need to treat it like a shoe size. Right? You might be a 10 I might be a 12 or 11. And john doe might be a 13. Right? Yep.

Scott Benner 1:17:02
So it might be a little wider. Hey, what happens when you're left with a 12. And you're right, once an 11 and a half? Exactly which happens. But what I'm saying too, is that when you when you are so forceful with this is the right thing. You turn off people who don't exactly believe you, or agree with you, who are also really decent, nice people. And it, it just blows up from there. Listen, I know, a police officer, who has been a police officer for three decades, and is about one of the most lovely people I've ever met in my entire life. And he attaches his worth in this world to how he helps other people. And so if he flips on the news, and hears people say something like he shouldn't have money to do his job with. He doesn't hear the nuance of their conversation. He hears I gave my whole life to this. What are you doing? I've never been anything but a good person. I've helped so many people, I can't remember them all. I've lost so much time with my own family. My wife worries about me when I'm gone. My children worry about me when I'm gone. I worry about myself. I've heard stories of his life that are that are absolutely frightening. He's done heroic things that I would have run the other way from Cameron. And you may have to, you know what I mean? And and yet the person saying that other thing is making a really valuable point, a point that should be considered greatly. But it's the way you say it, and the way he hears it. That's important, because you're making sense. And he's making sense. And somehow we've all come to the conclusion that he either he's a racist, tall, or those other people don't appreciate his work. None of that's true. None of that is true. It just you can't come at something so harshly. That it's its intention is almost the cause a rift. It's like it's what they want sometimes. And, man, Listen, I've been online for a long time. And over the years, low carb people have come after me a timer to call me like a car pusher because I tell you about a bolus and I say eat whatever you want. I'm not in charge. I'm not your mother. Right? And I have and then you try to you start to learn how to talk to people to de escalate while you're talking. You know, and I think that is a skill that is not only hard for people to attain, it's not something a lot of people can do. And it's damn near impossible on social media. So yeah, man. Yeah. All right. Listen. First of all, you are really delightful. I have to say that right off the bat. I I'm so thrilled that I saw you and then I brought you on here. Because I've been holding this in for like three years. I really have because I thought I just thought what's the point? I'll say this out. out loud, and then somebody is going to try to, you know, make something of it. That's not here. Because for clarity, again, hundred percent, I think insulin cost too much money. I don't think anybody who needs insulin shouldn't have it. I just think that there are a lot of variables. And it is not as simple as make insulin cheaper. Like, it's not that simple it is, and it's not. And you've got all this, you've got the truth on your side, it should be cheaper. And you have to move it in the right direction. But I've even seen people organize well, Cameron, do we talk about this ever, people organize well have great intentions. And as they start rising up the ladder and getting more influence, they dirty up a little bit, and then they lose their way you ever see that?

Unknown Speaker 1:20:48
Definitely, I mean, and it's once you get enough influence, other people start to realize that you have some influence, and then try to buy into that. I think we talked a little bit about it in that when we were talking about politics, and politicians, and that's a piece of it, that we there's really no way to really navigate that. Because of course, the same companies that are funding these nonprofit organizations likely also have lobbyists, who are lobbying to politicians. And so I don't want to I don't want to come on to your podcast and make it seem as though it's a never ending circle, and that there's no way to win because I truly believe that there is a way to achieve in a way for everyone to have access to the insulin that they need to to live. But but on some levels, there are like we keep saying there's so many nuances and so many gray areas, so many different calculations, that we can't just we can't and we won't accomplish just by going and attacking things on our social media. And that's that's just not going to be the way that we win this war. And quite honestly, it's not even a way that we're winning the battles.

Scott Benner 1:22:02
Well, I think the thing that gets lost, if you could see behind that wall, right, of where those people are, who you're trying to impact that, and I don't, it's funny, because I don't agree with this. I just understand that it exists. So let me say that before I start, but, you know, what do they say? If you're, what's that thing, if you're, if you're not a Democrat, when you're younger, you're not something and if you're not a Republican, by the time you're something age, you're not paying attention or something like that. There's some saying about that. And, and what I think is that younger people have the grace that comes with having not had to get a mortgage on a home yet, or, you know, coming, it is impossible to describe what it feels like to get up on a Wednesday morning, when it's raining outside, when you're 43 years old, you've been doing this thing for 25 years, and you're just tired. And you don't want to do it today. But you'd do it anyway. You know, I mean, like there's, there's, there's something that comes with that. And it does make you more fiscally conservative in your head a little bit. It just does, it moves you in that direction, I happen to hold very tightly to my my social liberal ideas. I think they're very important. I don't imagine me changing throughout my entire life. And but at the same time, there are things about freedom and money, that I might feel a little more conservative to people about. In the end, I just think I'm a very kind of centrist person, I think I have views that kind of swing in different directions. I think of them as common sense views, the best I can do, right? But you need young people who are full of ideology to fight these fights. Because they're the ones who can really swing it in another way. And I think they can I think they will. But you have to pay attention to history. What do I mean by that? If the people who grew up in the 60s, the hippies of the 60s, right, they didn't change the world, the way they thought they were going to I actually think I'm not sure Donald Trump might be one of those people from that, from that era who grew up in that space, right? He certainly doesn't strike me as a hippie. So you have to understand that you have a finite amount of time to get out there and be young and make change. But the young people think older people are going to do it. And older people know. They're not going to do it. And they also know that younger people aren't going to follow through. And that's how you get caught in that quagmire. And it just so when you're out there, and you're banging your pots and pans and you're yelling and screaming, everything you're saying is 100% right and 100% legitimate, and absolutely the world would be a better place if you did it. The people behind the wall They're laughing like a idealists. They'll grow out of that.

Unknown Speaker 1:25:07
That's what the social media has done to the young generation. Because not to tie this back, keep tying this back to civil rights. But I see so many parallels between social justice and insulin and diabetes, justice, right. I agree. But we know the civil rights movement of the 60s was carried out mostly by teenagers and college students. Right, within reason their parents were working, trying to make sure that they can still maintain their homes, make make the rent? Yeah. Um, and and, quite honestly, in many cases, afford the bail for their suit for their children or being in prison over protesting. And so it was up to these younger people to carry the torch and to really make make the change. Now, were there some some older people who were sort of enabling them? Yes. But we know most of the groundwork was done by the Student Nonviolent Coordinating Committee. Right, all people in their in the early 20s. And that's going to be the same case here. But I think what has triggered now, it's, we think that we can accomplish the same groundwork that was accomplished in those movements in the 60s and in the 70s. through social media posting. And like you mentioned earlier, the algorithms aren't going to I'm sorry, which says

Scott Benner 1:26:22
it's not the same hard work that's not walking over the bridge and Selma, yeah, you know what I mean, it's not Yeah,

Unknown Speaker 1:26:29
exactly, it's not going to accomplish the same thing. There has to be some groundwork, there have to be some people who are actually on the ground, helping helping the communities after the after the fact too, because what one thing that we know is, I mean, as much as the media helped a lot of the civil rights movement, members of the Student Nonviolent Coordinating Committee, which stay in those communities to make sure that everyone did get registered to vote, that everyone made it to the polls, you know, and so there's this this thing that's that we've fallen into where we think that we just hop on Instagram and, and yell at these organizations and epi celebrities, and they will change that, eventually change will come but we keep forgetting that there has to be actual groundwork, helping the people who need the help. At the same time, there has to be us on the ground, making an actual voice and movement that is actually seen and not hidden by these algorithms to a certain small percentage of our population, who may be able to view this thing and neglecting the entire audience who can't see them. And I, I even to take that to a step further, I was having a conversation. I know we're over time. So stop,

Unknown Speaker 1:27:45
stop talking.

Unknown Speaker 1:27:48
Well, I was just having a conversation with some friends in the day. And I don't even know how we got here. But we all asked each other, have we ever met an indigenous person, a Native American person with Type One Diabetes? And it dawned on all of us that we don't, not only do we not follow any on any of the social media channels, but we've never met one in person to be able to talk about it. Well, then that sparked the conversation. Well, why is that? Well, we know increasingly now that there are more adults being while we know that indigenous people, I think the CDC 2019. report said that indigenous people make up a huge chunk of the diabetes count. But we also know that a lot of them get misdiagnosed, a lot of people get mis diagnosed with Type two, right? And so that was driving some of this narrative. And so even in that, like who we have access to, and who we see on a day to day basis, is indicative of this, this whole system of things that are intertwined and tied together that we just don't think about when we're thinking of when we're putting those posts out there about trying to make things cheaper, when there's so many other pieces to this puzzle.

Scott Benner 1:29:00
Yeah, there's, there's Listen, there's macro and micro, right? So there's change that needs to happen. And there's a need that exists right now. And they both need to be addressed. It not one, not one or the other. You can't You can't ignore all of those people who are struggling. And trust me they struggle in ways the one thing I try very hard to remember about this podcast is that I talk to people who you know, either are newly diagnosed and don't know what they're doing and I help them get back together or people who are like, you know, nice white ladies from Ohio, whose kids a one C's are in the low 70s and they wish they were in the low sixes those people right I talked to I talked to people who have insurance most of the time. And and fair enough. That's most people honestly. But there's the other people. their struggles are so much different than you know. I wish I wish I didn't have so many alarms overnight for my CGM. Can you tell me how to keep my my you know, can you help me with my Basal to keep my blood sugar more table. Like, that's very important. I'm not mocking that. But I met a woman in the Dominican Republic whose 13 year old son died of complications of type one diabetes. And the doctor said, you would have thought he was 75 years old. Because he just got diabetes when he was like six, and they just never did anything. That was it was his lot in life to die early. And that was that because that's the best they could do. I guarantee you, and I don't I guarantee you growing up, how many people in your family said Oh, Cameron has the sugars? How many times you hear that in your life?

Unknown Speaker 1:30:34
Right? I've heard it a couple times. Yeah.

Scott Benner 1:30:36
But you did. And that even is, like, we can say like, Oh, it's you know, it's cultural. But that's a nice way of saying that people, that black people get diabetes and expect their lives to be shorter. That's not okay. Hey, how's that? Okay. I don't know if you've I don't know how much of this show you've heard. But Anthony Anderson was on here a couple bit. It's probably been years ago. Now I don't remember. And he talked about his father growing up in the south with type type two, and how his expectation was, he just wasn't going to get the live as long as everybody else. And that was that. I don't understand that we don't feel like that's something that could be addressed right now, today, instead of tackling these big sexy problems that score you social media points and make you feel good about yourself that don't really change anything. You know what I mean? Like actually do something that could help mail somebody some Damn, it's probably illegal. But the guy from Canada like mail on the insulin, like, there's a guy who sees a problem and helps I listen, I'll give myself the credit. I see people struggle. They shouldn't struggle. I'm not fixing everything that's wrong with diabetes, but I can I am fixing the thing that's within my control to help with. I'm not I'm not grandiose about it. I'm not I don't think this podcast is gonna turn into something that it isn't. It does exactly what it does. It does it well. And it's really important. And I don't want or need to do any more or less than this. And and maybe you just got to find your lane sometimes, you know. I don't know. Was that racist? Cameron? I don't understand. I'm so old. Like I said sugar sound okay, right.

Unknown Speaker 1:32:15
Now, I mean, I've heard both black and white people use that term in the south. I don't know that if it affects I've definitely heard a lot of Southern white people use the word sugar's back in Alabama, right?

Scott Benner 1:32:28
I was fascinated to hear that Alabama could have been Atlanta. It was absolutely, that's astonishing how how little turns of the screws change things so so dramatically, you know, and maybe that's a good point here, like just trying to help somebody. And by the way, all the people are listening. And trust me, our people listen to the show camera, all the people are listening, there's nothing for you to do. Like, like, I can't point you to a place that's going to go magically help these people that we're talking about. So you're gonna have to have your own idea about how to help. You know what I mean? Like, if somebody needs to hear this today, and it's why I'm doing it. Somebody needs to hear this today and say, You know what, I have a friend in a state house, I bet you I could get them interested in this idea. You don't mean like, it's gonna start like that little spot, you got to start little fires all over the country. And, and that's how that's how you're going to get it to take off, you're not going to like the whole thing in on day one. And I do think, and I really don't mean to come down so hard on people who are of the social media generation, because I actually, I think it's a great generation of people. And I love the way they think and how free they are, in a lot of ways. But I think there's this idea that I can have an idea at noon, starting to count at three, by six o'clock, I should probably be famous or have this whole thing fixed. And if by nine o'clock it isn't all the way I want it to be, Well, that didn't work and I'll move on. Like there's such a feeling of like I talked about it earlier, right? Like you gotta you gotta do something, prove yourself level up, prove yourself level up it takes years not not hours, doesn't take days and take weeks. It takes years to you think this podcast was just popular when I started it. I killed myself to get it to where it is now. It's seriously in and so you got to get out there and do little things that are hard. And hopefully you can build them into something else and help another person and maybe that person will get on their feet and help somebody else. That's the listen you want to hear how liberals think that's how I that's what I believe. You don't mean start little build, give help people up so they can help somebody else up. So the only way it's gonna work. I don't know how you I don't know. I don't understand. People think they're gonna show up and talk a pharma company into losing a billion dollars next year. You're not thinking, you know, the difference between right and what's going to happen.

Unknown Speaker 1:34:55
Cameron,

Scott Benner 1:34:57
what do we not said here? It feels like a lot has been said.

Unknown Speaker 1:35:02
No, I think we've covered a slew of things, we definitely got into the gray, which I appreciate. And I just, I just don't want to leave the conversation with about remembering all of those people who are not seen and unseen and who actually are the ones who don't have access to insulin. Because those of us who cry, we want insulin for all, we're likely the ones who also have our insulin in our hands. And so just remembering all of those other voices that are not on social media who don't have time to do countless Google searches and to sit down or maybe have access to the internet, I think that's something that we didn't even really understand until just recently in the pandemic, where schools had to start parking buses, around their neighborhoods with Wi Fi hotspots, just so kids could have access to their insulin to their own access, instant access to the internet, to be able to do their schoolwork. And, and so we just remembering all of those people who don't have access to the things that we call basic diabetes care, who got left out and all of this messaging and all of this so called advocacy that we just didn't even think about, and it breaks my heart because there are people who are who are literally actually dying, while we are trying to yell on social media when we could have just given someone a spear violence. And and that's that's the fact of the matter.

Scott Benner 1:36:32
What do you think you have? Maybe you don't have a thought about it. But what do you think people could do right now immediately, to help.

Unknown Speaker 1:36:42
I think one thing that we we could do to help is to start partnering with some of our local community nonprofits, that there are tons of local diabetes, nonprofits that need assistance in helping with their, their populations and the populations that they serve. I think that's one thing that I see a lot on a lot of the Facebook groups is I have these old sensors, or these old tech strips, what can I do with them? Take them to some of those nonprofits, take them to your doctor's office, take them to free clinics in your area, because those are all places that can give those supplies out legally to other diabetics and people who actually need them and people who need access to those supplies, right? Yeah. Or even if you're changing insulin from say, humor log to another to no vlogging, you know, you're not going to use that extra fuel. Or think about that when you when you are giving that away. I think when we think about the online and the social media space, think about who's actually in the crowd that you're speaking to, and who's on the panels, these Instagram lives, these zoom panels, these Facebook Live and YouTube Live meetings, or even like you're doing now with this podcast. Who are you bringing on as the guests bring on more people of color, more low income people and more people who are just underrepresented in this diabete, in what has become this diabetes online community, so that they can talk more about the problems that affected them, particularly black women are a voice that is trying to forge their way right now in the diabetes space, because they have a much higher rate of being misdiagnosed and mistreated by by doctors. And so think about bringing them in because they can speak more to those to those stories. I think you mentioned Cerise, earlier, she's she's an excellent one, to think about in that space. And those are just some some quick ideas. But I think ultimately, we're gonna have to start thinking about the bigger picture and not just these snapshots of insulin is high, in cost less to yell to try to bring it down, we need to think about an actual strategy of how we can mobilize and how we can tell the story of Jane Doe and john doe who actually don't have access to this life saving liquid that they need to survive. And who don't even understand that there are differences in the types of influence available. Yeah, I would

Scott Benner 1:39:14
say to not let your voice be squelched. I think that, I think that, listen, you're not a you know, the person listening doesn't have a multibillion dollar acting career, right? You can you can say what you think. And if and if three or four people come at you on social media scrolling, there, you know what I mean? Like, just don't worry about it. It's it's it doesn't exist, it only exists. They're just talking to each other. Cameron started to say something earlier and I cut him off. But the algorithms that that feed you your information on Instagram and Twitter and or not Twitter, but even on Facebook. They these algorithms are made to keep you upset. So it just feeds you stuff that makes you upset and So if someone if you come out and say something completely reasonable, Cameron has said 15 reasonable things here today, I think I may have as well. And I think that if you listen to it in context, and straight through, you'll hear people who just, you know, would like people to put their efforts into good, good positive things that help other people don't lose sight of the forest for the trees, you know, that kind of stuff. But someone's gonna be mad about this. And we're gonna just have to let them be mad. And and you can't, you can't stop saying what you think is right. And by the way, maybe they shouldn't either. Maybe they have to keep saying what they think is right. But I can't, I can't keep watching it happen and not say anything, because it's normalizing it. Right? Is that fear that no one wants to speak up because they don't want to get yelled at or canceled is is normalizing the people who are skipping over societal norms to beat their point into, and I don't know whose head they think they're beating it into. Because, you know, I have round numbers here, Cameron, just round numbers. But I think there are about I think the world population is like 7.8 billion or something like that. Do you know, like 6.3 billion of those people are not on any form of social media at all. Only four and a half billion people have internet access. You know, there's like 100 and I forget what it is like it's over 100 million or something. 300 million Twitter users 100. And some million Instagram users, it grows all the time. But there's like 800 million people on tik tok like 2 billion people on Facebook, it's still only a small percentage. So when you're out there saying that this is what you think is right, you have to understand that most of the people living on this planet, not only probably don't agree with you, they don't even know you're saying it, and they kind of don't care. And so it's they have their own things that they're worried about. They're trying to find their insulin, you're busy off yelling about they need it, they're actually trying to find it. They're trying to pay their bills and clothed the children. And they live in places where there's no internet in their schools. My my brother, when COVID hit happened to be in between jobs, he was leaving one job and going to another one, he had a little gap of time. And so he took a job at the beginning of COVID. Just to kind of busy himself, in between, in between moving jobs, very common. And he takes this nice job at his local school district driving meals around. So even though the schools were closed, kids still had to show up at school to eat. And my brother would show up in the morning, pick up this food, take it to one school, he'd leave drive to another one Dre spent his whole day driving from school to school to school where people would walk through the town to get to their food. And he said that by the time it was time for him to quit that job and go back to you know, his real line of work. He said he wished he could afford to keep taking those kids those lunches, he wanted to keep doing that. He did not have any meaningful idea that he lived near so many people couldn't give their kids breakfast. You know, and and I just think that, I think that we lose track that social media has a way of making it feel like this is the whole world. And when three people tweet at you, it feels like the whole world hates you. But it's three people. And if I told you that three people didn't agree with you, or forget three people, Cameron, if I told you there were 1000 people in the world who didn't agree with you, you believe that right?

Unknown Speaker 1:43:31
I definitely believe what you

Scott Benner 1:43:32
damn right? You it wouldn't stop you from saying what you think though, would it?

Unknown Speaker 1:43:36
No, no. But

Scott Benner 1:43:37
online it does. 10 people tweet at us and we're like, oh my god, I'm a pariah. I have to stop and that's it. And then they're just, it's, it's a, it's a socially acceptable form of bullying for some reason. So well, I say screw that. Let's just do this camera. I'll blow up my podcast right here. How's that sound? And the truth is, I don't think I have I think that all we've said is common. I think what we said is common sense things. I think we're brought to it because of what we saw. But I think that this is a group of people who are not I don't think the people listen to this podcast or on Instagram or Tiktok or something. Overall I think there are a lot of people who are but I don't think most of them are and I'm doing this hoping that you people listening have some real inroads to places that have changed that need you know they can make change whether it's a congressman, a senator, you know something like that. You know, if you have that kind of power I I implore you to use it. I don't have that kind of power. All I have is the power to bring you something I saw on on online. And someone like Cameron who's just very well spoken about it and really understands it from what I think is a is a well earned perspective. Okay, man, exactly. talk too much.

Unknown Speaker 1:45:01
No, I just

Unknown Speaker 1:45:03
I agree with so much of what you just said and I but I don't even know that we don't all have that power as much as we don't realize how much of it we could be utilizing in different ways. One of the first things I did when I do when I'm moved to another state is I call my representatives call me a nerd, call me whatever you want. I have a degree in political science, but I call I called right when I moved to Texas, I called my state and local.

Scott Benner 1:45:31
apologize about that. You were just saying that as you move to Texas, you called your representatives.

Unknown Speaker 1:45:37
Yeah, I think that was something that I do when I move. And I don't know that everyone can kind of can take time out of their day to do that. But those who can, and who actually want to be involved in this fight. One of the first things I did when when I moved to a different state, I've now lived in Alabama, North Carolina, Illinois, Iowa, coincidentally, at the same time, and now Texas, and I called my representatives, as soon as I got here, I just introduced myself to their offices, to let them know who I was, what type of constituent I am, and what my issues are, and just to even just get my foot in the door so that they know that throughout the course of the year, I'm going to be hounding them to hold them accountable for these things. And I think, going back to your question, what could we be doing even small things like that? I'm just letting letting your your local speak, particularly your local officials and your federal officials know who you are. And that you have a cause that that is important to you. And that's one small thing that takes maybe five minutes for those of us who are privileged enough to have a phone to call our representatives to get in and just introduce yourself to their office, so they know their constituents. And so even even the small things like we're, who has the power, many of us who have a cell phone, and are privileged enough to do that, and make that small step, if you're looking to get into the space of becoming a true advocate for diabetes,

Scott Benner 1:47:10
I think that the people who need that help the most are the least paid attention to by the people who can help them. And so they need an advocate, they need someone to stand up and say, you're not paying attention to this problem. And it's a huge problem. You can't, you can't just ignore this over and over again. You have to do something here. And it takes not just one or two but everyone everyone listening to call and say, you know that to make those kind of overtures, and to realize that you're not as much going to be fighting for yourself as you are going to be fighting for someone else. But don't fight for that person in a way they don't need you to do it. That's a that's that's always you don't I mean, you ever, you know, yeah, guy needs to get out of the rain, don't offer him a sandwich. He's, yeah, yeah. This is what I think you need, and is very different from what what really has to happen. And understanding all the intricacies of a number of the things that we spoke about here today is helpful so that your effort doesn't just get, you know, pushed into a, you know, you're banging your head into a brick wall. And maybe just maybe some of these larger organizations have an infrastructure that allows them to understand these things. Maybe they're making decisions, you don't understand as an outsider, that might be the way things are done. And you can argue that the way things are done aren't right. And I probably would agree with that. But they are still the way things are done. And you have to, I think you're you have to, I just think change comes from within. It really does. I don't think you can impact things this big from the outside, unless you have a massive amount of money. And then that money really just buys you access. And then technically you're inside once you make the change. You know, so, you know you're sticking up for people who can't afford things. There's not going to be an outpouring of cash to do it with and it just I think it's the I I do agree with you. I don't want to feel cynical about it. I don't want to give people the idea they shouldn't try. Because I don't believe that's true. But you do have to understand the reality of what it is you're trying to do. You can't show up at a you know, and I don't know I don't I wouldn't run cameras because that seems sad. But I know people do run for fun like they go to like marathons right? You can't show up at your first marathon have it be 25 miles and you know, expect that it's going to take 15 minutes and then when it doesn't take 15 minutes go I guess I don't run a marathon anymore. Like this is a marathon. This is something that takes effort and it takes time. You're not going to fix it right away. That's for certain I I appreciate you doing this very much. I know that I reached out to And I'd had no idea who I was, I don't believe and that I was as shot out of a cannon in my message to you as I may have been today while I was talking, which I imagined could have probably probably did scare the hell out of you and make you not want to do it. But I just feel very passionately about about a number of these topics. So I thank you.

Unknown Speaker 1:50:24
Thank you so much for having me on, Scott, I really appreciate it.

Scott Benner 1:50:26
No, I loved it. I'm putting it up this weekend, so people can listen to it over the weekend. I want to make sure about your handle again, and it is young, underscore gifted and black and as a nd. And your names right on their camera. And so people will, people will know that you I just again, I think you are one of the few people that I've seen talk about things that most people don't do directly. And I just thought you did it with a lot of grace. And, and from a common sense approach that I really I very much appreciate. So I appreciate you being there to see honestly, because I don't usually do this. I don't know, I usually don't ask out people who I just met camera. But I'd like to be married to you. You're good people. Know, you're welcome. Can I can I take a couple more minutes from you and ask you like a serious question. You talked a little bit about your about your, your college experience. And is that like, but that's not enough to like, What makes you so clear headed? To just accept that you're clear headed for me take that as a compliment? And then let that go? Because I hear you being kind of like, Oh, no, but but you are. How does that happened? Like, what's your makeup? What happened to you in your life that puts you so like firmly down the middle and understanding?

Unknown Speaker 1:51:56
I honestly I don't know, I guess I would attribute it to my parents, I grew up in a home where I was taught to understand more than just my own opinion and that you can't get anywhere just understanding your own opinion, you need to seek out and learn from other people. My father is a my father and mother are very huge people, person, people, people, I guess would be the way to say much more than I am. But that's just how I was raised. And I think they would call me an old soul, someone who has always been sort of someone who identifies as older than he really is. And I think my friends would even attribute it to the same because in college my nickname was uncle cam.

Unknown Speaker 1:52:48
Five years old on your friends.

Unknown Speaker 1:52:51
Exactly.

Unknown Speaker 1:52:53
And so there's just the upbringing that I brought in, or that I was raised in and then I not to tell too much about myself because I do like to pump up you can hear telling me that my blood sugar's dropping? I did hear it. Um,

Unknown Speaker 1:53:09
you tried to keep a little nut butter?

Unknown Speaker 1:53:14
Yes, yeah. Um, but um, even in my upbringing in and I was brought up in the church and for a long time, I was a young preacher and a junior Deacon. And so I was very much tied to seeing the needs that people in the church needed and, and that also tied to who I am and sort of my beliefs and how I believe that we can help people.

Scott Benner 1:53:37
I well, however, you came to it, I'm, I'm happy you're at it, you should be running for congress one day. And, and I just listened. My opinion is mine. And people listening might disagree with me, and that's fine. But I, you know, I don't I genuinely brusque at calling myself, like an elder statesman of this space. But I've been around a really long time. And I'm accustomed to watching people make a little sense. And then not, and then, you know, all of a sudden, there's somebody I'm thinking of in my head, just 95% of what he says, I'm like, Man, that guy is right on and then the other 5% of is just batshit crazy. And you know, and you're just like, haha, so close, you know, like, he's almost the one and that's just again, my opinion. But, man, I just I felt so good about how you spoke about this stuff. And that I could feel that you were seeing so many different perspectives at one time, and I'll tell you that that's, you know, there's a few things I'm proud of. One of them is that I think I can see things from different perspectives and and give all of those different perspectives my best that I can equal weight, because I genuinely don't believe that everything I think is everything. I just think this is the stuff that I've been exposed to so far. I love this podcast because I talked to so many people People who have experiences that are just so incredibly different than mine. And it's my favorite part of the show, like, I bet you if you asked other people, what's the best part of this podcast, they'd be like, Oh, they talk about management stuff. And it's great not like I love hearing from people. I just, I would never in a million years get to know. And there's so many names that are running through my head right now of people that I've spoken to, and I'm excited about the people I'm going to speak to in the future. I, I love that feeling of growing my understanding of things, because I don't I don't understand nearly enough about anything. The only thing I can tell you about this thing specifically is you need good hearted people with good intentions, who are not waylaid by the trappings of social media, or the desire to be in charge of something or whatever else those you know, it's very, very popular right now to talk about dopamine hits, you know, through social media and phones, but that whatever that is that you get when when your phone tells you someone agrees with me. I've been liked again, you know, like, whatever that is, I shouldn't even make fun of it. Because it's probably a an addiction, to be perfectly honest. But we can't have people motivated by that. While we're talking about serious things all the time, you know, and, and, and I think those people could do good things. And I hope they do, honestly. And I listen, I could be 100% wrong. Screw me. Right. But, but this is how I say it. So I appreciate you coming on talking about it. I really do.

Unknown Speaker 1:56:28
Thank you again, Scott. I really appreciate it our conversation today. It's been awesome. Just a two, one here some validation that me and my small group of friends aren't the only ones who are who are thinking this the same way but but to just to be able to share a glimpse into some of the voices that all often go unheard with was huge. So thank you for that opportunity.

Scott Benner 1:56:51
No, it's my pleasure. It really is. Hey, huge thanks to Cameron for coming on the show. Don't forget to find him on Instagram, young underscore, gifted and black. Give him a follow check him out. Thoughtful guy. His ideas are clear. I love his focus. I love his attention to perspective detail, you know, not just thinking about things from his perspective. And I don't know how much this means to you. But it means a ton to me. Being able to set aside your the things that trigger you in a conversation, you know what I mean? And stay focused on big picture. I think that's an uncommon trait. I think Cameron has it. Plus, he's really good at making food and he puts up really great pictures of it. Oh,

Unknown Speaker 1:57:44
my gosh.

Unknown Speaker 1:57:46
Is that a sourdough bread?

Scott Benner 1:57:49
Cameron, you made a sourdough bread from scratch. It's beautiful. All right now you definitely have to follow him. Young underscore gifted and black. Go find Cameron. Thanks so much for listening to the Juicebox Podcast. We'll be back soon with more episodes. I'll be back soon. Who's we? I'll be back soon with more episodes. Literally just me making this podcast. I'm like, Hey, we're coming back.

Unknown Speaker 1:58:14
We're

Scott Benner 1:58:15
Alright, listen, go live your lives. I'll talk to you soon. One last thing, if anything you heard here today kind of lit a fire under you. And you have access. I know I said it in the podcast episode. But if you have access to people, that can make change around anything that helps people with diabetes, test strips, insulin access insulin pricing, meters, things that people need if you know a congressman or a state senator, anyone with that kind of power, or if you know people who can shine a light on this stuff, that act of explaining this to them could be your advocacy. You could help like that certainly better than ranting and raving about it on Facebook. Small meaningful acts, not huge, splashy things that you think are exciting or, you know, hashtags. I'm gonna, I'm gonna rant and rave about somebody I'm gonna I'm gonna cut somebody down here prove to everybody how, how much they're not doing that. That's not how these things work. That's how it's how people make a name for themselves online. It's It's not how change occurs. change occurs from within. And you know what, even if it is a viable solution, that process of denigrating people to make your point? I don't know. It doesn't seem like a valid long term solution. I think it just makes more enemies. And I think it's incredibly odd to want to create combat between people who are all trying to help us people with type one diabetes. How did that happen? How was their civil war? Everyone wants the same thing. Work together. Are you busy fighting with each other? It's meaningless to waste the time. It's not going to get anybody anywhere. there's a there's a civil way to do things. And it's important to do things civilly. Again, that is really just my opinion.

Unknown Speaker 2:00:24
I guess you could do whatever you want.

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#394 Perspective Ceiling

Kari is Amanda's mom and Amanda has type 1 diabetes, Down Syndrome and Hypothyroidism. 

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - Google Play/Android - iHeart Radio -  Radio Public or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

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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, welcome to Episode 394 of the Juicebox Podcast on today's show, car is here, and khari has wisdom beyond her years. More on that in just a second. This episode of The Juicebox Podcast is sponsored by Omni pod, the tubeless insulin pump, you can find out more about the Omni pod and receive a free, no obligation demo of the pump in your home by going to my omnipod.com Ford slash juice box. Today's show is also sponsored by the dexcom g six continuous glucose monitor. dexcom.com Ford slash juice box is where you're going to learn more about the device that we use here in our home to make great decisions about insulin.

Unknown Speaker 1:01
It's early here, where are you at? Seattle. Oh my god,

Unknown Speaker 1:05
it's six o'clock in the morning. Or?

Unknown Speaker 1:07
It is because I wasn't expecting like everybody in my house to be home with the whole COVID thing. So I thought I'm just gonna be great. My husband would be at work, you know? Yeah.

Scott Benner 1:19
whispering in a corner, right?

Unknown Speaker 1:21
Exactly. Trying to be quiet and wake nobody up. But

Scott Benner 1:24
I'm actually doing the same thing. It's nine o'clock here. So my kids have gone to a nocturnal existence.

Unknown Speaker 1:34
I know. Well, good for them.

Scott Benner 1:38
Okay, you're gonna meet khari in just a second. But here's a little bit about her. She's the mom of a child who has type one diabetes. A daughter, Amanda, and Amanda also has Down syndrome. And hypothyroidism. You're gonna learn a lot in this episode. Please remember, while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical, or otherwise, please always consult a physician before making changes to your health care plan, or becoming bold within.

Hey, are you looking for a great type one doctor? Or do you have one to share with other people? Check out my web page juicebox Doctor podcast.com. It's an ever growing and wonderful list of practitioners that have been sent in by the listeners. And if you're looking for those diabetes pro tip episodes, they begin at Episode 210 in the podcast, or you can check them out at diabetes pro tip.com. Last thing, if you're listening in an app right now, please remember to subscribe. Just push that button.

Unknown Speaker 2:51
My name is Chari. I've been married for almost 25 years. I've got a son that is 20. And I've got a daughter who is 18, who is a type one diabetic. And was also born with Down syndrome.

Scott Benner 3:07
You've been married for I've been I think I hold on a second. What year were you married?

Unknown Speaker 3:12

95. Huh? You have me by a year.

Scott Benner 3:15
Oh, well done. Thank you. Oh, you rolled right into that second kid? We waited?

Unknown Speaker 3:23
Yes, we did roll into that second kid. And we were thinking about maybe having three but yeah, the two kind of stopped us.

Scott Benner 3:30
Yeah, we stopped that we very similar situation. But may I be bold and ask? The Down syndrome stopped you?

Unknown Speaker 3:38
Well, you know, it kind of did but only because, you know, I? By the time? Well, I told my husband, we can have three I'm good with three, but I need her to be walking because I didn't want to have the toddler and the carrier. And a newborn, you know. And so by she started walking around three and by three, you know the five year old was it nappy, man. I know we just have a way to start over. Are we good?

Scott Benner 4:11
Hey, listen, I had a very similar conversation with my wife. Our children are almost five years apart because I said that one needs to be heading to kindergarten. Like I said, I said it'll be cool if he's around for like the first year when the baby's you know, sort of like a you know, like a big potato like then it's easy, you know that? I would I'd like him to be able to connect with the next child, whatever it ends up being I was like, but as soon as that kid starts moving around, it becomes more trouble. I'd like the other one to be in school if that's okay. That's how we literally one of two things we've planned in the entire time we've been together was exact exactly when to have Arden right for that for that very reason because of my concern that it would be difficult as I was to stay at home like my wife would have been like here take it It's fine. I I'm 48 and last night she's like, we should have another baby. She wasn't being serious. She saw a baby on television. And I was like she how freaking easy. She can say that. Because what she would do is like, you know, hand it to me and then be exactly I got to that baby us for a while you're watching TV like nine months. No, no, it's not what? No one. So, your son? Well, I guess at the moment, everyone's home, right?

Unknown Speaker 5:27
I agree. Toby. I my son is a sophomore in college. And then Amanda, who's 18 year old is a senior in high school. Okay,

Scott Benner 5:35
so my sophomore in college, I walked into second night to last night. And he's got this Um, I don't know how to describe it. It's sort of like a footlocker in his bedroom. But it has one of those raised up top. So you ever see those coffee tables where you can raise the top towards the sofa? Yeah, and I'm saying he's got a, like a Foot Locker in his bedroom like that. Right? And so it's next to his bed. It's been drugged across the room, and it's been lifted up to go along the side of the bed and there are drinks on it and snacks. And he's asking me 20 years old. How do I get Disney plus on this TV?

Unknown Speaker 6:10
Yeah, I hear you. I just

Scott Benner 6:12
started laughing at him. And he's like, What? I'm like, nothing. You just you look comfortable. That's all. I just what I was thinking was I haven't been that comfortable in 30 years, but that's fine.

Unknown Speaker 6:22
No, I feel like I've been doing this cooking. Since he's walked in the

Scott Benner 6:27
door and I present and then and he wants to be on his own schedule with a quick I was like, This isn't school man. This isn't a mess. I was like, wait, you can't roll up it on me at one a one in the afternoon and be like, What's for breakfast? Because breakfast was five hours ago. But I actually at the end of our conversation told him. I said I'm really sorry about you know, you missing out on school this year. And you know, his baseball season got canceled. And everything. But we've been going out to this, you know, piece of grass where nobody goes around here and throwing and hitting. And I mean, if I'm being honest, from my perspective, it's been very nice. So yeah, I'm sure. I'm sure he's like, I can't believe I have to play baseball with this old man. But I like it. Anyway, okay, so you and your daughter's finishing up high school from home too. Is that a bummer?

Unknown Speaker 7:13
Well, you know, we have been homeschooling for about seven years. So this is no different for her. Yeah, it was starting in about Middle School. And special ed department and I didn't hit it off. So

Unknown Speaker 7:25
gotcha.

Unknown Speaker 7:26
I had pulled her. Yeah, we had pulled her from school in about sixth grade. This is Yeah, this is normal for her. She's just thrilled that her brother's home. And

Scott Benner 7:35
yeah, I see that.

Unknown Speaker 7:36
You know, it's all good for her. It's Art inspro with

Scott Benner 7:40
Arden's on spring break, which is amazing that they gave them spring break, I pulled my wife aside, I was like, they never would have done this for us. If this happened, like 30 years ago, they would have been like spring break, you're already home, shut up and keep working. But Oh, no. But she's been working on her clothes. She likes to design clothing. So she's been doing that. But But I have one question, and then I'm gonna jump backwards for from it. How old was your daughter when she was diagnosed with type one?

Unknown Speaker 8:07
She had just turned 17. So we've only been in it a little over a year.

Scott Benner 8:12
Okay. Is there any sign of Type One Diabetes through your family?

Unknown Speaker 8:18
There is not we have some type twos. But no, no type ones. I did not realize. So my daughter was born with hypo thyroidism. Okay, which now I know is an autoimmune issue. And so I guess autoimmune issues tend to be more prevalent in people with Down syndrome. Okay. But does not necessarily mean type one. So I've only met a handful of people online that have Down syndrome and type one. So it's not just super prevalent. But people with don't intend to have more autoimmune issues in general

Scott Benner 8:58
care. You know, you've been screwed when you're in a an online chat group of six other people for health reasons, just like

Unknown Speaker 9:04
exactly like, well, this is fun. Guys.

Unknown Speaker 9:11
I know nobody get bored.

Scott Benner 9:12
Everybody has to keep coming. Yes, I want to go backwards and try to understand because your email to me, it struck it struck a chord when I read it. Because, you know, listen, you've listened to the podcast long enough, you know, I'm just gonna say what I'm thinking, right? Like, we're not gonna dance around, and I'm assuming you wouldn't be here if that was the case. The one says, Well, listen, back when malls were a thing and we were allowed to go outside with other people. I would forever see an adult with down syndrome, whose parent is with them and their parent. You can't even decide how old they are. Like you look at them and I think that lady's 110 do you know and and I always I always remark to my wife and avert it. And I think of this as a very loving thing. I always think that woman just probably feels like she can't die. Did you know? Right, right, like, like, I like I have to stay here as long as I possibly can. And I want to know what that's like, like, I really want to understand before we get to the diabetes, what it's like for you is as, as her mother and what it's been, you know, I want to know what it was like in the beginning in the earlier years, and how it's progressed through time and what your responsibility actually looks like. Do you think you can talk about that?

Unknown Speaker 10:35
Yeah.

Unknown Speaker 10:37
I would agree with you, we do feel a tremendous amount of responsibility in the world is is really scary place for somebody that's that vulnerable. So you kind of feel like you have to be their sounding board and there. I mean, she's amazing. My daughter is funny and adorable. And we joke that she could run for mayor because she greets everybody, you know, how are you? How are you? And you know, but she doesn't have a whole lot of decision making skills that are great. So you know, in a world that you don't even want to send her out the door by herself. It's hard. And it's hard to think about the future where somebody could potentially, you know, absolutely take advantage of her.

Scott Benner 11:33
So in like real terms, if she came up to me and was friendly, and I had designs on doing something wrong to her, I could be friendly back to her and then just suggest that she and I go somewhere. And

Unknown Speaker 11:46
Oh, absolutely. And she'd be like, sweet. Yeah. Yeah, let's do it. Yeah, I gotcha. Yeah. Yeah. I so that's, you know, and it's just, it's scary.

Scott Benner 11:59
As a parent, no, I, I listen, I have a son who doesn't have Down syndrome. And I sent him out the door and felt almost exactly the same way. Except my feelings were reasonably baseless. I was just worried. I mean, like, I wasn't right. Yeah. There wasn't a real thing. I was concerned about you, you have a real a real thing. So tell me what that looks like. in public, are you just, you're with her constantly? I would imagine

Unknown Speaker 12:25
constantly. Yes. Yeah.

Scott Benner 12:28
And is that at any point? Is it something you've like giving yourself over to? Because I'm assuming there's a fair amount of your life that you've? You know, usually we talk about backburner in our lives while we're while we're being parents. But there's no backburner for you? Did you just give it away? How do you how do you handle it in your mind?

Unknown Speaker 12:51
Yeah, in my mind, that is exactly what you do. Because what is the option? I mean, I can't sit around. And I mean, I will tell you that when my son left for college, that was kind of a it was like a reminder, almost a slap in the face, you know, like, Oh, this is what it could have been like for her. And, you know, like, my husband and I actually liked each other. We wouldn't mind being empty nesters at some point, you know? And it was just kind of like, Oh, no, this is no, remember, this is reality. Nope, she's gonna be here and words. Three of us.

Scott Benner 13:28
Though, I'm not talking about intellectually, just raise your level of responsibility. What age would most of us who have been kids relate to your day to day activities? Were there like, is it? Is she you know what I mean? Like, is it like being with a 10 year old like that? That's what I'm wondering.

Unknown Speaker 13:51
Yeah, no, she can, um, well, I say she's a really odd mix of an 18 year old. I mean, she absolutely has an attitude and would like to be, you know, on her own and do things independently. You know, like, I do still kind of help her shower, so she can get in, she can turn the water on, but just motor wise, she doesn't do a great job washing her hair. I mean, I still have to prepare food for her. She can't. I mean, she could make like a peanut butter and jelly sandwich with a little bit of assistance. But she's super petite. And so like, she can't even reach our microwave. I wouldn't trust her with the microwave anyway. But like, she can feed herself and she could toilet herself and, you know, so it's not I wouldn't say it's hands on the whole time. You know, I don't even know what age to put her up. But I'd see. Yeah, I'd see. Probably 10 ish.

Scott Benner 14:48
Gotcha. And then the she, what's her level of under, like self awareness about her situation.

Unknown Speaker 14:58
Zero sleeping. I mean, she knows she's amazing. We've told her She's amazing. She has no idea she has Down syndrome. Right? I mean, if you said, you know, do you have Down syndrome? If she looked at you like, What are you talking about? You know,

Scott Benner 15:13
and it's not keeping it from her. She just doesn't see herself?

Unknown Speaker 15:16
No, she's just No, not at all.

Scott Benner 15:18
It's um, it's, it's nice, actually, because the more people I talked to, the more I feel that from people, I say this a lot, but I go back to. I was interviewing Sam fold the first time and I asked him if he was ever concerned that his kids were going to get it. And he had a response that was so similar to what you just said. Like, why would it matter if they got it? I have it. I'm a person. You know? You mean? Like, it's just a very? I don't know. It is what he said. That moment always stuck with me. So you said she's very much like an 18 year old.

Unknown Speaker 15:55
Boy, boys.

Unknown Speaker 15:58
Oh, for sure. Gotcha.

Unknown Speaker 15:59
Yeah. Justin Bieber. Shawn Mendez.

Unknown Speaker 16:04
Yeah, I see.

Scott Benner 16:05
I see. Is there Yeah. Yeah. Does she do any social stuff with other kids with down syndrome?

Unknown Speaker 16:13
We have an amazing support network here.

Unknown Speaker 16:18
Yes, that we have. I mean, we have a group that just does social things. And then she's in a music class. And she has played baseball for the last. I don't even know how many years probably 12. She plays soccer. swimming lessons, you name it. Yeah, she's super social. And we have a great group of kids. But, you know, why would Paul like kind of her core friend group?

Scott Benner 16:45
Okay. Now, so now I'm being serious is there? Is there a thought ever that one of those boys is going to ask your daughter on a date? Or she's gonna ask someone on a date? And they're gonna say I want to get married? And is that something you think about?

Unknown Speaker 17:03
It is somewhat something we think about, but I don't the reality of it, I think would be very tricky. Well, especially now with the type one. Yeah, I mean, before the type one, I would have said, you know, very easily I kind of a group home situation, obviously, with people we knew, you know, that sort of thing. But

Unknown Speaker 17:27
now, it's a little bit trickier. I would do that piece. Right.

Scott Benner 17:32
Right. I'm just, by the way i, is it proper to always say Down syndrome, or is there a shortened version you use? Like, what's the, what's the word? No, it's just downs.

Unknown Speaker 17:45
though. No, just a DS, maybe. So

Scott Benner 17:51
I'm thinking of like, every time I refer to our nose like Arden, come here, we have to change your pump because of your type one diabetes as big as a lot. Are we always saying that?

Unknown Speaker 18:01
And we never say Down syndrome. So it's not a thing for us. So.

Scott Benner 18:05
Right, and but when you're discussing it outside of like, with me, I'm a lay person for this, right? Yeah. I was just like, I kept thinking like, any second Kerry's gonna say like, DS, man, it's DS or something? I don't know. But anyway, okay. So being married in a group home situation, meaning someone taking care of the bigger things, like you just discussed about washing or meal prep. You think she could have been to but but the diabetes piece, you know, it's so funny, you have this same concern every other parent, kid with Type One Diabetes, as

Unknown Speaker 18:37
I know, it's very odd. And I hear I mean, I've listened to so many podcasts, because we don't really know anybody that has it. And we're still new enough, but I'm just trying to get as much as I can, you know, information wise and practical living and

Unknown Speaker 18:57
all of that sort of thing. But

Unknown Speaker 19:00
you know, it's just mine isn't going away. It's like, I got it. Yeah. Well, I mean, obviously, no, but

Scott Benner 19:08
no. Yeah. As far as time goes, right. Yeah.

Unknown Speaker 19:11
Right. Because there's no handoff like, there's not going to be Oh, if she's just in this trade, or if she's just this age, or if she's just, you know,

Scott Benner 19:21
yeah. I'm just trying. I'm just trying to get to this point to this point to this. And you're you don't you're just trying to every day,

Unknown Speaker 19:27
and we don't have that point. Yeah.

Scott Benner 19:29
I really do. I, you know, yeah, I think I've mentioned it a time or two. But when I first became a stay at home dad a very long time ago, it was not a common thing for men to do at the time. I think it's more common now and becomes more common as time moves forward. But when I was doing it, I got looked at very oddly. And I I really wanted to do it, but I was my expectation of what it was, was more about like functionality. Like, I'll feed that person and clean those clothes. And like, I felt like a job to me when I first started doing it. Until I recognize the things my son really needed that my, I always thought my wife would have just known to do, don't mean that I sort of had to learn to do. And then once I was doing them, there was just this moment where I felt like oh, my God, is this the rest of my life? Am I gonna get up every day and do this forever? And what are we gonna have another point, I'm going to start over again. And I just had to find like real meaning in it, in my right in mundane things. And I always use just cleaning the house as an example. But, you know, it sucks. Like it just the laundry sucks and cooking. And every morning of my life, I load a dishwasher and run it, like every Saturday, Sunday, Tuesday, doesn't matter, I get up, I feed those dogs. I take those dogs outside. And I say those dogs because they're lovely, except I take care of them constantly. And so they become a task. And instead of a dog, like if somebody takes care of your dog for you, what you have is a puppy that you can, you know, but when you're the one taking care of it, you're the one outside when it's 12 degrees, thinking like oh my god, just pay on anything. So we can go back inside, please. You know, and then it's then it's the next step. And the next step, and, you know, the floors need to be cleaned. And you know, and then you have to sweep the kitchen and go grocery shopping. And none of it is fun. Right? And I thought one day, but it is building a solid base for my kids to grow up in, they have an expectation about cleanliness and preparedness and stuff like that. And that's really valuable to them. And I had to find real like, satisfaction in that. You know what I mean? And, and I do, yeah, and I absolutely did. Because yesterday, I realized when my son came downstairs and I was in the kitchen washing dishes, there's something comfortable about the fact that I'm there to him. Did you know what I mean? Like, I feel like in the back of his head, he's like, that guy's always gonna be in my house, doing something supporting me. And it's sort of like a touchstone for him. And that makes me happy. But it took me a while to get to it. And I was really only having to talk myself into it on a 20 year gameplan. You know, like, I am dying to know like, what are the conversations like between you and your husband around those sorts of things. And where did the diabetes care fall to

the on the pod tubeless insulin pump is a mainstay in my daughter's life. She's been wearing it now, since before kindergarten. See, I'm starting to lose track of the years but she's 16 now. So for a very long time, my daughter has been wearing an omni pod tubeless insulin pump every day. And it is an absolute friend on the journey with Type One Diabetes. I don't know if you understand the nature of tubeless, or how much you understand about pumps in general. But every other insulin pump, with the exception of the Omni pod has a piece of tubing that goes from a controller that you have to wear like on your belt or in your bra or you know, in your pocket. And then the tubes go from that controller all the way to an infusion area on your body. Not the Omni pod though, on the pod is small and self contained. it adheres and that's it, when you want to talk to it. You just use the personal diabetes manage a little PDM. And then you can put it away and stick it back in your purse or whatever you want to do. But it's not connected to the pump by a tube. And that gives you a lot of freedom. Freedom to play sports unencumbered, or to take a shower. People with a tube pump have to disconnect their insulin to shower to swim, but not on the pod. You can just jump right in. The greatest part about this is that you can get a free no obligation demo of the Omni pod sent directly to you so that you can wear it and see for yourself. You do that by going to my Omni pod.com Ford slash juice box, fill out the tiniest bit of information about yourself. And just like magic, a whoosh, it shows up at your house. The whoosh was magic case you were wondering, or the mail, which is also kind of magical when you stop and think about it. pay somebody a couple of cents and a letter shows up anywhere. That's magical. It's not quite as magical as not having to inject three times the pizza, but it's pretty close. Now what are you going to want to compliment that beautiful Omni pod that you're wearing? A Dexcom g six continuous glucose monitor. This thing is the next level of understanding. You're used to testing your blood sugar and seeing Hey, my blood sugar is 150 great. Is it 150 and rising is at 150 and falling? Is it stable? You know what does this mean? My bazel not strong enough, should I have Bolus more for my meal? I don't know what to make of this 150 number. But with the Dexcom you see the speed, direction and number of your blood sugar whenever you want constantly, and you can see it right there on your iPhone or Android or on the Dexcom receiver. Let me look right now for Arden's blood sugar. Oh, Arden just ate a little food, her blood sugar rose a bit. She's 139 but I can see that she's coming back. So I don't feel like we need more insulin. I think we did a good job here. I can see that right here on my phone. Arden is taking her PSAT right now. How do I know that right? How come she's not here and I know that Sharon follow Dexcom g six users can have up to 10 followers. They can choose a school nurse or a friend or a parent, sibling, a loved one. Or if you're a little child, mom could be watching you while you're in gym class. The possibilities are endless. dexcom.com forward slash juicebox Get started today. I'm going to tell you right now, no BS Dexcom is one of the best decisions My family has ever made. You can find out more about all the sponsors in the shownotes of your podcast player, or at Juicebox podcast.com. But if you want that free demo of the Omni pod, it's my Omni pod.com forward slash juice box. And dexcom.com forward slash juice box to learn more about the Dexcom g six. I almost forgot. Veterans United States veterans through the VA Dexcom is now covered at 100%. Go to my link fill out the form. Find out more. Let's get back to Chari. What are the conversations like between you and your husband? around those sorts of things? And where did the diabetes care fall to

Unknown Speaker 26:48
bow? When she was born? We just kind of braced it. And in our conversations. Well, that sounds kind of bad. But you know, we'd say worst case scenario, she's with us forever. But that's not a worst case scenario for us at this point, you know, but like in our mind, that was like, Okay, if the worst thing happens, she's here, right? I mean, and we do our lives with her, you know, as a part of it. And so we've always been fine with that. Now with the type one and even when we were in the hospital after she was diagnosed, we just kind of looked each other like our world that was kind of small, just got a little bit smaller. You know it the tether got a little bit tighter.

Unknown Speaker 27:42
And we you just have to roll with it.

Scott Benner 27:46
And for learning and karma reasons you've never overthrown like a SubSaharan country or you don't run drugs through like Guadalajara or anything.

Unknown Speaker 27:56
years ago, you know?

Unknown Speaker 28:00
There's no you

Scott Benner 28:01
don't you don't you don't kill homeless people for sport or there's nothing like that in your background, right?

Unknown Speaker 28:07
We don't know.

Unknown Speaker 28:10
Yeah, yeah. No, so pretty much the care is on me. I mean, my husband's working full time. Yeah. Um, he's absolutely willing to do anything you know, and we still soundboard off each other and hey, I learned this what do you think about when we try that? And you know, but I mean, we kind of joke that I am a stay at home mom. But now I become a stay at home pancreas because, you know, I can't go anywhere without her and the PDM and a bag of stuff. You know, I tell you stay at home. pancreas is a strong contender for the title of this episode. Yeah, right.

Scott Benner 28:50
There you go. What about the What about some? What are some of the stuff that involves? You're like, you know, bathing like this that? Does your husband stay out of that? Or does it not matter? Does he

Unknown Speaker 29:00
know it doesn't matter? He's all in yet. He's awesome.

Scott Benner 29:05
Arden said Arden said to my wife the other day she goes, even if I got a boyfriend right now, dad still gonna be the guy that's seen my ask the most. And I laughed because she wears CGM that are hip. And yeah. And she, you know, they're in a weird position. So she's like, Can you help me put this on? I was like, sure. But she's, you know, becoming a lady. And, and, and it's, we had a short conversation about it one time. I'm like, are you alright with this? And she's like, I don't want to put it on myself. And I think gotcha. All right, right. I'm gonna put it in the wrong place and violently okay. I'm like, it's right here. I think you could do it. And there's going to be a day where she's just like, that's enough. You know what I mean? But yeah, she doesn't shouldn't care. So

Unknown Speaker 29:52
that's a bad night. Just get it done. Just get

Scott Benner 29:54
it done. And so in your husband's eyes, just a little girl and then she weighs the feel like that. Well. That's, I guess there's something really nice about that, honestly.

Unknown Speaker 30:03
Yeah, yeah.

Scott Benner 30:04
Is there? Um, do you have that thing? Where you're just like sometimes like, oh, not now, like I can't right now? And how do you manage your own health? Like, are you in super amazing shape?

Unknown Speaker 30:19
Always? No. Because I always think No,

Scott Benner 30:23
don't you? Don't you feel like like, the diabetes always makes me feel like I need I should be healthier. I should be around longer, like you start thinking about like, being alive longer, you know, just in case are going to need something. And then you realize, like, you're the person who has like, the least amount of free time in the world. I know. Yeah.

Unknown Speaker 30:44
Yeah, if I, like, you know, took my stress out on a run, that would be amazing, but I don't so.

Unknown Speaker 30:53
Alcohol, you know, it's

Scott Benner 30:56
well, you know, it's funny, I joke, but you can't do that.

Unknown Speaker 30:59
Like, right, right?

Unknown Speaker 31:01
No, yeah, no, I've no, I managed drinkers, though. There's not that, um, it's just a whole lot of being an appreciative for what is going well, and when you have to think about it long term, it makes it easier, I think, Okay. Because, you know, it's not, it's not like a thing, it's fine. I mean, obviously, I like to go to Starbucks, and, you know, just sit for a while, but even then, it's like, I'm just constantly checking numbers, that it's hard to disconnect, especially when I feel so much responsibility. Do you have you know, it's kind of it's hard to turn it off?

Scott Benner 31:40
No, I definitely know that. Do you ever look at your husband or just like, I'm going to leave now. And I'll be back sometime? And goodbye, or?

Unknown Speaker 31:49
Not really? No. I mean, maybe when the kids were younger, but I think every parent has that, you know, when they've just kind of hit their limit, but they're not really anymore. Gotcha.

Scott Benner 32:00
you've settled in into a real acceptance, I guess the word? Yeah, yeah. No, I think so. Yeah. And does that bring clarity to you? does it bring kind of calm and peace? And?

Unknown Speaker 32:16
Yeah, I think it does. Because when you just ask me that, it's like, No, I don't really lose it very often. And you think I would

Scott Benner 32:22
definitely think you, would you, I would think that but twice a day, you'd walk into another, like,

Unknown Speaker 32:30
everyone, you know, it's funny, because once you know, we started with the Down syndrome, and there were some issues at the beginning, and then you just kind of rolled with it. And it's always been, you know, they're a kid first and Down syndrome a second, you know, that your child first and then you just kind of have to deal with this. And so after years of that, you know, then it was just like, the type one was kind of like, Oh, well, why not throw it in there, you know. And so I still feel the same way. I mean, she's still a kid. We're still trying to, you know, keep her diet pretty much the same. We did kind of give up apple juice. That was a big one for her. So after she was diagnosed, it was like, now let's just leave those for Lowe's, you know, um, but I still try to think of her is she's just a kid, you know, I mean, a young adult, if you will, but, you know, and this just kind of comes along with it, I guess.

Unknown Speaker 33:26
Does she see and don't end? Oh,

Unknown Speaker 33:30
no, we're still will because she was diagnosed at 17. We were sent to the Children's Hospital.

Scott Benner 33:36
How long are they gonna let her go there?

Unknown Speaker 33:39
Until she's 21. Okay. And then we will have to switch to an adult, which I feel like by the time she's 21, I think I'll have a really good grasp on it and be okay with that. You know,

Scott Benner 33:50
let's find out where your grasp is right now. So when she was diagnosed, they started off with they give you a pen.

Unknown Speaker 33:57
With insulin they did. Yeah. So we started on pens, and they actually started her on Metformin. Also. She presented very oddly, and they weren't quite sure what to do with her. So we started on injections and Metformin. And then like, at our three month follow up, the endo, which we hadn't seen before. You know, we didn't see him when we were in the hospital, had said, I don't think we really need the Metformin. Let's take that off. And let's just, you know, where they replaced that if she needs more insulin, were they thinking try to I don't know what they were thinking. She just I mean, when, because we obviously like everybody else. We didn't know it was coming. And the only main symptom she had was weight loss. Okay, so she was not nauseous. She wasn't. She never told us that she felt badly. But her diet hadn't changed. I mean, I homeschool, I'm with her all the time. I knew what she was eating. I, you know, and we ended up at a walk in clinic right after Christmas with a pretty serious yeast infection. And they popped her on the scale. And I looked at the number and I thought, well, that can't be right. We had had her at the pediatrician, maybe in August. So sometime between August and December, and she had lost like 15 pounds. And she's not just

Scott Benner 35:31
a big person boyfriend to begin with, right? Yeah.

Unknown Speaker 35:34
Yeah, she's like, four, four. And she's teeny. Yeah, she's teeny. And so I thought, well, that's not normal. Um, and so they gave us the medication for the yeast infection, then, you know, have a follow up with your pediatrician. And so we scheduled that. And I took her in for that. And I said, you know, it was weird. I said, She's lost 15 pounds since August. And the pediatrician was like, yeah, that is kind of weird. Keep an eye on it, you know, put her on the scale. Like, don't be weird about it, but maybe once a week, you know, put her on a scale and see where she's at. And so, of course, I had to Google, you know, like, unexplained weight loss in kids. And the first thing that came up was diabetes, and yeast infection because of all the sugar. And so, I think I waited another week or so. And then I called the pediatrician again and said, I don't think now I don't, I just, it wasn't sitting right with me. I thought there's really no reason for her to lose this weight. And so we went back in, and I said, you know, I'm sorry, but I googled it, and came up with diabetes. And she's like, she doesn't have diabetes. Like, she's got no symptoms, she would be nauseous, she would be vomiting, she would be, you know, all these things. And I said, Well, if you're doing blood work, I said, Would you just run it anyway? Just so we know. I mean, we had type two in the family. And obviously, even when I looked it up online, I didn't. It didn't even occur to me that there were, I mean, I knew there were two types. But I didn't really know the difference. And so I wasn't even scared. At that point. Literally, I was thinking, Oh, if it's diabetes, okay, like, you know, we have grandparents for diabetes, they take medicine, they're fine, you know. And so they did the blood work, we came home. And maybe an hour and a half later, she called me, she was like, how far do you live from the office? And I said, I don't like five minutes, 10 minutes. And she's like, okay, so her numbers came back really high. She's like, if you would I want you to, you know, pack a bag. Because I've called the emergency room, you're going to be waiting for you. But would you swing by the office so we can do a finger prick just to double check that it wasn't a mistake.

Unknown Speaker 37:58
Okay. And, okay. I want to get

Scott Benner 38:01
you moving. But double check right before she sent to the hospital.

Unknown Speaker 38:05
Be sure. I don't think she did. Yeah. And of course, you know, I'm facetiming with my son who's away at school. So he's all up, you know, he's worried. And I'm worried because I'm thinking, are you kidding me? Like a bag? I haven't been in the hospital in years. Like, she's a pretty healthy kid. And I mean, well, so this was Monday morning, and we had tickets, the two of us, Amanda and I to fly to Denver on Saturday morning. So here, I'm worried about the trip, you know, and so we go back into the office, they do a finger poke, and she was like, 447. And she's like, well look at that. And she looked at me, and she said, You diagnosed your child. And I'm really sorry, that, you know, you kind of had to do that. And I you know, and so, off, we went to the, you know, to the hospital, and

Unknown Speaker 39:00
actually a Google did it. And there's no reason you couldn't have googled it. Like,

Unknown Speaker 39:05
I know. When I went in that morning, she's like, you know, I hate to say it, but you know, the only thing in her mind was cancer. Okay, because kids with Yeah, and kids with down syndrome have a higher incidence of getting leukemia, but you're typically diagnosed before you're three. And so I didn't want to go there. You know, I was like, Oh, no, we can't. We can't be dealing with that.

Scott Benner 39:29
Is it possible your your diabetes diagnosis online was hopeful like, you're like it would be better if it was this than what I'm thinking?

Unknown Speaker 39:39
Oh, yeah. Yeah. Because at the time, it never occurred to me that this is what management looked like. Gotcha. With type one. You know, I was blissfully unaware. Yeah,

Scott Benner 39:50
I gotcha. Yeah. You're like a pill. I could do a pill. Are you kidding?

Unknown Speaker 39:54
We do a pill for thyroid. We're good. She can take a pill. That's no problem.

Scott Benner 40:00
doubleback questions. One of them's okay. Because it's bothering me. You're in the, um, the upper Northwest, right? Yes. But are you from there originally?

Unknown Speaker 40:10
No. Well, originally I'm an army brat. So I have I was born overseas, and I've lived lots of places. But my husband and I met in Denver, which is where our families are now. And we have moved up here for for his job. Were you ever

Scott Benner 40:26
in the Wisconsin any Minnesota? area?

Unknown Speaker 40:29
No.

Scott Benner 40:30
Draw out your words. So

Unknown Speaker 40:32
do I sound like that?

Scott Benner 40:33
Well, I couldn't decide if it was if you'd been through Canada or there or but it's Denver. That doesn't make any sense to me. Okay, nevermind. All right, whatever. At least I can stop thinking about it now. Okay. Because you're telling me a really interesting story. And I'm like, where she from?

Unknown Speaker 40:50
Unfortunately, all over. This just must

Scott Benner 40:52
be the blend that you picked up along the way. And then I messed up, I need to go back and ask, um, you said Amanda's four, four, is your son is your son, how's how's your son?

Unknown Speaker 41:05
key? Well, I did not bring any help into the mix. My husband is almost six feet. I'm about five feet. So my son is about a five, nine and a half kind of in between us. And then people with Down syndrome tend to be shorter in stature anyway, and so we joke that, you know, I really didn't help with that

Scott Benner 41:30
at all. So Amanda, she's not a dwarf though.

Unknown Speaker 41:33
Oh, no. Oh. Got it.

Unknown Speaker 41:37
Yeah. And she was born super tiny. Um, so that didn't help either. The pregnancy was not an easy one. And she was two pounds 10 ounces when she was born. So she has always been a little thing.

Scott Benner 41:52
Yeah. Okay, I got it. Okay. I just had to wrap my head around that because when you set our height, I thought that must be a function of the Down syndrome. But I needed to ask anyway, so

Unknown Speaker 42:03
yes, they know Yeah, for sure. I mean, there's not very many tall people with Down syndrome at all, and I i did not contribute

Scott Benner 42:13
drunk drunk the average backwards.

Unknown Speaker 42:15
I did. I did. I know my son looks at

Scott Benner 42:17
me like you were the viewer. The thing standing between me and the height I want to be Vicki's Ron Kelly comes from a long line of tall people. So I am definitely the I'm the the weak link in that in that chain for sure. Yeah. Okay. All right. So at the moment, are you using the needles still? Or have you changed your management style?

Unknown Speaker 42:45
We have changed to an omni pad. We got that last November. So we were on injections for just under a year.

Scott Benner 42:55
Okay. Did she How did she tolerate the injections, by the way?

Unknown Speaker 43:00
No, amazing. I mean, I cannot even explain She is such a rock star. She absolutely rolls with whatever's going on. And at the very beginning, I would joke that there was no way I could lose it, because she wasn't losing it. I mean, she was just like, Okay, this is what we're doing now. Not great, but okay.

Scott Benner 43:20
I was wondering about that. Like, when you said like, if I approached her and I was kind to her, she'd go with it? Is that how she accepts the diabetes to or not that?

Unknown Speaker 43:30
Oh, for sure. Okay. I mean, she's not ever really, I mean, she didn't love that, you know, the biggest issue we had was changing out her Dexcom she did not like having the adhesive pulled away from her skin. But once we figured out, you know, unit solve and letting it sit there, and now it just kind of falls off and she does it herself. You know, we have really zero issues around the management at all with her. And I mean, I'm so grateful for it, because I hear stories, you know, tears and throwing on the floor. And, you know, I don't know if it's just because of her age that she's, you know, a bit more mature or if she literally would have been like that if we were diagnosed 10 years ago. Yeah, I don't know.

Scott Benner 44:16
No, I mean, it chasing a four year old. Around is one thing, but I don't want to be 18 year old around for her.

Unknown Speaker 44:26
I know. They would know. You know?

Unknown Speaker 44:29
I know. Yeah. So no, we're doing the pump. And she seems to be fine with it. I mean, we had when she turned 18 we have to we had to go through a whole guardianship thing and this lady had to come and do an interview and she had to talk to Amanda. And you know, she said I understand you have you know that you have type one diabetes. What does that mean to you? and Amanda just pulled out her. Her Omni pod was on her stomach and she just kind of pulled up her shirt and she was like, right there. That's diabetes. I mean that right there. That's what it is. So what's next? You know, I mean, that's her. That's your understanding right there. For now I have to wear this thing.

Unknown Speaker 45:16
And that's diabetes. Yeah. Well, listen, intro in

Scott Benner 45:21
it to her. That's exactly what it is. So do what, what about her day to day management? Do you see a lot of lows? Do you see spikes? Like, how do you?

Unknown Speaker 45:33
We see hardly any lows. Okay. I mean, ever, even since you've been diagnosed, I mean, like I said, I've listened to all these different podcasts and experiences. And we have a handful of lows. I mean, hardly any. We're still seeing some big rises, even with Pre-Bolus seen and I think, you know, about the time we got the pump was about the time she stopped honeymooning, because we have realized, oh, we're using a lot more insulin than we used to. And so, you know, we still see every you know, every few days, we still hit the 200 before we come back down. And I, I get so frustrated because I just want to master it and do the best I can for her, you know. So I get super frustrated with that. But

Scott Benner 46:28
are you've got nothing but time. So you're like a sci fi movie of somebody who's like on a different planet and can't get home, but you know, has enough food and oxygen. So don't worry, you've got time you'll figure it out your your time. So tell me about it a little bit. So when you say she doesn't get low when she goes 200? Like what's the range you're shooting for?

Unknown Speaker 46:55
We have the alarm set for seven D for a low? Or 75, I guess. And then we kind of treat it 70 if we need to. And then our high we shoot for anything under 140. So

Scott Benner 47:10
you're not going under 7075 very often at all.

Unknown Speaker 47:14
No Good for you. It's weirdly no like she's Yeah,

Scott Benner 47:20
never gets low and a bad spike is 200.

Unknown Speaker 47:24
Yeah.

Scott Benner 47:25
Okay, that's really great. By the way, where's there anyone see come in?

Unknown Speaker 47:29
Well, we ran after diagnosis, we had it at 6.3. And then with the poem, and Christmas and Thanksgiving, we jumped to 7.2 with our last one, but right now we have an appointment next week that will be by phone. And her estimated on our app is 6.4. So when you so we've kind of gotten it back under control.

Scott Benner 47:54
Yeah. What it sounds to me is happens a lot too is when you switch from injections to a pump. A lot of times the doctors sort of like don't have your settings as high as you need them.

Unknown Speaker 48:07
right for your bazel. Probably, she probably had her bazel too low. And yet we've increased bazel we've increased current ratios, we kind of tend to you know, in the hospital there would always say round down, round down will be always round off. You mean,

Unknown Speaker 48:26
yeah, round down?

Unknown Speaker 48:27
No, I'm always like, and another unit, you know,

Unknown Speaker 48:30
yeah,

Unknown Speaker 48:32
it'll be fine.

Scott Benner 48:33
I really do wish people could see me with, you know, with a pump in my hand on the pod is an example where you're pushing that, that arrow up. And, you know, because I didn't, I don't use carbery shit like ratios. Like, I'm not counting carbs than saying, you know, the pump says this much. So I'm rolling the number up, and I stop and push the button and nordeste like, is that how much you were shooting for? I was like, yeah, somewhere around there, it's fine. You know,

Unknown Speaker 49:00
and for me, I kind of do that. I mean, I've gotten to the point where I pretty much know how much insulin it's going to take. But I'm always thinking long term, and somebody's gonna have to take this over at some point. And so I kind of wanted to stay true to at least some sort of ratios so that you can tell if somebody else had to do it. Yeah, it's like, no, the pump is actually right. where, you know, it seems like it never is, but I'm trying to get to the point where it is where when I put in, you know her numbers, that is how much insulin she should

Scott Benner 49:33
get. Well, you know, when you come to a point where you know, this meal is seven units, you can engineer backwards and change your insulin to carb ratio to meet what you know is right. Does that make

Unknown Speaker 49:47
right and that's probably it does. Yeah. And that's probably what I should do. I just math is not strong for me and I want to do it. I just, I feel like I don't have to pass it off yet. I mean, you know, we're good. for at least another 30 years, but yeah,

Scott Benner 50:02
what I'm saying is that the pump says, you know, one unit for every 10 carbs, I don't know what it says, right? And right, it's really one unit for every eight carbs then just change the insulin to carb ratio to match what you see working. Right. That's all I'm saying. So, yeah, that's that that's, you know, I mean, the doctors just guessing when they set up here, and so the carb ratio, so you might as well, data that you actually have that's working.

Unknown Speaker 50:31
Like, Oh, God,

Unknown Speaker 50:33
well, yes. You know, she likes to eat pretty much the same things. I mean, you know, the other morning. Yeah, no, but now that we're all home, you know, it's like, oh, I'll make a nice breakfast. Did you know she ate to brighten your plate? She's like, yeah, tomorrow. Can I just talk what I normally have? Like, she wasn't impressed. Yeah, you know,

Scott Benner 50:52
like, stop with the fancy breakfast, and let's go back

Unknown Speaker 50:54
to exactly. Do what I like,

Scott Benner 50:56
I gotta be honest with you. I like a nice, simple meal. So did you hear online? They're saying the COVID-19 The 19 is for how many pounds? You're going to gain during your

Unknown Speaker 51:07
Oh.

Unknown Speaker 51:10
It's not the freshman 15.

Scott Benner 51:13
Yeah. Oh, wow. Look at you. Now the code. Yeah, it's another strong opportunity for the title of this episode. But, uh, so she likes a nice meal that is that simple. And sort of what she so that's helpful to you, right? Because you, you can kind of figure out good,

Unknown Speaker 51:31
yeah, yeah. Cuz we're after we got out of the hospital. Well, I mean, so we got there. You know, like I said, on the Monday night, and we stayed for two days. And I think on the second day, I said, you know, we've got plane tickets on Saturday morning, are we going to be out of here by Saturday? And they're like, Oh, for sure. You'll be out of here by Saturday. And I'm like, Can we fly on Saturday. And I think probably the best advice I got why we were in the hospital was your daughter is not sick, she just needs insulin. So the quicker you get her back to her normal, the easier it's gonna be on her. You know,

Scott Benner 52:08
it's definitely great advice, especially from a bunch of doctors who are probably high cuz of the weed thing in Denver, and everything.

Unknown Speaker 52:17
Anyway, so it's think we literally, we, the two of us got on the plane that Saturday morning, and we went to Denver, and so, um, even just the district, I mean, I guess I was going towards the, you know, she's even when we were there, I could keep her meals pretty much what she wanted, you know, I mean, besides eating now, and that was I didn't feel any pressure at the beginning to get it right. Because I didn't know you had to get it right. You know, you're not okay. We'll try with this and see how it goes. And your understanding

Scott Benner 52:52
of lows at that point. Like, did you did you? Like that's interesting to me? Did they scare you about being low? Or how did that? How was that in your head at the time?

Unknown Speaker 53:02
It's certainly No, they didn't really scare us about anything. I mean, the feeling I got from the hospital was just overwhelming. I mean, that's how I would describe it, but no fear at all. I mean, it was, it was just just like a discussion if they go high, you know, but it was, you know, if they get to 80 treat with 15 grams, wait 15 minutes, you know, the same rule that everybody seems to get, but there was no fear around it. So I, you know,

Scott Benner 53:32
was there also not any awareness? Did they explain to you what a low blood sugar was? And what

Unknown Speaker 53:38
could have been, to some extent, but no, not to like what could happen?

Scott Benner 53:42
So you have a blissful idea of like, oh, I'll give her too much or too little, the number will go too high or too low, and we'll fix it. And that'll be that.

Unknown Speaker 53:49
And move on. Yeah, I gotcha.

Scott Benner 53:51
No, that's kind of it's what you have to do. I just don't I don't, I'm not a fan of you not understanding exactly. You know, what would happen if she got too low? Going out? Right. When do you When did you realize that? Was it? Like, through online stuff? or?

Unknown Speaker 54:08
Yeah, it was because even the first time she had a low, I honestly was like, what do we really treat it? I mean, will it just kind of go back on its own or should I do something, you know? Yeah. Right. Right. Yeah. I mean, it was so you know, yeah. That's it. Yeah, yeah. But she just heard the Evergreen flow. And I don't know why.

Scott Benner 54:36
It's interesting. It really is. Um, okay. How do you find? I don't want I don't I'm trying to decide what my question is around this long term. What are your are your goals around management? Like, do you feel like there's any ability to teach her any of this or not? Or no,

Unknown Speaker 55:00
At this point, no, there's so much math involved. And, you know, I mean, even if she, okay, so like the other morning, I was super on it, and I Pre-Bolus and I was getting breakfast together, but I got a phone call. And so by the time she was actually eating, she had gone low. And I mean, she holds up her receiver. She's like mom juice. So she does know that when it alarms low, she gets the juice, like she has made that connection. But she was eating. And so I knew I didn't need to give her anything, because the food I mean, you know, give it 510 minutes, the food was gonna hit her and it was going to be fine. So even in that situation, it's so frustrating, because it's not black and white. Yeah. So I mean, I can't even tell her Yes, every time this alarms, you can get me for a juice, you know, unless

Scott Benner 55:57
we've just Pre-Bolus a little too soon. And you're already eating and the foods hitting us and

Unknown Speaker 56:01
you've already had half of your breakfast. Yeah. And then how do you know you've already had 40 of those carbs? And those are working? And I mean, it makes no sense to her at all.

Scott Benner 56:09
Yeah, trust me. In the beginning,

Unknown Speaker 56:12
oh, no, no,

Unknown Speaker 56:13
I know. And so it's super frustrating. So I need like at this point, because she's a senior in high school, we're looking at doing like the public schools have an 18 to 21 program. And it's like a transition program. So they get them kind of like a part time job. That's not paid. I mean, it's just volunteer experience. And they go with the job coach and do all that sort of thing. And so now all of a sudden, we're trying to figure out, well, does she need a nurse with her full time? Because I've been homeschooling? We haven't had to worry about it, I've been able to manage it. Well, you know, the job coach isn't liable for medical things. So they said the most a job coach could do. If it was lunchtime. All they could say is you know, Amanda, it's lunchtime. Don't forget to take your insulin, right? That doesn't sound like Well, that doesn't really work. No, not at all. And so even after she turns 21 when she gets a part time job, what does that support look like? You know,

Scott Benner 57:18
so you have to be thinking about the horizon for Omnipod when it comes out, right?

Unknown Speaker 57:24
Oh, for sure. Yes. And we went with the Omni pod just because like motor wise, I didn't think she could manage the tube. I mean, I'm not she she can go to the bathroom by herself. I'm not regressing on that. You know, I'm not. No, we're not messing with that.

Scott Benner 57:41
Like, listen to me a two makes me have to go back in the bathroom again. It's a it's a non starter.

Unknown Speaker 57:49
Bomb. He we're not doing that. super interesting. Yeah. This thing by the time it was, you know, we were talking about getting a pub. It was like, do I even have to go to the pump class? Because I know if we're doing the pump, I want the only pot No, no, you still have to go and I'll be

Scott Benner 58:07
interested to see how that how an algorithm works for you and for her. Because she's on such similar you know, meals and and my hearing like you can count on her to eat them.

Unknown Speaker 58:22
Oh, wow. She's got a fantastic appetite. Yeah, she eats really well. She's not picky.

Unknown Speaker 58:29
I mean, she's, she's easier to feed than my son.

Scott Benner 58:31
Right. So, um, I'm thinking maybe that, that ends up being really something spectacular for you. Because maybe there is a way to set up like, this is what you know, this is the meal. This is how much insulin, this is what time, maybe you could end up giving her you know, it's funny. I was going to call it freedom, but she doesn't see it as that right. It's not tire. She's not right. Yeah.

Unknown Speaker 58:56
No, it would be for me. I was gonna say

Scott Benner 58:59
yes, I am. So used to thinking of it the other way. And then I as I said, I was like, it was for you not for her. Yeah, although What is your husband's level of understanding of the diabetes stuff? Can he do it as well as you

Unknown Speaker 59:13
know, but he's getting more good. Yeah. Yeah. Yeah. It's just I mean, I'm around it. Literally. 24 seven.

Scott Benner 59:22
Yeah. So yeah, I went out the other day, Arden was busy at home. And we were like, at the end of a pump site, maybe. And I had to go you know, I had to go forage for food. So I was wrapped up and you know, out and her blood sugar was going up. And I you know, it's funny, I was in the store and I didn't take my phone out of my pocket because I just, I don't know, like it was in my head like, don't touch your phone, like don't get involved in touching more things. And you have a lawyer here. And I get out of the car and got myself like, you know, cleansed, and I pulled my phone out. Her blood sugar is going up and I came home. I looked at and I was like, What? What's happening here? I was like, nobody did anything. I was like, it can't be can't always be me. You know, like, I was like daddy was out killing a deer to bring home for.

Unknown Speaker 1:00:13
Right. I

Scott Benner 1:00:15
mean, I was really just in the grocery store, trying not to get you know Coronavirus and buy a pack of chicken breasts, but still, you know exactly what it felt. It's the first time it felt like I was out hunting, that's for sure. Oh, at the grocery store. And, and she's like, I didn't hear it. I was like, What? You had you heard it, right. I didn't. I've been I've been concentrating on my schoolwork and blah, blah. I'm like, my phone's muted. And I was like, okay, all reasonable reasons why she didn't hear it. But like, I don't know, like, it just I had that feeling like, ah, alright. Well, that can't be like that. Like, I have to be able to leave the house. And you have to have an expectation that I won't see my phone maybe once or twice. But you're like, you're just on the hook. You really cardio you really are. I feel I feel for you here. I don't know what the right word is. But you have my whatever it is.

Unknown Speaker 1:01:10
Sympathy,

Scott Benner 1:01:12
sympathy. concern? I don't know. Well, you definitely made a lot of people feel good about their situation today. That's for sure.

Unknown Speaker 1:01:24
I can help one person. I feel like you've helped

Scott Benner 1:01:26
a number of thousands of them. They were just like, Ah, my bad. Dad, okay. Well, listen, you you, I want to kind of finish with this idea. I say all the time, I just got done saying to a buddy of mine the other day. I was like, until your kid has something like this. You don't really know perspective, the way I know perspective. But you know, perspective right? way better than

Unknown Speaker 1:01:54
me. Yeah. Which I felt like I already had it. I mean, come on. Right. You know, like, really? Do I need more?

Scott Benner 1:02:01
But my question is, do you have more? Um,

Unknown Speaker 1:02:11
I don't think so.

Scott Benner 1:02:12
syndrome gave me

Unknown Speaker 1:02:14
all that I needed. Yeah. it prepared me for the type one. How about that? Yeah. No, I mean, we were already on a different path to begin with. You know,

Scott Benner 1:02:28
I was really just wondering, like, is there perspective beyond what people living with diabetes have? And apparently there's a ceiling.

Unknown Speaker 1:02:39
I think mine is just long term. I mean, literally, long term. I mean, for everybody that has those little kids, and they feel horrible about them having to manage it themselves when they get older. You know, I mean, at least Amanda doesn't have that burden. Somebody will have to do it for her. So she's fine with life. Yeah, I think, you know, I mean, really, she doesn't know any different at this point. And she doesn't seem to

Scott Benner 1:03:12
mind that she rolls with it.

Unknown Speaker 1:03:13
Ray. Yeah, she doesn't. I mean, I've never seen her like, Oh, don't you remember mom before this was like this, you know, there's none of that. It's just this is what we're doing now. And, okay, if that's what you're doing, that's what I'm doing. And, and she really does just roll with it. Well, so my point of view,

Scott Benner 1:03:35
God, I'm sorry, your point of view?

Unknown Speaker 1:03:37
Well, I think it's just, you know, like I said, Before, I can't lose it, because she's fine with it. So I have to be fine with it.

Scott Benner 1:03:45
You do anything for your mental health? Do you speak to a therapist? Or? Like, is there something back you shoot a gun out or something like that? Like, what do you do?

Unknown Speaker 1:03:55
I don't, I should probably have one on retainer. No, I mean, literally, I I think it's just my personality. I don't know. I'm like I said, I mean, I've had her for 18 years. So, you know, I can't be in therapy my whole life. Right? You know, I mean,

Scott Benner 1:04:14
you're, you're at your therapist is 110. And you're like, This isn't fair to say that.

Unknown Speaker 1:04:22
We'd be like an old married couple.

Unknown Speaker 1:04:25
Yeah, I guess. So.

Unknown Speaker 1:04:27
You really do you know, it's true. Yeah. So I mean, I have my moments. And I do really well for a while. And then, I mean, with the tungsten room. I never even thought about that anymore. I mean, and it's funny because now I think of the you know, my friends that just have Down syndrome, right? I mean, it's like, well look at them. What are they complaining about? Lucky

Scott Benner 1:04:50
kids. Down syndrome. I bleep that out. But that's what that's how I that's how I see you and your car looking over there like there. They are.

Unknown Speaker 1:05:01
Whatever. So now that is even taken a back burner, you know what I mean? It's like, whatever, it's just Down syndrome, that's fine. But my life now looks totally different. Even then it you know, even than it did before.

Scott Benner 1:05:17
Well, we named a podcast episode together a minute ago, by the way, cuz this one's gonna be called perspective ceiling, just so you know, that's where you go, because that's what I that sounds like, that's exactly what this is you've, you've literally have so much clarity, there's no more left to get. It's, I mean, I guess we should I say that, like, you know, your leg is getting like lopped off in a car accident or something like that you like doesn't matter to me. Like the end of a war movie, where they're like shooting the guy and all this lens, he's like, whatever, my buddies got out, I don't care. You know? My

Unknown Speaker 1:06:02
wish to laugh. I

Unknown Speaker 1:06:05
do. I mean, you either laugh or cry. So, you know, definitely cried, that's for sure. But you can't stay like that forever.

Unknown Speaker 1:06:14
You know, I couldn't imagine I

Scott Benner 1:06:15
mean, that would really ruin you and her and everybody, right? If you just write if you got caught up in it, or if you were unlucky enough to be an anxious or depressed person, by nature, I mean, really, this way, grab you and just shake you

Unknown Speaker 1:06:27
kind of push over the edge? No, you would think

Scott Benner 1:06:29
right? Do you know anybody who's in that situation? Who has their own? Who isn't? You know, uh, you know, a glass half full person to begin with, who then gets the Down syndrome put on top of them? Because, I mean, you see it with diabetes a lot. There's, you know, for every person who comes on here, it's like, oh, I figured out how to use the glucose monitor. And it's made a big difference, Scott, and I'm Pre-Bolus. And there's 10 people out there like, yeah, I'm too anxious to Pre-Bolus and I'm depressed. And you know, like, that kind of stuff is, is more prevalent than I think some of us give credit for. But do you see that in your in that community to where there's some people who are just beaten by this in a way that's hard to put into words?

Unknown Speaker 1:07:09
Another in my circle,

Scott Benner 1:07:11
but I guess that those are people who were reaching out already to make a circle. Get on me,

Unknown Speaker 1:07:16
right? Yeah. Right. And now our kids are 18 2021. And, you know, maybe if I knew them when their kids were born, you know, because we always we all have those birth stories where it's just like a like some people do. Some people didn't. Um, and I guess if you're not one that can handle it, and you have already dealt with that.

Scott Benner 1:07:39
Oh, that didn't occur to me. Did you know before Amanda was born?

Unknown Speaker 1:07:44
We did. Oh, okay.

Scott Benner 1:07:45
Yeah, yeah, you did man. To? To think about it. Yeah.

Unknown Speaker 1:07:49
Yeah. And some people will say, Oh, I wish I did. I wish I did. And I don't know what I would have done, you know, but for us, well, we just wanted to know what the sex was going to be. You know, like, with my son, we didn't have we didn't find out. I was like, oh, our first one are gonna be surprised. You know. And with this, the next one, it was like, you know, I kind of like to know, so I can at least plan a little bit. And, you know, when we first did the ultrasound, they thought it was even worse than Down syndrome again. They thought she had hydrocephalus. Okay. And then they said, Well, maybe hydrocephalus and Down syndrome. And so when the results came back for Down syndrome, it was kind of the same feeling. It was like, Oh, well, if it's just Down syndrome, then that's fine. You

Scott Benner 1:08:32
know, I'm gonna ask your personal we can handle that. And if you don't want to answer it, don't answer it. And if you want me to cut it right out, I absolutely well, but did you consider ending the pregnancy?

Unknown Speaker 1:08:44
No.

Unknown Speaker 1:08:46
No, I mean, our, our ob said, you know, I'm your doctor first. Right? And I'm her doctor second. So you're at that time, but if you want to you have so many weeks to decide, but no, we would have never got you know, is that a um,

Scott Benner 1:09:04
is that a decision based in belief, religion, just being a parent? Like, where did that where what was your perspective on making that decision? Or not even considering it?

Unknown Speaker 1:09:15
I think both. I mean, we are fairly religious. And so that was for sure. A part of it, you know, it was like, Well, if this is our child, and this is our child, you know, and it's already your child. So, I mean, I don't want to judge somebody else if that was their decision, but, you know, to say that, that you know, yeah, I mean, whatever it is, that's your kid, you can't decide what they're going to be like in 20 years. Why decide before they're even born hundred

Unknown Speaker 1:09:47
percent. Just wondering, I was just wondering where I mean, cuz it has to come up like somebody had to say to you, whether it was you or a doctor, or that's what I was thinking is that it didn't, right. We only had one person actually verbally Say, you know, you could just

Unknown Speaker 1:10:02
terminate and move on. Okay. And I was shocked. I mean, member shocked. What's that? Was

Scott Benner 1:10:08
it a family member?

Unknown Speaker 1:10:10
It was. Yeah. And I thought, are you kidding? And I just had to chalk it up to stupidity. mean, you know, like, how dare you?

Scott Benner 1:10:25
I wonder how many people just heard that and thought, oh, Allah, maybe I won't get so upset next time somebody asks me if I gave my kid too much sugar because it's basically the same. Now it's a similar statement, right? It's

Unknown Speaker 1:10:37
exactly, yeah. Well,

Scott Benner 1:10:40
your life has been interesting. And how old are you?

Unknown Speaker 1:10:46
I'm 45. Oh,

Scott Benner 1:10:47
my gosh. You're like, you're 45 and age and like 213 and wisdom and experience.

Unknown Speaker 1:10:57
You should be clarity, people's life questions.

Scott Benner 1:11:02
Do you? I'm gonna let you get out of this in a second. But do you find that other things in life just aren't overwhelming the way you see some? Maybe sometimes people, you know, like on social media are thrown by the simplest thing sometimes. Do you find that those things just bounce off you?

Unknown Speaker 1:11:21
Oh, absolutely. Absolutely. I mean, even, you know, my son played select soccer for years, though, super competitive, super high level. And the parents on the sidelines were just, I mean, you know, they're sports parents. But when you come from a soccer field, where there's kids that can't even work, like mine can, she can run, but there's kids on the team that are using walkers, or needing to be pushed in a wheelchair to participate. You kind of stand on the sidelines and go, Well, you know what, like, they're pretty gifted. And they're really talented, and they're in great shape. And as long as none of them lose a tooth during the game were good, you know? And they'd be like, How can you be so calm? Like, well, what differences this game make? I think I've heard you say, like, even for a baseball game, like, I don't know what the score is, I'm just watching them play. You know, I mean, I would know what the score was, but I didn't care. Yeah. You know, like, they're, and they're amazing. And be grateful that you have a kid that complete this level.

Scott Benner 1:12:31
No, I agree with you. I feel badly sometimes for people when they're so wrapped up in something that I think is, is a is incredibly momentary and isn't going to matter, you know, in a day, let alone a week or a month or a year. And right, and at the same time, I get it like they're, and I'm happy for them. Their lives are not encumbered in a way where they have to think that way or that they're drawn to think that way. But no, I've definitely had people say things to me and in the back of your head, you just think like, you know, if I give my kid too much insulin, something bad happens to her. It's hard for me to get upset about what you're talking about. I just, I feel like I have a different perspective. I don't have yours. Yours is right. Like the Avengers of perspective.

Unknown Speaker 1:13:16
Type One Diabetes just makes it that much more. You know, I mean, it was there to begin with, but no, it's life or death. You know?

Scott Benner 1:13:25
Yeah, I'll tell you something. If it means anything to people with younger kids. I think the way that we've dealt with my son playing baseball is one of the reasons why he's still playing it. Because at no point during this time, have we treated this moment as the most important moment. It's always been now for later, and you know, you're learning something today, you're getting better at something today. And when you take away the immediacy of the need for success, then it can look like a long game didn't mean like you can write and say to yourself, I'm working out on I don't know, a part of my body, or a skill at age 15 that I really don't need until I'm 20. So I have five years to develop it and get it right. Because if I don't succeed, with whatever success looks like, when I'm 17 and a high school baseball game, who cares? I'm really just trying to be ready to play in college. And if you can step back and see the big picture like that. Not only does it make the entire thing more enjoyable, it actually gives you the opportunity to to succeed, because when you start measuring success every Saturday afternoon, that's a that's a full that's a fool's errand, and it knocks most painfully slow, it knocks most people out. At some point, they have a failure, which everyone's going to have and they see it as such a trendsetter. moment for them that they think oh, that's it. I'm not right for this, I can't do it. And they give up instead of just it feeling like a building block. Anyway, genius when it comes to parenting is what I've just got done saying I really understand

Unknown Speaker 1:15:13
as a company, right.

Unknown Speaker 1:15:18
Alright, so

Unknown Speaker 1:15:19
I love it nice. So, you know, my college student is a totally different person than he would have been. Had we not been in this situation.

Scott Benner 1:15:28
Yeah, I believe that I believe that for certain, but what's your son going to college for?

Unknown Speaker 1:15:33
Key physical therapy. Good for him. He enjoys

Unknown Speaker 1:15:37
thinking. He does. Yeah, he likes the athletic part of it, too. Maybe like athletic training. He hasn't decided. But so you know, kinesiology kind of covers a lot of that. So

Scott Benner 1:15:48
listen, as long as he can get a job because you need somebody to leave that house. Listen, you're definitely leaving. Mommy and Daddy love you.

Unknown Speaker 1:15:59
Like there's no way you're living here. Sorry,

Scott Benner 1:16:03
you were getting the hell out of here. We're gonna turn your bedroom into a crying room. Just gonna put a lot of pillows and a futon. And anyway. Well, you are delightful. I really appreciate you wanting to do this and taking the time to do it and getting up so early in the morning. And that your day is like, Can you go back to sleep now? Or you're you're down? You're up, right?

Unknown Speaker 1:16:32
Oh, no.

Scott Benner 1:16:34
You're like sleep? What's that?

Unknown Speaker 1:16:39
Exactly. Oh, my gosh.

Scott Benner 1:16:40
All right. Well, I really appreciate that you found the show and that you reached out and wanted to be a part of it. I know. Thank

Unknown Speaker 1:16:47
you. Thank you.

Unknown Speaker 1:16:49
Yeah, it's been a huge source of information for me. It's been fantastic. I'm really glad.

Scott Benner 1:16:57
Hey, huge thanks to Carrie for coming on the show and sharing her life as the parent of a child with type one diabetes, and Down syndrome.

I'd also like to thank Omni pod for sponsoring this episode of the podcast, please go to my Omni pod.com Ford slash juice box to learn more about my daughter's tubeless insulin pump. And of course dexcom.com Ford slash juice box to get started with that Dexcom g six, continuous glucose monitor. If you're a US veteran, your Dexcom g six is now covered at 100%. Go to my link and check it out right there through the VA hospital dexcom.com. forward slash juice box two big deal. Congratulations to all of you. Do you have a great diabetes practitioner? Or would you like to find out about one, I have a link for you. Juicebox Podcast is proud to present juice box docs.com. It's a great list of doctors that have been suggested by listeners of the show. They send me the doctors, I make the list. That's it, how it works. So if you have a great doc send them over. And if you're looking for one, the list is growing every day, there may just be one near you. I just added some today for Michigan, North Carolina, and Switzerland, I think juicebox docs.com. And if you're looking for those diabetes pro tip episodes, they started Episode 210 here in the podcast, you can always listen to your podcast player. But if you're looking for a quick reference for them, diabetes pro tip.com. It's also a handy little way to share them with others. Two more things, then I'll let you go. Please, if you're listening in a podcast app, and you probably should, because it's really handy. But if you are and you haven't subscribed to the show, please hit subscribe. It helps other people find the show moves me up in, you want to you want to hear the backroom of this. If you subscribe to the show, which doesn't cost you anything, the show gets pushed up in search results. That's it. That's how simple it is. So the next time somebody types in Type One Diabetes into a podcast player, what they get back is the Juicebox Podcast. So if you'd like to show to be found more readily, subscribing is an easy way to help. And it makes actually a really large impact on the search ability of the show. Last thing, data. I don't want to say this. First of all, I should probably say data so the data people don't get all upset at me. But we get to answers more quickly. When we have more data. That's how science works. And that's why I hope you'll consider supporting the T one D exchange and their registry program and it kind of maybe sounds scary like scary like they want your data but they they asked these fairly banal questions about living with type one diabetes. But from those answers, which by the way is completely anonymous and 100%, HIPAA compliant, but from those answers, they derive data, or data, depending on who you are, I guess, or maybe right now you're thinking, no, Scott, it's definitely data. they derive this data that helps drive innovation. In type one diabetes. I don't know what the data is going to do next, I can tell you, it's already made impacts on things that have helped people living with Type One Diabetes, you know, I've talked about them before, but the ADA sets a goal a one C, and doctors go by that goal and data that the T one D exchange, collected and made sense of help the ADA, lower that goal. And that's a healthy thing for people.

Dexcom being covered by Medicaid, Medicare, I think it's Medicare. That came in part from that data, it helped move the process along test trips that are now covered by all kinds of different insurance plans that weren't covered before. That also happened because of this data. And more is coming in more is possible. And the more data they have, the better case they can make. And the better case they can make, the more impact they're going to have on the lives of people living with Type One Diabetes. Now, why am I telling you about this? It's a simple and easy way to support research and the show, it doesn't cost you a dime. You can drop out of it whenever you want, like, say six months from now, like oh should never done that. For reasons I can't imagine why. But let's say you thought that, just tell them That's it, my anonymous data, I don't want you to have it anymore. And they'll purge it and that'll be it. So anyway, if you're still listening, you might actually be interested go to T one d exchange.org. forward slash juicebox. It took me less than 10 minutes to join the registry, you have to be a US citizen who has type one or who is the caregiver or a parent of a person with type one. But that's it. Less than 10 minutes, you'll help move this forward. And you'll help support the show. T one D exchange needs up to 6000 participants. And there are easily more than 6000 people listen to this podcast. So if half of you guys went did it, it would be amazing. If all of you ended it. I'll tell you what, if you guys do that, if somehow 6000 people say you guys go and fill the registry at T one D exchange. I will move the show to three episodes a week instead of two. Because a lot of people ask me to do that. And it's a lot more work and it's a lot more of my time so I can't do it. But if you guys filled the registry, I'd be able to afford to do that. T one d exchange.org. forward slash juicebox. support the show support research. Honestly, you're just doing a great thing that it supports the show as a bonus. See what you think when you get there. I'll talk to you soon.

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#393 After Dark: Bulimia and Depression

ADULT TOPIC WARNING

My anonymous 19 year old guest has bulimia, and depression. She also has type 1 diabetes.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Alexa - Google Play/Android - iHeart Radio -  Radio Public or their favorite podcast app.

+ Click for EPISODE TRANSCRIPT

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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 0:10
Hello friends, and welcome to Episode 393 of the Juicebox Podcast. Today's episode is another in the after dark series which by the way turns one year old this month. First afterdark episode came out in October of 2019 was about drinking with Type One Diabetes. It was followed by smoking weed, trauma and addiction, sex from a female perspective, depression and self harm sex from a male perspective, being a parent in a divorce situation and co parenting, and we talked about bipolar disorder. And in this episode, we're going to tackle billiat and depression with a 19 year old type one who was really kind and open about coming on the show. We do take her name out. So there's gonna be little lapses and audio, where a name was said just out of an abundance of caution for her privacy. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. Please always consult a physician before making any changes to your health care plan, or becoming Bold With Insulin.

This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter. Check it out at Contour Next one.com Ford slash juice box. We're also sponsored today by touched by type one touched by type one.org. Or find them on Facebook or Instagram. Before we get started, I want to remind you that this episode of the podcast is a frank discussion about bulimia, which includes purging. There's also some talk about depression and other sensitive topics.

Anonymous Speaker 1:59
My name is I live in an area and I was diagnosed with diabetes in January of 2018. And I am currently 19 years old.

Scott Benner 2:09
So type one in January of 2019 2018 2018 2019 2020. Like two and a half years.

Anonymous Speaker 2:18
Yeah, just about were you

Scott Benner 2:21
17 yet Are you still 16 when you're diagnosed?

Anonymous Speaker 2:24
I was 17 as

Scott Benner 2:28
a senior in high school.

Anonymous Speaker 2:31
I was a junior in high school

Scott Benner 2:33
the junior. Gotcha. Alright. junior in high school diagnosed in area. Any other diabetes in your family? Or was it a complete surprise?

Anonymous Speaker 2:45
No, it was a complete surprise.

Scott Benner 2:47
Nobody at all. Nothing. How about any weird like? hypothyroidism, celiac? any of that stuff rolling around in the family? Yeah, number nine. I know. You don't go around asking everybody.

Anonymous Speaker 3:00
No, it's not a popular topic during family dinner.

Scott Benner 3:03
Yeah, Jane, I see you in the bathroom a lot after dinner. What could that be? Yeah. What is that celiac 90 chance. Okay, so Okay, so pretty, pretty much an anomaly in your family. What are the first steps your How are you diagnosed?

Anonymous Speaker 3:18
I had a blood test for for my other treatment, which I guess we'll get into soon. And, um, and it showed that my glucose was elevated. So we just did another one. And they told me during finals week that I had to go into the hospital to get checked out. So, um, so there I was diagnosed. Um, and

yeah, so it wasn't,

Scott Benner 3:50
it wasn't. You know, I was getting a blood test for something else that I'm gonna tell you about in a second Scott. And they found that my glucose was elevated.

Anonymous Speaker 3:59
Yeah, I just it was very convenient. You know, it was it wasn't very high. I think it was maybe 8.1. But, yeah, I just, I didn't want to stay overnight. I just had to, you know, come back to the hospital for a few days just to get training. And that was pretty much it.

Scott Benner 4:16
I understand. So if this was like a bad cheesy 80s morning radio show, there'd be like a snoring sound effect right now, while you were telling your story, just.

Anonymous Speaker 4:25
Yeah, it wasn't exciting. I'm sorry. No, no, I

Scott Benner 4:27
mean, I'm happy didn't make something up. I was skiing Scott, Mount Kilimanjaro. I didn't know if you knew you could actually skip that high. But you can and yeah, nothing like that. Okay, so listen, that's great. You didn't go through a lot of the medical issues that you could have gone into you didn't end up in DK. None of that happened, right?

Anonymous Speaker 4:46
No, no. Right.

Scott Benner 4:47
Excellent. Okay, so where are you going to get a blood test for?

Anonymous Speaker 4:52
Okay, so, I was currently in treatment for my eating disorder. I was diagnosed with leukemia, about Few months prior, um, so I was currently in outpatient, and I had to be getting routine blood tests and, and it was my doctor there who discovered it. Okay,

Unknown Speaker 5:16
the babies.

Scott Benner 5:17
So believe me now we're going to talk about something that I don't know anything about. And I want to learn more about At what age do you think it's began? And is that even the right way to talk about it began? Like, how do you see Believe me at first Do you see it as a? Is it a disease? Is it a? Is it a psychological disorder? Is it like how do you talk about it in your life?

Anonymous Speaker 5:42
Okay, so the bulimia, the actual diagnosis didn't actually happen until really a few months before my diabetes diagnosis without getting too soon. But, um, the whole eating disorder began when I was much younger, probably around 14. And, you know, it began as just a thought process and then became something more, you know, first started off with, with restricting, and then later on, it escalated to a full blown eating disorder, and it ended up being glia. So the way I look at it is, yeah, I guess, sorter

Scott Benner 6:22
No, no, it's, so what happens when you're 14 is they're, like, suddenly in a pressure for how you look? Or what yeah, I think starts it.

Anonymous Speaker 6:35
So everyone has a different

way to develop it. Um, lots of times, there's a certain trauma, and this is a coping mechanism. Um, and you know, everyone's trauma is different. So, um, so for me, personally, it was just different life events that was happening at the time, and it felt just, you know, a classic way just to take control, and make myself feel better. So,

you know, I felt that if I was thin, then all

my problems would go away.

Scott Benner 7:06
Let me ask you a question there. A trauma. So I'm not asking for your specifically if you of course, don't want to share it. But could it be anything from like, like a parent getting divorced, or an A, like, like, an assault, like up to like an assault or anything like that last something that takes you out of control? And then the blumea is a way to find control? Is that the idea?

Anonymous Speaker 7:32
Yeah, that's a perfect way to put it. It's any sort of event that no matter how objectively big or small that makes you feel, that you're not in control? And this is something that you could take control of. Gotcha. Okay.

Scott Benner 7:44
Well, I guess that's it. This is gonna sound strange, maybe? Or maybe it won't, but does it work? Does it give you a feeling of control? And does it alleviate the pain coming from the trauma?

Anonymous Speaker 7:56
So at first, um, and at first it does, and, but it quickly spirals, you know, because then soon, the disorder takes over? what you thought you had control, and it becomes controlling you. So. So it might be at first there is this first sense of relief, but it doesn't last?

Scott Benner 8:23
How does it end up taking control of you?

Anonymous Speaker 8:28
Um, it becomes

it takes over every aspect of your life, um, that.

Scott Benner 8:41
Take your time. It's okay. There's no pressure here.

Anonymous Speaker 8:44
Yeah, I just want to find a good way to phrase it.

Well, for me, personally, since I was struggling with a disorder and a type one diabetes diagnosis, it was almost like a cruel joke. How, on one hand, I was in sort of recovery, where I was told not to consciously think about what I ate, and that's constantly thinking about it. Because up until that point, for years, at that point, it was the one thing on my mind, you know, whenever, whenever an event happened, I would my mind would Amelie go to Oh, it's because you're not thin enough. Whenever, you know, I feel like I need control. It was okay, you got to do this habit, you know. But on the other hand, I was a newly diagnosed diabetic and I had to figure out how to you know, at the time I was in carb ratios and figuring out the best time to eat and like how to eat properly with insulin and having eat when I didn't want to because of a low blood sugar or not being a wrinkled, I couldn't eat because of a high blood sugar. So is this really cruel duality of you know, trying to recover from an eating disorder and trying to

Unknown Speaker 9:48
become a good diabetic?

Scott Benner 9:50
Let's make sure I understand. So part of the recovery from the eating disorder is not scheduling and being really specific Think about your food intake and your apps. And so you're going through that process for a number of years. And so you were, you feel like it started around 14. So that means you lived with it for a number of years before it was recognized, and then you start doing work on it. But let me ask you real quickly, how was it recognized? How did you end up in treatment for it?

Anonymous Speaker 10:23
So, okay, so eating disorders are bright hidden, and, and it was doing a good job of hiding it. And it was the summer when I was about 15 or 16. Where I was a lifeguard. And this is where the thinking story is. So don't worry, there is some excitement. But as I was guarding, I think did and the doctor of the camp, I guess, pulled me aside that one Look, I mean, he and he told me you're not eating enough. And that was the first time someone you know, said something face on. And so obviously, I was caught off guard. And

Scott Benner 11:12
so he you fainted, and an adult came up to you and please, I don't know which microphone I'm using to talk right into it. Because sometimes your face is moving away from the microphone, but don't get just be a little cognizant of it. So. So you fainted while you were lifeguarding and adult came up to you and said you need to eat more. Do you feel like that that was based on your physical appearance that he said that he or she said that?

Anonymous Speaker 11:36
Yeah, I believe so. I don't think I look particularly bad. emaciated. I never got to that point. But um, he must have been in the field, you know?

And maybe saw some other signs on Oh, yeah.

Scott Benner 11:57
Well, let's, maybe this is, by the way, so interesting. Because now I'm talking to somebody from my part of the country, and you talk faster than I do. So.

Anonymous Speaker 12:09
I'll try so don't worry. I also

Unknown Speaker 12:10
um, it's, by the way, I'm sorry.

Scott Benner 12:14
And and so why do I have this? Oh, because the thing Nevermind. Um, so, okay, you're talking very quickly, I'm keeping up I'm gonna slow you down a little bit because other people might not be or your pot, your episodes only going to be 45 minutes long, by the way. won't be any the actual like air pauses that everybody got. It's, it's, um, it's nice to talk to somebody from around here. So I can, yeah, I can. We can like hammer through all this. But I want to make sure that we stop and dissect it enough so that it's making sense to people who don't understand. So I think First things first, let's let's define bulimia for a second. So what's the What is it? And how like, how what is it moment to moment, if I have bulimia, what am I doing?

Anonymous Speaker 13:02
So the clinical diagnosis would be

purging I think more than more than three times a week for three months at a time. I'm not sure exactly. But that's the clinical diagnosis. But what that actually is, the life is a horror story. It's every moment um, food and body image is on your mind. And every time you eat, at least for me personally, it was it was like a need to get rid of it. And and a guilt you know, the guilt for being alive because you have to eat to be alive and and every moment just feeling like a weight and having to get nice and neat to get rid of that weight.

Scott Benner 13:43
Okay, so you can you can imagine in your mind that this food is going to go into you and make you fat. And you have to get it out. And on top of that you feel badly for needing to eat to begin with. Hmm, wow. So I looked it up here it says a serious eating disorder marked by bingeing followed by methods to avoid weight gain, believe me is potentially life threatening eating disorder. People with this condition bingi then they take steps to avoid weight gain. Most commonly This means vomiting or purging. But it can also mean excessive exercising or fasting treatments, including counseling medications and nutritional education. So were you just purging Is that how you were handling it?

Anonymous Speaker 14:25
Yeah, so I didn't. Um, I didn't have a textbook pinches. I definitely have overheating issues. But um, but that generally would be the cycle of eating to a point of like, uncomfortableness and then need to purge it. But also, it was just food in general, you know, but definitely overeating is a huge part of it.

Scott Benner 14:48
What's the onus for the overeating is it so that you don't feel well so that it feels like it should come out? Or is it because you know it's coming out so you could just eat whatever you want?

Anonymous Speaker 15:00
more towards the second, it's, um, because every time I would allow myself to eat something that quote unquote, was a bad food, I would think this is the last time you could do this. So I would just eat as much as I can and then yeah, get rid of it.

Scott Benner 15:16
It's that that thing people know, when they, when they're thinking to start a diet, they have that same idea, like, I'm going to start a diet on Monday, so this weekend, or do your food like that, that so that's sort of an idea. Gotcha. Do you during that, did you enjoy eating the food? Um,

Anonymous Speaker 15:47
no, because it's

it doesn't feel like your main, you know, you're you're eating as a compulsion, not for enjoyment.

Scott Benner 16:00
Okay, and, and there's not even a feeling of like, oh, gummy bears. I love gummy bears. It's not even that you don't get that out of anything, either. Not at all. No, it's interesting, because then there's then the connection between the overeating and the eating things that are quote unquote bad for you. Is all psychological. It's nothing to do with the food at all. Really? It's that idea? Wow. Cheese. Okay, that's pretty up. So let's see. Give me a second. I gotta wrap my head. This podcast is taking me in places I didn't expect just so you all know. And I guess because I curse this just became an after dark episode. So congratulations. I made it. Okay. All right. So there's a compulsion to eat. Eating happens, the purging happens? Because I'm interested, how long do we let the food stay in? Before we send it back out? Again?

Anonymous Speaker 16:57
20 minutes is prime. And a guess a depends on at which point recovery I was because, um, you know, it would my mindset would be just make another 10 minute just make it another 10 minutes to not do it. Um, but yeah,

Scott Benner 17:16
20 is about as far as you can make it are there. You know, we always talk about support online for things, thinking about it helping people but is there something like how do you learn how to be bulimic? Do you? Can you go online and find out how to do something that's not good for you, too? I mean, I guess you can, right?

Anonymous Speaker 17:33
Yeah, I didn't, actually, so

Scott Benner 17:37
are you? Are you showing off? Yeah.

Anonymous Speaker 17:43
I'm good, talented. It was, um, it was fine. After I really developed it did I go into all the forums and just like, kind of compare myself to see how, you know how each of us do it ourselves. But, um, I mean, I knew from from media, you know, from all the movies to watch all the books you read, like, what it is and how to do it, but I didn't need to look up tips or step by step manual, you know,

Scott Benner 18:10
but but that exists. So what what I'm wondering is, is when where there are those places online? It's not self loving self loathing completely right. Is there a little bit of like, like, peacocking? Like, I'm really good at this, or is there any of that that goes on?

Anonymous Speaker 18:25
For sure. There is, um, pro Ana, like pro anorexia, there's just pages and pages of, of

people who are hurting possibly supporting each other

of how to be a good anorexic or a good bulimic. And so it's very sick because you because people could find support through that supporting their disorder versus finding a support group or a therapist

Scott Benner 18:57
that keeps you in it and keeps you feeling like, this is great. Like he's doing it too. She's doing it too. There's there's health are they actually talking about like, there are healthy ways to accomplish this?

Anonymous Speaker 19:08
What do you buy healthy? Well, like

Scott Benner 19:09
better way? I don't know. Like, are they really talking about like, Hey, here's the great way to handle this this isn't that do they know it's bad for them and they don't care or they are just some people try to say it's not really detrimental to you like what's the, I guess? What's the scope of the conversation?

Anonymous Speaker 19:26
So it's more just about success. Whether that success is good for you or not, it doesn't matter it just you know, this is how you lose weight. This is how you successfully successfully purge. Um, this is how you exercise suddenly and

Scott Benner 19:42
I understand I just wanted to make sure I was clear, but okay. Is what are the physical problems that come from purging

Unknown Speaker 19:56
In my case, it was diabetes.

Anonymous Speaker 19:59
By It really throws your body out of whack. Um,

Unknown Speaker 20:05
a,

Anonymous Speaker 20:07
you know, there's long term effects you could have tearing in your esophagus from the acid bruising on your knuckles and purging teeth issues, you know, they always say a dentist could tell who's to blame. Um, so the acid

Scott Benner 20:23
hits the teeth, and then your teeth aren't prepared for stomach acid. Not in that. Not in that frequency.

Unknown Speaker 20:31
No, is that and just

Scott Benner 20:34
you said knuckles? I don't I'm not following that one. I'm sorry.

Anonymous Speaker 20:38
I'm just from, like, if you use your hands to purge, then, um, then your teeth would dig into your knuckles and cause scarring.

Scott Benner 20:50
Oh, so I'm reaching down my throat so frequently that I'm hurting my knuckles with my teeth.

Anonymous Speaker 20:55
Yes. And that could also result in stores around the mouth, also from acid reflux.

just general stomach issues, digestion issues.

Scott Benner 21:06
But do you and your doctors believe that? So I'm assuming everyone understands that if you end up having type one diabetes in your life, you've have some sort of genetic markers that predispose you. And the way I find myself thinking about it is that sometimes some sort of a health trauma can kind of speed the process up. And so maybe you were going to get diabetes when you were 10. But instead, you know, I don't know you got the flu really badly when you were five and or a virus or baba or whatever? Do you really believe that? That the impact that believe me had on your system threw you into type one. Don't ignore what kind of meter you're using just a blood glucose meter, it seems really simple, right? Like, it doesn't matter. There's a ton of them, I'll just take the one that doctor gives me except there's differences in accuracy. There's differences in quality of testing. And you can achieve that quality with the Contour Next One blood glucose meter. Go to Contour Next one.com forward slash juice box to learn all about Arden's blood glucose meter. It's got amazing accuracy. At an amazing price. It may even be less expensive. If you bought it with Archer insurance, not crazy, it's something could be cheaper without using your insurance than it is using it could be may not be maybe not sure, check it out Contour Next one.com forward slash juicebox. That's how you'll find out. This meter is small, yet easy to handle has a super bright light, even for a guy like me whose vision is you know, not great at night anymore. It's easy to read, has a great app if you'd like it's Bluetooth connected, and it works well. So well. In fact, that if you touch blood with a test trip and don't get enough, you can actually go back get the rest without impacting the accuracy of the test. And that accuracy is right at the top of industry standards. I love the Contour Next One blood glucose meter, and the numbers it gives back to us because we need those numbers to be something we can trust. Go poke around at Contour Next one.com forward slash juice box, you may even be eligible for an absolutely free meter. And they have an awesome test strip savings program. It's all there at the website. Check it out. If you've gotten yourself a brand new shiny meter that works so much better than the meter you have now you should check out touched by type one.org. I love this type one diabetes organization. They do really incredible work for people living with type one and they do it in very interesting and fun ways. You can learn more at touched by type one.org and go find them on Facebook and Instagram. There's lots to see lots to do. Lots to be excited about. There are links to these sponsors, as well as all the sponsors of the Juicebox Podcast right there in the show notes of your podcast player and at Juicebox podcast.com. I appreciate when you use the links. Alright, we have not even begun to scratch the surface yet in this episode. So let's get back to it.

Do you really believe that the impact that blumea had on your system threw you into type one?

Anonymous Speaker 24:51
Yeah, so that's why I stressed that I started my Blimey I really developed a few months ago for my diagnosis because Cuz as I was going through that, you know, I had the classic type one symptoms, I was very thirsty, I was very lethargic. And I thought it was a direct correlation of the Lamia, you know, because you're getting rid of fluid, so of course, you're going to be thirsty. And, and there's, like you said, there's a genetic factor to diabetes, the marker, and then the environmental factor. And, um, and, you know, I started purging in about like, early December of 2017. And then late January of 2018, I was diagnosed. So it was very hard for me to come to terms with because everyone tells you, you know, it's an autoimmune disorder. It's okay. Like, it wasn't your fault. And at that time, it really did feel like my fault, because it felt like, I chose the eating disorder. And I did this to myself.

Scott Benner 25:54
I see. Well, I mean, obviously, people told you this already. But you, you know, you could have just gotten a virus six months later, and never had the eating disorder and had diabetes. So I hope you found a way not to, to, you know, pressure yourself about that

Anonymous Speaker 26:09
was a therapy. Yeah, yeah.

Scott Benner 26:11
I was gonna say that's how that happens. Right? Do you listen? Have you heard the recent after dark episode about self harm? Yes. Did you find a lot of? I don't know, like parallels between that new?

Anonymous Speaker 26:27
Yes. Can you

Scott Benner 26:29
tell me how?

Anonymous Speaker 26:31
Yeah, um, so

a very common theme that I hear in the episodes is that lots of diabetics find it hard to take care of themselves until they're in a position of taking care of someone else. And, um, and I find that unfortunate, you know, because,

Unknown Speaker 26:55
um,

Anonymous Speaker 26:57
you know, because your will to live, we're really only come from yourself. But that's such a complicated paradox, because you simply don't have a will to live at that point. So how are you supposed to break out that cycle? You know, and when you don't feel like you want to live? Why you take care of your diabetes, you know, it could almost feel like you're punishing yourself, which is, you know, we're like, self harm comes in, you know, feels it was it's another sentence of taking control, you know, it's the opposite of what you think control would be, because you, you're saying, I don't care what the diabetes is telling me to do, I'm going to do what I want. But by doing that, you're just destroying yourself. You're not taking control of your body?

Scott Benner 27:43
Do you have any anxiety issues or depression?

Anonymous Speaker 27:50
Yeah. Oh, so diagnosed around that time, that was huge in everything, because, you know, I'm Dexcom. Right. And, you know, I would spend hours just staring at that graph, you know, trying to figure out the correlations and trying to keep it 100% sense, stable, as much as you try. And you can't always do that. With the depression, um, you know, I would, I wouldn't eat or eat too much, which also goes into the eating disorder, which also throws your blood sugar off whack, and I'm just not feeling the need to take care of myself.

Scott Benner 28:29
Okay. All right. What signs should parents be looking for? in eating disorders that maybe like you said, it's a very hidden thing. But is there a way if you look back, is there a way that someone could have seen you?

Anonymous Speaker 28:48
Yeah, isolation is a huge piece. You know, I've been always afraid, bubbly, extroverted kid. And I want to come out in my room, which is really more signs of depression, but it's specifically with the eating disorder, it would be a classic, I'm not hungry or picking out their food. It's very tough, because with all as much as there's those obvious signs, you know, like, you see someone not eating, but I'm having eat disorder, you get very good at hiding it. So I would only eat in front of people. So to show them that I was okay. maximizing your time around people by always having food with you, making it make it impossible for them to wander, like to think oh, she's not eating ever, because she's always eating when she's around me. Yeah, so I wouldn't say that the signs necessarily really correlate around food, I think would be more around mood because that is where I thought it might have been a little more obvious for people to realize because I simply wasn't myself anymore. So that could be that could be a million things, but you know, to approach someone and say, you know, I see it. I see that something's going on talk to me about it. And you don't have to call them out and say I think I'm disorder, I think your depression or whatever issue you think. But um, but since we feel so isolated and embarrassed, it's so hard to reach out for help

Scott Benner 30:19
you do you have two parents? Are you in a? or? Yeah, they're there. They're

Anonymous Speaker 30:26
married, happily married?

Scott Benner 30:28
And are there any? Has there been any kind of backlash for them? Do they feel badly for not seeing it? Or what's that relationship like now?

Anonymous Speaker 30:41
Right. So my parents have become my number one supporter. In the beginning, it wasn't like that. So, back to when I was 15. And the with when I was lifeguarding, and the, the cam doctor encouraged me to talk to someone about it. And the first person I would reach out would be my parents, the first thing they told me was, you don't look fat enough have eating disorder. So a, and I didn't, and that I didn't get help. You know, it was months after that. I'm trying to get them to realize that something was wrong. And I was able to plan for myself at that point, I had my friend who knew about it, pushing me to go into therapy. So in the beginning,

they were in denial.

Scott Benner 31:32
Was it? Was it just a misunderstanding of what an eating disorder was? Or were they trying to be, you know, denying what was happening? And by the way, how did that feel? Well, hold on answer those questions first, and then I'll,

Anonymous Speaker 31:46
yeah, a huge piece of it was denial for sure. Because again, I was this bubbly, extroverted child, and they looked at me and they think my kids, where did I go wrong? How did How could I have done this to her? And, obviously, you know, there's so many contributing factors. It wasn't bad, you know, but, um, but hurts. I imagined to see your kid go through something like that. Yeah. So for sure. It was nine. Okay. And then another, another, no, just another piece. Also, just not understanding but you start at first, you know, it took it took a good year for them to realize that I was actually struggling with something.

Scott Benner 32:29
Were you and you are being supported during that year by friends.

Anonymous Speaker 32:34
I'm not really know because, um, I had a friend who was definitely a huge support at the time, but there's only so much a friend could do and only so much I could allow myself to to allow my friend to do for me, because this is a this is more than more than us, you know. And, you know, as much as I can feel accepted in my friendship, I'm still killing myself.

Scott Benner 33:05
Okay. Yeah. When you tell your parents and they respond, you don't look thin enough to have an eating disorder. I'm being serious about this, but it's gonna come off as flippant, but it's not. Where you inside thinking. This is amazing. I have been really working hard at being thin and they don't think I look thin. Like did that actually hit you that way?

Anonymous Speaker 33:27
It was horrible. Because I'm

a sick goal of some of the disorder is to look sick enough. And I didn't look sick enough. It seems like in disorder is a very external thing. Um, but it's not. It's not it's internal.

Scott Benner 33:45
For how you looked, it must have I'm putting myself in your shoes for a second and maybe I'm wrong. But it feels like to me like you'd be like, this is what I think this is part of my goal here is to look thin, and you're telling me I don't look thin? Like did that spiral you to hear that? You didn't look the way you expected? You did? Or did you? Could you tell that it was just them? Not wanting their daughter to have bulimia?

Anonymous Speaker 34:09
No, at the time it pushed me just try harder.

Scott Benner 34:13
So I can think that's what I was thinking you were probably like, oh, I'll show you. Yes. Wow, this is uh, yeah, this is messed up. It let's let's we're halfway through so let's give people a little bit of context for where you are now. So you mean you've been in treatment for a while. How What are your goals? Like you know, I I don't know how to think about it. Like I think about when alcoholics talk about you're always an alcoholic. You just haven't drank today, like what's the what's the goal for bulimia.

Unknown Speaker 34:48
So

Anonymous Speaker 34:51
there will always be a piece of it, but it will never be like a once was

Unknown Speaker 34:58
the

Anonymous Speaker 35:01
The goal is to,

as cliche and as it sounds, is to love yourself at any point of your life. Because, you know, our bodies always change. And, and you got to find love from internally. The goal, surprisingly, isn't to never purge again. Because as since this was my coping mechanism for the longest time, it does come up time and time again. But doesn't mean that I, in the DSM five still believe that, you know, because I understand my triggers, and I understand how to not fall into a spiral. So, the goal for it is to not be Hi, I'm Lena, you know, just to be another piece of my story.

Scott Benner 35:51
Do you have new coping mechanisms that you employ?

Anonymous Speaker 35:57
Yeah, so, um,

Unknown Speaker 36:01
um,

Scott Benner 36:03
well, give me this, what's it, what's an example of something that would need you to employ a coping mechanism what could happen in your day to day life that might, that would throw you off tilt.

Unknown Speaker 36:15
So

Anonymous Speaker 36:18
So has a lot to do with my perception of others.

In recovery, I have to learn about this certain partnership about on my end, I have to work on overcoming like, my sensitivities and my triggers, because people say things that they don't even realize that they're saying, and on their end, you know, the people around me should work on being more sensitive, you know, obviously, there's objective things that you shouldn't tell someone, um, like,

for example,

this is an example of something that you would never expect to trigger me, but it did when, when I was 17, I guess, newly diagnosed, I was told that I had to have more carbs in my diet. So I, every morning, I had a yogurt with a quarter cup of granola, which is a lot of granola for the amount of yogurt I was having. And, and I always have it in the morning in school. And one day, my friends, some eating it, and she was like, wow, is that granola, yogurt, or yogurt and granola? implying that that was a lot of granola. And over time, everyone kind of funny. But as he stood up, went out, I threw it out. Because it was, to me that was like, you're saying on eat too much. And objectively, that's that just a comment doesn't mean anything. But for someone with an eating disorder that was destructive. So, um, that scenario happened. Now. my thought process would be, she doesn't mean anything by it. You know, let me just enjoy my yogurt. So that's on my end.

Scott Benner 37:54
It's interesting, because I guess it is all how you react to things. I know. If someone said something like that, to me, my reaction would be, hey, you're a nasty, aren't you? Why don't you shut up? And and like, I would never think like that her opinion meant anything to me. But it it's, it's very meaningful to you. As I'm recording again, so I responded to you. We lost for a second and she's back. But I responded to her statement. And now I realize that she didn't hear it, which is interesting. Yeah.

Unknown Speaker 38:31
Why am I unable now? What was the

Scott Benner 38:34
response? I'm trying to I'm having a technical issue on my make sure I'm recording your voice now. Why is it doing this to me? Okay, I said that it's interesting that you cared what people think because I if somebody said to me, I'd be like, you're a horrible, like, why do you like leave me alone? I like a lot of granola with my yogurt. What's it to you? Why don't you come over here and let me see if I can get this yogurt up your ass. Like I didn't. I would feel like just go away. And die, but it really impacted you. Yeah, does does that always the case.

Unknown Speaker 39:17
So, um,

Anonymous Speaker 39:20
now, um, these situations happen all the time where where people say or do things that to my disordered brain feels like a direct attack while someone else will just go off. But, um, so to me now, um, one time if you feel insecure, instead of rushing to that unhealthy unhealthy coping mechanism or to that unhealthy reaction. I would, um, put in this piece of how am I going to react to this, where it's where I realize that it's not a therapy package. Just people beat people, you know, people talk. And so sometimes, most of the time now I'm successful sometimes I'm not. And I'm,

Scott Benner 40:13
no, I just it's maybe it's got to do with your age or, or your situation. I don't know. And but I and I don't remember myself when I was 16, I guess as well as I think I do. I just know that right now, I can't imagine something, somebody could think of me that I care about. That way, like, don't get me wrong. If people I respect or love have, like constructive criticisms, I'd like to hear them. But I'm just like somebody at school or someone walking down the street. I don't know, like, when I order soft serve ice cream. I'm like, Can you put sprinkles on that? To the point where you're not sure if I got ice cream with sprinkles or sprinkles with ice cream, please? Thank you very much. And I don't care what the person at the place things. I just like my ice cream crunchy. You don't mean? So. But, but but that's it

Anonymous Speaker 41:02
can't really have it. So that's, that's exactly what it is, you know, that I had to find, like self esteem, where the only a pain that mattered were the people that mattered. And now now I think I could say that the average person who would make a dumb comment really isn't does not affect me whatsoever. But, um, and now when someone posts me does make a comment. Um, it doesn't trigger me in the classic sense. You know, um, it just, it's something that I worked through myself,

Scott Benner 41:40
thinking about your diabetes. And believe me, if there were there, there was an overlap, right? So you were diabetic, while you were learning how to manage bulimia. So you were purging while you were using insulin? Is that correct?

Unknown Speaker 42:02
Yes. Okay.

Scott Benner 42:04
How do you do that?

Anonymous Speaker 42:09
It was fun. It was great. Because it a, you see the the physical effects after purging became so obvious because it drops your blood sugar very quickly, soon afterwards. And that I would have to catch it. So it would be, let's say with juice, but maybe didn't work. Or maybe when I go when my culture goes, Well, I become starving so that I will eat again. And then I would purge again. And it would just be there would be nights of just a cycle of binging and purging. I'm

Scott Benner 42:41
going to leave because of the butcher. Let's go step by step. Where you like Pre-Bolus sing meals for you bolusing when you ate like, how are you? Where was that?

Anonymous Speaker 42:53
So it depends what the intention of the meal was. Because sometimes if if it was supposed to be a normal meal was supposed to be dinner, and then yeah, that would be a Pre-Bolus or a normal amount of Bolus. Um, and then it just and then as I ate, um, it depends also what state I was in, it was just a normal meal, then I would just add more insulin. But if it was, okay, this is becoming a purge, I would, um, at that point, I was on MDI, so. And if it wasn't what I was reading on the insulin pump, then I would start like camping the bazel, because I knew what was coming.

Scott Benner 43:31
So some meals, so some meals weren't gonna end up with the purge. No, okay. But it and if it happened, you wouldn't necessarily know before it happened, you don't look at the food and you wouldn't look at the food and say, I'm going to eat this, then I'm going to throw it up. Or it might be your intention was I'm going to, I'm going to keep it. And so at some point, the I'm going to call it a decision, but I guarantee that's not the right word for it, a decision is made that you're going to purge. Now you're cognizant that I'm going to do this, but I have all this insulin going. So I'll drink juice, you didn't think of juice the same way as you thought of food? Or was the idea of keeping yourself alive because of the insulin more powerful than the feeling that you needed to purge?

Anonymous Speaker 44:19
That's exactly what it was, um, where you know, because also, a low blood sugar is a very obvious in your face. Issue, you know, where I was able to face head on, but when doctors or people would tell me, you know, in years from now, you're going to tear your esophagus. You know, that doesn't matter to me in the moment, you know, all I see now is, is I have this Twitter, my body that I have to get out and I would have a whole bunch of girls on my treat that I'm not thinking about. Yeah, but if you just didn't purge, you wouldn't have the cycle.

Scott Benner 44:54
Gotcha. But like if I put you on some train tracks and tied you down and said hey, you have enough time to either Untie yourself or purge that cheeseburger you just ate, you would untie yourself and get off the train tracks. Now, yes. Now you're like, well, now I would. Wow. Okay, what else do I need? What else do I need to understand about bulimia that's untreated? And type one, like, what are people who are living through these two things now? What are they dealing with?

Anonymous Speaker 45:32
So I think it all starts from how the person is educated. Because when calling correctly teaching someone how to be a good diabetic is like teaching them how to have eating disorder. If you don't have a healthy mindset around food, it becomes a chore. I remember when I first started listening to the podcast and hearing how you talk about what's art in about how she could eat whatever she wants. And you know, we'll just Polish correctly, it was Mind blown to me, I never thought that that was possible. I separately correlated my worth to my blood sugar and to the food I was eating. And, and for someone struggling with it is to understand that obviously, your self esteem comes from doing action and taking action. But just to be able to give yourself acceptance that, um, that you're still a good person, even if your blood sugar's a little bit haywire.

Scott Benner 46:34
Do you recognize that? Oh, well, let me start by saying, I recognize that what you're saying is true. Do you recognize that for people who don't have an eating disorder, anxiety or depression that these thoughts are? very infrequently enter their mind? Like, do you know that that's not my life, for instance, that I don't derive self worth from? Like, you know, what you were just talking about? Or I'm like, do you know that you you think differently?

Anonymous Speaker 47:07
Yeah. So it's funny. Um, I would?

At one point, no, because I'm a felt like, this is the normal thought process. It doesn't like, it doesn't matter to me, if someone else's is thinking differently. I mean, I'm

Scott Benner 47:32
not that I, what I was wondering was that, like, like, there, let's maybe blow it up a little bit here, like their artistic minds, and there are maybe more mathematical minds, right. And that, you know, a person who's maybe a tiny bit OCD, who's really good at math goes for a ride on a country road with horses on the side of the road doesn't see the trees doesn't see the horses, just the road in front of them. while I'm driving along, thinking like, it's a lovely landscape. And, you know, like, like, isn't it interesting how the cows seem to cross the water right there and like, like, and the know, and other people don't see that. And it first struck me when, during the self harm episode, when she was talking about these things that were just so true to her. And I realized, like, I've never had that thought in my entire life. Like, I've never considered that once. It's never impacted me at all. And you're, I'm having the same thought talking to you like, there are things that impact you really significantly. And I'm not saying that, you know, you should not let them impact you. I'm not talking like that. I'm saying that there's some way you're wired, that I'm not wired. And you know, and vice versa, too. And let me give you an example of that. I am not a trim lean person, okay. And I've never really been my entire life. And I don't care. Like and so like, I want to be healthy, and I want to live forever. But I don't think of myself, visually, like I don't think oh, I shouldn't do this or wear that. Or people will think that I'm this or that. I don't know that. Like I'm aware that people probably look at me and think I wonder why Scott doesn't knock 20 pounds off. But I don't care. And I'm not. I'm not concerned with it. Like I don't tie him who I am at all to how I look. And trust me, I probably need about 5% of that from you. Like if you could lend it to me that would probably be good for me because it would be better for my health. Just to say five

Anonymous Speaker 49:42
or something.

Scott Benner 49:45
I could send some back to you. I think it would help too. And the one thing I haven't asked you yet that I keep wondering to myself while we're talking like do I get through this without asking this but I really want to add context to it. If you're okay with it. When you You're 14 and this starts. Were you overweight?

Anonymous Speaker 50:04
No. Okay. Can you I was I was

not underweight. But I'm towards

the lower end of a normal weight.

Scott Benner 50:16
Okay. And so even now, how tall are you now? I'm 5656. Would you tell me what you weigh right now?

Anonymous Speaker 50:25
I don't know. But it's part of it. I will weigh yourself, right? Yeah, yeah. No, I don't. But I would. It's a pretty large bracket, but I would say between 140 and 160, maybe.

Scott Benner 50:40
Okay. And are you happy with? Do you even think about how you look now? Like, how do you handle that? Like, are you like, I'm, I look great like this, or I'm comfortable like this? Do you think of it as health? Like, how do you think of your body now.

Anonymous Speaker 50:53
So, um, now I acknowledge that this is not my ideal body type. But I, I am in the process of not equating my work to that, where I'm able to, I'm able to still get dressed and feel good about myself with still knowing that, you know, I'm not, I'm not exactly where I want to be, but I still like myself. And that's okay, you know. So, it's not as debilitating as it once was, you know, there was a time where I really want to go out I wouldn't, I wasn't able to go to school, because I couldn't bear people see my body. And I'm so thankful It's not like that anymore. But, um, that's, that's exactly what I'm a person with eating disorders isn't. doesn't think like, you know, you that you're able to acknowledge, like, you were saying, like, Yeah, I would like to lose a couple pounds, but it's fine. You know, I'm still me. Right. But someone with eating disorder equates it. It's your personality, you know?

Scott Benner 51:56
Gotcha. Do you? Um, can I ask you? Are you in a relationship? No. Okay. Have you? Is that something you want?

Anonymous Speaker 52:06
Um, well, everyone listening me up, but not currently.

Scott Benner 52:12
Like, I don't know if I need a relationship. But you could still, you know, maybe we could hook up for a second I I not looking for you to be involved.

Anonymous Speaker 52:23
Sorry, mom and dad, when you listen to this, but

Scott Benner 52:26
like, I'm not looking for somebody to be involved in my day to day decisions or anything like that, but a little bit, that'd be okay. Is that what you're saying?

Anonymous Speaker 52:36
No, Mom and Dad listen.

Unknown Speaker 52:39
Um,

Anonymous Speaker 52:41
so, I

Okay, so this also really deeply ties into eating disorder. Because when I'm, when my friends were, you know, having relationships, um, I couldn't fear someone looking at me. So, um, and I couldn't, and I knew I was incapable of loving someone else until I love myself. And, um, and now, I'm, I'm really working towards that, you know, like I said earlier, it's a, it's a, it's a partnership, where I have to work on my own self esteem, and my partner will have to be sensitive to that. And I see myself on like, an upward trajectory where I could see myself, you know, being in a healthy relationship, because I have enough self esteem for it. But it's not one of my priorities currently.

Scott Benner 53:41
Cool. Well, I'm glad to hear that you can see it happening is believe me more male or female disorder? Is there not? Is it I'm looking right now? Because I'm interested.

Anonymous Speaker 53:53
That's a good question. I don't know. Let's see what what does it say? What does Google say

Scott Benner 53:57
Lamia affects one to one and a half percent of females nurse attend to one ratio of females to male suffering. Yeah. Because you know, it's funny, I know you're younger, but we're talking about this and us to be on so I'm gonna keep going with my line of thought here. It what I'm picturing is is that like to be intimate with somebody, if your clothes came off, you would back then for certain not be able to handle them looking at you, no matter what your body style was in that moment. Is that right? Correct. Okay, and what I was thinking when you said that was you should try being a boy because it really nobody, I don't really think about anything when that's going on. I'm like, oh, sex, and the rest of it sort of flies out the window. I wonder what it is that um, it just occurred to me that, that maybe there was a weird delineation between this being male to female. And I get that like, I mean, I mean, I don't get it from a female perspective, but I feel like I can understand at least you know, academically what that must be like.

Anonymous Speaker 54:59
Yeah. Just the same thing and the other half a dark episode about sex and diabetes, where I'm about feeling insecure about insulin pump or glucose monitor. And if and just like how some people might feel like that is a flaw, I feel like my body is the flaw. So, yeah. Okay,

Scott Benner 55:18
but at this point today, is it fair to say you don't feel like that? Or you don't feel like that sometimes? Or where are you at right now?

Anonymous Speaker 55:29
Um, I feel better about it. Um, and it's, I acknowledge that's not what it once was. And I acknowledged that I could feel good in the body type that I'm currently in now. But it's still hard. It's still not, you know, because like, currently the stage of recovery that I'm in, I'm medically okay, but I'm still working through the, the mindset of it. And that will take a little more time.

Scott Benner 56:01
You medicated it off for you. I started to ask about depression anxiety earlier, we didn't really go completely into it. Are you taking any medications?

Anonymous Speaker 56:09
Yeah, I'm currently on Prozac.

Scott Benner 56:12
Prozac? Is that helpful?

Anonymous Speaker 56:15
Yeah, so it's just

Unknown Speaker 56:21
a

Anonymous Speaker 56:25
medication doesn't work. Unless you have the motivation to work on yourself all it does, at least the type of medication and I'm on an SSRI just helps give me more energy to deal with my emotions, but it doesn't get rid of the emotions. So um, so it's not it's not. It's not supposed to be long term. I mean, I've been on it for four. I started the journey on medications around two years ago. And I see where I'm where I am right now. I'm budbreak comfortable being on medication. I don't mind it. I do see myself in the future, eventually weighing myself off of it.

Scott Benner 57:08
Have you gone through all of them? Have you tried like Lexapro? stalybridge.

Anonymous Speaker 57:11
Nah, I only I only I tried Zoloft.

Scott Benner 57:16
So your teacher just says I'm a Prozac kind of girl. Yeah. Listen, the idea is to find one that works. Right. So, um, and I really don't mean to push you, but was there a trauma back then that started all this off? Like, can you put your thumb on what happened? Or no? Where do you not want to tell me either any answers fine.

Unknown Speaker 57:41
So

Anonymous Speaker 57:42
this was also a really huge thing for me was that, um, most people have an major external trauma that affects their internal for me, it was really it was all internal it was, it was the way that I perceived the world, and how and how I reacted to it. Like, growing up, you know, I had fantastic family and fantastic parents, but, you know, no person is perfect. And, and, and, from certain actions that may have not been perceived by everyone else as as, as wrong to me, made me feel like, I didn't belong and I wasn't loved. So my mind definitely equated that to my weight. Gotcha. And it was the same with my social life where any kind of have a an issue. You know, I always again, I was always an extroverted kid, I had friends, but but when I lost a friend, it felt like it was directly correlated to my body. So the truth is, there wasn't a major trauma, which is I hope some people would find comfort in that because I have a hard time. It's almost, it's, it's a little bit ridiculous, but I'm almost embarrassed to admit that because thank God, I don't have trauma. But

it kind of feels like why did you have an eating disorder?

Scott Benner 59:16
Does the Um, excuse me for a second? Sorry, does the onset of the bulimia in the 14 did it all correlate with when you began to get your period?

Anonymous Speaker 59:30
No, I was. I don't care too much later. I was. Wait. 15

Scott Benner 59:37
Okay. Just there's there's some disorders that that happen. Sort of when all of the hormones come in? Yeah. Yeah. I wasn't sure if it was a if that was, you know, I wasn't gonna I wasn't looking for like, oh, on the day I got my period. I suddenly I wasn't I didn't mean like that. I just meant like, was it close, but it sounds like it wasn't Okay. This is more important than normal. Is there anything we didn't talk about then? That we should have? Because I really did not know how to ask questions while you were talking. I feel like I didn't okay. But I also feel like,

Anonymous Speaker 1:00:14
Yeah, you did a great job, and I hope I did, too. Um, what was your goal? Yes. Yeah, that's what I was gonna say like, why I wanted to come on. I always heard of Dibley, Mia, you know, like restricting insulin to lose weight. But I never heard of someone like me that struggle with eating disorder prior to the diagnosis that led to it feeling like, everything was my fault, both the eating disorder and both the diabetes, and and I wanted someone maybe out there who may feel the same way to realize that it's okay. And it's and that's not true. And and, you know, everyone has their own story. So, what's your mind?

Scott Benner 1:01:06
Well, I think that well, thank you. First of all, that's excellent. I think that there are obviously a number of things that can go on in a person's life, that sometimes are easier to ignore, then to address. It feels easier. The truth is that doing something's no harder than not doing it, it's actually probably easier to do it than it is to not do it. How convoluted I just made that sound. But you're shooting something constantly anyway, right? You're always doing something, do the thing that will help you. Right, you know, so if you're feeling the way we as described, the first step is what do you think? Is it general practitioner just Hey, I feel depressed, I feel anxious. I haven't either. I think I might have an eating disorder. Like, is it just telling somebody is that the first step?

Anonymous Speaker 1:01:59
I think the first step is to have some sort of support. Um, I know, there's so many horror stories of people who ask medical professionals for help, and they're told the same thing that I was told when my parents that I was, I wasn't sick enough. Um, but the reason why that, even though that did hugely impact my eating disorder, it didn't send me into a spiral. Because, you know, I had a good friend group, you know, um, and I had a friend I could talk to. So, the weather, if, if someone feels like they're, they're able to face that on their own, you know, reaching out to a medical professional. Um, that, of course, would be the first choice. But, and obviously, this is very hard for someone dealing with this because as isolating B, you're very insecure. So you might not feel like you have a support group. But the reality is, you probably do, and there are people who love you, whether it's your family or your friends, so to know that going into whatever treatment you're going into, I think, makes all the difference.

Scott Benner 1:03:03
Okay, thank you. Um, what do you think? The future like short term is for you? Are you in college?

Unknown Speaker 1:03:16
All right, yes.

Scott Benner 1:03:17
Well, nobody's in college right now. But are you in your bedroom getting an education and paying a lot of money for?

Anonymous Speaker 1:03:25
Exactly, um, yeah, I'm actually I want to go into nursing specifically endocrinology. Because it feels like a field that I can make a difference and a field that I relate to. Um Yeah, cuz I want to do the education properly, you know, because like I said earlier, you don't want to treat um, they want you don't want to tell a diabetic how to having disorder.

Scott Benner 1:03:53
So you're so you're in college now your goal is to be a nurse and and hopefully help people with different endocrine issues probably specifically type one. That's lovely. What about your health? Like, how do you like like, I'll give you like, here's an example of my question. I started eating on a What do they call it intermittent fasting kind of schedule recently, which has been really helpful for me so during the pandemic, I lost 11 pounds on purpose right yeah, you're probably the it's weird probably that I'm telling you so but but

Unknown Speaker 1:04:29
by the way, well for you it's great.

Scott Benner 1:04:31
Is this not the most fun conversation about believe me it probably has ever been recorded? Seriously, but But anyway, just went through it intermittent fasting thing, I don't eat before noon, and they don't eat after eight. And in other than that, I'm just eating. I mean, I don't want to say like whatever I want, like I'm conscious to go, you know, not eating like a gallon of ice cream or something like that. But I'm eating pretty normally, in that in that other space. I feel first thought of doing it because of a type two I spoke to who told me how well they were managing their type two diabetes with intermittent fasting, which was really exciting. They were able to cut back on their medications and things like that. And the person told me they had lost weight. I thought, Oh, you know, I'd like to lose weight. Let me try that. And so what? The only thing I tell myself in the beginning, was I just made it very specific, not before noon, not after eat. And to the point where if I got hungry at like, 755, I was like, Well, you've got five minutes to eat something you don't mean like, like, I just, that's what I stayed. And it's, it's, it gave me like some rules that are worth helping me. And I'm wondering, what the rules are you have? Or is it not about that is like, what have you learned in therapy? Is it about just don't restrict yourself? Or is it about healthy rules? Or how do you manage going forward now from here, and where? Where is that you're going? Exactly?

Anonymous Speaker 1:06:07
Yeah, that's a great question. Um, Chad's my therapist, she's the best one we are without her literally. And what I learned with her was, that it's a two piece thing, because there is because even though this is an internal disorder, all the manifestations are external. So there is physical rules that I do have for myself, you know, like, I try to practice intuitive eating, and, and I do what makes me feel comfortable. And, and that also goes in hand with diabetes, because they're, you know, I have to be cognizant, cognizant of the amount of food I'm eating, you know, which is not, you know, you don't tell someone who is someone who's in in treatment and patient, you know, they're not allowed to weigh their food. And I was doing that for the longest time when I was carb counting. So. So now.

Unknown Speaker 1:07:09
Sorry, I lost my train of thought,

Scott Benner 1:07:10
you know, you see, see, you're not allowed to weigh your food because of your treatment. But that's how you were managing your carb counting.

Anonymous Speaker 1:07:16
Yes. So it was a fun duality. But so yes, there is a physical piece. But it's mostly it's mostly internal. Where,

where

Unknown Speaker 1:07:32
I

Anonymous Speaker 1:07:37
had like, hearing you talk about the way that that, you know, you started this intermittent fasting, it was really obvious that you didn't correlate your self worth to your body. And that is my goal. Now, I'm where, back to what I was saying before, how I'm able to look myself and and like, where I'm at, but still acknowledged, I still want to lose the weight. Does that answer your question?

Yeah, it does. I kind of lost my train of thought.

Scott Benner 1:08:08
No, it's it's a long process. And by not, so you're just taking small steps in the right direction, not looking for giant leaps, just continue to do what's best for you. And your physical self should come along as that goes, which is really what I found with this is that I just did what I was supposed to do when without being focused on the physical stuff, the you know, the outwardly physical stuff that just kind of came along for me. So, you know, you just do the right things in the right things happen. Yeah, yeah. No, I hear you that that I, you know, I have to be honest with you. I think that's how I live in general. I don't think that's a bad way to conduct yourself. You know, it's not always about mine mind mind, get more for me, as much as it is, you know, if I do the right thing, sometimes I'm going to benefit from that. Sometimes I won't, but at least I'm always putting the right thing out. And I think that ends up generally speaking, paying you back, so it's a great idea. Good for you. Hmm. Well, congratulations on you know, persevering through telling your parents and then being like, come on, you know, and and that couldn't have been easy. And to stick with it. And now you've got you know, everybody supporting you well, and you're and you're, you're doing the right things that it's, you know, it's really to be applauded, just just doing the right things is, is not always easy.

Anonymous Speaker 1:09:40
Thank you. And I just wanted to put just a final disclaimer out there for anyone listening that struggling with this or something similar, that it's so easy to start comparing yourself but to realize that every experience is different, like I know that I listed a lot of examples, but no one should feel that they're quote unquote, not doing your right or doing a wrong based on my own experience that with any sort of stutter or struggle, you know, everyone has their own experience. So I'm hope no one was triggered.

Scott Benner 1:10:11
So the treatment, the treatment itself is, is going to be wildly different depending on you, depending on the person. Right, huh, that's, it's interesting. You know, we're done. But I'm gonna keep talking for a second, the idea of being triggered is, in my mind, and it is a more to newer idea, like the idea that I might say something or see something or do something or hear something that puts me down a path that of just other people would have known not to say, you know, what, what's the, like, my question to you is, there's a question around that idea of being triggered. How do you hold people accountable for that? Or is that on you? Like, do you mean like, if I'm an idiot, and I look at a person, I'm like, Oh, well, you shouldn't be wearing that shirt. Obviously, I'm an ass. If I say that, but is it? Like, can you really give me that kind of power? like to do you don't mean? Like, it's a weird? Yeah, no, 100%?

Anonymous Speaker 1:11:15
No, no, um, it's, that's, that's exactly it. Where I'm, it doesn't matter what anyone tells me. It matters how I react to it. You know, obviously, it would be nice if people shoot each other well, and don't say dumb things. But if they do, it doesn't, it's irrelevant. what they said. It's really how I reacted like, like how I was saying earlier, people said the most non triggering things that shouldn't be triggered, but worth it didn't matter what they said it was up to me of how I reacted to it.

Scott Benner 1:11:53
So you were like, a live nerve to you were just anything could have made you feel?

Anonymous Speaker 1:11:57
Yeah, worse.

Yeah. Because no one should go go around the lie about their life walking on eggshells, you know, I don't want that was a huge thing with me and my relationships in my life, Where, where, you know, you want people to treat you normal, but they're not your normal if every time they say something, you burst out crying. So, um, so yeah, it's really up to you and how you respond.

Scott Benner 1:12:20
Okay. Yeah, I just I didn't understand cuz I'm old. And, like, you know, I grew up in a time where if somebody said something, and you let it impact you, that was your fault. And at the same time, it is not lost on me that people who you know, profess to, like, I speak the truth, my head, no one's looking for your truth. Just shut up. You don't mean? Like, it's that idea of, like, we all know somebody who runs around just being everybody, and then they like, I'm just telling you how it is. I'm like, no, it's, you know, you're just an angry old, you know, well, I guess I'm thinking of one person in particular. But, um, but you know, that person who believes themselves to be a truth teller really isn't they're just, they're hurting and they're trying to hurt other people. It's fairly obvious, right? You know, unless you're a comedian. By the way, if you're a professional comedian, you're making your money that way, then okay. Making fun is the way to go. But it's just you with four people at a family function. Maybe keep it to yourself, if you don't like my shoes. I guess this one, I'm

Anonymous Speaker 1:13:21
not getting paid to me enough.

Scott Benner 1:13:23
Yeah. Right. If you are then right on, and then I'm paying, like, then then it's then All's fair. You know? Yeah. Okay. This was good. Like, I feel dizzy from this, but it was good. Yeah, so no, it's not you. It's just that, you know, what started out is like a podcast where I'm just like, let me just tell people how we managed my daughter. And then suddenly, you know, one day somebody was like, Can you touch on this topic? And then I started thinking about, like, well, maybe I could expand here, maybe this isn't servicing this person. You know, I've had a lot of conversations and learned about a lot of things that I didn't expect to know about. And it's always been really helpful to me. And it's nice to hear, you know, how you see the world and how the world impacts you. And I think it's great for other people to hear it too. I just didn't expect that it was going to come from my, my diabetes podcast, of all things that I'm starting to feel like the podcast is, you know, has grown somehow in scope. And so I appreciate you. Yes.

Anonymous Speaker 1:14:25
Yeah. So yeah, and thank you for pointing it out. I mean,

Scott Benner 1:14:29
no, that's not what I was doing. But I appreciate that. So are you using the podcast? Like, like, like, have you like been through the pro tips? Like, does it help you day to day, diabetes?

Anonymous Speaker 1:14:40
Yeah, so um, when I began really managing my diabetes, you know, not just trying stay alive, but actually trying to, you know, deal with it. Um, I'm not sure how I stumbled upon the podcast, but um, I think the first episode that I listen to attract mix of the word title. So I wonder where my house is gonna be?

Scott Benner 1:15:05
What was the title? Tell me? Do you remember?

Anonymous Speaker 1:15:08
It was the wheat episode I think, Oh,

Scott Benner 1:15:09
I see are

Anonymous Speaker 1:15:10
you know, again mom and dad is listening.

Scott Benner 1:15:16
Okay, so hold on let's talk around this for half a second and then we'll get back to your thought maybe we're not done. You like the idea of weed? Or you smoking you don't want your parents to know, or I guess there's no way to answer that but like, but the title Got you. So

Anonymous Speaker 1:15:34
it just it would just sound interesting. I don't know, I think I mean, I remember distinctly that being the episode that made me come to listen to the podcast. I'm not sure if it was the first episode I listen to. Um, but um, it just sounded different. You know? Um, no one really spoke about that. So I'm Mom and Dad, I'm sober. Good, I'm fine. Your parents right

Scott Benner 1:15:56
now are listening this and thinking God, I hope she never finds our weed. Yeah.

Unknown Speaker 1:16:04
So

Scott Benner 1:16:06
I didn't mean to put that ahead. I'm sure your parents aren't always. Like, are my parents smoking? I'm not alone. I'm teasing. I'm sure they're not.

Anonymous Speaker 1:16:18
They do go on. They do go on a lot of walks together. So

Scott Benner 1:16:23
I got you probably just in the basement, just walk down stairs, going out, they probably do like a step by step thing at the back door and close the door and then just slide right downstairs. Um,

Anonymous Speaker 1:16:34
but I was just remembering what the original question was. How? Yeah, so once I start listening to the podcast, I just lose your ego. It completely changed my management, the first at first when I started listening, I was listening for like, I guess the other people hearing the stories and every time I would hear you say something radical, I would just think that's so stupid.

Like, like, That's ridiculous. He is

he you know, he's I live with this. But once you put, you know, your ego aside and actually listen to what you're saying. I completely changed my management. And.

Unknown Speaker 1:17:15
And,

Anonymous Speaker 1:17:17
you know, there was probably about a year ago that I started listening to the podcast, and I really feel like I'm a different person now both in recovery, both as a diabetic and just as a Christian as a whole. So,

Scott Benner 1:17:29
Leah, were you hate listening to me at first? You know, I know please, you'd be like the thousandth person to say yes to that. So I

Anonymous Speaker 1:17:43
there were things that I that I like, like I wasn't, I wasn't continuing to listen, just the heat on it. But there were lots of times that I would just get mad and but

Unknown Speaker 1:17:54
yeah, well no to be

Scott Benner 1:17:56
to be serious. And I've heard it now from enough people to put context around it. And I understand it's, it's first of all, you're listening to a person who doesn't have diabetes tell you how to manage insulin, which has got to be strange. Like I I've never really fully immersed myself in that thought, but it's just got to be weird. And, and it can be angering, and especially when I start talking about like, you don't understand, just do this, and it'll work. And you're just like, No, I've been doing this for years, and it doesn't work in your name. Please stop talking. And you know, but there's got to be a little part of you that's like, well, what if it does work? Like I really would like to have that experience, you know? Yeah, okay. Yeah.

Anonymous Speaker 1:18:34
maturity, I'm just putting that passed me, you know, just because you're not someone who has who understands it, and you're giving good advice. So

Scott Benner 1:18:46
Leah, nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan, or becoming bold with insulin because I don't give advice here. I'm just telling people what I do and they can do whatever they want. I hear what you say no, and I appreciate that. Don't get all serious on me. I was half kidding there. But, but no, I really, I'm glad for you because especially your age. You know, you are very it's interesting, you are very mature. I don't know if you like that about yourself or not. But you know, it's it's obvious like talking to you like your your thought process is of, of an age that's I would say greater than 19. And to be able at 19 to hear stuff that doesn't sound like what you're doing that makes you feel like a you know, he doesn't know like Shut up. Like that kind of feeling. And to to to be thoughtful enough to listen anyway. That's really great. Like you're doing a lot of good things for yourself. So good for you. Congratulations. You're welcome. Now I'm it's really, it's impressive. It really is. What do you think the rest of your day is gonna look like? Because I'm going to do laundry and Then I'm gonna put a podcast episode up

Anonymous Speaker 1:20:03
that sounds thrilling. Yeah,

Scott Benner 1:20:05
I'm I'm gonna cook dinner and then afterwards to your parents are off getting loaded somewhere so they're having a great time.

Anonymous Speaker 1:20:12
Yeah, their days definitely better than mine. So no, my days been pretty good so far. So

Scott Benner 1:20:17
now they're on your phone right now looking for dating apps trying to make sure you're not unlike, you know, Tinder or something like that. But But seriously, do you Is there anything you're trying to say to the people listening right now? Give a zip code or anything like that. Anyway, yeah, well out of respect your parents the I don't know what this episode is gonna be called. But it won't be knocking around late just for certain.

Anonymous Speaker 1:20:54
They'll appreciate that. Oh,

Scott Benner 1:20:55
of course. Let me say thank you again and goodbye.

Hey, a huge thanks to Leah for coming on the show and sharing so honestly, and, and being so brave. Thanks also to the Contour Next One blood glucose meter and touched by type one for sponsoring this episode. You can go to touch to buy type one.org or Contour Next one.com. forward slash juice box to learn more. There are also links in your show notes, and at Juicebox podcast.com. To these and all the sponsors. Hey, if you're listening online, could you consider getting that podcast out for me and subscribing? That would be helpful. I would like that. Plus, it's super simple to listen that way and absolutely free. Hope you enjoyed the podcast today. And if you did, and are looking for more of the after dark series, you're looking for Episode 274 about drinking 283 about weed 305 about trauma and addiction 319 sex with Type One Diabetes from a female perspective. Episode 336. about depression and self harm 365 is sex with Type One Diabetes from a male perspective on episode 372, divorce and co parenting Episode 384. Bipolar disorder. If you think you'd be a good person to be on a feature after dark episode, send me a note at Scott at Juicebox podcast.com. Thanks so much for listening. Hey, thanks for the great ratings and reviews that I've gotten recently on Apple podcasts. It's great to see you guys all coming into the private Facebook group. That's been really exciting. There's a link in the show notes to that. I think we're up to about 6500 people in there now. great conversations. And what else? I think that's it. I really appreciate you listening. I'll be back very soon with another episode.

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