Scott Benner 6/16/21 Scott Benner 6/16/21

#493 We Are Diabetes

Asha Brown is an adult type 1 and founder of We Are Diabetes.

We Are Diabetes is a non-profit organization devoted to providing much needed support, education, guidance and hope to individuals living with type 1 diabetes who struggle with disordered eating behaviors.

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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 0:11
Hello friends and welcome to Episode 493 of the Juicebox Podcast On today's episode, Asha Brown is here. Asha is a person who has been living with Type One Diabetes for quite some time. And she's also the creator of we are diabetes. We are diabetes is a nonprofit organization devoted to providing much needed support education, guidance and hope to individuals living with Type One Diabetes to struggle with disordered eating behaviors. Family members and loved ones of those who are struggling are also welcome and encouraged to reach out to the organization. We are diabetes.org. Please remember, while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin.

Before we get started, I'd like to remind you about the T one D exchange. The T one D exchange is looking for type one adults and type one caregivers who are us residents to participate in a quick survey that can be completed in just a few minutes from your phone or your computer. After you finish the questions. They only took me about seven minutes, you're done. This is 100% anonymous, completely HIPAA compliant. And you'll never have to go to a doctor or remote site. And yet, you'll still be helping people with type one diabetes. You can help with research for type one without going to a site or visiting a doctor. And this is how you can do it. T one d exchange.org. forward slash juicebox. Go to the link. Click on join our registering now and then just complete the survey. It's that easy. Pass participants like you have helped to bring increased coverage for test trips, Medicare coverage for CGM, and changes in the ADA guidelines for pediatric a one c goals. And it's exciting to imagine what your participation will lead to while you're on the internet, doing good things, check out touched by type one touch by type one.org. also find them on Facebook and Instagram. Here's Asha.

Asha Brown 2:46
Hi, I'm Asha Brown, the founder and executive director of We Are Diabetes. I also live with Type One Diabetes among other autoimmune diseases.

Scott Benner 2:55
Okay, so I'm gonna say something that you won't take wrong, please. No, I, you are a person who I am aware of peripherally, but I don't think you and I have ever spoken directly. No, this is our first time right now. Right? And at the same time, I have. My wife asked me last night who's on the show who you're recording with tomorrow. I told her. And she said, How come you're having her on and I said, I get a really good vibe from her. Oh, and that's all I had. She's like, that's it. I'm like, Yeah, I get a really good vibe from her. And I said, and she's friendly with people who I also get a good vibe from.

Unknown Speaker 3:32
So

Asha Brown 3:32
you know, I think the good vibe concept and and however you want to, you know, phrase that is what builds very strong communities?

Scott Benner 3:43
I think so I also think that you're from Let me ask you like, when did you start being visible around diabetes? How did that all happen?

Asha Brown 3:51
So that's, that's an interesting question. Because at age five, when I was diagnosed, and then started my professional film career, what a year for my parents. I was actually doing advocacy work with my dad, who's also a type one. And we were featured on the front of Ada diabetes forecast, holiday magazines, blah, blah, blah. But you know, that was back in early 90s. Then I disappeared and had a, you know, an entire unraveling of self. When I came back to life and to the world of social media. And launched we are diabetes. We started in, you know, we began in January 2012. And I still feel like I'm new to technology. But I started connecting with the DRC specifically around that time and ever since then, just like you said, I I really love people. And I like to talk and that is how I've gotten to know everyone that I know.

Scott Benner 4:48
Now it's very cool. So by 2012 I think I'm at this about four or five years by 2012. And I'm just beginning to understand And that other people do what I do. Is that is that, right? Because that's how sort of disjointed the internet was at some point.

Asha Brown 5:08
Yeah, right. Yeah. And that was very everything was starting that I feel like

Scott Benner 5:13
Yeah. Now it just and and the the idea of a diabetes community, it's funny, I think, I don't want to I would never want to speak for anyone. But I think in the beginning, the idea was there were these eight or 10 people. And it was widely believed that they were the core of the diabetes community, right. And I, that they are in my head, right. And I have trouble not thinking of it that way, as well. Like, these are the people who kind of stepped out first. And because I did it, it's interesting. I didn't do it on WordPress. And because I didn't do it on WordPress, I had no SEO. So I was growing word of mouth. But I was not one of the people who anyone was, like, centrally aware of which I ended up believing was really good for, for it in general, because it got to grow at its own pace. But But as the years have gone on, I've come more to think of the community as the people at impacts not the people who are generating content for it. I love that. Okay, that's how I say,

Asha Brown 6:17
and no one has ever said that to me, Scott. But that is exactly how I think of it to simply because of the work I do. Because it is so centralized around my clients and the you know, reach out, you know, the people that come to me and reach out. So diabetes community, and more specifically my community it is it is exactly that it's the people that are part of it, not the people that are spearheading blogging it creating it,

Scott Benner 6:47
the way I think of it is I think it feeds from the out the perimeter to the back into the content creators, like if I make something and nobody cares about it, it'll be obvious to me because I have metrics, and I'll see that nobody cares. Yeah, then I'll just go away. Right? And, but there are people who turn and turn and turn stuff that doesn't get heat or reflected back, or doesn't vibe with people. And that's not the I don't think of that as community. I think I think of the feeling that there are people in the world who were putting out information that hopefully helps you. And if it finds you, and it's valuable for you, then that feeling is the community. I hope that makes sense.

Asha Brown 7:35
No, I love that. And I want to I want to let's piggyback on that. Let's take a piggyback ride. With that being said, what you were just saying about, you get a good feeling from me, that is also part of this, it's an essential part, because who cares how many people visit your website or your website or know about this or that, if it helps you, then it's part of the community. And this concept of inclusivity, although I feel like that word has, it's like the new kale, you know, for for many reasons, important reasons. You know, don't don't get mad at Asha for saying that. But it's but it there's this sense that it has to just, there's no you don't need to grip it, you know, it just it's a good feeling. And it helps you then it's part of it. There doesn't need to be more than that. And there's space for everybody who wants to be part of it. Right?

Scott Benner 8:27
And because it's virtual, I mean, so the word translates community translates. But it's not like, I'm at home and I live in this town and eight of us get together every Thursday and make a potluck dinner and sit down in the room. It does sound fun. Yeah, of course, we're never gonna probably do that again. But I I do understand that. But it's not it's not apples for apples exactly the same thing to me for me, right? It's a woman who said out loud. A Piedra works better for my son than novalogic. And I thought, I'll try that. It's for the first person who said to me, are you going to try a CGM? And I said, I don't know what that is. Yeah, you know, like, right, like, it builds and builds and builds. And then those people have to feed other people. Because no one I used to have this dream, where there'd be a centralized hub where everyone's writing would be. Oh, yeah. And I thought that was the only way to like really serve people and then when you stop and think about it, and then people are, you know, some people are selling ads, and they're making money and it's not gonna it's not gonna work, right. But you know, in a utopian world, that was gonna be the only way for everybody to see everything

Asha Brown 9:45
would be a lot easier and save more time Google searching. Yeah,

Scott Benner 9:47
certainly would and and so at one point, I was like, that's the idea. And I just was like, no, that's not gonna work. And then you know, so you keep going on and on. And now what I've come to believe is that it's it's all about value. So I think this podcast has its its listeners, because one of them hears it, finds it to be valuable and tell someone else about it. That's it, how it works. And if it doesn't work that way for you, then, you know, you keep doing what you're doing, if it makes you happy, but, you know,

Asha Brown 10:20
you know, this actually circles right around to what you first said, is that I know of you. And you have been on my periphery, you know, since I started, I mean, what you do, and just your name has been around for a long time. And I've always gotten a good feeling about you, even though this is the first time we're having, you know, communicate them. Yeah,

Scott Benner 10:42
I appreciate that. Well, listen, at the core of all this. I used to cry in the shower, because I thought I was killing my daughter. And then I figured out how not to do that. And I thought, well, that's something I should tell somebody else. And that's pretty much it. And look at how many people you've helped. That's, I mean, that's just beautiful. Did you come on here to say nice things to me? Because that's not necessary. It's one of my favorite things to do. Oh, please say nice things. To cut you off. I'm terrific. Keep talking. No, no. No, but seriously, it's um, it probably feels trite to hear but it's one of the most fulfilling things I've ever done as an adult, is to watch someone come through and say, hey, guess what? My variability decreased. My time and range increased, my agency went down, I feel better. Or I have one note that sticks in my head forever. Word for word. I used to think my daughter was a bitch. And then we got her blood sugar's lower and stable. And it turns out, she was just tormented by her blood sugar swings

Asha Brown 11:53
at swing suck, especially for girls, just women in general. So hormonal disruption? Oh my gosh,

Scott Benner 11:59
it's like having three. It's like, it's like managing three people's diabetes every 30 days. And yeah, I would agree with that. No One No One yells at you. We're switching to her now. It just happened? Wouldn't it be nice if there was a chart for that? light on your forehead? That would go for amber? bright red, bright red. Right. But no, it's just very, um, I always think back. I don't know that person. Obviously, they just sent a note. But I think what if her whole life with her daughter would have been spent thinking that they had some horrible personality conflict, and they just ended up growing apart because of that, like, that would be just heartbreaking. And why why what helped her no one had a Pre-Bolus understanding how insulin works, you know, II mean, like, that's education

Asha Brown 12:50
can go such a long way. And although it's, you know, it's a different concept. I know for me personally, when my blood sugar's got regulated, after I went to treatment, and something that I experienced with my clients now is, there's a lot of diagnosis, stuff flying around, you know, bipolar depression, and some of and I'm not making light of it. But it's often very difficult to get a firm diagnosis. For a mental state, when your blood sugars have been uncontrolled for a long period of time, you know, and it's pretty amazing how a lot of that softens, when the diabetes control is better.

Scott Benner 13:33
Yeah, well, they're not perfect, but better. There's too many variables. It's hard to know it. So on the podcast, there was a gentleman on a long time ago, he was a barrister from Canada. And he made this fancy Yeah, he's a lawyer in Canada, which I think means I think he just defends like Tim Hortons and stuff like that. But it's not it's um, but he, but he made the point one day that when you're talking to witnesses, he said it like this. He said, some people see a man put a pencil in his pocket and rob a bank and come to the conclusion that pencils caused bank robbery. And, like, right, I'm like, I'm getting what you're saying here. And now when you look, you see people all the time, say, you know, my finger hurts. My hands got to be hurt. Nobody ever thinks there's a something pinched in their shoulder, you know, II mean, or, you know, she's crazy, or she's out of control, or she's just she's a bitch. Like, that's what that woman said. Right? None of that's true. So why don't you tell us a little bit about like your story. You said you unraveled a little bit and came back together. What does that mean?

Asha Brown 14:35
Oh, man. No, it's interesting because I'm, I'm working on a new way to share my story right now. So I'll try to circle back to that in a minute. I yeah, I've lived with chronic illness. My whole life. I was diagnosed with type one and five hashimotos came pretty quickly after that, but it was extremely undramatic just because my dad So live with Type One Diabetes. So what I remember is that, leading up to the diagnosis, I was eating triple Decker peanut butter and banana sandwiches for my bedtime snack, before storytime and then peeing all night long. And so my dad was like, Oh, my God, well, here we go, right. And there you go, at life, you know, with type one as a child was, was still fine for me. And again, I also had this amazing theater and film career that started really quickly after that. And, you know, I've lived a lovely magical childhood. But I am a young woman, and a young woman being in the arts, in this society and culture, who not only has type one and thyroid disease, but was then diagnosed with pcls, which is polycystic ovarian syndrome in high school. Those are a lot of factors playing against you, and the literature and information available in the 90s. about all of these conditions, with crap, just total crap, there was no differentiation between someone living with type one and type two. And it was mostly scare tactic information that I was able to find. So by age 16, I was in a deep rebellion and very angry. I felt like my body was doing me that, you know, no matter what I did, I was going to be fat, not with no legs and probably blind. And, you know, I just, I was deeply angry. So I developed an eating disorder, and many other very terrible coping mechanisms for over a decade.

Scott Benner 16:49
Okay. Are you willing to share them? Or is that enough?

Asha Brown 16:52
Oh, you know, I was. I don't know if we have enough time to go that deep about that. How about that? goes along with what I said before, I think before we started, or maybe we were already recording, I don't know. I've lived many lives. I've lived many lives. And I've met a lot of people. And I've also I have pockets of time that unfortunately, I don't remember things just because of my choices of illegal substances at the time. Gotcha. How about that? How about that

Scott Benner 17:25
I have an episode just went up the other day, where young girl about 27 came on, and for two hours, shared what it was like to get hooked on oxy cotton, and go to heroin, and she's trying to kick it still. And she has type one. Absolutely, like, heartbreaking and fascinating. Really, you know, it was really something

Asha Brown 17:50
I enjoy. You know, it's funny, because I think that people that live with type, I don't know, some, some will agree with me on this is we, our bodies go through so much. And we get kind of used to these irregularities and a lot of strange feelings people don't ever experience on a daily basis, you know, even get alone in their lifetime. But we feel these rises and falls and all sorts of things, just things happening in our body. And I, for me, it gave me the sense of not superiority, but kind of like, you know, well, I can't, I'm going to try really hard not to swear it might be hard. But you know, a few desks and whatever. Like I started to feel invincible. And because my blood sugar's were deeply unmanaged know, my agency was above 15, for almost a decade, I felt nothing. So I started to feel this superior sense of, you know, I can't die. And at this point, I don't care. So that, you know, kind of spurned many poor choices within this timeframe that I'm tired. I

Scott Benner 18:50
understand. So are you saying that after a while of having an elevated blood sugar like that, that not only does everything sort of become physically disconnected, like they say, you can't feel your highs anymore, all that stuff, but you're listening to a doctor who tells you if you don't take really good care of this bad stuffs gonna happen, you know, I got up again today and nothing bad happened because it feels like nothing.

Asha Brown 19:11
Right? Exactly. Like and, you know, again, I also didn't feel pain, which Boy, oh, boy, I wish I had, because now I certainly do. You know, I mean, the complications I live with now, because of that part of my life. I just, you know, I, I, it's, I sober up to it, which I choose to use that word, I sober up to those consequences every day just because of, you know, what my body now has to deal with and what it cannot do anymore, just because of that very long time of uncontrolled blood sugars.

Scott Benner 19:45
How did you have a good attitude about that? Like, how do you not wallow in the look what I did instead of Let's Move forward?

Asha Brown 19:53
I, I wish I had a better answer than the one I'm going to give you because it's not going to help anybody. Okay. It's because I have the a guard genetics. It's from will agar my father, I don't know what's wrong with us. We're deeply plucky, we're deeply plucky, we're, it's half glassful, even if there's barely any water in that glass, I don't. And we have very hardy genetics, like he's been through a lot. My god, he's lived now with type one, much more than 50 years. He was diagnosed in 1970. He's, he's had a quintuple bypass surgery. He recently had two heart surgeries in September. You know, just if it happens. No, but he's, he's still working, thriving. He's, he lives this beautiful life of art. And he's a teacher and a father, a musician. He just, he wants to choose joy versus not. And that is, it's been ingrained in me. I was taught it, you know, before I even understood words.

Scott Benner 20:59
It's very, very interesting that you're talking about this right now. Because two hours ago, I was standing in my kitchen, my wife and I were talking about an acquaintance who seemed to be falling down rabbit holes. And I said, I wonder what the difference is between someone who sees something and says, Oh, this is horrible, and burrows down on the horrible. And someone who says, Oh, this isn't great. But here's perspective. Like we were talking specifically about being kind of locked in your house right now. And I said, um, I said, I try to step back and think, well, I am quarantined here, but my life is still better than most people's. And then I just reset my idea of what great is and keep moving. I don't know. And I don't understand why other people can't do that. I get that they can't. And I'm not saying I don't understand, like, Hey, you should just do it. Right. Like I frankly, can't, I can't comprehend it. And I know, it's just the difference in whatever you said. Right. Like the unknown part of who people are.

Asha Brown 22:01
I think that's like the I think it's the evasive component to why some people have treatment resistant depression, you know, I think it's the that like, I think, is the phrase jenis acquah. We don't know, scientists are still trying to figure it out. Everybody's Ted talking about it. We're never going to know, because it's the magic of life. It just is, you know,

Scott Benner 22:23
it doesn't for others. And that's that. Yeah, I saw I used this as an example. When I was talking my wife, I said, when I was very young in elementary school, I remember kids talking about, you know, all the things kids talk about. And the one thing that came up was, if you step on a crack in the sidewalk, you'll break your mother's back, right? Like, it's like this thing. So I remember one day walking to school on this long sidewalk. And I noticed, oh my gosh, I'm purposely not stepping on the cracks in the sidewalk. And my mind immediately said, That's crazy. Just step on the cracks in the sidewalk. So I see, every crack I could on the way to school. got home, mom was fine. That was the end of it. Yeah. That's what you learned your lesson. How does someone have that very first, like, seed of a thought around something obsessive like that, and then not be able to, like leave it go or walk away from it. It's terrible.

Asha Brown 23:19
You know, it's terrible. And that's a great, you know, that's, that's a question that I wish I had the answer to. And yet, it's kind of what gives me drive every day with the work I do. Now, because I've been there, I had my own inability to step on the cracks, so to speak, right? With my behaviors and the coping mechanisms I use to avoid my feelings and avoid growing up and being an adult. And I'm very, I'm making very light you know, of what I struggled with. And the people that I work with in my coaching and just people that reach out to weird diabetes. Everyone is at a place where they recognize I don't want to do this anymore, but but it's gotten so cyclical and so difficult, and and they can see it but they don't know how to pull themselves out. And it is, it is a different process for every single person.

Scott Benner 24:14
I think it's very common through many threads of being human to like seeing that you're trapped, knowing it's not what you want and not knowing the steps and by the way, I don't see that as being much different than being diagnosed with Type One Diabetes being told test your blood sugar counts your carbs, getting getting mired down in this to too vague plan, then starting to see the bigger impact pop, you know, packs and think I don't know how to do that only have these couple of tools. It's like somebody hands you like a hammer and a screwdriver. And it's like, okay, go make a space shuttle.

Asha Brown 24:48
Right, right. I know. Oh, that's a great metaphor. I don't think I can write that down. Oh my gosh.

Scott Benner 24:56
It really does feel like that's what diabetes is like, for most people who get That direction, and then it takes certain people to break free of it. And certain people can't. And then hopefully those that could This is how I see it at least those that could. Should I used to talk about like being on a dark path. Like I always tell people like I'm not better at diabetes than you are. I'm just farther ahead in the idea of in you are. So what's wrong with me shining a light back at you and going, Hey, I'm up here. You know, there's a hole there stick there. There's a lion, if you go this way, that way, this way, that way, you can come home be with me, you don't have to take the trip I took,

Asha Brown 25:34
you know, right, right. Another way to think about it. And what I'm hearing from you is, especially for newly diagnosed, you think there is just this one path. And apparently, if it's not working, then you're the failure, right? But what people don't know is there's so many paths to the same great outcome. And you can even make your own like, you can literally just carve your own way you can use a CGM, but not a pump. And, you know, this is I mean, it's like, there's so many different options. But it's almost like if someone isn't told you can do that you can choose this or not. They don't even think that's a possibility.

Scott Benner 26:11
I have to tell you that there are days where I think my whole job is just on the pad on the ass guy. I'm the guy going you can do it. Get out there. Right? Like, it'll be fine. Try another unit. See what happens. You know, like I love. I love that moment where somebody says, I don't understand my blood sugar's been 250 for three weeks, and I can't do anything about it. I'm like, now that isn't right. The statement, the statement that I can't do anything about it isn't right. Like you can give yourself your blood sugar will be lower. Right. Right. Right. You know, and you're afraid for probably very good reasons. Here are the steps I would take to get it to.

Asha Brown 26:46
Yeah, no, I can't say that. Yeah. Lower say, No. All I can do is redirect, redirect, encourage.

Scott Benner 26:53
Yeah. And I'm and listen, here's the great thing about the podcast, I'm obviously not a doctor, either, right? All I do is I kind of come on here. And I talk about how I do things for my daughter, how I see my daughter doing things people can take from it, what they will leave behind what they don't want. But we really do get caught in that. That sort of like gray area of there are people who know and won't say,

Asha Brown 27:17
Yeah, what is up with that? I kind of get it. But I here's the other mean. So along, as long as I'm continuing to be mindful about what I can say and not say and what you know, will lead to supportive and non illegal like, or not, like no legal battles in my future. What we do is also so important, because it is that much needed, like middle space. Right? You there needs to be people that talk about their personal experience, or their you know, what's working for their family. And isn't. Because if there was just endocrinologist, and CB appointments, then our whole community, you know, back to the community thing, we would be so lost. You know, it's my need these people talking about what works for them.

Scott Benner 28:16
My daughter's endocrinology appointments got us to a low eight, a one se and a lot of stress and anxiety. And I'm sure my little baby not feeling very. And so then I'm like, All right, let me try to figure this out for myself. I didn't realize until years later after writing the blog for a while. So I always have this sort of I have a I usually I'm sure this is politically incorrect. But I have like a little fat kids mentality. I don't think I'm good at anything specifically. You know, I always imagine if anyone can do something, if I can do something, it must mean everyone can do it. Like I don't have a ton.

Asha Brown 28:53
I actually totally understand that. Yeah, I

Scott Benner 28:55
get it. So at one point, I hear people kind of ranting and raving like you can't like they used to say like, you can't give people medical advice. They weren't talking to me. They're saying it out loud, right? You can't write advice. I'm like, but nobody's giving them the advice. So and then. And then the argument would be well, you Well, it's not safe. And I'm like, Alright, well, can't there be a way to tell this story safely? So that right so that you can't hurt yourself? Like, you know, by under understanding slowly, that's where the podcast came in, because writing it down was nice. But saying it works. So much better.

Asha Brown 29:31
Words there, you know, the spoken word as well. I mean, I'm an actor, so I could go on, but it's, you know, what you offer to people is so much more than reading it on a piece of in a book or a blog because it shows you are real. You're a real person going through this and they can hear a motion and variability in your voice and know that it's true.

Scott Benner 29:53
It's very important to be able to hear those so you can't misinterpret an idea to be spoken assist. is so much more important. So anyway, now at this point, I mean, by the time your episode comes out, the podcast will have 3 million downloads. And it just had 2 million not long ago. Oh my gosh, that's just nuts. And then the, the, the, the feedback that continues to come back is, is similar. And it grows in mass, which just I think proves to me it's working for people because totally woke so it's, it's very thrilling and and

Asha Brown 30:30
what actually makes sense that with with the life that we all must consider living moving forward, how's that for a politically correct way to say, we, this, you may find even more listeners tuning in, you know, people like reaching for, you know, options for entertainment that is inside their home, you know, that's engaging, they will explore and find, you know, this podcast that perhaps that they wouldn't

Scott Benner 30:59
want, I'm think you're gonna see too with more sedentary lifestyles, which are happening at the moment, people's insulin needs go up, and they don't see the correlation between being sent and their insulin needs. But anyway, so it's very uncommon for me, because you have, like you said, you do we are diabetes is a coaching site. Is that right?

Asha Brown 31:19
Well, it's no, I mean, that's like the pretty much the last part of it we are diabetes is actually a 501, c three nonprofit. And we are primarily supported to spreading awareness, education and support to people living with Type One Diabetes and disordered eating. And that kind of also includes their families or loved ones, as well as clinics and the providers that are working with these with these individuals. Okay,

Scott Benner 31:43
so if I had Is it me, is it mainly around disordered eating that you

Asha Brown 31:47
right now it is primarily is the primary focus. And what I always like to say is, once I see a large change, which I do believe is possible, not with this president, but perhaps the future one, as well as many other things in the medical world that will shift? Once I see that change? Then I have, I've got decades and decades of ideas of what wad can then move into. But right now we are, this is our primary focus.

Scott Benner 32:13
Am I mean, am I anywhere near your thinking? When I say that, I tell my daughter, and anybody who's willing to listen to the show, that I think limiting food because of diabetes is a gateway to an eating disorder?

Asha Brown 32:28
Yes, you are absolutely correct. And if you want to make banners, and you know, just like little Instagram posters with that message, I am fully behind you because you are correct.

Scott Benner 32:40
So I don't personally care how people eat. I just want them to be able to use insulin in the scenario they find themselves in. That's my goal for that I want you to be able to look at whatever it is you look at in the refrigerator. And say, I know how to Bolus for that. And I think that some people take that as meaning like I want everybody eat like very sugary, high carb things. I don't feel like that. I think if you want cake, you should have cake. I think I think that if you want to eat like today, in a couple of hours, I have an episode going up with an with a doctor who is firmly behind a carnivore diet. And I and I did not put that up because I was like, Oh, I want everybody to eat carnivore. I don't want everybody to understand, this is a different way some people eat. And yeah, if you want to do this, too, here's what it is. And you know what I mean? And then go figure out how to use insulin for it. I don't, I'm not into telling people what to do.

Asha Brown 33:36
No, I think along with that thought, for me, especially because of you know, the past few years with my health and understanding hormones and how deeply important and integral they are to functionality. Insulin is a hormone. So when you have to provide it synthetically, it does take more work and education, and a deep sense of understanding of how your body works with a bunch of variable factors, you know, so their food is, is like, Oh, this is a terrible metaphor, but it kind of goes food is the icing on the cake of the issue. It's really not the issue. It's understanding how insulin works with your body, your set of hormones and all the factors that change.

Scott Benner 34:22
And and it's one thing that gets lost so often and all this is is the idea that 10 carbs of one thing is not commensurate to tank carbs and another thing and it's just not at all and I'm at different times of day, it's a different ballgame. Yeah, I would tell you that I'm sure that if my daughter decided to eat, you know, a keto diet or an all meat diet or something like that, I'd have a easier time and she'd have an easier time managing her insulin. But you know, for context, Arden has what I would think is a fairly classic American diet or a one sees between five, two and six to four, six and a half years. So it's doable or variabilities good. Oh At that age, that's so good for her moving forward, it's listening. My point ends up being that I kept thinking back a long time ago, there's got to be a distilled way to think about the bigger tools, where then people can take them and apply them to their lives so they can take the hammer and the screwdriver that they were given and instead of being facia, but instead of beating in a nail with a hammer, they go, Well, if I flip this thing upside down and use the handle like this, you know, they can take the tools and do what they want with them. Right. That's it. I honestly think that managing insulin for most people, and there are a number of people who have extenuating medical circumstances, and I'm not putting them into the same boat. Yeah, but for most people, it's about having your basil, right, understanding the timing of meal insulin, understanding the impact of different carbs. And you know, from there more and more things, but you could start with those three things and have a successful life,

Asha Brown 35:59
I think. And then I think to add on to that, at least with my, you know, that was my community that I serve is being honest with yourself.

Scott Benner 36:13
What are ways people aren't honest with themselves,

Asha Brown 36:16
you know, that. So that goes into deep, many layers. So, honesty, about, you know, for people who have, you know, gravitate towards binge eating disorder, which, you know, I don't even, I want to avoid saying anything that is going to come back at me negatively. It's, it can be a common thing for people living with type one, to struggle with binge eating disorder, sometimes, right, and I'm not a doctor, there you go. But so being honest with how much food you're eating, being honest with your relationship with food, being honest about you know, how often, you know, you are reaching for food, instead of sharing your feelings. And you know, so it goes into a lot of different layers of honesty. And, you know, you're, you're even playing around with your ability to be honest with yourself.

Scott Benner 37:09
So there are people who are from a third party perspective, quite clearly making decisions that are impacting them. And then when you ask them what's going on, they're like, I don't know, I eat fine, right? Yeah, like that thing.

Asha Brown 37:24
Right? Yep. Yep. And, I mean, so and there's layers of that too, because I for years, was, so in denial that what I was doing, and the choices I were making was actually, you know, under the umbrella of an eating disorder, you know, I would never have used that word ever. And, and yet, I was so secretive and making don't and creating so many lies to protect my behaviors, and my choices and decisions. And my life had become very small in regards to food and what I could tolerate or trust it, you know, it was this big, big ball of, you know, those balls of rubber bands that people have in the office, you know, oh, it was a huge rubber ball of live bands, you know, big, big band of lies. So,

Scott Benner 38:15
yeah, your question cuz I'm looking at you, and I, oh, I've seen you over time. You're, I mean, listen, unless you change drastically below your navel. You're a trim lean person. Are you telling me that you were obese at some point?

Asha Brown 38:31
I was. I don't know, if I was obese. I certainly was heavier at different times in my life. Okay. I was I, my natural body size is what you see. And, you know, I've always been petite. I guess that's the word you use. what's ironic is that when my eating disorder began, you know, I did initially lose weight and I will not talk about any more specifics as to how that happened. But it happened. And what is also interesting is as I layered on more eating disorder, paid behaviors, and as I omitted more insulin, which meant I was constantly hungry and thirsty and craving carbs all the time, my body swole up. So I did gain a great deal of edema and just wait, you know, from years of bingeing and many other disordered behaviors,

Scott Benner 39:31
okay. I always struggle with like, I have people on who have who've suffered like with diabelli Mia, I've had just Billy Billy mix on who there was one girl on recently, she was terrific because she had it's weird how I think of like good stories. Fantastic. Way before she had diabetes, but it just made her story different, you know? And, and I, I always like I always get right up to the line, I want people to understand how insulin is reverse manipulated to keep weight down without without giving someone a step by step tutorial about how to have an eating disorder.

Asha Brown 40:16
Right. And it's so difficult because I see very well meaning people offering advice which there is a line crossed too many times about this. But, you know, Insulin is a hormone. If your hormones are imbalanced, things don't work out. I mean, that's the essence. So if you're getting too much insulin at certain times, and you're being forced to eat too much, that's not going to end well, long term, and you're not going to feel good. If you're not getting enough insulin, you know, things get imbalanced, that's not going to end well. You're not going to feel or look good. You know, it's like,

Scott Benner 40:52
I went up when I'm trying to explain to people when they're what I really do think everything starts at Basal. So when people when people have these little like graphs that go along, then they dip down, they come back up, my first question is, it's funny to watch people jump to conclusions, because I have a very robust Facebook page around the the podcasters. Like 7000 people in it right now. Like 6500 of them are active on a daily basis. Wow, nicest place I've ever seen on Facebook, people are not talking to each other at all. But it's interesting, I want to go live there. It is lovely, actually. But when you see stability, that's a small drop and comes back up again. still barely small drop comes back up again. Some people say, Oh, your basil is too high, it's dropping you down. But I always think to ask first, Hey, are you is that? are you feeding that low to stop it? Or are you bolusing? Right to like, like, are these spikes that that need insulin or these drops that need food? And then I very frequently use the phrase feeding insulin, because I find it intersects with people like that understanding that they're using too much insulin when you're using too much insulin. You have to feed it. Yep. health wise tonight. Yeah, bad for you. Right. But But management wise and figuring it out. If you find yourself feeding your insulin, you probably have a little too much somewhere. Right?

Asha Brown 42:16
I know. It's interesting, because I switched over to the Omni pod, actually, for the first pump of my life this year, you know, with quarantine and everything. I was like I finally I should probably finally try it right. And it was actually a wonderful experience because I was able to utilize integrate the integrated diabetes services. Daniel Hargan rater helped me, you know, yay for community, right. But it really did. Right to what you're saying about the basil being kind of a core. important factor. The major factor is I totally agree. And it's been fascinating to, to work on my specific basil needs, just because I also take steroids multiple times a day to stay alive with my Addison's disease. So it's been very interesting. Yeah,

Scott Benner 43:02
no kidding. I think I'm sniffing out as I pay attention, I speak to more and more people that some older diabetics, people who have had diabetes for a longer time going back to older insulins, who are on MDI, sometimes use more basil than they need, in the same way as they used to shoot their regular and right and then eat at a certain time. It's almost like I'll put the easel in and as it draws me down, I'll have a meal. And it's a timing thing works really well for them. If they have that regulated life, wants a choice, right. But I think at some point, it's interesting to watch people leave a heavy basil, the MDI program, and go to arm and go to a pump, because then they're like, I don't understand my blood sugar's 200. All the time. It's like, Hey, you don't realize you had way too much basil going before? Right? And so you weren't, you weren't bolusing or injecting as much at meals as you probably needed to. Because you had such a heavy layer of basil. And I'm fascinated by how insulin works and, and how

Asha Brown 44:07
it is. It is fascinating. And I think it's a good word to use, because I had to really go through this process of not believing it was the devil and that it was going to make me fat. But then I also had to totally embrace re educating myself and being curious about it instead of afraid of it. And I think there's this big fear thing. And you know, it's not helping, there's a lot of journalists out there and there's really bombastic titled articles about insulin resistance, and, you know, and, and so it just creates this fear. But if you're curious, and you're willing to just see what works. Life can be so much better. Yeah,

Scott Benner 44:48
no, I mean, the whole kind of rallying cry around the podcast is to be bold with insulin. Yeah, just yeah, just use it the way you need it. What and I I'm, I'm fasting It is endlessly and I am some point going to get an adult on here who can who has diabetes who can talk about it about that idea that there's a certain amount of insulin that if I use over that I'm failing somehow.

Asha Brown 45:12
Oh, well, my goodness, well, maybe you should just have me come back on. And we'll talk specifically about that, Scott, because that's one of the conversations I have, almost daily with a client. I mean, that's a, that's a big, that's a big fear thing in regards to people who have disordered eating and thinking about diabetes.

Scott Benner 45:28
It's interesting how that those layers kind of pile on top of each other the idea that like, well, I, it's the insulins fault. I'm like, Well, no, it's carbs. And it's the carbs really, you're eating out so many carbs, you need this much insulin, right? So your problems, not the insulin, your problem is your intake. And if it's a problem, by the way, it's not a problem. You know, like when people say they get, you know, I'm so scared of insulin, because it's gonna make me fat. I think that it's such a simple thing that happens, that then gets blown up in people's minds and just spoken about incorrectly, like, you get diagnosed, oftentimes, you lose weight, and you start having insulin, your body starts processing food correctly. And then while the weight comes back on, now, if you're a person who's eating more calories, or more carbs in a day than your body needs, you are going to see weight gain from that correct. But that's not the insulin, just not the same way.

Asha Brown 46:24
It's Ultimately though, that that specific situation that you described is, isn't is very commonly a time when disordered eating and thinking patterns can occur for someone, just because they do see that big switch, you know, they're saying I didn't have enough insulin, but now they're putting insulin in me, they are right all this like, now insulin is, you know, insulin is to blame and insulin to the pencil that the

Scott Benner 46:51
guy put in his pocket before he robbed the bank. You know, what's wrong here? It's this. It's, um, it's a shame, and I but I understand how people come to the conclusion. Like, it's not crazy to say, okay, but Okay, so she's gotta go, I only have her for a short amount

Asha Brown 47:09
now. And I feel like you're right, this went so fast. We didn't even I feel like we didn't do anything. That's fine. But we just want much we did so much. But nothing. There's so much more to talk about.

Scott Benner 47:20
That's what the podcast is. It's everything all at the same time. But right. But I want to let people know it's we are diabetes.org. Right? That's correct. So if you're, if you're struggling with any sort of disordered eating, I go there. And what do I do? Do I reach out? How do I handle it?

Asha Brown 47:35
You follow the Did you know that we we've tried to make the website fairly clear. There's, you know, an about a section, there's a contact us section, the homepage states what we do. There's, there's lots of options for you to click on. And they will all reach me and my team? Well, yeah,

Scott Benner 47:57
I so seriously, I'm always as the podcast gets more and more popular, more people reach out and want to be on. And I feel badly about sometimes I get notes from people. And I'm like, this seems so good. But I don't know you. Like I can't I can't vouch for you. But you I felt like I could vouch for and I have to tell you that your connection to integrate it because Jenny Smith is a frequent guest on the show. Yeah, just having those connections and seeing what you're doing. I just thought it was really important to let people know about this as an option for them.

Asha Brown 48:28
So thank you. Yeah, thank you. Well, your your words, definitely have been the highlight of my week. It's really nice to hear well, it's

Scott Benner 48:35
only Wednesday, but I'm taking the compliment. Thank you so very much. I really appreciate you. Have a great day. You too. Bye, bye. first like to thank you for coming on the show a huge thank you, in fact, and remind you to check out we are diabetes.org. I also want to remind you, I also want to remind you to go to the T one D exchange at T one d exchange.org. forward slash juice box. Click on join our registry, finish the survey support Type One Diabetes Research and support the podcast. We'll be doing all of that in just a few minutes of time. And of course, touched by type one.org. They're available on Instagram, and Facebook. And right there on their link touched by type one.org. Check them out.

Thank you very much for listening to the Juicebox Podcast. Please remember to share the show with someone you think might enjoy it. And of course, subscribe in your podcast app. If you're listening in the podcast that please hit follow or subscribe. And if you're listening online, check out the apps they're free. There's tons of links to a bunch of apps that will work for you. At Juicebox Podcast calm, but in the end you can listen anywhere you get your audio, Subscribe, Subscribe, subscribe. It really, really, really, really, really helps the show. Thanks so much. I'll see you soon.

#492 Grace Under Fire

Grace is an adult type 1. Today she battles a low to tell her story.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:11
Friends, you're listening to Episode 492 of the Juicebox Podcast. And today, my guest is grace. Grace has had Type One Diabetes for quite some time. And today she does a real kindness, she tells her story. But while she's doing so her blood sugar gets low. And we continue to record as she treats, responds and rebounds from the low blood sugar, you're going to get to hear the whole thing. It's incredibly interesting. Grace. Thank you so much for sharing this with us. Please remember, while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. I just want to say one more time. Because when we were done talking Grace was like, I'm afraid that would be boring, or I didn't. It's just it's incredibly interesting. And it's a kindness for grace to share this with us. So enjoy the conversation. learn something from the low blood sugar, and then have a great day.

This show is sponsored today by the glucagon that my daughter carries g vo Kibo pen. Find out more at G Vogue glucagon.com forward slash juice box. The show is also sponsored by the Dexcom g six continuous glucose monitor and you can learn more and get started@dexcom.com forward slash juicebox.

Grace 1:50
I'm Grace, and I live in the North Country of Wyoming.

Scott Benner 1:56
That sounds pretty. Why do I think that sounds pretty? Yeah, because I've been I've been watching TV shows that take place in Wyoming during this entire COVID-19

Grace 2:07
heard your interview with someone talking about that there was a younger man that you interviewed a while back. I listen to your podcasts. And he's from landers, I think. Sure Wyoming. Yeah.

Scott Benner 2:23
Well, I've been watching I I've powerwatch Yellowstone. So that oh, I very much enjoyed. I also just got done watching longmire on Netflix, I seem to be in a modern Western phase. And so I just finished I finished longmire on Netflix. And now I've jumped at justified which is available right now on Hulu. But the I seem to be in some sort of a modern Western phase and Wyoming comes up a lot and all of them except for justify which is more like Kentucky. I think that's not the point. The point is grace. It sounds it sounds remote and lovely. Where you live. And I find that appealing a little bit but you're not there right now you're in California said

Grace 3:06
yes. I'm just not a big city, lots of traffic kind of person I don't. And although it's kind of on the outskirts of the major town, traffic where my mother resides, it is annoying for some little country girl like myself. And it's just challenging to drive and deal with, you know, the beep beep in Hong Kong. So I'm going to cut you off and get in your lane and you need to have a nice day. You're not

driving on an Indy Indianapolis 500 Speedway right. Now, there was a time in the day when I did do that. But I just not up myself from most of those stresses. So tell me a little bit about how old were you when you were diagnosed? I just turned eight. You were eight years old? How old? are you now? old enough to know better but too young to care about it. I'll leave that at that for a second.

I'll tell you I'll be 50 I'll be 59 in a couple of weeks. Okay.

Scott Benner 4:17
Alright. So you're 59 you've had you've had type one for 51 years. Correct. Wow. And how old your mom 80 something changes with changes. She's 8383 No kidding. Wow. And you're you just you're you're somewhere where she is now helping her? Correct. Gotcha. Okay. Well, how did you I have to ask first I guess how you found the podcast because you you fall outside of my age demographic a little bit for listeners.

Grace 4:50
But yeah, I know that in that fun. Um, let's see. How did I find you? Oh, I just been looking. I can Did my phone to listening to subjects of interest, right? Um, and somehow, I think I found you on Instagram first. Okay, and that's how I found you. And then I started squinting to read and look in and out, I just need to go on my laptop and see if I can make this work more easily for myself. And I found it. And then I connected your podcast, listening to my phone, cuz I'll run around the house doing household stupid stuff, and set the phone in a decent location, and just listen. And sometimes I'll actually sit down and listen to your podcasts, and I found them informative, and yet not so much. Because it's some of its new on the individuals and how they went about, you know, learning to manage. And because I was raised in a military home, I was just handed the insulin, you know, it was I was not allowed to leave the hospital until I was giving my own injections. And this is how you manage it. And this is how you take care of it. This is what you have to do. It's your disease, you take care of it at the age of eight. And so it was really different for me than what I'm hearing these protective parents and, you know, different types of women. There's a few out there that are a little more liberal with their kids. And but when they're diagnosed at two, then that doesn't work. No. Well, so well, I just,

Scott Benner 6:39
I'm sorry, to cut you off.

Grace 6:41
No, no, I just find it interesting the different ways that people were learning about how to manage take care of it.

Scott Benner 6:49
So is that what do you find? Or how do you find the more? Like, not simple? It's part of the of the conversations, the management stuff? Is it nearly the way you do it? Or how, like, when we talk about Pre-Bolus thing, and and you know, I'm

Grace 7:08
learning that there are times when I do need to Pre-Bolus and there are times when I absolutely don't, for myself as an individual with 51 years of Type One Diabetes from the old glass syringes, two vials of you know, long acting insulin that never worked for me, put me into shock or DK a, I was all over the map for a very long period of time until I went to pumping. So there are times when I do need to Pre-Bolus a little bit on being bold with insulin was something I've always done.

Scott Benner 7:47
You just always that was being aggressive. Yeah. Well, so there's a lot here that I'm super interested in. I'm glad I'm glad you're on. Do you wear a glucose monitor now? I do. Yes. Which one do you have?

Grace 7:59
I just moved to the Dexcom. Six, about 60 days ago, I was on the library. And it was just giving me too many low blood sugar readings compared to finger sticks. So Dexcom working it out. Gotcha.

Scott Benner 8:18
So now that you have a CGM on that you can see continuously, where where does your blood sugar? Does your blood sugar sit stable, or does it jump around all the time?

Grace 8:30
Um, yeah, it's still pretty. It vacillates to a certain degree. It It depends on my activity, you know, activity. There's three things that manage me. That's activity, medication.

Unknown Speaker 8:47
And so, right.

Grace 8:49
However, I can go for a 45 minute walk. And I maintain a certain levels stay at 116 to 110. And then 20 minutes after my walk. I bought them out at like 35. So

Scott Benner 9:06
okay, so what insulin are you using? I'm just using noval Auto blog in a pump. And you have CGM. Okay, what may I ask your current a one c ish?

Grace 9:19
You want to tell me exactly I believe it was a 5.9 Ah,

Scott Benner 9:26
okay. lifetime. Were you able Where were you keeping it in your 40s for example, a decade ago or more?

Grace 9:37
A little higher. I was in this mid 70s. When that was what I've been on a pump for 17 years okay. And I didn't want to go on when because they were huge and bulky. Originally on they were just like oh my gosh, cumbersome. I've never gone on that for eight years. The greatest endocrinologists I ever had, which I still love and would see him if, you know, I needed to this this is not geographically desirable, because he's in California and I'm in, you know, Wyoming. But um, he suggested it. He said, Well, I'm glad you waited until the technology got better. And I said, Well, I think it's time and I was in the 15th and 16th, with my agency at that point,

Scott Benner 10:32
and back, then you're using just some some sort of a fast acting instance, I'm sort of a slow acting insulin or were you like, mph and are an are like

Grace 10:42
it? Yeah, I was you using regular insulin. And a single to double, we tried single dose of NPH, we tried double dose of NPH. And for some reason, because it took them six months to diagnose me. Okay, we were in transition in the military life that I grew up in, I'm transporting relocating been to 35 different schools probably moved 14 150 times a minute. You broke up a little bit there. What

Scott Benner 11:25
did you say? Was your father a general?

Grace 11:28
No, no, but we did relocate frequently. And it was a lot to do with family family dynamics. I'm the youngest of three. I'm the only one that's ever had, you know, any medical problems, and we just lost my sister, she passed away unexpectedly. So that's why I'm here. I'm here to help. You know, my mother manage different things in her life.

Scott Benner 11:57
I'm sorry. You're just your sister passed recently. And she had been helping your mother?

Grace 12:03
Yes, somewhat. Mom is very stubborn, very independent. And I'm going to do it myself. And we only recently convinced her that she didn't need to be driving.

Scott Benner 12:16
She stopped going for a ride in California.

Unknown Speaker 12:20
Wow. Oh, so this

Scott Benner 12:22
is this is really something because you lived in a completely lived in manage your diabetes in a completely different technological time. And now you're, I mean, you're as modern as you could possibly be right now with your care. And your it's Are you having a lot of lows that are keeping your a one c lower? Like, are you under

Grace 12:44
probably a few more than desirable, but I took all my devices, I took my PDM and my controller into the doctor's office while I was at the blood lab. And that's in Colorado, and dropped it off while they downloaded and uploaded. And then I went back to get it. And so he was like, congratulations, she says, looks like you're doing he says I like your current settings. Because I too have that stubbornness. I'm gonna do it myself. And you can just write the prescription, please. You know, it's like, he asked me one time, I told him about, you know, your podcast, he says, You're not becoming bold with insulin, are you and we just laugh, because, you know, come on. Well. Alright, so the the military doctor that once they finally diagnosed me, he said, yeah, it's just don't deprive her of any, you know, food values or going to a birthday party or whatever. He said, to just give her a little more regular insulin. So that was how we managed, you know, 50 years ago. Why should that change now? Right.

Scott Benner 13:55
Are you telling me the doctor, when you told the doctor about the podcast, he was aware of it? Correct? Oh, I want to take a moment to thank all the people who tell their endocrinologist about the podcast. Thank you. That's really crazy. This was in Colorado. Correct? Nice. I'm huge in Colorado, Utah, too, in case you're wondering.

Grace 14:14
Um, I noticed that you know, you're you've pre international my friend you really got it going on?

Unknown Speaker 14:22
Yeah, well, I'm

Scott Benner 14:24
really thrilled that you like the podcast because it says a lot to me that someone who's lived through many different iterations of type one diabetes, and who I mean and I don't mean this insultingly obviously but you're on the other side of pod listening to podcasts in general, age wise, that you found it and that you enjoy it means a lot to me. It really does like it that's a very good sign to me about the show that you specifically can listen to it, find something interesting or helpful about it is really a is wonderful. I'm so happy They were talking today. I'd love to know a little bit about, I mean, have you been married through your life? You have children, like, what's a little bit of your background?

Grace 15:11
Okay, so I did the married thing once. And we're no longer married, I was unable to have children. And the I've been a parent. I semi adopted and an open adoption for boys. So they're a major part of my life. So I'm there. If you want to know the truth there, I'm there go to girl. Things are going, Hey, Miss corpus with other relationships in their life. And, you know, we talk about it. And I listened to them. And I worked with Exceptional Children for 20 years. And so that's kind of my background with that. The marriage didn't work out because I didn't like getting beat up and tossed around. And it was just not a good situation. And I don't tolerate that very well. So

Scott Benner 16:08
that's good for you What man is like in what part of your life were you married? What age were you?

Grace 16:14
I got married at 43.

Scott Benner 16:16
Okay, choo, you are a trailblazer in a lot of different ways. And this guy was a jackass. And you were like, that's when I'm not doing this?

Grace 16:24
Well, yeah, I waited and waited, and I let him make that decision so that the financial responsibility fall into his lap race. You wait, you

Scott Benner 16:33
waited him out? For money reasons that you are a tough lady?

Grace 16:39
Not really, I'm fragile, but I don't want to admit it. You know,

Scott Benner 16:44
I'm sorry, that that's terrible that, um, that anybody would lay their hands on you like that?

Grace 16:50
Well, he did it in such a way that well, you know, when you are of his type, a government official, let's just put it that way. You could get away with things that weren't obvious.

Scott Benner 17:07
Okay. So he was a type of person who, who nobody would have thought that or would have gone after had they thought it and so he had a little autonomy to be to hurt you. Without without any repercussions? Correct? Yeah. I'm sorry.

Grace 17:26
Well, it took me a while to figure out that, you know, I was not in a good enough situation. But the funny thing is, is is that, you know, I you know, my father basically raised me, my, my mom was, you know, had raised her two older kids and was deeply and heavily involved in their life, and she had returned to school to get her medical license finished up. And I was what my dad was getting ready to retire from the military. So he raised me for the most part. And Be that as it may, I've always enjoyed guns and outdoors and horses and you know, riding the rains with motorcycles and dogs. And so it was just like, and then you know, of course, I do know how to dawn, the dressing the tends to go to a banquet, or whatever. So when I met this gentleman we met. And we talked for hours on the internet. And finally, he revealed to me what he did and who he was and had to have my background check. He had to have me background checks just to date me. So that mean, yeah, I was like, Huh, interesting. And when I told my dad, I said, I must have done something, right, because I passed with flying colors. But there was another manipulation that I wasn't really aware of.

Scott Benner 18:57
making you feel important and Exactly, yes, exactly. increase. I'll tell you, I've recorded like 500 of these and still people surprise me all the time with stories that I've just never heard before that that's going to be one of them. How long were you with him before you got out?

Grace 19:18
From dating to let's see. 13 years? Oh my gosh, yes, sir. 13 years. Oh,

Scott Benner 19:28
how did you handle like with all that going on? diabetes come into the picture, or did he? Was he basically unaware of it?

Grace 19:37
Oh, yes. Oh, yes. I've been open about my diabetes because I am. Um, I easily. My blood sugar shifts like it shifting now and I can feel it. Sometimes I don't feel it at all. So sometimes I'm a little too bold with insulin. So my I don't think I would ever be a candidate for the horizon, or the loop system, because I'm manipulate my dosage according to what's going on with me. What do you think constantly?

Scott Benner 20:15
Okay, well, so I'm sorry. So I have two questions now because I use the wrong word before but what I meant was while you were married, would you just manage your diabetes on your own? He was not involved in it.

Grace 20:27
Oh, yeah, pretty much and he would, you know, throw temper tantrums because, you know, he didn't understand why why would be taking some insulin when you know, I had drink 40 ounces of juice to come up from a low blood because the gastro precice right. So that's why it takes a while for me to respond to getting my blood sugar backup.

Scott Benner 20:55
If it drops you have gastro you have gastroparesis, too. And, and I mean, honestly, like, I'm thrilled that you found all the technology you found but if you had a one sees in the double digits through a larger portion of your life, that's what I was going to ask you. Have you had any repercussions of it? So gastroparesis is one Do you have anything else?

Grace 21:14
Um, yeah, I've had multiple eye surgeries, hand surgeries. That, you know, with the triggering fingers. I have neuropathy in my feet. pretty severely at times, you know, I get rested. I take Tylenol for the discomfort and once in a while and gabapentin but I'm not fond of that. Because it just makes me so what's the word I want? puts me into lala land and I don't care for the double vision or the side effects are worse than the relief that it semi helps with.

Scott Benner 21:58
I just had a little bit of noise on your end. So I didn't hear the second medication that you're saying you don't like to take what was it?

Grace 22:04
It's called Gabba Gabba pinton It's a neurological it's it's a for pain and it supposedly is to help neuropathy.

Scott Benner 22:18
I see it here anticonvulsant anti-convulsant and nerve pain medication it can treat seizures and pain caused by shingles and apparently gives you double vision and doesn't make you feel good. Is

Grace 22:32
it makes you groggy and it does meet some people. I mean, they take it in the hands for have by handfuls and it's perfectly fine. No kidding. Oh, I

Scott Benner 22:41
see the uses for Scott while he uses restless leg Fibromyalgia or they use it for a lot of different things. sciatica. Okay, sorry, I went down a little rabbit hole there on the internet. I got a little lost. Alright. So what is it like when you've lived your life with a onesies that are higher and and then all of a sudden, you've got this pump? And then now more recently, you have a glucose monitor? Is it like how do you feel physically? First of all, do you feel any differently than you have in the past?

Grace 23:21
Um, yeah, I physically, I still feel pretty good. For someone that's had it as long as I have, and you've been through, you know, the traumas and the the changes of control as versus I feel more in control of it than I have ever. That's excellent with the CGM. And the you know, I, I don't know if it's okay to say I'm pretty sure it's all right to let you know that I am using the Omni pod. Dash.

Scott Benner 23:59
I heard you say PDM earlier. So I figured you were using Yeah,

Grace 24:03
right. So and I haven't been using it all that long. I've only been on the on the pod dash for a couple of years. But when you are used to wearing you know the tubing and you have enough accidents between you know, getting cut or caught on something, you're not aware of it and it's disconnected and you all of a sudden you just fall out and they're you know lifting you into an ambulance and you come through and like what happened and very good. It looks like your tubing got good. So that gets to be too dangerous for somebody that remains active. Yeah, as myself. I'm not as active as I would like to be or once was but I just I'm not ready to give up yet. No. It's just not there.

Scott Benner 24:56
You don't sound like somebody is gonna give up to me. But I take your point. It's funny, like, you know, when I when I do the ads um, you know, I'll say sometimes like, you know, you don't get your tubing caught on a doorknob and get it your site ripped out or, but you're even saying that can happen and you just won't know what happened. And then

Grace 25:12
I had it I had it happen a couple of different times in different ways. But yeah,

Scott Benner 25:17
yeah, that's not good, because now suddenly, you do not have any insulin that you think you do. And I guess that that quickly escalates to very high blood sugars. I was talking with somebody yesterday, who had a malfunction with their pump. And they said, like, you know, what'll happen if I just don't take insulin till I get the new pump tomorrow as I get I'm probably dead. You know, like, you can't not have insulin. It's I'm always fascinated by by how little sometimes people understand that insulin they're getting, you know, if it's slow acting through injection is the is the is the thing, keeping them going. You know, like, the minute you take it away. It's It's It's a bad it's bad news, you know, and, but I never thought of it that way. But you lived in a different time with diabetes. That really is interesting.

Grace 26:10
Yeah, we had to boil my glass syringes, right? They had the disposable needle caps that were like 10 Penny nails to an eight year old child was like,

Scott Benner 26:24
little big, those needles weren't as fine as those little ones are now I guess.

Grace 26:28
Yeah. Oh, goodness. No, absolutely not. And, you know, the only way that they could test my blood was to draw intravenously. And that was even more traumatic for me. I was like, that my dad had to just sit me in his lap and wrap his legs and arms around me while they you know, someone else held my arm out for them to draw it. And I'm still I hate that I hate hated I hated

Scott Benner 26:59
blood draw in general just doesn't work for you. Because of all the times when you were younger.

Grace 27:05
And I'm scarred. I'm scarred. I mean, physically. There's scars on my arms. From you know, the drawing my blood. So, yeah, well, military hospitals were not up to date.

Scott Benner 27:19
You were probably just an end. It's a it's a it's a kid of a someone and you have diabetes. And it's got its, I mean, I'm just I haven't even done the math, but 50 years ago. 1970 ish. Is that Yeah, about you when you were diagnosed? Maybe 1969 69.

Grace 27:38
Yeah, it was in March of 1969. I remember like it was yesterday. Because I was sick. I had been sick. Well, we had relocated from the east to the west, literally. And it was you know, I don't know if you're familiar with I got a treat for a little bit low. They

Scott Benner 28:04
can we take a take a U turn for a second? What number you What number are you trading at?

Grace 28:12
It's dropping rapidly. I'm at 70 that's what did it say? It's at 80. I knew I said 71. So I'm gonna go ahead and choose here. Yeah, the puppy already he starts

Scott Benner 28:34
a dog they're way ahead of time. issue a dog there with you or you're getting low and confused and you're talking to yourself which is going on a little bit of both. g Volk hypo pan has no visible needle, and it's the first pre mixed autoinjector of glucagon for very low blood sugar in adults and kids with diabetes ages two and above. Not only is chivo hypo pen simple to administer, but it's simple to learn more about. All you have to do is go to G Volk glucagon.com forward slash juicebox g vo shouldn't be used in patients with insulin, Noma or pheochromocytoma. Visit g Vogue glucagon.com slash risk.

The first time I ever heard about the Dexcom was years and years ago Arden's nurse practitioner told us that there was this device that you could see your blood sugar in real time on and it was called a Dexcom. She said, Are you going to get a Dexcom and I was like, I don't know what that is. So she explained to me that she had a kid in the practice who was super excited to get a Dexcom so that they could learn how to eat their favorite snack, this this thing that they had struggled with constantly with a spike. And they thought that by seeing their blood sugar, you know, they might be able to make better decisions with insulin. And what a What a fun thing to think back on back when that was just like a an idea in someone's head like maybe if you could see it, it would be easier. Oh, what an understatement, huh? Well today, many years later, I can tell you that that absolutely turned out to be 100% true, and a lot more actually. So the Dexcom gs six allows you to see your blood sugar in real time, not just the number, but the speed and direction. And this information is invaluable. It helps me every day to make amazing decisions about Arden's care. It could help you to I think dexcom.com forward slash juicebox alerts where you want them, you want to be alarmed when you go below 90 you can do that. You don't want it to happen until you're below 80. You can do that 70 it's up to you. You want to hear a rise alert. I like mine at 120 on Arden's phone, it's 130 these distinctions are yours to make. And you can decide who if anyone you want to share your data with. So Arden's data is shared with me and my wife. But it could also be shared with up to eight more people, right so Arden can see it plus 10 more people of her choosing. Now if you're an adult, maybe that's your husband, or your mother. If it's for your child, it could be anybody daycare provider, school nurse, it's completely up to you choices yours dexcom.com forward slash juicebox. I'll tell you this, were these results are ours and yours may vary. But my daughter has zero diet restrictions, sheets, a fairly classic American diet. And her a one C has been in the fives for seven years. I think a lot of that has to do with being able to see the data, being able to see where her blood sugars going, and how fast it's getting there. I hope you check it out. dexcom.com forward slash juicebox. There's links in the show notes to that. And all of the sponsors. You can also find those links at Juicebox Podcast comm

Grace 32:23
Well, he he moved himself from one position to the next and came in lay next to me by my feet. And he just kind of groans at me if I'm up and about but if I'm not awake, he scratches me off the bed and he'll sit beside the bed and start barking and let me know.

Scott Benner 32:41
Is he on alert dog? Or does he just

Grace 32:43
Yes, he is. He's, he's a da da diabetic alert dog. As I stepped down my orange juice,

Scott Benner 32:55
do you see are you give like a straight arrow down or diagonal? Or when you're Dexcom? What are you saying?

Grace 33:02
It's a straight arrow. it'll drop even more even after I get the juice on board.

Scott Benner 33:08
Because the gas your prices, you won't pick the juice up as quickly.

Grace 33:11
Correct. And I can always what I typically do now that I've found works is I'll drink my juice and I'll open up for a sugar packet and just absorb that through my cheeks, gums your cheeks, right. So even the gel tubes don't get on board as quickly or something like this. So, how,

Scott Benner 33:35
how frequently do you have to do this?

Grace 33:39
Usually about daily. But I'm just too bold with insulin sometimes because when I see it when I'm rising rapidly, I correct right away and it kind of gives me that opportunity.

Scott Benner 33:55
Get too aggressive at the wrong time. So you have trouble I guess Pre-Bolus and because the gastro priestess you don't always know how quickly the food is gonna get taken up. Right? Yeah. Have you tried? Have you tried Pre-Bolus Singh some but not all, and then putting in the rest as soon as you see the food hitting you.

Grace 34:17
That idea is very new to me. Um, but I've heard you, you know, on your podcast, talk about them here because I thought Hmm, you know, that might be something worthwhile for me.

Scott Benner 34:31
100% So, I'll talk for a second so you can take a break, but like the way I you know, I've said this before, but I had someone with gastro precice contact me privately to try to talk through this idea. And I really didn't know what to say obviously. And as we were talking about it, I thought the closest thing that I imagined to her situation and yours is the idea of a young person, a toddler who people say well, I can't Pre-Bolus because I don't know if they're going to eat or not. So I just changed that in my mind to I can't Pre-Bolus because I don't know if the food's gonna be there or not like working, you know, hitting my blood sugar. And so what I always tell young people, you know, parents of young people is I would put some in, you know, pick an amount that feels safe. And then as soon as you see the rest of it hitting, like, go ahead and put it put it in. And I don't know that that's not a great idea for you to try at least because, because maybe in some situations, you'd notice, well, I don't need it right away. And it could end up being it could end up being in a long amount of time, right before the food hits you. And then other days, it depends

Grace 35:38
on the type of food I'm consuming as well. Pizza versus, you know, vegetables?

Unknown Speaker 35:46
Or is it

Scott Benner 35:48
like this? Or it depends on your system to?

Grace 35:53
Yeah, it does. It depends on the time of day and how much activity and did I go for a walk? Or did I not? Am I packing up my car to go on a 1700 mile trip? How many steps I'm taking, right? And it's the day before, so the activity doesn't normally hit my body right away. I found that to be very interesting as well. And I'm, you know, the gas trio preseason has been happening since I was in my late 20s. It was diagnosed in my late 20s.

Unknown Speaker 36:38
I'm

Grace 36:41
sitting back down because if I'm if if that's a problem with headphones, I tend to be active tend to get a little like, Oh, I need to pace your walk away. And I probably shouldn't because you know, my blood sugar's now at 61. But I don't believe it's entirely that low.

Scott Benner 36:57
Do you want to test out let me listen. To be perfectly honest, somebody's having a low blood sugar on a podcast about Type One Diabetes is content. It's you're not wasting my time. So right now people are like, I wonder what this lady is gonna do. But do you want to test with a meter? How are we gonna do it?

Grace 37:14
No, I'm fine. Sure. Yeah, I don't. It's because of the interstitial fluids. If I'm leaning or tapping, or there's, you know, if I were a tighter sleeve around the CGM. I feel like it's just possibly be that low, but I'm not, you know, passed out or babbling and

Scott Benner 37:40
where do you usually pass out? out? And secondly, do you want to give me your location so I can call 911 for you if you need me?

Grace 37:47
Well, the dog is not blocked the door he won't let me leave the room. He's like, yeah, I'm moving over here. Cuz, you know.

Scott Benner 37:56
So he wants you to stay still and handle yourself now. Yes, he knows that you took in carbs.

Grace 38:04
Yes. And I completely. I went to I have, you should see my PDM you'd love this. What I did when I saw it, I've moved to I'm not hungry. So for an hour, I won't be getting any insulin in a Temp Basal.

Scott Benner 38:25
So you did a Temp Basal decrease, like all the way down like 0% for an hour? Yes. Will that cause the high blood sugar later or not necessarily.

Grace 38:37
What I'll do is I'll I'll cancel and eventually, as I see the new bunch of CGM start to come back up. Yeah. I look at it a lot. Because in my work allows it if I'm working, if I do, if I'm working a contract from home, I can, you know, manage my diabetes better. If I'm out in the field, doing inspections, it's a little more challenging, because I'm more active. And it just, it's just nice to have this. It's just a big help from my lifestyle.

Scott Benner 39:15
Yeah, well, someone like you who's had so much experience prior to this, just being able to basically flip a switch and shut off your Basal insulin. must be pretty exciting, honestly.

Grace 39:28
Oh, it really is. It definitely is very exciting. I didn't you know, because I looked, I studied technology. And I have a couple of degrees in AI but that doesn't mean anything because, you know, data technology, I saw it come into play and just become so dynamic so quickly, so rapidly. I knew I went I'm never going to be able to keep up with set this point. You know, so I'm I'm glad I have that education. But I'm more happy about it being available to treat diabetes type one.

Scott Benner 40:11
No, I agree. I think that it's, it's pretty amazing how far we've come so quickly. And even though we talked about, you know, 50 years is being your lifetime with diabetes, that seems like forever. And it really is for you personally, you know, in, in the grand scheme of things in the way technology moves. In the last decade, things have moved exponentially faster than they did the, you know, maybe the four or five decades prior, we've gone farther quicker. And it Oh, absolutely, yeah, it seems to just, hey, last night, one o'clock in the morning, last night, I got up to let my dogs out. And as I'm coming back upstairs, I get a notification on my phone, that, you know, astronauts are about to enter the International Space Station, and I push a button, and five seconds later, I'm watching astronauts go from, from a spaceship into a space station on my cell phone while I'm walking up my stairs. And I'm Listen, I'm in my late 40s. And I had a computer when I was 12, or 13, probably 13 or 14, I had one of the very first like, two E's from Radio Shack first, and we'd like common words, and you know, and and so being a person who's been right there it computing from the very beginning. I'm still going to tell you that I still had a moment last night where I was stunned that I was looking down at a crystal clear screen watching astronauts float into the space station. I thought oh, my gosh, that is really an exceptional leap that we've made, that they can do that and that I can see it, you know?

Grace 41:47
Yeah, especially because we're watching the after effect on genius, black and white screen TVs that was, you know, one of the best TVs available. You know, we showed,

Scott Benner 41:59
we showed Arden Arden Sala an old console television the other day. She's like, What is? Her first question was why is the TV on the floor in this picture? mounted to the wall? She's like, why is it on the floor? I'm like, it used to be part of furniture. Yeah, then we found like, then we found a piece of a picture where you could see like, inside of a console television, let's hop in the bot and the back. And she was just like, what is all that? Red tube? Right? There were tubes and big like circuit, it was no circuit boards, you know, tubes and all this stuff. And she and now our television is is whisper thin, you know? And it's I mean, I basically have a TV now that's just a it's it's basically a piece of glass with a small computer attached to the back of it. I mean, honestly, that's kind of what it is, you know, with this?

Grace 42:52
Yeah, absolutely. Because the circuit boards are so paper thin. And they're you know, they're made of, you know, copper, and aluminum. And, you know, the circuit boards. I used to work after school. for IBM, I was I worked for an independent contractor that we wired, these, I forget what they're called now. But I would follow this, you had to be able to detect your colors, you need to know what red, yellow and blue. That was it, you know, you could do that you can read the diagrams and follow the wiring, and then switch it. And they were huge. They were big. There was just an after school job I made, you know, like 250 an hour. Right? Yeah. And this was I wouldn't, you know, rope these wires, this wax string together and send these this diagram in multiple directions, and then add the connecting ins to it. And it would go to a different department after I did that in my, you know, my supervisor would come by and he says, I need 10 people just like you that can do this so that we can increase production. I said, You know, I said look at what it's doing to my hands. He said, Oh, we need gloves on you. And I said yeah, something. So a friend of mine wanted to earn some extra money after school too. So I said, Hey, Robin, you want to go check this job out this for me, my employers, my supervisors looking for you know, more help. She said, Sure. So here we are two of us girls, and the rest of them are men and they're these, you know, huge, big, gigantic, enormous guys working around us and like we can't keep up with these young women. They're doing a better job than we was just for extra cash. Yeah. Yeah.

Scott Benner 45:02
Wow, extra cash at 250 an hour. You must have been rolling.

Grace 45:06
Oh my goodness. Oh, yeah. Hey, how are you feeling? Oh, I'm still low, but you know, it's not beeping anymore.

Scott Benner 45:17
What did you Dexcom? Say? I'm 49 it says 49. So now are we at the point where we think if we test you're more like 60? Or do you think you really are 49?

Grace 45:27
I think I'm gonna go ahead and give it a finger stick

Scott Benner 45:29
god, I'm just do it. You're not going anywhere? No, where am I going?

Grace 45:34
Can I walk without falling down? should see the look on the dog's face? Are you crazy moment because when we're out walking, he'll tap me in the knee. Right on the knee. Right? And say, Hey, you know, this is not good. We're in the vehicle. He has a compartment in the back where he rides or this mat and he's tethered in. It's like, they'll start whining. And he'll he'll pout at me from an Aussie. I'm in the rearview mirror. And I'm like, is it blood sugar? Right now pull over a tree. I may have to take another pack of sugar. But let's see what we get here.

Scott Benner 46:33
That's the Contour. Next One meter you have right? If you have it, you got it with a dash. Correct? Yeah, it's good meter. We're gonna get a good number here. Let's see.

Grace 46:52
Yeah, it says I'm 73. So you know that still any? I don't know if it's my scanner, where I put my the transmitter in the sensor?

Scott Benner 47:07
Well, I would tell you that if you were dropping quickly, and I would expect this. So I expected you to be higher than the number on the CGM when you test it. So you're dropping quickly. You caught it with some fast acting sugar, which I think means that your body's that the actual reading inside of your body is going to come up probably five or 10 minutes before the CGM can can really figure it out. Because it's all kind of happening so fast. I don't think you're putting your sensor in a bad place. I just think that you know CGM Technologies a tiny bit behind real time. And you were speaking Okay, like I didn't think you were 49 the way you were talking. I know you probably don't feel great, because you're probably still feeling the low. You haven't gotten the benefit of it coming back up. Yeah. Is that right?

Grace 47:55
Yeah, I'm still. I'm stuttering.

Scott Benner 47:59
Right. Don't listen, unless you listen back to this one day and end up saying, I never worked in a place where I worked with technology and wonder where I came up with that story.

Grace 48:11
Oh, no, you kidding? I grew up with an engineer from Ford aerospace, my, my cousin, my cousin's dad, my cousin, my first cousin, my second cousin, my second cousin, my third cousin, second, third cousins. Yeah, he was an engineer for Ford aerospace. And then my stepfather was a he worked for the skunk team at Department of Defense's, an engineer. So he was a lot of fun. He and I got along great. But he my brother and sister did not like the guy. God rest his soul. But he I understood him and I liked him. And we enjoyed some of the same things. Watching, you know, television and DVDs and you know, yeah, he was brilliant.

Scott Benner 48:58
That's nice. That's Oh, yeah. Well, are you I want to make sure you're feeling okay.

Grace 49:04
Oh, yeah. I feel pretty good. Yeah. Yeah, I'm not running around. I'm sitting down and trying to behave myself. So that.

Scott Benner 49:14
So tell me a little bit about Let me ask you a couple of little interesting questions that are interesting to me. Can you tell me about how much you weigh in what your basil rate is?

Grace 49:24
Yeah, my basil rate is 13.2 a day? Yes. Okay. So I weigh about 110 112 pounds, some five foot 313 divided

Scott Benner 49:41
by 24. Are you getting? point? 5.55 an hour?

Grace 49:47
Just Yeah, about that. Point 5.55 an hour. That's my favorite Basal.

Scott Benner 49:56
What's your favorite?

Grace 49:56
Pick it up, pick up, pick it lower. If I'm going to go out exercising, walking? Or if I'm going to take the dog to the park

Scott Benner 50:05
overnight, how do your graphs look overnight? Are they stable and lower? Um, they vacillate a little bit. How about how much? Just the ability is there? Like, overnight? Are you up and down? Are you in a straighter line?

Grace 50:25
I'm in a straighter line for the most part. Yeah, that's my trickiest moment. You know, right before I get sick, like if I'm going to get the flu or if I'm going to get bronchitis typically late. Winter, I come down with it on a pretty regular basis. I'll have a severe low the day or two before, I'm really sick. Okay. Which is a big indicator.

Scott Benner 51:00
Yeah, the illness is coming. Right? I think Arden has that same thing if Arden gets like a head cold, or you know, nothing like stomach related, but like a head cold, or one of those things where you're functioning, okay, but you don't feel well. She seems to need less insulin during those times, as well. But it's interesting that you get, like stubborn lows, and then then you see the illness. a day or so later. That's interesting. Well, I'm just I'm just trying to understand, like, so you have a couple of different, you know, challenges, obviously, one of them is the gastro priestesses. That is, I would think the biggest one, the idea of how do you stop spikes at meals if you don't know when the meals are going to impact you? Or if they ever well, right? Or if it'll be hours and hours later? And then it sounds like during activity, you can drop pretty easily. Like those Do you think of those as your two biggest kind of hurdles with diabetes? I do. Yeah. You know, I was a swimmer. Imagine that. Like that, you're laughing at the idea that you were a swimmer.

Grace 52:14
You know, I dive and we would practice in a 50 yard pool, lot of flips, a lot of back and forth, back and forth. two miles of exercise is swimming, you're using every body muscle that you possess. And my favorite sport was Polo waterpolo. Because I, I just enjoyed, I enjoyed it, it was fun. So um, but competitively I was, you know, like, on the D team, the slowest swimmer, I, I could do length, I could swim forever. But I couldn't compete because I wasn't fast, I wouldn't stay on the surface. Because when you're swimming competitively The idea is is that you use the water to move through it at the level of the water. That's the idea that there's a lot of resistance, you know, if you're not swimming streamline, so as is for most of us, you can't, you know, teachers become instructors and teachers. If you can't do it, make it work for you, you become a teacher of the art. And that's how I figured it out. You know, and I started working with Exceptional Children in the water to practice my art, because I'm better instructor of it that I am a swimmer of it because when you watch me demo is like, that's a butterfly stroke. It looks like you're you know, you've been hit with stroke lady. You're sure you're not having a stroke in water.

Scott Benner 54:10
I think you misspoke. You're not showing us a stroke, you're having a stroke. And listen, I wonder too, when you were younger with the higher blood sugars, if maybe you physically just weren't able to move as quickly as maybe you could have as well a well could have been very well. Isn't it fascinating? Isn't it fascinating that that so many people and you're just a good example of it right now but who lived prior to this technology and honestly who lived today without it? Our I don't know what to say like I don't know how you would put it but it sounds to me while I'm listening that you were your life was was restricted in ways that probably after a while you didn't recognize where restrictions but that your physical, you're physically and maybe mentally Because of like low blood sugars or high blood sugars, were being held back and you didn't even really know I guess you just doing the best you could with the information you had and, and the way things were done back then, do you look back on it? Is it sad to look back on it? Or you just have

Grace 55:16
that where you are? It's not sad. It's what I knew. Yeah. Okay. So what I think is probably, The disadvantage is that my parents were not educated any differently, either. Right. Growing up on military basis, until I was 19 years old. And then, you know, moving from that? Well, yeah, because, like I said, My father is basically the main parent. He was the main parent in my life for a very long time. And we he let me drive the golf car. You know, that was always fun. I didn't play golf, but he would send me on the putting course you'd say, my daughter's putting for me. You had a bad ankle, you know. And so his, they were just they loved it. They loved that, you know, I could put, and I was pretty daggone good at it. So you know, it was like, okay, you're up there. And I would just straight out there with his putter. I would make the putt and they would be sitting over standing over on the sidelines, making their bets

Scott Benner 56:47
about whether or not you think about

Grace 56:50
Yes. He would say, Hello, no, she sees that roll. I don't think she sees that, that turf the way I'm seeing it because I'm in a different visual advantage. And he would cue me in a little bit. He said, you when you sink this putt, and you know, you can have anything at the clubhouse you want.

Scott Benner 57:18
He said, Look, if I think this but I'm taking half this money, you ain't How's that?

Grace 57:22
Money was never no money. My sister, my sister was driven by money. I've never been driven by it. Yeah, you got it. You got it. You don't you don't. It's just it's never been a force. For me. If the more I have, the more I spent it, any of us?

Scott Benner 57:44
I don't know. I like to try to save some money.

Grace 57:46
Anybody can make money. It's keeping it. Yeah, oh, investing it properly. That's the ticket. That's the hard thing to do.

Scott Benner 57:57
not spending it is a is the thing. They don't tell you that you have to teach yourself. I you know, it's funny, we were just talking to my son the other day. And he asked if he wanted to try investing money a little bit. He had, you know, his a couple of his friends are doing it. And he wanted to try as well. And so for Christmas, he asked for a little bit of money that he could like, instead of a Christmas present, he's like, Can I just have some cash, I want to try this thing. And so he and I were talking about it. And I told him I was like, you know, when you were little, you know, people would give you money for your birthday or for Christmas. And you were our first kid. And you know, mom's first reaction was, well, we'll put it in the bank for him. And I said, Let's let him keep some of it. And like we can put some in the bank. I said, but you know, we'll teach him how to put some aside. I was like, but let's let him have it. Because I found that my concept was that given a kid $20 or $40, or sometimes, you know, $50 that come in a birthday card. And given them the ability to spend it so that he could see what happens to the money once it's gone. Like let him experience having it Yeah, right. And then suddenly not having it and then seeing that, oh, I have this thing now. And then realizing Three weeks later, I don't even know where that thing is right. I'm not as interested in it as I thought I was. But the money's gone now. And if I would have held on to this 50 and put it to this 50 and this 50. And on and on, I could have actually gotten something substantial. So we sort of use that money as a teaching tool. Almost. Yeah, I'm almost imagining that maybe it'll be $1,000 over their childhood, right. And they'll probably lose it, it'll probably be gone. But that the the lesson will be more valuable than the money. And I have to say like both of my kids are very good with money. Like even if you take art and shopping for clothing and she picks out a couple of items. You'll see at the very end of the shopping trip. She looks at it again and she puts some of it back. It's just very like oh you know what, I picked these three things that I like but as I'm living with them here and wandering around, I realize I just want this one thing to put the other two back. It's, um, it worked out like I should knock on something because it worked out really well. Letting them use it ended up being more valuable than making them save it, because they wouldn't know what they were saving it for, you know,

Grace 1:00:16
what I did the same thing with my kids that my dad did with me was like, you come you, you come up with 50% of the cost of the item that you want. And I'll put in the other 50%

Scott Benner 1:00:34
It's nice. When my son

Grace 1:00:35
left, whether it was closed cars, no matter what cameras, it didn't matter, you know, it's like, here's how it works with me. And I still like that principle because it taught me how to manage money.

Scott Benner 1:00:46
Yeah. Now we did that when, uh, when Cole was leaving, like the middle school age, you know, 1314 he was heading into high school. And he, his hands were getting bigger. And he said, I my hands, not gonna fit in my baseball glove much longer. And he wanted to get a new outfielders glove and a new infielders glove, but they were very expensive. And he's like, I can just get a cheaper one I can afford the cheaper ones, say, but I want to get a good one and use it all through high school. Maybe I can even have it for college. So I said, Okay, look, you pay for half and I'll pay for half and we'll get you good gloves. And he an infielders glove that he got when he was 15 years old, maybe 14 years old. He still wears while he's pitching in college. And it still holds up for him because he has he and now he sees I spent a little extra money I got something of a higher quality. And look. Six years later, I still have it. You know? Yeah, I'm

Grace 1:01:47
all about the quality. Forget the quantity. Give me the quality over the quantity any day. I'd rather you know, hold out and get you know this item. pay a little more for it because I know what's going to lie. Yeah, no,

Scott Benner 1:02:04
I call that the dollar store theory. I would rather have one $500 item than $501 items. Yes, any one thing that I can really sink my teeth into. So how are we doing with your blood sugar? What's going on? Now? I hear I hear rappers.

Grace 1:02:19
I'm having a Welch's fruit snack. Oh, yeah, it's still not great.

Scott Benner 1:02:26
So the CGM still reads lower.

Grace 1:02:30
went down and then yeah, it was weird, because then I was riding at 49. Now it's leveling off at 44 went from 49 to 42. And now it's,

Scott Benner 1:02:44
yeah. Now if you do you think if you feel low, or do you feel

Grace 1:02:49
I'm a little shaky, but I know that it's gonna come back up. Because I've treated it's just with the kasriel preseason. It can take me an hour to come back up to like 93 and then right out at 93 to 102 for a while. Right.

Scott Benner 1:03:05
Wow. Yeah, it's and you dude, like, I'm not asking you to do it again. But do you think if you did a finger stick again, you'd be lower than the 70 some that we got the last time

Grace 1:03:17
we can check it out. Don't mind toasting, for the podcast. Well, just for you guys. I call you Scotty i like i like Scotty you

Scott Benner 1:03:26
do refer to me as as Scotty in your private life, even though we

Grace 1:03:30
do yeah, I listen to Scotty. And they're like who you're talking Star Trek or what?

Scott Benner 1:03:38
Hey, I gotta be honest with the grace. It's way better than that app on taking that.

Grace 1:03:46
Well, a friend of mine. I used to hang out in this group of people. But she's still my friend. Her son was diagnosed at the age of two. And he's camping out with some friends over this one weekend. And all of a sudden I get this phone call. Then you come over we need your Oh, we have. We have Andrew for the weekend. His parents are out of town and like, well, don't panic. I'll be over No. Don't panic. Is he still breathing in and out? Yeah, here we are. It's dropped on. It says it's now at 69 when we had originally tested it was 73.

Scott Benner 1:04:43
So you bounced a little and you're leveling off but drifting back again. Yeah, you could feel that enough that you knew to just have the first tax.

Grace 1:04:54
Yeah, so danger danger will Robin I went to Costco like, I got. I think there's 90 packs. Yeah, there's 90 of Welch's fruit snacks. So I got

Scott Benner 1:05:11
that bill socks if you get that big 40 pound box of food snack. Yeah, I think everybody listening knows that box of fruit snacks. Because when you buy him in the grocery store, you have to end up paying $10 for like 30 packs. I'm it's a ripoff. I mean, it really is. It's not even food. It's just like, whatever it is, you know. But it's interesting, too, because, you know, obviously the gastro priestess is at play. Because those things hit really quickly. I mean, those fruit snacks are there like later

Grace 1:05:45
in the day? If I'm out walking? Yeah, they're gonna get on board quicker, because it might, you know, my body is heated up and I'm moving around. It's going to get into my system more quickly. It's interesting.

Scott Benner 1:06:01
Interesting. Well, I have to be honest, this didn't go any way like I thought it was going to and yet I find it really interesting. And I think people are going to enjoy listening to it.

Grace 1:06:11
I like you engaging with questions. Ask Me Anything that you really want. Yeah. Go ahead.

Scott Benner 1:06:19
Well, no, I appreciate I, you know, obviously I've been trying to, to go a little slower because you're because you're doing what you're doing over there. But I guess I guess my biggest thought is what would you tell people who are diagnosed now with this technology? But don't want it but can't afford it? Like, would you say like, if if I put you in charge of the world? Would everyone who has type one diabetes have this stuff? To the world? Oh, my goodness, I give you the magic wand. Grace, you'd be in charge for a second?

Grace 1:07:00
Yeah, I would definitely. strongly encourage them. Yeah, to consider it. I mean, now, I'm well educated in your, you know, podcasts. Right. I was born with a visual problem. Okay, I live with it all my life. So it's nothing new. So I'm very intent listener. When I listen to, you know, podcasts of all sorts, I retain that information much better than I would if I had read it. Okay. So, I would suggest to them and strongly encourage anybody with, you know, type one diabetes. First of all. Find a good endocrinologist, and get a prescription for an insulin pump with a CGM. Just now I see advertising and I don't have TV at home, I just have, I have a big screen and I play dv DS, but I don't subscribe to any internet. I have internet but I don't have, excuse me. I don't watch cable TV. Okay. I've been watching Internet TV for almost 10 years now. And so I would have seen it here because of where I'm staying there. The labor is encouraging type one and type two people to try their device and giving them a free test drive of it. You know, subscribe to it and test drive it and see if it works for you. You know, doesn't matter what CGM. They're all about the same. They do. You know, every five minutes they test they give you a reading, you can swipe, you can use your phone, you can use your laptop, whatever technology there is, at least try that. You know, and then, you know, maybe an insulin pump would help you because some people are so good at what they do on you know, Lantus and multiple, you know, injections daily, that they would not benefit from it.

Scott Benner 1:09:26
Oh, I agree. No, I know a number of people who are MDI that do have amazing outcomes, and they're really on top of it, but having the technology, I just I was just wondering, because you're a person who has not had it. Plus, you didn't even have insulin that worked well, you know, nearly as well as the insulin you have now. I mean, honestly, Grace's, if no vlog existed 50 years ago. You probably don't have gastroparesis right now. Don't you imagine? The nerves and other nerve issues?

Grace 1:09:56
I would imagine. Yeah, I would have had better tighter control. But I was very liable and brittle from the get go. I was in. I was passed out in DK for a very long time. When they finally got me diagnosed, I mean, it was that severe. My parents had taken me into the clinic three times on the fourth time, I was just gone.

Scott Benner 1:10:21
Yeah. Well, you've read other people's diagnosis stories that are similar to yours, right? They go in, they think it's one thing they think it's another thing. Nobody ever checks your blood sugar. And you know, you get on

Grace 1:10:32
even to this day when I had all the classic symptoms, but my symptoms were not all that classic. And here's the, here's the here's an area. That's questionable. Okay. And it happened with my friend's son, too. He was two years old. I was eight years old, immediately following my vaccines. Right. I became sick. Okay. Yeah. And I got sicker and sicker and sicker and sicker. So vaccines have been linked to autism. They've been linked to other things. But changing, you know, the government's idea of is this a benefit? Or is it? Can it cause problems? Right? How many people in friends of mine, I get this phone call. This was in 2006 565 2005. I get this phone call. Now. This man is a triathlete. He has two daughters, that are very healthy and vibrant and a wonderful wife, this family. And they get back from Germany. And I get this phone call. He's like, Grace, how are you doing? I'm doing pretty good. I said, What's going on? Because he was originally talking to my husband and my husband hands me the phone. And he says, Tim wants to talk to you. So he hands me the phone. I said, Tim, what's going on? Cuz I was, you know, I'm in the kitchen, and we're in the motorhome and I'm cooking up, whatever I'm cooking up. And I could overhear the conversation because it's not a very large space anyway. And I'm nosy. I admit it. So I said, What's, what's going on? He says, I've been diagnosed with type two diabetes. And I thought, No, you don't have type two diabetes. I said, That's impossible. Right? I said, I doubt very seriously, it's type two, they're Miss diagnosing you. Well, they put me on and so they put me in the hospital in Germany is at the base, but we inositol they gave me insulin to bring my blood sugar down. And now they've got me on Metformin. And I don't feel right. Right. He's an athlete. Yeah. You know, he was in the army. And now he's, you know, a contractor with the Department of Defense, or it's just a gang of people that we know, we hung out with. And he, I said to him, I said, Make an appointment with an endocrinologist and ask them to do a C peptide serum on you. By the way, please, please. He says, What is that called? So he said, Denise, write this down. She's got his What? So there's this four way conversation going on? c peptide serum will determine what is actually going on with you. And the next day, I get a phone call. He says yeah, I have type one diabetes. With in 30 days, both daughters were diagnosed with Type One Diabetes. Very active young family. The youngest one was first and then the and I was shocked. So I'm on this flight, and I'm coming back. I think I was going coming back from being somewhere. It's hard to see done a lot of travel. And I ended up having a conversation with a service member. And we just engage in Type One Diabetes conversation. He says yeah, he says we're finding out because I'm I've known several people that have been given 100% disability while in the military when they become type one diabetic, right? Because they're not accepting the responsibility of it. But suspected that certain vaccines can wipe out the eyelids of linger hard, which make the insulin for your body.

Scott Benner 1:15:10
So you think these are vaccines that they're giving? The military members? Maybe? overseas and stuff like that?

Grace 1:15:18
Correct? Yeah, that's Yeah. And it's interesting, but there's also vaccines that we get as children that may be causing it.

Scott Benner 1:15:29
Yeah. And so the, I don't know, obviously, I don't know anything, but I wonder if it's the vaccine causing something or if it's the idea that you're getting vaccines that are causing your body to mount an immune response suddenly to something. And then a lot of doctors offices like to give multiple vaccines at the same time. And I wonder how much how taxing that is on your, your system, you know, to give it all these different, you know, things that it has to mount an immune response to? And if it doesn't take people who already have the markers for type one diabetes and throw them over the edge, it's it's all it's all very interesting. And

Grace 1:16:08
what are markers she that's something I'm unfamiliar with? What who already has these markers, and what are they? Yeah, never. So I've heard that use, but I don't know what that means. Yeah, yeah. There's,

Scott Benner 1:16:19
I'm gonna run out in my head. What people are laughing at me now, we've been on the show a number of times. It's a really common set of words, and I'm just flaking out on

Grace 1:16:34
what has to do with the intercom system. It's something that like, Yeah, well,

Scott Benner 1:16:38
so there's this there's this thing called trial net, right. And, and trial that can, you know, obviously, I'm not a doctor, but they they take a blood sample. And they can tell you, if you have certain markers that indicate that you're more likely to get type one diabetes, and I think there's five I think there's five of them. If I'm if I'm getting this right. And, you know, the more you have, I think it's, the more likely it is that you're going to get type one at some point. And then if you know, then it's up to whatever, like, you'll hear some people will, you know, I got inoculated for something. And then I got type one a little while later, or I got really sick. And then I got type one later, my daughter got coxsackie coxsackievirus. And then we noticed like a month or two later, she had, it seemed like she had it again. And coxsackie is not something that should return. So the possibility exists is that she never really got rid of it. Because when she got coxsackie, maybe her immune system just, you know, ran full steam at her pancreas instead of at the coxsackievirus. I have no idea. But I think I think obviously, Arden had genetic markers that made her more likely to have type one diabetes, and this coxsackie, you know, Firestorm kind of threw her over the edge? So I don't know. Like, I think the way you said it, it's like there's something in the vaccine that makes type one diabetes? I don't, I don't think that's the generally understood, like medical idea, I think the medical idea is, is that it your immune system mounts a response. And then you have these markers already. And it goes after, like you said, your pancreas instead of instead of the thing it's supposed to be taken care of. But again, that's a laypersons understanding of it at best. I'm not nearly an expert on it. But it's still fascinating, you know, that that can happen like that?

Grace 1:18:37
Yeah, you sound you sound proactively protective. In other words, that's really a compliment. It's supposed to be I'm heating up some hot water so that I can help get this food on board because my blood sugar is still not really great.

Scott Benner 1:18:59
We've been at this longer than I expected to be. So I'm, I'd like to like, let me let you go and see you can you can manage yourself and get yourself together. And and you don't have to be worried about me.

Grace 1:19:11
Oh, yeah. Well, I do appreciate your time and taking the time to you know, work with me and interview. I like the stimuli of the questions. I just, you know, what? The idea of the markers See that's new to me. And I although there's another word that is at both our tips of our tongues, we're not able to come up with at the moment, which is fine. It's just interesting to me, because how did you know a father and two daughters end up? Because obviously they had to have something in their system, but they had gotten these vaccines inoculations prior to going overseas.

Scott Benner 1:19:56
Yeah, no, I I really believe that could be the thing that That fast forward the whole thing you should check it out. It's trial net.org. They they explained very clearly there, what they do and what they're testing for and trying to

Grace 1:20:10
sound familiar. Yeah, I don't fit any of the, you know, there's plenty of drug testing trials out there. But when I read all the, you know, qualifications, can you be on this drug trial or this trial or that trial? You know, I don't fit the qualifications for some reason, you

Scott Benner 1:20:30
know, this is just this is like Risk Screening, monitoring and prevention studies like that, that kind of stuff. But yeah, no, check it out sometime. But I want you to take care of yourself first. So I appreciate you doing this. I appreciate you powering through a low blood sugar and letting everybody kind of see it happen. I think it was pretty fascinating. So but I'm gonna let you go so that you can see you can get yourself back to where you want to be.

Grace 1:20:54
I appreciate that. And well, I don't know if you'll actually produce this or not, but hey, everybody out there if I can live through it the way I've lived through it, you know, the dinosaur ages for type one diabetes have changed. Incredibly, over the years crazy.

Scott Benner 1:21:12
You think I'm not gonna let people hear this in your mind. You have to edit it to some extent. I'm not editing this. This was amazing. I you, you were 49 and taking care of yourself with gastroparesis while we were being recorded. I think it's fascinating.

Grace 1:21:30
I think I'm at 65 I'm doing is coming up slowly. It just it just takes a while for I was actually surprised. I didn't think that you know, I would drop again. Hold like that

Scott Benner 1:21:41
lower. Yeah. Okay. All right. Well, you go ahead, take care of yourself. And I will I will send you you one day you'll turn your podcast player on you'll be on there.

Grace 1:21:50
Oh, good happen. All right, Scott. Thank you. Have a good day. Thank you to

Scott Benner 1:22:05
a huge thank you to one of today's sponsors. Je Vogue glucagon, find out more about chivo hypo pen at G Vogue glucagon.com forward slash juicebox. you spell that GVOKEGL Uc ag o n.com. forward slash juice box. I'd also like to thank the Dexcom g six continuous glucose monitor, find out more and get started@dexcom.com forward slash juice box and of course, a huge thank you to grace for sharing this very personal look into her life with Type One Diabetes.

If you'd like to interact with other listeners, you can do that at the Juicebox Podcast private facebook page now up to 12,000 members. It's completely free. Just come on in Juicebox Podcast type one diabetes, there's a couple of quick questions to answer to make sure you're a real person. And then after that, you'll be chatting with other listeners just like you Juicebox Podcast, Type One Diabetes on Facebook, you can actually find the show also on Instagram at Juicebox Podcast. And if you'd like to support the show that is completely simple and easy for you to do. Just leave a great review wherever you listen. Share the show with someone who you think will enjoy it. And subscribe. Wherever you listen hit subscribe or follow in your podcast player. It's a huge, huge difference maker for the podcast. Thanks so much. I'll talk to you soon.

#490 More Julia

Julia is back!

Dr. Julia Blanchette, PhD, T1D

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:10
Hello, friends and welcome to Episode 490 of the Juicebox Podcast today a returning guest, Julia, Julian, I always have big plans about talking about a certain subject, then we have these lovely conversations. And I don't know if we ever get to the subject or not. But Julie's got Type One Diabetes forever. She's actually got a long list of what they might call the bone a few days. You'll hear in a second. And anyway, she's cool. And this is a great conversation. I probably should have said Julius back. I like Julia, we have a great time talking. Here it is. That is what I should have said. There's too much talking in the beginning. All right.

Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. We're becoming bold with insulin.

This episode of The Juicebox Podcast is sponsored by Omni pod makers of the Omni pod tubeless insulin pump. It is also sponsored by touched by type one checkout touched by type one at touched by type one.org or on Facebook, and Instagram. And while we're at it, I'd like to remind you about the Contour Next One blood glucose meter. It is my favorite meter, the bestest one I've ever held and used, it is super accurate. You'll love it. Contour Next one.com forward slash juice box.

Julia Blanchette, PhD 2:01
I am a Diabetes Care and Education Specialist registered nurse. And I have my doctor philosophy or PhD in nursing science. All right.

Scott Benner 2:13
And you've had hype on For how long?

Julia Blanchette, PhD 2:15
And I've lived with type one actually, for 21 years. I just reached my anniversary last week. You

Scott Benner 2:22
know, well, first of all, congratulations. And secondly, you know you can pass me because you look younger than you are even though you're not old.

Julia Blanchette, PhD 2:30
Yeah, I mean, everyone's always said I've looked younger than I am. So it My mom has good genes. You know,

Scott Benner 2:36
you're in your early 30s, right? No, no, wait a minute. How old are you?

Julia Blanchette, PhD 2:43
I'm in my late 20s. Oh,

Scott Benner 2:46
I like how you made that distinction. Like I'm getting old. So Scott, I'm 31. I'm 29. It's a huge difference when you really think about

Julia Blanchette, PhD 2:58
I'm actually 28. So,

Scott Benner 3:00
okay, so well, then that begs the question. How are you so accomplished at 28?

Julia Blanchette, PhD 3:09
Yeah, so I think a lot of it goes back to my personal story and my own experiences living with Type One Diabetes. And when I was diagnosed, we didn't know anyone with diabetes. And you know, at the time, there wasn't a lot of social support on the internet, because it wasn't really a thing yet. I don't even think Google existed when I was diagnosed. So we actually met a lot of local families who we are still in touch with. And we had a great support system, through kind of the families that we knew from town and then also just from our family, friends and from my friends, and they really lifted me up and I saw the power of community come together. That being said, I didn't have a very traumatic diagnosis. I wasn't very sick. Obviously, my parents thought I was very sick because they didn't have a child with a chronic condition before that, but I wasn't NDK when I went to the hospital is more just to learn how to manage diabetes than to treat me for something really critical. So and then coming out of that I was kind of put into a situation with a great support network. And then from there, I you know, my parents were really supportive in a way that worked on they really encouraged independence, but they weren't pushy about it. And I think I kind of just took everything on myself as I was ready. Don't feel like your child has to do this. I think that part of that is innately who I am. I think I'm a pretty like I want to do things I I get really interested and passionate about things and want to learn how to do them and learn how to help other people and so that kind of led me to my career. career path. So, when I applied to college, I, I didn't know if I wanted to be a nurse because I wasn't thinking I wanted to be a bedside nurse, I really wanted to be a Diabetes Care and Education Specialist like the nurse practitioner that took great care of me and really empowered me to not let diabetes get in my way. And it's really live a normal childhood that my mom and dad provided me. So when I applied to college, I kind of I knew I wanted to go into healthcare, but I wasn't so sure I wanted to go into nursing at first because I knew I didn't want to be a typical bedside nurse. And I knew I'd had to have to go through all that training. And then I knew that the path to becoming diabetes current education specialist wasn't going to be really direct. Like, I know, I may have to take on other jobs in order to get there, you know, turns out Oh, sorry,

Scott Benner 5:56
no, no, let me say that I think it's interesting that we, how we sort of sometimes judge people, right, like this idea, like, this one's not trying hard enough, or that one doesn't want it enough, instead of just saying, some people just aren't wired that way. Right. Like, as you're talking, you wouldn't even know this about your I mean, maybe you'd know it about yourself, but I don't think you'd recognize it, as you heard yourself explaining your life. But you're obviously going to just be kind of balls to the wall, no matter what you do. And that you were, you know, kind of lit up by somebody who helped you at one point and made a decision to go in that direction to help other people. That's, that's amazing. But what I'm saying is, I think that if you if you would have been 12 years old, and gone to the library and been like, this is the most magical place, you'd be the most accomplished librarian in your town right now. Like, like, I don't mean, like you, you have that thing. And, and while that's laudable, and amazing, and the world needs you. I think that if your kid is somebody who gets up in the mornings, like, I want to draw pictures and walk around outside and look at the sky, you can't look at them and say, I wish they were more like this person. I think they're just who they are. And the reason I bring that up, is because I think that that translates into how people manage their type one. And I've been around people long enough just on the periphery, to see that I don't think there are motivated people who really care about their health and unmotivated people who don't care about their health, I think they're just different ways people's brains work. And that applies to everything, even when it's something as serious as diabetes, but I think

Julia Blanchette, PhD 7:38
you nailed it. No, you totally nailed it. I think, like even thinking about the difference between me and my brother, like, he's kind of he's artsy. He's, he's a jazz musician. And I think growing up, like I was very driven with academics. And, you know, you might call me type A, and I think he, you know, he was very not, and I think, if he were diagnosed with diabetes, and neatly, his management style will be a lot different than mine. And that's okay.

Scott Benner 8:07
No, no. And I think it's funny, too, when we hear type A, I think it probably lights up to different parts of people's brains, either you hear typing, you think, Oh, that's a person who's going to be successful at what they do. Or you hear type A and think, Oh, well, there's a crazy person who's going to go to extremes and ruin their lives focusing on minutiae.

Julia Blanchette, PhD 8:26
I'm a Type A not to be typing.

Scott Benner 8:31
I know like you hear people say sometimes, and it always comes off wrong, but I don't think we hear it correctly. I'm glad child a got diabetes and not child B, because child B wouldn't have handled it. Well. I think that's taken wrong. Nobody's nobody's wishing diabetes on child a in this scenario. They're just saying, for as hard as this is, and as well or not. Well, as this is going right now, if the other one got it, it would have gone worse, because they know their personality.

Julia Blanchette, PhD 9:03
Yeah, but I think if you look at it from a different angle, it could have gone differently, right? So someone like my brother, he's not super Taipei, so maybe it wouldn't have impacted his life in the same way. It impacts me, but maybe he would have found other ways to manage like, you know, he uses music as an avenue to kind of keep himself mentally healthy. And so I just think everyone's different. But I'm glad you brought this up. Because this is so my first summer working as a nurse a diabetes camp was what I realized that not everyone had the same diabetes experiences me and when I really my eyes were really open to see that everyone had a different self management style, and different support resources. And that's actually what drove me to apply to do my PhD was when I saw all those differences. And I saw that my experience was so different and that I realized that I Wanting to dedicate my life to this and learn about how to help other people who had greater barriers than me.

Scott Benner 10:08
And I have to tell you that I'm very focused on this to sort of behind the scenes because and he doesn't come up very frequently on the show, but my friend Mike is passed now. And he was diagnosed with type one when we were like 19, or 18, somewhere in there. And he was just a voracious passionate reader. He liked photography, art, you know, he wanted to see cinema, he wasn't, he didn't care about making a lot of money. He wasn't looking to dominate a business, he wasn't trying to be a millionaire. He wanted to get up in the morning, enjoy other people's artistic endeavors. And, and, you know, try to add to them himself. But mainly, he was happy to take in other stuff because he wasn't a voracious reader, like today, I'm going to learn about how, you know, a fulcrum works. He's he wasn't going to read a 300 page book on, you know, engineering, he was reading for pleasure, he was reading for escape, you know, and this was him Well, before. Well, before diabetes, he was always a kid talking about comic books back when nobody talked about comic books. And and he was just a good guy. He was bright, and he was articulate and caring. And when he got diabetes, it wasn't something that he was going to be able to pick apart on the level that I picked it apart, for example, but it doesn't mean that he should have had to pass before he was 50. You know, and I understand that when Mike was diagnosed, it was, you know, regular and mph, and you know, he didn't have a meter and nothing was the same as it is now. But still, I don't know that physicians don't sometimes look at people and go, Oh, well, they're just not going to do as good of a job. And I guess that's what that is. And and I don't think that has to be the case, necessarily.

Julia Blanchette, PhD 11:58
Yeah, I mean, I try to I mean, I don't try. What I do actually is I don't, I don't really look at someone's going to do worse than someone else. Like, I really try my very best to make sure that everyone has adequate resources, and they're given a chance. And I think a lot of times you kind of have to meet people where they are, which may be at a different place. And you really have to consider their life and their factors and figure out how to best support them. And I think Not everyone gets that.

Scott Benner 12:27
No, I agree with you. It's a it's an overused phrase, meet someone where they are, but its intention is, you know, is just as good as saying, you know, when you know, I hate it when people say I think outside of the box. I'm like, if you did you wouldn't say that, but I hear what you're getting it. But no, but I mean, I don't know how else to No, no, no, I agree with you. Yeah, yeah, like meeting someone where they are just means you know, you don't you don't approach a you don't approach a five year old and try to explain calculus to them, you start with what they can take in and, and it's hard to think about people that way during a medical situation, but some people are going to walk into a doctor's office and not have either the capacity, the desire the drive, or maybe even the knowledge of how important it is to apply to when somebody says you Hey, I see you're spiking every morning, tell me what you're eating for breakfast, and you're having three things that compete with insulin, all in different ways. You know, you're having a cereal bar, which is going to hit for forever and hard. And then you're mixing in some sort of like fruit juice, which is going to hit you really fast and spike you up at something and you've now mixed in every difficult food into one thing. And your blood sugar jumps up to 200 it stays there for a while it comes crashing back down. You stop it with some juice, you overcorrected, it goes back up. How many times do I have to tell you, you can eat that for breakfast? Or you have to thoughtfully figure out how to put the insulin in? And how many times do I watch you not do it or not be able to accomplish it before as a practitioner, I think well, I guess this person's just going to do this in the morning. And they're not, they're not motivated to change.

Julia Blanchette, PhD 14:12
And that's where I come in as I show them the data and kind of help them figure out okay, if you really like this cereal, how can we eat it? In a way that won't spike you as much?

Scott Benner 14:23
Yeah, well, but you know, the problem is, and this is off track already, all of our conversations are gonna end up being but um, but I can Bolus for those things. I'm sure other people can too. But there's so many considerations along the line, you have to have a real confident understanding of the insulin so that you're not afraid of it and all this other stuff has to happen. And then then then the X Factor is of course they don't eat it in front of you. So they're doing things that are impacting the outcome that they don't know are impacting the outcome that you can't see because Cuz you're not with them?

Julia Blanchette, PhD 15:02
Yeah, yeah, it's, it's tricky. And I think, with a lot of providers, like, if you don't have time to actually help the person with diabetes, think about all the factors, it's really hard for them to then understand how to make changes. I've helped

Scott Benner 15:17
to separate people in the last 10 days. One of them listened. Wow, one of them is listening, sort of, and you can see it on their graphs. And I don't know how to tell the second person, if you would just stop thinking for five minutes and just listen, this would be okay, you'd see it be okay. And then you'd learn how to mimic it. But they're, they fight against it. It's, um, and I don't mean to fight in like a adversarial way. I mean, that I again, I think they're doing something they don't realize they're doing, it's having a big impact. And because I can't be with them, I don't know how to, I don't know how to stop them. You know, long enough, you know, how like, sometimes when, like, a kid freaks out, sometimes you have to just go like, Alright, everybody stop. Everybody stop. We're gonna start over again. I feel like people's management is like that sometimes. Like, it's like a kid that's out of control. I was gonna say tantruming. But I don't mean it like that. I mean, just like there's craziness and yelling and arms flailing and, and, and sometimes you just got to stop, you know, you have to stop and start over and try to see the bigger picture. I don't know. Well, alright. Julia, I don't know how that happened. You know, I got interested in something that you said. And then I was like, Oh, well, that's got nothing to do with why she's on. But that's interesting. We're gonna talk about two simple things today, I think that are very difficult, but simple questions. And they're questions from the Facebook group, the private Facebook group. A first one is, how do I manage a kid with type one, so they don't also suffer from depression, anxiety, eating disorders, stuff like that? And what do I do if these things happen anyway? So how do you talk to people about those issues? And can be avoided?

Julia Blanchette, PhD 17:09
Yeah, so this is definitely a long conversation, it's not going to be a boom, boom, boom, answer. Um, yeah. So that, you know, people with diabetes, children, adolescents, young adults, adults have a higher risk than the general population of anxiety and depression. And then those eating disorders typically emerge during the adolescent young adult years, which were also at higher risk for. So why do we have such a high risk? So you know, a lot of living with a chronic condition and the extra stressors, definitely contribute to an increase in risk for those mental health comorbidities. But if you go to the roots of it, so you know, there's some people and we were kind of talking about this before that are innately more prone to anxiety. So that's kind of in its own bucket, right. And so, example, like, I'm innately more prone to anxiety, like I have anxiety at baseline. That being said, the anxiety I have isn't particularly related to diabetes, it's related to other things. So somehow, I somehow it doesn't relate to diabetes for me. Um, but I am ready. Right? Isn't that crazy?

Scott Benner 18:23
Is it a driver in your type A personality?

Julia Blanchette, PhD 18:26
Yeah, I'm innately more prone to that anxiety. And I think so what I was about to go into, though, is I think a lot of it has to do with your diagnosis story, right? So I didn't have a traumatic experience. And then I was surrounded by a great level of support and encouragement. And people that lifted me up and helped me feel normal and gave me a sense of normalcy. And my providers increased my self efficacy and self management skills and confidence. And all of those factors are protective against anxiety and depression related to diabetes in a young child, right. So I had resources I had support at the time, my family functioning, was, was high and we were banded together, changed later down the road. But, you know, family functioning in itself contributes to the risk of anxiety and depression in kids with diabetes. And, you know, I really just had that stable support system. And I didn't have a traumatic diagnosis. Now had I had a traumatic diagnosis, the best thing would have been to go right to get psychological help. And I think a lot of the pediatric diabetes clinics as part of their standard care do have the family meet with a pediatric psychologist at diagnosis, and I think that's good practice because, you know, like a kid adjusting to a new diagnosis and changing what's normal can induce a lot of anxiety. So I think that's something that everyone should do if you have the chance to do it. Now that being said, I think anything that's new and different, can definitely lead to those feelings of anxiety and depression. Right. But depression, I think comes with our from the burden. And the burnout related to diabetes. Sometimes it'll happen at diagnosis. But that's usually more for like young adults and adults, it could happen with kids too. But I think with kids, we see more of the depression happening and like the adolescent, young adult years related to just the burden of diabetes, and being different, and having to deal with this and having those blood sugar swings that can also contribute to feelings of depression. And so I think that answered part of it, I have a few factors. One, I

Scott Benner 20:51
want to ask a question. So yes, do you see outcomes? Driving burnout? Like, do people who have amazing, are there two different ways to burn out? I guess, is my question. So let's say that, like someone has the outcome they want more often than not, right? Whatever it is, they're they're aiming for. And does that person get tired of diabetes less than a person who has crazy variability that feels uncontrollable, and everything feels like it's not within their power to affect.

Julia Blanchette, PhD 21:29
So Person B is going to be more prone to getting burnt out. But Person A can definitely get burnt out too.

Scott Benner 21:35
So when you lay right, in focus why,

Julia Blanchette, PhD 21:39
yeah, like, if you don't know how to how to manage your diabetes, and you don't have resources, and you feel like everything's out of your control, that's out of control feeling is going to lead to burnout. But then sometimes you can get, you know, tired and just emotionally at your capacity when you are really intensively doing something like the other type of person that you describe. So it can go either way. But doubly the person that doesn't have the tools, or understanding will have probably have a greater chance.

Scott Benner 22:15
I just wrote a note for myself, because I just found myself thinking that I want to talk to Jenny too, about what it feels like for her when she burns out. Because I if she does, because she appears to be the kind of person who's just got a good disposition. I don't even know how I mean that exactly. But I don't think Jenny gets down for long. But I'm wondering if I'm wrong. And I want to and now I want to find out because if she experiences that, then everybody's going to because she is amazing. At her outcomes. She's She's not burdened by her meal choices, like she's not getting up every day going, Oh, I can't believe I have to eat this. Like she's happy the way she eats. And she understands how to use her insulin. So I obviously I mean, you've listened to the podcast for a while. Yeah, I believe that if you understand how to use insulin, you'll have more frequent stable outcomes. And that'll make things easier for you. I wonder if I don't not think about it as burnout. Because I don't have diabetes, I think about it as aggravation. Like, well,

Julia Blanchette, PhD 23:20
so if you're if you're someone like me, or Jenny, I'm gonna grip myself with Jenny because I, I find that I'm exactly what you just described, like, I'm happy with what I eat. You know, there are times when I get frustrated, like if my blood sugar's higher than usual, and that come down like, yeah, that's frustrating. Yeah, um, but for the most part, I knock on wood, I've never gone through a period of burnout with diabetes. And I think a lot of it is because I, I do understand, and I'm not hurt on my sleeve, even on you know, we have a bay, but I'm not hard on myself with diabetes, because you can control what you can control. And you do your best, and you understand what you understand. And you try to minimize the fluctuations and patterns, and that's your best. And so to me, I don't get frustrated when things go slightly wrong, because they're going to go slightly wrong sometimes, right? If I have a bad site, for example, or if I miss count carbs, and that to me, that's, that is what it is. We're not perfect. But I do think the people that seem to get burnt out, are also people that I find a lot of times they're putting in way more effort than they have to be because something else can be changed.

Scott Benner 24:34
Okay. I okay. So they're working hard. It's like they're beating their head against the wall. They're trying Yeah, the wrong things. They don't realize that they think they're the right so that's my other thing, but you were talking about like getting frustrated about at a high blood sugar. And even that can be dependent on your level of, I think knowledge and skill around using insulin because if a blood sugar appears to just magically get high. That's one frustration, right? That's a frustration that there's magic happening that I'm unaware of and don't know how to control and it's causing this blood sugar.

Julia Blanchette, PhD 25:12
Now, I don't believe in magic. Right,

Scott Benner 25:13
right. I don't either. But I think that's how people feel about it. Let's the diabetes, Carrie has decided your blood sugar is going to be high, right? But instead, that's not why like you. Listen, I'll say it here. And I mean it, I'll defend it anywhere. If your blood sugar is too high or too low, you're using insulin wrong. That's it. And so it there's no more or less to it than that. Yeah. How do you how to use it correctly? There's a lot to but at it's good.

Julia Blanchette, PhD 25:39
I think what I was trying to get at is even like someone like me, and I bet Jenny will admit to this too. Like, I'm not 100% enraged with a flatline all the time, I'm close, but I'm not, you know, I have there are things that I do that I want to do. That'll vary my blood sugar a little bit sometimes. And I just, I don't get frustrated with it, because it is what it is. Does that make sense?

Scott Benner 26:01
Oh, no, it doesn't mean it. 100%. And I agree with you. I don't. I know there are people who feel like it's it that they want to keep their blood sugar at 83 for their whole life. And there are ways to eat the keep it that way. Like you can I'm

Julia Blanchette, PhD 26:14
not that person. Like I understand the science behind it, you know that? You know, there might be people that listen to this that have a different viewpoint. And I understand that. But from my standpoint, there's no point in me trying to lower my agency, like I'm already at a level where I feel is low enough. And that I don't put in a huge amount of effort to get here. And so I'm like, why would I put in more effort to get lower when the data is showing that I'm not, you know, I'm not varying. And my risk of complications with this agency is a one C and really time and range, right? And my variability is quite minimized. So why would I try to make it flatter? Yeah, kind of how I feel. Oh, yeah,

Scott Benner 26:55
I'll give you an example. I just have to open up this app. So Arden's blood sugar right now is 120. It's been addressed, okay, like it's it's we've dr address the 120 with the same you know, veracity that somebody might address a 300 I'm like I have that I'm going to make that 85 again, but looking at Ardennes I have Arden's last seven days here, estimated a one c 5.4. Standard Deviation 30 codo coefficient of variance 28. And an average blood sugar of 107 Arden's a one C has been in the mid fives for years, it's been between five, two and six, two for like seven years now. And right now she's in class. You know, she's in her bedroom in front of a laptop, but still, she's in class. And something clearly happened that made her blood sugar go up a little bit. And I'm not going to over Bolus a 120 and cause her to have to have carbs a half an hour from now. So that the 120 only exists for a half an hour instead of an hour. Do you know what I mean? Like I just that seems okay to me, like I've seen my own blood sugar, and 120 happens. You know? So I think that in the pursuit of stopping a 300 there's this anxiety that comes as soon as you see the blood sugar going up. It's gone to 300 so many times, you're just like, oh my god. Oh my god. Oh my god. If it ever goes up, it's definitely gonna go to 300 but we don't live in that space. Arden's insulin is set up in such a specific way that it's nearly impossible for her blood sugar to go to 300 unless something radical happens like our pump gets knocked off or like something like that.

Julia Blanchette, PhD 28:46
But you know what? I've even noticed when my flight gets delayed when I was actually I can't hear

Unknown Speaker 28:54
you hear me now? Try again.

Scott Benner 28:55
You even noticed when your sight Do you hear me? No, no, you're really low. Hold on. That could be me. It is me. It's not you.

Unknown Speaker 29:04
Hear me now? Give me one second. There's a setting in here that I have to why does it want to do that?

Unknown Speaker 29:13
That is unpleasant.

Scott Benner 29:18
Hold on one silly Second. Okay. All right, got you even

Hey, check out touched by type one.org. They're a great organization doing absolutely astonishing things for people living with Type One Diabetes. They're a touched by type one.org. You can also find them on Instagram, and Facebook should check them out. They're not asking you to do anything but check them out. It's a super simple ask you're on the internet all the time anyway. I mean, how many times can you find out what Prince Harry's new baby's name is just touched by type one battle?

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Unknown Speaker 33:20
Alright, God testing

Scott Benner 33:22
you there. You even you even notice when your site

Julia Blanchette, PhD 33:26
like when my site is bad right now, I will go up to like, I'll start I'll start seeing myself creep up like, you know, above 180. And I know something's wrong. And I'm at the point where if I get into the mid to hundreds I feel disgusting. Like disgusting. Yeah, from a bad site like and it ruins my day. So that that is a point of burnout for me like I had a period a few weeks ago where I had a bad box of infusion sets. And it was kind of dramatic, because you know, I, you know, I train on all the pumps and everything. And I have resources. And I was I tried a couple different boxes. And that was a little frustrating. But even that, like I'm more felt frustrated because I didn't feel well opposed to feeling super burnt out.

Scott Benner 34:07
Well, that is something I didn't bring up that I meant to a little while ago because you alluded to it, you know, when your blood sugar goes up and you're aggravated. You do have to see if you're an aggravated caregiver or an aggravated person with Type One Diabetes. You both have different stressors and aggravated caregivers worried they're hurting. They're the person they're caring for. The person who has diabetes is going to feel unwell because their blood sugar is high, which could lead to aggravation and does.

Julia Blanchette, PhD 34:35
Yeah, and I think it's so important for caregivers and I'm not a caregiver, right. So this is just speaking as someone with diabetes who works with caregivers and people with diabetes, but I think my mom is not an angry person and was always supportive and compassionate. When my blood sugars were going up and down throughout the years. You know when we had the type of people That didn't even have self adhesive on the infusion site or a Bolus calculator, but that's a different story. But yeah, so even when we had like that type of technology, and I had technology failures, my mom was just sweet and compassionate and supportive. And I think that really helped me. And I think when I'm working with people with diabetes, they don't want someone who's going to yell at them. There's so much shame people come in so afraid and embarrassed to look at their data with me. Yeah. And that's not how it shouldn't be people need support. So I Well,

Scott Benner 35:39
two things. First of all, the next time you speak to your mom, you find out for me, and I'll ask you next time, did she smile to your face? And then run into another room and yell into a pillow? or was she just like that the whole time that I want to know. And

Julia Blanchette, PhD 35:54
she's like, not the whole time, I can verify she's not an angry person. Just it's just weird. It's weird. She's a neatly like this magically, not angry, not anxious person, and I don't understand. Um, so that's who she is. She had tips for coping mechanisms, but I don't think she does. I just think innately she was like, this is how it is. And we're gonna do this. But I mean, I think in a way to she had good support. So maybe that's what helped her through it. I don't know.

Scott Benner 36:23
You don't think she was like in the laundry room? She turned three sneakers in the dryer, turn it on, just yell fuck for 20 minutes. And then No,

Julia Blanchette, PhD 36:29
she hasn't swear. I swear, my mom does not she's like, every time I swear in front of her. She's like, I don't know where you came from?

Scott Benner 36:39
Oh, yeah, I guess so she's all sad. And you're like, all wound tight. She probably like what happened? Okay. Okay, so we, again, this is gonna be a meandering conversation, because I don't have the real ability to do anything otherwise. But so. So support is what you're saying. It's I mean, I feel like what you're telling me is that if you're well supported, you're not the kind of person that flips out and causes more anxiety than needs to be and you understand how to use insulin. These are the measures you take to try to avoid the things that we mentioned.

Julia Blanchette, PhD 37:13
Yeah, and I think when we're talking about support, it supports only so helpful when you don't have the knowledge base and self confidence and understanding and self management. So the two are very important together. But you know, also, there's other factors too, like resources. Just think about when I was diagnosed, I went to Yale New Haven Hospital and had a great pediatric endo team, they gave us all the resources, we needed, all of the knowledge that they had to share with us. If you're in a more rural area, or don't have that amazing diabetes team like that, in itself, can change your diagnosis story and what you're thinking and can impact you. I partly

Scott Benner 38:01
love how the podcast works because of geography and how some people just don't have access to the same things that others do. But I am also thinking that maybe, like, when you when you say you need good support, that probably can seem like pre defeated to people, because what does that mean? Like, you know, if I don't know how to do diabetes, I think people might be thinking that support means that someone else will tell you how to do it, which obviously, you need, but I mean, but I think

Julia Blanchette, PhD 38:33
knowledge, right? I think the other person is more of the knowledge base. I'm talking about, like we didn't know anyone with diabetes. And I can tell you, we had any, you know, this is pre COVID times and everything. I had people coming into the hospital, my friends all showed up at the hospital. We danced around at hospital socks. I had, you know, I we painted our nails, we did puzzles, we read books, like this is what I remember that being in the hospital. I don't remember being scared and sick.

Scott Benner 39:01
Yeah, maybe. That's what I meant is that real support is sort of not as much support as it is the lack of stress. Yes. Like you can support somebody by not adding to their burden.

Julia Blanchette, PhD 39:15
Exactly. And you just need people that you can lean on, right. So part of what made my childhood so normal is that we had people that supported us, and really came together to help our family. But they you know, they also like I went to sleep overs. And yeah, probably that was probably something that made my mom really anxious. But we had multiple family friends that were willing to have me over for sleepovers like that is the type of support that made my childhood normal. That, you know, my mom knew that these people were also willing to help care for me. And they just did what my mom said right? So they didn't necessarily have the knowledge. It wasn't necessarily knowledge. It was just having community support people to lean on people to help us make the situation normal. Yeah. And not everyone has that. But I think what I'm trying to get at is, if you have people you can lean on that in itself can reduce the risk of anxiety and depression.

Scott Benner 40:20
Now, I, Kelly sister would have Arden overnight, and she really just didn't know what she was doing really, but she just took good direction. She's like, so I'll tell her here. Um, well, she was willing to be up at three o'clock in the morning to double check things like she just she was she she was willing to create a place for art and to feel like not accepted but not excluded, I think is the Yeah, right. Cuz she was obviously accepted there. It's when the exclusion comes in. Well, I don't want to get up at three in the morning to check your kids blood sugar, so they can't stay while everybody else stays. It's not exciting people. Yeah, excuse me.

Julia Blanchette, PhD 41:02
And the other thing that really helped me to feeling a sense of normalcy was actually going to diabetes camp. So I think before I went to camp, I did not care to show anyone my insulin pump, I kind of, you know, I felt different, even though I had a great support system. And my friends were very nice about it. And, you know, very supportive about me wearing an insulin pump. I just, I didn't really want to show people I didn't know I kind of covered it up. And so going to diabetes camp also gave me another sense of normalcy and support. I'm like, wow, I'm not in this alone. There's all these other kids like me. So

Scott Benner 41:39
I see Instagram do that for people. Yeah, their ability to just show their pomp or put in their bio. I have diabetes. Like I think that's another form of not hiding.

Julia Blanchette, PhD 41:49
Yeah, no Instagram, though. Did you say Instagram you got cut off?

Scott Benner 41:53
I did. Yeah, I just mean a place a place where someone can go out into the world, whether anybody sees it or not, and say, Look, my CGM is on my arm. It's okay. Like, this is a normal picture of me and my friend. And I'm not hiding this thing. It's not that they're not hiding it is that they're, they're expressing that it exists. And and I don't know, like, I also see the value for some people not telling anybody I understand when adults tell me they don't want their Boston or they have diabetes, I get that. Well, that's a different, but that's a different stressor. Yeah,

Julia Blanchette, PhD 42:25
yeah, that's a different totally different situation. It's you don't want to be judged or treated differently, or, you know, not given the same opportunities in the workplace because of it, right?

Scott Benner 42:36
That it's different than just saying, hey, world, look, I have a insulin pump on like, that's not the same thing. But still, they I get we're going to diabetes camp is just fine. You're in a place where literally nobody can hide that they have diabetes, you need to have it to get in. So

Julia Blanchette, PhD 42:56
yeah, yeah, exactly.

Scott Benner 42:59
We don't like kids come here, don't have diabetes, we all have it. And then that, that's just one consideration that's gone. I ever everyone knows, and, and maybe everyone's experience isn't the same, but at least there's, we have a baseline that we all share, I guess

Julia Blanchette, PhD 43:16
I actually think diabetes camp opened my eyes to so many things. So I need friends from all different backgrounds like camp, and that to this day has really shaped who I am. So just a little shout out to diabetes camp camps, in general, really teach kids a lot of skills that you don't get otherwise. So I benefited from camp in general. Um, you know, from my own development standpoint, but also, I grew as a person with diabetes, when I first met more people my age with diabetes

Scott Benner 43:50
camps a funny thing, because I think people have one of two very distinct and different reactions to it, either, it seems exactly the way it seems to you or other who were like, Oh, I am not doing that. And I don't, I would never want to do that. Like I just it's, I think there's there that falls into two basic factions, like you're either this is a great idea, or Oh my God, I cannot think of anything worse than going to a place with a bunch of people I don't know, and sleeping in a cabin with them for two weeks. I

Julia Blanchette, PhD 44:17
was really scared. I was really scared. I actually used to not be an outgoing person at all. And it did freak me out. not lying. Um, but I think it made me more comfortable and kind of helped me connect with people in a different way. And it took me out of my comfort zone and I think that's what helped me grow. Yeah,

Scott Benner 44:39
no, I listen, I'm not saying there's a right or wrong. I'm just saying I think there's a reaction to the I don't even mean diabetes camp. By the way. There are people like you. Oh, yeah.

Julia Blanchette, PhD 44:46
All sleepaway camps. Yeah.

Scott Benner 44:48
If you told me when I was 15, that I would expand myself by going to a summer camp. I would go. I'm not doing that. And that would be the end of it right there. I don't there's nothing about that. that strikes me as a good idea. And I'm not discounting how amazing it is for other people at all. I'm just saying that for me personally, it doesn't. It doesn't make any sense. Okay, so I guess I guess I'd like to know, too, and it feels like it fits in here a little bit. How do I recognize the eating disorder as it's approaching?

Julia Blanchette, PhD 45:24
Yeah, so I actually didn't even have a chance to go into like, the risks for eating disorders and diabetes are a little bit different than anxiety and depression. Why I didn't do much, or Yeah, yeah, I have, yeah, I have some time. Um, I don't really have time, but I have time for you. So. Um, so with eating disorders, you know, someone who is more prone to anxiety innately is at a slightly higher chance of an eating disorder. And then any trauma, like a traumatic diagnosis, or any type of like family trauma, or any type of trauma can also contribute to all of those mental health disorders, and increase the risk for an eating disorder. But with diabetes, eating disorders are actually more prevalent than in the general population, because part of diabetes is this focus, there's two things one is the focus on managing your blood sugar's and trying to keep them in range, when, you know, it's not super easy for everyone to do that not everyone's given all those tools, right. And especially for someone who really wants to control everything, like that lack of control is what really can contribute to the development of an eating disorder. So I think, you know, this will prevent all eating disorders, but if you give your kids just the ability to feel like they're in control some way of their life or their diabetes, I think that may, um, you know, help prevent eating disorders slightly. But that being said, if somebody is really fixated on trying to control their blood, sugar's you know, in a certain range, and perfect it and they can't, that can contribute to controlling weight, controlling something, which would be what you eat, or what you put into your body. And the other thing with diabetes, that contributes to a high risk of eating disorder, higher risk of eating disorders, is just the fixation on everything we're putting in our bodies, right? So the fixation on all of these foods and how they impact our bodies in the carbohydrate content and counting, everything like that can also contribute to a higher risk of eating disorders. And I left out to just the, the feelings that you're not normal and discomfort with your own body because of diabetes is also something that contributes. So there's all those factors, in addition to all of the other psychological barriers and factors that can increase the risk of psychological distress and mental health diagnoses and people with diabetes. So with eating disorders, that's kind of what contributes to them. But the signs and diabetes, you know, are unique, because we have more data to look at. So, in particular, one of the biggest telltale signs is frequent decay episodes, consistent high blood sugars, omission, or not giving insulin, particularly at meals, eating carbs, I'm covered. I mean, some teams are gonna eat carbs, I'm covered, but it's more of like a behavior where you physically can't get yourself to give insulin to cover the carbs because you are trying to keep your blood sugar's higher. So some of those are kind of more in line with diabetes aimia. But, you know, there are people with type one that also have anorexia and so with that, you might see more low blood sugars and those lows might not come up the same way that they would in somebody with glycogen stores. So anorexia, I mean, not to like freak anyone out, but anorexia can be very dangerous too. with diabetes in addition to Dibley, Mia and I think we focus more on diabetes, Lamia, but anorexia is out there too. And the lows

Scott Benner 49:19
are you saying because with the lack of any kind of food in your body or the the the regurgitation of the food, your body doesn't have the ability to store glycogen either. So when you get low, the your liver can even help stabilize your blood sugar. Is that what you're saying? Yeah. Oh, that's frightening.

Julia Blanchette, PhD 49:39
That's great. So yeah, so PSA, if you know anyone who has diabetes and anorexia, if they do go very low, glucagon may not work. So that would be a situation where you have to give dextrose or glucose IV dextrose. If they're unconscious, I was fortunate.

Scott Benner 49:58
I saw someone give Luke had gone on, like they were talking about their low blood sugar incident. And they use glucagon a number of times. And I was like, I don't think they understand how this works. Because they put it in, you put it in once, and your body releases the stored, you know, glucagon. But you're putting in more doesn't it? You're the stuff in the needle isn't the stuff that makes your blood sugar come up this stuff in the needle is the stuff that releases the glucans. And, and that stuff I know, I'm not speaking Technically, the point is using three glucagon is it's no different than using one glucagon. But, yes, I watched this person make that mistake. And this was not a new person to diabetes, which made me want to bring it up somewhere because it did not, it seemed like something they should not have not understood.

Julia Blanchette, PhD 50:46
So sometimes we recommend to give a second dose. But that's like if you have a lot of insulin in the system and need a greater release of stores. Right. But if it's not working, it's not working. Because there's not you don't have the stores. morbid, but but it is a sign like lows that won't come up like that can be a sign of anorexia as well. Okay, so, um, and then there's just the signs of typical eating disorders to like with exercise anorexia, right. So exercising off more than you're taking in, on can be assigned to Wow.

Scott Benner 51:22
And it's interesting to that, as you're explaining it, the idea of wanting to control something is at the core of all these ideas, I'm either going to eat a lot, I'm controlling that, or I'm going to eat nothing, you're controlling the flow of food, right? And so when so these things come when you when the mind can't find any sense of control anywhere else.

Julia Blanchette, PhD 51:48
Yep. And the other thing too, that I didn't even get into is binge eating, binge eating is really common. in adults, I see it a lot in adults a diabetes, and that in itself, it's you're you, you're trying to control something and then you kind of just eat everything right. And that's part of the stress release mechanism.

Scott Benner 52:11
Yeah, and what is what can binge eating look like? Is it constant snacking? Or is it Oh, no, it's sitting down with a mass of food that not no one should take in at one time and just forcing it in?

Julia Blanchette, PhD 52:26
Well, so a lot of people who Benji will do it in private, like, they're not going to do it in front of others, but a lot of times, they don't eat a lot. And then or they're trying really hard to, um, for lack of a better word, control what they're eating, like, eat, like having fallen kind of like a rigid diet, and then they'll just binge on something. Later on, and the things that people binge on are different based on the person. But um, a lot of times it's in private at home, and I can't even tell you because I I don't do therapy with people who Benji, I just know, I, I work with people's insulin management when they have been eating diagnosis. So yeah, a lot of times it's it's eating a lot of food. And it's a stress relief mechanism. Well, Oh, geez.

Scott Benner 53:24
Oh, see, you're, you're you're like you're very upbeat, everything. Everything you bring up is exciting.

Unknown Speaker 53:31
I mean, I think that was my topic. And

Julia Blanchette, PhD 53:35
I feel like anyone that is seeking help, I mean, I look at it from the standpoint like anyone that's coming to me for help with insulin management that's seeing someone else to help with their diagnosis, like they're doing all they can to take control of their diabetes. And I think that's a good thing.

Scott Benner 53:53
Yeah. So what you're describing that I don't know if it's coming out or not, is that while while a person is off, trying to address their eating disorder with someone, you're actually helping them use the insulin to get through the eating disorder? Is that right?

Julia Blanchette, PhD 54:06
Yeah, I do that a lot, actually. Um, so we had a dietician who worked with me who specialize also in eating disorders. And she left. So I took on a couple of her patients, but even before that, I had some experience from diabetes camp throughout the years, with adolescents who had eating disorders of various types. And then, because eating disorders are more prevalent, and people have diabetes, and in the general population, I do have a handful of patients who have eating disorders. So Wow.

Scott Benner 54:39
Yeah. Well, that's really nice work. It's good work you're doing and I appreciate you coming on the show and talking about this. We're obviously going to try to do this more frequently with you. Yeah, so but I

Julia Blanchette, PhD 54:49
apprec I don't think we really had time today to go into like, how do you handle

Scott Benner 54:54
No, no, I think about 20 minutes into you talking I realized that this is not This is not a to be conversation. This is a longer, you know, chat. These are chapters not not just like, you know, bullet points. Exactly. Yeah. And And not only that, but we had a little technical problem in the beginning, that was my fault. And so we were a little shorter on time than usual. But still, I realized an extra 10 minutes wasn't gonna help anything. This is an ongoing conversation. So

Julia Blanchette, PhD 55:23
we could talk for a long time about it. So I will be here to complete the chapters. And we will

Scott Benner 55:28
that's it. So Julie is just trying to stay on the podcast more. She's like, I'll stretch this out a little bit. Now. It was your idea. I know it was. I'm just kidding. Look at you. Look, you got uptight right away. You're like, Don't blame me for this. No, no, no, I didn't do this. One day, we're gonna get into your specific insanity. Boy. I really do appreciate you doing this. And, you know, I really, you know, I'm not going to keep saying it to you over and over again. But your amassed knowledge, and how much you've put into all this already in your life is really impressive. So I'd like to keep this podcast going for a long time so I can find out what else you do. I want to see what like 48 year old Julia does. I'll be like, can you talk louder because I won't be able to hear you right then. You'll be like why are these air pods not working? I'm like I don't know.

Huge thanks Julia for coming back on the show. Thanks to Omni pod for sponsoring thanks to the Contour Next One blood glucose meter for sponsoring and thanks to touched by type one. Now you can check out touched by type one on Facebook or Instagram and of course at touched by type one.org check to see if you're eligible for the free 30 day trial of the Omni pod dash and Omni pod comm forward slash juice box and get yourself more information about the Contour Next One blood glucose meter or get started today. At Contour Next One comm forward slash juice box you may be eligible for a free meter.

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