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#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.

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