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Scott Benner 0:00
Hello friends, and welcome to episode 627 of the Juicebox Podcast.

Today's episode of The Juicebox Podcast is another in the after dark series. This one was actually slated for next month. But I'm moving it up for one special listener. If you know who you are, and you're listening, I believe in you, I think you can do it. And I hope this episode helps you. 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. On today's show, we're going to be speaking with Casey, he has had diabetes for a very long time, and disordered eating since he was a child. Casey has tried a number of things to help himself. And one thing stuck. So much so that when he came on the podcast, he wanted to bring the person with him who helped him get through it. This is going to be broken up a little bit. We'll be talking to Casey in the beginning, and then Sherif will join us and talk about how she helped Casey. I hope you hang around. This is a good one.

This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter, go to contour next one.com forward slash juicebox to learn all about my daughter's blood sugar meter. Later in the episode, I'll tell you more about it. But for now, here's what you should know. It's little, but not too little. It's amazing. Can you be too amazing. It fits in your pocket or your bag. It has a super bright light. It's the most accurate meter I've ever used. And you can learn more about it and get started at contour next one.com forward slash juicebox.

Casey 2:09
Hi, my name is Casey.

Scott Benner 2:12
Casey, how long have you type one

Casey 2:15
that's going on, I guess. 43 years now.

Scott Benner 2:18
4444 years? How old were you when you were diagnosed?

Casey 2:22
I was nine. Wow. Nine years old. I'm making my 1970 1978 that'll that'll date me perfectly?

Scott Benner 2:30
We're almost the same age.

Casey 2:33
I think so. Yeah. Yeah, I

Scott Benner 2:34
was born in 71.

Casey 2:36
So it's only a couple years before blood testing.

Scott Benner 2:40
Real really? Yeah. Yeah. How would What do you remember them doing for you?

Casey 2:45
Oh, well, I mean, back in those days, there was no blood testing at home. There were no agencies. In fact, we tested urine in a test tube. And only and very shortly thereafter they came out with urine test strips. Kind of look a lot like the blood testing strips did right. You know, my family discovered you could slice them down the middle and double your double get the double twice as many for your money.

Scott Benner 3:20
Don't know why I found that amusing. Just a dumb picturing somebody with a pair of scissors going now we're saving. That is exactly

Casey 3:26
what I did. Yeah, that is exactly what I did. Sometimes you'd miss in screw up the strip, but you know, it still still saved a chunk of money.

Scott Benner 3:34
No kidding. That's really crazy. And did you find them to be fairly inaccurate? Or would you have no way to know?

Casey 3:39
Um, there's no way to know No, I think you had to show was the only mechanism available. In fact, so this will get sort of towards the heart of my story. By the second year of my diabetes, I learned that you could fake out the the test tube strip the test tube testing by testing with water and get a basically an orange result meant you had a high blood sugar but two hours ago unlike blood testing, which tells you where you are within a few minutes, right. The urine testing was two hours in the past. But if you I learned that I could fake it and and I did for a year straight. It looked it looked like I was in 100 a second honeymoon. as I as I faked my my urine testing. This is this is probably my second year second maybe third year diabetes.

Scott Benner 4:36
You're 11 years old. You're a little chemist. And what did you just did you dilute the yarn?

Casey 4:41
Well, I if somebody were watching I do the real thing. Um, if nobody was watching then I would fake it with just just water and water and water brought back over a blow resolvement my blood sugar was healthy. Oh

Scott Benner 4:56
I see. So the thing gets wet and then It either measures there's glucose or there isn't it doesn't measure if there's urine or there isn't.

Casey 5:05
That's right. Oh, that's right. React would react to any liquid. Um, I didn't I don't remember experimenting with other liquids, but it was just a it was a tablet that you dropped into the test tube, and then you'd add a couple drops of urine or in my case, water, and, and you get the test result.

Scott Benner 5:24
Do you remember what led you to want to make it look normal?

Casey 5:28
I'm basically cheating on my diet. Um, you know, back then. It was only after I went to summer camp for kids with diabetes, that I learned how to eat things like not candy, but ice cream or potato chips or, or things like that. My training at the hospital when I got diagnosed was really pretty rigorous. I learned a lot about food content, and I still remember today. But there were acceptable foods and unacceptable foods. And there were free foods and free foods. I live for fresca, carefree gum, pickles, jello, you know, those, there's a short list of free foods, but there were lots of foods that were forbidden, essentially. And so if I caved in and had those things, then I, we even back in those days, it was essentially one shot and done. So I had a one shot of long acting insulin in the in the morning. I didn't I didn't take regularly at that point in my life, or fast acting insulin at that point in my life. And, and so there was no way to correct for overeating. And, and so I would just fake it. I had hide it.

Scott Benner 6:54
And so, so this was just a function of for your parents. So your parents would think that your blood sugar was okay. Right? Right. What would happen if they thought it was high? They started paying more attention to what you're eating

Casey 7:07
that we would be stressful because I'd have to I would either lie or not, I'd Fess up. Or we'd have a long discussion about what was you know, what I done? Like, I think it was I was embarrassed and ashamed and things like that. So I and then that's, that's pretty I say that lightly. But the embarrassment and shame whenever an ever present feeling. From my from the early days or even before diabetes, I had issues with food, I was a bit overweight prior to diabetes. Now when I was about eight, second, second, third grade, um, I would at the on the way home from school, I would buy candy, and this is before diabetes. So I gained a lot of weight in that year eight, nine, um, and it was comfort food basically. And I'd had some troubles with a teacher I had troubles with a fellow classmate, and I found food, a comfort, soothing. But it also made me feel ashamed even then, even before diabetes. When I got diabetes, I actually thought I was I thought it was my fault. You know, even though they told me otherwise. I didn't believe them. I thought this was God's punishment for you know, sticking, stealing stealing money from my father's dresser to buy candy after school. Like I think

Scott Benner 8:33
I was actually thinking about the the incongruence between you cutting the test strips in half to save the money and then wasting the test strip by just running it under the water like that did that must have even gotten to you. I imagine. Did you think about that? Or is that a pasture age?

Casey 8:50
Maybe the cutting of the strips I think was probably driven by my parents. Um,

Scott Benner 8:55
so you weren't worried about the cost? They were? Well, yeah, that's right.

Casey 8:59
That's right. I really I adopted that. But I think that the wasting of the tests, reagent was probably to, to protect my ego. Because it was such a shameful thing that I I cheated. I was a bad a bad diabetic.

Scott Benner 9:18
And this is in the 70s. Right? Yeah, yeah. Okay, so do you think something about your well, you're on to talk about a an eating disorder? That's right. Right. So So do you have you ever thought back on it? Do you think the diabetes kicked it into gear? Do you think you would have found your way to it without diabetes?

Casey 9:42
Yes or No? Or yes to both questions. Okay. Um, yes, I think I was probably susceptible, susceptible to it from an early age as and that's sort of why I've talked about what it was going on when I was eight, right? Um, but I think that died. DVDs with its focus on numbers, um, leads, right. And it's focus on diet and restriction. And I know that nowadays we we tend not to think about it as restrictions anymore. But I still think that some of us are getting trained with these moralistic attitudes about it. And I think that's dangerous, because I think it helps feed the beast if it helps feed eating disorders.

Scott Benner 10:32
More or less, but yeah, I think you're talking about, like, plain and simple black and white. I did it right. I did it wrong. That feeling that it leaves you with?

Casey 10:42
That's right. Right. I mean, you're in those days, it was if you had an orange, um, you were wrong. You were bad diabetic. You know, now, it would be something if you're over over 180 You know, that that's, that could be conceived as bad. But, you know, it's not a moral question. It's a, you know, it's a navigation question.

Scott Benner 11:03
So when you have that if a person has that feeling, and today, real time, and they're led to think, oh, there's probably a management way I can deal with this better. That probably leads to some sort of an outcome. Hopefully, that's, that's viable, that works. But if the thought ends up being, oh, I shouldn't eat that anymore. Is that the beginning of the end? Like, is that feeling what drives you in that direction? Like, I don't think it's as

Casey 11:33
simple as that. I think, you know, I guess I would tell you that, you know, for most of my growing up and probably in my 20s and 30s, I had disordered eating, or eating where I over ate, and ate quite a lot. And then wouldn't take all of the insulin necessary to handle that to get my blood sugar back in line, I would let it ride and basically piss it away. Yeah. You know, and run run the perpetually running the are frequently running the risk of long term complications,

Scott Benner 12:10
to stave off the impact of the food of the overeating.

Casey 12:14
It Yes, and to control weight. Yeah. So you know, I was obsessed with gaining weight or not gaining weight, or preventing the gain of weight, even though I couldn't control my eating. And, and I would manipulate my insulin to control that later in my 40s, I developed a thyroid condition. And at the same time, in my life, I was getting divorced. Because of the divorce, I was losing the house or having a short sell the house we had. And I was engaged in this, this pretty severe disordered eating. So binge binge eating. And for time I, I stopped taking insulin on first long stretches, I would not take insulin, I would take enough insulin to keep me out of the hospital basically. Um, so in my 40s, it reached the worst point. So I mean, we tend to think of eating disorders that something that is something that affects young women, teenage girls, um, but honestly, it can affect anyone at any time in their life. Just if the if the timing is wrong, I think it can, it can blow it can blow up into full blown illness. So I would say you know, my behaviors as a teenager and through through college in my work life, the disordered eating was a problem became, I became really very sick in my 40s and would hijack my metabolism in other ways. So not just manipulating insulin, but I would manipulate the thyroid medication to become hyper thyroid to lose, lose weight fast, you know, that kind of thing? Yeah. Um,

Scott Benner 14:01
well, can I ask you? I mean, it seems kind of an obvious question, but is that process that takes over your life? Is it like a job?

Casey 14:10
It becomes a job? Yeah, absolutely. It becomes it becomes a job to hide it from everyone to so hide it from your work or your co workers, your your boss, your, your loved ones, your friends, it. It's pretty all income. It becomes all encompassing.

Scott Benner 14:30
So you and but it's very conscious, though, like, it sounds like for you, it was like it wasn't you were well aware you were doing it. Meaning it was on purpose. So is it it to try to help me understand a little bit? Am I standing in the kitchen with food in my hand and thinking I'm going to eat too much food and then I'm not gonna take insulin? And then I'll lie to this person, like, does it all run through your head like that? Or is it just happening? Do you know what I mean? Like, is it what's the word I'm looking for? For

Casey 15:00
me, it's not it's not some malice aforethought. It's more it just unfolds. Because each time it happens, you promise yourself you're not going to it's like other addiction, you know, alcohol or drugs or cigarettes, or you're telling yourself, you're not going to do it again. That you know he as guilty as you feel as a shamed, you might feel sad that this, this is definitely the last time and you would cave every time. Right? You know, I caved every time. Are you

Scott Benner 15:30
even? Are you even aware of the soothing part at that point? Like the eating? Is the eating still masking something for you like of an emotional pain? Or what was it doing?

Casey 15:44
Well, here's the thing, I think, you know, what I've discovered in recovery, is it by managing my diabetes closely, keeping it in range? minimizes the urge to overeat a lot. It doesn't eliminate entirely so, you know, I still have to find better ways to cope with intense emotions, anxiety, stress. What else was I thinking shame. If I feel those things, then they're likely to trigger a desire to binge as comfort. Okay. But that's, that's even less now, too. I mean, it happens from time to time I've been, but I've been in recovery enough that I found other strategies that are effective. But the biggest thing for me is that when my blood sugar is low, I want to eat the whole damn kitchen. If my blood sugar is high, I want to eat the whole damn kitchen. And if I keep it within range, I don't have that, that physic I don't have the physical drive to be so it's it becomes I think the urge to binge starts from a physical, physical thing. So dieters put their bodies in, in crisis, and they put themselves in an energy deficit. And so they're vulnerable to that feeling to this kind of thing. Yeah. So it's likewise folks who are focused on appearance or their body. So athletes like runners and wrestlers, models, singers, dancers, gymnasts, all have a much higher incidence of eating disorder. And it's because they're, they're focused on on their appearance. They're worried they're they're worried about how they look in or how much they weigh.

Scott Benner 17:44
So there's a physical piece, and, and a psychological

Casey 17:49
piece. That's absolutely right. And so I mean, for me, the biggest chunk of getting getting into recovery, I talked about getting straight, was first getting a handle on the physical, physical symptoms, right. And I lucked out in that respect, I lucked out in a sense I, that my 40s, I became so ill that I was severely dehydrated, really weak, I could barely function. And I'm a, I'm an engineer by day, but I'm a musician by night and I sing, as I was in New York, New York City. I'm singing on stage or planning to sing on stage. But I'd had a foot infection for about a week. Maybe Maybe it's actually longer than that. It was a few weeks, but had been bothering me the whole week that I was in New York. And I knew that I had to get seen. I went up on stage to sing a couple songs. And it was so weak from dehydration. So you can imagine the dehydration results from high blood sugars and perpetually high blood sugars. It was constant I was constantly dehydrated. But I was so weak I could barely hold I had to hold myself up using the microphone stand. And and I finished I finished my my piece, walked off the stage said goodbye to my friends there and jumped in a cab and went to went to the hospital. So when I got to the hospital, it was clear I had to have part of my foot removed. Oh, really? And that was that was that for me was the

Scott Benner 19:35
the straw that broke the camel's back.

Casey 19:37
Wow, it was it was the wake up call. Yeah. Yeah.

Scott Benner 19:41
Sure, would you or even in that scenario, are you eating because of the stress of the performance, but restricting insulin because of the stress of people looking at you during the performance?

Casey 19:55
Yep, basically, that's That's right. That's that's pretty pretty pretty.

Scott Benner 20:00
That sounds torturous.

Casey 20:02
It really was twitches. Yeah.

Scott Benner 20:03
Yeah, it was. It's, it's, it's, it's quite literally the it's the it's the basis for every Marvel movie, right? Like it's it's like you know you want something that thing kills you. You know you can't stop yourself from wanting it you can't stop yourself from going after it. It tries to kill you. Yeah. Wow, that's insane and it's it's hard to imagine if you're not going through it I would think I would think people listening who don't have this in their life

Casey 20:34
I struggle I struggle to really put myself back in that those feelings because I'm even describing it to you today I mean I'm at a distance from it. And and you're right it isn't it wasn't saying it isn't saying and I now struggled to sort of empathize with my old self so like how how is that possible? How could How could you How could you have done

Scott Benner 21:01
that? Do you have moments when you're mad at yourself? In retrospect Yeah.

Casey 21:05
Oh, cuz Oh, I've because of I guess I was gonna talk when we talked about the long term consequences of eating disorders like like die bulimia this, this is Edie DMT one eating disorder diabetes mellitus type one. But I think of it as diet bulimia in my case, because it was basically binge eating followed by restriction of insulin, those two things were pretty fundamental to what I was doing right and, but the long term consequences are just what you'd expect. The obvious ones are, you know, I damage kidney damage, circulation issues, neuropathy. The less visible things are things like gastroparesis, so problems with digestion, skin problems, teeth problems per periodontal disease, I actually have some pretty severe damage to my, to my gums and teeth, that I can't, I can, I can slow down, but you know, I've lost a lot of bone, right? And you can interferes with your sex life. So the neuropathy can really cause a problem for man, especially the ED of Ed, so to speak, how much on that there, the less visible consequences are what happens to your relationships with people. So problems with work, problems with your love life problems with, you know, being unavailable to your kids, so missing important things in your kid's life? You know, all those things, I think we don't tend to think about those things. But for me, di bulimia whittled away everything I had. So I lost love. I lost a home, I lost work. And so I ended I ended up with absolutely nothing.

Scott Benner 22:58
I you kept going and I I almost cut you off to ask if you thought this had something to do with the dissolving of your marriage. But I think you answered that pretty well.

Casey 23:08
Oh, yeah, absolutely. Yeah. But it wasn't I mean, every I probably burned through every love I ever had. Because of this, like over the over the years, you know,

Scott Benner 23:19
what's the mechanism there that you're just not ever authentically being yourself? And so the person knows a version of you, that's not really you. That,

Casey 23:28
um, yeah, I think that's absolutely true. That you could, I certainly tried to be upfront and honest. And even later, and more recently, I knew I, I was in half assed recovery, where I thought, I thought I was recovering. And I confessed to my, my girlfriend at the time, that had an eating disorder. She didn't really understand it. Didn't ask many questions didn't really pursue it. I tried to explain as best I could, but I think I'm not. I'm not quite sure why she did. Certainly, she loved me. But, um, I the the problem was that because I was still engaging and some of the behaviors, this was after the foot after I lost a toe. It took a long time, it took three years to finally get physically back to I'd say not normal, but to to be recovered. And it took a while to get the shoe were correct. So I wouldn't reinjure myself, that kind of thing. But I still was periodically engaging in overeating and manipulation of insulin, not to the same degree, but I still was doing it. Yeah. And unfortunately, it causes all kinds of things physically. So water retention issues. It's nice to be sometimes I feel bloated, sometimes I feel dehydrated energy problems, stamina problems, as I said, sexual dysfunction. So in a relationship, an intimate relationship, those things are are devastating, right. And as a man with a woman I could try to explain. But more often than not, they blame themselves. They thought it was them, they thought they were unattractive, or they thought, you know, there was there was something wrong with the relationship, that kind of thing.

Scott Benner 25:43
So yes, that thing happens to you. And then it triggers something in them about how they feel. And then you're on a slippery slope of people's feelings.

Casey 25:51
That's absolutely right. Yeah.

Scott Benner 25:53
Wow. A couple of small questions, the loss of the toe, and you said about footwear that fits. So your health was so tenuous, that even just pressure from an ill fitting shoe caused you an issue or,

Casey 26:09
well, if the trick was, you know, I lost my baby toe, which, if you're going to lose something, that's probably not a bad thing, okay. You lose a big toe, it screws up your balance in profound ways, that kind of thing. For me, what it meant was there was a bone, there's a the the metatarsal bone in my in my left foot floats, because it's not tied to a toe. And, and that means that left to its own devices, it will cut me from within. And so I need I need modified shoe wear. And I'm sorry to go into the details, because I know it's kind of grim. But I need modified shoe wear inserts to support the bones in a way that keeps me from injuring my foot, I got a new way. Alright. And in fact, it took, I injured my foot twice in two years, and had to get some pretty serious treatment both times. And each time I had to, I had to go on a device to prevent my walking on my foot altogether. So in fact, I had a peg leg that strapped to my knee. And the kept my foot off the ground. And I actually walked upon my knee. Oh, no kidding, how long that in turn screwed up my back for a long time, right? So it just it took a long time to finally get the inserts modified in such a way that they're right for my foot. And I don't I now I now can go hiking, I now can walk. You know, I was in New Orleans a couple weeks back. Um, did 10,000 Steps say each day that I was there. So you know, six miles a walking, you know, each day. But that took a while to reach the point where I could do that.

Scott Benner 27:58
Have you ever thought back to what could have been different in your life that would have either stave this off or helped to be, I guess brought to light and and worked on? Quicker? Like, is there? I might it's a hamfisted question. But is there something that could have happened differently that would have saved you this?

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Casey 31:29
A few things, I think early on efforts to I mean, I think that that initial training and diabetes was really damaging. You know, the the the idea that there was good and bad that there were bad good foods and bad foods. So that video, the moral judgment, I think weighed heavily on me. And I find it today even later when I went to camp that that was a message that wasn't they actually were saying no you can diabetes can eat just about anything. You just gotta you just gotta manage it properly. By then I was already too far gone. I thought I thought I was getting away with something, I guess what I thought was an option for freedom was in fact a foolish playing with fire. Yeah. And and I feel free now. I'm free, I free feel free or now because I'm managing my diabetes and it protects the things that I care about the energy that and the energy that I need for those things. Yeah, um, but I didn't I didn't have that perspective when I was 10. Or, of course 20 or 30?

Scott Benner 32:53
Did it help or hurt going to camp? Because did you just meet more people in your situation? And you guys taught each other how to game the system more?

Casey 33:01
No, I wouldn't say that. Certainly, we did share notes. Um, you know, as a teenager, we shoot we'd share notes on how to drink alcohol and manage it successfully. So you didn't end up high or low, that kind of thing. You know, their their strategies for dealing with alcohol and those sorts of things. Um, I guess what I would say instead, I certainly became aware of other kids who were engaged in the same sort of disordered eating that I was in. But I was with boys and young men. Because this was the jossan camp in Massachusetts. There was a girls camp and a boys camp near nearby one another. But I would say and this is really important. This sort of one of the things I wanted, this is sort of why I wanted to come and talk with you was 1/3 of type one women will have suffered an eating disorder. And 1/6 of the men will have suffered in an eating disorder. That means about 560,000 Americans

Scott Benner 34:22
with type one with type one.

Casey 34:24
Yeah, with suffering eating disorders. Most of us don't get treatment and certainly the men don't, don't Fess up. We often don't even recognize, you know, as I said, I didn't I recognize that my my eating was messed up. But because I wasn't. I kept myself out of the hospital. I somehow told myself that I wasn't sick. And so finally, when I did go to the hospital, I kind of you know, I I gave him I you know, I was fully you know, fully admitted to myself that I was out of control. I don't No another took it took 30 years for me to admit that I was out of control. Right.

Scott Benner 35:05
I don't know a better way to ask this. I apologize. But did it ever feel hard to say because it felt like you had a girls problem?

Casey 35:12
Yeah, yeah. Yeah, it's it still does. I'm finding that now, as we're talking,

Scott Benner 35:17
and that not just forgive yourself internally, but from people outside I would imagine to.

Casey 35:23
Yeah, I guess I'm growing more, I probably didn't say it out loud to a friend. Until this past January, when it was really this past January, when my recovery became conscious and solid. You know, I'd been in recovery for a few years at that point. But as I said, kind of half acidly, you know, I didn't really have a plan, I didn't really have a support system. I didn't have a therapist or support group. I didn't really know what I was doing. And I wasn't aware of the the, our current understanding our modern understanding of eating disorders and how they work. I've sort of educated myself along with through sheer a carpenter, who are who will, we'll talk talk to in a minute. Yeah, um, well, that's, I guess what I would say is that, you know, if chuck, chuck my saying to a friend, who I'd known for close to close to 40 years, that this was going on with me, and I said, this has been going on since you and I were kids. And he goes, How do I not know that Tom? You know, how did it how is that possible? And it's just because I was I kept I kept it a secret? Yeah, you know, deep dark secret for so long,

Scott Benner 36:52
right? Well, I mean, I expecting that someone could help you. would seem uncommon to me, I know that sounds may be strange to people who understand therapy and, and have engaged in it with a probably a lot of success. But I don't know how you're involved in everything you're involved in, you have diabetes, you have these feelings about foods, you're making these steps, doing these things, manipulating insulin, and then just think, well, I'll just tell a friend, it'll get better. Like, that doesn't even seem like a reasonable step. You know?

Casey 37:27
No, but I certainly have an I, one of the things I wanted to talk to you about, too, was what I think medical professionals need to do better. Because there have been many times in my life where I confessed to them. In one way or another what was going on? And none of them. Absolutely none of them until one nurse a couple years back, asked me any exploratory questions, tried to understand the extent of what was going on. I mean, I would get an I get a I get crazy a one sees I had once had an eight, one C of 17. Oh my gosh. Right. Other times, much more commonly, I'd have an A one C of 12, or 13. But nobody said no one used that as a as a as a signal to probe further to understand why was that a one see happening. There was one nurse who did probe in an intelligent way. But what I got at the end of that was a referral to a nutritionist. I didn't need a nutritionist, I needed something I needed. Probably at that point, I needed to be hospitalized and have a physical intervention. Right. And I might have been ready for that. But what inevitably, will inevitably what would happen would be, because there wasn't any, I got no sense that there was any alternative. I just felt like I'm on I'm on a roller coaster, and I can't get off. Yeah, and I don't see any way off of

Scott Benner 39:08
it. It's incredibly important for people to I mean, it's trite to say like, advocate for yourself, right. But what that really means, in my opinion, is that in a lot of cases, you're going to be getting medical care. That's checkbox, like the doctors got things are supposed to do they check the boxes off, you're not dead. When you walked out of there gay, I did my thing, bring in the next person. And then they have this kind of in the back of their head idea. Like not everyone's gonna succeed at this. So everyone I talked to doesn't have to look like they're doing great. Like, I don't know if that's a conscious thought. But I don't I don't see it any differently. I've dealt with doctors on multiple levels for different problems. And the ones who stop and go listen, I'm going to sit here with you and we're going to fix this right now. We're going to figure a plan out right now. They're not that many of them.

Casey 39:58
Yeah, you know, but I do think Some of this is training. So the fact that because I'm pretty sure that young women probably get a questionnaire sort of thing, a checklist of questions. If not routinely then periodically. I never was asked any probing question in any, any in any systematic way. And there were times in my life when I would have fessed up when I was ready for change. And I and but nobody was asking, right, so I would say, you know, a checklist in the same way that docs and therapists have a checklist of questions to ask folks who are have problems with alcohol or with drugs, they could certainly do the same thing for eating disorders. pediatria on that, I would say, you know, when I did have an intelligent conversation about the behavior, what should have been part of the conversation was a plan is like, you know, what is a reasonable plan to help somebody get recovered? Yeah, you know, are there resources to go to are there? I mean, there are physical treatment facilities, there are support groups, there are individual therapist, and even therapists and support groups that specialize in diabetes or die bulimia. Um, you know, so just having, having that information available or, you know, unreachable, right in reach? Are we really

Scott Benner 41:25
a roadmap to look at to say, these are the steps I take, because I'm so lost at this point, I wouldn't know where to begin or what to do. And, and the probing questions thing is important. I was I started to say that even at a certain age pediatrician, start asking questions that are clearly meant to see if you're depressed, like I did, it's it's obvious, like you take your kids in for well visits. And they, they, you know, they kind of couch it like a conversation, but they're clearly looking for signs of depression. It's an obvious thing to do. I would think.

Casey 41:57
So. And I'm thinking that that, you know, that's, that's become part of the training that Doc's are getting. So they've they've had some exercise and doing that, I think that, you know, this is the thing, because it's so prevalent among diabetes, diabetics. Certainly the endos. ought to have it part of their routine. Yeah.

Scott Benner 42:17
How much do you think this could have been different? If magically, the technology that exists now would have existed when you were a child? Do you think that would have changed anything for you?

Casey 42:30
Maybe, maybe, I think I would tell you now I can't, how I can't tell you how important the CGM is for my current good health. You know, the fact that I can track so closely and get such proactive notice, when I'm going higher low. I'm gonna learn these tricks from you. You know, I had to retrain myself in diabetes, because for at least 20 years, I'd been acting like I didn't have it. Yeah. Um,

Scott Benner 43:06
so not that it would change the the psychological issues that any person has. But you did describe earlier not leaving a range helps you on the physical side. Yeah. And yeah, and just having an understood, I mean, when's the really when's the first time in your life with type one that you really felt like you understood how to make impact with insulin?

Casey 43:29
Oh, I don't know. I guess I I, being positive, I was joking to myself, you know, bold with insulin, I was born with insulin. Pretty early on, although it wasn't part of my early training. As soon as regular was available, and we were discussing, we, I learned about Pre-Bolus Singh back in the day. That was pretty powerful. And I certainly took advantage of it at times, and I appreciated how, how much control one could get, um, for those periods of time that I was actually following the plan, right. I now use those techniques all the time. So setting my Basal carefully and correctly, you know, Pre-Bolus, using a regularly course correcting all the time, so following the arrows and heading them off at the past that kind of thing. Yeah. That really, you know, I mean, I'm doing MDI at the moment. I'm supposed to go on Omni pod shortly. But, but I've got a, an A one C, that's nearly normal. Wow. And and that's, that's because of the sort of the active steps I now can take with the data I get from the CGM

Scott Benner 44:51
right. Now it's a I mean, it's obvious. If you're if anybody is paying attention, it's completely obvious. I was just wondering I guess I was looking for an answer similar to the one you gave, so people can understand that just the technology alone isn't going to stave off an eating disorder like Yes. It doesn't mean you can't be diagnosed in 2021. And have this happen to you because you can see your data suddenly. And there are

Casey 45:16
say they're, the two things that enabled me to recover are certainly, I would say, your podcast, and the support group that Shira runs, wow, those two things have been my most useful tools for getting my life back.

Scott Benner 45:37
I'm sorry, those statements take me by surprise, all the time. And then I get this, it just so people can understand. I get this weird sensation up my spine. And it makes me a little lightheaded and like to think of you like we don't know each other. But I am connected enough to my feelings, to not be able to kind of in a blase way, just roll past somebody saying that. I'm very happy for you. I'm ecstatic that the podcast helped you at all. And it's a it's very gratifying, and makes me happy. It's

Casey 46:12
really been a crucial Scott. Yeah, great. I mean, I'd say, I mean, the after dark episodes, sort of led me to kind of reach out to you finally, but I kind of went through, I haven't listened to all the all the podcasts, I listen to so many of them. And certainly all the pro tips. And some of the pro tips more than once. Yeah. They sort of made this, you know, tight control possible. You know, I was doing okay, before I was listening to the podcast, but this, this really tightened the closed all the gaps and tighten everything up for me.

Scott Benner 46:50
That's a, it's amazing. I just think that I mean, I don't know how many times I could possibly say it, but people at the very least deserve an understanding some tools and a shot. You know, like, is everyone going to come through diabetes the same? I don't think so. I think there are a lot of variables that are personal, that might stop a person from being as interactive or caring or whatever. But still, everyone should have a shot at like, everyone should, you know, I don't know. They should have a chance. Oh, yeah.

Casey 47:23
Good. So, I mean, my desire to come on the show was to get the word out to other diabetics like me. Yeah, that you don't have to stay on the roller coaster. You can get off the ride. Right? Um, you can get your life back. It's possible. Well, I didn't know it was possible for 30 years. I didn't know as possible, right. It's gonna make me angry that it took me so long.

Scott Benner 47:50
Yeah, it helps to hear other people succeed, doesn't it?

Casey 47:54
Yeah. Oh, it sure does. Yeah. Well, one of the things I like about hearing the reading the Facebook posts on on your facebook link, yeah. You know, those those tails, young kids, young older folks, it doesn't matter that they're inspiring.

Scott Benner 48:09
Now I agree. Okay. Well, she was here, hold on a second. I'm gonna let her in.

Or audio is connecting. Well, I'm, I'm officially the only one without a camera. Hi, Sherry. How are you? Good. Hi, how are you? Good. We are still recording and won't stop just so you know. Okay. But if you take a second to introduce yourself, that'd be terrific.

Shira Charpentier 48:38
Awesome. I am sure Charpentier from living proof. Amen. Based in Bloomington, Minnesota,

Scott Benner 48:46
it's nice to be to do this. I really appreciate it. Excellent. Thank

Shira Charpentier 48:49
you for having me, of course.

Scott Benner 48:52
So we've basically gone through, you know, the story, and we're up to present day. And I think if you don't mind it unless and unless you think otherwise case and you want to ask a different question. I'm just interested to know how you got started in this. And so we can get a little footing for who you are.

Shira Charpentier 49:14
Sure. So I am now 38 years old, and I struggled with an eating disorder between the ages of about seven and 30. So this October, I'll be celebrating eight years in recovery. I would consider myself recovered. Probably the last three years, I would say I've been much more confident to say that my struggle was the combination because of trauma as a child, perfectionism, really high standards for my parents, high expectations, and you know, just not really feeling like I was good enough compared to my sister And my use sort of really morphed throughout the 20, some years from anorexia, to overexercising to orthorexia to bulimia, to binge eating back to bulimia and anorexia, and just the whole gamut. And I was in another treatment tried so many different therapists went to different states for treatment. And I didn't do well, to say the least in treatment, it was not a positive experience or environment for me. And I remember my therapist at the time, who I really, really, really loved. That was probably life changing for me. But before we ended our time together, he said, You haven't failed treatment, treatment has failed you. And that has stuck with me since then. And I decided to leave treatment, the whole treatment worlds not just that place, but just in general, when I was either going to, I really felt like I was going to die in treatment, it was really, really devastating for me to be there. And it made my into sort of way worse. And I was getting away with so much that they couldn't control me. And so I decided to leave because I was like, I'm not going to die in a treatment center. And I'd rather try living outside of here. And if I die trying to live, then that's at least I tried. And so I left and I was the best decision I ever made, found my my power, found my confidence found my freedom. I mean, I basically came back to myself that I guess I never even knew. And I really cannot find any of the resources. Honestly, the thing that was most helpful was going to a groups. And I did that for many months right after I left because there's nothing else. And they actually helped me get to my first 100 days of no eating disorder symptoms. And for me at that time, it was restricting and purging a lot. And so just kept going and going and I would slip up and then we'd start over again. And finally I do 100 days. And it's been just an amazing ride since then. I started living proof of men. Technically, two years ago, when I started, we opened up the nonprofit. But about four years ago, I started mentoring people one on one, in person and through through the phone. Basically, after I would go share my story at a treatment center about my recovery, people come up to me and say, Hey, can I get your phone number? I'd love to just talk with you. And I realized that's exactly what people are looking for is connection. Someone that's been through it lived experience, some of that really gets it and no bullsh. I think that's been probably the best part of living proof is I tell people straight. And I don't know if people ever really did that. To me, it was sort of like, tiptoeing around things walking on eggshells, kind of coddling and I tell people right off the bat, like, this is me. And if you want something different, like there's other people out there, but my whole goal is to get people to recovery, not for them to need me the rest of their life. Like that's, that's definitely not what I want to create here. So nothing has been amazing. Last couple years.

Scott Benner 53:24
Yeah, that's it does sound amazing. I wanted to ask you, if you could tell me the difference between what standard treatment is what you found when you left it and how it's morphed into what you do?

Shira Charpentier 53:38
Yeah, so standard treatment, you know, I can see the marriage in it. Right? I really think standard treatment is for to get people out of that critical zone where, you know, maybe kidneys, liver, pancreas, heart, brain are all affected, and trying to get nutrition into them. I don't see treatment centers as a place to actually recover. I think it's really a stabilization and trying to at least get nutrition somebody when they're really resistant.

Casey 54:13
To think of them as detox centers. Is that accurate?

Shira Charpentier 54:16
I think that yeah. Yeah. But that's

Scott Benner 54:19
not going to fix the reason why you have the disordered eating. No. And they

Shira Charpentier 54:23
really focus on the food, the weight piece which for me, it wasn't really the the primary cause of my eating disorder, which I think the majority of people don't start an eating disorder don't fall into any disorder because they want to be a different size. It's because they're not confident. They're not self assured. They feel like they're less than other people they're judged they're whatever it is, that's, you know, eating disorders or not. I think the wrap is like oh, you don't like your body but that comes later when you're so wrapped up in meanness or all you then do is focus on your body because you're malnourished, but in the beginning, most People, majority of people do not start because of their body. So driven centers really don't work on the man, the mind, the retraining the brain, reframing, you know, building a new life for yourself. And like you can't build a new life for yourself when you're enclosed in four walls, and not having fresh air for four weeks. That was my experience.

Scott Benner 55:22
So if I can stop you in that situation, you were still finding ways to involve yourself in the disorder? Right? under their nose? Were they not trying to stop you? Or did they not know how to look forward? Even?

Shira Charpentier 55:35
I? I don't know. I was, I mean, the problem is with this disease and disorder is is very sneaky, sneaky, and manipulative. And if somebody doesn't want to get better, they don't want to get better. It's easy, almost nearly impossible to convince somebody until they actually want to get better.

Scott Benner 55:53
Okay. And what do you think, you know, what do you think your thing was? Like? What made you is it rock bottom? Is that what we're talking about?

Shira Charpentier 56:02
Or I mean, I feel like I hit that several times. For me, I, I knew I wasn't living. I didn't want to live like that I was completely miserable. I was sick of being sick. I couldn't live a normal life. And when I looked at other people's, like, I have spent 30 years of my life sick. And I'm done with this. I don't like I know, there's more for me. But I didn't. I really didn't know how to get there. But I think that was my turning point was like actually wanting something different. I just didn't know how to exactly do that yet.

Scott Benner 56:39
So is it? Is it I'm trying I'm trying very hard to understand. So is it sort of like rabbit holes and cycles, you just get caught in something. And before you know it, it's a way of life. And that's what you do. And then that becomes your thing. And I this is such a this is not a great example, but in my like, early 20s. This is gonna sound stupid, maybe. But cigar smoking became very, like, popular among young kids. And so you'd have to go to a store that sold cigars because they were in human doors, and then eventually going to buy one became like a lot of work. So you bought a humidor for your house, then you kept some with you. And then before you know it, I was like, why are we smoking cigars so frequently? And I just like wow, like we've gotten caught in a thing. Like we made a pattern for ourselves. Like it's not on purpose. Like you could see how it broke down. And I stopped and I was like, I don't mean to be doing this this frequently. What do I do, and I took the cigars and the humidor and I pushed him in the garbage. And I was like, I'm gonna break whatever this little cycle is right here.

Shira Charpentier 57:48
I know what it is. It's similar to what you're saying. But you know, what the hard part is with eating disorders is that you can't get rid of food. You actually have to build a new relationship with food, your body society, you know, diet, culture, your confidence, like you being you, you can't, like you have to stop trying to be somebody else. And you just have to be like, This is me Take it or leave it kind of thing. And that's that's the hard thing is like, it's not like another addiction because you take away the food you take or not the food, the cigars, the drinking the drugs, whatever it is the sex thing, whatever. You take away, you get food away,

Scott Benner 58:28
right? Oh, okay. Well, that makes a ton of sense. I mean, it's, it's incredibly obvious now that you said it. But yet I see you have an issue. It builds a bad cycle around a thing that you can't avoid. You have to have this food. If you don't have this food, you'll end up in such a dire medical situation. Yeah, that you end up in one of these kind of cookie cutter scenarios where they're just trying to get you better, but no one's addressing any of the things that got you to this position to begin with. It becomes a medical, it starts as a psychological issue. Yeah, but by the time you get to treatment, it's a medical issue.

Shira Charpentier 59:06
Totally. Yeah, that's a great way to look at it. Okay. Okay.

Scott Benner 59:09
And then you get out. You recognize you need something? How did it how did he help you?

Shira Charpentier 59:17
I think it was the community. They were so positive. Like, oh my god, cheers here. How was your night like I was rescue day and I'm like, ah, it was really hard and they're like, but you came back you know, like they were just so supportive positive like they never were putting me down they're never like thinking that I couldn't do it. And when I started like racking up like two days, five days I mean celebration talk about when you walk in and like You're like I did another day and they were like, more happy than I've never seen anybody for myself. So I think that was that was one of the biggest things that we tried to do that, you know, every time we start a group we what are your victories? What have you succeeded in you know, what have you challenge yourself and done better. And just getting people to recognize like small things are actually huge. And they do add up over time.

Scott Benner 1:00:09
A question that might sound unfair, but I think it needs to be asked, How helpful is it to be in a scenario with people who you feel like can't judge you. Not that they won't judge you, but that they're in your position and they can't judge you.

Shira Charpentier 1:00:23
I think it's huge. Okay. Huge, okay. And if you're, if you're just sitting with a clinician, the therapist, whatever, dietitian, you know, there is a hierarchy, right. And as a mentor, the reason why I didn't go and get my therapy degree was because I want to be able to share my story. When you're sitting with a therapist, there's rules and regulations, you can't talk about yourself. So if I went and got a degree to, quote unquote, do this, like the general population wants to think that I can do this, it will take away my ability to relate to people, which is exactly what they need, they need to relate to somebody that's been there, done it got through it. That's how you build confidence in other people. I'm like, wow, I actually want to live a life like share has, like Casey is starting to build like Tasha, like, when you actually start seeing people in recovery, people were like, want to emulate that. And that's I think what's lacking in this whole treatment center, is you don't really see anybody that's getting better.

Scott Benner 1:01:23
You're not gonna find an argument with me. I've had people ask me, like, why don't you become like a diabetes? Like something something like, oh, then there'd be no follow? And those rules did the exact thing you're trying to get away from? Exactly, yeah. Not that it's not important like that, by the way, not that it's not important that there's a place for somebody who's internal organs are shutting down can go away. Right, that all makes sense. Yeah. But you have to be able to have this other piece. And Casey is that what kind of lit you up about Shearer was did you find sameness in her conversations?

Casey 1:01:56
Um, I think initially, it was, wow. And initially, what what brought me into share was I was reaching out, I realized that I had I was flying solo, without any support at all, and kind of without any guidance without any model. And I went looking for therapists that took my insurance that was nearly impossible. And I was looking for Diabelli MC specialists, that was nearly impossible. The ones I did reach out to were either they were fully booked, or they didn't take my insurance. And the National Eating Disorder Association, National Eating disorders.org, Nita had she are listed as providing during COVID remote support groups. Wow. So I just reached out to her. And in the very first meeting, there was discussion of recovery. And I was like, no one's I've never heard that.

Scott Benner 1:03:04
The idea that it might be gone one day, didn't didn't occur to you ever.

Casey 1:03:09
Well, I guess my impression was that, and I in fact, just that week, I'd had a conversation with my friend, my friend, Jeff, who you talk to and I think a couple of weeks about other things. He I know he's got a different agenda than I do. But I was talking with him. He was the one I confessed that I had an eating disorder to. And he was shocked after 40 years. Yeah. That because I'd never shared it with him. But I told him then that well, this is something thinking it was like alcoholism, it's something I'm going to live with the rest of my days, you know, I've got to fight it all the time. And just thinking that way. Sounds like ongoing help. The fact is, you can reach a point and this I've come to believe that this this sort of the way I'm living now. And I can see that Shira lives that way, is that you can reach a point where, yes, it's part of you that you you remember that it was part of you. But you don't have to practice it every day. It's not something that haunts you, or every day, it's you know, you can redefine yourself, retrain your brain to think in new ways. Yeah. Find new coping mechanisms for the things that that are troubling in life. You know, the things that trouble everyone anxiety and stress some, and so forth. You know, I think I think that recovery, I've come to believe that recovery is truly possible. And I can see it, I can taste it. It's it's a wonderful thing. I I feel better now than I did then than I did when I was 30.

Scott Benner 1:04:39
Is it easier to mirror because she did it?

Casey 1:04:43
Because she gives me the confidence that I can Okay, you know, I she she makes me believe that it's it's it's an attainable goal.

Scott Benner 1:04:51
I say, Do you think it's sheer Do you think it's harder for a clinician who doesn't or hasn't had an eating disorder to help Somebody with one?

Shira Charpentier 1:05:01
Yes, definitely. I mean, they're, you know, learning out of a textbook, right? And the statistics for recovery are not good. One death every 52 minutes, have a direct result to an eating disorder. That's terrible. The recovery rate is like, they say it's like 55 something percent. But I, I don't know, I think that's a little high. To actually full recovery. It's almost nearly impossible for me to find we try to speak speakers on Wednesday nights, our recovery night story tonight. So I kind of, you know, talk to people beforehand, and kind of, you know, kind of ask them, what is their recovery look like? And I'm like, Are you sure you're in recovery? I'm like this and sound like the recovery that I'm trying to like, you know, model for people. And so, I mean, I'm just having a hard time even finding people that are like, actually in recovery and not using some other means to manage their weight, manage their stress, you know, just little coping strategies. It doesn't mean just because you can eat that you're in recovery, right? It really has to do with the mindset. And I think that's what people forget is like, you can come on a treatment eating, and maybe your weights gone up great. But is your mind still focused on, you know, consumed by calories and by food and what you look like and how many steps you take today? Like, that's the things that takes time to retrain your brain on

Scott Benner 1:06:32
Sure. I asked Casey, I'm gonna ask you to, in in when you're embroiled in this, how much of your life is taken up by it?

Shira Charpentier 1:06:40
Oh, my God, I would say 99.9% of you, you feel you think you're doing fine in the world? But you are not present at all?

Scott Benner 1:06:50
Any? Is it difficult to have personal relationships?

Shira Charpentier 1:06:54
Yes. Very? Well, so, so much secrecy. You know?

Scott Benner 1:07:00
Yeah. between you and yourself, between yourself and by people around you to write? Or do you? Or that that would be my question is, were you 100% conscious? Or were you lying to yourself as well?

Shira Charpentier 1:07:14
Oh, I was lying to myself. I mean, I went to nursing school, and I was one that was one of my sickest points was, was during that year, I went through it an accelerated program. I honestly don't even remember much of that year, I was really not doing well. And, you know, people said, like, you really should take a break and go get help. I'm like, Oh, my God, this, you know, I'm getting A's I should be fat. Like, I'm fine. Yeah, no, that's crazy. Hey, I know so many people leading lives like this parents, spouses, you know, daughters, and your next door neighbor, you in, like Casey said, his best friend. I know, I don't even know.

Scott Benner 1:07:52
I have the same question for both of you. It may be anecdotal to get the answer. But do you see this more frequently with certain religious backgrounds? parenting styles? Do you know I'm saying like people who would maybe use guilt as a parenting tool versus like the enemy. Like, I know that that sounds very incredibly generalized. But I'm 50 I'm still allowed to generalize. I'm grandfathered in, in the world. So, but I know we don't do that anymore. But still, I talked to a lot of people who have type one diabetes who come from an English or Irish background, I talked to a lot of people who when I hear them describe their upbringings, you go, were you Catholic, and they go, Yeah, how'd you know? And I'm, like, grow big, like, is there like, you know, that kind of stuff, like you said, you, your parents, it sounded to me, like, what you were telling me was that your parents pitted you against your sister in an attempt to make you in their eyes as good as she was like, that's like, and that's a weird thing to do to a child. So, like, do you see your parents as monsters? Or do you see them as just not good at parenting?

Shira Charpentier 1:09:02
You know, I, I, we've i My relationship with them has completely changed since I've been in recovery. Okay, um, there was just a lot of a lot of pressure. My dad is came to America when he was 21, from Israel, and just a very, very strict upbringing from his own childhood, a lot of expectation, you know, like, the American dream, like he has lived it. And he put that on my sisters and me, and, you know, being perfect and high attaining. And if you're going to do something, do it 100% You know, don't fail. And it was, it was very tense. I shouldn't say in my house.

Scott Benner 1:09:48
It's interesting, because immigrant is probably one of the things like first generation is one of the things I love about that idea that there's this amazingly better place and all of a sudden you have access to it and don't wasted because, yes, blah, blah, blah, because I know so many people who kill to be here and have this opportunity and etc, etc. And then having good, I'm sorry.

Shira Charpentier 1:10:10
And think about you as a child, you know that you're destroying your life, and you're full of shame, you're full of guilt, you don't know how to get yourself out of it. And then the more shame and guilt you feel the worst season sort of becomes. So it's like a terrible cycle, right? And it's, it's just so so hard to pull yourself out of that. That lack of esteem for yourself, when you've kind of been pigeon holed into me wanting a better life. And you're like, Well, I'm trying to do the best I can.

Scott Benner 1:10:44
Was any part of your recovery, telling your parents?

Shira Charpentier 1:10:47
Oh, gosh, yes. Yeah. That was one of the turning points for me was, I wrote a letter to each of them. I wrote, read it to them out loud. And it wasn't so much that they needed to understand or sympathize or apologize. But for me, it was after 30 years actually being able to say everything I wanted to say, Yeah. And it was, I tell everybody, I work with almost everybody. You need whoever it is that sort of stifling you or you feel like you're needing to live up to those expectations. You have to tell them how you feel, because it's the only way to sort of break down that wall and say, You know what, I'm living my life. I love that you're caring about me and what the bestiary but I'm, I've been living your life. And look what happened to me. Like, I need to take ownership and responsibility. And that was, that was a huge turning point. For me.

Scott Benner 1:11:41
It's also completely unfair, like a grown person telling a child Don't Don't fail succeed. I mean, that might actually be reasonable advice for another 45 year old person, you're talking to, like, hey, try harder, you don't eat or like, we got to take advantage of this. But this doesn't translate to a child like No, not at all.

Casey 1:11:59
And I would say, I mean, my experiences. My parents were, my dad was never a perfectionist, but my mother is, but she didn't really impose that upon us. But I think we got it anyway, we caught the bug anyway. Right? They so certainly, you know, I struggle with with the own my own perfectionism, and that's just, you know, on so on unrealistic goals, unrealistic goal setting, is really is part of the problem.

Scott Benner 1:12:33
And you feel more hardwired towards that. Yeah, wow. If

Casey 1:12:37
not hardwired, then at least I was modeling behavior that I saw, right, you know, so it wasn't like I had a monster of a parent, there was so much as I had a parent who is struggling with some of the same issues. And although they didn't get expressed an eating disorder for her, they certainly are just as problematic in her life in other ways.

Scott Benner 1:12:57
So yeah, well, I I just think that's good for people to hear. Because you, because sure I'm, you know, I'm trying to do the same thing you're trying to do, which is let enough of your story out that people hearing it might find themselves in it a little bit and see a pathway for it. So I guess the the big leap here is because you said it, right? You didn't fail at therapy therapy failed you. How do you not when you have so little, either financial ability or insurance or even energy left in your body, and you've decided to make a leap? How do you not get frozen thinking you're gonna make the wrong choice for who you talk to?

Shira Charpentier 1:13:36
Yeah, that's super hard. And you know, I talk to parents, a lot. They, you know, call, like, my daughter just got diagnosed, my son is exhibiting XYZ, I don't know what to do. And, you know, they're reading reviews, and they're talking to people that have been there. And there's a lot of toxic places, and people and therapists that say they know what they're doing. And I think they're causing a lot more harm than good. And so I tell parents all the time, you have to go with your gut. If you got a child under 18, you know them best. Do not put them in professionals. Hands just because they're professional, you have to feel like they're actually going to be able to help and if you're seeing signs that your child is getting worse than that is a sign that that is not a good relationship, and there's something you need to do something different. And I, I tell people all the time, you can move around as much as you need to. Right? Like if something isn't clicking, then it's not clicking. And a lot of people go to treatment for the first time and learn so many more eating disorder behaviors and rules and sneakiness like, unfortunately, it's kind of a breeding ground for becoming more entrenched your eating disorder, which is exactly what we don't want, but where else do we put people that need like same critical and need stabilization. I don't know.

Scott Benner 1:15:03
Yeah. It's like sort of the same ideas, putting people in prison. And now you've taken all the great Criminal Minds and put them together and all together. Next thing, you know, you need the Superfriends. Yeah, so I and Oh, wow. So if I get put into a situation like that, I'm not really ready to make a change. No, then these people are just teaching me how to Jimmy a lot faster. And I and I faked my way out of that scenario, go back into my life and just do it better than I was doing it before, man, by better, I mean, more privately, hardest to detect, Yeah, that

Casey 1:15:35
happens a lot. A lot are for me, I, Scott, I wish that I'd had physical intervention. Um, I'm lucky, I'm lucky that I am where I really am lucky than I got out of the physical challenge, sort of under my own steam, so to speak. Some of that had to do to do with the fact that I was physically disabled for a time and so couldn't, couldn't practice the same bullshit that I was engaged in. But it took losing a relationship for me to sort of have another comeuppance and then reach out for for sherif. You know, what I would say, though, is that diabetics especially are at risk in the early days of recovery. So initial recovery, and use when you start taking your insulin, again, suddenly, your body starts to retain water. So they, they, they tend to gain water weight really fast. And it's scary for someone who's so fixated on on weight, and appearance. And it doesn't last, the bloating, the bloating passes your your body in time, if you continue to treat your diabetes properly. That will settle down, right, but it's scary for a stretch of time. The other thing is it can accelerate complications, some and probably temporarily, but it can be dangerous. So you know the change in blood pressure can cause so you start taking your insulin again, your blood and get your blood sugar's under control. They might be high, but they but you're taking your insulin that's going to that can cause problems with eyes with kidneys with neuropathy, that kind of thing. Yeah, yeah, to pass in time. But if you're not under someone's care, then it's really risky. I wasn't I how I've managed to dodge those bullets. I don't know. Probably lucky, what I've what I've read is that sometimes the recovery in the short term can be really dangerous, and you want to have someone a doc, keeping an eye on you for those things. So I kind of wish I'd gone through a detox situation a 30 day kind of thing. Provided I was ready for change. Yeah, yeah, I wasn't ready for change, it wouldn't it wouldn't have stuck when done any good. You know, I just wanted to make sure that we got that out there is that, you know, if you're going to get recovery, you can go into recovery. Do it with some caution. You don't have to do it all at once. I mean, I think I kind of got this from Shiras group to be, you know, set reasonable goals. Um, forgive yourself the slips, you know, if you make you're gonna make mistakes, forgive yourself for those don't beat yourself up over them. And don't use them as a as an excuse to go back to the old ways, right, and celebrate the victories small as they may be. You know, I think the victories become bigger over time. But, you know, I think those those three things are really crucial.

Scott Benner 1:18:40
Yeah, I agree. Sure. Can I ask you a question? It's gonna sound self serving for half a second, but you'll see through it in your time with Casey, did you? Can you see any benefit that my podcast had on him?

Shira Charpentier 1:18:54
Yeah, he was super excited to tell us about it. You know, I've been fun guy. He's got these great podcasts up, I feel like I could really add to his community. I mean, he was just he lit up about you and to our group. And he's, you know, talked about it and just so so excited to be able to share a story and share the awareness. And you know, with so many people out there that are struggling in silence for sure.

Scott Benner 1:19:22
So what you heard from him was more of the community piece. So you're you're not, you're not specifically helping people with diet, bulimia, you're helping people with disordered eating. So, yes. So did you not get much into the diabetes piece with him? Like, were you able to help Casey without understanding that side of it?

Shira Charpentier 1:19:41
So I am a nurse in my background, but really, I don't practice that in living proof. And then I try to keep that separate. I mean, we really, I mean, he's free to talk about that piece. And he has mentioned it you know, sometimes, you know, I've dealt with this or, or this kind of challenge me or I realized this But that wasn't our main focus. And even in our support groups and the mentoring that I do, the focus is not on food and weight. It's on finding your joy, your passion, living life outside your eating disorder. Who do you want to be? Who do you want to show up as in this world? Building self confidence, huge. We talk about that a lot. new relationships, boundaries, hobbies, so really, you know, he did bring that to the group. But there was never like, we're gonna specifically talk about this.

Scott Benner 1:20:34
That's, yeah, I just wanted to make sure that I that people listening understood that maybe you don't need to specifically find somebody who knows how to help people with type one, maybe you need to talk to somebody who understands the psychological side of it, you can understand the diabetes on your own. This is an odd, like, sideline question. But is it harder to help people if they're cynical by nature? Yes. Yeah. Because it feels like what you're talking about, you know, when you say happy and joy and fulfilled to some people, they hear they hear BSPs BS, nobody's really happy, like that kind of thing. Yes, yeah. So cynicism will get in the way as well, it

Shira Charpentier 1:21:15
and pessimism and you know, I've failed so many times, I can't do this, or, you know, I'm weak. Nobody believes in me. I mean, I said, I'm like, throw all that out. You guys stop saying those things. The more you say it, the more you believe it. Right. And I mean, Casey's got such an amazing positive attitude. As

Casey 1:21:36
sure because because I'm as I'm as I can be as cynical as they come, you can

Shira Charpentier 1:21:41
be but you your attitude, like, you're very pensive, and very, like thought provoking. And you're like, I need to think about this before I say something. And at the same time, you can tell that you do want a different life. And I think that's kind of what it takes is like, I don't know how to get there myself. But I don't want this anymore. Right?

Scott Benner 1:22:03
It's, I just find it can be incredibly detrimental. To have that like that this can't work. Yeah, I'm not gonna find it. It's not for me, I used to hear people say a lot sure that there were like different kinds of diabetes, that always threw me off, like I have the kind, it's harder, and I was like, well, you get the same kind of everybody else has, you know, like, so. Like, don't get me wrong, somebody could have gastroparesis or something that's really impactful of how insulin works in their body in relationship to the food. But I was always thrown off by the idea that, you know, I heard it said, as a as a soothing tool, like, Don't worry, your diet, your diabetes may vary from somebody else's, right. So you might not get the same outcome they would get, which is true. But if you step back far enough, you can see all the variables that impact the the insulin and the food. And if you understand them all well enough, then different, seemingly different people can have similar outcomes. And to me, whether you get to it or not, I mean, that's I put this out in the world people can do with what they want with it. I just don't want them to think that they're predestined to not win. Yeah, you know, that's a dangerous feeling to have.

Shira Charpentier 1:23:17
Totally. And, like Casey said, I was in treatment for years. And most of the people that come here are 10 plus years in their own eating disorder, almost never hear the word recovery. Now, that boggles my mind. Why are we not trying to instill hope in people, you know, look at your potential. You know, this person has done it, you can to literally, they tell you, you're gonna live with an eating disorder, the rest of your life, you need to learn how to manage it, we'll probably see you every few months or a year to come in for a tune up. Hello, we're not we're not vehicles,

Scott Benner 1:23:56
I wonder if it's the finality of it. Because while you're talking, it occurs to me that in in a modern Western medicine, everything's about management, except cancer, where they try to they try to cure you. Because if they don't, cancer kills you. So so it's the idea that we can keep fine tuning because you're not going to drop dead tomorrow, we have time to work on it. But when they feel that feeling of oh, no, this has to get taken care of right away. Western medicine stops talking about management and starts talking about curing. It's, it's interesting, and I wonder if you didn't just take that, that piece for yourself, where you said, Look, we're not going to mess with this forever. Like, let's try to find it into it.

Shira Charpentier 1:24:37
I mean, I believe I did believe it for quite a while, right? Because psychiatrist therapist, dietician, occupational therapist, literally everybody was telling me the same thing.

Scott Benner 1:24:48
Yeah, this is an ongoing thing. You're gonna have to do this forever. Yes. Is what happens. I've got bills to pay. I got three kids in college. You better keep coming here. I mean, not that it's maybe not that But maybe that's just how they're taught that it's a process. I don't know, I think it's a, it's an amazing idea to just say, Look, maybe there's an end of this, let's, let's all look for it. You know, that can't hurt to look, I mean, less than if it, it can't hurt to look for it. If you never find it, you're still in treatment. Right? You know, yeah,

Casey 1:25:19
it's good. I would tell you that what I practice now is, is kind of actively listening to my own thoughts. Um, sometimes I'll get an urge, sometimes at ridiculous moments, I'll get an urge to eat something stupid. For No, sometimes for no good reason, or the I think of the eating disorder as a an odd. Some people think of their eating disorder as a monster. I think that gives it too much power. I think when you do that, you invest it with too much power. I tend to think of it as an unruly, younger version of myself. And so I've gotten pretty good at talking to it like a parent, like I'm a parent to it. Yeah. So I'm like, No, we're not doing that today. You know, don't be ridiculous. We are not, you know, we're not eating ice cream at the moment. You've got an interview for Juicebox Podcast, you know, that whatever, you know, that can thing but I can adopt a distance from it. I can listen to it. But I don't have to act on it. And I can let it I can let it kind of do its thing I can I can have it throw its tantrum in the aisle at the at the department store. But I'm not going to buy the toy.

Scott Benner 1:26:33
I wonder if people just in general don't give themselves enough credit for having power over their actions? Yeah, I

Casey 1:26:39
think so. I think I think we train ourselves, you know, the folks suffering eating disorders, we've trained ourselves to give them to the voice. And, and I don't, and I don't recommend actively fighting it either. Because, again, gives it too much power, right? I want to treat it like no, you're just annoying part of my reptile brain screaming and throwing an ant throwing a tantrum. And I'm going to ignore you. I'm going to annoy you to get tired so

Scott Benner 1:27:10
that those urges aren't a separate thing. They're you. And yeah, who'd be better to tell you what to do that you

Casey 1:27:17
it's my brain misbehaving right now. But, but I can separate myself enough from it sort of like, it's I'm not, I'm not broken. I'm not, you know, I'm, there's nothing wrong with me, per se. I can now I can now recognize that. Okay, now, this is just my brain acting up. And if I don't act on it, then in a few minutes in an hour, I'll be back to be back. And I won't be thinking that but

Scott Benner 1:27:44
you're making me wonder if we took you and threw you back in time. Where there was no food to have an eating disorder with if you would just be like the person in the tribe who caused the like, like, how would that come out of you? Like, do you know what I mean? Like, do you see what I'm saying? Sure. Like, if there was literally no food to do that with where those impulses lead somebody who had that feeling? We'll never know. But I just made me all the sudden, I all of a sudden I pictured Casey in a loincloth. And I was like wondering what he would like be up to? Is there anything? I'm not asking either of you that you think should get put in here? Sure, how do I do? Because I don't know anything about this. So

Shira Charpentier 1:28:28
yeah. Is this your first sort of eating disorder?

Scott Benner 1:28:31
No, I've had a number of conversations with people with diet bulimia. Okay, but I, so I have these different kind of, I mean, it's one podcast. But yeah, I tried to, I try to have conversations with people about things that nobody talks about. So I end up calling them after dark episodes, which I actually hate doing, because I don't think they should be, you know, under the cover of night. But I think that's how people think of them. Talking about sex and diabetes and drugs and, and all the things that people do that everybody pretends doesn't happen. That brought out a lot of people with eating disorders that want to talk about it, a lot of people with bipolar disorder that wanted to talk as well. And what I've learned is that I don't know what I'm talking about. So I don't pay it. I don't judge anybody. And I just try to ask what seems like the next most reasonable question based on what they've asked. Like, there was a lovely young girl on that talk, said to me, I want to come on and talk about taking drugs safely. And I was like, okay, so she's, you know, in her early 20s. She's like, I take a lot of psychedelics and there's ways to get them tested at fairs and raves and everything, and I want people to know, and I was like, okay, and she's talking and she said things in the course of that conversation that did not jive with my understanding of the world. And I just said, I just asked the next most logical question that didn't judge what she said. And that leaves at the other people listening to decide and takes it out of my hands because if I make Good judgment while we're talking, then the people listening will largely accept my judgment. Yeah. So it's important for me not to do that. And so I learned to talk to people better because, which is the podcast is being crazy help be helpful for me in that way. Because I used to be when I was younger, like a lot of younger people, I just thought I was right about things. And I had a point of view. And a lot of people don't have a point of view. Like if you get people together and get them talking, sometimes just the most confident person wins. And that was definitely me for a while. And yeah, but I just kept thinking that other people who don't jive with my way of thinking still have a perspective. And it would be valuable for people to know that and to hear it and valuable for me to hear it. So I just listened to what you guys were saying and ask the questions that popped into my head afterwards. I wish I could tell you I prepared better further than that. But I have found that preparation doesn't seem to make the podcast any better. So yeah, do you think you'll ever do something like this?

Shira Charpentier 1:31:05
podcast was,

Scott Benner 1:31:06
yeah, like, find a way to reach more people, because I can tell you something that may or may not help you. And I'll leave you guys alone. after that. I would say I started writing a blog in 2007. And I would get a note a month about how helpful the blog was. But the podcast is seven plus years old now has over 500 episodes. And I get probably six to 10 a day now. No. So there's a way if you're thoughtful enough with your message. And you're relatable enough, which it sounds like you obviously are. If it helps someone, they'll tell someone else about it. Yeah, and it really does have the ability, at least, if it's done well. And I don't know that you're completely in charge of it being done well, meaning that either your thing works for people or it doesn't, you can't like you can't take a piece of paper and write down the 20 things are going to make this podcast work. You know, if you're that person, and you believe you are and you're willing to put time and effort into it, it really will reach more people than you can imagine. And they have an amazing ability to take information and help themselves an ability that I think most people don't believe exists. People can help themselves if they have the right ideas, the right tools. Yeah, so I can I can tell you what, what microphone I would get if I was you, if you ever interested. All right. Thank you. No, of course, but it sounds like you're doing amazing things for people that's really generous. And yeah, I think it's a it's, if you send me guys details, I'll stitch them into the bumpers of the show too. So you can find seriously, so I'm not missing anything. You guys feel good about this?

Casey 1:32:53
I would say well Shiras website Living Proof mn.com My Website diabetes dash ed.org. But I would say one thing that's really important about what you do with the podcast, Scott, the fact that you talk about life with no restrictions, no. Man managing diabetes freely, so that there aren't there aren't things that you can or can't do. And that there's no shame involved, that there's no one way to do diabetes. I think that message is really liberating for any of us who have diabetes and and for anyone with eating disorder, eating disorders to that, that that absolutely applies. Right. Um, you know, I think the one thing for for, for getting recovered I think, for me, I white knuckled it for a long time. You know, I just kind of stopped the binging and held on but that wasn't really winning. That wasn't really winning. Yeah, I was just putting my life in limbo.

Scott Benner 1:34:02
I watched my father tried to quit smoking that way. And it was obvious that was not the my dad wasn't smoking because of how much he loves cigarettes. You know? Yeah, it just stuff like that doesn't work. Well, I appreciate you saying that. i i For me, it's really just that the core of my personality. I've never really I've never worried too much about what other people thought. And I can't take credit for that. Honestly, it just, you know, it's how I grew up or something that happened to me growing up, where I just always imagined that I had a good answer. And if I didn't have one, the only answer available to me, didn't mean it was the only answer that was available. So I would kind of pick around and look for other ideas in other places. I actually think it has a lot to do with being adopted Shira so my I love my family. But it became obvious to me in my early teens that I maybe was thinking on a different level than they were and I didn't want to hear ideas that I was like nah I don't think that's right. You know, and then and I'd hear that and instead of going with it, I'd be like, Well, what do I think is right? And then you start seeing a couple of things go right. And you're like, Whoa, and I think something is right, it works out where it feels like it works out, right? And then you got to get over the idea of does it just feel like it works out because it jives with how I feel. And then you start looking at other people. And what I would do is I'd look at other adults in my life, and I would find the best aspects of them. And I'd be like, that's a really valuable way that this guy thinks about this thing. Or I like the way this woman cares about these people. And I would just sort of like, not mirror, not steal from them. But I keep it as a consideration in my head that that felt like a good idea. And then if I started doing it, then I thought, Okay, well, this is good. This is a good way to live. Like nobody really taught me how to live. Like, I'll figure it out on my own. But I never once thought, and it led to a lot of uncomfortable moments in my life. Like there were times where I'd say no to things that other people like, you can't say no to that. I was like, Sure I can. But you know, like, of course, I don't want to do anything. My, my poor brother had somebody invited to his wedding recently by my mom. And he ran out of seats. And I was like, Tell mom, you can't bring those people. He's like, I can't do that. I was like, why not? It's your wedding. And and so I'm not. But but as callous as that sounds. And I think Casey you know this from listening, like, I am not a callous person. Like I, I care deeply about people I don't even know for reasons I don't even completely understand. But there's still a line that I can draw between what's right for me, and what's not. And I'm not willing to go on the other side of that line. I think a lot of life is much simpler than it appears to people.

Casey 1:36:54
I think you're immensely practical. Yes. Probably cut through the Yeah, take take the best and leave the rest.

Scott Benner 1:37:02
But I'm also incredibly hopeful. Although although my my immediate family wouldn't think that because I'm a no person to Sure. If you asked me about something, I started no and work my way backwards to why we maybe should do it. But but if you said to me, like, you know, we should do let's go here for vacation every now. And then I might get to yes. But I never leapt forward yelling Oh, my God, what a great idea because it feels like the pertinent decisions that need to be made hadn't been thought through yet. I don't I have no idea why any of this is true. But I do know that I feel in control of what I do. As best as any human being can be. I mean, I realize there are things outside of my control happening to me constantly. But the things that I am able to impact, I just try to constantly impact them in a way that's positive for me, for my family, and then for people outside of my family just seems obvious to me. But I don't know. I could be completely wrong, by the way. You know, I just know that it seems to be working out. So I'm writing that. All right. Yeah. I appreciate you coming on and doing this. I really do.

Shira Charpentier 1:38:07
Thank you so much for what you do, too. No, no. Sure.

Scott Benner 1:38:09
It was really nice to add your voice to this. And I'm Casey, if you can hold on one second longer. I'd like to say goodbye to you too. Sure. Sure. Hey, guys. Nice to meet you. You too. Thank you, sir. I think he's, well, that was great. I appreciate you adding her to this.

Casey 1:38:27
I'm glad I thought it was really important to have her longer term perspective. And because for me, she's my proof that it's possible. And, you know, I think, you know, I think I you know, I truly believe that recovery is a is I'm living it and a long term recoveries in my reach, you know? Yeah. I think that's I think that's true for everyone who really desires it and is willing to work for it. I think

Scott Benner 1:38:53
at the very least you that should be your goal. You know, it just I don't understand shooting halfway. Yeah, yeah, absolutely. Like, go go. Go for the end and, and see what happens. Well, I again, I can't thank you enough for doing this.

Casey 1:39:07
I'm so glad. Thanks. Thanks so much for having me. It's been a real pleasure. And I knew it was gonna be great. I'm great to spend some time with you.

Scott Benner 1:39:16
I'm glad I did not let you down

I want to thank the Contour Next One blood glucose meter for sponsoring this episode of The Juicebox Podcast. Also, I want to let you know that Casey gave you a website for share a moment ago but that website has been updated. I'll give you all that information in just a moment. Check out the Contour Next One blood glucose meter today at contour next one.com forward slash juicebox. Get yourself an accurate reliable, easy to use blood glucose meter. There are links in the show notes and at juicebox podcast.com. If you can't remember contour next one.com forward slash juicebox

I have a note here from Casey and he says first that sheer renamed organization beyond rules recovery and you can find our app beyond rules. recovery.org He also has a little note here to say that he's happily solidly still in recovery and committed to it has not had any relapses and is doing well. So there's a little check in for Casey, and an update for that website beyond rules recovery.org I hope you enjoyed this episode of The Juicebox Podcast check out Juicebox Podcast comm because there you'll find a lot more in the afterdark series. You can also find them right there in your podcast player, just look for Juicebox Podcast afterdark if you're looking for community around type one diabetes, look no farther than the Juicebox Podcast private Facebook group, over 21,000 members now Juicebox Podcast type one diabetes. And if you're looking to support type one diabetes research, just go to T one D exchange.org. Forward slash juicebox. It'll take you fewer than 10 minutes to fill out the absolutely easy to do survey. It's HIPAA compliant. Absolutely anonymous, again will take you less than 10 minutes. When you fill it out. Your answers will be helping other people with type one diabetes. It's very simple to do. T one D exchange.org. Forward slash juicebox. Thanks again for listening. I'll be back very soon with another episode of The Juicebox Podcast. And if my friends still listening, the one I mentioned at the beginning of the podcast. I hope this was great for you. I hope you enjoyed this episode that left you feeling empowered and capable because Casey did it and I think anybody could and so to that person and anyone out there who may be struggling with an eating disorder, I want to implore you not to give up to keep looking for your Shira your way out. I think you can do it. And I hope this helped